Wednesday, March 17, 2010
Great news!
After a rough night where I spent hours wondering if I should bite the bullet and take Beans in, he has turned the corner! Last night he was only tolerating half rate/half strength tube feeds and was still having bad tummy issues with them, on top of the respiratory stuff. This morning he woke up and is MUCH improved! Today his cough is minimal and not nearly so barky and he has some energy back. It's simply amazing that he's getting over this without steroids or antibiotics. One more wonderful sign his health is improving! I'm loving it!
Tuesday, March 16, 2010
Sick Little Beans :(
Poor little Beans has another run in with his nemesis - croup. It started yesterday and was pretty mild. Today though it's kicking his little behind. Each hour it gets a little worse. Normally we deal with it at home. At 3:00 I called the pediatrician to see if he'd be willing to call in Decadron (steroids), but they wanted to see him instead. Unfortunately they stop seeing patients at 4:00 (!?!) and we live an hour away and would have to stop and pick Little Man up on the way. At this point we're going to try and hold out until tomorrow as our other option is UrgentCare or the ER. His temp is going up about .5 degrees each hour and he's getting breathing treatments every 2 hours. Thankfully Little Man has nursing tonight so if I do need to take Beans in, at least Little Man can stay home and his nurse can even get him on the bus tomorrow if needed. Hopefully this is just a bump and we can fight this off at home.
Sunday, March 14, 2010
Beach Day!!
Two posts in one day, yes. I had to share our fun time at the beach today though. First beach day of the year! :D It was just under 70 degrees and WINDY, but my two little sea monkeys couldn't resist the water. We stayed for a mere half an hour but that will be followed by many more beach days to come. Enjoy the pics!
Oh look how cute, Little Man is pulling Beans!
Here's my little imp, Beans, throwing a mudball at Little Man - this is their favorite beach sport ;)
Oh look how cute, Little Man is pulling Beans!
Oh no, wait a minute, that was Little Man pulling the board out from under Beans. Doh!
Here's my little imp, Beans, throwing a mudball at Little Man - this is their favorite beach sport ;)
Saturday, March 13, 2010
New Accessories
This week has been full of new "accessories" of one type or another. A few days ago Little Man got his new orthotics. He's worn orthotics for years now, varying between ones that come just above his ankles to ones that are hidden in his shoes. Most recently he had the most support the in-shoe ones could offer. Unfortunately, they haven't been providing enough support so we had to increase the support of his orthotics. Due to his hypotonia and hyperflexibility he frequently rolls his ankles and usually has back, hip, or knee pain which we're hoping to alleviate. He was casted a couple weeks back and what I thought the orthotist was describing was something like the Richie Brace shown here: 
but with an insert to help provide more support. While still quite obvious, I figured it looked more sports-like than special needs.
When we picked up his actual orthotics my stomach did one of those sink to the floor things where you smile and pretend that they're great because your son is actually excited for the help but on the inside you feel like a little part of your heart just tore open. There's no denying these are special needs. :( I know it probably sounds silly but I was hoping for discrete, not in-your-face.
The ankles are fully mobile up and down but won't allow side to side movement or rolling and they'll help him not hyperextend his knees as much either. The heels are built up which I think helps with the hyperextension too (?). The insert part you can kind of see in this pic, it's the front mose strap and the plastic that wraps around his foot. The outer orthotic goes under and up the side of the inner and then up his leg fairly close to his knee.
Shoes are quite a feat to find that fit over the orthotics, but we've found skater type shoes before. I was shocked when the orthotist said Little Man's insurance would cover special shoes that are extra deep to accommodate these. Unfortunately, they ordered the wrong size so they had to reorder them. They should get in this week and then he'll start wearing his new orthotics (AFOs for short) an hour at a time building up to wearing them all day.
I know they'll help him. I know he's been hurting and having tons of back and leg pain. I know he loves them and is happy with them. I even know Beans is jealous because he wishes he had some (he does not need orthotics of any sort, much to his dismay). But, the mommy part of me was glad they had to reorder the shoes to delay him wearing them. That mommy part secretly wishes we could just ignore the whole issue. But that same mommy part doesn't want her boy to be in pain any longer either. What a choice. BUT (yes, another but), the important part is that Little Man likes them and needs them and that's what all these mommy parts have to keep in mind.
