I Love You.
Tuesday, July 20, 2010
Saturday, July 17, 2010
Hula Scootin'
AJ likes to keep his left side tucked in. He doesn't like to extend his ribcage, lengthen his left side, or anything of the sort. In an effort to make lengthening "fun" and to strenthen his arms and upper body, his PT and SLP (for feeding-she does NDT stuff too) introduced him to this scooter board and hula hoop fun. By the way, thats his SLP pulling him around.
He LOVES it.
Unfortunately I have not yet mastered taking a picture of
AJ while he's on the board and I'm pulling him here at home. Have no worries, he loves this activities and
AJ while he's on the board and I'm pulling him here at home. Have no worries, he loves this activities and
voluntarily switches from his tummy to the sitting position (pictured above)
AJ also uses a scooter board during his school PT time,
so OF COURSE, I did a search on scooter boards online.
Craziness.
I think anything tied to therapy has a gazillion dollar mark-up. The cheapest I could find was $100.
Until I went to one of my favorite stores, Big Lots.
It's one of those stores, like my other favorite,
Tuesday Morning, where you never know what your going to find.
I found this:
Looks like a scooter board to me, don'tcha think?
It works great!
The only thing that is kind of a pain, is that its made from mdf/pressboard, so we need to make sure we bring it inside after we've used it outside in the driveway.
Other than that, its awesome!
Oh, and how about that $10 price tag? YAY ME!
Thursday, July 15, 2010
Swirling & Twirling
I have this piece of posterboard on AJ's bedroom door. Bright red. Easy to spot. With nothing on it.
I had intended to write down all the fun activities we planned on doing this summer all in one place. I saw the idea a while ago an a few crafty blogs Istalk have marked in my favorites.
There it sits. Blank.
Because driving to and from therapies, doctor's appointments, and summer school is not fun. At least not in my book.
My brain is literally swirling and twirling so much I can't seem to focus, relax, or any of the things I am commonly told to just do and I'll feel alllll better.
What exactly is swirling and twirling?
I'm frustrated that we can't put a pool in our gigundo yard. Apparently out lot is too wide and shallow and our lot lines don't leave much give for putting up a above ground molded plastic liner pool. The whole point was to avoid dragging AJ to another appointment for aquatic therapy at a neighboring city's pool. Over the last few weeks, I've seen a few pools that are clearly not abiding by the regs and you know what? I ordered a smaller pool and we'll see if we can stick that sucker in the backyard. Although, I'm not sure with our mosquitos. If not, we've asked some family friends if we can bring him to swim in their pools every now and then.
At our appointment last week, AJ's CP doctor told me he should be doing lots of swimming (more on this below), and my heart just sunk.
I'm frustrated we have this gigundo yard and can't use it. One word: mosquitos. Ugh. It makes me miss living in "the city". We really aren't that far out, but far enough that our neighbors wear mosquito netting while cutting the grass. The mosquitos favor AJ's sweetness especially (he's so cute how could you not?), but seriously?! We keep our lawn cut, as do our neighbors, and we have one of those bug zapper things that is full of dead mosquitos each and every morning. It's still not enough. If anyone has ever wondered why we don't have a patio set, or sit outside EVER, this is why. A pretty hefty breeze needs to be blowing for us to be out and about.
fgggdff **That was our yellow lab nudging me. I forgot to feed them this morning. Hang on.
I feel bad that forgetting to feed the dogs has happened a lot recently. I feel bad that the most common words I use with them are no, lay down, out, get, and go potty. They don't get to play outside as much, due to AJ's schedule and, you guessed it, those darn mosquitos. I never understood why some people would "get rid" of their dog after having a child. While I would never do that, I now understand it-to a point. Trying to meet AJ's needs and all of our animals needs has become increasingly challenging. It does not mean I don't love them or want them, because Lord knows we love our animals, but its a challenge having 4 animals and AJ.
I'm hoping and praying it doesn't storm tonight. Ever since the big storm a few weeks ago...I am terrified of storms. I read someone's facebook post last night about the storm coming in and from that moment on could not calm down. That big storm shook me to my core. Jeremy did everything in his power to calm me down, but I was still distracted, looking out the window every 5 seconds until it got dark. I really, really, really need some good sleep.
I just remembered I need to pick up that receipt from the optical store today. Ugh. For our flex spending this year, they gave us something called a Benny card. Its really quite neat. It has the amount you determined for your yearly flex spending, and you use it like a debit card. Well, our card was suspended until we can provide an itemized receipt for AJ's lens in his glasses. Really? What else would I buy at an optical store people? To say the optical store has been helpful, would be lying.
In the 2.75 mile stretch from AJ's therapy clinic to home today, I pulled over 5 times to put his glasses and ears back on. I've had it. I'll keep doing it until he gets the clue we keep these things on in the car. While it would be great to have someone sit in the back and monitor him, I can't have someone doing that everyday, so that plan doesn't work.
AJ's been extremely sassy this week. We've stopped rolling him on his back on the yoga ball because its reminded him of how it feels to hyperextend. He's hyperextending all over the place and laughing/giggling to get out of work. Sometimes he extends so hard his implants fall off-and he knows it-so he laughs. I'm a very frustrated mom right now. Its sooooo not funny. His listening skills are out the window. He's pushing buttons, and reaching for things despite the word "no" being used intensly.
Go ahead, laugh. While you think its funny, I do not.
I'm thrilled AJ's doing so well with his Auditory Skills Development. Today was our 4th visit and of course, I tell her he's doing this wonderful skill, and he chooses not to do it. Which is common, I know. But this is AJ's pattern, and it has become increasingly frustrating when I say he can do something and no one believes me. Oh, Auditory Skills Development. ASD I call it. What is it? Its basically AV, but we can't call it AV since we aren't following all 10 of the principles. He is doing AMAZINGLY well. I'll blog about this more later.
Today was ASD, and like an idiot, I scheduled feeding therapy right after. We left ASD late, and as I'm running across the parking lot putting AJ in the car, I'm calling the therapy clinic to tell them we'll be late, like 20 minutes late, and I know it will be a short session, thats ok, I'm ON MY WAY! We arrive, and I learn that they had our appointment 15 minutes later than what was on my calendar, so we were ok anyhow. We're there so much, they said I should work there. Not only that, but I don't check in, they know me by name, and we just walk back to the bathroom when we need to. Its very casual. I took AJ into the bathroom so he could go before he ate lunch with his feeding therapist, and of course, he starts whining. He wants to skip the potty and go eat. Understandable but at this point, the whining was annoying and I hit my limit.
