All Grown Up

So I'm a bit late with this post. My tiny baby boy is all grown up and goes to all day long Kindergarten. We were able to meet most of the people that are involved in James' school day on the day before school. We met them all and taught them all about James and what he likes and dislikes. I found that so helpful! I think they did too. For the first couple weeks there were lots of phone calls to mom to find out even more about James. He is adjusting very well to all day school. The first couple days were the toughest. James gets on the bus at 7am every morning and gets home at 2:30pm. That's a long day for a little boy-especially one who is so busy at school. His day is pretty jam-packed at school. He spends the majority of his time in the Special Education classroom but gets integrated into his own classroom for group times like snack, phy-ed, art etc. He is loving the group reading time in his classroom and his teacher reports to me that the students that sit in his pod with him have become very protective of him! In the morning before school starts he is in the gym with all the other kids and his para and it sounds like all the kids love to hang around James and help him and push his chair. Other things on his agenda each week are 100 minutes of speech therapy, 60 minutes of therapy with the deaf and hard of hearing services, 60 minutes of Occupational Therapy, 60 minutes of Physical Therapy, and 60 minutes of Adaptive Phy-Ed. That's all in addition to his regular school day in the classroom/special ed classroom! Last week his teacher reported to me that he identified the sounds for the letters "F" "M" and "P" He is still strongly motivated by the computer and iPad and is using those frequently to complete his schoolwork. His team of teachers is working really hard to find the best ways for James to communicate his knowledge and wants to us. Just today they had an evaluation with the assistive technology person for the school district. They got a switch to help James use his iPad more effectivly and are exploring other options-even having an evaluation for an eye gaze computer system for him to use!!! Wow! I can't believe how much has happened for James in other a couple of short weeks at school. I can't wait to see what else he'll teach us this year!

Safety First

Tragedy struck a town close to us last week that reminded me of the dangers of having a child with special needs that I'd rather forget. An 11-year old autistic boy wandered from his home and was found the next day in the river. How tragic. I cannot imagine the grief his family is experiencing. When I heard the news I wanted to break down and cry.

While I know that right now this isn't something that could happen to James, it reminds me of how vulnerable he really is. He can't scream for help, he can't get up and walk away from danger, he can't stop himself from falling off his bed. I think as a special needs parent I'd rather forget these things. We have so much going on already from school, to therapy to feeding that it's easy to forget, or take a passive approach, to safety.

Since James is not mobile that saves us a lot of headaches when it comes to safety. We know he isn't going to wander off in the neighborhood or fall down the stairs. But there are some areas that I know I'm lacking in and I can no longer ignore. The biggest one I can think of is James' bed. When we moved into our new house several months ago we bought the boys bunk beds. I knew that when we put James in a regular twin bed that I was going to need to buy a railing so he wouldn't fall off. But I haven't done it yet. Moving James into a twin bed was a safety decision in and of itself. He was getting his arms and legs caught in the railings of his crib and I was afraid he would break a bone. So to the big boy bed we went. Most of the time he's ok in his bed. But he has fallen out and he has gotten his hands stuck underneath the mattress and scraped up his knuckles. This week I am buying a railing for his bed.

Another recent thing that's popped up is James' safety on our couch. He spends a good amount of time lying down on our loveseat-that's James' spot. I've never thought much about James falling off-he can't roll, so he can't fall off. Wrong. Twice last week he fell off the couch. He wasn't hurt either time, in fact the second time it happened he was just content to be on the floor. I need to make sure I'm closer by when he's on the couch now.

The last big safety issue I can think of is James' special tomato chair. It has a harness-so it should be safe right? Wrong. We don't use the entire harness. After we moved to our house I couldn't find the pelvic portion of the harness so we weren't using it. Well James has gotten pretty tall and when he arches his back (when he's excited mostly) he pushes on the floor with his feet and is close to pushing himself out of his chair-while it's not a big deal and it wouldn't be a fall very far, it still isn't safe.

All in all every parent has to worry about the safety of their kids. I worry about Elliot getting out the front door/garage door on his own and rushing to the street. But those of us with special needs children need to remember that our children are much more vulnerable and we need to be more vigilant and not forget or get passive about the safety of our children.

Pictures Now, Words to Follow

Independence Day

Our Independence Day this year was pretty low key. I had to work again this year. We slept in-which Andy and I both needed. I usually luck out on morning when Andy is home and doesn't have to work. A typical morning has Elliot coming into our room telling us it's time to get up. "The sun is Up" is what he always says, and then he pesters me until I wake up. However, if Andy is there and Elliot notices he skips right over me and heads straight to Andy and tells him it's time to play or something like that. I guess I know where I stand. I'm ok with it though-I generally get an extra hour or so sleep because of it.

