May 28, 2010

Too Much To Do & Finally A Hip Surgery Update

Sheesh! I guess I'm falling into a habit of posting on Fridays. I'll try to do better so I'm not posting these mega-posts. Life is so busy for us. Just caring for 3 kids is a job and then you throw in Ainsley's special needs and medical issues and you've got  a dilemma because not everything can get done. Things have fallen behind in many areas.
  • the yard is terrible our lawn is almost 100% weeds and the beds are infiltrated with grass and weeds
  • the house rarely gets fully cleaned, mopping and dusting rarely happen
  • the kids schoolwork (yes they have homework every night) doesn't always get reviewed just this week I found a letter from Evie's math teacher from November.
  • there is more junk accumulating than our storage areas can hold
  • the laundry piles up and sometimes my kids have to pull dirty clothes out of their hamper
  • I never order the medical supplies according to the schedule, which is what I should be doing right now since it's order week
  • our bills get paid when I find time and sometimes that means they are late
  • I have tons of paperwork that need to be organized (Ainsley's medical binder, the kids' school paperwork, receipts, bills etc) and now there is so much I don't want to do it
  • I haven't been to see a doctor in 10 years (other than obviously the OBGYN, okay okay and my endocrinologist while I was hyperthyroid)
  • we have more incomplete home improvement projects than you can imagine (our house turns 100 years old in 9 years) so I won't list them but on top of the current list is that our floors have deteriorated to the point that Ainsley twice has got a sliver entirely up her big toenail all the way to the nail bed (OUCCCHHH!)
  • Steve and I go out on a date about twice a year, usually to someones wedding and the school auction fundraiser
  • tons of things that are on the to-do list like draw up a will, setup a trust for Ainsley, start a college savings plan, create a budget, save for retirement, just little unimportant things like that
  • I love to take photos but don't have time to manage them
  • I am trying to start a business (something for myself and my future) but I really don't have time so I'm sure that will be a failure
  • I frequently have things I'd love to post on Ainsley's blog and I like to write and find it therapeutic but don't have the time......
....except on Fridays. This is the one day I have a stretch of time alone with Ainsley before the kids come home from school and need a snack and to do homework, start asking me for ABC and I have to chase them around cleaning up the stuff they pull out, before making dinner, squeezing in something fun if we're lucky and then starting the bedtime routine. During those Friday hours I try to work with Ainsley in the many areas she needs help, teaching her words, working with her AAC, trying to "eat", working on capping, learn colors, animals, gross motor (got a reprieve on that one for a few months) like walking and fine motor like holding a crayon, doing a puzzle etc. And MAYBE enjoy a few moments together.  But I also have to do all the things on the list above. And somewhere in there I'd like to enjoy my life.

I was thinking about things this past year. I had an epiphany: Things only happen when you have the intention and a plan. If you aimlessly work on one thing and then another with far more to do than is humanly possible then nothing gets done well. I've been working really hard to check some big things off the list and gain some peace of mind from tying up some of the many loose ends that I sometimes feel are swirling around my head like Medusa's hair. We've done pretty well. We had the house painted, had the chimney tuckpointed and a gas fireplace installed because our chimney was falling apart (a serious earthquake hazard since bricks were just laying on the cap) and the fireplace was unusable.  That's taken a chunk of money and doesn't leave much money for hiring people to do all the other things on the list (like replace the floors so the children aren't getting injured by using them to crawl or walk).

Maybe I really need a professional to examine our lives and to-do lists (there are many) and set a rigid schedule so the schoolwork, paperwork, chores, upkeep and therapies all happen. I can't seem to find the time to meet with my husband and figure it out ourselves. But I'm not a schedule person and I think it would kill me to live like that. So we do the best we can winging it and hope that somehow it will be good enough even though it's really not.

I want more for my kids. I want to be present. And happy enjoying the moments instead of feeling like my life is one giant to-do list full of things I don't want to do. I realized that my kids are growing up. And FAST. Things I dreamed of doing with them weren't happening. One of which was having a small vegetable and flower garden. Instead we have piles of unused stones, dirt and weeds where we had planned to grow vegetables. I think it was rather symbolic of our life.

