Wednesday, January 31, 2007

Birthday Arrrrrrs

This is a belated post since Jamie turned four years old yesterday! Happy Birthday, Jamie! We had his birthday party over the weekend and were very happy that Jamie came to the party, instead of the Human Torch, who is the usual inhabitant of that small body these days!

Jamie's party was a blast. It was pirate-themed, and Shawn did an incredible job putting games together. The kids launched parrots at a pirate ship, walked the plank, and attacked a treasure chest pinata with a sword. I have to admit I was very proud of the pirate ship cake I made. Jamie was in pirate heaven. This was his first real birthday party with all his friends. He was so excited for weeks. We marked the party day on his animal calendar in his room and, every night, he crossed off another day. Each day, I repeatedly answered the question - "How many days until my pirate party?" When party day came, he wanted to help us do everything to get ready for his friends to come over.

I say this every year, but it's amazing how much a child grows. Jamie is such a delightful four-year old, and I am not just biased because I am his mother. He is a sweet (for the most part) big brother to Clare. He adores his little sister and, as long as she's not destroying a tower he's building or knocking over his dinosaurs, he patiently plays with her. Jamie has also enthusiastically embraced the coming of the new baby and cannot wait to meet his baby brother. He constantly hugs and kisses my stomach, wants to talk to Baby Simon, and does things for Mommy (like bending over to pick up fallen toys or bringing in small bags of cat food when my arms are full lugging groceries and Miss Clare). Many times, he does these things without even being asked, which is a huge thing for a four-year old! We see the best of both of us in Jamie - smart and considerate like his Mommy and imaginative and funny with a flair for entertaining others like his Daddy.

We love you, James Michael! Happy Birthday!

Friday, January 26, 2007


I am childless today (not counting the burgeoning belly that continues to make its presence known more and more every day). Shawn dropped off both Jamie and Clare to his mother's in Maine today. This is the first time I have had an entire day to myself since Clare was born (and she will be 22 months old next week). To top it off, Shawn informed me yesterday that he also booked me an appointment at my favorite spa for a super-duper pedicure. It has been a rough few weeks, both with getting more uncomfortable pregnancy-wise and worrying over Clare. Shawn is an amazing and astute husband that notices these things. (Maybe it was the fact that yesterday morning, as he turned around from making his coffee, he discovered me crying into my bowl of Cinnamon Toast Crunch. Just a rough night and day.) I was nervous sending the kids off this morning, though. I knew Jamie would be fine. He has gone to Mimi's many times without Mom or Dad and loves it. Plus Uncle Brian was going to be there, and he is one of the few people in this world who loves superheros more than Jamie does! It was Clare I was worried about. She has never been away from me for this long before (hospital stays do not count and, even then, she was zonked out). I know the apron strings have to be cut at some point, especially since I will be in the hospital myself in a few short months, but it is still hard to let go. However, I admit I am enjoying every minute of my day so far!

I actually have an early update on the Clare versus food situation. We went in yesterday for a weight check (17 lbs, 11 oz, so she did gain - hooray!), and we got to see her pediatrician for the first time since she was 18 months old. As I mentioned earlier, he was out due to a broken foot since before Christmas, when the eating strike began. It was such a relief to finally touch base with him. It reminded me why he is such an awesome pediatrician. He is always ready to go to bat for us. After an hour and fifteen minutes of talking, we have a plan. (Yea!) He believes Clare may have silent reflux going on and started her on Prevacid. He increased her appetite stimulant dose to the max for her weight since we have not seen a result yet. He is arranging to have a nutrition consult and swallow specialist come out to the house to evaluate Clare (something which was last done in early 2006 when Clare has just begun eating pureed solids). And, depending on all those new things we're doing, he may order a barium swallow in the hospital as well (which could definitively diagnose reflux and/or swallow issues). We are going to follow-up with him again in a month and see if any of these made a difference.

P.S. For all of those who enjoyed Shawn's story about Jamie and the paper towel dispenser, he comes by it honestly. Last weekend, at Borders Books, I wanted to do a search on the computer they had available for customers to use. The screen had a couple choices on it, so I was pushing with my finger on the screen the button for a new search. After touching the screen a couple times with no results, the friendly Borders employee who was watching me suggested with a smile, "Try using the mouse." Oh, yeah, that antiquated thing.

Monday, January 22, 2007

Still Trying

I am so sick of talking about Clare's eating strike. Aughhhhhhh!

