Hey, Spring where are you?-Living with SMA

 March. 12
The sun was shining today for the first time in a long time today and  all of sudden it got dark and it started snowing these huge snow flakes. Got so bad we could not see across the street . I heard it thundered out-side too. Then, the sun came back out for a few minutes. We were hoping for Spring soon so Lizzy and I could go out walking. She is anxious to take her newest power chair out and cruising. She is doing very well these days. She is in her power chair 6-8 hours daily. Its like a totally different way of life since her spinal fusion. Amazing.. to say the least. She is so smart but really sassy besides opinionated these days. She is happy and quite content that her mom spends a lot more time with her. She doesn't even complain when her mom is out anymore.

Corbyn turned 4 today. "Sigh". Hard to believe he is that old. Lizzy and him are very close.

The time changed Sunday and I do not think Lizzy and I have caught off from losing the hour sleep. If it means that Spring is closer we will adjust real quick..

Praying for good things to happen to us this spring. I think we are way over due.

We can not wait to get outside and start walking. 

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

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The Next Chapter in our lives - Living with SMA

Thinking about the events in our lives the last almost 10 years I could probably write a mini series. ( chuckle)
Boy, did that feel great to get those thoughts off my chest!! Lizzy and her mommy finally have gotten closer with out interruptions!! Its great to watch the bonding!

Oh a good note Lizzy is doing FANTASTIC!! Great doc appointments in Madison. DR. Schroth  says "Nothing surprises her. She is Just Lizzy"  LOL ! DR Halanski was so excited to see Lizzy. He says she is doing so well!!  
She is such a great kid. She is so full of life and such a joy to be around. She says things that crack you up constantly. She is in her power chair 6-8 hours a day. Moving so much more with her arms. Unbelievable that she seems so much stronger since her surgery.
Today, she has been a bit more handful than usual. We had a phone call this morning her Dad wanted to talk to her for the first time in a really long time at 6pm. She doesn't want to talk to him because all he does is "drill" her about things. She was upset. He did not call her thank goodness. "Sigh of relief"  Her Mom is home now and she is much better.
 We saw one of Lizzy's favorite people in Madison our friend Katie. Lizzy loves her girls too but the weather was really bad so did not get to see the girls :( .

We need Spring to be here soon!! . So we can get outside and actually walk!! Lizzy did go sledding at home last weekend. Loved it.

Starting a new chapter in our lives. Pray it goes so much more smoother!

Prayers for all the sick kids.

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

Winter Bubble, Sinus Infection and Flying to a Germ Free Island with Pixie Dust

Oh my goodness here it is  almost the middle of February and Lizzy has NOT left  the house since the first part of January. The CDC map says the flu is widespread STILL. Lizzy's teacher had strept last week and today thinks she has come down with stomach flu. UGH... So, glad we are NOT in public school. GERMS!! Lizzy said "We all need a Germ Free Island and fly there on Pixie Dust" I laughed. She is too funny. The imagination of kids. Love it!!

I ventured out last week and Paul and I did our taxes.  I went to a birthday party for Calib and Rachael yesterday. I felt like I had escaped! Lizzy stayed home with her mom since they do not have a ramp for her chair. She is in her chair every day and she feels she needs to take it with her every where. Love It!

Lizzy woke up about 5am needing suction today. Plugging, secretions galore, bloody nose and drainage. Yup, the dreaded SINUS INFECTION. UGH. Got her on antibiotic right away. She seems to be doing okay now besides the secretions and extra coughs. She is impatiently waiting for her Web-kinz Valentine Party that starts today at 4PM. Every 10 mins "Nina what time is it? " She is on treatments every 4 hours right now but if she needs to up them I will. I just hope she does not get any worse.

Lizzy's great grandma Hoffner passed away a week ago . Carolyn was a wonderful lady. She loved Lizzy and until she was not feeling well always made sure she checked on Lizzy. She helped Lizzy with a small benefit for our trips to California and Madison years back with the help from her friends. She had not been in touch much the past few years but, would send  Christen  or me a private message on facebook checking on Lizzy. She is the only family member on Lizzy's Dad's side that seemed to keep contact with us. Carolyn had went to holiday gatherings with our side several times. Very pleasant positive lady.  She was very honest in her opinions and I very much like that in people . She will be missed in our family.

