Thursday, April 23, 2009
To stop myself....
...from helping Sarah do something she can do for herself is so hard. There is not much she CAN do for herself. However, she can pick back up a little stuffed animal that she has dropped on her lap. But, it takes time for her to do it. Minutes, actually. She does not look to me for help. She looks down at the little bear and slowly brings her right hand down to touch it and then tries to grab it and pull it up. There are many many misses, where she curls her hand around it but it slips out of her grasp. She tries again and again and again. At this point I am holding my breath. And I watch and supress the strong physical urge to get up and just give her the bear. I literally have to make myself remain seated. She keeps trying and eventually she succeeds! Oh happy day! I see her take a cleansing breath and I take one myself. Victory in a tiny event.
Sick, sick, sick
That would be me. I am sick. Grrrr. I am on an antibiotic for a sinus infection but I can feel the virus heading down into my chest as well. I am croaking like a frog. Bleh.
So far Sarah remains well. I worked the past two evenings so she was being cared for by healthy Aunt Ali. Hopefully I can keep her germ free.
So far Sarah remains well. I worked the past two evenings so she was being cared for by healthy Aunt Ali. Hopefully I can keep her germ free.
Tuesday, April 21, 2009
Monday, April 20, 2009
Update
Well after a week of unexplained dizziness I have finally developed a cold. I think the dizziness is connected to this cold. I am guessing the inner ear was affected by the virus first and then it traveled to the respiratory system. So now I really am a mess. Add to that the predictable sinus infection that I always get with colds and by next weekend I ought to be in fine shape. Hah!
For now I have work tomorrow and I am going to try and go in. I have discovered that if I pretty much constantly snack then I don't become weak and woozy. So I am bringing in lots of snacks and drinks to eat for the eight hours. I hope it works :)
As for Sarah, she is just fine, thanks to Purell hand sanitizer! There's nothing worse than having the two of us sick at the same time. At which point I start calling my boys and whining. They don't need that!....yet.
For now I have work tomorrow and I am going to try and go in. I have discovered that if I pretty much constantly snack then I don't become weak and woozy. So I am bringing in lots of snacks and drinks to eat for the eight hours. I hope it works :)
As for Sarah, she is just fine, thanks to Purell hand sanitizer! There's nothing worse than having the two of us sick at the same time. At which point I start calling my boys and whining. They don't need that!....yet.
Sunday, April 19, 2009
Bummer
I have not been feeling too well this week and it does not seem to be subsiding yet. Last sunday I had a 5 hour bout of vertigo(severe dizziness) that could only be managed by my going to bed. Since then I am lightheaded, with a frequent dull headache and occasional nausea. Generally, I can still do my day-to-day stuff with Sarah and the house but working is another matter entirely. My nursing job requires that I be on my feet and busy for 8 hours or more. I worked on thursday and felt like fainting only 2 hours into the shift. It was not pretty. So I sat for 1/2 hour and ate icecream, pulled myself together and finshed the shift feeling very weak and sick. Needless to say, I am nervous about going in again tuesday and wednesday of this week. My symptoms have not improved since thursday so I am not sure I can do it. I did speak to my doctor and she put me on a medication but it is not helping:(
So there you have it. It's a bummer.
So there you have it. It's a bummer.
Wednesday, April 15, 2009
Tuesday, April 14, 2009
24 Years Ago Today
On a quiet sunny spring Sunday afternoon in NY, I was handed this:
And I became a mom. It was my dream come true. And I was entirely, completely unaware of the effect this little person would have on the rest of my life. I was also unaware of the bright shiny spirit that had been given to this child. The eagerness, the drive, the enthusiasm, the courage, the energy, the optimism, the cheerfulness and the humor...all squeezed into such a tiny package. All I knew at the time was that I had my new little boy with copper colored hair and dimples, and I was so happy.
Happy Birthday Jimmy!!
And I became a mom. It was my dream come true. And I was entirely, completely unaware of the effect this little person would have on the rest of my life. I was also unaware of the bright shiny spirit that had been given to this child. The eagerness, the drive, the enthusiasm, the courage, the energy, the optimism, the cheerfulness and the humor...all squeezed into such a tiny package. All I knew at the time was that I had my new little boy with copper colored hair and dimples, and I was so happy.
Happy Birthday Jimmy!!
Monday, April 13, 2009
Sunday, April 12, 2009
Thursday, April 09, 2009
Right up to her chinny chin chin.
So I cut her hair. About 4 inches off. Once it gets past a certain point it is just too much. Too thick, too many tangles, too heavy draped over her face at night....too much. So the other day I got out the scissors and that was that. She always cries when I cut her hair because she can't stand the FEELING of the scissors cutting her hair and tugging a bit on her head. Can't stand it. So there is always crying. Then she gets used to it and I am able to finish the job without tears. So here is the new shorter 'do'. It's kinda hard to see as she has a black shirt on, but you get the idea.
