This summer was rough on Jillian's ankles and in meeting with PT and genetics it was decided that it was time to brace her ankles. We had put it off as long as we could but it hit the point where she was getting hurt too much.
Mom, Jilli, Lydia and myself drove down. Thankfully the hospital is not in downtown but rather out by O'Hare. We got there and checked in. They sent us over to registration where we checked in and they took Jillian's picture. Then they took us back for a height and weight and then to a room. It was a little interesting because the part to attach Lydia's car seat to the stroller got left in my car so we had to carry Lydia's seat and push Jilli (this is why we have not ordered a wheelchair yet for Jilli).
We got into a room and the nurse and PA came in to talk about Jillian's history. Thankfully I printed a lot of things out from Jillian's mychart and a her most recent progress note from PT with her bracing recommendations. Going over Jillian's history is long. The PA left and the nurse and I went over all of her meds. Jilli was busy playing with the new Barbie doll they gave her.
Then a social worker came in and asked about what programs we are using and different things. Then the doctor came in (the cool part was the social worker stayed in while the doctor was in) and we talked. He watched Jilli walk. Her walk was not too bad that day and he said if he didn't know her history and have the recommendations from her PT he might just go with an smo but he decided that it would be best to do both smo (goes just above the ankle) and hinged afo (goes part way up her calf). The pair of smo will be for day to day use and the afo pair will be for PT, museums, parks, ect. when she has to do more walking and needs more support. Once the dr left the room the social worker asked if I was good with the plan and explained how the process was going to work.
Shiner's has an in house company that makes leg braces. They moved us to a different room where we gave the brace people our insurance info and then they moved us to a third room where the casting took place. First they put a long tube sock on. Then they put a silicone piece in so they could get the casting off at the end and not cut Jilli. Next the wrapped her leg in the casting material. Jilli sat on my lap during the casting process. She got nervous a few times but sat still. While we sat and waited for the casting to dry Jilli got to look through a book of patterns for her braces. For her smo she chose one the is pink with glittery stars and barbies. For her afo she chose pink hearts. She was so excited with the patterns! The casting process took less then a half hour and then we were on our way.
We have an appointment the first week on November to go pick up her leg braces! She is excited because we told her we would take her shoe shopping after we pick them up!
On the way home we stopped at the fashion outlets. Its been on our wish list of someplace to stop for a while! They have a Janie and Jack outlet! They also have a Disney store where we found Lydia a Halloween costume and we found Jillian shoes to go with her costume that work with her orthodics! She has such tiny feel! She still fits in a 12-18mo shoe! Jilli was excited because they had a Little Mermaid Tsum Tsum purse and that is three things put together that Jillian loves!
We then headed home and got caught in a hail storm that stopped the interstate. We got to my parents and then loaded the girls up in my car. The girls and I headed home and hit the storm a second time so we ended up waiting it out in the Target parking lot. I was so grateful once we finally got home!
Our experience at Shiners was great and I highly recommend them!
Today we are taking a low key day. I'm trying to get things done that didn't happen last week. Bedding is in the wash right now because Lydia peed on her bed. I called and took care of our referral to the special needs clinic at Children's. Some friends of ours just had their first appointment there and said it was such a huge help and we should check them out. I had heard of the clinic before, infact the ER doctor with Jilli a few weeks ago asked us why we were not in that clinic, but until this other family gave me the details I didn't know really what it was and why we would benefit from it. They said we should hear back sometime in the next two weeks if we are being accepted into their program. There is a list of things that you have to have to meet the criteria for them to take your case, but from my phone call today it sounded like we would most likely be accepted. The clinic helps with care coordination and family support. Its always interesting when you talk to a clinic who only works with complex kids and their comment is "wow, your children sound very complex..."
Today I am also back to my battles with VNA. First our GI nurse contacted me and said VNA cant get the new drainage bags for us and I would just buy them myself but they are way overpriced. Now I need to figure that out. Then Jilli was playing with one of her toys on the front window (its this cool suction cup building toy) and all the sudden said that oxygen guy was here. I thought she was pretending until I looked outside and saw the VNA truck. Oxygen is suppose to come on Wednesdays after 1pm. We changed it to that because they were doing crazy things (like delivering it on the wrong day and not letting anyone know they delivered oxygen and us just happening to find it at 8pm having no idea how long it was sitting there) so we moved it to Wednesday since Brent works from home on Wednesday we figured then both of us would be here and then hopefully there would be less issues. Last Wednesday it came at 12:30 which I just shrugged off but today it came on Tuesday... 24hr too early! I called... they don't know what happened... surprise surprise! They never know why things are messed up. Its just annoying! Its not like we are having a toy delivered... this is oxygen! On top of it today our house is a disaster still. The kitchen is clean but you can't see that from the entry way... no what you can see from the entry way is the pile of dirty clothes with my bras on top and our living room which looks less like a living room and more like a kids toy land. I was also still in my pajamas since we are having a lazy day at home. Dealing with VNA is a job in itself and I would jump ship and move companies but from talking to other families, they are all like this... sadly this is normal for the medical supply industry. I just feel bad for the people who do not have the capacity to keep on top of them like I do.
I also looked at our EOBs today and Children's has not billed our insurance for botox yet so I have not had to battle them about that yet which is nice. I keep hoping that all will just take care of itself. Am I that lucky?!
Also the week we went to Shiner's Brent's grandpa was in town. It was really nice to get to spend time with him. We always enjoy seeing him. He got to met Lydia for the first time and she just grinned at him!
Jilli is having fun playing today. Lydia is napping on me. I was hopeful that since she slept in the crib for some naps at the hospital that would transition to sleeping someplace other then me when we got home but it has not... I try to remind myself that they are only little for so long and laundry will always be there, she will not always be this size and want to sleep on my chest.
Tomorrow we have MOPs and I have to get a recall taken care of on my van (my little bro is helping because I can't go to car dealerships due to their love of having balloons all over the place). Thursday we are back up at Children's for Jillian's Pulmonology appointment. Today I am just thankful for a day with nothing planned!
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| Putting the funny sock on |
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| Waiting for the casting to dry on the second leg |
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| Pumpkin farm! |
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| Jilli said she wanted an odd pumpkin so this is what she picked out! |
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| Working on tummy time is harder with a GJ tube but we give it our best! |
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| She is too cute! I love those shoes from Gymboree! If you have a baby go get some, they rock (this is from a person who use to sell Robeez for a living...) |
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| We went to the zoo with Jaime an Emerson! |
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