Living with Spinal Muscular Atrophy in a world with Covid-19

Lizzy and Kolton got a new puppy to deal with home-lock down that is in place.
I know I have NEVER been so scared in my life as I am these last few weeks! Covid-19 is killing healthy people! Lizzy and I have not left the house because of the flu every where since after Christmas. She has missed 3 appts for her Spinraza injections.
 It scares me so much with Lizzy let alone my husband has COPD , diabetes and 65 I have made sure we are prepared for not getting out for weeks. .I have frozen leftovers made eggs for dinner and really just making sure we have enough to get through 3 weeks. .
I have tried to keep stocked up on groceries and our needs. I pray for our nation and our world.

I lost my Uncle last week from Colorado from heart issues and my Aunt can not have a funeral till this summer and  she had to cremate him. How sad..... My heart goes out to her and my cousins.

We need to unite as American as humans and spread positive words on social media. Spread love and Hope!
We put hearts on doors to help others believe in Hope and Love!. My grand-daughter Caitlyn is supposed to graduate. No Prom.... Send her prayers and positive energy! Think about the elderly! Some people lost their jobs!  Call them. Reach out by calls or video chats!  People like us that are too much as risk to get groceries call and ask them if they need anything.  We are okay but, others like us may not be.!  Spread HOPE, LOVE and CARING!!

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

Dosing 3 Spinraza - Anxiety with Living with SMA Type1

Just an update on Lizzy and issues we were dealing with.

Just want to step back a bit and discuss the last several months. Lizzy has had issues where just walking out of the room she has to have coughs before I walk out to even go into the other room for a second. She has been using getting coughs as a way to calm herself down. Its gotten so bad where her and I barely leave the house. Its been all summer and most of last summer.

We knew Lizzy had some Anxiety issues but, not to the point of it causing her blood pressure to get high. She would break out in patches several times a day right before the anxiety hits. We tried to get her on something to help that was non addictive. The local NP put her on a med that is for allergies but would calm her down a little. but its effects had warn off.  I tried Calm-EZ all natural for years but its effect did not work anymore either. It has made life hard for her and us. My health is not the best right now because, her and I do not leave the house very much blaming it on allergies for her. NOPE..... its anxiety. I feel so bad she has been having these issues and her quality of living had gotten worse by this not being addressed. We did not know how really bad it was.

The good news is that she is on a very light anxiety med and small dose blood pressure pill. She was given the meds yesterday. Going home from Madison this time was the best in two years. No coughs she was calm. Usually, we would have to take both cough machines with us because I would have to cough her almost the whole trip. Not  yesterday! We had Lizzy back!! She was sucking on  prime stick beef jerky flipping it with her tongue. No Anxiety!! She was laughing at her brother and making jokes again. We were so happy! That is 3 1/2 hour trip and NO COUGHS and barely any suction. It was so great!! Anxiety in kids needs to be addressed! She told us that the reason she wanted coughs all the time is because, she felt her throat close up and thought the cough would help. It breaks my heart she had to suffer this long with this issue. No one should have to go through these issues. I sat and cried my eyes out last night over this had how this has affected her life. Not even the health caregivers were concerned about this issue.

Her Blood work was perfect, her diet was perfect, her Echo was normal and her kidneys normal from scans on her kidneys.  We spent two full days at Madison having injection done , testing and clinic visits. Very long days.... and very stressful not knowing what was going on!
Spinraza is making her so much stronger and causing contractures too!

I just want others to know Anxiety can cause other medical issues if not addressed. Strokes, heart attacks etc.  Do not feel bad if you or your child has it ! Just get diagnosed and treated.Some parents think these anxiety issues are ANS related issues but, Lizzy never has had an "ANS Storm" .Not that others do NOT have "ANS Storms" I am not saying that by no means.
Lizzy has now for two days only had coughs during her treatments and very little suction. Life is good!!

Lizzy's quality of life improved 100% in one day with the new meds. I do believe in miracles because, I live with one!

