Buddy Walk photos

Back on 9/6, we walked in the Green Bay Buddy Walk. I couldn't believe how many people were there! We had a great time walking with Erin and her family. Erin's mom, Kris, and I lived on the same floor in the same dorm my freshman year at Michigan State. Crazy! They have a super fun family with seven children.

We also got to see Logan and his family. Nathan just loves to hang out with Devin.

Nathan went on his first pony ride and had a lot of fun.

New tube works!

(this photo was taken at the Buddy Walk on 9/6. I'll post more info and photos of that sometime soon)


So far, so good. Micah's new tube appears to be well-placed downstream so nothing is backing up to his stomach. This is very good news.



Our happy boy seems to be taking a hiatus, though. Since leaving the hospital, Micah is much less likely to issue smiles to people he doesn't know. He wanted nothing to do with his speech therapist today. I guess it's understandable that he wouldn't be incredibly trusting of people. He's had a rough few weeks. He had some periods of discomfort today and I don't know the cause. I think he's becoming more of a mommy's boy too. He is crying when I leave his room and he doesn't often do that in the evening. He only smiled at Grammie yesterday when he heard my voice. Yikes. I hope he gets back to himself soon.



Please pray that I would be able to lovingly get him back on track with his therapies. He is rather weak and protests "work," but he needs to get back to exercise too.

New tube

I wonder if this should be "feeding tube awareness month" rather than Down syndrome awareness month. Micah got a new tube again today. Let's hope this one stays put for the full three months before it needs to be changed again.

I spoke with the PA (physician's assistant) in radiology before they worked with Micah's tube. He said he would put in a slightly longer tube this time in hopes that it will stay put in his jejunum. So far so good. Micah has been on feeds since about noon and has been very comfortable, barring the pain he feels around the site on his belly. He was none too pleased to have this done again. It took longer than usual, I guess because of where they were trying to place it. Poor little guy... big alligator tears when I came in to get him (I can't be in there for the procedure). He looked mad for an hour or so. He would start to smile at me and then it was as if he thought, "Wait a minute... I'm still mad at you for taking me there."

ABC News featured a girl with Down syndrome this evening. She was voted Homecoming Queen at her high school. Check out the story (and video) here.

Unbelievable

I have to take Micah back to Milwaukee tomorrow to have his J-tube repositioned... again. After all this backup into his stomach, we decided to head to our local hospital to have the position of the tube checked (it's called a "contrast study"). The tip of his tube is in his duodenum, not his jejunum. The reason he has a J-tube is that his duodenum doesn't work properly. So with all of his food going into that spot, only some of it is actually going through. The rest of his food is backing up to his stomach.

The radiologist who did the study talked with me about the possibility of him someday being able to replace/reposition Micah's tube here so that I don't have to take him to Milwaukee every time. He doesn't do many of these with babies. And the major issue really gets down to the possibility that he would have to be sedated for the procedure and since he's a "cardiac kid," he has to go to Milwaukee for sedation, since that's where the pediatric cardiothoracic anesthesiologists are located. But I really liked this radiologist.

Anyway... by our calculations, the interventional radiology (IR) dept at Children's is batting .500 right now with Micah's tube placement. That's not a stellar record, in my humble opinion. Seriously... his tube was just replaced last Wednesday and it was out of place by Saturday. How does that happen? Anyone out there reading this who has a kid with a J-tube? Please share your experiences.

I really want to share a positive post, especially during this month of Down syndrome awareness. Please pray that we get through all this yucky stuff soon. Micah's weight is dropping since he hasn't gotten enough nutrition now for 2.5 weeks. He's pretty weak. It's getting a bit scary.

The call, one year ago today

It's been a year since the dreaded phone call from the geneticist. It's been a hard year. Most of the time, our issues are related to the medical issues that Micah faces, not the underlying diagnosis of Down syndrome. But there are definitely days that I'm sad about that too.

I'll be spending some time on the phone with GI again tomorrow. Yesterday morning, Micah started vomiting. He would probably still be vomiting if it weren't for the drainage bag we are using on his stomach now, per a conversation with GI yesterday morning. We're supposed to replace everything that comes out of his stomach with an equal amount of pedialite. We didn't do that yesterday (we didn't have any pedialite and we wanted to give the kid a break, though he truly needs some nourishment) and Micah slept peacefully for TWELVE HOURS last night (before going to the hospital, we were struggling with him being uncomfortable and not sleeping longer than an hour and a half at a time... very tiring for all of us). His poor little body is more comfortable without food going in. And if the volume of milk he's getting is too much for his little body to handle, then how is pedialite going to improve that? Yes, it can help keep him hydrated, but ultimately the pedialite or the formula is going to go up to his stomach and get drained off.

Maybe it will just take a while for his system to be able to function efficiently enough to "consume" the calories he needs to grow. My guess is that we will also need to increase his formula to 27-calorie concentration. He's been on 24-calorie since mid-February. Regular infant formula (and breast milk) is 20-calorie.

