Foster Family

Genesis 3:19 -A Day of Remembrance

2011-12-30T18:23:00.000-08:00

"For dust you are, and to dust you will return" - Genesis 3:19

This morning at 11am I met my Pastor Allen and a friend from church, Amber at Greensboro College. I wanted to have a very small and intimate gathering to spread Dennis' ashes. I chose Greensboro College because it held such meaning in our lives. The ceremony was perfect as the day was beautiful. Although I shed tears of sorrow, I also shed tears of release, and I know that joy is in my life now to stay. Here is a glimpse into the ceremony.

It began with Pastor Allen reading from the 23rd Psalm-

The LORD is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name’s sake. Even though I walk through the darkest of valleys,I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever.

Allen then prayed over the scripture and gave a blessing over my life and how the 23rd Psalm was meant to really represent how God was leading me through this new journey without Dennis.

After the prayer I took his ashes and spread them around the large tree on front center campus that has the two cement bench seats. This tree has outlived many of the storms of life on this campus and I know that it will sustain many more storms. It was a place that we often visited and just sat beneath to talk on cool Spring days (of course they didn't have benches back then).

Once I spread some ashes I had decided to include a rose ceremony. On our wedding day, Dennis had sent to me 3 yellow roses one at a time in the bride room with a special message on each one. Today I wanted to do the same by bringing our unity to a full circle of completion. I purchased 3 yellow roses and wrote a message to Dennis for each one.

Rose 1-

Dennis, This rose represents our 1st meeting here on campus, followed by classes together, friendship and then courtship. You began the S.H.M.I.L.Y (See How Much I Love You) before we even married. We married right here at the campus chapel and now today, I lay your ashes to rest on the earth here on campus.

Rose 2-

Dennis, With this rose I promise to honor our decision to put God first and raise our children to be loving and in a Christian home. I want them to know their earthly dad has joined their Heavenly Father and both are watching over them daily.

Rose 3-

Dennis, With this final rose I promise to never forget the good memories and to share them with our girls as they grow. I will move forward in forgiveness for the hurtful past and pain created by your absence as I may never understand the reason why. I promise to pray over them and live out our new life verse of Jeremiah 29:11

"For I know the plans I have for you declared the Lord, plans to prosper you (us) and not to harm you (us), plans to give you (us) a hope and a future".

Amen.

In closing, I thank you Allen and Amber for attending with me today. I think this song says it all and afterwards I ask Allen to close us in prayer.

The song played was from Dennis' memorial: "It is well with my soul" - Chris Rice

At the beginning I weeped from sorrow but by the end I could sing along and know that it truly was "well with my soul" and with Dennis.

The ceremony ended with a group hug and prayer. God was with us today as we lay him to final resting place on earth. It wasn't goodbye, it was see you on the other side. Forever and Always Loved---Dennis James Foster, Jr.

Christmas 2011

2011-12-23T18:55:00.000-08:00

It is hard to believe that another year is upon us and we are about to celebrate Christmas again. The hardest part is we are celebrating it differently this year. We are missing a very special member of our family here on earth in our presence. We know that he is getting to experience Christmas with Jesus himself but it doesn't make it any easier for those of us left behind. Kaitlyn told me tonight she wants to release two balloons on Christmas morning. One that says "Happy Birthday" for Jesus and the other that says "Merry Christmas" for her daddy. How sweet and tender her heart is for her to think of her dad. We still pray together every night and now she has asked we pray together every morning before we begin our day. There is a mighty change taking place in this little family of 3. I am so proud of Kaitlyn and her willingness to be open to spiritual realm of life. Kyleigh often speaks of "dadda" and I know she remembers him too. I want to take this moment to wish Dennis a very Merry Christmas and ask that he watch over us from heaven so that we may continue to thrive and prosper here on earth in his absence.

Journaling---Writing a Book

2011-11-14T19:49:00.000-08:00

So many have complimented me on my writing abilities. I have been journaling my thoughts and emotions for a while now and I am starting to compile them into a book. I don't know if I will ever seek publication. However, it is my story. My journey through this life - current nightmare, that I pray has a happy ending. So who knows, maybe one day I will let you read it too.

Grieving is Hard Work

2011-11-09T05:31:00.000-08:00

Yesterday I spent the afternoon with a counselor from Hospice of Pallative Care. She was so kind and let me just cry, something I needed to do. I have been working on healing both physically and emotionally now for almost 6 months and this was my first visit at Hospice. She shared with me this letter that I think says it all to those who care about me---

Dear Friends and Family,

I have experienced a loss that is devastating to me. It will take time, perhaps year, for me to work through the grief I am having because of this loss.

I will cry more than usual for some time. My tears are not a sign of weakness or lack of hope or faith. They are the symbols of the depth of my loss and the sign that I am beginning to recover.

I may become angry without there seeming to be a reason for it. My emotions after all are heightened by the stress of grief. Please be forgiving if I seem irrational at times.

I need your understanding and your presence more than anything else. If you don't know what to say, just touch me or give me a hug to let me know you care. Please don't wait for me to call you, I am often too tired to even think of reaching out for the help I need.

Don't allow me to withdraw from you. I need your more than ever during the next year.

Pray for me, only if your prayer is not an order for me to make you feel better. My faith is not an excuse from the process of grief.

If you, by chance, have had experience of the loss of a spouse to suicide, then share with me. You can't possibly make me feel worse if your experience is similar.

This loss is the worst thing that could happen to me. But I WILL get through it and I WILL live right again. I WILL not always feel as I do now. I WILL laugh again and enjoy friends and family again.

Thank you for caring about me. Your concern is a gift I will always treasure.

Love Crystal

Strong...yet weak

2011-10-02T15:30:00.000-07:00

So many people lately have stated, "you are so strong". This phrase always sends me into a state of shock. I am anything but strong. I am at my weakest point to be honest. The reason I appear strong is because I have people all around me holding me up. They aren't physically holding me up (not always). But they are emotionally holding me up when all I want to do is crawl up into the fetal position and cry the days away. I long for the day I see Dennis again. I seek peace and comfort and yearn for happiness again. Until then, I rely on the strength of everyone around me and prayers for discernment in decisions I make. Others say, "you are strong and it must be because your girls need you". When actually it is because I am forced to accept this and I must bring myself through it as well as raise my children to be the least effected by the crisis of losing their earthly father as possible. I can sometimes put up the front that I am doing well when on the inside I am falling apart. I wish they made super glue for the heart, it would take a lot to rebuild mine. I appreciate the continued strength of friends and family and the prayers and faith put into action by everyone.

Four Months

2011-09-13T18:45:00.001-07:00

Has it really been? Is it possible that I have gone four months without speaking to my best friend? Has it really been that long since our last moment together? Oh, how I miss you Dennis James Foster, Jr. I still love you as I did the day I said, "yes" when you were on one knee singing sweetly to me. Our babies miss you too. I hope when they call you on their play cell phones that you are answering in heaven and speaking directly to their heart how much you miss and love them. If I could only change the past, I would. Someone said, "we must move forward". I say, "we must never forget and take our time because we can never get back yesterday".

May the Lord watch between me and thee while we are absent one from another.

-- enscription on our first charm necklace and we recited it when we spent the night away from one another..I still whisper it knowing I will see him again

Missing

2011-09-11T14:49:00.001-07:00

Today I walked into church with my two girls and something was missing. The same something that has been missing for almost 4 months now. I watched other cars pull up with couples, families, or even in separate cars but reunite at the building. It sent my heart into a million shattered pieces that no one was able to pick up off the floor for me today. I miss him every moment. I wish people would stop saying it will get easier. I wish people would understand that when I don't smile it isn't because I'm mad or something is wrong other than the obvious. I just miss him!

Follow Up Scheduled

2011-08-23T17:51:00.000-07:00

I spoke to the neurosurgeon's office this morning and my follow up angiogram is scheduled for November 23rd. That is the first day of vacation in November, the day before Thanksgiving. All should go well, as long as the right side shows healing like the left I will go home the same day and have no restrictions the next day. I can still eat Thanksgiving dinner and enjoy the few days of break. Compared to brain surgery, this can't be too bad.

Aneurysm Update

2011-08-01T15:38:00.000-07:00

Today I saw the neuro-radiologist surgeon that completed both of my recoiling surgeries to repair the aneuryms. He was pleased with my progress so far. He has me continuing on the Plavix for one month, 325 mg of aspirin daily for life, and repeat of an angiogram procedure in 4 months to check the right side and make sure it has completely healed. From that point, he will decide if I need a repeat angiogram or just MRA's to keep a constant watch on future development of aneurysms. As a young female that has already had two repaired, I am prone to develop more in my lifetime. However, I have never smoked and do not have high blood pressure which were two major risks factors for developing aneurysm to begin with. Ironic?? Anyways, I also asked about my two daughters being at risk and he said not at this time but as they enter adulthood they should be watched for risk signs and possibly have a MRA conducted between ages of 21 and 35 if they have similar symptoms and occurrences that led to my MRA.

For now, I am back to "normal" routine. I can drive again and take care of my children without assistance. This is a big step for us. The house is on the market and I am praying it sells quickly so we can begin a new start. I will return to teaching this fall and the children will return to school. I am praying the transition is smooth for all of us. Until then, we plan to enjoy the remainder of the summer with family and friends. Thanks for following us through this journey. We appreciate your continued prayers and support as the healing journey of renewal has only begun.

2nd Surgery is over

2011-07-20T15:55:00.000-07:00

July 18th I went in for my second surgery to repair the right side aneurysm. I am so glad that this surgery is in my past. I am looking forward to having the recovery moving quickly as well. I am fighting off migraines and typical headaches and pains. Trying not to go crazy knowing I can't do anything to help my own children for the next two weeks. Hopelessly relying on everyone to do to everything for me. Not in my nature to do but going to pray it goes quickly. My post op appointment is August 1st. Thanks for the prayers.

Post Op Appointment

2011-06-09T18:01:00.000-07:00

I went for my post-op appointment yesterday. The doctor reviewed my scan of my brain from the first surgery and showed me the coils that are now in my brain and completely closing the left aneurysm. I was thinking the next surgery would be soon but due to him using a stent the first time to close the wide neck on the aneurysm, he wants to give me a full 6 weeks to heal before going in again. That will make the next surgery the week of July 18th. I will know the exact day closer to the week of surgery. Until then I plan to squeeze as much summer fun as possible with my girls. I was released to "normal" activity which means I can drive again, take walks and play with my girls. This will give us some much needed time to heal together as a family. Continue to pray for all of us. Thanks.

Quiet Reflections

2011-06-04T12:42:00.000-07:00

Today I watched part of the memorial video. Not exactly sure what I expected but the tears just flowed down my face. My heart sank deep in my chest. I found it hard to really listen to the words being shared. I guess it will take time for me to really remember and digest the service but what I remember and what I re-watched today was beautiful. All the words spoken were genuine and kind. I still miss him so. The wound in my heart is still fresh.

I called Dr. Sasser, minister that married us and spoke at the service, after I watched part of the video. He was so kind to just listen to me weep and talk about Dennis. He spoke such words of encouragement that night and today. He reminded me that we always looks to repeat yesterday because we know what to expect but we must live for today and tomorrow instead.

I spent the afternoon with my Janet, friend and neighbor, getting a pedicure and relaxing. It was nice to get away for an hour. The girls are well taken care of by friends right now and I am enjoying the solitude of the house for the next hour. I hate my restrictions on exercise, bending, driving and pretty much everything related to being independent and a full time mom. I am ready to have this chapter of health as part of yesterday.

Keep us in your prayers as I know you will.

Crystal

Unanswered Questions

2011-05-30T17:40:00.000-07:00

So I have started this blog entry a million times over in my head but just now getting around to writing it all down. So many questions running through my head since May 13^,2011. Sometimes I find myself answering the question in my own head and other times waiting as if God is going to speak through a burning bush and tell me exactly what I want and need to hear.

I wrestle with the whole concept of you are never given more than you can handle comment that I have heard so much the past weeks. Really?? This kinda goes back to my previous entry a year or more ago about the 90/10 principle. How 90 % of what happens in life is how you react to the 10% unpreventable. Still don’t believe it.

How can the God I loved for so many years think I could be strong enough to handle so much in such a short amount of time, or is it God? I don’t think it is God but then why hasn’t he intervened, or has he? I don’t believe my God makes bad things happen. I wonder why they happen and why he doesn’t fix it for my happiness. I wonder why he didn’t intervene and prevent it being “all knowing” that he is and all. But then I remember that there is another power at work in our lives and he works against us all the time, a demonic power. And just maybe this time the demonic forces are sitting back laughing and thinking they have me and my family right where they want us-vulnerable, scared, and alone.

Well, I am vulnerable, scared but not all alone. I have my family surrounding me. My mom, dad, brother, sis-in-law, best friends, church and community. I am lonely without the love of my life by my side. I am scared of what the future holds for me and my girls. I am vulnerable waiting on doctors to mend my brain. I am subject to crying at a moments notice over anything, weeping with my children or smiling while I listen to their innocent giggles.

I don’t know what the next hour holds for me. I don’t think Dennis did this on purpose or willfully. He would never leave me despite the lies in my head daily that say, “he left you alone to bear this burden”. He loved me. He loved his children. He was an amazing father and husband. But to Dennis he was alone. My prayer is that no one else ever endures the pain he felt that led him to the decision on May 13^th that forever changed my life. My prayer is that even I will reach out in my darkest hours. I promise myself to keep going but I can’t wait until I spend eternity with the man I was meant to grow old with.

I continue to be amazed by the outpour of love and support to me and my family. I ask that you still give us time to cope and me to heal before too many visits. Thank you for the monetary help, food, cards, and most of all love.

Sincerely,

Crystal

Balloons and Doves

2011-05-21T08:06:00.000-07:00

Yesterday was the balloon release at Shadybrook to honor Dennis. I went into his office prior to the event and felt such a peace in his office as if he was there with me all along. I only took a few personal items this time. Each person was given a balloon to release in his honor.

Significance of the Dove-

At our wedding Dennis and I held the ceremony of the doves. Doves make lifelong partners. At the balloon event and for the past several days a lone dove has been hanging out at the playground at Shadybrook. I think it is his way of saying, "I'm still here". Around our home and my school have been doves. A lone dove was in front of our home the other morning. Such peace in knowing he is still here.

I love you Dennis.

Sadness in our Home

2011-05-19T09:38:00.000-07:00

Tuesday, May 10, 2011 I have an MRI/MRA scan at Greensboro Imaging.

Wednesday, May 11, 2011 I have one of my worst headaches and stay home from school to recover 1/2 day. I find the results out by the doctor's office calling to check on me and finding I was having a migraine again they sent me to the ER. The MRA detected two brain aneurisms.

Thursday May 12, 2011 Dennis and I met with a radiology interventionist at Moses Cone Hospital. He described my two aneurisms as being opthalamic paired (one on each side of the brain). I must have surgery to repair. Surgery should happen within the next 2 weeks and then repeat the other side in 3-4 weeks.

Friday, May 13, 2011 Dennis falls under the pressures that had been weighing him down for so long and took his own life at our home while we were all sleeping.

This was the worst day of my life.

Saturday and Sunday are all a blur.

Monday, May 16th I privately viewed his body, his wishes were to be cremated although we have had many a disagreements about the topic I honored his request and held only a private family viewing. I had a long talk with Dennis that night and I still have unanswered questions but I will never forget that moment with him.

Tuesday, May 17th 2011 Memorial Service in his honor were hundreds came to celebrate his life, yet all I could do was mourn his death.

Wednesday, May 18th another day that passes me by as I long to be with my best friend. Another day my girls cry out for their daddy. Another long day.

Thursday, May 19th I sit here wondering when will we all move out of this deep dark sadness. I miss him.

To my husband, father of my children, my very best friend, Dennis James Foster, Jr.

I will always love you and be "Amazed".

So BIG

2011-03-15T18:42:00.000-07:00

Kyleigh is growing in leaps and bounds in so many ways. She is more and more verbal each day. She is seeing so much better after this last surgery. Her eye pressures are normal. We have eliminated most of her drops. She is patching 1-2 hours a day but using a really cute glass cover patch instead of the stick on kind. She is eating chicken like it is the best food ever and it is so cool to watch her at the dinner table now. Most recently, she has surprised me with her recent potty training event. She initiated this entire ordeal on her own one Saturday when she pulled her pants down, verbalized something while pulling at her diaper and continued until I guessed that she was wanting to potty. She went to the bathroom, lifted the toilet seat and said "otti". It was adorable. From that moment on we have given her freedom to go to the bathroom whenever she asks as well as we have prompted her at times to go use the potty. We even pulled out the more comfy small sized toddler potty for her. Her teachers at school have also been reinforcing going potty with her.

