We didn't plan anything for AJ's birthday last week. Mainly because it has been nothing short of insanity around here. On a whim, I decided to take him for a birthday lunch at our favorite Latin-American restaurant. Since it was a beautiful day, I asked to be seated on the patio.
It was the most depressing lunch I've ever experienced. I went in with no expectations whatsoever, mind you. We take AJ out to eat enough that he understands the concept and since the boy loves to eat-it is a win/win. This was the first time I had taken him on my own, without Jeremy. His presence was sorely missed. Suddenly, I was whacked into reality land. My child doesn't talk.
In fact, he didn't make a peep the entire hour we were there. Our waitress was working way to hard to earn her tip and for some reason talked to AJ at a much louder decibel than she did to me. He didn't respond. "Here you go buddy," she said. He stared off at God knows what and continued to methodically dip his chips in salsa. "Are you hungry?" "Do you want a spoon?" "Be careful, its hot," she said. Usually his lack of participation is deflected by the conversation between Jeremy and I and the server. Because we are talking, the spotlight is directed away from AJ's inability to talk. Don't misunderstand me, we certainly make him part of our conversations.
I asked him several times if his food was good. "Is it good? Mmmmmmmm." "Do you want your juice?" "Say, more please." "Mommy loves you." I felt so foolish. I felt like I was talking to myself. A train passed and I tried my hardest to get him to look. Its way to far for him to focus and see, I thought. He ignored me. I picked at my enchiladas and did my Mommy duty scrapping the rice on AJ's plate into the middle to help him get it on the spoon, instead of the patio. A couple was seated on the patio and I felt the eyes of curiousity shifting to our table-a lot. Just ask what the damn things are, would you? I left a healthy tip (even though she annoyed me, AJ made a huge mess and I'm that person who tips heavily on behalf of my child) and we left.
I sat in the parking lot and bawled. Perhaps I shouldn't have picked his birthday to make such a journey solo. I really didn't think it was that big of a deal. I cried until we returned home, when soon it was time to change and schlep out to his first hippotherapy riding session. No time to dwell.
Lately, AJ's pool therapy sessions have been at times where the club's day campers are in the pool. Clearly, I am used to a quiet house because 25-30 kids in a pool make me cringe and go into sensory overload. But today, I could not stop staring at them. Watching how the children interact with each other and were just able to move their bodies in ways I can only hope AJ will learn to. How the lifeguard blew her whistle and all of the children stopped (ok, paused) and listened (listened like kids sorta listen). They were independent, as independent as grade-schoolers can be, and enjoying life. AJ was enjoying every second of his pool time, but I know the reality of why he's really in the pool. Today, I just couldn't turn reality off.
I've been hounded as to what we are doing for AJ's birthday, and to be honest, I'm sad about his birthday this year. I'm not in a mood to put on a pretend face and have a huge shabang, only to hide my true heartache at such events. I'm still debating on hosting a little shin-dig for his little friends, but I think that's all we'll do. Last year, I felt the need to press on with AJ's birthday despite Jer's brain issues. Considering Jeremy doesn't remember any of his son's birthday party and all AJ cared about was the swings, I'm not sure it was worth it.
I am not sad that AJ turned 5. I am so proud of my little man. He's not a baby anymore and shows me more and more every day that he's turning into a little boy. I am sad that he does not understand the concept of "Happy Birthday" being sung to him. I am sad that he doesn't understand what a birthday is-even the childlike concept of this is the day I get lots of presents and cake! I am sad his hearing age is 7-8 months. I am sad his language age is 6-8 months. Months. Not years. Sad at how many words and sentences I speak every day and receive no response. At all. I am tired of hearing about all the things he has yet to do. I am sad he does not know his colors, numbers. I just read that most children at the age of 7 are reading chapter books. Say what? He can't sign or say Mommy when he needs me. I am all too often overwhelmed when he screeches or whines and I cannot decipher exactly what it is he wants. I melt at the sight of AJ's smile when he sees his little buddy at summer chool and wish so very badly I could snap my fingers and provide siblings for him. So many things make me sad.
I remember sobbing, uncontrollably, to one of AJ's therapist's last year. It was the first time I've ever lost it, in front of anyone other than my husband when talking about AJ. She had had the balls to speak the truth to me and I stifled my crying until three years of holding it in broke me and I sobbed aloud, "It wasn't supposed to be like this!!!" The therapist cried with me. I'm feeling that way again. Surrounded by the normalcy of others and our grave differences is literally suffocating me. Days have become unbelievably full of these hard moments. And I'm not sure why. I'm grieving. This, a fact. But why such a full-on sadness? I feel like were stuck and things are never going to change or improve in regards to AJ's communication skills. Is it my fault? What I am I not doing enough of? I feel guilty for being tired and for getting angry that I'm doing all that I am supposed to and we're still not getting anywhere. Isn't this my job as a mother?
Hard Moments Are Hard.
Friday, July 8, 2011
Thursday, July 7, 2011
Thursday's 10
1. We are on our second week of summer school and AJ is loving it. This kid would loooove year-round school. I am very impressed with his summer school staff. I saw immediate growth on Day 1, just sitting and watching him with the staff. One the first day he did conditioned play perfectly, responding to 12/12 sounds. Stinker. Now if he'd only do that in the booth at his audiology appointments. I've purchased an empty coffee can in hopes that this will help him keep the idea consistently across different environments. They use a coffee can at school. I mean he did the whole hold the block to my cheek, waited, listened, and dropped the block in the can. He's totally got it.
2. AJ turned 5 last week. I'm not sure how or when that happened. How is he getting so old, so fast? Luckily, he was able to finally participate in hippotherapy riding on the day of his birthday. He rode a horse named Dell and fell asleep while riding. His body was so relaxed. Watching him ride brought on some tears from this Mama. He looked so grown up in his helmet, riding a horse. Why no pictures? Because I forgot my phone aka camera. The therapy certain paid off, as his gait has been much slower and more controlled. Yesterday he rode again, riding Chubs, a smaller horse, who seemed to keep him awake! He rode backwards a few times and even got to experience a trot a few times. Being on a smaller horse gave him the opportunity to sit at face level with the OT and other facilitators working with him and Chubs. I saw great eye contact, turning to his name, and turning to either of the girls when they talked to him. He also let out some hilarious giggles during the trot. Again today his gait is slower and he seems to be more controlled. Except for his left foot.
3. Oh the left foot. In the words of AJ's PT, "His left foot looks horrible". Yes, it does. It is turning in so much it is hindering his walking. So even though his gait is improved with the riding, his foot is messing things all up. Meet AJ's newest piece of equipment:
Behold the night splint, in all it's glory. We have an appointment to have him casted/fitted for it in the next few weeks. He'll wear it at night while he's sleeping. At least I hope he will. The DAFO (thats what its called) is designed to gently stretch while resting. I'm not going to get into what the next steps are if this doesn't work. We're just going to be positive and hope this splint, along with the massaging, e-stim unit, and keeping him mobile will do the trick.
