A Little Something Extra

Sunday, August 31, 2008

Micah health update

As I mentioned in the last post, Micah has graduated from home health. No longer will a nurse come to the house to check him over. I know it’s a good thing. It means Micah is considered healthy. But I’ll miss that safety net. Oh, and his weight during his last visit from Melissa was 15 pounds, 3 ounces.

Micah pulled out his feeding tube on Friday evening, resulting in a trip to the ER. It seems the balloon (which keeps the tube in the correct place in his stomach) has a slow leak so we’ll have to get a new one. That likely means a trip to Milwaukee sometime this week. We’ll know more after we talk to someone in GI on Tuesday.

Micah saw an ophthalmologist for the first time recently. He has strabismus (crossed eyes) and it will likely require surgery in the next year. The dr. told us that if Micah needs another surgery before then for something else, they could likely do his eye surgery during the same trip to the OR. We might get our two-for-one after all, because Micah will need at least one more surgery this year for an undescended testicle.

Many of you have asked about his eating. The answer is that he doesn’t. He takes nothing by mouth. We’re putting about 2 ounces of formula a day into his G-tube now (as compared to everything else going into his J-tube). We will try to increase that by an ounce a week. He gets a little puky when he gets those two ounces in succession, so I don’t know how long we’ll be able to continue to push him before we reach his threshold. It would be wonderful if we didn’t hit a threshold. If he could take the whole volume into his G-tube (stomach) instead of his J-tube (jejunum… small bowel), that would mean that his duodenum is functioning “normally” and he wouldn’t need any additional surgery. So if you feel led, that’s a great thing for which to pray.

Micah has physical therapy and speech therapy every week, and he has occupational therapy every other week. Of those areas, he seems to be functioning closest to his age in occupational therapy. We’re focusing on him using his left hand (with the short fingers) as much as his right hand. He holds onto toys for a while and flings his arms to hear the rattle sounds. From a speech perspective, he vocalizes a decent amount, but there’s still no consonants coming out. He does still allow me to mess around with his mouth and cheeks. That’s a good thing, especially considering his oral aversion. We’re now introducing tastes… just a bit of something on a fingertip into his mouth. He likes pear juice and banana. Physical therapy is getting better. He tolerates a decent amount of tummy time now and will roll to his right onto his tummy. He’s doing much better in his Bumbo seat too. His arms are still quite weak.

As I mentioned earlier, Micah has broken 15 pounds. His weight gain has slowed down. For a few weeks he was growing at a pace of an ounce a day. He’s now down to about ½ ounce, which is just fine for his age. But his feet are especially tiny. They’re about the same size as Nathan’s were when he was born! He’s not yet in a size 1 shoe. So, it looks like the 0-6month Robeez we received from some friends will actually be put to good use this fall.

Thank you for continuing to pray for our sweet little guy.
(If you haven't checked the blog for a while, see below for some new photos, as well as an announcement)

Saturday, August 30, 2008

Photo time

We went on vacation earlier this month with Mark’s parents and we had a great time. Both boys had a difficult time learning to sleep in a new location. But they both slept straight through the last night we were there. :-)

Nothing makes Nathan happier than playing in the sand

Daddy and MicahMark was able to go waterskiing a few times and did great!

Me 'n my baby

Hangin' with Pop

Nathan's first fish

Nathan had never seen so much ice cream in front of him

The fam

Sunset from the resort

Last weekend we had the privilege of attending an annual picnic of a local Down syndrome support group. We met a lot of new people and saw some other friends there. Nathan had a blast. There was a DJ who played fun songs for the kids.

Nathan hopping on one foot. This is unedited. Check out his calf muscle! Can you tell he jumps A LOT?!
First time doing the chicken dance
He had so much fun. Could it be because the group was comprised of primarily cute little girls?
Micah’s buddy, Logan, and his mommy, Michelle (Logan is going to be a big brother in about a month)
Group photo

Here are some other photos taken since vacation

Nathan, Gracie, and Nathan
Micah has graduated from home health. It’s a good thing… he’s getting healthy enough to not need his weight, BP, O2 sats, etc., checked every week. But we’ll miss our sweet nurse, Melissa.
Great Uncle Kim came to visit from Georgia
Check me out! I rolled over and pushed up like this all by myself! Oh, and make sure you check out my chunky monkey legs.
Nathan didn’t like Mommy taking so many photos of Micah, so he actually ASKED to have his picture taken (very unusual). Cheeseball!
Umm… maybe it’s time you yahoo’s actually buckle me into this swing

Friday, August 29, 2008

VP candidate

Wow. Quite frankly, I'm surprised she accepted the call, but how amazing that Sarah Palin is running with John McCain. She is (obviously) a woman, a Republican, and incredibly, a mother of five children, including a baby boy with Down syndrome. Here's a video from Glenn Beck's show on CNN Headline News following the birth of Trig.

On a separate political note, I really don't like living in a swing state. I miss the South where we were basically ignored during campaign time, compared to the onslaught of commercials we have experienced and will continue to experience for the next two months.

Monday, August 25, 2008

The big brother

This is sort of a Nathan story. Nathan's best girls in Atlanta, B and T, are now big sisters. Their mom sent me a photo of the girls kissing baby A. I was showing the photo to Nathan, and told him, "Look, buddy, B and T are kissing their new baby sister." Nathan's reply was, "I want a baby sister too." You're going to eat those words someday, pal, hopefully in February (or late January at the earliest). We'll find out in another 7 weeks whether he's getting another brother or whether he's getting a sister. Yes, it's true... almost two months ago I had to look at my then-12-pound Micah and say, "How do you feel about being a big brother?" I'm 13 weeks and all looks good so far, but I'll deliver by c-section at 36 weeks due to a complication I had during delivery of Micah.

So for those of you who are doing the math, Micah will turn one year old on 1/5/09 and this baby will arrive before he hits 13 months old. Some of you know what we've gone through from an infertility perspective, and this should bring a smile to your face (if not full-blown laughter!) just to be reminded that God truly does have a sense of humor: our family has a surprise pregnancy!

Tuesday, August 19, 2008

The movie and the "r" word

I’ve been attempting to organize my thoughts about this subject and it’s not working. So maybe if I just start writing I’ll figure out what I want to say.

There’s been some heated discussion about the movie, Tropic Thunder, with Ben Stiller portraying a character who is an actor who was playing the role of an intellectually challenged man. I, like most of you, appreciate satire/parody/whatever you want to call it. This movie was made, supposedly, to mock the film industry, not the mentally disabled. But here’s the problem with the movie: the word “retard” or “retarded” is used often.

Okay, so it’s all about the satire, right? Stiller isn’t REALLY mocking the disabled, is he? He’s really mocking the film industry. But is that all he’s mocking? The incessant use of the “r” word perpetuates our society’s inappropriate use of the word. How often have you heard someone say, “Don’t be such a retard,” or “Oh, my gosh, I’m so retarded.” The problem is that mental retardation is a true medical diagnosis, and many individuals with that diagnosis are unable to defend themselves from the mocking they receive.

This hurts a bit more these days, given Micah’s diagnosis of Down syndrome. It’s about a 95% certainty that he will have mild to moderate mental retardation. I just cried and cried when I read Patricia Bauer’s story at the beginning of an article she wrote for the Washington Post:

“Margaret and I were lingering in front of the multiplex one evening last summer, a mom and her adult daughter laughing about the movie we'd just seen, when a gaggle of cute pre-teen girls sauntered past.

The one in the lead jerked a thumb in our direction and made a goofy face to her friend. "Look. Retard," we heard her say, and Margaret wilted. Her chin trembled. One by one, the other girls turned to look, nudging one another and whispering. The last girl spun all the way around as she slowly walked by, eyes fixed on my daughter.

In her size 6 jeans and Old Navy shirt, Margaret hadn't done anything to attract that unwanted attention. But then, my blond, blue-eyed daughter lives every day behind a face that can be a lightning rod for such talk. The beautiful face I've loved for 24 years displays some of the characteristic signs of Down syndrome, a chromosomal anomaly associated with varying degrees of cognitive impairment.”

That scenario could happen to my son someday. It probably will. And though I can’t protect my children from ridicule their entire lives, the perpetuation of acceptability of inappropriate use of the word, like being disabled is something one can control, is something I’d like to nip in the bud at all costs (as if I could control it).

So the next time you consider using the “r” word out of context, please think of my sweet little boy and his peers, and realize that they will understand what you’re saying and it will hurt their feelings. And by all means, please don’t buy the unfortunately popular t-shirt from the film which states, “Never go full retard.” Sickening. I won’t be seeing this movie. I think I’d cry listening to others laugh.

Saturday, August 9, 2008

Micah at 7 months

Chunky monkey baby is getting close to 15 pounds! He weighed in on Wednesday at 14lbs 12oz. Micah now blows raspberries with the best of them. This is a great milestone for him, especially since he doesn't use his mouth to eat. The more work he does with his mouth, the better.

Here are some new photos. The next time I update the blog, I hope to have some pictures of Nathan fishing for the first time!

A doe and her two fawn (as viewed from our front door). They started out eating leaves on our maple tree in the back. Grrrr.

I took the boys to the county fair on Friday. Nathan liked the animals fine. He really liked playing with Hudson. But ultimately, he preferred the tractors above all else that morning.
We went to the zoo today for Herma Heart Center Family Day. It was fun to see some of the people who cared for Micah. Nathan loved the zoo (especially the fact that he got to spend time with Uncle Jim and Aunt Jen).

This is what Micah thought of the monkeys.

Check out the lion right behind the glass.

Floating polar bear

Family photo

Saturday, August 2, 2008

Buddy Walk

We're planning to go to Green Bay on September 6th to walk in the annual Buddy Walk for Down syndrome awareness. We're really looking forward to meeting Erin and seeing Micah's friends, Logan and Ruby.

We've chosen to dedicate funds raised to DSFN (Down Syndrome Family Network, through the ARC - Fox Cities), our local networking group. It's been a great way for us to meet other local families who have children with Down syndrome. And they provide information to local hospitals to give to families whose babies receive a pre-natal or neonatal diagnosis of Down syndrome. The information I received when we heard about Micah's diagnosis was very helpful. I'd love to add a book called Gifts to all the packets. Micah is most definitely a gift and we hope that other families will understand that more clearly through his life.

If you'd like to donate to the cause, please click the link in the top left of this page. If you live locally and would like to walk with us, drop me an email. Thanks for your support!