Yesterday was hard. Physically and mentally. For starters, Baylee had her braces adjusted Wednesday night and her mouth has been killing her since. She didn't even want to go to school yesterday (which isn't like her at all) and then Carson had a dentist appointment for a cleaning and eval. I've known about the dentist appointment for 6 months so you would think that I would've been smarter about it and asked Mike to take off work and come with me. Dentist appointments are the WORST appointments when it comes to Carson. His SPD makes his mouth hypersensitive and it's not something that he tolerates well. Hell even just brushing his teeth is a task.
So I show up to his appointment and as I'm in the parking lot getting his stuff together my phone rings and it's the school telling me that Baylee is in the office and wants to go home. It's 10 am. They let me talk to her and I convinced her to just hang in there and I would bring her some Tylenol when Carson was finished. I'd already given her ibuprofen before she left the house. She agreed and I went inside.
Now I have to say that Carson's hygienist Rebecca is a SAINT when it comes to him. We have been taking him since he was about 3 and she has done all but 1 of his cleanings. Last time he screamed but really didn't fight too much. This time was insane. It took 3 of us just to hold him in the chair. He was on his back, reclined, and I was literally lying on top of him holding his wrists so he couldn't claw anyone. Two other girls had a leg each and poor Rebecca was trying to hold his head still and clean his teeth at the same time. None of us could hear the other over his screaming. And I'm not talking waaaaa screams. I'm talking AHHHH AHHHH AHHHHH terrified someone's trying to kill me screams. I swear people heard him a block away.
I wish I could say that with all of us it was easy. It wasn't. He was twisting and bucking and trying to get off that chair any way possible. His hand would get free and he would scratch my arm or my face. A couple times we had to re-position him back up to the top of the chair because he had worked us all down to the bottom.
Once she had polished his teeth we gave him a break before the dentist came in to see him. Usually we have to wait ten or so minutes while he is in with another patient. Poor Carson is just sobbing in my arms. He's all red and hot. We're all sweating and breathing hard. Everyone is making sure the other is okay since he was kicking and straining.
When the dentist came in Carson about climbed me to the ceiling. I got him back into the chair and we had to do it all over again. He counted Carson's teeth (out loud) and was trying to soothe him the best he could. Rebecca painted his teeth and then they were finished. I held Carson in my lap for just a few minutes before we left to go schedule. He likes leaving because they let him pick out 2 prizes and a sticker. He ALWAYS goes for the little plastic dinosaurs that he can chew on.
So we left, frazzled, with out next appointment in hand. Next time without a doubt Mike has to come with me. It's really hard to accept that I am just not big enough or strong enough to handle him on my own in situations like that anymore. He isn't even 6 yet. What happens when he's 12? What happens at home when he gets to a point where he doesn't want to listen to me anymore? Or I need to go to the grocery store and he's too big to fit in the cart (which will be in the next year for sure) and won't stay with me? Thinking about all the what if's makes my head hurt and my heart ache.
So I woke up this morning so sore, as if I'd just had the hardest work-out of my life sore, and depressed. Some days it's really hard to see the bright side of things. Then he comes to me with his iPad on Proloquo2go and writes "hungry. pizza rolls." I said sorry bud we don't have any. He writes "go." Go where? I asked. "Food. Pharmacy." (KROGER LOL) Then I'm reminded how smart this little booger is and why I love him so much.
XX
Saturday, September 20, 2014
Saturday, September 13, 2014
Home School
This past month has been so busy. School officially started for Carson on August 1 since his paperwork came to us late (but we unofficially started June 1). I'm doing many things with him when it comes to his education but the major part is coming from his iPad. He has a TON of apps which are all educational. He doesn't have one game on there that is just for fun. It makes me sound like a total stickler but trust me, it's how he likes it. I purchased a year's subscription for an app called Homer. It is an app that not only teaches letters and sounds but also has a mail system where you can send and receive virtual postcards from family members. He is getting really good at taking pictures to send. I like it because I can log on and see how much progress he has made. The only problem so far is that it allows up to 5 profiles and Carson has figured out how to make them. Right now he is playing under the name 'umbrella'.
I pretty much let him lead the way when it comes to what he is learning but I am also doing work-book pages with him to put in his portfolio to show the board at the end of the school year. It's really fun working with him. I have to admit that I am learning probably just as much as he is. Did you know that the first school bus was used in London, UK in 1827? It was horse-drawn and could hold up to 25 students.
He has watched tadpoles grow into tree frogs and has been learning about all sorts of musical instruments. His favorite today was a harmonica (which interestingly enough was one of the first words he ever spelled... when he was 2).
I am trying to take as many pictures as I can so show the things that he is working on since he doesn't really do that much actually ON paper. It is either on his iPad or on his white board. Some days it's like watching a scene from A Beautiful Mind or Limitless and the end result is this:
Carson had new tubes put in his ears on August 28. We go for a booth hearing test next week. Hopefully he is hearing better. We have noticed that he isn't writing things the correct way. He writes POT instead of POP and today he was listening to an Elmo song and during one part they say clap clap clap and he wrote nap nap nap so we know for sure he either isn't hearing it right or isn't processing it correctly.
Oh well. It's almost 2 am. I guess I should be off to bed. 7 am comes early.
XX
I pretty much let him lead the way when it comes to what he is learning but I am also doing work-book pages with him to put in his portfolio to show the board at the end of the school year. It's really fun working with him. I have to admit that I am learning probably just as much as he is. Did you know that the first school bus was used in London, UK in 1827? It was horse-drawn and could hold up to 25 students.
He has watched tadpoles grow into tree frogs and has been learning about all sorts of musical instruments. His favorite today was a harmonica (which interestingly enough was one of the first words he ever spelled... when he was 2).
I am trying to take as many pictures as I can so show the things that he is working on since he doesn't really do that much actually ON paper. It is either on his iPad or on his white board. Some days it's like watching a scene from A Beautiful Mind or Limitless and the end result is this:
We go in October for his annual appointment with his pediatrician. I am going to find out then what I need to do about therapies since we aren't doing any from school anymore. I am incorporating as much as I can in our day but I don't know if it is enough.Carson had new tubes put in his ears on August 28. We go for a booth hearing test next week. Hopefully he is hearing better. We have noticed that he isn't writing things the correct way. He writes POT instead of POP and today he was listening to an Elmo song and during one part they say clap clap clap and he wrote nap nap nap so we know for sure he either isn't hearing it right or isn't processing it correctly.
Oh well. It's almost 2 am. I guess I should be off to bed. 7 am comes early.
XX
Saturday, August 2, 2014
Words
Today Carson said I love you. He was lying on the floor in my bedroom and I was playing with his feet. I looked him in the eyes and said I love you. Without blinking he said, "I love you." It wasn't perfect but I understood the cadence and the letter sounds. Before I could even tell anyone Mike peeked his head around the corner from shaving in the bathroom and said, "Did he just say 'I love you'?" It was such a good feeling. I gave up on Carson talking a long time ago. A doctor in Seattle did a gene study on our kiddos and found that those who were missing a certain gene sequence never spoke or gained and lost words frequently. Carson is missing that sequence. He has said words before but then lost them. He used to say mama and dada. Sometimes it's almost like his little brain forgets that he can't speak and out of the blue he'll say something. Right now the only two words that he has kept are eat and yeah. Eat is more like EEEEEEEEEE but he signs eat at the same time so I know that's what he means. Yeah is drawn out and really cute, YEEEEAAAAAAAHHHHH.
I asked Carson this morning when he woke up if he could talk in his dreams. Yeeeaaaaahhhh he says to me. I swear it broke my heart. I can't imagine how frustrating it must be for him to have so many words jumbled up inside and only be able to write one or two words at a time. Even with Proloquo2go - a speaking app on his iPad- there are so many screens and options that it takes a while just to get out everything that he is thinking of. He usually just gives up and starts typing the letters out.
My mom got Carson an easel for Easter that has a chalk board on one side and a dry erase white board on the other. In the beginning we were letting him use the chalk side of the board and breaking the chalk into tiny pieces so that he would have to hold it correctly with his thumb and pointer finger they way we were taught in school last year. Unfortunately the chalk was very messy and left a dusty layer all over my living room furniture, carpet and even the walls. On top of that Carson's finger began to have a wound on the pad where his fingerprint is. I think it was a combination of the chalk being so drying to the skin plus he would use his finger to wipe off what he had written on the chalk board instead of the eraser we got him. Since he is diabetic and wounds heal very slowly and can become necrotic I had to take the chalk away and buy him the markers instead.
The things that he writes now are incredible. The other day he wrote Shop Vac then erased it and wrote NOT vacuum. It was so funny. He has an obsession with vacuums like you wouldn't believe. If we are in Target, we have to go by the vacuums and you can't just walk down the aisle. You have to go slow, let him read the brand of the vacuum and explain if it is for pet hair etc. The other side of that is that he is terrified of carpet cleaners. We have one in our house and if you so much as open the door to the closet it is in he will hide from you until he is sure that you aren't hiding it somewhere just to scare him with it. I think it has a lot to do with the pitch of the noise that comes from it since he can only hear to a certain decibel level. A carpet cleaner (or steam cleaner as we refer to it) is a stamooller to Carson. For the longest time he would write stamooller and I had absolutely no clue what he was talking about. Then I saw him on his ABC go app and it showed a steam roller so I announced to everyone with great enthusiasm that a stamooller is a steam roller!!! Boy was I wrong lol. Last week he wrote this: stamooller Bissel. Our steam cleaner is a Bissel. I got served HA! The new one he keeps writing that has me stumped is AIRFACE. It's not Facebook, Air Force or fire place. I have begged him to show me what AIRFACE is but so far he likes to keep me guessing.
A HUGE part of the progress we have made with Carson and his vocabulary has 100% come from his iPad and the apps that are available. I had to buy him a new one a few weeks ago because he cracked the screen on his and Best Buy will send it off and repair it and send it back to your house up to 10 days later. (In reality it took 2 days but I couldn't take the chance). The gentleman who helped me, Andy, had special needs. I can't say for sure what his specific diagnosis was but I would venture on something similar to cerebral palsy because he was very sharp mentally, it was his body that wasn't living up to him. He asked me why I specifically wanted an iPad and I explained that my son has special needs and all the apps I have are all Apple apps and so on. We started talking about how 10-15 years ago he had a friend who had a 'speaking machine' that had been built by Children's Hospital and the thing was enormous and was very VERY expensive. There wasn't anything close to what we can have access to today. Don't get me wrong, $300 for an iPad mini was a huge chunk of change out of our pockets, especially considering that we are living on one income now and Mike is in construction so he doesn't make that much money. But it's worth it if it means that Carson can learn new things each day and be able to express his wants and needs to me or to anyone for that matter.
I asked Carson this morning when he woke up if he could talk in his dreams. Yeeeaaaaahhhh he says to me. I swear it broke my heart. I can't imagine how frustrating it must be for him to have so many words jumbled up inside and only be able to write one or two words at a time. Even with Proloquo2go - a speaking app on his iPad- there are so many screens and options that it takes a while just to get out everything that he is thinking of. He usually just gives up and starts typing the letters out.
My mom got Carson an easel for Easter that has a chalk board on one side and a dry erase white board on the other. In the beginning we were letting him use the chalk side of the board and breaking the chalk into tiny pieces so that he would have to hold it correctly with his thumb and pointer finger they way we were taught in school last year. Unfortunately the chalk was very messy and left a dusty layer all over my living room furniture, carpet and even the walls. On top of that Carson's finger began to have a wound on the pad where his fingerprint is. I think it was a combination of the chalk being so drying to the skin plus he would use his finger to wipe off what he had written on the chalk board instead of the eraser we got him. Since he is diabetic and wounds heal very slowly and can become necrotic I had to take the chalk away and buy him the markers instead.
The things that he writes now are incredible. The other day he wrote Shop Vac then erased it and wrote NOT vacuum. It was so funny. He has an obsession with vacuums like you wouldn't believe. If we are in Target, we have to go by the vacuums and you can't just walk down the aisle. You have to go slow, let him read the brand of the vacuum and explain if it is for pet hair etc. The other side of that is that he is terrified of carpet cleaners. We have one in our house and if you so much as open the door to the closet it is in he will hide from you until he is sure that you aren't hiding it somewhere just to scare him with it. I think it has a lot to do with the pitch of the noise that comes from it since he can only hear to a certain decibel level. A carpet cleaner (or steam cleaner as we refer to it) is a stamooller to Carson. For the longest time he would write stamooller and I had absolutely no clue what he was talking about. Then I saw him on his ABC go app and it showed a steam roller so I announced to everyone with great enthusiasm that a stamooller is a steam roller!!! Boy was I wrong lol. Last week he wrote this: stamooller Bissel. Our steam cleaner is a Bissel. I got served HA! The new one he keeps writing that has me stumped is AIRFACE. It's not Facebook, Air Force or fire place. I have begged him to show me what AIRFACE is but so far he likes to keep me guessing.
A HUGE part of the progress we have made with Carson and his vocabulary has 100% come from his iPad and the apps that are available. I had to buy him a new one a few weeks ago because he cracked the screen on his and Best Buy will send it off and repair it and send it back to your house up to 10 days later. (In reality it took 2 days but I couldn't take the chance). The gentleman who helped me, Andy, had special needs. I can't say for sure what his specific diagnosis was but I would venture on something similar to cerebral palsy because he was very sharp mentally, it was his body that wasn't living up to him. He asked me why I specifically wanted an iPad and I explained that my son has special needs and all the apps I have are all Apple apps and so on. We started talking about how 10-15 years ago he had a friend who had a 'speaking machine' that had been built by Children's Hospital and the thing was enormous and was very VERY expensive. There wasn't anything close to what we can have access to today. Don't get me wrong, $300 for an iPad mini was a huge chunk of change out of our pockets, especially considering that we are living on one income now and Mike is in construction so he doesn't make that much money. But it's worth it if it means that Carson can learn new things each day and be able to express his wants and needs to me or to anyone for that matter.
