A New One

Clare is getting a new doctor. During her OT session this week, her therapist noticed that Clare swings out her right hip frequently as she is walking. She mentioned it to Clare's PT, Kelly, who also picked up on it during Clare's PT session a couple days later. Kelly was unsure whether Clare's hip was swinging out on its own or Clare was doing it herself for more stability. Kelly suggested it would be a good idea to have Clare seen by a pediatric orthopedic surgeon. Not just for the hip but to get a general baseline of how Clare's bones and joints look through clinical evaluation and x-rays, especially due to Clare's extremely low muscle tone and flexible joints. Kelly recommended a doctor who works out of Children's Hospital Boston, so we have an initial consult scheduled with him for the end of April.

Clare's walking is coming along. As I've said many, many times before, her progress is just so slow. But at least it's progress! She does great in her new shoes. They provide more ankle support, and we've noticed that she does not walk as pigeon-toed in her shoes. Kelly discovered the power of lollipops, and her and Clare worked on walking the entire session with lollipop incentives. Clare did really great - she practiced cruising along the couch and taking a couple steps by herself towards the couch (and falling into the cushions) until Kelly wanted her to work on crawling. Clare deemed the session over by throwing a huge temper tantrum. That's my girl!

Eat Eat Eat

Clare had her evaluation by the feeding team yesterday. It has been almost a year (minus one day) since the swallow specialist and nutritionist came to our house. Last year, they offered a 6-month follow-up, but we ended up canceling it because Clare had done so well with her eating. We started the process of having Clare re-evaluated in the midst of her eating strike. Since she has started eating again (and loves it!), I wasn't too sure if there was going to be a point to the consultation, but I figured we were better off making sure there was not something that we were missing. Clare's fabulous OT came to the evaluation as well (thank you, Jess, for helping to keep Jamie entertained as well!).

After going over Clare's extensive medical history, it was time to talk about her diet. I had not realized this until the nutritionist pointed it out, but Clare only eats in whites, beiges, and yellows. Pretty funny! But not the most nutritious diet. (And I don't think her colored M&M's or dum dums count.) Her favorite foods are pasta, toast, bananas, dry cereal, cheese, pirate booty, crackers, you get the picture. The nutritionist was going to work up the numbers on how many calories Clare consumes in a day, but her bottom line advice was to get Clare to eat "more colors." Simple things such as instead of the white cream cheese we usually put on her bagel, trying strawberry cream cheese. These are certainly easy things we can try - we just needed a boost in the right direction with ideas. She also switched Clare's vitamin to a more complete one (as in Flintstones Complete... duh...) that has more vitamins and minerals, since Clare's diet is limited, especially in the fruit and veggie department. Clare's fat stores are still at 50%, which is good, in her opinion. (This is where the nutritionist and Clare's GI disagree.) The nutritionist feels Clare is proportional in her height to weight ratio. Since her fat stores are adequate, her low weight is due to having very low muscle tone. Her low weight is not putting her at a nutritional or developmental disadvantage, so it should not be a big concern. Obviously gaining weight is great, but do not stress over it. (We have our GI follow-up in March, so it's always fun to hear his opinion as well!)

Then the truly exciting part came. Clare got to eat lunch for the team. The feeding team is superb, and I don't mean to poke fun, but I have never seen people get so excited about watching someone eat. It was actually very sweet! Clare ate like she normally would (even with three additional adults observing her every move while trying to act like they weren't) - mushed her bananas in her mouth, picked at her eggs, chewed some ham and cheese but always ended up spitting it out, downing her milk, totally refused the carrots, and gobbled her dinosaur crackers. The swallow specialist said what was very exciting (hee hee) about Clare's eating skills were that Clare imposed her own limits on herself. She definitely had swallowing difficulties, but she realized that. So instead of swallowing the ham and cheese, she would spit it out. But Clare obviously likes the taste because, after she spit it out, she would try to eat it again (sounds gross, and it really is, especially for preggo mommy who cannot even look at deli meat right now never mind masticated deli meat that is being re-eaten). But again she would always spit it out. The specialist explained that many kids would try to swallow it, and end up choking, gagging, and even vomiting. Clare, however, does not do these things, simply because she understands that she cannot swallow certain foods. Clare only has 1.5 molars (the second one is cutting through right now), so her chewing skills are not developed. I was very glad Jessica, Clare's OT, was involved as well because the swallow specialist gave her some exercises to incorporate into Clare's OT sessions. Things such as showing Clare how to chew on foods such as jicana and dried mango strips. I am interested to see how this all turns out! Since Clare is already demonstrating protective measures in swallowing, the specialist stated that there was really nothing to do right now swallow-wise. The plan is to work on her diet and chewing skills (which will hopefully help her swallowing) and follow-up with the feeding team in six months. And, this time, I am keeping our follow-up appointment. You never know what tricks Clare may pull in the meantime!

