Shabby Miss Jenn

Thursday, June 5, 2008


When an online "friend" suggested I start a blog to let my feelings out, I thought it was a wonderful idea. However, with a lot of my wonderful ideas, I let it take a back burner. At the time--which was a few months ago--I had a lot of "stuff" I needed to get off my chest. For those of you who thought I was doing "just fine", I was crumbling on the inside. I think I put on a pretty good show at work and when I was around others. Poor Curtis, though. He took the brunt of my breakdowns. In March, I actually had a full blown breakdown in my own living room amongst neighborhood friends. Needless to say, I think everyone was a bit shocked. I thought getting it out like that would help, but it really didn't. So, even though I still felt awful, I wiped my tears and continued on. It was during this time that I really meant to start this blog. In the midst of all of this, I also began feeling very guilty about shutting so many important friends from back home--aka Virginia and the east coast--out of my life. That began weighing heavily on me. But the thought of sending an email about the past 10-11 months completely overwhelmed me. Finally, I found some time and typed up an email to everyone. Believe it or not, that was just what I needed to release so many emotions. I've attempted to write something of the sort on here, but it just won't come out. My first entry was supposed to lead to multiple chapters about my feelings and such and coming to terms with having a child with cerebral palsy. But right now, I feel GOOD! FANTASTIC in fact! So, instead of recreating something I've already written, I'm just going to attach a copy of that email for anyone who is interested in reading about our last year.

I’ll go ahead and give y’all a very condensed version of our year. You all know Wade’s birth story, so I won’t go into that. Wade started physical therapy in June through ECI—Early Childhood Intervention. It’s a state program that he will be in until age 3. At that time, he will go into the school system. He was getting PT one time a month (not nearly enough). Things seemed to be moving right along, but deep down, I knew we were going to have issues that weren’t really showing quite yet. We just had to wait for him to hit/not hit certain developmental milestones. In October (5 months old) we went to a follow up visit with the neurologist. Dr. Hernandez is an excellent doctor, but didn’t have the best bedside manner. He was the one who told us that Wade would probably be in a wheelchair for the rest of his life. (This was May 26—the day of his first MRI) Well, Wade certainly surprised him at this follow up!! Doc sat back, crossed his arms, and said, “Well, I’m amazed!” Wade’s head still wasn’t completely stable, but he did have a lot of head control, and his legs were very strong. In November, Wade went in for an EEG to see if we could take him off his seizure medication. EEG came back clear and didn’t show any seizure activity of potential activity. So, we were able to start weaning him, and he was completely of Phenobarbital the weekend before Christmas! In December (almost 7 months old) Wade had another MRI. Dr. Hernandez called us with fantastic news. The MRI showed a 70% improvement than the original MRI. I really didn’t know what that meant, but Doc was VERY happy, and that meant a lot to me since he’s not that friendly! In February, Wade had really bad congestion and fever. I fell in love with his nurse practitioner because she seemed really concerned about some of his developmental delays and why he had such a high fever. (Wade’s pediatrician hadn’t shown much interest.) She did every test possible, and couldn’t find the cause. Then, Wade got sick again in March, practically pneumonia, and she ordered a swallow study because Wade spits up all the time and is ALWAYS congested. By this time, Wade had had 3 ear infections and multiple visits for fever. So, at the beginning of April we had the swallow study. That showed he aspirates on thicker liquids—which has surprised everyone—so the fluid/food gets into his lungs and causes him to stay congested. He doesn’t have the muscle tone to suck properly and move the food around in his mouth correctly. Then he has reflux on top of all of that, so he’s constantly spitting up and swallowing that. So now, on top of physical therapy (which has increased to 3x a month), Wade also has occupational therapy 4x a month! The OT will work on his oral motor development. I will probably be placing him in private speech therapy also. Then, on April 22 we went back to the neurologist for a follow-up. Dr. Hernandez was like a different doctor. Very, very nice and he let me cry without rushing me. He promised me that Wade WILL walk one day. He might be 2 years or older, but he will!!!! We also got the “official” diagnosis of cerebral palsy that day. Like I said at the beginning, I knew all along, but having that “label” makes things more real. He also referred Wade to a gastroenterologist for his reflux. Doc was astounded that Wade wasn’t on medication for reflux. (Pediatrician had said as long as I didn’t mind washing clothes, it wasn’t a big deal!!!) He was concerned that all that acid would cause damage. I had never thought about the reflux being caused by the CP (cerebral palsy). He explained that just like the muscles don’t work correctly on the outside of the body, which we can physically see, they don’t work right on the inside either. Makes a lot of sense, huh? So Doc put him on reflux meds which has helped a lot. We went to gastro. on Friday, and he just increased the dosage. Also have to give Wade prune juice for constipation. Since he’s not mobile, he stays pretty constipated.

So, that’s our doctor visits in a nutshell. On the other hand, Wade is absolutely amazing!! He has the best smile and the biggest brown eyes that smile themselves! He has slept through the night since about 5 weeks, and even with the reflux, he’s not a fussy baby! For the most part, he’s so happy! The trunk of his body gets stronger everyday. He still can’t sit up on his own, but he loves to push off with his legs, which are very strong. He can roll from tummy to back, but just can’t figure out how to get that arm out from under him to roll from back to tummy. You can see a lot of his “issues” in his arms and hands. He goes from high to low muscle tone, so he really never knows what’s going to happen when he tries to reach—which he can’t do very well. The hardest part for me is seeing him try so hard to reach for something, but he just can’t do it!

Anyway, while Wade has been going through all of this, Curtis and I have both had our own medical issues. I was diagnosed with hypothyroidism in November. I thought I was going crazy. We’re still in the process of trying to get my meds regulated. Then I went in for a sleep study in December and discovered I also have sleep apnea. So, I have to use a CPAP machine every night. Curtis has had 2 emergency room visits. One for a kidney stone and another for HIGH blood pressure. So, he is on meds to control that. So, we’re a lovely lot, don’t ya think? Needless to say, every time I turn around, there’s a new medical bill coming in the mail!!!!

Well, did all of that make your head spin???? Again, I’m so sorry I’ve been so distant. Most of you know about the gigantic wall I build around myself, so this has been a huge obstacle for me. And we all know what a control freak I amJ God’s definitely taught me a lesson because I certainly can’t control ANY of this!!! As crazy and heartbreaking as this whole experience has been, I truly wouldn’t trade it. It’s so amazing to see how God has worked through Wade. He has such a beautiful spirit. EVERYWHERE we go, people stop and talk to him. It’s funny to watch other’s when we go out to eat. People just turn and stare at him. There’s just something about that kid. God has a very special purpose for him!

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