Aug 23, 2013

Good News!

I have good news! Thankfully we worked out a temporary resolution to our nursing dispute with the school district. By noon I hadn't heard from the Superintendent of Special Ed so I contacted the next level up in the dispute resolution chart. Within a half hour I received a call from his assistant letting me know what was going on. They all have been in meetings all week regarding nursing for the entire district. His assistant let me know that they would call by the end of the day.

Sure enough when they finished their meeting the Superintendent of Special Education called me with an apology. They didn't understand the full situation. They will allow us to use the same nurses for at least the first month. Which is what I proposed since school starts in a week. After the school year has started we can meet at their convenience to discuss any change to the plan. I hope they'll be too busy and it will just be easier for everybody to keep with the current plan.

I was able to call both nurses, figure out who is working which days so that everybody is happy. LWSD just needs to call the nursing agency. Luckily Ainsley will be able to start school as planned. Yay! We will not lose the nurse who has cared for Ainsley for nearly 5 years. Double yay!

AND I will finally be able to sleep again. Thank God!!! Advocating for your child is draining.

I hadn't had a chance to mention....We were contacted by a company shooting a magazine for Lowe's about using our yard for a photo shoot. We hadn't heard back all summer....Until this week. It's a much bigger thing than we'd been told. They'll be here for 12 days. They planned to fly in to start on 9/3. THE FIRST DAY OF SCHOOL. And they'll need access to my bathroom which means I need to be home or feel comfortable leaving strangers with access to my home. The timing is less than ideal especially considering the nursing crisis but now that that is resolved I'm feeling better about it. Especially since today I got a copy of their insurance certificate (in case any of their models get hurt, or there is any damage to our patio, pergola or pots while they are moving things around).  It will be nice to use the money they'll pay us toward fixing the hole in the backyard left from the tree removal. It should be an interesting experience. 

I hope you have a great weekend! I know I will. I feel like a weight has been lifted off my shoulders. Steve is taking Evie and Adrian to Wild Waves. I plan to organize my papers. I've got insurance EOB's stacked up, school work from last year, an expired to-do pile that needs to be re-prioritized, loads of Ainsley's medical paperwork to organize (do you ever do the medical/hospital surveys? I don't), school paperwork to complete, bills to pay etc. It's my goal to start the year off organized before the onslaught of paperwork starts. The last of my hard to find school supplies are arriving via Amazon. All I need is to buy one pair of jazz shoes and pack up the backpacks. Hooray! I'm ready!

Aug 22, 2013

Back To School?

While most people are only concerned with getting basic supplies like paper, pencils and crayons, maybe some school clothes, we are having a MAJOR back to school CRISIS.  The Lake Washington School District has thrown us a major curve ball just 2 weeks before school starts. They are telling us that we can no longer use our home health nurse during school hours because they want to hire their own employee. (The school district is legally required to pay for the hours of nursing that Ainsley is at school and so they feel they should have the right to hire their own employee.) They could have given us plenty of warning that they wanted to make a change by discussing this at our last IEP meeting in June but instead they waited until I called them to finalize the plan, to tell me.

Of course I wanted to know why. They couldn't really give me a logical or valid reason other than that it's their preferred policy when possible. Clearly they have an agenda and I've done a little investigating and I suspect the real reason is probably against IDEA policy. $ They said something about continuity for student and staff. When the nurses that we planned to use have worked the past year and a half at the school with the staff and therapists, how can replacing them provide continuity?! Quality? The two nurses we've used are very well qualified. Especially since they both have EXPERIENCE caring for AINSLEY.

All week I've been trying to get a firm answer and all I've received is e-mails thanking me for being patient and that they need more time.  Actually I'm not being patient at all. I NEED TO KNOW what is going on. Many people's lives are affected by their decision. I'll spare you most of the nitty gritty but just know I have spent a LOT of time making phone calls and drafting perfectly worded e-mails to the Director and Associate Director of Special Education. I have been respectful, logical and offered several reasonable solutions to this dispute. I think I've also explained why it really IS in Ainsley's best interest to continue with the nurse(s) she knows.

