I was pretty impressed with this new Doctor, and am going to switch care to her, she is a GI through our children's hospital. So we meet with the surgeon 9/26 who has also done James' surgeries in the past while he was in the NICU so some comfort there. The past two days have been pretty tough for me, but the more I think about it and the benefit to James, the better I understand the importance. So I will let you all know as I do with what is going on. Any words of encouragement are greatly needed. I guess it is good we do it now since he already does have the oral eating down just does not eat enough. Any how, they are also going to set us up for intense feeding therapy through children's hospital, after the surgery to help us try and progress more with his oral feeds. He does not have any severe oral aversions, just with his reflux and dysphagia which causes him to only eat the minimum.
Now on to some fun stuff. Today we painted Oh what fun we had. Here are also some pictures from last Sunday FOOTBALL!! ANYONE!!!
Yes my husband is a huge STEELERS fan so much so one of our spare bedrooms is painted with black and gold steeler colors. Pretty oh so pretty!
Talk to you soon.
Talk to you soon.
8 comments:
I'm sorry about the feeding tube. I hope it makes a big difference to James' growing. We were told to get one too, but we just skipped the tube and went straight to the intensive feeding therapy. After only a week (of 4x a day therapy) Noah was growing like a champ. We only go once a week now (instead of the 20x we did the first 2 months) but we're still making good progress. Good luck!
Oh I wish you would reconsider this!! It is NOT a fix all to reflux and growth!!! Why not try the intensive feeding first?? I mean he looks very healthy and that is what you should be looking at instead of his actual weight or what he is eating.
It never even occured to me that they could have a feeding tube at a later age!!! I wish you all well and we'll be thinking of you!
we went the feeding tube route and i never regretted it, not when i saw the dramatic change in my son. it was hard work getting him off the tube but again i have no regrets. i believe we as parents of our own children need to follow our hearts as we make informed decisions over what is best for our child and our child alone. good luck you guys.
~a hard core Steeler fan and former Pgh girl.
so many decisions to make! i'm glad you feel confident moving forward with the tube. we used one for david until he could go without. it took discipline to get him off of it, but he did great. do whatever works for James and your family! hugs.
Please let me know if there is anything I can do to help. I think you will see HUGE improvements and remember, you can always do the Blenderized Diet!!!!
Just found your blog!! Love reading about James. I fear the feeding tube may be in our future :( I guess we do what we have to, right?
Beautiful boy :)
Jillian
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