December is sooo busy for us J Dyl is coming home soon, we are headed up to Phoenix tomorrow morning before the sun rises to do another day of training with all the therapists. They are very optimistic regarding his home-based therapy and recovery J they think he will become depressed if he stays in Phoenix much longer. He’s looking forward to coming home, we are excited and a little nervous too! We are just trying to plan out the next few weeks right now J he will be enrolled at Santa Rita High School after the Winter break is over J we have to meet with the school psychologist to see what kind of help Dylan will need, but they will offer him the full day of school, which is great! We are also trying to find out about after school programs they may offer there too since Dan and I aren’t home until about 5:30 every day and school lets out quite a bit earlier than that.  - Keri

Fun at the Cardinal's Game!

When we got up to Phoenix Dylan was still awake and very excited to see us. Sherry and Garry were there and he was so excited ;)


We made it there just before the nurse gave him his clonazapam (it really makes him tired) and we were able to visit with him for about an hour on Friday night. He was very jazzed to spend time with everyone, you could tell that he was happy ;)

On Saturday we kind of lazed a bit, he didn’t have any physical therapy sessions this weekend (the physical therapist is on vacation) so we went for a walk in the park, he ate his lunch, then we went to Wal-Mart and for us to eat lunch, he really enjoyed being out and about on Saturday.
We ended up coming back to Tucson on Saturday night because Dan had a store meeting on Sunday morning at 5am. After his store meeting we drove back up to Phoenix and got Dylan ready for the Cardinal’s game...that was AWESOME!!! Miss Alice, the coach’s wife, got extra tickets for Dan and I to be able to go with Dylan. We even had sideline passes so we could watch the warm up of the teams when they first went out on the field, then we got to sit in the box seats that the coach’s family uses.

What an amazing day!! We had a great view of the field from there and it was a lot of fun just to be able to relax like that! Dylan really enjoyed himself too, he got to meet the coach, who told him that he’s heard all about Dylan from his wife!!! :o) He also got to yell and scream with the rest of the crowd when the Cardinals weren’t doing so good. I think that Sunday was the most vocal Dylan has been since December!!!! He was so happy, he was smiling the whole day and the noise didn’t bother him...Dan and I were a bit worried about the noise and it was very loud in there, they had the dome shut, but Dyl was having a blast!!! Miss Alice gave us souvenir photo albums, got the cheerleaders up into the loft to take pictures with Dylan and then got the cardinals mascot to come up and take pictures too :) Dan was able to talk to her quite a bit while we were at the game, she really cares for Dylan and is so excited that he’s doing so well, she told Dan that she has noticed such an improvement in Dylan since she’s known him too :) She really wants to stay in touch with us when Dylan leaves Hacienda too, she’s going to give us her cell phone number so we can keep her updated on his progress :)

When we got back to Hacienda after the game, traffic was horrible!!!, the NASCAR Races and the football game all ended about the same time and EVERYONE in the city of Phoenix was on I-10 when we were there :) Millie, the discharge coordinator met us in the parking lot and told us that Dylan will probably be transferred to Barrow’s today or tomorrow, they are just waiting for a bed to be available, so Dan had to sign some paperwork and we had to pack up all of Dylan’s belongings to take home.
 Let me tell you, I didn’t realize how much stuff he had in that room!!!

We took five bags full of stuff, the safe, the stuffed animals and all the pictures on the walls home...it took us three trips to get everything to the car :) Now we are just waiting for the information on the bed and he will be at Barrow’s...we don’t know how long he’ll be there or what kind of visiting hours they have yet. We have to contact a case manager there once he’s admitted. Please continue to keep Dylan in your thoughts and prayers, he’s really improving so much every day!!!!

Thank you!!! ~Keri

Santa Rita Rocks!

Friday during the day Dylan was able to attend the State Fair in Phoenix, apparently he had a wonderful time there! They allowed the kids that went to go to the petting zoo, he said he saw chickens, goats, cows and various other animals, and they allowed them to ride some rides. Dylan thoroughly enjoyed riding on the roller coaster!! They said he threw his arms up in the air and was smiling from ear to ear while he rode it! Then on the way out the aide that was with him acquired a stuffed animal for Dylan even though the game booths weren’t open yet …


Hopefully there will be pictures to come, they said they got some good ones of him.
Saturday morning when we got to Hacienda, Dylan was already up and doing physical therapy. His therapist was so thrilled when she, with Dan’s help, was able to put Dylan on the stairs and he did AWESOME!!! It’s a set of two stairs on one side with a platform in the middle and two more stairs on the other side, he did it like nobody’s business. The therapist said that usually when they start working with the stairs the patient has to put both feet on each step and repeat that all the way up the stairs, but Dylan just walked them normally, one foot on each step and away he went!!! She was so excited! We repeated this exercise multiple times on Saturday and Sunday since she had Dan there to help her if she needed him. Dylan’s normal therapy is walking on the treadmill for many, many minutes daily and working floor mat exercises or putting a ball through a basketball hoop while standing with his walker.


Saturday night we took Dylan to support his friends at their band performance! Santa Rita High School band was in Phoenix at a local high school to perform, (Santa Rita is the school Dylan is going to enroll in) and so we took him over there to see his friends. Let me tell you the smile on Dylan’s face when he saw his friends out there was bright enough to light up the entire city of Phoenix!!! He was practically dancing in his chair when he saw them. There were five friends that he knew last year in school there. They were equally excited to see him!! They told him their performance was “for him” and they even had a few minutes to visit and take pictures when they finished performing! It was so amazing to see the love/friendship/caring pouring out of these kids for Dylan! It really touched our hearts to see how much they miss him and how excited they were to spend a few minutes with him!! They were all asking when he’d be back at school and if he was going to attend Santa Rita, it was nice to be able to tell them that he would be attending there and he should be home soon.


Sunday was a relax and unwind kind of day…Dylan was feeling a little under the weather, I think, but we went over to the park, which he loves to do, and spent about forty-five minutes over there just watching the people play soccer. After he had his lunch we took him with us for our lunch at Five Guys burgers, he LOVED having some of the meat patty from my burger. He was so excited to be out and in that atmosphere! There was a lot of loud music and tons of people in there! He was also happy to go for a ride in the car, he likes to turn the radio on as loud as we’ll let him and rock out to “his” music!!


We also took him over to the Angel House, which is located on the property at Hacienda, and let him relax a bit and watch some TV with us over there, he really enjoys being outside the “hospital” environment. He seems to open up and become animated when he’s away from it!! We have decided that it’s best to have him away as much as possible when we are there on the weekends!!! We are planning all kinds of small activities for the next few weeks so he’s busy.

