Friday, March 31, 2006

Let Her Eat Cake

What's a first birthday without birthday cake?

Clare almost didn't get birthday cake. Since she's not doing so well with solids beyond pureed foods, Shawn and I debated the whole birthday cake issue. We knew she wouldn't be able to eat any of it. We discussed it, and I even posted a question on the WS listserve I belong to asking for suggestions. We received a whole slew of ideas - pudding, custard, yogurt. Then I received one e-mail that put it all in perspective for me - simply said, "Let her eat cake." How could we be so stupid??? Of course, just let her eat cake. Who cares if she can't actually eat it! Why would we let those first birthday memories (not to mention photo ops) go just because Clare may not technically be able to eat the cake? After all, not too many first birthday babies actually eat their cake. Most just play around in it and make a mess.

As you can see from the photo, that's exactly what Clare did. I made her a simple yellow heart-shaped cake with plain vanilla frosting. And then we let her go to town. And boy did she ever! The first thing Clare did was to scrape off some frosting, then flip the cake over. She had a great time and even put some cake and frosting in her mouth. She loved it!

Again and again, I am hit with a wake-up call that I need to let the WS side of Clare's life go sometimes and just let her be a baby without second guessing everything. Maybe I will finally learn that lesson by the time Clare turns two!

Happy Birthday, Clare Bear!

Top ten things Clare has taught us over the past year:

1 – The most important thing in this world is family.
2 – The best thing to smile about is spontaneous dancing in the kitchen. Even when there’s no music playing. Even when it’s Daddy dancing (remember Elaine from Seinfeld?).
3 – Keep smiling even when the dancing is done. Your crazy older brother will act crazier for just one smile. Your aunties, uncle, grandparents, cousins, just about anyone will do anything for you. And it will make Mommy and Daddy feel that every bit of pain endured is worth it just to see that wonderful smile.
4 – There IS a silver lining in every rain cloud.
5 – It’s okay to have crazy hair!
6 –The anatomy of the heart and how it works (we knew we should have paid attention in 5th grade science class).
7 – Hospital food can be quite tasty. Unless you eat it for 12 days in a row.
8 – Don’t listen to what others say you can’t do.
9 – Never give up. Even when those toes seem so far away, keep trying – you know you can get them in your mouth if you just stretch a little bit more.
10 – There is always hope. There is always joy. There is always laughter. Even if you have to wait a year for it.

Happy birthday to the sweetest, most amazing girl in the world. Thank you for teaching us the most important lessons about life. We are blessed to be your parents. We love you so much!

Thursday, March 30, 2006

Laughing Matters

Clare laughed tonight! Not a "do you think that was a laugh? it sort of sounded like a laugh? was it really a laugh? maybe she was starting to cry" kind of laugh. But an honest-to-goodness giggle, I might even call it a chuckle, from her belly laugh. After waiting 364 days to hear that laugh, it was the sweetest sound in the world!

Wednesday, March 29, 2006

The Optimists Club

First off – I have to let everyone know that we are finally up and about again. The entire family was slayed by the dreaded virus, but all are feeling better now! Thank goodness because we have a birthday party to organize!

We have received so many comments about how positive Shawn and I are and how we see the good in every situation. I am appreciative that people say this because there are MANY times when I do not feel so positive and good about everything. However, on the whole, we do belong to the Optimists Club (not really, but I am sure there is such a thing).

Quite frankly, we’ve dealt with some very tough stuff over the past 12 months. We thought we had dealt with enough tough stuff during our engagement and early years of marriage – long distance relationship while dating and engaged, death of two beloved grandmothers, moving to a new state away from family and knowing no one, devastating miscarriage, and struggle with infertility. When I look back over that list, I often think that God was preparing us for the road ahead. Our faith in God and our faith in each other and our marriage were tested with these “smaller” challenges to prepare us for the bigger challenges that lay ahead (I say “smaller” in quotes because each of these challenges were very real struggles for us at the time).

