After her haircut, Emily chose "Bow Wow's" as the place where she wanted to celebrate and eat supper. (She calls Max & Erma's "Bow Wow's" because of my sister's dog, Max.) She begged for my lemon after I squeezed it into my water. Fun times!
Saturday, December 27, 2008
Video 3 of 4 (The finished product)
After the haircut, Krystel asked me if I'd like her to style Emily's hair. I told her I'd be thrilled if she wanted to because I am certainly out of ideas on things to do with Emily's hair. Not only did she style it, but she gave me lessons! Woohoo!
On top of that, the stuff she sprayed on Emily's hair when she was done smelled like cupcakes! Not only did our daughter look adorable after her haircut but I couldn't stop smelling her hair all night! Yummers!
On top of that, the stuff she sprayed on Emily's hair when she was done smelled like cupcakes! Not only did our daughter look adorable after her haircut but I couldn't stop smelling her hair all night! Yummers!
Video 2 of 4 (The Haircut)
After Daddy got off work yesterday, he joined us as we ventured to Cookie Cutters for Emily's very first haircut. Cookie Cutters was awesome experience! As soon as we walked in the door, Emily spotted the ginormous slide and started playing with her newfound friend, Lily, who had just finished getting her hair cut. Lily was just slightly younger than Emily but helped her crawl through the tunnel and showed her how to go down the big tube slide.
Emily's turn came and she followed her new friend and hair stylist, Krystel, back and got to sit in a car while she got her coiffeur trimmed. We picked Elmo as our in-flight entertainment and it was fabulous flying from there on out... enjoy!
Emily's turn came and she followed her new friend and hair stylist, Krystel, back and got to sit in a car while she got her coiffeur trimmed. We picked Elmo as our in-flight entertainment and it was fabulous flying from there on out... enjoy!
Video 1 of 4 (Mirror, Mirror)
Emily accompanied me in picking up Nannie's birthday present yesterday. She kept herself occupied while I did some shopping... and, NO, I did not leave her here unattended! In fact, she was quite upset when it was time to move on.
Wednesday, December 24, 2008
Who Knew?
Tuesday, December 23, 2008
Tuesday, December 16, 2008
Another day w/ the sickie...
I stayed home from work today with Emily and it was a good thing I did. I think we went through a record number of diapers today... I leave the rest to your imagination.
Saturday afternoon we were supposed to have gone to Dad's lodge for their Christmas party. Santa was supposed to make an appearance and I had talked about it the night before with Em and prepped her in the morning so it would be something she'd be looking forward to. She was a tad disappointed when we stayed home Saturday since she was sick. I told her we would try to visit the mall sometime this week to see if he was there.
Fast forward to yesterday morning: I let Emily sleep until the very last minute before we had to leave for the sitter's. It was still dark outside and her room was dark when I opened the door. I thought she was still asleep until I was greeted by, "Ho, Hoo, Hoooooo". Apparently, she's still thinking about her trip to the mall this week!
Today, even though she was sick she didn't let it dampen her spirits. I've tried to teach her to look at things with her eyes and not have to touch everything. She loves to look at our computer screen and keyboards and it's soo tempting for her to want to touch the keys while we're trying to type. Tonight she was identifying the letters on my keyboard that she can say (Z, Y, A, B, T, O, P, I, S, D, M, B, and C) and ended up trying to touch/press every one of them. I told her to look with her eyes... and the goofball literally tried to touch the keys with her eyeballs! Then she realized it was funny and kept trying to do it over and over. Sheesh!
At supper tonight, Emily tried her hand a praying for the first time. After I finished praying, I realized she still had her hands together and her head bowed. It went something like this, "blahblahblahDaddy, blahblahblahRyRy, blahblahblahPapa, blahblahblahShelllll, blahblahblahblahblahblahblahHoHoHooo". Um, yeah. I see where I rank.
Have a good evening! Let's pray this bug works its way out of Em's system soon!
Saturday afternoon we were supposed to have gone to Dad's lodge for their Christmas party. Santa was supposed to make an appearance and I had talked about it the night before with Em and prepped her in the morning so it would be something she'd be looking forward to. She was a tad disappointed when we stayed home Saturday since she was sick. I told her we would try to visit the mall sometime this week to see if he was there.
Fast forward to yesterday morning: I let Emily sleep until the very last minute before we had to leave for the sitter's. It was still dark outside and her room was dark when I opened the door. I thought she was still asleep until I was greeted by, "Ho, Hoo, Hoooooo". Apparently, she's still thinking about her trip to the mall this week!
Today, even though she was sick she didn't let it dampen her spirits. I've tried to teach her to look at things with her eyes and not have to touch everything. She loves to look at our computer screen and keyboards and it's soo tempting for her to want to touch the keys while we're trying to type. Tonight she was identifying the letters on my keyboard that she can say (Z, Y, A, B, T, O, P, I, S, D, M, B, and C) and ended up trying to touch/press every one of them. I told her to look with her eyes... and the goofball literally tried to touch the keys with her eyeballs! Then she realized it was funny and kept trying to do it over and over. Sheesh!
At supper tonight, Emily tried her hand a praying for the first time. After I finished praying, I realized she still had her hands together and her head bowed. It went something like this, "blahblahblahDaddy, blahblahblahRyRy, blahblahblahPapa, blahblahblahShelllll, blahblahblahblahblahblahblahHoHoHooo". Um, yeah. I see where I rank.
Have a good evening! Let's pray this bug works its way out of Em's system soon!
Monday, December 15, 2008
The Sickie
The flu bug has been making its journey around the neighborhood and it didn't feel like skipping our house this year. Em was a little extra cuddly on Friday night and I just thought she was tired. Saturday brought stomach cramps, some nasty diapers and a little spewage. She didn't have an appetite all day and it was difficult getting her to drink anything. Em and I stayed home from church Sunday "just in case" and it was a day without incident.
I figured she had gotten it out of her system and could return to the babysitter's today. Bad call, I guess. I got a call this afternoon about an hour before I was done for the day and it sounded like Em still wasn't feeling well. (2 diapers every half hour isn't normal, right?!?) I picked her up and headed home and so far (knock on wood!) she's been okay.
Throw some prayers up (not stomach contents) for the little one if you would. We didn't make it in for flu shots yet!
I figured she had gotten it out of her system and could return to the babysitter's today. Bad call, I guess. I got a call this afternoon about an hour before I was done for the day and it sounded like Em still wasn't feeling well. (2 diapers every half hour isn't normal, right?!?) I picked her up and headed home and so far (knock on wood!) she's been okay.
Throw some prayers up (not stomach contents) for the little one if you would. We didn't make it in for flu shots yet!
Thursday, December 11, 2008
Adoption Scammer on America's Most Wanted
Since we began our quest to adopt in the summer of 2004, we've met a lot of local and online families that have journeyed down the same path. Many were able to complete successful adoptions and unfortunately, for various reasons, several families were not able to have the same happy ending that we have.
The ending that hurts the most are the families that have been scammed by fraudulent adoption agencies. Shortly after we returned home with Emily we met a local family that was also interested in adopting from Kazakhstan and even had a picture of the little girl they were paperchasing. I've stayed in touch with this family and long story short, their story didn't have a happy ending. The agency they were working with (AIP) took them for tens of thousands of dollars. They considered switching agencies but could no longer afford the process. They never really found out if the little girl they were hoping to adopt was ever even available or if that was a lie to. Scams like this just burn me. I know first hand the emotional roller coaster that I road during our process and I still hate roller coasters! (I wasn't very fond of them to begin with!)
With that being said, pasted below is a link for one of the biggest adoption scammers out there... the one that scammed them. When we started researching agencies, we checked all the references and asked tons of people online for their recommendations. AIP (Adoption International Program), which is/was run by Orson Mozes is an agency that NObody should ever get involved with. He threatened clients, extorted money, used bait and switch tactics to lure people in to signing with his agency, and put many people's lives in danger.
PLEASE follow this link to America's Most Wanted and read the article about this person. Look at his picture and if you recognize him, PLEASE call the authorities. He's been on the run for a long time and in 2007 had 62 felony counts against him and had fled with over $500,000.