I am still working on getting him enrolled at Santa Rita when he comes home. The school psychologist needs to look at his evaluations from the hospital to see what we need to set up for an easy transition back into a “normal” routine. I’m keeping my fingers crossed that all goes well with that. I don’t have any new information on when he’s going to transfer to Barrows/Phoenix Children’s Hospital yet, but we should be hearing from the insurance within the next week. I’ll keep everyone posted as I find out. Thank you for all your continued support, thoughts, prayers and love!!!! It is all appreciated more than I could ever express!!! ~Keri

Here are some pictures of Dylan in his Halloween costume... sorry it has taken me so long to post them

Dylan’s doing amazing right now! We spoke to his therapists and the doctor and they have all indicated that he should be placed into intensive (4 to 8 hours) of therapy now. He’s reached all the goals that were set for him at Hacienda. He’s able to shower himself, wash his hair, brush his teeth and get ready for his day all by himself. He’s learned to transfer from his bed into his wheelchair on his own, he is able to talk, although not as much as we’d like right now, but he can speak if spoken to, he’s able to walk with the platform walker and they said he’s getting depressed being around the children who will not ever recover so it’s best for him to transfer sooner versus later. We are waiting to find out the exact dates that this will happen, but I have called the local high school to set up an IEP (individual education plan) for Dylan and get him enrolled in high school and possibly an after-school type program so that he has daily routine set up when he gets home. We are very excited to have him coming home soon…now we just have to finish prepping everything for his arrival. I have contacted TMC to see what kinds of programs and aid Dylan qualifies for when he’s back in Tucson, they have indicated that I need to contact DDD or ALTCS to find out specifically what he qualifies for, so I’m going to do that this week.


We are hopeful that his transition to intensive therapy is smooth and that he’s able to excel there like he has so far and he’ll be home quickly


There is an out-patient therapy that should provide Dylan with in-home sessions for a little while too, hopefully we’ll get all the information on his return home at least a month prior to it happening so we can get everything ready for him. I have totally cleaned out his room, got rid of all the old clothing, he was waaaay to big for it, and some of the old toys were donated to the salvation army since he’s not really going to need them now I just have to clean out his closet and he should be ready to go.
I hope you are all doing well! Thank you for your continued thoughts & prayers for Dylan!!! It means the world to all of us!! He’s doing so amazing and the power of positive thought has really helped!! - Keri

Dylan's progress lately is AMAZING!!! I think he surprises his therapists on a daily basis. We have seen him do some things we weren't aware he could do. We saw his occupational therapist, the one who teaches him how to shower, comb his hair, brush his teeth...,on Saturday morning and she had him getting out of bed and into the wheelchair with hardly any assistance from her. She said he was doing 95% of the work and she was really only there in case he lost his balance. We didn't even know he could transfer himself like that! Then he has been walking, with minimal assistance, on a platform walker, it's a walker with a brace that he can hold onto at chest level, all over the gym and downstairs. He's doing so good they want to move him to another rehab facility quicker than originally planned. Dan and I are trying to figure out what's best for Dyl right now, we were originally told that he would need 3 to 5 years of intensive therapy and it hasn't even been

one year yet... we'll see what happens. He's able to shower himself and get to and from the toiled pretty well now. They are still working on that a bit but he's doing good. His toe is waay better now, the nail is growing back and it seems to be good. He's always very excited to go outside and to the park, we've been doing that the last couple of weekends since it's finally cooling off. He likes to sit under the trees and watch the people in the park.

 

They are having a big Halloween party on Sunday, we got Dyl a costume and he's really excited to do the trunk-or-treat they have set up. His blood sugar seems to be leveling out pretty well too and his meals seem to be portioned to match the insulin he's getting for coverage he's happy because it's waaaay bigger portions than they were giving him so he's not hungry all the time and he has more energy for therapy and just the day in general. 

We are trying to get into contact with the nutritionist too so we can see what kind of meals they would want us to prepare for him when he gets home...we also have to get a ramp installed at the front door and a few other modifications to the house before he can come back home. We are hoping to start working on that sooner versus later they also have to send someone from phoenix out to inspect to make sure the house is user-friendly for Dylan before he can come home. The doorways need to be wide enough for a wheelchair and he needs to be able to access the bathroom and kitchen. I am hoping to speak to a therapist from Barrow's soon to find out exactly what kind of time-frame Dylan has when he gets there for therapy, they are saying 3 weeks and then he's released home...that seems awfully quick, but we have to find out the details. Dan is thinking that if we can keep Dyl where he is into March or April then move him to more intensive therapy after he has time to really build on the skills he's learning now that would be better. He's not voluntarily talking too much at this point, we usually have to ask him questions to get him to talk to us, and he's not walking on his own yet and they haven't gotten him totally toilet trained yet so we want to wait until all that's complete before we move him so that he's not trying to accomplish everything at once in a really short period of time. 

His right side really seems to be coming on well too, they have a new wheelchair that he controls pretty well with his arms and legs. He's getting to the point where he goes all over the facility on his own. The staff said that he gets into the elevator and goes downstairs sometimes when he's bored and they found him stuck in the opening one day, the wheel wouldn't budge, but he still goes all over the place it's good that he's more mobile and doesn't sit in his room all day!! We are thinking of having them restrain the left arm for therapy a little bit to really get the right arm going quicker, but we aren't sure yet...have to talk to therapy more about that ~Keri

Dylan's doing sooo great right now. The doctors and nurses are ecstatic with his progress! His blood sugar levels seem to be on track, finally, we had to adjust his night time insulin a couple of times, and it’s still a work in progress, but he seems to be on the right track now. He is also eating larger portions of food at mealtimes, which I know he enjoys, and it also gives him some much needed energy to push through the day! He’s doing physical therapy five days a week and is now walking with the aid of a walker! He is able to walk circuits around the large gym with the walker now ;) So awesome to see him do that!!! We also have him doing school through the East South Mountain High School district, he’s enrolled as a freshman there and is going to be doing classes at Hacienda so he can continue with his physical therapy regiment. We are soooo jazzed that he’s enrolled in school though, it will alleviate some of the boredom and loneliness that he’s feeling during the week when he doesn’t have so many visitors.
We have really been diligently working on his speech exercises so that he’s more pronounced in his words and its becoming easier to understand what he’s saying! He’s also initiating more conversations on his own now, he seems happier on the whole as well, they have quit giving him the situation anti-depressant medication he was previously on. The doctor says that Dyl is doing very well without it, he spends quite a bit of his day down at the nurses station talking to the nurses and people that come in and out of the unit.
We are also making it a point to take Dyl on outings outside the Hacienda facility. We have taken a trip to the museum, a few (million) trips to the mall, trips to Target and WalMart and just car rides when he wants to go out but we don’t really have anyplace to go. He really enjoys riding in the car and jamming out to “his” music. We are working on many outings now that it’s getting cooler outside and Dylan really enjoys spending time outdoors. We are excited to do some zoo trips and many other outdoor things.
He is all geared up for Trunk or Treat on Halloween at Hacienda…he’s going as a pimp. He chose his costume and is very excited, the residents get to dress up and go outside for the event. It sounds like it will be a lot of fun!


We are also working on getting Dyl’s AFO’s (the braces he wears on his feet for walking) adjusted as he is now needing them shaved down quite a bit, his left foot should be completely level with the floor and his right foot has only one platform needed!!! It’s great news since we were so worried about the drop foot that he was starting to get. His ingrown toenail is doing great too. The podiatrist took off the whole nail a couple of weeks ago and it is healing very nicely.
Dylan is doing great with all his endeavors, every weekend when we go see him there is so much improvement!! He’s making us so proud!!! It’s hard to remember all that he has done over the last few weeks since there has been so much, but he’s definitely improving on a daily basis.
This weekend Dan and I had him walking, without the aid of a walker (we each held one of his arms) all the way down the hall and into the day room!!! Needless to say the staff was amazed that he could do that, they hadn’t seen him walk that far before and he wasn’t tired, we could have walked up and down the hall more but it was time to eat dinner ;)


Please continue to keep Dyl in your thoughts and prayers!! Thank you for all the support!!!


