Tuesday, May 29, 2007
A photo of Clare in her AFO's. She dislikes them more and more. They force her feet flat on the ground, which she does not like. And I have to think they are very heavy on her tiny legs and feet, so it is more work for her to pick up her feet. Her shoes are supposed to come in this week, but even if they do, she won't be working with them until at least next week. Enjoy your break, Clare!
I had to also include these photos of enjoying our little swimming pool. Jamie is a fish and loves the water. He could be out there all day. This is the first year that Clare has enjoyed the pool as well. She won't go in any water that she deems too cold, but we have had some sweltering hot days this May. On these days, I fill up the pool in the morning, and after Clare's nap, it is almost bathwater warm - a temperature she is agreeable to. Then she, too, is a battle to remove from the pool. And this photo of Jamie is priceless. That's our boy - there is always some bad guy lurking out there just waiting for Super Jamie to catch. (Or, lately, it's been Ninja Turtle Jamie.)
Thursday, May 24, 2007
Wednesday, May 23, 2007
We heard from Children's Hospital today, and Clare's cath is scheduled for June 1. Sooner than expected. I assumed her cath would be mid-to-late June, not next Friday. Although part of me is glad the cath is sooner (just to get it over with), another part of me hates that it is next week. Once again, we are left scrambling to take care of all the details in a few short days. Plus this is a very busy month for us - immediately after we get home from Clare's cath, Shawn leaves for Philadelphia for a few days on business. He gets home, then we take off for my sister's wedding for a few days. Then the next weekend is Simon's Baptism and we are planning a big get-together for that. So it is one thing after another. On top of that, it is never comforting to hear the hospital tell you that the cardiologists want Clare in as soon as possible. What does that mean?? Okay, I know what it means, but I don't like to think about it. So Clare goes in next Thursday for pre-op, then Friday is her cath. I am praying, praying, praying that Clare does not need more stents. I know the two stents she has already in her main pulmonary arteries are working wonders in keeping those big arteries open. In Clare's last cath, she narrowly missed having another stent placed in a distal vessel thanks to the amazing skill of her doctor. I hope Clare is as blessed this time - no stents means no ICU stay and an easier recovery. She will have the same cardiologist performing this cath, and he is the Chief Cardiologist at Children's, so she is in good hands. It has just been so long since we've been through the routine, that every little detail is making me nervous.
Sunday, May 20, 2007
There are days when I totally forget about Williams syndrome and just see Clare as Clare and we do what we do because it’s our life. Without really thinking about it, I catalog her daily medications in my mind and check them off as I dose them out. We go from playgroup to physical therapy without second thoughts, and my only concern is where to wedge a two-hour nap in. But then there are days when it’s not just second nature and everything in me screams against it. The days when Clare is overly frustrated that she cannot get the toy she wants because she cannot get to it. The days when I am bringing three kids to the doctor’s office and trying to keep them all happy while we wait forever for our 10-minute follow-up. The days when we hear that Clare’s heart is working too hard, and the doctors need to relieve some of that pressure or else. Those days have become fewer and farther between as Clare grows older, but they still come. And usually end up smacking me in the face because they are fewer and farther between and I don’t expect them to come creeping up on me (or charging down on me!). But somewhere, deep down inside, I really don’t know if I would change any of it. That is such a tough question. Because if I did, would Clare be who she is? Would she still have her ear-splitting grin? Would she lovingly touch our faces and babble to us, while doling out hugs and kisses? Would she charm the pants off everyone she meets? (In church last week, I was holding Clare, who was remarkably content. When I peeked over my shoulder, I discovered she was holding the hand of the middle-aged man in the pew behind us! Embarrassed, I whispered, “I’m sorry” and tried to disengage her hand. The man smiled and said, “Oh no, she is so sweet. It was a pleasure. She grabbed my hand and was content, so I didn’t let go.”) I don’t want to let all that go either just so Clare can be “normal.” In many ways, I want Clare to be special because she is such a blessing to us and others.
Genes are a funny thing. And we know that Clare is so much more than what Williams syndrome has given her. She has the same strawberry blond hair that her Auntie Chrissy has. She has a mix of Auntie Erin’s dark blue eyes and my and Grand Dad’s green-hazel eyes. She has her daddy’s curls. She has the look of my deceased grandmother. My mom stayed with us for a few days after Simon was born and, one night at dinner, Clare gave my mom such a look that my mom gasped and said, “For a minute, I saw Grandma Ruegg staring right at me.” She has an incredible personality - a sense of humor, goofy, clever, downright adorable. And I know she gets all that from me.
To us, this is the face of Williams syndrome. And we love her so much!
(Warning: the quality of the video is not the greatest since it was on VHS, so I then recorded watching my TV with the digital camera. Backwards way of doing things, but it worked!)
Friday, May 18, 2007
I am bummed for obvious reasons. I had a feeling this was coming and thought I was mentally prepared. But after the doctor went back into the recovery room, I burst into tears. I am still postpartum and hormonal - that must be it! I do feel blessed that it has been 14 months since Clare last had a cath. No one expected her to go this long. Plus she has been doing so well with her development, and I know being cath-free has made that happen faster. (She went on her first bike ride with Shawn and Jamie the other day. Although she was not a fan of her helmet, she loved the ride and was all smiles! You can see her grinning away at me between the spaces in her seat.) No cath is fun, but I think this one will be a whole new ballgame since Clare is older and much more aware of what's going on. Plus I won't be able to stay in the hospital with her this time because I need to be with my nursing baby and he won't be welcome as an overnight guest! So Shawn will be the hospital parent this trip. It's going to be a new experience for us all.
