My Big Girl

This is a quick one because I have been on the computer for far too long now. Jamie is playing at a friend's house today, and I FINALLY convinced Clare that a nap was a fabulous idea. I am currently in the middle of a big project with some old photos, but got caught up with some new photos along the way. And I just had to share.

On Father's Day weekend, we took a trip up north to Storyland, a wonderful children's amusement park. We went there last year, and Miss Clare (who was a little over two months old at the time) slept for the majority of the trip. What a difference a year makes! After sitting in the stroller and watching Jamie ride some rides, Clare got to ride one as well. We all went on the little train together, and we let Clare sit on the bench next to Jamie. What a big girl Clare thought she was! (And she is getting to be such a big girl.) The pure delight on her face says it all. She was thrilled to be sitting next to her big brother and not on Mommy's lap. I have to remind myself that she is 15 months old (TODAY!) and to let her have some independence. It's easy to forget because we still spoon-feed her, she's not mobile, and she's such a peanut. But Clare is a big girl. And she wants to be treated like one!

Now I would love to know what was going through Jamie's head! What an expression on that face!

Coming Home

Clare, Erin, and I spent the past weekend visiting our grandparents in West Virginia.

When I awoke this morning, I read in my morning prayer book about coming home. About taking a drive through your old neighborhood or seeing your old high school and feeling like you were coming home. This visit felt like coming home to me. Even though I was seven years old when we moved from W.V. to Rhode Island, the mountains must be in my blood and bones. Taking the walk from the house to the cottage (which I personally did about 100 times this trip since I forgot to bring the baby monitor and kept walking to the cottage to check on Clare while she slept) was such a familiar feeling to me. Driving up the incredibly long driveway felt like I did this every day. Even Erin commented that she kept experiencing deja vu. In some ways, it was like we had never left, and we just melded right back into the way of life on the farm.

We had a very peaceful visit with my grandparents. It was our last hurrah there before they move from their incredible farm into a house in town. As kids, we spent summers down in W.V. on the farm. My grandfather would take us to target shoot with rifles and bow and arrows. We would go horseback riding. We would stay up late playing cards or Mastermind with my grandmother. Hikes in the woods, bonfires and camping out on the Point, feeding the huge catfish in the pond, swimming (and playing beauty pageant) in the indoor inground pool. We often visited at Christmas as well. The farm covered in a blanket of snow during the winter is breathtaking. All us grandkids would dress warmly and go hide out in the snow so my grandfather and his German Shepherd Heidi could practice their Search and Rescue. All my memories run together of what an amazing place the Campbell Hill Farm has always been. It has been our vacation destination for 20 years.

We weren't able to get down to W.V. last summer with all the craziness over Clare's multiple hospitalizations. It was very special to me then to take this one last trip with Clare. I liked being able to show her a piece of my childhood, a piece of me. Although she will never remember any of it, it feels right to share it with my children. Jamie last saw the farm when he was 17 months old, so he won't remember it either. My grandparents had not seen Clare for over a year, so they were delighted (and instantly charmed) by her sweet personality. Clare was fascinated by the new scenery around her. Although she was scared of the horses, she loved playing with their hay!) Despite the exhausting 10.5 hours it took us to get home (which should have been a 3-hour trip, but there were many weather delays), our visit with our grandparents was relaxed and uplifting.

The best part about going away? Literally - coming home. When we finally landed around midnight, the two sweetest boys were waiting for us. How precious to be greeted by a little (sleepy) blonde guy who instantly wound his arms around my neck and kept repeating, "I missed you, Mommy." As great as our trip was, I knew then that the feeling I had about coming home in W.V. was outshined by the feeling of coming home to my family.

Evaluation

Clare had her one year evaluation with Early Intervention today. Her occupational therapist, Jessica, came over along with a speech therapist and physical therapist. I was very nervous leading up to this evaluation because Clare has not been officially evaluated by a team of therapists since she was three months old. We would find out today if Clare needed additional services and how delayed she is.