But I figured it was only fair to give an update. Nothing new. Well, a little bit new. As the doctor warned, the appetite stimulant is making Clare very sleepy. She is ready for a nap by mid-morning and will sleep for four hours (maybe even longer, but we've been waking her up after four hours). And then she is ready for bed by 6:30pm. As nice as extended naps can be sometimes, unfortunately, this means she has slept through lunch the past few days and is not interested in eating when she wakes up. The one improvement is that she does not cry through meals anymore. But she still spits out her food, just plays in the highchair, and eats barely anything. (It is afternoon already, and she has eaten nothing yet today). I am touching base with her doctor tomorrow. Most likely, he will recommend that we give Clare her entire dose of medicine right before bed (instead of splitting it up into two daily doses, which is what we are doing now) to see if that stops the daytime sleepiness. She has her Synagis shots in 10 days, so we will get a weight check at that appointment. No eating updates until then!

This morning, Shawn was out bright and early to be the first person at the preschool where we want Jamie to go in the fall. Today was registration day. Jamie frequently talks about when we visited the school, and Shawn and I both really like the facility and teachers. I haven't been this nervous about a school application since I was a senior in high school. It's ridiculous! We will get an answer in early February whether he was accepted into the program. I am all misty-eyed with the age-old lament of parents everywhere - "Where does the time go?" Jamie will turn four next week and is growing so fast. I am glad he is excited about the prospect of school. He is definitely ready to go. But it will be so sad not have Super Jamie around the house as much.

Wednesday, January 17, 2007

Problem Solved

Well, we hope so! We saw Clare's endocrinologist yesterday for her regular 3-month follow-up. All her endocrine things are doing well (calcium, thyroid, that stuff), so his concern was for her lack of eating. As he put it, the best advice he had for us was to "feed her more." Of course, he added, that was also the most useless advice, like telling someone, "Don't scratch." Since all her pokes and prods have come up with nothing medically, he wants to start her on an appetite stimulant. He asked when our next GI appointment was and, upon hearing it is not until March (I didn't get into how we weren't terribly thrilled with the GI at the moment anyway), he said he could start her on the appetite stimulant immediately.

Clare received her first dose this morning, so hopefully she will get the munchies soon! We should know within a week whether it has any effect on her eating.

Sunday, January 14, 2007

Tribulations of a Technically Gifted Child

S~This was too funny not to share with all of you. Yesterday while the family was at Lowe's, Jamie informed us that he needed to go potty. So him and I ventured in there and he rushed right over to one of the urinals, after he finished his business we went over to wash his hands. The sink was low enough that Jamie could navigate this chore all by himself. However he did need help with the drying. Not because the paper towel dispenser was too high, or that it was out of paper towels. No Jamie had a hard time because this was a paper towel dispenser from the "Stoneage". He went over and repeatedly waved his hand in front of it and...Nothing. So he did it again...Nothing. He looked at me with disbelief, this has always worked in the past was there some magic word? Some hidden trick? I just looked at my gifted son and said "Just pull", Yes this was a non automatic paper towel dispenser! What a marvelous world we live in!

Thursday, January 11, 2007

Long Week

It's been a long week. Besides Shawn being gone crazy hours, both kids have been uncharacteristically whiny and fussy (unfortunately this has become more common with Clare since the eating strike), and I am starting to enter that uncomfortable phase of pregnancy where bending over, jumping up and down (ha ha), rolling around on the floor is becoming more and more difficult.

I've been kind of in a funk lately over all the stress of Clare not eating. Countless phone calls and appointments with the doctor's office, bouncing ideas off my WS-mommy friends, strategy sessions with Shawn, it's all starting to take its toll. We truly cannot figure this one out. My gut tells me it's not a typical toddler thing. Her cardiologist does not feel it is either. (We did take Clare in to have an echo, EKG, the works, this past week just to rule out any heart issues - everything looked the same with her heart, but her weight was back down to 17 lbs.) We see her endocrinologist next week, so I am going to bounce more ideas off him. There are times in the day when Clare is so happy, and we see her true personality shining through. But for the majority of the day, she is either fussy and just wants to be held (preferably by me) or she is crying non-stop and nothing consoles her. Shawn and I both agree that it sounds like a painful cry. We're increasing her laxative dose this week to see if that makes any difference.

In other news, Shawn celebrated his birthday this past week. Jamie had a ball coming with me to the grocery store to pick out the cake and ice cream (chocolate cake, chocolate frosting, and Fudge Tracks Edy's Ice Cream... yummy). He helped me bake and decorate the cake. But, by far, Jamie's favorite part was eating it. He polished off a huge piece, then asked for more. When we cut some cake the next night, he decided that this was serious business and needed to eat his dessert sans shirt.

