Feb 28, 2014

Airway Appointment Results & Other Happenings

We recouped over the weekend and thankfully by Monday Ainsley was well enough to go back to school because there was a lot going on this week.

Last week we got the word that Adrian was being offered a spot at the arts focused choice school that Evie attends. It would have been an easy decision except that Evie threw a wrench in things by declaring (after Adrian was offered the spot) that she didn't want to go there anymore and wanted to go back to the regular middle school. Had we known we'd have never applied for him to get in and we'd have probably happily sent them both off to the regular school. But that wasn't the way it went down and since he did get in it made the decision very difficult because either way someone wasn't going to be happy. There is no way I'd split them up.  The mornings are challenging enough without having to be in two places at the same time (carpool and the bus stop would be at the same time). Not to mention that Adrian is so excited to be back at the same school with Evie for a year.

Assignments to this school are made by lottery and because there are only 33 incoming 6th grade spots and hundreds of applicants that means we were super lucky that Adrian got a good lottery number. But it's not all good. This school requires a 25 hour per year (per child) parental volunteer commitment (even though it is public school). It is 11 miles away in the next town over and there is no bus. That means with two children our carpool driving would be doubled (especially problematic if Ainsley is home sick from school). There are other factors as well: social environment(low boy to girl ratio, student body of under 100 compared to 700), academics, homework load, friendships etc. but I won't go into it in detail.

Monday Adrian was able attend a full day tour. When I picked up the carpool kids at 2:00 I could tell he loved it. The whole way home all the kids talked about what they like or don't like about the school. As tempted as I was to make my life easier by sending Evie and Adrian to the regular local school rather than sign up for a 3 year commitment, that is what we did after carefully considering all the pros and cons, up, down backward and forward. This was one of the harder decisions Steve and I have ever had to make. Wednesday at 3:00pm was the deadline to turn in our acceptance letter and the check (a $225 contribution in lieu of fund-raisers is also required), so it's now officially a done deal that both kids will attend there next year. (Thanks Mel and Lynn for all your input!)

I don't think I've had a chance to say that we are refinancing our mortgage to take advantage of a lower interest rates. It's been a bit of a pain but worth it because in the end because it lowers our payment by about $200.  Monday we had to urgently sign all the papers because Steve left Tuesday morning for a business trip to California. It's tough to do everything without him, but it's still much preferable compared to so many years having him gone all the time with his previous jobs.  Having reasonable work-life balance is fantastic! I think we are all so much happier as individuals and as a family.

Tuesday I was surprised to find myself having serious anxiety. I think it was PTSD from the early years with Ainsley. We had an ENT appointment in the afternoon. This one wasn't going to be a big deal, but it felt like it did in the old days, as if our entire lives hung in the balance depending on what the doctors had to say. With time comes perspective and knowledge. Thankfully.  The emotional toll of those early years was nearly unbearable and each disappointing appointment would crush our hopes as we knew we'd be waiting another 6-12 months before (hopefully but in reality, not) we might get the good news we so longed to hear, that the trach could come out. By now I know that there is no easy route and there will be no miracles for Ainsley.

The purpose of this visit was to view go down the nose with the endoscope to view Ainsley's airway. We wanted to see how her airway looked compared to a few months ago when she was on Botox. Unfortunately she cried quite a lot making it hard to see and their recorder malfunctioned so I had recorded it with my phone. I'm posting it here so you can see. Overall we've concluded that the Botox gives her about a 10% improvement and we agreed that it's probably not enough to warrant continuing 3-4 times a year, since it has to be done in the OR under anesthesia.

The doctor thinks that her neuromusular condition (essentially cerebellar hypoplasia) causes the vocal cord opening muscles to open weakly and close too forcefully. It's hard to tell what's going on exactly. Her arytenoids are bulkier than normal. Regardless of what is what and why, the bottom line is that she caps pretty well, but doesn't have a perfect airway.  He did for the first time say that he thinks she is probably okay to decannulate during the day. The obstacle is Obstructive Sleep Apnea.  The trach treats that condition beautifully. She sleeps great. Without the trach she would need CPAP with a full face mask every night. We are going to see if that is an option depending on the results of the sleep study we have scheduled for June 22nd.  As her doctor says, it will then be a matter of "picking our poison" once we know how bad the OSA is and how high a pressure setting she would need to effectively "fix" it.  In other words it will be a difficult decision since both choices stink.