The therapists spent about an hour and a half playing with Clare and testing her skills. Shawn and I answered lots of questions about Clare's daily activity and what she does and does not do. You could tell that the two new therapists were instantly charmed by Clare. (She has that effect on people!) She played shy and coy with them at times and favored them with huge grins. Clare is such an expressive baby that when she is proud or happy over something she's done, it spills over and makes you so proud and happy as well. Clare showed some skills that we didn't even know she had. She did fairly well handling the amount of work the therapists wanted her to do. Clare still does not have the longest stamina and tires easily, so she got lots of little breaks.

After the playing was done, it was the moment of truth. I know I had butterflies in my stomach waiting to hear how Clare was doing. OT evaluated her fine motor skills and self-help skills. Jessica said Clare was doing great, has shown considerable progress, and is right on target for an almost 15-month old. Clare can do all the fancy tricks like transferring objects, bringing her hands to midline, claps, waves, using the pincer grasp to self-feed, and "helping" us to dress her (takes her arm out of the sleeve, that kind of thing). The only "negative" comment Jessica had was that Clare is not releasing objects. Clare will not stack toys, nest cups, or even hand you a toy. Now, personally, I think a lot of this has to do with having an older brother. Once Clare has her pudgy little hands on something, there is no way she is going to let go! So she is facing lots of container play in the future and working on releasing toys voluntarily. (Rather than us prying her iron grip off something!)

PT evaluated Clare's gross motor skills and strength. As expected, Clare is delayed in this area. She has good lower body strength, but her upper body is weak. Much of this is due to Clare's lack of tolerance for tummy time. That has always been a battle with us, especially after Clare's open heart surgery when she had restrictions on tummy time for a couple months. As expected, Clare is delayed in the area of crawling and pulling up. She has mastered sitting and is doing a nice job with rotating her body while sitting. So tummy time will continue to have a starring role in Clare's therapy!

The final evaluator was speech. Also, as expected, Clare is delayed in speech. She is at an 11-12 month level. We have heard Clare's repertoire of noises explode over the last month, so I know she is on her way to talking. Her list of words include "hi," "yeah," "da da," "jay jay" (for Jamie), an occasional "ma ma" (okay, I only heard it once!) and her newest addition - "yup." Her understanding of words is a little more progressed - she will give hugs and kisses when you ask her. She will wave when you tell her to "say bye-bye."

The most startling observation for us (and I think for the therapists) was that Clare's learning skills were on the level of a 16-18 month old (she is actually advanced in something!). The therapist played some games with Clare involving object permanence, and Clare excelled at them all. She found that darn mouse every time! Once Clare sees how to do something or figures something out, she can do it again immediately. After I brush her hair, I let Clare have the brush, and she tries to brush her hair as well. This was such an amazing piece of news to Shawn and I because we do not know how cognitively-impaired Clare will be. This is a glimmer of hope that Clare may not be as impaired as we feared she would.

At the end of the session, the therapists all agreed that Clare did not need additional services at this time. Yippee! Clare is not delayed enough in any area to warrant more time spent in therapy. Her OT, Jessica, will continue one hour of OT a week and focus on progressing Clare's skills in all areas.

So all that worry and uneasiness over two of the big things happening in Clare's life lately turned out to be for nothing. Thank you, God, for that! With the good news from her cardiology appointment and now today's good news, I feel that we are finally hitting a real good stretch of road here. And I am going to savor every last mile of it while it lasts.

Happy Father's Day

Our family has been blessed to have Shawn as the head. He faithfully goes to work every day to provide for us. He has sacrificed time and time again to be with the family. Whether it is to go to doctor's appointments, therapy sessions, or just be there on a rough day, he is always a source of support. This past week, I finally got to indulge in my Mother's Day massage and pedicure. Shawn took the afternoon off work to hang out with Jamie and Clare so I could be blissfully pampered. When I came home, he had already made dinner and it was on the table ready for me. (As many mothers know, dinnertime is the worst time of day, especially with two hungry children underfoot.) That alone earns him a place in heaven!

