Tuesday, December 28, 2010

Christmas 2010

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).

Friday, December 17, 2010

Home Sweet Home

"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!

Wednesday, December 15, 2010

Mikan has a Sister!

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.

Sunday, December 5, 2010

He Can Read!

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.

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.

Saturday, November 27, 2010

Thanksgiving Week 2010: Stoma Revision

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.

Thursday, November 18, 2010

Forrest Gump

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.

Thursday, November 11, 2010

Hedge Apple Snowman

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.

Friday, November 5, 2010

First Snow

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.

Monday, November 1, 2010

Halloween 2010

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!

Wednesday, October 27, 2010

A Few Words

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.

Monday, October 18, 2010

Fall News

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.

Monday, October 11, 2010

How Mikan Stays Buff: The Daily Routine

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

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

Monday, October 4, 2010

AFO Delay

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.

Sunday, September 26, 2010

Glasses, AFOs, and Horses

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.

Monday, September 20, 2010

iPad Demo

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.

Thursday, September 16, 2010

Neurology Results

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.

Sunday, September 12, 2010

Cross Country Runner?

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!"

Monday, September 6, 2010

Labor Day without Labor...Bedrest Checklist

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.

Monday, August 30, 2010

Speaking, Beaching, and Eating

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.

Tuesday, August 24, 2010

Ortho Update

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.

Monday, August 16, 2010

MRI Results

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.

Monday, August 9, 2010

Voice Augmentation

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")

Tuesday, August 3, 2010


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.

Thursday, July 29, 2010

Vote for Mikan!

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.

If you would like to see all of the pictures from the photo shoot, follow this link.


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.

Friday, July 23, 2010

Post Surgery

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.

Monday, July 19, 2010

Jenna's Birthday

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."

Sunday, July 18, 2010

Neurology Update..More Tests...More Doctors

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.


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.

Thursday, July 15, 2010

Mr. March

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.

Thursday, July 8, 2010

Eating and Beaching

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.

Friday, July 2, 2010

More Doctors

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.

Friday, June 25, 2010

He's a Mover

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.

Friday, June 18, 2010

So Far So Good: Our Week in Review

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.