Living with Spinal Muscular Atrophy - Emotional Roller-coasters

On Tuesday, of this week our car was burglarized. My husband had just put new brakes on the car and left his check book in there because he had been at Auto Zone.  Well, they found his check book and his UAW union calendar in one of the suspects possession. Thank goodness that they caught the trio right after they got our car. We were on lucky. They are blamed for several break ins here.  The police were called after some one caught them trying to get in our vehicles. We had not a clue until the police knock at the door we had even been robbed. It gave me sick feeling like we had been violated. They tried to break in the van but thank goodness it is kept locked.

Last week, was a very emotional week. I was doubting myself and a feeling a feeling of complete helplessness. I cried for two days. To put Elizabeth though a huge surgery like spinal  rod surgery, then lengthening every 6-9 months is something we have to  as a family agree on.. If she was having pain or breathing issues there would be no doubt she would get it done as soon as possible.
 As soon as we got home from Madison last week I started researching and talking to others.  Imagine that me researching and talking on the phone.... Well, Christen and I have been using MF therapy TOGETHER on Elizabeth since last Thursday.  Me getting help.... ( The crowd roars) I do not get help with Elizabeth's treatments  EVER till now. At least with stretching. The truth is Elizabeth and I spend a lot of time at home alone together. Any way Lizzy's MF PT Linda and her PT at Easter Seals Jayme both said Elizabeth is straighter now than she has been ever this week. Whoo hoo. Positioning her in the van I have to admit has been quite a challenge. She lays with the Easy on vest on the back seat. The seat has a slight angle in the back. I put pillows under her head and on her back but you can tell my how tight its not good for her to do that. We need a small manual lift plain and simple to fit the Dodge Caravan since we were not able to get a handicapped van. This is so Lizzy can sit in her power chair while traveling and give her better support. Her chair reclines so it should not be an issue. Any way we are trying to figure out  how to get a manual lift that will fit.We have a few things in the works. I hope somethings works out.

A very good  friend of mine sent me a neoprene wrap for Lizzy also that keeps her from slouching. It is great and Lizzy loves it. She says it helps her back. She never complained about her back unless she was in her  power chair. Since, I redid her seating and Christen redid her head on her chair she is sitting much straighter in her chair. She still needs a brand new seat and we are getting a new seat HOPEFULLY very soon.
We are trying some alternative things to help her for a while then we are going back and getting more X-rays. We understand she may still need this surgery but for her being so flexible right now that is to our advantage. I am not defining DR.Schroth's suggestions we are simply putting her suggestions on HOLD for now and getting a second opinion. Nothing wrong with that. If her breathing was in any way affected from her back then we would do it immediately. She is in no pain either.

Very emotional day here today. Paul and had HUGE words over bills. He was just cut the little bit of gas money for school(grant) he was getting. I help out with groceries and Lizzy' supplements. ALL I asked for bill money and oh my gosh you would of think I has asked for a million dollars.   I did not know what happened when I asked him for money to pay the utilities.When is our financial status going to get better?  We need some divine intervention to help us get through this bad time. Its ruining our relationship of 35 years of marriage going through this . All I asked from him after the blow up was an apology and never got it.  Him and I used to get along great but these last few months it has been little or no words between us. Just a lot of stress. A lot of our issues are brought on from Paul not helping around here with handyman things, not taking Lizzy outside ,money is a huge part and Lizzy's dad trying to cause issues between us. . No matter how hard I try Lizzy's dad and I can not get along. More issues with that situation than any one knows. Seems like 3 steps forward and 4 steps back.


Closing on a good thing.  Lizzy is doing great!! Her hips and back are straighter!! She has had a pretty good summer.  Summer soon will be coming to an end. I love fall but I do not like the illnesses that come with it.

Reed Michael has his first leave and with his Mom, Dad and siblings in Kentucky. He asked me for one of my swedish T-rings for his birthday. I made him 2 . He is pretty special for me to make home made coffee cakes in August!!