I just want him to be better. And he's definitely better than he was when we admitted him to the hospital two weeks ago. But his poor gut...

We're so thankful for our little guy. His smiles just melt your heart. He's awfully sweet and that makes it hurt even more when he hurts.

Micah and Nathan are getting a baby...

... brother. Yes, Colleen, it's baby boy#5 (after our two and your two) who will be wearing the same clothes. :-)

We're home!

Micah was discharged this afternoon. He got very excited when I put him in his car seat in the stroller. Then he slept the whole way home. It's great to be here. I'll share more tomorrow.

Please vote

You'll see on the left bar there's a place to vote on whether you think our next baby is a boy or a girl. Please vote. We'll release the answer on Saturday at noon. Yes, we know the answer, but you'll have to wait until Saturday to find out. I meant to post the poll earlier, but we've been a bit busy with Micah in the hospital.

edited to add: Micah's feeding rate has been increased gradually for the past two days. He is now at "full feeds," though that's with a lower rate over 24 hours rather than his regular rate at 21 hours per day. We'll go home on the 24-hour rate and work on raising the rate next week so that he can have a few hours a day off the pump again soon. Anyway... they want to watch him on "full feeds" for 24 hours, which would mean we should be able to check out of the hospital tomorrow afternoon. Yay! He's a much happier baby... smiling lots, but he grumps at the physical therapist. He's very weak but I'm hoping he bounces back soon. The prevailing theory about what caused him to be so sick is that he had some sort of virus last week that shut down his intestines. Yikes. It's not even viral season yet. This could be a long winter... Fortunately, he qualifies for another year of RSV shots due ot his heart defect, so we don't have to worry about that particular virus. But we are going to spend another winter probably keeping him away from other children.

Attitude

"Your attitude should be the same as that of Christ Jesus." (Phil 2:5). My, isn't that a tall order?! It doesn't say, "as long as the circumstances are to your liking," or "as long as you feel justice is being served." There are no caveats. Here's the whole section of Phil 2:1-11

1 If you have any encouragement from being united with Christ, if any comfort from his love, if any fellowship with the Spirit, if any tenderness and compassion, 2 then make my joy complete by being like-minded, having the same love, being one in spirit and purpose. 3 Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves. 4 Each of you should look not only to your own interests, but also to the interests of others.
5 Your attitude should be the same as that of Christ Jesus:
6 Who, being in very nature God, did not consider equality with God something to be grasped,
7 but made himself nothing, taking the very nature of a servant, being made in human likeness.
8 And being found in appearance as a man, he humbled himself and became obedient to death - even death on a cross!
9 Therefore God exalted him to the highest place and gave him the name that is above every name,
10 that at the name of Jesus every knee should bow, in heaven and on earth and under the earth,
11 and every tongue confess that Jesus Christ is Lord, to the glory of God the Father.

Does righteous anger fit into this somewhere? How do we determine when it's okay to be angry? Jesus was pretty angry in the temple and that was okay. I'm afraid my attitude is not exactly Christ-like right now. Please pray for me.

Micah's feeding tube clogged last night around 9:00pm. We tried multiple things to unclog it. Micah's nurse was waiting for something to come from the pharmacy to use when I left at 10:30pm. I figured it would work. No such luck. It's like there's cement in his tubing. Nothing is working. We had to wait until 8:00am to page the on-service G-tube nurse. When she called back, she basically told Micah's nurse that there's nothing she could do that wasn't already tried, so we had to call interventional radiology. Between the calls to GI and radiology, we finally now are at least on radiology's radar screen to get Micah in for what will likely end up being yet another tube replacement sometime this afternoon. If this happened at home, I certainly hope it wouldn't take this long to get him in. At least he has an IV line and is getting IV fluids. But he hasn't gotten any food again since 9:00pm last night. So, we're losing ANOTHER DAY just waiting. We're in Children's Hospital prison. Where's the room with the padded walls? They'll need to put me in there soon.

Micah is smiling again!

Micah is feeling much better. He is closer to his normal, flirty self. I've missed the full-face smiles so much and it's wonderful to see him happy again.

Today it was 5:00 before the GI doctor came to see Micah. I made a decision at 2:00 that I was sick of waiting. The resident on the floor agreed with me and we increased his feed. He told the GI doc that's what we were doing and he gave a verbal okay. At 3:45 I met with someone from Patient Care to express some of my concerns with the delays and inefficiencies we've experienced while being here. At 4:15, Micah's GI doc (not the one on service in the hospital) dropped by. There has apparently been discussion about what is potentially causing Micah's feeding discomfort. They think there *might* be a semi-obstruction more downstream. There's no plan to test for that at this point because it's another trip to the OR. So we're going to try to increase his feeds to the volume he needs and take him home. If we hit a point where he's not tolerating the feeds, then an endoscopy that goes all the way through his intestines is the next step.