Blogging two days in a row! -Living with Spinal Muscular Atrophy Type 1

Look at me... whoo hoo two days in a row!
Its been raining off and on all week. We are in process of fixing out chimney and roof. Well, got the chimney about done but, with the rain I had severe leaking in my ceiling in my bedroom. Woke up to the sound of drip, drip and drip. Sounded like war drums!! . Me, over reacting as usual and thinking the worst, Lizzy and I were up at 4 am had to move into another room fast. I was afraid of her machines. I now have a ceiling to replace since its leaking . Lizzy and I have moved into another bedroom. It will work out but,will take time to get it done. Our room was the last room redone in our house. Now,trying to afford this and the roof and chimney costs oh my.  I am getting ready to move us down stairs in our dining room ( I have french doors) . So, Christen and I tried moving my queen size bed downstairs today. What a show that was. Two motivated determined women with a box springs stuck in curve the stairway. needless to say I did not work. To make it worse I had to pee! ugh....  Much easier with the California king size I had. That was two twin box springs and one huge mattress. So, I think I am going to try to find me another bed.
 Summer has been good but, as usual I have no time. Always, watching kids. Having 4 grand kids in a short time after thinking your kids were done having kids a few years back changes everything. My second daughter on baby#4 needs help a lot. Being a close family as we are I always say yes to helping out. Lizzy throws a major "Hissy Fit" with all the kids around. She loves watching them but if they start bothering her she gets so mad!  Oh..... just love teenagers and their attitudes.  I will be 60 years old this year! I think of my mom and dad being 60 when they were alive not me. I look in the mirror and I keep saying gesh I am looking more like my mom every day... I am heavier than I ever have been too. The internet research blames it on hormones. I blame it on not being active and holding babies for two years!  LOL  My knees are getting bad!
Enough of me.
Lizzy is doing well. She is getting to be so much an adult. I did not think we would make it this far 14 years ago. She has proved them all wrong and has done so well. She refuses to take the Spinraza. The drug that so many kids are using to help. Its cured some babies and made them stronger. She has face book and sees what other have said about side effects. Her anxiety about trying the injections is really bad. She has to rely on others to move her and take care of her so, she is in charge of her body and if she does not want to do something then that is her choice.
Just a short update but, I had a little time.
Pray for our country!
Enjoy the summer! 

Update and Rare Disease Day February 29, 2016 / Living with Spinal Muscular Atrophy Type 1

Many times common symptoms hide underlying rare diseases, leading to misdiagnosis and improper treatment at a later stage

Almost half of rare diseases do not have a specific foundation funding or advocating for the disease.

Spreading awareness about rare diseases can help contribute to increased public knowledge, support for clinical trials and scientific research, and development of new diagnostic and treatment procedures.

80% of rare diseases have genetic origins

Rare diseases case 35% of deaths in the first year of life in infants

Those fighting rare diseases also face high cost of healthcare that requires visits to specialists and uncommon procedures that are not always covered by insurance.

95% of rare diseases have NO FDA approved drug treatment
Half of people diagnosed with rare diseases are children. 


Long over-due update -

Sorry, Its been so very long!!
Its been some rough times and been some great times this past year.
We have had some miracles and we have had some disappointments.
We have lost a great friend named Bernie that broke our hearts.
We had three births last year, Lizzy had a new baby brother and a new cousin born 6 days later.
We had a terrible flood in December and my son in law and his best friend almost lost theirlives trying to get my daughter Dawn and her family out of their flooded home after the levy broke on lake they live,
My dad had been very ill and a terrible time at one nursing home and got him into another.

Makes you wonder how we got through it all. The answer... faith and the love of family.

Just wonder sometimes what will happen to our family when I am gone. Who will fight for the the rights we deserve? I take it upon myself to make sure everything is okay.

Dealing with my dad has been the hardest. One day he is thankful for me being around and the next just a ripping on me for being involved. Does he want me there? Does he really mean those things he says yo me? Is he just in pain or does he really mean it. He gets Dementia when he is sick or in pain sometimes. That is so hard to watch.The hardest part is his incontinence. Is just plan sad. Is getting old a blessing? I am his caregiver too when I see him besides Lizzy's Its so hard at times and emotional.
 I want to be strong and able to function when I am his age. How do we ready ourselves for old age?

Lizzy doing well. Turning into a young woman. She has lost some strength but working on ways to help her get that back. Not bad just a few things causing her difficulty. She is too honest, too mouthy and one of my precious gifts. I need to be around to help her as long as I am able.
Just wish I could stop the age clock for all of us and just chill for a few years!! Need to get caught up with just daily things I have missed since so many things have went on this past year.

                                                             Lizzy and her new brother!!

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

Just a Blink and Time has Past - Living with Spinal Muscular Atrophy

It been awhile since my last update. We have just been so busy!!
Lizzy is doing well. We are great. Enjoying the summer. It took so long for summer to get here we are enjoying it while its around.. Took a few trips so far. One to Kentucky and one to see our friends the Poole's in Madison.
Lizzy was supposed to start summer school last week but... sick kids at school with running noses has kept us home.I believe we have changed our mind about sending her now. Why is it some parents can not keep their kids home when they are sick? Its not fair to kids like Lizzy. Just makes me so angry. Well, all we can do is not send her and keep her safe.  I always kept my kids home when they were sick.  She was so excited to go then. boom..... sick kids at school right off the bat. That is okay she can sleep late every day!! She loves that!! Typical tween!! LOL

Lizzy has been in her power chair almost daily for 6-8 hours. Having the Handicapped accessible van has so  much helped her quality of life so much! Paul and I take her to Wal-mart grocery shopping!! Its great!! Her personality is very honest and speaks her mind!! She still says" She loves her life!!" She has been through so much this past year with her dad signing off his rights and jumping out of her life. She has handled this extremely well and her anxiety level is so much better with him not in our lives. Its amazing to watch her and listen to what she says! She pays attention to EVERYTHING!!
She goes to church almost every Sunday too now!! We have missed a few but,we go as often as we can.

