Lots of news and updates - Living with Spinal Muscular Atrophy

It has been awhile since I updated. Where do I start? Okay, Lizzy has been pretty healthy since the end December.( Knock on wood and throwing salt over my shoulder). We have not been too many places. Lizzy today mentioned to me, " Nina I have not been sick in a long time its because of our "bubble" , huh? " I laughed and said " Yeah and the huge red stops signs on our doors telling people to stay away if they are even slightly sick" I had to laugh at her. "Our anti sickness bubble". I go a little stir crazy but try to keep Lizzy and myself busy. I discovered Pinterest. (Thank you Andrea!) Saves my sanity!!  My father insists I do not have mental issues  because I am so strong minded!! LOL  Love it!! I can escape reality for a bit and dream among other things. I  started back to sewing again a little the last few weeks. I made Lizzy some new pillows. I have to work on Spring bows. I had so much Christmas and Valentine ribbon  I had from sales last year but did not get to make too many this year. Soon, as I get started making bows  Lizzy needs me to get her something. Like , every five minutes. LOL. She keeps me quite busy. My "me time" and to get caught up is late at night almost every night. I get house work done and get online and try to relax.

Paul was denied Social Security Disability as I stated in a previous blog post. He has been looking for work and previous place employment had his hopes up about rehiring him and then.....never called back or have they hired anyone else so.. that itself has us very puzzled Why is he having such a hard time?? His resume is well written and when they meet him they DO NOT CALL BACK!!  He had two hiring agencies call him from his resumes online . He went in for testing and intensive interviews and STILL he has not gotten hired. I am so worried about what is going to happen. Paul seems so depressed  and his self esteem has been shot in the hiney. We have learned to live with out much it is amazing. Paul , Christen and I do not by ourselves much except what we absolutely have to have. I was looking at my and Christen clothes the other day at how faded and worn they are. Its does not matter.We are healthy and get Lizzy what she needs. If I could of been this way 10 years ago I would be saved so much more. I think even if things change around I have changed so much that I would be just as I am. I live each day as its comes. I thank God every night for what he has gotten us through and thank him for the people I have in my life.Lizzy and I have a huge list of friends and family we pray for every night. We will get through this we always too but man... it been too long.

Lizzy is getting fit for TLSO and AFOS this next week so that will be our time out. She has a gift certificate she wants to spend so on the day we go afterwards since we will be in Peoria we will escape to the mall. It will be our first time shopping in a very long time. Even though its for Lizzy just watching her shopping is worth the time out. Lizzy is getting a new power chair soon so we will need a bigger van for all her stuff. That is going to be a hard one but we will figure it some way,I hope.

Now the news..... are you ready? My daughter Jessica is engaged and wants a fall wedding and ( Drum Rolls here) my grandson Reed Michael's fiance is pregnant.Ali is due in the third week in October. Last weekend was a weekend full of surprises! Being a great grandma at 53 is not all bad. Dana a grandmother at 36 is also shocking but she made me a young grandmother too. Reed is 20 and living with he fiance so we should not of been so shocked. Seeing the 5th generation is pretty neat. I will be glad I could be part of it.

More good news is that we will be attending the FSMA conference in Minnesota this year then spend time with some a great family for a fews days in June and some how will be going to Courageous Kids in Kentucky in Sept. Lizzy has been asking a million questions about both events. She needs to do these things this year.
We has to cancel our trip to Madison this next week because of very important appts here. Its still RSV season and its better safely home than sorry. We hear that have RSV up that way bad and influenza.
I am typing on Paul's old Pc I refurbished myself so.... I do not have too many pics on here.
Rachael turned sixteen yesterday and got a used red blazer ( SUV) from her parents. She attended Sweet Heart at the school tonight.... man..... I can  NOT believe she is sixteen...whoa..... time has sure flew.
Oh and Corbyn got a new puppy he named "Ruby" named from Max and Ruby. LOL.  Its for his 3rd birthday!!
Winter has not been winter this year but if Spring is right around the corner I will take it!!
Stay well and stay happy!!
Add Paul to your prayers to get a job!!


