Today certainly did not feel like the last day in December. Our weather has been more like spring the last two days, with today's temperature hitting 50 degrees and melting all of our snow.
I'm not sure how a new year is upon us.
Already.
2010. We are not sad to see it go, to say the least.
My sweet Gram left us on Ash Wednesday. AJ's 2nd CI surgery (May) seems like it was lightyears ago and was relatively uneventful considering the events that followed. Jeremy's scary diagnosis of multiple sclerosis threw both of us completely out of our element...as if we had such a thing to begin with. Let me assure you, when you are 28.75 years old, you do not think about such things happening to your life partner. AJ's birthday was a blur, as was his 2nd CI activation. Each attempt at a mini-vacation was soured. The pressure to move became overwhelming. And lets not forget AJ's new diagnosis of epilepsy.
Each year, Jeremy and I hope that this will be our year. Not for smooth sailing, or that easy-button on the Staples commercial (nice but not realistic). For a few less bumps, for a break or two, for less drama, less stress, less tears.
Despite all this, our marriage grows stronger. We laugh at each other constantly and worry about each other just as much. We're growing into our own groove as a family, which has its ups and downs. Friendships have grown stronger, some have grown weaker. We have reached the depths of being so emotionally drained, that we can't function. We hold each other up, grieve with each other, and support one another. We take care of each other.
I grew a bit more into my own this year, and continue to do so. Jeremy's career blossomed and opened new doors and opportunities aplenty.
AJ has grown and tolerated all that goes on around him like the SuperStar he is. He just amazes me. He wakes up every morning with a clean fresh slate smile that can take on the world. Despite my heartache about certain things, AJ has made tremendous progress.
I find it so hard to believe that he'll soon turn 5. 5 years old. When did that happen? He's lost his baby face and now grins at me with total boy naughtiness glimmering in his eyes. He's everywhere, and into everything, just like little boys should be.
What will 2011 bring?
2011 will bring us a new home. Around 4am on the morning after Christmas, it suddenly hit me that it was our last Christmas in this house. With the realtor coming last night, it feels like everything is suddenly happening, very fast.
We are hopeful Jeremy will remain symptom-free. We are hopeful AJ's communication skills will increase and that he'll continue to make such terrific gains in his additional therapies. We are hopeful our move will go as smoothly as possible and that we'll find the right house with ease. We are hopeful for some positive changes in our lives!
I hope to finish my book sooner than later and stop holding back what I really want to say. Contrary to popular belief, I do have a filter. I rather large and thick one...depending on the context. I am also hoping to take more time for myself and figure out what exactly I want to be other than/in addition to being AJ's Mom. I'm looking forward to turning our new house into our home. Jeremy is looking forward to his dartball tournaments and finishing his BA (very soon!) and moving on to his Master's.
2011 also brings our 10th wedding anniversary and our first long vacation EVER to Hawaii. We lay in bed most mornings and sigh at the thought of just sleeping all day...with palm trees swaying in the breeze.
I'm still not sure how we've been married 10 years already....
Happy New Year!
Friday, December 31, 2010
Wednesday, December 29, 2010
Tuesday, December 28, 2010
Blue Christmas
I've really been slacking on the posts, haven't I? I would love to promise that will change, but I can't. Rest assure our craziness has not deterred me from thinking of awesome blog posting titles and subjects....
The kitchen cabinet redo was finished the week before Christmas and looks absolutely amazing. We are so used to having open cabinets, that it sure is different opening a door to look for something. I spent most of last week engaged in a mental battle of what had to be done/finished before Christmas vs. what needed to be done to finish the house. It was quite the battle. Even so, I was still asking Jeremy to take bins down to the basement on Christmas Day.
Jeremy and I managed to get the Christmas cards out before Christmas this year...which is quite an accomplishment. I swear, I pick THE putsy-ist projects...but they always turn out amazing. We spent many nights, while watching our DVR'ed shows, cutitng twine, fishing line, and putting them together. Thanks, Honey.
While I'll detail his PECS book more in another post, here is AJ's 1st PECS book:
Vision
It was brought to my attention that AJ's having trouble with using his vision using his PECS. He seems to pay more attention to the book when it is coming towards him, not in front of him.
OT
He's doing well in OT too. We are still working on dressing, which is slow-going. He's attempting to put on his own socks. AJ is trying so hard to open doors and is able to pull his zipper pull up and down on his own. is also able to hold his bowls/plates with his left hand now. See?
The kitchen cabinet redo was finished the week before Christmas and looks absolutely amazing. We are so used to having open cabinets, that it sure is different opening a door to look for something. I spent most of last week engaged in a mental battle of what had to be done/finished before Christmas vs. what needed to be done to finish the house. It was quite the battle. Even so, I was still asking Jeremy to take bins down to the basement on Christmas Day.
Jeremy and I managed to get the Christmas cards out before Christmas this year...which is quite an accomplishment. I swear, I pick THE putsy-ist projects...but they always turn out amazing. We spent many nights, while watching our DVR'ed shows, cutitng twine, fishing line, and putting them together. Thanks, Honey.
Christmas was full of surprises, lots of love, and blessings....
AJ is on winter break this week...with a smidge of a cold still lingering. At least he's not the booger monster like he was early last week.
He's doing well at school, with lots of new gains. He recognizes the "Good Morning" song they at the beginning of each day and knows what is expected of him re: taking his picture from his teacher, standing up, and placing it on the board. Without.being.prompted. Oh how I wish his toddler group teacher at CCHD could see him now. Huge progress.
