"Wyatt we miss you every minute of every day but on days like this we miss you even more."
International Pregnancy and Infant loss Awareness Day Oct.15,2011
Almost everything has settled but we are now dealing with the feeding frustration.
Ryder has never been a good eater, he struggles with texture and extreme flavors. We can't even give him baby Tylenol as he will instantly puke up everything in his belly. He will also gag and puke if something is lumpy or involves chewing and doesn't just dissolve in his mouth. He seems to do okay with crunchy things like rice cakes or crackers but we are very limited on nutritious food that he can eat. He will eat buttered toast, cheese cut in cubes and sometimes he will try cut up fruit. Everything else is crunchy or baby food consistency. We thought he was slowly getting better but he hit a wall then slowly started to get worse again. I was concerned as his little waist is so tiny and he only seems to be growing in length and not gaining any weight. Our O/T suggested she ask for a referral to be put in to the pediatric feeding team at the hospital to see if they could help. The team consists of a Feeding Therapist, Nutritionist, Psychologist and a Speech Pathologist. The night before our appointment Ryder was up all night, and I am not at all exaggerating when I say we all had max 2-3 hours sleep. Our appointment was first thing in the morning as they wanted to watch Ryder eat on an empty tummy. We sat in a room and fed Ryder many different foods while they watched from a one way mirror. After we sat and talked about ideas of new foods and what their concerns were. I am sure you can imagine having four different therapists telling you things can a bit overwhelming for a brain that didn't get any sleep. We left feeling defeated and even more limited on what Ryder can now eat. They no longer want him eating his toast or cut up cheese (which he loves and asks for at almost every meal). They are very concerned about the risk of him choking as it doesn't appear that he is chewing his food and he doesn't know that he needs to push it to the sides to chew after taking the initial bite. They don't want him eating his baby food that he actually likes and they want me to make individual puree's of all different things and to not mix the flavors. From what I gather our goal is to slowly make the puree's thicker and lumpier until he can eventually just eat a piece of cooked carrot, potato or whatever it may be. I don't think they fully understand how difficult this task is going to be or maybe they do. It's way easier to say it and be on the other end not having to deal with the daily battle of meals. When Ryder first started trying solids I made everything that went into his mouth. I wanted to keep it that way but when you spend hours making baby food and only get a a turned up nose and big mess on the floor it obviously starts to feel like a big waste of time. Right now I am just trying to process everything then I will slowly start to implement their suggestions into Ryder's feeding routine. I personally don't feel like it's something that can just happen over night. On a good note, they were not at all worried about Ryder's weight or growth :)
I'll leave you with a video Ryder and I watch when we need a little inspiration :)
WOW, Dana, I had no idea you were dealing with this too!! No clue! I really understand what you are talking about. Our eating issues have been so all-consuming. Day in, day out, food is such an essential task, such a large part of our lives. I know just what you mean when you basically said. "it's easy to be on the other end, doling out advice. No so much being the soldier in the winter trenches." :) Worrying about volume versus nutrition, versus what he is willing to eat, versus what he can eat, versus what he will grow on, blah blah blah.
ReplyDeleteI am so glad that they are not concerned about his growth, that is GREAT. One part of the battle is lessened, hallelujah! But, Dana, ugh. Stinky war to be continued. Love you!
One little thing that may give you hope. What you are describing about the textures and the puking sounds just like where we were this time last year. Today he eats any texture at all. We still struggle (mightily) with VOLUME, but texture and puking are no longer an issue, unless he is sick (like yesterday when he puked unexpectedly in the car. Fever.) Anyway, it did come, slowly.
ReplyDeleteAlso, I will always remember one of our therapists saying that it didn't surprise HER that Crew could eat pureed foods, Crew could eat crackers and cheese but could NOT eat lumpy foods with mixed textures. She said that is a typical stumbling block for children WITHOUT other eating issues. Granted, they usually overcome it a little faster and earlier than our guys.... but lumpy mixed foods is a scary and difficult thing!
Thanks Megan! That does give me hope :) Crew is always such an inspiration to us! I remember when you wrote about him eating a jam sandwich and I was SO thrilled!! It just made my day! lol I really hope Ryder follows in his foot steps and can handle all sorts of texture in the near future! xo
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