We have had a busy summer so far. We went to Kentucky for my niece Alli's graduation. She graduated with honors and got a full scholarship to Berea. We are so proud of her.
My mom passed  in January and it was so hard on Alli.    It was hard on all of us but, Alli was her "Shining Star".  We felt we needed to be there for my sister and her family. It was a fantastic time!! I was good!! I did not shed but, a few tears!! My sister Mindy well , she cried all week-end!! I understand how she feels.  If I would of not had help after my mother passed from our pastor Rev. Ray I do not think I would make it through each day since my past with out crying. He was a great help to me with some situations that occurred after Mom passed away.
We got to see Roman , Susie and Ali while we were in Kentucky!! They all look so great!!

"Enhance the relationships you who do have and do not dwell on the relationships you can not change."  You can offer forgiveness but, you can not make some one care for you or love you if its not in them to do so. I have learned a lot the past two years. I have lost three important people in my life. Two very important people I lost in less than three month almost put me over the edge. I was so close to just having a mental breakdown and doing a withdraw from society. Lizzy kept me from doing so. She is a very wise smart child. She hated seeing me cry and she would talk to me about all sorts of things do get me from crying it worked. Losing ones mother is so hard but losing two mothers in unbearable in such a short time.With Faith you can get through it. I miss my bother Rory and sister Rita so bad at times it hurts. I think losing our mom brought us closer together as siblings but now..... none of them are here.

My sister Mindy and I get a long better than we ever have. I try to remain positive most of the time. I had to get my soul straighten out. I had to forgive, not dwell on things I could not change and just not get so upset so easy. I am "Good" .
My husband Paul turns 60 on Friday!! OMG..... We have been together 40 years! We started dating when I was 15! Its crazy. Looking in the mirror you do not see how you age until you look at pictures! OMG. Where did the time go?  We blinked and its gone!!! Now, I am old and he is old... We have had some hard times and many good times. We have four beautiful daughters , six grandchildren and one great grandchild. We are GREAT GRANDPARENTS!!

Its been a roller coaster of emotions the past 10 years. I think this has been the most challenging part of our lives and learning how to survive some of the roughest times we have faced.  We flew California for Lizzy several times, had to deal with my husband losing his job of over 30 years, we had to deal with his accident. had to deal with him not being able to work , almost losing our house,  been to many states and meeting some amazing people. We learned who we could always count on and those who just blew us off. We learned what it was like to lose  a few of those dearest to your heart. We had to make decisions we thought we would never have to make. The good thing is we survived and we are better people for it! We learned how not to sweat the small stuff and every day is a new day!! I had to learn to give it all to God.

Father's Day was good but, my Dad did not show up. That part upset me but, it was his choice not to come. He is still overloaded with grief. Just wish he would let me into his life but, circumstances I will not go into what has kept me from much contact with him. Sad..  I had to move on and not let it upset me anymore. Its the choices he has made in his life with the people he choice to make those decisions.
 I hope you all have a great summer!

Paul his a 60th birthday party this coming Saturday. We got a hold of some of his old friends!! Its will be a great celebration!!

Please put Lizzy's BFF Sophia Salus in your prayers. She has been in Madison in the hospital.

