About a year ago, I fell in love with this old Victorian home near AJ's school. I've always had a "thing" for Victorians, even though I know they are money pits and are truly never a finished project. This house is still on the market and taunted me the first week of school. I drove past it at least twice a day. It is evident that its been empty for a while (sellers relocated) and that whomever is taking care of the lawn/yard is not doing such a hot job. The house isn't in the best area either. I've finally fallen out of love with this house.
Instead, we've turned our efforts towards getting this house ready for sale. This is the longest we've ever been in a place (6 years+) and it shows. Where does all this stuff come from? It may sound corny, but how blessed we are to be able to say that. I've hung curtains and curtain rods that have been in packages in my closet for months. I've made "To Do" Lists for each room (again) and have managed to cross a few things off the list each day.
Late last night we watched as car after car pulled up and things started disappearing from our pile on the curb. This morning, even more things were gone. I'm really glad someone else will actually get use out of the workout bench and elliptical (among other things). Jeremy installed the new outside light and I'm still trying to figure out how to mount the new address plaque. The front door is prepped for paint and the new paint color for the teeny bit of vertical aluminum siding we have has been chosen. The garage is empty except for the excess of trash bags we've compiled with all this de-cluttering going on. The basement looks huge (again) and is shaping up nicely.
I'm struggling the most with all of AJ's stuff. We all know that you live differently when you sell your home. You stage your home, sans the trampoline and sports bean bags that grace your living room floor. As much as I'd love to tell someone "buzz off bucko", our toys are staying out, that won't help to sell our house. In this market, it is really important to do as much as you can to sell your home. So, I think the trampoline will go downstairs and the bean bags will be packed away.
We decided to leave the wall color in AJ's room (light blue/white horizontal strip/sage green). This was a difficult decision for me. We painted the nursery neutral, because we didn't know what we were "getting". I really wanted to say goodbye to the wall colors as much as I enjoyed saying goodbye to his crib (it sat empty for so long, it created some rough memories for me...so it was really healthy for me when we passed it on to someone in need). In an effort to save ourselves some work, I decided to leave the paint color. Instead, I bought a navy blue bedspread and geometric drapes on clearance. AJ's Room: Done.
And those sports bean bags? Are for AJ's new basketball themed room.
I still need to repaint the bathroom (don't EVER use flat paint in your bathroom). I went to touch up a few spots and the paint color I got was different. Gotta repaint. Be careful when you go in the office closet, something might bite you. Probably a folder full of paper. Yikes. I'm currently typing this on my laptop keyboard, while using the old PC monitor, with both sitting on a card table. Oh, and the old PC itself is on the floor. I need to see if I can pull off the rest of the pictures from mid-2007 to 2009 off and store them elsewhere. Sidenote: I took our external hard drive that crashed in. I finally bit the bullet. They were not able to retrieve the data in the store, so the drive has been sent up to Appleton with hopes they can recover it there. To the tune of $300. Sigh. I really, really, really hope they can. Anyhow, the guest room needs to look like a guest room, so I'm unsure of where to put the computer(s).
Things are moving and in general, I'm feeling good about it. It makes me cringe to think of driving another winter to and from Waukesha. I know, there are people who drive greater distances every day. We are trying to decrease the stress in our lives. I am just not one of those people. I don't feel safe. Given our crazy weather this summer, I can only imagine what our winter will be like. We're also looking for a neighborhood with kids and younger families.
We're getting excited looking at houses online. It looks like there are some good options out there for us.
We aren't the type of people that are afraid of colors on the wall or even ugly bathrooms. We remodeled our bathroom in this house two years ago and know the process, learning the do's and dont's. Kitchens? They need good bones. Paint goes a long way. Jeremy does the demo, I do the restoring (unless I'm clueless, then we hire help, we've learned!) Bring on the avocado tile and banana yellow tub and toilet. Bring on the wallpaper and pink countertop. We're ready.
Well, almost. Gotta finish getting this joint ready first.
Sunday, September 12, 2010
Friday, September 10, 2010
Curves with Milk
While we were at a co-treat of PT and OT this week, AJ's PT asked what I've been seeing with AJ. I noted difficulty walking, tripping over his feet, dragging, and trying to walk to fast.
