Ainsley got sick with RSV. Had bloody secretions for days. Needed oxygen at night. Then the rest of us caught it just in time to mess up my Christmas preparations. Steve's been working like crazy (nothing new, but he was supposed to be done with this game last week) and then he got double ear infections so he's nearly useless (sorry honey but you know it's true). It's been BUSY. But we are hosting Christmas dinner for 20 tomorrow so there is lots to do. Maybe like us you too need a little help in the cheer department? I thought I'd share our holiday drink recipes just in case. It's my little gift to you.
Have a very Merry Christmas everyone!!!
*Click on image to enlarge. Don't they look yummy? I hope I'll have time to try at least 1 tomorrow.
It's the busiest month of the year. I don't know about you but I have a love/hate relationship with December. As the years go by and the responsibilities increase it becomes harder to enjoy all the Christmas preparations. Last night I asked the kids what their favorite part of Christmas is. Evie and Adrian both said that the best part of the holiday is getting together with family. They especially like to spend time with their cousins. Yay! For a minute I thought that meant they didn't care so much about all the other stuff but after quick consideration they decided they "lovvvve" all the decorations and traditions too.
Since we moved this year we have to "re-invent" Christmas and decide where everything goes and what to do. It feels a little funny. Since it's a bit of a trek from Redmond to Seattle we aren't sure if we will continue some of our traditions. We used to try to make it to Madrona beach for the Christmas Ships but since we are no longer living there, that is likely not to happen, though shhh, don't tell the kids the ships go to Kirkland too. This year we got a letter that Santa isn't going to be at the Macy's downtown this year, although it turns out they just hired a different photographer. The kids LOVED to go there, and see the train set in the window. It's fun to mail our letters to Santa there and help raise money for Make a Wish, click here to go to Macy's interactive Santa letter writer. We'll see about that one. And I'm not sure if we'll make it to Candy Cane Lane . I know the kids would love to do everything and then some but I am hoping to retire some of our traditions and keep things simpler.
Steve's company's game is in the final days of production of their game, so he's been working around the clock. He was able to take a few hours off Saturday and Sunday so we could do a couple things. Darcy LaBelle, our friend and real estate agent, has an annual Breakfast With Santa. It was so much fun and was so well done as is everything she does. If you are in the Seattle area and in need of an agent I highly recommend her. And you never know, you might just snag yourself an invitation to next year's breakfast.
Pancakes and Sausage, and Donuts.
Peppermints, Hot Cocoa, Orange Juice, Hot Coffee with Bailey's, Egg Nog.
Orange Muffins, Blitzenberry Yogurt, Pastries.
Coffee Cake, Peanut Brittle, Croissants and Danishes.
Santa, a secret peak at Santa's List, and Reindeer Grain and Candy Canes.
Just down the road from our house is Red-Wood Tree Farm. A destination place to cut your own tree.
Or just buy it. Our tree's not trimmed yet but at least it's in the house.
It was B E A U T I F U L!
It's not so easy to shop for trees with a wheel chair. But I think Ainsley enjoyed herself even if she did have to be "parked" in the isles.
At least I didn't lose track of her like I did this one. He has a thing every year about hiding among the trees. Isn't he too old for that yet?
Though if you need a large tree you'll probably have to buy it off the lot. It's hard to tell but most of these trees are in the 4-5 ft range. This place takes their trees seriously. Each of the trees on the lot is in it's own bucket of water after being freshly cut. I'm hoping it will make for a long lasting tree.
And then they put it in the "jiggler" and shake all the dead needles off. I'd never seen that before.
This is our tree this year. A little bushy but it's quite nice, if only we can get Steve home so we can trim it as a family because I know the kids would NOT do it without their dad.
Only 20 more days left. We're off to a pretty good start. Each day the kids turn over a drawer of the Advent picture tree (when all the drawers are turned over it makes a picture). Inside the drawers are slips of paper with an activity. This year some days just have candy. I'm trying my hardest to keep on track so we aren't wrapping presents until 4am on Christmas Eve like we usually do. At least in this house I have access to the wrapping paper and perhaps a place to hide gifts. The good thing about my Advent calendar is I can take some things out if it turns out there won't be time and replace it with candy. Shhh, don't tell the kids. They might be getting a lot of candy this year.
Whatever fills your Decembers I wish you peace and happiness.
Ainsley's had a loose tooth. I was a little worried about how we were going to get it out (some parents have SN kids teeth pulled to avoid swallowing it) but it has been loose for nearly a year and I could tell it wasn't quite ready to come out.