4. A few weeks after the regular school year ended, I spoke with the school district vision specialist. AJ is very hit or miss with his vision. During his IEP I stated I would contact the vision specialist to see what suggestions she might have for exercises/things for us to practice using his vision here at home over the summer. She had some great suggestions and we've been incorporating them into our daily routine rather easily. He's able to follow point prompts, but not long-distance point prompts. For example, if I point to the front door from the couch, he follows. If Rocky comes running with the frisbee across the front yard, he tracks Rocky running. Now, get him to stop and listen (with success) and then point prompt with the verbal use of "look!" and he's lost. He hears the sound, but for some reason he's not connecting to look at the object. He hears planes, trains, the huge tractors and fast trucks that barrel down our road, and even the squeaky stop-and-go of the garbage truck yesterday. But despite standing in the middle of our driveway with me saying look and pointing, he was lost. So, we'll keep working on it. It is more difficult for him to figure these things our considering he was pretty much without two of his senses for a very long time.
5. I cannot get enough of this song:
6. We were graciously given a telephone interview instead of a court date regarding our appeal to the State regarding their denial of both physical and speech therapy for AJ. After reading a 9-page letter written by the reviewer who denied the case, writing paragraphs upon paragraphs as to why my son, who should really just be called Case #XYZ should not have speech therapy, I needed a few days to cool off. Wow. I am hoping the judge hears the truth from myself and his therapists as to why AJ needs therapy. I'm so baffled as to who would think that we want our kids to have these therapies just for fun. Weeeee! Get real. I am super thankful that we do not have to travel to the not-so-nice area of Milwaukee for a court date.
7. Our house looks like a cross between a newlywed pad and a frat house. There is stuff everywhere, as I've begun sorting and purging as we are packing. Our bedroom lamps are sitting on plastic totes. Maybe we should have Ramen noodles tonight as a tribute to our early days as a couple! I am not feeling overwhelmed though, which you would totally think I would be. I'm going about things rather orderly and we actually have a lot already packed, so there isn't too much more to do.
8. It is hard to believe I have finished three courses toward my Bachelor's already. I'm enjoying my new class, Children's Literature. I took the class years ago at a different university and it was my favorite class. I love learning about Caldecott & Newbery award winners, researching authors, and learning the history behind children's literature. It certainly is a whole lot more fun than polynomials.
9. AJ's ear canal infection last summer was awful. Awful. It took us months to get him to wear both of his cochlear implants again. When our summer heat showed up, I found myself terrified to take him outside in the humidity. We cannot have this happen again. On a whim, thinking I was a complete schmuck for considering this, I called our ped's office and asked if there was a way to prevent this from happening. Absolutely, she said. We are using swimmer's ear drops. Hopefully this will deter the humidity from creating another beastly infection for our little guy. But I'm still nervous about it. Just so you know.
10. Kate Middleton is stunningly beautiful. Isn't she? I'm not one for fashion, but I find myself clicking on online bits about her wardrobe wherever she is at that exact moment. She could make a burlap sack look good.
2. AJ turned 5 last week. I'm not sure how or when that happened. How is he getting so old, so fast? Luckily, he was able to finally participate in hippotherapy riding on the day of his birthday. He rode a horse named Dell and fell asleep while riding. His body was so relaxed. Watching him ride brought on some tears from this Mama. He looked so grown up in his helmet, riding a horse. Why no pictures? Because I forgot my phone aka camera. The therapy certain paid off, as his gait has been much slower and more controlled. Yesterday he rode again, riding Chubs, a smaller horse, who seemed to keep him awake! He rode backwards a few times and even got to experience a trot a few times. Being on a smaller horse gave him the opportunity to sit at face level with the OT and other facilitators working with him and Chubs. I saw great eye contact, turning to his name, and turning to either of the girls when they talked to him. He also let out some hilarious giggles during the trot. Again today his gait is slower and he seems to be more controlled. Except for his left foot.
3. Oh the left foot. In the words of AJ's PT, "His left foot looks horrible". Yes, it does. It is turning in so much it is hindering his walking. So even though his gait is improved with the riding, his foot is messing things all up. Meet AJ's newest piece of equipment:
Behold the night splint, in all it's glory. We have an appointment to have him casted/fitted for it in the next few weeks. He'll wear it at night while he's sleeping. At least I hope he will. The DAFO (thats what its called) is designed to gently stretch while resting. I'm not going to get into what the next steps are if this doesn't work. We're just going to be positive and hope this splint, along with the massaging, e-stim unit, and keeping him mobile will do the trick.
4. A few weeks after the regular school year ended, I spoke with the school district vision specialist. AJ is very hit or miss with his vision. During his IEP I stated I would contact the vision specialist to see what suggestions she might have for exercises/things for us to practice using his vision here at home over the summer. She had some great suggestions and we've been incorporating them into our daily routine rather easily. He's able to follow point prompts, but not long-distance point prompts. For example, if I point to the front door from the couch, he follows. If Rocky comes running with the frisbee across the front yard, he tracks Rocky running. Now, get him to stop and listen (with success) and then point prompt with the verbal use of "look!" and he's lost. He hears the sound, but for some reason he's not connecting to look at the object. He hears planes, trains, the huge tractors and fast trucks that barrel down our road, and even the squeaky stop-and-go of the garbage truck yesterday. But despite standing in the middle of our driveway with me saying look and pointing, he was lost. So, we'll keep working on it. It is more difficult for him to figure these things our considering he was pretty much without two of his senses for a very long time.
5. I cannot get enough of this song:
6. We were graciously given a telephone interview instead of a court date regarding our appeal to the State regarding their denial of both physical and speech therapy for AJ. After reading a 9-page letter written by the reviewer who denied the case, writing paragraphs upon paragraphs as to why my son, who should really just be called Case #XYZ should not have speech therapy, I needed a few days to cool off. Wow. I am hoping the judge hears the truth from myself and his therapists as to why AJ needs therapy. I'm so baffled as to who would think that we want our kids to have these therapies just for fun. Weeeee! Get real. I am super thankful that we do not have to travel to the not-so-nice area of Milwaukee for a court date.
7. Our house looks like a cross between a newlywed pad and a frat house. There is stuff everywhere, as I've begun sorting and purging as we are packing. Our bedroom lamps are sitting on plastic totes. Maybe we should have Ramen noodles tonight as a tribute to our early days as a couple! I am not feeling overwhelmed though, which you would totally think I would be. I'm going about things rather orderly and we actually have a lot already packed, so there isn't too much more to do.
8. It is hard to believe I have finished three courses toward my Bachelor's already. I'm enjoying my new class, Children's Literature. I took the class years ago at a different university and it was my favorite class. I love learning about Caldecott & Newbery award winners, researching authors, and learning the history behind children's literature. It certainly is a whole lot more fun than polynomials.
9. AJ's ear canal infection last summer was awful. Awful. It took us months to get him to wear both of his cochlear implants again. When our summer heat showed up, I found myself terrified to take him outside in the humidity. We cannot have this happen again. On a whim, thinking I was a complete schmuck for considering this, I called our ped's office and asked if there was a way to prevent this from happening. Absolutely, she said. We are using swimmer's ear drops. Hopefully this will deter the humidity from creating another beastly infection for our little guy. But I'm still nervous about it. Just so you know.
