In the case that you get the blog update via email, go to the weblog at www.ncslaviks.blogspot.com to view this video.
Friday, April 29, 2011
Based on history, things weren't looking good for this FSP day. And when Will woke up today, things were looking even worse! He woke up with the cough that Luke and Matt have had, accompanied by stridor, chest retractions, and difficulty breathing. We drove to the doctor immediately. I thought for sure they would send us straight to the ER.
Will got a nebulizer treatment and a huge syringe full of steriods to decrease the stridor. Within a couple of minutes, he calmed down and the noisy stridor breathing lessened. Over the course of the next hour, the stridor decreased and they told us we could go home. Will was in a good mood, he wasn't having any more chest retractions, and with the steroid in Will's system, things were only going to get better.
By this point, we were late for horseback riding. But because I thought Will was SO going to enjoy the FSP day, we drove to the therapeutic riding center rather than home.
When we arrived, Will's horse Diablo (kind of a bad name for a gentle 19 year old therapeutic riding horse...) was waiting for him. Because Will isn't able to sit up, the riding instructor faced Will backwards on Diablo's back and laid him on his belly. Will was a little hesitant and nervous at first. Diablo was just as cool as a cucumber.
But by Diablo's third step with Will on his back, Will's mood changed. I think he fell in love with that horse! Will started giggling and smiling from ear to ear.
Will is still gaining head and neck control, so at some point during one of Diablo's many trips around the ring, Will had to put his head down. He just loved that walking motion so much. I thought he fell asleep! But as it turns out, he was awake... so happy, just enjoying this time. Eyes closed, smiling face. Just so peaceful and relaxed.
When we were done, we took a photo with Diablo and one of the volunteers. What a great time! You were right Tammy, Will loves riding! Now I am on a mission to find a therapeutic riding program closer to our house. I think this is something that Will would enjoy on a regular basis. It was certainly something that I enjoyed sharing with him.
Thursday, April 28, 2011
They looked into my eye. Made me look up. Then down. To the right. Then the left. The doctor pulled away and asked, totally seriously:
Are you under a lot of stress?
I had to laugh. Um. Yes. I have three kids.
He wasn't really joking though. He asked: recently, have you been under an enormous amount of stress?
Me: Well... since you asked. We just moved. One of my sons doesn't sleep more than 3 hours a night. My other two sons are sick. Our CNA lost her house in a tornado so we're trying to break in someone new, all during the same week that two of my sons start back to school. Should I go on?
He looked at me like I was crazy. And then he asked:
Is is possible for you to get an hour or two more of sleep a night?
I started laughing out loud. Wow, I'd love that.
As it turns out, your eyes are very sensitive to stress. Some people eat when they're under a lot of stress. Some people have headaches or back spasms. Apparently the blood vessels in my eyes get irritated. I have never heard of anything like this. Ever.
I'm on a steriod eye drop and a regime of ibuprofen for the next week. My eyes already look better (just in time for my birthday today!). Who would have thunk it?
Tuesday, April 26, 2011
In the mean time, I thought I'd share this awesome photo of Luke. He has made fast friends with a 6 year old girl next door. Often, he goes to see her and her mom before coming inside our house each afternoon upon arriving at home!
Lucky for Luke, she has a Power Wheels. Not just any Power Wheels... a bright pink Barbie Power Wheels. What is it with little boys and Barbie? I can remember my brother back when he was about Luke's age, wanting to play Barbies with me and my 9 year old girlfriends. We gave him the naked Barbie with a safety scissor crew cut. He went running off to my parents, crying that he didn't like naked ladies. Sorry Drew. Had to tell it.
Anyway, Luke has finally figured out how to drive the Power Wheels, both forwards and backwards. Look out! Note his huge grin and Spiderman helmet as he (very slowly yet excitedly) propels himself forward.
We've been told that we'll be inheriting the Power Wheels shortly, as our neighbor friend is outgrowing her ride. Not sure what to do about the pink truck body (maybe Luke wants to keep it?)... we might be able to paint it camo or something. But I think the tires will always be purple. Just a little homage to America's favorite impossibly-proportioned lady :)
Sunday, April 24, 2011
Over the past several weeks, Will has really been having a hard time sleeping. He can't tell us what is going on, so it is up to us to figure out what is going on. A lot of times, we can guess correctly. And sometimes, we just can't quite figure it out. This is both frustrating for Will and for us when this happens.
We aren't sure if Will is having some anxiety over moving (which wouldn't be unusual right now, given what I recently wrote about Luke). We aren't sure if he is in pain. Or if he's having lots of small seizures. Or if his muscles have started tightening as he sleeps. We just don't know.
What we do know is that Will isn't sleeping. He has had a couple of seizures around bedtime despite his current anti-epileptic dosage increasing. He is generally crabby - perhaps because he isn't sleeping?