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

Living with SMA - The dreaded first Spinal surgery is upon us

We are in Madison. It was a good day up until the last visitor to our room.We had seen all the people we needed to see for muscle clinic but this last one. The anticipation for this visitor makes you slightly temporally crazy just the waiting . This person  is feared about as bad as the Grim Reaper to me. We have been good until now. Fighting against the inevitable, the dreaded spinal rod surgery. Those words make be cringe.I feel as though I was just stabbed in the heart and punched in the gut. Tears have been flowing down my face since the news from this surgeons asst this afternoon. I laid down with Lizzy a few hours ago and I just held her and silently cried while praying for another miracle to happen to my girl fast. I know........ get over it but  you know I have worked so hard to keep Lizzy's back straight and keep her strong. This last huge growth spurt of hers caused this.

Any surgery is huge with kids with Type 1 then now facing the surgery a few months away I feel so darn helpless not being able to do anything to help her from getting this surgery.

Elizabeth said tonight to me." I am not getting surgery I am okay ..... just tell them to stop saying it. I am not because I am not doing it. " My heart just hurts for her. I just wish I could stop crying non stop.

Please put Lizzy in your prayers! 

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

Living with Spinal Muscular Atrophy- DEEP DARK HOLES

I hope you did not read my last post. I was kind of negative and DELETED it. Some-times you have to just vent and vent away I did. Forgive me as I was in that "DEEP Dark hole " kind of attitude and it hit me all at once. I preach against this kind of attitude. I am glad I was not around Elizabeth today when I was this upset.

I do though see the need for me being with her 24/7 as today her food ran out food during her feeding and  the pump did not beep and she was not a happy camper when I took back over. She said "Nina where did you go? I needed you."  She was down stairs with her Mom and Dad. Did they see her pump run out. Nope they did not.  They do not give her the care I do.  I felt so bad.  I was just so tired of the BS, They can run off as they please and leave me home alone all day into the evening. A person needs to have alone time every day to keep the sanity intact.
I am fine now. I prayed for " Divine Intervention" and I got it!!
Lizzy is my light and pulled me right back up
August is SMA Awareness Month

                            
                                   Lizzy praying for the babies and children that lost their lives with SMA.

Help raise awareness for Spinal Muscular Atrophy & to honor & remember So Many Angels. On Wednesday 8-11-10, 8:30 PM, at the Dublin Miracle League Field/Playground the 
Mayor of Dublin will proclaim August SMA Awareness Month. We will have a
balloon release and candlelighting... -if you can't make it please light a candle, say a prayer or release a balloon where ever you are!


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

Living with Spinal Muscular Atrophy - "Taking a deep breath and saying Oh yeah"

Congratulations to Sophia's Cure!!!  They were 1st in the Pepsi Challenge!!  Actually. its a great thing for Miracle for Madison  too as awesome as the Reed Family is!! They have funded the research at OSU for many years( from the start) and now this extra money will help them move forward even faster!! .I feel  great things happening in the SMA World this year!!!  Dr. Brian Kaspar, Dr. Arthur Burghes, and Dr. John Kissel are doing so much to help our kids. They are so close and have accomplished so much!! 
Vince and Catherine are such great people. I admire them for their diligence and undying effort to help so many kids! Whooooooo Hoooooooo  !!!!!
Thank you all that voted for them!! ` You helped the future of babies, children and adults with SMA!!

Its been a busy summer for us. So much going on. We have hardly been home. Its good to be taking a breather right now.

Caitlyn had her party a bit late this year. She had it yesterday. She had her friends come after the family gathering for a cookout and camped out . She had 5 girls come stay. What a dream to have a home on the lake with 100s of acres of timber then not too far from the house timber and a clearing to camp at. How fun is that for a child to live at.
Lizzy got very upset when we were leaving. She wanted to stay and she had tears rolling down her face because she wanted to stay in the tents too all night long. "Sigh" My heart ached for Lizzy. I myself had tears after that. So, trying to be as positive I could I said " Lizzy its too hot this time of year and we do not have your bipap  here so how about if we plane an over-night stay in the tents around your birthday? We came home and I held her for awhile. Then,  we played webkinz and just had " Nina and Lizzy" time. I have never gotten so emotional over something like this ever. My heart hurt for her but... she is a beautiful child with she has more strength than any other person I know. She is my hero and my heart. I told her just that.

We just got back from a fabulous visit with friends in Minnesota on Wed evening. Caitlyn went with us and she was a great kid the whole time.  It was better visit than you can imagine. Lizzy loves Drew,Ryan and Karlie too.  Just hanging out with another family that we have grown close to. We even got to see Andrea Doebbert and the girls also. Evie is so adorable.
We ate at the American Girl Store.  A dream come true!!  Lizzy had tears in her eyes driving away. Its sad we do not live closer.We need to do this more often!!
 I wish our house was handicapped accessible!! We would have people come stay here!! As, it is  now its dated, not easily maneuvered in a power chair and needs lots of work.

