Summertime

Hurry up.. and wait

Al quickly got readjusted to being back home. He got reacquainted with all his toys. He was sent home on oxygen, milernone continuously, feeding tube for the yucky formula, and of course lots of oral meds as usual.

The milernone meant being attached to a very stylish fanny pack 24/7. The line went into his thigh and ran into an IV pump that was kept in the fanny pack. The medicine came in small bags that had to be switched every 48 hours. A home care nurse came over every week to change the dressing on the line and keep it clean. Having a line right in his thigh was kinda annoying for such an active wiggly little boy.

Although not quite as cool as all the nurse friends, Al got used to being with just mom and dad instead. Dad quit his job in order to spend all day with Al while mommy worked - usually at home.

Worked hard on eating again. With getting most of his nutrition from the yucky formula by tube, Al just worked on his spoon feeding. He learned how to eat all by himself. He ate lots of yummy stuff to keep up his skills and remember that eating is fun!!!

Al would need to stay on the yucky formula until his transplant.

One of the favorite foods.. blueberries. Mom made a concoction in the blender from fresh blueberries and bananas. He gobbled them all up and had lots of fun getting to make a mess.

While he was gone, mom and dad had gotten Al a new saucer toy. At first his legs were a little too short but he grew into it and loved all the toys on it. Al got to meet friend Sarah and hang out at the pool. Unfortunately he didn't get to go swimming then because of his line but he had fun sitting by the pool snuggling with everyone.

Bath time was fun. It had to be a sponge bath because of the broviac line. Tried out the G diapers for awhile while mom was contemplating whether to make the jump to try switching to cloth.

The Move

So just as he was getting settled.. mom and dad moved. But it was a nice change. Al finally got a room of his very own and a bathroom. Not that he used either. He continued to sleep in mom and dad's room anyhow.

Al got used to the new comfty house. Everyone was on edge all the time for the call to come in for the transplant.

Any time, a call could come in that there was a donor and he'd have to be at the hospital within an hour to be ready. The estimated wait time was about 3 months. There were lots of kids at the hospital at that time waiting.

Al had fun spending quality time with daddy!

Diapers, diapers

Mom finally decided on cloth diapers. After much research and trying out some sample packs, she decided on the Bum Genius 3.0. They are awesome pocket diapers that hold up well and are easy to wash and affordable and come in lots of cute colors.

Al's favorite toy to chew on - the oxygen cannula. If you put it in your mouth just right, you can make some fun sounds and blow some sweet bubbles. He was constantly chewing on it and mom and dad kept having to readjust it.

And, one of the favorite books - Water Water Everywhere. Its a baby Einstein book about all the different forms of water.

Throughout the summer, Al saw his OT Ann and his PT Sarita to help him with regaining his strength. One day, Ann brought a cup and some blocks. He had lots of fun with the blocks and shaking them in the cup and putting them in and taking them out.

And he got a little stronger - learning how to sit up almost by himself. He made mom and dad and everyone else very proud.

Al got big enough to start sitting in his bumbo chair to play!

And he decided to start pursuing an art career.

Things started looking up. Al had a pretty fun summer, for having to be cooped up a lot and tied down with a bunch of cords. As September came around, it got a little more tense waiting for the day to come when the transplant would finally happen.