Tuesday, March 25, 2008

The Latest on Joe

So, last Friday Joe had a cardiac echo done at Clarian West to check out the murmur that our family doctor had heard. The timing of the appointment wasn't great (the doc's office made the appt. not me) it was right when Joe should have been napping. I ended up having to lay awkwardly on the cold, hard hospital bed with him and nurse him to keep him calm while the nurse/technician held the ultrasound thingy to his tiny little chest. He eventually fell asleep and stayed asleep for the rest of the test. Thankfully the results came back normal - so at least thats one thing we can relax about.
We've met with both the DT and PT once each last week(they are both a once a week thing). Joe has done pretty well. We are encouraged and looking forward to seeing improvement with more therapy.
Both the vision and hearing tests are scheduled for April sometime. And the Riley developmental evaluation is set for June. Everyone I've talked to warned me that it takes a long time to get in to see a neurologist - they are schedules are booked for months. I called the neurologist's office to see if we had to see the Riley developmental specialist before setting an appointment to see them and was told that since there is a department for developmental delays they don't see kids for that reason until they're told that there is a neurological reason for the delays. But the lady that I talked to said if we have our doc schedule an appointment under the guise of it just being a "consult" then we could schedule before seeing the developmental specialist (even with going that route it'd still be August before we'd be able to get in). I left a message for our doc to see if they'd do that for us. Finally after some phone tag and explaining of exactly what I was wanting I got a call back from the doc's office saying that they got us scheduled with the neurologist in August. What frustrates me is that if I hadn't called and bugged people at both offices then we wouldn't have set an appointment with the neurologist until after we met with the developmental specialist in June and by then who knows when we'd have been able to get an appointment!?! Why isn't the medical community more user-friendly?
We're going to our herbalist in a few weeks and we're going to talk to her about possible supplements and diet to help with brain development. She also mentioned having Joe see a chiropractor too. She said she experienced similar delays/problems with her son also, so I am looking forward to talking with her about it more.
The past few months are a blur of telephone calls and appointments and I honestly don't feel like we really know much more about the situation than we did before we started the process. We know that he is delayed. We still haven't found a concrete reason for the delay or if he's going to catch up or not. I am being challenged daily to let go of my worries and fears and trust God's sovereign plan for Joe and for me. But thats easier said than done. We all have certain aspirations for our children. Its hard not knowing what hopes and dreams I'll have to give up and which ones I should hang on to for dear life.

This is a video of the Physical Therapist working with Joe on the exercise ball. He was working so hard, and so cute too!


Elaine A. said...

Thanks for visiting my blog. I will keep your family, especially Joe in my prayers.

My son had to go to PT for a neck issue that he had after he was first born. But I can only imagine what you are going through as you navigate this path. Like I said, I will keep praying.

Nice to meet you and "see" you again soon!

Sadie said...

Hi! Thanks for visiting my blog!!

As far as the neurologist goes...it took us...3 months, I think to get in to see ours. If you can, ask for Dr. DeMyer at Riley. He's VERY old (just to warn you), but VERY good. The Riley Pulm said he was the best. The type that could just look at your child and tell you if it's something major or minor. He's THAT good and I had ultimate faith in him.

Mel's World said...

Oh my goodness, he is so stinkin' cute!!!

Here's what I will tell you about the medical community...you need to be Joe's activist, he needs you to push without being pushy, bitter, or negative. You want to partner with them to get Joe's needs taken care of and always be willing to do whatever it takes to get the appointments you need, medications, etc.

My oldest son was in the hospital for 51 days (in the PICU) and he almost died 3 times while we were there. Was our experience perfect, no, but we took it upon ourselves to PARTNER with his medical team and in the end we ALL worked together to make sure that our son had everything he needed. The medical team respected that and we were able to stand strong and firm (without fear) and also make some new friends in the process.

Praying for you...