Philly trip #7

Just wrapping up the day after seeing our MD. We had the early appointments which was nice so we actually got out of there at 230 today.  

Got her new braces at 830, then X-ray, then waited for her appointment until about 11. Played a little tea party while we waited.

She got a new "buddy" from the X-ray tech.

She got some new pink braces! She must have really liked pink in June when we ordered these 😜.

The appointment was hard. Dylanns got more work to do. 😞  Her feet are still regressing but not too fast. He's hoping to keep the next casts until a year from now.  Her knees are the same, same plan. In a year she'll have her knee surgery where he will stop the growth plates so it can straighten out, then remove them. Her hip was disappointing. It is in and it is growing and progressing...but, the socket is not shaped like it should be by now to keep it in. He wants to do another surgery in a year to curve the socket then into a 6 week Petrie cast like below.😬. He's going to think more about timing but potentially it could mean an all day surgery of hip, both knees, and femur plate removal or splitting these into two so this cast x2- once for hip and once for knees. 

I'm at the point I might just move out here.  He's talking more stuff he wants to do after "a few years down the line." I was hoping we'd graduate when she was 5 😂. Not so much.

Anyways, just trying to digest it all. Dylanns exhausted and passed out at 739...so I'm going to read a bit.. The new Jodi Picoult book is out !! 😍 

Think of and pray for this little one.

 

October updates

Hey all!

Not too much to update this month so far. We do go back to Philly in three weeks so I'll update more progress then.

We've been working hard to get Dylann walking in her walker more then also being able to get up in her tall braces. She starts preschool on 11/15 so we want her to be as independent as possible. Can you believe she's three in a month!?! A preschooler, wow!  We get to see her room Friday to prepare.

I also decided 6 months ago to see if we could get more services and help through the county. I had been avoiding it for a few reasons: 1) I kept being told she wasn't "disabled enough" by other moms, 2) it's a lot of work and energy that I wasn't sure I had in me to end up getting denied, and 3) there's something that feels final about getting a determination that states you are certified disabled that I wasn't sure I wanted to do.  Our pediatrician encouraged us to do it in March. He said he was surprised I hadn't thought about it sooner and that he'd like to see us get some help. Lol I must have looked defeated or tires that day :)!  Well after 6 months of paperwork and advocating and paperwork and waiting and paperwork, the MN state medical review board did determine she met their guidelines for disability.

So, will see what else we can get to help Miss Dylann keep progressing and keep being awesome!

I'll post more after Philly!