Driving, A Wedding and some ABR

I'm obviously WAAAAYYYY behind on this post. But here's a quick run-down of our summer vacation. We left on a Thursday night. I got off work a little early, but we only got as far as Watertown, SD. That left us with driving all the way to Clarksville, TN the next day. We drove straight south along the border of Iowa, Nebraska, and Missouri and then over to Illionois and across Kentucky all in one day. Surprising our kids were amazing in the car. Having the DVD player in the van is a lifesaver for sure. The kids sure do travel well. Saturday we had some fun in the pool before getting ready for my cousin Troy's wedding. It was a great ceremony and we headed over to the reception that had an amazing view! The kids had loads of fun dancing and seeing their cousins. It was also a great chance for Andy and I to visit with some of my relatives that we don't see very often. Sunday we went to church but unfortunately had to get back on the road again right away. We drove to southern Georgia and stayed there a night. Monday we only had a few hours of driving and so we decided to stop at Daytona Beach to see the ocean! Elliot loved all the sand but wanted NOTHING to do with the water. James liked it all. James and I hung out in the sand and a little down by the water-but mostly I just sat on the sand and James laid in my lap and we played in the sand. I thought he might get upset because the sun was so bright but he did awesome. I tried my best to remember to pack everything. Well, I forgot floaties for the water, sunscreen, beach towels and hats!! We remembered Elliot's sunglasses and took a short walk to buy some sunscreen and beach towels...but still forgot to get a hat for James.He got to put his feet in the water and he got his legs covered with sand. Elliot only wanted to make a sandcastle. He also went on a walk with Dad down the beach to look for shells-no luck there. About the time we were leaving it started to rain so we finished up our drive to Ft. Lauderdale where we were headed for some ABR training. ABR training went well. This was Andy's first time. He got to meet the trainers and ask all the questions he'd been asking me for months (but wouldn't believe me when I gave him answers). We learned 6 new exercises. Wow-that's a lot of exercises. Our target is to spend 2 hours a day on James but we're finding it difficult. I am the one who is the most comfortable with ABR and the pushing drive behind it...but I don't see James :( The ABR time I do spend with him is while he's sleeping after I get home from work. We spent 2 days doing ABR and got in a little time in the pool while it wasn't raining. It rained, and I mean rained, all day both days. There were a few flash flood warnings around us. Unfortunately we weren't able to get out and see much because of the rain but just relaxing in the pool and hotel room was ok too. After ABR we headed back to ND. We made it in 2 days! We drove as far as Clarksville, TN the first night and then the rest of the way home the second day. It felt good to be home.

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.

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.

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!!



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.

Christmas, Illness, Resolutions and Family

Where does the time go! Here it is December 31, 2012 and I'm still behind. This past year has been a busy year, but an amazing year for our family and James. The most recent development, that most of you probably know, is that James has been in the hospital since December 27. James hadn't been feeling well since a couple of days before Christmas. The Sunday before Christmas James was extremely constipated. We tried all the usual things and even progressed to suppositories but we had limited success. Monday, Chistmas Eve, he started a cough and by the time we were getting ready for midnight mass James was absolutely miserable. We took him to the ER and they gave him an enema and milk of magnesia to help with the constipation. A couple hours later he was successful but the next day he was still feeling pretty crappy. He wasn't too interested in opening presents and started running a fever about 99F. By the time Thursday came around and Tylenol wasn't helping I decided to take him in. His lungs sounded kinda crappy, but the x-ray didn't look too terrible. However, his oxygen saturation levels were in the 80s. They should be close to 100. So he was admitted to the Peds unit at Sanford Children's Hospital here in Fargo. They've mostly just been supporting him with oxygen but they also decided to give him some IV antibiotics. They think it's viral (the flu test was negative) but they like to cover all their bases. He's steadily been doing better. At this point the fever is gone and he's been on oxygen since midnight 12/31/12. They usually want them off oxgen for 24 hours before they discharge them, so hopefully tomorrow James can come home!! Let's keep our fingers crossed.
With the month of December has come lots of traveling and busyness. Because of this, we've been slacking on our work with ABR. That takes me to my first New Year's Resolution (yes I'm doing them!). I want to get in more and more time with ABR and get the most out of this therapy that has been awesome for us and James so far. We'll be heading back to Montreal at the end of February for another session. January is a little busy for us too, but I'm determined to get in lots of hours.
Of course I'm going to be cliche and another one of my resolutions is to lose weight. Since we moved to Fargo in April 2011 I've definately been putting on some weight and this coming fall I'm standing up in one of my best friend's wedding and now I've got the incentive-now I just need to get the get up and go.

Boys with mom and Santa gifts



Opening Presents

Grandma has the magic touch 

Auntie Julie got married 12/21/12

Daddy and James napping on Christmas Eve

Elliot likes to help James open his presents...

Especially when it's stuff he wants!

I think overall in 2013 our whole family is hoping to come together more and learn better how to help each other and not just get through every day, but enjoy it, and enjoy it as a family. Sometimes I think we get so wrapped in every day life of working, school, therapy, house chores etc that we forget we're a part of a family and we're supposed to be enjoying life ando ur ultimate goal is to help each other get to heaven. This next year I'd like to focus more on our family and God. We have lots of hopes and dreams for the future and I like to think that if we trust in God and if it's meant to be, that he'll help see these hopes and dreams come true for our family.

