We went up to spend the weekend with Jake's family in Holbrook. Our sister-in-law, Jacqueline and our two neices, Margaret & Katherine, were visiting from California (Jake's brother Rob couldn't make it). Jake's other brother Ryan, his wife Chantelle, and our two nephews Brayden & Trevor now live right next door to Jake's parents. It was a great weekend, and we had a lot of fun spending time with each other. I love it that my kids have cousins their age -- something I always missed. Grammy planned an early Easter egg hunt for the kids (it was their first). They went buck wild and ate way more than their share of sugar. It would be nice if every weekend were like that (sans the sugar).
Last week, we took Ariana to three sessions of Anat Baniel Method therapy http://anatbanielmethod.com/. It was a very interesting and pleasant experience. The theory behind this therapy is to create new neural pathways through movement (basically rewiring the brain). We have seen subtle but notable improvements. For instance, since the therapy sessions, two of three of Ariana's state therapists have spontaneously mentioned how Ari's right hand seems very relaxed. Secondly, Ariana's "stepping" while supported has gotten better. Her steps are higher and strides are longer. Ariana also seemed really happy during and after the session -- giddy even. For now, we are not planning any further sessions unless dramatic results emerge, because we are focusing our efforts on raising funds for Stem Cell Therapy, but it was well worth the sessions we did.
Many of you know our little angel, Ariana. If you know Ari, you know how she is a sweet, enchanting, and loving spirit who shares with everyone her brilliant smiles, her enthusiastic waves, and her joyous laughter. You also know that she has Cerebral Palsy, and hard as she may try, she cannot live the life of a regular little girl.
Ariana and her twin brother, Gabriel, were born almost seven weeks prematurely via natural delivery on February 19, 2007. Ariana was tiny, but she was as healthy and as perfect as she could be. After the birth, all the doctors reassured us that the twins were faring very well and that they would go on to live healthy, normal lives. On Ari's twelfth day of life, all of that suddenly changed. Ariana began seizing uncontrollably, and she had to be air-evacuated to St. Joseph’s Hospital NICU in Phoenix, where it was discovered that Ari had suffered a Grade III brain bleed, a stroke, and other life-threatening complications. Ariana’s MRI showed that she had endured serious irreparable brain damage due to the lack of oxygen to the brain resulting from the stroke. Assuming she survived, the doctors told us that there was no treatment for what she had endured, that her brain was permanently scarred, and that the best we could do was to hope things turned out better than predicted. The following months were very difficult and fraught with a constant regimen of medications, tube feedings, machines, painful reflux, food refusal, daily therapies, and constant doctor appointments. By the grace of God and with the support of our community, we got through the most challenging time in our lives. We grew closer as a family and learned how just how precious those simple moments and healthy days really are.
Our baby Ariana is now two years old. She has brought immeasurable joy and love in our home and has made each day in her presence a pleasure. Ariana is a hero who loves life and hardly ever complains even though her road is arduous. However, at two years of age, Ari is not crawling, walking, talking, or moving freely. Her own body betrays her. Ariana is aware of her limitations, and she desperately struggles to overcome them. Our prayer is that God will open the doors to give her the opportunity to one day enjoy regular life experiences like other children.
We believe that Umbilical Cord Blood Stem Cell Therapy may be one of these open doors.
Umbilical Cord Stem Cell Therapy is the administration of stem cells taken from the umbilical cords of healthy live newborns in an attempt to restore damaged cells and tissue. Currently, the United States is still in the process of conducting research trials with cord blood stem cells. This technique most likely won’t be made available to the American public for a number of years. However, even early U.S. research trials have yielded remarkable results for many neurological conditions, most notably, Stroke and Cerebral Palsy.
Abroad, however, these medical techniques have already been tested and safely practiced for many years. In China, hospitals report over an 86% success rate for Stem Cell Therapy in patients with Cerebral Palsy. When Ariana was first diagnosed a stroke victim, Jacob and I made her and each other a promise that we would go to any lengths to give her the best medical treatment available and the best quality of life possible. In accordance with that promise, Jacob and I have decided that we are going to take Ariana to either China ( http://www.stemcellschina.com/ ) or Mexico (http://ramirezdelrio.com/) for stem cell therapy (we are still researching locations). This treatment is basically achieving what was once thought to be impossible – to heal the brain.
