Wednesday, January 30, 2008

The results are in...


Just got a call from Dr. Smith, the geneticist, and Luc's test results came back positive for William's Syndrome. It's not the news we were hoping for, even though we were expecting it, but at least we know for sure.


On the other hand, we can get more help for Luc and give him a better chance at a "normal" life. He is really pulling up to stand or high kneel on furniture and toys and he takes little steps when you hold his hands, so we are making progress.


We are going to start him on Calcilo formula so he can drink something other than juice with higher calories, and trade off to have him able to eat yogurt, cheese and other dairy products, while not compromising his calcium levels.


He is actually able to play with his sisters more now and hold his own, except when Kateri uses him as her "horse" and rides on her back. Kateri is becoming a little brute. She likes to take toys away from the other two and hit people in the heads with cups. We have tried "time-outs" with her, but she will just walk away after a while. We just keep saying no and taking her toys away and hope that she gets the picture!


Sydney is just as bad because she will do things to irritate her sister and then cry when she gets payback from Kat. Nashoba has been the object of their affection as of late. He is getting pissed off at them because they blitz attack when he is eating. He's nipped a few times, and they still don't get the picture. Hopefully this stage too will pass!

Tuesday, January 29, 2008

Nutritionist Visit...

We saw the Nutritionist today at Children's and she said she loved the diet we have the kids on, especially the fact that we have them eating the same meal that we do! That was good to hear. We have to actually ADD calories to Luc's diet and change him to drink this special formula that has no calcium but the vitamins he needs. This way, he can have yogurt and cheese and pudding as a snack and not worry that his levels will go up.

We had the ultrasound on his kidneys and they didn't see any stones, so we are good there. All in all it was a good day. Cioci Bonnie said the girls were very good for her. I can't believe how big Hadleigh got since we last her and how great she sits up on her own! What a big girl she is becoming! She should be running around with her "siblings" this Summer for sure!

I told Bonnie that Easter should be fun this year with all the kids running around. Good thing we have a big yard for the egg hunt. Hope Uncle Scott and Daddy are ready to think on new spots to hide eggs this year (preferably spots not in Poisin Ivy).

Monday, January 28, 2008

Another day...

We had a great visit on Saturday with Auntie Paula, Uncle Joe, Anutie B and Uncle Boo! The babies had lots of fun eating Thai food and showing off for everyone. Of course Sunday was spent recovering from all the excitement!

Today we have a home inspection for our refinance of our mortgage. We are going down a whole point! That will free up more $$ for diapers!

Tomorrow, Luc and Mommy head to Boston to Children's Hospital to talk to a Nutritionist about his diet and watching his calcium intake due to the William's Syndrome. Then we have to go for an ultrasound on his kidneys to make sure he doesn't have any kidney stones from the extra calcium in his system. That should be a fun day...NOT!

We will keep everyone posted on his progress.

Kateri is running around like the little fiend that she is. Sydney of course, is right behind her, or running in front of her with Grinchy. Grinchy is Kateri's favorite friend. She has managed to eat all the fur on his neck off so he looks like a plucked chicken. I'll have to find a picture of him to show everyone.

We can't wait until Spring so we can go outside and run around. Hopefully Luc will be walking around by then, but he is doing so well crawling and pulling himself up on furniture that he may be walking sooner. Cross your fingers!
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Friday, January 25, 2008

Hurray Luc!!!!!


Last night we had a huge surprise when Lucien comando-crawled over to John sitting on the couch and pulled himself up to stand. This was HUGE! He has been crawling up to his toy baskets and pulling into a high kneel this week, but now he is reaching over his head to pull himself up.


We can't wait to see what he is going to do now!

Thursday, January 24, 2008

15 minutes all to myself

I guess that's what you get for bragging. They woke up 15 minutes after my last posting! Is nothing sacred anymore. After watching Yo, Gabba Gabba AGAIN, we have now moved onto making dinner. Well, almost moved on. Since waking, I have have changed each child's diaper 3-4 times. We have been afflicted with diarrhea. I don't know if it was the Pomegranite Blueberry juice or what, but the corn from last night's dinner has made a comeback!

Hopefully they will all sleep through the night. My daily sleeping pill is not drowing out Lucien's screams and I feel bad for my poor husband who has to work the next day! As it is he is at BJ's picking up another box of wipes and diapers, as well as our bi-weekly supply of apples and bannanas. Thank goodness we grow a garden in the Summer because our food bills are huge as it is. No one can believe how much these guys eat! At the rate we are going, we will be clear cutting the forest in the backyard to set up grazing land for the herd of cows we will need to keep them in meat!

