Monday, March 17, 2014
St. Paddy's Day and Josie's Bday
Today, we celebrated St. Patrick's Day and, just as importantly, Josie's birthday. As you can see, we really got into it. It's hard to believe that Josie is 6 years old. Too bad she still acts like an idiot. But, she's our idiot and we love her.
I made the full corned beef and cabbage dinner (complete with Irish Soda Bread) yesterday, and we used the leftovers for Bubble and Squeak tonight. It was a great day and the kids had fun.
2.5 year well visit
Seamus had his well visit to day. He is 31 lbs (61st percentile) and 37 inches tall (73rd percentile). He did great and is right on track. He lifted his shirt for Dr. Art so she could listen to his heart and lungs. He even thanked her for the checkup and for the book she gave him. Then the nurse came in to do a finger stick (to test for iron and lead). He didn't cry and bled abundantly. The nurse said she wished he could teach the other kids how to do it!
I cannot explain to you how different it is to go to a well visit with no worries and no concerns. I used to feel sick when they would hand me the sheet of paper to circle the abilities your child has achieved and to mark off areas of concern. I think I finally stopped filling those out for Eve because they were too painful. I cherish well visits with Seamus. It's such a pleasure to be able to take for granted that he is right on track. He's a happy boy and a total pleasure to be around. And, thank God, he's typical and healthy.
I cannot explain to you how different it is to go to a well visit with no worries and no concerns. I used to feel sick when they would hand me the sheet of paper to circle the abilities your child has achieved and to mark off areas of concern. I think I finally stopped filling those out for Eve because they were too painful. I cherish well visits with Seamus. It's such a pleasure to be able to take for granted that he is right on track. He's a happy boy and a total pleasure to be around. And, thank God, he's typical and healthy.
Wednesday, March 12, 2014
Dr visits for Eve
Yesterday, Eve had followup visits with her GI and Neuro. Here's the run-down:
GI - She's looking good and tolerating her feeds well. Her tube site looks great. I'll have to call the hospital the week before her GJ tube change, because there have been issues with patients not having a tube available when they show up. The doc is pretty mad about it.
She's 49lbs 6oz and 3 feet 8 inches tall. She's 5-10%ile for weight and less than 3rd%ile for height. I mentioned how her tummy hangs over her pants and how her hands are so plump, there is no definition of knuckles on the back of her hand. She's getting about 800 calories a day right now (the doc originally wanted her on at least 1200 calories last year). He said they use a calculation to figure out how many calories a child needs, and if there's a mistake, they usually give too much food. Which is the way to go if you are going to make a mistake. So he said we can do a resting metabolic rate test. They put her in a little oxygen tent and measure the oxygen she uses (and I really have no idea what else) and it will tell us her caloric needs. Here are some pictures of the last time she had it done. She was NOT happy about it, obviously. I think this time she will do so much better. Anyhow, we were able to schedule this test for the same day we go back for her tube switch (in about 3 weeks). I'm pretty confident it will show she's getting a little too much food right now. Nothing major, but I don't want her to slowly put on more and more weight and get uncomfortable. She's totally sedentary and her disease is all about a lack of energy, so the calories are just not getting burned.
Neuro - We then had our neuro appointment. I mentioned my concerns, namely the increasing pain and muscle spasms. He is switching up her med schedule in the afternoons. We're adding a 4th daily dose of Valium. We also talked about when to use morphine. I've been so apprehensive to use it because I'm afraid I'll be using the morphine to treat something more trivial. His advice was to just use it. The goal is to keep her comfortable and I shouldn't worry so much. He said it will take away her pain, not make her high. He also said she's not even close to the "safe" dose for her weight, so I don't need to worry about doping her up. It was super comforting to have that worry of the decision taken from me. I can just give her the morphine and not worry. So, that's good to know.
I also mentioned that she can no longer cry (it's been about a year and a half since she's done it) and that she's lost one of her reflexes in her feet. We talked about how her cheeks suddenly get red (or just one will) and how her feet can be ice blocks or really hot. He said that's part of her autonomic system dysfunction. He examined her and noted the changes. I told him we are going to Boston to see the mito doc in June. I mentioned a tremor that we've noticed in her stomach when laying flat. He said it's Clonus (a reflex-like tremor that's part of her neurological dysfunction) like we see in her legs and feet when you bend her foot back. I also mentioned how she has lost virtually all speech. She very rarely says Ah (yes) anymore, and I don't remember the last time she said uh-uh. He wants to see us back in 6 months.
Eve was super excited to see her neuro. She just loves him. She was squealing all morning and even "drew" a picture for him at school. He said he's going to hang it up in his office. All in all, it was a great visit. I'm happy about the metabolic testing and I'm hopeful that adding another dose of Valium will help to keep her pain in check. If not, I have the morphine.
GI - She's looking good and tolerating her feeds well. Her tube site looks great. I'll have to call the hospital the week before her GJ tube change, because there have been issues with patients not having a tube available when they show up. The doc is pretty mad about it.
