" I love myself!" - Living with Spinal Muscular Atrophy

We had a quiet Easter . Lizzy got a Easter Basket from her Grandpa Aaron, the Easter Bunny(her mom and Dad) , a few little things from Papa and me.  I made a  ham, loaded baked potato salad and baked beans. I usually go over board cooking but... this year I was not feeling the best. My hands have been getting worse in the mornings , my back is bothering me and I have felt fatigued since Lizzy was sick. Not sure why but I think because my back is bothering me I have another "Bakers cyst " behind my knee. Not looking for sympathy here I am just trying to figure out what is going on with me. ( getting to be a whiner here)  It sucks to get old. We watched the movie "On the blind side" great movie by the way on Easter. So, it was a great quiet day.

Lizzy was on her computer the other day and out of the blue she rolled herself to look at me and says "  I love myself!" She then says "Is that okay Nina?"  Where did that came from?  " Yes, Lizzy that is okay. You can love yourself and you are supposed to love yourself"  She has said this a few times the last few days. If anyone does anything to change that I will commit bodily harm to them. We must be doing something right for her to say something like that. I encourage her to have goals and to reach them. I always say "Lizzy you can do anything you want to do some way some how" in her ear after she has fallen alseep EVERY night.

We had a busy day today. We went to the Ortho and saw Tony in Peoria to have him fix Elizabeth's brace(TLSO) a few adjustments and she is good to go now.  Lizzy drove around his parking lot today in awesome weather to make sure it worked for her. Tony likes Lizzy's AFOs that I used leopard material and Mod Podge to make them work for her. Tony forgot and made them white plastic and Lizzy was not happy. After consulting a very awesome crafty mom , she told me to try mod podge and fabric. It took a few hours to do and worked. Lizzy is happy now!!  I will take pics in the next few days.

We saw Linda tonight for MF release and she is still quite impressed on how much more Lizzy is moving. That new herb/spice we are using from Pure India in helping so much with inflammation.  She is moving so much more. She has been on it a very short time it is working so quickly!! I am taking it now since it works for her.
We are excited to get Lizzy swim therapy starting this Thursday!!
Happy Spring!!!

Many prayers to all the sick kids!!
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth

Shocker Heat Wave - Living with Spinal Muscular Atrophy

The weather change to 80 degrees is a total shocker. Is this a good thing ? My allergies have gone wild!!

We went to Dana's( my daughter) tonight  for a cook out. I don't remember having a cook out in April before. Its very hot and dry.

Lizzy has been doing so much better over her last illness. She seems to be doing things lately that has surprised us. She is getting stronger even her MFR therapist Linda agreed. I will make a video of Lizzy soon showing what she has been doing. Amazing.

Our sweet miracle friend Hannah Price 13 years old SMA Type 1 is in the hospital and doing some what better but still pretty sick. Please add her to your prayers.

Paul just did final and is was the top one in his class. He starts with a new instructor on Monday. He will finish in October.  He has to go get a job soon as possible as he found out that he only get 7 more weeks unemployment. He is hoping to get his EPA here soon so he can start working in the HVAC while in school other wise we do not know what we will do.

Elizabeth starts swim therapy at Easter Seals on Thursday!  Finally!! 

Have a great Easter weekend . Many prayers for Hannah and all the sick kids. 

Prayers for Drew and hoping he is doing better after his surgery.

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

A Story of Love and Caring - Living with Spinal Muscular Atrophy

I was sent this and oh my..... I cried all the way through it. Its amazing what LOVE and CARING can do.
A community hit hard from the times did this for a special family. So. heart warming!!  I wanted to share with others. Watch this story on Dateline this Sunday !!

Hi Nina,

Given Lizzy’s active followers and your voice in SMA therapies, I thought you and your audience would be interested in the following inspiring segment that will be airing on ‘Dateline’ this Sunday, March 28, at 7pm EST. The story is about a small Wisconsin town that rallied behind Karen Longoria, a Wisconsin single mother of triplets who has been fighting multiple battles: after two of her children were diagnosed with spinal muscular atrophy, she was then diagnosed with breast cancer.

