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.

Wonderful new nondairy/nonsoy yogurt and ice cream

I went to our local health food store the other day to get Jen some more yogurt and found that instead of just the usual rice based yogurt they now have a coconut based one.  It was a bit more expensive (about 40 cents more) but I figured worth a try.  Boy am I glad I gave it a chance.

It is wonderful!!!  Much richer and creamier than we are used to in a nondairy, nonsoy yogurt.  And the taste just cannot be beaten!!  

Jen ate only half but I think that is because it is so much richer in taste than she is used to.  I was happy to finish the other half which never would have happened with the rice based one!

We got a container of the chocolate ice cream too and she is loving that too!!  Here is a link to the company who makes it’s webpage.  They even have a coupon you can print for them!

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.

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%!!

Surgery went well and some updates

Late posting this but all went well with Jennifer’s surgery.  She had her laryngeal cleft repair done at Children’s Hospital Boston on July 14th.  It couldn’t have gone better.  She spent two nights in the hospital there.  No complications or setbacks.  Thank the Lord for that!!  For the entire medical story click on her caringbridge site link in the sidebar.

She has already had her post-op appointments too.  We are to start weaning her thickness of her fluids around the beginning of August.  Then her next swallow study will be in early October.  Wish us luck with the weaning!

The other bit of news that we have received is that she is possibly fructose intolerant.  She had been having loose stools, bloating and gas for awhile and went for a fructose breath test which was abnormal.  They aren’t sure if the thickener she has to have in all fluids to not aspirate them played any role in the abnormal results though.  For now we treat her as if she is fructose intolerant and keep sugar out of her diet as much as possible and then the GI doc wants to repeat the test in a few months once she no longer needs thickened fluids.

My poor girl.  Now add sugar to the things we have to limit along with no milk and soy.  Uggh!!!  Though at least with the sugar it is a limit rather than a total elimination like the milk and soy.  She seems to at least have it pretty mild as taking all juice out of her diet seems to have helped a ton.

I think that’s the updates for now.  I’ll try and update more often.

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.

 

 

 

 

 

 

 

 

 

 

 

Yogurt update

The first batch of yogurt was almost a flop.  Here is what it looked like going in:

I used hazelnut milk and the starter from GI prohealth that is milk and soy free.  It said for the alternative milks to let it ferment for 8-10 hours and to experiment with the amount of starter and the fermentation time.  I set it up and went to bed figuring the kids would wake me in plenty of time.  By the time they did wake me the yogurt had fermented for 11 hours.  It looked like this coming out:

Pretty yucky huh!!!  At first I was just going to throw it away but since the milk and starter are so expensive I decided to experiment some more.  I used some of Jen’s thickener and got it to the right consistency.  It certainly isn’t creamy but it’s at least yogurt consistency.  Then for the flavoring.

That’s easier said than done for a picky toddler!!  I tried first with some smoothie mix that I had saved from our last batch but that was a no go.  Moved on to grape jam with the same results.  Then I remembered that I had some stage 2 baby food in the basement that I had bought when we first had to increase her liquids to honey thick and we were trying to avoid dehydration.  Ahhh….peach cobbler flavor and success!!  Here is a pic of her eating her peach cobbler flavored yogurt:

Of course, being a picky toddler she ate the first serving very well and now she wants nothing to do with it so I may end up throwing it all away anyway.  Baby steps though, baby steps.  Right?!

(still working on this post with the slow dial up so come back again)

Ice pops and yogurt

 

Living with MSPI means not being able to eat yogurt that can be found in the regular grocery stores.  They are all either milk or soy based.  Instead we have to use a rice based yogurt found only in health food stores.  But at $1.89 for a 6 oz cup it’s a bit expensive depsite the fact that Jen loves it.  

To try and save some money I have decided to try and make my own yogurt.  Last night the first batch went in.  I used hazelnut  milk as the base and the starter from GI Pro Health.  It  fermented for 11 hours and then went into the fridge.

 The directions said to ferment for 8-10 hours for the alternative milks and then to refridgerate for 6 hours after and then it would be set.  You’ll have to come back for the outcome as it wasn’t looking so hot when it went into the fridge!!  All separated 

and ichy looking.  Check the next post for the continuation of this 

part………….

As for the ice pops part of this post…..living with a laryngeal cleft means thickening EVERYTHI

NG that is fluid for Jen.  This includes ice pops.  How do you do that you ask?  I didn’t think you could and didn’t think that Jen would be able to enjoy ice pops this summer.  But thanks to a great SLP I have a way!!  

We make either juice or smoothie based ice pops.  Once the “liquid” part is ready then we add enough thickener to the solution to make it the consistency that is safe for Jen to swallow.  Into the freezer and abbra cadabra thickened ice pops!!

The pictures in this post (not all are here so come back in a few days to see the rest as I’m impatient with uploading any more!!)  are because at first while we were experimenting with ice pop making we were originally making ice pops using dixie cups and straws.  Not the best way!!  

