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
Monday, February 10, 2014
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
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