Monday, August 11, 2008

Starting a New Blog

If you would like to continue reading about our wonderfully exciting life :-) please email me at cindytwilliams@gmail.com and I will send you the address and password to our new family blog .  If not, thank you for reading about Claire and her CDH journey this year, and for all of your kind comments!

Thursday, July 31, 2008

Dancing

Claire is walking around all over the place now and rarely crawls. She has also taken up dancing...

Sunday, July 20, 2008

New Hairdo

When I give Claire a bath, she gets clean. When James gives Claire a bath, hilarity ensues...

Friday, July 18, 2008

Thursday, July 17, 2008

Rashy and Skinny

On Sunday I noticed that Claire had a rash all over her body. I thought it was a food allergy and gave her Benadryl, which had no effect. She didn't act like it was bothering her or itching, and she wasn't acting sick and didn't have fever. The rash seems to be getting better and drying out, but since it is still there today I took her to the pediatrician to have him look at it. I was supposed to take her in for a weight check soon anyway.

The doctor wasn't sure what the rash was. He didn't think it was a food allergy, said it could be a virus but she's not acting sick otherwise, and said it could just be eczema or dry skin. He told me to try switching soaps and putting lotion on her more often, and to bring her back next week if it's not better.

She weighed 17 lbs 10 oz on their scale today. She has gained 14 oz since 5 weeks ago, just shy of a pound. The doctor didn't seem overly thrilled by that and wants me to try to get her to drink more PediaSure and eat more. I have no idea how much she is supposed to be gaining, but she at least seems to be heading back up again on the chart.

Monday, July 14, 2008

Hesitant

The morning that Claire took her first steps she was bold and kept trying to walk without holding onto anything. But I guess she fell enough times to become more hesitant, and by the time her daddy got home from work that evening she wouldn't even try anymore. Since then she has taken a more cautious approach to walking. She will take a few steps between furniture if the distance is short, will walk for miles if you give her a push toy or hold her hands, and is able to stand without holding onto anything. One of these days she will get brave again and let go.


Last weekend James painted Claire's room yellow and decorated her walls. It looks much cheerier now.


She goes to the pediatrician next week for a weight check. I weighed her today on our bathroom scale and it said she was 18.4 lbs! That was with her clothes and diaper on, but I think she is at least 18. The PediaSure is working and she is gaining again. We have also been feeding her more fattening foods, like lasagna...

Tuesday, July 1, 2008

First Steps

Claire took her first steps today! I picked her up off the changing table and stood her in the floor and she shocked me by walking five or six steps across her bedroom. I cheered and clapped and she looked very pleased with herself. Now that she has it figured out she has been practicing all morning. She is wobbly, but swiftly getting the hang of it. Look out world!

Saturday, June 28, 2008

Smoky Mountains

It has been a LONG time since our last vacation, so we decided to get away for the weekend and go to Gatlinburg.


We did lots of hiking, including Clingman's Dome and Laurel Falls trails.


After hiking we picnicked in the park, then went back to the hotel to swim in the pool. In the evenings we strolled downtown and Claire waved and said "hey" to everyone we passed.


Here are some more pictures from our trip.

Thursday, June 19, 2008

12-Month Portraits

Since we don't have many photos of Claire (Ha! Only a bajillion!) I took her to Portrait Innovations to get her 12-month portraits made...


She did great and was all smiles and didn't even rip the bow out of her hair. But towards the end she got tired and let us know she'd had enough of this picture-taking stuff. I would cry too if someone made me wear this getup...

Wednesday, June 18, 2008

Bathing Beauties


Claire went swimming with her new friend Jaiden this afternoon. The girls had coordinating floats and enjoyed lounging in the pool together and kicking. Afterwards we came inside and they had a grand time playing with Jaiden's toys, especially her kitchen set.

