Orlando photos - Chef Mickey

Welcome to the first of a few posts of photos taken on our trip to Orlando for the NDSC (National Down Syndrome Congress) conference.

We opted for a "breakfast with Mickey" at Chef Mickey (inside Disney's Contemporary Resort).  The food was great!  And the boys (well... two of them, anyway) really enjoyed it.  As I mentioned in last week's post, Micah was not a big fan.

But Oma calmed him down a bit.

Matthew thought this breakfast was pretty great (note... he's signing "please"). We will not harm your stomach by including the photos of him actually trying to SAY "cheese" when he had a mouth full of eggs (which was most of the time he was seated... that kid loves eggs).

Mark was due for a birthday celebration and he got a cupcake.

Micah had a reaction to sunscreen that morning and his eyes puffed up for a few hours.

Nathan was thrilled to meet the characters.  Before the breakfast he told us he didn't want an autograph book, but we figured he would change his mind once he saw the other kids getting autographs.  Good guess, Daddy.

And Matthew?  He just ADORED the characters!

Micah and Logan

It was so great to see the Baeten family in Orlando.  Logan was one of Micah's first play pals when the boys were "little."  Here's a link to a photo of the first time the boys met.  And here are Logan and Micah at the pool in Orlando.

On a separate note... Mark took Micah to his sleep study.  There was no chance Micah was going to let them put electrodes on his head.  So they went with just the respiratory part of the study, which is primarily what they were looking for anyway.  Micah slept very well that night, as did Mark.  Go figure.
(We do not have the results yet.)

Polysomnogram (PSG) this Sunday

Micah goes in for a PSG (polysomnogram, aka "sleep study") this Sunday night.  Ugh.  My child, who screams at the sight of a stethoscope or blood pressure cuff, is supposed to allow some techs to stick a bunch of electrodes on his head and body and have him fall asleep with them on and sleep through the night.  Yeah, right.

Please pray that he is somewhat calm for this.  I almost wonder if it would be better to send Mark with him.  It seems that he grumps more for me than for Mark sometimes.  Also pray that we will have a definitive answer as to whether or not to remove his tonsils (which are obstructing about 80% of his airway, but he's not showing signs of apnea, other than moaning occasionally overnight and waking fairly early in the morning).

Yes, I have pictures from NDSC and lots of information to share.  I hope to post about that soon.  In a nutshell, we learned a lot, met some of our wonderful blogging and Facebook friends, caught up with some "old" friends, and enjoyed the Magic Kingdom (well, *some* of us enjoyed Magic Kingdom).  Okay, maybe I should post at least a couple of pictures.

This is what Micah thought of Mickey Mouse at Breakfast with Mickey

Maybe next time?...

NDSC anyone?

Yes, we'll be there!  Orlando, here we come!  I'm really looking forward to meeting some of my blogging friends IRL (in real life).  And catching up with the Baeten family (we used to live close to them, and Melanie was a great support for me when we learned of Micah's diagnosis since she had walked the path just eight months before us).  Please pray for us on this trip, specifically that Micah would not wig out with all the people and noises... never mind that freakishly large Mouse!  We're also looking forward to seeing some dear friends from our days of living in Orlando.

If you've come to the conclusion that no news is good news, then you're right on target.  Micah has had a few issues since my last update, but nothing significant.  He sees the immunologist today.  Please pray that they have a good phlebotomist.  Micah is a "tough stick" on a good day (he has rolly polly veins, and once they get a vein, they usually don't get enough blood out of one... it's not fun for anyone).  We're hoping that he gets an "all clear" from his septic/toxic shock event from April, i.e. he has no significant immunity issues that would require long-term treatment or mommy paranoia.  I don't know how long it takes to get the bloodwork results back.

On a separate note... I am NOT PLEASED with what is going on with Micah's EI (early intervention) services this summer.  I like to give people the benefit of the doubt and believe that everyone has his best interest in mind, but that is clearly not the case here.  One of the benefits of EI being part of the school systems in the state of Minnesota is that there seems to be a fairly good transition from EI to preschool.  But right now we are experiencing one of the detriments to school-based EI; that is, summer schedules.  Someone has determined that Micah only gets to see a physical therapist ONCE A MONTH over the summer.  Seriously.  My two-and-a-half-year-old who doesn't stand on his own or walk only "qualifies" for once a month?

