A Little Something Extra

Tuesday, June 30, 2009

The wait is over...

... we're officially moving to Minneapolis. Mark was "offered" a transfer within his company and it makes sense to take it (especially since he would have been given a pink slip if he had turned it down). This position will give him really good experience. Before Micah's arrival, we had planned on Mark taking some sort of position like this. But once we got into the world of numerous medical specialists, county Birth to Three services, private therapy options, school systems and inclusion, private school options for kids with special needs, etc., we decided that it probably wouldn't be a good idea to voluntarily move our family.

It's a great job for Mark. He'll enjoy it and his career will benefit. This is fantastic compared to many alternatives. And we are definitely blessed that he has a job.

That said... I'm more than a bit stressed about moving, especially so quickly (he starts on 8/3). We need to at least narrow down an area of town so that a realtor can start working for us. But we have a lot of due diligence to do as it relates to county and school services that would be available to our little guy. Once we have a general area, then I can attempt to find a preschool (or ten) where I can put Nathan on the wait list.

After that, I can start working on finding seven doctors, four therapists, and a dentist. Oh, and a church. Or maybe that should have a higher status on my list. It's these times that I wish I had a personal copy of Microsoft Project. Some of this stuff is sequential, some can be done in parallel... yes, I'm a geek.

Anyway... if any of you reading this are from the Twin Cities, please chime in and share your experiences and advice. Thanks in advance!

Monday, June 29, 2009

Not Me Monday

I've been reading some friends' Not Me Monday posts for a while now and I've decided to throw my hat in the ring. This blog carnival was started by "MckMama" at My Charming Kids.

I did not get too involved in a conversation that resulted in me not watching my first-born long enough to completely miss an “incident” on a playset (that incident most certainly did not involve him peeing off the side of said playset, but I digress…). And I certainly would not punish my child for something I didn’t witness. I mean, that’s not “fair,” right? And the punishment for said incident absolutely would not have been one whole week without videos. That’s madness, right? I mean, this punishment is supposed to be worse for him than for me. What mother of 3 small children during a week with rain possibilities would consider withdrawing movie privileges? And besides, my child does not watch too many movies anyway, because that would be complete parental laziness.

And since today is our anniversary, I should probably mention that I most certainly would not wait until the night before our anniversary to buy my husband a card (or two or four). I’ve had a year to buy a card, right? Why would anyone wait until the last minute for such an important purchase that requires much thought and contemplation of exactly the right words the card should contain? (I love you, honey… thanks for seven wonderful, insane years)

With Mark on a business trip last week, I did not get lazy with meal preparation for my first-born. There’s nothing really wrong with three bologna and cheese sandwiches in three days, right? I really do care about what goes into his stomach (though the thought of those three sandwiches makes me cringe as I type this).

I did not take Micah to church yesterday without glasses or shoes. We spent good money on those glasses (and the shoes too, but there was only one to be found in the 10 minutes seconds I spent looking for them) and I care too much about his eyesight to let him go hours without them.

I wash bottles, syringes, extension tubing, etc., at least once a day, so I certainly have not gone a whole week without washing nasal syringes (aka booger-suckers). So it really shouldn’t matter that I did not use Matthew’s syringe on Micah’s nose.

And for the somewhat serious finale, I have definitely not stressed at all about Mark’s employer’s current round of layoffs because I “do not worry about tomorrow, because tomorrow will worry about itself. Each day has enough trouble of its own.” (Matthew 6:34)

Thursday, June 25, 2009

NDSC Sacramento

This post is for my fellow DS bloggers...

Have you been to the annual NDSC convention before? Is it at all "doable" for me to attend with Micah? When pondering the question, take into account that Micah isn't walking (but he will likely get bored in a stroller all day), is tube-fed, and naps twice a day (I haven't tried the nap in the stroller, but he does nap in the car when he's tired). It's not possible for the whole family to go. I think I'd need a babysitter during the Friday session (I would love to attend one of the speech sessions that day).

Please comment if you've been or are attending this year. I'm curious to see how many of my friends out there in the blogosphere are going.

Monday, June 22, 2009

Father's Day

Many of you know that I have an all-star husband (see his comments here if you want a glimpse, though you'll have to wade through a bunch of other comments to read his) who is also a fantastic dad. We had a fun Father's Day as we were blessed to spend the afternoon with Mark's parents and his brother.

