Ainsley Using the Gait Trainer

I've got some pictures and video for you of Ainsley using the new gait trainer (walker) that first weekend.

She went from this:


To this by the end:


To see more pictures of her using the gait trainer that day click this entire album link.

Here is video of her in action:


Although whether she likes it or not still depends a lot on her mood.

We got to bring it to therapy on Thursday to have the final adjustment. Ainsley's new nurse Carmela worked an extra day and came with us (I had to pick up Evie from a field trip to take her to her mandatory ballet dress rehearsal). She got to see what Ainsley does at "school". Ainsley enjoyed just standing in it while Triston (the teacher's aid) blew bubbles for her to pop. She tends to be an observer while at school so she didn't move much.

To see more pictures of her using the gait trainer at school click this entire album link.

We've got some practicing to do. But I'm hopefully that this gait trainer is just what she needs and soon she'll be able to use it to get around the house. At almost 3 years old all the crawling is getting hard on her poor bony knees. She's a trooper.

"BIG" Appointments

No surprise. The otolaryngologist who in March wanted to wait 3 more months to see if there was any more improvement before going forward with surgery completely changed his tune. I don't know if he forgot that he said "the ball was in his court" to figure out a plan or what happened. Truly I'm stunned by what was revealed today.

Essentially the reason that we are not hearing much sound from Ainsley while she's wearing her PMV is that her vocal cords are not moving well. She has a lot of scarring. That we knew but had been told they could remove scarring with surgery. Well now he is saying that she has severe scarring (i.e. damage/fixation - medical term ankylosis) to the arytenoids and that is why we aren't hearing much sound and this condition is irreversible. He said he is surprised that her voice is as effected as it is by this scarring and on the other hand surprised that she can tolerate the PMV and cap as well as she does. It must just be borderline that there is just enough room for her to breath but not enough vocal cord movement to talk (with the PMV).

So essentially it seems as though there is no way to give her a voice. The surgical options of a cricoid split or partial cordectomy could leave her airway open and vulnerable to infection especially since she micro-aspirates. We could try that route and potentially get the trach out but it could be at the expense of her lungs or maybe her voice.

So we left the appointment feeling very deflated. Especially because this damage is due to the intubation immediately after her birth and we can't help but feel perhaps it could have been prevented. It sounded as if she may never speak and always need the trach.

Ainsley's speech therapist came with us to this appointment to try to get answers about Ainsley's voice. She brought with her a voice output device that we'll be renting. We tried it out while we waited for her second appointment. She loved it and thought it was a ton of fun. I'd brought her PECS book and she was able to identify every picture card when asked to point to it. Cognitively she's starting to understand a lot more. And just as if to prove him wrong she started vocalizing with some modulation of tone. It's not speech but perhaps her vocal cords are not as fixed as he thinks. Here is some video I took:



And look how happy she is here to have a voice.

So I guess our plan is to work on sign language and use an alternative communication device and most likely keep the trach indefinitely. Unless she decides to prove him wrong. We'll see him again in the fall. We'll keep using the PMV since she seems to be able to tolerate it and it keeps her airway used to being exposed to air. There is no need to push the cap anymore since it's unlikely she'll be able to be decannulated.

The eye appointment was confusing. The ophthalmologist was against the idea of a tarsectomy and tarsal switch surgery to correct Ainsely's ptosis until the end when I showed him a picture of her eyes before and after her last cranial reconstruction surgery. Then he said yes a frontalis sling made sense for her before but not now (pointing to the photo). But she's right there and I pointed to Ainsley. Why the pictures changed his mind at the end I don't know but after 20 minutes of discussion he said that is the way to go 30 seconds after seeing the picture. He did assure us that though the tarsal switch would be irreversible it wouldn't cause damage to her vision although she may sleep with her eyes open. He thinks it would be best to wait until she is at least 4 years of age when that area is mostly full grown. But at least he agreed that is the way to go. He admitted he is conservative. He doesn't even believe in lasik eye surgery so that says a lot. So now we can make the follow-up appointment with the other surgeon and see if he wants to do it this year or push it out.

In late July we should find out if Ainsley needs the hip reconstruction surgery and if so when.

