Moving Right Along - Living with Spinal Muscular Atrophy Type 1

It seems Lizzy has bounced back and back to her norm. "Sigh of Relief" This last illness scared the bejeepers out of us but she bounced back quicker than any if us anticipated.
We went to church yesterday with the family and Lizzy actually loved it. Caitlyn and Corbyn were baptized and Dawn joined the Lexington Methodist Church. So, we may be going every week. Since, she goes to bed earlier and up earlier it was not hard to get her ready to go and  on time. We actually were early yesterday. Isn't that amazing. LOL  I think we will be going to our local church though. I belong to the Methodist church about two blocks away so we could even walk and no loading the van would be necessary. We shall see how this goes.
As, I stated we have went through some changes since Lizzy hospital stay. Christen is home more and helps with Lizzy's nebs at night while I get some of my stuff done. That started over the weekend. Its seems to help me get caught up on some of the stuff I have to do too. Only problem with the going to bed early is now my eyes pop open at 4:30am every morning!! Lizzy wakes up and says "Nina pleeeease lay back down I am not ready to get up!" So , I lay awake for a few awhile and sometimes fall back to sleep but not often.
Oh, let me tell you about my crazy hair mess up over the weekend. Okay, I have not been able to get my hair cut in months so I have this natural curly crazy hair that is untameable. And .... this natural curly is close to looking like Bozo at the moment. A thanked my Dad yesterday for that gene. Well,  since I went through all the holidays with crazy hair that was turning white around the face I decided to color it. Well , The first time Saturday it came out close to a Hot Pink. Yeah, Hot pink. So, got the color I usually use for touch up and it turned Bright Red!!!!! oh my gosh I was so upset!! OMG imagine.... Going to church with a bright red mop on my head!! Christen laughed and laughed. Grrrrr Any way, I sent her out again to get me a  5R COLOR that my beautician recommended awhile back to fix one of my crazy hair color disasters. It worked but my hair is so long ( for me) . I hate my hair long because its so unruly. My kids like my hair longer and told me I could use a curling iron. What ever? I usually do not have time to wear make up let alone use a curling iron. Since, I no longer can afford the beautician I guess I cut it myself, curl it or cover it with a huge hat.  I really do not like white hair on me so I need to be careful with hair color.
My plants I have started in my basement with hydroponics and some with grow lights are doing well!! I have to transplant the hydroponic tomatoes this week and set outside during the warm days so they can grow tomatoes. Beautiful looking. I have flowers that are also doing well that have been under the grow light that are doing well too!! I need to get all those transplanted and start more. I love growing my own vegetables and flowers.
Next week Lizzy finally gets her new TLSO!! I have her back to what is was before her illness. That took time but we got it back!! Then working on getting her a new collar since she out grew her last one. Then. she has a wheel chair eval for first week in May. Hopefully, the power chair route will not take that long. Then she will be all set up for summer.
Sorry if I sounded emotional last few posts. This last illness took a huge toll on all of us and we did not really know how it was going to effect Lizzy but..... She is back to herself with a tad less whining!!
Believe in the power of prayers. It works. Believe in miracles because they are out there too!! Just look at Lizzy!!
Thank you all that prayed for Lizzy and helped during this last illness!! You are the reason she has bounced back!!  Love you all!!
"We believe in miracles because we live with one!"

