Saturday, January 16, 2010

Our BIG excursion...

Izzy, Omie (my mom) and I took a trip to Baltimore, Maryland this week. Baltimore has one of only a few intensive feeding programs for children with severe feeding difficulties in the United States. I had decided several months back that Izzy needed to be evaluated there. However, I kept taking all of the advice from professionals that she will/would outgrow this. Anyway, we went and I am so glad that we did.

Izzy was evaluated by several disciplines. This included a Gastroenterologist, Pediatric Nurse Practitioner, Occupational Therapist, Behavioral Psychologist, Nutritionist and a Speech Therapist. And guess what?!?! She qualifies for their intensive inpatient or day treatment program. Not what I really wanted to hear, but at the same time it was such a HUGE relief to know that I have not been overly concerned (as many would say). It was actually good in a way to here the words, "After we have collaborated we find that Izzy does indeed qualify for our intensive service." It felt so good for my feelings to be validated. It felt so good that I couldn't help but break down and cry right there in front of all of them. Finally, someone didn't shut the door in our face. They didn't send us home for her to "out-grow" this. This kid does not eat and does not drink much at all. Their main concerns were around her low fluid intake, but the were also very concerned about her solid intake. They were actually very surprised that she hasn't dehydrated herself thus far. It seems like she always picks herself up before we get to that point. Oh, AND I got huge praises for working so hard (everyday) to get adequate calories in this kid....her growth has been great despite all our difficulties. They seem to think that her problems are related to sensory processing, which has also turned into some behavioral eating refusal. No big surprise for us.

So, the short of the story is that they have a 6 month waiting list. NOT good timing for us since we plan to move to Germany in April. NOT GOOD AT ALL! We would also need to be placed on a waiting list at the Ronald McDonald House of Baltimore. The need for housing in the summer is HUGE. We just can't afford to pay for housing otherwise. Izzy and I would be there for 6-8 weeks. Thankfully, the Ronald McDonald house offers nightly rates of $15. And it was so nice there! Much nicer than any motel or extended stay suite you could possibly think of staying in.

We'll see what is in the plans for us around this. I am thinking that it may be easier and faster to get into a program in Germany. My only concern there is the language barrier that surrounds me. That is so scarey for me and so stressful. I don't know...all I can do is hope and pray that this will all work out. I do know that I WILL do whatever it takes for this little girl. I love her so much.......

2 comments:

Jenn said...

Hooray for validation... and for a treatment plan! You were so right to keep going until you got a diagnosis that made sense. Love you all!

Boos Family said...

I'm so happy you found the right people to help you guys!! I had the same feeling of relief when Landon's therapist figured him out.