On November 19th we celebrated Tyson's first birthday. Originally we were going to have a party with friends and family but because we are trying to limit his contact with large groups of people we decided just to have his two Aunts and Uncle over who live close by. We had cake and opened presents while skyping with Tyson's Grandparents. He is defiantly loved and got lots of presents that will help him progress with his therapy. Tyson also got a vitamix which will be amazing as we start his new blended diet with real foods. During the evening while we were trying to open gifts Tyson was pretty upset and agitated from having a bigger seizure spasm earlier in the evening and because it was just about his bead time. Over all his birthday was good and we enjoyed celebrating him. Latter that night our nurse came over so Cameron and I went out on a date to celebrate 1 year since no longer having to share my body!!
Tyson's Facebook Birthday Update: HAPPY BIRTHDAY TYCOON!! My favorite little person is turning 1 today!! We feel so lucky and blessed to still have him with us today to celebrate his life!! He is 32 inches long and 35 lbs. He is in size 3t clothes and size 5/6 diapers. He can hold his head up while he is on his stomach and he has almost figured out how to move around on the floor. He can eat and drink orally. He lives to jabber and tries to make clicking noises with his mouth. He hits his mommy when he is tired/frustrated/wants his binki. He will giggle/smile to different funny things that we do. He is not a fan of cameras and defiantly loves his daddy. We are so excited to see this little man continue to progress! Thank you for all of the love and prayers we have felt over the last several months. #tycoon #tystrong
On Sunday we learned that Tyson's Nonna (Grandma Donna) would no longer be able to come to Salt Lake to help me with Tyson's appointments because she got sick. We were all sad she couldn't come but we decided to have Cameron come with me instead. He was originally going to stay home for classes but decided it wouldn't be too big of a deal if he skipped. We headed down on Sunday and stayed in Salt Lake City. Tyson was so happy when we arrived he was giggling and talking non stop as he stretched out over the bed. Luckly the roads were great all the way down and we didn't have any issues getting there.
On Monday Tyson had an EEG scheduled at 8:00 AM at Primary's. He handled it like a champ even though he doesn't like when people touch his face or head. I was able to hold him and he was asleep for most of it which was great. They were able to see that his spasms are getting better. During the first EEG that we did a few weeks ago all of his brain waves had this chaotic pattern to them. On Monday when we did his new EEG he would have periods of chaotic brain waves and then normal brain waves and then back and forth during the whole test. They said this means that his spasms are getting better but they are not gone yet. They were able to diagnose his infantile spasms with this chaotic brain wave pattern to begin with. If they had caught a spasm on the EEG they said that it would have looked like seizure behavior but he isn't seizing all the time.
Later that afternoon we met with our Neurologist who explained what I just wrote. She also answered my two pages worth of questions and told us that Tyson would probably be on his Phenobarbital (seizure medication that is hopefully controlling other seizures we are not having right now) for another year or two depending on what happens in that period of time. They won't leave him on this medication life long because it has some undesired side effects but since it is doing a good job right now we want to leave it on. That was a bit disappointing to hear but I would rather continue to manage his seizures instead of pulling him off of it and getting more seizures and having a difficult time gaining control of them again like we did in the hospital.
We also found out that we will start weening him off of the steroids on November 30 (today!!) and that ween will take 4 weeks and then we will have 1 week were he isn't on anything to manage the spasms. Luckily his spasms continue to get better. In the last week he has only had 2 or 3 bigger seizures where he is crying and super upset afterwards. And even though we are starting to ween him off of the medication we hope to still see improvements because the doctors said that they often see the symptoms lag behind the treatment. If the spasms are not completely gone by the time we are done with the ween then we will probably start Tyson on a medication called ACTH which is a synthetic steroid. They said that it often works better then what he is on right now to treat the spasms because it targets the inflammation better. But the reason they don't use it as the first medication is because it is so expensive ($10,000 per vile) and it requires weeks of insurance preauthorization even though Tyson is on disability medicaid. So his doctors are working on getting that preauthorized while we do this ween in case we need to go that route. Unfortunately the side effects of the ACTH will be very similar to the medication he is on right now. So he could be immune compromised and irritable longer. Since Tyson has been on the steroids he has also had trouble taking naps and sleeping and night so that is also an unfortunate side effect. The good part about the infantile spasms is that since he has gotten better the spasms wont get worse then they are now. They will either stay where they are or keep improving from here. But that is the plan as far as neurology goes.
On Monday afternoon Tyson went and saw his Cranial Sacral Therapist in Salt Lake. She is so great with him and I think he always makes some kind of improvements while he is there. I think this time it helped his hands open up more. For some reason they have been pretty tight the last few weeks and since she saw him they have been open a lot more which is great!
