A Much Better Day

Nolan, playing at the playground on a rather fine day

Someone must have said a prayer on our behalf yesterday, because Nolan slept through the night last night. This event is so rare, it is blog-worthy. We are all much, much happier after a full night of rest! Nolan has not been crying all day long today: much of his persistent crying behavior is due to lack of sleep.

When I decided to quit my job to stay at home with the kids, I underestimated the "burn-out" factor. Staying at home full time after working in an intellectually stimulating career has been wonderful, for the most part. Unfortunately, there is no break when you are Mom. Add in an insomniac toddler, a winter full of medical problems, and a spate of bad weather... and the weariness factor increases tenfold. There is a high probability that I am losing my ability to communicate with adults.

Truth be told, we need a vacation. I'm not going to get a "real" vacation this year (while Dennis and Matt are camping in the Sequoias with family, Nolan and I will be at John Tracy). Still, some attempt at a vacation must be planned, because I am becoming a rather stressed-out mother. And stressed out mommies are no good to anyone.

So we're going to Pittsburgh. It might not be the Bahamas, but it is close enough to do over a long weekend, and it has plenty to do for small children. I managed to secure a decent three-star hotel in Greentree, PA for $59 per night on hotwire.com. It has an indoor-outdoor pool, is in the outskirts of Pittsburgh, and it has free parking.

We're going to visit the Children's Museum, the Carnegie Science Center, and the Pittsburgh Zoo and PPG Aquarium over Memorial Day weekend. No doctor appointments, no therapy, no rushing to preschool/swimming lessons/ice skating lessons/MOPS/library story hour/speech therapy. Just a nice, long weekend of swimming, playing, and visiting a few new places.

I truly cannot wait for this little trip!

Very Cranky

We have had a week of cranky. I had truly hoped that Nolan would begin having restful nights after the tonsillectomy and adenoidectomy. Unfortunately, our little insomniac has not found his path to slumber, and we have had many wakeful nights. He does not nap, even if we take a long ride in the car. Nighttime usually results in several trips to Mom and Dad's bed, until we eventually are so exhausted we just give up and let him thrash around sleep in our bed.

I'm not sure if the wakings are caused by his apnea or if his reflux is flaring up. He still doesn't have his two-year-old molars (he is a very late teether), so teething is also a possibility.

This mama is worn out by the sleepless nights. Not to mention that he cries all day long. The constant crying pushes me to the edge, and by the end of the day I end up in an exasperated fog. Whatever the cause, I truly hope the boy sleeps soon.

The next sleep study in August seems very, very far away.

TB Test: Accomplished

Nolan's TB test is completed. Dennis and I are heading in for our tests on Friday! The only items left on our John Tracy Summer Session checklist are the audiology reports and the recent language testing reports.

Updated Language Scores and TB Test Scheduled

I received Nolan's language scores today. He is holding steady with his expressive and receptive language scores, with results nearly identical to his former scores (by percentile rank-there was a very slight/insignificant decrease in scores). He is currently 2 years, 8 months old and his expressive language score is at 2 years, 11 months. His receptive language is at 3 years, 6 months, so his receptive language is definitely his strong suit!

His articulation scores, however, have taken a bit of a dive. He has lost sounds that he used to have, so I was afraid this might be a "problem area." With his pesky conductive hearing issues and amplification that hasn't been adjusted since last June, his hearing level and amplification level aren't exactly well matched.

Nolan used to test with a very mild articulation delay (bordering on normal), and now has a moderate articulation delay.

The upshot of the regression in skills is that we shouldn't have any problem qualifying for an IEP and maintaining our speech therapy services. Though his language scores are well ahead of his chronological age, he is barely maintaining his expressive/receptive language score percentiles. His articulation scores have decreased, likely a product of chronic hearing fluctuation in conjunction with his permanent hearing loss. Hopefully the articulation scores will improve once the conductive component either disappears or we can adjust his hearing aids to suit his loss (he is currently aided for a 30dB loss in the high frequencies, even though his hearing level is 60dB with the conductive component). We have a hearing test on May 20 to get a better idea on the status of his current hearing levels.