~Keri

Dylan may head back to school!

Hope everyone is doing well. We are doing really good here. We had a great visit with Dylan this weekend. He’s doing so awesome!! Unfortunately, he was pretty tired, he has a 17 year old roommate right now that stays up until 4am listening to loud music and talking on his phone ;( We are in the process of getting either Dyl or this other kid moved so Dyl can get sleep and be ready for therapy.


We spoke to his doctor this weekend and he’s thrilled with his progress! Dylan’s right side is really starting to come on now, he’s using his hand and arm quite a bit more and is more smooth with its use now. It’s only a matter of time until the right side catches up with the left side. He’s walking quite a bit with the walker and is doing weight lifting to strengthen his arms. He is on the way to having his blood sugar levels under control too. They are working on getting that fixed because he’s now eating larger portions of food and we just found out yesterday that the thickened water he was drinking is high in carbs and he loves it, usually has five of them with his meals. We are trying to get the endocrinologist to find a different thickened drink that isn’t high in carbs or figure out a different regiment for the food/drink he’s eating now. We should have that fixed by next week for sure.


Dylan had an ingrown toe nail last week and the podiatrist finally came, after us asking about it for a few weeks, and fixed his toe. Now he has no nail on his big toe, hopefully it heals quickly, I don’t know if he’ll be able to get his therapy boots on with his toe wrapped the way it is right now…

Dyl is initiating conversations more this week than he has in the last few weeks it’s very cool to see him just start talking to Dan or a staff member and he’s picking the conversation they are having.

His progress has been amazing and we are so proud of him!!! He’s able to do so much more than he was able to do even last weekend!! We are currently working on getting him enrolled in school through Hacienda there in Phx…they have a school program right on the Hacienda campus and they also have a program where they can bus the kids to local schools. We are very excited since we think that will really help Dylan’s loneliness and get his mind really busy. The staff at the hospital is willing to work the therapy sessions around the school day too, so that will be great…keeping our fingers crossed that he gets enrolled soon. ~Keri

Dylan is doing sooo awesome! We have heard from countless people how well he’s doing and they have encouraged us to try and get him over to Barrow’s quickly…we are researching that option right now as well. He’s able to walk with the walker across the gym and does “walker races” and “wheelchair races” with the staff daily, his arms are getting stronger and his right arm is really improving! He is able to do the exercise bike and does a lot of mat exercises with the therapist. We have spoken to the speech therapist and he’s now got quite a few speech and learning apps downloaded on his Ipad for therapy. He’s really improved sooo much in the last few weeks, we notice new things every weekend when we go up there. He spent quite a bit of time sitting on the side of the bed and had no problem holding himself up for over forty minutes! He’s getting very good at the sit/stand transfer for going from his wheelchair into the bed and back. He loves to stand up, he likes to look down at me from his superior height! heehee, it amuses him that he’s taller than me. He is working with weights for both arms and is able to do quite a bit of physical therapy on a daily basis…last weekend they said that on Friday he was on the treadmill, without any support devices, and was able to walk on it for 5 seconds and then he had to stop, but last Saturday he was able to do the same exercise for a full minute!! He has started eating his full meal with his right hand and only uses his left hand if he needs to steady something! He’s using both his arms and his legs to control his wheelchair, which is really helping him to become more mobile! We took him out to the September 11th memorial at the park this weekend and he really seemed to enjoy being outside and loved having the time outside of the facility!! His blood sugar levels are well under control at this time and we are working on getting his nightly feed turned completely off. He is able to eat all his meals by mouth and we would really like to get him to where he can drink the nightly meal instead of using his g-tube. He goes for a barium swallow test this Friday to determine whether they can remove the g-tube in the near future, the doctor says that if he passes the swallow test it looks good for bumping him up to eating more solid foods and removing the tube!! Yay!! We are monitoring his feet right now too because he has a really swollen toe and we don’t want to have any open sores on his feet, it looks like it may be irritated from the boots they have him wear for therapy, we are checking to see if they can modify the boots so that he’s not irritated so much. Dylan and his friend Alison, who is a resident at Hacienda, have started “dancing” to the music on his Ipad, the staff says they spend quite a bit of time playing games together and listening to music together. Dylan is working on saying the names of different animals, vehicles and proper names and is doing really well in his efforts. The speech therapist has given us a couple of games to play with him to get his vocabulary increased. He’s still going strong in his recovery and we want to express HUGE THANK YOU’S to all who continue to keep Dyl in their thoughts and prayers, we appreciate it sooo much!! - Keri

Pictures from Camp

Whispering Hope Camp

Dylan attended camp up in Payson at Whispering Hope Campground from August 20 – 22 and according to the staff that accompanied him he had a blast! The campsite is beautiful (we looked at it online) and they have over 100 animals for therapy! The staff said he had such a good time, that they went swimming and horseback riding as well as doing many craft projects while they were there. They said Dylan had the most fun out of all the people that went. We were thrilled that he had a good time, he loves camping and being outside so that was a plus. He brought back some really great artwork too. Hopefully we’ll see the pics from the trip soon, they did say they have at least one of him riding the horse. 
When we got there this weekend, Dylan was doing really well, he has moved rooms and has a new room-mate again. He’s now on the opposite side of the hall than he was before. He’s got a roomie who doesn’t talk and is pretty quiet for the most part, his machines make a little noise, but we make much more than him on a normal basis so it’s all good. We ran into Dyl’s physical therapist on Sunday and she spoke with us for a few minutes and informed us that Dylan is doing AWESOME in therapy. He is walking, with a walker for balance, across the gym whenever he’s in therapy, his balance is really good and she said he’s a minimal assist on standing and sitting. When he’s standing in therapy they have taped a piece of paper to the wall and they let him draw/write on that paper, she said she held the pen and he grabbed it with his right hand and then wrote on the sheet of paper with his right hand too. When we were there this weekend we really worked quite a bit on his sitting on the bed and on the edge of the bed for balance purposes, he’s doing really well with that, he’s able to sit on his own for long periods of time. We played 4 or 5 songs on the Ipad before he wanted to lay down and relax. He’s very good with the wheelchair too. It’s not his own, but a borrowed one that has larger wheels so he can push himself. He’s able to guide himself across the dining room and he’s steering himself with the use of his foot too. It’s cool to see him mobile and not dependent upon us to get where he wants to go ;) He’s eating really well too. They still have him on the pureed foods at this time (because he had choked a few weeks ago on a piece of pineapple) but I think he’ll be ready for the mechanical softs really soon. His blood sugar levels are really stable too. He’s usually between 70 and 140 wooohooo, it’s been a long time since he’s been steadily in that range. He has a small bolus feed at 8pm, but he’s no longer on the overnight feed and he gets breakfast, lunch and dinner by mouth every day. We were able to take him out in the rain on Saturday for a little while, which was really nice, he loves the rain! It poured for about twenty minutes and then it cleared up, but he enjoyed sitting outside and watching the storm. He has made a few new friends that live at Hacienda too, he has the company of Alison and Jacob throughout the day and sees Tye pretty often too. The kids really seem to enjoy spending time together. It’s nice because they keep each other occupied when there’s no company there. We are really looking forward to this weekend, we get the long weekend with him. We have many plans on how to sneakily work him out. He doesn’t realize he’s getting the exercise because he thinks it’s a game ;)
Please continue the positive thoughts and prayers, Dylan’s progress has been amazing and we appreciate all the wonderful people who continue to pray for him and follow his progress. - Keri

Dylan can eat pizza!