I knew Shawn was a keeper when he gave up his dreams of pursuing an acting career to get married and settle down. At first, I felt guilty that Shawn would make that sacrifice for me. But he always told me had bigger dreams than that, and I had the starring role. It has been a joy to see Shawn flourish as a dad. He is an amazing father. He is gentle and tender with Clare. She loves to be rocked by Daddy, especially in the hospital. He is also rough and tough with Jamie. They wrestle and tickle and giggle, having the time of their life.

Happy Father's Day, Shawn! It has been wonderful being your wife for these past 6.5 years, and incredible to watch you being a father for the past 3.5 years. Thank you for all you do! I love you!

(I would be remiss if I did not also thank my OWN father for all he has done. You have always been there for us girls, Dad. You have been a role model for how I want my husband to be as a father. I love you, Dad! Happy Father’s Day!)

(Now I HAVE been remiss. I want to also wish my father-in-law a Happy Father's Day. My other "dad" is an incredible father to his two sons, a wonderful father-in-law to his two "daughters," and an amazing grandfather. Thank you, Dad, for all that you do for our family.

Hip Hip Hooray - Another Good Echo

Clare had her sedated echocardiogram on Friday. There was (thankfully) a cancellation before us, so Clare got in earlier than scheduled, wihch meant our hungry, cranky girl had an hour less to wait. Although that created a mad dash to get out of the house, it started the morning on a good note.

Clare's echo was good news to us. That's where the hip hip hooray comes in! Her pressure gradients have not really changed since her echo three months ago. Her aortic arch (where her surgical patch is) is wide open. Her pulmonary arteries have even grown a little bit. And her cardiologist is talking about weaning her off those hated blood pressure meds! (See previous post! Which we finally got squared away, and Clare only ended up missing two doses. She did fine.) Clare did great with the anesthesia. No vomiting afterward. A little crankiness, but she settled down to nurse, then just wanted to go to sleep. The light at the end of the tunnel we've talked about is growing brighter. (I wasn't thrilled with Clare's weight gain-or lack thereof-but I am not allowing myself to worry about that until her GI appointment next month.)

The best news is that Clare does not have to return for another sedated echo for 4.5 months! That would put us in late October/early November sometime. Oh my goodness! We are so excited! That means a summer of rest, relaxation, and recreation. That means we can go to Ogunquit this year and truly have an incredible time. (Last year, we were making every effort to enjoy our beach vacation with Clare's pending cath taking place the following week.) In the meantime, Shawn is going to take Clare's blood pressure once a week. We'll update the cardiologist on Clare's numbers, and see if she can start to be weaned off the meds.

We have the best cardiology staff at our doctor's office. They really do take care of Clare and us. Our fabulous echo tech even set up a room downstairs where Jamie could watch videos in case he came with me and I was alone. Shawn came as well to the echo so we didn't need the room, but we appreciate the efforts everyone makes for us. Jamie doesn't often have the undivided attention of BOTH parents, so he was content (plus he actually turned out to be a little under the weather and developed vomiting and a high fever later on in the day, so he was very cuddly and clingy during our wait).

So, once again, hip hip hooray!

Aggravation

Shawn wrote that beautiful post this morning and I second his sentiments. But now I need a space to vent! So you're going to have to bear with me!

I was so aggravated this morning. It's the little things that get me. Clare is on a blood pressure medicine three times a day. It's a beta blocker that slows her heart down, so it doesn't have to work so hard and, thus, lowers her blood pressure. She has been on this medication for over 7 months (since her surgery) because her pressures were just really high. Last night, Shawn was dosing out her night and morning meds and there was only enough in the bottle for one dose. That alone got me riled up because there should have been another week's worth in the bottle (which amounts to 21 doses). I was also a bit mad at myself because I thought the bottle looked like it was getting low, but it didn't need to be refilled until the 20th, so I thought there would be enough, especially since it was only the 13th. Then the confusion begins.