Micah camped out under the patio table and Nathan eventually decided to join him.

Mark and Nathan, along with Mark's dad and brother, went to the extended family's cabin on Saturday. It was Nathan's first time there. Please do not think "resort" when developing a picture in your mind. It's a very small island on a rather small lake (in which you cannot fish or swim) and the cabin has been in the family for five generations. There is no plumbing or electricity. Have you come to an understanding of why you haven't seen blogged photos of us there? :-) Anyway, the guys had a blast and Nathan was a really good kid the whole time he was there (of course... I wasn't there).
(note the misaligned teeth)

I cannot let Father's Day pass me by without posting some photos for a special dad who is oversees. Our kids have some friends whose daddy is bravely serving our country overseas this year. Simeon, Malachi, and Elliana came over for a playdate a couple of weeks ago. Aren't they adorable? Please pray for their daddy, Josiah. Check out Malachi's t-shirt. How cool!
this is a freebie:

Saturday, June 20, 2009

Prenatal testing lawsuit

Anyone care to weigh in on this one?

Slippery slope, I think.

I'll comment more after I hear from some of you, but one issue I'd like to raise... they're seeking "$14 million to cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter..."
We're in deep yogurt if that's truly the amount. Anyone want to buy some used boy clothes and baby gear?

Monday, June 15, 2009

Addressing a comment

I've been drafting this post for a few days. I was really hoping to not feel the need to post it. However, I fear that if I don't address a comment on my last post, I will possibly refrain from sharing difficult information in the future. If you haven't read the comment thread from my last post, then feel free to ignore this post.

First, let me say that one thing the commenter said is absolutely true: there are many worse things that we could have gone through. I have no idea about what it's like to have a child go through a transplant (or two). I felt that quite strongly while in the hospital with Micah 2 weeks after his heart surgery when he was in the step-down unit in a room next door to a transplant patient. We never even saw the family, but I said a prayer every time I walked by the room. I hate that any family has to go through that because it must be very difficult. Yes, there are many worse things that we could have gone through. We haven't watched our child go through a battle with cancer and lose the battle. We haven't witnessed our child get hit by a car and die in our own driveway. And there are many other things people far braver than I have come through.

I have a friend who is currently awaiting the birth of her child who has Trisomy 18. She is both finalizing a birth plan and setting up funeral arrangements. I have no idea how hard that must be for her. Does she find my posts to be "whiny?" I'm pretty sure she doesn't. I have another friend whose son has been through more surgeries than can be counted on two hands and he's not yet two. Does she think I'm playing a victim? No. In fact, she wishes she could say out loud some of what I say in my blog but feels she can't because some of her husband's clients read her site.

On the other end of the spectrum, I most certainly would not expect a friend to not complain or worry about something their child is going through because it's "less severe" than what we are going through (or have gone through) with Micah. I would never condemn someone for expressing how hard it is on their family to have a child in the hospital with pneumonia. That's because IT IS HARD. And if someone asks me to pray for their child who has an ear infection, then I'm going to pray for that child and the family (it's no fun being sick or having a sick child). And I definitely wouldn't attempt to minimize what someone else is going through to make myself feel more like a martyr.

The commenter said, "But to go on line and search out sympathy, looking for people to feel sorry for you is disgusting." - I haven't searched out anyone. I've published my URL to my family and friends, as well as my online support community. This blog was set up to begin to chronicle our journey with Micah. It was a lot easier to explain what was going on with us by writing it here. That way, the telephone game wouldn't creep in and cause miscommunication. My "readers" began with my friends and family who knew me best, so that they would know how best to pray for our family. I share our ups and downs (no pun intended). I'm not here to seek sympathy, rather to be understood. And this is therapeutic for me. It helps me to write it out. It works for me. Just because it doesn't work for someone else doesn't give that person the right to judge me for how I deal with what is going on in my life.

