Saturday, October 29, 2011

Caroline's Braces..and her apraxia in general

They fit her for them. She is going to get the kind I showed in a previous post...the ankle ones. Her's are going to be black and yellow. She loves bumblebees, so there are going to be bumblebees on them as well. There really was a lot to choose from. They said we should have them in about 3 weeks.

Meanwhile we are also looking at assistance communication devices. It is going to be awhile before she is able to communicate effectively. She knows some ASL, but is unable to do some signs because of her motor delays. Also, most people do not know ASL. We will continue to teach her ASL, but will also get a communication device for her. They are expensive, so we are putting a lot of research into what we want to get. We may end up with an Ipad and the Pro2Go software. There was an amazing story on 60 minutes about using the Ipads for speech. It also showed some remarkable scans of Temple Grandin's brain. (She is an amazing adult who has Autism..there was a movie made about her starring Claire Danes. ) It showed that the speech center of her brain was indeed "wired" differently than that of a "typical" person. I will include the link to the entire segment (it seems to have kind of spun off of a Steve Jobs it is heavy on Apple praise and fanboyism..but the core of the story is very good).

60 Minutes Autism/Ipad/Temple Grandin

Saturday, October 22, 2011

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 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.)

Friday, October 14, 2011

Clean and Organized House

When it comes to some things, I am an organized person. However, when it comes to housework that is not always the case. Having 3 kids only complicates things. As people with kids know..sometimes they can be messy.

I really want my house to be cleaner and more organized than it is. I came across an e book and decided to give it a try. Why don't some of you who think you could use a little more organization join me? Feel free to comment below or blog along on your own blog. It could be fun!!!!

It is called 31 Days to Clean: Having a Martha House the Mary Way . It is written by Sarah Mae. It seems like a good book and I just thought I would keep track of my progress via my blog (at least to an extent). Basically the premise of the book is to give you 2 challenges per day. The Mary Challenge gives you something to do to encourage yourself. The Martha Challenge is a specific cleaning task. I won't be posting everything, because after all I did not write the book..but I will occasionally check in and state how things are going.

Today is Day 1 for me.

My Mary Challenge was to state why I want a clean house. Here is what I came up with:

"I want my husband and children to have a home they can be proud of. A home that provides a place of rest as well as a place of play. I also want to teach my children to value what God has given us and to take care of it, as well as each other." - My Mission Statement :)

The Martha Challenge is to come up with a list of supplies I will need to begin my journey based on the challenges in the book.

One of my goals is to continue to become more "green". One way to do this would be to use less chemicals and more natural ingredients. Thanks to, I have found several recipes for all natural cleaning ingredients. I will also include a list of things can repurpose and use for cleaning.

Things I already have on hand:

Dryer sheets (use to help dust the house)

lemons (cut up and put in a bowl use to loosen grime in the microwave - tip I read several places on the internet and in the book)

Old Tshirts, old wipes container and lavendar soap to make homemade wipes with.

Baking Soda



Hydrogen Peroxide

Things I need to purchase:

4 Sprayer bottles for various cleaning solutions or these cleaning solutions

- Castile Soap
- Lavendar oil
- Tea Tree Oil
- Washing Soda


Rubbing Alcohol

Oh and to get the kids in on the cleaning (with the green cleaning supplies that are nontoxic of course) I will do something like this.

Friday, October 7, 2011

Caroline's MRI and backstory..

Caroline has always been behind developmentally (see previous posts about her for explanation). She never met a milestone on time. For awhile doctors kept telling me she was okay that sometimes this just happens with youngest siblings. They kept saying she will catch up. We always thought there must be something wrong..things just seemed..well off.

Eventually with the help of TEIS she was placed in Occupational and Speech Therapy. In order to receive these the child has to be significantly delayed. She was on the cusp to get Physical Therapy so I was told to have someone reevaluated her in a couple of months and see if she qualifies then. She did. So as soon as all the therapy spots opened up she was allowed in.

I knew that Savannah and I had NF1. I was not suspicious of it in Caroline at all. She had one small VERY VERY FAINT cafe au lait spot on her shoulder, but other than that nothing. I was even told my doctors that she had probably dodged that bullet. All of that changed a couple to three months ago when I noticed several new spots that seemed to have appeared overnight. I got out a pen and marked and counted them. There were 18 to be exact. I knew that the spots together with family history were enough for a diagnosis. I immediately made an appointment with her pediatrician to get a referral to the neurologist. He was baffled too, because he had just examined her a couple of weeks before and had not noticed the spots.

Fast foward about a month and half later when she was able to see the neurologist. He examined her and said that she was developmentally delayed (umm yeah..), hypotonic, and had the CALs. He said that with my history warranted the diagnosis. (YES, I already knew that). He wanted to do a CAT scan just to rule out other problems. I insisted on an MRI because it is highly possible that a CAT scan missed a tumor in Savannah. He said, well we would have to sedate her for that. I said the trade off was worth it considering we would get better images and avoid radiation exposure from the CAT scan (radiation is bad for everyone, but is MUCH MUCH worse for people with NF). He agreed to it, albeit reluctantly and it was (eventually) scheduled for Sept 29th.

We went in on the 29th and she did great. There were no reactions to the anesthesia. She woke up easily and was herself within minutes. I knew something was wrong though by the look on the people's faces. They had that look on their face that health care workers try to hide..the one where you know it is bad news and you can't say anything. They said what I already knew though..which was not to expect a call till sometime next week because the docs can take awhile.

The next day I got a call (Friday). He was not in the office, because it is his day to be in the hospital. I was told to come in on Monday and he would talk to me. I knew it was bad. One - he has never called that quick. I was surprised he even looked at it that quick. And two..when things have been clear the nurse calls and says "Stable". And three - this is an office with a 2-3 month waiting period for appointments usually and she already had one scheduled for 3 weeks from then.

We learned that she has all the usual expected brain changes for NF1. They just watch those yearly. There were also small tumors on various parts of the optic nerves (the nerves in your head that connect your brain to your eyes). They just watch those as well as long as they are not affecting the vision, but usually at 3 month intervals instead of yearly. The big concern is a 1.7 cm tumor that is on her right optic nerve that extends into the chiasm (the place where the nerves enter the brain) and onto the left optic nerve with the right eye being the most affected. This concerned the neurologist so he said he wanted her referred to an oncologist. These tumors are not always cancerous, but can be. Sometimes even if they are not cancerous they are treated as such in order to either reduce or stabalize the tumor and try to perserve vision in at least one eye. St Jude was not able to see her like they do her sister because they do not have an open study for optic gliomas. For that reason she is going to be seen at ETCH. An appointment has been made for October 19th. We will find out more then what the course of action will be.

After typing that I realize how fast things are moving along. We went from healthy but delayed to neurofibromatosis to optic gliomas and meeting with an oncologist all in just a few months time. This is crazy. However, we will deal with things as they come. I will give more information when I have it.

I will also try to post pictures later if I can.