Monthly Archives: August 2008

Goldfish crackers!!!

The thing that Jennifer misses the most about being on the MSPI diet is goldfish crackers.  They were one of her favorite snacks.  She would cry for them when we first changed her diet and we would never let the boys eat them in front of her.  Our daycare is so great too that they even stopped serving them to the kids on the days she was there!!!

Well, the other day I was searching the net for some new recipes for her and came across this recipe for vegan goldfish crackers.  I figured heck why not give them a try.  SHE LOVES THEM!!!!!  She asks for them at every meal and every snack time since I made them!!!  Even Sam likes them!!  The hubby and I tried them and he wasn’t super impressed but I thought they were a pretty good substitute.  But really, the important thing is that Jen thinks they are great!!!  So I just wanted to share.  

Again, this is the blog where the recipe is.

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My babies are 3 today!!!

My twins are 3 today!!  I still call them my babies though it’s probably time to start dropping that line huh!!

I can hardly believe they are 3.  It seems like yesterday that I was being wheeled into my room after my c-section and seeing my hubby holding them and reality that I actually had TWO babies to take home setting in.  And then it seems like the day before that I was getting my older one out of bed and some voice inside my head told me to do a pregnancy test that morning even though we had been unsuccessfully trying for about 9 months at that point and I had all but given up on getting pregnant on my own again.

My life is so blessed.  I have a wonderful hubby and 3 wonderful children.  I only wanted 2 children.  You know, the whole I have 2 hands for 2 kids etc line…….  But then God blessed me with an extra and though it gets hectic at times (well most of the time!!!) I wouldn’t change it for the world. 

We are having a big BBQ for the 3 of them today as Benjamin’s b-day is this coming Wednesday.  Quite the busy week for us!

Here are some pics down memory lane………..

Now:

Jen at birth:

Sam at birth:


Another year down for Sam and his heart

Samuel saw the pediatric cardiologist on 8/21 and he was cleared for another year!  He said that his aortic valve is slightly leaky but that it is nice and stable.  He also said that the pressures across the membrane (his defect is a subaortic membrane or subaortic stenosis) are also stable when compared to last year.  What wonderful news!!


Down to nectar thick and glad to lend some support

We’ve been slowly decreasing the amount of thickness to Jennifer’s liquids since her surgery.  We are currently back down to nectar thick consistency.  This is quite nice progress since there is quite a difference between nectar thick and honey thick.  I think we’ll stay at this thickness a bit longer than we have at others though as she has been coughing here and there.  Only very small amounts but enough that we should probably give her a bit more time to get used to this thickness.

I also wanted to mention that I created 2 more pages for this blog.  One on MSPI and one on laryngeal clefts.  I also put up some new pics on the sidebars!  I intended for this blog to serve 2 purposes: 1) to get my thoughts and stress off my chest and 2) to lend support to others going through journeys similar to ours.  Both purposes have been happening nicely.  Since moving this blog from blogspot to wordpress it has really moved up in the search engines and I have been getting emails from other parents of kids with laryngeal clefts!!  I’m so happy about that!!  Keep them coming!!  Or click on the link for the support group/message board on the sidebar and join there.


A great place to go for some good food!

This past weekend our family took a trip to Maine as we usually do each summer.  As any of you with food allergies or that have kids with food allergies know……traveling is made that much harder.  We were staying with my in-laws so most meals were home cooked and fine.  But being in Maine we wanted some seafood too.  Plus Jennifer has developed a love of shrimp of late!!!

Most places are fairly accomindating to people with food allergies but at the same time it’s work to get what  you need.  I found one place where this was NOT the case.  My FIL wanted to go to this place called Five Island Lobster Co in Georgetown, Maine.  What else would I order for Jen there but shrimp!!  Unfortunately all they had there were fried shrimp.  So, I asked if they could help us in any way.  They said they could probably grill them and the woman at the register asked Mike (the one who became Jen’s guardian angel that night) if they could be grilled.  He said they could but then asked what she had issues with.  I told him and he said that wasn’t an option as the grill was covered with a no stick solution that was pure soybean oil. 

Their seafood restaurant (it’s an outside sit on the dock kind of eating place) consists of two restuarants actually.  The Lobster Pound and the Love Nest.  And they sell different types of food at each one.  One is mostly fried and hot dogs/burgers etc and the other is more lobsters and steamers etc.   My next question was whether they could take her shrimp and steam it next door instead of frying it.  They jumped on that idea and whipped it right up!!!  I was pleasantly surprised at how quickly it was handled.  Mike was on the ball with that one.  

The thing that made it that much more difficult is that gulf of Maine shrimp are pretty tiny compared to regular shrimp so they had to find something suitable to steam them in that they wouldn’t fall out of.  Then the next nice thing he did for us was to come running out to make sure she hadn’t used the cocktail sauce he had given us as he had double checked and it had soy in the ingredients!! 

So, if you have food allergies and find yourself in the midcoast of Maine be sure to check out the Five Island Lobster Co.  and be sure to ask for Mike.  He does an excellent.  And don’t just take my word for it……here is what others are saying too.


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%!!


Laryngeal cleft repair and post op visit

Jennifer had a type 1 laryngeal cleft that was diagnosed in Feb 2008 at Children’s Hospital Boston.  This is basically an anatomical abnormality in the larynx that allows food and/or liquids to enter the windpipe when they are swallowed.   For Jennifer the problem was with liquids.  After failing several swallow studies she was on honey thickened liquids.

Her surgery was done endoscopically (through her mouth) on July 14, 2008 by Dr. Reza Rahbar.  He is a wonderful man and will always have a special place in our hearts.  She stayed one night in the PICU to make sure that she didn’t have any airway problems immediately or in the first 24 hours post-op.  Here is a picture of her in the ICU just after she woke up:

and another picture of her PICU room:

She had no complications post-op and was eating several hours after surgery!!!  The following day she was moved to a regular medical floor for one more night.  She was so happy to get there as she was quite tired of being confined to the PICU bed.  On the floor she was allowed to go to the playroom to make crafts and walk around etc.  A couple more pics:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Finally on going home day she was given a bit more freedom and was allowed to venture outside to the garden they have there.  That is one of her favorite places in that hospital along with the bubble area.  Here are some pics of those areas:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 After being discharged she insisted on going back out to the garden to eat lunch.  There she got to have a visit with the clowns which she loved:

 

 

She has since had a post op visit where Dr Rahbar scoped her throat to look at the stitches and said her healing looked great.  From here starts the journey of weaning her thickened fluids.  For more of her day to day story during the actual surgery you can visit her caring bridge site too.