Thank you for giving Lizzy the best birthday ever

THANK YOU ALL FOR THE BIRTHDAY WISHES FOR LIZZY!!!!!! SHE HAD A GREAT DAY!! She had a small little gathering birthday party on Sunday with cake and ice cream. Yesterday, she had phone calls with birthday wishes from all over the country from 9:30 Am -10pm last night. She had ecards (so many ecards)She had her boyfriend Charlie sing to her on the phone. She had our friends from California Molly and Andy sing to her. It was quite a day . She had some presents in the mail from so many people and more coming!! She even had her teacher(From Last year) stop by the house last night and bring her a present. Lizzy was dressed in her (fancy Nancy Dress LOL )Thank you ALL for what you do and have done for Lizzy. I am truely touched.I still can not believe she is 5!!

Miracle child with SMA Turns 5 today

Our miracle child and little wild child Elizabeth Lee Hallam turned 5 years old today. The specialist who diagnosed her did not give her life expectancy to 1 1/2 years old and at the most 2 years old. So much for him knowing anything. If we would of sat back and listened to him Lizzy would not be here today.
We got Lizzy out to Stanford a month after she was diagnosed and that was the best choice we ever did make. Thank you DR.Wang. Thank you DR. Willam Hough for believing in us and helping us get what we need for Lizzy. You are always there for Lizzy.
My "little princess diva" turned 5 today and is the most wonderful little girl! She is a fighter, she is ornery, she is determined and she is my heart and soul.
We have been through so much the past 5 years and now looking at the future is easy. We used to be glad we got through a day. She is so strong and so smart besides beautiful.
I was telling Christen (Lizzy's Mom) today looking at what things were 5 years ago and said " I turned in my leathers for helping Lizzy ". I gave up my life the way it was to help her and I believe I am a better person for it. I always did have a heart but I have meet so many people that are so great. I have Real friends now. Things in every day life that used to totally tick me off mean NOTHING anymore. There is so much meaning now in the phase
"Dont sweat the small stuff". My life has meaning and purpose.
Thank you all that helped me with Lizzy. Thank you DR.Schroth , Dr . Wang, DR, Hough, Lisa Watson and all the parents that have helped us through this whole journey!!!!!
Having your support and guidance helped us so much helping Lizzy!!
www.our-sma-angels.com/elizabeth

Princess feeling a bit better tonight

The Princess is doing better today. She is not whining or throwing fits. She is still getting gunk out and still not over this sinus infection yet.
She hopefully will be able to have her 5th birthday party tomorrow.
Christen went to the stride and ride MDA event in Chicago and had a great time. Lizzy and I were unable to attend of coarse. Christen got to meet Chloe and her Mom Kathleen. Christen said Chloe was just the cutest. It would of been so great if we were able to go. Lizzy just could not this time.
Our own area Stride and Ride event will be in two weeks from today and it will be a day after we get home from Stanford. So, I am not sure if we will be able to attend or not.
The Doebberts made it safely to their MAW trip in Florida!! Hope they have just a great time!!
Mary Kate is still pretty sick so extra prayers for her. Addison is also not feeling well and Dani is doing better. Stella is home now. So prayers for them. MJ said she was not feeling good either so I hope she feels better too!!
Pray for my princess so she is able to enjoy her birthday party tomorrow!!
www.our-sma-angels.com/elizabeth

Update on Lizzy

Thank you for the support and the prayers.
Lizzy is still getting thick gunk up from a sinus infection. She has been so whiny, yelling and throwing major fits . Poor sweetie is just miserable. Lizzy is on every three treatments ,extra fluids, antibiotic and will NOT NAP or take extra bipap.
She is a "tough Cookie " That is for sure.
Christen (Lizzy's Mom) is going to the Chicago MDA walk and leaving tonight to spend the night with Billie her kids Payton and McKinsey. Lizzy and I are staying away from everyone so she is well for her party on Saturday.
I just heard Aubrey is sick too and dropped pretty low o2 today and Mary Kate was intubated. Sophia S is not feeling well either. Prayers for all the sick kids. Dani, Gabby and Stella are doing better.
Sophia D is doing her leaving for her Make a Wish tomorrow morning!! Hope she was a great week!! Whoooooo hooooo Sophia!!

For more info on SMA Type 1 . Please Read Lizzy's web-site.
www.our-sma-angels.com/elizabeth

My girl is not feeling well.

Lizzy has more secretions spiked a temp and has been coughing up plugs. Here we go ugh...... I have upped her treatments have her on extra fluids and she is starting Zithermax today. So, please....... prayers our way so I can manage this at home. So I feel no sleep coming on. But that is okay Lizzy is worth every moment of extra anything!!

