The New Arms are fantastic!!

We finally made it to the end of the process...well almost. We picked up Ashlyn's new helper arms yesterday.

She has a new PINK swim arm which is lightweight and, of course, waterproof. Now we just have to find a good indoor pool to give a try. She really likes this one since it will help her swim and she has and incredible interest in Winter the Dolphin right now, so she totally sees the benefit of this one. Though, I must say, she is quite and incredible swimmer without it. I think she maybe a candidate for a swim team already. She's amazing!

Dr. Keith told her about the pink dolphins and we are excited to learn more about them too. Hmmm...maybe she will be a dolphin trainer some day. That would be okay with this momma!

We also got her new myoelectric arm. Wow. It's fantastic!

It will take quite a bit of adjusting and practic to operate it, but I think she'll get the hang of it in no time. It's a little heavier than the swim arm but once she learns to use it as a tool, I have a feeling she will become a super user.

She learns things so fast (like how to work my phone, how to navigate the internet and computer games) that I think this new helper arm will be a breeze to learn.

We are going to start Occupational Therapy as well, so that might give her an added incentive and insight on how to use it and how it can benefit her in some activities.

Hanger Prosthetics has been absolutely fabulous to work with. I would ABSOLUTELY recommend them to anyone that needs prosthetics or orthotics. Our appointments were easy and fun. We really liked the prothetist (Dr. Keith) we worked with also. In fact, the entire office team was great. So fortunate to be able to do this, and close to home. Very thankful to everyone that had a part in making this happen for Ashlyn. She's going to do amazing things!!

Creating Ashlyn's 1st Myoelectric Arm

This is going to be a longer process than when we went to Shriner's for her mechanical arm. That arm required a harness and it never really fit "right" for her. It was very cumbersome and she got very little use of out it. It was done in 2 appointments. One for the casting...one for delivery. This time, we are making sure it's done so that she will use it by making it fit right and by teaching her to use it correctly.


We are going to Hanger Prosthetics and Orthodics in Independence, MO. Instead of 4 hours each way, it takes 15 minutes each way...in traffic. Super excited!


Day 1 - August 15, 2011

Today she was cast for her new arm. She did everything exactly the way he (Dr. Keith - her Prosthetist) asked. She could not have been better. Once that was complete, we headed to the mall for a quick carousel ride and then we went to lunch at Logan's Steak house. It was a good day for all.

Dr. Keith casting Ashlyn for her 1st Myoelectic Arm

Day 2 - August 17, 2011

Today we just went in to see if the mold fit her correctly. This is one of the most important parts because if the mold doesn't fit her like a glove then the measurements will be off, it won't stay in place when the weight of the prosthetic is added, it just won't work properly for her at all. Unfortunately, the first mold did not meet all of these criteria so adjustments will have to be made. It's okay though, because I know the end result will still be amazing!!

Waiting to see if the mold fits

Day 3 - August 22, 2011

Today we went back to see if the mold would fit correctly. Well, it certainly did. It fit perfectly. Dr. Keith added a weight to it to see if she had any strength or range of motion. Incredibly, she had both. She could move the weight around (it was long like an arm and weighed the same as the prosthetic device will when this is complete). She raised it up and touched his nose with the end of it, which means she has the range of motion as well as muscle control. Yay Ashlyn!

Just like Cinderella's glass slipper, the mold fits perfectly!

The next step will take a little longer as they will work with all the information they have as far as weight, length and range of motion. Now they will begin work on her new arm with everything except the actual electric part. Once we have the next step complete then we work on the electric part and then begin OT so she can learn to use it the way it was designed. :) Did I mention I'm super excited to see how this works for her when it's done. SOOO excited! Then we will get her swim arm done as well. Woo hoo!!

Going back to Hanger Prosthetics

This week is going to be an exiciting one. Ashlyn and I will be going to back to Hanger Prosthetics to have her cast and measured for her new myoelectric arm (with a "cookie crusher") and swim arm. I cannot wait. I'm hopeful that these will be less cumbersome than her current arm with the harness and that she will find them as useful tools in accomplishing everyday tasks. Actually she already does everything she needs to do, but I want her to know these "tools" make make some things easier...as I know it will also make some tasks more difficult until she really learns how to use this.