It is a darn good thing we got the botox in his calf.
Why is it good?
AJ's growing. He has been since he got the botox a month ago. He always grows "up" before "out", so I can always tell when I'm rolling the waist of his pants and shorts, as he loses what little hips and tush he has. He usually grows slowly, which aggrivates his GI doctor but pleases both us and his PT, since it causes him less pain. (His muscles do not stretch at the same rate his bones do, thus, PAIN). But this time around, he's growing faster. Faster than his normal pace.
If he hadn't had the botox he would have lost the mobility to walk.
The funny thing? I shrugged it off. Me! I shrugged it off. One because I was patting myself on the back for stopping my freak out over the botox and just went for it. Two, because he had the botox, so we were lucky, and we can work with the challenges his growth spurt is causing. Three, because his PT walks on water with me and I know she would never let that happen permanently. The growing does hinder us to see how well, exactly, the botox has worked, but if its kept him mobile. t
Which brings me to the curve.
AJ's spine is changing. If left untreated, he could have curvature of the spine. His PT said "He WILL NOT have a curve in his spine, I WILL NOT allow it." When she says those things (like HE WILL WALK) I know we'll be given the tools for preventing curvature and go forward. She had to show me the change a few times before I saw it.
This did scared me, more than the walking thing. But, his PT showed me some funky back stretches to do with him, mandated massaging twice a day (which she has never ever done, she never gives me reps or whatever), and mandated Jer wrestling with him and bouncing him around with "enthusiasm". Somehow I don't think the last two instructions will be that difficult to make happen. Anything we can do to keep him loose and stretched out is now on our agenda.
AJ hasn't been drinking his Kid Essentials. He's actually been drinking water. Plain.Straight.Agua. This is nothing short of a miracle. That I had nothing to do with. After finding out that AJ did drink white milk a few times at school last year, I thought it was time to make the change. He's eating enough in his daily diet to feed a horse, or heck, maybe the whole farm. I think the "let's drink something icky and sweet multiple times a day got to him. AND, its horrible for his already weak teeth.
So, I checked with our GI dietician and gave her my plan of attack: whole milk with 2 TSBP Duocal mixed in, with a daily vitamin. Much to my surprise, we got the all clear. In case you wanted to know, whole milk is 150 cal per 8oz, each TBSP of Ducoal is 42 cal. While we didn't reach this goal due to AJ gaining a huge amount of weight (we wish!), nonetheless, we are thrilled we no longer have to hunt for KE and can save a whole lot of money.
It is a darn good thing we got the botox in his calf.
Why is it good?
AJ's growing. He has been since he got the botox a month ago. He always grows "up" before "out", so I can always tell when I'm rolling the waist of his pants and shorts, as he loses what little hips and tush he has. He usually grows slowly, which aggrivates his GI doctor but pleases both us and his PT, since it causes him less pain. (His muscles do not stretch at the same rate his bones do, thus, PAIN). But this time around, he's growing faster. Faster than his normal pace.
If he hadn't had the botox he would have lost the mobility to walk.
The funny thing? I shrugged it off. Me! I shrugged it off. One because I was patting myself on the back for stopping my freak out over the botox and just went for it. Two, because he had the botox, so we were lucky, and we can work with the challenges his growth spurt is causing. Three, because his PT walks on water with me and I know she would never let that happen permanently. The growing does hinder us to see how well, exactly, the botox has worked, but if its kept him mobile. t
Which brings me to the curve.
AJ's spine is changing. If left untreated, he could have curvature of the spine. His PT said "He WILL NOT have a curve in his spine, I WILL NOT allow it." When she says those things (like HE WILL WALK) I know we'll be given the tools for preventing curvature and go forward. She had to show me the change a few times before I saw it.
This did scared me, more than the walking thing. But, his PT showed me some funky back stretches to do with him, mandated massaging twice a day (which she has never ever done, she never gives me reps or whatever), and mandated Jer wrestling with him and bouncing him around with "enthusiasm". Somehow I don't think the last two instructions will be that difficult to make happen. Anything we can do to keep him loose and stretched out is now on our agenda.