After sleeping we just did little things around the house while the kids watched tv. We took a walk to the park that's close to us. James and Elliot both LOVE the merry-go-round. The kids always love going to the park to play and behave really well. I was a little hot and not enjoying the muggy air so we finished up our walk and headed home. Once home I had to get ready to go to work. Andy was good enough to cook supper on the grill and bring me some at work. Once back at home the kids and Andy made s'mores and now that all Elliot wants to eat. Having a low-key Independence Day was ok for me this year-especially since we're gearing up for a long trip next week.

Trying to Catch Up

I am all over the place lately. I just can't seem to catch up on the blog. Every time I get a chance to write a post I think of 4 more posts I should write!

Before we went to Philadelphia James and Elliot and I headed to Rochester for another check-up for James' cochlear implant. Everything was good and he improved on their little questionnaire. He's around the hearing ability of a 9 month old. So it's great that we're still seeing improvement. As with all things with James we aren't completely sure where he is because he can't always tell us! We'll go back for another visit in August before school starts.

School has since ended and started again for James. The last day of school was so very bittersweet. Eagles Education Center has been pretty good to/for James. The teachers and kids all love James and they all know him! They love to help him and talk to him and give him hugs! It's even more fun to see his classmates out and about in town! They spot him right away and run right over. That sure makes a momma feel good. The staff at Eagles has been amazing over the past 2 years. Everyone from the secretary, to the principle to the therapists and paras love him. It was pretty fun to drop him off and pick him up every day and have soo many people talk to him and get excited for him to be there. The therapists and his teachers have seen the amazing potential in James. They want to see that potential reached and went above and beyond to connect with his future teachers for next year. We were very sad to say good bye to Eagles Education Center. James started summer school a couple of weeks ago at the Lodoen Center in West Fargo. I had a mini-panic attack about sending him that morning. I was worried. All new teachers. They don't know James-he doesn't know them. I was very hesitant, but of course I got a good report and James had a good week at school. Now he's off for 3 weeks and will go back for 2 more weeks.

We're gearing up for our trip to Tennessee and Florida in a couple of weeks. It actually worked out pretty fabulous. My cousing Troy is getting married in TN and the dates are perfect for us to stop by the wedding on our way to FL for our next ABR session! Andy will get his first ABR training and I'm pretty excited to have 2 of us to work on James. It gets pretty hectic when I try to do all the day time things that have to be done and ABR, especially when James is in school 1/2 days. Andy will be taking over the majority of ABR in the fall when James starts full days at school. I'm not really looking forward to Kindergarten. James will be gone all day and I'll barely get to see him. Elliot is also going to be starting PreSchool in the fall. Whatever will I do with my time?! I'm sure that there will always be something to do.

We are settling pretty nicely into our new house. We love all the space we have! Our backyard is fenced and has a playgroud, so Elliot is always wanting to go outside to swing. We've met the neighbors to our East and they have 2 little girls Elliot's age and a baby. Elliot spots the girls outside and he immediately has to go out to play with them. It's great for him to have someone close by to play with (besides mom and dad).
Unfortunately our basement has been getting wet in our family room. It's been very frustrating as no-one ha ever had moisture problems in that house before. 4 times now we've had to stay up late and vaccuum all the water up, pull the carpet back and get it all dried out. We're having someone come out to look and see what the problem sometime in th next week. Let's pray that its not too expensive.

We've been working on getting James a swing for the swingset and a ramp into the house. It's a process as always but it's going well and hopefully we'll get them before the end of summer.

ABR Progress Report

So after my mistake back in February, James and I were able to head to Philadelphia for another round of ABR training. I was pretty excited for this one since we got James's first progress report. The progress report is good! I know that we've already seen changes in his head and trunk control but it was really nice to see the changes in the pictures. I'm still amazed that I'm doing to him! The trainers stressed the importance of continuing on this path and that while he is young I need to really get some good time in to make the changes to his body.

We learned 6 new exercises again. I'm feeling more comfortable with learning new exercises because now I've gotten the basic techniques down and it's just a matter and refreshing those techniques and applying them in a new area. This go round we'll be working on his neck pit (spot at the bottom of your head that meets your neck). Most people have an indentation there and James doesn't. We'll also work on upper back again and middle back along with some shape changes in his head and working on his thighs! I'm the most excited about that. It was actually requested by our physical rehabilitation doctor. I was a little nervous to approach the subject of alternative therapies with her but she was awesome about it! She was very open and even suggested a couple! She asked to see if they had something to help with the tightness in his hamstrings. Last August we did botox to loosen them up and it helped some but of course it wears off. Going through botox injections with James is pretty difficult. They give him the gas to calm you and kinda gives you amnesia but he still fights and gets anxiety with all those doctors and nurses around. I'd rather not do botox unless we have to anymore.

