... the Starbucks baristas at the Children's Hospital location, that is. Which is basically another way of saying that we've had a few doctor's visits since my last post (and, of course, each visit to Children's includes a visit to Starbucks for Charlotta's hot chocolate and Mom's Earl Grey Tea Latte.)
On August 2, we had a check up appointment with Dr Reilly, Charlotta's back surgeon. When we were talking to Charlotta before the appointment, we said "whatever you say, don't tell Dr Reilly that you were on the slip'n'slide!" (she was just really sitting on the slide, not slipping, so not really that bad for her back). Well, we get into the exam room with Dr Reilly and the first thing she blurts out is, "We've got bunkbeds now." So, naturally, we had to explain that Charlotta only slept on the bottom and her sister slept on the top. That seemed to appease him, but he went on to say that we really should be letting her spine heal and not do any activities that might stress or strain her back. Good thing we didn't mention her bike riding, swinging or playing basketball :-O.
Overall, the doctor was quite happy with her progress 10 weeks after surgery, and just wanted to keep an eye on her lower back (which was not operated on) to make sure her lower spine didn't curve or twist.
Then, on August 9, we went back to the hospital to have the Vagus Nerve Stimulator (VNS) implanted by Dr Singhal, our neurosurgeon (yes, we have one of those too!). The surgery was planned to last about 2 hours, and we were scheduled to go home at the end of the day.
It was pretty uneventful, but about an hour and a half into Charlotta's surgery, as I was sitting in the daycare surgery waiting room reading my book, I thought I overheard one of the nurses say something like, "Dr Singhal's doing CPR now." The second I heard those words the blood instantly drained from my face and my stomach went into a knot. Dr Singhal? CPR? Charlotta? I just sat there, looking at the nurses station, hoping to hear some other detail or something that would reassure me that it wasn't Charlotta that needed CPR. Despite straining my ears, I didn't hear anything else, and couldn't bring myself to go up to the nurse and ask if I had overheard correctly. Instead, I sat there for about 20 minutes imagining the worst. Finally, one of the neurology nurses came out and told me that everything went just fine and that Dr Singhal was finishing up the surgery now. Phew, I must have heard wrong...
We came home around dinner time, and Charlotta had a little something to eat and went to bed. The next day, she was practically back to her normal self. What a trooper! She has two incisions: one under her arm where the VNS device was implanted and the other at the side of her neck where the electrical lead was attached to her Vagus nerve. Both of them have dissolve-able stitches covered with steri-strips -- at least we won't have another trip back to get the staples out!
We do go back to the hospital on August 24 to get the device turned on. They don't turn it on right after surgery in order to give the body a chance to get used to all the new hardware. When the device is turned on, it will be at a very low setting. We'll then go back every two weeks or so to have the settings increased. It should take about 2-3 months to have the settings running at a therapeutic level.
We're so excited to see how this will affect Charlotta and her seizures!
Saturday, August 13, 2011
Sunday, July 24, 2011
Doing Well & Surgery #2
Charlotta continues to amaze us with her recovery. In the last few weeks, she's been swimming, playing basketball, riding her bike, and more. There's not too much she can't do, and a few things she's not supposed to do (contact sports, amusement rides). On August 2, we go back to her surgeon for a check up. I think he will be very pleased with her progress.
It's a good thing she's recovered so well from the back surgery, because now we have another (minor) surgery on the horizon. We had an appointment with Charlotta's neurologist at the beginning of July, and at that time we decided that we wanted to go ahead with the Vagal Nerve Stimulator (VNS). As I've mentioned before, this is a small device (about the size of a key fob) that is implanted under her armpit, and is wired to the vagal nerve which runs up the side of her neck into her brain. The VNS gives an electrical charge to the vagal at certain intervals (the level of the charge and the time between the intervals can be adjusted remotely by the nurse). This consistent impulse to the brain can reduce the number and intensity of seizures, and can also have the added effect of helping the child be more alert and engaged overall.
Luckily, the nurse was able to schedule our VNS surgery in soon: August 9. It's just day surgery and will take about 1-2 hours (piece of cake!), and Charlotta will come home that night. Once the device is implanted, we go back to the hospital about 2 weeks later for it to be turned on. After that, we'll have regular visits back to the hospital as they "ramp up" the intensity and frequency of the impulses. It should take about 2 to 3 months to have the VNS up to the appropriate strength for Charlotta, and after that there is always room for tweaking.
Steve and I are really excited about this device and what it might mean in terms of reducing her seizures as well as some of the "static" that seems to be going on in her brain. Cross your fingers and wish us luck that it all goes well!
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| Hands up if you're an Olympic superstar! (at the Sliding Centre in Whistler, where we went for a short holiday). |
It's a good thing she's recovered so well from the back surgery, because now we have another (minor) surgery on the horizon. We had an appointment with Charlotta's neurologist at the beginning of July, and at that time we decided that we wanted to go ahead with the Vagal Nerve Stimulator (VNS). As I've mentioned before, this is a small device (about the size of a key fob) that is implanted under her armpit, and is wired to the vagal nerve which runs up the side of her neck into her brain. The VNS gives an electrical charge to the vagal at certain intervals (the level of the charge and the time between the intervals can be adjusted remotely by the nurse). This consistent impulse to the brain can reduce the number and intensity of seizures, and can also have the added effect of helping the child be more alert and engaged overall.
Luckily, the nurse was able to schedule our VNS surgery in soon: August 9. It's just day surgery and will take about 1-2 hours (piece of cake!), and Charlotta will come home that night. Once the device is implanted, we go back to the hospital about 2 weeks later for it to be turned on. After that, we'll have regular visits back to the hospital as they "ramp up" the intensity and frequency of the impulses. It should take about 2 to 3 months to have the VNS up to the appropriate strength for Charlotta, and after that there is always room for tweaking.
Steve and I are really excited about this device and what it might mean in terms of reducing her seizures as well as some of the "static" that seems to be going on in her brain. Cross your fingers and wish us luck that it all goes well!
Sunday, July 3, 2011
Back to Normal
This weekend was the first time it really felt like summer -- the sun was out, the temperature was above 20 degrees C (!) and we went to the beach. While Steve and Jack waxed up the skim board and took it for a skoot on some of the tidal puddles, Charlotta dug in the sand and Ashley did her best mermaid impression.
While I did help Charlotta over some of the rocks in order to get to the sandy beach, she was pretty independent once we got down there and was getting up and down from the sand by herself. Almost back to normal! We actually have our first appointment with the physiotherapist this coming Tuesday, so I'd like to get her opinion on Charlotta's posture and what we can do to help her develop better posture after surgery and not fall into bad slouching habits. At the moment Charlotta's shoulders are at different heights, and I think with some therapy we can get her to hold her shoulders straight and square.