Today at school she earned stickers every time she initiated going to the potty and actually pee-pee in the potty. Additionally, she "pooped" in the potty today! Yep, you go it...my little girl did her big girl business on the potty! Whooop Whooop! I am one excited mommy! Starting tomorrow she will be wearing training panties (you know the thicker kind of panties but not diapers) during the daytime and only diapers at nap and bedtime. I am sure we may go through many outfits in a given day at first but we are willing to try and she seems ready. Either way, she has made GREAT progress and we are so VERY PROUD.

Also, Kaitlyn is growing so fast too. She has really taken off with her reading lately. She is learning and retaining more and more sight words. She is reading books to us and enjoying it. We are SO VERY PROUD of her as well.

Looking forward to more and more changes as this year moves along.

Hurdles

2011-02-19T11:38:00.000-08:00

Kyleigh jumps a hurdle (eye surgery), recovers quickly, just in time to face another hurdle-pneumonia. She has had this cold for quite a while now and as of this past Wednesday it was still just a cold plus she had pink eye. Last night she started running a fever of 102.0 and with Tylenol it only went down a bit before bed time. She went to the doctor this morning and it sounds like pneumonia. Doctor's orders to keep her separate from Kaitlyn, breathing treatments 3 times a day, and Augmentum. If her fever persists come back to the office on Monday or if worsens over the weekend to seek treatment at the hospital. She has been sleeping most of the day. Prayers that she will heal quickly.

Surgery Outcome

2011-02-11T04:33:00.000-08:00

Kyleigh did great this past Wednesday during her surgery. She waited very patiently in the pre-surgical area as it was almost 1:30 before they took her back for surgery. Shortly after she was becoming anxious and fussy they provided her a pre-med mixture that calmed her down and brought back her smiles. We weren't sure at first if she was smiling at how goofy mommy looked in the OR outfit or if it was the medicine working but we think it could have been a combination of both events. I was able to accompany her back to the OR for the "monkey gas" that puts her to sleep. She sat in my lap and tried to "lick" the air as the nurse to her "smell the bananas". I guess she was so hungry that she was trying to eat the gas. Because she wouldn't allow the mask on her face completely, some of the gas leaked up my way as I held her and it was slowly taking affect on me as well. Luckily as soon as the nurse escorted me out to fresh air I was able to shake off the feeling of sleepiness. Kyleigh drifted off to sleep and they lay her on the table as I kissed her forehead and went to wait with Dennis. It was so difficult to walk away but I knew she was in good hands with all of the doctors and nurses on board.

It was projected to last an hour and half but it was less than an hour when Dr. Freedman emerged and gave us the good news that Kyleigh did wonderful. Dr. Freedman was able to remove the cataract regrowth material from her eye and fully examine both eyes. Her retinas, optic nerves, and other tissues were intact and looking good. She told us to return Thursday morning for a post-op appointment where they would check the eye incision and pressure.

It was a little past 3 before they came to get me to go back with her in recovery. There are 2 recovery rooms and she has to stay a minimum of 30 minutes in each setting. The first room she is supposed to take clear liquids before being released. However, this time she slept the entire 30 minutes in the first room which is why it took them so long to call me back because they waited until she was waking to come and get me. As soon as I arrived to the room they were ready to move her to stage 2 recovery and offer her some apple juice.

The nurse said her vitals were great and if she would tolerate it she could have apple juice and some crackers. She hadn't tried to speak yet until the nurse went to remove the electrodes and take her temperature she raised up and with a very froggy voice said, "no-no" and laid back down. I guess she was saying leave me alone already. It was cute and she had already won the hearts of all of her nurses by that point. She did great sipping on the juice and taking small bites of graham cracker. Thirty minutes passed quickly and they were ready to discharge us to go home.

Once removing the IV port we started to get her dressed when she leaned over and puked all over my leg. Nice! Poor baby girl was being hit by a wave of nausea from anesthesia for the very first time ever. Given she has had many surgeries and never thrown up before we were a little surprised this time. She continued to vomit as we got her dressed but she handled it so gracefully and her daddy was a big help with leaning her forward and reassuring her she was okay. I tend to freeze up and under-react when my kids vomit so I wasn't much help at all. Since the IV was already out they were unable to give her a dose of Zofran and it would've meant re-inserting an IV to give her nausea meds and we didn't want to put her through that procedure either. Instead, the nurse gave us provisions of buckets, chuck pads, and tissues for the ride home. Dennis rode in the back with her and I drove home. She threw up a few more times and slept as well. It was pitiful.

We arrived home, stripped my clothes and hers as she continued to throw up. I think this was one of the worst parts of the day. She didn't want anything else for a while. She lay on my lap on the couch and chilled for about an hour until her color in her cheeks returned and she was ready for some more juice and crackers. By nightfall she drank some milk and was ready for bed. The other sad part of the day was when we had to place the no-no's on her arms again to prevent her for messing with her eye during the night.

She will continue to wear the eye shield and no-no's in bed for the duration of the weekend to protect her for causing accidental injury to the eye as it heals and the stitches dissolve. She is a trooper though and for the most part has been really great. She is a little clingy and whiny at times but that is to be expected.

Her post-op appointment was Thursday morning at 7:45 am and despite the snow flurries and dusting we all traveled to Duke for this appointment without any trouble. She did great for Dr. Freedman as she gave her eye drops, checked the pressure, did an ultrasound and examined the eye. Everything looked great except her pressure was higher than we like. It was in the 20's and prior to surgery it was 10 or less. So Kyleigh will return next Tuesday for a re-examination and pressure check to see if healing of the eye has helped the pressure to drop. She is also on a round the clock regimen of eye drops including ones for pressure. The doctor is hopeful that the pressure will go down and she will closely monitor to make sure it remains this way. We love Dr. Freedman!

As I type this she is begging for my attention so I will go now and play baby doll with my own sweet baby girl which if I am being honest is not so much a baby anymore. Thanks for all of your prayers and support.

Upcoming Surgery and Update on Girls

2011-02-08T18:15:00.000-08:00

Tomorrow at 11:15am Kyleigh will have another eye surgery at Duke Eye Center. She regrew the cataract on her left eye so she must have it removed to allow for sight in this eye to not be hindered further. The surgery itself isn't that difficult but it is the preparation before, the recovery after, and the cloud of possible problems looming over head that causes me anxiety. Kyleigh can not have food after midnight and considering she isn't a big fan of dinner time, the last meal she had was at school today. She can have a sippy cup of milk in the morning if we wake her up at 4:45am and she drinks it by 5am. Then she can only have water or apple juice until 9:15. Our arrival time is not the surgery time so we are not really sure how long it will be before she is actually taken back for the surgery but she is definitely going to be hungry by that point. After surgery, she is usually pretty fussy from waking up out of the anesthesia. Luckily we don't have to spend the night, instead we can come home once she is awake and has drank something substantial. The ride home can be just as difficult if she is no longer drowsy from being put under, her eye hurts, the bandage bothers her, or any number of things. The other part is the risk of surgery on her left eye is glaucoma setting in this eye too. So far she only has glaucoma troubles with her right eye which was the cause of eye surgery last year to place the implant drainage tube (shunt). It would be great to have this surgery go smoothly and the outcome be that her vision is restored and no problems come after the fact.

Other updates...

Kyleigh is talking up a storm lately. Today at school her teachers reported that she finally used a sentence to say, "help me please", when she couldn't get her pear on to her fork. Oh my goodness, that made me so proud that I almost cried. We are working so hard on her using her words to ask for help instead of crying and this is a major step. She also said her teachers names today, "jessie" and "k k" for Kimberly. So proud!

Kaitlyn is doing well in school. She got her report card and it shows that she is improving in her reading. Although she is still behind, most likely related to vision, she is receiving lots of support and high fives from her teachers, therapists and us at home. She is taking more steps to write on her own and have fun with writing. She is becoming more and more confident in her own self. We are are so proud of her too!

Stay tuned...more updates to come soon.

Vision Update

2011-01-03T17:25:00.000-08:00

Over the winter break we took both girls to the doctor for a vision and glaucoma pressure check. Both girls turned out to have very good pressure checks this visit. We were so thrilled about this small amount of good news today.

Kaitlyn's astigmatism in her right eye has increased and could be the cause of increased eye strain and difficulty with vision - "I can't see", "My eyes are tired", "My head hurts", and other recent complaints. So needless to say we left with a new prescription for her eyeglasses that thankfully we had put off purchasing new frames until the new year so it worked out.

Unfortunately, Kyleigh didn't have the best of reports. Her eye patching has been going well but she still is having difficulty seeing with the left eye. As it turns out she is getting vision through the previous surgical canal that was made when her cataract was removed almost 2 years ago (there is a technical term for this that I just can't remember). She is not looking through her pupil because much to the surprise of the doctor and ourselves she has re-grown a cataract that is blocking her pupil. This will need to be taken care of sooner rather than later to preserve the chance of keeping her brain from shutting off and telling the eye not to work. So we will opt for surgery sometime in January or February. Currently we are awaiting the surgical scheduling desk to contact us with dates and times.

Until then, things go on as usual. Stay tuned for more updates. And..Happy New Year.

Look Who's Turning 2

2010-12-12T17:04:00.000-08:00

Watch on WFMY News 2 this coming weekend to see our little angel's debut for "Look Who's Turning 2". It is hard to believe that this little miracle and happy spirited baby girl is turning two years old. We love her so much!

Happy Almost Birthday Kyleigh Grace!

A little delayed...post Thanksgiving Post

2010-12-06T16:05:00.000-08:00

What am I thankful for this year?

I just spent the last hour re-reading former posts here on my blog. I began at the beginning before Kyleigh was even born and read all the way up to this post. Wow! Not, wow as in I can read, but wow what blessings have been given to us. Here is a list of my wow moments in review---

1- my church

2- my God

3- my family (mom, dad, husband, grandparents, great-grandparents...)

4- my friends (all of them)

5- my children

6- my neighbors

7- our doctors (both pediatrician and at Duke)

8- our struggles

9- our triumphs and defeats

10- major changes

I was reminded of the powerful prayer warriors that surrounded me during pregnancy and following Kyleigh's birth, prior to surgeries while re-reading this blog. I was reminded that even when I was at my lowest, God was still there and even when we felt defeated, later on we would see we still won. I was reminded of the many struggles and many tears shed over the heartache and sickness but then at the same time show the growth and major changes that both girls have gained and how beautiful they are to me. I was reminded that I have the best doctors in the world taking care of my children and that I even have personal cell numbers for some of them. I was reminded that my neighbors have and always will come to my call when needed. I saw through pictures and writing that my family is supportive and loving and strong. This is what I'm thankful for and this is what keeps me going.

Happy Post Thanksgiving Everyone...blessings to all as you prepare for Christmas this year.

Annual Family Pictures

2010-11-24T08:36:00.000-08:00

Me and My Girls

The Four of Us

Despite it all, we managed to get a few decent pics. Just wish Kaitlyn's dress was straightened in this shot because it was the best of the many taken.

Bye-Bye Baby Food and Bottles

2010-11-11T17:18:00.001-08:00

My little girl is becoming a big girl and I am so excited. I am giddy as a kid on Christmas morning. We have battled feeding this child since birth. It began with NICU lactation nurse telling me to be patient but she would finally latch on and then trying her on this horrendous bottles for cleft palate called Habermans (which cost $50 each) and still struggling with feeds. Then we found out that nursing was not an option for her and moved to using a pigeon valve bottle that didn't work so we took the valve and tried it on every possible bottle and nipple made on the market until Dr. Brown's traditional bottle nipple was found to be a success. We were able to remove the valve at the end of the summer at 18 months old and just give her a bottle. Then she transitioned to taking her milk just last week in a Nuby bottle that was meant to help her transition to a Nuby cup. Then today we moved to the Nuk, silicone, sippy cup and it was a HUGH success! She drank 10 ounces of formula at bedtime tonight without any air sucking, crying, playing around, or any problems at all. WOOOOHOOOO!!!!

On top of also giving away all of her baby food a few weeks ago to our neighbors and friends with babies, it has really put the cherry on top of my happiness. She will always be the baby but she is finally showing signs of normal childhood. I can feed her cut up grapes, green beans, turkey, chicken, and give her soy milk formula in a sippy cup. This is a very liberating feeling for me as a mommy. I know that she would not have entered kindergarten with a bottle in hand but the fear of her using the bottle as a crutch (much like some kids use a pacifier) was eating me up with guilt and jealousy for the moms that never face this challenge. I am super proud of Kyleigh for her willingness and cooperation and the smooth transition she has made in such a short time span of 2 weeks. Go Kyleigh..Go Kyleigh...you are becoming mommy and daddy's big "little" girl and we are so very proud!

Landon Scotty Wallace---Remembered Always

2010-10-31T19:01:00.000-07:00

Picture taken on Wednesday October 20^th at the Riverbanks Zoo in Columbia SC. We always went to the zoo on Landon and his Mommy’s birthday. October 20^this his Mommy’s birthday.

To the dear friends and family of Landon,

On Thursday, October 28^th, at approximately 9:15am our oldest son Landon Scotty Wallace went home to be with Jesus due to a suspected aneurism (bleeding) in the brain. Landon was transported to Catawba Memorial and then by helicopter to Brenner’s Children Hospital at Baptist Hospital, Winston-Salem NC. On Friday, October 29^th, he was pronounced brain dead. At that point, we decided with the grace of God to donate Landon’s organs because this is exactly what Landon would have wanted. He was the most caring, generous and loving little boy. After 29 hours by Landon’s side holding his hands and kissing on his body, Landon’s body was used by God to perform miracles for at least three other children. The hospital is performing an autopsy to find out exactly what happened because the doctors want to help protect us from possibly having to go through this again with our youngest son, Noah.

We are comforted by knowing that Landon is with Jesus, whom he loved soooo much. We still need your prayers for grace to help us through this so we can be strong for our little Noah. Thanks to your prayers the blessings have been pouring upon us.

So many of you have sent notes and left messages asking if we are ok and what you can do. Right now, pray….and if you feel that you need to do more please send a donation to the Brenner’s Children Hospital in memory of Landon Scotty Wallace to help other children and their families that may be going through the same heartache.

Currently, the arrangements have not been finalized but we believe it will be on Wednesday. We will send a note as soon as we know the final arrangements.

Thank you for your love. Remember Landon’s sweet smile.

We love him sooooo much.

Scotty and Eugenia Wallace

Lollipops and Smiles

2010-10-26T17:54:00.000-07:00

Today my girls were all smiles when I picked them up after school. Kaitlyn had a full and fun day of Fall centers and celebration at school. She was excited because mommy came and helped work the cupcake station in the room where the kids made an edible spider cupcake. Kyleigh went to school wearing her lady bug outfit so that she could trick or treat through the school building. Once home, I let Kaitlyn get out her ghost lollipop from school. It was a Tootsie Pop and of course my non-chocolate fan kid didn't want it so she gave it to me. Kyleigh seemed way too interested in my lollipop so I opened up her miniature version of the same lolly from her trick or treat school bucket. It was a sight to see. She was super excited. She was all about that lollipop and wanted more. So cute to watch her first experience with candy. Then I opened a cherry Pixi stix and put some on her tongue and Kaitlyn's tongue. They both loved it. Kyleigh indicated her approval with "mmmmmm" sounds and signing the word more over and over again. Welcome to baby crack---candy! We don't allow much candy for Kaitlyn and this will be Kyleigh's first introduction. However, I must admit the trick or treating and candy is more for me and dad. We always take and put it on top of the fridge and slowly but surely it disappears until Kaitlyn forgets it even existed to begin with until the next holiday rolls around.

Kyleigh also wore her eye patch for a full hour today at school. YIPPEEE!!! I am so relieved and so very proud that she left it on for so long of a time. Way to go Ms. Kimberly and Ms. Jessie as I am sure it took some work on their part as well.

Going Up...and Down...

2010-10-25T16:31:00.000-07:00

So today I felt like I visited a large theme park full of emotions where the entrance fee was my co-pay ($60 - times two doctors). I drove to Duke this morning and all the while praying that we would hear good news. On the way there Kyleigh got so upset she pulled her hair out and got one arm wiggled free of the 5 point harness system. I managed to pull over safely and secure her again to her seat and then maneuver her seat closer to mine so that she was within arms reach. It helped a little but she was still unhappy for a majority of the trip. We arrive at the Children's Hospital at 8:42 for an 8:45 appointment. Not bad considering I had left late and pulled over on the side of the road.

