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.

Keep On Truckin'

I haven't been posting much-and yes I'm going to use the "too busy" excuse again! October was a whirlwind for our family.
Of course we started the month out with the cochlear implant surgery which went well. Then we had a week of "normal" which school and outpatient therapy at Sanford and of course sticking ABR in any time we can.

The weekend of October 19-21 is one of my favorite weekends every year! My mom, her sisters and their daughters all go scrapbooking for an entire weekend. Not only do I get to scrapbook for a weekend and get a day or two off of kid duty, but I get to spend the weekend with some awesome women who inspire me to be better in so many ways from raising my kids, being good to myself and deepening my faith in God. I have to say that my mom and her 5 sisters have an awesome relationship and I admire them all so much. They are all strong women who've raised kids (or are still raising kids), worked hard for their families (whether at home or out of the home) and have such deep faith in God. I can only hope to be like them all one day. It's always fun to chat with women who are like-minded-and bonus-we get some scrapbooking done!

Immediately following scrapbooking we headed to Rochester for James' cochlear implant launch (turn on) which I posted on last time. I still haven't gotten the video up-sorry! For those of you who are my friend on Facebook it is there!

Just a few days later we headed to Devils Lake to celebrate my Mom's 50th birthday! It was supposed to be a surprise party for her-my Dad did most of the arranging but she came home early and caught us! Of course she said she was suspicious when my Dad got up early on a Saturday morning and started cleaning and then when she got home and Alex was outside cleaning the yard she knew something was up! Nevertheless we had a good time and a great turnout of family and friends! My mom is an amazing women who has an endless supply of energy (at least it appears that way). In her 50 years she graduated from college, raised 7 children, has an awesome career that she loves, goes curling, has been on numerous boards for things like United Way and Parish Council, always been active in the church community, and so many more things! She's just an awesome woman and role model who I aspire to be like.

Then it was back to Fargo for more working, school, ABR, and therapy.



Watching Netflix in the hotel in Rochester

 OH! and HALLOWEEN! James still seems indifferent about Halloween. I'm not sure he really understands, but he does like to see all the kids and their costumes! Elliot on the other hand was super excited about Halloween this year. We did a little explaning about it and of course he had all the TV shows to help. We had picked out 2 costumes and let Elliot pick which costume he wanted. Wouldn't you know he wanted Ironman. For about a week before Halloween he was constantly taking us to his closet and showing us his costume (and James' costume too). Halloween morning when I told Elliot he could put on his costume, he popped out of bed so fast! Of course that was a Wednesday morning, which also meant that we had outpatient therapy at Sanford and like every other Wednesday morning I woke up late and we were RUSHING to be on time. Elliot was ecstatic about his costume and wore his costume and mask all day long. We didn't do much trick-or-treating but we did do the whole mall thing. Of course it was busy, but not too bad. James got really excited when I'd show him his bucket full of candy. He kept trying to get something  out of there-darn spactisity and tightness.



Being Ironman is hard work



Our Ironman and Spiderman



Watching his own Netflix at the hotel in Rochester



I'm Ironman!



Sleeping on the way home from Rochester





"Ironman has never looked so sexy as he does today"



coloring in the waiting room at Mayo Clinic

November started with a bang-Elliot and I got the stomach flu :( Thankfully we both recovered fast. November 7th we had another appointment with the cochlear implant team at Mayo. So November 6th Elliot, James, and I headed to Rochester. It went well overall and James is hearing well. The only problem is getting him to keep the implant on. If you didn't already know, it sticks to his head by a magnet and he easily knocks it off by turning his head and hitting the implant with his headrest. Sometimes it's accidental, but a lot of times it's on purpse either because he doesn't want it on or he feels like being funny. He definately knows what he's doing though. I tried a surgical tape and it works but James HATES it. I'm moving on to trying to find some liquid adhesives or even possibly the same things they use to keep wigs on. It will be interesting to see what we come up with.