She's 49lbs 6oz and 3 feet 8 inches tall. She's 5-10%ile for weight and less than 3rd%ile for height. I mentioned how her tummy hangs over her pants and how her hands are so plump, there is no definition of knuckles on the back of her hand. She's getting about 800 calories a day right now (the doc originally wanted her on at least 1200 calories last year). He said they use a calculation to figure out how many calories a child needs, and if there's a mistake, they usually give too much food. Which is the way to go if you are going to make a mistake. So he said we can do a resting metabolic rate test. They put her in a little oxygen tent and measure the oxygen she uses (and I really have no idea what else) and it will tell us her caloric needs. Here are some pictures of the last time she had it done. She was NOT happy about it, obviously. I think this time she will do so much better. Anyhow, we were able to schedule this test for the same day we go back for her tube switch (in about 3 weeks). I'm pretty confident it will show she's getting a little too much food right now. Nothing major, but I don't want her to slowly put on more and more weight and get uncomfortable. She's totally sedentary and her disease is all about a lack of energy, so the calories are just not getting burned.
Neuro - We then had our neuro appointment. I mentioned my concerns, namely the increasing pain and muscle spasms. He is switching up her med schedule in the afternoons. We're adding a 4th daily dose of Valium. We also talked about when to use morphine. I've been so apprehensive to use it because I'm afraid I'll be using the morphine to treat something more trivial. His advice was to just use it. The goal is to keep her comfortable and I shouldn't worry so much. He said it will take away her pain, not make her high. He also said she's not even close to the "safe" dose for her weight, so I don't need to worry about doping her up. It was super comforting to have that worry of the decision taken from me. I can just give her the morphine and not worry. So, that's good to know.
I also mentioned that she can no longer cry (it's been about a year and a half since she's done it) and that she's lost one of her reflexes in her feet. We talked about how her cheeks suddenly get red (or just one will) and how her feet can be ice blocks or really hot. He said that's part of her autonomic system dysfunction. He examined her and noted the changes. I told him we are going to Boston to see the mito doc in June. I mentioned a tremor that we've noticed in her stomach when laying flat. He said it's Clonus (a reflex-like tremor that's part of her neurological dysfunction) like we see in her legs and feet when you bend her foot back. I also mentioned how she has lost virtually all speech. She very rarely says Ah (yes) anymore, and I don't remember the last time she said uh-uh. He wants to see us back in 6 months.
Eve was super excited to see her neuro. She just loves him. She was squealing all morning and even "drew" a picture for him at school. He said he's going to hang it up in his office. All in all, it was a great visit. I'm happy about the metabolic testing and I'm hopeful that adding another dose of Valium will help to keep her pain in check. If not, I have the morphine.
Tuesday, March 4, 2014
night time with Seamus
We're slowly working on potty training with Seamus. One of the most frustrating things is that he poops in his diaper every single night about 30 seconds after we put him in bed and close the door. He used to poop on the potty (by accident and by trying), but now he refuses. I think it's a delay tactic, and it drives me insane. I don't want to make it into too big of a deal because I don't want to cause problems. We tried bribing him with sticker charts and prizes, but he won't do it. He will pee no problem. Tonight I completely gave up and just bought super cheap diapers. So, now he can poo in the cheap diaper and then we can change him and put the expensive night diaper on for the rest of the night.
Speaking of the rest of the night, he wakes up one or two times during the night. This happens about 4 nights during the week. I'm always the one that gets up because Jim is usually comatose. While it sucks to get out of bed and deal with a crying kid, it's not that bad. Last night he woke up at 4am. I get up, go into his room, sit on his bed and hug him for about 30 seconds. I kiss his head and put him back into bed. And that's it. So, at 4:03am I was back in my bed and thinking about how this is actually a very special time. He wraps his arms and legs around me like a little monkey and it is such a sweet experience of total love. He is also so different from his sister. She went through a few phases of waking up several times a night when she was his age and older. However, she would cry and cry. The second you started to leave the room she would start to wail. We often needed to let her cry it out a bit. With him, he's instantly comforted and happy to go back to bed. I'm not sure what wakes him up or why he cries, and I wish he didn't need me to come in. At the same time, I am treasuring these times while I still have them. I know that he won't be my little boy for much longer.
Speaking of the rest of the night, he wakes up one or two times during the night. This happens about 4 nights during the week. I'm always the one that gets up because Jim is usually comatose. While it sucks to get out of bed and deal with a crying kid, it's not that bad. Last night he woke up at 4am. I get up, go into his room, sit on his bed and hug him for about 30 seconds. I kiss his head and put him back into bed. And that's it. So, at 4:03am I was back in my bed and thinking about how this is actually a very special time. He wraps his arms and legs around me like a little monkey and it is such a sweet experience of total love. He is also so different from his sister. She went through a few phases of waking up several times a night when she was his age and older. However, she would cry and cry. The second you started to leave the room she would start to wail. We often needed to let her cry it out a bit. With him, he's instantly comforted and happy to go back to bed. I'm not sure what wakes him up or why he cries, and I wish he didn't need me to come in. At the same time, I am treasuring these times while I still have them. I know that he won't be my little boy for much longer.