Usually after check in you have a small waiting period before being called back. So I decided to feed Kyleigh her morning ritual of oatmeal. She was loving it and we were on bite number 3 when they called her name. Huh?? That was fast. So I manage to gather my child, diaper bag, stuffed Winnie the Pooh, spoon and bowl of oatmeal and follow the nurse. Amazing how she must have thought I had everything under control as the door almost hit me as we passed through and she never once offered to help with anything. One of the first people to really make me not smile so much today.

As she weighs Kyleigh, measures Kyleigh, and starts to take her blood pressure...I see my child raise her little foot to the nurses face as if to say, "smell it". I laughed so hard. It was so cute. She knows her little feet get stinky in socks and shoes and she was being playful with her nurse that evidently was a big ol' grouch and didn't see the humor in Kyleigh at all. Strike Two!

Then we go to another room and wait and Kyleigh finishes her now cold oatmeal but she doesn't seem to mind. A very nice lady came to take us back for the EEG. She is the same nurse that has performed the test on Kyleigh since she was tiny. Kyleigh was an excellent patient. She hugged her Pooh bear and made it light up and sing. She smiled and laughed at the nurse. She only got fussy when the nurse started to pull off the sticky probes. Then, we returned to the other room to wait for the doctor.

Kyleigh danced about the room and was in very good spirits. The doctor came in and said he liked what the EEG showed him today. He listened to her heart from the back and front of her chest. He measured her pulse, checked her toes and fingers for blood circulation, asked me some questions and then gave me the best news ever----

"Mrs. Foster, I don't hear the murmur today and based on the test the hole in her heart may have closed up on its own or is very small. We won't know unless we do an echo but I would like to wait until she is a little older so that we don't have to sedate her. So, how about come back when she is 4 or 5, in two years, otherwise she is looking great to me". I was elated!!! Two year check up--sweet!

So I am now on top of the mountain and my stress level has decreased dramatically. I load up Kyleigh, the bag, the toys and head across the hospital to the eye clinic for our next appointment. We arrive at 10:15. Our appointment was for 10:45 or as soon as we could arrive. From the looks of the waiting room we were in for a long wait. There were so many people and lots of new patients it seemed. Kyleigh sat and ate, she played, she won the heart and smile of our neighbor waiting on the doctor as well. We finally get called back at 11:40 and it was to do the picture cue cards. These cards are large boxes on a gray background and within the boxes are stripes of white and black that start out bold and get fuzzy and closer together as the box decreases in size. They ask Kyleigh to look for the box as they turn it every direction and change the location and size of the box they present her. The doctor first did it with her using both eyes. Then she covered the left eye leaving her to use the right eye (presumably the worst since it has had more surgeries and pressure problems) but she does very well. Then she covers the right eye and has her repeat the cards with presumably the better eye.

Ker..

Pl...

unk....

as my heart falls to the floor. She failed the exam. She can't see at all from the left eye. WHAT??!! Her best eye..she can see that try again I plead. They try again and Kyleigh doesn't respond to the card. They move the cover to the left eye and repeat the right and she can see most of the cards. I don't understand. What does this mean? This doctor tells me that Dr. Freedman will be with me shortly and explain it all but if I would just go back and wait in the waiting room.

GRRRrrrrr...Strike 3!

I am now left feeling confused about my child's vision in a waiting room that I have been in since 10:15 and it is now after 12:15. We wait and wait and wait. Kyleigh eats again and takes some of her bottle. She fusses and squirms now because it is almost 1pm and she is tired. The happy neighbors are getting restless and somehow not as impressed with Kyleigh's cuteness as she now whines and fusses about the sofa wanting so badly to nap and repeatedly says to me "bye-bye mama" as if to say "let's GO".

2pm...we get called back to Dr. Freedman...she looks Kyleigh over. She checks her pressure with the Icare kit and says, "great news..pressure is NORMAL"... I am back up on the mountain and so happy until...she shakes her head (never a good thing). She looks again. She does an ultrasound on both eyes. She asks me to hold her a certain way and she puts on the helmet to look one more time. Dr. Freedman evidently was having trouble seeing Kyleigh's retina at first but didn't want to scare me although I have learned her body language now and knew that something wasn't quite right. She couldn't get Kyleigh's eye to respond with what they call a "red reflex". However, the ultrasound shows everything was okay and her pressures are great.

Dr. Freedman proceeds to tell me that Kyleigh's vision in her left eye is significantly lower. It appears that it has become lazy and the right eye is doing most of the work. Therefore, the solution---patching the right eye.

Noooooooooo...I scream inside my head. We lived the patching with Kaitlyn at this age and it didn't work, it was a nightmare. However, I will do anything to try and avoid surgery and to help my child's vision. Although you are asking me to put in darkness her better eye 1-2 hours per day for the next 6-8 weeks. My heart sinks again.

We leave the eye clinic and head to the cafeteria because my egg breakfast is gone and I'm starving. I am on the brink of tears from pure emotional ups and downs when the cashier completely ignores me and pays closer attention to her friend and a ghetto fabulous bracelet. Meanwhile, I stand in the line with money in hand, small child in my arms, diaper bag dangling, and a tray of food. I could care less that your friend just bought a bracelet. I could care less that you make minimum wage to take my order right now. I want you to pay attention to me. I am not just another worker on my lunch break. I am a mom that has had a trying day at your hospital and I need to get my food and go home. It must have been the way I said to her, "excuse me but would you like me to pay for this food now or after I eat it" that made her decide to ask if I would like some help. Strike Out!

As I scarf down my pizza and choke back the tears Kyleigh wiggles close into my body. I just wanted to sit there and hold her but I knew we had to head home. I started the trek back across the hospital to the parking area in the pouring rain. Kyleigh fell asleep on my shoulder. She didn't even budge when I put her in the seat. She slept the whole way home. I listened to KLOVE and sang and cried both tears of joy and sadness. I am so very thankful that Kyleigh got two praise reports today- heart and pressure. I am so saddened that her vision is getting worse and that we are faced with the battle of patching again.

So although today had many ups and downs like the roller coaster at a theme park, it wasn't the worst day. The ups made me smile and the downward loops gave me a pit in my tummy, but we are going to be just fine. Even tonight Kyleigh proved once again you can't keep that baby down as she grabbed hold to a banana and took a big bite like a big kid for the very first time. I was so proud. She will be just fine..this I know.

Viruses

2010-10-19T14:57:00.000-07:00

They seem to be lurking around every corner waiting to attack Kyleigh. She starts to get better, bounces back from her virus/cold, and then all of a sudden spikes another fever and the vicious virus cycle begins again. We have been dealing with this since early September. I thought I was ready for Fall. It use to be my favorite season. But now, with the crazy temperatures fluctuating and the sickness it brings with it, I loathe Fall. I find myself battling whether I should be at home with Kyleigh, put her in private care, or deal with the fact she is going to pick up every illness at Gateway but have a stronger immune system later. In fact, Kaitlyn (knock on wood), seems to be doing well this year and for the most part last year had few illnesses. She stayed sick as a little one too and it has finally built up enough immunity to fight off the small colds and viruses. I get tired of hearing, she'll grow out of it or it will get better once Fall and Winter pass. Really??? She is still little and I can't make Fall go away any faster. Ugghhh...pure frustration right now. I can only hope we have a healthy household soon and can keep it for the upcoming holiday season.

Can you hear me now?

2010-10-11T16:39:00.001-07:00

So Kyleigh went for yet another Audiological testing session today and to visit the ENT doctor. Never mind they just did these tests one month ago at the cleft palate review team meeting but they insisted we keep our regularly scheduled appointment and do it again. The drive down was unbearable to say the least. Kyleigh was cranky and didn't fall asleep until we were 10 minutes from the clinic at the hospital. I almost cried too.

The appointment was painful because she was even more cranky at this point and she was uncooperative with the sounds and lights. She could hear them but wouldn't respond so that she could score the points. Instead, she would wait until the sounds and lights went off and then turn and wave bye-bye and say "bye-bye". As if she was mocking the entire procedure. Not to mention the tech plays with toys just out of her reach as a means of distraction so that she won't stare at the section of lights and toys the entire time. I get that part but why can't she hold a toy. It is complete baby torture to keep showing my kid a toy and when she reaches for it take it away. Anyways, needless to say she failed her hearing test. Then they proceeded to do the test with the ear plug inserts, we did two different ones. She passed. They said, thanks for coming and you can see the doctor now. The doctor says, "Ear tubes look great. They are probably going to fall out in the next 6 months. So we will see you then". Really?? Sixty dollar co-pay and lots of distress later we are on our way home and she again is fussy. But who can blame her, right? I am just thankful that we don't have to make the trek to Durham again until the end of the month for her cardiology and eye exams.

On another note, continue to pray for my mom. Her procedure (surgery) is this Wednesday. Also, a friend of ours is having surgery on Thursday to donate his kidney. Pray for John, Robbie and the surgeons and their families. Thanks.

Update on My Mom

2010-10-04T17:39:00.001-07:00

Mom saw a cardiologist today and they determined she does have some heart damage. She is scheduled for an heart catherization on the 13th of October to see if she has blockages that are causing the low functioning of her left ventricle. If they find blockages they will put in stents. Before they put her on any medication this must be done because her blood pressure is running too low and it could cause her to have a heart attack. All this said, please continue to pray for healing.

Genetics Testing

2010-09-25T17:39:00.000-07:00

The genetics counseling doctor called me the other day and said the results had arrived from the lab regarding Stickler Syndrome. Kyleigh had met the criteria of the syndrome based on the checklist, or at least enough of the criteria to warrant testing. Seems that the test cannot be 100% accurate. Kyleigh's blood work came back inconclusive meaning as far as we can tell she most likely does not have Stickler's Syndrome. The doctor explained that she may have Stickler-like Syndrome. What does this mean? It means, we do more bloodwork in about 6 months. The doctor doesn't want to just accept that we have yet to find a link connecting Kyleigh's birth defects and development to a common cause. We agree that it would be helpful to have a name to call it so that every doctor, teacher and care provider can best work with Kyleigh if we have an understanding of what the future holds for her development and medical health. For now, we go on with everyday life and meet with the doctor at some point next summer to draw blood for a microarray screening which can lead to a broader spectrum of genetic chromosomal testing.

On another note, please keep my mother in your prayers as she has been experiencing a decline in health recently. Her doctors finally conducted an echocardiogram that showed her right ventricle is not pumping properly. This could be the culprit of her severe fatigue and chest pains. She is waiting to get connected with a cardiologist and go meet with them to determine the course of action. Until then we pray for healing and strength for her as it has been very difficult for her to do even the most ordinary tasks lately.

Blessings to All.

We have come a long way...

2010-09-15T12:06:00.001-07:00

Today we visited with Kyleigh's team of doctors' at Duke Children's Hospital. The team meeting is very much a carousel of doctors and specialists meeting and asking questions. It began at 8:45. This was our 4th visit since her birth and since that first visit we have come a long way! They all were awed and amazed at her growth and development over the past 20 months. We met with the Audiology Department first and they conducted hearing screenings. In the past Kyleigh has done very well for these screenings. Her last ABR (under anesthesia) showed that both ears were working properly. Today she was asked to respond to noises in the environment by looking towards the noises and she would be rewarded by animals and lights. It was cute to watch her respond. After a series of times she signed "finished" and looked at me like that is all I want to do with her silly grin on her face. It was so cute. Then they put headphones on her and wanted her to respond in the same fashion but she was frozen in time literally. They said we will have to wait and try again when she comes back next time on the headphones. During one of the other screenings they placed foam pieces in her ear and told her I am going to take a picture and I will be all done by the time I count to 3. He said "1" and to my surprise Kyleigh said "doo". WOWSERS!!! This was the first I had heard her respond to counting. Later we were counting to 5 and I would say 1, she said "doo", 3, "or", 5, "ix", and so on until I definitely think she counted to 10. My mom was a witness and we were completely amazed.

Then off to wait in the waiting room for the next appointment. Next we met with the Speech Therapy team where they discussed her eating, drinking and word development. She said "poon" for spoon and "icken" for chicken, along with all of her most commonly used words at home "up", "dowwwwn", "bye-bye", and others. By the end of the session she had won them over to her side and gotten a sticker for being so cute. She even ate her turkey for them so they could see that she was no longer endangering herself eating solids. Great visit so far. Back to the waiting room we go..

10:30 we took a break and went to the bagel shop downstairs (new addition to the Children's Hospital) and it was very good. Kyleigh enjoyed her second snack of the day as well as our water.

11:00 we are ready to be seen by the ENT doctor except he has been called into surgery and his back-up plan doctor is in the OR too so we see the Nurse Practioner on her team instead. She said Kyleigh's ears looked good despite some "webbing" or wax build up which could explain her digging in the ears. She thought she was experiencing some Allergic Rhinitis and needed a nasal spray to open her nasal passages more freely.

Then back to the waiting room. By this point happy go lucky Kyleigh was tired and cranky and hard to convince to stay all smiles.

11:45 we get called back to meet the Orthodontic-Cranial Facial Surgeon (Dr. Santiago) for the first time. He was really nice. We spoke of her interesting way she has gotten her teeth and that they are coming in very slowly. She currently has 6 teeth at 21 months of age - 2 bottom molars, 2 top molars, one bottom tooth in front, and top right front tooth. He said we should worry too much and they will continue to follow her development of bone and physical structure as she ages. If by age 5 she doesn't have all 20 teeth then we will do x-rays and determine if we need to have a Dental Savings Plan (much like a college plan) for her dental needs. Geesh...I hope not.

Following our meeting with Dr. Santiago we met with Dr. Georgiade her Cleft Palate Plastic Surgeon. He was very pleased with her talking, eating and overall appearance of palate. He then agreed that we should be focusing on chopped and small bites of food so he changed her diet order for school and sent us on our way.

Overall, it was a great visit. Everyone was so positive. Kyleigh was so good. She kept my mom and I laughing most of the time. Duke has become a place that feels almost like home. It is a place where they all know her name and we see others going through the same thing. I felt bad for the mom that was struggling with her infant and feeding using the Haberman bottles. I remember all too well the pain of those days. I smiled at the mom that was thrilled her son was eating baby food and not having it come through his nose. Familiarity...everyone has a story...similar walks...similar pain...but very different all the same. That is what I gained from today's visit.

Each year we will return for this team visit and in between we will have separate check ups with specialists. For now, we bask in the joy of good news and no looming surgeries around the corner!

Because God Gave Us You

2010-09-07T16:49:00.001-07:00

Tonight I read Kaitlyn a bedtime story that brought me to tears. It is called, "Because God Gave Us You" and it was given to us by friends when she was born. I have read it a couple of times since then and we even have a copy of the book, "Because God Gave Us Too" but I have never really listened carefully to the words until tonight. As I read to Kaitlyn all snuggled up beside me in the bed all of today's worries, woes and frustrations melted away. She was so intent on hearing my every syllable and I was careful to use inflection of my voice to help set the tone. As I read the words, "Mama do you wish you ever had a different baby" and then Mama Bear replies, "No, not ever, never ever".

"Why?" asked Baby Bear. Mama replies simply, "Because God Gave Us You".

This is so true. No matter what, God gave us two beautiful girls - Kaitlyn and Kyleigh. I am so blessed! I love them and I love the special moments we make each and every day that help erase the hard moments away.

Kaitlyn's First Day of Kindergarten

2010-08-25T17:52:00.000-07:00

Kaitlyn was a trooper today. She was so excited to get out the door and to her new school. She had fun. She was all smiles. She came home with her note that said "Kaitlyn was a perfect student today". We are so proud!

Here are a few pics of her day.

Kaitlyn and Ms. Stuman at lunch time
One more hug and kiss in the classroom before starting our day. Okay mom, I'm going to be fine with my teacher Ms. Trautman.
Made it to school and super excited!!
"I'm ready to go mom"!
This day was bittersweet. We long for our children to grow and develop and hit milestones but at the same time we mourn the innocent days. This marks the beginning of her journey in public education. She has 13 years and hopefully she will choose college. Ask her and she will tell you she wants to grow up to be a doctor one day. Love this kid!

Ponders of a Mother's Heart

2010-08-16T09:36:00.000-07:00

So I have been wondering about so many different things lately related to parent hood and children. Why do some of us, wishing like others to enter parent hood with easy going children, end up with the most challenging kids? Why are children born already facing problems and behind the developmental scale? Didn't I deserve to have happy and healthy children? Don't get me wrong I know kids are going to get sick with colds and fevers. But surgery for both my girls before 6 weeks old and then several to follow is the reason I have so many unanswered questions.