Micah had a great night last night (he only woke up twice). But... he just woke up pretty uncomfortable already and it's only 9:00. I'm not sure that we should raise his rate again tonight (the plan was to up it every 8 hours, so he's due for another increase at 10:00). It's tough to know how much to push him. If we are able to get him up to his necessary rate tomorrow, then we could likely take him home on Thursday.

Down syndrome stuff: I mentioned in yesterday's post that individuals with Down syndrome are much more likely to get leukemia than the rest of us. Someone posted a comment (anonymously) which I think you all will find interesting so I'll post it here on the "front page" since not everyone reads comments:

However, kids with Down syndrome also have a much higher CURE rate for leukemia. They also have a much lower rate of other cancers. For example there is only 6 cases of lymphoma in people with Down syndrome... in the last 30 years. They very rarely get anything other than leukemia. When they do get leukemia they respond better to the medication. There is something on the 21st chromosome that helps them fight cancer. Researchers are looking at people with Down syndrome to find the cure for cancer. So while they have more of a risk of GETTING leukemia, far more of them BEAT it than typical kids. 90% for typical kids vs 98% with kids with DS for ALL... and 85% for typical kids vs 95% for kids with DS for AML. I think it's a trade off that's worth it. :) More likely to get it, but also more likely to beat it. Not to mention, helping find the cure for cancer.

I wasn't trying to be negative when I pointed out that little Down syndrome tidbit yesterday (just adding a small fact). I very much appreciate the positive attitude contributed by the person who commented. The 21st chromosome seems to possess a lot of interesting traits. Other research has shown that individuals with Down syndrome may show symptoms of Alzheimer's at an earlier age. I'm so glad to hear that people with Down syndrome could potentially help develop a cure for leukemia and Alzheimer's. But I have to say, I just feel that our little guy has been through so many health-related issues already... please, God, don't let him get anything else.

Slow day

Micah seems to be feeling better today. He issued a number of smiles (including at his aunt, uncle, and cousins who were here visiting from Georgia). He seemed to be less comfortable in the afternoon.

Because it's Monday, that means we have a new GI doctor on service. We didn't see him until 4:30 this afternoon. In a nutshell, he ordered another belly x-ray. This was, apparently, "unremarkable." Sadly, he didn't come by again after those results came in. And he didn't put anything in Micah's chart about what to do if his x-ray didn't appear to show anything significant. So the rate of Micah's feeding has not increased in 24 hours. We basically gave an entire day to Children's Hospital today. I'm glad to have a new set of eyes trying to figure out what's wrong with him. But I don't want to repeat a bunch of tests without making forward progress either. I can't write any more about it without fuming so I'll stop here.

Down syndrome fact of the day: Individuals with Down syndrome are 15-20 times more likely to develop leukemia than individuals without an extra chromosome. Scary.

Slowly starting feeds

The comedy of errors continues. Apparently, anesthesia can cause a slow-down in the GI tract, so yesterday's upper-GI study was pointless. So... if they KNEW that was a possible side-effect of anesthesia, why didn't they do his upper-GI study a few days ago BEFORE doing the endoscopy, etc.? I couldn't go back to the hospital to meet with the GI doc this afternoon. Mark met with him instead. Though tomorrow is going to be a pain because there's a new GI doctor "on service" and we'll sort of start from scratch with him, it seems it will be a good thing to rid ourselves of the GI doc we've had this week. He seems to be a fairly intelligent guy, but maybe he was too distracted with some other more serious cases this week and has made some questionable calls with Micah's diagnostic procedures.

We're insisting on another upper-GI study either tomorrow or Tuesday to see "if" he has a significant slow-down in his intestines. They've started his feeds back up and will increase them very slowly to see what he will "tolerate." I really don't like that word. I've been told that they consider Micah to be "tolerating" his feeds because he doesn't vomit. The truth is, even with his reflux, Micah has only really vomited one day (the day before we brought him to the hospital). When he refluxes, very little actually makes its way to his mouth. I don't think he has the muscle tone required to truly vomit. And besides, when he seems to be getting uncomfortable, I have the ability to "vent" his stomach and take out the excess air and fluid through his G-port. I don't want to have to stop venting him just to prove to the doctors that he's not "tolerating" his feeds. Does screaming and a bloated stomach not count as "not tolerating" his feeds?

I'm hoping to get a nutritionist to consult with us tomorrow. I'd like to know what level of food Micah needs to be getting for sustenance. I want to make sure that they're calculating his food level while taking his low motility into account. It's possible that we're over-feeding him based on some kcal/kilo calculation for a "normal" kid and I'd like to consult with a nutritionist who knows more about kids with Down syndrome and the effects of slow motility.

I realize I've been more than a bit negative lately. I'm not sure what to do about that except pray. Could you please pray that I would have a peaceful heart and speak pleasantly to Micah's caregivers? The nursing staff has been wonderful and I hope I can show them some appreciation in the midst of my frustration.

BTW... Micah is 9 months old today. I'll try to post some photos soon.

And the verdict is...

