Jul 13, 2011

ENT Follow Up, New Wheelchair & Mid-Summer Update

Yesterday's ENT appointment couldn't have gone better, really. The doc scoped Ainsley and we got the best view we've had to date. In part I was able to reason with Ainsley a bit more than in the past and she remained more calm so things weren't as wet. But it also looked like there was less redness in the upper airway, probably from the Prevacid changes. She remained capped for the entire appointment. He asked about sleeping and I told him that she still has difficulty sleeping with the cap on which is currently the biggest issue for her.

Since he got a better look he felt he could fairly safely rule out obstruction through the nasal palate area due to craniofacial issues, or in the area in the back of the tongue and he believes the area of difficulty is in the area though the vocal cords, which though they open, don't open real far. So he wants to do a laryngoscopy under anesthesia to evaluate her airway again and make sure the granuloma he removed (caused by the trach) hasn't grown back. He again talked about the options of a Cricoid Split surgery or cutting away part of the vocal cords.  We were able to get in on July 25th which is great since it's still summer so if he does decide that she should have surgery it might be possible to get it scheduled prior to the start of school in September, after which she is likely to get sick and cause the surgery to be rescheduled. Here is an image from the video of her airway with the cords open so you can see.

I took the trach out at the end of the visit so he could see how she did, while we signed consent forms. I was glad the ENT got to see how well she does for himself. For awhile we've been stuck at this point of her having a borderline airway just a bit on the small side. Well enough to do okay during the day (unless she cries or get exerted) but too small to breathe comfortably during sleep. I've always suspected she would need surgery in the end. But I also know airway surgeries fail. I would hate to put her through that and have it not work but we won't know unless we try it. Waiting for things to fix themselves also may not work. There will be more tough decisions ahead. Please think good thoughts for us for the 25th.


We finally got our Convaid Rodeo push style wheelchair last week. WooHoo, it fits her!  It was a real challenge to find the right chair for Ainsley's body type (tall, thin with a long torso but not a deep seat) and it is adjustable for growth. I didn't want to have insurance buy a chair this expensive unless it could last a few years. We wanted something that reclines so we can lay her back if she falls asleep, but in the end we got tilt instead so the chair is "transport approved" (is crash tested and has tie downs) and she can use to ride the bus to school. We'd been using the 7lb MacLaren Volo which is meant for age 3 and under. (It looks bigger because it's closer in the picture.) Now I will be hefting a 28lb + chair out of the car, but that's unavoidable. At least she seems to like it and be comfortable. I started shopping for a chair in September and we "ordered it" in December.  It was ordered without the tie downs, then had to go back, thus required reauthorization from insurance and Medicaid and was sitting at the DME since May. It is SUCH a relief to have this DONE. Although I just opened a letter from DDD/Medicaid saying certain parts were denied though the DME told me they got approval and obviously released the chair to us. So it's going to require some follow-up. Annoying. But at least we have possession of the chair!

Sunday Evie left for sleepaway horse camp. She was so cute in her cowboy boots and horse shirt. It's all she's been able to think about for weeks. She went with two of her best friends from Seattle and she was SO SO excited, had been looking forward to the day since we registered in January.  They sleep in covered wagons. I was a wee bit nervous about sending her to ride horses since her only experience on a horse is the pony rides at the fairs. Friday we go pick her up and see the "horse show". I can't wait to see her ride! I hope she has the time of her life! And doesn't come back grumpy, missing her friends! 

I'm trying to spoil Adrian a little since he's bored at home while she's gone. He turns 8 on Monday!  It feels like yesterday that HE was my baby. The years since Ainsley's birth have FLOWN by and she is not too far from turning 5! Anyway he's having a sleepover "campout" birthday party with a handful of kids in the backyard Saturday.

I LOVE this boy! (And my girls too of course.)

Since we just bought a house we have no exotic travel plans this summer. My hope was to do a lot of backyard play and entertaining. The weather here in Western Washington has been crummy, no sun and actually a bit cold at times. With all that we have going on I'm afraid summer is going to be over before it evens starts. So if you are lucky enough to be in a part of the world that is sunny and warm right now...ENJOY!


  1. I am so glad the ENT appointment went so well! That all sounds so promising! And it looks like the Prevacid changes really made a big difference - and quickly, too! I will definitely keep my fingers crossed for the 25th!

    We are looking at strollers, too. We just have a Chicco or something and Harlie has long since outgrown that. Not sure what we're going to do. It is really confusing! It looks like all your time and effort has paid off, though. The Convaid looks great and Ainsley looks very comfortable in it. I'm glad you finally got it!

  2. yeah!!!! the chair looks perfect!!!She looks happy too!! all your children are so beautiful!!! Good genes huh:) What good news!! hoping that the 25th birngs more and we will be keeping you in our thoughts and prayers! sending love and hoping you enjoy the sun this weekend brings! Wyndi

  3. Dear Susan,

    Wendie touched base and connected me with your daughter's beautiful Blog - Looks like you have been understately quite busy - viewing the photos I can tell you are a wonderful Mother and your family is Beautiful ! I would love to reconnect with you.

    I hope as I write this you are doing well. I would have loved to see you at our previous reunions- but as you know - I steered clear.

    I wish you the Absolute Best.

    Much Love,


  4. Oh.... This is really at-least one time readable post for every one. God bless. Your ENT matter description makes me crying.

    Wheelchair tie downs