Please also consider tuning in to America's Most Wanted episode about Orson Mozes which will air on Saturday, January 3rd at 9/8 C on FOX. Please spread the message. The more that see this, the more likely someone will recognize him and will know where he is.
... stepping off my soap box now.
The ending that hurts the most are the families that have been scammed by fraudulent adoption agencies. Shortly after we returned home with Emily we met a local family that was also interested in adopting from Kazakhstan and even had a picture of the little girl they were paperchasing. I've stayed in touch with this family and long story short, their story didn't have a happy ending. The agency they were working with (AIP) took them for tens of thousands of dollars. They considered switching agencies but could no longer afford the process. They never really found out if the little girl they were hoping to adopt was ever even available or if that was a lie to. Scams like this just burn me. I know first hand the emotional roller coaster that I road during our process and I still hate roller coasters! (I wasn't very fond of them to begin with!)
With that being said, pasted below is a link for one of the biggest adoption scammers out there... the one that scammed them. When we started researching agencies, we checked all the references and asked tons of people online for their recommendations. AIP (Adoption International Program), which is/was run by Orson Mozes is an agency that NObody should ever get involved with. He threatened clients, extorted money, used bait and switch tactics to lure people in to signing with his agency, and put many people's lives in danger.
PLEASE follow this link to America's Most Wanted and read the article about this person. Look at his picture and if you recognize him, PLEASE call the authorities. He's been on the run for a long time and in 2007 had 62 felony counts against him and had fled with over $500,000.
Please also consider tuning in to America's Most Wanted episode about Orson Mozes which will air on Saturday, January 3rd at 9/8 C on FOX. Please spread the message. The more that see this, the more likely someone will recognize him and will know where he is.
... stepping off my soap box now.
Wednesday, December 10, 2008
Baby Hugs... an emailed story to share
A very good friend forwarded the story below to me this morning. It struck a chord with me since Emily does the very same thing as the little boy in the story. More often than not, our adventures happen in the grocery store where we love to shop together.
Shopping with Emily is still one of my favorite things to do with her. Although she's growing fast, at the time being, she still fits in the front seat of the shopping carts and we talk and play all the way through the store. She doesn't beg for things off the shelves. She doesn't squirm or cause problems. She loves to ask, "What is that?" and when I tell her we need to find something, she puts her hands under her chin, scrunches her face up and responds with, "Hmmmmmm" like she's really trying to figure out where things are. She loves to read letters off of signs and labels and loves to mimic the expressions of the kids and people on the boxes and advertisements in the stores. And, for at least the past year, Emily loves to wave and say "hi" to random strangers as they walk past us. Many times they don't hear her and she'll try again. More often than not, her "hi's" are returned with a twinkle in the eye and a broad smile and a wave. It's amazing how a little 2 year old girl can change a person's entire demeanor by simply saying, "hi". And, it is truly humbling how my reaction to some of those same people changes when my daughter opens the door for a conversation with them. God is already using this little girl to do ministry and to help her parents reach out to others.
I hope you enjoy the story below and that it touches you as much as it did me.
-jenni
- - - - - - - - - -
Baby's Hug
We were the only family with children in the restaurant. I sat Erik in a high chair and noticed everyone was quietly sitting and talking. Suddenly, Erik squealed with glee and said, 'Hi.' He pounded his fat baby hands on the high chair tray. His eyes were crinkled in laughter and his mouth was bared in a toothless grin, as he wriggled and giggled with merriment.
I looked around and saw the source of his merriment. It was a man whose pants were baggy with a zipper at half-mast and his toes poked out of would-be shoes His shirt was dirty and his hair was uncombed and unwashed. His whiskers were too short to be called a beard and his nose was so varicose it looked like a road map.
We were too far from him to smell, but I was sure he smelled. His hands waved and flapped on loose wrists. 'Hi there, baby; hi there, big boy. I see ya, buster,' the man said to Erik.
My husband and I exchanged looks, 'What do we do?'
Erik continued to laugh and answer, 'Hi.'
Everyone in the restaurant noticed and looked at us and then at the man. The old geezer was creating a nuisance with my beautiful baby. Our meal came and the man began shouting from across the room, 'Do ya patty cake? Do you know peek-a-boo? Hey, look, he knows peek-a-boo.'
Nobody thought the old man was cute. He was obviously drunk.
My husband and I were embarrassed. We ate in silence; all except for Erik, who was running through his repertoire for the admiring skid-row bum, who in turn, reciprocated with his cute comments.
We finally got through the meal and headed for the door. My husband went to pay the check and told me to meet him in the parking lot. The old man sat poised between me and the door. 'Lord, just let me out of here before he speaks to me or Erik,' I prayed. As I drew closer to the man, I turned my back trying to sidestep him and avoid any air he might be breathing. As I did, Erik leaned over my arm, reaching with both arms in a baby's 'pick-me-up' position. Before I could stop him, Erik had propelled himself from my arms to the man.
Suddenly a very old smelly man and a very young baby consummated their love and kinship. Erik in an act of total trust, love, and submission laid his tiny head upon the man's ragged shoulder. The man's eyes closed, and I saw tears hover beneath his lashes. His aged hands full of grime, pain, and hard labor, cradled my baby's bottom and stroked his back. No two beings have ever loved so deeply for so short a time.
I stood awestruck. The old man rocked and cradled Erik in his arms and his eyes opened and set squarely on mine. He said in a firm commanding voice, 'You take care of this baby.'
Somehow I managed, 'I will,' from a throat that contained a stone.
He pried Erik from his chest, lovingly and longingly, as though he were in pain. I received my baby, and the man said, 'God bless you, ma'am, you've given me my Christmas gift.'
I said nothing more than a muttered thanks. With Erik in my arms, I ran for the car. My husband was wondering why I was crying and holding Erik so tightly, and why I was saying, 'My God, my God, forgive me.'
I had just witnessed Christ's love shown through the innocence of a tiny child who saw no sin, who made no judgment; a child who saw a soul, and a mother who saw a suit of clothes. I was a Christian who was blind, holding a child who was not. I felt it was God asking, 'Are you willing to share your son for a moment?' when He shared His for all eternity.
The ragged old man, unwittingly, had reminded me, 'To enter the Kingdom of God, we must become as little children.'
Sometimes, it takes a child to remind us of what is really important. We must always remember who we are, where we came from and, most importantly, how we feel about others. The clothes on your back or the car that you drive or the house that you live in does not define you at all; it is how you treat your fellow man that identifies who you are.
(**After originally posting this, a new internet friend named Ellen shared the following information: "This was written by Nancy L. Dahlberg and published in at least two of William Baush's books. This is (a) stolen and (b) changed. It properly ends at "My God, my God, forgive me" other sentences are changed as well. "
I did some internet research of my own and did not find any information showing that Nancy L. Dahlberg wrote this. If she did, my apologies and I am all for giving credit where credit is due. It is still a very touching piece and I choose to leave it on my blog in hopes that it might change someone's actions especially during this holiday season.)
Shopping with Emily is still one of my favorite things to do with her. Although she's growing fast, at the time being, she still fits in the front seat of the shopping carts and we talk and play all the way through the store. She doesn't beg for things off the shelves. She doesn't squirm or cause problems. She loves to ask, "What is that?" and when I tell her we need to find something, she puts her hands under her chin, scrunches her face up and responds with, "Hmmmmmm" like she's really trying to figure out where things are. She loves to read letters off of signs and labels and loves to mimic the expressions of the kids and people on the boxes and advertisements in the stores. And, for at least the past year, Emily loves to wave and say "hi" to random strangers as they walk past us. Many times they don't hear her and she'll try again. More often than not, her "hi's" are returned with a twinkle in the eye and a broad smile and a wave. It's amazing how a little 2 year old girl can change a person's entire demeanor by simply saying, "hi". And, it is truly humbling how my reaction to some of those same people changes when my daughter opens the door for a conversation with them. God is already using this little girl to do ministry and to help her parents reach out to others.
I hope you enjoy the story below and that it touches you as much as it did me.
-jenni
- - - - - - - - - -
Baby's Hug
We were the only family with children in the restaurant. I sat Erik in a high chair and noticed everyone was quietly sitting and talking. Suddenly, Erik squealed with glee and said, 'Hi.' He pounded his fat baby hands on the high chair tray. His eyes were crinkled in laughter and his mouth was bared in a toothless grin, as he wriggled and giggled with merriment.
I looked around and saw the source of his merriment. It was a man whose pants were baggy with a zipper at half-mast and his toes poked out of would-be shoes His shirt was dirty and his hair was uncombed and unwashed. His whiskers were too short to be called a beard and his nose was so varicose it looked like a road map.
We were too far from him to smell, but I was sure he smelled. His hands waved and flapped on loose wrists. 'Hi there, baby; hi there, big boy. I see ya, buster,' the man said to Erik.
My husband and I exchanged looks, 'What do we do?'
Erik continued to laugh and answer, 'Hi.'
Everyone in the restaurant noticed and looked at us and then at the man. The old geezer was creating a nuisance with my beautiful baby. Our meal came and the man began shouting from across the room, 'Do ya patty cake? Do you know peek-a-boo? Hey, look, he knows peek-a-boo.'
Nobody thought the old man was cute. He was obviously drunk.
My husband and I were embarrassed. We ate in silence; all except for Erik, who was running through his repertoire for the admiring skid-row bum, who in turn, reciprocated with his cute comments.
We finally got through the meal and headed for the door. My husband went to pay the check and told me to meet him in the parking lot. The old man sat poised between me and the door. 'Lord, just let me out of here before he speaks to me or Erik,' I prayed. As I drew closer to the man, I turned my back trying to sidestep him and avoid any air he might be breathing. As I did, Erik leaned over my arm, reaching with both arms in a baby's 'pick-me-up' position. Before I could stop him, Erik had propelled himself from my arms to the man.
Suddenly a very old smelly man and a very young baby consummated their love and kinship. Erik in an act of total trust, love, and submission laid his tiny head upon the man's ragged shoulder. The man's eyes closed, and I saw tears hover beneath his lashes. His aged hands full of grime, pain, and hard labor, cradled my baby's bottom and stroked his back. No two beings have ever loved so deeply for so short a time.
I stood awestruck. The old man rocked and cradled Erik in his arms and his eyes opened and set squarely on mine. He said in a firm commanding voice, 'You take care of this baby.'
Somehow I managed, 'I will,' from a throat that contained a stone.
He pried Erik from his chest, lovingly and longingly, as though he were in pain. I received my baby, and the man said, 'God bless you, ma'am, you've given me my Christmas gift.'
I said nothing more than a muttered thanks. With Erik in my arms, I ran for the car. My husband was wondering why I was crying and holding Erik so tightly, and why I was saying, 'My God, my God, forgive me.'
I had just witnessed Christ's love shown through the innocence of a tiny child who saw no sin, who made no judgment; a child who saw a soul, and a mother who saw a suit of clothes. I was a Christian who was blind, holding a child who was not. I felt it was God asking, 'Are you willing to share your son for a moment?' when He shared His for all eternity.
The ragged old man, unwittingly, had reminded me, 'To enter the Kingdom of God, we must become as little children.'
Sometimes, it takes a child to remind us of what is really important. We must always remember who we are, where we came from and, most importantly, how we feel about others. The clothes on your back or the car that you drive or the house that you live in does not define you at all; it is how you treat your fellow man that identifies who you are.
(**After originally posting this, a new internet friend named Ellen shared the following information: "This was written by Nancy L. Dahlberg and published in at least two of William Baush's books. This is (a) stolen and (b) changed. It properly ends at "My God, my God, forgive me" other sentences are changed as well. "
I did some internet research of my own and did not find any information showing that Nancy L. Dahlberg wrote this. If she did, my apologies and I am all for giving credit where credit is due. It is still a very touching piece and I choose to leave it on my blog in hopes that it might change someone's actions especially during this holiday season.)
Friday, December 05, 2008
Good News... Bad News...
GOOD NEWS: I snagged some more pictures and video of Miss Em over the past couple of days.
BAD NEWS: They aren't included in this post.
GOOD NEWS: Emily had her botox follow-up appointment at Children's Hospital on Tuesday afternoon and (despite getting shots the last time she was there) she happily walked into the building, the waiting room and the exam rooms!
BAD NEWS: The doctor did a couple of flexy-things with Em's feet and quickly pronounced that Emily's flexibility hasn't changed one iota.
Say what?
The following day was physical therapy day and I mentioned the above to the physical therapist. Thankfully, she had the same reaction that I did. She didn't agree at all. She says there are so many things that Emily is doing now that she simply couldn't do before. She is also walking with her feet down when we remind her and she couldn't do that before.
We did get another prescription from Dr. B at Children's (whom Emily is now referring to as Nana B). They are recommending that Emily start going to PT twice a week now. So let's add those up... 2 physical therapies each week, 1 speech therapy each week, botox injections every 3 months, botox follow-ups 3 weeks after each injection, regular pediatric appointments and shots and a partridge in a pear tree!
GOOD NEWS: We found out Wednesday evening that Emily was approved for BCMH treatment funding. We don't have all the details yet, but should be getting them on Monday in the mail. She was approved a couple of months ago for BCMH Early Intervention funding, but if I understand it all correctly, that runs out when she turn 3 in May (can you believe she'll be 3 already!) and it has some different stipulations to it.
BAD NEWS: Apparently BCMH funding is getting hacked at like everything else in the Ohio Governor's budget and the last time it happened thousands of families' funding was cut with very little notice. The state is also looking at moving BCMH to be covered under some sort of Medicaid umbrella and that causes all sorts of other problems for BCMH families. At this point, I don't have a clue how this will effect us. If this happens, I don't know if we'll lose all funding, some funding or if everything will change altogether for us. I'm holding on to what I have right now and praying that Emily won't be harmed by the beaurocratic number crunching and shuffling that is said to be happening in the wings.
That's it from me, but if you care at all about special needs families in Ohio, the letter pasted below is definitely worth a read. We CAN do something to try to prevent this from happening. Take up your pens... or word processors and start writing!
- - - - - - - -
What is Happening to BCMH???
I am a concerned parent who has two children with Special Health Care Needs receiving benefits under the Ohio Department of Health’s Bureau for Children with Medical Handicaps program. I am a member of the Parent Advisory Council (PAC) for the Bureau for Children with Medical Handicaps. I am also a working, tax paying, citizen of Ohio. My daughters are covered under private health insurance and rely heavily upon BCMH to be their safety net.
Background
In 1969, the Ohio Bureau of Crippled Children’s Program (BCCS), now BCMH, was moved to Ohio Department of Public Welfare from the Ohio Department of Health. Because of disastrous results, it was moved back to the ODH in 1974. Medicaid did not understand the BCMH program. The end result was that BCMH clients were lost in the public welfare system and many working families did not qualify for services.
In 2006, the state again considered moving BCMH from ODH to the then proposed Department of Medicaid. At that time stakeholders of BCMH warned that such a move would put the uniqueness of BCMH in jeopardy. The stakeholders were concerned that BCMH would be seen as and become a Medicaid-type program thus risking its ability to provide services to working, middle class, privately insured families with Children with Special Healthcare Needs as well as to those Children with Special Health Care Needs who are covered by both Medicaid and BCMH. In response to the stakeholders’ concerns, BCMH remained an important part of ODH’s mission.
BCMH is again under threat of removal from the purview of ODH to under the scrutiny, management, and operation of EMMA (Executive Medicaid Management Administration). This move clearly goes against legislative intent in maintaining the uniqueness of the BCMH program and against the recommendations of the BCMH Legislative Task Force to Study the Future Funding of BCMH. It also clearly has been demonstrated that such a move will prove ineffective in providing services to Ohioans who rely on the program for health care.
What is at Stake?