There are days when all I want to do is crawl back into bed and wallow in self-pity and misery. Maybe I would if I did not have two precious children who need me to get up and face life. And I have a choice – to either face life with gloom, self-pity, and negativity or face it with joy, humor, and optimism. My children are the greatest gift God has given me. For their sake alone, I choose optimism. I choose to be cheerful (most days!). I choose to not give up. I choose to keep on smiling. How can I not?

Has this past year been easy? Definitely not. Have we doubted and despaired at times? Absolutely. But we have persevered, and here we are, almost a year later. There can’t be triumphs without the struggles. This journey so far has been a journey of many parts – some rocky, some smooth; some winding where we have no idea what’s around the bend, and some straight where we catch glimpses of the future. But at the end of this first year, we have the most important thing to show for this journey – we have our beloved Clare who, right now, is thriving and loving life.

Saturday, March 25, 2006

Babies, Bubbles, & Bikinis

Clare graduated to a big girl tub last week. Now that she sits, we got out our inflatable tub and tried her in it. She loves it! It took her one bath to realize that splashing is fun.

I was reading Clare's scrapbook yesterday, and I was looking at a page with photos taken pre-surgery and, thus, pre-scars. I forgot what Clare's chest used to look like - that beautiful unblemished baby skin. Now she has a three-inch incision scar down the center, two circular scars below that where her chest tubes were, and three more smaller scars where the pacer and ground wires were. It saddens me at times when I see her chest because she will have these scars for the rest of her life. That perfect skin is gone forever. I feel like I did not cherish it enough before it was gone. It sounds silly but you tend to take little things like that for granted. I used to always rub her chest and tummy when I dressed her or changed her diaper. After her surgery, I did not touch her there for the longest time. Partly because I thought that area might be sensitive, but also because I did not want to touch it. For the first time the other day, I touched Clare's scar. I ran my finger down the entire length. Then I rubbed her chest and belly like I used to do. And you know what? It still felt like Clare's chest - with some added character to it. It's this character that makes us who we are - not necessarily our perfections, but our imperfections and what we do with them.

Maybe Clare will never be a bikini model, but brave warriors have battle wounds - her scars show what a tough cookie she is!

Friday, March 24, 2006

House of Plague

The dreaded "bug" that has been sweeping the country (okay, at least southern NH, as far as I know) has hit this household. Officially as of 10pm last night when Jamie woke up vomiting, we became one sick house. Then Clare started up this morning. Oh, it's so not fun when the kiddos are sick - especially at the same time.

I had naively hoped we had avoided this bug because we were in Boston at the hospital when most of our friends were down with it. After discussing this with one of my friends yesterday (whose family was hit a couple weeks ago), when Jamie and I said bedtime prayers together last night, I specifically thanked God that both Jamie and Clare were healthy and strong. With Clare just coming home from the hospital, packing and moving, and getting ready for Clare's birthday, I was so grateful we had missed this particular stomach virus because I didn't think I could handle the added stress. Well, apparently, I am about to find out!

So far, we have done seven loads of laundry. Every pair of my pants were either pooped on or vomited on. (Lovely, I know!) It was a great excuse to wear my pajamas for most of the day. The big kicker is that all our extra bedding and clothing is packed! After the first incident last night when Jamie's toddler bedding needed to be changed, I found some twin sheets that had resided in a garbage bag in our crawl space for the entire five years we've lived in this house. I am not sure how clean they were, but we were desperate. Then when those got soiled, we took the sheet from Clare's crib and found an old blanket to go with it for Jamie. The poor kid! And poor Clare - she ended up sleeping back in the playpen in our room, and I went without a pillow so Jamie could have mine.

We are a little concerned about Clare because she is so little, and we do not want her to become dehydrated. It's very crucial for her narrowed blood vessels that she stays well hydrated. So we are watching her closely. Jamie, on the other hand, seems to be doing much better today (especially since he is in Hour 4 of his nap). I am now praying that Shawn and I escape the bug. Or, if we don't, that it comes and goes quickly so we can get back to life and packing.

