All in all, Annabelle has had a pretty good weekend - nothing extremely eventful, just more of our usual curveballs to keep mommy and daddy on their toes. I kept the girls entertained mostly to keep my mind from wandering to sad places. Like I mentioned in a previous post, there is no reason for me to worry and be depressed before anyone even gives me a reason to do so. Im trying so hard to smile and enjoy everything going on around me - and please don't get me wrong, I AM enjoying my babies, it's just hard not to worry about the obvious.
Annabelle's temperature hasn't come much higher than 95 all weekend, this afternoon I keep taking it and it's staying in the High 94s / Low 95s. It hasn't moved much, so I am grateful. It's when it moves is when she has problems because it moves so suddenly. Now on the other hand, it seems every time her temperature is around 96, she begins these shaking episodes.
Last night she was running around and started to act funny.. she was tripping and falling all of a sudden. I assumed she was just getting really sleepy and losing her feet beneath her so I scooped her up. She clung snug to my chest and laid her head down.. I braced myself for a temperature fluctuation and held her, analyzing every bit of her warm skin... is it getting cold or hot? Finally, she held me really tight and started to whine - she stopped and then the tremors began. At first they started slowly, but then turned into very hard shaking.. much harder than I've ever seen from her from shivers if she's cold. We were outside this entire time. I didn't exactly know what was going on so I ran inside to start taking her temperature. It was 96. It only lasted for a few minutes.. It would get really intense and then slow down tremendously and then pick up again. This was around 7pm
She went to bed late and I expected and braced myself for another of our usual long nights together. At 1:30am I could hear her moan and start tossing around.. very quickly she began screaming frantically. I curled her up in my arms and held her close.. I wanted her to go back to sleep before she woke up too much. Just then as she relaxed with me next to her, her tiny body started shaking again. Slowly at first but then very hard shaking again just like before. I am starting to feel really bad for her during these spells, she's scared but silent the entire time. She wants to grip me as tight as she can because it's almost as if she can sense they're coming on.. I don't know if something is hurting her, if she's cold and shivering like I've never seen or what is going on. She is conscious the entire time.. not very coherent to the point I would trust to put her down to walk during these times, but she doesn't seem completely out of it as what I would expect a seizure to look like. They're happening every couple hours but like everything else that is going on, it happens without warning. The only thing I cannot relate this to are her fevers. Her temperature is normal during these which is odd. I can't quite tell if they come on during a sudden change because I haven't caught one to begin soon after I have last taken her temp. We will see.
Tomorrow AK is leaving to head out of town and I have a full scheduled ahead for the week. I am taking Annabelle to the pediatrician for another check-up and a physical to get cleared for Tuesday's Brain MRI. Dr. Young also wants to talk to me a bit more about the thought of Mitochondrial Disease. I texted her Saturday about this just as a 'Food for Thought' and she called me immediately. She said, "Ashley, you just really may be onto something woman! I have another patient with Mito and it took us YEARS to diagnose her.. the little girls family is taking out 3rd and 4th Mortgages and flying her all over the country for the best doctors to help treat this disease - it's quite difficult to understand and only a few doctors in the country actually specialize in it, but you're lucky - we actually have an EXCELLENT doctor at MCV that specializes in Mito! That's who my other patient is seeing and I think it's worth a visit to see her even if the MRI does indicate something going on." - So Dr. Young wants to chit-chat about the idea of Mito and hopefully we can get an appointment on the books to begin exploring that possibility. (If you want something to specifically pray for, or pray against... I would ask we pray Annabelle does NOT have Mitochondrial Disease.. that will be even more devastating news for my baby girl. Another invisible, chronic, painful disease with no cure. Please Lord do not let it be Mito!)
After our pediatrician appointment, I need to get the girls fed and back out the door and towards Midlothian for Mady's first Swim Lesson! She's so excited and I can't wait to see how much she learns :) Our day begins at 5:30am for both girls tomorrow so I can already see some Red Bull in my immediate future. Here's to prayers and fingers crossed we have an easy night tonight and the entire house gets plenty (MUCH NEEDED) rest! I pray we can get thru the next several days gracefully without daddy at home and the MRI goes smooth. I am always panicked about anesthesia, this will be her third time being anesthetized in 3 months - I think it's harder for me to watch than her to sleep for. I hope this week is easier on Mady than the last several has been and I PRAY we find answers for sweet Annabelle very, very soon. Preferably Tuesday!!
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