Back to the Routine

At the Jamestown Children's Museum

I am very glad that our weekly routine has been restored. Both boys wanted to get back to preschool, and Nolan was desperate to see Mrs. B., his preschool teacher, again.

Of course, as soon as we reached the bottom of the staircase at the preschool, he balked.

"I'm too tired."

He often claims this, after walking for a little way, and we have to carry him for a while. Fortunately, his speech therapist met us at the door and helped motivate him to walk a little farther.

He went into his lock-kneed stance at the door of the classroom, and froze in place. Our most wonderful and beloved Speech Language Pathologist (SLP) came to the rescue again, marching behind him to see if he would copy her march. He didn't, really, but he was sort of pushed into the classroom and she began to engage him with an activity. I could slip away, letting him re-acquaint himself with the classroom routine.

Have I ever mentioned how grateful I am that we decided to pursue push-in services? Honestly, our SLP is truly a superwoman- helping him on the social front as well as with speech/language issues.

Hopefully he'll re-adjust to school very quickly, and pick up where he left off with the socialization situation. With Superwoman the SLP, I have a feeling it won't take him long!

Recovered

At first, I thought the supraglottoplasty/lingual tonsillectomy was going to be easier than the regular tonsillectomy/adenoidectomy surgery. Nolan wasn't as swollen, and the pain wasn't quite as acute in the early days.

What I didn't count on was the pain increasing on day 8 and then lingering for A Very Long Time. I think we finally managed to ditch the Tylenol with Codeine on Day 15. Even now, almost three weeks from the surgery date, Nolan occasionally will hold saliva in his mouth and complain, "My throat hurts!"

Those moments are rare, though, and he is generally recovered. He was supposed to take his antibiotic until Tuesday, but extreme stomach pain and diarrhea made us discontinue it a few days early. His doctor is out of the office over the holiday, so I'll have to let them know about the problems with the antibiotic on Monday. I really hate stopping antibiotics early, but bleeding diaper rash and severe diarrhea are enough to make me stop giving him the medication.

We've been busy over Christmas break- playing in the snow, visiting a new Children's Museum in our city, and generally enjoying the slower pace of life. My Kindle (Christmas present) arrived just before New Years Day, and I have been sucked into reading the many free e-books available online (as well as a few purchased books).

Tomorrow, we get back to the rat race that is therapy, preschool, and ice hockey. Though Nolan is quite happy to get back to School on Tuesday, I am sad that our little break is over!

Forbidden Fruit

Dearest Nolan,

I know that chocolate is very, very tempting. This is why it was hidden in the highest cupboard in the kitchen. While I admire your persistence and agility, I would really prefer to keep that reflux under control. And, really, did you need to eat the entire bag? Please, my dear boy, stay away from the Hershey's!

Love,

Your Mommy.

Mr. Cranky

Christmas was a great deal of fun, though Mr. Cranky is having a hard time coping with the festivities. He's still having some pain and difficulty swallowing his saliva at times. He spent much of Christmas in a bit of a funk.

On the other hand, he was breathing silently last night, and slept until 9:30am today. He has developed a hoarse voice, so it is possible he is developing another upper respiratory infection. He won't take his medication voluntarily, and we've had more than one incident of Nexium and/or antibiotic being spat out on the carpet. I've weaned the Tylenol with Codeine down to about 1 dose per day, and he seems to be handling that fairly well- I think the crankiness is due to a general "icky" feeling rather than acute pain.

We are keeping things quiet and staying at home, letting him recover his energy and hopefully get past this bout of crankiness. Hopefully he will be 100% recovered before returning to school on January 4.

I, for one, will be very grateful when 2011 arrives!

Christmas Eve

Nolan seems to be improving a bit on the pain front, which is very good news. He is still on the Tylenol with Codeine, but only takes it twice per day. We can tell when he needs a dose, because he stops swallowing and the drool starts pouring out of his mouth. He also cries and lets us know in a very loud voice, "MY THROAT HURTS!" Those communication skills we have worked on for three long years are coming in very handy lately.

We had friends over tonight, and he played outside in the snow for a while before fatigue set in (Nolan is not a fan of the great outdoors in general and wants to be carried- not fun in knee-deep snow).