And it doesn't help that Micah's special ed teacher (who coordinates his services) is transitioning out of the birth-to-two responsibilities and will no longer be working with Micah (by the way... Tim is Micah's absolute favorite and he will miss him tremendously).  Oh, and his OT has moved on to greener pastures so Micah hasn't seen an OT since the first week of JUNE (except for the private OT who sees him for feeding therapy... I tote him up there twice a week and I'd really rather not go more often to pick up PT and OT, nevermind that we're about out of our 30-visit annual maximum with our insurance company).  Rumor has it that someone was quickly hired to take the EI OT's place.  But we have not heard from said therapist yet.  Nice, huh?

I'm doing my best to be patient, but I'm afraid that after our return from Orlando, I'm going to have to set up a time to meet with the director.  This is beyond ridiculous.

And for your viewing enjoyment... a photo of the cheese face!

New SLR for Father's Day

I can't put into words how wonderful my husband is. He's crazy about being a daddy and our boys just adore him. He leads our family well. He looks to God as his source of strength and I am forever grateful for the blessing he is in our lives.

We've considered an SLR camera for a while now. You might remember some of the fantastic photos taken of our boys by our favorite photographer, Heidi. She and her family lived four houses away from us in WI. She came over to take Micah's "newborn" photos after he came home from the NICU. We couldn't take him to a studio due to his CHF (congestive heart failure). So our baby gift from Heidi was a session in our home. And then there were Matthew's newborn pics (that I never posted to MY blog, but you can link to them on Heidi's blog... just go down a few entries).

Anyway... Heidi got a new backup camera and sold us her only-slightly-used backup camera, a Canon EOS 40D. Holy cow! We took some photos with it at the park last night and just on auto mode during dusk (no flash), we could not believe how amazing the pictures are. I reduced the resolution tremendously to post them here, but I think you'll still be impressed.  And this is without any sort of editing, except to reduce the size of the image.

This sand doesn't taste as good as I thought it would...

Just for kicks, here are a couple of videos too.  The first one is a bit over a minute.  Make sure you watch Matthew's landing after he slides down.  The second is very brief.  You might need to replay it to catch the kiss at the beginning (it's only 3 seconds long).  I recommend double-clicking on the video arrow to open a new browser page with youtube because wide-screen doesn't seem to work well when embedded.

Micah and a cracker

Yesterday afternoon, Micah "requested" a cracker.  Matthew was having his snack (a few yummy organic butter crackers).  Micah appeared to be interested and I asked him if he wanted one.  He actually SIGNED cracker and nodded.  I gave him one, thinking it would get thrown across the kitchen floor.  But he licked it... multiple times.  And he held onto that cracker for about 10 minutes.

This is a HUGE deal but I almost didn't post about it.  I think that's because I feel like I haven't done a very good job of explaining Micah's eating issues, so no one outside the feeding tube community and a few select friends and family would understand the significance of the cracker event.  And I've tried to avoid complaining about Micah stuff, especially since the septic/toxic shock incident.  I feel like I should just be grateful that he's alive and deal with the other stuff quietly.

But it's hard for me to talk about Micah's eating issues without crying.  If you haven't been here (aka, you haven't had a child with a complete oral aversion), you can't possibly understand (I don't say that lightly, by the way... I have a lot of empathetic friends and family members who have been incredibly supportive of us in this journey).  As a mom, one of your primary jobs is to feed your baby/child.  I've never been successful in that with Micah.  For those of you who have not been able to nurse your baby and have resorted to bottle-feeding because you HAD to, not because you WANTED to, you have a small glimpse into this world.