What happens if BCMH is moved under the executive management and administration of EMMA and becomes a Medicaid-like program?
b) The Medicaid spend down program for disabled dual eligible BCMH/Medicaid clients allows BCMH to pay the Medicaid spend down amounts to ensure that they will receive both Medicaid and BCMH benefits which presents a cost savings to the BCMH program and the state of Ohio.
c) BCMH is able to draw down Federal Maternal Child Health Block Grant dollars and individual county real estate tax dollars within the Ohio Department of Health. Medicaid cannot access these dollars.
d) BCMH allows Children with Special Health Care Needs to be covered under the program until age 21 while Medicaid stops at age 18. Clients with CF are covered into adulthood.
e) BCMH allows for the HIPP program (Hemophilia Insurance Premium Program) while Medicaid does not.
f) BCMH works in conjunction with the Help Me Grow Program while Medicaid does not.
g) BCMH has a diagnostic component while Medicaid does not.
h) BCMH supports families allowing them to continue to work and pay taxes while Medicaid does not.
BCMH Budget
In addition to a proposed move, BCMH has also seen cuts to its current budget with more cuts likely to be proposed in the near future. In recent months, ODH/BCMH has experienced a budget reduction by action of Governor Strickland in the following ways…BCMH Children’s line item has been lowered by $512,610 (4.75% cut); the Adult Cystic Fibrosis line item has also been cut by $94,044 (almost 6% cut).
Historically, ODH/BCMH has handled budget reductions by manipulating the financial eligibility formulas resulting in the elimination of clients covered under the program. The last time cuts were incurred; five thousand clients were removed from the program with little to no notification of BCMH clients. Some benefits in the service package were also cut affecting thousands of clients.
What Can I Do to Help?
In the coming weeks, we will be organizing a campaign to address the issue of budget cuts and the movement of BCMH directly with the Governor’s office and the state General Assembly. We need your help to ensure that BCMH continues to provide services to Ohioans.
I would strongly advocate that BCMH remain under the leadership and direction of ODH so that it may retain its uniqueness and continue serving the needs of Children with Special Health Care Needs of Ohio.
Please distribute widely.
11/20/2008
Mr. David L. Hoffman, Parent of two children on BCMH
Member of the Parent Advisory Council (PAC) for BCMH
Email: dlhoffman@insight.rr.com
PH: 740.548.7305
For more information, or for more information about the upcoming action steps, please contact:
Mrs. Kim Mathews
Member of the Parent Advisory Council (PAC) for BCMH
Email: tkemathews@hotmail.com
PH: 740.366.2858
Mr. Jason Ranville
Public Policy Specialist
Cystic Fibrosis Foundation
301.841.2617
jranville@cff.org
BAD NEWS: They aren't included in this post.
GOOD NEWS: Emily had her botox follow-up appointment at Children's Hospital on Tuesday afternoon and (despite getting shots the last time she was there) she happily walked into the building, the waiting room and the exam rooms!
BAD NEWS: The doctor did a couple of flexy-things with Em's feet and quickly pronounced that Emily's flexibility hasn't changed one iota.
Say what?
The following day was physical therapy day and I mentioned the above to the physical therapist. Thankfully, she had the same reaction that I did. She didn't agree at all. She says there are so many things that Emily is doing now that she simply couldn't do before. She is also walking with her feet down when we remind her and she couldn't do that before.
We did get another prescription from Dr. B at Children's (whom Emily is now referring to as Nana B). They are recommending that Emily start going to PT twice a week now. So let's add those up... 2 physical therapies each week, 1 speech therapy each week, botox injections every 3 months, botox follow-ups 3 weeks after each injection, regular pediatric appointments and shots and a partridge in a pear tree!
GOOD NEWS: We found out Wednesday evening that Emily was approved for BCMH treatment funding. We don't have all the details yet, but should be getting them on Monday in the mail. She was approved a couple of months ago for BCMH Early Intervention funding, but if I understand it all correctly, that runs out when she turn 3 in May (can you believe she'll be 3 already!) and it has some different stipulations to it.
BAD NEWS: Apparently BCMH funding is getting hacked at like everything else in the Ohio Governor's budget and the last time it happened thousands of families' funding was cut with very little notice. The state is also looking at moving BCMH to be covered under some sort of Medicaid umbrella and that causes all sorts of other problems for BCMH families. At this point, I don't have a clue how this will effect us. If this happens, I don't know if we'll lose all funding, some funding or if everything will change altogether for us. I'm holding on to what I have right now and praying that Emily won't be harmed by the beaurocratic number crunching and shuffling that is said to be happening in the wings.
That's it from me, but if you care at all about special needs families in Ohio, the letter pasted below is definitely worth a read. We CAN do something to try to prevent this from happening. Take up your pens... or word processors and start writing!
- - - - - - - -
What is Happening to BCMH???
I am a concerned parent who has two children with Special Health Care Needs receiving benefits under the Ohio Department of Health’s Bureau for Children with Medical Handicaps program. I am a member of the Parent Advisory Council (PAC) for the Bureau for Children with Medical Handicaps. I am also a working, tax paying, citizen of Ohio. My daughters are covered under private health insurance and rely heavily upon BCMH to be their safety net.
Background
In 1969, the Ohio Bureau of Crippled Children’s Program (BCCS), now BCMH, was moved to Ohio Department of Public Welfare from the Ohio Department of Health. Because of disastrous results, it was moved back to the ODH in 1974. Medicaid did not understand the BCMH program. The end result was that BCMH clients were lost in the public welfare system and many working families did not qualify for services.
In 2006, the state again considered moving BCMH from ODH to the then proposed Department of Medicaid. At that time stakeholders of BCMH warned that such a move would put the uniqueness of BCMH in jeopardy. The stakeholders were concerned that BCMH would be seen as and become a Medicaid-type program thus risking its ability to provide services to working, middle class, privately insured families with Children with Special Healthcare Needs as well as to those Children with Special Health Care Needs who are covered by both Medicaid and BCMH. In response to the stakeholders’ concerns, BCMH remained an important part of ODH’s mission.
BCMH is again under threat of removal from the purview of ODH to under the scrutiny, management, and operation of EMMA (Executive Medicaid Management Administration). This move clearly goes against legislative intent in maintaining the uniqueness of the BCMH program and against the recommendations of the BCMH Legislative Task Force to Study the Future Funding of BCMH. It also clearly has been demonstrated that such a move will prove ineffective in providing services to Ohioans who rely on the program for health care.
What is at Stake?
What happens if BCMH is moved under the executive management and administration of EMMA and becomes a Medicaid-like program?
- This move puts the uniqueness of BCMH and its ability to be a safety net for families of Children with Special Health Care Needs in jeopardy. BCMH has the potential to become Medicaid-like and be lumped into Medicaid with the same limits to benefits.
- Many children of working families who have special health care needs neither financially nor medically qualify for Medicaid. Applying Medicaid eligibility requirements will result in the loss of services to people who rely on BCMH for their health care.
- The population that is currently served by BCMH is not the same population as those currently being served by Medicaid and some of those being served by BCMH will fall though the cracks and lose their services.
- Medicaid maintains a limit on the number of prescriptions per month and tends to be too restrictive for people of certain disease groups covered under the BCMH program. Relocating BCMH under EMMA could result in patients being unable to get the prescriptions that they need to stay healthy each month. BCMH Medicaid dual eligible clients are currently permitted and encouraged by BCMH to opt out of Medicaid managed care plans because they are too restrictive and present barriers to clients obtaining appropriate and accessible health care and necessary medications.
- The state of Ohio has more control over BCMH and the benefits offered to its clients than it would under Medicaid.
- The staff of BCMH works directly with families who have Children with Special Healthcare Needs to make difficult situations work and to find solutions to unique problems while Medicaid does not.
- Benefits unique to BCMH will be lost as BCMH is forced to become Medicaid-like.
b) The Medicaid spend down program for disabled dual eligible BCMH/Medicaid clients allows BCMH to pay the Medicaid spend down amounts to ensure that they will receive both Medicaid and BCMH benefits which presents a cost savings to the BCMH program and the state of Ohio.
c) BCMH is able to draw down Federal Maternal Child Health Block Grant dollars and individual county real estate tax dollars within the Ohio Department of Health. Medicaid cannot access these dollars.
d) BCMH allows Children with Special Health Care Needs to be covered under the program until age 21 while Medicaid stops at age 18. Clients with CF are covered into adulthood.
e) BCMH allows for the HIPP program (Hemophilia Insurance Premium Program) while Medicaid does not.
f) BCMH works in conjunction with the Help Me Grow Program while Medicaid does not.
g) BCMH has a diagnostic component while Medicaid does not.
h) BCMH supports families allowing them to continue to work and pay taxes while Medicaid does not.
