Nov 28, 2008


All my children are amazing. Each in their very own special way. Evie, she is an artist and a busy body. Always thinking, planning, doing something. Often involving excessive consumption of art supplies. But this Thanksgiving I was so incredibly proud of the way she put her talents to use. Her teacher had all the kids make a "Thankful Bowl" out of a tissue paper mache technique. It turned out quite beautiful in shades of red and orange. We took it with us to Thanksgiving dinner at my birth mom's house. We cut strips of colored paper and Evie went around and asked each person to write what they were thankful for and place it in the bowl. No small task since there were about 20 people there. Then she read them to the group before dinner as an alternative to saying grace which we never do in our non-religious group. She did a great job being brave and standing up to read them in front of a large crowd. I helped when she didn't recognize a word or couldn't read the handwriting. Everyone seemed to enjoy it and even get a good laugh out of it when one was read poking fun between cousins or when Adrian's was read saying he was thankful for his Pokemon book. It was a great idea and I think I might make that a family tradition.

There were many things I was thankful for this year but was only able to write 3 before Evie cut me off, saying that was enough, which I thought was funny. Apparently there is a limit on thankfulness. In particular I said I was thankful for three beautiful healthy children. I'm sure as my scroll was read there were some in the group who would question the honesty of that. But it is true. As far as children with major medical issues go Ainsley is pretty healthy. I am thankful that her airway condition hasn't worsened, caused her to need a ventilator and that she has not had frequent respiratory infections. In fact things have gotten much better for Ainsley over the past year.

Last Thanksgiving she'd just had double hip surgery and been placed into a spica cast which she wore for 3 months. She then wore a restrictive brace for 5 more months. Thankfully she is an easy going girl who handled the restriction with little frustration. Looking back I can hardly believe we made it through that time. She needed so much suctioning of the trach and had the vomiting issue on top of it. Positioning her was such a challenge. The special diapering and concerns about soiling the cast.....THAT is an amazing change, to be done with hip issues, what a blessing. Sure, we're still working on physical therapy but for the most part, we're done.

As a result of correcting her hips she was eventually able to learn to crawl in September! What an incredible change that has been! It is so truly beautiful and inspiring to see her work so hard to follow her brother and sister around the house. We are still in awe that she met this goal! When we placed in on her IFSP in June we really thought it might never happen. Little did we know she would amaze us by starting to crawl just 3 months later!

The trach and it's care, the cranial surgeries, the feeding issues, the eye issues, the concern about her brain development, the hip issues, the therapy it's all been hard, but the vomiting has been one of the hardest things to deal with. Every time it happened we knew it was hurting her airway (and that she'd never get the trach out so long as she kept vomiting), we were concerned she would aspirate the vomit and get pneumonia or lung damage, we had messes and laundry up the kazoo, and the frustration of knowing that she was losing calories and not maintaining an ideal weight plus the guilt when doctors and therapists would look to us as if we were doing something wrong. We made the decision to do a Nissen Fundoplication in October and have been very happy with the results (see prior posts) so far and are thrilled to see Ainsley have more energy and gain weight. She still has issues with coughing up secretions and it causing gagging and retching but at least the stomach contents are staying put in the stomach where they belong. We are having more challenges with oral feeding but I am hopeful that will come in time.

Many people give thanks at Thanksgiving for their health. Often people in hard times say "Well at least I still have my health, right?" as a sort of consolation. Few people truly understand what a gift our health really is. Having Ainsley, I KNOW that we are lucky that she is as healthy as she is and I KNOW I am blessed that my other two children have perfect health. Appreciate your own health and be truly thankful.

Nov 21, 2008

One Month Post Nissen- All Is Going Well!

Today it has officially been one month since Ainsley's Nissen Fundoplication and she is still vomit free! We followed up with the surgeon Wednesday and have been given the okay to transition back to regular feedings over a 2-4 week period. Feeding her 50ml of formula every single hour 24 hours a day has gotten old! Still, we want to take it slow so we don't over stress her stomach and cause retching that might risk breaking the wrap. We'll gradually add purees again (hopefully that will eliminate the stinky poo problem) and spread the daytime feedings over longer periods, increasing the size of the feeding and gradually reducing the night time drip of formula until we no longer have to use the feeding pump at night.

We will not know how successful the surgery was until she is on her normal feeding regimen. I feel pretty good about things though and hope that she will still not vomit or reflux even when she is getting her normal 8oz size feedings 4 times a day. And that it won't cause retching when we do. We have seen some retching and it's hard to watch. We don't want her to do too much of that for fear it could loosen the wrap. But the times that she does retch I believe are appropriate and she would have vomited without the fundo.

Amazingly Ainsley has gained almost 3 pounds since the surgery!!! She now has a nice little amount of chub on her tummy and legs. There is now no doubt the degree to which this vomiting issue or reflux was causing problems for her, especially in regard to her weight. She has been considered underweight even though she was on a whopping 1200-1300 calories a day. She's gained so well on 1200 a day since her surgery that the dietician has approved for us to reduce her calories to 1000 per day. She seems to have more energy and is getting stronger, even starting to pull herself up in the kneeling position. I suppose because she's retaining more of her nutrition and she just feels better.

And best yet. We had an appointment with her otolaryngologist(airway doc)on the 10th. Less than 3 weeks post surgery the scope showed a decrease in her airway swelling. We had noticed almost within a week of the surgery that she started making more sound and was better able to tolerate her PMV (speaking valve). She wants Ainsley to be able to wear her PMV all the time consistantly for 3-6 months even when sick,except while sleeping. I'm not sure if she will be able to with the trach cannula taking up some of her airway, and the granuloma that she has, as well. Sadly we discovered that her otolaryngologist is moving to the East coast at the end of November. So it was fortunate we got to see her one last time and say goodbye. Dr. Chen saw Ainsley's airway a few days after her birth when there wasn't any significant swelling, she performed Ainsley's tracheotomy, performed several laryngoscopies/bronchoscopies as well as scoped her multiple times in the office. As one of her tough airway patients she would like to know what caused Ainsley's airway swelling and suspected reflux played a role. We hope she will keep in contact through Ainsley's blog. We have a good replacement doctor taking over. The plan is to see him in late January. Here's a video from the scope.

On the down-side the reduction in swelling opens up the airway for aspiration and potentially lung damage from that. So we'll be watching her carefully and hoping for no increase in respiratory infections. I thought she'd perhaps start eating but she seems even less interested than in the past. Maybe with time once she's better able to protect her airway.

Unfortunately Ainsley caught a cold and developed some nasty granulation tissue on her trach stoma last week and that was causing her some serious difficulty for awhile.

We used Tobridex drops and switched to a Neo length trach temporarily and that seemed to help. She's finally smiling again and getting back to her normal activity level. It would be nice to be able to take her to therapy/school. Especially since she's doing so well with her PMV, even the unmodified one. I'm hoping we'll be able to get back to using it as much of the day as possible. It's been really great that she's been able to tolerate it so much better. We've even been able to hear her laugh a little which was beautiful! I tried to shoot a little video. It's not great, but gives you an idea of how she's doing with her PMV. Still not very loud or clear but better. Small steps.