We'll actually be going to another training session in Florida in July. The sessions are pretty close together but that's my fault from missing February's sessions. I'm a little nervous for that session because Andy is going to be learning and pretty much taking over ABR with James. In the fall James will be in school all day and I won't have time with him to do ABR. So Andy is gonna take over and do it in the evening.

A Single Word Made Me Cry

A fw weeks ago the boys and I headed to Rochester and the Mayo Clinic for another check-up with James' cochlear implant. The Friday before we went I was able to have a meeting with his current teachers and therapists and the deaf and hard of hearing teacher from the West Fargo School District. We had decided when we moved that we wanted to keep James in his current school and class until the end of the year. We figured that moving him to a new preschool and then again to a new school in the fall for Kindergarten that it would be too much disruption and learning for both James and teachers to get much productivity. It's worked well and we're now working on getting his new teachers and therapists ready for him. Anyway, this meeting was to talk with the new teacher and let her know James abilities and needs.

While we were having this meeting his speech therapist from his current school gave me the most AMAZING news in the world. That week during school while they were working with James on Yes and No-after the therapist modeled the word "yes" for him he SAID THE WORD "YEA" ..... TWICE...ON PURPOSE! I absolutely couldn't believe it! I've cried several times over. Of course we haven't been able to get him to do it again yet-but how awesome that he was able to do it that one time! I've honestly never even really thought what James' life would be like if he could speak. I can't even imagine the possibilities that would open up for him. I've been pretty cautious with myself and don't try to think about stuff like that too much. We just take one day at a time and go from there.

So in Rochester not much has changed. They were happy with James' progress and re-programmed his mapping. He's had about 8 months of "hearing" growth in about 6 months time-so we're on track and the implant has helped! He's been a little cranky lately when we put it on in the mornings. I'm hoping it isn't beacuse of the sound being too loud. We'll have to watch him closely and hopefully he'll get used to it. In the meantime I'm not going to mess around too much with his growing programs. His growing programs are where I can slowly increase the amount of sound and the loudness of the sound. Each time we go to Rochester they program his implant with 3 growing programs and we slowly work our way through them. I usually don't push him too hard with this because I don't want him to be afraid of the implant or dislike it. We take it really slow and wait to move up until we know that he's completely comfortable where he's at currently. We'll go back to Rochester again in August before school starts and after that appointment we can start only going every 6 months or so! I'll be excited to not be traveling so much with the boys.

Hoppy Birthday James!

James' birthday was just a few days after Easter this year so we celebrated on Easter Sunday. It was nothing fancy or huge but a good relaxing day. We started of course by going to church. The boys behaved themselves really well-especially considering we weren't even inside the church! Since we moved we started going to a new church and it's packed every Sunday! So Easter Sunday they had it all set up for people to sit in the fellowship hall and watch church through Skype! My parents and all my younger siblings came to our place to celebrate James' birthday. My brother Nathan and his family were planning to come but poor Lucas got sick a couple days before :( bummer. Guess we'll just have to arrange a play-date/weekend soon! We had lots of Mickey Mouse items for James! He still loves Mickey. The last couple of years we've gotten James an ice cream cake for his birthday-thinking that ice cream is something that he can eat-he wants nothing to do with ice cream. So this year we tried your traditional cupcakes. He was pretty interested in the Mickey on a stick-but that's as far as that went.
Every year around this time I think back to the week that James was born and what  whirlwind it was. It's amazing to think that this little boy is here with us. I never once thought that he was going to die. Never. But now that I think back, there were so many times that he fought to pull through. Statistics don't usually work in James' favor (I'll save that for another day). That being said, if he followed the mortality statistic like he follows the rest, he shouldn't be here. But he is. And I thank God for it every day! This little boy is so happy and smart. I get pretty excited to pick him up from school every day now because he is showing them how smart he is and finding ways to tell us! Hoppy 5th Birthday James!

Whoops! I'll never make that mistake again!