Wednesday, March 22, 2006

Where Are Them Toofers?

Clare has not gotten her first tooth yet. Her gums are swollen, and I look every morning to see if that first tooth has popped through. She has moments of crankiness and clinginess when I think her gums must be bothering her and Tylenol seems to help, but still no tooth!

We're taking bets on whether or not Clare will get her first tooth before her first birthday (which is in 8 days and counting). Although, as Shawn always says - with West Virginia and Maine DNA combined, Clare will be lucky to even get one tooth!

Tuesday, March 21, 2006

Jamie's Milestone

S~ Yesterday, Jamie hit a milestone. Normally this would excite us, but this was a milestone that I was not ready for. Yesterday as Teresa and I were heading to the mall to return some bedding, I heard a tiny voice in the back of the van say, "Dad, (not Daddy, Dad!) do you have any money?" I thought this wasn't supposed to happen until they were teenagers! So knowing he wanted the $1.75 to ride the carousel, and knowing that he was too young to understand the Money Doesn't Grow on Trees lecture, I gave him the money. I am a little worried what this might bring where as he is so young and has already figured out who has the money. Maybe I should tell him that I had to get the $1.75 from Teresa!

Saturday, March 18, 2006

Back to the Drawing Board

We met with Clare's GI this week as well. I didn't post this earlier because I was savoring the good news from Clare's cardiologist. Her GI appointment was before the cardiology appointment, so I was still on my cardiology high earlier!

Unfortunately Clare's GI follow-up did not go as well as her cardiology one. She has not gained any weight in a couple weeks, so even though she was tracking along her weight curve previously, now she has stalled again. So it's back to the drawing board to come up with ways to beef Clare up! We were excited about the dietician's assessment of Clare, but the GI does not agree 100% with the dietician. The dietician said there was no need to increase the fortification of Clare's solids. The GI wants us to fortify them with 6 times the amount of formula powder as before! This means that for every tablespoon of pureed food Clare eats, we add one tablespoon of formula powder. I hate when you get conflicting opinions from the specialists because who do you listen to? We are following the GI's advice because he has seen Clare multiple times and knows her medical history as opposed to the dietician who saw Clare once.

When we made Clare's dinner the first night following the GI's new menu, it was so much powder and so much food. Shawn and I agreed that Clare would never eat all that especially with the amount of powder in it. I thought about cutting down on the amount of powder because it seemed like an extreme amount, but went ahead with it because I wanted to give it a real try. And you know what? Clare liked it! She polished off her entire dinner and has done so every night since. The powder is supposed to be tasteless, so I don't think it's the taste. Maybe Clare has an easier time with the consistency now? It just goes to show that you never know what will work. And you can't admit defeat before you even try.

Clare is going to follow-up with the GI in two weeks when she has her one year pediatric visit. In the meantime, we are doing our best to bulk her up. We've started giving her three meals a day (although she is not crazy about eating at breakfast or lunch yet) and are going to try her on whole milk soon. Her feeding technique has gotten so much better, and she barely dribbles any out now. She can pick up Cheerios and rice puffs and feed herself. She still has a very sensitive gag reflex, and we have had some cases of vomiting, but hopefully that will improve with time as well. Although getting her to consume more calories is a struggle right now, we are pleased with her progress in her technique so far.

Thursday, March 16, 2006

Light at the End of the Tunnel

We can see the light! (There's some song with that lyric, "I can see the light. I can see the light." which has been stuck in my head all afternoon.)

Clare had her follow-up with the cardiologist here at home. She had a chest x-ray and echocardiogram done as usual. Her cardiologist is super-pleased with what she saw. Her blood pressures were terrific in that the pressure taken on her arm matched that of her leg. Her blood pressure was on the high side, which is normal for Clare, but the pressures being the same means there is no blood flow problems through Clare's aorta. Which means that the cath was very successful. The cardiologist went over the entire cath procedure with me, and I saw the photos and video of the dilations.

