Well the kids are doing okay today... Sophie had some rocky moments, but they are both okay for now...
Sophie: Well, we got a good report at Sophie's Neurology appointment today. We got a call that it had been moved from 9:00 to 10:15, so we ended up finally getting to see him around 10:40 and he did a very thorough exam. This man is the best in the world at this disorder supposedly, so to see him give her a work up was mind boggling. I think he checked everything going on with her. It was great. It took a long time, but even though she was very shy at first, she warmed up. He speakes with an accent, so I think it took some getting used to. She said her favorite part was when he took the vibrating tong and put it on her hands and feet and tested how long it would take her to stop feeling it. He asked a ton of questions, and after she got over her initial shyness, I think she did really well. He wrote a bunch of notes and kept having to run out into the hallway to give his notes to someone and they would type it into the computer. He said that today was their first day on a new computer system. Lucky us! It just meant everything took ten times longer than normal, but it was okay. We all desperately want her to get better, so I think her opening up to such a qualified physician was a great thing. You can't put a time limit on that... He said that she is going to continue to have issues with what he is calling a "generalized disautonomic disorder" but that she should get better with the treatment he is prescribing. He also recommended that we increase her iron because she was severely anemic. He has also recommended vitamin D3 because her vitamin D was low and a few other prescriptions. He said that she should continue to improve.
Then.... we went to the lab. Sophie and I waited and waited until her name was called. She has MAJOR needle anxiety and this was no different. They called her name and said to go to the orange room and then someone came in to stick her. She looked for a vein for a long time. Then, she tried to stick my little angels hand. The woman said she was having trouble getting a vein and that the vein wasn't pumping so she called for back up. Three other techs came in. Sophie started hyperventelating, sweating and got really really red and hot. She was scared to death. The one kindof motherly tech started wiping Sophie's face off with a rag. Sophie started to calm down a little bit. Then the bad news...They were only able to get about 8 cc's and they needed more for the tests they wanted to run. Then, they said they needed to go talk to the supervisor to see if they could get the rest with a finger stick. Sophie started to get more upset. She was really having a tough time... They came back, and got the rest of the blood that they needed but not without a few tears. She is so anxious about bloodwork. I do everything I can to comfort her but her anxiety is through the roof. But, with a promise of going to my office for the balance of the day, Sophie did well. After many long hours at the clinic, we finally got to leave and she was happy as a clam sitting at my office credenza, drinking and Diet Dr. Pepper and playing her game. She's such a kind hearted little girl, it's hard for me to see her have to go through this.
As far as Aiden, the Adenoid/Tubes surgery is in just over a week and though I am nervous, I know he will be allright because he is in good hands. Though I know there could be risks, I also know that he's gone through tubes surgery before and he did really well. And, overall it really helped him have less ear infections than before.
WEDDING NEWS!!! Well... Here it is... After planning for a few months now and realizing that waiting 'til June 2012 with all of the trips back and forth, we've decided to move the wedding up! So, we are getting married in December instead. The wedding is going to be beautiful and we are all very much looking forward to it.
We're going to have a small wedding with our closest family and friends. We appreciate in advance, your prayers for a long and happy marriage. We are overjoyed!
Goodnight Friends,
J
I am a Christian mom of two kiddos with medical challenges (Histiocytosis-X, Dysautonomia, Epilepsy, Cerebral Palsy) who wants to share my story to inspire others to keep going and leaning on God while living life fully today! This blog is intended to express that we are living life fully today... one day at a time... no matter what happened yesterday or what will happen tomorrow.
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Showing posts with label Dysautonomia. Show all posts
Showing posts with label Dysautonomia. Show all posts
Wednesday, November 2, 2011
Monday, October 24, 2011
Where's my UMBRELLA??
WHERE'S MY UMBRELLA?? The state of Texas has been going through the worst drought since the sixties, yet in our house, it doesn't seem to stop RAINING. I know that the rain will stop eventually, but it's just hard sometimes to wrap my head around everything that is happening.
Just when I got Sophie out of the hospital, now Aiden's sick again. His tubes that were surgically placed in his ears just over a year ago have dislodged and now he has to have surgery again. Any time an epileptic has surgery, it can be bad. Praying to God for a positive outcome and that he does well. This time, we suspect the surgeon is going to take the Tonsils and Adenoids also. She's the same surgeon that did Sophie's surgery and I do trust her. And I know that this is a blessing, because I know the surgery will help him (as it did last time) but I just want them both to be HEALTHY for ONCE! And, I'd really like to have some BORING days for a change, but that probably won't be the case because both the kids are just going to have to deal with the chronic problems that they both have. Which means, I get to develop thick skin, and some coping mechanisms. It also means that hopefully, throughout all of this, the kids will both be stronger people and I will somehow keep my sanity.
I am pleased to say, Sophie is back at school today! She has a letter of modification saying that she can be excused from PE and she needs to carry a water bottle with her but she's there. She is still REALLY light headed and not feeling well, but she's been told that she's just going to have to cope with it as well as she can, and we see the neurology team at TCH during the first week of November. I have also coached her that she needs to get up SLOWLY when she stands, and not overdo it. We will let you know what the plan is from there. Just so you know, the oncologist said that the Dysautonomia is not connected to the Histiocytosis and was likely present before the Histiocytosis diagnosis. It's just completely and totally frustrating that the episodes keep happening. I can't do anything but sit and watch it happen when it does. Luckily with some of the medications they have prescribed her, her symptoms are lessening a little bit. I pray that will continue. She had a couple of bad sinking spells last night.
Here is some information about Disautonomia:
About this weekend…. I got away to see the Amazing Mr. P, and to clear my head. IT WAS TIME WELL SPENT!!! And, Sophie was at her dad's for the weekend. I did have to take Aiden to the pediatrician Saturday morning, but Adam's mom is a nurse so I thought it would be safe to take Aiden up there and get away from the rain for a little while. I had the time of my life. We witnessed two of his good friends getting married, which was beautiful. He is a Captain in the military and has served in Afghanistan, so it was a powerful service. I got complimented to no end about my amazing man, and what a difference his friends have seen in him since we started dating. I was totally humbled and honored (as I am by him much of the time anyway) by what all they said about him. He's an Amazing guy, and this was all confirmed AGAIN for me this weekend. And, to top it off, his oldest boy was baptized this weekend and I got to see it. I couldn't make it to his daughter's recent baptism because I was laid up from back surgery, but I was honored to be there for JR's baptism. It's an awesome and powerful moment to see a child decide for themselves that they want to invite Christ into their heart. Few things compare.
It always touches me when I am part of these Mountaintop moments in his life. I am so glad I went up to the hill country and got a chance to get away and things look more manageable now. Between doctors visits, medication dosing, and managing the responsibilities of a full time job, it does get overwhelming. I just see bright things on the horizon and I know that all is not lost. And, I know that God must think I'm really strong, because he keeps giving me more than I can handle. He's stretching me pretty thin, but somehow I know it'll be okay. God brought the Amazing Mr. P and I together and has changed us both from the inside out for the past few years, preparing us for each other. I can't wait to be his wife!
Have a great day friends,
J
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