AJ hasn't been drinking his Kid Essentials. He's actually been drinking water. Plain.Straight.Agua. This is nothing short of a miracle. That I had nothing to do with. After finding out that AJ did drink white milk a few times at school last year, I thought it was time to make the change. He's eating enough in his daily diet to feed a horse, or heck, maybe the whole farm. I think the "let's drink something icky and sweet multiple times a day got to him. AND, its horrible for his already weak teeth.
So, I checked with our GI dietician and gave her my plan of attack: whole milk with 2 TSBP Duocal mixed in, with a daily vitamin. Much to my surprise, we got the all clear. In case you wanted to know, whole milk is 150 cal per 8oz, each TBSP of Ducoal is 42 cal. While we didn't reach this goal due to AJ gaining a huge amount of weight (we wish!), nonetheless, we are thrilled we no longer have to hunt for KE and can save a whole lot of money.
Thursday, September 2, 2010
Vacation Experience Book
I made this experience book for our recent trip to Iowa.
I filled the book with photos of:
Suitcase & Car
AJ in the car & Scenes from the Road
Grandma and Grandpa were kind enough to take pictures of themselves, as well as the outside and inside of their house so I could include them in the book. We were able to talk about where we were going, who was going to be there, where he was going to sleep, eat, and take a bath. I'm pretty sure the G-parents don't want photos of their house online, so you'll just have to imagine the rest of the book.
I purposely used 2" binder rings so that we can add the pictures from our actual trip to the book.
Rocks and Fish
At the very beginning of AJ's summer school sessions, his SLP asked him to sort rocks and fish.
She had foam fish similar to these:
My version:
Pkg of foam door hangers from the dollar store $1
Outline of fish printed from the Internet FREE
I found the rocks at the dollar store too $1
I also made a fish sponge for AJ to paint with. I used a new sponge I already had and used the outline to trace and cut it out.
Sunday, August 29, 2010
Saturday, August 28, 2010
Let's Talk About It
Recently, I've been emailing with Ellen, another mom who's son has CP, and who runs an awesome blog of her own, To The Max. I absoutely love the way Ellen writes. My latest question sparked a blog post about speech devices. Please take a moment to read her post AND the comments HERE. Don't worry, I'll wait for you to read it and come back...
Last night I had a dream. A dream that AJ was at the park playing and all of sudden noticed I was there. He came barrelling across the grass (the dream was equip with slow-motion and I swear Chariots of Fire should have been playing) SHOUTING "Mama Mama Mama." About a thousand times. I woke up so abruptly, as I thought he was really calling me. It was so incredibly real...feeling.
Cruel.
The fact remains that AJ is struggling to communicate. Let me rephrase: He's not forming speech, words, etc. And I don't know which way to turn. All these different mazes and not a guide map for any of them. Everyone has their own opinion, everyone thinks their method is the best. And yes, we know AJ best, but that doesn't mean we know all the answers. Yes, he's made incredible progress, but that doesn't hide the fact that when a stranger talks to him there is no response-in any way shape or form-other than maybe a smile. Well is it that big of a deal? Um, YEAH. It is.
I get angry at other moms at the store with their kids because they have the ability to talk to their children, and have their children talk back to them. It really irritates me when they tell them to stop talking. Yep, something that simple because in mind, that mom probably doesn't undestand what a blessing she truly has in a chatterbox child. I know, these are very broad assumptions, and if that makes me look like an a**, then so be it. I feel this pressure that AJ must talk. I would get into the reasons, but lets just say I'm trying to make it easier for everyone.
I guess perhaps I dont' have anything pertinent to say on the subject this morning. But I do want to thank Ellen for her response, and the responses from her readers. They are all much appreciated.
Last night I had a dream. A dream that AJ was at the park playing and all of sudden noticed I was there. He came barrelling across the grass (the dream was equip with slow-motion and I swear Chariots of Fire should have been playing) SHOUTING "Mama Mama Mama." About a thousand times. I woke up so abruptly, as I thought he was really calling me. It was so incredibly real...feeling.
Cruel.