Ashley left today with her Oma for a week-long trip to Thetis Island (off of Chemainus on Vancouver Island). They are attending a camp complete with bunk houses, a dining hall, sandy beach and fun activities. Here at home, Charlotta and Jack will be going to a morning day camp at our local church. Steve's home on holidays this week (but working on painting the house), but I'm the lone one who has to work (cue the violins... ). I am off on holidays next week though!
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| The first of many beach days at White Rock beach. |
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| Mermaid Ashley |
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| I'm happy to report that no chiropractor appointments were made as a result of this activity. |
While I did help Charlotta over some of the rocks in order to get to the sandy beach, she was pretty independent once we got down there and was getting up and down from the sand by herself. Almost back to normal! We actually have our first appointment with the physiotherapist this coming Tuesday, so I'd like to get her opinion on Charlotta's posture and what we can do to help her develop better posture after surgery and not fall into bad slouching habits. At the moment Charlotta's shoulders are at different heights, and I think with some therapy we can get her to hold her shoulders straight and square.
Ashley left today with her Oma for a week-long trip to Thetis Island (off of Chemainus on Vancouver Island). They are attending a camp complete with bunk houses, a dining hall, sandy beach and fun activities. Here at home, Charlotta and Jack will be going to a morning day camp at our local church. Steve's home on holidays this week (but working on painting the house), but I'm the lone one who has to work (cue the violins... ). I am off on holidays next week though!
Friday, June 24, 2011
TGIF
Well, it's Friday evening and we made it through the week. Whew!
I went back to work on Monday (had to deal with 387 emails in my Inbox, thank you very much) and Charlotta was back at school this week. For most of the days, she went to class in the morning and came home around lunchtime and took a nap in the afternoon. She is slowly building up her stamina (and her chest/upper stomach problems have also cleared up). Today, she was at school all day. She was definitely fading by the time I picked her up, but nowhere in our wildest thoughts did we think she should be back at school just three weeks after her surgery. Kids are truly resilient and Charlotta, in my opinion, is truly remarkable.
Randy, Julie and Anna.
Isn't Anna a cutie? (... and isn't Charlotta standing up straight?)
Ashley's hamming it up with Anna.
Jack and Uncle Randy in their matching "Dragon" t-shirts from China.
Saturday, June 18, 2011
Back to School.. and Back to the Doctor
On Friday, Charlotta went back to school for the morning. Her classroom teacher and other teachers in the school were all happy to see her, as were her classmates.
"You're so much taller."
"Wow, your back is so straight."
"We're so glad to have you back, Charlotta."
She just stood there grinning as the comments swirled about her, while I was close to shedding a few tears of joy.
Throughout this whole experience, we have received so much support from friends, family, co-workers and our community, including the school, and parents and teachers at school. Even parents and teachers at Jack's preschool have heard about Charlotta's situation and have helped us out. We are so touched and appreciative of all the support that's been shown us over the last few weeks. Thank you!
So back to school: Charlotta made it through the morning, doing most of her usual activities, plus a Father's Day craft. All of the action -- in comparison to the last sedentary two weeks of her life -- really tired her out. We picked her up at lunchtime, fed her at home and then she took a two-hour nap.
Earlier this week, we encountered an unforeseen complication of her operation. For about three mornings in a row, Charlotta complained of having a sore upper stomach (just below her sternum) right after getting up. She's not one to complain, but we could see that this really hurt her. It would last for about five minutes as she grimaced in pain and tried to breathe through it. Then it was gone and she was fine for the rest of the day. In my uneducated opinion, I thought that either she had pulled a stomach muscle or that she had an ulcer from all the medication she had been on lately.
On Thursday, I took her to our local GP to get a professional opinion. He was aware of her spine surgery and said that prior to surgery, the organs in her upper body were used to be squished or maybe had not even grown in length because her upper chest was so compacted due to her curved spine. Now, all of a sudden, with her spine straightened out, her esophagus is stretched and when she's asleep that may cause her stomach and the section of the esophagus that joins the stomach to slide up into the chest through an opening called the hiatus. When she wakes up and sits upright, it may slide back down again through the hiatus and that's the pain she is feeling.
He said that her body would adapt and that this was probably just a passing discomfort. Still, he prescribed some anti-acid medication that should make her more comfortable. Last night, we also raised the top end of her bed so that she's sleeping on a slight angle. It seemed to have worked because she didn't complain of a sore stomach this morning.
It does make you think about all the other parts of her body, besides her spine, that have had to adjust since the surgery.
"You're so much taller."
"Wow, your back is so straight."
"We're so glad to have you back, Charlotta."
She just stood there grinning as the comments swirled about her, while I was close to shedding a few tears of joy.
Throughout this whole experience, we have received so much support from friends, family, co-workers and our community, including the school, and parents and teachers at school. Even parents and teachers at Jack's preschool have heard about Charlotta's situation and have helped us out. We are so touched and appreciative of all the support that's been shown us over the last few weeks. Thank you!
So back to school: Charlotta made it through the morning, doing most of her usual activities, plus a Father's Day craft. All of the action -- in comparison to the last sedentary two weeks of her life -- really tired her out. We picked her up at lunchtime, fed her at home and then she took a two-hour nap.
Earlier this week, we encountered an unforeseen complication of her operation. For about three mornings in a row, Charlotta complained of having a sore upper stomach (just below her sternum) right after getting up. She's not one to complain, but we could see that this really hurt her. It would last for about five minutes as she grimaced in pain and tried to breathe through it. Then it was gone and she was fine for the rest of the day. In my uneducated opinion, I thought that either she had pulled a stomach muscle or that she had an ulcer from all the medication she had been on lately.
On Thursday, I took her to our local GP to get a professional opinion. He was aware of her spine surgery and said that prior to surgery, the organs in her upper body were used to be squished or maybe had not even grown in length because her upper chest was so compacted due to her curved spine. Now, all of a sudden, with her spine straightened out, her esophagus is stretched and when she's asleep that may cause her stomach and the section of the esophagus that joins the stomach to slide up into the chest through an opening called the hiatus. When she wakes up and sits upright, it may slide back down again through the hiatus and that's the pain she is feeling.
He said that her body would adapt and that this was probably just a passing discomfort. Still, he prescribed some anti-acid medication that should make her more comfortable. Last night, we also raised the top end of her bed so that she's sleeping on a slight angle. It seemed to have worked because she didn't complain of a sore stomach this morning.
It does make you think about all the other parts of her body, besides her spine, that have had to adjust since the surgery.
Tuesday, June 14, 2011
Yesterday was "S" Day
... and by "S" day, I don't mean Stanley Cup day -- that happens on Wednesday, all you faithful Canucks fans. :-)
No, yesterday was Staple day. We had a 1pm appointment at Children's Hospital to get all of Charlotta's staples removed. There were about 60-70 staples closing the incision down her back, and 3 sets of about 10 staples each on her side, under her arm. I'm not going to sugar-coat the experience and say Charlotta was good with it. She cried. A lot. But I'm sure it was a painful. For her part, the nurse who removed the staples was experienced -- calm and efficient -- and the whole process only took about 1/2 hour.
