I got Dr. Goker-Alpan’s summary from Hannah’s visit to the NIH.
There was nothing in there that we didn’t already know from our meetings with them. However, I was reading her overview of the suggestions regarding Hannah’s vocal cord paresis, developmental delays, and feeding issues, and I just got overwhelmed. I’m not sure why. All of a sudden it was like I couldn’t process any more information. Meet with pulmonary, ENT, speech pathology, have them work with NIH’s OT/PT and speech pathology, many more therapies, etc… I couldn’t tell which way to go first!
Some other moms have recommended part-time therapy day-care centers as a suggestion for Hannah, which would not only work with the therapy issues but the socialization as well. However, Houston has no Easter Seals program, and ECI doesn’t seem to have a therapy work center either. So I’m not sure what options, if any, we have here.
I take comfort in the fact that they recommend all these additional therapies because they feel very positively that Hannah would be receptive at this point to them. Hannah needs a lot of help, a lot. But they believe she will get there if we get the appropriate therapy routines. I’m just not sure how the heck I am going to be able to do them all — or how SHE will be able to do them all. I admit…I need help now. I asked Dr. B., our pediatrician, for his assistance in getting everything in order.
I have never felt like this. I have always been right on top of things, many times before I was officially told. But for whatever reason, I feel like my brain is turning to mush this week.
Ironically, we meet with Dr. Schiffmann tomorrow up in Dallas for our 6-month review. It will be very interesting to hear his thoughts on our NIH findings as well (which I will share tomorrow after the meeting!)
don’t be so hard on yourself, will you, you’re doing great and are on top of things..
I don’t know if the advice to take one day at a time holds any credence in this situation….but I really think that’s all you can do. Tackle each suggestion/specialist/therapist/schedule conflict as it comes. You will figure out how to manage this, just as you’ve figured out all the rest. HUG!
ECI doesn’t have a center with integrated therapies as well as a daycare/preschool? Have you checked directly with your local Board of MRDD?
It’s hard enough to be the mother of a one year old…and you seem to be doing a great job with all three kids.
I agree with Mel that I’m surprised that ECI does not have a center with integrated therapies. A list of other places that I have worked for that have center based EI is: college/universities, local boards of MRDD, UCP (United Cerebral Palsy, which I think has changed it name to something I don’t remember… they serve kids that don’t have CP as well), JCC, major learning children’s hospitals, blind/deaf organizations (that are for both kids and adults), and local school systems. Where do people with kids with disabilities send their kids to preschool? I’m guessing that not all of them send them to a “typical” preschool, and most times if they have a preschool program, they have a babies program. And if they offer any type of program they almost always include the therapies. I think I’ve read that others have volunteered to help you, maybe this could be a task that you delegate, not to choose a EI center, but to FIND them. I would be pretty shocked if there is not some option.
You are doing great. Just one step, one day at a time (and if that is too much, one hour at a time).
Hugs
just think of it as your new full time job. It will get easier with the other kids back at school and you will find your rythm once you have the routine set up. We all have faith in you!!!
It’s understanding that you would be overwhelmed, but you are a strong person. Take your moment and then I know you’ll continue on and do what needs to be done.
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I think there just comes times when we can’t handle any more. We don’t want any more “bad” news, no more things we have to do, coordinate, follow-up on. The amount of work we have before us is amazing and there are many times I think doctors just truly know what we go through day to day. they know, but they don’t’ *know*.
Hang in there. You’re doing great. You just need a minute to breathe.
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