We got to Phoenix a little early on Friday, Dylan was having a pizza party, his speech therapist said he was ready to eat pizza, he's been working on foods of different consistency for a while now and he's able

to eat the pizza! We were very lucky because we were able to surprise Dylan with a few of his grandparents, aunts, uncles, cousins and friends, showing up to see him. He was very happy to see everyone!! While we were getting the party situated Dan texted me to go up to Dylan's room with him and when I got up there Dan and I were joking over Dylan's bedside and when Dan looked at Dylan and told him to tell me
"duh, mom" Dylan turned to me and said "duh". Needless to say we were both floored that he was talking and when I said "what?", he said "yeah" and "yes" to me! Kate came in right after that and said that he's been
talking since Thursday and she was trying to surprise us on Friday by having Dylan say he's ready to eat pizza. I wish you could have seen Dan's face when he realized that Dylan was speaking ;) the smile was
from ear-to-ear!!

When we brought him down for the pizza party he was all smiles and happy to see family and friends that he hadn't seen in a few weeks. Dylan was able to eat 2 pieces of pizza and they had him eat some broccoli too so that he had a little bit of veggies. He really enjoyed his pizza ;) Kate was happy with his progress on the eating, she said he did very well with chewing his food and she even gave him some diet soda and said
he did very well with that. A lot of people who are just starting to eat again have trouble with the thin carbonated fluids, but Dyl did well.

When he was finished eating we were all still sitting at the table and he was speaking everyone's name!! it was so special for him to be able to look at each person and say their name, you know he's totally
remembering everyone and that's GREAT!!! We were thrilled that so many people were able to share in such a huge milestone with us he was talking all night long with everyone he had so much fun, you could
just see him light up when he saw everyone there ;) Kate was thrilled that he was having such fun too, she told Dan that you could just see Dylan's face light up when he saw everyone there with him

We got some really great pictures from Friday night, we'll get them posted soon.

Saturday we were able to get quite a bit of video of Dylan speaking to some of his family and friends. He's pretty clear when he speaks and he has such a deep voice now it makes me smile because he used to have a
little boy voice. Dylan called his great-grandma today too. He was able to answer her questions and spoke to her for about 5 minutes on the phone he really seemed to enjoy that ;) I know she was surprised to hear his voice on the other end of the phone. Throughout the weekend he made a few calls and seemed to do very well with conversations! He was aswering all the questions he was asked with appropriate answers and he didn't take a long time to process what was being asked of him.

Sunday we took him out to the mall again. He really enjoyed that so much! We spent about 3 hours out this time, he usually only goes for an hour or so. He was picking out stores to go into and looking at different shirts and shoes in a few of "his" stores! We also went to the food court for lunch and Dylan was able to sit at the table in a regular chair while we ate lunch he really seemed to like people watching while we were there. We got some good pictures of that too!! He did really well with the length of time we were there. He was ready to go back to Hacienda after 3 hours and told us he was ready to go eat his dinner. He kept saying he was hungry and wanted to eat so we took him back and he was able to eat dinner a little bit early he really seemed to enjoy that too. They served him turkey, stuffing, peas and fruit. He did really well with chewing the foods and drinking his drinks. He's able to really take his time and make sure he's getting the food chewed enough to swallow it. She's working on mechanical softs now. That means he gets to eat things like chicken nuggets, French fries, cut up meats, regular green beans and some solid foods that are able to be cut into bite size pieces. I am going to try and contact the dietician for Hacienda here in the next week to see about getting the overnight feed eliminated. We found out on Saturday that he's now on the diabetic formula for the overnight feed, but we don't think he really needs to have the overnight at all, he'll eat larger meals by mouth if the doctor will allow it and then get all his carbs and proteins during the day and if we can eliminate the overnight feed, he's more mobile at night and is one step closer in his recovery process.

Such good things were happening this weekend! Dan and I, along with everyone else, have been waiting since the day he woke up from the coma to hear his voice again and it was just phenomenal to hear it. I can't
describe the feeling you get when you hear him say "I love you Dad and Mom" for the first time again, let's just say there were quite a few "happy" tears shed this weekend. - Keri

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Dylan says "I miss you" and "Hi"

Dylan's shopping at Mill's Mall!

Dylan did a great job this week!
 
We bought him an Ipad to help with his speech therapy. The therapist said that it would really be a great tool to assist in his recovery. She’s very excited to see what he can do with it. We can download apps for reading books, doing math, learning new languages, playing games, listening to music and much more! She is going to use it with him five days a week during her therapy sessions.

He got to take a ride in the car this weekend. We had received a note from the doctor a couple of weeks ago allowing us to take Dyl on a short (2 hour) trip out of the facility, but he hadn’t really been up to it until this weekend. On Saturday we loaded everyone into the Denali and took him out for about a half hour. We drove around the surrounding area. He got to rock out to his favorite Bon Jovi songs and he got to see the Arizona Grand Hotel’s huge fountain. It was sooo cool to see him in the car. You would never know there was anything wrong with him to see him in the car. We originally had him in his “normal” seat then we thought we’d put him in the front seat and he really enjoyed being able to see everything from up there.
 
Then on Sunday we took him to the mall!!! Oh, if you could have seen him just taking in that experience! He was looking at everything and just enjoying being in a new place. We got to take him into a couple of his favorite stores. He loves Zumiez and Tilly’s and we were the first customers in both stores when they opened. Dyl got to pick out a couple of shirts and we were able to just look around for a little while before we had to get him back to the facility so he could eat lunch.
 
Dylan is now eating three meals a day by mouth, they are working on getting his food upgraded from pureed to soft solids, then he can enjoy chicken nuggets, French fries and pizza rolls! I know he’ll LOVE that when it happens. Don’t get me wrong, he loves eating the food they are serving now, but that will be like normal for him he’s going to be having a mini pizza party soon, the speech therapist said he’s almost ready to eat his favorite food and she’s really looking forward to him having that chance.
 
This weekend Dylan was saying uh-uh (no) very clearly and Dan heard him say uh-huh (yes) quite clearly too, it seems like he’s doing really well with forming words too. I saw him try and say “love” and he had the motion of the mouth and tongue right he just couldn’t get the sound to come out. He’s so close and his doctor is very positive that he’s going to be speaking soon.
   
Dylan’s sugar levels are starting to equalize a bit more now too. They have adjusted his eating regiment and we are working on trying to get it to where he eats only during the day and isn’t on the overnight tube feeding. I’m going to call his endocrinologist this week and speak to him about taking Dyl totally off the overnight feed and giving him more carbs during the day. They are giving him such a small amount of carbs right now, he used to eat 70 carbs for each meal and now they are only giving him 35 each meal, I know he would eat the extra food and they could even give him snacks during the day if they needed to. I’m hoping we can get that done soon. I think it would be another big step in his recovery.
 
