New Accessories!

Ok, so the heading is a little misleading. ..At least the exclamation point is. It implies that I'm excited or that it's good news, which I guess it IS technically good news.. .I'm just not excited and neither is Addie.

I've decided to try to do a better job of documenting our new "stuff" (i.e. treatments, therapies, attachments) from day one and on. I've done that some with her patching (which she is currently rocking, I might add!), but I feel like I haven't with so many other things, particularly with the things that we picked up in the hospital - her Gtube and tube feedings - and shortly thereafter. I have picked up a bit of wisdom through our various experiences, and one of those tidbits is that things always start out seeming impossible, like a giant mountain peak, and intimidating. The great thing with tackling so many challenges is that I now know that those once daunting things become "just another thing" with time. They aren't as bad as they seem at first, and we quickly become adept at integrating them into our lives. That is not to say that there still aren't days when I resent her Gtube or want to give up on keeping a patch on for 6 more hours (6?! Surely we're down to 2-3 hours at this point in the day. ..oh. ..it IS 6 more hours. Dang.) or want to throw her hearing aids out the window. . .but it's not as emotionally upsetting as I thought all of those things would be and most days are really good. We just do what we can do with all of them and sometimes that means you cut patching 30 minutes short or you don't make her wear her aids for a few days (ok. ..weeks during 4th quarter between juggling her, Christmas prep and work), and I have learned, that is OK. I know she needs all of them all of the time, but sometimes that's just not feasible. We are consistent, and 13 days out of 14, we do all of the required things right all of the time. ..it's just that 1 day. .. that allows me to keep my sanity.

So, the purpose of documenting from start to finish (someday, maybe!) some of her "stuff" is to serve as an encouragement to other parents facing new, special challenges and also for me when we face something else, as invariably, we will. This will be proof that you CAN do it. You HAVE to do it, so you may as well start with Day 1 and move forward. Cry, curse, laugh and grumble. ..you need to! You're human and let's be honest, this just isn't fair to you or your sweet kiddo. Unfortunately, if I have learned anything, life just isn't fair. This is, however, your reality, so you need to accept it so you can help the rest of the world accept it.

I may go back and revisit some of our earlier accessories from memory, but for now, I wanted to document the start of our journey with AFO's, or Ankle-Foot-Orthotics for those of us not "in the know". ( I am now, officially, "in the know". ) In this case, the orthotist came out to our house with the custom AFO's they constructed for Addie. Not all AFO's are truly custom, but for this go around for us, they are. I'm not going to lie. I've been dreading this for a couple of months. Not crying myself to sleep at night dreading because I know we'll adapt, but more like "ugh, it's something else we all have to adjust to, more work to do, and most of all, something else for Addie to overcome (see my "It's just not fair" comment above)". It took over an hour to get them "just right" and to allow me some time trying to get her strapped into them. They don't look as scary as I had anticipated, but it is a bit of a challenge to get her into them just the right way so that the hard plastic doesn't put too much pressure on any one place, leading to skin breakdown. No surprise, she is NOT a fan, and at one point she was crying, and it was all I could do not to join her. I'm sure I will before this is over, and that's ok. Our life isn't easy all the time, but it is definitely blessed and the challenges just emphasize the blessings. I actually mean that and am not just saying it because I'm supposed to. ..the challenges just make me that much more grateful for what we DO have. We were afraid she may not be able to walk independently a year ago. ..now we know she can, and these braces will help prevent future joint problems as she learns to walk and run. If she weren't walking, she wouldn't need braces. So, I'm thankful we are in a position to need braces. :)

To be clear, she doesn't need the braces in order to stand or walk. She is strong enough and coordinated enough to do that without the aid of braces (HUGE deal), but she needs the braces to help realign the bones and joints in her legs right now. In the long run, the braces are going to help create an arch for her to help keep her from overpronating to the point of walking on her ankles, they are going to help keep her toes from curling and from crowding onto one another which could have ultimately led to callouses and bone spurs, and they are going to help straighten her tibias (the larger of the two bones in our calves) so that she doesn't have ongoing knee and hip issues.