Sidebar: I did meet Clare's interventional cardiologist at Children's Hospital (he's the one who performs the caths and is the chief cardiologist at Children's), but he did not go over the procedure with me. He literally walked into Clare's room post-cath, didn't introduce himself or say a word, checked Clare out, then on his way out told me to watch that she doesn't become "febrile." I knew who he was because his photo hangs on the wall on the cardiac floor. But this was the first time he had personally come to the cardiac floor to check on Clare, so I was stunned speechless and didn't say a word either. Luckily, I know what "febrile" means (fever). Clare's cardiologist explained to me that this doctor was a brilliant man, but one that rarely speaks. He had no bedside manner, but who cares, as long as he is an expert at what he does!

So we went over the cath. It was a big procedure - her biggest catheterization yet. In retrospect, that is why she had such a tough time the night after her cath. Seven of Clare's pulmonary arteries were dilated (which is a lot - usually it's 3-4), and the dilation of her aortic coarctation was a huge dilation. Her lung scan post-cath was that of a typical lung scan. So even though Clare still has many occlusions throughout her pulmonic side, her blood flow is being evenly distributed to her lungs.

The cardiologist also showed me the two arteries that were completely occluded in Clare (which is the fancy cardiology term for "blocked" - it means that there is no blood flow through these vessels). One is on her left pulmonary side, and the other is her right femoral artery. In both cases, collateral vessels have developed around the arteries, so that the blood is getting where it needs to be, just taking a different route. This is not a big deal in her pulmonary side. However, as I stated after Clare's cath, the occlusion of her femoral artery means that the doctors can no longer gain access there for her caths. The only access they have now is through her left femoral artery. If, in the future, the left side also becomes occluded, then the doctors will have to go through Clare's jugular. Not something we want to happen, but it can be done.

Where's the light you ask? Clare does not need to go back to the cardiologist for three months! Wow! When she goes back, she will have an echo done under sedation so they can get a really good look at her heart. I am so happy we have reached a point where Clare can go three months between visits. The cardiologist (who tends to be conservative, which I believe is a good thing when it comes to heart issues) is not as positive that Clare can go a year without needing another cath, but she is at least going 3-4 months again. So I can see that light at the end of this VERY long tunnel. It may just be a faint glimmer, but I know it's there.

Sunday, March 12, 2006

Clap Happy

Once Clare started clapping, she can't stop! It is so cute! She claps all the time now. She loves doing it. Maybe she likes the feeling of bringing her hands together. Maybe she likes the slapping noise. Maybe she likes the big grins and cheers she gets every time she does it. I can't describe the feeling of watching your child do something so simple, yet so incredible. And it's just clapping! I can't imagine how I'll feel when Clare starts walking or talking.

As Clare gets older, we notice more and more that she is "special." It's so hard to say that word sometimes. When she was a newborn, she did normal newborn stuff. But now that she's approaching her first birthday, it's obvious that she is different. Clare doesn't laugh, she doesn't crawl, she doesn't pull up, she doesn't really eat solids, she doesn't babble. The list goes on and on. And she's started to do some "special" things. Like rocking and head bobbing. Her therapist explained it's a way for Clare to organize her brain and figure out where she is in space (plus she probably likes the sensation) - two things that can be tough for kids with sensory issues and low muscle tone. And it provides stimulation for her. When Clare started doing it, I kind of freaked out because to me it seemed like it was a (and I am going to use the dreaded word) "retarded" thing to do. After discussing it with her therapist, I have since calmed down about my freaking out over it. Because Clare may be mentally retarded. Most children with WS are to some degree in the technical, scientific, medical definition of "mental retardation." It is so hard for me to admit that, but there's the stark truth. And, if she is, and needs to do stuff like that, we need to be there to help her. So the therapist showed us how to give Clare some deep pressure input. We can do this at times throughout the day to give her that physical stimulation she needs and do it especially when she starts rocking or bobbing. And it's okay that Clare does that. She is going to have to learn as well how to function in this big bad scary world.

