Baby in the Bend

More Testing and Mikan's Free Time Continued...

2012-01-26T15:11:00.004-05:00

Mikan's developmental psychologist's office called to schedule his next visit. He will see her in early February. At this appointment, he will udergo formal Autism Spectrum testing. We've been told for the past three years that he has exhibited signs of being on the mild end of "the spectrum." I'm training myself to fully anticipate a PDD or Asperger's diagnosis so that at the least I can be prepared or pleasantly suprised after the visit. I'm gradually coming to the conclusion that the label won't change anything about him or our relationship with him. As he gets older, if his social skills don't improve, he may have the opportunity to participate in behavior therapy with a diagnosis. Or maybe we can teach him to count cards, and we'll take him to Vegas.

On the lighter side...Here are some activities Mikan has completed this week.

(It says "Bats are for playing." His English teacher mom is proud of the punctuation at the end of his sentence.)

I must admit that he did ask me to help him spell "Pierre."

When Mikan asked to put Anica's barrett in his hair, I decided it was time to cut the winter wool.

Apple Week

2012-01-21T14:54:00.004-05:00

We are trying a new feeding strategy with Mikan called Food Academics. We basically set up mini-lesson plans about a particular food over the course of a week. He will learn about the food related to our five senses, manipulate and play with it, create projects with it, read about it, and, hopefully, evenually kiss, lick, or even eat a little bit of it. This week was apple week. Although he never ate any apple, he enjoyed playing with it. I am going to take pictures of the different activities he completes and create mini-books about the week for him to look back at, hopefully generating more interest in interacting with that food in the future. Below are a few pictures from this week.

Another MAJOR milestone. Mikan is drinking from a different cup. As you can see by the last picture, it really isn't that different from his old cup, but this is still a HUGE improvement. In the past, he has refused anything that wasn't from his special cup. Yesterday morning we started with this refusal. I told him his other cup was broken. I wanted to see how long he would hold out, or if, in fact, he would starve himself and I would need to use the g-tube that evening. He began by throwing the cup across the kitchen, but he started eating more cereal. By the afternoon I was getting nervous because he still hadn't drank anything. I finally told him that if he wanted to watch Dora, he needed to take three sips from his cup. He finally caved and drank one sip, then told me he wanted to count in Spanish while he drank. We counted to "diez" and he finally realized that he was able to drink comfortably from it. We haven't had any problems since. I'm not sure this was the most therepuetically appropriate approach, but I am pleased with his low level of anxiety with this new introduction. My plan is to slowly introduce more cups and then return to working on different liquids.

Wordless Wednesday

2012-01-18T19:49:00.001-05:00

Pooping, Peabody, and Progress

2012-01-10T09:43:00.006-05:00

Mikan pooped for the first time on the potty! But the only reason he did was because I saw him straining so hard and I took him to the bathroom in time. In the past, we've never known until he was finished. Unfortunately, ever since we stopped using his g-tube, his bowels have suffered. He sees his nutritionist again next week for a weight check. I am praying he gains weight, because his pooping problems combined with another weight loss won't help our efforts to ditch the g-tube. His solid eating remains dismal. Pringles and cereal to be exact. But he is interested in other foods, so we are trying to take advantage of this and provide him with new experiences.

Mikan's PT has been pleased with his gross motor progress. She is excited to see how he works with his new braces. He should get the new AFOs in a few weeks.

Mikan's OT recently retested his fine motor according to the Peabody assessment. Four months ago his grasping ability was at eleven months. Now it is at forty. As his core strengthens, the rest of his body is falling into place.

On a side note, I welcome any suggestions to get our thirteen-month-old to SLEEP THROUGH THE NIGHT. I am convinced I am doing something desperately wrong. Mikan hasn't been sleeping great either, so we are all a little tired here.

Did your three-year-old ever tell you his dreams? Last night Mikan said he dreamt that he went to Egypt and there was a number four on the ceiling.

Another Physiatry Update

2012-01-04T12:52:00.004-05:00

Mikan enjoyed Christmas this year. Some of his favorite presents include a United States puzzle and card set, a World Puzzle, and a Handy Manny toolkit. He is getting good at identifying all of the coutries. He regularly studies the puzzle, reads the names, and asks us to quiz him. It is pretty amazing. His favorite song right now is "The Alphabet of Nations" by They Might Be Giants. Below is a video of him singing along with it.

Earlier this week we traveled to Indy for another physiatry appointment. His doctor was impressed with his progress. She reminded us that he was only taking a few steps at a time when she last saw him in August. She says that his strength has improved, he just needs to develop proper balance. She wrote a script for a new set of AFOs with a tether strap that allows more ankle movement to help him develop a more normal gait. She guessed that he might be in this new brace for another year before downgrading to an SMO. I thought she wouldn't consider an SMO for several years, so this was welcome news.

As John and I discussed Mikan's condition in response to her questions, she mentioned several times "You guys know too much." The first time we met her, she assumed I was a nurse because of the questions I asked. We get this a lot. Mikan's medical history has armed us with a vocabulary that allows us to communicate with medical professionals efficiently. Is this good or sad? Depends on how one looks at it.

But he had a good check-up, and we spent some time at the Children's Museum downtown during our trip. The kids loved it! Mikan's highlights were seeing Jupiter at the planetarium, maps of the world at several locations, playing in the water at the erosion exhibits, and sliding down the big Yule Slide.

Mikan in his element.

Mikan pointed out that this piece of the sarcophagus puzzle looks like Louisiana. I agree.

Wordless Wednesday: Christmas 2011 Style

2011-12-28T16:14:00.003-05:00

He Plays

2011-12-20T13:17:00.005-05:00

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.

First-Ever Toboggan Run

2011-12-11T19:36:00.007-05:00

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.

G-Tube Trouble

2011-12-03T11:25:00.002-05:00

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.

Happy Thanksgiving 2011

2011-11-26T20:22:00.004-05:00

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

Church

2011-11-20T14:34:00.004-05:00

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.

Sick Again

2011-11-12T15:17:00.004-05:00

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.

Mikan's Free Time

2011-11-06T15:04:00.004-05:00

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.

Happy Halloween 2011

2011-10-31T15:08:00.006-04:00

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.

OOOOOO Come On, Come On, Come On

2011-10-26T09:09:00.002-04:00

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.

Therapeutic Listening

2011-10-18T10:49:00.004-04:00

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.

Autumn 2011

2011-10-08T11:28:00.008-04:00

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

Sicknesses

2011-10-04T15:47:00.003-04:00

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."

Juu Cookie

2011-09-27T14:24:00.004-04:00

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.

Allergies, Pee, Poop, Rain, and Japanese

2011-09-15T20:54:00.007-04:00

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.

Hungry Boy

2011-09-12T14:53:00.006-04:00

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.

Developmental Pediatrician and Psychologist Update

2011-09-04T11:08:00.002-04:00

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.

Endoscopy

2011-08-28T13:22:00.002-04:00

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.

Wordless Wednesday

2011-08-24T13:50:00.003-04:00

Little Surfer Update

2011-08-19T09:15:00.003-04:00

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.

Shriners

2011-08-10T10:32:00.002-04:00

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.

Physiatry Update

2011-08-03T20:32:00.003-04:00

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.

Gagging and Princesses

2011-07-24T19:39:00.006-04:00

During Mikan's last ENT visit, we didn't learn anything new. She wanted him to try a higher dose of Zyrtec and then a nasal steroid to see if the drainage and subsequent gagging would cease. So far we have only increased the Zyrtec and nothing has changed. He still gags frequently (during meals and between) and refuses all solids. The ENT said if the nasal inhaler doesn't work, then she would refer him to an allergist. In the meantime, we are also looking into feeding clinics in central and southern Indiana. On a positive note, she said that because his sleep study was normal, he could finally get rid of the biox! That red probe has been attached to his poor fingers, hands, and toes for more than three years. When it finally leaves our house (as the last of several monitors), it will mark the end of an era of machinery.

This weekend we celebrated the adoption of my new sister, Sophia. My parents have acted as her foster parents from birth (three years ago), and now it is finally official. Although she's always been accepted as one of the family, it is exciting that we know she is here with us to stay. We are pleased my parents have unquestioningly cared for her when she needed it most and that she'll never have to worry about a stable home life in the future. So, Mikan is four months older than one of his aunts. I'm sure odder situations exist. Her adoption party included a Disney Princess moonwalk. Sophia liked that there were pictures of princesses, Mikan liked that it was a castle, and John liked that there was a basketball hoop inside.

Sophia and Mikan

Happy Birthday to Mom

2011-07-19T14:38:00.003-04:00

Last week's storm blew down a walnut tree in our neighbor's yard, which fell on our massive sycamore. Both caused damage to our wood shed and fence. John spent the past week cleaning up our backyard. Most disappointing is the fact that our now damaged sycamore will have to be removed. All of its gigantic limbs are now hanging over our house. It has nothing to balance on the opposite side. It's HUGE. Removal is not an easy task. We are still waiting for quotes from several tree removal companies. Our insurance company will pay for the damage done to our house if it falls during the next storm, but they won't pay to get rid of it ahead of time.

Mikan's gagging fits and refusal to eat anything except Pediasure continue. We see an ENT this week for help.

Yesterday during therapy, Mikan's PT said she didn't think Mikan had any overwhelming muscle or tone abnormalities. The quality of his walking is poor, but she thinks he has the ability to do it. He will walk short distances for us, but nothing substantial. He is still very unstable and prefers to hold one of our hands. We know it will be a slow process though. We return to Indy for an eval in early August, and we have our first Shriner's appointment in Chicago soon too.

Mikan's favorite game right now is pushing Anica down when she sits up. It's almost like a compulsion. If she's sitting up, he MUST go push her down and laugh. I told him he'd better be careful because she'll be strong enough to scoot around soon, and if she is anything like her mommy, then she isn't going to just sit there and take it from him. He really does love playing with her though. They will just stare at each other and giggle, then roll around on the ground and hug.

It's my birthday today. All I want from my kids is a tolerable dinner out that doesn't draw too much attention from strangers.

Mikan and Anica in her baby bathtub.

Swallow Study Results

2011-07-14T08:04:00.002-04:00

Last week John won two tickets to see Josh Groban in Indy from a radio show. He gave them to me as an early birthday gift since seeing a Josh Groban concert was on my bucket list. I took a friend Tuesday night, and we had a blast. I left Mikan with John, and my brother Zach who lives in Indy watched Anica during the concert. But my Mikan responsibilities returned early the next morning, and I made the three-hour trek back home with Anica at 5am to drive Mikan to his horseback riding lesson and swallow study.