Lizzy's mom Christen also had more things happen her this week. A good friend went in and got a cat scan and complications happened and she died at age 34.

Lizzy did the most amazing thing last Sunday during the Super bowl last week end she feed herself!!  The video above!!  We  were all STUNNED!! Wow! That girl never stops shocking us!!

Praying for a great year, Spring to hurry up getting here, all of our sick friends and Lizzy.
Please Keep Lizzy in your prayers!!
Please also forward her donation page to friends and family for a new van for Lizzy. She needs one really bad!!!
Changes are happening all around us.
"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth 

The Winter Bubble - Living with Spinal Muscular Atrophy

We have been living in our "Winter Bubble" since Christmas and it seems likes its been forever! Lizzy and I were in a discussion just the other day and we both decided we need to escape,  soon!! Thank goodness for the internet! That is our only link to the out-side world it seems. Elizabeth is doing fantastic. You can barely see her scar and is gaining weight again.

I have got a lot of cleaning done and plan on getting carpets shampooed this weekend.
Being organized is some thing that makes my life so much easier!!

Paul and Christen had been sick for 3 weeks and coughing last 4 weeks. Lizzy got the sick before Christmas and she got me sick the week of Christmas as I said it my last post.  Her and I got over it a lot quicker than anyone else. I ran around trying to keep everything sanitized and finally convinced Paul he needed to let me change his bedding. Men are so stubborn sometimes!! 

Lizzy is doing well. Just trying to get her up in mornings have not been easy with the colder weather. She says" Nina.. please just let me just lay here and watch TV. " Then , in the tub"Nina just let me soak" She is too funny how she tries to get out doing stretches and treatments still and she is 9 1/4 years old now. She has been doing treatments and stretches since she was an infant and still hates them!!I just keep telling her as I do every day " I only do these treatments and stretches because I love you and I want you to be strong." 

Lizzy's home-bound teacher Becky had to quit due to a change in her husband's schedule. It was very sad to have to lose a person so close to her but.. we have to think positive. Things change and we have to adjust. Lizzy was upset over the holiday vacation about the change but.. I think she is going to be okay. We have talked about it and she knows its no ones fault. She met her new teacher last Monday. Lizzy says. "She is okay"  Hopefully, it will all work out well. Lizzy is a pretty smart kid so I am sure she will do fine. Becky was a special person for all she did for Lizzy.We will always have a special place in our hearts for her. She will be missed. 

I have decided the situation with the "disgruntled soon to be relative" is something I am done letting it bother me. I have come the conclusion "Life is too short to live with such emotional roller coasters" You like us or you do not. We are honest people and we stand up for what we think is right. Family and friends are very important to us  I do what I have to do to keep positive and just pray about it. I went through  a lot emotionally this past Spring /Summer with family things and I refuse to put myself through any more unnecessary drama. I am so DONE. I do not have the time of patience for such nonsense in my life.
I am trying to get myself in "exercise mode"  Its not easy to get self disciplined!


Lizzy does really well with dealing with things going on around her. She has an opinion or makes a joke about things that shock me to death. 

Paul is feeling better from the illness but he has lost weight again. He has been going to diabetic counselor for a few months now and  is still trying to get his sugar levels under control. Keep him in your prayers.

Lizzy had a play date with her cousin today Taylor. They did some crafts and have been getting along really well.

     

Hope you are staying well!!
Adding some great links to some ideas for around the house helpers http://www.onegoodthingbyjillee.com. Great ideas!! They work too!!

Just remember this!!

