Saturday, June 16, 2007

When Will This Ride End?

Seeing these people stuck upside down on this roller coaster recently is how I have felt this past week. It is bad enough to get stuck on a ride for 30 minutes, but to be upside down???? They were rescued in 30 minutes.
MM has had a scratch on her ankle that didn't heal. It has gotten really nasty looking and the doc just wants to continue to watch it. In addition, she has had elevated glucose levels. They had to take several tubes of blood this week to check her glucose as well as looking for something autoimmune. They can't figure out why she isn't healing well. It is very worrisome. Did I mention her ear tubes aren't working anymore? They appear to be dislodged or have fallen out altogether. Add going back to the ENT doc to the list of things to do.

We also saw the eye doc this week. She more than likely needs surgery, but we are going to try one last ditch effort for 10 weeks. We are now going to be adding bifocals to her glasses and see if it helps her crossing. I am trying to hold out on surgery as long as possible without causing her any danger. I just hate putting her under more anesthesia.

We also saw a new PT this week. I think I am going to love her. She seemed to be on top of things. She thinks we need new DAFOs (braces) that are taller since she has had quite the growth spurt recently. She was afraid to tell us where she is gross motor wise- she didn't have to tell me, I knew. Around the 24 month level- no big surprise to me. Yes, she is 50 months old- (hee hee 4 years 2 months), so she is far behind. AND the school says she only needs PT 1x/month for 30 minutes... WHATEVER!
It has been so hectic & busy... Throw working 4 12 hours shifts in the last 6 days into the mix & I am exhausted!

The constant appointments, the ups & downs of having a child with medical issues feels like a roller coaster. When you have a time where you don't seem to have much good news is just like being stuck on the ride. When it keeps getting worse, it is like being stuck & hanging upside down. Only thing is, when you are on this ride, there isn't anyone coming to rescue you. You have to wait it out, fix it yourself, or hope the ride gets going again.

1 comment:

Amanda said...

I love this post. I have a special needs daughter of my own with Cornelia De Lange Syndrome that comes with its own autistic like behaviors. I also work with a little girl that had hydrocephalus at 3 months of age due to other medical issues and is very autistic among other severe disabilities.
So I have been doing a search all day looking for a specific article that I had read a couple years ago. I came upon your blog by chance. Thing is there are several people in my life that have been "short bus" joking and I am pretty done with it. This article that I am looking for was written by a mom that addressed these jokes and did so very eliquently. It was passed on through email and I have lost it over time. Just wondering if you are familiar with the article and might have it or can link me to it?
If so could you email me at
thanks so much.
This last paragraph of this post really hit home. Thanks for having the courage to put your heart and soul out there to share and support.