Brown and Pink Polka Dots : Our mini cold break

It has been a rather productive relaxing week here.

Monday: We had school and then Jillian had therapy. She only had PT because her speech person was sick. We then ran to the post office and Joann Fabrics. We came home, she took a nap, I got a couple of things done and we had Jaime and Jason over for dinner.

Tuesday: We had school, then we stopped at Walgreens. Then we came home, while she napped I called her state insurance company, set up our online account for our new insurance, and talked to the kind people who helped me reset my forgotten password for Jillian's collage fund. The three of us hung out at night.

Wednesday: We found out Tuesday night that there was no school on Wednesday meaning stay inside and keep warm day for us! It was a super productive day! Made several Tubie Friends, and worked on cleaning in Jillian's room. Jillian does not sleep in her room and it is mainly used to keep her clothes and stuff she is too big for. It had become a pile of pack'n'play, bouncer, infant toy mess. Things would just get thrown in there when she did not need them anymore so the room was a disaster! On top of that I needed to go through Jillian's clothes. She is in an odd size right now. Most 12mo pants are too short, but 18mo are WAY too big around the waist, and most are too long. Shirts are a little better then pants, but still in that gray zone between 12 and 18mo. She really has a 9mo waist and 15mo length... but they dont make that! So, we spent a good amount of time trying clothes on to figure out what fits. I pulled out a lot of clothes to pack away. Oh the joys of being an odd size! I feel like we are already experiencing the pains of finding clothes to fit a female and she is only 2! Thankfully I found a couple of pairs of pants that will get us through, with how tiny her waist is, she may still be wearing her 9/12mon clothes again for a 3rd summer. I know she does not look as tiny as her wait is, but that is her tube and belt making that illusion. Since we ordered her first g-tube belt when she was 6mo old she has lost 3inches around her waist. I know toddlers are suppose to grow in length and slim up but clothes shopping for this is interesting!
We played a new game on Wednesday and I would highly recommend it for any kid 18mo-4yr. It is called "Seek-a-Boo!" and it is a lot of fun! It kept Jillian engaged for over a half hour. I would also recommend it to speech teachers and it was a great game to work on Jillian's speech! I think we are going to bring it with us on Monday to speech.

