Wednesday, December 28, 2011

Tuesday, December 20, 2011

He Plays



Mikan trying to help Anica blow out her candle. John is trying to coach him. Mikan still doesn't know how to blow or spit.

Mikan is recovering from another illness that completely haulted his solid food intake. Eating therapy is such a stressful, tiresome, and nearly thankless task. We are thankful for his regular appetite for Pediasure, but I just don't see any real progress on the horizon.

Mikan loves the Little People zoo set Anica got from Nina and Poppi for her birthday. The night she got it, Mikan stayed up playing with all of the animals. He actually played with them appropriately and didn't point out to us how the lion actually looked like the number eight, the tree like Idaho, or the tree swing the letter 'u'. John and I just watched him playing, foregoing his bedtime in favor of appreciating this milestone his therapists have been encouraging for two years.


Any guesses what Mikan's drawing might be?





In his words, "Mikan with snot coming out of his nose."



Mikan cuddling with Sophia and watching Dora.



We wish everyone a Merry Christmas and a Happy New Year. May you have a blessed holiday season. Thanks to all who have been praying for us this year.

Sunday, December 11, 2011

First-Ever Toboggan Run

I saw Mikan drawing on his own, and when I noticed what he wrote, I was so proud that I had to take a picture. I was impressed, but maybe it was just a mom thing. Are three-year-olds supposed to be spelling this kind of stuff?




We spent the weekend at Pokagon State Park. Mikan LOVED tobogganing. John had to stop taking him down because he was tired of carrying Mikan back up the toboggan run. Below is a video of one of their runs. You can't really see their faces, but it gives you an idea of how fast they were going.



Mikan painting a Christmas tree in Pokagon's craft room.



Mikan' playing in our first real snow earlier this weekend.



Thankfully one of Mikan's nurses was able to shove back in the piece of Mikan's g-tube that had gotten dislodged earlier last week. It isn't entirely secure, but it is functinal. Because he is close to having it removed, the GI nurse said that as long as the piece stays in and the site looks good, we don't have to have the tube changed. We are pleased with this and are praying that it will last until spring.

Saturday, December 3, 2011

G-Tube Trouble

Mikan jamming to his state song.



This week the inevitable happened...Mikan's g-tube broke. After nearly two years of no problems, a part near the area where we insert the extension tubing broke off. We aren't using the g-tube right now, and we were hoping to get rid of it entirely in the spring, but this breakage prevents it from staying closed and leaves more area open for debris to enter the stomach. So, we are going to have to change it. Our options are to switch back to a Mic-key tube which, while easier to insert, caused him tremendous difficulty in the past, or replace it with the kind of tube he has in (a Mini-One non-balloon), which needs to be inserted by a doctor and is a pretty painful procedure. We had so much trouble with the Mic-key (infections, granulation tissue, the balloon breaking when we weren't aware of it) that I can't imagine switching back to it, even for only six-seven months. I feel terrible that Mikan has to go through the switch though when we were relatively close to getting it removed. He's pretty tough though.

Saturday, November 26, 2011

Happy Thanksgiving 2011



This year we have plenty to be thankful for. To name just a few:

-Mikan's gross motor progress (including learning to walk on his own, and squatting to pick something up off the ground)
-Mikan's speech and developmental improvements (including beginning to use sentences, improved eye contact, and a sporadic interest in using the potty)
-Not needing to worry about Anica meeting any developmental milestones
-A warm house for the winter
-Not being the responsible party for cooking the turkey
-Loving, supportive families
-No unscheduled hospital stays
-The daily indescribable joy of two giggling kids

Sunday, November 20, 2011

Church





If you were to attend church with our family, it would look something like this: One of us is occupied with Anica in our lap. We will continue to offer her Cheerios to keep her happy and prevent her from wanting to crawl all over Mikan. The other is dedicated to keeping Mikan in the pew and not tantruming. What does this look like? Usually we offer him letters and numbers to spell with, or state puzzle pieces to put together; however, although occupied, we still haven't been successful in teaching him how to whisper. Our church parishoners get a review of all the states and capitals and their nicknames when we are there. During the opening song this week, Mikan chose to sing all the states in alphabetical order rather than "Jesus Christ Our Sovereign King."

