Here's Micah walking around, jabbering about who knows what! He's just recently started babbling like this, it's too fun!

Merry Christmas, Part 1

I don't have a lot of time, or a lot of pictures (I forgot to upload days 2 and 3 of Christmas, which had some great pictures, but here's a few in the mean time). We had a nice Christmas, and Micah was sort of able to open presents, but didn't really seem to understand why he got a box. And another box. LOL :) The kid got spoiled rotten though! Now we have to figure out where to put everything! I can't wait to put up the rest of the pictures, with him in his great Christmas outfit, complete with Christmas vest and tie. We hope all of you had a Merry Christmas!

So, it's been awhile!

We've been staying busy lately! We've gone to Christmas parties, and seen Santa, of whom he wasn't a big fan. So, Micah and I both got to sit on Santas lap :) We return to Cincy in 3 1/2 weeks, but just for a day or maybe overnight depending on the weather.

Happy Birthday Travis!

I'm a Walking Man...

No news is...

Good news! We're just hanging out, trying to stay warm and avoid "the crud". So far, so good! Micah goes on house arrest after today for a few weeks. Better that than sick! Micah's currently enjoying free babysitting by grandma while I chill for awhile. No complaints! He's a walkin man now. He hasn't seen his PT in 3 weeks, boy will she be shocked! He can easily walk about 6 feet, and has walked as much as 15' once! The race is on....

One year and one surprise later...

As of tomorrow, we will be celebrating Micah's 1 year homecoming from the hospital. Can you believe it? Thinking back to his first birthday,. that's essentially how long he was in the hospital. It's amazing how long that seems, even though many families spend two, three, four times + as long.

So, as if that wasn't enough to be excited about...

He said MA!

That's right, Micah "In his own time" Hartman.. said Ma! 14 months, 2 weeks and a few odd days later, he finally said ma! This is his first real sound, like a baby would say "ma" or "da" or "ba".

The boy knows how to make his mama cry. And proud, very proud.

Micah's happenings...

Micah has taken his first steps! :) Go Micah! He's taken a few more, but he's just not a fan of the ideeym (that's Micah saying hi). idea... that he isn't hanging on to anyone. I think he'll catch on eventually. He's always going, so I think when he realizes he can go faster this way, he'll do it.

We're also starting him on a new diet. A lot of kids who vomit a lot on canned formulas (like pediasure) do better on this, but it took a few weeks to get the okay from the powers that be. So, this is what we mix together. It's a basic recipe, since all the foods are baby foods. Eventually you can switch to regular food with a very expensive blender.
Micah's Blenderized Diet
2.5 oz orange veggie
2.5 oz fruit
2.5 oz baby food meat
1/4 cup baby rice cereal
4 oz whole milk
1 tsp (eventually 1 tbsp) olive oil.

Needless to say it doesn't smell the best (baby beef=major hurling potential). But as you can imagine, the body should be able to digest real food better than pediasure, which uses a LOT of sugar to get the calorie density needed. So, you blend this all together and push it through his feeding tube. We'll do this for his day time feeding (12 oz), but the pediasure at night (15 oz). Let's hope this works out. A LOT of people really believe in this, and find their kids can take more of this at a time than of a commercial formula. As you can tell, he doesn't get a lot during the day. He's up to getting 4 oz of formula every 4 hours. Ridiculous, I know. It's taken probably 2 months to go from 3 .5 oz to 4. I'd like to get my hopes up on this, but I know better. Wish us luck!

If you read anything today, it should be this.

http://ainsleyrae.blogspot.com/2010/11/day-to-truly-celebrate.html

I couldn't have said it better myself. Please understand, we're not trying to be political (necessarily), but like everyone says... Vote for your values... Well, health care for my child has now come to the top of my values list. What's your annual limit on your insurance? What's your lifetime maximum? Many people don't even know, because it's not something they have to think about. Micah's first year came to over 3/4 of a million dollars... his first year! In my opinion, the overhaul of health care is a good start. It is not OKAY to be able to drop children from a policy! It's not okay to deny them coverage because they cost too much! It's ridiculous!

Oh, this was a long time coming. If you don't like the healthcare overhaul, pick and choose what you don't like.. Some of us literally can't afford to not have it.

Trick or Treat

Sorry for the sideways picture!

More fun!

