Hello dear ones! I have a prayer request to share with you before I send the post I'm working on with pictures. . .
I'm not sure if you would remember the bizarre history of what we called "unwell bouts" for lack of anything else to call them! About 8 months after her brain injury, these mysterious cyclical unwell bouts started and they plagued Hope for the next 1 1/2 years. They were severe at times, so much so, that we would have to cancel everything and stay home holding her in our arms for hours at a time to help her get through them. We talked to many doctors about them, and nothing was ever able to be determined as to their cause or treatment and so it was just something she had to go through and we tried to help her through them the best we could. You can read more about her history with these by clicking on the tag, "Unwell Bouts," on the home page.
When they gradually dissipated and eventually stopped, we were so thankful! Hope has had a little over a year without them, and they have now returned. Thankfully, they are not anywhere close to the severity of the first several months. . . these were horrible, and left us literally running out of people's homes with a screaming tormented child. Hope is not there as she has learned to cope with the symptoms, to communicate, and to even push through at times. We have learned how to support her through them, as well.
For about the past two months, Hope has been having the cyclical unwell bouts again, just like clockwork! She alternates every week. . . one bad week, followed by one good week, and then back to another bad week, and so on. She definitely copes better, and can at times even push through the symptoms, but it is very hard on her. It is also hard on our family schedule, leading to more unpredictability which is always a struggle in a busy and blessed family and ministry life. Her school attendance and thus schoolwork definitely takes a hit, and her ability to do her best and concentrate is greatly affected. Now rather than for back pain, she is missing school for these unwell bouts, usually around 2 days of school on her bad weeks.
You're probably wondering what the symptoms comprise these unwell bouts. . . it's a long list and varies a bit, but typically. . .
*Little or no appetite (her longest fast was for 10 days at its worst!)
*Various aches and pains such as a sore neck or bladder pain after voiding
*Ringing in her ears
*Vertigo or dizziness
*Temperature fluctuations but typically red faced and quite warm to touch but no fever
*Sensory overload (she is easily overwhelmed by noise, activity, concentration, etc.)
*More emotional or grumpy or moody or irritable (can be just one or a combination of)
*Involuntary jerks in her right arm (these can be severe and very limiting and even painful)
Seizures of course is the scariest one for all of us! Hope had not had a seizure since in hospital for the infection of her pump removal site May 2014 (which we think was related to a dose of Benadryl). Prior to that, her last seizure was Aug 2013, almost two years ago. Hope has had two seizures now since these unwell bouts restarted. The first one was close to the return of the unwell bouts, early May. She just had the second one last night. What is interesting is that Hope does not remember any of the many seizures that she has had in the past. However, now she does remember the seizures she is having! That is good, and it is also hard, because now she fears them. Hope has had many different kinds of seizures since her brain injury, and varying lengths. . . most likely because of how severe her brain injury was and the origin of the seizures being throughout her brain (rather than a single focus) and deep within the brain. So deep that they have never been able to capture a seizure on ECG to understand her seizure origins. Our girlie has always been a puzzle! Again, her past history of seizures can be seen by clicking on the tag, "Seizures," on the home page.
Hope has had brutal seizures where she goes vacant and even stops breathing, lasting for over 5 minutes! We are praising God that so far her seizures have not been like those! The ones that she is having now have some similarities to past ones, but would be a "new" type of seizure. These ones have been about 3 mins long. She is fully aware and even able to speak during them. They are very painful, mostly in her head and arms. She cries during them and screams for help. Her eyes will fix in the top right corner and she knows this is happening. Her right arm will become very stiff and jerk violently. Her left arm will stay loose but slowly rise up above her left shoulder if she is not able to hold her hands together. Hope tries to clasp and hold her hands together, and feels this helps ward off seizures, and makes them less severe. But the one she had last night was so intense that we had to separate her hands for fear that she was going to break her hand with the strength of the muscle contractions and contortions. This upset Hope greatly! However, her sore wrists the next day, helped her to see that we were helping her as we pried her hands apart and each of us held a hand to help her have something to hold onto. Last night was also scary in that she was in the middle of trying to eat some supper when she had the seizure and had a mouthful of food! Super scary for risk of choking. Thankfully she had a prequel mild seizure that alerted us and I had her spit out and swallow the food in her mouth quickly before the more intense seizure began and lasted much longer! Thank you Lord!!!
After her seizures, Hope is exhausted and still has pain in her head and arms. Her right arm is completely useless afterwards and she is not able to even wiggle a finger, let alone move her hand or arm. It slowly comes back after a while of resting.
Hope came home early from school today, as she felt similar symptoms leading up to the seizure last night, and was scared she was going to have another one. This is where her communication comes in sooo handy! She came home and took it easy, doing school work lying in bed in a quiet room, thanks to her dear Educational Assistant, Mrs. Kornelson making a house call! She did not have another seizure and her symptoms slowly improved!!! Her seizures in the past often came in clusters of three at a time, so praising the Lord for His grace in this!!!
We again covet your prayers for healing for Hope's seizures, but also for wisdom in what to do. Hope has not seen her neurologist for about 1 1/2 years, because she is on sabatical. . . hopefully returning in July 2015. So we would love to wait and see her when she returns as she knows Hope well and has been with her since the very early weeks of Hope's brain injury. However, we do not want to wait too long. Hope has grown a ton, and she may need an increase in her seizure medication. . . she has not had one for over 1 1/2 years. But because these seizures are associated with the unwell bouts, in the past, seizure medication did not seem to ever help take them away. If she was in an unwell bout, then her likelihood of having a seizure went way up, regardless of seizure medication or dosing. We don't want to increase her dose needlessly as all these meds have side effects, some of which can be quite debilitating (and we have had much experience with that in Hope's past!). Hope has always been quite sensitive to medications overall. However, she has been on this current seizure medication since Dec 2012 and it has by far, had the least side effects of anything Hope has taken. Again another praise to our gracious God and His mercy!
Prayers for these unwell bouts to just go away again also, but in the case of God's loving plan to continue to sanctify us through struggles, prayer for us to trust Him through the stress of more unpredictability in our lives. And especially prayer for Hope to endure with patience, long suffering, and perseverance to the glory of God.
Thank you so much, dear faithful prayer warriors, for the many many prayers you have already lifted up for our girlie and our family! We have several beautiful prayer blankets and cloths to remind us of the many precious saints that God has burdened to pray for our Hope! You are such an encouragement to us, and we treasure you, dear ones! Look forward to finishing up my next post with pictures, to share with you!!! Praising God for His many mercies that are evident even in the midst of struggle! He is so merciful!!!
You are loved!!!