Day (10) of 31 for 21 - Moved

We made it here to MN last night but I didn't get my computer turned on. Had I been prepared, I would have scheduled a timed posting ahead of time. Oh, well.

I would like to thank the great Artist who painted such a lovely autumn portrait during our drive yesterday. Fall is my favorite time of year. But I'm not a huge fan of snow flakes accompanying the changing colors of the leaves. Yes, there were snow flakes yesterday, not during our drive, but in the morning before we left. Apparently it even stuck to the ground a bit in MN yesterday morning. I'm not ready for this!!!

We considered renting a minivan for this trip and cramming everything into two minivans and a sedan. We're very glad we didn't. We came close to filling a 10-foot moving truck! It took a lot less time to pack clothing, etc., because I didn't have to minimize what we brought: I just took dresser drawers and almost emptied them into tubs. We're in a 3br furnished apartment for five weeks until we close on our house. It's a lovely apartment, but we're in much tighter quarters than this crazy family is used to.

I'll try a Down syndrome post later today.

Day 9 of 31 for 21 - Research, part one

Amy asked: "What are some areas of research that may help Micah and other kids with DS someday?"

I'm glad you asked. There are some great organizations out there. And unfortunately, I'm a bit pressed for time tonight since we are attempting to leave here in the morning to head to a corporate apartment for five weeks before we can move into our new house. This involves disassembling cribs, choosing toys and clothes, etc., so life is a bit insane in our house right now. All that to say, I'll provide the links later, but here are some interesting facts that are fueling some research:

1. Children with Down syndrome are much MORE likely to get leukemia than a "typical" child and they respond better to treatment.
2. Individuals with Down syndrome are much LESS likely to get other types of cancer.
3. Individuals with Down syndrome are much MORE likely to get Alzheimer's, and at an earlier age.

So, because Down syndrome is a triplication of the 21st chromosome, medical researchers are spending time looking at the 21st chromosome and the role it plays in all of the above. This research will help everyone.

But research to better the lives of individuals with Down syndrome is not well-funded (at least with public funding). There are some great organizations out there, though (and I'll get those links, I promise). Separate from that, past and current research has shown that early intervention helps our kids tremendously. That leads me to think I should probably do a whole post on Early Intervention / Birth to Three services and how that has helped Micah and his peers. That's for another day, though, as I return to the basement in search of the winter coats, boots, hats, etc., because we ARE moving to Minnesota and what we take now is all we will have until the rest of our stuff arrives in mid-November.

Day 8 of 31 for 21 - Thankful Thursday

Sorry, no Down syndrome post today. Very tired. But I wanted to use today's post to say how thankful I am for such supportive family, friends, and prayer warriors from our church. Our family has been through a lot since we moved here less than 3 years ago.

Micah had his last visit with his ophthalmologist in Madison yesterday. We went to say farewell to the staff at the NICU this morning (one of the nurses referred to chubby bubby as "cube baby" LOL). Micah had his last appointment at the feeding clinic in Milwaukee last Friday. I actually cried on my way home because we've spent a crazy amount of time there in Micah's 21 months of life (and a couple of days before that). They know him. They know what he's been through. They've seen the progress he's made. They feel a strong sense of "ownership" of his health and his progress.

What I realized after that is that one of the hardest parts of leaving is that we are leaving everyone who has walked through this entire journey with Micah with us (in person, anyway), from prenatal diagnosis to preterm labor to birth to NICU (here to Milwaukee to here to Milwaukee) to intestinal surgery to heart surgery to feeding tubes to oral aversion to another hospitalization to another surgery to many trips to MKE for tube changes... We're going to a place where no one knows. It takes a long time to build up community in a new place. Don't we all want to feel like we're known?

We're leaving on Saturday. I'm very much looking forward to being in the same city as Mark. And I'm looking forward to beginning the next chapter in our lives... mostly. But we're leaving Mark's parents. We'll be farther from my family too.

But I'm thankful for having the opportunity to be here for almost 3 years. I'm thankful for the dear friends we have made here. I'm thankful for the countless prayers that were offered up by our church family, most of whom had never met us before Micah was born (and some we were never blessed to meet). And I'm thankful that Micah was born here, or we wouldn't have met some of the wonderful families here who also have a child with designer genes.

Day 7 of 31 for 21 - Choosing Life

Thanks for asking another question, Paige. Here's her comment on an earlier post: "in utero - it's a dangerous place for a little baby with that diagnosis in this day & age... *what* - if anything - can we (as a society) do to change that? i guess what i'm asking is - how can we encourage parents to take the leap of faith required to choose life?"