The tears welled up as I pushed my hands on the peach tile wall, closed my eyes, and recited the serenity prayer. Moments like that and days like today are often too much to handle. And it just doesn't stop. After a rockin' feeding session, which included some new "Torchin' Tamale" pringles, we came home and once the whining resumed, I put him down for a nap.
I think I'm still reeling from AJ's appointment with his latest addition, an orthopedic surgeon earlier this week. I wasn't nervous going in, since I know the man. We all met in Guatemala. You see, Jer and I adopted AJ at the same time his daughter and husband were adopting their son. The boys were one bassinett away from each other until they came home. This surgeon was there in his "Grandpa" role. His daughter and I are good friends. We have a unique friendship, in that we adopted "together". Same country, same place, same country, same timing. She's always had this zen about her, I wish I could possess for even just an hour.
AJ will be getting botox in his calf next week. This decision was not made lightly, and was made by myself, AJ's CP doctor, and the orthopedic surgeon. The botox isn't as big of a deal as I thought it was, which is where the whole "knowledge is power" thing comes into play. Well do this, and see what happens. AJ's not only got a foot thing going on, he's got a bone thing too. Yep, you guessed it. I'll blog more about this later.
Sseing the ortho took me back to Guatemala. Where I was silently comparing our kids in the courtyard while simultaneously enjoying the fountain. God, I will never forget the sound of that fountain...mixed with the robust sound of the city buses. It made me wonder if he "knew" when he saw AJ that something was wrong. It also flooded my mind with memories of what we thought would be, and that...has been hard. In early August, AJ will have been home for 3 years. When and how that happened, I don't know. But this time of year is always celebratory, and yet still holds a sadness for Jeremy and I. A sadness that no one else can understand but he and I. A panic, a trauma, a love so deep for this child that only grew deeper as we began our journey into parenthood
We don't often see the CP world. What do I mean? Well, we are immersed more into the world of hearing loss than we are with CP. So when I see another CP Mom, I watch her like a hawk and ask a billion questions. In my head of course. Her son was in his chair (which wasn't a wheelchair but not a stroller either) and the big/little (I'm not sure) was there with her. Again, with the tears. At Mom's gentle request, the brother started wheeling the other brother around so Mom could finish the paperwork. We want so badly for AJ to have a sibling. How wonderful it would be for him, and for that sibling. I stifled my tears as I noticed AJ was playing with the toys that were set up in the waiting room. Another momentus occassion. He was enjoying himself. I find myself never understanding why expanding our family has been and continues to be such a battle. I've posted on this before, so I won't drone on about it. But it does bring me a great deal of heartache, and seeing that Mom with another special needs child, + 1 was bittersweet.
We're torn between a rock and a hard place with school/therapy related things for AJ. While I won't go into specifics, my mind is constantly swirling, thinking, and re-thinking. I'm constantly thinking of things for him to do, to reach his goals, and surpass them, but our days are full of therapies, and sometimes, I'm just too damn tired. I can't do it all. And yes, I KNOW I CAN'T DO IT ALL. But when you are constantly being told what he isn't doing, you feel a sense of responsibility to get him to that place, especially when you BELIEVE HE CAN. That line, "He's where he is today because of you two, his parents," carries a lot of weight. if we weren't advocating for him, I can imagine the comments that would come flying out of people's mouths. AJ needs to be pushed. Jeremy and I know, all too well, what happens when we don't push AJ. Even things as simple as us forgetting to brush him in the morning, or not reading books at night. All of those "simple" things mean so much more in AJ's world.
AJ's world. It terrifies me to think of what would happen to AJ if we weren't here. If something should happen to both of us, what would happen to AJ? This question was one of the reasons we went to the Guardianship seminar a few months ago. While it is too early to tell whether AJ will need a guardian at the age of 18+, we still need to have a plan in place, heaven forbid, anything happens to Jer and I.
Drafting a will with young children is hard enough. Drafting a will when you have a young child with special needs is even harder. Who do you choose? It is NOT as simple as just adding your brother's kids to your own brood. And if the people you chose say "no", who else is on your "We'd like you to consider taking AJ should something happen to us." How's that for a conversation over dinner? Its something that has been weighing on my mind heavily, for a long time. If the need arises, I want this to be as simple as possible. I've read on special needs trusts, and all that jazz. Frankly, its a bit much if you ask me. If you have someone competent, and knows exactly what your wishes are, that sounds more simple and realistic to me. Anyhow, its weighing on me.
The responsibility of being AJ's mother is weighing on me. A lot. I am tired, exhausted, crabby, ok bitchy if we are being honest. My patience is slim to none and the slightest thing makes me annoyed and stressed out. I don't want to drive across town for summer school, I don't want to drive to therapy. I don't want to play the guessing game of trying to figure out how AJ is feeling or what he wants. I just don't wanna. Its been just short of three years of craziness, and I'm ready for a break. We're ready for a break.
Jeremy and I have decided to take a REAL vacation for our 10th Wedding Anniversary next year. We've loosely planned trips before. Many trips. None that ever came to fruition due to something with AJ. A surgery, an unexpected cost for something AJ needed. Always some reason it didn't happen. It is also terribly difficult for Jeremy to take off of work. I'm thinking with months notice in advance, it may, dare I say it, be easy for him to actually use his time off for a vacation?
Where? Somewhere farther than 1 hour away. Somewhere by plane. That's sunny. And tropical, with fruity tropical drinks. Relaxation and Rejuvination Central. Where we can sleep all day, or spend all day at the pool. No hiking, skydiving, or shopping for us. We want to do NOTHING. Somewhere where the food made by someone else and the sunsets are so incredible you don't want them to end. Somewhere where my husband can swirl & twirl me as we dance in the sand on the beach. Yeah. That's my kind of swirling & twirling.
I had intended to write down all the fun activities we planned on doing this summer all in one place. I saw the idea a while ago an a few crafty blogs I
There it sits. Blank.
Because driving to and from therapies, doctor's appointments, and summer school is not fun. At least not in my book.
My brain is literally swirling and twirling so much I can't seem to focus, relax, or any of the things I am commonly told to just do and I'll feel alllll better.
What exactly is swirling and twirling?
I'm frustrated that we can't put a pool in our gigundo yard. Apparently out lot is too wide and shallow and our lot lines don't leave much give for putting up a above ground molded plastic liner pool. The whole point was to avoid dragging AJ to another appointment for aquatic therapy at a neighboring city's pool. Over the last few weeks, I've seen a few pools that are clearly not abiding by the regs and you know what? I ordered a smaller pool and we'll see if we can stick that sucker in the backyard. Although, I'm not sure with our mosquitos. If not, we've asked some family friends if we can bring him to swim in their pools every now and then.
