Saturday, December 22, 2012

Family Welcomes Baby Drexler

Baby #3 (Drexler John) was born December 20th.  7 lbs. 12 oz. 19 3/4 in. long.  Mikan and Anica are excited about having a baby in the house.  Mikan is very interested in what the baby knows and is able to do and how much he can teach him.  When he first met Drexler, he asked us if he knew his states.  When we told him that Drexler didn't know any states, Mikan walked up to him and sang the state song in a whisper next to his head.

It is very encouraging to see Mikan so interested in his baby brother.  What may appear like normal curiosity in the video below is actual such tremendous progress for Mikan.  For him to engage with other kids and initiate interactions is a great breakthrough in his socialization skills.  The appearance of Baby Drexler has reminded us of how far Mikan has progressed and made us realize how important his siblings are for his development.





BTW, Mikan nicknamed the baby "Pancakes" before he was born.




 Anica kept saying "I want to hold it!" and reaching her arms out for Baby Drexler.  I have a feeling she will be a good helper at home.




Monday, December 17, 2012

Dear New Baby


Dear new baby, here is what was happening in your dad's life a couple of days before you were born.

Wipe up Mikan's 2 am diarrhea, drop van off for battery repair, get ride to school, help with b-ball shooters, before school meeting about school safety, Read 40 pg. Safety doc before 2nd hour, Teach High Schoolers, Get Ride to auto shop that says "Go to the dealership for this service," Stop by rental to make a quick fix, go home, play with Anica, call dr. about Mikan's diarrhea, call dealership, wipe Mikan's booty after 3 diarrheas, put anica to sleep, drop off van at dealership...


Saturday, December 8, 2012

Pokagon 2012-Life's Irony

We had a great time at Pokagon this year.  Jenna started having contractions, we came home a day early.  Mikan begged for tobaggonning and went down three times.  Two of which he was in the front of the sled.  Mikan and Anica loved swimming with cousins on Friday night, and visits to the nature center.

However, on the ride home, Jenna had two contractions.  I am listening to a country station.  Tim McGraw's "Don't Take the Girl" comes on.  I'm listening, intently.  First verse, second verse, then the third verse doesn't play.  It gets interrupted by a nationally syndicated Saturday night country music show.  The third verse doesn't play. Morning commute rosaries pay off.  Thank God and we'll keep you posted.

Thursday, December 6, 2012

Mikan eBook and Oregon Baby

I published my first ebook on the iTunes store.  The content is largely drawn from my Master's thesis about Mikan, but I added a few essays, photos, and video.  Follow this link to view it in the iTunes store (But I Did Everything Right is the title).  I've been told that it can only be downloaded on iPads right now, but I am trying to figure out how to make it readable on any Apple device.  I'll update soon.

John and I seem to think that Mikan is making progress in his modified AFOs.  He is able to pick his legs up and bend his knees a little more when he is walking, which will hopefully give him good practice with a more natural-looking stride.  His balance is still terrible, and he falls all the time, but he keeps trying and doesn't resort to crawling, so he must be pretty comfortable.

Mikan talks about the new baby a lot now.  I think he understands that it is coming soon.  He keeps asking questions about what the baby will be able to do (go potty on the toilet, sing the state song, talk, know about planets, etc.).  I've been trying to prepare him for the fact that the baby will cry and poop a lot (and it won't be on the toilet) and that he'll have to teach the baby everything that he knows.  He seems excited.  He also tells me daily that he has a state in his belly named Oregon that will come out soon too.


Wednesday, November 28, 2012

Hanging Out in Mom and Dad's Bed/ Physiatry Update



Mikan recently had a physiatry appointment in Indy.  We saw a new doctor since his old one was on sabbatical.  We discovered that the first physiatrist he saw is now seeing patients again at a new hospital that is a little closer to us, so we plan on transferring back to her.  We were very confident with her judgement.  Anyway, this new doctor confirmed all of the past doctors' assessments: ataxic-like movements, suggesting neurological impairment with balance and coordination.  He has good range and not really any concerning levels of spasticity.  This doctor gave us the go-ahead to remove his backstrap from his AFO to give him more ankle range and allow him to develop more of his muscles needed for walking, running, and squatting.  Mikan is excited about ordering new braces with planets and Backyardigans on them. 