Hey, guess what. Micah has incredibly low motility in his GI tract (surprise, surprise). He finally had his upper GI study this afternoon. But it was basically cancelled after just one x-ray because the barium fluid they injected into his J-tube did NOT travel down his intestines. It all backed immediately up into his duodenum and into his stomach. Surprise, surprise.

I don't know what the next steps are. But this is not the easiest diagnosis to treat. I probably won't be back online this evening, but I'll update more tomorrow.

Down syndrome info for the day: Motility is an issue with lots of kids who have Down syndrome, so Micah is not alone in his GI struggles. Not many have issues as extreme as his, though.

Okay, so maybe NOT a diagnosis

So apparently this supposed bowel infection (called C Diff) does not impact babies under one year of age. This bacteria(?) creates a toxin and babies' bowels don't yet possess some sort of binding property that would enable the toxin to do damage. So that's not what's causing his issues.

Micah actually got a four-for-one in the operating room today. It was quite a deal, really. 1) Someone from radiology put in a PIC line (he kept blowing IV's, and we don't know if he's going to be able to tolerate feeds so he *might* end up needing nutrition through that route... I'm glad to lose his other IV because after blowing another IV yesterday, they had to put one in a vein on the top of his head... I'll post a pic after I get home since I can't do pics at the hospital). 2) GI did an endoscopy (EGD) and took a camera all the way to his jejunum (2nd part of the small bowel) and biopsied his colon as well. 3) His surgeon was there to investigate improvement in his duodenum. 4) An ENT (ears, nose, throat) doctor cleaned out his ears and checked for fluid (he would have put in tubes if Micah had needed them... Micah had lots of wax, but no fluid).

So there's good news and bad news. The good news is that they didn't find anything wrong. The bad news is that they didn't find anything wrong, so there's nothing to treat.

Tomorrow Micah will get and upper and lower GI study. They will inject barium into his tube and take x-rays for about 12 hours to see how long it takes for the fluid to make its way through his system. This will check for areas that might have slowed down significantly. I'm still not sure what they would do, if anything, if they find a slow spot.

It's completely possible that Micah has some sort of virus going through his system and will take another week to work its way out. Once they get the results from the biopsies, if all looks good with them, they will cease his antibiotics, increase his feeding through his tube (he's only getting 3 hours tonight... should have been 6... but somehow that didn't get communicated to his nurse... imagine my surprise when I returned from dinner to find that Micah was still not getting food), and likely send us home whenever Micah gets to full feeds.

There are some things I still don't understand. Does green bile in his stomach really not concern the GI doctors? They say it happens. Okay, I've checked the fluid in Micah's stomach five times a day for the past, oh, four months or so, and it's always been medium yellow in color. I've seen it go from dark yellow to brown to green this week. Call me crazy, but back in January after he had his duodenal atresia surgery, we weren't allowed to feed him until the green stuff was no longer present in his stomach.

I'll update more tomorrow. And sorry... I'm exhausted, so no little fun fact about Down syndrome today.

At least one diagnosis made

Micah has had quite a busy afternoon. He's had a testicular ultrasound (long story... I'll find out more from urology tomorrow), an echocardiogram (which showed that his heart looks the same as it did back in May... not worse, but not better either... he still has a bit of valve leakage), a brain MRI (the thing I don't understand any better today than I did yesterday... we should have the results of this by tomorrow afternoon), and a belly x-ray.

Once we got back from all of those procedures, we found out that a culture came back positive for a bowel infection. This infection could be causing most of his belly pain. Wouldn't it have been nice if they had tested his stool on Sunday or Tuesday when we asked if they should? (to which they always replied that it wasn't necessary, until they ordered the test on Tuesday afternoon after he had pooped that morning and didn't poop again until today). He has quite a miserable belly right now. When I check his stomach for gas and fluid, there's bile in it, meaning his intestines are slowing down significantly and backing stuff up into his stomach.

Anyway, he is to start a round of antibiotics tonight. I'm not sure how long the course of treatment is, but it will be given through his IV line. Please pray that one round of antibiotics would kill this infection and that it will not return (which is unfortunately common, and not something we care to deal with). This infection could have already caused damage to his colon. Please pray this is not the case.

Micah will be going to the OR tomorrow at 2:45 for his endoscopy and to check his ears. Please pray that the procedure would go smoothly and quickly.

Down syndrome info for today: Many individuals have a simian crease (aka single transverse palmar crease. Micah has a simian crease on each of his hands. It's very cute. I'd post pictures, but I can't do that from the hospital. So here's the link to Wikipedia if you'd like to see examples.

31 for 21 begins

Seems like a perfect time to have committed to updating the blog every day. I'm certainly not at a loss for what to share. It's condensing it into readable form that creates the problem.