At our appointment last week, AJ's CP doctor told me he should be doing lots of swimming (more on this below), and my heart just sunk.
I'm frustrated we have this gigundo yard and can't use it. One word: mosquitos. Ugh. It makes me miss living in "the city". We really aren't that far out, but far enough that our neighbors wear mosquito netting while cutting the grass. The mosquitos favor AJ's sweetness especially (he's so cute how could you not?), but seriously?! We keep our lawn cut, as do our neighbors, and we have one of those bug zapper things that is full of dead mosquitos each and every morning. It's still not enough. If anyone has ever wondered why we don't have a patio set, or sit outside EVER, this is why. A pretty hefty breeze needs to be blowing for us to be out and about.
fgggdff **That was our yellow lab nudging me. I forgot to feed them this morning. Hang on.
I feel bad that forgetting to feed the dogs has happened a lot recently. I feel bad that the most common words I use with them are no, lay down, out, get, and go potty. They don't get to play outside as much, due to AJ's schedule and, you guessed it, those darn mosquitos. I never understood why some people would "get rid" of their dog after having a child. While I would never do that, I now understand it-to a point. Trying to meet AJ's needs and all of our animals needs has become increasingly challenging. It does not mean I don't love them or want them, because Lord knows we love our animals, but its a challenge having 4 animals and AJ.
I'm hoping and praying it doesn't storm tonight. Ever since the big storm a few weeks ago...I am terrified of storms. I read someone's facebook post last night about the storm coming in and from that moment on could not calm down. That big storm shook me to my core. Jeremy did everything in his power to calm me down, but I was still distracted, looking out the window every 5 seconds until it got dark. I really, really, really need some good sleep.
I just remembered I need to pick up that receipt from the optical store today. Ugh. For our flex spending this year, they gave us something called a Benny card. Its really quite neat. It has the amount you determined for your yearly flex spending, and you use it like a debit card. Well, our card was suspended until we can provide an itemized receipt for AJ's lens in his glasses. Really? What else would I buy at an optical store people? To say the optical store has been helpful, would be lying.
In the 2.75 mile stretch from AJ's therapy clinic to home today, I pulled over 5 times to put his glasses and ears back on. I've had it. I'll keep doing it until he gets the clue we keep these things on in the car. While it would be great to have someone sit in the back and monitor him, I can't have someone doing that everyday, so that plan doesn't work.
AJ's been extremely sassy this week. We've stopped rolling him on his back on the yoga ball because its reminded him of how it feels to hyperextend. He's hyperextending all over the place and laughing/giggling to get out of work. Sometimes he extends so hard his implants fall off-and he knows it-so he laughs. I'm a very frustrated mom right now. Its sooooo not funny. His listening skills are out the window. He's pushing buttons, and reaching for things despite the word "no" being used intensly.
Go ahead, laugh. While you think its funny, I do not.
I'm thrilled AJ's doing so well with his Auditory Skills Development. Today was our 4th visit and of course, I tell her he's doing this wonderful skill, and he chooses not to do it. Which is common, I know. But this is AJ's pattern, and it has become increasingly frustrating when I say he can do something and no one believes me. Oh, Auditory Skills Development. ASD I call it. What is it? Its basically AV, but we can't call it AV since we aren't following all 10 of the principles. He is doing AMAZINGLY well. I'll blog about this more later.
Today was ASD, and like an idiot, I scheduled feeding therapy right after. We left ASD late, and as I'm running across the parking lot putting AJ in the car, I'm calling the therapy clinic to tell them we'll be late, like 20 minutes late, and I know it will be a short session, thats ok, I'm ON MY WAY! We arrive, and I learn that they had our appointment 15 minutes later than what was on my calendar, so we were ok anyhow. We're there so much, they said I should work there. Not only that, but I don't check in, they know me by name, and we just walk back to the bathroom when we need to. Its very casual. I took AJ into the bathroom so he could go before he ate lunch with his feeding therapist, and of course, he starts whining. He wants to skip the potty and go eat. Understandable but at this point, the whining was annoying and I hit my limit.
The tears welled up as I pushed my hands on the peach tile wall, closed my eyes, and recited the serenity prayer. Moments like that and days like today are often too much to handle. And it just doesn't stop. After a rockin' feeding session, which included some new "Torchin' Tamale" pringles, we came home and once the whining resumed, I put him down for a nap.
I think I'm still reeling from AJ's appointment with his latest addition, an orthopedic surgeon earlier this week. I wasn't nervous going in, since I know the man. We all met in Guatemala. You see, Jer and I adopted AJ at the same time his daughter and husband were adopting their son. The boys were one bassinett away from each other until they came home. This surgeon was there in his "Grandpa" role. His daughter and I are good friends. We have a unique friendship, in that we adopted "together". Same country, same place, same country, same timing. She's always had this zen about her, I wish I could possess for even just an hour.
AJ will be getting botox in his calf next week. This decision was not made lightly, and was made by myself, AJ's CP doctor, and the orthopedic surgeon. The botox isn't as big of a deal as I thought it was, which is where the whole "knowledge is power" thing comes into play. Well do this, and see what happens. AJ's not only got a foot thing going on, he's got a bone thing too. Yep, you guessed it. I'll blog more about this later.
Sseing the ortho took me back to Guatemala. Where I was silently comparing our kids in the courtyard while simultaneously enjoying the fountain. God, I will never forget the sound of that fountain...mixed with the robust sound of the city buses. It made me wonder if he "knew" when he saw AJ that something was wrong. It also flooded my mind with memories of what we thought would be, and that...has been hard. In early August, AJ will have been home for 3 years. When and how that happened, I don't know. But this time of year is always celebratory, and yet still holds a sadness for Jeremy and I. A sadness that no one else can understand but he and I. A panic, a trauma, a love so deep for this child that only grew deeper as we began our journey into parenthood
We don't often see the CP world. What do I mean? Well, we are immersed more into the world of hearing loss than we are with CP. So when I see another CP Mom, I watch her like a hawk and ask a billion questions. In my head of course. Her son was in his chair (which wasn't a wheelchair but not a stroller either) and the big/little (I'm not sure) was there with her. Again, with the tears. At Mom's gentle request, the brother started wheeling the other brother around so Mom could finish the paperwork. We want so badly for AJ to have a sibling. How wonderful it would be for him, and for that sibling. I stifled my tears as I noticed AJ was playing with the toys that were set up in the waiting room. Another momentus occassion. He was enjoying himself. I find myself never understanding why expanding our family has been and continues to be such a battle. I've posted on this before, so I won't drone on about it. But it does bring me a great deal of heartache, and seeing that Mom with another special needs child, + 1 was bittersweet.
