One Week

Love his little face!

We're only a week away from Nolan's surgery. There is so much to plan for, since we'll be away from home for two weeks. I wrote Nolan's teacher a note today to explain his absence, and information on the type of surgery he is having performed (the Nissen Fundoplication). I found a simple explanation online - I love finding documents in "plain English." I'm pulling him out of school starting Thursday, which gives him six full days before his surgery - this should keep him from getting a nasty virus immediately before surgery.

We're also cramming in his therapy sessions this week (4 speech therapy sessions in as many days) and wrapping things up on all the other fronts - he is done with tennis for the year, and probably won't have speech or visits with his TOD until the end of March, at the earliest (in reality, he'll probably be home until after Spring Break, just to let him heal completely).

Dennis's mom is coming out to take care of Matt during the two week time-frame that we'll be in the hospital up in Rochester. I need to go to the school tomorrow and add her to the emergency list, and I have a list written for Matt's wonky rotating "specials" days at school (show and tell and library are on rotating days).

I'm trying to figure out what Nolan will need for the hospital stay. From talking to other parents who have been there/done that (BTDT), bringing a blanket or two from home is a good idea. The BTDT mothers also recommended bringing 2 piece pajamas that button down the front so he isn't stuck in a hospital gown the entire time.

I'm also bringing the DVD player, the tablet computer, and other things that will help distract the little guy. I sincerely hope we'll only be in the hospital for 5 days (the short end of the time span) rather than 10 days (the longer end of the time span).

Fall Down Go Boom

Nolan's competitive spirit will stand him in good stead...someday. It is not always a wonderful thing when he competes with his brother by racing on the snow-slicked sidewalk in front of our local mall. He face-planted, and actually slid on his head for about a foot. I really thought the damage was going to be worse than it was, but fortunately he escaped with no bloody scrapes. He does have a decent goose-egg. And broken glasses.

In other news, we have a crazy-busy weekend filled with Nolan's last tennis class, Matt's piano lesson, and a hockey tournament that includes a game tomorrow at 7:00am. At least we don't have to travel for the hockey tournament!

Sleep Neurologist Follow Up

Feeling puny, but lollipops are always good.

Nolan hasn't been feeling so wonderful lately - not really "sick," but running a low grade temperature and he has had a headache all day today. Thank goodness for children's tylenol!

He had a routine sleep neurologist appointment in Fredonia, so we made the little jaunt to the doctor's office, paid our $40 copay, and were told to continue C-Pap therapy and we'll see them again in six months.

The sleep neurologist also told us that we must take his C-Pap machine to the hospital with us to ensure there are no problems with the machine and the fundoplication (since the swallowed air might become trapped and create issues). This is one of the big reasons Nolan is having a Mic-Key button placed at the time of surgery - any trapped air can be vented if it becomes a problem.

Nolan did get weighed (34 pounds) and measured (41 inches) before we left. His next appointment will be in late August, just after his fifth birthday.

I was glad to hit the road and head toward home, particularly since a nice little snowstorm cropped up on Route 60.

Relieved to be home and out of the snow.

With the funky weather and the viruses running rampant through the schools, I may keep Nolan home for the second half of next week, just to keep him from getting ill before surgery.

Thank goodness Spring is only a month away!

Random Catch Up

We've had a nice, quiet week. Well, nice and quiet except for Valentine's Day, which has somehow morphed into Second Halloween. Cards and an insane amount of candy came home with each boy this week - we had the "Candy Fairy" come and steal some to reduce the overall stash.

I love going into the boys' school. Their teachers are awesome. Our school is awesome. Did I mention that they get art, music, library, and gym on a regular basis? Also, there is a swimming pool in the elementary school. When I was a student in Southern California, our schools were lucky to have books, much less a swimming pool.

Nolan's teachers made an igloo out of milk jugs as part of their learning unit - the kids can go inside of the igloo and read books. It is a pretty impressive structure - Nolan can actually stand up inside of it! His teacher also just sent home a CD of all the songs they've been singing in the class this year. Did I mention how awesome she is?

Otherwise, we're just in the "waiting period" before the big surgery - which has a low level of stress associated with an exercise known as "Keep Nolan Healthy." We don't want to have to reschedule surgery, since we have no family in the area. With family flying in to help take care of Matt during the scheduled surgery time, we really need to keep everything on track. Avoiding colds is paramount, particularly since a Nolan Cold takes approximately 2 months to get rid of.

Here's to a healthy 2 1/2 weeks ahead!