We visited a really neat VERY old school today. It was called Eleutherian (sp?) College, a school that educated ALL students in the pre-Civil war era. It was a beautiful building that somehow quietly educated slaves and whites, because they believed everyone deserved to be educated. It was a K-12 school, but called a college because it was apparently on "College Hill". It was started in the 1850s, and still stands today. A wonderful older gentleman gave us a great tour and told us a lot about the work of the Underground Railroad in Southern Indiana. It was a totally dorky thing to do, but it was great!

We roamed the trails at the Clifty Fall(less) State Park. There was hardly a drop of water, let alone "Falls" Bummer. It was neat anyway. Travis had Micah, and I had Micah's backpack. He needs to learn to walk and take his own stuff. He's heavy, and his med supplies are heavy! We also ate on the Ohio River... Literally! What fun!

I've gotten quite the lesson on patience this vacation. Micah takes about an hour to eat, and an hour to wait so he doesn't puke on daddy's head when he goes in the backpack. :) So, we go out for two hours, come back for two hours. It's not really working, because he's not getting as much as he should but we're trying! Picture uploads are down (I saw the 5pm, but not the Pacific Time, so that's probably, what 8pm here? who knows). I have some cute pics to show!

Now THIS is vacation

If this isn't chillin' with dad, I don't know what is. :)

In other news, the trip to Cincinnati wasn't the most productive ever. Orthopedics told us that his shoulder problems aren't skeletal in nature. I'm kinda shocked, really. But, it helps us narrow down that it's probably something related to his first big surgery, damage to part of the 11th craniofacial nerve. He seems to have damage to part of it, but not both of the parts (unless I'm not sure what I'm looking for). Well, if it's nerve damage... It is what it is. He seems to be functioning well enough.

His upper GI on his stomach showed exactly what I thought it would. NOTHING. Everything looks normal, and the wrap on his stomach is supposedly working fine. It didn't seem fine when he was vomiting today. Ugh. Again, I think we're at a point where it is what it is. He's still growing and that's the most important thing.

Clinic went as expected. The mass has grown, not tons, but it's growing. The doc wants the surgery in late winter/early spring. He's planning on starting up by the temple and trying to get behind his ear as well. Still looking at booking the OR for 4-5 hours, although that won't get it all for sure.

But now, we're on vacation. And we're chillin.

Cutest kid in the universe..

A slideshow of Micah's one year pictures can be seen at: www.eberkeypilephotography.com/Hartman.aspx
(hopefully this works!) Thank you to Erin for doing his pictures, you did a great job!
If you'd like a print, let me know in the next two weeks send me an email or text with what number you want (from the website) and what size you want.
Thanks!

Micah's video

There is a better video of Micah drinking on Brittany or my facebook page.

Brenda

Kim, Lisa, Allison and Erin, this ones for you!!

Well, here ya go!! This is part of a video of Micahs, best "drinking session! Ok, so it was only a 1/4 of a ounce, including spillage. But thats far and away the best he's done.

Hooray! There are time that we thought he'd NEVER do these things!

What a fun day!

Micah is getting his 1 year pictures done today (so what if it's 5 weeks late, I'm not going to tell him, and neither will you! :) ) Thanks to Erin for doing the pictures for Micah! http://eberkeypilephotography.com
In other news, we're getting ready for our next Cincy trip (in less than two weeks), which is just 1 power packed day of appointments. Literally, 8:30-10:30am,(travel from outpatient campus to main hospital, eat lunch) 1:00-1:30, and 2:00-3:00 (at least!) Then, we're off on our mini-cation! It looks like the leaves will be just great for us in Southern Indiana.
Micah's been signing up a storm here lately... His repitoire includes "hi, bye, more, eat, mom, dad, grandma (new!) and hat (sometimes! New!)" Not to bad for 13 months! At the moment, he's got mom, dad and hat a little mixed up. He keeps trying to call me "dad" and doesn't appreciate when I try to correct him. Uh oh! His speech therapist thinks he can handle learning two signs a week! Whoa! He's also been very chatty, especially at church in the evening.
Can't wait to show you his pictures from this afternoon, what a lovely day at a lovely place (camp!)
We enjoyed a nice week of services by Bro. Brubaker, who did an especially nice job with the youth service.

He's crawling!

`

Synonyms for vomit.

So, I feel like I'm always talking about vomit to someone or another. So, I'd like to compile a list of synonyms for vomit.
Puke
Hurl
Blow chunks
(I hope you're not eating right now)
Pay homage to the porcelain god
Barf
Spew
Upchuck
Regurgitate
Throw up

That's pretty well sums up Micah's days. (Okay, so it's only like 3 times a day, but the almost puking is like, every 15 minutes).

