Archive for April, 2008

I will ONLY do it for a Banana Puff!

Tuesday, April 22nd, 2008

So Happy (belated) First Birthday to miss Lily from Maggie and her mommy and daddy! I can’t believe that its been a year since you were born, and we went to the hospital to see you. I was in my final weeks of pregnancy, and had never held a baby before, and was scared to death I would drop you. But you just laid there in my arms and hung out, and I felt so much better about how I would do as a mom. You were so beautiful, and cute and tiny and sweet. I’m so glad that Maggie will grow up having such a sweet friend as you! So, happy birthday Lily, the oldest of our mini-baby boom of 2007!

On Maggie news, she has decided she doesn’t want to eat. She just rocks back and forth in her high chair and shakes her head “no” when I try to give her baby food. She’ll eat her banana puffs and Cheerios, but not her baby food. The only way I can get food in her mouth is to trick her into thinking I’m about to put a banana puff in there. Then she figures it out and we’re stuck again. We thought maybe she just wanted to feed herself, so we got her some little solid vegetables she could pick up (tiny green beans, peas, carrots) and some mashed potatoes, and she was into it for about 20 minutes, but barely ate anything. I wonder if its teething…I thinks she might be cutting some molars. It just came on all of a sudden over the past week and a half to two weeks. She’s never had feeding problems before. We’ll keep trying and hope it passes quick.

And, this Saturday, we are inviting anyone who wants to come over to come help us finish getting the condo ready to put on the market. We will have food and beverages (pizza, beer and coke, probably) for anyone who helps. We have painting and other random items on the to-do list (like put the door knobs back on), so any help would be appreciated!

What I wouldn’t do for a Banana Puff!

Friday, April 18th, 2008

Maggie made it around the corner of the coffee table a few times today! You have to put a Cheerio/Gerber Banana Puff just out of her reach on the perpendicular side of the table. She’ll only go around the corner when its on her right, though. She’s like a little backwards race car driver (her aunt Amanda would be so proud!)

Maggie also kind of said her name today. She said something that sounded like “Manny” several times while I was repeating our names (Maggie and Mama) and pointing at our foreheads. I try to do that to teach her everyone’s names. I put my finger on someone’s forehead (mine, Maggie’s, Daddy’s, Granny’s, etc.) and then say their name. She usually finds it highly annoying, because she’s rather be trying to climb a pillow or chase the cat, but she found it amusing today. Our little daughter Manny…so proud :)

So I finally got around to getting the photos off the camera. Here are some cute shots of Maggie and the family, some shots of the house we want to make an offer on, and some shots of the house in a rough neighborhood that we absolutely love, but would be scared to stay in after dark (it was crossed off the list when we turned on to the block!)

Enjoy!

Pics of Maggie and the Family


the Brunsons


angry Maggie


Maggie and Princess Clippity Clop (a present from uncle Joe Mac)


whaa?


like father, like daughter :)


Granny has been teaching me funny faces


woohoo! I can pull up on the coffee table and steal the remote!


mom, only babies are scared of corners!


one of Maggie’s last baths in Stewart (her inflatable duck bathtub)


sweetness


yummy toes


beautiful Maggie


Tyler and Perrin at the Masters…cute pic,
but when did I get a man jaw?

House we want


front of house


front of house


side yard, back deck


Carleston style porch door, traditionally would be closed if the family was not accepting visitors


entry area


living room


dining room and hall from living room


dining room


kitchen


stairway


bedroom 1 (Maggie’s room?)


bathroom


bedroom 2 (guest bedroom/office?)


master bedroom door to porch


master bathroom


Maggie and Tyler on master bedroom porch


back deck


back yard


back yard

Other House


front of house


front porch


living room?


landing


stairway


one of the 4-6 bedrooms

Are those outgoing potato chips?

