Jaxon Day #2

 Jaxon's morning of Day 2 started off pretty easy...he was suppose to have a test right away in the morning to stress his adrenal glands, to see if they would work at all. But because he had lots of cortisone injections the day before it would have led to a false positive, so his endocrinologist decided we'd better just wait until that was out of his system. He was happy of course cause that meant NO IV, and NO blood tests for the day :) For me it was great because we got more time to go back to the hotel and take time packing up, which is always better than doing it in a rush! After we checked out of the hotel we stopped to grab a quick snack, and headed to Jaxon's noon EEG.

These 2 pictures are taken after about 45 minutes sitting in a chair gluing all of these things to Jaxon's head. Jaxon looked like he was getting a bunch of extensions in at the hair salon ;) They have to measure different points on his head and connect the right colors to the right places. It was a very precise thing and was interesting to watch! They glued the little wires to his head and dried them with an air machine. Then it was time to get into the EEG room...

First they had him sit in the chair with his eyes closed and answer some questions...math and others.

                                            Then they had him read and look at some patterns.

Next he had to keep his eyes open while they flashed bright lights in his eyes, first they were slow then it got really fast. Then he had to do the same thing, but with his eyes closed. 

 Me waiting :)

 Next up was nap time...we had to stay awake 2 hours later than his usual bed time (so we were up till around 11pm) and then we had to get up 2 hours earlier than his regular wake up time. So we were up at 5am. He was nice and let me sleep till 6am, and he just played on his iPad...what would we do without technology!?!

He was pretty tired, so he went to sleep very quickly! They let him sleep for about a half an hour, and I had to stay in the room this time, cause he was a little insecure, which was just fine. I didn't fall asleep, but just rested my eyes and relaxed. After he woke up, they got the wires off of his head and we were able to go. It went really well, and they said that he was the perfect patient and they got good readings on him.

Hayden and Jill just hung out in the waiting room which got a little long (about 2 hours), but Jill said that Hayden did really well and just looked at his cards almost the whole time.
Next were the appointments with Dr. Lietif (his endocrinologist) and Dr. Keating (his neurologist) after that.
Dr. Lietif was a pretty easy appointment, there wasn't anything new to discuss because we were unable to do the adrenal stress test. We set up a time to get that done the next time we are in town (March 14th), that was about it.
Our last appointment was the BIG ONE (hopefully answers!!)...we even got in a tiny bit early! So hear is all the info that I can spill out of my mind, which is A LOT.....
First off, Jaxon's spinal fluid was CLEAR!! It looked great, and had no indicators of infection, cancer, red blood cells, too many white cells, or any inflammation from a possible other auto immune disease. That is the biggest news, and best news to tell :) We can put all of those worries to rest now, and not have those questions in the back of our minds all of the time. Also the other positive was the results of his EEG, Dr. K said that for his age his markers should be in the 8-10 range (again I have no real idea what that means), and he was at a 10. She said that just means that his brain at that moment was functioning how it should for his age, especially in the background (??) She said that our brains had a beat like a heart, and that beat in the background of all else is what is important. She did say that she wished we would have seen what his brain looked like the day before, before they took off all of that spinal fluid. She knows it would have been different! She said with all of the pressure on his brain, with fluid so high, his brain is working at a dial-up  internet speed. Our brains work at the high-speed rate... both are getting the same information, just at different speeds. I thought that was a good analogy! Jaxon's brain just takes longer to get the information (when his fluid is high). The last 6 months I know that this is what has been happening to him, and that is why school has been a struggle! She said that one of her biggest red flags is the fact that we held him back this year in the fifth grade. That told her that we need to figure this out so he doesn't have to take 5th grade over a bunch of times. She thought we did the right thing, and now we know why it has been hard these last few years!
So with all of that information, there is great news, but there is still the questions as to why he is having increased spinal fluid?? And that is a big question...one that we might have to wait for and see when and if it returns now in the next few weeks. They are going on the idea that it could be the prolonged steroids in his body. Now I guess I am just not thinking it is that, but that is just me, and I am not the doctors. I  have this feeling that for some reason he developed this Normal Hydrocephalus....what I explained in a previous blog post, and I think it could just be something that he developed over time from his Still's disease, or even from the long term steroid use. I also don't feel like cutting down on steroids will help this get regulated, but again that is ME talking not the doctors. No matter what he has to be on some form of steroids when he is sick because of his adrenal suppression, so no matter what he will probably be producing more CSF (spinal fluid) as life goes on. I will be doing lots of research, and asking lots of questions these coming months. I am thinking I would like to look at the possibility of placing the shunt sooner than later so that he can get back to maintaining normal pressures even with a little steroids on board now and again. I want his brain to be allowed to catch up to where it needs to be without medications that would slow it down anyways (even if it is helping the pressure stay normal). ME, ME, ME....mine, mine, mine is how this is sounding, and how I am feeling ;) But they do say I know Jaxon best so hopefully they will hear me out, and look at the bigger picture! There are just SO many factors to deal with, it is hard for all of them to keep it all straight, let alone me! I guess when it comes down to it, I am SUPER happy with some of the answers we got this week, but am also antsy to be able to answer the long term questions, and where we go from here. I don't want to wait anymore for his sake, and for his brains sake!
Also the neuro-psych. testing will help in seeing where he is at right now and can maybe help with some of my questions. We just need to get that approved with our health insurance...which I think will be happening this week.
After all that went into my brain, and his, and Jill's (about an hour long appointment), we were all pretty fried, but wanted to get back home! So Jill was just AWESOME and drove all the way home for us!! She did a great job, and got us home around 10:30pm with a stop for food, which was much needed too! That food helped us both have the energy to get home.
Jill was such a HUGE help this last week, I can't thank her enough!!! She kept me laughing, calm, and even distracted,which was great :) She was awesome with the boys too, they loved having her along! She was just chill, and was never a bother to me, just helpful and there (which is the most important)!! She is amazing, and such a great friend! She even had a big trip the day after we got home...she left at 4am on Saturday to catch a flight to Guatemala with a mission team she went with. They are there to help at an orphanage for a week. It will be great to hear how it went, and I am sure she is not only having a blast, but is a blessing to many! She gets to see Anna Hansen, who has been working there for over a year, I am sure Anna is so excited to have her there! THANK YOU, thank you Jill for everything! Jaxon, Hayden, Jonah, Jeremy, my parents, and I are so grateful for your time and energy! You're the BEST :)
That is all I have....WOW a lot again! Hopefully this will be it for a little while at least. Thank you for praying us thru that trip, and beyond...we appreciate it a ton! It means so much to know we have so many of you behind us in love and prayers!