I celebrate that Kaitlyn is a happy 5 year old that only seems to struggle with vision, transitions, and some social delays but otherwise is on track now. But it wasn't always so easy with her. Then along came baby sister that sent us up in a tornado of a whirlwind. She has fought through many illnesses, poor growth, surgeries and delays. Now she is a happy and for the most part healthy almost 2 year old that is just showing her differences in other ways. She can walk now, she can say a few words, and she is growing. Yet, it is not the norm.

I long for Kaitlyn to speak in fluid sentences that resound like all brilliant 5 year olds. I wish she didn't know that she couldn't see out of her one eye and that it didn't cause her struggles. I wish I could turn off the switch that ignites in her when she gets angry and frustrated or when she struggles with transitions. But I love that she can talk to me, has an appetite for any food you offer, loves books, and is eager to learn.

I long for Kyleigh to make it through an entire year with only facing colds and teething temperatures. I dream of the day she picks up a chicken nugget takes a bite, chews, swallows and asks for more with words. I pray she continues to grow in leaps and bounds and catches up with the other highly typical 2 year olds that talk, run, and eat what their parent puts in front of them. I hope she outgrows milk allergy and can eat real cake and ice cream.

These all seem so silly. But I doubt that any mom out there reading this would dare say they would ask God any less than just simply to make their children happy, healthy, and normal. When I say normal, I mean to blend in. Hardly a week goes by that someone curious doesn't say something about Kyleigh's differences to me or asks why Kaitlyn is giving them that "look". Sometimes they are people that know us well, at least I thought they did.

Kaitlyn isn't giving you a "look" when her eye turns the opposite direction. She is trying to see the details of you. Kyleigh isn't "sleepy" when her eyes are squinted, she is struggling to see and her eye lids are made like that. Kyleigh isn't a brat because she won't eat, she just didn't wake up one day like most children and start chomping on table food. Kaitlyn's giggles are silly and bountiful but they are often a means of covering up her flaws. Kyleigh is smarter than she is able to tell us right now but one day she is going to rock this world.

I guess, I needed to write this down to reaffirm that I believe in my children and their special gifts. I wish I could change their differences that hold them back and exchange them for talents to make them stronger. But the fact remains, I can't. I didn't do anything wrong while carrying them, it isn't because I was a rotten kid and they act like this because it is in their genes, it isn't because of anything negative...it just is what it is and I continually am faced with learning to accept it. I continually have to evaluate my jealous attitude towards others for having "normal", "highly typical", and "healthy" children 24/7 all 365 days of the calendar year. I long to squash that jealous monster that keeps creeping into my heart and continue to celebrate the children I have. I only have them for a little while and they won't stay this way for long.

I love my family. I love my husband and his support. I love how he interacts playfully with the girls. I love my girls and how they long for interaction with me and their dad. I am thankful for the healthy and happy times we have had this past summer. I hold my breath in anticipation for fall and winter to begin knowing that the sun only shines briefly and when that rain cloud comes I hope to be a little stronger in my faith and ready to hold up my umbrella.

Little Delayed Update

2010-08-12T17:32:00.000-07:00

We had an amazing family vacation to Carolina Beach July 31st-Aug4th. We stayed in our friend Heather's family place and it was perfect. We spent time on the boardwalk, beach, pool, arcade, and just enjoying each other's company. We visited the NC Aquarium and also took the opportunity to ride a "family" bike with the girls. It was so fun. We have pics and I can post them soon.

This past Tuesday Kyleigh went in for her blood work to confirm or deny the possibility of Stickler Syndrome. I was so nervous about the whole thing because everytime she has had an IV or blood drawn or shots I have cried along side of her. But this time was surreal. She sat on my lap, looked at the nurse, looked at her arm, I sang songs, and she just sat while they drew the blood. NOT A SINGLE TEAR! She even kept the bandage on afterwards and was curious but not enough to pull it off. The lab tech was pleasantly surprised and I was thrilled. I cried afterwards just as a release of all the built up emotions but was so very proud of my amazingly brave little girl. We should find out something in approximately 6 weeks. The test was sent off to Tulane University in Louisiana, the only lab that is equipped to complete the test on the specific DNA chromosomes.

School is right around the corner for us. Dennis and I have had workshops this week in preparation for the new year. Kaitlyn has gone back to school shopping already and was excited about her new items of school supplies and clothes. However, she still has that anxiety of transition that I am sure will disappear once she is in the classroom and making friends. Kyleigh will continue at Gateway Education Center this year in one of the rooms that is led by a classroom teacher. We also opted to continue the extra occupational therapy at home during the school year in efforts to move her off of baby food.

Until next time, we are going to enjoy the last few days of summer at the pool and with friends and family and will post pics soon.

GI Appt Update

2010-07-29T06:37:00.000-07:00

Kyleigh went to see Dr. Ulshen for the follow up appointment from 3 months back. To say I was nervous would have been an understatement. If her reflux had not improved and if her weight gain had not shown improvements then she was going to be a candidate for the surgery to fix the band that allows the reflux to flow. I don't know how to spell it sorry "nisen". Anyways, when we were there 3 months ago she weighed 18 lbs 4 oz on their scales. Yesterday she was 20 lbs 1 oz. So despite her stubborn ways of eating she is still gaining and she even looks "fleshy and healthy". So we don't have to return to GI for 6 months unless otherwise needed. If her reflux comes back with a vengeance again we can look into have them go in with a scope to check the severity. Right now I chose to keep her medicated, keep using thick-it in her juice and water, and go with the good news. So glad that appointment proved uneventful. Now, we can put all the surgeries behind us and continue moving forward watching her grow and develop new skills.

5 Years Old

2010-07-25T18:09:00.000-07:00

Pretty Purple Nails
Five years ago at 2:36 am on July 26th I was blessed with a beautiful small bundle of pink. Kaitlyn Ann was born with a head full of hair and a lot of spunk. She is so smart and changes in her occur on a daily basis it seems. Today she enjoyed a cookout with the family and in preparation for her big day we painted her toes and fingernails using polish that was in a present from her baby sister Kyleigh. She loved the purple polish and we are hoping it continues to deter her from biting her nails. Tomorrow will begin with her opening a special present from mommy and daddy, a Leapster Explorer, which is a handheld game system that can also hold e-books and videos as well as play games for learning. The day will end with special time spent with her little friends at the pool. She is super excited and we are too. It is fun to watch your child be so anxious in anticipation for fun and happy times with friends and family. She is also looking forward to our trip to Carolina Beach this weekend except her sense of elapsed time is off a bit because she thinks we leave after her pool party and we really don't leave until Friday- she'll figure it out soon enough.

So, happy Birthday to my BIG GIRL! Mommy and Daddy and Kyleigh love you SOOO much!!!

Kyleigh's First Steps

2010-07-17T09:44:00.000-07:00

This morning I heard a gleeful squeal and turned to see Kyleigh standing up on her on and practically running across the floor towards the dining room table and play kitchen. She was laughing and I was so thrilled I shouted, "you are walking..yeah!!" and of course she then plopped on her butt and turned around as if to say, "no I wasn't". That's my girl! Anyways, she has mostly still scooted around today but I did catch her in the walking act a little on my phone and thought I'd share with everyone. It won't be long and she will figure out this walking business is so much better than scooting. I'm such a proud mommy right now. What it reminds me is that Kyleigh will do things in her own time when she is good and ready. Now, when will she be ready to eat real food I wonder?

Watch Kyleigh Move...

2010-07-13T17:01:00.001-07:00

Kyleigh is so close to walking. Today she was a cruising little lady. She would go round and round in circles at her sister's princess table and the chair at the pool. Sometimes she was moving pretty quickly and didn't even realize that she wasn't holding on to the table or chair everytime. It is just a matter of time and practice before she is truly mobile. Woohoo!

Eye Update for Kyleigh

2010-07-12T17:41:00.000-07:00

We had a very busy day today beginning with Kaitlyn at the allergy doctor where she received a good report and doesn't need to worry with allergy meds again until the fall. Then off to swim lessons for Kaitlyn. Then off to Duke Eye center for Kyleigh. We arrived at Duke at 2:45 only to find out that Dr. Freedman was running way behind schedule and her 1:30 patients had not been called back yet. Geesh.. it was going to be a long wait. Needless to say, I hate waiting with two small children in tote but my mom was there to help and given we received the best of news today that made it some better.

Kyleigh's pressure is equal in both eyes and steady between 9-12. These are GREAT numbers!!! Her optic nerves and retina looked beautiful and her corneas are crystal clear!! We were all so thrilled. Dr. Freedman was tickled and even Kyleigh threw her hands up in the air to acknowledge her approval. Both girls were excellent today at their appointments. We finished at 6 and headed home to put an end to our long day. We return for Kyleigh to be rechecked in 6-8 weeks. Praise Him for a good report and a good end to a very busy day!

Genetic Testing to Come

2010-07-11T17:44:00.000-07:00

After speaking with Dr. Rietnauer we are going forward with genetic testing on Kyleigh. The appointment will be early in August and blood will be drawn and sent to a lab at Tulane University. The testing is very specific to three genetic strands and they will focus on two of the three strands that Kyleigh exhibits characteristics for the syndrome. It is called "Stickler Syndrome". Here is an explanation of Stickler's Syndrome from the "SIP-Stickler Involved People" brochure.

Stickler Syndrome is a genetic disorder affecting collagen throughout the body. It is an autosomal dominant genetic condition. It occurs equally in male and females and the traits will be exhibited in the child if the gene is passed on by the affected dominant parent. It is a progressive disorder, so the symptoms are more likely to worsen and become more severe with age. It is characterized by problems with vision, joints, and hearing. It is a disorder not a disease, so people can live a long and happy life. It is estimated to be in 1 in 7500 people but often goes undiagnosed or misdiagnosed. When a mother or father has the dominant gene there is a 50% chance that it will pass to the child with each pregnancy. A parent can be the carrier of the gene without having symptoms themselves. This syndrome does not affect life expectancy or mental capacity but it does affect the health of eyes, ears and joints in the person with the gene mutation.

I have done a lot of reading on the Mayo Clinic website and other resources provided by our doctors. It seems that Kyleigh exhibits so many of the characteristics for this disorder. There is a diagnostic criteria chart (12 points) where a score of 5 or more indicates Stickler Syndrome. It can be found at www.sticklers.org and our doctor used this chart to determine that further blood testing was necessary.

My greatest fear is that she has the harshest form of this syndrome and could very well face blindness as it is a progressive disorder and her vision is already weak. However, we will continue to put her in the hands of God and trust that he has her life planned out.

On a side note, we go to the eye doctor tomorrow at Duke for a follow up to her surgery in April. I hope to hear that her pressure is still stable and that her eye is healthy. Kaitlyn will also see the allergy doctor tomorrow for her annual check up.

Recent Blessings

2010-06-30T18:45:00.001-07:00

Kyleigh has really taken off lately in her growth. She is trying so many new things. She has started standing from a complete seated position in the middle of the floor. She is trying to eat chunks of food (small chunks). She is self feeding some. She is gaining more and more sounds. Her favorite and mine right now is "yehp". So cute when you ask her a question and she says it to indicate her approval. She is getting another tooth. She is gaining weight still. Amazing to see the difference in this little girl in comparison to where we stood just a few months ago much less one year ago.

Kaitlyn is growing so much too. She is funny with her antics. Today Kyleigh started crying because I told her no and Kaitlyn parroted, "I'm sorry you are a big girl now and you don't always get what you want to get" "sorry" "ok" "don't cry" "no-no cry baby". Oh my goodness...so funny!

Kaitlyn has developed a sense of her surroundings as well. She knows that my grandfather is near death and she wanted so badly to go see him the other night. She started to cry because she said she wanted to tell him goodnight before he went to the sky (this is what she calls heaven). She had so many questions and I was honest and tried to be as gentle as possible so not to set fear into her that some one just comes down and takes your spirit and you die.

We went to visit my papaw with both girls and they were so happy to see him. He was all smiles when they entered the room. He kissed on Kyleigh and even tried to tickle Kaitlyn. Such sweet moments. Kaitlyn played her violin for him and sang one of her songs. She told him she was praying for him and Granny (that is what she calls my mamaw).

In addition to these blessings, today our nutritionists stops by and brings us not 1, not 2 but SEVEN cans of formula for free. They were from another family she services that also attend Gateway and their child couldn't use the formula anymore. WOW! Really?!! Free stuff? Awesome! That is almost 2 months of bottles right there and such an amazing gift.

Speaking of bottles, we are going to start offering Kyleigh milk in her sippy cup just once a day to get her use to taking it from a cup and weaning from the bottle. However, it is important she still keeps up her nutritional intake from the bottle so she will continue getting bottles of formula for now.

We are frustrated with some of her recent changes but at the same time celebrate the normalcy of them. She is a typical 18 month old when it comes to her clingyness to mommy and daddy. If we are present in the room then she is going to be on us, near us, and engaged with us. If we are out of sight then it is out of mind for the time being. She understands "no" and despises it. Again- normal. So thankful for the normals in her life.

From Heaven...

2010-06-24T19:31:00.000-07:00

Taken from a conversation between God and his angels -- author unknown--

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side"

All I can say is .. "wow". If this is true, then I am humbled. I do take joy in the ordinary "first sounds", "first word", "first bite of food", etc. Everyday I hold my breath waiting on more miracles for both of my girls. Wow...I sit here amazed and how his came right on time.

So much changing...

2010-06-17T19:59:00.000-07:00

Kyleigh is just making drastic changes lately. She is really working hard to stand up unassisted. She is interested in what others are eating. She finger feeds more and accepts more "table" food in small bites at a time. She is talking more and making more sounds. She is cutting more teeth. Every single day brings about a new change for her. It is amazing to watch her grow.

Kaitlyn is becoming more and more the big sister. She really enjoys having 1-1 time with mommy or daddy. She likes playing with Kyleigh even when her sister seems to want to be left alone at times. She is learning to swim and doing well with getting in the water without tears the entire time.

Dennis is working hard still despite it being "summer" vacation. He has begun his study for a doctorate of education. It requires so much reading and writing that almost every free moment he has his IPad in his hands.

I am still in the graduate classes for the GCS Math Cohort and UNC system program. It requires me to take a few Saturday courses and two classes in July during the week. I am hoping not to have it totally ruin my summer.

I am looking forward to spending time by the pool with my girls on a daily basis, preparing Kaitlyn for Kindergarten, and working through Kyleigh's goals in therapy. Notice I didn't say I'm looking forward to housework, that hasn't changed a bit. I wish there was a house fairy that came through at night while I slept to do dishes, laundry, dusting, mopping, vacuuming, bathrooms, etc. Oh well, at least I can make a schedule and maybe stick to it for the next several weeks.

This poem speaks volumes to my heart.....

2010-06-10T18:51:00.000-07:00

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!

It's time again for another birth.

Said the Angels to the LORD above,

This Special Child will need much love.

Her progress may be very slow,

Accomplishments she may not show.

And she'll require extra care

From the folks she meets down there.

She may not run or laugh or play,

Her thoughts may seem quite far away,

In many ways she won't adapt,

And she'll be known as handicapped.

So let's be careful where she's sent,

 We want her life to be content.

Please LORD, find the parents who Will do

a special job for you.

They will not realize right away

The leading role they're asked to play,

But with this child sent from above

Comes stronger faith and richer love.

And soon they'll know the privilege given

 In caring for their gift from Heaven.

Their precious charge, so meek and mild,

Is HEAVEN'S VERY SPECIAL CHILD.

by Edna Massionilla (adapted for girl version)

Update on Girls

2010-06-07T19:23:00.001-07:00

Kyleigh's eye color has resumed back to a normal whiteness. Her pressure is at a "6" which is appropriate for her. The retina is good so they aren't concerned with the pressure being too low at this point. She returns in one month for a follow-up appointment. The white goop that has been coming from her eye may be stitches dissolving from the surgical site.

Kaitlyn graduated pre-K on Friday. She entered pre-K at the 15th percentile and graduated at 93rd percentile. I am so proud of her. She has recently experienced several meltdowns that resemble behaviors we dealt with when she was much younger. We are currently evaluating the circumstances and trying to figure out what could be happening. I only hope it is short lived and she will return to being our big girl soon.

In less than a week it will be summer vacation. We got a taste of it by visiting the pool this past weekend. The girls loved it. Kyleigh thinks the toddler pool is just a big bath tub with water fountains and toys. She had a blast. In the big pool she fought to get out of my arms. Kaitlyn did great in the big pool this time just wearing her vest and swimming while I held onto Kyleigh-much different from last year. Kaitlyn begins swim lessons next Monday and I can only pray she responds well to the instructors and volunteers without having a total meltdown. One of her best little friends will be in the swim class with her so it should be fine. So glad it is summer!

