Living with Spinal Muscular Atrophy Type 1 - Magic DVDs and Having Hope

Its been raining here today. Its funny how when the sun shines you feel full of energy (even when its super cold out). Today, rain  dark and it was in the 50s and a Blah dark wet day.

Elizabeth and I watched the DVD version of BBCS Life narrated by Oprah Winfrey. Bought the series( used but in great condition). Lizzy loves watching them. Great learning experiences. Lizzy says "These DVDS are magic" Today was a good day to watch them again. Watching Lizzy's face was amazing while she was so captivated by this unique series about species that live in our earth. I just love her so very much!!

Paul has had no call backs on the job interviews. He has called and went back for his own follow ups and NOTHING. This is getting scary. To be cut off unemployment and STILL every week applying for job with no success. The news says  "Its getting better in the job market!" He still has not been able get hired . He was talking to one of his people he went to school with and they said" The way the tech school does it is that they only have to get 80% hired jobs with  grants " They hope people drop out  after mid term because they still get paid. . Paul was on the list NOT to find a job for( From the tech school he attended I guess)  from the beginning because of his age!" Is that a bunch of BS or what?  They were hoping he would not of had a 4.0 average and drop out. Well, he didnt drop out and had a 4.0 and NEVER missed a day of class. So, what a scam but..... he did learn things he didn't know and needed that schooling to secure himself a job when things open up. There is no PROOF of this to our knowledge but....can you believe he was told that? He showed them huh?

Its been so peaceful here last few weeks with just the four of us. No drama.... just peace. More positive.
Paul is pretty positive he will find work soon. I am just so worried about losing the house but trying to keep positive. The monthly bills are draining our money. I can not wait for spring and of a gas bill and electric bill. If If we could afford it we would go with solar energy. It would cost us a fortune but it would save is so much .
Just paid off all the utilities and house payment. Huge expense. Over 600 for a monthly gas bill? What is up with that? and over 300.00 for electric?? Why are these bills so high? I have Just Energy and locked in my gas bill a few years back. Was it that much colder this last billing cycle than ever before?
I can almost cry sending those checks out but they are paid for another month. "Sigh of relief" Then, soon it will be yearly insurance premiums for car and the van. ugh... It will all work out some way some how. I believe that God watches over us and he will make sure somehow we will survive. We have HOPE and just look what we have accomplished with HOPE.

Its Christen's 28th birthday tomorrow. It did not think any of my kids would be living with us still when they are 28 but you know I guess this is way its suppose to be.

My tip for this  post is to use Clorox wipes or Cavi wipes to keep door handles, phones, counter tops, faucets, arms of chairs , tables, toilet seats,etc every day to keep germs away . Not just during flu season but every day. Make sure you wash your hands after you get the mail. If you use suction caths try to get sleeved ones. Cuts down on illnesses . Make sure you wash all equipment including masks after every use. Just some things I do to keep our home safe for Lizzy!

Many prayers for MJ who is in the hospital having a procedure done, for Leah Miller to make a
quick recovery, for our friend Sheila and her family , for us to stay positive and say extra prayers Paul gets a job soon.

Magic is believing in yourself, if you can do that, you can make anything happen." 
-Johann Wolfgang von Goethe

