Monday, February 27, 2012

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).

Saturday, February 25, 2012

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!

Tuesday, February 21, 2012

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!

Thursday, February 16, 2012

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!

Friday, February 10, 2012


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!

Wednesday, February 8, 2012

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!

Tuesday, February 7, 2012


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!

Monday, February 6, 2012

Tubie Friends

I participate in a forum designed for parents of children with complex medical issues (parent2parent), which has been a lifesaver for my sanity. They have forums for children with ridiculously severe reflux, forums for kids with respiratory issues, forums for kids who have many issues but no comprehensive diagnosis, and forums for tube-fed kiddos (among others).

When I mentioned that we were moving forward with the fundoplication, I received an email from one of the fabulous moms, who offered Nolan a Tubie Friend. Tubie Friends is a wonderful group of "surgeons" who place feeding tubes into Build-a-Bears (and other stuffed toys), then ship them to a child who will be getting a feeding tube. The toys are free, and the parent requesting the Tubie Friend pays the shipping cost.

I was still bewildered by the news of the pathology report and our solid decision to proceed with the surgery, and her email of support and kindness was very needed at that point in time.

As a mommy, I am at a complete loss for how to talk about the surgery with Nolan. It is too soon for him to know that he is going to have surgery, since it is an entire month away. At some point, however, we'll have to discuss it with him. We can't have him waking up and discovering a plastic valve jutting out of his stomach without a prior explanation.

How in the world do you explain a g-tube to a four year old?

Nolan's Tubie Friend has made our job as parents much, much easier. Nolan still knows nothing about his upcoming operation, and we don't plan on telling him until we are only a few days away from the actual event.

His Tubie Friend arrived in the mail on Saturday, and we gave the toy to him on Sunday morning.

Nolan was delighted, and asked what the "plastic thing" was in the puppy's tummy. "It's a button. The puppy has reflux and a sick tummy, and the button lets him get medicine in his tummy or his mouth."

Nolan immediately connected the extension set to the Tubie Friend and gave the puppy "Nexium."

He played with the button for quite some time, until he was satisfied with how it worked.

He also gave his Puppy Nexium in the more traditional way. He played for quite some time with the syringes (already a big part of Nolan's life with his daily meds) and with the main valve on the MicKey button. Tubie Friends outfits the toy with the exact type of g-tube or j-tube (or g-j tube) the child will be receiving, so Nolan's has the MicKey g-tube.

Nolan named his puppy February.

When we get closer to the actual surgery (probably a few days out), we'll start talking to Nolan about the fact that he will have a surgery to fix his tummy. When he wakes up, he'll have a button like February the Puppy.

Because of the Tubie Friend, the idea of a "button" will be less strange and less scary. We can demonstrate things like tube flushes and balloon fills on the puppy before it is done to Nolan.

The Tubie Friend has helped this scared Mom and Dad, too. We're able to see what it looks like before it is placed in our son. We can see that it isn't all that big, and it is simple to operate.

To all the surgeons at Tubie Friends, we love you, and thank you from the bottom of our hearts.

You have made a really difficult time in our lives a lot easier.

Struggling, And Trying to Avoid Platitudes.

Last week was a little rough. I'm not the type to break down in hysterical tears when things aren't looking up, but I was (and still am) struggling to process and deal with the upcoming surgery and terror-inducing biopsy of Nolan's esophagus. Last week, I didn't even want to get out of bed.

Not an option, of course, with two small boys and a rambunctious dog, and I am grateful that life surges on and forces me to keep moving. That feeling of extreme exhaustion was replaced by obsessive googling (my go-to coping mechanism, and yes, I'm aware that it isn't exactly healthy). Now I'm just a little stressed, a little sad, and able to keep things in (better) perspective.

In general, I don't write about my feelings or the profound sadness and stress (and anxiety/worry/panic) that accompany any new diagnosis or revival of an old one. It's too personal, and I honestly cannot stand the platitudes that people (who do not have sick kids) throw around in these situations.