Although initially hysterical at the sight of all the machinery, Mikan relaxed enough to drink Pediasure, a little water, and one Cheerio during the study. The results showed that Mikan drank his Pediasure and ate the Cheerio fine with no signs of aspiration. However, when he drank a large gulp of water, the water penetrated his vocal chords. He didn't aspirate, but it proved we still need to be cautious. The therapist reccommended we encourage him to only drink small amounts of water at a time. She also noticed that he tucks his chin when he drinks water. This is a strategy she teaches adults who have difficulty drinking since tucking the chin closes off the vocal chords and helps prevent aspiration. She thinks Mikan has learned to accommodate on his own. Since Mikan hasn't had a history of illness related to aspiration, we are hoping it won't cause him too much trouble, and he will outgrow it soon. She agreed that we should talk to his doctor about an allergy med since his drainage may be causing gagging and feeding delays.

We also think Mikan may be brewing a sinus infection. This would be his third infection this summer. We hope that once his seasonal allergies are managed this will go away.

This morning Mikan helped feed Anica her oatmeal. He didn't seem interested at all in trying it himself. In fact, after each bite he kept saying, "Anica's all done!" because he wanted her to play in a blanket tent with him. The speech therapist who read his swallow study repeated the mantra we've heard his whole life. "He just needs more time. Just keep the eating experience positive and don't push him. He'll get there." She didn't seem to think his six-month stagnation was a huge cause for concern. She said it was pretty normal. I think she meant normal for the abnormal. Right?

2011-07-10T16:51:00.004-04:00

Mikan playing at a park in Ft. Wayne that was designed for handicapped children.

We enjoyed the past week visiting with our families. We appreciated everyone housing the four of us and our endless stream of bags. Mikan spent a lot of time at the zoo, parks, and splash pads of Ft. Wayne.

Mikan picked one blueberry off of a bush yesterday and decided he'd had enough. I guess John will have to do most of the picking without the kids this year.

We received scheduling confirmation from Shriner's Hospital in Chicago. Mikan will be evaluated in early August.

This past week Mikan's eating has been terrible, and he has had several gagging fits. He will cough up clear mucus at times. My hunch is that this is related to an allergy problem, but I can't be sure. This gagging is assaulting his already meager eating skills, so we'd like to get it under control.

Last week John played a radio game and won 2 Josh Groban concert tickets.
So, since
a)Josh Groban is my favorite singer,
b)John makes fun of Josh Groban any time he hears him on the radio, and
c)my birthday is next week,
I'm using the tickets and taking one of my friends to the concert in Indy. Thanks John!

A Quick Update

2011-07-01T13:19:00.003-04:00

The kids are doing well and enjoying the summer. Mikan loves going to the beach and has finally gotten used to playing in the sand.

The Medical Front:

Mikan appears to suffer from seasonal allergies like myself. We are both a little uncomfortable lately, but he doesn't complain nearly as much as I do.

Mikan has a swallow study in a few weeks to check for thin liquid aspiration and any mechanical problems with his solid eating.

He has an ENT follow-up at the end of the month and a possible ear tube placement with another bronchoscopy in August.

Strawberry Season 2011

2011-06-27T16:27:00.003-04:00

We took the kids strawberry picking last week. I had a difficult time pulling Mikan away from the huge sign that read "Strawberries," but he did eventually sit in the field and poke at a few plants. His walker wheels were red when we left. At home he kissed and licked some berries and squooshed them on his plate. Last June I thought for sure he'd be eating strawberries by summer of 2011. Unfortunately, the only difference in our picking experience from last year was that now he could read the sign. Maybe next year.

Father's Day Weekend 2011

2011-06-21T15:32:00.003-04:00

We spent the weekend visiting family. Nina and Poppi graciously watched the kids while we got out and attended one of John's cousin's wedding. On Sunday, we drove to John's school to check on the orchard his students planted. Mikan enjoyed the big open space to run around.

Mikan's overall health is good. He's showing symptoms of allergy issues, but they don't seem to be bothering him too much.

His solid eating is horrible though. I have to keep reminding myself that his speech therapists have said that he won't make a ton of eating progress until he gains trunk stability, maybe after he learns to walk. His sensory issues are a constant roadblock as well. Some days he will only drink Pediasure. Actually, most days lately. We only use the g-tube for 8 ounces of water, but Mikan still won't eat anything that isn't dry or crunchy, and only when it's his idea, and usually when we are in the car. Usually during dinner he will sit and play with his food while he drinks his milk. Last night he spelled words with his lettuce. It was impressive.

Our biggest piece of progress is a game we play where we "kiss" our food. Or touch it to our teeth or tongues. He will participate, but he usually prefers his food to touch his chin. His nutritionist and developmental pediatrician want a repeat swallow study done to see if anything mechanical is causing him problems since his first one (at 5 months) was abnormal. I'm skeptical this will reveal anything new, but we're going to give it a try.

Sleep Study and Shriner's

2011-06-16T15:00:00.004-04:00

Mikan "holding" his sister

Mikan's sleep study results came back "normal." We haven't discussed them with any doctors yet, but it sounds like he may not need a tonsil and adnoid surgery, at least not yet. We are pleased with this news. "Normal" is often a word we don't hear around Mikan.

Mikan's gross motor progress remains slow. While he can hobble short distances around a room, I still wouldn't say he could walk yet. He is very unsteady, but he tries hard. We have a follow-up appointment with his physiatrist in Indy in August. We also just found out that his application to the Shriner's Hospital in Chicago was accepted. They have a large physical rehabilitation center where Mikan will receive treatment. We don't know much about the process yet. Right now we are trying to collect as much information as possible to make sure we are doing everything we can for Mikan.

So far Mikan hasn't passed two hearing tests because of constant fluid retention. This will most likely spell tubes soon. We have been able to avoid them this far because he doesn't get too many infections. However, since he can't seem to pass a hearing test, this seems to be the logical next step. His speech is really starting to take off, but we wonder how much more he could be doing without the fluid. We have an ENT appointment to discuss this next month. We aren't excited about another surgery; however, this should be a cakewalk compared to what Mikan has already endured.

The 'F' Word

2011-06-15T21:30:00.003-04:00

At the top of the slide at the park, he pointed to the word etched in the green plastic, leaned close to it, and read it aloud. Then he said, "mamma read it!". I didn't read it. I told him it was a bad word. But he doesn't understand what that means. He just kept reading it.

But, our son can read.

So, f off.

Seeing Summer

2011-06-09T19:46:00.004-04:00

Currently, I am doing research at Notre Dame to study retinas of zebrafish. Which is pretty cool in itself, but especially interesting considering Mikan's retinopathy of prematurity. Zebrafish can regrow damaged retinal cells, and have retinas with very similar structure and function to human retinas. Therefore, scientists study these fish with the hope of being able to treat humans with retinal issues.

I think Mikan's vision issues have had a huge impact in his development. Whenever Mikan reads words and books that are beyond his age, I credit it to his vision problems. Mikan's visually clear world is up to about 8 feet away from him. Books and words are within that world. Other distractions are limited. I think he likes reading because he can't see well. And who knows what he'll be able to accomplish because of an affinity for reading that he would not have otherwise been able to do?

I don't personally know anyone besides Mikan that has retinal problems (that I know of). I know Stevie Wonder is blind because of ROP. I wonder if he would have developed his musical talents as much if he could see.

So, by doing research and treating people with non-life threatening issues are we taking away potential gifts that only surface when humans are forced to adapt to difficult situations?

It comes down to this...

"Does Stevie Wonder want to see?"

I'll assume yes. But maybe not. So let's keep researching.

My favorite Stevie Wonder song...

My seond favorite Stevie Wonder Song...

Might there be more racism in the world without Stevie Wonder's ROP?

First-Ever Family Camping Trip

2011-06-04T14:42:00.003-04:00

We took the kids on their first-ever camping trip. It went surprisingly well. We may actually do it again sometime. It probably helped that our expectations were very low with a 3-year-old and five-month-old. Mikan loved it and wanted to begin sleeping in the tent as soon as it was set up. We camped at a site within walking distance to the beach, so we set up camp and took the kids to see the water. Mikan wanted to swim in the water, but then quickly changed his mind when he realized how cold it still was. Below is a brief slideshow from the trip.

We've been trying to take Mikan to the grocery store with us as often as possible because he seems to eat what he picks out. His diet is still extremely limited, but if he picks something out he likes in the grocery store, he usually will eat it at home or in the car, or at least lick it. Below is a video of our little grocery shopper. Unfortunately, giving him some independence in the store often means that anyone else who shops there gets a few Mikan germs on their produce.

Sleep Study and Goats

2011-06-02T06:48:00.005-04:00

Last weekend Mikan celebrated his cousin Tyler's second birthday with some slip 'n' slide fun. We also went to the zoo on Memorial Day.

Tuesday night Mikan had his repeat sleep study to check for signs of sleep apnea. John spent the night with him and he reported that Mikan was "outrageous" for about an hour and a half while they tried to stick all the probes on him. He returned home with a bloody nose and goop all over his head. We don't know when to expect the results.

Mikan has finally begun to drink a little water. We make him take a drink of water before he gets his milk. Now it's a routine for him, so he'll take an obligatory sip or two everytime he asks for milk, and then he'll say, "All done drink of water," and pushes it away. At least it's a start.

I think Mikan's favorite part of the zoo is being able to pet and brush the goats. Below is a video of him trying to keep up with them.

Wordless Wednesday: More

2011-05-25T14:12:00.002-04:00

Wordless Wednesday: Our weekend in pictures

2011-05-25T14:03:00.002-04:00

Meet Dorothy

2011-05-20T13:13:00.002-04:00

Meet Dorothy. Mikan's first pet. Dorothy is actually a male, but Mikan doesn't care. He/She is named after Elmo's pet goldfish, and Mikan loves her. Mikan thinks Dorothy likes the states as much as he does, and he has offered to drop some of his states puzzle pieces and magnets in her bowl for her to look at. Yesterday he fed her a piece of rice cake. She's not floating at the top yet, so no harm done that we can tell.

Earlier this week we visited another opthamologist who said that he would prescribe an even stronger prescription than Mikan's old glasses. He wants us to try and encourage Mikan to use his old ones when he is looking at things far away, like in the car, or at the zoo. When we've tried switching back to the old glasses in the past, he resisted us, so we didn't push it. We are going to make an effort to switch them more often now. The doctor said that the strength difference isn't earth-shattering though, so if Mikan hates his old glasses, then we shouldn't force him to wear them. Like we could anyway.

