Carpe Diem

S~Ever since Clare was diagnosed with Williams Syndrome, each doctor's appt and hospital visit has always resulted in more harrowing news... except today! As we prepared for this cath, we were expecting the worst. Clare seemed to be getting much worse each day. So we were surprised when we got our 11:00am update, expecting one more update after that, and the nurse said Clare was done, and they did not have to put in any stents! Surgery is still on for next week, but for now, we are done. It was so nice to finish the procedure and not have doomsday hit us. Teresa and I were brought to tears because we did not have any bad news. Is Clare on the upswing??? Well, it is too soon to jump to that conclusion (especially with the dreaded surgery coming up) but for today, she did well. She does not need to be in the ICU and her procedure went beautifully. So we are living for today... Carpe Diem!

Clare's Angel

My aunt Sara is an artist who has created a line of prints called Garska Girls. Garska Girls are collages that are made of magazine images pieced together. These thousands of bits and pieces have come together to create a collection of beautiful ladies. They truly are stunning.

Sara created one especially for Clare that she has named Clare's Angel. It was a project Sara started when Clare was born. Once she heard about Clare's diagnoses, Sara decided one of the purposes of selling prints of Clare's Angel was to donate the proceeds to defray the costs of Clare's medical expenses. We thank Sara for her generosity in this project.

You can view Clare's Angel and other Garska Girls at Sara's website: www.saragarska.com
If you interested in ordering a print of Clare's Angel, you can do so via the website which you can access from our website by looking in the title bar on the right of the web site and click on "Clare's Angel".

Clare's Angel, created by Sara Garska 

Surgery Date

Clare's open heart surgery is scheduled for Tuesday, November 8.

Everyone's in bed (why aren't I???), and I wanted to update the blog. I have been trying to think of something to write that's not depressing, but words are failing me. This is such a scary time for us. I never thought I would say this, but I cannot wait to get into the hospital. Shawn and I are so afraid of "something" happening to Clare while she's at home. I will breathe a big sigh of relief when we are finally in Boston on Sunday. Anyone who knows me knows that I HATE waiting. It's the waiting part that eats me up. Especially since we have noticed that Clare is a little dusky most of the time now. She is more tired, yet is having trouble sleeping (aka no naps and up every 2 hours at night, which makes for a tired mommy as well). She eats much more frequently. Our cardiologist explained that these are all signs that Clare is having trouble regulating her blood pressure since her heart pressures are so out-of-whack again.

I take comfort in knowing that God is watching over his little baby Clare. I know I've said this over and over, but I am just in awe of the tremendous outpouring of prayers, love, and support we've witnessed through our blog. People from all over have heard Clare's story and are keeping her lifted up in prayer. From the bottom of my heart, thank you.

Jamie (aka "Bob") the Builder, October 2005 

Clare Bear, October 4, 2005 

A Spooky Halloween

Clare is going in on Halloween for her catheterization. To make a long story short, the hospital is having a little trouble rescheduling her surgery because the chief of cardiac surgery wants to personally operate on Clare (which is scary to know because that means she is high risk, but at the same time, it is good to know that Clare is being worked on by literally one of the best pediatric cardiac surgeons in the world), but his schedule is extremely busy. So her catheter will be on Monday to relieve some of the pressure that is building up in her heart, then her surgery will hopefully be the following week.

I have to admit I am bummed to be missing Halloween this year. I will post pictures of our adorable kids in their costumes.

Surgery Rescheduled

Clare had her cardiology appointment and echo today, and, as usual, the news was not good. Her heart has worsened very quickly again, and she has been having more frequent periods of duskiness (turns blue) around her mouth. The cardiologist is trying to get her into surgery within the week. So, once again, we are back into the hospital much sooner than expected. We should find out the date tomorrow.

We are in shock, so I don't really have a lot to say except please pray.

Clare's sweet smile, October 16, 2005 

Smiling Sweetie

Way back when we started this blog, one of the first things I posted was that Clare had started smiling. She smiles frequently now. It is usually very easy to get our sweet baby to give us a big smile. However, it has been a little harder getting her to do it for the camera. Clare has been photographed by our professional photographer four times now, and she has yet to smile for his camera! My parents and sister Christina were visiting this past Sunday, and my mom was able to capture Clare's sweet smile for the camera. It totally lights up her face!

