A dear friend from the trach forum contacted me and shared with me that their doctors (including Dr. Cotton) didn't think her son would ever speak and maybe never get his trach out because he was born without vocal cords and that area was pinched nearly shut, a very rare birth defect. In addition he had a reactive airway. Her persistence and willingness to do whatever it took(combined with the doctors' expertise) got them there and today he is living trach free and talking up a storm. Of course even when two kids share some similarities they are different cases. It does show, however, that doctors don't always have the answers and sometimes things turn out better than they expect. I am a practical person. I like truth. Give me real hope over false hope, I have no use for that. How can you tell the difference? Well that is the tricky bit now isn't it?! I wouldn't say I have hope so much as I am willing to take steps as if I do.
Where we are at right now is waiting for the Cincinnati ENT team to call with their final recommendations. We rescheduled our appointment with our local ENT for 6/8. He was nice enough to agree to see us on a day he doesn't normally see patients. He's otherwise booked out for months. Doctor Cotton mentioned a T&A surgery of not just the normal tonsils/adenoids, but I believe the lingual tonsils as well. I think that is the first thing to pursue, and then we'll be back to our favorite game of waiting. It should help her airway, just probably not enough to eliminate the need for a trach. If nothing else perhaps it would help her swallow, which really is the main reason the surgeons don't want to do surgery, because she could aspirate and that would be harmful to her lungs. But it may not. One step at a time.
The GI team from Cincinnati called. The impedance probe reports came in and Ainsley does not have reflux. Not only was it not acidic, she only had 5 recorded events and NONE of them went up to the airway. That means her Nissen Fundoplication is intact, just like the endoscopy seemed to show. That is good but also bad because it means remaining airway swelling is likely NOT from reflux. That leaves us still wondering about the cause.
In addition to sorting out her airway situation we have pre-op appointments for her eyelid surgery this week. I am nervous. In addition to the medical stuff it is the end of baseball season for Adrian. Evie has her ballet recital, and she is performing a play with her Seattle friends. In addition we have several play dates and a birthday party or two. Whatever you have going on this week, I hope it's more relaxing than my week will be.
Daily Happiness Photos - Week 22
05/28 Having A Swing Set
Yesterday we were in Seattle at a friend's house, an old charmer with a beautiful garden full of fruits, veggies and herbs. It made me a bit homesick for our old house. As beautiful as our house is I LOVE old houses. One thing that we didn't have at our old old house is a swing set. Most city yards don't. So rather than feel sad about what we've given up I am choosing to focus on what we've gained. I am so grateful that my kids have a swing set that they can use any time.
05/29 Deleted E-mail
It's not fun but has to be done, going through and deleting e-mail. Yep, you see that right. I was able to delete 14, 317 e-mails today. It took all day to sort out the ones I didn't want and restructure my folders. Hopefully my new system will help so I can be better at seeing the important e-mails and not "losing them". May was my "This and That" month. Tackling some of the items on the to-do list that tickle and irritate the mind because they never get done.
05/30 A Good Dad and Husband
I am really lucky to have a good husband and father for my children. He's not perfect but neither am I. Raising a special needs child with medical issues is tough. It's amazing we've held things together as long as we have, and we aren't just surviving we are thriving. My husband works hard. He helps out. He makes time for our kids. We are lucky.
05/31 Evie Not Being Too Old For Bath Crayons
The years pass too quickly. Evie is on the verge of turning into a young woman and that makes us a little sad at times. Of course she'll always be my baby. Today she wanted to take a bubble bath and draw with bath crayons. I have great pictures of her standing in the tub having written her name in bath crayons when she was like three. Today I loved that she's not yet too old for bath crayons.....even if she was listening to Taylor Swift on her IPodTouch at the time. Of course her drawing made me teary-eyed. It was a moment I won't forget.
06/01 Interesting School Programs
The kids have a watershed near their school and some amazing parents have worked hard to create a whole learning program around it. Each year the kids learn something different. I got to go along with Adrian's 3rd grade class into the woods to explore the watershed. We attempted to find macroinvertebrates i.e. buggies but didn't (that was okay with me). Instead we caught a couple worms in our net and the boys found a couple small salmon. I love any type of hands on learning that makes science interesting especially when it teaches about the importance of our environment.
06/02 Delivering the Impossible
Evie is doing another play with her friends from Seattle. Last week we were given the task of building a boat prop out of cardboard. In my spare time. Somehow I delivered the impossible and here it is. Actually it turned out better than I expected and wasn't as hard to do as I thought. It's just two simple boat shapes sewed together with twine.
Around here sometimes creativity gets the best of us and things turn goofy. Just in case you get hungry there is a hidden snack compartment in this hat. The straws puff up the balloons.