Botox Round 2

Today Ainsley had a second round of Botox. The last injections were done in late April. We thought it helped her so we asked to do a 2nd round to be sure. The otolaryngologist injects the Botox into the muscles that close the vocal cords (which are different from the muscles that open them). The hope is that her vocal cords will be able to open but not close completely. In theory this leaves her airway somewhat open which helps her tolerate her cap more easily all day long, and hopefully allows her to breathe through her nose and mouth while she sleeps (she currently obstructs so we have to un-cap her for sleep so she can breathe through the trach).

The risk from this procedure, is aspiration and the potential to develop pneuomonia from it, or worse, lung disease. Last time we didn't see a huge improvement in her airway (like enough to not need her trach anymore) but did see a little. We felt that she ate better, removed her cap less often, had less difficulty breathing during exertion and crying, and could vocalize more easily. Thankfully there were no signs of aspiration, like a change in her trach secretions or the amount of suctioning. It wore off at the end of July. After seeing a perceived decline I contacted her doctors about repeating...it just takes awhile to get the appointments all lined up and then get on the OR schedule.

At the same time she did much better on her last swallow study in June and we've been working hard to transition her slowly to oral eating. My thinking is that if she can eat orally and maintain lung health that we may consider surgery: a partial vocal cordectomy, or vocal cord lateralization in the future.  After 5 years of wearing a cap off and on throughout the days with mixed results I believe she will need surgery to get rid of the trach, especially for sleep (unless she uses CPAP). Even then, without surgery, I think she would struggle to get by during difficult periods during the day, especially if she got sick with a cold or flu.

....Or we may just keep doing the Botox injections every few months (they wear off) and hope that eventually she grows so much that the obstructions she has don't impact her as much.

....It's also possible that the trach is really the safest and therefore best treatment for her.

So anything is possible right now.  We must try to have patience. Here are the images from today's laryngoscopy.

 

• Upper left...I was struck by how "swollen" it still appears. It's looked like this for years. It's amazing that she wears the cap most of the day. Dr. I thought that it isn't actually too badly swollen, but that her tongue pushes the epiglottis back and causes "scrunching" while she is under anesthesia. I noted the lingual tonsillar tissue. It would be nice if it weren't there. But the surgeon is afraid removing it might causing scarring. 
• Things look pretty open in the next image, not sure if that is clamped open, it looks like the vocal cords are nice and open.
• The 3rd, lower left image shows a small degree of stenosis and a bit of collapse where the tracheostomy tube goes into her trachea. But there is a pretty good amount of space around, so you can see how compared to the glottic area (VC), it's likely not a problem, since the "bottleneck" is above this area.
• The last image is the bronchi, which looks great. 

 

Tomorrow she goes back to school. The Botox will be in full effect 1-2 weeks from now. So we will watch her carefully. We have a visit with the doc on Nov. 12th. I'm hoping he will do a nasendoscopy and we will be able to see whether or not the Botox really opened things up much.  This is likely to be a long process. As I said....patience.

 

*****

 

While we were there today I ran into a friend. Her son attended the "birth to three" program at the same time as Ainsley. His condition was comparatively mild, no major medical stuff, just a bit delayed. When I ran into her in the years following he was doing quite well.  I was shocked to see her at the OR (operating room). She called out to me and the second I saw her face I knew everything was not "okay".  She said her son has a rare, terminal brain tumor. It breaks my heart!  She said she is looking for prayers so I don't think she'd mind that I share her son Victor's Facebook page: Victor's Victory. I'm not sure if I believe prayer can heal but I know for sure it can't hurt. The last thing she said to me is "Things really can get worse." and "Hug your babies tonight."  It is so true. Sometimes it feels a bit "Pollyanna" to say "Thing could always be worse.", but it is true. Whatever your circumstances, it is wise to be grateful for the good, for each of our lives hold good and bad. Don't wait until things get worse to appreciate the good things in your life!

The Beach

I hope my last post hasn't left anyone worried about me. Things are fine. Life is just busy. The days pass so quickly, that's all. One minute I had 3 little kids, and now I don't (Evie's nearly 13). We've done some great things as a family, but I've also been stressed. And it affects my ability to be the person(mom) I wish I was. That's the truth. This life isn't easy with all the extra concerns that come with having a medically complex child with special needs.