I realized that we need serious help getting the yard back into shape from years of neglect from having other priorities that had to come first.  But who to hire? As luck would have it I bid on a garden clean-up service at the kid's school auction. The beauty of this is that I was supporting the school and getting something I REALLY needed. I called them the same week, they came out and took a look. The lady was very nice and I had hope that this would be one area of our life I could get back under control with their help.  I got an unexpected e-mail that they were coming on Tuesday instead of Wednesday as scheduled. I was meeting with someone about a new AAC device for Ainsley at that time so I couldn't be there. Things didn't go as planned and essentially they didn't do the weeding I'd expected and they pruned and pulled out plants I wanted left alone.  Without going into all the ugly details, which I already shared with friends on the trach forum, I ended up spending a lot of time I didn't have out in the yard fixing things and later energy dealing with the aftermath this week. The gardener has since offered to come back out and repeat the 10 hours of weeding so perhaps there will be a happy ending.

In the process I had Ainsley out playing on a blanket in the yard and while I was pulling grass out of one of the beds she pulled out her trach. YEP! This makes the 4th accidental decannulation. Yard work has always been scary for this reason. Having your hands covered in dirt (even with Nitrile or waterproof gardening gloves on) is REALLY not good if your child needs suctioning and is even worse if the trach comes out by mistake. Luckily she didn't drop the trach or it could have had a very different outcome. I was able to put the trach back in and go back to my weeding. Things have changed a lot since the days I first received trach training and was terrified by this artificial airway. Still I need to be more careful.

Aside from the gardening drama this week, the accidental decannulation, and looking at AAC devices for Ainsley I also got to tag along to Adrian's field trip to Alki Beach which was fun. I took lots of pictures of the sealife and after lots of searching we even found the animal he's studying: the chiton. We are lucky to live in this beautiful area. It's been a busy week. I apologize for not updating about how Ainsley's been doing since the cast removal.

The first days were tough as I'd said. But things did indeed improve by the end of that first week. She starting being able to sit independently. Since the goal was to get her out of the brace during the days within 2-3 weeks she surpassed that goal getting there in about a week and we even started sending her to school without the brace by Tuesday. Resilient. That's our girl!

We also had some high points such as Sunday when.....

Steve walked into the living room to find Ainsley had covered her doll with a "blanket" and was holding her up on her shoulder like a real baby.

See? Sitting and playing on the floor. Wow, it's been a long time.

Despite having to work again for part of the weekend Steve was able to fix both the front gates which were broken. Yea! Thanks honey, you're the best!
Oh yeah, another thing I've been spending my time doing.....brushing hair. I will be so glad when she's out of this wheelchair! Can you believe this?! She rubs her head against the pillow. Can't you almost see her as a punk rocker in high school?

In case you're wondering: what's a chiton? This is a Mossy Chiton.

The kids said this was a mommy starfish and its babies.

They were everywhere!

And the colors were amazing. Purple, pink, salmon, orange.

It was low tide. There was so much to see. Jellyfish, moon snails, sea anemones, sea stars, crabs, limpets, chitons, hermit crabs, sea slugs, giant barnacles and more. Perhaps I'll have to create a slideshow. 

Ainsley's been doing this little move for a week or so. We figured out it means DVD (that is actually the sign). Which is very cool. She learned it from watching Signing Time. The girl is steadily building up quite a list of signs. Her communication has increased greatly since the hip surgery. I'm really looking forward to getting her mobile again. One thing I know for sure: time passes quickly and she'll be on the move before you know it!

Have a great weekend everyone!

May 21, 2010

Ainsley's Spica Cast Removal

Toward the end of having the spica cast Ainsley was READY to get out of it! She started lifting herself up in it and even pushed herself across the dining room floor the night of the 17th.

At the appointment Tuesday the 18th. We are so excited to get out of the cast and get back into regular clothes. This is Evie's dress (The first time they shared clothes. Ahhhh!) We've been wearing the same 3 dresses for 6 weeks. 