I do have a little brag to tell you about. This past week was standardized testing week for both Little Man and Beans. Beans worked very hard on his tests each day and we're quite proud of what he's done. Little Man really, really struggled with this test last year. This year was a whole different story. His teacher did the test 1:1 with him and he has all the accommodations they allow (extra time, extra breaks, some parts can be read to him I think, alternate pencil, and not sure what else). Well this year, this amazing year, Little Man was compliant, paid attention, and on Thursday his teacher said he even requested a break when he needed one! HUGE steps for him! We won't have the results of either one for some time, but really, the results aren't the important part when you're dealing with ESE (special ed). Just the fact that they were both able to do the test is reason to celebrate!
Finally, I must share with you Beans' newest accessory. He's been wanting to take piano lessons for months. A special someone bought him this keyboard yesterday. He was so excited that he's already learned "Twinkle, Twinkle." Now presenting, for your viewing pleasure, World Famous Pianist - Beans :D
but with an insert to help provide more support. While still quite obvious, I figured it looked more sports-like than special needs.When we picked up his actual orthotics my stomach did one of those sink to the floor things where you smile and pretend that they're great because your son is actually excited for the help but on the inside you feel like a little part of your heart just tore open. There's no denying these are special needs. :( I know it probably sounds silly but I was hoping for discrete, not in-your-face.
The ankles are fully mobile up and down but won't allow side to side movement or rolling and they'll help him not hyperextend his knees as much either. The heels are built up which I think helps with the hyperextension too (?). The insert part you can kind of see in this pic, it's the front mose strap and the plastic that wraps around his foot. The outer orthotic goes under and up the side of the inner and then up his leg fairly close to his knee. Shoes are quite a feat to find that fit over the orthotics, but we've found skater type shoes before. I was shocked when the orthotist said Little Man's insurance would cover special shoes that are extra deep to accommodate these. Unfortunately, they ordered the wrong size so they had to reorder them. They should get in this week and then he'll start wearing his new orthotics (AFOs for short) an hour at a time building up to wearing them all day.
I know they'll help him. I know he's been hurting and having tons of back and leg pain. I know he loves them and is happy with them. I even know Beans is jealous because he wishes he had some (he does not need orthotics of any sort, much to his dismay). But, the mommy part of me was glad they had to reorder the shoes to delay him wearing them. That mommy part secretly wishes we could just ignore the whole issue. But that same mommy part doesn't want her boy to be in pain any longer either. What a choice. BUT (yes, another but), the important part is that Little Man likes them and needs them and that's what all these mommy parts have to keep in mind.
I do have a little brag to tell you about. This past week was standardized testing week for both Little Man and Beans. Beans worked very hard on his tests each day and we're quite proud of what he's done. Little Man really, really struggled with this test last year. This year was a whole different story. His teacher did the test 1:1 with him and he has all the accommodations they allow (extra time, extra breaks, some parts can be read to him I think, alternate pencil, and not sure what else). Well this year, this amazing year, Little Man was compliant, paid attention, and on Thursday his teacher said he even requested a break when he needed one! HUGE steps for him! We won't have the results of either one for some time, but really, the results aren't the important part when you're dealing with ESE (special ed). Just the fact that they were both able to do the test is reason to celebrate!
Finally, I must share with you Beans' newest accessory. He's been wanting to take piano lessons for months. A special someone bought him this keyboard yesterday. He was so excited that he's already learned "Twinkle, Twinkle." Now presenting, for your viewing pleasure, World Famous Pianist - Beans :D
Sunday, February 21, 2010
A Beautiful Day for a Hike
Today the weather was absolutely perfect, way too lovely to stay cooped up in the house. The boys and I took off to go hiking at Leon Sinks. Ever since I had kids I've planned on taking them hiking and they've never been strong enough or well enough at the same time to actually do it. Today was a much anticipated milestone. The boys had a great time hiking along the trail. They loved looking for the blue stripe on the trees or the blue arrow pointing the way. Some of the going was hard, with roots, sticks, and steep hills, but we loved it.
About half of the sinkholes were dry, but the ones that were wet were gorgeous! This one had water that was a beautiful green/blue color. We saw one that was red and several the normal "dark" water color.