We've come a long way with this doctor. There was a time when I wasn't sure he remembered us from one visit to the next. Those days are gone. He spends time with us and I think he now genuinely cares. This time he made a special point to tell me what a great job I have done caring for our special girl and I could tell it was heartfelt which meant a lot. I really feel that he is doing his best to fully consider her case and give us our best options.

Ainsley was so funny and covered her face with a book I'd brought as a distraction. She's clever and awfully cute. She was a bit traumatized by the process so I promised her a treat. As soon as I told her we were done she was all big beautiful happy smiles again, in true Ainsley form. On our way out I stopped at the cafeteria and she picked a bag of Doritos. She ate them happily in the car on the way home while watching a video and wiped her hands on her shirt, making big yellow hand prints. It was so awesome! Traveling across the bridge at rush hour meant I was running late to pick up Evie and Adrian to take them to basketball and ballet. It's non-stop some days and very draining.

Unfortunately the following night Ainsley had some thick, colored secretions and started coughing. Although I did eventually clear it with saline and her sats improved, it was a rough night and she alarmed at least 10 times. After getting all the kids off to school today I was able to go back to sleep for a few hours since I am flying solo. I really ought to be in bed instead of blogging at 1:30am considering I have to make sure Evie gets up at 6am, but Ainsley is breathing rapidly, coughing, desatting and keeping me up with alarms again anyway. She now has a 103 fever even though her secretions are clear and I suspect that she may have picked something up during the scope and regardless will probably be unable to go to school tomorrow. The rest of the week is going to be just as busy so this is my only opportunity. Tomorrow the new nurse starts and whether we go to school or not I will be training her. Steve returns in the evening and then we are into the weekend, which is almost never an easy time to blog. Despite it being such a busy week I was able to work on Ainsley's activity chart, and am about 80% finished I will post more about that next week. I hope you have a good weekend. I know I'm looking forward to getting my husband back.

Feb 20, 2014

That Thing

That thing I never get done? Still not done. 

Friday the 7th I got the shock of my life when I discovered I had a voice mail from the school principal at 9pm (she left it at 5). Steve, the eternal optimist said it can't be all that bad. I, the pessimist realist knew that a message from the school principal from her cell phone on a Friday night saying a "situation that occurred with a staff member" had been dealt with and would never ever occur again was quite certainly a very bad thing. 

Thankfully the principal called me back an hour later, even though it was late, to let me know what happened so we didn't worry all weekend. That hour was torture as Ainsley was at home acting completely normal but being non-verbal there was absolutely no way to get any information from her. We realized just how vulnerable she is. What she had to tell us was that the gen-ed teacher reported that she saw Ainsley's school nurse (not our home nurse) strike her twice on the back for knocking over a tin of pencils during reading, much to the dismay of the entire class. She said the nurse would not be allowed to come back (clearly adults cannot strike children at school ever for any reason). This nurse loved Ainsley and had taken her to school since we moved to Redmond in 2011 and we trusted her. We were completely and utterly shocked. 

The nurse had appeared sick when she showed up for work that Thursday and Friday although she claimed she was sure it was an allergy attack. I asked her to be careful "just in case", but sure enough Ainsley came down sick a few days later with a runny nose, then a 102 fever. That lead to coughing which turned into tracheitis, causing blood in the secretions she coughed out of her trach for several days. Her eating was affected and I eventually had to tube feed nearly all her feedings because she lost weight despite the fact that we spent a lot of extra time helping her eat. In some ways her being too sick to go to school made us feel better about the fact that we had no nurse to take her to school.

