Updates on Kids ...PT, OT, ST..Oh my...

I looked over my blog and realized it has been a month since I gave any updates. I have just done a feww book reviews since then..which I hope you enjoy. I love reading and think its great that I can get books for free just for telling people about them. Anyways, I decided it was time to update on what is going on with my family. There might even be more than one blog post today.

S updates

S's last MRI revealed no "significant" changes in the size of her brain tumor. They say it is "tight" but it is not growing enough to intervene at this time. They just decided to add another medication to help with the nausea and headaches. It seems to be working, but I am just so tired of more and more medications. She is up to 8 pills a day - 4 in the morning and 4 at night. Although I am proud to say she can now swallow them whole (even all at one time) with a drink!

Back in the summer she was getting too thin. I was worried it was the Daytrana she was on for her severe ADHD. Her doctor at the time kept saying that was not it. He said I was skinny so she was too. There is one problem with that. I have always been skinny. S had always been around the 50-75th percentile. In one year she dropped from the 75th % to the 3rd %. I was more concerned about that drop than anything. So, we switched doctors. The new doc agreed with me that the % drop was not good and took her off Daytrana and put her on Straterra. In the past 6 months she has gained 15 pounds and 3 inches in height. I do not think that is a coincidence. Stimulants (such as Daytrana) have been shown to stunt growth. I think it was stunting her growth. Now, her hyperactivity is not as much under control with the Straterra but it is manageable (as long as you have patience with her). I had rather deal with a little residual hyperactivity than hurt her health.

Her grades have been pretty good. She really struggles with handwriting, but they say the location of the tumor along with her ADHD can cause that. They have also found that a decent percentage of people with neurofibromatosis struggle with handwriting. I never had that problem, so I was unaware of it until I did more research on the disorder. She is in occupational therapy though. She goes 1 hour 1 time a week. 1/3 of the time is spent working on sensory issues (such as her need to crash into everything and seek pressure), 1/3 is spent on increasing her attention span, and 1/3 is spent on handwriting. It seems to be helping, but it is a slow process.

Her next MRI is in March. They are putting a little more time in between. Something new they are doing in the study.

I just worry about her lack of friends sometimes. She still complains that some of the children will not play with her. She says they say she is "weird" or "too loud". She is loud at times, and I have tried to teach her how to know when she is getting too wound up. I just worry she will get incredibly depressed or something. Boys are actually a lot more willing to play with her than girls. However, she says she wants a friend that is a girl. A best friend. I feel so bad to hear her say that. I never lacked for a best friend. In fact, I usually had more than one. I just pray for her that she does find a best friend soon. I hate to think of her missing out on that. I am still in touch with many of the friends I had at her age. I would love for her to find a life long friend, or BFF as the kids say now days.

IE

What can I say about my little scholar. He is such a smart kid. He is getting more social. Eye contact is still not 100% there..but I have taught him how to look at someone's ear or nose so he is looking AT them...but not having to look at their eyes since that "hurts" him (his word). I always get the strangest looks from people when he starts talking. He has this same spill he gives every time we meet someone new. "Hi, I am I (his name) and I am 4 years old. I am almost 5 my birthday is in December. This is C (insert name). She is my little sister. She is 2 almost 3..but she cannot talk. We have a big sister, her name is Sannana (how he says S's name). She is 7 and in school. She talks too much." People then ask me, "How old is he again?". I reply that he is 4 going on 30. They usually say they can see that. :)

If he really likes someone he will go into a long spill about Angry Birds or Star Wars.

His meltdowns have gotten a lot better. He still has some eye and foot ticks though and likes to spin and run around in circles. He has finally figured out how to ride a tricycle though. This is big because he had some motor delays at birth and has had problems with left side neglect. After lots of prayers, therapy and us working with him at home though, this seems to be almost resolved!

C

Her next MRI is on Monday the 19th. We will meet with her oncologist after to talk about what was found. I am a little nervous, but I know that it is in His hands and things will work out as they should. I know that with apraxia things are slow moving and we have to be willing to do things on her time rather than our own.

She is still not saying many words, but she has gotten more vocal. She babbles a lot, it is just hard to understand her and sometimes impossible. She is able to communicate in nonverbal ways though..at least part of the time. We also just got an iPad that we are going to use with her. We put the ProloQuo2go application on it. We are going to use it with her in speech therapy and at home. The goal is not only that she learns to communicate pushing buttons on it, but might learn to emulate some of the speech.

She is now wearing braces on her feet. They are helping with her walking. She can even do a fast walk now..not quite a run (and it looks very clumsy) but she is getting there. She can go up and down stair now..slowly. She does not alternate feet though and has to be reminded to use her left leg.

We also have found out that one of her hips is very tight and one of her hips is very loose which is indicative of possible hip dysplasia.. Both are extremes either way. Her PT has suggested we have an X ray done. The doctor will have to order it. The findings were extreme enough to worry that at some point there might need to be surgical intervention. I am really hoping not. The poor kid is not catching any breaks lately. It worries me though, because

Still, with all they have going on, I know it could always be much much worse. I am just thankful for the health they do have, the fact John has a good job that not only provides us with wonderful insurance, but also the ability for me to be able to stay at home with the kids. They need me and I want to be there for them. I can always work later.

Caroline's Legs and Feet - Possibly Part of her (suspected) Global Apraxia

I want to preface this blog with a notice that I am not complaining. Things could be so much worse than they are. I realize that. I am just using this blog for two things: a kind of therapy for me..to let all this out.. and two: to educate anyone who wants to read it about the disorders my children have. Most all of the things that complicate their lives are poorly understood, even by doctors. Like any good mother would, I want answers. Answers are never found by calmly waiting around and hoping.

To update on the MRI: She has no vision loss at this time so they are just going to do MRIs and eye exams every 3 months. They say the lesions found in her brain are not the cause of her other problems. I am having a hard time excepting that. I just do not see how they cannot be related.

On Wednesday Caroline will be fitted for some braces for her feet. At this time we think that it will only be up to her ankles, but the orthopedist might decide to make them go a little higher. They will fit in her shoes. She is getting them for both feet, but the one for the left foot will be more involved. The goal of the device is to give her some stability and hold the foot upright, while still allowing her to move and try to gain more muscle control of her own. They have also diagnosed her with some mild hip dysplasia, so that together with her hypotonia makes things a little more difficult for her.

This is an example of what it might kind of look like if it is just the ankle one..they actually will cast her feet and then take the casts off and use them as a mold to make the brace.





Below are some pictures of what her legs do. She is laying down in these so you can see how they turn in. (Yes, one of her legs is slightly longer than the other) It is harder to really see when she is moving around unless you can zoom in on the legs and I do not have a video camera that will do that very well. If you were able to see her walk/run though, sometimes she does okay she just looks clumsy. Other times she falls a lot. Other times she just drags the left leg behind her. She has learned to slowly go up small steps while holding onto something, but it not able to do it while alternating feet. She puts one leg at a time on each step. (Each step has both feet on it at some point). She is not able to go down the stairs on her feet, she usually just turns around backwards and crawls down them.





This is not one of my big concerns. I have been assured that PT and OT along with the orthopedics can help her gain the muscle control she needs and walk/run properly. It is just going to take quite a bit longer for her than for her peers. Of course we are going to do everything we can to help her. I would just like some answers as to why this is happening and how to make it go away so everything is not a struggle for her. (Although you would never know she was struggling...she is the happiest kid ever.)