Monday, July 10, 2006

Okay, first things first... Please say your prayers for Ashley. She is fighting again, recovering from having her appendix removed. So, not only did she have a transplant one year ago (July 5, 2005), a liver transplant last month, but her nausea brought her into the hospital earlier this month only to find she had appendicitis!!

Ashley is an amazing young woman. At 18, she's been through more than her "fair" share of battles. I spoke with her mom, TuWana, and we both agree that this is enough. She has definitely proved her strength in body and spirit. And, TuWana has been with her every step of the way. I can only hope that I would be that strong.

Second story... Benjy is in need of our help in another way. Of all of the things to worry about throughout this whole treatment of the transplant, the last thing you want to stress over is money. Benjy desperately needs therapies to continue to build physical and motor strength. However, the insurance company, Aetna, has ceased nursing care and therapies for Benjy. His mother and father, Elizabeth and Josh, are asking anyone and everyone to fill out a very simple form on-line that will generate a letter to be sent directly to the CEO of the company. Please access this link to do so. Trust me, it takes seconds to do, and will help for a lifetime: www.dearaetna.org

As for Frankie... he's doing very well, so long as we keep him out of direct sunlight. He's my little vampire, it would seem. As soon as sun touches his skin, a rash develops. If the creams that we use were instant solutions, I wouldn't mind so much, but truth be told, the creams take roughly 2 weeks to show any signs of improvement. This is even the case if I slather him with 50 SPF and put him in clothes from wrist to ankle. We are in the process of ordering sunblock clothing to help out with this as he loves to be outside and we don't want to have to miss another summer.

This Thursday, July 13th, Frankie will be having his lumen removed and a port placed. We are very excited for this surgery. And, once he heals (4-5 days), I can give him a bath in a bathtub!!! Talk about exciting! ha ha ha... trust me, even inside the house, this little boy can get dirty from head to toe in paint, crayon, chalk, food... you name it! It will be nice to really scrub him clean.

And, once I get the sunblock swimsuit, we may even get a chace to put him in my dad's pool. I put his toes in last weekend, and I think I teased him more than anything. He really wanted to jump right in. But, we need the "OK" from the doctors and the proper sunblock coverage. Thankfully, the pool is shaded at the latter half of the afternoon. I'll be sure to take some photos and post them on the website.

Which brings me to another topic... I have a cousin, actually a first cousin once removed, that lives in England. He is very good about reading up on Frankie (Thanks, John!) Anyway, per a conversation with my mom the other day (she's in England right now) I'm to update the site and post new photos... color photos! ha ha ha... well, rest assured, I'll be working on my newly appointed task this week. And, John, if you're reading this, you're not the first person to ask for more updates and updated pictures! I'm just giving you a hard time. Thanks for keeping up with us over the pond!

For me and Frank... Frank is busy at work and school. And, I've had my 4th golf lesson this past Sunday. I'm getting pretty good, but I have this fear of making a divot. It's a weird thing... I just don't want to ruin someone's grass... even if it is a golf course! And, I continue to challenge myself with my knitting. As I wrote a friend of mine... I'm seconds away from owning 40 cats!

Thanks for keeping up with us and wishing Frankie and his friends well, sending prayers and hugs. They do not go unnoticed nor unappreciated.

Well... back to feeding the 3-foot tall, crazy-haired vampire...

Wednesday, July 12, 2006

Tomorrow, Frankie will be going into surgery to have his lumen removed and a port placed. His surgery is to take place at 7:30am, but we have to be at the hospital by 6:30am. The procedure should only take about an hour, and then another hour or two for recovery. After the surgery, we have to stop in at the clinic to show his new doctor, Dr. Beardsley, and Carolyn (nurse practitioner) his bare chest! Hopefully, we'll be home by early afternoon.

Please continue to say your prayers for Frankie and all of his friends... Ashley is still in need of healing prayers and we have a new girl on the transplant block that is in need of prayers and healing as well. Her name is Morgan. As I'm typing this as a last minute update tonight, I'll be sure to add her link to the right at the next update... but for now, you can read about Morgan's story at www.caringbridge.com/visit/morganfowler.

Thanks to everyone for your continued support of Frankie and our Transplant families.

Sunday, July 16, 2006

Hi, everyone! Sorry for the delay in updating, especially after Frankie's surgery. Everything went fine, but my car should now be dubbed "The Puke Mobile." More on that in a little bit...

So, Wednesday night, I set my alarm to wake us up at 5:15 so we could be at the hospital by 6:30. Knowing that we would have to be up and functional, I decided to go to bed a little earlier than normal, normal for us is around 12:30am, so I think I fell asleep around 11:00. At midnight, Frankie was making some noises, not unusual, and I woke up thinking it was time to get up. Much to my relief, I had 5 more hours of sleep ahead of me.

While in my peaceful slumber, something told me to open my eyes. I can't tell you what, exactly, but it was strong enough to make me wake up and look at the clock. The clock beamed it's red lights at me... 5:45. It took a few seconds to realize we had overslept. But, why hadn't my alarm gone off??? Ah yes, the classic Cynthia move... I set it for 5:15PM, instead of AM. Thankfully, my internal clock was working, although on Filipino time. That's an inside joke, sorry... just means I'm late. But, since I'm half Filipino and half British (and a product of my mother's need to be early everywhere), I'm usually on time for things. I digress....