In February James and I were supposed to head to Montreal for our 3rd session of ABR training. I had the trip planned, plane tickets purchased, hotel and rental car booked, days off of work, babysitters lined up for Elliot....We were ready. The Thursday-Sunday before we left I spent with some awesome ladies at a scrapbooking retreat that we go to each year. It was a great weekend of relaxing and doing whatever I felt like doing without having to worry about kids etc. I got quite a bit of scrapbooking done and I'm finally feeling like I can work on our family album and not just the kids' albums.
So Sunday came along and Andy and the boys picked me up on Chippewa Falls, WI. They had spent the weekend at Andy's parents and visiting friends and family there. We got the Minneapolis and Andy dropped James and I off. We headed to the kiosk to get checked in and guess what I realized at that precise moment-the passport we have for James is just the card=only good for land and sea travel :( I was so mad at myself! Of course the people with the airline were very helpful and tried to get us as close to the border as possible, but there were too many unknowns for me. We didn't know for sure if we'd get a rental car-let alone one big enough for James' wheelchair, we didn't know if that border station was open 24 hours and it was going to be several hours of driving late at night in super unknown territory with an early start the next morning. So we decided to re-book our tickets and re-schedule ABR. Both Andy and I were pretty mad about it. Most expensive mistake I think I've ever made. But now we are set to go to ABR in Philadelphia at the end of April. The people at ABR have been really helpful and this week we'll be connecting via phone to answer questions we have and we'll keep trucking on until we get to go in April.

Hopefully I'll get a post up soon about our new house!!!

In the meantime we are selling Butterbraids and Puffins to help raise $$ to pay for the session fees for ABR. We are amazed at the results we've seen and can't wait to do more! Price for both Butterbraids and Puffins are 1 for $11 or 3 for $30. Butterbraid flavors are Apple, Blueberry Cream Cheese, Strawberry Cream Cheese, Bavarian Cream, Raspberry, Cinnamon, Caramel Rolls (9 count). Puffin flavors are Apple, Blueberry Cream Cheese, Strawberry Cream Cheese, Cinnamon, Caramel, Mozzarella, Nacho. Orders can be placed to emailing me at ajbuettner@hotmail.com, message me on Facebook, or call me at 701-318-9938. We'll be taking orders until March 28 and delivery will be April 4th.

Also, if you're around the Fargo area on Easter we'll be celebrating James' 5th birthday!! Not too much is planned right now but I'm sure we'll have cake and ice cream and some lunch.

Here's a few pictures to hold you over! James and Elliot went to the dentist this week and neither of them had cavaties! James wasn't so sure about other people in his mouth-he even fights mom and dad when we brush his teeth and he does lots of biting during that too. Elliot cried at first, which got James upset-he hates when Elliot cries because he's scared. But we got Elliot settled and he did awesome!

Dentist checking everything out!

a little hesitatnt, James crying for Elliot



Daddy's boys for sure!





watching curling with Uncle Uncle





No cavaties!





Moving!!



Spread the Word to Stop the Word

I'm a day late, but I figured late is better than never for this post.

Most people have used the "R" word out of context and not meaning harm to those who are mentally handicapped or disabled. I"ve done it myself. But that doesn't mean it isn't hurtful anyway. Most people are making fun of friends of family in fun by calling them retarded or by slamming their arm/wrist against their body. Guess what-those actions are my son. I have a son who can't control his movements and when I see someone imitating these motions that my beautiful boy makes in frustration-it hurts. Especially if its a friend or acquaintance. No matter who you are, it hurts but I guess I expect more of the people who are closer to me and my family.

So I guess I'm asking anyone who reads this to think twice before using the "R" word and to help their friends and family to quite using the word inappropriately!

