The weather is still all over the place here, so we try to take advantage of the pretty days when they come around. On one of the pretty days, Jackson, Courtney (PT), and myself went to the park for his PT session. He had a blast! Other than the clinic where he has all of his therapies, I haven't taken Jackson out in public in his stander. The thought of people staring at him in his stander made my anxiety level go through the roof. So, when we decided to go to the park, Courtney asked me to bring his stander so that he could practice on the different terrains.
My anxiety level was up, but seeing how big of a smile he had on his face the second that he started rolling across the parking lot made my anxiety level go down. Of course there were stares, but the kids that were at the park were so interested in his stander. Several of them, when we took Jackson out of the stander wanted to get it in.
It's been six months since Jackson's last spina bifida clinic. With that, comes the next round of testing to make sure that everything is still going well with his noggin, kidneys, and bladder. He had a fast sequence MRI, a renal ultrasound, and a urodynamic test. The renal ultrasound showed that his kidneys and bladder look good and are growing like they should be. The urodynamic test went well also and showed that Jackson is emptying his bladder like he should. There was a little bit of a pressure issue at one point, but the doctor wasn't too concerned at this time and thinks that it was just due to the catheter. We will repeat the urodynamic test again in a year, but will repeat the MRI and renal ultrasound in six months.
You would think that after everything that we have been through, I would know what fear is. That I would know what fear feels like. Boy was I wrong. Jackson started running a low grade fever shortly after coming home from his MRI and urodynamic test. No big deal, right? I started treating the fever when he woke up in the middle of the night burning up. The fever would go down and then come back as the medicine started wearing off. It became a schedule of medicine trying to keep him cool. He was very tired all day and I just assumed that it was because he was coming down with something. I didn't think anything of it other than that I hated him being sick. During one of the naps, I decided to lay down with him. While he was sleeping, he started having a seizure.
As soon as I opened my eyes, I knew immediately what was happening. He was shaking so badly that it shook the bed. I jumped up, ran to get the phone, and called 911. I am very grateful for the 911 operator that calmed me down while watching Jackson have a seizure. Once his seizure ended, he was unresponsive. A police officer was the first one at the house and he had me get an ice pack to try and cool him down and get a response from him. Even with an ice pack being placed on him, he didn't have a response. He was completely out, very similar to what happened last May.
As soon as the ambulance arrived, the EMTs rushed Jackson out and started to asses him. They took his temperature and I found out that his fever was 105.9! The good news though was that he became responsive once in the ambulance. I guess he didn't like the EMT's picking at him. The ambulance got ready to leave and when they did, I followed them to the hospital close to our house. Matt was at work during this, but thankfully, they understood the necessity of him needing to leave, so he was able to meet us at the hospital once he got back to work.
At the hospital they ran all kinds of blood work, gave him some ibuprofen to bring down his temperature, and did a chest x-ray. Once the ibuprofen started to kick in, he perked up some and even ate a popsicle. The blood work and chest x-ray all came back clean. They couldn't find the cause of the fever which is good, but bad at the same time. I hate leaving the doctor's, hospital, basically anywhere without answers to questions. After several hours, we were finally discharged. Jackson's fever kept going up and down for several days after, but thankfully he didn't have another seizure.
Since we saw the urologist at the urodynamic test, our recent SB clinic actually was quite quick. We only needed to see ortho, neuro, and nutrition during this clinic. Ortho was the first one to come in, but unfortunately we didn't get to see his normal doctor for whatever reason. Ever since Jackson's growth spurt, he's been having a little bit of difficulty walking. The first two steps are good, but then he starts dragging his toes. I brought this concern up to the ortho, but she assessed his walking and decided to give him some time to figure things out before trying to find a way to intervene.
Neuro was the next one in and we discussed Jackson's MRI. According to the doctor, there were no changes from his previous MRI six months ago to the most recent MRI!!!! Jackson's ventricles appear to be stable and the cyst that he has appears to have not grown anymore. I asked the doctor about Jackson tapping his head, it's almost like he's trying to indicate that it is bothering him and the doctor decided to refer Jackson to a pediatric ophthalmologist to get his eyes checked and to make sure that there isn't pressure building up behind them. The ophthalmologist will check Jackson to see if he has papilledema. Fun word, huh? Papilledema is a condition in which increased pressure in or around the brain causes part of the optic nerve inside the eye to swell. So, basically, even though his ventricles haven't increased in size, there could possibly be pressure behind his eyes causing an issue. If Jackson does have papilledema, we will be going back to see his neurosurgeon to discuss the need for an ETV (endoscopic third ventriculostomy) to help with the pressure.
