So here we are

I hurt my back lifting Sarah. Owwww. Of course I should have known this was coming. I mean, how many times can you lift almost 70 pounds dead weight and not hurt yourself? On average I lift her 8 times a day. And up until this point it's been fine. Almost 14 years of fine to get here. But now my self is rebelling. Advil and a heating pad are now my companions and it really hurts.
So I will head to work this afternoon and see how that goes. Being that I am a Nurse I don't get much chance to sit, in fact not ever, until the end of my shift, to do paperwork, it is busy, busy, busy. So this ought to be interesting. I definately won't be able to help any of the CNAs lift/move patients, so I feel badly about that.

So, for the short term, thank goodness John is home to do all the lifting. Yay John! But in 2 weeks he starts his fulltime summer job and won't be home much during the day. And then what to do? Well, there is the option of a hoyer lift, but my home is too small to accomodate one, ie hallways and bedroom. I wouldn't be able to move it from one place to another. There are ceiling lifts but I do not own my own home so I cannot install something like that. Although, that would be so awesome! But it's not an option.
And then there's the issue of the car. I am not able to obtain an accessible van so she is a lift in and out of the car. Which I cannot do at the moment so I had to cancel her school tomorrow. Will I have to cancel her riding next week?

And so there it is. Or should I say, here it is.

Ow.

It's a Beautiful Day ♫

Today was an unexpected gift. I was off of work, it was too hot for Sarah to horseback ride and John had no plans. So what to do? Why, take a road trip! So off we took, to the open road on a glorious day, where it was cooler by the sea, on the very tip of the Cape. And John drove so I could take pictures. Woohoo!

Are we unpacked yet?

John came through the door a few days ago. He's home for the summer. And, guess what? He's all unpacked! Yup, he's all done! Finished! Everything is where he wants it!

Let me share with you his idea of being 'unpacked'.



Yes sireee, and now he is doing what he was, apparently, born to do...playing video games and putting in plenty of computer time. While eating cereal out of little boxes.




So I opened one of the suitcases because I just have to start. To. Clean. This. Up. (smile)

And I found 3 cute sticky little shot glasses.




Which I promptly had to fill up with sudsy bubbles. At which point John decided he better get involved and go through his 'stuff' before I pawed through it all, and washed it all.

And before we knew it, we were done. All put away for the summer. Woohoo!

And 3 very clean shot glasses are now sitting over my kitchen sink on the window sill. I think I will fill them with M&Ms.

And now an important announcement

Sarah has reached 70 pounds, folks. Yes, seventy... seven--zero. A full healthy 70 pounds.It has taken months to get here. Five months, in fact. A long stressful slew of time.

For those who aren't up to speed with this issue, here are the facts:

Sarah weighed 71.5 pounds last October. She mysteriously lost weight and ended up at 67.5 pounds in January. She looked too thin. I was a wreck. So began my quest to find the culprit. I added calories. It stopped the downward spiral but I couldn't regain the pounds. I'd get one or two pounds back, only to lose them again. Very frustrating. At one point she went down to 67 pounds.
My goal was just to get her to 70 pounds. If I could get her there I would know we were making progress and I could relax. Well, almost a month ago I decided to put her on Prilosec. I remembered that when she was very young we had tested her for reflux and it came back as mild reflux. No one really paid any attention to it then, but I wondered if it was in any way a contributer to the appetite loss I was seeing now. So, since I had an appointment with her GI doc coming up I decided to do a 'trial' on the med and see what happened. Then I could report the results to him. Well, I saw nothing for 3 weeks. No change. But then something suddenly felt different. She seemed different. She seemed more relaxed. She started eating a bit more at each meal. Just a tiny bit, but it was something.

And now I see it on the scale. Seventy pounds. She may continue to go up and down a bit, but the up is moving up. And I am happy.

Once in a while

...I find it's a good idea to share the extent of Sarah's challenges and what her day-to-day is like. It is hard to tell from looking at her pictures and I don't tend to focus on what Sarah can't do in my posts. However, I know that when I read a blog about a special little one, I like a quick overview of the child, where that child is at, and a feeling for how the parent is coping.

So here's some of the more sobering facts about my sweet girl:

Sarah was a full term, 8.8 pound baby who appeared perfectly healthy. It was only as the months went by that it became apparent she wasn't meeting developmental milestones. No reason has ever been officially found. All tests are normal.

She is considered 'severely disabled'.

Sarah is almost 14. She is the size of a typical 9 year old and seems to be done growing. She's 4'9" and 68 pounds. She is thin, petite. Sarah wears a size 12 toddler shoe.

Sarah needs to be fed. I feed her ground or soft food. She cannot chew. She does not have a gtube, yet. She has always eaten very well, it's just of late that her appetite has dropped off and she will refuse part of her meal. She drinks out of a cup that I hold to her lips.

