Monday, May 31, 2010

Summer Fun

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.

Wednesday, May 26, 2010

The Big 'D'

Mikan's ENT gave us the go ahead to schedule Mikan's DECANNULATION! She said that the sleep report showed Mikan had about 7 "disturbances" per hour. She said for someone without a trach, five disturbances or under is considered normal, so she wasn't concerned about his 7. The report also showed that he dropped his oxygen to 89 sometimes, for a period of 20 seconds. I assured her that he sleeps with an oximeter at home and that this has never happened unless he was severely sick and needed oxygen. It was an uncomfortable night for all of us. She also looked at Mikan's tonsils and said they were medium-sized, but nothing she thought that needed to be taken care of before we experimented with taking the trach out. So the ENT and pulmonologist are comparing schedules for a PICU stay for Mikan (maybe within the next few weeks!). It will at least be one day and one night, possibly longer.

We are obviously excited about the possiblity of life without trach care, valves, and suctioning. I'm trying not to be too anxious since we don't know how Mikan will react, but I can't help but be excited for water this summer (that's maybe more than a few inches deep), or letting him play in the sand, or possibly putting him in a full-sized bath tub. All those little things that trach parents appreciate so much more if their kiddo is fortunate enough to get rid of the tube. We're hopeful for Mikan. Thanks for praying for us.

Friday, May 21, 2010

Diarrhea, Ice Cream, and Puddles

Mikan has had diarrhea for the past week. We aren't really sure what is causing it since his diet hasn't changed. Perhaps he has a stomach bug? He isn't acting any differently. We've been giving him extra fluids and a probiotic in the meantime. I've just been trying to avoid being the only one around when he needs changing. Pregnancy nausea and toddler diarrhea aren't a good mix.

We have an appointment with Mikan's ENT on Monday to discuss the results of Mikan's sleep study. We're hoping that she will tell us he doesn't need his tonsils and adnoids removed and that the results are good enough for decannulation.

Last weekend Nina treated Mikan to some ice cream. It was nice enough that he could enjoy it outside.

Today it rained here, and Mikan kept signing "water" and pointing to a big puddle on the sidewalk outside of our house. I was trying to keep him away from it, but John said that Mikan was a "boy" and needed to play in puddles. I relented, Mikan loved it, and John carried him inside afterward.

Saturday, May 15, 2010

Mikan the Cartographer... and Jenna's Pregnant

Mikan and I had a talk about him being an older brother. During the meeting, he confessed to being a little embarrassed about not walking or eating all of his calories yet. Therefore, he resolved to at least be ahead of his younger sibling in geographical knowledge. The following video shows him working on that skill...

Other news: The sleep study folks think that Mikan may need his tonsils and adenoids removed. We highly doubt this and we are waiting to discuss this with his ENT.

Thursday, May 13, 2010

A Happy Farewell

Last week we said goodbye to the following equipment (forever hopefully): 2 LTV950 ventilators, a Fisher hot pot, a 30lb battery, and numerous connector wires, and back-up chargers.

We still don't have the results from Mikan's sleep study, so nothing is scheduled yet. We were told it should only take three days, but it has been ten.

Mikan still isn't walking. He got another strap added to his SMOs to force his heel down because he tends to walk on his toes. We may have to make additional modifications or switch to AFOs for real progress to be made. I think he is gaining stability, but he still has many bad habits.

However, Mikan's map skills are improving. He points to the wall and signs "please" because he wants us to quiz him. He has been teaching his nurses a little about geography.

Friday, May 7, 2010

Sleep Study

Another picture from the March of Dimes walk.

Mikan's sleep study was a big pain. Mikan screamed the entire time the technicians glued all the probes to his chest and head, producing so much sweat it was hard to get them to stick. But even before anyone touched him, he cried hysterically as soon as he saw the room. It was as if he could sense something was going to be different tonight, and someone would be forcing him to do something he didn't want to. When we finally rocked him to sleep, he rolled around enough during the night to force a technician to come into our room with a flashlight to replace the nasal canula or probes that he had twisted off every couple hours. Every time the technician messed with him, Mikan woke up, and John had to pat him back to sleep. He woke up for good at 5:30. Needless to say it wasn't the best sleep, but hopefully they have enough good data to study. We won't have the results till next week. If they look good, then we can finally schedule his trach removal.

Over the past several weeks, I've been working on a mural in our living room to help Mikan learn his geography. Right now he can identify South America, North America, Greenland, Iceland, and Lake Michigan with some level of consistency. He asks us to pick him up so he can point to each place while we name the continents.

Mikan loves being outside. He even insists on going out when it rains.

We're also making some progress on eating. He usually drinks enough Pediasure that we don't have to g-tube him 3 out of the 5 feedings every day. He still doesn't really take any solids, but he at least holds crackers and small pieces of bread in his mouth longer than before, and he loves licking peanut butter off his fingers!

Below is a video of Mikan with his favorite blanket right after it came out of the dryer.