Easter Seals Walk With Me

A quick plug for the Easter Seals Walk With Me again this year. We were very successful last year in our pledges and raised a couple thousand dollars for the 2006 walk. We are hoping to beat that amount this year. (And not because we raised the top amount for individual walkers and want all the glory!)

Easter Seals has truly been a blessing in our lives. I read about families who have trouble finding services or do not get along with their therapists. We have never had an issue like that. Easter Seals is our Early Intervention Program where we live. Clare was connected with the organization when she was three months old, a few weeks after her diagnosis. She began her first occupational therapy session at four months old and has been going strong ever since. We all loved her OT from the start. As Clare got older and walking still seemed in the distant future, Easter Seals (without any headaches) added physical therapy to Clare's services. Again, we hit it off with Clare's PT from the first session. In addition, Clare's therapists have aided us in connecting with the swallow specialist, nutritionist, and most recently, the orthopedic surgeon. They are both ready with research and other resources that we may need. All of this is to NO COST TO US. We do not pay a dime for Clare's services through Easter Seals. Medical bills can be very stressful and quite a damper on a family's financial situation. There have already been many, many bills due to Clare's multiple caths and surgery. Not having to worry about how many therapies we can afford or how many our insurance can pay for has been a big load off our mind. We can concentrate instead on making sure Clare gets everything she needs to thrive. Therefore, it is very important to us that Easter Seals continues to be able to offer this same exceptional service to other children (and adults) like Clare.

Please donate to the walk - there is a link to your right that takes you to our personal Walk page. Thank you for your support!

(Nothing to do with the walk, but, yes, we are still waiting for this baby to make his grand appearance!)

Welcome to the AFO Club

Clare is joining the ranks of the AFO Club - not as glamorous as it sounds. In this case, AFO stands for Ankle Foot Orthosis. An AFO is a plastic brace worn on the lower leg and foot to support the ankle and hold the foot and ankle in the correct position.

Clare had her orthopedic consult and x-rays today. We liked the orthopedic surgeon. Although he was brisk and jumped around quite a bit (as Shawn put it, it was as if he was saying what was in his brain as fast as it was going through it), he was thorough and good with both Clare and us. After examining Clare and watching her sit and stand, he thought her standing and sitting were both very good positionally. He confirmed what we already knew that Clare has low tone and very flexible joints. After Clare had her hips and spine x-rayed, we met with the doctor again to go over the films. Her hips and spine looked great, so there is nothing skeletal going on that is preventing Clare from walking. His opinion is that Clare's three big obstacles are her low tone, flexible joints, and confidence in herself. Therefore, he recommended she start wearing AFOs to support her feet and ankles when she is standing and walking. Hopefully with more support, Clare will feel more confident and start cruising at least. Although I am not thrilled that Clare needs "special shoes" to walk, if it gets her to walk, then I will be thrilled.

Clare is getting fitted for her braces next week and, once they come in (probably in a couple weeks), we'll start her in them a couple hours a day. Her PT and OT will continue to work with her in her braces on walking and on developing her arm strength so she can pull herself up into a standing position. Although the doctor warned that Clare may still be a year (or even two) away from walking independently, we are hopeful this is a step in the right direction. Clare is so curious right now that I know she will love being able to walk once she knows she can do it. Then I know I'm the one who's in for it keeping up with her!

My Personal Top Ten

Top Ten Things I Love About Jamie:

1 - He loves any and all superheroes. He will graciously allow me to play Storm, even though she is one of his favorites. But I will be informed that I am Storm #2, as he is Storm #1.

2 - Amazingly, he can be Storm #1 as well as Spiderman, Colossus, Nightcrawler, and all four Ninja turtles at the same time.

3 - He will run and run and run around outside until his cheeks are bright red and he is hot and sweaty. He will come to me and say, "Whew, I'm tired," then take off and run some more.

4 - His new favorite food is peanut butter and jelly sandwiches with Trix inside. And, yes, I do make them for him.

5 - He would entertain us for hours with his shows. He has the best imagination of any kid I know and loves to perform for us.

6 - He refuses to wear the socks with writing on the bottom (as in the Old Navy socks I love for the kids) since he cannot slide on the hardwood floors in them. But he assures me the socks are okay for bedtime, as he does no sliding in bed.

7 - His split personality - he likes to wear Batman underwear, but a Superman t-shirt so I am kept guessing all day long who he really is. And watch out if he has Fantastic Four band-aids on as well.