So we went on an adventure looking for actual ice pop molds and the kids were so excited when we found them.  Then last night we sat around the blender and made smoothies out of oatmilk, bananas, mango and strawberries.  Added some thickener and into the molds.

The nice thing about knowing that we can do this too is that we can enjoy ice cream as a family outing this summer.  We just bring an ice pop for Jen in a cooler and she is fine with eating this while we are enjoying our ice cream.  

We can also do ice cream based ones.  We use rice based ice cream due to the MSPI, soften it in the microwave just until it is soft enough to work with, mix in the thickener and refreeze.  Works like a charm!!!  Living with these chronic conditions is bothersome to say the least but a little adaptation goes a long way 🙂

The $80 margarine

Have you ever spent $80 on margarine?  I have!!!  Yes, you read that right.  Jenny can only have margarine that is not made with milk or soybean oil.  That doesn’t leave many options.  We were able to find some last year around passover in a grocery store that caters to kosher Jews which was wonderful.  But it didn’t last forever and the store stopped carrying it once they ran out as it is a product that is only made for passover.  

A dear friend of mine (who happens to be Jen’s pediatrician and also has a son with MSPI) and I have been on a search for more margarine ever since.  We had been searching store after store and website after website for more.  She even had her DH searching when he was away on business trips!!!  The nice thing about this was that once either of us found it we could buy in bulk and split it.  

Both of us were terribly busy the week of passover and I guess there was a problem this passover with one company that usually makes the product not making it so we didn’t get to get any this year.  This led us to great difficult as we were both out by that point.  This started me on a massive search for it before all the companies ran out of whatever they had left as they usually make the product and then once it is all sold that’s it until the following year.  I started an internet search again of speciality butters and came to MidAtlantic Vegetable Shortening Co.  Called them and Yes they make it!!!!  BUT  they are wholesale only so don’t have any of the product left as it was all distributed to the smaller companies.  Ugggh but at least a good start!!

Going next to the phone #’s MidAtlantic had given me (oh and the manager there was wonderful and had even told me that if I was unable to find any to call him back and he would call his competitors and help me find some….special people do still exist!!!)  I started calling the smaller companies.  Struck out a few times so went to the # for the distributor for the state of CT.  She was quite nice but couldn’t help unless I had the specific UPC # for the product.  Took her specific name and told her I’d call her back with this #.  Then went to search for it.  

In this search I remembered that I had bookmarked a site that was a Kosher butcher/deli in NYC called Park East Kosher Butchers that had told me they would have the product again in March to prepare for passover.  I had previously talked to them in Nov or Dec I think and they were quite helpful when I explained why I was looking for it.  So, why not call them again and see if they had any left right???  I get this nice lady on the phone and explain my story.  She says yes they still have some!!!!!  I ask how much as I need some for my Jen and the other Jenn (the pediatrician).  She says plenty so I ask for 6 tubs.  Then I continue to ask some questions as I want to make sure it’s the EXACTLY CORRECT product before I have them ship it.  I mean why have them ship margarine if it’s not one Jen & Jenn can have when we can go to the local grocery and buy ones they cannot have right?!?  

This woman is being quite nice and patient with me and answering all my questions.  A few she doesn’t know and is asking someone that is in her office with her.  A few questions into this the man in the background that she is having help her with the answers says (and I quote exactly) “What’s with all the f**king questions about some damn margarine?”  My jaw hit the floor.  I was shocked to say the least.  But I rein in my temper and finish the order.  I order 6 tubs.  3 for each Jen.  

Then she asks if there is anything else she can help me with.  So I ask to speak to the man from the background.  Well, turns out  he has left the office.   I ask her to give him a message for me.  That I know that I’m ordering a passover product several weeks after passover but here is why: and go on to explain about my 2 1/2 yo daughter and some of her issues….blah blah blah and how rude and unprofessional he was with a customer on the phone that is ordering $35 worth of a product from his company.  (Yes they are $6 a tub)  She asks to put me on hold……..sure why not.  She comes back and says she looked all over for him and wanted me to speak to him but she cannot find him.  Probably better I tell her as if I had talked to him I probably wouldn’t be getting my product when I got done chewing him a new one!!!!!  But to just tell him that they are lucky that I had had such a hard time finding this product as if any Joe Schmuck sold it they would have lost my business and you’d better believe I won’t be ordering any more from them should I need anymore.  Next passover if I’m out then I’ll make sure to order early from someone else.  She’s telling me how sorry she is etc and I was very nice to her as it wasn’t her fault but at this point my blood is boiling to say the least!!!  We hang up and my margarine is to arrive the next week.

It comes (a day later than they had said it would I might add) and I cut open the inventory list.  Now, I had never asked how much it was to ship as I didn’t really care since I needed the product.  I mean the girl was out of margarine and this was the ONLY place I could find it.  

Out comes the packing slip with the totals……6 tubs margarine at $6 each = $36, packing and icing fee $15 and 2 day fed-ex shipping charge $35 totaling $82 dollars for margarine!!!!!  OUCH!!!!!  Guess they got the last laugh huh.  Jerks.