Please enjoy the book, although the pictures don't do it justice:
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| (Jen is her one-on-one at school) |
Saturday, October 18, 2014
The Awesome Book.
One of the things that is so amazing about where we live is that the children here are incredible. Simply incredible. I never expected to have a child like Eve. Never in my wildest nightmares did I think I would have to watch her suffer through such challenges. But, never in my wildest dreams did I think she would have such wonderful, caring, and loving classmates who truly adore her. We are so very grateful for the love and genuine friendship. Yesterday, Eve came home with a book that her classmate, Grace, made for her. It's a tactile book, so that Eve can touch it and explore. The amount of thought and love (and work) that went into this is just staggering. We are truly overwhelmed. That little girl is an angel on earth with a heart of gold.
Please enjoy the book, although the pictures don't do it justice:
Please enjoy the book, although the pictures don't do it justice:
Thursday, October 16, 2014
Still waiting to hear about the referral to Shriner's. However, I did call the GI and ask to have Eve's feeds cut back since she gained 7 pounds in the last year (but no gains in height). After some miscommunication (he thought I was asking why she wasn't getting taller and told me to wait 6 months until our next appointment), they finally got the right message to him. AND...he agreed!! So, he told us to cut back her feeds from 20 hours per day to 18 hours per day. I don't know why I was thinking of reducing the feeding rate (and time spent getting food), but this is better! It will give her body a 6 hour break from doing the work of digesting and it gives her more time to be free of the tube and backpack/pump.
She's been doing well since last Saturday. It has been warmer these past few days...
(side note: I saw a post this morning on FB about the "unreasonable heat and humidity"...well, they actually said "unseasonable," but I think my brain substituted the better word)
...so she hasn't been as tight. I did buy a space heater for her bedroom to help when we are changing her clothes in the morning or after a bath so she won't stiffen up. We're supposed to get a cold snap on Sunday.
She's been doing well since last Saturday. It has been warmer these past few days...
(side note: I saw a post this morning on FB about the "unreasonable heat and humidity"...well, they actually said "unseasonable," but I think my brain substituted the better word)
...so she hasn't been as tight. I did buy a space heater for her bedroom to help when we are changing her clothes in the morning or after a bath so she won't stiffen up. We're supposed to get a cold snap on Sunday.
Thursday, October 9, 2014
What a week...
On Saturday, we had to take Eve to the ER. She had a really bad pain episode and the morphine wasn't touching it. She was in her wheelchair, getting ready for bed. Jim brushed her teeth and then suddenly, she got all stiff and was in pain. She gagged and then retched. I gave her the dose of morphine, but 15 minutes later she had no relief. So I called the neurologist to double check if I could give her the booster dose (she said yes). I then gave her the scheduled other meds (which included Valium) and watched her. If I even tried to move her legs, she cried out in pain and her arms shook. We got her out of her chair and laid her in her bed while I waited to hear from the pediatrician about whether or not we should go to the hospital. She was like a little statue frozen in fetal position and when we changed her diaper it was very painful for her.
By the time we got to the ER, she was doing a bit better. The staff there were wonderful. The doctor ordered bloodwork and a urine culture. He said he wanted to look for things that would make her go downhill fast. I warned them she was a "hard stick," and boy was I right. It took 5 tries to get enough blood to test. The urine showed bacteria, but they never sent out the sample for a culture (who knows what happened), so I don't know for sure. But I don't think this is a UTI. They had a hard time getting the catheter in, so maybe it wasn't the cleanest catch. All tests came back normal, so they sent us home.
Sunday, she was super super stiff. She seemed in pain, but her regular doses of Valium seemed to help. I also increased her Miralax because I suspected that she could be constipated which could be adding to what ever is going on. She did much better starting Monday, though still tight and stiff in the hips.
Yesterday (Wednesday), we went to Springfield for her scheduled neurology appt. I expressed my concerns: She has such incredible difficulty holding up her head, the increased gagging, the possible seizure last month, her pain and tightness (making it difficult to change her diaper and dress her), she's less responsive (not as quick to smile sometimes), she's sleepier (she fell asleep in her chair both Tuesday and Wednesday afternoon) etc. He can't do anything about her head hanging- that's a job for wheelchair equipment, but he acknowledged that the simplest fix (tilting back her wheelchair) wouldn't work because it would cause her to gag. The gagging is a reflex that is exaggerated, like many of her other reflexes (e.g., clonus) and is typical of kids like her or those with CP. He said some people think you can use medicines to target that, but he doesn't think they work. He's not worried about the seizures unless they become numerous or are convulsive. Up until now they have been absence seizures. He increased her Valium dosage to help with tightness and has referred us to a physiatrist at Shriner's Hospital. He thinks it's time for Botox injections to target specific muscles and relax them. So, we're waiting for an appointment for that. I left feeling good. He apologized for not having fixes for me, but I told him I was glad we at least had a direction to go in with this new doc. I didn't feel helpless.