Unfortunately when we were finally called back we still had to wait. Radiology and Dr. S were both behind schedule. Two hours we waited in the cast removal room for the first x-ray to be taken. Talk about boring. Ainsley actually watched TV which she doesn't normally do.

Uh-oh this could be dangerous, although really I'd be fine if she developed a liking for Dora.

Normally they walk you straight back for the x-ray. I'm not sure why there was a 2 hour wait this day. Ainsley developed a fear of radiology after the gastric emptying scan she had when they strapped her to a rotating paddle. She now hates the radiology room! They wanted an x-ray in the cast to make sure things look good before they would remove it.
Here is a full glimpse of the spica cast we've lived with for the past 6 weeks.

Here the tech is cutting it off with a special saw that can cut the cast but can't cut skin. Still, it's loud and to little kids it's still scary. By the time they were ready to take hers off there was a full house and it was loud and many others had gone before us. So to say she was terrified is an understatement. 

It was hard to watch. Even though she wasn't in any pain and held our hands tight the entire time. I wish I could say it ended when the cast came off but she kept this up on and off until we left.

He was so fast I could barely get pictures. He used this spreader to separate the two halves of the cast.

Here you can better see where the cast was cut in two halves.

Then they cut off the inner liner.

Finally her legs are exposed. They look yellowish from sweat when she slept.

After the cast was removed we met with Dr. S for a few minutes. He brought up the x-rays and showed us. They looked good. The one side looks better than the other still but he hopes that the cartilage (which doesn't show on x-rays) will fill in around her left femur and eventually turn to bone, increasing the hip socket. The hope is if that happens she won't need further surgery in the future. She may need to have the plates removed from her legs if they causes her pain. If you want to see x-rays of her hips see this post and click on the picture to enlarge it.

Then they fitted her with a brace and then did another x-ray in the brace to make sure her hips where in position. It's a little different from the brace we had after the last spica cast when she was a year old. Her muscles are stiff and it seems to be painful. Getting her in and out of this brace for diaper changes has been a two person job and worse even than double diapering in the spica cast.

The doctor's goal for us is to wean her out of the brace over the next 2-3 weeks so that she is eventually only using it when she sleeps during the next 6 weeks, until we get the okay to resume normal activity in July. So each day we take her out of the brace for periods of time so she can try moving her legs as tolerated. Sometimes she needs to be put back in the brace because she'll otherwise move her leg into a position that causes pain and she is afraid to move it, so she gets "stuck".  Poor kid. This is the tough part of this surgery, the recovery.

After 4 hours were were finally  done and on our way home. They scheduled this appointment for us on Steve's birthday and I never bothered to change it. My birthday was spent in the hospital the day after this surgery. Steve had been planning to come but caught a cold (not good for sick kids) and didn't come. Luckily so. They were so late I had to have him leave work to meet the kids off the school bus. Wow! We didn't expect that to take so long!

We were surprised she wasn't happier to be out of the cast. This is a pretty good shot of the brace.

When we got home we gave her a nice bath. After 6 weeks, I couldn't wait. Surprisingly the bandages were still stuck. I opted to soak them off in the tub.

The leg incisions looked good. The discoloration here is pen marks and glue. She's got 4 nice good sized new scars to add to her collection. We gave her skin a nice slathering of lotion and put her in her jammies.
We had a nice dinner for Steve's birthday. Opened presents and then had cake. We were a little behind schedule with the cast removal taking up a huge focus of the day but it worked out okay. Sadly as you can see here Ainsley wouldn't even turn her head to look at us for the rest of the night.
But by the next day she was happier. Dr. S wants us to work up to sitting up. And sure enough the next day she used the wheelchair to push herself into a semi-sitting position. It's been a tough week and its going to be a tough recovery but we knew that going into this and I'm sure she'll get there it's just going to take time.

