Friday, September 21, 2018

We made it to Friday

Ever have Fridays were you just want to give yourself a cookie for making it through the week?

We had a great weekend. On Saturday we participated in the Run/Walk and had an amazing day with friends! It is one of our favorite events of the year. We also almost reached our goal!!!! We raised $2,916!!! Thank you to everyone who helped!!!

Sunday we had a calmer day. I took a bunch of pictures of Jillian looking so big in one of her kindergarten dresses.

Monday morning Jillian woke up and started to cough her classic heading downhill cough. We started the emergency plan immediately with nebs and steroids. Jilli spent the day on the couch and we would convince her to sit up for periods of time. She barely peed all day but she has just enough output that we did not need to head to the hospital.

Tuesday was much of the same. We were living hour by hour. We debated all day if it was time to head to the ER yet.

Wednesday Jilli did better at PT and Speech then we thought she would but she only made it half of her normal time.

Wednesday night Lydia's allergies started to become an issue and all night long you could hear mucus running down her throat all night and she kept choking on it.

Thursday all of the steroids hit Jilli and she spent much of the day crying and very upset. You can normally rationalize with her and nothing worked. She was getting mad about things that did not even make sense. Lydia did not feel great either. It was a long day.

Today they both needed nebs however Jilli was able to complete her school work for the day. We did school on Thursday but it took hours and so many tears.

Brent and I are both running on little sleep with two kids cough through the night and nebs for days but we have made it and the girls are showing signs of improvement today.

This time of year is historically hard for Jillian. She often does not feel good and is sometimes hospitalized around this time of year. Thankfully this year we were barely able to squeek by out of the hospital and rode this out at home with lots of med.

This week we also got the windshield finished. They came last week to fix it but then they broke the new windshield in the process of putting it on so they came back yesterday to fix it. We also caught two mice!!! Finally. We have had traps all over the house for weeks and so many messes that we have cleaned and we finally got them!!!!  

Here is to continued improvement!


Friday morning nebs


One of our friends from the chw foundation who helped us get air in the stroller tires










Jilli and her friend Grace





Team Jilli and Lydia












Jilli and cheese playing Playmobil


Jilli love Uno!













Friday, September 14, 2018

Life updates

This month has been a weird one.

We literally have had ants in the kitchen wondering around, a mouse in the house and a snake that came out of the oxygen concentrator. Yup, its been interesting here. We typically get ants that try coming in this time of year but we have never had a snake or mice in the house before... apparently since we have lived here for 6 years now they think we are settled enough for them to visit.

Homeschooling has been going really well. Jillian is doing a great job. I am writing our curriculum this year but I am also using 180 math, science, reading, language arts. and writing mixed in and Jillian is really loving that. I love the 180 writing best. We have also stuck with our goal of Jillian reading a new book each day.

Lydia's tube site still has been very stressful and it has taken several trips to the doctor and still no real solution. It is painful for her and frustrating for me. It is also really effecting her sleep and she is struggling to fall asleep even with meds and is up multiple times a night. I believe Brent and I are just walking around asleep at this point but we keep chugging.

On a trip to the doctor last week a truck sent something flying at the van. I could not see anything at first but Saturday morning we noticed a crack and then it grew. We had someone come to the house today to replace it and just as they finished the new windshild cracked. They are coming back next week to fix it.

We had a great time last weekend at the Special Needs picnic. It is nice to see friends and catch up. Jillian loved getting her face painted. The purple paint doesn't want to come off lol

Jillian and I also played with her Osmo yesterday. It is something that goes with the iPad and teaches multiple different skills. When Toys R Us was going out they had them on clearance so we were able to get multiple of the sets. Jilli got the base set last year for Christmas but she was really excited for the additional sets. I am really impressed by the Pizza set. It works on counting, patterning, budgets, and making change. It teaches so many life skills! I highly recommend the Osmo sets if you have an iPad.

The Run/Walk for Children's Hospital is TOMORROW!!!! We are a bit short of our goal this year however we are SO SO SO thankful for everyone who has donated. We are so thankful for everyone who has signed up to walk with us tomorrow. Jilli is SO excited! If you still would like to give there still is time. CLICK HERE   to donate.


We went to the stuffed pet adoption event at Target where Jilli picked out a dog for her Our Generation/American Girl dolls. She named her puppy sparkles










messy bed head playing with trains



Osmo pizza shop

Osmo Math


Jilli did an estimation/counting activity for school today and once she was done Lydia wanted to try


Making a card for a friend

playing Peppa Pig