Saturday, February 27, 2010

The trouble with 'noids

... not to be mistaken with "the trouble with 'roids"...

Will's ENT appointment this week revealed the source of his perpetual sinus infections and congestion! But before all the snotty details, the backstory...

We went to our first ENT back in August, when Will started showing signs of regular congestion. He had his g-tube placed in his stomach in June, and typically a g-tube will cause a child to have increased acid reflux. In some cases, excessive acid reflux can cause nasal congestion. So post-g-tube surgery, we ran the gamut of antacids. Will was still getting congested.

So we went to the ENT in August. After waiting in the waiting room for almost 2 hours, we were finally seen by a clearly tired and agitated ENT. Her prognosis: your son has very small nasal passages. Try this nasal steroid and come back in 2 months if there is no change.

Um... yeah right.

Since August, Will has had 4 sinus infections which have been successfully treated with antibiotics. Clearly we're dealing with a bacterial issue, not a nasal passage size issue!!

We got another recommendation for a pediatric ENT, and saw him this past Thursday. He evaluated Will thoroughly and determined that Will needs to have his adenoids removed. Apparently adenoids are known to harbor bacteria. Some people's bodies can fight it, others can't.

Interestingly, Nate had adenoid and throat infection issues when he was younger, and had his adenoids removed after high school (aside from a deviated septum, he's been much better ever since). We aren't sure if adenoid issues are genetic, but at least Nate will have an adenoid-less buddy at the dinner table from now on.

So Will's looking at a 30 minute surgery in the next couple of weeks. We're praying this does the trick. He'll have a sore throat for about a week, but the ultimate result will be great! He won't be perpetually congested (when not on antibiotics) and won't gag nearly as much!

My hope is that this will also help with his weight gain... Will is still predominantly bottle fed because of his swallowing issues. When you can't breathe through your nose, its hard to bottle feed. Additionally, when he's really congested, he gags and vomits a lot (he doesn't vomit at all anymore when he isn't congested). Pediasure on the floor does not a fat toddler make!

Thursday, February 25, 2010

Photo freak out

One of the things they recommend you do while on bedrest is organize your photos. As many of you know, I am an avid scrapbooker (when I have the time and ability) and therefore, have many photos that have yet to find their way into a scrapbook.

I was recently admiring some of the photos from our trip to the Outer Banks in September. I blogged about that trip (see Peace post) but didn't use all of our photos on the blog. Anyway, I was looking at this photo of our day trip to the Currituck Beach Lighthouse.

Nate took this photo from the bottom of the lighthouse steps before we began our long ascent to the top. He thought the photo would be cool and artistic.

As I looked closer at this photo, I started to get freaked out a little bit. Maybe I have seen too many episodes of Paranormal State and Psychic Kids on the A&E channel, but to my untrained eye, it appeared as though there was some type of... figure... at the center of the stairs. The lighthouse is more than 100 years old, afterall. It could be haunted.

Thank goodness for Adobe Photoshop. If you look below, the figure at the center of the steps is actually another guy who thought that taking a photo from the top of the lighthouse looking down through the stairs AFTER his ascent would be a cool photo op! Totally random that this guy and Nate had the same thought at the same time though!

I wonder if they see Nate in their photo and are as silly as me!

Evaluation Round 2

Luke's special needs pre-school evaluation went pretty well on Tuesday. The evaluation team included a special needs pre-school teacher, child psychologist, occupational therapist and speech therapist.

Luke was shy at first. Nate said that he wouldn't leave his lap and kept his head hidden. But those pre-school teachers, they are so smart. She pulled out paper and some markers and Luke was off and running (not literally). He practically fell on the floor when she pulled out scissors - and he wowed them with his advanced paper cutting abilities.

The therapists went through their barrage of standardized type tests (mostly for occupational therapy). During those tests, the child is presented with an object, and the evaluator wants to see what they do with the object - as a means to determine development level. No matter the standardized test (there are several that can be used), one of the points of evaluation always includes blocks. Standard square painted wooden blocks.

Luke hates blocks.

He likes Legos, he likes Matchbox cars, he likes Playdoh. He has always refused to play with blocks. We have no clue why.

