April is a busy month!

April is a busy month for Thomas.  He is starting to see Early Intervention at daycare.  He will be seeing an occupational therapist once a week for drinking and a speech therapist once a month just to check in a make sure he is doing okay.  He saw the occupational therapist (OT) for the first time today.  We basically just discussed what was going on with Thomas and she told me what I had already assumed... it's really hard to teach a kid to drink when it's honey thick liquid!  You have to wait so long for the liquid to move, so by the time he "drinks" the liquid hasn't even made it to his lips!  He does have some good days at daycare where he will drink 1-5 ounces, so that's great.  He won't do it at home though!  He will demand the spoon.  Of course, when he sees an empty cup, he has no problem showing he has the skills needed!!!!

We will see the speech therapist in 2 weeks, but I am not too concerned with it.  He says things like "bubble" and "water" and he understands things we say.  Coming up on April 11, Thomas will have another modified barium swallow.  This is where we test him with different thicknesses of liquids.  I am trying to not get my hopes up because I have a feeling we will be stuck at honey thick, but it would be great to just downgrade to nectar thick!  We then see the ORL surgeon on April 26 to discuss the results and our game plan (like do we need to fix the cleft).  On April 28, Thomas will have his endoscopy.  This is for his eosinophilic esophagitis (EE).  They will be taking biopsies of his small intestine and his stomach.  We have to wait 1-2 weeks for the results and found out if his EE is gone.  It involves counting numbers of different cells.  If it's gone, we can decide to add something back (as you know, I want to add dairy).  If it's not gone, we will have to eliminate soy, which will be VERY difficult.  He is currently on soy milk and it's in a lot of things. 

So that is Thomas' April.  Busy!  Hopefully with lots of good news too.  In the regular world of Thomas, he has become a fan of the downward dog yoga position.

I have about 20 more pictures of him doing this.  He also loves if you peek at him in between his legs.  He laughs out loud everytime!  He has upgraded himself to a booster seat.  No more high chair!  I kind of guessed he was ready for this, because he would say he was all done eating, but then I would take him out of the high chair, put him in my lap at the table, and then he would keep eating!  He loves the booster seat!  And I finally got him crayons so he can color... that gives me a little more time to finish eating my own meal!

He continues to do the "ear rub" when he is tired.  He has been doing this since he was about 6 months old.  This is him at the end of the day....

He loves his chair.  He climbs all over it.  Jumps up and down, slides off, jumps off... This is him dancing on the chair while watching his movie before bed time (which is a children's songs movie)...

Another thing we have discovered that Thomas does is "pop" when you say the word.  He bends down and pops up!  Steve and I have never done that, and I confirmed that daycare does not do it either, they don't do it in his movie we watch (Pop Goes the Weasel), so we have no idea where it came from, but it's pretty cute!

As for Steve and I, Steve has been really busy at MIT.  He is having a meeting with his committee in May to present a proposal for his thesis.  This is a 50ish page document that they will look over and either say yes, do this or no, this is stupid and a waste of time.  He has been meeting with his adviser here and there, so we are really hoping that he would have said something if it was a waste of time (his adviser is on his committee).  But the good news is that he is working really hard on this document and making it a great paper because he will be able to use it in his actual thesis, and, therefore, already have some of it written!!!!  That will be amazing.  We did manage to have a date night over the weekend, we went to a new pizza and wine bar (could there be a better combination???) and a fun, upscale bar with 25 beers on tap.  It was a lot of fun, though sometimes I worry about what the babysitter thinks when we come home after maybe having a drink or more than we should have... oh well.  I have just been continuing to try and be as supportive of Steve as possible and as happy and cheerful as I can be with Thomas though I can't wait for the day when Steve works normal hours and has the weekends off.

I will close this with a funny, potentially gross, picture that I find hilarious.  Can you guess what Thomas is doing?  My mom knew right away!  Haha.

A "healthy" week!!!!!!

 Despite cough and runny nose, Thomas made it through the past week fever and wheezing free, therefore, NO DOCTOR APPOINTMENT!  It was amazing.  And he is finally getting better.  Instead of focusing on illnesses, I have decided I really need to focus on the fun we are having as Thomas grows up.  He is really starting to show more and more personality and I think that in the next couple of months he will start repeating everything we say (I really need to cut back on cursing one of these days...). 

As far as personality goes, he is still really outgoing.  But a new trait has emerged.  Thomas is bossy!  When he wants you to sit down and play with a toy, he lets you know.  If he wants you to splash with him in the bath tub, he points it out.  If one hand isn't splashing he will take time to let you know, it needs to be splashing too!  He points, makes a lovely "uuuhhhh" noise, and shows you what you should be doing.  It's really funny, yet I am afraid where this is going.  I don't like the temper tantrum that occurs when you don't listen, but I think at some point we might have to not always do what Thomas says.  But for now, I will indulge him, and sit in the chair I am supposed to and bang puzzle pieces on the table.