We all know how cute and amazing Jackson is, but he's finally getting some recognition for his cuteness and amazingness. The SB coordinator got in contact with me about the possibility of taking some pictures of Jackson to put in a SB brochure that will be given to new parents. Of course I said yes! She followed us around the day that Jackson was having his MRI, ultrasound, and urodynamic test done and then took a couple of pictures on clinic day. I provided a write up for the brochure giving some tips on what to expect from the first clinic and offering some tips on things to be prepared for. I can't wait to see the finished product and really hope that new parents find it helpful.
Jackson has gotten really good at sharing and even tries to share with Aubie and Chevelle. One day while he was eating a snack, he decided that Aubie needed some and put several on her. She seemed confused, but didn't jump up, she just licked them off of her and continued her nap. Both cats like to sit in my lap and Jackson has gotten a little jealous of them. Every time that they come sit with me, he decides that he wants to sit in my lap also. So, I've been working on him sitting next to me and petting the cats while we all sit on the couch together. We still have moments of hitting or trying to be rough, but they are becoming fewer and fewer.
Jackson has found a new hobby of sweeping. Every time that I open the pantry door, he wants the broom and starts to sweep the floor. It's really cute to watch and he does really well with not banging the broom on anything around him. One day while I was making lunch, Jackson figured out how to open the pantry himself. One minute he just had the broom, the next, he started emptying the easy mac box, stacking the cups, and then putting them back in the box.
Jackson is learning all kinds of new games, but his favorite at the moment is "got your nose." He sat on the couch, well, he sat on Matt one night and kept grabbing Matt's nose for an hour. He laughed the entire time and had a great time. He also loves to race Matt and I. He does this cute tap thing with his hands on the floor as his way of "starting his engine." Once he taps his hands, you know that it's race time and you better get ready.
With Custom Creations business picking up, Elena and I have been working a lot which means lots of play dates for Jackson and his friends. Since starting to play more with Elena's little girl and the little boy that she watches during the week, I have seen such a difference in Jackson. He is opening up, learning to play with others, "talking" more, and is gaining more independence. It's been great for the both of us.
Jackson's hair finally grew long enough for him to get a big boy haircut. I knew that it was going to go one of two ways. Either he was going to be completely fine with getting a haircut or we would both be in tears because he hated it and was scared. He was such a big boy and didn't shed a single tear! He was more interested in what the hair stylist and the people around us were doing. It was great! I have to admit that when the hair stylist cut the first curl, it felt like a dagger to my heart.
Now that the weather seems to have made up its mind, I'm trying to get Jackson outside more to play. One beautiful weekend, Matt and I took Jackson outside for him to play and explore in his stander. He had a blast! He rolled himself around the driveway, went in the grass, and even explored the road a little bit. He is amazing in his stander and it gives him so much freedom.
All of Jackson's therapists have been working on building his core strength and his occupation therapist has started working with him bear crawling. It is so cute seeing him up on all fours and he finds it pretty funny when the cats try to walk under him.
We finally got word that Jackson's wheelchair has been approved! We are so excited for Jackson to have another means to be mobile. He absolutely loves his stander, so I have high hopes that he will love his wheelchair just as much. Having a wheelchair will allow him to have more independence while we are out and about.
Recently, Jackson has been given the nickname "Hulk" by his orthotist. His reason? Jackson has broken his cables yet again. Not only did he break his cables again, but he broke them in a place that his orthotist has never seen done by a child Jackson's size! While we are waiting for the part to come in for his cables to be fixed, we were able to have his afo's removed from the cables so that he has at least a little bit of stability and something to help keep his feet in place. It's amazing how much stability that the cables truly give Jackson. Without the cables he can't really walk, his knees buckle and turn in, and his feet turn in and cross.
It's so hard to believe, but it's been two years since Jackson and I underwent fetal surgery to repair the hole in his back. All of the emotions, fears, thoughts, etc. are still very raw for me. The fear, the sadness, the joy of knowing that Jackson made it through the surgery, the worry of making sure that he stayed put for as long as possible, all of it, it's still there, it's still haunting me.
My hope for Jackson is for him to be proud of himself. To be proud of his disability and teach others about it. To be given the chance to do anything that he puts his mind to. To emit kindness, compassion, and love and that others around him follow suit. My hero doesn't wear a cape, he wears afo's, walks with a walker, is so determined, and is absolutely defying all odds. Take that, spina bifida!
Crystal