Wednesday, June 11, 2008

12-Month Checkup

Claire went to the pediatrician today for her 12-month checkup. She weighs 16 lbs 12 oz and is 29 inches long. She dropped off the percentile chart for weight, so they want us to continue giving her PediaSure and come back in 6 weeks for another weight check. She is also still anemic, so we've got to keep giving her vitamins and feeding her meat and other iron-rich foods. She has 5 teeth now and has been feeding herself finger foods for over a month (she refuses to eat baby food anymore). She eats pretty well, she just burns it all off. Maybe we should feed her birthday cake to fatten her up since she really seems to like it.

She had to get several vaccination shots today and got pretty upset. But afterwards the nurse gave her a cherry lollipop, which greatly improved Claire's outlook on life.


She had a cold last week that she caught from me. She ran fever for several days and had a runny/stuffed up nose. We almost canceled her birthday party because she was sick, but the fever broke the day before and she started feeling much better. Today the pediatrician listened to her lungs and looked in her ears and said all was clear.

Saturday, June 7, 2008

1st Birthday

Claire turned one year old today! We had a big party with family and friends. Claire was hilarious eating her birthday cake. She dove right in and made a big mess...






She got lots of cool toys and cute clothes...



She was tuckered out after the day's festivities, and snoozed all the way home.


James and I got her a wagon for her birthday. We took it for a spin yesterday and she loves it.

Monday, May 26, 2008

Memorial Day Weekend

Memorial Day weekend was fun and busy. On Saturday we went to the zoo and saw elephants, giraffes, tigers, and monkeys.



Claire also rode the carousel. She recently learned how to wave, and was waving at people as we went around. After lunch she took a snooze in her stroller.



It was hot yesterday, so she went swimming in her pool and loved on her puppy dogs.



Later after it cooled down we plopped on a blanket in a shady spot in the yard and she played with grass. That night we went to a neighborhood cookout.

Thursday, May 22, 2008

Follow-Up Appointments

Claire had follow-up appointments at Children's Hospital in Birmingham today. She got a chest x-ray, then saw her surgeon and pulmonary doctor. I usually take a picture of her when she goes to the doctor, but didn't get any good ones today because she kept trying to crawl off the edge of the table!


Her sats reading was 100 and the pulmonary doctor said her lungs look great and that he can see improvement between today's x-ray and the one taken in February. Her left lung is still smaller than normal, but is growing well. I asked if I could leave Claire in the church nursery on Sundays and he said that would be fine this summer, but I need to keep her away from children this winter during cold/flu season. He said she would qualify for RSV/Synagis shots again this winter.

The surgeon said Claire's diaphragm repair still looks good and that she can go a year until her next x-ray unless she has any problems. We need to watch her closely for signs of re-herniation (trouble breathing, pain after eating, vomiting). I asked if she was less likely to re-herniate now that she is almost a year old and she said no, that it could happen at any time (eg. during growth spurts) and that she will need annual x-rays "indefinitely" to make sure everything is staying where it should be.

The surgeon also said Claire's latest x-ray looked like she might be developing scoliosis, but it could have been because Claire was wiggling around during the x-ray (I hope!). Scoliosis is a common side-effect of CDH, so we will need to watch her for this as she grows. I'm going to talk to her pediatrician about it when we go for her check-up next month.

Claire weighs 16 lbs 10 oz and is 27.5 inches long. She grew 1.5 inches since February, but didn't gain very much weight and dropped off her curve on the growth chart. They were hoping she would be closer to 20 lbs by the time she is a year old. She has always been small, but has always stayed around the 10th %. She is a lot more active now though (crawling, pulling up, cruising) and burning more calories. They sent a nutritionist in to talk with me. Claire is eating lots of table foods and is also still nursing. I was planning on gradually switching her to whole milk after she turns a year old. The nutritionist said I need to switch her to PediaSure instead so that she will get more calories (whole milk has less calories than breastmilk/formula, and PediaSure has more) and that I can go ahead and start giving it to her now. I gave her some vanilla PediaSure in her sippy cup this evening and she wasn't too thrilled with it. Pray that she takes a liking to it and fattens up!