Stem cells work in amazing ways. An umbilical cord stem cell is a non-differentiated cell that that can give rise to any number of different types of cells, including healthy brain cells. The results that Stem Cell Therapy can potentially yield are nothing shy of miraculous. Many children with Ariana’s condition have gone from previously nonverbal to talking, immobile to crawling or walking, spastic (overly tight) to mobile and loose, even in a matter of mere months. Most patients see some results in as little as 24 hours post-treatment. Down the road, this treatment may mean the difference of Ariana living independently versus relying on others in adulthood. This may mean walking and having an active lifestyle versus being confined to a wheelchair. It could mean conversing, getting an education, and having a family and career, versus being unable to have any of those normal life experiences which so many of us take for granted. While this treatment, like anything, is not considered a cure-all, it is the closest thing that there is! We believe that Ariana deserves the chance to be the healthiest, most whole person that she can be.
The cost of Stem Cell Therapy can run $30,000. Jacob and I would gladly save every spare penny over the course of our lifetimes in an attempt to accumulate enough funds to take our baby girl for treatment. But, unfortunately, Ariana does not have the time to spare. Stem cells are most potent and successful in children ages 4 years and under. The critical window for cell repair is quickly closing, and we’ve only just begun the process. So, with hesitant but eager hearts, we are asking for those who are able, to donate whatever small amount you can spare to help give Ari a chance at recovery and a full life. We are setting a goal of $40,000, which will cover the cost of treatment and airfare. If we can get 2,000 people to donate just $20 a piece, we will reach our goal! Please pass this message around – you never know who might be looking for the chance to help change someone’s life for the better.
On behalf of all our family, I want to express our gratitude for all of your continued emotional support. During challenging times like this, we realize how fortunate we are to have such a wonderful family, friends, and community. We could not have made it this far without all of you. Please continue to pray for a miracle for Ari to be seizure-free and to have a normal life one day. Our humble thanks from our family for your generous donations, and more importantly, for helping Ari’s light shine that much brighter. Your Friends, Elisa & Jacob Taylor
Donations can be submitted through Paypal or credit card via the Chipin widget on our blog's sidebar or you can send check or money order to:
Ariana Taylor 2783 E. Lantana Dr. Chandler, AZ 85286
If you would like to be a part of the fundraising effort for HOPE FOR ARI by volunteering to spread the word or participate in organizing fundraising events, please contact me by email at ElisaMTaylor@Hotmail.com or by phone at (602)881-4141.
(www.jschomaker.com *mention Hope for Ari upon booking*)
You know, there's an old Yiddish saying that goes, "God slaps you on one cheek and kisses you on the other." I wrote a post not too long ago about how Arizona had decided to cut out the Early Intervention program for children with disabilities because of lack of budget funds. Remember the lawsuit for which I wrote a deposition and was serving as a plaintiff against the State of Arizona, the one I doubted we even had a hope of winning, the one that presented our one and only chance of getting the budget cuts for services of children with special needs repealed? Well, we had a big success today, and we won that lawsuit outright, and babies throughout the state are getting their services reinstated.
Today, our family attended the press conference at the State Capitol. It was very exciting to be influencing public policy, and in particular, to be advocating for something so close to my heart. It is a wonderful feeling to know that, even in a world where it seems like one can be drowned out by the opposition and overwhelmed by bureaucracy, your voice can still be heard. So far, news stations Chanel 3 and Chanel 5 have covered the story in addition to several valley newspapers. I will post a video of the segment as soon as I get it.
In front of the Capitol Building with the CEO & Vice President of TCH (The Center for Habilitation) and Monica Attridge for AAPPD (an advocacy group for privder services).