Tuesday, November 13, 2012

Alaska Potty Humor

I found this video while looking through some older files.  It is neat to see how far along his speech has come.  This video is about a year old.  






Below is a video of Mikan singing the state song.  I'm sure this isn't the first time I've posted him singing this song, but we have to listen to it all the time here, so I guess I'll just give the rest of the world an updated taste of our lives.








A picture Mikan started drawing of the United States.  
His marker slipped and made a brown mark at the bottom of Alaska (located at the bottom left of the picture), so he said that Alaska was pooping.  He even added some dialogue to the picture and drew a piece of poster board (just to the left of Alaska's head) that Alaska got as a reward.


Mikan wanted to take a picture by Grandma and Grandpa's flowers only if the number four was allowed to be in it too.

Wednesday, November 7, 2012

Christmas List


Mikan's Christmas List

I love this list.  Only four things and nothing too expensive.  This year I'll have to collect all of the freebie calendars I can and give them out to him as small gifts throughout next year.  I was disappointed the election updates were past Mikan's bedtime.  He would have loved seeing all of the maps.  I will have to show him replays on YouTube.  I think his love of drawing is genetic.  A new package of markers and a blank piece of poster board excites me as much as it does him.  The poster board has been a great motivator for potty training though.  He has been regularly peeing and pooping on the toilet and tells us when he has to go.  Just in time for a new one in diapers.  Thank God.  

During our last meeting with Mikan's ABA therapist consultant, she mentioned that Mikan has been progressing so rapidly that he will soon meet all of the verbal goals on their speech development chart (which they refer to as the VB Map).  They will continue to work on social skills that he will need for kindergarten or first grade.  While we won't know for sure, she thinks Mikan may be ready to transition to a regular kindergarten classroom in a year (maybe January of 2014).  During this transition they go with the parents to help observe and select the best classroom for their child and then therapists will actually attend school with the children for a period of up to three months (which is what insurance will pay for) so they can help the child and teacher set up the best possible environment for success.  We have been told that we should prioritize small class size in our decision.  With our backgrounds in education, we understand how important this is for students of all abilities.  Anyway, the screening process will begin soon even though he still has a long way to go.


Thursday, November 1, 2012

Halloween 2012: The Evolution of Mikan's Costume

For the past six months, Mikan has been talking about being a caterpillar for Halloween.  He likes orange, so I made him a costume out of a sweatsuit, orange duct tape, and one of Anica's headbands.  For the subdivision Halloween party he dressed like this:


He didn't really enjoy wearing the antennae that long because they kept sliding in his face.

Then, a few weeks ago, he started talking about dressing like the planet Saturn.  I didn't want to buy or make him a new costume, so I started convincing him that the stripes on his costume were Saturn's rings and the antennae were Saturn's moons.  He actually seemed ok with it.  But I think at school when he told his therapists that he was dressed like Saturn, they felt sorry for him and fixed his costume a little.  When I picked him up from school he looked like this:



 Sophia, Mikan and Anica at Mikan's school before
Trick-or Treating


He had all of Saturn's 62 moons hanging from the ring.  So he loved his new costume and we brought the ring and moons with us trick-or-treating.  Which was fine until he decided it was too cold and he wanted to just ride in the stroller.  Then he had a few M&Ms, which made his face chocolatey (which looked like dirt) and people began guessing that he was an escaped convict.  I can see where they'd get that.




Bottom line: I made an extremely versatile Halloween costume this year with some good ol' duct tape.



And Anica was a pretty cute witch too.


Wednesday, October 24, 2012

Fall Wordless Wednesday







Sunday, October 14, 2012

HABA Conference 2012



This weekend I attended the Hoosier Applied Behavior Analysis Conference in Indy.  I may have been the only parent there.  I'm not entirely sure, but I can say with certainty that there couldn't have been more than a handful of us.  The conference was mainly geared for therapists and BCBAs, but I gained a great perspective about the issues discussed among the people caring for Mikan.

One main theme of the conference was using data to drive treatments for Autism and avoiding the embrace of fad treatments that haven't been scientifically-proven effective.  Many speakers discussed being open to treatments other than ABA so long as there was data to support their effectiveness.  There was a lot of denouncement of some fad treatments that claimed to be scientifically proven, but weren't in actuality (according to the presentations).  Some of these included cranosacral therapy, sensory diets, the gluten-free/casein-free diets, reiki therapy, dolphin therapy, warm-water therapy, etc.  Mikan has been working with a sensory diet for the last two years.  While we've seen improvement, I think it's nearly impossible to isolate all of the different variables that may have been helping him along the way.  We will still continue the sensory regimen since it can't hurt (and he likes it).  