Last weekend I had the very good fortune to be on a trip to the beautiful Hotel Del Coronado (San Diego) with 3 friends who also walk this journey. We met on-line years ago. All 4 of our kids have trachs and g-tubes. Each is unique and we all have different circumstances. It was great to sit on the beach and share our victories and failings without judgement with others who truly truly "get it".  It is a weekend I will never forget. The only bad thing about the weekend was that it came to an end too soon. 

 The hotel is too large to fit in one picture (with a phone as your camera anyway).

 

 The view from the beach, just a portion of the entire thing.

 It felt so great to dig our toes in the sand.

 From left to right Sarah, Ann, Me and Christy.

 We came well prepared and the fun started right away.

 Ann (she's so amazing!) booked us a private bonfire with Smores the first night.

 

 The entire beach at night. The bright light in the center is our fire. Talk about private.

 My room.

 It's view. See the beach on the left in the distance?

We had a lots of laughs over this one, if only I could have panorama'ed myself into it.

A mid-day dose of caffeine was much needed.

When's the last time you saw a functioning jukebox in a restaurant? 

 LOVE!!!

 

 Sarah and Christy cracked me up as they attempted to get Facebook worthy photos. It was fun to watch them and the sun set at the same time.

Appropriately we were given the "queens" table for breakfast. A lady sitting next to us as she was leaving said, "It is a little difficult eating breakfast sitting next to nurses....I nearly faint when I get blood drawn...." I looked at her quizzically, like really? And replied, "We're just moms. Talking about our kids." Sheesh lady, be grateful you aren't living it! Some people!

 

 We did a little shopping. This place, Coronado Taste of Oils, had delicious oils and vinegars!

 At this adorable shop I found a book on crafting flowers out of paper, with patterns even, for Evie. It will keep her off the computer for hours. I know she's going to amaze me, she always does, with the things she'll make.



 We had a lovely dinner on the patio.

 The palm trees were lit up so beautifully though you can hardly tell in this photo.



 A panoramic shot of the beach.

 

 The last day while the other gals went for fro-yo I explored the hotel. I could tell they weren't interested in all the old stuff.

The elevator man. I think he's been working here a very long time.

 One of the shops had been moved temporarily into the ballroom so we got to go in.

 The amazing view, overlooking one of the pools, from it's windows.

 The crown chandeliers designed by the author of the Wizard of Oz during his time here at the hotel, when he wrote several books.

I LOVE old architecture. The people below hardly noticed this area above them where anyone could be watching.  There is such a sense of mystery in a place like this as you imagine the thousands of guests over the past 125 years, decade by decade. What stories these walls could tell.

 

There were a bunch of unique antique chairs placed throughout.

I had to wonder if perhaps Marilyn Monroe sat here with Arthur Miller years ago in this hidden spot on the stairway.

A bygone era, when even the mailboxes were pieces of art.

 The courtyard garden.

I don't even know what this is. Don't you love going somewhere that all the vegetation is different?!

I think this picture sums up the magic of this weekend. The beach is restorative. If you find yourself feeling a little blue, I highly recommend it as just the thing to pick your spirits up.

Pictures and the Passing of Time

Tomorrow it will have been 4 months since Steve started his new job. After years and years of him working extreme hours to meet deadlines it has been great to have him home in the evenings and weekends. His switching industries was the best thing we could ever do for our family and marriage.  Now that he's here and we are still so busy I wonder how I held it together for so long. There have been a few business trips but I have managed and it's far better than having him gone most of the time. We are catching up.  Life is getting better and now it is time for me to take some time for myself.

I decided to get back to scrapbooking since it's something I enjoy but the family will also benefit from. Eileen, a Creative Memories consultant runs a scrapbook studio in her home and every Tuesday she holds coffee crops from 9-2. I finally made it to one this Tuesday. It was great to be there. It gives me hope that someday I will have albums again. Before going digital in 2004 I had every single photo in an album. Since that day I have ONE incomplete album.  Sometimes we watch slideshows on our big screen TV so our pictures aren't completely unseen, but there are literally thousands and thousands of pictures that even I have never even looked at once. The reality is that I'm taking far more pictures than I can keep up with.

As Eileen says the journey of 1,000,000 photos starts with a single album. So I decided that I would create an A-Z album. When Ainsley was a baby a friend had shown me her family alphabet album that she'd made. I thought it was fabulous but honestly I was a little annoyed at her suggestion that I might do the same since at that time I was struggling just to make it through the days. Since then 5 years have passed so maybe now I could finally do something neat like this for my kids. How hard could it be? There are only 26 letters in the alphabet.  Right? Besides, I can justify the time spent since Ainsley is still learning the letters of the alphabet and it would be a fun teaching tool too. A perfect starting place, I thought.