The good news is that there is no infection in any of Charlotta's incisions. They are a bit scabby (that's as graphic as I'm going to get) and will heal up on their own.
She's now able to have a shower again, which is good news on the hair-washing scene. Yesterday, before we went for our appointment, I actually tried to wash her hair. I had a hair-salon style set up at our downstairs bathroom sink. The only problem was that I totally goofed with the plastic garbage bag/cape. Instead of diverting the water back into the sink, the way I had things set up, the water ran directly down Charlotta's back, soaking her bandage, underwear, pants, chair, etc. Oops. Glad that was the first and last time I had to do that.
No, yesterday was Staple day. We had a 1pm appointment at Children's Hospital to get all of Charlotta's staples removed. There were about 60-70 staples closing the incision down her back, and 3 sets of about 10 staples each on her side, under her arm. I'm not going to sugar-coat the experience and say Charlotta was good with it. She cried. A lot. But I'm sure it was a painful. For her part, the nurse who removed the staples was experienced -- calm and efficient -- and the whole process only took about 1/2 hour.
The good news is that there is no infection in any of Charlotta's incisions. They are a bit scabby (that's as graphic as I'm going to get) and will heal up on their own.
She's now able to have a shower again, which is good news on the hair-washing scene. Yesterday, before we went for our appointment, I actually tried to wash her hair. I had a hair-salon style set up at our downstairs bathroom sink. The only problem was that I totally goofed with the plastic garbage bag/cape. Instead of diverting the water back into the sink, the way I had things set up, the water ran directly down Charlotta's back, soaking her bandage, underwear, pants, chair, etc. Oops. Glad that was the first and last time I had to do that.
Thursday, June 9, 2011
Eyes in the Back of My Head... Please
OK, we've been home less than 48 hours and my worst fear has already come to pass: Charlotta went down the stairs by herself. This afternoon I had left Charlotta laying on the sofa in front of the TV, and went to help Ashley with something. A few minutes later, I go back to check on Charlotta and she's gone. Vanished. All that's left is an indentation in the sofa cushion and a cast-aside blanket. I frantically ask the other kids, "Where's Charlotta?" Jack pipes up casually, "Oh, she's downstairs in the mud room waiting for you to help her with her shoes." Downstairs!!! Yikes.
The reason for my stair paranoia is two-fold. The first is that we don't have a handrail on the lower flight of stairs that go down to the rec room and mud room, so there's nothing for Charlotta to grab on to for balance. The other reason is that her balance isn't all that great right now. The physio explained to me that if you or I were to stumble, we'd probably bend forward a bit and catch ourselves but with Charlotta, the rods in her back don't allow her to bend or curve, so if she trips and starts falling forward, her body can't react the same way as it instinctively used to and I'm worried she would fall flat on her face and injure herself.
To be honest, at the moment I would like best just to roll her up in bubble wrap and strap her to the sofa, but I know that's not possible. She wants to play and have fun like the other kids. This afternoon she wanted to play basketball and also asked if she could go on the swing set. She got a big NO from me on both accounts, but I know I won't be able to distract her all the time. And, as this afternoon's stairs incident clearly showed, I can't keep my eyes on her 24/7. Somehow I need to find a balance between keeping her safe and becoming an over-protective, safety-obsessed mother hen.
The reason for my stair paranoia is two-fold. The first is that we don't have a handrail on the lower flight of stairs that go down to the rec room and mud room, so there's nothing for Charlotta to grab on to for balance. The other reason is that her balance isn't all that great right now. The physio explained to me that if you or I were to stumble, we'd probably bend forward a bit and catch ourselves but with Charlotta, the rods in her back don't allow her to bend or curve, so if she trips and starts falling forward, her body can't react the same way as it instinctively used to and I'm worried she would fall flat on her face and injure herself.
To be honest, at the moment I would like best just to roll her up in bubble wrap and strap her to the sofa, but I know that's not possible. She wants to play and have fun like the other kids. This afternoon she wanted to play basketball and also asked if she could go on the swing set. She got a big NO from me on both accounts, but I know I won't be able to distract her all the time. And, as this afternoon's stairs incident clearly showed, I can't keep my eyes on her 24/7. Somehow I need to find a balance between keeping her safe and becoming an over-protective, safety-obsessed mother hen.
Wednesday, June 8, 2011
Home Sweet Home
Yesterday afternoon we were discharged from the hospital and came home. Our surgeon came in to see Charlotta just after lunch and was quite happy with her mobility (walking and going up and down stairs), so he said Charlotta could go home, despite not having met the poop criteria. (Charlotta ended up going at home just after dinner.)
It is good to be at home, but part of me liked the controlled environment of the hospital. There, Charlotta was my only focus and I could keep an eye on her 100% of the time. Now that we're at home, I need to resume my multi-tasking mom role, and I'm worried that while I'm cooking/cleaning/helping the other kids, I can't give Charlotta all of my attention and I'm afraid that she may try to do something that is unsafe, like go down the stairs by herself.
Charlotta is happy to be home and spent about half of her day lying in bed and the other half propped up on the sofa. She's doing well, but is still quite tired. Aside from looking tired, she lost quite a bit of weight in the hospital and is looking kind of gaunt. Her appetite is pretty good, so I'm sure she will gain it back fairly soon.
For tonight, though, we're both going to enjoy sleeping in our own beds. Good night...
It is good to be at home, but part of me liked the controlled environment of the hospital. There, Charlotta was my only focus and I could keep an eye on her 100% of the time. Now that we're at home, I need to resume my multi-tasking mom role, and I'm worried that while I'm cooking/cleaning/helping the other kids, I can't give Charlotta all of my attention and I'm afraid that she may try to do something that is unsafe, like go down the stairs by herself.
Charlotta is happy to be home and spent about half of her day lying in bed and the other half propped up on the sofa. She's doing well, but is still quite tired. Aside from looking tired, she lost quite a bit of weight in the hospital and is looking kind of gaunt. Her appetite is pretty good, so I'm sure she will gain it back fairly soon.
For tonight, though, we're both going to enjoy sleeping in our own beds. Good night...
Tuesday, June 7, 2011
Waiting for "Number Two"
Charlotta's been doing great these last two days and her walking is really improving. The physio is coming back at 11 am this morning to help us try going up and down the stairs. This is an important skill to try before we go home, since we have two flights of stairs in our house.
The other "condition" that Charlotta has to meet before we are discharged is that she had to have a bowel movement. I think this is kind of funny -- that we can have this really complicated surgery with a lengthy rehabilitation period, but it all comes down to whether she poops or not before the doctor lets us go home. Apparently this "waiting for number two" scenario is quite common among kids who have surgery. All of the pain medication and the anesthesia they are given really blocks them up. And, to be honest, I would rather have the help of the nurses and their experience in this department to get Charlotta moving again, rather than deal with it at home on our own. Charlotta's been given a few different laxatives over the last 48 hours, so hopefully we'll get some action soon, and be able to go home today.