On a good note I lost 3 1/2 pounds in a week!!! I can not believe it. I am shocked. Yeah me!!

Got the confirmation for our Stanford appt today. We can not wait to see Molly and Andy!! We also meeting up with the Goodsons!!

Many prayers for ALL the sick kiddos!!

Hi Everyone:Please keep Mary Kate Bigelow in your prayers. She is at St. Paul Children's hospital right now. Donna took her in Tuesday night after fighting a virus all week with fever, thick secretions & high heartrate. She is on bipap and is receiving IV antibiotics.Please pray for a quick turnaround. Also prayers for Donna(her Mom) ...she had been up all night.

They are thinking about intubation.

Mary Kate is a Type 1/ 2 and is 6 years old from Minnesota

Official 2009 Spinal Muscular Atrophy Calendar

Hi everyone:

Just thought I would give you the Official 2009 SMA Calendar Update. As of today the calendar is up and is available on Cafe Press in the B4SMA store. Once again, the calendars will be $20.00 with the profits going to Marshall's Miles and SMA Support. It is http://www.cafepress.com/b4sma/1826918This calendar was designed to raise awareness and funds for Spinal Muscular Atrophy.Buy your OFFICIAL 2009 SMA Merchandise today! Proceeds from merchandise (other than the calendar) benefits B4SMA! For Merchandise, http://www.cafepress.com/b4sma/3677699This year, there are almost 140 kids that are featured. Thanks to Logan P's family for suggesting a montage, so in order to feature each kid individually, MJ has created a montage at one true media. Watch the promotional video http://www.onetruemedia.com/shared?p=69500ee4ac7d16e9a6cea1&skin_id=1603&pid=624&utm_source=otm&utm_medium=text_url . I encourage you to bookmark this montage for your convenience. For those of you that have blogs, please post this information to hopefully get more people interested in the calendar this year and to create more awareness for Spinal Muscular Atrophy. There will not be a cheat sheet this year because once you watch the montage, you will not be able to forget these precious faces.

'Tis the season

Lizzy and I have decided its best for us to stay home from the MDA walk in Chicago at Brookfield Zoo. She has some extra thicker secretions and I have upped her treatments and increased her nebs. She is not sick but I am making sure nothing becomes of this. I do not want to chance taking her to Chicago with 1200 people enrolled from the walk. Lizzy's Mom Christen and a friend of hers are going . Tis the season for the flu already !! The flu is out there I hear "Full force" and we can not get our flu shots till next week because they are not in yet here.. So its best to stay home in "our bubble" till her birthday party on Sunday. Then only to appointments after Sunday .
Then 7th of October we leave for Stanford to see DR.Wang . I want to make sure we are able to go. Keeping Lizzy healthy is my main goal!!
Just found out that RSV shots in IL will not be given until November. That is VERY scary flying with out a RSV shot for Lizzy.
Please watch the montage our friend MJ made of our CCK week-end . Its a great !!

http://www.onetruemedia.com/shared?p=6f360380c6e30c0f57131f&skin_id=1602&pid=624&utm_source=otm&utm_medium=email

Prayers for Dani, Stella, Gabby ,Leah and Lizzy (so she doesnt get sick!! )
Please visit her web-site !!
www.our-sma-angels.com/elizabeth


I apologize if I offended any-one with my previous posts. I had to vent I was very upset.

Spinal Muscular Atrophy Type 1 and milestones

I am better today:) some people came to my aid. I am so passionate about my beliefs on NIV protocol , AA diet and these kids in general.

Lizzy got her first birthday present in the mail today from the Salus family in Chicago. They have Sophia Type 1. They are a sweet family. So kind. We can not wait to get to spend time with them!! We have a MDA walk this week-end and then Stanford and we are done running all the time. Then we can meet up with them.
Lizzy will be 5 years old next Monday. What a great milestone. Its been quite a journey but I have gained a lot since it started. I have friends that are geniune and learned a whole different way of life. Things I used to take for granted I cherish now. I found this quote yesterday and its meaning is so true:
"I am the creator of my life's experience. Today and everyday I AM creating a life filled with joy, creativity, purpose, and fulfillment."
Prayers for Dani, Stella, Gabby and all the sick kiddos

I hate SMA...... I hate arrogant doctors that will not listen . I hate parents that will not listen to people and doctors that know what they are taking about.
Let me SCREAM !! This younger bunch of parents scare the crap out of me and their ways of caring for these precious wonderful kids.
Hello ....... I am venting here and super upset.
I want to be like that" cleaner dude "on tv and save all these kids. But instead of a pick up truck I need a jet and money....... I want to take care of them all . Oh.... I wish I could save them all!!
My heart hurts so bad. So many sick kiddos already in crisis with bad illnesses. The Flu has hit!!
God give me the strength so I can keep helping these people!!

