Helping Babies- It's a good thing

I have some great friends. Namely, Heather and Scotty Adams. They are the greatest friends one could ever ask for. Recently, when asked how I knew someone, I had to explain that Scotty is like the center of a bike tire, his relationships radiating out from him like spokes. He knows so many people. And then, somehow, we all come to know each other. He has a huge circle of friends, and I'm so glad to be a part of it. 

But this isn't exactly about him. It's about his son, Aiden. 

Aiden was born at 24 weeks. Aiden was only a pound and a half at that point. He stayed at Children's Hospital for a while. There are beds that can help the babies have a greater chance of survival, called Giraffe-OMNI Beds. Baptist has some, but not enough to help all the babies that need them. Scotty saw the need and acted. He had an event that he helped spearhead – Craws for Paws. He changed the name of the event to Craws for a Cause and has been filtering the money into the Baptist Foundation fund to buy more beds. 

Here is Aiden before getting a Giraffe-OMNI bed

These beds are very expensive- 30 thousand dollars each. His son was transferred to Baptist when a bed became available and it saved his life. Aiden is now 2 1/2 years old and doing well. Scotty directly attributes the survival of his son to the bed and wants to make sure that every premature baby that needs a bed can have one. 
So, with that, I invite you to Craws for a Cause. I am a co-chair for the event. I'll be running around helping make sure everything runs smoothly. This year, the event takes place Friday, May 6. Tickets get you access to all the beer, crawfish and fixins (and hot dogs) that you want. There will be live music by Boom Kenetic. You can purchase general admission tickets in advance for $45 or $55 at the door. (I'll warn, last year the event sold out and many were turned away at the gate.) Also, individuals and corporations are encouraged to purchase VIP tables. These tables seat 10 people and cost $1,000. The VIP tables will have volunteers (The Central Arkansas Roller Derby girls) bringing beer and craws, so you don't even have to get up. These tables are positioned near the music and will have a special VIP entrance to avoid the general admission line. 
This is a wonderful event– it's tons of fun, the food is great and you can't find a better cause. 

As you can see, Aiden is doing well with his big brother, Parker.

This story could easily be one of heartache. Many parents don't have the happy ending that the Adams' got. But, you can help the premature babies of Arkansas. And, you get all the beer you can drink. 
Sounds like a win-win to me. 

An update

Several people have been asking, "What's going on with Kacie?"

Well, first, I want to thank everyone who helped out. My tiny little blog got over 300 visits in one day when I asked for help! Which is huge! I had friends, friends of friends, friends of people who barely know me all call, comment, message or DM me with offers of help.
So here's what I found out:
Independent Living in Conway- They have openings, but they require each person to have the waiver.
Friendship Care in Bryant- They had an opening, I missed it by a few weeks (!) but they think they might have another soon. She would be so close and the people there seem really nice. Also, because Kacie is high functioning, they think they could take her without the waiver but she would need to be on the waiver waiting list. Kacie is currently the first and only person on this waiting list.
Pathfinders in Jacksonville- They have additional locations, including Bryant, Benton and Haskell. They also said they could take Kacie without the waiver but on the list. They don't know when they might have an opening. Kacie is also the first person on this waiting list.
Our Way, United Way and the Civitan could not help. They were either full, no longer taking applications or do not offer any kind of housing.

The waiver. This is the community and home-based waiver through Medicaid that would pay for Kacie's services. The waiver process is a bit long and requires she have a psychological evaluation and a doctor's check-up. Kacie had an eval but it was July of 2005 and they are only good for 5 years (Of course), so I have to have a new eval done. The first place I was referred to will not take Medicaid as payment for individuals over the age of 21. (she's 25) I called the second place (UAMS) and was told that there is a waiting list (of course) and that since she is on medicaid, she has to be referred by her PCP. So I have to find her a PCP, take her for a visit and have them refer her before I can get her on the waiting list for an appointment. Once all the waiver paperwork is completed and sent in, Kacie will be placed on 'the list.' From there, it could take up to three years for her to get approved. (Or so I have been told by numerous people). And, from what I hear, the list is only going to get longer. There are some things happening in Arkansas right now (forgive my ignorance, I have no time for the news) they are in the process of shutting down some of the Human Development Centers. These children/adults will be displaced and will need housing. They will be bumped to the tops of all the lists, else they will be homeless. From what I understand this will be happening in the next six months.
For many places, the waiver is required. There is a difference between how some of the housing is paid and subsidized. Some requires the waiver. Others are government subsidized so they only charge the residents 30% of whatever income they have. This was how the Easter Seals housing was (the first that I ever looked into) so I originally had no clue about the waiver.
Now, I did find another place back in the beginning of my search, Cerebral Palsy Group of Arkansas. They have housing but no day program. But, I already have Kacie enrolled in the Easter Seals day program. I got a call last week from CPG asking if Kacie still needed a place. They will have an opening in a few weeks. It can be Kacies. But, they want a current psychological (see above) to make sure that she can handle living on her own. So I'm trying to work through that as quickly as possible. I hope that my friends at Easter Seals know of another place where I can get it done so that we don't have to wait on the list at UAMS.
So that's where we stand. There could possibly be a light at the end of the tunnel. Either way, let's all keep our fingers crossed that Kacie comes to some kind of resolution soon. She desperately needs a structured day program to help her.

I need help

Some of you are aware of this, while [I assume] some of you don't know and may not even know me. This might be your first time visiting my blog. If so, "Hi! I usually talk about cakes, my house or whine about stupid stuff." I promise I'll get back to that tomorrow. Until then, I need some help.