The whole situation has really caused me a lot of distress. I should be enjoying the final days of summer spending time with my children before they return to school but intead I am preoccupied and tense. I am unable to sleep. I'm not sure if the staff at LWSD just don't understand how much this affects us or if it's really THAT THEY JUST DON'T CARE. They cannot convince me that this is in any way in Ainsley's best interest. It isn't. Period. It's in their interet. But they are supposed to do what is best for the student.

They compared the situation to that of hiring OTs/PT's and SLP's. Nurses are one-on-one patient relationships. It is in no way the same. We aren't talking about a school nurse that cares for all the students.  I don't think they have a lot of students that have a state provided home health nurse like we do (We have authorization for 10 hours per day 7 days a week.). If we didn't use home health nurses I wouldn't care if they used an agency or hired a nurse as an employee.

Families like ours rely on home health nurses for help NOT JUST DURING SCHOOL HOURS. If I can't offer a full shift to a nurse I won't be able to keep/get one. There are a lot of extra demands when caring for a disabled child with a trach and g-tube.  I have 3 children in 3 different schools. Evie is starting at a choice school and that requires that we transport her 30 minutes away. We are lucky enough to be in  a carpool with other parents, otherwise with a child like Ainsley we would have to pass on this wonderful opportunity.  Having a sibling like Ainsley isn't easy. My other children deserve some of my time and attention too!

Like every other parent I need to make arrangements but I am completely stuck with NO IDEA how this is going to play out.

You might be wondering why this is the school's business.

Children with trachs need a nurse to care for them in the busy environment of school to keep them safe. A trach is an artificial airway and since it's just a plastic tube held in place by a tie it can come out and be life threatening. A surprising fact is that few nurses have actually inserted a tracheostomy into a patient's neck. It's certainly not something you can leave to a teacher or aide! And it cannot wait until someone "notices" or an ambulance arrives. I always make it a point to know that every person left in charge of Ainsley's care has actual hands on experience replacing a trach so that they can handle it in the event that it happens in their care.

Ainsley's trach has come out by accident about 8 times. So far it's never happened at school but it has happened in the car twice, on an airplane, while I was in the bathroom, and at home on several occasions. Just because it hasn't happened at school yet doesn't meant hat it won't. Last year her g-tube did come out unexpectedly at school and the nurse had to replace it.

There have been real instances when a child with a trach died at school because they were not being adequately watched, the tube came out, and no one properly trained was available to reinsert the trach. It is a liability to the school district.

In addition the nurse suctions secretions from the trach so that she can breathe properly, monitors Ainlsey's breathing and helps replace her cap with a speaking valve as needed. She helps Ainsley to the bathroom, helps with her mobility, caries her equipment (suction machine, spare trachs and supplies that must be with her at all times) helps her with her backpack, assists her at snack and lunch, adminsters tube feedings and assists with Ainsley's communication device and other communication. Ainsley's nurses do A LOT. She NEEDS this support.

I also need the nurse at home when Ainsley is too sick to go to school, to attend doctors appointments and to help monitor Ainsley's over all health. The nurse helps us decide when medical attention is needed by listening to her lungs. In 6 years of intense "on the job training" I've learned a lot of medical stuff but I'm still no good with a stethoscope.

I don't think they should have the right to do this. I really hope it can be worked out so that I can avoid taking it to the next level. I do believe I would have the right to a due process hearing and would hope that reasonable people would side with us that it isn't fair to deny a disabled and medically complex child to attend school with her home health care nurse(s).  Imagine how Ainsley would feel if the person who has cared for her for so long is gone. There is no way to explain that to her.