We're torn between a rock and a hard place with school/therapy related things for AJ. While I won't go into specifics, my mind is constantly swirling, thinking, and re-thinking. I'm constantly thinking of things for him to do, to reach his goals, and surpass them, but our days are full of therapies, and sometimes, I'm just too damn tired. I can't do it all. And yes, I KNOW I CAN'T DO IT ALL. But when you are constantly being told what he isn't doing, you feel a sense of responsibility to get him to that place, especially when you BELIEVE HE CAN. That line, "He's where he is today because of you two, his parents," carries a lot of weight. if we weren't advocating for him, I can imagine the comments that would come flying out of people's mouths. AJ needs to be pushed. Jeremy and I know, all too well, what happens when we don't push AJ. Even things as simple as us forgetting to brush him in the morning, or not reading books at night. All of those "simple" things mean so much more in AJ's world.
AJ's world. It terrifies me to think of what would happen to AJ if we weren't here. If something should happen to both of us, what would happen to AJ? This question was one of the reasons we went to the Guardianship seminar a few months ago. While it is too early to tell whether AJ will need a guardian at the age of 18+, we still need to have a plan in place, heaven forbid, anything happens to Jer and I.
Drafting a will with young children is hard enough. Drafting a will when you have a young child with special needs is even harder. Who do you choose? It is NOT as simple as just adding your brother's kids to your own brood. And if the people you chose say "no", who else is on your "We'd like you to consider taking AJ should something happen to us." How's that for a conversation over dinner? Its something that has been weighing on my mind heavily, for a long time. If the need arises, I want this to be as simple as possible. I've read on special needs trusts, and all that jazz. Frankly, its a bit much if you ask me. If you have someone competent, and knows exactly what your wishes are, that sounds more simple and realistic to me. Anyhow, its weighing on me.
The responsibility of being AJ's mother is weighing on me. A lot. I am tired, exhausted, crabby, ok bitchy if we are being honest. My patience is slim to none and the slightest thing makes me annoyed and stressed out. I don't want to drive across town for summer school, I don't want to drive to therapy. I don't want to play the guessing game of trying to figure out how AJ is feeling or what he wants. I just don't wanna. Its been just short of three years of craziness, and I'm ready for a break. We're ready for a break.
Jeremy and I have decided to take a REAL vacation for our 10th Wedding Anniversary next year. We've loosely planned trips before. Many trips. None that ever came to fruition due to something with AJ. A surgery, an unexpected cost for something AJ needed. Always some reason it didn't happen. It is also terribly difficult for Jeremy to take off of work. I'm thinking with months notice in advance, it may, dare I say it, be easy for him to actually use his time off for a vacation?
Where? Somewhere farther than 1 hour away. Somewhere by plane. That's sunny. And tropical, with fruity tropical drinks. Relaxation and Rejuvination Central. Where we can sleep all day, or spend all day at the pool. No hiking, skydiving, or shopping for us. We want to do NOTHING. Somewhere where the food made by someone else and the sunsets are so incredible you don't want them to end. Somewhere where my husband can swirl & twirl me as we dance in the sand on the beach. Yeah. That's my kind of swirling & twirling.
Tuesday, July 13, 2010
AJ's 2nd Cochlear Implant Activation
...was over a month ago. Wow.
This activation was MUCH different than his first one. He had suddenly turned into such a big boy sitting in that chair. Pictures will have to suffice, as we DID record it, but I can't get the video to upload to Blogger.
Hearing the BEEPS with his new implant:
When his audi called his name, shortly after she added his right implant back into the mix, he TURNED IMMEDIATELY. At that moment, I KNEW we had made the right decision to go bilateral. While I knew it was the right decision before, call this moment cement.
This activation was MUCH different than his first one. He had suddenly turned into such a big boy sitting in that chair. Pictures will have to suffice, as we DID record it, but I can't get the video to upload to Blogger.
We had him wear his
Hearing SPEECH with his new implant:
Hearing his audi say his name for the first time
with BILATERAL IMPLANTS
{This was truly amazing!}
BILATERAL
Left Ear June 2010 Right Ear April 2009
I'm ready world...
AJ has done extremely well with his new implant. He's been wearing it with no problem from the very beginning. We are now on our 13th program (something like that) and he's just now pulling the left off every now and then. Things sound totally different to him with both implants. The louder we turn him up, the bigger difference I see.
When his audi called his name, shortly after she added his right implant back into the mix, he TURNED IMMEDIATELY. At that moment, I KNEW we had made the right decision to go bilateral. While I knew it was the right decision before, call this moment cement.
He heard an airplane the day after his activation. He had never paid attention to airplanes in the sky before. He tunes into the oven timer beeping, and other smaller sounds he never paid attention to before. He is so much more in tune with his world The general rule of thumb is that a child has all they need to develop speech and language with one single cochlear implant. I agree...to a certain degree. Some kiddos do remarkably well with just one. AJ needed two. 'Nuf said.
AJ's activation was a special day, as it was our 9th wedding anniversary. However, true to our past, everything was thrown into one day, so I don't really think we were able to enjoy this moment as much as we truly wanted to. Shortly after AJ's activation, Jeremy and I had an appointment with his neurologist, which made the day very heavy on our hearts.
AJ has been astounding the critics since his 2nd activation. And I know he'll continue to do so....
Sunday, July 11, 2010
AJ Gets His Polka On
AJ attended his first festival: Polish Fest. If you are familiar with the Milwaukee Area, the Henry Maier Festival Grounds host the biggest music festival in the world, Summerfest, as well as many other ethnic festivals throughout the summer. We had a blast, and AJ did extremely with the crowd noise and music with both his CIs on. You could definitely tell the difference when the "new" one would fall off and when you'd put it back on.
*Relax, he didn't get anywhere near the beer.
He was just checkin' it out.
Snowcone!
Polka with Daddy!
Polish Connection:
The band AJ LOVED!
Serious conversation?
We ended the day at the splash pad!
Even though the water was ice cold, it was still fun.
Tuesday, July 6, 2010
Binder Mayhem
The activity board was the first project for my "Keeping It All Straight" series. Next? Binders.
I pulled them all down and layed them out...
I pulled them all down and layed them out...
Quickly realizing that this system
is no longer working:
Currently, I have AJ's records sorted by Doctor/Clinic with divider tabs. The binder above is Medical 2007-2009...and is overflowing. I need to come up with a better plan of action for his records.
Clearly, one binder is not going to be sufficient. I did start a 2010-____ binder, but I think I might split the specialists into two different binders, alphabetically.
