For Lily and All Ainsley's Fans

Every so often we receive a really touching e-mail from a reader who wants us to know about the special way in which Ainsley and her/our story has affected them. Sometimes I wonder if sharing our personal lives on the Internet is a good thing. These e-mail letters answer that question for me and they always seem to arrive at just the right time to reassure me when I need it.  We love every one of them.

This week we got an especially touching e-mail (It made me a little teary eyed.) and I want to share it. I also wanted to take this as an opportunity to thank all of Ainsley's fans and friends for being a part of this journey. It means a lot to us.  THANK YOU!

Hi Ainsley,
My name is Lily B_____. I am 23 years old now and an adult with special needs. My older brother Chris is helping me write this email. I was really excited to find your email address and happy that my brother was willing to help me write you a message because I think I am Ainsley's biggest fan on YouTube! 

I live in _____, California and I am your biggest fan. I love watching your youtube videos because you and I have a lot in common, I think. I was born premature and had a trach for the first 4 years of my life. I have brown hair just like Ainsley and I have two brothers, just like Ainsley has a brother. I love watching Ainsley's brother do his skunk impression almost every day. I love music and I would love to know if Ainsley likes music too?

I love watching Ainsley grow up on Youtube and I think she is really cool. I think me and Ainsley would be friends if we ever got the chance to meet.

I think it would be really cool to get an email back from Ainsley!

Your friend,
Lily

Lily if you and Ainsley got the chance to meet I'm SURE you would be friends. In fact I'd say you already are. Thank you Chris. You are an awesome brother!

Instead of an e-mail reply we thought you would enjoy a video reply. Ainsley's been sick the past few days but I didn't want to wait until she was feeling better and acting more like herself for you to get a reply.  Hope you like it.
 

Passed!

These are images of Ainsley taken during the Videofluroscopic Swallow Study (VFSS) which today she finally PASSED!!!

 

Even though she'd failed the FEES when we were in Cincinnati last year and essentially nothing had changed. In fact she should be MORE likely to aspirate right now because she had the Botox injections in April that should be keeping her vocal cords more open.

First the child is put in a chair in front of the x-ray camera.

Then the SLP mixes the barium so the liquid can be tracked during the swallowing process.

 

They even have special cookies with barium in them. This was the first time Ainsley was able to do that. Finally all the blood sweat and tears working on oral feeding over the past 6 1/2 years pays off!

 

She eats the yogurt (thick) and passed.

She ate the cookie (solids) and passed(no bits went down wrong).

She drank thin liquids and there was penetration and even a little microaspiration (Likely this is caused by the increased speed at which thin liquids flow, so in other words it's kind of a timing issue. So thickening of thins is still advised.).

She did better with the thin straw than a normal straw, as I suspected (I brought my own thin straw).

And when they thickened it to nectar consistency she PASSED!

 

Then we had her eat the whole cup of yogurt and a graham cracker and then drink and eat the barium yogurt again to see if it changed with "fatigue". Her swallow still looked good but I've been working hard on feeding so I think her point of fatigue is much higher. In other words I think she is still at risk when she gets to a certain amount of swallows but it didn't happen during the test and that's GREAT!

 

The SLP was great. She really understood the history, complexity and I could tell she knew exactly what my goals were and that I know what I'm doing. She answered questions about past findings: the vallecular space no longer looks small, her lingual tonsil tissue did not seem to be an obstruction (great to see), her swallow looked surprisingly strong for a kid with hypotonia (though Ainsley's tone isn't really classic low tone). There isn't a lot of residual left in the throat as there seemed to be in the past, meaning she's clearing it all much better. 

 

The images are projected onto this screen which you can view as it happens (hard to see here but not in real life).  Then afterward we reviewed the images and video together.

 

What all this means is that it's likely we will get the green light to transition Ainsley to oral feeding. This is a hard road for kids who've been tube fed. I expect it to take time.
And for there to be resistance.

But this time I can push her harder because I'll have the support of her doctors.

 

Keeping this in mind, still.

 

I made 12 bean soup (I had a ham bone) and cornbread for dinner.

Ainsley ate a couple bites of the cornbread, some of the veggies, a piece of ham and tried to drink milk out of a glass (no straw). I pushed but not too hard. We don't want her to regress.

 

When I think about it I nearly can't believe she learned to eat table food this year!

....or that now she has the clearance to increase quantities. Unbelievable. WOW! Just when I'd nearly given up!

After our soup dinner it rained like crazy and totally felt like a FALL day.

Except that it was warm enough that Evie and Adrian went out to run around and play in the rain. It was so cool. But I was happy to stay dry inside with Ainsley who wanted to go out until I reminded her she'd get wet. Good choice Ainsley.

 

***

Our pulmonologist was able to get a rush reading of the sleep study by the sleep doctor and he called with the results Thursday. It showed that Ainsley still has severe obstructive sleep apnea even with the Botox(not too surprising though I was surprised at the severity on Botox). The CPAP road would likely be a hard one (also not a surprise). Now... Ainsley passing the VFSS, that is kind of a game changer in my book and I'll explain why in another post.

