Dylan's Story
Dylan is diabetic and on Dec 14, 2009 had complications from a cold and experienced many strokes on his brain stem. Dylan was in a coma for many weeks and is now in rehab. Read the entries below to keep up to date with his progress
Sunday, September 25, 2011
Friday, August 26, 2011
Monday, June 6, 2011
Sorry it’s been a while since we’ve done an update on Dylan. Life has been so busy lately.
He’s doing really well. He turned 15 on May 25th, we had a little get together at our house, kept it pretty low-key so he didn’t get overwhelmed. He seemed to enjoy himself! We made his favorite, home-made pizza.
He is now officially in the 10th grade. We spoke to the school a few weeks ago and he is all registered for next year and all the same services are set up for him already, which is fabulous as we really had to fight hard for what was implemented over the last few months! He will continue to have daily therapy sessions, with speech, physical and occupational therapy at school, he will continue to have front door service with the bus to/from school and he will continue to get the aid of a one-to-one to assist him daily in classes I am so glad that all of that transferred over, what a headache it was to get it all set up.
Dylan’s summer is starting off really well, he is currently getting after school care from his favorite nurse on a daily basis. The insurance company finally ok’d his nurse to pull full day shifts while school is out for the summer, that was like pulling teeth!!! Anyway he’s all set up with that and he really likes her so it worked out well.
He’s also been in to see his endo and his gastro doctors over the last few weeks. It seems like we are almost there with getting his blood sugar levels fixed. He’s a teen-ager though so it makes it hard to keep his sugar normal when his hormones are rioting. They are pleased with where he’s been though for the last few months! Dan took Dylan to the gastro last week and they are scheduling him this week to remove the g-tube!!! Woohooo!!! We are very excited about that!!! It should be a simple surgery that may require one to two stitches, if that. We are thrilled that it will be gone!! He’s been eating solid foods for over a year now. Dan and I have been working with him to slow down when he eats and he’s able to eat pretty much everything at this point. We just have him take small bites and eat slowly and he’s fine. He is also drinking un-thickened drinks a good portion of the time.
He’s doing really well with speech too, he’s loving singing songs to the radio, and it seems to help him speak in clearer and longer sentences. We let him listen to the radio whenever we go somewhere and it’s usually on when we are at home too.
Dylan is now walking over 200+ feet a day with his walker and we are planning on doing more than that soon ;) he’s also working on his balance and his right hand is getting used more every day! He continues to improve daily and is doing WONDERFUL!!!
Thank you again for all your thoughts, prayers and continued support! - Keri Skay
He’s doing really well. He turned 15 on May 25th, we had a little get together at our house, kept it pretty low-key so he didn’t get overwhelmed. He seemed to enjoy himself! We made his favorite, home-made pizza.
He is now officially in the 10th grade. We spoke to the school a few weeks ago and he is all registered for next year and all the same services are set up for him already, which is fabulous as we really had to fight hard for what was implemented over the last few months! He will continue to have daily therapy sessions, with speech, physical and occupational therapy at school, he will continue to have front door service with the bus to/from school and he will continue to get the aid of a one-to-one to assist him daily in classes I am so glad that all of that transferred over, what a headache it was to get it all set up.
Dylan’s summer is starting off really well, he is currently getting after school care from his favorite nurse on a daily basis. The insurance company finally ok’d his nurse to pull full day shifts while school is out for the summer, that was like pulling teeth!!! Anyway he’s all set up with that and he really likes her so it worked out well.
He’s also been in to see his endo and his gastro doctors over the last few weeks. It seems like we are almost there with getting his blood sugar levels fixed. He’s a teen-ager though so it makes it hard to keep his sugar normal when his hormones are rioting. They are pleased with where he’s been though for the last few months! Dan took Dylan to the gastro last week and they are scheduling him this week to remove the g-tube!!! Woohooo!!! We are very excited about that!!! It should be a simple surgery that may require one to two stitches, if that. We are thrilled that it will be gone!! He’s been eating solid foods for over a year now. Dan and I have been working with him to slow down when he eats and he’s able to eat pretty much everything at this point. We just have him take small bites and eat slowly and he’s fine. He is also drinking un-thickened drinks a good portion of the time.
