A Tooth For the Tooth Fairy

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!

Have a Happy Thanksgiving Everyone!

Sleep Study Results Are In

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.

Sleep Study, Check!

It feels GREAT to check this one off my list!!!

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.
• A cricoid split or other airway surgery, which carries risks.

Hopefully over the coming months we'll be able to make some big decisions. For now I'm going to take a nap. And try not to obsess about it. Life still has to be lived.

Halloween 2011

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)

Evie: BumbleBee

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.

Ainsley, My Baby, Is 5!

What an eventful week. Sunday was Ainsley's 5th birthday party. About 30 of us, family and close friends, gathered at our house to celebrate. The past 5 years have been full of joy and tears. Ainsley is loved beyond all measure but it would be a lie to say these 5 years have been easy. They certainly haven't been easy on her. Sometimes if I think about the things she's been through it makes my heart ache and my eyes burn and sting. She SO deserved to have a big party. She is so easily pleased it is tempting not to make a fuss. But in our family we've been known to do some pretty fancy parties so we decided it was time that Ainsley had a special party and so a special party is what she got.  

Since it is October, my favorite month of the year, we had an owl and fall theme. I bought the owl graphics from AndersRuff, (click the link to drool over the most amazing parties you've ever seen) thinking that would save a lot of time, but in fact it fueled our creative demons. I about died when at 1am the night before I didn't have enough moss to finish the last side of my box (so I had to wash and dry more and bring out the hot glue the day of the party when I had plenty else to do), I was cursing my oldest daughter for suggesting we make an owl nest as a bowl for the party favors (now I have a whole new appreciation for the talent of birds), and if you'd seen the house an hour before the party you'd be pretty shocked it came together. But it did. Most importantly Ainsley had a blast. The other kids played Calico Critters with her, which is her favorite thing to do. She loved all the people and the fuss. She was even able to open the gifts herself and it was so wonderfully like any other kids' birthday.

There is no rest for the weary. The following day was her IEP. I'm glad to say it went really well. This IEP will last until 10/2012 which will be Ainsley's Kindergarten year. Her teacher had nothing but wonderful things to say about Ainsley: that she is very social, loves to participate in every way she can, and has a great attention span.  She's just the kind of kid they love to have in class. She is impressed with her abilities says Ainsley is one of the top kids in her class despite her limitations. She's higher functioning than many of the kids in the higher functioning preschool class (which we will be trying out to see how she does very soon). Of course we are so proud!

Then on the 18th, her real birthday, I took her to Farrel McWhirter Park to see the farm animals. It was the most beautiful October day you've ever seen. The light was gorgeous. In the sun it was warm so at first the animals were hiding but eventually they came out. We saw chicken, a turkey, a cow, ponies, a rooster, goats, sheep, a little pig and the biggest big you've ever seen! It's a very quiet, peaceful place. We had a picnic. Then we played in the leaves. There was a huge field and smack in the middle was the biggest maple tree you've ever seen and it had dropped its leaves everywhere. Ainsley still cannot stand but I was able to help walk her through the leaves and she got to feel them crunch underfoot for the first time. We were there just for her, with all the time in the world to linger. She bent over and picked up the leaves to inspect them, smell them and then throw them up in the air. She had so much fun! It was really wonderful! A day I won't forget. 

Then yesterday was Steve and my's 15 year wedding anniversary. We decided to go to the Matador. A restaurant and tequila bar in downtown Redmond. My sister Sheryl came over to watch all three kids. She has been doing trach training so she can provide respite (paid for by the state). She is the first person other than our nurses to care for Ainsley.  Steve and I can count the number of times we've been out without the kids in the last 5 years on one hand, usually to someones wedding. It's amazing when you consider the very high divorce rate for parents of kids with special needs that we've managed to stick together. So it was a real treat for us to go out. The restaurant has a great atmosphere and I could almost imagine we were on our honeymoon in Spain, 15 years ago. Just for fun I wore my wedding jewelry, a garnet and marcasite choker (I don't know how my poor baby can wear a trach tie around her neck I was so glad to get it off by the end of the night) and put in my contacts for the first time in several years.

It's funny but I think the only pictures I ever have of Steve and I are taken on our anniversary. 

Outside the Matador.

At our table. The food was delicious!!! Loved the giant mirrors and all the ironwork.

The bar and the three stain glass pieces were incredible!

We had a great time! We didn't have the Jose Cuervo 250th anniversary tequila. At $300 all I could say is WOW, I hope that was for a bottle but I think it's a shot. I got plenty of more affordable drinks.

And when we got home.....

...it was back to reality. Yes she was awake. She cracks me up!

It's been a fun, but tiring week. I'm hoping for a bit of a lull before Halloween. Of course we have soccer. LOL. Have a great weekend everyone!

The Countdown to 5!!!