I also scheduled Nolan's TB test for the John Tracy Clinic Summer Session today. We'll have the test performed tomorrow afternoon and read on Thursday afternoon. I have a call into our "grown-up" doctor to have the same test performed on Dennis and me. I hope to have the health forms completed and mailed into John Tracy by the first week of May.

Speech Sample: 32 Months

The little guy is progressing at an amazing rate with speech and language- he is starting to form longer sentences and tell narratives. We made playdough today, so he created several objects and told me what they were! Too bad the video is backlit- we were playing in the breakfast nook. You can hear Matt humming in the background, too.



Youtube no longer allows third-party transcription (i.e. Overstream), so I am unable to caption the video. Nolan is discussing his "Christmas Tree" out of playdough, and he states he is going to see Mickey Mouse in July, and then states that he is three years old rather than two years old (he wants to be three to visit W-Kids at Wegmans). I had to correct him on that one!

T&A: Day 9 Post-Op

Nolan's tonsillectomy recovery seems to be complete, and we are all grateful! He slept at night with no pain medication, only waking once to come into our bed. There was some fussing, but he fell asleep in a few minutes. He did wake up fussy, so I gave him some Tylenol with Codeine this morning.

He's been doing great today, and it appears we are past the worst. For Nolan, days 3, 6, and 7 were the worst, particularly at night. Last night's restful slumber indicates he is on the mend, and he has been playing rather nicely today.

I am so glad to bring this little chapter to a close!

T&A: Day 8 Post-Op

Last night was bad. Really, really bad. Nolan woke up at 12:38am, which was brilliant because he was allowed to have more codeine at 12:30am. We gave him his medicine, but he was quite unhappy so I took him downstairs to settle on the couch and watch some TV until the medication kicked in. We both fell asleep on the couch and Nolan woke again at 3:00am, absolutely hysterical.

He screamed for about an hour, and nothing would help. He told me his throat hurt, that his tongue hurt, and that he wanted his cup. It was too early for more medication, so I tried to soothe him on the sofa with his sippy cup and beloved "black bear." He simply couldn't settle, alternately yelling for "Dad" or his cup. He would also reach for me, grab me in a hug, and wail, "Want wuv!" I gave him all the "wuv" I could, but he wanted down and went upstairs. Dennis picked him up and he kept wailing "Dad!" We finally realized he wanted "bed." He felt awful, but he wanted to lie in his own bed with his sippy cup and his bear. We tucked him in, and he fell asleep, exhausted from his 2 hour long scream-fest.

He had ice cream for breakfast, and by 9:00am, you would never know what a terrible night this kid had been through. His days are much, much better than his nights. He is playing well, not as whiny, and I really think we have turned the corner. Perhaps this will be the end of the pain- I certainly hope so.

Maybe we'll all get some sleep tonight.

Vote For These Awesome Kids

A group of pretty wonderful kids got together and produced a video for the American Speech Hearing Language Association last year, won first place, and are now competing in the "battle of the bands" at dosomething.org.



Go and vote for them here.

T&A: Day 7 Post-Op

Nolan is soldiering through his recovery. He woke at 4:00am in agony, and cried for another few hours until more Tylenol with Codeine kicked in. He's doing "OK" today- alternating between crying and being just fine- when the Tylenol with Codeine wears off, he is less than happy.

We did manage to take a library trip today and went with some friends to the playground to get some sunshine. Nolan cried a lot at the playground, but it seems to have done him some good because he is happy and quiet now.

His ear isn't draining as badly, so the Ciprodex is doing its job on the ear infection front. In a few more days, we should be beyond the tonsillectomy pain and ear infection, and I will be thrilled to have our happy little boy back!

T&A Post-Op: Day 6

Nolan, doing fairly well on the tonsillectomy front

Nolan's left ear is still draining. I placed a call to our ENT this morning to see if this is a normal reaction to the surgeries, or if we have a problem in that ear.

The doctor called back, and we definitely have a problem. The "normal" drainage would have been seen on days 1-3 post-op, and we should not have drainage developing after we completed the Floxin drops. In other words, Nolan has an ear infection, only six days after receiving his tubes. Beautiful.

