Sunday, November 29, 2009

This is just me...venting...

I've learned a lot since I found out about Alexis's Down Syndrome, did my research and read other parent's blogs. For example, I am to refer to my child as "my child who has Down Syndrome", not, "my Down Syndrome child." I understand the point that my child is not Down Syndrome, it's just something she happens to have. It's amazing to me though, how some people react to the wrong terminology. I'm a little afraid to be around some parents in fear that if I slip up (and I do slip up), I'll be scolded.

I read once about a parent getting angry because someone said that children with Down Syndrome are always happy. I realize that a person shouldn't generalize. I realize that obviously no one is always happy. But get mad about this statement? People tell me often that my boys are always happy. I don't get mad about that. Why would I get mad if someone told me that Alexis is always happy? Down Syndrome or not, she is almost always a happy baby! Everyone should be so lucky.

And, going back to the topic of my boys, I have also learned that I am not to refer to them as my normal children. They are supposed to be called "typical". I looked up the words in my thesaurus. Hmmmmm. Same thing. Apparently, by calling the boys normal, I'm implying that Alexis isn't normal. So I guess it's okay if she isn't typical, but it's bad if she isn't normal. Even if normal = typical? Seriously? (And I don't call them normal anyway, because they're not. Normal 4 and 6 year olds don't sit in their bedroom playing quietly together for over 5 hours!!! Yes, I had to go keep checking on them today to make sure they were still there. My kids aren't normal. But I'll try to make sure not to use that word anyway.)

(Note: I DO agree, and most everyone across the board that I've ever met agrees, that the "R" word is off limits. Bad word. But while I've never used the word, I'll admit that back in the day I made my share of "short bus" jokes and am ashamed. So I can't throw stones. But I can let people know here that the "R" word is a bad word.)

I'm not writing this to get people up in arms. I'm venting. Forgive me. This is just my opinion. But I become quite frustrated sometimes because it seems there are so many "guidelines" one has to follow to make sure to never offend. I read today where a mom said she didn't like the word "disability". I've heard of people who would rather describe a person as "differently abled," as opposed to "disabled". I'll probably screw that up. And more than that (because I realize that some of these guidelines are important) I become frustrated in the way people react when they disagree with how something is said. My point I guess, is that we get so carried away with what is acceptable and what isn't, even with the best of intentions, that the main thing that this has accomplished with me is that I now hesitate to get involved in the down syndrome community (or is that "the community of people who happen to have down syndrome"?). I fear that I will put my foot in my mouth or else become humiliated in public when I am scolded for ticking someone off when I accidentally use a word that they don't approve of.

But now I'm done. And for Alexis's sake, I'll suck it up because being involved is what's best for her. But if I ever meet you in the future and accidentally let a word or phrase slip that you don't approve of, please know that once it slips, I will probably be fully aware of my goof and embarrassed enough without anyone pointing it out.

Saturday, November 28, 2009

A milestone!

I try not to compare Alexis to other babies. I see babies younger than her, both those with and without Down Syndrome, who can roll over or sit up, and I tell myself that every baby is different. And I also remind myself that even though she's 7 months old, because she was in the hospital for over 2 months, PT and OT expect her to be at the level of a baby 2 months younger. But I can't help it. I hear of a baby that's younger and doing all these things that Lexi can't yet do, and I wince. Just a bit, but I do.

But then, the day before Thanksgiving, she rolled over. Jason was with her so wouldn't you know, I missed it. But she did it. She was on her stomach and rolled on to her back. And she did it more than once. Hallelujah!!!!! Today she finally did it for me. Twice. And you can tell she wants to flip the other way as well. It's amazing how much more those milestones mean with Alexis.

And please know, that while I wish for her to reach these milestones, and become overjoyed when she does, I still appreciate every day that's she's a baby. I love her tiny features, her full cheeks, her funny baby laugh. This is our last baby. I'm enjoying every moment of it.

Wednesday, November 25, 2009

A year later...

It was exactly one year ago that we received the call..."your baby does have Down Syndrome..." Hard to believe it's been a year. In one year we've been through one child birth, 67 days in the NICU, 6 days in the pediatric hospital, 2 surgeries and more doctor visits and therapy sessions than I can count...

But I look at her now and see nothing but a happy, healthy, beautiful baby. What a blessing.

Last Thanksgiving I walked around in a bit of a fog. This much to be thankful for:

3 beautiful children,
a supportive husband who is the best dad in the world (except for my own, of course),
a loving family,
dear friends,
a roof over my head and food in the pantry,
a free country,
abundant love, humor, and joy every day.

Thank you God. I am so blessed.

Monday, November 16, 2009

No we do NOT have the croup...

I called the doctor on Friday. Alexis had been coughing and stuffy for a few days. She had a temperature a few days prior that hit 101 but it quickly lowered and remained in the 99's. Amazingly during all of this, she seemed as happy as ever. She was continuing to eat and pee and poop just as like ususal. But Friday she woke up sounding hoarse and a bit "rattley". The nurse told us to come in, just to be cautious.

Alexis weighed in at 14 lbs and no longer had a temperature. Dr. Miller listened to her but said her lungs were fine. She checked her ears and had to remove some wax from one. Dr. Miller thought she was fine. Just a cold. But she told us to watch her and to call in should her temperature rise to 101 or higher. If that were to happen, Dr. Miller guessed it would be an ear infection. I also found it interesting that should we need medical care over the weekend, that she suggested we go to Riverview Hospital as opposed to one of the Med Check types of places. Good to know...

If this had been one of the boys, I probably wouldn't have thought twice about it. But of course I'm extra cautious with Alexis after all she's been through. And I can't help but wonder how much pain or discomfort she would have to be in before she would start acting fussy or lethargic. After going through 2 major surgeries, what's a puny cold or ear infection???

Alexis was fine all weekend. Still no temp, but she continues to be stuffy and have a bit of a cough. She's hoarse and therefore the cough sounds terrible. I'm so glad I received reassurance from the doctor that she's fine. But you should see the looks of disgust I get from other adults when we're out in public and Alexis coughs this hideous cough that sounds like the croup. It's probably wrong that I find it a bit funny...

Monday, November 9, 2009

Therapy resumes...

Alexis resumed her occupational therapy today. She still receives OT and PT every other week and it's very convenient that both therapists had Mondays at 3 open and can alternate weeks; better for me to remember, better for spacing out therapies for Alexis.

So the OT was immediately impressed at how she'd grown. It's been almost 2 months since they've seen her and it's amazing what 2 months and a heart surgery can do to a baby. The OT was thrilled at how much better she sat up in her Bumbo seat, how much better her head control was, how much stronger she seemed. She started the session with the Bumbo seat and everything went well. When she moved her to her tummy and had her rolling onto her stomach, Alexis got mad quickly. After only a few minutes Alexis was screaming her loudest scream and we stopped the session after a half hour.

Alexis seems to be doing better with eating rice cereal. I've tried some different things and she doesn't spit it out as much now. And she seems to enjoy it more and more. When the spoon is coming towards her, the mouth is wide open.

In other news, Nicholas is reading. Every week he has a new sight word and he amazes me with the words he knows but hasn't officially learned yet at school. He has started bringing home beginning books every week and will read the whole thing to me with hardly any help. It's a big joke in our house when I plead with Nicholas and Blake to stop growing. But they continue to insist they can't stop...they HAVE to get bigger. Sigh.

Tuesday, November 3, 2009

Restrictions are lifted! And happy belated Halloween.

Today is the 6 week mark. It's been 6 weeks since Lexi had her heart surgery. Amazing. It's amazing how much she's changed in 6 short weeks. She's definitely eating more and putting on weight. I think her cheeks have tripled in size since her surgery. Luckily, she is once again sleeping through the night. Today our restrictions were lifted. She can once again lay on her tummy. She seemed happy when I did this. I'll bet she'll be rolling over soon, now that we can do tummy time again. She's resuming her therapies through First Steps on Monday. We can also go back to lifting her up under her arms. For 6 weeks we've had to scoop her up under her bottom and back in order to pick her up. Usually it's not a big deal, but it can be a pain when lifting her out of certain seats or from certain angles. She's been lifted a few times under her arms today and the first few times she seemed fine but this evening she would fuss. I'm hoping she's just not used to it and it was irritating her. Let's hope.

This past weekend was fun. Nicholas turned 6 on Friday so we had a birthday/halloween bash at Paula's on Saturday. All the cousins and a few friends came. It was a fun day, even if it did revolve around Transformers and Bakugon. (Don't ask.) Let me just say, that while I don't usually do first birthday parties for my kids, Lexi will be having a very pink, very girly party in April. No Autobots allowed.