8 - He has become Daddy's grill buddy. I love seeing the two of them out there in their lawnchairs, with their beverages (beer for Shawn, juicebox for Jamie), grilling us dinner.

9 - He is the greatest big brother. He is Clare's protector. He loves to sing to her, comfort her, hold her, and loves to help her walk by holding her hands. He is constantly kissing my stomach and telling me he misses Simon and when is he going to come.

10 - Even though he is growing so fast, there are still moments when he is my baby. He still likes me to sing him a song before bed and tuck him in. He lets me give him hugs and kisses whenever I want to. He allows me to be his personal slave a good majority of the day.


As I lounge around the house in my last days of pregnancy, I know it is hard on my family. I can't bend over to pick anything up so Jamie has become my fetching boy. If Jamie needs help and he is upstairs, it takes me about an hour to get up there. But rarely do they complain, and I love you all for that! I am so blessed by my family.

Beach Bums

Jamie, Clare, and I went to the beach today. I cannot believe I am actually saying this since last weekend, we were still shoveling snow off our deck. It reached 90 degrees today! A brief taste of summer for us since I think winter is over. (I say that hesitantly because you never know.)

If you had asked me last week, lugging two kids plus all our gear plus my hugely pregnant self to the beach on a Monday morning would totally not be in my plans. I was in the habit of keeping my Mondays clear of appointments so I could take the girls (K - it was so weird not to have them today! I almost called you to ask if I could take them, then I saw that YOU didn't even have them today). However, I no longer babysit on Mondays, so we had the whole day looming before us with absolutely nothing written on the calendar. Which can be daunting sometimes. What are we going to do all day? No doctor's appointment, no therapy session, no scheduled playdate, no swim class? We are usually so busy running around that a day of nothing planned can be wonderful. But lately, I need activities to fill our day or else we all go insane. I just don't have the physical and mental energy to entertain Jamie and Clare all day long. So when my friend Jamie said last night that she was bringing her girls to the beach today, I thought it sounded like a great idea. Who knows when we're going to get another perfect beach day, plus I am even more wary of lugging THREE kids to the beach by myself this summer!

And it was a perfect beach day. Jamie was happy as a clam (pun intended!). He and his friend Elyza played in the sand and in the water (the water was icy cold, but that didn't stop Jamie). Jamie would have stayed all day except Clare was not as happy at the beach. She enjoyed herself for the first hour or so - under the umbrella eating Pirate Booty and Trix. I tried to get her to play in the sand, but she wanted nothing to do with it. That surprised me because she loves the sandbox at home, but I think she didn't like the wet sand. I tried taking her down to the water, but when I discovered the water was too cold for even me, I knew there was no way Clare would like it (unless it's bath water temperature, she won't go in a pool). So it was back on the beach blanket for us. Even though Clare was in the shade for the majority of the time, her little cheeks were so flushed. The heat affects her so quickly and drastically. Eventually, I had to force Jamie to leave or I thought Clare would pass out. Maybe it was too much on her after a week of being sick, but she was finally acting like herself yesterday, so I took a chance. Even though Clare was miserable for the last half-hour or so, our first trip to the beach this year on a whole was great. And it wasn't as hard as I expected although I think everyone will sleep well tonight! Now if I can only make it through the rest of the week! Clare has her orthopedic consult in Boston on Wednesday, so the baby is under strict instructions to stay put until we get back home. I don't think it's going to be a problem because I am not due until next Friday, Jamie was six days late, and Clare was nine days late, so we still have some time before I expect the baby to come.

Busy Doing Nothing

It was a long, busy week, yet I spent most of it sitting down doing nothing. Clare came home on Wednesday afternoon, yet she still had some recovering to do. She spent the rest of the week and this weekend very tired and crampy. She is on the mend, but was only content when sitting with me - on the couch, on a lawnchair, in the rocking chair. It didn't matter as long as she was in my arms. I feel so helpless when my children are sick and in pain and there is little I can do to make them feel better. The only thing Clare wanted was Mommy, so that's what she got. I am so proud of Jamie in times like these because he entertained us with numerous shows - superhero shows, dinosaur shows, pirate shows. Thankfully the weather is finally spring-like, so he was able to expend lots of energy running around outside. It's not easy for a rambunctious four-year old to be cooped up and watch his mom and sister just sit there all day.

It was hard on me, too, because as much as I enjoy sitting down, sitting with almost-20 pounds resting on top of your huge stomach gets pretty uncomfortable after 10 minutes. Plus with less than two weeks before my due date, I am totally in nesting mode. My to-do list is miles long. However, very little of it was accomplished this week. It may have felt like I did nothing all week, but I have to remind myself in these moments that I am really doing my primary job - being the mother of these precious children, whatever that entails.