Saturday, March 1, 2014
February break
The kids had school vacation the same week, so my mom came out to help. Thank goodness for her. We had lots of fun and it was a busy week. We got a new dishwasher, Jim was diagnosed with pneumonia, and the kids had a dentist appointment. Jim was doing great by the end of the week and is totally fine now. The kids were fantastic at the dentist. It was Seamus' first time and he was a total champ. He wasn't shy at all and opened wide when asked. He let the hygienist and doctor poke around in his mouth, and stick the mirror in there. He was happy as a clam sitting in the chair and watching the cartoons they had on. Eve was much more guarded (but still good). She made a face when the dentist painted on the fluoride and he said, "I know. It doesn't taste good." Then he told Seamus to open up and painted the fluoride on him. Seamus rubbed his tummy and said, "Mmmm.....good!!" He did so well that next time he gets to go "upstairs" for a longer and more technical appointment. The hygienist said he was "amazing."
Ignore the mess in the background, but focus on how Seamus is perched ON TOP of Jim. What a nut.
Ignore the mess in the background, but focus on how Seamus is perched ON TOP of Jim. What a nut.
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| Snuggle time |
More pain for Eve
For the past several weeks Eve has been showing signs of discomfort in increasing frequency and intensity. In the mornings or late afternoon (around 5pm) she sometimes just looks super uncomfortable. One knee will be drawn into her chest and her elbows will be bent with her arms rigid. If you move her leg or arms, her arms will tremor. I may have mentioned she no longer is able to cry. Instead, she laughs when she is in pain. It's a different sounding laugh than her funny laugh. There is a sharpness, or an edge to the pain laugh. She sometimes does this during these episodes.
Around Christmas, I mentioned to her neuro that we've been having to give her more booster doses of Valium for break-through pain. So, he increased her dose. Even after the increase, she's still been having these episodes. We've even had to give her morphine twice. So, Jim and I decided to switch up her med schedule. She's allowed the Valium every 4 hours with booster doses every 2 in between. We were giving the schedule doses at 8am, 12:30pm, and then not again until before bedtime at 6:30pm. We've started giving her the Valium at 5pm now (and not again at bedtime). That seems to help a bit in the afternoon. However, it doesn't help in the morning. This past week, the nurse had to give her a booster dose at school. Then, on Wednesday at lunchtime, Eve had a bad episode. Not only what she showing signs of pain, but she was moaning and had both knees drawn into her chest. This is what used to happen a year ago (and is why the morphine was prescribed), and she had never done this at school before. I thought we had gotten past these intense episodes. We see the neuro in a week and half, and I'll talk to him about our options and what we can do to ensure she is comfortable.
One other thing I need to talk to the neuro about is that she might have had two quick seizures yesterday at school. Eve had a substitute one-on-one, and she brought Eve to the nurse's office. She said that Eve's arms had started to tremor and that Eve rolled her eyes back into her head for about three seconds. Then it happened again for another few seconds. I've never seen this at home, but I suppose it is possible. I thought the nurse gave the one-on-one excellent advice: if it happens again, stroke Eve's cheek - if she snaps out of it, it wasn't a seizure. Whatever happened, it was strange enough that the one-on-one brought Eve to the nurse. So, I'll mention this to the doctor.
Around Christmas, I mentioned to her neuro that we've been having to give her more booster doses of Valium for break-through pain. So, he increased her dose. Even after the increase, she's still been having these episodes. We've even had to give her morphine twice. So, Jim and I decided to switch up her med schedule. She's allowed the Valium every 4 hours with booster doses every 2 in between. We were giving the schedule doses at 8am, 12:30pm, and then not again until before bedtime at 6:30pm. We've started giving her the Valium at 5pm now (and not again at bedtime). That seems to help a bit in the afternoon. However, it doesn't help in the morning. This past week, the nurse had to give her a booster dose at school. Then, on Wednesday at lunchtime, Eve had a bad episode. Not only what she showing signs of pain, but she was moaning and had both knees drawn into her chest. This is what used to happen a year ago (and is why the morphine was prescribed), and she had never done this at school before. I thought we had gotten past these intense episodes. We see the neuro in a week and half, and I'll talk to him about our options and what we can do to ensure she is comfortable.
One other thing I need to talk to the neuro about is that she might have had two quick seizures yesterday at school. Eve had a substitute one-on-one, and she brought Eve to the nurse's office. She said that Eve's arms had started to tremor and that Eve rolled her eyes back into her head for about three seconds. Then it happened again for another few seconds. I've never seen this at home, but I suppose it is possible. I thought the nurse gave the one-on-one excellent advice: if it happens again, stroke Eve's cheek - if she snaps out of it, it wasn't a seizure. Whatever happened, it was strange enough that the one-on-one brought Eve to the nurse. So, I'll mention this to the doctor.
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