Anyway, I DO feel confident that his ABA therapy is helping him.  We have seen clear gains in short periods of time that are directly linked to his therapists' outlined goals.

Eating continues to remain a tiny bit better than his baseline.  He is regularly eating chicken nuggets and french fries when they are presented.  Not the healthiest, I know, but I am nevertheless ecstatic about it.  And he WANTS to eat them.  He asks for them.  He demands them sometimes.  No urging, bribing, playing, reinforcing is necessary.  I think he actually realized that he likes them.  I think.

Wednesday, October 3, 2012

Food "Frenzy"


This is the darling smile of a boy that has just started to try new foods.  I'm not sure how it happened, but something has clicked inside of Mikan lately, and he has been much more curious about different foods.  At a fish fry last weekend, I set my plate down and began digging in our bag for the foods I had brought for Mikan to eat.  Before I could even set up his plate, he had grabbed a piece of fish from my plate and began taking small bites.  Not only has he never eaten fish, he has never even acted interested in it.  I can't even put into words how monumental this is.  He went on to eat the entire piece of fish and ignored the Pringles and M&Ms on his plate.

Earlier this week he ate grilled chicken nuggets from Chic-fil-A and took a couple bites of garlic toast. He even asked me about what I was eating one evening (pasta with marinara sauce).  Instead of showering him with excessive praise, we are completely ignoring these small breakthroughs in the hopes that he will begin to feel more comfortable eating on his own and not feel like it is a big deal.  The toughest part of it is that we have NO idea why he is doing "well" now, so it is hard to know how to duplicate these situations.  He's had small breakthroughs in the past and then they seem to fall off, and he retreats to his old ways for months at a time.  I feel good about this time though.  It seems different.  He seems more engaged.  We'll see...


Mikan especially likes the parks near our new house.  One has several hopscotch boards with numbers and a large map of the United States.  Obviously, these are favorites for Mikan.  Last time we went he wanted to eat his picnic snack in Alaska.


This sign hangs above each of the toilets in our house.  Mikan's ABA center recommended using a constant visual reminder to reinforce toilet training.  He LOVES drawing on poster board.  But it is expensive, and he goes through it at lightening speed.  If you visit our house and poop in our toilet, don't expect poster board though unless you bring it yourself.  I have to provide enough for Mikan.


Anica's breakfast this morning.  She got it out of the freezer and began eating it herself.  She's had a cough and sore throat, so I allowed it.  I get the Bad Mom of the Day award I guess.

Tuesday, September 25, 2012

Born to be Mikan's Dad?

I know every dad has a moment when they realize one of their biggest (if not largest) roles in life is to provide for their kids.
After having moved, I am coming to realize that my entire life to this point was somewhat intentionally preparing me to take care of my kids, especially Mikan.  I am convinced of this for the following reasons...

1.) I am as frugal as they come, and always have been.  Had it not been for this frugality, there is no way we would be living where we live now without Jenna working outside the home.  Our only reason for moving is because of Mikan's BACA therapy.  So, me deciding to attend college and go to grad school largely based on where I would not take on any debt allows Jenna to better care for Mikan and Anica today.  This goes without mentioning the vehicles we drive.

2.) Spending large amounts of time studying maps in elementary and middle school.  I know where Mikan is talking about and ask him questions about it.  I see many adults who interact with him shy away from geographical conversations as if they are geophobes or something.  Not me.  I nearly went to Western Michigan to get a Master's in Geography.  However, it is probably better that I have the insurance of a teacher to help cover much of Mikan's therapies.

3.) My last 7 years teaching, especially those with autism or CP.  Those students are helping me become a better dad, while my son definitely helps me be a better teacher.  I get to use what I learn about Mikan on them.  I didn't have to go into education, but I did, and this complements my duties to family.

4.) I have a job close enough to BACA to have allowed us to explore it as an option for Mikan.  Often I hear from Jenna that she has no doubt that this is the best place for him to be spending his days.  Imagine if I worked in Ft. Wayne or further from Elkhart.  We might never have entertained the thought of driving him to the north side of Elkhart everyday to even give BACA a try.