As for our next endeavor, James and I are headed to Philadelphia, PA for some more ABR training next week. We'll fly out on Tuesday and back on Friday. I'm a little nervous for James to fly. I hope he does good. I'm sure security will take us awhile with James' wheelchair, cochlear implant (I do have a card for that) and the excess liquids I need for his medication and Pediasure. Wish us luck!


These are just pictures I could get off my phone-maybe I'll get the good ones off my camera sometime...don't hold your breath though. I'd hate to be responsible for people passing out.

SUCCESS!

Monday October 22 was the day of truth for James. We turned on his cochlear implant. The first thing they did was run some impedence runs to make sure the implant and electrodes were working. Those all went really well.  They explained that the turn the implant on in levels called "units". Units of what I have no idea...but units they are. The impedence runs they did were at a level of 30 units and we saw no reaction (not uncommon at all) so we knew at 30 units he wasn't hearing anything. Most people when they are done with fine-tuning the programming are between 150-350 units. So they slowly increased it from 30 units to 35 and so on until we saw some response. He let us go up to 100 units and he wasn't too fond of that so we backed off to 90 units and left it there for the first day.
To say it was exciting would be and understatement. Watching that amazing little react to sound for the first time was incredible. You could see the look on his face-a little bit of confusion and him looking around. We even got a little bit of a smile after a bit. We're so excited for the world that this opens up for James. Even if he won't be able to talk to us, he'll now be able to hear us and the world around him. I can't even imagine not hearing my mother's voice or the sound of rain. How exciting for him!
The first day we left it at 90 units and kept the implant on as much as we could. He did really well with and didn't seem bothered by the sound. At one point he was taking it off constantly-but he thought it was funny and a fun game to play with mom.
The second day we put it back on again and headed to the doctor's office. While in the waiting room Elliot was playing and there was a little girl there too. She wanted to know his name and her dad told him to go ask him. She asked him and he proceeded to ignore her. A few minutes later she tried again and this time he actually answered. "My name's Tony" Now, if you know Elliot you'll know that he loves Ironman (about as much as Spiderman) and of course Ironman's name is Tony Stark-so that's where he got it from.
Back to James-once in the office we slowly increased the units. We watched him for negative reactions to see if we'd gone too far. They were hoping to get up to 120-130 units-he blew them away and allowed them to go up to 150 units! He got up to 170 units before he got really mad. So they left it at 150 and slowly each day we increase the volume in the morning and see if he's ok with it. If he is we leave it there and if not we go back to where we were before. We'll be back to Mayo the 7th of November and hopefully we'll be increasing some more. We're hopin to be up to 170 units by then.
Everyone is so excited for James to hear! His teachers, therapists, friends at school...we're so excited for him! I'm attaching a couple of pictures. one of them picture that shows the "microphone" piece that goes on his head (it attaches by a magnet-the piece inside his head has a magnet) and the cable connects it to his processor (which contains the programming, the volume and sensitivity). His pieces are pretty cool. Right now we're using green, but we can also switch it out to blue, white or beige. The great thing about it too is that it's waterproof! We have to use certain pieces, but that'll be fun for bathtime and swimming!

I'll try to get video up-there's one on Facebook right now.

I'm also putting up his school picture-super cute!

Back Home Again

James and I have been home since last Thursday. His Cochlear Implant surgery went very well. He did very well with the anesthesia and it seemed that he had more concerns about heart rate levels instead of breathing. His heart rate was kinda high for awhile, but not out of control. It was mainly due to pain and anxiety. They tried to hold off on giving him any narcotics because that would depress his breathing. He did very well. They kept him overnight in the hospital at St. Mary's just to keep an eye on his breathing and such. He was a trooper and by Thursday morning at 9 am they said we could go home!

Coming home he had some drainage out of his ear for a couple days which is pretty normal and also tells us that the tubes in his ears are working. He's been in a good mood, eating well and happy. He went back to school today so hopefully that goes well (I'm sure it will).

Now we just wait until October 22 when we go back to Mayo to turn on the implant!

It's Finally Here!

