Because He Is So Stylish

Isaac is such a stylish boy, but I love his hair the most. He looks good in so many different hairdos.

"The schoolboy"
"The slickback""The bed head" (my personal favorite)"The what in the world are you doing to my hair now Mom."

What do you think? Aqua glasses or green?

Upcoming

We have been struggling with crusty eye in Isaac's right eye lately. it appears that when he started retaining fluid with the lasix wean, it got worse. He sometimes sleeps with his eyes half open, so that may be contributing to the crust too. Last week we saw the Ophthalmologist and she prescribed an eye ointment that we are applying 4 times a day for 2-3 weeks. It seems to be helping so far, but Isaac is good at letting us know that he doesn't like it! We will see the Opthalmologist again in 3 weeks and she will determine if he needs to have his tear ducts reopened or if he just has inflammation. If he needs the procedure done, it will take place on August the 26th. We will also have the ENT on board that day doing a scope of his airway and replacing his ear tubes. The ENT discussed the possibility of having his adenoids removed. Personally I don't want that done unless she can see that there is a definite problem. As I mentioned in previous posts, Hubby and I are trying to limit the amount of procedures done to the boy. There are just too many risks involved.

It has been hot, hot, hot around here. I took Isaac outside yesterday to watch his sister ride her bike, but I could tell that he wasn't too thrilled with the heat. Tomorrow the nurse will be working a longer shift so that I can take my girl to the waterslide park. I turn into a kid around waterslides so I'm looking forward to it!

A Trachaversary And A Homeaversary

I can't believe it's been 3 years since I heard the words from the ENT "we are going to have to trach him." Did I really know what those words meant for our lives and his? How do you prepare for something like that? After he got the trach though he showed some drastic improvements and we were preparing to take him home after 4 VERY long months in the NICU. Before taking him home, we felt that we needed to prepare Autumn. After all, this wasn't the ideal situation we had hoped for when coming home with her little brother. There would be nurses in and out of the house, several trips to the hospital and dr and stressed out parents. We also explained that he would have a disability in words that a 5 year old could understand, but that we would love him anyway. That his ear that rotates funny is shaped like a heart because he loves her. When the day came to take him home, she wanted to hold him, tubes and all. She was the proudest sister ever. Still today she's such a good sister to him and loves him to pieces!

Laughter...How I Survive It All

There are some days when life gets crazy with the boy and humor is the only thing that gets me through. There is a reason why Isaac's name means "laughter." God knew that I would need it! Some days I need a good laugh more than others and yesterday was one of those days.

The nurse and I got ready for Isaac's Neurology appointment in the morning. I combed my hair and inhaled my coffee as fast as I could. We loaded up the boy and all of his medical equipment. I double checked the diaper bag to make sure that we had everything. Emergency trach.....check, oxygen tubing.....check. We arrived at our destination and I looked back and discovered that I forgot the stroller! I couldn't believe it!

Imagine if you will trying to carry a suction machine, oximeter, oxygen tank, feedings, a diaper bag, a purse and a 25 pound boy. Imagine that the nurse has a 25 pound weight limit so there isn't very much that she can carry. Imagine carrying a very wiggly 25 pound boy who almost fly's out of your arms as you are holding him in the elevator. Imagine walking up to the front desk at the Dr's office and discovering that your son just had a blowout and your arms are covered in poop!

I can't say I was laughing very much at that moment, but at least I could laugh about it later.

I had another moment where humor was needed. Last night Isaac's bi pap machine had a leak in the tubing. The RT had to talk me through a leak test over the phone. When I told her that it sounded like a jet plane was taking off the nurse started singing "I'm leaving on a jet plane." I had to laugh!

More Park Fun!

Since Isaac wasn't needing as much oxygen yesterday and it was a beautiful outside, we took him to the park. Isaac is about to take off on the rocket ship, but he's not quite sure if he wants to touch the handle bars.
Now that my peeps are singing "row-row-row the boat" this is fun!
Going down the slide with Mama!Going down the slide by myself, but I'm not sure if I like this.
It was a good day! Time for a nap!

Smiles

Seriously, I can't help it....this boy makes me smile!
Another thing that makes me smile......excellent Sat's with no oxygen. I believe we are back to our previous respiratory status (finally).
Isaac's Glucose and Potassium levels are looking better today too. Hooray!

Finding Balance

Since we had to increase Isaac's diuretics last week due to fluid retention, his Potassium levels are extremely low. So now we will be increasing his Potassium dosage to more than a monkey has after eating bananas all day. For almost two years we have been playing this balancing act with the Potassium verses the diuretics. No one really knows for sure what causes the swelling. All of his labs say that he doesn't have kidney, heart or liver failure. The doctors shrug their shoulders and say he probably has lymph edema.

Convinced?

Not really.

Do I stress out about it?

No, but I'm researching it just a little more.

Today his labs are showing that his blood sugar levels are extremely low.

Another mystery?

I really hope not.

On a positive note, my Aunt Karen and Uncle Dave from came over last weekend for a visit. They are from California. Isaac's Grandpa Billy, Grandma Jean and Cousin Chelstie came over too.

Here Isaac is getting some quality snuggle time with his Grandma Jean.
Aunt Karen bought him this really cool toy called an "Eye Spy Bag." Since Isaac is really sensitive to loud noises and he likes beans and crinkle sounds it's the perfect toy for him!

An Update And A Happy 4th Of July

Happy 4th Of July!!

We've been busy, busy around here....lots of appointments and enjoying the summer when we are not going to an appointment. Autumn just earned her red black belt, which means that she is 2 belts away from being a black belt.....look out!! I'm so proud of her!
Isaac didn't do as well as planned with the lasix wean. He gained close to a pound in 2 weeks in just fluid alone. His lungs got a little junkie and he's been needing more oxygen. The Pediatrician put him back on a potassium sparing diuretic, so hopefully that will help him and we can go back to his previous respiratory status.

Next month he's going to have a bronch and a look at his ear tubes. The ENT also discussed the possibility of having his adenoids removed during that time. The Opthamologist may also re-open his tear ducts, since his eyes have been really "goopy" lately.

Other than the medical drama he's a happy boy and is rolling around everywhere. I almost have to childproof the living room because he sometimes disappears. A couple of weeks ago he rolled off the table right after I gave him a bath and gave me the scare of my life! Luckily he was OK.