Oh, and the post below, forget all that. Not ONE hour passed by and they called and had to reschedule his orthopaedics appt. ARRRGH. So, we rescheduled our hotel in that town, our other appt and our entire vacation. Now we just have to see if we can reschedule our dinner with friends (if I forget, remind me Sarah). And our borrowing of the baby backpack-thingy. (I'm going straight to FB to ask)...

Oh, and if you'd like something to do, the Camp Mack Festival is October 2nd, from 9-about 4pm. Fun stuff for the kids (and you), good food, can't beat it! And come vote for the Blue River scarecrow, which is going to (hopefully) resemble the painting "American Gothic!" Each vote is a quarter, with proceeds going to Camp! Questions, ask me?

Now that I'm done with my shameless promoting, I hope you all have a lovely day.

A case of the ickies.

Micah currently has a case of the (who knows what kind of) ickies. And let me tell you, ickies with a trach are PARTICULARLY fun. The first four hours after he gets up are suction-fest, snot fest, drool fest. We hope it's just more teething fun. Or is it acid reflux? Granulation tissue? Allergies? I hate not knowing. Speaking of, we added orthopaedics to the list of our Cincinnati friends. I really don't want to go there, but I also don't want to not go there, either. Hopefully they can give us some insight into what's going on with his shoulder, and maybe his head. Because Cincy is fabulous, they got us in the day we'll already be down there, although at another campus, which is a new one! It's outside the city, on our way into the city so no complaints! We'll go to that town the night before, (8:15 appt) hopefully eat dinner with our friends, the Petersons, go to that appointment, then head to the main hospital for our other appt! Then, we're off on our mini-cation to Clifty Falls state park! Fun! (This is no time soon, it's in November).
Hope all of you are well.

So you think you can dance?

Check out these moves :)

Looking and voting..

I'm looking for someone... Her name is Brenda G., she's the ultrasound tech that did Micah's 24 week ultrasound. So, if you're out there, send me an email please! tbhartman@hotmail.com or if you know how to get ahold of her, have her email me. Thanks!

If you're voting for Micah, please keep doing it. He held steady at 23 out of over 600 entries! What are the odds? So if you have a minute, please vote. :)

Cutest Kid Contest!

Well, as many of you already know, Micah's in a cutest kid contest at Parents Magazine. He's currently in 23rd place out of over 600! You can vote once a day by clicking the link below, clicking vote, and writing in the security code. You can vote til the 19th. The winner, albeit it's a long shot, wins $1,000, which would of course be very nice right now (or anytime :))
http://photos.parents.com/category/vote/photo/488540?esrc=nwphotofaves5
Thanks for voting!

If this isn't the cutest picture ever... This is Micah at the neighbors square dance this weekend. Here are a few of our other adventures over the least week or two.
On his birthday we got him to eat about 6-8 bites of a jamocha shake (that's about 3x as much as he eats of anything). We went to the lake and the park, as well as the zoo and the neighbors square dance!

I'm ONE!

The party started Saturday, and we're still partying today! And just in time for his birthday, he learned how to pull himself up to standing on furniture! Big guy!

We have really enjoyed this summer. It's been nice to just go outside and sit on the grass, go to the splash pad, or just hang out inside.

I bought Micah his first pair of "big boy" PJ's.. I think they'll have to wait at least another month or so!

Hard to believe...

It's hard to believe we get a 3 month break from Cincinnati. What a nice, nice thing. Then, if all goes well, we'll get another 3 month break before his big surgery. For some reason, we're both finding peace in doing it in February, despite it being cold and flu season. As Travis and I pondered yesterday, the next big surgery is going to kick off what's likely to be a very busy medical year, so we'll take the break while we can get it.

Micah had a busy day yesterday, and is so pooped today it's not funny. He only took two half hour naps yesterday, then slept almost 11 hours straight overnight. Needless to say his diaper didn't contain his "abilities" (as Heathcliff Huxtable would say). I can't say I minded him sleeping that long!

So, about 9:30 this morning, I heard fire trucks going down the road (which isn't too common where we live). Looked out at the corner by our house, and saw a handful of them sitting out there. Went out and, whoa! Gas leak! It was bad enough that I packed Micah up and left. Nothing like a road trip!

He was in a swallowy mood!

