Our journey through life with hemiplegic cerebral palsy and infantile spasms

Wednesday, June 6, 2012

some went good... others, not so much

I'm so glad yesterday is over. Cramming three appointments in one day is exhausting and we only had one child that day! I'm so thankful Karter didn't have to go, he would have been miserable. The first appointment went better than we expected. The urologist said only one testicle hasn't dropped (much better than both) and there's still a chance it can happen on its own. He wants to wait out another month and take it from there. Kuper and I were shocked, for once we got fairly good news! Next stop; neurologist. I was in such a good mood from the first appointment I wasn't prepared for the neuro at all. When we got there we talked about our plan of action with Karsen's medications. She stepped out for a little bit to talk to an epilepsy specialist. During that time Karsen had the longest seizures he's ever had, and of course the whole time she was gone. It went on for almost 20 minutes. Kuper and my feelings of good were quickly washed away. His neuro then told us our options, we have decided to are start him on prednisone, with his current seizure drug (and zantac for his tummy). If this doesn't work, then we'll try one more drug. She didn't feel very confident the prednisone would work. If those two both fail, then we will need to seriously discuss surgery. What?! On my babies brain?! I was completely caught off guard. I didn't think we would ever need to come to this. My stomach dropped and I instantly felt like I was going to throw up. I'm so very happy with Karsen's neuro, she's very informative, takes her time with us, and always shoots us straight. I just didn't prepare myself this time. A month from now we have another appointment with the urologist and the neurologist to follow up on both. We'll move forward from there. Third stop; lab work. Feeling absolutely sick to my stomach from the neuro appointment, I started getting more nervous for just a simple blood draw. Blood draw is nothing compared to the MRI but still someone was going to be hurting my baby. Hadn't he been put through enough today? Heck, hadn't Kuper and I been through enough today? After all the appointments were done, we headed out to the car and began our drive back home. We decided to stop and get dinner before we got back home and that's when I lost it. Started crying in the middle of the restaurant. With a shoulder to cry on a a happy, chatty baby, I quickly pulled myself together. This is just another bump in the road, we will pull through this. Things will get better.
Thought'd I'd wrap this up with a video of our little man at dinner yesterday, cheering me up. Enjoy! (notice who's sitting in a high chair finally!)


3 comments:

  1. He is so adorable Jaimie! Thanks for the updates and I think I am finally officially "following" you. I don't know why I had such a hard time connecting here! User error, I am sure. lol

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  2. I love that little nephew of mine! He always has a smile and so much to say. I am confident that regardless of what happens next, he will come out of it stronger! Karsen is such a fighter!

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  3. Finally got internet and got to catch up...praying for you friend! You are the perfectly chosen mom for him (and big bro) and God is far from finished with this story. Love you. AND - the open mouthed kisses in the video are the BEST.

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