Today the 3-ring circus really grated on my nerves. It's been a comedy of errors around that place this week, with Micah bearing the brunt of the errors. We have received numerous apologies from doctors and nurses today. The biggest decision made today is that Micah's GI tract needs to be "scoped" (an endoscopy, or EGD, for those of you in the medical profession). After setting a time of 3:30, the GI fellow realized (after questioning from "Mom"... they don't bother learning parents' names around here) that she was dealing with a "cardiac kid," so the procedure couldn't be done in the normal location... it had to be done in an operating room with an anesthesiologist who specializes in cardiology.

Putting Micah under general anesthesia in an OR is something we try to avoid, but this EGD seemed to be inevitable to us all week. So once the on-service GI doctor put in the order for it, Mark decided to pack it up and drive here so that he could be here while Micah was in the OR. We were "on call" for the afternoon, meaning it could happen anytime that an OR opened up with an appropriate cardiologist. I had a 5-minute warning that surgery was coming up to get him at 1:00ish. So, down we went to surgery (Mark was en route at that time). Long story short, after talking with me for 10 minutes, the anesthesiologist went out to do some more "research" on Micah.

She ultimately decided that she didn't want to put him under until they could rule out infectious endocarditis (an infection in the lining of the heart). The reason for concern is that Micah has had intermittent elevated temps since Sunday (his highest being 102, which is the threshold, apparently, for when they would take it seriously... are you serious???). So not much concern has been placed on his elevated temps (this is one of the circus rings, I think). Don't worry... no one REALLY thinks he has endocarditis, but they have to rule it out.

They had him scheduled for an echo cardiogram this afternoon but didn't go through with it because the cardiology team couldn't decided whether they could even give him the sedative required for the procedure. Once they worked through all this, it was past 5:00 so it appears he'll have his echo tomorrow. After they sedate him for the echo, they'll also do an MRI of his brain. Don't ask me to explain why. This is the one piece of the puzzle that I don't understand.

He now won't get his endoscopy until Friday. They're also going to have an ENT (Ear, Nose and Throat) doctor in there to check his ears while he's under anesthesia (can I just tell you that if this all comes down to an ear infection, I'm going to go ballistic???). But if the ENT deems it necessary, he can place ear tubes at that point rather than us having to schedule that for a later time.

This brings us to the Down syndrome education point of the day. Most individuals with Down syndrome (Ds) have narrow and sometimes oddly-shaped passages resulting in frequent ear infections and higher incidence of hearing loss. So placing tubes early on can sometimes help avoid those side-effects.

Sick baby

It appears we're in for a long haul. Micah had a terrible night last night (thanks, Mark, for taking one for the team while I rested at the RMH). GI decided to try a new formula today, LOL. Okay, I'll play along, but I'm pretty sure that's not his issue. Sure enough, after less than an ounce he was writhing in pain again and that has lasted all day. He's hardly had any food since Saturday at 2pm. And he's just on IV fluids tonight. This afternoon he spiked a temp of 102, but it's been down ever since.

I'll try to update more tomorrow, but I need to sleep since Micah is sort of quiet right now.

Micah's GJ-tube

Micah got a new tube 3 weeks ago. Apparently that tube was not positioned correctly to start with, or it has somehow dislodged since then. This is likely the cause of his significant pain over the weekend. Funny... he had an abdominal x-ray on Sunday in the ER and the ER docs said the tube was in the right spot. But this morning in radiology, they looked at the same film and said it didn't look right. Of course, the specialty radiology dept looks at these things all day so they can tell pretty much right away by looking at a film. It's not a huge surprise that an ER doc wouldn't know if it was in the right spot or not. But they shouldn't have said it was good without knowing for sure. They actually considered sending us home last night!

Poor baby was so dehydrated they couldn't get an IV line into him. After tries by two phlebotomists, they had to call in the expert from anesthesiology. He finally got a line at 12:45am and got a large push of fluids which he's still getting on continuous drip. By 7:30am he still hadn't urinated (they needed to test it), so they put in a catheter and STILL couldn't get anything. All was better a few hours later, but he was incredibly dehydrated.

He didn't cry at all overnight. It was as if he was thinking, "Finally... no belly pain."

We're here for a couple more days, I think. Micah is getting some milk via his J-tube, as well as IV fluids. The rate of milk will go up consistently until he's at his recommended volume (which he'll hit around 11pm tomorrow night). If he tolerates that overnight tomorrow, then we go home and all is well. But the prevailing thought of his GI doc is that there are other issues going on in there. So we'll see if he hits a wall before hitting his full volume.

Mark is kindly swapping with me tonight and he'll sleep in Micah's room. We were again fortunate to get a room at the Ronald McDonald House (they called last night at about 7:30 saying someone had just checked out and we could get the room if we could get there in 15 minutes... Mark slept there last night). So tonight I get a night of sleep tonight away from baby noises and pump beeps. G'nite!

Back in Milwaukee

Yes, it's another fun night at Children's Hospital. Micah's belly pain has been getting consistently worse. Now he can't even tolerate feedings or even pedialite (after his pump runs for 1/2 hour or so, he starts screaming), so we're here for at least one night. He's about to start getting IV fluids. I'm staying in his room with him and Mark is at the Ronald McDonald House (we don't know how long we'll be here, so we thought it prudent to take the room that opened tonight). Micah's next door neighbor's family is REALLY loud and I hope it doesn't affect my ability to get some rest (too late, as you can see by the time of my post... I had tried to go to sleep at 9:00 when I finally got Micah to sleep).