He no longer needs a sensory break during his morning routine and the time between bathroom trips has increased dramatically. Were talking 2 hours here people. Yesterday marked 1 year that we've been potty training. I was told it would take a year. Right on. Can you imagine we've been at this a whole year? The school staff has a photo of the potty next to the door...which he now goes and grabs independently to tell them he needs to go potty. Soooo exciting. Now, if we could just poop on the potty consistently, that would be marvelous. He's back up to snuff with using the PECS during his speech time, which is another huge gain. He had regressed quite a bit after coming back from Intensives, so we are all thankful he is back up to where he was, choosing between 2-3 pictures.
While I'll detail his PECS book more in another post, here is AJ's 1st PECS book:
It was brought to my attention that AJ's having trouble with using his vision using his PECS. He seems to pay more attention to the book when it is coming towards him, not in front of him.
Sigh. When you have a child with multiple needs, you pick your battles. AJ wearing his glasses on the way to school is one I chose not to fight, until now. When it was brought to my attention that the staff was seeking exercises to help AJ increase use of his vision, I suggested that I start by keeping his glasses on in the morning. He was such a good little boy the first day we tried it last week, he didn't try to take them off at all. I was so proud. The following days, not so much.
You see, its quite a process to get all of his head equipment on and getting it to stay put is another feat. When he pulls his glasses, he ends up pulling his implants off, even with the wig tape, and I end up pulling over 7 times to reassemble him, which doesn't work out because then the tape doesn't stick as well and I'm using very inappropriate language on the way to school. Not exactly the language experience I am supposed to be providing for my kiddo. I am hoping that by waking up his eyes earlier in the day, he will use his vision more appropriately and we can avoid adding vision exercises to his already packed schedule. His ophthalmologist has assured me multiple times that he has no other issues other than near-sightedness and a slight astigmatism.
Cochlear Implants
We are scheduled for his 6-month audiogram for his left implant (the new one) tomorrow. Since we don't have an audiogram for this ear yet, I'm anxious to see where he is. That's right, we have no idea where he is hearing on the left. No dB markings on an audiogram chart. Don't ask why we don't have an audiogram yet. We will be getting one tomorrow, or I'll be bringing him in every week until we get one.
We seem to go through a fair number of ear hooks for his implants. So I was not surprised when the sitter reported she lost one and was panicking. I pulled out our stash and placed another one, only to have it fall off. A small piece of plastic below the "blinking light" is broken off, so a hook won't stay on. I've switched to his backup and will take the other into the clinic tomorrow...along with a coil that I found stuck to the underside of the airconditioning vent in the floor in AJ's room. Huh. We lost that eons ago.
PT
AJ is growing like a weed. I mean, GROWING. To the point of pain. This growth spurt, between ages 4 and 5, is the worst until he's in his teens. GRRRRRRRRRRREAT. He's eating us out of house and home, and he's only 4 1/2. Yes, he's a boy, and boys typically eat you out of house and home, but he's setting a record. I'm sure of it. Despite his growing, we've managed to keep him walking. Deep massages, his TENS unit, long baths, vibration, and lots of home PT is helping a lot. So are naps. He's been on the treadmill and his ball A LOT here at home. You can just see his body relax when he's stretched out on the ball.
We are thankful that we received a quick response from insurance and have been granted more PT sessions. His PT did a 90 minute session two weeks ago and it did WONDERS. Our normal sessions are 45-60 minutes. In January, all of his PT sessions will be 90 minutes. We are working towards better balance in standing and in walking. If he's tight, it is extremely hard for him to bend down or bend a leg to put on his pants, etc. He lacks the balance required for those types of activities. Insurance thinks he's doing so well, they'll stop covering him soon. Which is amazing. We had to stop and think of what we wanted to put as our goals for AJ on this last submission to insurance. The goal is for him to be discharged and only have to see his PT intermittently for periods of growth and spasticity.
Our new sitters are PT students, so it thrills me when I can ask them to do something with him and they know exactly what I am talking about. BONUS. Or they notice when he's tight and needs lengthening. I am just in heaven with these ladies.
AJ loves working on the trapeze bar, yep my kid with CP can use a trapeze bar, and the gigundo therapy ball at his therapy clinic. I've caught him down in the basement a few times, which is...awesome.
And he's tall enough to do this...
He's doing well in OT too. We are still working on dressing, which is slow-going. He's attempting to put on his own socks. AJ is trying so hard to open doors and is able to pull his zipper pull up and down on his own. is also able to hold his bowls/plates with his left hand now. See?
Feeding Therapy
Feeding therapy is going well too. We've been using a VitaStim unit under his chin (pictured below), which works wonders. It speeds up his swallowing and gives him a lot of oral awareness. The VitaStim is a lot like his TENS unit, using electrical stimulation, but on a smaller area. He's acutely aware of when she turns it up too. It's quite interesting to watch him. We are working on getting him to eat hot dogs with a bun (with the dog not cut, so he has to bite it with the bun) and revisiting toasted sandwiches. He lost interest in sandwiches for a while there. He's drinking from an open cup so well, its amazing. He's even able to hold it up even while he's not taking a drip. He'll take a sip, then continue holding his cup up, then take another sip, then put it down.
Today, he had a fantastic session. I mean, it just might have been the best EVER. He self-fed himself a toasted PB&J sandwich, pears, and raisins...without putting his fingers in his mouth to push food to the side...he used his tongue and we could hear beautiful active chewing. His feeding therapist was thrilled, as was I.