He’s doing really well with speech too, he’s loving singing songs to the radio, and it seems to help him speak in clearer and longer sentences. We let him listen to the radio whenever we go somewhere and it’s usually on when we are at home too.
Dylan is now walking over 200+ feet a day with his walker and we are planning on doing more than that soon ;) he’s also working on his balance and his right hand is getting used more every day! He continues to improve daily and is doing WONDERFUL!!!
Thank you again for all your thoughts, prayers and continued support! - Keri Skay
Sunday, May 22, 2011
Friday, April 1, 2011
Dyl is doing really great, adjusting well to being home and enrolled in school full time. He’s in two regular classes with his friends from middle school and has five assisted classes. He’s getting good grades in all his classes and is starting to do therapy at school as well. He is almost walking 100 feet at school…the physical therapist is working with him a couple times a day to get him walking and said that he’s getting stronger every time they walk!!! He is also doing speech therapy and you can totally tell the difference, we don’t let him point at things at home, we make him use his voice when he wants something and it is so much clearer when he speaks now. He also loves to sing and listen to music so he gets the speaking at that as well. He’s very vocal early in the morning and then sometimes gets a little boost after dinner too. We are thrilled with how well he’s doing with his speaking. He’s making big strides all the time. We still work with speech therapy at home by having him read and associate words on worksheets and also by having him read every day words as well. He’s improving all the time. His occupational therapist is also on board now at Santa Rita and it seems like with all the therapy that he is receiving he’s doing great! He’s toilet training and is improving sooooo much on that right now! We are very excited about that…skinny jeans here we come. Dylan is convinced he’s going to get some PINK skinny jeans when he’s out of the briefs we’ll see what happens, I’m trying to convince him that dark blue or black would look nicer.
Dylan had an eye doctor appointment recently and we got some great news…he doesn’t have diabetes in his eyes!! I didn’t realize that that could be an issue, so we are very excited that his eyes are doing good! He is less than thrilled that he is a little near sighted and has to get glasses for when he needs to see something across the room…we are going to try and find a pair of “cool” black rimmed glasses for him.
Recently we went to the Nitro Jams with his Aunt and Uncle and boy did he have a BLAST!!! It was a fun evening out and he was jazzed to see the jet-engine cars!
We are working on getting him into a summer program so that he can stay busy during the day…I’m keeping my fingers crossed that there is some kind of therapeutic summer program through parks and rec…hopefully they do have something!! I will be calling here in the next couple of days to find out about that.
Dylan is doing GREAT with his eating/swallowing too. Dan and I have started giving him more “real” food and thin liquids at home. When he’s at school we still do the pureed food and thick water, but at home we let him eat hamburgers, pizza and some other things he enjoys. It’s kind of a balancing act right now, he LOVES to eat and we have to slow him down and make sure he’s chewing everything into small enough pieces to swallow! He loves his diet dr. pepper and drinks that down in about ten seconds! We have to keep an eagle eye on him when we do that. But he’s not aspirating when we let him have those treats so we are hopeful that when they do the next swallow test at the doctor he’ll be bumped up to solid foods on a more regular basis.
We are also improving on the shower end of things…he HATES having a shower, but he’s getting really good at getting both hands up to wash his hair ( and can I tell you it’s getting LONG, we are talking rock star lengths here) and doing the shower pretty much on his own!! One of us stays in the bathroom with him for safety but he washes himself and his hair all on his own. He’s even getting that right hand up there to brush his hair by himself.
Dyl’s balance is also getting really good, he can stand without help for over a minute, sometimes he can go for three minutes!! We are working on basic balance and walking skills at home after dinner. He’s getting so strong and both his hands are also getting stronger. His after-school nurse commented last week that when he squeezes her hands the grip is stronger every day!!
We also got to see a dietician recently and as we figured Dylan is going through a growth spurt. He passed me by a long time ago and is almost taller than Dan now ;) but since he’s going through this growth spurt they want him to eat larger portions, which we were already doing and added some things to his diet to get him more protein and to make sure he stays fuller longer. They were also able to get the glucerna shakes that he is supposed to drink twice a day (and boy are they expensive) covered by the insurance!!! YAY!!! That’s a step in the right direction because we were going through those like crazy!!