Other than that, we're just trying to cope with our bad hair days. Charlotta hasn't had a hair wash in over a week (she can't get her incision wet), so we're trying to mask her bad hair with a colourful hair band. And I'm wearing my trusty hat until the hospital volunteer comes later this morning and I can go for a shower.
The other "condition" that Charlotta has to meet before we are discharged is that she had to have a bowel movement. I think this is kind of funny -- that we can have this really complicated surgery with a lengthy rehabilitation period, but it all comes down to whether she poops or not before the doctor lets us go home. Apparently this "waiting for number two" scenario is quite common among kids who have surgery. All of the pain medication and the anesthesia they are given really blocks them up. And, to be honest, I would rather have the help of the nurses and their experience in this department to get Charlotta moving again, rather than deal with it at home on our own. Charlotta's been given a few different laxatives over the last 48 hours, so hopefully we'll get some action soon, and be able to go home today.
Other than that, we're just trying to cope with our bad hair days. Charlotta hasn't had a hair wash in over a week (she can't get her incision wet), so we're trying to mask her bad hair with a colourful hair band. And I'm wearing my trusty hat until the hospital volunteer comes later this morning and I can go for a shower.
Playing Barbies... again!
Sunday, June 5, 2011
Lifting Charlotta's Spirits
This weekend was a turning point for Charlotta. In addition to getting stronger at walking, she has also come out of the medication-induced fog that she's been in since surgery. She is no longer getting any morphine and is only taking Tylenol for pain. She's talkative and awake most of the day -- it's good to have the old, chatterbox Charlotta back.
Since our stay here, we've received many great get-well gifts from family, friends, co-workers, classmates and teachers. Charlotta has been given some great balloon bouquets, but the one that arrived today from my brother and his family in Ottawa takes the cake. Each balloon was 3-to-4 feet in length, and there were six of them all together (a horse, a turtle, a unicorn, a rainbow, a butterfly and a dolphin). Looking into Charlotta's room from the hallway, you could barely see her bed for all the balloons in the way.
The balloons also had a therapeutic value. They arrived just as Charlotta had finished up a walk with the physiotherapist this afternoon. The physio had wanted her to walk a bit further, but she didn't want to do any more. Then, Steve and the physio had the idea to take the horse (Charlotta's favourite balloon) for a walk. The "led" the horse for a full lap around the ward. That balloon was just the encouragement she needed to go those extra few steps.
Jack and Ashley also got in on the balloon action, as Charlotta gave them each one of the big ones to take home -- the unicorn for Ashley, and the dolphin (named Flipper) for Jack.
Since our stay here, we've received many great get-well gifts from family, friends, co-workers, classmates and teachers. Charlotta has been given some great balloon bouquets, but the one that arrived today from my brother and his family in Ottawa takes the cake. Each balloon was 3-to-4 feet in length, and there were six of them all together (a horse, a turtle, a unicorn, a rainbow, a butterfly and a dolphin). Looking into Charlotta's room from the hallway, you could barely see her bed for all the balloons in the way.
The balloons also had a therapeutic value. They arrived just as Charlotta had finished up a walk with the physiotherapist this afternoon. The physio had wanted her to walk a bit further, but she didn't want to do any more. Then, Steve and the physio had the idea to take the horse (Charlotta's favourite balloon) for a walk. The "led" the horse for a full lap around the ward. That balloon was just the encouragement she needed to go those extra few steps.
Jack and Ashley also got in on the balloon action, as Charlotta gave them each one of the big ones to take home -- the unicorn for Ashley, and the dolphin (named Flipper) for Jack.
Saturday, June 4, 2011
One Small Step
Written Saturday evening:
OK, I leave Charlotta alone for the weekend with Steve and I miss all the exciting stuff! Today she not only took one small step, but many. With the help of the physiotherapist, Steve was able to get Charlotta up and walking this morning, and then again this afternoon. They both had to hold under her arms to help her with her balance, but she was able to walk about 15 feet from her room and back again. She's quite unsteady when walking because her left foot is always trying to step in front of her right foot. This is what her leg muscles remember from before her operation when she had to compensate for the unbalance in her back. She'll have to re-learn how to walk straight.
Steve also took Charlotta for a few longer rides in a wheelchair around the hospital. They went outside for a bit and then down to Starbucks for a hot chocolate (of course). Charlotta's cousins also came for a visit and they played with her in the hospital playroom. She was able to sit for 2 hours in the wheelchair, which is an accomplishment in itself since yesterday she could barely sit up and keep her balance by herself.
It also seems like the "spacey" affects of the medication are wearing off, as Charlotta is back to her own chatty self and was awake for most of the day. When I talked to Steve on the phone tonight around 9pm, he was saying to me, "I should get her to sleep soon. She's tired" and in the background I hear Charlotta say, "No, I'm not!"
Finally, I'm not sure if anyone has seen the Children's Miracle Weekend show on Global TV (it's on Saturday and Sunday). The telethon is raising funds for BC Children's Hospital. Those of you who have been there know that the hospital is truly an incredible place with so many talented doctors, nurses and therapists. We've spent our fair share of time there over the years, and always feel so fortunate and blessed to have such a great facility so close to home.
I was just watching the telethon tonight (as I'm typing this) and saw a short video of a girl named Sophie who had the exact same operation as Charlotta. She's doing very well now and the biggest outcome for her was that she no longer had pain in her back. Even though Charlotta didn't complain about the pain, I'm sure it was there and I'm glad to know that her back will feel better when she's fully recovered.
OK, I leave Charlotta alone for the weekend with Steve and I miss all the exciting stuff! Today she not only took one small step, but many. With the help of the physiotherapist, Steve was able to get Charlotta up and walking this morning, and then again this afternoon. They both had to hold under her arms to help her with her balance, but she was able to walk about 15 feet from her room and back again. She's quite unsteady when walking because her left foot is always trying to step in front of her right foot. This is what her leg muscles remember from before her operation when she had to compensate for the unbalance in her back. She'll have to re-learn how to walk straight.
Steve also took Charlotta for a few longer rides in a wheelchair around the hospital. They went outside for a bit and then down to Starbucks for a hot chocolate (of course). Charlotta's cousins also came for a visit and they played with her in the hospital playroom. She was able to sit for 2 hours in the wheelchair, which is an accomplishment in itself since yesterday she could barely sit up and keep her balance by herself.
It also seems like the "spacey" affects of the medication are wearing off, as Charlotta is back to her own chatty self and was awake for most of the day. When I talked to Steve on the phone tonight around 9pm, he was saying to me, "I should get her to sleep soon. She's tired" and in the background I hear Charlotta say, "No, I'm not!"