Monday of this week James and I headed to Rochester, MN. That boy is getting really good at traveling! I get pretty worried when it's just the two of us because if he gets hungry or upset I have to stop somewhere. But, no worries. That boy loves his movies and if we stop once to eat he's usually pretty good. Tuesday we started the day with a Speech/Pathology consult. It wasn't really anything new. We talked about how James communicates right now, what he's working on in therapy at Sanford and at school and what steps we should take after implant. She definately thinks that Augmentative Communication is the route to go with James. That route definately scares me. There are so many options out there and it's so expensive. How do we know that what we choose will work? Because once we purchase one-we're stuck with it.
The second appointment of the day was James' MRI to verify that he has an auditory nerve and to check the anatomy of his head. He went to sleep really well. It took about 2 hours. He didn't wake up as good as he usually does. He had some "laryngospasms" and it caused some mischief and they were pretty concerned about doing surgery on Wednesday considering the laryngospasms and his previous airway problems. Once I got back there he seemed to be doing well, we gave him a nebulizer and got packed up to head to the next appointment. The next appointment was kinda fun. We got to pick the colors and accessories for the implant! We chose lime green for one and blue for the other. We get a back up processor so that James is never without hearing. Then came the appointment with the surgeon. I wasn't sure what to expect. I expected the MRI to be normal but after speaking with the anesthesiologists that did the MRI I was worried they would cancel surgery. He was ok with proceeding :) We did decide to put the implant on the left side instead of the right like we originally planned, because the right side has some fluid in it right now. We would expect a better outcome with the left that has no fluid. In a few weeks we'll need to have his ears looked at to make sure his tubes are working in that right ear.

So, today I'm sitting in the waiting room. James went into the OR around 8:00 this morning and surgery should take about 2 hours. Anesthesia had a pretty clear plan about how they wanted to handle him so that makes me feel better after what happened yesterday. We aren't sure yet if he'll get discharged today or if he'll have to stay the night. Only time will tell. In the meantime, I'm praying to God for strength for James and his lungs and for all that are caring for him today.

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.

Surgery is Set!

A few weeks ago James and I went to Mayo Clinic in Rochester to have him evaluated for cochlear implants. The first day we met with 2 Audiologists from the cochlear implant team. We did a lot of talking and discussing. We talked about James medical and hearing history, how he does now with hearing, what cochlear implants do, what we could expect from a cochlear implant and on and on. They also did some testing with James. The testing was somewhat similar to what he's always had done but a little different. Instead of putting him in a soundbooth along and watching for his reaction they had one person in the control room and one person in the soundbooth with him. That way they could watch his eyes and movements more closely to get a more accurate read on what levels and frequencies he can hear.
After doing the testing and reviewing the Auditory Brain Response testing we did in Fargo, they agree with the diagnosis of Auditory Neuropathy Spectrum Disorder. They took a look as his ABR that was done in Marshfield the first 2 times before he got hearing aides and it appears he's had Auditory Neuropathy all along. This upset me quite a bit. As they explained to me how to read and audiogram and ABR it was quite clear to me that he's always had Auditory Neuropathy. I felt like we've lost all these years doing something that hasn't helped him at all. I realize that had we known this years ago it doesn't mean James would be speaking, but I do think he'd have much better listening skills and his communication could be in a better place than it is right now.

But I can't dwell on that and I have to move on. And so we are. We had a second appointment with the cochlear implant team Audiologists and they gave us some insight into what we could realistically expect from James with a cochlear implant and what kind of follow-up and therapy he'll have to do. They also reviewed the different types of devices. There are 3 devices, all pretty similar. We chose one that can be worn off the ear and is also waterproof and can be worn swimming and in the bathtub.

Lastly we saw the surgeon. That was a pretty quick and painless visit. James will have an MRI the day before surgery and if he has an auditory nerve, the cochlear implant is a go the next day.

October 2nd at 11am will be the MRI and October 3rd will be surgery! We can't wait!