Sarah is legally blind, but if the words are large enough, she can read them. She has no depth perception. She can discriminate colors.

Sarah's hearing is too acute. Noise bothers her to the extent that it is painful for her.

Sarah can sit in a chair and on a horse. She can stand in a stander. She can roll over. She can take steps if I support her quite a bit under her arms. She cannot stand alone or get herself into a sitting position from lying down. She cannot crawl.

Sarah does not speak. She only makes vowel sounds. She generally does not use her voice for communication (ok, sometimes she will giggle to get my attention :)
The left side of Sarah's body is weaker and tighter.

Sarah can't use her hands for feeding, drinking, dressing, pointing or brushing her teeth. Basically, she can manipulate something in her hands, turn pages of a book, hit a switch and grab a flashcard.

Sarah had bilateral hip surgery at the age of 6. Both hips were pulling out of the sockets. It was a bear of a surgery and recovery but remains successful to this day. Sarah has very tight hamstrings that require botox injections every 9 months so that she can continue to sit. She has mild scoliosis and moderate kyphosis.

She is rarely sick. No respiratory or cardiac troubles. No seizures. Her dystonia is awful though, she has many different types. It is getting worse as she gets older.

She struggles with motility problems, sluggish intestines. It is a battle every day to keep her 'going'. How well she feels each day depends on it. Mirilax twice a day and suppositories are the norm here.

Heat and humidity are the enemy. She cannot cool herself. At all. She turns pale, limp and lethargic. Her body temperature rises. In the summer it is air-conditioning all the time. It is written into her IEP. No fooling around with this.

Sarah has an IEP through the school and has home-based schooling. A teacher comes to the house to teach me and then I teach Sarah. It has worked well for Sarah these past 10 years.

Sarah is a good learner. She likes to learn. The challenge is finding the way to teach her and communicate with her. She has many sight words and reads phonetically. I am looking into an eye-gaze system for her.

Sarah does theraputic riding once a week. It's awesome.

Sarah requires 2 rest periods a day. Time to stretch out and relax, sleep if necessary. It's essential. Sarah generally sleeps straight through 12 hours a night. I adjust her position in the bed a couple of times a night.

Sarah waits for me to get her up from a nap, she waits for me to feed her, she waits for me to suggest we go out in the car, she waits for me to put a dvd on for her, she waits for me to read to her, she waits for me to put her to bed, she waits for me to readjust her when she slides down in her rocking chair, she waits for me to offer her a drink, she waits for me to tell her where we are going, she waits for me to notice she is sick, cold, hot, uncomfortable, tired, hungry.

She is entirely dependent on me in every possible way. Except for breathing. That, she can do!


So that's it, in a nutshell. I do find it stressful to focus on all Sarah's needs, like I have done here. As always, she 'looks awful on paper'. But they are the facts. They have their importance. I obviously deal with them every day, I guess, but I don't think about them. Somehow, it's all irrelevant.

Instead, I see a smiling, happy girl who is the light of my day. It is as simple as that, to me.

He's getting ready!

Words a mom loves to hear from her child while she waits patiently for him to come home from college for the summer:

"I'm starting to pack, mom."

And because he knows I loathe the idea of him bringing home all sorts of useless junk, he added:

"And I threw out a pair of old sneakers. You would be so proud."

Isn't he awesome?

It's Official...

...The Leo...




...that she is...





...is sporting...





...a Lion's Mane.

My Mom

Today is Mother's Day and I wish all you moms out there a Very Happy Day!!!

I'm thinking of my mom today, and every day. She was awesome and I miss her very much. She died of cancer almost ten years ago. Ten years. It's hard to believe so much time has gone by and yet it seems like such a long time since I've been able to pick up the phone and call her.

I remember the last time she called me. It was early Christmas morning and she was calling to say 'Merry Christmas Les". We lived in the next town but she loved to make that phone call. I saw her name on the caller ID and just knew that it was the last time I would see that and also the last time I would hear her wish me a Merry Christmas. One of those moments, I guess.

But today is a day to celebrate her. So I will!

She was the second daughter of 3 children. Her name was Nancy Catherine. She was pretty and tall and brunette. She grew up on the northern coast of Massachusetts. She loved lobster, dressing up and makeup. She was classy and talkative. She was insightful and spiritual. She believed everything happened for a reason and things turned out the way they were supposed to. She loved old movies and the Enquirer and Star magazines. She always hoped for the best. Her favorite flowers were purple lilacs. I always tried to snag her some for Mother's day.

Most of all she loved her children. And her grandchildren. She got to know all of them before she died. I am happy about that. She was a very good mom for me. I was always a mama's girl and I never went through that teenage stage of fighting with my mom. She was always helpful and a good problem solver. She was always right! I accepted that and would laugh about it.