At the evaluation, when presented with the blocks, he pushed them away and told the evaluation team that he was "all done." They tried to make the blocks fun by stacking them into a tower. He proceeded to knock down their tower and repeated that he was "all done." The evaluation team thought this was very funny. He played with everything and anything else in the room. But the blocks had to stay at least 2 feet away from Luke at all times.

According to the evaluating occupational therapist, Luke did very well in his evaluation and she wouldn't recommend him for ongoing occupational therapy... but she was unable to assign him with a developmental age because he wouldn't play with the blocks. She simply couldn't grade the test without the block play.

I know that in certain realms, standardized tests are good. In some cases, I'd even agree that they are necessary. But in this case, I think that standardized tests are crap... and totally unadaptable. I don't think this really has any effect on the outcome of Luke's evaluation, thank goodness!

Luke tried to escape the room after about an hour of evaluation. Nate said he was completely done. But he did very well and showed them the real Luke. So now we have to wait until March 9 for our final placement meeting. At this meeting, we'll find out if the boys need to go to a special needs pre-school, and if they do, what school options we have.

Its been a long process! All of us are happy that its almost over. Especially poor Nate, who is handling all of these things on his own while I lay down all day and watch 15 year old re-runs of Beverly Hills 90210!

Monday, February 22, 2010

Stinky Family

Our hot water heater kicked the bucket last Thursday. I should re-phrase... the actual hot water heater wasn't broken, per se, however it was not producing more than 4 minutes of hot water per day. We had a plumber come out on Thursday and Friday, both times they replaced the thermostats and thought that was it.

They were incorrect.

We had a plumber come out on Sunday... he found some other things wrong, again changed the thermostats and thought that was it. Wrong, again.

Finally, today, the plumber came out, worked on the hot water heater for about 5 hours, only to tell us that we had an electrical problem with the hot water heater!

One call to an electrician, 5 minutes of work to replace a breaker, and we're back in business. I'm a bit perturbed that it took 4 plumber visits over 5 days to determine that the issue wasn't plumbing in nature, but I digress.

So we haven't really been showering as frequently as normal. I tried, I didn't think it would be that bad. I've done a lot of camping in my day at places that didn't even have hot water heaters... but showering in 65 degree water when I am pregnant is a different story. It was actually causing some contractions, so I stopped quickly.

Finally tonight, the boys are back to their evening love - taking a bath. Its nice to wash little kids in warm water as opposed to ice water. They're much more agreeable.

And after today, Nate will no longer be accused of growing out a beard (thank goodness). He hasn't been going for the mountain man look... but he's been looking more and more like Mike Null these days!

We've got a very busy week this week... here are some highlights:
  • Will was fitted for his new gait trainer today. This is a piece of equipment that will enable him to stand up while fully supported and learn how to walk.
  • If you remember Luke's pony picture from the fall, you'll be excited to know that his school also does spring portraits. Today Luke posed with real live bunnies.
  • I have an appointment tomorrow with an obstetrical anesthesiologist for the last phase of Cart's delivery planning.
  • Luke has his Wake County pre-school evaluation tomorrow, similarly to Will's from two weeks ago. A few weeks from now, we'll know if the boys qualify for services and if they do, what school they'll start going to in March/April.
  • Will's long-awaited pediatric ENT appointment is Thursday. Hopefully we'll get a reason why Will has persistent sinus infections, and the ENT will know what to do about it so Will isn't on antibiotics every month.
  • And finally, on Thursday, I have my 32 week OB appointment. When I was pregnant with Luke and Will, my high risk obstetrician told me to circle my 32 week date on the calendar. Apparently babies born at 32 weeks - although they need to stay in the NICU for some time - have no longer term health effects from being a preemie. So of course, the plan is not to deliver Cart for another 7 weeks, however if something were to happen and he came early, we've passed another important milestone!
Man, its a good thing that Nate likes to play chauffeur!

Thursday, February 18, 2010

Will the Tiger, Luke the... Ewok?

I recently found some great bath towels for the boys, since they have far outgrown their infant towels. Just in time for brother Cart to start using them! The boys have always loved taking baths, hopefully Cart will too! We'll have to move them to the larger tub at some point, though, if the three of them take baths together.

I ordered Will a tiger towel since he loves to make a "ra ra ra" sound like a tiger roar. As you can see below, Will's towel is clearly a tiger and he loves it! He is always so excited to wear the towel. It keeps him warm AND decent during his post-bath excited kick sessions.