Sunday

Lizzy had her neutrophils rechecked and they are awesome. Not sure why on her last blood test results she was little low but on a good note She is FANTASTIC. Her amino acids, essential fatty acids and just every-thing is GREAT. I can breathe..... Its self satisfiying to me to know what I feed her is helping her!! She never stops amazing me every day. My gosh I love her so much. She is my fighter, my heart and consumes my soul. She is such a great kid. She just beams.

I am feeling pretty great myself these days I started Curves last week. Paul paid for it. I think it will be great. So far I feel so much better when I get up in the morning. The work out is good and it will get me out of the house 3 days a week at least for about 45 minutes ALL year long. Getting out the house for a 30 minute work out will help me so much I think. Not that I do not love staying with Lizzy 24/7 but this is time for me and to socialize with actual people.

Here is a demo of the work out I am doing for me
http://www.curvesinformation.com/the-workout/circuit-demo/
Hope every one has a great week.
Prayers for Dani Pruit and Stella.

Lizzy's video from today . She is singing!! LOL
http://www.youtube.com/watch?v=7ylyj26Qwj4

Research pays off

We got Lizzy's fasting blood test results in on Monday and I have to say I was pretty excited. The Essential Fatty Acid Profile and her Aminos were just Fantastic. Actually all the results were great!! Its due to her tolerex/ donor breast milk diet!! I am just thrilled. Her neutrophils were slightly low but nothing to worry about according to DR. Kelley and DR. Swoboda. They seem think its the drug she is on. She also had gotten a sinus infection a few days after she had the test done. So we are getting the neutrophils rechecked on Friday.
Fighting to get donor breast milk and the Tolerex is so worth it !! It helps these kids!! The breast milk has "Human Fat" and it is so much easier for these kids to digest than other fats.
Lizzy will be 5 in a few weeks!!!!
Hope you are having a great week. I actually am taking an hour a day for 3 days a week and started going to CURVES last night. I don't usually leave Lizzy much but I have gained SO much weight I need to do this for myself. I hate being this heavy.

A video on the Faith's Lodge. Beautiful retreat we went in Wisconsin this summer. Lizzy and her friends in some of this. It was a great time!!

http://wcco.com/local/faiths.lodge.grief.2.819220.html

We are back from our great week-end at The Center for Courageous kids Camp. It was absolutely fantastic time. It was like we were all treated as royalty.
All the staff was so great to all of us. They showed so more interest,caring and compassion for all our kids. Lizzy had a super great time.
There were lodges for the families and they had rooms that slept 8 with your own bathroom that had 4 stalls (1 was handicapped accessible )
and TWO showers(1 handicapped accessible. They said they can house 32 families at a time.
They prepared 3 meals a day for us at NO charge. They had entertainment like Karaoke, Bowling, crafts, wood working, horse back riding, BINGO (with prizes) swimming there. It was like ( I heard a parent say) Make a Wish part 2. Its was amazing .
We had great time talking at visiting with the parents.
We got to see MJ, Chase, Jacob , Conner, Alex, Leah, Annah, Dani(for short time. She was not feeling well) and their families. It was a great time . We got meet a lot of new people too. Angel Kaydence's aunt was there too. Great talking to every-one.
Lizzy met Ben and he stole her heart. He was one of the camp's staff members. He even serenaded her with his guiter. She bonded with MJ as I knew she would. She always has loved MJ.
Quite a rememberable experience. If anyone gets a chance to go I really
suggest going!!
Now I have about 30 emails to get caught up on.

Here is Lizzy , Christen (Lizzy's Mom)and news anchor man Bob Larson WMBD News at the MDA telethon in Peoria,IL a few weeks ago.

Its almost time from our trip to Kentucky to Courageous Kids. We leave in the early a.m in the morning. Lizzy is so excited. She can not wait to see MJ , Brenda and some friends she met last summer. Its funny how they remember things after 3 years old.

Please watch Lizzy's friend Sophia's Video. Its great!!
http://www.youtube.com/watch?v=RPGClmsUPnQ

I want to thank all my wonderful friends on the amount of emails I got from my last "Venting" update. Thank you for caring. Cory , Katie, Andrea and Mary . You all are way too kind to me. I do what I do for Lizzy and all these kids.