BCMH Budget
In addition to a proposed move, BCMH has also seen cuts to its current budget with more cuts likely to be proposed in the near future. In recent months, ODH/BCMH has experienced a budget reduction by action of Governor Strickland in the following ways…BCMH Children’s line item has been lowered by $512,610 (4.75% cut); the Adult Cystic Fibrosis line item has also been cut by $94,044 (almost 6% cut).
Historically, ODH/BCMH has handled budget reductions by manipulating the financial eligibility formulas resulting in the elimination of clients covered under the program. The last time cuts were incurred; five thousand clients were removed from the program with little to no notification of BCMH clients. Some benefits in the service package were also cut affecting thousands of clients.
What Can I Do to Help?
In the coming weeks, we will be organizing a campaign to address the issue of budget cuts and the movement of BCMH directly with the Governor’s office and the state General Assembly. We need your help to ensure that BCMH continues to provide services to Ohioans.
I would strongly advocate that BCMH remain under the leadership and direction of ODH so that it may retain its uniqueness and continue serving the needs of Children with Special Health Care Needs of Ohio.
Please distribute widely.
11/20/2008
Mr. David L. Hoffman, Parent of two children on BCMH
Member of the Parent Advisory Council (PAC) for BCMH
Email: dlhoffman@insight.rr.com
PH: 740.548.7305
For more information, or for more information about the upcoming action steps, please contact:
Mrs. Kim Mathews
Member of the Parent Advisory Council (PAC) for BCMH
Email: tkemathews@hotmail.com
PH: 740.366.2858
Mr. Jason Ranville
Public Policy Specialist
Cystic Fibrosis Foundation
301.841.2617
jranville@cff.org
Tuesday, December 02, 2008
Say What?
I've been trying to catch this on video for you, but the elusive Emily buttons her lips and has been getting all shy when the camera has been out lately.
Here's the story:
We were driving around town a couple of weeks ago and from the back seat we hear singing... More specifically, we heard, "Aw, sh!#. Aw, sh!#. Boom!" Tom and I looked at each other in disbelief and then acknowledged that we both heard the same thing. After stifling my laughter, it took a few seconds for my mommy-interpretation skills to kick in.
Step 1: Emily had been at the babysitter's earlier and spent the day playing with nearly all girls.
Step 2: Boom = down (as in boom boom boom = going down the stairs on your rumpus)
Step 3: Piece it all together and fill in some MAJOR gaps.
My sweet, lovely, angel of a daughter was singing "Ashes, ashes, we all fall down!" She confirmed my theory when we got home and she started dancing in circles while singing and plopping to the ground on the "boom" part.
Oh, but it was so much better hearing it straight from the horse's mouth!
Here's the story:
We were driving around town a couple of weeks ago and from the back seat we hear singing... More specifically, we heard, "Aw, sh!#. Aw, sh!#. Boom!" Tom and I looked at each other in disbelief and then acknowledged that we both heard the same thing. After stifling my laughter, it took a few seconds for my mommy-interpretation skills to kick in.
Step 1: Emily had been at the babysitter's earlier and spent the day playing with nearly all girls.
Step 2: Boom = down (as in boom boom boom = going down the stairs on your rumpus)
Step 3: Piece it all together and fill in some MAJOR gaps.
My sweet, lovely, angel of a daughter was singing "Ashes, ashes, we all fall down!" She confirmed my theory when we got home and she started dancing in circles while singing and plopping to the ground on the "boom" part.
Oh, but it was so much better hearing it straight from the horse's mouth!
Monday, December 01, 2008
What the heck?
For the past month or two, I’ve been thinking that Emily is getting closer and closer to being ready to start the whole potty-training thing. At diaper changing time, she’s thrilled to tell us if she’s gone potty or pooped. She’s intrigued by the whole toilet thing. She’s had her own special potty chair at my parent’s house for a month or so and seems really excited about it. And last weekend we even purchased one for our house.
Potty training is one of those parenting areas where I’m just not too confident with my skills so I’ve been doing some extra reading online. Last week, while visiting the Pampers.com web site, I was excited to find a section devoted to potty training! I read through a couple of screens and felt my confidence level rise as I kept saying to myself, “Yes, that makes perfect sense. That’s probably what I would have tried doing.”
That is until I clicked on the advice link for “We can help you with some ways to start”. Try it! It takes you to a recipe for “Corn and Tomato Pudding”! First off -- Can you say disgusting?!??! Secondly, it’s obviously an incorrect link… but how hilarious is it that something so disgusting is linked to the topic of potty training and all things toilet-related!?!? I had to click on it a few times to be sure!
I just want to assure you that our potty-training regiment will be attempted soon (possibly while I’m home for Christmas break) and that we will not be using Corn and Tomato Pudding as any form of PTT (Potty-Training Tactics) whether it be a reward (ewww… I’m not THAT mean) or threat.
Potty training is one of those parenting areas where I’m just not too confident with my skills so I’ve been doing some extra reading online. Last week, while visiting the Pampers.com web site, I was excited to find a section devoted to potty training! I read through a couple of screens and felt my confidence level rise as I kept saying to myself, “Yes, that makes perfect sense. That’s probably what I would have tried doing.”
That is until I clicked on the advice link for “We can help you with some ways to start”. Try it! It takes you to a recipe for “Corn and Tomato Pudding”! First off -- Can you say disgusting?!??! Secondly, it’s obviously an incorrect link… but how hilarious is it that something so disgusting is linked to the topic of potty training and all things toilet-related!?!? I had to click on it a few times to be sure!
I just want to assure you that our potty-training regiment will be attempted soon (possibly while I’m home for Christmas break) and that we will not be using Corn and Tomato Pudding as any form of PTT (Potty-Training Tactics) whether it be a reward (ewww… I’m not THAT mean) or threat.
Friday, November 28, 2008
Happy Thanksgiving!
We had a fun day yesterday celebrating Thanksgiving with our families. We took our camera with us to the Gaston shindig but forgot about it until we were ready to leave. Once we mentioned "leaving" Emily was in no mood for a photoshoot.
After lunch and chatting for a bit we hit the road to pick up Ryan and took him along with us to Thanksgiving Part II.
Here's Papa H.
I mentioned to Papa that Emily adored him and that I wasn't quite sure if it was because of his charming personality or if it was because her favorite picture of him is of him holding a giant yellow cupcake. I was to learn later in the evening that he was working the system to earn Emily's admiration and Emily was eating it up... in the form of red, green, blue, and yellow M&Ms (as evidenced by the new colors on her outfit from last night)!
Emily had a blast and is one of Papa's best buds now.
Here are Ryan and Emily's cousins, Keegan and Rachel. Rachel is showing off her missing teeth which she kindly put under her pillow for the tooth fairy!
Emily has been enjoying an older picture of these two and when she first saw Keegan live and in person last night she was a little timid. Keegan was cool and gave Em her space until she had warmed up to him. She kept pointing at him and saying, "Biiiiig!". Well, of course he's big! She's been looking at a picture where he's only about 2 inches tall!
Emily was worried that she'd lost Keegan whenever he'd get up from the table. She'd let us know of her concern by shouting, "Uh-oh!" She loves her Keegan!
Emily decided to help herself to the bowl of chex mix that was harboring Papa's M&M's. She was equally excited by the multitude of raisins and dried cranberries that were mixed among the chex mix, cheezits, and other crunch stuff.
Rachel was just told that it was time to leave and as you can see, she wasn't at all impressed with the idea. Jeffrey, however, was happy to oblige and have a quick picture taken with his cousin, Emily!
WE HOPE YOU HAD A GREAT THANKSGIVING!
After lunch and chatting for a bit we hit the road to pick up Ryan and took him along with us to Thanksgiving Part II.
Here's Papa H.
I mentioned to Papa that Emily adored him and that I wasn't quite sure if it was because of his charming personality or if it was because her favorite picture of him is of him holding a giant yellow cupcake. I was to learn later in the evening that he was working the system to earn Emily's admiration and Emily was eating it up... in the form of red, green, blue, and yellow M&Ms (as evidenced by the new colors on her outfit from last night)!