The small town of Grafton, WS truly joined forces to help build a better home for the struggling mother and her children. Local farmers donated their proceeds to the cause, over $200,000 were raised, over 1,000 volunteers showed up, the principal of the local elementary school even kissed a cow after challenging his school to raise a certain amount for the Longoria family.

Here’s a preview clip from this morning’s TODAY  (embed code at the bottom of this email) and a brief teaser  to give you a better idea about  Sunday’s program.

      TODAY Clip: http://www.msnbc.msn.com/id/21134540/vp/36050181#36050181

     Teaser Clip: http://www.msnbc.msn.com/id/21134540/vp/36018382#36018382

Look forward to hearing what you think,

Cheers,

Rob!

360i on behalf of NBC NEWS

" We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth 

Unexpected Illness and Healthcare Reform - Living with Spinal Muscular Atrophy

    

Lizzy came down with something yesterday morning. Oh my secretions like a fountain . Her nose filling up like every 5-10 minutes . She would not come off her bipap( until late last night for about an hour) . I could not even pee without hearing" NINA I NEED YOU!" Walk 2 foot away and she would set her pulse off and start yelling. It was a dandy day yesterday and last night. I am not complaining just explaining what it is like when she is sick. I know she needs me to help her but somedays/nights you feel like "okay am I the only one that lives here?" Today Paul had got home from school  and was 3 feet from her on the home computer and she yells "Nina I NEED SUCTION!" while I was in the kitchen trying to get something to eat. Okay, He knows how to suction her but would he help? Nope....... he just sat there. Then, he as usual went  upstairs to nap. "NAP .... Okay like he is the  only one that needs a darn nap!!" Lets see he went to bed around 8pm last and went to school this morning. I on the other hand had maybe 2 hours sleep last night.   UGH...... Okay come on people you can help too. When Lizzy was younger yes I did not ask for help but she is older now and when she  tells you she needs suction then by gosh Jump up, germx your hands and GO FOR IT!!! I know I am very tired today and maybe slightly crabby (okay a whole lot crabby) but you know sometimes you get really upset when you need help once in awhile and NO ONE will help. I will be busy with Lizzy and no one will answer the phone but me most of the time. Christen seems to want to help everyone else but me these days. Yes,she does have a "good heart " but come on "WHERE ARE YOUR PRIORITIES WOMAN? " I asked her that  question this morning when she ran out the door to Dawn's to watch Dawn's kids. Hey, don't get me wrong I love all my kids and grandkids dearly but when your child is sick as bad as Lizzy has been these past few days you need to stay home with them and HELP!! I never used to say a thing but these days I have been watching and paying more attention. Today Christen tried to " suck" up buying me McDonald's burritos for break fast...... I knew she was leaving. She could not even carry the cough asst down stairs. I feel like I am talkng to the wall these days because NO ONE IS LISTENING. They have learned to block me and my feelings out!!

Did you catch Dancing with the Stars last night? Wow, Buzz Aldrin was pretty good for a man of his age.
Then, OH MY Pamela Anderson..... let just say "Oh My........"

Okay, HEALTH CARE REFORM.  Okay ,Paul  and I do not have insurance we tried to get Cobra insurance after his layoff and it WAS over half of a total months unemployment check. Do we blow off the bills, house payment,groceries etc to get insurance? He lost his job a year ago and with that we lost our insurance.Is it our fault my husband lost her job of over 30 years? NO it is not.

