Thursday, December 24, 2009

Happy 1st Birthday Kyleigh Grace!

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.

Wednesday, December 9, 2009

Beautiful Baby

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

Friday, December 4, 2009

New glasses and Itchy Skin

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 .


Wednesday, December 2, 2009

Kyleigh Update on Feeding Issues

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!!!!

Sunday, November 29, 2009

Kaitlyn's Cute Antics

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!!!!

Thursday, November 26, 2009

Happy Thanksgiving 2009

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.

Tuesday, November 24, 2009

Eye Update for Both Girls

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!

Thursday, November 19, 2009

11 months ago---and counting

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.


Wednesday, November 18, 2009

Kaitlyn and Kyleigh's Update

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!

Tuesday, November 17, 2009

Unseen and Unexpected Blessings

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!

Monday, November 2, 2009

Kyleigh Update and today's adventures

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!!!

Sunday, November 1, 2009

Happy Halloween!

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

Tuesday, October 27, 2009

We Have Been Blessed....

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."

Friday, October 23, 2009

H1N1 ---- Go Away Germs!

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.

Wednesday, October 21, 2009

It is rough to be sick and 4 years old

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.


Tuesday, October 20, 2009

The 90/10 Principle

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.

Monday, October 19, 2009

A Trip to Duke

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.

Friday, October 16, 2009

Kyleigh Update and Another Ear Problem

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.

Tuesday, October 13, 2009

ENT update

Monday morning didn't work as planned. I awoke in the middle of the night with fever, chills and vomiting. So my mom and dad took Kyleigh to Duke ENT appointment. Thank goodness they were available to help.

Anyways, mom said Kyleigh did great for the hearing test and that her ear infection has cleared up. However, the tubes are no guarantee that she won't develop ear infections just means the infection can drain like it did this past time.

Since I was so sick my parents have kept Kyleigh at their house and I haven't had contact with Kaitlyn either. I am feeling better and hope to see both my girls this evening.


Sunday, October 11, 2009

Results are in...

Kyleigh's blood work came in last night. She has a low White Blood Cell Count but it is to be expected to since she has been sick and on antibiotics for so long and they saw the type of cells they wanted to see (whatever that means...I'm no doctor). Also, her sodium and CO2 was low but she has had diarrhea and vomiting and been on pedialyte for so long that was within normal limits too. All that said, we didn't have to go in for an IV of antibiotics or fluids- PRAISE GOD. And she slept better last night for the first night in a very long time. She has taken the new ProSobee formula better today. She is up to a consumption of 4 ounces today already which is major for her since she was only consuming 1-2 ounces per day this past week. She also managed to get a slimy, yet satisfying banana in her tummy this morning. She is perking up and starting to get back to her playful self. This makes me so very happy. Tomorrow we are off to Duke for the ENT and hearing appointment.

Saturday, October 10, 2009

Waiting...

Kyleigh went to the pediatrician today to find out why she was still vomiting, having diarrhea and refusing to eat or drink. They took blood work and we are waiting on the results...still. They drew blood at 2:00 and we are still waiting.... I can only hope that the phrase, "No news is good news" applies in this situation. If her blood work comes back abnormal it can mean one of two things- she needs an IV and hospitalization or a strong antibiotic. Either way I don't like the results. She just finished an antibiotic for her ear infection and the ear is looking better.

The doctor also wanted us to try her on Soy Milk. He said that even though she has a milk allergy she may be able to tolerate soy and it could be that she has grown a dislike for the Elecare. Point is we need her to eat so although I just placed an order for $200 of Elecare to be delivered, we are going to try the soy. However, she has resisted it so far too. She purses her lips together to the point that you would need to pry her lips open to insert the bottle nipple and that is not even worth it.

So, again---we just wait. I'll update later when I know more.

Friday, October 9, 2009

Kyleigh Update

Kyleigh is still struggling with this ear infection and her eating. She has been taking Pedialyte and Jello made with Pedialyte better today. She takes about 2 ounces at a time. I spoke with Dr. O'Kelley and he said to try and introduce her formula and solids again because her electrolytes may be off. She has continued to have diarrhea. I just offered her formula and she took 2 ounces successfully but unfortunately it didn't stay in her. Please pray that she gets over this quickly and we don't end up going in tomorrow. If her body doesn't accept food soon she will be facing an IV.

Wednesday, October 7, 2009

Rain Buckets Keep Falling on My Head

I know what you are thinking...the song is supposed to be "rain drops keep falling on my head", but honestly this past week has felt more like buckets of rain being poured over me. We just can't get ahead of the bad cloud---

Kyleigh sick since Friday- ear infection worse
Kyleigh refusing to eat all weekend through Tuesday evening
Van breaks down on side of highway

Then finally- Kyleigh drinks 3 ounces of formula for me last night. There was an celebration of joy in our house as my mom, Kaitlyn and myself shouted praises for her. It had been 5 days since she had taken more than 1-2 ounces at a time. She was so content.