Emily had a blast and is one of Papa's best buds now.
Here are Ryan and Emily's cousins, Keegan and Rachel. Rachel is showing off her missing teeth which she kindly put under her pillow for the tooth fairy!
Emily has been enjoying an older picture of these two and when she first saw Keegan live and in person last night she was a little timid. Keegan was cool and gave Em her space until she had warmed up to him. She kept pointing at him and saying, "Biiiiig!". Well, of course he's big! She's been looking at a picture where he's only about 2 inches tall!
Emily was worried that she'd lost Keegan whenever he'd get up from the table. She'd let us know of her concern by shouting, "Uh-oh!" She loves her Keegan!
Emily decided to help herself to the bowl of chex mix that was harboring Papa's M&M's. She was equally excited by the multitude of raisins and dried cranberries that were mixed among the chex mix, cheezits, and other crunch stuff.
Rachel was just told that it was time to leave and as you can see, she wasn't at all impressed with the idea. Jeffrey, however, was happy to oblige and have a quick picture taken with his cousin, Emily!
WE HOPE YOU HAD A GREAT THANKSGIVING!
Wednesday, November 26, 2008
Botox and a Surprise Update
Sorry, gang. No pictures today. I've been holding off on posting an update because I really wanted to include some fun pictures. I lost the memory stick to my good camera about a week ago. Fortunately, I had all the pictures already off of it, but it took me a while to replace it.
A few of you have asked for an update on how the botox injections are working. Let's just say my jaw dropped last Wednesday when Emily's physical therapist asked her to walk across the room with "feet down" and she complied. I was amazed that with just a little reminding she dropped down from tippy-toes and shuffled across the floor with her feet flat. Since then, we try to remind her several times a day to do this but we try not to be obnoxious about it either. We still need to help her stretch since the structure of her feet and ankles having been working to their full potential. So far, botox has been an answer to prayer and with some work she'll be able to walk and run with a normal gait. Thanks everyone for the continued prayers!
My mom offered to watch Emily on Saturday morning so we could spend some time getting our Christmas decorations up and get some work done around the house. Tom and I have been planning on rearranging furniture in our living room and moving Ryan's room into the upstairs office and putting the office back downstairs again. We spent a couple hours on rearranging things and then I put the new Christmas tree up (which we bought at Hobby Lobby for about $25 last year on clearance)! Before I knew it, it was time for me to run to Mom's and pick up Emily!
Emily had eaten lunch at Mom's and it was time for her nap when we got home. Under the guise of "hiding from Daddy" I threw a blanket over her head as I carried her into the house and into her room. She didn't get to peek at the surprise waiting for her in the living room as we walked through it. Grandma must have had a busy morning with Emily because she napped for nearly 2 1/2 hours! After she got up from her nap, I told her we had a surprise waiting for her in the living and asked if she wanted to see it. She happily said, "Yeah!" and walked out to take a look. Her response... "Whoooooaaaa!" Now when she sees a Christmas tree she throws her hands up in the air and shouts, "uh-rise!" (translation: surprise!) Yeah, this is going to be a fun Christmas.
That's about it for this entry. I promise to take my camera along with me to our Thanksgiving adventures with both of our families. The next update WILL have pictures. ;-)
Be Blessed and Happy Thanksgiving, Everybody!
A few of you have asked for an update on how the botox injections are working. Let's just say my jaw dropped last Wednesday when Emily's physical therapist asked her to walk across the room with "feet down" and she complied. I was amazed that with just a little reminding she dropped down from tippy-toes and shuffled across the floor with her feet flat. Since then, we try to remind her several times a day to do this but we try not to be obnoxious about it either. We still need to help her stretch since the structure of her feet and ankles having been working to their full potential. So far, botox has been an answer to prayer and with some work she'll be able to walk and run with a normal gait. Thanks everyone for the continued prayers!
My mom offered to watch Emily on Saturday morning so we could spend some time getting our Christmas decorations up and get some work done around the house. Tom and I have been planning on rearranging furniture in our living room and moving Ryan's room into the upstairs office and putting the office back downstairs again. We spent a couple hours on rearranging things and then I put the new Christmas tree up (which we bought at Hobby Lobby for about $25 last year on clearance)! Before I knew it, it was time for me to run to Mom's and pick up Emily!
Emily had eaten lunch at Mom's and it was time for her nap when we got home. Under the guise of "hiding from Daddy" I threw a blanket over her head as I carried her into the house and into her room. She didn't get to peek at the surprise waiting for her in the living room as we walked through it. Grandma must have had a busy morning with Emily because she napped for nearly 2 1/2 hours! After she got up from her nap, I told her we had a surprise waiting for her in the living and asked if she wanted to see it. She happily said, "Yeah!" and walked out to take a look. Her response... "Whoooooaaaa!" Now when she sees a Christmas tree she throws her hands up in the air and shouts, "uh-rise!" (translation: surprise!) Yeah, this is going to be a fun Christmas.
That's about it for this entry. I promise to take my camera along with me to our Thanksgiving adventures with both of our families. The next update WILL have pictures. ;-)
Be Blessed and Happy Thanksgiving, Everybody!
Wednesday, November 12, 2008
Thanks for the Botox Prayers!
Today was Botox day!
To be honest, Tom and I were a bit anxious about what all was going to go down and how Emily was going to react to it all. I think it was more nervousness about the unknown than anything else.
Tom had trouble getting away for the afternoon today so my mom accompanied us to Children's Hospital today. It's recommended that you show up a half hour prior to your appointment to get checked in but I think they just tell you that so you have time to find a parking space. We inched our way through all 5 or 6 levels of the parking garage and up to the rooftop parking. We turned around and inched our way all the way back down and ended up at the exit without a parking spot. Did I mentioned that Em doesn't like to inch anywhere in a car? She was a bit perturbed once she realized we had turned around and were going back the way we came. Fortunately, there was an attendant that let us out without having to pay. He falsely informed me there was no other parking aside from that garage so we went around the block and drove back into the garage again. This time, though, we were blessed to find a spot opened up near the elevators on the 2nd level. We still checked in for our appointment with 8 minutes to spare!
When Em's name was called we went back to our exam room and whipped out our crayons so we could color on the table paper. Then she glanced out the door and spotted the toys lining the counter at the nurse's station. She made quick friends with the play therapist, Annie, and I would venture a guess that she played with each and every toy that was in Annie's arsenal.
After a few minutes, Emily's new doctor (the botox specialist) and her entourage came in. This part was really cool (in my eyes at least... ) A young male doctor stuck his hand out, introduced himself and shook my hand. Next was a young lady that introduced herself as Dr. Kaitz's interpreter. I was a bit confused but shook her hand and said I was glad to meet her. Next was Dr. Kaitz. Her wheelchair did not define her but added to the great impression she made. She appeared to be a paraplegic that was possibly deaf but she spoke very clearly. The interpreter stood slightly behind me and signed a few things that I said. It was obvious from the get-go that this team was used to working together and had a fine-tuned rhythm to everything they did. Also joining us in the room was Patti, a nurse and Annie, the play therapist whose job was to distract Emily. Prior to us getting all situated, Dr. Kaitz asked if Emily like dogs and that maybe her dog could come in for a visit when we were done.
Emily layed on her tummy like she was getting ready for a photoshoot and watched as Annie blew bubbles. It was all well and good until the others moved in and started to hold her down. It didn't take more than a minute or two for them to rub some numbing cream on the back of her calves (not her thighs/hips like I originally thought) and to give the Botox injections. She turned on the tears and was more than a bit upset that she was being held down. I think being held down bothered her more than the shots themselves. This is a girl that enjoys her freedom!
After the shots, I gave her a big hug and helped her down from the table. As I turned around, I noticed a beautiful black lab had entered our room and was sitting in front of Dr. Kaitz. (Wow, she's quick!) She introduced Emily and I to Travis (her assist dog) and Emily hugged him and loved petting him. It wasn't long after that that Emily was giving everyone high-fives and blowing kisses!
We played for a few minutes in the toy room and said goodbye to everyone before we joined Grandma in the lobby.
