Amazed

Hi everyone!

The last couple days have gone pretty well, Ella is enjoying her "vacation home". We are definitely learning how to take care of Ella in a more efficient way and things are taking us less time as the days go on. We are starting to memorize all 33 doses of medications that she's receiving throughout the day (😮) and her feeding schedule as well. We still have not had night nursing, so we are learning how to run off of 4-ish hours of sleep while juggling Eli and Ella during the day too. Thank goodness Matt has weekends off!!! Our parents have also been helping out a ton and we couldn't do it without them.

Saturday was the big car wash!!! We decided we should stop by and time it to see how long it takes us to get out of the door so we will know how to prepare for Ella's cardiologist appointment on Tuesday. We got ourselves and both kids clothed before we started the process and it still took us an HOUR. So I will have to start packing up by 7 on Tuesday to get us to Sacramento in time for her 10:00 appointment! Isn't that crazy! Just switching and packing up all of Ella's equipment takes a long time. Eli was being a bit difficult before we left and not 10 minutes into the drive he fell asleep. We knew he was tired! Once we got to the car wash Matt and I looked at each other and said, "I can't believe this is all for our baby girl." We were (and still are!) seriously overwhelmed by the generosity of our community and all of the work that Economy Pest Control (Matt's work) put into making it such a success. We sat in the car while Eli slept and people were able to meet Ella! (P.S. I'm sorry to those of you who we missed!!!) It was perfect because she was in her carseat and people just hung out by her window to say hi so there wasn't much risk in exposing her to so many people. She just watched everyone as they came by to say hi to her. Matt told me that Ella is probably the most famous person we will ever meet! HAHA! 💜 Eli slept for a while longer then woke up and was so excited to see everyone there. He and Matt got out of the car to go talk with people and try to pitch in with cleaning people's cars. We couldn't believe at the turn out. We are so blessed to live in this community where people really do care about others, even if they don't know them.

Once we left, I told Matt that seeing everyone and getting out of the house for a while filled me up! I felt so happy. We got home to my mom rearranging our house to make our couch from the living room fit in Ella's room so we won't have to sleep on the floor anymore. She gifted her (amazing) couch to us for our living room and it has made such a difference for us!!!

Matt read to Eli and Ella for a long time this morning on the floor in Ella's room while I cleaned a bit of our house. It was so so cute. He's such an amazing dad. I cannot imagine going through all of this without him.

How cute are they??

Tomorrow (Monday) Matt goes to work and today I got a text saying that our nurse is sick so I am on my own! Thankfully, my mom is coming during the C-R-A-Z-Y time in the morning before she goes to work  and our cousins are taking Eli to Apple Hill for the day, so I think I will be able to handle it! It's the time between the 8 and 9 o'clock hours that are really tough for us because Ella has 11 different meds that she gets, 3 of which are through a nebulizer, as breathing treatments for her lungs, which take a total of about 40 or so minutes to do. But after that, her afternoon is pretty smooth sailing with only 5 meds due until 5pm. So I think I can handle it.

The parade that we have to do is pretty comical just to move Ella from her room into the living room. It's about 15-20 steps away and you'd think we had to prepare for a 5K or something! First, we have to disconnect her from a few things then move some of her equipment into the living room. After all of that, we are able to carry her into the other room, but it takes at least TWO people. One carries the baby, one drags the oxygen concentrator and the ventilator alongside the other. We have to make sure that we go together or Ella's trach gets pulled on. It is quite the production!!!

Ella's throwing up has subsided a little. I think it has gotten better since removing the MCT oil from her diet and from all of your prayers!!!

Thank you to everyone who has or is bringing us meals! It has been a HUGE blessing!!!

Thank you to everyone who came out to the car wash and to everyone who planned it and worked it!!!

Thank you for all of your prayers!

See photos below!

Love,
Jillian

Eli playing with his little sister

Look at how huge she is!

Hi, my name is Ella and I'm really cute.

At the car wash checking people out. We have yet to work on the smiling since the stroke.

Thanks for the sweet picture Gail!

If any of you have photos from the car wash, please send them my way!!!