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

www.our-sma-angels.com/elizabeth

http://www.aadietinfo.com/

Anticipation for Spring!! -Living with Spinal Muscular Atrophy

Hey, Spring we are desperately waiting your arrival.
Cabin Fever has ran into my plea "I NEED OUT OF HERE!" .  Lizzy and I have been stuck indoors since the first part of January. Well, with one trip to the dentist a few weeks ago. I mean come on just to the dentist. That doesn't count does it?
 Lizzy doing any home schooling with me is at a bare minimum right now. She has had a new teacher coming to the house since January, finally.  After, Lizzy's morning ritual that consists of her bath, stretching , face massage and treatments she is on her Ipad,on her computer or right behind me every second while in her power chair. She cracks me up. She told me the other day" Nina, you and I think a like, a lot. Which is okay but, why is every one else not like us?"  I was a bit shocked at this coming out of a 10 year old. I told her that we think a like mainly because, I explain to you why I think the way I do and you tell me why you think the way you do. We are around each other every day and that could be why. She said "Is that weird?" Trying to keep a straight face...... I said " I do not think its weird..... Its okay to agree with me and sometimes its okay to disagree with me if you have a good reason to." She said." Well, Nina.. you are right a lot of the time about things." Oh my I love that kid!!!  She is doing so well these days. I just love being around her. Lizzy is my inspiration.
The weather would not be so bad if it was not so darn cold and the FLU is EVERYWHERE!!
We go no where till we look up the CDC  on  http://www.cdc.gov/flu/weekly/index.htm#ISTE
No one comes in our house sick either. Its written on our doors with a big red STOP sign . If you ignore the sign and come in sick you are asked to leave. We have been basically illness free except Lizzy having a sinus infection a month ago.
Paul has been such a "Grump" being shut in. The truth of it is he gets out a few times a week and still a grump! I know he doesn't feel but, enough is enough!!  Some how I need to break his cranky cycle!!  Lizzy and I usually do well being in but... Not this year. I think its getting to me so hard is because not going any where I tend to drift into thoughts of losing my mom and my step mother. Nothing could of ever prepared me for the grief I have encountered this past year. My heart is having a hard time healing. I sit and cry almost every day. The two most important woman in my life since childhood are gone. I have been trying not to dwell on my grief but, dealing with "Mr  Crabby Pants" (My loving husband) just adds to my emotional state. He stays in his room a lot, is on the home pc for hours or he just complains constantly when he is down stairs. He is in a lot pof pain Lizzy and I agree " We need just to get away from him for awhile." We try to ignore him when he is like that but, sometimes its impossible...... UGH..... Spring, we need your presence so we can go on walks again! We do not need negativity in our lives!!
I have not done any craft things this year as I usually do during the winter. Just have not been able to get into them. It seems I just do not get a chance to do anything extra these days. Lizzy keeps me quite busy.

Many prayers to the families in the East Coast. Terrible Winter Storm hit many areas with bad power outages.
Borrowed this quote. It is so true.

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

Blessings Received, Paying it forward and Losing my Mother.

Sorry, I have not updated in awhile. We were all so exited about this past holiday season and Lizzy getting a handicapped van among other things. We thought finally, we had some great things happening in our lives. Then, a complete shock..my mother was hospitalized the day of our last Christmas gathering with my dad on December 29. The hospital said " That they thought she had a stroke." She could barely speak only make noises and was on bipap at the hospital. She said in a very slow almost whisper" I want to live" That was the day the doctors tried to get her to sign DNR papers. She was doing terrible when she was first in the hospital. I called my siblings home.  Seeing what mom's bipap settings were I convinced the lung doc to put her settings on a span of 10. They also added humidification at my request. Off Bipap she was on 10 liters of O2.  Mom was doing much better on the bipap after that. Then, the skin break down started on her face and she hated it. She would get all upset and take the mask off.  She had a full face mask on. My siblings started arriving and we knew deep down her time in this world was limited.  My bother  Rory and his wife flew in from Kuwait. My sister Rita flew in from Florida, my brother Tim came from around Iowa/IL border and my sister Mindy came from Kentucky.  We all were there to see her almost every day her last week. She was our center of attention and it felt good to have that "sibling bonding". I told her stories of her giving our kids their first baths after they were first home from the hospital and things she loved to hear. I put lotion on her face and combed her hair. My sister Rita stayed with her at night.  She loved her grandchildren and her great grandchild. She loved babies. She always cared so much about birthdays and the holidays that she would buy gifts or send cards. She was such a caring person and loved her family. She was so proud of her kids and grand kids.
She passed on Jan. 6 . The day after a bad winter blizzard. She loved the sun and light. She passed  peacefully looking out the window at the sun, Monday Jan. 6 at 8:25 am. My sister Rita was at her side. I had not left home yet because the roads were still being cleared off. There were sun dogs that day and I feel she was telling us she was at peace.

I have not been the same since her passing. Every thing I see reminds me of my mom. I think of her at least once an hour or more. My heart is having a hard time adjusting to her leaving this world. She had a rough last few years in the nursing home. It was hard for her not to live with her family. She was constantly in pain with her bladder. My heart hurts I could not just take her in myself. I had Paul and Lizzy to care for and I just could not take on more responsibility and do a good job for all three. She wanted constant nursing care so that is why she lived at the nursing home. She told us Christmas Eve 2012 she would not be here for the next Christmas. She made it a few days longer.I need to forgive myself and I have not been able to do that.
It was so hard losing my stepmother a few months ago but, losing my mother was unbearable. Again, three of my siblings, our families and I went through a funeral in just a few months. My dad also was having a hard time with my mom passing. The day she died is the day they signed their marriage license 60 years ago.
I just wish I would of been able to do everything she wanted me to do for her.
The last picture above is my mom the last week she was in this world with Reed, Rylee and me. Sad picture but.. feel the love. Ohh.. just breaks my heart to watch her suffer so.

