i.v.

I remember sitting in the ER of a Brooklyn hospital while doctors tried relentlessly to put an IV into Ira. I remember, that because of his trach, his cry was silent. Maybe if he had been able to make more noise the doctors wouldn’t have kept up their poking. I remember feeling like one doctor’s ego was being challenged. He was so determined to find a vein that he forgot he was working on an actual human who could feel every stick.

And I remember the moment I heard his voice. Ira was in so much pain and crying so hard that he actually figured out how to make noise around his trach. From then on he was able to make some vocalizations and communicate in a way that most children with a trach can not.

Yesterday it was my turn to feel a little of what Ira may have felt that day. I needed an IV for a procedure my doctor needed to perform. I was dehydrated and anemic. And after 10 sticks, still no IV. I ended up having to have the procedure with local anesthesia instead of being completely out. Not. The. Same. I went home with band aids up and down my arms and on my foot.

My Ira is one tough cookie. May he never have to be a human pin cushion again.

the joy (and sorrow) of eating

This week I began feeding Opal solids. Of course the term “solids” is relative as there is nothing solid about it really. I’m not sure how to describe this experience except to call it revolutionary.

You see, for 2+ years Joe and I have been trying to feed a child who hates to eat. Anyone who has ever watched Ira eat can vouch for the fact that eating any food (other than yogurt) revolts him to his core. He abhors it. Fears it. Dreads it.

And so, when people ask “How’s Ira eating these days?” I just have to chuckle a little. The assumption is that he is progressing and probably enjoying a happy meal about now. Not hardly. Our goal remains to feed him 2 meals a day of pureed food and the rest of his calories come from liquid given by cup or by g-tube. Oh sure he’ll suck on a sucker for a minute or two or try a bite of your ice cream but that’s all he wants. A few licks here and there. Nothing more.

And so when I fed Opal pears this week (I know, I’m supposed to start with veggies. Oh well.) I was half expecting her to H-A-T-E the experience. After all, her brother only eats pears to wash down the pureed oatmeal. But guess what? She L-O-V-E-D them. It was so fun to feed her. I had forgotten that feeding a child could be so enjoyable.

And it has interesting to watch her learn how to manipulate the food in her mouth – move it from side to side and gather it in the back in order to swallow. These are all skills that must be learned and practiced. Skills that Ira never learned and now is having a very difficult time mastering.

And so, I will continue to take Ira to eating therapy (where he is truly working hard) but then pull teeth practicing our new skills at home all the while watching our 6 month old master these same skills with a smile.

Six months of happy love

girls weekend

Oh New York. What am I supposed to do with you? When I laid my eyes on you this weekend, you felt like home. Except that someone else was living in my bedroom. Sophia and I stood at the bottom of “our” stoop and stared at each other. So many memories on those steps. Jack said Halloween just wasn’t the same this year. I have to agree.

The Lumberjack pancake dinner at the diner hasn’t changed a bit and neither has the traffic on Hoyt street. I was glad I brought my noise maker. It was fun to show Opal your tall buildings and she even got a glimpse of the Lady herself. I think she did anyway. I know I did.

So many special people live within your walls. Roan and Sophia picked up right where they left off. Didn’t skip a beat. And Matilda? Well, she and Sophia claim they’re sisters so what do you expect?

I don’t know when I will see you again. Hopefully sooner rather than later but in the meantime, know that you have a piece of my heart.

xmas texas style

Well, we had to go to Texas to get our white Christmas. And boy did it deliver. Too bad we didn’t bring our boots. Oh well. I guess grocery bags will do…

Glo worked very hard on Christmas lunch. Isn’t her table nice?

My beautiful girls…

Believe it or not, it was this guy’s idea for us to open gifts at 6:30am! Wake up Joe!

Love me some chunky baby hangin’ out with Gram.

Of course Santa would need his sugar fix.

What’s xmas without a little Beatles Rock Band with the cousins?!?

Happy New Year from our family to yours!

can’t find me? page the dr.

This week feels like it is all things Ira.

Monday: appointment with Cardiology (he got the green light for Wednesday)

Tuesday: appointment with G.I.

Wednesday: surgery for tubes in his ears

Thursday: FEEDS clinic (haven’t said much about this but Ira is working hard and trying new things in his mouth)

Overall, Ira is doing well. In many ways he is much more like a 3-year-old than a 4-year-old but we’re cutting him some slack. Just within the last few weeks he has begun some imaginative play. He has never really done this before so it thrills us to see him playing in his own little world. He is definitely a kid with special needs that go beyond medical. It is a continuous process learning how his little brain works and how to best meet those needs.

————————

Opal is a complete chunk. At nearly 5 months, she is well over 17 lbs and is wearing 9 month clothing. She is still not sleeping soundly through the night but is gaining ground in this area. No sibling or TV can be anywhere in the vicinity when she is eating or it becomes an impossibility. She wants to know what is going on with everyone, everywhere. She has found her toes and plays with them every chance she gets. And if you’re going to hold her, you better have a burp cloth close at hand – or plan on immediately changing clothes. Or smelling like spit up all day – anyway, what’s wrong with that?

