Somebody is 8....

From Tiny to Mighty!!! Happy 8th birthday, Darsie!

A Little Accommodation can go a Long Way

Darsie will be going into the second grade in September and one of her areas of struggle is organization of her things. So, with a little crafting, I sewed up this pencil pouch JUST for her pencils and erasers. Should help her keep those things close at hand at the very least. At her request, I put in a thumb loop (only one, by her direction, though. Believe me, I asked about two). She is enamored.

Cast is Off!

On Monday, we headed to Shriner's in Portland again for Darsie's cast to get taken off. The cast came off with no problem but there was a "button" on the bottom of her foot that had to be removed that held the sutures from holding the tendon in the correct place (I think!). She was not a happy camper during that.

After her cast was removed, Darsie was very upset about her foot looked (although I could tell the position of her foot was 100% better immediately). I don't think I prepared her enough for the incisions that would be very visible. Anyways, we headed up immediately to the Orthotics office and George, our favorite Orthotist, helped her with her brace that she was casted for while she was in the OR. Her sad little face almost made George cry. But amazingly, once her orthotic was on, she was smiling and happy again.

Back downstairs to see her Orthopedist who thought her foot looked FANTASTIC. And I have to agree. She is walking heel to toe now, although very slow.

I hope to upload a video soon, but I just wanted to let everyone know that her surgery appears to be a huge success. We are looking to start PT soon to keep her range of motion and build strength, but things are going great.

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.