I listed what Clare can't do. However, the list of what she can do is so long, I couldn't name them all. She lights up a room with her smile. She makes everyone she meets fall in love with her. She inspires so many with her story. She brings joy to us each and every day.

Friday, March 10, 2006

If You're Happy and You Know It....

Clap Your Hands!

Clare started clapping today for the first time. It sounds like a simple thing, but it really is a big deal occupational therapy-wise. We've been clapping in front of her quite often over the past few weeks. I clap her hands with her, and we play lots of patty cake. Today, Clare must have been happy because after Jamie clapped, she clapped back! I love Clare's face when she does something new. Jamie and I were cheering like madmen. Clare just looked at us with this little half smile on her face like, "Yeah, I knew how to do this all the time."

Clare seems to be back to her old self again other than sleeping a lot. After her three-hour nap yesterday, she did a nine-hour stretch at night (a first - and I admit I did the stretch with her and forgot to wake up at 2 am to give her meds!), then took a four-hour nap today. So I think Clare has gotten all the beauty sleep she needs. Now if only Mommy could say the same....

We see Clare's cardiologist next week for a chest x-ray and echo, so we'll see if she concurs with the hospital's opinion that Clare should be cath-free for a year. Maybe that's why Clare is so happy!

Thursday, March 09, 2006

Sleeping Beauty

We are home! I love those words!

Clare was so wiped from her stay that she fell asleep as Shawn was carrying her to put her in the stroller to wheel her out of the hospital. She slept for three straight hours - from the stroller to the car, through the drive home, and up to her crib. She didn't wake up until Jamie came home. (I think she heard her big brother's voice and that's what prompted her to finally wake up!) She must have known that her sweet brother had picked out a bottle of duckie soap for her at the Children's Museum and was eagerly waiting to give it to her.

This is Clare conked out in the hospital crib after a long night of not sleeping!

We Need Some Sleep!

Clare had a rough night last night. Due to the amount of balloon dilations done and dye contrast used in her body during the cath, the doctors were concerned about her having a fever or having some kidney issues from the dye. She was kept on Heparin, antibiotics, and Tylenol throughout the night. However, it was obvious that Clare did not feel well and in the wee hours of the morning, she starting getting feverish and her heart rate was very high (180-200). The doctors decided to go ahead and give Clare a blood transfusion. She finally got a transfusion from 5-9 am this morning. Because of Clare's fever and the transfusion, the nurse came in every hour to check vitals, so neither Clare nor I got much sleep last night. This morning, we are waiting for Clare to have some blood work done to check her renal function and crit count again and a lung scan done to check her lungs post-cath. The transfusion was what she needed since her fever is gone and she is feeling much better. She is sleeping peacefully now. Clare is still scheduled to be discharged this afternoon, so we are looking forward to going home!

Wednesday, March 08, 2006

Cath Complete

We are exhausted, so just a brief note that Clare's cath is done. She did beautifully. The doctors did a lot of dilating, but the dilations were successful and things look great right now. If all goes well, she may not need another cath for a year! I will write more when we get some rest!

(Later) My little peanut is asleep, so I have some time to put some thoughts down about today. What a day. All in all, it was a pretty good day, albeit a very tiring day. The cath was a long one, but, as I said, the doctors were able to successfully dilate Clare's right and left pulmonary arteries as well as her aorta where the surgical patch ends. They were so succesful in the aorta that the pressure gradient is down to almost zero (zero being the best). Clare almost ended up with another stent in her pulmonary side, but the cardiologist was able to dilate that section enough that a stent became unnecessary. Thank God for these doctors and their skill. Not having a stent placed means that there is no ICU stay and Clare can be discharged tomorrow.

