Sunday, December 12, 2010

Look Who's Turning 2

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!

Monday, December 6, 2010

A little delayed...post Thanksgiving Post

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.

Wednesday, November 24, 2010

Annual Family Pictures

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.


Thursday, November 11, 2010

Bye-Bye Baby Food and Bottles

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!


Sunday, October 31, 2010

Landon Scotty Wallace---Remembered Always

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

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To the dear friends and family of Landon,

On Thursday, October 28th, 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 29th, 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

Tuesday, October 26, 2010

Lollipops and Smiles

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.

Monday, October 25, 2010

Going Up...and Down...

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.

Tuesday, October 19, 2010

Viruses

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.

Monday, October 11, 2010

Can you hear me now?

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.

Monday, October 4, 2010

Update on My Mom

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.


Saturday, September 25, 2010

Genetics Testing

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.

Wednesday, September 15, 2010

We have come a long way...

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!

Tuesday, September 7, 2010

Because God Gave Us You

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.

Wednesday, August 25, 2010

Kaitlyn's First Day of Kindergarten

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!

Monday, August 16, 2010

Ponders of a Mother's Heart

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.

Thursday, August 12, 2010

Little Delayed Update

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.

Thursday, July 29, 2010

GI Appt Update

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.

Sunday, July 25, 2010

5 Years Old

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!!!

Saturday, July 17, 2010

Kyleigh's First Steps

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? video

Tuesday, July 13, 2010

Watch Kyleigh Move...

video

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!

Monday, July 12, 2010

Eye Update for Kyleigh

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!

Sunday, July 11, 2010

Genetic Testing to Come

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.


Wednesday, June 30, 2010

Recent Blessings

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.

Thursday, June 24, 2010

From Heaven...

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.

Thursday, June 17, 2010

So much changing...

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.


Thursday, June 10, 2010

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

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) 


Monday, June 7, 2010

Update on Girls

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!

Tuesday, June 1, 2010

Turn me Around

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.

Saturday, May 29, 2010

Yellow Eye Causes Concern

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.

Monday, May 24, 2010

Update on Eyes

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.

Sunday, May 23, 2010

Ears, Eyes, and Grandparents

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.

Saturday, May 1, 2010

And another thing...

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.

Monday, April 26, 2010

Kyleigh's Weight Update

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.

Tuesday, April 20, 2010

Not much change...

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.

Friday, April 16, 2010

A week to remember...

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.

Monday, April 12, 2010

ENT update

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.


Saturday, April 10, 2010

Post Op Appointment was Good

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.

Friday, April 9, 2010

Home from Surgery

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.

Thursday, April 8, 2010

Eye Surgery in the Morning

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.

Wednesday, March 31, 2010

Kyleigh's First tooth is....a

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 :)

Tuesday, March 30, 2010

Surgery is Scheduled

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!

Saturday, March 27, 2010

Allergies, Asthma and All

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!

Wednesday, March 17, 2010

Growing...Growing...Growing

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!

Saturday, March 13, 2010

First Week Was a Success

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!

Sunday, March 7, 2010

The Big Day

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.

Thursday, February 25, 2010

Growing Up So Fast

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.

Monday, February 22, 2010

Where's the Sugar?

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!

Wednesday, February 17, 2010

Bye-Bye No-No's

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!

Friday, February 12, 2010

Sickness Plague

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.

Monday, February 8, 2010

Kyleigh Update on Fever

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.

Sunday, February 7, 2010

Kyleigh's Fever Lingers

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.
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