10. Kate Middleton is stunningly beautiful. Isn't she? I'm not one for fashion, but I find myself clicking on online bits about her wardrobe wherever she is at that exact moment. She could make a burlap sack look good.
Friday, June 24, 2011
Cardinal Cuteness
Getting his new duds.
AJ's Buddy, AJ, Daddy
Shaking hands with the coach.
Running home.
What is this thing on my hand?
{And why is it pink?}
Snack Time.
Throwing.
I'm Done.
Hiya Mom!
Wednesday, June 22, 2011
Tuesday's 10
1. AJ is tall enough to reach the middle of the kitchen countertops and is tall enough to climb out of the hammock swing on his own. I'm trimming his fingernails around every 5 days. Growth.spurt.
2. AJ negotiated a curb/step all on his own the other day, without any assistance. I total free-step. It.was.amazing. It was all in normal walking stride too.
3. Check out Mr. Mini-Golf:
2. AJ negotiated a curb/step all on his own the other day, without any assistance. I total free-step. It.was.amazing. It was all in normal walking stride too.
3. Check out Mr. Mini-Golf:
4. AJ begins summer school next week. I am POSITIVE he will be all smiles when we pull up to his school and may just leap out of the car. He'll have summer school 3 days a week until the end of July. While I had moments at the end of this school year of really missing him during the day, I sorta, kinda, do dread summer. AJ is not that kid who sings "schooooool's for the summerrrrrrrrrrr" on the last day. He loves school. While we do our best to include fun activities here at home, its just not the same environment. I can't seem to cram in as much as they do at school. He's at that age where home is boring. Outside is fun, the park is fun, anywhere but home is f.u.n. So I am thankful he'll be getting a taste of school, and he'll have the chance to carry-over some skills from last year. Of course, he had a huge learning explosion at the end of the year. Always. That kid.
5. Totally random thought-I have 7 laundry baskets. Seven. Why do I have seven laundry baskets? Why do I need that many?
6. AJ partcipated in a local challenger baseball league in the beginning of June. So many amazing parents, amazing kids, and amazing volunteers. The league was started by a member of our very own Milwaukee Brewers, Marcus Hanel, and his wife. When I called to inquire about the program and sign AJ up, I had no idea that I was speaking to an MLB player's wife! The program really is wonderful.
(Pictures coming-for some reason Blogger won't upload for me right now)7. I'm hoping we'll have some consistent summer weather soon. It is supposed to be beautiful this weekend. We're having a rummage. I haven't done a rummage in, oh 5 years, so this should be interesting.
8. AJ's 3rd hippotherapy riding session was cancelled yesterday-due to the weather. That is 3 in-a-row we've missed. I really, really, really hope he can ride next week. It is a very good thing I signed him up for more than 1 session!
9. I am trying my hardest to get through a book a friend gave me. Even though the book is barely an inch thick, I'm stuck. Same goes for a yogi book another friend shared with me. Why can't I get through any of these?!
10. I'm a bit hesitant in posting this, since we're still kinda waiting to see when the other shoe drops. And, we're pinching ourselves to make sure this is really happening. Jeremy unexpectedly lost his job a few weeks ago. He was offered and accepted a new position for a large company that has a large presence here in the Milwaukee area. We are SO thankful. In addition, we found a new home in Waukesha. We *should* be moving early August. The best part? Well, ok, it truly isn't the best part of this all. What makes me excited? The house is 10 minutes from AJ's school. 10 minutes! We're hoping once we are moved and settled, we'll be able to relax. Just a little. That would be nice.
Saturday, June 11, 2011
Character
While starting our final sort through/packing, I stumbled upon this book from my first year in college.
I have no idea how my brain comprehended the contents. Seriously. I saved the book because it was used my in favorite college course, Foundations of Education, and reminds me of my favorite professor. And, all my notes on the inside and back covers make me feel smart.
The first page I turned to boasted this note I had written in the margin:
Am I displaying poor or bad character as a special needs mom? Am I setting a bad example?
The title SuperMom was given without my consent. I do not remember signing a release allowing that title to be used in reference to me, myself, and I. I was not given a kick-ass costume when AJ was placed in my arms. No sequins, leather, or push-up anything. I don't need push-up anything, by the way. No costume, no super powers. My costume usually consists of undone hair, whatever clothes are clean (and most likely have some issue or another), flip flops, or tennis shoes.
And yet I feel like I have a responsibility to fill that role, without even thinking about it. I've devoted this blog to the ultimate truth about life with a multiple special needs child. Most of my posts have been borderline depressing. C'mon. You were thinking the same thing. I can't change the truth peeps.
A friend called me stoic the other day. I was shocked. Not an adjective I would matched with myself. I cry. I BAWL. I lose it. I cry so hard I can't breathe. I get emotional. It happens when I least expect it. I equate it to being punched in the face a hundred times. Eventually, you get knocked out and fall to the ground. Sometimes, I'm so numb I can't breathe, much less cry. The crying comes a few minutes or hours later. People are programmed to respond to positivity. I've learned to spin some sort of positivity to spare the person the akwardness and to spare me wanting to rip them to shreds for not understanding. It's almost as if "AJ's doing so great!" is supposed to erase all the difficulties we are in the midst of right now. It doesn't. As much as I truly wish it did, it doesn't.
I have no idea how my brain comprehended the contents. Seriously. I saved the book because it was used my in favorite college course, Foundations of Education, and reminds me of my favorite professor. And, all my notes on the inside and back covers make me feel smart.
The first page I turned to boasted this note I had written in the margin:
"No one should display bad character in anything that they do"
Am I displaying poor or bad character as a special needs mom? Am I setting a bad example?
The title SuperMom was given without my consent. I do not remember signing a release allowing that title to be used in reference to me, myself, and I. I was not given a kick-ass costume when AJ was placed in my arms. No sequins, leather, or push-up anything. I don't need push-up anything, by the way. No costume, no super powers. My costume usually consists of undone hair, whatever clothes are clean (and most likely have some issue or another), flip flops, or tennis shoes.
And yet I feel like I have a responsibility to fill that role, without even thinking about it. I've devoted this blog to the ultimate truth about life with a multiple special needs child. Most of my posts have been borderline depressing. C'mon. You were thinking the same thing. I can't change the truth peeps.
So the question remains-am I displaying bad character?
Should I be putting on the smiley face for one and all?
A friend called me stoic the other day. I was shocked. Not an adjective I would matched with myself. I cry. I BAWL. I lose it. I cry so hard I can't breathe. I get emotional. It happens when I least expect it. I equate it to being punched in the face a hundred times. Eventually, you get knocked out and fall to the ground. Sometimes, I'm so numb I can't breathe, much less cry. The crying comes a few minutes or hours later. People are programmed to respond to positivity. I've learned to spin some sort of positivity to spare the person the akwardness and to spare me wanting to rip them to shreds for not understanding. It's almost as if "AJ's doing so great!" is supposed to erase all the difficulties we are in the midst of right now. It doesn't. As much as I truly wish it did, it doesn't.
