A girl can dream...

OK, yesterday we were in Boston at Children's Hospital. John came along and drove us girls back and forth on the long journey. On our way home I spotted my Dream Car ahead of us. My Dream Car! There it is! Catch up to it John! John humored his poor mother who apparently never gets out much and pulled up behind it and followed it most of the way home while I snapped pictures like some hungry child looking at food. Isn't it a thing of beauty?




A black Lincoln Towncar, with black tinted windows. My dream is this car with one addition: It must come with a driver! A big strong driver to take me and Sarah everywhere we love to go. A big strong driver to get the wheelchair out of the trunk and lift Sarah into it. Who will wait for us while we shop, visit, eat or go to appointments. Someone who puts Sarah back in the car and the wheelchair back in the trunk, A big strong driver who sends the message to all: Don't mess with these girls! That's my dream.

So I thoroughly enjoyed looking at this beautiful car all the way home! Someday it will be mine, with the one important addition :)




Doesn't it look lovely going over the Sagamore Bridge to the Cape?

It all comes down to.....

General anesthesia. Again. The fact that she doesn't tolerate it without getting an ileus. So I don't want her to have it. For her health. For her safety. And yet so much could be accomplished with it. But it is bad for her. Risky. Trouble. She goes down like a stack of dominoes. What to do, what to do. Uggh.

Here are the things that could be accomplished if she did not get an ileus with it:

-I could get that huge extra permanent tooth pulled from behind her front teeth so she could finally start orthodontics and rein in those big front teeth.

-I could get the 2 moles removed from her neck which are starting to look 'iffy'.

-I could get botox and phenol injections in her hamstrings which would make her more comfortable sitting.

-I could probably get an official Rett Syndrome diagnosis.

What, You say? How does general anesthesia relate to Rett syndrome? Well, it does in Sarah's case because the Rett specialist I took her to today says he needs a normal MRI to give her the definitive diagnosis. Everything else points to Rett Syndrome, but he needs the clear MRI report. Which needs to be done under...guess what????? Yup, that's right, general anesthesia! Of course it does! Of course!

So there you have it. Clinically she presents as Rett Syndrome. He will even go so far to say that even if she continues testing negative for Rett through DNA bloodwork(more is being done right now) he would go out on a limb and say she has Rett as long as her MRI is normal. Uggh.

She was a good girl today. There was a long interview and exam with the Specialist, bloodwork drawn at the lab and an EKG. She did well. John came with us and was a great help, especially in the interview with the doc about Sarah's developmental history. He remembered things that I had forgotten. Yay! And he did most of the driving! Yay John!

Revisiting an old post

I am bumping up an old post from 2005 that still holds true for us today. Above is a younger Sarah. Here's the post:


We're going to the mall
my girl is so excited
down the bumpy road
she looks out the window
at familiar landmarks
her hands clasped
big smile
in anticipation
chirp, chirp, chirp
we stop
mama's gonna come get you
woohoo
in we go
shiny lights, people walking
music, movement
what fun, fun, fun
legs straight out
in joy
glances from passersby
i meet their eyes
we're fine, we're fine
wanting to reassure them
my girl and I
so lucky i am
wheeling a jewel
they don't know
can't see beyond the wheelchair
the lightness in my step
happiness in our hearts
i feel sorry
it's our secret
i am privileged
what price glory

Apologies, Rett and Baseball

This pic was taken of the 'Missy' after successful botox injections with local anesthesia. Yay! I decided to at least get her in the car and head up to the place and see how it went. I figured I could always turn around and go home. The hard part was getting us out the door at 7 am, since we generally sleep until 9 am! It was a 2 and 1/2 hour ride with all the morning traffic. Sarah did not complain, as usual, good as gold. However, it became challenging for her once we got there because of her acute hearing sensitivity. Doors clicking, babies crying, machines beeping, chairs squeaking,overhead paging...the noise, noise, noise!!!!! And let's add to that people touching her, bloodpressure cuffs, oxygen sat machines attatched to fingers, toes or anywhere else she couldn't shake it off, it was endless but she survived.
Dr. N sprayed the back of her legs with a numbing agent, made about 5 injections in about 40 seconds and we were done. Hooray. And we pretty much went home soon after. Everyone was apologetic about the anesthesia confusion which led me to believe that it had been discussed before we got there. But they still did manage to slip in that this is the only child that has ever been with just a local in that facility. LOL. OK. That's fine:)
After we got home she had a nap, I gave her a warm bath and hair wash, some tylenol and tortellini and she was a happpy camper. She has some little bruises at the injection sites which is typical so I will keep up the tylenol today.

One interesting, inexpected thing did come out of the day. Children's Hospital Boston has a Rett Syndrome Program that is very involved in the research, testing and support of kiddos with Rett. I asked Dr. N if it would be worth it for me to take Sarah in to see the head doctor who is running the Program. She said 'absolutely'. So I called after I got Sarah settled and he just had a cancellation for next Tuesday so we are going in! I have the paperwork showing that all her testing for Rett is negative and will bring that in. But clinically, she is classic. It will be interesting to see what he thinks. I know this is what she has but I want him to eyeball her :) And she may help further their research. You never know.