My Toilet Scrubbers

Brady's mom, Kerry (see sidebar) posted about friends a couple months ago and a catch phrase her brother-in-law asked her when discussing a friend was, "Is she the type of friend who would come over and scrub your toilet for you?" Which got her thinking, which got me thinking. Do I have those friends who will scrub my toilet? And not because I am tired, hormonal, and seven months pregnant either! But those true friends who are there for you through thick and thin, the good times and bad times. Who love you even when you always have a bad hair day, are cranky and rundown, or whine too much (especially on her blog!). I talked about feeling alone sometimes in my group of friends, and I admit I do sometimes. It's natural. I am sure there are times when everyone feels like the outsider at some point or another. But all of those particular friends have reached out to me, especially after I admitted my feelings, and have asked what can they do to help. You guys have already done so much for me. You were all there making meals for me after Clare was born. You were all there taking Jamie and making more meals when Clare was in the hospital. You are all there whenever I need to talk. You are all there to marvel at Clare's triumphs, share in our joy, and stand by me during the down times. You never judge me, but accept and support me. And, I believe, you would all scrub my toilet for me (or at least send your cleaning lady over... ha ha ha!).

So you know who you are... thank you for being my toilet scrubbers! (And, just so you know, I would scrub your toilet, too. Just don't ask me until this pregnancy is over.)

This Explains A Lot

Bad moods, crying spells, catatonic phases (just kidding)....

Maybe it's from lugging this around! And I still have 11+ weeks to go!

I forgot to add moments of sheer joy, feeling those internal baby gymnastics, unexpected hugs and kisses on my belly from Jamie, washing, folding, and organizing those teeny tiny baby clothes. It truly is all worth it, even through the bad days. Even though I feel like an elephant. Even though heartburn, back aches, and leg cramps are my daily companions. Even though it is a feat to bend over to tie my own shoes, never mind tie Jamie's shoes, tie Clare's shoes, button winter jackets, heft the diaper bag, load preschooler and toddler into the car day after day after day. Shawn has taken over giving baths, scooping litter boxes, hefting laundry up and down stairs. It's all worth it.

Heavy Heart

I had a breakdown last night. The funny thing is it was not a bad day. The kids and I hung out in the morning, did a little grocery shopping, went to the car wash (which has turned out to be Clare's new fear unfortunately), then had our quiet time. After quiet time, we were off to a Valentine's party. Jamie, as usual, had a grand time - what's not to love about passing out Valentines and candy, decorating and eating cupcakes, and playing all kinds of games. Clare, on the other hand, alternately sat on the floor in the living room with the six-month old baby that was there or clung to my hip fussing and watching the other children. When we got home, I just started crying (poor Shawn - for no apparent reason, as far as he could see, until I explained).

There are times when it absolutely gets to me. The whole developmental delays, Williams syndrome, heart defects, having a child who is not the same. The same can be boring, I know it is. (Trust me, being a stay-at-home mom, I definitely have those moments when we need to jive up our days and routine.) But the same can also be comforting - people understand what you're going through, you're in familiar territory, there are usually no nasty surprises. I love my group of friends and would never leave our group because of these feelings, but at the same time, I feel so alone sometimes with them. Clare wants to be involved with what everyone else is doing. She understands that she is being excluded, that she is not participating. Not on purpose, but because that's just the way it is. She knows in her almost 2-year old brain that she's not making the craft, playing the game, running around and laughing like the other kids. But I don't know how to help her. And that hurts me. I don't want her to have to play on the floor with the baby while the other kids are partying it up. At the same time, it's so hard toting her around (especially being seven months pregnant) - when we came home from the party, my right leg was killing me from constantly doing things while holding Clare so she could be somewhat involved (or at least a spectator). It's selfish, selfish, selfish of me, and I feel like a horrible mother to have these feelings. I want the best for Clare, and I want her to succeed and have her accomplishments, but I also wish it was a whole lot easier. I don't want her to have to struggle to do everything. To be challenged at every step. Why can't just one thing come easy? I watch Jamie do things now and think of how he was when he was Clare's age, and it seems so easy for him. I want Clare to just have one little piece of that ease. From Day One, I feel as if it's been one thing after another with her.