I'm happy for anyone who can deal with their child's challenges without complaint, as long as you're truly dealing with it in a healthy manner. Maybe cutting down someone else (aka me) for not dealing with things the way you do is part of your means of coping. Seriously, though, I do admire you if you never have days that you say, "This stinks." You're in the minority. There are some women on my online community who never struggled with having a child with a disability. But based on my communications within that community, I believe they're in the minority. And to the best of my knowledge, they don't judge the rest of us for expressing our concerns and fears. And if they do, they keep it to themselves rather than reminding the rest of us that they're better than us.

If anything, I hope that there are some parents who see that they're not alone in the fears and concerns they have, especially parents who are new to the Down syndrome thing. Those first days/weeks/months can be very dark days and I hope to have at least encouraged someone along the way to know that there are others out here who have walked the road and felt that darkness and come through it. Some will say that, "God doesn't give you more than you can handle," or "God must think you're pretty special to give you such a special kid." I disagree with both of those statements. I believe that God will allow challenges to come into my life to cause me to rely on Him more. Some will say, "I don't know how you do what you do." To them I would say that as a parent, you do what you have to do. You do what God has called you to do. My journey is different from everyone else's because it was hand-scripted for me.

And as long as I'm responding, I might as well take the opportunity to educate. The commenter said, "I know Micah is happy - most DS kids/adults are." Please take the stereotype away because you really shouldn't classify someone's demeanor based on a medical diagnosis... Micah can be as ornery as any other 17mo old, he's just especially cute doing it. And please don't say "DS kids/adults." Please use people-first language. Micah is a baby with Down syndrome, not a Down syndrome baby. Think of it like someone referring to a child with leukemia as someone's "leukemia kid." That doesn't sound quite right, does it?

I do understand that there have been some posts on my blog that have been "glass is half empty." Yes, that's part of my personality sometimes, I'm afraid. What's hilarious to me is that the commenter chose the last post to claim that I was seeking sympathy. Really, it was mostly a factual post, not a "woe is me" post. But I've had some of those too. If you'd like to rip on me for a "woe is me" post, you could have found a more appropriate post.

Your judgment of me based on having children later in life is terrible. I know many women who have children with Down syndrome who are in their 20's. And Micah's diagnosis of Down syndrome does not mean that he would necessarily have all the health issues that he has. He's definitely on the extreme end of medical issues associated with Down syndrome. And what is your definition of having a high chance of issues with a later in life pregnancy? Is 1% high?

But seriously, I'm concerned that you're not being honest with yourself about your grief over what your child is going through. I'm concerned about the anger you expressed in your comment. You're correct in that what we're going through is not the worst thing imaginable. But there are others who have come to my blog and not felt the need to put me down. So I urge you to discover the root of your anger at my blog. And take that anger to God, because He can handle it.

Now, on to the reason I wrote this post. In the interest of being open and honest, I need to tell everyone why I went a few months without really sharing much about Micah. Part of that has been that I'm just plain tired from being mommy to a newborn and two others. But during this time of Matthew newborn stage, we also went through our annual assessments of Micah's progress and those were very hard for me. Yes, he's making progress. But it's really hard to see numbers put on paper (he's 7 months in gross motor skills, etc.). And the reality is that he's very weak. He will not be walking when he's two. And it won't be because he's just stubborn and won't walk. It's because he can't. He still won't put weight on his legs without a ton of encouragement while holding him firmly under his shoulders, and even then it only lasts a few seconds. Maybe if I keep telling myself that he won't be walking on his second birthday then I won't care on his second birthday. His social awareness was his most advanced skill set, though, at 11 months, I think. For those of you who have met him, that likely doesn't come as a surprise. This child will do anything to make you smile and interact with him.

And last week Micah did his first sign. He signed "more." It was so great! Most kids learn their first signs related to food, and since Micah doesn't eat, I figured it would be a while before he signed anything. But he figured out "more" because his therapists and I sign it to him. He loves to bounce when I'm holding him. After I bounced him one day last week, he tried to bounce himself. I asked him if he wanted more bouncing and he signed "more." I scared him with my excitement!

Speaking of scaring him... I have a question for those of you with kids who have Ds and/or a feeding tube. Does your child have auditory sensory issues? Can anything be done about it? Micah is getting more and more irritated when presented with loud or unusual sounds.

Anyway... that's all the news that's fit to print. I'll post some new photos of the boys soon. I took some cute ones of the Chubby Bubby today.