Lizzy is ready to pack up and go back to Minnesota. It was a much needed time away from home with another family. Caitlyn wants to go back but was afraid her family missed her too much but Dawn said last night she could go back.  This is what friendship is all about. Their house was perfect for Drew and the whole family.

We have decided to have a benefit for Elizabeth to raise funds for a Ford E150 van. It was perfect the one we rented for CA. The size was enough room for all Lizzy's machines, The portable ramp fit in it and does not fit in our caravan. Its is great on gas, the seating is  so comfortable . I could on and on. We can not get a loan right now because of Paul's unemployment, schooling and our low income. We have to do something. Lizzy is very uncomfortable in our van as of now. So,  a few friends of Christen' and Dawn are planning hopefully a benefit soon. We shall see. Buying this kind of van it would be so much cheaper than the conversion. You can buy a 2009 for about $17,000.00 but the 2005 conversion we were trying so hard to get was $33.000.00 with 40,000 miles . Which would make more sense? We have a manual lift that fits great in the E150 ( The lift will not fit in the van we have now) Then, later we can get the conversion with a raised roof but we do not need that for awhile.We have to do something quick though. Lizzy's back and hurting her because she is laying on the seat in the van( with her EZ on vest and its not working anymore. She needs MORE room!! I need more room!!

Elizabeth's seating system for her power chair just does not work for any more. Its too small. She is 13 inches too tall for it.   Elizabeth struggles trying to stay in it as long as she can. She went from every day in it to not much at all. It causes her pain and she pivots so badly.  She said it hurts her back and sides. We have changed DMEs for her chair. The guys that worked on her chair are charming enough but getting approvals to even have them look at the chair takes months. It is absolutely ridiculous. We have to travel 90 miles also to get it fixed or looked at. So, after deep consideration , looking at the pros and cons we have made the first step towards working with a guy we knew before . He had gotten Elizabeth kid kart from in the beginning and has worked with Easter Seals. We went with the MDA 's DME when we got her chair. BIG MISTAKE. Huge.. There have been a few times things have worked out but seriously now we are dealing with "Quality of life" issues now. To keep putting us off is WRONG. So, having given them several chances to treat Elizabeth like she should be treated they are now HISTORY.   I think they will be happy we are not a burden to them any longer.  You can only take so much you know and we have endured enough disappointments the past almost 4 years.

Oh, we have had a dandy time this summer so far. Its getting close to ending and went by way to fast.
Seeing kids from all over the country. Its amazing how different the care is. I myself think that doctors in the west need to research more on care of the SMA. DR. Wang understands yes and some of the doctors but many of the medical profession is  against some of the interventions we have learned that works.  Some-thing in wrong that we all do not care for the same disease the same way. Nutritionists out there seemed to be totally against the AA diet. Makes no sense at all .

I would love to win the Lotto ( I know wouldnt we all) and plan a Expo with all the PTS. RTS  OT , speech therapists tech people. wheel chair companies. equipment companies, dietitians, doctors, researchers , van dealers, architects, builders. Foundations that help with things for our kids and just all sorts of things that we can get to help these kids for quality of living. That all  know about type1s.
That is a dream of mine. I lay awake at night and think of things I would have. I would pay for all meals and motel costs and all everyone would have to do is pay for gas or plane trip to get there. Imagine all these people at the same place for 3-4 days. I would call it " The Excellent Elizabeth Expo"!!  I know I am a bit a "dreamer" maybe some day.

Lizzy is doing well and growing fast. She is just so beautiful.

Thank you for all the people that are in our life and shown us so much love!!
Many prayers for Sophia G, MJ, Mary, and all the kids having issues.

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

Living with Spinal Muscular Atrophy- Doing the Happy Dance

We get a  motor for the van !! It was approved from the Warranty company!!  Oh yeah!! Finally the news arrived this afternoon!! They said we should have our van back by Monday!! whooooo hoooooo yeeeeeah!!
That is some great news. We are doing the happy dance here. Thank you for the prayers!! They worked!!

