Illness hits again , Last day of School and Our Next Chapter - Living with Spinal Muscular Atrophy

Lizzy has had a wonderful last few weeks then with out warning another illness struck her Friday night . She complained of a sore throat . But.... she said " It only hurts just a little." Ugh... Okay, I will give her some Motrin and lets see how she is over night since she told me this at around 10pm on Friday. I watched her most of Friday night emailed DR.Schroth . Then,  about 7am Saturday morning she wakes up with higher than normal heart rate from low grade temp and snotty nose.  Waves on anxiety over come me. I can  say in my mind I  was silently FREAKING OUT!! Okay, I need to remain calm for Lizzy's sake . Yeah, like that is going to happen. I had tears running down my face.  Oh My... Not again. This can not be happening.... Okay, Lets be calm here. Think positive Jeanna you will get through this like you have gotten through so  many illnesses with her. My thoughts were running wild thinking about not been able to take care of her like last time, Is this RSV again? I hear that you can get RSV back again quickly once you get it. My gosh all I could think about was she was getting sicker. She was running a low grade temp, complained of her throat feeling worse and snotty nose. Christen called up to Madison and DR. Greene called back and assured me Lizzy was in good  hands with me and he thought possibly it was like a illness he just had that last 4 days and ordered her an antibiotic. Okay, I feel a bit better but I upped her treatments and put her on bipap Saturday morning. She woke up Sunday saying "She did not need bipap anymore . She did not want on it after her morning treatment.  She was good all day except for that running nose. Then, around 6pm she was breaking out in that rash she gets when she gets flushed and needs bipap.  Her o2 level was dropping to 96-97 O2 . Not bad but... okay this is not bad she just needs a little bipap time I keep thinking to myself,  I asked her if she needed her bipap and she said "Yes" . Okay, overacting  I was thinking the worst. Oh no, she is getting worse. Put her on bipap . Still doing the extra treatments. Well , at around 5:30 am after I finally got to bed at 3am after doing all her treatments and getting things ready for today Lizzy wakes me up just a talking up at storm. " Nina you awake ? , umm I want to watch TV, ummm can you move my elbow, umm can you move my foot. Nina Nina Nina!!"  I reply, " yes Lizzy I am  awake now thank you"  with out further a do we were up for the day I guess.: She is so much better today thank goodness. The power of prayer again. You can not get better than divine intervention. " Sigh Of relief" the illness is about over,  I hope. Thank you for the prayers. Thank you God for taking care of our Lizzy . She was in her power chair today for a few hours and doing pretty well. Why did I freak out so bad. What made me second guess myself . Is this normal?  I have to pull it together if not for myself for Lizzy. Where is that self confidence?

Friday,  Lizzy was invited to school so she could meet and  see the kids and spend a little time at the school.  for the last day. The whole school sent her get well cards when she was sick in Madison. They wanted to meet her. She was so excited. Anticipation, consumed her all day Friday, ( Actually  since Thursday and she knew she was going) until finally drove her power chair in the classroom with pride.  She brought them all cookies. She visited a few other classes too that sent her Get Well cards.

She wants to go to school full-time but because the fact parents do not keep their children home when they are sick we can not take a chance. The illness she has now I am not sure where she got it but its was not from school because she got sick with it that evening.
Lizzy had a great teacher this year that came to the house named Becky. She is a very good tutor and Lizzy responded to her so well. We lost the battle for summer school but I think this fall Lizzy will do very well with Becky again. Lizzy's first grade teacher did very well with videos for Lizzy too. A few science projects. Her first grade case manager (teacher) asked if she could have Lizzy this next fall also for 2nd grade so that is so very exciting.

We stayed home all weekend but that is okay. 

Christen went and put flowers on my grandparents graves, a special friend of my sister's that passed away in a car accident that my sister was in also, a baby's grave name Levi( that died possibly of SMA we will never know that was Lizzy's dad's sister baby an infant and died in his sleep of natural causes), the family head stone and my great grandparents graves Saturday. My grandparents and great grandparents are where we come from so we pay them respect each Memorial Day. I used to plant flowers on all their graves but the cemetery started pulling them up after memorial day. Crazy that they did this because the plants were not in the way of their mowing. Christen and Jessica like putting flowers on the graves too.  I missed going this year. Lizzy was sick so Christen offered and I let her do it.  I always think about my time when my grandparents were around and the memories they created for  me. I feel  peace when I am there because these people help make me who I am today. I spent  a lot of time with my grandparents because my mom was ill a good part of my adolescence or Mom just could not handle me she says. I took trips with my Grandma Frieda and Grandpa Russell to Missouri for the Cross Country Trail Ride (Horses) and to other places in Missouri. I loved horses and tinkering around with mechanical things as a kid.  I loved the farm. My Dad lived right next door so I was on the farm quite a lot growing up more than my two younger siblings.  I  just  got a few goose bumps that ran up my arm !! Thinking to myself what a great life those people gave me when I was with them. I miss them so much !!. My kids and grandkids would of loved them. I know they are all watching over us now. Christen finds she needs to put the flowers on Levi's grave because no one else does. No on puts flowers on the graves we do. I have been doing this for many years. Enough, thinking about that. Grave yards do not scare me . 