Auditory Therapy
We had our best auditory session EVER last week. I'm am very anxious to see how he does in the booth tomorrow. He turned to novel sounds at 6-9 feet distance and really engaged with his therapist. While going through one of the eval's, we discovered he was making some great progress. Considering I leave most of those sessions frustrated and in tears by the time I start the car to leave, this was major progress.
Dental
AJ's teeth, miraculously, are cavity-free. Unfortunately, he still hates the dentist. He still has extremely weak teeth, which we need to keep an eye on. I was quite pleased with his new dental resident, which was a relief. His thumb sucking is pushing his teeth in and out, so we're doing our best to keep his thumb out of his mouth. When I asked why is causes a problem, I also found that not having your top and bottom aligned also makes it more difficult for a person to bite and chew. Well, AJ doesn't need anymore challenges in the eating department, so we're keeping a close eye on him. As he gets older, it keeps decreasing, so we're thankful for that.
Seizures
AJ is so much more alert and aware, its shocking. The seizure medicine is doing its job. I've also seen less and less staring at his hands and self-stimulation. And although I still have to turn my eyes from the right side of the road when I pass where he had his seizure in the car, I am thankful he had it and that we now know about his epilepsy. School reported one short, stare-off-into-space seizure a few weeks ago. Jeremy and I think we have seen a few, but it is so hard to tell. Is he ignoring us or is it a seizure?
I've placed a call to his neurologist's office to schedule another EEG. Ugh. I am not looking forward to that. I wonder if its inappropriate to bring a bottle of wine with me.... The EEG itself is painless, its just a bunch of wires stuck on AJ's head. Its the sleep deprivation, for both of us and his sensory overloaded screaming during the ENTIRE test that does me in. Oh Well. We'd rather know what his brain activity looks like now anyways.
Communication & Cognition
I have repeated the phrase "AJ is non-verbal" over 10 times, to both friends and strangers, and I think its helping it sink in. Even so, I'm devasted. We have given so much faith into hope, hopes that the implants would bring him up to speed in the two areas he was lacking...and here we are grieving again. I find myself asking if the grieving will ever stop. Does that sound dramatic? Perhaps to you, but it is a real question Jeremy and I ask each other a lot.
AJ's inability to communicate what he wants often leads to AJ screaming and crying at the top of his lungs (and his cry is dramatic, pathetic, and oh so pitiful) and me going through the rolodex of his typical wants/needs in my head. When I don't stop on the right tab, it leaves both of us, all too often, on the kitchen floor sobbing together. He's frustrated. I'm frustrated and frustrated for him. I feel like a failure. My patience is tested day in and day out. Lately, I've been short on it.
There are moments where he leads us to what he wants and I'm able to translate for him (ex: leads me to microwave or stove: Mom, I want something warm to eat). He's communicating better at school for potty time and food times. But what about the rest of a human life? Leading me to the refrigerator is not going to get him very far.
We're working with the PECS, and teaching him power signs, because we all believe he's capable of signing what he wants/needs. We are working closely with his school staff, who are as always, simply amazing. We're doing what we can to help him. But sometimes, it is just too much.
His cognitive delays were never more apparent than at Christmas. Where I was delighted to see him sit on Santa's lap at school, but heartbroken when Santa asked him what he wanted for Christmas and....silence.
Jeremy and I believe Christmas is Christ's birthday, as He is the reason for the season (I really don't like that saying as it sounds so cheesy, but there it is). With that said, we do the Santa thing too. Most of us remember Christmas from when we were young and love to watch our own children discover the magic and wonder of Santa and all his wintery friends. You go to church, you do the Christmas program, you explain the nativity, you pray, I even had plans to make a Happy Birthday Jesus cake. There was no magic, and a Mom with a very broken heart. A pity party? Perhaps. But one that I'm still feeling a few days past Christmas. Yes AJ is 4 1/2, and of course I wouldn't expect him to walk out Christmas morning, gasp and run into the living room "Mommy Mommy Santa came!". But the teeny tiny moments I guess I was expecting, like even the moments we experienced last year when he was younger, were null. Our company was great, the food was fantastic, but inside, my heart was crying.
After AJ finished the Intensives in October, AJ's PT and I were discussing how AJ is a great example of how treatment works. She went on about how we were great parents and have worked so hard with him, that this is why is doing so well. She then went on to say that most special needs parents hit a wall, a point where they are just so overwhelmed, they just can't anymore. She still hadn't figured out how I was still doing it. I'm not sure either. But I think I've finally reached that state. So much to juggle all at the same time. *Deep Exhale* I just wrote this huge post over the course of two days and I'm exhausted just writing it.
Wednesday, December 15, 2010
Listen To Your Chocolate
Lately our lives, and house, seem to be taken over by those plastic bins. There are rows and rows in our basement of said bins. You know, the ones on sale every week in the store ads, with the popular color choice right now being red and green...
We are 3 days into our kitchen cabinet redo. Meaning, a very experienced cabinet dude is here. After a year and a half of staring at our cabinets without doors on them (with all so wonderful intentions to paint everything ourselves), I caved and listened to my chocolate. He has stripped, bleached, stained, and sealed our existing base cabinets. The new crown molding is up, and makes me sigh every time I walk into the kitchen. The old scrolly-looking piece over the sink, while appropriate for a 50's kitchen, is now gone, which makes the kitchen look a bit more modern. The new drawers and doors are downstairs waiting in all their glory to be installed tomorrow and Friday.
In the midst of the cabinet redo we've had a handy dude here putting in new storm/screen combos on some of our windows, changing outlets, and doing other various things. Today there were four different people, besides me, mulling around our house. I was just the cruise director.
Roughly 95% of the contents of my kitchen contents are in...you guessed it...bins. Totes. Call them what you want. And yes, these are of the red and green variety. We've done a lot of eating from paper plates, takeout, and meals that don't require cooking on the stove top. Everything is everywhere, in every room, except the bathroom, which seems to be the only room I can keep just the way I like it. Hm.
This week has been rough. Ok, thats an understatement. I'm finding it hard to fit in SuperMom's schedule into my life. I know, SHOCKING. I'm finding it hard to focus on just one thing. This has been the first week where someone, other than myself, Jer, and Grandma, has picked AJ up from and taken him to school. My mind is so focused on getting this house ready to list that there isn't room for much else. I felt horrible as these big brown eyes looked at me standing in the doorway this morning..."Mom, why aren't you coming with me?" Sometimes being AJ's "translator" is heartbreaking. I know my baby boy too well sometimes.
So this afternoon, when AJ came home with a rash and the sitter mentioned he was picking at his ears, I hopped in the car and drove him to urgent care. We don't mess around with the ears. Sure enough, he has an early infection in his left ear. Thank you gut. You come in handy oh-so-often. He was also tested for strep, which came back negative.
I definitely could have continued on with my day without AJ's medical drama, but it wouldn't change the fact that the show must go on. It has been ridiculously hard for me to watch other people mulling around here doing work. Things that I may not be able to do, but for some reason my brain tricks me into thinking, or rather goes into SuperMom mode, and I think I should be doing. Things are stressful enough around here, you can imagine my reaction more chaos.
After I put AJ to bed tonight, I took a long hot bath. I thought about how difficult the week has been, how everything is misplaced. Messy. How life is messy. How I've finally identified my strengths and weaknesses, learned what I truly can and don't have to do all on my own. How I absolutely love my small Christmas Tree that sits on the corner of my bathroom vanity. How I absolutely love Gram's tree sitting in my living room, in all its grandness. How amazed I am that so many things are getting done around here all at once. How thankful I am for skilled workers who know what they are doing and while I'm stressed while they are here, the final product relieves a different type of stress. This process won't last forever, but we're at a point where we must keep going. I'm trying not to do it all-all at once.
AJ gave me the sweetest smile when I put him to bed tonight. He asks to go to bed by leading me to his bed, standing at the foot, looking up at me with those big brown eyes, and slowly reaching for his implants, gently pulling them off. As he snuggled his pillow, he gave me that smile. The smile that reminds me of why we are living and packing our lives in bins. Why we are having windows and cabinets done. Why we are moving in the first place. For a sweet little boy who deserves everything we can give him. There is light at the end of the tunnel.
We are 3 days into our kitchen cabinet redo. Meaning, a very experienced cabinet dude is here. After a year and a half of staring at our cabinets without doors on them (with all so wonderful intentions to paint everything ourselves), I caved and listened to my chocolate. He has stripped, bleached, stained, and sealed our existing base cabinets. The new crown molding is up, and makes me sigh every time I walk into the kitchen. The old scrolly-looking piece over the sink, while appropriate for a 50's kitchen, is now gone, which makes the kitchen look a bit more modern. The new drawers and doors are downstairs waiting in all their glory to be installed tomorrow and Friday.
In the midst of the cabinet redo we've had a handy dude here putting in new storm/screen combos on some of our windows, changing outlets, and doing other various things. Today there were four different people, besides me, mulling around our house. I was just the cruise director.
Roughly 95% of the contents of my kitchen contents are in...you guessed it...bins. Totes. Call them what you want. And yes, these are of the red and green variety. We've done a lot of eating from paper plates, takeout, and meals that don't require cooking on the stove top. Everything is everywhere, in every room, except the bathroom, which seems to be the only room I can keep just the way I like it. Hm.
This week has been rough. Ok, thats an understatement. I'm finding it hard to fit in SuperMom's schedule into my life. I know, SHOCKING. I'm finding it hard to focus on just one thing. This has been the first week where someone, other than myself, Jer, and Grandma, has picked AJ up from and taken him to school. My mind is so focused on getting this house ready to list that there isn't room for much else. I felt horrible as these big brown eyes looked at me standing in the doorway this morning..."Mom, why aren't you coming with me?" Sometimes being AJ's "translator" is heartbreaking. I know my baby boy too well sometimes.
So this afternoon, when AJ came home with a rash and the sitter mentioned he was picking at his ears, I hopped in the car and drove him to urgent care. We don't mess around with the ears. Sure enough, he has an early infection in his left ear. Thank you gut. You come in handy oh-so-often. He was also tested for strep, which came back negative.
I definitely could have continued on with my day without AJ's medical drama, but it wouldn't change the fact that the show must go on. It has been ridiculously hard for me to watch other people mulling around here doing work. Things that I may not be able to do, but for some reason my brain tricks me into thinking, or rather goes into SuperMom mode, and I think I should be doing. Things are stressful enough around here, you can imagine my reaction more chaos.
After I put AJ to bed tonight, I took a long hot bath. I thought about how difficult the week has been, how everything is misplaced. Messy. How life is messy. How I've finally identified my strengths and weaknesses, learned what I truly can and don't have to do all on my own. How I absolutely love my small Christmas Tree that sits on the corner of my bathroom vanity. How I absolutely love Gram's tree sitting in my living room, in all its grandness. How amazed I am that so many things are getting done around here all at once. How thankful I am for skilled workers who know what they are doing and while I'm stressed while they are here, the final product relieves a different type of stress. This process won't last forever, but we're at a point where we must keep going. I'm trying not to do it all-all at once.
