The last one

Well, tonight was Sarah's last antibiotic pill. She has been taking low dose antibiotics for 7 years now to prevent urinary tract infections. She had urinary reflux where the urine would go backwards from the bladder back up to the kidneys . This caused lots of infections and put her kidneys at risk. Every year we go to Children's Hospital to see her urologist and have testing to check for the reflux. The urologist, last year, wanted to finally do bladder surgery to stop the reflux, as it seemed it was not going to go away. I asked for "one more year". This January was the deadline. We did the testing and the reflux was GONE. Well, not apparent on that particular day anyway.....so the urologist said to slowly wean her off the antibiotics and we will see what happens. I have been weaning her down slowly and tonight was THE LAST DOSE after 7 years, after taking an antibiotic pill EVERY NIGHT for SEVEN years, this would be 84 months or 2520 days, that means 2520 pills! I am praying that she stays infection free. Praying that the reflux is truly gone. In celebration we had take-out from Seafood Sam's-yum.

These pics are: Taking the last pill(woohoo) and the 2 antibiotic pill bottles tucked safely away in the med cabinet-hopefully never to use again :)

The City Trip

I am so NOT a city person. I hate traffic, horns, road rage, exhaust fumes, highrises, crowds, potholes, germs, parking garages....Sarah and I took a trip into Children's Hospital Boston to see her orthopedic docs. I dread the trip but love the hospital. And it reminds me every time I drive in there why I would never live in the "city". I know some people love it and would never consider living anywhere else. My mom loved it. Lived and worked right in the heart of it. Knew every street, shortcut, store. It is just a big mass of confusion to me. Every time I drive in I think of her...loving it. I prefer green. Grass. Winding roads. Horses. The beach. Land. Lots of land. Think space. Think Ireland. That's it. That's for me.

Anyway, here's Sarah waiting for her orthopedic surgeon. These are not fun appointments. She knows it-I talk to her about it beforehand, prepare her. She whines a little bit. Anticipating the discomfort. Part of the routine for a child with Cerebral Palsy. In he comes with his interns in tow, a very nice teddy-bear type of MD. He bends her and stretches her as far as she will go and measures angles. On her belly, on her back. Bend Sarah...a little bit farther....it's tough for her but she hangs in there. Eyes wide. I whisper in her ear to reassure her as he pushes and prods. Let me examine those hips, see if they are remaining in those sockets after your surgery. Bring your knees up Sarah...a bit farther...Let's see how you take steps. I lift her down to the floor and we move forward. The surgeon explains to the interns why she steps the way she does. Why she turns awkwardly the way she does. Why she moves stiffly the way she does. What to do. What more can we do. Sit Sarah. Sit up straight Sarah. Pushes on her spine. Does she help feed herself, they ask? No. Does she move herself around the house in any way? No. Does she stand in a stander every day? Yes. How long? One-two hours a day. Good. Seizures? No. She is reading? Wow.... They look at her with different eyes all of a sudden.... I feel proud of my girl. Final verdict-she looks good overall. More botox to that left hamstring every 6-8 months for the next couple of years. Keep her horseback riding. Keep teaching her communication. As he leaves the room he says with a smile-"Her progess in communication is more important than anything I can do for her." I appreciate his honesty.

We make the long trek home. She's such a good girl. Listening to Celine Dione in the back seat. Singing and chirping. Watching out the window for the Sagamore Bridge for then she knows we are almost home. Giggling when we turn onto our own street and delighted when I turn the car off. Yeah. Woohoo. Back home.

The last snow

We had the last snow(and practically only) of the year I am sure recently. I took some pictures for sentimental reasons as we are moving this summer. It was the last snow while living in this house. I have lived here 14 years-the longest I have ever lived in one place. I moved from PA to MA at the age of 2, from MA to VA at the age of 6, from VA to MA at the age of 12, from home to college, from college to NY, from NY to MA after Jimmy was born, and within MA a couple of times until I landed here when Jimmy was 8 and John was 4. And here we stayed. Best move I ever made. But now it's time for a new chapter. John heads off to college. I need a place where Sarah's bedroom is on the first floor. Priorities are shifting. I have to be sure wherever I move that Sarah is close to a horseback riding program. And I can get her into the house. And around the house.

But in the meantime I am coming to grips with the thought of leaving the place where the boys grew up, all the memories, all the events........so here's just a couple of pictures-one of the last snow, another of the wall on which I measured the growth of my 3 kids and their 3 cousins over 14 years and their handprints done 5 years ago. :sigh:

Here we are (were)

While organizing some papers I came across this photo of me and Kathy taken in college. We had already earned our RNs and were in the fall of our senior year at Curry College. We lived in Milton Hall and this particular evening we were headed out to a dance. I can't even remember where that was being held. Anyway, we look so young.....I'm thinking this was about 1981. Twenty-six years ago--well, we are still really great friends with kids roughly the same age. We live in the same town. My oldest was born on Kathy's wedding day. Our second sons were born a week apart. Both our moms have since died. Our dads live on. Kathy's brother and my sister both live in town as well. It's all good.

Jimmy is flying!