Van is hopefully going to get fixed this afternoon.

Kyleigh drank another 3 ounces this morning :)
Now if we can just keep her improving and eating. She needs to gain weight and stay healthy.

So it appears that the rain cloud may be clearing---one can hope, right?

That's all for now.

Sunday, October 4, 2009

Kyleigh and another Ear Infection

My poor sweetie has yet another ear infection. Those tubes aren't magical that is for sure! It is her worst infection yet if you ask me because she never ran a fever with one before and this time she has had a fever and yucky green sticky stuff oozing out of her nose and ear. Eeewww---gross! She is such a good baby though. Despite it all she still smiles and laughs in between the pitiful cries of pain. The biggest problem we face is the little peanut has lost weight and she is struggling to put it back on. At her nine month check up she was 13 lb 4oz and this past Friday she was 12 lb 6 oz with clothing and diaper. Since Friday she has really not taken a bottle very well. It has been a struggle to get her to take in more than 2 ounces at a time. However, she loves to scarf down a bowl of yummy solid food so that is the route we are taking at this point. We have offered her solids mostly today because she must put the weight back on and she is definitely hungry. I only pray this season of sickness passes quickly.

PS If one more person says, "that's what happens in the winter months at daycare--- I just might lose it!!!"

Saturday, September 26, 2009

Puddles and Fun in the Rain

Kaitlyn loves a rainy day because that means she gets to use her umbrella that mawmaw and pawpaw gave her for her birthday. She especially enjoyed the rain today because daddy was home and he was willing to go outside and jump puddles with her as she wore her rainboots, rain coat, and carried her umbrella. She was so cute and happy to be outside in the rain. I was content being inside and would love to see the rain---go away!



Thursday, September 24, 2009

Kait-- Kait----lyn---lyn----

So Dennis created a cute song to help Kaitlyn learn the letters of her name for preK. It follows the tune of "Are you sleeping".

"K-A-I-T" repeat "K - A- I- T"
"L - Y- N" repeat "L - Y- N"
That spells "Kaitlyn" That spells "Kaitlyn"

"Kaitlyn Ann" "Kaitlyn Ann"

Soooooo cute to hear her sing it!

Thursday, September 17, 2009

Kyleigh's Surgery Update

Kyleigh had the tube in her left ear replaced this morning. We were up bright and early at 4am and on the road by 4:30 to arrive at Duke by 6am. They took us back rather quickly and had her change into her gown. The anesthesiologist and Dr. Kaylie didn't come until closer to 7:30. It was a long wait but Kyleigh did well considering her last meal was 6:30 last night. She refused juice and pedialyte this morning so by this point she was starving and frustrated.

The surgery began at 8:05 and was finished by 8:20. We were back there with her and she was drinking a bottle by 8:30. Once she had a bottle she was happy for a while. She cried some and played some in the car while I took a much needed nap (too bad Dennis had to drive - no nap for daddy). Once home she was fussy again until she ate, then fussy again until another long nap. During the afternoon she was smiling and happy for the most part which was a relief as we sat in the finance department office at Kia. (Oh yeah, that's right I now have a Mommy Mobile thanks to my dad and Dennis!). Anyways, she didn't get fussy again until it was time to go home.

Once home she took another bottle and collapsed in my arms. She was in her crib asleep before 6pm. Poor baby! I hope she sleeps well, has NO bleeding, and no pain.
Thanks for all of the prayers and kind words.


Saturday, September 12, 2009

Holding her own bottle-

Kyleigh was sitting in my friend Kristen's lap tonight and she grabbed her own bottle and put it in her mouth. It was absolutely precious to watch her hold her own bottle. You could tell she was so proud and she knew she had done something. I will post a pic later. Yippee Kyleigh!

Thursday, September 10, 2009

Recap

So it appears that many don't see the humor of last night's prayer because they don't know the original version we say each night-

Our prayers go like this-

"Now I lay me down to sleep,
I pray the Lord my soul to keep,
Angels watch over me through the night,
until I wake with morning light...Amen"

"Bless Mommy, Daddy, Kaitlyn, Kyleigh, Mawmaw, Pawpaw, Nana, Grandma Foster, Grandpa Foster, Ms. Caraway, Ms. Mathis, Ms. Lesley and all my friends"

Well last night and tonight she asked for the animals to watch over her while she waited on morning time and she prayed for every teacher she had at Friendly plus the teachers' she has now. So cute! Then she just had to run and tell her daddy that she prayed all by herself.