I was a little bummed that we really didn't see any wildlife though. Lately Beans and I have seen two fox. One gray one on the way to pick Little Man up from school, and a red one when we were on the way to my anatomy class last week. I have to admit, I'd rather see no wildlife than a snake or other unfriendly beast though. ;)
Here's our goofy little family messing around on the trail. ;)
By about halfway the kids were pretty darn tired. Beans' legs would give out and he'd have to take a break for a bit. He was determined though and didn't let it get him down for long.
Little Man had a bit of a harder time, as you can see here. He was exhausted from much earlier. It may have been a better idea to wait until we pick up his new orthotics (March 5) but he was still a trooper. He was very attached to this giant pinecone. Despite tripping over his own feet every couple of steps, he dragged it all the way home.
We were all so proud when we finished. We plan on doing a lot more hiking. It's so beautiful and peaceful walking through the woods together.
About half of the sinkholes were dry, but the ones that were wet were gorgeous! This one had water that was a beautiful green/blue color. We saw one that was red and several the normal "dark" water color.
I was a little bummed that we really didn't see any wildlife though. Lately Beans and I have seen two fox. One gray one on the way to pick Little Man up from school, and a red one when we were on the way to my anatomy class last week. I have to admit, I'd rather see no wildlife than a snake or other unfriendly beast though. ;)
Here's our goofy little family messing around on the trail. ;)
By about halfway the kids were pretty darn tired. Beans' legs would give out and he'd have to take a break for a bit. He was determined though and didn't let it get him down for long.
Little Man had a bit of a harder time, as you can see here. He was exhausted from much earlier. It may have been a better idea to wait until we pick up his new orthotics (March 5) but he was still a trooper. He was very attached to this giant pinecone. Despite tripping over his own feet every couple of steps, he dragged it all the way home.
We were all so proud when we finished. We plan on doing a lot more hiking. It's so beautiful and peaceful walking through the woods together.Thursday, February 11, 2010
Checkups
Today both the boys had their annual checkups. Okay, so Beans is born in May and Little Man in October, but let's face it. They're at the doctors enough that I have to admit checkups just aren't the priority. Just before the kids have an appointment I prepare a sheet with their current meds, any new diagnoses, questions/concerns, and upcoming appointments with other doctors. It makes it so much easier to remember everything and keep the boys straight.
Last night I sat down to prepare their sheets. I had several things with Little Man - his reflux is back, asthma, this virus he's had for 3 weeks and can't kick, and a script for new orthotics. Then I did Beans' concerns. Or tried to. For the first time in his life, I didn't have a single thing to put under concerns for Beans!!! We're now 14 months past his last hospital admission and next month will mark 1 year free of ER visits! He's growing, learning, everything you could hope for. The few issues he is having we're waiting on ENT (next week) and genetics (March) to deal with. Wow!
Back to Little Man, he's a whopping 4'9 and 95 pounds! 75% height, 90% weight. A little on the chunky side but still well within range. I found the trick to taking him to appointments is bringing the laptop. He'll immerse himself in it and I don't have to try and chase down a wild alligator while we're waiting. ;) His eyes with glasses were both 20/25. Most everything checked out pretty well. His reflux is back, but really we knew this. He's starting back on Prevacid so that should help. His eczema is back, but that's due to him needing to wear Depends at night. The virus seems to be a sinus infection so he put him on Augmentin for that. He also has another rash that he got 2 creams for.
We discussed the obstructive sleep apnea and the pediatrician feels it's likely we'll need to treat it with CPAP (some sort of breathing device at nighttime) as his hypotonia is likely playing a large role in it. There's also hope, and a pretty good amount of it, that once we get the OSA controlled and he's sleeping better, his behaviors and some of the other health issues will improve and maybe we can go down on some of his meds. Wouldn't that be great? He has an appointment with the ENT on Tuesday to discuss the apnea so we'll see what he says.
Back to Beans, well, there's just not much to say. :D He's 4'3 and 51 pounds. 40% height, 15% weight. A little on the thin side but GREAT for him. The pediatrician does feel his genetic disorder is at least contributing to his issues, even if there's another disorder both boys have, or if Little Man has something else. I'm so hopeful that come time for Beans' IEP meeting in May that he won't even need an IEP (special ed services)! The pediatrician also said that's there's a good chance he can have his tube out in time for him to start dating, if we can find enough foods that he can and will eat. Wouldn't that be great???