Then last week the kids were goofing around and Ainsley slipped on the hardwood floors and bumped her mouth. I was summoned to the hallway due to blood. The kids thought she cut herself but actually she'd bumped her tooth. Luckily I was able to fish it out of her mouth and all was fine.
I'm just a little upset that my baby is loosing her baby teeth. Where do the years go?
Evie and Adrian were later than most kids to loose teeth. Which the dentist tells me is good, and usually means straighter teeth. Hopefully losing them this early won't mean her teeth will be crowded.
I will miss her beautiful smile. Baby teeth are cute. Adult teeth go through a period of looking awkward for a bit. Not to mention the gaps while we wait for the teeth to come in. Hopefully what comes in will look just as cute eventually.
Luckily the tooth wasn't swallowed. Ainsley was rather confused about what happened.
Remember that feeling of your tongue in the empty space?
My little yogini placing the tooth under her pillow.
The tooth fairy brought her a tooth fairy doll and $2 in quarters.
Ainsley's new toothless smile. Still awfully cute!
Wow, that was fast! Our pulmonologist, unbeknownst to me, rushed the results of the sleep study Ainsley had on Nov. 6th. Part of that included reviewing the results with a sleep doctor. I guess he's the man to know if you need something. He called me 3 days later with the results. It was supposed to take 3 weeks.
To review: Ainsley has Obstructive Sleep Apnea, or at least she would have if she didn't have a trach. I knew this even prior to the sleep study because even though we can put a cap on her trach while she is awake, if she falls asleep she starts to breathe heavily and will wake up 20-30 minutes later because she can't breathe properly. A sleep study is when they attach wires and special equipment to monitor the patient's quality of sleep. All the wires and sensors give them information about what the body is doing.
Ideally a child should have no more than 2-3 sleep disturbances an hour. A child with enlarged tonsils, if they were found to have 5 disturbances, would get a tonsillectomy. So hold onto your seats. Without the CPAP Ainsley had 38.8 sleep disturbances per hour. How is that possible? I'm not exactly sure because she did sleep. It doesn't mean she was awake half the hour. But I think there can be various disturbances happening at once, chest retractions, leg movements, and brain activity showing interruption to the sleep. I was a little surprised at how high the number was. But I knew that the results would be "bad".
The main reasons we did the sleep study were to find out "how bad" her OSA and to see if CPAP would help. And that is the second part of the results. I knew the pressure at home was inadequate for her to sleep, due to my trials. At the sleep study they see how she did at a given pressure and if it wasn't enough they would increase it and repeat that process multiple times until they found the right pressure setting. What they found is that a pressure setting in the 7-9 range got her into the 2-3 disturbances per hour range.
Our pulmonologist said that a setting of 10 is as high as they would generally go for a child. Based on her results were, measuring CO2 and O2 levels, BiPap was never needed. So it was effective. There was a chance that the CPAP would not alleviate the obstruction, and it wouldn't even be an option. What is clear is that she REALLY needs the CPAP. I knew that already but it is a little sobering to hear the numbers.
If we were to move forward with removing her trach and using CPAP for the OSA she would have to be able to wear a full face mask every single night for the whole night, maybe for the rest of her life. Even when she is sick. Probably especially when she is sick. Right now because she has the trach she sleeps beautifully and comfortably all night. Of course there is a chance that removing the trach might improve the OSA some without having that tube in the middle of her airway. But we can't count on it. In fact we have tried taking the trach out to see and though she can go a little longer she still obstructs in the same way. I did this because I knew she was fine during the day and I just couldn't put her through the CPAP trials last year without knowing that she really needed it.
In order to decannulate we would just have to be sure, really sure, that she could do it and it is worth it. And that I'm not too sure about. So our doctor approved plan is to wait until spring without doing any more CPAP at home. We are still waiting on Medicaid preauthorization before we can schedule our trip to Cincinnati (Our primary insurance doesn't require preauthorization.). It may be that they have different ideas, like surgery but we won't know until they've seen her and reviewed her data.
How do I feel about all this? Surprisingly good. Over the years I've come to accept our situation for what it is. If I didn't I would be suffering a lot of emotional pain as I did the first several years of Ainsley's life. All parents want the best for their children. We naturally want to fix things for them and relieve their suffering. Unfortunately there are situations when this isn't possible and not just for kids with special needs or medical issues. Parenting is a great challenge. Luckily it is also a great joy.