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Every day Lizzy asks when are we going to go visit our friends that live far away. Well, we are not going anywhere until after the middle of July but local appts. No  FSMA conference for us this year we are not able to attend this year. That is Lizzy's time to shine. That is shame Lizzy is not able to go this year. Maybe next year. No Stanford trip at all this year since DR.Wang is on sabbatical . I think we will not be going back out there to see him because we recently got a letter from Stanford saying DR. Wang is no longer at Stanford. That  is kind of is a good thing because no long trip in a van but a bad thing we will not see the wonderful people like Molly and Andy anymore. They are so much like family to us. We will not see Hayden's family anymore Jennifer and Chris. They are like family too.  We will not be staying at the motel we always stayed and visit with the ladies that run it. We will not be at Lucile Packard anymore seeing DR, Wang or the pharmacists. It has been a  big part of our life since Lizzy was almost 8 months old.  Its hurts my heart but we all must move on with our own lives. These people are all close to us and we will see them no more unless we meet some place else. They are all like family to us. We are moving on to our next chapter in our lives I guess. " Sigh" Miss them all.  Lizzy will be getting the trial med in Madison starting in July. 
Lizzy is excited about seeing our good friends in Minnesota in July! We can not wait! 

Please keep Lizzy in your prayers and our dear friend Sophia Gaynor. Sophia is in the hospital and just recently had a tracheotomy. Here is her Daddy's Blog Post http://www.sophiascure.org/blog/daddy-im-ready

Beautiful loving family and we have known them since before Sophia was diagnosed. Wish they lived closer. 

Thank you those of you that are in our life. 

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

www.our-sma-angels.com/elizabeth 

Just living life,Finding Joy and Independence - Living with Spinal Muscular Atrophy Type 1

Lizzy has been enjoying life and I have been tagging along with her. Watching this new found independence and watching her reactions have me in awe. Who would of thought one little girl can enrich my life so much.

We have had appointments like crazy and afterwards we have been taking Lizzy with her chair to the mall and stores just to look around. She loves it!! She was not in her power chair very long  the last few years  because of some issues with seating and bracing. She had been to Wal-mart once or twice in her life in her power chair but had needed to come out of her chair due to positioning issues. Now, its a different for her she is in charge of what she sees and where she wants to go while in the mall or a store. Amazing to see her like this. The comments she makes are like she is a teenager. Like , "Gross, or Truthfully, Nina its just not my style or that is babyish looking." Imagine seeing everything from a manual stroller laying flat for over 7 years. Then, you are 7 years old and 8 months old and see a totally different world just sitting up. Its like she has never seen these things before. I love it!!
No matter how much things are going on around me when Lizzy is doing well and things are great I am as happy as I can ever can be. I find so much joy in Lizzy and Corbyn these days. I love the rest of my grandkids deeply but my life is surrounded with these two and their discoveries.

 I am so glad we kept pursuing finding a wheel chair vendor that knew how to figure things out for kids like Lizzy. I just wish it would of been a few years sooner. You are used to the vendors you have had for a longtime and want to give them every opportunity to accommodate your needs with their professional expertise. When they do not accomplish that you have to find some one that will. We had this equipment vendor we have now for a very short time before for a kid kart  for Lizzy and switched to another because we were told he did not deal with the power chair Lizzy's needed. Yes, he did and does. Live and Learn!! He was great figuring out just what she needed!!

Lizzy is about done with school and she is not likening the fact she will be done for a few months. We could not prove Lizzy was cognitive delayed enough to have her in summer school. She is a pretty smart kid.  Its summer so we have a few things planned but until we get the van fixed we will not going too far away. Broken belt in the tire, DVD quit working and a noise in the front Never ending list of things since the van hit 100,000 miles awhile back.  Having Lizzy chair in the van also there is no room with all we have to take with us to travel but we will live with it. We can not get a different van because Paul has still not gotten a job but he just completed a college computer course and math fresh up through Job Service so lets hope his newly acquired skills help his chances of getting a job SOON!!  We are living with in our means but with no income on his part and just mine the future for us looks petrifying to say the least!! It will work out I have faith.