I ordered Luke a monkey towel since he loves monkeys. Only his towel looks exactly like an Ewok, like from Return of the Jedi. When he walks around after his bath, he shuffles his feet because his legs are cold. Then he looks just like E.T. in his white bedsheet Halloween costume! Not a monkey... just a cute creature from another planet!

I'm still on the lookout for more toddler bath towels like these... next time I'll have to pay more attention, though, so I don't get Jabba the Hutt when I thought I was ordering an elephant towel.

Wednesday, February 17, 2010

Valentine's Day Massacre

We're going to join the ranks of those who didn't have the best Valentine's Day (see the Hudson's River blog at right)... definitely a day to remember... not romantic, but perhaps notorious?

Since we've become parents, our expectations of Valentine's Day has definitely changed. Gone are the days of romantic evenings out, baking cookies, and flowers (though we hope to rekindle the cookie tradition next year with the boys). This year. we bought cards and said that a quiet day at home would be great. We don't have too many options right now anyway with me off my feet.

But who would have thought both boys would come down with a nasty virus on Valentine's Day? They both spiked temperatures of 103, vomited and were very cranky and lethargic all day. It was not a good time. The day itself went very slowly. We didn't exchanged cards.

Both of their schools were closed for President's Day on Monday, and they finally turned the corner of wellness on Tuesday morning (they stayed home just to ensure they were both really better and finally exchanged cards). They both went to school today - I think they were happy to get away from me and Nate! I'm sure all parents in the DC area understand this after all the recent snow days!

Ugh, I'll be very happy when cold and flu season is over!

Tuesday, February 16, 2010

The horizontal blogger

Well, its official. I am on bed rest. I got to my 30 week mark and my doctor decided it was time to take the plunge. So I am armed with a stack of books (which have been amassing since the boys were born), a backlog of magazines, and am contemplating a subscription to NetFlix.

I am not wishing this time away, however I do hope that it goes somewhat quickly. When there are entire websites and books dedicated to surviving bed rest, you know its not a good time. Sure, staying home and relaxing sounds like fun... but 9 weeks of it? Guarenteed boredom. And because I avoid birthing shows at all cost, that eliminates like 50% of daytime television!

So wish me luck over the next 9 weeks... because of some complications, my doctor is planning a c-section when I reach 39 weeks pregnant. So - barring any unforeseen circumstances or emergencies - Cart will likely be born closer to April 16 than April 23. I need someone to explain the difference between an Aries and a Taurus to me... Aunt Kylie?

Thursday, February 11, 2010

Evaluation Round 1

Today was Will's official evaluation by the Wake County Public School System's special needs pre-school team. His evaluation team consisted of a physical therapist, a speech and language pathologist, a vision therapist, a pre-school teacher, and an occupational therapist. It was also supposed to include a child psychologist (!) but she called in sick today.

So Will and Nate spent the better part of an hour playing with various therapists. Will really did well! Nate took a couple of Will's favorite toys with them, to put Will at ease while running through his bag of tricks. All of the therapists were very happy with the progress that Will has made, and his level of intelligence and involvement.

At one point, the speech and language pathologist was asking about Will's verbal repertoire. Will has a number of single syllable sounds these days (ma-ma, da-da, ra-ra, etc). So Nate asked Will to say "da-da," to which Will responded "aaaaaama." The speech and language pathologist went to praise Will for his good job when Nate stopped her. He repeated his request for "da-da" to which Will responded "da-da" with a smirk. Nate turned to the speech and language pathologist and told her that she just got played by a 2 year old!

So now we wait for a little while, during which time they will determine which services Will will receive at his special needs pre-school (we are anticipating that he will receive the same therapies that he gets now), as well as which school he will attend. What we really want for Will in his new pre-school is a supportive environment which provides all the services that he needs, but also really pushes him to his full potential. We're going to have to warn his pre-school teacher about Will's games! His current teacher certainly doesn't let him get away with anything and calls him out when he's trying to do less than she's asking.

In a funny twist, when Nate pulled out the bag of wooden fruit for Will to play with, one of the evaluators exclaimed "I've seen the falling fruit video!" One of Will's physicians reads our blog and was so enamored with the falling fruit video that he sent it out to a local listserv for therapists and parents of children with special needs. Our thought is that this therapist is on the listserv, although she told Nate that she saw the video on YouTube... someone let me know if Will's falling fruit video is out there on YouTube!