Things are changing - Living with Spinal Muscular Atrophy Type1

Lizzy is doing a lot better.
 Its was strange but long week,  last week.
Christen is on" HIGH STRESS" level. She will not let Lizzy fall asleep with out bipap and makes her go to bed hours earlier than before. I sleep with Lizzy and do  all her treatments so its been a hard adjustment for me. I get my work done around the house when Lizzy snoozes on the couch a hour or so before bedtime. That, was the routine. Lizzy will not let Christen do her treatments after we got home from the hospital. So, I am getting way too much sleep for me. My whole life its been 5-6 hours a night and I was ready to get  up. In turn I am tired all the time now!! I get less done and I feel like I am being controlled by my daughter and that does not sit well with me. I am also on STRESS ALERT status too
My younger sibling Milinda is home trying to get her father ( My stepfather) in a nursing home. She has NOT discussed anything with me at all. She had plans to put him in the nursing home and get a trailer and take EVERYTHING back to Kentucky with her. That would of been fine if she did not have 4 other siblings and our mother. I am not going to comment too much on that situation but...... I did tell my mom I wanted her to make sure I got pictures.  I have grown older after I was given things from my grandmother when she went into a nursing home and the items were removed from my car by my stepfather years ago I decided at that time material items do not mean much too me. Its family that means more and memories.  So, I am sitting back and watching to see what goes on with my mom. I just want her to be taken care of and get what she needs. I guess they are putting my stepfather in her room at the nursing home and mom is not happy about that at all.
Easter was good. We went to Dawn and Jeff's. Lizzy did very well. It was a good day.
Paul has still not been able to get a job and went to see a lawyer today about his social security denial. He said he will take his case but its going to take some time...... He has to refile.
I am not sure what is going on with Christen after Lizzy's last hospital stay but she is staying home more. She is emotional and keeps worrying about Lizzy. Its like she is over careful with her now. Lizzy does not like it either. We are thinking because her back got so bad in the hospital from laying on the one side watching the door Lizzy might need to spinal surgery this year. Something I do not want to think about. Her lungs are fine but getting her back to what it was before this past illness has been hard.
Lizzy is getting new power chair eval the first of May. I am so excited. She has out grown hers.
So many changes going on. Not sure if they are all good but life as we knew it has changed forever.
Many prayers for Lizzy's BFF Sophia Salus. She has been sick.
Thank you for all the prayers they worked and keep them coming!!
Thank you all for the wonderful cards and gifts while Lizzy was in the hospital!!
You made us feel so cared for and loved!!
" We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth

No Place like home!! Living with Spinal Muscular Atrophy Type 1

We got Lizzy home from the worst illness she has ever had on Sunday. Thinking back over how sick she makes me wonder how we went through this or actually her being so brave and fighting all the way. Lizzy "loves her life" she says .Lizzy got really sick Tuesday March 20 in the morning and plugged . It plays over and over in my head the events of that day. Bringing her down stairs while she was on bipap and getting her on the stretcher with my house full over EMTs and Firemen was the least of my worries. Soon, as we got her on the stretcher she had this look in her eyes, turned blue actually purple and was down for a few minutes. Christen and I were like two crazy woman. I grabbed the cough , with divine intervention and the help of angels I was able to get the plug up .  I got her back . "Phew"  I knew I had that divine intervention because you just knew there were presences here because you could feel them. It was like her whole face was purple before we got the plug out. I was barefooted walking down the ramp to the ambulance coughing her every step of the way to keep her air ways open. Oh My gosh......... we did it we got it up. The EMTS backed up and let me do what we had to do. It was amazing. A voice from behind said" Let them do what they have to do because I was here the last time and they know what they are doing"  Most of them we had talked to previously but..... I really never thought they would back up and not try to take over but they did.
Thank you God!! Then after we got her to the ER the nurses got me some socks. How embarrassing. Any way Lizzy was medflighted to UW.
Lizzy worked hard from Monday to Friday getting junk out every two hours. Blood pressure was high. Friday is the day I think I aged another 10 years in a matter of seconds  because of the Respiratory Therapist that was doing Elizabeth treatment on Friday. Well, the RT started getting a plug out if Lizzy and would not let Lizzy recover. I was screaming at her.. Lizzy was dropping dropping and that old Bitty would not listen. She was focusing on the junk by DEEP sectioning with out letting her recover. Lizzy was dropping to the 40s O2. I was then removed from the room and Lizzy was intubated. We know Lizzy had to be intubated but not the way she was intubated. She should of not been put through what she was put through. She got better almost immediately after the intubation but she watched the door for the three days to make sure that  RT would not come back to her room ever.  More to the story but..... not worth getting myself all upset. Not something a eight old should have been put through. Any way, the angels worked hard that day to get Lizzy through that also. I believe Lizzy has somethings to do on this earth and it is not her time to leave.
She is a very special child and she has God's work to do by helping other families.
I love her so very much it hurts my heart to know what she went through. She will not talk about it and says "she does not remember only.... it did not hurt".
She kept all the docs and nurses laughing at her with the comments she would make. Like, "Okay Nina Get my nurse to get my RT because I have a rattle right over here!!" She also was asking for salami and pickles!! She is such a hoot!!
After, she was extubated  she started talking that day and did not stop until she feel asleep that night.
Lizzy had a very quick recovery, What started out what seemed life threatening illness turned to healing and got better every day.
 I AM SO GLAD we are home.
Thank you all for the prayers!!!
She has had a great week so far!!
 "We believe in miracles because we live with one!"