Besides the generalized "ick" factor of having a ton of discharge from the ear, there is also the danger that his tube will clog and he will perforate around the tube. We had this happen to his right ear in December 2008, and the results were not pretty. To prevent this from happening again, he will be placed on Ciprodex ear drops for 14 days. Nolan is just thrilled, let me tell you. He just loves ear drops. For the next two weeks, we get to put a squirming toddler in a headlock and dispense the eardrops. If the infection clears up, we get to wait until our six-week checkup before seeing the ENT again. If it doesn't, then we have to get back to the office ASAP.

As a side note, cleaning out his hearing aid is a rather nasty business with all the drainage. Thank goodness for a lot of soapy water, his wire cleaners, and my strong stomach.

On the tonsillectomy front, things are going fairly well. This morning he was in a bit more pain than on the previous two days. We were warned that there would be some bad breath following the surgery, but hadn't noticed it- until today. Boy howdy, that breath could slay people. He is also starting to shed some scabs. I won't tell you how I know this, because of the general "ew" factor. I will say, however, that I wish Nolan would keep some things to himself. Blech.

He's still not big on fluids, but will nibble on graham crackers, waffles, and wheat thins. To get some fluids into him, we might be having popsicles for dinner tonight!

T&A: Day 5 Post-Op

Keeping track of medications

Last night I was a bit concerned because Nolan's temp went up to 99.9 and he was feeling rather iffy. His left ear was still draining discharge, and we ran out of the antibiotic Floxin drops last night. He also woke up several times during the night, and even fell down the stairs at 2:30am. I thought today might be a tad rough.

Day Five is going very, very well. He is still "warm" at around 99-100 degrees, and the left ear is draining, but he is happy and seems to be in little or no pain. The fever is normal, according to the post-op instructions, as long as it doesn't go past 102 degrees Fahrenheit. The ear drainage is a tad concerning, but we will call the ENT on Monday to see if we should get more Floxin ear drops to help clear it up.

In the meantime, we're just watching to make sure his fever doesn't climb and we're still trying to keep his fluid levels up. I had no idea a kid would prefer waffles to juice post-tonsillectomy!

T&A: Day 4

Nolan's "prize" from his Aunt and Uncle

Day Four is dawning a much better day: Nolan is eating again, and even ate a whole waffle at breakfast time. We're still having difficulty with the fluids, but he's eating Jello and Popsicles, so that should cover the fluid requirements.

He is actually playing this morning and acting silly again, which is a relief. I am concerned about some drainage from his left ear: the Floxin ear drops won't even go down the ear canal. I certainly hope he isn't getting an infection in that ear so soon after surgery. He hates the ear drops more than any other medication, so getting an infection would be a real bummer (we'd have to increase the number of drops).

Here's to a much happier day- hopefully this means we've turned the corner with recovery!

T&A: Day Three

A rare moment of calm on Day Three.

Day Three is not going as well as the first couple of days. Lots of crying, screaming, and generalized unhappiness seem to characterize today. Nolan's also refusing popsicles, which are the only fluids he's been getting (he won't drink anything at all, even though he'll clutch his cup for comfort).

Let's hope that codeine kicks in so the little guy can take in some fluids...

Tonsillectomy/Adenoidectomy and PE Tube Surgery

Nolan was surprisingly cooperative and in a good mood on Tuesday morning as we headed up to Buffalo Children's. He allowed the nurse to take his vitals, we discussed the runny nose issue (his lungs were clear, so we were allowed to proceed), and we headed down to the surgical waiting room. Things were on-time, so the little guy only had to wait for 2 hours and 15 minutes once we arrived at the hospital, and Nolan was entertained by Mickey Mouse cartoons on the waiting room television.

Our ENT came in and took our little guy from us, and we waited for about an hour until the pager went off to let us know he was out of surgery. Everything went very well, and Nolan was taken directly to the PICU (Pediatric Intensive Care Unit) for monitoring. He was awake and screaming when we arrived, both in pain and confused from the anesthesia.

Because he has severe central apnea, the anesthesiologist only gave him half the dose of Morphine most children receive. He also received no pain medication after the surgery, to ensure that his breathing was stable. Our ENT prescribed Tylenol with Codeine for pain relief, but the Codeine has been cut in half to reduce any potential complications with respiration.