Christmas had been great this year. My girls had helped a family out this year instead of exchanging gifts. In the past years we had people help us out when we had the roughest time in our life so, it was time to pay it forward.
Paul got Lizzy her handicapped van in Indiana. Thank you all that donated to Lizzy's fund. We did not raise a lot money online but what we did raise helped so much towards the purchase. It was a blessing to have so many kind people donate to help Lizzy. Thank you to all that helped.

Lizzy told her lawyers she wanted three things for Christmas this year. One was her dog Wrigley( which she already had since before her birthday) Two was that she got an handicapped van, and three was to have her name changed to Elizabeth LeeAnn Huette. She got all three. Her name was changed Dec.23 2013 and she got her van Dec. 23 2013. Life is good .

Never thought we would of made it through the last three years but, with faith and with being blessed with wonderful people in our lives we made it through!! Thank you to my friends and our family for helping us get through the toughest times in our lives. Thank you for being there for us.

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

Rain Rain Go Away!! Lizzy wants to go Outside and play!! - Living with Spinal Muscular Atrophy Type 1

Wow, summer kinda came quick this year.  What happened to spring? We have had some 90 degree days already and then rain for a week now. Lizzy wants to go outside!! Enough rain already!! Bad flooding around here too.

The picture above is Lizzy at Heritage Days in our home town last week . Then, her with her cousin Caitlyn and neighbor Blaze. Lizzy is" Miss Popularity" this year here with the kids all wanting to play with her!!
Things have simmered down a bit here if that is believable !! So, much less drama since February .
Lizzy's anxiety issues have gone away!! She is a bit sassy at times but she is not worrying like she used to and whining anymore. YES!! Life is good and peaceful!!! Thank you God!! Christen has her days but over all her heart  is healing and she is accepting things now. Funny how you take one negative person out of your life and positive things start happening. YEEEEEEEEES!!
Christen has lost a ton of weight and I have lost some but working hard at losing more. I have to be healthy I take care of Paul and Lizzy!!

I had a great Mother's Day. I went to church( don't faint). I just have not went in a long while because of the life changes the past decade. So, okay I went. Doesn't make me a bad person for not going regularly. I believe you do not have to go to church to have God in your heart. I pray regularly and thank God for what I have , pray for family and friends.

We took a trip up north  last Sunday and met the Pitzens to give Miss Avery, Lizzy's old power chair. It was great seeing them. We have not seen many families since conference last year. We miss all of our friends!! Getting back in touch with them also is hard sometimes.
The Pitzens are an awesome family. Good friends. Lizzy just loves Avery. Lizzy had to show Avery how to use the power chair. Lizzy did it but... did not like it!! She got all stiff and snotty with us for putting her back

in her old chair.  Notice the look on Lizzy's face!! ( chuckle) Lizzy said "She was glad to give it to Avery so Avery can run all over like her" Lizzy was unable to take her own power chair because of no room. (We are in so much need of a handicapped van!!)  Katy had to do some adjustments when they got the power chair home it home but I hear Avery is driving the "Princess Purple Power Chair" !! Gives me goose bumps to know another child will love this chair as Lizzy used to. Paying it forward is what its all about. The Pitzens treated us to a nice dinner and great time. The last time all of us ate out together ( Paul, Lizzy and I ) was when we were in Madison about two years back. I have a budget I have to stick to. I have to buy Paul's test strips, Lizzy's supplements, groceries and try to all the bills and its not easy.... but, I do it and do not think about what we are missing out on. I think about how well Lizzy is and how Paul's diabetic issues are slightly improving over what they have been in years. Got the keep the positive and let go the negative. God will find ways to get us through. I pray Paul's disability will get approved at his court hearing ( WHEN EVER THAT IS). We have been getting through but... just barely. It seems when we are really struggling and feel like we are not going to make it God helps us and works through others to help us some how.
Found this quote recently and yeah I, feel this way- May God give you:"For every storm, a rainbow, For every tear, a smile, For every care, a promise, And a blessing in each trial. For every problem life sends, A faithful friend to share, For every sigh, a sweet song, And an answer for each prayer."

We are walking at night when its not raining or nasty weather. We are up to 18 blocks!! All of our lives have changed so much this year. Lizzy is up in her power chair 8-10 hours a day most days and wanting to be outside. She is doing so well its amazing. Who knew how will her quality of life would improve so much?  Her spinal fusion has changed her life and her new power chair. I pray to God she stays this well. 