ABR-Advanced Bio Mechanical Rehabilitation

I'm not sure what's taken me so long to write this post. I'm really excited about ABR (Advanced Bio Mechanical Rehabilitation) and I can't wait to see our hours of work on James and how it will improve his quality of life.

So, in August James, my parents, my little sister and brother and myself headed for Montreal. Long car ride! James did surprisingly well considering he hates long car rides. We watched a lot of movies (or just a few movies a lot of times) and even got a new one on the way.

We spent 3 days in Montreal. We arrived the Sunday evening before ABR training began. Monday morning my mom, Abbey, James and I headed to ABR. The morning session was more of an introduction. They spoke to us/taught us different things about Cerebral Palsy in general in addition to teaching us about the basic principles of ABR. My mom really learned a lot about Cerebral Palsy in general she said. One of the big things is that James doesn't bear weight. If you think about it, we can all just sit and be bearing weight and we don't have to consciously think about it-our body just does it. Even in a young baby-if you sit the baby on a table and give it support to keep it's head up and torso-it sits on it butt and bears weight. In kids with CP, like James that doesn't happen. If you try to sit James down-he doesn't sit on his butt and he doesn't bear weight. He falls over and leans this way and that. He almost kinda sits on his tailbone. Another concept is compressional strength and weakness. James obviously has weakness. The easiest way for us to see this was they took a picture of a healthy child-pretty young (a 2 or 3 month old maybe) and hold the child by the chest. The child keeps it's "figure" but if you do that to James his whole body collapses. His ribs collapse in and his head is bent over and his shoulders slump. Hopefully one day I'll have some pictures to show-that's easier to explain it.
In the afternoon all we had was an assessment. It was pretty thorough and they took thousands of pictures. They'll use these pictures to help assign/prescribe exercises and also to gauge improvements.
The next day, just James and I went back and we began our training. We learned 5 different exercises-1 for his chest, 1 for his upper back, 1 for his neck and 2 for his abdomen. The staff were amazing and I have such hope for this to improve James' quality of living.

On our way home we took a day to spend at Niagara Falls! How beautiful. James doesn't normally like sightseeing or hot weather but he did like Niagara Falls. I think it helped that the water/mist from the falls kept his cool. He didn't particulary like the boat ride because of the poncho's but he did pretty good the rest of the time.

Looking for Something More

In the past few months I've been researching a new therapy called Advanced Bio Mechanical Rehabilitation (ABR). I found ABR through another Special mom's blog and have been enamored with it. I've only found good things about it. Unfortunately, it's still in the research stages and insurance won't cover the cost. The other unfortunate thing is that we have to travel to Montreal to be trained.

The following is from http://www.blyum.com/

• ABR stands for Advanced BioMechanical Rehabilitation.
• ABR is a unique biomechanically based rehabilitation approach for children and young adults with brain injury that brings predictable recovery of musculoskeletal structure and motor functions.

ABR is the method of structural correction of musculoskeletal deformities. It is a hands-on method performed by the parents who learn the ABR technique and receive individual prescription of applications from the ABR professional staff.

• ABR is a method that re-builds even the most severely distorted musculoskeletal structure
• ABR redefines "rehabilitation" – ABR improves musculoskeletal structure so significantly that normal motor functions recover spontaneously, making special training and management for "motor disabled" unnecessary.

We use no pharmaceuticals, no electrical instruments and no surgeries - ABR is a hands-on method of manual applications to the child's body, based purely on biomechanical principles.

ABR biomechanical reconstruction of the musculoskeletal system follows the path of normal motor development - starting from the neck and trunk and later descending to the periphery (arms and legs).

ABR provides planned progress of the musculoskeletal structure and function through predictable stages. Results are predicted in numbers of hours of exercises done and changes in the alignment, mobility, size, tone and strength of the child's body – specifically in the chest, abdomen and the pelvis.

ABR is more than just a new rehabilitation method; ABR is a comprehensive philosophy of the child's recovery. The cornerstones of the ABR philosophy are fundamental biomechanical principles of the human body's growth and development. Respectively ABR takes bio-electrical and bio-chemical factors into account only through their biomechanical manifestations.

This biomechanical approach allows us to have exact guidance for every single movement. Every single ABR application to a child's body is precisely calculated and adjusted for each individual patient.

ABR opens a new dimension in the treatment of the mildest to the most severe motor dysfunctions in the sense that it gradually brings changes to the mechanical and electrical structure of the muscles, thus allowing spontaneous developments of motor function.



We've gotten our pre-assessment back from ABR in Canada and we are ready to go learn but first we have to come up with the $. The cost for the first year (4 visits to Montreal) is $7700. We are currently selling Butter Braids and Pizza Corner Pizzas to help pay for this therapy and the cost of travel to either Minneapolis or Rochester for James to get cochlear implants. If you'd like to buy a butter braid or Pizza Corner please Facebook me, email me at ajbuettner@hotmail.com or simply give me a call! Every little bit helps!

For more information on ABR you can visit http://www.blyum.com/ or http://www.abrcanada.com/