So after all the bad.
Not saying that it instantly got better, and I did leave out many of the daily details.
For instance, having to hold Jake up and spoon feed him while we have family dinner, propping him up with pillows so he could sit to watch tv., translating my 4 year olds language to others, even family, carrying burp clothes around because he drools so much and he needed to be wiped as much as a baby, and even transitioning from being potty trained to wearing diapers, to name a few. We are now at a much better place.
A better place thanks to Dr. Hernandez and the other absolutely wonderful and caring people at Cooks Children's.
We still are dealing with many issues.
For example Jake's hair is falling out. The boy that was almost known for his thick white locks, is losing his hair.
He is very impulsive, to say the least. At any time, any object may be hurled at our head.
He stills stumbles around, and his speech is still slurred.
I have a very difficult time noticing it, as I think we have come soooo far. However, when we go to get an eval. at Our Children's House, an awesome organization. They tell me our son not only qualifies for occupational therapy, but also speech therapy and physical therapy.
When did this happen? When did the tables get turned?!
I am the one usually conducting the ARD meetings. Now I am on the other side of the table and instead of me suggesting how I can help other peoples children. They are telling me what they can do for my child!
It is strange. It is hard. And is is even heartbreaking. Let's face it, who thinks they'll ever have a "special ed" child? However, it has made our family so strong, so forgiving, and so open.
For this I am thankful.
Jake is still having seizures. Thankfully, not atonic, or drop seizures, and not myoclonic seizures.
These seizures greatly impacted his quality of day to day life.
But, he is still having the tc's. The seizures I was TERRIFIED of, to say the least. The seizures that I made Matt stay home with me every morning until 10 or 11, because I was petrified of him having them with me. I did not want to stick medicine up his butt, I did not want to see his eyes roll back in his head, and I did not want to pray to God from them to stop before I had to call 911.
I left that to Matt.
Jake is having tc's. I don't know exactly how frequently, as we have been trying to give him space, as well as live a normal married life sleeping in our own bed without little feet and hands.
We still use the monitor, but I simply can't stay awake all night, so I may be missing something.
The past several days, though,Jake has been having a couple tc's a morning.
The doctor. Not the nurse, but the doctor , called Friday evening, as we were on the way out to a Hibachi grill with Matt's parents.
He asked me how things were going? I immediately said the same thing back to him.
How often does the neurologist call you personally? NOT OFTEN!! I was taken back and assumed and was certain he was going to tell me something I did not want to hear and did not have the strength to handle. He did not tell me all this bad news. It was not great news, but not as awful as I expected when I sat myself on the floor and braced myself against the kitchen counter.
He informed me Jake's "levels" were pretty high. His Depokote level should be 50-100., and Jake's were 143. He suggested that maybe this is why I am still witnessing incoordination in Jake and even maybe why his hair is falling out.
The solution? Drop some meds. As scary as this is, I am ready for it. I hate the side effects almost as much as I hate the seizures.
I can deal with the tc's in bed, but I would hate for the drops to comeback. Please pray for this change to be a great one for us.
We are two days going on our decreased med, and so far all is great.
I pray that this stays the same, as school starts tomorrow
Not saying that it instantly got better, and I did leave out many of the daily details.
For instance, having to hold Jake up and spoon feed him while we have family dinner, propping him up with pillows so he could sit to watch tv., translating my 4 year olds language to others, even family, carrying burp clothes around because he drools so much and he needed to be wiped as much as a baby, and even transitioning from being potty trained to wearing diapers, to name a few. We are now at a much better place.
A better place thanks to Dr. Hernandez and the other absolutely wonderful and caring people at Cooks Children's.
We still are dealing with many issues.
For example Jake's hair is falling out. The boy that was almost known for his thick white locks, is losing his hair.
He is very impulsive, to say the least. At any time, any object may be hurled at our head.
He stills stumbles around, and his speech is still slurred.
I have a very difficult time noticing it, as I think we have come soooo far. However, when we go to get an eval. at Our Children's House, an awesome organization. They tell me our son not only qualifies for occupational therapy, but also speech therapy and physical therapy.
When did this happen? When did the tables get turned?!
I am the one usually conducting the ARD meetings. Now I am on the other side of the table and instead of me suggesting how I can help other peoples children. They are telling me what they can do for my child!
It is strange. It is hard. And is is even heartbreaking. Let's face it, who thinks they'll ever have a "special ed" child? However, it has made our family so strong, so forgiving, and so open.
For this I am thankful.
Jake is still having seizures. Thankfully, not atonic, or drop seizures, and not myoclonic seizures.
These seizures greatly impacted his quality of day to day life.
But, he is still having the tc's. The seizures I was TERRIFIED of, to say the least. The seizures that I made Matt stay home with me every morning until 10 or 11, because I was petrified of him having them with me. I did not want to stick medicine up his butt, I did not want to see his eyes roll back in his head, and I did not want to pray to God from them to stop before I had to call 911.
I left that to Matt.
Jake is having tc's. I don't know exactly how frequently, as we have been trying to give him space, as well as live a normal married life sleeping in our own bed without little feet and hands.
We still use the monitor, but I simply can't stay awake all night, so I may be missing something.
The past several days, though,Jake has been having a couple tc's a morning.
The doctor. Not the nurse, but the doctor , called Friday evening, as we were on the way out to a Hibachi grill with Matt's parents.
He asked me how things were going? I immediately said the same thing back to him.
How often does the neurologist call you personally? NOT OFTEN!! I was taken back and assumed and was certain he was going to tell me something I did not want to hear and did not have the strength to handle. He did not tell me all this bad news. It was not great news, but not as awful as I expected when I sat myself on the floor and braced myself against the kitchen counter.
He informed me Jake's "levels" were pretty high. His Depokote level should be 50-100., and Jake's were 143. He suggested that maybe this is why I am still witnessing incoordination in Jake and even maybe why his hair is falling out.
The solution? Drop some meds. As scary as this is, I am ready for it. I hate the side effects almost as much as I hate the seizures.
I can deal with the tc's in bed, but I would hate for the drops to comeback. Please pray for this change to be a great one for us.
We are two days going on our decreased med, and so far all is great.
I pray that this stays the same, as school starts tomorrow
Handsome boy, even with black teeth from all the falls.
He can eat by himself, we didn't know if we would ever see that again!
He can sit by himself! (he usually sits with one hand propped behind him to stablilize himself so he doesn't fall.
To keep a lamp burning , we have to keep putting oil in it.Mother Teresa
God Bless~ Christine
1 comment:
I can even SEE it in his eyes...the progress...what a difference, even since April when I saw him. Beautiful blue eyes, my goodness! I will pray this decrease is for the better...I am so thankful you can speak directly to your Neuro...what a blessing and a bit of peace that must bring. xoxoxo
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