Updates on my children
Well, it has been a long time since I’ve written anything here. I am seriously hoping to change that for a variety of reasons that I’ll get into eventually…but not right now.
I’ve got two children, a four-year-old and a two-year-old. They are almost exactly two years apart. Our son is the oldest; he’s smart as a whip, but speech delayed. Our daughter is the baby; she’s also speech delayed and she has seizures. We’ve been through a lot with both, trying to get them caught up and to determine what’s going on with our daughter’s health.
Our son has been in special education for a while now; this is his second year. He’s now talking up a storm and is really coming along very, very well. His teacher is now preparing him to go to non-special education kindergarten next year. We are so thrilled to see how well he is doing!
Our daughter is also doing very well – she has physical, occupational, and speech therapies (each one once a week) and is walking better, paying more attention to people and things around her, and so forth. She also attends a preschool program at a local church. We are working on the process to get her into the same school program that has helped her brother so much, but as with any agency like a public school, there is tons of paperwork, meetings/evaluations/hoops…etc. We think she’s going to start in January…
She continues to have seizures. In fact, they’ve increased recently, which is disturbing to say the least. Her doctors are now taking her off one medication and trying another. I just hope tht it helps her and that she doesn’t suffer from any of the major side effects; the last drug made her incredibly hyperactive, which affected her ability to work with the therapists, focus in preschool, or pay any attention to anyone. It also seems to have dampened her emotional response to things, because now that she is being weaned off of it, she giggles more and responds more normally emotionally overall.
All in all, things are looking up all around. I want more answers in terms of my daughter’s health, but I am learning to be grateful for smaller things as they come…
Ups and downs…
Well my daughter has started a second medicine – Topamax – and at first it seemed to result in MORE seizures, but now that the dosage has increased, she seems to have adjusted and the seizures are less frequent and less…obvious. She’s doing really well now – well, she’s acting more like a typical 2-year-old, which I guess you could say is both GREAT and …well, trying. LOL.
We are really, really pleased at her progress and her brother’s – he just got out of his first year of school and he won an award for “Academic Excellence”!
All in all, things seem to be moving in the right direction…after a long, long struggle!
Great News indeed for our little one…
Well, as of 6/7, Alex is a big, “old” 4-year-old (ok, to him, old is dirty, but you get the meaning…).
On 6/11, Miss Sophie will be 2…sigh…I remember when I could hold and love on both of them…not so much these days.
Sophie had an appointment with the neurologist today. Her sleeping EEG isn’t as good as the doctor would like, but waking is almost normal! YAY! So, she will be starting another medicine day after tomorrow that the doctor says may make the seizures STOP…
I cannot begin to tell you what that would mean to me. Words fail me.
She had lots of seizures this past week…the idea that something could make them stop is unbelievable.
I cannot begin to put into words what this journey is like. I know some of you who read this will understand…but it is unreal.