We have less drama here since Lizzy's dad is not around so much.  Christen is treating me a bit better but there are days..... ahhhhhh where we still bump heads. Life's too short to argue... Not good for Lizzy either. Christen needs to learn how to respect me as a mother not as a friend or sister. I am Mom and I deserve respect. As, I said she is getting a bit better.

 Since, RSV I am pleased to say Lizzy is better than before. She is doing great in swim therapy. Her back is improving so much . Her strength is amazing. She is filling out and not so tiny anymore as she has been since she was an infant. She is such a beautiful child. She loves life and is exploring her new world of being mobile again.

Thank you to all of you that are in our life that share the same joys as us. Having a child like Lizzy in your life makes you stop, take in a deep breath, enjoy happiness and all life's wonders. We are all connected and to find peace and happiness in our world we have a achieved one of life's greatest gifts. Whatever method you use to define happiness the Dalai Lami says "That happiness is a state of mind more than a reflection of circumstances."
Live life one day at a time is the way I have learned to live.


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

Another Angel Earns her Wings- Living With Spinal Muscular Atrophy

Its was a sad Mother's day as we found out we lost another child to SMA. We did not know this family in person but knew about them though posts, emails pictures and friends. Wonderful family and Sydney was so full of life. I am beside myself trying to get over this passing as I was torn after we lost Pranav recently. I keep asking myself why does this happen to families that have worked so hard to keep their children alive? This little girl was not much younger than Lizzy. She was a beauty and full of mischief I hear when her and he buddy Charlie would get together.  My heart is broken and I have not been able to sleep the last few nights thinking about this. Please keep this family in your prayers.
Here is the write up on her web-site that I borrowed to share.

Sydney Grace Potjer, age 6, our precious gift from God, is now in the arms of Jesus.  October 18, 2004 - Sunday, May 8, 2011.  Sydney was preceded in death by her grandma, Linda Potjer.  

She will be forever missed by her parents, Tim and Kami (Burgess) Potjer; her grandparents, Harold and Norine Burgess, John and Pat Potjer, Ron and Cindy Lemcool; her aunts and uncles, Barry (Jeannie) Burgess, Bonnie (Bob) Rozema, Karynn Sikkema, Bruce (Judy) Burgess, Kristi (Steve) Oostdyk, Karmi (Jim) Middlemiss, Julie (Jim) McLeod, Laura (Jeff) Reminga; her best friend and puppy, Fluffy; her many close cousins, loving relatives and dear friends.  

A time for relatives and friends to visit with Sydney’s family will be held from 2 to 4 and 7 to 9 PM Thursday at Cook Funeral Home in Byron Center, 2067 – 84th St. SW.  Funeral services will be held 1 PM Friday at the Reformed Church of Corinth, 129 100th St. SE.  Rev. Don Porter and Rev. Warren Burgess will officiate.  Interment will be at Winchester Cemetery.  In honor of Sydney, contributions may be made to Byron Center Christian School or The 200 c/o Sophia’s Cure Foundation, dedicated to finding a cure for Spinal Muscular Atrophy.  The family welcomes memories and messages in their guestbook online at 
http://cookfamilycares.com/#/obituary/886967. 


Fly high sweet little one, fly free of SMA. 

What a quarter will actually buy, a special mom, never giving up and hope - Living with Spinal Muscular Atrophy

Lizzy is doing pretty good. We had another busy week. Lizzy's back is doing much better this week. She loved swim therapy on Thursday. Seeing her in the water again and moving like she does warms my heart. Her new swim goggles need some anti fog on them!! LOL as you can see in the picture above.

We did hit some of  the Route 66 garage sales on Friday with Jessica. Spent a few dollars but not a lot. I got Lizzy this beautiful wooden music box for 50 cents that sings "Its a small world" with elves on it( pictured above) . Too cute Looks brand new also. I got Paul some brand new Docker Shorts for 25 cents a pair.I got  him 5 pair Yeah, 25 cents a pair brand new. Got a few things and it was nice to get out. Its was a beautiful day.

Lizzy gets her new seating on Monday. Her joystick post was busted last night. The last one we had. Paul was trying to charge the batteries since the chair was completely dead and would not charge. She was just in it so not sure why that happened. He had to take the chair a part. He was not having much luck. I think he needs new glasses he is not seeing too well these days. I think he is letting his eyes go. Time to demand he go to get new glasses.