Lizzy has summer school starting next week. 
She also is back in swim therapy and speech. They are all shocked at how great she looks and how she is sitting up so well!! The therapists have not seen her since before the spinal fusion. The look on their faces when they saw Lizzy last week told it all!! Unless you see her its hard to visualize how much better Lizzy is.

We got a new portable Cough asst yesterday!! Then, shortly after we got that we found out that Lizzy was granted a Ipad 2 from GSF for Project Mariposa!! Christen applied for one and GOT ONE!!! My gosh! 
https://thegsf.org/campaigns/detail/projectmariposa/ This is only for children with Spinal Muscular Atrophy.

Lizzy has an Ipad that she had gotten a few years back from one of my best friends for Christmas. It was/ a wonderful gift. A dream come true!!   It s one of the first IPADs  and now because of technology and upgrades her Ipad is not able to do what she needs it do. She has not been able to down load many of the new apps or use it much for school any more. She loves to Skype but she does not  have a camera on her Ipad either. So, It was so great to hear Lizzy was granted one. Thank you GSF!! Wow, I never expected such a great day as yesterday!! Amazing!!whoo hoo

I just want to add something here. For those of you that do not take your kids out of the house. When, Lizzy was four she did not know what a mail box was, a post office, a movie theater and a few other things. We found this out when she was in speech from her answering questions. So, just a bit of my input but..please, take your kids out in the summer to experience things. Even if its on bipap take them out!! We at that time realized we were NOT living we were hiding in our bubble because we were so afraid to take Lizzy  almost any where. Take walks, go museums, go to an art gallery BUT get your kids out of the house so they can experience life. That is why we try to do things with Lizzy every day if we can. Experience life and all it has to offer. You do not have to go far a way just walk around your own town. People also get to know you when you are out and around.  Okay, done with my preaching just something I wanted to share.

Hope you all have a fantastic summer!! We will just be hanging around here at our home town!!

"We believe in miracles because we live with one!!!"
Lots of SMA info at

www.our-sma-angels.com/elizabeth
http://www.sophiascure.org/
http://www.smaspace.com/
http://www.fsma.org/
http://www.aadietinfo.com/
http://www.smasupport.com/

Living life and Challenges- Living with Spinal Muscular Atrophy

Sorry,I have not posted in awhile.There has much going on that has not been good. So, I feel I did not need to write when I feel that way. So, I do not post when feeling over whelmed.

Lizzy lost her dog two weeks ago. Pepper has been with us for over 10 years. Lizzy loved feeding Pepper french fries, pretzels or things she would lick and drop. So sad. When we go any where and come home Pepper would be wagging her tail and shaking her head barking greeting us.

This is the day before Christen and Paul had to take her to the vet to be put to sleep. 

I cried for about 4 days. It broke my heart. She had started throwing up blood and was unable to walk. She had a huge tumor from her leg to her groin area. She got bad very fast. She was a old but we loved her so much. She will be greeting me again some day. Love you Pepper you were the best dog we ever had. Miss you so much. 

Lizzy had some kind of virus the week Pepper got bad. Lizzy had high temp, sore throat and her nose kept filling up. I got her on antibiotic soon as could.  She did really well with this illness and with in a week she was bouncing back.

Lizzy has been outside a lot and all over town . We just went to the library on Thursday. She has been taking walks in her chair with her mom a lot. Its great they are spending more time than ever together. I can get things done like cleaning. Since Pepper is gone I have been shampooing carpets among many other things.

Lizzy is going to have summer school this year. Last year she did not but with her surgery and missing so much school we think she needs to have it this year. We are not able to do any vacations at this point so summer school might be a good idea. Working on many things for Lizzy to enhance her life. Her power chair has helped her quality of life since her surgery.

Lizzy has had to deal with a lot this year. Her father disappeared completely from her life. He blames me still for the break up with Christen. He says" I controlled were they went and what they did." No,  he never did accept Lizzy had SMA and never wanted the responsibilities of a child let alone a child as special as Lizzy. He only wanted Christen. He needed to blame someone so I guess its me. I do not care. Every-one knows the truth. I step in to help Lizzy when he stepped out and just wanted to be Dad for show around others. Lizzy deserves better. Lizzy has done really well with him not being round and gives her own opinion about things. She understands more than any of us would ever guess. She has been less whiney and does not get upset her mom goes out with friends anymore. Its  like she feels more secure that her mom is around more. Its amazing how much less drama is around and how calm our household has become. I like it!! 

