So on Facebook I said I would post about Anna's appointments about 3 days ago. Finally, here I am. It seems like I am running at least 3 days behind in everything these days.
Her first appointment was with the opthamologist. Much to my surprise, he said her eye was actually much better. It was looking worse to me but the measurements they took showed improvement. Her brain is still using that eye so that is good news. We are to not patch anymore for 3 months and then return to the clinic. If her eye is the same or better then we are done. If it is worse then she will need surgery because that means the patch was the only thing helping and she cannot wear a patch forever. I suppose I expected perfection from her eye and we will probably not ever get that. It still turns out frequently but she is able to correct it with a blink so they assure me that is a good sign. I do not really understand but have to trust that they know what they are doing. When it comes to eyes, I know very little.
The next appointment was for an EEG. She actually tolerated it pretty well. I took Carly with us this time and she was so good with Anna and actually seemed to help her stay calm. Anna will do anything for Carly. After the EEG we saw Dr Hernandez, the neurologist. He had not read the EEG yet so he didn't want to change her meds until he could read it. We discussed her behavior problems and he said that what I am describing is quite common in kids with CP and/or epilepsy. He referred us to a neuropsychologist for testing and recommendations about what to do. I called the intake coordinator today but was unable to reach anyone. I will start trying again on Monday. He said that the sooner we address the problems, the better off we will be. He was pretty much disgusted with the level of services Anna is receiving from the school district here. I guess I have just become somewhat complacent. I guess I need to get my "bitch suit" back out of the closet and fight for what she needs. I just know that we are in a small district that just doesn't have the resources or the volume of kids to really give Anna what she needs. And that brings me to my next topic.
Many things are making it glaringly obvious that this town is not where we need to or are supposed to be. I cannot go into all of it right now but one of the main things is the school district. I am not knocking the district. It does have its good points but it just isn't giving my kids what they need. We are looking to possibly move to Denton. They have an amazing special ed program there. It is also the town where I work which will eliminate my 45 mile (one way) commute to and from work. Kenneth would still be within his living requirement for his job. It would give me more time with the kids. There is private therapy there as well. I swore I would never move out of the country and back into the city but it looks like the time has come. All of the reasons we were staying here are pretty much gone. Please pray that once our house is on the market that it will sell quickly. It is a cute 3 bedroom/ 2 bathroom ranch style home on 5 acres. We (when I say we I really mean Kenneth) have done a lot of improvements on the land and the value of an acre has gone up quite a bit so I am hoping we can profit a little. I guess everyone hopes for that. It is not a plan set in stone just yet but probably will be soon.
My sister and her family are in town and we took the kids to NRH2O yesterday. It is a water park in North Richland Hills and I highly recommend it. It was the perfect size park with plenty to do for all sizes of children. You can bring your own food and drinks in or purchase theirs and they do not charge for parking. If you take a group of 10 or more then the tickets are only like $17. We stayed for about 5-6 hours and enjoyed every minute of it with the exception of the temporary closings of the kid area for floating turds. I do not recall as a child ever being kicked out of the kid area for a floating turd. It must be a common occurrence these days because the same thing happened when we were at a water park in Florida last summer. So my question is did kids not poop in the pool back then or were we just swimming along with the turds? Who knows. I was impressed that neither of my kids came home with a sunburn- especially Anna who is so fair complected. I, however, look like I was placed in an oven. I had started a new medicine last week and when it said on the bottle "May cause increased sun sensitivity," they were not kidding. I think this is the worst burn I have ever had.
The new medicine I started is called Plaquenil. Since I had Gabe I have been having joint pains. They have grown increasingly worse and to the point that I have difficulty even moving my toes in the morning due to pain and stiffness. I had been just taking Motrin and making it through but I just knew that this was not normal. I kept hoping it would just go away but it didn't. I finally went to the doctor. He says it is some connective tissue disease, most likely Lupus. I had a feeling this day would come due to strange lab results and some other weird things I have had in the past. He gave me the choice of Plaquenil, steroids, or both. I chose Plaquenil only. I hate steroids and will not use them until I absolutely cannot stand it anymore. He said when I get to that point to just call and he will put me on a 2 week round and see how that does. I am using more Motrin on the days I work and just trying to give the Plaquenil time to work. It can take a month or 2 to start seeing benefit from it. I hope it works. I am not happy about all of this but like I said, I was pretty sure something had been brewing for awhile.
I kept waiting for the day Gabe turned into a "bad baby" but I am finally starting to believe that day just isn't going to come. He is so sweet and is smiling and laughing all of the time. He is up to 11 pounds and I think has about 12 chins. He is sleeping consistently at least 10 hours at night. If all babies were like him then maybe I could understand the octomom. Having a baby like him is just the sweetest thing ever and I would love to always have one around. Don't fret though, this baby factory is closed for good...
No comments:
Post a Comment