Later in the week Evie and I picked the most adorable digital artwork. I planned my subject for each letter. Together Evie and I designed a couple sample layouts. But to really get started I need PICTURES.  And that's when it all grinds to a halt. I started viewing my photos (thankfully starting with years that are all fully edited). With roughly 10,000-15,000 photos per YEAR finding 26-75 photos is like looking for the proverbial needles in a haystack.

There are SO many photos. Don't get me wrong, I am grateful that I took them. It gives me the chance to look back and see that even during stressful days and ordinary days there was magic. Even if I couldn't see it or feel it at the time. My kids were and are BEAUTIFUL! So many memories I'd forgotten. To look back and see their little faces breaks my heart. They've grown up so fast! Life is busy for everyone. Balance is a challenge for everyone. But when you throw in a highly demanding job, a fixer-upper house, and a medically fragile special needs child....well then it's impossible. Really. There is no "balance".  It's more like extreme juggling.

 

And I see that on my tired face (in the few pictures that I'm in because usually I'm the photographer).  I see it on my kids faces as I recall how difficult those times were.  It's especially difficult to see the pictures of Ainsley and all that she's been through. There will be ordinary pictures and then all of a sudden pictures that no parent should have in their collection, like the heartbreaking one below that I found today. Sadly this is just one of hundreds of such photos. Having to comb through our photos is cathartic. And probably good for me even though it is a painful process.

The truth is that although I did the best I could under the circumstances, I really wanted to be a better mom. My pictures reveal that. But they also reveal that I did okay sometimes, maybe even more than sometimes.  And it validates my perspective of just how difficult it really has been. They say that parenting is the hardest job there is. Since there are so many ways to screw up I wonder if ANY parent EVER feels like they've done it well.

I also found this photo of a forgotten everyday moment. I love that my kids made me a crown and that I'm balancing it on my head while suctioning. In reality I was probably a little irritated and overwhelmed. This is one of  thousands of photos I probably don't need.  But I'm so glad to have it. It shows how perfectly imperfect our life is and will always remind me that I did the best I could. 

The Grass Is Greener

Do you often feel like the grass is always greener on the other side (of the fence)? I think it is human nature. At least I hope so because I often catch myself thinking that way.

During the school year summer sounds so lovely. I think I romanticize the idea of what it will be and forget about the cooking and cleaning and dream of the fun things I'll do. The reality of being home all day caring for 3 kids...it's not so much a "vacation".

As summer draws to a close I am usually ready for the kids to go back to school. Then when they do I think "How could I have forgotten how much work this is?!" Forms coming out my ears, the morning rush, packing up all Ainsley's special stuff to send her off with the nurses, homework, after school activities, squeezing in therapies and "at-home-therapies". Yes it is nice that when they are gone I have time to pick up, do laundry, errands, grocery shopping etc. Throw in e-mails to doctors and teachers etc....A miscellaneous project or two and the hours before the first kid comes home are gone but I like being able to get those things done without feeling like I'm ignoring the kids.

There is good and bad in both. Every lawn has it's dandelion and clover, it's just that it's harder to see from the other side of the fence.

My last two weeks have been like this......

I love my coffee. When I go to microwave my cold coffee and find yesterday's cold coffee well THAT is a sure sign that somethings not right. 

I realized after my last post that I probably can't show you too many pictures from the magazine photoshoot since the issue isn't due to come out until summer 2014 and I don't want to be a spoiler. When it does, I'll post official pictures. It was interesting to be a fly on the wall. Our house is pretty ideally designed to do something like this with a minimal disturbance (garage for storage, gate for entry, a bathroom near the garage away from the rest of the house, a covered area to keep their stuff dry if it rained which it did). I was really glad the kids weren't at home. Penny hated having them here so I couldn't let her outside. All in all it was a good experience, though a distraction for sure.

The crew needed access to my bathroom (which is in the laundry room) so when they finally left on the 9th it was major laundry catch up time for me. I sort on the floor, I don't know about you. I just didn't want them walking in on THIS. 

They used a lot of potted plants, and bought plants they never used, so I agreed to take them. It would be a shame to throw them away. Unfortunately I couldn't keep their pots so I had to buy my own. Since they paid us a rental fee I used some of that money (that I don't have yet) toward pots (I'm trying to look at it as free potted plants.). The local nursery had them for 30% off. Yay! These are what was left AFTER potting everything.

