Jackson has found out that he LOVES jingle bells by playing with the fur babies' toys. The bells on the cat's toys were so small and not put on very well that I decided to buy him his own set of jingle bells. He has been having a blast with them! The cats are enjoying them as well and will try to play with them while Jackson is shaking them.
We have been waiting on word from the insurance company about Jackson's stander for what seems like a year. Well, we finally got the letter... They denied it! They claim that it's a comfort and convenience item. Really? It's comfort or convenience for a child to be able to stand? To be able to gain the muscle strength that they will need in the future? I was so hurt at first, but then became extremely mad. We will be fighting the insurance company, but while that happens, Matt has a friend that has generously offered to loan us their son's stander. We are so, so thankful! The gentleman from NuMotion, the company that we are ordering the stander from, came over to let Jackson trial the stander that we will be fighting the insurance company for. He wasn't really sure about it at first, in fact, he was pretty scared, but he eventually warmed up and even pushed himself forward and backwards several times.
In preparation for Jackson's latest spina bifida clinic, he had to have a sedated MRI. The renal ultrasound is routine, so it wasn't anything new and I knew what expect. However, this was the first time that he a sedated MRI. I was a nervous wreck. I had no idea what to expect and how he was going to do. From start to finish, the MRI took about an hour. My mother in law went with me, so she kept me sane while we were waiting for the nurse to call us to let us know that he was done and in "recovery." From what the nurse told me, he did great. They did have to prick him twice because the first IV didn't go well due to his lovely, chunky wrists. When we went back to "recovery," Jackson was just starting to wake up and when he saw me, he immediately sat up and wanted to be held. My heart did an extra pitter-patter.
The latest SB clinic went really well and none of the doctors had any concerns. Neuro, the physician assistant, Haley, discussed the sedated MRI with us and explained that Jackson's ventricles hadn't increased any from the last MRI that he had done three months ago. She did mention that the cyst that he has appeared to have increased very slightly, but she wasn't very concerned about it. She just told us that it's something that they will monitor. The cyst is something that he's had since birth, it's nothing to worry about unless it suddenly increases in size.
Urology discussed Jackson's latest renal ultrasound and told us that everything still looks great in regards to his bladder and kidneys. The plan is to do the urodynamic test in six months. The urodynamic test will test how well the bladder, sphincters, and urethra are storing and releasing urine and will check on the bladder’s ability to hold urine and empty steadily and completely. The last urodynamic test that he had done, he was itty bitty, so it should be interesting this time now that he's moving more and doesn't really care for staying still.
Physical therapy and occupational therapy were very happy with Jackson's progress. They each took turns checking things off of their checklists and asked questions about things that Jackson is doing at home. Neither one had any concerns, but the physical therapist sat with me and brought up the idea of getting Jackson fitted for a wheel chair. I was floored. I wasn't at all prepared for that conversation. In my mind, he's too young, he's showing signs of wanting to cruise, he's getting quick at crawling, etc.
According to the physical therapist and the ortho, getting Jackson a wheel chair will give him the freedom that most children already have at his age. Instead of having to sit in someone's lap while at the doctor's office, he could move around and explore. Instead of riding in a cart at the store, he could propel himself and be given the freedom his peers have. A wheel chair... a wheel chair... my baby is getting a wheel chair. If I say it over and over again it will eventually be ok, right? The ortho explained that we don't have to use the wheel chair at home. In fact, he suggested only using it while out and about. While it's still hard, still kind of heartbreaking in way, Jackson has an appointment to get fitted for a wheel chair on October 19th. While he will have the wheel chair (eventually since we've been told that it's a long process), that in no form or fashion means that we won't continue pushing him and encouraging him to get up on his feet, cruise, and one day walk.
We discussed Jackson's eating concerns with the nutritionist. Within the last month or so, every once in a while, Jackson will be eating great and then all of a sudden get choked up and will throw up a bunch of mucus. It was only happening at night, so we thought that maybe all of the extra mucus from him teething was sitting in his tummy all day building up and then when he tried to add food on top of it at dinner, his tummy just didn't have any more room. We also wondered if maybe Jackson was having a rough time with whole milk. The nutritionist wasn't sure either way, but was happy with Jackson's weight and height. She suggested backing off on the whole milk some to see if that helped and suggested seeing a GI doctor to see if anything was going on that we didn't know about.
When I took Jackson to the GI doctor, she ordered a swallow study and an x-ray of his tummy. The x-ray came back normal, but the swallow study showed that Jackson was aspirating liquids. He wasn't doing it every time, but often enough for the doctor to tell us to start thickening his liquids. The study also showed that even though he appears to be chewing his food, he is in fact just pushing it to the roof of his mouth and breaking it apart with his tongue before swallowing. The doctor suggested that I get him evaluated for eating therapy to help him learn how to eat properly. I'm waiting for the referral, but once that happens, Jackson will have therapy with his physical therapist, occupational therapist, and a speech therapist. Our weeks keep getting more and more busy.
Jackson finally got his new set of AFO's. Yay! Going through the early intervention program took longer than we thought, since the state had to approve everything before Jackson could be fitted for the AFO's, but we have them now and are so happy that they are the right size and height for him. Matt and I are so thankful for the early intervention program. Because of them, we didn't have to pay anything for Jackson's AFO's. They also pick up the bill for all of Jackson's therapies, well, whatever part insurance doesn't cover.
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| New AFO on left |
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| New AFO on right |
Jackson has been working really hard with Miss Courtney, his physical therapist. He has gotten so quick with crawling and now loves to race whoever is willing to get on the floor with him and kill their knees on the hardwood floors. :) Courtney has been pushing Jackson with cruising along on the furniture and just recently started getting him to stand with his back against the wall. He's doing great! She's also been working with him with crawling up the stairs and I'm happy to report that he can now crawl up the stairs all on his own!
Jackson's personality is coming out more and more. He is such a happy, loving, funny little boy. He is definitely a goofball and makes us laugh each and every day. He has started becoming stubborn and appears to have mastered selective hearing. His laugh lights up a room and snorts when he laughs really hard. He loves to make mouth farts and has figured out how to make noises with his lips. He loves his fur siblings and gets upset when they walk away from him. He has so much determination and gets so proud of himself when he masters something. He giggles when he tries to sneak away and gets into everything. My heart is bursting with love for my sweet boy, but I'm sure that's obvious. :)
There is nothing worse than your child being sick. Jackson ended up getting a stomach bug or something and it was awful. He didn't want to play, wasn't really talking, nothing. All he wanted to do was snuggle and looked like he felt absolutely horrible. Chevelle decided to keep us company at one point and laid with Jackson while we were sitting on the couch. Aubie kept coming around to check on him, but once she determined that Jackson was ok, she would walk away.
Well, I think that about does it for this post. Hopefully I covered everything and didn't leave anything out. I'll continue to update on Facebook, but be on the lookout next month for another blog post.
Crystal
