Injections

Sarah and I traveled to Children's Hospital yesterday at 4:45 am for a 7:30 am appointment in 'day surgery'. She was scheduled for botox/phenol injections in her hamstrings and left foot. She has had this done a few times over the years. The point is to relax those horribly tight hamstrings and left foot. Why are we all concerned about the hamstrings? I mean, really, what's the big deal? Well the tight hamstrings pull on her pelvis which in turn pulls on her spine which gets more 'rounded(slouched)' the tighter the hamstrings get. It's all connected and I do not want any back surgery in her future. So to protect her back we tackle the hamstrings.
These muscles are relentlessly tight. Really, disgustingly tight because that brain of hers TELLS them to tighten. There is nothing wrong with the muscles-just the brain's signals.

So off we went yesterday morning. It is about a half hour procedure done under general anesthesia. As usual, Sarah was cooperative and calm. I follow her stretcher into the OR, put the mask on her face with nitrous oxide and sing to her while they try to start an IV. Sarah is a very difficult stick-meaning it is practically impossible to get a good vein to start an IV. This is written in her chart. Everywhere. She has a little reputation there at Children's because of this. Last time this was done(couple of years ago) it took about 15 minutes of singing before they got an IV in. Everyone had an arm or leg and they were trying all 4 limbs at the same time. She giggles the whole time because of the Nitrous. I was not giggling. I was sweating. Feeling a bit faint. I was about ready to cancel the procedure when her Doc got one in her left foot. This time the anesthesiologist got it in first try!! Wow-I am going to request him next time-lol. We were all impressed in that little OR.

She was done fairly quickly and I went to the recovery room. This time she was really still sleeping and coughing a productive cough and they were suctioning her. When she was little she bounced awake from anesthesia quickly but the older she gets the harder it is for come around and this is the second time the coughing has set in. I am not a fan of the cough. But it is what it is.

They let us go after an hour or so and it was a long ride home for loopy Sarah. She just wanted her bed. And her legs hurt. She is a trooper. She ate a bowl of cereal and drank water. I gave her tylenol for the pain. (She is allergic to the stronger pain meds they usually prescribe). She slept like a stone last night.

Today she is still pale and sleepy, but managed 3 big meals and plenty to drink. She stayed in her pjs all day and is now back in bed for the night. I saw a few smiles late in the afternoon so we are on our way to full recovery. Tomorrow will be better for my girl. She is so sweet I can barely stand it.

Chair and Footprints

It's been a bit busy around here. I am trying to get Sarah's schoolwork organized-ie what else we have to work on this year. Also she is adjusting to a new wheelchair. She tends to lean to her right and this chair has a firm pad on this side to keep her upright. She does not like the feel of this against her ribcage. It is very well padded and positioned correctly-she just DOES NOT WANT IT THERE. She would rather lean. Well, she is going to have to get used to it. I cannot have her getting a fixed curve in her spine because of her stubbornness. I don't think she would enjoy spinal surgery......do you? So I put the support in place 15 minutes at a time.

This morning we had a dusting of snow. I looked out the front window and I see cute little tracks about the size of a rabbit, but I am not sure. They came into our yard from the driveway, circled around a tree and then continued back to the driveway. Hop. Hop. Hop. Or something. something. something.

Celine

Sarah loves Celine Dion. I mean really LOVES Celine. REALLY. It is quite something to watch her reaction when she hears Celine singing. For the past couple of years I have purchased Celine's CDs and Sarah has listened to them while we were driving in the car. Her eyes open wide at the first note Celine sings. As the song gears up she squeals and laughs and generally carries on. Her whole body tightens with excitement, legs sticking straight out in front of her.

Well, this Christmas Celine came out with her first DVD. Her show in Vegas. Well....I purchased it for Christmas and we waited to see Sarah's expression when I put the DVD in Christmas morning. She had never SEEN Celine nor had she ever heard Celine speak. Well....it was an experience for her to say the least. And us. She was silent and still with the first few notes-staring wide-eyed at the large screen in front of her. And then she understood. She was seeing Celine. A loud high shreak was followed by giggles and a variety of other 'Sarah sounds'. Then she was silent. She looked around the room to find me...she wanted me to say "Are you watching Celine?" She found me with her eyes and I uttered the question she was looking for. Her way of answering me was to shreak and laugh all over again. She turned back to Celine on the screen again for a minute or two and then slowly turned her head searching to make eye contact with me again. She did and I repeated the question she so clearly wanted. And she laughed again. This went on for a full hour. On and on.

It was the perfect gift for Sarah. Jimmy suggests I take her to a Celine concert thru Make-a-Wish, with the limo and back-stage meeting. At this point it would be too much noise for her but maybe someday a private little song just for Sarah from Celine.....

This is a little clip taken sometime over the holidays of Sarah and Celine :)

A few random shots

John and then Jim