I am so grateful for my WS-mommy community out there who do understand these feelings. I just wish you guys lived closer! I wish our beautiful, "different" children got a chance to play together. I hope someday Clare gets to meet other children who are like her, and she doesn't always have to be the one who is different.

Sometimes I feel as if it is MY heart that is broken.

Blizzard Bliss

Jamie got his wish for SNOW!

We had a pretty decent snowstorm yesterday. In New England, it's an old joke that with any impending snow, people flock to the grocery store for bread and milk. You never know what can happen with six inches on the ground (or even one or two). So Jamie and Shawn braved the snow to head down to the convenience store a couple streets over. Jamie had a blast because Shawn pulled him on the sled the entire way. However, in this household, the staple that sends us out in the middle of a snowstorm is for more beer. Shawn realized he was completely out of beer (perish the thought!), so he thought it would be a grand excursion to go get some with Jamie. As crazy as that sounds, Jamie loved it!

Jamie's 30 minutes of being outside wiped him out, so we spent the remainder of the day cozied up inside with the fireplace going and watching the snow fall. As well as entertaining two restless children. Jamie has been into putting on shows for us lately (he comes by it honestly since Shawn has a BA in theatre). Jamie's audience sits on the couch and watches whatever show is being performed that day. Sometimes it's a scooter show, sometimes it's a ninja show, yesterday it was Mr. Funny Heart singing Clare's favorite song, "Itsy Bitsy Spider." We recorded it with our camera, but I have not figured out how to post that on the blog. Clare enjoyed the show. Each time Jamie... I'm sorry, Mr. Funny Heart finished the song, she would clap and say, "More? More?" She was a very enthusiastic audience! I love seeing the two of them interact and play together. Clare loves the attention she receives from Jamie, and he loves having an adoring little sister. Jamie is more than happy to perform for Clare!

Keeping Up

Some days (or weeks), I feel like I am putting in the bare minimum to keep up with the craziness. It has definitely been one of those weeks. We've been trying to paint our living room and knew we would have to do it in spurts with two little ones and a pregnant mommy. It is coming along nicely, but we didn't count on the fact that all four of us would be struck down in sickness over the past week. Shawn and Jamie were plagued with head colds, coughs, and congestion, while Clare and I came down with the stomach bug that is going around. Funny enough (and a definite blessing!), the boys didn't catch what the girls had and vice versa. It was enough to knock us off our feet for a few days. I have to be grateful, though, because we have really managed to get by this winter fairly germ-free. (Of course, I will be jinxing us now!)

Clare's eating is still going strong. What a huge improvement. I cannot put the feeling into words how relieved we are to have that past us (to some degree, since we still have weight checks and the swallow study in the future). However, she is continuing to have bowel issues, even with being on the Miralax, so we are currently trying to figure this out. She is back to screaming in pain when passing something and even passed blood last night. It may be her body trying to adjust to the sudden inflow of food again, so we have been doing a lot of dose tinkering. It's always going to be something, I fear. My hopes of Clare walking by her second birthday are pretty much nil now. I am keeping my fingers crossed for June, at this point. I can't say she isn't making progress, but the progress is going at a snail's pace. We recently bought her her first pair of shoes, by suggestion of her PT. A sturdy cruiser made by Stride Rite with high tops to support her ankles, going on the theory that if Clare had more support around her ankles, she would feel more confident about taking some steps. She will walk a little holding onto our hands, but will not cruise along furniture or even let go of one hand. Clare loves her new shoes and has learned the phrase "new shoes" while pointing to them. Her vocabulary continues to expand and her receptive language is amazing, so I am thankful that she continues to develop in that area. She loves to be involved in whatever we do, including testing out the new baby swing for us. As you can see, she loved that, too!

It has been a disappointing winter snow-wise in NH. Poor Jamie. In the fall, he eagerly looked forward to winter - building snowmen, snow forts, sledding, having snowball fights. In the past, we have a good continuous 3-4 feet of snow on the ground by now. This year, we have maybe three pitiful inches on our yard. Jamie (and Shawn) were so determined to build at least one snowman, though. See if you can find it in the photo!

Girlfriends

Clare has girlfriends. It is so cute. One of my biggest fears for Clare is that she will have a tough time making friends. And she may in the future, who knows. But I love the innocence and acceptance of small children. They do not know there is anything different about Clare. They do not notice that Clare cannot walk or talks just a little bit. They just love her for who she is.

