Sunday, June 29, 2008
Friday, June 13, 2008
Before the OT came, my ECI (early childhood intervention) coordinator came by to have me sign some papers. She asked how I was doing and how it felt now that Wade's a year. WRONG question to ask me today! Of course I started crying again. It's silly really, but the little things just start piling up. We have to do everything for Wade--hold his bottle, support him when he's sitting, hand him his toys so he can try to play, etc. I'm sure you're thinking, "Of course you do. He's a baby." Well yes, but most one year olds can do these things on their own. I don't mind doing it, he's my son. But it's so exhausting sometimes. And it's really hard, because as much as people try to understand, they really don't. My coordinator said she would get some paperwork together for me about support groups and such, and bring it by next week.
Afterwards, Wade and I had to go to Wal-Mart. I was on the baby food aisle getting mad because I shouldn't have to be feeding him stage 2 baby food at age 1, and this lady was standing there. She looked really familiar, but I didn't want to be embarrassed if I said something and was wrong. Eventually I couldn't handle it anymore and asked her if she worked at Curves. She said yes, blah, blah, blah. Then I asked how her daughter was doing. Then I got really bold and asked her what her daughter's disability was. (I remember when I worked out there for oh, about a week, I saw a picture of her daughter and knew she had some sort of disability.) She kinda got this weird look on her face, and told me some sort of muscular dystrophy--MSA maybe???? Still looking confused, I threw in really quickly that Wade has cerebral palsy and I was just wondering if she knew of any support groups. Well, she was FULL of information. She knows someone who has 2 kids with CP, and she has some supportive equipment she's going to give me, and she works at Cooks Hospital and has tons of resources from there. It was so nice to have someone actually understand my feelings. Her daughter is now 6, but she says there are still days that she cries. She made me feel normal. So, my bad day turned into a very informative day. She was the answer to my prayers today!
Then, Stacey and I went to On the Border to relish in a Mango margarita;-)
Thursday, June 12, 2008
The PT came today, and I was telling her about it. The only problem is that he's not rolling over "correctly". He's kinda pushing off with his feet and using his back muscles instead of his stomach muscles. Wade has a lot of strength in his back and legs, so he uses those for everything because that's what he knows how to do. Unfortunately, he has hardly any stomach muscles. So, that's what we need to really be working on. He doesn't like if very much, but if we can get that going, hopefully he'll be able to sit up soon!
Sunday, June 8, 2008
While I'm thinking about it, I thought this would be a perfect time to express our thanks to the doctors, nurses and staff at Cook Children's Hospital in Fort Worth, TX. It's kinda ironic that Wade had to be flown to this hospital from Baylor Irving Hospital where he was delivered. When Curtis and I were taking our hospital tour, we got to the doors leading to the surgical area, in front of one of the nurses stations. Our guide explained to us that if there was an emergency in which the hospital's NICU couldn't handle, the baby would have to be transported to another area hospital. The baby would have to go alone, and the father could follow. I remember so vividly telling Curtis that we didn't have to worry about that, and quite honestly, we were complaining about what a waste of time the tour was. So, we just half heartedly listened to what she had to say. After such a perfect pregnancy, who would've ever thought Wade would take his first helicopter ride within a couple hours of his birth!!
Thank goodness for Cook's! At the time--don't know if things have changed in a year--Cook's was the only hospital in our area that had the cooling blanket and technology to try to stop any further brain damage. (Parkland Hospital is also equipped, but they don't take transfers.) Thank goodness Wade qualified for this wonderful new technique. In fact, Wade is only the 300th and some baby to have the full body hypothermia treatment and only the 5th baby at Cook's!!!
The doctor's at Baylor tried to explain what was going to happen, but quite honestly no one was really too familiar with how the whole process worked. We were still very much on edge. Then Curtis was finally able to go over to Cook's. He talked to Dr. Nedrelow, Wade's NICU doctor, and he said he felt a lot better about what was going on. He was very confident in Dr. Nedrelow's ability, and he loved his bed side manner. Come to find out, he was also one of the doctor's who introduced the cooling blanket to the hospital. So, thank you Dr. Nedrelow for being such a compassionate, understanding, and knowledgeable doctor.
Besides Dr. Nedrelow, Wade had many nurses who took wonderful care of him during his stay. In fact one evening Curtis and I went up to the hospital, and he wasn't in his crib!!! One of the nurses had him on a "field trip"! Typically, most of the baby's in the NICU are premature, but Wade was full term, weighing in at 8lbs, 12oz! Since Wade was so big and, at the time, not hooked up to a bunch of tubes, they decided to let him out and play! Everyone was so good to him. I pray that no one reading this ever has to experience a NICU stay, but I was okay going home at night because I knew Wade was in such wonderful hands.
Our favorite nurse, Kayla!
I got to touch Wade for just a moment before he left.
Being transported to the helicopter.
Thursday, June 5, 2008
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!