The opthamologist explained that even though near-sightedness deteriorates slowly with age, because kids have an ability to hyperfocus, strong lenses shouldn't hurt his near vision until about age 10. However, he did say this was an estimate and weaker lenses wouldn't hurt his vision, he may just not be as functional. So our goal is to try and figure out with which pair he maximizes his functinality at specific times, and then encourage him to use the appropriate pair accordingly. Mikan did fall asleep in the middle of the eye exam, so the doctor admitted his prescription was a little bit guesswork.

I've been starting to feed Anica cereals and purees. I hope this gets Mikan more interested in eating. I let him watch me feed her and then show him the empty bowl. So far it hasn't translated into him consuming any more, but he did grab her spoon and hit her in the mouth a few times with it.

He's a Big Boy Now

2011-05-16T08:21:00.002-04:00

Last week Mikan and Anica watched me finally graduate with my Master's Degree in English Writing. Well, they caught glimpses I think with John as he tried to keep everyone fed and entertained during the two-hour ceremony. The iPad helped I think.

We will see a new pediatric opthamologist soon to obtain a third opinion about Mikan's sight. We are trying to isolate all of his vision deficiencies that are a direct result of his ROP, if possible, so that they don't get caught up in an ASD diagnosis, if it ever comes to that.

Mikan has some exciting news to report from this weekend. Now he is out of his crib and in a toddler bed. The transition to the "big boy bed" was fairly seamless. I expected a huge fit, especially since the crib is still in his room, but he hasn't even acted like too much is different about it. The next morning after we put him in it, we found him on the floor though. And in the middle of the night last night, John found him half-off with his head and chest on the bed, but his legs on the floor. Oh well, it's not high enough for a major disaster.

Furthermore, Mikan went pee on the potty two times. This is a huge accomplishment; we were beginning to wonder whether he had any awareness of anything going on down there. He still has a long way to go before he is "trained," but we are pleased that this is another transition he doesn't feel anxious about.

And finally, this weekend he took his first guitar lesson from Grandpa.

A Post Two Years in the Making

2011-05-13T14:41:00.002-04:00

A little bit farther down the road to "normalcy," whatever that word really means. It doesn't mean so much to us anymore, and I'm not convinced it's something we even strive for in all of its nuanced societal expectations. We only use the word as a marker for the rest of the world when we communicate Mikan's progress.

That being said, it seems like Mikan is finally making some gross motor progress. This video illustrates more than a controlled fall, something we have been awaiting a long time. It's been two years now that we have been thinking Mikan was "a couple months away" from walking. We've learned to no longer make these predictions, but this video shows some exciting new coordination we haven't yet witnessed. He'll get there. He's learning early that hard work reaps great rewards. Watch out Usain Bolt. Here comes Mikan Boy.

Adenovirus

2011-05-08T09:31:00.003-04:00

Mikan has been suffering through an adenovirus for the last several days on top of his double ear infection and sinus infection. He's had fevers between 100 and 103.5 since last Thursday. His doctor said this virus could give him fevers for several days. It seems like Mikan has been sick for nearly a year with one thing or another. I hope this means he is building up immunity for years to come. When Mikan is really sick, the only thing he wants to do besides cuddling with Mom or Dad is to watch either Signing Time or a Leap Frog DVD, or play with his states.

Our little genius studying his states.

Zoo Trip

2011-05-03T12:02:00.003-04:00

This weekend Mikan visited the zoo. He is at the perfect age for it. He kept asking to ride the goats, but unfortunately we were only allowed to brush them and feed them. He also wanted all of the animals "out." Perhaps we have a little anti-captivity officer in the works. I think he was only a little disappointed we didn't get to see a panda. He had an affinity for the donkey though and kept leaning in to kiss it. Below is a short montage of the weekend trip.

Mikan is recovering from a double ear infection and sinus infection this week. Now that Augmentin is on board, he is doing much better.

Mikan's preschool teacher is switching him to a new classroom in the fall. She says his cognitive skills are higher than the rest of the kids in his class, but his socialization is behind, so she is putting him in a class with kids who have more advanced social skills so he can have good peer models. The curriculum will also be a little more challenging. Movin' on up.

Singing and Studying

2011-04-27T13:19:00.005-04:00

After a long trip in the car, Mikan gets a little stir crazy, but puts the energy into his new favorite song (After "The 50 Nifty United States" of course).

This clip is from the waiting room at the physiatrist's office.

Ever since we dug out for Anica a Bumbo chair we borrowed from some friends when Mikan was young, he has been fixated on sitting in it. And he demands we squeeze the tray on too. I'm not sure what if it hurts or helps his sitting at this age. Oh well.

Although I signed up a while ago, I've just started exploring BlogFrog. It's a site that allows bloggers to communicate with each other within an established community. For example, anyone who follows this blog can communicate with anyone else who reads it inside of my Baby in the Bend Community. You are able to communicate with more people than just the blog author. I've set up two communities located on the left side of this page. I'd love for you to join them and reply to my discussions or start your own. You don't have to have experience with a special needs child to join my community, just an interest in this blog.

A wonderful new respite care facility in our area has asked people to sign a petition to stop new Medicaid legislation that would cut or eliminate nursing for those on the Medicaid waiver. The Medicaid waiver allows children with medical issues to be a part of a revised Medicaid program even if the parents' income exceeds the normal alloted amount for the traditional Medicaid program. Right now Medicaid waiver pays for Mikan's nursing. We are fortunate enough to be able to have one of us remain at home to care for Mikan if we didn't have nursing, but many families cannot manage this. If these funds are cut, medically fragile children may be forced into institutions if families are unable to care for them at home. Please visit the petition website and sign it so that more children will be able to heal at home.

Easter 2011

2011-04-25T13:52:00.004-04:00

Happy Easter to everyone! Mikan's Easter egg harvest wasn't as fruitful as his cousins'. The video below partially explains why.

Nevertheless, Mikan enjoyed playing outside, the annual stick racing, and eating chocolate.

Soon we will be taking Mikan to see a new pediatric opthamologist in town. Since we received such differing opinions from his past eye doctor (who wasn't very open to discussing any new approach) and vision therapist, we thought a third opinion may be helpful. I think that clarifying his vision issues will help us eliminate one of the variables contributing to his developmental delays.

Easter Egg Hunting at Grandma and Grandpa's house

Mikan with some cousins

Mikan with the cross he grew attached to at Easter Mass

Anica thinks Mikan's smile means he's up to something.

Assessing the loot at Nina and Poppi's

Chicks

2011-04-21T08:39:00.007-04:00

These pictures were taken by my former student Tara. She's taken several beautiful pictures of the kids for us, and her skill set is quite eclectic. Her portfolio is pretty impressive. You can check out her website if you are interested in seeing more of her work. Some of Anica's pictures are on the site under "special" and "babies." Mikan loved playing with the chicks. He kept ordering the chicks around during the shoot, saying "Chicks down!" or "Chicks on table!"

Mikan's repeat sleep study has finally been scheduled for the end of May. He failed his last sleep study, but not miserably enough to prevent him from being decannulated. Because the study was done with a capped trach, the ENT said that we may have received skewed results. The neurologist wasn't so positive though. He needs a repeat study done to determine whether he really has sleep apnea, possibly needing his tonsils and adnoids removed, or if the poor results were merely due to his capped trach. I'm struggling to remember anything positive about our last sleep study experience. They gave us free orange juice in the morning?

For the last week, Mikan has only eaten cereal and Pediasure. He isn't interested in anything else. This eating journey is long, tedious, and full of dead ends. I know. He needs more time. And more therapy.

However, Mikan is doing great in school from what his teachers say. One of his nurses overheard an aid helping him fill out an "all about me" sheet. He was supposed to fill in the blank "When I grow up, I want to be a ___." When the aid asked him what he wanted to be, he didn't respond. So she decided his silence meant "firefighter." That made me laugh when I heard the story from his nurse. I wonder how many worksheets I brought home from preschool that were completely fabricated by my teachers.

But Mikan's anxiety at school has decreased. I can say "goodbye" and the door, then his nurse walks him to the classroom and says "goodbye," and he goes with his teacher for the rest of the day and participates in everything he is supposed to.

Happy early Easter to everyone. God bless.

March for Babies 2011

2011-04-18T14:29:00.002-04:00

I'm not sure what they're looking at. It must have been cool though.

On Saturday we walked to support all babies born too early or with unexpected birth defects. We really appreciate everyone's generosity this year. Thanks so much to everyone who donated to our team, helping make sure more babies are born healthier than Mikan was. With your support, Team Mikan Boy raised over $1000. The weather was crummy, but we persevered through the 4 mile walk and enjoyed the free food afterwards. I walked with the kids, Mikan's nurse, Nina, Nina's goddaughter Anna, and Cousin Maria, and John attended a conference in Indy for parents of blind and visually impaired children.

His anxiety/clinginess to Mom isn't fading yet. Is this a phase? He gets upset even when we're at home and I leave the room he's in. I hope he grows out of it soon. Mom's a little tired of it.

Mikan has been hobbling short distances by himself, nothing really stable, but he is definitely making some gross motor gains. I look forward to a day sometime in the next several months when I can post walking video. Then again, I've thought he was a couple months away from walking for the last two years.

Glimpses of Progress

2011-04-11T14:21:00.006-04:00

Mikan and Cousin Jack on the iPad.

I'd like to make one final push for the March of Dimes. We walk this weekend to remember many babies born too soon, celebrate their lives, and maintain an optimism for better outcomes. If you'd like to donate to Team Mikan Boy and support the March of Dimes, please click on the link in the left margin of this page. Help us make sure more babies are given the chance to live that Mikan was and even more are born healthier than him.

Well we couldn't have been more pleased with Mikan's last physiatry appointment. The doctor said although Mikan still isn't walking, she thought he was finally ready. His nervous system is mature enough to walk independently. More relieving was the news that she thought he only needed more therapy and more time (no medicines, botox injections, or surgeries). "More therapy" and "more time" is a very familiar mantra to us, and we aren't too naive to understand that although we've been told this, it doesn't always turn out to be all that is needed; however, we have to cling to something. We have noticed some improvements with his sitting and cruising. I saw him stand up from a sitting position on an outside step and grab his walker all by himself for the first time yesterday. He also grabbed a railing and caught a little bit of air when he tried to jump. This is huge progress after months of stagnation. The doctor reccommended some water therapy, so we are looking into finding a public pool for him this summer.

Mikan's cognitive skills remain sharp. Last night I asked him some of the state capitals on a whim. He could name the capital of every state I quizzed him on. The miracles of YouTube.

