"Elizabeth, our scientifically proven theory and more Brick walls"- Living with Spinal Muscular Atrophy

My oh my what a CRAZY week in the SMA World. Big lessons I have learned. When you vote for a charity online to WIN big bucks make sure YOU KNOW WHERE THE MONEY IS GOING!! Oh well...... Im done being upset over this. I just thought that Gene therapy and many other things needed some funding but who am I??   Its all Politics.... I have to remember that.  I just care so much for these kids and funding a trial that has been done a few times before and failed..... Like, I said who am I? 

Then,  the Amino Acid diet was "dogged" yet again at another SMA conference. I ought to be used this one by now.  Why do the researchers dog the diet? I have been in this world 7 years next month and I had to battle this since Lizzy was a year old. Finally, I proved it worked for Elizabeth and many other kids. People LOOK AT THE BLOOD WORK!! Look at the kids for goodness sake!! Thank you Nate Lee for your comments on the diet!!!! GOOD Job for telling them the diet works!!  they  SAY NOT scientifically proven ? What ever!!! LOOK AT LIZZY !!!  Just take a group of kids not on AA and a group that are. Lets see which ones look better and do better. Hmmmmmm that is a NO BRAINER!!!  DUH... I am talking Type 1s here. Okay, seeing what the diet has done for so many. How is that not "proof" enough. Just the difference from a dairy based diet to an amino based diet is a total miracle. They have more strength, secretions are so much less, and they are healthier than kids on a diary based diet if it is mixed correctly. They do not like it because we have found that the diets are individualized for each child. The base is the same but the supplements maybe different. Lizzy is on donor breast milk with the amino acid formula with Fruits and vegetables. Give me a break. I thought this issue was getting better. I hope the data base works.

Another glitch we have encountered.  Lizzy was approved for the Trilogy( Bipap/VENT) through her state medicaid  but.... was denied through Apria. Scratching my head here, Okay, a device approved from the state because Elizabeth needs it and then the DME refuses to order it for her because it costs too Much.
Okay, let me SCREAM!!!!!!!!!!!!Brick walls, red tape and lots of "political hogwash" this week.

Lizzy is doing fine though. What a trooper.She is been one ornery kid this week!! Got to love it!!

IEP tomorrow....... whew big stuff.

Jessica is leaving moving to Kentucky with my sister Mindy. She got laid off and is in a deep dark place right now. Not sure what I can do to convince her to stay.We will miss her. My siblings all moved away now my child. It hurts but we will survive. Its kind of like the first day school when you walk them to the school in the front door to their kindergarten class. You know its their new beginning and the end of them being totally dependent on you . Good Luck Jess we will miss you. I hope you find what you are looking for.

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

"Rested but Never Caught Up " - Living with Spinal Muscular Atrophy

Finally,  all is better here . Man, the virus that hit us was brutal. The incubation period is the quickest I ever did seen. With in 24 hours in contact you are the" Porcelain queen/king" at both ends with intense cramping. Christen and Brandon both had  it also. All is calm and disinfected. I am finally rested. I am a week behind EVERYTHING!!. I am always behind it seems chasing my tail..

 Lizzy is almost back on regular feeding rate and her regular diet and doing well. The funny thing is she does not look like she has lost any weight. Besides the "Bipap Bite" on her nose she looks good.  She was only getting 8 ounces breast milk, organic bananas, pedilite, water, tolerex and I added in her supplements on Thursday . Now the only thing she is not getting is green beans. She had NEVER had the stomach flu EVER. till now. I know exactly what to do now. I was very concerned when Lizzy had gotten ill . I did good. Lizzy is a "Champ" my "HERO" She tells her Dad the other night " Dad I will be okay... I have a g-tube I will just puke up it  there and I will be okay"  Where did that come from.  Is she smart or one or what?. She pays attention well.

Breast milk Donor Moms- if you read this PLEASE if you have extra there is a baby in Florida totally out and NEEDS breast milk immediately she has a post on milk share and her name is Melissa. Email me and I will give you her info.