Our faithful van broke down again. Christen got the part to fix it Paul put it in and that apparently is not only what is wrong. Not sure when we will be able to get it fixed. So, for now we will just walk and do what we can around town. Its almost to the 200,000 mark. We are doing a fundraiser to raise money for a new one. We have raised 850.00 so far. We are planning some other fundraisers too. We shall not stop raising money until we get Lizzy's the handicapped van she needs.. All the money we raise will go for the van. 

Many challenges have we have faced lately( well many the last few years) but we will get through them. 

Lizzy is my inspiration . Her and my faith keep me going. She is a funny, ornery,sweet , full of questions and such a little fighter. She has so much personality. She has a passion for life and everything it brings her. 

She is hopefully going to get a service dog soon. She was moved up on the list so hopefully we start the process soon. They have one in mind for Lizzy.  A poodle named Logan. I hope they like each other. We should be finding out soon when we get to meet Logan. Now, if we get just a small miracle so we get the van fixed and maybe we will be able to drive 60 miles for her to do that. 

Had a house full today. Its was Rachael's boyfriend's Prom. Rachael and her friend Cassie got ready here. Oh My... She was so cranky and nothing seemed to be right for Rachael!! I called her "Promzilla". I hope they had a wonderful time.

 

Where did the time go? Rachael is all grown up. Seems like not so long ago she was born. Lizzy and Rachael are very close.

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

Tough times and Its Spring finally!- Living with SMA

I need some divine intervention again. Sometimes,I feel I just want to give up and throw the towel in when it comes to difficult times . It seems the difficult times just do not want to leave us. How much can a person take you know? I just can NOT give up ! Its not in my nature to give up.

Paul still has heard nothing about his SSI claim. He can not work. He is not physically able to.

 I am Lizzy's caregiver and I have taken care of her since she was a few weeks old. I feel so bad leaving her if I go getting a job. I guess there is no choice I am going to have to. I do not trust anyone to take care of her. I take care of Paul and Lizzy. Lizzy gives me so much joy watching her grow but then watching Paul  struggle so badly I worry so much about him. He is so cranky these days and he has to nap every day for 2-3 hours. He used to be so good with Lizzy but he has no patience because he is in so much pain these days. I do not get depressed until I start paying the bills and I have nothing left and come up short for one of the bills.  We had a good many years and both of us worked so hard. I just do not understand why we have to be the ones that have endure with the hard times for so long.  

Lizzy needs a handicapped van so badly too. There is so much we need but we get by with so little. 

With out the love from friends we would not have been able to get as far as we have.

Enough , dwelling on the negative!! 

Lizzy is doing awesome. Her Mom and Dad went through a terrible break-up recently but Lizzy has done really well. She is beautiful and happy. She seems to have adjusted well  Kids are amazing on how they bounce back so quickly. She is busy "Bossing " us or giving her two cents on situations!! She does not miss a thing. Love watching her grow into the person she is. What a year but,  we made it through March for the first time in two years with being in Madison!! We can breathe a "sigh of relief". She also had a great Easter weekend. 

Its finally showing signs of Spring. Flowers are starting to coming up through the dirt, the smell of spring , days are getting longer and it is getting warmer. This is my favorite time of the year. The season or renewal.  Now, my allergies may disagree but, my heart is into this time of year. 

Prayers for my sister Lisa. She just went through a major stomach surgery. It was a brutal surgery but, she is on her way to recovery. She just needs some prayers. 

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

www.our-sma-angels.com/elizabeth

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 

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/

A Bucket List or JUST Living Life with Spinal Muscular Atrophy Type 1

I keep hearing over and over about the father from Texas that wrote the blog/bucket list for his baby girl that was diagnosed with SMA Type 1. I tried to keep quiet and I just can not. I sent him a message but I got no response.
The questions that keep bothering and having me wondering where is all the info they got coming from? I felt sorry for them.  but......   as parents do YOUR HOME WORK!! Granted SMA Type 1 is a terrible disease but there is on going research and research drugs available. These kids can have a good life if the parents are proactive in their care.There are doctors like Schroth and Bach that specialize in helping these kids live. If the parents choose palliative care over letting their child live that is their choice, but people let it go!! Not a choice I would make ....but,  I have heard it every where about these people! They were VERY misinformed. Babies are not born with expiration dates.

Lizzy was similar to their baby strength wise and their baby girl might be a bit stronger because they said "she losing strength at few months old!' Lizzy lost her head control shortly after birth and was very floppy. I saw the news report video. She is a little beauty.

Its up to the parents to make that decision to work to save their baby or just let them die.
The controversy over palliative care and being proactive in the care is why people are so upset.



