We had to get up early for a 7 am blood draw for Jaxon, which of course was hard on all of us. But Jax and I just went, and Grandma and Hayden had some free time at the hotel. Jax did awesome as usual, giving them his blood, then we just waited there for a little bit for his hand x-ray. That took no time at all, and soon Jax was having breakfast, and getting ready to go swimming again. I was super tired, even though I had had a good nights sleep, so Grandma took the boys down and let them swim while I had a nap, which was awesome. When they got back I really started feeling icky...so we just took our time in getting out of the room. We had Jaxon;s next appointment at 1:15pm, and we stayed there till the very last minute. I was in the bathroom most of the time, and was just hoping to get thru the day and get home. I felt okay when we first got there, and even into the Endocrinology appointment. Dr. Lietiff is such a nice lady, and took her time with Jaxon, asking a lot of questions, and bringing up some for me to talk with Dr. Mason about. She feels like Jaxon is growing, slowly but surely. He has grown 3 cm in the last 6 months, but hasn't gained any weight. He is almost at the 3rd percentile mark on the growth chart, which he was SO far away from a couple of years ago, so that was fun to see. She also said that his growth hormone was still at the right level and his bone age (measured by the hand x-ray) was 11. Which all means that he still has time to grow, and we don't have to put his body thru growth stimulant yet, which is a good thing. She did say that his cortisol levels were low (which means that his adrenal glands are suppressed , even now), and that any sign of him not feeling well, we have to stress dose him with prednisone. That will keep him away from anything icky happening, and hopefully help him start feeling better sooner. So it is just another thing to watch right now with him.
By the time she was done, I was feeling horrible, and could hardly stand and wait for the sheets that were being printed out for me. They all told me to go lay down on the couches, and made sure I was okay. They also thought I should not go to Dr. Mason's appointment cause I looked pretty bad! I had Mom take Jaxon and Hayden to get some lunch (cause we had stayed in the hotel too long to even get anything for them, poor kids), and I just laid there. After a few minutes though, I was running to the bathroom to throw up. I never thought I would EVER puke in a public bathroom, but I didn't have a choice. My Mom said I was super pale...but I really wanted to stay for the next appointment, cause I knew how important it was! They got us in a little bit early, and in between the fellow and Dr. Mason coming in I had to go puke again. It was actually good timing though because I was pretty with it when Dr. Mason came in. He checked Jax out of course, and was pretty concerned about his knee and both of his hips. We talked ALL of his information thru and both feel that the spinal tap is the best way to figure out what is going on. Why is he producing too much spinal fluid, and what is the cause. He said that it was very rare, but possible that it could be his disease. It has been seen before, but only in 12 people (recorded). He also said it could be an infection, or another autoimmune disease, creeping in. It also could be his medication, but because he has been on it for so long, and we haven't changed it in over a year, he really doesn't feel like it is that, and neither do I. The spinal tap will tell us all of that, and can even bring his pressures down to a normal level, so that he can start feeling better sooner. Dr. Mason is going to be gone on a mission trip the 1st part of Feb. when we were planning to come for all those other tests and follow ups, so we are going to push them back a week. So when we come we will be having all the other tests I was talking about, and cortisone shots in his knee, both hips and wrist. He is always sedated for this, so Dr. Mason said Jaxon should just be sedated for his spinal tap too, and do them both at the same time. Which is awesome, and of course made Jaxon's day! It will be so much easier to be sleeping when they do the spinal tap, and Dr. Mason felt like Jax is going thru enough, he need that extra stress of that awake! So we have a plan ready to go, and will see what all the tests say then go from there.
When we were done with Dr. Mason we still had to get the boys their flu shots (which they were both NOT HAPPY about, but it was easy and fast, and now we are done), and Jax had to give a urine sample. It was 5:30pm when we walked outta there, and had really started to snow. I had talked to my dad earlier and he said that the roads were bad to the cities, and the traffic was bad because of the weather. Hearing that along with how I was feeling, we decided that there was NO way that we were going home that night. Jeremy got us a hotel (actually right next door to the one we were staying at) , and by the time we drove in, I was ready for the bathroom again. Mom and the boys unloaded the whole car by themselves, and took such good care of me. We had a great room, there were kinda 2 rooms, the main room with a pull out couch, and the other one with the bedroom. There was even a door, and each room had a TV, so when Mom and the boys were there, they just hung out in the bedroom with the door closed, so I could just rest. I didn't throw up the rest of the night, but was running a fever and SO achy and cold. The hotel had a great pool, so Mom took the boys swimming for a long time. I hardly moved...there would have been NO WAY that I could have driven home, not to mention, that none of us needed that extra stress!
So there you have it...the NOT so fun Friday!!! Again, I know this is a lot of information, but it also helps me to get this off. of my mind and out in writing! Thank you all for being patient with me, and for praying, and caring, and even reading all this stuff. It is a lot to take in for all of us, but we keep trying to put it all into perspective. I know the prayers and thoughts have helped us and will continue to help us!
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