Our double blessings

Monday, February 11, 2013

Home projects

I am so proud and grateful to my hubby

for all the projects he's done lately.

The boys are growing up and little by little we are figuring

out how to make things more accessible for our big/little boys :)

I know it looks like a simple coat rack

but I love that its hung low enough that Alex can reach to hang up

and grab his coat just like his brother.

I'd like to say hanging his coat up too but he's three and a half,

its not as much fun to put things away, ha,ha.

I should have taken a picture but today I DID find a random snow boot

just hanging out on the coat rack. too!

Alex is getting so strong although he still needs a little support.

We used to put a full booster seat on this chair but after awhile we realized he didn't

need quite that much support anymore.

Hubby rigged up this little seating system so Alex could sit at

the same table as his brother and still get the support he needs.

It is literally made out of four foam floor mats using velcro to keep them together

and a seatbelt bolted to the chair.

My favorite project yet? A ramp for Alex's bed!!!!!

Hubby really out did himself with this one!

We saw the idea forever ago on our friend Grey's blog.

and I never forgot it.

Now that Alex is bigger and stronger and becoming more independent, we knew it was time.

Thank you to Leigh and Andy for an awesome idea!!!

I don't think you realize how much you have guided us both with the technical stuff

and the not so technical stuff from the very beginning!!!! :)

The ramp slides right between the mattress and bedframe.

Its quite a work out for him but he LOVES it!!!

Guess who else loves it???

oops....traffic jam

sliding down over and over

ofcourse is the best part :)

Tests, I don't like tests. I Have always been too anxious a person to be a good test taker. Now as a parent I"m afraid I'm worse. Having to watch my little ones go through tests, well okay the medical tests I'm talking about now---well I dislike very much.

Life has been pretty darn good. I guess many of us bloggers can agree when you don't hear from us in awhile, it generally means things are status quo (or better). At least for me personally, I tend to write when I'm stressed about something. It helps to get it down on paper--well you know what I mean. It has always been a way for me to sort things out, gain perspective. If someone is struggling with something similar, well maybe in a small way its helpful to someone else.

Back here we first learned about the term Failure to thrive. I still wish they could come up with a better term, really! Anyway, things have been going along. I certainly don't have big eaters or fast growers but with some dietary changes and prescription soy shakes, we've certainly made some gains. Not the big ones that any of the docs have hoped for but slow and steady gradual gains. It should be called the pop tart and oreo diet because lets be honest, I totally abandoned the healthy olive oils, veggies, avocado spread stuff they wouldn't eat anyway in favor of a little junk food when faced with the alternative of feeding tubes. Yes, it came down to that discussion. When the nutritionist explained to me that no calorie is a "wasted" calorie when it comes to a growing child, it clicked. I still offer healthy foods, don't get me wrong but I let go of the guilt of the dreaded "junk" food if it meant that my boys could grow.

So a year and a half later we are still plugging along quietly. We are focusing on all the developmental gains the boys are making at school (more on that later), enjoying family and friends and the holidays and we hit a bump in the road.

A couple weeks ago I took Nicholas to the doctors for a check up, noticing his bathroom habits had changed. We got the okay to use some laxatives to help get things moving again. He's always needed miralax since he was a babe but even increasing that wasn't helping anything. So we used some laxatives for a few days and it seemed to help some. Until we stopped using it and then nothing for four days and the cycle would start again. Then I realized his appetite (never very good mind you) but now was almost non existent. To the doctors again, and she weighed him. Sure enough he had lost a pound and a half. What the heck? We went through "what else has changed?" talk. Can't come up with a darn thing. Now I'm keeping a food and bathroom log and feeling incredibly discouraged.

Before you start sending me notes, PLEASE don't tell a momma with a failure to thrive kid to just leave him at your house for a week and you'll get him to fatten up. honestly. All that feels like is its our fault, that WE are not doing something right. Trust me, I have done EVERYTHING I can think of to get my kid to eat. I have been bombarded with well meaning advice. For a mom with two little ones who could care less about eating, I spend way too much time thinking about their food only to end up throwing most of it away. All the boards I go to that talk about getting the most bang for your buck in terms of high calorie foods but they are all laden with things my two can't eat because of their food allergies. No milk, no eggs, no tree nuts. As frustrating as their food allergies are, its not the root of the issue. The issue is that right now Nicholas could care less about eating. Get him up in the morning from not eating all night long, should be ready to eat something, right? Nope. doesn't care, wants to play. Eats ONE bite of toast OR pop tart OR soy yogurt and says he's not hungry. He'd rather play. I beg him to take sips of his high calorie shake. I beg, plead, offer him to watch his favorite cartoon for five minutes if he just finishes four ounces. I have resorted to try anything to get the calories in, sometimes it works, sometimes it doesn't.

I have bribed, coerced, offered choices, taken away choices, offered nothing but his favorite foods, pretend I don't care about the food battle, made him sit at the table for XX amount more bites, offered a million snacks instead of meals, then stopped offering snacks and only done meals, offered dessert if he takes two more bites, refuse dessert if he doesn't. Honestly you know what he ate for dessert the other night? One quarter of an oreo cookie. I'm not kidding, then he was done. I have done everything honestly but force feed him. I have tried sending him to bed hungry when he doesn't want whats in front of him--really. except he's not. He doesn't care. Seriously. I understand the "typical" kid needs encouragement to eat their veggies, but to eat anything? I'm sorry--this just isn't normal and its ridiculously stressful.