I have been scared out of my mind because I can not afford to go to the doctor and my hands have severe pain and then going numb sometimes and more so lately. I know I need surgery for my hands(wrists) but what do you do?  I can not even afford to buy the arthritis med the doc gave me script for . Its like over 100 bucks a month. So, I deal with the pain. How long can I do this? I dont know. Paul has type 1 diabetes he has been taking less in his med to save money. That is so scary to me he would do that. I told him no matter how poor we are he needs his meds.
 Okay...... Now,  Lizzy and medicaid. I hope it does not effect her at all. According to Sara Palin they are going to have a what they call a DEATH Panel that decides who lives and dies?  What ever..... She is NUTS  and such a" trouble maker." Her and that Elisabeth on the "VIEW" are two women that need to settle down.. How dare they say they things they do and get away with it??? Come on after scaring the crap out of us all worrying about kids like Lizzy its totally false. We are not sure how it will effect Lizzy yet but I have been reassured it will not take anything away for her. We will make sure Lizzy is taken care of no matter what it takes. Elizabeth and I watch the view every day and "our Elizabeth loves Whoopie(Lizzy's favorite) and Joy but says" Elisabeth is MEAN to Whoopie and all the ladies on the "View"." Out of the mouth of a 6 year old. Elisabeth need to sit back and listen sometimes instead of pointing fingers and  stop saying such bias things about the president in my unbiased opinion.
Any way. I had to get that off my chest. I do not usually talk about my political views to my friends because you can lose friends in how you feel. I will not go on about this with anyone. Its not debatable it is now LAW.

Well , Lizzy has been on bipap today for a few hours. She keeps moving her toe and setting her pulse ox off then laughing so she is feeling better but still is pretty sick.

Oh and just a FYI if you have a DME like Apria and they are blowing you off about things you need THEN GO HIGHER up the ladder. Lizzy's Letter of Medical Need was sent in months ago for  a new bipap. Well,we found out today it has not even been submitted yet. Keep calling EVERY WEEK and do not let them rest until they do what they are supposed to do!!

Many prayer for Lizzys and all the sick kids.

" We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth

Two Steps Forward and One Step Back - Living with Spinal Muscular Atrophy

The wonderful spring weather did not last long. It was so cold today and a huge let down. Luckily, no snow as of yet but up north they did get some.

Lizzy just started going back out side in her power chair and just when we thought we could start going on walks again it and it  gets cold.  YUCK!! Any way , her and I did other things and she helped me cook chili.   She has been doing really well but.... we need to get her TLSO worked on because it just does not fit her quite right. So, back to Peoria in the VERY near future to get it fixed. I am sure Lizzy will tell Tony he messed up giving her white AFOS and not her normal leopard print. She is SO MAD about that.

Paul was having fits over the basket ball game today and Lizzy point blank told him If he did not calm down he was going to have a heart attack!!' I love it!! She is quite aware of EVERYTHING that goes on . Her favorite thing to say is 'OH my gosh!! You won't believe this"'

My diet is failing........ugh I am so good then...... I back slide.  Eating right is so expensive. I need a trainer and diet food delivered to my door every day to keep me from back sliding. Oh gee, we can afford that one alright. In my wildest dreams any way. Hey ,Donald Trump or Oprah  are you listening? (Yeah like that will ever happen) We need a full size handicapped accessible van &house before I would ever think about myself. My needs are nothing compared to our needs for Lizzy. She is happy and doing well so that is the main thing but to make life just a bit easier would be a dream come true. She is such a great kid I would give her the world if I could.

Paul is doing great in school( top of his class)but STRESS from possibly no income from unemployment has attacked his constant awake hours. He was on Spring break but....he did not get a break from worrying. He has not gotten a check for two weeks. He is told by others that their unemployment has run out. Then, he was told by the local unemployment office that they extended it .......... what to do? So, far NOTHING. Now the reality of losing the house if he does not get an extension has us both very upset. So, when I am this stressed I do not sleep and he is hard TO BE AROUND. I research when I don't sleep and he sleeps more. Makes not sense does it?  Two steps forward one step back.

I believe it all will work out some way some how. It always does.

"We believe in miracles because we live with one "
www.our-sma-angels.com/elizabeth

Loving the Weather and Research Update - Living with Spinal Muscular Atrophy

                                     Lizzy is drainage Position while at the motel in Madison

Sorry, its been over a week since updated. We are finally enjoying this warmer weather. Lizzy and I walked home from my hair appt on Tuesday evening. It was great breathing in that brisk air. She loved it. Now, the time change kicked my hiney and I am not sure why but I was dragging until today. Its been kind of strange around here this week with my phone lines being messed up and a few other issues.