Yes, I have given up some things in my life but in turn I have gained a lot. The close friends I have gained ,education and just my life is so important to me now. To know we have made a difference is what keeps me wanting to do more. I have always tried to find ways to fix things in my professional and personal life to make them better but never has it gotten to the point where I feel that this is the what I am supposed to do. Its so satisfying to help Lizzy beat the odds. To see her do things they say she would not be able to do its just emotional to me. Its funny thinking about about how things used to be. Its like it was another person's life not mine. Ohhhhh my weight gain upsets me don't get me wrong (Just about 100 pounds in 5 years due to my back injury) but my mind is so alert now and I just love learning more I can do to help Lizzy . Maybe I will someday be able to start walking again and buy more the things I need to get my weight back down but for now that is impossible.

Thank you all who have made an impact in our lives.

Well back to packing.

Many prayers to my good friend Karen Slavik. She lost two children to this awful disease.

She needs prayers to deal with some more major life changing events in her life recently. Love you Karen and you are in our prayers.

to view more about Lizzy visit her web-site

www.our-sma-angels.com/elizabeth

Gwendolyn Strong is a ten-month-old girl who was diagnosed with SMA1 in April. Her parents have started a petition to take to Congress to support the SMA Treatment Acceleration Act, a bipartisan proposal to increase funding for this disease. They hope to get 50,000 signatures. I hope they get a lot more.Please consider taking a few seconds to sign the petition:http://www.petitiontocuresma.com/ We need to save these babies and these kids!!! PLEASE SIGN !!

Please read about DR. Mary Schroth. Lizzy's doctor from Madison,WI.

http://www.madison.com/tct/news/CTstaging/303127
She helped save Lizzy's life and helps save children all over the world.

Spinal Muscular Atrophy Type 1 (SMA1) is a genetic disorder that occurs in 1 in 4 children born to parents who both carry a recessive gene for it. (1 person in 40 carries such a gene.)Children born with the disorder gradually lose strength in their nervous systems and die, usually by the age of two.There is no known cure or long-term treatment. However, the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) have selected SMA, out of more than 600 neurological disorders, as the disease closest to being understood and a treatment or cure developed.Gwendolyn Strong is a ten-month-old girl who was diagnosed with SMA1 in April. Her parents have started a petition to take to Congress to support the SMA Treatment Acceleration Act, a bipartisan proposal to increase funding for this disease. We hope to get 50,000 signatures. I hope they get a lot more.Please consider taking a few seconds to sign the petition:http://www.petitiontocuresma.com/
We need to save these babies and these kids!!!

Lizzy is raising money for the MDA for the Stride and Ride . With out research we do not know where we would be today. Lizzy was in a clincal study at Stanford that the MDA help fund.
Please help donate to the MDA. Research is so important for the future of these kids . Help save Babies!! Help save kids!! please donate!! https://www.mdaevent.org/ParticipantInfo.aspx?j=39713595-7cdd-486f-b431-7422913418c0

I am getting ready to get Lizzy her treatments and I have been thinking about some things. I need to vent some more. You know there our very bitter people in this SMA World and it upsets me because their children feel how bitter they are. I am not talking about the parents that have lost children due to this terrible disease. To lose a child to such a disease would totally tear a person's heart in half. I am talking about the parents of these kids that are living . It saddens me that a child must feel bad about themselves because every day a parent comments on how mad they are their child has this terrible disease. We hate SMA but we live life to the fullest for Lizzy. We so want to give Lizzy the best quality of living we can. No one is responsible for this disease and so people need to quit blaming their selves , their spouses and get on with life and do the best job you can do caring for these kids. Yes, I hope the government passes this bill to help find way to treat and cure this disease !! So many babies and children have passed away. Every time child passes from this disease another piece of my heart hurts. But ....I am not so absorbed in hating this disease that it takes my passion and my direction away to help Lizzy . I do the best I can for her. She is my focus and all the kids helping the ones that are living, live the best quality of life they can. I have been judged lately because people say I have "accepted "our life. I have not accepted it I just do not dwell on it. I deal with it. I do what I can do for these kids. I get VERY upset when parents DO "Nothing "to help these babies /kids when they now there is interventions out there to help.