I could go back and search my previous posts to give you links for a history of Micah's feeding issues (for those who haven't followed my blog for 2.5 years or who have forgotten how we got here).  But it's probably faster for me to do a brief summary here:

• Duodenal atresia - The first and second portions of Micah's small intestine were not connected.  He had surgery to repair this when he was 2 days old (should have been day 1 but he got bumped).  He was fed TPN (IV nutrition) for over 3 weeks and wasn't allowed to eat for the first 20 days of his life.
• CHF (congestive heart failure) - Micah had a heart defect called AV Canal (atrioventricular canal).  He went into CHF around 4-5 weeks of age as he was learning to eat.  He did not have the energy to eat all the food he needed to survive, so he had a g-tube placed when he was 7 weeks old so that we could bring him home.
• Between the NICU and his OHS (open heart surgery) at 4 months of age, we let Micah eat as much as he could via a bottle and "tubed" the rest.  Most of it was tubed.  Often he wouldn't eat anything.  That was likely due to part of the summary below (Duodenum not functioning properly).
• OHS - Micah had a rough time with his heart surgery.  One of the complications turned out to be a paralyzed left vocal fold, which resulted in an inability to protect his airway when he swallowed.  He decided at that point that he didn't want to eat anymore because it hurt.  This was the start of his oral aversion.
• Duodenum not functioning properly - Before Micah was discharged following his OHS, I "encouraged" them to figure out why he still wasn't tolerating his feeds (docs had been pacifying us with "it will get better after his heart is repaired" for two months).  Micah was screaming in pain and wretching following each feeding.  An upper GI study and endoscopy showed that his duodenum was still dilated and there was a "blind pouch" where food was pooling and kicking back through his pylorus into his stomach.  This resulted in him immediately getting a gj-tube.  He was then fed into his jejunum (2nd part of the small intestine) while his duodenum continued to heal.  He was j-tube fed for over a year.  That was terrible.  Every time that stupid tube got clogged or coiled, we had to take him to Milwaukee (1.5 hours away) so that Interventional Radiology could re-thread it into his intestines.  It was about a month after he was discharged that his new GI doc gave me the reality check phone call.  I think he said something to the effect of, "You need to adjust your expectations."  Right.  Because I was still holding onto the "he will likely have the feeding tube for a few months after OHS as he's gaining strength to take all of his food orally,"  that we heard in the care conference in the NICU as they were telling us why he needed a feeding tube.
• Eventually late last summer, Micah started to allow us to feed him "solids," which was basically stage 2 baby purees.  Forget liquids.  There was no chance he was letting a cup close to his mouth (after 6 months we were told to give up the thought of him taking a bottle because he wouldn't learn to suck).
• Around that time, we were able to move him from continuous feeds to bolus feeds.  Basically, when he was getting fed through his j-tube, he only had 5 hours/day that he was NOT connected to his pump.  "Bolus" feeds are more like meals.
• Though Micah increased the volume of food he would take at one time, there hasn't much additional progress made since we moved in the fall (the move itself played a role in that, I think).  He still only eats stage 2 (no textures allowed).  But lately he's started becoming interested in drinking from a cup (he won't touch it with his hands, though... you have to do it for him).  He opens his mouth for the cup but we still need to teach him how to close his mouth around the cup lip and take in only as much as he can swallow (most of it drools down his chin, but at least he's trying).
• Earlier this year we made the move from Neocate (insanely expensive formula... think 4x Nutramigen) to Boost Kid Essentials.  So at least we can buy it elsewhere when we travel now.  And it tastes good so he'll spend some time attempting to drink a bit from a cup.
• So... feeding time is basically 4 times a day, spending at least 30 minutes trying to convince Micah to take another bite of yogurt/baby food, and hooking him up to his pump for 6 ounces of formula (though we don't try to feed him orally during the 3rd feeding of the day).

Micah sees a private speech/feeding therapist 2x/week (co-treat with an OT one of those days).  They're both great and are working to eliminate this lovely texture aversion that Micah has.  He has actually WILLINGLY put his fingers into paints lately.  This is huge progress for him.  He also has an SLP (speech and language pathologist) who comes to the house 3x/month to work on speech and a bit of feeding.

It's a long road.  And a bumpy one with lots of detours.  And it stinks.  Really stinks.  I have a boy who is almost 2 1/2 and he doesn't really eat anything of significance and doesn't know how to drink.  And won't put anything in his mouth willingly... EXCEPT A CRACKER!  Not that he ate it.  But he didn't hate it.  He tasted it (well, at least the salt).  And he didn't throw it away.  And he didn't want Matthew to take it from him (resulting in a Matthew scream-fest... yes, the child looks innocent enough... but then he opens his mouth...).