Wednesday, September 9, 2009

A Simple Child's Prayer...

"Now I lay me down to sleep,
I pray the Lord my soul to keep,
Animals watch me thru the night,
Keep me safe all morning light - Amen!"

"Bless Mommy, Daddy, Kaitlyn, Kyleigh, Mawmaw, Pawpaw, Nana, Grandma Foster, Grandma Foster (yes she said it twice), Ms. Caraway, Ms. Mathis, Ms. Leslie and all my friends" Amen!

This was Kaitlyn's prayer tonight. She said it all by herself but it was hilarious!

Kyleigh's update

Today Kyleigh went for her pre-op appointment at Duke to prepare for next weeks surgery to replace the tube in the left ear. It was quick and painless. She measured at 70 cm---wowsers!!! She is getting so long. They said she was at the 50%tile for her length now.

We then headed over to the eye clinic to have her glasses adjusted so that they would not pinch her head and they would stay on better. That only took a short while and we were on our way back to Greensboro.

Once in Greensboro we headed to see Dr. O'Kelley the pediatrician. They re-weighed her and she weighed 13 lbs 8oz (6 more oz than this morning but was probably the diaper and clothes). Dr. O'Kelley was pleased with her growth and how much healthier she appeared to him. He commented that her tone was more fleshy and she was a happier baby today than he had ever seen. That is because he always sees her when she is sick. Anyways, he also said at her 9 month checkup in 2 weeks that we could get the flu vaccine and then later in October when it became available she could get the H1N1 vaccine as well.

All good news!


Friday, September 4, 2009

Back to School Sickness

So it seems that back to school brought viruses back to our home. Dennis has had a sore throat for a few days now. Kaitlyn has been coughing and a runny nose. Kyleigh has some congestion and really fussy that turned out to be another ear infection - no thanks to the tube in the left ear that is still malfunctioning. To top it off, today I woke with a fever, headache, chills, bodyaches and a seriously sore throat. What a mess and just before a long 3 day weekend that was supposed to be full of family time and friends - urr! Hopefully this will give us all time to get rested and well before another work week begins. Kyleigh has lost weight again and it is mainly due to her reduced eating that is probably due to the ear infection. This Wednesday we go for a pre-op appointment to have the ear tube replaced the following Thursday, Sept 17th. After the pre-op she has a recheck with the pediatrician for her weight and ear. She is now 12lbs 2 oz and hopefully with the antibiotic she will increase her eating again and put on a few more ounces or maybe even a pound before next week. Despite it all Kyleigh has adjusted well to Friendly Avenue and Kaitlyn loves PreK and her new teachers.

Hoping everyone else is enjoying their Labor Day weekend.

Thursday, August 27, 2009

Kaitlyn's Big Day

Today was Kaitlyn's first day at PreK in the "big" school. She went to work with her daddy. Her teacher's name is Ms. Caraway. She is in the PreK classroom at Shadybrook She was so excited to begin her big day and very proud of her bookbag that Kristen had given her for Christmas last year with her name on it. She is standing on the steps outside of the PreK trailer.
She is so excited to be in her room and ready to meet new friends!
Today she took a tour of the entire school. She played in learning centers where she painted on the easel and had a great time. They even listened to the story "The Gingerbread Man" and Kaitlyn must have loved it as she talked about it as soon as she saw me. She said they sang and ran as fast as they could just like the gingerbread boy. So cute!

My little girl even ate lunch in the big cafeteria and carried her own tray. Ms. Caraway said that she rested well and even got to visit the treasure box at the end of the day. All in all it was a great success!! Yeah Kaitlyn!!! We are so proud of you!!!

Monday, August 24, 2009

Kyleigh and Kaitlyn update

The summer is over and I'm sad to see it go. I had a wonderful time home with my girls for the past 6 or so weeks despite the much traveling that occurred back and forth to hospitals and doctors. We managed to still enjoy some time at the pool, museums, library, beach and home with our girls. I am in disbelief that my little Kaitlyn begins pre-K at public school in a few short days from now. She is growing up so fast right before my eyes. She even acts like a grown little lady at times. We had her open house tonight and she was excited to see her teacher again but reserved when it came to meeting new friends.

