Exhausted but still kicking butt

 

That was my face at 8am therapy on a Saturday too. 

 

Our good friend from school came to visit on Saturday. It was really fun having them. Weekends here are very boring with nothing to do. Her friend is the sweetest with Ailyn. Cheers for her when she does good and helps her walk. 

 

 

I need one of these at home. It looks her in! Best invention ever! She was getting to be a danger to herself so we caged the beast. 

 

What is that you say? Ailyn can't be a beast. She's the sweetest thing. No. Her poor Bubba was one of her victims too. The psychologist and I are sitting down without her tomorrow and talking about her behavior. 

 

Mommy needed a mental break and needed time with Camden. We spent the night together watching what 11 year olds watch on YouTube. He even cuddled with me in the morning until he woke up. I refuse to believe he's graduating 5th grade next week. 

 

Panera and Greetings and Readings made a great date. 

 

Then back to the hospital for some family time. 

 

Lots of school work. She can't get enough out of doing school workbooks. Totally not my child. 

 

My friends have been amazing! THANK YOU! 

I saved her updates until the next post. Coming right up. It starts with s very special friend of ours. 

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My sour patch kid is back

Ailyn got the nickname "sour patch kid" as a baby. Remember those commercials where the sour patch would cut off someone's hair then hug them a second later? That's Ailyn. Sweet and sour in seconds. 

We started a behavioral plan here. It's like a point system. She can win prizes for being good. Honestly she's not going to care much about it. Losing points is not a big deal to her. Winning prizes.... Maybe. But, I had to set something up. She was hitting, scratching and pinching. Very impulsive but knows what's she's doing. She immediately will apologize for her behavior but will do it again a minute later. Exact behavior we dealt with for years with her. 

Of course it's from working very hard. She's exhaused, in pain all day and night and not in her own environment. She starts therapies at 9am and gets done at 4pm. Plus she has school for a hour in between therapies. Adderall is our best friend. 

Even with all that our experience here has been amazing. Each therapist works her very hard and knows to push her even though she will say she can't do something. She is using her words in sentences to everyone. And, they understand what she says. 

This week we started hydrotherapy. The pool is 95 degrees. Ailyn loves it! She will get it 3x a week for a hour. The first day she didn't move her right leg much but today we saw improvement. 

 

Ailyn loves doing school work. She can do it for 3 hours strait. I have learned to ask her if she wants to do "homework" if she can't calm down

 

Miss attitude 

 

Auntie Heather has been AMAZING. She has done so much for us since we've been in here. 🦄

 

Eating is pretty much not happening. Refusing every meal. Her fluid intake has been too low also so we are pushing liquids and starting Carnation instant milk. I don't blame her for not eating the food here but she's refusing food we bring in for her too. 

 

Yesterday I got a vacation for the day. Daddy stayed overnight with her. Their first night alone together and an entire day! I photographed my friends grandchilds birth. Sally was both of my kids first teacher. I was so excited to do this for them. The baby boy is so beautiful and healthy. 

 

Homeschool is going well. She is tired and gets very frigidity but it's expected. Her teacher is very nice. 

 

Tonight is pizza night! Maybe Ailyn will eat it since she loves pizza. 

Daddy is going to stay with her tomorrow night again so I can spend some time with Camden. We are both missing each other. 

Have a great weekend! Check back for more updates! Yuba the therapy dog Ailyn loves will be back next week. So excited to get them back together. 

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Weekend hospital life

Note to self- plan stuff for the weekends while we are here. Ailyn and I normally love to have a routine. We go a tad crazy sitting in "the cave" as I call our room now. I think it being a holiday weekend didn't help. 

No therapies for 2 days but I still made her work hard. And, the hard work is paying off. She can now walk down the hall with less breaks. 

 

We had a friend visit us yesterday. Thank you!!!

 

Ailyn has been very bossy to everyone here. She can manipulate them with her cuteness. They fall for her "please" She's had nurses feeding and changing her baby. She makes all the techs, cleaning people and nurses get a checkup. 

 

I love that she's talking sentences here but yesterday she yelled "Hey girl, is her birthday tomorrow?" To a nurse 🙈 Or she will see someone walk by our room and say "Hi!! All sweet, then say "come here now". Of course they all do. So we got to work on being polite when we talk. 

 A little baby turned ONE today. We had a party for her. Of course I had to buy her gifts because she's the cutest little nugget. 

 Some bedtime tricks 

  I can't go far out of her sight. She comes with me everywhere I go. 

Look at that face. Her tooth got really loose a couple days ago. She stopped eating. Which is not good when they watch everything she eats and drinks. She's always been a little underweight since the feeding tube came out so she has to eat! They won't let her leave! So Mommy pulled it out. 

 

Ready to party today!

 

My morning Glory bloomed. Glory is thinking of us ❤️

 

I miss my Camden. We only spent a couple hours together today. This hospital stay has been tough on him. He hates having to come visit everyday. I don't blame him. It's not a fun life. We try to make things as normal as we can for him but it's not easy. 

 

Camden and I brought our butterflies back to release them. Ailyn was very sad to say goodbye. 

 

 

Our day starts early tomorrow. This week will be tough with no breaks until Sunday. So check back to see her progress. I'm going to upload some videos on our YouTube that I have taken. I will post the link here. 