When I told Mikan he needed to stay in the pew today, he started giggling. I don't think he had ever heard the word "pew" before. He proceeded to yell "Pew! Pew! Pew! That's silly!" throughout the remaineder of the service. We'll call it the bench or the aisle from now on.

Mikan's illness has subsided, and his sister avoided it, so we are pleased. Mikan is showing a growing interest in Christmas, something he hasn't in the past. If you ask him what he wants for Christmas, he says "numbers." He would be happy with a number written on a piece of paper.

Saturday, November 12, 2011

Sick Again

John and Mikan at a creek running through Warren Dunes State Park.



Mikan has had a fever for the past three days. He also has a little redness around his g-tube. His doctor thinks it is viral, but we are supposed to watch him carefully for another few days to make sure. None of us have been sleeping well. Mikan also hasn't eaten any solid food in several days- unless you count one piece of Life cereal. His fluid intake has been steady though. He is supposed to have a weight check tomorrow (assuming he is feeling well enough). Mikan has taken to watching Dora the Explorer when he is sick. It is kind of a tradition now.

Anica took her first steps last week. It is crazy to watch how quickly her gross motor skills are developing. We have a new appreciation for each little benchmark. Every time she corrects her balance, I am pleased with her progress, yet remain sympathetic for how difficult these small tasks are for Mikan still.

Sunday, November 6, 2011

Mikan's Free Time

This is what Mikan does during his play time. See the picture below. I'm not sure where April was hiding.




Below is a picture of Mikan with his "class pet" that he took home for the weekend. Charlie got plenty of love and some alphabet lessons from YouTube.





Mikan has also taken to browsing YouTube for French videos. He is practicing the alphabet and his numbers. John and I joked about getting him a Rosetta Stone program for Christmas (either Japanese, French, or Spanish). We are a little worried that we wouldn't be able to understand anything he said though.


Although Mikan has been doing well drinking his Pediasure, he hasn't been interested in eating much over the last several days. I hope this isn't a sign of another dry spell to come, especially since we have been ordered to avoid using the g-tube.

This past week John and I attended the March of Dimes Signature Auction. We enjoyed the kid-free evening. A lot of money was raised for a lot of babies!




This weekend we spent some time hiking at the beach. We had it all to ourselves.


Monday, October 31, 2011

Happy Halloween 2011




Happy Halloween!

This year Mikan was interested in the novelty of walking up to random houses we'd never visited before. He still didn't care much for the candy, but he he enjoyed reading the packages. When we walked close to the library, he was done trick-or-treating and just wanted to go play at the library. So that's what we did.

Mikan visited a GI specialist in Chicago last week (coauthor of Food Chaining that I've recently read). He also met with a new dietician, speech therapist, and occupational therapist. The newest reccommendations were to stop all fluids through the g-tube. Because Mikan had been having difficulty taking enough fluid in, we had been g-tubing about 15 ounces of water per day. We are switching back to regular 1.0 Pediasure and stopping all water. Mikan will have to do it all on his own. The doc said that Mikan has a history of drinking Pediasure well, so we need to push him more to be thirsty. Mikan doesn't drink anything except Pediasure excluding a few token sips of something here and there, so we are hoping that his Pediasure intake will increase with the water elimination. The dietician also said that it is common that once a g-tube is removed, it will take a child up to a year to find his/her normal growth curve. Mikan may lose weight and gain and lose again for up to a year before his growth is steady. Because we feed him what we assume he needs, we never really know for sure what his growing threshhold is. The doc also wants us to keep food chaining and set up opportunities for Mikan to be interested in food and/or eating. He wants Mikan to be intrinsically motivated to eat. He told us to not even ask him to eat anything or urge him to do something he doesn't want to with food before he gets to eat something he wants. No external rewards. I think we've been doing a pretty good job of this so far, but it is helpful to be reminded.

