Friday, August 31, 2007
Thursday, August 30, 2007
I have my short answer of, "Clare's doing great. She started walking and is so thrilled to be mobile." That is usually enough to satisfy most people's question on the status of Clare. But there are many times, when I am attempted to say, "Clare's not really doing that well. She has started walking, which is so exciting, but her heart is giving her trouble. We notice she is very tired most of the day. Her fatigue causes her to be more sensitive and easily frustrated, so we deal with many temper tantrums. Especially over eating. Mealtimes are a battle with Clare. Her heart is working so hard that even going outside on a hot day is a disaster. Which is hard on the rest of the family because it makes summer outings that much more difficult. And that's been tough with Jamie, who loves to be outside and wants to go to the playground and swim in his pool around the clock. So every day is a battle of conscience for me. Make Clare miserable for 30 minutes so Jamie can have his bit of sunshine, but then keep Jamie cooped up in the house for the rest of the day, so Clare does not go into cardiac arrest. The cardiologist made us so scared about keeping Clare out on a hot summer day, that we have forgone the rest of our summer activities - no beach, zoo, parks. Thankfully fall and the cooler weather is in the near future as well as Clare's catheterization in two weeks. We will be glad to have all that behind us. But, I guess, Clare is doing okay."
I just feel incredibly selfish and rude if I burden other people with our worries about Clare. There are many people who do share our worry and pain (mainly our family), and I already hate casting that shadow over their lives. I know people truly do care about Clare and our family, and that is why they ask the question. Yet how much do they really want to know? I think I need to revise my short answer to something like this, "Clare is hanging in there and making progress, but she could still really use your prayers."
Tuesday, August 21, 2007
(Okay, enough, he is only going to be gone for 2.5 hours three days a week, but it sounds like an eternity to me!)
Thursday, August 16, 2007
The Bad - Of course, with more walking comes more tumbles. Clare is not as afraid to fall anymore, but she does get banged up quite a bit. She concentrates so hard on walking that she does not always see things lying in her way. Little items can trip her up as can the thresholds from room to room or simply going from the hardwood floor to the rug. One of her PT exercises is to get Clare to take more notice of her surroundings and potential obstacles so she does not fall so much!
The Ugly - And with the falls come countless bruises and cuts. Currently, Clare is sporting a cut lip, scraped chin, huge bruises on her elbows and knees, and smaller bruises scattered in different place. We had her cardiology exam and echo this morning, and I showed her cardiologist all the bruises and explained that everytime Clare gets cut is a bloody nightmare (literally) because of the Plavix, Clare's blood thinner. When Clare was first put on Plavix (at five months old), it was to prevent blood clots in her stents. She was not put on aspirin (which is much more common) because Shawn has a severe aspirin allergy. We didn't need that complication if Clare was found to have one as well. Clare's cardiologist feels Clare still needs a blood thinner, but is willing to explore other options. So six weeks after Clare's next cath, we are going to try a low dose of aspirin. I am very nervous about this, but if Clare has no reaction and can tolerate aspirin, she will do better with the bleeding out issue and won't look like a battered child every time she has a fall.
It has been a busy week for us. As I said, the feeding team came out yesterday for their follow-up. I dreaded this visit because Clare has made very little progress since they were here six months ago. In some areas, she has gone backwards with her eating. Without going into all the mundane details, what the swallow specialist sees is that there is some serious sensory processing going on when Clare eats. Clare is so fine-tuned to everything she puts in her mouth that she can find the tiniest piece of carrot in vegetable cream cheese. So many oral exercises are being added to Clare's OT regimen - we have silly straws, horns, kazoos, bubbles, dippers, mesh feeders. Plus we are going to start serving at every meal three things that are different tastes, temperatures, and textures (the three T's) and encourage Clare to alternate between the three. Since Clare flatly refuses to eat fruits or vegetables, we also have to become pros at hiding them so she gets the nutrients (since our smart girl also refuses to drink Pediasure, Carnation, etc. and prefers the simple vitamins over a more complex one with all the vitamins and minerals). Clare will notice one carrot shred in her pasta - however, Shawn successfully pureed a carrot so well and mixed it into Clare's mac & cheese, that she had no clue. The color was slightly different but the texture was identical, which is key, or Clare will reject it. This morning, I pureed two banana slices into her beloved milk. The taste was only slightly altered, but Clare did not seem to notice. One carrot and two slices of banana - yea! It's a small accomplishment. (I put some of this boring info in for my fellow WS-mommies in case you are facing similar issues.)
Despite all our struggles and frustrations with eating, Clare is growing. Since her last cardiology visit two months ago, Clare has gained one pound and grown one inch (very good for Clare!). She is also finally growing out of her 12-18 month clothing and jumped two shoes sizes! We are excited about all the growing she is doing, although we have to have her AFO's adjusted because she is growing out of them as well.
So now all the medical appointments will slow down for a couple weeks until Clare heads back into the hospital next month. Her echo today showed that she needs more dilations done to her pulmonary arteries. The pressures on the right side of a normal heart are usually 25% compared to the pressures on the left side. Clare's right-sided pressures are 200% of those on the left. The right side of her heart is bulging into the left, it is working so hard. Other than minor fatigue (which we think is due in large part to her increased activity) and having a hard time with the heat (the heat increases her cardiac output), Clare herself is doing well, so we will hang in there until mid-September.