 Thank you to all the people in our lives.
"We believe in circles because we live with one!!"
www.our-sma-angels.com/elizabeth

New Year and New Beginnings- Living with Spinal Muscular Atrophy

The holidays are over for 2012. What a year it had been. We got through it and ready to take on another one.
We had deaths, births, illnesses, surgery and so many things go on this past year. Taking a look back I take a deep breath and think wow, Its  2013 where has the years gone?
Its sad another year has come to an end  Its exciting that we have a new year to maybe start over some things we tried to take care of.
I have to get busy and get my bows going again. I have been so busy with Lizzy I have not been able to do much as far as extra things like that.  I will get busy here soon as get some sewing done for my mom and bows started. With the flu map and how wide spread looks like we will be staying home even more than usual.
 Lizzy has been "high maintenance" since she turned 8. Its attention she seem to want a lot of .  She doesn't like to give me a break . She needs to be entertained because the words" I am bored" come frequently from her mouth these days. Her new power chair has been life changing the past few weeks. She is strong enough since her surgery to be in it 4-5+ hours a day and possibly more. She is like a different kid while in it. DR. H really made her quality of life so much better. Its so great to see her so controlling more of her life. "Sigh" Life seems so good just to watch her.
1/7/2013
We have all had that "Viral Bronchitis Crude".  I had it for two weeks. Took my ol time remedy of Cayenne Pepper, ginger, honey,water and organic cider vinegar for 4 days . It took my sore throat away helped me get the phlegm up . I went to the doc and I was put on Zpack. I could not get over the chest congestion. Felt like I had a Sumo wrestler was sitting on my chest. Christen has had it for over two weeks and Paul is on week two with dizziness and so very sick . He has been to the doctor twice and I am so worried about him  his stubborn grumpy self refuses to go back. I am afraid it turned into Pneumonia..... Lizzy was sick for two weeks also but we kept her illness from going to her chest but it did take two antibiotics to get her over it. I pray she does not get it back from Paul. He needs to get a shower, change his germ filled clothes and let me change his sheets. What makes men to darn stubborn? He makes me so mad!!!
Lizzy's BFF was life flighted to Madison with RSV. Please add her to your prayers!! Her name is Sophia Salus.
There is something I need to write about. I have a very strong bond with my family and want to spend the Christmas holiday with them at least one day. You never know who will not be here next Christmas.  Last Christmas we were all sick and could not have Christmas Eve and Christmas Day with the family. Then in June my step-father passed away. Who knew? You know you need to spend as much time as you can with family. We had plans this year as usual to have Christmas Eve together with my mom,our kids and grand kids at Dawn and Jeff's. Its not about the gifts its about spending family together. It was planned on Thanksgiving. Well, this year one of the "soon to be relatives" got down right hurtful right along with her parents plastering terrible things all across face book that were untrue and really caused a lot of issues from being so childish and rude. The things that were said were so terrible and untrue. It was like middle school drama and uncalled for. You know..... I am just done trying with her period. I have enough going on and my life and you can only try so much. If she does not want to be a part of our family there is nothing we can do about it. I pray about it often . I have given it to God. Just remember family is so important but if an outsider comes in and causes so much drama you have to try to get it worked out if you can. Sometimes its so impossible you just need to let it go. You did everything you could to make things right and they still will not budge then is that is all you can do.
On a good note we are still here. Life is never dull with Lizzy that is a sure thing. She just told me this morning" she thinks she needs a bra." I was shocked yes but she is getting older!! But...... a bra?  She is nine!! LOL  Never dull with her,  as I said.
Thank you to my dear friends that helped us again this year get through the year. I can never thank you enough for your kindness and caring!! I thank my mother in law for her generous Christmas gift that helped pay to get the van fixed. Its broke down the Sunday before Christmas and needed a new fuel pump. I think prayers and believing in miracles is what get us through!!
I will close wishing every one a Happy Healthy New Year!!
"We believe in miracles because we live with one!!"
Keep us in your prayers!!
www.our-sma-angels.com/elizabeth