Please pray for wisdom for the doctors to figure out why Micah is having so much discomfort. I'll share more info tomorrow.

Too ambitious? 31 for 21

As you can see, it has taken me 11 days to post something new, so I'm definitely not one for daily blog updates. But, I think this is a good motivation for me to do so for the month of October. There are 31 days in October. The 21 stands for the extra 21st chromosome possessed by those with Down syndrome.


October is Down syndrome awareness month. We also found out last year in October that Micah has Down syndrome. So it seems appropriate for me to spend this month helping to raise awareness about Down syndrome on my blog. I don't think I'll focus on Down syndrome every day. But I'll update the blog more often.

Anyone is welcome to participate, even if you don't know someone with Down syndrome (though if you read my blog, you "know" Micah). :-) So feel free to visit Tricia's blog to get the button and join the October blogging adventure.

(BTW, new photos will follow soon)
And just a reminder... you can "subscribe" to my blog by entering your email in the box on the left column (under all the family photos). Follow the instructions and you can get an email each night that I actually do update the blog (thus eliminating the need for random guessing on when I'll be responsible enough to post an update). The full blog posting, including pictures, comes to your inbox so you can read it at your leisure.

9/11

Where were you? Most of you probably remember that day well. I won’t go into my story of that particular day. It was the rest of the week and the following week that had the biggest impact on me.

Some co-workers and I loaded a van with supplies and drove up to NYC a couple of days after 9/11. As we left Florida, we drove through a tropical storm. We stayed overnight at a co-worker’s parents’ house in Richmond, VA, the first night. Then we drove past the Pentagon on our way to NYC. D.C. was eerie. But not as eerie as NYC. Driving through New Jersey and looking East to see a big gap in the skyline just made my stomach sick. Other prominent memories: driving into Manhattan without traffic, seeing people walk around the streets with photographs of their loved ones, making more eye contact with New Yorkers than all previous trips combined (compared to the task-oriented, stare at your feet sort of walking), daily prayer with about 100 Campus Crusade staff members before heading out for the day, staying at a hotel where lots of firemen from around the country were staying, getting off the subway at Wall St. the first day the subway was open and smelling the “air,” flying home from JFK with all the security increases and still getting my keychain through with a pocket knife on it. Mostly, though, I remember the heaviness of just being there. The world would never be the same. Or would it?

One of the things I did while in NYC was phone interviews for a website we put up for spiritual support for people affected by the tragedy (who wasn’t?). I spoke with a partner at a major financial services company who just wasn’t sure if he wanted to EVER go back to work because he was questioning the validity of what he had been striving for. He had lost friends who were at work on 9/11. A good friend of his would have been in the wrong place and the wrong time if it weren’t for being late for work due to attending the football game the night before. I spoke with someone who would have been in the wrong place at the wrong time if it weren’t for him being at a Bible study that morning that “just happened” to run long because it was the first meeting of the new season. I spoke with someone whose friend left her office to get a cup of coffee and chose to actually leave the building instead of get a cup of coffee in one of the many coffee shops inside the Trade Center.

I’ve frequently wondered what has happened to all these people whose lives were spared or significantly impacted that day. I was very fortunate to not lose any friends that day, but they were not so fortunate. Did the shock and horror of it all diminish in importance? Did they eventually go back to the 80-hour weeks they were working before? Does it still impact me? It definitely does on 9/11. I do think that 9/11 impacted the way I viewed the importance of my corporate career compared to the importance of my family. Has it affected you?

8 months!

Micah is 8 months old today. If you haven't met him, I hope you're able to soon. He's a sweet little boy who breaks into a huge smile if you get close to him. I'll try to post some pictures after tomorrow's BUDDY WALK. If you'd like to support Micah's team tomorrow, either let us know that you'd like to help out (to ARC Fox Cities), or contribute with a credit card by clicking the link in the upper left of this blog page (yes, FirstGiving takes a portion of what you contribute by using this medium).

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)

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

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.

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!

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.

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

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!

Ruby & Braden

We had visitors today! The last time we saw the Zoromski family was while Micah was in the NICU in Milwaukee (back in January). Ruby is a friend who also has designer genes. She has a brother, Braden, who is a year older than Nathan. The kids all had fun. But Nathan was none too pleased when Ruby destroyed one of his "towers" of mega bloks. He will have quite a rude awakening when Micah gets mobile. Look out!

I just realized I never posted photos of our last visit (a couple of weeks ago) with Micah's buddy, Brandon. It had been a while since we had seen them. We met Brandon in Milwaukee the last week of February when Micah went back to that NICU to get his g-tube.

Happy Birthday, Mark!

