I read an article today (you can read it here) about ways to get your special needs child an ipad (because insurance won't pay for one) and one of the ideas was to fundraise. I had thought of this before, because of all the people who donated to my marathon to help the Children's Hospital. But it seems weird to ask for money for ourselves. The article made a good point, it said, "you are not begging for money, you are advocating for your child." And then it gave a couple of websites that help people fundraise.
I created a fundraising page for Sadie
Let me back up...a few weeks ago, Sadie got to play with an ipad at therapy. This was her first time being exposed to it, and you could tell she really liked it. (you can see a video of that here) Since then, our speech therapist has brought the ipad for Sadie to play with a couple more times. Just yesterday Nancy (the speech therapist) would touch an animal on the ipad for it to make a sound, then Sadie would touch the same one. Of course she didn't always get the right one because it's still really hard for her to control her arms/hands, but it was amazing to see my daughter actually copying!
A month or so ago we applied for an ipad through a grant provided by Babies with ipads. This blog/website is working and fundraising hard to be able to give special needs children ipads to further their learning and development. We were asked to answer a number of questions about Sadie's needs and how we felt an ipad would benefit her. We didn't win. However, it is sort of bittersweet because friends of ours (that we know from Foundation for Blind Children) did win. I think what Babies with ipads is doing is fantastic and they've already become such a great resource, that any money we happen to raise above and beyond the purchase price of the ipad, I want to donate to Babies with ipads so that they can provide another child with one.
So, if you are interested in helping Sadie buy an ipad, please consider giving. Any amount will help and will be appreciated. And of course frequent blog updates will be included with the ipad purchase!
You can click below to give, or use the widget on the right side of the blog homepage. And don't be too shy to tell your friends and to introduce them to Sadie via this blog! We love telling the world about our biggest blessing!
Sadie has been doing feeding therapy/speech therapy for a couple of months now. She's been working on becoming aware of her mouth and how to use it more efficiently. So, I use that Nuk brush with her in the mornings before breakfast, like you saw in the video of her eating. And when the therapist comes she does a lot of the same stuff, but with different tools; like a little vibrator, or a vibrating spoon, or a little sponge. Today for therapy, Nancy asked Sadie to choose if she wanted her to use the Nuk brush or the green sponge. I had no idea how Sadie would react to a choice like that, since she has a really hard time using her arms. She can't reach out and grab her choice. But you'll notice in the video, Sadie gets her right hand going, clearly choosing the sponge (maybe she could see it better, maybe she knew the difference, I don't know), I know this was a deliberate choice because Sadie almost always (90% of the time) tries to reach with her left hand. This made me start thinking about how we treat Sadie. I always say I think she's smarter than we give her credit for. She's trapped in this deficient body, but her mind is ahead of wat she can do physically. Yet, all day everythin she does, she eats, she looks at is dictated for her. I think it's time we start having her make some of her own choices, like in this video. Maybe she will shock us with the choices she makes and we will learn some things we never had any idea about! The video shows therapy with the sponge, then with the Nuk brush, then you'll see Sadie make her choice.
This was my Facebook status just now: "we just completed our 10th car ride in a row with NO SCREAMING! WHAT?! we're also on our 4th day without a meltdown!! Who is this big girl? ...and can we keep her?"
Last Wednesday seems to have been our last bout of car screaming. I don't know what has changed...the baclofen (more on this in a minute)? Her vision? Growing up? Does it really matter?! The fact is that I'm really enjoying quiet car rides.
A week ago we started weaning Sadie off the baclofen. Baclofen is a muscle relaxer that is often given to people with CP. She started it when she was 6 months old because the concern was that she was so tight in her legs all the time that it was stunting her hip development. And it really helped for a while, but she seems to have grown out of her high tone (tightness), and I'm not sure there is much concern anymore about her hip. Sadie's PT noticed recently (after our last go-round of movement therapy) that Sadie didn't have a lot of control over her body and suggested we ask Dr. Wendy about weaning her off the baclofen. The idea is that without the medicine causing her to be relaxed, she might gain control of her body and be abe to use it more effectively. This is exactly what we are seeing happen.
The last 3 nights Sadie has woken up around 5:00 or 6:00, I know this because I can hear her in the monitor. Not crying, just laying there clicking her tongue or "talking." She has even been able to put herself back to sleep in these situations. I am having a hard time sleeping during this time because I am waiting for the crying to start any minute. But it doesn't. I end up going to get her when it's time to wake up and she's usually just laying there all happy and smiley!
Sadie has not had a meltdown for the last 4 days. She has been happy with no crying for 4 days straight!! She has eaten everything I've put in her mouth without crying. She has laid on the floor and played by herself...even on her tummy. She has sat in Brian's office while he works and I sew and not said a peep. Who is this girl?!
But for the Grand Finale...Sadie took a nap in her bed for over an hour today!! I knew she was tired after therapy today, so I decided to experiment and put her in her bed with the pacifier. Suck suck sleep. I was literally there for less than 3 minutes. I didn't know what to do with myself. I didn't want to start anything because I was SURE she was going to wake up any minute...but she didn't. She slept for 70 minutes! What in the world?!
My only thought on all of this is...FINALLY!! I finally have the baby I was supposed to have, one that I don't have to hold all day and argue with to eat her meals. It gives me hope that we have turned a corner and I can't wait for Grammy to come next week and love on this new baby!
Sadie saw the eye doctor today. He was impressed with how much her vision has improved and that she was able to be there without being so sad (last time turned into a screamy meltdown). Sadie's vision was actually assessed this time!
It was determined that 1. Sadie needs to continue to become more consistent with her vision, and 2. we need to work on aligning her eyes so that they are able to work together more. As of right now her left eye is weaker and tends to drift outside a lot.
There was mention of surgery in the future. This surgery would adjust the muscles in her eyes, the ones that keep your eyes aligned and allow you to track an object, that way she wouldn't need to work so hard to use her vision because the eyes would be straightened for her. Right now she is spending a lot of energy pulling her eyes together, which means she has less energy to spend actually using her vision.
However, this surgery would not be beneficial until she uses her vision on a more consistent basis and is able to track better. So for now we will work on strengthening that left eye as much as we can. We are going to start patching Sadie's right eye (so her left has to work independently) for about a half hour each day. We will do this for 2 days in a row, then we will patch her left eye for one day. The reason we still patch the left one day is that we don't want to stunt her brain development by only allowing one eye to get stronger.
We will do this for 3 months or so and then we'll go back and check her again. Hopefully we will see Michelle for a movement lesson between now and then and that will greatly improve her vision as well. Either way, I hope we will continue to see improvement.
And I will definitely post some pictures of our patching experience!
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
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!):
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?)
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
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!
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!