To end the visit I finally consented to the kids getting both their seasonal and H1N1 flu shots. At that moment, Beans turned into a raving monster, and certainly not in a cute way. It was horrible. He was in fight or flight mode and there was no reasoning with him. Took 2 nurses to pin him down and quickly get the shots in. I won't go into details but let's just say it was an extremely embarrassing experience and I'm sure the office won't soon forget him.
When it was Little Man's turn he sat on the table, got to have it in his arm, didn't fuss, cry or fight and was just an angel. After the shots when Beans was still being a lunatic, the nurses let Little Man go up to the front office and gave him a sticker. He was such a good boy!
Tomorrow the kids are back at school then off for a three day weekend for President's Day. Once again I managed to schedule my very rare doctor appointment for a day the kids are out of school. This is an appointment they cannot come to so hopefully I can scrounge up a sitter last minute. Then Tuesday the kids both see the ENT about their sleep apnea.
I couldn't leave you without at least one pic of the kids so enjoy:
Thanks for checking in on us. :)
Last night I sat down to prepare their sheets. I had several things with Little Man - his reflux is back, asthma, this virus he's had for 3 weeks and can't kick, and a script for new orthotics. Then I did Beans' concerns. Or tried to. For the first time in his life, I didn't have a single thing to put under concerns for Beans!!! We're now 14 months past his last hospital admission and next month will mark 1 year free of ER visits! He's growing, learning, everything you could hope for. The few issues he is having we're waiting on ENT (next week) and genetics (March) to deal with. Wow!
Back to Little Man, he's a whopping 4'9 and 95 pounds! 75% height, 90% weight. A little on the chunky side but still well within range. I found the trick to taking him to appointments is bringing the laptop. He'll immerse himself in it and I don't have to try and chase down a wild alligator while we're waiting. ;) His eyes with glasses were both 20/25. Most everything checked out pretty well. His reflux is back, but really we knew this. He's starting back on Prevacid so that should help. His eczema is back, but that's due to him needing to wear Depends at night. The virus seems to be a sinus infection so he put him on Augmentin for that. He also has another rash that he got 2 creams for.
We discussed the obstructive sleep apnea and the pediatrician feels it's likely we'll need to treat it with CPAP (some sort of breathing device at nighttime) as his hypotonia is likely playing a large role in it. There's also hope, and a pretty good amount of it, that once we get the OSA controlled and he's sleeping better, his behaviors and some of the other health issues will improve and maybe we can go down on some of his meds. Wouldn't that be great? He has an appointment with the ENT on Tuesday to discuss the apnea so we'll see what he says.
Back to Beans, well, there's just not much to say. :D He's 4'3 and 51 pounds. 40% height, 15% weight. A little on the thin side but GREAT for him. The pediatrician does feel his genetic disorder is at least contributing to his issues, even if there's another disorder both boys have, or if Little Man has something else. I'm so hopeful that come time for Beans' IEP meeting in May that he won't even need an IEP (special ed services)! The pediatrician also said that's there's a good chance he can have his tube out in time for him to start dating, if we can find enough foods that he can and will eat. Wouldn't that be great???
To end the visit I finally consented to the kids getting both their seasonal and H1N1 flu shots. At that moment, Beans turned into a raving monster, and certainly not in a cute way. It was horrible. He was in fight or flight mode and there was no reasoning with him. Took 2 nurses to pin him down and quickly get the shots in. I won't go into details but let's just say it was an extremely embarrassing experience and I'm sure the office won't soon forget him.
When it was Little Man's turn he sat on the table, got to have it in his arm, didn't fuss, cry or fight and was just an angel. After the shots when Beans was still being a lunatic, the nurses let Little Man go up to the front office and gave him a sticker. He was such a good boy!
Tomorrow the kids are back at school then off for a three day weekend for President's Day. Once again I managed to schedule my very rare doctor appointment for a day the kids are out of school. This is an appointment they cannot come to so hopefully I can scrounge up a sitter last minute. Then Tuesday the kids both see the ENT about their sleep apnea.
I couldn't leave you without at least one pic of the kids so enjoy:
Thanks for checking in on us. :)
Friday, February 5, 2010
Heartbroken
I woke this morning to find that a little boy I have come to know over the years was losing his battle today. I met his mom on a support group when Ethan had similar issues to Beans. Ethan progressively lost all use of his GI tract and had a multi-organ transplant a few months ago. Today this little fighter has earned his wings. My heart breaks for his family. I cannot imagine facing your child's death. Please keep his family in your thoughts.
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