Bouncing back - Living with Spinal Muscular Atrophy Type 1

After,  I was a total " freak"  about Lizzy's Spinal fusion its taking some time but, she is almost back to herself. I had to realize it was 12 hour surgery , she has Type 1 SMA and sometimes it takes time to regain things back. Watching her in pain and not able to get comfortable hurt my heart. Her voice is in full pitch now. No more quiet days. She was not letting us move her legs on purpose. I thought the surgery has caused her not moving her legs. When, I caught her moving her legs and they were not tight and I thought they were she "laughed" and said "I did not want to move them because I thought it would hurt my back, but it doesn't." She still has some discomfort but over all doing FABULOUS!!   She no longer has a hunched back on one side. Amazing, to say the least. I am awed at the difference in her . She can sit up for 5 hours in her power chair on days she wants to. She has not totally gotten the whole concept "she can be" in her power chair every day. She went from maybe lasting 20 minutes in her chair some times to actually eating via- g-tube and sitting up for hours at a time. She is getting "braver" each day. I love it. She runs from room to room in her chair seeing what everyone is doing. I love it!!  She is still bathing in her bath chair because the bandage has not come off yet. Its okay "She is getting pretty clean!" she says. her hair is so long!! She made the statement that she feels "Older" since her surgery. LOL She looks  so much older. She is simply gorgeous!! She is my "Hero"!!

Lizzy is looking forward to the "chubby red faced"  man wearing a  red suit making finding his way here for Christmas. Hope she is not too upset she is not getting everything she wanted but..... she has an expensive list this year!! I dread the day she finds out that that "chubby faced" little man is just a "magical innocent myth of a child's belief" . I am afraid to take the magic out of her life. She is a miracle and to take that belief from her to me would be criminal in my mind. Silly, you might think but Lizzy has jumped so many hurdles in her nine years of existence I would hope that we can preserve this myth for at least a few more years. She is so "mature" for her age in many ways but I would like to keep this myth for as long as I can.

I just wish I could help her heart get over some of her disappointments she has experienced.  Lizzy,being a child of a single mother its been kind of hard to understand some of circumstances that have occurred. Constant promises that have been promised by a certain people that drop in and out of her life that are broken, just cause me so much anger. We get her through the disappointments with all the love we give her by our family. She seems to understand things we do not understand ourselves. She is such a great kid. Love her with all my heart. I tell her every night " I love her to the moon and back!" I love her more than that.

Here is some more of our heroes in the video below. Grab a box of Kleenex  Its finally here!!A way to cure babies through Gene therapy. Hoping to help the quality of life in some of the older kids. Thank you to all the Moms and Dads that went to the FDA to get the trial approved. This is history in the making . I cried like a  baby when I heard this was approved for trials to begin.
https://www.youtube.com/watch?feature=player_embedded&v=z1GKTwR2STg
Lets us not forget the older kids that inspired this trial.The babies/young children that passed from this terrible disease.  Let us not forget those of us that have fought to save these kids no matter what the medical community told us. The doctors that fought for these kids like DR.Bach, DR.Schroth, our DR. Hough and DR Wang even when they were facing a medical community that was bias and totally not willing to learn. The organizations and families that raised the money for all the research and to help us care for these kids is unbelievable. We all had a voice in these trials even if we did not go to FDA and tell our stories. Our stories are out there and have been told many times. Thank you Vinny and Catherine for your passion to pursue your belief in the gene therapy to face the FDA head on!!  I had no idea this was going on at this time but when I heard about it I was so excited.
I pray Lizzy and the older kids will be able to be a part of phase two in the trial for the gene therapy.They have inspired many with their courage, strengths,our trials and errors. Lizzy and many older kids helped so many parents have HOPE. So, much has happened since Lizzy was diagnosed. Its truly miraculous.

Prayers please for all our sick friends and those that have had surgeries! 

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

www.our-sma-angels.com/elizabeth

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 (like during Lizzy's surgery)and I can actually feel people holding hands and feel the prayers surrounding her. It is like we were led through a storm to a safe place . Thank you all that prayed for us and helped us out during these hard times. The past few years have not been easy but we have gotten through .

Spinal Fusion and Family - Living with Spinal Muscular Atrophy

This has been the most emotional last few weeks of my life besides the day Lizzy was diagnosed.

Christen, Lizzy and I came to Madison  Saturday Nov.10 evening for Lizzy to be admitted Sunday at noon for her Spinal Fusion at 7:30 am on Monday Nov.12. We spent the night before at the Ronald McDonald House.
 Home now and looking back I wonder how I got through this past week. Well, I guess I know...lots of prayers from friends, family and many myself. Believing in miracles is what its all about. Divine Intervention.

