God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family.

Friday, September 2, 2011

Angels & Demons

The title kinda gives away this post....the good and the bad. Spina Bifida isn't a cut and dry diagnosis. No two people are affected the same. At any given moment something can go wrong. For the most part, everything with Brenden has been very manageable. Except that one, small, yet so very big thing. This stupid cyst on his spine. While it hasn't grown in at least 2 years, it's still there, with the possibility of causing damage at any given second. You faithful followers remember that in May of 2010, Brenden had a two part surgery to hopefully get rid of the cyst, however it was unsuccessful. The surgery was successful however, at creating yet one more problem....another "demon" that could rear it's head at any given moment. The laminectomy (shaving micro-millimeters from a few vertabrae) caused some instability in his cervical spine, right around the area that controls arm/hand function.

There has been no change in the instability, no problems, no side effects. Until now (we think), which will be confirmed on September 12th. Brenden has developed a *slight* , and I mean very slight, like no one else would have noticed it had I not pointed it out, shaking in his arms/hands. It's only when he has them mid-air, like to take a drink or when he's eating. I tried to convince myself I was imagining it....at first I sat staring at him while he was eating to be certain what I saw. Brenden is scheduled for x-rays and a follow up with Dr. Jane, the neurosurgeon. I also have a slight feeling he will also want to move the MRI up, which is currently scheduled for March, to get a look at the cyst. (I'm no doctor, but that's what I think will happen) Dr. Jane has been very honest that he really is torn with what to do as far as treating the cyst and the instability. He's admitted that he's never really seen this, but he has one of the top rated spine specialists review the x-rays to monitor the instability. My stomach is in knots just typing this because my mommy instincts say we'll be headed into the OR soon.....but I'm praying for a miracle, which I know is possible :)

Brenden continues to really struggle with fine motor skills, which is most likely attributed to all this going on in his cervical and thoracic spine. I won't go into my discontent with the OT he receives at school, however we've been on the waiting list to get in for outpatient OT in Winchester. His name finally made it's way to the top of the list, so we went this past Wednesday for the eval. Once insurance approval goes through we will see her once a week. I really, really like her, as does Brenden....he saw her for about a year when he was younger, so it was nice for her to see how much progress he's made since then.

On to happier things....Madelynn is finally sleeping in her bed. Much to our surprise she lays down and goes right to sleep. Once the crib came down, she didn't even give it a second thought. Now, if only potty training were going so well.....

Brenden is enjoying school. I'm told that he's everybody's favorite. He's usually the first one in each morning but the other kids start filing in as I'm leaving and the all say "Hey Brenden," when the enter the room. ALL the parents that drop off know his name and talk to him each morning, too. I'm still butting heads with the PT he sees at school but I'm not backing down. His teachers don't even agree with her, so it will be interesting to see how the year plays out. Marathon training continues to go as planned....cooler temps have made it so much easier! Allergies are becoming a battle during my runs. I'm also probably headed back to the doctor to have my leg/knee checked out....I'm not really sure what's going on but I'm having some problems so hopefully he can figure out what's going on. In my mind I have my hypothesis, but again, I don't have an M.D. after my name, so I'll leave it to the expert :)


"The Popham's" said...

Prayers!!! Love you

Uncle Larry/Aunt Barb said...

I use to think every month there is something different going on with Jennifer. I have changed my thoughts. Changes can come around in a minute. We still hold on to our faith just as we know you all do too. Always in our thoughts & prayers

indonesiatooverseas said...

I hope Brenden will ne OK soon.