He said that he didn't want to reccommend removing the tube during the winter, but Mikan has a good chance of getting it out next spring/summer. When I pictured Mikan getting his tube removed, I imagined him eating a lot more than dry crunchy foods and milk, but I've come to understand that this is a long process. And my understanding of "long process" has shifted as well.

Mikan's gross motor has been steadily improving though. This weekend we saw him for the first time stand up on his own from the middle of the room without using any furniture! He wants to walk everywhere and rarely crawls unless he doesn't have his AFOs and shoes on. He still has a classic ataxic gait, usually with his feet wide apart and his hands up high to help balance. I think people who don't see him walk a lot would feel like they needed to follow him around with pillows, but we are used to him falling. He's tough.

Wednesday, October 26, 2011

OOOOOO Come On, Come On, Come On

Mikan and Anica often get a little too close for Mikan's comfort. When this happens, Mikan often urgently says, "OOOOOOO Come on, come on, come on, come on"
He assumes Anica knows what she ought to be doing.

We are wondering where he learned this expression from. I'm sure I've said it before, but we're not exactly sure where it is coming from. However, I like to see more and more of Mikan's personality coming through.

Tuesday, October 18, 2011

Therapeutic Listening


Mikan is trying therapeutic listening in the home. We rented special therapeutic headphones from his OT. Twice a day for thirty minutes, Mikan listens to modified songs that are aimed at regulating his sensory system. The brochure we were given states that "By providing precise input simultaneously to both ends of the vestibular-cochlear continuum, Therapeutic Listening can have a positive impact on sensory function and on the nervous system as a whole." "[those who use this technique are] better able to orient and attend to salient sensory information and regulate physiological states. Having a solid foundation in these important skills then frees up valuable cortical resources for connection, engagement, communication, new learning, and other higher level skills."

The CD sounds pretty normal except for a few scratching/skipping sounds periodically. Mikan loves listening to it. It relaxes him and helps him focus. We are supposed to trial this technique for three months, possibly longer.

On the nutrition front, Mikan lost a pound over the last two months, so his developmental pediatrician wants us to push for more ounces of Pediasure. It is very difficult to both allow him to get hungry and manage his own appetite by avoiding the g-tube, and then making sure he is getting enough to gain weight. I am hoping this is a result of his recent sicknesses and only a temporary setback. His oral intake is still limited, but at least he is eating regularly.

Over the weekend Mikan enjoyed a cider pressing party at Grandma and Grandpa's and a baptism for his "aunt" Sophia. Mikan did great in church. He was reciting a few states and capitals for any parishoners who needed a review, but we didn't have any major meltdowns.

On a different note, John has just developed a Biology study app called Bio on the Go that is now available in the app store. He has been working very hard on this for the past year. Click on the sidebar button to check it out.

Saturday, October 8, 2011

Autumn 2011


We ordered this Ikea swing for Mikan's sensory therapy. He participates in several 20-30 minute circuits each day to help organize his sensory system. Swinging is one of the steps in his circuit. Now that the weather is turning colder, taking him to the park isn't as convenient. We chose this swing since it was reccommended by his therapist. It cost less than $50 on Amazon. Compare that to the $400 price tag on most therapy swings. We bought hardware that allows the swing to spin as well. Mikan loves it. I think it will get plenty of use this winter.



Mikan completely enthralled with Handy Manny. I think he's learning how to fix a blackout right now.



Anica enjoying fall.

Mikan's "ouchies" seem to be on the mend. I think we are just beginning a long list of school/winter illnesses though. We're lucky Mikan is so tough.

Pumpkin patch trip



Tuesday, October 4, 2011

Sicknesses



Mikan has had a barrage of minor illnesses ever since school has started. Runny noses. Diarrhea. Fever and vomiting. Fungal rash around the g-tube. Athlete's foot?