We had a meeting with the people in charge of Lizzy's waiver program today. Kathy and Alica. They were very excited to see her and we talked about the CA trip and all we did among other things. How Lizzy went to a tea party that her friend Veronica had at the conference, how she made bears, went to a carnival, how much she loved seeing her friends and what a great time we had. Also, how Rachael was mean to her by pushing on her blood test mark. How she wanted to leave Rachael at a gas station on the way home.
Then, Lizzy told them where the conference will be next year and how she just had to go. She is so funny. Then we talked about school and how Lizzy was going to have teacher come to our house this year, thinking about a mattress that will turn her at night, getting a new seat or a new power chair which ever would be the smartest to do. It was a great visit today. We also talked about finding someone to help finish the uncompleted projects at the house. LOL They laughed at that one..... I guess its MOST men that have great intentions but do not follow through!!
Lizzy went and saw Linda tonight for her MFR therapy. So. she went to sleep VERY early tonight. We have swim therapy on Thursday.

We are supposed to go visit our friends in Minnesota next week. It looks like we are going hopefully!!
 Its been a busy summer.
Many prayers to our friends in need of prayers!!

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

Living with Spinal Muscular Atrophy - Still waiting, Hot Here and Just Getting Caught up

Picture above is my girls and their Paternal Grandmother Barb July 3 at the family reunion in Fairbury,IL for the Saathoff side.


Its has been so hot here this past week.  The humidity has been unbearable.

I have been thinking about the past six years. Wow, its been a whole change of life style. Learning what is close to my heart. Our first time flying on a plane was the trip Christen , Elizabeth and I to CA in June 2004. Never in my life had a had enough guts to fly until Elizabeth needed us to do so to find ways to help her. It was shortly after her diagnosis we found ourselves on a plane going to one of the top hospitals in the country to save our girl. Here we were clueless on what to expect. The first for a lot of things for us. Meeting DR.Wang and the staff and staying in California for the firt two weeks at the Ronald McDonald house seems like forever ago. DR. Wang help us so much!! He gave us hope when we had lost all hope.
Then,  in July we were in Madison.WI meeting with one of the top SMA doctors in the world DR.Mary Schroth. She helped save Elizabeth's life. Getting Lizzy on the NIV protocol then learning what we know today and practice as daily treatments every day. I remember how hard it was putting on the bipap mask. I remember how we could not get machines and had borrowed ones from two organizations. G-tube /nissen surgery, SUCTION.... Never knowing if Elizabeth would make it to the next day.  Well. here we are at Lizzy almost 7 years old and she is doing well!! I feel comfortable talking to so many parents. doctor, medical personnel and all I want to do is help so many people NOT go through what we did and help make their lives easier than ours was. If I can help just one family save their child my life like I have Lizzy's that would make me feel like I did something great.  Thank you God for saving my girl, keeping her healthy , making her who she is and changing my life. Thank you God for helping me getting to this point in my life. Thank you for all the special people you brought in my life.

Now, I can tell about this week.
Well ,we had all the oil changes receipts for the van and we had to wait for the Warranty company to show up. It took them till Thursday to show up. Well, they did and said everything was in order but... they were  coming back the next day to check the oil pan.  They NEVER showed up on Friday . So, I called and FINALLY got  a loaner. Its not the best vehicle but its a loaner. I don't think we will take it too far.Its a 136,000 miles on it and a Dodge Caravan and a 2000.
We pray they will  pay for the engine. We plan on keeping the the van now and not trading it in but.... we need a bigger van to be able to take Lizzy's power chair and her manual chair .  Lizzy uses the whole back seat to ride in the van of ours. Hoping to do a benefit in the near future to be able to get just a regular van. Paul and my credit was not approved because we do not have enough income between the two of us right now.That was a hit below the belt but its our reality. Paul graduates in October.Hope he gets a good job fast!!
We need to get this house accessible for Lizzy. I am having a bit trouble carrying Lizzy up and down stairs lately because she is getting so big This house is in need of a total update. I still have wall paper on my walls in some rooms!! I have not updated this house since the 1990s but we did paint the living room, some tile in the kitchen and our down stairs bathroom was updated last fall. . Paul finally fixed the hole in the ceiling from the plumbing problem last week and I have kitchen cupboards sitting in my dining room still waiting for the kitchen to be finished. I have new carpet all rolled up in there also and waiting to be put down. All great ideas but getting someone HERE to help is like pulling teeth. Paul gives a 1000s excuses WHY he can not........ grrrrr I wish I could do things like I used too. He also says we have no money to finish. What-ever......
Enough complaining. You know it took awhile to get my focus from just Elizabeth. That is why everything was put on hold. Now.... I am not able to do all I used to do.
Fifty-two used to seem so old to me. I do not feel old just a but rusty....I will be fifty-two in nine days. Caitlyn Grace and I share birthday.