And what about John? What's he doing? He is loving interning for the Cape Cod Baseball League. Specifically, for the Bourne Braves. And he is helping me with Sarah's care so I can work a wee bit more than usual this summer. Yay for that! Whew! anyway, here is John. A picture which I made him pose for on his way out to the first game. What is it with my boys and baseball? Jimmy is all about the hands-on coaching and teaching and John is about the behind the scenes management/finances. Maybe some day they can team up! I think they'd make a good one :)

What's the big deal?

We are back to the botox issue again. I am so sick of it. It now seems that according to the nurse at the facility where Sarah is getting it done, "99.9% of children get general anesthesia for botox injections". Since when, I'd like to know?

Sarah is scheduled for the injections this coming Wednesday at 10 am. I always schedule mornings for this stuff as Sarah tires out too much. It has been barely on my radar. A quick doctor visit, a little numbing cream, a few pokes in her hamstrings and we are on our way. Usually out to lunch :) Barely a blink of an eye. And very NON-traumatic for Sarah :)

I am having it done at one of the medical facilities rather than the office as the wait was too long for an office appt. Yesterday I got a phone call from a nurse at this medical facility. She proceeds to ask me all the medical questions about Sarah that are necessary for general anesthesia. I begin to get wind of where this is going. So I say, why are you asking me all these questions? She is only having simple botox injections with local numbing cream. The nurse says "No, she's not, she's having general anesthesia." I am stunned. After a moment or two I tell her she is NOT going under general. She proceeds to argue with me. About MY child. And what MY child will be receiving. I tell her in no uncertain terms that Sarah CANNOT have general as it messes with her digestive system and we end up admitted to the hospital. And then she spits out the high percentage thing of kids getting botox with general. Well, I am sorry lady, but it's not happening with this child. Well, now she is all flustered, and if that is so then Sarah will be done at the end of the day after everyone else is done. She tells me THAT is how the anesthesiologists schedule things. Hello??????? Sarah is not a thing and I will cancel and speak to Sarah's doctor.

This conversation was not going at all well. I told her that the doc always did Sarah under local and I was told this time she would use 3 vials of botox. She had the NERVE to say to me "Why would you need to know how many vials?"

I almost hung up on her. It is my kid and if I want to know how much botox is being used I WILL FIND OUT. Sarah's doc has no problem informing me of the plans. We actually discuss them together. Imagine that! I wanted to kick this lady. What a jerk!

Anyway, as I threatened to cancel, she decided she would "talk to anesthesia" and "see what they thought", but most likely they would not be able to accomodate Sarah's needs by seeing her in the morning. I was, like, fine, whatever. Leave me a message as I am on my way in to work.

Good grief.

So I get home from work and here is the upshot of the message this woman left: She spoke to Sarah's doctor(what happened to the anesthesiologists?) and the doc will do her with just a local(surprise!) and will do her in the morning(surprise!). So we are to be there at 9 am. BUT, (and here's her kicker) Sarah will HAVE to be done in the OR and will HAVE to go to the recovery room (meaning vital signs, O2 saturations, EKG leads, johnnies, and lots of anxiety for Sarah). Now, Sarah's doc is really sweet and may override most of this but I cannot tell. It seems like this nurse(or facility) is on some kind of power trip, truthfully. I have a bad taste in my mouth. I have a sense that I may be gathering up Sarah in my arms and heading for the car-leaving AMA(against medical advice). LOL

I am not sure we will be going. Haven't decided. Up in the air. Sometimes the botox doesnt even work. I don't want to make a federal case out of this, but it is just aggravating.

Thanks for listening.

At the end of her message, she said she was going to call me Monday to go over it all again and be sure we are all on the same page. What I'd like to know is-- What is the big deal?

Regrouping

So, it's been awhile since I last posted. There really is no excuse. We are regrouping for the summer. I am working a lot. Sarah is status quo. John is gearing up for his internship this summer and we all hope to see Jimmy in August when he comes home for a visit :)

Sarah is finished with OT at school for the year. She had some good social gains. She is learning to take turns and acknowledge others for "Hi" and "Bye". Easter Seals is coming out to the house shortly to start an evaluation for a communication device for Sarah. She is ready. She has always been so laid back and tolerant of whatever she does, but no more. She wants to communicate. So I have to give her a tool to do so. It ought to be interesting. It will take a while to find the best fit as there are so many devices and software.

Medically, she is getting botox injections next week. Hopefully it will make a dent in those hamstrings. She is now 70 pounds and has not grown any taller in the past 2 years. She is still 4'8" and wears a girls size 8 or 10 jeans. She will be 13 this summer.

She is still riding every Tuesday. Some days she is ready and raring to go and others she is a pile of mush up there on the horse. You never can tell. Lots of variations in her dystonia day to day, which affects how well she can sit and stay on the horse.

In the photos (because no post is fun without pictures!) Sarah is in her jogging stroller. We take walks through the neighborhoods. She loves it and believe it or not, sometimes I actually jog! Hah!