In addition this is terribly unfair to our nurse. She's worked with us for over 4 years. She's been with us through terrible surgeries, difficult illnesses and seen Ainsley's progression. She has been dependable when not all home health nurses are. She knows my children and the dynamics of our whole family. We trust her. We know she has Ainsley's best interest at heart. I HATE the idea that I can't tell her whether she has a job beyond next week. The school provided nurse, Elsie, that covered the other 3 days a week for the past one and a half school years hadn't been contacted by them so she doesn't know if she has a job or not either.  I even lined up a second home health nurse if they wouldn't allow Elsie to return but I can't hire her either, until I know what the days or hours would be.

Many people's lives are hanging in the balance waiting on this decision. There is a part of me that thinks they might not allow Ainsley to start school on the 3rd. I'm pretty sure that would violate her rights but I can't be sure they won't try.

Before we moved to Remond I'd heard such fantastic things about the Lake Washington School District and I have to say I'm less than impressed. They still have a chance to make things right but I suspect they may not. Please think good thoughts for us that things will go our way and Ainsley will be able to start school this year as planned.

Aug 16, 2013

Blue Lily Photos & Photo-motion Video

I was so happy to wake up today to find the Blue Lily Photography photos and Photo-motion video in my inbox. I've been wanting to tell you about our Photo-motion shoot with them but thought I'd save it for one big post about our experience. You can see their portfolio here.  Unfortunately midway through my day we had a crisis when I learned that we may have a big problem with nursing for the school year that starts in 2 weeks! Grrr. It kind of spoiled my day. Hopefully I can finish this post before the night is over.

First I have to say that Wendy and Tyler are just the nicest people ever! I learned about them through Stephanie Nielson's blog, NieNie Dialogues, and had admired their work for years. Thankfully one night my friend Mel was over visiting and after discussing it over a bottle of wine she convinced me to contact them. Normally Blue Lily has multiple shoots back-to-back in the evening at the location of their choice, during their tours. The exact locations are "to be announced" but I was worried about mobility with Ainsley at an unknown location. They offered to setup a special time just for us and let us choose the place. I booked the Photo-motion shoot to give us more time since we aren't the easiest family to shoot. Plus I really love their videos anyway.

We picked Volunteer Park because we have a bit of a history there. When the kids were little I used to take them there to the playground, the wading pool, birthday parties, to climb on the trees. The kids attended school a few blocks away. I used to stop there after dropping them off to mentally regroup and organize my thought and plans for the day. I really miss that routine. In addition when I was in my twenties and found my birth parents I met my birth father there. Days when I had a nurse but just a short time to kill I would take Evie and Adrian there to climb on the trunks of their low lying ancient trees that are like none other. You'll see them in the photos. We also got pictures in front of the dahlia gardens which was nice. My grandmother was a prize winning flower arranger known for her HUGE dahlia garden. I think we made the right decision on the location.

Blue Lily's photos have a distinct style so I thought they must stylize their clients. Some of the props they've used were fantastic. And their work is so amazing. I imagined they fussed and had a ton of high tech gear, maybe an assistant and a van or bus full of equipment. They don't fuss. And I was quite surprised to see them show up with 2 cameras and some lenses. No props, flashes, reflectors nothing like that. Actually they travel with their two children, currently age 7 & 9. So they travel light by necessity.  The fact that they do what they do, all while on the road homeschooling with 2 kids, is truly amazing. Geniuses that's what they are, living an amazing life.  I could have hung out chatting with them all weekend. I'm sure they have stories to tell.

But we were there to get pictures so I tried to stay focused. They use a digital SLR to shoot the video so often we had no idea which of them was taking video or pictures or when. I was nervous about how it would all turn out. We had a few mishaps leading up to the shoot. Evie's dress unraveled the night before and the hem had to be re-cut. Evie and I used the hairdryers at the same time in 2 bathrooms and it blew a fuse the morning of and that made us a few minutes late (and my hair suffered for it). Steve forgot to brush Ainsley's teeth and I didn't notice until we got there and tried to pick them clean. Ugh. I didn't quite have time to fix the cowlick in her bangs. Partially through the shoot I noticed Evie's hair was coming through her headband, but it was a whirlwind and it didn't have a chance to properly fix it.  Having a new dog didn't help our getting ready and was a bit distracting but I was glad she got to be in our family photos. You really wouldn't know we'd only had her a few days. Having Penny there was fun for the kids. I tried so hard to be prepared. All the clothes were pressed and laid out the night before. Ainsley was bathed. Everything was ready. Despite that there was still an element of chaos even though we got up at 7 to get there by 9:30.

