Speech: Jillian has been doing speech at New Berlin Therapies for over a year now and has come a LOOONNNGGG way! From my 18mo old who had NO words, to my now 2 1/2 year old who has many words, she has worked SO hard in speech and we are so proud of her! It was time to redo testing and Jillian's comprehension score wowed us all at the 75th percentile! Her expressive score was lower but the two of them averaged out at a great place! She still struggles getting words out, especially if tired or being asked a question she has to answer with words rather then actions (she will frequently just repeat the last two words of your question) but she is doing amazing! So amazing in fact that she is dropping to speech every other week and then we will see from there. I am SO proud of her and so thankful for her therapist's hard work!
PT: Today Jilli had the best PT session she had in a while, thankfully because the last few have been rather rough! Her O2 levels started at a 90 today so her PT was smart about making sure breaks were taken and they did several actives that worked on helping her muscles while sitting, but Jilli worked really hard today despite it. We are going to continue to do weekly PT. We are also going to be participating in a clinic at Marquette for kids with lung troubles and PT needs. I am excited to see how that goes!
OT: We talked in PT today about some more of Jillian's sensory stuff that is going on. We are noticing more and more that she is having a harder time with noses. She is telling people to be quite in stores, she informs them they are too loud (sorry if my kid tells you to stop talking, we are working on more socially acceptable things to say!). In church this Sunday she covered her ears with my hands and just rocked during the message, and when I tried to move my hands she pulled them back on. We were are dinner this weekend and the noise in the restaurant was too much for her so she had to go outside a few times. As a special ed teacher and a former autism therapist I see the sensory overload signs for when they are, her hitting her limit, so we are working on ways to best help her with her sensory needs and figuring out what best helps her. Jillian's PT is going to talk to the OT to see if we can all brainstorm ideas together (this is one of those situations where even though sensory is my specialty, when it is your own kid it is good to have a second set of eyes look too just because things are different when they are your own kid that you interact with all of the time)
Baclofin: Jilli has officially been weaned off Baclofin. It did not work in the way any of us were hoping and was causing increased muscle weakness which is definitely something Jillian does not need more of. We had to wean her off over several days because it is a med that can not be cut cold turkey. We were all hopeful that it would help, but it did not so I am glad she is off of it.
Sleep: The only reason I can type this right now is because our house got sleep last night... something that there had not been much of lately. Between stress and the fact that Jilli thought sleeping from 11pm til 6am was all the sleep she needed (add the fact that her pump demands attention at 10pm, 2am, and 6am each day) we were all getting a little slap happy from our sleep deprivation. Brent kept asking me why I looked so angry and I just responded with tired! I am so thankful for a good night of sleep last and and for the fact that Jillian went to sleep before 9pm tonight. Oh the simple gifts in life.
Reflux: Well, that has rather sucked that past few days for her. Saturday morning I woke up at 5:30am to the sound of stomach acid going up and down her throat, yesterday she almost puked, and today she kept having to stop during PT to swallow reflux back down. I think it is a mix of med change, little sleep and the fact that this weekend was really hard on her. She goes through times when her reflux struggles more and this just seams to be one of those times, just hopeful that it calms back to her baseline before too much of it ends up into her lungs. She is a trooper though, if I had heart burn like that I would not be happy, she takes it like a champ and does not complain!
Genetics: Last week was hard for me finding out that Madison can not get us in for our genetics or neurology second opinions until January and February. Right now that feels really far away. Last week genetics mailed me a packet to fill out about Jillian and I filled it out and mailed it back the next day. Hopefully my eagerness in mailing it back so quickly shows them how much we would like an appointment so then hopefully we are able to get in if there are any cancellations because they already have our stuff. I can be hopeful right???
Medical records: I sent in two weeks ago asking for a copy of all of Jillian's medical records at Children's. I want to look at everything in detail myself. I want to make sure we are not missing something. I called last week because I had not gotten a message back saying they had recived my request or any information about if they were processing our request. When I called the person informed me that the copy company was indexing it.... I am starting to wonder what size package it is going to arrive in! They still have not told me if there is a charge and if there is how much it will be... here is to hoping a reasonable price!
Tubie Friends: Jilli has been really interested in helping make Tubie Friends lately. It has been so sweet. She has been helping me make them and will read the animals a story before we put them in the mail. It is such a great organization and I love getting to teach her to help others.
Boots: if you know Jillian you know clothes and shoes are her thing! Like my two year old tells me most days what she would like to wear, what hair bow and what shoes. She likes to match. She has been begging for a pair of tall boots for a while however there are not many in her size or they do not work with her orthodics. This weekend we found her a pair of boots that work for her. She is so excited!
Clothes: She also scored jackpot on clothes shopping this weekend. Carter's had a HUGE sale and an additional coupon and she needed pants. My mom and I went in and literally looked at almost every pair of pants in the store to see what we could make work for her. She is such a different shape apparently then most kids pants. She has a very tiny waist, tiny butt, however her legs have grown some in length. We walked out with 5 pairs of pants that work for her!!! I am so excited because we were getting very low on fitting pants right now (this does not work well with med ports that pop open and all poop that comes out comes as liquid and she goes days in-between pooping...). She is wearing anywhere between a 9mo and we found two pair of 2T pants that fit. This girl is like shopping for woman's jeans! I figured we had a few more years before pants became this much of a struggle! The problem with most pants is either they are long enough but too big in the waist/crotch (like most 18/24mo pants the crotch hangs almost to her knees, any girl who has warn ill fitting tights knows how comfortable that is...) or they fit perfect in the waist but are just a little too short, especially when she sits. I have learned how much this weekend the difference can be between two different pairs of kids pants that are labeled the same size. We also hit up Janie and Jack's friends and family sale online this weekend and got her Christmas dress from their clearance sale (gotta love clearance plus coupon!). Their dresses by far fit her the best right now and I love it when I can get one of their dresses cheaper then a Carters dress on sale at Kohls! Their quality by far is better then most other kids clothes (my kid is in her third fall wearing the same size clothes and most kids clothes just are not made for that), however their prices are typically crazy and way out of budget so I am super excited when I find clothes from there in the budget!
Favorite things: Jillian's favorite things right now include, her little people princesses, the baby dolls, coloring, Duplos, potato heads, and playing board games. Her favorite TV shows are Sofia the First, Bear in the Big Blue House, Mother Goose Club, Disney Sing-Along Songs, watching Disney parades on youtube, and Daniel Tiger. She loves the iPad and enjoys her Daniel Tiger games and her Disney games the most. She loves to sing and it is adorable to listen to.
So, that is our Jilli update right now!
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