AJ gave me the sweetest smile when I put him to bed tonight. He asks to go to bed by leading me to his bed, standing at the foot, looking up at me with those big brown eyes, and slowly reaching for his implants, gently pulling them off. As he snuggled his pillow, he gave me that smile. The smile that reminds me of why we are living and packing our lives in bins. Why we are having windows and cabinets done. Why we are moving in the first place. For a sweet little boy who deserves everything we can give him. There is light at the end of the tunnel.
And I, for once, am listening to my chocolate.
Saturday, December 4, 2010
Why Turkey Why
I suppose I should post about Thankgiving while I still have a picture with pumpkins on the blog. Never mind that today is December 4th.
Thanksgiving was a very stressful day. For those around us, it may not have seemed so, but we've gotten pretty good at playing the game and putting on the smiles.
I thought it would be less stressful not hosting. I was wrong. I had forgotten what it feels like to hop-skip-jump to different places on a holiday. Especially with a kiddo. While we were at our first stop, AJ did well, although I was watching him like a hawk. He was staring off a lot, which caught my attention right away and I quickly became nervous. While I don't think he had a full seizure, I do think there was some abnormal activity going on. Since he has had a seizure while on medication (about 2 weeks ago-at school) I was on high alert. I guess you get that way when your kid has seizures. Despite my anxiousness, it was lovely visiting with family and friends...and petting puppies.
We left late (if anyone ever leaves one place to get to another on time, please share your secret) and picked up my Mom for our next stop. Where I swooped AJ into the bathroom pronto so I could give him his seizure medication (late-which made me upset). He took it well, and I though all would be well with the world. Not so. AJ ate two bites of mashed potatoes and proceeded to have a complete sensory meltdown.
In the middle of his meltdown, a sweet little girl came over and asked me a question. She's definitely in her "Why?" stage. Her mother had warned me beforehand that she wanted to play with AJ, but she explained he needed to eat first. The girl had asked her mother why AJ didn't talk. She had reminded her that he talks with his hands instead. Kudos to that Mom, by the way.
The sweet little blond girl walked up to me and asked, "Why doesn't he talk?"
I answered (feeling like I was lying or not telling the whole truth because AJ only has 5 signs he uses), "He uses his hands to talk."
"But WHY?" said the little girl.
To which I said nothing and fought some major tears that were welling up while AJ was screaming in my lap.
Her mother distracted her and I was off the hook.
What do you tell a sweet young child, who is full of innocence, when they ask such a complex question? It was simple in her eyes. I want it to be simple too sister. My heart was screaming to act how her face looked, like she wanted to whine, "Well thats not fair!!" No, its not. I felt like saying, "Yeah, I wanna know too why he doesn't talk. Lets sit down on the floor and play Candyland and solve the world's problems."
AJ was done, and we left just as quick as we came...or so it felt. Despite the meltdown, it was nice to see friends we hadn't seen in what felt like forever and laugh, even if it was just a little.
After I dropped my Mom off, the tears started. I missed Gram so much that day. The emotion hit me like a ton of bricks and I was not expecting it. The day was hard to begin with; but adding a new routine for "The Day", AJ's meltdown, the why question, and the guilt of not spending more time with Mom, I was one cooked bird myself. I did not expect the day to go perfect. Because they never do, and that's ok. But my heart was hoping for some calm and peace and an opportunity to give thanks. To not have to worry or stress about anything for just a little while. Instead, I was stressed. Jer was stressed. I missed cooking and hosting. Jer missed my cooking, our hosting, and the leftovers.
I am thankful for my loving husband, my amazing son, our parents, my closest friends, AJ's team, AJ's ability to hear and listen, massages, and Starbucks. I am thankful for so much. But the stress? Eh. Sorry stress, I'm not thankful for you....Oh, and pumpkin pie. Love me some pumpkin pie. And Twilight. Can't forget Twilight.
Thanksgiving was a very stressful day. For those around us, it may not have seemed so, but we've gotten pretty good at playing the game and putting on the smiles.
I thought it would be less stressful not hosting. I was wrong. I had forgotten what it feels like to hop-skip-jump to different places on a holiday. Especially with a kiddo. While we were at our first stop, AJ did well, although I was watching him like a hawk. He was staring off a lot, which caught my attention right away and I quickly became nervous. While I don't think he had a full seizure, I do think there was some abnormal activity going on. Since he has had a seizure while on medication (about 2 weeks ago-at school) I was on high alert. I guess you get that way when your kid has seizures. Despite my anxiousness, it was lovely visiting with family and friends...and petting puppies.
We left late (if anyone ever leaves one place to get to another on time, please share your secret) and picked up my Mom for our next stop. Where I swooped AJ into the bathroom pronto so I could give him his seizure medication (late-which made me upset). He took it well, and I though all would be well with the world. Not so. AJ ate two bites of mashed potatoes and proceeded to have a complete sensory meltdown.
In the middle of his meltdown, a sweet little girl came over and asked me a question. She's definitely in her "Why?" stage. Her mother had warned me beforehand that she wanted to play with AJ, but she explained he needed to eat first. The girl had asked her mother why AJ didn't talk. She had reminded her that he talks with his hands instead. Kudos to that Mom, by the way.
The sweet little blond girl walked up to me and asked, "Why doesn't he talk?"
I answered (feeling like I was lying or not telling the whole truth because AJ only has 5 signs he uses), "He uses his hands to talk."
"But WHY?" said the little girl.
To which I said nothing and fought some major tears that were welling up while AJ was screaming in my lap.