Mark officially feels older this year. It's hilarious being married to a marketing guy. He's bummed because he has to move up a segment on the age categories. You know when you fill out a survey that asks for your age? He's now in the 35-44 category. My response? "Get over it, pup!" Seriously, though, I feel so blessed to be able to celebrate his birthdays with him for the rest of his life.

(if the "cake" looks a bit odd, that's because it's a cobbler, not a cake)

Nathan to Milwaukee

My friend, Betsy, watched Micah today while I took Nathan to Milwaukee for laser treatment for a birthmark (every other month for 7 treatments, we think... this was his 4th). Betsy's son said something like, "Can we have a baby who looks just like Micah? He's so cute." Isn't that the sweetest thing? I so appreciate this family taking care of Micah today. He enjoyed the attention and laughed at sweet James and Audrey.

Nathan has figured out what's going on with these trips to Milwaukee. He was fairly naive for a while, but on the way this morning he said, "I don't need to go doctor. I fine. I just fine." He was fine in the waiting room (toys, you know), but as soon as the nurse called his name he dropped to the floor on his tummy and cried. He recovered quickly, though, and was a really good boy. He did a bit better this time after he woke up with an IV line in his hand (compared to last time when he kept yanking on it). But he cried out A LOT on the way home. It's tough because he's completely exhausted because I have to wake him up so early in the morning to drive down there. But he's napping now, so all is peaceful here.

Micah's trip to Milwaukee yesterday was good. We need to get his bloodwork done to check his thyroid level again but I didn't feel like doing that yesterday. The nurse practitioner asked me a bunch of questions about Micah's development. She said that he's at 6 months for social development. He's way behind on gross motor skills (yep, knew that one). She kept saying how wonderful it is that he communicates back and forth with eye contact. Yes, that's our social little boy.

We also met with a speech pathologist. He had some new ideas for exercises. He also explained a bit about why Micah has an oral aversion. He thinks that because the tongue is the first part of the digestive system, he doesn't like anything touching his tongue because it initiates the process that is painful for him. He was pleased that Micah tolerates me messing with his cheeks (what, I HAVE to pinch his cheeks? oh, that's too much work for a mommy! :-) ) and that I can put my finger in his mouth as long as I don't touch his tongue (if I do, he gags, and we don't want that to happen often because then he might not let anything into his mouth).

Micah's last weight check put him at 14lbs 4 oz. He's gaining more than an ounce a day. He's chunking out big time. Oh, and the pediatrician doesn't seem concerned about the hyperinflated lung, so we're just supposed to watch for symptoms like wheezing or difficulty breathing. Whew. One less thing to worry about.

Happy weekend!

Perfect hearing and hyper-inflated lungs

Micah passed his 6-month hearing tests today, praise God! His ear canals are quite small, making it difficult for doctors to see his inner ears. But all looks good at this point. We'll just need to be on top of any sort of illnesses because it's quite easy for little ones with tiny canals to get infections.

After the ENT appt, I decided to stop by the cardiology clinic to ask about a cough that Micah has had lately. I figured it would just be a nurse listening to make sure there's no fluid building up (he's only been off his diuretics for 2 weeks). The cardiologist was in and she listened as well. She opted to put Micah back on one of his diuretics for a bit and she ordered a chest x-ray. Now that Micah is 6 months old, he has to be upright for the chest x-rays. Next time he gets one I'll bring my camera. It's like a baby torture chamber. He had to sit sort of on a bicycle seat with his hands in the air and two semi-circular cones around his body and a strap behind his head. Needless to say, Micah didn't enjoy that very much.

Anyway... the cardiologist just called me (yes, at 9pm) because she just looked at the x-rays. It appears Micah's lungs are hyper-inflated, primarily the right one, which is probably why his liver is low (that was one of the reasons that she ordered the chest x-ray in the first place). She said his heart looks good, so something else must be causing the lung issue. He might be having some sort of aspiration (likely when he's refluxing) or he could have asthma, though she said he didn't sound asthmatic.

So tomorrow I get to call the pediatrician and ask what she'd like to do about the lung thing.

Tomorrow (Thursday) Micah sees the endocrinologist in Milwaukee for follow-up for his hypothyroidism. Since we're going anyway, we have an opportunity to see a speech therapist who is part of the feeding team at Children's. It makes sense to take advantage of this opportunity since we can't get Micah into the feeding clinic until November. Then on Friday, I take Nathan to Milwaukee for another laser treatment for his monster birthmark. That's never fun. He doesn't recover well from the anesthesia. Please pray he doesn't get sick on the way home.

Pray for Ethan

Please pray for baby Ethan. His daddy works with Mark. Ethan was born with a serious heart defect called Tetralogy of Fallot and pulmonary atresia. Amazingly, Ethan was big enough and strong enough to have a one-repair situation. Many babies with this defect require multiple surgeries. And he was eating like a champ before his heart surgery so he flew through recovery and was released from the hospital one week after his surgery. But he's back in the hospital with a staph infection in his bloodstream. He's going into surgery today to see if the infection is around his heart. They expect he'll be in the hospital for 4-6 weeks. Please keep Ethan and his family in your prayers.

