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!!!!
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