For the short term, they are going to present new challenges for our little cruiser / crawler. The biggest issue isn't so much the brace itself, which will make her legs / joints sore, but the gigantic shoes she has to wear to accommodate the braces. The orthotist brought special shoes made to accommodate the bulk of orthotics for her to wear, which thankfully insurance covered, and they are HUGE!! Not only are they huge. ..they're HEAVY! So, while the braces may make her legs and feet sore, the shoes present in-the-moment complications and have stolen some of her newly discovered independence. Watching her, it reminds me of when I was much younger and would wear my roller skates around my mom and dad's house. The added weight and height of the roller skates made everything much more awkward - trying to sit down, crawl on the floor (after a fall), stand up, and even untangling my feet (also after a fall) always presented interesting challenges. The difference is, I would do this for a few minutes once every few months or so. ..Addie has to do it all day, every day from now on. For her, she can't transition from a sit to a crawl, from crawl to a sit, or from any position to a stand now, and she needs extra supervision when cruising since she tends to trip over her extra large shoes. She will get stronger, adapt and regain that independence, but for now, it's especially trying for everyone involved. I'm sure we'll figure out the best socks, pants and shoes to accommodate the orthotics without adding so much bulk, but for the first day at least, the shoes were a shock to both me and Addie! I will let you all know what I figure out over the next few weeks. It should be interesting!

Current shoes (size 4.5) v. Orthotic shoes (size 6.5)

What have I learned so far:

• These particular AFO's should fit her for roughly a year (or through 5 pounds of weight gain, whichever comes first).
• I'm on the look out for "bright red places" where the plastic or velcro puts pressure on her skin that do not fade within 30 minutes of taking the braces off. Those places will be prone to breakdown if we don't adjust the braces. Needless to say, we are watching those ankles and shins like a hawk.
• There is a schedule for breaking in the braces. We increase wear time by 30 minutes each day, starting with 30 minutes earlier today. We will increase up to 8 hours. 
• To get the braces tight enough, I have to bend her knees at a 90 degree angle to make sure the heel stays in the very back of the brace and then get the braces tighter than I think they should be, and then make them just a bit tighter. This is our least favorite part of the process. Addie sobs while I struggle to do 5 things simultaneously while also trying to calm her down and try not to cry myself. Having Philip home during the ice storm and for the weekend is a huge help for both of us; he's great moral support and wonderful at distracting Addie while I'm mashing and contorting her feet and ankles.
• The shoes that came with her braces weigh at least half a pound. No kidding.
• Finding the right shoes that will accommodate the ankle joint of her braces is quite the challenge. I have two pairs now that I think may work, but we'll have to try them another day or so to find out for sure which one is the keeper.
• It's hard to do anything else while she's in the braces right now. It will get better, but for now, she demands full attention during brace time.

My coffee mug (for size reference), Addie's braces, orthotic shoes, and her old shoes.

The bright red marks we're on the look out for. This one amazingly faded in 30 minutes.

Worn out after her first 30 minutes of bracing.

A pictorial view of our current attachments. Shoes, braces, patch, aids, and a tube that we use to do her tube feeds with. Thank goodness for insurance!

For now, this is a new hurdle. We'll adjust, adapt and climb over this challenge just like all of the others. The patch is just a part of our day, and we don't think twice about it. The aids are more of a challenge, but we are making progress. The braces will be the same way after a few weeks or months. It's so comforting at this point to understand that our new normal can continue to shift with whatever life sends our way. 

I will close with a wonderful story of how Addie copes. She is incredibly strong and resilient, and she is already doing her best to roll with this punch. No sooner did the orthotist have her right brace and shoe on than she was trying to get up and walk, dragging the leg, brace, shoe and all, behind her. She went from angry and sobbing to "Get out of my way; I got this" in 3 seconds flat. That is the best example I can think to show what spirit beats within the heart of this beautiful 21 pound angel of ours.. .try to slow her down, and she will just drag you along behind her. How can you not be so in love with our girl when she has that kind of strength of spirit?! 

Crawling around, Day 2.

This is not the face of a happy camper. "Sheesh, mom.. you have got to be kidding me with these things. .."

Cruising a bit, Day 3.

Love the New Balance shoes we got at Shoe Carnival!!! 

They look much more size / weight appropriate.