5.) I have a math minor.  Mikan loves numbers.

6.) Almost needless to say...Marrying Jenna nearly 7 years ago was pretty damn good for Mikan as well.

There are times when I wish God didn't think of me as being so capable (God only gives us...).
However, it is with this in mind that I can have the confidence to keep on improving, because much improvement is absolutely necessary.

Monday, September 17, 2012

He's Looking at the Camera


Since behavior therapy has been improving Mikan's eye contact, I've also noticed an increase in pictures where he is actually looking at the camera and smiling.  Maybe there will be more of these to come.  What you are looking at in this picture is Mikan's dinner last night: chocolate chips.  There were other things on his plate that he frowned at and said "I don't want this on my plate," and then he moved them off.  Sometimes he gives whatever he doesn't like to Anica, like he's feeding the dog.  Usually when he's done eating she migrates to his end of the table and eats his scraps.

So Mikan has been in another feeding slump.  I've struggled to get anything besides Pringles, chocolate chips, M&Ms, Life, milk and juice in him in about a week.  I'm not sure why he is so picky.  I feel like he rarely keeps interest in a food unless he has daily exposure.  This makes variety difficult.  What I've listed above are the only foods I think he will eat nearly every time they are offered.  Anything else, even similar foods, he has to be in the perfect mood for.

Mikan just got into a new PT program at a local hospital.  We were told he was on a five-month waiting list, but we've actually only been on it for one month.  We had started him at a smaller clinic so there wouldn't be a gap in therapy after the move, but he's only attended sessions there for two weeks.  Apparently the waiting list was for kids that needed after-school times.  We are happy because this hospital is closer to our house and is a much nicer facility.

We are continuing to explore our area a little more.  We've found several nice parks that the kids love.  Anica even calls our backyard a park because it is about twice the size of our old house.  Whenever she hears our back door open, she says "Outside, play, park!"  Mikan thinks her sentences are hysterical since she can't quite pronounce all of her sounds.  It helps give him some ownership of his skills and he's good about trying to teach her what he knows.  Consequently, she has her number recognition down and points different numbers out wherever we are in public, to Mikan's delight.  She also can recognize when she sees a state shape.  She can't identify any states, but when she notices one (either a magnet, puzzle piece, etc.) she will say "State!" and then run it over to Mikan because she knows he will demand to have it.


Wednesday, September 5, 2012

Change

We've been a little absent in the blogosphere lately, busy with our move.  Although we are still living out of bags and boxes, we are officially living at our new residence.  This house is 12 minutes from Mikan's ABA therapy school, which was the primary motive for the move.  Next week he will be starting his ABA 3 full days and 2 half days.  We are planning on scheduling him for PT during the mornings of the 2 half days.  We've decided to drop the OT and ST since he is receiving those services regularly through his ABA program.  We have been very impressed with the quality of treatment he has been receiving.

Mikan likes the new house and doesn't appear to have any problems with the transition (except that he likes it so much that he wants to stay here instead of go to school in the mornings).  The day is long for him (8 hours), but he does well, and we continue to see progress.

Potty training is going well.  He still doesn't tell us when he has to poop, but if we are paying attention, we can read his body signals and take him to the toilet.  However, he still needs motivation to go.  Tonight after I took Mikan to the toilet to poop and he refused, John went in with him.  John told him that if he pooped on the toilet, he could write a number 4 on his chest.  Mikan's eyes lit up and he pooped within 2 seconds.  Mikan requested a purple marker and drew a 44 on John's chest.  Whatever works, I suppose.

Saturday, August 18, 2012

A Little Offbeat


This was a picture taken from a beach trip last weekend.  Yes, it was the best picture I had of Mikan.  He was really excited about wearing his new life jacket, but unfortunately he only wore it on land and refused to wear it in the water.  As you can tell from the picture, it was a little choppy on Lake Michigan, so the kids had a good time bobbing up and down with the waves in their raft.

We tried to go to the beach again this morning, but our car refused to start after we stopped at a vegetable stand along the way.  We were able to jump it and drive to a shop a few blocks away from our house though.  We couldn't get it started again after we turned it off.

I am in week 21 of this latest pregnancy and things appear to be progressing normally.  I already had a cerclage and am receiving weekly progesterone shots to prevent premature labor.  I have limitations on activity (no jumping, jogging, exercise of any kind except walking, lifting over 20 lbs, etc.), but I haven't needed to be on bed rest, which is a blessing.