I just do what ever I can do for Elizabeth. To keep her smiling and happy. You know its the" now" they are living . My life is not going to sit still and wait for a cure. Help these kids now with interventions so if a cure or treatment does come we will be ready. What I am trying to say. Is I do what I can do and make life as happy as possible for Lizzy safely.She is my life, my heart, my hero and my light. Please think before you speak negative in front of these kids. They are smarter than you think.Thank you all that helped me with Lizzy!! I am so proud of Lizzy and all she can do. Those eyes that smile makes my life worth living. I am NOT afraid to say it either. I will say it again. I AM PROUD OF ELIZABETH AND EVERYTHING SHE CAN DO!!!! God Bless

Lizzy is Amazing

I can honestly say Elizabeth is finally over being sick. Wow!! She amazes me. She wants to go outside and swing in her swing and drive her "Purple power chair" . I am back to her regular treatment schedule.
So it looks like our trip to Kentucky is still on. I really think it was the weather that contributed to this illness with Lizzy. I also had a sinus headache for days!!!!Lizzy had been doing great until the day went to the Executive lock up for the MDA the Wed before the telethon. She plugged on the way home. We had to stop and I work on her for a while to get it out. Every time she does this I think I age 10 more years. At least she tells you what she needs. There are many kids that can not talk with this disease. Since then she had plugged almost every day. It was so hot here the high 80s and 90s .

Paul(aka Papa) was bumped to second shift due to massive lay-off at the job he has been at for 30 years. He is not sleeping well and he is terribly depressed. He was bumped to welding from maintenance mechanic. Poor Papa. Hope this lay off does not last long.
Our trip with Lizzy ought to help.

Well time to take Lizzy out-side. Its Beautiful here today.
Many prayers for our sick friends.

Please go to this site and sign the petition to help pass this bill. Help save these kids!!!
http://www.petitiontocuresma.com/

Fall at a glance

Lizzy is doing so much better. She is getting junk out that I did even know she had in her. She has been doing pretty well last few days. No fever. Eyes are cleared up and her spunk is back. Her attitude is back 4 3/4 years old going on 16. She will be 5 the end of this month. I can not believe it!!
Lizzy decided that "Kid Rock was hot "when she saw him on the TV at the motel we stayed in last Sunday for our area MDA Telethon. Where that one come from I have no clue.
Fall is sneeking up on us *sigh*. Its been a great summer. Lizzy has done so much this summer.
We have a trip to meet a some families in Kentucky this next week so I pray she is totally recovered by this next week. No road trip if she is at all sick.
We are also gearing up for our Stanford trip next month. October is almost here UGH..... that means winter is close behind. brrrrr
It was cooler last night and a peek at fall was upon us. We have to get our bubble ready for winter soon.
We are still trying to figure out what to do about school. She will not be in kindergarten till next school year so she will be with the same kids as last year. I am going to try to homeschool her but I need to get materials for her. She is a sponge when it comes to learning. I have taught her a lot already with out even trying hard. She did enjoy school the past to 2 years but the parents of some of these kids do not get why they should keep their sick kids home even after the letter we sent home. explaining why you should keep your child home when they are sick. That illness she got last year scared me so badly she caught at school. She was so sick.

Well time for my girl's treatment and then to bed.

Prayers for : MJ, Sophia S, Courtney,Madison B, Ethan B family, Emily, Ally,Hayron , all the sick kids and families that have lost loved ones.
I found this great web-site for mom's with kids with special needs. You need to check it out. http://www.mothersfromhell2.org/index.html its got some great resources on it for ALL states not just IL.
Thank you who all watch this blog. It means a lot to me.

Sad end to summer

The MDA telethon in Peoria ,IL was Sunday and Monday. Lizzy did great but it was a different atmosphere this year with all new people from the MDA. They did raised a lot of money in our area.

We just love the WMBD news people. Lizzy loves Bob. He had his 2 week old grandson on the air with him.

Our" Smiling Fighter Princess" is now VERY SICK. Lizzy has a sinus infection. A Bad one. We took Lizzy to see DR. Hough about 3pm yesterday. I dont know how she is going to tolerate more bipap with a sinus infection. So far no extra bipap time will she tolerate except for her normal over night times.
We are hanging out watching movies and reading her Fancy Nancy books over and over . She is miserable. She started Zithermax yesterday. She has a slight fever and both eye is swollen and VERY RED. Blood in her nose and feels like crude. Laying low. She said she had a headache Sunday she said on the way home. Her O2 is pretty good not dipping past 97 but her heart rate is a little higher than normal

I have increased treatments to every 3 hours and have her on her miracle formula breast milk , tolerex and water.

We have a trip next week to Kentucky and I pray she will be better so we ca go. She is looking forward to seeing MJ and see a few of her friends.
Keep Lizzy in your prayers!!