Please continue to keep Dylan in your thoughts and prayers, he’s doing so good. His spirits are really high and he’s laughing more and more every day! The nurses say he’s hardly ever sad anymore, which is so great to hear!! He used to cry because he was lonely, but he has a new rommmate and they are closer in age than his last roommate was. He also gets to spend time down at the nurses station and they let him go to the cafeteria to eat his meals so it gets him out of the upstairs unit a bit more, which he really enjoys. - Keri

Dylan riding in the car

Dylan sends a text message!

We are doing very good! We got home last night after spending the last nine days in Phoenix with Dylan. It was such a good visit and we got to see so many things that we don’t normally get to on the weekend . I have so many things to pass on.
When we got to Phoenix on Friday night last week, Dyl was still awake and was very happy to see us, he’s now showing emotion when he’s feeling something, so we got a huge smile and laugh when he saw us! He was awake for about an hour after we got there and while we were visiting with him he was playing with Dan’s phone and he texted my phone and sent me this message: “I love you”, I couldn’t believe that he was doing that! He’s aware of how so many things work and he was able to type the message on his own, Dan just had to hold the phone steady for him!!
Dylan has progressed to eating his lunches by mouth, pureed foods only, and he’s totally enjoying that experience! He gets very happy when lunch time comes, he gets to go down to the dining room and eat with all the residents and guests, which is very good for him to socialize. He is watched very carefully to make sure he’s getting small bites of food and drinking his milk or water between them to clear his throat. He’s doing really well with that! He is able to use his left hand very well to eat and drink and we are working on getting his right hand going too. He was using his right hand by the middle of the week and doing good with that! They have him using a spongy handle cover on the spoon when he uses his right hand, it helps him grasp the spoon better. He is able to eat just about any food that is low in sugars and carbs when they do lunch . He really liked his chicken parmesan the other day. They have him on thickened liquids which help with the swallowing, and they have many flavors for him to drink, he really likes the apple juice and the milk!
Dylan is also using his voice on a consistent basis! When he answers a question he is now using his voice at the same time, so if he is nodding yes, he’s also trying to say yes at the same time. He’s doing really good with that! He likes to talk to us when we are there. He is very vocal and we think that soon he’s going to be talking. He is moving his mouth in the shape of letters and words when he is making the noises too, which is very encouraging and his doctor thinks that he will be talking very quickly.
He’s using his math skills and reading and writing skills on a daily basis, we ask him to count or add and subtract throughout our visits to make sure he’s consistently using those skills and he’s very good at that ;) he is able to answer our questions and read the dry erase board and complete the answers to our questions. When he is trying to roll in the bed he’s able to do that on his own now, he knows to grab the side rail of the bed on the side he wants to turn to and then he picks his back up off the bed and shifts his hips and legs in the same direction and is able to get on his side all by himself! He hadn’t been able to do that before he is also now able to stand up from the side of the bed with a minimal assist from someone. He puts both feet over the side of the bed then shifts his body and uses the side rail and pushes from a laying down position into a sitting position and gets balanced on the side of the bed and then is able to bear his weight to push into a standing position then when you help him stand he’s able to move his feet to step to a chair or into his wheelchair which is soooo awesome!! He’s definitely more mobile!
He is working on strengthening exercises for both his arms, his legs, his abs and his balance on a daily basis with the occupational therapist, and she’s very good with him. He is able to use his right arm quite a bit more than he could before, he actually had his arms above his head yesterday and was able to keep them up there while he was sitting up he is doing weights with both arms and does ten reps with each arm, he does a 1 pound weight in the right hand and a 2 pound weight in the left hand. He’s really good at doing the reps, especially if someone is doing them at the same time he is. He’s also using a hula hoop with shower curtain rings linked on it to exercise his shoulder and arm muscles. While the therapist holds the hula hoop in the air he has to reach from one side and drag the shower curtain ring from that side to the other side without letting go of the ring. He’s doing real good at that, his first try was on Friday and he was doing a very good job. Dylan and I played checkers this weekend too, he remembered how to play and knew what moves he wanted to make and did real good, he beat me when we were playing and knew all the rules of the game. I was really happy to see that, I wasn’t sure if he’d remember how to play, but he did!!
Dylan’s occupational therapist has him do a daily routine, he has to get out of bed and into his shower chair where she has him shower and shampoo himself and then she has him help get dressed and then he has to put on his own deodorant and he has to fix his hair and brush his teeth, she says he’s doing really good at getting the morning routine down pat. He’s assisting her more than he ever has before! He really seems to like being able to do for himself!! She also has him building a model with her during their therapy sessions, he has painted it and is getting ready to assemble it soon, when they are done she says she has another one they can do together.
While we were there this past week, Dylan was able to do leg lifts while sitting in his wheelchair, we had him doing five to ten reps on each leg at different times of the day just to keep his body moving. The physical therapist has him using a lite gait machine…it suspends him so that his feet touch the ground but the machine takes most of his weight and then he is able to walk while the machine assists him. He was doing really good with that on Thursday! He took about five steps in one direction and then they turned him around and he took five steps back to where he started!!! 
We were able to take Dylan down to the Angel House and he really seemed to enjoy being in there. He was very relaxed and we stayed there for about a half hour.
The doctor said that Dan and I can take Dylan off the property for a short (2 hour) outing when we are there, he said its very good for Dylan to go off the property every once in a while, it boosts his morale now we just need to find some things that he would enjoy seeing there that are no longer than a 2 hour outing it will be very cool to get him off the property.
Dylan is able to sit in a regular chair now for his meals he spent a good two hours in the regular chair on both the days that we did it, he was very relaxed and comfortable in it. It’s nice that he’s able to sit in the chair versus his wheelchair or his bed.
He’s doing really good, the human resources director said that Dylan is a good candidate for Barrows institute when he is totally finished rehabilitating at Hacienda. The neurospsychologist said that she is recommending that he go there when he has completed all he can at Hacienda and then they would work with him at Barrows and then release him home such great news!!!
Please continue to keep Dyl in your thoughts and prayers, he’s doing an AWESOME job!!! - Keri

Dylan savoring H2O

Dylan and his walking machine

Dylan sitting up/making model

dyl @ the angel house, uncle garry drives me crazy : )

Dylan feeding self his 1st pureed meal!!!!

dylan's kickin' keri's booty @ checkers!!

Thanks for the phone Great-Grandma!

Dylan was sick with the flu the weekend of June 11, but he still pushed forward, he was very interested in trying to do a few things here and there, but you could definitely tell that he was not feeling well. He had picked up a flu bug the Thursday prior to that and had been pretty icky for a few days, when we got there on Friday he was still a little ill and had been sick about an hour before we got there, he got sick again on Saturday, so they backed him off the feeding tube for a “normal” run of food and gave him mostly pedialite for nutrition. Sunday he seemed to be getting back to normal but was a bit weak from being ill.


He was still a trouper and willing to try and do whatever we were asking him to do, but you could tell that he wasn’t right.

This weekend was so good!!! Dylan’s friend Meagan and her family came up to visit him for the weekend, he really enjoys visiting with them and loves having them there. A couple of other friends stopped by to see Dylan and you could tell that he was happy to see them!!