The boys resisted bedtime, but Matt finally gave up the fight when he realized Santa would not come until all small children were fast asleep. Nolan, however, continues to fight the sleep fight. Playing Santa with an insomniac three year old in the house takes incredible ninja skills.

Somehow Mommy Santa managed to get the presents under the tree without Nolan noticing from his bedroom upstairs. His being hard of hearing works to my advantage sometimes- I'll take the benefits where I can get them.

I really can't wait to see the boys' expressions tomorrow morning. Three and Five are full of magic- and this year is truly magical!

Merry Christmas!

(To my friends who celebrated Hanukkah this year, I hope you had a joyous time as well).

Dear Codeine, I Love You

Nolan talking to, but not eating, a snowman cupcake

The ENT really wanted Nolan to discontinue the Tylenol with Codeine. I stopped the medication yesterday, and Nolan was rather cranky.

This morning, he woke up crying. Then screaming, whining, and general mayhem ensued. He wouldn't eat breakfast, he wouldn't eat lunch. He also wouldn't drink anything, or even swallow his own saliva. By noon, his mouth was held open and drool was pouring out.

I put him back on the Tylenol with Codeine. Regular Tylenol isn't cutting it, and the child is in so much pain he can't swallow. Within an hour of the medication, he was eating, chatting, and smiling again.

I'm going to give the medication another few days before trying to wean him off the pain medication again- the poor little guy needs a break!

Post-Op Appointment

Nolan had his post-op appointment for the supraglottoplasty today. He has discontinued the oral steroid and the pain medication, and will continue the antibiotic and his reflux medications. The weaning from the pain medication has left him rather cranky, but he seems to be fine most of the time.

I wasn't expecting the impromptu nasal endoscopy (a scope to verify his recovery is going well). This required more cotton with lidocaine up the nose, the papoose board, and a flexible scope going up his nose and down his throat. With the number of times the little guy has been held down for similar procedures, he's going to develop a complex about things going up his nose!

The endoscopy showed lots of scabs where the laser burned tissue. This is expected, but it made me sad to see all the burn marks. The poor little guy has to be in so much pain when he swallows! The scope also showed that the laryngomalacia is completely gone- his epiglottis is no longer flopping on top of his voice box when he tries to breathe.

His ENT gave him the all-clear to resume all activities, and wanted to see him back in another 3-4 weeks for a repeat nasal endoscopy. The office staff made his next appointment for March 28, however, so I have a feeling I might have misheard the doctor. He also has a follow-up sleep study scheduled for May, and we will verify that the obstructive sleep apnea has disappeared.

The important thing is to keep on top of his acid reflux (the extra-esophageal or LPR reflux, specifically), so the laryngomalacia and other airway difficulties do not recur. For now, the Zantac and Nexium are working to prevent further damage- I suspect there will be more pH probes in the little guy's future.

We did give Dr. B a little present- to thank her for figuring out much of Nolan's medical craziness. We painted a pot with Nolan's handprints and I wrote, "Thank you for helping me grow" on the rim. It seems a silly gift, but how do you thank someone for saving your kid from future heart failure? I suppose a plant will have to do- words can't express how grateful we truly are.

Our "thank you" present.

Despite being given the all-clear to resume all activities, I am keeping Nolan home from preschool tomorrow.* For one thing, it seems a bit absurd to send him to school for one day before Christmas vacation begins. In addition, I don't want to expose him to unnecessary germs while he's still recovering (he has already developed yet another upper respiratory infection, without exposure to preschool).

The last reason is that the Week of Craziness has officially begun. Today, we made the plant gift for the ENT, ran up to Buffalo and Back, Matt went to hockey, and I made a bazillion snowmen cupcakes.

An army of sugary goodness.

Tomorrow morning, Matt has his birthday celebration at his pre-K class. We will probably scarf down some lunch in the stairwell, then run over to his "X-Cel" and Creative Arts class Christmas program- then I will make a horde of Christmas cookies for his Pre-K cookie exchange. Wednesday involves his Pre-K Christmas party and cookie exchange. By Thursday, we are going to be happy to have a break from the programs/activities/parties.

I hope everyone has a Merry Christmas (or had a Happy Hanukkah or other celebration)!

*Our school district doesn't go on winter break until December 23, so we have a busy week ahead!