After much consideration over that first weekend we decided to ask the nursing agency to try to find a new home care nurse to cover the other school days (instead of the staffing agency nurse from the school district). The nurse we brought in for Wednesdays and Saturdays a few weeks prior wasn't working out well (she had a bit of an attitude and struggled with some of the duties). We interviewed the new candidate on the 15th but then the agency had some trouble covering her existing cases and things were looking iffy until yesterday when I got the news that she will now be available for the days we need, starting the week after next. 

Our home nurse (who works only part time) agreed to help out in the interim. Bless her. Unfortunately with the amount of snot exchanged in our house we all have come down with runny noses at one point or another. Although Ainsley was starting to do better she now seems to have picked up another runny nose (as have I) and is snottier than ever. I'm hoping she'll recoup over the weekend and be able to return Monday.

With Mid-Winter break in the middle there it's been nearly 2 weeks since Ainsley's been to school!

It's not all been nursing drama and snot, we did have a birthday party for Evie and Valentine's Day. Remember I said I was going to cherish the days until she actually turned 13? Well that turned out to be easier said than done. Such is life when you have a special child in your life. "Things" happen. I just keep doing the best I can to enjoy the moments I can. But now I have a teenager to reminder me how fast the days go by. 

Click on this link to be directed to Evie's 13th Birthday Album. 

We love our birthday parties around here but I want to say that Evie had a great birthday this year even though it was simple. It was really nice, for a change.

As for "that thing" I hope we are all healthy by next week and I will have a chance to get to that thing just in time for a fresh start with a new nurse. We having nothing scheduled for the weekend and are relishing that! I hope you have a great weekend whatever you are up to. Next Tuesday we have a scope, so stay tuned for news about Ainsley's airway and our plans for next steps.

Feb 14, 2014

True Love

This Valentine's Day I find myself reflecting on true love. It is easy to love when life is easy. It is harder when things get hard. A simple though perhaps obvious fact. After 22 years together it is amazing how well Steve and I know each other. That is true love. When you know each others faults but love and stand by each other anyway.

XOXO. Still love you honey. (Glad you shaved the goatee, though.)

At this stage in my life Valentine's Day is just as much for celebrating the love I have for my children. I love all three of them so much! The love I have for Ainsley is special. As special as she is. Caring for such a special child is demanding. But like anything demanding the payoff is great.

Ainsley picked up a cold. Something that would be minor to the rest of us. But when Ainsley gets a cough she is miserable. The cannula hits the trachea and the result is often tracheitis. The irritation causes more coughing and starts a cycle of coughing that is difficult to break. Bloody trach snot splatter is not something to take out into public. So while Steve took Evie and Adrian bowling I am home giving Ainsley TLC.

I put her in her new heart jammies for a jammie day with style. Watching movies only helped a little. 

When things get like this Ainsley always regresses with eating. It's hard to eat while you cough.

True love is feeding your child through a tube because you know they need it even when you know that it will derail all the progress you've worked so hard for. 

Look at her beautiful smiling face even when she feels awful. It's pretty easy to love this girl with all my heart. Today I feel blessed even though this isn't my ideal way to spend Valentine's Day.

Later we will be celebrating with Chinese food (pizza for Adrian). 

We have treats. And will be watching Make Every Day Valentine's Day.

Ainsley wrote "her name" on cards for Evie and Adrian. She did that on all the cards for her classmates and was so proud! They are scratch-n-sniff. My favorite!

Hope your Valentine's Day is sweet!

Feb 7, 2014

The Thing That Never Gets Done

 I don't think I had a chance to show you my fortune cookie from dinner with my friends while in Arizona. I thought it was perfect for how I was feeling after my trip there to be with my friend Ann for her son Jack's funeral. We all got a fortune that was eerily apropos.

I'd been putting off making some medical decisions for Ainsley but I worked through that and scheduled multiple appointments with various specialties. It feels good to get that done. Our sleep study will be in June and I will let that guide our decision about decannulation with CPAP. We will see the ENT on 2/25 for the nasendoscopy and that will help us decide about whether to continue Botox injections. She'll see Craniofacial, Pulmonary, Endocrinology, Dermatology and the dentist within the following months. In addition I notified all her doctors via e-mail that she started eating orally. Some days and weeks her care really is nearly a job. I don't know how I would do it if I was working outside the home.

