Lizzy went to a minor league baseball game(Saturday) and Reed Michael's 17th birthday party. (Sunday).She has had a great SUMMER. One more big trip and we will probably be home bound till after winter. She has even been shopping at Walmart! Lizzy had a great visit with Dr. Schroth and the Muscle clinic staff. She is very happy to see how great Lizzy is doing. We did fasting amino testing to see how Lizzy is doing and any diet changes. They took 10ccs of blood for that and some other testing DR.Schroth ordered.Lizzy's movement is increased a lot in the passed 6 months. It was over all a GREAT Visit. One of the best ever. Her curve is at 20 degrees and that was still great they said but we are watching it close. Lizzy is always wiggling some how so the nutritionist Erin said she thinks Lizzy is burning a lot of cals from all her movement. She is on the high end of cals for SMA but doing great. Still a peanut but she looks bigger than she is. They did her weight twice because they did not believe how much she weighs. They all said she looks great, sounds great and moves great. Lizzy went to MDA lock up in Peoria and had a great time yesterday . She had pics taken with the UAW union President Rick Doty and Jonny Rovatti (Magician) . She stole their hearts .
The MDA Telethon is this coming Sunday!!! She is so excited!!
She also gets to see her friend Sophia from the Chicago are and staying with her Grandma Pat soon. We also have a trip to Kentucky and get to see lots of Lizzy's friends.This has been a great summer for Lizzy!!
Lizzy is getting her Max Easy Chair size 2 FINALLY. It may take a few months but its all working now. It was ordered for her almost a year ago and now its finally getting taken care of!! I got a call from BL on Tuesday and Lizzy gets the last one. John our rep is getting it for us. BL is hoping to get another company to build her the frames but at present Lizzy got the last one since hers was ordered over a year ago. So, I can give back the loaner ones we have from Laura . Other kids can use them that have such a tough time like us getting one like we have. Laura is such an awesome lady!!
Things seem to finally to be falling in place.
We fly to CA in October 7 and are staying an extra day because the flights were 100+ dollars for that wed . It will be so exciting to see Molly and Andy!! ahhhh we have missed them so much!! They had their 50th wedding anniversary a few weeks ago. They are such great people. I think we are more excited to see them than our doctor visit!! LOL
Hope you all enjoying your summer.
Prayers to Charlie (Lizzy's boyfriend) he is sick.
Oh and I am starting another diet after Monday. I hope this one works.
Thursday, August 28, 2008
Friday, August 15, 2008
Lizzy in the news
Elizabeth is beating the odds
By Peg Reynolds, Staff ReporterPublished: Friday, August 15, 2008 1:28 PM CDT
Pontiac Fire Department will “Fill the Boot” again this weekend to help Jerry’s Kids who are afflicted with muscular dystrophy. The firemen will be accepting donations between 10 a.m. and 1 p.m. Saturday at Pontiac Wal-Mart and Sunday at Big R. With the firemen is Elizabeth Hallam, of Pontiac, the Goodwill Ambassador for the MDA for Central Illinois. She suffers from spinal muscular atrophy type 1. Firemen from left are Scott Runyon, Todd Gould, Andy Vitzthum and Jace Weaver. (Photo provided)
There is a 4 1/2-year-old Pontiac girl who is surpassing a doctor’s prognosis of not celebrating her second birthday.Elizabeth Lee Hallam, born Sept. 29, 2003, was diagnosed with SMA (spinal muscular atrophy) type 1 on May 11, 2004. Her parents, Christen Huette and Brandon Hallam, learned that this was the number one genetic killer of children under the age of two.SMA is a group of inherited and sometimes fatal diseases that destroys the nerves controlling voluntary movement. This affects crawling, walking, head and neck control and even swallowing.