I have two close friends whose daughters are just a couple months younger than Clare. Sometimes it is hard for me to see these girls because it reminds me of how Clare "should" be. Walking, talking, eating, doing all those typical almost-two year old things. It's hard to see children younger than Clare far surpassing her in development. But then I am also so profoundly grateful for the friendships of these moms and the kids. I know both Clare and I benefit greatly from knowing these wonderful ladies and their daughters. One of them is in my regular playgroup, so we see Emily and her mommy often. The other day, Clare and Emily were bouncing on a small trampoline together (it really was small and Clare was being a good girl and holding on tightly to the bar). Emily was doing all the actual jumping, being much (much, much) more agile on her feet than Clare. Clare was along for the ride and loving every minute of it. At one point, she turned to Emily with a huge grin on her face and just started babbling. And Emily babbled back. The mommies all went "awwwww."

At church yesterday, we were already settled in our pew when Clare's other girlfriend and her family came in. They sat a few pews behind us. Clare immediately spotted Cara and became so excited. She stood gripping the back of our pew and greeted Cara quite loudly, much to the amusement of everyone around us. I was amazed that Clare actually recognized Cara from a few pews up, not to mention that she clearly was happy to see her. Cara is so sweet and always wants to hug Clare whenever she sees her. All parents want their children to be loved and have friends, but I know I want it the mostest (as Jamie would say) and it's warm and snuggly to see Clare be loved.

Some Relief

Clare's eating strike seems to be officially over! Can I just say I love our pediatrician?? She started on the Prevacid last Thursday night, and on Friday, she ate a whole piece of pizza for my mother-in-law. Then she ate a little dinner for us that night. It's been slowly uphill ever since. She enjoys mealtime again, eats some snacks, and just seems to be a happier kid. Shawn and I are a bit peeved because we brought up reflux to the first pedi more than a month ago and it was completely dismissed by her, and it turns out that is what Clare has. It would have saved weeks of worry and stress over Clare (not to mention she would have been eating for that time), but it's water under the bridge now. The important thing is that Clare is eating!

Clare had her RSV shots this morning, and she is up to 18 lbs, 8 oz. I think my jaw literally dropped at the scale. I kept looking at the number to be sure it did not say 17 lbs, 8 oz, but no, it was 18. Last week, at her appointment, Clare weighed 17 lbs, 11 oz, so she gained 3/4 of a pound in a week! We are thrilled beyond words, to say the least. If Clare keeps this up, she may actually weigh 20 lbs by her second birthday in a couple months! We are still going through with the nutrition consult and swallow study, which is scheduled for three weeks from now.

We received our phone call this morning from the pre-school we are looking at and Jamie was accepted. So he will be starting school in September. We are all excited!! So far, it has been a really good day!

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!

Pampered

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.

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.

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.

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!

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."

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.

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 Year...it 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!

The Strike Continues

Clare's eating strike continues. Yesterday, she ate nothing all day. At dinner, we decided to do a pizza party and watch a movie (something Jamie loves to do and usually Clare enjoys it, too). As we all watched "Over the Hedge," Clare just sat there with her tray full of various food items. Occasionally, she would take a sip of milk. By the end of the movie, we noticed that Clare had eaten two pieces of pizza, and we were ecstatic. I was hopeful today would bring better things.

Not the case. Clare refused to eat anything all day except two pieces of Pirate Booty (small rice-puffed thingys). She turned her nose up at breakfast, played with her food at lunch, and cried throughout dinner. We even took her out of the highchair and put her in a booster seat at the table, so she could eat like a big girl. We let her have her bowl and fork like Jamie and didn't even put a bib on her. She didn't seem to care. She barely even drank her milk today.

I am getting increasingly frustrated and concerned. It is definitely stressing me out because every little thing sets me off and I cry easily. (I know, I know, could be just pregnancy hormones!) Maybe Clare is just experiencing a "typical toddler" eating strike. We never went through this with Jamie, though, and Clare cannot afford to stop eating. We have a follow-up with the pediatrician on Tuesday. I honestly do not know what I am going to do if Clare has lost more weight. After our battle with the GI's office the other day, I am not 100% keen on working with him on this. Our only advice from the pedi to cut down on her milk has not made a difference. In fact, some days, Clare does not even finish her allotted 16 ounces of milk (when before the strike she was drinking up to 32 ounces per day). Please let some molar break through so we know what's going on and that this will end!!