I mentioned this to Will's CP doctor, who we go to for all things special needs related. I know that it isn't uncommon for kids with CP to sleep poorly, but surely there had to be something we could do. I need a lot less sleep than I used to before kids... but waking every 2 hours at night is starting to take its toll.
Will's doctor recommended a sleep study. This sounded so simple. Something we should have probably done a long time ago. I can, after all, count on two hands the number of times that Will has truly slept through the night since he came home from the NICU. I'm kind of tired.
So they squeezed us into a sleep study slot tonight. We got here a little late from our Easter dinner with Stara and family, and they quickly ushered us into our room. Will was in a good mood. For those of you who have undergone sleep studies, you understand that he didn't stay in a good mood for long.
The first thing they did was have me change Will into his pajamas. I also set up Will's night time feeding pump.
Next, they attached 10 EEG-like diodes to different locations on Will's head. Then they attached 2 more to the outsides of each eye. Then they stuck 2 more to his jaw. Tape and stinky glue all over the place. I guess the idea is that for thrashy sleepers, they don't want the diodes to come undone. For my son who is only able to move from his side to his back while he sleeps, this was overkill and made him so mad!
Then they stuck 2 diodes to his back, another 2 to his arms, 4 to his legs, and velcroed 2 belts around his chest to measure his breathing while he slept.
Will screamed in protest the 30 minutes that it took to set everything up. He wasn't sad or scared. There were no tears. He was just beyond mad about what was happening.
Just when I calmed him down and got him settled into bed, our tech came back into the room with a pulse-oximeter for Will's toe (he's used to these!) and the final kicker - nasal cannula for his nose. Of course this meant more tape for Will's face, more agitation that he couldn't go to sleep, and more anger over not being able to stop what was happening!
Nothing about a sleep study is restful, I'll tell you that! What a misnomer.
So now Will is finally sleeping. Not sure how, considering all of the electronics taped to his body. The lights are out completely. The sound machine is on. The tech is watching Will's every move on an infrared camera over my head.
It is kind of like camping, only not. I can't watch TV, can't talk on the phone, and when I need to see something, I use the flashlight app on my smartphone... I am trying to type as quietly as possible!
As I am finishing this post, Will is rousing at his typical 10pm time... the first of many times each night that Nate or I goes into his room to adjust him, loosen tight legs, or spray his nose with saline. I pray that the annoyance that Will is going through tonight will lead his doctors down a path of discovery which will enable Will to sleep restfully through the night.
Wednesday, April 20, 2011
But it now seems as though Luke has been having the toughest transition. He keeps asking when we're going back to the old house. Perhaps it isn't just the house though. As an unfortunate side effect to our move, Luke and Matt had to change day care centers. We all really loved our old day care and especially the people there, however with our new paths of travel to work, going to the old day care every day would have been several miles in a different direction.
We called Luke the "little mayor" of his old day care because he was so well loved and moved easily between many different friends. With a new day care comes a new teacher, new friends, and new rules. I do the drop offs each morning, and with the exception of this morning, Luke has cried each day I dropped him off.
"Mommy, I want to go home."
"Please, Mommy, take me with you to work."
"Can we go back to my old day care? I don't want to go to a new day care."
"Let's run away to Mexico together, Mommy."
Ok, so maybe he didn't suggest we run off to Mexico, but the other three statements came out of his mouth. On a typical drop off this week, I would stay in Luke's classroom with him almost 20 minute before he would stop crying and allow me to leave. It also didn't help that within his first two days at day care, he ran a fever and had to miss a day and a half.
Luke has been throwing a lot of temper tantrums since we moved... testing boundaries like any good independent, intelligent kid with a good bit of self esteem would do at the ripe old age of 4. He has also come into our room around 2a each morning because he doesn't want to sleep in his room anymore.
Thankfully today was a little better. Nate made Luke a scrambled egg for breakfast, but because Luke refused to get his shoes on (this fight lasted about 20 minutes this morning - stubborn kid! I can't imagine where he gets it from!), he didn't have time to eat it at home. I packed it up, and Luke got to eat the egg around the table at school with the other breakfast eaters there. Rather than cry upon entering the classroom, he was happy to sit down and eat. I left as quickly as I could as to not disrupt the magic. But of course I watched from the window for a long time, and was so happy as Luke engaged energetically with his peers.
I am reminded that when Luke started at his old day care, we had several weeks of transitions. Though this is frustrating now and was also frustrating back then, I am encouraged that each day seems to be a little easier for Luke. Hopefully as we settle into a new comfortable routine, the temper tantrums lessen and Luke starts sleeping through the night again.
Keep your fingers crossed for Luke, and we'll keep scrambling eggs.
