And of course, the highlight of our trip - our most adorable new family member.
Wednesday, November 30, 2016
Phoenix November 2016
We have some family in Mesa and it had been 18 months and one new niece since our last trip out there, so we thought it was high time to go again. It is such a relaxing and fun place to be for families. Boy do they have amenities. The city parks are abundant and phenomenal. We went to one park that had model trains to look at and ride, and another park with ferris wheels and mini fair rides. I mean coming from Kitsap County where we think a park is good if it has a slide and a swing, this was jaw-dropping for us. But mostly, we LOVED spending some quality time with our family.
And of course, the highlight of our trip - our most adorable new family member.
And of course, the highlight of our trip - our most adorable new family member.
Wednesday, November 23, 2016
Disneyland November 2016
We went to Disneyland at what we thought would be the lowest of the low season: the first few weekdays of November between Halloween and Christmas decorations. This was a perfect opportunity to see if it is worth manipulating schedules to go to Disneyland in the slow times. The verdict? Though the crowds were low, Disney is a world leader in the art of crowd control and they shut down tracks, remove extra cars, and have less staff during the super slow times and you end up with almost the same line times in the most popular rides (read 45-60 min waits for Peter Pan during Magic Morning on a weekday). They had very few esoteric characters out for short times and had no parades or fireworks. BUT, we got to ride Gadget's Go-Coaster over 15 times with no wait because we were riding at night, and we hopped on to most of the less popular rides with little to no wait at all - I guarantee you that during the busy times that wouldn't have been possible... so tradeoffs. We had hoped to hit cooler weather so Miles wouldn't be exposed to the high heats (it reportedly lowers the seizure threshold) but each day was OVER 100 degrees! That said, it was still fun, amazing and magical because, Disney!
My mom came with us and was so helpful and fun to have around. She was the original Disneyphile in the family and Disney is just not the same without her. Plus, Miles went to sleep one night at 5pm and slept 12 hours straight and my mom made the ultimate Disney sacrifice and stayed with him in the hotel so we could play with Kai in the parks.
I was quite worried about waiting in the lines with a very active toddler and I packed a duffel bag full of activities and snacks, but turns out we never needed any of it and used only a handful of my endless arsenal of tricks. Right from the start Kai was happy to wait. We played a treasure hunting game where we would toss change into the area around us in the line and he thought he was finding gold every time and kept handing me the "treasure" to hold which we would then re-toss in areas he wasn't looking and it really never got old. I had a couple of his favorite Cars toys which entertained him most of the time and occasionally we looked back at pictures we had taken over the course of the day. Though we didn't use them this time, the last time we went to Disney we did bubbles in the line with a Buzz Lightyear bubble gun that Disney sold and it was a big hit.
My mom came with us and was so helpful and fun to have around. She was the original Disneyphile in the family and Disney is just not the same without her. Plus, Miles went to sleep one night at 5pm and slept 12 hours straight and my mom made the ultimate Disney sacrifice and stayed with him in the hotel so we could play with Kai in the parks.
Kai is a thrill seeker!! But at 38" he didn't make the cutoff for the roller coasters aside from Gadet's Go-Coaster, but he didn't know what he was missing so he was pretty much on Cloud 9 the entire time. He loved every ride so much but his favorites seemed to be Casey Jr and Gadget's Go-Coaster which he could have rode repeatedly. His reported favorite was the Alice in Wonderland ride, and he still talks a lot about the Nemo submarine and talking with Crush.
First time on Casey Jr and his excitement could not be contained
Though we stayed onsite, we plowed through nap time our first day because both kids seemed to be doing pretty well. To our surprise, Miles loved all the new sights and sounds and seemed to truly enjoy the rides. He napped well in the Ergo and overall seemed to enjoy the experience. Unfortunately, by the time it got to about 7 the kids both hit their walls and though Kai was still having fun, he was past exhausted.
Those are TIRED eyes waiting for our last ride of the day
Our second day was a lot harder on Miles. We weren't sure if it was the increased heat or the fact that he could go one day without naps in the land of overstimulation but two was too many, or both, but he definitely hit his wall early in the morning. It was probably about 11 in the morning and already 104 out and Miles started doing the thing that makes me think infantile spasms. I tried to change his set up but the spastic spasm-like things continued and we ended up racing back to the hotel to put Miles down for an air conditioned nap. He and Kai both took long naps and when we headed back out over four hours later (oh the sacrifices we make for our children), Miles was less than happy to be back in the park, and lasted only another hour before he went back down for the night. I think about that day often and wonder if we saw seizures there or if he was just extremely overstimulated and we will never know. It was a scary dose of reality, and I do worry about future trips to Disney or anywhere really... but it's the new normal! Our plan is to avoid the heat, try to take it a little slower, keep packing the Diastat (rescue seizure medication) and wish upon a lot of stars.
