Gav threw up blood this past weekend. He has also started to throw up when he is sleeping. Luckily, Jay and I heard him and were able to get in there and get him on his side. It has been scary. I feel like I can’t sleep for fear I may miss something. He is just being pushed so hard and his little body…I just feel for him. It’s a hard road to watch, let alone travel. He’s now our littlest roommate so we can have viewage 24/7.
We’ve also had to increase his injections for his blood count to every four days. So he gets his daily growth hormone and now he gets his other injection bi-weekly. He cries the instant he sees me start prepping the needles.
On the plus side he is still gaining weight, which is what is bringing us closer to transplant. I have to just keep in mind that transplant is our ultimate goal. We NEED to do this for him to survive. There are no other options here, this is the only way.
In fact, the most exciting news to date is that they are going to start working me up to see if I can donate my kidney to Gav. I am very excited, now I feel like we are finally honing in on transplant.
We have been lucky, things for Gavin could have been a lot worse. He could be experiencing so much more pain, but it’s hard to accept that he has to experience even an ounce of pain. It’s really a battle to inflict all of this on your child when he looks and seems to be fine.
Gav is beginning to sign some words. OK, so not the ones that I have been working on teaching him (and the ones that Lauren reminds me to do when I forget). But he’s signing none the less. He hits his head when he is excited and wants something (so much for pointing and/or ‘more’). When he is hungry instead of signing ‘eat’ he climbs up and starts eating my hair (gross). So all in all he’s not exactly doing what I am training him to do, but he’s signing none the less and getting his point across(: He is also now able to put himself from being on his tummy into a sitting position and is quite pleased with himself.
Lauren has started to scrub in and wear her mask at night when it is time to hook Gav up. It’s very endearing that she wants to be involved in her brother’s treatment. Also a little sad. I know when she’s happy when she’s singing her songs. She is the little singer in the house.
We try to make things normal, but I can’t help but wonder what all of this does to her. I just pray that she and Gavin don’t remember all this. When he throws up, she comes and gives him a little kiss on his noggin and tells him that she loves him. It’s been a rough adjustment for her with him getting sick so much. Things aren’t as “normal” as they were and with all the added cleaning and laundry it leaves less time for me to have one on one time with her. And I am admittedly not as calm as I was before. Luckily, she has her Polly Pockets and she escapes into their imaginary world.
Thursday was nice, as we managed to get in a good snowman build before all the snow melted (no disappointment there)! Lauren reminded me of how much fun it is to step on a little panel of ice and watch it crack. She had fun eating the snow (gave firm warning: only white snow) and the delight of putting together a snowman’s face (it was hard for her to give up the baby carrot because that’s what horses eat and she’d really like to just eat it too, please please please…okay).
When the snow melted, we raced boats with the neighborhood kids in the streets. It was so sweet to watch these little aluminum foil rafts streaming their way to the gutter and getting swiped back up to safety just in time.
We also took advantage of the one day heat fest (hey anything above 60 right now is like tropical) and went to the zoo. It was so much fun. Lauren is a regular zoo expert since she and her Grams go weekly and her favorite was the new giraffe exhibit (it is really amazing, you are so close to them). Gav started clapping when he saw “Lipz and Tommy” the orangutans. It was hilarious!
Children are really awe inspiring. The way they view the world, the way they love and laugh and take each moment in. They are the reason that hope is eternal and love is ever lasting! What a delight!
Regarding your concerns about Lauren and the affect Gavin’s treatments will have on her long-term:
I’m not an expert, but I did grow up in a somewhat similar situation. When I was 6 1/2 and my brother Mike was 3, our brother Scotty was born. He was 3 months premature and weight 1 pound 14 ounces. These days a birth like that may have a happy ending, but in 1979 it typically didn’t. Unlike Gavin, the problems Scotty was born with are incurable, and from the time Scotty was born we knew he’d never lead an even close to normal life. Also at this very time my dad left, so my mom was raising the 3 of us alone and trying to work 1 full- and 2 part-time jobs as well.
All of childhood Mike and I can remember included Scotty. He had seizures, operations on his skull to insert and fix his shunt, eye surgery, multiple hip surgeries, etc. But the only ‘bad’ moment I can remember was when I was about 8 and my friend’s dad came running to the park where I was swinging on a swingset to tell me an ambulance was at my house. When I got home my mom, Scotty and Mike were gone. None of the neighbors were sure what occurred, so for awhile I cried on the porch not knowing what happened, or to whom it happened. (It turned out Scotty had a bad seizure, but he was OK.)
My memories of childhood are good ones. It didn’t feel ‘abnormal’. Many people in the community supported us. Teachers at my school obviously cared deeply about me and my family. Yes, as kids we were probably exposed to subject matter and thoughts that most would hope their kids wouldn’t have to endure. But it really was ok. Scotty was, and is my brother, after all. I was always proud that I was able to help him, by singing songs or helping with his baths. As an adult I know it’s helped make me accepting of all sorts of disabilities and differences. My brother Mike too – he was in the Peace Corps, and now lives in Washington DC working for a company helping people living with HIV/AIDS in Africa. Now I live in Madison, in part because my brother Scotty lives in a home here. And I still love how he smiles when I sing songs to him.
I bet Lauren’s okay. It sounds like you guys are giving both of your kids a wonderful, loving, happy life. And Gavin’s getting closer to having a transplant every day! Thanks for all your updates.
Good luck on your testing for a match for Gavin. I hope everything goes well for you and your family. I bet the kids really enjoy the zoo. That is such a neat place to go and leave your troubles behind even if it is just for a moment. Hang in there. You all are in our prayers. Thanks for the up-date.
Hi Jay, Jill, Lauren and Gavin!!!
We just wanted to let you know that we think about you all the time and we are both excited about the match testing. That’s just one step closer!
Jill, I know you said that you hope neither one of the kids remembers any of this, but I don’t believe that this experience is all bad. I remember, when Ronnie was around Gavin’s age, he had a lot of breathing problems. My mom had to give him treatments all the time. Now, you would think that seeing your little brother hooked up to a machine might be scary. However, I believe it brought us (me and Ronnie) closer together. I developed a great sense of pride for him and I wanted to protect him from anything that would cause him harm. As I look back on it now, I didn’t see him hooked up to the machine, I just saw him as my baby brother:) If Lauren remembers this, I believe she will look passed all the negative stuff also. You and Jay give them so much love and such a great home and that’s the only thing that they will dwell on.
We love you all very much! Hope to see you soon!
Joanna & Lance