The fact remains that AJ is struggling to communicate. Let me rephrase: He's not forming speech, words, etc. And I don't know which way to turn. All these different mazes and not a guide map for any of them. Everyone has their own opinion, everyone thinks their method is the best. And yes, we know AJ best, but that doesn't mean we know all the answers. Yes, he's made incredible progress, but that doesn't hide the fact that when a stranger talks to him there is no response-in any way shape or form-other than maybe a smile. Well is it that big of a deal? Um, YEAH. It is.
I get angry at other moms at the store with their kids because they have the ability to talk to their children, and have their children talk back to them. It really irritates me when they tell them to stop talking. Yep, something that simple because in mind, that mom probably doesn't undestand what a blessing she truly has in a chatterbox child. I know, these are very broad assumptions, and if that makes me look like an a**, then so be it. I feel this pressure that AJ must talk. I would get into the reasons, but lets just say I'm trying to make it easier for everyone.
I guess perhaps I dont' have anything pertinent to say on the subject this morning. But I do want to thank Ellen for her response, and the responses from her readers. They are all much appreciated.
Friday, August 27, 2010
Up, Down, Catch 22
Yesterday morning I wrote the "Shenanigans" post. Everything's great, la la la la. I think I set myself up for disaster, sometimes, you know?
We went to his auditory therapy appointment, where his new teacher met us to observe, and it was the holy grail of disaster. While he is tolerating being bilateral again, he is extremely sensitive at times. It comes out of no where. His first major meltdown came after both myself and his therapist praised him. Apparently we were too loud, because it set him off like a fire alarm. Between a combination of giving him some quiet time, then holding him, then showing him his absolute.all.time.favorite.auditory.therapy.time.toy, he calmed. But then go upset again when we took said toy away, because it has lights and spins and in his rough state we knew he'd stim on it. Stim on it? Focus solely on that toy, stare at it and ignore the rest of the world.
While he was screaming, I found myself in yet another Catch 22. I knew if I took his coils off, he'd stop crying, thats what he wanted. We are in very delicate stage right now in that we don't want to develop a dislike for hearing the world, or be in pain, but we don't want him to think he can just take them off whenever he wants and get his way. This is where the "AJ whats wrong...Mama my ear hurt" would come in really handy. I found myself getting worked up, and embarrassed. I know the teacher who came to observe, but I always get nervous when someone is around AJ for the first go around. I would be a bit intimidated if I had a child I was observing and he was screaming bloody murder, wouldn't you? This teacher has been around AJ several times now, so I know better, and perhaps I am not giving her enough credit. But in the moment, I felt myself getting rather worked up and frustrated while I was holding my son, trying to calm him. This is the Mom feels helpless routine.
We kept plodding away with activities and eventually AJ participated, begrudginly at first, but then gave in. We kept our voices calm and cool and continued on. He did do some great listening skills that day.
We wrapped up the session to give AJ's therapist and the teacher a chance to talk. I joined the conversation, where I shared his "OOOO" for "ON" and "AH" during ma-ma-ma. His teacher could tell his body language changed, showing he understood when we'd say "bye-bye" to a toy and he'd look over at his therapist, anticipating the bucket to appear from behind her. From sitting next to him, we saw him pause and look. He participated in a bit more of vocal play this time around. The joint consensus: AJ is inconsistent. Big surprise right? This makes it very difficult to figure out exaclty what AJ can do. Is he vocalizing with intent? Is his imitating?
We left the appointment and made an impromptu stop at the park to meet up with a friend, where AJ proceeded to have a meltdown about the swings. I let him swing for a few minutes and then took him out to see if he would enjoy those rock-back-and-forth-horse-things-on-springs at the park. He screamed bloody murder. A full all out tantrum. After he calmed a bit, we eventually went back on the swings for a short while and he crashed out cold in the car on the way home. While he enjoys swinging, it also causes him to loose where his body is in space. Its very odd. I would have thought since he loves the vestibular movement, it would do just the opposite. Nope. We will keep trying, and hopefully each time he will learn to calm himself. I do know that we can longer swing him for long bouts of time, just because he likes it so much.