After literally running through the shower and getting Frankie up and ready, we were in the car and headed to the hospital at 6:01am... Not bad. For Pediatric Surgery, they give you a one day complimentary Valet pass. So, we didn't even have to account for parking and walking time once we got to admission. We actually had to wait 5 minutes to go up to the third floor, as they weren't ready for us.

Once on the third floor, it was only a few minutes wait for us to be called to an exam room where they weighed and measured Frankie. We also spoke with the anesthesiologist, OR nurse and surgeon. They gave Frankie a sedative through his lumen, and he just started giggling. It was pretty funny. He just had this huge smile on his face as the anesthesiologist took him away to the OR. This was the very first time he went without Frank having to go with him. He went smiling... our little boy was growing up.

Surgery should have taken roughly an hour, but after speaking with the surgeon, post-procedure, they had difficulty putting the port on the right side, so had to change it to the left. And, when we went in back to recovery, he was a little bloody on his torso and it was weird to see his chest without the lumen coming out of it.

He recovered from anesthesia pretty well. He drank some juice and Pedialyte before we were off to clinic. Dr. Beardsley and Carolyn wanted to see him after, just to check him out. While at clinic he ate an entire bag of cheddar goldfish... in hindsight, not the best idea.

Just as Frank was putting him in the carseat to go home, he vomited everywhere. And, unfortunately, he waited until he was in the car to do it. He could have vomited while we were waiting for the valet to bring the car, but no... apparently, my car and his carseat is the perfect place to vomit. And, as we knew it was the combination of coming out of anesthesia and the bag of goldfish, we cleaned him up as best we could and drove home.

After a three hour nap, he was fine, but extremely sore. All he wanted to do on Thursday was sit and watch his videos. This is unusual for him, as he usually watches his videos while jumping on his trampoline, or running back and forth between his playroom and the TV room. So, for him to just sit on a couch, we knew he was still hurting.

I'm sorry to write so much in this update, but I know there are some of you who were interested in him and his surgery. He's doing so much better, running and jumping around. And, when we pick him up, he doesn't whimper in pain that much anymore. He had his first bathtub bath in over a year last night. He enjoyed himself, splashing away. And, once the steri-strips come off, he'll be able to go in a pool.

I did take some photos, but I haven't downloaded them to my laptop yet. In fact, this is the first time I've turned on my laptop since Wednesday.

Take care, everyone! And, thank you so much for your continued support of Frankie and his friends.

Thursday, July 27, 2006

Good morning, all! It's about 7am on Thursday morning, and we've been up since about 5:15am. For whatever reason, Frankie woke up bright-eyed and bushy-tailed. I wish I could say the same for me. Thankfully, every Monday and Wednesday night, I set up coffee to be made at 5:45am for Frank and Luz (Frank's co-worker). And, even though Luz is on vacation this week, I did it anyway... it's not like the coffee won't be enjoyed!

Frankie is doing well since the operation. He was definitely sore for a few days, but now he's fine. However, when we went to clinic last Thursday, we had a difficult time drawing blood from the port. Debbie, one of Frankie's clinic nurses, had to access his port twice before it worked. Frankie handled it better than any of us. He fussed a bit, but that's normal for him when he's being constrained.

His FK level from that draw was low, so Frank, Frankie and I had to go in on Tuesday to have it rechecked. The same thing happened with the port. The nurse couldn't draw blood. After some maneuvering, it was discovered that Frankie really needs to be laying down, or at least mostly horizontal, with his chin raised away from his chest. But, once the needle is in, he's fine.

I've updated the pictures page (yes, John, and they're color photos, too!). So, you'll get to see Frankie's lumen for the last time! And, then of course, some very happy pictures of him enjoying his train set.

So, my golf lessons are going quite well. My pro is very forgiving of my, eh, verbal reactions to some of my shots. But, I'm very excited about my progress. But, I think I'll just be a professional driving range player! ha ha ha

More news on the Frankie front... Speech therapy is going very well. We had Physical therapy here a couple of times (before the end of the school's summer session) and she was able to give me some very good ideas on how to incorporate the exercise ball to keep his hips mobile. Occupational therpay came to do an evaluation for the fall session. I'm not sure how that eval went, but when her eval and the PT eval is ready, we'll be having another meeting with the school system to build a plan for Frankie's fall school year. I'm just hoping he'll be able to go to school instead of school coming to us.

And, we just started to try to potty train him. It's quite the daunting experience. But, at least we're making an attempt. I don't expect a lot right now, I'm just trying to get him used to the concept. The problem, or rather the challenge, with Frankie is that he doesn't feel uncomfortable in a dirty/wet diaper. So, it's hard to 'convince' him that he needs to use a toilet. But, we'll keep trying (without stressing him out).

I hope this update finds all of you well, happy and enjoying your summer as best as possible!
Hugs, love & prayers across the miles,
Cynthia, Frank & of course.... Frankie