I think that brings everyone up to date on the most recent things. I’m sorry that it’s been a while since I’ve updated everyone. Life is so crazy-busy right now, but we wanted to let everyone know that Dylan is doing WONDERFUL and is continuing to improve!!!
Please continue to keep him in your thoughts and prayers!! I’ll do better about updating on a more consistent basis. ~Keri
Dylan had an eye doctor appointment recently and we got some great news…he doesn’t have diabetes in his eyes!! I didn’t realize that that could be an issue, so we are very excited that his eyes are doing good! He is less than thrilled that he is a little near sighted and has to get glasses for when he needs to see something across the room…we are going to try and find a pair of “cool” black rimmed glasses for him.
Recently we went to the Nitro Jams with his Aunt and Uncle and boy did he have a BLAST!!! It was a fun evening out and he was jazzed to see the jet-engine cars!
We are working on getting him into a summer program so that he can stay busy during the day…I’m keeping my fingers crossed that there is some kind of therapeutic summer program through parks and rec…hopefully they do have something!! I will be calling here in the next couple of days to find out about that.
Dylan is doing GREAT with his eating/swallowing too. Dan and I have started giving him more “real” food and thin liquids at home. When he’s at school we still do the pureed food and thick water, but at home we let him eat hamburgers, pizza and some other things he enjoys. It’s kind of a balancing act right now, he LOVES to eat and we have to slow him down and make sure he’s chewing everything into small enough pieces to swallow! He loves his diet dr. pepper and drinks that down in about ten seconds! We have to keep an eagle eye on him when we do that. But he’s not aspirating when we let him have those treats so we are hopeful that when they do the next swallow test at the doctor he’ll be bumped up to solid foods on a more regular basis.
We are also improving on the shower end of things…he HATES having a shower, but he’s getting really good at getting both hands up to wash his hair ( and can I tell you it’s getting LONG, we are talking rock star lengths here) and doing the shower pretty much on his own!! One of us stays in the bathroom with him for safety but he washes himself and his hair all on his own. He’s even getting that right hand up there to brush his hair by himself.
Dyl’s balance is also getting really good, he can stand without help for over a minute, sometimes he can go for three minutes!! We are working on basic balance and walking skills at home after dinner. He’s getting so strong and both his hands are also getting stronger. His after-school nurse commented last week that when he squeezes her hands the grip is stronger every day!!
We also got to see a dietician recently and as we figured Dylan is going through a growth spurt. He passed me by a long time ago and is almost taller than Dan now ;) but since he’s going through this growth spurt they want him to eat larger portions, which we were already doing and added some things to his diet to get him more protein and to make sure he stays fuller longer. They were also able to get the glucerna shakes that he is supposed to drink twice a day (and boy are they expensive) covered by the insurance!!! YAY!!! That’s a step in the right direction because we were going through those like crazy!!
I think that brings everyone up to date on the most recent things. I’m sorry that it’s been a while since I’ve updated everyone. Life is so crazy-busy right now, but we wanted to let everyone know that Dylan is doing WONDERFUL and is continuing to improve!!!
Please continue to keep him in your thoughts and prayers!! I’ll do better about updating on a more consistent basis. ~Keri
Saturday, January 22, 2011
Tuesday, January 4, 2011
Dylan is home!
We are doing really well. Dylan is doing so good since he’s been home. We were so happy that he was able to come home in time for Christmas!! What a special treat for all of us! Dylan especially enjoyed the holidays, he got to see the family and friends and got to spend the day with them. He received loads of gifts and had a great day!
He’s doing really well in transitioning into a “normal” schedule at home. We have kept the same basic routine that they set up at Barrow’s. We have tweaked the times a bit for each meal as we both work and there is now a school schedule to cope with too. But for the most part he’s up by 7:30 and in bed by 9:00, which his neurologist has informed us is a good routine for him. We are very excited to get him into school, the school psychologist is working on an IEP for Dylan and there will be a CNA assigned for Dyl to stay with him all day at school to assist him with everything including, school work, getting to classes eating lunch and controlling his diabetes when we aren’t there. We should hopefully have everything in place for him to attend school by the end of this week. We were originally hoping to have him enrolled when the kids went back from winter break, but the school being closed for the holidays when Dyl was released from Barrow’s kind of threw a wrench in the process and we are still navigating the system to get him set up.