Often when Mikan sees me carrying around Anica, his reaction is to yell "BABY DOWN!" and flail his limbs and spin in circles on the floor in a full-fledged tantrum. From what I've been told about John's toddler years and time spent in the department store with his mom, Mikan may come by it honestly. But this weekend he spent a lot of time in her face saying "Hi Anica" and giving her kisses and knuckles. That's a little refreshing.

I'd like to thank Geoffrey Chaucer for aiding both of my children in exersaucer stability before they met the product's official length guidelines. How could he have known the plethora of practical benefits Canterbury Tales would bring? My Chaucer professor would be happy he isn't collecting dust on my bookshelf.

Spring Break-Physiatry Appointment

2011-04-08T10:05:00.004-04:00

When Anica is on her belly and tries to move around, Mikan says, "Anica crawl." Then Mikan shows Anica how to crawl. Mikan now jazzes up his crawl with ribbiting like a frog and jump like a frog. Thanks Hopkins.

Mikan and me reading in our tent before bed.

Mikan at Hinkle Fieldhouse. Championship game for the movie Hoosiers. Home of the national runner-up Butler Bulldogs.

Mikan's spring break has been pretty low key.

Monday-three therapies
Tuesday-One doctor's appointment, for a hearing test. But his ears had some fluid, so we'll have to redo it again later.
Wednesday-WIC appointment. He cried as we left because they had puzzle of the states.
Thursday-Indy Physiatry Appointment. He did a great job without a nap. The doctor wants to withdraw some of the night bracing to see if his gains over the past three months can be sustained without the night bracing.
Friday-Cousin morning visit. "Jack Jump. Jump Jack."

Straps

2011-04-03T13:39:00.003-04:00

Mikan has these straps that start around his waist and twist around his legs until culminating by attaching to his shoes. These straps are supposed to prevent him from toeing inward while he walks. They are called derotation straps. They pretty much remain covered by pants. I hadn't heard of them either.

Well, at a party this weekend they came a little unstrapped while Mikan was cruising around. An old lady was like, "You need your shoes tied!" So she chased him down and tried to tie them like laces. Then she realized they weren't shoe laces. I just said, "You can tuck them into his shoes." She looked at me and said "Okay."

I didn't explain what they were. I'm not sure how much to explain to people who we'll probably not see again. I also wonder what she thought they were.

John

Hat Parade

2011-03-24T14:43:00.003-04:00

Mikan has a Spring Hat Parade at his school tomorrow. He was supposed to make a hat to wear around the school in a parade. Since he refuses to wear anything on his head that isn't a winter hat, we were forced to deocrate one of those. He wanted states and numbers on it. He chose Michigan, Wisconsin, and Texas for whatever reason. Those were special states to him this week I guess.

I didn't have a lot of ideas for ways to attach his favorite things to his hat. I'm sure once I see what other moms did, I'll do better next year. Good thing he doesn't care yet whether or not he has packaging tape wrapped around his head. And hopefully he's too young for people to be making fun of him.

He really enjoys identifying states. He recognizes most of them on a map, by name, and by shape.

School is going better. He is still a little anxious and asking for mom or one of his nurses at times throughout the day, but I think he will adjust soon. He enjoys all the activities they do with him.

We have a follow-up appointment with the physiatrist coming soon. She will assess his range with the new AFOs and determine the next course of treatment. We are looking at alternatives to Botox right now, so we are hoping she doesn't reccommend it at this point. We are pleased with the progress he's made with the new braces. While he still isn't walking, his flexibility seems to have improved, and we're optimistic that with a little more time, he will gain strength. Just a little more time.

Back to School

2011-03-08T20:56:00.003-05:00

Last week was Mikan's first day of preschool. We practiced with him for about a week on how to say, "Goodbye, Momma." When it came to the actual time, he knew what was supposed to happen. However, it was a little chaotic when he was in the hallway on the way to the room. So, he started to get anxious. Jenna was talking with the teacher right behind him. Mikan started deep breathing and spinning with his walker asking and signing for "Momma." Then Jenna squatted down and told him he was at school and with his teacher. After that Mikan continued crying and through his tears said, "Bye Bye Momma." Jenna then gave him a kiss and left.

Word is he calmed down shortly after but cried on and off throughout the 2.5 hours. He participated in most of the activities. He did not want to sit on the potty. But, he made a dinosaur picture. He ate Cheez-its during snack time (a favorite). He got to hold up a stop sign during a counting song. During gym time, the other students were fascinated with his walker and followed him around.

Jenna and I weren't there. Mikan's nurse was. I am dictating what Jenna said. I just wanted to get it all down while it was fresh. Mikan did talk about some of the things he did once I got home. He appears to be excited about school.

Really, three years already? Really?

Happy Birthday Mikan Boy!

2011-03-08T13:41:00.001-05:00

On March 5th, Mikan turned 3. We're so proud of how far he's come. On Sunday we celebrated Anica's baptism and Mikan's birthday. If you have four minutes to spare, enjoy the montage of his past week. Near the end of the video, when he falls while trying to cruise on our bed, notice how he picks up one of his dad's socks from the floor and uses it as a kleenex.

Photo and video editing at www.OneTrueMedia.com

New AFOs

2011-03-04T16:00:00.003-05:00

Mikan got his new AFOs. We chose letters and numbers so he'd be more excited about wearing them. He also wears a knee immobilizer (with a Charlie Brown pattern) with one of the braces at night to give him an extra stretch while he sleeps. He tolerates it ok now, but when he wakes up, he immediately says, "Brown off!" He walks more awkwardly with the AFOs because they completely restrict any movement in his feet. He can't point his toes like he wants to. This restriction is supposed to force his hips to rotate and strengthen so that he can begin to develop a normal gait. So far he is still adjusting to the new restrictions, we haven't yet noticed a difference; however, he does seem to stand with more stability independently. We follow-up with the physiatrist at the beginning of April to check his progress.

Beginning next week Mikan starts his clinic therapies and preschool. He gets ST, OT, and PT several times during the week at a clinic and then he also gets those services at his preschool along with vision therapy. I think going to school will be good for him. He needs to be around more of his peers. His case conference was a little depressing though. He basically qualifies for every single service imaginable. He has developmental delays in everything except cognition. He's come so far though it's hard to look at the delays as negative.

Tomorrow Mikan turns 3! Sunday we are having a combination Anica baptism/Mikan Sesame Street birthday party. I am making the cakes. If you remember the disaster dinosaur cake from last year you'd probably know this isn't a good idea. Practice makes perfect though :) I'll post pictures.

Autism?

2011-02-25T14:37:00.005-05:00

Mikan visited a developmental pediatrician on Wednesday. We are trying to figure out if Mikan's delays are due to his prematurity, his poor vision, his sensory issues, his cerebral palsy, his little exposure to peer socialization thus far, or if he may be on the autism spectrum. The doctor agreed that because he has so many variables to possibly explain some of his questionable symptoms (fleeting eye contact, lack of imaginative play, not sharing his attention with us enough, etc.), it would be unwise to diagnose him at this time. She wants to give him a few months in school and reevaluate with a psychologist. However, she did say that if he didn't have the medical history, vision problems, or sensory processing disorder, his behaviors are definitive enough to place him on the autism spectrum. If he is diagnosed, it would be a provisional diagnosis until he is 5 or 6, and he would be reevaluated to see if the label is still accurate.

We are optimistic that his symptoms are mild enough to be treated early. We've just been feeling a little overwhelmed lately. We've been told for the last few years by several doctors that there wasn't any reason not to believe Mikan would outgrow all of the delays caused by prematurity. This seemed miraculous given his beginnings, but we believed it with each piece of progress he's made. In the last two weeks, we've discovered that he not only has cerebral palsy, which will need to be monitored carefully for the next several years (requiring additional bracing, and possibly botox injections, surgery, and casting), but that he may also be on the autism spectrum. Mikan engages us a lot, and doesn't fit our typical picture of an autistic child, so we are trying to implement therapies to help him with socialization.

I really thought his schedule would slow down as he got older, but everything is getting more intense. Beginning in March, Mikan will go to a clinic to receive OT twice a week, ST twice a week, and PT once a week. He will also be attending preschool. The developmental pediatrician also wants his hearing tested and a repeat sleep study done since his last results were abnormal (with a capped trach). More testing. Deep breath. Whatever God has in store for us, we'll embrace.

New Glasses?

2011-02-20T14:41:00.003-05:00

Mikan has been wearing his new glasses for several days now. I'm not sure I've noticed too much of a difference yet, but I'm optimistic that maybe we will soon. He is supposed to use these for close up, and his old ones for distance. It's hard to figure out what is best for his eyes when he can't quite communicate yet what he sees.

The above picture was taken before his "winter wool" was buzzed off. Lately he has an evil grin that he gives his sister whenever she is crying...like delight in the fact that he may have been the cause...

The Daytona 500 is today. It will forever be burned in our memories as the anniversary of my water breaking with Mikan at 25 weeks. 3 years ago. He's come a long way.

A Diagnosis

2011-02-11T22:05:00.003-05:00

I drove Jenna and the family to Indy on Thursday to see a pediatric physical medicine doctor (physiatrist).

The physiatrist did not hesitate to connect Mikan's walking issues with the scarring shown in an earlier brain MRI. And because the scarring took place before the age of two, it is called cerebral palsy. To be more specific, dipelgic (two limbs) cerebral palsy.

Because he was not walking yet, we pretty much saw this coming. Except for the fact he had had two MRI's and both were read to be negative for CP. The previous readers of the MRI must have thought the scarring was inconsequential. The specialist we saw on Thursday did not agree. The specialist also wants to change the bracing used on Mikan's legs (more aggressive with AFO's and braces designed to handle his level of muscular spasticity). Hopefully, these interventions hurry the progress.

The specialist did note how mild the CP, and spasticity were. He has pretty decent range of motion, weak lateral leg motion, and a tight calf muscle. Therapy, and perhaps a botox shot are the current remedy.

For those of you who knew me as a kid, it looks like I passed on my spasticness to my son. Do boys first learn to pee standing up?

We're Off to See the Wizard

2011-02-04T14:20:00.001-05:00

This April we are walking to support the March of Dimes. Please help more babies like Mikan have a chance at life. You can click on Mikan's picture on the left side of the blog to view our fundraising page. Any donation helps. Thanks for your support!

We took Mikan to get his new set of glasses this week. He hates other people putting things on his face. He had a few meltdowns. I think the Eye Center was pleased when we left. Anyway, the glasses should come in within the next week. He will use the new glasses when he is inside mostly and maybe for school. We will use his current glasses when he is looking at things farther away outside. The optometrist said he will get used to switching and it will become obvious when to use which pair. Too bad he can't just get progressive contacts.

