Archive for the ‘life in general’ Category

MIA - Again

Friday, March 19th, 2010

It has now been over a year since I’ve written here. I’m not really upset about it, though, because I’m fully aware of the reason that I haven’t.

In late February of 2009, I found out that I was pregnant. Since then, I went through nine months of a pretty easy pregnancy, gave birth to a beautiful baby girl, and watched my darling Maggie fall completely in love with her baby sister (as we all have). And I just didn’t want to think about Williams Syndrome while all of that was going on.

I know that it is a luxury that we have that a lot of people don’t…being able to put the WS at the back of our minds and not really consider it in our day-to-day lives. Yes, we have three therapies per week and doctor appointments more often than a “normal” family, and Maggie’s unique personality and delays are more apparent now than ever, but, for the most part, I feel like our daily life is fairly…well, “normal.”

I couldn’t think about WS when I was pregnant. I couldn’t think about genetic disorders and heart conditions. Unless it came up, I didn’t want to think about. And this blog had become a “Williams Syndrome blog” to me, and was no longer a “Maggie blog.”

Does that make sense?

I love having friends in the WS community, and I love the sharing and support that only people who understand Maggie’s disorder can offer, but I didn’t like feeling guilty when she was doing great. No one made me feel that way, but I felt it just the same. I read other families’ stories about heart surgeries and erratic behavior and fighting with school districts and I just didn’t want to think about it. I didn’t want to ask for help and advice on potty training when there are other people trying to make sure their kid survives major surgery, you know? I’m sure that burying my head in the sand is not the best way to go, but that’s what I needed.

But I did feel bad about not writing for one major reason…for the information. I know how valuable it was for me to read about others’ experiences with WS when we first got the diagnosis, and I want to have something out there that might do the same for someone else.

I also have to confess that I’ve been cheating on this blog (gasp!) with another blog. I started another one that was for me. Not a pregnancy journal or WS journal or whatever…just for me, and whatever I wanted to say. I’m still keeping up with it, and do write about our family and WS and Maggie and our new baby girl, and I hope to repost some of that here very soon.

Until then, though, here are a few photos of my darling girl, a year older, a year wiser, and more than a year feistier.

Life is Beautiful - playing outside

Life is Beautiful - playing outside

Life is Beautiful - playing outside

Mommy’s Birthday

Friday, February 13th, 2009

So, today, Friday the 13th, is my birthday! It didn’t start out so great, with the first hour or so that Maggie was awake being spent trying to clean puke off of Maggie and Mr. Teddy, with limited success. But, I did get to spend some time with my baby before she left for a weekend with Grandma and Grandpa! Here are some cute pics of her from this morning (my photos to look at while missing her this weekend).

Baby puke is not as bad as I thought it would be

Tuesday, January 27th, 2009

Our poor little girl was up most of Sunday night, getting sick all over her pajamas, sheets, teddy, and blanket. We don’t know what caused it, but she could not keep anything down. Even after she got some sleep, she still couldn’t keep down any fluids or food. She couldn’t even keep down water or Pedialyte.

Even though we’ve never given her soda before, warm, flat Coke was the only thing that would calm her stomach. I gave it to her with a spoon, because I knew she would drink it too fast if I gave her a cup. This totally worked, and I was able to get her to keep down two saltines, some coke, and a little Pedialyte.

So, even though I still don’t want to give her soda (so she won’t become a Coca-Cola addict like her mom), I have decided that my parents were right. The best thing for a kid who is throwing up is a warm, flat, Coca-Cola. Thanks mom and dad!

She’s now doing much better. She hasn’t thrown up since before we went to the doctor yesterday afternoon, and she’s kind of getting her appetite back. I’m pretty relieved, because even though the actual puke didn’t gross me out as much as I thought it would, I felt so bad for my little girl. She would get sick, then she wanted to jump and play, then she’d get sick again. She seemed so confused. I tried not to let her play and run around, but keeping a 20 month old still is something that is easier said than done.

So, yay Maggie for beating that mean little bug :)

Christmas

Thursday, January 22nd, 2009

I just had to post these…I can’t believe how much she has changed in just one year!

Christmas 2007

Christmas 2008

Finally

Saturday, January 17th, 2009

Well, I finally updated the blog software, so I’m now able to post again. I am such a slacker.

I’m really going to start updating this more regularly again, now that its fixed.

I don’t think I’m going to do a catch up post, because that will seem daunting and I’ll put it off and then never start posting her again. So, I’m just going to say that the past few months have been crazy, but good, and we’re all doing well.

So, here are some cute pics from Halloween that I absolutely love. Maggie was a Fairy Princess :)

No More Living Out of a Suitcase!

Tuesday, November 25th, 2008

So I finally have a minute to sit down for an update. Whew! The past few months have just been insane! I’ll try to give everyone a brief overview, since so much has happened in three months.

1. THE CONDO. We finally sold the condo! We got an offer in September, and we closed on October 3. We barely got everything out by closing. I was literally pulling out of the parking lot with a car full of cleaning supplies when they got there for their final walk through.

2. THE NEW HOUSE. While waiting on our place to close, we made offers on two houses. Neither offer was accepted because they said our offers were too low (those houses are still on the market, by the way). Immediately after the closing, we went with our realtor (and Maggie, and Tyler’s parents) to go look at a house, because we still didn’t have a house picked out. We went to this cute little bungalow that we had previously written off because it didn’t have enough bedrooms or bathrooms and was kind of expensive. We knew when we walked in the door that we wanted it. We were there for 20 minutes, then went to our realtor’s office and made an offer. We went back and forth over the weekend, and we had a deal by the middle of the following week. We scheduled our closing for the first week of November.

3. HOMELESS. Some wonderful friends of ours let us stay with them until we had a new place. They had an extra bedroom and a room over their garage, so Maggie was able to have her own room and Tyler and I had ours. It was so amazing of them to let us stay there, especially since it ended up being more than a month. It was kind of tough, since they live so far outside of town. Also, as much as we love them and they love us, it was a bit rough sometimes with four adults, one baby, two dogs, and two cats all under one roof. I think they were glad to have their house back, and we were glad to have our own place after more than a month. Maggie had a great time there, because she always had people to play with. She got to go play in their yard, and play with the doggies. She didn’t even mind the train that went right by the house about 10 times a day. Anyway, I don’t know what we would have done if they had not let us stay at their house, and we are forever indebted!

4. THERAPY. While we lived with our friends, since their house was so far out, we had to have Maggie’s therapies at another friend’s house. We didn’t want Maggie to lose her spot with her thereapists, and have to go back on a waiting list. So, whenever Maggie had therapy, I had to drive like 45 minutes there and back, while lugging Maggie and all of her therapy stuff, and food, and a Pack N’ Play in case she got tired. It made me so thankful that we were able to go back to “home” visits when we got in our new house. That traveling so far three times a week was not fun for either of us. But, it worked out, and I’m so thankful to my wonderful friend for the use of her house for a month! We have the greatest friends ever!

5. MAGGIE’S PROGRESS. So Maggie has been growing and developing by leaps and bounds lately! I really think all of that time living with so many people really helped her! While we were living with our friends, Maggie started walking! She had taken a few steps before, but never really multiple steps. On Tyler’s birthday, right after he got home, she just started walking (I think she was going after some video game thing she wasn’t supposed to play with). It was amazing. She just got up and went! She’s also started talking some, and is doing great. Here is her word list: hey!, bye bye, uh-oh, bubbles (bubu), pop, no, no ma’am, baa (like a sheep). She also signs “more.” She kind of has it confused with “I want,” but it works for us. And the “no ma’am,” we weren’t intentionally teaching her manners…she just copies us, and we say that to her a lot when she is doing something she shouldn’t. She’s also kind of getting “thank you,” or something that sounds a lot like it.

6. BUYING A HOUSE. Buying this new house was a huge pain. When we bought the condo, everything went perfect and quick. So, I guess we used all of our good house buying karma back in 2006. This time, almost everything that could go wrong, did. After we had the deal, something came up every time we went to the house. We went for the termite inspection, and they found termites. We went to get an estimate on replacing the tub hardware (claw foot tub with low water pressure) and they tell us that the pipes under the house need to be replaced. We went for something else and their was a leak in the kitchen ceiling. Then, we went through this special City Lender program (neighborhood revitilization and preseveration), and we had several lenders working on our loan. Apparently, they didn’t talk much, and everything was a huge mess. I ended up spending most of my days for about 3 weeks signing things, faxing things, calling people 10 times per day, and being about as stressed as I’ve ever been. We ended up having to push closing back a week, and we were surprised the morning of closing to find that we needed a whole lot more money for closing than they had estimated. Even though it was a huge pain, we absolutely love the house, and are so glad we got it!

7. MOVING IN. The move was interesting, since almost everything we owned was in storage. Also, we own way too much stuff. At least our new house is in a great location for having a yard sale! Anyway, so the first night we had the house, Tyler and I slept here and Maggie stayed one last night with our friends. The next day, a bunch of my family came down to help. It was great having everyone helping us out so much! We got most everything in that first day! Then, that night, at about 4:30, me and my parents woke up to some really loud sound. After some investigating, we found out that some crack head (literally, look at police report) decided to play parked car pin ball on our street. My husband’s car, which is the car I got 10 years ago in high school, was the first car to get hit. The girl bounced around my dad’s car, and plowed into a BMW down the street. So, she totaled three cars in about 5 minutes. Its good to know she’ll never have a license again. Anyway, so Tyler’s car was totaled. I had this car for 10 years, driven it to Canada, Chicago, all up and down South Carolina and Georgia, and it was just parked on the street one night and met its demise. At least she died in her sleep and will now be an organ donor. I had a hard time saying goodbye. :( We were about to leave for Kentucky to go see Dr. Mervis the next week. The insurance company got us a rental car, and we drove it to Kentucky. We’re currently in the process of trying to find Tyler a new car.

8. KENTUCKY. I will have to leave for another day. Its about time to get to work…hopefully I’ll do the Kentucky update, and some more details on other things, tomorrow.

Thanks to everyone who has been checking in on us and waiting for an update! I hope everyone is doing well!

Walk like a (wo)man

Thursday, August 7th, 2008

MAGGIE TOOK HER FIRST STEP TODAY!!!

Oh my gosh, I can’t even describe how amazing today was. Maggie has been *almost* walking for months. She could pull up on furniture and kind of cruise, and even stand up a little by herself, at the end of April. So, we were pretty confused as to why she still wasn’t walking when she hit her 14 month birthday, when she was already cruising at 11 months.

On Wednesday, we had her Physical Therapy evaluation, and Maggie qualified for PT. The therapist said that Maggie probably wasn’t walking because her trunk (abs, lower back, etc), neck, and ankle muscles were weak. She said you have to be able to hold yourself upright to walk, and leg strength isn’t enough. So, today, Joe Mac and I worked with Maggie to get those muscles stronger. We had her doing little baby sit ups on the floor and in our laps, and we worked with her on bending forward at the waist and then raising back up. Now, I’m not saying this one afternoon of exercising is what made her walk, but I’d like to think it helped :)

Well, this afternoon, during her Early Intervention therapy, while Tyler and I were both with her, she was standing by herself better than she ever has. She hasn’t even been standing much lately…to the point where I thought she had forgotten how. And today, she was standing straighter and more balanced than ever, for up to 10 to 15 seconds at a time. Then, once when she was standing, she took a step. Tyler and I (plus her EI and the girl she brought who was training), all squealed so loud and clapped so loud that we scared Maggie, and she wouldn’t do it again during the rest of the session. I was smiling so much that my face hurt, and I had tears in my eyes. I was so proud of her! Her EI got teary-eyed as well, because she knows how hard we’ve been working with her on the walking. It was so great!

So tonight when we put Maggie to bed, I was holding her, and kind of dancing with her to “Twinkle Twinkle Little Star” as performed by Glow Worm, and I just looked at my little baby girl, who is fast becoming my big girl, and I got teary-eyed again. Ever since getting the diagnosis, I wonder if she’ll be able to be independent, if she’ll be able to “stand on her own.” I try to not get my hopes up too much, because I want to be realistic, and I know she has some delays. But this little girl continues to amaze me all the time. She is so motivated, and she’s such a little fighter. I am so proud of her. My heart and my head are just so full of emotion…about the walking, the imitating, the words she’s starting to say, and just about her in general. I never imagined I could love someone this much, and I never imagined that these little things that we take for granted every day, would be so wonderful and magical and mind-blowing to see my daughter doing for the first time. Growing up with a family member who is disabled, I know how tough things can be for an individual and a family. I am so thankful for Maggie, and I’m so thankful for how well she is doing. I never thought that my child would have a disability. I never thought that my child would have delays, or health problems. But now that I know she has WS, and I know that she is doing so fantastic with all things considered, I really appreciate every little victory so much more. Today, she showed me that she can stand on her own :)

I love you, baby girl :)

So, a quick update on other parts of our life (which all pale in comparison to Maggie’s milestone)…Tyler’s physical went great and he’s in pretty much perfect health according to the doc; Maggie is becoming a ninja warrior in the battle against sleep…she can evade sleep (naps or overnight) better than anyone in the world, which makes it hard to understand how she comes from the same genes as Tyler, who could fall asleep during a fireworks display; and I’m making an appointment with the eye doctor soon to see if my headaches are being caused by eye strain, as my parents and husband have deduced. Also, we scheduled our next trip to see Dr. Mervis in November, so I’m really looking forward to that.

And thanks to Tes and Julie for the possible sleeping situation solutions. We’re hoping that soon we’ll have everyone in our house sleeping soundly, because currently, the only one in the house who is well-rested is the cat. :)

I’m hoping to get caught up with all of the other blogging mommies this weekend…hope everyone is doing well, and I can’t wait to see how all the kiddos have been lately :)

What’s Up, Buttercup?

Tuesday, August 5th, 2008

So I haven’t updated this in a while. I think its just because I haven’t felt like writing. I guess I’m just in a weird funk…not really wanting to write, because I know I would just complain a lot.

But, I decided that there are a lot of good things going on, and I should write about them, even if some complaints sneak their way in.

Most importantly, Maggie is doing great. She has mastered putting objects in containers, and I still feel like I could squeal every time I see her put a block in a bucket. I’m just so proud of her.

She’s also gotten good at giving high fives, and giving an object to someone when they hold out their hand and ask her to give it to them. She’s kind of saying “hey,” and “no” keps trying to say Daisy (it still sounds like “day,” but I know what she means :)

She’s not walking yet, but she is getting better at reaching from the couch to the coffee table, and she seems to be getting more confidence. She has her evaluation for Physical Therapy tomorrow, so hopefully she’ll start that soon.

We go week after next to see the Special Needs coordinator for Maggie’s pediatrician to see if she’ll write Maggie a recommendation for TEFRA, which will help us pay her medical bills if Maggie qualifies. I’m keeping my fingers crossed for that one, since that would be a huge help.

Maggie is doing well in her speech and early intervention therapies, and she seems to be improving. I love both of her therapists, and I really do think it is really helping Maggie.

Maggie has been having some issues with sleep lately, mostly note wanting to do it. She fights sleep like its her mortal enemy, and she puts up a good fight. Sometimes, she whines for hours in her crib before she loses, even though she’s rubbing her eyes and can barely lift her head the whole time since she’s so tired. We got her up at 6:30 this morning, hoping to wear her out today and stop this falling asleep at midnight or 1. Its great for my schedule, but I know its not good for her, so we’re going to try to get it taken care of.

No offers yet on the condo, but I’m still hopeful. We’ve had several people who said they were really interested, so I hope something happens soon.

The house we liked in Olympia didn’t pan out. The owner wouldn’t respond to us when we asked it we could get the foundation checked out before we made an offer, so we decided that she knew something was wrong with it, and we just decided it wasn’t worth the battle, since she seemed kind of uncooperative.

We found another house we like in Earlewood, but its way out of our price range. We might just make an offer anyway, since its been on the market for so long, and just see what happens.

Tyler goes in today for his long overdue physical, and he’ll be having a sleep study done at the end of the month. I hope they can get him to stop snoring. I feel pretty bad not waking him up when he falls asleep on the couch, but really, I need my sleep too, and I can’t take much more of the snoring. I’ve already got my own insomnia to deal with, and I need some quiet if I’m going to have a shot at rest. I mean, come on, how can someone who is not even conscious be so loud?!

And me…I’m here. I just feel really off lately. Overwhelmed, tired, kind of sad, kind of angry, kind of bitter. I am counting down the days to my beach vacation with my mom and aunts in October…I absolutely cannot wait! Only 2 more months!

The One?

Thursday, July 10th, 2008

So we found a house that we really like. Its in a pretty decent neighborhood in town that is supposed to be “up-and-coming.” Its a cute, old, mill house, built in 1910. Its been added on to several times, and has some very interesting quirks. It appears to be in good shape, and was at least clean. There are some thing about it that I know will need to be fixed and updated, but overall, I really love it. Tyler really likes it. Maggie even seemed to like it.

Living Room, looking towards front of house and front bedroom (notice the crazy rock wall)

Front bedroom…wall that used to have a door to the front porch

Front bedroom ceiling…cool, but is that safe?

Bedroom 2…across the hall from the front bedroom

Looking down the hall to the back of the house, towards bedroom 2 and bathrooms

Bedroom 3…down the hall from the second bedroom

First bathroom and laundry room

Looking back up the hall towards the front of the house and all 3 bedrooms (bedroom 3 and 2 on the left, hall closet in front, and front bedroom at right)

Dining Room (once you come out from the hall after passing the second bathroom), looking towards back of house and kitchen (bright red paint?!)

Overhead view of house from Richland County website

Shot of house from listing

Keep your fingers crossed for us!

Where do the days go?

Sunday, July 6th, 2008

Way too much to report, as we’ve been going 80 the past two weeks, but here’s the short version (or as much as my dead brain can handle explaining):

1. Tyler’s car broke, got it towed to Greenwood to get fixed, didn’t get it back for like 2 weeks.

2. Air conditioner broke, four days of me and Maggie at home with no car and no AC in 90-100+ temps (thermostat was maxed out reading 85 for three days. The old joke “What separates Columbia from hell…a screen door” came to mind quite a bit.

3. My computer is on its last leg, so I finally had to break down and order a new one which should be here in the next 2 weeks.

4. Had like 5 website that needed to be completed during this time with no AC.

5. One of my favorite people in the world, a roommate from college who I haven’t seen in 3 years, came for a brief visit.

6. 4th of July was super fun as Maggie got to spend it playing with Lily and I got to spend it eating cake and relaxing while not answering my email.

7. Maggie is super close to walking and is learning all kinds of new things, like how to give high fives and starting to say words that actually sound like words (A DAY! while waving is “Hey Daisy!”, greeting the cat). Oh, and she’s waving and clapping her hands like a madwoman!

8. Seven people have come to see our condo since its been on the market…that has to be a good sign .

9. My dad is one of the most awesome people ever…I would have lost my mind if not for his help the past few weeks.

10. Oh, and I have the most wonderful, precious, amazing daughter in the whole world. She’s so cute that even being stranded at home in the sweltering heat and not being able to do any more than five minutes worth of work in 2 hours is ok as long as she’s camped out in front of the fan with me.