Our society is on a slippery slope. The "termination" rate (aka abortion rate) for babies with a prenatal diagnosis of Down syndrome has been estimated at 91-93%. This has been termed "casual eugenics" by some. I think it's a sad sign of our society's priorities when it becomes more socially acceptable to abort a baby rather than put that baby up for adoption. And where will it stop? What if we get to a place of finding out at 15 weeks gestation that a baby will have autism? How "severe" will the autism be? Is that baby going to be aborted? What about advance notice that the child will develop cancer?

Paige, I think the first step is education. There are a lot of doctors out there who are sharing a diagnosis and presenting families with outdated and incorrect information. For example, a neonatologist told me (before Micah was born) that the average life expectancy of an individual with Down syndrome was 30 years. That might have been true 20 years ago when that doctor read a textbook, but it's not true anymore. It's more like 60 now! The difference is due primarily to advances in cardiac surgery, I believe.

The Kennedy-Brownback bill (The Pre- and Postnatally Diagnosed Condition Awareness Act) that was passed in 2008(?) can help. It was designed to improve information and increase referral support for families receiving a prenatal diagnosis. The key to making it work is funding it, though. I'm not sure where that stands right now.

Even though education can help, I'm afraid that the primary problem is that we all want what we want, when we want it. No one *plans* to have a child with a disability. We all have pictures in our minds of what our family is going to look like, maybe not to the last detail, like Nathan going to Michigan State, for example (I really don't care if he goes there or not, but I would definitely care if he said he wanted to go to Michigan... that's a subject for another time). I still struggle with expectations and unfulfilled dreams for Micah. I'm terribly selfish that way. I want Micah to be a statistical outlyer: he could drive, go to college, get married, etc. And as I've mentioned before, I need to continually go back to whether those dreams are for me and my benefit, or whether they're for him. Sorry... off track a bit here.

Back to the question. Another way to help is to let expectant mothers know that there is a long list of families who wish to adopt a baby with Down syndrome. There was a link floating around the Down syndrome community a few weeks ago showing a 3-month-old baby who was up for adoption. There were tons of inquiries about Ryan and he ended up with his forever family fairly quickly because they had a completed home study. I think it's very telling that there are a number of blogs I follow in which the family has a child with Down syndrome and has made the choice to adopt a child with Down syndrome, whether domestically or internationally (I might talk about Reece's Rainbow someday... head to their website for a major tug on your heart strings).

Here's a link to a recent news clip with Dr. Brian Skotko in Massachusetts. And here's the new parent packet put out by NDSS that just gives you some information. It would be great for all expectant parents to receive this when given a prenatal diagnosis. But it's very costly. Most hospitals do have some sort of information packet that they give out to families when a diagnosis is possible or confirmed. But who assembles it? That varies widely. And sometimes there's actually too much information (where do I start? what to read first?).

But maybe the best way to encourage families to choose life is to show them all the benefits that these children provide. And that though life is going to be different than we expected it to be, it will actually be richer because of this child. "Sons are a heritage from the Lord, children a reward from Him." (Psalm 127:3). Please take note: God does not say "perfect sons" or "perfect children" are a reward. Because really... who has perfect children anyway?

Bolus feeding!!!

I'm almost hesitant to post this, but I've been doing bolus feeds for Micah since Friday. You might wonder what that means. Well, until very recently, Micah was receiving his feedings continuously for 19 hours/day (through his feeding tube, which was recently changed to a G-tube from a GJ-tube). A bolus feed is more like a meal. For him, that's about five ounces. And on Friday I tried giving him that volume over a very short period of time (15 minutes).

Today, I gave him FIVE bolus feeds so he does not need an overnight drip feed tonight. This is the first night since May '08 that he hasn't received a feeding overnight, except when he's been sick and we've wanted to give him a break. He also ate orally twice today (about 3 ounces each time).

Oh, and at Feeding Clinic in Milwaukee on Friday, he took an ENTIRE jar of baby food (bananas, in case you're curious). Show off!

Micah has a lot of difficulty with any foods that are more liquid than pudding thickness. We'll keep working on it. But even pureed carrots need some rice cereal added in order to thicken it up.

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!

Day 6 of 31 for 21 - Educating Nathan

This is Nathan with his dear friend, Grace. Isn't she beautiful? And I think he's met his match in the "lion attack" game, don't you?

