Monday, November 30, 2009


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

Monday, November 23, 2009


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?

Tuesday, November 17, 2009

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!

Monday, November 16, 2009

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

Those of you familiar with the blog world have probably been following sweet Stellans story and his mom MckMamma, 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 MckMamma 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"!

Saturday, November 14, 2009

Its that time again!

ICU smile, and a hug from Alex!!!!

I will be going to visit the NICU that was Alex's first home this December to hand out ornaments to the families who wont be at home this Christmas. The hospital is a very lonely place, nights are so quiet and lonely, but even worse than nights are holidays. Alex and I spent our first Thanksgiving in the hospital together, and it was one of my loneliest times. I have such a love for families with sick children, especially those in the NICU, and would love for you to all come with me! Since most of you wont be able to make the trip, you can still help!!!! Go to the store pick out a ornament that makes you smile, or two or three, and send it my way. I will deliver them on a Saturday in December, and your thoughtfulness will warm somebodies heart!

Click here to see my visit from last year.

Are you in????

Email me for details on how to get me the ornaments.

Thursday, November 12, 2009

Finding his voice

I remember very clearly the doctor telling me all that I should expect with RTS, and the worst of it, the one all of us parents with an RTS child fears probably the most is speech. I didn't get it, I ignored what the doctor said, and thought to myself of course he will talk, he will even talk on time.

Two years down the road we have no words, we have no signs.
Tuesday night Alex hurt his foot, at first I thought he had just scared himself because he fell, and that is why he was so upset, but instead he had hurt himself, but was unable to tell me. I only figured it out when he was still grumpy after nap, then I had to investigate. Finally figuring out that his foot hurt. He was so upset and crying because he hurt, the only way he knew to tell me was to cry.

I'm not the same girl in denial I was in the NICU, but I'm still very hopeful for communication, and very discouraged that we have none.

I'm pretty good at anticipating his wants, and needs.

I cant help to wonder what he is thinking, he knows we all talk to each other, he understands what we are saying, does he wonder why he can say things, does it make him sad. How scary it must be, how unbelievable frustrating. Is Max going to have his first word before Alex? What if something hurts, what if he is feeling sad about something, but all he can do is cry? My voice can only go so far for him.

I have to help him find his own voice.

Tuesday, November 10, 2009

My mouse

I can never get this child to put food in his mouth himself, he throws it as hard and as far as he can when I put food on his tray, but put it on the floor.........

Sunday, November 8, 2009


The good news is Max is starting to be entertained by this that and the other for very short periods of time, but at least there are periods of time. The other good news is that he is sleeping for much longer stretches at night. 5 hours and then up for milk, down for about 3 more hours! The bad news is he no longer likes his sling, but wants to be carried around, or bounced almost constantly. He would be a great only child. Its just that hes not.