Today I received an email that Maddie had been approved for a worker to come in and stay with Maddie 1 on 1 at daycare for 20 hours a week! This means that Maddie will have adequate someone to provide safety and supervision just for her for most of her day at daycare! We are so happy! I just received our 1st 2 resumes from potential Care Workers. Maddie's Medical Social worker helped us apply for this only a few weeks ago and we already got an answer! We also got a very nice email from the woman who processed it. We really are blessed to have such an unbelievable team for Maddie. She truly has a lot of people who care about her.
This could not have come at a better time. Maddie had the worst day at daycare that she had ever had. I really feel guilty because I had such a busy day at work, I didn't even call to check in on her. I usually do but her headaches have been minimal lately and she was doing well with her eyes. When I went to pick her up, her teacher at daycare was shaking her head and said Maddie had a TERRIBLE day. She had a migraine in the morning and slept for just over an hour. When she woke up she needed to be held for a long time before she could open her eyes...At lunchtime they said that her eyes were so bad that she couldn't really open them to see her food and did not finish. They put her back to sleep after she had another migraine and she slept for OVER 3 hours!!! She barely sleeps that long at night. Again needed a lot of time to open her eyes upon wakening. I wish they would have called me. I was so sad when I saw her and we couldn't leave for a while because her eyes hurt too bad to bring her out of her room (They always keep the lights off when she has her problem in her room.)
I hate this...There is NOTHING I can do and she is in so much pain...on top of this, she cannot have IB Profin until after her eye procedure in just over a week. I can only give her Tylenol which does nothing. When she has bad days I just want to scream for her. It is taking over her life and I can not stand it. She has such great days in between these attacks that I tend to forget how hard it is until it comes back.
I do think that I may have uncovered a real possibility on what she has...I don't know just yet though so I am waiting until after her eye exam. I have done a lot of research since this started...I know more than any parent should know about a million childhood diseases. This time, I am more confident than I have been about other things. I sent the pediatrician an email about my thoughts...I think he is feeling better about her getting the eye exam now than he was before. This thing is called Thygeson's Disease...It is rare but has a lot of similar symptoms Maddie has with her eyes. There is not much on the internet when searching for it and I have found a group on Facebook called Thygeson's who have their stories to read. It all sounds similar to what Maddie is going through. When I look it up on line it says that it causes minimal symptoms in some, and debilitating symptoms in others. Lasts up to 20 plus years and there is no "cure" or known cause. It can cause years of pain with some relief using steroid drops. Yes this would suck...However, the good news would be that once it is gone, it does not cause any long term effects on her eyes.
This is just 1 more thing to add to the list of possibilities but I think it sounds much more probable in my opinion. We will see. Either way I need to figure out a way to help her through these bad days. The bad one's are literally unreal. I think the daycare may call her doctor as well to get some extra advice on what to do for her. I am SO glad that this extra care person got approved to help them at daycare. It may take Maddie months to allow the new person to touch or interact with her, but eventually she will love the extra attention.
So, other than all that Maddie before today, had been having a great few days. The only issues we have been having with her is that she is CONSTANTLY sick with runny nose and cough. Because she throws up easy, whenever she has a couch, she projectile vomits...Tonight was the first no throw up night in 5 nights :)
Oh, that is right...A few nights ago she threw yet another fit and fell hitting the exact spot on the opposite side of her head and had another one of those hitting head seizures. We were so much calmer this time. She convulsed while flat on her face so she hurt her nose a little but is completely fine now (by the time I got to her she had stopped). Paige was SOOO funny...She remembered everything that happened last time and said, "Is Maddie turning green? Do I need to go to Aunt Tiffy's? Is Maddie going to the big Doctor's?" It was good to laugh a little as it does look so scary.
Paige of course is doing super as usual. Going through a real whiney phase but that is about it. We certainly can handle that :) She is also starting to fib a lot...I knew the day would come. I am taking her on a Paige only day soon so we can spend some alone time together. She loves it when we do this...even though she always asks "Where is Maddie" a bunch of times when we are out.
So next week will be a bit busy. Maddie has a pre-anesthesia physical and a team meeting at school to go over a bunch of transition stuff. I will update more soon.
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