I'm feeling it

Yes, I am feeling it. Frustration, discouragement, weariness, teariness. Worry seems to be my constant companion these days and it is overwhelming at this moment. Sigh. Of course the source of all this discontent is my sweet girl. Suffice it to say that health problems keep cropping up and I can't get ahead of them this spring.
To make a long story short, over the past couple of months she has had a skin infection and sinusitis. She has been unable to put back on the weight she has lost. Her stomach seems upset which may or may not be related to the new med Sinemet she is on for the dystonia. So I have cut that in half. I shall see what tomorrow brings.
But I feel disappointed that I can't get her back on track.
Is there a larger problem going on? Reflux? She sees the GI doc in June. I can move it up to May if I think this should happen. Could there be CNS issues? That thought just about flattens me. I keep telling myself, one step at a time. I can do this. Keep perspective. Do not overreact.
John will be home in 2 days. The timing is perfect. Thank the Lord for that. I need to see him. It really helps. If anyone can set me straight, he can :)

Two days. Two days.

Sarah's Saturday Scrub-a-dub

Dr. visit and Grammy

Sarah's visit with Dr. Khwaja went well. Nothing was revealed by all her testing. Because we can't get an MRI he is reluctant to give her the official Rett Syndrome diagnosis. That's fine with me. We can only do what we can do with her, and avoiding sedation is key for her health. So we discussed her advancing dystonia. The many different types she has and how they are progressing. Have I mentioned how much I despise dystonia?
He wants me to do a trial of Sinemet to see if it helps. She will take it (a pill) twice a day for a month and I should notice changes in that time if it going to be helpful for her. I think it's worth a shot. It is often given for Parkinson's Disease in adults(which is a type of dystonia). So we shall see. I would love for her to have a little relief.
He asked if she has had a muscle biopsy, which she has. It was normal. Of course:)
So she shall see him again in 6 months at which time another EKG will be done as kiddos with Rett often have an abnormal cardiac rhythm and he wants to pick that up if and when it happens in Sarah.

And that was that.




And then we had lunch at the hospital. And then because it was such a pretty day, on the way home we swung by the family cemetary plot. I love cemetaries. This is where my grandparents are buried (on my dad's side). My mom is sort of there too but that's another story for another time :)

Anyway, I never knew my grandfather. He died of a heart attack at age 59 before I was born. But Grammy? I loved my Grammy. She taught me how to skip (around the dining room table). She loved to bring me to visit with all her girlfriends in Provincetown. She brought me to church there too. She used to try and scare me with the vacume:) I loved her Siamese cat 'Choco'. He was always one year older than me. I loved her roses, and her fudge. I loved her house, her kitchen, her yard, her sidewalk. I loved that she couldn't stand back up after sitting down on the rocks at the beach (4th of July fireworks) and she would laugh so hard while trying. I loved that she would stand in her backyard watering her little lawn with a garden hose and her bedroom slippers on. I loved that she had a curtain instead of a door to her bedroom. I loved her hummels. And her spider plants. She laughed a lot. She had dimples. And sarcasm. She missed her husband. She was smart, always doing the NY Times crossword puzzles. She never wore pants. She read a lot of books and wore dressy coats. She loved Ronald Reagan and Vanna White. She flew a large American flag off her little cape house every time family came to visit. She made me feel special.





Me and Grammy coloring eggs




Grammy's 3 grandchildren: me, my brother Jimmy and my sister Alison


Grammy died at the age of 95. I miss her. She spent time with both Jimmy and John, but never knew Sarah. She died a year and a half before Sarah was born. She would have loved having a great-grandaughter. A sweet, blond, curly haired little angel girl. Yes, I wish they could have met.

So Sarah and I visited her grave. It brought back lots of memories. Life just goes too quickly sometimes. I can barely keep up. And I don't want to forget... those things that make me who I am. Because that's where I came from. From those experiences, those people. People who are gone now...Grammy, my mom and Scott. It's good to go back. It gives me strength for the present.




In the coming month there will be bright, colorful daffodils and tulips popping up! It will be pretty ♥

Genetics

So tomorrow we are up bright and early to head into Children's Hospital Boston to see Dr. Khwaja. He is the Rett Syndrome specialist and on the forefront of clinical trials and research in this country. His personality is a bit odd but he knows his Rett 'stuff' in a DNA sort of way. So in we go. He met Sarah over a year ago and ran her through a lot of blood and urine studies. As far as I am aware, nothing glaring presented itself and her DNA continues to evade any official answer for her uniqueness.
We will make a day of it. The weather will be glorious and we will go out for lunch after the appointment. I had to take the day off of work to take her in so I am going to make the best of it :) She will have fun!