He did great on his swallow study! They gave him liquids by mouth for the first time, and he did just fine! We were so surprised! He is really careful with what they give him, which is perfect for him! The doctor said he is really protecting his airway, which is so refreshing after hearing for so many months that he wasn't protecting his airway at all!

He is really slow getting the food swallowed, it's almost methodical how he moves the food around and swallows just a little bit at a time!

So we're cleared to give him liquid by the baby spoonful! He's probably not ready for a sippy cup yet, but we'll take whatever we can get! Hooray!

Off to his Video Swallow Study... let's hope he's in a swallowy mood! *crosses fingers*
Then we're off!

A year ago today...

A year ago today I was admitted to the University Hospital here in Cincinnati with Micah. At the time he still had 8 weeks to his due date, and the doctors were darn sure they didn't want him coming anytime soon. They drugged me up with every medicine they could find, only to figure out he was basically saying "psych"! Even though they kept me for 17 days, it wasn't too bad. The doctors wondered (out loud, multiple times) why I wasn't all that upset... I still don't know! I guess I was convinced that the Doctors knew what they were doing, and that Micah would be okay. Anyways, it's been a looooong year... with many more complications than they really anticipated (or at least they told us about) but Micah's here, and he's doing pretty well. Kind of fitting though that a year later, we're here again.

Lets see, we were here
Aug 2-Oct. 30th
in December
January
March
April (twice)
June
and now, August.

But the good news is, if all goes well, we don't have to be back till November! Three months!

Meh.

Haha, mom, it's passey muir valve.

Either way, we didn't get one. Darn.

They want to schedule his surgery for sometime in the next 3-12 months. At our convienence, whatever that means! I hate that! Dr. changed his mind, probably not going to do the whole surgeryat once. Too long. Looking at booking the OR for 4-5 hours. (As opposed to 7-8 hours). It looks like we'll be down here for a week and a half, give or take. It seems like the doctor would prefer to do it in 3-6 month time span.

First we have to get his nutrition in order, which has been quite the task. One of the other docs we see was really frustrated with his feeding situation (hooray!) and is going to talk to his GI surgeon about adding some medication to help with his GI motility (how he moves things out of his tummy). Luckily everyone is on board with not switching to type of tube where he has to be on continuous feeds all the time. Ew. No one wants that.

Speaking of continuous feedings, I forgot to pack an extra feeding pump bag. I've never forgotten ANYTHING (short of dish soap) on a trip to Cincy. Of course, the bag we had broke.. or the pump is broke, hard to say (I think it's the bag). Either way, I don't think I can get one from the hospital since it's after hours. I'm going to try to pull every other string i know. He gets fed continuously at night for 10 hours, and it would really stink to do that manually, but it's my fault for being a numbskull.

Numbskull, numbskull, numbskull. Meh.

Grandma's Boy!

Micah having it his way! Whats new! Celebrating with Grandpa for his birthday.

Looks so big sitting up in the high chair.

Please pray for his video swallow study on Wednesday. Hopefully, he will be cleared to have liquids. They will be checking his mass on Tuesday. We are praying that it shows some improvement from last month. They are looking foward to him getting a Passive Mural Valve to help his vocalize. But his airway needs to come back to center for this to happen.

His eating has gotten a little better, only throwing up once or twice a day now.

I am sure Britt will be posting more after they see the Doctors.

Brenda

Would you?

Would you pray Micah will keep his food down? We're getting into big trouble because he's always been at the bare minimum of fluid/nutrition intake, and he's been puking big time. I think he's puked 4 times already today. His pediatrician is out of ideas, and so we called his GI surgeon. He's going to (re) run a test to try to figure out what's going on. If we can't get it to improve our options are less than stellar (I won't bore you with the details). We're going to pick the brain of his dietician tomorrow and pick the brain of the true pro's on the trach message boards.

See Micah belly crawl!

You might note the item that inspired him to start moving... His suction kit. No toy, whether it talks, shakes, lights up or anything, is as inspiring as a piece of plastic inside another piece of plastic with a paper cover on top. Nothing.

We're having a bit of a rough week... the puking has returned. It seems to do that every 6 weeks or so. After a day of his "dreamsicle" (half formula with half orange pedialyte), he's keeping more food down. Before all this, he was gaining weight really well, so not sure what this will do.

In two weeks, we're headed back to Cincy. Just two days this time... clinic and a video swallow study. No anesthesia, nothing! Piece of cake! If only the hospital would transport itself a few hours closer!

Update...