We realized after watching their set design that our yard could really use some pots with flowers. I don't have a ton of time for watering so I hope I don't regret it.

I repositioned the pots I already had and I think all the changes are a definite improvement.

After the potting work was done I cooked a late dinner outside. It might have been the one and only time all summer other than our 4th of July barbecue that I used the outdoor burners. It makes cooking more fun. I need to do it more often.

I was so excited that I actually got some green beans off my plants(this was the whole crop). My first seedlings died and these were planted late in the season so I thought I wouldn't get any.

Eating outside (in the dark) as a family was a nice way to finish off the summer.

We even lit candles. I don't know why I don't do that more often, they make an ordinary night special.

The crew hung lanterns off the pergola with wires and left us the wire. We already had these lanterns and I simply hung them with wire. They went from clutter on the countertop to a nice accent.

I had other end of season vegetables to use up. I had used some tomatoes to make turkey chili, and was thrilled when Ainsley finished her bowl! Later in the week I finished off the greens and we ate the last of our grapes and I've STILL got more tomatoes. (I highly recommend the black pots in a sunny location for tomatoes!)

Steve was on a 3 day business trip last week so I was on my own to try to prevent Evie from wearing this to school. We compromised but she did wear the short shorts with navy tights (for the one and only time, we agreed) with navy tights to de-emphasize the legs and with high tops intead of black boots. Should 12 year olds wear short shorts to school even with tights under them? Reminder to e-mail the school office.

 That night Evie washed her hair with olive oil and feigned ignorance and we got in our second fight in two days. She got to bed late (that always makes me mad) and then had to get up early to wash it out. In the process she woke me up at 5:30.

After being up at 6:15 the day before. I'm NOT a morning person. Yes, I know lots of you probably get up that early all the time. I hope you don't also stay up until 12-1 am regularly.

She is surely heading into her teenage years and my mother will finally get the last laugh. I've got it comin' to me.

I spent hours trying to repair our printer, cleaning the print head. Next step delete and reinstall drivers. After buying all the ink I just want it to work!

Ainsley came home from school with these broken blood vessels on her chest and we had no idea why. It is so frustrating at times, having a non-verbal child. There is no good way to ask the kind of questions that might give clues to what happened. Which makes me sad to think about. A few days later we think what happened was that she squeezed a ball tightly against her chest.  The girl is stronger than you'd think. The embroidery caused the pattern.

AND the wheelchair pin came out again. Completely this time. It was incredibly difficult to fix because with all the parts in place you can't see the hole the pin goes into, which doesn't line up because the frame is tweaked. Eventually I got it and foraged a part to replace the missing nut and hold it all together at least temporarily.

We did get a couple things done that have been on my wish list for the past 2 years.

The rusty basketball hoop got a coat of paint and it looks amazing.

And we got the garbage cans off the driveway. We'd planned to put down pavers but I just didn't want to wait any longer. It's crazy that it took us 2 1/2 years to do that.  It feels so great to get things done, no matter how small!

One of my nurses is on vacation and I attended school with Ainsley Monday. That was good because I was concerned that perhaps the work she was doing was above her (ie. a waste of her time). I'd considered hiring an educational consultant and have a few e-mails out. But after

 talking to the teachers I do think they have her interest at heart. It is a challenge though to meet these kids needs. All we can do is our best, knowing it won't be ideal. I'll be there 3 more full days during the next week so I think it will really help me figure things out. A good portion of the work needs to come from home. I just need to figure out how.

I've been e-mailing Ainsley's doctors and got a last minute appointment with her ENT. My nurse had car trouble so we went on our own. And it was great. He agreed to try the Botox again. I signed consent and got it scheduled for mid-October. We got a flu shot and Ainsley acted like it was the end of the world. Cried the whole 20 miles home and then some. Sheesh she's had milder reactions to surgeries.  On the positive side she ASKED to eat at the cafeteria (using that special Mommy/Ainsley special code of talking) and she really ATE. A few potatoes from soup, a couple pieces of shell pasta, a bit of cheese, and quite a lot of oyster crackers. I was SO proud of her!

In addition I purchase my PLANE ticket to California. I'm taking some mommy respite days for the first time EVER, meeting up with some other SN moms from around the country. I can't wait!