I do want to add that there is a many booklets on care of children for SMA at the FSMA web-site
http://www.fsma.org/FSMACommunity/Publications/  You can download them on your computer and then print out the info.

http://jcn.sagepub.com/cgi/content/abstract/22/8/1027   International Care Of SMA


We try to do as many things as we can with Lizzy but we are also  careful. We sanitize everything, not let her around sick people, she wears a mask while going in/out the hospital for PT/OT and speech and no one can touch her. Plus, every one needs to sanitize their hands and no one in her face. We just use common sense.

We chose to love life and live each day and do everything we can do make Lizzy's life as happy and healthy as possible. She says exact quote " I love my life!"
I can not make a bucket list for Lizzy. She has to do that herself when she is older. Lizzy is 8 yrs old with SMA TYPE 1 also.

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

MY BUCKET LIST
To give Lizzy the healthiest and happiest life possible
To help as many parents as I can with the proper info about care of kids with SMA
To see a treatment to cure SMA in my life time
To live each day and enjoy life
To make sure my family is happy

This is Lizzy - Living with Spinal Muscular Atrophy Type1

For those of you reading this for the first time this is "Lizzy". She turned eight years old on Sept. 29, 2011. She has Type 1 Spinal Muscular Atrophy. She was a very floppy baby and quit holding her head up shortly after birth. I knew there was something wrong very early because she was so weak.
Lizzy was given a death sentence at her diagnosis. Her parents were told when she was 7 months old" that she would die probably before her first birthday longest around two years old. " Lizzy is our miracle, our little fighter and proved them so wrong.
I ( her grandmother/caregiver) did NEVER give up hope or did I ever believe I could not find ways to help her.
I found the Stanford Hydroxeuyra study with main researcher DR. Ching Wang. Christen called them right away.  Lizzys was accepted!! That was our first glimmer of hope for Lizzy's future. We traveled a little bit more than a month after her diagnosis out to California. It was the first time any of us had ever flown and Lizzy was enrolled in Phase 1 blind study. We flew out there monthly. Then every 2 months , then ever since and until a few years ago we drove twice about a year apart. Lizzy still gets the med but from DR. Mary Schroth at American Family children's hospital in Madison, WI.
 Lizzy starting seeing DR. Mary Schroth that is in our opinion the best pediatric pulmonary specialist  for SMA in the whole world. She told us what we needed to do to save Elizabeth's life. The first thing was her respiratory protocol and taught us how to use a cough machine. Next, was a Gtube surgery( Gastrostomy feeding tube insertion is done in part using a procedure called endoscopy. For information on how this procedure is done, see: Esophagogastroduodenoscopy (EGD).
After the endoscopy tube is inserted, the skin over the left side of belly (abdomen) area is cleaned and numbed. The doctor makes a small surgical cut in this area and inserts a small, flexible, hollow tube with a balloon or special tip into the stomach. The doctor uses stitches to close the stomach around the tube.) and Nissen( During the fundoplication surgery, the surgeon improves the natural barrier between the stomach and the esophagus by wrapping a part of the stomach known as the gastric fundus around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily. This procedure is often done using a laparoscopic surgical technique. It can also be done as traditional (open) surgery) .
Elizabeth did well with the surgery. It was done on her 10 month birthday.
Elizabeth had a few illnesses and was hospitalized when we could no longer take care of her at home twice after that but after she was 17 months was not hospitalized again until she was 7 years old with RSV and in March for a suspected HMPD virus where she was intubated but recovered quickly.
First thing is I want to mention we do not have a lot of money but we have found ways to help Lizzy and have a wonderful support system with other families that deal with the same thing as we do.
Lizzy will tell you herself" She loves her life!"
She started the AA diet at age 1 year old and around age 2 started getting donor breast milk because she had a hard time absorbing fat and stayed the same weight and would not grow for a year. The breast milk also helped her health and made her stronger.
She is eight years old as I said. She has a tutor that comes twice a week , Has swim therapy , and has Myofasical Release. She has a power chair and hopefully gets a new one soon because this one is getting too small and her needs have changed. She is on the computer quite a lot and enjoys life.
Lizzy lives here with her mom, grandfather and me her (caregiver and grandmother). We have a old pit bull dog Pepper and two fish.
I always believed in God and Jesus but since Lizzy was diagnosed I had a "spiritual awakening" I guess you can say and let God take care of us. Prayers , HOPE and believing in miracles get me through each day besides Elizabeth's smiling face. Many times Divine intervention have come in to play and help us through the roughest times.

More about Elizabeth  http://www.our-sma-angels.com/elizabeth/
the Amino Acid at  http://www.aadietinfo.com/
Research for SMA , help and support  http://www.sophiascure.org/
research for SMA http://www.miracleformadison.org/
SMA Support - http://smasupport.com/
More links  http://www.fightsma.org/
http://www.fsma.org/
http://www.smaspace.com/
http://www.our-sma-angels.com/b4sma/

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

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!"