I had a phone conversation yesterday with Andrew's GI Dr. Motil. After discussing his difficulties with swallowing and chewing as well as getting his weight up she brought up the topice of a G-tube. It is taking us a lot longer to feed him- used to be 30 minutes for a meal but now taking 45-60 minutes. He is showing signs of penetration and aspiration by coughing after swallowing solids and liquids. She wants Andrew to gain a pound every month and is concerned that he is not getting what he needs due to the GFCF diet. I told her we would do everything we could to get him to gain weight including taking him off the diet. I am praying that we will not have to face a G-tube placement and I would really feel like I let Andrew down if that happened. If I can't help my own son then I definitely can't help others work their feeding problems out. Hopefully in a week I can introduce him to Pediasure and Carnation Instant breakfast. We'll see. I have started doing Vital Stim therapy on him to help with swallowing issues and hopefully we will see some changes in the next couple of months. He is a difficult patient and I can imagine how hard it was for the speech therapists who did this with him in the past.
For those of you who don't know yet, we have decided to become foster/adoptive parents. We are currently taking Pride parenting classes and will have a home study as well as home inspections soon. Once completed we will be ready for our first placement. We always wanted more children in our family and we feel that we will really be able to help some little folks. Although Andrew's care is some what demanding at times we know we have room in our hearts, home and family for more children. We will be fostering to adopt a child and are very excited. There is always a possibility that we will have to give a child back to their birth parents and while that is scary, I trust God and his will for our lives. Please pray for our family and for the child that will come to us.
Vegas was super fun and had to include a picture of us outside the Love-Beattles show.
5 comments:
Aww, i hate to hear that little Andrew is having more swallowing difficulties. A pound a month sounds like quite a job. I sure hope the Pediasure and Carnations help. You might also try Enlive Apple Juice. I think it comes in peach too but they're little juice boxes with 300 calories a piece. Praying VS works and he starts putting on some pounds. I'm soo happy to hear your big family news! You, Felt and Andrew certainly have a lot to offer to someone special and will be such a blessing for any child that joins your family. Love the pic of you and Felt, btw. Looks like you were having a great time!
I dont know if Andrew likes eggs but lately I have been scrambling an egg in bacon fat and adding shredded cheese. Avery seems to like(but what isnt to like with bacon fat and cheese!! :)
also whipping cream, and condensed milk add calories without much bulk.
Good luck! We are struggling to maintain Avery's weight. She seems the loose and gain the same 1.5 lbs.
btw, we will be coming to san antonio the end of may, early june. would love to get together!
Enlive apple juice works great with Brooklyn, it is a bit thicker than regular apple juice. Good luck with the eating - we struggle with that too!
I'm sorry you guys are faced with feeding issues...We are in the same boat right now. We are meeting with our ped. tomorrow to discuss our options. Caitlyn lost just over 2 lbs, and that's not the direction we wanted to go! We also use Benecalorie, because we can't get Caitlyn to drink pediasure! I even started making pancakes with benecalorie in it. I saw Ensure pudding on the shelf today...We might give that a shot too! But I do know how you feel about feeling like you're letting him down if he ends up needing the g-tube...I'll pray for you guys!
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