Just A Quick Visit

Clare is home from the hospital. Just a quick 30-hour visit to get some fluids in her. She is still very tired, but is definitely feeling more like her old self. She was able to keep down some yogurt and milk this morning, so she's making steps in the right direction.

Now we're going to keep praying that no one else, especially pregnant me, gets sick!

Getting Through Today

First of all, thank you to all my wonderful friends and family who participated in a Mother's Blessing last night for me. As I get closer and closer to the birth of our baby, I am reminded again and again how I need the love and support of those closest to me. The showering of love, prayers, kindness (and pampering products and frozen post-baby meals!) was incredible. I couldn't do this without you!

Clare is in the hospital today. She fell victim to a stomach bug that has been going around. She showed minor symptoms Sunday night and it became progressively worse. She woke up this morning at 4:30am, but could do nothing but lay in her crib and moan and whimper. She did not want to be touched, so I brought her into our bed, where she continued to do the same. After two hours of this (and upon realizing that her diaper was completely dry after 12 hours of sleep), I called the doctor who told us to bring her right to the ER. Given her medical history and the condition of her blood vessels, dehydration is not something we can mess around with with Clare. She was admitted to the pediatric ward and is currently being treated with IV fluids. Her electrolytes are expectedly low from not being able to keep anything in, yet having more and more come out. Right now, we are waiting to hear if she is to stay overnight or not. I am staying home with Jamie today, so if she does need to stay overnight, I will be the one to stay in the hospital with her. In my last update from Shawn, he said that Clare seemed to be perking up a bit after multiple bags of fluid, but there was still no decision whether she was going to be released or not. Hopefully the fluids will do their trick and Clare will be home again soon.

Bubbles

I love watching Jamie and Clare have fun together!

Animal Checkout

Jamie had his annual checkup a couple weeks ago, and Clare had hers last week. So we’ve been reading our Winnie-the-Pooh story about when Pooh gets his “animal checkout” (Pooh’s term) to prepare for the upcoming visits.

Jamie was counting down the days to his doctor’s visit. We even drew a band-aid on the date on the calendar in his bedroom so he knew exactly when it was coming. I think someone has definitely had to sit through more than his share of doctor’s appointments that were not his. Now it was his turn, and he couldn’t have been happier – three shots and all! Jamie has never had a problem growing and is the picture of health! We were relieved to learn that many of our parenting challenges with our four-year old are normal and all about power. He knows we have it, and he wants some. (Don’t we all!) Clare was not feeling the greatest the day of Jamie’s appointment (more teeth coming through), so Shawn took Jamie alone. The report was that the patient did great. Healthy as a horse!

Clare’s appointment, of course, took much longer. We had a list of about twenty topics we wanted to discuss with the pediatrician. Number one was the GI issue. Clare’s weight was 19 lbs, 4 oz, which we were very happy about (a gain of 5 ounces in two weeks, which is good for Miss Clare). Hopefully the days of gaining only an ounce every 3-4 months are over. The pediatrician agreed that we should not tinker with her Prevacid dose at all since it is working. We went over the studies regarding Prevacid and calcium absorption with him, and he agreed that this was not an issue to worry about right now. He also agreed that Clare does not need a GI doctor at this time. Yea! Our pedi handles the medical issues all the time that the GI is supposedly handling in Clare’s case. Other than Clare’s heart and thyroid medications (which we obviously do need an endo and cardio involved with), our pedi regularly prescribes the other medications Clare is on and is the sole doctor of many children on these prescriptions and with these medical issues. So we are done with the GI (and I happily cancelled our follow-up GI appointment). Of course, this is with the understanding that if Clare does develop more serious GI issues, we start seeing the GI again. We readily agreed on the condition that we get a referral for a new GI. All parties were satisfied!

We had some other concerns regarding Clare, but nothing too major. Her pedi is interested in hearing the results of the orthopedic consult which is in a couple weeks down in Boston. Plus we are going to consult with Clare's cardio about possibily taking her off her blood thinner or switching to aspirin, now that Clare is two (she was originally supposed to be on her blood thinner for only three months or so - it's been 19 months now and counting). Shawn is allergic to aspirin, which is why Clare was put on a different medication. But our pedi feels that the age of two is a good time to test out the aspirin, if the cardio agrees. We also want to move forward with getting Clare's tongue released, so it does not inhibit any speech or feeding skills. Again, the cardiologist has to approve the procedure, but we're hoping our pedi can convince her. Since Clare is now two, it should be a fairly simple office procedure (okay, maybe not to Clare, but compared to other things she has been through!).