Trusting

Winter is coming... and that means so is flu season. And flu shots. I am one of those people torn between whether people need a flu vaccine. Being a conscientious mother who has heard varied opinions, I've read the pros and cons to the whole vaccination debate. This year, however, the choice was simple for me. We asked Clare's cardiologist if she should get a flu shot. The answer was "yes - ASAP." That cinches it for me. It's funny how, in our house, the cardiologist's word is golden. She (meaning the doctor) dictates many of our actions regarding Clare. Again, being a conscientious mother, I interviewed pediatricians prior to Jamie's birth and chose our pediatrician with care. We have been extremely pleased with him - in his treatment of both Jamie and Clare. He's a great guy - sense of humor like Shawn's (which I do believe is a good thing!), great with the kids, and an awesome doctor. But I allow myself to question his advice sometimes (not necessarily on medical decisions, but in regard to parenting). After all, I am the parent and know my children best. When it comes to the cardiologist, however, it's a whole different story. She happened to be the cardiologist on-call for our clinic the day after Clare was born and her murmur detected, so she became Clare's cardiologist by chance of their schedule. We liked her immediately, and over the past six months, have come to greatly respect her abilities and value her advice. I never thought someone outside our family would have such an influence on how we raise our kids and what choices we make for them. But she certainly does! I also never thought I would so literally have to trust my child's life to someone else. But we do trust her, and she cares so well for Clare. And thank God for that because I strongly believe that she is one of the reasons Clare is doing as well as she is. We can see God's hand in shaping Clare's life.

Back to the flu shots (sorry for the digression!). So we were at the pediatrician's for Clare's 6-month visit, and she was going to get her flu shot. The pediatrician strongly recommended the entire family get vaccinated because it is important for Clare's health that no one brings the flu into our house. So he asked if we wanted him to vaccinate Jamie as well that day. We definitely wanted Jamie vaccinated, but I was so nervous how he was going to do with it. We play often with Jamie's Fisher Price doctor's kit at home, and Jamie loves to give other people shots, but I was unsure how Jamie would take being on the receiving end of a real shot! He hadn't received any shots for over a year. He is so much more aware now of what's going on around him and has a longer memory, especially of boo-boos. But he was going to get vaccinated eventually, so might as well just do it. Our doctor is awesome and said he would take care of telling Jamie (I was glad to be able to wimp out on that!). When the shot was ready, he asked Jamie to sit on the table. He told Jamie that he was going to roll up his sleeve and give him a shot. It would probably hurt a little bit, but he had a band-aid for Jamie when it was done (Jamie is obsessed with band-aids) and would get him stickers. So Jamie pushed up his sleeve. The doctor asked if he could give Jamie his shot now, and Jamie said "yes" in a little voice. The hovering mom was ready to scoop her little boy up after the shot was administered and the tears flowing. I was thinking in my head - we could go to the pharmacy afterwards and get a sticker book - we could go to Wendy's and get a Frosty - what else can I promise my son to make him feel better. So the doctor leaned over and gave Jamie his shot. Jamie just looked at him the whole time - never flinched, never moved, never made a face, and definitely never cried! Like it was nothing. What a brave boy! I was so relieved that Jamie didn't seem bothered at all. He trusted the doctor (and us) that it was going to be a little hurt, then be all better. In his mind, why make a big deal out of it. (Which is kind of funny because I accidentally stepped on one of his toys the other day and it was the end of the world to him. Okay, so bad mommy broke the toy when she stepped on it, but still...) It's a simple thing, but trust in God - He takes care of us.

Interesting tidbit that I never knew - Clare could not have her other normal six-month vaccinations this recent visit because when she goes on the bypass machine during surgery, it will wipe all that out of her system. The flu shot is okay because she will have a booster in three months anyway. The bypass machine filters the blood before it sends it back into Clare's body. I thought that was interesting! We are learning more and more about medicine every day!

Clare's gorgeous 6 month photo, October 4, 2005

Where Are They?

I know we've been sporadic in updating our blog lately. We are just enjoying being "normal" people for a little while. I put normal in quotes because, really, what is normal? To us these last couple weeks, "normal" is enjoying the beautiful fall weather. Fall is my absolute favorite time of year. Crisp mornings and evenings, snuggling under the covers, warm sunny days, gorgeous colors on the trees. We've been so busy lately (and not going to the hospital or the doctor's). We've been apple picking (twice!), pumpkin picking, to the zoo (twice!), leaf hunting, the Children's Museum (twice!), playing at the playground, pumpkin painting (twice!), and making many loaves of apple bread (too many times to count, it's so yummy). And that's just in the last two weeks! As I sit here resting while my children are napping, I realize how blessed I am. Life has been throwing us many curve balls lately, so I really grab onto these wonderful times in between those curve balls.

Curve ball: Clare's third cath is scheduled for November 28, and her open heart surgery is November 30. She is being monitored with her cardiologist in between with echos, lung scans, and EKGs. Hopefully we will make it to her planned dates and not end up in the hospital sooner.