Back at home

 

Super girl is continuing to make great progress! We've had a busy two weeks back at home. We started PT at a local therapy place. She will get hydrotherapy 2x a week. She still needs more intense therapy so our insurance referred us to Home Care. It's 100% covered. Seriously the best news ever. We have been so stressed with medical bills and copays. It's nice to finally have something work in our favor. A nurse came out to evaluate Ailyn last week. I think the nurse left here thinking Ailyn was the devil. She was so naughty the entire 2 hours. I even made a joke and asked if they have behavioral therapy..... Maybe I was kidding. But, as Ailyn likes to say now. "I'll be good tomorrow" 

The PT evaluation was today. The PT was very confused why she was still in so much discomfort. She said most patients she sees right after the 6 week mark to start home therapy. I've heard this many times now. Intense PT was not brought up until the 11 week Mark and only because I knew she progressing slower than normal. No PT or Doctor told me she needed more. 

 

The PT is going to come twice a week. We are hoping to have OT come to the house as well. 

 

Thank you to my Mom and Logan who flew down for Camden's 5th grade graduation! I wish you could have stayed longer. 

 

Camden enjoyed his graduation party. 

 

 

 

Father's Day we took the kids to see Finding Dory. It was really cute. Ailyn has never sat through an entire movie. The 2 other times we brought her to a movie she fell asleep. She watched the entire movie and didn't move!!! 

 

Happy Father's Day Aaron! 

So happy it's summer! I see many sleepovers with our Bubba in the next couple months. 

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Last Day

Friday was our last day at Mt. Washington. She had a full day of therapy before she went home. As much as I wanted to go home a part of me was so nervous it was too early. Ailyn cried when we left. She said she had so much fun there. She's going to miss all the babies. 

Ailyn's homeschool speech teacher came to visit her. Ailyn loves her. These two have a cute little bond together. Mrs. G has taught Ailyn to talked in complete sentences. We are going to miss her when school is over but she has already promised to stay in touch. 

 

If you know me well, you know that I don't let Ailyn go on busses or field trips by herself. Ever. My. Washington's Child Life takes the kids on a weekly field trip. The parents can not go. They like to see the child in another setting and teach them to be independent. I didn't have an argument..... I did try. Child Life was amazing and I knew Ailyn was in the best care. 

 

And, again if you know me well you know that I am car seat crazy. My 11 year old is still in a booster because he's too short. I don't care if he goes to high school in one. To prove my point, the seatbelt cut Camden's neck the other day in Daddy's car. Boom. So seeing Ailyn in her stroller, in a bus, with not a lot of retraint was killing me. But, she was so excited! She kept saying "Bye Mommy I will miss you!" 

She did amazing like I knew she would. They went to a local nature center. She wanted to hug all the animals and reptiles. She asked for me once! She talked the entire time! I'm glad I let her go. 

 

Meagan from Child Life is so great with the kids. She not only plays with them but teaches them. She didn't let Ailyn boss her around. She taught her how to say "excuse me" when she wants my attention instead of her yelling "Mommy" over and over. 

 

I forget the name of the program that comes once a a week. A girl brings an art project for the kids to do. It's always a teaching lesson. This week was mixing colors with chalk. 

 

 

Ailyn graduated Kindergarten and is now a first grader! Sadly we couldn't make it to her school graduation but we had a party at the hospital! 

 

So proud of her. She's worked very hard all year. We held her back another year and it was the best decision.  She is more than ready for first grade. She loves doing school work so we will continue to work all summer. 

 

And, Yuba once again proved that he has magical powers. Ailyn stood and played ball for about 10 minutes! 

 

 

 

Ailyn walked up the stairs and would call Yuba to come. They had to walk back down. I see huge improvement in her walking steps after surgery. 

 

Taking a break ❤️ 

 

We will miss you Yuba! Be back soon to visit! 

 

A and I made a picture book for everyone thanking them for being so good to her. 

 

 

It's good to be home. Ailyn has a long way to go before she will be walking independently. She will get outpatient PT twice a week. We have a daily exercise routine to do. She asks to be stretched throughout the day. So hopefully we keep her progressing. 

Thanks for keeping up with our Strawberry. We appreciate everyone for being so supportive. 🍓

Check back for more 🍓 

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Sweet reunion

Ailyn used to come to therapies at this hospital for years. She was quite the celebrity here. She loved everyone and made sure to make everyone love her back. She was on the cover of their annual report when she was 4 years old with OT. 

 

But, our very favorite thing about coming here every week was to see Yuba the therapy dog. Ailyn took her first steps to Yuba. Yuba had just started here at the hospital. Ailyn would do anything for Yuba. 

 

 

 

They even made the news together! And, a YouTube video for the hospital. 

 

 

We stopped private therapy to focus on school. But, we have followed Yuba's journey very closely on their FB page. 

I bribed Ailyn into coming inpatient by telling her we will see Yuba again everyday. Well, little did I know Yuba was on a weeks vacation the first week we were here. 

But! Yesterday the two reunited again. I will let the pictures write the rest. 

 

 

 

 

 

We love you Yuba! 

Ailyn's day starts bright and early. Today was 7:30 until 6:00! She did have a 2 hour break in there. 

 

Check her out!!!! Standing on her own!!!!! Huge! 

 

She's walking a lot farther. She still won't put much weight on her right foot but I can tell she's getting stronger. 

 

 

You should have seen her ride this bike! It's on my snapchat and FB 😉 It was nice to get outside! 

 

It has been tough watching Ailyn have to relearn milestones that she worked so hard to master already. She amazes me with her strength. She will push herself to complete exhaustion before giving up. 

 

 

 

We had a meeting late last week about possibly going home on Friday. But, just like in the NICU, you can't say the words "go home" out loud. Something always happens to delay it. Their biggest question is if I feel comfortable taking over her care after we are back home. To be honest, I don't know the answer yet. I really want to be back home but I also want Ailyn to be ready. This week she has shown so much progress so it's reassuring to me that she's going to do well at home. But! The hospital is trying to find us outpatient PT that isn't $100 copay each time. So far the places are too far away to travel 2x a week. I am hoping for good news soon. 

 

Yeah..... Just our luck. I guess I ran over a screw. Good thing we are stuck here anyway! 

 

 After our very long day we sat outside. We FaceTimed our cousins and practiced new tricks. 

  

We have an 8am start tomorrow. I have been waiting to go to bed since 2pm. Have a good night everyone! And, thank you for checking in on us! 

 

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