Finally, I'm not sure if anyone has seen the Children's Miracle Weekend show on Global TV (it's on Saturday and Sunday). The telethon is raising funds for BC Children's Hospital. Those of you who have been there know that the hospital is truly an incredible place with so many talented doctors, nurses and therapists. We've spent our fair share of time there over the years, and always feel so fortunate and blessed to have such a great facility so close to home.
I was just watching the telethon tonight (as I'm typing this) and saw a short video of a girl named Sophie who had the exact same operation as Charlotta. She's doing very well now and the biggest outcome for her was that she no longer had pain in her back. Even though Charlotta didn't complain about the pain, I'm sure it was there and I'm glad to know that her back will feel better when she's fully recovered.
The Weekend Shift
Written Saturday morning:
Yesterday, Friday, was another busy day and a step further along the road to recovery. Charlotta's chest tube was taken out at 7am but the young doctors (they do start early), and we had another drain from the incision in her back removed as well.
The physiotherapist came by in the morning and we got Charlotta up and sitting in her chair for about 20 minutes. That pretty much wiped her out, and she slept for about three hours in the afternoon. I would have to say that I didn't expect her to be so wiped out from the surgery, but it's really taken a toll on her and she spends a lot of time sleeping and when she's awake, she's not really herself. She is still getting some morphine (orally now), so I think that's keeping her a little on the "spacey" side. She seems to be having a few more "absence" seizures, so I'm wondering if the anesthetic and all of the other meds she has been getting have messed up her seizure control a bit.
Steve came down to the hospital last night with Jack, Ashley and two boxes of pizza. We all ate pizza in the room and the kids (not Charlotta) had fun playing in the playroom that is just down the hall from Charlotta's hospital room. I took the kids home around 8pm, and Steve will be staying with Charlotta over the weekend. I'll go back down on Sunday afternoon and we'll switch out. It seems like Tuesday will now be the likely discharge date, depending on how Charlotta progresses with her mobility.
Speaking of mobility, I just spoke with Steve on the phone and he said that this morning the physio came by and they were able to get Charlotta up and walking -- with support on both sides -- in the hallway for about 15 feet. When she was walking she was leaning toward the side where her curve had been, which the physio said was natural as she had been compensating for the curve these past few years. Over time she will learn to re-adjust herself and walk straight again. I see lots of physio visits in our future!
In fact, I'm trying to line up a physio who is experienced in post-op patients to come and do home visits at our house starting next week when we're back from the hospital. Charlotta will need to re-learn how to do many everyday things -- such as putting on her shoes, or bending down to pick up something -- since she won't be able to bend the part of her back that was fused.
That's about it for now. Go Canucks Go!
Yesterday, Friday, was another busy day and a step further along the road to recovery. Charlotta's chest tube was taken out at 7am but the young doctors (they do start early), and we had another drain from the incision in her back removed as well.
The physiotherapist came by in the morning and we got Charlotta up and sitting in her chair for about 20 minutes. That pretty much wiped her out, and she slept for about three hours in the afternoon. I would have to say that I didn't expect her to be so wiped out from the surgery, but it's really taken a toll on her and she spends a lot of time sleeping and when she's awake, she's not really herself. She is still getting some morphine (orally now), so I think that's keeping her a little on the "spacey" side. She seems to be having a few more "absence" seizures, so I'm wondering if the anesthetic and all of the other meds she has been getting have messed up her seizure control a bit.
Steve came down to the hospital last night with Jack, Ashley and two boxes of pizza. We all ate pizza in the room and the kids (not Charlotta) had fun playing in the playroom that is just down the hall from Charlotta's hospital room. I took the kids home around 8pm, and Steve will be staying with Charlotta over the weekend. I'll go back down on Sunday afternoon and we'll switch out. It seems like Tuesday will now be the likely discharge date, depending on how Charlotta progresses with her mobility.
Speaking of mobility, I just spoke with Steve on the phone and he said that this morning the physio came by and they were able to get Charlotta up and walking -- with support on both sides -- in the hallway for about 15 feet. When she was walking she was leaning toward the side where her curve had been, which the physio said was natural as she had been compensating for the curve these past few years. Over time she will learn to re-adjust herself and walk straight again. I see lots of physio visits in our future!
In fact, I'm trying to line up a physio who is experienced in post-op patients to come and do home visits at our house starting next week when we're back from the hospital. Charlotta will need to re-learn how to do many everyday things -- such as putting on her shoes, or bending down to pick up something -- since she won't be able to bend the part of her back that was fused.
That's about it for now. Go Canucks Go!
Thursday, June 2, 2011
What a Busy Day
It all began at 6:15 am this morning with a knock on our hospital room door. "Hello. Hello?" (I knew this wasn't our nurse as she just slips in quietly, checks what she needs to on Charlotta and slips out again). As I'm rubbing the sleep out of my eyes (and let's be honest, trying to remember what I'm wearing for pajamas and if they are decent), a young doctor walks into the room and introduces himself as the orthopedic resident. He gives me his name but in my fuzzy state I promptly forget it. He announces he's here to change the dressing on Charlotta's back. This ought to be interesting...
We turn on a few lights and go to rouse her. By this time, another young doctor has joined us. We roll Charlotta on her side, and the first doctor who is standing at her back begins picking at the 2-foot-long bandage that runs the length of her spine and covers the incision. Despite being stuck on with super-glue, the bandage comes off fairly easily (or maybe he's just very adept at removing it). I'm standing on the other side of the bed, facing Charlotta and trying to keep her lying on her side, but once the bandage is off I can't resist the urge to peek over to the other side and see her incision. I'm generally pretty squeamish about these kinds of things, but all-in-all it looked pretty good and was a neat row of 60+ staples. The new bandage went on and the doctors were gone. "Good morning, Mommy," mumbles Charlotta.
We had visits today from Charlotta's teachers, who brought an amazing bouquet of balloons along with a huge Get Well card from her class, and mini Get Well cards from the Kindergarten class that she helps out in. Steve's parents also came to visit, which allowed me to get outside for a bit and go for a walk in the rain (it felt good).
This morning and afternoon we had visits from the physiotherapists, whose goal it is to get Charlotta up and moving. This morning we sat her upright, with her feet dangling off of the edge of the bed for about 4-5 minutes. She looked kind of woozy and needed our help to stay upright. This afternoon we had a different (more ambitious) physio who not only had Charlotta sit up, but stand up and then shuffle a few steps to a chair and then sit in the chair for 10 minutes. She complained a bit, but did quite well, all things considered. We got her back in bed, and about 15 minutes later she threw up, and then she went to sleep. What a trooper!
She has actually spent most of the day sleeping. The doctor said this is normal, as the medication they used to sedate her during the operation is working its way through her system, and plus the morphine she is on can also make her feel tired, nauseous, woozy and just plain yucky. Tomorrow her chest tube comes out, so we will probably taper off the morphine after that.
