Just a quick update. Jenelle was sick a week ago with a fever and small cough. Luckily, even with a high fever, her seizures remained very stable. Recently however, Jenelle has been losing a lot of hair on her right side. It started a few weeks ago coming out in clumps, and then we discovered it was because she is pulling at it when her fingers get tangled in her hair. Poor thing has a very small bald spot on her right side and you can definitely see the difference when I put pony tails in her hair (the right side pony is definitely smaller!) I have never attempted to cut her hair, but it is so lopsided it is in desperate need of a trim. Brett thinks its cute and I think it looks more like "flock of seagulls" (for those of you that survived the 80s, you'll know what that means!) Always one thing or another. At least it is only hair, and it will grow back.
Also, I have a very heavy heart this morning. Please keep our friends, the Casey Family, in your thoughts and prayers as they mourn the loss of their daughter and niece Molly. Molly had Hydrocephalus and special needs and endured so much in her short life. She was an inspiration to us all with her courage. We are so very sad to hear of her passing and ask that you send special prayers up for her amazing family.
Monday, July 21, 2008
Tuesday, July 08, 2008
Three moments in Little League ...
While watching one of the Little League All Star Championship games this weekend, I ran into a Majors Coach from our League who, along with his team of 12 year olds, participated as Buddies at one of Jenelle's Challenger Games earlier this year. When he saw me, he thanked me again for the wonderful opportunity his son had to interact with the special needs kids. I told him that I was thankful to him for the help, but he said, "No, let me tell you how that buddy experience impacted my son's life."
His son is 12 and thus in his last official year of Little League (before going onto juniors, etc.) A friend of theirs is an amature photographer and took photos at each and every one of his son's games this year. A few weeks ago, that friend brought over her photos, and told his son to pick the three he wanted to keep to memorialize his Little League career. His first choice of course was his first home run. His second photo choice, a photo of him pitching. Of course, the two classic things you think of in baseball - home runs and pitching. His last choice? The photo of him pushing Jenelle in her wheelchair around the bases.
The Dad says his son talks about that Challenger game all the time, and how inspired he was by the kids and how they played. Of all the moments in a lifetime of playing baseball, that was one of three he wanted to cherish forever.
His son is 12 and thus in his last official year of Little League (before going onto juniors, etc.) A friend of theirs is an amature photographer and took photos at each and every one of his son's games this year. A few weeks ago, that friend brought over her photos, and told his son to pick the three he wanted to keep to memorialize his Little League career. His first choice of course was his first home run. His second photo choice, a photo of him pitching. Of course, the two classic things you think of in baseball - home runs and pitching. His last choice? The photo of him pushing Jenelle in her wheelchair around the bases.
The Dad says his son talks about that Challenger game all the time, and how inspired he was by the kids and how they played. Of all the moments in a lifetime of playing baseball, that was one of three he wanted to cherish forever.
Friday, June 20, 2008
New Equipment & Stuff
Just a quick update. Jenelle got her new AFOs on Monday. The jury is still out on whether or not we like them, but so far she seems to walk better with them. I'm waiting to see what her Physical Therapist says today. The new AFOs have a shorter foot plate then what we had on the old ones (i.e. her toes stretch out past the plastic - something I usually know to look for when its time to order new ones!) In fact, the first thing that came to mind was that if I took another photo of all her AFOs lined up (like above) they would appear smaller. How horrible is it that my first thought is that this new equipment for Jenelle won't look good on her blog! Anyway, the goal with this new design is to get Jenelle to plant her weight on her heel. So far things look good. I'll post photos when I can so you can see the difference.
Not sure if I had mentioned this previously, but we had been waiting for a wheel chair repair on Jenelle's main wheelchair that she uses for bus transportation. Back in April, the foot rest broke off at the metal. Jenelle cannot ride the bus without her foot restraints (bus transportation's rule.) Luckily, our "other" wheelchair we have (the purple one you see most frequently in photos) also has the ability for bus transport, so we've been OK. Well, after waiting for insurance approval to check it out for repair, and taking time off to wait for the repair man, we got some rather bad news. The chair is over 5 years old and the warranty is expired. It was previously purchased by my former insurance, so the new insurance won't cover any repairs, and Jenelle has out grown it. That last part we expected because she has had that first chair since she was 18 months old. Now we have to go through an authorization request for a new wheelchair for Jenelle. Good times! Thankfully we have the back up so it won't disturb her school schedule.
And, speaking of school... There are a lot of things are going on right now in regards to a possible change in Jenelle's services. Unfortunately, I can't say much more than that. Please keep us in your good thoughts on Wednesday, June 25 in that regard as we fight the good fight.
That's all for now. Thanks for your continued thoughts and prayers.
Not sure if I had mentioned this previously, but we had been waiting for a wheel chair repair on Jenelle's main wheelchair that she uses for bus transportation. Back in April, the foot rest broke off at the metal. Jenelle cannot ride the bus without her foot restraints (bus transportation's rule.) Luckily, our "other" wheelchair we have (the purple one you see most frequently in photos) also has the ability for bus transport, so we've been OK. Well, after waiting for insurance approval to check it out for repair, and taking time off to wait for the repair man, we got some rather bad news. The chair is over 5 years old and the warranty is expired. It was previously purchased by my former insurance, so the new insurance won't cover any repairs, and Jenelle has out grown it. That last part we expected because she has had that first chair since she was 18 months old. Now we have to go through an authorization request for a new wheelchair for Jenelle. Good times! Thankfully we have the back up so it won't disturb her school schedule.