The other binders represent organizations we have/currently receive services from such as respite, Birth to 3, and United Cerebral Palsy, as well as his plethora of school information.
I am a firm believer in keeping all of AJ's paperwork organized. There are many times I've needed to reference something while on the phone with the insurance company, scheduling another appointment, or working with providing information on AJ where I've pulled a binder and flipped to the appropriate section. They have really come in handy. I also keep all of my previous calendars (since AJ arrived home) on the shelf in the office. I've had to reference those quite a few times.
Stay tuned for Keeping It All Straight Part 2: Binders...
Saturday, July 3, 2010
The Activity Board
Remember the activity board I made for AJ back in March?
Well.... I finished it!
I couldn't resist teasing you!
Want to see MORE?!!
Want to see MORE?!!
CLICK HERE.
Thursday, July 1, 2010
Undoing the Undone
AJ has not had physical therapy since March. His state insurance decided, for some reason, he was doing fine without it and flat out denied more visits. When he had his cochlear implant surgery in May, AJ's PT resubmitted for more visits-thinking it would be a breeze to get post-surgery visits. Not to mention, AJ was not going to be receiving PT from school over the summer, so we thought it was a slam dunk requesting more visits. Your thinking what does a cochlear implant surgery have to do with PT? A LOT. Allow me to side-track for a moment.
About two weeks after AJ's first CI surgery, he got really sick. We spent a few hours in the ER waiting area, mind you with my child's head and exposed surgery site around all these sick kids, and finally got into a room, where they gave him fluids and sent us home. Dx: virus. He went limp, lethargic, and all around scared the hell out of us.
You can imagine our delight when it seemed like this was NOT going to happen this time post-surgery. Well, it did. It was the day after his IEP meeting. A Saturday nonetheless. We all know how difficult it is to get a hold of medical staff on the weekends.
Long story short: vertigo. Not a virus. Apparently it is common with CI surgeries, with kids it happens later (not immediately post-surg) because kids heal slower than adults. We did not go to the ER. We spent a lot of time on the phone. He was back to himself within 2 days. But let me tell you, the limp, lethargic, scariness was all there. He stops walking, this time stopped moving all together.
Who do you think my 2nd call was to? AJ's PT. To make sure she was on board in case this totally knocked him for a loop.
We were recently approved for 6 (not 8) visits from now until December. Which is crap. In a previous post, I had mentioned something was better than nothing, so we initially chose to take what we could get. AJ was enrolled in a summer tumbling group that his PT was teaching, so we were glad he'd see her during that time, in addition to our once a month visits, or whatever.
For the first time since March, AJ's PT treated him last Friday. And it was NOT good. How do I explain this? He's in really bad shape. His left side is SO tight its causing him pain and discomfort. Between his tone and new exposure to sound through his new CI, ufta. He has not been a happy boy. His PT worked on him while we discussed a plan of action.
I was literally crying inside while she was talking. Tears of joy that she finally had her magic hands on him again. Tears of anger at his cerebral palsy for it making my little man feel pain and discomfort. Tears of anger at the stupid state insurance who thinks he doesn't need therapy. At 3 years 11 months and 25 days old. Seriously? Tears of sadness and anger toward myself for letting this happen. For not advocating and pushing harder for him to have more therapy. AJ slept 4 hours after that PT appointment. HE NEEDED THE PT, and NEEDED THE REST. He woke up and was happy, and relaxed and ready to go.
She said the word I think I have found a hate for, and I don't hate much, people.
REGRESSION.
AJ has regressed.
He's extremely tight and his left foot is turning in so much we can't seem to get it straight. His PT also thinks its time for Botox. Sigh.
Our plan of action:
We will use the 6 visits from the state insurance, but are appealing in an effort to receive more visits. We are also filing a grievance with primary insurance (through Jer's work). When AJ "graduated" from the Birth to 3 program, his PT and OT both submitted to both insurances to allow AJ to be seen at the clinic vs. home. (Home visits stop after age 3) Our primary denied right away, stating it was not medically necessary. But the state approved, so we moved forward. Hopefully, our primary will take a look at AJ's case with a bit more detail and reconsider.
Once we use our 6 visits, we will begin private paying for phyical therapy. Sigh. AJ's PT would like to see him at least twice a month. We're going to make it happen because AJ NEEDS IT. Actually he's beyond needing it at this point.
The tumbling class we were so excited about? Was cancelled. The class cannot be run with only two kids enrolled. Would it be inappropriate for me to go knocking on the door of the parent who pulled them out of the class and ask them to come back? Please? My kid needs it!
We are also doing a massage regimen with him. I do it AT LEAST twice a day. We are very lucky that AJ does not mind the deep pressure massage. We have a list of things to do with him in effort to help with length and separating his ribcage from his shoulder. He just wants it all tucked up in there so nicely. Not good. We're also going back to ball work, which is helping a great deal as well. Except, we've learned he's been rolling back and forth on the ball on his back at school. Now I'm finding him arching, yep, I said arching backwards over his pillow. NOT GOOD. He does NOT need to start hyperextending backward again. NO.
Undoing the undone. I hope we are successful. We have had 16 appts so far this summer. Next week AJ will see his CP doctor, and the decision on Botox vs. no Botox will be made. I don't know why, but Botox scares the hell out of me. In the meantime, we're just trying to keep AJ loose and pain-free.
About two weeks after AJ's first CI surgery, he got really sick. We spent a few hours in the ER waiting area, mind you with my child's head and exposed surgery site around all these sick kids, and finally got into a room, where they gave him fluids and sent us home. Dx: virus. He went limp, lethargic, and all around scared the hell out of us.
You can imagine our delight when it seemed like this was NOT going to happen this time post-surgery. Well, it did. It was the day after his IEP meeting. A Saturday nonetheless. We all know how difficult it is to get a hold of medical staff on the weekends.
Long story short: vertigo. Not a virus. Apparently it is common with CI surgeries, with kids it happens later (not immediately post-surg) because kids heal slower than adults. We did not go to the ER. We spent a lot of time on the phone. He was back to himself within 2 days. But let me tell you, the limp, lethargic, scariness was all there. He stops walking, this time stopped moving all together.
Who do you think my 2nd call was to? AJ's PT. To make sure she was on board in case this totally knocked him for a loop.
We were recently approved for 6 (not 8) visits from now until December. Which is crap. In a previous post, I had mentioned something was better than nothing, so we initially chose to take what we could get. AJ was enrolled in a summer tumbling group that his PT was teaching, so we were glad he'd see her during that time, in addition to our once a month visits, or whatever.