We see the physiatrist next week. We are hoping for some answers. Right now I feel like I am treating this person like the Wizard of Oz. I am hoping she is more than a man behind a curtain. Or else she gives us some great advice like the Wizard gave Dorothy and Friends, like "Mikan's had the ability to learn to walk this whole time, he just needed to look inside himself."

More playtime with Dad.

Photo and video editing at www.OneTrueMedia.com

Vision Problems

2011-01-28T12:30:00.003-05:00

Mikan giving his sister "knuckles."

Mikan and the OT

This week Mikan visited a vision therapist and optometrist that his OT reccommended. Mikan has difficulty with fine motor skills and doesn't like to make eye contact when people are close to his face. The doctor said that Mikan has a congenital nystagmus (shaky eyes) that will probably always affect his vision, never allowing him to ever see 20/20, even with a corrective lens. He also has difficulty moving his eyes from side to side deliberately without moving his entire head (Right now we are developing exercises where someone holds Mikan's head in place while someone else runs back and forth in front of him). The doctor wanted Mikan's glasses prescription to be cut in half, enabling him to see better in the 1-2 foot range in front of him, since that is where most of his world is right now. His current glasses correct his distance vision, but because they are so strong, they make his close-up vision blurry. We've always known this, but the opthamologist we've been seeing said that he would learn to look over his glasses at things close-up. Well, he doesn't do that.

The new doctor we saw said that Mikan's brain is under too much stress trying to focus on things close-up, and he is not allowing his eyes to learn how to work in a 1-2 foot radius. So we are going to try getting him a new pair of glasses. He will wear the new pair most of the time, but we'll keep the old ones for him to use if we want him to look at things at a distance. Mikan doesn't know what it is like to see clearly, so he just doesn't complain.

In the next few weeks, Mikan will be assessed for ST, PT, and OT for his preschool services as well as at an outside clinic (since he is graduating from First Steps home therapy program in March). His schedule is getting a whole lot more complicated, but we're happy to see his progress, especially with speech lately.

We are also making a couple trips to Indy this month (we finally got to schedule them.) We are hoping to get some answers about Mikan's walking and poor core strength.

We think Mikan will love preschool. He knows all of his numbers and letters and practices sounding out words and reading his books. His speech is starting to become more recognizable to people outside of the family, so he won't have to rely so much on sign language to communicate with his teachers.

Winter Indoor Fun

2011-01-22T20:21:00.000-05:00

Lake Effect Event and AFO shells

2011-01-11T12:06:00.004-05:00

South Bend had record breaking snowfall this weekend (39 inches). We didn't get as much, but we had plenty.

The picture above was taken from our front door. We got 10 more inches of snow that day after I took the picture.

Mikan's AFO shells finally arrived. They fit over his SMOs and restrict his toe/heel movement so that he will stay off his toes and hopefully establish a more natural gait. I can already tell a difference in his walking. The shells seem to give him more stability than the SMOs alone. Hopefully this will give him the support he needs to finally be mobile without his walker. The walker we've been using is on loan, but we also finally got insurance approval to purchase our own (it took about five months), so we've just ordered one. We have no idea how long he'll need it, but it allows him to be semi-independent for now.

Mikan is adjusting well to life with a new little one. When he sees Anica's little fists balled up, he'll crawl over to her and pound his fist with hers; its his brotherly greeting.

PDD or Normal/Quirky 2-year old?

2011-01-06T12:07:00.004-05:00

We don't have a lot of news to report for the new year. We finally scheduled an appointment with the physiatrist for February, but are still waiting on the developmental pediatrician. One of Mikan's therapists mentioned that she wouldn't be surprised if the pediatrician dignosed him with PDD (pervasive developmental disorder).

PDD is a group of delays in communication and socialization that are often associated with autism. He doesn't display definitive characteristics of any one syndrome, but his "quirkiness" overlaps with several conditions. Right now we are just watching everything, but it is hard to distinguish what is delayed due to prematurity and what is merely a personality trait vs. a symptom of a disorder. I'm going to call him a normal two-year-old for now.

On a different note, please pray for little Maggie. Maggie and her family follow our blog and we've followed hers for awhile now. Maggie's mitochondrial disease is weakening her body and she could use some extra prayers from anyone willing. You can read about her on her blog http://michelleagnew.blogspot.com/

Christmas 2010

2010-12-28T19:28:00.003-05:00

We enjoyed Christmas at home this year. Many relatives came to visit, relieving us of the inconvenience of traveling. Mikan still doesn't understand the excitement behind opening gifts, but he enjoys playing with the new toys once they appear.

Lately he is especially interested in letters and numbers. One of his therapists mentioned hyperlexia, a condition often associated with autism where a child exhibits a fixation with letters. They will often have above average reading ability or letter recognition, but poor comprehension skills. Mikan isn't severe enough to be labeled with this condition, but it is one on a long list of things we are watching out for and trying to manage as he develops. John thinks it just means he will be really smart and eventually become a world leader.

It has now been almost six weeks and we still haven't been able to schedule
Mikan's appointments with a developmental pediatrician and physiatrist. Don't even get me started. The schedules for these specialists are ridiculous. I'm hoping to take care of it by next week.

So far over break Mikan has enjoyed sledding or rolling down hills with his dad and cousins. He doesn't seem to mind the cold (definitely a Gensic trait).

Home Sweet Home

2010-12-17T14:29:00.003-05:00

"You mean, she's coming home with us!?"

Well, Baby Anica is a whopper. Despite the soreness from the C-section, I'm still glad to have the pregnancy woes behind me. Mikan has been doing well with the adjustment to siblinghood. He mostly just ignores her, but at least he isn't unhappy or angry about her presence. He is trying to learn her name, which sounds more like "Ah Kah" right now. Our first night at home was pretty typical. I got about three hours of sleep. This whole caring for a newborn without a bunch of tubes, wires, equipment, and alarms thing is pretty odd, but we're adjusting. She is nursing and pooping well.

A big thanks goes out to my mom who stayed with Mikan and entertained him this week while helping us around the house and with the transition home. We appreciate all her help.

We are still waiting to hear from a physiatrist about when Mikan's walking can be evaluated. My mom said that this week one evening he "forgot" he couldn't walk and got excited going after a toy while he was standing. He took a few steps before falling. Maybe his confidence is beginning to grow. Maybe having another baby around will be motivation for him. Hopefully he'll want to walk before she walks!

Mikan has a Sister!

2010-12-15T06:57:00.004-05:00

Anica Mary is doing well. Born Monday morning at 7:29 Eastern, 8 lb 3 oz. and 20.5 inches. Mikan is coming around to understand what is going on. Jenna and Anica and getting along normally.

He Can Read!

2010-12-05T14:01:00.002-05:00

Mikan made a gingerbread house during Story Hour at the library. Well, he mostly just ate the cereal and chocolate and crackers while his nurse and I made it.

We are in the middle of a Lake Effect snow storm here and Mikan is taking advantage of the freshly padded sidewalks. For his inaugural sled ride he requested that Elmo ride along with him.

Mikan has been battling diarrhea on and off for the last three weeks. He is having his stool tested this week to see if he needs an antibiotic. Poor kid can't keep anything in his stomach. Thank God we have the g-tube and don't have to worry about dehydration.

Mikan has been obsessed with numbers and letters lately. He can sight read a lot of words now and he even tries to spell them with some of the play letters that we have. I'm amazed at the new things he does/says every day.

Make an on-line slideshow at www.OneTrueMedia.com

Tomorrow we see the orthotist to have his gait tested for new braces, hopefully ones that he can't overpower. He wants to walk. Unfortunately, we will probably be unable to get him in to see a developmental pediatrician or physiatrist at Riley for another couple months. I've been on the phone trying to schedule these appointments for the last two weeks. It's amazing how long it takes to see a schedule an appointment with a specialist much less wait to see him/her.

Thanksgiving Week 2010: Stoma Revision

2010-11-27T15:58:00.003-05:00

Surgery Center Waiting Room

Waiting for surgery with Dad and the ipad.

Mikan's stoma revision is complete. As soon as we entered the outpatient surgery center, Mikan started crying. He refused to be weighed or sit still for a biox reading. Whenever anyone in scrubs entered his room, he tensed up, waved at him/her, and said "Bye bye." After the surgery we couldn't calm him down until we left the hospital. His first words waking from anesthesia were "Mom" and "Bye bye." I hope it's awhile before we have to take him back for anything.

The actual surgery took a little longer than anticipated because the ENT noticed a cyst she had to remove on his stoma. She thought it looked harmless, but sent it in for testing just to be sure. He now has three rows of stitches to seal up his airway. The incision looks nice and clean; it's just a straight line. No one would even know he had a trach. Later, he can make up a story about a knife fight or something.

We had family visit us for Thanksgiving, so staying at home was nice. I'm becoming less mobile each day, so keeping close to our house is important.

Last night while John and Mikan were wrestling, Mikan fell and broke his glasses. They had a good year and a half run though. Right now electrical tape is holding them together. It blends nicely with the frames.

Mikan playing "nurse"

Mikan decided to taste peppermint only after he made his horse a peppermint treat at the Riding Center.

Forrest Gump

2010-11-18T15:18:00.003-05:00

We saw Mikan's orthotist yesterday (who happens to be the inventor of the SureStep SMO) because he was having problems developing sores on his feet from the braces. When he stretched Mikan's feet out, the orthotist told us that Mikan had developed too much spacicity in his feet, and he was overpowering the braces. They weren't doing him any good at this point. He said Mikan would probably need a larger leg brace (some version of an AFO) that he wears all day in order to help him learn to walk. In a few weeks we go back so Mikan can walk on a carpet with sensors that record his gait with various types of braces on in an attempt to figure out which version will work best for him.

He also wants Mikan to see a developmental pediatrician and physiatrist at Riley. We tried to see a physiatrist a little closer to us earlier, but he needed a referral from a neurologist, which is why we jumped through hoops to get the extra MRI, sleep-deprived EEG, and bloodwork. Because the neurologist couldn't find anything that might label him with CP, she said Mikan had poor coordination and would just need "aggressive therapy." This wasn't good enough for the physiatrist, so we didn't pursue it. But the orthotist said that there is obviously something wrong if Mikan is almost three and making little progress with his walking. He said the physiatrist (basically a "walking specialist") at Riley would see him without a diagnosis and work with him to develop a plan to get him walking.

Right now we have no idea how long he would need the braces because we don't know what the problem is. He may just have to be our little Forrest Gump for awhile.

