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!