 

I'll be e-mailing Ainsley's doctors to discuss all this. It's complex and the best route isn't necessarily clear as far as an potential plan to get the trach out. I'll be sure to post once we know what the decision is.

Locked Out! Oh no!

I have a little Monday funny for you. Last week Ainsley learned a new trick. This is an example of the type of thing Ainsley learns quite quickly, not that you necessarily want her to.

I was sitting on the bench in front of the house chatting with Ainsley's school nurse. Our conversation extended so Ainsley went into the house with Evie. Then Evie came out to ask me a question and Ainsley made her move, locking all of us out of the house!



There was a time when I would have panicked and broken a window or something to get in. Since her airway is so much better I let it go for a few minutes and eventually she came back and unlocked the door. Thankfully she was able to. I happened to have the camera with me because I'd taken some pictures of her with her nurse.

Since Tuesday she now thinks this game is da bomb! And plays it at any opportunity. Clearly I'm going to have to find a place to hide a key.

On Thursday there was a downpour. Not the best start to our summer for sure.

 

It even caught Ainsley's attention and she watched it from the kitchen window.

 

If you recall I got sick after not getting any sleep at the sleep study. Ainsley was a little sick too and pulled off her cap. I looked for it EVERYWHERE. Then she showed me that she'd opened the side patio door and threw it outside.

 

 

So I went out to get it and she locked me out AGAIN.

 

 

I got some lovely photos of our amazingly huge hostas (which I can take no credit for since they were here when we moved in and all I've done is ignore and admire them.)

Ainsley wasn't too happy when Evie and Adrian let me back in.

 

A perfect example of her using her own style of communication to tell me to "go back out". 

 

Then the kids spent the afternoon playing Legos in the dining room. Ainsley kept showing me her creations. It was so cute.

 

Later in the week we had dinner with my oldest friends (28 years we've been friends). Ainsley used to be terrified of dogs, especially the fast moving ones. She had SO much fun with Topper.

And had more fun locking us out of Kelly's house too. See what I mean about how quickly she learns, when it's something you don't want her to, that is.

Look at their grill among the figs with the grass underneath. So unique and "them" isn't it cool?! 

Disclaimer: This is a fig tree and a flowering shrub not some crazy kind of flowering fig.

Ainsley ended the night curled up with the adorable Topper. I think Ainsley is officially over her fear of dogs.  

 

Tomorrow we have Ainsley's swallow study. The results of the sleep study are in, and after the VFSS we will have more information to make a decision about what, if any, steps to take next.  

School

The stress and sleepless night on Sunday stressed my body and this morning I woke up with a sore throat. Then later I started sneezing, like seriously 300 times, it's miserable! As a mom of three I'm lucky I haven't peed my pants yet. If you don't know what I'm talking about just ignore that. My nose is both stuffy and runny. BUT....It has given me blogging time. Yes I know I should be napping instead but.... TODAY IS THE LAST DAY OF SCHOOL! I know many of you have been out for awhile. We have a mild climate and it still feels like summer hasn't really started. It was a 1/2 day so Evie and Adrian both brought friends home and I really can't nap until they go home.

I've been wanting to blog a bit about school so this seems like the perfect opportunity. We'll see how quickly I can put this post together.

First, let me say that Ainsley's nurse is here and so she is being well cared for while I'm in bed writing this post. And Ainsley loves the commotion of a house full of kids. Here she is bugging the girls, with Adrian's firework shooter, while they put on makeup. Yep seriously we are at that point with Evie that she likes to do that with her friends.They make music videos.

 

Back to Ainsley's education. In some ways we've been fortunate (it's all about perspective right?!) that Ainsley has breathing difficulties that require a tracheostomy. A tracheostomy is one of the few conditions that will get a child a nurse to attend school. The nurse is there to suction when needed, carry the equipment, monitor breathing to remove a valve or cap as needed and make sure that if the trach comes out it gets safely put back in. There have been trached children who have died at school.

 

In addition the nurse:

 

Helps with mobility (getting from A to B).

Helps with positioning (sitting standing, grabbing the walker, moving the wheelchair).

Carries her backpack and helps her with it and her coat.

Makes sure other kids don't pull on the trach.

Makes sure kids don't plow Ainsley down in the halls.

Keeps Ainsley from falling when she's trying to walk.

Helps her use the toilet.

Facilitates communication with her AAC, turns it on and off.

Interprets verbal attempts, sign and gestures.

Helps her eat snack.

Tube feeds her water bolus.

Assists with eating lunch and then tube feeds lunch.

Assists with educational goals at times (writing, cutting, gluing etc.)

Stands up for Ainsley if kids are mean to her or laugh at her.

Helps Ainsley participate in PE, music and recess.

 Acts as a pair of ears and eyes and communicates with me about Ainsley's day.

 

There are plenty of kids who would benefit from some additional support at school but few have one-on-one help and the trach does get Ainsley that additional support. It's really hard to imagine her going to school and not having the extra help. Many of the LC kids need help for various things and it's eye opening to attend school for a full day like I have when the nurses can't make it.

