The Past, Present, & Future

We love the zoo!

It is finally time to update everyone on Alexander. Summer has come and gone, the school year has begun, and Halloween is right around the corner. Alexander is doing well. His energy level is getting better every day, he's learning so much every minute and continuing to thrive over all.

Next Saturday, October 15th is the American Heart Association heart walk in Santa Clarita. Wes and I will be walking in honor of Alexander. If you live nearby and want to join us, click on the link.  If you can't or won't be joining us but want to contribute by donation, click on the link. :)

Santa Clarita Heart Walk-October 15th-CLICK HERE

First day on the School Bus :)

Currently, Alexander is attending preschool 4 days a week, for 2.5 hours each day. He is riding the school bus to school but because is only on 1 tank of oxygen at school, which last 3 hours (because he is still requiring 3 liters per minute), he does not take the school bus home. He has his good days and bad days-but overall, he seems to be enjoying it.  He never wants to go home when I pick him up. :) When he's not in school, he's in therapy (speech, occupational, or physical therapy). He just had his follow up cardiology appointment and there is now a descion on what the future holds.

A few months ago, we learned that it would not be in the best interest for Alexander to have the Fontan (the third surgery of the series). If he were to have it, his quality and quantity of life would not be good. This is due to pulmonary pressures coming from the heart going to the lungs being high and his heart not pumping well. As of July, Alexander has been listed for a new heart. He is considered a status 2, as he's not 'critical'. So we wait. We do not know how long this wait will be. It could me days, weeks, months, or years. We hope that if it's years, Alexander can be weaned off of the his oxygen and wait for a new heart without it (how that would make things so much more simpler). We were told that his name has come up when hearts were available but he was just not a good match. This decision is a positive and not-so positive. Positive being he will have a new full functioning heart with all 4 chamers. No more pace maker, no more oxygen. The not-so-great news: he will be on anti-rejection meds for the rest of his life. If he were to miss a day or two, his body could begin to reject his heart-it is that quick. He also needs to try and stay healthy; getting sick makes his body and heart to have to work harder, so we will have to continue to be cautious with germs.

Signing Time Moment with Rachel & Hopkins :)

During his recent cardiology visit, we learned that Alexander will be returning to the Cath lab TOMORROW. You are now probably thinking:
"Wait. She said he was doing fine." and he is doing fine; this Cath is just routine for transplant patients. United Network of Organ Sharing (UNOS) requires updates on the organ's function every year. As much as NONE of us want him to go back into the Cath lab- it just has to happen. His cardiologist knows that when Alexander's heart is touched in any way, he takes two steps backward. Her plan tomorrow will be to get the numbers that UNOS needs and then get out. She is not going to do any sort of intervention, unless there is something that must be fixed (which is probably not the case).

As we head into flu season, I want to remind you all that if you or your children are sick-stay home.  A little runny nose or cough could be nothing to you but that person you walked passed in the mall or are standing behind in the check out line, it might mean something to them.

Please continue to pray for our Superman. His procedure is first case tomorrow morning (7 am) and he will be staying overnight for observation. Please pray or send positive thoughts that Alexander's Cath is uneventful, that all goes well after the procedure and that he can come home on Tuesday. I will update you all tomorrow on how his procedure goes. Thank you for continuing to follow us along out Superman's heart journey. <3

Just another day at Target