feelings aside about me, i'm scared

thanks, they pretty much smiled and laughed the whole time they were there, trying to crawl around in their cribs but couldn't because of the "no nos" which was the probe in their nostril and the arm bands around each arm to keep it from bending. each nurse would ask "are they always this good" to which our replies were always "yeah, except during feeds".

i'm trying not to get discouraged and i know that even if there was a "smoking gun" (still could be) that it would still take time to get everything fixed but i know how long physical therapy can take and i imagine feeding therapy won't be any shorter in length. so it would appear, as of now, that we'll most likely be going to some sort of therapy a couple times a month until 1 years old probably, if not longer. because of these GI issues they are definetly behind on development when it comes to holding their own bottles, eating solids, holding spoons or sippy cups...it's going to take us a long while before we can do that. i just have to keep reminding myself that every baby develops at a different rate.

i'm glad we switched doctors but i'm kicking myself in the butt for not getting this study done at 4 months when this first started to happen.

but i'm glad that i finally was able to prove to everyone by having the professionals, doctors, feeding specialist, etc. confirm what i've been trying to tell everyone for the past 3 months...they aren't interested in food, period and the only way to get them to eat is to restrain them and never remove the nipple from the mouth to burp b/c once it's out it's not going back in easily soooo a lot of the times we get throw ups because of the lack of burping.

it IS extremely frustrating.

here are some pics of the boys' at the hospital

waiting to get told where to go

river

alexander and his "no nos"

alex happy to have everything off so he could crawl in his crib

river happy to get his IVs removed and no nos off

 

I'm glad you finally got the tests done and hopefully the probe test and culture results will tell you something. The pictures of your boys are adorable. :wub:

I just wanted to say that my boys *never* held their own bottles, didn't hold sippies until almost 13 months, and are still working on spoons at 18 months. So please don't think that your boys are behind in any way with regards to feeding based on these things. Also, there are many women who hold off on solids until 8 or 9 months until they feel their children are ready. Your boys just may not be ready yet; solids are just for "practice" until children are closer to 1 year old so you have some time.

I had a boy who had a bottle aversion, and had to be spoon feed breastmilk/formula when I wasn't around to nurse him, so I know how frustrating feeding issues can be. :hug:

Good luck.

 

Hi Kristine!
I'm so glad your boys had good test results! I've followed you since your 1st post on TS and have replied occasionally to posts about their development since my youngest has had similar issues, including horrible reflux, milk protein allergy and feeding problems.

We did A LOT of therapy- physical, occupational, speech and special instruction. We went through EI and it was provided by the gov. free (regardless of income, woohoo!). We also did private therapy for PT & OT. Graham never held a bottle, in fact, he was 13 months old before he could hold a sip cup, and then had to have a straw cup because he couldn't tolerate a sip cup. His 2 OTs did his feeding therapy and both diagnosed him with a sensory processing disorder & hypotonia that was related to bleeds he had had from hemophilia. He couldn't walk because he couldn't stand the feel of the ground (any ground) on his feet so we put rigid shoes on him to reduce what he could feel and he started to progress. His feeding therapy specifically lasted about 5 months (2x/wk for 3 months then 1x/wk for the rest of the time) during which time he outgrew his milk allergy (woohoo!), came off of his huge twice daily doses of prevacid, was able to stop seeing his GI, and learned to use a sippy as well as a straw cup. We also taught him to use a spoon and tolerate textures & temperatures in his mouth. 2 really important tools for us were a nook (looks like a rubber pinecone on a rubber handle) that we used to tone his muscles, reduce drooling and build texture tolerance, and an electric toothbrush which helped with the same things but increased stimulation.

I remember feeling overwhelmed and worried that he would never be like other kids while going through all of it, but there is a light at the end of the tunnel! While I am typing this he is RUNNING through the house with his lawn mower giggling and saying "go, go!", and has only stopped once- to go to the fridge and say, "Mama, milk please!" then get his own SIP cup out of the fridge and walk around drinking it. And he's only 17 months old. Yep, I'm proud, hehe. He isn't exactly a "normal" kid- he's advanced saying over 50 words, complete sentences and testing above avg. on all of his evals. He's kicking a ball right now and saying "Score!". I never thought he'd do something like that. Hang in there and your boys will get there, too! Good luck!

 

I hope you get some answers soon. I am glad that the tests confirmed what you were thinking but I am sorry that they did not have a definitive cause for you. The pictures of your boys are adorable :wub:

 

Any news yet?

 

not on the labs but i did post an update it's called "river and alexander update"...sorry don't have the link but it tells everything about our stay and how the boys' did.

wednesday we'll have the labs, hopefully.

 

I hope you get some answers soon.