Turn me Around

2010-06-01T18:48:00.000-07:00

Kyleigh has been hanging on to her slow weight gain and not getting close enough to 20 lbs. I have been a stickler with the 20 lb rule for turning her car seat around to face forward. Although many have told me it is 20 lb or 1 year I have always thought 1 year and 20lbs was safer. I was just so afraid that if I turn her seat too soon and then there was an accident that caused her injury I would blame myself because she didn't weigh enough to turn around. But recently, my very sweet girl that doesn't usually mind the car has started her toddler defiance of bucking when getting into her seat. Her legs were always folded up into her chest and she just looked so uncomfortable. Not sure where the long legs come from because it sure isn't from me :) Anyways, I gave in and turned her Britax Convertible seat around yesterday and she loves it. She is all smiles once again in the car. She claps along with music, plays with her toys and just smiles. I love it and she does too! Hopefully we can get her weighed this week and find that she is so close to 20 lbs that it doesn't matter. I never thought I would still have a 17 month old rear-facing in the car. She will always be my little petite, unless like her mom she hits puberty and gets the hips and butt from out of the clear blue sky.

Yellow Eye Causes Concern

2010-05-29T20:06:00.000-07:00

Kyleigh's Right Eye turns Yellow
Over 6 weeks post surgery from implanting a shunt on the right eye and the shunt has opened and the pressure is down from the 40's to a 2. Good news-right? Well, it is actually too low but no worries says Dr. Freedman as she adjusts her medication and takes her off glaucoma (pressure) drops and keeps her on a steroid but increases the frequency of steroid drops. This is an attempt to bring the pressure to a stable number between 10-14. In the meantime, Kyleigh's eye has starting changing from white (as the left eye) to mild yellow to now a dark yellow. This has caused anxiety not knowing if we should move up her recheck appointment from June 7th to immediately. Thank goodness Dennis' camera worked and was able to capture this picture and a few others. We were able to send them to the doctor and she replied the following:

"What you are seeing is the "going away" of the blood which had accumulated in the space under the transparents surface (conjunctival) tissue of the eye. I suspect there was a hemorrhage there from my antibiotic injection at the end of the surgery, and it can take a very long time to go away, turning all shades of green and yellow as the hemaglobin from the blood is metabolized. Is that conceivable? Did there used to be a bloody spot down there? If it is most yellow at the bottom, but looks otherwise okay (and not so small anymore?) then I am not overly concerned and feel we can wait at least until I return to town."

Phew! We breathe a deep sigh of relief knowing we aren't facing a emergency trip to Duke and that our biggest battle is feeding right now as she is asserting her toddlerness at the table and having sensory overload as her therapist called it today. Thank goodness the therapist was able to come see her today as I have reached my breaking point and was willing to do just bottles until she turned 16--not really but you get my point. Deanna was great and she made me feel less "stupid" and reassured me that it wasn't my fault. I love Kyleigh's therapists because they love her and they truly help her and me through this journey.

Update on Eyes

2010-05-24T17:50:00.000-07:00

Kyleigh had her follow up with Duke today. We found out that her eye pump has opened and now the pressure has dropped to a "2". Oops---too low! So we stopped all glaucoma drops for now and focus on steroid drops and creme. Right now everything about the eye looks good for now. She will return in 2 weeks for a recheck.

Ears, Eyes, and Grandparents

2010-05-23T16:23:00.000-07:00

Kyleigh has had a recent double ear infection and bronchitis. Other than fever and change in her eating/sleeping we would not have known to take her to the doctor. She was still pretty playful each day. Thursday my papaw was taken to Forsyth Medical Center for a heart catheter procedure and that evening I picked up Kyleigh to find she was burning with fever and terrible cough. After inhaler, nebulizer treatment and Motrin didn't work we decided a trip to the walk in clinic was in order. Friday I stayed home with her until she was back to happy girl and then our sitter watched her so I could go to the hospital and see my papaw. Turns out he had 3 bad arteries in his heart and two needed to be unblocked by the "roto rooter" procedure because open heart surgery was not an option. This surgery on Friday went very well. However, he took a turn for the worst neurologically. So they transferred him to Thomasville Hospital on Saturday night to be closer to his medical doctors. I spent the night with him and mamaw last night so that my mom could get some rest and in hopes that mamaw would too. At this point we don't know what is in store for papaw, only hoping for the best for him and mamaw.

Kyleigh goes to the eye doctor tomorrow morning to have her shunt rechecked and pressure checked. It would be great news to know that it was opening and her pressure was coming down. Then she will go to the pediatrician to have her ears rechecked.

Otherwise, the family is doing well and we are just hoping to get through the rest of this school year. We are all looking forward to summer and spending time at home.

And another thing...

2010-05-01T17:26:00.000-07:00

So many have asked, "How was the appointments on Wednesday at Duke?". I just wasn't ready to post the answer to that question until now. We took Kyleigh to the GI doctor in reference to increasing her dose of medicine for reflux and to the Cleft Palate Team for a follow-up. What we got instead was two extra appointments and a shocking discussion of surgery. So there you go...another thing for Kyleigh to fight. Basically, Dr. Ulshen feels that Kyleigh has battled reflux long enough. It is causing damage to her esophagus that was already weak. He could only up her medicine by 0.1 mL three times a day. He ordered blood work to make sure they aren't missing any important medical information. He also ordered a GI study to see how her stomach empties out food within an hour. We had that study done on Wednesday while we were already there at Duke. Kyleigh was a trooper. She lay on that table for a complete hour in a papoose strapped contraption while I sang every nursery rhyme and made up songs that didn't exist just to make her happy. We don't have the results of either test as of yet. Basically, Dr. Ulshen said it may be possible to add another med to her routine if these tests show that another medicine is helpful. Otherwise the next step is to surgery repair the esophagus and make it stronger. Huh? What?! Really?! The doc must have noticed my anxiety level skyrocket as he asked, "I'm sorry, but I thought we had discussed this before?". I told him yes in the distant past we had talked about this but I thought she would outgrow the reflux and that today we could just add more medicine to our routine. He mentioned that he understood my hesitation for her to undergo yet another surgery, especially one that comes with so many other risks. He then proceeded to explain how she would have to have a g-tube post surgery as well. What?!?!? A g-tube?!?! For the child we are working so hard to self feed.... oh no way! I begged him to up her dose to the maximum, set us up with feeding consultation and OT, and give us time to see if this would work. He agreed. We headed to get blood drawn and our next appointment with the Cleft Palate team.

The cleft palate team was the OT this time and she was not pleased with Kyleigh's lack of progress with feeding. She felt like along with reflux we are fighting sensory issues in her mouth that could be leading Kyleigh to avoid eating and gag/vomit as well. So she suggested we increase her OT services at school and at home and to at all costs avoid the surgery. She also told me not to worry about keeping her on a bottle because that is her main source of nutrition right now and we need to keep her eating/drinking formula until she progresses.

So, I rode home in the back with Kyleigh mulling over in my head, all that occurred on Wednesday. All I could do was ask God, "Why...?" and inwardly say this is just another thing that we must face. Thank goodness we have friends and family so we aren't facing this challenge alone.

So my friends, that is what happened on Wednesday. May Monday's visit to Duke Eye be less eventful and bring only good news.

Kyleigh's Weight Update

2010-04-26T17:35:00.000-07:00

Kyleigh was measured today by our nutritionist in the home. She only gained 6 ounces this past month. However, given she endured a surgery and has been battling severe reflux recently, at least she gained. She is now a whopping 18 lbs 8 oz. We go to Duke GI this Wednesday morning to address the reflux issue and then we will see the speech pathology team to evaluate her post op cleft palate development in regards to feeding and speech. I am hoping that both appointments will lead us to answers for how best to tackle the feeding time woes we have had recently.

Not much change...

2010-04-20T17:56:00.001-07:00

Dennis took Kyleigh to Duke for an eye check up. There isn't much to report on except her pressure is up and way UP, but the doc isn't too concerned as this yo-yo effect will continue until the drainage system they put in starts working when the stitches dissolve. They have changed her eye drop regimen and she returns to Gateway tomorrow. I spoke with her teacher and they have greatly missed the little munchkin. Ms. Carrie wishes she could just keep her full time but she is thankful that Kyleigh is well enough to go to school.

A week to remember...

2010-04-16T18:55:00.000-07:00

I should say a birthday to remember, as I turned 32 this past Tuesday and of course Kyleigh made it so very eventful for me. She was seated in her booster chair that is attached to the dining room chair. She was buckled in safely. I moved to go get her more food when she dropped her spoon and started crying and reaching for it. Before I could get to her she had toppled over, chair and all and bumped her head hard on our wood floors. Luckily, if that is even a word to use in this sentence, she fell on her left side of her head. The surgery was on the right eye so it was not injured but her left eye orbital area began to swell immediately and it appeared she was getting a black eye rather quickly. After an hour of phone calls to doctors we spoke with the surgeon, Dr. Freedman, and she suggested we come in on Wednesday to have her checked. Needless to say I was still too worried to go out for my birthday or celebrate in any fashion. Dennis was so sweet he brought home my favorite food (Japanese) and an icecream birthday cake just for me. So although there was a traumatic event on this birthday it ended with a smile.

The next day I took her to see Dr. Freedman's associate doctor, Alice Lin, because Dr. Freedman was out of town. Dr. Lin said that everything looked fine. Other than scrapes and bruising the fall had not caused any further damage---phew! So glad to hear that news. Now we go back this coming week on Tuesday for her 2nd pre-op appointment for the right eye. Until then we make sure she is wearing Kaitlyn's old pair of glasses as they were so helpful in protecting her during the latest gymnastic event (fall from the chair).

Kaitlyn had a great week at pre-K. She has learned to recite "Little Boy Blue" and she blows me away with new words daily such as "suddenly" and "magical". I love that kid.

I know I'm a little biased being her mommy and all but she is a good seed.

Dennis and I have had a long hard week of working at work and at home. We are so thankful it is the weekend and hoping to find some time to spend as a family.

ENT update

2010-04-12T17:48:00.000-07:00

Kyleigh had her post appointment with the ENT and Audiology team today since her cleft palate repair. And we welcome the good news it brought to our house hold of "all is well --- see you in 6 months"! Really???!!! Are you positive? Are you sure you looked at my kid? Those were the things running through my mind all at the same time "WOOHOO!!!". So her hearing is within normal limits and her tubes are in place and there is currently no infection. Amazing that she had such terrible ear infections for so long and now she is doing well.

Post Op Appointment was Good

2010-04-10T12:22:00.000-07:00

Kyleigh's pressure has already come down about 9-10 points since yesterday morning prior to surgery when it was 39. They are thankful for the small decline. They do not want it to be a huge decrease at a time as this may cause damage to the eye structure as well. She is somewhat fussy today at times but has been more playful than yesterday too. The doctor explained the "freckles" a little more in detail as "CHRPE" familial polyposis in the eye. She said that they shouldn't cause any eye related problems but she should be followed by a GI doctor. We have a eye drop regime to follow in addition to her normal medicine routine. We are thankful for naps and sleep and the small happy moments she has right now.

Home from Surgery

2010-04-09T13:57:00.000-07:00

Kyleigh did very well this morning during her surgery. Her pressure was checked before surgery began and it registered 39 which is very high! The surgeons began at 9:17am and she was in recovery at 12:12 pm. We were on the road headed home by 1:30. Dr. Freedman stated that Kyleigh did very well through the entire process and things went as expected. She noted that Kyleigh does have "freckles" on her retina which is not a problem but more of a sign down the road for her GI doctor to be watchful over. According to her they are harmless to the eye but are signs of polyps later in life. Weird?! But I'm glad she knows that little piece of information and shared it with us and her GI doctor. For the evening, Kyleigh has Tylenol for pain and discomfort and must wear her eye patch until the doctor removes it in the morning. We report back to Duke Eye at 8:30 for a post-op. I must say it is great to be home for once and not stuck in a hospital room listening to IV machine and pulse O2 machine beeping. Kyleigh is pretty fussy when awake and she wants the eye patch off. It is making life pretty hard right now. She is currently napping which is the only time I feel like she is safe from hurting her eye. Please pray that she has a restful night.

Eye Surgery in the Morning

2010-04-08T16:20:00.000-07:00

Kyleigh's surgery is scheduled at 7am. We will leave Greensboro by 5:15am to head to Duke Eye Center. We are not slotted to spend the night this time unless she warrants observation after surgery. Will update after surgery---until then keep us in your prayers.

Kyleigh's First tooth is....a

2010-03-31T19:22:00.000-07:00

MOLAR!!!! Seriously, I am not even kidding. That kid just cut her very first tooth and it is on the bottom right and it is a molar. Talk about a reason to be grouchy---ouch! Not sure why my girls never cut teeth in the right order. Kaitlyn cut her first tooth at 11 months old and it was a top tooth. Kyleigh is 15 1/2 months and just cut her first tooth and it isn't bottom front or top front but a crazy molar!!! My children just want to be famous for rewriting the baby books on teething :)

Surgery is Scheduled

2010-03-30T15:28:00.000-07:00

So the girls went for their check up at Duke Eye yesterday morning. We had high hopes that both would have a good check up. However, we also felt that the inevitable was looming about us. The exam began with Kyleigh and they told us her pressure was still very high. Then they examined Kaitlyn and found that her pressure was also very high. I've explained in the past that lower numbers is better. Unfortunately, both girls had readings above 25 yesterday. We like numbers that are 10-15. This meant that the intraocular pressure of the eye could be causing damage to the optic nerve which is the source of vision. Kaitlyn's optic nerve has a small cupping on it that has been there for the past 2 years. It hasn't changed despite the up and down pressure of her eye. So Kaitlyn was given a grace period and we were told to keep having her eyes checked in Greensboro between now and our next visit in July. They tested her vision and there isn't a change since last time. She definitely uses her right eye for the vision. When her right eye is covered she can not see and tests at 20/400. Her right eye tests corrected at 20/50.

Kyleigh's optic nerve however has changed. She has a larger cupping that is being created by the extreme pressure on her eye. In addition, Kyleigh has been having difficulty with her breathing lately. The one eye drop she takes can trigger breathing difficulty in a person that already has asthma. Although she needs this drop to reduce her pressure, she also needs to have better breathing. She will take this eye drop up until one week prior to surgery. In addition, her asthma doctor has ordered that she be placed on a nebulizer treatment twice a day. This aggressive treatment for the asthma should better prepare her for the unavoidable eye surgery.

Dr. Freedman explained that surgically placing a shunt on her eye was the last chance we have at reducing her pressure before permanent damage and blindness occurs. Her surgery is scheduled for April 9th. She will have Dr. Toth the retina specialist surgically remove all fluid from behind her eye first to make room for the shunt device since her eye is so small and the fluid can attach to the shunt if left in there. The retina specialist has to do this procedure to protect the retina from detaching. Then Dr. Freedman will insert the shunt on the back of the eye near the top. Then they will attach a donated sclera as like a band-aid to hold the shunt in place. They will also stitch the shunt closed at first. Her pressure will go down from simply removing the fluid at first. If the shunt starts working immediately then the pressure could go too low too fast and that is another problem. The stitches around the shunt will dissolve by 6 weeks and start working to reduce pressure in the eye. Hopefully, we can then also reduce the need for so many drops too. The goal---save the vision!

I must be honest when I say, I just want my beautiful baby girls to be able to see better and give them the best chances in life. It saddens my heart to know that they have both endured so many surgeries. However, it makes me proud to know that they are both troopers and they rebound so quickly from all obstacles put in their way.

On another note, the nebulizer arrived last night close to 10pm. We waited to give Kyleigh her first treatment this morning. Boy, oh boy, was that a disaster! She hated it! She squirmed, cried, scratched, pulled the mask, pulled the tubing loose, and just plain made it almost impossible. I was dreading her second treatment tonight. Thankfully, we switched scenaries and went to the rocking chair in her bedroom. Kaitlyn followed us and sang and danced to help entertain. Kyleigh lay still and calm the entire time for both treatments lasting almost a total of 40 minutes. AMAZING!!! There must have been people praying because it was completely opposite of what I faced with her this morning.

With a heavy heart but hopeful spirit...until next time.....go hug your children and thank God for them today!

Allergies, Asthma and All

2010-03-27T04:13:00.000-07:00

So Spring has sprung and brought with it allergies and asthma to our household. Kaitlyn has change of temperature related allergies and a terrible cough due to drainage. Kyleigh is wheezing and has a cough that mimics a old smoker of 50 years. She is currently using an inhaler and spacer to help with this but she isn't showing much improvements. She may be heading to using a nebulizer soon.