Lisa said: "I was wondering if you could share on how you've educated Nathan about DS and if you have any resources or tips on helping children understand DS."

I mentioned yesterday that this would be a short post. The answer to the question is, "We haven't." Nathan just turned four 10 days ago (oh, yeah... I need to post his birthday stuff!!!). When Micah was born, Nathan was not yet two and a half. There was no need to explain anything to him at that age. We talked to him about Micah's heart and his tummy being hurt. That was the year to explain sickness to Nathan, since Micah spent over 3 months of his first 10 months of life in the hospital.

It's probably time to talk to Nathan about it. But honestly, I've been waiting for him to ask. I figure it's only a matter of time before he realizes that Matthew is younger than Micah but Matthew is progressing faster physically (and eating table food, etc.). Nathan is a pretty curious little guy and does not have an introverted bone in his body, so if he wonders about something, he's going to ask. Is that bad? Anyone else out there with a 4yr old who knows about his/her sibling's diagnosis? How did you start talking about it?

Regarding resources... my first step is usually to visit Woodbine House publishers (specializing in books on disabilities). I've heard that the book "The Best Worst Brother" is good, along with "We'll Paint the Octopus Red." Another resource we plan to plug into in the future is that there are some organizations that focus on siblings of individuals with disabilities. But I think those start around age 6.

Running out of questions from readers. Anything else you wanted to know about Down syndrome but were afraid to ask?

Day 5 of 31 for 21 - Disposition

(This is a photo from April, but I remembered it after the Micah's hand post and thought it was a better shot of what his hand looks like. It also shows off his single transverse palmar crease, another occasional feature of Down syndrome. And the photo also shows how adorable his hair is... do you think it's screaming for a short mohawk?)

Jodi's question: "It seems like most ds kids/people [*see end of post] I meet have a sweet disposition and that they're very open and trusting. Have you noticed that and what do you think is behind that?"

This one is a bit more difficult for me to answer. I'm certain to offend someone in my answer. It's close to being a touchy subject for some in the Down syndrome community. But the way Jodi asked the question doesn't bother me. The annoying phrase is, "Oh, they're all so loving/happy/sweet/etc." which is quite a generalization. Jodi's personal experience is what she's asking about. I'm not sure I can answer it well, though. Because it will be my personal opinion, not based on medical facts (which I'm much better at!).

So... in my opinion... (and it is just that, folks... an opinion), I think it's because many individuals with Down syndrome do not feel confined by "social norms" as much as the general population. They know what love means and they express it when they feel like it. There are different types of intelligence. I wish I had time to research that right now, but alas... I'm tired. I know I read some sort of research lately on this (any of my fellow bloggers remember who posted that?).

Honestly, Jodi, I haven't spent much time around teens or adults with Down syndrome, so I am not sure how to answer your question well. But my opinion about your experience as it relates to individuals with Down syndrome being trusting... I think that's because it's YOU that they're trusting. I've heard that many individuals with Down syndrome are perceptive, so they might just realize you're a person worth trusting. :-)

* Educational opportunity - I'd like to lovingly request "people-first language." I might do a post on that later this month. But since it's here, I thought I'd add it now. It's a bit more cumbersome to say, but the prefered language is "individual/kid/baby with Down syndrome" rather than "Down syndrome individual/kid/baby." Think of it this way... you wouldn't refer to someone's child as their "leukemia kid." I think the same goes for autism, though I don't know if the autism community has as big of a push for people-first language as the Down syndrome community does.

Stay tuned for tomorrow's post on educating Nathan about Down syndrome (it will be a short post!).
Please keep the questions coming!

Day 4 of 31 for 21 - Wedding video

No... not OUR wedding video. Shout out to my Nashville friends who will recognize the venue: Scarritt-Bennett Chapel. Here's a video of a couple, both of whom have Down syndrome, and were recently married. They met when Josh was 2 and Bernadette was 5. Major tears flowing as I ponder the possibility of this type of day ever happening for my sweet Micah.
http://andycamphotovideo.com/scarritt-bennett/josh-bernadettes-wedding-at-vanderbilts-scarritt-bennett-chapel-in-nashville/

(I'll field another question tomorrow. Keep them coming!)

Day 3 of 31 for 21 - Teeth and Hypotonia

Amy asked the following:

"I have a friend here whose daughter has DS, and she ended up with a couple of teeth (bottom middle two) that didn't develop and come in. Does Micah have any tooth issues related to DS?Also, can you tell us about how he's really flexible-I mean limber?"



