10 days later

And where have we been you ask?? *sigh*

We have been around. It has been really busy so I am sorry that I haven't updated. The first weekend that we were home it was Easter and Trevor, my parents and my Aunt were all here. Joshua slept the WHOLE time. It was later that I discovered that when we removed the wound vac....we didn't make adjustments to his meds. He was completely snowed. I made a wien on Monday and he perked right back up. We had also changed his formula so I guess he wasn't always sleeping. He woke up to puke! UGH. It was pretty rough. That combined with meds every 2 hours....I was WIPED.

We now have the med schedule under control and he is feeling so much better. I am still tired as I have to get up every 4 hours at night and I have been under a lot of stress with work. Only a few more weeks left. I am kind of looking forward to it. Joshua has several appointments each week so I feel like we are always on the go.

I received a call today from the Transplant Coordinator and we do have to go back in on Monday for a repeat echo. This last one from Monday has changed so they want to take a look and see what it going on. It appears to be some thickening of the walls of his heart. They have not ruled out echo tech error so I will let you know next week. He had blood work and all seems to be in order. His cyclo level is still 230 and needs to be 250 to 300 so we will go up again. Not sure why the last increase didn't have any kind of impact on his level. Always a mystery this kid!

A week in review:

*Joshua can roll over to his tummy. (Although not always thrilled once he gets there)

*He now says "mama" :-) Usually when he is really upset...it sounds more sad than anything!

*He took his first car ride in almost a year. He LOVED it.

*Joshua does NOT like you to laugh with (or at) him. A couple times I have busted up and it is usually followed by a HUGE frown and dramatic crocodile tears.

*Joshua has a Little People train that has a person, a giraffe and a tiger. I couldn't think of a giraffe noise to I made kissing noises with it. Grandpa likes to make the tiger growl and "eat" his arms and cheeks. Joshua likes to make the tiger growl and likes to make the giraffe kiss the tiger. :)

Joshua is getting so strong and playful. It is fun to watch him 'turning' into a toddler. He has been eating puree's (mostly tastes) and can have honey thick formula. He showed some signs of silent aspiration at his swallow study. We are working hard to get him to enjoy eating. I am glad to report that he is over his fear of spoons!

Here are some pics to enjoy.

We went on an evening walk to get some take out supper.

This is after a full hour of PT with Keren. She really worked him out! He played HARD. He made it 10 minutes before he fell asleep.

Cruising in the car. I think he looks SO big in his car seat.