Jimmy has gone to Colorado for spring break. He is skiing. He is new at this. He LOVES it out there. He's staying with 2 friends. We are 'beach' people. Jimmy surfs and golfs. He can sail. He grew up on/in the ocean. Jumping off the boardwalk. Watching fireworks over the water on the 4th. Listening to the foghorn, driving thru fog. Hopping the ferry to nearby islands. Driving down to the water to watch the the waves during a storm. This is what he knows. This is who he is. Feet forever in the sand. Flipflops. Lobster and steamed clams. Bonfires on the beach.
So now he is experiencing the mountains. He loves them, loves skiing. It is a whole new environment. Another slice of life. He said the best thing is that when you do a "face plant" in the snow you warm up in 45 seconds. It is 70 degrees out there right now. Spring skiing. His ankles are sore, his face is sunburnt and he's having a blast. Woohoo.

Spelling it out

I want to spell out to anyone new reading this blog exactly where Sarah's development is at the age of ten. It can be hard to tell by looking at pictures :) So just to give you an idea...Sarah can stand with a lot of assist. She can initiate steps. She has no standing/kneeling balance. Her left leg is very tight and weak so she cannot weight-bear much on it. She can sit. But she cannot get herself to the sitting position from lying down. She can roll. She cannot crawl. She rarely uses her left hand. Her right hand is pretty good but she cannot isolate the 'pointer' finger to activate buttons/toys. She must use her whole hand. Her trunk tone is low so she slouches forward when she sits and tends to lean to the right. She does not have scoliosis. Yet.
She does not speak. She makes vowel sounds. She has a great belly laugh. She cannot chew but can bite a piece off a sandwich or french fry :) She does not have seizures. Yet. She is very nearsighted and wears contacts or glasses. She is considered legally blind. Her hearing is excellent. She has some autistic features.
Sarah is a good learner. She is reading and learning sentence structure. She observes and listens at all times, like a sponge. I use flashcards to teach her. She does not forget what was previously taught. She has huge sensory defensiveness in the areas of touch, light and sound. She tires easily, requiring 2 'rest periods' a day. She goes to bed at 6pm and sleeps through till 7 am :)
Sarah is 'full care' in every way. She must be fed, dressed and bathed. She has a wheelchair, a stander, a trip-trap chair and a bath chair. There is ONE kind of gait trainer that is appropriate for her but it has been discontinued so I must find a used one......
I guess that's mostly it in a nutshell, except for 'school'. I teach her at home. A teacher comes to the house twice a month to brainstorm with me on my teaching sessions with Sarah. Twice a week Sarah goes to OT. Twice a week she has Theraputic Horseback Riding in the good weather. Sarah loves outings to the mall and restaurants. She enjoys car rides and music. And more music. Music. Music. Music. And bed. She loves her bed :)

And So On it goes

We are doing well. In the lull before the storm, so to speak. A busy spring/summer is ahead so I will use this quiet time to get organized. In my head, anyway...
Sarah. My soft place to land. Pure joy and sweetness. Innocence and love. My dessert. I must have done something wonderful in a previous life to be given Sarah in this one. I feel honored and chosen. It is interesting that science can find no "reason" for Sarah's uniqueness. She has no diagnosis, no apparent prenatal or genetic distinctions. Textbook pregnancy. Simple delivery. Beautiful newborn with the most gorgeous hair. Wonderful and happy personality. And yet here she is in her full glory. I am blessed. Apparently, the scientific community is not to be privy to her secret. And as such, the focus is meant to be on her being, her present, her future...not her past. Not on the 'why' but on the 'who'. We are not to be distracted with a diagnosis/cause. That is clearly unimportant. That is a waste of time as far as Sarah is concerned. What is important is that she is here. She loves, she learns, she delights, she teaches, she grows in all ways. And we, her family, are the lucky recipients.

Talking

It has become clear that Sarah understands everything that I tell her. It took me almost 11 years to figure this out, but hey, when you have a kid who can't speak, can barely move, and can't see too well---it's hard to tell. So I am giving myself a break. Anyway, she is quite the little LISTENER. And that is how she learns. So now I have to keep talking, narrating, elaborating...she needs information and descriptions. Like a blind child. But don't ask her to touch anything to learn about it....she hates to touch things, even if you help her. So it's all listening.
So today I "talked" to her all the way home from the mall. Now this is about a 20 minute ride and let me tell you, it is not easy to constantly describe and inform for 20 minutes straight without back and forth conversation. It is entirely a new way of thinking. And I spelled out the "obvious" to her, for instance, I told her that she was sitting in the "back seat"-she thought that phrase was hilarious. I talked about the darkness coming outside, using my blinker, turning left and right, driving fast and then slow, the highway, stopsigns, side streets, exits, police cars...you get the idea. She loved it. She was totally engaged and adding her little squeals and giggles along the way. It really was very interesting to see her response. She's like a little sponge absorbing everything I throw her way.
John has always said that I talked to myself too much....well then this might work out fine as long as I direct myself to Sarah. People won't think I am crazy, or will they?

I will bore you for sure but I can't help it. The boys are all grown up and I miss those chubby-bubby days, so i posted a few oldies

This would be my sis, Ali, and John at his christening (yes, I KNOW she's lovely, but we are concentrating on the kids here....if you don't mind)

They don't get any cuter than this snow bunny (John)

This is Jimmy one year old

And this is Jimmy one day old

Wow!

Here is the moon, a total eclipse last night. It somehow makes me feel very small. There is so much more out there.

Best Hair

Well, John's senior year is rolling right along...today he was informed that he won the senior superlative of "Best Hair". I have to agree-his hair is quite eye-catching. He has always had very short hair and he told me a few months ago that all his life he has wanted to have long hair so he decided he might as well do it senior year. Who knew these things?