Elizabeth is now using her "Easy Cat " mouse while in her stander. She was upset because she was refusing getting in the stander because she could not do her lap top all on her own. So, I rigged her stander up with a 2x4 block and packing tape  with her Easy Cat Mouse and it works!!

We are hoping the weather stays warmer!! I hope Spring is here to stay. Lizzy has been doing well and NEVER stops surprising me. She is such a great kid. I feel so honored to have her in my life. As, I have said before she is my heart.

Now,  for the latest and greatest SMA RESEARCH!!

A good friend of ours Vince Gaynor( Sophia's Cure)  posted this yesterday and I wanted to share it. He is such a good Daddy. He made it easier for me doing this so I am sending it to you on SMA RESEARCH!!
I feel this is the year the research is so promising. I see great things happening!!
Thanks Vince for doing this!!! Saved me a lot of time.

A few new articles on promising research

Posted by Vincent Gaynor at 7:35pm yesterday

Hi everyone. I wanted to post some information and recent articles that have come out. I wanted everyone to know I am just an SMA parent sharing information on research that I have become aware of. The information I post about is from direct conversations I have with the researchers involved in the studies as well as experts from many different organizations that have been involved with sma research for many years. I can only refer to the comments relayed to me and pass along any information I know. I am not a researcher myself, but for what it's worth, I am also not a nurse, pt, ot, sp, nutrionist, pulmonologist either yet I am teaching local doctors about SMA Type 1 and my daughter Sophia is thriving! I want to make it absolutely clear that NONE of these programs will benefit the majority of our children in the immediate future, however I believe these programs hold the most promise moving forward and give our community as a whole the best chance of one day ending this disease moving forward. On my next post I will be touching on restricted funding to maximize the benefit of your hard earned research dollars, but for this bulletin I want to highlight some of the recent articles published and discuss some of their benefits and questions that remain about each program.

Lets start with the Quinazoline Program here is an article posted on this promising therapy:
http://www.ricercasma.it/index.php?op...

The Quinazoline program in theory will upregulate the SMN 2. It is a very promising therapy designed specifically for sma. The hope is that the triggering mechanism will increase the smn 2 expression by a certain percentage. Thus improvements from this therapy will hopefully be seen in patients with a larger amount of "backup" SMN 2 copies. The question with this program is what benefits, if any, will children with fewer copies see.

The next program is the Motor Neuron Replacement Therapy. Based on timeline we have felt this was the most promising therapy for the most immediate impact. Here is a recent article on Stem Cells:
http://www.cbsnews.com/stories/2010/0...

The MNRP is an exciting and very promising program. The studies done in this experiment have showed a dramatic improvement in mice with spinal cord injuries. The administration of the motor neurons will be through a surgery similar to spinal fusion. The hope is that this treatment will replace the motor neurons that are defective in patients. The questions with this therapy are do motor neurons die or do they just remain dormant once there is an absence of SMN. This is a very important question since research suggests that stem cells seem to act as a crutch to injured stem cells rather than replacing ones that have died. Another question is can the results seen in a mouse model be replicated in a much larger model such as a primate. The length of the pathways that must be regenerated are much shorter in a mouse model.

Our third program is the Gene Therapy Program being run at OSU/ Nationwide here is a recent article:
http://researchnews.osu.edu/archive/s...

This is a wonderful and exciting program as well. This program has shown the ability to actually cure the most severe animal model of SMA. The exciting news is that these results are showing the same translation in a much larger animal model. This program has currently moved into primates and is seeing some amazing results. This program is a gene replacement of SMN 1. Based on virus, and delivery approach this program seems to be easiest to gain FDA approval towards human clinical trials. The virus used to enter the motor neurons is similar to a common cold with the harmful side effects being removed. Because this virus can cross the blood brain barrier it can be injected like an immunization shot. The big question that remains with this program is what is the window of treatment that patients can continue to see results from this therapy. Will it be only the earliest patients treated in the very first days or will we be able to see results in older patients as well.