It even makes it worth the crappy night's sleep I got! And it nearly didn't happen, so that makes it that much more of a relief. Despite keeping Ainsley home from school and limiting our exposures by keeping her home she got a low temperature this week for no apparent reason (no real sickness in the family, she'd not been sick and limited exposures) and I thought we might have to reschedule. Her throat was red so I took her in to the pediatrician and they checked her tonsils, which though quite red, were not as bad as they looked to me. They did a throat and trach culture which we later found were negative for nasties. She had fluid in her ear, but that's typical for her. These sleep studies are booked out 6 months so you really don't want to reschedule. Luck was on our side and though her temp came back Sunday afternoon it was still under 100. and her breathing and sats seemed normal so it was okay to go. Looking for that brief moment of perfect health to coincide with a procedure, test or surgery is like waiting for a blue moon.
We did a lot of prep to ensure that this sleep study went well and that she would wear the CPAP so they could evaluate whether it's a legitimate option for her.
During the previous week or so, when she was able to wear her cap again, we brought out the machine and got her used to wearing the mask, working up to sleeping with it on. We tapes some wires on her face so she could see what it would be like. Children's also sent along this presentation that showed pictures of a child having a sleep study. I think that was very helpful and went a long way toward making this a less frightening experience for Ainsley. During the week I kept telling her we would be going and why. We reviewed the pictures again right before leaving for the hospital. It really helped.
You'd think we were leaving for a week. It's so great to be so loved!
She was pretty happy to be going. Then when she saw the tech in her scrubs and the room that looked still a bit like a hospital room, she was more somber.
It was almost like going to stay at a hotel. Okay not quite.
She got to watch Tinkerbell on X-Box while she was hooked up. I was too busy completing pages of paperwork and answering questions to get pictures until it was done.
The stuff they use.
Here she is all done. There were wires stuck all over her head with sticky putty, on her cheeks and chin, chest, arms, legs, back. In addition there is a pulse oximeter on her finger and a nasal prong that measures airflow at the nose and mouth. Then they wrapped her head all up with gauze to keep it in place which was smart though perhaps uncomfortable. Can you believe how many wires there are?! All this information is sent to a tech room down the hall, and recorded by a computer. They have a camera that can see in the dark, and they can hear everything in the room. She is fully monitored on every level but since the equipment was in another room, I really don't know the specifics of how she did.
She was tired so after she was wired she was ready to sleep. The bed was large enough that I could get in with her and hold her hand. That helped. As you can imagine she didn't love all these wires. She only cried a little while they were put on. But then she fell asleep fairly easily. The bed is about as comfortable as a hospital bed.
Things went about how I expected. With the cap on her trach she has obstructive sleep apnea, and I knew this from many home trials over the past 3 years. At this point it is the primary reason that she still has the trach. After 20-30 minutes she started to breathe heavily, and her chest would heave trying to get enough breath (retractions), she would rouse and breathe better. Then she would fall back asleep right away and the process would start over. They wanted to let that continue so they could gather test data. I think she understood why she was there and kept the cap on for a full two hours, which was what they wanted. At home she would just yank it off and throw it.
After the 2 hours, they put took the nasal prong out and put the CPAP mask on to start the CPAP portion of the test. I wasn't able to get pictures, but this is an old picture so you can see what the mask looks like.
After all that fighting to get her a full face mask last year, I was a little annoyed to hear from the tech that it is typical that people who mouth breathe need a full face mask, as if that was common knowledge.
Here is where they keep some of the equipment.
Last winter she'd been able to sleep a whole nap with the CPAP(capped). This week it actually didn't help her, she struggled to breathe and woke up and I had to remove the cap. So I had a brief panic attack thinking that the sleep study would be done in vain. But after some research I found they'd put her on the lowest setting but they would be able to go much higher during the study. During the sleep study they kept a close eye and ear on her and each time she struggled they would increase the CPAP pressure. I know at one point she was up to 7 (and only on 4.0 at home) although they can't tell me the final results, I don't believe she ever got to the point of needing BiPap. She was able to keep the mask on until 6 am when she signed to me "off". It was 6 minutes until the study was supposed to be over anyway so we took the mask off and boy was she happy! Though it took awhile longer to disconnect everything.
She was so happy and gave me lots of hugs. When we got home she was so happy to see her Dad, brother and sister who were getting ready for school.
It was a successful study, but a really awful night's sleep. I held her hand the whole time and she woke me 20 times. We're exhausted. I think the stress caused her to spike a fever.