Later on this afternoon, I got a great "before" and "after" look at Charlotta's spine. Her surgeon came in to check on her, and asked me if I wanted to see her before and after x-rays. Well, of course! As a fan of home reno shows, I love the dramatic "reveal."
Pretty cool, huh?
Before (left) and After (right)
Tomorrow, we've got more physio on the agenda, and they will take out her chest tube, which should make her feel much more comfortable.
Finally, I wanted to say a big thanks for all the good wishes, prayers, big hugs, positive vibes and casseroles you've all been sending our way. They are very much appreciated!
We turn on a few lights and go to rouse her. By this time, another young doctor has joined us. We roll Charlotta on her side, and the first doctor who is standing at her back begins picking at the 2-foot-long bandage that runs the length of her spine and covers the incision. Despite being stuck on with super-glue, the bandage comes off fairly easily (or maybe he's just very adept at removing it). I'm standing on the other side of the bed, facing Charlotta and trying to keep her lying on her side, but once the bandage is off I can't resist the urge to peek over to the other side and see her incision. I'm generally pretty squeamish about these kinds of things, but all-in-all it looked pretty good and was a neat row of 60+ staples. The new bandage went on and the doctors were gone. "Good morning, Mommy," mumbles Charlotta.
We had visits today from Charlotta's teachers, who brought an amazing bouquet of balloons along with a huge Get Well card from her class, and mini Get Well cards from the Kindergarten class that she helps out in. Steve's parents also came to visit, which allowed me to get outside for a bit and go for a walk in the rain (it felt good).
This morning and afternoon we had visits from the physiotherapists, whose goal it is to get Charlotta up and moving. This morning we sat her upright, with her feet dangling off of the edge of the bed for about 4-5 minutes. She looked kind of woozy and needed our help to stay upright. This afternoon we had a different (more ambitious) physio who not only had Charlotta sit up, but stand up and then shuffle a few steps to a chair and then sit in the chair for 10 minutes. She complained a bit, but did quite well, all things considered. We got her back in bed, and about 15 minutes later she threw up, and then she went to sleep. What a trooper!
She has actually spent most of the day sleeping. The doctor said this is normal, as the medication they used to sedate her during the operation is working its way through her system, and plus the morphine she is on can also make her feel tired, nauseous, woozy and just plain yucky. Tomorrow her chest tube comes out, so we will probably taper off the morphine after that.
Later on this afternoon, I got a great "before" and "after" look at Charlotta's spine. Her surgeon came in to check on her, and asked me if I wanted to see her before and after x-rays. Well, of course! As a fan of home reno shows, I love the dramatic "reveal."
Pretty cool, huh?
Before (left) and After (right)Finally, I wanted to say a big thanks for all the good wishes, prayers, big hugs, positive vibes and casseroles you've all been sending our way. They are very much appreciated!
Wednesday, June 1, 2011
Settling In
Yesterday, around noon, we got transferred up to a room on the 3rd floor, as predicted. The room allocation gods were smiling down on us, as we received a private room with -- get this -- a window and a real cot for me to sleep on (as opposed to a fold-out chair).
Not exactly the Four Seasons, but it's a good place for now.
Charlotta was pretty groggy for most of yesterday. She was able to eat and drink a tiny little bit, but spent most of the day dozing in and out of sleep. All of this is very typical after a surgery of her type, and the doctor is very happy with her progress.
Steve brought Jack and Ashley down for a visit last night around dinner time. As said, Charlotta was pretty sleepy, so she didn't get to interact with them very much, but it seemed to put their worries to ease about their sister. I think once they could visualize where she was and see that she was tired, but otherwise OK, it gave them some comfort.
Today's agenda includes a visit from my Mom. (I asked her to bring me some hand cream because I seem to be washing my hands 57 times a day with antibacterial soap -- hospitals always make me want to wash my hands). I hope I'll also get a chance to go outside for a walk when my Mom's here to watch Charlotta.
We're also scheduled for a chest x-ray sometime today. The surgeon had to deflate Charlotta's right lung during the operation because he removed a few of her disks through an incision under her arm. She currently has a chest tube in to drain away any of the extra fluid that collects from that part of the operation. Today's x-ray will tell us if her lung is back to normal function and the chest tube can come out.
I've also just had the physiotherapist pop into our room. Charlotta is sleeping right now, but he's going to come back later and see if we can get her to sit up. This ought to be interesting... He said it's best if kids start moving as soon as they can after this type of operation -- which is a far cry from the way things used to be a few decades ago when kids would be in body casts for months after spine operations. As the surgeon explained to us, the "cast" is now inside her body in the form of the metal rods, so she is able to get up and around a lot quicker. Thank goodness for medical advancements -- three months in a full body cast does not sound fun!
Not exactly the Four Seasons, but it's a good place for now.Charlotta was pretty groggy for most of yesterday. She was able to eat and drink a tiny little bit, but spent most of the day dozing in and out of sleep. All of this is very typical after a surgery of her type, and the doctor is very happy with her progress.
Steve brought Jack and Ashley down for a visit last night around dinner time. As said, Charlotta was pretty sleepy, so she didn't get to interact with them very much, but it seemed to put their worries to ease about their sister. I think once they could visualize where she was and see that she was tired, but otherwise OK, it gave them some comfort.
Today's agenda includes a visit from my Mom. (I asked her to bring me some hand cream because I seem to be washing my hands 57 times a day with antibacterial soap -- hospitals always make me want to wash my hands). I hope I'll also get a chance to go outside for a walk when my Mom's here to watch Charlotta.
We're also scheduled for a chest x-ray sometime today. The surgeon had to deflate Charlotta's right lung during the operation because he removed a few of her disks through an incision under her arm. She currently has a chest tube in to drain away any of the extra fluid that collects from that part of the operation. Today's x-ray will tell us if her lung is back to normal function and the chest tube can come out.
I've also just had the physiotherapist pop into our room. Charlotta is sleeping right now, but he's going to come back later and see if we can get her to sit up. This ought to be interesting... He said it's best if kids start moving as soon as they can after this type of operation -- which is a far cry from the way things used to be a few decades ago when kids would be in body casts for months after spine operations. As the surgeon explained to us, the "cast" is now inside her body in the form of the metal rods, so she is able to get up and around a lot quicker. Thank goodness for medical advancements -- three months in a full body cast does not sound fun!
Tuesday, May 31, 2011
The Surgery Went Extremely Well
"The surgery went extremely well."
Those were the wonderful words out of Dr Reilly's mouth when we finally saw him at 7pm last night. He said that Charlotta was very stable throughout the surgery and didn't lose a lot of blood. He was also very happy with how much he was able to correct her curvature. She had a 90 degree curve going into the operation (see x-rays), and he had initially hoped to straighten her to a 20 degree curve, but instead was able to get her back to 15 degree curve. We were very happy to hear that.