For the first time since March, AJ's PT treated him last Friday. And it was NOT good. How do I explain this? He's in really bad shape. His left side is SO tight its causing him pain and discomfort. Between his tone and new exposure to sound through his new CI, ufta. He has not been a happy boy. His PT worked on him while we discussed a plan of action.
I was literally crying inside while she was talking. Tears of joy that she finally had her magic hands on him again. Tears of anger at his cerebral palsy for it making my little man feel pain and discomfort. Tears of anger at the stupid state insurance who thinks he doesn't need therapy. At 3 years 11 months and 25 days old. Seriously? Tears of sadness and anger toward myself for letting this happen. For not advocating and pushing harder for him to have more therapy. AJ slept 4 hours after that PT appointment. HE NEEDED THE PT, and NEEDED THE REST. He woke up and was happy, and relaxed and ready to go.
She said the word I think I have found a hate for, and I don't hate much, people.
REGRESSION.
AJ has regressed.
He's extremely tight and his left foot is turning in so much we can't seem to get it straight. His PT also thinks its time for Botox. Sigh.
Our plan of action:
We will use the 6 visits from the state insurance, but are appealing in an effort to receive more visits. We are also filing a grievance with primary insurance (through Jer's work). When AJ "graduated" from the Birth to 3 program, his PT and OT both submitted to both insurances to allow AJ to be seen at the clinic vs. home. (Home visits stop after age 3) Our primary denied right away, stating it was not medically necessary. But the state approved, so we moved forward. Hopefully, our primary will take a look at AJ's case with a bit more detail and reconsider.
Once we use our 6 visits, we will begin private paying for phyical therapy. Sigh. AJ's PT would like to see him at least twice a month. We're going to make it happen because AJ NEEDS IT. Actually he's beyond needing it at this point.
The tumbling class we were so excited about? Was cancelled. The class cannot be run with only two kids enrolled. Would it be inappropriate for me to go knocking on the door of the parent who pulled them out of the class and ask them to come back? Please? My kid needs it!
We are also doing a massage regimen with him. I do it AT LEAST twice a day. We are very lucky that AJ does not mind the deep pressure massage. We have a list of things to do with him in effort to help with length and separating his ribcage from his shoulder. He just wants it all tucked up in there so nicely. Not good. We're also going back to ball work, which is helping a great deal as well. Except, we've learned he's been rolling back and forth on the ball on his back at school. Now I'm finding him arching, yep, I said arching backwards over his pillow. NOT GOOD. He does NOT need to start hyperextending backward again. NO.
Undoing the undone. I hope we are successful. We have had 16 appts so far this summer. Next week AJ will see his CP doctor, and the decision on Botox vs. no Botox will be made. I don't know why, but Botox scares the hell out of me. In the meantime, we're just trying to keep AJ loose and pain-free.
Wednesday, June 23, 2010
A Whole Year
I seriously cannot believe AJ is finished with his 1st year of preschool. When did that happen? Wasn't it just yesterday we were struggling to find a backpack that he could carry? (Didn't Happen). Wasn't it just last week we went school supply shopping? Wasn't it just yesterday Jeremy and I dropped him off and I was stifling pyscho-mommy tears down the hallway, breaking into a fast-power walk so that no one would see I was about to lose it.
I am always thankful for pictures and videos. I know, I know, I drive some of you crazy with my picture taking. I want to remember these things, peeps. Right, Uncle Dustin? (Uncle Dustin is my picture-taking partner in crime)
It surprised me to no end to see a photo of AJ and I on his first day of school. How much he has grown, physcially, emotionally, socially, and as a little learner.
He's a much better walker, both independently and with a hand. He's taller, which helps A LOT. He learned how to stand in line (with Mommy) when the bell rang vs. taking off toward the lower level or down the hall to his classroom. Overall he did very well with potty training at school and was able to step up and down on the stepstool himself to wash his hands. He learned to get in and out of his chair on his own. He gained upper body strength and built up his trunk by working with the school PT. He learned how to fingerpaint, and paint with a brush without putting it in his mouth.
At the beginning of the year there were many tears when transitioning from activity to activity. He would often have to be rocked to be soothed. He would self-stim by rocking himself on the floor and/or arch his back in that "I'm a CP kiddo, I know how to use my tone," attitude. When we walk down the stairs to school, he can't get in the door fast enough. He's happy to be there. He laughs and giggles and enjoys his day.
Socially, he's grown a lot. While it may not show on paper, our eyes see it. He smiles at his peers. He engages with them. He participated in 1:1 activities with a peer very well. He even asked one of his friends for the glue a few weeks ago by signing "please". He recongizes and knows ALL of the staff that work with him, which is awesome to see first-person. His peers took cues from AJ's teacher on how to best get AJ's attention and all treated him like one of their own. I had been worried they would treat him differently. Anything but. That makes me proud, and they aren't even my kids.
As a little learner, AJ has made huge progress. Everything has been trial and error with AJ. He was a clean slate. No column A or B. A bare chalkboard just waiting for knowledge. During the month of May, AJ's language via signs exploded. He resumed using the sign for "more", and added "please" and "eat" to his vocabulary at school. Since he's been out of school he's officially added "on" and "all done". He's even putting them together, like "more please". Although sometimes its tricky, as he goes through his little roladex of signs to get what he wants. There is less of the roladex idea going on currently, which is awesome. I don't have time to list all of the gains he's made as a learner, but take my word for it, he's coming a looooooong way since September.
He had made so much progress as a learner. But honestly, I didn't see it. At first. This special needs whoo-ha is tricky.
In this corner "Focus on what your child can do, explore their possibilities, cherish every gain".
In this corner "Here is this evaluation, this checklist, this test, this review that says your child isn't doing this, this, this x 1000. You need to do this, this, this x 200. Despite that, we don't know whether he'll do this, this or this"
DING DING.
I'm down for the count.
It really does take a lot forus ok more so me to step back from today's reality and look at how far AJ has come. I wish each one of you could have been there when we stepped off the plane at Mitchell. While it often brings sadness, I force myself to look back at those pictures and videos to see JUST.HOW.FAR.HE'S.COME. Because it is so difficult to be positive and la-tee-dah when that second corner fighter is constantly in your head. He's not the same child who came home. AT ALL. I had almost forgotten that AJ crawled just 4 1/2 months after we brought him home. Jello to Mobile. That's pretty incredible.
I am impatient. Of course we want AJ to be doing more, learning more, communicating more. All of the above box? Check. There are hopes and dreams for AJ that we have adjusted, bust certainly not given up on. While I won't apologize for being impatient, I do realize that we won't get wherever we are going in a hurry. Steady wins the race. Unless your driving a canary yellow Porsche 911 Turbo.
