Party On!

No blog post today because we are too busy celebrating the beautiful Ashley's birthday!!!  18 YEARS OLD!!!!!

Isn't she lovely
Isn't she wonderful
Isn't she precious
Less than one minute old
I never thought through love we'd be
Making one as lovely as she
But isn't she lovely made from love

Isn't she pretty
Truly the angel's best
Boy, I'm so happy
We have been heaven blessed
I can't believe what God has done
through us he's given life to one
But isn't she lovely made from love

Isn't she lovely
Life and love are the same
Life is ASHLEY
The meaning of her name
LISA, it could have not been done
Without you who conceived the one
That's so very lovely made from love

 

 

Thanks to Stevie Wonder for the lyrics, and a huge thank you to Mamma Lisa for giving birth to my beautiful daughter!

Worries and Blessings

Someone very special has a birthday tomorrow! My 'baby' will be 18 years old, and I am having the toughest time wrapping my brain around that. It was just yesterday that she crawled into my arms after having her second brain tumor surgery at age 18 months. Although it would take another year for her adoption to be finalized, that day our hearts joined as one.

The stages of her growth have always been interesting, to say the least. The move from babyhood to toddler, with all its developmental milestones, both those missed and those achieved. The transition to school and her lifelong love of big yellow busses. Those hormone rich years of teenagery, so many tears, so many new experiences, so much...life! And now, the path to adulthood begins. And while Ashley is embracing it with all the gusto she can muster, I am having a tough time.

The school years, whether easy or rough or somewhere in-between, do offer a bit of comfort. You know where your child will be every day. You know they will be surrounded by similar aged children. You know there are protections in place to ensure your child's well-being (most of the time). But what will adult services bring? What I have explored so far is not bringing me much comfort.

Ashley needs a new aide at home. The current aide is moving on, much to our sadness. Finding aides is such a difficult process, especially finding someone who is reliable and respectful of your family member. We've been very lucky so far, but now I feel my luck is running out.

I've decided to look at other options - things like day support programs. Their hours are not good, and won't allow me to work a full day. Ashley's peers at day support become adults, people from her age on up to much older. I'm not thrilled with that. I've toured the day support programs in my area, and none appeal to me.

I've considered using an agency to provide an in-home aide. Unfortunately, when I tried that with Ronnie, the results were not good. The quality of the staff available left a lot to be desired.

I just don't know what to do but I am running out of time.

And then what happens when Ashley graduates from school? We've got a while yet, but the future as it looks right now is quite frightening. If only I were a little closer to retirement. I've got 6 more years, but Ashley only has at most 4 more years she can stay in school.

But for tomorrow, I am going to set aside all those worries. I'm going to celebrate my beautiful daughter and the special woman she is becoming. My life is so, so blessed...

Dave Makes a Movie

And what a movie it is!! If you need a transcript (some of the words might be a little tough to understand), you can find it on Dave's blog, Rolling Around In My Head. I hope this is the first of many more of Dave's movies!

Garrett's Fight

Trust me and watch this until the end.  If, like me, you have to set aside your opinions on boxing and fighting, please do.  Seeing this is worth the the next 13 minutes of your life. 

What The Heck is an Iliac?

First there was an ultrasound looking for a blood clot. Then there was an insurance battle followed by a cat scan, also looking for a blood clot. That was followed by another ultrasound, and the result of all that? No answers as to why Ashley's right leg and foot have been swollen since last October. The cat scan, according to the hospital radiologist, did show some 'shadowing' that looked 'suspicious'. Both ultrasounds showed no clots and nothing out of the ordinary. Fortunately, Ashley's pediatrician has a bulldog mentality and is determined to figure out what is going on.

I mentioned two weeks ago that our next step was to send the scan and ultrasound results to Massey Cancer Center and have a hematologist/oncologist take a look. After having that person as well as both a pediatric and adult radiologist from the Cancer Center look at the films, we seem to be closer to a diagnosis. ABNORMAL EXTERNAL ILIAC VEIN. Whatever the heck that means.

A second doctor from our pediatric practice called me later Friday with that information. She was still waiting on the written report which she hoped would provide more information, but the hematologist/oncologist said our next step was to visit a vascular surgeon. Now the pediatrician and I need to find one of those...

