Saturday, September 10, 2011

A Smattering...

Just a bunch of random pictures from over the last few months.  And some updates and whatever else I think of ;)

Well I am 22 weeks as of tomorrow and so far all is going well.  I had my 20 week ultrasound a few weeks ago and the baby looks great.  Measuring just right, all her parts where they should be, she is a little wiggly dancer.
what happens when you leave Anna alone for a minute next to an open package of cookies

Thankfully nothing too exciting to report about Anna!  She is plugging along in her usual Anna way.  She has a SERIOUS obsession with is hysterical.  We received a pair of cowboy boots as hand me downs....and let's just say "She's gone country!".  She is not TOO picky about outfits I pick out for her but I had better pick the shoes she wants!
Mr. I don't need a nap!

After all of Ben's recent GI tests came back negative Claudio and I made a long discussed, but never implemented decision to take Ben off dairy.   He has struggled with chronic constipation and eczema since he was 2M old.  At the time the only thing he was eating was a regular dairy based formula.  Despite my instincts about dairy doctor after doctor told me there was likely no correlation.  He was tested for a dairy allergy via scratch test and it came up negative.

So, finally we just went with our instinct and eliminated dairy.  Things are definitely different.  He is pooping better (unmedicated), he is eating better (even without the 400 calorie Boost shakes twice a day he is maintaining his weight with REAL food), suddenly my very sedate little boy has a ridiculous amount of energy.  If I don't get him out of the house he is literally, and I mean LITERALLY, bouncing off the walls, he is even much more social: initiating play with other children, even children he doesn't know at the playground, talking to playmates (we were on a playdate yesterday with some friends who have  daughter a little younger than Ben.  I overheard Ben go up to her and say, "You want to hold me hand?  Come on let's hold hands!" LOL sadly, he was refused, but it was just so sweet and cute and not the sort of thing I have ever seen him try to initiate before.
During our last few meetings with the Feeding/Swallowing team at CHOP they have become a bit exacerbated at me for making this decision to cut dairy without some definitive diagnosis.  It is very difficult to boost calories without dairy.  And I understood that going into this experiment, but is a very slightly fatter child worth the poisoning effects that dairy seems to have on him?  Isn't it better to have a skinny kid who eats and is healthy and happy than a slightly fatter kid who is miserable, uncomfortable and surviving on medical foods alone??
They didn't see my point of view, but of course they can't force us to give him dairy.  I did, however, make an appointment with a new allergist.  One from CHOP who knows more about the difference between IgE (typical allergeric reactions) allergies an non IgE allergies (Ben's dairy issue is likely a dairy sensitivity caused by a different type of immune reaction called IgA or Igg and it is sort of new research and new tests and standards are being developed to detect these sorts of reactions.  I am convinced Ben has this sort of sensitivity, but I am finding in order to get him the care I think he deserves AND have things covered by our insurance that a diagnosis is almost essential....Doctor Mom won't cut it apparently.  So we will see what this Alllergist has to say). 

Their feeding therapy program is nearly upon us.  They start on the 20th.  I wonder daily what our days will look like.  The program is everyday, all day.  This leaves us taking the most notoriously trafficy roads during rushhour both ways.  The program is all day, but there is a LOT of downtime.  Basically they have their three meals a day with the therapists and otherwise we are basically on our own to find something to occupy ourselves.  And the other children's hospitals that have programs like this the program is usually done inpatient.  Not sure why CHOP does it this way.

We have had our first colds of the season already.  Poor Ben ended up with croup and on a three day round of antibiotics.  It was our first bout of croup.  Thankfully it wasn't too bad for long as he was calm he was ok and once he was on the meds he didn't have another bout of those terrible gasping, barking coughs.


Katherine T. Lauer said...

That is so interesting about the dairy! I am really curious what the allergist has to say and how this will all work going forward.

Is the feeding therapy 5 days per week or 7? And for how many weeks? I'm totally nervous for you! It is going to be a serious haul. Will Cla be able to make dinners and such since you'll be out of the house?

Jamie Carin and Claudio Romano said...

Katherine the dairy thing is interesting to me too. He is like a different kid in a lot of areas. The whole social aspect....and even my SILs dog that used to make him run and cry (a tiny shnoodle...smaller than my cat). Today we were with them and he quickly was just over it. Even coaxing and teasing the DOG! He has also overcome playground fears (the tunnel slide, the wobbly bridge, the twisty slide...all he was always far too afraid to even try and suddenly he is just all over it). I don't know if it is just coincidence or what...Our theory is that with the new found energy and feeling better physically he has the energy and brain power to just be able to reason, enjoy, play with nothing holding him back. I don't know though.

Therapy is 5 times a week and they will be at least 5 weeks because they are a sibling group (so trained separately and then trained together). I havent spoken about meals to Cla. He will definitely help. I considered having frozen meals ready but when pregnant and plagued by food aversions I know I would never be able to eat reheated meals. So I am somewhat playing it by ear.

John Moorehouse said...

Hi Jamie, I think it is great you guys going with your "gut" feeling on this. We have had to speak up to doctors in the past regarding the kids and what we were seeing and feeling and I am glad we did. It is not always easy but Mommy (and sometimes even Daddy) knows best. I enjoy my visits to your blog. Amazing flood pictures. We were like an island up here. Destruction to the north, south and west but in our immediate vicinity no problems. say hi to Claudio and the kids for me.---John

Allison said...

Luved catching up on your blog. The kids are so cute!