Jaxon has been the same since writing my last post, which as I look back was not since we were in Rochester a month ago now....WOW I have been really bad at posting!! Anyways, he has had the same symptoms now for a month which are: extremely low energy, droopy eyes (he just always looks tired), headaches, dizziness, his speech is slow and he has a hard time trying to think of what he wants to say, blurry vision or double vision, very emotional and insecure, he is sleeping a lot more than usual, and hasn't been able to go to school but for a couple of half days. His whole personality has changed! He just isn't the same boy he was even at Christmas time! When we see it everyday sometimes we wonder if he maybe isn't making some of it up, or making it worse than it is, but then you see him in pictures or my parents and other family sees him, and they notice it right away. It has been hard to sit here everyday and watch him just not get any better, and not be himself! It has been wearing on both Jeremy and I, but it is even getting to Jax now...he just wants to get better!
We have kind of plan of action right now, but it isn't anything final or anything that will get him better right away. He has been taking a new medication called Diamox, that is suppose to slow down the production of the spinal fluid in his system. He has been on it now for 2 weeks, and we haven't seen any real changes, although he hasn't had a really bad confused episode yet (so that is good!). I have been on the phone with his neurologist a few times, have emailed, and called a few times but haven't got very far. It has been frustrating, but then again I have to step back and remember that she has a ton of other patients that she deals with too! It is just hard to wait!!! But as I read last week in devotions....Wait patiently for the Lord.
Be brave and courageous. Yes, wait patiently for the Lord ~Psalms 27:14. That is just something that God is asking of us right now, and I am doing my best to trust Him and His time, not MINE! Believe me, this has to be almost an hourly prayer for me cause I am so quick to try to figure or fix it all on my own, and I instantly get overwhelmed and then give up. God wants us to lean on Him and wait for what He has for us!
So as of right now, we are tentatively going to go to Mayo on the 18th, 19th or 20th for another spinal tap and appointment with his neurologist, then hopefully be able to get in for an adrenal test that endocrinology wants to check out, and an appointment with them, and get into see Dr. Mason his rheumatologist. It will be another jam-packed short trip, but I think Jeremy is gonna be able to come with this time. I am SO excited about that :) He is all done with basketball, and isn't coaching baseball this year, so he is free(er) to come with. By free(er) I mean that he doesn't have any after school stuff he has to worry about, but just taking a day off for an elementary teacher is a HUGE deal! It means a ton of prep work to get ready for a sub and that in itself is stressful, not to mention why his is leaving...
So anywho, Jax will be having his spinal tap to see what his opening pressure is while he is on the Diamox, and he will be having the tap while he is awake like we were gonna try before. She just feels that they get a better reading that way, and there are no chances of medication interference. Jax of course is NOT too happy about his, but I know he can do it! We will be able to be right there with him, and hopefully they can get it done quickly! They are pros down there so I'm sure it will be alright :) From there we will see where she wants to go next. It seems like they are wanting to make sure there is no other issues or possibilities to look at before going the shunt route. She did say that she has rarely seen the shunt done in someone who has high pressure, but no vision struggles. His eyesight has always been great, which I guess would be something that would get affected right away. I also think that she is hoping it will all settle down on it's own after a couple of spinal taps. The spinal taps can re-set everything and help his spinal fluid to flow correctly, but so far it hasn't, and I am hoping that we don't have to wait so long in between next time! But we will figure it out soon...
You can pray for strength and energy for all of us, as these days are getting long and hard, especially on Jaxon. Another big prayer concern will be when he has his spinal tap, that he can stay calm, and still to be able to make it all the way thru. I know that there are SO many of you praying for us, and thinking of us, we are thankful for each one of you! There is no greater comfort than knowing that so many people are praying!
Jaxon has great friends around him too (who he misses!!). He has had care packages, cards, gifts, and even a whole booklet of jokes from his classmates! I know it means the world to him to see how people care about him :)
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