Dylann 5 days old

Dylann 5 days old

Friday, March 11, 2016

Philly trip #5

It's been a busy last few weeks! Dylann returned back to daycare 2/29 and has enjoyed being around other kids! She had a rough few drop offs but seems to have acclimated well to the new routine. She has started to sit on the potty there, naps on a cot just fine, and talks about a new boyfriend each day :).

That same week however her demeanor started changing. She would wake up crying at night every 1/2 to an hour and she screamed whenever you would move her left leg( the one with the hip that had surgery). That went on Tuesday - Thursday and I was worried her hip was out. Her knee was swollen and it was hard to tell where it was hurting cause she'd point at her whole leg and sometimes to both legs. Friday morning we went and got a X-ray then emailed it off to Philly. Then we went to see the amazing Angel!  She spent an hour with Dylann and she was a totally different person! Dylann was letting her touch her leg and everything. She could tell around the knee was having a lot of inflammation. It's crazy how amazing Dylann does after we see her!!

About 6pm that night we heard back from Dr VanBosse in Philly. He said the good news is her hip looked great! phew!!! The bad news is she had a fracture in her femur just above her left knee.  He said that can be common for kids with AMC after having been casted for 4 months then trying to move around so much. He said to try to avoid a cast to put her in her KAFOs (tall full leg braces) and lock the knee straight. Luckily we were already scheduled to come see him in a few weeks so was a good plan although Dylann HATES the tall braces. It was a bit of a fight but we managed to keep them on. The rest of the week or so after that was pretty uneventful.

We got to Philly this Tuesday. All 4 of us came since it was Micah's Spring break. Wednesday Dylann had physical therapy which went ok. She stood for awhile with a wedge on her shoe and has improved a lot on bringing her leg back in from how it was casted out to the side. We spent the rest of the afternoon wandering around downtown Philly since Jeremy and Micah had never been and it was 80 out!! 

Yesterday Dylann had more PT and it didn't go as well. She said she wanted to walk the whole drive over but then screamed and cried once all the tools came out. So that was short lived.
 During the afternoon we met some new friends, Hope and Kristy from CA. Hope is 3 and running around! It's so wonderful to see kids with AMC as they are older and the capabilities! Kristy and I were talking about how invaluable it is to meet other families and the amazing support!
We also went and played at a park since it was another beautiful day out!


Today is our last day in clinic at the hospital. She was anti therapy today. She wouldn't even stand up and screamed so we stopped after a half hour then had to do an X-ray which is not her favorite thing. The MD schedule was light today it seemed! We got right in at our scheduled time which I don't think has ever happened! Of course Dylann fell asleep 5 minutes before that!  

The MD appointment  went great!! Her fracture is healed! Her hips look great! Despite her screams, he got her to stand on her own!!! She needed a one inch wedge on her right shoe to account for her bent knee but then she did it....reluctantly! So we got the ok to wait three months before we return! Was hoping a little longer but that'll work!

So back to the RMDH we go to get packed up and ready to head home tomorrow.  Got a busy few weeks with another cooking night at the MPLS RMDH, Micah's birthday, then Easter.  Thanks to everyone for the kind messages and thoughts this week! We appreciate all the support!