Monday, April 9, 2012

Busy Month!

Miss Kinley's had a very busy month! We finally got her new leg braces and they are as cute as I thought they would be! We even found adorable leopard shoes to match and for a full week she totally rocked the look. Unfortunately they gave her really terrible blisters on her right heel and the little bone that sticks out the side of her foot. Once her PT saw, she confirmed that there was a real issue. We took the braces back and had them add a couple pads to help correct the issue. For two weeks now we've been out of her braces...which totally stinks. I think I had a lot of hope that these braces would give her the push she needed to start walking unassisted. So far all they've done is left us blistered and discouraged. I am just not sure that these braces are going to live up to my expectations. Maybe I will be surprised once she is back in them, now that they are fixed. I also think she has a hard time because they are so big that her shoes are now 2 sizes too big so that also takes time to get used to. But when she walked, she was using her hips to help her, which she shouldn't do. So all in all, a bit of a bust in this mom's opinion.

In even sadder PT news, Kinley's wonderful physical therapist will be heading off on maternity leave. We thought we had another few weeks with her, but they know how important it is to keep our time slots and they have 2 openings for us with new therapists. I have spoken to both so I know it will be ok, but Jennifer has been with us since the beginning and it kills me to lose her-even if it is only for a little while. She has worked so hard to make sure Kinley is progressing as much as possible and now she will (most likely) miss Kinley taking off on her own. And Kinley's birthday. This is really hard for me because last year we made a pact that Kinley would walk (assisted or unassisted) into her 2nd birthday party. I think we all know that will happen because she walks great with assistance, but I really wanted her to be a part of it. I feel like she has earned the right to be the one that's there with us when she finally makes the leap to walking unassisted.

We are stilling chugging right along with lefty! She continues to amaze me with how often she remembers that lefty is there! One of the biggest comments that the older hemi kids tell us is that they simply don't remember that their weak hand is there. Every time she eats she asks for lefty to be wiped clean. She uses lefty to play with her toys. Puts bracelets on lefty. And she calls it by name :) People always think its so funny that she calls her hand lefty but it really was a great way to get her to interact with it. People that have been seeing her once a month or so along the way are suddenly amazed when she reaches up and gives a high five and fist bump with lefty! We are now working on getting lefty to open on demand and we are making progress. I think its important that she starts to become aware of her clenching and try to fix it as much as possible. We still wear her soft brace during the day to keep her thumb out and then he hard brace at night to keep all her fingers flat and its definitely working. She hasn't gotten stiff or hooked!

Now its time for frustrated mom to come out. The cup. Ohhhh the cup. I think the cup is THE most frustrating thing we have faced so far. We have tried every sippy cup there is. No luck. We taught her to blow in a straw. Now its a toy. We gave her fast flow nipples to get her used to more liquid in her mouth. We took them away because we want her to work her mouth muscles more. We bought a cup that you squeeze the drink up a straw into her mouth. She cokes or lets it all dribble out of her mouth. Now they keep telling me that open cup is the way to go. But I am actually not on board with the therapists for once. Can you just imagine a 2 year old that has use of only one hand having an open cup as the only method of drinking. Its just not going to work. That would mean that any time she wanted to drink anything someone would have to help. And thats just not practical. I keep telling myself that the most important thing is that she is getting liquids from her bottle and that is something that, in the days following her surgery, we weren't even sure she would be able to do. As my mom said, sometimes its easy for all of us to forget what shes been through because she's made so much progress and seems so normal. But shes not normal and if she has to be on a bottle until she is able to learn another way, then thats fine. These days its rare for her to even put a cup up to her mouth and when i stop to think why that is, its not hard to come up with the answer. For months we have offered her a cup and for months she has been unable to get anything to come out. You think I am frustrated - imagine how she must feel.

And for the even more whiney news...poor k is still biting her tongue. In fact, she is screaming as I type from having bit it again. Its been 5 months now of drool and biting and blood and screaming every...single...night. Her tongue has the biggest sores. I know how bad it hurts to bite your tongue, but to bite it over and over on the same tender place and every time you try to fall asleep you are jolted awake again with another surge of just kills me. And again. Sighs...sighs from mom.

On to more cheery news :) We have also been having a lot of fun! Every Saturday you can find us at Gymboree and she LOVES it! Our class went from just Kinley to now having 5 regulars which is just fantastic! She loves to interact with the other kids and chase them around. And I think she is a natural with the little bell set that you play with a mallet.

We also took Kinley to Galveston and actually made it away from the bay house to the beach...and she HATED it :) She hated the sand, hated the water. All she actually enjoyed was the Wendy's french fries we had on the way back to the bay house. Once we were back she played with a crab and went up and down and up and down the stairs. Mom was sore the next day! We also enjoyed a trip to Chappell Hill to see the bluebonnets. Dad even surprised us and ask his photographer friend to come with us to take some family pics. It was a lot of fun...even if I tend to get a bit crazy when we have out pictures taken! Easter was also a lot of fun! We got to see her cousins and hunt eggs. She loves to spend time with her family and is always giving out hugs and pats. Such a sweet girl!

And finally and most importantly, its time for the annual Hemi Foundation fun run and once again you can sleep in and be a virtual running required!! The deadline to sign up and get the free tshirt is the 14th of April, so you have to act fast. We really owe the hemi foundation so much that we love to use this as a way to pay them back! $30 is the cost to register and the website is - Team Kinley. We are actually signing up to attend the race, which takes place near Dallas! This will be our first hemi event and we are really looking forward to meeting some of the kiddos!

That's all for now. One day I will find the time to update this page more than once a month!

p.s. She just bit her tongue again. Blah.