Hedge Apple Snowman

2010-11-11T12:25:00.002-05:00

Here are a few more pictures from our 3-day Lake Effect Extravaganza.

Mikan's eating continues to improve. He has been accepting grilled cheese sandwich bites, so I am planning on hiding some of the messy foods between pieces of bread to see if he'll take them (guacomole, refried beans, yogurt, vegetable purees?) We'll see how that goes. I do think he has more issues with texture than taste right now.

Unfortunately, his new AFOs and SMOs are creating sores on his feet. I have to take the braces in to be revised and hopefully the sores don't break open. If this happens, he won't be able to wear them for a long time until callouses develop.

Yes, we've put up our Christmas tree already. We're planning ahead for the baby, trying to get as much done as possible. John claims to be "theologically opposed" to putting up a tree before Advent, but he is making an exception this year.

First Snow

2010-11-05T14:35:00.003-04:00

Today we were suprised with a couple of inches of Lake Effect snow. Mikan loved it even though his walker kept collecting everything in the wheels, making it difficult for him to move around. He wailed when we had to go back inside.

Mikan's ENT appointment this week went well. She said his tonsils are medium-sized, but because he is showing no clinical signs of needing them removed, she wants to wait and see how they develop. She also said she would prefer to repeat the sleep study after his stoma revision so that she knows his airway is clear. This way we can determine if his disturbances were caused by his tonsils or if his capped trach was the main culprit. With a clear airway we hope to get more definitive answers.

Mikan also had good sound movement in both of his ears. He didn't have any fluid either, so the ENT said she didn't think tubes were necessary now. Since Mikan's vocalizations have been taking off, she said that is a good sign that his ears are staying clear. This is something we'll keep an eye on over the winter.

So, right now Mikan will only be having a stoma revision at the end of the month. She will remove any tissue that collapsed in his airway during the natural healing process, then stich up the tissue on the insides so he will have more room for air exchange. She will also use a flexible scope to make sure his airway is clean since she's discontinued his reflux med.

Mikan also was visited by a teacher from the School for the Blind in Indianapolis. She reviewed with us some vision services that he should receive in his preschool. Because he is making so much progress, this is an area that is easy to overlook. Mikan has trouble making eye contact due to a problem with visual processing in his brain, a result of his retinopathy of prematurity. With therapy and practice, this is expected to improve as he grows. Because he is only just now learning to be verbal, he hasn't quite coordinated all the components of being social. He relies on his signs and doesn't use eye contact. Right now we are looking for vision therapy that will help him with this and doing some research on our own.

Mikan and Grandma watching a Signing Time video.

Halloween 2010

2010-11-01T13:00:00.002-04:00

Believe it or not, this was the best Halloween picture I could get of Mikan before trick-or-treating. His look and posture say, "Why did my mom and dad have to make me wear the infant-size Superman costume?" Our answer was, "It was $1.50 at Goodwill."

It took Mikan awhile to realize that he was supposed to be collecting candy from strangers. He would get distracted with political signs in people's yards or basketball hoops before he ever reached a doorstep. When someone handed him some candy, he threw it right back in their bowls instead of putting it in his bag. Nevertheless, he brought home some good loot and had fun being outside.

Earlier in the day, John and Mikan collected some hedge apples from an osage orange tree at a park nearby. They kept entertained by rolling them around our yard afterwards.

Mikan's AFOs are giving him sores because he fights them so much. I'm hoping we won't have to switch to an AFO during the daytime (since they restrict a lot of his movement), but if we can't get them to work at night, this may be the next step.

Mikan has made some stellar improvements with eating. We use a piece of folded construction paper with several flaps. The outside of the flaps are numbered, and underneath each flap we draw a picture. When he takes a bite of something, he gets to see what is underneath the number. Because he is obsessed with numbers right now, this has effectively encouraged him to eat peanut butter sandwich and grilled cheese bites, the most meal-like food to date!

A Few Words

2010-10-27T13:40:00.001-04:00

After spending the last week on bed rest, I've finally been granted a reprieve. I am just trying to be extra careful (I've stopped working and taking longer walks), and not carry Mikan around so much. I never thought I'd be so excited to fold laundry or put away my cereal bowl.

Mikan finally received his new AFOs that actually fit him. He has been wearing them during naps with some success. We are going to try them at night soon. He hasn't been complaining too much about them, but they prevent him from tucking his legs underneath him when he sleeps on his belly, so I'm not sure if this will affect his sleep or not.

Mikan is finally starting to attempt some words. It's fun to see him vocalize and babble like other toddlers we know.

Make photo slide shows at www.OneTrueMedia.com

Fall News

2010-10-18T17:46:00.004-04:00

The earliest we could schedule Mikan's stoma revision was for the end of next month. That time period is a big question mark for us since it is dangerously close to baby #2's arrival (I'm 31 weeks now), but we'll manage. At the beginning of November, Mikan's ENT will decide whether or not to add ear tubes and tonsil and adnoid removal to his surgery list.

Over the past few weeks Mikan has been making some great progress with his speech and eating. He is more vocal, trying to imitate more of our words. He's also getting a little more adventurous with his foods. Over the weekend he stole some of Grandma's sweet potato fries off her plate, and tonight he took a few bites of a pancake. He licked the syrup off at first, but then actually ate it. Like chewed and swallowed it. He still only takes dry foods consistently, but hopefully this is a sign of good things to come. Perhaps he's just more excited now that Notre Dame is finally on a winning streak.

How Mikan Stays Buff: The Daily Routine

2010-10-11T18:35:00.001-04:00

Imagine "Eye of the Tiger" playing in the background.

He may not be able to walk yet, but watch out for his guns.

Make an on-line slide show at www.OneTrueMedia.com

AFO Delay

2010-10-04T12:07:00.002-04:00

When Mikan's PT saw the AFOs the orthotist sent us home with, she told us not to use them. She said that they gave him way too much of a stretch, and he probably wasn't sleeping well because he kept waking up in pain. We knew they were made incorrectly, but the orthotist made a small modification and told us to use them until the new ones came in. Apparently that small modification, meant to help Mikan, had been forcing his foot in a painfully unnatural position. We were glad his PT caught it, but obviously frustrated that the orthotist didn't. So we're still waiting... In the meantime, Mikan's walking is about the same. He's still very unstable without his walker.

Mikan has a new fascination with school. He saw a "Welcome to School" Signing Time video, and now cycles through all the signs while he's playing by himself. We are considering trialing a preschool when he turns three in March so perhaps this will help with the transition.

Last week we had Mikan's hearing tested because of the fluid he can't seem to get rid of. He is hearing in the "below normal" range, but that was expected because of the fluid. At the beginning of November we see his ENT, and ear tubes will most likely be scheduled at the same time as his stoma revision. His ST thinks the tubes will help his language development take off. We are still holding out that he may not need his tonsils and adnoids removed, but we'll see what the ENT advises.

How about them Irish? Mikan wore his Notre Dame sweat outfit without embarassment on Sunday for the first time in awhile.

Glasses, AFOs, and Horses

2010-09-26T18:57:00.001-04:00

Last week Mikan had an appointment with his eye doctor. We received some good news for now: Mikan's eyes are stable. This means they haven't worsened for the first time since he's had them checked (weekly in the NICU and bianually since we've been home). Although his prescription is hefty (-10 and -11), his glasses appear to correct this deficiency and hopefully his development isn't too hindered by it.

We also had an appointment to fit Mikan to his new AFOs that he will wear at night to help him stretch out his feet for walking. We waited an hour for an orthotist to add "something" to his braces. When the braces were finally brought into our waiting room, the orthotist fitting him noticed that the device that had been added was incorrect. It was designed for kids with the opposite problem of Mikan. Instead of making it impossible to point his toes, it makes it impossible for him to flatten his feet. The extra device was removed, but the brace itself has a hole in the back that weakens the function Mikan needs. We are using them while the new braces are being made. They have pictures of Elmo on them that we hoped would encourage Mikan to wear them.

I can't say Mikan has fallen in love with his new "Elmo shoes" yet. He allows us to put them on him, but after about 1-2 hours of sleep, he will wake up crying and clawing at them. He appears to have muscle cramps. They don't look comfortable to me, so I don't blame him for being upset. I'm not sure how we are going to make it through a night right now. We've been losing a lot of sleep just to "practice" with them for a few hours at a time. Mikan's oximeter probe doesn't read well while he wears them either, so the alarming machine is another disturbance at night. I think they are his first negative association with Elmo.

On a positive note, Mikan has really grown to love his therapeutic horseback riding lessons. His PT thinks they are helping with his core strength and standing/walking ability. It's pretty impressive to see how well he is doing considering how terrified he was of the horse a few months ago.

Make an on-line slideshow at www.OneTrueMedia.com

iPad Demo

2010-09-20T13:00:00.004-04:00

Mikan enjoys using the Voice4u app on the iPad. He's still in the experimental stage, but we are amazed at how he's already learned to manipulate the menus. He also knows that if he wants something that we don't understand, he can use his iPad to communicate it.

You may need to turn up your volume to hear all of the sounds.

Make an on-line slide show at www.OneTrueMedia.com

Neurology Results

2010-09-16T12:29:00.006-04:00

Well the verdict is in: Mikan has...nothing wrong with his brain that would prevent him from walking. His MRI was normal. His bloodwork was normal. The sleep-deprived EEG was normal. He only needs "agressive therapy." We are pleased with and grateful for this outcome. He will be fitted for his AFOs early next week, so we are hoping these will make a difference.

His neurologist did reccommend that he get his tonsils and adnoids removed. She said his sleep study revealed abnormal apnea for his age (7.1 disturbances per hour when the average for a child is 1.5 and an adult 5). We will talk to his ENT about this when we see her in November. Unfortunately, this means Mikan has a potential trifecta of surgeries looming: t&a, ear tubes, and stoma revision. I'm not sure if these can be performed at the same time or not.

Mikan went to Grandma and Grandpa's house this week to check out their pumpkin patch. He had to touch all of the pumpkins and sit on them to determine which one he would pick this weekend. He's got a system.

Cross Country Runner?

2010-09-12T13:59:00.003-04:00

Last weekend Mikan attended a football tailgate at the high school we work at. Some elementary and middle school kids who were also at the tailgate followed him while he ran around in his walker. The walker draws a lot of attention from most kids and toddlers we see. John and I overheard one of the kids say, "He's going to win all of his cross country races because people will feel bad if they pass him!" Oh kids.

