Wednesday, October 21, 2009

Sick, sick, sick ...

So Maggie fell ill with food poisoning! A child that is g-tube fed and who hardly eats anything ... and she gets food poisoning??!! My 'black-olive-hummus-loving' hubby decided to let her share (or in Maggie's case, lick) his portion of his lunch on Sunday. Well, that little lick she had must have been enough because it was a short while later and I had a husband AND a three-year-old with exactly the same symptoms: Belly aches, vomit, diarrhea and lots of whining ... how pleasant! So it meant taking Maggie to the ER at 10:30 Sunday evening.

I was afraid she would get dehydrated since she couldn't keep anything down and she has had a history with the dehydration. But there she sat on the little hospital bed, making googly eyes at her Tigger and giggling to herself, while her poor father moaned and groaned. He sat half-asleep on a purple 'hospital-visitor' chair in the corner. Needless to say, she was fine. And he was not (since he did consume almost half of the container of hummus). We left completely exhausted about five hours later. But at least Maggie was happy and didn't seem to notice all the fuss (probably because there was a special lady that was solely there to keep Maggie happy ... thank you Danielle).

Three days later and Maggie's tummy is slowly coming right. She's digesting more milk now. And we are giving her less Pedialyte. So all's well that ends well :)

Saturday, October 3, 2009

Leaf Man!

Ben had a cold about two weeks ago. He got over it eventually. But two days afterwards, he was sneezing terribly. And his nose ran profusely. I thought that maybe he had developed allergies. Until one sunny Sunday morning, we were all in bed together as a family. Ed was feeding Maggie. And I was feeding Ben. He drank the whole bottle, as usual. As soon as he finished drinking, he sat up and sneezed. And sneezed. And sneezed again. He sneezed six times. When he was done sneezing, I noticed that he had sneezed something dark green and slimey (this would be a good time to put that BLT down ... you can eat it later). I wiped his face with a tissue and thought "Oh no, this little guy has a sinus infection ... no wonder he's been so miserable!" Upon further investigation, I realized, much to my shock and horror, that it wasn't a sinus infection. The little man had just expelled a 2-inch long leaf from his nose!! We spent the next half hour discussing how it could have possibly happened. He does have an appetite for anything that has it's own photosynthesis process. It will always remain a mystery I suppose. Let's just hope it never happens again!

Wednesday, September 30, 2009

Maggie received her foot braces today!

This morning we had a mini scream fest on our hands while Tom tried to fit Maggie's new plastic ware. But as soon as he left the room, Maggie squirmed off my lap onto her new little feet. The difference was remarkable! When I held her hands while she was standing, she felt so much more stable and firm on the floor. She was wiggling around and when I looked down, she was actually doing a running motion with her little legs. She wanted to go! So I took her down the corridor ... and it was bliss! For a little girl with new 'shoes' ...
Now if only I could capture all the places she will go and the new adventures she will have! That's an entirely different blog I suppose.

Growing Up

Maggie starts school on Monday.

In a nutshell: Maggie qualifies for a Special Education program. It'll cover education, speech therapy, vision therapy, physical therapy and occupational therapy ... and definitely some play-time! Due to her broad range of issues, the school district did not have a school that they could recommend. So our case was handed over to the county. That means she could be going to any school within the entire county of Santa Clara.

Our feelings, in a nutshell: When I think about her starting school, I regret to say that I don't have a flood of nervous emotion overwhelm me. I feel bad that I probably should. But I thought about it and realized that maybe it's because I know she's ready. Maybe it's because I know that she's going to be okay. She will have fun with the other kids in the classroom. Even though she is so tiny and fragile, she is definitely one tough little cookie. I know she'll be able to handle it.

The only thing I do worry about is if they keep up with her feeding through her g-tube. They told us that there will be a nurse supervising. Let's hope there aren't too many vomiting episodes! I worry about the play-doh and crayons!!

But Ed always reminds me that there is a nurse. She's been trained to do this sort of thing. Ed doesn't seem to be nervous about the feeding. He's nervous about her going to school ... period. I suppose it does feel like public recognition that Maggie is growing up. And we're getting older :)

Wednesday, September 16, 2009

Did I put my underwear on today??

Yes. I know it's an unusually odd question, but as I was driving today, running errands, I frantically grabbed a boob, wondering if I did in fact put on my undergarments this morning!! I just went through a drive-thru Starbucks (they have strategically placed cameras), picked up Maggie's medication at a very busy and public grocery store and then ran into an overcrowded and people populated bank. It would have ruined the day ... I'm sure. And made an embarrassing story to tell later.

But, as I was driving with the two kids in the back ooh-ing, ah-ing and then complaining when "Itsy Bitsy Spider" had run it's course on my iPod, I realized I had dressed myself successfully. Everything was okay. I did only have mascara on one side of my face though. But that's alright. Who would notice that?? The woes of motherhood!!

Despite the day's events, I think Maggie is coming down with a cold. Poor thing is sneezing every time she looks in my direction. My sister-in-law was holding Maggie when she herself got hit by the Mini-Niagara Falls. But the amazing thing about Miss Maggie though, is that despite her aches and pains, she still giggles and squeals. And expresses extreme contentment when on her Daddy's arm. Kudos to Maggie ;)

Thursday, September 3, 2009

Nothing To Do ... How Wonderful!

It's Thursday morning (it feels like it really should be Friday) and the kids are still sleeping.

Ben slept like a big baby bear in the middle of winter last night ... this is a good thing!! Maggie didn't sleep at all last night. I finally took her downstairs to the kitchen at 5 and asked her what she wanted. She signed 'thirsty'. So I filled her pink little sippy cup with some cold water and she sipped away. Then, she pushed the cup away. I asked her what she wanted to do. She pointed upstairs and signed "Sleepy". I propped her on my shoulder and headed back upstairs, counting the stairs as we went (a Maggie tradition). I put her down with her pink little blankie and a sorry-looking Tigger (that I should wash today). Finally, all was quiet for the next couple of hours so we could sleep :)

As for today, I'm excited to announce that I have absolutely NO appointments scheduled (pronounced "ssssshhhhhed-huled" with a South African accent). Sometimes all these appointments drive me silly, because I would just like one day to myself and my kids. No cleaning, no dressing, no getting ready. We can just laze about. We will do this today! For sure!!

Maggie is waking up. So I'd better jump into action. And Ben has been kicking in his crib for about five minutes. Let me put them in the car and go to the Drive-Thru Starbucks :) Whoever thought of that idea was a genius!! They get a thumbs-up from every mom in this neighborhood ... without a doubt! Have a wonderful day everybody ... don't forget to have your cozy cup of coffee :)

Tuesday, September 1, 2009

A crazy week ...

After a crazy two weeks of physical therapy, speech therapy, occupational therapy, an audiology test at Stanford, a fitting for foot orthodics in San Jose, a walker evaluation and an IEP assessment ... all for Maggie ... it is now time to relax a bit!

My week was crazy, yes, and last night I thought I was going to have a breakdown of some sort. But it all dissipated when my husband walked in the door with Haagen Dazs Strawberry ice cream. He took care of Maggie while I fed and bathed Ben. Both kids were put down to bed at 8 sharp and it was time to relax! And I forced myself NOT to think about anything that could cause stress. I'm glad to say it worked. I woke up feeling much better and ready to take on whatever needs addressing today!

So that being said, I'm going to list a few positive things that also happened this week, which I think, overshadowed all the bad, icky moments:

1. Maggie is drinking milk out of a glass!!! She actually swallows the milk! She started doing it about a week and a half ago and now drinks about 1/2 cup a day of whole milk! We are ecstatic and thrilled that she does it! What makes it most exciting is that she wants to do it.

2. She is picking up so many signs to communicate, that my husband and I are falling behind! She makes up these extremely intricate little hand signals, that just floors us. Of course then we spend a few days trying to figure it out.

3. As much as I hate taking her for audiology tests and orthodic fittings (because she screams bloody murder for the entire time), she is very easily distracted afterwards. She always gets excited and lets out an expression of utter glee when she knows that she will be getting some 'icey' afterwards (aka 'ice cream').

So there ... life after all isn't so bad :) It is quite exciting with these little ones ... I wouldn't trade it, for sure!

Sunday, August 23, 2009

The Pet Shop

We visited the pet shop yesterday. We took Maggie down to see the 'fishies' and there we watched her wiggle in the shopping cart seat with glee. She squeeled and pointed at the fish, expressing such excitement. It was her first time seeing fish. And she would point to the next tank and the next to get a good look at all the different kinds. Eventually, I took her to the bird cage, thinking she would no doubt love it. There was a huge array of colorful parakeets and finches, fluttering and tweeting about. She looked at them briefly. Examined the cage. Then looked back at the birds again. After a minute or two, she promptly turned to face me and signed "All done". Guess a bird is not on the wish list for this little girl :) But we might get one anyways.

As we drove away from the pet shop, it dawned on me that she is going to be okay. Despite this syndrome that inhibits her development, she doesn't just lie there on her blanket and stare at the ceiling. She takes delight in her life. Life excites her. She has brand new experiences that make her happy. I'm glad I can witness that.

Saturday, August 22, 2009

It started with a movie ...

I've decided to start a blog. I'm sure after watching "Julie & Julia", twenty five million other inspired people will want to do so too. Oh well. Here's my version:

My little girl Maggie is sick. She has a big bad syndrome that consumes our lives. For three years now I've tried to struggle with the acceptance of it, acknowleging it and welcoming it into our home.

So instead of this being a blog about our struggles and high-anxiety moments, I wanted to dedicate this blog to my little girl, and make it an up-beat, positive testimony to our lives. Our little girl Maggie, who will be three in October, doesn't have any idea what is going on around her. She smiles, giggles, even grunts at life's simplest pleasures. So why shouldn't we?

That being said, here goes my journey. And maybe someone, somewhere, who might be going through something similar, won't be bogged down with all the negativity and hopelessness in the world; but realize that we were made to survive ... and we will. We all have our turn to do that ... so here goes :)