Mikan's toes have blisters all over them. They are very painful. We have been trying to keep his braces and shoes off as often as possible and use a prescription antifungal cream. Of course this means he can't walk, which is frustrating for him. His PT said this is common for kids who wear AFOs because they sweat so much.

Despite all of his "ouchies" as he calls them, he is still good-tempered. He even asks that I sing a song about his "ouchies" before he goes to bed at night. I'm not really sure what he expects me to sing about, perhaps he just wants to remind me that he has them. He also adds to his nighttime prayers now "no more ouchies."

Tuesday, September 27, 2011

Juu Cookie

Mikan visited his eye doctor today. His prescription has gotten slightly stronger. The doctor says this is typical and it may even be that because Mikan is older and tolerates the exam better, the doctor can accurately assess Mikan's visual needs rather than evidence of a worsening condition. He said Mikan's near vision is being corrected well, so this will hopefully translate into an ability to drive later on (You need to be at least 20/50 to drive); however, he was cautious to predict anything for certain.

Mikan's obsession with finding letters and numbers in anything seems to be a little worse lately. I'm not sure what is triggering it, but we are trying to redirect his attention. I thought his perseverations were lessening, but this past week has given me my doubts.

On the bright side, Mikan's walking is continuing to improve. He still falls a lot and needs to have his hands high in the air to balance, but he tries hard and prefers to walk now instead of crawl. He's getting there!

Below is a picture of the cookie Mikan wanted to make last week. He wanted the number ten. Or, as he requested in Japanese "juu!"



Also, congratulations go to John for being named a Jacobs Educator for the Indiana University School of Education. He recently won this award for innovative and engaging use of technology in the classroom. Here is the link to the article from our local paper.

Thursday, September 15, 2011

Allergies, Pee, Poop, Rain, and Japanese

Last week Mikan was tested for several different seasonal and environmental allergies. Everything came back negative. I was trying to get a picture of his back where all of the poking was done since I thought he would be interested that there was an 'A,' 'B,' and 'C' written there, but he wouldn't stay still, so I took a video. I think he's officially turned into a boy with his obsession with the words "pee" and "poop." See the video below.

Immediately after this, I took him into the bathroom for his bath. I took his diaper off and turned to fill the tub. Then I heard him say, "Uh oh. Mikan peed on the rug." I turned around to see him pointing at a fresh wet spot on the bath mat. He ignored my scolding,pointed to it, and said "Alaska!" It was kind of shaped like Alaska.





Good news updates:

1. Mikan's eating has really turned a corner (for now at least). He ate a piece of chocolate and an apple pie stick from Springhope Farm this week.

2. Even though he has decided to ditch a nap at home, he is also slowing ditching his grouchiness in the evenings.

3. Notre Dame beat Michigan State.

4. Mikan is learning to count to twenty in Japanese. Thank you YouTube.

Monday, September 12, 2011

Hungry Boy

Well the stars have aligned. God has answered some prayers. Or maybe Mikan just hates the soy milk we've been offering lately. But something has kick-started Mikan's appetite for solids. He's been shoveling in cereals, goldfish, Chex-Mix, pretzels, and popcorn like he's been doing it his whole life. Consequently, he has refused his milk, and we've had to use his g-tube pretty regularly. However, we don't mind since this interest in food is something we've been working on all year.

We've started a "Yummy Yucky" chart at home. Mikan tastes a food and then labels it as "yummy" or "yucky." Then we put a picture of the food on a chart under the appropriate label. He's been so interested in the chart that he has even tried some foods just to label them as "yucky." The goal is that, with repeated exposure, he will eventually give yucky foods a better rating. It is a strategy from a book called Food Chaining that I recently read.

There are so many variables that affect Mikan's behavior every day that it exhausts me to even speculate sometimes. I don't know why he started eating. There are many possible reasons. All I know is that I will continue to thank God every day for Mikan's progress and pray for the wisdom to help him in the areas in which he struggles.

After a follow-up visit with the GI doc, we learned that Mikan has no lactose allergies or signs of reflux.