We have been visiting pre-schools for Jamie this week. He is excited to go and constantly asks questions about it. (He cried when we told him it was time to go when we visited a school yesterday, he was having so much fun being at school.) I was on the fence where pre-school is concerned. I do not feel all kids necessarily need to go to pre-school. Jamie is bright, very social, can pay attention, and listens to authority other than his parents. Shawn and I debated back and forth what he would gain from attending pre-school. I admit I am reluctant to let him go (I don't want to face the fact that he is old enough to attend school). But then I was discussing with Clare's OT one day about the fact that Clare is going to school in a little over a year, and after she turns two, we will start the transitioning process. I was stunned. Could time have really gone by that fast? And the realization hit me that if Jamie does NOT go to pre-school next year, then Clare will start school first. That cinched it. Psychologically, Jamie needs to go to school first. For his sake. He has been such a trooper with everything going on with Clare. Sitting through OT and PT sessions, going to doctor's appointments, being so loving and patient to his little sister. He knows that Clare has a boo-boo on her heart, that she needs lots of doctors, that Clare needs Jessica and Kelly to give her some extra help in learning how to walk. And he accepts all that. But we see the glimpses of his feeling left out sometimes. When he has to wait his turn to play with a toy that Jessica has brought for Clare. Or can't use the ball pit at Easter Seals because Clare is in it. Or that he is the only kid I know who is excited over going to the lab for blood work or to the doctor's to get his shots because it's his turn now. We just couldn't take the thrill of going to school first away from him. So as much as it pains me that in a little over a year, both of my babies will be in school, it's the right choice. It was confirmed yesterday, because as we were driving home from the school we visited, Clare was fussing in the back. I heard Jamie explaining to her that, "it was okay, she would go to school someday, but he was older so he got to go first."

Wednesday, January 03, 2007

On Again, Off Again

(A flashback photo to the easier eating days when meals were fun!)

Clare's eating is iffy now. After a fabulous New Year's Eve dinner and an okay New Year's Day buffet, Clare has not eaten for two days now. So aggravating!!

We had her follow-up with the pediatrician yesterday, and the news was somewhat of a relief, if not a solution. Clare's weight registered at 17 lbs, 4 oz again! That was her weight at the beginning of December before the eating strike. The pedi believes that when Clare's weight measured at 16 lbs, 15 oz last week that might have just been a loss of water weight, and not true "fat" weight. Last week, Clare had eaten nothing for ten days when she was weighed. Now that she is eating occasionally, her water weight is back on. So, in actuality, she did not lose any weight. Which is wonderful! We were so relieved to hear that news.

There is still no medical explanation behind Clare's strike. The pedi checked her ears, throat, and stomach again, but all looked good. No teeth have come through. All the blood and urine tests were normal. So, for now, we are treating it as a toddler eating strike. We're still going to limit her fortified milk consumption so she does not fill up on just milk. But, other than that, we are going to keep plopping her in the high chair 3-5 times a day and offer a variety of foods. Some we know she likes and some new foods. If she eats, great. If not, we will try again the next meal.

Tuesday, January 02, 2007

Happy New Year!

S~I always find this time of year a little interesting, everyone stays up late to watch 11:59 turn into 12:00. Even though that happens 729 other times throughout the year, for some reason this one allows everyone to stay up late and party, or eat too much fried turkey. So anyway we have started a new year. Taking a look back at last year is always kind of fun, we moved into a new house, Clare got her last Cath performed, Jamie has continued to grow and astound us with all that he can do, we welcomed two new family members ( Jack Sparrow and Midnight) we began waiting for our next family member (Simon), we left our church and joined a new one, said goodbye to a friend as he moved to another country, and we found new challenges with Clare as we got over old challenges. I am looking forward to this year. We are now settled in the house, so we can begin doing those little projects that we have been talking about, I am settled in my job so things are coming more easily, we cannot wait to see Simon Joseph come into this world (and we pray that he is our healthy one!)

Clare has also decided to make use of the New may be too soon to tell but we think the Eating Strike may be over. Starting New Years Eve she ate several bites of pizza and 1/2 of a banana, the next day she ate more banana some of Jamie's breakfast hot pocket and for lunch she ate more pizza, and for dinner she ate some White Cheddar Pasta shells. We are not sure yet whether or not too say the strike is over..we are a little too conservative for that I think. Her personality and energy levels seem to be back as well. We thank you all for your prayers and support. Teresa and I said that in many ways this food strike was more difficult than any of the heart issues (except for that one night in the ICU right after her open heart). We feel this way mainly because there was very little we or anyone else could do. It was all up to Clare!