On Tuesday we had a short MRI scheduled early in the morning and then a Neurosurgery appointment right afterwards. Tyson did great with the MRI (It was only about 2 or 3 minutes long) and then his Neurosurgeon said that his ventricles are looking smaller and more normal shape which is great. His brain overall has shrunk around the edges and there is more fluid around the outside of his brain. This is just what was to be expected from the Meningitis. We were told in the beginning of his disease after they knew the extent of the brain damage that this would happen. We will probably see him one last time in May or June but we wont have another MRI so the worry of Hydrocephalus (swelling of the brain) is defiantly decreased which is great!
Our last appointment was with our Nutritionist and Comprehensive Care Doctor. We met with the Nutritionist first and we also had a representative from Rainbow Kids with us. Rainbow kids are great advocates and are there for support and helping to bridge the gab between the provider and the parent's understanding and wishes. I was really worried about convincing the Nutritionist that I wanted to do a blended diet along with an all natural formula supplement so before we went to Salt Lake I called Rainbow Kids and asked if we could have a representative with us during that appointment.
When the Nutritionist came in she wanted to start Tyson on a toddler formula that is pretty standard but is not very healthy in my opinion. The product she wanted us to use had the second ingredient as corn syrup. I told her that I didn't want to go that rout and that I wanted to do a blended diet with real foods. She was a bit skeptical and told me that we would have to meet with a blended diet specialist in order to go that rout. I showed her my recipes I had already worked on and planned listing all of the calories, fats, carbs, sugars ect... that would be in the recipes. She was very impressed and our Rainbow Kids rep reminded her that we were from out of state. So in combination with both of those things she decided to work with us directly and help me do the Blended diet for Tyson since I had already done most of the work anyways. We went through the recipes together and changed a few things but overall she was really pleased with my plan. She also wanted us to use a toddler formula from our home health company as a back up plan. I had already researched and found an all natural formula that I wanted to use. I also found a provider that is in Idaho so they knew exactly who to send the prescription to. Again because I had done the research and planning ahead of time I was able to get the toddler formula to have on hand to use as needed in conjunction with the blended diet. I was so happy with the meeting and having it go just as I wanted it to.
When we spoke with our Comprehensive Care doctor we discussed Tyson's medications along with cutting his calories to help manage his weight better. He is well past the one 100th percentile in both weight and height for his age. His steroids are contributing to his weight gain but so is his inactivity. I told him my concerns about him having a human growth hormone imbalance. He said that it could be the reason he is so big but there are other factors right now. We are going to watch him over the next few months and see if his weight averages out and then discuss tests for human growth hormone imbalance.
With his doctor we also worked on Tyson's medication schedule. He gave me a few suggestions but due to Tyson's fussiness and lack of sleep he pretty much gave me permission to change his schedule around so that it works the best for me. Now that I have rescheduled it Tyson is getting food 4 times a day and he gets meds 5 times a day between 7:30 AM and 9:00 PM. This schedule is so much better then anything we have done so far. Overall our appointment with him was great, after we left there we went and drew some labs and since Tyson is so big now they actually stuck him with an IV needle instead of just poking his foot and getting blood out that way. The phlebotomist were great and were able to get it without too much of a struggle.
When we left the hospital we headed back to Idaho. On our way we picked up some In N Out and we also realized that Tyson had a major blow out in his car seat.. It took us about 30 minutes to clean him up and get him back in his car seat clean. Tyson slept for a while and then was pretty mad for the last two hours of the trip. We got stuck outside of Blackfoot because there was a major accident for an extra hour and Tyson by this point was super mad so we got him out, changed, food and gave him meds, We were all exhausted by the time we made it home that night.
On Thursday when we woke up Cameron realized that Tyson had his med port open while he was getting his feeding earlier that morning. Which means he essentially "threw up" all over himself. Cameron started cleaning him and in the process accidentally pulled Tyson's G-Tube out and popped the balloon that holds it in his stomach. We have an extra button on hand so we were able to put the new one in easily. But it was kind of a crazy morning. Latter we had thanksgiving with us and Cameron's sister. We just did a small dinner but it was really good and I also realized that it was so much easier to cook thanksgiving dinner when you don't have to make doubles of everything that are gluten free! Both of our families have people who are gluten free eaters so it was a bit of a change not to do that. But we enjoyed our dinner and Tyson ate some mashed sweet potatoes. I also made bone broth with our left over turkey bones! I am super excited to use that in Tyson's first blend mix!
Tyson is still progressing despite having the infantile spasms which is awesome and surprising all of his doctors. He is starting to track people who are talking around him by turning his head. He is also laughing a lot more with prompting which is so fun. He loves watching football with his dad and will watch the TV and mimic his dad when his dad yells out at the TV. Overall our boy is getting better and stronger. Thank you for all of the love, support and kind words that so many people give us near and far!
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