I guess Lizzy is set up for a sorta sleep study first week in June in Madison. DR.Schroth is not on call that week but will be around. I just want to do it here now. If its just observing her while on bipap what is the big deal? I am possibly going to see if can get one of the bigger hospital.in the area as much as we do not want to do that but.... this has to be done to get the Trilogy. Does not hurt to try.

I just heard something very alarming..... There is a newly diagnosed that is consulting  with one  of the SMA specialists (Not a Pulmo) and the parents were told "NOT  to USE THE AA because the child is too WEAK" WHAT THE HECK? Okay, I am totally confused here.......how could a child be too weak to use a the AA diet. A diet that helps these kids get stronger, help their secretions and help their respiratory. Make no sense to me what so ever. I guess animal proteins are easier for them to digest....... NOT!! I MEAN THEIR LIVER/KIDNEYS CAN HANDLE dairy BETTER than AA?????    NOT!! I have been in this world almost 7 years and NEVER heard such a thing. ( Shaking my head).

I would like to add some thoughts here. If you have a child with this disease (SMA Type1) you have to quit thinking they are going to die every day if you are doing everything you can to help them. For your own sanity and theirs. I mean were they born with an expiration date? NO THEY were not.   The MDA recently a few years ago changed the life expectancy to 4 . So, that has changed. You need to realize what a precious gift you have and ENJOY them. They are such smart kids and they pick  up on your fears of them dying.You need to give them the best possible care you can, Treat them like they are normal with extra care.Waiting for them to die is no way to live. For you or them. Who do you feel sorry for them or yourself? GET OVER IT and GO On PEOPLE!!!  Lizzy will be 7 years old in a few months and we were told she would not live past a year old in the beginning. ( I JUST HAD TO SAY THAT...sorry if I offended any one.), These are my thoughts on the issue. We are all going to die someday.
 Just enjoy your kids.
 Okay, I had more to say on the subject but I will end for now!!

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

"Loving Lizzy, Flubber Flu and People that you just want to thump in the head"' Living with Spinal Muscular Atrophy

Sitting here thinking about my girl just makes me beam with pride and love. Never know what  she is going to say or do. She was dancing her her power chair on the patio and singing last week while her I were outside together. We were having a conversation about something I was awed at her comprehension level. Its was like adult conversation. She really "gets it" . She is so aware of every thing.
Every thing we have ever done for her seems like nothing to be able to have her in our lives. All the fighting with doctors, research , trials and errors.  Its all worth ever ounce of effort. She is our miracle and we beam with pride. She is my heart .

 Have you encountered the Flubber Flu yet? Seen the movie Flubber? Which this is how I describe  a virus we encountered, I may whine sometimes about my hands going numb or my weight but in reality in my 51 years of life I am no whimp by any means.  I have woke up feeling like crap, took a shower and told myself I did not have time to be sick for many years. I have worked three jobs at times, ran a SPORTING GOODS DEPT that sold guns and dealt with men EVERY DAY, worked with LIVE turkeys,went to college while bartending at night while raising 4 very ornery girls , went through natural labor 4 times(" Like taking your lip and pulling it clear across your head" my grandmother used to say) etc... the list of my accomplishments goes on but...  I  have never had time to really be sick.  I mean to be in bed for hours sick with blanket pulled over my head I had to be close to death.. Well, I thought I had food poisoning from eating while traveling and a migraine from my allergies. Little, did I know it was the deadly "Flubber Stomach Flu".. I thought I had something ALIVE in my stomach and scary part was trying to get it out of me. I felt like something was punching my insides. The pain was intense and when it left my body it was quite a relief. The smell of the gas could probably be bottled and used for a toxic gas for chemical warfare. ewwwwwwwww!! I had food poisoning one time for eating some chop suey that sat out all night and I did not know it. Very similar symptoms. The final round of intense cramping lead to a huge relief besides a rest area worker probably quiting their job. I could not eat, drink or move for about 14 hours. A virus kicked my butt where I was not functional 14 hours. Down for the count. Had I known I had a virus I would of not even been with 5 feet from Elizabeth let alone another human being. I thought it was my allergies and something I ate. I did stay away from every one with my first symptoms. I just took off went to my room and did not move I mean not even  a sip of water because I would PUKE!! Blanket over my head and  not touching, breathing on any one. I was fine the next day. So, as I said I thought it was eating fast food and my head ache from allergies from the high pollen.

