October 23rd, 2008

So I haven’t blogged in a very long time, and I just wanted to post a fast update to say that we have not fallen off the face of the Earth, and that we’re all doing well. It has been absolutely insane for about 3 months now, and I’m hoping things will calm down soon. I’m planning to write a big update post as soon as possible.

Hope everyone is doing well!

Walk like a (wo)man

August 7th, 2008


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?

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?

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?

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.


June 24th, 2008

So I don’t have much time to write because I need to get to bed, but I had to share this story.

I was working on the computer today, and Joe Mac (Maggie’s nanny/manny) was trying to get Maggie to take a nap before her speech therapy evaluation. She didn’t want to, so she’s just laying in the crib screaming, or so we thought. So, she’s crying, and he goes in to try to give her a bottle to see if she’s hungry. I’m listening on the baby monitor…it goes something like this…

Joe Mac: Hey Maggie, look! I brought you a bo-ttle!


Joe Mac: Hey, what’s that?


Joe Mac: Hey…that’s…MOMMY!!!!

So I run in, and I see Maggie, screaming her head off, with little round deer-looking poo in both hands, and all in her teeth. I mean, all in her teeth. Is this where the phrase “(poo) eating grin” came from?

Joe Mac is panicked, and now, so am I. I grab her, trying to keep a hold of each arm so she doesn’t put more poo in her mouth or on me, and run to the bathroom. I put her in the tub (still in her clothes, that have somehow managed to not be covered in poo), and start frantically trying to figure out what to do. I had Joe Mac get a wash cloth to get most of the poo out of Maggie’s mouth, then I had him her her tooth brush. I got the poo out of her hands, got her clothes off, and started running a bath. She was still screaming bloody murder, as I imagine I would if I had poo in my mouth.

About this time I realized that she had to have dug this poo out of her diaper, because it wasn’t all over everything (not on her clothes, not really in the crib except one tiny smudge, etc.). It wasn’t even on her legs. Just in her hands and teeth.

I wonder if poor Joe Mac will come back on Wednesday…not sure if I would if I were him.

80 chicken feet

June 14th, 2008

Maggie’s therapy went really well this week. Here EI said that she can see a huge improvement in Maggie from week to week as far as how much more focused she is, and how much more interested she is in playing. I don’t know if its Maggie getting more comfortable, because she never really seemed uncomfortable. She really does just pay attention more. Like when the EI blows bubbles, Maggie actually turns her head to watch the bubbles as they move, and she ever kind of reaches for them. Before, she just sat there and looked at the EI who was blowing the bubbles.

Also, Maggie is just doing so well with her confidence in walking. She will walk more now when you’re holding on to just one hand, where a week ago she would almost almost just freeze and plop down if you let go of one hand. She’s getting better at standing on her own, and will sometimes do it for a couple of minutes. Tonight, she kind of picked up one foot while standing, and put it down slightly in front of where it was before. I just know that she will be walking soon, and I’m so excited for her. It really makes me feel like I’m going to bubble over.

She’s also gotten to where she likes to jump on the bed, while holding on to someone or something of course. But it is just too cute. She gets really excited, and scrunches her little face up and grins as big as she can. I really think Joe Mac coming over during the day is really helping her. I just cannot thank him enough for all of his help.

I look at her now, and I see less of Tyler than I did before. I don’t know if I really see me so much, but its definitely not as strong a resemblance to Tyler as it was. Maybe that’s because she’s getting more hair :)

Oh! Also, this week, we got some baby pictures of Daisy from the people who gave her to us! Thanks Jerry! He said he sent them to me so that one day, when she comes up to me and asks “Mommy, am I adopted?” I can show her those and set her mind at ease. She doesn’t have to know :)

Daisy as a kitten

Daisy as a big kitty :)

So yes. 80 chicken feet. That is what was covering my dining room table all afternoon. Dried chicken feet, some painted gold or silver, some painted white or black, and some covered in some kind of “tool dip” that makes them look plastic. Some of the chicken feet were not even painted. They just sat in their little ziplock bag on my table, looking gross. Apparently, Maggie thought they looked yummy, because she kept trying to climb out of her high chair to get to them (don’t worry, I didn’t let her get anywhere near them, and I washed and disinfected everything in the general area of the house once they had been removed). So, these painted chicken feet were covered in black skeleton print fabric, and tied with black and purple ribbon or hemp cord. Me, Tyler, Joe Mac, Bob, and Sarah, sitting around the dining room table, wrapping chicken feet. It was craft time on Friday the 13th at our house.

Currently, my husband is likely at the bar, dressed in a frilly blue ankle length nightgown, next to his bandmates who are likely wearing wizards’ capes, silver pantsuits, or dinosaur costumes (or all of thee above). There should be at least 6 people on this stage, which is really just the corner of a small room in the basement of the locals news building, all dressed up and handing out chicken feet or gold spray painted dinosaur toys.

I swear, I could not make this up. I just wanted to make sure I got it down so that I could tell Maggie about it when she was older. What does this say about her father and his friends? For that matter, what does it say about her mother? A mother who participates in this…whatever…because she cannot stand to see people do something half way. If you say you’re going to decorate 80 dried chicken feet and dress up like a drunk college boy at Halloween, then here is an extra pair of scissors and here is a new nightgown from Target, so you don’t mess up any of my good ones. Poor Maggie…there’s no way she’ll grow up “normal”…genetic disorder or not :)

Maybe a little too much bacon

June 11th, 2008

So a quick update while Maggie is sleeping.

Maggie’s eye doctor (ophthalmologist?) appointment went well yesterday. Except that we had to wait over an hour in a hot waiting room full of really loud kids in chairs with no backs that were pushed up against a huge fake flower arrangement that was sticking in the back or our heads, it was great. Really, Maggie was very well-behaved, and super patient, and she was so good when they were checking her eyes. The doctors and nurse said that she needed to teach the other kids how to be such a good patient, and they went on and on about how cute and happy she was. I never get tired of hearing that. Don’t think I ever will. Her eyes are apparently fine, and while she may be a bit near-sighted, they said they think she’s good, and they’ll see her back in 6 months for a follow up.

Now the coolest thing about this appointment was that the ophthalmologist has a really good friend with a son who has WS. He said this friend went to school with him, also an ophthalmologist. The son is in his 20’s, and doing very well. This is the part where I got confused. The doctor either said that the son with WS has 5 children, only one of whom has WS, or that the son with WS is the only one of the friend’s 5 children who has it. I wanted to ask more, but we were so hot and tried, and Maggie had not had a nap all day, and we really wanted to get home. I plan to ask him more the next time we go.

Wow, this update ended up not being so quick.

Tyler’s new band is playing on Friday at the Whig. The band is called “Animal Husband’s Puberty Ritual,” and I think its about the worst band name I’ve ever heard. They’re apparently not going to have any specific style, and not really have an exact roster of members. I guess its going to be a jazzy, psychedelic, techno rock band with a rotating cast. I’m not too upset that I’m going to miss the show on Friday, but I am kind of sad that I went get to see them giving out dried chicken feet. I just want to see what the audience in this small club thinks about a band that doesn’t really have songs and gives them gross, dried, animal parts. These boys have a weird sense of humor.

So, that brings me to me…I’m crazy busy with work, tired of cleaning, thankful for Joe Mac (Maggie’s great “manny”), thankful for my dad (who can fix anything and work for free as my “grunt” happily), aggravated with my husband (who tries, but doesn’t seem to understand everything that I have to handle on a daily basis), in love with all of the new cute things that Maggie is doing, and constantly amazed that I have still not been driven to a breakdown. I’m glad I can get into the mind set of just “get it done”…because I think if I really stopped for too long, I would get stuck in a hole. The good thing, is that I always have Maggie to pull me out if I start getting down. She’s always the light of my life :)

Oh, and I am thankful for bacon crackers. Question: What could be better than a captain’s wafer wrapped in bacon, covered in cheese, and baked? Answer: not much.

Beatled Out

June 8th, 2008

A copy of Wii Fit should come with your health insurance. I am totally serious. I played it at Angie and Joe Mac’s house Friday night, and I am seriously obsessed. It is so fun, and I broke a sweet. The best part…my butt and abs hurt today! What could be better. I subscribed to an RSS feed that shows me when it becomes available on any of the major retailer web sites. I must have one! For real, if you don’t like the gym, get one of these! Way worth the money! There is something motivating, yet infuriating, about having a Japanese video game tell you that you’re overweight. And when you step on the board and it goes “ooow!,” you just want to hula hoop until you bring the damn thing!

So Maggie’s renal ultrasound results came back on Thursday…they didn’t see anything of concern! They only checked for kidney structure, not function, but they said everything looked good. We’ll have the tests for kidney function in the next few weeks. Maggie has her eye appointment this Tuesday, so I will update when we find out about that.

Maggie did really great this week with Joe Mac. He is so great with her! He held her hands and they walked all around the house for like 45 minutes. He took her outside, and he worked with her on all of our therapy goals. I was so impressed! He even fed her once. I’m so excited about this. I can actually get some work done, and know that Maggie is getting the attention that she deserves. I love it! She really seems to much more balanced and confident with her standing and walking now, and she just seems to be getting a little more adventurous.

I finally got a couple of projects finished, and hope to have two more done by mid next week. I’m super excited! I do have more new projects coming in, but none of them seem quite as involved as the ones I’ve been working on. Hopefully it will be a little less stressful with the new work than it has been with the latest projects. They’ve all been great projects with great clients, but its just been a lot to handle with Maggie diagnosis and appointments and all the work. It would be great o be a bit less stressed out all the time.

Maggie’s Granny and Grandiddy are getting back from England today! I’m so excited that they finally took the trip, but I will definitely be glad when I know they’re safe back at home. I was proud of myself for not worrying too much while they were gone. I’ve only worried on the days when they were traveling by plane or train, and I was mostly fine with it. When I talked to them yesterday, they said they were about “Beatled out” (they went on a Beatles themed tour). I think they ended up having a great time, though they didn’t like London so much. Too big, too noisy, to fast. I can totally understand. I can’t wait for them to get back and we can see all of the pictures!

More good news…Jonathan and Kate had their baby this week! Jack Sylas (calling him Sylas) was born on Wednesday. He weighed 8 lbs. 6 oz. He is so cute! The perfect combination of Jonathan and Kate as far as looks goes, and really a handsome little man! I was very glad that Mommy and baby were doing well, but even more glad that Sylas didn’t decide to make his appearance two days earlier when his mommy was sleeping on my couch. Congrats to the happy family!

Tyler’s car is having troubles lately. Its leaking oil, we replaced the battery yesterday, and now it won’t start. Turn the key and nothing happens. No noise, nothing. So, he is driving the Mustang, which leaves me with no car. Not that I have to go anywhere most days, but the next few weeks are full of times where I’ll need to have a car. I hope this gets resolved quickly. I know the Infiniti has like 300,000 miles on it, but I just need it to last until we get into a new house. We can’t afford to get a new car right now. Keep your fingers crossed that “TwInfiniti 1″ pulls through!

Here are some recent pictures for your viewing pleasure :)

Hungry Maggie

Maggie sitting on her car. She hasn’t figured out how to make it move yet.

This is the Daddy bird who built a nest in our fern. His babies have hatched, and now I can get back to saving my pitiful fern without a bird coming after me!

Maggie hanging out with Great Aunt Trish. Trish LOVES babies, and especially loves Maggie! Maggie wanted to get at her glasses :)

(l to r) Maggie, Avery, and Lily in baby prison during our vacation to Greenwood.

Why do the girls always attack the boys?

Angry Maggie

Daisy, who wishes I would put the camera down and go get that furry tail thing for her to play with


June 2nd, 2008

So we just got back from our vacation. It was tons of fun…not really restful and relaxing, but still very fun.

Maggie has a new “manny”…her uncle/self-proclaimed Godfather Joe Mac is here with her right now playing. He will hopefully be coming by several days every week to watch her and play with her while mommy works. I’m so excited about this!

Things are pretty crazy here right now, but I wanted to put up a little update. Maggie has her renal ultrasound tomorrow, EI on Thursday, and maybe her speech and OT evaluations this week. She’s so close to walking…she’ll walk if you hold both of her hands, and she seems like she’s balancing well, but she freezes when you let go of a hand. I think we’ll get it soon. She’s also eating table food more often now. Over vacation, she ate pasta, chicken, banana, cake and ice cream, potato salad, and some fish. Now she’s not much a fan of her baby food anymore, which means mommy needs to learn to cook.

Will get a more detailed update soon :)