We zoomed on over to school for "Meet the Teacher Night". I can't believe how much is classmates have grown. It was great to meet a new parent, who was the carbon copy of me last year. So nervous about her kiddo attending school for the first time. It was nice to be on the other side of the fence and calm her nerves, at least a little bit. We met some of AJ's new classmates and I got some clarity as to how this year is going to work. Very exciting stuff!
We left, due to AJ going into "Mom its loud and I can't take it" mode, and the car ride home was intense. I think I was coming off of a nervous-high intensity day for me and AJ was tired, hungry, and of course, trying to tell me by whining. I sort of barrelled through the door when I got home and Jeremy knew he was on duty for a moment, or three, while I took some time just for me.
I hadn't realized how nervous I had become about AJ returning to school. I know he'll do fine. But I still get nervous. I know the potential this kid has, and I become frustrated when something or even AJ himself stands in his own way! Knowledge is power, and up until yesterday, I didn't have all the pieces. Heaven forbid.
I was upset about his therapy session early in the day. While I know today is a new day and yesterday is behind me, I was still frustrated about that session. Not at AJ, but at the fact he got a blasted ear canal infection at the worst possible time, in the worst possible ear, and is having the worst possible (in our opinion) time bouncing back from it. We have done all this hard work boosting his auditory skills and it sort of is, down the drain. I know, dramatic, but true. As we were walking out, his therapist and I were both really bummed about his sensitivity to sound right now. We don't even have enough to say whether what we are doing is working/not working, in regards to whether we should continue therapy or not. So we decided to keep plugging away, and will continue therapy into the school year. While this makes both Jeremy and I extremely excited, the reasoning behind it made me sad.
I took a long shower and settled into the couch with the "your kid is starting school" packets we received last night. I love paperwork! As I read, I watched my boys wrestle and watch the Packer Game. It was the perfect end to a very hectic day.
We went to his auditory therapy appointment, where his new teacher met us to observe, and it was the holy grail of disaster. While he is tolerating being bilateral again, he is extremely sensitive at times. It comes out of no where. His first major meltdown came after both myself and his therapist praised him. Apparently we were too loud, because it set him off like a fire alarm. Between a combination of giving him some quiet time, then holding him, then showing him his absolute.all.time.favorite.auditory.therapy.time.toy, he calmed. But then go upset again when we took said toy away, because it has lights and spins and in his rough state we knew he'd stim on it. Stim on it? Focus solely on that toy, stare at it and ignore the rest of the world.
While he was screaming, I found myself in yet another Catch 22. I knew if I took his coils off, he'd stop crying, thats what he wanted. We are in very delicate stage right now in that we don't want to develop a dislike for hearing the world, or be in pain, but we don't want him to think he can just take them off whenever he wants and get his way. This is where the "AJ whats wrong...Mama my ear hurt" would come in really handy. I found myself getting worked up, and embarrassed. I know the teacher who came to observe, but I always get nervous when someone is around AJ for the first go around. I would be a bit intimidated if I had a child I was observing and he was screaming bloody murder, wouldn't you? This teacher has been around AJ several times now, so I know better, and perhaps I am not giving her enough credit. But in the moment, I felt myself getting rather worked up and frustrated while I was holding my son, trying to calm him. This is the Mom feels helpless routine.
We kept plodding away with activities and eventually AJ participated, begrudginly at first, but then gave in. We kept our voices calm and cool and continued on. He did do some great listening skills that day.
We wrapped up the session to give AJ's therapist and the teacher a chance to talk. I joined the conversation, where I shared his "OOOO" for "ON" and "AH" during ma-ma-ma. His teacher could tell his body language changed, showing he understood when we'd say "bye-bye" to a toy and he'd look over at his therapist, anticipating the bucket to appear from behind her. From sitting next to him, we saw him pause and look. He participated in a bit more of vocal play this time around. The joint consensus: AJ is inconsistent. Big surprise right? This makes it very difficult to figure out exaclty what AJ can do. Is he vocalizing with intent? Is his imitating?