 

This was Ainsley's Kindergarten year which is usually a big step for kids. Ainsley has been going on the bus to a pre-school program at a local school since she was 3. Those days were about as long as a normal Kindergarten day. This year she was in the K-2 Learning Center which is a small special education class of approximately 10-12 with nearly a 3-to-1 adult/student ratio. The small class size is less overwhelming for Ainsley since she's a people watcher and gets distracted. The program is full days. Regular Kindergarten is only a few hours each day. This year Ainsley started her days in the General Education Class with the assistance of the nurse, for about 45 minutes each day.

 

The night before the Gen Ed teacher contacted me about Ainsley coming to their "end of year graduation".  I think perhaps the teacher thought it might be overwhelming for her because of the crowd. It made me sad when I thought about it that she really didn't get a normal Kindergarten experience and never will. And that she nearly wasn't included in the celebration. I don't know why I hadn't thought about it, that she would be going into first grade. I realized I should have been more involved. More proactive. Because now it is over.

 

But I put my feelings aside and took her to the party even though she couldn't participate in the same way. She had a great time and stayed for the whole thing. She didn't really notice that she didn't sing the song to the parents, that she wasn't in the pictures from their visit to the pumpkin farm or other fun things, or that she didn't form the close friendships that other kids did. 

 

 I walked her up to get her certificate, wearing her cap. What a proud moment!

 

 

She ate party snacks (I'm SO proud of the eating progress she made this year!) 

 

I was so glad she went. And glad that I made the time to go despite the last minute invitation.

 

 

The following week we had the Learning Center party. It was great to connect with the other parents and to have a chance to thank the teachers and aides who work so very hard to provide our special kids with the best education they can manage under the circumstances.

This is the para-educator who works with Ainsley and a couple of the other kids. She LOVES Ainsley which is awesome! Well everyone does, but she especially does. And she is so enthusiastic.

 

They break into groups and do various activities like counting, cutting, or writing etc.

 

They try to use her communication device to assist when possible. I hope.

 

Every day they send home a sheet that tells me what they worked on that day and other details. It's a great tool considering Ainsley can't really tell me about her days.

The days sure add up. School has been really good for Ainsley. She loves it.

 

One difficulty with having a non-verbal child is knowing what is going on in their head, or what they are capable of. Ainsley is bright in so many ways. Yet there are also times that I ask something simple that I think she knows, that we have worked on a lot, like colors and she will still answer wrong.

 

That's why I was so shocked when in May she came home with an addition worksheet that the aide said she completed 100% accurately and 100% independently. Basically they taught touch counting and Ainsley circled the correct answer to all the problems. It was cut in halves, there were 10 problems.

 

I'm skeptical. But want to believe she is as smart as they think she is. And that there was no guidance. Like saying "Hm." when she was about to circle the wrong answer. She picks up on that. I've seen it over and over when I work with her.

 

It's hard to tell when she is so limited by the physical effects of the Cerebellar Hypoplasia.  

 

And yet she really wants to do everything everyone else does. 

 

And sometimes she catches on to things really quickly. Mostly when you'd rather she doesn't.

 

I've come to learn that only time will tell what she is capable of and what her future holds.

 

So we do our best to provide what she needs in all the different areas she needs help and support.

 

We don't do it perfectly. Ever. It is a struggle to meet everyones needs. In fact most of the time I feel like we are failing her. Other times I think the best thing we can do would be to just love her and let her be who she will be. But she is making little inchstones of progress. So we celebrate those.  

We tried a special pencil (Penagain Twist and Write) but found she prefers the "Big Dippers". Her grasp has improved even if her A still looks like an H.

She tries. And that is what is so awesome about Ainsley. And here is another picture and it shows how much more Ainsley has been using her eyelid "slings" to open her lids. Saturday marked one year post-surgery from her last and final ptosis surgery.  Read more about this here.  We are going to do a lot of writing work this summer.

I loved the art projects that she brought home.

I can see signs of help but I'm still proud of how far she's come.

She did learn to make circles this year.

Some more projects.

She has gotten physically stronger.

 

 

She's been using a walker to get around. Sometimes a gait belt (You can see the nurse had it on her here. It's a new one that quick releases and it's so much easier to use.). Thankfully the places she needs to go are mostly close to each other which makes it possible.

 

Remember this video?

 

 

 She's progressed so much that we've now had it written into her IEP that she will transfer using furniture and the walls to further build her walking skills. This summer she'll be riding her new bike and walking in her walker in our yard. We will also continue the leg stretching and hippotherapy.

She was able to participate in recess. 

 

With help of course, to keep her safe.

 

She participates as best she can in PE, music and library.

 

It's really been a great year for her. And all the kids.

 

I was happy to find out Ainsley will have the same special ed teacher next year and probably the same aide. If we keep the trach, depending on how things play out, we will have the same nurses as well. Continuity is good, in my opinion.

 

Evie is SO excited about getting into the special Arts school. Once again I will have 3 kids in 3 schools and it will be even harder but for now I'm not going to think about it and just enjoy the summer until September comes.

 

Here are the excited kiddos ready to start their summer fun!!!!