Thursday: Jillian had a 1:10 appointment at Children's. We left around 11:45 to make the 54mile trip. Between Moorland Road and the 894 on ramp there were 5 accidents! We got there at 1:00. The parking garage was packed but I amazingly got a super close spot. We were being seen in the allergy clinic. A couple of Jillian's doctors suggested that we go there to see if there are any environmental allergies playing a role in her lung issues. I have a lot of allergies and Brent has hay fever so allergies are not that out of the norm for us. We got there and they handed me a 4 page questionnaire. I REALLY prefer it when clinics mail these to me ahead of time. Jillian's medical history is long and they always want dates and obscure things and I am sure for most people these forms don't take long to fill out but for Jillian they take a while. Add to that trying to fill them out quickly while entertaining a 2 year old!
They took us back to do vitals. Jillian does not like having her pulse ox taken so she fussed for a minute and then was fine. She did a pretty good job with vitals. Part way through someone came over and they had a glow worm doll that they gave to Jillian. She was in love with it and called it baby. She was rocking it and pressing its tummy. It was so cute! They took us to a room and a nurse came in. She went over a bunch of pre-doctor questions with us. Then we waited. Because of the snow and bad roads a lot of people where getting there late meaning a lot of us arrived at the exact same time. We waited for an hour for the doctor to come in. I was SO grateful for Jillian's new toy then! I had toys packed with me but a new toy is extra cool so she played with it for most of the wait.
The doctor came in an we talked. He wanted to make sure that our visit there today did not have any connection with our visit with immunology and giving Jillian vaccines. Once I told him we were there to look to see if allergens were affecting her breathing it was like a weight came off of his shoulder. (I don't think I was a jerk to immunology, at least not enough that I should be know for it, and if we do look into her shot issue again, we will be doing it at a different hospital, I don't think that after our experience with that situation that we will go back to their immunology clinic) We talked about Jillian's reactions to dogs and what medications she is currently taking. She is already on Zyrtec and has been for a long time. She also takes advair. Pulmonlogy added a nose spray in December, but told us to use it when she has a runny nose. He wants us to start to use it daily. She actually really likes her nose spray so I am hopeful that goes smoothly. He looked her over. She always has dark circles under her eyes, he said they make it likely that she has some environmental allergies going on.
We then talked about options. He said we could either do the blood test or scratch test. We discussed the pros and cons for each and decided that for now we would do the blood test. We then headed down to the lab.
There was almost no one in the lab so it was quick to get in. I sat in the chair and held Jillian. As soon as the stuff all comes out for the blood draw she starts to whimper. Really for a 2 year old who has had the amount of blood tests that she has she does an amazing job. She sits still and does not try to touch the needle or what they are doing. I hug her but I don't have to restrain her. She cries a little but it is not an uncontrollable sob. She is amazing. The tech put an Elmo Band-aid on her and she told the tech "thank you." It was so sweet! The tech was so proud of Jillian that she gave her a toy phone. I think sometime we are going to need to hold a toy drive for Children's so we can help other kids smile and feel loved just like Jillian did yesterday. Little things like that don't just make Jillian smile, they make my heart smile to see them loving my kid. It is so much more then the toy, it is a feeling of being cared for. Reasons like that are why we make it a point to give back to Children's and participate in the walk/run each year (yes I am already thinking about this year's walk run and what we are going to do)
We then headed for home. We were going to meet Dan for dinner but after our drive there I told the boys I was headed home after her appointment. There were less accidents but is was VERY windy and the blowing wind made it hard to see at times. It took over an hour and a half to get home. My dear sweet child decided that napping in the car was not for her that day and that yelling at her phone to get out of the box was more fun. She was not crying or upset, just yelling at it in jibberish.
Brent got home and we had some dinner. We all hung out. Jillian played in her new therapy room that we made in our laundry room (I will get to blogging about that soon). She had a lot of energy to use after our 5 1/2 hour trip to Children's and back in which she sat for 95% of those 5 1/2 hours. It is sooooo funny to watch her "jump" on her trampoline! She can't jump so she marches!
After she went to bed Brent and I about Jilli future. It is not something we talk about much. We just live in the day to day. Her future has some unknowns to it. The conversation started because we were talking about how some stuff with how feeding tubes are made is being changed. It will be good in the long run just this next year is a transition time while everything changes over. I first heard about these changes a year ago... and while I knew Jillian most likely still have a tube when the changes took place there was a part of me that thought briefly that maybe these changes would not affect us. I was asked to fill out a servery today for a special needs magazine today about parent feelings about feeding tubes. In the comments I wrote that at first I wanted to get rid of it quickly, however almost 2 years in I having a loving respect for her tube. It keeps her alive. I told Brent last night that it is not that I want her to be tube fed forever, but if that is what keeps her alive then I do want it to stay around as long as she needs it.

Today: We are taking today slowly! We worked in her room a little bit more, I did some more Tubie Friends and got all of my done ones ready to mail out once it warms up. I worked on some lesson planning (no just because teachers have had 3 unplanned days off this week does that mean that we really are not working, there is too much to do and get ready for next week to not work on stuff). Jillian has been watching Disney Sing along Songs videos. When redoing our DVD storage after Christmas we unJillian proofed her DVDs. This means she thinks she can bring us a movie any time she wants to watch it and thinks we should jump to put it in for her... this is a hard lesson for her! I have been telling her no most of this little break to watching movies because I wanted to get other stuff done and because I don't want her to sit and watch movies all day. Movies are great, trust me, as I cooked dinner for having people over on Monday putting a movie in was the only way that was happening but I don't want that to be the only thing she does. Right now she is in LOVE with the Disneyland Sing Along Song DVD. The bonus is that it was one of my favorites as a child so I don't mind watching it over and over, plus it is only 30min long. Today we branched out to some of the other Sing Along Songs DVDs. Sadly they did not turn a lot of them into DVDs, most of them are still only on VHS. We watched the Camping Fun and Beach Fun ones today. She loves to dance around when they are on. I even gave her the choice today between the Camping Fun Sing Along Songs and watching Frozen and she choose Camping Fun! I love how much she loves music!
Now she is taking a nap! It is the first time during this little cold weather break we are having that my sweet child is taking a nap. Not sure why but she decided that cold weather days are not for sleeping... not sure what is wrong with her lol!

So it has been a good little break for us! I got a lot done. These days off were a gift! Sometimes God sends a little snow and freezing weather as a gift. I am sure that a lot of people are not seeing our current weather situation as a gift but I am choosing to!

Sunday: