Termination of Funding?!

There is a bill in the Arizona State Legislature right now called SB1519 and it proposes to cut AHCCCS (which stands for Arizona Health Care Cost Containment System), which is basically our state's version of Medicaid. AHCCCS also provides Sadie and our family with cost assistance on therapy, equipment, respite, and medical bills. Cutting AHCCCS would devastate our family's financial situation, and that of many others.

The argument is that AHCCCS is not working the way it should. Cutting the program would balance our budget in Arizona...but money isn't everything. The negative impact of this bill would FAR outweigh the positive, in my opinion. Not only would this cut funding for many developmentally disabled and medically fragile people in our state, but it would also effect healthcare providers who depend on that funding to receive payment from their patients. This bill has the potential to put who hospitals out of business.

So, what can YOU do about it?

I've written a letter and I've emailed it to my legislator. You are welcome to take this letter and adapt it to your own situation if you are living in Arizona and this bill effects you. If you are not in Arizona, or you are, but this bill does NOT effect you personally, I would invite you to copy this letter, adapt it a little and send it in for Sadie. Especially if you are in the state of Arizona. The louder we yell, the better chance we have to be heard, and we need to be Sadie's voice for her until she is able to speak for herself.

There is a website where you can copy and paste this letter and it will be emailed directly to your legislator, then you can also print off a copy and send it through the mail. If you are not in Arizona, I'm sure any Arizona address will work, but if you have our address, please use that one. Here is the link.

And here is the letter:

Honorable,

I’m writing you about bill SB1519 proposing that Arizona eliminates AHCCCS and withdraws from Federal funding for Medicaid. As you know, AHCCCS provides over 90% of the funding for DDD (Division of Developmental Disabilities). My daughter, Sadie Mae, would be severely impacted by these cuts. After a completely healthy pregnancy, I delivered a sick baby who wasn’t breathing on January 19, 2010. She had been attacked by the neuro-toxins from the Group B Strep virus and it left her severely brain damaged. Hypoxia at birth only compounded and accelerated the damage. She was put on brain cooling in the Phoenix Children’s Hospital NICU, a new procedure done with newborns who suffer from hypoxic ischemic encephalopathy, and I believe that this procedure saved her life. After being told that she would never even be able to breathe on her own, we decided to remove her breathing tube and ask that the hospital staff do not resuscitate. Miraculously, Sadie lived, but now she faces life with significant developmental disabilities.

Sadie’s major diagnoses are the following:

· Cerebral Palsy – with hypotonia in her limps, and distonia in her trunk

· Cortical Visual Impairment (visual impairment related to how the brain processes, not related to the eyes themselves)

· Microcephaly – due to the damage in her brain, her occipital lobe did not develop therefore failing to expand her skull and leaving her with a smaller-than-average head.

· Insomnia – due to the lack of seratonin her brain makes, she doesn’t sleep

· GERD – spasticity of her muscles causes Sadie to reflux several times a day after eating

Sadie also does not like riding in the car, which makes it very difficult for us to go anywhere as a family, or for me to get anything done during the day. She is nonverbal, and her limited ability to control her muscles makes it hard for Sadie to communicate what she needs. Sadie also processes pain differently than you or I and it’s very hard for her to understand teething, reflux, or growing pains. She has a very hard time acclimating to a new situation and becomes very irritable and inconsolable, we hesitate to take her anywhere or introduce her to any new environment. Because of her sensitivity she also will only nap while being held.

Cutting AHCCCS (and funding for DDD) would not only impact my family, it would also impact all those working to support my family. Sadie receives the following services through DDD and Arizona Long Term Care (AHCCCS). If we were to lose services the following people would also be financially impacted and possibly lose their jobs:

1. Sheila L., Vision Therapist-Foundation for Blind Children

2. Jessica D.., Occupational Therapist- Arcadia Therapy Services

3. Tami H., Physical Therapist-Kidability

4. Melissa L., Music Therapist, Neurological Music Therapies of Southern Arizona

5. Nancy P., Speech Therapist, Family Partners

6. Zahira R., Respite Provider, CASS

Sadie also sees the following doctors: ophthalmologist, neurologist, orthopedic doctor, GI doctor, and primary care doctor.

In order to progress physically and cognitively Sadie needs these services. In order for my family to continue to be hopeful for the future and for my marriage to stay strong we need these services. In order for our economy to improve we need to keep these service jobs available to therapists, respite, and habilitation workers, etc.

To deny young minds the chance to thrive will cost us as citizens for the rest of our lives. To nurture and help them match their wonderful intellect with their bodies creates individuals that can go on and be productive.

We all understand that we need to find ways to change and correct certain aspects in the government. To just strip and take away vital services and destroy families cannot be a solution to our problems.

Sincerely,

Here are some more links about this bill (and you are welcome to do your own google research!):

The actual bill if you want to read the exact wording

Here's an attorney's opinion

Here's an opinion from a news blog

We appreciate any help you give in this matter as it is very important and directly effects our family.

Thank you.

Sadie's weigh in

Today was Sadie's weigh in appointment. She passed. With flying colors.

Some background...at Sadie's 12 month appointment she had fallen off the charts in the weight category. She weighed 17lbs 6oz. She wasn't just going down in percentiles, I think she had actually LOST some weight from her 9 month appointment! We were told, "come back in a month and weigh in, let's hope she's gained." It's actually been about 6 weeks, and we've learned a LOT about Sadie in these 6 weeks.

1. Sadie has no problem eating. She does, however, having an appetite problem. When she's hungry she can pound 4-5 ounces of food! But 3 hours later, when you'd think she'd be hungry again, I have force her to eat an ounce and a half. This leads me to believe her GI isn't moving like it should.

2. Sadie still pukes little spit-ups once or twice a day. It's not like a gigantic exorcist puke where her head spins and her eyes shoot out lasers. It's more like a burp and food comes up with it...like spit up, but with apricots and yogurt, so it smells worse. This is more evidence that leads us to believe her GI isn't moving like it should.

3. Sadie eats generally 10-12 ounces a day (this is a lot less than a normal baby her age) and about 350-450 calories (again WAAAAAY less than a normal baby this age). She nurses, but not a lot. And most of her calories are probably from oils, pure fat.

4. Sadie is dehydrated. Since she's not nursing a whole lot (mostly by her choice *sad lip*), she should be drinking water, but she still struggles with the sippy. When she gets it, she gets it. She can suck and swallow just like nursing if she really tries. But most of the time she doesn't try. So we resort to squirting it down her throat, which leads to choking, which can sometimes lead to puke...then we've just defeated the whole purpose of it all in the first place. Maybe Sadie needs her water thickened? But I'm not sure if that will encourage her to drink. This problem still baffles me.

5. Sadie will not eat unless it's just after she's woken up from a nap. We now have a pretty consistent schedule to where she gets 3 little naps (usually less than 30 minutes) throughout the day. These serve to reset her and to calm her enough that she can eat without too much struggle. I'm not sure she's really learned what hunger is, maybe she doesn't ever feel hungry? She doesn't seem to ever indicate when she is hungry, and it's really hard to feed her if she hasn't cat napped first. Again, I'm not sure how to solve this problem.

Today was the first day in over a month that I didn't write down every ounce of food or water that Sadie has eaten. It felt so good. I didn't even add oil to every meal. I didn't stress about it at all. She drank more water in one sitting than she has ever (almost 2.5 ounces), and she ate all four meals that I fed her without a problem. I don't know how much she ate, I don't know how many calories it was, I'm not even sure what time it was that I fed her. And it feels so good to say that. I can now relax a little about this.

So, how much does Sadie weigh? Today she weighed in at 18lbs 13oz!! She had gained about a pound and a half!!! The doctor was so happy, we were so happy, it was a victory for special needs mommyland. But we're still going to go see a GI doctor. We don't know why she's not hungry, do we need to push things through her system? Or do we just need to stimulate her appetite? And we don't know why thinner foods/liquids are harder to swallow. So, tomorrow I call GI and schedule an appointment. Dr. Wendy prepared me. And I know a little what to expect. She's totally supportive and always stands behind my decisions of what I think is best. She understands our reasoning behind our vaccination decisions and our medication decisions and she understands that we don't want to put a bunch of artificial preservatives in our baby just to get her to eat or gain weight. So, she's sending us to GI, but she's not abandoning us. She even told me that I can call her and talk anything over with her before I make a decision about a medicine or test or procedure or anything. I wish everybody had a pediatrician like Wendy!

Thank you everyone who prayed for us. Thanks everyone who supported us and encouraged us. I feel like we've reached a milestone...on to the next one! (car screaming?)

My Race Log

I started running at the end of August 2010. I could barely run 90 seconds at that point. Actually, I think one of the first times I went, I actually had to stop and sit down by the side of the road and put my head between my knees! I think at the time I blamed it on the weather...but I was seriously out of shape! Since then, I've dropped 2 pants sizes and am smaller than I was when I was 15!!

After less than 6 months, January 16, I ran in the Rock 'n Roll Half Marathon and raised over $1500 for Phoenix Children's Hospital. That was a seriously hard thing to do! ...way harder than having a baby! But what a way to kick off my running "career" with a bang!

Since the half marathon, I've run with my friends from work in 2 different 10K races, both to benefit sick &/or disabled children. There has been talk of starting a running club to support each other by running together in various charity races around the valley, the state, maybe even out of state! But I wanted to start this running blog post just to keep track of the races I've run. I don't really care about times, so I won't include them...maybe someday they'll become important to me. For now it's a celebration in completing and participating in an event to raise money, raise awareness, raise spirits!

October 17, 2010 my first 5K at the State Fair

December 4, 2010 Boy Scouts 10K at Peoria Sports Complex

January 16, 2011 P.F. Chang's Rock 'n Roll Half Marathon to raise money for PCH

January 29, 2011 London's Run at Schnepf Farms in Queen Creek

March 5, 2011 Run for Ryan House in Scottsdale

Dear Santa...Love, Sadie

Dear Santa,

I know it's barely March, but I have a special request. I want an ipad. I played with one today during therapy with Nancy and I really liked it. She showed me how if I touch it I can see a bunch of pretty colors, I liked that. It helped me use my vision. Then she showed me all the animals and I got to hear the noises they make. I liked the dog and the kitty, but I especially liked the birds. Nancy showed me a bunch of different birds and I heard how they all sound different. I wanted to touch it so badly and make the animal talk, but no matter how hard I tried I couldn't get my hand to do what I wanted it to. But, I know that if I had my own ipad I'd learn how to do it really quickly.

Nancy told my mom that it can also be a good communication device and we looked at a bunch of pictures of food. When I'm older, I'll be able to eat things like hamburgers and ice cream, and the ipad will help me communicate to my mom what I would like for lunch and dinner. So, you can see that it's not only to help me, but to help her. And my mommy needs all the help she can get with me, she works very hard all day to make me happy. She does a good job.

Santa, I know ipads are expensive, and I'm not sure you have the right technology in your workshop to make them, but I figure if I ask early, you'll have lots of time to save up for one. I promise I'll be a big girl and eat my food and poop everyday like Mommy and Daddy want me to. I'm sure they've already told you how good I am at sleeping in my bed all night. My mommy makes really good cookies and I will make sure she leaves some out for you on Christmas Eve when you visit our house.

Just in case you need any more convincing, here's a video of me playing with Nancy today with her ipad. You can see how much I like it!

Thank you Santa for reading my letter. I look forward to Christmas, even though it is still 9 months away. By then I won't be a baby anymore, and hopefully I'll be able to sit by myself...maybe even crawl! I can't wait to play with my new ipad!

Love, Sadie

Sadie's eating and gaining weight!

At Sadie's 12 month checkup, the doctor told me Sadie's too skinny. She had gone from a little chubbers, to skinny mini in about 6 months. At 6 months, she was just above the 50% in weight. At 9 months she had dropped to 25%, and by 12 months she was at zero. That's not good, doctors don't like to see that, especially in special needs children, ones who are already on the radar for feeding problems. At 9 months, when Sadie started dropping, Dr. Wendy called our state services coordinator and requested that we get the ball rolling on feeding therapy...we didn't actually see the feeding therapist until the week before Sadie's 12 month appointment.

As good as I know they are for babies/kids/people who really struggle or just can't eat, I am deathly afraid of a feeding tube. It would require surgery, and maintenance, and screaming, and it would break my heart a little. So when Dr. Wendy told me to come back in a month to weigh her, and if she hasn't gained she's going to send us to G.I., I freaked out. I know she didn't mean it to be, but to me it was a threat. A challenge not to go down the slippery slope toward G-tube.

It's hard work for Sadie to eat, definitely. And it's hard work, as well as a lesson in patience, for whoever is feeding her. But we tackled the problem head on, and immediately started feeding her 3 meals a day. And soon after that, we started keeping track by writing down what time she ate and what she ate each meal. We saw a pattern develop, she was eating at about the same times everyday. So we tried to stick to it. Then we started weighing her food and trying to get it up over a certain amount everyday. That prompted the addition of a meal, so now she's up to 4 meals a day. Then we moved to counting calories, and now I'm even writing down when she nurses. This might seem like a lot of work, but it's a lot less work than what comes with a G-tube...and she's gained over a pound in the last month.

We have our weigh in appointment on March 8, and I plan on bringing our food log with us. I think Dr. Wendy will be happy that Sadie has gained weight. I mean, she actually has a fat little belly and her face is filling out and when you pick her up, she feels solid. I just really hope that as she grows bigger and bigger her eating skills also improve to fulfill her calorie needs. There still may be a G-tube in our future...but we're going to fight it as hard as we can for as long as we can.
Here's a little video of Sadie having her feeding therapy. It's meant to stimulate and wake up her mouth so that she is more aware of it and can use it more efficiently when eating. It actually works really well. You can see how it makes her yawn when we do it though! What a good little eater she is becoming! We are so proud of her!

"retarded"

This word didn't used to offend me. And it still doesn't really...unless you use it to describe my child. I mean, she IS retarded, by definition. But, "special needs" just sounds so much more friendly. And we use "special needs" or "special" the same way we'd use "retarded" so what's the big deal?! I don't know.

The word "retarded" sounds so negative, I guess. I know when I use it, it's not to point out someone's positive attributes. Like, we watched that movie, "Dinner with Schmucks" and I asked Brian about Steve Carell's character, "is he supposed to be retarded?" I could have said "special," but "retarded" was more the word I was looking for.

However, when I'm talking about my own child, "special" seems so much more appropriate. Maybe it's because I want to focus more on how special she is instead of how behind she is. Maybe it's because it's more important to me what she CAN do and what she IS (like alive) than what she can't do (yet). Maybe it's because my heart breaks a little everytime I realize that the older she gets, the more she's going to realize that she's different than other kids, and she's going to get made fun of. She'll probably even be called "retard." I guess it'll be important to teach her what "retarded" means, and that it isn't necessarily a bad thing...it just makes you more special. Because she is special, and anyone who takes the time to get to know her realizes that.

Sadie's first swimming lesson

We met the most awesome lady today. Her name is Lana and she owns SwimKidsUSA. She was the teacher for Sadie's first swimming lesson. Why was she amazing? Because she loved Sadie. And I love people who not only know what Sadie's all about and are not freaked out by it, but they love her the moment they lay eyes on her.

From the moment we walked in the door of this place we were greeted with warm smiles and excellent customer service, knowing that they specialize in special needs kids, we kind of had an idea we wouldn't be stared at or made to feel like we don't belong. These people were used to special kids and they treated my special baby with the same attention as every other super cute child that came through the door...and there were a lot of them!

But Lana, she was something special. She told me she has a Masters in Special Education. When I signed up for lessons, her staff told me that she developed a whole special needs swimming curriculum. And she told me she has a special place in her heart for special kids. I liked her immediately. And I could tell she liked us.

She really worked a lot with Sadie's vestibular system, bouncing her in the water and giving her verbal cues before doing anything. We sang a lot of songs, and we moved around in different ways in the water. She understood when Sadie became overstimulated and knew exactly why. So, she backed off and we did different stuff. And when Sadie got the point where she was almost completely a disaster, Lana took this bucket that had holes in the bottom and let it "rain" on Sadie, knowing that that would calm her down. She even suggested that we come during the week and "practice" to get Sadie used to the sounds and things in that environment that could be overwhelming to her when she's not used to them.

So, we found this place by purchasing a Groupon, which gives us 4 Saturdays of lessons. If we decide to continue it's $70 a month (which isn't bad, really), but as she gets older, it'll likely get more expensive if we continue. However, Lana told us they have scholarship programs...that they like to reserve for special needs kids especially. The only hindrance right now is that it's a 30-40 minute drive to get there, but it's REALLY close to where we are looking to move. So we may continue once we find a house and move.

And, here's a video for your viewing pleasure of Sadie "swimming."