Many of you have been so sweet to check in on Clara these past few days, and for that, I am so very touched and thankful. If you have left us a message and I have not gotten back to you, please forgive me. Its been nuts! In many cases, I know you are wondering what happened.
Our whole week last week was very emotional. Some tough decisions had to be made, some of them I am still sad about. (I will fill you in more of that later.) Thursday night, my brothers wanted to have movie night at my house. I was very excited, because 1) I love, LOVE spending time with them, and 2) I totally needed the distraction from real life for a little while. Thomas, the oldest of my two younger brothers, has wanted me to see Batman Begins and Dark Knight for quite some time. Drew, the younger of the two, brought his 42" screen TV (yes, I am serious), and Thomas, Diana, and Noah came over with lots of goodies to eat. We watched movies until 2 a.m., thinking my children would sleep until 9:00, as usual. But unfortunately, that was not the case.
Clara woke up around 4:30 a.m., soaking wet. This is unusual for her, and many times this is an indicator of things to come. It can also be an indication of a seizure, which is a very common thing for mito kids, but one we have not had to deal with and hope not to. I cleaned her up, Drew changed her sheets, and I put her back to bed...most of this I do not even remember because I was too out of it. Drew, being the younger brother that he is got a little too much pleasure out of watching me walk around like a zombie and talk gibberish.
When Clara woke up the next morning, she did not look "right" to me. She was lethargic, wanted me to hold her, and when I served her breakfast, she just laid her head on the table and sucked her thumb. Many of you remember the bad one she had a few months ago, and what the side-effects can be. I immediately checked her blood sugar and ketones, both confirming what I already suspected...she was crashing. I called mito-Mom who agreed, and recommended I call Dr. Kendall, the mito-specialist we are going to next week, even though we have not been to see her yet. I am so glad I did. She recommended that I take her straight to Scottish Rite. It's one place where they don't look at you like you have four heads when you say, "mitochondrial disease", and they are better equipped to deal with children like Clara. She said that she was not being cavalier about it, but in her 20 years of experience, she has seen too many of these kids go down too far, too fast. She gave me her cell pone number and said to call her if I needed her, but that she was going to go ahead and call the hospital and let them know we were coming.
My brothers, Diana, and Noah were still at my house, and totally saved the day! Thomas and Diana stayed with the girls, while Drew drove me and Clara (very efficiently) to the hospital. They got us back very quickly and the doctor came in after only a few minutes. They ran lots of blood work and started IV fluids to bring her sugar back up. The short of is that we won't know the results of her blood work until our appointment on Wednesday, but within 30 minutes I could tell she was already feeling better. She got around 3 hours of fluids and at the end of that time, she had rosy cheeks and a sense of humor again. The ER doctor was pleased with how she looked at that point, so he sent us home.
Today Clara is tired, but looks and acts so much better. THis has made me a true believer in getting IV fluids to get past a crash. It took weeks last time for her to get back to normal. I am so thankful, thankful for friends and family who loves us so much and are faithful to pray for Clara, thankful for doctors who acted quickly, and a brother who drove quickly, to get Clara taken care of. Thankful for my mother-in-law who dropped everything (she was taking care of her own patients at the time) and met us at the hospital. I am thankful for Thomas and Diana for watching the kids and I am thankful for my parents who took us to dinner last night, knowing I would be too exhausted to cook. More than anything, I am thankful for a God who does not make mistakes. As much as I really don't like what Clara is suffering with....I would actually go as far as to say I hate it....I know God is sovereign. All I can do is pray that this somehow brings Him glory. If He wants to bring himself glory by healing her here on this earth, then halleluia, but if He doesn't, then halleluia, too. Otherwise, it's all a waste. We believe that "all things work together for good to those who love the Lord".
There is song by Mercyme called Bring the Rain that I love. It pretty much sums up the way I feel. Here are the words to the chorus:
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I hope this has made a little bit of sense. We are very tired as we continue to pack, clean, take care of children, and do minor repairs on the house. If you feel led to pray for the Bryant family, please pray for complete health between now and when we move, and for strength and perseverance to be able to get it all done. Additionally, we are still in the middle of something kind of big that needs to be resolved quickly. I can't give you details now, but please pray that God will lay everything in place.
Love you, sweet friends!
Grilled Chicken and Lemon Orzo Salad by Brenda
41 minutes ago