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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