I am also hopeful that our insurance is going to be covering this at 100% (after my co-pay). I've been told by the insurance company (via email so I have it in writing) that it will be. But, I've also heard numerous other parents complain that insurance doesn't cover it. I know that where there's a will, there's a way (Ashlyn is living proof of that)...I just don't feel like I should have to fight for my daughter to have something that most people are born with. I will, in necessary, don't get me wrong. I just don't think I should HAVE to. We'll see how it goes and I hope that no fighting with the insurance is required. *fingers crossed*

In other news (pun intended)...Ashlyn will be featured in our local newspaper, The Lee's Summit Journal (http://www.lsjournal.com/). We interviewed with the journalist (Mr. Roberts) yesterday and her article should be in the paper this Wednesday. I kind of talked in circles (as I'm not regularly interviewed) but our focus was on Limb Difference awareness, insurance, technology advancements in prosthetics over the years and Ashlyn's new favorite friend, Winter the Dolphin (as the movie will be coming out in just a few short weeks).

Lots of exciting things going on. Hopefully I'll have more news this week on her new arm and when you may be seeing another photo shoot to show them off. :)

A New Opportunity

I'm excited to say that Ashlyn and I will be going to an Upper Limb Clinic at Hanger Prosthetics and Orthotics next week. She is starting to get very excited about the possiblity of getting a pretty new pink princess arm. She fell in love with one that we saw Jordan wearing on Born Just Right. I think she might actually use her arm more often if it weren't for the harness part...which Jordan does not use.

Last year at this time my insurance didn't cover (or barely covered) prosthetics. However, we have recently switched insurance carriers and I have been informed they are now covered at 100% (+ copay). That means that we won't have to travel 4 hours (each way) to St. Louis. Now don't get me wrong I LOVE Shriner's and they were wonderful to work with and we did enjoy our trips there. However, I don't have a lot of vacation time and the hospital isn't open on the weekends. Not to mention that a very active 3 year old (almost 4) in a car for that long makes for an even longer trip.

I think we are both excited and the opportunity to see what they may be able to do for her. They also mentioned a new swim arm. She's swimming like a little fish this year. She has really impressed me with all she can do, including diving under water and picking up dive sticks and returning to the surface. She hasn't figured out how to tread water yet...but it's in the process and I think she'll get there. I do think, however, that a swim arm will help her with the ability to get resistance to move both sides of her body equally. Eh, she would probably figure it out in time on her own, but I want to show her there are "tools" that can help. :)

This clinic will be an opportunity for me to really discuss my wants and her needs. Yes, she can do just about everything with her right hand and little arm, but I just want to try to open even more doors for her and introduce her to these tools bas soon as possible.

So excited!! I'll let you know how it goes!!!

Growing...things....

When I got home from work yesterday my daughter, my mom and I were sitting on the front porch talking about work and the details of the day. My daughter, for some strange reason, has a fascination with breasts. She calls them "boobies"...I haven't a clue who taught her that because it sure wasn't me. *sigh* Anyway, she made several demands to have them right then and there. There was no talking her out of it, changing the subject, giving her something else to think about it. That's what she wanted and she wanted them RIGHT NOW!! Well, after we went inside and the begging continued she went to her closet to look for them. She was certain I was just hiding them from her. Unfortunately for her it just wasn't that simple. My mom says, "I don't know what you are going to do when she starts asking for an arm if she's this upset over boobies." I know that's right.

I let her cry it out a bit and then finally she let me change the subject with a movie and cookie. Good thinking mom! I had no idea what was in store later that evening though.

After bathtime, we discussed painting her nails. She then told me when she got older she would grow another hand and be able to paint both her hands. I told her, in my best happy but serious voice, that was not going to happen, but that she had a helper arm and she could use that. She continued to tell me that I had 2 hands, her grandma had 2 hands and therefore she knew she would also have 2 hands when she got older. (The older part comes from the previous body part desires above.)

