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A long overdue update

December 8, 2008

Sorry that it has been over a week since I last posted anything, we have been a little busy here you know with Christmas coming and all. Last week, my mom came to help us "catch up" on everything from laundry to work hours for Drew. Although she was not able to help us catch up on sleep, she made our waking hours easier on our tired bodies. I commented before in a previous post on how a baby just wants their mom when they are not feeling well, I have felt that want recently with our current situation. There was something about having my mom here that made me feel more "normal". I'm not sure who she helped the most the kids, me, or Drew! Thanks Mom, we really appreciate you and all that you have done for us!
Last Friday, we had an appointment with the GI specialist and opthalmologist at CHOP. I'll start by explaining her opthalmology appointment. It was the best appointment that we have had with any specialist thus far, mainly because everything looked normal. Normal is not a word that is often used to describe Lucy. Basically, her eyes looked great and he did not see any abnormalities with her optic nerve or her retinas, which would indicate a problem with her neurological development. She has a mild esotropia, cross eye, which he attributed to the distance between her eyes and should correct when she grows. As for her GI appointment lets just say CHOP has a reputation for its giant ego, and we met their giant ego in GI. Unfortunately for us and for the doctor, Lucy's medical records were not sent to him so Drew and I basically began explaining all about Lucy's condition from day one to the present. This is not an easy thing to do despite her very young age. He interjected at times with comments about how this is not a GI issue and then concluded with how we need to see their GI nutritionist and follow up with him in a month. He ordered more labs for Lucy including another metabolic panel, we believe that this makes for the fifth metabolic panel done on Lucy. He order some other labs which he wanted to compare with some of her other labs done prior to the start of enteral feeding. We are following our metabolic doctor's orders to see all of these specialists, but at the same time we feel that we are unfamiliar with the very large medical system at CHOP and wish that there could be an easier way for all of Lucy's specialists to communicate with one another. I am currently in the process of organizing all of Lucy's medical records so that we can be even more proactive with her medical care. We are blessed with the medical resources that we have available to us, but at times we feel frustrated with the enormity of our situation. This week we have several appointments scheduled. On Thursday, Lucy will see the metabolic endocrinologist, this appointment is very important to us as we are waiting to get more information on Lucy's abnormal metabolic labs from this doctor. We are hoping that he will be able to give us some answers to Lucy's growth issues as well as other symptoms. Her metabolic doctor is anxious for this doctor's opinion as well. We again are putting all of our proverbial eggs in one basket. On Friday, we have an appointment with the CHOP GI nutritionist. They are "squeezing" us in because their next available appointment was not until January 23rd. We are hoping to get a second opinion in regards to Lucy's NG tube feedings. Hopefully this appointment will be easier than our first nutrition appointment as we are more knowledgeable now with the process of tube feeding, the learning curve was steep! Lastly, Lucy has her nine month well check next Monday. In spite of all her medical issues she of course is experiencing all of the typical baby issues that a baby of her age should be experiencing teething etc...
Lucy has been making great strides in her physical development since the introduction of enteral feeding. Overall, her energy level has increased. We have noticed that she is a much happier baby when she is awake. Before supplemental nutrition Lucy was an excessively sleepy baby. We had a very difficult time keeping her awake for longer than an hour and a half. She was moody and really only wanted to be held by Mommy and sometimes Daddy. She is still a sleepy baby, but when she is awake she has more energy than she did before and is happy to play and interact with others. This is something that we have been waiting to see all her life. She is doing what most babies do when they are eight months old! She is beginning to babble and say da da. Why do they always say da da first? You would think that after giving birth, waking every night since even before the day she was born, changing God only knows how many more diapers than da da, and spending more than 90% of her life with ma ma, she could at least give me the honor of saying ma ma first! Non the less, it's cute how she says da da for everything even for ma ma. Lucy continues to surprise us everyday! On Thursday, she learned to pull herself up to standing in her crib. She was so proud of herself! Since discovering her new ability she has been practicing a lot! Recently, when you go to lay her down she stands up, only problem she does not know how to get down by herself. This is adding a new step to her bedtime routine, stand up and cry until mommy comes to put me back down again. We repeat this several times until she is too tired to do it again. I am hoping that standing will loose its novelty soon, but I too am proud of your accomplishments Lucy. Keep going girl!
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