We left the appointment and made an impromptu stop at the park to meet up with a friend, where AJ proceeded to have a meltdown about the swings. I let him swing for a few minutes and then took him out to see if he would enjoy those rock-back-and-forth-horse-things-on-springs at the park. He screamed bloody murder. A full all out tantrum. After he calmed a bit, we eventually went back on the swings for a short while and he crashed out cold in the car on the way home. While he enjoys swinging, it also causes him to loose where his body is in space. Its very odd. I would have thought since he loves the vestibular movement, it would do just the opposite. Nope. We will keep trying, and hopefully each time he will learn to calm himself. I do know that we can longer swing him for long bouts of time, just because he likes it so much.
We zoomed on over to school for "Meet the Teacher Night". I can't believe how much is classmates have grown. It was great to meet a new parent, who was the carbon copy of me last year. So nervous about her kiddo attending school for the first time. It was nice to be on the other side of the fence and calm her nerves, at least a little bit. We met some of AJ's new classmates and I got some clarity as to how this year is going to work. Very exciting stuff!
We left, due to AJ going into "Mom its loud and I can't take it" mode, and the car ride home was intense. I think I was coming off of a nervous-high intensity day for me and AJ was tired, hungry, and of course, trying to tell me by whining. I sort of barrelled through the door when I got home and Jeremy knew he was on duty for a moment, or three, while I took some time just for me.
I hadn't realized how nervous I had become about AJ returning to school. I know he'll do fine. But I still get nervous. I know the potential this kid has, and I become frustrated when something or even AJ himself stands in his own way! Knowledge is power, and up until yesterday, I didn't have all the pieces. Heaven forbid.
I was upset about his therapy session early in the day. While I know today is a new day and yesterday is behind me, I was still frustrated about that session. Not at AJ, but at the fact he got a blasted ear canal infection at the worst possible time, in the worst possible ear, and is having the worst possible (in our opinion) time bouncing back from it. We have done all this hard work boosting his auditory skills and it sort of is, down the drain. I know, dramatic, but true. As we were walking out, his therapist and I were both really bummed about his sensitivity to sound right now. We don't even have enough to say whether what we are doing is working/not working, in regards to whether we should continue therapy or not. So we decided to keep plugging away, and will continue therapy into the school year. While this makes both Jeremy and I extremely excited, the reasoning behind it made me sad.
I took a long shower and settled into the couch with the "your kid is starting school" packets we received last night. I love paperwork! As I read, I watched my boys wrestle and watch the Packer Game. It was the perfect end to a very hectic day.
Thursday, August 26, 2010
Shenanigans
CP Doctor/PT-Because these two are like sisters at this point. AJ did have botox in his left calf...over two weeks ago. It is a very good thing we got the botox when we did, because amidst this ear canal infection, AJ has also been growing. I swear he's an inch taller each morning he wakes us. We are trying to keep him loose and marvel at his long nights of sleep. It is hard to see how the botox has worked since the growing is throwing a wrench into things.
We did receive confirmation of our appeal being filed with his state insurance, we even received our court date. The good news is: We no longer need to appeal because we were granted more visits due to the botox injection-enough to take us to December. We had also resubmitted to our primary insurance company (it was too late to file a grievance on the original denial from 2009). Another blessing: our primary insurance is covering some PT sessions as well.
AJ is now wearing his AFOs to bed, which has been quite interesting to say the least. They are intended for stretching. Luckily, he has enough natural stretch (hold his calf and bend his foot toward his calf) that he doesn't need serial casting...yet.
His PT again mentioned that AJ may be done with therapy soon. She told me this is remarkable for a child with cerebral palsy. I know. He may need intermittment therapy during growth spurts, but overall, he's nearing the end of PT.
Feeding/Weight-AJ has made progress by leaps and bounds with feeding therapy. I can't even tell you. He's chewing on his right side, using his tongue to place and manipulate foods vs. using his fingers to place. He's biting and chewing on the right side by his own choice-which is quite amazing. He seems to like pickles, salsa, and jalapeno cheddar potato chips. Whoo! His trunk is stronger, he's louder than ever, and his oral motor control has improved significantly. Its always a good thing when his feeding SLP gives me "knuckle bumps" during a session!