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

Staying Positive and being Hopeful- Living with Spinal Muscular Atrophy Type 1

"These pictures are so precious to me .I wanted to SHARE these again . To me these picture represent HOPE,STRENGTH, PERSEVERANCE, BELIEVING IN MIRACLES, BELIEVING IN YOURSELF AND SUPPORT FROM FRIENDS."

Sorry,  its been awhile since my last update.
Its was quite busy around here and quite stressful for awhile and I think I should not post if I can not be positive. Things are better now.

Lizzy has been doing pretty well and Paul is healing well.

I had the worst stomach flu hit me since 1979 a week ago. I was sick probably 48 hours and 10 hours I had the runs at both ends. Terrible stuff..... I cured my chocolate cravings because I had eaten a  few chocolate truffles before I got sick and needless to say I no longer want chocolate at all. yeah!!ewwwwww

Elizabeth has been getting stronger doing more things and I do not know why. I am so happy. She is lifting her hiney up and moving her head more. She sat in her power chair WITH OUT her neck brace!!Yeah!!!   She is such a miracle!! I have not done anything different so not sure why but, maybe its because I am so consistent on her care. I believe with all my heart and soul you can make a difference just being consistent on stretching, resp care, therapies, diet and the power of prayer.

Please also visit my friend Mary's web-site. http://www.aadietinfo.com/ Her daughter and her have been working on this web-site to help clarify the SMA AA diet and the correct way to use the diet and why we do the things we do. I believe using the AA diet enhanced with breast milk is why Lizzy does as well she does.

A lot has happened the last few weeks. Paul was asked to go back to his old job(  and we got all excited and we did not say much to many people not wanting jinx ourselves. Thinking our strain of bad luck would change. Well, after a great interview and them saying all they need to do is get home office to approve and a drug test and a  physical ( which we were worried about but.... he said he would be able to do his old job) the news is they HAVE NOT CALLED HIM BACK even for the physical and drug test. He has called and they have not returned his phone calls. Grrrr I pray about this among many other things. Something needs to happen quick!! He was denied social security last week. Got the letter in the mail. Now what? I need to stay focused and positive but its getting harder and harder but, when I see Lizzy's face all focus on being positive comes right back.
Hopefully, this year things will turn around for our family.

Prayers to all the kids that are sick.  Healing prayers to the Gaynor family to get well!!

Keep Lizzy in your prayers.

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








Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child  with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them

The End of a Very Eventful Year- Living with Spinal Muscular Atrophy

Sitting here thinking about this past year I sigh and think "We got through so many situations this past year and we are still  here!" RSV, illnesses, Unemployment,  not knowing how we would get through the month, Paul's accident, living situations changed, putting my mother in the nursing home, loss of so many close friends and the list goes on and on. Taking a deep breath I think "With out our close  friends and family we would of not of gotten here". The power of prayer is a magnificent thing. You can feel all around you that people are praying for you . I would close my eyes at times thinking "How are we going to get through this? " and then, I could feel the prayers surrounding me and it was like we were led through a storm to a safe place. Thank you all that prayed for us and those that helped us out. I am forever in debt to your kindness.

My Mom is very good these days. First time since I can remember Mom's Christmas cards that did not have so much mumbo jumbo written on it that did not make sense. She is getting the mental and Physical help she needs and that itself was my best gift this year.