Organization

We've had a few nights when we are woken up by a rather loud THUD emanating from Nolan's bedroom. His C-Pap was stored on top of a makeshift end table, and occasionally Nolan's active sleeping style would cause it to crash to the floor. Obviously this wasn't the most desirable situation, and we needed a quick fix to prevent the C-pap machine from meeting certain doom on the bedroom floor.

The old set-up: unorganized.

In addition, the number of "accessories" that go with Nolan have increased over the past year. We used to just have the hearing aid case and a Dry and Store (hearing aid dryer). Now we have the C-Pap machine and various masks (we're supposed to rotate to prevent facial deformity), otoscope (for monitoring ear infections), and we will be adding some equipment and supplies for g-tube care.

Things were spread out all over the house. His glasses and hearing aids were downstairs on top of a bookcase, the C-Pap was in his room, and the new equipment coming in March would have to go somewhere, too. I was delighted to find a set of stacking cubes for only $10 the other day - and the cubes have holes (which means that electrical cords can be threaded through the back).

Deep sigh of organized contentment.

The cubes work perfectly, and I will make (or find) a small net to stretch across the C-Pap machine cube to keep it securely in place. It is less likely to slide inside of the cube, though, which is a relief. I have kept the Dry and Store downstairs on top of the bookshelf until I can pick up a power strip to handle the extra cords. In the meantime, though, I have the C-Pap case, masks, machine, hearing aid case, and other things (syringes/otoscope/glasses case) nicely organized in the cubes.

Now, if only I could get the playroom organized!

Report Card Time

The kids in our universal Pre-K program get report cards every semester. We just received Nolan's first report card, and the little guy is doing very well academically.

He knows all of his shapes, all of his colors, and can count accurately up to 16.

He knows 24 out of 26 upper case letters (he missed P and U). He called "P" a "B" and couldn't recall the U.

He knows 22 out of 26 lower case letters (he missed d, l, q, and u). He named the d and the q as b and p, which makes sense since those letters are rather confusing, anyway. He called the lower case l an I, which also makes sense (a capital I and a lower case l look very similar)!

He knows his days of the week and most of the months of the year, in song format. He doesn't know his phone number or address, so we need to work with him on that. And he can't tie shoes, but neither can Matthew. That's my bad - I need to ditch the velcro!

For his fine motor development, he is "improving" on his pencil grip - he can hold the pencil the proper way at first, but doesn't have the strength to maintain a proper grip and reverts to a fist-hold for most writing activities. He can draw a circle and a square, but not a triangle. He cannot snap a snap, but he can button - again, a problem with muscle strength in his hands. The button takes coordination and not strength, so he can do it. The snap takes physical force to snap closed, so Nolan can't do it. Not the end of the world, but something we're keeping an eye on as it may hinder his ability to write in kindergarten. It also hinders his ability to snap his own pants after using the bathroom - something that might be embarrassing as he gets older.

Scooter-riding skills should be on report cards.

His "weakest" area is gross motor, something that didn't really used to be a problem. It isn't so much that he's regressed, but that his peers are surging ahead and he's not. He can't skip, though that is a hard skill and  I am sure a few kids in the class can't skip. He has difficulty throwing a ball and catching a beanbag. Last year, he could hop on one leg for a short period of time. He can't do that anymore, at all. I don't think it is a balance issue, as he is "proficient" at standing on one leg - he just doesn't have the strength to hop on it. He's completely lost that ability - not sure what to make of it, but we're keeping an eye on his motor skills, too. I think it is a muscle weakness issue more than anything else. He can run and kick a ball, which is good! His teacher noted that they will work on a lot of hopping during play time - we need to strengthen those muscles.

My favorite portion of the report card was the "listening and language development" section. I love looking at his "grades" in the mainstream classroom. His grades were:

Speaks in whole sentences: Proficient
Participates in circle time: Proficient
Attentive for stories: Proficient (thank you, FM system)
Follows multi-step directions: Improving
Expresses thoughts freely: Skill needs work
Rhymes words: Improving
Produces opposites: Proficient
Uses appropriate voice level: Improving (too quiet)

He is proficient in nearly all of the social skill areas, which makes my heart sing. His pre-math skills are solid - he can sort objects by size, color, and shape. He is improving on extending a simple pattern.

Basically, he is rocking mainstream Pre-K. We need to work on some muscle strengthening exercises, but the academics are easy for him!

Hilarity

Oh my goodness, this kid is going to kill me with laughter. He insisted on wearing goggles to bed last night.

He's awake in that photo, just staring at me. He said, "That is good." Then he waved me out of the room.

Whatever he lacks in physical health, he sure gained in personality!