Monday, June 27, 2011

Strawberry Season 2011



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.

Tuesday, June 21, 2011

Father's Day Weekend 2011




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.

Thursday, June 16, 2011

Sleep Study and Shriner's



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.

Wednesday, June 15, 2011

The 'F' Word

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.

Thursday, June 9, 2011

Seeing Summer

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?

Saturday, June 4, 2011

First-Ever Family Camping Trip

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.


Thursday, June 2, 2011

Sleep Study and Goats



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.