My It's Hot

Just a quick, fun post (and a review) of our new Lil' Squirt Baby Pool from One Step Ahead.


First of all, this thing rocks . . . err . . . squirts. At only about $20, this thing is sure to beat the heat. You hook your garden hose up and voila! Once it fills up, you have a few dozen gentle fountains of water, and some stronger ones in the middle. AJ and Abby played in this most of the afternoon -- and that's saying something! Check this out.

Some T21 Ink

Meg and I went last Sunday to get some new ink from Billy at Liberty Tattoo. My second, her first. I love tattoos -- always have. I'm a huge Miami Ink fan and I find many tattoos fascinating. Although I admire many of the ones I see, I don't necessarily want them on my body. For example, I may see an amazing rendition of a human skull with a snake crawling through its lifeless eye sockets, but it doesn't mean that I'm going to get one. Likewise, tribal tattoos can have amazingly intricate patterns, but last I checked, I didn't have and Fijian ancestors.

No, any tattoo I have must mean something to me. And the ones we got last week certainly mean something. Down Syndrome Awareness ribbons. Here are some pics. Enjoy.

Her Story

I know that it has been a while since I've blogged about Abby's story. I'm having difficulty with the next section. Not emotionally, but strategically within the context of the entire experience. That being said, I've found this exercise to be both therapeutic and emotionally draining, which is why there is normally a bit of time between 'episodes'. And in the interim, I try to blog about one or two light-hearted topics (when someone doesn't throw out the R-word that is). I can normally just feel when it's right to continue. And I'm starting to get that feeling now, but as I've said, I've run into a little touch of writer's block. Be patient, dear readers, it's coming.

Serendipity

For various reasons, I must remain silent regarding some details of the experience I wish to share with you. Pseudonyms are being used in this story, and if this post seems unusually vague at times, know that there is a reason.

There is always a reason.

Last week, I was unfortunate enough to encounter the "R" word again. Retard. Retarded. The variation matters not. It was uttered by someone who knows better. In fact, it disappointed me quite a bit to know John in particular used this word. I immediately became defensive and formulated in my mind what action I would take. It would have to be addressed.

It was not until the next day that I would be able to do anything about it. And I was pleasantly surprised as someone else approached me before I did. Amy, who I think very highly of and who was familiar with this situation approached me and asked if I had been offended by this. I said that I was, and that I was really very disappointed. Not only that this word had been used, but that it was John that used it. Amy and I talked about it at length.

I'm tempted to say that it would not have been appropriate for me to approach John, but that's not quite it. It's a little more political than that. Amy asked if I wanted her to say something to John and I said yes. I'm positive that she will -- if she hasn't already. Amy will probably fill me in on the conversation, but maybe not. It's fine either way.

I thanked Amy for coming to me about this. It meant a lot. As I walked away from her, I thought about it and felt good. I'm glad that John will realize what he said. I hope he's a little embarrassed. But more than that, I hope he realized the impact of what he said.

And then I saw him. A man that I had never seen before, or if I did, one that I never really paid much attention to.

Wearing a Buddy Walk t-shirt.

I smiled. And as I kept walking, a feeling of pride grew inside me.

And then I realized what I was wearing. A blue shirt and a yellow jacket-vest.

Fate. Karma. Serendipity. Call it anything you'd like. There was something very special in those few moments.

And there's one more thing. As I was doing a Google image search for the term "serendipity", I found the lovely picture that opens this post.

It's of tulips.

I found it on page 21.

Serendipity indeed.

Don't Do This - Vol. 1

I consider myself to be a competent parent. After all, recent hospitalizations aside, my kids are still alive and well. I'm still alive too, so that's saying something. That must have been what Darwin meant by survival of the fittest. Come to think of it, I'm pretty sure that I've never been directly or indirectly linked to the demise of another human being.

Those facts therefore give me license to share with you nuggets of wisdom that I have accumulated through experiences which, since they did not kill me, made me stronger.

One night, about 4 years ago, when AJ was just an infant, he and I were playing after dinner. I was laying on the couch and had him aloft over me. He had eaten squash or sweet potatoes, something like that. As an infant, AJ never spit up.

See where this is going?

My mouth open with the joy of playing with my first-born son, I wound up eating squash or sweet potatoes, or something like that.