Hope you all had a great holiday weekend! 

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Already kicking butt

Everyone who knows Ailyn knows that she will never give up. She will try and try again until she gets it. She pushes through pain that most adults couldn't get through. She has been a fighter from day one and amazes me with her determination.

Today started bright and early at 5:45am when the nurse came in to take A's blood pressure. She couldn't go back to sleep. Therapy started at 9am with PT 

 

 Little crazy but her PT picked out a Strawberry knee brace without knowing Ailyn's nickname 🍓

 Walking is a huge challenge right now. Her hip is very sore and the pain radiates down to her ankle. She put very little pressure on her right leg. A few steps wears her out. But, she walked a good distance for her first day. Of course she gives her breaks but she kept on going. 

  We got to play in the playroom until speech. 

 Ailyn being Ailyn was very bossy and had the Child Life volunteers doing anything she wanted. One was feeding her baby while she played Go Fish. 

 This is Ailyn 4 years ago with her speech teacher. Ailyn talked in complete sentences and showed off all her new words. 4 years ago she couldn't say two words together. 

 Back to PT after lunch! A was so excited to ride this bike. I wasn't at this PT session. I enjoyed time outside alone! 

 Ailyn is now well known around here for her love of bubbles (thank you Mrs. Williams for the new obsession) You say "bubbles" and she will do anything. 

 Ailyn's very favorite person came to see her. She brought her favorite. French fries, hamburger and Coke" She bossed Auntie around and even had her nursing her baby doll. Thank you Auntie 🦄  Hot baths have been her favorite thing for her hip. She's in a lot of pain tonight from all the hard work. We just got done stretching and are waiting for Daddy to visit. 

They do have therapies on Saturday's but not so busy. Anyone local that wants to visit please do! 

I will be updating her progress often so check back when you can! Thanks for all the support and love. 

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2 years later......

Life got crazy and my blog was sadly forgotten. I'm a little sad because I documented 5 years of our life and just stopped blogging the good, the bad and the very ugly. So much has happened in 2 years. My Dad had cancer and beat it! My sister married an awesome guy, Ailyn walks independly, her speech has come very far, Camden is 11 and starting middle school, we had 2 more cousins born. And, sadly our Glory Grace passed away at one month old. She will always be apart of us and I miss her everyday. So much more that I can go on for days. 

I had posted that Ailyn was diagnosed with hip dysplasia many times. The orthopedic doctor watched her very close. She had yearly x-rays. We switched doctors a couple times. The doctor we loved left the hospital. He had wanted to do the hip surgery around 7 years old.  The doctor we chose at KK was not being proactive. The x-rays were always not done the way he liked so he would just tell us to come back 6 months later each time. A PT we saw recommended getting a second opinion. When we went to Hopkins and the doctor saw her X-Ray he said she needed the surgery now. Her hip was 43% out of socket and she was complaining of some knee pain. So a week later she went in for surgery! It was unexpected but we have been ready for this surgery so we were excited to get it done. 

I've decided to use the blog for updates. A few family members and friends don't use Facebook and it's tough to update each person. 

Ailyn had an open reduction, pelvic osteotomy and tenden lengthening. She has pins and plates that will need to come out in a year. The surgery was done on March 2nd. She was on 6 weeks of strict bed rest wearing a cast and a hip imoblizer wedge. We had home and hospital come out to our house for the services she receives in school. A teacher came 2 hours a day 4 days a week, speech 3x, OT 1x and after the 6 weeks PT came 2x a week. 

After 8 weeks Ailyn was still in a lot of pain still having to take strong painkillers and Valium. By 12 weeks there was not much progress and the pain was still intense. I took her for an X-Ray to make sure she was ok. The NP suggested inpatient therapy. Very long story short, it took a month to be admitted to Mt. Washington children's hospital. We are very familiar with this hospital. It's where Ailyn did years of therapy. Yuba who is the service dog here was the one who Ailyn took her first steps to. She even made the news with Yuba and another YouTube video with him. So she was very comfortable when I told her we were coming to stay at Yuba's house (and of Yuba is on vacation until next week) 

 

And, this is where our story begins..... Her day is very busy. It will start at 8:00am some days and end at 4:00. They have Child Life here who plays with the children. 

 

 

 

I'll make another post about her first day today. It has been very intense but I know this is going to be the best thing for our Strawberry 🍓

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Snowy week

Prince Camden sitting in his "snow chair" while Mommy made an igloo. FYI- do not attempt to build an igloo with the sun shining right down on it. It will melt and fall over.

Oh, the sadness! Gavin looks like he has no clue how to handle this situation. Ever since Ailyn saw a picture of her belly with her feeding tube, she wants me to take the scar "off". She asks me 1000 times a day.

Look closely...that is Aaron down the window well lifting our 75 pound dog out. Cash was running around all crazy in the snow. I heard a huge crash. Thank God he was ok! There was no way we could get him to a vet. 

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Winter over yet?

6/52

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A boys best friend.

We lost power for 15 hours. The quiet around the house was actually so nice! No TV or electronics. I even worked the fireplace on my own. That's a huge thing for me. 

Every.single.God.dang.time. I take a picture, Cash has to be in it. How cute are these two?? 

                                  

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