Her mother distracted her and I was off the hook.
What do you tell a sweet young child, who is full of innocence, when they ask such a complex question? It was simple in her eyes. I want it to be simple too sister. My heart was screaming to act how her face looked, like she wanted to whine, "Well thats not fair!!" No, its not. I felt like saying, "Yeah, I wanna know too why he doesn't talk. Lets sit down on the floor and play Candyland and solve the world's problems."
AJ was done, and we left just as quick as we came...or so it felt. Despite the meltdown, it was nice to see friends we hadn't seen in what felt like forever and laugh, even if it was just a little.
After I dropped my Mom off, the tears started. I missed Gram so much that day. The emotion hit me like a ton of bricks and I was not expecting it. The day was hard to begin with; but adding a new routine for "The Day", AJ's meltdown, the why question, and the guilt of not spending more time with Mom, I was one cooked bird myself. I did not expect the day to go perfect. Because they never do, and that's ok. But my heart was hoping for some calm and peace and an opportunity to give thanks. To not have to worry or stress about anything for just a little while. Instead, I was stressed. Jer was stressed. I missed cooking and hosting. Jer missed my cooking, our hosting, and the leftovers.
I am thankful for my loving husband, my amazing son, our parents, my closest friends, AJ's team, AJ's ability to hear and listen, massages, and Starbucks. I am thankful for so much. But the stress? Eh. Sorry stress, I'm not thankful for you....Oh, and pumpkin pie. Love me some pumpkin pie. And Twilight. Can't forget Twilight.
Saturday, November 27, 2010
Her First Nomination
Just as I was thinking about closing up shop on this blog...my hubby tells me I was nominated for The Top 50 Mom Blogs on Babble.com. Who? What???
Yep, he found the list on Ellens' blog...you can find me here. **Click on the alphabetical tab, its easier to find.
The Top 50 have already been chosen...but I still feel awesome about being nominated.
It is an odd feeling to put your story out there and not know who, if anyone is reading. I guess someone (outside my immediate circle) IS.
Thanks Peeps!
Yep, he found the list on Ellens' blog...you can find me here. **Click on the alphabetical tab, its easier to find.
The Top 50 have already been chosen...but I still feel awesome about being nominated.
It is an odd feeling to put your story out there and not know who, if anyone is reading. I guess someone (outside my immediate circle) IS.
Thanks Peeps!
Thursday, November 18, 2010
Its the Most Emotional Time...Of The Year
This time of year is always rough for Jer and I. We don't even need to talk about it, we both know how the other is feeling.... This year is no exception.
The beginning of November marked 10 years since Jer's Dad passed. I'm not sure how that much time has lapsed. I do know that I am blessed to have a part of him in my life every day...as Jer has his Dad's personality to a "T". He makes me laugh, even when I don't wanna laugh. He reminds me not to take all things in life so seriously and that its ok to "piss on it" once in a while. As I just re-read the last sentence, I realize that you'd have to know Jer or his Dad to really get that sentence and see the humor in it.
A few days after Thanksgiving 2007 we learned AJ was deaf and my Dad was in the hospital. Five days into December 2007 we learned AJ had cerebral palsy and we lost my Dad just minutes later.
This time of year makes me think of all of those things...especially the people we've lost.
Gram had this insane obession with an appetizer I make...bacon-wrapped waterchestnuts. While she always called it rumaki (which is really bacon-wrapped shrimp), I never corrected her. She always looked forward to them and it was always the first thing on her appy plate. Finding whole waterchestnuts this time of year is always a challenge, but I'd go to 4 different stores to get them because I knew she loved them. I saw a bottle of chili sauce at the store today (an ingredient for this appy) and felt a deep sadness.
Gram always insisted on yams, not sweet potatoes. There is a difference, she'd say. She taught me how to make them her way...and after that, it became my job to make them. She'd laugh at my commentary when I clean and prep a turkey ("Eww", "Gross", "Ahhh!"-when its slippery), "Blech", to mention a few choice words). She'd watch me closely as I made the cranberry jello mold. She never did notice I made it with sugar-free jello. Horrors! :)
She'd insist on a grandiose table setting, which always meant my Mom and I would be running around like chicken's with our heads cut off trying to make it just perfect. Gram would always tell us girls what a good job we did. That made it all worth it. Her famous apple pie was always made the morning of Thankgiving (right, Mom?!) and I swear I 've never tasted a pie like it. White Zinfandel (she'd call it ZinFondle) was a must, as was the green bean almondine. No green bean casserole!
When Jeremy came into my life, and it was clear he was staying put, she was determined to make sure he had enough to eat. It took quite a few years before I broke down and told her he doesn't like turkey all that much. Dark meat if anything. She took note and made sure Jer got his dark meat.
When AJ arrived, her Thankgiving meals were all about watching AJ. What she ate became less and less, she focused her energy on watching AJ eat and entertain us all. Nothing else mattered except AJ.
She'd be disappointed that I'm not hosting Thanksgiving this year. It was a very difficult decision for me to make. Although I do hope that in that disappointment, she'd understand why. While I have no doubt this year's Thankgiving will be wonderful, it will be different. I miss her every day and find it incredibly odd to talk about her in the past tense.
It is amazing to think of how well I knew her. If she was here, she'd ask how AJ is doing on his seizure medication, she'd ask him "When are you going to talk?", and call him handsome a million times. She'd be making sure I was prepping each meal her way and kindly enduring my constant chatter. She'd have the conversation with my Mom about the silverware and asking if she could help in anyway, to which the both of us would kindly shout "No!" She'd ask whether my book was finished. She'd tell us where to go in Hawaii on our anniversary trip next year. She'd tell stories of her island adventures...no doubt throwing in an embarrassing tale or two about me.
