Tuesday, October 7, 2008

Fear of the Unknown

We have had the seizures kick back up again. We are going to have to increase the meds again tomorrow. More clusters and more cp seizures. One CP at lunch, one CP before we left for dinner. One cluster in the car while we were driving to the breast cancer fund raiser. My friend is doing the SGK 3-Day Walk, so she had her birthday dinner at a restaurant that was willing to donate a portion of the proceeds to breast cancer. Another small cluster at the restaurant. It seems like they are slowly ramping up.

I called Dr. Neuro's assistant and called the dietician to schedule an appointment so we can begin the Ketogenic diet soon. We should have an appointment set up by the time we hit our max dose of Topamax, I hope!

We are still scheduled to see Dr. Genes at the end of the month and still scheduled for a repeat vEEG at the beginning of next month.

We had PT today with a substitute therapist. Ms. Bonnie is taking some time off. I was picking her brain about Kaylee's flaccid muscles. She isn't sure why her muscles are not developing much given her level of activity. She's making progress with her abilities, but she said she doesn't have enough leg muscle tone or hip strength to support her own weight with out assistance. Hence why she is not standing on her own or walking unassisted. She doesn't have the muscle tone to balance her weight. I am getting nervous about her tone not improving much. We work with her so much at home. I'm not impatient for her to walk, I just hate playing the waiting game to try and figure out if there is some other underlying problem. I know they don't have a crystal ball to tell me whether or not she will walk well unassisted, but when ever I say "maybe she'll be walking by Christmas" they say "that seems like a reasonable goal". It's not the confidence they had when we went for our first few sessions that she wouldn't be needing therapy for long with the progress she made in the beginning.

I hate and fear the unknown. I am more confident that I can deal with emotional blows, but it's the wait and see stuff that sends me. I want to know one way or the other. I guess all we can do is hope. I know that's all anyone can do for their child. Everyone has hopes and dreams for their child, but they are a little different when you have kids with special needs. Most people dream of their child going to college, having a good career, having a family, owning a home of their own. For us, we dream of the things many people take for granted. Performing self care tasks independently (dressing, showering, preparing food), be completely potty trained, tie shoes, follow directions, communicate well, make friends, walk, run, play a team sport effectively, ride a tricycle or a two wheeled bike, read at grade level, use money, etc. All these things that you almost anticipate as an automatic is a challenge for my children. Some of these things may never be mastered.

I just ache sometimes knowing what a challenge everything is for them. How must they feel waking up every morning and willing themselves to get up and face all their challenges head on each and every day. I can see how life can be so frustrating. Sometimes it's easier to throw a tantrum than to have to deal with one more thing!!!

So here's to our brave children who get up every day and face their fears in this wobbly old world every day. They are a lot braver than I am!


JSmith5780 said...

Hugs, hoping today is a better day. We all get those days where we focus too much on the futrue and not the now. No one can say how far any of our kids will go, we just have to believe in them that they can get there!

baby trevor's mommy said...

Shanna...you captured so many of my own thoughts in this post. The fears & dreams we have for our children are different because of their special needs. No doubt. And some days it sucks. The unknown KILLS me. I like stability & control. Some days I'm just sick of being exhausted...and I don't have the energy to fight or find the courage. But I love how your thoughts went full circle back to how amazing our kids are. Truly amazing! And so are you sweetie! But it's okay to be tired sometimes. xoxoxoxo

~Mama Skates~ said...

amen to that! i can't wait for jaden to learn to tie his darn shoes!!! ~lol~ sending hugs, prayers & warm thoughts ur way....hoping u get some answers soon!