Right now, Clare is pretty wiped. She has slept all afternoon, waking briefly to nurse. She is in some discomfort, so she has been given some pain medication. The only real negative part of her cath is that the vein the doctors use as access is no longer working. Because of repeated entry, a blood clot has formed there. Clare is in no danger from that clot because her other vessels will work around it, but the doctors can no longer use that vein. Therefore, they have to gain entry through the artery, which is a bigger risk. The doctors did use the vein on her other side as well, so Clare has more healing to be done in that area. She lost a lot of blood, but not enough to warrant the risk of a transfusion, so she's very pale and sleepy. This should all improve over the next couple days.

The real exciting news is that Clare's pulmonary side looks fairly "good." She still has much narrowing throughout her smaller branches on that side, but the doctors really cannot do too much that far out. Her proximal arteries (where the stents are) look much better because of the stents. Therefore, she does not need another cath for hopefully at least a year. The thing that could bring Clare in sooner is if the coarctation of her aorta develops again. So she will continue with close follow-ups with our cardiologist at home. This has been the best news we've received yet! Although we know Clare's pattern is to require intervention sooner rather than later, we are excited at the possibility of a year between procedures!

First Update

We received our first update. Clare is doing well, and the doctors had a chance to look at her heart already. She does need both her pulmonary arteries and descending aorta dilated, so that is what they are concentrating on right now. I am not sure how long that will take or if anything else beyond dilation will be done. But so far, so good. Nothing unexpected.

Cath Day

Today is cath day. We are at Children's Hospital awaiting the start of Clare's catheterization. My mom is currently walking Clare around the floor because she is quite fussy from not eating for 6+ hours now. Clare is second case today, which means that we have to wait for the first patient's cath to end before they come to take Clare. Unfortunately, that is at no set time. It could be in 5 minutes, it could be 2 hours from now. The doctors have to assume the earliest, so Clare was cut off from food at 3am. Hopefully she will be brought in soon because our little girl is very grumpy!

Clare has "graduated" in many ways at the hospital. Being second case means she is one of the older children scheduled for a cath. She gets an actual crib bed now (not the infant bed anymore), since most kids her age are crawling and pulling up. (So the bed comes with side rails that can be pulled up quite high and a tent on top for those who are climbers.) Clare made that crib her home last night. She had toys and blankets scattered all over the place and scooted herself around the bed. When I woke up this morning, she was curled all the way at the top of the bed sound asleep against the pillow I propped up there so she would stop hitting her head on the bars. She was so sweet and peaceful.

Clare also discovered this trip that leads, O2 monitors, blood pressure cuffs, and IV lines are all great toys. She has chewed, sucked, pulled, and banged on all of them. The blood pressure cuff makes a terrific noise when banged against the side of the metal railing. She sat in the bed for about 30 minutes yesterday just playing with her wires. It was very cute!

It's hard to believe it's been 4 months since we've been here. We have made ourselves at home again. Hopefully this will only be "home" until tomorrow. We will keep the blog updated as the day progresses.

Thank you for all the prayers!

Monday, March 06, 2006

One of Those Days

It was DEFINITELY one of those days. When you wonder why you got out of bed at all.

It was just an insane day. And, of course, it was the day before we head down to the hospital, so I had a zillion things on my to do list and did none of them! I joined a new playgroup and had every intention of going there this morning - never happened. We (and by "we," I really mean "I") just couldn't get our act together this morning. Then Clare needed a nap, and before I knew it, it was noon. The playgroup was long past, and I had twenty minutes to feed Jamie lunch, get Clare up, and get them both out the door to Jamie's doctor's appointment. (Yes, sometimes Jamie has a doctor's appointment as well!)