I will be forever grateful for the time I was given with Gram. While she won't be joining us for Thankgiving this year, I'm sure she'll be having her favorite appy and a glass of Zinfondle. Yep, I'm sure of it.
The beginning of November marked 10 years since Jer's Dad passed. I'm not sure how that much time has lapsed. I do know that I am blessed to have a part of him in my life every day...as Jer has his Dad's personality to a "T". He makes me laugh, even when I don't wanna laugh. He reminds me not to take all things in life so seriously and that its ok to "piss on it" once in a while. As I just re-read the last sentence, I realize that you'd have to know Jer or his Dad to really get that sentence and see the humor in it.
A few days after Thanksgiving 2007 we learned AJ was deaf and my Dad was in the hospital. Five days into December 2007 we learned AJ had cerebral palsy and we lost my Dad just minutes later.
This time of year makes me think of all of those things...especially the people we've lost.
Gram had this insane obession with an appetizer I make...bacon-wrapped waterchestnuts. While she always called it rumaki (which is really bacon-wrapped shrimp), I never corrected her. She always looked forward to them and it was always the first thing on her appy plate. Finding whole waterchestnuts this time of year is always a challenge, but I'd go to 4 different stores to get them because I knew she loved them. I saw a bottle of chili sauce at the store today (an ingredient for this appy) and felt a deep sadness.
{I've shared the recipe for Bacon-Wrapped Waterchestnuts below}
Gram always insisted on yams, not sweet potatoes. There is a difference, she'd say. She taught me how to make them her way...and after that, it became my job to make them. She'd laugh at my commentary when I clean and prep a turkey ("Eww", "Gross", "Ahhh!"-when its slippery), "Blech", to mention a few choice words). She'd watch me closely as I made the cranberry jello mold. She never did notice I made it with sugar-free jello. Horrors! :)
She'd insist on a grandiose table setting, which always meant my Mom and I would be running around like chicken's with our heads cut off trying to make it just perfect. Gram would always tell us girls what a good job we did. That made it all worth it. Her famous apple pie was always made the morning of Thankgiving (right, Mom?!) and I swear I 've never tasted a pie like it. White Zinfandel (she'd call it ZinFondle) was a must, as was the green bean almondine. No green bean casserole!
When Jeremy came into my life, and it was clear he was staying put, she was determined to make sure he had enough to eat. It took quite a few years before I broke down and told her he doesn't like turkey all that much. Dark meat if anything. She took note and made sure Jer got his dark meat.
When AJ arrived, her Thankgiving meals were all about watching AJ. What she ate became less and less, she focused her energy on watching AJ eat and entertain us all. Nothing else mattered except AJ.
She'd be disappointed that I'm not hosting Thanksgiving this year. It was a very difficult decision for me to make. Although I do hope that in that disappointment, she'd understand why. While I have no doubt this year's Thankgiving will be wonderful, it will be different. I miss her every day and find it incredibly odd to talk about her in the past tense.
It is amazing to think of how well I knew her. If she was here, she'd ask how AJ is doing on his seizure medication, she'd ask him "When are you going to talk?", and call him handsome a million times. She'd be making sure I was prepping each meal her way and kindly enduring my constant chatter. She'd have the conversation with my Mom about the silverware and asking if she could help in anyway, to which the both of us would kindly shout "No!" She'd ask whether my book was finished. She'd tell us where to go in Hawaii on our anniversary trip next year. She'd tell stories of her island adventures...no doubt throwing in an embarrassing tale or two about me.
I will be forever grateful for the time I was given with Gram. While she won't be joining us for Thankgiving this year, I'm sure she'll be having her favorite appy and a glass of Zinfondle. Yep, I'm sure of it.
Bacon-Wrapped Waterchestnuts
2-4oz cans WHOLE waterchestnuts
1 lb bacon-uncooked
1/4 cup mayonnaise
1/4 cup chili sauce
1/2 cup brown sugar
Cut bacon strips in half. Wrap 1/2 slice of bacon around each waterchestnut and secure with a toothpick. Place in a shallow baking dish Mix mayo, chili sauce, and brown sugar. Pour over bacon wraps.
Bake @ 350 for 45 minutes.
Tuesday, November 16, 2010
Some New Things
AJ blew raspberries on Saturday.
I know, to most, not monumental. But to us...it is. I actually had to physically stop, listen to the sound, and then look at his mouth to realize what he was doing...because he's never done it before. He continued down the hall, sputtering sweet raspberries out of his mouth all the way into the living room.
I heard them again yesterday, and today in the car.
One of his very first goals for speech @ school was to blow raspberries. At first, I thought it was such an 'odd' goal to have. I mean, really, who thinks blowing raspberries is essential to life? I knew why it was a goal, although it is a little funny to see the word raspberries written in regards to your child's education. It is a huge step in oral motor strength and a whole bunch of other things having to do with his mouth that I won't explain...but trust me, this is awesome.
He's responding to more and more verbal prompts...close the door, sit down, no (followed by putting the forbidden object back before I even motion for him to do so), climb up in your chair, put it down, bye-bye, turn it on, turn it off, I could go on.
He's decided that bathtub (sans water) is his new play area. Which rocks, because it means he's crawling in and out of the tub all.on.his.own multiple times a day and my PT brain is doing a happy dance all the while he's collecting toys in his new sanctuary.