Today, we had our well visit with our pediatrician (whom I adore). It was a great visit with laughter and tears (for both of us). Amazingly, Eve hasn't seen her in a year. That is testament to how healthy she's been lately. She gave Eve a flu and pneumonia vaccination. She also shared with me what the ER doc wrote in Eve's file. He said that Eve was "exceptionally cared for" by her family. I was touched. That's kind of incredible. I think of myself as just doing what anyone else would do for her. And I know I'm not perfect. I could always be a better mom to her. But, it was really nice to hear.
So....just as I was thinking we have restored balance to our life, she had a repeat episode tonight. Just like on Saturday. Jim brushed her teeth, and then all of a sudden, she had a pain spasm. Her legs got stiff and she pulled them up to her chest. Her arms got stiff and shook. She gagged. She was moaning in pain. I was just about to give her the night meds (which include the increased dose of Valium), so I went ahead and did that. I left her tube in, in case I needed to add a dose of morphine, and got her into bed. I tried venting her tube in case she had air in her stomach (there was none). As I changed her diaper and clothes, she seemed to get more comfortable. We put her to bed, and she is sleeping pretty comfortably, but her knees are still drawn up a bit. It was just pretty weird because it was so similar to Saturday night (even with the gagging). It makes me wonder if we should have gotten her out of her chair sooner on Saturday - but we were worried about the gagging and retching.
I don't know. I don't know what's going on with her. I'm worried (more that I was this morning), but I feel like this new direction of investigating injections is comforting. What a week.
By the time we got to the ER, she was doing a bit better. The staff there were wonderful. The doctor ordered bloodwork and a urine culture. He said he wanted to look for things that would make her go downhill fast. I warned them she was a "hard stick," and boy was I right. It took 5 tries to get enough blood to test. The urine showed bacteria, but they never sent out the sample for a culture (who knows what happened), so I don't know for sure. But I don't think this is a UTI. They had a hard time getting the catheter in, so maybe it wasn't the cleanest catch. All tests came back normal, so they sent us home.
Sunday, she was super super stiff. She seemed in pain, but her regular doses of Valium seemed to help. I also increased her Miralax because I suspected that she could be constipated which could be adding to what ever is going on. She did much better starting Monday, though still tight and stiff in the hips.
Yesterday (Wednesday), we went to Springfield for her scheduled neurology appt. I expressed my concerns: She has such incredible difficulty holding up her head, the increased gagging, the possible seizure last month, her pain and tightness (making it difficult to change her diaper and dress her), she's less responsive (not as quick to smile sometimes), she's sleepier (she fell asleep in her chair both Tuesday and Wednesday afternoon) etc. He can't do anything about her head hanging- that's a job for wheelchair equipment, but he acknowledged that the simplest fix (tilting back her wheelchair) wouldn't work because it would cause her to gag. The gagging is a reflex that is exaggerated, like many of her other reflexes (e.g., clonus) and is typical of kids like her or those with CP. He said some people think you can use medicines to target that, but he doesn't think they work. He's not worried about the seizures unless they become numerous or are convulsive. Up until now they have been absence seizures. He increased her Valium dosage to help with tightness and has referred us to a physiatrist at Shriner's Hospital. He thinks it's time for Botox injections to target specific muscles and relax them. So, we're waiting for an appointment for that. I left feeling good. He apologized for not having fixes for me, but I told him I was glad we at least had a direction to go in with this new doc. I didn't feel helpless.
Today, we had our well visit with our pediatrician (whom I adore). It was a great visit with laughter and tears (for both of us). Amazingly, Eve hasn't seen her in a year. That is testament to how healthy she's been lately. She gave Eve a flu and pneumonia vaccination. She also shared with me what the ER doc wrote in Eve's file. He said that Eve was "exceptionally cared for" by her family. I was touched. That's kind of incredible. I think of myself as just doing what anyone else would do for her. And I know I'm not perfect. I could always be a better mom to her. But, it was really nice to hear.
So....just as I was thinking we have restored balance to our life, she had a repeat episode tonight. Just like on Saturday. Jim brushed her teeth, and then all of a sudden, she had a pain spasm. Her legs got stiff and she pulled them up to her chest. Her arms got stiff and shook. She gagged. She was moaning in pain. I was just about to give her the night meds (which include the increased dose of Valium), so I went ahead and did that. I left her tube in, in case I needed to add a dose of morphine, and got her into bed. I tried venting her tube in case she had air in her stomach (there was none). As I changed her diaper and clothes, she seemed to get more comfortable. We put her to bed, and she is sleeping pretty comfortably, but her knees are still drawn up a bit. It was just pretty weird because it was so similar to Saturday night (even with the gagging). It makes me wonder if we should have gotten her out of her chair sooner on Saturday - but we were worried about the gagging and retching.
I don't know. I don't know what's going on with her. I'm worried (more that I was this morning), but I feel like this new direction of investigating injections is comforting. What a week.
Saturday, October 4, 2014
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