May 28, 2012

Happiness Week 21

Wow, week 21 the year is nearly half over! Where does the time go? Having a special child just means there is that much less time to do the regular things that people do that keep them busy, so I always feel several steps behind. After spending nearly an entire week in Cincinnati(and countless hours planning the trip) I have to wonder if I took all the time I spend scheduling and attending doctor appointments and surgeries, therapy, medical research, suctioning or tube feeding, diapering, positioning, being an advocate, providing or receiving support through the forum, ordering/unpacking/cleaning medical equipment and supplies, coordinating nurse schedules, working on skills like eating/walking/talking, programming AAC devices etc. etc. and even blogging about all this stuff, how many hours that would add up to over the past 5 years? Months? It could be as much as an entire year. It can be draining even if it is all necessary and beneficial.  That's why it's so important to look for the happiness. No matter what your circumstances, the happiness is there, you just have to look for it.

Daily Happiness Photos - Week 21

05/21 Meeting Trach Friends
During our trip to Cincinnati we got to meet some of the friends who we've met in Holland. We understand and support each other and that is invaluable. It's amazing when you meet someone face-to-face for the first time and feel like they are old friends.

05/22 Chipmunks
While trying to make our way to the hospital a lady on the street said to go up the street and to the door past the chipmunks. ??? Okay. We really didn't know what that meant and boy were we surprised to find life-sized statues of the characters from Alvin and the Chipmunks. Even though Ainsley was afraid of them I was happy because I knew my other kids would love seeing pictures of these. One day Ainsley will enjoy seeing the pictures and hearing about how she was afraid of them. It will make a medical trip seem like it was a little more fun. I love how these Children's Hospitals try to make the hospital a fun place for kids. As a parent I find it helps distract me from the sorrow that is everywhere there.

05/23 Being Done
...For now. Having any sort of surgery or procedure planned means that it is hard to just "live your life". You are looking forward to "the day" kind of like the weeks before Christmas or the last day of school. You are on a "countdown". At the point this picture was taken were past the big stuff: the FEES, the chest CT and pulmonary appointment, the triple scope and meeting with all the doctors. It was a relief to be done, even though the news wasn't good and we did still have to stay overnight in the hospital for the impedance probe. I've spent much of the past 5 years on one countdown or another. Every time I'm glad to move on, always hoping it will get us one step closer to "done".

05/24 Zoos
I love animals. I kind of hate that some have to spend their lives in "enclosures" for our entertainment. But I love that zoos exist and give us the opportunity to safely see and appreciate animals with our children. I was glad to be able to take Ainsley someplace fun after all she'd been through this week.

05/25 Home
Traveling with a medically fragile child is tiring. I am so happy to be home. It is where I am happiest.

05/26 Accessibility
This walker will give Ainsley the support she needs to venture out into the world. It wasn't long ago she relied on the sling, now she's sturdy enough to be safe without it. Today she used her walker to go OUTSIDE. She navigated by herself onto the grass and up the hill to watch Evie paint. Then she navigated back down and onto the patio, across the bumpy bit that isn't paved, over the threshold and into the house, and turned around and DID IT AGAIN. BY HERSELF. This is why we bought this house. Accessibility.

05/27 Healthy Treats
Do your kids beg for dessert? I don't like my kids to get too many sweets but if they had their way they'd have dessert everyday. I found key lime yogurt at the grocery store and a new healthy dessert idea was born. "Pie in a Cup". It's fast and it's healthy. I think we are going to be having a lot of these around here.

Ainsley starts outside OT & PT this week. We have an appointment with her local ENT. I will be programming her new AAC device which I am SO excited about! I'll be thinking a lot about Ainsley's upcoming Frontalis Sling surgery, which is scheduled for 6/15. Steve will be settling into his new job in UI for the Halo game where they are expecting him to work 60 hours a week now that I'm home. I hope you have a good week whatever you are doing.

To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.


  1. I am so glad to hear about you getting back from Cincinatti safely. I bet you guys are very happy to be done with tests for a while. I really loved how you guys met up with people from the Trach Forum, I think that is awesome! It's really nice to have people that have some of the same problems as you. Wow 21 weeks! Can you believe this year went by so quick? I can't. I hope you guys have an awesome week, and great job Ainsley for navigating around in your walker over grass and pavement so well! I am so proud of you, Ainsley! You go girl!
    From, Abby

  2. I'm glad you guys got back safe. Your project inspires me. I Have actually thought about your project a few times if I'm too focused on the negatives. We have had new diagnosis thrown around this year and I tend to dwell. But I think about your happiness project and then try to find a positive.
    Inreallyndont know how younsleepmthough ;)

    Karen (Natalie's mom from trach board)

  3. I wish I still had your phone number so we could chat! I've got some thoughts on your CCHMC visit.

    1. Supraglottic swelling: Put her on an antihistamine (like Allegra or Zyrtec) and a nasal steroid spray (like Veramyst that doesn't require her to sniff to get it in her nose). Even if she doesn't have "allergies" it will help with the reactive airway.

    2. Pooling secretions: I think this is related to low tone/cerebellar differences. The uncoordinated swallow caused by low tone could cause the secretions to pool.

    3. Non acidic reflux: Put her on Prevacid or another reflux med like Protonix. Sometimes it takes a few different meds to find the right one or combination of meds.

    N and Ainsley are very similar in one area--reactive airway. Honestly, the doctors don't know what to do about the supraglottic edema. I had to suggest the antihistamine and steroid nasal spray combo, and we had to do it every day for 6+ months before we noticed anything. The only reason he is decannulated is because he is on those meds 365 days a year. His airway is still reactive and I still worry:)

    Your variables are reflux and low tone, I think. Though the reflux can be controlled with the right med or combo of meds, the meds must be taken every day long term. N never had reflux per say, but we were on those meds every day from 6 months old until last fall when he turned 6. The low tone is the biggie, but who knows where that one will go. If her airway is more "under control" she might be able to retrain her brain/muscles to protect it better. N doesn't have low tone, but he is missing some important laryngeal structures. His brain re-wired itself to protect his swallow. I think this could happen with Ainsley. She just needs the time to grow--and have her airway status made more stable.

    That's just my two cents:) I'm glad you are back safely. She looks great, by the way--so big and so cute!!