Paul the wonderful guy he is took my healthy grand kids out to see my mom for her Christmas party. The kids had a blast and mom was so tickled to surrounded her great grand kids. Lizzy was home sick with Christen and I both.  The very next morning I hear groans and some scary sounds coming from the upstairs bathroom. Paul was vomiting and had severe diarrhea. Being an insulin dependent diabetic he had me worried. Granted I had no sleep the night before because of doing treatments on Lizzy around the clock. Christen help me tag team Lizzy and slept on my floor in my room to help with Lizzy. Lizzy was on supplemental O2 for two days. She ran high fevers and then it settled in her chest. So, here I am taking care of Paul too. Disinfecting every time we went in the bathroom besides every inch of the house!! I would hear him down stairs and I would run down stairs and clean that bathroom too!!! I was a "Freak!! OH my goodness!!
Lizzy and I have not left the house in two weeks. No family gatherings for Christmas Eve and Christmas day. We were home and safe. Lizzy had a great Christmas even though she was sick.
Lizzy was still having problems yesterday.She had thick mucus in her I could not get out. I tried to figure out what was going on and her sinus passage was blocked. So, today I used MFR therapy on her some neb meds her and got the blockage out. She has been so much better today.
Below are pics of her at the Rotary Club's Christmas party a few weeks ago. I will have more pics of her later.

My brother in law was in a coma for two days and the doctors said "They did not think he would survive." Well,  I am here to tell you that after we requested prayers from family and friends and he came out of the coma today spitting and sputtering!! Divine intervention!! The power of prayer and positive words. Believe in miracles because they work!! Thank goodness my brother Rory and his family are there with Rita .
Sending healing prayers to MJ also. She has been sick for a long time. MJ get better!!  Sending healing prayers to Sophia Gaynor too!!

Thank you all that are in our lives and Thank you for your continued prayers!!

2012 will be a great year. I feel it!!

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

Just a quick update- Living with SMA

Wrote this a week ago and I guess I did not finish!! I will update again soon!! Its been a better week!

As,  Christmas approachesI have been going through some thing  lately that seem to be making a huge impact on my emotions. A death of a son of a couple that were our very best friends over 25 years ago three weeks ago. Then, his father....... our old friend died a week ago tomorrow last week. Did the son tap his Dad on the shoulder and tell him it was time to go? Imagine what that family has been going through the past few weeks. Losing a sibling and a son then, to lose their father and X husband. I could not imagine. Lizzy and I have said prayers for them. It hurts me to know they are all going through such a difficult time
 It was like we had gone back to a different time seeing many old friends and acquaintances . We are all old!! Where has these friendships gone ? How was it back over 25 years ago we could not seem to live with out each other and then we do not even know each other now? I still have many feelings embedded in my heart for some of these people but how can we lose touch like we have? I did not even know I missed my old friends until I saw them again. My life took huge changes again when Lizzy was diagnosed. My old friends  have no clue as what my life is these days. They have no idea what it is to fight so hard to save a grandchild that your care for that was diagnosed with SMA. They have no idea how I try to help as many families as I can with what I have learned from caring for Elizabeth.  This past week wore heavy on my emotions besides my heart.
Lizzy had the Rotary club Christmas Party on Tuesday. She loved it. Its a great thing they do for special needs kids.
Lizzy had swim therapy today and worked so hard today. I was so proud of her.  She said ,when we got there  that "She could not wait to get in that pool!" I knew she like swimming but now I know she loves it.
Lizzy is our miracle. She is so special and is so happy all the time. I am content with that.

Special prayers to our sick friends!! Asking a few for me too. My headaches continue. I have had them since the car accident. I need to get to a chiropractor but when? I have no time to do anything for myself lately.

 Have a fantastic holiday season!!
"We believe in miracles because we live with one!!"

Christmas is sneaking up on us - Living with Spinal Muscular Atrophy

Its been an interesting December so far.
Lizzy had a bad ear infection and then , she started having some plugs. Got her on an antibiotic and she seems much better. Her fever caused her heart rate to jump to 173!!! She is still on extra treatments and experiencing some plugging. UGH..... I love the season just not the illnesses that accompany it. Then, we get out our Christmas tree that has 700 pre-lit lights on it and half the lights are not working.  I know we have had this tree for 6 years but... geessh come on now!! So, since funds are tight Christen and I had to take ALL the lights off the tree.  That was a very tedious job!! A pain in the hiney!! We had wanted to get some lights at Wal-Mart or K-mart. All the white lights were gone!! First week in December and all the Christmas lights were sold out!!  Really? Can you believe it?  Sold out!! So ,after all the work taking those lights off it sits in the corner "Light-less" until we are able to get some light. Christen was going to go get some at another store but..... the van is broke down again!! Paul had changed the roaters and brakes yesterday . Then, Christen was taking Rachael and Robby home and they smelled something burning. Smoke came rolling out from where the tire is.  She walked in the house screaming "That her van was on fire!!" Paul went running out there.  He said " Not sure what is going on but he thinks her brake stuck on." So, they are out there together bleeding the brakes as I write this. " Please pray it works.