Due to his infection, AJ's appetite has been hit or miss. I felt my heart sink when he was weighed at Urgent Care that day at 24lbs 4 oz. He had lost weight. Thankfully, we have no upcoming appointments with his GI (yeah!) so I don't need to be too worried about what he'll say. At his ENT's office he weighed 24lbs 7oz (on Wednesday) so I felt a bit better. Even though I have crazy rules about scales, this time I didn't care. We'll just keep feeding him. I do wish that instead of getting taller all the time he'd grow wider. Te-He.
OT-AJ's fine motor gains and the strength in his hands/arms has exploded. He can now turn a doorknob, he just hasn't figured out how to turn it all the way and pull back to open the door (which is fine with us). He now closes doors fully, opens the refrigerator on his own, and his latest-opens and closes the microwave. It cracks me up. It happens to be on a table in our dining room (since the kitchen is still under construction) so he just goes to it, watches it when he HEARS you turn it on, waits for the beep and opens the door (he knows not to touch whats inside and I'm always close by-no worries). He loves playing with painting dobbers and is very close to drawing lines on a piece of paper. He can handle a scissors, like these, and is learning to cut paper. His left side/arm/hand has been nice and loose despite his growth spurt, swe are thankful for that. I always love it when his therapists say "He's nice and loose!" Yesterday his OT was holding his left arm up and a bit over his head. He didn't mind at all and his body cooperated enough to allow him to do the exercise. I was amazed.
School-Starts in less than a week. I can't believe it. I bought AJ a backpack in the Spring, because they were on sale. I purchased all of AJ's school supplies in early July, and I highly recommend doing that to all Mom's. It saved me so much time and worry, especially with his darn glue sticks. They are always the most impossible thing to find! His newest addition to his supplies: a lunchbox. I can't believe he's going to be at school two full days this years. He's old enough to need a lunchbox...
Tonight is "Meet the Teacher Night" at school. AJ's teacher has changed this year, but we already know her, so no worries there! He'll still be in the same area...I guess the arrangement is hard to explain. He's in good hands! How about that?! I'm anxious to see his face when we walk into school tonight...last time we were there (in early August) he lit up like a Christmas tree walking down to his classroom.
ESY-I'm sure you are wondering why I mentioned we were at school in early August. AJ attended Extended School Year (summer school) from late June to early August, one hour a day, two days a week. We were lucky enough to have 7 weeks of ESY, instead of the typical 5. A huge thanks to AJ's school SLP who took time out of her busy summer with her own family to provide AJ with more opportunities to learn.
Auditory Therapy-Today is our first session back after a three week hiatus. AJs new teacher is coming to observe today, so I am hoping he will do well. He's tolerating both his ears, but has moments where he needs a break, and all this loudness (after a week of no left and only some sound on his right) exhausts him. Between his hearing and growing, he's been averaging 13 hours of sleep a night. Today we will be making the decision to continue with auditory therapy during the school year or not. Jeremy and I would both like to see AJ continue.
Overall-he's doing GREAT.
We did receive confirmation of our appeal being filed with his state insurance, we even received our court date. The good news is: We no longer need to appeal because we were granted more visits due to the botox injection-enough to take us to December. We had also resubmitted to our primary insurance company (it was too late to file a grievance on the original denial from 2009). Another blessing: our primary insurance is covering some PT sessions as well.
AJ is now wearing his AFOs to bed, which has been quite interesting to say the least. They are intended for stretching. Luckily, he has enough natural stretch (hold his calf and bend his foot toward his calf) that he doesn't need serial casting...yet.
His PT again mentioned that AJ may be done with therapy soon. She told me this is remarkable for a child with cerebral palsy. I know. He may need intermittment therapy during growth spurts, but overall, he's nearing the end of PT.
Feeding/Weight-AJ has made progress by leaps and bounds with feeding therapy. I can't even tell you. He's chewing on his right side, using his tongue to place and manipulate foods vs. using his fingers to place. He's biting and chewing on the right side by his own choice-which is quite amazing. He seems to like pickles, salsa, and jalapeno cheddar potato chips. Whoo! His trunk is stronger, he's louder than ever, and his oral motor control has improved significantly. Its always a good thing when his feeding SLP gives me "knuckle bumps" during a session!
