Wednesday, January 30, 2008

Little Miss Emily, January Update

*** Email received January 23. If you are unfamiliar with my friends, Mike & Dawn and their baby girl, Emily just click on the "Little Miss Emily" label to read their story.

Hello y'all,

I know that it has been some time since you last heard from me and I'm sorry. There have been many developments in the past month, I don't know where to begin.

Emily is now three months old and we finally have a team of people working for her best interest. We have met with a Physical Therapist, a Nutritionist, and a Speech Therapist. We have a meeting next Tuesday to discuss what her daily routine is going to look like and each one of them have given us something to work on in the mean time.

The major problem Emily has had since she came home from the hospital has been her feeding. We have been struggling with the bureaucracy, trying to get the nutritionist here as soon as possible. We met with her today and we finally have a game plan to help her with her feeding. She agrees with us that the problem is more than the food that she is eating. She has suggested, and we have agreed, that she needs a second opinion about her digestive track. We have changed her food two times in the last week and there has been a difference in her bowel movements, but not in her pain during the feedings. We will be making an appointment to see a specialist sometime this week. This requires a trip to the Cincinnati Children's Hospital in Ohio (about 2 hours away) but if it gets us the help we need, it will be worth it.

For now, the nutritionist has given us a prescription for a feeding pump which will allow us to feed her over a longer period of time. We will be able to put her to bed at 11:00 pm and she will get the equivalent of three feedings through the course of the night, ending at 9:00 am. Because she will be getting the food over a longer time, it will give her body the time it need to digest it at a steady pace instead of getting a stomach full at once. We will also be able to give her less food at the other three feedings, making her stomach less full and thus less irritable.

God willing, we will receive the pump tomorrow and can begin this process tomorrow evening. I can't begin to tell you how excited I am that I won't have to get up at 1:00 to feed her. Most of the time she is more awake for this feeding than I am! Dawn won't even have to get up to do the 5:00 am feeding, so she is excited also.

Things are getting better, albeit very slowly.

Last week we had our three month appointment with the pediatrician. I basically bombarded the doctor with questions. Having seen the Physical Therapist and the Speech Therapist in the mean time, they asked me questions that I could not answer and she was the one who could tell me all the answers.

Emily has a large bump on her head where two of the bones meet and there is a fear that they are not growing together correctly. As with everything else, it may be too early to tell, but if there is something wrong, we need to be proactive about it. So, we can add one more doctor to our long list of doctor appointments. This one is a Plastic Surgeon! She is three months old and is considering plastic surgery. She is going to be one beautiful baby! On a similar note, she has a birth mark on her neck that seems to be getting bigger. It looks like a bruise that keeps on growing. The doctor said that they usually get bigger before they get smaller, but because it is on her neck, it may be interfering with her head movement. This is another case for the plastic surgeon. Since we are already going for the head, we will have him look at this also. Our appointment is on February 21st, so we won't know anything till then.

So...Dawn and I are glad that things seem to be coming together, but as always, only time will tell how things are really going to progress. She still isn't taking any food from a bottle, but we are working on it and by the grace of God, she will gradually improve in this area. One good thing is that because all her food is taken
through the tube, her formula can be paid for by the insurance company. I don't know the reason, but at $7 a day, I will take the savings. As it is, we are getting bills from doctors almost daily. For such a little woman, she sure gets expensive.

I guess that is all for now. I am sure there is something that I forgot, but I have given you plenty to pray for. Our biggest concern now will be meeting with a doctor in Cincinnati and seeing what they can discover about her. Our hope is they can come to some conclusion about what the REAL problem is.

Thank you for all your continued prayers and support. There is no way we can thank you all for the love and prayers that seem to be continually coming our way. God is good and we know that Emily is going to have the best life she can because we are continually being blessed in so many different ways.

All for HIS glory,

Eph 2:4-7

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