Mikan's ABA therapy seems to be going well.  We are beginning to notice improvements in eye contact, self-correcting his mixed up pronouns and quicker response times when he is asked to complete a task.  He still claims that he "doesn't like his friends" at school, which is something he has always complained about ever since he started at his regular preschool.  He says he likes his teachers though.

So he may not be a social butterfly.  We've pretty much seen that one coming for awhile.  There can't be too many truly great people who were described as social butterflies though.  He thinks on a different level than most of his peers (and adult caregivers).  Example: One morning this week he drew some sort of blob with a smiley face inside of it on a piece of paper.  He asked me if I knew what it was.  After studying it, I said, "A cloud?"

Mikan responded, "No! Papua New Guinea!"

Of course, Papua New Guinea.  And it sure did look like Papua New Guinea.

Monday, August 6, 2012

Inside the Journal of a 4-year-old

We were somewhat reassured by Mikan's most recent nutrition visit.  Although he hadn't gained any weight, he maintained his previous weight for the past two months.  We know we have a long way to go before Mikan is in a healthy eating pattern, but at least he is sustaining himself.

He is also making tremendous progress with potty training (thanks to his ABA therapy).  We adopted their potty training program at home, and now he pretty much stays dry all day.  He still doesn't tell us when he has to have a bowel movement, but all of the pee is making it where it needs to go.  Thank God.  Maybe we won't have three kids in diapers in December...

One of Mikan's favorite hobbies is writing.  He will write and rewrite his ABCs and numbers 1-100, then he will write them in block format and add smiley faces and hands and legs to each letter and number.  After he is bored with that, he will begin to draw pictures or write sentences, usually about his day.  I found this one on the back of one of his notebooks this morning.  I'm pretty sure it refers to the fit he threw last night with John over not wanting to get out of the bathtub.  I rewrote the words below if it is too difficult to read.




"Today Dad and Mikan told that Mikan needs to get out of the tub but no."




For anyone wanting to take a trip down memory lane...One of my essays about Mikan from our time in the NICU was recently published in a new IU literary journal (The same essay I read on our local NPR station a few years back).  Here is the link if anyone is interested: https://www.iusb.edu/currents/that-other-family/

Sunday, July 29, 2012

Town Fair Therapy

Mikan shocked us this weekend when he tried a few new foods.  We took him to our town's annual "Hometown Days" festival for dinner one evening.  After we sat down at a picnic table and Mikan finished his regular meal of Pringles and cereal, he said "You want some fries."  Because he still gets his pronouns confused, he was actually telling us that he wanted some fries.  John and I looked at each other and then I promptly found a vendor selling some fries while John went to purchase an elephant ear.  After Mikan ate several fries without gagging, he said "You want an elephant ear."

What?!  I thought.  An elephant ear?  This kid hasn't eaten anything non-crunchy in almost 2 years.  And before that the times were few and far-between.  So we broke off pieces of the elephant ear.  And he ate them.  And he asked for more.  And he ate those.  And then he asked for more.

Needless to say, for the rest of the weekend we kept asking him if he wanted to go back to the festival to eat.  Since I couldn't be certain about the availability of elephant ears anytime in the next year, we took him to dinner again the next evening at the festival.  There probably aren't too many parents who are ecstatic about their kids eating a weekend of carnival food.  Baby steps.

Sunday, July 22, 2012

G-tube Update

Last week Mikan saw the surgeon who checked his g-tube scar.  He said that it didn't look like any stomach contents were leaking, but the redness and drainage may be due to his skin rubbing together since his skin kind of collapsed in on itself as it tried to heal.  He wants to let us watch him for another 7-8 months before we decide on a revision.  However, if the site begins to bother him, he will fix it up right away.  I don't think it has bothered him too much yet, so we plan on giving it some time.  Avoiding/delaying another surgery was good news to me, and, since I celebrated my 29th birthday on the same day as his doctor visit, I considered this part of my present.

Mikan will have a weight check soon, his first since ditching the g-tube.  I am fairly certain he has lost weight, but I don't think he is wasting away.  Hopefully time will help with this as well.