So. Bad character?
Nah. Maybe I'm just a bad-ass Mama-Jama who speaks the truth. The whole truth.
Thursday, June 2, 2011
Thursday's 10
1. On a whim, I gave AJ apple wedges the other day. Not only did he eat them, he DEVOURED them. Talk about a huge feeding goal-CRUSHED. I'm not sure what type of apple they were (the apple dippers from McDonalds) but he loved them. They were a bit sour, but strong, so of course he loved them! We've since seen him devour granny smith apple wedges-YAY!
2. AJ had another round of botox in his left leg last week. We'll see. When we saw his CP doctor, I was delighted that he turned to her right away when she greeted him and made immediate eye contact. Considering she called him "socially akward" during our last appointment, I'd say that is progress.
3. We spent Memorial Day with Grandma & Grandpa in Iowa. We had a blast and even went to the waterpark!
4. I am not sure how, but in an effort to make our lives less stressful we've somehow managed to make it more stressful. How does that work?
5. How in the world is it June? I'm not kidding. AJ has less than a week of school left. I'm doing a little panic dance, not sure how I'm going to keep AJ stimulated over the summer. Despite having summer school, therapies, baseball, and hippotherapy on the docket, I'm still super nervous he's going to regress. After all, this has been our result the past two summers.
6. I scored a brand new backpack for AJ for kindergarten next year...for $4. Plaid Cuteness. So excited.
7. Along with that excitement re: #6 is a whole lot of fear and uncertainty. I'm on the fence as to whether or not the fear and anxiety is all new people, new routine related or fear and anxiety over my son's cognitive delays and his inability to communicate. A multiple choice question in which the answer may very well be D: all of the above.
8. We are anxiously awaiting the arrival of our niece-little baby faces make everything sweeter.
9. Yesterday, our realtor walked us through that dream Victorian I've been salivating over since AJ began preschool. It was amazing. Completely impractical, out of our league, and in dire need of a huge renovation, but it was beautiful to walk through. He brought a little sunshine to our morning.
10. Over the weekend, we unexpectedly lost our sweet, sweet Sunny. He was our yellow labrador/great dane mix and lived 10 full years. We boarded the dogs, which we haven't done in years. We received a call late Saturday night stating they suspected a case of bloat. What is bloat? We granted permission for Sunny to be taken to the emergency animal hospital. They confirmed it was bloat. We made the decision to have him put down. We are so thankful to the amazing staff at the boarding campus. They caught his symptoms right away, and stayed with him until he crossed the bridge to doggie heaven. They also made sure our other dog, Rocky, was loved and well taken care of until we returned from our vacation.
It was weird when I only had one dog in the car. Weird to have two dog beds with only one dog. Weird when I turned around to scold Sunny for being too anxious to clean up after AJ eats his breakfast...and he wasn't there. It is quiet. It is odd.
Rocky was super tired when we picked him up, which is no surprise since the dogs play outside 4-6 hours a day there. He seems fine, eating, playing, and back to the normal routine. What is freaky is how calm he is. He's always been the calmer of the two, and ah-hem the better trained dog since we got him as a pup, but WOW. He was feeding off of Sunny's hyperness. Yesterday we left him alone for the first time and he was just fine.
On Tuesday I picked up a clay disc with Sunny's pawprint pressed into it. Tears.
We miss you Sunny Dog...
2. AJ had another round of botox in his left leg last week. We'll see. When we saw his CP doctor, I was delighted that he turned to her right away when she greeted him and made immediate eye contact. Considering she called him "socially akward" during our last appointment, I'd say that is progress.
3. We spent Memorial Day with Grandma & Grandpa in Iowa. We had a blast and even went to the waterpark!
4. I am not sure how, but in an effort to make our lives less stressful we've somehow managed to make it more stressful. How does that work?
5. How in the world is it June? I'm not kidding. AJ has less than a week of school left. I'm doing a little panic dance, not sure how I'm going to keep AJ stimulated over the summer. Despite having summer school, therapies, baseball, and hippotherapy on the docket, I'm still super nervous he's going to regress. After all, this has been our result the past two summers.
6. I scored a brand new backpack for AJ for kindergarten next year...for $4. Plaid Cuteness. So excited.
7. Along with that excitement re: #6 is a whole lot of fear and uncertainty. I'm on the fence as to whether or not the fear and anxiety is all new people, new routine related or fear and anxiety over my son's cognitive delays and his inability to communicate. A multiple choice question in which the answer may very well be D: all of the above.
8. We are anxiously awaiting the arrival of our niece-little baby faces make everything sweeter.
9. Yesterday, our realtor walked us through that dream Victorian I've been salivating over since AJ began preschool. It was amazing. Completely impractical, out of our league, and in dire need of a huge renovation, but it was beautiful to walk through. He brought a little sunshine to our morning.
10. Over the weekend, we unexpectedly lost our sweet, sweet Sunny. He was our yellow labrador/great dane mix and lived 10 full years. We boarded the dogs, which we haven't done in years. We received a call late Saturday night stating they suspected a case of bloat. What is bloat? We granted permission for Sunny to be taken to the emergency animal hospital. They confirmed it was bloat. We made the decision to have him put down. We are so thankful to the amazing staff at the boarding campus. They caught his symptoms right away, and stayed with him until he crossed the bridge to doggie heaven. They also made sure our other dog, Rocky, was loved and well taken care of until we returned from our vacation.
It was weird when I only had one dog in the car. Weird to have two dog beds with only one dog. Weird when I turned around to scold Sunny for being too anxious to clean up after AJ eats his breakfast...and he wasn't there. It is quiet. It is odd.
Rocky was super tired when we picked him up, which is no surprise since the dogs play outside 4-6 hours a day there. He seems fine, eating, playing, and back to the normal routine. What is freaky is how calm he is. He's always been the calmer of the two, and ah-hem the better trained dog since we got him as a pup, but WOW. He was feeding off of Sunny's hyperness. Yesterday we left him alone for the first time and he was just fine.
On Tuesday I picked up a clay disc with Sunny's pawprint pressed into it. Tears.
We miss you Sunny Dog...
Sunday, May 22, 2011
Lavender Lab
During one of my weekly trips to Target, I spotted an endcap with some adorable animals on it. After browsing I found this:
His name is Lavender Lab. He has 100% lavender aromatherapy packets inside! The scent lasts for 5 years. Give a gentle squeeze and place him on your child's pillow during the day. To read more and find other cool stuffed animals (like the Sleep Sheep) click HERE.
The Easter Bunny brought this for AJ and he loves it. Because AJ's olfactory sense is so strong-translation-his sense of smell is amazing-I knew this would be great for him. The lavender scent helps calm and soothe him to sleep. Most of the time....
Friday, May 20, 2011
Where's your faith girlfriend?
I dunno.
If someone finds it, please let me know.
Yesterday AJ was denied physical therapy. Well, technically they approved 6 visits from now until November, stating it was follow-up to a home program. In English you say? This means his therapist is supposed to "check-in" with me and see what we're doing at home once a month.