We served a meal at the Ronald McDonald House with some friends from MOPS, small church, and Mark's office a couple of weeks ago in honor of Micah's health and in thanks for the many meals we received recently as well as from volunteer groups who provided meals for us during the time we spent at the RMH in Milwaukee during Micah's first year of life.  We were very busy serving so we didn't have much time to interact with the families staying at the House.  But I did meet a dad outside when I arrived.  His daughter was in the NICU and was scheduled to get a g-tube the next morning.  He was nervous about the surgery but anxious to have an opportunity to bring his daughter home.  I mentioned that I understood how hard that decision was because our son has a g-tube too.  And then he asked the question, "How old is he?"  Oh, how I hated answering him.  I told him that there were a lot of other issues that Micah had faced that resulted in the long 2.5 years.  But I know that it hurt the dad to hear of the possibility of a long-term issue.  I know that it hurt because I saw his face and I know it hurt because it hurt ME so much to even tell him.  A little friend of ours here just got her g-tube removed recently.  She's five.  Five.  Long cry from a couple of months.

In closing, I would like to give some advice to those of you who know a parent who has a child with a major oral aversion (or texture aversion, etc... this is not just for kids with Down syndrome).  The next time you hear that parent complain about a pending dentist appointment or haircut, please don't suggest a sucker to pacify the child.  There is no bribing a kid who has an oral aversion.  And that parent would probably let her kid eat candy at every meal if he would just EAT CANDY.  And though it might seem logical to bribe with a sticker instead of a sucker, keep in mind that the oral aversion often comes with a texture aversion, and that sometimes includes sticky things like stickers.  Maybe offer to come along as a distraction... someone to hold the iPhone and run a video while the parent puts said child in a head-lock.

Thanks for reading my vent.  And a huge thanks to all of you who have supported us in this journey.

P.S. To any feeding tube parents out there... Do you have babysitters (other than family members) who know how to feed your kid?

the afghan

After visiting 14 states in the U.S., the T21 Traveling Afghan is on its way to Canada.  We're sad to see it go, but we're really looking forward to following its journey.  It was to have visited another little one here in MN before heading up north, but she was sick in the hospital and we didn't want to bring our germs over there.  We tried to work out getting it to someone else, but I couldn't make the logistics happen.  Sad tale from a former logistics engineer!

Micah didn't get a formal photo shoot like his buddy, Max.  But I took some fun ones in the family room.  I wasn't sure how Micah would do with the afghan.  He's not much of a blanket kid... he has some texture aversions (likely related to his lack of eating as a baby, by the way).  But he really enjoyed playing with the afghan!  And the afghan provided warmth to Micah in the PACU in a propofol-induced sleep following his CT scan.

Antibiotics, anyone?

The verdict is in.  After the CT scan, lots of phone tag, voicemails, and conversations with doctors (both Micah's and my own personal expert, Colleen), the powers that be have decided to treat Micah with a 14-day course of antibiotics (clindamycin, to be exact) to treat for staph.  The CT indicated that he "might" have an infection under/around his tube site.  We took pictures of the redness around the area before beginning the treatment.  Micah's pediatrician will look at it when the antibiotic course is finished.  Micah is scheduled for a follow-up with an immunologist on July 6th.  This was meant to just be an immunology work-up to check for any sort of immunity concerns (he can't be tested prior to then because of the IVIG treatment he received when he was in septic/toxic shock).  But the immunologist (who is an infectious disease doc) will also look at his tube site.  He will also be seen by his GI doc on June 25th and she'll take a good look at it too.

Meanwhile, I received a call from the pulmonologist, Dr. C, who does the sleep studies (he's also the critical care doc who discharged Micah on 5/2).  He was great.  He basically did a phone consult to eliminate the need to see Micah for an evaluation prior to the sleep study.  He also said that he prefers to wait at least 6 weeks after a child comes home from the hospital to make sure they're back in their regular sleep habits.  That would put us to mid-June.  Frankly, I really don't want to add something else to the mix right now, so I'm delaying the sleep study until after the July 6th appointment with Imm.