Evaluation Round 2 is later this month, when Luke has his official evaluation. This whole process is very long (we've already had 2 planning meetings and the boys had audiology testing). Hopefully we get through it in one piece! The goal is to place them in their new schools (if they are both determined to need services - the question now is if Luke still needs them going forward) by their 3rd birthday on March 11.

Monday, February 8, 2010

Little hands make little pizzas

I got Nate two Rao's cookbooks for Christmas - mostly to encourage his interest in cooking, and partly for myself... I am a self proclaimed cookbook addict and felt less guilty buying cookbooks for him than for me (grin)!

So since the cookbooks became part of (ahem)... OUR cookbook collection, we've made some awesome marinara sauce and a tasty pasta e fagiole. This past week, Nate got the desire to make pizza from one of the cookbooks.

I am not talking buy-a-Boboli-and-dump-on-some-jarred-sauce kind of pizza. I'm not even talking about buying dough... he actually wanted to make the dough and makie the sauce. Thankfully we got to buy the cheese.

We turned our kitchen into a pizzeria this past weekend and found some cheap labor. Luke and Will got to help make the pizza and Otis was kind enough to clean up anything we dropped on the floor (yes, his appetite has returned). Luke enjoyed kneading the dough and Will helped grate cheese. It was really a fun time. I thought they would be too young to enjoy themselves, but that was definitely not the case.

The pizza turned out great (aside from not being round)! With all the time it took the dough to rise twice, the boys weren't awake the see the final result. We didn't leave any evidence either!

Saturday, February 6, 2010

29 weeks and 2 days

I rarely blog about myself. But today is an important day for me... I am officially 29 weeks and 2 days pregnant. Now this might not seem like an important gestational time for anyone else, but for me, this is a big deal. I delivered Will and Luke at 29 weeks and 2 days, and started off the whirlwind that has become the past 2 years and 11 months. March 11, 2007 was the last time I was 29 weeks and 2 days pregnant, and I've worn it like a badge. Not sure, though, on what kind of badge it was - courage, fear...?

I never fully realized the impact that 29 weeks and 2 days would have on me - then or now. Since the boys were born, every physician, nurse, therapist and social worker has wanted to know at what gestational age the boys were born. They wanted to know the circumstances surrounding my delivery, almost 11 weeks prematurely. So 29 weeks and 2 days has always been the start of that long story, and has always been met with somber response. Aside from the fact that it was the date of my sons' birth, it is the scariest day of my life.

Since I learned that I was pregnant with Cart, 29 weeks and 2 days has always been in my head - but it was in neither a good or bad way. I thought that, probably, I'd have an emotional response as I neared that day. I found myself shying away from people's questions about how my pregnancy was going because I didn't want to jinx myself. But from a logical perspective, I knew that with Cart being a single baby, with the weekly progesterone shots that I am getting, and the fact that I was better about taking it easy this time around, I would probably pass 29 weeks and 2 days with little event.

I am not going to lie - this whole week was tough on me. I did my best to stay as busy as possible to avoid dwelling on each day, what it meant, where I was the last time around. But despite my best efforts, I woke hourly last night in fear that something was going to happen. Nothing happened, and I am tired today... but so relieved.
Interestingly, I no longer find it necessary to read my baby books to find out what is going on gestationally with Cart. From today on, I have memories of watching Will and Luke complete the remainder of their gestational period right before my eyes. I'll never forget that when Will was born, he didn't have any cartilage in his ears. When we would take off his teeny tiny hat to give him a bath, his ears would be absolutely molded to his scalp. I'll never forget the thrill of feeding Luke for the first time, because he had finally hit 33 weeks gestation and finally knew how to suck.

At our last appointment, we learned that Cart is about 16 inches long and weighs about 3 lbs... almost the exact size of Luke at birth. I take comfort in the fact that every day from now on is new ground for me and my whole family. I am thrilled to think that with each passing day, the notion that my body failed me can fade further into the past. And I am excited to pack my hospital bag - something I never got to do with my earlier pregnancy and something I haven't done to this point, again, out of fear of jinxing things.

So celebrate with us - tomorrow is 29 weeks and 3 days! Its a whole new world, and its looking damn good.