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

Meeting The Band Perry and Positive things - Living with Spinal Muscular Atrophy

Lizzy called her Uncle Calib for the third time this week this morning. " Please Uncle Calib let me meet the band Perry Please Please I love them so much!" Then she says " I love you Uncle Calib!"  I know she got to my heart I am sure she got to his too. He does security for celebrities in our area. He was security for The Band Perry. He made no promises but we got a call this afternoon from him and He says "Be here as fast as you can I got you a private meeting with The Band Perry!"  Oh my!! I wanted to cry! he hooked her up!!
Lizzy broke out in her red blotches all over. She gets like that when she gets excited or upset. I hurried and got her coat on. I did not have time to change. Getting Lizzy out the door was my main concern. It was her day, it was her dream and her time  to shine. I stayed home while her Mom took her quickly to the Crystal Palace.  Thank you Kimberly, Neil and Reid Perry for taking time out of your busy schedule to meet our little shining stars Lizzy and Kayleigh. Thank you Calib and The Crystal Palace for giving Lizzy this special gift. Lizzy got to have a special private meeting with The Band Perry( Kimberly, Neil and Reid Perry) and is at the moment still star struck. They are the sweetest people Christen said. Kimberly Perry went and got Lizzy and Kayleigh( Lizzy's friend ) The Band Perry t-shirts . Neil Perry kissed Lizzy on the cheek. Lizzy is still awed. She got to watch the sound check too. Kayleigh got to stay for the concert tonight but because of recent out breaks of Influenza and RSV Lizzy had to come home. She doesn't like being in huge crowds when there is illness like that around. I guess we programed her that way with out even knowing. Lizzy told me" The Band Perry is beautiful!" How is that for a special day in her life? I am sure that today will be a memory she will NEVER forget.
She called me on her Mom's phone after she left and she was actually so" star struck" that she had such excitement in her voice I could feel her aura just glowing even though I could not see her at that moment. I was right when she came in the door her she was glowing.

Paul had a great interview Friday ( the crowd roars!!) He also did testing. Hoping and praying he gets a job soon. This one would be so great!! Its been two years here this coming week that his place of employment closed its doors and was sold to a foreign company. He was not hired back because they busted the union and would not hire back union officers. Paul was UAW  health safety, skill trade rep besides working full time in maintenance. Its been a bad last few years but we are getting through it .
Lizzy is doing great!! She has handled being serial casted with the same casts on over a week now. Her teacher has had a cough so we have not seen her this week but that is okay we want you to stay away with even a tickle in your throat.She is coming back on Monday.
Its been quiet here all week with Lizzy's dad not being around,. Lizzy has being extremely good this week not as much whining from being bored. Paul and her have been spending lots of time together.

Some sad news came our way. My niece's boyfriend was killed instantly in a car-motorcycle accident in Florida this  past week. Keeping Ariel  in our prayers.

We need to add Leah Miller your prayer list. She is pretty sick . Corbyn has been sick too. Christen's friend's Melanie son Lincoln is in the hospital with RSV and pneumonia. Please add them to your prayers.

On a good note thank you to my dear close friend, You are always there for me. Thank you for being in my life. I love you with all my heart.
Thank you to all my friends that are there for us.We are so lucky to have each one of you in our lives.
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Making Lemonade- Living with Spinal Muscular Atrophy

What is the phrase people say" When life gives you lemons...... oh yeah,.... make lemonade?" Well, things here have been plenty lemony lately and at times seems it will not get any better. I am so very tired. I don't sleep well. I have being trying so hard to keep positive energy flowing here but dealing with some of the issues going on in our lives its getting harder to keep those positive energies flowing. One negative person can suck all that positive energy right out of you.

Lizzy is doing great so its not her.She helps me through times like this. Her and my family.We are a close family. My girls all have good hearts and are so caring.

Seems like dealing with stress as been a part of my life a lot these last few months. My mother's hospital stays and the fact that my husband has not been able to get a job. Today his unemployment was cut off with out notice. He was informed he had gotten another extension( a month ago)  11 weeks and today he received the statement where he did not get paid benefits. He has applied all over every week since he has been out of tech school.  He has great phone interviews but they do not call back is just his age? His resume is very good.  Makes no sense why he can not get hired. We have kept all our household bills paid since he was laid off some way or another. Lizzy and her mom lives here too with NO HELP from Lizzy's Dad for anything for a very very long time. We have learned to adjust and only buy what we have to have.  Now it will be even harder to survive. Now what?  

Paul and I made for last years income the same amount I made when I worked full time the last full year I worked over 8 years ago . I was in shock when I looked at our tax info. How scary is that? Thinking back about ten years ago we thought would have a nice nest egg by the time we hit retirement age.My retirement money has been gone for things we had to do when our life changed and when I had to quit my job. There is nothing I or my husband would not do for Lizzy.