Monday, August 13, 2007
It is normal to have dreams, hopes, and goals for your children. I just never had to write these goals down before. But every six months or so, here we are discussing finite goals for Clare and committing them to paper on her Individualized Family Support Plan. A plan I sign that down the road is a testament to Clare's successes and failures. Our walking goal for Clare was her second birthday in March, then my sister's wedding in June. When those events passed with no walking in sight, I shelved that goal for a while. I knew Clare would walk eventually, and I was setting myself up for disappointment each time my deadline came and went. When a few weeks ago, Clare started to cruise, I hesitantly thought about how neat it would be if Clare was walking by Halloween. I could picture her in her little Supergirl costume (yes, Supergirl because Jamie has already decided that he will be Batman and Simon will be Spiderbaby), carrying her trick-or-treat pumpkin, and walking down our street. I cautioned myself about getting too carried away with my daydreams. I never believed Clare would be walking by the end of the summer.
As we gear up for Clare's six catheterization, I can recite the laundry list of what is "wrong" with Clare. There is an even longer list of what can go wrong. Yet despite all these lists, I still choose my child and the wonderful (if, at times, very stressful) life we have because of her any day of the week. I don't know what the future holds for Clare or what she will be capable of. It's a fine line we walk between having our hopes and dreams for Clare, yet not letting those hopes and dreams cloud over who Clare really is. Allowing Clare to be who she is, not who I expect her to be. And all this at the same time as not underestimating Clare and what she is capable of.
At the end of each day, I reflect how I have this amazing opportunity to watch Clare grow and learn and be whoever she is going to be. I look forward to the future of all the possibilities and potential Clare has to show us. I will still hope and dream, but I will also listen to Clare and let her lead the way.
Sunday, August 12, 2007
We are blessed by the joy of a baby in our house again. I forgot all the wonderful feelings and experiences that come from having a baby:
How sweet you smell, even when we forget to bathe you for a couple days because we are so busy chasing your brother and sister into the tub.
How one big grin and one little giggle can make my whole mess-of-a-morning beautiful again.
How determined you are to roll on your tummy (which you accomplished) but cannot figure out how to roll back (still working on it!).
How, even though you are only three months old, you have your own (loud) opinions about what you want (such as NOT to be put into the bouncey seat so Mommy can take a shower).
How warm and snuggly you are when you are tired and want to nurse or rock to sleep.
How one slobbery, smiling, lovely chunk of 16 pounds can make our family so happy.
We love you, Simon!
Monday, August 06, 2007
Now that we have children (and a 4-year old who soaks up the sun), I spend many days outside. I actually sport a small tan (and, yes, I have had my major sunburn already). We have had an incredibly jam-packed summer with more to come. At the end of the day, I am exhausted and ready for bed, yet I look forward to the next day and what it will bring. I am actually enjoying summer! Last week, we had two outings to the zoo (different zoos with different sides of the family). I love that both Jamie and Clare are at an age to really enjoy themselves on our family trips. We have seen such a difference in Clare this year with our summer outings. She is still very heat- and sun-sensitive, but as long as we keep her cool, she wants to be active and involved in all we do. At York's Wild Kingdom, we ended the day on the rides. The super big slide was voted hands down the best ride there. (You know the kind of slide that's taller than your house and you get to sit on a burlap sack so you go extra fast.) Clare sat on my lap the first time down. She was very unsure as she watched her brother and cousin go screaming down the slide. Our turn came and off we flew. Although I could not see her facial expressions, when we stood up, she looked at me, and hopefully signed, "More?" How can you resist? Just like Jamie and their cousins, Clare went down the slide again and again. Thankfully Auntie Becky was willing to go on the spinning rides with Jamie. After doing the Fun House, I was all set on rides, thank you.
Clare is gaining her confidence back with walking independently. After her two bad falls a couple weeks ago, she has been reluctant to let go of hands and furniture. But this past weekend, she walked repeatedly between my dad and Shawn. Since coming home, she walks around much more. We do see her stamina wavering towards the end of the day or after walking around a bit. She spent a couple hours on a playdate yesterday (her first playdate by herself - no Mommy or brothers with her - what a big girl!), and came home totally exhausted and went right to bed for three hours. We don't know if it's the increased walking or her heart acting up again that is the cause of her fatigue. If it is her heart, we're not worrying too much because she has an echo in two weeks and her next catheterization is scheduled for September 14.
This coming weekend, we are driving down to the Worcester Ecoterium to participate in a Congenital Heart Defect day with other children who are or were patients at Boston Children's Hospital. Although we have done many WS events now, this will be our first "heart" event. I am always amazed at the number and variety of heart defects there are and how many children suffer from a congenital heart defect. It is events like these that reinforce how blessed we are to live where we do and that ensures Clare receives care from the best of the best.
Friday, August 03, 2007
* Jamie has graduated to the next level of swim classes. He is now proud to be a Ray (or sting ray, as he informed me).
* Taking all three children to a children's theatrical performance and no one cried! (With two children sitting on my lap for the majority of the show.)
* Simon is sleeping in his own crib, in his own room, almost through the night. And that goes for naps, too - no more napping in the car seat in the dining room.
* Finally figuring out the best way to go grocery shopping with all three children and still have room in the shopping cart for more than just a gallon of milk.
* Clare has started walking. Albeit slowly, sometimes while complaining loudly, and not all the time, Clare has started walking.
Life is good.