3
Wednesday, November 2, 2016
Nephrology, Cardiology, Neurology, Oh My.
It's the smell of the hospital that hit me first.
Perhaps it's the omnipresent hand sanitizer, or the perpetual use of cleaning products, or maybe it's truly just the recycled air stale with sickness and bleached with sanitation, but whatever it is after a wonderful couple of months away from Seattle Children's Hospital walking back in to that wall of smell hit me harder than if I had literally walked into a brick wall. My heart rate skyrocketed, my vision blurred with tears then white washed as the blood drained from my head, and it was suddenly hard to breathe. I did not want to breathe in that air. I couldn't.
And this was just a check up.
Today we went back to Seattle Children's Hospital to re-check Miles' kidneys. You likely recall, at birth they said his kidneys were teeming with cysts and diagnosed him with polycystic kidney disease. However, a couple months ago at Swedish (where we have been having most of our care these days), the nephrologists and radiologists were only able to find one cyst and we all thought we had seen a miracle. Unfortunately, today our miracle was proven false and our faith in doctors rocked. The radiologists at Children's found just as many cysts as they did last time and couldn't explain why Swedish would have seen something different. They kept pointing out that they are the leading Children's Hospital in the country for nephrology and that Swedish likely doesn't have the technology or experience to deal with infants... and they may be right, but seriously to go from innumerable cysts to one? We are frustrated, confused and disappointed... the dangers of optimism, I guess.
On a more positive note, last week we saw the cardiologist and got some pretty good news. Though Miles' heart isn't improving and that valve is still completely failed it turns out he actually may not need his second open heart surgery until he is five or six or possibly even later. The doctor said we should be prepared for him to need it when he's two but that most of their patients with this procedure actually go much longer until that second surgery is needed. This is the first time we heard this news and it was very welcome. Taking a toddler in for open heart surgery that can't be reasoned with sounds like an absolute nightmare. Furthermore Miles is growing astonishingly well. At 15 pounds and 26.5 inches at 5 months old he is now in the 25% for weight and over the 75% for height! Over the course of this last month, he was growing at a rate nearly double the average baby.
Last week we also saw the neurologist and we got some more good news there. Unless Miles is doing things we aren't catching, it looks like he still isn't having seizures. The longer Miles can go before his first seizure, statistically the better his chances are for a good developmental outcome. We are told time and time again to expect the seizures that they will start some day, but we are just hoping and praying for as much time seizure free as possible. Additionally, 50% of people with Tuberous Sclerosis are on the autism spectrum, but Miles isn't showing any signs of being on the spectrum; on the contrary he is extremely social. Until this appointment, I hadn't thought much of his excellent social skills because I know autism is often a degenerative disorder that hits a typical developing child in their toddler years. However, apparently, the type of autism associated with tuberous sclerosis is mostly linked with early onset autism that should be identifiable within the child's first year. So that gives us a lot of hope. Our research led us to believe the worst outcomes for TS kids were closely tied with infantile spasms and severe autism so we are feeling great about that.
If the opening of my post didn't clue you in, I have been struggling with anxiety. Though this was the first time the hospital smell triggered a panic attack, I have found that too many doctors appointments back to back and basically any weird repetitive seizure-like movements from Miles triggers them as well. This is a new thing for me and I'm working hard to find natural nursing-friendly ways to combat the anxiety which include sleeping as much as possible, abstaining from caffeine (chocolate doesn't count), avoiding internet research and support groups, and a whole lot of self talk. I've had a number of really positive doctor appointments which have educated me on seizure types and dangers and I'm under the impression I can put my guard down a bit, but wow is that hard to do.
Meanwhile Miles is growing up. Cognitively he is developing perfectly and he is getting frustrated that his body is lagging. He is behind in his motor skills and has significant torticollis with his head leaning to the right all the time, BUT, he really wants to learn to sit up and is desperate to start eating real food (I mean desperate. The kid won't let you eat anything without trying with all his might to grab it and put it in his mouth.). I finally gave in much to my chagrin (can't he stay a baby forever??) and we started with carrots yesterday and it makes Miles ecstatic. He opens his mouth wide, grabs at the spoon and flaps his little arms and legs with all the joy you can imagine. And you know what? I'm flapping along right with him. People said it would happen and they were right; though his trials run deep, his milestones are truly that much sweeter and something as bland as carrots tastes like chocolate.
Perhaps it's the omnipresent hand sanitizer, or the perpetual use of cleaning products, or maybe it's truly just the recycled air stale with sickness and bleached with sanitation, but whatever it is after a wonderful couple of months away from Seattle Children's Hospital walking back in to that wall of smell hit me harder than if I had literally walked into a brick wall. My heart rate skyrocketed, my vision blurred with tears then white washed as the blood drained from my head, and it was suddenly hard to breathe. I did not want to breathe in that air. I couldn't.