At long last… Micah’s health update

6month check-up – Micah weighs 13lbs 3oz and is 24” long. This puts him on the “normal” weight chart for the first time in the 1st percentile and bumps him up to the 26th percentile on the Down syndrome chart. He’s a couple of check-ups behind on his shots, but we’ll get him caught up by one year.

Heart stuff – Micah saw his cardiologist last week. She doesn’t want to see him for FOUR MONTHS. Wow. And he’s now off all of his heart meds except one. His blood pressure is good, his oxygenation is 100%, and his respiratory rate is good. He’s still retracting with his breathing, but that should tone down a bit over time as his body realizes it doesn’t have to use so many muscles to breathe. At his next appt he will have an echocardiogram to assess how well his new valves are working (in a nutshell, his surgery was to patch two holes and create two valves from one big hole).

Eating – Micah doesn’t eat anything by mouth. Yes, that’s really hard. It’s hard enough for a woman who wants to nurse her baby to find out that she can’t (for whatever reason). But tack onto that the inability to feed your baby with a bottle, and it just, well, stinks.

Gastrointestinal – This appears to be Micah’s biggest hurdle at this point. We’ve been told to “reset” our expectations regarding Micah’s feeding tube (per his GI doctor: “I’m fairly confident that Micah will be able to get rid of his feeding tube someday… I just don’t know whether than will be when he’s 1 ½, 2, 3 or 4 years old.”). Ouch. That really hurt. And that’s basically why I haven’t updated the blog on Micah’s health lately. We have to draw gas out of his stomach (through the g-port) because it gets distended and causes him to urp. He still has reflux, but he’s on a high dose of Prilosec to limit the level of acid so that it doesn’t harm his esophagus.

Duodenum – Still not sure if it’s working. His j-tube feeds him into his jejunum, which means that the majority of his digestion is done after the duodenum. The GI doctor told us to start trying an ounce a day into his g-tube to see if he’s able to cope with food going through there, then we up to two ounces, and then three ounces. If he tolerates that, then we might be able to start solids soon. There might be an issue with a high volume going through his g-tube because of the j-tube sort of blocking the path downward. I guess we’ll find out. But he’s been able to digest all of his saliva and stomach juices, so he thinks this should work.

Feeding tube – I have a love/hate relationship with this thing. Logically, it needs to be skewed more toward “love,” because without it, I’m not sure whether our little guy would be growing or even living. But he has to be connected to a feeding pump for about 21 hours/day and he has a multi-port tube sticking out from his clothing. A friend of mine’s daughter asked about it at church a few weeks ago, and I told her that, “He needs it because he doesn’t know how to eat.” This little girl’s sweet brother, Will, chimed in and said, “Yet.” I almost cried.

Prayer requests:
* That Micah would tolerate the feedings through his g-tube so that he can start solids
* That Micah would not develop an oral aversion to solids like he has with liquids
* That Micah would get more comfortable and able to deal with the pressure in his belly
* That Micah’s neck strength would increase and he would use his arms more

* But most importantly, that we would truly rest on God’s strength: “I can do all things through Christ who strengthens me.”

Holding up his head

Micah's neck is getting much stronger. He pulls off your shoulder more often these days and he's looking around. Here's his best tummy time:

His PT (physical therapist), Missy, who comes to the house once a week and is in the photo above, said that Micah is probably ready for a Bumbo seat. So we brought the Bumbo seat up from the basement and gave it a try. He leaned more than he should have on the front, but at least he held up his head.

Way to go, Micah!

The following photos are evidence contradicting the "they're always such happy children" comments. Micah wasn't too excited about his bouncy seat for some reason.

No, I don't make a habit of letting him get too worked up. He was just in one of those moods one afternoon where nothing was making him happy. Believe it or not, it happens to Micah. I'm not complaining, though, because he is a generally content baby.

Mango allergy?

This is how Nathan looked before his first dose of Benadryl after a trip to the doctor. The prevailing theory is a mango allergy. Bummer. Dried mangos have been called "candy" by Nathan. Here's hoping the hives go away soon!

Need photos of your children?

Remember when I posted the cute photos of the boys? Here's another one that I didn't post that day because we used it for Micah's birth announcement:

Our photographer, Heidi, is doing a "Mini Session" at Pierce Park in Appleton this Saturday, 7/12, from 9:30-4:30. For $50, you get 30 minutes of time with Heidi, a CD of edited images from the session, and a custom mini accordian album. Heidi's candids are fantastic. She will basically follow your kids around the park for 30 minutes to catch their true personalities. For additional photos, see her website: http://hjselchphotography.com/. If you're interested, email Heidi at hjselchphoto at sbcglobal dot net, or call her at 920-279-2376 to set up a 30-minute time slot.

(I got sick of the old template as a background so I'm temporarily switching to this one with the dots until I can find a different template that I like better)