Family Vacation

For Christmas 2012 my parents were generous enough to get us all Twins tickets! So off to Minneapolis we went. The first day we left Fargo midday and did a little shopping in Albertville with my family. While we were there I finally bought James some tennis shoes to fit over his new AFOs. James hasn't had shoes in a couple of years because his AFOs have had grippers on the bottom-he didn't really need shoes. As winter time came this past year I realized that we were outside more getting on and off the bus and the poor kid had just socks and AFOs on! For the winter we used a blanket to cover his little toes but this coming year he'll have shoes!! Shopping for shoes to fit over his AFOs was interesting. I found the easiest way to do it was to try shoes that tied instead of velcro-I just found it easier to make the shoe as wide as a could. We had the lady at the shoe store measure his AFO and then we tried Wide shoes with shoelaces. First I loosened the shoe up and fit the AFO in. Once I knew I could fit the AFO in I tried to the shoe on while James was wearing the AFO. Definately a learning experience. On the easier end of shoe shopping, Elliot got himself some Spiderman shoes. Man does that kid like Spiderman! He was pretty excited.

That night we just hung out by the pool and ate supper as one big family in our parent's hotel room. The pool was pretty awesome for kids. The kiddie pool was a walk in pool that was heated with a pretty neat slide. The kids all loved it! James and Elliot even went swimming in the big pool with mom and dad and had a blast. James loves swimming! I've been meaning to get him into lessons-we just haven't had much free time! Elliot thought swimming was great and kept saying "kick kick kick paddle paddle paddle" He even started repeating that as we watched swimming in the Olympics this past week!

The second day we headed to the Mall of America. We did a lot of walking and a little shopping. The kids' favorite part was the Disney store. Elliot is all about the Marvel comic guys right now and we couldn't get pas the first part of the store without stopping to look at Spiderman, Iron Man, Hulk and Captain America. Of course later in the store we got to see Mickey Mouse stuff which made James' day. The kids got so tired they took nap in their strollers.

After the Mall of America we headed to Target Field to see the Twins play. James loved it! Elliot liked it when he sat still long enough to watch. To no surprise the Twins lost, but it was a pretty good game. They tried to make a come back at the end, to no avail.

Wednesday we took the kids to the Como Zoo. It was pretty good and free! The kids love looking/seeing animals, Especially James. It's fun to watch Elliot see them all too since he's learning the names and sounds that go with each animal.

All in all it was a good trip. Short and not far from home, but still good.

Short Notice

I got a bit of a short notice on some appointments. Mayo Clinic called Thursday afternoon to let us know they could get us appointments on Monday, Tuesday, and Wednesday. Wow....Of course I was so excited. I couldn't believe we finally had appointments but with only a couple days notice I wasn't sure it was really going to happen. First order of business was to get off of work....Sue and Marie at work performed a miracle for me and I got off work! Thanks a million to the people who are working night shifts for me! After getting off work I figured it would all be easy from there. We got a hotel room booked, we got the appointments confirmed, I made phone calls to our insurance to inform them of appointment dates. Lastly I arranged for Elliot to go visit Grandma and Grandpa Kitchens for the week. Auntie Abbey will watch him during the day. This was a huge load off my shoulders. It can be pretty hard to focus on James and the doctors when I have Elliot at appointments. He's not usually a bad kid, he's just busy and explores everything he can in the doctor's office. It can be a bit distracting. I'm a little sad that I won't see him for so long. He's never been away from us more than a couple of days (and that was pretty recent). He'll head to Grandma's tomorrow and we'll get him back on Saturday when we all head to Minot to my cousin's wedding.
So I guess James and I are heading to Rochester, MN to the Mayo Clinic on Monday. We'll have only one appointment each day but I think they'll each last a couple of hours. I'm not exactly sure what each of the appointments really are or what we're doing. I'm not sure if it's just talking about James or if it's testing of some sort that we haven't done here in Fargo. Wednesday we'll head back home so I can get back to work.

We recently took a trip to Minneapolis to see the Twins play. James loved the game! I'll post more details and pictures soon (hopefully while we are in Rochester since I may actually have some free time!). I'll also give everyone an update on our fundraising!

