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

Living with Spinal Muscular Atrophy - Reminiscing on the Year and First Quick tip

It was December 23 I  just had gotten done with Lizzy's bath and I was holding her on the toilet and the phone ran. Twice, in a row. UGH.... so I see by the caller ID it was my mom.  Lizzy was not wanting to get off the pot. So, I missed the calls. I called back as soon as a could and no answer. There was no message  on the voice mail. Hmmm well they must of ventured off some where like Wal-mart. I continued to call several times and still  no answer. That was in the morning.  I figured they would call when they got back.Well, at around 3:00 pm I get a call  from St. Joes  ( hospital 30 miles away) and it was the social worker at the hospital telling me that my step father needed a ride home and my mom had had some heart problems and was admitted. I am like "Huh, excuse me.. what is going on?" I am home alone with Lizzy with no one here as most of the time. No car, no way to leave and a emergency.... No friends to call that live close, What to do? Oh my gosh waves of guilt hit me for not answering the phone and then complete worry fills my every emotion. I said . Okay, after a few seconds of pause...I was ready to think clearly. I said "My four daughters are all out in that area shopping today one of them will stop by and get him and see what is going on. My mother had suffered a heart attack . They transferred her  to a hospital 30 miles from her after the nurse that takes are of her wound on her leg called 911 because her heart rate was 154 and climbing. She had suffered a heart ache. My world has not been the same since Dec23rd.
The good news is that she is coming home tomorrow!! Thank you for all the prayers

2010 was a good year in all respects. A few enlightening experiences I encountered. A few things happened that were not things I would like to repeat. I learned also that Elizabeth is getting older in her thinking and has a opinion on almost everything.  Just love her so much. She is my heart as I have said many times.  All my grandkids I love so much but Lizzy lives with me and I care for her 24/7/ One of hardest things I guess was the that we heard the a little girl that lived not far away earned her wings. That one hurt bad and still does. I have kind of pulled away a bit from meeting new families online. I feel bad about that but I think it was a subconscious thing since that that little girl passed.  Also , my husband not finding work and his health getting worse has also not been good things.  He had a low sugar of 15 and we had to call  911 in the Spring. Then,  my mom having her heart attack that was also something that really hit me hard with no siblings close to help me with her. They live out of the country or out of the state. My sister Rita has been my sounding board these last few weeks over the phone.
We lived, loved and survived yet another year . We had some great trips with friends in 2010 and made some great bonds that will last forever.
We had a wonderful Christmas this year. Its was a good time even though I spent hours the 25th at the hospital with my mom with Dawn and Caitlyn.

My tip for parents:  I use Mary Kay lip mask on Lizzy's lips during her bath and use Mary Kay lip balm on Lizzy every day. Its gets the lip goobies off  from the bipap and the winter dryness from the cold. I do not sell Mary Kay it just works well.  I also put a few drops of baby oil gel in her bath water.

I will have many more to add . I will add a new tip on each post. I will add care info on the next post.


Have a Healthy Happy New Year!!

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

Living with Spinal Muscular Atrophy - Finding ways to help your child

I decided  that in 2011 I am going to focus on helping families find ways to care for their SMA type 1s babies and children. Besides taking (as usual) the best possible care of Elizabeth.  I want to add to my blog about the care that it takes to keep a child with SMA type 1 healthy.  These are my opinions only .

Finding a "Cure" would be a dream come true but in reality many babies and children are dying because families are unaware of ways to help their baby that were just diagnosed. That is what many organizations are doing funding,  research for a cure. We all want a cure but how about these kids that can not even get a bipap or parents are not told there are noninvasive ways to save your child, The letters I receive from parents, aunts and uncles hurt my heart knowing how these parents struggle to get what they need to help these babies/children survive. .We need to take care of the kids that are here and are living NOW!!. Many doctors nation wide do not think parents have what it takes to do the care that is needed on a daily basis. In fact, many parents and caregivers do have the" inner strength" that it takes to take care of these beautiful children. The doctors give up on many of these kids right after diagnosis. They do not research and do not know there are doctors out there like DR.Mary Schroth in Madison,WI at American Family Children's hospital. Many parents believe in their doctors and their opinions and do not research SMA. We are taught at a very early age to trust our doctors and not question them . These kids can live with proper respiratory care . That is the main thing right have diagnosis. A bipap, humidifier and pulse ox can help them get stronger.  Then,  to be proactive in their care. Not to give in and take the bipap off because the baby is crying. You have to remember you are saving their lives. Parents have to face also their child will need a g-tube very soon after diagnosis . A  type 1 starts losing their swallow very early. Many of us also incorporate many other therapies and a special diet in the daily routine. If you want to fight to save your child's life there are ways to do so.

So, word of warning here " I am out to help save as many babies and children as I can by giving the most vital info to help these kids stay healthy ". Stay tune in 2011.

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

www.our-sma-angels.com/elizabeth