In less than an hour after we landed our parking spot we were back on the road. Em was feeling fine so the 3 of us even ventured across town to hit the Once Upon a Child store to grab some new winter clothes for Miss Em. Here are some pictures of the Botox Hat & Boot Queen from tonight... she's very proud of her new hat and Land's End boots that we scored for $6! Proud enough to wear them with her PJs tonight while watching her favorite videos.
To be honest, Tom and I were a bit anxious about what all was going to go down and how Emily was going to react to it all. I think it was more nervousness about the unknown than anything else.
Tom had trouble getting away for the afternoon today so my mom accompanied us to Children's Hospital today. It's recommended that you show up a half hour prior to your appointment to get checked in but I think they just tell you that so you have time to find a parking space. We inched our way through all 5 or 6 levels of the parking garage and up to the rooftop parking. We turned around and inched our way all the way back down and ended up at the exit without a parking spot. Did I mentioned that Em doesn't like to inch anywhere in a car? She was a bit perturbed once she realized we had turned around and were going back the way we came. Fortunately, there was an attendant that let us out without having to pay. He falsely informed me there was no other parking aside from that garage so we went around the block and drove back into the garage again. This time, though, we were blessed to find a spot opened up near the elevators on the 2nd level. We still checked in for our appointment with 8 minutes to spare!
When Em's name was called we went back to our exam room and whipped out our crayons so we could color on the table paper. Then she glanced out the door and spotted the toys lining the counter at the nurse's station. She made quick friends with the play therapist, Annie, and I would venture a guess that she played with each and every toy that was in Annie's arsenal.
After a few minutes, Emily's new doctor (the botox specialist) and her entourage came in. This part was really cool (in my eyes at least... ) A young male doctor stuck his hand out, introduced himself and shook my hand. Next was a young lady that introduced herself as Dr. Kaitz's interpreter. I was a bit confused but shook her hand and said I was glad to meet her. Next was Dr. Kaitz. Her wheelchair did not define her but added to the great impression she made. She appeared to be a paraplegic that was possibly deaf but she spoke very clearly. The interpreter stood slightly behind me and signed a few things that I said. It was obvious from the get-go that this team was used to working together and had a fine-tuned rhythm to everything they did. Also joining us in the room was Patti, a nurse and Annie, the play therapist whose job was to distract Emily. Prior to us getting all situated, Dr. Kaitz asked if Emily like dogs and that maybe her dog could come in for a visit when we were done.
Emily layed on her tummy like she was getting ready for a photoshoot and watched as Annie blew bubbles. It was all well and good until the others moved in and started to hold her down. It didn't take more than a minute or two for them to rub some numbing cream on the back of her calves (not her thighs/hips like I originally thought) and to give the Botox injections. She turned on the tears and was more than a bit upset that she was being held down. I think being held down bothered her more than the shots themselves. This is a girl that enjoys her freedom!
After the shots, I gave her a big hug and helped her down from the table. As I turned around, I noticed a beautiful black lab had entered our room and was sitting in front of Dr. Kaitz. (Wow, she's quick!) She introduced Emily and I to Travis (her assist dog) and Emily hugged him and loved petting him. It wasn't long after that that Emily was giving everyone high-fives and blowing kisses!
We played for a few minutes in the toy room and said goodbye to everyone before we joined Grandma in the lobby.
In less than an hour after we landed our parking spot we were back on the road. Em was feeling fine so the 3 of us even ventured across town to hit the Once Upon a Child store to grab some new winter clothes for Miss Em. Here are some pictures of the Botox Hat & Boot Queen from tonight... she's very proud of her new hat and Land's End boots that we scored for $6! Proud enough to wear them with her PJs tonight while watching her favorite videos.
Wednesday, November 05, 2008
Em's Update
I haven't posted much lately as far as Em's developments or funny stories. Em will be 2 1/2 next week. She's still fairly quiet and doesn't have a whole lot of words under her belt but we're picking up speed. She's starting to combine words and signs to get her point across and we're getting very good at playing charades. She loves to "tell" stories about things that have happened and loves to make you laugh with a funny story. She'll tell the same story over and over again as long as she's getting a reaction from you.
What signs (sign language) does she know?
more • milk • eat • mommy • daddy • bath • drink • stinky • potty • big • flower • swing • table • ball • sleep • all done • cereal • baby • friend • play • red • blue • yellow • green • bird • dirty • orange • banana • car/truck • and I'm sure there's a lot more that I'm forgetting
What's she saying now? (In order of appearance)
Baa • Bow • BowWowWow • What is that? • What is this? • Wa-Wa (all gone) • Are you ready? • Cheese! • Josh • hi • bye • Whoa! • Wow! • Mom • Mommy • Dad • Daddy • RyRy • Papa • pst • Nana • Shell • Lalalalala (Laura) • Oww! • babies • uh-oh • no • Babby (Abby) • Babby (Debbie) • DooDoo (ChooChoo/Train) • Mommy/Momma (Amy) • bup bup bup weeee (up a ladder or steps, wee going down) • boom boom boom (going down each step) • beebeebee (school bus) • Deedee (Jesus) • away • ning-ning (ding-ding/referring to a bell or clock chimee) • nes (yes) • doedoe (donut)
Her new games (she's a big teaser):
• We frequently say the letters of the alphabet while we're driving somewhere. I say each one and sign it and she tries to repeat it and sign it back to me. We USED to be able to make it all the way through from A to Z and occasionally we still do. However, she's started a new game of following me and then a few letters in she seriously says/signs "WaWa (all done)." So I stop... she gives it a pregnant pause and then giggles and starts back at A all by herself.... then cuts me off if I join in again.
• Emily still loves to play under blankets. I was getting her clothes set out the other morning while she was playing in her crib and when I looked over she had her blankie draped totally over her body. I started playing along with her... "Where's Emily? Where could she be? Emily, are you in the living room?" I had to chuckle when I heard a muffled voice from under the blanket respond with a shaking head and "Noooo". I tried again with a few other answers and each was met with a "no" until I asked if Emily was hiding under her blanket. It got really quiet but the blankie was nodding yes in response.
• Tom loves teasing back with Emily. This involves another set of yes/no questions.
Tom: "Can I tickle your toes?"
Em: "Noooo."
Tom: "Can I mess up your hair?"
Em: "Noooo."
Tom: "Can I nibble on your ear?"
Em: "Noooo."
Tom: "Can I love you?"
Em: (Leans in for a big ole hug and/or kiss and now she's also starting to add "yessss".)
She likes:
• blowing bubbles • jumping in leaves • going up and down stairs • hopping on her knees on our bed • playing under blankets • trains and railroad tracks • lining her toys and food up in a row like train cars • watching Elmo, Barney (ugh!), SigningTime DVDs, and Baby Einstein • visiting with Nana's scarecrows each morning and night she's there • playing with the kids at the sitter's • re-enacting funny stories • building tall towers • building with blocks • helping with chores around the house • quiet time with books • playing with her dolls and stuffed animals • playing dress-up • looking at picture books, picture screensavers and videos of our family and friends on our laptops • playing and visiting at speech therapy and physical therapy • playing independently in her bedroom • ransacking her dresser drawers and then putting things back almost where they came from • babies (real ones) • Asian kids and people (probably remind her of her Kazakh heritage) • looking for the moon in the sky each morning and night • dancing with her daddy • loving and teasing our cat • wrestling with mommy and daddy • playing with the other kids at church • playing chase • playing with her cousins, Brooke and Logan and their parents • pointing out which direction we should turn when we go places (and she's usually right!) • and getting upset when we don't turn to go somewhere she thinks we should be going!
Speech and Physical Therapy Updates
We go to speech therapy and physical therapy (PT) once a week right now. She loves to go to both and gets a little worked up if she sees us going by the buildings without stopping in for a visit. The staff at both places are really sweet and Emily seems to have her own fan club at both places. As a toddler, it's hard to say how much of Em's speech developmet is due to therapy as much as it is just another phase in her life. Therapy sessions are currently a lot of play but Audrey, her therapist, is able to watch to make sure she's using the correct (and balanced) facial muscles and positions to form words as she's developing and learning words.