Friday, August 1, 2014
Insomnia
One of my unfortunate side effects to Carson's diabetes has to be my insomnia. I figured out very early on that if I had to check his blood sugar, say, 2 hours after he went to bed and I went to bed to sleep for those 2 hours I would either not hear my alarm or turn it off in my sleep. It didn't matter if it was right next to my head or across the room. So I went from trying to get some sleep here and there to sometimes having to stay up until 1 or 2 in the morning. The bad part about that is that Miss B is typically an early riser. Up until very recently she was up at 7 am on the nose every day well into July. So I have been looking at roughly 5 hours of sleep a night. Then when it's time for Carson to go to bed I'm bone tired but again have to stay up to check his blood sugar but when I CAN go to sleep I've missed that window and I have to wait to be tired again. It's a never-ending battle.
Then there are nights like tonight where I don't have to check him because his last insulin was administered at 7:30 so he was checked again at 10:30 and he was in the range where I don't have to give him more insulin for a correction so I'm up right now at 12:20 am for no reason other than I can't sleep. I have been making the most of my quiet time when everyone else is in bed by working on my things for craft shows that start up here in about a month so it's not completely wasted time...it's just tired time.
Something else I don't think I've mentioned is the fact that I no longer sleep with Mike in our bed. I haven't since about January. For one, the bed is too comfy ( a sleep number bed) and again that's when I don't hear my alarm going off. Secondly, I was literally pushed out of bed. Our 160 lb Great Dane has now become the proud occupant to my side of the bed. I simply got tired of fighting for space. I probably shouldn't have given up so easily but with all the other shit I have to deal with on a daily basis fighting for a bed was the last thing I wanted to do.
My mom has repeatedly told me that I should make her get down and that's that. Easier said than done. She's smart enough to wait until you're good and asleep and then she'll slither in. You don't even feel her. Then you're waking up in the morning with your knees in your chin curled up into a ball because you just automatically move in your sleep to accommodate the other beings in your bed, dogs or otherwise. (If you're a mom you'll understand that 100%). So then shut the door she tells me. That can't be done. Carson will wake up in the middle of the night and come find me. Happens every night. He would seriously walk right into the door so that's a no-go. So, I gave up.
I now spend my nights with my little C-Man. I got him a full sized bed a while ago and he doesn't seem to mind to share. Aside from the comfort level I don't even miss my bed. I think the next step will be to get a pull-out bed and sleep in the living room because as Carson gets bigger and he needs the bed space for himself. Our dog is turning 2 so potentially she can live for another 10-12 years so who knows how long this will last. I keep joking with Mike that I'm going to turn my craft room in the basement into my bedroom. The sad thing is deep down I don't think I'm joking. I've even looked at paint colors and thought about furniture placement. Maybe that's just me dreaming of a little place where I can go to just unwind since it's been so long since I've had any time to myself. Now that I literally have no one to watch both kids for me there's been little time for me. Mike has watched the kids while I've gone to the grocery store but that's hardly a vacation.
Oh well. Off to bed to see if maybe I can fall asleep. Tomorrow is Saturday and Mike is off work so maybe I'll get lucky and be able to sleep until 8. Fingers crossed.
XX
Then there are nights like tonight where I don't have to check him because his last insulin was administered at 7:30 so he was checked again at 10:30 and he was in the range where I don't have to give him more insulin for a correction so I'm up right now at 12:20 am for no reason other than I can't sleep. I have been making the most of my quiet time when everyone else is in bed by working on my things for craft shows that start up here in about a month so it's not completely wasted time...it's just tired time.
Something else I don't think I've mentioned is the fact that I no longer sleep with Mike in our bed. I haven't since about January. For one, the bed is too comfy ( a sleep number bed) and again that's when I don't hear my alarm going off. Secondly, I was literally pushed out of bed. Our 160 lb Great Dane has now become the proud occupant to my side of the bed. I simply got tired of fighting for space. I probably shouldn't have given up so easily but with all the other shit I have to deal with on a daily basis fighting for a bed was the last thing I wanted to do.
My mom has repeatedly told me that I should make her get down and that's that. Easier said than done. She's smart enough to wait until you're good and asleep and then she'll slither in. You don't even feel her. Then you're waking up in the morning with your knees in your chin curled up into a ball because you just automatically move in your sleep to accommodate the other beings in your bed, dogs or otherwise. (If you're a mom you'll understand that 100%). So then shut the door she tells me. That can't be done. Carson will wake up in the middle of the night and come find me. Happens every night. He would seriously walk right into the door so that's a no-go. So, I gave up.
I now spend my nights with my little C-Man. I got him a full sized bed a while ago and he doesn't seem to mind to share. Aside from the comfort level I don't even miss my bed. I think the next step will be to get a pull-out bed and sleep in the living room because as Carson gets bigger and he needs the bed space for himself. Our dog is turning 2 so potentially she can live for another 10-12 years so who knows how long this will last. I keep joking with Mike that I'm going to turn my craft room in the basement into my bedroom. The sad thing is deep down I don't think I'm joking. I've even looked at paint colors and thought about furniture placement. Maybe that's just me dreaming of a little place where I can go to just unwind since it's been so long since I've had any time to myself. Now that I literally have no one to watch both kids for me there's been little time for me. Mike has watched the kids while I've gone to the grocery store but that's hardly a vacation.
Oh well. Off to bed to see if maybe I can fall asleep. Tomorrow is Saturday and Mike is off work so maybe I'll get lucky and be able to sleep until 8. Fingers crossed.
XX
Thursday, July 31, 2014
Balance
One of the hardest things with having more than one child when one of them has special needs is trying to find a balance between them. There have been so many things that Baylee has had to sacrifice because of her brother. It may be something simple like going for a walk or bike ride, to going to the park, a party, an amusement park etc. I don't necessarily think she resents him for preventing us from going and doing all the time but I know that she is a 9-year-old little girl who just wants to have fun, especially since this is her first 'real' summer at home since I am not working anymore and she doesn't have to go to a babysitter early in the morning. It actually took her a while just to learn how to sleep in.
This year I decided to make a summer bucket list for us to complete. 50 items. Some of them were simple like camp in the back yard (for her and her dad), see a rainbow (finally completed 2 days ago!) and build a fort. Some are pay-it-forward like donating to our local Ronald McDonald House and to Cincinnati Children's Hospital Medical Center's Child Life department because they have done so much to help Carson. And lastly, completely indulgent like a DQ Blizzard, soft-serve ice cream, making Icees and baking bread. Most of these are free or as close to free as I could get. As of today we have completed 38 items. Many of the things on the list are things that really only 3 of us can appreciate but we always try to have Carson with us when we do them so we are doing them as a family. I can tell you it makes me so happy to see Baylee happy and doing fun things instead of just sitting around the house on her iPad all day.
Most of this summer has been much colder than normal. Monday of this week the high was about 68 I went to the grocery store in jeans! It's the end of July in Ohio! That's insane. Usually by now it's 105, we are sweating our asses off and just begging Mother Nature for a breeze. That has hampered some of our bucket list items such as having a water fight, swimming at night and going to a water park. Maybe before school is back in we will be able to warm up enough for maybe even one of these things. If not, I may take matters into my own hands and white out those on the list and add new things...
Tomorrow is Carson's first day of home-school Kindergarten. He'll probably be studying astrophysics lol.
XX
Summer Bucket List:
1. Camp in the back yard
2. Go to King's Island
3. Go to The Cincinnati Museum Center
4. Make tie-dyed clothing
5. Make home-made Icees
6. Go to the Newport Aquarium
7. Go to the movies
8. Make rock candy
9. Go to a farmer's market
10. Watch fireworks
11. Go to the Cincinnati Zoo
12. Play at a playground
13. Go geocaching
14. Have a picnic
15. Go for a bike ride
16. Make homemade pretzels
17. Go to a waterpark
18. Go swimming
19. Go swimming at night
20. Go to the mall
21. Disney movie day
22. Play in the rain
23. Make a pet rock
24. Make a photo booth picture
25. Go to Jungle Jim's
26. Go to Recreations Outlet
27. Play putt-putt
28 Go to Kings Island at night
29. Make jewelry
30. Watch tadpoles grow into frogs
31. Summer reading program at the library
32. Feed ducks
33. Plant a tree
34. See farm animals
35. Go to Ikea
36. Catch lightning bugs
37. Donate to Ronald McDonald House
38. Donate to CCHMC child life
39. Have soft serve ice cream
40. Build a fort
41. Have a water fight
42. Have a UDF malt
43. Barnes and Noble summer reading club
44. See a rainbow
45. Pet a turtle
46. Have a Dairy Queen Blizzard
47. Milkshake from Rally's
48. Make a clay whistle at the library
49. Have dinner on the deck
50. Have a baking day
This year I decided to make a summer bucket list for us to complete. 50 items. Some of them were simple like camp in the back yard (for her and her dad), see a rainbow (finally completed 2 days ago!) and build a fort. Some are pay-it-forward like donating to our local Ronald McDonald House and to Cincinnati Children's Hospital Medical Center's Child Life department because they have done so much to help Carson. And lastly, completely indulgent like a DQ Blizzard, soft-serve ice cream, making Icees and baking bread. Most of these are free or as close to free as I could get. As of today we have completed 38 items. Many of the things on the list are things that really only 3 of us can appreciate but we always try to have Carson with us when we do them so we are doing them as a family. I can tell you it makes me so happy to see Baylee happy and doing fun things instead of just sitting around the house on her iPad all day.
Most of this summer has been much colder than normal. Monday of this week the high was about 68 I went to the grocery store in jeans! It's the end of July in Ohio! That's insane. Usually by now it's 105, we are sweating our asses off and just begging Mother Nature for a breeze. That has hampered some of our bucket list items such as having a water fight, swimming at night and going to a water park. Maybe before school is back in we will be able to warm up enough for maybe even one of these things. If not, I may take matters into my own hands and white out those on the list and add new things...
Tomorrow is Carson's first day of home-school Kindergarten. He'll probably be studying astrophysics lol.
XX
Summer Bucket List:
1. Camp in the back yard
2. Go to King's Island
3. Go to The Cincinnati Museum Center
4. Make tie-dyed clothing
5. Make home-made Icees
6. Go to the Newport Aquarium
7. Go to the movies
8. Make rock candy
9. Go to a farmer's market
10. Watch fireworks
11. Go to the Cincinnati Zoo
12. Play at a playground
13. Go geocaching
14. Have a picnic
15. Go for a bike ride
16. Make homemade pretzels
17. Go to a waterpark
18. Go swimming
19. Go swimming at night
20. Go to the mall
21. Disney movie day
22. Play in the rain
23. Make a pet rock
24. Make a photo booth picture
25. Go to Jungle Jim's
26. Go to Recreations Outlet
27. Play putt-putt
28 Go to Kings Island at night
29. Make jewelry
30. Watch tadpoles grow into frogs
31. Summer reading program at the library
32. Feed ducks
33. Plant a tree
34. See farm animals
35. Go to Ikea
36. Catch lightning bugs
37. Donate to Ronald McDonald House
38. Donate to CCHMC child life
39. Have soft serve ice cream
40. Build a fort
41. Have a water fight
42. Have a UDF malt
43. Barnes and Noble summer reading club
44. See a rainbow
45. Pet a turtle
46. Have a Dairy Queen Blizzard
47. Milkshake from Rally's
48. Make a clay whistle at the library
49. Have dinner on the deck
50. Have a baking day
Wednesday, July 30, 2014
Home School Here We Come!!
It has been a long time since I have posted something. To be honest, I'm so busy during the day it's hard to remember to do it at night. :) Carson is doing relatively well at the moment.
We got our approval letter from the school district allowing me to home school him which makes me very happy. I was so afraid that I was going to make the wrong choice by not sending him to school that I really had to sit down and write out a pros and cons list. Part of my reason for having such a hard time with my decision was because we had an 'exit meeting' at school at the beginning of May. This meeting was held at the school with not only the preschool coordinator, his therapists and his teacher Amber but also with the special education department for the school district.
They explained to me that since Carson already has an IEP in place that they would honor it by having him ride a bus that had 5 point harnesses in them and he would also get a bus aide because he isn't able to get on and off safely by himself. Not only that, they were promising he would get an aide for the school day. Maybe not a 1-1 aide but possibly a 1-2 or 1-3 aide depending if there were other children who had similar deficits to Carson. Since we live in a small rural community the school does not have a nurse on staff every day. Because of his diabetes, they even offered to hire a nurse to be at the school full time for him.
I was so overwhelmed when I left that day. I have heard so many horror stories about people having to fight with everything that they have to try to get aides for their children and here Carson was being handed one basically without me even having to so much as ask. So when I got home I was literally in tears because I seriously was about to have a nervous breakdown. To de-stress I started making dinner. Carson was in the other room on his iPad but he kept coming into the kitchen trying to get into the freezer where his beloved chicken nuggets are. Knowing he was hungry, I kept shooing him away so that he wouldn't get burnt by the grease in the pan for the hamburgers and kept telling him dinner would be ready in a few minutes. When he came in for the 5th time again going for the freezer I finally just said, "Okay, what is in this freezer that you want so badly??" He opened the freezer and then pushed my hand in towards a box of Popsicles. Knowing immediately he was trying to tell me his blood sugar was low, I grabbed his meter and sure enough. 58. I swear I felt like I was about an inch tall. Here I was so preoccupied with making dinner that I didn't even have a clue what he was trying to tell me.
That was what made me realize that homeschooling him (for now) is the best option for us. There have been several times that he hasn't shown any symptoms whatsoever that he is low. This happened to be one time that he was able to communicate it to me. What happens if he is in the classroom and, by no fault of the teacher, she is busy with other students and completely misses the signs? The next day I sat down and filled out all the necessary paperwork and had it in the mail by the end of that week. They were supposed to give me a written answer within 2 weeks of them receiving the letter but I still hadn't heard anything by the end of June so I called the county. They told me that they had approved it on June 1 and sent it to the local school district. They thought maybe the superintendent was on vacation because several other families in the same school had already called too.
I finally got my letter on July 23. Of course it was dated June 9. I don't care though. I'm just glad that I got it. I am officially starting August 1. I am trying a child-driven approach since trying to get him to even look at something he isn't interested in is like pulling teeth. Yesterday he counted by 5's all the way to 100 on the whiteboard so I'm not too concerned :)
XX
We got our approval letter from the school district allowing me to home school him which makes me very happy. I was so afraid that I was going to make the wrong choice by not sending him to school that I really had to sit down and write out a pros and cons list. Part of my reason for having such a hard time with my decision was because we had an 'exit meeting' at school at the beginning of May. This meeting was held at the school with not only the preschool coordinator, his therapists and his teacher Amber but also with the special education department for the school district.
