"Roid Rage"

Now I know why they call it that. "Rage" is definitely a word I would use to describe Dominic the past several days. I'm starting to lose it after 5 consecutive nights of little to no sleep. I really don't know if I can do this another 3-4 weeks. Dominic has continued to get crankier and hungrier. I honestly do not understand how this kid functions without sleep. We finally let him cry for about an hour at 3:30 in the  morning, thinking he had to be overtired and hoped he would eventually fall asleep. After an hour of constant crying, I gave up and sat on the couch with him and nursed him. But all of this lack of sleep is starting to catch up to me. Mike is doing the best he can and always offers to hold him or give him a bottle, even in the middle of the night. But that's not what he wants. So, no rest for the weary. Even Dr. Arndt told us to invest in some headphones :o) However, we are blessed to have my mom here for a few days to help out. She was sweet enough to stay up with Dominic until 2am last night to give Mike and I some much needed rest. She has also given Mitchell the attention he is looking for.

While I'm on the subject, I want to give a shout out to all the friends and family who have helped us out. Mitchell has been spoiled by getting to see both his grandparents a lot over the past several weeks, as well as his buddy Ben. Ben's mom Katie has been such a blessing as she has a new baby  herself, but always takes Mitchell during doctor visits. Mitchell is in for a huge treat next week when he goes to stay with his Aunt Mary and cousins for a few days while I take Dominic to several doctors appointments, an EEG and diagnostic hearing test. There are so many others to thank, it could take all day. But to everyone who has made a meal, sent a card, watched Mitchell, made a phone call or just said a prayer for us -- thank you, from the bottom of our hearts!

Due to all of this eating, Dominic has gained about 2 pounds in the last week! Along with that though, he's having diarrhea all the time since it seems his GI tract is not getting any rest. The Pediatrician is putting him on a probiotic,so, add another med to the list! This poor kid. I had to include a picture though, because he is getting so stinkin' chubby, it's so cute.

Chubby Bunny!

With his "club" feet and hands. 

 

The nurse came this morning and had to draw blood (has has such small veins, she had to warm his hand and feet with diapers filled with hot water to get the blood flowing, hence the picture). His glucose levels were higher, but not at the point they are concerned yet. His blood pressure is still okay and no fever. So, good news there.

The occupational therapist came Monday and hadn't seen him in a few weeks because of our hospital visit. She seemed to think his tone was getting better and that he seemed to be tracking and focusing on things better. So, yeah! We also visited the Opthamologist today and since she first evaluated him (during our first hospital stay) she thinks his vision has improved. He is tracking, responding to light and contrast. So, she said things are looking good. He's probably a little delayed, but all things considered, doing well. He'll need to see her every couple of months because the Vigabatrin can cause permanent peripheral vision loss, she'll need to keep monitoring him. Although, it's pretty hard to check for that in a 3 month old without sedating him. Hopefully he won't have to be on Vigabatrin long-term and it won't be an issue. Wishful thinking :o)

Now for the big news...Dominic has not had one spasm since Sunday night at 7:15 pm. I'm so afraid to  put that in writing because I'm sure I'll jinx myself. But, this is huge. I'm not getting my hopes up, as we had a few spasm-free days on the Vigabatrin at first too. But, it's showing that the ACTH is working so far. It's common though for kids to stop having spasms, and once you wean them off it, relapse. So, again, not out of the woods or even close, but the past few days have been spasm-free, so I'll take it. And if the ACTH works, all the crying, screaming, eating and sleepless nights will be worth it.

A moment of calm with Grandma

My aunt emailed me the other day and told me that the small church they attend when they go to their cabin, which isn't regularly, had Dominic listed on their prayer list. She had only mentioned it once and was surprised that he was in the bulletin and that the congregation was praying for him. She asked me if I ever thought that God might actually be working through my little guy to witness for Him? I pondered that for a moment and thought to myself, "absolutely". I do not believe God makes bad things happen to people, but that he allows these things to happen to use to draw us closer to Him. I believe He can bring great good out of even the most difficult circumstances and I told my aunt that I do believe He is using Dominic's situation to bring Him glory. Dominic is touching so many people in a way that can take many a lifetime to do, and for that I could not be more proud of him or more honored to be his mother.