Here is an excerpt from the official Press Release:
"Judge Stops Drastic Cuts in Disability Services by DES"
On February 13, 2009 the Department of Economic Security (DES) announced the most severe cuts in services and provider rates since the community system for people with disabilities was founded 30 years ago. More than 4,000 people with developmental disabilities were to be removed from service effective Friday, March 13th, ranging from 2,000 infants in early intervention to adults with severe disabilities, many of whom had received services for over two decades. The already fragile network of service providers was hit with a 10% rate reduction in payment for services even while a recent DES study indicated that provider rates were already substandard.
On February 27, providers, advocates and developmentally disabled individuals and their guardians from various parts of the State sued the State of Arizona and DES in Superior Court over these cuts. They asked the Court for an immediate injunction to stop the suspensions of services and the rate cuts that would jeopardize the continuing availability of essential services. At a preliminary hearing, the Court heard evidence about infants and toddlers who are developmentally delayed and will lose essential services at a critical time in their lives; about disabled adults who will lose personal care services that are essential for their immediate safety and welfare; and about service programs that either have or will have to close their doors if these cuts are permitted.
Today, Judge Joseph B. Heilman enjoined the State of Arizona and DES from making those cuts. His ruling is retroactive to March 1st. The ruling notes that, in the State's rush to fix its budget problems, it acted so hastily -- without public input -- and that it ignored the immediate safety and welfare of some of its most vulnerable citizens. The State's actions threaten to undermine the very network of services that it designed to serve the thousands of program beneficiaries and their families. And in its haste, the State most likely ignored the law as well.
Clients, their families, advocates and providers will hold a rally at the State Capitol next Thursday, March 19th to emphasize the effects of the cuts proposed.
It's been a busy month in terms of milestones, but really, what month isn't? Kids just grow up so quickly, and they are always learning something totally new. A month in a baby or toddler's life must be like what, a year in an adult's life when it comes to learning and novel experiences? In any case, it's amazing.
Gabriel and Ariana had their 2 year pediatrician check-up. Both kids are growing well. Gabe is 30.5 lbs. and 34 inches (80th and 40th percentiles respectively). Ariana is 28.7 lbs. and 33.5 inches (75th and 50th percentiles respectively). I'm starting to vaccinate the kiddos again. Isabella hasn't gotten any shots so far (I'm going to get a couple next month & start on a revised schedule), and Gabe & Ari got their first set in a while. I stopped vaccinating the twins at 9 months old just to be cautious, but they've since turned two, and with preschool coming up and a lifetime of globe-trotting ahead of them, it's high time we got them caught up.
Gabriel has lots of new stuff in his repertoire this month. In his language development, he has an expressive vocabulary of between 500 and 1,000 words. He knows words that I have no idea how he learned, like "igloo" and "volleyball", referring to the correct objects of course. He has begun speaking in 3 word sentences, the first of which I remember was "Baby eat banana," (as I was feeding Isabella a banana). And of all the many wonderful vocab words Gabe is picking up, of course his favorite has to be "Nooooooooo!". Typical two year old. Gabe is now learning how to count to twenty. He knows all the numbers, but he sometimes skips a couple in his impatience. Gabe has been able to read a couple sightwords like "cat", "Gabe", and "hi", which he picked up from the Your Baby Can Read DVD series. Speaking of DVDs, Gabe's new favorite is Disney Cars. He is obsessed with this movie. It is cute but difficult at the same time. For example, whenever anyone mentions a street near us called 'McQueen', Gabe gets really hyper, thinking that we are talking about Lightning McQueen (duh!), his personal hero (next to Daddy of course).
Gabe got a potty from Grandma for one of his birthday presents. He has begun to sit on it at his request. He hasn't actually done anything while sitting on it. I haven't been the best encourager in this department. I am just not ready to do the every 30-minute thing yet. We'll get there before preschool, and that's all that matters. After all, isn't early potty training supposed to be for my convenience?
