Easter Weekend

I love how holidays are a time to get out, get together, and just enjoy being with others. On Saturday, we went to our friends' house for an egg hunt and donuts (the rain flooded the park). Then we ventured to the primary Easter activity at the church. The kids had so much fun! They got to hear stories, color pictures, decorate Easter baskets, do relays and play games in the gym. Today, we went to church to listen to the wonderful messages and beautiful music in celebration of Christ's ressurection. Then, we had our friends the Rowleys over for dinner. It was so nice to have such a full and yet relaxing weekend. We are still feeling a bit under the weather (especially me), but I feel so fortunate that we were well enough to enjoy this special day.

Health Bummer

Everyone is sick right now. Gabe & Ari both have pneumonia in their right lung and left ear infections (talk about twins!). Isabella & Jake both have bronchitis. We all have horrible colds. Babies up all night, coughing fits till they puke, crying all day -- it's misery when our health departs the premises. Isabella also just recovered from a case of pink eye and impetigo (skin infection). ugh!

Get FREE Groceries with Donation

We are very excited about our first fundraising drive. We have found a great opportunity that allows us to give back to those people that donate to help Ariana. Starting now, anyone that makes a $30 minimum donation to HOPE for Ari will receive $300 or more in gift cards to your grocery store of choice.

• $300 in Free Groceries: Make a $30 or more donation and receive $300 worth of free grocery vouchers to your grocery store of choice (12 -$25 gift card vouchers) -- Silver Package



• $500 in Free Groceries: Make a $50 or more donation and recieve $500 worth of free grocery vouchers to your grocery store of choice (20 - $25 gift card vouchers) -- Gold Package

Here's how:

1) Make a donation to HOPE for Ari. You may either:

• Send check or money order (no cash please) to: HOPE for Ari 2783 E. Lantana Dr. Chandler, AZ 85286 OR
• Pay securely with credit card or Paypal account by clicking the 'Buy Now' button on the sidebar. Please include your name, address, telephone number, & grocery package selection with your donation (Silver, Gold, or No Package).

2) Once you receive your certificate by mail, register your certificate at ClaimYourGroceries.com & select your favorite grocery store to receive your free grocery vouchers (Any grocery store qualifies, including: Wal Mart, Safeway, Frys, Costco, Albertsons, Trader Joes, etc.). You may also register your certificate by mail.

3) Spend at least $100 each month at your selected grocery store, send in your receipts & a voucher to the rebate processing center to redeem for a $25 gift card each month (12 months - $30 donation or 20 months - $50 donation).

Please contact Elisa Taylor at (602) 881-4141 or ElisaMTaylor@hotmail.com or check out www.ClaimYourGroceries.com/Main/FAQ for more information.

<br /><center><a href="http://jaketaylorfam.blogspot.com/2009/04/get-free-groceries-with-donation.html"><img border="0" alt="Free Groceries" src="http://i279.photobucket.com/albums/kk148/BloggerBoutique/Elisa/donatecopy.jpg" /></a></center><br /><br />

March Milestones

This month, we've been so busy working on kickstarting HOPE for Ari, but I still have milestones to report! Gabriel & Ariana turned 25 months on the 19th, and Isabella just turned 6 months on the 27th. Gabe has learned how to use his fork and spoon. He sometimes still prefers his fingers, but I'm hoping I can instill table manners within the year. Speaking of manners, he has begun saying "thank you" (inconsistently still), "you're welcome" (even rarer), and "excuse me" (very consistently when he burps) -- so cute! Gabe has been doing a great job of putting puzzles together. His favorite puzzle is his fish puzzle (thanks Cindi!), which took me a solid 5 minutes the first time I tried it. It's confusing! Gabe throws those pieces in in 20 seconds or less. I think he might have it memorized though, which is equally impressive in my view :). Gabe has been a little bit of a... um... two-year-old lately. His favorite words are "no", "mine", & "owww". Of the three, "ow" (as in 'that hurts me') is his favorite and my least favorite. He uses it as a default word to mean no, stop, shut up, mine, leave me alone, or any other of these wonderful phrases. So, when we go out in public (as rare as those times may be), I get a lot of looks from people who must think I'm pinching my kid. It's great. But even that word, I have to say, beats the alternative which is his screaching. Gabe is still a screamer, and nothing is squelching the habit. No amount of ignoring, reprimanding, time-outs, or other reactions/non-reactions will obliterate this behavior. Anyway, I love him just the same, and he sure knows it too.

