Wednesday, June 29, 2011

Tests and waiting... wee!

There are some things you never get used to admitting. One of the things I have the hardest time talking about with people is that I have something wrong with my body. Most likely I have Multiple Sclerosis. I need one more clinical symptom to get a diagnosis. And since I definitely have lesions on my brain and several of them... there is no way to be cleared of MS really. I have known and so have most people close to me... that I have something wrong with my immune system. So this really isn't a huge surprise to me as I have been experiencing more and more problems with my nervous system and immune system over the past few years. Anyway all that to say that on Monday I had a spinal tap. And really, it wasn't too bad. I saw a very talented and amazing Dr. in Peoria who performed the procedure. He was beyond sweet and caring and talked me through the whole thing. The tech I had was also amazing (my MS dr is in Peoria... which is why the spinal tap was there). I had only heard nightmare stories about Spinal Tap and well I didn't have a nightmare story. I layed flat on my stomach on a table and the dr used xray imaging to mark exactly where he needed to go in. Then he numbed through my back and muscles and then put the needle in to my back. I didn't feel it until it was next to my spine but it was really only kind of a pinching sensation. He moved the table to get me at the best angle so he could retrieve the fluid as quickly as possible. I layed on my back for 24 hrs so I didn't get a massive headache and was good to go by yesterday. My back is a bit sore but it is kind of muscular, like I worked out too much or something. WAY scarier to think about than experience for me. Anyway all that to say that I have to wait 2 weeks for the results to come in. I will either get a confirmed diagnosis or still be in limbo land trying to figure out what is going on with my body. Limbo land sucks by the way. Not a fan of it.

Slobber Rocket is also in limbo land with his hormone stuff. He had blood work done in Feb and it showed that his IGF-1 levels are very low. So we know that something is going on with his hormones but not a diagnosis for him yet. He goes back to see his endocrinologist in Oct (on halloween!) and will have more measurements taken and more bloodwork drawn. Then we will schedule him for what is called a Stim test where they will give him medication to stimulate growth hormone in his body and draw blood several times over the course of 5 hours. Dr. V said that most likely he will start some sort of treatment shortly after his 3rd birthday. Not sure if it will be for IGF deficiency or Growth Hormone Deficiency yet though. Hormones are very complicated. All kids with GHD have secondary IGF deficiency but kids can have primary IGF deficiency and no growth hormone deficiency. IF he has growth hormone deficiency he will have an MRI to make sure his pituitary gland is okay as well. The good/amazing news about hormone issues is that they are very treatable and we can get him treatment to help his body grow to be healthy (including his organs which is my biggest concern). It is pretty fascinating stuff. Right now my boy is doing fabulously though. He is very healthy and smart and now that I have more of an idea of what is going on, I feel much more calm and confident about it all.

Super Muscles has a loose tooth :) Hes been wiggling it a lot. He thinks the tooth fairy should get him a 2 wheel bike for losing his tooth. I informed him that the tooth fairy was mom and dad and that we would give him a dollar for his tooth. lol. He said "no thank you" and I asked why and he said "because I want something COOL!" He makes me laugh often. Hes also kind of arrogant but don't tell him I said that. He was asking me today what the word panic means and I explained it to him and told him that it is better to stay calm and use your brain to solve a problem when one arises. He gave me an example of how his aunt used her brain to solve a problem with her tv (she had the cable guy come fix it). Then he said "My Aunt S is very smart but... I am much smarter". Oh my goodness! Where does he get this stuff from? He is a smart boy though, I will give him that.

Mr. Wonderful is busy being awesome. He got a very prestigious fellowship from NASA to fund his last year in grad school, went to Spain to present some of his research, has had several papers published lately and just got priority A for some observation time on the Very Large Telescope. He is such a hard worker and I am very proud of his accomplishments. Oh and did you catch that it is his LAST year in grad school. This time next year he will be Dr. Mr. Wonderful! And we will be moving out of the midwest. To where, well... I have no idea yet. But we know that it will be an adventure and we are all for adventures.

I am still struggling working through some family relationships. Learning a lot in therapy and through prayer and talking to trusted friends. Sometimes it feels very overwhelming but I know its what is best for me. I have also been doing a lot of fundraising for our trip to Ghana in November and loving every minute. Still in PT twice a week for my knee. Start jogging next week! Praying that I can convince my dr to let me play fall ball but I seriously doubt it. He said no sports for a YEAR. Blargh. I am also trying hard to work on being a more open friend and letting people into my inner circle. Apparently I suck at that ;) I feel like I am getting better. I have made one pretty good friend over the last year (like in real life, that I hang out with) which is a pretty massive improvement for me. This whole learning how to trust people thing is really not easy. I try to remember what my friend L has told me many times... "it took you 24 years to learn these behaviors, its going to take a long time to unlearn them" and then I just keep trying to slowly work on them. Setting boundaries with my family is getting easier but resistance is getting greater. Thankfully I have friends to run my thoughts by first who can tell me if what I think is going to hurt my progress in the long run. Left to my own thoughts I make poor choices with them too often. Amanda, Lora and JD have been absolutely invaluable to me as I work through all of this.  Thanks ladies.

Well I think that is enough of an update for tonight. I am getting a bit blurry eyed. I drove to Indiana to get my big boy today and we had great conversations in the car on the way home but being in the car for several hours made me super sleepy.

1 comment:

Amy said...

That's quite a family update! I had no idea about the MS possibility. Please let me know how I can pray for you specifically through all of this...also with the growth things with SR.
Love you, friend, and am thankful to know what is going on in your life.