Two months after Elizabeth was diagnosed, she was placed in a clinical study at Stanford, Calif. The study is funded by MDA, but the cost of the trip, their lodging and Elizabeth’s medication, which costs between $200 and $300 a month, are not. The mother and daughter must travel to the California hospital every four months for follow-ups.“It’s hard to get the money, but we do it for Lizzy,” Huette said.They discovered early in the study that Elizabeth was not on a placebo, but was taking the medication hydrozyurea, which was developed by Dr. Ching Wang.
“Her movement increased after taking the medication for two weeks,” said her mother. “When she was first diagnosed, she didn’t move the bottom part of her body at all. She was moving her legs, starting to bend her legs while laying flat on the floor, and she looked like she had more energy.”Elizabeth started to lose her ability to swallow after a case of strep throat soon after their first trip to Stanford.“She got really ill and would gag when eating or refused to eat at all. Our doctor's nurse told me, ‘There is nothing more doctor can do for Elizabeth.’ Their opinions have since changed because of how well Elizabeth has been doing for the past three years.”
A nissen/g-tube saved Elizabeth's life, her mother said. A swallow study had showed Elizabeth was silently aspirating on liquids.Elizabeth requires around-the-clock care, which is shared between family members. She has physical therapy once a weekHuette said she owns a van, but it does not have a wheelchair lift. A ramp was built at their Pontiac home by RAMP. She is inquiring into a home school video conferencing live feed, which is funded by a foundation. Her daughter can not mix daily with other school-age children, as a simple illness would land Elizabeth in the hospital for two weeks, or worse.
Huette said her parents, Herb and Jeanne Huette, have helped her and Elizabeth through their trials, as have the other members of the family.Huette also praises the efforts of Senator Barack Obama and State Sen. Dan Rutherford, R-Chenoa, who have both come to her rescue when she battles “red tape.” “I have them both on speed-dial,” she said.The Pontiac Fire Department is another group that is helping Elizabeth fight her battle. They will conduct their second and third “Fill the Boot Drive” this weekend. On Saturday they will be at Wal-Mart from 10 a.m. to 1 p.m. Sunday’s collections will be at Big R from 10 a.m. to 1 p.m. Monetary donations collected for the MDA drive will stay in this area, a press release said.
By Peg Reynolds, Staff ReporterPublished: Friday, August 15, 2008 1:28 PM CDT
Pontiac Fire Department will “Fill the Boot” again this weekend to help Jerry’s Kids who are afflicted with muscular dystrophy. The firemen will be accepting donations between 10 a.m. and 1 p.m. Saturday at Pontiac Wal-Mart and Sunday at Big R. With the firemen is Elizabeth Hallam, of Pontiac, the Goodwill Ambassador for the MDA for Central Illinois. She suffers from spinal muscular atrophy type 1. Firemen from left are Scott Runyon, Todd Gould, Andy Vitzthum and Jace Weaver. (Photo provided)
There is a 4 1/2-year-old Pontiac girl who is surpassing a doctor’s prognosis of not celebrating her second birthday.Elizabeth Lee Hallam, born Sept. 29, 2003, was diagnosed with SMA (spinal muscular atrophy) type 1 on May 11, 2004. Her parents, Christen Huette and Brandon Hallam, learned that this was the number one genetic killer of children under the age of two.SMA is a group of inherited and sometimes fatal diseases that destroys the nerves controlling voluntary movement. This affects crawling, walking, head and neck control and even swallowing.
Two months after Elizabeth was diagnosed, she was placed in a clinical study at Stanford, Calif. The study is funded by MDA, but the cost of the trip, their lodging and Elizabeth’s medication, which costs between $200 and $300 a month, are not. The mother and daughter must travel to the California hospital every four months for follow-ups.“It’s hard to get the money, but we do it for Lizzy,” Huette said.They discovered early in the study that Elizabeth was not on a placebo, but was taking the medication hydrozyurea, which was developed by Dr. Ching Wang.