My mom was very young for her age. She had a youthful way about her. My boys said their 'Nannie' was 'cool'. She was always up on the latest fashions and trends. She loved working in the retail clothing industry after we had grown up. She was a stay-at-home mom in the early days. She handled my little-girl fears with gentleness and confidence. I was sick very often and she seemed to know just what to do. She always made me feel better.

I remember her spanking me only once :) My parents had company over one evening and my sister and I kept jumping on our beds, making a racket, even after she told us to stop. She warned us but we kept at it. So that was that.

No matter what decisions I made for my life she was never critical. She was always supportive and encouraging. If they turned out badly, she was there to help me. I was never alone. I never heard 'I told you so'.

As I write this, I am wondering if I am remembering only the good things, which often happens after the fact. But, for me, and I can only speak for myself, she was the best. I am not remembering her through rose colored glasses. I know she was human and had her issues, of course, but as MY MOM, she was awesome. And I know she was proud of me, just the way I was. And it gave me strength. It still does. When I am about to face something difficult, my inner mantra is "I am my mother's daughter'. I want to continue to make her proud. She deserves that.

And now, after all that sappiness:) here are some pictures of her.



These two pictures are me and mom.




And mom with the three of us:




She loved the sun!




Mom and my Jimmy:




And the last picture ever taken of her, with my sister and brother and my sister's three children.



♥ Happy Mother's Day Mom ♥ I love you ♥ I miss you ♥

Yesterday...

...we walked. She got a little tan. For a child with such light skin, she is a 'tanner'. Maybe a little pink at first, but the next day tanned, like the rest of us. Well, except for John. That boy just simply tans. His skin looks very light and his eyes are green but put him out in the sun for any length of time and he just turns brown, like a piece of toast, immediately. It's crazy.

Sarah doesn't get much sun which is a bad thing for the vitamin D situation. I will try a little harder this year to get her out more. Not too much, but enough to give her bones a healthy shot of that all important vitamin.

Yay for kids!

Just a quick post to share a moment.

I was food shopping with Sarah. I push her and pull the cart behind me. We were strolling through the book section. Approaching us from up ahead was a little girl of about 5 years old and her dad. As they walked by us I heard her say "Dad, is that a real kid?" Her dad replied, quietly, "Yes".

And I burst out laughing.

He knew that I had heard her and he was a bit embarrassed, I think, but became even more flustered when he heard me chortling behind him. He turned to look at me and I said to him, "Out of the mouths of children!" and chuckled some more.

He relaxed and had a little laugh as well. And we moved on.

And so I say, Aren't kids the greatest? So curious and honest.

Many adults could learn a few things from their simplicity.

They just want to KNOW.

There's nothing wrong with that in my book.

Oh and here's a picture of a flowering tree in my neighborhood, just because... Isn't it beautiful?

Dusk indoors

The day is over, it's 7:30 pm and we relax. I play with the camera and bump up my ISO setting so I don't have to use a flash. I intensely dislike using a flash, I always have. It's natural light all the way for me. I am aiming for a lens with a wide open aperture capability, but until then this will have to do. So much fun!

Therapy, lunch and sun

Sarah had OT this week on a beautiful day. Warm, but not too hot. Or humid. Or windy. She doesn't do well with heat, humidity or wind. Well, OK, a little wind is acceptable:) Oh, and the bright sunshine is difficult for her but sunglasses have tempered that issue. Very dark sunglasses.
So off we went to her school, which she rarely attends, as she has home-based schooling. But we went anyway for her OT. She has it once a week for 45 minutes.

I think her favorite part is stopping by the gym door after her session and listening to the kids running, screaming and bouncing balls. She can't really see them, but she can hear them. And she carefully listens. She sits very still and peers into the gym. And listens. And I narrate what the kids are doing. And she listens some more. To me and the kids. She is happy.



After a few minutes she is ready to roll down the ramp and get in the car. Because more often than not, we go out for lunch after her therapy. And she loves to eat out. And she knows this is generally part of the program for 'school' days.




So in the car we get and then I drive her around our town for 1/2 hour or so. She loves for me to put down her window so the wind blows a little bit on her face and through her hair. She giggles and shrieks and has a grand old time for herself.
Finally I pull into one of our favorite restaurants and I can pretty much guarantee she will eat a good meal that always ends with coke and french fries.





This made me smile. Sarah can only drink well out of clear plastic cups. Most restaurants have glasses, where the rims are thick or heavy paper cups. They don't work well. But, here, in front of my eyes is a whole pile of cups that are exactly what Sarah needs! It's little things such as this that make my day!







And so, this day was a success.

Today