He was quite upset for the first two hours in the PICU, crying and becoming hysterical. He looked like a Very Sad Boy, with bloody ears (from the PE tube placement- this can be shocking the first time you go through the procedure, but sometimes the ears are a tad "messy") and a swollen neck. Luckily, the Tylenol with Codeine took over and he fell asleep.

He slept for about 2 hours, with no desaturations or apneas. When he woke up, he was a tad fussy, but not hysterical. A few popsicles and watching Cars on the PICU television settled him down nicely. He was fussy off and on throughout the day, and fell asleep for the night at 11:00pm.

He set off the alarms quite frequently during the night, but only once for a desaturation and only about 5-6 times for apneas. The alarm was constantly going off for "extreme brachycardia" (slow heart beat) which caused me some panic. The nurses explained this is a common (and normal) heart rhythm in children.

In the morning, he ate some jello and had a few more popsicles. The attending came in the morning to discharge us, and we headed home. Nolan was doing extremely well on the car ride home, even crying for french fries from McDonald's. We kept him to smooth foods that first day, just to be safe with his throat- so no fries for poor Nolan.

He ate macaroni and cheese for dinner last night and had oatmeal for breakfast this morning. He is refusing to drink anything, but will eat Popsicles. We're using Popsicles for his hydration needs, and hopefully it will be enough to stave off dehydration. Keeping up on the Tylenol with Codeine seems to be the most important thing at the moment, as he gets cranky as he gets toward the end of the 4 hour interval between doses. I have been warned, however, that the real pain of a tonsillectomy occurs later in the week- something that someone else who has been there confirmed. Sometime around day 7-10, the scabs in Nolan's throat will fall off and his throat will be extremely raw- this is also the time he is in danger of bleeding.

For now, we are managing quite well and he is becoming quite the Popsicle addict. Those Mighty Minis ("slow melt") are wonderful. I don't know what we would do without them!

Tonsillectomy Update

Recovering with a "Mini Melt" Popsicle

This is short and sweet because we're all tired. The tonsillectomy/adenoidectomy/PE tube placement went exceptionally well, Nolan had a completely uneventful night in the PICU, and we are home. He's eating popsicles and is doing amazingly well when we keep up on the Tylenol with Codeine. So far, this has been much, much easier than I expected it to be!

A more detailed update to follow.

Pre-Registered for Tuesday

I was a wee bit concerned this morning when I noticed that Nolan's cold seems to have gotten worse. He's slightly warm (99.2) and his nose is flowing. His tonsillectomy is on Tuesday, and the pre-surgical documentation states "Call the surgeon if the child has been ill within 7 days prior to surgery."

Beautiful. My mother-in-law is flying in on Sunday to help take care of Matt during the surgery, so I was really, really hoping we wouldn't have to cancel surgery.

I called our ENT's office and told them Nolan had a cold. She asked if he was coughing or had a high fever. Since the answer is "no," she said the tonsillectomy is still a "go" for launch. Some congestion or a head cold are acceptable (after all, the chronic congestion/colds are the reason we are doing the PE tubes and adenoidectomy). The low-grade fever is also OK, as long as it doesn't get above 101.5 F. Nolan normally cycles between 96 degrees-100 degrees anyway, so we're not too worried about the 99.2 degrees he's currently sporting. And no, we never have figured out why he has cyclical temperatures- it's just another part of the whole "mystery diagnosis" thing.

They pre-registered him and gave us the instructions and time of the procedure. No solid food or milk after midnight, diluted juice allowed until 5:30am. Do NOT give him his Nexium (this is a change from our MRI instructions, when we were told to give him the Nexium). We will check into the hospital at 7:30am and the surgery will be performed at 9:30am.

After a $250 co-pay, we're all set for the surgery on Tuesday. I am really praying that the rest of this cold disappears before Tuesday!

Preparing for Nolan's CPSE: Deciding on Services

Nolan's CPSE meeting is rapidly approaching, and our wonderful speech therapist asked us to start thinking about what we would like for services next year. We currently get speech therapy an amazing three times per week, which is quite good. Many children only get speech therapy once per week. Our county does not have any teacher of the deaf services for children younger than kindergarten, so our speech therapist covers all roles with ensuring Nolan's language development stays on track.

