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
Monday, January 27, 2014
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. :)
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