On the subject of walking...Mikan goes to Ft. Wayne this week for a sleep-deprived EEG and follow-up visit with his neurologist to review all of his test results over the last few months and develop a plan for him. On the night before his EEG, we have to keep him awake til midnight. The next morning we wake him up at 4 and take him to the doctor to get hooked up to a labryinth of probes and try to rock him to sleep again in their office.

Baby number 2 is still right where he/she needs to be. I'm 26 weeks and being monitored weekly. If anything changes (I begin contracting, my cervix shortens, etc.), I will either go on bedrest at home or the hospital. Right now I am enjoying the freedom of not lying in bed all day. Ultrasounds suggest this baby is bigger than Mikan was already, so we're hoping this is a sign of good things to come.

"Get away from my walker!"

Labor Day without Labor...Bedrest Checklist

2010-09-06T20:17:00.005-04:00

Wednesday will be 25 weeks and 3 days. That is when Mikan's water broke. Dr.'s appointment tomorrow and hopefully no orders of bed rest. We really should get our stuff around to be ready for when that time comes. So here I am going to make a list of things we should have in place waiting for hospital bed rest to be ordered.

1.) Books for Jenna's Enterainment
2.) Snacks for Jenna's Nourishment
3.) A sub plan to buy me some time at school (make copies of a Dog Evolution Video Questionairre)
4.) List of Possible Babysitter's: Grandma G., R.S.,
5.) Stay on top of Laundry.
6.) ______________

Any other ideas of things we can do to be prepared?

Hopefully, preparedness is the real stitch that keeps the cervix competent.

Speaking, Beaching, and Eating

2010-08-30T08:40:00.004-04:00

Mikan is now using his voice augmentation app to communicate his needs. It's called Voice4u. We like it so far. He can choose from a list of items and touch the iPad screen to hear our voices say the name. You can also record video clips to go along with each item, and add whatever other pictures or audio you want to use. He already understands how to use it and will often ask for it to play with.

This week Mikan has an ENT appointment to follow-up on his sinus infection, discuss the possibility of ear tubes, and check the status of his stoma, which may need some surgical revision. If he needs both of these procedures, we'd have them done at the same time.

We still haven't heard when Mikan's AFOs will be ready to pick up, but we're anxious to get them because his walking is still pretty stagnant. His PT says that he sits and stands much better after his horseback riding sessions, but we've noticed that our day-to-day stretching and practices just don't seem to be getting him anywhere fast.

Some beach pics from Sat.

Just like last year at this time, Mikan enjoys licking apples, but refuses to consume any fruit. His biggest eating accomplishment last week was eating a whole brownie. He doesn't seem to have a problem with the chocolate flavored foods.

Ortho Update

2010-08-24T12:29:00.004-04:00

Last week Mikan saw an orthodic specialist and an orthopaedic surgeon. Mikan's feet and ankles are still too tight, preventing him from gaining strength for walking. After he is stretched out during the day it improves, but when he sleeps, he tightens back up. Mikan was casted for an AFO (Ankle-foot orthoses)that he will need to wear while he sleeps. The hope is that the AFO will keep him stretched out during the night, so when he uses his SMOs during the day he can walk easier from the moment he wakes up. I was hesitant to embrace the new equipment, but we want to do anything we can to help him walk. He maneuvers pretty well in his walker, but does very little independent standing or walking.

The surgeon said his pelvic x-rays looked normal and that Mikan appears to just have a muscle/coordination problem. We already knew this, but it was nice to rule out just one more abnormality. He said that there are sugeries to correct his muscle issues if he were to fight his braces in the future. Obviously this is something we'd like to avoid.

Mikan's eating is progressing. If he could live off dry cereal, goldfish, and milk we wouldn't need to keep the g-tube. Unfortunately, he refuses to drink water, and whenever we offer him fruit, he only licks it. Most of the time he prefers to lick it while it sits on the table, like in the video below.

At the end of the video, he is signing "Mikan" because he sees the camera and wants to watch a video of himself. He's pretty vain.

Make photo slide shows at www.OneTrueMedia.com

MRI Results

2010-08-16T11:51:00.004-04:00

Mikan's MRI results came back normal. We don't meet with the neurologist until mid-Spetember when he has a sleep-deprived EEG, but we were given the unofficial news over the phone today. I guess we'll discuss what it means in light of his severe PT delay at that time, but for now it is a relief. Nothing new to worry about.

He's had a runny nose for about a month now, and his congestion is worsening, most likely developing a cold on top of some allergies. We've been avoiding taking him to see a doctor because he is acting normal and isn't running a fever.

Below is a video of Mikan's "practice walking." It's more of a controlled fall towards furniture or people, but hopefully it is something to build on.

Make an on-line slide show at www.OneTrueMedia.com

Voice Augmentation

2010-08-09T18:37:00.004-04:00

Mikan has his MRI last week. We won't know the results until sometime later this week. He was able to get chlorol hydrate through his g-tube, so no pokes, which he appreciated.

This week a few of Mikan's cousins came to visit. We went to the beach on Saturday and then John took them rafting at the East Race on Sunday. Mikan and I took pictures from land, him not meeting the height requirement, and my pregnancy disqualifying me.

Mikan's eating continues to improve. He still prefers dry foods that he can pick up with his hands (cereal, goldfish, crackers, etc.), but at least he is swallowing them. He refuses to drink anything besides milk, acting like we've poisoned him if he accidentally sips water or juice in his cup.

His speech therapist thinks he needs a voice augmentation device so that he will be able to communicate better with people who don't know sign language. He doesn't have too many words, and his speech is likely to be delayed for awhile; however, because his receptive skills are caught up, she thinks an intervention is necessary. Specialized voice augmentation devices can cost upwards of $5,000 and although insurance sometimes pays partial amounts, it takes a long time for approval. After Mikan begins speaking, which he eventually will, this pricey item will become virtually useless. As a result, we are considering some apple applications that allow us to use cheaper resources and hopefully achieve the same results. We've searched for a few that allow us to upload pictures he can touch and the computer speaks for him. If anyone has experience with using voice augmentation apps and has some advice about which ones to go with or which to avoid, we'd appreciate any input. There is a lot to choose from.

(These are their "game faces")

Independence

2010-08-03T21:23:00.003-04:00

I have spent some time looking over past blog entries. I'll quote one now,"He'll be walking before he crawls."

I wish.

Mikan is starting to walk. At the library tonight, he took nine steps before crashing into the couch in the play area. These were marionette style baby steps. The first couple are quasi-controlled steps while the last five are a controlled fall. But, when given the option, we picks his walker. Watching Mikan in his walker can be a frightening experience for the untrained eye. As we visit neighbors on our street, their constantly reacting to his jerky walking shows how wobbly he can be. I know he won't fall, they don't.

By using his walker, he enjoys the outside independence boys need. He finds the puddles to make his mom react. He walks up to signs to shake them and see the tops move. He pulls on one part of the mums to see how they're connected. He tries to get into the nurses cars. He lays down on the concrete when he's all done. He walks three blocks towards the basketball court, just to get thristy when I forget the drink and we end up going back home. He never stays on the street sidewalks, constantly walking up to peoples' houses, especially if they have a basketball hoop.

Mikan knows the bedtime routine. I can't help but have watery eyes when he tries to delay bedtime by signing "Basketball, Please." A hoop in his room provides hours of entertainment that is pretty difficult for me to say no to.

A friend made a comment to me last week, "Man, it must have been a tough 2 years to this point." I was unsure of how to respond. And I still am.

It really has been a fast 2 years plus. Parts of it have been tough. ALL of it rewarding. But I'm glad God thinks we can handle so much.

Vote for Mikan!

2010-07-29T13:50:00.004-04:00

Voting for the cover kid for the March of Dimes benefit calendar that will feature Mr. Mikan begins August 1. Each vote is a dollar donation to the March of Dimes. The link below should take you to the web page where you can view all of the kids' pictures.

http://www.katie-whitcomb.com/portraits/site/#/march-of-dimes-calendar/
If you would like to see all of the pictures from the photo shoot, follow this link.

http://guidedlightphotography.nextproof.com/galleries/mikan-gensic

Other updates:

Mikan had an echocardiogram last week. We haven't received official results, but unofficially, everything looked "normal."

Next week Mikan will have an MRI to test for any brain abnormalities that may be affecting his walking. He may have mild CP, although nothing has been officially diagnosed yet. He is also seeing an orthopedic doctor at the end of next month.

We have noticed Mikan attempting to walk from one piece of furniture to another more often. This is new, so we're hoping it is a sign of progress to come.

Thanks for everyone's prayers during my surgery. I just saw the doctor today, and he said that everything looked great for now. I am almost 20 weeks. Let's keep that baby cooking.

Post Surgery

2010-07-23T11:34:00.003-04:00

Surgery went as expected. The effectiveness of the surgery is based on how long the pregnancy lasts. So we'll pray. However, the doctor who did the surgery greeted me in the waiting room with a green fishing line that he told me to save for the baby book (I knocked on wood in my head for him).

Jenna got a spinal instead of a general anesthesia to prevent any meds getting to the baby. I did not pinch her legs without her feeling it.

Jenna's Birthday

2010-07-19T21:34:00.003-04:00

Today, Jenna turned 27. I'm pretty sure she won't forget this one.
Ultrasound #1 at about 10:30 am. Baby #2 appears to be heading in the right direction.

T.M.I. Alert:

Ultrasound #2 at about 10:45 am. Jenna's anatomy isn't the proper size to hold a baby to term. What (the cervix) is supposed to be 4 cm long is only about 1 cm long. Therefore, a Wednesday outpatient surgery to help 1 cm be long enough to prevent a preterm baby (cervical stitching). Happy Birthday.

The procedure will happen during week 18 and 4 days. If we were to have a third child this surgery would take place around week 12. The doctor is mildly optimistic that it is not too late for this surgery to be successful. We'll know more Wednesday after the surgery.

This suggests an explanation to Mikan's water breaking early. Jenna never had an Ultrasound #2 during the first pregnancy, so we didn't know if what was supposed to be 4 cm long was actually 4 cm long.

So, no love making. Just baby keeping inning.

On the way home from Birthday Dinner, there was a rainbow. To me this was a reminder of God's promise loosely quoted "He doesn't give you more than you can handle, when you handle it with Him."