I think, though, the part that I was most relieved about was that her spinal cord was OK. This had been one of the risks of the surgery that I had been worrying about and dwelling on. During the operation, they actually have two technicians who monitor her spinal cord the whole time. How they do this is that they hook electrodes up to her scalp (like an EEG) to monitor her brain waves, and then throughout the operation they stimulate her feet and make sure that her brain registers the stimulation. In Charlotta's case, her brain waves are quite abnormal because of her tendency for seizures, so the techs had their work cut out for them, figuring out what was "normal" for Charlotta. Dr Reilly actually said that they would have been finished in the OR an hour earlier, but the technicians had to take some extra time during the surgery to test and adjust her EEG monitoring and look back on old EEG reports to compare them. In the end, all was good.
Last night, we were able to visit with Charlotta from about 7-10pm while she was in recovery in the ICU. They keep her there overnight to monitor her blood pressure, oxygen levels and all those other vital signs that can be compromised when you have an operation and are under anesthesia for 12 hours. She was pretty groggy and only opened her eyes a few times for us. She is also on morphine for the pain, and will be for the next few days, so hopefully she's not too uncomfortable.
If everything goes well and the Drs are happy with her recovery, we should be moved to a room on the upstairs ward later today (that is, if a room is available). Steve and I went home to sleep last night, but from today onward – when Charlotta’s in her room – I will be staying with her on those lovely pull-out chairs (should I make my chiropractor appointment already???)
Steve will be bringing Jack and Ashley down for a visit this afternoon, so that's sure to cheer up Charlotta.
Monday, May 30, 2011
Today's THE Day
Well, we made it to Children's this morning -- no calls over the weekend. We had to be here at 6:30 am on Monday morning. It's now 9am and Charlotta went into the operating room about an hour ago.
She was a lot more anxious about the surgery than I had expected. Over the weekend and even early this morning she was quite nonchalant and didn't mention it, although in our family we had been talking about it in general terms. All that changed after we got to the hospital this morning and Charlotta got changed into her blue hospital gown. That's when the anxious wailing began: "I want to go home. When can we go home? Mom will you take me home? Is it time to go home yet?" ... all accompanied by huge sobs. Nothing I could do or say would calm her down.
The anesthetist finally gave her an oral sedative... Which sort of worked. I was able to accompany her as she was wheeled into the operating room at just after 8am (I had to wear a scrub gown, hair cap and little booties over my shoes). Quite soon after we arrived in the OR, they started an IV in Charlotta's hand and then administered the medicine to make her go to sleep. It was only then that she finally settled down.
Now I'm sitting in the coffee shop and prepared for the long wait ahead. When I spoke with the surgeon this morning, he said he'd probably be finished around 8pm, but that I could check with the nurses station for an update after lunch.
Wednesday, May 25, 2011
Still on Track
It looks like we're still on track for Charlotta's surgery for Monday, May 30. I supposed I shouldn't count my chickens before we're actually at the hospital -- because any number of things could come up -- but I'm re-psyching myself up for Monday.
It's odd, actually, that I haven't thought much about the surgery since we got the postponement notice. I guess the smart part of my brain (wherever that may be!) realized that it wasn't productive to worry and fret about something that was out of my control. I'll save all my worrying for Sunday night.
In the meantime, we were able to have Charlotta's birthday at home, as well as sneak in a few amusement rides at the Cloverdale Rodeo this past weekend. We read in the pre-op information that after the surgery Charlotta would have to wait a year before being able to go on rides again (the jarring motion being not great for her back). Here's a pic of the kids on the Monster Truck Mania.
It's odd, actually, that I haven't thought much about the surgery since we got the postponement notice. I guess the smart part of my brain (wherever that may be!) realized that it wasn't productive to worry and fret about something that was out of my control. I'll save all my worrying for Sunday night.
In the meantime, we were able to have Charlotta's birthday at home, as well as sneak in a few amusement rides at the Cloverdale Rodeo this past weekend. We read in the pre-op information that after the surgery Charlotta would have to wait a year before being able to go on rides again (the jarring motion being not great for her back). Here's a pic of the kids on the Monster Truck Mania.
Sunday, May 15, 2011
Best Laid Plans...
So for the last few weeks, we've been preparing for Charlotta's May 16 surgery date. I'd made plans for co-workers to take over my projects at work in order that I could take three weeks off while she's in the hospital and recovering at home. After those three weeks, I was going to go to Toronto for a conference at which I'm giving a presentation. Steve had made plans to shift his work schedule as well while Charlotta was in the hospital. We've lined up grandparents to take care of Jack & Ashley, and I had prepared Charlotta's school for her absence.
This past Wednesday we had an all-day appointment at Children's Hospital to meet with the surgeon, get x-rays and bloodwork done, meet the physiotherapist, etc. The meeting with the surgeon was both informative and scary at the same time. It turns out Charlotta's surgery will be approximately 12 hours long, and the surgeon will make an incision in her side (under her arm) to perform the first part of the surgery, and then will make the main incision down her back to perform the major part of the surgery which involves attaching the rods to her vertebrae and fusing her spine.
Everything was in place -- we were prepared physically and mentally. Then, on Friday afternoon (did I mention it was Friday, the 13th?), we got the phone call we were dreading: Charlotta's surgery had to be postponed due to an emergency. We were going to be rescheduled for two weeks later, on May 30. Sigh...
Time to re-arrange our plans. I feel especially bad about having to bow out of the conference in Toronto. I'm scheduled to give a presentation with a co-worker, and now she'll have to give the presentation on her own. I'm sure she'll understand, but I feel like I've let her down.
The one good thing about having the surgery bumped is that Charlotta will now be able to celebrate her birthday at home, on May 19. Happy 11th Birthday, Sweetie!
This past Wednesday we had an all-day appointment at Children's Hospital to meet with the surgeon, get x-rays and bloodwork done, meet the physiotherapist, etc. The meeting with the surgeon was both informative and scary at the same time. It turns out Charlotta's surgery will be approximately 12 hours long, and the surgeon will make an incision in her side (under her arm) to perform the first part of the surgery, and then will make the main incision down her back to perform the major part of the surgery which involves attaching the rods to her vertebrae and fusing her spine.
Everything was in place -- we were prepared physically and mentally. Then, on Friday afternoon (did I mention it was Friday, the 13th?), we got the phone call we were dreading: Charlotta's surgery had to be postponed due to an emergency. We were going to be rescheduled for two weeks later, on May 30. Sigh...
Time to re-arrange our plans. I feel especially bad about having to bow out of the conference in Toronto. I'm scheduled to give a presentation with a co-worker, and now she'll have to give the presentation on her own. I'm sure she'll understand, but I feel like I've let her down.
The one good thing about having the surgery bumped is that Charlotta will now be able to celebrate her birthday at home, on May 19. Happy 11th Birthday, Sweetie!
Wednesday, May 4, 2011
Surgery Update
Well, we were hoping for a surgery date for Charlotta's scoliosis in April, and we got one in May. Not too bad for the Canadian medical system. Her operation will take place on Monday, May 16. Less than two weeks away!
