January 31, 2016

I cant believe it has been about two months since I last updated the blog! Hopefully I can remember everything that has happens over the last two months. December was pretty crazy for us. Cameron was finishing up his semester and had several finals where he had to pass them or he would fail out of the Paramedic Program. He spent all day every day studying for about two weeks and ended up passing all of the tests which was great! We then took off to California for Christmas! I was so excited to go home because I hadn't been home since my sister's wedding a year and a half earlier. We left around 7 PM during the week because there was only about 24 hours between winter storms and we drove all night until we got to California. Cameron and I switched back and forth a lot and we were pretty exhausted when we arrived but Tyson slept through about 13 of the 15 hours which was our goal. My sister Brenn also came with us which was a huge help during the drive.

While we were in California we had a lot of fun visiting friends, going to the beach multiple times and not having our nose hairs freeze every time we walk outside! We were able to see two different cranial sacreialists while we were there for two appointments for Tyson. It was really cool to see two people working on him at once and also seeing his reaction to what they were doing. It is amazing to start seeing different aspects of the body that need healing that are not part of the medical field. We also visited the Air and Space Museum in San Diego while we were there. I was a little worried about how Tyson would handle all of the stimulation and people but he did great with it all! I visited with some of my best friends from high school a few times and enjoyed spending time with my family during Christmas! On our way back from California we visited with my Grandparents in Saint George for a few days and it was so fun to see them and spend that precious time with them. Cameron also celebrated a Birthday at the first of the year and turned 25!! There are a lot of pictures from our trip below.

Tyson was being weened off of the Prednisone while we were there and had one week were he didn't have the medication at all. He slept just about every night while we were there and was pretty mellow as far as his behavior. Unfortunately his seizures increased during the ween so he was having about 10 to 15 a day while we were at my parent's house. We knew at that point that we would be starting his new medication in January called ACTH and hoped that that would cure the seizures.

After we left Saint George we stopped in Salt Lake for a day to do some appointments for Tyson. We visited with his Ophthalmologist and his Comprehensive Care doctor. Nothing new happened but we were told that Tyson's weight gain had stopped which is what we wanted to have happen which means his calorie level was at the right place and that his eyes still looked good but we just need to keep working on tracking with him and doing therapies.

When we arrived back in Idaho Cameron started school the next day and we started back in our routine of therapies, new medications and helping Tyson learn how to eat again. We started his ACTH the day after we got home as well and his nurse came over and helped me draw it up and give it to him for the first time. It has to be given as a muscle injection and the first two weeks it was given twice a day. It really wasn't fun to give him those shots so I usually passed that honor off to his nurses or Cameron but I usually did it about once a day or once every other day depending on schedules.

As he was on the medication we started seeing some low heart rates at 50 bpm while he was sleeping. He wasn't showing any other symptoms but it was defiantly scaring me! I took him into his pediatrician and we ended up taking him to the local hospital the next morning to get set up with a 48 hour houlter study which is like an extended EKG. We believed that it was just one of the side effects from the ACTH. When we got the results back it actually didn't show any low heart rates like what we were seeing and showed his arrhythmia that we already knew about which isn't harmful. I was really happy that his heart rate wasn't as low as we thought it was which was really good!

The week after we got home and started his new medication his seizures stopped completely. As of right now we are 2 1/2 weeks seizure free!! We also took a quick day trip down to Salt Lake to see his neurologist. My sister Brenn came with me which was a huge help! We had some snow on our way down which was nerve racking but we made it there and back safe. His doctor didn't have anything new to say but just wanted to check in with him because he started the new medication and there is so many possibilities of different side effects that we haven't experienced which I am grateful for.

Since his seizures has stopped Tyson has become a totally different kid! He has started laughing and giggling, interacting, rolling over all by himself really quickly, eating all of his food orally, talking to us non stop, he has gotten stronger and holding his head and trunk, and he he wiggles around on his stomach when we can stop him from rolling. We are now almost done with the ACTH treatment (I think we have 8 days left) and then we hope his sleep will start to regulate and he can come off some more medication over the next few months.

Since we never have a dull moment Tyson was diagnosed with MRSA this last week. He started having some boils on his skin about a week and a half ago and I took him to the doctor where he originally just gave us a normal antibiotic but after some testing he was diagnosed with MRSA. So we got him on some new medication that should get rid of them which will be great. We think that he got it through his g tube since that is an open area and since he is immune compromised with the ACTH he was susceptible for infections. As his immune system returns to normal he shouldn't have too much of an issue with it in the future but he will be more likely to get it again when he is immune compromised. The boils are getting better but not completely gone yet.

It is a possibility that his seizures could return or that he could start having other types of seizures but we are in a good place right now which is amazing and we hope to hang onto it for as long as possible. If they do return we won't do any steroid treatment again but we will try other medications if they are needed. I have heard from other parent's who have kids with these types of seizures that as soon as they stop the kids just start developing again doing better then any doctor predicted! We are so excited to see where he will be in the next few months!

Since January I have stopped drinking soda on a daily basis and I have started working from home part time. I decided that the soda was making me so tired and I hated being dependent on it every day so I decided it was time to cut the strings! It hasn't been easy but I definitely feel better. I have also started selling Renatus Real Estate Education and I have also started taking the classes which has really changed my mindset about Real Estate Investing and how to gain financial Independence in the next several years. Gaining that financial freedom is really important for us because we want to be very stable for Tyson and not have to worry about if we can pay rent or dependent on the Government for all of Tyson's care.

But that is what has been going on with us! Thank you for all of your prayers, fasting and kind words for our little family! We have more support then we know and we appreciate all of it!