A few days before school ended, the class took a trip (with parents) to the zoo. In the moment, I was frustrated because AJ was not paying attention to the animals, his implant just would not stay on, and neither were his glasses. Sometimes AJ's delays are ever present and it just.bugs.me. But looking back, it made me sigh with tears in my eyeball when all the kids saw us arrive and ran to greet AJ. They were so excited to see him. It made me smile when his teacher showed him the camels. He enjoyed lunch, strolling around in the stroller, and he really loved the carousel.
The last day of school was also AJ's first day with two ears! All of the parents were invited to watch a slideshow of the entire year followed by a picnic to a nearby park. We spent some time at the park, where AJ heard a plane for the first time and really tuned into some of the parents who bent down to talk to him. We were lucky enough to be part of one big happy preschool family. Its been an amazing year!
I am always thankful for pictures and videos. I know, I know, I drive some of you crazy with my picture taking. I want to remember these things, peeps. Right, Uncle Dustin? (Uncle Dustin is my picture-taking partner in crime)
It surprised me to no end to see a photo of AJ and I on his first day of school. How much he has grown, physcially, emotionally, socially, and as a little learner.
He's a much better walker, both independently and with a hand. He's taller, which helps A LOT. He learned how to stand in line (with Mommy) when the bell rang vs. taking off toward the lower level or down the hall to his classroom. Overall he did very well with potty training at school and was able to step up and down on the stepstool himself to wash his hands. He learned to get in and out of his chair on his own. He gained upper body strength and built up his trunk by working with the school PT. He learned how to fingerpaint, and paint with a brush without putting it in his mouth.
At the beginning of the year there were many tears when transitioning from activity to activity. He would often have to be rocked to be soothed. He would self-stim by rocking himself on the floor and/or arch his back in that "I'm a CP kiddo, I know how to use my tone," attitude. When we walk down the stairs to school, he can't get in the door fast enough. He's happy to be there. He laughs and giggles and enjoys his day.
Socially, he's grown a lot. While it may not show on paper, our eyes see it. He smiles at his peers. He engages with them. He participated in 1:1 activities with a peer very well. He even asked one of his friends for the glue a few weeks ago by signing "please". He recongizes and knows ALL of the staff that work with him, which is awesome to see first-person. His peers took cues from AJ's teacher on how to best get AJ's attention and all treated him like one of their own. I had been worried they would treat him differently. Anything but. That makes me proud, and they aren't even my kids.
As a little learner, AJ has made huge progress. Everything has been trial and error with AJ. He was a clean slate. No column A or B. A bare chalkboard just waiting for knowledge. During the month of May, AJ's language via signs exploded. He resumed using the sign for "more", and added "please" and "eat" to his vocabulary at school. Since he's been out of school he's officially added "on" and "all done". He's even putting them together, like "more please". Although sometimes its tricky, as he goes through his little roladex of signs to get what he wants. There is less of the roladex idea going on currently, which is awesome. I don't have time to list all of the gains he's made as a learner, but take my word for it, he's coming a looooooong way since September.
He had made so much progress as a learner. But honestly, I didn't see it. At first. This special needs whoo-ha is tricky.
In this corner "Focus on what your child can do, explore their possibilities, cherish every gain".
In this corner "Here is this evaluation, this checklist, this test, this review that says your child isn't doing this, this, this x 1000. You need to do this, this, this x 200. Despite that, we don't know whether he'll do this, this or this"
DING DING.
I'm down for the count.
It really does take a lot for
I am impatient. Of course we want AJ to be doing more, learning more, communicating more. All of the above box? Check. There are hopes and dreams for AJ that we have adjusted, bust certainly not given up on. While I won't apologize for being impatient, I do realize that we won't get wherever we are going in a hurry. Steady wins the race. Unless your driving a canary yellow Porsche 911 Turbo.
A few days before school ended, the class took a trip (with parents) to the zoo. In the moment, I was frustrated because AJ was not paying attention to the animals, his implant just would not stay on, and neither were his glasses. Sometimes AJ's delays are ever present and it just.bugs.me. But looking back, it made me sigh with tears in my eyeball when all the kids saw us arrive and ran to greet AJ. They were so excited to see him. It made me smile when his teacher showed him the camels. He enjoyed lunch, strolling around in the stroller, and he really loved the carousel.
AJ's teacher saying/signing "camel" with AJ
AJ & Mommy on the carousel
The last day of school was also AJ's first day with two ears! All of the parents were invited to watch a slideshow of the entire year followed by a picnic to a nearby park. We spent some time at the park, where AJ heard a plane for the first time and really tuned into some of the parents who bent down to talk to him. We were lucky enough to be part of one big happy preschool family. Its been an amazing year!
Last Day of School (w/Two Ears)
AJ won the "Gold Star Work Ethic" award which read:
AJ worked daily and did whatever our staff
and peers asked him to do.
AJ worked daily and did whatever our staff
and peers asked him to do.
He works with many staff members.
Way to go AJ!
Way to go AJ!
I'm looking forward to seeing what kind of
progress AJ makes next year, aren't you?
Friday, June 18, 2010
Get Funky
So apparently my post which included the line "Jeremy's brain gets all funky and we try to figure it out," was quite funny. I don't disagree. Even Jer laughed when he read it.
I'll try my best to give a brief synopsis.
Three weeks ago, Jeremy started feeling dizzy. His primary doctor thought it was labrinythitis. We were told to go enjoy our long-anticipated, we-hadn't-been-away-anywhere-in-over-a-year mini vacation to our B&B just outside of Madison over Memorial Day weekend. If it didn't subside, he'd see a neurologist the following Tuesday.
We should have stayed home.
After coming home on Monday, Jeremy and I spent a couple of hours in the ER, arriving home at about 2AM. His dizziness had not subsided, but had gotten worse, so we thought better safe then sorry. His symptoms also included tingling on his right side and on the left side of his mouth. They did a CT scan and sent him home with the diagnosis of dizziness and told him to follow up with the neurologist the next day. Helpful. We were entertained though...as there was a cocaine addict handcuffed to his bed in the "slot" next to us (those curtains give soooo much privacy, not) who was singing away and trying to schmooze the female staff. We became friends with the cop who was spending his shift with the cocaine dude. Fun times.
The following day he saw the neurologist who sent him for an MRI of his brain and spine.
The MRI showed a lesion on Jeremy's brain. Get ready, set, go, for a mammoth race to see how many needles we can stick Jeremy with and how many procedures/tests/labs we can run. At this point, this whole episode is being called a 'clinically isolated syndrome'. Meaning, freak thing, that just happened. We have the option to treat with MS drugs, or not treat. There is no definite test for MS. It could be a freak one time thing, or it could be the first flair up of MS. Are we having fun yet?