Sunday, April 05, 2009
The Red Hat Guy
And I must say something about the 'red hat guy'(see previous post). He goes by on his bike every day at the same time, wearing the same clothes, at the same speed. He always looks exactly the same. Always wears the red knit hat no matter what the temperature. Same time. Every day. Same clothes. Same speed. It is unnerving. He goes by every 20 minutes, to the minute, three times in a row each afternoon. And then I don't see him till the next day. Like the 'Truman Show' with Jim Carey. Enough said. I need to get a picture of him. I'm gonna try.
Here ya go !
Here ya go !
A parade outside my window!
As I sit here on the computer, next to Sarah in her stander, who is watching the Sound of Music, I am coming to the realization that there is a parade of various characters trooping by my house on this sunny Sunday afternoon. Most other places I have lived have been pretty secluded, where rarely anyone went by. We moved to this neighborhood in the dead of winter and since then it has been quiet. Until the nicer weather started trickling in. Today is the sunniest and warmest so far(about 55 degrees F) and the parade has begun.
Lots of walkers in all sorts of walking attire, people walking dogs, pushing babies, riding bikes and rollerblading. The little girls have sparkly streamers coming from their handlebars that send flickers of color on my living room ceiling. Sometimes they fall off their new bikes. And dad turns around to come back and help them. Sometimes a dog sits and the owner cannot get them moving. I saw the first motorcycle glide past today. And the first boat being trailed(is that the word?)
Maybe I should be out there with them but I am headed into work in 30 minutes so that's out for today. I can't wait to see how many more join the parade when the thermometer hits 70!
You know, I have an idea! I need someone to cut my grass this spring/summer. Maybe I should just post a sign on my lawn. So many go by there must be one person who would be interested!
Lots of walkers in all sorts of walking attire, people walking dogs, pushing babies, riding bikes and rollerblading. The little girls have sparkly streamers coming from their handlebars that send flickers of color on my living room ceiling. Sometimes they fall off their new bikes. And dad turns around to come back and help them. Sometimes a dog sits and the owner cannot get them moving. I saw the first motorcycle glide past today. And the first boat being trailed(is that the word?)
Maybe I should be out there with them but I am headed into work in 30 minutes so that's out for today. I can't wait to see how many more join the parade when the thermometer hits 70!
You know, I have an idea! I need someone to cut my grass this spring/summer. Maybe I should just post a sign on my lawn. So many go by there must be one person who would be interested!
Friday, April 03, 2009
The best sound in our house, for sure!
This is a 2 minute Flip video of Sarah last night after I put her in her bed. What she does is kind of 'sing' to herself after I cover her with the blanket. We love the sound. It means that all is right with her world, she is comfortable and happy. She is relaxed. She will quietly sing for about 15 minutes or so before dropping off to sleep.
What you can see in this video is her repetitive hand movements. She does these continually when she is lying down until she goes to sleep. She has a whole repertoire going on :)
She cannot get herself up out of bed, the most she can do is roll side to side or over onto her stomach. Sometimes she gets 'stuck against the wall and I have to reposition her. I tug her back to the middle of the bed and recover her with the blanket. She's a great sleeper. Generally from 8:30pm until 8 am. Yay!
What you can see in this video is her repetitive hand movements. She does these continually when she is lying down until she goes to sleep. She has a whole repertoire going on :)
She cannot get herself up out of bed, the most she can do is roll side to side or over onto her stomach. Sometimes she gets 'stuck against the wall and I have to reposition her. I tug her back to the middle of the bed and recover her with the blanket. She's a great sleeper. Generally from 8:30pm until 8 am. Yay!
Thursday, April 02, 2009
Glad that's over
Yesterday went well at Children's Hospital. There are a number of things of which I am so thankful for and I will list them for your reading pleasure :)
*There was NO traffic on our way into Boston.
*Sarah was happy and excited to be out of the house.
*We didn't have to wait THAT long to see the docs.
*Sarah did not require spine and hip xrays this time.
*We saw Dr.S.(orthopedic surgeon) and Dr.N.(physiatrist) at the same time. Together. So they could brainstorm face to face.
*Hamstring surgery is off the table for now.
*Her spine is stable.
*The docs were very happy to hear she was taking steps in the Theratrek gait trainer.
*Dr. N. will now schedule botox in the hamstrings(no phenol), so no anesthesia required.
*The hamstring issue is a 'wait and see' for now.
*Sarah's strength and dystonia were in full force as Dr. S. TRIED with all his might to bend her every which way to check for contractures and range of motion.
*DR. N. then held Sarah's shoulders and whispered constantly in her ear during Dr. S's difficult examination to relax her and the dystonia.
*It worked! Sarah relaxed. I was happy. And it was less traumatic for Sarah.
