Ainsley's First Real Sign

During our many many months of speech therapy and watching Ainsley's every move for signs that she was understanding language I've never been 100% sure I've seen her do a sign in sign language. Ainsley started receiving therapy services when she was 4 months old. We started working on sign right away. At one time there was this all purpose sign she did that looked like hi, all done (with one hand) or milk. I was never sure. Or maybe she was doing three different signs but they all looked the same. She did learned to wave hi and bye but somehow that doesn't seem exactly the same. I'd kind of started to give up. Sometimes I would still sit down and do a Signing Time DVD with her. I still use some signs at home and they use them at school. But I wasn't sure if she was ever going to "get it".

For the past couple months our routine has been that we say goodnight to Evie and Adrian then I put her Ainsley on our bed and we read books. It's actually therapy in a way. But she loves books so she puts up with me bugging her for the most part. I'm trying to teach her body parts and we identify mommy's nose, Ainsley's nose, baby's nose, mommy's arm, Ainsley's arm, baby's arm etc etc. Word recognition of basic words like clothing, furniture, animals, cars, etc. How to nod yes or no using the fantastic book No No Yes Yes and we nod her head with every page. How to point by holding her hand into the right position to point at all the birds in Count the Birdies. She is good about her routines and picks up on them quickly and doesn't like changes too much. She LOVES her reading time.

We've been trying to teach her the sign for book over the last couple nights. Tonight I stood next to the books across the room and looked at her.

Mommy: "What do you want Ainsley?"
Ainsley: Smile.
Mommy: "Is there something over here that you want?"
Ainsley: Smiles and ducks her head like she's being coy.
Mommy: "What is it tell me." I stand around a minute or two.
Mommy: "If there's something you want show me the sign."
Ainsley: Puts her hands together in her lap like a clap clearly trying to immitate the sign for book as best she could with her motor skills.

I was SO excited and made a super big deal about it. Yay!!!!!!!!!!! I am so proud of my baby girl! You should have seen her grinning ear to ear. She knew she'd done something really special.

Two Weeks....But Who's Counting?

Having a child with intense medical issues requires one to look at their own life and expectations in wholly different way. I have learned a bit about the practice of mindfulness and since it does not come naturally to me I have to continually remind myself to remain in the present. It is easy when you have a child with a tracheostomy to get lost in looking forward to the day when you no longer have to be concerned about nursing, medical supplies, speech and eating problems, let alone "trach-snot". I frequently hear my friends on the tracheostomy.com forum talk about the challenge of not living for decannulation and missing life along the way to that eventual destination. It helps so much to know I am not alone in this challenge to stay focused on the here and now while maintaining hope that some day our day will come.

We use the term "guarded hope" to describe the state of mind in which you try to have hope for a brighter future for your child while not setting yourself up for disappointment. So many moms I know expected the trach to be a short term solution only to find the years going by with little change. With each appointment scheduled we carefully hope to hear good news.

We personally are 2 1/2 years into this journey and it is hard sometimes to see so many other kids from the trach forum get their trach out while we try to wait patiently. But there are also many who are waiting just like us and that helps. There are some who have lost their trached child (it can be dangerous to have an artificial airway) and would take the trach forever if they could have their child back and it helps to remember that we are lucky to hold our babies with their trachs. Some know their child will always have their trach (perhaps there is some peace that comes with knowing that) and it helps to know if they can do it we can too if we are given the news that the trach will be permanent. Then there are those whose child got the trach out only to need it put in again at a later date. We all fear that. Most of us try not to even imagine it but sadly it happens somewhat frequently. There are so many possible outcomes. A seasoned trach mom knows to guard her hope and keep it close. The pain of disappointment stings.

So it is with guarded hope that I am awaiting our appointment with Ainsley's otolaryngologist on June 9th, but who's counting?! At her last appointment he was considering some surgical options but wanted to give it just 3 more month to see. It will have been 3 months by the appointment and I am looking forward to hearing what he wants to do. I'm used to hearing lets wait and see so that's what I'm expecting while my heart is secretly hoping for so much more.

What a Wonderful Sound!

Ainsley wore her cap again today for over an hour during "school". The distraction definitely helps. Then later tonight I was amazed at how much sound she was making. From the other room I could hear her giggling with her brother and ran to catch it on video. It turned out that she was actually pretty much plugged up with dry secretions and I didn't know it. Maybe she was still able to get a small amount of air through the trach but mostly she was using her mouth and nose as if she were capped. There really seems to be a difference and much more sound for her than if she is wearing the PMV. Not sure why that would be since it's the exhalation of air through the vocal cords that makes the sound and that is what the PMV does, forces the exhaled air up through airway and out the mouth and nose. I hope she'll continue to do well with the cap so she has more chances to make sound each day. You can hear her voice is still very hoarse from the scar tissue and swelling but it's music to my ears. Even if it's not talking and is just giggling over silliness.