When Nolan graduates to the school district, we would like to maintain two days per week of speech services. While his language is on par with his hearing peers, he has lost some sounds that he used to have- most notably /f/ and /v/. These are more difficult sounds for a child to obtain, but Nolan used to have them and has since lost them. "First" now comes out as "horse" and "for" is "hor."

He never had a true /v/ sound, but used to substitute /b/ for /v/, which is normal for his age- "biolin" for "violin." He has now lost the sound entirely. He substitutes /h/ for /v/ now- saying "hiolin" for "violin." Since he is not voicing the letter in this position, it is likely he is not hearing the /v/ or the /f/ in these words. He also occasionally confuses /m/ and /n/, saying "nilt" for "milk" and "meed" for "need."

Because of the articulation issues, we are likely to maintain the two days per week of speech services. I don't have the official articulation scores yet, but he will probably score lower this time than he did last time, due to the loss of those sounds.

The next pressing issue was whether to include classroom services by our therapist. Nolan doesn't actively engage during library story hour or during circle time at his 2 year old preschool program when I am present. I have mixed feelings on the subject, because I don't know if having classroom services would be more distracting or helpful to Nolan. I decided to ask his preschool teachers about the idea, since they see Nolan during the entire portion of the 2-year old program and I am only present for the parent/child portion.

They did agree that Nolan is clingy and doesn't participate when I am present. However, he does just fine when I am not there, behaving and participating in the same manner as his peers. This doesn't surprise me, since we have the same situation with (hearing) booth tests. They feel he doesn't need any help in the classroom. They also said they were impressed at how much Nolan knows and understands (such as colors/shapes/letters), and that many of the children without any "special needs" do not have these concepts. Of course, with one-on-one therapy three times per week in a quiet setting, he's ahead of the game when it comes to many of the more academic pursuits.

Because of this, I think we will request the 2 days of speech therapy (45 minutes each session) and not ask for the classroom services. If we feel he isn't doing well at preschool, then we'll reconsider at a later date.

This and That

This week seems insanely busy. Between therapy, preschool, library story hour, and Mothers of Preschoolers (MOPS), my week is so full I don't have time to do laundry. My next project will be trying to have a lighter schedule!

Nolan's CPSE meeting is set for April 27. I am getting very anxious about this meeting, as we are in the middle of testing him with the PLS-4 and he is doing rather well. While I'm thrilled that he is making leaps and bounds with language, I'm also concerned that we'll lose services. Our SLP wants to point out his "language holes" and articulation issues to keep his services intact- otherwise he'll get absolutely nothing in the years preceding Kindergarten. I'd like to have him monitored, at the very least, until he's in Kindergarten. I'd rather prevent a delay than work to remedy one.

Nolan has his tonsillectomy scheduled for April 13.. which is next Tuesday. He's also developing a runny nose. I truly hope a cold doesn't delay the operation, especially since we have family coming in from out of town to take care of Matt during the procedure. Mr. Nolan has also been rather cranky- I'm not sure if he is getting sick or if he is just trying to become the poster-child for the "Terrible Two's."

He also had a complete freak-out attack at MOPS when the nursery worker tried to change his diaper. He shook, cried, and went hysterical for a full 45 minutes after she tried to change his diaper. This is going to present a challenge when we go to California for John Tracy. I either need to get him toilet trained (unlikely) or more comfortable with others changing him. He has a bit of "white coat syndrome" from recent medical procedures and won't let anyone but me take care of him.

I also need to call the pediatrician to get a TB test scheduled for the John Tracy Clinic Summer Session, but I think I will wait until after he is recovered from the tonsillectomy before I have that test performed. I don't want to take him into the pediatrician's office until we are free and clear from the tonsillectomy (we simply don't need any more germs to contend with- preschool offers enough)!

Nolan's speech continues to blossom and we are getting longer phrases from him. Recent "Nolanisms" are:

• When asked "How old are you?" he answers with "THREE!" instead of two, with a devilish grin.
  
• I asked him if he would stay little forever. He answered, "No, I big boy. I be Spiderman (when) I grow up!"
• "Dinosaurs eat tigers for lunch."
• "I want candy for lunch."
• "I want to go to Disneyland tomorrow."
• "I want coffee in my (sippy) cup."

He's definitely developing more personality!