THOSE Parents

Yesterday Shawn and I were the parents from hell. To the doctors, at least! We were THOSE parents - pushy, nagging, persistent, wouldn't take "no" for an answer.

After we got home from Clare's appointment yesterday, Shawn and I just weren't satisfied with the non-answers we received. Clare's eating strike started about a week after we switched her to the high-calorie, high-calcium fortified milk and a daily multivitamin. All of a sudden, she is getting 40-60% more calcium a day plus Vitamin D, which we have always limited due to the fact that many children with WS are prone to hypercalcemia (a build-up of calcium in the system - for some reason, children with WS have difficulty processing calcium and Vitamin D aids in calcium absorption). Clare's calcium levels have always been on the border between the high end of normal and low end of abnormal. Yet every time her levels are tested, the numbers are a tad bit higher. Could this sudden explosion in calcium have pushed her over that "normal" edge? Hypercalcemia can lead to very serious consequences. One of my WS-mommy friends, Amy, spent three weeks in the hospital last year with her daughter (who is only a month older than Clare) due to hypercalcemia. Avery presented with symptoms similar to the flu or a cold, and it was not until she went into kidney failure that the doctors finally figured out Avery had severe hypercalcemia, not just a cold. When Amy read my post and called me about Clare, Shawn and I knew we needed to pursue this further. I looked up hypercalcemia online and Clare's symptoms fit - poor appetite, excessive thirst, frequent urination, lethargy, weakness, irritability, abdominal pain.

Checking for hypercalcemia and kidney failure is as simple as a blood test. In fact, Clare's GI was ordering a multitude of tests for Clare in a few weeks. We were just waiting for her appointment with the endocrinologist and for his tests, so Clare would only have to undergo one needle stick. Now, however, two needle sticks were the least of our concerns. We just wanted to have Clare tested ASAP. That proved not to be as easy it sounds, though. Shawn initially called Clare's GI in the morning to see about moving up the tests to that day. He asked that she specifically be tested for her calcium, creatinine, and iron levels as well as kidney function. After relaying this to the receptionist, you wait for the call-back from the nurse, who then goes over the exact same information. Then you wait for another call-back from the nurse after she relays the info to the doctor. Hours after Shawn talked to the nurse for the first time, we were still waiting for the call saying the blood work was ordered, and we could take Clare to the lab. It was now close to 4pm, and we were originally told the doctor was leaving at 4pm, so Shawn called the office. After much discussion with the nurse (who was becoming less and less pleasant with each phone call), she finally said that the GI would order the blood work, but he would not be back into the office until Tuesday to read the results. The nurse did not display an ounce of concern that, in the meantime, if Clare did indeed have severe hypercalcemia that she could go into renal failure by the time the doctor got back into the office. Shawn asked if another doctor could read the tests for us. The nurse said she would check with the GI and go ahead and order the blood work. Shawn then called Clare's endocrinologist to see if he could read the results of the blood work - he said either he or the other endo could definitely read the results. (And God bless the receptionist at the endo's office - she was the first person who expressed even some concern over the words "possible kidney failure.") So Shawn and Clare headed over to the lab to get her blood drawn.

While they were gone, the nurse from the GI's office called back and said that the GI would not order the blood work if another doctor was going to read the results. I told her that Clare's endo already agreed to read the results. She said that was not going to work and the blood work would not be ordered. When I told her that Shawn and Clare were already at the clinic to get her blood drawn, the nurse became extremely snippy and started laying into me how she never said the blood work was even ordered so why we would go to the clinic. At this point, I was just so fed up with her attitude that I hung up on her. I then called Clare's endo back to see if he could order the blood work. He was very polite and kind, but said without examining Clare, he could not order the blood work, especially since it was Clare's GI who initially was going to order the blood work and the pediatrician who last saw Clare. Since it had been three months since Clare had last seen her endo, I tried very hard to be understanding about his dilemma. He suggested we talk to Clare's pediatrician. Easier said than done, since Clare's pediatrician was out with a broken foot.

I was able to get in touch with Shawn at the clinic (where he had already learned that no blood work had been ordered). Thank goodness Shawn is a man who knows when to not take "no" for an answer! He went right over to the GI's office (which is next to the pediatrician's) and had all three secretaries working to get the blood work ordered from some doctor or another. Finally, the pediatrician who saw Clare a couple days ago said she would order the tests along with a urine culture. Shawn was able to get the lab to put a STAT on the tests, and we would have the results from Clare's blood work in 2 hours and the urine culture in 48 hours (takes a little longer to grow the culture). Poor Clare had to endure both the blood draw and a catheter to collect her urine. And poor Shawn had to be there with her.