Aside from the deviance, Gabe's personality is really starting to shine. He has such spunk. He loves socializing. He is constantly requesting the "park", "parties", "friends", and "boys" (boys refers to his friends/cousins). I love how he is so confident around other kids -- I was shy as a child, and at times it was no fun. Gabe has his shy days too, but in general, he is always looking for ways to have fun. He is a great leader, and always seems to have a group of kids tailing behind him and copying his moves (he loves to play 'follow the leader' with the park kids, and he is always the leader). The other day, at the McDonald's play place, every time he took a break to get a french fry from Daddy (every 2 minutes or so), the entire group of kids on the playground would follow him and wait while he ate his fry, then follow him back to the playground. Hilarous! This is just so foreign to me, I find it so amusing. Lastly, we've been trying to look for an in to start potty-training, but I haven't found it. I bought him a whole box of Cars stickers, and I told him that they are for when he goes pee or poo on the potty. He gets so excited at the mention of those stickers that he rushes to the potty & sits right down (we pull off his pants & diaper). Trouble is, he just has never gone in it. I know he knows because we've gone beside him, we've ran the faucet, thrown water in his potty, etc. It hasn't happened yet. So, as soon as it does, I will be right there with the stickers, and I will soon thereafter committ to officially training him.

Ariana has been starting to babble more this month. I frequently hear her making consonant chain jabbering, which is so exciting! She has done this in the past, but it tapered off. I hope she continues to progress this time. Sometimes, she has even imitated a sound or two. She has said "baby" and "mama" each once upon request. I'm not calling them her words yet, because well, it was only once. She does, however, say "hi" on a frequent basis (not every time) but most times when I walk into the room or put Isabella beside her. I love it!

Prayers with Ari are so sweet. When we say it's time to pray (meals, church, bedtime), she smiles excitedly and clasps her hands together, then she waits patiently while the prayer is being said (smiling all the while), and when we say "In Jesus's name", she says "Aaha" (which is Amen). She's so precious.

Besides the accentuated stepping that I mentioned in the Anat Baniel Method post, nothing much has changed in the area of gross motor. She did, however, get to borrow a stander from her PT. She did really well in it, and liked it very much, so we're starting the process of getting one ordered for her. Standers are for Ari to practice standing and strengthening her leg muscles while in the correct positioning. This is good for her physical development (standing stregthens bones & muscle, corrects posture), as well as emotional (social interaction & inclusion), and mental development (seeing the world right side up while interacting with toys & people). We are also in the process of getting her a Augmentative Communication Device, which is a small computer to help speak for Ari. It also helps her with fine motor coordination and learning language. All assistive medical equipment is provided by the state, thank heavens.

Ari has started getting a little attitude this month too. Although she's still the sweetest girl ever, she has started to protest little things like drinking her milk or doing the bedtime routine. When she gets really angry, she curls her back like a kitty and tries to bite (usually my shoulder). Those moments of temper flare are still few and far between. And while biting is not allowed of course, the rebellion is her way of asserting her independence, and I can totally appreciate that.

At Isabella's 6 month well-check, she weighed 18 lbs. 2 oz (85th %tile) and measured 23 3/4 in. (55th %tile). This month Isabella has started babbling consonant chains instead of just cooing. When she does this, she opens her mouth really wide to speak -- it's so cute. I wonder if she thinks that's how we look when we talk.

Isabella is rolling all over the place. She and Ari can be on opposite sides of the room, but they manage to find each other in a matter of seconds. Usually, they both end up sucking on each other's limbs -- it's too funny, really. Bella is also starting to sit with support (with a hand hold or propped on her hand). It is still tricky for her, because of the uneven limb issue, but she'll get it soon. While sitting in her Bumbo chair, she gets really brave and twists all around to reach objects on all sides of her. Grabbing has become her new favorite thing to do. Bella is really beginning to assert herself with the siblings. She has begun to have tug of wars with them, which she looses, naturally. She's a great sport about losing though, and she doesn't quit trying.

Bella is on a pretty regular nap schedule now (2 1-2 hour naps), but in a schedule pinch, I tend to interrupt her naps in favor of saving the other kids theirs, because she's less crabby when she's tired then they are. She is still nursing and eating solids (baby food) about 2 times a day. Isabella is showing a wonderful funny side to her personality this month. She still loves bouncing in the jumper, putting everything in her mouth, being tickled, and being sung to. She really is a great baby.

HOPE for Ari: March Fundraising Stats

Since March 16th (when I officially initiated our fundrasing efforts for HOPE for Ari), we have raised $1,755!!! I can't believe how fortunate we are to have such a caring and compassionate community. I know we can accomplish our goal. Please continue to spread the message -- any amount helps, no matter how small. We are going to launch our 1st fundraising opportunity next week. We are very excited about it. More to come. THANK YOU!

Weekend in Holbrook

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).

Anat Baniel / Feldenkrais Method Therapy

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.

HOPE FOR ARI: Healing Our Little Girl

<center><a href="http://jaketaylorfam.blogspot.com"><img border="0" alt="HOPE for Ari" src="http://i279.photobucket.com/albums/kk148/BloggerBoutique/Elisa/button2.jpg" /></a></center>

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*)

We Won! Children with Special Needs Protected!

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.

Here is the link to Channel 3 clip: http://www.azfamily.com/video/?z=y&nvid=340992&shu=1

Here is the link to Channel 5 article & video: http://www.kpho.com/health/18912232/detail.html

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.