Well, sadly Elizabeth started with symptoms on Monday evening blowing food up her 60ccs vented tube, turning very pale and begging for bipap. Oh My God what did I do? Christen was a mess she was so upset.  Did I  give her another virus? No, I had allergies and a migraine.... NOT....  I was not even around her at all after my first symptoms. Guilt sat in....  It was me that gave her a virus last year in March. I was going to Curves at the time and a mother came in to work out to get away from her sick kids and I caught it about 5 days later even after I stripped when I came on threw my clothes in the washer and immediately took a hot shower. Its an airborne virus. I quit Curves after that incident. I was finally starting to show I was losing weight. I just can not chance catching anything and bring it home to Lizzy. I stay home unless Lizzy has an appt because I am so afraid of catching a virus and bringing it home.  How could  I of gotten anything? I am a freak when it comes to going in public. Always washing my hands, I even disinfect the toilet at home before I sit on it. Who infected me? I am so careful how could this happen?
Yesterday, was terrible. Lizzy could not come off bipap. Her heart rate was ranging from 140-170 her O2  was good when she was stable  but it was a scary day. Her heart rate would drop to 60s or 70s FROM 170 in a matter of seconds and blow her food out of her tube and then have diarrhea. It was a very intense day yesterday. I was afraid she would dehydrate and she needed something for the nausea. So, when we had someone from UW call to tell us there was nothing he could do to get Lizzy scheduled with the RTs at UW to admit Lizzy into the hospital in May to get her Trilogy ( machine Lizzy needs) he was calling to get back to us from a phone call we made on Monday to UW to the person that called us to set up dates on Friday as we were leaving town. I called them back to tell them Lizzy needed something for nausea immediately that was at 11:45 AM yesterday morning. He treated me like a stupid moron and made me recant all the happenings since Christen had talked to DR. Schroth the phone ( because we have never dealt with stomach flu with Lizzy) the night before. No one called back by 4:30 pm and Elizabeth was doing this more frequently now. My concern was growing more and more. I had Christen call over to DR.Hough to see if they could give her something for nausea since apparently Elizabeth's illness was not important enough for UW to call us back. DR Hough's did  call her in somthing but the side effects on the drug they gave us worried me so Christen text DR.Schroth and asked her if this drug is okay for Lizzy . Still no response about the illness and its 3:27 p,m the next day . UW did call today and tell me since we did not get back to them with the date we could admit Lizzy for the machine we lost out on the dates.( which HUH? I CALLED ON MONDAY AND WE GOT A CALL ON TUESDAY SAYING THEY COULD NOT SCHEDULE THE DATES from the guy that made me feel like a Moran. ) ARE you as confused as me yet?????? WTH..... I proceeded to tell the lady that Lizzy is doing better today and why had not they called back when Lizzy was so sick yesterday. She said" She knew nothing about it and that was not what she was calling about only to tell me we blew it not calling them on MONDAY ( which I did do) and she would be in contact with us with dates.  If I lived in that same city and not 4 hours away I believe I would of went into that clinic and just ohhhhhhh my gosh let those nurses have a piece of my mind. What the heck. We love Madison but my gosh you do not treat people like that. No communication there I guess...... sad.......
Thank God Lizzy  was a lot better today.  Tonight though she asked for bipap and said her tummy hurt.  Christen now has the "Flubber Flu" and can not move with out puking or having the diarrhea. Its bad... stuff.