Kyleigh had an eventful weekend that included more bleeding from the left ear. We ended up in the pediatrician office on Sunday morning just one week since the last visit. We saw Dr. O'Kelley our pediatrician and he said he felt sure that the tube had come out of her ear and caused lacerations of the ear canal when it came out. He cleaned her ear and inserted some Neosporin and told me to do the same if it started bleeding again but that it should heal itself and to stop the ear drops. Monday morning it had bled again through the night because she managed to get her mittens off and get her little finger in the ear and scratch. I'm sure it was itching as wounds often itch as they heal. Now if only we can keep her from trying to scratch until it completely heals. We have an appt on the 31st of August with the ENT so I guess we will find out then when they plan to replace the missing tube.

She has lost a few ounces since becoming sick with the most recent ear infection. Although some days her appetite is great she is still lagging behind where she needs to be. A week ago she weighed 13 lbs 0 oz and on Sunday she was 12 lbs 7 oz. However, she made up for it by eating a lot today (sweet potatoes, peaches, cereal and 3 bottles) that is a lot for her. She was happy today and very curious about the new babies at school today since it was the first day of the new year at daycare. She took only 2 short naps. So tonight she gladly took her final bottle after the bath and snuggled into bed. I hope this is a sign to come that she will be happy at her daycare and rest well each night. I missed her terribly today though but enjoyed my time with her this evening.

The most recent doctor visit also led to the discussion of how we should still treat her as a "newborn" with our handwashing techniques. Any person coming in contact with Kyleigh and planning to touch or hold her, feed her, etc should sanitize or wash their hands first. The pediatrician is very concerned about her susceptibility to the H1N1 virus and other common winter illnesses that for most children would just be plain icky but for Kyleigh could lead to set backs in her weight gain and overall health. However, we are just going to pray that God puts protection over her right now and keeps both her and Kaitlyn healthy this winter.

Well, it is time for myself and Dennis to get some much needed rest tonight as we prepare for the opening of school tomorrow with children.

Thursday, August 20, 2009

My Girls...

Kristen and I went for a much needed pedicure last night to get ready for open house this week. We took Kaitlyn along with us to have a "date" and get her nails polished. It turned out that the nail salon in Friendly Center beside of Cold Stone has kid spa chairs with DVD players. I didn't get her a full pedicure but they did paint her toes and fingers the pretty sherbert orange color that she picked out herself and as a bonus added little flower designs. Soooo cute!!! As you can tell she was grinning from ear to ear the entire time up until she fell fast asleep in her bed. It was a great experience watching her take pride in her newly painted nails and be a "big" girl out with mommy.

Kyleigh also had a busy day as she learned to sit up unassisted for the first time for 10 minutes. I am so proud of her. She is now 13 lbs and wearing 6-9 month sleepers because of the length. Her other clothes are still 3-6 months. She is mostly a happy baby and has learned to squeal and loves to hear herself squeal out loud.

It is great to be a mom to such sweet and beautiful girls.

Sunday, August 16, 2009

Another Ear Infection

Kyleigh seemed a little on the fussy side Saturday night but Sunday morning it was obvious that something was wrong. She was in pain and she was planning to cry loud and hard enough until we fixed it. Bless her heart. So of course I called Greensboro Peds and we went to see Dr. Alexander. Her tube in the left ear was still clotted (no surprise there) and there was infection building up behind the ear drum causing obvious pain. Dr. Alexander felt it was necessary to try and unblock the clot using a small amount of peroxide (.5 mL) in the ear. Then she inserted a wick (small piece of expandable foam) in her ear. She said this would allow ear drops to travel into the ear drum instead of leaking out. The peroxide worked and loosened up some of the clot as was evidence by the blood on the wick when it came out around noon. She also prescribed her an antibiotic Omnicef to take once a day. She wants to see her in the office again on Tuesday or Wednesday to recheck the ear and make sure we are making progress on clearing up the infection. Our ENT is out of town and we will not see him until Sept 14th so Dr. Alexander felt it important that Greensboro Peds follow her until then. Since the doctor's appointment this morning she has been a happier baby. She has even played and smiled again. I am so looking forward to the day that she never has to fight an ear infection again.

Monday, August 10, 2009

A mini get away---

Here are some of my favorite pictures from our mini get away this weekend to Myrtle Beach. Unfortunately you won't see Kyleigh in these pics this time as we thought it best to let her stay with mawmaw and pawpaw so she could be closer to her doctors if needed. Kaitlyn really enjoyed the extra special mommy and daddy time she received.