So I've had all weekend to think about this and to try not to Google it. So far so good, but if I don't hear from a doctor soon, I may have to visit Dr. Google.

I'm glad we are getting closer to figuring this out, but worried at the 'surgeon' word. I'll keep you posted....

The Wisdom of Ace

Ace has something "really importmant" to share and we all need to listen :)

No Greater Fear

This....this is my biggest fear.  The thing that keeps me awake at night.  The thing that makes me pray my last breath comes one second after Ashley's last breath...

Special Exposure Wednesday

Yea!!!  Today is the first day of Spring!  The weather isn't believing it yet, but my forsythia bush is, and that's good enough for me!

Mixing it Up!

This past weekend I splurged on a new blender - a really nice new blender - the Vitamix Pro 300. I have spent the last month researching both the Vitamix and the Blendtec, and Vitamix won.

I really want to try to improve my family's eating habits. I want to get more fruits and vegetables in them, as well as reduce calories and all those other bad things we are not supposed to eat. I figured having a blender that could pulverize almost anything into a healthy smoothie would be a start in the right direction.

So far, between spending hours on Pinterest looking for smoothie recipes, I have made hummus for Ashley. She LOVES hummus, but it can be really expensive in the store. Not so with my new Vitamix. Just two cans of chick peas, and a few other ingredients that I almost always have in my panty, and poof - healthy, cheap hummus! At the grocery store yesterday, the chick peas for $1.00 a can, and I stocked up. Ashley tried the first batch last night and loved it.

I've also made two different types of green smoothies, and what all the recipes say is correct - you really cannot taste the spinach or kale in the smoothie. I made one for breakfast this morning with fruit, spinach, almond milk and Greek yogurt, and I was fine until lunch where normally I would have wanted to snack mid-morning.

So if any of you have any smoothie or hummus recipes you like, please share! And if you use your Vitamix or Blendtec for other awesome things, let me know that also!

She's A Winner!!

Are you familiar with the PTA Reflections Contest that is held every year? If not, here is a good explanation of the program from the National PTA website:

"All children deserve opportunities to explore and be involved in the arts.

The National PTA Reflections program is PTA’s cornerstone arts program. It was developed in 1969 by Colorado’s PTA President Mary Lou Anderson to encourage students to explore their talents and express themselves. Since then, the Reflections Program has inspired millions of students to reflect on a specific theme and create original artwork. Each year, students in Grades Pre-K through 12 are recognized for bringing the theme to life through dance choreography, film production, literature, music composition, photography and visual arts.

In 2012, the Special Artist Division emerged as an optional division for students whose physical, cognitive, or mental health challenges meet ADA guidelines."

Chip competed when he was in elementary school, and won first place in the Photography category for our school district. Ashley has competed several times, but because the Special Artist category didn't exist until this year, she never won. But that changed this year!

The theme of the contest this year was "The Magic of a Moment." Ashley entered a poem in the Special Artist Literature competition, a poem which described her feelings the first time she ever went to the beach. Together, she and I looked at a picture (shown above) that was taken of her that day at the beach, sitting on the edge of the water. She signed and I recorded what she signed:

Ashley Go Beach

No see.
No hear.
Feel wind.
Feel water
Taste salt.
Happy.


ASHLEY WON! She won for the Richmond Metro area (city plus surrounding counties), and she won for the entire state! Her entry now moves on to the National level!! I am so very, very proud of her!!

What I Need

I’m sorely in need of a Spring time. A time of filtered sunlight that feels warm on my face. A time when the birds songs are slightly less hectic. A time of pinks and yellows and blues and fuzzy whites. A time of rebirth and promise and hope. A time of daisies.

Yes, I need daisies...



ATM: Ashley's excitement as she picked the first camellia of the season off the bush by our front door...

Conflicting

When will hospital and medical staff ever learn that parents really do know best? When will educational curriculums for all the different medical professions stress that point to their students? It certainly can’t be soon enough.

When the scheduler at the pediatrician’s office set up Ashley’s ultrasound appointment for this past Tuesday, she very clearly stated that Ashley did not do well in hospitals and with hospital procedures. She told the radiology department that anesthesia would be needed because Ashley was not, among other things, even going to get out of her wheelchair to get on a stretcher. And keep in mind that we were just at this particular hospital, in the radiology department, last week for Ashley’s CT scan under anesthesia.