Um, no. Total wrench in our plans for the summer. Remember how I mentioned AJ loves his pool therapy?
We're meeting today to discuss a plan. A plan that has very narrow options. Today is also a big day in terms of "will we have a place to live in a few months" and a sudden reminder of Jeremy's brain getting funky.
I grew up Lutheran, as did Jer, although we were in different synods. Mine was middle of the road with a bit more strictness than other churches of that synod, and Jer's was liberal. So much so that I was freaked out when I first attended his church when we were dating. This congregation greeted one and another, shook hands, and moved around the church. HORRORS. In my chuch, we barely turned around and said hello.
We married in Jer's church, which became our church. AJ was baptized there, but soon after we felt unwelcome. It was a period of uncertainty in our lives, just before AJ was diagnosed with anything, and we felt laser beam eyes stare at us as AJ cried and fused in the back pew of the church. As we moved to the cry room, we read a sign that said, "Please keep your children quiet, the glass is not soundproof." We realize now that we took the sign our of context, but it was enough to make us never return to that church.
We ignored the church idea for a long time, afraid of the indirect rejection happening. It is amazing how things change when you have a special needs child. Over a year ago we found a church closeby. After watching some sermons online, I found myself in tears. I sent an email to the pastor entitled "Lost Faith". In which I literally spilled our guts and asked pertinent questions that I had no answers for. His response was understanding, encouraging, and heart-warming.
We've attended the church a few times, and even though they have a buddy-program for children with disabilities, we still haven't taken AJ. Why? Too scared. Yep. We feel a connection when we attend, which is what is supposed to happen, but we still shy away from it.
Throughout our journey with AJ, I've heard things like: You are the best parents in the world. You are a saint. He is so blessed to have you as parents....my new favorite line to despise-you were his savior. Um, no. I know you are trying to make me feel good, but really it just pisses me off. I am human, just like you. I do not want to be put on a pedestal because guess what, pedestals fall. I'm confused as to God's plan in all of this. Some days I think it was meant to be, other days I'm completely at a loss.
What doesn't kill you makes you stronger. Well, I'm feeling like Pop-Eye already, and I don't really need to be any stronger. (And yes I like spinach) When is enough, enough? I realize that I have not experienced things such as genocide, the tsnuami in Japan, or homelessness. I realize there are people who are experiencing much, much worse.
But given all of that, we're still feeling how we're feeling. Who's bright idea was it to have my husband's brain go hay-wire when we've got our hands full with AJ? When is enough, enough? "God will never give you more than he and you can handle together." Well, we're not together. Perhaps that is a problem, perhaps not. All those quotes annoy me honestly. And don't try and push your faith on me because its your faith. Not mine. My faith has been shaken again and again. I know He's there, I just want to pick his brain. I know, I know. You shouldn't question the Master Planner. Well this planner wants to. Let's have coffee and hash this out.
Everytime we feel like things are turning around, something else happens. Oh I know, woe is me. Pity in the USA. But this is my blog, and if I want to share my absence of faith, I will. I was numb when his physical therapist called me yesterday. I gave her a line about remaining positive, but really? I wasn't. I was numb and at the end of my rope. I'm numb about Jeremy's MRI today. I'm just numb. I've lost the ability to hope, to hope for the best possible outcome. It has been along time since we've had the best possible outcome. Sure, the little things are natural highs-but we all know they never seem to last as long as the lows do.
Faith is a tricky thing.
If someone finds it, please let me know.
Yesterday AJ was denied physical therapy. Well, technically they approved 6 visits from now until November, stating it was follow-up to a home program. In English you say? This means his therapist is supposed to "check-in" with me and see what we're doing at home once a month.
Um, no. Total wrench in our plans for the summer. Remember how I mentioned AJ loves his pool therapy?
We're meeting today to discuss a plan. A plan that has very narrow options. Today is also a big day in terms of "will we have a place to live in a few months" and a sudden reminder of Jeremy's brain getting funky.
I grew up Lutheran, as did Jer, although we were in different synods. Mine was middle of the road with a bit more strictness than other churches of that synod, and Jer's was liberal. So much so that I was freaked out when I first attended his church when we were dating. This congregation greeted one and another, shook hands, and moved around the church. HORRORS. In my chuch, we barely turned around and said hello.
We married in Jer's church, which became our church. AJ was baptized there, but soon after we felt unwelcome. It was a period of uncertainty in our lives, just before AJ was diagnosed with anything, and we felt laser beam eyes stare at us as AJ cried and fused in the back pew of the church. As we moved to the cry room, we read a sign that said, "Please keep your children quiet, the glass is not soundproof." We realize now that we took the sign our of context, but it was enough to make us never return to that church.
We ignored the church idea for a long time, afraid of the indirect rejection happening. It is amazing how things change when you have a special needs child. Over a year ago we found a church closeby. After watching some sermons online, I found myself in tears. I sent an email to the pastor entitled "Lost Faith". In which I literally spilled our guts and asked pertinent questions that I had no answers for. His response was understanding, encouraging, and heart-warming.
We've attended the church a few times, and even though they have a buddy-program for children with disabilities, we still haven't taken AJ. Why? Too scared. Yep. We feel a connection when we attend, which is what is supposed to happen, but we still shy away from it.
Throughout our journey with AJ, I've heard things like: You are the best parents in the world. You are a saint. He is so blessed to have you as parents....my new favorite line to despise-you were his savior. Um, no. I know you are trying to make me feel good, but really it just pisses me off. I am human, just like you. I do not want to be put on a pedestal because guess what, pedestals fall. I'm confused as to God's plan in all of this. Some days I think it was meant to be, other days I'm completely at a loss.
What doesn't kill you makes you stronger. Well, I'm feeling like Pop-Eye already, and I don't really need to be any stronger. (And yes I like spinach) When is enough, enough? I realize that I have not experienced things such as genocide, the tsnuami in Japan, or homelessness. I realize there are people who are experiencing much, much worse.
But given all of that, we're still feeling how we're feeling. Who's bright idea was it to have my husband's brain go hay-wire when we've got our hands full with AJ? When is enough, enough? "God will never give you more than he and you can handle together." Well, we're not together. Perhaps that is a problem, perhaps not. All those quotes annoy me honestly. And don't try and push your faith on me because its your faith. Not mine. My faith has been shaken again and again. I know He's there, I just want to pick his brain. I know, I know. You shouldn't question the Master Planner. Well this planner wants to. Let's have coffee and hash this out.
Everytime we feel like things are turning around, something else happens. Oh I know, woe is me. Pity in the USA. But this is my blog, and if I want to share my absence of faith, I will. I was numb when his physical therapist called me yesterday. I gave her a line about remaining positive, but really? I wasn't. I was numb and at the end of my rope. I'm numb about Jeremy's MRI today. I'm just numb. I've lost the ability to hope, to hope for the best possible outcome. It has been along time since we've had the best possible outcome. Sure, the little things are natural highs-but we all know they never seem to last as long as the lows do.
Faith is a tricky thing.