2 Hours Capped! And then nothing.

Ainsley was doing well during speech therapy yesterday so I switched her from her PMV to the cap and she continued to do well. She was making even a bit more sound, which was exciting. So I kept it on until it was time to drive home and she made it 2 hours! Amazing. I think it helped that she was distracted by all the activity then I think she forgot she had it on. I had to remove it once for 30 seconds when she was working really hard in PT and seemed to be working a little hard to breath and once when she coughed but that was it, otherwise for a full 2 hours and she even had some coughing that she was able to recover from without taking the cap off. There has been a few long times like this but on average she is still in the 5-30 minutes range.

Then this evening when I came to relieve the nurse she was making a lot of noise using her PMV. So I tried the cap and she wanted it off right away. She looked alright but I didn't want to push the issue and I knew the second I walked away she'd remove it anyway. Dang that girl keeps me guessing. I don't know why it changes from day to day. But at this point I would just be thrilled if she could just continue to make more sound. I'm sure she will do well capping again another day. And I'm still thrilled at the 2 hours. But the progress will likely be inconsistent.

Every time I hear a bit more sound I hope "This is it. Finally her airway is turning around." but often the increase in sound is followed the next day with things being exactly the same. Every now and then I get to feeling down about the fact that I have a 2 1/2 year old that still can't make much more than a grunt of a sound. Part of it is likely neurological. But, I still think she will do better when the airway issues are resolved and that is why I am eager to get the trach out. Her care has become so much easier in the last 6 months since her fundoplication, and we've become so accustomed to this lifestyle that I know I can keep it up as long as I need to, but for her sake I want it out. So that we know that her airway isn't holding her back.

She has an ENT appointment in 4 weeks. Please hope and pray that somehow things have resolved enough that they can do surgery to remove some of the scar tissue to improve her voice and airway. I'm tired of being excited at the smallest sound and want more for her.

Woohoo! 1 Tbsp Apple Crushers Eaten

Just a quick blog post to say that Ainsley ate about a tablespoon of Apple Crushers sauce. It's a Trader Joe's product that is basically apple sauce with carrots in it, in these weird little squeeze packs. It's got extra vitamin C so it's rather tangy. We didn't have great luck during therapy but tonight she was past due for a feeding so she ate close to 10 small bites. I held the spoon a few inches away and let her set the pace and she leaned forward to get the bites when she was ready. It's been so long since she's willingly opened her mouth for anything. And......she was capped. The best thing....it's orange so it's super easy to see if she's aspirating and I'm thrilled to say there was no trace of color in her secretions.

She also tasted the hamburger, tomato and chips. (We barbecued since we had nice weather.) Just licks but still....really great since she got crumbs into her mouth and didn't gag. It SO helps to be hungry.

Call From Dr. Cotton's Office Today

I've been waiting to hear from Dr. Cotton. He is a very well respected airway surgeon that many on the tracheostomy.com forum travel to see from all over the world. We had a full work up in Cincinnati in April 2008 and I followed up after our last laryngoscopy last month by sending him a summary of how Ainsley has done over the last year as well as photos from the last laryngoscopy. As her patient I think it's good for them to have that information and I was curious if he would agree with our local ENT about a course of treatment.

They said that Ainsley is a highly complex case and it's invaluable to have a good otolaryngologist locally that can see Ainsley in clinic and not just for surgeries. They said they have the highest respect for Dr. Inglis as a surgeon and surprised me by saying there are some airway surgeries Dr. Inglis does that Dr. Cotton does not. The difficulty with Ainsley is that the problem and solutions are not clear. I am relieved to know there is no reason to travel if Ainsley does need surgery for her airway. We are looking forward to the results of her next scope in June to find out where we are headed on this journey.

Capping Videos

I've been meaning to post a video of Ainsley wearing the cap that we got back in late January. The thing is that how she fares on it is rather inconsistent so I haven't been sure whether to post video of her doing well or struggling, so I decided to post a sampling so people can get an idea of the trials of capping. Occasionally she seems to hardly notice when I put it on and will last for up to an hour, other times she only lasts a few seconds and then there are the times that you get mixed signals, which I happened to catch on video last month. It happened on this day you see it all. I'm hoping my friends from the trach forum will give their impression of how she is doing (clearly she's struggling when she is crying), especially those whose kids did a capping trial before decannulation. Her local ENT would like to see Ainsley work up to wearing this cap most of the day (as tolerated) before attempting decannulation*. Most of the time I don't feel great about her wearing it and I get nervous to leave her alone (within proximity/earshot) with it on for fear she'll decannulate herself trying to pull it off. Please comment and tell me your thoughts about how she is doing on the cap.

(*I also want to point out for family that may get very excited to see this video, that even though she can tolerate a cap for varying lengths of time that is not the same as taking the trach out because her airway can collapse. When we take Ainsley's trach out to replace it with a new one (a routine part of tracheostomy care) she starts to turn dusky blue within about 30 seconds max. The road to decannulation can be bumpy with lots of twists and turns.)