We did get the results of Clare's blood work last night from the pediatrician (who turned out to be very nice and understanding on the phone about our pushiness - we should have just requested all these tests when we were in her office two days ago). Everything came back negative and all her levels were normal. To be on the safe side, the endocrinologist is going to review the results as well (since hypercalcemia would be in his ballpark). We're still waiting for the results from the urine culture, but I expect it to be negative as well. I am so relieved that it is not hypercalcemia or kidney failure. The worst case scenario is not a possibility anymore. We still have no explanation for Clare's eating strike and prolonged sleeping (which continues on Day 11), but at least we know what's NOT causing it.

To wrap this long post up, I have to admit I was very disappointed with the response we received from the GI's office. I can understand the endocrinologist because we dragged him into this, and he had no idea what was going on. I can (kind of) understand the pediatrician because she is not familiar with Clare or her history, plus she is taking care of her own patients while covering for Clare's pediatrician, so I am sure she was super busy during this holiday week. It is Clare's GI, and especially his nurse, that I was upset with. Not knowing how much communication actually went on between the GI and nurse, I cannot say how involved the GI was or not. Who knows when he got the initial message about pushing up the blood work. Who knows if our concerns were relayed to him. But I cannot believe how the nurse treated us. (And, yes, I DO remember your name, lady.) Like we were paranoid, obnoxious parents worried over nothing. Given Clare's long, complicated medical history, her ongoing treatments, her multiple systems involved, this is the first time we have EVER asked for something of the doctor's. And to have to spend the day jumping through hoops (and crying, on my part!) to get simple blood work ordered is ridiculous. I just thank God that we were wrong, and Clare does not have hypercalcemia. But it does make me question how reliable some of her doctors may be (and I leave her cardiologist out of this completely because she has always been someone we could trust and rely on) in a serious circumstance and when push comes to shove.

Eating Strike

Today marks Day 11 of Clare being on an eating strike. When it first started at the beginning of last week, Shawn and I were not too concerned. She had cut her first molar a couple weeks ago, and we thought maybe a second molar was cutting through, which would obviously be painful. However, as the days went past, Clare's eating (or lack thereof) worsened. She refused to even eat her favorites - glazed donuts and M&M's. We tried everything we could think of to get her to eat. She became fussier and fussier. When no molar came through and Tylenol did not improve her mood or appetite, we decided to wait a couple more days before calling the doctor since it was Christmas. Over the past three days, Clare's energy level decreased drastically and she started sleeping most of the day. After a multitude of phone calls, we finally saw a doctor yesterday.

Clare's GI wanted us to see her pediatrician first to rule out colds or infections as a cause for the not eating. Clare's pediatrician broke his foot and is out of the office, so we saw one of the other pediatricians in the practice. I have met this pediatrician before and like her (she actually was the one in the hospital to first detect Clare's heart murmur), but she is not familiar with Clare now, her history, or Williams syndrome. When she checked Clare out, she said everything looked and sounded normal. No ear infection, signs of strep throat, anything she could see to explain the eating strike. To us, the most alarming thing was that Clare has lost 5 ounces and is down to 16 lbs, 15 oz. It may not sound like a lot, but that was Clare's weight back in July. So to Clare, she has lost six months of weight gain that we have struggled so hard to put on her. The pediatrician was fairly unhelpful with a solution. The only thing she came up with was to decrease Clare's milk consumption going on the theory that Clare was getting full on milk and, therefore, did not want to eat anything else. Shawn and I are not convinced this is the answer since over the last couple days, Clare has not even wanted her milk. But we have no explanations for the eating strike, so are willing to try this. We are going to follow-up with the doctor next Tuesday to check Clare's weight. If she is still losing weight and/or shows no improvement in her appetite, then I am skipping the pediatrician and insisting on an appointment with the GI. Clare is scheduled to have her slew of blood work done in a few weeks with him, but I am sure we can get those pushed up if need be.

We did get Clare to eat two slices of banana this morning before she called it quits. I am very worried about the not eating and losing weight. Clare does not have much weight to lose and we're facing the coldest months of the year here in New England. I feel so powerless because we cannot force Clare to eat, but she needs to eat. I hope next week brings better news.