Yes, Micah has some funny teeth things. First, he only had 2 teeth until he was 19months old (he didn't have any until... hm... wish I had titled a blog posting "teeth"... I'll have to get back to you on when he got his first tooth). He does *almost* have 2 more. And oddly, the two that are coming in are his first upper molars. I had thought the were eye teeth (picture dracula with just 2 bottom teeth and upper fangs). But there's more tooth coming through the gum now so apparently they're molars. I had heard that most kids with Down syndrome (Ds) get their teeth later than average and that they sometimes come in weird order. That has been the case for Micah.



Yes, Micah is insanely flexible. It's due to hypotonia (low muscle tone), and it's very common with Ds. I've actually seen photos of some kids who are pancaked over and sleeping (think about sitting with your legs out and slightly parted, stretching out, putting your belly on the floor, and falling asleep). Weird, huh? Micah has never fallen asleep that way. But he will sometimes flop over like that and pull his legs all the way around so that he's lying on his tummy. And vice versa (getting up to sitting from his stomach, he will swing his legs around... it's definitely "cheating" and we try to stop him when he does that). Hypotonia is actually one of the first indicators of Ds in an infant when there wasn't a prenatal diagnosis (if I think about it later this month, I'll post a list of other indicators). Babies with Ds sometimes come out "floppy" and don't make fists and curl up in a ball like a typical newborn. Most babies curl up their bodies and bend their legs to get their toes in their mouths. Not Micah. He grabs his foot and pulls it straight up to his face without bending his leg.



Hypotonia can also cause feeding issues, speech delays, and digestive difficulties. Lucky Micah... he gets all of those. After we move to MN, Micah will need to get fitted for orthotics due to his weak ankle muscles. I'm hoping they will help him feel more comfortable bearing his weight while standing. As a side note, low muscle tone does not equate with muscle weakness: the muscles can be made stronger, but they will most likely always have low tone.

Sorry I don't have a good picture to post of Micah's flexibility. I'll try to find one later.

Thanks for asking, Amy. I'll be addressing Jodi's question tomorrow. Anyone else care to ask something?

Micah's hand

Yay! My first Micah question. Today is Day 2 of the 31 for 21 challenge. Today's post is a response to Paige's question about Micah's hand: "i've wondered about Micah's hand. Does he have a unique hand? it's hard to see from the pics - & if so, is it a result of ds?"

Yes, Micah does have a unique left hand. It's a result of amniotic band syndrome (ABS) and has nothing to do with Down syndrome. Basically, the theory is that his fingers got "caught" in the amniotic sac while it was forming. There are a few different theories about how this happens, but no one knows for certain. Depending on which appendage gets caught, it can cause a miscarriage. Fortunately for Micah, it was just his fingers. All four of his fingers end before the first joint. His thumb is unaffected.

So... rewinding to the day Micah was born... We didn't know ahead of time about his hand. I had countless ultrasounds. Micah always appeared to have his hands in the boxing position. Now we know it wasn't due to his left hand being clenched. Anyway, Micah was born via c-section (thankfully... long story for another time perhaps). I only briefly saw him bundled in a blanket before he was taken to the NICU. Because I had an emergency c-section, I had a spinal (compared to a standard epidural) and it takes a bit longer to be able to move afterwards so I wasn't allowed to go see Micah in the NICU. The NICU transport nurse had him packed for transport to Milwaukee and they stopped by my room on the way out (they wouldn't let me take him out because he was bundled for transport. I still hadn't held him, and wouldn't have the opportunity to do so for a few days until I was released from the hospital and able to go to Milwaukee). This was the first time I saw his hand and I started to cry. I was so sad that there was yet another medical issue for this little baby to overcome. It just didn't seem fair.

Micah has been seeing a plastic surgeon who specializes in congenital hand deformities. His last x-ray (I think that was in June?) showed that there is not enough soft tissue above the bone in his pointer finger to do a bone graft (from his toe... crazy, huh?), but it could be done on his middle and ring fingers. But the best way to lengthen his fingers is going to be a surgical procedure when he is about 4 years old. They would insert pins that would have screws on the outside that you would turn every day. Yuck. We have plenty of time to make that decision so it's on the back back back burner. If we did proceed with something like this, it would definitely be for functional reasons, not for appearance. It would not give him joints in his fingers or make them "normal" length. But it might help him to do more things. Honestly, this weighs on me a bit because we do hope that Micah is able to work and live independently someday, and manual labor might end up being his ticket to that life.