Tuesday, June 9, 2009

Anesthesia study


This article explains some recent research showing that children who have gone under general anesthesia are at greater risk for developing learning disabilities. The study showed no higher risk for children who have had one surgery. For two surgeries, the kids were 1.5 times more likely to develop a learning disability. But for three surgeries, the risk went up to 2.5 times. And if they had more than three surgeries? 50% chance of developing a learning disability.

I only briefly scanned the article the first time I read it. And I must confess to issuing an expletive. My mind was eased a bit after truly reading it again later and found that there was no mention that they took out children who were already known to have a proclivity toward learning disabilities. So maybe that means that Micah will not be any worse off having been under general anesthesia SIX TIMES before his first birthday. There's nothing here that shows that they took into consideration that spending that much time in the hospital alone could have contributed to the delays. And yes, Micah is developmentally delayed. He likely would have been even without the anesthesia. Will I ever know if he's more delayed due to the anesthesia? No. But I do have a pretty good idea that laying on his back in a hospital bed for 3.5 months of his first year certainly didn't help.

But if presented an option for getting his tonsils/adenoid removed or placing ear tubes, I can tell you this: I will consider this data before making a decision.

On a separate note... Micah had gone a whole month without puking until today when he issued a warm welcome to our new student nurse who is helping us this summer while Melissa is working at her internship. We certainly hope Whitney comes back. But after 11 hours with us today, I'm not so sure that I'd blame her for not wanting to come back. It was a long day. And Matthew is sick too, which is likely the cause of him being completely inconsolable for almost 2 hours tonight before crashing from exhaustion.

Oh, and I haven't yet shared about Nathan's busted teeth. Yes, the front of his face met with a falling chair (that he was on) and his front two top teeth jammed into his top lip (resulting in a one-inch gash on the inside). And those two teeth jammed up and back. Our kind dentist looked at his teeth that night (last week Tuesday) at his house. At the time, the teeth were not hitting his bottom teeth. That has changed. One tooth has gone back almost to where it should be. But the other tooth went farther back and is now hitting his bottom teeth when he bites. It appears at first glance as if he has lost a tooth. We went to see the dentist on Monday and he tells us he's never seen it move that much more, days after the accident (leave it to Nathan). The only fix is to put him in a retainer for a month but we can't do that until late summer after the teeth settle more. So my 3yr old will be starting pre-school in the fall with a retainer. Never thought I'd say that.

Quick new Nathanisms, then I'm off to bed to prepare for the long night of Matthew waking up often, only to not eat enough to satisfy before he wakes up uncomfortable again.

At the breakfast table on Saturday: "Daddy, your tummy is getting bigger."
Sunday conversation: "Daddy, why were you running?" "Because my tummy is getting bigger?" "See, I told you that!"

This morning, chaos was happening downstairs (Micah's pump was beeping loudly at me and Matthew was crying for food). Nathan then bounded down the stairs, causing me to say, "Insanity reigns!" which caused Nathan to ask, "Is it raining?"

Sunday, June 7, 2009

Matthew - 4 months

Matthew (aka Piggy, Cheeks, or Chubby Bubby) turned 4 months last week. At his 4mo checkup on Friday we gained the following information:
Weight: 16lb, 14oz - 85th %ile
Height: 25.25in - 62nd %ile
Head: 43cm - 70th %ile
And he was 4 weeks early! I feel badly talking about how big he is when I know others out there are struggling with their child's weight issues. But please trust me... I've been there too. I certainly don't miss the days of Micah being weighed twice a week and being told to cram more food into him, whether that be through a bottle or through his feeding tube. So this chubby bubby is a welcome change.

Matthew loves to laugh and smile. But he doesn't like being put down very often. Yep, he's the clingy one. He started off as a laid-back baby, but that was apparently due to the newborn sleepy stage. He has a crazy runny nose this week. I'm thinking teething, because he also goes into inconsolable screaming fits on occasion.

First time in the exersaucer
Love this outfit! But he's about to pop a button!Nathan wore the same shirt to Brooke and Taylor's first birthday party in 2006 (I don't have a pic of Nathan with the girls, but here's a pic of the girls separately, and one of Nathan in the exersaucer after we came home, which was also his first time in the exersaucer)

So... do you think Matthew looks like Nathan? Or not so much?