Then to the next common discussion: nope my hubby and I are not giants. we certainly don't expect our kids to be either. We are not disillusioned. But an almost four year old shouldn't be losing weight without a reason. He hasn't been ill with exception of the run of the mill cold. Heck his twin brother had a terrible GI bug recently and he was still out eating and drinking his brother while being ill. And Alex certainly isn't a big eater either, Just doesn't make sense. Nicholas is down to 23 pounds and change. He's almost four years old.

The thing about "failure to thrive" is you very often don't get a "here's why." Its whats given when you have checked everything else out for inadequate growth and come up empty. So we may be stuck there, I don't know. He may have just hit a "stop" in the journey of "spurt and stop" and maybe he'll just pick up a little more again like nothing happened. I don't know.

We have a new pediatrician since our move to the new house and I trust her whole heartedly. She knows I'm worried and I think she is a bit too. She's doing a basic work up with blood counts, checking his thyroid and even checking for celiac disease just in case. We will get results in a few days. If nothing shows up on the blood work, we will trial a reflux medication. He had a strong history of this in the past and apparently children can have reflux without all of the typical symptoms. We'll trial it for two weeks to see if it helps with his appetite at all and if not we can file that away too. We are waiting on our follow up appointment with GI in four weeks as well.

Its a strange thing about these tests. I don't know what I"m actually hoping for. Part of me hopes for everything to come back normal, because ofcourse you don't WISH for anything to be wrong. But then again, then you're stuck with "what now?" what do we do with that? The other part hopes for a reason, and a fix but ofcourse you want it to be an easy fix, not something troublesome or scary. I know any one can relate to that.

so for now we wait and see.......

UPDATE:
All the tests came back normal, which is a HUGE sigh of relief. Nothing major going on which is a blessing but also leaves us wondering what the heck. We will still be consulting with GI in a couple weeks and I even think his eating has picked up the slightest bit so here's hoping. The doctor also decided to throw in some food allergy testing to re-check and the results stressed me out a bit. We already know he's highly allergic to everything dairy and then to a lesser extent, nuts and eggs. But the test came back that he's also allergic to soy. I kinda freaked out for a minute. His diet is pretty heavy in soy, and his main way of getting the extra calories with his prescription shakes. I didn't know what I was going to do. I talked with the doctor later and she talked me down from the ledge. She doesn't think its a significant increase and he's tolerating it fine. He's not vomiting, having hives or heck even eczema, all the things dairy did to him and his brother. She doesn't think whats going on with him now is related to the soy. We will continue to watch him and I am personally trying to find other alternatives that I can swap out without him missing out on the calories.

PLEASE don't send me messages about the potential negative impact of using soy in our diet.

When he was a babe in the NICU he had A LOT of tests done and on many it was noted that he had slow motility in his intestines. Basically means things go through very slowly. I'm guessing this is probably not a thing one outgrows, that some are just wired this way. My theory is perhaps this is part of the picture. Maybe not the whole picture, maybe a lot of little things colliding but it would make sense. If things move through slowly, you never really feel empty or hungry because in a sense, there's always food in there. For the first year of his life he and his brother were on a medication that supposedly helped increase the motility. We weaned them off eventually because we were concerned about all of the side effects and honestly we didn't really see a change so I don't think it truly helped anyway.

I'm sure we will be talking to GI at length but it may just be one of those things that we have to deal with and work around.

Sunday, January 13, 2013

Christmas

I apologize right off the bat. If you are not family or close personal friend (and even if you are), this is a massive photo dump. You may not want to sift through it all, or maybe you do, afterall the subjects are pretty darn cute. But you have been forewarned.

Words cannot express how grateful I felt this Christmas.

1.) The boys were sick just before and just after but not DURING this holiday season for the first year EVER. People that are close to us know that this was a huge deal for us.

I'm not talking sniffles when the boys get sick. I'm talking monitoring oxygen rates, using steroids, and nebulizers every three to four hours around the clock and even during the night to keep up their oxygen levels and help them breathe easier, etc.

It is getting better with each passing year as the boys get bigger and stronger but with their lung issues, any respiratory stuff still hits them really hard and its a constant worry whether they'll need a hospitalization when illness strikes.

they definitely have the doctor thing down.

I love watching them check each other's ears

or listen to the others lungs

and watch them nod their head

and say "uh huh, uh huh." LOL

Just the eve of Christmas Eve we took Alex in again to the doctors

and his oxygen was hovering around 92 even on steroids and nebs.

Usually 90 and below will send him to the hospital for oxygen and monitoring--

exactly what happened this time last year--

but gratefully we averted that and both boys

were feeling up to celebrating with all of our family and friends!!!!!!

It was exactly all I wanted for Christmas!!!

Nicholas is ALWAYS trying to hug on his brother.

He really is such

a sweet affectionate boy.

We'll often hear him say "I just trying to hug you Alex"

when Alex playfully pushes him away or tells him "No"

they end up wrestling

Nicholas will also be the first to say "I love you brother" at bedtime

or even spontaneously

during the day.

And although Alex may not be a hugger (except for his Momma)

there's no mistaking that Alex loves his brother too!

2.) This is the best age so far. Truly. The boys understand a little more about Christmas, and know enough to get excited about it all. They don't yet know that they can ask or or even try to demand for certain toys so its that blissful spot of just being happy for whatever comes. LOVE it!

3.) Getting lots of time to spend with our family and friends, sharing in the old and making of new traditions together. Lets face it, this is what its really all about.

We kicked off by celebrating Christmas Eve with my dad, sisters and brother and family.

Yikes, you will see I started off really strong with all the picture taking,

and it dwindled pretty quickly from here.