Friday, April 18th, 2008

Last night, Tyler was sitting on the bed talking to me while I was working. My desk is a huge mess, and I was trying to clear it off a bit by putting things wherever I could find to put them. I put a bag of potato chips on top of one of my desktop paper organizing trays (like an inbox or outbox) and Tyler asks “are those outgoing potato chips?” I have been giggling about that all day :)

The Braves finally played a good game last night, with three consecutive homeruns! Tyler and Maggie were both very excited! Maggie was wearing her Braves onesie, and had a great time watching the game with her daddy and her uncle Brad.

Great news on the house front…they’ve reduced the price again! That makes me think that they’ll jump at our offer. I hope the loan guy gets everything together soon…I’m getting anxious!

Maggie has been crossing her fingers all the time the past week. I don’t quite understand it, but she does it all of the time. It looks so cute! She just sits there like “please please please!”

She’s also working on cruising around the corners of furniture. We put a baby Cheerio (her favorite!) on one side just out of her reach. She tried, but hasn’t quite gotten it. She’s also stood up a few times by herself, without holding onto anything, for a few seconds. I can’t believe how big she’s getting!

I’ve been trying to pay attention to Maggie’s movements the past few days, and was amazed with what I noticed. She can pick things up, even tiny things, without overreaching too much, but often she’ll just look at an object and flail her arms at it. Her daddy’s nose was the victim of such an event recently. Its just weird how some of her movements can be so deliberate, and some are just so out of control. I’m very thankful that her development isn’t as delayed as it could be, but I wish I could figure out why she’s on top of it sometimes and not others.

Side note, at the beginning of January, before we had any idea about WS, I told Tyler and my parents that I was worried that she wasn’t developing quite as fast as the other babies we know. I thought it was because I don’t spend enough time playing with her during the day because I work too much. They all were pretty aggressive in telling me that I was worrying too much over nothing, so I let it go. This was prompted by another baby we know, who is a little less than a month older than Maggie, picking up little balls and putting them in a hole, that would send them down a slide to be picked up again. Now, with all I know about WS, I know I was picking up on her troubles with fine motor skills and reasoning. I guess I should have paid more attention. Maggie still can’t put an object in something, unless that something is her mouth.

So, I guess I’m actually seeing the delays now. They’re still mild delays, and I’m so thankful for that, but it is freaking me out a bit. I’m thinking I’ve been avoiding dealing with this to a certain extent because it doesn’t really feel like I have to deal with it yet. Maybe I have dealt with it and don’t realize it because it wasn’t as bad as I thought. Who knows.

I’m going to go play with my baby :)

Evaluation Day

Wednesday, April 16th, 2008

So I spoke with Dr. Mervis this morning, and Tyler and I are planning to take Maggie to Kentucky on May 12th. I’m pretty excited about it. I still can’t believe we were able to get an appointment with her so quickly! I’ll write more about the tests and things they’ll be doing when I have a chance later.

We went to look at houses last night, and we’ve decided to make an offer on the blue Charleston style in the Northeast. It would be perfect for our family, though it does lack the character I was hoping for. I really do think it is the best option we’ve seen as far as our most important needs (space, location, yard, condition). I was worried Tyler wouldn’t like it, but he did! As soon as we hear back from our mortgage guy about when we can do our prequalifying letter, we plan to make an offer. Yay! Pictures will be posted later.

Maggie has her assessment with BabyNet today at 2 to determine if/how often she needs speech, occupational, and physical therapy. I’m nervous about it, for some reason, but I’m crossing my fingers that it goes well!

*UPDATE*
They didn’t evaluate Maggie today because she is already eligible for the program based on the WS diagnosis. We just filled out paperwork, Maggie charmed her case worker, and I heard about all of our options and what we do next, etc. The weirdest part was that I had to tell the case worker about WS. I was so proud of myself, giving her all of the information about Maggie’s diagnosis, what WS is, and what we know are common WS difficulties. Once we choose which provider we would like to go with, someone from that organization will come out and do her basic evaluation, then they’ll assign her physical, occupational, and speech therapists, and they will do the in depth evaluations.