Lizzy UPDATE- Living with Spinal Muscular Atrophy

 Lizzy is doing well and has NOT shut up since they took the tube out! LOL." She wants to go home" she says. She has a bit anxiety right now because of the "circumstances" surrounding her getting intubated. So, after today the plan is getting her weaned off bipap for at least 4 hours to get her home. The doc that intubated her (Jen) did an awesome job with intubation by the xrays she did not even come close to her vocal cords. That is probably the reason she is talking so much now!! She is so loud too!! She is also getting the Pixie bipap mask today made by RESMED. She thinks its a "Tinkerbell"mask and magical!! LOL"We believe in miracles because we live with one!"

Happy Spring!! - Living with Spinal Muscular Atrophy

Loving this weather!!

Corbyn my grandson turned 3 on Monday!! He spends a lot of time with me along with Lizzy and I would not change that for anything! He is such a cool kid!!


Lizzy has been doing VERY well since December. She has a sinus infection right now but doing well. I mean really who doesn't have sinus issues with this weird weather. Got her on the Zpak . She did great on blood tests last week. One poke and they had to get a lot of blood and drained one vein dry and first poke on the other arm and they got it!! These are our locals!! I insist on blood work every 6 months for her to see how she is doing with her diet and over all. First time it was done locally. Hope it works out. They never left a mark on her. Amazing. My good friend Mary said "It was because of the Vit K she has been getting since last fall" Just hope she is doing well. They have to send off her Essential Amino testing , Carnitine and fatty acids. . I believe they said they were sending to Mayo. I am anxious to see how she is doing.
She has not had school in three weeks because her teacher has been sick. I have her busy with Reader Rabbit and some Arthur projects. She is loving it and actually on the computer programs longer than she has school!!
Lizzy was fitted for a new TLSO  and we will be picking that up soon.
Her and I have been stuck home for months!! I guess that is a good thing because we were only ill during Christmas. Some sinus for us all but that is normal for us.She is doing swim therapy, OT and myofasical release.

Its been awhile but with this early spring weather I have been busy starting my tomatoes, flowers and some green peppers from heirloom organic seeds. I have been using a grow lamp on some of my starts 48 tomatoes, green peppers flowers and herbs and hydroponics on 24 plants of the tomatoes. I have all kinds that are heirloom organic seeds from all over the world.
I found some survival kitchen heirloom seeds that can do a 3/4 acre garden.  I am loving this too!! Thank you again Pinterest. Tons of articles on doing an organic garden on my page on gardens http://pinterest.com/fightforliz/gardens/  If you want to start on you own organic heirloom garden then check my pins out!  Have to take care of my family during this roughest time ever and this is the one thing I can do.
 Its getting harder and harder for us to get by these days. Paul has had several interviews and every time we think its in the bag and NOTHING. Keeping our fingers crossed for this last one that he was sure he had after 2 interviews and a pee test with one company. Then, he was called for a 3rd and he was sure he had it . Walked in and there was 6 other applicants ugh........ much younger.  Gosh. when does this end?  Does this man that worked so hard for his family for so many years get a break and get a job? The stress is tearing us apart inside. It sucks getting old!!

Any way we are trying to remain positive and carry on. I am preparing for a huge growing season and plan on canning everything!! Making my girls have a canning party with me!!
Enjoy this weather!! We are trying to!!!!

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

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