Micah had an appointment with ophthalmology today.  He sees Dr. B again in September.  This was a check-up with the orthoptist who works with the ophthalmologist.  She noted Micah is crossing his left eye up close and his right eye at distance, which she said was good because he's using both eyes.  She doesn't recommend patching at this point (which is good).  We're still likely dealing with a repair in the fall.

P.S. Micah is eating a little more these days.  And he slept through the night the past 3 nights.  Wahoo!
Pics soon...

Wordless Wednesday

Cutest thing in sneakers

Please pray for James

The reality of what Micah went through in April hits me sometimes like a brick.  Today was one of those days.  A friend on Facebook posted a link to an article about a boy named James in Albany NY who is in the hospital recovering from septic shock.  This little 3yr old boy has had a leg and an arm amputated.  His kidneys still aren't working.  And he has brain damage.  He's been in the hospital for 7 weeks.  He has months of inpatient rehab in front of him when he's stable enough to be discharged from the hospital.

When Micah was at Children's last week for his CT scan, the nurse who pre-op'd him was remarking about how amazing it is that Micah looks so great after going through his Toxic Shock experience last month told me of a boy she knows who lost all four limbs to Toxic Shock.

So who am I to complain about Micah's eating regressing about a year?  Or that we're still dealing with an issue around his g-tube site?  We're blessed to have him HOME and ALIVE.
(On a separate note, I've been wondering if Micah's pesky extra chromosome helped save his life through his Toxic Shock experience.  Kids with Down syndrome have a higher survival rate when facing leukemia.  Any chance it helped him combat a toxic infection?)

Not to say that life has been a cake walk since he came home.  Honestly, I'm tired.  I am in desperate need of a major vent.  But I find it difficult to vent right now because I feel guilty.  There are so many others in more challenging situations than mine.  We're all home... together.  And I'm not sitting here worrying about my husband's safety in Afghanistan or Iraq.  There are many out there who are.  And there are many others who have lost loved ones in the military, both recently and long ago.  So this weekend, in particular, I'd like to just simply say, "Thank you," to those families.
And I ask that you would please pray for the Deere family in Albany NY.

(If you're wondering about Micah's CT scan results... so am I.  There's some sort of thickening on one side, but it doesn't appear to be a major abscess.  Micah's GI doc wants him to see an Infectious Disease doc.  We'd like to avoid needing to move his g-tube site, which would be a surgery and another war wound on his belly.  And given all of the g-tube concerns, I'm postponing the sleep study until July... or August.)

Micah medical update

Ugh.  Yes, there's more to write.  It's exhausting to think about putting it all together in one place, which is why I haven't tried before now.

INFECTION:

Micah was NOT sleeping well the week after he came home.  By Friday 5/7, I couldn't take it anymore and took him to the pediatrician.  We decided the lack of sleep was likely due to a) a urinary tract infection (UTI)  and/or b) withdrawal symptoms from the heavy-duty sedatives he was on while in the hospital for so long.  A CBC (complete blood count) revealed that Micah did, indeed, have an infection brewing again.  After running blood cultures, she gave Micah a shot of rocephin to treat for a UTI.  The next morning his CBC showed a much lower white cell count so the rocephin was doing its job.  He got another shot of rocephin then started 8 days of augmentin (in case you're curious, the blood cultures all came back negative a few days later, so it was not a systemic infection he was fighting)

We also changed his MIC-KEY button (Micah's feeding port), per the recommendation from his pediatrician who felt that should have happened in the hospital due to the fact that staph can reside on plastic.  Whether it was due to the button change or the antibiotics, Micah's tube site looked great for about a week (it doesn't usually look "clear", but it's never looked super bad, i.e. pussy).  His tube site is now red and streaky again (he finished antibiotics on Monday and the tube site started looking questionable on Thursday).

He had another CBC done today and it looked fine.  But with the tube site looking red again, the pediatrician consulted with Micah's GI doc about the possibility of an abscess below the skin.  If there's an infection down under the skin, it wouldn't ooze or be noticable as a valid port of entry for the staph that almost killed him.  But if there's an abscess there, it could be (and likely was) a ticking time bomb.

So... how do we find out if there's something buried there under his skin?  A sedated CT scan is the answer from GI.  The first opening is Tuesday morning, and after the nurse at the pediatrician's office got that all scheduled for us, I realized that this is the morning of Nathan's last day of school and he has a program that morning that I'd rather not miss.  So now we wait until Monday when the scheduling office is open again.  Micah is still a "cardiac kid," so I don't know what all will be involved in sedating him for a CT scan.  Guess I'll find out soon.