He is doing really well, we spoke to his doctor who informed us, after months of not being very positive, that Dylan is doing really well and he thinks he’ll be talking very soon!!! Yay!! That made our day, of course. We were so happy to hear that, it has seemed like Dyl has been moving his mouth a lot more lately as if he wants to talk. He has made more sounds and is trying to say "yes" and "no" when we ask him a question! He is very good at nodding yes and no too, which is new as well. He was able to show us yes and no in sign language, but we wanted him to use his voice or his head to tell us so that he’s using his neck muscles. He’s doing really well with that. He is also really enjoying having sugar free pudding, the nurse let us give him some vanilla flavored pudding the other day and we put the container in Dylan’s right hand and handed him a spoon and he probably had 4 bites in his mouth in about 2 seconds!! He was really happy when we asked him if he wanted some pudding, he got a huge smile on his face and was nodding really quickly! 

The therapist has ordered Dylan a wheelchair specifically made for him, it’s one that Dylan has to use both hands on the taller wheels to move and it has no head rest, so he has to use his neck and shoulder muscles to sit up straight.

The therapist is also working with Dyl to sit on the side of the bed for longer periods of time and then she has him put his feet on the floor and stand then do a pivot and sit in the wheelchair, he’s doing really well with that! She is very happy with his progress and wants to work more days a week with him and is trying to get the doctor to write that order.

He spent quite a bit of time laughing this weekend, he had lots of fun joking and playing with everyone.

Dylan also saw a camera come out and before I could even ask him to smile, he smiled for me and was able to use both sides of his mouth for a big smile!! We were so jazzed, he’s been trying for a couple of weeks to get the right side lifted for a smile, but it was just this weekend where he was able to do it...Yay Dylan!!

There is still a bit of miscommunication between his doctor and endocrinologist on Dyl’s blood sugar levels and he is still pretty high right now, Dan and I are working on getting an order put in for a diabetic formula instead of a regular formula to help out with it a bit, and we are going to speak to the endocrinologist this week and try and have a sliding scale put back into effect to try and get his levels more manageable because he’s creeping up there most of the time and we want to prevent any high sugar levels that could lead to complications. We are so proud of Dyl, he’s doing an AWESOME job learning new skills all the time and keeping up the great work to stay flexible and remember all the things everyone is teaching him on a daily basis. Everyone at Hacienda is so proud of him and they all come by his room multiple times during their shifts to see him and give him knuckle-bumps, high fives or thumbs up and makes sure he’s doing well. Dylan also received a cell phone from his Great Grandma and that seems to be a really good tool for him! He was so happy when he saw that, his smile just about cracked his face. He called her right away and she talked to him and then Meagan called and talked to him and he seemed to really enjoy hearing their voices!!
Please continue to keep Dylan in your thoughts and prayers, he’s doing soooo great!!  - Keri

Dylan wrote his name!

Dyl is doing great, he has made many improvements in the last few weeks. He is now feeding himself with his left hand. He is able to eat some soft foods when Dan and I are there to monitor him. He really enjoys having applesauce and we are going to try some sugar free pudding soon ;) He is able to read a note and do what the note says. I wrote a note this weekend asking him to wave, point, hang loose and to show me blocks of different colors and he was right on every time!!! He really seems to understand everything! Then Demetri asked him to write his name on the dry erase board and Dyl did it right away without even thinking about it!! He's doing AWESOME!!! We spoke to his nurse a weekend or so ago and she said they had ordered him a wheelchair of his own, but they are hoping that it can be cancelled because he is already way advanced from that model, that model had small wheels and a head rest that would help support his head. He doesn't need either of those features anymore they said they need a chair that has larger wheels so Dyl can wheel himself around ;)

Happy Birthday Dylan! Everyone keeps sending me emails, pics, and updates of your progress. We are all so proud of your accomplishments and can't wait to get you back to scouts, your pictures are up in the a-frame building and you're in our prayers at every meeting. You are an amazing kid and you will do amazing! Dan & Keri, I haven't talked to you in a while, and I really miss being able to stop by and see you guys but wow what a great move for Dylan! He is so lucky to have you guys and the selfless choices you have made on his behalf! You have really rolled with the punches and are an inspiration to us all!

GOD BLESS!!!!!!

Peace, Love, And Prayers!

HAPPY BIRTHDAY DYLAN!!!!!!!!!!!!

Tom, Tracey, Triple T, and Janell Tracy

HAPPY 14th BIRTHDAY DYLAN!

We are all looking forward to coming up and visiting again soon. Hope you and your family have a good day! Love, The Smalling Family

Dylan scores high!

Our weekend up in Phoenix was GREAT!! Dylan has made sooo many improvements. When we got up there on Friday night, the patient tech told us that Dylan had a very busy week in therapy! He's doing so good. They said he is moving more and more aware of who/what are around him! He was wide awake when we got there on Friday night and we visited with him for a little bit before we went to the hotel. His blood sugars are still a little wobbly, they were in the mid 300's on Friday and for part of Saturday. Saturday morning Dyl was in the day room when we got there and when we walked in the door he smiled at us when he saw us! Such a neat thing to see!! The nurse told us that he's making a lot of progress with his therapy, she said that he's doing shapes right now, they give him a star/square/round shaped block and he has to put it in the correct opening and he was doing that!! I guess that's something they weren't expecting him to do at this stage!! He also was watching the patient care tech over the weekend and they both had glasses on and they were talking to Dylan and joking that he should reach up there and take their glasses off, and he reached up there to touch them! He also makes many movements on his own without prompting to get comfortable now! It's so neat to watch him relax in his chair or to settle himself more comfortably in his bed! He was hanging out in the day room on Sunday and we were talking to him about what was on his blanket (rodeo, cowboys, campfires and camping gear) and Dan asked him where the campfire was on the blanket and he lifted his hand and pointed right to it!! He is doing really good with keeping his head central (he used to have it turned to the left or right side) and he's pretty good about keeping it in the middle now. He is also using his hands to scratch itches on his face/nose and to rub his hair! It's amazing how much more mobile he is now! We saw and heard him laugh again this weekend! That's always a treat, he has such a sense of humor and really seems to know when you are having fun and joking around! Dan and I were asking him for kisses this weekend and he lifted his head toward us to get kisses.

He is also doing some art work with the therapist during the week, he did a picture they put up in his room! So cool to see that he's able to control his hands enough to do that kind of thing!! He understands more of what we are telling him too, he knows when we are going to lunch or to run an errand and we tell him we'll be back soon, and then he gets mad at us when we get back because he was by himself for a little while. Our friends went up to see him yesterday and they said the therapist told them Dylan's therapy went well his target goal was a "5" and he got 5 out of 5!! Way to go Dylan!!! They called Dan to tell him and when they put the phone up to Dyl's ear and Dan talked to him he got mad and started crying because he couldn't see Dan. So he seems to be understanding and aware of tons more stuff! His birthday is coming up soon and we are having a mini get together for him up there. I can't believe that he is going to be 14!! He's grown so much in the last few months! I saw a picture of him in his wheelchair yesterday and our friends kids were standing next to him and he looked like the jolly green giant next to them! He's so tall!! He really seems to enjoy being outside more and more. When we took him outside on Sunday he was just watching the birds and looking at the cars passing by and then checking out the mountains! He was so much more alert as to what was around him! He's still working on the knuckle-bumps and he's getting really good at moving his arms up over his head to relax. We've noticed more controlled movement on his right side too, which is great because his left side has been so dominant! ~Keri :o)