Cochlear Check-up

Last week on Monday James, Elliot and I went to Rochester for a check-up for James' cochlear implant.  Sunday we drove down to Rochester in some not so great weather. It rained all the way until the Twin Citites and once we got there it turned to slush and snow making for some pretty bad roads. Monday morning our appointment was scheduled for 9am but had to be pushed back a little because one of our normal audiologists was sick. We didn't get pushed too far back though :). They checked out his device to make sure it was working correctly and checked his maps. Over the past 3 months I actually didn't change any of James' programs/growing programs. I was really hesitant to do this because he was still crying a fair amount when we put the implant on in the morning. I wasn't willing to increase the sound if he was giving me negative reactions. But I found out that instead of putting the device on his head and then turning it on, I should have been turning the device on and waiting a few seconds before placing the microphone piece on his head. oops :(  Lesson learned. I've slowly been turning up his volume in program 1 now that I've figured that out and haven't had a negative reaction since. They people we work with at Mayo are so awesome. They are very tolerant of our ever busy Elliot and help to keep him busy with toys. When it comes time to put James in the sound booth, James, myself and Alice (one of the audiologists) go into the soundbooth and the other audiologist (the one who was sick this time-Melissa) and Elliot head into the control room and they keep Elliot busy in there with some quiet toys. This time when we put James into the sound booth he did really well. He is responding to voices wonderfully and now even at a softer level than before! Yay! He's responding to some sounds but not as much as voices-but they tell that that's typical. Our new project to work on is now tying sounds to objects-like saying cow and  then "moo" to connect the two of them-using a picture always helps with James too.
We also did a little questionairre that we had done before James was implanted. I don't remember doing it, but his score at that time was a 2-3. The score is pretty simple. They ask questions and each question you answer 'yes' to, adds a point. He's now scoring 7-8 which is right on track with a 3 month old. I was pretty happy about that since he's had it for 3 months. But then they showed me what other kids are doing after they're implanted and they score between 13-33. That was a little disheartening, but then I realized that some of these are kids implanted at a much younger age, they don't have cerebral palsy and they have much more consistent use than James does. That's something we'll have to work on. Part of James' inconsistent use comes from us doing ABR. Anytime James is lying on his left side-the implant won't stay on. So any of this ABR exercises that require him on his left are a no-go for the implant. He also doesn't keep it on anytime he's in the car or on the bus. James also for some reason takes his bottle better if we prop it for him while he's lying on his side on the couch-well just the way our living room is laid out right now this puts James laying on his left side to see the tv while he eats-and you guessed it, that means no implant while he's eating or if he's just lying on the couch. When we get James up and into his new Special Tomato chair, he does ok with keeping the implant on-but he can also manage to knock it off lots too. If you remember the microphone piece attaches to his head with a magnet and he's gotten pretty good at knocking it off on purpose, but sometimes it's just by accident and the way he moves his body. We've found a headband that came with his giant box of supplies that helps keep microphone on, and that has helped a tremendous amount-especially at school. So, I guess all in all, it was pretty successful, but mom and dad and James have lots of work to do.

Our latest family development-WE BOUGHT A HOUSE! We are super excited to be getting out of the apartment. It's not a terrible apartment, but apartment living doesn't exactly agree with us, or fit us. We are moving into a 4 bedroom 2 bathroom home in West Fargo with a heated garage, fenced in big backyard with a swingset, open floorplan, lots of storage and a hot tub. We are super excited and I think the kids will like all the room they'll have to play-inside and outside.We close on March 12-and we'll be super busy right up until then. In February James and I are heading back to Montreal for some more ABR training, I'll be going on my scrapbooking trip with my friends from WI, and of course we'll be busy working and going to appointments and packing our apartment up! I apologize in advance in case I don't keep you all updated! Hopefully you'll see and update about ABR and another with pictures of the new house!



Watching Wrestling-He LOVES it!



Bedtime at the hotel in Rochester

Cheese!

Cheering for the Vikings-somebody has to

Sitting in his Special Tomato chair in a great mood!

We did it!

I never thought I would say this-WE MET JAMES' WEIGHT GOAL! I took James to the physiatrists office yesterday just for his check-up (we go about every 6 months unless we have AFO problems) and lo and behold he weighed just over 30 lbs. I was shocked! I never thought he'd make it. I'm still actually a little hesitant to celebrate because I'm not sure it will last. A lot of times James gains some weight and within a couple months is back to where he was. Hopefully he can hold on to this weight-even if it does make it a little harder for me to carry him.

James came home from the hospital on New Year's Day. Great way to start the year. Of course I was feeling terrible with one of the awful illnesses that's been hitting everyone. Not sure if it was the same thing James had, but whatever it was, it was terrible. We followed up with the pediatrician and they were pretty happy with his recovery. His oxygen levels were still a little low (89-90ish) but they weren't too worried because he seemed to be symptom free and feeling better. Just to make sure though, he has a follow-up X-Ray in February to make sure his lungs are all clear and looking good.

There isn't a whole lot new on our homefront. This past weekend we headed to WI to celebrate Christmas with Andy's family and the kids had a good time. They love to see the animals and gets all sorts of attention. Elliot especially loves to play with his cousins. James was feeling great and did really good at opening his presents! Leave it to me to make the fun stuff double as therapy. It's was good practice for James though. Opening presents requires his to reach and grab and hold on to something and then to let go too. Slowly but surely he makes his way through his presents. Elliot on the other hand was just not that interested in opening his presents. He was too busy playing with all the toys that are at Grandma's house. It took a lot of convinving but eventually he opened all his presents.

Now it's time to clean house and do some ABR and get ready for another trip to Montreal for ABR. In Februay, I get to take a weekend and go scrapbooking with some friends in WI and then immediately after that James and I will board a plane and head to Montreal for our 3rd session for ABR. I'm mostly excited for this session beause they'll do an evaluation and within a month or so after we'll get his first progress report. I'm excited to see the pictures. We've been able to see the head control of James improve so much. I just hope that we're doing more work to his body than we realize.