The early afternoon fared a little better because both kids took a nap, then we ran some errands. But when we got home, I slammed the van door closed on Jamie's left foot... Jamie's SHOELESS left foot. I was hurrying to get the kids out of the house to run our errands, so neither of them had shoes or coats on (now I am really starting to feel like a terrible mom). But the van was toasty warm and neither of them were leaving it while we were out. So the door incident happened, and Jamie was beside himself in pain. I almost cried myself, I felt so bad. He kept crying "Mommy, you hurt me." His foot was so bruised and swollen, I worried it was broken. (I slammed the door hard.) The pediatrician's office wanted to see him right away to do an x-ray. When I explained to Jamie about x-rays and broken bones, his cries turned to, "Mommy, you broke my bone!" Shawn came home and took Jamie to the doctor's, so I could stay home with Clare. (Who had been crying herself during the entire time we ran errands and then the door incident, so she was quite worked up as well by now.)

Jamie and Shawn got home from the doctor's around 7 pm, and we finally ate dinner. Shawn's mom is staying with us tonight to care for Jamie while we're gone tomorrow, so we had a nice, relaxing dinner with Mimi (who, bless her, washed all my dishes that piled up throughout the day). The good news is that Jamie's foot is not broken, just badly bruised. His first words when he walked back in the door? "Mommy, you didn't break my bone!" with a big smile on his face. Then dinner ended, and Clare (who was sitting on my lap) promptly vomited all over me. Oh geez! Seriously, what more could go wrong??

Now it's the end of the day, and I still have not done a thing on my to do list to get ready to leave in the morning. Once Shawn and Jamie came home, I could have done some stuff, but it was much more fun (and important) to play with Jamie on the bed, being silly, and reading books by flashlight in the dark. And it was worth my scrambling around now to spend a few moments earlier snuggling with my freshly bathed Clare before she went to bed. The day wasn't all bad. I also saw my friend's newest little boy (only 8 days old!), and he is precious. A newborn baby is just so sweet, there's nothing like it. It hits home again how fast kids grow. I can't believe my own baby boy turned three a month ago and my baby girl is turning one in three weeks. So even though I ended up not accomplishing what I wanted to do today, I got to do some of the stuff that matters most (although I could have done without almost breaking Jamie's foot and the vomit).

Saturday, March 04, 2006

Precious Moment

Precious Moment of the Day:

Over dinner, I asked Jamie who his best friend was, expecting him to reply Ethan - his best bud that he wrestles and laughs and is absolutely loud and crazy and BOY with; or Elizabeth - his "girlfriend" who he shares somewhat quieter moments (not really!) of reading and exploring (especially in their imaginations).

Jamie's response? Simply stated - "Clare."

These are the moments that make your heart melt.

Friday, March 03, 2006

Those Scary Doctors

We knew it would happen eventually, and the time has arrived. Clare is afraid of the doctor's office. Little by little, we've been seeing that she is much more cognizant of what is going on at the doctor's and dislikes all of it! Yesterday she had her endocrinology appointment. As soon as I laid her on the bed to undress her, she started crying. She cried throughout the entire appointment and stopped crying almost immediately once I dressed her at the end. Now the endocrinologist is probably the least invasive of all Clare's doctors. He weighs her, measures her, and listens to her heart; but, other than that, all he does is ask questions about her growth and development. He does order blood work to check her thyroid and calcium levels, but that's at a separate location at a different time (and since we're going down to Boston next week, Clare's just going to have all her labs drawn there), so Clare has no pain or discomfort at these appointments. She doesn't care - she is done with the doctor's! It probably didn't help that she went to the doctor's the day before as well to get her monthly RSV-antibody shot (which was painful). Yet, even at that appointment, she cried from the moment I undressed her - well before any shot was given. Poor little peanut! I am nervous how she will be at Children's Hospital next week. It's been four months since her open heart surgery, and she has really grown a lot since then! It's great that she has the cognitive awareness of her surroundings and what going to the doctor's entails. However, at the same time, I can't help but wish sometimes that she was still just three months old - when she would receive a shot, cry momentarily, then forget about it almost immediately. Growing up is so hard!