"Knuckle-bump"

Hi all! Dylan is doing GREAT!! He had tons of company this past week, his cousins came up to see him on Thursday! Yay!! I know he enjoyed their visit and the pics were cute! :) Then on Friday Ms. Ronda came up to spend a few hours of time with Dylan and give hims some "sugar", which I know he enjoyed :) Saturday his Gaga, Aunt Dena, Uncle Chris and the "cuzzins", Brad, Tracey, Brandon and Tyler all came over to see him!! It was a party in Dylan's room!! :) He's doing so much more moving around right now :) He is moving his left arm quite a bit, he is able to lift it over his head and rub his hair, he even uses his hand to scratch his nose a lot ;) He is now using his right hand a bit more too, the aid was telling us that he is doing a lot in therapy too, his is taking things out of the therapists hand and holding them! He did that for us this weekend too, we had his ipod and we dangled it in front of him so he could see it and he lifted his hand and held onto it :) He is also doing the "knuckle-bump", thanks to Brad for trying this out, it's a new thing he's doing and is consistent with :) He is able to lift his head for longer periods of time and is aware of who is near him and what they are conversing about. He was smiling and laughing again this weekend!! I know the company he had made him sooo happy! He was also able to see his Aunt Sherry and Uncle Garry via oovoo, it's an online live chat that we joined, and visit with them a bit! There's a sponge thing that the nurses use to give Dylan medicine for his thrush on his tongue, we used one on Saturday to give him a bit of water and he actually grabbed it out of his mouth and put it down by his lap, then we let him hold onto it and he put it in his mouth too!!! So many new things he is doing!!

Yay Dylan!!! - Keri

Dylan loves to laugh!

Wow, what a weekend Dylan had this weekend!! We didn't get to go up on Friday night, but boy did he show us such improvements on Saturday and Sunday!! Dylan's friends Meagan and Jeffrey went to visit him on Saturday, they were able to get there early in the morning (thanks to Lynn and Jeff for all your support and brining Meagan and Jeffrey up there, it means the world to us and to Dylan!!!) and got to spend the day with Dylan. They had him LAUGHING!!!! I can't tell you the feeling it gives you to see him laugh! We had seen him smiling for a couple of weeks, but he was actually laughing this weekend. He is understanding humor and relates smiling and laughing to an appropriate response to humor! When we walked into the day room on Saturday afternoon he smiled at us and then proceeded to laugh at jokes and smile when something made him happy. If you could have seen the smile on Dan's face, it was ear to ear, it made my heart happy!! Dylan is doing great, he is able to move his arms more and is getting very good at picking his left arm up over his head and resting it up there to relax, he is even starting to move his right arm more! He was touching his face quite a bit this weekend and it looked like he was rubbing his nose and cheeks, as if they were itchy, a lot this weekend! He is still pulling his knees back on his own when he is done stretching so that he doesn't get a muscle spasm, and he has figured that relief out on his own!! Dan asked Dylan to hold his hand this weekend and Dylan moved his hand from his lap up into Dan's hand all on his own, and he did it multiple times!!! I know he totally enjoyed having his friends there to visit this weekend! We love it when he has company, especially friends his age.

Then yesterday he had his aunt and grandparents up for a visit, which was sooo nice!! He was smiling and laughing again!! He has gained so much ground in the last few weeks!! The doctor wants to have a neuropsychological evaluation done on Dyl in June. It should help pinpoint the best plan for his recovery and therapy :) Dylan is also continuing to make choices with his eyes, he is asked yes/no questions and consistently answers the questions when asked and he is able to communicate some choices with what he'd like to wear and do for the day :) Please continue to keep Dylan in your thoughts and prayers, he has come a LONG way!!! - Keri

More progress

Dylan is doing so good! We spent the weekend there and he is doing so many new things. When we saw him on Friday night he was still awake and he picked his head up off the bed and was watching us and then he repositioned himself on the bed to get more comfortable.
He is moving his arms more, he actually picked his left arm up over his head and rested it behind his head (like you do when you stack your hands under your head to relax) and then he was sitting like that for a few minutes. And yesterday we had him in his wheelchair to take him outside and he put his arm up on the armrest and was relaxing like that, he normally just sits with his arms tucked really close to his body.
He was smiling a lot yesterday afternoon too!! We got a smile out of him when we were joking around again, and this smile was on his face for quite a while!!! Then we were walking around the hospital and one of the workers stopped Dylan and was talking to him and Dyl smiled at him and kept that smile on his face for a long time and then he smiled at Dan when we were sitting outside for a few minutes!!! It was sooo great to see!! He is also more aware of his surroundings and what is being said around him. On Saturday, I was talking about painting my toenails and Dylan lifted his head right off the bed and was looking at my feet, as if he was seeing if they were already done.
He has made so many strides in the last week that we couldn’t believe it!!! The staff is so pleased with his progress too!! He is now getting more food on a daily basis and because they have increased the dose of food he is eating, they are monitoring him again because his blood sugars went up. He was over 400 on Friday night, but by Saturday he was in the 200’s again. They are very good about keeping track of him and he seems to be leveling out again.
We want to send huge thanks to all the wonderful people who volunteered to help with the bake sale!!! It truly warms our hearts to know how many people care for Dylan!!! He’s improving so much, please continue to keep him in your thoughts and prayers!! He’s doing great!! :o)  --Keri

Dylan is doing better and better everyday!

I would like to thank everyone who helped with the bake sale and all the people who donated to the medical fund. I wish Dylan were able to see how much support he has, first hand! I am beside myself to see, and hear all the great things his friends have to say about him. I stopped by Carson Middle School this week and it was more than uplifting to hear all the love for Dylan from the administration and students in the office. He truly is an incredible kid!

Peace, Love And Prayers, Dylan!

THANK YOU!

Today was a great day for a bake sale at Sunflower. They have the best customers! We raised just over $1,000 to help Dylan. A Big Thank You goes out to everyone who donated, baked, and volunteered you are all awesome!

Fundraiser for Dylan!

On Saturday, April 24th we will be holding a bake sale to raise money for the Dylan Skay Medical Fund. Please stop by and say "HI". We will be at the Sunflower Market located at Pantano and Broadway from 11-3pm. See you there!

Smile!

The weekend was great! He's not only holding his head up really well, he smiled at us on Saturday. Dan and I were joking around and Dylan seemed to understand and started smiling in the middle of the joking. We have working Dylan out pretty good on his range of motion and all the doctors and nurses at Hacienda have noticed that Dyl really seems to be progressing quite well. He is more alert and very aware of many things and the people who are around him. He does very good at following the sound of voices and is awake most of the day now. He only took a one hour nap on Saturday. We are so proud of him, he's doing an awesome
job with everything. I can't tell you how excited we were when we saw that smile and then we were able to get him to smile twice more on Saturday after that. - Keri

Great progress!!