Kaitlyn and Mommy outside of the Aquarium -- I love this place!
"I wonder how far the ocean goes"---hmmm
Don't drop me daddy...I won't...here comes a small wave..get ready!
I'll be right back daddy...gotta have more water for the castle
Let's build it together okay dad


Thursday, August 6, 2009

Kyleigh's Eye Update

Today was the last appointment at Duke for this week. We saw the eye doctor. Dr. Freedman was pleased to tell me that her corneas appeared clearer and her pressure was remaining at a normal level in both eyes. She agreed that Kyleigh had outgrown her frames and needed new glasses. She also changed her prescription to a lower strength indicating that her eyes are improving. Of course the right eye has a greater prescription strength need because it is the weaker of the two eyes for Kyleigh. After the appointment I took the Rx to the Optical shop to have her new frames ordered. Because the Rx was being changed we needed to re-order her glasses completely and it gave us the choice of 2 different frames. However, the price of both were the same- over $200 a pair and there is no telling how long they will last her considering the last pair was less than 6 months of wearing time. The optician suggested I speak with the doctor's office to see if they could set me up on a payment plan or help us somehow with the expense because insurance will not cover the cost. As it turns out we were extremely blessed today by Dr. Freedman and her office. The Duke Peds has sponsored Kyleigh for one pair of glasses for free!!!!! Yes, completely FREE!!!! We went seeking help with payments and we got a gift that was overabundant. My eyes filled with tears with the love shown to our baby girl. I can't begin to express my gratitude to Dr. Freedman for looking out for the best for my baby. Such a caring and wonderful doctor and office. So blessed!!

We will go back in 6-8 weeks for a check-up and until then we can expect her glasses to arrive in the UPS within the next 2 weeks.

Wednesday, August 5, 2009

Cleft Palate Surgery is On Hold--

We went today for the cleft palate team review. The appointment began with a survey of her medical history and current medications. Then we met with the social worker at Duke that proceeded to explain how if the social worker at Womens' had followed through prior to our discharge we could have had SSI and Medicaid from the beginning no questions asked. However, now that she is in the care of us (her parents) we have to apply for the programs and pray we are accepted rather than denied coverage. That infuriates me to say the least but I can't change that now. All I can do is go on Friday and apply in person at the local SSI office. Then we met with the speech department that has followed her feedings up through now. She reiterated the importance of getting rid of the pacifier months prior to surgery. She reminded us that her arms would have "no-no's" or restrictive bands to prevent her from putting her hands or objects in her mouth. The first night after surgery she will not tolerate much but will need to drink from a cup (can be small sips from a medicine cup). Nevertheless, she gave us the good news of that she can have her bottle back the next day as long as the pigeon valve is in the nipple preventing her from getting a full suction. Then we met wiht the ENT that confirmed her tube is still clogged and he will need to replace the tube at some point. Until then, for the next two weeks we are to continue ear drops.

After a lunch break we met with Dr. Georgiade, the surgeon, to review the cleft palate surgery. He was not pleased with her overall growth to this point. He explained the surgery and discussed the risks involved in surgery. He was hoping that by 8 months (or soon to be 8 months of age) she would be much bigger. He never gave a weight goal or percentage but indicated that her small size made the surgery a risk for her. So he is asking our pediatrician to offer up a suggested date of when she may be ready for surgery and then he plans to buffer that time by adding on a few more months. He said that although typically the surgery is completed by 10-12 months of age it may be that Kyleigh's surgery is going to be between 12-16 months or longer if needed.

I was actually relieved to get this information. Although I know repairing her cleft palate may make eating an easier task in the long run I agree that she is still just so small for her age. She weighed 12 lbs 7 oz at the pediatricians' office today and for a 7 month old that is just tiny! So for now, the surgery is on hold and we are waiting for the doctors' to contact us with a date that they feel is appropriate.

Monday, August 3, 2009

ENT Update and the week ahead

Today was the first of many appointments this week at Duke for Kyleigh. The morning started out very stressful as I was running behind schedule with getting myself and the girls ready and on the road. However, we made it to Duke on time but spent 10 minutes searching for a spot in the parking garage----grrrr. Anyways, we were late to the appointment but luckily they took us on back anyways. She saw the ENT doctor today because we ended up on oral antibiotics and new ear drops from the pediatrician due to an ear infection in the left ear. Dr. Kaylie (ENT) wanted to recheck her ear today. The right ear still looks picture perfect. The left ear is no longer infected but still has a blood clot blocking the tube from functioning properly. We are to continue the ear drops in hopes that it will help release the blood clot. However, Dr. Kaylie is prepared that we may have to replace this tube in the near future. He said it can be done at the same time as her cleft palate repair but that could mean more ear infections until then. Otherwise we would have to do another round of anesthesia separate and they frown upon having to put her under too many times unless absolutely necessary. Since we return on Wednesday to Duke for the Cleft Palate Review team to set a date for surgery and he serves on this team, a decision will be made as to whether a separate surgical procedure is necessary of if it can wait until cleft palate repair. Wednesday is the long day of appointments as each specialists that has a role in her recovery and surgery will be present to review her progress and growth on this day. We report to Duke at 8:45 am and will be there most of the day. Then we return on Thursday for her to have her eyes rechecked to make sure the new eye drop is continuing to maintain her pressure at an appropriate level.