In addition to trying to keep us all "in place" we had to avoid the early bird park goers and there was for some reason about 6 people using metal detectors around the park. They were EVERYWHERE. It was hilarious. In an irritating pain in the rear kind of way.  I was a little stressed but I hope it doesn't come across. The whole thing took a lot of time and energy but I'm SO GLAD WE DID IT!!!  A different kind of person could probably throw on clothes from their normal closet and go all rumpled and it would turn out fantastic. I am not that person. I know without a doubt that if it weren't for the fact that Blue Lily Photography is so unique and goes on tour, and thus is only available for a handful of days, that I would never get around to scheduling a family portrait session. This was the first time I ever hired a professional photographer. We haven't even gone to Sears. EVER. If you are like me I urge you to DO IT! I only regret I didn't do it sooner. I know some of my fellow special needs mom readers worry that their family portraits won't be "perfect" or about the extra effort it will require. DO IT ANYWAY! I am so glad I did. You won't regret it.  Go here to see when Blue Lily will be in your area.

.....AND THE VIDEO.....

Aug 14, 2013

Dog Days of Summer

Sorry for my downer of a post last week. I've picked myself up by my bootstraps and things are okay. It's hard to explain what goes on in the head and heart of a parent of a medically complex special needs child. If you are one I don't need to explain and if you aren't it's probably not worth trying. The only way to truly understand it is to do it day after day, year after year. Reading Welcome To Holland will give a person a sense. It's eloquently put, but some days something will happen and suddenly we just can't look at another f'ing tulip!!!! 

In this case the "something" was having another unenlightening appointment with a specialist who couldn't really help and offered well-meant but unhelpful suggestions like getting a power wheelchair and working with a not-so-helpful dietitian ( if they can come help me day to day and make adjustments every time Ainsley doesn't eat what I serve her and things like that then maybe...).  Really they can't help it. Doctors are people not Gods. They want to help but there are times that they really can't.

The next day we had our orthopedics appointment and though he said there is nothing that can be done for the lack of tissue under her massive thigh scars, and he can't tell me how tall she might be (my guess is super tall, she's already 4'1" and I'm worried), and that he doesn't think orthotics will help her....he WAS able to confirm that the hip surgery results were good and her hips still look good, again he confirmed her knees are not deformed she's just knobby kneed from being kinda skinny AND he doesn't think there is any reason to worry about her back. So we don't see him for 2 years! WooHoo! The only reason her back came up is that Mild Scoliosis was mentioned in a report by a doctor last fall. I believed it was an error. If she really had Scoliosis the billions of doctors we see would have mentioned it, right? And we should have had an x-ray for a baseline, since an x-ray is the only way to diagnose Scoliosis for sure. He said we didn't need one and we didn't need to worry. Yay! We really don't need to be adding more diagnosis that we don't actually have thank-you-very-much. I was very happy to inform the physical therapist at hippotherapy today.

We've been working a ton on oral feeding and that always puts me a little on edge. It's exhausting and the truth is I'm a bit resentful of the hours it takes from my days. But then if we want her to eat then that's what it will take. Many times I just want to give up and feed her the cans of formula. But if I do then we will be stuck doing that for the rest of her life. Sometimes the bitter truth is there is NO EASY WAY out.

Usually what makes me feel better when I'm feeling overloaded is to just love my child. Some snuggles with Ainsley helps bring me out of my head and into the present. That and a good night's sleep, and maybe a good cry, make a world of difference.