So now she is sleeping on the sofa. It is so nice to see her sleeping peacefully. We'll get the goop out of her hair later. After a few weeks we should have the data. In December we have an appointment with her Pulmonologist to discuss our next steps. It's hard to think of making her sleep with the mask on for the rest of her life, and I'm really not sure loosing the trach is worth it. In addition her craniofacial team wants to see her after the sleep study. They have given the okay to schedule frontalis sling surgery and likely we will discuss her under bite and how that might be affecting her sleep. So these are some of the pots I've been watching and stirring. That and we are planning a trip to Cincinnati, likely in the spring to get a second opinion about her airway. I think in some ways this is a relief to our ENT who doesn't want to make a wrong decision.
Now we just wait and weigh our options which are:
Do nothing and keep the trach as long as needed.
Work toward the goal of taking the trach out which means using CPAP for sleeping.
I hope you all had a great Halloween! We sure did. Since we moved this year we weren't sure what to expect. The kids had a great time! Their new school has Halloween parties in the classrooms, and then they have an all school assembly where each grade performs a Halloween song. I decided to take Ainsley. It was so much fun to see hundreds of kids in costumes! I was really surprised at the variety and creativity.
Adrian: Obe Wan Kenobi (Star Wars)
Ainsley: The Queen of Cute (it was fun to make her chair into a throne wish you could see it better)
I was a little sad that they didn't want to do a joint theme this year but I'll get over it.
Thanks to my sister Sheryl who is training to be able to care for Ainsley, Friday Steve and I were able to go out. In 20 years this was the first Halloween party we'd been to together (other than the kid party we hosted). At one point in my life I wanted to be a makeup artist. Pretty funny, and maybe a little surprising. I made Steve's black eye. I was pretty happy with how my "Dark Faerie" makeup turned out (you might have to zoom to see it.).
We carved pumpkins and it was nice that the kids could safely work on their own. Ainsley joined in the fun, at first reluctantly touching the goo, but then she got into it and kept scooping her goo back into her pumpkin from the bowl over and over. It was very cute.
We had fun figuring out how to arrange our outdoor decorations. We were sad to loose our porch and were not sure what we were going to do but it turned out that with a little creativity this house is even better for decorating.
We setup the graveyard on the left after you pass through the arch.We added a fence this year which was very cool.
I love the bones in the leaves.
And a spotlight on the cross shined up onto the stone wall.
On the right side was a ghost in the tree.
We put a skull in the fountain. A cool effect, I thought.
We setup the crows, bats and owls in the covered area by the door.
As well as the giant spider.
Steve always plays spooky music so it really is an experience. Now we just have to work on getting more trick-or-treaters! (16 this year)
It was spooky outside, but warm and cozy inside. I was plenty happy to stay in and pass out chocolate eyeballs to the kids, while Steve took the kids out around the neighborhood. I hope you all had a wonderful Halloween!
We finished soccer this weekend and are relieved to be through a busy October. Ainsley is going in for a sleep study on Sunday so for now all my energy, what little I have left, is focused on getting her to wear CPAP with her cap while she sleeps so we get good test data for making medical decisions. Even when it looks like there is a lot of fun happening in our life we always have lots of pots on the back burners that I am constantly watching and stirring. I'll tell more when there is more to tell.
I am a very happy ten year old. I have learned to explore and navigate this world in my own special way. I've been through more in my short time than most people ever will in their entire life but that doesn't get me down. If I like you I just might flash you a smile that will melt your heart.
I am Ainsley's mom and the author of this blog. I am also mom to Ainsley's big sister Evie and brother Adrian. Normal life seemed busy and challenging enough before Ainsley came around in 2006. Managing the care of a medically complex special needs child is something I never imaged yet together as a family somehow we do and life is good.
Now days it seems everyone has a blog so perhaps sharing personal details of your life over the Internet no longer needs explanation, yet I will. Ainsley's blog was created in March 2008 in preparation for a medical trip to Cincinnati, OH. At that time many families like ours used services like CaringBridge to help friends and families stay up to date on the status child's health. Instead we chose the blog format and are so glad we did. In addition to being a way to share information with our friends and family it has served as a sort of diary of our experiences. There are many times that I refer back to it for information about a surgery or procedure, or forgotten details about something that happened or to just to simply find a date. Over the years I've had parents contact me to say that the blog has been helpful to them in one way or another and that means a lot to me. Like me, many parents of medically complex kids are looking for information on how best to help their child, especially in the early years. Sharing our stories helps.