God doesn't give you more than you can handle.
He doesn't look that sick.
I couldn't do what you do.
It could be worse.

These things add stress to an already stressful situation. The "it could be worse" statement is probably the cruelest thing anyone can say to a parent struggling with a sick child. It makes light of the current situation - a situation that is difficult, painful, and stressful. Of course it could be worse. It could always be worse. But that doesn't make the situation we're going through now easy. That statement makes the claim that what my child is going through is nothing. Not a Big Deal. And I hate it.

These statements implicate that you must accept every situation with, "WOW, what a great day! Everything is beautiful and it is such a wonderful thing that my child has XYZ! What a blessing!" Trust me, not everything is a beautiful, sunshiny gift - some things are tough as nails. We're getting through it, but we're terrified, stressed, and uneasy about the decisions and surgeries that are ahead of us.

The g-tube is the most stressful thing, I think, because it is a visible reminder that something is Not Right. Everything else is pretty much invisible (well, when he's not wearing his hearing aids or covered in a C-Pap mask), but the "button" on his tummy really bothers me for some reason. At first it was going to stay in for a period of three months, but after talking to the GI team, it will likely stay in for as long as Nolan needs help breathing at night. His stridor is still quite loud, so I doubt that the C-Pap is going anywhere soon. Which means the "button" will be sticking around for a while, too. And that makes me sad.

I am SO grateful for other parents who have "been there, done that" and assure me that the button is a Big Scary Thing when you first make the decision, but that it ends up being no big deal. The kids can swim with it, play with it, and no one even knows it is there. One group of parents is particularly amazing and has helped us immensely, but I'm saving that for another post. Tough times create beautiful people, and there are some really outstanding people out in the world.

A gift from some wonderful people - 
helping moms and kids to cope with tubes, one friend at a time.

Sunday, February 5, 2012

Records and Registrations

Nolan's registration paperwork came in the mail on Friday, so I filled out the insurance information, signed on the dotted line, and sent the form back to Golisano Children's. We also received our insurance approval for an inpatient stay on Friday, so that was quite the relief. No fighting on that front, at least!

 I feel rather unsettled about Nolan's pathology report from two years ago. That is one of the only medical records I don't have in my possession, and I never worried about it at the time because he had reflux, and that was what the pathology report would have been looking for (evidence of reflux inflammation in the esophagus). I sent in a request to Nolan's former GI doctor on Saturday, requesting a copy of that pathology report. I want to be able to understand the "cellular changes" and what they mean, so I can ask the GI team in Rochester better questions.

 Nolan's ear looks pretty clear, though I've kept his hearing aid out in his right ear. I'll try putting his aid in again tomorrow morning, and hope for the best. He's really tired today and fell asleep on our way home from Erie, PA - Matt's been a little sick so hopefully Nolan won't come down with it!

Thursday, February 2, 2012

Getting Better

Nolan is a few days into his oral antibiotic/Ciprodex ear drops, and his ear has stopped leaking. I'm keeping his right hearing aid out until we're done with the antibiotics, so he's still a bit compromised with regard to hearing. It is amazing how much losing all hearing in one ear does, even when the other ear is aided. He really struggles and often asks for us to repeat things.

Last night, I read a story to the boys, and Nolan sat to my left. He shook his head after a few minutes, then climbed over me so he could sit to my right. It took me a minute to figure out what was going on, but then I realized his "deaf" ear was closest to me when he sits on my left. At least he's figuring out how to accommodate for it!

Our weather has turned "warm" again, hanging out between 32-45 degrees, depending on the day. That's 0-7C, for the rest of the world. Very, very warm for Western NY in the winter. Since Matt was kept home from school for a couple of days, he enjoyed riding his bike and playing outside. Unfortunately, the snow has disappeared, so the sledding has come to an early end.

Matt's mystery rash has also started to disappear, and he isn't itchy anymore. I sent him off to school this morning, and he was more than happy to go. Hanging around the house all day isn't much fun for him, especially when his brother is gone and Mommy is stingy with the cartoons!