I felt the desire to do a detox/cleanse and picked this one.  For 3 days I drank nothing but juice and tea (and coffee which is cheating but I wasn't about to give up my coffee). I followed it up with 2 days of mostly vegetable soup. My friend Mel convinced me to try dry brushing. I did that followed by the epsom salt bath recommended by Dr. Oz (though not all 3 days). I got a pretty bad runny nose. I'd heard a detox can make you feel sick as your body is rid of toxins. No such luck. I was sick, and it lasted a week. Probably because I spent a day at school.

We had a new nurse start. She is working Wednesdays and 6 hours on Saturdays. This will allow me to have one day that I can take Evie and Adrian out without Ainsley (Wednesday they get out of school early) to run errands or spend time with them. Saturdays will allow both Steve and I to attend Adrian's sports games and spend a small amount of time with Evie and Adrian. Ainsley takes a lot of attention to care for. Rather than get by with the bare minimum of nursing I'm trying to add a bit more even though it is an intrusion into the family. Plus training a new nurse and getting used to their personality is stressful. I'm sticking it out, hoping the extra help will help us re-balance and better meet everyone in the family's needs. This includes ME. Often moms put their own needs last (and it's even worse for special needs and medically intensive moms)  which then causes resentment.  I'm done with that!  

Aside from not being able to start my juice cleanse I was happy to go to school with Ainsley. I love to see what she is up to during her time at school. I LOVE this new program, Starfall, the special ed teacher is using. The kids love it too. 

It was awesome to see Ainsley eating lunch in the lunchroom. She's still eating orally. 

She loves to "run around" during recess. Though I think she really wanted to play tether-ball. 

Here she is working during OT, picking up pompoms and identifying colors.

Though she comes home tired we have more to do. She has to finish her lunch (there isn't enough time because she is slow). Then we try to have her do "homework" before she gets some downtime with a video before dinner. It also takes her a long time to eat dinner. Often Evie or Adrian have ballet or sports to be at. And they have homework. So the evenings are busy even through we are a bit less pressured after dropping speech and hippotherapy.

We had conferences last week. I was a bit annoyed that Ainsley's Gen Ed teacher wanted me to set a goal of reading to her every night and also make up some other personal goal for her to work on. It nagged at me for days even though I tried not to let it bother me. I do read to Ainsley. I just can't always do it every day. I guess she doesn't realize that we already have way more stuff to work on than I have any hope of accomplishing. I read to her as much as I can but I felt like she thought I was making excuses. People that don't live this life have no idea what it's like and really can't get it. I really try not to let it get to me but it isn't always easy.

For Christmas I bought a bookshelf to organize her stuff to make a "home program" easier for all of us. I've been trying to create a chart for the past 6 months that makes it easy to keep track of what we need to do with her in the following areas:
  • Stretching/exercises
  • Walking/balance
  • Handwriting/Coloring
  • Academic: Colors, Letters, Numbers, Shapes, Reading/Stories
  • Cutting
  • Oral Motor/Speech
  • Communication Device
Unfortunately the hours between when the kids leave for school and the first one comes home go by very quickly. Every week I think this will be the week I get it done. Then it isn't.  One day at a time the time runs out. This week I did get my desk cleaned off and started re-organizing my binder and found all of Ainsley's papers with her goals, my ideas etc. So I'm setup in a good position and I'm going to reserve Monday 2/10 for this purpose. So there. 

Even though I beat myself up because the chart isn't done, we do still work on stuff, I'm just trying to optimize our time and energy (and get Steve and the kids to help). I've starting taping up her work on the bookshelf, which is so fun to see. I'm hoping it will encourage her to be proud of her work and make it fun. I bought her new crayons and markers with her Christmas money and put them out in front of the TV with paper and scissors so she has constant access. Here is some of her work.
Her drawing of spaghetti and meatballs. The Kumon workbooks are great.  