Dylan is meeting with an occupational therapist this morning to evaluate where he stands right now and to develop a therapy plan for him. From what we understand there will be therapy three times a week on an outpatient basis and I think there will be speech therapy, occupational therapy and physical therapy. The school is also supposed to do each of those therapies with him during the day. We are very excited to see what kind of progress he can make with that kind of schedule.
We have also set up various appointments to try and keep all Dylan’s care here in Tucson, we have found him a pediatrician to follow his case, we have contacted his old endocrinologist to set up a new intake appointment for him (he really likes this doctor) ;) and we are working on getting him set up with a neurologist here in town so that we don’t have to travel to Phoenix whenever he needs a checkup. I’m keeping my fingers crossed on that one, I have yet to make contact with that doctor, but I think since Dyl was a patient of his during the first phases of his DKA/Strokes he will take him again.
Dan and Dylan are planning an outing into the desert to run baja radio control cars within the next couple of weeks, Dylan is really looking forward to it! They used to go out and do that quite a bit before Dylan went into the hospital, so it’s getting back to “normal” ;) I’m excited for them.
Dylan started really walking quite well with his walker the other day, Dan had him going across the living room three revolutions and Dyl was balancing very well and able to keep his feet in a straight line. We have really been working on his balance and on basic stretching and building up the muscles in his arms and legs. Dylan has really shown a huge boost in his recovery in the time he’s been home. He’s excited to see his friends when he returns to school, although he’s not really thrilled about returning to school in general. He’s very happy to be able to spend time with the kids from his classes!
Thank you to all who stopped by to see Dyl when he returned home, it meant the world to him to see everyone!! - Keri
He’s doing really well in transitioning into a “normal” schedule at home. We have kept the same basic routine that they set up at Barrow’s. We have tweaked the times a bit for each meal as we both work and there is now a school schedule to cope with too. But for the most part he’s up by 7:30 and in bed by 9:00, which his neurologist has informed us is a good routine for him. We are very excited to get him into school, the school psychologist is working on an IEP for Dylan and there will be a CNA assigned for Dyl to stay with him all day at school to assist him with everything including, school work, getting to classes eating lunch and controlling his diabetes when we aren’t there. We should hopefully have everything in place for him to attend school by the end of this week. We were originally hoping to have him enrolled when the kids went back from winter break, but the school being closed for the holidays when Dyl was released from Barrow’s kind of threw a wrench in the process and we are still navigating the system to get him set up.
Dylan is meeting with an occupational therapist this morning to evaluate where he stands right now and to develop a therapy plan for him. From what we understand there will be therapy three times a week on an outpatient basis and I think there will be speech therapy, occupational therapy and physical therapy. The school is also supposed to do each of those therapies with him during the day. We are very excited to see what kind of progress he can make with that kind of schedule.
We have also set up various appointments to try and keep all Dylan’s care here in Tucson, we have found him a pediatrician to follow his case, we have contacted his old endocrinologist to set up a new intake appointment for him (he really likes this doctor) ;) and we are working on getting him set up with a neurologist here in town so that we don’t have to travel to Phoenix whenever he needs a checkup. I’m keeping my fingers crossed on that one, I have yet to make contact with that doctor, but I think since Dyl was a patient of his during the first phases of his DKA/Strokes he will take him again.
Dan and Dylan are planning an outing into the desert to run baja radio control cars within the next couple of weeks, Dylan is really looking forward to it! They used to go out and do that quite a bit before Dylan went into the hospital, so it’s getting back to “normal” ;) I’m excited for them.
Dylan started really walking quite well with his walker the other day, Dan had him going across the living room three revolutions and Dyl was balancing very well and able to keep his feet in a straight line. We have really been working on his balance and on basic stretching and building up the muscles in his arms and legs. Dylan has really shown a huge boost in his recovery in the time he’s been home. He’s excited to see his friends when he returns to school, although he’s not really thrilled about returning to school in general. He’s very happy to be able to spend time with the kids from his classes!
Thank you to all who stopped by to see Dyl when he returned home, it meant the world to him to see everyone!! - Keri
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