Needless to say this is a stressful week. I am so thankful it is still summer break and I am not having to deal with working and appointments at the same time. However, it doesn't change the fact that we are spending more time in the car this week and at Duke than we are enjoying summer days. Today I met a stranger while at Duke that helped make the stress of today melt away. Her name is Marie and she was just an ordinary lady there for a follow-up at Duke and was using the restroom at the same time we were. However, she could sense the stress level I was under evidently with 2 small children and she offered to help Kaitlyn wash her hands. Before that another lady gave up her spot in line to allow Kaitlyn to potty first (how sweet was that!). Then Marie not only helped Kaitlyn wash her hands but she also offered to help me to the car because she was heading to the parking garage anyways and she said it looked like I could use another pair of hands to push the stroller. I wasn't weirded out by her offer as I usually would have been. Instead I graciously accepted the offer at this point and we talked to the car about her being a teacher and mother. She was so nice. She asked where we lived and then offered to give us a place to rest if we needed on our many trips back and forth to Duke. She proceeded to write down her contact information and told me she was serious about the offer and wanted me to know that she just felt strongly it was the right thing to do today. How awesome was that. It was as if God sent me a little piece of happiness in the form of a stranger to help lighten my load. Sometimes I think I'm super woman and I can handle it all by myself. Today, I was handling it just fine I thought but it was so nice to have a moment of help from a complete stranger. There are still nice people in this world.

Please continue to keep Kyleigh in your prayers.

Sunday, July 26, 2009

Kaitlyn's Birthday - 4 years old

I wonder if you need a license to drive this? Wait, do they give a license to 4 year olds?I can do it by myself - ski ball at Celebration Station
Whoa Daddy watch out for that tree!!!
Hold on Kaitlyn we are going to crash!
That was so much fun!!!

Kaitlyn turned 4 today - July 26th! Yesterday she had friends to the Little Gym of Greensboro for F-U-N Cheerleading plus gymnastics, cake, and presents. It was a blast. Today we awoke and took her to breakfast at Biscuitville, church, Celebration Station and then had my parents, mamaw and papaw, his mom, and neighbors over for cake and icecream and more presents. She absolutely loved the umbrella that my parents gave her. She has been begging for her own now for quite some time. She also got a big girl bike from us with a new helmet from her Nana. We ended the day spending it with her friend Hadley as they rode bikes in Hadley's neighborhood. Such an eventful birthday.

