Wednesday, April 27, 2011

Singing and Studying

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.

Monday, April 25, 2011

Easter 2011

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

Thursday, April 21, 2011

Chicks

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.

Monday, April 18, 2011

March for Babies 2011




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.

Monday, April 11, 2011

Glimpses of Progress



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.

Friday, April 8, 2011

Spring Break-Physiatry Appointment





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."

Sunday, April 3, 2011

Straps


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