Since there is the potential for her to have 2 surgeries this year it is probably good to leave her airway alone anyway so we don't risk damage from intubation. Then perhaps in the fall we may reevaluate if we are desperate enough for a chance to remove the trach that we'll try questionable airway surgeries. We know we can do the trach thing forever if we need to, but we are disappointed. At least we know Ainsley will be okay no matter what. She is a happy girl and will remain so even if she can never speak and requires a trach to breathe.

New Wheels

Today we got all the kids new "wheels". I was able to schedule a morning appointment at medical supply company to have Ainsley's gait trainer fitted. Luckily Steve had the day off so it was a perfect. I'd been thinking about getting the kids new bikes as a surprise gift for the summer since Evie and Adrian had outgrown their old ones. It occurred to me that it was a perfect opportunity to do it today since I wanted it to be a surprise and it's hard for Steve and I to get out without the other kids. We found two perfect bikes at two different shops and were able to buy them and get home before the kids came home on the school bus. We told them to come out to the patio to see Ainsley's new walker. Surprise! They then spent the next hour or so riding them in the confines of our tiny patio while Ainsley napped before we headed off to the school carnival.


Ainsley didn't have such a great time trying out her new wheels. Here the gait trainer is being adjusted. It's a complex piece of machinery and needed a lot of adjustment. We got the bigger frame because at 37 3/4" she would have outgrown the smaller one too quickly. But she needed the smaller arm troughs. It's a pretty good fit.


Here's she's reluctantly trying it out. We had to rush off to pick up Evie for a doctor appointment so she only tried it for a minute. Later we happened to talk to her therapist because we are having issues getting funding pre-approval for the walker (it should work out soon). She thinks it would be best to let Ainsley warm up to it before trying it again. So we'll try it again later in the weekend. So stay tuned hopefully for some happier pictures and maybe even video.


Here's Evie on her new wheels.


....And Adrian.

I'm hoping that by making it a big deal that everyone got new "wheels" I can trick Ainsley into thinking it's fun to use it. My plan is to take everyone to the school playground to ride their new wheels this summer. Maybe by fall she'll actually be walking.

On the Verge

Of a nervous breakdown?.....maybe. But no really, I think Ainsley is on the verge of something. Tuesday was a record shattering day. She learned to climb stairs, crawl down the ramp, climb over a stack of pillows, get down off a wedge, made a successful choice using the two choice output device, followed the elevator song during therapy with Caroline. Then later that night she managed to crawl by herself up onto Adrian's bed to say goodnight. She's been working on this for a few weeks but this time she was able to do it on her own. Look how happy she is.


Then later that same day during dinner she surprised me by actually drinking close to an ounce of unthickened milk. (I have SimplyThick thickener packets on order.) Usually after one try she would stop since it's hard for her to control thin liquids. This time she kept going. I've long since learned that mealtime is a lot more pleasant for all of us if I don't push her to eat. We provide the opportunity, she is in control of the eating. She loves meal time. She'll actually get upset if we don't give her food, a drink or a spoon. The actual eating progress is slow but at least we have a good foundation of a healthy relationship to food and mealtime so when her body is ready she will do it. You can see she loves to play with it. She did seem to enjoy tasting the spaghetti sauce and even put a noodle in her mouth without gagging. Didn't eat it but small steps, small steps. I'm looking at the prize off in the distance.


And yes she drank but I didn't say it was neat. Look at all that milk she spilled on her chest.

At one point when the kids went upstairs she decided to try to go up herself. I heard her fussing in her quiet Ainsley (no voice) way and came to the rescue. I was thrilled that after climbing the stairs by herself earlier that day that she built up the confidence to try it at home. Obviously this is highly dangerous. Darn it the baby gate has to go back up. Of course I'm actually thrilled at the inconvenience.