Gabe did his first complete sumersault all by himself this month. :)
My personal favorite of Gabe's milestones this month is the singing. Gabe has been singing songs with tune and tempo and lyrics. It's literally music to my ears. Of course, he's no Andrea Bocelli, but it's just the cutest thing ever! He likes to request the songs we sing, "Sing song. Black sheep." His favorite songs are 'Skiddamarink', 'If You're Happy & You Know it', and 'Head Shoulders Knees & Toes'. He has to sing 'Apples & Bananas' every time we eat one of those fruits.
Ariana has been excelling this month in gross motor, and so many people have been mentioning how strong she's gotten. Amongst her achievements are bench sitting for short periods, pulling from a tall kneel from a sitting kneel using the ottoman, pulling to stand from bench sitting with help, and stepping while standing with assistance. For all of these new skills, Ariana still requires a lot of assistance, but this is the first time we've ever seen her attempt these feats at all. For many people, this might seem like not such a big deal. But for our family, it is! We are so proud of Ariana and how she is just so determined to grow and progress. She is such a bright light, and nothing will stop her from shining.What is probably Ariana's biggest accomplishment this month is pivoting on her tummy. What I mean by this is, while Ariana is laying on her tummy, she can essentially belly crawl in a circular direction (both to the left & right) to position herself facing whichever way she chooses. I've mentioned in previous posts that Ariana has been working on this. She has finally mastered it, and she moves around in circles like this really quickly. Now, if she could just move foward -- she would be overjoyed.
Also new this month, Ari has been trying to do the hand gestures to certain songs -- in particular, 'If you're happy & you know it'. She does the clapping, stomping, and says hooray ("aaaay") while raising her left arm. She anticipates the appropriate times in the songs to do the gestures, and it is so sweet. In some ways, she's just like any other two year old.
Ari has been practicing using a fork and spoon this month. She's getting really good at it. I still have to stab things for her with the fork, but she scoops pretty well with the spoon, and she can get the food in her mouth. Her eating has improved (for the moment) because of the novelty of getting to use utensils and a plate at meals. I need to mention that Ariana has been getting all her liquids from the sippy cup (no bottles) for at least three months, but I forgot to tell about it back then.
And what's not new for Isabella this month? Isabella is rolling from tummy to back and back to tummy in both directions and has been since the beginning of the month. She loves to grab at her toys and mouth whatever she can get her one strong little hand on, including her feet. When Isabella is on her tummy, she sometimes pulls her knees under her as though she's thinking about moving somewhere. Bella's favorite activity is definitely not sitting or laying around though -- it's bouncing. The girl loves to bounce! She will bounce in her jumperoo for a seriously looong time, happy all the while. I thought that four months might be a little early for that, but Bella can't get enough.
Speaking of early, I had no intentions of starting Isabella on baby food yet. Her pediatrician said that she's in no hurry to see Bella eat solids, because she seems to be growing fabulously on breastmilk alone. But Bella had other plans. Since she turned 4 months, Isabella seemed to be somewhat anxious during family mealtimes. Her gaze fixated on my fork, visually tracking it back and forth from plate to mouth. She was very aware that we are eating, to say the least. So I offered her some baby oatmeal with breastmilk, thinking that she would reject it (like the twins did the first 100 times I tried), and that would be the end of that experiment. Well, that's just one more way that Bella and the twins are not so alike. Let's just say that it was love at first bite. Isabella is a pleasure to feed! This baby gets so excited in anticipation of the spoon, opening her mouth in a little kissy face O-shape -- adorable. This month, she's had baby oatmeal, baby peas, baby squash, and real banana, and she's loved it all. We're not on a regular schedule yet, but she typically gets one solids meal a day. And just in time for baby food, Isabella has begun razzing -- spitty bubbles galore.
Socially, Isabella has been babbling consonants. My personal favorite is "mamama". She does this now in addition to her squeals and coos. She has a tummy time mirror, and she thinks that her reflection is just hilarious. She "pops up" to surprise herself in the mirror and cracks up laughing every time. Likewise, she has started to love playing peek-a-boo. Gauranteed chuckles.
This month, Isabella has started demanding nursing prior to taking naps. One more reason she'll be attached to my side until she's a toddler. But, strange thing is, I don't mind a bit.