Lizzy went from a 93 degree curve to a 47 degree. Her last few growing spurts since August were a surprise to all of us. Her Curve had gotten so bad and she just started to complain about it.  The best Ortho surgeon  for SMA kids in the world is DR. Matthew Halanski ( American Family Children's Hospital in Madison,WI ), He is "Superman". What he did for Lizzy is like a miracle. She had the worse curve than any other SMA child he has ever done.
Lizzy has exceeded the all doctors' expectations. She went through a long twelve hour surgery.It was supposed to be eight hours. There was some unexpected delays in the surgery. During the surgery all of a sudden I had this weird feeling something was wrong. I blame it on intuition . Christen went back and asked the nurses and they said Lizzy was fine... still I felt something was wrong .  I asked for prayers for her from all of our friends. I was right on with feelings I was having that something was not right. Well , what we found out after that there was a problem with one of the pins on one-side of her rods. It broke. So, they had to customize her rod on one side. Her blood pressure had dropped a few times and after she was in her room recovering it was from one of anesthesia meds that was causing it to drop. I was so upset and kept on them about her very low blood pressure and after the IV with the med was stopped her blood pressure went back to normal with in seconds. She had to have 2 pints of blood also. I knew that was not right with her blood pressure dropping like it was. Then,seeing her little swollen body hurt my heart. But she quickly improved!
 The nurses and all the doctors were so good to us. Lizzy was a hit with her nurses and docs with her sassy self and her determination to get better. Love that kid!!
DR.Schroth told Lizzy she has done "Fantastic" and only explanation for her doing so well was that she was "Just Lizzy".  LOL
The top picture is the day she was extubated. Pretty amazing to say the least!!
Here she is in her power chair the day after she was extubated and the next day.

She has done so well. I do not think I could bounce back that quick. DR. H was able to get her to 47 degrees from 93 degrees because her bones were so much more better than they expected. She has been on Vit K2  extra cal citrate  and D3 for a very long time besides the donor breast milk she has been on since she was 2. It has all worked. Plus, she is alkaline in her diet also which helps keeping her bones strong. She did leave the hospital slightly anemic but DR,Schroth said I would fix that with her diet like I always do to help that better than any med could do. That was a HUGE pat on the back. Guess, I know my stuff, Huh? I guess DR.Schroth knows that too. (Chuckle to myself)
Lizzy is healing and having some discomfort but, doing well. Sitting up so well she looks like she grew 5 or more inches.
Thank you for all the balloons and ecards. She loved them!! I think she got close to 50 ecards

We went right from Madison to Dawn's house in Lexington for the night. My girls volunteered me to cook the next day.( Oh yay)  I sat on the edge of the back seat since there was no where for me to sit for 4 hours.Stopped once for pee break. At least we made it back with out any issues. Lizzy is so long she takes up the whole back seat now! We had a full van of Lizzy's stuff.
So, Thanksgiving day I started at 7:15am cooking with a huge breakfast of biscuits sausage gravy, fried potatoes and German pancakes. Then, I cooked all day for Thanksgiving dinner. I was beat by the time everyone arrived. Up all week around the clock turning Lizzy all night then coming back to cook for 34 people was not something I had planned. It was great day though besides the fact I made my first ever lumpy gravy and a tip from a friend to use a hand mixer on my lumpy gravy and it worked!!   All and all it turned out a very good day. My brother Rory and his wife Carlene had come home from Kuwait for Thanksgiving. It was friends and family. Love that we can all get together. Dawn's house is huge so we all fit!!

Lizzy below the day she left the hospital.

Great Great Grandma Janet and Rylee

The holiday season has begun.  UGH.... I love the season just do not like the fact I can not buy for the grand kids at all this year.I am baking coffee cakes for my kids and their families for the holidays. Times for us are than worst ever.  We will get through if its what is supposed to be. God has gotten us through this long. I just wish Paul's health would improve.

Keep Lizzy in your prayers to keep recovering well.
Happy Holidays!! We have so much to be Thankful for!!

Please say prayers for two SMA children who will be having surgery in the morning. Prayers for Dani and Sohum
Thank you!!


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