The ultrasound person was convinced that he could do the test without anesthesia. He said if Ashley got too upset, they would give her a mild sedative. Yea, well, so much for that….

Ashley was VERY upset to be back at the hospital. As we left the registration desk, she locked her legs and pushed back very hard on her wheelchair, clearly indicating she was not happy. Since she is an adult now (or will be on March 29th) and weighs in at 150 pounds, I have a really tough time holding her wheelchair back when she does that. My hip is bruised from having to try.

After calming her in registration, we headed to radiology. Again, as we were being instructed on which room to enter, she locked her legs and refused to enter. I have figured out that if I turn her around and go in backwards, I can usually get her in the room. I’m sure, though, that she will figure out a way to circumvent that very soon.

Not to bore you with details, but the fight was on. Finally I told the tech that if he could try to get the scan in her wheelchair or we would leave. He did acquiesce and tried it in the chair. Ashley tensed up a few more times, but eventually the tech said he had all he needed, and we left to go home.

The pediatrician called me later that evening and told me that the test results were negative for a blood clot. Of course that means the CT scan results and the ultrasound results conflict. The doctor’s next steps involve us seeing a hematologist/oncologist at Massey Cancer Center.  There are two words in that previous sentence that sent me over the edge….

I’m waiting to hear about an appointment, and promise to keep you posted. I’m not handling all this very well….

Special Exposure Wednesday

Cooper loves these funny white balls that melt in his mouth!

Trust Me - ROFL!

It's going to rain today. Probably torrential rain. How do I know? Ashley has her ultrasound scheduled today at the hospital.

I was quite surprised after the cat scan debacle to get the ultrasound scheduled so quickly. But there may still be complications in actually getting it done.

The folks at the hospital in the ultrasound lab don't want to do the test under anesthesia. Even though the doctor's office and I both emphasized the fact that Ashley will not even get out of her wheelchair and onto the stretcher, they think they can do the test without sedation. ROFL.....!!!!!!!

The ultrasound tech did make the comment that if Ashley gets too distressed, they will give her a mild sedative. ROFL....!!!!!

I told them that 'mild seditives' usually have the opposite effect on her. I could even give them references from other medical staff that had that same idea. The tech said 'Trust me' and stood firm. ROFL.....!!!!

So we are on our way to the hospital. I have put Ashley in a pair of shorts with the hope that they won't try to get her to undress. Undressing is not something she will consent to when not under anesthesia. I will update later this afternoon, or maybe even sooner, once they realize that I really do know what does and doesn't work for my child.

ATM: Ashley's excitement today when she put on shorts for the first time since last September...

Roll On Richmond!

This past weekend was the Sportable Spokes Roll On Richmond wheelchair basketball tournament. As usual, Ronnie did a great job and made basket after basket! At the end of the tournament, the Spokes and a team from Baltimore played an exhibition game before the University of Richmond/Duquesne basketball game. To top it all off, the Spokes were spotted on TV when the sports person on the news was talking about the Richmond game! (And a big thanks to Chip for his wonderful pictures of the tournament!)

ATM: The way Ronnie would search me out in the crowd after every basket he made...

Finally, A Cat Scan

The first time was the day that Super Storm Sandy grazed by us on its devastating trek to the NorthEast. The second time, yesterday, was when weather forecasters said the massive snow storm would miss us and provide only rain. But actually, we got 5 inches of snow.

It seems like every time Ashley has a hospital procedure scheduled to attempt to figure out why her right leg and foot are swollen, a huge weather event happens.

We left home at 6:15 am, headed to the hospital for the long awaited cat scan of Ashley’s hip and leg. Insurance battles had delayed the scan for 4 months, but finally we were on the schedule. The rain was heavy and mixed with sleet, but we managed to find a close handicapped parking space and get into the hospital without getting too soaked.