I stopped by the NICU on our way out. It was freaky being back there and brought back a lot of memories. I showed Claire off to some of the nurses who had taken care of her, including the one who helped transport her from UAB when she was born and took care of her those first few days. He was glad to see her and said she looked great and that "made it all worthwhile." They have had a slew of CDH babies come in lately. They had four come in this week and one of those passed away. Another CDH baby was arriving this afternoon, and two more were about to be born at UAB.

Now that Claire is nearly a year old we are going to transfer her follow-up care to Vanderbilt Children's Hospital, which is MUCH closer to home. Both doctors I saw today gave me referrals and are going to transfer her records up there. I will miss everyone at Children's in Birmingham and it was sad to have to tell them goodbye. The doctors and nurses there are great and they know us and seem to genuinely care how Claire is doing. But I'm sure the doctors at Vandy will be great too, and I will feel better being closer to them in case we have a problem. And since we won't have to travel for follow-up appointments anymore James can go with me because he won't have to take off work.

Saturday, May 17, 2008

Racing

This morning we got up early and walked in the Run4Kids 5K. Claire rode in her stroller for the first two miles but then wanted out, so James carried her on his shoulders the last mile and got quite the workout. It was a beautiful morning to be out walking.

Wednesday, May 7, 2008

Cruising

Claire is 11 months old today! She is cruising around the furniture and walls, and everyone tells me it won't be long before she is walking.

Monday, May 5, 2008

Birthday Delivery

Today is James's 40th birthday! Claire and I went over to his office for lunch and surprised him with balloons. Tonight she is staying with a babysitter while he and I go out to dinner. For dessert we are having red velvet birthday cake.

Thursday, April 24, 2008

Sunday, April 20, 2008

Dining Out

We ate dinner at a restaurant tonight and Claire REALLY enjoyed her cookie...


She only has two teeth but makes very good use of them. She has been eating all sorts of finger foods lately, such as puffs, wagon wheels, teething cookies, and diced veggies and fruit. She prefers to feed herself rather than letting us feed her with a spoon, so we have to sneak in spoonfuls in between the bites she feeds herself.

Friday, April 11, 2008

Exploring

Claire has had no problems adjusting to her new surroundings. She was scared by the house when it was empty and echoed, but now that our furniture is in here she likes it just fine.

She has been sleeping well in her crib/room and only woke up ONE time last night...


She has explored EVERY square inch of the living room...


And she figured out how to climb up stairs (but not back down again). We installed some heavy-duty baby gates to keep her away from those for a while...


When she's not exploring, she takes time out of her busy schedule to help me with household chores...

Monday, April 7, 2008

New House

After spending five months (half Claire's life!) in a one-bedroom apartment, we were finally able to move into a house this weekend! Claire now has her own room and is able to sleep in her big-girl crib rather than the pack 'n play. She also has several "new" toys that got packed up this fall since she was too small to play with them. Her favorite is the Tap-a-Tune Piano, which she has been banging/climbing on all weekend. I have started calling her Schroeder.

Moving In...

Shopping at Home Depot...

Claire also turned 10 months old today. I can't believe she is so close to being a year old! Pretty soon I'm going to have to change the name of this blog from Baby Claire to Toddler Claire.

Monday, March 31, 2008

CDH Awareness Day

Today is the first annual Congenital Diaphragmatic Hernia Awareness Day! We are decked out in turquoise, as are several of our family members and friends. 28 states proclaimed the day, including Alabama (where Claire was born) and Tennessee (where we live now). The more people who know about CDH the better chances there will be for improved treatment, stronger support, and more research. The day also provides an opportunity for families whose lives have been affected by CDH to celebrate life and to remember loved ones lost.

Wednesday, March 26, 2008

Pulling Up

Claire has mastered crawling and is all over the place now. If she's awake, she is on the go. She has also started pulling up on everything within her reach. Her favorite activities this week are flipping open the door of the DVD player...

Playing with DVD Player

And gnawing on the coffee table...

Eating the Coffee Table