Lizzy's new doctor that we had 2 hour consultation with months ago (after our doctor of many years left) was terminated last Friday. There are NO doctors here that believe in NIV protocol and that will help us get what we need at a local level. That was like a kick in the gut. I contacted our old doctor that left and he gave me a few options but....... Lizzy has NO local doctor until March here and that is a maybe. He said" I do not need to worry because I have myself and that doctor in Madison ( he told a friend of mine that)". LOL  Hopefully, the doctor he recommended to us here will take Lizzy on as a patient. We need one locally for scripts,blood work and check ups.

Lizzy's suction machine no longer holds a charge and we can not get her a new one. We were cut some of her supplies AGAIN from Medical supply company. Lizzy was finally approved for her new seating for her power chair over a month ago and they are still waiting on some parts to get here .She is being serial casted again because she needs new AFOS after the last time because she pushed herself out of her old ones.

Our gas bill alone for last month was over 600.00!! I am calling Monday and trying to find out why it was so much considering we have Just energy and at a locked in price for gas for two years now. Never ever in our lifetime has it ever been that high. There are other bills I am stressing about also. 

We will get through this as we have before. Divine Intervention always seems to help me think more clearly and figure things out. That is what has gotten me through so much these last 7 years. 

Some of our friends have helped us out more than they will ever know in our really rough times. 

I had a friend that really used to be close to us call me late last week( out of the blue ) and was so negative about doing anything to help these kids . She herself is a parent of a child with SMA but with a different type than Lizzy. As, much as I tried to bring her more positive the harder she tried to be more negative. I realized I was getting no where in trying to help change her thoughts that night and told her I had to hang up before she sucked me up in her black hole of negativity. I laid awake most of that night just trying to figure out what has done this to her. How can these kids do well in these deep dark holes that these parents have created for them. How can they understand what blessing and miracles they are with such a negative home environment?

Lizzy still says " She loves herself!" and I do not want anyone ever to change her thinking. Do we believe there is a cure coming?  I believe God gave us what we need to heal others and we  just have to find them. I believe that being honest and living a good positive life( positive energy) helps us find the things we need to heal others and ourselves. Healing starts at home. Living life for each day and celebrating life is what its all about. Even in my thoughts and trying to figure out how we can get through this I try to stay so positive. It gets  harder and harder but we will make it. Then, maybe soon we will breathe a sigh of relief if Paul gets a job.

Lizzy is growing and still makes us laugh at her sense of humor. She is like adult sometimes  in some of the things she says. Every night I hold her in my arms before bed kiss her head and we say our prayers. Its a special time just her and I share. 

So, my advice this time is keeping positive makes your special needs children thrive. Just love them for who they are and let them know they are truly miracles. 

No matter how hard things seems someone else some where is having a harder time. 

" We believe in miracles because we live with one!" 

www.our-sma-angels.com/elizabeth

Lizzy brushing her moms hair while in her stander

Lizzy brushing her moms hair.avi

Sickness, blizzard and facebook works better than calling 911 - Living with Spinal Muscular Atrophy Type 1