I have to admit that I'm more anxious than relieved. It will be major surgery, and I'm worried about how she will get through the operation, as well as the whole recovery process. I'm also worried about her rehabilitation process, what her mobility will be and what her physical limitations will be. In a nutshell, I'm just plain worried.
I have to believe that everything will turn out for the best, and in the long run Charlotta will be better off having had the surgery. We have a pre-op meeting with the Drs next week, and I'm hoping to have some questions answered then. I have also spoken with another Mom whose daughter went through the same surgery last fall, and got quite a bit of information from her as well.
Another really neat thing happened to me last week. I was walking down our street, when I stopped to say 'hi' to the pastor's wife who lives down the street. We chatted for a few minutes and she asked how the kids were doing, and I said 'fine.' And then she asked again how Charlotta in particular was doing (like she knew what was on my mind!). I told her about the surgery and that I was a little worried and then, right there in the middle of the street, she said a prayer for Charlotta that everything would go well. I was so touched! Everything is going to be OK.
I have to admit that I'm more anxious than relieved. It will be major surgery, and I'm worried about how she will get through the operation, as well as the whole recovery process. I'm also worried about her rehabilitation process, what her mobility will be and what her physical limitations will be. In a nutshell, I'm just plain worried.
I have to believe that everything will turn out for the best, and in the long run Charlotta will be better off having had the surgery. We have a pre-op meeting with the Drs next week, and I'm hoping to have some questions answered then. I have also spoken with another Mom whose daughter went through the same surgery last fall, and got quite a bit of information from her as well.
Another really neat thing happened to me last week. I was walking down our street, when I stopped to say 'hi' to the pastor's wife who lives down the street. We chatted for a few minutes and she asked how the kids were doing, and I said 'fine.' And then she asked again how Charlotta in particular was doing (like she knew what was on my mind!). I told her about the surgery and that I was a little worried and then, right there in the middle of the street, she said a prayer for Charlotta that everything would go well. I was so touched! Everything is going to be OK.
Tuesday, March 1, 2011
Phew -- I'm glad that's over
I haven't been able to sleep in the last couple of days (or nights, actually) and have had that nervous feeling in my stomach as well. Stressed. Worried. Anxious. You name it, that's what I was feeling. And all because a nurse from the health department was coming to ask me a few questions about Charlotta.
About four years ago I had applied for a government program that provides funding for special needs kids to receive certain therapies such as speech therapy (which costs like $150/hour). Anyhow, in order to qualify for the funding, the child has to meet certain requirements and be dependent on an adult for basic needs such as dressing, washing, eating. A nurse comes out for a home visit to assess the child. Well, four years ago a nurse came out to assess Charlotta but we ended up being declined for the services. She was too independent, they said.
I was so hurt and shocked and disappointed that we were declined. I was mad, too. Not only did I have to justify Charlotta's needs to a person who didn't even know her, but they had no right to decline her because she truly did need help with all of those things. I was too devastated to even appeal the decision.
Fast forward four years. Last December we had an appointment with a wonderful doctor of Charlotta's who is a developmental pediatrician. He mentioned something in passing about the program I described above, and I said to him that we had applied but were declined. He was very surprised by that and encouraged me to apply again. Then he left our examine room for a few minutes to get a copy of the application form and he filled in all of the parts that a doctor had to fill in. I mailed in the form in January --- with a knot in my stomach.
Last week, I received a call from the department that manages the program. The nurse on the phone asked a few questions. Her: "Has anything changed since last time you applied?" Me: "No, but that's the point. My daughter is almost 11 years old and still struggles with washing herself and getting dressed by herself."
So, a home visit was scheduled for this afternoon. I preparation for this, we put her to bed late last night and woke her up early this morning. I'm also ashamed to admit that I didn't give her her anti-seizure medication this morning. All this so that she would not be at her best.
I picked up Charlotta from school early, and dreaded every minute until the doorbell rang. The lady who came was nice enough, and went through the extensive questionnaire about Charlotta's abilities in all the areas of personal care. About an hour later, she said that the committee would meet to review the assessments in a few weeks, but from what I had told her and what she observed, she thought Charlotta would be accepted into the program. Hallelujah!
I was relieved, but also angry at myself that I had to go to such lengths to bring out the worst in Charlotta. She's such a great kid, but just needs some extra help with things. As the parent of a special needs child, you spend most of the time celebrating the small accomplishments and milestones that they achieve. Then, in order to satisfy a government bureaucrat, you need to focus on all the things they can't do and how much different they are from typical kids.
Phew, I'm glad that's over with. Now I need a glass of wine...
About four years ago I had applied for a government program that provides funding for special needs kids to receive certain therapies such as speech therapy (which costs like $150/hour). Anyhow, in order to qualify for the funding, the child has to meet certain requirements and be dependent on an adult for basic needs such as dressing, washing, eating. A nurse comes out for a home visit to assess the child. Well, four years ago a nurse came out to assess Charlotta but we ended up being declined for the services. She was too independent, they said.
I was so hurt and shocked and disappointed that we were declined. I was mad, too. Not only did I have to justify Charlotta's needs to a person who didn't even know her, but they had no right to decline her because she truly did need help with all of those things. I was too devastated to even appeal the decision.
Fast forward four years. Last December we had an appointment with a wonderful doctor of Charlotta's who is a developmental pediatrician. He mentioned something in passing about the program I described above, and I said to him that we had applied but were declined. He was very surprised by that and encouraged me to apply again. Then he left our examine room for a few minutes to get a copy of the application form and he filled in all of the parts that a doctor had to fill in. I mailed in the form in January --- with a knot in my stomach.
Last week, I received a call from the department that manages the program. The nurse on the phone asked a few questions. Her: "Has anything changed since last time you applied?" Me: "No, but that's the point. My daughter is almost 11 years old and still struggles with washing herself and getting dressed by herself."
So, a home visit was scheduled for this afternoon. I preparation for this, we put her to bed late last night and woke her up early this morning. I'm also ashamed to admit that I didn't give her her anti-seizure medication this morning. All this so that she would not be at her best.
I picked up Charlotta from school early, and dreaded every minute until the doorbell rang. The lady who came was nice enough, and went through the extensive questionnaire about Charlotta's abilities in all the areas of personal care. About an hour later, she said that the committee would meet to review the assessments in a few weeks, but from what I had told her and what she observed, she thought Charlotta would be accepted into the program. Hallelujah!
I was relieved, but also angry at myself that I had to go to such lengths to bring out the worst in Charlotta. She's such a great kid, but just needs some extra help with things. As the parent of a special needs child, you spend most of the time celebrating the small accomplishments and milestones that they achieve. Then, in order to satisfy a government bureaucrat, you need to focus on all the things they can't do and how much different they are from typical kids.
Phew, I'm glad that's over with. Now I need a glass of wine...
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