Right now we are going through the process of finding a new house in a location that will centralize all of Mikan's therapies (PT, OT, ST, and ABA).  Right now his therapies are separated by about a 70 minute drive.  Moving seems a little overwhelming, but cutting down on the driving that I will have to do with all the kids in the car will definitely be worth it.




Mikan proud of his upside-down dressing.  Boxer shorts on the head and tank top on the bottom.




Wednesday, July 11, 2012

Wordless Wednesday








Wednesday, July 4, 2012

Happy July 4th 2012

Mikan was pleased to hear that today was the 4th, since 4 is his favorite number.  He's been talking about it throughout the day.  With the dry weather this year, fireworks are scarce in this area, so we won't be staying up for any shows.  We spent the morning at Lake Michigan with some of Mikan's cousins.

Mikan's g-tube still hasn't closed.  The drainage is very minimal, but I will have to schedule a GI follow-up to determine whether surgery is necessary.  

Mikan has now completed his first month of ABA (Applied Behavior Analysis) therapy.  The first month was mostly made up of assessments, and we recently met with the therapy consultant to discuss his results.  Mikan entered the program with many skills to build on.  Right now he is attending therapy 3 days a week for 8 hours.  However, we were a little surprised to hear a recommendation for a more intensive program.  The consultant basically said that many autistic children who attend therapy school part-time and a general education preschool part-time tend to take longer to make progress since negative behaviors are unintentionally reinforced (She said this was true regardless of a child's severity.).  So her recommendation was an aggressive program five days a week to build a quicker and more solid foundation before we transitioned him back to a regular classroom.  She also explained that Mikan would not be missing out on too many academic skills at his age and that they could work with him to continue developing academically.  He also already has many of the academic skills necessary for first grade, but he lags terribly in socialization.  

Anyway, this gives us a lot more to think about since we do not live close to his therapy school, and we were hoping for a short bout of ABA.  It sounds like he may need ABA for another 2-3 years (either full-time or part-time).  Of course it is impossible to predict anything now, but we are beginning to recognize how his delays are impacting him.  

So we are still deciding on a permanent schedule for him, trying to sort out what his "best interests" are, if that ever could really be determined for sure.  On a positive note, he really enjoys his ABA school and they treat him very well, with activity-based learning so he isn't aware that he is working.  I think I originally had a more traditional perception of ABA and was worried that he would participate in "drill and kill" tactics.  This doesn't appear to be the new approach.  






Mikan checking out the numbers and letters outside of the mailbox.





Mikan was sitting happily with his sister and cousins, playing in the waves two seconds before this picture was taken.  Then he returned to drawing states in the sand (which drew a small crowd of impressed strangers).

Monday, June 25, 2012

Snapshots of Last Week


Mikan and Anica "sharing" the iPad as they watch Super Why.






When Mikan heard it was the first day of summer, he decided he needed to wear a baseball hat and sunglasses outside.  



 

Anica decided she needed a hat too.





An example of what Mikan does in his spare time...






My favorite photo from Uncle Jar's visit.  Mikan made this face after we told him to smile.  

Monday, June 18, 2012

G-tubeless Update and Big News

2 weeks post g-tube removal Mikan is doing well.  The site looks clean.  It looks like he has another belly button.  It is still draining slightly (only visible in small amounts on a gauze pad).  This bothers me a little since his doctor said it should seal up within 24-48 hours.  If it refuses to seal, he will have to have surgery to stitch it up.  I was hoping Mikan might dodge this procedure, but it's not looking good.

Mikan is very protective of his stomach.  He regularly asks where his g-tube is and always wants the site covered with a protective pad (even though it has healed enough that it doesn't need to be).  He talks about how Mom and Dad got their g-tubes out and how he is just like us.

I am curious about Mikan's weight.  Ever since he began drinking juice his Pediasure intake has reduced.  I'm not sure his eating has improved enough to compensate.  Time will tell.  He isn't scheduled for a weight check for a while.

Mikan is doing well in his ABA therapy school.  He attends his school 3 days a week for 7 hours a day.  Right now he is still in the middle of assessment and testing, so they haven't cemented any goals or a progress plan for him.  We expect this meeting in a week or so.  He enjoys going to the school and the staff seems very knowledgeable and helpful.  We are excited at the small amount of progress we have seen already in the few weeks he has spent there.

We spent our Father's Day weekend at home.  John has been traveling for work-related functions all month so the kids were excited to spend some time with Dad.