Meanwhile, Micah uses his hand very well. His therapists often note that he does not favor his right hand over his left very often. And that makes sense because he doesn't know any different. It's not like he knew what it was like to have long fingers on his left hand and then lost the digits. It's amazing how his body compensates.

I've grown to love that sweet little left hand of Micah's. I think it's adorable. Thanks for asking, Paige.

Anyone else have a question about Down syndrome or Micah?

It's 31 for 21 time!!!

Welcome to Down Syndrome Awareness Month. In an attempt to increase awareness, I'm going to try to blog every day this month (a task that might be beyond reach given our upcoming move to MN, but I'll try). I may not blog about DS every day, but I'll try to put a post out there.

Let's start with a request for questions. Is there anything you've wondered about Down syndrome (or Micah specifically) but were afraid to ask? I'll try to get to questions throughout the month. You can post questions anonymously. As long as it's not completely disrespectful or something, I'll answer.

I tried 31 for 21 last October too. Given the circumstances, I was pretty successful (I posted 24 of 31 days). Micah was in the hospital the first 10 days of the month (after being admitted on 9/28/08 for what was eventually determined to be a GI virus). I'm thrilled that it's been almost a full year since Micah had an overnight in the hospital (he had his little boy surgery in December and didn't have to stay!).

Ooo, one more question for y'all to contribute to the postings... Are you giving your kids (DS or not) the seasonal flu vaccine and/or the H1N1 vaccine?

3 ounces!

Micah ate about 3 ounces of baby food tonight in one sitting. This is a major accomplishment for him. Even two weeks ago, about 75% of the food was pushed out of his mouth with his tongue. Now it's less than 25%. I think his tongue is starting to be involved in the eating process. Wahoo! One more step toward getting rid of the feeding tube.

Not that feeding him is easy. He won't take it from Mark yet. It takes 5-10 minutes for him to decide that he will actually participate in the eating adventure. And if the routine is broken by me leaving the table or something, it takes another 5 minutes to get him started again. But it's huge progress! He even signed "eat" and "more" in sequence: his first sentence!

Other fun milestones... he has decided he likes to try helping me unload the dishwasher. And he helped Nathan play with his new birthday toys (which Nathan was not incredibly excited about). Micah should be wearing his "I Did It" t-shirt today!

(this is my second post today... scroll down and comment on my Renting Debate if you have time)

The Renting Debate

We're considering renting out our house here instead of selling it (at a loss) to Mark's employer. There's a high likelihood that Mark will be transfered back here eventually and then we wouldn't have to go house hunting again when we get back here. And we REALLY like our house and the neighborhood.

We've never been "landlords" before. Readers, have any of you been through this? Any good experiences? I keep hearing of not-so-good experiences with tenants.

And to my local friends... do you know of a family looking for a house to rent?

All of this makes me just a bit nervous. I don't know what direction our economy is heading. Real estate used to be an investment, but now I see it as more of an expense. So why would we own TWO houses is an uncertain economy?... I'm open to comments on both sides.

Moving Update

I realized it's been a while since I updated the blog about our move. I tend to do brief updates on Facebook frequently and have neglected the blog lately.

I posted over a month ago that we had a house. We then proceeded to cancel that contract after the inspection and we've been searching ever since. Mark saw a few houses each week after work. I went back 2 weeks ago for 2 days and we didn't find anything compelling. Our realtor sent an email to her fellow agents asking for pending listings. There is a house that the sellers were planning on listing in the spring and they agreed to show the house to Mark. Lo and behold, he likes the house and decided that we should make an offer on it. We now have a contract on another house.

Meanwhile, the rest of us are still here in NE Wisconsin. Mark flies back and forth every weekend and stays in a hotel during the week. We've decided to move into a furnished apartment in October for about 6 weeks before closing on our new house. It will be great to start getting involved in life there (church, Bible study, preschool for Nathan, etc.). But we're missing the Down Syndrome Walk for Awareness in St. Paul this weekend.

Tomorrow is Micah's IFSP meeting with his therapists. I haven't had enough time to dread this one so maybe it won't be so bad. Really, it's helpful to see progress toward goals. But the evaluations are really hard (i.e. he's functioning at 8mos in gross motor skills, 10mos cognitively, etc.).

This past weekend was super busy with lots of family activities surrounding Mark's parents' 50th wedding anniversary. Pictures to follow soon.

Eyes

Did you see the photos of Matthew I posted last night? (check out the previous post below if you haven't). Do you think he looks like Nathan?