I have a younger sister. She's 25 years old and has Turner's Syndrome. It's a genetic disorder where the symptoms can range anywhere from mild systemic cosmetic issues (looking at her face you can see she has a genetic disorder. She doesn't look like someone with Downs Syndrome, but similar.) to more severe heart issues (she has that too. Pacemaker at 18). In most cases, these women (it only affects females) live normal lives, but in Kacie's case, she also has issues with her mental capacity. She has a low IQ. Not so low that she can't function, but low enough that she has trouble grasping 'big picture' issues. She can cook, knows how to measure out ingredients, but wouldn't know how to convert from teaspoons and tablespoons to cups. (OK, I don't know how to do that. Bad example) She knows how to use money but doesn't understand that when the money is gone, she can't keep writing checks. (Fine, there are plenty of 'normal' people who don't get that either.)

Kacie lived with her mother for most of her life. Six years ago she went to stay with her father in Georgia. The idea was that she would have more opportunities in Atlanta for programs that could help her. Well, her dad moved to Statesboro (out in the sticks) and there's nothing close by anymore. So, it was decided that she would come back to Arkansas and I would find an apartment here for her, as well as some kind of program that would help her – some kind of continued adult education. Kacie planned to come back here for a visit. Two days before she left, she told me that it wouldn't be a visit. She was moving for good. I told her that really didn't work, these things take time. She had plans to stay with one of her fathers friends and help him at the apartments he worked at. And while I didn't really like this as a temporary plan, I liked it even less as a permanent plan. That was in March, I believe.

Since then I have managed to get Kacie's SSI moved from her father to me, opened her both checking and savings accounts, gotten her an Arkansas ID, and Medicaid. She is now enrolled in the Easter Seals Adult Day program but hasn't started because she doesn't have a permanent place to live. I won't go into why things didn't work out with her father's friend. But at the moment she is staying with my mother-in-law. The plan was that they could help each other out. It would push my MIL to become more independent and Kacie would be in a place that I deemed safe. Regardless, they aren't exactly getting along. Strong personalities and such.

I have tried every single disabled apartment complex that I know of.
She is on the waiting list for all three of the Easter Seals apartment complexes.
She should now be on the waiting list for the Cerebral Palsy apartments as well. (There are 5 people ahead of her on this list)
I'm in the process of filling out an application for PathFinders. They claim an apartment will open soon, but I'm not sure where it will be. And I don't know if anyone is on the list before her.

If I go through a disabled complex, the rent is subsidized. This way, they will only charge Kacie 30% of whatever she brings in. And right now, with her SSI, that's only $671/month.

I tried going the route of Section 8 housing. Little Rock doesn't have an open list right now, I was told to call North Little Rock and that I could use that anywhere. I called and put her on that list. It took 3 weeks to get a call back. They said I would get a letter in a couple of months and that it could take a COUPLE OF YEARS to get to her name on the list. So I can't use any HUD/Section 8 housing until she has a voucher.
I've called Arkansas Enterprises for the Developmentally Disabled.
Little Rock Community Mental Health Center.
Our Way Apartments
The ARC of Arkansas
None of these places have vacancies or, they take Section 8.

I've tried calling Medicaid, but since she's on SSI, they won't assign her a case worker. They told me there's someone in charge of SSI cases. I've called her several times and left messages. She hasn't called me back. I don't know what to do. Because of Kacie's mental problems I don't feel safe with her in a regular apartment complex (nor can she afford it) and I would prefer her to be in a place where the people around her are 'like' her. People who can relate to her issues. A place where there is someone watching over her–even if just from a distance. Someone who can say, 'Whoa. That's a stranger and I don't trust them.' She doesn't need day to day care. She lived alone for stretches of time while her dad was on business and her stepmother was visiting family. She can take care of herself on a micro level - cooking, cleaning (both the house and herself), she doesn't have issues with this. She can not drive. But there are transportation options. Kacie want's desperately to live on her own. She want's her independence. And I want to help her have it. But I'm running out of options.

Do you know someone who can help us? Can you help us? Do you know a place where she can stay? Is there something I'm missing? My husband mentioned food stamps, I hadn't thought of that. It will definitely help her to free up her money for other things.

I apologize that this was so long. If you have any questions that I haven't answered, ask in the comments, I'll answer. Thank you in advance. If you could forward this post to other people that might know something or someone, please do!

Thank you for reading this, I'm not usually this long winded. (OK, fine, I am)

Crybaby

I'm still super busy at work, but it's slowed enough that I have a few minutes to come post this. Hopefully things will settle back down to a more manageable flow soon. If I had to guess, it won't be until I go on vacation in October.

I had a rough day yesterday, and I really don't have time to go into it, nor do I think I should anymore. I've taken a step and shown my blog to a few coworkers and, while I look forward to their thoughts, I find that I might need to filter my thoughts on my posts and I don't really have that kind of time right now.

I will say this I had an incident where I ended up in tears in front of my boss. Again. Like for the fourth time since I've worked here in under two years.

Mostly, it pisses me off. I wear my heart on my sleeve and my emotions on my face. And the minute someone addresses that, the waterworks come on. It's not sobbing or anything. Just tears. Spilling down my face. Ruining what little make up I wear. No wonder he thinks I'm not even 24 (when I just turned 29!).

So, my quick question is, what do I do? Do you cry at the drop of a hat? Did you? How do I stop from welling up the moment someone says, 'Are you OK?'

I need some real help because this crap is getting old.