We get most of our prescription from Brooks Pharmacy. They're close, open 24 hours, and convenient with a drive-thru window (very key with two kids!). They've been great about the majority of our prescriptions. The only problem we've had with them is that they don't regularly stock Clare's blood pressure medication. It was always a gamble with them whether it would take 1 day or 7 days to get a refill. So we chose to have that medication filled at the clinic pharmacy where Clare's doctors are. However, we dose out Clare's meds at 10pm, so the clinic pharmacy was closed by then. Clare gets a 6am dose as well, so we needed her medication that night. To get to the point, I called Brooks Pharmacy because I knew they were open. Well, surprise surprise, they did not have the medication in stock. And because it is a liquid suspension that has to be compounded specially, we would have to wait while they made sure they had the recipe, ordered the ingredients, and compounded the meds. So now we're talking about 5 days. It was worth the phone call, but it wasn't going to happen. (Well, maybe not worth the phone call because I had to deal with a snippy pharmacy tech who told me bluntly that if it was so important that Clare not miss a dose, then next time, I should call the prescription in before I ran out.) No big deal - Clare would be a little late receiving her morning dose and I would call the clinic pharmacy in the morning. They stock the med and can compound it fairly quickly.

This morning, I called the clinic. And I get Rite Aid on the phone. Rite Aid? I was calling my clinic pharmacy. Yeah, apparently sometime in the last couple weeks, the clinic pharmacy closed. They shuttled all their prescriptions over to Rite Aid. Okay, no big deal. Let's look up Clare's prescription and get that filled for you. Now Rite Aid can't locate the recipe for Clare's prescription. It's not in the big recipe book they got from the clinic. They also do not regularly stock that medication. I explained the dilemma to the pharmacist (who was so kind and patient - a very nice man named Jeff who was a bright light in a dark morning!). He said he would see what he could do and called me back. He found a company who he could order the medication through (already compounded), and they were going to overnight it to Rite Aid. So we would have her blood pressure meds at 9am tomorrow morning.

By this time in the morning (barely past 9am), I was already frazzled. Jamie was ready to go meet his friends at the playground. And Clare had spilled out of her diaper all over her Exersaucer (if you get my drift). What fun! My other bright light is Shawn, of course. Clare's cardiologist said she really didn't want Clare off her meds for over 24 hours. If there was no choice, there was no choice. But it wasn't a good idea. While driving to Burlington, Vermont (hours away), Shawn called local pharmacies until he found one that had the ingredients in stock and could compound the medication in hours. He then talked to Clare's cardiologist who wrote a 3-day prescription to this pharmacy, so we can get Clare back on her meds today.

It will hopefully all be resolved today (as of now, though, Clare has still missed two doses of meds). And I will never take it for granted again that a month's worth of meds is actually a month's worth of meds. I was so aggravated. Refilling a prescription should be an easy thing. Ensuring that we get a full month's supply of a medication should be an easy thing. As I've said before, I am under no delusions of how my psyche works. I know I am getting nervous because Friday is Clare's sedated echo. She hasn't had an echo for three months. To us, she seems to be doing great, but you never know what the echo will show. Plus she has to be under anesthesia for it because the chloral hydrate last time only lasted 20 minutes. Any form of sedation and anesthesia is very risky for Clare. Then next week, Clare has her first-year evaluation with Easter Seals. This will be a deciding point in whether one hour of OT is sufficient or if Clare needs more services (such as PT or speech). Plus we will get an official determination of how delayed Clare is. I hate the labels. They're just words, but they still hurt. Then to add on top of that, my sister Erin, myself, and Clare are heading down to WV to visit my grandparents. They are selling their beloved farm which we spent summers on as kids, so we wanted to get one last visit to the farm in before it is sold. Clare has never been that far away from home or her doctors. And on a plane. So I know there is a lot going on these next couple weeks that has me a little unsettled. It's just I can't handle the little things sometimes. I have learned how to roll with the punches on the big stuff. Why not the little stuff?