Here are some photos of Nathan at about the same age as Matthew is right now.Ah, those were the days... the days before I needed to highlight my hair. Speaking of which, can I charge my newly-required highlighting expense to the boys' college funds? I mean, they caused it, right? Or is it due to moving up North? Or a delayed reaction to no longer having a convertible (not that I had one, really... it was MARK'S baby before the babies).

And just for kicks... here are some pics of Matthew wearing the same outfit (which he outgrew 3 months ago).

(note drool on bottom lip)

Wordless Wednesday

Micah did it!

Micah did it, and got the t-shirt. :-)

Thanks to Jennifer at Three's a Charm, Micah has a new t-shirt to show off. If you feel led, please buy an "I Did It" shirt for your little one. Jennifer is using the proceeds to buy books for parents who have received a Down syndrome diagnosis for their baby. Inside the front cover, she's putting a note saying who gave them the book and the blog address of that person. So hopefully one of these days I'll hear from someone who came to visit our blog and read about Micah! If you don't have a blog, or if you feel led, when you buy the shirt, ask Jennifer to put a blog address in the front cover anyway, whether it's our blog or another blog of a child with a little something extra.

And doesn't he look studly in the black shirt and jeans?

You might ask, "What did he do?" Well, I've mentioned some of it. But I thought it was a good time to share what Micah is doing these days.

1. Crawling... on all fours consistently (unless he's really tired and resorts to the army crawl, but that's happening less often these days).

2. Signing - Micah can do the following signs: more, ball, car, bus, eat and signing time (to request his video every morning). Also, in the photo above where it looks like he's signing "more," he's really doing the Itsy Bitsy Spider.

3. Verbal - Micah only says Dada consistently (which makes Mark's heart melt). He also yells loudly when he wants Nathan's attention. He's starting to click his tongue, which is great for building up strength.

4. Eating - Micah is now opening his mouth for baby food at the table. This is huge, because it means he doesn't have a total oral aversion. I'm sure part of it is due to him mimicking his baby brother (you know... the little piggy). Micah's tongue functions like a newborn, though, in that it doesn't draw food to the back, so most of the food is pushed out by his tongue. But we're working on tongue strength with him.

5. G-tube feeds - Micah now receives EVERYTHING through his G-tube so today we went to the pediatrician's office and had his GJ-tube button removed and replaced with a G-tube button. Praise God! No more trips to interventional radiology in Milwaukee every time he has a tube issue. It's taken a long time to get here. He's still on mostly continuous feeds (compared to bolus feeds, which is more like meals), so we still have to take the pump everywhere. But moving to all G-tube feeds is a major step and we definitely don't take it for granted. One of these days I'll post some photos of the difference between the tubes.

(For those of you astute blog readers, yes, he did get new glasses. I was planning to buy him some Specs4Us anyway, and by leaving his other glasses on top of the car, I expedited the purchase).

OT - I have to add these photos of Matthew because I'll forget to post them later. I call this one:

"I'm so hungry, I could eat a train!"

NDSC

Okay, who is going to organize the bloggers for next year's National Down Syndrome Congress Convention? Why do I care? Because we're going! Yay! My mom is coming along too. It's a win-win, really. She'll get to experience Disney with her grandsons the first time they go. And we'll get some much-needed help with *hopefully* two toddlers and a crazy 4-yr-old.

So... who else is going? We'll be there from 7/14-19. If you're thinking of going, click here to register. Hope to see you there!

Wordless Wednesday

I think this is Micah's vision of heaven

Matthew with Granddad

A farewell dinner out with Melanie, Debbie, Michelle, me, Christine, and Danielle. We all have little ones with an extra chromosome. I'm going to miss these women and the support they have provided for us. And I'll very much miss their sweet little ones.

(see below for 2 other posts done today)

Cardiology update

Micah had his last visit with his cardiologist, Dr. S, today. Micah was considered a patient of hers before he was even born. She met Micah in the NICU and has worked with him ever since then. We will definitely miss Dr. S and her whole staff.

I must say that today's echo was MUCH more difficult than his previous ones as he's a bit more mobile and opinionated than before. His valve leakage has not improved (still considered to be "moderate"), so she's increasing his medication and did tell me that he will likely be on heart meds for the rest of his life. I guess that's a small price to pay for a heart that works, huh?

Micah had no interest in smiling for a photo op with Dr. S. By this time he had been awake for over 5 hours. And it's not an especially flattering photo of Dr. S either. But it is what it is.