Many prayers to the families that lost a child this week. Many prayers to all the families dealing with illnesses and many prayers to all the families living with SMA.

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

Living with SMA - Home finally

We rented a van for our CA trip.  Thank goodness we did since our van blew up a week ago here at home on Paul a week after we left. We would of been broken down on the road. I was against renting a van but I am glad that is the route we took. Somebody up there watches over us.

The long drive to CA and home was not as treacherous as last year. Is was not too bad.

Thank you for the two organizations that helped us get there!!! We could of not gotten there with out your help!!

Windy in Nevada and Nebraska but Christen did great driving that huge van.
Lizzy had no issues what so ever on the road.  Rachael did pretty good until about 8pm every night. Then, she would get cranky. Lizzy did really well on the road and the whole trip. it was a fun trip for all of us and a much needed get away.

DR.Wang's visit was great. He is always so impressed with Lizzy.
We got Lizzy a rolling book bag at the gift shop because of she bad time with the blood draw. Big Ol purple bruise she got during the blood draw.Where is our Noni when we need her? The (Neonatal Nurse from UW that gets aperfect stick every time)

We spent time with Andy and Molly and it was was great time just chatting to them and being around them. Excellent time. They treat us like family.

The FSMA  conference was amazing. Thank you FSMA for allowing us to attend.  We had  rooms on the first floor. Right around the corner from the front desk. It was great.
So, many people were so excited to meet Lizzy. We met families we have all met online and many new ones. Elizabeth felt like a celebrity  Many people stopped her and was talked to her. Even researchers from out of the country talked to Christen about Elizabeth. They were shocked on how well she manages her power chair.
Its is shocking the care of SMA Type 1s is so different.

DR. Wang's luncheon was great. I was VERY nervous because of an incident that happened with in seconds of the luncheon and my focus was not there.  It was so hard to speak with shaking the way I was. I wanted to say what "HEROs "these kids are for going through the studies and staying in the studies among other things. SMA has come a long way since 2004 when Elizabeth was diagnosed in the Midwest.  DR.Wang is very proud of Elizabeth and told everyone there at the luncheon how much he is. He mentioned how we always made it to see him some how even if we have to drive.  Thank you Hope and Light Foundation for the luncheon. It was very good. Thank you for helping fund his study also.

I am excited the UW dietitians Mary and Erin were at the conference!! It was great talking to them and seeing them.
It was great seeing Colleen , Mary B( Jenna's Mom) and many others.

Its was great to see Hayden, Veronica, Jacob,Roman and their families. All the kids it was great to see
It was great to talk to others from other countries and share what we do for Lizzy.
Elizabeth did not want to leave!!!  She wants to move there. She says it every time there is a conference.
The weather was Perfect.

We got home  last Thursday about 9pm. The reality about our van has set in. Its just so upsetting. We thought the warranty was going to work by because we can not find all the receipts for the oil changes it sounds like we will have to pay for a new one out of pocket. We were trying to get a new( used van ) and that fell through right before we left and have not heard a thing since.  Mine and Paul's income will not allow a loan at this time.  So, I guess we are GROUNDED. Elizabeth is so upset!! No van ....we can not go any where . I am afraid we will be kicked out of swim therapy and speech if we miss anymore sessions. I understand why Lizzy is so upset.
Now we get the figure out how to get a van. I don't think we need a handicapped one. A Ford E150 worked well on our trip to CA. We have a manual ramp that will not work in the Dodge Caravan.  Maybe we might win the lotto? I have no clue what we are going to do.  Pray for us to find a way. We travel so much for Lizzy's medical needs.

On a good note it sounds like the Gene therapy is going to help these kids( OSU).  Then, the kids on the Hydroxeurya have a 250% more chance of survival then kids that are not( From DR. Wang Study). Its seems to help Type 1s so much.
VPA and PBA were unfounded.

Many more pics I will put on my face book!!

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