Back to the pediatrician

Well, it was an interesting visit to the doctor's for Sarah. First of all, she threw a complete all out tantrum when we entered his office and there was no stopping her. Shaking her fist, hitching herself out of the wheelchair and shrieking at the top of her lungs. LOL. They wisked her to an examining room and I shut the door and waited for the storm to pass. After a couple of minutes she settled down, we read a book and then in came the nurse to 'take her temmperature', Well...one look at her and Sarah started the drama all over again. The nurse literally turned around and hurried out of the room, shutting the door behind her. LOL. This child was not having any of this today.
So a few minutes later in comes the doc. Surprisingly, Sarah allowed the intrusion and listened to our conversation. Which went on for quite a while as this doc loves to chat about all sorts of things :) and Sarah loves to listen.

A couple of things came up:

- the antihistamine I was giving her for her cold could have been the reason her appetite has increased while sick.
- he wasn't too concerned about her weight, he thought she looked good.
- he was concerned about her 'irritability' LOL. I reassured him that she is just angry to be at the doctor's and that day-to-day she is quite pleasant and happy, not irritable at all.(yeah right, he is thinking)
- this led to the 'brain MRI' discussion that I have with various docs over the years. Everyone is curious as to the structure of her brain, except for me. But as usual, it was decided to wait as any sedation causes an ileus and I certainly don't want to go there, unless I absolutely have to.
-Amoxicillin prescription for sinus infection.
-Ear drops

Once the exam began there was lots of screaming which did not stop until I got her into the car and shut the door. Good lord. What a racket she made. As soon as we hit the open road she was all smiles, singing and giggling. Grrrr.

Fun, fun (she says sarcastically)

This is odd

So something weird is going on with Sarah. She has been sick all week. And she is also eating like crazy! I have been lamenting for a while now about her lousy appetite and the resulting weight loss and my efforts to get some pounds back on her. And suddenly she is starving. And eating like she used to. Full, big meals. While she is sick! Isn't that odd? Kids don't eat well when they are sick. They pick at things, turn the usual staples down and eat lightly. Never mind Sarah, who was eating poorly to begin with.

So what is going on? Why is her appetite back to it's old self? I can't figure it out. It's like a miracle.

John says it's because he is home and so she feels much better. :):):) I guess he's going to have to skip the last year of college :) She just can't take it without him.

Unusual week

No Strep. Yay!! Still sick. Nay!!

It's been a long few days for Sarah. She feels yucky. But I am keeping her hydrated. She has a whopper of a cold. Fever comes and goes. Obviously, I did not weigh her this week as I am sure she is way down on the scale with this bug. I do not want to freak out when I look at the number :)

John is still home for his break. He is working out, going to movies, eating, snacking, babysitting Sarah, watching Seton Hall Basketball on TV and hanging out with his wonderful mother. Oh, and did I say eating?

Feeling lousy

She feels bad. She vomited a couple of times during the night then posted a fever this morning and a runny nose. I'm gonna run her to the pediatrician for a throat culture to rule out strep this afternoon. Poor baby. And poor me, cause I'll be next, with the added enjoyment of a sinus infection. I figure in about 2 weeks it will all be over :)

Jimmy's surprise

This morning there was a knock on the door. It was the FedEx guy with a large box. He brought it into the kitchen for me. And I knew this was what my son Jimmy had sent. I had no idea what it would be.




So very exciting!!

So I got out the box opening utensils.

And pried open the top.




And there it was. Wrapped under the plastic.

A thing of beauty.

Blue, shiny and new.

I couldn't believe it.

Can you guess?





A new wheelchair!

Hooray!!!!!!!!!!

I have been saving for quite a while for another wheelchair for Sarah. She has a heavy-duty one that I don't use much when we are out and about because it is so heavy for me to lift. So for daily use I have had a lighter weight one that folds and fits in my trunk. I use this one practically every day. It has needed to be replaced for months. I purchased it 5 years ago and it has served us well, but has developed some broken parts that makes it unsafe. So I have been saving a little bit each month, determined to get her a new one for the spring.

And there goes Jimmy, surprising me with such a glorious gift.

A wonderful, thoughtful, generous, gift. For both of us.

And how did we celebrate?

We took it out to lunch at Friendlys!

After calling Jimmy of course :)

Riding

Sarah had theraputic riding today and did awesome. She was not too happy with the intial stretch of her legs over the horse's back but after that she was completely into it. And she rode outside because it was so warm today. Afterwards she brushed Casey's fluffy winter coat and fed him a snack. Have you ever heard a horse chew carrots? Good Lord. It's quite loud and crunchy:) And Casey is shedding! Which means we are covered in amber colored horse hair. It's all good.
On the way home I tempted her lackluster appetite with McDonalds. She scarfed down 2 cheeseburgers and some french fries. Yay!
She is holding steady at 69 pounds this week. I'd love to get her back over 70 but so far that goal is unreachable. Grrrr.
So after a nice spring day, we anticipate plowable snow tomorrow night. I can only think it won't last long since the sun is warmer in March.
Jimmy's gift for Sarah is 'in transit' to our home according to the tracking system and only 3 days till John rolls up the coast. Woot woot!