Saturday, July 25, 2009

ER times 2 in one night

Wednesday, July 23rd Kyleigh went to Duke to have tubes placed in both ears due to recurrent ear infections. The procedure went well and we came home by noon the same day. It seemed that we were in the clear. Thursday she took a very long nap which is great but somewhat unusual considering it was 2.5 hours in length. I began to suspect she wasn't feeling well or about to hit a milestone as they will sometimes do when babies sleep more. That evening around 5 pm (7-24-05) she was fussy and I thought she may be preparing for an early bedtime. I gave her a bottle and placed her in bed while starting her nighttime meds that included ear drops. After placing the first set of drops in her left ear and turning her over to place them in the right ear she began crying. I looked and saw bright red blood coming out of her left ear as if it was a fast nose bleed. I was so scared. I do not do well with the sight of blood coming from my children.
I immediately called the pediatrician office since it was close to 5pm hoping they could see us still right away. The emergent nurse was great and helped talk me through the situation. After applying a wash cloth to the ear for 10 minutes the bleeding appeared to stop. The nurse indicated I should call the ENT at Duke for further instructions since Greensboro Peds was closed for the day. I called and spoke to the ENT on call at Duke. Dr. Miller said it sounded like she may have just had some blood in there from surgery and pressure may have built up and released the blood. He said if it returned to call back but in the meantime give her Motrin for pain relief. I gave her Motrin and she lay in bed cooing and playing until she fell asleep. She slept about 20 minutes before waking me with a shrill scream cry. I returned to her crib to find a small pool of blood under her left ear the size of a nickel. It was still bleeding. I called the ENT back immediately and he informed me to get her to the nearest pediatric ER to be seen. This is Moses Cone Hospital so we loaded up and headed that direction.
They got us in almost immediately and the doctor in the pediatric ER came in within the 1/2 hour of our arrival. She was very concerned because she could see the tube in her right ear but the left ear seemed covered by blood. So she had a nurse come in and they suctioned out the blood from her ear with a catheter so she could get a better view. Unfortunately, the blood began to fill the ear canal within minutes of suctioning it out. This was not a good sign. Her ear drum looked "funny" according to the doctor and the tube was no where to be found at this point. The doctor contacted Dr. Miller at Duke to get an idea of what would be best for Kyleigh.
At around 9pm the doctor came in to tell me that Kyleigh needed to be seen at Duke by the ENT doctors there and it would be best to have them conduct a CT scan at Duke to look for the tube and be prepared for taking care of any repairs needed. The policy is when transferring a child from one hospital to another the patient must go by EMS. So an ambulance was called for transporting Kyleigh from Moses Cone to Duke on Thursday night. Thankfully, our friend Kristen was there with me and was able to help me call Dennis to tell him to prepare for the trip. Then Kristen went and spent the night with Kaitlyn so we wouldn't have to wake her from sleep. Dennis headed for Duke and I waited patiently for the EMS. The EMS didn't show until 11:30. We were loaded in the ambulance and on the road by 11:50 and within 30 minutes we were pulling into the Duke Emergency Room parking lot. Wow--talk about a fast drive.
Backing up a little in the story, I had to go to my car to get the car seat base for the travel in the ambulance so that she would be as safe as possible. The parking lot at Moses Cone is SCARY at 11:40 at night. A man was leaning on the hood of my car as I approached the parking lot. I hit my alarm button and he staggered up and away to a few cars down. I was petrified but on a mission to get the carseat out of my car and back to my baby girl that needed me. Needless to say it all turned out fine but whoa---I was so nervous.
Dennis was at Duke when we arrived. We were taken straight to the pediatric ER and the ENT doctor met us there to look in her ear. He had to suction out more blood and use a special tool that located the tube in her left ear. Kyleigh was screaming and crying and it was tearing my heart apart with each cry. The doctor stopped the examination and determined it would be best to admit her to the hospital for the night and schedule an exam under anesthesia and prep for surgery in the morning. So we began the long journey of watching her get an IV and prep for staying the night. We were in the ER until past 4 am until finally transferred to a room upstairs on the children's floor. We arrive to our room and of course they have to examine Kyleigh and we had paperwork to complete. It was almost 6 am before we were left alone to lay down on the small chair that pulls out for a bed. Kyleigh was not resting well at all. I was up and down every 5 minutes. Finally around 7am they gave her morphine in her IV for pain and she settled down. We were able to get a few moments of rest, not real sleep because it was not possible. Then the doctors came in on their morning rounds to check her. They said they would be back to take her to surgery soon.
Around 9am the doctor that did the tubes on Wednesday came in after being alerted that Kyleigh was admitted to the hospital. He came in and examined Kyleigh's ear and said the blood there and he could see the tube and it looked in the appropriate spot. The blood was a clot that is behind the ear drum and around the tube. He said that given another antibiotic ear drop and time the blood clot will dissolve and she will be fine. This means be prepared to see more blood come out of her ear at some point and time. Until then we will see the doctor again on August 5th for a recheck at the Cleft Palate team review. If she begins running a fever or has prefuse bleeding then we should call immediately. The surgery was postponed and we were discharged by 11 am and heading home.
Such an exhausting 24 hours but so thankful that it is only a blood clot and not a perforation of the ear drum or a problem that would cause future harm for her hearing. During the day on Friday Kaitlyn stayed with Kristy and Kaitlyn. We had so many friends call and send messages of hope and prayers. We thank everyone for standing by our side when times get tough. It means so much to know we have people we can count on. I only hope that Kyleigh continues to move past this moment and her ear continues to heal.
Of course the thing I learned the most is you can't assume that any procedure is going to be "easy" when it comes to my little girls!

Monday, July 20, 2009

Back to Square One

So the interview didn't go so well and the county is pushing for a full-time person to take the position. That doesn't help me out very much considering the whole purpose was so I would have flexibility in my schedule to take Kyleigh to school, appointments, etc. Unfortunately, this has brought us back to the unpopular decision of me working full-time. I am very disheartened by this decision and now can only pray that God will put the right caregivers in our path to watch over our angel while we are working. Please help me use discernment deciding the correct person(s) to watch her while I am working. Also pray for me that I will come to terms with this decision and live in peace knowing that what doesn't kill me will make me stronger and God will take care of my family.

On Wednesday, Kyleigh will go in for tubes in her ears. I'm actually looking forward to this appointment as I believe it will make the world of difference in how she feels. She has had too many ear infections and has been living with fluid just sitting on her ears. That can't be fun. Pray for her and the doctor that it will go as smoothly as I have been told that it will for her sake. We do get to come home on the same day this time --- woohoo!!! We don't have to spend the night at Duke---yippee!!!!