Sorry for disappearing there for a bit. If you recall Ainsley was sick again in September. A trach culture showed she'd had the flu. So likely that's why I was sick for so long. And she also had strep pneumonia bacteria. So though she didn't actually have pneumonia, it could have gone there. After 2 weeks of antibiotics she's doing much better.

What else have we been up to?.....

Lots and lots and LOTS of SOCCER.

Ah, that smile! Ainsley seems pretty happy about it (soccer) for the most part, even being drug to a field 5 days a week she doesn't complain (unlike me). Some days I put her in her walker, and it's tough wheeling it through the grass so it's an extra good work out. I bought her a soccer ball as an early birthday present and she tries to kick it around. You should see the looks we get at the soccer field.

***

Remember the swing set project?

We discovered that for an extra $150 you can have the truck come and blow the chips in. Loading 12 cubic yards of wood chips would have been a HUGE job so we were thrilled to have them do it. Unfortunately at $750 that ate up our garage sale funds. Yikes! Hopefully this is a one time expense. So much for our intention to use the funds to finish the play house.

Isn't this cool? An hour or so later it was full and DONE. I like DONE.

Unfortunately....

After going in and out the side door (leaving it ajar) several times Ainsley was curious, so I brought her outside to see, even though she was sick. Thank goodness! Not realizing that the second lock was locked I shut the door and LOCKED US OUT. That was quite a close call and very lucky. Locking your trached child in the house by herself. THAT would have been scary! I guess I'd break the window. Luckily I had the phone outside and was able to call Steve and in 10 minutes he was home.  Hooray! Living in Redmond pays off.

When the kids got home they tried out the swings.  With the swing set rotated in it's new position Ainsley's tire swing now fits at the end. After a year and a bit she can finally use it.

 She loves it! I'm thrilled she can now swing with her brother and sister.

 

When I was a kid I LOVED to swing!  Nothing is as great as getting so high up that it feels like you will fall off. Evie takes after me.

Adrian can do it too now. Look how scared he is. Awesome!

Now kids can come over to our house to play without me worrying about them tracking in mud from the "wood chip swimming pool".

***

I've spent hours and hours in the yard weeding and pruning and barely made a dent. It's so depressing.

***

We made it to Salmon Days for curly fries, elephant ears and to watch the Salmon return to Issaquah Creek to spawn. It's a cyle of life that is amazing to see. Steve's been mixing sound there for the concerts for 27 years. (He was practically a kid.)

While we were there Ainsley met a kindred spirit. An adorable Daschund, Malibu, with a love of life. She isn't letting anything stop her! How cool is that?! Evie was fascinated that she also had a set of wheels to help her walk.

Ainsley loved meeting her. It was very sweet!

Little Missy is getting into stuff. And learning stuff. Boy oh boy is it a little scary. And impressive.

 Have I mentioned Ainsley likes to play with water? I allow it because it's good for her to stand as much as possible. Wow was I suprised to see that she managed to get out the doll bathtub from under the sink. And FILL it. Without spilling much water.......this time.

See how good this is for strengthening her ankles? Tip toes? No problem!

She does like to line things up. I wish I could talk to her and find out what she was thinking here.

She's helping hersef to bananas.

During a tube feeding she signed eat. So I told her to go get a cup and straw (we were using formula). She crawled to the kitchen, got all three pieces and proudly crawled with them back down the hallway. I was SO proud!

She has been trying her hand at using the remote control. Successfully I might add!

She's even been putting DVD's in by herself. Scary. Very scary.

Then there was the day she got herself up into the office chair by herself. No small feat considering it swivels. I think she was planning to use the computer!!!

She's been using her walker more and more and was even able to navigate herself from he driveway through the two parked cars to the door. Her legs are getting strong. Hopefully the balance will come.

Now for the biggest news of all....

On the 4th Ainsley was able to take a few steps for the first time with me holding her arm. It's still a new skill but it's progress and I'll take it! Afterward we walked down the hall and she used the wall for support and Evie snapped pictures (Steve was at work). I can almost imagine a day when I can walk with her hand in hand.

We are engrossed in party planning. Ainsley turns 5 next week on the 18th. We scaled back our plans and are not calling it a house warming or anniversary celebration (15 years on the 19th) in addition to her birthday like I'd said on the blog a few weeks ago because Steve is super busy due to his game deadline. We've invited family and the friends who care most about our beautiful amazing girl. It's been an extraordinary 5 years. Full of tears and joy! I'm a little emotional at the thought. Anyhow, the party is at 1:00 on Sunday. Anyone who wants to come give Ainsley their love is welcome. We just didn't have the energy to make it as big as it would have been. If you'd like to be added to the guest list just e-mail me at ainsleyblog@comcast.net . Thanks to all who've offered their support over these 5 years. We love you!