Today we had Ainsley's final IFSP at school. She started therapy with them when she was 4 months old. I almost can't believe it's been so long. What a journey. I honestly thought she would progress quicker in the beginning. There were some things she did pretty well early on. But then she had cranial reconstruction surgery, a g-tube, hip surgery and a cast for 5+ months and a fundoplication surgery. Some of these slowed her down. But I've also come to recognize that things are harder for her due to her cerebellum malformation. We set new goals for the coming period and I'm excited to see what she will accomplish in the next 6 months. I've come full circle from fearing that she would only be able to walk with the assistance of a walker to being really excited about the walker. Maybe that says a lot. Especially because in the past few days she's really started to lift her legs up high. She is ready! So today was to be a great day. The day she finally got to use her new walker. Here it is.......

Yeah, it's a box. They forgot to assemble it. Disappointing to say the least. But it's looking like we'll get it tomorrow so cross your fingers.

I was excited to see how she would do with feeding therapy today due to her success last night and it was pretty good. That's the famous HP sauce on her NUK. How she can eat that in the morning I don't know. I think she can't taste much and that's the proof. She is trying more. It really helps to see the other kids eating. Positive peer pressure.

Daddy stayed to watch what Ainsley does as school. It was so nice to have him there. She put this puzzle piece in by herself. Another first!

Lining it up all by herself.

And it's in! Yea!

She loves her "my turn" button. Teacher Holly said not to restrict her use of it since she is learning to use her "voice". She must push it 50 times during music class. I guess it's her turn to disrupt the class. Actually everyone things it's pretty cute and I think a lot of the kids want their own button.

Then she finished off the day doing the elevator song and actually put her arms up and down once. That was quick progress. We'd set a goal of participating in music time on her IFSP just this morning. Hopefully she'll keep it up.

Stay tuned to see what she does next. Personally I have no idea. I've always said she keeps me guessing.

Fundo Intact

Poor sweetie. We took Ainsley in for an upper GI last week. She now gets scared any time we go to radiology and cries and cries even if I distract her with toys she likes. We had this test done at the surgeon's request as a routine part of his 6 months post surgery follow up. He wanted to make sure her fundoplication was intact. I knew it was because otherwise she'd be throwing up. She still gags on occasion and even retches so if the wrap had loosened we would know. It's been almost 8 months and she hasn't vomited once. We are so thankful. For the upper GI they put a barium solution in through the G-tube and then rotate her back and forth on the platform to "see" if there is any "food" coming back up the esophagus. The radiologist said the wrap is tight but not too tight. So I guess that is good information. That means that physically she should be able to get the food down when we progress to the next level with feeding. Probably after the trach comes out some day.

Today we saw the surgeon for the follow up. He said her upper GI was perfect. He was okay with how her scar looked, the raised keloid effect it had is gone now so it looks better but is still wider than the g-tube scar underneath it. He said that can take up to 2 years before it's healed. An open incision surgery takes longer to heal from. Perhaps it may narrow a bit with time. We joked that she wasn't likely to have a future as a stomach model anyway. I asked again and he doesn't think there are better results from doing it as an open procedure vs laproscopically. I had heard of several people on the trach forum whose kids' laproscopic fundos failed and had to be redone with an open procedure so that is why we chose to do it that way. To be sure. Perhaps it depends on the skill of the surgeon and their experience.

Another interesting thing he said is that if you can get food down you can also get food back up and that some kids can vomit even with the fundo. It depends on how hard they retch. It is possible that Ainsley could vomit if she were very ill. So if that happens it doesn't automatically mean that the wrap is "broken". Good to know. We still protect her against anything that will cause her to retch such as feeding when she's not interested or coughing up trach secretions into her mouth.

I thanked the surgeon profusely. The surgery has been the best thing we ever did. It's eliminated a lot of stress for all of us and has helped her airway recover from the stomach acid exposure and is protecting her lungs. She now needs a fraction of the suctioning she used to require. We got a height and weight measure for her: 37 3/4" H (on the short leg) and 31lb 3oz. She is now at a healthy weight because of the surgery (Her dietitian says her growth is perfect, don't change anything, and she doesn't need to come back for 6 months to a year, yea blenderized diet success!). If all continues to go well we will not have to see him again unless she has a problem. I told him I hope we never see him again unless we run into him in the cafeteria. He's a nice doctor who helped Ainsley a lot so it's a bit sad to think we may not ever see him again.