Fast forward 4 years to yesterday morning. Playing joyfully with my first-born daughter in a similar position, we anxiously awaited the arrival of her nurse with the hospital discharge paperwork.

Gee, she seems a little stuffy. Let me get the bulb suctioner. She hates the bulb suctioner. I love getting snot out of my kids' noses. Sometimes I think I'm close to actually pulling out some grey matter. What can I say? There is something very satisfying about it. And when I squirt the saline up there to loosen that junk, I show no mercy.

So there I was, laying down with Miss Abby sitting on my chest, bulb suctioner firmly up (way up) one nostril. Ahhh. The sound of that suctioner doing its job. It's a delicate technique you know, considering the stringiness of most saline-soaked snot. You need just the right touch to pull the snot from the nose and suck it up into the bulb. It's tricky.

And when things don't go well, you don't want to be laying down with the child sitting on your chest suctioning goop from the deepest part of his or her nasal cavity. As good as you think you are, it's not worth it.

Alas, I didn't have my 'A'-game that fateful morn. And much like I found myself with AJ's dinner in my mouth so long ago, so too did my precious daughter's boogie juice end up in a very bad place. Though she found it delightful to watch Daddy helplessly grasp for a towel, Daddy did not enjoy the experience as much.

And so, as a hunter tries to be downwind from his prey, so must we as parents be mindful of the devastating effects of gravity with respect to matter expelled from our dear, dear children.

Take heart. Take note. And stay dry.

OK, Better Now. Really.

Abby was discharged from the hospital (again) around noon today. She had a great night last night and another good day today.

We are going to try and make this one stick.

And, We're Back

Home, that is. For the first night in the last 4, we are all together. At home!

Abby came home from the hospital this evening. She is still not in the best of moods -- cranky and wants to be held a lot-- but otherwise is doing OK. She is back to just 1 liter of O2 (1 1/2 at night) and holding her own. She'll be on antibiotics for the next few days, but is finished with the steroids (which should have been obvious when she threw the refrigerator across the room).

I doubt I'll be able to stay awake much longer, though I would love to watch LOST tonight. I don't think that's going to happen though, so shhh! No one tell me what happens.

Right now, I'm looking forward to night #3 on my new pillow!! Wow!

Abby was readmitted to the hospital around 2:00am this morning. The doctor is confident that:

1. It is NOT a new illness
2. It is NOT the old illness coming back/getting worse
3. It WAS a big mucus plug that we couldn't get out giving her chest PT at home

Meg and I thought this is what it and it sounded reasonable judging by the way last night's events unfolded.

Meg fell asleep last night holding Abby on the couch. Sound asleep, her sats were around 95% on 1.5 liters. We checked her again a little while later once she was in her crib, and she was still in the 90's. Then, I gave her a Xopenex breathing treatment and that's when things got bad. Seems likely that the neb loosened the mucus and it was just too big for her (and us) to work out. By the time she got to the ER, her sats were high 70's -- not good.

So right now, she's back to just 2 liters and in the mid-90's again. They are mimicking the type of support we'd be giving her at home to see how she does.

I'll be taking the night shift tonight as my company is closed on Good Friday, so hopefully we'll have a quiet rest of the day.

Me And My Sickie -- Part Deux

Just a quick post that Miss Abby is in the hospital.

Again.

With pneumonia.

Again.

Hopefully, we'll be coming home tomorrow, but I'd certainly appreciate any thoughts, prayers, crossed fingers/toes, etc. that are out there to spare!

Me And My Sickie

Is there anything more pathetic than a sick, helpless, little kid with a head cold? Ball full of snot aside, there are worse things in the world than cuddling and napping on the couch under a soft blanket all afternoon with my little peanut.

We were supposed to head to my in-laws for the day for Megan's grandfather's birthday party. But since Miss Abby is currently on O2 (just 1 lpm, nothing to worry about), she and I stayed at the homestead together as an 18 month old, sick or not, is not allowed to be home alone and unsupervised for an extended period of time. Betcha never knew that.

So now it's off to make Abby her cocktail. That's right. A cocktail. How else do you think she's going to sleep tonight?

Well, OK, so not a cocktail in the conventional sense. In the next few minutes, she'll enjoy (in one form or another):

• Flovent
• Xopenex
• Atrivent
• Singulair
• Omnicef (day 10 - yahoo!)
• Orapred
• Motrin
• Tylenol

Yummy.