Monday we take both girls to Duke Eye for a checkup. Kaitlyn's is just a normal routine checkup and we hope it will bring good news. Kyleigh's is a recheck of her pressure and a visit with Dr. Toth the retina specialists. If Dr. Freedman or Dr. Toth have any concerns about the pressure of the right eye and the damage it may be causing then we are facing yet another surgery already scheduled for April 9th to input a shunt on the right eye that will drain the fluid.

This past week I met with Kyleigh's teachers and therapist for a goal team meeting. It was great. They had many positives to speak of her development and how she engages in the room. They suggested she start wearing actual walking tennis shoes. They tried an assistive walker with her but she is too short and moves backwards which is opposite of what they want her to do. So for now they will try push toys and holding her hands and letting her cruise by herself. She cruises along the play fence at school all of the time but we have yet to see her do it at home on the couch or other area besides her crib. So this weekend we are going shoe hunting for size 3 shoes for tiny feet :).

It is currently spring break so we will be finishing up workdays this week, taking the kids to the doctor, visiting friends and family. My niece will be in from Ohio so we are planning to spend time with her and my brother and sister-in-law in SC as well during the break.

Happy Spring --- allergies, asthma and all!

Growing...Growing...Growing

2010-03-17T17:37:00.000-07:00

The nutritionist came by yesterday to meet with us and measure Kyleigh. She is now weighing in at 18.2 lbs and measuring 75 cm long. This is a 1 lb gain and 3 cm growth since January 21st! So awesome considering she endured a major surgery and recovery, and was sick during the past 6 weeks. So very glad to know she surpassed it all. We were given the go ahead to start transitioning her to 1/2 Soy Milk and 1/2 Soy Formula. She can decrease her bottles from 5 a day to 3 and increase her solid intake. We were encouraged to try to fatten her with other foods which will be challenging given her allergy to all dairy products. We will also begin giving her corn kernel size bites of foods to help her learn to chew. She takes the Gerber puffs really well but she doesn't really chew yet, she more sucks and swallows.

She goes on Friday for her 15 month check up....wow...time is flying by!

First Week Was a Success

2010-03-13T14:57:00.000-08:00

Kyleigh and Mommy both had a first good week back to school. Kyleigh didn't cry even once when I transferred her to Ellen. Ellen said she did great going to her teacher Ms. Gina. The notes home and the phone calls made during the day indicated she was having a terrific time. She has really taken off with her scooting around. In her classroom, she has a gate that she pulls up on and cruises along. She is drinking from a honey bear with a straw and taking sips from a cup. Major progress is being made!

Mommy is adjusting to returning to working. The children have been good this week. The math lessons were fun and the days went quickly. By 3:30, mommy was ready to go pick up her sweet girl from Ms. Carrie. That is Kyleigh's afternoon sitter which I must say is wonderful as well.

We have been so blessed to have things work out for Kyleigh. Now, if only mommy could manage to get two Saturday's in one weekend she would be a happy woman!

The Big Day

2010-03-07T16:52:00.000-08:00

Tomorrow morning at 5am there will still be a small baby wanting to drink her morning bottle and have her diaper changed. There will still be a four year old getting dressed along side her daddy as she prepares to go to preK. But the difference is that mommy must get out of her pj's sooner, dress Kyleigh sooner, pack bags for Kyleigh and mommy and go to work. Yes, I said work. Tomorrow is the day I take Kyleigh to my friend Ellen for transporting her to Gateway Education Infant Toddler classroom in the morning and then I go back to teaching 5th grade math at Pearce Elementary. When Kyleigh's day ends at Gateway we have found a new friend, "Carrie" that is going to pick her up and babysit at her home until I get off of work. I wonder if I will watch the ticking of the clock all day. Of course, I will probably be so busy getting used to being back that I will probably forget to do many things, much less look at a clock. The strange thing is I'm ready to return to teaching but I'm so wishing that having my 15 month old hanging out in the room playing peek-a-boo and scooting across the floor could be a part of that day. But she is so cute that most students would spend their time wanting to entertain her and not learning math so the reality is she won't be going with me tomorrow---boohoo! I was told that it's always harder for the mom to separate from the child than for the child to separate from the mom and I agree it is true. She may cry for me for a few minutes when I leave the room but then she goes on to play. On the other hand, while teaching about graphs, data, problem solving and much more I am also wondering if she is happy, sad, sleeping, playing, missing me, and so on. But what I can count on is she will be so happy to see me tomorrow when I pick her up from Carrie's house and that is the most exhilerating feeling of all to know your child is happy to see you. So, three cheers for Kyleigh making a big leap to school and prayers for mommy adjusting to the entire thing.

Growing Up So Fast

2010-02-25T17:31:00.000-08:00

Seems like just moments have past since Kaitlyn was learning to walk and now she is 4 1/2 and in pre-K. I had a conference with her teacher today and she is doing very well in school. She loves school and takes in everything about the day. She has learned almost all of her alphabet, counts to 20, recognizes most numbers 1-10, writes her own name, understands syllables and deletions, jumps, gallops, and shows improved eye hand coordination. WOW...talk about surprised by the last one--we never expect positive feedback related to vision but so proud of our girl! She is definitely showing readiness for Kindergarten next year. She is so excited and talks daily about how she will turn 5 this summer and go to the big school with mommy next year. So cute!

Kyleigh too is making great strides in her growth and development. She is learning sign language. She claps when she is happy but she also uses this as a sign for "more". She can sign for eat and drink although it resembles putting her fingers in her mouth. She has many more sounds including "bye bye" thanks to the repetition of practice by mawmaw the other day in the car. Soon Kyleigh will attend the Infant Toddler Program at Gateway. We are so happy to have found people that are able and willing to help us transport her in the morning and afternoon. She is making a gradual entrance into the program. Her teacher is so very nice and loving. As hard as it will be to leave her soon as I return to work, I know she is going to be getting the ultimate therapeutic care and increase her development even more.

I am so blessed to have two very beautiful and bright children that learn at their own rate but so strong willed and determined to be great.

Where's the Sugar?

2010-02-22T17:11:00.000-08:00

So when life hands you lemons---make lemonade, right? But the saying forgets to tell you to add the sugar or else it has an awful taste unlike the yummy Kool Aid you remembered as a kid. What am I getting to? Just when we thought things were going smoothly and Kyleigh was doing better we get bad news at the eye doctor today. Her eye pressure in her right eye is high again. The pressure in her left eye was 10 -- -good! The pressure in the right eye was 35---BAD! So the first step is to add an eyedrop to the routine for a month and recheck her pressure. If the pressure isn't significantly lower we are faced with the decision of having surgery on her eye to reduce the pressure before long term damage occurs. She could redo the laser surgery like before but this could ultimately cause the eye to stop producing fluid altogether and isn't the preferred option. Or she could put in a shunt on the eye to reduce the fluid in the eye. A retina specialist would be in on this surgery as it requires the removal of the vitrous fluid behind the eye and can be dangerous to the retina when inserting a shunt. Even if her pressure is better by the end of March, Dr. Freedman was clear that we will down the road be faced with this surgery. So, back to my opening statement---I think I must have forgotten to add the sugar to my lemonade because just when I thought things were going our way we took a swallow and gag on the after taste---blah!

Bye-Bye No-No's

2010-02-17T10:27:00.000-08:00

Kyleigh had her post-op appointment today with Dr. Georgiade. He was pleased with her recovery and healing. She no longer has to wear the arm restraints (no-no's). She can also stop using the pigeon valve bottles and we can start working on using sippy cups. I never thought we would see the day where she could actually use a sippy cup! She is also recovering well from the bronchiolitis and is almost finished with the medicine. So glad to have had a happy visit to Duke today!

Sickness Plague

2010-02-12T16:54:00.000-08:00

Kyleigh continues to have the horrible cough and is now wheezing. Kaitlyn has a cough and puffy eyes. Kaitlyn was crying when I arrived at school today for her Caring and Sharing Party. Unfortunately, that meant we took another fieldtrip to the good ole' pediatrician. Turns out Kyleigh has bronchiolitis which sounded like a made up diagnosis to me at first but turns out to be infection of the bronchioles and similar to RSV. Kaitlyn has conjuctivitis (not pink eye) but just infection of the eyes and a bad cold. So they both left with prescriptions and we headed for the CVS.

Meanwhile, Dennis is at a PTA meeting fundraiser tonight for his school. They came up with a snazzy little jingle this year --

Putting Mr. Foster on the Roof- $300

Having Mr. Foster sleep on the roof- $1000

Seeing Mr. Foster freeze like a popsicle- PRICELESS

I have to give it to the PTA they are working hard to raise the money for students that can't afford to attend fieldtrips. Sadly, it happens to be one of the coldest nights in February and is currently snowing. I hope for his sake that they don't raise all of the money tonight and he can come home "safely" to a warm house and bed.

Either way, keep us in your prayers for health, safety and sanity.

Kyleigh Update on Fever

2010-02-08T17:29:00.001-08:00

Kyleigh ended up going to see our pediatrician this evening. She has lost almost a pound but that is expected with her recent surgery and illness. She had a fever of 101.7 after Tylenol. The doctor wasn't pleased with the lingering fever or cough. He questioned if she had pneumonia and wanted to verify with a chest x-ray. So off to Wesley Long we headed for an x-ray. She hated as they strapped her in the contraption with her arms above her head. We returned to the pediatrician office to await the results. Thank goodness, she does not have pneumonia. There is some respiratory gunk but they can't verify if viral or bacterial at this point without doing blood work. Since she had already begun the antibiotic the doctor has decided to continue the medicine. If her fever persists another 24 hours I should call and bring her back in for blood work. If it is viral she should take a turn for the better in the next 24 hours since it is 1/2 way through the length of an expected viral infection. All this said, she is still a sick little girl and we are no closer to a solution than we were hours ago.

Kyleigh's Fever Lingers

2010-02-07T17:15:00.000-08:00

So Kyleigh hasn't shown any improvements on the first antibiotic prescribed a week ago by the attending pediatrician at Moses Cone ER. So she went to our pediatrician's office this Saturday. Other than, "her throat looks really red and she should see her surgeon soon to make sure it isn't supposed to look this way", the doctor didn't say much. He did change her antibiotic to Augmentum and told us to keep doing Tylenol. Well, needless to say she has the worst cough and drainage. Of course, she didn't cough while at the doctor office-just like taking your car to the mechanic! Anyways, her fever just will not go away with Tylenol or Tylenol with Codeine. So I called the attending physician at Duke Hospital tonight and got clearance to give her Motrin. He said it sounds like they should check her for strept throat but we should call the surgeon's office in the morning to get his opinion. That's all for now-will keep you posted.

Recent Pics of the Girls

2010-02-04T08:01:00.000-08:00

Uncle Chris came to visit --- we love Uncle Chris, but we missed seeing Aunt Liz this time. Hoping to go visit them in SC this Spring. Kaitlyn showing off her violin skills.
Kaitlyn challenges Uncle Chris to a game of Hi Ho Cheerio--don't remember who won but I'm sure they both had fun! (Love ya Brother!)
Kaitlyn ventures out to the backyard to play in the crunchy snow and kept falling down.
Smiley girl playing despite the "no-no's" on her arms---such a trooper!

Update on Kyleigh

2010-02-02T16:35:00.000-08:00

Kyleigh has been making slow improvements as she recovers from surgery. She is needing the Tylenol with Codeine less and less. She is eating more solids and drinking more of her soy formula. On a good feed she is taking 3 ounces which is a miracle compared to day 1 post surgery. Her schedule is a mess right now, as she doesn't really have one. It is hard to have a schedule when she is eating small amounts at a time. Tomorrow is her first day back to the therapy sessions and it is OT so that should help her with the feedings. As many of you know we have had snow and it has resulted in "no school" for Kaitlyn. We are starting to get cabin fever and actually would prefer the winter weather to stay away as they are calling for more this weekend. Despite the cabin fever, we are still thankful that both girls are healthy and home.

Trip to the ER

2010-01-31T07:23:00.000-08:00

Yesterday Kyleigh went down for a nap around 10:30 and as of 2:30 was still asleep. I finally went in her room and started to try and arouse her a little. She didn't want to wake up. In addition, she was blazing hot to the touch. She had a fever of 102.9. I called the number on her discharge paperwork just to find out they were closed. So then I called the other number to talk to the resident on call and they didn't know who to have call me back. I waited and then called our pediatrician's office and had them do a conference call with us at Duke. So glad I did because the nurse at the ped office was able to get a doctor on the phone for me. He didn't like the fever either or that she was taking in so little of fluids. So he conferred with our surgeon and we were told to either go to the local ER or bring her to Duke ER. Since the weather was oh so not nice we decided to go with the local ER at Moses Cone. Kaitlyn went to stay at our neighbor Anna's house while Duane drove us to Moses Cone in his 4WD vehicle. A urine test, x-ray, physical check-up, hours and a $200 co-pay later we are leaving with a Rx for an antibiotic and told to just keep giving her Tylenol with Codeine. Basically, they don't know why she has the fever but they think they should treat her for a possible infection. We returned home by 9pm and her fever was creeping back up. We gave her more Tylenol with Codeine and some jello and put her to bed. This morning she is acting better and playful with a low grade fever. Kaitlyn is also feeling much better.

Day 1 Post Surgery---We are Home!

2010-01-29T16:40:00.000-08:00

We came home today at 12:30 - what a blessing!!!! Kyleigh did a great job eating banana and drinking 2 oz this morning for the therapist so we were discharged. On the way home she ate more mashed banana and then took a long nap. Once home she changed clothes due to the drooling that occurs right now. She played happily for a while with mommy and her toys on the floor until it was time for another great nap. She rested well as long as mommy or pawpaw or mawmaw would hold her on their chest, which none of us really minded at all. My parents went to the store for me which was another blessing.

We have been receiving many blessings this week despite the circumstances. We realize that we are surrounded by so much love and friends. We were greeted at the hospital by our children's director, Kathy, yesterday with lunch from Quizno's which we enjoyed later in the day. Then we had several friends from visit us at the hospital by the end of the day as well as phone calls, emails, and texts all through the night letting us know that we were in their thoughts and prayers. Even tonight as we returned home from the hospital there were friends eager to provide dinner that we almost ended up with 3 meals---so awesome to be so loved!

We appreciate all of the support that we have been given and know that we will be glad to return the blessings to all of our friends and family one day.

Kyleigh and Kaitlyn are sleeping soundly in bed and the snow is coming down outside our home. So thankful for the small steps in healing and the peace I feel tonight.

We Survived the Night

2010-01-29T06:19:00.000-08:00

It was a long night of tears and no sleep but we survived it. Kyleigh was not interested in feeding from the cup or syringe. But this morning her feeding therapist (speech) came in and we tried her bottle with the pigeon nipple and mashed banana with a spoon. She did GREAT!!!!! She was so happy and now it looks like we might go home today. We are waiting for the doctor to come in and talk to us about it. Wish us luck!

Recovery Update - 1st Night

2010-01-28T20:34:00.000-08:00

It is 11:30 pm and I just finished rocking Kyleigh to sleep as we both shared a good cry fest together. She is just pitiful. They gave her some pain medicine again. Her first IV was blocked and bleeding out so they had to remove it around 9pm and just came in at 11pm to redo the IV with an IV team. She screamed and I cried. It was a sight I am sure. I was able to pick her up once they finished and give her hugs and kisses. She took 2mL of formula before laying her head on my shoulder and falling asleep. I wish I could say they will leave her alone for the night but I am sure they will come in and take her vitals again. Her temperature has returned to a beautiful 98.7 and her oxygen sats are high 90's. I will keep you posted as things continue to change.

Surgery Went Well

2010-01-28T15:46:00.000-08:00

Kyleigh came through surgery very well. She was only in there about 2 hours. She also passed her hearing test perfectly. We were so pleased. She is staying overnight in room 5701 and depending on if she can get off of the IV she can go home tomorrow. However, she has an elevated temp of 99.8 currently so they are watching to make sure it does not develop into a fever and complicate things.

Kaitlyn is doing very well and has been fever free all day. We are so happy with that as well.

Thank you everyone for your prayers and support. Keep praying. Kyleigh is in pain and feeding is very challenging at the moment. We will keep you posted.