Thursday, May 19, 2011
Thursday's 10
1. AJ's IEP earlier this week went well. 15 people: 2 hours. In short: AJ will be in full-day kindergarten next year. He will keep his 1:1 and we'll be adding special education to his education plan. A handful of the people at the IEP are going to pow-wow and figure out what his day will look like. After that, I'll meet with them and we'll make changes, if needed. He qualified for ESY (Extended School Year AKA summer school) so he'll have 40 minute sessions 3x week.
2. Per #1, I have the sudden urge to go and purchase school supplies. Seriously, I can smell them. The smell of new notebooks, crayons, and pencils excites me. I'm positive the supply list for kindergarten is longer than it is for preschool. HOORAY!
3. AJ put his coil back on his own head yesterday! It was a random thing that I happened to witness. Total awesomeness.
4. We're seeing a HUGE decrease in ripping off the whole kit and kaboodle AKA cochlear implants and glasses. HUGE. In fact, I cannot remember the last time he went to pull the whole thing off.
5. AJ brought me a spoon and a Frosty the other day. He had gone in the drawer, grabbed the spoon (which is not new), grabbed the Frosty off the table, and brought it to me in the living room. When I asked what he wanted, he signed "open". For him to put these two ideas together, pardon me, three ideas (I want to eat the frosty, I need a spoon to eat the frosty, I need an adult to help open/access the Frosty) is HUGE.
6. AJ is officially signed up for his challenger baseball league and hippotherapy (horse-riding therapy) over the summer.
7. AJ had an evaluation with the SLP Guru who is the co-founder of the intensive therapy program he attended last fall. She was very impressed with his progress! She observed AJ eating with his own SLP, and we talked about his trunk, balance, sensory needs...we talked about it all. She is amazing, and I am so thankful we get to check in with her at least once a year.
8. AJ is doing a much better job of waiting for his food. Last night, when he was clinging to my legs as I was trying to move around the kitchen, I told him to go sit in his chair, and pointed in the direction of our kitchen table. He walked across the kitchen, into the dining room, and climbed in his chair. Hello Receptive Communiation. Oh how I love you.
9. I made Pillsbury brownies the other day. Yep, right out of the box. They were DELICIOUS. They tasted just like homemade. I won't be buying those again anytime soon though. Between hy hubby, his brother, and myself, they disappeared very quickly.
10. AJ was denied speech therapy through his state insurance. Currently his primary is Jeremy's insurance and the state serves as a secondary. He is getting to an age/stage in his therapy career that getting services will be an increased challenge. Part of the challenge being that he is doing so well. For now, AJ's primary is paying for speech 1x week. Well, he's seen twice a week. Once for feeding, once for speech while he's in the pool. I'm not giving up speech in the pool. Sorry peeps. It looks like we'll be covered for one visit, and we'll be paying for the 2nd session per week ourselves. All in all, AJ's had 4 1/2 years of therapy, with, quite honestly, only minor hiccups. We have to be thankful for that.
2. Per #1, I have the sudden urge to go and purchase school supplies. Seriously, I can smell them. The smell of new notebooks, crayons, and pencils excites me. I'm positive the supply list for kindergarten is longer than it is for preschool. HOORAY!
3. AJ put his coil back on his own head yesterday! It was a random thing that I happened to witness. Total awesomeness.
4. We're seeing a HUGE decrease in ripping off the whole kit and kaboodle AKA cochlear implants and glasses. HUGE. In fact, I cannot remember the last time he went to pull the whole thing off.
5. AJ brought me a spoon and a Frosty the other day. He had gone in the drawer, grabbed the spoon (which is not new), grabbed the Frosty off the table, and brought it to me in the living room. When I asked what he wanted, he signed "open". For him to put these two ideas together, pardon me, three ideas (I want to eat the frosty, I need a spoon to eat the frosty, I need an adult to help open/access the Frosty) is HUGE.
6. AJ is officially signed up for his challenger baseball league and hippotherapy (horse-riding therapy) over the summer.
7. AJ had an evaluation with the SLP Guru who is the co-founder of the intensive therapy program he attended last fall. She was very impressed with his progress! She observed AJ eating with his own SLP, and we talked about his trunk, balance, sensory needs...we talked about it all. She is amazing, and I am so thankful we get to check in with her at least once a year.
8. AJ is doing a much better job of waiting for his food. Last night, when he was clinging to my legs as I was trying to move around the kitchen, I told him to go sit in his chair, and pointed in the direction of our kitchen table. He walked across the kitchen, into the dining room, and climbed in his chair. Hello Receptive Communiation. Oh how I love you.
9. I made Pillsbury brownies the other day. Yep, right out of the box. They were DELICIOUS. They tasted just like homemade. I won't be buying those again anytime soon though. Between hy hubby, his brother, and myself, they disappeared very quickly.
10. AJ was denied speech therapy through his state insurance. Currently his primary is Jeremy's insurance and the state serves as a secondary. He is getting to an age/stage in his therapy career that getting services will be an increased challenge. Part of the challenge being that he is doing so well. For now, AJ's primary is paying for speech 1x week. Well, he's seen twice a week. Once for feeding, once for speech while he's in the pool. I'm not giving up speech in the pool. Sorry peeps. It looks like we'll be covered for one visit, and we'll be paying for the 2nd session per week ourselves. All in all, AJ's had 4 1/2 years of therapy, with, quite honestly, only minor hiccups. We have to be thankful for that.
Sunday, May 15, 2011
Sunday Sermon
Last night was the first night I've really slept in over a week. Stress and uncertainty do not allow restful sleep. At least for me they don't. I'm sure you won't be surprised when I say a lot is going on right now.
1. AJ has been growing at a merely INSANE rate. He's fitting into 4T (one pair was even a 5T with the waist rolled!) pajamas, 3-4T shirts and 3T pants. This is crazy. He has never, ever it into clothes that were the same size as his age. Just last summer he was wearing 18 month shorts! I'm trimming his fingernails at least once a week. His sleep patterns are a bit off, with lots of napping. While this is a GREAT thing, it is also a novel thing. We are not used to him growing like this. It's a whole new experience for Mom and Dad.
2. With the growing, comes the tighteness, rigidity, and spasticity of his cerebral palsy. Grr. Despite some rough days, and some really rough days of walking, he has not stopped walking. We only had one day of tylenol for the pain, which is good. When he tightens, we increase massaging his legs and entire body, we put him on the treadmill, a lot, we take him to the park to climb (and naturally stretch his muscles), he wears his TENS unit, and we pray. A lot. For some reason when you are in the middle of the tighteness, you feel like its never going to go away.
3. I lost one of AJ's tennis shoes, with his $600 orthotic inside of it, the other day. Can we say, panic mode?! Jeremy found it hiding behind one of AJ's curtains (they are thick and reach the floor). WHEW. Of course, he is growing so fast, I've noticed he's just about at the point where the orthotics are too small.
4. AJ had an appt with his orthopedic surgeon two weeks ago. He was thrilled with how AJ looks. I do believe he even said the word impressed. Best news I'v heard in a long time. Follow-up is scheduled for 8 months. I love it when they increase the time between follow-ups.