Neurology Update..More Tests...More Doctors

2010-07-18T13:51:00.005-04:00

When we described Mikan's problems to the neurologist, she seemed convinced that he had a form of Cerebral Palsy that had gone undiagnosed thus far. But after her physical examination, she seemed less sure of her hypothesis. She said that he most likely has a mild form of CP, but he wasn't showing several characteristic signs. For example, he doesn't cross or scissor-kick his legs. And when he uses his walker, he puts more weight on his legs than his arms. When she examined his legs and walking, she said it seemed that he had a coordination problem, not a muscle or spine problem. Just based on her examination, she said that if he has a form of CP, it is probably mild enough that we wouldn't change treatment. He may need PT for a long time, and he may have coordination problems for a long time, if not his whole life (although we're not willing to accept that yet given what he's overcome so far), but she didn't think medical intervention was necessary.

However...

Just to be sure...

She ordered an IV-sedation MRI, a sleep-deprived EEG, and a load of blood tests.

The blood tests were to rule out rare possible causes for his poor coordination. For example, she said that low thyroid can be a cause that is often overlooked in preemies, because people associate all of their delays with prematurity. The MRI and EEG will have to be done in Ft. Wayne. Those are scheduled for August and September.

Even though Mikan had an MRI at 3 months, the neurologist said that it wouldn't necessarily show everything at that time; therefore, a repeat MRI is needed to check for CP or other possible causes of his delays.

She also wants him to see an ortho doctor to check his hips and make sure that nothing is out of alignment there that would be throwing off his balance.

In the meantime, we continue to give him opportunities to practice his walking. He likes taking his walker to the basketball courts near our house and walking from one hoop to the other, signing "basketball," then moving on to the next one. I don't think he'll let his poor coordination get in the way of being the next Michael Jordan, or George Mikan.

Mr. March

2010-07-15T09:25:00.004-04:00

Mikan will see his neurologist soon and we hope to get some answers about his walking, even if it is just "We can't find anything, and we need to just let him do it in his own time."

His eating cotintues to slowly improve. He eats several different types of cereals and chocolate and peanut butter chips consistently.

Mikan was chosen to be in a calendar to benefit the March of Dimes. There will be an online vote for the child to be on the front cover. Each vote costs a dollar and is a donation to the March of Dimes. I will post the link when the site is ready. The picture below will appear on the calendar.

Eating and Beaching

2010-07-08T12:42:00.006-04:00

After eating chocolate pudding...

Mikan's nutritionist and speech therapist worked together to create a new eating plan for Mikan. Now he gets whole milk and chocolate instant breakfast to eat orally, and whatever amount he doesn't take is g-tubed as pediasure. We were able to eliminate one of his feedings and spread them out so he gets hungrier. So far this is working great, and this week he added goldfish to his short list of foods he will actually swallow.

Mikan sees a neurologist next week for evaluation of his walking. If necessary, he will be referred to a physiatrist for further treatment.

Since Lake Michigan is a short 25 minute drive, we have been spending our weekends there. Mikan loves playing in the sand and water. His swim shirt perfectly covers his trach site in case any water would splash near there. The outside has a track that still won't close, so it may need to be stiched in a few months.

Also, please pray for one of my college friends who just gave birth at nearly 29 weeks. Her baby Olivia is doing well (just weaned off CPAP), but I'm sure they would appreciate any extra prayers.

More Doctors

2010-07-02T11:01:00.005-04:00

Mikan's horseback riding has been going better than expected. He throws an initial tantrum when the instructor takes him and puts him on the horse, but he gets over it quickly. This week he got to ride backwards in the saddle. The hope is that the rhythm of the riding will help him develop core body strength that will aid his walking.

Because Mikan's walking progress has been slower than expected, his therapy coordinator suggested we see a pediatric neurologist for some testing who may then refer us to a physiatrist if he is diagnosed with something. We have this appointment scheduled already. Hopefully this is just a precaution and nothing will come up. The best news would be that he doesn't have any neurological issues preventing him from walking and that he will do it "in his own time." But if something is detected, we'd want the earliest possible interventions. We've also been encouraged to find a developmental pediatrian for Mikan. Just as we are beginning to see our regular specialists less, another few are thrown onto the team.

His ENT noticed that although the inside of his trach stoma is closed, he still has a little hole on the outside that isn't. In a few months, this may have to be surgically repaired since he is still at an increased risk for infections.

Mikan's pulmonologist ordered another arterial blood gas which Mikan was thrilled about. We haven't heard the results, but I'm confident he's doing fine. He will also have an oximeter study done (examining the readings from his heart and oxygen monitor) to make sure he is breathing comfortably.

Mikan's biggests achievements to date are eating tiny bites of cereal and saying five words: Daddy, doggie, ice cream, Angie (one of his nurses), and apple. I've been told not to expect "Mom" to make it into his vocabulary for awhile.

He's a Mover

2010-06-25T12:56:00.002-04:00

Mikan is making some progress using his walker. He doesn't have perfect control, but he enjoys using it. Below is a video of Mikan in the hallway of his pulmonologist's office.

His pulmonologist ordered another set of blood gases, a swallow study, and an echocardiogram while we were there. He said that Mikan sounded good, but we needed to watch out for signs of asthma. Right now he isn't on any asthma medication because he hasn't shown too many symptoms. He never wheezes, but he does take breaks during play sometimes. I hate to medicate him before he needs it, but his pulmonologist wanted us to make sure that we weren't dampering his desire to play by allowing him to tire out when he may not otherwise on medication. We are going to take the "wait and see" approach for now.

This week Mikan had his first therapeutic horseback riding lesson. He screamed for the first few minutes, but by the end of the first lap, he was enjoying it. He's already signed several times to "ride the horse" again. He will take weekly lessons with an instructor and his physical therapist for the remainder of the summer.

Mikan's speech therapist said that he should be eating the foods that he likes daily, no matter what they are. Since he only eats chocolate chips and soft serve ice cream right now, we'll be making several trips to the ice cream shop this summer.

Make an on-line slideshow at www.OneTrueMedia.com

So Far So Good: Our Week in Review

2010-06-18T16:35:00.005-04:00

Mikan has been doing well without his trach. We spent this past week in Ft. Wayne visiting with family while John worked at a basketball camp. Mid-week we had to take Mikan to the ER for a high fever that wouldn't go away, but he seems to be doing fine now. Mikan enjoyed a trip to the zoo and the YMCA's outdoor waterpark. He has a really nice tan line where his trach ties used to be.

Mikan also went to South Haven Beach last weekend. He played in the sand for the first time and loved it. We cleaned sand out of his crevices for several days afterwards, just like it should be.

Our Little Decannulation Sensation

2010-06-09T14:17:00.004-04:00

When the doors of the PICU opened yesterday and we walked through, both John and I were immediately hit with the smell of hand sanitizer, fresh plastic and cheap soap, or at least that's all I could distinguish specifically in what most people refer to as "the hosptial smell." John expressed his dislike for the place, and I was immediately thrown back to two years ago when living at the hospital was our life for six months.

When Mikan only used CPAP for the first few days of his life, we were hopeful for a speedy recovery. When he needed the ventilator, we hoped it would only be for a few days. After a few days, we hoped it would only be for a few weeks. After a few weeks, we hoped it would only be for a few months. A tracheostomy was considered a "worse-case scenario" for Mikan's respiratory needs from birth to three months. When he didn't make any progress off the ventilator (a mean CPAP baby on pressures of 10 and nearly 100% oxygen for a couple weeks), he was trached. Even then he was expected to wean off the ventilator and oxygen after his surgery, possibly only going home with a little flow through the trach. Although initially horrified at the news of our son getting a hole cut in his neck, we grew to accept the idea, knowing that less support was better, and if a trach caused him to need less respiratory support, especially a ventilator, we would embrace it.

But Mikan didn't wean off his oxygen or ventilator during his hospital stay with the trach, so we prepared for discharge with a boatload of equipment. Somewhere along the lines we learned that God had ultimate control, so we focused on giving Mikan the best care possible, know matter how complicated or inconvenient it may be.

As many other ventilator/trach parents know, this care included constant suctioning throughout the day and night, troubleshooting alarming machinery before Mikan turned blue from not getting his vent pressures, carting around every emergency item possible and performing rescue CPR at the bedside or even roadside, and forgoing social events because Mikan was too fragile to travel or be exposed to large groups of people, among many other sacrifices I won't bother to list.

Mikan was ventilated till he was 15 months old, and although we had an airway scare during a surgery that led us to believe he would need a major airway reconstruction, this is obviously no longer considered to be a problem.

Although we never would have wished this for our son, I can honestly say I don't regret experiencing it. I've grown more confident as a parent as a result. I've learned to trust God no matter how desperate the circumstances. Most importantly, I've learned to be grateful for what I have and not wish for something I can't control. When Mikan was in the hospital and having a hard time weaning off the ventilator, I remember expressing my frustration to my dad. He told me, "Mikan is perfect in God's eyes, just the way he is." I think that helped me begin to accept Mikan's path, no matter how slow it was. I've been around a hospital long enough to know that there are plenty of kids who don't get their trachs out, or don't survive long enough to receive that intervention, so we are everyday thankful for Mikan's progress.

Yesterday afternoon Mikan was decannulated. He acted like nothing happened afterwards. He resumed his normal activites in the hospital, slept well overnight (except when the nurse tried to get a rectal temperature at midnight- Rectal? Is that really necessary?), and we were able to be discharged this afternoon. Mikan is now napping in his bed, satting 98 percent, with a heartrate of 88. We couldn't be more proud of him.

The Circus

2010-06-07T17:46:00.003-04:00

Dad and Mikan doing the "elephant" sign

We got a few tickets to the circus through March of Dimes. Mikan was more interested in the flags flying above the acts than any of the animals or performers. One of the acrobats fell during an act and was taken away in an ambulance, so we hope he was ok...

Mikan is doing well with his walker; I'll post a video soon. He likes to run though and got caught on a threshold leading out to a friend's garage. He landed face first on the cement, never letting go of his walker. He's got some nice tough guy bruises and scrapes all over his face.

Mikan's decannulation is approaching. Please send Mikan a quick prayer when you think of it. We are looking at a one day one night hosptial stay minimum.

Summer Fun

2010-05-31T07:22:00.003-04:00

Mikan attended a slip 'n' slide party at his cousins' house this weekend. He loved it. He also went on his first boat ride at Great-Grandma and Grandpa's lake house.

We signed Mikan up for therapeutic horseback riding this summer. Since you are required to wear a helmet to ride the horse, we've been practicing wearing a helmet at home. He doesn't even like baseball hats, so this began as quite a task. But since he likes watching videos of himself on our laptop, we started using that as an incentive to keep the helmet on. We discovered he also has an affinity for Taylor Swift.

Mikan has an appointment to discuss his orthodics tomorrow. We also may be ordering him a walker at this time. Although he is still behind in PT, Mikan's OT is recommending discharge! He is graduating from one of his therapies! Way to go bud.