Friday, August 15, 2008

Another Opinion... and more steps to take

Well, Monday was Joe's 6mos evaluation with First Steps. While we feel that he has made progress he has not achieved any of the goals we set with them when he started the program. We've increased Physical Therapy to twice a week instead of the once that we've been doing - I really love our PT so I'm glad to be working with her more in depth. We'll be continuing with the Developmental therapy once a week. And as soon as an Occupational therapist has an opening in their schedule we'll be adding that too. We've left it open to possibly add speech therapy later if needed. There weren't any real surprises at that meeting, it went about how we thought it would.
I called the developmental pediatric office at Riley yesterday and was able to find out that the results of all the blood tests that were done at our visit in June had all come back normal. We are still waiting for the results of the urine tests.
Today we met with a pediatric neurologist at Riley. We feel better about this appointment than we did about the one with the developmental specialist in June. We did not have to wait forever (I mean, its a doctor's office, of course there was waiting, but much less than last time). She actually seemed to test his abilities for herself instead of only asking us questions about his development. She seems to think that Joe's delays are due to a muscular problem and probably not a neurological problem. She had us schedule an EMG and she does want us to get an MRI also to rule out neurological problems. She also wants genetic blood testing done to see if Joe has Spinal Muscular Atrophy.
We are in the process of trying to get new insurance since what we have now does not cover any major medical expenses at all. Basically, it covers routine doctor visits, the occasional ER visit and thats all. We cannot afford to be paying out of pocket for all these tests and doctor visits to specialists. So, we're shopping for insurance. We plan on following through with the recommended tests after we are able to find some better insurance.


Jana Gundy said...

Wani, my name is Jana and I have a son, Kyle James,who has spinal muscular atrophy. I see that you say Joe is 6 months old? I have a question, When you look at his tongue, does it wiggle around, like a bag of worms? I know, a weird question, but an important one as well. Kyle was diagnosed at 6 weeks of age. My email is:
If you could answer me, that would be great and I love reading blogs from fellow born again believers!

Arby said...

Dear Wani:

The other side of Arby, the guy who writes funny but inappropriate stories in the comments section on other people’s blogs, is that I am the father of a cardiac kid, an amazing little girl we call “Captain Chaos,” who was born with a life-threatening congenital heart defect that almost took her away from my wife and me when she was four months old. The last four years has been a steady stream of medication, physical therapy appointments, occupational therapy appointments, speech therapy appointments, etc. Some days it felt like the therapists had become a part of the family. I saw them more than I saw my parents and my brothers combined.

(The Captain's orthotics have flowers on them.)

Your stories about Joe caught my attention. It’s easier to deal with a child who has a diagnosis than it is to deal with a child without one, even though some of the therapy is the same. I thought the exercise ball therapy treatments were crazy, except that doing those exercises helped our girl learn to eat. (of all things) My middle child proved to be much harder to treat. He had severe communication delays that have been successfully addressed, but we have no idea what caused them. Were they environmental? Were they physical? Emotional? Chemical? We were treating symptoms without a cause. It’s hard work.

I just wanted to take a moment to share a word - I’m someone who has walked a mile in similar shoes. Trust your instincts. Work hard. Be the strongest advocate for Joe that you can possibly be, and don’t worry about stepping on a few toes if you have to. Pray often. Lean on God. Laugh when you can. Cry when you have to.



Wani said...

Thanks for the encouraging comments. Its nice to hear from people who can understand what we're going through. Keep checking back... I'll be posting about the process every step of the way. God has carried us this far, I'm sure He will continue to do so through it all.

Anna-Marie said...

Hi there, we are in the same boat as you, my son goes for his MRI in 2 days.. he is developmentally delayed.. he doesn't walk on his own or talk yet.. he has one sign (more.. as in food) He has a physical therapy once a week, speech therapy, a low-vision therapist.. and a gazillion doctors.. I echo Arby's comments, they are spot on.. it is incredibly hard to know that something is "wrong" but not have a name for it.. especially when talking to other people about your child.. because it inevitably comes up and you have no diagnosis just a bunch of symptoms... stay strong and hold on to your faith, rely on your church community for prayers and support!