Monday, October 31, 2011

Happy Halloween!

The kids had a great time watching their pumpkins get scooped out last night. Nolan wouldn't touch the pumpkin guts for love nor money.

Both kids had Halloween parties at school today. Nolan is Batman and Matt is Jango Fett (from Star Wars, if you aren't up on your intergalactic characters).

 Batman with some friends.

Jango Fett on Parade.

We'll see how Trick-or-Treating goes tonight. Nolan's gut appears to be heading toward shut-down territory. He wouldn't eat lunch and he had an explosive "event" at his afternoon X-Cel preschool class, which involved a quasi-bath in the school sink and a LOT of Clorox wipes. It wasn't pretty folks.

He seems fine otherwise - oftentimes his gut rebels and he just gets right back to playing. We'll go on our candy quest later this evening and hopefully his intestinal tract will behave.

Friday, October 28, 2011

Please Be a Cold, Please Be a Cold...

Nolan has been missing the /s/ sound for a while (we haven't gotten a detection of /s/ in the Ling sounds in about 2 months), but the past couple of days have brought a lot of sound confusions and "WHAT YOU SAY?"

Here was today's Ling sound check (hearing aid microphone only, no FM system, at a distance of six feet):

He does slightly better with his FM system (he only confuses /ooo/ for /mmm/ and omits /sss/ with the FM system on - it eliminates distance as an issue, since my mouth is within 8" of the microphone). Still, the loss of /sh/ and the confusion of the other sounds is fairly new. I hope we get them back!

Wednesday, October 26, 2011

What a Week!

Nolan is doing great. His energy levels remain high (sometimes a little too high) and his reflux has been fairly manageable the past week or so. His school bus brings home a very happy boy, who simply loves all of the activities his teacher comes up with. Last week was "fire week" and they did the letter "F" and fire safety drills. He also made the really cute dalmatian hat in the picture. This week is pumpkin week - they have been determining if pumpkins will float (they will), carving pumpkins, and learning about the life cycle of pumpkins.

I, on the other hand, have been having a really... "interesting" week.

On Monday, just before Nolan's school bus arrived, I let the dog inside. I went upstairs to clean up the kitchen, then walked downstairs. Something squished. And then something crunched. Looking down, I saw what could only be described as The Massacre of The Squirrels. Somehow Casey had smuggled his prey inside, and it was now all over the living room.

To prevent the trauma of a young preschool aged boy, I had to dispose of said squirrel parts quickly. We had no paper towels (and paper towels were not up to this job), so I ran for the shovel. And carpet cleaner. Fortunately, I managed to fling the bulk of the squirrel into the woods before Nolan's bus arrived. Unfortunately, I have bad aim and the squirrel ended up hanging from a tree. When Nolan came home, I fed him lunch upstairs and rushed him off to his X-Cel class, to prevent him from seeing squirrel-parts-in-a-tree and squirrel-remnants-on-the-carpet.

I was extremely thankful that he was safely ensconced in preschool as I worked to clean up the heavily stained carpet. It was horrid. After shampooing the carpet twice, I figured I would hit the main level of our house. Might as well, since I already had the equipment out.

As I shampooed the upper level, I realized the dirty water container was full. I unlatched it from the machine, and carried it to the kitchen. That's when the lid fell off, causing the contents of the bucket to spill all over the tile, carpet, and walls. There's nothing like squirrel water splattered all over the house to make the day a little brighter! Since it was time to pick up Nolan, I simply threw bath towels over the whole mess and ran to the preschool.

Once home, I picked up Matt from his bus and then picked up Dennis from work (we were down to one car). Dinner was at Friendly's that night, because Squirrel Water = dinner out. It's a simple equation.

Tuesday morning brought a flood of activity to the house - literally. We woke up to a very flooded basement - about a foot of water was standing in the room. The water line to our ice maker had become detached in the night, and the water pump continually pumped the water onto the tile floor (which dripped right down into the basement). Those things can produce an amazing amount of water. The majority of Tuesday was spent with a shop vac and a sump pump. On the plus side, this water did not contain any traces of squirrel.

The rest was spent in the Walmart vision center - we took Nolan's bent frames in to get them straightened out, but the lab tech broke them when he tried to straighten them. Nolan walked out of the store with a brand new pair of glasses, after we convinced them that they really needed to be replaced immediately since he has amblyopia and we don't want to risk the vision in his right eye.

Wednesday has been sedate so far. No squirrel massacres, no flooded house, and all vision/hearing equipment is intact.

The week can only get better!

Friday, October 21, 2011

Loving School

Nolan has been doing wonderfully this week. Other than an incident at 4:00am when the C-Pap machine went crashing to the floor (inspiring a brief panic over a possibly-broken machine), the week has been entirely uneventful and Nolan has been full of energy.

He adores school. Absolutely adores it. Every morning, he takes off running for the school bus with a smile on his face, and he comes home every day with stories of his adventures. Here's a sampling:

"I played in sand today. I didn't play with C---- because he wasn't there. I don't like L------ because she hits me. She goes in time out. I like Loghan because she is nice to me. We like to play."

"We paint today. We make a fire truck."

"There is a book in my backpack. Everybody make it. B---- likes pink apples. I like green apples."

I absolutely love these days. Matt is enjoying school, too. I did have a bit of a panic attack/mama bear moment when this came home in his backpack:

The bright red "Not Acceptable!" caused deep concern. There was no explanation for the bad mark, and since Matt is only five years old and can't read "long" words like acceptable, the note had to be meant for the parents. I wasn't sure if Matt's coloring in the circled objects was the issue, since the written directions simply say to circle the like objects. I felt it was a little harsh to criticize a five year old child for some extra doodling.

Then I wrote to the teacher and got the rest of the story.

Apparently, the verbal instructions were to circle the similar objects and then color the pictures with their best work. Matt decided to take the slacker route and scribbled quickly to get the assignment over with.

The teacher had discussed "not doing his best work" and they both decided the work was "not acceptable" prior to writing it on the paper. Matt has been doing his "best work" ever since, so this was a good lesson for him. I do wish I had had the explanation before the mama bear claws came out, though!

We are dealing with a bit of a conundrum with Matt. He's very "able" in the academic realm. By "able," I mean he came to me the other day and said, "Mom,  3 + 3 + 4 is TEN!" His next sentence was, "I think 9 plus 10 is nineteen - is that right?" His emotional and maturity level is at the kindergarten stage, but he needs more academic stimulation. Fortunately, his teacher is willing to provide it. He was able to do the "circle the like objects" thing at the age of two, so these worksheets are more "busy work" for him than anything else. He really needs first grade level math worksheets, so we're working on getting him more appropriate work.

Matt absolutely loves his class, and particularly loves gym. I had forgotten about games like Steal the Bacon. It is so fun to hear him talk about these things. I wish I could have foreseen this talkative, bright boy when he was so speech delayed at the age of three. It would have relieved a lot of worry!

Monday, October 17, 2011

Back to "Normal"

Nolan's most recent bout of reflux seems to have disappeared. Over the weekend, we had two great C-Pap nights, and Nolan managed to keep his mask on until 6:00am (Saturday) and 8:15am (Sunday). Last night he didn't make it past midnight, but that's how it rolls with C-Pap therapy and tiny children. We take the good nights when we can get them!

Sadly, we didn't make it to Zoo Boo, because it was raining, 45 degrees, and the wind was gusting at 50mph. We'll try again this weekend: the temperatures are supposed to be lower, but it won't be raining.

The weather did cooperate for Nolan's field trip today. His "X-Cel" (private preschool) class took a trip to the Jamestown Audubon Society. The kids found maple, oak, and apple leaves. They also found chestnuts and made rubbings of tree bark and leaves. It was a wonderful afternoon (and I was thankful for the 100th time for his trusty FM system)!

Here's to a happy week ahead!

Friday, October 14, 2011

Hanging in There

Nolan is doing surprisingly well, considering the small amount of food he's taken in over the past few days. His appetite has dropped, but he is still doing pretty well at school. He did tell his teacher that his tummy wasn't working, and he has developed a wet cough. I think we have a combination of reflux-flare up and cold.

