The new board is up and running!! Please visit and join it here. If your child has been diagnosed with a laryngeal cleft or is in the process of being worked up for one then this is the place for you!! We also welcome parents of children with dysphagia and aspiration with other causes.
*******THIS BOARD IS NO LONGER UP***********
Once we got the OK from the swallow study that Jennifer didn’t need thickened liquids anymore we decided to have a thickener trashing party!! It is so expensive that I did have a hard time just throwing it away but at the same time after having to use it for about 1 1/2 years it felt good too! Jennifer enjoyed herself too!!
This first pic is her showing the can of thickener:This one is harder to tell what is happening because of the way she did it but it is of her pouring the thickener into the trash:Unfortunately with the delay on the digital camera I didn’t get the next pic of her jumping up and down clapping her hands!!! What a happy moment for us!!
Today was Jennifer’s next appointments with her doctors in Boston. She saw both ENT and GI. The visits went very well.
ENT: He is happy with how well she is doing. Said all looks great and she progressed quite fast after the surgery getting onto the thin liquids. The fact that she does still cough some when drinking is fine and that should slowly go away with more time as her body continues to learn how to swallow with her new anatomy. But no aspiration by swallow study is great news. He doesn’t want to see her for a year unless things change. If at a year things still look so great then he will officially discharge her from his service!!!
GI: We talked about how much Jen is still refluxing and how it’s actually hard to tell. Jen tells me at some point everyday that her tummy hurts. But she says that no matter what is actually bothering her. It could be her big toe but she’ll say it’s her ‘tummy’. And when she coughs (not while drinking) she almost always says it’s ‘on yuckys’ meaning that she refluxed. So we aren’t sure if she still refluxes or not. We are going to try cutting her prevacid to once daily now that the surgery site is all healed up though.
The mild fructose (sugar) intolerance seems to be getting better. Her theory is that she got it from some stomach bug and that she just needed time to heal her intestines. She’ll stay on the probiotic a bit longer until that is completely gone. No plans to retest currently.
Jen is handling soy lethicen and small amounts of soy oil currently. When I tried higher amounts of soy oil she was definitely refluxing so she wants me to stay where we are for 4 more weeks. Then try increasing the amounts of soy oil over 4-6 weeks. If she handles that fine then after that time period add in soy yogurt. If in 4 weeks she does ok on the soy yogurt then add in soy milk. By then it will be time to see her again. We are to NOT add in any dairy before seeing her again. She wants her tolerating soy well before even thinking about any form of dairy.
The only thing she is concerned about in Jennifer is her height. From age birth to 6 months she steadily increased in height to catch up from being born early. Then from 9 months until 18 months she was 50-75% in height on the growth charts. But all the sudden at age 2 she dropped to 15% and then at age 3 to 8%. All this time her weight has been steadily 50%ish. (Well not at birth!! Hee Hee!) But she said it is highly unusual for a child to drop percents in height only. Usually children will drop in weight only or wt and height together but rarely in height alone. For this reason she will probably have her evaluated by an endocrinologist to see if there is an underlying reason for this drop in height.
All in all that’s the visit. 1 year until ENT again and 4-5 mos until GI again. Mostly good news.
Yesterday was Jennifer’s post-op swallow study. It has been almost 3 months since her surgery to fix the laryngeal cleft. Ready for the results………………………..
It was perfect!! For those who would understand this part: there was no penetration either!!! No silent aspiration, no nothing.
She is fixed!! Dr. Rahbar is the BEST doctor in the whole world!!
After such a long journey I never thought we’d see this day. I had such doubts and trials. The decision to do the surgery was not an easy one and the second guessing was huge but in the end it turned out to be the right one after all. Thanks to the Lord!!
The update is coming today as yesterday was quite the adventure!! Her test was at 2pm. We got back there about 2:20 and it literally took about 5 minutes!! A usually swallow study test takes longer but they only needed to see if she was safe for the liquids. When we got done we had to go and see all the ‘sights’ meaning all the things she loves at Boston Children’s. The bubbles, the lobster, the balls and especially the garden. We even brought bird food to feed the birds in the garden this time! We could have rushed out of there and gotten right home but the day before when I told her we were going she asked if there would be any boo boos that day. I told her there wouldn’t be but at the same time I wanted to make it as positive an experience as I could. She’s already quite weary about anyone doing anything around her mouth so I just wanted positive.
By the time we got done with the sights and getting a snack it was 4pm. Had some trouble getting out of the parking garage and I’m pretty sure I got charged twice. Should have realized that was a forbearing of the rest of the trip home! I went the wrong way into a toll booth and ended up on the wrong highway. That added 20 min to the trip. Then I missed my exit to get onto the last highway and this one wasn’t as easily corrected. We ended up having to eat dinner on the road and taking a back road to get to the highway we needed. This second mistake ended up adding 1 1/2 hours to the trip!!!! So a 2 hour trip home ended up taking nearly 4 hours!!!
But in the end not much could burst my bubble! I was riding on cloud 9. I can do that trip in my sleep. I think I was just riding on a natural high and driving along thinking about how I never thought she’d get to this day and then ‘Oh there’s my exit’!!!!
Here is a pic of her getting ready to have the swallow study done:
And another of her out in the garden enjoying the birds:
Tomorrow we go back to Boston to find out if Jennifer’s surgery was a success. She will have her post op swallow study. It will have been almost 3 months since her surgery. (I think it will end up being 2 months and 3 weeks to be exact).
I’m nervously excited about it. She’s been on thin liquids since this post and is doing well. She does still cough but more as a protection than choking like before the surgery. And it is pretty infrequent. I really do think the study will still show some penetration into her windpipe but no real aspiration. I think when the penetration happens is when she coughs. This is a huge step for her as it means that her body has started to recognize that fluids are coming there and triggers her cough reflex. I *think* if this is all that’s happening then they will clear her to stay on thin liquids. As long as there is no aspiration.
Another exciting thing about going tomorrow is that I will get to meet one of my online friends that has a kiddo with aspiration too!! She found me through this blog and we have been emailing for a few months now. Her daughter is today going for a G tube placement and to be scoped to see if she also has a laryngeal cleft. Please say a prayer for them today.
Does the picture say it all? Yesterday was a HUGE day for us!!!
We actually went out to run some quick errands and so I didn’t bring anything for snack or to drink. Jennifer was just whining and whining that she was firsty! So, I stopped and got a juice and put some in a cup with a straw for her and for Sam. I figured I’d pinch the straw so that she would only get a little as that works ok for her. But, then I decided to see what she would do with it on her own. She did wonderful! Drank 6 oz of juice and only coughed once.
Later when we got home we tried again with this juice box. She was so excited! It was for sure a Kodak moment!!! No cough at all this time. She then drank thin oat milk for dinner. Again no cough.
Hopefully there is no silent aspiration accompanying this as that has been her big MO in the past too. We’ll watch close for the low grade fevers I blogged about a week or so ago and go from there. Next swallow study is in about 3 weeks.