Gensic Family News: Baby Gensic #3 is expected just before Christmas.  Mikan acts pleased to be a big brother to another one.  He always says he wants it to be a girl, and he wants to name her Anica.  When I tell him I think his sister would be confused, he just laughs at me.

Wednesday, June 6, 2012

Totally Tubeless! (WARNING: This post contains yucky images)

The past week has been a bit of a whirlwind, but it's finally starting to calm down.  Last Thursday Mikan saw his new physiatrist in Indy who confirmed that Mikan did not need botox and that he actually had great ankle range.  She even said that the night bracing regimens he went through over the past year were a treatment specific to our region and that it wasn't a widely-recognized practice.  She agreed that Mikan needed additional therapy and time, but she thought he would continue to progress.  

The following morning we traveled to Chicago to see a GI doctor and food-chaining specialist who we hoped would removed Mikan's g-tube.  He agreed Mikan needed the tube out, but, unfortunately the office we were seen in didn't have the correct tool to remove it.  The tube Mikan had for the last two years is a Mini-One non-balloon.  It requires a special tool to remove that must be inserted inside the tube to stretch out the disc that holds it secure against the inside lining of the stomach.  The tool stretches the disc thin enough to slide back out through the stomach opening.  This sort of g-tube (although it has worked wonders for Mikan) is not used in the Chicago area that often.   

Yes, I called ahead to let the office know about Mikan's specific g-tube and asked if we needed to prepare anything before we came.  No one returned my call.  I was trying to prevent a situation like this.  So we wasted our Friday in Chicago.  They were apologetic and told us to go to the GI doctor who inserted the tube (in Ft. Wayne), and they sent Mikan home with a Candy Lane game.  On the way out John muttered something about getting a complimentary gas card instead.

Mikan's tube was a mess by the way.  It was two years and five months old.  These tubes are supposed to last 6-12 months.  But, if they aren't causing any problems, doctors tend to leave them in, since removal is not easy.  But Mikan's tube had been falling apart and wouldn't even close anymore.  He was beginning to develop skin irritation from the gastric juices that leaked.  I hurriedly called the Ft. Wayne office to set up an appointment ASAP on Monday.


Fast forward to Monday: Apparently patients are supposed to not eat or drink anything before g-tube removal (No one mentioned this to me.).  As the doctor is trying to take the g-tube out, gastric juices keep squirting out of the tube, causing his tool to slip.  He can't lock his tool securely since the outside of the tube is torn.  Mikan is screaming of course and begging for the doctor to let him take the g-tube out all by himself.  But yes, the tube did come out.  Afterwards Mikan proudly announced that his g-tube was gone and now he had a "regular tummy."


A "before" picture.  Mikan's g-tube no longer stayed closed, so we had to tape it shut daily.





Yuck!  The disc at the bottom of the tube is supposed to be round.  Much of it has deteriorated.  2 years and 5 months is a good run though.  Thank you Mini-One non-balloon.




Look everybody!  No more tubes!






Mikan's eating is still horrible by most people's standards; however, his regular Pediasure intake is consistent, which is why his doctors don't think the tube is necessary.

Goodbye t-tube.  We appreciate all you've done for us.  But this year Mikan will finally be able to wear a life jacket since you won't be in the way.  He won't have anymore stomach infections.  I won't carry around syringes and extension tubing or a back-up balloon tube.  On the other hand, I won't be able to slip Mikan's antibiotics through you anymore, but I'll figure a way to manage in your absence.

Friday, May 25, 2012

The Sickness Continues


We don't have a lot of news to report.  Mikan is sick again with a new respiratory something or other; this time it has affected his eating, but I think the worst of it may be over.  

Next week Mikan will see a few specialists so we may have some news on the medical front.  

This week we visited a new neurologist who was pretty quick to recommend Botox injections for Mikan's tight gastroc muscle.  When I told her that he regularly sees a physiatrist who said Mikan was not spastic enough to justify Botox injections, she said she was fine with waiting four months to see his how he progresses.  I can see regular improvements in his walking, so I really don't think this will be necessary.

Below are a few pictures from the past week.




Mikan catching a ride in Sophia's new car.





Poppi teaching Mikan how to drive.




Mikan drawing numbers on our deck with a fly swatter stuck down the back of his pants.  Why?  Who knows.