I've said it before, but it bears repeating that both of my twins have received government-funded therapy services since they were babies. Ariana acquired these therapies because of her obvious diagnoses and developmental delays, and Gabriel was formerly delayed (due to his prematurity) and has been able to catch up to age level (and even surpass it) thanks to his therapists. Right now, Gabriel receives Physical Therapy (PT) and Developmental Special Instruction (DSI). Ariana receives PT, DSI, Occupational Therapy (OT), Speech Therapy (SP), and has qualified for Feeding Therapy (FT). Gabe's program is state funded and is known as the Arizona Early Intervention Program (AzEIP), and cares for children between birth to 3 years of age. Ariana's program is mostly federally funded and is known as Long-Term Care (Title 19) and cares for individuals with serious diagnoses from birth to age 19.
As of the end of March, the grand state of Arizona will be the first state in the nation to cut all state funded therapy services for babies (0-3 years old). AzEIP will be a thing of the past. Gone. Finito. Gabriel's services will be cut. This is not good, but it's not devastating, in and of itself, seeing as though Gabe has been making great progress and was getting ready to graduate out of the program anyway. But to think that this cut will leave Ariana unscathed is totally wrong.
Here's where it gets bad:
1) Ariana's DSI therapy is state funded. Every child's DSI is state funded. This means that every child, no matter how delayed, no matter how severe, is getting this crucial service cut, even if they are considered Title 19. Ariana is out a valuable therapy that will not be reinstated. We are also losing a beloved therapist, and she and so many therapists like her are out of a job. DSI has been one of the most beneficial therapies for Ariana (and Gabe), and has served as a parenting coach and invaluable support system for me, to say the least.
2) TCH is the company that employs Ariana's PT (as well as her DSI & SP). Since the budget cut, TCH and so many other companies like theirs is having to close its doors and shut down their program altogether. They simply cannot run a business without the state funded portion of their clients (which makes up the majority of their reimbursement). Therefore, even though Ariana's federal service funds are still available, the providers are not there to offer these services anymore. At the end of this month, Ari's PT will be out of a job, so she will need to decide if she wants to and is able to find a job with another company that is managing to stay afloat under these turbulent conditions. If and when that be the case, we will transfer service to her new company. If not, Ariana will be out her Physical Therapist as well.
3) Ariana's OT is the owner of a therapy provider company. She is also in a position to decide whether or not it is possible for her to keep her business afloat, given the sudden and drastic budget cuts. If (like so many others) she can't, Ariana will be out her Occupational Therapist.
4) The fact that Ariana won't be getting the feeding therapy that I've been fighting for and was recently approved is just moldy icing on a stale cake.
5) To say the least, Ariana and so many other children with special needs in our state are having their much needed therapy services terminated or interrupted. This vulnerable population of children is losing medical care, their parents are losing knowledgeable coaches, their families are losing valued relationships, and the providers are losing their jobs. This is happening by the thousands. It's simply NOT okay. There are Third World countries with better programs for children with disabilities (and, no, I am not making this up).
Currently, I'm a plaintiff in a lawsuit filed by TCH (The Center for Habilitation) against the State of Arizona. Wish me luck, right? It is an attempt to put a hold on the budget cuts for further review, seeing as though they are IN VIOLATION of Federal requirements!There was a rally at the State Capitol to protest the cuts last Thursday. People are writing their legislators left and right. The cuts have passed, so the only hope of reversing it is if the lawsuit is successful. So, although it may be a mute point, we are fighting the good fight anyway.
