Feeding Therapy Evaluation

Today we took Kaylie in for her feeding evaluation at Our Children's House of Baylor. This was a very difficult appointment to get. We made it 3 months ago and today was the earliest they could get us in. Here is a short recap...

*Under weight
*Not eating enough
*Texture issues
*Refluxing
*Concerns about growth

Does any of this sound any different to what we already knew?!? The only difference is how they are planning on treating this. Instead of coming to our house 4X's a month like ECI does we will go to them for intensive therapy 2X's a week. We will see an occupational therapist for sensory concerns, a dietitian, and a speech therapist. The occupational therapists goal will be to get her past some of her texture issues. They feel that if she will not touch things why would she eat them. Makes sense! The speech therapist will focus on feeding. During these sessions Kaylie will be taken away to do her therapy with out us. Our hopes are that she will eat for them and they can help eliminate the unnecessary behaviors that she is showing.

In regards to her diet...We are changing her formula making it 30 calories. Instead of 6 oz of water with 3 3/4 scoops of formula we are now going to be giving her 5 oz of water with 4 scoops of formula. The other thing we are going to do is add butter to her purees. They think this will go over better than vegetable oil. It will give her food better taste.

The Potential Bummer...If in a month we have not seen significant change in her eating and weight gain they will recommend a in hospital stay. My first thought was a few days will be fine if it takes care of the problem. Yeah...I was quickly informed that it will be a 4 week hospital stay!!!!!!!!!!! Yes, 4 weeks. The first week you can only visit at night. The second week you get to watch through a glass window. The 3rd week they teach you and the 4th week you feed her. Yippee! Let's do it tomorrow! Right now I can't even imagine it.

After we talked they quickly expressed their concern about the reflux. Their hopes are that the reflux could possibly be the main problem and if so taking care of that may actually fix everything else keeping us from even having to go to the next step. They also said that if we see any growth at all it will buy us time putting off this for hopefully good.

Thinking stressing about the 4 week thing was really the worst case scenario I called her GI doctor to talk to him. He is one of the most relaxed people you would meet and always tells me she is fine. The time we went 2 months with a negative weight gain he told me he was only medium worried. Since she gained weight his concern has gone down. This past six weeks we have been faced with another round of weight loss. She has gained very little weight and he has been some what reluctant to comment on it. Last week when I talked to him on the phone he told me not to worry until he saw her again. I think he was confident that starting her back on her appetite stimulant would help. Today she weighed 16 lbs. 2 oz. at the hospital. That was right after she had eaten a stage 1 banana and drank a bottle. This would most likely put her under 16 lbs. After bringing up the weight gain I told him what they were suggesting. He was glad to hear they were going to be working with her 2X's a week. When I told him about their thoughts for the 4 week "boot camp" as he calls it I could have bet he was going to tell me they were crazy. I was shocked when he agreed with them. What!!!!!!!!!!!! He has never been this quick to agree with things. He told me that if things do not improve she is going to have to do boot camp. He said it is the worst four weeks for a parent but the end result can be worth it. He said that this would be the step before looking at surgery. S-U-R-G-E-R-Y?!? Before it was just putting a tube in her nose, now it's surgery. Of course I want to do the less invasive before we do surgery. We go back to see him on Thursday. Nothing major will be decided for at least a month. That will give her enough time to see if the feeding therapy will actually work.

Several of her doctors have asked about her endocrine levels. After talking about it with my GI doctor I called my pediatrician to ask him about it. I talked with his head nurse and she said she would ask the doctor and call me back. When she called back she said she made me an appointment with the endocrinologist. Their first available appointment was in March but as she was talking to them someone called and cancelled so she snagged that date. I know God was watching over us at that point. Hopefully, this will just add another piece to the puzzle. Even if everything is ok it will help rule things out.

The thing I can do to help...I have been told by her GI doctor that I can give her her periactin (appetite stimulant) 1 tsp 2X's a day. I have only been giving it 1 X a day because it causes severe drowsiness. I have been against this because I feel like it is taking away a part of her childhood. I am going to have to let this go. I feel like not doing this will bring about more guilt than doing this. I will always wonder what could have happened by doing this so tomorrow I will start 2X's a day and hope my child does not sleep her days away.

My main mind block comes with the fact that when you look at her you would never know she has anything going on. We have come so far and accomplished so many things I can not grasp the nature of what we are talking about. Sometimes I think maybe the doctors are just trying to find a way to "fix" her and that maybe she really isn't that bad. I then have to step back and know that they would not do something "just because." I have to remember that if they thought it was just two crazy over protective parents trying to fix something that didn't need to be fixed we would not be seeing all of these doctors and specialists.

Ultimately I know things could be a millions times worse and for that not be where we are I am grateful.

MY PRAYER REQUEST: With everything above we are asking for your prayers. Please pray that Kaylie will find the strength to eat or drink the amount she needs to thrive. Please pray that things will click for her and she will over come what ever it is that is keeping her from wanting to eat and grow. We also ask that in addition to praying for her health you pray that this will not effect who she is in the future. My biggest fear is that all of these tests and procedures are going to shape her character for the worse. After that if you can we would like prayers for Jason and I to have the strength to make it through this next stage. This next stage has the potential to be a difficult one (if we have to go to the in treatment therapy) for us and we may need a lot of support from all of our friends and family. Finally, I would like to ask that you pray for us as a family.

Jason and I are going to remain positive and hope that in a month we can report nothing but good news putting all of this behind us.