The registration and set up for the scan took an especially long time. As one of the nurses told me – a lot of the hospital staff was having problems getting to work due to the weather, but all the patients made sure to get there because, like us, they had waited a while for their appointments. But even given all the waiting, every staff person with whom we had contact was absolutely wonderful with Ashley, and went out of their way to make sure she was comfortable and had everything she needed. Because of that special attention, I was able to keep Ashley’s anxiety at bay until we moved into the actual room with the cat scan machine.

Ashley, as I have mentioned in previous posts, freaks out in medical settings. I probably would also if I had been through the 100s of tests/procedures/surgeries that she had. She will not move from her wheelchair to a stretcher (or the cat scan machine), and there is absolutely no convincing her otherwise. So all her procedures need to be done under anesthesia, and even then, it can be a battle.

Fortunately all the staff, including the anesthesia staff, the radiologists, and all nurses, listened to me about how everything should play out. I told them we needed three strong men to move Ashley from her chair to the machine. And they would have to put the mask on her face first to get her under. I warned them she would fight that, but if we worked together, we could make it happen with as little trauma as possible. And that is exactly what happened.

The anesthesiology nurse told me to back Ashley’s chair into the room and close to the machine. That was brilliant because once all the players were in place, that nurse came from behind Ashley with the mask and smoothly maneuvered it onto her face. Ashley, being the smart cookie that she is, decided to just hold her breath and not breathe in the gas. That effort, though admirable on her part, could only last so long, and soon she relaxed back into her chair. The burly men took over and moved her to the machine, and only about 20 minutes later, the scan was done!

Ashley was moved to the recovery room, and the staff agreed that I needed to stay with her the whole time so she could see me when she opened her eyes. She did just that, realized everything was done, signed that she wanted her shoes on and her IV out, and was ready to go home. She had no negative effects from the anesthesia, and we were allowed to leave pretty quickly. I was told Ashley’s doctor would get the results in a few days, and would call me.

But the fun didn’t stop there. As we left the hospital, I soon saw that the rain that had started our day had turned to snow and dumped about 3 inches onto the parking lot. There was no way I was going to be able to push Ashley’s chair through the snow to get to our car.

In stepped another hero of the day! The hospital offers free valet parking, but it wasn’t available when we first arrived. It was in full operation when we left though, and one of the valets offered to get my car. And not only did he go and get it, he wiped all the snow off, let it warm up a bit, and then helped lift Ashley’s chair into the car once I got her into the front seat.

UPDATE: I heard from the doctor this morning. The cat scan revealed two masses in Ashley’s upper leg, but the radiologist couldn’t tell much more than that. He didn’t know if the masses were blood clots or tumors of some sort. He said he needed to do a special type of ultrasound to get a better look. The doctor’s office is working on getting the authorization and schedule for that. I just hope it doesn’t take another 3 months!

(When I know when it is scheduled, I will be sure to let you all know because surely there will be a tornado, a tsunami, or some other huge weather event!)

ATM: Holding Ashley's hand as she drifted to sleep from her anesthesia...

Spread The Word to End The Word!

Today is the annual day of awareness about stopping the use of the R-Word. Will you commit to helping? Will you Take the Pledge?


When a friend of family member uses the R-word:

Person 1: I am such a retard; I forgot to get milk at the grocery store.

Person 2: Hey, I would appreciate it if you didn’t use the word retard around me anymore.

Person 1: Oh don’t worry about it; it’s not a big deal.

Person 2: It actually is a big deal, when you use retard as a synonym for stupid or idiot, you are saying that all people with intellectual disabilities are stupid, and that’s definitely not true.

Person 1: But I’m not making fun of people who are mentally retarded, it’s just a figure of speech. It’s how I talk.

Person 2: The thing is, when you use the R-word as slang, you really are hurting people with intellectual disabilities because of the negative connotation of your comment. The R-word has been associated with people with intellectual and developmental disabilities since its inception, so when you use the word in a negative context, you’re putting down people with intellectual disabilities, regardless of if you mean to or not.

Person 1: I appreciate what you’re saying, but it’s imbedded into my vocabulary. I couldn’t stop saying it if I tried.

Person 2: I’m not trying to tell you what you can or cannot say, but what I want you to recognize is that people with intellectual disabilities deserve respect, and using another word instead of the R-word is one step towards making them feel respected and valued in society.

Person 1: Ok, I can understand it might be hurtful to use the word when a person with an intellectual disability is around, but why does it matter now, when I’m just hanging out and joking with my friends?

