-Brent's birthday was last week. We were rather calm about it. We went to dinner and got ice cream. Nest year is a big year so maybe we will do something more exciting then but this year calm worked.
-I found out yesterday that insurance denied Jilli's Special Tomato chair (click here for the link to the chair I am talking about) for in the house saying it is not covered under plan benefits and from talking to the wheelchair place they have never had the state pay for one. I asked the wheelchair company how much it would cost me to buy one from them and they said around $1,100!!! Dam why are things for people with special needs so expensive? I have been looking online and came find the size she needs for around $400. Now we are trying to figure out our options. Honestly I don't get them not paying for this, because when she has her crashes she is not safe to lay on the couch, she falls off and is going to get hurt, paying for this chair would be cheaper then the ER visit for her falling!
-Yesterday Lydia had her speech eval and she qualifies for speech so they are going to try to schedule that for when Jilli is in PT. Lydia wants to communicate so badly and she is talking more then Jilli did at this age but she is getting very upset communicating which is leading to aggression. Its better to get ahead of things and help her.
-Last week we went to Shriners for leg braces checks for both girls. They said that both of their braces fit fine for now so they didn't get casted for new one. They are lending us a walker for when Jilli has her crashes and needs more stability and if we find it works then we will go through the insurance process (oh joy) for one but I am thankful that they had one to lend us to try. I was also talking with the PT there about Jilli's Smart Drive because it has some issues and she said that she would touch base with the Smart Drive rep to see if they could help us. Sometimes the Smart Drive works great, other days we can not get it to do anything we want it to. I am thankful my brother came with me to Shriners because the drive was long on the way home with traffic so it was nice to have a second adult.
-We did get Jilli's PT upped to twice a week for 6 weeks. With her PT having been out a few months ago we had some extra visits and after a ton of hoops and craziness we got it fixed. It is really helping her.
-Yesterday after speech/PT we headed to RMH. We had several friends that were staying there yesterday so we went to visit people. The zoo came in and did a play about the earth and animals. It was really cute and Jilli and her two friends got to be polar bears. It was fun to spend time with friends.
-Lydia also decided to take care of her lip tie while at RMH. She fell and her face and the floor met. It was really bloody but she handled it well. Hopefully she took care of the entire lip tie because then the dentist will not have to cut it.
- We are working on getting the house ready for holidays. We spent part of the weekend moving things around in the living room. Where to put the tree needs more thought this year with a very active toddler and Jilli wishes the tree was already up but soon we will get to that. Brent's family celebrates Thanksgiving here so we are busy getting the house ready for that and then we will decorate for Christmas. I use to be a no tree until Thanksgiving person but at this point, I am flexible, if it makes Jilli happy to put up the tree sooner then it is really no big deal.
-We are working with our med supply company to get an adapter that we need for the g port of Lydia's tube for a new med that GI is talking about trying but apparently I am the first person to ask for this and it is expensive.
- I got a script in the mail last night for Jilli to have the urine test that she had done in the hospital again. I have read a bunch about it and I get why a baseline is good but it doesn't rule this issue out if at baseline the numbers is fine because how what they are looking for works is it causes evlivated numbers during a crash. We will see.
- School is going well for Jilli. We worked on rhyming this morning. She likes school. We do it first thing in the morning when she gets up.
-Miss Lydia is definitely a toddler! She is into everything and loves to see what things do. She is currently shredding a wipe. She lives to explore everything.
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