He is still doing great in daycare.  He apparently likes to hang out with the older kids, observing.  Today, when I picked him up, the older kids were kicking a soccer ball, chasing after it, and Thomas was right there with them!  It was too cute.  The sharp turns always got him though, he would fall down, but get up and get right back into it.  He is starting to learn to kick things instead of thinking everything has to be thrown.  So, hopefully soccer is in his future... I would be happy to play with him!

As far as speaking goes, he has mama and dada down.  Ball and bus are both "buuuuuuuuhhh".  I have gotten him to say basketball twice!  It's "backetbaw".  This weekend he really got into the "dooda" of Camptown Races, so that was pretty much all he said all weekend.  We went the library, he LOVED it and was just running up and down the aisles screaming dooda over and over again.  And there was a whole kids wing, so it was okay that he was screaming.  We did not venture to the adult section, I can reserve books online, it's easier that way. 



The latest in health drama is trying to schedule the urologist, Dr. Rahbar (his ENT surgeon) and GI to do all his things he needs to be "under" for at the same time.  Naturally, the date they came up with was "early July".  I was very discouraged.  I got ahold of Dr. Rahbar's surgery scheduler and she helped a little.  Thomas has a swallow study coming up on April 11 (a HUGE deal), he will see Dr. Rahbar on April 26.  At that point we will know if we are still doing "wait and see" with swallowing or if it's time to do the next step and fix the cleft - and no matter what date I set now, the result of the swallow study could change things anyway.  So, while I was frustrated and upset that she didn't call and say Thomas' surgery is tomorrow, after all, I am very anxious to figure out what is going on with his EE and when we can introduce foods, after spending the evening with Thomas and him enjoying his latest free of every allergen meal (homemade spaghetti sauce with brown rice pasta), I am willing to wait potentially 3-4 months to figure out if we can adjust his diet again.  Sigh....

Is spring here yet?

Spring "started" yesterday, but I don't believe it... the snow outside tells me otherwise!  Yuck!  It's official, I am sick of winter!  It's already approaching the end of March!  We have been very busy.  We got the results of Thomas' patch testing, it revealed.... drum roll.... NOTHING!  So, this means out of the 3 tests he had done (skin, blood and patch) eggs showed up in 2 (skin and blood) so we will call that a legitimate allergy.  Wheat, barley, peanuts and banana showed up in the blood test (barley and banana were right on the margin) so I am not sure how I feel about calling them "allergies" and milk, dairy, casein or any other variant of dairy showed up in none.  However, 50% of cases of EE are dairy related and of that group, 25% of them never test positive for a dairy allergy so that is why it's out.  But, since it's the one thing that he didn't test positive for, I have decided it's the one thing worth trying to add back in and rescoping him for.  They would be willing to keep rescoping every 6 weeks and add one allergen back in at a time, but I think I would be satisfied with adding just dairy back.  Cheese is a great snack and I think that if you melt enough cheese on any gluten-free thing it might just make it taste great.  However, if they do this scope and he is still reacting, we have to reduce the top 6 allergens... corn, dairy, soy, wheat, peanut and something else... but eliminating those 5 terrifies me, so let's hope it doesn't come to that!  Thomas was also seen for his hydrocele (his problem "down below").  They are going to coordinate with GI to fix the hydrocele and do the scope at the same time!  This is great... it means he only has to go under once.  Naturally, ENT wants in on this opportunity to have Thomas sedated, so he will be scoped by them as well.  He sure is a medical wonder.

So, other than that, since I posted last, Thomas got very sick again.  Another nasty cough, fever, drainage, the works.  He missed a lot of daycare, therefore Steve and I missed work and school.  Then I got sick, I had an ear infection on top of the nasty cold.  I know Nyquil gives me ear infections, yet I still take it when I have a cold... I don't know why I do that to myself!  Then we all finally got healthy and made it down to Jacksonville for the wedding of Meredith (my college roommate for 2 of my years in Gainesville) and James.  It was great to see them and celebrate! 

While there, we stayed with my sister, Kelly, her husband, Mike, and my nephew, Dylan.  Dylan is only 1 year older than Thomas.  They had a lot of fun together!  We took them to the zoo.  Thomas fed giraffes!!!

He giggled every time one came up to him.  Thomas and Dylan had so much fun playing around elephant statues.

It was just great to get out of the cold of Boston and enjoy some great weather.  Thomas had so much fun playing in Kelly and Mike's backyard.

It was so great to visit with family and friends in our 36 hour trip to Florida!  When we got back up to Boston, Thomas had his 15 month check up.  Yes, it was a month late.  He got his last round of vaccines!  He doesn't need anymore until he is 4!!!!!!!!!!  I was sooooo excited to hear that!  I no longer have to dread the "well baby check ups".  Yay!  He is getting tall!  He can reach door handles and it makes me nervous.

He has also finally adjusted to daycare.  He no longer cries when I leave.  In fact, he hardly even acknowledges I am leaving!  But I prefer it that way.  It makes me feel a lot better about leaving him there.  He is happily playing with the other kids and apparently he tries to hang out with the older kids (2.5-2.9 years).  Here is picture of him after what I would call a successful day of painting at daycare.