Lizzy had a great time at CCK last weekend. The time of her life. Thank goodness Jessica was able to help with Lizzy because there was no way I could even be around anyone after lunch on Saturday. I guess I was not missed either. Alrighty then.
Lizzy's camp counselor was Avery. She was really great with Lizzy entertaining her and all. Its such a great place.  We would love to have more time there. Lizzy got to see her BFF Emma . She talks about Emma all the time. Lizzy help design some hair bows for Emma so she could give them to her at camp.

 Nick . Lizzy and her BFF Emma above. 

Its sad we live so far from Ohio. We always feel so welcomed around the Ohio bunch.

Please add Lizzy and Christen to your prayers.

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

Its Spring? - Living with Spinal Muscular Atrophy

After a wonderful week last week of great weather its raining now and cold. Brrrrr So, much for thinking Spring was here. Any way ,we had a busy week this week. Lizzy got her TLSO fitted CORRECTLY ( I hope) on Tuesday in Peoria . Come back home and then Lizzy had MF Release. We got home late but it was a great day. Linda noticed how much more Lizzy is doing also. Its exciting Lizzy is able to do more!! Makes my heart "Sing!!"
Got the approval from medicaid for the Trilogy( bipap/vent) this week  but we have to stay in the hospital as I said before. The approval had to be for a vent not a bipap. Medicaid  has been really good to Lizzy the past few years. Some cuts like the tubing  but as far as machines or bracing they have been great. So, Lizzy will have to spend 24-48 hours in Madison, WI here soon. I am not happy about this but what are you to do? You got to do what you have to do.

I was also on the phone with our IL state Senators office asst . She was NOT very helpful as she has been in the past with Elizabeth's needs. She said to save money we need to get rid of the internet . That is my only connection I have with the outside world sometimes and my brother pays for it. I pay the taxes for it on my phone bill. She said we ought to go to the library for access to the Internet. Is she nuts. Like, I am going to take Lizzy to a GERMY library every day!!!!  Lizzy is on the internet EVERY day doing school work or on her sites she goes too. So.......that suggestion can "blow". The state has NOTHING in regards to help with affordable medical or the unemployment situation.  I had emailed her when we found our Paul was cut off unemployment. She just now got back to me. My husband has applied for OVER 200 jobs since last March. He is in school full time. He is hoping to get some jobs mowing or odd jobs but he has only 5 weeks left unemployment as of now I guess.  He will not be out of school until October. I am hoping something pops up soon. Christen has applied for jobs but because of Elizabeth's appts she can not get hired any where. Lizzy has two days a week every week she has appts and every other week three appts. a week .Elizabeth NEEDS these appts and it is not a good idea to travel with her ALONE. 


The  hospital here  did call today ( out of the blue) and told us the sisters can help us with medical if we are eligible.  Is that good news or what? .  That is a relief. Just need last years income tax return to see if we qualify. No problem. I did not even inquire about it. I guess the doctors office requested help with Paul's insulin a year a ago. The lady on the phone said she just found the paper work on it and apologized. So, hopefully him and I both can get medical help at a lower rate.  Yoo hoo. Things seem to be looking up for Paul and I just maybe. I told you it would all work out some how some way. I have Faith and Hope . Those two things get me through and Lizzy of coarse. 


Lizzy had Easter Seals appt today . She had swim therapy!!  ( The crowd roars)  FINALLY!!!  Its been over a year. It went really well. She also got these really cool pink and purple hand splints that were ordered when she got the eval done. We are pleased. Elizabeth actually wore them 3 hours with out any complaints!! 


We are planning to go to Center for Courageous Kids here next week on  Friday. We did not think we could afford it but we are packing a lunch on the way there and Christen was able to get the money to go. Lizzy needs to go . She has not been out much and been stuck in for months so we are going. Looking forward to going and seeing many of our friends!!  


It was good to get out this week a bit and get some things taken care of Lizzy needs. If you do not have a proper fitting TLSO then getting in the power chair is very hard for Elizabeth. 


Our Prayer list seems to keep growing. Hannah is home but we are keeping her in our prayers. We heard that Stella and Karah are in the hospital. We have not heard from Drew's grandma to see how he is doing. He has been in our prayers also. 


Hope you have a great week. 


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

" 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