Sunday, July 12, 2009

Changes

So after much deliberation, prayer, tears, discussion, weighing of pros and cons--however you wish to view it--Dennis and I came to the conclusion that me working as a full time classroom teacher was not in the best interest of our family or the students I would be teaching next year. Therefore, I am taking a year off from teaching but pursuing 1/2 time employment so that I can still support our family financially as well as have flexibility for taking the girls to the doctor and all of their many appointments.

Tomorrow (Monday, July 13th) I have an interview scheduled at 12:30 pm for a potential 1/2 time position within GCS. This position is as a curriculum facilitator. I am excited about the possibility of this position and the change that it brings for myself and my family. However, I am also very nervous about the interview and the possibility that I may be up against other very qualified individuals for this job. It would be so great to know after the interview that this position is where God has led me for next year and that all will be well for us. And if I don't get this position, then I pray God shows me the path I need to take so that I can quickly resolve the anxiety of being financially stressed.

Please pray for me in the morning as I prepare for this interview. Pray for me at lunch while I'm at the interview. Pray for me after the interview that I will have patience and await a response. Pray for Dennis as he stands beside me (metaphorically speaking) during this season of change. Just pray! Thanks everyone.

Friday, July 10, 2009

Kyleigh Update

This week Kyleigh went to see the ENT at Duke, Dr. Kaylie. He decided it was the best interest to have tubes inserted since Kyleigh continues to struggle with recurrent ear infections. The surgery is scheduled for July 22nd. We went today for the pre-op appoinment. We also saw Dr. Ulshen, her GI doctor, today in regards to her reflux. He agreed that her reflux is severe but is glad to see that according to her records at Duke she is gaining weight. She is well below the growth curve chart in weight;however, she is continuing to climb on her own curve and following her own growth path. This is encouraging. He said to watch for signs of dehydration if she has too many episodes of refusing to eat but that hopefully this will pass as she has had some good days for feeding recently. He increased her Baclofen meds to assist in calming the reflux. We began the gradual increase of the meds today. It was a long day on the road to and from Duke but she was a trooper. The exhausting day caught up with her and the crankiness set in this evening. But after a nice bath and pj's she settled in and finally fell into a good sleep. I'm praying this increase of medicine will not have any adverse side effects such as "floppiness" as the doctor described or "excessive sleepiness/drowsiness", rather I hope and pray that it will decrease her reflux episodes to zero or close enough that she can go through a day pain free with eating.

Saturday, July 4, 2009

4th of July Outfits and Kaitlyn's Tomato Garden

I have a red tomato!
It is so cool and it is mine!
See mom!
I'm just chillin' in my flag onesie!
I'm so cute!
Kaitlyn and her daddy planted a flower and tomato garden in April. Today she was able to pick her first red tomato from the vine. She was so proud and keeps asking when she can eat it! The girls both had on spirit wear for the day. Kaitlyn's happens to be last years dress with capris added since the length has shortened. Kyleigh began the day wearing a dress that was a little too big so we switched over to this cute onesie given to her by Heather with a small embroidered flag. So cute! Kaitlyn and her daddy went to a family cook out and then on to Creekside park for some 4th of July fireworks and festivities while Kyleigh and myself hung out at home. Kyleigh has been running a fever most of the day (probably due to shots yesterday or even teething but we stayed in to give her time to rest). It was nice to be able to clean the house without interruptions although I did miss seeing everyone. Enjoy the pics!

Friday, July 3, 2009

6 month check up

Weight- 10 lb 9 oz
Length- 25 1/4 in long
Head Circumference - 39.9 cm

They are pleased with her length and head circumference growth but concerned that her weight has plateaued out. She has always been below the growth chart curve but she was following her own curve at a nice rate. Now she is not doing that plus the recent refusal for eating hasn't helped. They are concerned about the "black" stringy stuff in her poop this week. They want me to get a sample from her diaper and bring it in on a culture swab. They want to check to see if it is blood or infection. There is a chance that with all of the antibiotics she has been on that the good flora of her tummy was killed and the bad stuff is taking over. Her last diaper showed a normal looking poo but smelled really bad. I hope to get sample into the doctor tomorrow morning, otherwise it may be Monday before we know anything. They have also put a call into Duke ENT and requested her tube surgery be put high priority rather than wait until she is 10 months or one year of age. We go see the ENT on Tuesday so I guess we will have an appt for tubes made at that time.

She had her shots today too and she did very well. She cried of course but after about 20 seconds she took a deep breath and then sighed and sucked on her paci as if to say, "I'm okay". It was sweet. That's all for now.
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