We got a glimpse of what spring could be last week.  It could be great.  But then it went away.  We took advantage of it while it was here though.  On Thursday, Steve came home with me and Thomas (usually he stays at MIT until about 9 or 10pm every night).  On the way home we stopped at a park and Thomas got to swing and go on a slide.  He LOVED it.  I loved just being outside letting him run around.  He walked almost the whole way home (a mile!).  He slept great that night.  The next day we went out to dinner and got to sit out on the patio.  I have really come to appreciate the whole "outdoor dining" experience now that there are times when it's too cold to eat outdoors.  It was great.  Then just as quickly as the warmth arrived, it went away in very strong wind gusts that apparently knocked almost every kid in Thomas' class over.  Thomas did not get knocked over though!  We had one of the best weekends at home we have had in a long time.  Steve was able to go to MIT from 9-7 on Saturday, Thomas and I did errands and napping.  Then Steve stayed home with us on Sunday and I got to go for a very long run while Thomas and Steve took a very long nap.  I attempted another gluten-free, dairy-free, egg-free dinner.  This time I had much better success with the taste tester.  He approved the modified goulash!  It's basically ground beef, potatoes, diced tomoatoes, kidney beans and onions in a baking dish.  I'm okay with, Thomas is okay with it, so I will not question it.  And I had time to make him bread so he has bread for the week!  SUCCESS!

One last exciting bit of news was that last week was the first week since, well, maybe when Thomas was 3 months old, that the entire Gildea family was healthy.  I am sure I will regret saying that, Thomas does have a new cough right now.  But really it was the best real week!  Everyone healthy and happy!!!!

Wheat-free weekend!

This weekend we finally had time (and cookbooks!) to figure out what we need to make some good wheat-free, dairy-free, egg-free items.  I have been feeling really guilty lately because most of the stuff we have been feeding Thomas comes from plastic packaging, cans and the microwave.  Things we made this weekend were oatmeal pancakes, apple muffins, bread and shepard's pie.  We went on a crazy, long shopping excursion on Saturday to get tons of ingredients.  Luckily, Steve and I weren't the only exhausted people and we all got to take a 3 hour nap in the afternoon!  Sunday was baking day.  The oatmeal pancakes turned out great!  They looked like REAL pancakes... and tasted sort of like real pancakes:

Most importantly, though, Thomas LOVED them... here he is devouring them :)

The apple muffins are great, Steve and I love them, but unfortunately they did not pass the Thomas taste test... so we have breakfast for mom and dad this week!!!!  We got a bread recipe from Cracker that I was ready and willing to attempt, but we happened to go to Stop and Shop and were checking out the gluten-free boxes of bread and found one that was pretty much the same ingredients.  We also got Ener-G egg replacer so we could use that where it called for eggs.  I was really nervous about the bread while I was making it.  It was supposed to rise, you bat it down, then it was supposed to rise an inch over the pan and you bake it.  When I made it, it did not rise at all, I put it in the pan, it rose maybe a half inch, I almost just didn't bother baking it.  But thank goodness I did!  It tasted just like regular bread AND was soft and fluffy AND Thomas loved it!!!!  I think this might have been one of my proudest moments.  I don't know why, I mean, it's just bread, but for some reason I was really sad that he wasn't eating bread anymore, and now he can!!!!

And then to make this even more rewarding, Thomas took a drink!!!!  He has been getting really good it, especially at daycare.  Today, he drank about 3 ounces from a cup!

He is warming up to the Shepard's Pie.  Unfortunately, with all this cooking going on, Steve didn't have a lot of time to do work.  But we had a lot of fun together.  We discovered that Thomas gives kisses!!!  This is what happened when I asked for a kiss:

A nice open mouth kiss on the cheek :)  He also LOVES his chair.  He sits and reads in it, he jumps around in it, dives off the edge (scary, but he laughs all the time)

Next up for Thomas is patch testing.  We got the patches put on today.  They want to make sure Thomas isn't allergic to anything else before we proceed with the scope to check on his eosinophilic esophagitis (EE).  The downfall of these patches is that he can't have a bath for the next two days!!!  He is going to be one stinky, sticky guy.

On Thursday we get the results.  Let's hope that there is nothing added!  If nothing is added, we are already 3 weeks into this diet with 3 weeks to go until we can re-scope!  I am really hoping since they have not actually found a milk allergy that milk will be the first thing we get to add back (cheese, cheese, CHEESE!!!!!).

Intro!

Hi Everyone!  Welcome to the Gildea family blog.  We are going through quite a journey these days as we try to get Steve through school and get Thomas healthy!  I thought having a blog would be helpful for everyone to keep track of what is happening with us up here in Boston!!!!  I hope to keep this updated at least once a week.

This weekend will begin adventures in wheat-free, dairy-free, egg-free cooking!  I will let you know how it goes and if the taste tester (a.k.a. Thomas) approves!!!