May 16, 2010

Ainsley Learns To Pretend Play

We spent the entire weekend out in the garden, again, trying to rid it of 3 1/2 years of neglect. We've had other priorities. But my Mother's Day gift was to get the garden into shape. I want my children to experience the fun of growing your own vegetables before they are grown up. So we're doing it! This year! The beds were full of grass, morning glory and weeds so it took almost 4 full weekend days to get the job done. Subtracting a little time for a trip to the nursery on Mother's Day to buy the plants. At 9:00 tonight I finished getting all the plants in. I replaced some of my herbs that had died in our recent cold spell. Others I just seem to kill every year, like Tarragon. (Reminder to self: this is the last try!)  But what I really wanted was vegetables: tomatoes, zucchini, lettuce, swiss chard, peppers, peas and green beans. 

Being forced to spend all this time outside was good for Ainsley. Because she's been stuck in this pesky cast for 6 weeks she's developed a tolerance for sitting in the chair for hours at a time. That meant she was much more independent during this massive garden clean-up. We gave her toys to play with and left her at the table on the patio and to our surprise when we came and sat down for a break we noticed she was actually doing pretend play on her own.

We had out the vintage Fisher-Price farm set (Does that bring back childhood memories or what?!). She filled the trough with water from her sippy cup and had the horse and cow drinking from it. It's SO cool that she has made this leap in her play even if it was forced upon her due to being left on her own for long periods of time. Normally she would just put the toys in her mouth.


Drink horsey, drink!

So cute and so proud!

I also love this picture of her pouring water from her sippy cup into a teacup to "drink" it (Ainsley only drinks about 1 tablespoon of liquid at time and is 100% g-tube fed.) because everything tastes better in a teacup, right?

These photos are all unedited for SOOC Saturday (Sunday in my case, yes that's allowed. Hey, I was in the garden living life and working hard all weekend.) and were taken with my Canon 50mm 1.4 lens. It takes beautiful shots, and having some sunlight helps.

May 11, 2010

Ainsley's Great Day At School & 1 Week To Go

Our school nurse was out sick today so I took Ainsley to school. I always enjoy going. It's great to see what Ainsley's up to. She had a great day. I got to see her knock down blocks with the wheelchair during PT. That was cool. We were laughing about how quickly she met the IEP goals for wheelchair use. Here's a video so you can see.

I'd heard there is one girl in particular who really likes Ainsley a lot. But it was neat to actually see for myself. She must have asked 10 times if she could sit next to Ainsley. Ainsley just beams at her. It's so sweet. What is great is that she is a typical kid who is a peer example in the special needs program but she acts just like Ainsley is no different. To her Ainsley's speaking device is a cool toy to play with. She doesn't seem to mind that Ainsley can't actually talk to her, one bit. And she's a year older than Ainsley but that doesn't seem to matter much either.

It was so great to see them playing together! With a little help they tossed the ball back and forth during recess on the playground. It warms my heart and gives me so much hope to think of Ainsley making her first real friend.

In ONE WEEK Ainsley gets her cast off! That means we are almost HALF WAY THERE! Six more weeks in a brace and then we can start the long process of resuming normal activity. I can't wait!

May 9, 2010

Happy Mother's Day!

I'm wishing you you moms out there a Happy Mother's Day, especially my fellow friends of children with medical issues and/or special needs. The demands on us are extra tough and so this day is especially meaningful. This is for you, although it's always there on my special needs page I'm posting it again on this special day in honor of you, some of the most wonderful mother's I've had the privilege of knowing. Enjoy your day!

To You, My Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

May 8, 2010

Ainsley's New Tech-Speak

Yesterday I had such a headache that I couldn't finish the clever post I was writing. Today the sun is out and the yard is beckoning me. I'm hoping this is the year I can get my garden into shape. So I'm just going to post this video without too much explanation. I helped design the overlays (sheets of words) and they made them last week and Steve picked up the device on Friday. Unfortunately we had a stomach bug (vomiting) going around the family so we haven't had a chance to do to much with it at home, although Ainsley takes it to school with her too.  Clearly she loves it and hopefully she'll learn to take it to the next level and actually use for intentional communication. To think it wasn't that long ago that she couldn't even push a button. Looks like we're past that! I thought it was TOO funny that she kept pushing the potty button and giggling. Typical three year old "potty talk". Gotta love it!