EATING:

Micah has not eaten well since he came home.  There was some concern that maybe he had thrush since he had been on almost every antibiotic known to the medical community during the month of April (and again in May with the rocephin and augmentin).  But he has had major difficulties swallowing.  He'll open his mouth for a bite of stage 2 baby food (which is the only food he allows in his mouth, and in very small quantities to start with), but then he'll appear to gag on it and not take any more.  So... I wanted to make sure that he didn't have any damage due to his extended period of intubation (and the fact that the intubation did not go well in the first place and was done emergently).

We visited Micah's ENT on Wednesday to see if there was something going on inside there.  Throat looks fine.  Micah still has enormous tonsils, which are blocking roughly 80% of his airway.  The ENT wants to do a formal sleep study to check for apnea before we address a swallow study to check for issues with eating.  I believe he used the phrase, "You have the luxury of a feeding tube to keep him nourished."  I SWEAR, IF I HEAR THAT PHRASE FROM A DOCTOR EVER AGAIN, I MIGHT HAVE TO DECK THAT DOC!  I'll postpone the feeding rant posting for another day.  But suffice it to say, there is nothing luxurious about having a child with a feeding tube.

I'll keep you posted when the sleep study is scheduled.  Can you imagine Micah having a bunch of electrodes glued to his head and him falling asleep that way?  I've heard that some clinics will allow the child to fall asleep BEFORE attempting to attach the monitoring stuff.  Does anyone out there have sleep study experience?  Please share in comments below.

The other thing that happened at the ENT's office is that the doc had to put Micah under a microscope to remove some wax buildup that was blocking the doc's view of Micah's eardrums.  Good thing he did that.  From Micah's left ear this doc pulled out a large scab.  It was gross!

That was Wednesday.  Micah slept through the night that night.  And he ate an entire 4oz container of stage 2 bananas for dinner on Thursday.  Coincidence?  Unlikely.  I didn't put two and two together.  That was the brilliant mind of Micah's SLP (speech and language pathologist) - who Micah blew off today by taking a nap instead of working with her.  That gave us time to chat about all of Micah's feeding stuff.  She thought maybe Micah was having some irritation in that ear and by having the scab removed, his ear might feel better and that would make swallowing easier.

Unfortunately, consuming said bananas might be why he woke up crying FOUR times last night.  This child is anything but a controlled experiment.

CARDIOLOGY:

Yes, it's been a medical week for us here.  Micah saw his cardiologist yesterday for his 6-month checkup (oh, how I long to hear the, "See you in a year!" comment that most AV Canal repairs get after one year).  But I'm not complaining... this was the best news of our week.  Micah has mild leakage in his mitral valve and his tricuspid valve.  His mitral regurg used to be mild-to-moderate, so this is actually an improvement.  He is on enalapril and that has helped shrink the size of his heart and reduce the leakage.  It appears that he'll be on enalapril for a long time (maybe a lifetime?).  But the cardiologist does not think Micah will need another surgery to repair the valves.  Praise the Lord!

I confess that I was worried about this appointment.  Micah had an echo done in the hospital after he got out of the PICU.  I requested it because I knew he had this upcoming appointment with his cardiologist and given the chance, I'll have the echo done while he is still on mild sedatives in a hospital bed, thank you very much.  Micah wouldn't even let the cardiologist's nurse get his blood pressure on Thursday.  I cannot imagine having to suffer through the torture of an echo on Thursday!  Anyway... I was worried because his heart took a major beating when he was in toxic shock last month.  His blood pressures were dangerously low (almost non-existent for a short period of time when he was being intubated).  And his heart was working hard to get blood to his organs.  It wouldn't have surprised me to hear that his heart had been damaged.  But it wasn't!

Please pray for answers to Micah's eating issues, sleeping issues, and most importantly, that there would be some sort of resolution to his tube site redness (ideally, that it would not involve having to go in and surgically remove an abscess, but we'll take that if it means he'll be more comfortable and we can have peace about no recurrent infections in our little man).