 Jan.23
First thing I want to ask is to PLEASE add Lizzy to your prayers. Not sure what is up but she has been asking for extra bipap, was complaining of stomach issues and just not herself. Her O2 is great, heart-rate has been normal been doing some extra treatments but she seems to have a hard time shaking what ever is going on. I thought she was doing fine then again tonight and last night she insisted to be put on bipap around 6pm.
Wish, I knew what was this is.
Now,OMG this last week has been crazy. My mom was admitted to the hospital again last Sunday. My step father called me around 10:30 am last Sunday. He said "To have me or Christen to come right over as mom needed us to help her have a bath because she was having a heart attack and wanted a bath before we took her to the ER. " What?? She wants a bath while having a heartache? You say what?  I don't not think so.I called 911 immediately and had to get myself dressed and out the door.  Hooded sweat shirt, blue jeans and leopard slippers. Paul and I were out the door and at mom's in about 6 mins. Mom had a EKG and it showed she has stress on her heart. Oh my......back to Bloomington to the hospital. We were at the ER for approx 5 1/2 hours . I had to go get a nurse about 5 times and demand she have something for pain. She was in intense pain . It was terrible to watch her suffer they way she was. Finally, they gave her nitro . That did not stop the pain in her chest so I went out and got the reception people to get the nurse yet again after a hour or so wait again. Finally, they gave her morphine, That did the trick.
I was at the hospital Sunday, Monday and Tuesday with her. This time she was in a unit a step down from ICU and had a very bad hospital day. The nurses were not the most nicest and in fact were RUDE. To make a long story short she was released on Thursday. After, she was back to Pontiac she had to go to Wal-mart grabbed the portable wheel chair and she was off. Paul and Dawn had to find her. She was shopping!! It took them almost 2 hours to finally get her out of there. Go grandma!!
The van broke down on Tuesday. The heater fan quit working. Below 0 wind chill factor and the van goes out. We did not have the van until Saturday.
Jan.28,2011
I am sorry I still have not finished my post. Lizzy has been sick all week . She has been extra bipap until yesterday. She said her tummy felt full. No higher heart rate, No lower o2, no residue yet she seemed to be in pain. After trying everything I knew and picking the brains of my close friends. I tried fresh lemon( squeezed a couple drops down her g-tube) and ginger compresses she is back to herself. I am just glad she is better.
Feb 3 ,2011
Okay finally I am going to finish this.
We had a blizzard this week. My daughter Dana was stuck in a ditch that no one could get to her for over 4 hours. 911 said they made no promises.  She walked in the blizzard to the nearest farm house. A friend read on facebook that Dawn had posted prayers to keep her safe. The friend Lacey sent two guy friends out to get  Dana on snow mobiles. As I always say " We believe in miracles!" facebook worked better than 911!!

Suggestion: When your child's tummy hurts try taking a bowl of water add 1/2 tsp ginger 1c water (The spice) mix well put in microwave approx 25 seconds . Then put a wash rag in the water squeeze out excess water and make sure its warm but comfortable as a compress on the tummy. Sooths the tummy.

Happy 14th birthday to Madison Reed tomorrow!! Have a wonderful day princess!!

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

Sewing, Juicing and a few of MY tips- Living with Spinal Muscular Atrophy

I have been so busy. I got a new sewing machine from my Dad and Stepmother for Christmas and I have been making pillows like crazy. I have NOT sewed since I was a teenager. It all come back though. Lizzy lays right there on the dining room table with me as I sew. She talks to me the whole time.

Lizzy is doing great. I have been juicing her organic spinach and Granny Smith apples and she actually is stronger than she has been in awhile. Still using donor breast milk  besides herTolerex cocktail. I make her diet as alkaline as I can.  

 We ventured out yesterday to Easter Seals and Hobby Lobby. I got some 90% off Christmas ornaments and some material that was on sale. I got to get busy making my bows and making pillows to raise money for our October 2011 visit to Stanford. 

I want to talk about helping get out mucus plugs. Lizzy has been a plugger since she was an infant. I have learned so much from her. She used to get them stuck in the top lobe of her lung. Getting an IPV machine helps keeps the plugs from being so frequent but I have learned to turn her upside down and cough her or at an angle, to use a saline neb treatment to loosen it up , suction the nose out and cough and cough and cough until you get it. She tells me what she needs. So, coming from a child that suffers with SMA that  must be what works for her.  These plugs can be very scaring sometimes and life threatening is some cases. 

I also want to talk about how you should always be stretching fingers, legs and doing mouth exercises to keep what muscles they do have working well. I still sit and hold Lizzy and stretch her fingers,legs and mouth while watching tv. Teeth Brushing is a MUST. I had a parent once tell me that they did not brush her son's teeth because he did not eat by mouth. They still need their mouths brushed 3 times a day and use toothettes in between.
Oh and I hope you are all using D3 helps so much in the winter to keep you healthy!

Okay these are my tips for today!! Just things I do to help Lizzy I wanted to share.

"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth