Update

It's been busy, in the usual way. The holidays are approaching and Sarah couldn't be happier. She is loving the music, the lights, the advent calendar, the Christmas specials and the shopping. This is the first year that she is really participating. She 'gets' opening presents now. It is not too overwhelming for her. I'm so happy for her.

Backing up to Thanksgiving, Sarah had a great time, for the first time, at my sister's with the family. She was able to join everyone instead of staying in a bedroom watching DVDs. It was wonderful for me and for her. We used her noise-cancelling headphones, which helped muffle some of the loud, unexpected noises and it went well. In past years, the headphones did not help at all.

What makes the difference this year for Sarah? A couple of things. Mainly, she is growing and learning. She is more fully understanding what is going on and because of this she is able to cope better and actually enjoy things. Secondly, I have a better understanding of what Sarah is thinking, all due to the Communicator, Debbie. I spoke of her in a previous post. A little insight goes a very long way. Think what you may, it has been so helpful for us!

Everyone is coming home for Christmas!!!!!!! 'Everyone' means the boys :) Woohoo. So we are preparing, and it is fun. Today Sarah and I head to the local craft store so we can make some Christmas things. There still are cookies to bake, lasagna to make, packages to wrap and a tree to lug in and decorate. Right now it's leaning against the chimney outside. 

And now some recent pics:

This N That

Hi! I have been remiss and badly need to update. Yes, I know this. So here I am. First off, this is John and I on our way to a friend's wedding. Isn't John looking awesome? I loved having such a handsome escort :)

Speaking of weddings, Jimmy is getting married next year! Here he is with his future bride, Lauryn. And so on we go :)

And as for Miss Sarah, she is struggling in the weight department right now. I am trying to get her back on track. She sees her GI doc in february, so I have a few months to fatten her back up. The word Gtube keeps cropping up, but I resist, until I am sure. Here's a recent photo of the girl!

I got her an American girl Doll for her birthday, Emily. Sarah really enjoys her. She especially likes when I put hats on her. Which is interesting, because Sarah does not like to wear hats herself.

Here we are on our way to Ptown for a visit. Ptown is ahead of me, Truro is behind me. We are always happy there!

Do you see that Sarah has dimples? All my kids have them. I do not :) Just a random fact to share. Speaking of random facts, here are some that I have learned about Sarah in the past six months, that I did not know before.

Sarah's favorite color is yellow.

Sarah does not like the blue bracelet in the picture above. She wants a pink or red one.

Sarah's right elbow hurts sometimes.

Sarah has been cold. She needs a blanket on her legs.

Sarah misses John, a lot.

Sarah likes it when I wear brightly colored shirts.

Sarah loves the sound of bells.

Sarah wants to know when Christmas is coming.

Sarah goes through phases of the music she likes.

50's music has caught her ear recently.

Sarah wants to go to my sister's house and sit at her big table.

Sarah loves the flowers that one of her sitters brings her.

Sarah gets a lot of cankers.

Sarah is proud of her eyes.

Sarah thinks John has pretty eyes.

Sarah would like to spend some time around animals, but not a zoo.

Sarah's right knee has been troublesome as well.

There is more but you get the gist. How do I now know all these little details? Well, from this woman:

Debbie, the communicator.

Hooray for Debbie. She is awesome. She 'visits' with Sarah every few months and then tells me what is on her mind. It really is quite amazing and has been very helpful for me. A little insight goes a long way, that's for sure :)

So that's it for now. I'll be back!

Kyphosis

So Sarah has always had some degree of kyphosis(hunching forward). She also has a curve where the spine twists on itself, like a corkscrew. Neither condition lends itself to surgery, unless really severe. She has had both of these conditions since she was a baby.
At her last x ray, her kyphosis measured at 94 degrees, which would be terrible news if her spine was fixed at that curve.But, it is flexible, meaning it bends and unbends, somewhat.

There are two instances when Sarah's spine straightens as best it can. One is when she is in the stander and the other is when she sleeps on her stomach. So, I snuck in this afternoon when she was taking a nap and snapped a couple of photos.

Here her head is to the right. You can see a little curve. What you now see is fixed. It is as straight as it will go.

In this pic her head is to the left. Same curve, opposite side view. Not TOO bad.

Constrained

Warning: not my usual uplifting post.


I feel very constrained. By Sarah's care and by finances. There are many things I would like to do that go on around here. But I can't. Either Sarah wouldn't be able to tolerate it or I can't afford it. I especially am aware of it at holidays. Everyone is doing fun things and I can't. Or if I do try, it will inconvenience someone else on their holiday, as Sarah will need care. Do you now how long its been since I've seen fireworks? Or swam in the ocean or in a pool? Or been on a boat? Or had fun? I can't even remember. It's really, really hard. 
For instance, just tonight, I see lots of people jogging or walking their dogs or pushing strollers past the house, so I decide to take Sarah out for a walk. Well, she gets upset with the putting on of a sweatshirt, starts crying and I give up. Forget it. We can't even do that.
I want to go to the parade tomorrow. I want to see fireworks. Not gonna happen.

Suck it up Les.

Fitting it all in

From the outside looking in, life is quiet. I go to work and  I take care of Sarah. I look forward to visits from the boys. I feed the cat. I mow the lawn.

From the inside looking out, I just don't have enough time for everything I want to do. I want to work on my family's genealogy. I want to practice the piano(keyboard). These things take time. I am chipping away at them when I have free time. I guess that's the issue. I have very little free time. Keeping this boat afloat takes pretty much everything I have. But now , interestingly, my brain is reaching out. Searching for things IT wants to do, regardless of how busy I am. Ha!

So that's what's going on. I'm going to throw some pictures on here, cause photography is another thing my brain wants to spend time on.

This picture above is the 'after' picture of Sarah's haircut, done at the kitchen table. She certainly has the loop-de-loop curl thing going on.

This last picture is my favorite. Not sure why.

Yes siree, this is my girlie :) I can't believe she will turn 16 in August. She had her first psychic reading this month. It was very interesting. Her favorite color is yellow. Who knew? :)

Reunited

Recently my sister and I had a reunion with our babysitters. Yup, you read that right. With our 3 babysitters from Virginia 40 years ago, that we hadn't seen or even spoken with, in all this time. Forty years!!!  This is what I enjoy about Facebook. Going way back and connecting again. Or not. But we all wanted to. So, they were in New England for a wedding shower for one of their daughters, so we made plans to meet for lunch. Three sisters: Nancy, Virgie, Dottie and also their brother (Buddy)'s wife.

And meet we did. Two hours was not long enough. So much time, so many changes, and yet, they are just the same as I remember. It was so good to see them. It's hard to explain, but spending that time with them brought me back to my true self. The one that I was as a child,  before the stresses and demands and expectations of adulthood come along. Before life experiences and responsibilities color us and mold us. I feel stronger in who I am now, when I am able to revisit the child I was then. Ironic, eh?

And so, the memories! My sister and I were flower girls in Nancy's wedding. Their mother and I had the same birthday. Every year we walked over to their house to watch Rudolph at Christmas time on TV. I remember that they drove a Volkswagon Bug. My sister Ali and I would cram ourselves into the tiny back seat. One time their younger brother, Buddy,  babysat us and we were throwing couch pillows and he got pizza all over the pillows. LOL. On my 10th birthday their mother gave me a book titled 'White Gloves and Party Manners'. I actually might still have it. She also made me a pilgrim costume for something that I had to do in 6th grade. It was purple with a white cap, collar and apron. She mixed meatloaf with her hands. They had a huge black dog, I am thinking a lab/great dane mix? He was named Lincoln, after the guy on the Mod Squad. So many little memories.....every single one being  warm, cozy and good. I remember wanting my mother to look like their mother because, to me, she looked like how a mother 'should' look: greying hair, a little round, shorter. My mother, on the other hand  was tall, slim, brunette and glamorous. Ha!

And that baby I mentioned in this post? The one that I pushed in his carriage and thought I was in heaven? He was Nancy's son, Adam. I loved that baby. He's all grown up now, married with a child of his own.

I am thankful that they were able to make the jaunt to our neck of the woods amidst their own exciting wedding shower plans. We hope to see them again someday.

Back row: Sister Ali, Buddy's wife, Virgie and Dottie. Seated: Nancy and myself. I will treasure this photo.

Sunday Randomness

Hello

Today I cut the lawn. I strongly dislike cutting the lawn, but I love when it is done. Actually, do you know what I dislike even more? Weed whacking. I rarely do it. It never goes well. Something always breaks on that thing. 

Sarah is still recuperating from her trip into Children's this week. I have kept her home every day since and she's just starting to get back to her old self.

I painted her fingernails and toe nails. She liked it, which was funny because she resists anyone touching her hands, she always pulls them away. But not for the nail polish. That, apparently, was just fine.

I don't like to cook. It's too much work and too much to clean up. So, I didn't cook this weekend! I still did a lot of cleaning though. 

I am having trouble figuring out how to work Proloquo2go. It is a communication program on Sarah's IPad. I need to get it going, but have hit a roadblock, or a brain block. I want all the text to be in uppercase, but it isn't happening. Sarah reads uppercase only. Hence, the problem.

Big news!... Sarah has a friend. A little girl who is as captivated by Sarah as Sarah is by her. It goes both ways, which is awesome. She is a relative of one of Sarah's carers. I will call her T. This is the first time Sarah has shown excitement over the presence of another child and there is obvious disappointment if  T is not here. She really likes her. T is very gentle and loves to read Sarah books and do the IPad with her. T talks about Sarah all the time at home and looks forward to her next visit. We are going to set up 'playdates' for them, so they both can look forward to seeing each other. 

I miss the boys the most on Sundays, when the Red Sox are playing on TV and neither of them are here to watch it with me. Boo. Hoo. So I have switched to TCM. I do love the old black and white movies. Love them.

Well, time to get Sarah up from her nap and get dinner ready. She had a good sleep so she will probably be up till 9pm. Ahhh...the life of a teenager.

Getting Down To It

Today Sarah had her yearly appointment with her orthopedic surgeon and also her physiatrist, who does her botox. It's a long ride in, about 1and 3/4 hours. This is long for Sarah, since she cannot shift her weight in the car. But she was game for a road trip. I had planned out her morning, so that when we left the house at 2 pm she had had a bath, a nap and lunch before we hit the road. This was quite a feat since she doesn't wake up for the day until 11 am!

Anyway, off we went. She was freshly scrubbed, wide awake and with a full tummy. 

I don't care for the city. I feel like the Grinch as I think " The noise, noise noise!!!!" And I want to cover my ears. And don't even mention the traffic. Kudos to those who struggle with that twice a day. I cannot imagine...

So we made it in and headed to the xray department, which is where the horror resides for Sarah. Two years ago she was very upset by the process of getting xrays. This is because, according to Sarah :

(yes, you are getting a list)

1. It is cold in there.

2. The clothes must come off

3. The table is very hard.

4. There is a lot of loud clicking as films are put in place

5. Any talking at all leads to loud echoes

6. The way oversized johnnie keeps falling off

7. The xray techs are strangers

8. These strangers are forcing her skeleton into uncomfortable angles

Now, this year, add to the list the fact that we are 15 years old and we have a teenage attitude, we have opinions, we don't miss a trick.

You probably get the idea. Suffice it to say, there was a LOT of noise coming from my girl. And I am sure it made it all the way out to the waiting room where other children could hear her distress. Sarah can be very loud when she has a point to make, you know. Those poor kids. Listening to Sarah must have scared them to no end :(

After the 5th xray was taken of hips and spine, I ended the session by saying "That's enough. If Dr. S needs more information, he's going to have to feel it with his hands". And we were done. Sarah was fried. Fortunately, these xrays are done only once every 2 years. Yay for that!

So we met with the Docs and I held my breath waiting to hear if the spine had further curving and if the hips are in place. And we had good news. The spine still only has a 13 degree curve and the hips are right where they need to be. 

Woohoo.

We ate dinner at the hospital and wouldn't you know, right in the middle of it, the restaurant burned something and suddenly the fire alarm started sounding and over the paging system a CODE RED was announced numerous times. OMG. Poor Sarah. The noise, the noise, the noise!! Seriously, I couldn't believe it. I also was surprised at how long it took the fire department to show up at Children's Hospital, as it wasn't a drill.

So we made it through that mess and finally got ourselves into the car and rolled into our driveway around 8:30. Sarah was in bed by nine but had a hard time settling, which was very understandable. She thought about crying a few times as I tucked her in, which is hard for me to see, but I know sometimes it's the only way she has to let it all out so she can relax. However, she decided she didn't need to cry, I sang to her for a  little while(don't laugh, she likes it, haha) and she quieted down. I shut the door and a few minutes later I heard her singing before she fell asleep.

I know you don't need all these little details, but part of the purpose of this blog is for my memories.

And now a couple of pics. This is Sarah as we headed out for the day.

 

And this is Sarah at the end of the day.

Totally done.

And so on we go. Tomorrow will be better, my girl. I love you so.

Why

Why is it so easy for me to raise a "severely disabled" child? I mean, why am I not stressed at all by the fact that my only girl requires so much care? Why am I not driven to get to the bottom of her diagnosis? Why does her 'condition' never depress me? Why am I so happy to have her home with me and to be responsible for her schooling? Why am I never sad or overwhelmed with her needs?

Why does it just not bother me?

What is wrong with me? What is going on? Seriously. I am asking.

If Sarah is sick, of course, I am concerned to the point of unrelenting nausea and ridiculous obsession, but I was that way with the boys too, so that's not disability related. That's just me and my neuroses.

So, I have some theories, I don't know if any of them hold the key to my contentment. But here they are:

1. I have always loved dolls. My mom gave me my last babydoll when I was 13. I remember the day. And I remember her telling me it was the last one.

2. I love babies. Simple as that. My most favorite thing in the whole world is a newborn. I cried in 2nd grade when I spelled the word baby wrong on a test. No kidding. I started babysitting at age 10. I pushed a baby in his carriage up and down the street. I was in heaven and felt that I was the luckiest girl in the world. Just exactly like how I feel now caring for Sarah. No difference.

3. Sarah has good doctors, which means, they listen to me and let me run the show. Ha! So absolutely no stress there.

4. Online support groups. Any question that I put out there receives many informed, intelligent, caring  answers from the best source of all- other parents. It's invaluable! They are invaluable.

5. A school system that is comfortable enough to go outside the box for Sarah and give her an educational program that 'no other child in the District has' and is the precise one that I want for her.  Hooray for that.

6. I am not a fighter. I don't have it in me.

7. I am a homebody. I like to be home. And so does Sarah.

8. I have a family that fully accepts and enjoys Sarah just as she is. She's not the only unusual member of the bunch :)

10. My personal outlook, meaning, this is how I happen to see life, in a nutshell :  It is what it is supposed to be. Life is not random. We are here to learn, challenges are here to teach. I tend to look on the bright side. I savor the little things and focus on the big picture, the one beyond this particular life. I don't want to get all spiritual on you so I'll stop here, lol.

11. I believe a successful life is not measured by what you can or cannot physically do. It's what you give that counts and there are many ways to do this.

12. Sarah has brought a dimension to her brothers that otherwise would not exist. So thankful for that.

13. Sarah is a medically stable child. Meaning she is not 'ill'. She doesn't have seizures or heart troubles or respiratory issues that require hospitalizations. Sure, she can't do anything for herself, but she is 'healthy', so far.



So maybe, throwing all these thing together in a pot explains my passivity about the whole thing. Well, maybe passivity is the wrong word .Because I am not passive. I am actively happy. So there, take that, you disability, you!

Yes, I know I am strange.

An exciting find

Every single morning we have a problem. It is a big problem. A large tangled problem that for the past decade I have been unable to solve without her tears.

Until now!

The solution is The Wet Brush. I ordered it off of Amazon and it's the best under-10-dollar-item I have ever bought. I'm not getting paid to say this. It is just a fact. Somehow, I can run this magic brush through her hair and it becomes smooth. I don't know where the snarls go. I don't know how it happens, but I am so grateful that she doesn't cry any more.

Sarah's 'quality of life' is better, and I am all for that!

The Girl in the Pink Dress

I came across this story recently and it reminded me so much of my Sarah, with her curved back (spinal kyphosis). So I will share it with you.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

There was this little girl sitting by herself in the park.

Everyone passed by her and never stopped to see why she looked so sad.

Dressed in a worn pink dress, barefoot and dirty, the girl just sat and watched the people go by.  She never tried to speak. She never said a word.

Many people passed by her, but no one would stop.

The next day I decided to go back to the park in curiosity to see If the little girl would still be there. Yes, she was there, right in the very spot where she was Yesterday, and still with the same sad look in her eyes. Today I was to make my own move and walk over to the little girl.

For as we all know, a park full of strange people is not a place for young children to play alone. As I got closer I could see the back of the little girl’s dress. It was grotesquely shaped.

I figured that was the reason people just passed by and made no Effort to speak to her. Deformities are a low blow to our society and, heaven forbid if you make a step toward assisting someone who is different.

As I got closer, the little girl lowered her eyes slightly to Avoid my intent stare. As I approached her, I could see the shape of her back more clearly. She was grotesquely shaped in a humped over form.

I smiled to let her know it was OK; I was there to help, to talk.

I sat down beside her and opened with a simple, ‘Hello’

The little girl acted shocked, and stammered a ‘hi ‘; after a long stare into my eyes. I smiled and she shyly smiled back. We talked until darkness fell and the park was completely empty.
I asked the girl why she was so sad.

The little girl looked at me with a sad face said, ‘Because, I’m Different…’

I immediately said, ‘That you are!’; and smiled.

The little girl acted even sadder and said, ‘I know.’ 

‘Little girl,’ I said, ‘you remind me of an angel, sweet and innocent.’

She looked at me and smiled, then slowly she got to her feet and Said, ‘Really?’

‘Yes, you’re like a little Guardian Angel sent to watch over all the people walking by.’

She nodded her head yes, and smiled.

With that she opened the back of her pink dress and allowed her Wings to spread, then she said ‘I am.’

‘I’m your Guardian Angel,’ with a twinkle in her eye.

I was speechless — sure I was seeing things.

She said,  ‘For once you thought of someone other than yourself.  My job here is done’..

I got to my feet and said, ‘Wait, why did no one stop to help an Angel?’

She looked at me, smiled, and said, ‘You’re the only one that could see me,’ and then she was gone.

And with that, my life was changed dramatically. So, when you think you’re all you have, remember, your angel is Always watching over you.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Now I know where Sarah keeps her wings.

Smile

Happy Easter! Love, Sarah

Good Times

Last weekend I took a trip to Washington, DC to see Jimmy.

This looks like such a simple statement, but it is not. Just the preparations alone to get out the door took a full week. Because of Sarah.

I didn't really feel like I was going anywhere until I was actually in the seat of the plane and we were taking off. You know... that moment when the plane is barreling down the runway and your back is forced against your seat? That is when it all began, for me.

And what a weekend it was. I met Jimmy's friends, his boss, and fellow employees. I watched him coach his baseball team, we ate in a a multitude of restaurants and I got a glimpse of his soon-to-be, new living quarters.

I experienced how he drives (fast... like his mama), how he eats (not much..like his mama) and what he likes to talk about. I heard about future plans and dreams . It was very enlightening. In a lot of ways, as he gets older, I see more and more of myself in him. I didn't expect that. I find it intriguing. He is still changing.

He has a very busy daily life. He does a lot of driving from place to place. He is a hard worker, is full of energy and has wonderful friends. He loves his job, loves coaching and is excited for his upcoming move.

It is everything that I had hoped for him when he was so small. I always, always  knew he had very large wings to unfold and that he would live his life large and enthusiastically, given the chance. And he is getting that chance. I am so thankful.

And Sarah? How did she fare with my being gone all weekend? Just fine, thanks to a wonderful caretaker!

Here are a few pictures from DC:

                                                                     My sister Ali

                                                                            I love lions

And the answer is....

Pityriasis Rosea. That's what Sarah has. It was finally diagnosed by a doc who knew what it was at first glance. Hooray for that. There is no known cause, maybe viral, but not contagious. It can last weeks and then it disappears. There is no treatment. It may be itchy. She is covered with it everywhere, except for her face, lower legs and forearms.
So other than occasional antihistamine and skin moisturizer, I am ignoring it and we are going on about our days. I can say it was very stressful not knowing what the heck was going on and trying all sorts of things to get to the source. Very weird.
Today was in the 70s here in Massachusetts. It was a glorious day for theraputic riding and then a meal at the local seafood place. She had haddock, scallops and french fries-followed by rootbeer. Then home for a bath, hair wash and bed. A nice, full day for Sarah.
We have an interesting development in the TV department. Sarah started out as a very little girl only interested in watching 3 or 4 DVDs. She watched them over and over and over and over. They were Kidsongs DVDs. She never was interested in anything on TV. Only gradually over the years could I add a new music DVD. And even then she would only watch a bit of it before tuning it out. Maybe a few months later she would increase the minutes of the new DVD until finally she would watch the whole thing. It took a loooong time to add new DVDs to her collection, as you can imagine. She needed repetition, repetition.
Well, within the past 6 months, I have noticed that a couple of things are of interest to her on TV. New things THAT SHE HAS NEVER SEEN BEFORE. The first one is Teen Mom. She loves that show. She really enjoys listening to the girls talk about their troubles, and if you listen to the show, there is music often playing in the background. So we watch that and sometimes I tape an episode for her to watch later. The second new thing she is interested in is Nick Jr. I can get her up, plop her in front of the TV with that station on and she will watch whatever is on while I make her breakfast. This is huge! Everything on that station is new to her and she likes it! I pretty much cannot believe it. She had come such a long way and I am so happy for her. This development opens up a whole new world.

Between this and the Ipad, I am surprised her brain is not on overload, but it isn't! She's taking it all in. In this photo, taken today, Sarah is sitting in her Convaid Scout. The footrests are flipped up because I just got her off a horse. I love, love this chair. I got the thicker comfort seat rather that the canvas sling seat that it comes with and it makes all the difference. The larger wheels give a smoother ride and the tilt of the seat keeps her pelvis tucked back, rather than her sliding forward, off the seat.  It has hand brakes too which is nice. I just wanted to share what I am using these days to cart her around.

The end.

No matter

No matter what I do, what medication I give her, what creams I put on it, or where I put her to sleep-nothing I do matters to this rash. It is doing whatever it wants, whenever it wants, however it wants.

Dermatologist appointment in one week. Until then, I experiment and pretty much drive myself crazy. Part of me is tempted to say " oh well, she has a rash, so what, big deal" and get on with my fun and fascinating life. Ha!

Not gonna happen. It just bothers me. So she's sleeping in with me now to see if the new memory foam mattress on her bed is the problem. So far, no improvement. Of course not!

When I peruse Google for images of various rashes, what she has most closely resembles hives. They look like hives. However, hives generally move around, come and go, usually each hive only lasting 24 hours in one spot. Her spots stay right where they are until they finally flatten (takes days) and fade away, leaving a faint light brown mark until that also eventually fades.

My suggestion to you is, that if you are sick of reading about this rash, then ignore this site for at least a month because this is what's on my OCD mind and I'm going to go round and round about it until it's over. Sorry about that.

Over. That's the goal I am aiming for. All over and back to normalcy around here.

I just had a thought. The one thing we haven't tried yet is an antibiotic......OK, I'm going to shut up now.

You're welcome.

Rash Rant

What is up with this rash she has?  It was just about gone and then it exploded all over again. She is having a fit because it seems like I am putting one cream or another on her all the time. And now there are so many areas, she actually gets cold from the cream. I really am at my wits end right about now. The only places it isn't are her face, arms and lower legs.
So I dragged her to the pediatrician again this cold, windy Sunday morning. I had forgotten that  I had only a tiny amount of gas in the car, but figured I'd stop on my way there. Well, that station was closed and there were no more on the way to the doctor's. I practically panicked thinking of us running out of gas with Sarah sick (yes, she caught my cold).
We made it and saw the on-call doc. She thinks it's a fungus and put Sarah on Diflucan(a pill you take once a week for 3 weeks). I have to stop the 2 creams I was using and start a different one. Oh, happy day! If it's not improved in the next week, then off to the dermatologist we go. It should be all over her face by then, I'm thinking...
And my cold, she does have it, but not as bad as I have it. I wondered why that happened until I was brushing her teeth last night and it hurt her when I brushed the lower right side. I got my trusty flashlight out and peered in, and low and behold, a huge canker there. The virus went to a canker instead of the full-blown cold. The poor kid: a rash (does it hurt, itch? who knows?), a cold and a sore canker.

::sigh::

To be continued.

Almost Spring

Sarah has a new Ipad. She loves it. Her hand use is not that great as she usually grabs for the right edge of it, rather than hitting the middle of the screen. I see her intention to go for the screen but those fingers of hers extend over to the edge. So between reading her eye gaze and redirecting her fingers, we are making progress. The most interesting thing is the way she leans in toward the screen with her little round spectacles on, almost nose to screen, and examines every inch of the display. I think, with the way the Ipad is lit, she can really see the images. Much better than what she sees on paper. And the girl is looking. And studying. It's wonderful. Her brain is getting information that she has never had access to before, through her eyes.

Sarah's new bed is here! It has been an adjustment for all, but I knew that would happen. The bottom line is, she cannot fall out. She is safe. Both side railings can flip down, which is a good thing, being that the bed is a full size and I have to go to the opposite side from where I put her in to pull her to the center of the bed. She's been very good about the change.

Sarah has had a mysterious rash that started on her belly. A wound culture was done that showed nothing. I gave her an antihistamine to see if that would help. Nope. So I am left with applying creams. Two of them. Twice a day for each. One to cover a bacterial rash and one to cover a fungal rash. One of them is working because the rash is ever-so-slowly starting to fade and has stopped spreading. Weird.

The boys are good, both working and making their way through their 20s. Both happy and very busy. I am looking forward to a trip to DC to see Jimmy soon. I don't travel much because Sarah's care must be arranged to the very last detail while I am gone. It's a little nerve-wracking to say the least, for me. But I'm going for it this time!

Look at this beauty!

This is Wilawan, from Thailand. She is one of my Compassion Kids. She sent me this photo of herself, dancing at her recent Christmas celebration. Her letters are chatty and she draws lovely pictures. I would say, that between all 6 children, I receive about 2 letters a week. I have become the mailman stalker! Ha! The kids are great. They live with much poverty but are so hopeful.

Right now, I am sick with a head cold and fever. This is day 4. I am a crazy person trying to keep Sarah germ-free. This kind of bug would be a nightmare for her. So there are gloves, masks and lots of alcohol on paper towels. Not to mention all the antibacterial hand wash. Today the windows are going to be flung open and the wild wind outside can blow through this place. Will all this work? Not sure, but worth a try.

So that's my update, more to come.