Once again I explained that she wouldn't ever "grow" a hand, but that we could put her helper arm on and I thought the nails were already painted the same color she was requesting at the moment. To my GREAT surprise she wanted to wear it and requested to wear it. This is the first time EVER that she has made such a request. As with all things in her life, she'll do almost anything, it just has to be on her terms. So I fetched the arm, we talked about it and she was ready for action. She wore it for about 45 minutes and showed me all the things she could do with it. I was grinning like an idiot the whole time with tear filled eyes because I just saw her grow up AGAIN! God, I love that kid of mine!!

New Arm!

Well, we made the trip back to St. Louis on May 10th. We didn't do a whole lot while we were there. The weather wasn't really cooperative for a trip to the zoo as we had planned. It was quite windy and I don't think it made it over 60 degrees.

We arrived at Shriner's for our appointment and were quickly seen by the S.H.O.P. (Shriner's Hospital Orthodics and Prosthetics). Our first problem was the fact they had made her a right arm...and well...she already has one of those. *smile* That problem was quickly remedied and we got to try on the new arm. It's quite heavy and cumbersome, but she stood there like a champ while they adjusted all the straps. Once everything was adjusted she couldn't wait to take it off. LOL. So, they took it off to make some other adjustments for her petite size. We grabbed a quick breakfast at the hospital and then went back to give it another shot.

After getting the arm back in place and showing her how it worked we headed upstairs for therapy. There were so many toys to play with that we quickly lost her to the world of toys. My mom and I talked to therapist and tried to get Ashlyn to interact with us with the new arm. Nope, wasn't going to happen. Soon enough she pulled her little arm out of the contraption and just let it hang there while she went about playing with all the toys using her little arm instead of her new helper arm. I was told that if she didn't want to wear, not to make her. Don't let it become a battle. Well, I don't know if you've met my girl, but if she doesn't want to do something, no matter how much you try to get her to do it...it's not going to happen. Stubborn little mule just like her mommy I guess.

So it's been a couple of days, and I've tried bribery to get her to wear it. That lasts about 5 minutes per session and then she is screaming and crying for me to take it off. It isn't exactly "comfortable" for her, so I'm going to keep messing with it and encouraging her to see if we can get this to work and show her the benefits it can hold IF she CHOOSES to use it. This, to me, is an OPTION not a REQUIREMENT...so time will tell. She is only 2 after all, and she's a girl, so she has years and years and years of changing her mind ahead of her.

Back to St. Louis - Her new arm is READY!

Okay, so this picture doesn't really represent the subject matter of today's blog, but I like it and that's all that matters. *tee hee*

I received a call from Shriner's today and Ashlyn's new arm is ready. I'm so excited. I don't know why, but when they called my eyes just welled up with tears. I'm excited, but I'm nervous and scared too. I just think it's so amazing what Shriner's can do for children and how lucky Ashlyn and I are to have them as a resource in our lives.

So we are headed back in a couple of weeks. I'm hoping to make a stop by to see a fellow blogger's house to meet her daughter that has the same limb difference as Ashlyn.

I think this is going to be the coolest thing ever...I just hope she feels the same way. Wish us luck!!

Coming Soon: New Arm

Dear maker of the portable DVD player. I love you!! You are a dream come true. How did parents travel with their children prior to this invention? I shudder at the very thought. I owe you much gratitude for your brilliant ideas and wisdom. Will you marry me?

The trip to St. Louis was a very nice trip. Thanks to my mom and the ever wonderful portable DVD player. We headed out in the early afternoon on Sunday. Monsters, Inc. was the in-car movie of choice (she’s only seen this about 1,000 times). I thought she would sleep soundly since we kept her up and hit the road close to her normal nap time. Nope, she stayed awake long enough to watch the entire movie. Once it was over, she was asleep in about 2.2 seconds. We made it to Kingdom City before making our first stop. Legs needed stretching, food, drink and just a break from driving. Ashlyn was sound asleep. Well, as soon as the door closed she was wide awake and ready for some McDonald’s. We all piled out of the car and grabbed a bite to eat and prepared for the next leg of our trip. Panic struck when the DVD player wouldn’t work. I thought it had run out of juice, turns out she had just kicked it and somehow hit it just right and turned the power off. Oh well, we made the last bit of our journey without the help of the DVD player and survived…somehow.