————————-

Sophia had a double play date today. She invited twins over to play after school. At one point she asked if they could watch the VHS tape of me as Maria in the Sound of Music in high school. Is that not precious? On the outside I made sure we did not have time to squeeze that in but on the inside I love it. She thinks I am so cool. This will not always be the case so I’ll cherish it while it lasts.

————————-

One of my favorite parts of this time of year is receiving all the holiday cards in the mail. I’m worried we might not hear from some of our friends because of our address change. If you usually send us a card or want to this year, and don’t have our address, please let me know!

————————

My friend from NYC sent Opal this dress. It is sized 6-12 months so I had to get her in it ASAP.

Christmas 2009

I just listened to a beautiful Christmas story posted here. (While you’re there, take a minute to listen to the boy playing the uke. Awesome.) It tells of a family tradition of placing a quarter in each family member’s stocking as a reminder of Christmas in 1918. Though there had been Christmases of abundance in the past and there would be again in the future, this year due to WWI the family was barely able to keep the roof over their head. The quarter in the children’s stockings was all the family could afford. The tradition continued as a reminder that some years bring joy and new life while others hold tremendous heartache and/or great loss.

This touches a personal chord within me. The Christmas eve of 2005 brought tremendous heartache. After spending his first 6 months in the NICU, Ira had been home for 2 months when, unbeknownst to us, he contracted RSV. My family was visiting us in Brooklyn and Joe and I took turns staying home with Ira while the other took advantage of the Christmas sights in NYC.

On December 24th Ira stopped breathing. He was rushed to the hospital and intubated. He spent the next four months in the PICU and came home just before his first birthday with a trach and on a ventilator. The months and even years that followed were unlike any I had ever experienced.

This Christmas finds the Hayses with a new member of the family – a new stocking to be hung. Opal makes us laugh and smile on an hourly basis. I know there will be years in the future that will again carry loss and heartache but this year we will revel in the joy this new babe brings. And as our hearts rejoice, we remember the babe of 2000 years ago that brought great joy and hope for all.

i should be in bed instead of blogging

This morning Sophia happily posted this note on her door high enough so that her brother couldn’t remove it.

What?!?!?! Of course, her father was horrified when he got home from work. My dad said, “I think she misspelled r-e-e-d and meant to write r-e-a-d.” Yeah. I wish. I’ll be sure not to mention the part of the conversation where Sophia told me that Reed was just one of her boyfriends. Yikes.

———————-

We have been counting down the days until Wednesday when Ira was scheduled to get tubes in his ears. Last week he complained a couple times about his ear hurting so I took him to the pediatrician right away. I didn’t want anything getting in the way of this surgery.

Today I get a call from a nurse practitioner for the anesthesiologist. She said she saw in Ira’s discharge papers from this summer (when he was in the hospital for H1N1( that I was supposed to schedule a follow-up appointment with cardiology. She informed me that she couldn’t find a report anywhere from cardiology and asked me if I had followed through. I had not. I wanted to tell her all about everything I had going on this summer but truthfully it didn’t matter. She called me back a little later and confirmed that the anesthesiologist would not allow Ira to have the surgery until he was cleared by cardiology. Nevermind that Ira got a clear report in the spring AND while he was in the hospital this summer. AHHHHH! I’m so frustrated. My only hope is that the ENT can work some magic and get Ira in to see the cardiologist tomorrow. I’m not getting my hopes up.

———————-

If you’re not “friends” with Joe on Facebook, then you probably missed these…

not so happy feet

I’ve been wanting new slippers. I’ve had the same slippers since the winter Joe and I got married (we bought matching slippers at Eddie Bauer.) That was 12 winters ago. I’ve had my eye on winter crocs. Now, I’ve never been a big croc fan. In fact, I’ve never owned any crocs. So why I wanted this shoe is a mystery to even me. But I did.

Since they were $40, I decided to put them on my Christmas wish list. However, last week I was perusing through the holiday advertisements and happened to notice this coveted shoe was going to be half price at a particular sporting goods store. I tucked that little piece of knowledge away since I couldn’t possibly buy my own xmas gift.

Black Friday arrived. No one in my house had plans of getting up at dawn to hit the sales. Four a.m. rolled around and I found myself wide awake after feeding Opal. I happened to know this particular sporting goods store was going to open its doors at 5. I decided I needed to buy those crocs NOW and save myself, or Santa, $20.

I quietly got dressed, grabbed my phone and wallet, and ran out into the darkness. I was particularly hurried due to the freezing temperature (and notice, I did not grab a coat). I started the car, threw it in reverse, and began to back out of the driveway in the same fashion I do everyday. Everything was normal for about 2 seconds… until CRUNCH! I backed my van into my brother’s black suburban. I completely forgot it was there and because of it’s color, it just blended in with the night. I couldn’t believe it. Ughh. I was then faced with the decision of whether to go ahead with my mission or just abort. The $20 I was going to save suddenly seemed a bit insignificant. But hey, what else was there to do at that hour of the morning?

So now I am sporting $500 crocs and I intend to wear them for the next 12 years…at least.

sunday afternoon