5. AJ has been enjoying his pool therapy. Let me rephrase-totally loving his pool therapy! He receives PT and Speech together in the pool. Yes, my child with a cochlear implant has speech in the pool-while he can't hear. Makes sense right? We are jumping on the bandwagon and going to use the aloksak bag method of allowing him to hear in the pool, wearing one of his implants. In short: you put one implant in a waterproof bag, place the coil on his head, cover with a swim cap. He absolutely loves the water and this child has NO FEAR. Scary for Mom, tons of fun for AJ. You know, the usual heart attacks boys give their mothers....
His body immediately loosens when he hits the water. It is so amazing. Since AJ already thinks he's a porpoise, it would be great if he could just live in the water. They work on things like rotation (it is very hard for him to rotate his body to the left), strengthening...they do it all. I often have a hard time as his therapists call his name, and he doesn't respond. Aloksak bag, here we come!
6. A few weeks ago AJ's PT and I had a chance to chat during his pool therapy (her student was treating AJ while we were chatting). The words baclofen pump came out of her mouth. My reaction was typical, asking factual questions and becoming very quiet, very quickly. As we were leaving, a young mother with three completely normal children kept staring at us. AJ was extremely upset he was done swimming, and continued his pathetic and LOUD wailing in the locker room. As she left, she gawked one last time and I asked her if I could help her with something. She backpedaled-stuttering "No" as she walked around the corner. As we left the building, AJ continued to wail and I could not walk/run fast enough. It is amazing how awful a complete stranger can make you feel. I already frustrated because he was wailing, then for people to take notice and give you that "Whats wrong with your kid?" look, I just lost it. The emotional erruption regarding the baclofen pump happened once I hit the car and was hidden from public.
A baclofen pump is a round pump, the size of a hockey puck, that is placed under the abdominal wall. A catheter is fed (inside his body) from the pump around to his spine, to administer the medication, which would decrease his spasticity. The continuous medication tends to work better than say an oral dose. I relate it to insulin shots vs. an insulin pump. AJ already has tibia torsion and the concern is now with his increased growing, whether his femur will begin to grow incorrectly due to his muscles being tight and turning it in. Femur issues could lead to hips issues....are you overwhelmed yet? I am too. You can check out the pump HERE. Ironically, the baclofen pump is made by a company that also manufacture insulin pumps.
My mind would not allow me to process another surgery, much less something the size of a hockey puck protruding from my child's abdomen. My very small child's abdomen. I complete shut down, which is why there was no "Hey, were getting a baclofen pump for AJ" post on this blog. Since the original conversation, I agreed to a meeting with his physical medicine doctor and his physical therapist together to discussion the pump at length. Although (and I just have to add this), his physical medicine doctor's first reaction was that his sensory system can't handle it right now. I'm not going to lie, that was my first thought too. Whew. We'll see what happens.
7. When Jeremy finished school, I decided I wanted to look into going back and earning my Bachelors. What started as a call, purely for general information, led to my enrollment and my first class beginning the day after Jer's ended. Ok! I am pursuing my Bachelor of Arts-English through the University of Phoenix online. AKA I wanna be a writer. It was, dare I say, easy until two weeks ago. This past week I found myself angry and bawling at 2:30am finishing a paper. What was I thinking?! I'll keep plodding away, and keep reminding myself that a new class begins in two weeks.
8. As you may remember, we applied for Family Support Program funding and this year, we qualified. A very long story short, all of AJ 's items were approved including......an iPad 2! We are so excited!!! I will write more in another post.
9. A few months ago we had a parent-teacher conference for AJ which left us with the options for AJ for the next school year. Another year of preschool (this would be his 3rd year) or kindergarten. We, honestly, hadn't thought of kindergarten as an option-yet. Alas it is. I had a meeting with AJ's awesome teachers late last week and we pow-wowed about AJ's options. It was a great meeting and I think we are all leaning toward the same option.
10. Why did we meet? Because AJ's IEP is tomorrow. This is the first time, EVER, that only his school staff will be present. Which knocks our number of people at the meeting to 14 (or around there). Well actually, I think that might be the same, since we are taking away outside and have added school staff. Oh well, you get my point. Because AJ's cognitive delay is, uh-hum, is what it is, we are doing a re-evaluation at this IEP, and pulling in special education as well as the school psychologist. Fun times. I don't think Super Mom's are supposed to have vodka in their coffee mugs, but I'm seriously thinking about it.
11. Our house has been listed for 5 1/2 months. When did that happen? Seriously. We'll be closing on this house between mid-June and mid-August; due a unique situation that is our saving grace at the moment. However, with a few small trips planned, and our realtor getting married in another country, we got the ball rolling on finding a new house. Insert: mega stress. This process, of course, in true Heidi & Jeremy fashion, has gone all wrong. With having one city to choose from, two huge dogs, and other issues, we're rather limited. Without boring you, lets just say we've found a house, we hope to offer on it next week, and pray in the meantime no one else sees it or likes it. Because it is our only option at this point. I have seen more mold, mildew, crooked basements, wet basements, and nastiness to last me a life time. I have cried more tears of uncertainty than I swear I did when AJ was diagnosed with all of his whoo-ha. We had high hopes and excitement for house-hunting. This was our first experience, and it failed miserably. I feel like screaming, "Could something just go right?!" We're keeping our fingers crossed.
12. AJ begins his challenger baseball league in early June. It is 5 Saturdays. AJ also begins his hippotherapy (horse-riding therapy) in early June. Dad's excited for the baseball, I'm excited for the horse therapy. During his IEP tomorrow we will be discussing AJ's eligibility for ESY (Extended School Year) for the summer. Clearly, he qualifies, but we'll discusss how many days and the duration. He was also continue all of his private therapies over the summer.
13. AJ ate a regular peanut butter and jelly sandwich-without the bread toasted-last week. This is monumental. He's over the toddler forks and spoons, so I'm off to the thrift shop today to see if I can find some salad forks. Regular forks are a bit too big but the salad size are just perfect for him. He's doing a phenomenal job in feeding therapy.
14. On Friday AJ had another evaluation with the SLP Guru. She was impressed with his progress since she saw him last. Lots of things are going to change. He's growing up, and its so fabulous to see him make so many gains. It truly makes me a proud Mom. And, truth be told, added more fuel to the fire that gives me the energy to keep doing all of this. I was just about on empty. Hooray for AJ!
1. AJ has been growing at a merely INSANE rate. He's fitting into 4T (one pair was even a 5T with the waist rolled!) pajamas, 3-4T shirts and 3T pants. This is crazy. He has never, ever it into clothes that were the same size as his age. Just last summer he was wearing 18 month shorts! I'm trimming his fingernails at least once a week. His sleep patterns are a bit off, with lots of napping. While this is a GREAT thing, it is also a novel thing. We are not used to him growing like this. It's a whole new experience for Mom and Dad.
2. With the growing, comes the tighteness, rigidity, and spasticity of his cerebral palsy. Grr. Despite some rough days, and some really rough days of walking, he has not stopped walking. We only had one day of tylenol for the pain, which is good. When he tightens, we increase massaging his legs and entire body, we put him on the treadmill, a lot, we take him to the park to climb (and naturally stretch his muscles), he wears his TENS unit, and we pray. A lot. For some reason when you are in the middle of the tighteness, you feel like its never going to go away.