Here is another promising Gene Therapy Program being funded by Genzyme:
http://www.jci.org/articles/view/4161...

This program has shown some amazing results similar to the work being done at OSU. The same questions remain for this program as well. The big difference is the virus used and the delivery approach. This treatment is using a virus that must be administered through the scull. Will the FDA be more inclined to approve a therapy with a more drastic delivery approach.

Finally here is an exciting article on research being done at University of Pennsylvania using Amino Acids:
http://www.hhmi.org/news/dreyfuss2010...

This program is using amino acids to prevent degredation of SMN 2. The good news is that this research is being fully funded by Merck. Because Merck is funding this research there is not a lot of information being released publicly on this program. This program is in its infancy and is years away from applying for human clinical trials. They plan to test on an sma mice model in the future.

I hope this has been of some assistance to help realize the research that is currently being done so you can make a more informed choice on where you would like your research dollars to go.


Many prayers to our friend Drew!! Recover Quickly!!

"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth 

A peek of Spring and so many changes in a year- Living with Spinal Muscular Atrophy

The sun has been out the last three days and "Spring Fever" has attacked my inner being. The snow is almost gone and it actually has been in the 40s. That is a heat wave compared to the last few previous months. Spring  " sigh of relief" we have made it through another winter with out too many illnesses.

Christen is 27 today. Hard to believe that my last child is sneaking up on 30. Wow, now I am feeling my age. I must say though that I had a compliment last Saturday when we were getting our taxes done. I loved it. The woman loved my hair and also said I looked like I was in my 30s. LOL She must of needed to get her glasses fixed but it was nice to a compliment. I needed it even though I know I don't look that young. Nice thought though.  For second there I felt like I had went back through time. I used to be told that a lot before my accident and my weight gain. I have felt for a long time I have aged very quick the last 7 years.  My husband sure has aged so much just this past year. Amazing what stress can do to you isn't it?

A year ago today my husband lost his job of  over 30 years for good.  So, many changes in just one year. Now, Paul is in Trade school and the top of his class. We are still alive and well. Our finances are WORSE  than ever but we are surviving. Paul has school until October and hopefully will be placed in a job right from school ,stay on unemployment until he gets done with school or I do not know what we are going to do.

We just got back from a awesome doctor visit with DR.Schroth in Madison. Elizabeth had photos taken with her machines/equipment for the  new book they are doing.  DR.Schroth was very pleased with Elizabeth her weight gain and just every thing. We are still waiting on Elizabeth's new bipap the Trilogy from APRIA. They have not EVEN submitted it yet. grrr  Not much in changes for Lizzy.  Just upped her meds. Diet was great with no changes and I had them up Lizzy's IPV to 30 instead of 20. That made a huge impact on her treatment on how much  more productive the IPV treatments have been. Lizzy also got blood tests done for her aminos, fatty Acids etc.  Lizzy is ear infection is ALL cleared up.  It was a great visit to Madison. We had a quick lunch with Katie and Avery Poole and Shannon , Justin and Addison while we were there.  Then, we went to lunch with Katie the day we left. We did not get to spend much time with our friends but it was good to see them. We stayed at the Hilton  HOME WOOD Suites . My gosh... talk about awesome. We have never stayed at any where so nice. We didn't want to go home!!  They had dinner( we ate one night dinner) and their breakfasts were so good. My diet flew out the door for breakfast!! I have lost some weight but only went down a bra size LOL so that is all I have noticed but I am not giving up!!
Our little friend Drew had surgery this week and as far as know he is doing well. Add him to your prayers so he heals quickly.
We have a HUGE Summer planned and can not wait to be able to be start it.
Many prayers to all the sick kids and kids recovering from surgeries.
" We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth