Oh, joy. Micah has what appears to be a staph infection. Let me lay down the history. It started overnight Saturday. He moaned all.night.long. He seemed okay Sunday morning, though, so we headed to church (to say the roads were icy would be an understatement!). Micah started wretching with his lunch. Here we go...
Sick puppy Sunday evening. Another night of moaning. Fever of 101 when not on tylenol. Off to the pediatrician on Monday morning because I was a bit concerned. Micah's regular ped was out that day, so we saw Dr. M. Micah's g-tube site was a bit red, but nothing outlandish. Ears fine. But his throat? Not so much (red spots... looked like strep). Labs run... CBC within normal range, but looking like he might be fighting some sort of bacterial infection. Strangely, the strep culture came back negative. I tried to hydrate him with pedialite through his g-tube all day, but we were definitely "behind on fluids." His stoma site started leaking mid-afternoon. Basically, when I pushed fluids in, some of it was leaking around his tube site. Bad memory of that one (remember April, anyone?). So, off to the ER for IV fluids.
ER doc (who trained at Children's of WI, just like Dr. H who saved Micah's life in the ER and PICU back in April) ordered x-rays to see if there was something wrong with his tube placement (side note: I so wish I had brought the x-ray orders for Micah's spine x-rays to check for AAI... it would have been fairly easy to get those done during this trip because he was so wiped out he didn't challenge anything in radiology). Doc also ordered the IV fluids and ran blood cultures (didn't hear anything back from that... I'll check on those on Friday). I expressed concern over the challenge of getting an IV into Micah (his last overnight stay at the end of September resulted in him actually not getting an IV because they couldn't get a vein). Micah's nurse called in an experienced pro, Lois, and she got a line into him on the first shot (it wouldn't have worked with a mobile kid... she put it in the top of his foot... but hey, whatever works).
We were out of there in about five hours, which I guess isn't bad, but it's still draining. Micah slept most of the night, only waking once, which is better sleep than he often gets when he's healthy! We pushed him through yesterday, trying to stay on target with fluids.
All day yesterday I had noticed that when I looked directly down on mic-key button, it appeared that there was brown stuff inside his stomach. So Mark and I decided to take out his button, clean it off a bit, and put it back in. The button was fairly new (I changed it out a couple of weeks ago) and I hadn't ordered a new spare yet so we couldn't change it out, but we wanted to see what was going on. Probably TMI here, but brownish goo oozed out when we took out the button. Rut ro.
Called the pediatrician this morning and mentioned the brown goo and that the inside corner of his right eye was red. Quick trip to the pediatrician turned a bit longer than expected. For one thing, there was a 2nd year med student with her (it's the second time I've met a medical student who was shadowing her... I love that she does this... and I especially appreciated her telling the medical student that Micah's medical issues were not the norm with Down syndrome). She was planning to look at his g-tube site after checking his ears. While looking at his ears, she noticed that he had a little rash with white bumps above his left ear. I had seen it the day before, but I figured it was his skin reacting to the haircut he had gotten on Saturday. As soon as she saw that little area above his ear, she proclaimed, "That's staph." She said that explained the eye thing, the little red bump on his cheek, and the goo around the tube site. I also told her that he was sporting a red rash on his belly when we were in the ER on Monday. The look on her face was almost horror. Or was it disgust that the ER doc didn't do more investigating?
Quick finger prick showed an elevated white count. So, before we left the pediatrician, the nurses made a solid effort to get blood drawn for a culture. No way, no how. They asked Dr. B how to proceed. Ultimately, it made the most sense to get rocephin (an antibiotic) on board, so he got a shot. Tomorrow he starts two weeks of augmentin. She cultured around his tube site, so we're hoping that comes back and shows us exactly what we're dealing with. Please pray that it's not MRSA (the antibiotic-resistant form of staph). That would require a sulfa-based antibiotic and I'm terribly allergic to those, as is my father, and I'd rather not experiment with Micah's ability to tolerate those drugs. Likely port of entry for this round of staph is his g-tube site (stoma). This is a great example of my love-hate relationship with his feeding tube. Glad it exists... keeps him alive. But then this junk happens.
Micah has a LOT of sinus drainage going on (which was the other reason she chose augmentin because that would fight a sinus infection). I think his tonsils (that obstruct 80% of his airway) make dealing with sinus drainage super uncomfortable for Micah. He's been drooling all day (I think his throat hurts). And he's woken a lot already this evening, primarily due to the sinus stuff, I think. This drainage is an even bigger problem for him, as his swallow reflex is still being developed.
We had been planning on a long drive to our family farms in SE Missouri this week. We miss my family very much, but we're very thankful that Micah got sick BEFORE we left and not while we were down there. We would have been over 3 hours from St. Louis Children's.
Sorry to bore you with all the medical stuff. I'm sure that Micah's immunologist is going to ask me all about this and it's very helpful for me to be able to just point her here rather than me trying to remember all this when we see her in March.
Happy Thanksgiving, everyone. We have much for which to give thanks.
Did you hear about the snow in the Twin Cities yesterday? We officially got 11 inches and it was super wet (and it melted a bit today, but it will not melt anymore this week, I hear). This first photo was taken from our front door.
I had a retreat at church on Saturday for moms of kids with special needs. No, they don't cancel stuff up here for a snowfall like this! It was a great day at the church. Mark told me before I left that he was going to try taking the boys' Christmas photo in the backyard while it was snowing (aka, he wasn't going to wait for me to come home). Hm. Okay. Have fun with that. He texted me at noon and called it the "Bah Humbug" photo shoot.
So... Matthew was not excited by the snow AT ALL.
And then a branch above them dropped a bit of snow on their heads.
Micah was getting pretty mad by this point.
Small success in getting Matthew to stop crying
But it didn't last long
The wind is picking up and snow is falling in faces
And finally, Nathan screams, "It's COLD!!!"
Are you waiting for me to share the perfect shot? Ha! We'll let you know when we attempt this project again. Though I confess I'm considering using one of the above shots for the Christmas card. :-)
I read about this promotion from Rebecca at The Bates Motel blog..... 50 FREE Holiday Cards from Shutterfly!
Free? Excellent! Are you a blogger? Follow the arrow to get 50 free holiday cards from Shutterfly: -------> http://bit.ly/sfly2010 Mark and I have lived in way too many places since we met. And we grew up in different places and we went to different colleges. So our Christmas card list is a bit long. We usually do a photo card. The past couple of years I've used Vistaprint because I like making our card myself. One of the reasons is that I just haven't found a card that I like. Personally, I like Christmas cards that allow me to express my faith. Right or wrong, I don't worry about offending someone who may not celebrate Christmas.
But true "Christmas" cards that are classy are more difficult to find than "holiday" cards that are classy. Shutterfly actually has a link to Religious Christmas Cards and I found some I like. I'm still undecided on my favorite. Maybe this one. It sort of makes me laugh, though, because the actual verse (from James 1:17) says, "Every good and perfect gift." Good thing it doesn't say "perfect" on the card or I wouldn't be able to use it for our family photos. :-) I really like this one, but I don't anticipate getting a portrait photo of all 3 boys (I'm hoping for a landscape photo that looks decent).
I also like this one. But Shutterfly has some fantastic choices for "happy holidays" as well as "merry Christmas" (that don't fall under the "religious" category). If I wasn't going for the "religious" tone, I think this one would be my choice. I really like how you can personalize the front of the card to give brief updates on the kids (how convenient that there are three ornaments). Ultimately, the card choice could be made for me depending on whether we get a good photo of all three boys together or whether I need to use separate photos of each boy (the more likely scenario). Best case scenario: I get all of the above and can get this card.
Most of those choices assume I'm going "cheap" and not getting the folded card. But I love that Shutterfly allows you the opportunity to insert photos on the INSIDE of their photo cards as well as on the outside. So now that I'm looking at all of THOSE cards, I find this one. How fun! Four extra spots for photos on the inside. That would help me a lot as I always have a difficult time choosing photos.
Well, now I just need to get our photo session scheduled. I'd love to use the "stamp and mail for me" option, but it's a bit pricey when I consider how many cards we send out. And I have a five-year-old who can apply stickers like the best of them!
It's November 7th, Orphan Sunday. In Eastern Europe, there's a special little boy named Dmitri who will be three years old this month. He's only two months older than Micah. He happens to have Down syndrome. Where he lives, it's perfectly acceptable for him to be abandoned at birth because he is "disabled." He has no mommy or daddy to kiss him good night, just because he has an extra chromosome.
Micah would not have survived a week if he had been born there.
If Dmitri is not adopted before he turns five years old, he will be sent to a mental institution where he will spend the rest of his days without anyone reading him a book or teaching him to count. Do you wonder what those institutions are like? Julia and her family recently adopted Aaron after reading about him on Reece's Rainbow. Yesterday she blogged a bit about her experience there (have tissues on hand when you read her account... it's horrifying).
Our family decided a few years ago that we don't need to keep buying toys, etc., for the cousins. We give money to charities instead. Would you consider helping Dmitri find his forever family by donating to his grant fund? We can ALL help orphans, even if we don't adopt them ourselves. Dmitri's family is out there somewhere. And we could help them bring him home. An adoption from his country is one of the most expensive international adoptions.
There are children who have come home to the U.S. because their forever family didn't have to bear the full cost burden of their adoption, thanks to people like you (and me).
Please help us save Dmitri. I look at his sweet crossed eyes and I think of Micah, who has been blessed with early intervention for his strabismus. I long to see a photo of Dmitri smiling with a family. I just KNOW he'd give the best snuggles a family could ever dream to experience.
Grants from Reece's Rainbow have helped over 350 orphans with special needs come home in the past four years. They make it easy for you to help. And for every $35 you donate, you can get an ornament that has the Reece's Rainbow logo on one side and Dmitri's photo on the other side.
Here it is. The last post of the month. I made it through the challenge! I blogged 31 straight days: some about Down syndrome, some not. Maybe some of my readers don't remember why this started. So here's a reminder: There are 31 days in the month of October. October is Down syndrome awareness month. Down syndrome is caused by an extra copy of the 21st chromosome. So... I blogged 31 days for the extra 21st chromosome that is present in every cell in my son's body.
A campaign done by NDSC (National Down Syndrome Congress) this past year was called "More Alike Than Different." Micah lived that tonight. He had a BLAST trick-or-treating. He was not content to be held and watch his brothers conquer the steps to people's houses. He was struggling to get out of Mark's arms at one point. We both thought he just wanted to go to me. But it wasn't the case. He wanted DOWN and he wanted to stand by the door with Matthew and Nathan. That was HUGE for him. And we all know he couldn't have cared less about the candy, of course. And he didn't hate wearing his costume (sure, he pulled the hood back a lot, but he never cried about it).
On a separate note... Matthew was a trick-or-treating rock star. This little guy has the strongest personality. He was determined to walk the whole route, just like Nathan. He had no idea what he was collecting in his plastic pumpkin (as he's never really had candy), but he loves to walk around the house with any sort of basket and collect things, so this trick-or-treating thing was right up his alley.
Here ends 31 for 21. There were a few questions asked which I did not have time to address this month. I'll work on those in November. And please do let me know if you have any other questions for me!
Wahoo!!! The founder of Reece's Rainbow was recently named People Magazine Reader's Choice Hero of the Year.
This post is definitely for my readers who don't have a child with Down syndrome. Why? Because if you're "in the club," I'd be surprised if you haven't heard of Reece's Rainbow.
Andrea Roberts founded this super special organization that has found homes for almost 300 children whose parents abandoned them because they have an extra chromosome. What I find most incredible is that you can help to sponsor a child by contributing to that child's adoption fund. So even if your family doesn't feel called to adopt one of these children, you can financially help someone else bring that child home.
I blogged a bit yesterday about why this is so important. In certain countries, these children don't live much past their preschool years as they are usually sent to an institution at age 5 and die before they can grow up. These adoptive families are saving these children from certain early death.
No, Michelle Z, I'm not trying to tell you what you think I'm trying to tell you, LOL. But I'm considering becoming a Christmas warrior. I'll let you know early next week.
This post is a long time coming. And there's way more on my mind than I can share in one blog post, but I need to start *somewhere*.
I have multiple Facebook and blogging friends who have adopted or are currently in the process of adopting a child (or multiple children!) who has Down syndrome. In the countries where these children are born, it is perfectly acceptable to leave a child who is differently-abled at the hospital (or worse). When children with Down syndrome are born in some countries in Eastern Europe, those children have little if any hope of life past the toddler years if they are not adopted. Why? Because in those countries, a child with Down syndrome is sentenced to life in an institution if not adopted by age 5. At age 5 these children are basically confined to life in a crib with no education or love.
Some of the families who have announced that they are adopting a child with Down syndrome have received CRAZY criticism from others here in the States. Such criticism includes: "Aren't you busy enough with the challenges of your 'own' children?" and "Why put such a burden on ALL of us in the U.S. with those children who will grow to be adults and drain our country of resources?" "There are plenty of children here in the U.S. who need families... why not adopt THEM?"
I'm not going to answer those questions. Because those are PERSONAL questions. Questions that each adoptive family must struggle through and answer within their family. The decision to adopt is HUGE, whether that be domestically or internationally, newborn or older child, "special needs" or not.
Michael Gerson wrote a column about adoption in the Washington Post this summer (the column has nothing to do with "special needs" adoption, but I found many of his points to be wonderful). One of the most profound statements he made was, "It is one of the noblest things about America that we care for children of other lands who have been cast aside." Here's the column: http://www.washingtonpost.com/wp-dyn/content/article/2010/08/26/AR2010082605232.html
So, back to the adoption of children with Down syndrome. Did you know that there's a list of some 200 families in the U.S. who are interested in adopting a baby with Down syndrome? That probably sounds crazy to those of you who don't have a child with Down syndrome. But for those of you who truly know our family, hasn't Micah's life blessed you already? He's not even three years old. He has certainly changed ME. There is no small accomplishment with Micah, no "milestone" that goes ignored.
So who will take care of the "least of these?" (Matthew 25:40)
I have to confess... when I was expecting Micah, I was really looking forward to him having beautiful blue eyes like Nathan's. And maybe even more beautiful, because many kiddos with Down syndrome have Brushfield spots (small white or grayish spots in the iris).
But Micah doesn't have blue eyes like his brothers. And he doesn't have brown hair like them (though his blonde is getting darker). I've seen so many kids with Down syndrome who look a lot like their siblings. But Micah isn't one of them. That sort of makes me sad. Well, maybe what makes me sad is that he doesn't look like his brothers because he doesn't look like his father.
Yes, that's me. And lest you be tempted to think that's a halo around my head (LOL), um no... that would be the peach fuzz that grew in on my head after the dark brown hair that covered my head when I was born fell out (much to my mother's chagrin, as there was NOTHING she could do with it for the first two years of my life).
On a separate note... MICAH TOOK HIS FIRST INDEPENDENT STEP TODAY!!!
I received a call from Micah's immunologist today (yes, we have another specialist on our list after the April experience). She was very encouraged by Micah's improvement in his pneumoccocal titers. Right. Like you understand what THAT means.
Micah had some labs drawn in July. There were a few abnormalities found. The most critical, in the doctor's mind, was that his pneumoccocal titers were low. Basically, that means that his ability to fight off a streptococcal bacteria was limited (when Micah was so sick back in April, labs ended up showing not just staph, but also strep). On the standard vaccination list is a series of shots called Prevnar (I think it's four of the ridiculous number of vaccination shots our kids get before they're 18 months old... and no, I don't want to get into a vaccination debate today).
So Micah ended up getting a "bigger gun" vaccination (Pneumovax) after that. He was supposed to get bloodwork done six weeks after that, but he was sick at that time so we delayed a bit. Anyway, his titers improved significantly so she feels good about not seeing Micah until March or April.
The other issue that continues to present itself is that Micah has a low level of B-cells. In a nutshell, it means he's low on antibodies needed to fight off infection. His doctor will check it again the next time we see her. But there's really nothing that can be done about it. It could be a Micah thing. It could be a Down syndrome thing. It could be a lingering effect of how hard his body had to work back in April.
Anyway... I'm just glad that the Pneumovax worked, or we might have been looking at IVIg transfusions on a long-term basis.
I'd like to begin by saying, "What a crummy name!" There's power in a name. Imagine what the baseline thinking about our kiddos would be if the guy who identified the syndrome had the last name "Upp."
Think of the diagnosis delivery alone: "I'm sorry, but your baby has Upp syndrome," doesn't sound quite right, does it? Doesn't it sound like it should be delivered in a more encouraging way? I've actually heard several self-advocates (adults with Down syndrome) refer to themselves as having "up syndrome."
Most individuals with Down syndrome whom I've had the pleasure of meeting definitely have more of an "up" attitude than a "down" attitude. This might be part of the stereotype that people think individuals with Down syndrome are always happy. They're not always happy. They experience a full range of emotions just like everyone else. In my opinion, the "happy" stereotype is because they tend to not hold onto negative emotions like so many of us "typicals" do. But that's a subject for another day, perhaps.
Back to the question at hand. My friend, Jenn, asked me to share about the history of Down syndrome.
In 1866, an English doctor, John Langdon Down, first described the condition, which subsequently assumed his name. It took until 1959 for a geneticist, Jerome Lejeune, to discover that the condition is a result of a triplication of the 21st chromosome (aka a trisomy). There are two other rare forms of Down syndrome: mosaicism(2%) and translocation (4%). Mosaicism is when the extra copy of the 21st is not present in every cell, only some of the cells. Translocation is when the extra copy of the 21st chromosome attaches to a different chromosome. Translocation is the only type of Down syndrome that *could* be inherited (though it isn't always).
For a long time, the condition was referred to as "mongoloid," showing the level of ethnic prejudice that existed then. Individuals with Down syndrome were systematically institutionalized until as recently as the 1970's here in the US (it's still happening in other countries... more on that when I do a Reece's Rainbow post).
There are only a few more days left in October. Any other questions you'd like me to address?
We're getting close to Micah's 3rd birthday. Children with Down syndrome should have a few neck x-rays before their 3rd birthday to rule out atlantoaxial instability (AAI). Basically, the low muscle tone and lax ligaments that are present in most individuals with Down syndrome can cause vertebrae to become misaligned. AAI is when the C1 and C2 vertebrae are misaligned.
It's estimated that 10-20% of individuals with Down syndrome have asymptomatic AAI and 1-2% have symptomatic AAI. From what I've read, the asymptomatic isn't a huge deal, though playing contact sports like football would be a questionable decision.
Micah hasn't had these x-rays yet. I have the lab order from Micah's neurodevelopmental pediatrician and she recommended waiting until close to his 3rd birthday as it's easier to get a 3-yr-old to lay still on the x-ray table (um, yeah).
Here are some symptoms of symptomatic AAI:
•Lack of Coordination
•Walking with an abnormal gait (ie limping)
•Getting tired easily
•Nerve pain or limited ability to move the neck
•Spasticity - tightness in the muscles
•Clonus - muscle contractions or spasms
I'm looking forward to getting Micah's x-rays done. We met a sweet little girl in April who was at Children's in Minneapolis from November until July after her vertebrae collapsed and paralyzed her. She's doing great now and is back home in South Dakota.
I'm sitting here watching the Packers game and catching up on a bit of my blog reading and doing the MOPS directory (you can call me the multitasking queen, as I'm also in control of the remote to fast forward through the commercials since we're watching the game on DVR because we had to put the kids to bed).
Anyway... I was just brought to tears when I went to Catherine's blog. Her daughter, Lois (a member of the designer genes club, aka she has Down syndrome), just turned 3 years old a week ago. Lois has leukemia. Initially, it was the high-cure-rate kind and she went into remission. But she relapsed. Her only chance of survival is getting into remission again and then getting a BMT (bone marrow transplant). After each round of chemo, she gets tested to see if she's in remission.
This is Lois:
Lois is not in remission. So she has to go through another round of chemo. Each round is more intense than the previous one. Each one gives a higher chance for the chemo to kill something good in her body, not just what's bad.
Please pray for Lois and her family. No child should have to go through this. And no parent should have to either. But our kids with this extra 21st chromosome have a 10-15 times higher likelihood of getting leukemia than a typical kid. But I'm sure that knowing that doesn't make it any easier when it happens to YOU.
I've discovered a major upside to this 31 for 21 thing... I can look at LAST October and see progress.
We've been gradually adding a bit of wheat germ to Micah's yogurt in an effort to get him more comfortable with textures in his food. He seemed to cross some sort of threshold a few weeks ago and he can now handle a very thick, grainy consistency. So I decided to try Stage 3 foods on him this past week. And what do you know? He's eating it! He doesn't know how to chew, so he's swallowing the small chunks of carrots whole (with the occasional gagging incident). But that's great progress because he used to gag and puke if any sort of texture would hit his tongue.
Micah is doing great with his therapists too. He goes to private feeding twice a week (once with an OT, once with a SLP). We also added private PT at the same clinic a few weeks ago and he immediately responded well to her (that's not a common occurrence for Micah... it usually takes him a long time to warm up to a therapist). The school district has therapists who come to see him at home too: PT, OT, SLP, and DT. Micah seems to be doing a bit better at his private therapy sessions lately. I think that's somewhat related to me not being in the room with him... which might be another good reason for him to start school soon... (more on that later). Back to eating...
Micah will make an attempt at self-feeding occasionally. I think it's time to "force" him into that (give him a spoon and a bowl of yogurt and let him go to town). But I definitely need to be more comfortable with spending time cleaning up after meals, if you catch my drift.
One thing that Micah is NOT doing is drinking. Anything. At least for me. He might take a sip of milk or water, but after that I get a "No!" I think he drinks more for his SLP.
So, just to reminisce, I'll end this blog posting with the same paragraph as last year's post:
One of these days we'll be able to get rid of the feeding tube. It could be a year or two. But it's so wonderful to see progress!
GLOSSARY: SLP - Speech and Language Pathologist OT - Occupational Therapist PT - Physical Therapist DT - Developmental Therapist, aka Special Ed Teacher (are they one and the same? I'm not exactly sure.)
"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world." ~ James 1:27
What does James 1:27 mean to you?
For many of us, it means doing what we can to help another family adopt a child. Not all of us are called to bring another child into our home. But there are some who ARE called.
Here's a photo of a family. Can you tell which ones are biologically "theirs?"
Aren't they beautiful? And just think... they're missing TWO! Yes, two children who currently live in the Ukraine. One, Monroe (aka Wesley) whom they "know" will be coming home this fall. The other... well, I'll let you watch the video to hear about Aleksa.
I met Meredith Cornish at the NDSC convention in Orlando in July. Their family is hard to mistake for anyone else. I introduced myself, as I feel I "know" her through the blogosphere. And I'm a bit biased toward a family that has a little Micah in specs. :-)
Could you do what they have done and continue to do? I don't think I could (though I didn't think I could do all that we've had to do with Micah, either, but I believe that God gives you the strength to handle the trials and challenges He presents to you, as long as you accept HIS strength and don't try to rely on your own strength).
I can't think of words worthy to describe how I admire the Cornish family.
In response to a question from my friend, Lisa... what contributes to the life expectancy of an individual with Down syndrome?
History: 1929 - Life expectancy of an individual with Down syndrome was 9 years Today - 55-60 years
What has caused the increase? Answer: primarily medical care (though I would also like to add that back in 1929, most individuals with Down syndrome were institutionalized, and I'm sure that environment would play a role in someone having a shorter life expectancy)
Specifically, intestinal surgery, heart surgery, infections and leukemia treatment. Approximately 50% of individuals with Down syndrome are born with a CHD (congenital heart defect). Approximately 12% are born with some sort of digestive issue. And children with Down syndrome are 10-15 times more likely to develop leukemia (though their response to treatment, I've heard, is usually better than a "typical" child who develops leukemia). Additionally, children with Down syndrome are 62 times more likely to develop pneumonia. And they are 12 times more likely to die from infectious diseases, if left untreated. They tend to get more ear infections than the general population, primarily due to VERY narrow ear canals.
If he had been born 50 years ago, Micah would have died soon after birth due to his duodenal atresia. And if it hadn't been the intestinal blockage, it would have been his heart defect. He went into heart failure around 5 weeks of age. It was managed through medications up to his surgery at 4 months (he's still on a medication, due to leakage in both his mitral and transcuspid valves... he'll likely be on that medication for life... most kids who have that same repair do not have to stay on a medication and they get cleared by their cardiologists quickly... Micah still sees a cardiologist every 6 months).
Anyway... one huge benefit to the life expectancy increasing is that they have found additional health issues that hadn't been studied in the past. The most major one is that the incidence of Alzheimer's in individuals with Down syndrome is significantly higher than the general population, and its onset is typically earlier. Why is that a benefit? A lot of the current Alzheimer's research is focusing on the 21st chromosome.
So to answer Lisa's question about life expectancy... yes, the lower life expectancy is related to health issues, whether that's intestinal obstruction, cardiac defects, or leukemia in the early years, or Alzheimer's/dementia in the later years. Micah's duodenal atresia won't lower his life expectancy at this point. But he's at a bit higher risk for pulmonary hypertension later in life, I think.
I received a question on Facebook about whether individuals with Down syndrome are able to have children. The simple answer is that women who have Down syndrome are (I believe) as fertile as their "typical" peers. Men with Down syndrome, however, are largely considered to be infertile. There are apparently a few cases where they have fathered children.
Anyone else have Monty Python running through their mind?
(Micah's glasses are next to Nathan's elbow. Said glasses were removed by Matthew. Those same glasses were purposefully snapped in two a couple of days ago by the little boy with low muscle tone and slow development of fine motor skills.)
I had a few friends on Facebook ask some questions about Down syndrome so I'm going to answer them here. One person asked about whether individuals with Down syndrome can have children.
I was planning to address that question tonight, but we have some water in the basement and had to tear out some carpet this evening. I'm not quite up for posting tonight so I'll work on this one tomorrow. Gnite!
Edited to add: Michele, could you please repost your comment from the posting about Micah walking? My cursor moved and I mistakenly deleted it rather than publishing it and now it's gone. :-( As a reminder, you commented to Anonymous about being part of a support group.
My friend, Colleen, asked for more information about Micah's lack of walking (Thanks for asking! It's awareness month, after all, and I'm happy to address any and all questions about Down syndrome or Micah). Yes, that's right. Micah will be three years old in January and he still doesn't walk. He hasn't taken an independent step. But he's starting to pull away and stand by himself, which is progress.
There are four contributing factors to the *general* delay of walking in kiddos with Down syndrome (keep in mind that there is a huge range, just as there is in typically-developing kids, but the mean age is later and thus the range is larger):
(I'd like to add "stubborn" to the list, in direct contradiction to those of you out there who think that children with Down syndrome are always sweet and happy...) :-)
Hypotonia is one of the first indicators of a need for testing when a baby is born without a prenatal diagnosis of Down syndrome. Our kids can be referred to as "floppy" at birth. As they grow, it often takes longer for them to be able to pull their head off your shoulder, push up on their hands while on their tummies, etc.
Physical therapy needs to be viewed long-term. Kids who have hypotonia have great opportunities to "cheat." For example, they can go from tummy to sitting by doing the splits. So, it's important to teach them the proper way to do physical movements that will build their strength rather than just letting them take advantage of their flexibility.
Micah has fabulous posture. I credit that to his early work with his PT in Wisconsin. She didn't let him cheat. She made him work.
When we were in Orlando at the NDSC convention in July, I attended a six-hour seminar with Patricia Winders, PT. And we had the privilege of her evaluating Micah's walking skills while we were there. She's done a lot of work with kids with Down syndrome over the years. Here's an article she wrote back in 2001. There's a bit more to update since then, but I won't overwhelm you with reading.
But here's a breakdown of the average age when walking occurs: 27% by 20 months 54% by 32 months 15% by 32 months 4% by 58 months
So, 96% are walking by 32 months. Micah is definitely an outlier. But he's getting closer. One of the things that will be a big barrier now is that he's getting close, but he's also getting ornery. Yes, it's true. Micah is officially a "terrible two." He has learned the power in the word, "no," and he is using it.
Micah wears orthotics called Sure Steps. He's had them for almost a year. They are made of a flexible plastic that stop at the ball of his foot, so they support his ankles, but don't inhibit him from doing a toe push-off. He became much more confident standing up (holding onto something) when we put them on him last December.
Micah is starting school soon (January at the latest, but maybe for a couple of weeks in December). I'm hoping that being around other kids his age will motivate him. He might do better being pushed by someone other than myself. He's doing better. And he'll get there... at his own pace.
It's almost ironic that this day falls in the middle of Down syndrome awareness month. We lost twins in 2006. It was horrible. It was the worst day of my life. And it didn't get any easier for me as the months passed and it seemed we were back into our infertility struggles.
After months and months of waiting, we finally made the leap to IVF. There was a lot to decide. I won't bore you with all of the details. But the process was beginning. I had my mid-cycle ultrasound and bloodwork and I then started my shots. After 8 days I just didn't feel right. I took one of my leftover pregnancy tests. Turns out that not only did God not want us to raise the twins, but He also didn't want us to conceive our next child through IVF. I was pregnant... with Micah!
I miss Joshua and Eli. It still hurts to see toddling and preschool twins. They would be four this Christmas. I wrote a lot more about them (and this remembrance day) in last year's October 15th post.
I'd like to ask you to pray for the families who have lost children, whether that be through miscarriage, stillbirth, or and infant death. And if you feel led, light a candle at 7:00pm wherever you are. If you are grieving the loss of a child, I'd like to encourage you to share your grief with God... He can handle it.
About a month ago I began a blog posting about international special needs adoption. I'm not finished with that posting yet. But stay tuned.
And until then, I just have to share a blog posting from a blogging and Facebook friend who shares about Tori. She's in a mental institution overseas because she has cerebral palsy and "aged out" of the orphanage (not at age 18, mind you... at age 4 or 5 it happens there). Do you know what that means? It means, most likely, that she will be confined to a crib the vast majority of every day (if not all day). She will not receive therapy or schooling. She will wither away and die. Why? Because she's not "perfect." And over there, it's perfectly acceptable to just throw her away.
It's been three years since I got the call. The words were, "Hello, Jennie, this is Dr. H. I have the results from your amniocentisis and I have bad news for you. Your baby has Down syndrome." I started this blog the next day.
There's been some research done that shows that a woman remembers receiving the diagnosis the same way someone remembers where they were on 9/11. I'll share a link to a video (though it's not working for me right now). http://www.ndsccenter.org/physiciansguide/ (click on "For a greater understanding of the importance of your role, please click here") She remembers the wording almost verbatim 20 years later.
So to the doctors out there... Please choose your words carefully.
At the time we received Micah's diagnosis, we already knew he had duodenal atresia (that was the main reason we chose to get an amnio... we didn't want to be worrying about Down syndrome when he was in surgery after he was born). We didn't know about his heart defect (that was found a few weeks later). When we found out about the heart defect, it was like another dagger. We had dinner in Milwaukee that night with my bro and his then girlfriend (who is, thankfully, now our sister-in-law!) after our "tour" of Children's Hospital. I don't think I had many tear-less moments that night.
All of Micah's medical stuff has been much more burdensome than the fact that he has Down syndrome. I look back on three years ago and I wish I hadn't spent so much time being sad. Micah's pesky and perky extra chromosome has brought many blessings to our lives.
Have you ever seen this little rapper kid? Very cute (though I'm sure he'd rather I not use that descriptor). And how sweet of him to do a song about his adorable little sister! (If you're reading this blog posting on email, you'll need to click through to my blog to see the video) (And if you double-click on the video, you can see the full frame on YouTube)
I still have a sinus infection and feel crummy. So I'm "punting" and copying April's posted poem today (I had the privilege of actually meeting April in Atlanta at the DownsEd conference in September!). And I'm pretty sure this poem will bless you more than any words I could type today.
TAKE A WALK IN MY SHOES
by Susan Drumright
I am a kid with Down syndrome. It is not something I could choose. I'd like you to know me better. Would you take a walk in my shoes?
Down syndrome affects my body from my muscles to my brain. But I'm more like you than I'm not. Come with me and I'll explain.
Let's take a walk together and you can see things through my eyes. Look we both have Nikes on and we even wear the same size!
As we walk listen carefully, I'll be teaching you about me. Together we can have some fun, but your help will be the key.
Be patient as I am talking. I often get tongue-tied. If you can wait long enough, you'll see we're the same inside.
In school I'm often frustrated, learning stuff that's new. Learning isn't as easy for me as it seems to be for you.
So if you see that I'm in trouble and I need a little clue. Try drawing me a picture or showing me what to do.
Don't worry if I tell you, "No thanks, I don't want a hand." I like to do things for myself. My motto is: "I CAN!"
But you can always help me by cheering for my success. Just like I'll cheer for you when you score a goal or ace a test.
Smiles, hugs, pats-on-the-back...they all make me grin. I'll give back all these things to you, multiplied by ten.
My world is full of fun things, like movies, pizzas, swings. It's great to have a friend to share in what each day brings.
Thank you for walking in my shoes. I wanted you to see. I really need a friend like you who likes me just as me.
What do YOU do when you meet someone with Down syndrome? Do you look for something you might have in common with that person? Or do you immediately go to the differences?
One of my biggest concerns when we received Micah's diagnosis was that Nathan would no longer have the playmate close in age to him for which we were hoping. It was exaggerated by the fact that we lost twins almost a year before conceiving Micah and that loss was still fairly fresh in our minds.
Fast forward to today. I do receive little stabs to my heart when I see Nathan playing more with Matthew than with Micah. And that occurs primarily, I think, because Matthew is a lot more mobile than Micah (I'll address Micah's lack of walking ability in a future post... thanks for the question, Colleen), which is understandable. But Nathan has figured out that Micah loves to give hugs (well, not to just *anyone*), so he practically bowls Micah over with hugs these days. It's insanely sweet.
We have learned a bit about siblings of individuals with Down syndrome since I was pregnant with Micah. And Mark went to a seminar at the NDSC convention in July with Brian Skotko, MD, who is a sibling himself and a huge advocate for Down syndrome awareness (I hope to remember to blog a bit about him this month too). I think I've already seen a benefit to Nathan having Micah as a sibling. Nathan fits a lot of the stereotypes of a typical first-born. He is VERY extroverted and likes to be the center of attention. I wonder how much worse that would be if there weren't therapists coming to our house every week who spend time focusing on MICAH, not Nathan. That drives him absolutely insane... to the point that I've tried to schedule most of Micah's in-home therapies while Nathan is in preschool. But I KNOW that it's good for Nathan to see someone else in our house getting attention that he desires for himself.
We moved to MN a year ago. Nathan had his first day of preschool in MN on October 12th, 2009. It was a record snowfall that day. Here's a pic:
Can you believe that was a year ago? Today it's 80+ degrees here!!!
Anyway... I have also neglected to post pictures of Nathan's first day of preschool this year, as well as birthday photos. So here ya go!
First day of school:
The first thing he finds in his new classroom is...
(do you think McD's donated all that stuff? brilliant, yet annoying, marketing, huh?)
Ah, an art project... my very active little guy loves crafting!
And... Nathan turned FIVE years old in September. Hard to believe... five years ago I brought home the little boy who made me a mommy (and he was the only one I got to bring home when I checked out!). For a walk down memory lane... here is a video of us finding out that Nathan was a boy. We had my perinatologist put the pictures in an envelope and we opened the envelope at a party with some friends. On the phone on a conference call were friends and family who couldn't be at the party. It was great fun to have the "gender reveal" be a fun event with everyone. (for those of you who are reading this post in your email and not on the blog, you'll have to click here to go to the blog posting to see the video)
And here's our little burrito
And the fifth birthday party...
Because it's just not enough to feed the kids cake... I had to make a "candy" cake
Happy birthday, my dear sweet boy. I love your boundless energy, your love for life, your love for others (including your brothers), your love for God, and your snuggles.
Welcome to our family blog. We have three boys: Nathan (7), Micah (4), and Matthew (3). Nathan is our energetic, sports fanatic first-born. Micah is our charming little guy, who happens to have an extra 21st chromosome (aka Down syndrome) and multiple associated health issues. Matthew is our big-boy-wanna-be. I started this blog the day after we found out that Micah has designer genes (Trisomy 21, aka Down syndrome). We've been through a lot of ups and downs (and a lot of time in the hospital), but God is faithful and continues to show His love toward us.