We are approaching 5 months since Alexander received his new
heart and it still feels like a dream. It has been a little over 2 months since my
last post and I don’t really have an excuse to why it has taken me so long to
update everyone. Truthfully, there hasn’t been a lot change, which is GOOD. I was told by a very smart man, that everyone who reads my blog doesn’t just want to hear the negative news on Alexander, they want the positives too. So this is here is what has been going on:
A littler over 2 months ago, our boy with the new Superman Heart celebrated his 4th birthday! It was a fun and memorable one. His birthday celebration consisted of having breakfast with Disney characters, most importantly Mickey-who he just LOVES. The pictures prove how much he was so happy to meet Mickey Mouse!
A few days after his birthday, he went to the Cath lab for a
biopsy. The results showed minor rejection of his heart, but it was nothing that his
current medication couldn’t help. He was the first case, taken at 7:30 am and done by 8 am.
We were home and exhausted by 11 am. FIRST TIME EVER for Alexander to be
outpatient. His next biopsy will probably be in June.
I continue to stay busy with taking Alexander to his ongoing therapy appointments (physical therapy at CHLA; speech therapy, occupational therapy in woodland hills) and then Alexander sees his academic instructor at the house; with each therapy session happening 2-3 times a week. Don't forget the doctor appointments too. The last few transplant appointments have consisted of a decrease in dosages with his medications, continuation of monitoring his blood pressure (it likes to stay on the high side), keeping him hydrated (his kidneys are working harder because of the anti-rejection medications), and keeping him healthy! Alexander has continued to show Wes and I what a
ball of energy he is and how much he wants to learn. We are hoping that within the next few weeks, therapy services will start in our home, which means less driving.
As I said, not much has changed. Overall, Alexander is
getting stronger, learning to ride his scooter, and getting faster on his bike. His new favorite activity is playing with his Lightening McQueen remote control
car. He’s getting pretty good at it too.
I still haven’t been able to return to work due to the multiple therapy sessions Alexander is requiring right now, but I don’t mind right now. There are morning when I wake up and hate the idea of being in the house or on the go to the next therapy session, but there are many other times that
trump those boredom moments. Those are the days that I get to see Alexander growing, trying
his HARDEST to communicate with me, to independently complete a skill that
we’ve been working on every day and see the smile he gives when things just
“click”. He is still not talking, but we are hearing more vowel sounds and his
voice is becoming louder. It has even gotten to the point where we actually
have to ask him to have a quiet voice while inside a building. First for
everything I guess. J
Now that Flu Season is over, we are hoping the transplant team will give us the okay to enjoy more outdoor activities such as the zoo or maybe even Disneyland! We have to continue to stay cautious of germs because if he were to get sick, he could end up in the hospital. The transplant life has an entire new set of worries for me. The signs of rejection can start with his GI tract. Something that could be a minor stomach bug could actually be a sign of rejection and because he has a suppressed immune system, his body will be working harder to fight off any infections. So any little illness, his body is worker harder to fight. With that being said, Wes and I must be cautious in what we allow Alexander to do for fear of getting sick, but at the same time, allow him to be a regular kid and start exploring what is out there beyond his bubble. The whole point of a new heart is for Alexander to continue to live and experience the things other kids is or has experienced.
So until the next update, here are a few pictures. P.S. We took him to see the Easter Bunny right before Easter... now that he a healthy heart and no need for oxygen, the Easter Bunny experience was a bit different this year...
Play time with friends!<3