A few days before Mother's day in 2004 Lizzy was diagnosed. That was seven years ago. What we know know compared to what we knew then is totally amazing. The way I thought, the person I was..... I am a totally different person. The fact was though I was not giving up on Lizzy I would fight to help her with my  last dying breath I pledged to myself and her. We were told she would not make it to year old let alone two years old . Well, I am here to tell you my girl is 7years 7 months 8 days old and a beautiful, smart , sensitive, courageous and wonderful little girl. She is my heart and my strength.
Keeping a positive attitude it makes life easier. Never Give up HOPE!!

 " With ordinary talent and extraordinary perseverance, all things are attainable. "
Thomas Foxwell Buxton

Happy Mother Day to all you great Moms and Grandmothers out there.

I have been forgetting some of my advice I promised.

Swim therapy for a child with SMA is one of the best therapies for child/adults with SMA. Lizzy goes through Easter Seals.

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


I had to share this again this year.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
“Armstrong, Beth, son. Patron Saint, Matthew.”
“Forrest, Marjorie, daughter. Patron Saint, Celia.”
“Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”
Finally he passes a name to an angel and smiles. “Give her a handicapped child.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a handicapped child a mother who knows no laughter?
That would be cruel.”
“But does she have the patience?” asks the angel.
“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she’ll handle it.”
“I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I’m going to give her has a world of it’s own.
She has to make it live in her world, and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you.”
God smiles. “No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn’t know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see–ignorance, cruelty,
prejudice–and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side.”
“And what about her Patron Saint?” asks the angel, his pen poised in the air. God smiles.
“A mirror will suffice.”

A lot to talk about- Living with Spinal Muscular Atrophy

 So, much has been going on. Sunday Night we heard the news about the man that killed so many world wide was captured and removed from this earth. That took about a 30 minute explanation to Lizzy on how he was not a good person and before she was born he killed many Americans by having his people blow up planes because he did not like America. I explained how President Obama made it just a bit safer for us just with us knowing that this terrible man was gone. I was at the doctors office on 9-11 and watched it on the TV. I felt violated that is  the only way I can explain it and DEEP sadness for the families that lost their lives over these terrorists terrible deeds that changed our lives forever.

The Royal wedding was also what Elizabeth and I watched. Friday morning the second time around on TLC. She watched in amazement and asked all sorts of questions there also. It was a wedding to remember and one many can just dream about.

Lizzy's good friend Ben( pictured above) ran a marathon and donated the money in Lizzy's honor to Center for Courageous Kids . How honored we felt. Lizzy's reply when I told her was that of a normal 7 year old. The letters "OMG!" she said and I just love him!!" He is a very special guy Lizzy met as a counselor at CCK a few years ago. I am thinking this was her very first crush. He is becoming a doctor. Lizzy was not able to go to CCK this year because we were not going to able to go and then she was in the hospital when the SMA weekend was. We really missed going.
Lizzy is getting so much better. She is still getting plugs up EVERY day but everyday she is that much more better. I just wish the plugs would stop.

The myfasicial release is working well. Lizzy's ribs are going back slowly. After the hospital stay we were concerned. I am doing it every day as before and we are seeing Linda once a week again to get her back where it needs to be. We understand she will need spinal surgery  but her ribs are our concern. Getting her ribs back while she is still flexible is our main goal at this point. Three professional told us that surgery right now not help her ribs and its smarter to get those ribs back before she decide to do the surgery. Those ribs will go back into place it will be much easier for her to sit. If she does surgery now her ribs will not improve only her spine. Its from not proper bracing the last few times. Which is no ones fault. Its just because no one knew here about SMA and to lay her down and then and then sit them up to get a proper correction to her ribs. So, Lizzy's new TLSO is done and we pick it up on Thursday and she gets her NEW Chair seating on Monday!!


I see my mother quite often these days. I think I see her more since she has been in the nursing home. 


I have not had much time to be online or to talk on the phone. I am just so busy all the time. Lizzy's appts, daily things here helping Lizzy with home work and I have also been making bows for our beautician to sell at her salon 
for Lizzy's medical/need fund.  Keeping a constant flow in her account helps with her MF release. 


Keep us in our prayers. Paul still can not find a job. Anyone that needs a HVAC tech email me!! He is great worker. He has been mowing lawns and doing some outdoor work to help with bills.
We made it through another month and with help from some of our good friends helping us with the hospital stay. It gives me a warm feeling knowing that we have friends care that much about us. 


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