Can I just stop here for a second and tell you something? Children's is a teaching hospital and I respect that. After all, that's one of the many reasons it excels. However, with a 'teaching hospital' there are a lot of learners. And they learn on your child. Sometimes it is OK with me and sometimes not. Mostly it is not. Yes, I had to learn also on patients (I am an RN) but there are just some things I have to say No to. Yesterday I said 'no' quite a few times. Before Sarah actually saw Dr. S. and Dr. N., the young learners (ie residents) revolve through our waiting room door and start washing their hands, expecting to examine Sarah. This means that each one assumed they were going to bend, push, and struggle with my child to see just where all her tightness originated. Each one. Separately. Ummm... I don't think so. I politely stopped each one of them mid-wash and explained that only Dr. S would be doing any measuring of body angles. Sarah only has enough in her for one tough painful run-through. Each one was surprised at my refusal but gracious and backed right off. But imagine......it is a painful procedure for many children like Sarah who have spasticity and dystonia to endure....I think once is enough.
And now back to the good stuff :)
*There was a very nice CHB jacket in the gift store that was calling my name...and a T shirt!
*Really good clam chowder at Au Bon Pain :)
*Sarah ate a great dinner before we left the hospital.
*We got home in record time.
*I was able to get her Miralax into her before bed.
*Sarah went right to sleep.
*And no vomiting this morning when she woke up!
(I guess this last one requires an explanation. When Sarah gets overly excited for an extended period of time(a few hours) her digestive system slows and the next morning she vomits as things haven't been moving well in there....Sarah WAS overly excited yesterday with the trip as she has been spending so much time at home lately...but no vomiting, so hooray!)
Here are a couple of shots of the girl:
This is on the way in.
And this is waiting for the docs. Do you see those funky 'pants' she has on? Well, originally she had on cute black stretch pants with aqua stripes down the sides to match the shirt. Of course, her mom splashed her drink all over them so I had to put her pj bottoms on her when we got to the hospital! And yes, I bring her pajamas to these late day appts to change her into for the ride home:)
So today we are both very tired, but 'glad that's over'. Whew.
*There was NO traffic on our way into Boston.
*Sarah was happy and excited to be out of the house.
*We didn't have to wait THAT long to see the docs.
*Sarah did not require spine and hip xrays this time.
*We saw Dr.S.(orthopedic surgeon) and Dr.N.(physiatrist) at the same time. Together. So they could brainstorm face to face.
*Hamstring surgery is off the table for now.
*Her spine is stable.
*The docs were very happy to hear she was taking steps in the Theratrek gait trainer.
*Dr. N. will now schedule botox in the hamstrings(no phenol), so no anesthesia required.
*The hamstring issue is a 'wait and see' for now.
*Sarah's strength and dystonia were in full force as Dr. S. TRIED with all his might to bend her every which way to check for contractures and range of motion.
*DR. N. then held Sarah's shoulders and whispered constantly in her ear during Dr. S's difficult examination to relax her and the dystonia.
*It worked! Sarah relaxed. I was happy. And it was less traumatic for Sarah.
Can I just stop here for a second and tell you something? Children's is a teaching hospital and I respect that. After all, that's one of the many reasons it excels. However, with a 'teaching hospital' there are a lot of learners. And they learn on your child. Sometimes it is OK with me and sometimes not. Mostly it is not. Yes, I had to learn also on patients (I am an RN) but there are just some things I have to say No to. Yesterday I said 'no' quite a few times. Before Sarah actually saw Dr. S. and Dr. N., the young learners (ie residents) revolve through our waiting room door and start washing their hands, expecting to examine Sarah. This means that each one assumed they were going to bend, push, and struggle with my child to see just where all her tightness originated. Each one. Separately. Ummm... I don't think so. I politely stopped each one of them mid-wash and explained that only Dr. S would be doing any measuring of body angles. Sarah only has enough in her for one tough painful run-through. Each one was surprised at my refusal but gracious and backed right off. But imagine......it is a painful procedure for many children like Sarah who have spasticity and dystonia to endure....I think once is enough.
And now back to the good stuff :)
*There was a very nice CHB jacket in the gift store that was calling my name...and a T shirt!
*Really good clam chowder at Au Bon Pain :)
*Sarah ate a great dinner before we left the hospital.
*We got home in record time.
*I was able to get her Miralax into her before bed.
*Sarah went right to sleep.
*And no vomiting this morning when she woke up!
(I guess this last one requires an explanation. When Sarah gets overly excited for an extended period of time(a few hours) her digestive system slows and the next morning she vomits as things haven't been moving well in there....Sarah WAS overly excited yesterday with the trip as she has been spending so much time at home lately...but no vomiting, so hooray!)
Here are a couple of shots of the girl:
This is on the way in.
And this is waiting for the docs. Do you see those funky 'pants' she has on? Well, originally she had on cute black stretch pants with aqua stripes down the sides to match the shirt. Of course, her mom splashed her drink all over them so I had to put her pj bottoms on her when we got to the hospital! And yes, I bring her pajamas to these late day appts to change her into for the ride home:)
So today we are both very tired, but 'glad that's over'. Whew.
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