2 days

until jimmy rolls in....it's been 7 months...get ready for lots of pictures :)

Rarely at a loss

Usually I know how to best meet Sarah's needs. It's instinctual. I usually go with my gut. But now I have a dilemma. Every day I chew it around in my head. What to do. What to do.....

Sarah is scheduled for more Botox and Phenol injections in a month at Children's Hospital Boston. She has had them many times over the years and they are very helpful at relaxing her tight hamstrings. We are trying to hold off on hamstring surgery-something I do not want to have to put her through. She cannot tolerate narcotics for pain control. She has had them surgically lengthened once before when her hip surgery was done. As she has grown, they have tightened again.

What's the big deal with the hamstrings? Because they are tight, they pull on her pelvis and slide her right out of chairs. Because they pull on her pelvis, her pelvis pulls on her spine making it even more rounded (kyphosis). Right now her kyphosis is mostly flexible, meaning it can straighten out. But it could become rigid. Then we are in trouble. That compromises her cardiac and respiratory status. So that's the problem with tight hamstrings. One thing leads to another.....it is uncomfortable for her. Her quality of life is much better when the hamstrings are looser. She feels better.

So back to the Botox/Phenol issue. It only works for about 6 months or so. It needs to be repeated. There is general anesthesia involved. But that is nothing compared to the lengthy anesthesia that would be involved with actual surgery. The problem right now is with the Botox itself. There has been incidences of it causing deaths in children because sometimes it has systemic(overall body) effects. It is a poison, but works well when it stays where it is supposed to-in the muscle. But sometimes it leaks out and travels around the body causing problems-from minor issues to life threatening pnuemonia.

One time many years ago Sarah did have a systemic affect of having trouble swallowing after her injections. It was not so bad that she needed a GTube or anything but every time she swallowed-I would hear a gulp. She never choked or anything like that. Just an odd gulp. It wore off as the botox wore off. It has not happened again. But now, I see that some Docs are going on 'Botox holidays' where they are not giving the botox to the kids right now. Further decisions will be made in the future. Sarah's Doc is not doing this. She is still giving the botox. She feels it will be safe for Sarah as she does not give a full dose for Sarah's weight. I asked her if we could do the Phenol without the botox but she said that couldn't be done.

I don't know what to do. Inject poison into my child to relieve her strain on her hips, legs and spine? Take a chance yet again? Every time I take her she feels so much better for months afterward. But it's a risk. And it is coming around again, the decision. But this time I feel more concerned as I hear that injections are being cancelled around the country. But not here at Children's. At least not yet.

What's the alternative? No injections, the hamstrings continue to tighten, she is more uncomfortable, the back curves and I am looking at surgery for her-either hamstring or spine. Surgery on a child whose pain control is very difficult after surgery, if not impossible. She's either allergic or nontolerant to the narcotics. After her hip surgery, she went home on tylenol. It was horrendous. This is unacceptable to me. I cannot put her through that again. It is inhumane.

This will be my decision. And I am stuck. I wring my hands. I look a little like Sarah this afternoon :)

We are both wringing our hands. I think we will take a walk. That might help.

Summer Fun

Johnny boy surfing it up.

More than meets the eye

So this appears to be a boring, uninteresting picture of Sarah doing 'something'. But in all actuality it has some 'worth mentioning' characteristics. So I am going to mention them for your viewing pleasure.

First of all, you may be wondering what is on her head. It is a wonderful thing called a Haddit. You are supposed to use it when you have 'had it' with your hair. Clever, huh? I ordered it from http://www.rosie.com/ . For me it is just fun, but for Sarah it is the only thing that can hold her hair back other than an elastic. Headbands are generally too large for her smaller head and the ones that do fit are not sturdy enough to hold back her thick, heavy hair. She tends to look down a lot(at her hands) and the headbands fall forward and end up on her nose. The Haddit is the best thing ever. It is stretchy and there is loads of material to do whatever I want. It can wrap around a pony tail or Sarah could wear it as a clingy tube top shirt! Now wouldn't that be a sight-lol. So that's what's holding her hair back.

Next up is the fact that she is working on a small object with both hands. (It happens to be my blood pressure medication and she cannot open it-if she did I would hold a parade in her honor!) The thing about this activity is that up until this summer she has never been able to use her left hand for anything while sitting up. Only lying down. For instance, working with her little stuffed animals while lying down in bed. As soon as I sat her up she would drop the left hand and it would become non-functional. It has taken me a solid year to get her to this point of sitting and still using her left hand. There were many tiny baby steps but we made it! Good for her.

