It seemed, over the past few months, that things with Clara had finally sort of settled down. We were coming to grips with her diagnosis, she seemed to making progress with her meds, and we were "maintaining". I got very excited about the possibility of featuring our other children, and featuring some of the fun things we have been doing, on our blog. After all, National Macaroni Day was last week...don't you want to know how we celebrated?? I want to show you, but first, I need to update you all on our sweet girl. As you may know by now, we had a very eventful few days. So many of you have e-mailed and texted and tried to call, (our phone is malfunctioning...again) and I am so very thankful!!!
You may already know that some Mitochondrial Disease kids "wilt" or "crash" from time to time. Mito Mom (you may remember me telling you about her a few months ago) had warned me early on that this could happen with Clara, and from time to time, it has. She will be totally fine one moment, and the next minute, she falls apart. She cries uncontrollably, she goes limp, and cries that everything hurts. Typically, we give her a little Gatorade and all is well. These "crashes" can be very dangerous for Mito kids. It can cause them to digress or even alter the disease completely, making it a much worse situation.
This past weekend, my brother, Thomas, and his girlfriend, Diana, very graciously asked to keep the kids for the night so that Jeff and I could have a special time to celebrate our 15th wedding anniversary. We packed all of their things, including Gatorade, and wrote out our lists of every possible thing (we thought) they needed to know about Clara and the other girls. At least we told them everything we knew to tell them. The girls were so excited to go and spend that time with them and Noah, my sweet little nephew, and they were not disappointed; they had a WONDERFUL time. They watched movies, ate Uncle Thomas's famous, fabulous, better-than-the-theater popcorn, and on Sunday, went swimming after church. When we arrived that evening, however, we got there just in time for a crash. Clara came to the door and I could tell the moment I saw her that something wasn't right. Diana and Thomas could tell something wasn't right. I was greeted at the door with, "Just in time." I would like to stop here and emphasize that Thomas and Diana took WONDERFUL care of our girls and did everything they could possibly have done, so in NO WAY was any of this their fault.
I immediately picked Clara up and she went limp on my shoulder. We offered her Gatorade and she would not even try to drink. Pizza had been ordered and I thought for sure that would perk her up. Nope. She collapsed on the table and finally in Jeff's lap, sound asleep. She even refused an ice cream sandwich....not heard of with our little sweet-toothed girl. We took everyone home and put them to bed, thinking that Clara just needed to sleep it all off. Like I said, we are still learning.
When Clara woke up the following morning, she was drenched with sweat and shaking so badly she could barely stand. I took her straight to the kitchen, where she guzzled about 8-10 ounces of Gatorade and ate a bowl of oatmeal. I really thought we were out of the woods. She rested all morning and seemed to be perking up a bit. At around 3:00, she wanted to go back to sleep. I thought that a little strange, as she does not nap any more, but thought it could nothing but help, considering her level of activity the previous day. She slept over two hours and woke up, once again, drenched in sweat and shaking, only this time, she did not want to drink, nor did she perk right up. She was listless and clingy and still had to be forced to drink. Without boring you with too many more details, I will just say that we did not feel real good putting her back to bed that night, despite how sleepy she was. She had not gone potty since early morning, and had had little to drink. After speaking with Mito Mom once again, I feared we were going to end up in the ER at Scottish Rite. (I could not have made it through that day without Mito-Mom...). I called her pediatrician, who advised me to wake her up every twenty minutes to give her Gatorade, even if by way of a syringe to get it into her. By 2:00 a.m., she had consumed over four ounces, and when I woke her up for that one she cried, "Noooo..." I figured that if she had the energy to balk, and I was about to collapse in the crib with her (...that paints a picture), I felt safe leaving her for the rest of the night. Especially since I knew her pediatrician was the one on call, and we already had a visit scheduled the following morning with her neurologist that had been scheduled already for three months.
She woke up the following morning already looking MUCH better. Then when she realized we were going to see Dr. Berenson, her boyfriend (her words, not mine), she perked up even more. By the time we were in Atlanta, you could barely tell anything had been wrong with her. Dr. Berenson felt like she may have gotten a virus on top of her exhaustion, causing it to be much worse. He also suggested that we feed her more frequent meals (even though blood sugar issues aren't totally what causes these crashes), so we will try that, as well. Hey, it can't hurt, right?
I am going to a conference at Emory next weekend where I will learn a lot more about the cause of these crashes and how to help her more. Obviously, that is not what the whole conference is about, but that is what I am the most interested in right now. I am riding with Mito-Mom, and hopefully I can get her permission to share her true identity and maybe even a picture. :-) She's great!
Please pray that Clara continues to do well as we go into the next few weeks. We are heading to Michigan for Revival Week the second week of August, and we are very concerned about how she will do. That trip always tends to be a little rough on her anyway, so now we are extra nervous.
Please continue to pray, also, for our house to sell, or for other arrangements to be made that would allow us to move to Michigan. In addition, we are still trying to get our newsletter out as soon as possible. Please pray that goes well. If you are not on our mailing list, but would like to be, please e-mail me here. I will need your full address.
As always, thank you for your prayers!! I will share some more fun posts soon!
5 hours ago