Wednesday, May 16, 2007
Tuesday, May 15, 2007
Monday, May 14, 2007
Clare was supposed to get her AFO's today, but they were not ready, so she has an appointment next week. Now that she is gaining confidence and realizing the power of walking, I am hoping she will take off with the help of her braces. Clare also has her sedated echocardiogram at the end of this week. I am very nervous about this echo. Her last sedated echo was in November. I have a nagging feeling that this echo may not be good news. It has been 14 months since Clare's last cath, and post-cath, her doctor predicted 6-12 months before she needed another one. Clare has proved that wrong! I am praying she continues to prove them wrong!
Monday, May 07, 2007
I am amazed at how well both Jamie and Clare have taken to Simon. Jamie has been a big help - he loves to fetch things (most of the time) like pacifiers and blankets, as well as taking over jobs like putting the soap in the dishwasher and running it. He dusted the living room for me yesterday and rearranged all my picture frames to "make them look better." Jamie wants to be the one to put Simon to bed or carry him upstairs, but we're going to wait just a tad bit longer before we let him take over those duties!
Clare has also reacted better to Simon than we thought she would. Whenever she sees Simon, she says, "Baby" and constantly wants to pat his head and other body parts. At meals, she offers Simon her milk or a piece of food. For the most part, she has been so gentle with her new baby brother. I have only once had to tell her not to pat his head with her hard plastic Elmo figurine and she only honked Simon's nose one time so far. That's pretty good in my book! Clare is even doing better than we hoped with the whole not-hooked-to-Mommy's-hip thing. I am still not supposed to be picking Clare up or carrying her around, but we're breaking the rules a little for both our sakes. (I miss my attachment!)
Today is my first day solo with the kids - Shawn is home, but he is trying to stay out of our way for the most part and get some work done. Thankfully, Simon is my first baby who likes the sling. He is sound asleep in it right now as I catch up on all my e-mails. We took a family walk yesterday with Simon in the sling, Clare in the wagon, and Jamie on his new "big boy" bike. It worked out beautifully! We're going to venture out to the playground later today. I am unsure how it will go, but sometimes you just have to dive in headfirst.
Thursday, May 03, 2007
S~So it is 5:00am and I am up, not with Simon, he is sound asleep, but with Clare. Doesn't she know we need our sleep??? So we got home yesterday early afternoon and are now trying to find our routine again. It's funny, but you would think after having two kids already this would be a lot easier, but it is still hard to get everything in order. Oh well, who needs order? So as promised, here are the dirty little details and some pictures as well.
Teresa and I went into the hospital on April 30th about 1:30 pm. Teresa had not been feeling well the last couple of days so we thought it was time. We went in and they checked her and she was in early stages of labor - she had dilated to about 2 cm and was 75% effaced. They started her on Pitocin and then about 6:30pm broke her water. Then things started to really get moving. Teresa and I really wanted a different kind of birth experience this time. For Jamie and Clare's births, it was a real social event with all our family present in the room until the pushing started then it was just the moms. As nice as that was, we were looking for something a little more quiet and relaxed. Teresa really wanted to go without any pain medication so the relaxation was going to be a big factor. So we had the lights down low and a lot of Josh Groban and George Winston coming out of the IPOD. She used the birthing ball at first and then as things started to intensify she did some laboring in the tub (something she wanted to do for both Jamie and Clare's births but never got the chance). About 10:30 she transitioned into hard labor, by 11:30 she really wanted to push but when the doctor checked her she was only about 7cm.
As a side note here I have to tell all of you how Teresa continues to amaze me and how proud I am of what she did. The amount of pain I saw her go through and how she was able to focus herself in between contractions, how she was able to handle the pain. She is a truly an amazing woman and I am so lucky to have her.
This is where things got intense, her need to push was still there however she was not yet fully dilated. For those of you who remember with Clare, she never fully dilated, and Clare was born when she was only about 7cm. She labored for another an hour and a half. Even though she told us after every contraction she didn't think she could do it any more when the next contraction came she was as focused as if it was the first. At about 1:00am she told us she needed to push. We were all getting a little nervous at this point because during every contraction we watched the heart rate drop from 140 (normal child heart rate) to down in the 90's then the 60's. Once we got the go ahead from the doctor to start pushing, Teresa was all business. In three good pushes Simon was out. The problem with his heart rate was caused by the umbilical cord wrapped around his neck.
So Simon Joseph is here and is wreaking havoc on our family but we couldn't be happier. Jamie just loves his little brother and it is so sweet to see him concerned for him when he cries, or go over and give him kisses upon kisses. It will be interesting to see how the two bond as they grow older. They might be spitting images of each other because Simon looks so much like Jamie.
We were really interested to see what Clare thought of the new baby. She is so attached to Teresa. We were really nervous that a jealousy factor would kick in. When she first met him she was more curious than anything else, what is that strange thing all bundled up??? When we brought him home she really warmed up to him. She calls him Baby and likes to pat him on the head. So I think she will be fine.