Here she is tracing. You can see how much time it takes. Ainsley's cerebellum malformation causes her to require more time for motor planning pretty much no matter what it is. I'm so proud of her, she's improved a lot!!! She can nearly do it independently.

She is also doing well eating independently when she likes the food (like daddy's blueberry pancakes). She's so proud of herself and it's AWESOME! We have also been reminding her to use her Frontalis Sling and she is using it more often to lift her lids higher. I was worried that the surgeon took too much eyelid during the tarsal switch and that her eye openings were left too small to open comfortably. I'd love to be wrong about that.

She can finish some more complex foods, like mugwort yakisoba, with a bit of prodding and extra time. She's come such a long way and fought so hard to eat orally!

Other goings on these past weeks.

Evie had 3 dance recitals: one for school, two for the dance studio on 2/25, 26 & 27. 

She looked great up on stage.

Adrian volunteered to be a 5th grade helper at Movie Night at the school. It's a fund raiser but a lot of fun too. This year's screening was of Despicable Me 2. 

He also had basketball, a major book report, and a science project. 

It turned out great in the end, but due to our busy schedules we had to do a ton of the work the night before. That meant I was busy helping him, way past bedtime. At least he did it. And he was happy and proud of the result. Neither Steve or I ever entered the science fair at school. This should give Adrian a 4 in science. This is just one example of a night when Ainsley just isn't going to get a bedtime story.

His project was showed how the distance of the light source affects the rainbow that a prism makes. 

A huge time suck has been this stupid table that I ordered after not finding anything at any of the local furniture stores. I ordered off the internet and after a bunch of hassles the table arrived damaged. A replacement was ordered and I experienced all the same problems as the first time, plus many conversations and e-mails with the company. Today the second table finally arrived and guess what?! It was damaged. AGAIN. 

It looked like it was gouged by a forklift. And yet they still tried to deliver it. It's so beyond frustrating. I don't have time for this crap. 

 Then there was the Superbowl. Did you hear Seattle won?! It's been kind of a big deal. Even though I don't generally watch sports on TV we had a little party which was fun. 

We have limited seating so I popped in and out and built this terrarium in between watching. 

I'm trying to finish some decorating. We're homebodies. I think it's important to feel comfortable in your home. For it to be a reflection of the person you are. Besides, it feels good to be surrounded by rooms you love. I'm not quite there, but nearly. I think it needs a piece of art on the wall next to the cubbies, but at least it doesn't look half finished anymore. (I'm tired of half finished.) I plan to find more interesting and meaningful objects for the cubes over the years. I'm so glad after years of wanting it but denying myself, I finally bought the cubby shelf. I love it!

This weekend is Evie's 13th birthday party and we are keeping it simple this year (her real birthday is, of course, on the 18th like Steve and all the kids).  Looking back I guess really this is the first time we haven't had a theme. As Evie got older she and I came up with ideas together and we fed off each other and overdid it a bit some years. This year it is a sleep over with pizza, a movie, candy, ice cream and store bought cupcakes. Easy peasy. What a relief. How amazing is it that I'm blogging instead of doing something crazy like making a paper mache' pinata. A look back at birthdays past. *

One: Zoo
Two: Teddy Bear Picnic
Three: Bugs and Butterflies
Four: Valentines
Five: Strawberry Shortcake
Six: Princess
Seven: Fairy Paperdoll
Eight: Harry Potter
Nine: American Girl
Ten: Rainforest
Eleven: Percy Jackson
Twelve: Red Carpet 

Have an awesome weekend! I intend to. Adrian made his first basket last weekend and I wasn't there because it was an early game and the nurse couldn't work. Hopefully he'll score tomorrow and I'll get to see. I plan to cherish my baby for another week before I officially have a TEENAGER! Gasp! I'm scared. Wish me luck.

*Clearly extravagant birthday parties are a luxury not a necessity but I feel compelled to say that a lot of the work happens after the kids go to bed or during school. Some people might consider a waste of time but the memories will last a lifetime.