We picked up Ariana's AFO's (leg braces) last Thursday after two months of waiting for them. Her new insurance plan with CRS (APIPA) has been a big pain in the butt with giving authorization for various medical equipment etc. (hence the reason for the delay). I was beginning to worry that she would outgrow the AFO's before she even got a chance to wear them. Not the case though. They fit fine, and she's been adjusting really well to them. We have been putting them on her after breakfast and taking them off for nap. Afer she wakes up from nap, she wears them until bedtime. The AFO's haven't left any real red marks on her legs, although they're always puddled with sweat when we take them off (she wears Coolmax socks which have sweat wicking properties so her socks stay relatively dry). Her AFOs also came with cute special sneakers (size 8) that offer support and traction for standing. She's a real sport, and sometimes I think she might even like them. We refer to them as "Ari's special shoes", and I think that they make her feel... well, special. I take this with a grain of salt right now though, because the weather has been beautiful, to say the least. In not much more than a few months, we'll be seeing temperatures rising to 120 degrees F (and above) if you can believe that. Speaking for myself here, I hate having to wear anything in the Phoenix summertime. I can't imagine having to wear plastic leg braces and knee socks and sneakers all summer long (except for when playing in the water). But, we'll just play it by ear. Like everything, these are definitely not a cure all, so I'm not going to stress about them too hard. What I do like is that now Ariana is permitted (encouraged even) to practice standing. She loves this, and even likes to pull herself to a stand from sitting with a little help. Now is the time to strengthen those leg muscles for crawling and walking.
Cute story: Ari and Gabe were at the park with Brooke the other day. An older girl commented that she really liked Ari's shoes (what's not to like? They're dalmation spotted!). Gabe then proudly piped up, pointing "Yeah. Ari's shoes. Ari's shoes!" acknowledging that yes, indeed they are cool shoes and he is proud to be her bro. At least, that's what I got out of it. ;)
Hi! I'm Elisa. I am a stay at home mom of four beautiful children; Gabriel, Ariana, Isabella, and Liam. I am a mom of a daughter with Cerebral Palsy and epilepsy. I also know a thing or two about limb differences, because I have another daughter who was born without a left hand. My husband and I have been on one whirlwind adventure, beginning with fertility struggles, children with health issues, parenting a child with special needs, advocating for things we never knew mattered to us until they did, and most recently, remodeling and moving into our dream home in the country. In my free time, I like taking photos, gardening, making delicious things, throwing parties, and going on adventures. I can make anything an adventure. I love like nobody's business, and I never, ever forget to appreciate just your ordinary, run of the mill, everyday miracles.
We went up to spend the weekend with Jake's family in Holbrook. Our sister-in-law, Jacqueline and our two neices, Margaret & Katherine, were visiting from California (Jake's brother Rob couldn't make it). Jake's other brother Ryan, his wife Chantelle, and our two nephews Brayden & Trevor now live right next door to Jake's parents. It was a great weekend, and we had a lot of fun spending time with each other. I love it that my kids have cousins their age -- something I always missed. Grammy planned an early Easter egg hunt for the kids (it was their first). They went buck wild and ate way more than their share of sugar. It would be nice if every weekend were like that (sans the sugar).
Umbilical Cord Stem Cell Therapy is the administration of stem cells taken from the umbilical cords of healthy live newborns in an attempt to restore damaged cells and tissue. Currently, the United States is still in the process of conducting research trials with cord blood stem cells. This technique most likely won’t be made available to the American public for a number of years. However, even early U.S. research trials have yielded remarkable results for many neurological conditions, most notably, Stroke and Cerebral Palsy.
Gabe is now learning how to count to twenty. He knows all the numbers, but he sometimes skips a couple in his impatience. Gabe has been able to read a couple sightwords like "cat", "Gabe", and "hi", which he picked up from the Your Baby Can Read DVD series. Speaking of DVDs, Gabe's new favorite is Disney Cars. He is obsessed with this movie. It is cute but difficult at the same time. For example, whenever anyone mentions a street near us called 'McQueen', Gabe gets really hyper, thinking that we are talking about Lightning McQueen (duh!), his personal hero (next to Daddy of course).
What is probably Ariana's biggest accomplishment this month is pivoting on her tummy. What I mean by this is, while Ariana is laying on her tummy, she can essentially belly crawl in a circular direction (both to the left & right) to position herself facing whichever way she chooses. I've mentioned in previous posts that Ariana has been working on this. She has finally mastered it, and she moves around in circles like this really quickly. Now, if she could just move foward -- she would be overjoyed.