On a separate note, we have the T21 Traveling Afghan.  Pictures to follow!

Self-advocate talk and random photos

(If you subscribed to my blog on Feedburner and receive emails, I'm sorry that they're looking odd lately.  If you click on the blog title in the email, it will link you to the blog and you can read it in the appropriate format.)

Our local Down syndrome parent group had a speaker tonight.  She's 30 years old and has Down syndrome.  She lives independently with a roommate (who also has Down syndrome), she does her own menu planning, cooking and shopping, she balances her own checkbook, she has two jobs, and she speaks very well.  What an awesome encouragement to all of us parents in the day-to-day grind of therapies, IEP's, etc.!  Lori's mom came with her, but mostly just to answer questions we had (and she ran powerpoint for Lori).

It was wonderful to be there with Micah.  Our last gathering was a pizza party and Micah got sick the next day.  This group pulled together and gave generously to us while Micah was sick.  We're so blessed!  This was Micah's highlight of the night:

(Have I mentioned he hasn't been sleeping well?)

Saying "farewell" to our faithful childcare providers!

More photos, just for kicks.

Doesn't everyone sit like this when watching a video?

We had a fun trip to Chuck E. Cheese on Saturday with the H family.  Our boys LOVE these girls!

(I could not figure out how to take this picture without Mark's head looking enormous)

Monday Micah update

Sorry for the lack of creativity.  I will do a Mother's Day post soon... maybe.  I also need to post pictures of our vacation in early April.  Micah got sick 48 hours after we arrived home on Saturday the 10th, spent the whole week sick, then ended up in the ER that Saturday (you know the rest).

Since coming home from the hospital on Sunday May 2nd, Micah has not been sleeping well.  After five days of that, I took him to the pediatrician on Friday.  We both guessed UTI (urinary tract infection) or withdrawal from the methadone he received in the hospital (ironically to reduce withdrawal symptoms from the other meds he was on during the first week).  The only way to accurately diagnose the UTI would be to put in a catheter (which would cause major irritation, which he clearly was already experiencing).

So, she opted to run some blood cultures (results still not back) and check a CBC.  The CBC (complete blood count) indicated a bacterial infection so she gave him a shot of rocephin on Friday and again on Saturday.  He's still not sleeping through the night, but this weekend was better than last week so we hope we're on the right track.

She also pointed out that bacteria can live on plastic so it would be a good idea to replace his MIC-KEY button (his feeding tube).  I had asked about replacing the button when Micah was in the hospital but was told it wasn't important.  Hm.  Anyway, we changed his button on Saturday and the area around his tube site looks better today than it has in months. Hm.

Micah is on an 8-day course of an antibiotic to treat for staph and the UTI, just in case.  I should have stopped his Miralax last Friday after the rocephin shot (you mommies of constipated little ones know EXACTLY what I mean here).

He's still only taking a very abbreviated nap and not sleeping through the night.  Please pray that he gets more comfortable soon.  Please also pray that he would get his strength back.  He used to beat Matthew up the stairs and he still can't climb them all the way.  His countenance is still off a bit too.  And he's had a couple of purple experiences (he's oxygenating fine, so it's more of a temperature regulation problem).  But we're blessed to have him home!

Happy Heart Day, Micah!

I had glorious intentions of sending a fun photo card of Micah to all of his medical friends at CHW who cared for him during his heart surgery and the weeks following.  But the past three weeks have completely obliterated my ability to accomplish that goal.  I might still do it and send them late.

Last year I gave a summary of Micah's heart repair day (May 5, 2008... Micah's 4-month birthday).  I won't re-hash that again this year.  Two weeks ago I thought Micah would still be in the hospital on this anniversary date.  Two and a half weeks ago there was a possibility that Micah wouldn't make it to this anniversary date.

I'm convinced God has HUGE plans for our little warrior.  He's survived so much.  He's strong and courageous.  And sweet as can be.
Happy Heart Day, sweet boy.  I love you!

Pictures from discharge day

It was a beautiful day to go home!

Bye-bye, nurses, docs and RT's.  Thanks for all you've done for me!

Happy to be in the car

About 5 minutes later

Home with Oma

What is this kid doing to me?

(Nathan was very excited to see Micah)