In any case, the C-Pap has been put on hiatus yet again. Nolan keeps ripping it off, and we're a little more cautious with it during a reflux flare up. If he vomited into the full-face mask, it could be disastrous. He had pulled it off 4 times by 10:00pm last night, so we let him sleep without it, for fear that his stomach would rebel in the middle of the night.

He did eat half a waffle this morning, so hopefully we're seeing the other side of this episode. This hasn't been anywhere near the awfulness of the August situation, thank goodness. He has some energy and is still eating a little - the returning appetite is a good sign.

I'm still waiting for insurance approval for the CT scan of his sinuses. I haven't called the ENT to question the status of this one, because I'm really unsure of what we will do with the information. Is it worth putting him through surgery to fix the sinus issues when the reflux will simply wreak havoc again?

In any case, I'm hoping to see the return of a healthy appetite and more energy for the little guy. We have Zoo Boo this weekend (trick-or-treating at a local zoo) and we might want to find a few more letterboxes if the weather cooperates.

Monday, October 10, 2011

It's Baa--aaack!

Nolan started showing decreased energy on Saturday. No big deal, but we kept an eye on it. Sure enough, the gagging and the coughing followed.

Then the reflux laryngitis appeared, making the little guy sound as if he smokes three packs per day.

I thought (and hoped) that the nasal C-Pap mask contributed to the last reflux flare-up in August. I was wrong.

It's back, and it is back in full force.

You can hear it in his voice. The hoarseness is caused by acid damage to his voice box.

He spent much of today crying and in bouts of pain. His entire gastrointestinal system is rebelling. He kept holding his hands in front of his mouth, and he told me repeatedly that his stomach wasn't working.

I hate this. I hate what it does to him.

Hopefully this will be a short flare-up. He is still eating well, so that is a big plus. Right now, it is just the pain, cough, gagging, and hoarseness that seem to be causing problems. With the laryngomalacia, he is wheezing and has loud stridor at the moment, too.

The pain isn't constant, which is good. He'll be going along just fine, and then an attack will hit him and immobilize him. We went letterboxing today (a pastime which involves a very short walk to find a hand-carved stamp - this one was hidden by a local train station), and he did fine for part of it. Then the coughing and gagging started, so we headed home.

I can only hope that this flare-up is brief, and that he'll be back to himself very soon.

We see the ENT again in November, and we need to ask her what the long-term damage to his vocal cords is going to be. He has worked really hard to listen and speak, and it frustrates me that the reflux is taking away his sweet little voice.

Sunday, October 2, 2011

Holy Growth, Batman!

Nolan's usage of the C-Pap is increasing - his "short" nights with the machine end at about 2:00am (he wakes up irritable). His "long" nights last until 7:00am (or later) - which means he is sometimes getting 11 hours of clear breathing.

The results are incredible. We have never seen Nolan with so much energy and life. The fatigue issues have disappeared, and he has energy through the entire day.

Sometimes he has TOO much energy

He also has rosy cheeks, and a happier attitude. He doesn't cry all. day. long. He giggles, plays tag, and can actually walk through the store without having to be carried.

At this rate, he is going to grow like never before. His little body is finally able to produce the right amount of growth hormone, and he is getting the proper amount of REM sleep (and oxygen) at night. I can't state how much I love this.

He does have a chronically runny nose and some chest congestion, but the trade off in energy is well worth it. Grow, Nolan, Grow!

As a side note, we did get his microarray results about a week ago. I was waiting for the official written report in the mail, because over the phone they told us that it was "normal, but with copy number variations (duplications) of unknown clinical significance." The report came in the mail, and it simply says, "normal." So essentially, his chromosomes look fine and aren't the cause of his problems - though this doesn't rule out a point mutation or other genetic issue below the chromosomal level. And those duplications may prove to be "problematic" in the future (i.e. they may find another child with the same physical issues and the same duplications, which would give the duplications clinical significance).

Since Nolan is healthy at the moment, we don't care about the "cause" of the problems as much - we feel like we have found our solution to his apnea and fatigue in the C-Pap therapy. Hopefully nothing new will pop up - and if it does, we'll just take it as it comes.

In the meantime, we are celebrating and loving life with our energetic little boy!