I know so many amazing moms! I'd like to wish you all a Happy Mother's Day even if it is a day late. However you spent your time I hope it was exactly what you needed.
We are less than a week away from leaving for Cincinnati to see the infamous Dr. Cotton. His aero-digestive clinic is regarded to be (one of) the best in the world for pediatrics. If you have a child with a complex airway this is reputedly the place to go. What is incredible about this doctor is that he has a passion for what he does. His e-mail address is out there for anyone in the world to contact him. And he even responds. One thing I have learned is that doctors are humans not Gods so I'm not expecting him to work a miracle. They have some advanced testing that isn't available here in Seattle, like the impedance probe test for reflux and the FEES to view her swallow. But really what we are after is the human element. The advice of a surgeon who's probably seen more complex airways than anyone else. If anyone is going to have a hunch about whether or not surgery would do the trick to get Ainsley's trach out I think he'll be the one. Then together with our local ENT (who has been indecisive about surgery) we will formulate a plan, which could include surgery locally or in Cincinnati or it might involve acceptance of the trach as a permanent part of our lives. I am really excited about this trip and am hopeful that at last we will have some answers
The last time we went to see Dr. Cotton (in 2008) Ainsley's airway was so badly swollen from reflux that he couldn't see too much. The trip was beneficial though because their impedance probe test detected silent reflux that our local PH probe tests didn't. Ultimately that lead to her fundoplication surgery, which saved her lungs from bronchiectasis(potentially permanent lung damage) caused by silent aspiration of stomach content, which also went undetected by the Seattle doctors, and this surgery resolved the life-threatening airway swelling to the point that she was able to then tolerate a speaking valve and even a cap. Though I have to give credit where credit is due, the Cincinnati team did not recommend the fundoplication because kids often have problems with them. That was the Seattle pulmonologist we brought on as a result of the 2008 trip. It worked and saved our lives.
I will of course be posting many updates during the trip, so stay tuned for that next week.
Daily Happiness Photos - Week 19
05/07 Blogging Outside
The sun came out and it was warm enough to sit outside to do my Monday blog post and it was glorious!
05/08 Elephun Fun
May has been my bucket list month. I don't know about you but I always have a ton of little things that we can't seem to get to that tickle at the back of my mind constantly. We've been checking some of these off the list. I'm hoping to ease some of the clutter in my mind. Our Elephun game has been on the shop bench for over a year. The screws for the battery compartment were stripped so I couldn't get the door off. I got Steve to fix it and the kids had such a blast jumping around trying to catch butterflies. I highly recommend this game for young kids!
The SureStep SMO's came in. I was SO HAPPY to pick them up! We even found the perfect pair of shoes (they recommend a round toed sneaker like this). Ainsley can only wear them a couple times a day for a couple hours at a time for the first week. So I will write a whole post on them after the first week when I have a better idea of how well they work for her.
05/10 Hot Tubbing
We've been working hard in the yard and the garage. Steve is making progress putting up insulation in the play house. So we deserved a dip in the hot tub and decided to take the whole family in. After years of wanting a hot tub and not having one we need to take advantage of it more often. Even Ainsley loves it. She wears her cap and we take great care to keep her neck out of the water.
05/11 Sweet Smelling Flowers
When I talk about our yard I should make it clear that we are not responsible for its beauty. That would be the genius at Sundance Landscaping. We simply bought the house and are attempting to maintain what was done many years ago. John did come to the house and walked through the yard with us. I believe he said that this is some type of deciduous Russian rhododendron but I don't know the name. The thing is it smells so sweet and fragrant like a lily or honeysuckle. We have about 5 of these scattered throughout the yard and the scent is lovely.
I brought out the big bubbles for Adrian because he was bored. I got great shots of him making HUGE bubbles. But ultimately this photo wins out because Ainsley was able to blow bubbles HERSELF for the first time using the bubble pipe and she was so proud!
05/13 Breakfast Outside
I love breakfast. It was so nice to start off Mother's Day eating breakfast outside on the patio on a beautiful day, since those are rare in May in the Seattle area.
Have a great week everyone! We are making our final travel plans. Ainsley caught a virus from school so now we are keeping her away from that place until the trip to make sure she doesn't pick up something else. We also get to pick up her Nova 7 this week!