Regardless if it is a one time thing, the treatments could be preventative.
Mixed in all this fun was AJ's 4th Birthday Party and AJ's 2nd CI activation, which was also on our 9th wedding anniversary, AJ's school field trip and last day of school. Whew! I took AJ to school the day of activation, dropped off some wickedly cute cupcakes (since of course he had snack that week), came home with lunch, shoveled food into everyone's mouths, and sped off to Children's Hospital to have AJ's left implant activated.
After the activation (which will have its own post soon, I promise) we drove to Jeremy's neurologist's office to hear the news about the "there's bad inflammation, our suggestion is to treat, here's 20lbs of literature to read, you will get better". Jeremy didn't hear the "you will get better" part, so its a good thing I was there to give him the pep-talk/translation on the way home. His symptoms were fluctating, so that meant his brain was healing. Thats a good thing. We left the office completely drained, and drove home in rush hour, in the rain.
We cried, we laughed, we talked, all as we crawled on 43 South. Happy Anniversary. We grabbed subs on the way home (due to the steroids, that was the only thing that tasted good to Jer) and called it a night.
After 2+ weeks home, Jer returned to work this week. Which has been good for everyone. His symptoms have decreased dramatically and he's in much better spirits. Brain funkiness sure does mess with the mind.
I want to thank my Mom for watching AJ over our mini-vacation-gone-wrong...and then coming back hours later so I could take Jer to the ER. Thanks to Jer's Mom for coming into town and watching AJ during the constant procedures and tests. You both ROCK.
Another thank you to Jeremy's incredible co-workers. While I knew this already, this situation brought on amazing kindness, understanding, and support from his entire crew. I met co-workers who's names are mentioned often, caught up with some I hadn't seen in a while, and they all were able to see AJ. Under the circumstances, it was wonderful to know my husband was so supported by those at his workplace. His neurologists are literally down the hall from his office, so not only are they now his physicians, they are colleagues. Truly awesome.
And how can we laugh about it? Because otherwise we'll cry. And believe you me, we've done enough of that. Have we asked WHY? Oh yeah. Its not fair, we didn't need this, as my father-in-law used to say it sucks canal water. But...we can't change it, we can only move forward. One thing we learned with AJ-take things one step at a time. This mindsight was critical to Jer's brain funkiness. Jeremy and I keep each other in balance. He's very laid back. I'm more structured and gung-ho, if you will. To see my hubby not laid back, made me out of balance. We're just about back to 50/50...I think. Jeremy is feeling better, and for that, we are VERY THANKFUL.
I'll try my best to give a brief synopsis.
Three weeks ago, Jeremy started feeling dizzy. His primary doctor thought it was labrinythitis. We were told to go enjoy our long-anticipated, we-hadn't-been-away-anywhere-in-over-a-year mini vacation to our B&B just outside of Madison over Memorial Day weekend. If it didn't subside, he'd see a neurologist the following Tuesday.
We should have stayed home.
After coming home on Monday, Jeremy and I spent a couple of hours in the ER, arriving home at about 2AM. His dizziness had not subsided, but had gotten worse, so we thought better safe then sorry. His symptoms also included tingling on his right side and on the left side of his mouth. They did a CT scan and sent him home with the diagnosis of dizziness and told him to follow up with the neurologist the next day. Helpful. We were entertained though...as there was a cocaine addict handcuffed to his bed in the "slot" next to us (those curtains give soooo much privacy, not) who was singing away and trying to schmooze the female staff. We became friends with the cop who was spending his shift with the cocaine dude. Fun times.
The following day he saw the neurologist who sent him for an MRI of his brain and spine.
The MRI showed a lesion on Jeremy's brain. Get ready, set, go, for a mammoth race to see how many needles we can stick Jeremy with and how many procedures/tests/labs we can run. At this point, this whole episode is being called a 'clinically isolated syndrome'. Meaning, freak thing, that just happened. We have the option to treat with MS drugs, or not treat. There is no definite test for MS. It could be a freak one time thing, or it could be the first flair up of MS. Are we having fun yet?
Regardless if it is a one time thing, the treatments could be preventative.
Mixed in all this fun was AJ's 4th Birthday Party and AJ's 2nd CI activation, which was also on our 9th wedding anniversary, AJ's school field trip and last day of school. Whew! I took AJ to school the day of activation, dropped off some wickedly cute cupcakes (since of course he had snack that week), came home with lunch, shoveled food into everyone's mouths, and sped off to Children's Hospital to have AJ's left implant activated.
After the activation (which will have its own post soon, I promise) we drove to Jeremy's neurologist's office to hear the news about the "there's bad inflammation, our suggestion is to treat, here's 20lbs of literature to read, you will get better". Jeremy didn't hear the "you will get better" part, so its a good thing I was there to give him the pep-talk/translation on the way home. His symptoms were fluctating, so that meant his brain was healing. Thats a good thing. We left the office completely drained, and drove home in rush hour, in the rain.
We cried, we laughed, we talked, all as we crawled on 43 South. Happy Anniversary. We grabbed subs on the way home (due to the steroids, that was the only thing that tasted good to Jer) and called it a night.
After 2+ weeks home, Jer returned to work this week. Which has been good for everyone. His symptoms have decreased dramatically and he's in much better spirits. Brain funkiness sure does mess with the mind.
I want to thank my Mom for watching AJ over our mini-vacation-gone-wrong...and then coming back hours later so I could take Jer to the ER. Thanks to Jer's Mom for coming into town and watching AJ during the constant procedures and tests. You both ROCK.
Another thank you to Jeremy's incredible co-workers. While I knew this already, this situation brought on amazing kindness, understanding, and support from his entire crew. I met co-workers who's names are mentioned often, caught up with some I hadn't seen in a while, and they all were able to see AJ. Under the circumstances, it was wonderful to know my husband was so supported by those at his workplace. His neurologists are literally down the hall from his office, so not only are they now his physicians, they are colleagues. Truly awesome.
And how can we laugh about it? Because otherwise we'll cry. And believe you me, we've done enough of that. Have we asked WHY? Oh yeah. Its not fair, we didn't need this, as my father-in-law used to say it sucks canal water. But...we can't change it, we can only move forward. One thing we learned with AJ-take things one step at a time. This mindsight was critical to Jer's brain funkiness. Jeremy and I keep each other in balance. He's very laid back. I'm more structured and gung-ho, if you will. To see my hubby not laid back, made me out of balance. We're just about back to 50/50...I think. Jeremy is feeling better, and for that, we are VERY THANKFUL.
And honey, don't forget that I love you,
even if you are a bit funky....
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