Brown and Pink Polka Dots : change

This morning is a reminder of all the news we have been through. When we brought Jilli home with an NG tube, when she got the NJ tube and was on 24 hr a day feeds, when she got her GJ tube, when we switched to a button, when she started on oxygen, and now when she got leg braces. Each of these changes has felt overwhelming that first morning home afterwards but slowly they become our normal.

Yesterday we picked up Jillian's leg braces at Shriner's Hospital in Chicago. They have an in house braces company named POPs so we went to POPs first. They had the braces and they tired them on Jilli and then marked where her foot sat in them and then took them to the back room and shaved them down to the perfect size. Once they are the right size they add the straps. Once we were done in POPs they sent us back to the main waiting room to wait to see the dr. The dr said everything looked great with the fit of the braces and we have a follow up appointment in 6mo. We were at the hospital for over 3 hours.

Then the challange came... to find shoes to fit over the braces. Jilli has had othrodics for a long time now so I am use to not being able to buy shoes for her at most places but this was a new level of interesting. I had read all I could online about shoes for braces before we went down. Jilli was determined that she wanted shoes from Target (they sell Peppa Pig shoes there) so we went to the closes Target... Jilli had TINY feet. She still wears an infant size 5 for length however now her feet with braces are closer to the width of an 8. We couldn't find any shoes at Target we could make work. We then went to Woodfield mall. First stop, Stride Rite. We found a pair that fit ok and she kind of liked them and since I was a little worried about finding anything else we picked them up. We looked around a couple of stores and then wondered into Crocs. I knew from reading online that many kiddos with braces wear Crocs because they are really wide. Jilli has always wanted Crocs but because of her orthodics they were not an option plus she has really narrow feet. At Crocs she fits into a 4/5 so the length is right and they are wide enough the braces go in! Score! Plus the only pair of Crocs they had in a 4/5 just happened to be princesses! She was so happy!

Thursday night was also the first night Santa came to the mall! To celebrate they had a marching band parade around the mall... my sweet sensory girl just covered her ears and cried. I felt so bad for her I wanted to cry too! We went into JC Penny to escape the noise and found they had Tsum Tsums on sale and she has been searching for Dale (as in Chip and Dale) and they had one. She was so excited. Those little plush things make her light up! She now has Chip and Dale and she is so excited that the brothers are united!

We then headed over to Ikea and got dinner (I'll blog about that later) and picked up light bulbs for our kitchen (It was probably the smallest Ikea trip we have ever had) and then we headed back home. It was late by the time we got home and the girls headed to bed.

Yesterday Brent had to go to the DMV to get a new drivers license and he took the paperwork with him for Jillian's disabled parking permit. Brent and I really struggled with this. Jilli qualifies multiple ways and more then one of the people on her medical team have talked to us about it before but we try to use as little services as possible because we want to make sure others are being helped too, but after some long talks with some friends we decided it was time to listen to the dr and get it. Jilli's lungs do not handle Wisconsin winter well and the closer we can park to the doors the better. We also have a lot of stuff that has to go with us everywhere and extra room to get it all out would be really helpful in tight parking lots. We are not going to use it all the time (we didn't use it yesterday) but we have it now for days when we need it.

Yesterday we also voted. Jilli loves going with us to vote. Its one of the things I remember doing with my parents when we were little and probably why I find it important to go vote so we are hoping to instill that in Jillian.