They explained to me that since Carson already has an IEP in place that they would honor it by having him ride a bus that had 5 point harnesses in them and he would also get a bus aide because he isn't able to get on and off safely by himself. Not only that, they were promising he would get an aide for the school day. Maybe not a 1-1 aide but possibly a 1-2 or 1-3 aide depending if there were other children who had similar deficits to Carson. Since we live in a small rural community the school does not have a nurse on staff every day. Because of his diabetes, they even offered to hire a nurse to be at the school full time for him.
I was so overwhelmed when I left that day. I have heard so many horror stories about people having to fight with everything that they have to try to get aides for their children and here Carson was being handed one basically without me even having to so much as ask. So when I got home I was literally in tears because I seriously was about to have a nervous breakdown. To de-stress I started making dinner. Carson was in the other room on his iPad but he kept coming into the kitchen trying to get into the freezer where his beloved chicken nuggets are. Knowing he was hungry, I kept shooing him away so that he wouldn't get burnt by the grease in the pan for the hamburgers and kept telling him dinner would be ready in a few minutes. When he came in for the 5th time again going for the freezer I finally just said, "Okay, what is in this freezer that you want so badly??" He opened the freezer and then pushed my hand in towards a box of Popsicles. Knowing immediately he was trying to tell me his blood sugar was low, I grabbed his meter and sure enough. 58. I swear I felt like I was about an inch tall. Here I was so preoccupied with making dinner that I didn't even have a clue what he was trying to tell me.
That was what made me realize that homeschooling him (for now) is the best option for us. There have been several times that he hasn't shown any symptoms whatsoever that he is low. This happened to be one time that he was able to communicate it to me. What happens if he is in the classroom and, by no fault of the teacher, she is busy with other students and completely misses the signs? The next day I sat down and filled out all the necessary paperwork and had it in the mail by the end of that week. They were supposed to give me a written answer within 2 weeks of them receiving the letter but I still hadn't heard anything by the end of June so I called the county. They told me that they had approved it on June 1 and sent it to the local school district. They thought maybe the superintendent was on vacation because several other families in the same school had already called too.
I finally got my letter on July 23. Of course it was dated June 9. I don't care though. I'm just glad that I got it. I am officially starting August 1. I am trying a child-driven approach since trying to get him to even look at something he isn't interested in is like pulling teeth. Yesterday he counted by 5's all the way to 100 on the whiteboard so I'm not too concerned :)
XX
Sunday, March 23, 2014
Back to Posting
It has been a long time since I've posted anything. I have been so busy living the day-to-day, not to mention this winter has been HORRIBLE, that I really haven't had much to post about. Carson has missed a lot of school due to the weather. It always seems to hit early in the week and since school is on Mondays, they cancel.
So a few things that HAVE happened are this:
Carson was denied SSI disability because we had too much money in our bank account. It wasn't really a surprise since we had refinanced the house and had borrowed against the equity but at the same time it sucked because we knew that the only way for him to be eligible was if we spent the money. Since I'm not working anymore we were trying to hold onto it as long as we could in case the furnace broke or something. The major thing that burned me up was that we decided to pay off Baylee's orthodontist bill in full and once the payment posted to the account we turned in the signed paperwork telling SSI they could check our bank records but they didn't. By that point they had already denied him and we didn't know it. So now I have appealed the claim and the woman I have to work with is the most bitter person that I have probably ever dealt with on the phone. I'm trying to cut her some slack since I know that her glamorous job probably has people bitching her out all day but I spoke to her at 9 o'clock in the morning and she was so unpleasant it was sad.
We have also applied for BCMH for Carson. I think I have mentioned this program before. It is something like Medicaid for children with medical handicaps. Hopefully it will cover his hospital bills since they usually cover up to a 5 day stay in the hospital, even if it's the ICU. That bill was $36,000 before insurance! The ambulance ride cost more than the ER visit did!!
This past Wednesday I took Carson to school to have a special 'group therapy' session with Amber's morning pre-school class. I was a little worried since the last one we had gone to was a total nightmare. The therapist had brought in one of those colorful parachutes for the kids to play with/under/etc. and Carson was terrified by it. He sat in the corner most of the time as far away from it as he could possibly get. This time it was so different. He actually sat on the rug when the kids were instructed to do so. The kids were throwing balls back and forth to each other (Amber had Carson in her lap the whole time) and then they worked with hula hoops and bending and contorting with them. He genuinely had a good time. It was nice to see him playing with other kids. It was a first for him. She comes every other week and since we are on spring break this week it won't seem so long until he gets to go again.
Regular school has been interesting. They have been doing testing with him so that they can fill out his exit evaluation and write his IEP for kindergarten. I am anxiously awaiting the results of these tests to see what to do about school next year. I already bought part of the curriculum I am planning on using next year but I still need to know how far 'behind' he his before I figure out anything else. I did find out that I don't petition the school district that he is in for him to be home schooled. I actually have to petition the county. I think as long as I can prove that I have a HS diploma they can't deny me so at least at this point that is working to my advantage. Plus my little sister is almost finished with her first year of college to become a special education teacher. She transferred from Hanover College to Miami (Ohio) University because it's closer to home and they have the courses she needs to take so I will have all her input too as I work through this.
These past few months at home with just me and Carson home together I have focused all my time and energy on him. It was a hard adjustment going from working full-time to staying home and I have to admit that I wasn't watching what I was eating and I have gained a few (or more lol) pounds. I can honestly say that I have been depressed and have engulfed myself with taking care of Carson and his diabetes, which is a full-time job in itself, but also with him having to be watched 24/7 so he's not eating electrical cords or messing with things on the counter tops or the stove. Frankly it's exhausting. I'm still up late nights if he has had insulin later in the evening because I have to check him 3 hours after he gets it to make sure he isn't low and I have found that it's easier to just stay awake rather than go to sleep and then fight to wake up. Then I'm up early to get B on the bus. Some days Carson stays asleep and I can go back to bed and other days I'm not so lucky. Plus the time changed KILLED me. I have no idea why but it seriously took 2 weeks for me to get used to it. Mike looked at me about 3 weeks ago and nicely told me that it's time to do something about the extra weight. He told me he wants me 'healthy' enough so that I can live a long time to take care of Carson. At first I was offended. But he's right. So I decided to start taking time for myself. I am now rotating between running on the treadmill and doing Zumba in the comfort of my living room.
Right now I am running about 10-15 miles a week in the evenings and during the off days for running I do Zumba with one rest day. I don't see a difference with my body yet but mentally I feel so much better. I stream Netflix on my iPad and watch The Walking Dead while I'm running. I can usually do 1 episode per run. It's really motivating and it helps me clear my head, if only for 46 minutes at a time.
I think so far the hardest thing about Carson's diabetes has been knowing that there is only one person who's actions control whether he loses his eyesight, or kidneys, or feet. It's me. I am the only one taking care of his diabetes. Mike doesn't do sugar checks or give insulin. I have done it every time since we have been home from the hospital. I plan my grocery trips, runs etc all based on when I give him his insulin. If I give it to him at noon I know I have to be home by 3 to check him. Sometimes earlier if he was given a larger dose of insulin because sometimes it's too much and he is low by the time I get back. That happened one time here recently and won't happen again. I came in the house to find Carson handing me a tub of yogurt. I told him I needed to check him first before he could have it and Mike told me he had been trying to give it to him for at least a half an hour. When I asked if he had checked him he said no because it wasn't time. When I checked him right then his blood sugar was 29!!! It's not supposed to be below 80!! I was pissed. Being a diabetic himself I figured he would get the fact that Carson was being persistent about the yogurt but he didn't. I hate to say it but now I don't trust Mike. Him having blood sugar issues of his own just makes it that much harder because if he is low how is he supposed to take care of both of them? It's a scary thought.
Anyway. Enough for now. I should probably try to get some sleep.
Hopefully I'll remember to keep this updated more often.
XX
So a few things that HAVE happened are this:
Carson was denied SSI disability because we had too much money in our bank account. It wasn't really a surprise since we had refinanced the house and had borrowed against the equity but at the same time it sucked because we knew that the only way for him to be eligible was if we spent the money. Since I'm not working anymore we were trying to hold onto it as long as we could in case the furnace broke or something. The major thing that burned me up was that we decided to pay off Baylee's orthodontist bill in full and once the payment posted to the account we turned in the signed paperwork telling SSI they could check our bank records but they didn't. By that point they had already denied him and we didn't know it. So now I have appealed the claim and the woman I have to work with is the most bitter person that I have probably ever dealt with on the phone. I'm trying to cut her some slack since I know that her glamorous job probably has people bitching her out all day but I spoke to her at 9 o'clock in the morning and she was so unpleasant it was sad.
We have also applied for BCMH for Carson. I think I have mentioned this program before. It is something like Medicaid for children with medical handicaps. Hopefully it will cover his hospital bills since they usually cover up to a 5 day stay in the hospital, even if it's the ICU. That bill was $36,000 before insurance! The ambulance ride cost more than the ER visit did!!
This past Wednesday I took Carson to school to have a special 'group therapy' session with Amber's morning pre-school class. I was a little worried since the last one we had gone to was a total nightmare. The therapist had brought in one of those colorful parachutes for the kids to play with/under/etc. and Carson was terrified by it. He sat in the corner most of the time as far away from it as he could possibly get. This time it was so different. He actually sat on the rug when the kids were instructed to do so. The kids were throwing balls back and forth to each other (Amber had Carson in her lap the whole time) and then they worked with hula hoops and bending and contorting with them. He genuinely had a good time. It was nice to see him playing with other kids. It was a first for him. She comes every other week and since we are on spring break this week it won't seem so long until he gets to go again.
Regular school has been interesting. They have been doing testing with him so that they can fill out his exit evaluation and write his IEP for kindergarten. I am anxiously awaiting the results of these tests to see what to do about school next year. I already bought part of the curriculum I am planning on using next year but I still need to know how far 'behind' he his before I figure out anything else. I did find out that I don't petition the school district that he is in for him to be home schooled. I actually have to petition the county. I think as long as I can prove that I have a HS diploma they can't deny me so at least at this point that is working to my advantage. Plus my little sister is almost finished with her first year of college to become a special education teacher. She transferred from Hanover College to Miami (Ohio) University because it's closer to home and they have the courses she needs to take so I will have all her input too as I work through this.
These past few months at home with just me and Carson home together I have focused all my time and energy on him. It was a hard adjustment going from working full-time to staying home and I have to admit that I wasn't watching what I was eating and I have gained a few (or more lol) pounds. I can honestly say that I have been depressed and have engulfed myself with taking care of Carson and his diabetes, which is a full-time job in itself, but also with him having to be watched 24/7 so he's not eating electrical cords or messing with things on the counter tops or the stove. Frankly it's exhausting. I'm still up late nights if he has had insulin later in the evening because I have to check him 3 hours after he gets it to make sure he isn't low and I have found that it's easier to just stay awake rather than go to sleep and then fight to wake up. Then I'm up early to get B on the bus. Some days Carson stays asleep and I can go back to bed and other days I'm not so lucky. Plus the time changed KILLED me. I have no idea why but it seriously took 2 weeks for me to get used to it. Mike looked at me about 3 weeks ago and nicely told me that it's time to do something about the extra weight. He told me he wants me 'healthy' enough so that I can live a long time to take care of Carson. At first I was offended. But he's right. So I decided to start taking time for myself. I am now rotating between running on the treadmill and doing Zumba in the comfort of my living room.
Right now I am running about 10-15 miles a week in the evenings and during the off days for running I do Zumba with one rest day. I don't see a difference with my body yet but mentally I feel so much better. I stream Netflix on my iPad and watch The Walking Dead while I'm running. I can usually do 1 episode per run. It's really motivating and it helps me clear my head, if only for 46 minutes at a time.
I think so far the hardest thing about Carson's diabetes has been knowing that there is only one person who's actions control whether he loses his eyesight, or kidneys, or feet. It's me. I am the only one taking care of his diabetes. Mike doesn't do sugar checks or give insulin. I have done it every time since we have been home from the hospital. I plan my grocery trips, runs etc all based on when I give him his insulin. If I give it to him at noon I know I have to be home by 3 to check him. Sometimes earlier if he was given a larger dose of insulin because sometimes it's too much and he is low by the time I get back. That happened one time here recently and won't happen again. I came in the house to find Carson handing me a tub of yogurt. I told him I needed to check him first before he could have it and Mike told me he had been trying to give it to him for at least a half an hour. When I asked if he had checked him he said no because it wasn't time. When I checked him right then his blood sugar was 29!!! It's not supposed to be below 80!! I was pissed. Being a diabetic himself I figured he would get the fact that Carson was being persistent about the yogurt but he didn't. I hate to say it but now I don't trust Mike. Him having blood sugar issues of his own just makes it that much harder because if he is low how is he supposed to take care of both of them? It's a scary thought.
Anyway. Enough for now. I should probably try to get some sleep.
Hopefully I'll remember to keep this updated more often.
XX
Monday, February 10, 2014
Social Secuirty Disability
The last time that I took Carson to see endocrinology at the hospital it was suggested to me that I file for Social Security Disability for him because he is unable to manage his diabetes on his own. I briefly looked into it on the Internet (big surprise lol) and decided to take the plunge.
I called the main number on Thursday two weeks ago. The woman on the phone was really nice. I explained to her that Carson has developmental disabilities and was just diagnosed with type 1 diabetes. She asked me how old he was and when I said 5, she told me that I needed to have an appointment for an interview at one of their offices. She looked at the schedule and the office that it suggested I go to was making appointments in March. I asked if I was able to go to an office that was closer to our home and when she said yes she looked and found that they had an opening for the following Tuesday, 4 days away. I was excited they had something so soon so I took it. She told me to bring his birth certificate and his names of his medications to the meeting.
Stupid me, I thought that this would be a simple process. The next day I got a packet in the mail with a list of things that they would need for the interview and instructions on how to fill out a questionnaire online about his health history. I got right to work. The health history wanted every illness, doctor's appointment, test etc that he had ever had in his lifetime. Can I just say thank god for insurance apps that let you go back and see that far back in time otherwise I would have never known it all.