TCB

Tuesday, April 15th, 2008

I emailed Dr. Mervis at the University of Louisville in Kentucky (who is supposed to be a leading expert on the behavioral / developmental / speech side of Williams Syndrome) yesterday, told her a little about Maggie, ans asked if she would be willing to see her. I have been told that Dr. Mervis does a free two-day evaluation of your child, and can let you know about where they are on the spectrum, and you only have to pay for hotel and transportation. They conduct extensive research on children with Williams Syndrome and Down Syndrome to try to better understand these disorders.

So, I get on my computer this morning, and I have an email from Dr. Mervis! I was so excited! I wasn’t expecting to hear back from her so soon. She is supposed to call me back later today to go over the research that they’re doing, and discuss further details about seeing Maggie.

So, YAY!

Also, we’re going to look at houses tonight. I will try to post some pictures.

*UPDATE*
Dr. Mervis called a little while ago. They want to see Maggie in May! She said that Maggie is high priority because of her age and developmental progress, and they had a cancellation, so they could see her on May 12th. We’re trying to figure out if that’s going to work out for us (not much time to plan, checking work schedules, checking budget, possibly moving, etc.), but I’m really hoping that it will work out. Plus, its been a long time since I went on a big road trip :)

The Return of the Maggie

Monday, April 14th, 2008

Today is Maggie’s 11 month birthday! I cannot believe she is almost a year old!

Maggie had a great time with her grandparents. It was weird for me and Tyler to have her gone for a whole week, and we missed her so much! We did see her on Thursday, and I saw her Saturday and Sunday, so I guess it doesn’t count as a full week away, but it felt like 1 month! We were so glad to have her home.

Last week, Maggie started crossing her fingers. I thought that was so cool. We were watching the Masters on Sunday, and she was just sitting there with her little fingers crossed, like she was hoping for a particular outcome. I think it must have worked, because Tiger didn’t win, which made her Grandiddy very happy :)

Maggie also stood up for a few seconds by herself last week. Her Poppa was sitting with her on the bed, and she stood up holding on to him, and then she let go, and stood for a couple of seconds before falling over. We’re so proud of her! She also started crawling much faster this week. Ever since she got home, she’s been crawling all over the place, and I’m realizing that I need to go get a baby gate or baby fence of something. She’s too fast for me now!

We’re hopefully looking at 2 houses tomorrow, both of which we think are strong contenders. Hopefully, we’ll find a place soon and can get this show on the road. I am so tired of working in the bedroom!

On another note, we got a call from the people at BabyNet today (the state program that will evaluate Maggie to see if she needs speech therapy, occupational therapy, and physical therapy). She will be assigned a case worker sometime today, and they should contact us soon to schedule a time to come out and evaluate her. I’ve decided that since I know the areas that Williams Syndrome kids have the most trouble with, I’m going to make an extra effort to work with her on those things. Maggie has been able to pull the rings off the rod (don’t know what this toy is called, but I had on as a kid, too…stacker, maybe?) for a while now, but she can’t quite put them back on. She mostly just wants to put the rings in her mouth. She’ll start putting the ring back on, and then she decides that she needs to taste it again.

Another fun milestone…she took her first bath in the big tub at home last night. She’s had a bath in the big tub at Poppa and KK’s, but this was her first one that I was around for, so its the one that counts. :)

That would be an emphatic “no”

Saturday, April 12th, 2008

So we went to the Genetics Center to have our appointment to go over Maggie’s results. It went well. Tyler really liked the doctor, and we got all of our initial questions answered. They told us all of the details about Williams Syndrome, many of which we already knew from our internet research. We did learn a few new things, and we found out about particular resources available to us. We got a list of what we need to do next…all of the additional tests and assessments that need to be done. Looks like we’ve got quite a journey ahead of us.