And, speaking of school... There are a lot of things are going on right now in regards to a possible change in Jenelle's services. Unfortunately, I can't say much more than that. Please keep us in your good thoughts on Wednesday, June 25 in that regard as we fight the good fight.
That's all for now. Thanks for your continued thoughts and prayers.
Saturday, June 07, 2008
Dinner with our favorite doctor!
Friday night, we had dinner with our favorite new doctor who just happened to be vacationing with her Mom in California. We celebrated her graduation and completion of 6 long years to get her Bachelors and Medical Degree! Danielle was amazed at how much Jenelle has grown since she visited us in January 2007. Here are some wonderful photos from last night.
Sunday, June 01, 2008
Challenger Championship!
"Look at me... I can be ... Centerfield!"
Three Generations of Currans on Curran Field!
Play Ball!
Grandpa's proud moment honoring Jenelle on Curran Field!
Wednesday, May 28, 2008
No, not feeling it ...
I always notice the looks and stares. They come from everywhere; some quizzical, some with an all knowing smile, and some with looks of pitty. Every once in a while the stares coming from a child or a group of children. It is times like this that I am thankful that Jenelle is not aware of it at all.
When a child asks questions about Jenelle, I always try to answer them to the best of my ability in a way to make the child understand Jenelle. For children under age 5, this could be answered simply by saying "she has a broken brain." But perhaps as Jack gets older, our audience gets older as well. The questions are more in depth. I try to answer them all, but sometimes I'm just not feeling it. Last night was one of those times.
We were watching the Championship Game for the 8 year old Division of Little League. The side lines were packed for this exciting game, and children were running everywhere. I stood with Brett on the side lines while Jenelle quietly sat in her wheelchair doing her usual things; playing with her hair, making noises, and/or batting at the toy piano we brought along. She was very much in her own world and oblivious to the game.
Suddenly, I noticed a group of four younger girls sitting a few feet in front of Jenelle. It was not hard to miss them. They had their backs to the game, and their eyes staring at Jenelle. I thought to myself that they were probably the same age, and probably wondering what was "wrong" with Jenelle. And as they sat, I could see they were gaining confidence, and ready to pounce on me with questions at any second.
Normally, I would welcome questions and answer them best I could, but last night was different. I just wasn't feeling it. I wanted to enjoy the game. And just as they stood up to approach me, I grabbed the handle of Jenelle's wheelchair and walked away. As I did this, they followed me with a quickness in their step. I laughed to myself as I realized I was being chased. Then one little girl screamed out, "Why does she have to sit in that?" I ignored her, and finally found refuge with another parent I knew, and then the girls left us alone.
I felt horrible, but at the same time annoyed. I know their parents wouldn't have answers any better than the ones I would have. But I just wasn't feeling it. Feeling miserable, I confessed to the parent about what I had done, and he smiled and said, "I'll bet you get that a lot, and it's OK not to answer sometimes."
I'm sure this will get harder as the kids get older. And in any other situation I am all for anyone asking questions. But to be bombarded by four, 5 year old girls while trying to enjoy a Little League game was just to much. I will give that lesson some other day. And it's OK. I'm human that way.
When a child asks questions about Jenelle, I always try to answer them to the best of my ability in a way to make the child understand Jenelle. For children under age 5, this could be answered simply by saying "she has a broken brain." But perhaps as Jack gets older, our audience gets older as well. The questions are more in depth. I try to answer them all, but sometimes I'm just not feeling it. Last night was one of those times.
We were watching the Championship Game for the 8 year old Division of Little League. The side lines were packed for this exciting game, and children were running everywhere. I stood with Brett on the side lines while Jenelle quietly sat in her wheelchair doing her usual things; playing with her hair, making noises, and/or batting at the toy piano we brought along. She was very much in her own world and oblivious to the game.
Suddenly, I noticed a group of four younger girls sitting a few feet in front of Jenelle. It was not hard to miss them. They had their backs to the game, and their eyes staring at Jenelle. I thought to myself that they were probably the same age, and probably wondering what was "wrong" with Jenelle. And as they sat, I could see they were gaining confidence, and ready to pounce on me with questions at any second.
Normally, I would welcome questions and answer them best I could, but last night was different. I just wasn't feeling it. I wanted to enjoy the game. And just as they stood up to approach me, I grabbed the handle of Jenelle's wheelchair and walked away. As I did this, they followed me with a quickness in their step. I laughed to myself as I realized I was being chased. Then one little girl screamed out, "Why does she have to sit in that?" I ignored her, and finally found refuge with another parent I knew, and then the girls left us alone.
I felt horrible, but at the same time annoyed. I know their parents wouldn't have answers any better than the ones I would have. But I just wasn't feeling it. Feeling miserable, I confessed to the parent about what I had done, and he smiled and said, "I'll bet you get that a lot, and it's OK not to answer sometimes."
I'm sure this will get harder as the kids get older. And in any other situation I am all for anyone asking questions. But to be bombarded by four, 5 year old girls while trying to enjoy a Little League game was just to much. I will give that lesson some other day. And it's OK. I'm human that way.
Tuesday, May 27, 2008
Headphones
These headphones were recommended by another Special Needs parents on one of my support boards. They are child sized and relatively inexpensive.
Click here to order.
Click here to order.
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