We've been blessed to receive early intervention funds recently through BCMH that are covering her therapies when our insurance runs out. That was a big problem for us last year because our insurance only covered 20 visits of each type of therapy per year. She ran out of PT coverage and then had a big growth spurt and got tight (tippy-toed) again and then we had to wait to pick up again after the new year started.
Emily is scheduled for her first Botox injections (talked about in my Aug. 26th blog entry) at Children's Hospital next week and I hear they might be increasing PT to twice a week after her shots. Em's doctor felt Emily would be a prime candidate for this type of treatment and I'm praying it's not painful for her and that it does the job. Since early this summer I've noticed her feet starting to turn in when she walks and she running with the telltale cerebral palsy "scissor gait".
We have been so blessed to be given the opportunity to love on this beautiful little girl! I thank God every day for putting her in our lives.
Tuesday, November 04, 2008
Trick-Or-Treat!
Happy 65th Birthday, Papa Gaston!
We met up with Aunt Shel, Aunt Laura, Nana and Papa at Ruby Tuesday's last Thursday to celebrate to Papa's 65th birthday. Woohoo! Fun times! I'm not sure what's going on in the picture below but apparently Emily is sharing the secret of life with us or something else as equally important.
Friday night brought Beggar's Night to our town and that's exactly what it seems at times. What's with those parents that wheel a 6-month-old kidlet up to your steps in a stroller? They can't even eat the candy much less hold the bucket their parents have propped up on their laps! My sister had a great idea last year and considered handing out teething biscuits to those kiddos. Bummer for their parents if they thought they were going to score all the goods! Oh, and you have to love the kids that come up with 2 buckets and say 1 is for "the baby" or for my sister's who's sick at home. Next year I'm asking for photo IDs, birth certificates and sick notes from their parents.
Thanks to cousin Rachel, Emily got to dress up as a ladybug this year. We tried the outfit on again earlier in the week and Emily was very proud of herself. She grinned from ear to ear and did a happy dance in front of the mirror in her room and when we went to the living room to show Daddy, she did another happy dance, admired her wings (while going in circles like a dog chasing it's tail) and wasn't at all happy when it was time to take her outfit off so we could eat supper. (Wings, booster seats and tacos just don't mix!)
This was Em's first official year of trick-or-treating. Last year she wore a pumpkin shirt and "helped" pass out candy. This year, she helped pass out candy to the kidlets and then when it slowed down a bit we took her to 3 of our neighbors houses to get in on the action.
Even before the other kids started walking the neighborhood Em was a bit wired. Mom and Dad had their camera out (thanks for the pictures!) but it was near impossible to get her to hold still. Breaking out the bubbles helped a bit but it too was short lived.
She seemed to have a really good evening and enjoyed seeing all the people. Her favorite outfits of the evening where Thomas the Train, doggies, kitties, princesses, and a homemade alligator. She was pretty concerned about the kids with messy face paints and basically told them they were messy. (Gotta love it!) She even did pretty well with the scary outfits until one of them decided to say "Trick or Treat!" with the help of a voice changer. It scared the bajeebies out of her! After that, she didn't want anything to do with the scary characters. She kept doing her sign for "scary" which looks a bit similar to "cold" (picture shivering but with a scared face).
Emily scored 2 big tootsie rolls, 2 suckers, a kit kat bar and a twizzler... more than enough for a 2-year-old that hasn't had that much candy (that I know of) in her entire life!
Saturday, November 01, 2008
Bears, Chili Dump, Leaf Piles
Not only has Emily been thrilled to be allowed to wear her hat and gloves in the house, but she was pretty pumped to be able to share them with her bears the other day as well. Here are a few pictures of her bears and a few minutes of her sharing her fruit loops with them the other day.
Oct. 19, 2008 - Chili Dump at G'ma and Papa Gaston's House. According to my sister's blog, here's what a "chili dump" is.
Nov. 1, 2008 - We had incredible weather today for the first day of November. We went out shortly before lunch and raked up a small pile of leaves to play in. She jumped in the leaves as I was piling them up and then was thrilled when I decided to plot down along with her. She had a blast covering me up and then helped me pick leaves out of my hair when we were done.
Oct. 19, 2008 - Chili Dump at G'ma and Papa Gaston's House. According to my sister's blog, here's what a "chili dump" is.
Here are the "official" instructions as best as I could tell:
1) Each person shall bring to the party a serving of chili. Supposedly, this is all homemade chili uniquely from each family's recipe.
2) Once at the party each invitee "dumps" their portion of chili into a large pot or roasting pan in this case.
3) Stir together, and everyone has a new chili soup to try. Although don't ask for the recipe ... it is very, very cumbersome.
The kids playing on Mom & Dad's swingset. Aunt
Connie was performing hat checks as each kid went
down the slide. Em's was a bit small and kept
popping off her head.
Connie was performing hat checks as each kid went
down the slide. Em's was a bit small and kept
popping off her head.
Nov. 1, 2008 - We had incredible weather today for the first day of November. We went out shortly before lunch and raked up a small pile of leaves to play in. She jumped in the leaves as I was piling them up and then was thrilled when I decided to plot down along with her. She had a blast covering me up and then helped me pick leaves out of my hair when we were done.
Here's Em demonstrating her sign for bath...
she was pretending to take a bath in the leaves!
And then she stood up and took a dive in them...
she was pretending to take a bath in the leaves!
And then she stood up and took a dive in them...
Wednesday, October 22, 2008
Corn, Pumpkins and Straw, Oh My!
Heads-up... for those of you that check our blog regularly... I posted 2 entries tonight! (and 2 entries last night)
So... as you'll learn in the next entry, the weather was so nice on Saturday that we decided we needed to get out of the house as a family and enjoy it. After playing with mommy's hairbands and blowing bubbles in the backyard, we packed up and headed out for Leeds Farm. We had a blast and hope we can make it back next year!
Leeds Farm is in Ostrander, OH and has all sorts of fun activities...
You can pet and feed the goats.
So... as you'll learn in the next entry, the weather was so nice on Saturday that we decided we needed to get out of the house as a family and enjoy it. After playing with mommy's hairbands and blowing bubbles in the backyard, we packed up and headed out for Leeds Farm. We had a blast and hope we can make it back next year!
Leeds Farm is in Ostrander, OH and has all sorts of fun activities...
You can pet and feed the goats.
Take a peek at the young calves.
Walk hand-in-hand with your mom from barn to barn.
Check your height if you'll stand against the wall long enough!
Play in the giant cornbox for nearly an hour!
Rope Mommy into playing in the giant cornbox with you for
nearly an hour while Daddy played the role of Papa-razzi... get it?
(We're making popcorn sounds in this picture!)
nearly an hour while Daddy played the role of Papa-razzi... get it?
(We're making popcorn sounds in this picture!)
Check out the giant pumpkins and figure out
which one is more comfortable to sit on.
which one is more comfortable to sit on.
Play on the slides and in the straw with Mommy.
Land at the bottom of the slide in a
giant pile of straw and giggle loudly.
giant pile of straw and giggle loudly.
Discover the joy of going down
the slide face-first into the straw.
the slide face-first into the straw.
Roll in the straw a bit.
And hope Mom comes to help me get up
because this straw is slippery stuff and
there are other kids waiting to come down!
because this straw is slippery stuff and
there are other kids waiting to come down!
Woohoo!
(Cleanup wasn't nearly as bad as I expected... we only found a few kernels of corn when we got home and another 6 in Em's coat pocket at church the next morning.)
(Cleanup wasn't nearly as bad as I expected... we only found a few kernels of corn when we got home and another 6 in Em's coat pocket at church the next morning.)
Headbands and Bubbles
We played around the house on Saturday morning and while I was working on a project in the kitchen, our daughter was working on her own project in the bathroom drawer where we keep our brushes and my hair accessories...
Just another fine example of the abundance
of hairbands. Count 'em... 4!
of hairbands. Count 'em... 4!
After playing in the house, we realized how nice the weather was outside (well, that and Emily eyed the bottle of bubbles in the kitchen), so we opted to head out and get some bubble-blowing in. Daddy "snuck" up on us with the camera and caught some of the action.
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