Person 2: Using the R-word doesn’t just hurt people with intellectual disabilities, but it also hurt their friends and families. [Discuss personal story about why this is important to you]. Having seen the hurt that the R-word can cause, I know it’s important for me to take a stand and try to change the conversation. I hope you can understand why it hurts and upsets me when the R-word is used and why I would appreciate if you chose another word to use.

Person 1: I’m sorry; I didn’t realize how much the R-word upset you. I will try to use another word instead.

Person 2: Thank you for understanding.

No More Augmentin

I've worried about this happening for quite a few years. I knew that the antibiotic that had worked wonders for Ashley's ear infections might one day become ineffective, but I hoped it would be a long time from now. Unfortunately, we seem to have reached that point.

Ashley gets lots and lots of ear infections. She has had tubes over the years, but they don't seem to make much of a difference. And, internally her ear is not formed like most ears. The eustachian tube, which in most people is horizontal when they are very young, eventually slants upward allowing for proper drainage. When the tube is horizontal, draining is very difficult to achieve. Ashley's eustachian tube has remained in the horizontal position.

The doctor and I realized several years ago that some of the more common antibiotics didn't work for Ashley. So the 'pink' medicine was not an option, and anything with 'cef' in its name also didn't work (omnicef, cefzil, etc.). But, we were having good luck with Augmentin.

She started many years ago on a normal 7 day course of Augmentin, and the ear infections would clear up. Then we had to go 10, and finally in recent years, it took 14 days of Augmentin to clear the infection. This past Saturday was day 13 of her latest ear infections, and we were back at the doctor's office because one of her ears was so infected that it ruptured Friday at school.

So the Augmentin regime is over.

The doctor prescribed Bactrim, and we will see if that is effective. He started with the 10 day course, and is hoping that will be adequate. Ashley did appear to be feeling better on Sunday, so I am keeping my fingers crossed.

Has anyone else experienced this, and if so, what did you do to find something that worked?

ATM: Watching Ronnie over the weekend finally able to hang up his clothes with no help whatsoever...

Hair Hell No More

Remember the post I wrote back in January about the difficulties Ashley experiences every time she goes to the salon for a haircut? I have a solution!!!

I spent all last week finding YouTube videos about how to cut hair. You wouldn't believe how many such videos there are. Some are from actual stylists, even some famous ones, and some are from moms like me who want to save money or who may have children with sensory issues that cause problems at a hair studio. So armed with my YouTube education, and a home haircutting kit I bought at Sally's Beauty Supply, I plunged into Ashley's hair after apologizing in advance if I messed it up.

As suggested by several of the YouTube videos, I put something on TV for Ash, propped her up in a chair in front of the TV, and most importantly, gave her a selection of brightly colored clips to play with.

She was perfect after that! She sat still, she followed directions, and I didn't cut her with the scissors even once. Granted, I can use more practice on the actual haircutting skills, but fortunately for me, Ashley's hair grows like a weed! She seemed happy with the finished product, and I am happy that it turned out at least as good as it did with the salon stylist battle!

Here is my beautiful girl...

ATM: The complete and utter trust my children have in me...

Fancy Schmancy

My house is starting to feel like a wheelchair store, but Ronnie got a new chair and it is something else!

Research shows that a person who uses a wheelchair 100% of the time can definitely benefit from also spending some time standing. This is often accomplished by investing in a stander as well as the wheelchair. But Ronnie's physical therapist found us something else - a wheelchair that goes into a standing position!

Here he is sitting in the chair...

And here he is with it in the standing position....

It's still a manual wheelchair. He has complete control over when and how straight he wishes to stand. He can now work on skills such as hanging up his own clothes, cooking and washing dishes. He can stand up to play a video game if he wants, and he can even stand and 'dance' at his school prom! Needless to say, he is loving his new chair!

(The picture above of him throwing a basketball might give the impression that he can play basketball with this particular chair. He cannot because the chair does not have the correct camber of wheels needed for safety and even more importantly, when he is in a standing position, he cannot move the chair.)

ATM: Watching the wheels turn in Ronnie's mind as he figures out how many new things he can do with his standing wheelchair...