The packet had very limited information on what specifically they would be looking for in terms of disability and what would make him ineligible. The list of items included w2 information for Mike, social security numbers for everyone in the household, life insurance policies, any doctor or school information we had handy etc.
I was so nervous driving to the interview. The place was crazy. You walk in and there is a kiosk that you punch in your social security number and answer a couple of questions. It then pops out a little ticket and then you sit and wait for your number to be called. I had Carson with me in his stroller but he had cracked the screen on his iPad the week before and it was being fixed with good 'ole Geek Squad so I had nothing to keep him entertained. The place was dirty and the people in there were pretty interesting. They even had an armed security guard at the door just to make you feel even more uneasy about being in a government building.
They called my name and had me go into another little room off of the main room. It had little windows with shutters on them and two chairs at each window. The woman who interviewed us was really nice. She had a thick accent which sometimes made it hard for me to understand what she was asking and I know she probably thought that I was an idiot because it took me a few seconds to work out in my head what she was asking before I would answer her.
The first thing they tell you is that Social Security Disability is a needs-based program. For that reason they take all of your income into consideration before they can make a decision about coverage. They asked all sorts of things that I wasn't prepared for. They wanted to know how much we owed on my car, and how much our cars were worth and how much cash we had etc. It was so shocking to me. She asked how much money we had in savings, if Mike had a 401K, if we had life insurance and how much the pay out was for that particular day. We went through most of it but there were a few things I wasn't sure of.
We then went on to Carson's information. When he was diagnosed with each of his problems, what they caused, his meds, his doctors, his therapists etc. Looking at him she could tell that I wasn't pulling her leg that he needed help with things. It seemed easy enough.
Then after about an hour the interview was winding down. She then wanted to know what banks we used. I told her mine and how much money I had in my account. She then asked for Mike's. I told her the name and then told her about how much I thought he had in CHECKING because he doesn't have a savings account. She stared me dead in the face and said, " I asked you about that earlier." I said, "No. You asked about savings. You didn't say anything about checking accounts." I just figured they wanted to know how much we were saving and getting interest on and because we don't share bank accounts I really couldn't give her an exact amount.
She told me that anything over $5000 in ANY equity would make Carson ineligible for SSDI. My heart sank. I knew that Mike had just got finished paying bills the night before but I honestly didn't know how much he had and I told her that. She told me that he needed less than $4000 in his account and basically told me to go home and pay bills just so we would be under that line. I left feeling hopeful but once I called Mike and told him what she said I knew that it was going to be a struggle. They couldn't automatically look at Mike's information without his permission so they sent home a form for him to fill out either giving or denying permission for them to look into bank records etc.
We had refinanced our house a while ago and had borrowed money against the equity to pay off credit card debt that we had. I didn't realize that we still had a little bit of that money left over and then of course Mike gets paid every 2 weeks so that's just more money going into that account. We fought for days on what to do. He wanted to drain the account completely and pay on my car and I thought it was a terrible idea. Right now we are in the hole every month about $120 because of all the meds we have to pay for. That was why I wanted to apply for SSDI in the first place thinking Carson would get Medicaid for disability as a secondary insurance and it would help with the medical/pharmacy bills. I knew that if he was turned down for another reason then we had just screwed ourselves by draining the account. Again-we don't have a TON of money in the account but it is over what SSI says we can have. I just like the idea of a cushion just in case something happens. We just had to replace our dishwasher right before Christmas and Mike's car needs the transmission rebuilt. What if the furnace goes next? That's not exactly something I can ignore if it breaks especially since it's so frigging cold and we have 7 inches of snow and ice on the ground.
Plus the bank records they want are for Jan 2014 so it would look really suspicious to have the money in the account and then magically right after we have the meeting poof the money disappears. And then on top of all that when you read the form they wanted him to sign it says in itty-bitty print that basically they can go into our bank accounts any time they want to just for the hell of it because we signed the form. Total shit. So unfortunately this am I put in a call to the contact person handling Carson's file and told him that we have too much money in our bank account and we needed to withdraw the application. He didn't call me back today so I have no idea what happens from here at this point.
It's really a shame that they don't look at the big picture about all of our finances. If they saw the medical bills we have from his hospital visit ($37, 000 before insurance) , the cost of his meds plus Mike's etc they would see that we really do need the help but of course it doesn't work that way. I wasn't in it for the money anyway. I was hoping for help with paying for all of his hospital stuff and his medications but also I thought that if he was deemed disabled by the government now that it would be so much easier when he is older for me to try to get guardianship of him like his geneticist told me I will need to do.
Maybe if that guy calls me back tomorrow he will have more useful information for me. Until then I'm going to bed. B will be up in 6 hours.
XX
I called the main number on Thursday two weeks ago. The woman on the phone was really nice. I explained to her that Carson has developmental disabilities and was just diagnosed with type 1 diabetes. She asked me how old he was and when I said 5, she told me that I needed to have an appointment for an interview at one of their offices. She looked at the schedule and the office that it suggested I go to was making appointments in March. I asked if I was able to go to an office that was closer to our home and when she said yes she looked and found that they had an opening for the following Tuesday, 4 days away. I was excited they had something so soon so I took it. She told me to bring his birth certificate and his names of his medications to the meeting.
Stupid me, I thought that this would be a simple process. The next day I got a packet in the mail with a list of things that they would need for the interview and instructions on how to fill out a questionnaire online about his health history. I got right to work. The health history wanted every illness, doctor's appointment, test etc that he had ever had in his lifetime. Can I just say thank god for insurance apps that let you go back and see that far back in time otherwise I would have never known it all.
The packet had very limited information on what specifically they would be looking for in terms of disability and what would make him ineligible. The list of items included w2 information for Mike, social security numbers for everyone in the household, life insurance policies, any doctor or school information we had handy etc.
I was so nervous driving to the interview. The place was crazy. You walk in and there is a kiosk that you punch in your social security number and answer a couple of questions. It then pops out a little ticket and then you sit and wait for your number to be called. I had Carson with me in his stroller but he had cracked the screen on his iPad the week before and it was being fixed with good 'ole Geek Squad so I had nothing to keep him entertained. The place was dirty and the people in there were pretty interesting. They even had an armed security guard at the door just to make you feel even more uneasy about being in a government building.
They called my name and had me go into another little room off of the main room. It had little windows with shutters on them and two chairs at each window. The woman who interviewed us was really nice. She had a thick accent which sometimes made it hard for me to understand what she was asking and I know she probably thought that I was an idiot because it took me a few seconds to work out in my head what she was asking before I would answer her.
The first thing they tell you is that Social Security Disability is a needs-based program. For that reason they take all of your income into consideration before they can make a decision about coverage. They asked all sorts of things that I wasn't prepared for. They wanted to know how much we owed on my car, and how much our cars were worth and how much cash we had etc. It was so shocking to me. She asked how much money we had in savings, if Mike had a 401K, if we had life insurance and how much the pay out was for that particular day. We went through most of it but there were a few things I wasn't sure of.
We then went on to Carson's information. When he was diagnosed with each of his problems, what they caused, his meds, his doctors, his therapists etc. Looking at him she could tell that I wasn't pulling her leg that he needed help with things. It seemed easy enough.
Then after about an hour the interview was winding down. She then wanted to know what banks we used. I told her mine and how much money I had in my account. She then asked for Mike's. I told her the name and then told her about how much I thought he had in CHECKING because he doesn't have a savings account. She stared me dead in the face and said, " I asked you about that earlier." I said, "No. You asked about savings. You didn't say anything about checking accounts." I just figured they wanted to know how much we were saving and getting interest on and because we don't share bank accounts I really couldn't give her an exact amount.
She told me that anything over $5000 in ANY equity would make Carson ineligible for SSDI. My heart sank. I knew that Mike had just got finished paying bills the night before but I honestly didn't know how much he had and I told her that. She told me that he needed less than $4000 in his account and basically told me to go home and pay bills just so we would be under that line. I left feeling hopeful but once I called Mike and told him what she said I knew that it was going to be a struggle. They couldn't automatically look at Mike's information without his permission so they sent home a form for him to fill out either giving or denying permission for them to look into bank records etc.
We had refinanced our house a while ago and had borrowed money against the equity to pay off credit card debt that we had. I didn't realize that we still had a little bit of that money left over and then of course Mike gets paid every 2 weeks so that's just more money going into that account. We fought for days on what to do. He wanted to drain the account completely and pay on my car and I thought it was a terrible idea. Right now we are in the hole every month about $120 because of all the meds we have to pay for. That was why I wanted to apply for SSDI in the first place thinking Carson would get Medicaid for disability as a secondary insurance and it would help with the medical/pharmacy bills. I knew that if he was turned down for another reason then we had just screwed ourselves by draining the account. Again-we don't have a TON of money in the account but it is over what SSI says we can have. I just like the idea of a cushion just in case something happens. We just had to replace our dishwasher right before Christmas and Mike's car needs the transmission rebuilt. What if the furnace goes next? That's not exactly something I can ignore if it breaks especially since it's so frigging cold and we have 7 inches of snow and ice on the ground.
Plus the bank records they want are for Jan 2014 so it would look really suspicious to have the money in the account and then magically right after we have the meeting poof the money disappears. And then on top of all that when you read the form they wanted him to sign it says in itty-bitty print that basically they can go into our bank accounts any time they want to just for the hell of it because we signed the form. Total shit. So unfortunately this am I put in a call to the contact person handling Carson's file and told him that we have too much money in our bank account and we needed to withdraw the application. He didn't call me back today so I have no idea what happens from here at this point.
It's really a shame that they don't look at the big picture about all of our finances. If they saw the medical bills we have from his hospital visit ($37, 000 before insurance) , the cost of his meds plus Mike's etc they would see that we really do need the help but of course it doesn't work that way. I wasn't in it for the money anyway. I was hoping for help with paying for all of his hospital stuff and his medications but also I thought that if he was deemed disabled by the government now that it would be so much easier when he is older for me to try to get guardianship of him like his geneticist told me I will need to do.
Maybe if that guy calls me back tomorrow he will have more useful information for me. Until then I'm going to bed. B will be up in 6 hours.
XX
Sunday, February 9, 2014
School: Day 16
Things around here have been crazy and I missed posting last week about school. When I got there I had a meeting first off with the psychologist, Amber and the preschool coordinator to sign off on scheduling Carson's exit evaluation for preschool. It's sad that after 3 years of seeing the same faces every week it's coming to an end and it's not fair because we have missed so many days because of the weather too. I have to admit that I am excited to see what the results of this test will be and see how much he has improved and what that will mean for him cognitively. When he was tested at the age of 3 he was between 12 and 15 months- so about half his age.
While I was in the meeting Carson was working with Patty and her student on the stairs. They scattered the numbers around on the landings this time and had him find the numbers in order and bring them down. She said that he went all the way up to the nurse's tower which I was sad that I missed. He is doing reciprocal up and 2 feet per step on the way down with limited help.
Our meeting ran a little over so when I made it down to the classroom Patty, LaQuita and the student were trying to contain Carson and the other little boy while his dad was in his meeting after me. I snuck in the door and made my way to the back of the classroom. Carson had been doing so well without me that I didn't want him to see me and come "running" to me. LaQuita read the boys a book and Carson was really into it. He was pointing to the items in the book that she would ask him. The teachers noticed while LaQuita was reading that the other little boy in the class was coughing and felt warm. When his dad came into the classroom they told him and he admitted that he was running a fever!! I could've punched him. The last thing Carson needs is to be sick on top of his diabetes. That would make his blood sugar skyrocket. He decided that it was best to take him home and as soon as he left the room everyone washed their hands just to be sure nothing was being contaminated.
After that, class was a breeze. It was 1-1 therapy again for him which was wonderful. They all tag teamed him and made it fun. Patty brought out a Twister mat and they had him spin the spinner and then 'hop' down the color that it landed on to LaQuita who had an iPad for him to use. He would get to answer a question on the iPad and then go back to the start and do it over again. I wonder where Jen was now that I think about it...
After a while they could tell that he was getting bored so they switched it up and had Carson jumping off of a stool. He really only did it one or two times. By then he noticed that I was in the room and would come to me every chance that he got.
When Patty and her student were getting ready to leave LaQuita was sitting on the floor with her iPad and was trying to get Carson to spell answers to questions for her with an app that looks like the magnetic letters that I had on my fridge as a kid. She asked what his dog's name was. He put two. Oh. You have 2 dogs Carson? What color is your dog? Nothing. But then he got funny. He started writing out the numbers, in order. one. two. three. etc. Something I had never seen him do before. Then he decided to show off a little. He would stand at the corner of the mat they were on and he would hop the number of times that he had written. He did this from three all the way to nineteen. Now think about that. That means in total he hopped 304 times. I don't know where he came up with the strength or the energy to do it but he did. I thought Patty was going to fall over from the shock. She has been fighting him all year just to get one lousy jump out of him. Then all of a sudden in one day he knocks out 300+ out of nowhere.
That is probably the thing that I love best about this little guy. When he was a baby and we had Help Me Grow in our house doing physical therapy with him every other week I was specifically told that because of his hypotonia he wouldn't be able to jump. Ever. It was just something that was going to be impossible for him to muster the strength to do because you really need the core muscles and the fact that you're fighting gravity it wasn't something that could be done. He proved them wrong. Just like he's proven so many others (including myself) wrong too.
Tomorrow we have school again and as far as I know he is going to be alone again because his classmate will be out of town. I can't wait to see what he accomplishes tomorrow. Maybe he will show those stairs who's boss.
XX
While I was in the meeting Carson was working with Patty and her student on the stairs. They scattered the numbers around on the landings this time and had him find the numbers in order and bring them down. She said that he went all the way up to the nurse's tower which I was sad that I missed. He is doing reciprocal up and 2 feet per step on the way down with limited help.
Our meeting ran a little over so when I made it down to the classroom Patty, LaQuita and the student were trying to contain Carson and the other little boy while his dad was in his meeting after me. I snuck in the door and made my way to the back of the classroom. Carson had been doing so well without me that I didn't want him to see me and come "running" to me. LaQuita read the boys a book and Carson was really into it. He was pointing to the items in the book that she would ask him. The teachers noticed while LaQuita was reading that the other little boy in the class was coughing and felt warm. When his dad came into the classroom they told him and he admitted that he was running a fever!! I could've punched him. The last thing Carson needs is to be sick on top of his diabetes. That would make his blood sugar skyrocket. He decided that it was best to take him home and as soon as he left the room everyone washed their hands just to be sure nothing was being contaminated.