Other than that, Clare is doing great. She finally received her MMR vaccination (we had delayed until she was 2 because of the possible link between the vaccine and autism - no sense taking a chance with something she may be at a higher risk for). We were surprised to hear that her speech is almost right on target for a typical two-year old. The pedi looks for about 30 words at the age of 2, and Clare has around 20. She is not putting words together much yet, but we were pleased to hear she wasn't that far behind. Normally, Clare would not need to go back to the pediatrician until she is 3, but we are doing a 6-month in-between visit. Clare likes to keep us on our toes!

The photo has nothing to do with Jamie and Clare's doctors appointments, but we finally got this photo back from the photographer, and I just had to share my beautiful children with everyone!

Hop Hop Hop

Snow for Easter. But not at Christmas. Isn't that the way of the world? We still had a fabulous Easter (hosting at our house for both families as we usually do) and did our annual Easter Egg Hunt inside for Jamie, Clare, and our two nieces, Jasmine and Alex. Jamie was the master hunter of the day, finding over 20 eggs (we colored and hid five dozen). Clare, with help, enjoyed finding eggs as well. And throwing them in her bucket. And banging them together until they cracked. I predict lots of egg salad in our future.

Even though it can be a lot of work, Shawn and I always enjoy entertaining. It was a nice day with our families. (We missed you, Christina and Tee Jay! I think the egg biscuits turned out okay!) Easter baskets were passed around, Shawn grilled an awesome lamb, and the rest of dinner was delicious. My dad also brought up two dozen Krispy Kreme donuts for Clare (I admit I ate one or two) but, really, what's better than eating Easter candy for breakfast, lunch, and dinner? Jamie has decided that sitting for posed photos is not really worth his time, so this is truly the best photo we got of both kids together. But they did look cute in their Easter outfits. As Clare gets older, I love watching her interact with the family more and more. She is such a ham, just like her brother. At one point, Jamie was off running around with his cousins, and Clare held court in the living room, surrounded by seven adoring adults. She grinned and babbled and just charmed everyone. When she starts walking, watch out!

Not that I am counting down the days or anything, but Easter marks four weeks to go! I have to say, though, that I am feeling great. Other than the usual pregnancy woes, it has been a fairly easy almost nine months. Of course, I am looking forward to the arrival of our baby boy, but I am also trying to enjoy these last few weeks of pregnancy. Although Shawn and I want more children, you never know if this is the last one, so I don't want to rush it too much. Plus I know that a new baby is an adjustment for all, so I want to enjoy these last days as a family of four.

Wishes Do Come True

We gave Clare a sand and water table for her birthday. There is a rice table at the local children's museum which Clare recently discovered was great fun. She loves to play with the rice and drive the trucks around in it. And the table is the perfect height for her to stand at it while holding on. Plus she always enjoys playing in the popcorn kernel bucket in the sensory room, so I thought a similar type table would be a terrific idea for a birthday present that doubles as a therapy toy. Jamie helped me pick it out (thus the castle and dragon theme) and couldn't wait to give it to Clare (and perhaps play with it himself?).

We set the table up the day after Clare's birthday and filled it with just water. (There is a space for sand as well, but we're debating sand versus rice versus beans... we'll see who wins!) Clare had a blast (and Jamie, too). She was laughing and grinning and making a grand splashing mess. I dressed her in her raincoat to avoid a soaking, but by the time dinner was ready, Clare was drenched from head to toe. At least the table was a huge hit!

And wishes come true for all. As I mentioned in an earlier post, it was a disappointing winter for Jamie. He longed for snow and desperately wanted to build a snowman. Which is all fine and good in January or February, but it is downright cruel in April. Nonetheless, here we are today. Shoveling out under inches upon inches of snow (because, of course, the snowblower had to break), sweeping snow off our patio furniture and outdoor toys that we pulled out last weekend to enjoy the gorgeous spring weather, burying the six dozen eggs and other groceries I just purchased under the snow on our deck to keep cold since we lost power (indefinitely it seemed, but thankfully we are back on now). Yet it was stunningly beautiful this morning to wake up blanketed in snow - wet, heavy snow that draped on all the branches and bushes. The perfect kind of snow for building a snowman. Unfortunately, not the perfect kind for Easter egg hunting.