We arrived at out hotel just after 6 p.m. We got to our room and unloaded our belongings. Ashlyn has never stayed in a hotel to my knowledge, but when I asked if she had ever been to a hotel she replied, “Yeah, I stay here all the time,” and very matter-of-factly about it. Little knucklehead. Our room overlooked the pool, which of course is closed because it’s an outdoor pool and it’s still way too cold to be swimming outdoors. After unloading all of our things, we decided to get a trial run in to the hospital so we would know where we were going. Good thing too, because Google Maps gave us the run around. Had we not been there before and knew what the hospital looked like and the surrounding area, who knows where we would have ended up. Alas, we found it and it was going to be a fairly easy commute in the morning we hoped. We then set out to go shopping for a bit, just to get out of the car and wander around. I had hoped we would make it there long before we did so that we could visit the Magic House in Kirkwood, MO which looked like a ton of fun for all of us. It closed at 5:30 though and wasn’t open on Mondays. Just my luck. *sigh* We went to Walmart instead. Woo hoo. Do we know how to live it up or what? Eh, it was still shopping. Pretty much the entire town was closed by the time we got there except for all the stores that we have at home.

After shopping for a bit and buying nothing of any real value, we grabbed dinner and headed back to the hotel. Have you ever stayed at a hotel with a 2 year old? Craziness I tell you. Complete craziness. It was probably from being cooped up in a car for 4+ hours, but she had energy to burn. She ran around the room, opening and closing doors, flushing the toilet 100 times, jumping on the bed, climbing in the chairs…it was as though she’d just been let out of a cage. Crazy girl. Needless to say, when bedtime came along she was just not ready to call it a night. We had a battle of wills, and eventually, I won.

The next morning we arrived at Shriner’s. I can’t say enough good things about this hospital. I wish it were closer to home, but other than that I do not have a single complaint. Our appointment was at 9 a.m. We arrived around 8:45. Ashlyn, upon entering the doors, received a beautiful handmade knitted blanket. She thought that was fantastic. When we got signed in at “The Shop” (this is what they call the prosthetic/orthotic making area of the hospital), she got a beanie baby puppy and promptly swiped one for me too. (No worries, I made sure it was okay before we took 2 puppies home). We were seen by 8:55. She was so incredibly good. She sat there while she was measured, marked, cast and measured some more and didn’t act up at all. I did leave the room at one point to go to the car to get her “baby arm” to return to them if they could re-use it, and she was a little worried while I was gone (my mom stayed with her), but other than that she was good as she could possibly be. She sat very still while all this was going on, making it much easier to get things done I’m sure. Then she got to pick out a fabric for her new arm. After much debate and a few “Uh, no” moments from me, we decided on a very pretty pastel colored butterfly pattern. I’m thinking she’s going to want to wear the arm just for the pretty material. She’s so much like me it’s scary. We were informed that this new arm will be a “functioning” arm. It will come equipped with hinges and all so that she will be able to open and close the arm. I haven’t figured it all out yet, but in 2-3 weeks we’ll be headed back to pick it up and learn all about it. I’m excited. I don’t think she has this all figured out either, so I’m eager to see her reaction and to see if she is excited, indifferent or total against the idea. It’s her call. I just hope she doesn’t discount it too quickly.

I had hoped that we would be able to go to the City Museum after our visit to the hospital, but that too was closed on Mondays. Maybe next time our trip will be during the time some of these things are open. *fingers crossed* We could have gone to the zoo or the botanical gardens, but it was still fairly chilly and pretty windy and I didn’t think we all needed to be out wandering around in that. So, after the hospital we stopped for brunch and then headed home. We took our time getting home because it was early and we had nothing set to do for the rest of the day. We made a few stops and even bought her a couple of shirts (because she’s spoiled that way) and then eventually stopped for ice cream in our home town and got home to sit on the deck and relax. Ahhh…it was good to be home.

She’s just such an amazing little girl. I can’t tell you how proud of her I am. Words just don’t describe it. Newly potty trained and logging 8+ hours in a car in two days and not even have the smallest of an accident. She acted up every now and then, but she’s 2, it’s to be expected. All in all it was a very good trip. It was kind of nice to get away for a little while and having her with us was just wonderful. I really don’t know what I would have done without my mom’s help and the assistance of the portable DVD player. I probably would have just gone with earplugs and driving at warp speed. *smiles*