Due to his infection, AJ's appetite has been hit or miss. I felt my heart sink when he was weighed at Urgent Care that day at 24lbs 4 oz. He had lost weight. Thankfully, we have no upcoming appointments with his GI (yeah!) so I don't need to be too worried about what he'll say. At his ENT's office he weighed 24lbs 7oz (on Wednesday) so I felt a bit better. Even though I have crazy rules about scales, this time I didn't care. We'll just keep feeding him. I do wish that instead of getting taller all the time he'd grow wider. Te-He.
OT-AJ's fine motor gains and the strength in his hands/arms has exploded. He can now turn a doorknob, he just hasn't figured out how to turn it all the way and pull back to open the door (which is fine with us). He now closes doors fully, opens the refrigerator on his own, and his latest-opens and closes the microwave. It cracks me up. It happens to be on a table in our dining room (since the kitchen is still under construction) so he just goes to it, watches it when he HEARS you turn it on, waits for the beep and opens the door (he knows not to touch whats inside and I'm always close by-no worries). He loves playing with painting dobbers and is very close to drawing lines on a piece of paper. He can handle a scissors, like these, and is learning to cut paper. His left side/arm/hand has been nice and loose despite his growth spurt, swe are thankful for that. I always love it when his therapists say "He's nice and loose!" Yesterday his OT was holding his left arm up and a bit over his head. He didn't mind at all and his body cooperated enough to allow him to do the exercise. I was amazed.
School-Starts in less than a week. I can't believe it. I bought AJ a backpack in the Spring, because they were on sale. I purchased all of AJ's school supplies in early July, and I highly recommend doing that to all Mom's. It saved me so much time and worry, especially with his darn glue sticks. They are always the most impossible thing to find! His newest addition to his supplies: a lunchbox. I can't believe he's going to be at school two full days this years. He's old enough to need a lunchbox...
Tonight is "Meet the Teacher Night" at school. AJ's teacher has changed this year, but we already know her, so no worries there! He'll still be in the same area...I guess the arrangement is hard to explain. He's in good hands! How about that?! I'm anxious to see his face when we walk into school tonight...last time we were there (in early August) he lit up like a Christmas tree walking down to his classroom.
ESY-I'm sure you are wondering why I mentioned we were at school in early August. AJ attended Extended School Year (summer school) from late June to early August, one hour a day, two days a week. We were lucky enough to have 7 weeks of ESY, instead of the typical 5. A huge thanks to AJ's school SLP who took time out of her busy summer with her own family to provide AJ with more opportunities to learn.
Auditory Therapy-Today is our first session back after a three week hiatus. AJs new teacher is coming to observe today, so I am hoping he will do well. He's tolerating both his ears, but has moments where he needs a break, and all this loudness (after a week of no left and only some sound on his right) exhausts him. Between his hearing and growing, he's been averaging 13 hours of sleep a night. Today we will be making the decision to continue with auditory therapy during the school year or not. Jeremy and I would both like to see AJ continue.
Overall-he's doing GREAT.
Thursday, August 19, 2010
Thursday's Book Corner
Seriously. I devoured this book.
I had forgotten how much I LOVE to read.
Other than racing through the Twilight Series,
I haven't read a book in a really long time.
My review of this book: Incredible. A+.
While I certainly cannot travel to three different countries to find myself, I thoroughly enjoyed reading her journey and was sucked in from page 1.
The book was borrowed to me, so I'm going to get my own copy today, so that I can highlight.
Yes, I'm serious. When I started reading I never knew that it was a best seller or had sold 8 million copies, or that women all over the world use it as a bible of sorts. Nope. To me it was just a book.
Eat Pray Love reminded me of how badly I want to travel to Italy and Greece some day. It made me crave Italian food, continue exploring my faith, and kiss my husband goodnight.
Read it.
I did see the movie that just came out based on the book (same title). They stayed true to the book, which was awesome. I do think, though, that if you haven't read the book, the movie is not going to make much sense to you. But that's just me.
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