AJ's breakthroughs are momentus. I mean, its almost as if Zeus is calling down to us with lightening and thunderbolts to get our attention-HEY! This kid is making progress. It is a gentle reminder of how sweet it is to not take anything AJ does for granted.
As we were heading home from feeding therapy tonight, I heard a sound from the backseat that made me slam on my brakes and turn around (no worries, there were no cars around me).
"AH-BEH-BEH"
Yeah. How awesome is that.
All of these new things, combined with an "AJ had a good day" report from school and a nice long hot shower have made this wicked crazy day end on a good note.
I know, to most, not monumental. But to us...it is. I actually had to physically stop, listen to the sound, and then look at his mouth to realize what he was doing...because he's never done it before. He continued down the hall, sputtering sweet raspberries out of his mouth all the way into the living room.
I heard them again yesterday, and today in the car.
One of his very first goals for speech @ school was to blow raspberries. At first, I thought it was such an 'odd' goal to have. I mean, really, who thinks blowing raspberries is essential to life? I knew why it was a goal, although it is a little funny to see the word raspberries written in regards to your child's education. It is a huge step in oral motor strength and a whole bunch of other things having to do with his mouth that I won't explain...but trust me, this is awesome.
He's responding to more and more verbal prompts...close the door, sit down, no (followed by putting the forbidden object back before I even motion for him to do so), climb up in your chair, put it down, bye-bye, turn it on, turn it off, I could go on.
He's decided that bathtub (sans water) is his new play area. Which rocks, because it means he's crawling in and out of the tub all.on.his.own multiple times a day and my PT brain is doing a happy dance all the while he's collecting toys in his new sanctuary.
AJ's breakthroughs are momentus. I mean, its almost as if Zeus is calling down to us with lightening and thunderbolts to get our attention-HEY! This kid is making progress. It is a gentle reminder of how sweet it is to not take anything AJ does for granted.
As we were heading home from feeding therapy tonight, I heard a sound from the backseat that made me slam on my brakes and turn around (no worries, there were no cars around me).
"AH-BEH-BEH"
Yeah. How awesome is that.
All of these new things, combined with an "AJ had a good day" report from school and a nice long hot shower have made this wicked crazy day end on a good note.
Monday, November 15, 2010
Family Match Game
One of the first theme for AJ's preschool class was Families. I picked up this at Walmart one day (because Daddy likes Curious George and it was cheap):
I printed each sheet twice...
And ended up making our very own Family Match Game!
I made a simple two column/three row table in Microsoft Word. I cropped as needed, then copied and pasted family photos into each space, sizing each to 2.5x 2.5 inches. Easy Peasy.
I printed each sheet twice...
Then cut them out...
Then matched everyone up to double check I had everyone present...
Then laminated them and cut them out. I place them face down, with the white side of the paper facing up, and AJ has to match his family and friends. We are working on a set of 4 right now (which means 2 people), but I made this with the intent to make it more challenging as we go along. I plan to add our pets and his school staff to this game too.
FUN!
FUN!
Labels:
awesome craftiness,
cognition,
family,
family fun,
friends,
language activity
School Experience Book
I asked AJ's school staff to take pictures for this school experience book. They took pictures of each part of his day along with photos of themselves (thank you!). You'll have to use your imagination on this one, folks. The book chronicles our day with a story flow like this: We drive up to school...walk in the doors...there's Mrs. X...and there's Mrs. Y, and there's Z......then its snack time...then we eat lunch...then we have gym...then rest time...then Mommy picks you up...you get the picture. This book was extremely helpful when AJ returned to school after being out a week for Intensives. I also use it on Sunday nights a lot, to prep for the new school week.
I found a "school" themed pack of scrapbook paper in the $1 bin at Target last year and held on to it, knowing I would use it somehow in the future. I made the cover with scrap cardstock, scrap crayon printed paper, and a sticker I got on clearance (last year) for 25 cents.
I found a "school" themed pack of scrapbook paper in the $1 bin at Target last year and held on to it, knowing I would use it somehow in the future. I made the cover with scrap cardstock, scrap crayon printed paper, and a sticker I got on clearance (last year) for 25 cents.
Pumpkin Spice Scented Play Dough
Homemade Play Dough
1 cup flour
1/2 cup salt
1 TBSP cooking oil
1 TBSP cream of tartar
1 cup water
Food coloring
Add-Ins: spices, glitters, etc.1 tsp or more
(add to your liking-I used about 2 1/2 tsp of pumpkin pie spice)
Sunday, November 7, 2010
JDRF Walk 2010
Dr. Jain's Crew
JDRF Walk To Cure Diabetes 2010
JDRF Walk To Cure Diabetes 2010
To see a really cool timeline of how far treatment of diabetes has come and more milestones, click HERE.
Make-Your-Own Mud Pudding
As I've mentioned before, AJ's preschool class has themes throughout the year. This last Spring (I said I was behind in posting, this is like way behind) one of the themes was The Farm. They also used the book Mrs. Wishy Washy. I did some searching on one of my favorite websites and found this:
Pudding in Baby Food Jar Recipe-Great to Use the book Mrs. Wishy Washy
Supplies:
1 box SUGAR FREE chocolate pudding
You must use sugar free or it won't turn out
Baby food jars (emptied/washed/dried)
Milk
*Optional: animal crackers
Measure 1TBSP AND 1 TSP of pudding
Place into jar.
Add 1/4 cup milk
Place lid on tight and SHAKE!
It will darken as it thickens...
Add some animal crackers...
Enjoy!
For the original recipe and a printout of the directions, click HERE.
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