After that, class was a breeze. It was 1-1 therapy again for him which was wonderful. They all tag teamed him and made it fun. Patty brought out a Twister mat and they had him spin the spinner and then 'hop' down the color that it landed on to LaQuita who had an iPad for him to use. He would get to answer a question on the iPad and then go back to the start and do it over again. I wonder where Jen was now that I think about it...
After a while they could tell that he was getting bored so they switched it up and had Carson jumping off of a stool. He really only did it one or two times. By then he noticed that I was in the room and would come to me every chance that he got.
When Patty and her student were getting ready to leave LaQuita was sitting on the floor with her iPad and was trying to get Carson to spell answers to questions for her with an app that looks like the magnetic letters that I had on my fridge as a kid. She asked what his dog's name was. He put two. Oh. You have 2 dogs Carson? What color is your dog? Nothing. But then he got funny. He started writing out the numbers, in order. one. two. three. etc. Something I had never seen him do before. Then he decided to show off a little. He would stand at the corner of the mat they were on and he would hop the number of times that he had written. He did this from three all the way to nineteen. Now think about that. That means in total he hopped 304 times. I don't know where he came up with the strength or the energy to do it but he did. I thought Patty was going to fall over from the shock. She has been fighting him all year just to get one lousy jump out of him. Then all of a sudden in one day he knocks out 300+ out of nowhere.
That is probably the thing that I love best about this little guy. When he was a baby and we had Help Me Grow in our house doing physical therapy with him every other week I was specifically told that because of his hypotonia he wouldn't be able to jump. Ever. It was just something that was going to be impossible for him to muster the strength to do because you really need the core muscles and the fact that you're fighting gravity it wasn't something that could be done. He proved them wrong. Just like he's proven so many others (including myself) wrong too.
Tomorrow we have school again and as far as I know he is going to be alone again because his classmate will be out of town. I can't wait to see what he accomplishes tomorrow. Maybe he will show those stairs who's boss.
XX
Monday, January 27, 2014
A New Week
It's Monday! The start of a new (COLD!!) week.
Carson dropped his iPad on the kitchen floor last week and shattered the screen. Because it has been so cold and snowy I haven't taken it to Best Buy yet to get it fixed so I have been letting him use Baylee's. He is now working on apps that are geared for older kids which is amazing and hilarious at the same time. He is working with Coop Fractions, which is exactly what it sounds like. It is a chicken in a coop laying eggs with fractions on them and you have to answer questions. He is getting really good at some of them.
He is also playing Bugs and Buttons, Bugs and Buttons 2 and Bugs and Buttons 3. Each of these deal with math and numbers. He is starting to learn how to tally and sort items. He is also using one of her apps that is first-fifth grade sight words. You can play word BINGO, sort contractions and all sorts of other phonics related games. He is getting really good. He really likes playing BINGO. It's amazing to me how he is so smart in so many areas but I still catch him trying to chew on electrical cords that are plugged into the wall. The disconnect between learning on an iPad and real life is depressing. I mean it's great, REALLY great that he is able to learn as much as he does and be able to retain the knowledge, but at the same time I feel so sorry for him because he will never be able to hold down a 'real' job and show people his potential.
This weekend I joined up with JDRF of Southwest Ohio and submitted an application to be a team captain for a fundraising walk in June at Kings Island for juvenile diabetes. We are under the name Carson's Crusaders. I know I probably won't raise much money but just knowing that we're out there doing something makes me feel better about things. Maybe there will be some good information there or even some families that live close to us.
I'm at the point with my mom where I am trying not to call her so much. I think it's probably best if I just let things go for a while. I'm not saying disown her or anything but it has been so hard trying to talk to her about my feelings etc and have her just throw them in my face and tell me I need to change my attitude and suck it up. Yeah, no shit I have to deal with all of it whether I want to or not. It's not like I'm saying I quit or anything. I just wanted someone to LISTEN but all she wants to do is just throw it in my face. I was emailing back and forth with my former boss on Saturday and telling her about how my mom just doesn't seem to get it when it comes to all the crap I am dealing with right now. She understands more than anyone else I have ever met because of all of the things she has gone through with her daughter. She told me when she gets back in town we will have to meet up for lunch one day. It will be nice to just get out of the house.
Carson's school was cancelled for today and temps are quickly dropping back into the single digits so I'm not really sure what we can get into today but whatever it is, I hope it's messy.
XX
Carson dropped his iPad on the kitchen floor last week and shattered the screen. Because it has been so cold and snowy I haven't taken it to Best Buy yet to get it fixed so I have been letting him use Baylee's. He is now working on apps that are geared for older kids which is amazing and hilarious at the same time. He is working with Coop Fractions, which is exactly what it sounds like. It is a chicken in a coop laying eggs with fractions on them and you have to answer questions. He is getting really good at some of them.
He is also playing Bugs and Buttons, Bugs and Buttons 2 and Bugs and Buttons 3. Each of these deal with math and numbers. He is starting to learn how to tally and sort items. He is also using one of her apps that is first-fifth grade sight words. You can play word BINGO, sort contractions and all sorts of other phonics related games. He is getting really good. He really likes playing BINGO. It's amazing to me how he is so smart in so many areas but I still catch him trying to chew on electrical cords that are plugged into the wall. The disconnect between learning on an iPad and real life is depressing. I mean it's great, REALLY great that he is able to learn as much as he does and be able to retain the knowledge, but at the same time I feel so sorry for him because he will never be able to hold down a 'real' job and show people his potential.
This weekend I joined up with JDRF of Southwest Ohio and submitted an application to be a team captain for a fundraising walk in June at Kings Island for juvenile diabetes. We are under the name Carson's Crusaders. I know I probably won't raise much money but just knowing that we're out there doing something makes me feel better about things. Maybe there will be some good information there or even some families that live close to us.
I'm at the point with my mom where I am trying not to call her so much. I think it's probably best if I just let things go for a while. I'm not saying disown her or anything but it has been so hard trying to talk to her about my feelings etc and have her just throw them in my face and tell me I need to change my attitude and suck it up. Yeah, no shit I have to deal with all of it whether I want to or not. It's not like I'm saying I quit or anything. I just wanted someone to LISTEN but all she wants to do is just throw it in my face. I was emailing back and forth with my former boss on Saturday and telling her about how my mom just doesn't seem to get it when it comes to all the crap I am dealing with right now. She understands more than anyone else I have ever met because of all of the things she has gone through with her daughter. She told me when she gets back in town we will have to meet up for lunch one day. It will be nice to just get out of the house.
Carson's school was cancelled for today and temps are quickly dropping back into the single digits so I'm not really sure what we can get into today but whatever it is, I hope it's messy.
XX
Thursday, January 23, 2014
Home School Options
I, like most of the country, am so tired of this winter! Today I think the high was a whopping 7 degrees. Baylee has had school (at regular time) yesterday and today which is weird to me because a few weeks ago when it was this cold they closed the schools down. All of the districts around us are either closed or on a delayed schedule but not hers. I am thinking it probably has something to do with the fact that they have already used up all of their snow days but at the same time it is painful to be out for just a few minutes. I feel bad for the bus drivers having to open the doors all the time to let kids on and off the bus.
One thing I am really excited about is today I got my first homeschooling catalog in the mail! The company is called Timberdoodle. I found them by just doing a search on Bing. They offer three levels of homeschooling kits that you buy each year and it even gives you guidelines on when to teach each thing that is in their kit. They have a video on their website that also says if you have a child who is a level higher in, say, reading you can call them and they will swap out the reading book in the grade you are buying for another one.
Looking through the catalog I have to admit I am stuck between the Pre-K curriculum and the kindergarten one. There are things in each that I think would be beneficial to Carson but I'm not sure how much mix-matching they will let me do. I am still waiting until Carson has his evaluation next month to decide anything 100% - not to mention I still need to talk to some people in the district to even see what my options are for him. I also don't want to spend $600 on a kit that I won't be able to use if the district says that I can't homeschool him.
The district that Baylee is in apparently has a special school inside it that is for autistic kids. The district Carson is in does not offer such schooling. I think if they deny my request to homeschool then I will have to look into the autistic program and see what they can offer Carson. Here in Ohio we are given $20,000 a year to pay for programs like that for kids who need the extra support. The family that we went to visit in Toledo over the summer just moved to Illinois and they don't have that funding anymore. When she posted on Facebook how mad she was at the school system everyone around her seemed stunned that we are offered the money here. They had never heard of it before. Now, at this point WE have not officially been offered any financial help for schooling. Amber mentioned it a long time ago at school but it hasn't been brought up since.
Speaking of Amber, I got an e-mail from her that they canceled school for Monday so it looks like it'll just be me and the boy alone again. He cracked me up earlier today. He was using Baylee's iPad since he shattered the screen on his yesterday. He was playing sushi monster (not well) and was trying to make an in-app purchase. There are parental controls on those apps and it was asking the question: 2x6=? [ ]. Carson's answer? CAKE. OMG it was so funny. Such logic.
And to add more stress to my stress (and my twitchy eye) now our roof is leaking! Every room along the front of our house has water spots on the ceilings. We haven't even been in this house 10 years and we are the first occupants! I'm letting Mike take care of the details for this one. And we're getting more snow tomorrow and Saturday too. At this point I just have to laugh. What else can you do?
XX
One thing I am really excited about is today I got my first homeschooling catalog in the mail! The company is called Timberdoodle. I found them by just doing a search on Bing. They offer three levels of homeschooling kits that you buy each year and it even gives you guidelines on when to teach each thing that is in their kit. They have a video on their website that also says if you have a child who is a level higher in, say, reading you can call them and they will swap out the reading book in the grade you are buying for another one.
Looking through the catalog I have to admit I am stuck between the Pre-K curriculum and the kindergarten one. There are things in each that I think would be beneficial to Carson but I'm not sure how much mix-matching they will let me do. I am still waiting until Carson has his evaluation next month to decide anything 100% - not to mention I still need to talk to some people in the district to even see what my options are for him. I also don't want to spend $600 on a kit that I won't be able to use if the district says that I can't homeschool him.
The district that Baylee is in apparently has a special school inside it that is for autistic kids. The district Carson is in does not offer such schooling. I think if they deny my request to homeschool then I will have to look into the autistic program and see what they can offer Carson. Here in Ohio we are given $20,000 a year to pay for programs like that for kids who need the extra support. The family that we went to visit in Toledo over the summer just moved to Illinois and they don't have that funding anymore. When she posted on Facebook how mad she was at the school system everyone around her seemed stunned that we are offered the money here. They had never heard of it before. Now, at this point WE have not officially been offered any financial help for schooling. Amber mentioned it a long time ago at school but it hasn't been brought up since.
Speaking of Amber, I got an e-mail from her that they canceled school for Monday so it looks like it'll just be me and the boy alone again. He cracked me up earlier today. He was using Baylee's iPad since he shattered the screen on his yesterday. He was playing sushi monster (not well) and was trying to make an in-app purchase. There are parental controls on those apps and it was asking the question: 2x6=? [ ]. Carson's answer? CAKE. OMG it was so funny. Such logic.
And to add more stress to my stress (and my twitchy eye) now our roof is leaking! Every room along the front of our house has water spots on the ceilings. We haven't even been in this house 10 years and we are the first occupants! I'm letting Mike take care of the details for this one. And we're getting more snow tomorrow and Saturday too. At this point I just have to laugh. What else can you do?
XX
Wednesday, January 22, 2014
Diabetes Clinic
Today Carson had his first diabetes check since leaving the hospital. They first had me meet with a social worker, which in my stuck-up days I would've bitched about it and complained and refused to do it. But guess what? It's MANDATORY. She was a really nice girl. We sat in a room with a table and a few chairs and just hung out. I fed Carson his breakfast while we chatted about school options and caregiver classes if anyone else in my family was interested (not a chance in Hell unfortunately). We talked about my stress and how it is completely normal to feel overwhelmed and under appreciated. I already knew that I guess but I feel like such a complainer.
She promised me that once we have his sugars under control a little better and they back off of the night checks I will start to feel better because I will have more than 2.5 hours of sleep at a time. I hope that's all it is. Sleep deprivation. It makes sense. I check his blood every three hours, even through the night. So let's say I check him at midnight. Next check is 3 am. I don't fall asleep right at midnight. I have to write down his numbers, do some math if it's high and then give him insulin if he needs it. By then it's 12:30. By the time I lay down and actually fall asleep it's more like 1 am and I'm back up again at 3 for his next check. So then I'm up at 6 and I have a choice. Stay up since Baylee has to be up at 7 am OR I can lay down for another 15 or so minutes and hope I actually fall asleep. This is where I get into trouble because I will fall asleep because I'm just exhausted and then I oversleep to get her on the bus.
Last week I was fortunate enough that he stayed asleep and I was able to get Baylee on the bus without incident. I then went back to bed with Carson and slept until 9:15. We would've slept longer but I woke up to my phone ringing because Amber had decided to stop by and see us since it was a teacher work day and the pipes busted at the school because of the temps and she didn't want to drive all the way home. So I'm running around like crazy trying to clean as much of the house as I could in the 4 minutes it took her to get to us. It was almost comical.
She mentioned to us that I should start trying to get social security disability since this is just another thing limiting what he will be able to do when he is older. I guess I'm really going to have to buckle down and make the call. I have been putting it off because I didn't want to have another problem to deal with at the present moment.
After the social worker we met with a nurse who took Carson's vitals and then our endocrine doc came to see us. His A1C (measures how long his blood sugar has been high in his system) is now down to 9.2. It was 9.4 at the hospital. They want it around 8.5 when it's all said and done. An adult should be around 7. She told me that it's good that it's going down slowly because that means he isn't having too many low sugar levels to bring it down faster.
She told me that he is starting to plateau with his numbers which means he is settling into his 'honeymoon period'. When this period is over (in 6 months to a year) his pancreas will have shut down completely and his numbers will start to rise again. When that happens they will have to adjust his insulin levels again. It's so weird when you think about this ugly little organ that's all lumpy in your body and how 'smart' it actually is. We are having such a hard time mimicking that stupid ugly organ just to keep my little guy alive.
Carson did great today. He let his doc listen to his chest without screaming and even let her look at his injection sites and fingers to see if they were infected (nope) or being over-used (not a chance-yet). She said to come back in a month and after that it will be every 3 months.
So for now we are crossing our fingers for 2 more nights of consistent numbers. If that is the case she said I can back off to just checking sugar levels at midnight and 6 am!! I hope, I hope, I hope.
XX
She promised me that once we have his sugars under control a little better and they back off of the night checks I will start to feel better because I will have more than 2.5 hours of sleep at a time. I hope that's all it is. Sleep deprivation. It makes sense. I check his blood every three hours, even through the night. So let's say I check him at midnight. Next check is 3 am. I don't fall asleep right at midnight. I have to write down his numbers, do some math if it's high and then give him insulin if he needs it. By then it's 12:30. By the time I lay down and actually fall asleep it's more like 1 am and I'm back up again at 3 for his next check. So then I'm up at 6 and I have a choice. Stay up since Baylee has to be up at 7 am OR I can lay down for another 15 or so minutes and hope I actually fall asleep. This is where I get into trouble because I will fall asleep because I'm just exhausted and then I oversleep to get her on the bus.
Last week I was fortunate enough that he stayed asleep and I was able to get Baylee on the bus without incident. I then went back to bed with Carson and slept until 9:15. We would've slept longer but I woke up to my phone ringing because Amber had decided to stop by and see us since it was a teacher work day and the pipes busted at the school because of the temps and she didn't want to drive all the way home. So I'm running around like crazy trying to clean as much of the house as I could in the 4 minutes it took her to get to us. It was almost comical.
She mentioned to us that I should start trying to get social security disability since this is just another thing limiting what he will be able to do when he is older. I guess I'm really going to have to buckle down and make the call. I have been putting it off because I didn't want to have another problem to deal with at the present moment.
After the social worker we met with a nurse who took Carson's vitals and then our endocrine doc came to see us. His A1C (measures how long his blood sugar has been high in his system) is now down to 9.2. It was 9.4 at the hospital. They want it around 8.5 when it's all said and done. An adult should be around 7. She told me that it's good that it's going down slowly because that means he isn't having too many low sugar levels to bring it down faster.
She told me that he is starting to plateau with his numbers which means he is settling into his 'honeymoon period'. When this period is over (in 6 months to a year) his pancreas will have shut down completely and his numbers will start to rise again. When that happens they will have to adjust his insulin levels again. It's so weird when you think about this ugly little organ that's all lumpy in your body and how 'smart' it actually is. We are having such a hard time mimicking that stupid ugly organ just to keep my little guy alive.
Carson did great today. He let his doc listen to his chest without screaming and even let her look at his injection sites and fingers to see if they were infected (nope) or being over-used (not a chance-yet). She said to come back in a month and after that it will be every 3 months.
So for now we are crossing our fingers for 2 more nights of consistent numbers. If that is the case she said I can back off to just checking sugar levels at midnight and 6 am!! I hope, I hope, I hope.
XX
Tuesday, January 21, 2014
Stress (again)
Okay. I have a confession. I am beyond stressed right now. I am having such a hard time finding a balance between everything going on in my life. Between the regular house stuff, dishes laundry etc and managing all of Carson's needs plus everything that Baylee has going on I can't seem to keep up. I feel like I am running in circles trying to half-ass everything just so I can say it's been 'done'. Example: I wash the clothes, I put them in the dryer and start a new load. When the dryer is done I put all of the clothes that were in it into a chair in my living room and switch the wet clothes to the dryer. Always thinking I will fold them later I move on to another chore in the house (make food, dishes etc). I NEVER get back to the clothes in the chair. Okay, maybe not NEVER but not the rest of that day for sure. My house is dusty, there is something on every flat surface (mail, etc) and I can't tell you the last time I made a bed.
Carson is a full-time job. I seriously can't look away from him because when I look back he is trying to chew on an electrical cord or eat paper or climb onto the kitchen table. Between that and now I have to check his sugar every three hours and correct when it's high (or low). If it's high I go ahead and feed him again just so I feel better about having to stab him in the leg or arm again. Compound that with a really harsh winter that has left me home bound for almost the past week (and school out for Baylee). She is at that age now where I'm an idiot, she knows it all and we have been butting heads constantly. I think I've mentioned before that she's a mini-me. I seriously don't know how I survived my childhood without my mom knocking my lights out. I love her so much but I have to admit it is so much easier when she is at school.
Part of that problem is the fact that I really have no one to talk to about what is stressing me out. Mike is worried enough about finances and work and putting food on the table. We never really talked about Carson's chromosomal diagnosis (can you say elephant?) and now with the diabetes it is even worse. I relay to him the messages from the docs about changing insulin doses etc but Mike hasn't given Carson one injection since probably the day we came home from the hospital. I am up every three hours during the night checking blood sugar. I have done that since the beginning. Mike hasn't done it once. Even on the weekends. His excuse is that he can't see very well without his contacts BUT he has glasses so there goes that theory.
My best friend is great but she is so busy herself with her three kids that I don't really feel like I can mention anything to her because, well, she doesn't get it. She was blessed with three perfectly healthy kids and I don't want to be Debby Downer when I do get the chance to talk to her.
The one person that I could talk to was my boss' wife. Now that I am no longer working I'm finding it longer and longer between conversations. I don't blame her. She's in her 60's and busy enjoying the life she now has and the freedom that comes with it. I think they will be moving soon to Florida so it's not like I'm ever really going to be able to see her again anyway.
The one person I wish I could talk to is my mom but frankly it's just not possible. I don't know if it's she doesn't care or if she just doesn't want to believe what it going on. She actually had the nerve the other day to tell me that to her it feels like I have taken custody of MY kids from her! She is referring to the fact that she used to babysit the kids for me when I worked. Granted, she did have them a lot BUT I never worked full-time. For a while it was 3 days a week, then it went to a 3/4 split and then I worked 4 days a week but only 3 weeks a month and then I would get a week off. I was so flabbergasted I didn't know what to say. Considering the fact that she never listened to what I wanted for my kids (diet, sunscreen etc) and now she has such a hard time saying no to them it's hard for me to even be over there especially when it comes to Carson because when I quit working it too me weeks to get him off of drinking Coke. He would bring me can after can out of my fridge asking for it. I finally got smart and started leaving it in the garage where he couldn't reach it. I would give him a little in a cup at the beginning because I figured he was having caffeine withdrawals and it would be easier to wean him off little by little. Now that he is diabetic I can't have him at her house trying to drink from her cup and her turning the other way.
Tomorrow Carson has two appointments at Children's. One is to see his nurse practitioner and the other is with a social worker. I really don't want to spill my guts to a state mandated worker but it may come to that. Maybe they can give me some coping strategies that will work. I still wish this was all a dream but I know it's not. Each day is so different with him. Some days he's great with sugar checks and other days I have to hold him down. Tonight he tried to rip the needle out of my hand after I had already stuck him in the leg.
I'm sure if I could sleep through the night for a few nights in a row I would probably feel a lot better but they just changed his Lantus dose again and gave me strict instructions to check it every 3 hours. I had been slipping and letting it go to 4 or 4.5. I would set my alarm for the 3 hours and then either sleep through it or hit snooze for over an hour before I'd wake up and realize what I was doing. I have even been putting it across the room and I'm still figuring out how to sleep walk to the alarm just to hit snooze for another 9 minutes, which then turns to 60-75!
So I'm off for another sugar check. Crossing my fingers it's within range. Then I can go to bed for my 3 hours and then back at it again later....
XX
Carson is a full-time job. I seriously can't look away from him because when I look back he is trying to chew on an electrical cord or eat paper or climb onto the kitchen table. Between that and now I have to check his sugar every three hours and correct when it's high (or low). If it's high I go ahead and feed him again just so I feel better about having to stab him in the leg or arm again. Compound that with a really harsh winter that has left me home bound for almost the past week (and school out for Baylee). She is at that age now where I'm an idiot, she knows it all and we have been butting heads constantly. I think I've mentioned before that she's a mini-me. I seriously don't know how I survived my childhood without my mom knocking my lights out. I love her so much but I have to admit it is so much easier when she is at school.
Part of that problem is the fact that I really have no one to talk to about what is stressing me out. Mike is worried enough about finances and work and putting food on the table. We never really talked about Carson's chromosomal diagnosis (can you say elephant?) and now with the diabetes it is even worse. I relay to him the messages from the docs about changing insulin doses etc but Mike hasn't given Carson one injection since probably the day we came home from the hospital. I am up every three hours during the night checking blood sugar. I have done that since the beginning. Mike hasn't done it once. Even on the weekends. His excuse is that he can't see very well without his contacts BUT he has glasses so there goes that theory.
My best friend is great but she is so busy herself with her three kids that I don't really feel like I can mention anything to her because, well, she doesn't get it. She was blessed with three perfectly healthy kids and I don't want to be Debby Downer when I do get the chance to talk to her.
The one person that I could talk to was my boss' wife. Now that I am no longer working I'm finding it longer and longer between conversations. I don't blame her. She's in her 60's and busy enjoying the life she now has and the freedom that comes with it. I think they will be moving soon to Florida so it's not like I'm ever really going to be able to see her again anyway.
The one person I wish I could talk to is my mom but frankly it's just not possible. I don't know if it's she doesn't care or if she just doesn't want to believe what it going on. She actually had the nerve the other day to tell me that to her it feels like I have taken custody of MY kids from her! She is referring to the fact that she used to babysit the kids for me when I worked. Granted, she did have them a lot BUT I never worked full-time. For a while it was 3 days a week, then it went to a 3/4 split and then I worked 4 days a week but only 3 weeks a month and then I would get a week off. I was so flabbergasted I didn't know what to say. Considering the fact that she never listened to what I wanted for my kids (diet, sunscreen etc) and now she has such a hard time saying no to them it's hard for me to even be over there especially when it comes to Carson because when I quit working it too me weeks to get him off of drinking Coke. He would bring me can after can out of my fridge asking for it. I finally got smart and started leaving it in the garage where he couldn't reach it. I would give him a little in a cup at the beginning because I figured he was having caffeine withdrawals and it would be easier to wean him off little by little. Now that he is diabetic I can't have him at her house trying to drink from her cup and her turning the other way.
Tomorrow Carson has two appointments at Children's. One is to see his nurse practitioner and the other is with a social worker. I really don't want to spill my guts to a state mandated worker but it may come to that. Maybe they can give me some coping strategies that will work. I still wish this was all a dream but I know it's not. Each day is so different with him. Some days he's great with sugar checks and other days I have to hold him down. Tonight he tried to rip the needle out of my hand after I had already stuck him in the leg.
I'm sure if I could sleep through the night for a few nights in a row I would probably feel a lot better but they just changed his Lantus dose again and gave me strict instructions to check it every 3 hours. I had been slipping and letting it go to 4 or 4.5. I would set my alarm for the 3 hours and then either sleep through it or hit snooze for over an hour before I'd wake up and realize what I was doing. I have even been putting it across the room and I'm still figuring out how to sleep walk to the alarm just to hit snooze for another 9 minutes, which then turns to 60-75!
So I'm off for another sugar check. Crossing my fingers it's within range. Then I can go to bed for my 3 hours and then back at it again later....
XX
Cat problems
This past week has been so stressful for me. Last Monday Carson had school and then Tuesday all hell broke loose. My cat Tink who we've had for 13 years threw up on the floor Tuesday about 6pm. We put her out back and then I left to take Baylee to dance class. When we got back I asked Mike if he had let her back in and he said no. Apparently she hadn't come back to the door so he forgot that she was even out. That right there is weird because she HATES to be outside. I went out to look for her and found her up underneath my outdoor table practically screaming. I thought that she was just upset/scared from being out in the dark but when I brought her inside she was acting really weird. First she went and hid behind a chair and then when I got her out her whole body went stiff and she fell over onto her side. After that she went into very violent seizures. All four limbs were flying all over the place and she was howling. It was so scary. After about an hour she had calmed down and went to sleep. My sister has a dog with epilepsy so I knew to just make sure she was safe with her surrounding and just giver her space. You can actually do more damage trying to contain her during a seizure.
It was so upsetting to see. I thought maybe she was just so scared from being outside that it made her seize. I got Carson to bed and when I came out she was seizing again. This time I thought she was dying. Her body was so stiff, no flailing and her breathing was very shallow and very spaced out. She would take a gasping breath and then not breathe again for about 30 seconds. I have had many animals in my life and I have never seen anything like this before. But also having this many animals I know that 13 is about when cats can start to go downhill and die. I thought that her organs were just shutting down and it was her time to go.
I stayed up with her until 3 am, holding her, petting her, (bawling), and telling her good-bye. I wrote Mike a note telling him where she was and that she would probably be dead by the time he got up for work in a couple of hours and just to leave her and not let the dogs mess with her.
When I got up the next morning (at 6 am) I saw that Mike had texted me and told me that not only was Tink alive, she was doing great! He had covered her with a towel to keep her warm. I couldn't believe it. I ran out to where she was and sure enough she was alive and alert. So much different from the way she was when I had gone to bed 3 hours before.
I got Baylee up and ready for school. By the time we got back out to the living room again she was seizing again. She had pooped and peed all over herself. It was awful. Baylee was so upset to see what Tink was going through. I promised her that I was taking her to the vet as soon as they opened. I called our vet and of course they were closed for the day so I found the next closest one and called to see if they would see her. I hurried to wake Carson and get him fed and his insulin in him. I put Tink in a box and drove to the vet.
As soon as I pulled into the parking lot one of the techs came to the car and grabbed the box out of the front seat. She took one look at Tink and rushed her to the back. When she came back out to ask what happened I was crying so hard I couldn't even talk. She handed me a questionnaire and told me to fill it out. It was more of a timeline than anything. I filled out what I could and waited. I was holding Carson in my arms and he kept motioning to the door they had rushed Tink through. I just kept telling him that the kitty was sick and she was at the doctor. He so sweetly took my head in his hands and kissed me on the forehead. He then wrapped his arms around my neck and hugged me until they came back out. It's amazing to me how supportive he could be for me in that situation.
After about ten minutes they came out and told me that they had medicated her to stop the seizures. They wanted to do blood work and keep her to figure out what was going on. I signed the forms and left with Carson.
To keep a long story short Tink was at the vet for 2 days. They told me that she either had a brain tumor or a cat encephalitis. The vet kept telling me that she wouldn't be normal again. She had brain damage and was blind and could barely walk. They told me that her blood sugar was very low and her white cell count was high. Infection or an insulin producing tumor that would make it difficult to keep her sugar up. Once she was 'stable' she told me that I could take her home and make her as comfortable as possible or I could put her down.
I went to the vet knowing in my head that I was probably going to be bringing home a corpse. When I got there they brought Tink out and placed her in my arms. She immediately started snuggling my neck and purred. After telling me that she had brain damage I was expecting her to not have a clue who I was. I decided there that I wasn't going to give up on her that easily. I decided to take her home. They put her on a course of Prednisone in case it was encephalitis and it would help with the swelling in her brain.
It's now been 5 days since she's been home. She is now walking without any problems and while she is 'blind' she still seems to be able to see shapes/movement or something. I can't believe we almost put her down. The stress of everything that has gone on with Carson has now been compounded by having to take extra care of my now blind cat. For the first few days we had to take her to the litter box, water dish, food dish etc. Now she is getting along much better. I guess it's possible she will go downhill again but I am optimistic at this point. I now have a special-needs cat to go along with my special-needs child.
I don't know how much more stress I can handle at this point though. I have an eye that has been twitching for a couple of days (lol) and I'm pretty sure I've spent all of my miracles for the next 100 years or so. I know there are some people who would say it's just a cat but she's not to me. She's one of my fur babies and I love her just as much.
XX
It was so upsetting to see. I thought maybe she was just so scared from being outside that it made her seize. I got Carson to bed and when I came out she was seizing again. This time I thought she was dying. Her body was so stiff, no flailing and her breathing was very shallow and very spaced out. She would take a gasping breath and then not breathe again for about 30 seconds. I have had many animals in my life and I have never seen anything like this before. But also having this many animals I know that 13 is about when cats can start to go downhill and die. I thought that her organs were just shutting down and it was her time to go.
I stayed up with her until 3 am, holding her, petting her, (bawling), and telling her good-bye. I wrote Mike a note telling him where she was and that she would probably be dead by the time he got up for work in a couple of hours and just to leave her and not let the dogs mess with her.
When I got up the next morning (at 6 am) I saw that Mike had texted me and told me that not only was Tink alive, she was doing great! He had covered her with a towel to keep her warm. I couldn't believe it. I ran out to where she was and sure enough she was alive and alert. So much different from the way she was when I had gone to bed 3 hours before.
I got Baylee up and ready for school. By the time we got back out to the living room again she was seizing again. She had pooped and peed all over herself. It was awful. Baylee was so upset to see what Tink was going through. I promised her that I was taking her to the vet as soon as they opened. I called our vet and of course they were closed for the day so I found the next closest one and called to see if they would see her. I hurried to wake Carson and get him fed and his insulin in him. I put Tink in a box and drove to the vet.
As soon as I pulled into the parking lot one of the techs came to the car and grabbed the box out of the front seat. She took one look at Tink and rushed her to the back. When she came back out to ask what happened I was crying so hard I couldn't even talk. She handed me a questionnaire and told me to fill it out. It was more of a timeline than anything. I filled out what I could and waited. I was holding Carson in my arms and he kept motioning to the door they had rushed Tink through. I just kept telling him that the kitty was sick and she was at the doctor. He so sweetly took my head in his hands and kissed me on the forehead. He then wrapped his arms around my neck and hugged me until they came back out. It's amazing to me how supportive he could be for me in that situation.
After about ten minutes they came out and told me that they had medicated her to stop the seizures. They wanted to do blood work and keep her to figure out what was going on. I signed the forms and left with Carson.
To keep a long story short Tink was at the vet for 2 days. They told me that she either had a brain tumor or a cat encephalitis. The vet kept telling me that she wouldn't be normal again. She had brain damage and was blind and could barely walk. They told me that her blood sugar was very low and her white cell count was high. Infection or an insulin producing tumor that would make it difficult to keep her sugar up. Once she was 'stable' she told me that I could take her home and make her as comfortable as possible or I could put her down.
I went to the vet knowing in my head that I was probably going to be bringing home a corpse. When I got there they brought Tink out and placed her in my arms. She immediately started snuggling my neck and purred. After telling me that she had brain damage I was expecting her to not have a clue who I was. I decided there that I wasn't going to give up on her that easily. I decided to take her home. They put her on a course of Prednisone in case it was encephalitis and it would help with the swelling in her brain.
It's now been 5 days since she's been home. She is now walking without any problems and while she is 'blind' she still seems to be able to see shapes/movement or something. I can't believe we almost put her down. The stress of everything that has gone on with Carson has now been compounded by having to take extra care of my now blind cat. For the first few days we had to take her to the litter box, water dish, food dish etc. Now she is getting along much better. I guess it's possible she will go downhill again but I am optimistic at this point. I now have a special-needs cat to go along with my special-needs child.
I don't know how much more stress I can handle at this point though. I have an eye that has been twitching for a couple of days (lol) and I'm pretty sure I've spent all of my miracles for the next 100 years or so. I know there are some people who would say it's just a cat but she's not to me. She's one of my fur babies and I love her just as much.
XX
School: Day 15
It's still hard to believe we're in January already. Today Carson went to school for the first time in a month. I honestly almost forgot what time we were supposed to be there. I made sure that he was fed and medicated about an hour before we were supposed to be there that way I could check his sugar at the end of the class and see if he needed to eat before we got Baylee off the bus.
When I pulled into the parking lot Patty was getting something out of her car. She met me at my parking space and immediately hugged me. I guess all of the teachers had been texting back and forth during our hospital stay keeping everyone up to date with what was going on with Carson.
She told me that she had a student that would be working with her and wondered how Carson would do with her. I told her after what he had gone through in the hospital I thought as long as she didn't come at him with a needle he'd probably be okay. We signed in and got to work. Patty had Carson start out on the stairs. She had beanie babies at the top and the student (I can't remember her name!) stood at the bottom with a bag to put them in. He did great. A few times he got a little over-zealous and would take two at a time but other than that he did so good. He was reciprocal on the way up and started out with two feet on each step on the way down but once he warmed up a bit he didn't seem to have any trouble going down. Patty stayed next to him in case he lost his balance. I bet he did this 10 or so times before you could see that he needed a break. He was constantly looking for me to make sure that I hadn't left him but once I would reassure him he would go right back to climbing.
His black eye was a good conversation starter with everyone. They all joked with me that I had sucker punched him in the eye but they all knew that I really had nothing to do with it. It made me feel better seeing the sense of humor about the whole situation considering how bad I still felt about the fact that I wasn't fast enough to catch him in the first place.
After the stairs we went to Amber's classroom and she was so happy to see him up and happy. The last time she had seen him was in the hospital when she and Amy came to visit. Carson was still pretty out of it at that point and he didn't look good at all. At least now (if you could look past the eye) he looked like himself again. When Jen came in she scooped him up into her arms and just hugged him. I think he was as happy to see her as she was to see him.
The school part went better than I could've ever expected. Carson sat on his little red bean ball and paid attention the whole time. He would look over every so often to see if I was still in my chair but he was really into it. I've noticed over the past few days that he is really interested in the ASL alphabet. When they sang the days of the week song (to the Adam's Family theme song) they also signed the days. He picked up on the fact that each day was just the corresponding letter of the alphabet in sign language. His little eyes lit up and he was making little noises as he looked at me and was flicking a little finger towards Amber in the front of the class. He didn't even really seem to mind that the student was right behind him holding the ball. He was able to tell them that it was rainy today when she asked about the weather (he pulled the rainy picture off of a picture board) and even showed Amber that the weather panda needed a rain coat and shoes. MY Carson was back.
LaQuita read a story about winter clothes and he was engaged in the story the whole time. He kind-of meandered around the mat where all the teachers were but he paid attention. He even went up to the book and pointed along with the words that she was reading. It was interesting watching Amber look at Carson and study him as he was bouncing on his ball and squealing and overall having a great time. I don't know if it was relief or if she was just paying attention to him to gauge how he was feeling but it was a good feeling for me to see that she really cares. Carson kept reaching over to the other little boy in the class to try to kiss him on the forehead. The little guy was pretty creeped out by it and would move a little out of Carson's reach. It was funny and sad at the same time.
After the book the boys split up and Carson went with Patty and the new girl and the other little boy went to speech. I honestly didn't pay too close of attention to what they were doing because I was talking to Jen about the ordeal and how we ended up at the hospital. When I showed her the picture of Carson at his worst I thought she was going to cry. I know that it is a shocking photo to begin with but again it's one of those things when you actually see how much these girls care about him.
After jumping off the stool a few times he came to Jen and they worked on cutting with scissors and connecting dots to make squares. He would do it but he really had his own agenda. She was telling him to connect the dots (1,2,3,4) and showing him which dots to connect. He then drew:
1 2
3 4
It was hilarious. It was what she had told him. He even wrote the numbers exactly where she had pointed to on the paper just instead of connecting the dots he made his own with the numbers.
He went back to Patty and I showed Jen what he had been working on while we were out of school for so long. His newest iPad app: itrace. It's hard. Honestly, even I have trouble doing it. Luckily it had a glossary of all the previous work he had done and even broke it down by skill level and date. She was stunned. It's words like barnyard and yacht etc. (Yacht is his new handle that he goes by now on all of his apps that require a profile to play them). She then posed a question. Do we really CARE that he doesn't hold a pen the correct way to write considering the technological age we are in and he can type and write with his fingertips? The short answer? NO. Even Amber agreed. Her next question was: Is there ever going to come a time in his lifetime where using scissors is going to make or break him? Our combined answer? NO. Those were his IEP goals for OT. Jen told us that if those aren't his goals anymore we needed to change them so that she could continue to work with him. I pondered for a second and we both came up with his new OT goal at the same time. Getting dressed. He can't button or zip / unzip anything. She said that she would amend the IEP and I could sign off on it next week and that is what we will start working on. Something that WILL help him in the long run. It's a shame that it came to us with only 4 months left but hey, it's better than nothing. (During this conversation Carson was bowling).
LaQuita was almost done with the other little boy in the class so to kill a few extra minutes Jen pulled Carson over to the huge easel with paper as big as me. She handed him a marker and let him go to town. He wrote all over the paper. She told him she was glad that he was feeling better and he wrote 'glad' on the paper. I asked him what his name was this week and he wrote 'yacht'. He's such a crack-up. He then went back to the table and wanted to play with this letter play-doh. It has a very rubbery feeling to it that usually makes him gag but for some reason he was really into playing with it.
When it was LaQuita's turn with Carson Jen stayed to help. They had him match pictures that had been cut out to their counterparts on the page in front of him. 'What cuts your grass?" lawnmower. "Who gives you milk?" cow. He did great. He honestly did better that what I thought he would. They worked on the iPad for a bit and then it was time to go.
This past Monday was a holiday so we didn't have school and this coming Monday the teachers have a class to attend so we may not go then either. Amber did invite us to group physical therapy on Wednesday at 9 so we may go to that next week. Carson has two doctor's appointments tomorrow morning so we won't be able to go then.
XX
When I pulled into the parking lot Patty was getting something out of her car. She met me at my parking space and immediately hugged me. I guess all of the teachers had been texting back and forth during our hospital stay keeping everyone up to date with what was going on with Carson.
She told me that she had a student that would be working with her and wondered how Carson would do with her. I told her after what he had gone through in the hospital I thought as long as she didn't come at him with a needle he'd probably be okay. We signed in and got to work. Patty had Carson start out on the stairs. She had beanie babies at the top and the student (I can't remember her name!) stood at the bottom with a bag to put them in. He did great. A few times he got a little over-zealous and would take two at a time but other than that he did so good. He was reciprocal on the way up and started out with two feet on each step on the way down but once he warmed up a bit he didn't seem to have any trouble going down. Patty stayed next to him in case he lost his balance. I bet he did this 10 or so times before you could see that he needed a break. He was constantly looking for me to make sure that I hadn't left him but once I would reassure him he would go right back to climbing.
His black eye was a good conversation starter with everyone. They all joked with me that I had sucker punched him in the eye but they all knew that I really had nothing to do with it. It made me feel better seeing the sense of humor about the whole situation considering how bad I still felt about the fact that I wasn't fast enough to catch him in the first place.
After the stairs we went to Amber's classroom and she was so happy to see him up and happy. The last time she had seen him was in the hospital when she and Amy came to visit. Carson was still pretty out of it at that point and he didn't look good at all. At least now (if you could look past the eye) he looked like himself again. When Jen came in she scooped him up into her arms and just hugged him. I think he was as happy to see her as she was to see him.
The school part went better than I could've ever expected. Carson sat on his little red bean ball and paid attention the whole time. He would look over every so often to see if I was still in my chair but he was really into it. I've noticed over the past few days that he is really interested in the ASL alphabet. When they sang the days of the week song (to the Adam's Family theme song) they also signed the days. He picked up on the fact that each day was just the corresponding letter of the alphabet in sign language. His little eyes lit up and he was making little noises as he looked at me and was flicking a little finger towards Amber in the front of the class. He didn't even really seem to mind that the student was right behind him holding the ball. He was able to tell them that it was rainy today when she asked about the weather (he pulled the rainy picture off of a picture board) and even showed Amber that the weather panda needed a rain coat and shoes. MY Carson was back.
LaQuita read a story about winter clothes and he was engaged in the story the whole time. He kind-of meandered around the mat where all the teachers were but he paid attention. He even went up to the book and pointed along with the words that she was reading. It was interesting watching Amber look at Carson and study him as he was bouncing on his ball and squealing and overall having a great time. I don't know if it was relief or if she was just paying attention to him to gauge how he was feeling but it was a good feeling for me to see that she really cares. Carson kept reaching over to the other little boy in the class to try to kiss him on the forehead. The little guy was pretty creeped out by it and would move a little out of Carson's reach. It was funny and sad at the same time.
After the book the boys split up and Carson went with Patty and the new girl and the other little boy went to speech. I honestly didn't pay too close of attention to what they were doing because I was talking to Jen about the ordeal and how we ended up at the hospital. When I showed her the picture of Carson at his worst I thought she was going to cry. I know that it is a shocking photo to begin with but again it's one of those things when you actually see how much these girls care about him.
After jumping off the stool a few times he came to Jen and they worked on cutting with scissors and connecting dots to make squares. He would do it but he really had his own agenda. She was telling him to connect the dots (1,2,3,4) and showing him which dots to connect. He then drew:
1 2
3 4
It was hilarious. It was what she had told him. He even wrote the numbers exactly where she had pointed to on the paper just instead of connecting the dots he made his own with the numbers.
He went back to Patty and I showed Jen what he had been working on while we were out of school for so long. His newest iPad app: itrace. It's hard. Honestly, even I have trouble doing it. Luckily it had a glossary of all the previous work he had done and even broke it down by skill level and date. She was stunned. It's words like barnyard and yacht etc. (Yacht is his new handle that he goes by now on all of his apps that require a profile to play them). She then posed a question. Do we really CARE that he doesn't hold a pen the correct way to write considering the technological age we are in and he can type and write with his fingertips? The short answer? NO. Even Amber agreed. Her next question was: Is there ever going to come a time in his lifetime where using scissors is going to make or break him? Our combined answer? NO. Those were his IEP goals for OT. Jen told us that if those aren't his goals anymore we needed to change them so that she could continue to work with him. I pondered for a second and we both came up with his new OT goal at the same time. Getting dressed. He can't button or zip / unzip anything. She said that she would amend the IEP and I could sign off on it next week and that is what we will start working on. Something that WILL help him in the long run. It's a shame that it came to us with only 4 months left but hey, it's better than nothing. (During this conversation Carson was bowling).
LaQuita was almost done with the other little boy in the class so to kill a few extra minutes Jen pulled Carson over to the huge easel with paper as big as me. She handed him a marker and let him go to town. He wrote all over the paper. She told him she was glad that he was feeling better and he wrote 'glad' on the paper. I asked him what his name was this week and he wrote 'yacht'. He's such a crack-up. He then went back to the table and wanted to play with this letter play-doh. It has a very rubbery feeling to it that usually makes him gag but for some reason he was really into playing with it.
When it was LaQuita's turn with Carson Jen stayed to help. They had him match pictures that had been cut out to their counterparts on the page in front of him. 'What cuts your grass?" lawnmower. "Who gives you milk?" cow. He did great. He honestly did better that what I thought he would. They worked on the iPad for a bit and then it was time to go.
This past Monday was a holiday so we didn't have school and this coming Monday the teachers have a class to attend so we may not go then either. Amber did invite us to group physical therapy on Wednesday at 9 so we may go to that next week. Carson has two doctor's appointments tomorrow morning so we won't be able to go then.
XX
Monday, January 13, 2014
History
It's Monday. I'm feeling a little better today and the pity party is over for now. I'm sure it won't be the last time that I get overwhelmed with the way things are going but I just have to wade through it. I think the hard thing for me has been that our family has been through so much already with many things that I just don't understand why we can't seem to catch a break.
Mike and I met in January 2000. We were engaged in June of the same year and married in June of 2001. January 2002 our lives changed forever. Mike was involved in an industrial accident that could've killed him. He was on a scissor lift 20 feet in the air when it broke and fell over. Mike's partner jumped before it hit the ground and ended up with a broken arm, concussion and cut on his head. Mike rode it down to the ground and wasn't so lucky. He was in the hospital for a week with a broken pelvis, hip, foot and hand. His pubis bone was crushed and worst of all he has a compression fracture of the L2 vertebra in his back. I was 20 and he was 24. Our lives were never the same after that accident. Mike changed. I changed.
For 6 months Mike slept on the couch in our living room because he was unable to climb the stairs to our bedroom. Our dining room became his bathroom as he was confined to one floor of our house and it only contained the kitchen living room and dining room. I had to bathe him in the kitchen with a kiddie pool and a chair. I cleaned out his potty chair and go him dressed etc. It was really the first time in my life that I had to be self-less and put someone else's needs in front of mine. Being so young and being the youngest child in my house growing up this was hard for me. I had never taken care of anyone else before. No diapers to change or babies to feed etc. I was so used to being the one who was taken care of. I am honest when I say that it was rough and I didn't handle it very well. Mike was depressed and angry. He was moody all the time and it was such a change from who he had been when we fell in love. He was in a torso cast that came off when he went to bed and he used a walker to get around. After 3 months he was able to switch to crutches which he used for another month or so until his hip was healed enough to hold his weight.
After 6 months I made him go back to work. He was always home alone in the dark. He never opened the blinds turned on the tv or went out onto the porch. He just sat there. I was afraid he was going to commit suicide so I pushed for him to take the exam to get back to work. I thought it would be good for him to get out of his slump and get back to 'normal'. He took the test and passed with strict restrictions. He wasn't allowed to lift more than 10 pounds or be on his feet for more than 30 minutes at a time. His work abided by the rules for a while but then they started making him lift heavier and heavier things and working for more than 30 minutes at a time on his feet. It has been really hard on his body.
When I was 6 months pregnant with Baylee Mike found out that he is a type 1 diabetic. He started getting really severe cramps in his legs and was thirsty all of the time. When he would sweat it smelled sweet. I remembered seeing an episode of The Twilight Zone of all things about a girl who didn't know she was diabetic but a "bad guy" did because she was so thirsty. Weird how those things stay etched in your mind. Anyway, Mike went and it was confirmed. We have always had a suspicion that it had something to do with his accident but there is no way to prove it. So there was this new onset diabetes to worry about and learn about right when we were about to have our first child and were already so worried that we wouldn't know how to take care of her.
Three and a half years later Carson came along. From day one it has always been something with him. More therapy sessions and doctor's appointments than I could possibly count.
In 2010 things got so bad with Mike's back it required surgery. He was going numb in the legs and had become incontinent because he could no longer feel the urge to go. They fused his L5-S1 together and stabilized it with a cage that has cadaver bone in it. Totally gross when you think about it but it helped. It was 6 more months at home. By this time we have two kids that even though Mike is home, he can't watch. So every day they had to get up early and be out the door at 6:30 to go to my mother's house. Sometimes they would be there until 6:30 at night.
By the end of 2010 we got Carson's first official diagnosis, the 15q24 microdeletion syndrome. That opened a lot of doors for Carson in the sense of therapy options and support through the county financially (for diapers and wipes). He began going to 'preschool' the day before he turned 3.
Mike changed jobs in 2011 and that has been one of the better things to happen to our family. He is doing somewhat of the same job but his truck has a crane to do the heavy lifting and he is off on weekends as long as there aren't any emergency calls.
Carson's second diagnosis of Duane Syndrome of course came in November of 2013 and then the diabetes on Christmas. I just wish that we could catch a break. I am so glad that I am not working anymore so that I am able to take care of Carson but it's taxing and exhausting.
Carson cannot dress himself, bathe or use a toilet. He can only hand feed himself and can't use utensils. He just now learned how to drink from a real cup but he doesn't have the concept that it has an open top and will spill if not placed right on a hard surface. His walk is unsteady and he staggers like he is drunk. He doesn't play or watch tv. His iPad and the vacuum are his only friends. Because he doesn't speak it is very hard to carry on a conversation even though I KNOW he understands much more than anyone will ever give him credit for. And now I have to check his sugar, limit his food, count every carb that passes through his lips and then stab him 30 minutes afterwards. It's so unfair.
His eyes have failed him. His ears have failed him. His fingers, his smooth muscles, his skeletal muscles, his brain, his nerves, and his senses have all failed him. We don't know if he can smell or taste either. And now his pancreas has failed him. We know that we will have to continue to monitor his heart and his kidneys. I just wish that he could have something go right for a change. He is such a sweet happy kid and it just seems so unfair. He will never lie or cheat or steal. He is pure and honest and everything that you could ever wish for in a child.
Baylee of course is feeling this from a whole different perspective. She already has had to do so much for Carson, to give up so much for him too. I don't know what it must feel like to be her and have so much attention given to someone else in the family. We try to make it fair. I swear we do. It's just HARD. I tried to get her to read the pamphlets they sent us home with from the hospital but it's almost like she doesn't even want to acknowledge anything is going on. Maybe one day she will just break down like I did and it will be what she needs. Maybe we just need a girl day. Just go and hang out and eat as much junk food as we can until we get sick since the boys obviously can't do that anymore.
Well, we're off to school. This is going to be interesting.
And as a little note: Type 1 diabetes is NOT genetic. Mike did not pass this on to Carson. It just happens to be that they both have it. TRUST ME. We asked. :)
XX
Mike and I met in January 2000. We were engaged in June of the same year and married in June of 2001. January 2002 our lives changed forever. Mike was involved in an industrial accident that could've killed him. He was on a scissor lift 20 feet in the air when it broke and fell over. Mike's partner jumped before it hit the ground and ended up with a broken arm, concussion and cut on his head. Mike rode it down to the ground and wasn't so lucky. He was in the hospital for a week with a broken pelvis, hip, foot and hand. His pubis bone was crushed and worst of all he has a compression fracture of the L2 vertebra in his back. I was 20 and he was 24. Our lives were never the same after that accident. Mike changed. I changed.
For 6 months Mike slept on the couch in our living room because he was unable to climb the stairs to our bedroom. Our dining room became his bathroom as he was confined to one floor of our house and it only contained the kitchen living room and dining room. I had to bathe him in the kitchen with a kiddie pool and a chair. I cleaned out his potty chair and go him dressed etc. It was really the first time in my life that I had to be self-less and put someone else's needs in front of mine. Being so young and being the youngest child in my house growing up this was hard for me. I had never taken care of anyone else before. No diapers to change or babies to feed etc. I was so used to being the one who was taken care of. I am honest when I say that it was rough and I didn't handle it very well. Mike was depressed and angry. He was moody all the time and it was such a change from who he had been when we fell in love. He was in a torso cast that came off when he went to bed and he used a walker to get around. After 3 months he was able to switch to crutches which he used for another month or so until his hip was healed enough to hold his weight.
After 6 months I made him go back to work. He was always home alone in the dark. He never opened the blinds turned on the tv or went out onto the porch. He just sat there. I was afraid he was going to commit suicide so I pushed for him to take the exam to get back to work. I thought it would be good for him to get out of his slump and get back to 'normal'. He took the test and passed with strict restrictions. He wasn't allowed to lift more than 10 pounds or be on his feet for more than 30 minutes at a time. His work abided by the rules for a while but then they started making him lift heavier and heavier things and working for more than 30 minutes at a time on his feet. It has been really hard on his body.
When I was 6 months pregnant with Baylee Mike found out that he is a type 1 diabetic. He started getting really severe cramps in his legs and was thirsty all of the time. When he would sweat it smelled sweet. I remembered seeing an episode of The Twilight Zone of all things about a girl who didn't know she was diabetic but a "bad guy" did because she was so thirsty. Weird how those things stay etched in your mind. Anyway, Mike went and it was confirmed. We have always had a suspicion that it had something to do with his accident but there is no way to prove it. So there was this new onset diabetes to worry about and learn about right when we were about to have our first child and were already so worried that we wouldn't know how to take care of her.
Three and a half years later Carson came along. From day one it has always been something with him. More therapy sessions and doctor's appointments than I could possibly count.
In 2010 things got so bad with Mike's back it required surgery. He was going numb in the legs and had become incontinent because he could no longer feel the urge to go. They fused his L5-S1 together and stabilized it with a cage that has cadaver bone in it. Totally gross when you think about it but it helped. It was 6 more months at home. By this time we have two kids that even though Mike is home, he can't watch. So every day they had to get up early and be out the door at 6:30 to go to my mother's house. Sometimes they would be there until 6:30 at night.
By the end of 2010 we got Carson's first official diagnosis, the 15q24 microdeletion syndrome. That opened a lot of doors for Carson in the sense of therapy options and support through the county financially (for diapers and wipes). He began going to 'preschool' the day before he turned 3.
Mike changed jobs in 2011 and that has been one of the better things to happen to our family. He is doing somewhat of the same job but his truck has a crane to do the heavy lifting and he is off on weekends as long as there aren't any emergency calls.
Carson's second diagnosis of Duane Syndrome of course came in November of 2013 and then the diabetes on Christmas. I just wish that we could catch a break. I am so glad that I am not working anymore so that I am able to take care of Carson but it's taxing and exhausting.
Carson cannot dress himself, bathe or use a toilet. He can only hand feed himself and can't use utensils. He just now learned how to drink from a real cup but he doesn't have the concept that it has an open top and will spill if not placed right on a hard surface. His walk is unsteady and he staggers like he is drunk. He doesn't play or watch tv. His iPad and the vacuum are his only friends. Because he doesn't speak it is very hard to carry on a conversation even though I KNOW he understands much more than anyone will ever give him credit for. And now I have to check his sugar, limit his food, count every carb that passes through his lips and then stab him 30 minutes afterwards. It's so unfair.
His eyes have failed him. His ears have failed him. His fingers, his smooth muscles, his skeletal muscles, his brain, his nerves, and his senses have all failed him. We don't know if he can smell or taste either. And now his pancreas has failed him. We know that we will have to continue to monitor his heart and his kidneys. I just wish that he could have something go right for a change. He is such a sweet happy kid and it just seems so unfair. He will never lie or cheat or steal. He is pure and honest and everything that you could ever wish for in a child.
Baylee of course is feeling this from a whole different perspective. She already has had to do so much for Carson, to give up so much for him too. I don't know what it must feel like to be her and have so much attention given to someone else in the family. We try to make it fair. I swear we do. It's just HARD. I tried to get her to read the pamphlets they sent us home with from the hospital but it's almost like she doesn't even want to acknowledge anything is going on. Maybe one day she will just break down like I did and it will be what she needs. Maybe we just need a girl day. Just go and hang out and eat as much junk food as we can until we get sick since the boys obviously can't do that anymore.
Well, we're off to school. This is going to be interesting.
And as a little note: Type 1 diabetes is NOT genetic. Mike did not pass this on to Carson. It just happens to be that they both have it. TRUST ME. We asked. :)
XX
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