3. I lost one of AJ's tennis shoes, with his $600 orthotic inside of it, the other day. Can we say, panic mode?! Jeremy found it hiding behind one of AJ's curtains (they are thick and reach the floor). WHEW. Of course, he is growing so fast, I've noticed he's just about at the point where the orthotics are too small.
4. AJ had an appt with his orthopedic surgeon two weeks ago. He was thrilled with how AJ looks. I do believe he even said the word impressed. Best news I'v heard in a long time. Follow-up is scheduled for 8 months. I love it when they increase the time between follow-ups.
5. AJ has been enjoying his pool therapy. Let me rephrase-totally loving his pool therapy! He receives PT and Speech together in the pool. Yes, my child with a cochlear implant has speech in the pool-while he can't hear. Makes sense right? We are jumping on the bandwagon and going to use the aloksak bag method of allowing him to hear in the pool, wearing one of his implants. In short: you put one implant in a waterproof bag, place the coil on his head, cover with a swim cap. He absolutely loves the water and this child has NO FEAR. Scary for Mom, tons of fun for AJ. You know, the usual heart attacks boys give their mothers....
His body immediately loosens when he hits the water. It is so amazing. Since AJ already thinks he's a porpoise, it would be great if he could just live in the water. They work on things like rotation (it is very hard for him to rotate his body to the left), strengthening...they do it all. I often have a hard time as his therapists call his name, and he doesn't respond. Aloksak bag, here we come!
6. A few weeks ago AJ's PT and I had a chance to chat during his pool therapy (her student was treating AJ while we were chatting). The words baclofen pump came out of her mouth. My reaction was typical, asking factual questions and becoming very quiet, very quickly. As we were leaving, a young mother with three completely normal children kept staring at us. AJ was extremely upset he was done swimming, and continued his pathetic and LOUD wailing in the locker room. As she left, she gawked one last time and I asked her if I could help her with something. She backpedaled-stuttering "No" as she walked around the corner. As we left the building, AJ continued to wail and I could not walk/run fast enough. It is amazing how awful a complete stranger can make you feel. I already frustrated because he was wailing, then for people to take notice and give you that "Whats wrong with your kid?" look, I just lost it. The emotional erruption regarding the baclofen pump happened once I hit the car and was hidden from public.
A baclofen pump is a round pump, the size of a hockey puck, that is placed under the abdominal wall. A catheter is fed (inside his body) from the pump around to his spine, to administer the medication, which would decrease his spasticity. The continuous medication tends to work better than say an oral dose. I relate it to insulin shots vs. an insulin pump. AJ already has tibia torsion and the concern is now with his increased growing, whether his femur will begin to grow incorrectly due to his muscles being tight and turning it in. Femur issues could lead to hips issues....are you overwhelmed yet? I am too. You can check out the pump HERE. Ironically, the baclofen pump is made by a company that also manufacture insulin pumps.
My mind would not allow me to process another surgery, much less something the size of a hockey puck protruding from my child's abdomen. My very small child's abdomen. I complete shut down, which is why there was no "Hey, were getting a baclofen pump for AJ" post on this blog. Since the original conversation, I agreed to a meeting with his physical medicine doctor and his physical therapist together to discussion the pump at length. Although (and I just have to add this), his physical medicine doctor's first reaction was that his sensory system can't handle it right now. I'm not going to lie, that was my first thought too. Whew. We'll see what happens.
7. When Jeremy finished school, I decided I wanted to look into going back and earning my Bachelors. What started as a call, purely for general information, led to my enrollment and my first class beginning the day after Jer's ended. Ok! I am pursuing my Bachelor of Arts-English through the University of Phoenix online. AKA I wanna be a writer. It was, dare I say, easy until two weeks ago. This past week I found myself angry and bawling at 2:30am finishing a paper. What was I thinking?! I'll keep plodding away, and keep reminding myself that a new class begins in two weeks.
8. As you may remember, we applied for Family Support Program funding and this year, we qualified. A very long story short, all of AJ 's items were approved including......an iPad 2! We are so excited!!! I will write more in another post.
9. A few months ago we had a parent-teacher conference for AJ which left us with the options for AJ for the next school year. Another year of preschool (this would be his 3rd year) or kindergarten. We, honestly, hadn't thought of kindergarten as an option-yet. Alas it is. I had a meeting with AJ's awesome teachers late last week and we pow-wowed about AJ's options. It was a great meeting and I think we are all leaning toward the same option.
10. Why did we meet? Because AJ's IEP is tomorrow. This is the first time, EVER, that only his school staff will be present. Which knocks our number of people at the meeting to 14 (or around there). Well actually, I think that might be the same, since we are taking away outside and have added school staff. Oh well, you get my point. Because AJ's cognitive delay is, uh-hum, is what it is, we are doing a re-evaluation at this IEP, and pulling in special education as well as the school psychologist. Fun times. I don't think Super Mom's are supposed to have vodka in their coffee mugs, but I'm seriously thinking about it.
11. Our house has been listed for 5 1/2 months. When did that happen? Seriously. We'll be closing on this house between mid-June and mid-August; due a unique situation that is our saving grace at the moment. However, with a few small trips planned, and our realtor getting married in another country, we got the ball rolling on finding a new house. Insert: mega stress. This process, of course, in true Heidi & Jeremy fashion, has gone all wrong. With having one city to choose from, two huge dogs, and other issues, we're rather limited. Without boring you, lets just say we've found a house, we hope to offer on it next week, and pray in the meantime no one else sees it or likes it. Because it is our only option at this point. I have seen more mold, mildew, crooked basements, wet basements, and nastiness to last me a life time. I have cried more tears of uncertainty than I swear I did when AJ was diagnosed with all of his whoo-ha. We had high hopes and excitement for house-hunting. This was our first experience, and it failed miserably. I feel like screaming, "Could something just go right?!" We're keeping our fingers crossed.
12. AJ begins his challenger baseball league in early June. It is 5 Saturdays. AJ also begins his hippotherapy (horse-riding therapy) in early June. Dad's excited for the baseball, I'm excited for the horse therapy. During his IEP tomorrow we will be discussing AJ's eligibility for ESY (Extended School Year) for the summer. Clearly, he qualifies, but we'll discusss how many days and the duration. He was also continue all of his private therapies over the summer.
13. AJ ate a regular peanut butter and jelly sandwich-without the bread toasted-last week. This is monumental. He's over the toddler forks and spoons, so I'm off to the thrift shop today to see if I can find some salad forks. Regular forks are a bit too big but the salad size are just perfect for him. He's doing a phenomenal job in feeding therapy.
14. On Friday AJ had another evaluation with the SLP Guru. She was impressed with his progress since she saw him last. Lots of things are going to change. He's growing up, and its so fabulous to see him make so many gains. It truly makes me a proud Mom. And, truth be told, added more fuel to the fire that gives me the energy to keep doing all of this. I was just about on empty. Hooray for AJ!
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