Tomorrow, will be our 37th wedding anniversary. I can not believe how fast life goes by . Seems like yesterday, I was sixteen getting butterflies the night before our wedding. Every-one said it would not last. I figure lasting this long in a  marriage we can accomplish almost anything!! Its has not always been easy. Last three years have been  very challenging.

Lizzy is getting better .  My mom is doing better than she has in years!! Christen's neck and jaws are improving. Mine too just not as fast as hers. I am losing weight SLOWLY but losing!

Keep, Hannah Price in your prayers! MJ too!! I have  NOT been updated on Stella , Kennedy or Nick so they are still on our healing prayer list!!

Thank you to all my friends for being there for us!!

"We believe in miracles because we live with one!"
Happy Healthy Holiday Season!!

www.our-sma-angels.com/elizabeth

Dawn just sent home some lights. The tree is now decorated!!

Being Thankful- Living with Spinal Muscular Atrophy

I am thankful for the little miracle that lives with me and changed my life. I am thankful for my family.There are my dear friends that I am grateful for. I am so thankful for them every day of my life.
I am thankful for the many wonderful moms that have donated their gift of their breast milk to keep Lizzy doing well.
I am thankful just being able to care for Lizzy and keep her healthy as possible.

Have a blessed Thanksgiving!!!!!!!

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

Getting that holiday feeling - Living with Spinal Muscular Atrophy

Lizzy and I have been obsessed with the Hallmark channel since last weekend. We have been watching Christmas movies on there.  Already! I think watching them makes me believe in miracles that much more.
We love that warm fuzzy feeling the holidays give you.

Lizzy is on some extra bipap tonight. Not sure if its her teeth or what. Her molars are coming in and are so swelled!! She is NOT sick( I hope any way). She just needed a bipap break.

We had a very eventful day. Lizzy had Speech at the hospital . We were all in the van and was rear ended by another car. Yeah, sitting at a stop sign waiting for traffic to clear and  negligence of the driver that hit us to follow traffic safety laws and pay attention,  the damage to the van is over$ 1500.00 . Lizzy was laying on the seat snuggly in her  EZ on seat belt surrounded by pillows and said she is fine.  Christen's and my necks hurt and we both had headaches but took some Motrin and so far we are fine now.Corbyn was unaffected. He was snuggly in his car seat. My head flung forward and Christen's must of also. I guess we will see tomorrow how we feel.  Grrrrr I am just so mad at that woman for being so careless. Christen went to our insurance guys office and then had to get an estimate. They are not sure if the frame is sprung or not. The bumper is ready to fall off!! What else is going to happen to us? But....Just like everything else we will get through this.

Paul went and saw the doctor last Tuesday and  he recommended he files for disability immediately. He injury from July has disabled him and to add to the news they are pulling his CDL licence( Big truck) because he has not maintained his blood sugars  for 3 years. for his diabetes.  He had a really bad low sugar a year ago . He was quite devastated by the news but.... we will  get this also.

Sometimes, I think I should not post because its not a lot of good news and seems like something is always  going on but, I feel if I write about it maybe it will get better. Sometimes you have to forget the bad, appreciate what you have and look forward to what is coming next. I can not give up and I have to keep trying to stay positive. Just look at Lizzy and how happy she is. How can I not stay positive with her around. She still says " She loves her life!"


Good thing is Lizzy is doing well and loving school.
Prayers for our friend Chase he is on the hospital.Also,  for our friend Sophia to heal well from her growth rod surgery.

Thank you to my friends for being in our lives!!
Happy( Soon Coming) Holiday Season!!


"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child  with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them