Monday, April 18, 2011
So we didn't stress over decorations, food, cake, or any of that. It was really more about getting together and celebrating one year of our youngest boy. I was asked several times towards the end of the week what people could bring, and I honestly couldn't answer because I hadn't had a chance to think about it. See, low expectations can be a good thing!
Plans finally came together on Saturday morning. So did the perfect storm, unfortunately. We realized early on Saturday that the National Weather Service was predicting dangerous weather for party time. No way to plan the weather, so we prepped all the food that we could in case the power went out. The only thing we would have to do during the party was heat up the macaroni and cheese...
Matthew was in a festive mood as people began arriving. He's hitting a stage wherein he doesn't like strangers, so it took a while for him to warm up. But eventually he did, so we passed him around. Everyone who attends a kid's first birthday wants a little loving before the toddler years hit.
We had a fun time chatting and playing before the sky turned dark. We turned on the Weather Channel and saw that we had a tornado warning. We kept an eye on the TV as we munched on appetizers. We started to heat up the oven for that yummy mac and cheese.
Then they reported that a tornado had touched down in downtown Raleigh. My thoughts went immediately to friends who lived in that vicinity. The path looked like it was headed our way in Wake Forest, so we split the kids in the master closet and the adults in the laundry room. We took toys with us, so it wasn't too bad for a while.
The power went out. Outside, the wind howled and the rain just poured. Our little trees got a workout. Inside, Luke got upset that the lights went out. We sang the Wheels on the Bus to pass the time.
Eventually the sky lightened. We desperately sought information on our Androids. The threat had passed, so we emerged from our closet hideaways. The mac and cheese hadn't gotten a chance to heat up. But then Nate remembered that we had lots of propane for the grill. So we experimented with grilled macaroni and cheese...
We decided to have cake while we waited. Thankfully Matthew liked cake more than Luke and Will did on their first birthday (when they threw it up!). It took him a while to get into it, and we never really got the icing covering the face, but he very deliberately ate cake and avoided icing.
The grilled macaroni and cheese was actually a hit! Everyone was in good spirits as we all called loved ones to let them know we were all ok. It was certainly a party that we will remember forever...
Friday, April 15, 2011
The first part of the move went pretty well. With the help of a couple dedicated friends, we were able to move a lot of the heavy furniture and essentials last Saturday. On Sunday, we started moving some of the less essential stuff. A little slower than Saturday. With a little more pain.
And then Monday hit. New day care. New travel times to and from work. A virus with fevers that hit all 3 boys in rapid succession, and unfortunately caused Will to have a seizure. Ugh. It was - thankfully - a single, short seizure.
So the last 2% is dragging. The goal is to get it moved soon so that we can have everything in one place and start the daunting task of unpacking. Don't you just love moving?!?!
Wednesday, April 6, 2011
Confusing... a bit! Lots of things to juggle.
So we settled yesterday and plan to move this weekend. Unfortunately we just learned that a couple of people that we lined up to help us move have to back out! Nooooooooooooooooooo! You know what they say about the best laid plans... But in an effort to keep things on track, we're going to power through the set back and still plan to move this weekend.
That's where the blogosphere comes in. If you can answer 'yes' to any of the questions below, you might be willing to help us move this weekend. :)
I know, I know. No one enjoys moving. We wouldn't be asking for help from our village if we didn't need it! Any amount of time you have would be welcome, any day if the weekend. Please email me at firstname.lastname@example.org if you're willing and able!
Tuesday, April 5, 2011
The time has come for us to move back into the very-adult, responsible, scary yet sensible world of home ownership! But despite rumors to the contrary, we aren't moving very far!! We have found a wonderful ranch house just a few miles away from our current house and are closing on it today! We feel so fortunate to have found a home in the area that we wanted (very close to Will and Luke's schools) and a floor plan that we love that is very accessible and easy for all of us to maneuver in. What a relief!
We're also very fortunate in that we sold our house 2 years ago and have been living in my mom's house ever since. It has been our safe haven during some difficult times over the past two years. When we started living in mom's house, Will was classified as failure to thrive. We cleaned up more vomit in this house than we ever thought possible! We made the difficult decision to have a surgical g-tube placed here. A couple of months later, I was placed on bed rest and Nate's contract position was eliminated. Looking back, it is really surprising how many challenges we were faced with in such rapid succession.
Thankfully, we're a couple of tough cookies. We weathered through those tough years, and came out stronger than before. Over the past year, we've welcomed Matthew into our lives, Luke and Will are thriving in their pre-K programs and have been healthy, and Nate is happily employed again. We are ready to start this new chapter! We're eternally grateful to Oma and Opa for allowing us to live in their house for this long, and are looking forward to their North Carolinian relocation later this year!