A Day of Firsts

This is the look of victory. We have 2 large flights of stairs in our house and I've been working to teach Ainsley how to climb them. Due to her developmental delays I have had to grab her thighs and lift them up the stairs, position the hands on the next step and crawl her up the stairs. It's hard work, for both of us, but I guess it's finally paid off. At Ainsley's school they have a large ramp for physical therapy think like a gigantic home made slide. We'd tried to use it a few times but it was a bit much for Ainsley. Today after a few weeks break we tried again and I was amazed when I put her into position to climb the stairs together she looked like she would do it on her own. I stood there but didn't touch her and she CRAWLED UP THE STAIRS BY HERSELF! Slow and deliberately of course but by herself!

Then she continued to amaze us by crawling down the ramp without assistance. They had just repaired it the previous week and covered it with marmoleum which is an ideal surface because it's smooth but not too slick. Crawling down hill takes a lot of control and uses a lot more strength. In the past she'd needed a lot of help. Even with the new improved surface it was clear she had progressed massively since our last attempt in therapy.


Here is video of her making it up the final stair. Unfortunately I had to get the camera from the car. By the time I got it this was her 3rd time up and down the ramp so I only caught the end and she'd started to get tired.

As if that wasn't enough, she's also improved at climbing over things. This would be typical for a baby that is crawling but was very difficult for Ainsley. She only this past week has been able to climb over my legs if I'm sitting on the floor. So today she amazed us both by climbing very determinedly up and down "pillow mountain" for the first time. It's hard to gauge the size of these pillows from the pictures. Let me just say they are HUGE. Way to go Ainsley!

Her incentive? A white ball that lights up when you bounce it. But she's not done yet....

We want to teach Ainsley to do things that can further her independence. It is limiting not to be able to go where you want and get down from things. That's what we're working on here. Again another first. She was able in one session to learn how to get down from this wedge! She loves her pound-a-ball toy which was her incentive here. After she'd pound the balls in, Caroline would but her back up on the wedge so she would have to get down again to play.

She loves this thing. It's a great incentive. Shhhh don't tell her that's actually therapy too. It teaches cause and effect, eye hand coordination, and takes a strong grasp and shoulder strength to hammer the balls in.

Here she is doing it on video. You can see how hard she has to work to accomplish this.

But that's not allllll......

She also made massive progress on immitating the motions of up and down. That's an important piece of several of the activities that her class works on in music time every day. Due to her cerebellum issues she's not really able to keep up with some of those activities. So we'd been working on some of the skills used for music time during her one-on-one therapy. She'd been able to do this before but not quite as well. There are two videos here. In the first we are leading the song and you can see how she's pretty slow. Although to her credit she'd done it really well earlier in the session before I'd grabbed the camera. So she's pretty tired by this point since she's been through 2 hours of school which included 1/2 hour each of speech therapy, physical therapy and then an hour of combined therapy with Caroline.

In this video she is leading and after she catches on to the change you can see how quickly she is doing this up and down movement. This is great progress. And the fact that she can do any movements this fast is encouraging.

And earlier in the day she did a great job identifying objects during speech therapy. Her receptive language is improving. Jenny was quite impressed. Last week we started using a communication output device especially during music time since it's loud and being non-verbal you can get overlooked when your primary communication is through gestures. Below is a picture of the device from a few days earlier. Whatever you record into it is what the device will "say" when you push the button. In this scenario it says "my turn" whenever it's pushed, which she LOVES to do. It was so clear today how excited she is about having a voice even if it is electronic.

Truly she is amazing. She works so hard and always with a smile on her face. I am SO PROUD!

Interesting.....

Today I noticed Ainsley scooting herself around the house on her bottom using her arms. Normally I would think this was bad because scooting seems like a step behind crawling. But somehow this seems good like she's looking for alternative modes of transportation. And I think it takes some arm strength and coordinated movement for this to be effective. I'll be curious if she keeps it up or not. Recently she's gotten a bit faster in her crawling and stronger in general so this may be progress.

On the other hand I downsized her trach Saturday to a 3.0 Neo (and so far so good) so maybe she's scooting because she's tired but I've never seen her do it before so I'm going to stick with my first assumption.