Recovery

After getting the results from the motion lab analysis, D's ortho at Shriners, Portland, thought it would be best to perform an anterior tibialis tendon transfer, a posterior tibialis tendon lengthening, and an achilles tendon lengthening. There was some talk about doing a femur osteotomy as she has some leg rotation originating from her femur but as it is a much more intensive surgery, we decided to hold off on that one for another year or so, if she will even need it.

On Tuesday, D was admitted at Shriners for the tendon surgeries. The surgery lasted about two hours and her ortho said that she got really great correction when she released the anterior tibialis. D spent a night at Shriners and we were able to bring her home on Thursday (it was a pretty grueling three hour drive for her, but she did really well). She is in a short cast to her knee for the next month and a knee/leg brace over that for the next few days.

Recovery so far has been ok. We are still keeping up on the regular schedule with her pain medication and she is apprehensive of too much movement but she is starting to sit up in her wheel chair for longer periods of time and wanting to do things. Lying on the couch watching tv is getting old, I think! I'm hoping she will start transitioning to using her walker around the house soon, but we have to get her over the anxiety of pain issue first.

Shriner's Visit #2

Yesterday, we trekked down to Portland with Darsie for her second visit with the fantastic staff at Shriners Hospital, Portland.

Our first stop was with George, the orthotist that Darsie picked during our last visit from a photo on the wall. He is simply awesome with her. He made many, many adjustments (including an entirely new strap system) to her new AFO to make sure that it was the proper fit and comfortable to her, too. Turns out, he wears DAFOs, so he is well-versed in anything orthotic related.

Her second appointment was in the Motion Analysis Lab with Rosemarie and Bob. They performed all sorts of walking exercises with videos, sensors, and electrodes. At one point, Darsie probably had 50 sensors and electrodes all over her body all wired into a backpack that was then hardwired to a computer. She was given a comprehensive strength and range of motion analysis. Also, a pressure analysis of her gait as well as photos of her standing from all sides and even from underneath!

After a short break, we went and saw a speech therapist for an eval. No speech therapy recommend! So, that was awesome.She gave us some things to work on, but she was very impressed with Darsie.

After that, we had a group meeting with two physical therapists and two occupational therapist. Lots of exercises and walking and climbing ensued. I was most impressed with Darsie figuring out how to bead with her right hand but more so, that she could pick up tiny plastic beads and drop them into a vanilla bottle with her right hand. She is awesome!

Now we wait for the professionals to look at the huge amounts of data and information that was collected and meet to form an action plan for D.

I continue to be so very impressed with Shriners Hospital, Portland. First and foremost is that their doctors, therapists, and staff TRULY care about helping children and are passionate and kind and loving. Also, the process is so fluid at Shriner's. Professionals meet with other professionals and together they formulate plans and theories and ideas. Normally care is so disjointed because different organizations are in charge of different aspects of care. I have the utmost confidence in Shriners.

6 Month Update

Wow, six months since my last post? Just a little ridiculous, huh?

Darsie has been up to so much since then, but mainly starting first grade! It has definitely had its trials and tribulations but I think we are finally in a good spot and progressing well. Her last report card had ups and downs but the main items were that she is reading and doing math AT grade level. So, BIG CELEBRATION!

We recently had a consultation at Shriner's in Portland. Just as we thought, it was recommended that Darsie have surgery on her foot. Botox isn't really doing enough for her at this point and we want to get her foot corrected before more permanent damage is done. She was also casted for a new AFO. She has a hinged DAFO but the Orthopedist at Shriner's thinks she needs more support that an AFO will offer. We go back in February for a day-long appointment with their Motion Lab, Orthotics, Speech, Physical Therapy, and Occupational Therapy Departments. Whew! It makes me tired to even type that out!

We have recently started the process in matching Darsie with a service dog through CCI.org. We think she would benefit greatly from it, especially after talking to lots of other Hemi parents. We had to submit basically an application request application in order to complete a full application. Earlier this week, we received that full application so we are putting it all together to move forward further in the process!

We were hit pretty hard with an epic historical storm this week. Darsie loved the snow and sledding. She is quite the daredevil.

The Cohesion Project

Take a look at this video and please think about donating to make it a reality. It is time that the world realizes that cerebral palsy isn't the end of a life. I know so many people with different levels of cerebral palsy, all who are wonderful and worth taking the time to get to know. It's time to encourage people to look beyond the labels.

IEP Time

The girls are sporting new hair these days, but this is a somewhat recent photo.

Yesterday I met with the therapists and principal at Darsie's school and had her annual IEP meeting. According to them and their testing, she is doing so, so well. She is hopping on her left foot very well and is starting to hop on her right as well. She is walking with alternating feet up a lot of stairs. Her writing has improved. And she can do 1" buttons! Things to work on for the summer are writing, buttons, and zippers. We can do that! Jeff and I have definitely noticed an increased use of her right hand as well.

Looking into the next year and what modifications she will need are perhaps modifications in PE as well as extra time to finish written assignments as she is a slow writer.

I love my girl and she is such a joy. She strives so much to be independent and successful at whatever she chooses.

Proud Mama

I know I'm about a gazillion years late on tons of things but I just wanted to check in and update everyone on Darsie's latest round of Botox and serial casting. It has been very successful, which is sooooo good.

Things are progressing in the school department. For Mother's Day, the class put together a cook book of their moms' best dish. They dictated their recipe to a classroom helper and they were compiled into a book that was sent home.

Here was Darsie's:

Chinese Food
By Darsie

Chicken
Sauce
Oil
Spices
Rice
Egg Rolls

My mom makes the best Chinese food. First, she puts the chicken in the pot and then she pours the sauce on it. Oil and spicy stuff go in. She cooks it until dinnertime. Then she cooks the rice in a boiling pot. And that cook until its dinnertime. And then puts the egg rolls on and cooks them and then we eat!

I was soooo incredibly proud of her because, and honestly I know I'm biased but I truly believe this, it was the most thorough and well organized recipe out of the bunch. And she didn't choose macaroni and cheese (which we do eat plenty of).