What else can happen to us? (Spinal Muscular Atrophy)

We just got a letter from the Donor Breast Milk Bank and they are stopping Elizabeth donor breast milk because Lizzy insurance has not been paying . We had no clue they were not paying. Lizzy's insurance had prior approved Lizzy milk so all this time we thought they were paying. What are we going to do? Lizzy has to have that donor breast milk to thrive and survive. I have tried everything I can on Lizzy nothing works better with her tolerex mixture than donor breast milk. She has so many issues with diet because if her disease. Fatty acid metoblism disorder. I am just a mess right now. Tears are flowing down my face. I dont know what to do. This is one thing I can not fix. I have a wonderful lady that is sending a box of her breast milk but I have no clue on how much. Then, when that is gone then what? She is so great to help us but what after its all gone. Lizzy gets 16 ounces of breast milk a day and 20 ounces of breast milk a day when she is sick.
I am just sick.

Paul goes back to work today after his teeth being all pulled. I got the court documents online. The union and his job is ending March 4. No more extentions. We have come to the lasts days.

Lizzy on the other hand is doing great. She is bouncing back. Still not all cleared up yet but ornery as heck and ready to rock and roll. She has been talking about going to Kentucky to see all her friends constantly at CCK. Wonderful place for special need kids.

You ever feel like you have just ran out of all options? Ever feel totally helpless? Every feel like you dont know how you can continue to keep fighting? You ever just get so tired and need a rest and are not able to do that? You know you have to but dont know if you can? Its not like me to give up but..... Lizzy is such a wonderful child and what am I to do this time?

We do believe in miracles and right now we need a few God if you are listening.
www.our-sma-angels.com/elizabeth

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.

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 !!

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!!

Its been a great Summer!!

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.