This past weekend Mikan attended his first wedding and reception (My godfather's daughter). He loved swimming at Nina and Poppi's hotel between the wedding and reception and dancing with the Irish band later that night.

Mikan enjoying some zoo time before his GI appointment.

Sunday, September 4, 2011

Developmental Pediatrician and Psychologist Update

Last week Mikan had an informal evaluation with a pediatric psychologist. She told us that Mikan has some behaviors that are "concerning." However, because of his age, the multiple possible variables contributing to his delays, and the great network of therapies he already has in place, she said it didn't make since to diagnose him with anything just yet. A diagnosis wouldn't provide any new therapies for him at his age, and perhaps a little more time would help eliminate some variables. The behaviors she was concerned with were:

1) His limited eye contact
2) His preoccupation with letters and numbers in a toy she gave him and his inability to reciprocate a conversation for more than a few exchanges without reverting back to talking about a letter or number.
3) The fact that he doesn't try to get our attention to show us things that often. He talks to himself more instead.

These are all behaviors we are already aware of; however, we can't help but recognize how much more severe each of these behaviors was 8-10 months ago. He has come a long way, and we are cetain he will continue to make progress.

In the interview, John asked the psychologist, "Couldn't his interest in letters be evidence he might become the greatest writer ever?" She humored him and admitted it was possible.

So the psychologist wants to wait until he finishes the school year, and then she will complete a formal comprehensive evaluation to see whether or not he falls somewhere on the spectrum. We are convinced that if he does fall on the spectrum, his placement will be mild.

Next week we get the results from his esophagus biopsies. We are also visiting an allergist.

Mikan's teacher said she would like to move him up into the inclusion classroom, the "highest" level for his age group. One of his therapists joked that a kindergarten classroom would really be more appropriate for him if it weren't for his delayed social skills.

Finally, his developmental pediatrician did not agree that Mikan should go without the g-tube. She doesn't mind if he is on a mostly liquid diet; however, she did say it isn't wise to remove it at a point when he appears to be in the middle of a major regression. She wants to see evidence of lasting oral feeding skills before she is comfortable removing it. This makes sense to us too.

His overall fluid intake lately has been down too, so we've needed to use the tube for water. I hope he's not planning a hunger strike until Notre Dame wins their first game.




Sunday, August 28, 2011

Endoscopy



Mikan's upper endoscopy went as well as it could have. If I counted correctly, I think this is Mikan's 10th surgery/procedure with anaesthesia.

Before they wheeled Mikan back, a nurse explained that one of the anaesthetic drugs they may use on Mikan they refer to as "the Michael Jackson drug" because it was the drug that killed him. Needless to say, this didn't settle us down. Too much information. Nurses, keep this to yourselves.

Everything appeared normal. His nissen is still intact, and he didn't have any narrowing in his esophagus. The doctor ordered some biopsies to test for food allergies and reflux. We will see the results in a week or two. So...we still don't know the root of Mikan's eating plateau. His GI doctor thinks it is most likely a hypersensitive pharynx and that he will grow out of it. I don't know what to think anymore. He exhibits symptoms of many problems and then none of them at the same time.

His GI doctor also told us that if Mikan's g-tube fell out, he didn't think we needed to replace it. We were pretty shocked by this since Mikan isn't eating ANY food, but since he is able to drink all of his calories, the doctor said the tube isn't serving the need it once was. We plan on discussing this with his developmental pediatrician and possibly another GI before we follow this plan.

This week we head down to Indy again for a developmental pediatrican appointment and a psychological evaluation. We are trying to sort out whether Mikan's delays are related to his a)cerebral palsy, b)his Retinopathy of Prematurity, c)his sensory processing disorder, d)a possible placement on the autism spectrum, or e)another condition we haven't heard of that someone will try to label him with. This evaluation will help us determine whether or not we have the proper treatment plan in place for him.