Surgery is A Go

2010-01-27T16:37:00.000-08:00

We will report to Duke Children's Hospital 3rd floor at 9am tomorrow morning. She will be in the holding area until approximately 10:30am. Once surgery begins it could take anywhere from 1 1/2 to 3 hours. She is having a cleft palate repair and auditory brainstem response (hearing) test. The cleft palate repair can last 1 1/2 to 2 1/2 and the hearing test can last 45 minutes to 1 hour. The hearing test is done while she is under anesthesia to check her nerve endings for damage and determine if she has suffered any hearing loss due to the recurrent ear infections from the cleft palate. Once she is in recovery we will be allowed to go back to her and the speech team (feeding consult) will come and help us with her first feeding before being discharged to stay in a room overnight in the main hospital. She will also have "no-no's" on her arms immediately in the recovery room and they may not be removed until her post-op appointment. They are velcro arm bands that stretch from her shoulder to her wrist to prevent her from bending her elbows and reaching her fingers in to the stitched area.

On another note, Kaitlyn has spiked a fever of 103 tonight. Dennis and my parents have taken her to an urgent care doctor in Thomasville. She was already planning to spend the night with my parents. They have been instructed to wake her up every hour to check her responses. If her responses slow, fever increases, or she worsens in any way they are to take her to the hospital. Please join us in praying that she will recover from this strange fever. They have given her an antibiotic but they have no idea what has caused the fever. My dad is staying with her tomorrow. It is hard because all of us want to be with Kyleigh and Kaitlyn at the same time but we can't do it. Dennis, my mom and I will go to the hospital with Kyleigh and once Kyleigh is stable Dennis and mom will go back and help with Kaitlyn.

All in all, I hope we can all get a good night's rest tonight and that Kaitlyn will be better by morning without having to go to the hospital. I also hope we can get Kyleigh through this hurdle she faces tomorrow.

Kyleigh's Surgery Approaches

2010-01-26T04:30:00.000-08:00

Kyleigh is scheduled for cleft palate surgery on Thursday of this week. We go tomorrow, Wednesday, to meet with the surgeon and complete her pre-op appointment. I will know more about what time her surgery will occur and other details after that appointment. Until then we are just hoping and praying she isn't getting sick again since she has an elevated temperature this morning, yucky nose, and really fussy. I am not sure if they will proceed with surgery if she is sick. We really want to move forward with this surgery so that she can get past feeding problems and ear infections related to the cleft. We will keep everyone posted.

Kyleigh's Pre-Crawling moves

2010-01-08T11:31:00.000-08:00

Today Kyleigh was playing with her Fisher Price Learning Farm and dropped the carrot top. She reached forward and moved to a hands-side lying position. Then the carrot scooted away so she went belly flop and reached for it again. Before I knew it she had pulled herself away and scooted off the mat after the carrot. She was doing little scoots across the floor after toys. It was awesome! I tried to catch her on video but she wasn't showing off once the camera started rolling. Here is a small glimpse into what it looked like in pictures. Afterwards she took a bottle and a nap because after all it is hard work learning to do new things. So happy for my little girl! Making progress one day at a time!

Update for the New Year 2010

2010-01-06T10:16:00.000-08:00

We celebrated Christmas with our 3rd annual Foster breakfast/brunch. The grandparents came and we enjoyed each other's company. Kaitlyn opened all the presents including most of Kyleigh's. We captured her on camera waking this morning and coming out to find that "Santa" had come. It was perfect. She was so excited that he brought her the violin she had asked for even if it was purple. My grandma Maynard came for breakfast too as grandpa was in the hospital and we didn't want her alone on Christmas morning. It was such a treat to have her at our home. Grandpa came home from the hospital by the evening. We finished up Christmas at my mamaw's for dinner. Papaw was not feeling well and was in bed, we feared that he had suffered another stroke.

New's Year Day came during our sleep as we are just too old to stay up to midnight these days. I am personally glad to have 2009 in the past and looking forward to what 2010 may bring us. I pray for a break in medical expenses and developmental gains for the girls and lots of laughter in our house. Soon we will face the first hospitalization of the year with Kyleigh's surgery on Jan 28th. Until then we play each day and work towards small goals.

In fact, today, she had some puffs on her high chair tray and she captured one in her small hand. She manipulated it to her little pincher fingers and took it to her mouth. Yes indeed, my sweet angel fed herself a puff for the first time today!!!! Wooohooo! and shouts of Hallelujah!! rang from my lips as I clapped and jumped for joy. I then called my mom and texted people including her OT. I was so proud. Of course, she refused to do it again but just smiled at me with her goofy grin and opened wide like a little bird waiting for me to give her another. Gotta love her. But it is a start and it shows progress and I need these signs of progress to keep me motivated. This SAHM (stay at home mom) stuff is difficult in more ways than one. I need these moments of success to remind me why I am home right now with her and that it is the most important job I will ever have in my lifetime.

With that said, Happy New Year a few days late, may 2010 bring us all more happiness and good news to share with the world!

Happy 1st Birthday Kyleigh Grace!

2009-12-24T19:02:00.000-08:00

Kyleigh turned 1 year old on Saturday, December 19th. At her one year check up she weighed in at 15 lbs and 6 oz, 70 cm long which is 3 times her birth weight and an increase of almost 17 inches----WOW!!! In her one year of life she has had 3 eye surgeries, 2 ear surgeries, 3 visits to the ER, weekly therapy since 6 weeks of age, and multiple doctors' appointments with various specialists almost weekly. It has been a busy year. So to celebrate the fact we all survived this year and her growth so far we had planned a party for Saturday at 3pm.

However, as most of you recall it snowed the night before and delayed her birthday party from occurring on time. It didn't stop my friend Kristy Titcomb Miller from hopping on an airplane and flying down to surprise me for the party. So Saturday we celebrated in our living room and the party was moved to Sunday. Unfortunately, the change of schedule didn't fit into everyone's calendar and only a select few were able to attend. It was quite a disappointment not to have all of our friends and family join in the celebration of this past year but you can't change the weather. Due to Kyleigh's milk allergy she couldn't partake of the typical "smash" birthday cake and due to her cleft palate and feeding problems she couldn't really eat the cake either. However, I was able to purchase a vegan (dairy free) muffin at Earthfare and used Soy Whip topping as the "frosting". She loved the topping as she licked it off my finger. I learned from Saturday's celebration that she couldn't tolerate the muffin as she threw it back up. So on Sunday I didn't even chance it. Her birthday cake was a photo of her one year pic with the teddy bear. She was a genuinely happy baby on her birthday.

We thank all of our friends and family that have joined us in prayer over her life since even before her birth. We are so excited that we will spend this Christmas at home as one "whole" family considering last year she was in the NICU over Christmas. We ask that you continue to pray with us over her upcoming surgery to repair the cleft palate on January 28th.

Come back to view pics later as I am having difficulty with uploading pics right now--sorry.

Beautiful Baby

2009-12-09T14:01:00.000-08:00

Here is a sneak preview of Kyleigh's 1 year old photo session----

New glasses and Itchy Skin

2009-12-04T17:27:00.001-08:00

So Kaitlyn went to Dr. Young on Thursday and he fit her for a new pair of glasses. Her prescription hasn't changed much but her frames were definitely too small for her face and she needed a new pair. While we were ordering the new pair the lens popped out of her current frame and they had to glue and bolt it back together. Needless to say we ordered a new pair just in time. I hope that insurance will reimburse us though because they were not in the budget and yet she had to have them. Dr. Young also said he wanted to see her back again in 4 months. If her prescription changes for the worse by then she will have to start patching her good eye and wearing the contact lens again. Please join us in prayer that this will not occur. She can't stand wearing the patch over her good eye because she says, "I can't see", "It's too dark". Plus the contact lens sometimes irritates her eye the same way contacts irritate my eyes. We just don't want to have to go through this again.

Kyleigh went to the allergy doctor today and she had skin testing for milk, egg, soy, and dust mites. She was positive for milk and negative for others. They won't test nuts, berries, fish and other foods until she is 2. This means she can have Soy based formula and switch to Soy milk at her 1st birthday but no milk or milk based products. She gave me a list of the milk based items. It is a list of about 30 items that are milk related and must be avoided including butter, margerine, certain oils, and lots of others I can't pronounce and others that are obvious such as cheese. This just means we have to check and recheck labels of premade foods. We have to ask questions of prepared food that we personally didn't cook before she eats as she increases her ability to eat more than just purees. It also means I have a freezer full of food with butter that she can't eat because our nutritionist had me add butter for calories but that is a milk item. So frustrating! Good thing is she can outgrow this allergy by age 5.

Her first birthday is right around the corner. We are planning a small gathering at our house on her birthday for cake and ice cream, both of which she can't eat. However, I am bound and determined to get a cupcake or something that is milk/dairy free for Kyleigh to attempt to eat. She still struggles tolerating eating Stage 2 solids and puffs so this may be a disaster but I can't see celebrating her birthday without a cake she can eat. Several friends and family have suggested a few ideas that I'm looking into. I hope to have a simple solution by the 19th .

Kyleigh Update on Feeding Issues

2009-12-02T15:42:00.000-08:00

Today we took Kyleigh (my parents were the chauffers) to Duke for a feeding consultation. During the feed with the therapist Kyleigh was definitely having labored breathing and it was coming out of her nose. If you have never witnessed sweet potatoes come out of a baby's nose then you are blessed because it is so pitiful to watch her gasp for air and cry because it hurts. The therapists stopped the feed, went to talk to a doctor, and got orders for a swallow test so they could see what was going on. She had to first drink a thin mixture of barium, then tried to drink a thick mixture but couldn't get it out of the bottle because she can't get suction, then she ate sweet potatoes mixed with barium and puffs dipped in barium. Her facial expressions were hilarious as she ate and ate. You could tell it was disgusting but she kept opening up like a baby bird eating the best worm. You would've thought it tasted like cotton candy but anyone that has ever drank barium knows it taste horrid. What we found out is that she is protecting her airway while eating so she isn't in serious danger. However, she has a slow response swallow. She gathers food or drink before swallowing and then when she swallows some goes down and some goes up the sinus/nose cavity. When the consistency is thick then it just sits and builds rather than slowly running back down her throat. That is why she experienced a "non-breathing" episode while eating last week and why she experienced labored breathing today. The only thing we can do is try to encourage her to take many swallows with each spoonful and take breaks after several drinks. This will only resolve when the cleft palate is repaired. Until then...sweet potatoes out the nose will be a daily happening for sweet Kyleigh. Come on January 28th!!!!

Kaitlyn's Cute Antics

2009-11-29T17:51:00.001-08:00

Kaitlyn ran an errand with me this evening and she couldn't wait to take her baby doll with her. This baby doll just happens to be one that we had packed away up in the attic because she never played with her when we gave it to her 2 years ago. Tonight she took the bottle and her play phone that we found in the attic with us to the store. She was feeding the baby in the car while talking on the cellphone to various people. She was sighing and explaining to the person on the other end of this pretend conversation that she would "have to call you back because the baby is crying and she is trying to get her to go to sleep". Then she said, "well, I will call you when I get back from the store, okay". Next thing I knew she was shushing her baby doll and telling her not to cry and to go to sleep. Then she said, "ugh..hold on...phone is ringing mommy...I got to take this call okay". She answered and told them "I'll call you back when I get back from the store, okay". Then she said, "Oh no. I got to call my Nana and Mawmaw and tell them something about the baby". I giggled because I knew she was mimicking me the entire time. Then, the ultimate funny phrase came out of her mouth as she pretended to have a conversation with her Nana ---- "Hi, ummm, Nana...yes...did you go over the river and thru the woods to get there?". I busted out laughing as I drove the van. Of course, she didn't like that I was laughing and she didn't know why so I had to explain to her that I was laughing at something else. She then proceeded to call her mawmaw and ask for directions to the beach because based on her conversation that is where mawmaw and pawpaw are right now and she wanted to take the baby to see them. HILARIOUS!!!!

Happy Thanksgiving 2009

2009-11-26T16:22:00.000-08:00

We went to my parents house this year for Thanksgiving. It was just us 4 and my parents but it was a nice meal and the girls enjoyed their quality time with mawmaw and pawpaw. Here are some pics from the day-

Kyleigh is downing a bottle after waking from a long, much needed nap today.

Kaitlyn convinces pawpaw to play baby with him. He is feeding the baby and taking specific directions from Kaitlyn as to how it is done.
Kyleigh is enjoying playing on the floor at mawmaw and pawpaw's house with her whoozit.
Kyleigh laughing at her silly daddy---too bad this picture doesn't have sound bytes because she has the cutest laugh.
Daddy and his little girl on her first Thanksgiving. She even got to eat sweet potatoes today.
Hope everyone enjoyed a wonderful Thanksgiving meal with family and/or friends this year.

Eye Update for Both Girls

2009-11-24T17:23:00.000-08:00

So today was a long and eventful day for our girls. My mom picked up Kaitlyn from school at 10:30 so she could come home and eat lunch before we hit the road for Duke. Both girls had an appointment at the Eye clinic today at 1:15. Kyleigh played the whole way there and Kaitlyn took a much needed nap. While there both girls did an amazing job of cooperating with the doctor. She was able to get a very accurate check of their eye pressures. Both girls have pressures in the low 20's which is high comparatively but stable for them. She also looked at their optic nerve and said they look very healthy indeed. Kyleigh's corneas were crystal clear which is another indication that pressure is good. Although Kaitlyn has had a "wobbly" left eye recently it is nothing related to the pressure which is great news. It is most likely the weak muscle and her overuse of the right eye in comparison to her left. It is definitely time for new glasses for Kaitlyn so we will visit Dr. Young in Greensboro next week to get her fitted for new specks. Kyleigh's vision is improving as well. She is becoming less far sighted and her prescription is getting better but we didn't need to change her glasses just yet. She needs to get more accustomed to wearing them constantly first. They tested Kyleigh's vision today using chart boards that had a grey background and squares with black/white stripes. Each board they showed her the square got smaller and the stripes got closer together in proximity and the black/white got lighter. It was amazing to watch her look and find the contrasting blocks. She did great. It was obvious when we reached the board where she could no longer detect the presence of a different shade. Dr. Freedman was impressed that based on this evaluation today she is finally on the chart for visual acuity. She is not on the normal curve yet but to be on the chart is better than being off the chart. YIPPEEE---go Kyleigh!!!

We are also in the process of breaking Kyleigh's attachment to her pacifier. As most of you know she cannot have it post surgery of the cleft palate and now that is literally just around the corner. She still needs it a large portion of the day. Today she had it in the car and at the doctor appointment. But she did well playing in between those times and not having it attached to her clothing again until bed time tonight. So we shall see how long this process takes. Pray for her and us as we enter this battlefield!

11 months ago---and counting

2009-11-19T16:49:00.000-08:00

Here is a pic of our 11 month old girl today --
Kyleigh turned 11 months old today. That means in one month she will be a year. YIKES!!! Where did the time go? It is so hard to imagine her as a one year old since she is behind developmentally. She is such a happy baby most days though so I can't complain about that. We have a surgery date for her cleft palate repair scheduled for January 28th. This gives her time to get through the holidays (first birthday, Christmas, and all of the gatherings in between). Plus it gives her time to possibly gain another pound or two before then. She is currently 14 lbs 2 oz and 70.8 cm long. She is a growing. She has recently increased her time sitting up to 10 minutes without support and she rolled over from belly to back again today. The rolling was a skill she had down pat but she stopped and I was so relieved to see her do it again today with some prompting of course; nonetheless, she rolled. I am excited to have the surgery scheduled now so we can prepare better for the date. It gives us time after surgery to help her recuperate before I am scheduled to return to work. However, I have the biggest butterflies in my stomach right now thinking about it and anticipating what to expect as the outcome. Will she do well? Will she recover quickly? Will there be a lot of pain? Will she regress in her developmental milestones we are finally achieving? Will she bounce back just as quickly and take off to become the overachieving little girl we dreamed of? So many questions and too many to type here.

What I do know is that the unknown is terrifying but I am learning to keep my faith in God to take care of her. I am being constantly reminded through the sermon series at our church this month that we must not have unrealistic expectations of life and perspective is everything. God is giving me such a wonderful opportunity to capitalize on my time home with Kyleigh and he is working on her physical development daily. But he is also working on me- making me a better mom, wife, and overall person. I have had a song stuck in my head playing over and over again for the past month by Sandy Patti called "Masterpiece". It speaks to all I truly believe that both of my girls are and will become. If you have never listened to it before I urge you to google the lyrics or find it on iTunes and listen. It is beautiful! It will make you cry or bring mist to your eyes so be prepared. Here is a look into the lyrics -

Before you had a name or opened up your eyes
Or any one could recognize your face
You were being formed so delicate inside
Secluded in God’s safe and hidden place

With your little tiny hands and little tiny feet
And little eyes that shimmer like a pearl
He breathed in you a song and to make it all complete
He brought the masterpiece into the world

[Chorus]
You are a Masterpiece a new creation he has formed
And you’re as soft and fresh as a snowy winter morn
And I’m so glad that God has given you to me
Little lamb of God, you are a Masterpiece.

