Valentine's Day Theatre

I think I finally may have figured all this blogger, You Tube, video stuff out. So here goes our first try!

Welcome to our Valentine's Day Theatre and James Michael's production of "Itsy Bitsy Spider."

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!