And then there are the inchstones that come and must be celebrated.  Every. Little. Victory. That's what keeps me going. This week Ainsley ate small plates of table food. Sometimes I had to place the food between her molars. If I leave the table she just simply sits there and doesn't eat. But if I help she will do it. What she couldn't finish I pureed into a textured puree and she was able to eat it (in the past it always had to be perfectly smooth).  Yes we have to supplement with formula. Yes the amount of work it is gives me doubts. But she is EATING. Real FOOD.

It's a BIG deal. She's made so much progress! Look how proud she is!
This week: scrambled eggs & toast, crepes, pizza, spaghetti & meatballs, chicken breast and vegetables, peaches, mac-n-cheese, spinach & pesto tortellini with chicken.
I am worried though what will happen when the school year starts in September. She (and we) can't spend this much time eating. That and usually cold and flu season bring her feeding progress to a grinding halt. But maybe this time will be different and it won't all be for naught. 
Then on another front the PT exercises we've been doing (squats, alternating standing for 3 seconds on each foot, and clam shells as well as the usual stretches) have bulked up her legs and she's growing a little butt. Spending a lot of time standing around the pool helps too. She's STRONGER. In the past couple days twice she was able to get on and off the toilet BY HERSELF. Yes she needed help getting her pants back on but still this is AMAZING! It gives us hope that some day she might be able to do it herself. IMAGINE THAT?!
See this?! That is Steve doing Ainsley's exercises. I can count the number of times he's them on one hand but maybe that's finally going to change. He's also been helping with her oral feeding. Maybe the communication device next? Writing skills? ABC's and 123's? Medical supply orders? Appointment and surgery scheduling? etc. Okay probably not. But I am thankfully to have more help and hope there will be more to come now that he's home regularly in the evenings and weekends for a couple months.
Remember I said we were working hard on the home front?
We paid big bucks to have 2 huge diseased trees removed plus another biggy, 6 small ones that were badly placed as well as a little clean-up in the neighbors yard (dead wood we were tired of looking at but that was just a small part of the work). Now we have a giant hole. I didn't expect the area to be so barren. And now we can see the neighbors house (we're a little spoiled with the amount of privacy we have had). It will need re-landscaping. Some days I really just wish I had an apartment.
We do now have a nice view of the neighbor majestic maple tree.
Hopefully we'll get a bit more sun in our yard. It's so shady.  
Adrian was EXTREMELY upset that we killed LIVING THINGS.
I felt awful.
  But see the rot? It had to be done. We don't want the disease to spread, or the trees to fall. We wanted the wood (evidence) gone. The guys that were lined up to take it couldn't fit it all in their trailer so this much is left and we have to arrange a second pick-up this week. Luckily Adiran seems to be over it now.

Our iron furniture has been leaving rust rings on the patio. We needed to paint it and put new caps on the feet before the rain comes or go yet another year without it getting done. What a lot of work in the hottest days of summer!!! My arm was sore from so much spraying! But they look good. After washing the cushions I feel like we got new furniture.
Let this serve as a warning not to spray paint in bare feet.

Steve's sisters came for dinner and to meet Penny. I decided that despite my proclivity to throwing crazy parties it was a little ridiculous to throw a "Meet Penny Party".  My imagination could really get the better of me on that one. So if you want to meet Penny you'll have to come visit.
That night Steve decided for some weird reason to teach the kids to play blackjack. I think the girls were more interested in arranging the chips for display. It was a fun night. Steve did the cooking so I got to relax and it was nice!
We got the pool out last week and repaired it so we could set it up and enjoy it during the dog days of summer in August.
Speaking of dogs. We found out while the kids were at camp that Penny had worms and despite being "pee-pad trained" she failed to poop or pee on the pads. We got a de-worming pill from the vet and she's now worm free and due for a booster on Thursday.  She's still having accidents in the house but things are improving so I'm happier now that there are no worm filled gifts left on the carpet. (Thank God for my carpet cleaner!) Plus Adrian home from camp to care for her and that makes me happy too. She got in the pool with the kids but it's not her favorite. Every day I think she's bigger but then I realize it's just fluff (hair).
She does love laying in the plant beds. And digging in the dirt. Thankfully I've stopped her from using the plant bed by the backdoor as her "litterbox". Lucky thing she's so cute.
Having a puppy is a lot of work. Adrian is learning this the hard way.
Penny has started to play fetch with a ball or her starfish "frisbee", which is fun. She's really a pretty smart dog and I think she will be perfect for us. Unfortunately even though she's a Doodle (Aussiedoodle) I'm still allergic, but it's tolerable. I say, as I sit itchy at the computer because Penny loves to lay under the desk. Such is the price for love.
Speaking of love. How do you feel about doggy kisses?
 Tell me in the comments. I really want to know.
Earlier in the week Evie asked to make crepes for breakfast. She mixed the batter and I poured. I remember loving crepes at her age and trying to make them. Full circle. Wow she's growing up! As a sibling she's really stepped up to help with Ainsley. I'm so proud of her and the young lady she's becoming! 