And now you’re growing up, your life’s a miracle
Every time I look at you I stand in awe
Because I see in you a reflection of me
And you’ll always be my little lamb from God

And as your life goes on each day, how I pray that you will see
Just how much your life has meant to me
And I’m so proud of you, what else is there to say
Just be the masterpiece He created you to be.

Chorus-repeat

So as you can see I am just believing that God has given me to beautiful girls to raise and both of them are truly a "Masterpiece". They have their flaws but they are growing up and changing daily. I thank God every day that Kyleigh only has the cleft palate and not the lip. It seems silly but I think God knew that I just needed that one little piece of perfection in that both my girls have "lipstick" lips at birth. Okay, so maybe that is a bit vain but I still thank him daily that we aren't dealing with multiple surgeries due to a cleft palate and cleft lip. We pray that all we have to do is one surgery on the palate. We know he is touching her eyes and ears. We know he has given Kaitlyn the ability to use her better eye and she is moving forward with leaps and bounds. Sometimes I just wish I could see what was coming around the corner so I could be prepared with excitement in my voice or a tissue in my hand but all I know right now is to hold tight to friends, family and faith. Thanks for listening.

Kaitlyn and Kyleigh's Update

2009-11-18T11:44:00.000-08:00

Kaitlyn earns the Terrific Kid Award for 1st Quarter at Shadybrook - she is acting shy on stage---she can be so "goofy" - November 13th Hi Mommy---I'm sitting up all by myself and if I must say so myself I'm in an adorable outfit
"Hello?"
Yum...Yum...mommy's chin is a nice chew toy (Thank goodness no teeth yet)
Kaitlyn has learned to write her name all by herself--we are so proud of our big girl!

Unseen and Unexpected Blessings

2009-11-17T18:42:00.001-08:00

So Dennis and I took a total leap of faith when I signed up for a 6 month leave of absence to take care of Kyleigh. It has not been easy on us financially, emotionally, or mentally. I knew in my heart that it was the right thing and God would provide for our family over and over again if we would just trust him. Well, it started a month or so back when we received a love offering and pantry gift from my parents' church. Then last week, we received a refund check in the mail from FACPS that was totally unexpected. Tonight our small group presented me with a card. In this card were words of love and prayers and money for our struggles. WOW! They said, God told them to do this and they wanted to bless us. WOW!!! So lately I have felt alone in this struggle. I have spoken with friends and they always lend an ear, shoulder, hand me a tissue, or whatever is needed at the time. I just never saw this coming. I thought God was going to provide through us sacrificing more and more when instead he is providing unexpected blessings along side the sacrifices. Again---WOW!

Kyleigh Update and today's adventures

2009-11-02T18:00:00.000-08:00

4:oo am Kaitlyn woke up sick in bed again.... :(

4:30 am Kaitlyn woke up sick in bed again.... :( bad tummy

5:00am Kyleigh woke up hungry and crying from double ear infection pain

6:30 am Crystal, Kyleigh and mawmaw leave for appt to Duke but Crystal hits mawmaw's car with her van in the driveway ---- OH NO!!!

7:00 am Leaving for Duke --damaged van and all

8:30 Kyleigh's appointment with Dr. Campbell cardiologist

EKG---she was a true champ and lay perfectly still for this procedure

Blood Pressure--- not such a happy camper..couldn't get a true reading

Temperature---fine

Weight -- 6.385kg (equals about 14 lbs)

Height-- 70.8 cm long

Echocardiogram---she was another champ...babbling, smiling, very little fussing, tried to help the tech scan her heart and also tried to eat the cords :)

Results----good heart :) Still has a hole in the upper chambers, called an ASD, but it is very small which is why doctors can't hear it using their stethoscopes but it is there and doesn't seem to be the cause for poor growth

12:00 ENT appointment (running late)

Confirmed double ear infection

Discussed having to use Ciprodex ear drops for next 2 weeks and possibly keep her on the drops long term (on and off) until cleft palate repair

1:40 Heading home but decided to drive around the parking deck like a merry go round looking for the exit, almost got hit by a mean driver backing up out of the exit lane

3:00 Arrive home with a happy baby and call insurance to file claim on vehicles

It's been a long day but so glad to have gotten good news that the whole in her heart isn't getting larger.

We are cleared by 2 out of 4 doctors for cleft palate surgery. Woohoo!!!

Happy Halloween!

2009-11-01T17:40:00.000-08:00

I'm a Cheerleader----

Kaitlyn enjoyed dressing as a cheerleader. She did a great job of saying an old cheer of mine from high school (no I was never a cheerleader but it was popular at all the football games)--

Go Bananas! Go Go Bananas!

Lean to your Left

Lean to your Right

Peel your banana and

Ummm

Take a bite!!!

Our little Jack o' Lantern - such a happy girl despite ear infections

She dressed up just for pictures then it was bottle and off to bed for this sick and sleepy girl.

Happy Family....(awww...Dennis and Crystal have matching shirts)
My Girls....so sweet

We Have Been Blessed....

2009-10-27T12:21:00.000-07:00

Wow....If a blessing from a church that you don't even attend doesn't give us an attitude check up I don't know what would do it for us. Just 2 weeks ago we decided it was in the best interest of Kyleigh's health and well-being and in agreement with her doctors' that I go on medical leave for six months to care for Kyleigh at home. The goal is to get her back on track developmentally and physically so that she can have the cleft palate repair surgery. My being home is allowing me to focus on her therapies, doctor appointments and taking care of things that normally were pushed to the side because I was working full-time. Since I have been home Kyleigh has learned to sit up for longer periods of time and is tolerating standing on her feet while holding on to your hands. However, she hasn't been much for doing anything since Friday because she has been so sick with the flu. Kaitlyn is finally getting over her flu but she still has a terrible cough that sounds like she is very sick. She has been fever free now for over 2 1/2 days so we plan to send her to pre-K tomorrow as she is missing her teacher and friends badly (mommy longs for her to go back so she doesn't have to pretend play preK anymore and get told I am doing it wrong by a 4 year old).

My mom came by the house today with a present from her church. They had sent us a check to use to help with expenses for Kyleigh. I was able to cash the check today and go straight to the pharmacy to purchase much needed prescriptions for her and cough medicine for Kaitlyn. Thank you!!! They also sent an overabundance of non-perishable goods to our pantry. We have a pantry stocked full of canned goods, some items for Kaitlyn such as cereal, poptarts, cookies :), and even some eggs and bread. As I was putting away the groceries in our outdoor pantry and inside pantry I was overcome with emotions. How is it possible that we are so blessed by people in a church that only know us from stories told by my parents? Why is the God I cursed and was angry at so willing to send food and supplies to my family?

I guess what I know is that sometimes I get bogged down with the trials of life we are facing each day that I forget that I am promised to have a future and that it takes faith to withstand trials. It is definitely a leap of faith for me to be out of work and unpaid for 6 months but I have only been rewarded so far for this decision. Rewarded by the parents of my classroom applauding me and wishing me well, rewarded by the time spent with Kyleigh and seeing her sit up on her own for several minutes just last week, rewarded by having time to do preK work with Kaitlyn, rewarded that I can spend time with my family and now a pantry full of food. Wow....so on this rainy day where stress has not disappeared from our home I can still stand up and say, "I'm okay. It's a good day. I am so blessed."

H1N1 ---- Go Away Germs!

2009-10-23T17:38:00.000-07:00

As my mom would say "Go Away Germs" (taken from the Bill Cosby show when Rudy was sick--good episode), we need the germs to go away from us. Kaitlyn has been sick since Tuesday with fever, cough, vomiting, diarrhea, and runny nose. It has progressively gotten worse and her fever returns after the Motrin wears off. Having both Kyleigh and Kaitlyn home together was difficult. Kaitlyn was made to wear a mask and stay in her room away from the family common areas and Kyleigh. She only came out to go to the restroom. Thursday afternoon, I had reached a level of exhaustion with caring for a fussy Kyleigh and a sick Kaitlyn that I called for reinforcements. My mom gladly came and took Kyleigh to her house where she was happy and playful. This allowed Kaitlyn to come out of her room and enjoy some time playing Candy Land and pretend play with mommy while she wore a mask still.

Today mom called and said that Kyleigh had gone from happy go lucky to running a fever. So I made the call to the pediatrician office explaining that Kaitlyn was not improving and Kyleigh was now running a fever. The appointment was at 5pm so Dennis arranged to get Kyleigh from my parents and Kaitlyn and I met them at the office. Dr. O'Kelley says that Kaitlyn is still fighting the H1N1 flu and that now Kyleigh is exhibiting the same symptoms. Now the state won't pay for testing to confirm but it is clear her signs and symptoms are following the same path. Therefore, he prescribed her Tamiflu but said it was too late for Kaitlyn to begin the Tamiflu and based on her symptoms and age it didn't seem applicable for her to have taken the Tamiflu on Tuesday. He said that the cases of H1N1 that he has seen have not been anywhere near as scary as the reports we have seen on television. I sure hope he is right. He says that Kaitlyn has about 3 or so more days of symptoms before she starts to make a turn around and that the Tamiflu would help reduce the time frame of Kyleigh's illness.

If either starts running a higher fever or showing signs of a secondary illness we have to go back to the office.

Needless to say we are looking forward to having sickness out of our household.

It is rough to be sick and 4 years old

2009-10-21T18:50:00.000-07:00

Kaitlyn has the flu and bless her heart it has been rough on her this time. All she wants is to cuddle and snuggle her mommy because she feels so yucky and yet she is forced into quarantine in her room. If she comes out of the room she must have a mask on. She is pitiful when her fever is high and she is coughing. Of course once the cough suppressant and Motrin kicks in she is wanting to be active and driving me nuts because I won't let her out of the room. Being sick at 4 years old is like cruel and unusual punishment for all involved. I sure hope she gets over this soon and that no one else in the house gets it.

The 90/10 Principle

2009-10-20T17:09:00.000-07:00

At the beginning of this school year we saw a very inspirational powerpoint at school that centered around the "90/10 Principle". At the time I was very inspired and thought, this is true. Now however, I think it is bologna because my life feels more like the 10/90 Principle or worse. So pardon me for a moment today as I use this blog as a means of releasing some bent up anger issues about life.

The 90/10 Principle states that 10% of life is made up of what happens to you in life and the other 90% is how you react to what happens. In other words, 10% of life is out of your control and your reaction to those events can make you have a bad day or not.

You can google the "90/10 Principle" and watch the inspiring slideshow yourself and it just might change your life but for this moment it just makes me more angry.

Well...okay so maybe if my bad day was spilling coffee on my shirt, or paint on the wall from a preschooler doing art, or formula on the floor but my bad days are built up of much more than that it seems.

Here is my 10% -

1. Beautiful baby girl born 4 years ago with vision problems and stayed sick her first two years of life

2. Beautiful baby girl born last December with vision problems 3- cleft palate 4- ASD and 5- many other health problems and can't seem to catch a break and get better

6. The state dropped our option for good health care so now I pay $60 every time my children see a specialists which in the case of Kyleigh is at minimum once a week.

7. According to the state department I have used up my FMLA for the calendar year and my current leave of absence isn't covered under FMLA which puts my insurance coverage on me and job protection at a minimum

8. Kyleigh keeps getting ear infections and her ear is still bleeding- no sign of things getting better

9. Kaitlyn has an unconfirmed case of the flu (H1N1) because doctor's office won't test it anymore but she has all of the symptoms

10. Bought a van that the sales person wrecked moments after I signed the paperwork and now they won't make good on the mistake by fixing the van

11. Feel as if I'm all alone in this universe with no one to talk to that can understand the struggles of being the mother of children with disabilities

12. Disconnected from my husband because we are both so busy- he has work and I have the kids

13- Is there really a point of continuing this list of complaints?

You get the point. I think that I'm close to giving up on searching for the light at the end of this gloomy tunnel. The good happy pills that the doctor prescribed only help short term. Drinking alcohol sounds like fun but isn't a cure either. So, according to the 90/10 principle I should look at all of my situations as the glass is half full and be positive. Well, that is bologna!

I dare any one of you to walk in my shoes for a day and react happily to all of these events. If you can walk around with a smile on your face and bitterness not in your heart then you can tell me it is all about God and how to handle life. Until then, ignore me if you will because I am having a really hard time believing that it is God's will for my daughter to have these problems and having trouble understanding that, "all things work to good for those that love the Lord".

On a more positive note, I do believe it is part of the perfect plan that I am home right now to take care of my precious girls. I only hope I can maintain my sanity during the process. Good night all and sorry for the venting, but I warned you from the beginning.

90/10, I say 10/90 - 90% of what happens to me I can't control and it is the way I react that controls the other 10% of my day. That just sounds more realistic. Of course, I only teach 5th grade math so one could argue I am wrong.

A Trip to Duke

2009-10-19T15:05:00.000-07:00

Kyleigh and I took an un-expected trip to Duke today. We were seen at the Duke ENT in Durham that is considered the "community" clinic. We saw a Dr. Ryan. She was very nice and good with babies. My mom went with me. Kyleigh's ear drum is "irritated" and that is what caused the bleeding. The constant inflammation from the ear infections can lead to bleeding. So at least we got an answer. She said the blood has cleared except some around the tube, but the tube is clear and open which is good news. She said to continue the Ciprodex drops and keep our appointment with Dr. Kaylie the surgeon next week. She also couldn't understand the delay in the cleft palate surgery. She agrees that it is a catch 22 situation where Kyleigh can't get any better and bigger if she can't keep healthy from ear infections and she will keep infections as long as the palate is not repaired. Why is it that all of the doctor's won't get on the same page? Don't get my wrong, I don't want them to do a surgery that she isn't ready for and that could cause complications if done too early. However, I am exhausted with her remaining sick with infections that occur because of the palate. That's all for now.

Kyleigh Update and Another Ear Problem

2009-10-16T17:04:00.001-07:00

So today Kyleigh was able to meet my students as I went by the school to drop off paperwork and say hello. Afterwards Kyleigh saw her nutritionist at the home. According to her records since September 10th, Kyleigh went from 67 cm to 69 cm in length and from 13 lbs 2 oz to 13 lbs 13 oz in weight. This is absolutely amazing considering the turmoil she has been through since September 10th. She has had the tube replaced in her left ear, a severe ear infection in the left ear, formula change, and eating difficulties.

She went down for a nap around 11am and awoke around 11:25 with a screeching scream. There was a quarter size amount of blood in her crib under neath her head. I was completely astonished because she had recovered quickly from the last surgery on 9-22 without any blood and since the last ear infection, had received an all clear by the ENT surgeon this past Monday. We headed straight for the pediatrician's office. They said she definitely has a gelatinous blood clot laying over the opening of the tube. There is an "unknown" explanation as to why it began bleeding to begin with. Assumptions are that she had an infection that was building and the pressure caused a rupture and bleeding. Another assumption was the unexplained. Nice, huh?

I'm so tired of getting no clear cut answers for her health. The doctor is new to the practice and very nice. He said we should question the need to wait on cleft palate surgery if indeed the cleft palate is going to continue to play a role in the ear infections. He also said we should switch ear drops to Ciprodex today and see her ENT either Monday or Tuesday, latest Wednesday to have them look at the clot.

Sounds easy enough except when I call for her ENT doctor at Duke I'm told he is "out of the office" this coming week "sorry". WHAT???!!! He is always "out of the office". Supposedly at a conference this coming week and they would get back to me if his associate could see us. They call back and his associate will be out as well but said since she has seen the pediatrician and is on an eardrop there isn't much else they would do at this point so just schedule to see Dr. Kaylie when he returns. Again.....WHAT????!!!! So we are scheduled for October 27th, never mind that she is supposed to be seen by Wednesday at the latest. Why does one doctor see this as urgency and the doctor that can help us is out of town and his associate says, "it can wait". Would everyone just get on the same page----PLEASE!

So I've put a call into the pediatrician asking that they get us in with the local ENT for a consultation visit and 2nd opinion next week. I am still waiting to hear from them regarding this appointment.

After the appointment Kyleigh went by the daycare to say "good-bye" to her wonderful teachers and give hugs and collect belongings. For those of you in the dark about this, I am on a medical leave of absence to care for Kyleigh so we have taken her out of daycare for the next 6 months in the attempt to get her back on track including cleft palate surgery and recovery.

That is all for now..stay tuned for more updates.