Cochlear Implants

We finally heard from our Audiologist's office this past week. They've been in contact with Mayo Clinic in Rochester and sent them all James' information and are currently reviewing the file. They'll hopefully be calling the next couple of days to set up evaluation appointments. They were able to tell us that it'll be a couple day's worth of appointments. Yikes! Andy doesn't get too much PTO at his job so I hate to have him take 2 days off for evaluation appointments when we know in the future that there will be surgery in Rochester. So hopefully (if timing works out) my fabulous friend Heather will accompany me and my boistrous boys to Rochester.
I'm not really sure what the appointments all entail or what they're going to do with James for 2 days. I thought we'd pretty much done all the testing that had to be done here in Fargo, but I guess not :S

James had a pretty busy day this past Wednesday. He went to school in the morning and right after school we headed over to Sanford for his outpatient feeding and language therapy. After therapy we headed down to Healthcare Accessories to get James wheelchair looked it. We were concerned because we can't keep his hips back in the chair. Then he ends up sitting in the pelvic tilt (he doesn't mind at all) but it's not good for his posture and developing trunk strength. They were able to added a piece of foam under his thighs and hopefully that helps. They also did a little growth adjustment. While we were at Healthcare Accessories we had James AFOs adjusted. They were leaving nasty red marks on the tendon behind his knee. He also got his new hand/wrist splints. James tends to put his hand in a closed fist with his thumb between his pointer finger and middle finger. Not a good thing. So these will help keep his hand open and his thumb out.

In other family updates:

Andy is still playing ball a couple nights a week. My cousin's daughter has been watching the boys for us! It's been fabulous and I'm sure a big learning experience for Tracy.
Andy and I were able to slip away for a day and leave the kids with my parent's for a weekend. We ran the Warrior Dash with a couple of my friends in Hastings, MN. Wow was that hard! it was an extreme 5K with obstacles. The obstacles were pretty fun but there were tons of hills to run up.
I'm still busy busy busy at work and taking kids to appointments and scheduling our lives!

Elliot....what can I say. He's two. He's a boy. Wow! He's super busy and definately destructive. He gets into everything. EVERYTHING! We think we have everything out of reach and locked up and he somehow finds more stuff or finds a way around it. Most recently he somehow got the container of Nesquick strawberry powder (we add it to milk for Elliot so he doesn't drink all James' Pediasure) and dumped the WHOLE thing onto the carpet......

I've added a few pictures :)

Andy and I after running the Warrior Dash

James watching fireworks!

got a new movie....with talking animals

wearing mommy or daddy's Warrior Dash helmet!

another Elliot mess

He was so excited to cilmb on there!

Fun day at the park

Now that James has new AFOs we got him back up in his stander!

Is it inevitable?

Today was James CTC clinic (Coordinated Treatment Center) where he sees most the providers at once. One of the good things/bad things about it is that we don't always see the same doctors. I think seeing the same one is nice because they know his history. The nice part about seeing different doctors is that we get a different point of view. They are usually pretty good about reading up on his history at CTC clinics because they know these kids have lots of things going on.

Back in December we were discharged from PT because we weren't seeing any progress. So today we actually got assessed by a PT. It sounds like we'll be going to back to PT and this we'll be going 1-2 times per week. Hopefully we'll go twice. I've been noticing how tight James' hamstrings have gotten and I'm quite concerned that he'll pop a tendon or that he's in pain. I can barely stretch him and it's always unpleasant for both of us. So hopefully a more aggressive approach to PT will help with those hamstrings.

We got to skip seeing Speech and OT since we see them weekly.

We saw a new physiatrist (physical medicine/rehab) doctor today. I liked him a lot. He was pretty happy with James and his new AFOs (we got them last Friday). We are going to head down to Healthcare Accessories and get his wheelchair assessed and see if we can adjust it for some growth and hopefully at the same time we find a way to keep his hips in the chair where they need to be. He tends to push his hips out resulting in his whole body slumping down in his chair = not good. We're also going to try and do some botox in James' hamstrings and see if that helps his extreme tightness there.

We chatted with the social worker a bit and saw the Pediatrician. We saw a new one today and liked her lots. She was pretty happy with James and helped facilitate some communication with the audiology department to get things moving on the cochlear implant front.