Parachute Packers

S~So, I just got back from a Sales Meeting in Newport Beach, California. Yeah, I know what you are thinking... OOOOHHHH rough life. However what I did not tell you is that this time of year is what they call June Gloom. It is the time of the year when Sunny California has no sun, none whatsoever. All day and into the night the fog off the ocean is so thick that the sun can't burn it off.

So anyway, that is not what this post is about. During the first full day of the meeting they brought in a Motivational Speaker, Captain Charlie Plumb (we will call him CCP). CCP was an officer in the Navy during the Vietnam War and, five days before the end of his tour of duty, he was shot down and spent six years in a POW camp. The same camp that housed John McCain. This man's story was amazing... purely amazing! He said something that really hit home for me and our history with Clare. He talked about how one day, he was at a diner in a small town when a man came up to him and said, "You're Captain Plumb, aren't you?". CCP said yes. "You were shot down and spent six years in a P.O.W. Camp, right?" CCP once again said yes, then he asked the man how he knew. The man simply stated, "I was the one who packed your parachute."

CCP was amazed - he never even thought of the guy who packed his shoot, and saved his life. He talked about how a parachute packer is someone who selflessly gives of him or herself to help others. This parachute packer was in the bowels of the U.S.S. Kittyhawke packing parachutes for the fighter jocks, who fly the million dollar jets and get all the fame, fortune, and girls. He then said that there are many different types of parachute packers. So it made me think of all the parachute packers I have in my life. All of you reading this. My men's group at church - these guys prayed so faithfully for Clare when she was going through her surgery and every single cath. I couldn't thank them enough. Monsignor Anthony and our family and friends. You are all my parachute packers. And I don't think I thank you enough for all your unending support, prayers. and love. It's easy now as things have slowed down with Clare to forget all that you have done for us. So today I am taking a little time to thank you, all my parachute packers! (to continue on with the metaphor) Thank you for packing my parachute so, as in times of freefall, your prayers, love, and support safe lower me to the ground. Thank you!

Thank You For Walking With Us

Thank you to all who generously sponsored Clare and us for the 2006 Easter Seals Walk With Me last night. The event was a great success (despite the weather - we were out there in our rain gear). We personally raised $2,100 for Easter Seals - an incredible amount (and I think we were the second highest individual fundraiser! Yippee!). Easter Seals is such an amazing organization that helps the lives of so many people, young and old. We are fortunate to have a fabulous OT through Easter Seals.

Thanks again for your support!

Change

Change is so hard. Our family has experienced many changes over the past couple months, especially with moving to a new house and some family issues. Now we are facing another change – this time in our spiritual life.

Our beloved parish priest is leaving our church next week. He has been assigned to a post in the Vatican (yes, in Rome!). Monsignor Anthony has been a tremendous source of support for our family over these past months. He was one of our first visitors in the hospital after Clare was born. When Clare’s heart defects were diagnosed, he willingly moved her Baptism closer, so we did not have to wait so long to have her baptized. He has come to our house and blessed Clare and given her the Sacrament of Anointing of the Sick before every hospitalization. He visited us in the hospital in Boston. While Clare was having her open heart surgery, Monsignor Anthony was leading a pilgrimage of fellow parishioners in Italy. As Clare was in surgery, they were praying for her in Assisi (Clare is named after St. Clare of Assisi). He has always had a smile, hug, and kind word for Jamie. We attended a farewell barbecue for Monsignor Anthony a couple weeks ago, and before we left, Jamie sat on his lap so they could talk. We have been so blessed to have Monsignor Anthony in our lives.

I know Monsignor Anthony is destined for great things, but I am saddened that his journey in life will no longer be part of our journey here in Manchester. Under his wing, our church has grown and flourished, as has our faith. I know both our children hold a special place in his heart, and that he will always be with us spiritually. And if we ever make it to Rome someday, we will have our own tour guide at the Vatican! Thank you, Monsignor Anthony, for being a true friend to our family. Thank you for loving Jamie and Clare – for showing a little boy firsthand how Jesus loved all the little children. Thank you for holding our little girl in your prayers time and time again. May God watch over you as you begin your new journey. We will miss you.

