F/U: Feeding Clinic Evaluation

lstaylor73

Thanks to everyone for your well wishes!

It was a mixed experience but I think over all I feel good about it.  It started off with me being a little late (vomit fest/last minute diaper blowout/forgetting stuff to take with us), getting super lost and becoming horribly late, getting really frustrated at dealing with the medical system, getting lost in an old hospital with tiny elevators that don't fit my monster stroller, and the treatment room being hot as an oven.  Because we were so late they only had time to evaluate Cameron but since he's the "better off" of the two in most ways they have a good idea of what needs to be done.  We'll have to go back maybe next week for the 2nd evaluation for Evan.  They've agreed we need their services once a week for both boys, it's now just a matter of finding place in their scheduling.

They are already aluding to sensory disorder/overstimulation issues with both, more for Evan and that really has me worried but this should get the ball rolling.  

Unfortunately the boys stranger danger is on high with these ladies who will be their ST and OT (in addition to the OT and PT from Infants & Toddlers) and it will be a very slllloooooooowwwww process to get this all to work for us.  I've always been told I'm a very patient person but I'm at my wits end and really wondering if this will get any better. 

Sweater - No I didn't have a ton of paperwork to fill out but as usual they never sent me the info they did need filled out in advance per my begging request.  I hate to do this crap in duplicate over and over every time we go someplace.  It's a royal pain in the arse and the least they can do is mail it to me in advance with proper driving directions. Ugh!  Anyway, there are still hoops to jump through with insurance and scheduling and stuff.  They don't seem to have much to say about the heaving issue which is now getting worse.  But they did say that some of the gagging issue may be treated with the overall sensory therapy they will be doing.  

I had to bring with me all the different foods that they can eat and one item they've never had before but we never even opened the stuff because Cameron was in such a state that he wouldn't calm down when I tried to feed him his bananas.  Plus they were over tired because we were there well into nap time.  Once we have a set schedule coordinated things should get better.  I hope.

sweater

Well I got exhausted reading your first paragraph - oh my god...how frustrating!!

I'm so interested in the sensory disorder - that sounds on track with the gag/heave/vomit reflex. OMG...I can't wait to have some sort of interview and tell you all about it. I'm so glad we can be advocates for eachother and have other hospitals/therapists ideas then.

Yes...I had many pages to fill out. A 3-day diet diary (obviously that was easy), an entire psych evaluation of me and the home...it was all intense stuff. We'll see what comes of it all...and it better not take 4 freakin months.

all in all, your exprience sounds hopeful to me...nice to know other people recognize your boys need this help, isn't it? With what our boys go thru - there HAS to be ?a system in place to get them back. My fingers and toes are sooo crossed.

ARe the boys gaining nicely on the GJ tubes? I remember that was one of the biggest reasons for it.?

lstaylor73

Yes, they are gaining quite well, though Evan not as fast as he was.  He seems to have slowed down this week despite the fact that we increased his volume on Monday. Yesterday he was 14lbs 7oz and Cameron is 17lbs.  They're getting so heavy and you can really see their coloring is much better.

I sent you an email asking questions about Jax's botox and the heaving issue, but I can't see your reply.  I checked my spam box but there was nothing there so I'm not sure if you saw the email.  If not let me know and I'll try to re send it to you.  

It sounds like you're program may be more thorough than ours, but either way at least we have each other to bounce this stuff off of.  You were the one who helped me with getting the idea for the ferrel bags, and while they haven't fixed the heaving problem it is helping.  

I was also wondering what you dress Jax in most of the time?  The boys are out growing their 9mos cloths and almost NO 12 mos clothes are made with snaps.  They're all two pieces (easier for them to grab and pull their tubes) or zippers which don't work.  I'm hunting for more snaps but don't know that I'll find more once they are larger than 12mos.  And I stopped putting them in regular big boy outfits because it's so difficult to work around the tubes until they're not interested in tugging on them.  I am still not sure that Evan hasn't pulled his tube too much because it sometimes sticks out about an inch or more and that freaks me out every time I see it.  Does Jax's stick out far or is it too soon to tell if it's moving?

sweater

OMG - I replied a huge long email back! I just looked in my "'sent" folder and can't find it...that means I hit inbox instead of send...i do that sometimes by accident - dammit!!

clothes - I'm going to have a lot of those button down one piece rompers for Jax for summer time - they're mainly shorts. Also looking for button down short sleeved onsies to pair with shorts/pants. I found a cute lot of the rompers on craigslist and will be looking in the stores.

Lets both keep our eyes open and let eachother know of any good finds at major stores to give eachother ideas. I have a lot of hand-me-downs in size 12mo - but will only work for Brady, so I need to figure it out too.?