Boom!

Can't believe it has been this long since I blogged! Yes the Blogging is therapeutic but I guess I must be having a good week cause I had not much to say. The last week or so Luke has been sleeping to nearly 8 am. I can't even begin to tell you what that feels like for the past 3 yrs we have not only had to fight the seizure monster but the sleep monster was attacking too. There were nights were Luke was literally awake 20 hrs straight some days just crying. I look at the episodes now and still can't tell you what they were only that he would literally scream as loud as he could like he was in pain and nothing would make him feel better. Some nights he would tug at his ears and head like he was going to rip off his ears. Just 3 weeks ago after so much frustration I drove him to the ER it was around 5 am when we got there. Of course same thing we always heard his systems were all normal, no cough, wheeze, ears were clear etc. We were discharged that particular day at about 11am only to arrive via ambulance after Luke's very first "atonic" seizure. At least that's what the neuro called it- it was pretty much an episode of complete limpness and he was turning blue. I had decided since I had never saw him lose muscle tone completely and he was having trouble breathing that I would not give him his Diastat what we use to stop his seizures. I panicked this time like I was watching him for the first time. Many of his doctors were called when we were in the ER because he had just undergo some med changes. 3 doctors came back with suggestions on what they thought we should do with his meds, one thought an increase was in order another a decrease. I left feeling very confused. The next morning I took a stand and called the neuro and convinced him to allow me to make a change I have wanted to to which was wean him off one of his seizure meds. Because Luke was having so many seizures he was hesitant but I persisted. The nurse told me, "so you want to experiment." I said, "if that's what you want to call it then yes!" Just like all the other fights I won! Big surprise and within a few weeks Luke has been sleeping almost through the night (we are down to one brief awake period at around 3:30 am). He is having some smaller seizure activity and I hate to say it is a price I will pay right now. But having him well rested and happy after a good nights rest seemed so much better than awake almost all night screaming some nights hrs on end. The seizures are not lasting long and most involve just some limb shaking instead of a full generalized seizure. Clarabelle even alerts to these episodes. She is truly an amazing gift. In the last few weeks i swear Luke has also been adding many new words to his vocabulary. he likes sing songy words with the same consonant sound like bubble, purple. The 2 words he says most often are of course his 2 favorite things "mama" and "ball!" I wish he would gain the "d" sound back. "Dada" was actually his first word that he lost when the seizures started. Steve tries to get him to say it all the time. He mimics "Gaga" instead. But his newest word has been like music to my ears- "Boom!" I don't even know why I love it so much it is just the cutest little "Boom!" I think I am most proud because it has a "b" sound in the beginning of the word and a "m" sound at the end. It is so cute - tonight as i was getting ready to go to bed I just had the hugest smile on my face just thinking about his new "boom!" When he says "Boom" you must jump and down and say "Boom!" with him. Sometimes he tries so hard to form his lips to get his "boom!" out it looks painful! When I lay him down to bed I must say "Boom!" When I zip him in I say "boom" (Yes I said zip doesn't everyone zip their kids in their beds!) I was negative I guess but I didn't have much hope Luke would be verbal ever. But lately hearing his many new words even if they are just onomatopoeia is music to my ears!