Just an update, since it's been awhile. It's been about 2 1/2 weeks since his sclerotherapy, and we're not seeing the results we were hoping for. In fact, we haven't seen any improvement. It's still early, so we'll see in the next two-three weeks if it gets any better. We go back to Cincy for a clinic visit on 8/3. We're hoping to get a video swallow study while we are down there, but haven't got that scheduled yet. If they can perform the test, it'll help us tell what consistencies of food he can have... but he's never cooperated on his other swallow studies, so we'll see if this is any better.

Fun in the sun!

We've been to the splash pad, the pool and the flea market! Busy boy!

Micah takes a Dip :)

Micah seems to enjoy the water just like his Mommy!

He's out

Micah's out and he's doing fine. He's been pretty unhappy, but he's asleep now.

Dr. E went first in surgery. They were planning a scope and trimming his epiglottis. They got in and found out that the mass had expanded a lot and was displacing his upper airway. (The rapid expansion of the mass is likely because of the cold he had a few weeks ago.. and this is how it may always be.) The malformation distorted the upper airway anatomy and they decided it wasn't a good time to work on his epiglottis. That part went pretty quickly. Unfortunately the mass expanded a LOT and is really affecting the floor of his mouth now. It's pushing his tongue up. All along we were hoping he was just learning how to use his tongue and that's why it seemed to be moving more. He came out and told us what was happening while Dr. P got started. Dr. P was unable to do any sclerotherapy in the area of his temple and behind his ear. The tissue is too dense... the first time we've heard that. He was able to drain and inject some areas under his chin, which is the most important place. He is hoping for significant results, including the floor of his mouth. They also told us the area of his esophagus responded very well to the sclero last time, they didn't need to do any more work. They did as much as they could, and are going to try steroids to see if that'll reduce the swelling and help his airway get closer to normal. Eventually the plan is to get his tonsils out, just because they're in the way.
Unfortunately, with sclero not working in about 2/3 of his mass, surgery is our only option. The original hope was to wait to age 2, but now the plan is 1 1/2 because it might not be able to wait. Dr. E said it'll likely be a 6-7 hour major surgery. Ugh. They want his nerves to develop as much as possible before going ahead with surgery.
Of course, I (Brittany) am bummed. It's mostly not good news... as Dr. E put it, this is a really hard problem to treat. He's still hopeful to be trach free by age 5-6. I made Dr. E sad, because he's not used to me getting that frustrated. We'll just keep plugging away... They want us back for a clinic visit in a month, and to return for more sclero in a 'few' months.
Even though they didn't do much, we're staying in the night and will most likely get discharged in the AM.
Thanks for your prayers.

Some great zoo pics!

Luckily, the Peterson's took some great pictures for us.... Here's a few.

When we put Ella and Micah near each other, Micah kept trying to grab Ella's face, hair, etc. Hence Ella's "good grief, get me out of here" look, and Micah's austin powers, mwahaha look. They kissed and made up though. Ella likes to give kisses!

The zoo... duh!

I can't believe it. I thought I forgot my camera to the zoo... but I had it with me all along! UGH! I got some great pictures on my cell phone, and the Peterson's got some with their camera, so I'll post them later. We had a really nice time, it was good for Micah and Ella to finally meet! (They've been "friends" since Ella was born 8 days after Micah.) It's a nice zoo! Aside from a little bit of rain, it was great.

Micah's Dr. appt went well. Our doctor is so easy to get along with, and I know I take it for granted! He keeps joking he will watch Micah some night so we can get out (he's married with two daughters). He told Micah he'd take him swimming (up to his neck, of course). He asked Micah if he minded playing with barbies. Anyways, our doctor is just too fun... We got all our questions answered, and it's a go for tomorrow. Most of the procedure is "we'll see" but Dr. E is hoping that the 'sclero' will help a lot more this time... although he was really bummed to see how it's grown in the last two months. They're going to trim his epiglottis (his is really floppy, almost so much that it's shut) He's going to be really conservative because he can always go back and do more. This is the part of the procedure that I worry most about, because Micah will have to work more to protect his airway, but it's necessary to get the trach out. Kind of a catch 22... Can't take the trach out without it, but if he can't recover, the trach won't come out. Ick.

Anyways, surgery is scheduled (key word) for tomorrow at 9:30 am.

A wonderful wedding...

Happy Fathers Day!

(And Micah got his thumb in his mouth for the first time... what a strange thing, I know.. but in my head i'm yelling "Allison, Erin, check this out!)