Dylan is doing really well. He is able to hold his head and shoulders up for longer periods of time than last week. He is also moving his mouth more (like he wants to speak) and when we put blistex on his lips he puckered up and then rubbed them together to spread it around. He’s also opening his mouth right away when someone asks him to, when they have to do the medicine and when they want to brush his teeth. We spoke to his doctor on Sunday and he said he’s noticed improvements in Dylan too. He said he’s more alert and seems to focus better than before, woohoo!! He’s going to have another doctor do an evaluation to determine the course of therapy that is correct for Dylan. We spent Saturday and Sunday working a bit more on his range of motion. He’s been pretty loose and is able to stretch out very well. We have also been using his boots more and his hand splints a bit too. It seems like he’s more used to the boots now, he doesn’t get mad right away when you put them on, he had them on for a good four hours on Sunday and they didn’t bother him at all. When I was talking to Dylan on Sunday he really seemed to concentrate on me very well, he looked right at me and when I’d pause it was like he was waiting to hear the rest of the conversation. He’s making so many improvements lately. His sugars are still on target…the doctor has him on just two insulins at this time, but they are still monitoring to make sure that will be enough. - Keri

Hey guys! I hope all is well with you. I am really happy to hear so many awesome things about dylans progress. I have been really swamped at work and think of you often, I mention scouting alot while working, in fact the other day I had an senior customer ask me what troop I was with! I told him troop 129, he asked where we chartered from, and I said, "The church on broadway before IHOP.

He came back to the room bearing a 30 year old troop 129 asst. scout master uniform, He told me he stayed in two years after his kids quit because he liked to hike. Appearantly the troop was known for being the "hiking troop".

Easter Weekend

The weekend went well. Dylan had quite a bit of company up in Phoenix this past week! Dena, Chris, Demetri, Xander, Maddison, Meagan, Jeffrey, Jeff and Lynne all came up this weekend to see him! It was so nice for him to be able to see everyone! He really seemed to connect so well with Meagan! His eyes were wide open whenever she spoke and he was focused on her a lot! So great to see him react that way!! The kids were unable to come into the care facility because they don’t allow anyone under the age of 13 in there, but we took Dylan outside for quite a while a couple of times on Saturday so he could see them. He was very focused on Maddison when he saw her. He seemed to watch everyone when they were talking and really enjoyed having the family around! The kids were a little shy at first, but everyone was back to normal soon after they saw him.

Dylan has been working really hard on his sitting and doing the sit/stand machine he is also doing a great job with the decision making skills he is developing through eye contact. We try and ask him a lot of yes/no questions so he can make a choice that way too! His blood sugar levels seem to be getting back to “normal” as well. We spoke to the nurse this weekend and she said he’s pretty stable with the sugar levels lately, but they will continue to monitor him and make sure he stays that way. They have started doing the 24 hour insulin in the day time to carry him throughout the day and into the night and they boost the 24 hour insulin in the evening at 8pm with a 12 hour insulin. This seems to be working well. They are pleased with the results so far. The doctor indicated today that they may try and use novolog (short acting) insulin soon, but he hasn’t made a decision yet.

Dylan started really moving his mouth, as though he wants to speak, the other day and is doing that quite consistently!! We were so excited the first time we saw that!! He’s also doing a great job with picking his head and shoulders up off the bed and slightly repositioning himself on the bed. He’s done this quite a bit throughout the last couple of weeks!
We started a picture collage of all Dylan’s friends/family up on the cork board in his room, it’s a work in progress, but at least he sees everyone during the day that way. - Keri

Back from the Hospital

Dylan is doing so good!!! He is back at Hacienda, he had to spend 3 days at St. Joe’s hospital in Phoenix for the cellulitis in his elbow. He is recovered from the cellulitis. His arm is no longer swollen and he is going to get antibiotics for 5 more days to make sure the infection is gone. While he was at St. Joe’s the endocrinologist (diabetes doctor) there examined him and decided that they would like to try a new insulin regiment. He is now no longer taking insulin during the day, he used to take it 3 times a day and then at night. He is only taking the night time insulin now. The doctors think they can control his blood sugar strictly on diet and monitoring his physical activity. They said as long as his blood sugar stays below 400 it will be fine. So far his sugars have been ranging between 136 and 350… we’ll see how it all shakes out. Dan and I aren’t really comfortable with not having him on insulin when he has food but the staff is really monitoring him to make sure he’s ok.
Dylan has progressed to the sit/stand machine and the physical therapist said he did a great job with that last week. She is going to work with him some more on that this week! Hopefully she will take pictures of that, we asked, we’ll see what happens J he is doing really well with holding himself in a sitting position and keeping his chin up, he holds his head level for quite a few minutes now! And when the nurse tried to give him medicine for the thrush on his tongue, she asked him to open his mouth and right away he did and she didn’t even touch his mouth or anything. He ‘s doing great with following conversation with his eyes. He makes choices on what he’d like to wear, watch and do during the day too. He’s more alert and seems to be aware of more every day!! We are sooo proud of him. He’s making such huge strides every day!!! - Keri

Love that IPOD

Dylan is doing great. He moved rooms over the past week and is now in an igloo (65 degrees, brrr) which is causing his left leg to have muscle spasms. We spoke to the nursing staff and they are checking into getting the heat turned up in there for the boys. I hope they do it soon, it’s very cold! We took him outside for a few hours both on Saturday and on Sunday and he really seemed to enjoy being outside. It was very windy on Saturday though and he may be suffering a bit from allergies now. The staff is monitoring his left arm, which was swollen a bit this weekend. They have taken him into the emergency room already to get it checked and they did find inflammation in the left elbow area so they prescribed an anti inflammatory medicine and he’s resting comfortably now. Dylan got an IPOD this weekend and really seemed to enjoy listening to his music and holding the IPOD in his hand we got some good pictures.

We are trying to get a doctor’s order to take him over to the park next door to Hacienda for Easter weekend. I think it will be no problem, the nurse said the doctor will probably do it this week for us it will be nice to take him over there so he can see the kids playing at the park and sit under the ramada for a little while.  - Keri

Phoenix visit

Dan & I were in Phoenix last weekend, Dyl is doing GREAT! He has made so many improvements in just 1 week. The Physical therapist is working on his posture, he now sits up real nice and tall and can hold his head up for quite a while, she's also working on getting him in a sit/stand chair so he can try standing! Occupational therapy said he doesn't really need the arm braces as he's pretty relaxed there, but we are keeping up with the use of them anyway. The student nurses said that he's made many improvements with his tracking and alertness in the last few days too! In general he's more relaxed in Phoenix than he ever was in Tucson! The staff at Hacienda is wonderful & they're taking GREAT care of Dyl! Please continue to keep Dyl in your prayers! - Keri

Great progress made this week!

Keri reported this morning that Dylan is looking really good, his eyes are more widely open, and he's much more alert. They have him sitting on the edge of the bed (with spotters nearby of course) with straight spine, holding his head up and turning his head while sitting, which the therapist is impressed with. Many of the staff is saying he has had very good positive progression this week in general. He is much more calm, relaxed, not on any heavy pain medication, as was case at HealthSouth. He receives a shower daily, getting dressed in his clothes, gets his teeth brushed like normal, rather than sponge applicator, and he is being treated for thrush, which is nearly cleared up. His arm braces are no longer needed for his arms because they aren't super rigid or in one position. Therapists may have him standing today. When given the choice of which of 2 shirts he preferred today, immediately zeroed in on one (rather than taking a few minutes to comprehend/decide/choose). When Dan switched shirts into opposite hands and asked again, Dylan immediately focused on the same choice.


Dan and Keri are very impressed with the environment and staff's attention and interaction and various stimuli being administered to see if they get a response. Bless You All, Val