Dietician.....my least favorite. Wouldn't you know little James lost a few pounds again :( Losing weight isn't really an option for James and of course they discussed a G-Tube again. They are giving us another goal-by his 5th birthday (April 2013) the goal is 30 pounds-and stay there. We'll see how that goes but I feel like we've had this conversation over and over for the past 2 1/2 years. We are constantly worrying about James' weight. I get pretty anxious when it comes to weighing James and most the time I don't really want to know. I had thought we'd been doing pretty good and here we'd lost 2-3 pounds.

Overall I guess not a bad day. We've had worse. Although if you were to ask little Elliot he probably would've told you that he was bored and couldn't wait to get out there. He sure is a trooper going with to appts all the time. For the most part he behaves and plays pretty good. But as you would expect from a 2 year old boy, he gets pretty bored being cooped up in waiting rooms.

Just a reminder that you can order Pizza Corner Pizzas and Butter Braids through July 20 and they should be here August 2nd. We'd like the money right away if possible. Thanks again everyone for your support!

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/

Back to Where We Started

This past Wednesday James had a routine ABR done. An ABR is an Auditory Brain Response test done for hearing. They're able to record the brain's response to sound. James had one or two of these done when he was initially diagnosed with hearing loss. The new audiologist here in Fargo thought it would be a good idea to have one done now because we're in a new place and it's been awhile since we've done one. I wasn't expecting much from it, just for them to say he has a mild-moderate hearing loss-what we've thought all along. Boy was I wrong. I guess you could actually say I was devastated by the results. Here we've using James' hearing aids religiously and thinking that he hears us when we talk to him, but he doesn't. Or he might. We just don't know. The testing of his ear was pretty normal. His ear works the way it should, but the brain resonded to nothing. Nothing. That is far from what I thought. They think he might actually have Auditory Neuropathy which is a term we heard when we first started working through James' hearing problems in November 2008. I talked about it a little bit on James Caringbridge site and since they diagnosed him with a hearing loss and then fitted him with hearing aids I haven't thought much of it. So Auditory Neuropathy...essentially James' ears work fine but the sounds doesn't make it to his brain or it gets jumbled and doesn't know what to do with it. There are definately times when we're positive James has heard us...but that would fit with this diagnosis as well...his brain at times may actually make the connections it needs to and he hears fine. They're strongly reccommending James get cochlear implants. I'm waiting for a call from the audiologist. They wanted to go over James' previous hearing tests and chat about it. Our options for cochlear implants are University of Minnesota and Mayo in Rochester. We'll wait to hear what they reccommend and go from there (and see if insurance makes us go to Sioux Falls).

I feel like we've lost the past 3 years in terms of James' hearing. Could he talk by now if we picked this up sooner? Would he still be nonverbal because of his Cerebral Palsy? Is he nonverbal because of his Cerebral Palsy or because he can't hear? I guess all we can do from here on out is start fresh and focus hard on getting his implants and his speech therapy after.

It Could Be Worse

If you know me well, you know I watch a fair amount of tv. One of my weekly shows is Private Practice on ABC. It of course is about doctors and their medical practice and their personal lives that tend to involve a little too much falling into bed with random people. Anyway, watching last week's season finale gave me a pretty good perspective.

I've never really asked "WHY". Why is James the way he is? Why was he born early? Why did he have a rare complication of being intubated? Why did he develop Cerebral Palsy without have a brain bleed? Why are his lungs so weak? Why Why Why? I feel like I just have to accept it because if I keep asking why I'll only dwell on the bad things and keeping wondering WHY when I could be spending that time looking for new therapies or stretching James or reading books with him or just cuddling with him.  Still there are times I wonder if life will get easier for my baby boy. If he'll ever walk by himself, talk on his own, sit by himself, know how much I really love him.

This past week on Private Practice one of the main characters had a baby. Her baby was born without a brain. Within minutes of her baby being delivered he started having problems breathing and she handed him over to doctors to harvest his organs to go to other tiny babies so they could live. She got to hold her baby boy for minutes, and he was gone.

