Category Archives: tests

Latest ENT/GI visits

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.


Surgery was a success……..she passed!!!!

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………………………..

NO ASPIRATION!!!!!!!!!!!!!!!

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 is the day

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.

My daughter is my hero and some thickener updates

The title says it all.  Jennifer is my hero in so many ways.  She has been through so much in her short life but she just rolls with the punches and moves on.  Now, don’t get me wrong, she isn’t all peaches and cream or anything.  She is a typical toddler/almost preschooler.  She’s stubborn and boy does she have a temper!!!  But despite all that, at the same time she just blows me away.

When we first found out at 2 that she was aspirating and that she had to go on nectar thick liquids she didn’t bat an eyelash.  I tried the stuff and man is it nasty.  Then a few months after she turned 2 we found out about the milk and soy intolerance and had to radically change her diet.  Her past favorites, like goldfish crackers for example, were no longer allowed.  She only half batted an eyelash at that one.  Then we had to go up to honey consistency on her liquids and she gave us trouble at first but then after a week got used to it and acted like it was no big deal.  Have you ever tried to drink something as thick as honey???  Can you even consider something as thick as honey still a liquid beverage???

We won’t even talk about her multiple hospitalizations, procedures and recent surgery here as they are in other posts except to say that she has always handled them like a champ.  Including going back to her recent surgery in my arms while singing to the anesthesiologist!!!

Her most recent intolerance is to fructose, AKA sugar, resulting in another diet change.  At first it was easily managed by just taking juice out of her diet (yup, you guessed it, didn’t bat an eyelash!!) but she then started having symptoms again.  So, onto another source of sugar out of her diet…….fruit snacks.  This is a kid who begs daily for some fruit snacks.  We actually used 1 fruit snack (not 1 package) for her for potty training too as she couldn’t have the mini m n m’s.  She’s been potty trained for about 8 months now but still begs for that fruit snack every time she pees!!  You can imagine how I thought it would go when I told her no more fruit snacks.  But the little trooper she is, I just told her that they were hurting her tummy now and that she shouldn’t have them anymore and she proudly announced to Daddy that she was having no more fruit snacks “because they hurt my tummy”!!!!  She really is my hero.  She’s just amazing.  No tears, no fuss, no nothing. 

And on the occasion that she does give me a hard time about something she isn’t allowed to have then I just ask her “what will happen if you eat that??” and she will tell me “it will hurt my tummy” so then I ask her “should you have it then?” and she’ll say “No” and move on.

On to the thickener updates…..I make her 24oz of VERY watered down juice at a time (20oz water to 4oz juice) and use 8 tbsps of thickener in it to make it honey consistency.  Just after her surgery we had to go up to 9 tbsps as she was coughing a bit due to the changes in her throat anatomy.  But after a week we were able to go back to the 8.  After unsuccessfully trying to go to 7 I went to 7 tbsp + 1/2 tsp and she did that successfully for 5 days.  Yesterday we moved down to just 7 tbsp and she did great with it. 

We are supposed to thin a bit more each 4-5 days until we get to either her next swallow study which is Oct 9 or until we get to regular thin liquids and then have the swallow study.  So far, so good.  Dr. Rahbar did say she’d have some trouble here and there (like we did at first try when I tried to thin too much) but the hope is to be on regular liquids by the swallow study.  70% of kids who have the cleft repair surgery are.  I’m praying we are in that 70%!!

Samuel’s echocardiogram

Samuel has a heart defect called a subaortic membrane or subaortic stenosis.  It was discovered just before his second birthday.  It is pretty rare and is one of the more mild defects to have.  Unfortunately it is a huge grey area though as he could outgrow it or he could need surgery to have it repaired/removed.  The reason they don’t just generally remove the extra piece of tissue is that it tends to grow back!!

In this defect there is extra tissue just below the aortic valve in the left ventricle that causes narrowing or obstruction (hence stenosis) that the heart must overcome to pump blood into the body.  This makes the heart work harder than it should have to.  It is detected by hearing a murmur as the blood travels over the stenotic area into the aorta.

So for now it is followed yearly by a pediatric cardiologist by echocardiogram and office visit.  He had his echo last week.  I really thought it would be a horrible experience since it takes about 40 minutes and he is a kid who just cannot hold himself still!!  But he did beautifully!  Held still the entire time and was just starting to get wiggly when it was ending.

His appt with the cardiologist is August 20th.

Here he is having it done:

and here is the actual picture of his heart:

Some updates

I haven’t updated this blog in awhile. So, here is the latest: We are gearing up for Jen’s surgery. Prior to that we were dealing with month long loose stools on her. It was torture for her and us. It started out being 1-2 times a week and then at it’s peak it was daily. It eventually got to the point where she didn’t have a normal stool in almost a month. I talked to her GI about it and we did some stool testing and started her on a probiotic. Jen thought the stool testing was pretty cool since she got to poop in a special “hat” that sat in the toilet and then Mom got to put it into containers!! The things that amaze these kids!!
We just had another visit to Boston Children’s. It was a 2 day visit this time. The first day involved a 3 hour test that looked for a condition called fructose malabsorption. This could have been the cause of the loose stools. She was supposed to drink this high fructose drink and then blow like this:

multiple times over a 3 hour period. Sounds like a long involved torture session right?!? It actually wasn’t. We had to go back every 15 minutes times 2 and then every 30 min for the rest of the time so it actually went quite quickly. This is what we spent our time doing in between:

And she thought blowing into it was pretty cool so that helped a ton. I don’t have the official results but I’m pretty sure it was negative which is wonderful because if it was positive it would involve a radical diet change and there would be little the poor girl would be able to eat anymore.
This test was to rule out one possible reason for the loose stools though. Now we are pretty sure it was something called toddler’s diarrhea. This is caused by too much juice in a day. I was pretty much giving her anything she wanted to drink as we risk dehydration with her due to her liquids having to be honey thick consistency and her not liking that. When we first started this consistency she was close to having to be hospitalized for IV fluids since she wouldn’t drink it. Now she’s pretty good about it though. So, we’ve cut back on the amount of juice and she drinks it way more watered down and her stools have normalized.
The rest of the visit was to handle all her pre-op stuff. It is all taken care of now and she is ready from a medical standpoint for the surgery. (See the original post on her story for what her surgery is)
While we were up there we checked out Boston Common too. Jen had a good time watching all the dogs play with each other and immediately made a friend in this woman named Annie whose lap she spent 45 min in!! Here is a pic of her there:
The last 2 are pics of her being swallowed up by the bed in the hotel!! And one of her playing in the suitcase when I was packing to get ready to go. Next up is her surgery which will be on July 14.