They're Here! They're Here!

At 14 months old, Clare is finally cutting her first tooth. After waiting so long for this event, I expected something grand for the big arrival – fireworks, a parade, maybe a brass band or two. What I did not expect was that Clare would cut FOUR TOP TEETH AT THE SAME TIME! But that’s exactly what she’s doing.

Clare has been cranky on and off this past week, and we have noticed her fingers are always in her mouth – two good signs of teething. Yet since we’ve thought Clare was teething since she was three months old, I really didn’t think this was the real thing yet. At dinnertime tonight, she just wouldn’t settle down and wouldn’t eat. Shawn gave her some Tylenol thinking that maybe her gums were bothering her. The Tylenol did the trick, and Clare ate dinner. When I was getting Clare dressed for bed, I happened to look into her mouth and saw her top gums. (Okay, I was able to look into her wide open mouth because Jamie was giving her licks of his lollipop.) That’s when I saw them – four top teeth breaking through those gums. And from the looks of it, the four bottom teeth are not far behind! No wonder she was a cranky little girl. I guess if you’re going to wait 14 months to get your first tooth, you might as well work on four (or even eight) of them at the same time.

Little Inia

Clare has become a Little Inia. Exactly what that is, I have no idea!

Auntie Chrissy gave Clare swim lessons for her first birthday (complete with an adorable pink bathing suit!). We enrolled her in the YMCA baby class (called the Shrimp Kipper Inia Class) five weeks ago. It's a stretch to say Clare LOVES swim class, but she does seem to enjoy it. The first week, she was all business and very serious about this new experience. We have taken her in a swimming pool twice before, but both times, they were hotel pools and a little chilly. Clare was definitely not fond of those experiences. She has become a huge fan of bathtime now (loves to bounce and splash in her little tub). From taking Jamie to swim classes when he was a baby, I knew that the YMCA pool was the temperature of bathwater, so I thought Clare would at least tolerate it. Now that we have been doing swim for a few weeks, Clare enjoys it more each time. This morning, she kicked and splashed and even smiled a couple times at her teacher.

I have learned that there are all kinds of therapy out there. Occupational therapy, physical therapy, speech therapy, music therapy, pool therapy, equine therapy, developmental therapy, and who knows what else. I have heard other parents say their child receives as much as 10 hours of therapy a week. Clare has one hour of occupational therapy a week. That's it. And right now, that's okay by me. Clare's OT, Jessica, provides great feedback on how Clare is doing. Clare lights up when Jessica walks in the door. Jamie also loves Jessica because she always has a new game or toy just for him. In the busyness of our life, OT guarantees that Clare will have that time devoted to helping her develop (don't get me wrong - we work on Clare's skills outside of therapy, but it's not that structured). Clare's one hour of OT is something we all eagerly look forward to. But I doubt I would feel the same way if our life revolved around therapy sessions. There may come a time down the road when Clare does require more structured therapy. Again, that's okay if that's what she needs to function in this world. But I like the idea of having a little more freedom, especially since we've slowed down on doctor's appointments. I also think it's good for Clare to not have her life revolve around therapy sessions and doctor's appointments. She may be a child with a disability, but she's still just a child and should be able to do the normal things kids get to do.

For now, Clare gets so much out of doing less structured activities. She loves going to Jamie's playgroup because she gets to watch the other kids. (I am learning that peer pressure can be a wonderful thing sometimes! Clare may just want to crawl since she's now the only baby not mobile!) Jamie is a great form of therapy (and entertainment) for Clare. He loves to talk to her and try to get her to mimic him, with sounds and actions. We sing songs and dance around the living room, which Clare loves. And we are enjoying swim class. It is a relaxing time for both of us (even though it's Shawn in the photo, I take her the majority of the time). Clare loves to watch the other babies and hang out in the warm water. And if she gets an occasional kick or splash in there, that's an added bonus. Hey, isn't that physical therapy??