And this was just a check up.
Today we went back to Seattle Children's Hospital to re-check Miles' kidneys. You likely recall, at birth they said his kidneys were teeming with cysts and diagnosed him with polycystic kidney disease. However, a couple months ago at Swedish (where we have been having most of our care these days), the nephrologists and radiologists were only able to find one cyst and we all thought we had seen a miracle. Unfortunately, today our miracle was proven false and our faith in doctors rocked. The radiologists at Children's found just as many cysts as they did last time and couldn't explain why Swedish would have seen something different. They kept pointing out that they are the leading Children's Hospital in the country for nephrology and that Swedish likely doesn't have the technology or experience to deal with infants... and they may be right, but seriously to go from innumerable cysts to one? We are frustrated, confused and disappointed... the dangers of optimism, I guess.
On a more positive note, last week we saw the cardiologist and got some pretty good news. Though Miles' heart isn't improving and that valve is still completely failed it turns out he actually may not need his second open heart surgery until he is five or six or possibly even later. The doctor said we should be prepared for him to need it when he's two but that most of their patients with this procedure actually go much longer until that second surgery is needed. This is the first time we heard this news and it was very welcome. Taking a toddler in for open heart surgery that can't be reasoned with sounds like an absolute nightmare. Furthermore Miles is growing astonishingly well. At 15 pounds and 26.5 inches at 5 months old he is now in the 25% for weight and over the 75% for height! Over the course of this last month, he was growing at a rate nearly double the average baby.
Last week we also saw the neurologist and we got some more good news there. Unless Miles is doing things we aren't catching, it looks like he still isn't having seizures. The longer Miles can go before his first seizure, statistically the better his chances are for a good developmental outcome. We are told time and time again to expect the seizures that they will start some day, but we are just hoping and praying for as much time seizure free as possible. Additionally, 50% of people with Tuberous Sclerosis are on the autism spectrum, but Miles isn't showing any signs of being on the spectrum; on the contrary he is extremely social. Until this appointment, I hadn't thought much of his excellent social skills because I know autism is often a degenerative disorder that hits a typical developing child in their toddler years. However, apparently, the type of autism associated with tuberous sclerosis is mostly linked with early onset autism that should be identifiable within the child's first year. So that gives us a lot of hope. Our research led us to believe the worst outcomes for TS kids were closely tied with infantile spasms and severe autism so we are feeling great about that.
If the opening of my post didn't clue you in, I have been struggling with anxiety. Though this was the first time the hospital smell triggered a panic attack, I have found that too many doctors appointments back to back and basically any weird repetitive seizure-like movements from Miles triggers them as well. This is a new thing for me and I'm working hard to find natural nursing-friendly ways to combat the anxiety which include sleeping as much as possible, abstaining from caffeine (chocolate doesn't count), avoiding internet research and support groups, and a whole lot of self talk. I've had a number of really positive doctor appointments which have educated me on seizure types and dangers and I'm under the impression I can put my guard down a bit, but wow is that hard to do.
Meanwhile Miles is growing up. Cognitively he is developing perfectly and he is getting frustrated that his body is lagging. He is behind in his motor skills and has significant torticollis with his head leaning to the right all the time, BUT, he really wants to learn to sit up and is desperate to start eating real food (I mean desperate. The kid won't let you eat anything without trying with all his might to grab it and put it in his mouth.). I finally gave in much to my chagrin (can't he stay a baby forever??) and we started with carrots yesterday and it makes Miles ecstatic. He opens his mouth wide, grabs at the spoon and flaps his little arms and legs with all the joy you can imagine. And you know what? I'm flapping along right with him. People said it would happen and they were right; though his trials run deep, his milestones are truly that much sweeter and something as bland as carrots tastes like chocolate.
Tuesday, November 1, 2016
Halloween 2016
You can say a lot about the challenges of having kids and they are all true, rarely exaggerated, and completely worth the five million buzz feed articles about it; but there is one thing that is truly 36.5 times better with kids, and it is holidays. Holidays are so much more fun when you have littles around and I can't tell you how happy we are to have the summer behind us and move on into the magic of the holidays.
We had a little party...
Grandma and Grandpa Jeff dressed up perfectly to complement our group costume.
The best part of this Halloween is we got to spend a lot of time with Grandma. Update on Miracle Miles coming soon after our big nephrology appointment tomorrow.
Here are some pictures from the Halloween season.
Pumpkin patch fun finding the perfect pumpkin and getting lost in the hay maze.
We had a little party...
Grandma and Grandpa Jeff dressed up perfectly to complement our group costume.
Miles was the cutest addition to the Toy Story crew making one very adorable LGM... Kai still wishes he would go back to outer space... or Pizza Planet...
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