On a positive note, Mikan's vocabulary continues to improve. He is fascinated with the planets right now. He has labeled each room in our house as one of the planets. He sleeps on Mars, eats on Venus (drinks milk), plays on Saturn, and goes potty on Mercury.

Wednesday, August 24, 2011

Wordless Wednesday






Friday, August 19, 2011

Little Surfer Update



Mikan catching a sand wave



Diluting Mikan's high-calorie Pediasure seems to have helped curb his gagging. He still coughs on secretions and doesn't eat much of anything, but at least he has stopped the wretching. I took him to see a pediatric GI doc this week who said that the difficulty eating is probably one of three things:

1) a stricture (narrowing of the esophagus) that leads to discomfort swallowing
2) continual reflux because his nissen wrap has come loose
3) a hypersensitive pharynx which is common with children who have neurolgical impairments like cerebral palsy.

He thinks the most likely cause is the hypersensitive pharynx, which will only improve with therapy and time; however, we are taking him to get an upper endoscopy done next week to rule out the other two possibilities.

I have also heard that ataxia is closely associated with feeding difficulties, so we are looking into seeing his neurologist soon and possibly sending him to an intensive feeding therapy clinic to discuss how else we can provide a more successful feeding environment for him.

Coming up in the next few weeks is another appointment with his developmental pediatrician and the psychologist she works with who will evaluate whether Mikan's continued delays will place him somewhere on the Autism Spectrum. John and I are encouraged by his continued progress despite persistent delays and doubt any diagnosis will be in the moderate-severe range if he gets one. We are uncomfortable with labeling him this early, but if a label provides him with more services he needs, then we are open to it.

Today is Mikan's first day back at school. Pictures to come. Hopefully without tears.

Wednesday, August 10, 2011

Shriners



On Monday we visited Shriner's Hospital in Chicago. Mikan met with a physiatrist, physical therapist, and speech therapist. We were pleased that the physiatrist had the same opinion as the doctor he sees in Indy. Basically Mikan doesn't appear to have too much spasticity (a trait typical of most kids with cerebral palsy). His core and extremeties are also pretty strong. His main problem is coordinating his balance. This doctor said he wouldn't even diagnose his problem as spasticity but rather ataxia. Because of this less common form of cerebral palsy, he reccomended we come back in six months to see a neurologist who may be more familiar with the condition. But overall it was good news. He didn't think Mikan needed any Botox, medicine, or surgeries to help him walk. He just needs therapy and time.

Mikan's gagging still isn't controlled, so we are meeting with an allergist next month to have him tested. None of his therapists or doctors seem to know what is going on.



Mikan at his last horseback riding lesson of the summer.



We had the massive sycamore tree removed from our backyard. The tree company that removed it said that the trunk was completely hollow and that you could walk inside of it. We will miss the tree, but not the mess it made, nor the fear of being crushed during a storm.




Wednesday, August 3, 2011

Physiatry Update



Mikan visited his physiatrist yesterday. Her evaulation was upbeat. She thought his trunk continued to strengthen. Last time she saw him in May he wasn't taking any steps on his own, so she was pleased to see his wobbling progress. She said he still exhibits plantarflexion (pointing of the toes) when he stands or holds someone's hand and walks without his AFOs. This means he is not quite ready for an AFO with a heel hinge that will give him ankle range to walk a little more naturally. Right now his feet are strapped into a 90 degree position to prevent the toe walking. She wants to give him about six more months to develop and then she will possibly reccomend an AFO switch. In the meantime she discontinued his derotation straps during the day and knee immobilizer at night for a trial period. If an awkward walking gait or any stiffness returns, we will go back to them. She also recommended a kind of stretchy tape that he would wear when his braces were off that is supposed to activate certain muscle groups that will encourage him to keep his balance better when he walks. She also wants water therapy to be a regular part of his treatment plan, since the resistance the water provides will provide proprioceptive input that helps his awareness of where his body is in space.

We also discovered at the doctor appointment that Mikan can write his name. We had seen him experiment with drawing a few letters, but he surprised us by grabbing a piece of chalk and writing it on his own.