And then there is the fact that she has her glasses on. For some reason, she has been popping her contacts out lately. How she does this, I have no idea as her hand movements are very raw, not seeming precise enough to take out a contact........? They do not fall out of her eyes, that I know for sure! They are not easy to 'unsuction' from her eye. But often at the end of the day when I go to remove them most of the time one of them is missing! And no, she is not collecting them under her eyelids :)

Lastly, is the medic alert bracelet on her left hand. This is just reassurance for me that if we were in a car accident and I could not speak for her, the medics could see the bracelet, read her major issues and then call the included number and get the rest of her health information, drug allergies and emergency contacts. I also have a window sticker for the car so the medics know someone in the car is wearing a bracelet. This was all done online at http://www.medicalert.org/
They have cute bracelets for kids. I can go online and change her health information at any time.

So those are the highlights of this picture. Probably more information than anyone needs to know :).

Birthdays for 3

So we celebrated our summer birthdays... me, my sister and my brother. All one year older. Still going strong. HaHa. We three.

I also added some pics of John and Sarah. It is a good summer for all. Jimmy is due in a week or two. Also a Celine Dion concert for me coming up august 12!!!! SHHHHHH...don't tell Sarah :)

On the inside looking out

It is very rare that a picture of Sarah brings me a pang of sadness. This one does.

Most of the time get-togethers are challenging for Sarah. This picture pretty much sums up the situation. We were at a backyard graduation celebration. Sarah couldn't tolerate the sounds so I had to put the headphones on her to silence it all. She wears sunglasses for the sun. She sits in her chair. She cannot participate. She wants to but can't. It is just too much noise, too much chaos. She is effectively enclosed in a 'box' in the middle of the yard. I took her home. Inclusion isn't for everyone. For her to physically be 'there' I have to wall off her senses. This is what it would be like for her in school. It is what it is. Sometimes it makes me sad for her. Because she would love to be a part. But it's too painful for her.
Sarah uses her hearing for her information. She does not like to touch things and she cannot see very well so her hearing is her primary way of gathering information of what's going on around her. The irony is that her hearing is also extremely sensitive to the point that MANY sounds are painful for her. So the sense she uses to understand her world is also the sense that brings her pain. When I have to put the headphones on I have effectively shut her off from the world as she has no way of making sense of her environment. It really stinks. So we go home.

The 'Sign'

It has been clear since the moment Sarah was born that she was destined for orthodontics. I stuck my pinky finger in her mouth for her to suck on and calm herself. She had the same high-arched palate that we do. Right then, I knew what was ahead for her. All the rest of us have had them with John and myself being the most affected.
She is almost 12 now. We had them put on at age 10. Her teething has been slower than ours, her 6 year molars are just coming in. So I have been waiting. She has one permanent tooth behind the front teeth which will probably have to be pulled. It's not going to be pleasant for her(or me).

There is a local orthodontist who handles special needs kids so we are all set there. I guess I am just not ready for the event and have been putting it off. Yuk.
The teeth pulling. The impressions. The sore lips, gums, teeth. The wax that goes on the sharp places. The work. The worry. I have never done this with a special needs child. I don't know how it is going to go.

Well, today at Sears came the 'sign' I have been waiting for that means it is time to get the ball rolling. In spite of my reluctance. This was it:

A little boy of about 5 years old was looking at Sarah as we waited in line. Sarah was sitting in her wheelchair with her thick glasses on. Staring off in the distance. Not speaking or moving. The child asks his mother: "Mom, why does she have those teeth?" Apparently the teeth are much more obvious to the child than the odd glasses, the wheelchair or her lack of responsiveness. I had to laugh. I must call the orthodontist.

Anticipation

One month. Until Jimmy comes home for his vacation. I am counting the days. Until he is in the same state, then the same town, then the same house as the rest of his family. So long it has been. So overdue. I need my fill. Don't get me wrong...I am well aware that as soon as he lands within the family circle he will be off and running. So much to do, so many to see! He will want to fit it all in. He wouldn't be Jimmy if he didn't. I love his enthusiasm. His spirit. It infuses the house and colors us all. We move into a higher gear. Into Jimmy's faster orbit. Laughter reigns.
For now it is anticipation. The calm before the lightning. The moon before the sun.
The sun. Here comes my sun.