I get to give my son medicine every day to help him breathe. I get to give him more medicine so he doesn't gag and aspirate his food. I get to give him even more medicine to relax his muscles. I get to stretch his tight tight muscles and hear him cry because it's painful. I get to watch him lay on a bed in an OR about to have someone take a scalpal to him in hopes it'll make things better. It could be worse.

But you know what else I get to do.  I get to hold my baby boy every day. I get to see his gorgeous smile. I get to cuddle with him before his nap every day. I get to see the joy on his face when his favorite movie comes on and hear him laugh. What a beautiful sound. I get to watch him laugh at the silly things his little brother does.

It could be worse. I could have a son I couldn't take care of my own. I could have a son who has a trach and can't vocalize at all and needs a ventilator to live. I could have a son who's in pain every day all day. I could have a son who has no quality of life. I could've lost my baby boy before I even got to know him.

I have an amazing little boy. He loves me and I love him. He can smile at me and laugh. He loves to read books and be tickled. He doesn't like new people, but he loves to cuddle. This little boy is my life and I thank God every day that he kept my tiny baby alive and allowed me to get to know him and love him. It could be so much worse.

Elliot

I don't talk much about Elliot on here, so I figured that since this is our family blog, I'd dedicate today's blog to him!

Elliot is a typical 2 year old boy. He loves cars, cows, legos, playing outside, cuddling and Mickey Mouse. If you know Elliot at all, you know that he loves cows and once he sees one, he can't stop talking about them. He talks about them, he'll tell you what they say, and he'll tell you he is one. One of my favorite Elliot moments was when he was playing horsey with his dad. While on his dad's back and he looks at me and says "Mom, I'm a cow!" I said, "No, you're a cowboy." "No Mom, I'm a cow"
He just loves cows.

Elliot is just about 2 1/2 and what a fun age. All the normal milestones are new to us, since James doesn't meet the typical milestones. He talks a mile a minute in his own language and no one has a clue what he's saying. Every once in awhile we can pick a couple words like mom, daddy, cow, car, Mickey and shoes.

Being pregnant with Elliot wasn't the easiest thing I've done, but I would do it again in heartbeat. Warning: if you're squeamish, stop reading here. One of the first things I had to do was get a cervical cerclage. The reason James was born premature is because I have and incompetent cervix, meaning that as the baby grows and gains weight, my cervix can't handle the weight and will start to funnel, thin, and dilate on it's own. So, a cervical cerclage it was. The plan was to give me spinal block but of course that didn't work so general anesthesia it was. When I woke up there was a substantial amount of pain that I wasn't expecting. All the procedure really is, is putting stitches (with super strong string) keeping my cervix closed. So I wasn't really expecting any pain, stitches aren't too big of  a deal. Well after resting for a couple of the days the pain went away and all was back to normal. Part of getting the cerclage was having an ultrasound before the procedure to verify dates and after the procedure to check the cerclage. So as planned we had an ultrasound at 14 weeks to check on the cerclage. Per our usual, something was amiss. There was an area behind the neck that was collecting extra fluid. That can be an indication of Down Syndrome, or other chromosomal abnormalities like Turner Syndrome or Edwards Syndrome. Most of you, I'm sure, are familiar with Down Syndrome. Turner Syndrome affects mostly girls and I believe they have some developmental delays and and are infertile. Edwards Syndrome, Trisomy 18, was the scariest. Most of these children don't survive the pregnancy and the ones that do-most die by their first birthday and they have extreme mental retardation. Trisomy 18 spent a little time in the news lately-Rick Santorum who was running for the Republican Party candidacy has a 3 year old daughter with Trisomy 18. All I have to say is AMAZING. She's beat so many odds by making it so far, but she does have many medical complications. Anyway after the ultrasound we were given some options. We could do nothing and see what happened or we could have an amniocentesis at15 weeks to have chromosome testing done.
I decided I needed to know and so for the next week I was on pins and needles. The amnio went well with no complications-odd sensation though. Then it was on to more waiting. I think it was about 2 weeks later that we got the results, they were normal.