The sound of silence (otherwise known as naptime)

Well it's 2:14pm and I am finally going to have lunch. A feat that I have yet to master when they are awake and I am alone. I usually get to eat half of my food and the little spawns eat the other half. I guess that's a good enough diet? I should have about another hour (ha,ha) to myself before they wake up. Just enough time to clear a path through the destruction to the recliner to catch up on "Cashmere Mafia". I know if I try to take a nap, one or more will awake. They seem to have this strange inate knowledge of when I close my eyes and then the "Momma" call starts. Take it while I can get it...

Lunch is over...


Well, we made it through lunch with no major problems. The girls are sitting in their rocking chairs eating their bread and Luc is playing with the cat's jingle ball in front of the tv. We just got done watching "Yo, Gabba, Gabba". I actually LOVE this show. The trips get really into and love the music. They have really catchy songs that when we sing them they will stop crying and start dancing. Kateri rolls her shoulders to "Dance all the Wiggles out" like she's dancing at a Rave or something. Luc will crawl up to a basket and high kneel at it and bouce to the music, so I know how to get him moving! God, I love TiVo (or the Comcast equivilent). I record them and replay them all the time! It get's me up dancing with them for a 1/2 hour, take that "Curves". Who needs a gym, right?
I have been emailing other Mom's in the area with kids who have William's Syndrome. There are quite a few of us around, which is wierd to say, a great thing. Luc actually seems to be doing ok for a kid who has this syndrome as he never had problems with eating differnt foods or any heart issues.
We have had 2 surgeries at 4 months and 6 months to fix a double inguinal hernia and recurring hernia on the left side. We have to go in February to fix yet another one on the right side this time. Oh yeah! Another day at the hospital. It wouldn't be that bad but we have the two girls to find someone to watch them and if we bring them with us, they are bored and cranky. I know the feeling all too well.
We have a meeting with the Nutritionist next week and then an ultrasound on his kidneys to see if he has kidney stones from the high calcium level. Then we go to the Cardiologist in March for and Echo on his heart and a meeting, then in for a follow-up eye exam for the stabismus and glasses, then in for a follow-up with the Geneticist and Endocronologist in May. It could be worse! I needed to write down the list of all the doctors we are working with to keep them all straight. He actually has more doctors than I do now! No wonder I'm on anxienty meds!
Just noticed the phone is in use upstairs..."Do you know where the children are?"
Kateri knows how to turn the phone on and "talk" like Mommy. She is also very good with the mouse and disconnecting the internet. Luc is mastering cable connections while Sydney handles mass demolition. I have my own little hackers in training.
Currently, they are in the processing of hiding as many MegaBlocks as they can under the couch and entertainment center. I don't know how they learned to use the zipper because I sure was not going to teach them! At least I can get them to clean up their mess...
Sorry, that was a dream I had last night. They will actually start to clean up and then proceed to dump the entire contents out again. I guess it's evolutionary progress, n'est pas????
More later...

Kateri dans la table

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Worse than I thought...

Just checked the living room and they emptied out the contents of all 5 baskets of toys. Houdini, a.k.a. Kateri, keeps bringing me wet dish towels. I am afraid to look. She is tormenting our cat Nefret and practicing for Iron Man Competitions all at once. We think she is going to be a Stunt Woman or Co-Vert Ops agent when she gets older because she is really good at deception to get what she wants and has no fear of climbing up things 3 times her size.

Lucien is trapped amid a sea of toys and is valiently "hump-crawling" out of the disaster zone. He is currently without glasses because for some unfanthomable reason they are like magnets for greedy little fingers. The girls take turns ripping them off his head, in turn bending them in ways they should not be bent, and running around the house tossing them under furniture.

Sydney is quiet. Too quiet, if you know what I mean. False alarm, Elmo is on. Now they want to write on the blog. Kateri is sitting on my lap with a very stinky diaper, while Sydney is at my feet saying "Up". Crying...Bastet, other cat, scratched Sydney because she got too close. Thank God its almost naptime.

Kateri is climbing up on the dining room table and yelling "Mama...Mama...Mama". If she can get up, shouldn;t she be able to get down?????? More later...

A brand new day


Well, today started out like any other day...Lucien awoke at dawn crying. By that, I mean 4AM. John, my husband, went into the other room so Luc could take his place and we wouldn't awake the Sleeping Beauties in the other room. The girls woke up around 7am and so did Luc with a round of sobs.


We made our way down to breakfast, oatmeal and blueberry applesauce followed by a refreshing glass of chocolate soy milk! Then on to "A Big, Big World" and "Sesame Street". Off to bed my 9am and Mom goes on to clean up the aftermath of Triplet Tornado.


Our son Lucien was just recently diagnosed with William's Syndrome. A rare genetic mutation. We are still strying to process this fact but looking forward to a bright future for all of our children. Hey, God only gives you what you can handle, right?????