Sophie
Ladies First, so we'll talk about Sophie first. Sophie is doing really well, a happy fourth grader. I am hopeful that she won't have any symptoms having to do with her Histiocytosis EVER, and the doctor has cleared her to wait 'til November to see him at the Cancer Center, which is a HUGE BLESSING! Because of the delay in needing scans, we went ahead and travelled over to the Merle Norman store and got her ears pierced! She's a big girl now and I think this was a real coming of age moment for her. She's not a "little girl" anymore, even though she will always be my precious little girl. I am so excited for the girl she is and the woman she is becoming. Amazing to watch!
Ladies First, so we'll talk about Sophie first. Sophie is doing really well, a happy fourth grader. I am hopeful that she won't have any symptoms having to do with her Histiocytosis EVER, and the doctor has cleared her to wait 'til November to see him at the Cancer Center, which is a HUGE BLESSING! Because of the delay in needing scans, we went ahead and travelled over to the Merle Norman store and got her ears pierced! She's a big girl now and I think this was a real coming of age moment for her. She's not a "little girl" anymore, even though she will always be my precious little girl. I am so excited for the girl she is and the woman she is becoming. Amazing to watch!
Aiden
Aiden is having more struggles than normal lately, however. It's upsetting to me to talk about, because he's been through so much. He's such a remarkable survivor. I never thought I'd be sitting her writing about Aiden. After all, I didn't expect him to make it out of the NICU after 32 days being born at 30.5 weeks with too many apneas and bradycardias to count as well as a level III IVH... much less, make it to two years, four months old! But... back to my point, he is currently having struggles with seizures and his Cerebral Palsy. He appears to have a greater degree of weakness in his lower extremities than we had originally suspected and is continuing to sit in a "W" posture, like a baby in lieu of "criss cross" like most kids are able to do at his age. He is also having no right or left handedness and is struggling with gross and fine motor skills especially on his right side. Thankfully, the ECI people are getting involved again and have recommended him for physical and occupational therapy. This is a great intervention and helped him immensely when he was enrolled when he was 6 months old.
Aiden is having more struggles than normal lately, however. It's upsetting to me to talk about, because he's been through so much. He's such a remarkable survivor. I never thought I'd be sitting her writing about Aiden. After all, I didn't expect him to make it out of the NICU after 32 days being born at 30.5 weeks with too many apneas and bradycardias to count as well as a level III IVH... much less, make it to two years, four months old! But... back to my point, he is currently having struggles with seizures and his Cerebral Palsy. He appears to have a greater degree of weakness in his lower extremities than we had originally suspected and is continuing to sit in a "W" posture, like a baby in lieu of "criss cross" like most kids are able to do at his age. He is also having no right or left handedness and is struggling with gross and fine motor skills especially on his right side. Thankfully, the ECI people are getting involved again and have recommended him for physical and occupational therapy. This is a great intervention and helped him immensely when he was enrolled when he was 6 months old.
And, last night he had a seizure again. It's so hard to deal with, especially right now considering I can't lift him because I am only three weeks out from having the back surgery. It was about 10:45 when I was getting ready for bed and I heard this rustling and whimpering coming from his room. He then started SCREAMING bloody murder from his crib. I walked in to find him on his back (he's a tummy sleeper) and he was all spread eagle which is the position is is usually in after a seizure. He always has this kind of powerful reaction after a seizure. Sophie even woke up, jumped out of bed, and helped me by carrying her screaming little brother into my room. I got him a warm wash cloth and laid down next to him and attempted to wipe his face and head and calm him. But, at that point, he was still screaming for Nanny. I called her and let her know she needed to come because I thought more seizures were eminent. For a few moments before she arrived, Aiden calmed down a little bit because we were able to FaceTime with Adam (aka. The Amazing Mr. P). Once mom arrived, he was really foggy looking, just staring off into space once he calmed down, for what seemed like forever. He just laid there with his eyes open in a daze. Eventually, he fell asleep, but I think the whole thing just freaked him out. He's getting to the point where he is able to formulate more thoughts and put together sentences so I can only imagine he was thinking, "what the HECK just happened to me?". Obviously he doesn't remember what happened before... Babies just don't remember that far back.
Once Aiden was back in his bed, I went in to check on Sophie who had, understandably, migrated back to her room. She was still awake (barely) and I told her how amazing she was and how I hated that she had to help, but was so thankful that she had been there to lift Aiden last night. Again this morning, I praised her efforts and quick thinking because she knew what had happened. She heard and seen the whole thing. I just hate that she had to be so close to this, it scared her to death, but some instinct kicked in and she just did what she needed to do to help him. It was an incredible sight to see.
It's days like this, tired, and hurting when I am so thankful for my fiance. He was so soothing to Aiden last night. He said one word and Aiden looked at the screen and instantly just calmed down. I really don't think Adam knows just how much this meant to me. He's such an amazing dad. I cried like a baby when it was all over. I just curled up and laid in my bed, powerless to hold or console Aiden, and I just felt completely incompetent. I went into the living room about an hour or so after my mom took Aiden, and saw them cuddled up on the couch. Yet, Aiden still laid there with eyes like saucers. I then suggested that mom lay Aiden back down.in his crib so maybe he would calm down the rest of the way and sleep.
Me
As far as I am concerned, other than having a few new gray hairs because I have had to rest so much and can't tend to my kids like I would like, I do get stronger each day. I am working full days now, but have to lay down after each work day and I also have to walk quite a bit during the day so I don't get too stiff. I am really ready to go home and lay down at the end of the day, but I am enormously thankful to be back at work. The routine and the challenges of the work day really help.
We are contemplating looking into a service animal for Aiden. I want to collect information and see if this would be a good idea to help recognize when Aiden is about to have a seizure.
After what happened, I realize several things about my life. I am happy in spite of having some rough days mixed in sometimes. Everyone has those. My kids are phenomenal little miracles and I am so blessed to have the family that surrounds me and the love that is around to support us and keep us sane. I am most thankful also, for the love of Christ, without whom I don't know sometimes how I'd get through this. Just remember, when you give your life over to Him, He doesn't guarantee that things won't be awful sometimes, He just guarantees you won't ever be alone.
I don't want to slam anyone over the head with the God thing, but it's so true and it's truly changed EVERYTHING. I have a comfort and strength about me that I haven't ever had before. That's all because of God. I just know that even if he doesn't deliver us from our struggles and we have to endure CP, Epilepsy and Histiocytosis for the rest of our lives, at least we will be surrounded by the love of Christ. And, at least I have two beautiful children to share these moments with. I am blessed to have one more day to tend to a seizure, to wipe away someone's tears or be by their bedside if they need chemo one day. I am thankful, humbled and thankful.
Have a great day friends,
J
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