Our genetics doctor is apparently very against “over parenting,” and I feel pretty confident that he will help keep me in check, because I know I have a tendency to take things a little far sometimes. I want to make sure Maggie is taken care of and that she has every opportunity in the world, but I also want to make sure that we treat her the same as we would any other child (for the most part, at least).

The really good news from the appointment is that they found Maggie to be at an appropriate developmental stage for her age, as far as her sitting up, crawling, standing, and cruising. We’ll be able to find out more when we get all of her assessments done to find out if she needs speech, physical, and occupational therapy, which will, hopefully, be soon.

I will write later…on my way to get Maggie from grandma’s house!

Happy Singing Elf Syndrome

Wednesday, April 9th, 2008

So Maggie has Williams Syndrome. I call it “Happy Singing Elf Syndrome”, because that’s the short description of some symptoms, and I need to find humor in any situation. Of course Tyler and I would have a child with an extremely rare, and pretty weird, genetic disorder. I mean, everyone has heard of Autism and Down Syndrome, and people kind of understand what is up when you say “My kid has this.” With WS, no one knows what it is, not even some doctors, and when you explain it, it almost sounds like you’re making it up. The short version is that Williams Syndrome is a micro-deletion of chromosome 7, which means Maggie is missing some genes. When she was made, the genes just decided to not show up on time like the rest of the genes (they must have been Tyler’s…I’m always on time.) People with WS are usually small, with “elfin” facial features, superior abilities in music and vocabulary, deficiencies in spatial reasoning, mild to severe heart problems, mild to severe developmental delays and mental retardation, and they are often extremely outgoing and happy. They aren’t afraid of strangers or worried about what is appropriate behavior in social situations, but they are extremely caring and fun. Hence “Happy Singing Elf Syndrome.”

*I apologize in advance if anyone reading this feels that I am insensitive…I just have an odd way of coping, I guess. I know it is a very serious disorder with very serious consequences on our children’s lives. *

Here’s the story of how we came to find out that our little girl is actually an elf:

Maggie was born very small (4 lbs. 12.5 oz.) at full term. The doctor’s said that I may just have small babies, and that she was healthy, so we shouldn’t worry. She was nursed almost exclusively until she was 7 months old, so the doctors said that breastfed babies were smaller and there wasn’t anything to worry about. Maggie gained weight steadily, seemed to be a good little eater, never got sick, never got a fever, never got diaper rash…nothing. By all accounts, totally typical baby. She started rolling over, sitting up, crawling, etc at about the time that she should start these things, so no developmental issues that we knew of. She babbled, said “mama,” “dada,” and “goo-y goo-y goo-y,” so we figured all was well there.

At her 9 month well visit, her pediatrician heard a heart murmur. She said that it was fairly common for children to have a heart murmur at some point during childhood, but had us referred to a heart hospital for an echocardiogram. About two weeks later, we had the echo done. It took an hour to get Maggie to chill out and let the lady do they echo…she was really tired, but didn’t want to go to sleep while so much was going on. We left, figured there wasn’t anything to worry about, and basically forgot about it.

About a week later, the pediatrician calls and says that Maggie has a narrowing in her aorta, and that this narrowing is associated with something called Williams Syndrome, which makes people small and look like elves. She wanted to get us appointment with a pediatric cardiologist and a geneticist.

I start flipping out. People have been telling us that Maggie looked like an elf her whole life, she’s always been small, and this heart thing…too much to be coincidence. I frantically scour the internet reading everything I can find. I see something that says their lifespans are limited and their children have a 50/50 chance of also having it. Pardon my French, but that’s when I lost my shit.

I was angry at myself, because even though I knew that Williams Syndrome happened totally randomly and it was no one’s fault, I felt like I had let her down. I was angry at everyone who had a baby with nothing wrong with them. I was angry at me and Tyler, because I felt like our baby was going to suffer because of some karmic retribution for everything bad we’ve ever done. I was angry at everyone and everything. I was distraught. I didn’t want my baby to spend her life in and out of hospitals and doctor’s offices. I didn’t want her to miss out on anything or have any additional difficulties, because the world is a tough enough place even if you’re “normal.” I thought about the best things that have happened in my life (solo road trip across country, falling in love with her daddy, and the best…having a baby), and I realized there was a possibility that she would never be able to do some of them. I was so pissed. Tyler took it very well, and that made me more pissed. “I’d love her just as much if they told me she was a fish” was his attitude. I tried to throw myself into my work, which wasn’t hard since I have been absolutely swamped for about 4 months. I played with Maggie, worked, played with Maggie, worked, maybe ate, and then passed out at night so that I didn’t have time to think about it.

The more I read about it, I couldn’t decide if I thought she had it or not. She had never been sick or been behind developmentally, so that made me think she didn’t have it. But she is small, has the facial characteristics, is very friendly, loves everyone (never fusses when she gets passed around from lap to lap), and she has always enjoyed music. But then, I thinks he would have had a lot of these traits anyway. Tyler is super friendly to everyone, and never met a stranger. Both of our families are very musical and creative. I thought my head was going to explode.

Our appointment with the pediatric cardiologist went well. They checked her out, and told us that her narrowing (Supravalvular Aortic Stenosis…narrowing of the aorta just above the aortic valve) was as mild as it could be and still be there. So that was good news. He said that he wasn’t going to schedule a surgery since it was so mild. If it gets worse, she may have to have open heart surgery to widen her aorta at some point, but we just have to monitor her for now. Echocardiogram every 6 months. She also has Branch Pulminary Stenosis (narrowing of the main arteries that go to the lungs), which most babies have, but it usually goes away by about 6 months old. He said that she looked a lot like the other Williams Syndrome kids that came to his office, but that the geneticist would be able to tell us more.

For the genetics appointment, they said they couldn’t see us until May. this was March. I wasn’t about to wait 2 months. I went to the Greenwood Genetics Center as a child, because they had a regular pediatric clinic at the time, and we contacted my old pediatrician, who happens to be one of the founders. He said he would love to see us, and fit us in before the end of March. Rock!

So we went, they asked us a million questions, checked Maggie out, and took her blood for the FISH test, which would tell us if she did in fact have WS. The Dr. told us that he would be very surprised if she didn’t have it, based on the SVAS, her size, and her facial features. Tyler wasn’t able to go because of work, but I told him everything as soon as we left the office. So, we decided that she probably did have it. Now what?

We waited two weeks for the results. Got the call (last Wednesday, I think) that she does have it. We’ve been pretty good so far. I think we were kind of expecting it, and have already kind of made peace with it. She’s not the little girl we thought we were going to have, and I absolutely hate to think that there’s anything wrong with her, but she’s still the same little girl we’ve been in love with for the past year and a half. I may still be in shock, and I may not have fully accepted it, especially since there doesn’t seem to be anything wrong with her. I don’t know. But I have been a lot better than I thought I would be. She’s still Maggie, I still love her more than anything, and I’m still going to work my butt off to make sure that she has a good life. She, so far, doesn’t seem to have it very severe, and we’re just so thankful for that.

I also joined the Williams Syndrome Association and subscribed to the listserve email list. I think that is one of the best things I could have done, because everyone on there was very supportive, and had lots of information. Although I don’t really want to be in their “club,” since it means that I am the parent of a child with an extremely rare genetic disorder that may cause mental retardation, heart problems, and a short lifespan, but I am very thankful that there is a resource like this out there, and I think it will be very beneficial to be a part of it. Thank you to all of the WS mommies and daddies for your support!

So, tomorrow we have our meeting with the geneticist and genetic counselor to go over the results, diagnosis, and what we do next. I’ve got my list of questions ready, Tyler is going to get to go, and Maggie will be hanging out with her Poppa, so I think we’re good to go.

Wish us luck!