Keppra seems to have a terrible hold on Kenny. He has meltdowns every day! These meltdowns are just horrible. Nothing triggers it/nothing helps it. He doesn't want to be held, but doesn't want to be put down...the headbanging had gotten out of hand with these fits as well! I HATE what has been dealt to our little Kenny! He has lost the glimmer of love and innocents in his eyes...he looks tired, upset and just irritated by everything. Light seems to bother him more than ever. He is up all night long either drinking his bottle (goes through about 4, 4 0z bottles a night) or crying. I feel so bad for him. He doesn't sleep at night...which in turn, keeps Gina up because she sleeps in our room with us and Kenny. So Tony and I don't sleep at night. We are in a no win situation...if he doesnt take it, he will get seizures, but then, while on it, his meltdowns are heartbreaking! Oh yeah...this has turned into a nightmare!
See...you can kind of see the look in his eyes in this picture...
I also feel bad for my other kids because we are not able to spend time with them playing with them, doing things with them, because of Kenny. It's just a mess. Tony and I are exhausted because of everything going on. I am so afraid for Kenny and everything that is going on with him...the seizures, the lung disease, the hearing loss, the developmental delays....etc...I just want things to be good for a little boy that has been through so much in his 2 1/2 years...what will the future hold for him? I want it to be great. I want him to live to a ripe old age. I want him to have a very happy, successful, fulfilling, wonderful life...just like I want for all my kids...I want him to be normal!!!!
I want my other kids to not hate us and understand that we are not ignoring them...or not able to do things like a normal family can because of the circumstances. We want to go places with them. Do fun stuff with them. Have sleepovers with their friends. Spend quality time with them...but its just not that easy...it's almost impossible. Oh how I wish we could be a normal, happy, healthy family...this really stinks!
We do have one Christmas present that Tony and I have gotten...Kenny LOVES to walk.
He is still very unbalanced, but he is all over the house! Still crawls when he wants to get somewhere fast, but he is very proud of walking...oh...and he learned a new sign...the sign for "my turn"! Its AWESOME!
On another note...the house that we wanted...really really bad...the 2500 sq ft. foreclosure...the one that would have been perfect for our large family...the one that I saw us living in, growing old in...the one that we put our house on the market for....as life has it...there is a "sale pending" on it...and its not us that its pending for! Yeah..great. I have been searching and searching for a house that is that size, not too far away, and something we can get approved for...there is nothing out there for under $250,000 for a 4 bdrm, 2 bath, 2500 sq. ft home. I am sick...now our house is STILL on the market and there is nothing for us to move into! We need a miracle, and need it to happen this year. I just don't know what to say anymore. Its just not that great. Christmas was very low key...which was great...not what we wanted, but what we could afford. I know the kids were a little disappointed, but Santa couldn't go crazy this year. It's not about the gifts anyhow...we were together, as a family...and that's all that mattered!
So I am hoping and praying that good luck and a miracle could make its way to our family...its been a bad 3 years...its got to get better...right?
Here is a pic of our tree Christmas morning...before the kids woke up...The girls decide to color a picture of Santa and the reindeer for Santa...notice the Duck Tape! LOL!!!Merry Christmas to our angel Nick...We miss you!