Germaphobe

Blood gas? Sounds crackly? Replogle? G-tube? CPT? BPM? SATS? Cyanosis? Gavage Feeding? NPO? PPH? RDS? Simply Thick?

Familiar with these terms?

If not then you probably aren't overly worried when your child gets a cold, coughs, or looks fatigued.


However if you are familiar with these terms, You have spent a good many nights in the hospital, you have longed to be at home, you have wished it was the way it used to be, and there is a good chance you start to worry when the kid who sits down next to yours sneezes in their face. You probably notice every sneeze, cough or snotty nose that comes within 30 feet of your child. Many of us who have watched our babies ribs when they try to get enough oxygen to their bodies get the label germaphobe, or are told not to worry so much. It can even cause tension in families or among friends.

When Alex gets a cold, just a simple cold, it increase our feeding time by 30 minutes because of congestion, and reflux, he has four feedings a day so each feed takes an hour, so when he is sick it takes four hours of our day to feed him. He also doesn't tolerate textures as well so his eating skills slow down. When he is healthy only two hours of our day is feeding.
Because he cant blow his nose, I have to wrap him up in a towel and suction his nose to help decrease the chance of a sinus or ear infection. This isn't pleasant for either one of us.
Because he is at a higher risk of aspiration, he could aspirate his congestion putting him at risk for pneumonia.
Add all these extra complications along with the regular therapies, doctor appointments, and daily tasks, it is stressful, and makes for a very long, hard day. Colds last 7-10 days, and post nasal drainage can last up to 2 weeks after the cold. So one simple cold has the potential of uprooting the already daunting routine for almost a month.

These are just Alex's increased issues with a cold. Children with special needs can have heart issues, lung issues, brain issues, that can land them in the hospital in a second if they get a simple cold.

So the next time you see a mom washing her hands for the third time in an hour, or wonder why they didn't show up at the family gathering, (you know with all those snotty noses). The next time you feel critical of these moms, remember who and what they are protecting.

Our Thankful day

Thankful

Two years ago Alex and I were preparing to spend our first Thanksgiving in the hospital, I'm thankful that is just a shadow in time. I'm thankful that now he is strong, healthy, and sooooo much fun!

I'm thankful that Noah is a leader, and Joel is sensitive to those around him.

I'm thankful that I have been to Italy 3 Times. I'm thankful I live in Holland.

I'm thankful for my boys friends.

I'm thankful for ALL my sisters!

I'm thankful that Alex's surgery of the year is behind us.

I'm thankful for a husband who loves, and takes equal care of the kids.

I'm thankful my grandma is here, and gets to hold Max.

I'm thankful for this smile

I'm so thankful.

What are you thankful for?

A lonely tune....

This glow bug was his favorite toy when he got it from his Nanny. He loved it, and loved to play with it in his bed before going to sleep. Not so long ago he began throwing it out of his crib, and would cry, sometimes getting so worked up he would scream. We would go in and get it for him, wondering if it was for attention, or delaying the sleep process. For weeks we would go in and give him his glow bug, and for weeks he would throw it back out, and cry. FINALLY, we realized the music was making him sad, and he didn't want to hear it in his dark room before going to sleep. I figured it out when he would play with it during the day, out of his bed, and I actually watched him play the music, and get so sad and cry when certain songs would play. He just couldn't tell us, poor baby, we kept putting it back in his bed:( Another reason to help this boy find his voice!

A real boy, one with no strings.......

Those of you familiar with the blog world have probably been following sweet Stellans story, and have rejoiced in his amazing recovery. SVT free, and alive!!!! AMAZING! I recently watched the family reuniting at the airport, and in a snippet of the interview his mamma said "its like he is a real boy, one with no strings". OF COURSE I know what she meant, he can now play, sleep, learn, and grow without the wall of SVT waiting to come crashing down on him. OF COURSE he was a real boy when he had his medical special needs, but it got me thinking about the way people perceive our kids with special needs. Yes, everyone knows they are real living breathing people, but because they may not interact the same, or may be "tied" down with equipment, or maybe only had a few short breaths on this earth, they aren't really living, and have a less meaningful life. How does the world perceive those with disabilities.......

I will admit that I understand what Stellan's mamma was saying, the "experience" we all hope for when we are pregnant isn't to watch our baby die, or have medical procedures and hospital stays, our experience doesn't include geneticist and their diagnosis. We hope for the typical "rose bud lip" experience, and for most people that's what "real" is. For some of us we experience another story, that is very much real, I do remember wishing in the NICU that I just wanted to do it all over again, I didn't want to move forward in this journey, I remember seeing pregnant nurses in the NICU and wishing for their story instead. Those days of wishing are long gone, this is our very real life, and, Alex is very much a real boy, and those "strings" called RTS, are not going to make his life any less real, in fact he is going to impact the world with his strings more than he would had he just had "rose bud lips"!