“Her movement increased after taking the medication for two weeks,” said her mother. “When she was first diagnosed, she didn’t move the bottom part of her body at all. She was moving her legs, starting to bend her legs while laying flat on the floor, and she looked like she had more energy.”Elizabeth started to lose her ability to swallow after a case of strep throat soon after their first trip to Stanford.“She got really ill and would gag when eating or refused to eat at all. Our doctor's nurse told me, ‘There is nothing more doctor can do for Elizabeth.’ Their opinions have since changed because of how well Elizabeth has been doing for the past three years.”
A nissen/g-tube saved Elizabeth's life, her mother said. A swallow study had showed Elizabeth was silently aspirating on liquids.Elizabeth requires around-the-clock care, which is shared between family members. She has physical therapy once a weekHuette said she owns a van, but it does not have a wheelchair lift. A ramp was built at their Pontiac home by RAMP. She is inquiring into a home school video conferencing live feed, which is funded by a foundation. Her daughter can not mix daily with other school-age children, as a simple illness would land Elizabeth in the hospital for two weeks, or worse.
Huette said her parents, Herb and Jeanne Huette, have helped her and Elizabeth through their trials, as have the other members of the family.Huette also praises the efforts of Senator Barack Obama and State Sen. Dan Rutherford, R-Chenoa, who have both come to her rescue when she battles “red tape.” “I have them both on speed-dial,” she said.The Pontiac Fire Department is another group that is helping Elizabeth fight her battle. They will conduct their second and third “Fill the Boot Drive” this weekend. On Saturday they will be at Wal-Mart from 10 a.m. to 1 p.m. Sunday’s collections will be at Big R from 10 a.m. to 1 p.m. Monetary donations collected for the MDA drive will stay in this area, a press release said.
Thursday, August 7, 2008
Our SMA friend week-end
We went to Faith Lodge in Wisconsin and met with 7 other families that deal with SMA on a daily basis. It was a great week-end . Lizzy had a blast. It was so great being able to cough her or suction her in front of people and not have to deal with all the stares.
Lizzy has met some great kids she she refers to as her friends now. She was a hit herself. I was able to share some of her some we do some things for Lizzy that I know will help some of the other families.
I learned a few new tricks from Jen Bolen Jerika's mom.
The lodge was absolutely beautiful . Andrea's Mom and friends prepared ALL our meals and Andrea had activities lined up.
Lizzy loved horse back riding. It was so great to just get away and have a great time with great people.
Hopefully this will turn into a yearly vacation.
Lizzy has met some great kids she she refers to as her friends now. She was a hit herself. I was able to share some of her some we do some things for Lizzy that I know will help some of the other families.
I learned a few new tricks from Jen Bolen Jerika's mom.
The lodge was absolutely beautiful . Andrea's Mom and friends prepared ALL our meals and Andrea had activities lined up.
Lizzy loved horse back riding. It was so great to just get away and have a great time with great people.
Hopefully this will turn into a yearly vacation.
Friday, July 18, 2008
Well I made it to 50. Fat, sassy and now old. LOL That's me these days!!
Lizzy met Senator Rutherford today. He was pretty excited to meet her. We got some pics and she told him "Thank you for helping her get her purple power chair" She was shy... LOL Lizzy shy!! His staff seemed excited. We told him we have his asst Peg on speed dial. Its was a pretty good visit. She got a little raspy for a few minutes but I think it was the humidity today. She has been fine since we got home.
I got a phone call from Halli tonight from Iceland. He told me Ragnar is so much stronger doing the PBA and shocking the doctors! That is so great!! We had a great talk. He said I talk fast.... I always have talked fast!! LOL . I loved talking to him!!
Well, I have to get Lizzy to bed. She had a busy day.
Caitlyn's party is tomorrow so I must also rest up for a 5-6 years at her party. Lizzy is going also of course.