Today we made peach smoothies (TJ's had the BEST peaches I've ever had in my life this year, $5 for a box of 12). And since it was a therapy night we had a salad for dinner afterward since it's quick. Yum!
I love this time of year, when we can sit outside and eat meals on the patio!
Over the weekend we cleaned out the kennel (and sold it today for $150). I washed down tons of stuff to sell and give away on Craigslist. I am a bit of an environmentalist and I'm going to step up on my soapbox for a minute to urge you to RETHINK throwing things away. Even things you think nobody would possibly want. We had a big rusty metal shelving unit. One shelf was rusted through but within an hour of posting a listing on Craiglist a couple came and picked it up to use in their shop (probably after removing the bad shelf).
We also got rid of a weed wacker with a broken fuel line (that went in minutes), a heavy duty garbage can with a broken handle (one was good). 
Plus I love seeing someone be happy to get something they can use, for FREE.
Also you'd be surprised what people will buy. Even better than cash in your pocket is getting rid of the clutter!
We have almost 3 weeks of summer left. It stinks to spend it cleaning and organizing but I'd like to get some outdoor things done before the rain comes. We also have a few fun things we plan to squeeze in before school starts. It's tough to juggle everything don't you think? I hope things are going well for those of you who are already headed back to school.
We are still waiting for our Blue Lily photos. Don't worry, I'll be sure to share when they come.

Aug 7, 2013

You're One In Seven Billion!

Had an appointment today. And confirmed that Ainsley really is one of a kind. Her particular cerebellum malformation has NEVER BEEN SEEN. Yeah, yeah I already new that, but the neuro doc consulted with a new "expert" that I read about on the Cerebellar Hypoplasia  Facebook support group. He relocated to Seattle a couple years after Ainsley was born and works closely with Ainsley's doc, lucky for us. They are both researchers. Normally it takes 9 months to get Dr. Dobyn to read your child's MRI. But since they work together our doc chatted with him and he reviewed her MRI. In decades of research he's reviewed over 2,000 of MRI's and none are quite like Ainsley's.  This means that we have no basis of comparison. It sucks. He is going to admit her DNA into his research for further genome analysis. That won't make much difference to her day to day life. We'll just keep on doing the best we can for our super special girl. Even though at the moment I'm not so happy I am thankful that Ainsley is. 

Tomorrow we see the orthopedic surgeon. She'll get hip x-rays and with any luck her hips still look good. Our hope is that her second hip surgery and spica cast, 3 years ago, was the last. Although I hate losing 2 days this week driving across the bridge I'm really happy to get this appointment. It was a last minute cancellation. This specialist was booked out to January so I was going to switch docs after he cancelled our October appointment.  He isn't the surgeon that performed Ainsley's hip surgeries, who left to become Chief of Staff at Shriner's Hospital in Los Angeles but he is the new "hip expert" at Seattle Children's and he inherited our case.

I'm looking forward to the weekend as I'm sure you are too. This week we fixed up our outdoor furniture (which is iron and rusting) and had some trees cut down. It's been a lot of work. I'm tired. Oh yeah, I think I already said that. But really. I am.