Here's Micah walking around, jabbering about who knows what! He's just recently started babbling like this, it's too fun!
Monday, December 27, 2010
Thursday, December 23, 2010
Saturday, November 27, 2010
Thursday, November 18, 2010
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.
Friday, November 12, 2010
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!
Friday, November 5, 2010
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.
Sunday, October 31, 2010
Thursday, October 21, 2010
Wednesday, October 20, 2010
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!
Tuesday, October 19, 2010
Tuesday, October 12, 2010
(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.
Sunday, October 10, 2010
Saturday, October 9, 2010
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!
Tuesday, October 5, 2010
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.
Friday, September 24, 2010
(I hope you're not eating right now)
Pay homage to the porcelain god
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.
Wednesday, September 22, 2010
Hope all of you are well.
Thursday, September 16, 2010
Wednesday, September 15, 2010
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. :)
Tuesday, September 14, 2010
Thanks for voting!
Monday, September 6, 2010
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!
Tuesday, August 31, 2010
Saturday, August 21, 2010
Monday, August 16, 2010
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!
Wednesday, August 4, 2010
Tuesday, August 3, 2010
Lets see, we were here
Aug 2-Oct. 30th
and now, August.
But the good news is, if all goes well, we don't have to be back till November! Three months!
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.
Monday, August 2, 2010
Sunday, July 25, 2010
Tuesday, July 20, 2010
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!
Saturday, July 10, 2010
Tuesday, July 6, 2010
Sunday, July 4, 2010
Wednesday, June 23, 2010
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.
Tuesday, June 22, 2010
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.