Lizzy met Senator Rutherford today. He was pretty excited to meet her. We got some pics and she told him "Thank you for helping her get her purple power chair" She was shy... LOL Lizzy shy!! His staff seemed excited. We told him we have his asst Peg on speed dial. Its was a pretty good visit. She got a little raspy for a few minutes but I think it was the humidity today. She has been fine since we got home.
I got a phone call from Halli tonight from Iceland. He told me Ragnar is so much stronger doing the PBA and shocking the doctors! That is so great!! We had a great talk. He said I talk fast.... I always have talked fast!! LOL . I loved talking to him!!
Well, I have to get Lizzy to bed. She had a busy day.
Caitlyn's party is tomorrow so I must also rest up for a 5-6 years at her party. Lizzy is going also of course.
Thursday, July 17, 2008
Great news on the post below. The Grandmother got custody today. I just hope she is proactive and helps the baby quickly.
Lizzy has a date for a picture tomorrow with Senator Rutherford!!
They have help us with so many issues. They helped get approval on Lizzy's power chair and SEVERAL things. His asst Peg is the bomb!!
Well time to get Lizzy to bed.
I will try to update tomorrow.
Lizzy has a date for a picture tomorrow with Senator Rutherford!!
They have help us with so many issues. They helped get approval on Lizzy's power chair and SEVERAL things. His asst Peg is the bomb!!
Well time to get Lizzy to bed.
I will try to update tomorrow.
Wednesday, July 16, 2008
I just had to share this tragic event.
A father and mother murder/suicide in Colorado. The baby was diagnosed with SMA after they died.
Here are the articles. Please write the media!! This is a miscarriage of justice. This is one of the saddest stories I have ever heard.
Please pray the grandma gets custody and helps this baby before its too late!! They do not mention that the baby had SMA . A very good friend of mine was contacted by the grandmother yesterday . http://www.rockymountainnews.com/news/2008/jul/03/daughter-dead-couple-had-multiple-leg-fractures/?printer=1/
http://www.9news.com/rss/article.aspx?storyid=94862
http://www.kktv.com/home/headlines/22762484.html
On a good note Lizzy had a blood test today and only one poke!! The nurse Kay at DR. Hough's office said Lizzy has more muscle on her arms and the vein was easy to find. whoooo whooo hoooo yeah
On bad note I have the dreaded poison ivy !!!! Got it at Dawn's Saturday I guess. I dont know where for sure we got it but Paul and I both have it and no we werent we not rolling around in the weeds together. We are too old even though it sounds like fun!!
A father and mother murder/suicide in Colorado. The baby was diagnosed with SMA after they died.
Here are the articles. Please write the media!! This is a miscarriage of justice. This is one of the saddest stories I have ever heard.
Please pray the grandma gets custody and helps this baby before its too late!! They do not mention that the baby had SMA . A very good friend of mine was contacted by the grandmother yesterday . http://www.rockymountainnews.com/news/2008/jul/03/daughter-dead-couple-had-multiple-leg-fractures/?printer=1/
http://www.9news.com/rss/article.aspx?storyid=94862
http://www.kktv.com/home/headlines/22762484.html
On a good note Lizzy had a blood test today and only one poke!! The nurse Kay at DR. Hough's office said Lizzy has more muscle on her arms and the vein was easy to find. whoooo whooo hoooo yeah
On bad note I have the dreaded poison ivy !!!! Got it at Dawn's Saturday I guess. I dont know where for sure we got it but Paul and I both have it and no we werent we not rolling around in the weeds together. We are too old even though it sounds like fun!!
Monday, July 14, 2008
July and being 50
Well I will be a half a century old here in a few days . July 19 I will be
50. I was born July 19, 1958 . Wow, it hard to believe what I have lived through and it all seems like yesterday. I remember being 13 and working at the Root beer Stand and car hopping for 50 cents an hour. I remember all those boyfriends I had. Which after I turned 14 were many. Every one meant something. The Doobie Brothers Concert, Blue Oyster Cult, Black Oak Arkansas, Led Zeppelin, hip hugger blue jeans, crop tops, and moccasins. My marriage to my husband was Dec 1974. I was 16!! My first daughter Dana in 75 . Then my Dawn in 79, Jessica in 82 and my baby Christen in 83.
So much......I have lived. Paul is still with me so I must of done something right. We loved riding the harley ,buying leather and partying. It was great to be hot and feeling the wind in my face after the late 30s hit and my kids were bigger and we did things together again alone.
I remember riding Chuck one of our horses and him getting close to home after riding the section and ending up in the barn in his stall because he would take off on me. Riding the motor bike and my brother chasing me on gravel roads to take the motor bike away!! Partying oh my gosh I loved to party LOL My gosh the memories. I was a rebel.
Then about 5 years ago a little miracle entered my life and my whole life changed. She has showed me how not to take life for granted. She has taught me so much. Life feels totally different. Things that used to stress me out are "poof "nothing anymore. I had to teach myself patience. I surely was not born with patience but I have learned some in the past few years. Most of all I learned not to give up.
My old friends gave up waiting on me and I lost them . I had to make sure Lizzy was going to be okay. They just didnt get it. How I could put a child first in my life and a grand-child at that. I had to fight to save her.
Still I worry about Lizzy but not as much as I used to. My brother was here from Kuwait and took me out to eat Saturday and I left for a few hours and it felt so good to be out for awhile. Then I started to worry so I called Lizzy (at home with Christen) and she wanted me home since she was tired . I did not even think twice I went home.
Since she entered my life..... my life really means something to her and many others. God put me here I feel to help fight for her and other kids with Spinal Muscular Atrophy. I do what ever it takes to give her the healthiest happiest life as possible.
So, yes my 50 years has gone by fast but I am content. Love makes you that way.
Have a great summer.
50. I was born July 19, 1958 . Wow, it hard to believe what I have lived through and it all seems like yesterday. I remember being 13 and working at the Root beer Stand and car hopping for 50 cents an hour. I remember all those boyfriends I had. Which after I turned 14 were many. Every one meant something. The Doobie Brothers Concert, Blue Oyster Cult, Black Oak Arkansas, Led Zeppelin, hip hugger blue jeans, crop tops, and moccasins. My marriage to my husband was Dec 1974. I was 16!! My first daughter Dana in 75 . Then my Dawn in 79, Jessica in 82 and my baby Christen in 83.
So much......I have lived. Paul is still with me so I must of done something right. We loved riding the harley ,buying leather and partying. It was great to be hot and feeling the wind in my face after the late 30s hit and my kids were bigger and we did things together again alone.
I remember riding Chuck one of our horses and him getting close to home after riding the section and ending up in the barn in his stall because he would take off on me. Riding the motor bike and my brother chasing me on gravel roads to take the motor bike away!! Partying oh my gosh I loved to party LOL My gosh the memories. I was a rebel.
Then about 5 years ago a little miracle entered my life and my whole life changed. She has showed me how not to take life for granted. She has taught me so much. Life feels totally different. Things that used to stress me out are "poof "nothing anymore. I had to teach myself patience. I surely was not born with patience but I have learned some in the past few years. Most of all I learned not to give up.
My old friends gave up waiting on me and I lost them . I had to make sure Lizzy was going to be okay. They just didnt get it. How I could put a child first in my life and a grand-child at that. I had to fight to save her.
Still I worry about Lizzy but not as much as I used to. My brother was here from Kuwait and took me out to eat Saturday and I left for a few hours and it felt so good to be out for awhile. Then I started to worry so I called Lizzy (at home with Christen) and she wanted me home since she was tired . I did not even think twice I went home.
Since she entered my life..... my life really means something to her and many others. God put me here I feel to help fight for her and other kids with Spinal Muscular Atrophy. I do what ever it takes to give her the healthiest happiest life as possible.
So, yes my 50 years has gone by fast but I am content. Love makes you that way.
Have a great summer.
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