Yikes! That title kinda sounds like a horror movie, of which I am NOT a fan! Ha ha! But it'll make sense as you read on. But to begin, thank you so much to the many who prayed for the neurologist appointment that Hope had at the end of August. I was waiting to see what follow up would come of it, and will give you an update now on the appointment as well as her current neurological status. . .
We were very excited for Hope's neurologist to see her again after a long sabbatical (over a year and a half)! This neurologist has been with Hope since January 2012, a month after her brain injury occurred. She was tickled to see how far Hope has continued to recover. She commented on Hope's significantly increased speed of cognitive processing (how fast Hope can think of words, speak words, form thoughts, recall information, etc.). Hope even recited from memory one of her favorite poems that she has written. . . the neurologist was impressed! She also was encouraged to see her gradual (but significant over a year and a half) motor improvement and how well Hope's muscles have tolerated getting rid of the Baclofen pump without any returning spasms or increased dystonia. It was hugely impressive for the doctor and it was music to our ears to hear her say, of her own initiative, that she thinks Hope would benefit from therapy NOW! She admitted that the brain injury team has the goal of following their kids throughout their recovery, but limited funding and the logistics and availability of the program, make the opportunity for therapy at this later point difficult to procure. She said that she would speak to the brain injury team and see if there was any possibilities. This is what I was waiting to hear back regarding.
We did hear back regarding an OT consult for helping Hope with dressing and feeding. However, this referral was put through by Hope's rehab doctor 4 months earlier. So as of present, there has not been any further follow up or therapy available to Hope. But we will continue to work at home, and trust the Lord's timing in all of these things. One thing we know for sure through this journey so far. . . God does not NEED anything to enable His power to heal! : )
I will update you on Hope's current rehab pursuits in a later post where I can go into more detail for you!
The other thing we talked to Hope's neurologist about was the two seizures that Hope had experienced so far this year. . . one in May and one in June. Hope had not had any seizures since summer of last year, so we were discouraged that these two seizures had occurred, but hoped that would be it! Hope's neurologist wanted to increase her seizure med significantly to put her back on the same dose/kg since she has grown so much in the last couple years. Although we are always fans of less is more, especially with medications, we agreed to gradually increase her dose to what the neurologist recommended. Hope has been on this higher dose now for over 6 weeks. However, the seizures have returned in full force.
Hope had a seizure this past weekend unlike any that she has had before. It was scary, especially being so different in nature. This one was stroke like. About 45 minutes before the seizure, we noticed that Hope's speech changed dramatically. . . it was slurred, stuttering, and she was struggling to find the right words. In addition, her eyes were "not right." Hard to explain exactly, but she was not able to track with her eyes as usual and they kept going wonky and trying to stick in the upper corner of her eye. She didn't feel good, and had a headache as well. Prior to this, she had been resting in her bed, and she called us in saying that she felt like she was going to have a seizure. I sat at her bedside as we didn't want her to be alone. Then after 45 minutes of these symptoms, she had a 45 second seizure where she was unable to speak, her eyes were fixed in the top corner of her eye, and the right side of her face was drooped and twitching.
After the seizure, Hope was able to immediately talk normal again and said she felt much better, other than a headache and her face felt numb. It was a relief to confirm that she indeed had a seizure and was not having a stroke.
Sunday and Monday, Hope felt fine, but she did not sleep well on Monday night, including waking up screaming for help because she had a nightmare. Tuesday morning, when arriving at school, she started complaining of some "not feeling well" symptoms, but nothing too major. A couple hours later, her dear EA, Mrs. Kornelson, started communicating with us that Hope was definitely not her usual self and was having a lot of symptoms going on, that continued to worsen. I won't bother to list them all here, as it was a long list, but mostly various pains, flushed red and warm to touch while Hope herself stated she felt cold, extreme sensitivity to noise, dizziness, and then the notorious myoclonic involuntary jerks. Usually the jerks are only in one arm, but this time they were in both arms, and they were quite violent causing her pain in her wrists (she clenches her hands to hold off seizures), shoulder blade, and collarbone.
I picked Hope up early from school and got her home to rest in bed in a dark room, hoping the symptoms would settle without a seizure. However, Hope ended up having a long day. . . one small stroke-like seizure again in the afternoon, and then a longer bigger seizure that involved her whole body in the evening. She seemed better after her bigger seizure in the evening, but within about an hour, her jerks came back until about a half hour after she went to bed, when they finally settled and she was then able to go to sleep.
She has not had any further seizures since the two on Tuesday, and the one on the weekend. However, she is continuing to have some "unwell bout" symptoms much like the ones I described to you from Tuesday, but without the jerks. She had this last week for three of the five days as well, but was able to cope better with the symptoms and didn't have seizures with them. So we continue to be puzzled as to what causes all these symptoms. . . this has been going on since just a few months after bringing Hope home from the hospital. . . now over 3 years ago. Specialists have seen her regarding it, and have no answers for cause or treatment. Thankfully Hope copes with the symptoms better than she once was able to. . . it was literally quite horrific in the past. But it still definitely takes it tole on her, especially when she is doing so well in school and we want to maximize her efforts and abilities there!
After her third seizure, Hope expressed very matter-of-fact, "Boy, three seizures in a week is hard on this girl!" For the most part, she is such a trooper through these times. But occasionally the symptoms include an emotional roller coaster and can cause her to really struggle with despair, anger, loneliness, etc. I praise God for the strength that He gives Hope, Trevor, Gabi, and myself, as well as dear Mrs. Kornelson while at school. It is so hard to watch her suffer and have no answers and no help for her. And it happens often enough that we need to encourage her to push through all that she can, so she doesn't fall behind, while at the same time be sensitive to the struggles she is enduring. . . Mrs. Kornelson does an AMAZING job of this at school! I know the Lord provides the strength and grace for each one of us, because as much as you want to crumble inside . . . the seizures are the worst!. . . He keeps you strong for Hope, and Hope strong for us! God is so good and so faithful. . . He never leaves you nor forsakes you, through it all! I know that!
And on a day like today. . . where the symptoms raged, emotions were all over, and many tears were shed. . . we are reminded of Philippians 1:21 "For me to live is Christ, and to die is gain." Hope has emotions and feelings like any other teenage kid, and there are even times where she struggles with wanting to continue the good fight, because life for her is hard and suffering is a constant companion, whether physical, emotional, loneliness, dependence, or otherwise. She KNOWS that to die is gain. . . to be freed from the daily struggles and limitations of this life, to instead be in the presence of her Saviour with a fully healed body, not to mention no more struggles with sin. . . IT IS GAIN, INDEED!!! But you know, it's on these really tough days that I am reminded of how far God has brought this girlie. . . that she would even respond like "any other teenager!" And I'm also reminded of how those days pale in comparison to the many many days where God fills this child with joy, peace, and hope that abounds. Not because of what life will ever have to offer her, but rather because of what her life can offer for the sake of Jesus Christ, as He uses her to build His Kingdom and bring His name glory. . . TO LIVE IS CHRIST, INDEED! So should it be for me, and for each one of us that claims to be a Christ follower!
We covet your prayers for Hope and this newest wave of seizures and unwell bouts! Please also pray for wisdom for us in the decisions that we will need to make surrounding this resurgence of seizures and symptoms. What a comfort and encouragement to know that so many precious folks continue to lift our girlie and our family up before the Throne of Grace, nearing 4 years later! God is faithful and always worthy of our praise!!!
You are loved, dear ones!!!