Nathan has been busy this month. Although he has still not completely recovered from his chronic virus/infections, he has miraculously warded off another bout with pneumonia.
This month, Nathan finally got his wheelchair, van ramp, and easylock system. Don’t let the name fool you, though. Easy it is NOT! If we had chosen to spend $20K, we would have an easier solution, but we just can’t go there yet. Instead, we went the manual, low cost route. Our new “outing” process entails putting Nathan in his wheelchair, pulling the 5 ft / 25lb ramp out of the van, unfolding it, placing it carefully in the slider door, pushing Nathan & his 45lb wheelchair up (backwards) into the van, and jiggling him until the wheelchair locks into the floor mounted contraption. Then we still must pivot him around forward, fold up the 25lb ramp and slide it back in the van. The aluminum ramp then shakes, rattles, and rolls the entire time we drive.
And when we get to our destination, we do the entire process in reverse, assuming we can find a van accessible handicap parking spot. The thing that makes it worthwhile (besides the obvious) is that Nathan usually smiles and coos when he is going up and down the ramp backwards - it's his own private roller coaster. And in the long run, it is easier than cramming him backwards into a baby car seat. I’ll personally be happier about it when the bruises and cuts on my legs fade away.
Nathan got a new neurologist and workup this month. This doc is a Hoosier who graduated from the IU School of Medicine, so he must be good, right? He specializes in epilepsy and is much more aggressive with treatment than his last neurologist. The timing was right as we are finally ready to try anything and everything before giving up on westernized medicine for his progressively worsening seizures. This new doc put Nathan in the hospital for a few days to run some tests and try some heavy duty meds. He referred to it as “shocking or resetting the brain”. Unfortunately, his great ideas did not work this time. Although Nathan’s brain wave patterns improved on the meds, it compromised his respiratory system so he could not continue. We left the hospital without a reset, but did get 36+ hours of EEG data showing what type and frequency of seizures he is having. Hundreds of seizures later (not to mention 30,000+ abnormal brain wave spikes), we have learned that he has outgrown infantile spasms. But, as the doc explained, infantile spasms often grow up to become Lennox Gastaut syndrome, the worst type of childhood epilepsy to have. We are not surprised as we were originally told that infantile spasms had the poorest prognosis of all seizure disorders. What does it all mean? Well, we will still never know until Nathan writes his own history. In the meantime, we stopped the seizure meds that Nathan has been on for some time - which are heavily sedating meds. We also started him on 2 new meds – 1 with serious enough side effects that I had to sign several waivers stating that I know this could have life threatening side effects and that we won’t sue. It is too soon to tell if either of these meds will make a difference. It is also too soon for me to come to any conclusions, but after having 3 really rotten, grumpy, non-interactive days, last Thursday Nathan had an amazing day. He was happy, coo’ed, sang, participated in speech therapy and played with a toy fire engine like he has never played with any toy before. We’ve learned not to expect too much, but it really gave us hope to see this side of Nathan again. Unfortunately, since Thursday, he has reverted back to his introspective self and is having a lot more seizures.
The rest of the family is hanging in. There is only one more month of school until Madison’s kindergarten graduation. Zach is trying to learn to crawl. He does not actually crawl or scoot yet, but somehow when you turn your back he gets from one side of the room to the other. He is fascinated with Nathan’s equipment & feeding tube, so we will soon have to fence one of them in so that we don’t have some type of major catastrophe. Everything else is going well. We are looking forward to the start of summer and swim season. Take care!
This month, Nathan finally got his wheelchair, van ramp, and easylock system. Don’t let the name fool you, though. Easy it is NOT! If we had chosen to spend $20K, we would have an easier solution, but we just can’t go there yet. Instead, we went the manual, low cost route. Our new “outing” process entails putting Nathan in his wheelchair, pulling the 5 ft / 25lb ramp out of the van, unfolding it, placing it carefully in the slider door, pushing Nathan & his 45lb wheelchair up (backwards) into the van, and jiggling him until the wheelchair locks into the floor mounted contraption. Then we still must pivot him around forward, fold up the 25lb ramp and slide it back in the van. The aluminum ramp then shakes, rattles, and rolls the entire time we drive.
And when we get to our destination, we do the entire process in reverse, assuming we can find a van accessible handicap parking spot. The thing that makes it worthwhile (besides the obvious) is that Nathan usually smiles and coos when he is going up and down the ramp backwards - it's his own private roller coaster. And in the long run, it is easier than cramming him backwards into a baby car seat. I’ll personally be happier about it when the bruises and cuts on my legs fade away.Nathan got a new neurologist and workup this month. This doc is a Hoosier who graduated from the IU School of Medicine, so he must be good, right? He specializes in epilepsy and is much more aggressive with treatment than his last neurologist. The timing was right as we are finally ready to try anything and everything before giving up on westernized medicine for his progressively worsening seizures. This new doc put Nathan in the hospital for a few days to run some tests and try some heavy duty meds. He referred to it as “shocking or resetting the brain”. Unfortunately, his great ideas did not work this time. Although Nathan’s brain wave patterns improved on the meds, it compromised his respiratory system so he could not continue. We left the hospital without a reset, but did get 36+ hours of EEG data showing what type and frequency of seizures he is having. Hundreds of seizures later (not to mention 30,000+ abnormal brain wave spikes), we have learned that he has outgrown infantile spasms. But, as the doc explained, infantile spasms often grow up to become Lennox Gastaut syndrome, the worst type of childhood epilepsy to have. We are not surprised as we were originally told that infantile spasms had the poorest prognosis of all seizure disorders. What does it all mean? Well, we will still never know until Nathan writes his own history. In the meantime, we stopped the seizure meds that Nathan has been on for some time - which are heavily sedating meds. We also started him on 2 new meds – 1 with serious enough side effects that I had to sign several waivers stating that I know this could have life threatening side effects and that we won’t sue. It is too soon to tell if either of these meds will make a difference. It is also too soon for me to come to any conclusions, but after having 3 really rotten, grumpy, non-interactive days, last Thursday Nathan had an amazing day. He was happy, coo’ed, sang, participated in speech therapy and played with a toy fire engine like he has never played with any toy before. We’ve learned not to expect too much, but it really gave us hope to see this side of Nathan again. Unfortunately, since Thursday, he has reverted back to his introspective self and is having a lot more seizures.
The rest of the family is hanging in. There is only one more month of school until Madison’s kindergarten graduation. Zach is trying to learn to crawl. He does not actually crawl or scoot yet, but somehow when you turn your back he gets from one side of the room to the other. He is fascinated with Nathan’s equipment & feeding tube, so we will soon have to fence one of them in so that we don’t have some type of major catastrophe. Everything else is going well. We are looking forward to the start of summer and swim season. Take care!