And while I'm doing that, AJ is laying down watching "A Charlie Brown Christmas" a mere 3 1/2 hours before April 1st. And no, we don't have it on DVD. It's been living on our DVR since December (and "It's The Great Pumpkin Charlie Brown" has been on there since October).

Good grief.

I Think I'm . . . Yeah, I'm Disappointed

So the 'rents were awesome enough to take AJ for the weekend. They took him down to the Jersey Shore to where my grandfather lives year-round now. They had a very nice time, though AJ was a bit under the weather. My grandfather gets a kick out of having the great-grandkids running around. Between my Dad's and my Aunt's (Dad's sister) family, we are clearly the favorites. And by that, I mean that he (my grandfather) gets significantly less annoyed by my kids than my cousins' kids. But I digress.

Meg and I spent a nice weekend with Miss Abby -- just the three of us. On Sunday though, we headed up to North Jersey and checked into a nice Radisson just off the New Jersey Parkway. Now, we didn't do this simply to enjoy the urban sprawl that is Paterson, Paramus, Mahwah and the quaint surrounding towns. On Monday, Abby had an appointment with the feeding clinic at St. Joseph's Hospital for Children.

Now, I need to provide some history here, so bear with me.

Abby doesn't eat.

And that's about the gist of it.

OK, so maybe a little more history would be useful. Abby had surgery to repair her esophagus, has reflux, used to be tube fed (NG tube), and has had all sorts of nasty stuff literally shoved down her throat. It took 10 months before she took sustainable nutrition solely through a bottle (and that's with formula mixed to a higher than normal concentration). She has slowly come to accept food, but only in small insignificant amounts. And for the most part, she needs to be in control (that's a big thing with her). Coming at her with a spoon full of baby food is just asking for trouble. Along with a shirt full of baby food.

We've seen many specialists over the past year to help us get control over the situation. We see a pediatric GI doc regularly (who is incredible), she gets OT and Speech therapy that also address her feeding issues to some extent, and we've been to the feeding clinic at the Children's Hospital of Philadelphia. Most recently, we went to a private-practice speech pathologist (who does not take insurance). We actually got some good advice from her and have seen some optimistic if not encouraging signs from Abby within the past week as a result of more structured "practicing" with the spoon. We praise her for the good behaviors -- she loves that -- and we ignore the bad ones as to not reinforce those.

Everyone we've spoken to has really hyped up the feeding clinic at St. Joe's as being the best around. Needless to say, we had some moderately high expectations from this. So we got there and they took us back on time and the LNP took a history. We joked that we should just record Abby's (extensive) history and provide a CD to each medical professional who needs one. Side note: For all of you medical folk out there or those lay people who have experience with this, I came up with a little PDA joke. When asked if there are any cardiac issues with Abby, I say no, but that she did have a PDA. I then say that it either went away on its own or is now so big that no one can hear it. Ba-da-bum! I crack myself up.

OK. Sorry. So then they observe us feeding Abby with the spoon from behind a one-way mirror. We go through our regular routine, clapping when she accepts the spoon, and breaking eye contact and ignoring her when she refuses or swats it away. All in all, it was not one of her better performances. She did accept, chew, and swallow some Gerber puffs. Then they weighed her, measured her length, and a PT came in and did a brief evaluation.

After a few minutes of consultation behind closed doors, they came back with some recommendations. First, we need to address her recent constipation problem (TMI, I know), although her feeding/swallowing issues greatly precede her pooping difficulties, so we have a plan for that. They gave us a tip or two to refine the spoon feeding sessions. And they suggested we come back in a month.

And that's about it.

Huh?!?!

Good grief. And this is "The" place to go? Now I learned a while ago that feeding/swallowing difficulties are tough nuts to crack. It seems to be an art more than a science as there are just so many variables, but come on. I can't believe that we can't develop a more detailed action plan. I know it's one step at a time, but no one seems to know what the next step will be until we are there.

Do I have unrealistic expectations? If I do, please tell me. Mind you, I'd drive 500 miles a day to take her to a clinic if I thought it would help get us over this hump, but are we being selfish if we choose not to go back here as the trip doesn't seem to justify the benefits??

I think we are going to make an appointment with the GI doc to go over this evaluation and probably set up some kind of schedule with the private-practice speech pathologist and hopefully incorporate her guidance and advise into Abby's OT and Speech therapies.

Ugh.

Just very disappointed.