Changes and Double digits - Living with Spinal Muscular Atrophy

Where do I begin? This has been one of the best summers for Elizabeth. She has turned into a little lady.
For me? Hmm I would say" I do not think I have worried so much in my life ." It is amazing how much you can learn to live with out  things and adjust. Humans are an adaptable species, I guess.  Its been financially, the worst time in my whole life.  I can NOT focus on our issues in this update because, looking at Lizzy and how great she is doing, you have to give the man upstairs so much credit for making this little girl being the best she has ever been !  She keeps me sane I guess. She makes me smile. She is why I get up each morning. She makes me fight for her!  The stuff she says these days would make you laugh so hard. We shop at second hand stores a lot together. She says to me just a few weeks ago," Are you serious Nina? I would NOT ever wear that" and "That is just ridiculous!"
We have walked almost every night. Few exceptions here and there because, of heat, rain or I can NOT get Christen to go with us.I do not  like going alone with Lizzy because when we take the Wrigley. He can sometimes be ummm ...he can be a bit of a "stinker" . He barks at everyone and scares people half to death because of his size. He is just 9 months old but the size of a Shetland pony!!
We just had a trip to Madison last week. I think Lizzy shocks them on how well she is doing. I say it again. "Donor Breast milk and the supplements  helps her so much" The spinal fusion was a huge factor in getting Lizzy to be able to do so much too. She is in her power chair 8-10 hours a day. She has gained 4 lbs and 8.5 ounces since February. DR. H just glowed when he saw Lizzy. He is so great!! he said "She looks so much like a little lady". He only wants to see her once a year now!

Jerika Bolen was also in Madison. She was getting spinal fusion done like Lizzy did in November but, Jerika had other issues too. She had  gotten her growth rods out and some other things done also. Lizzy was very worried about her so we spent most of our trip with her after Lizzy's muscle clinic visit and before we left.

Lizzy will be double digits in a few weeks!! She is going to be TEN years old!!! It does not seem like it at all. Life just flies right by these days I guess! This year will be different. Her dad will NOT be around. He always got her anything she asked for at birthday and Christmas. He has chosen not to be in Lizzy's life anymore. Its sad but, he had issues dealing with her disease any way. He has not been around a whole lot the past few years except for holidays and birthdays. Lizzy is doing really well with the changes though. He has not seen her since January. Her anxiety is so much less and she totally is okay with him not being around. Wow, amazing how kids adjust so well. Thank you  lord above.

Lizzy and I have been working on school work almost daily. She is learning so much! I started teaching her about History too recently. The History of our county.  Christen taught her some stuff over the weekend.She is like a sponge. She was supposed to start school  but.. has not happened yet. Maybe tomorrow.  I have been teaching her myself .  I think we are falling in the cracks again. Lizzy's IEP did not go in a way we hoped. IL requires a minimum of 5 hours a week home bound instruction. KEY WORD "MINIMUM" So, the school says they will only give her that many hours. I have some resources from IL State Board of Education updated Jan 2013 that will come in very handy. I thought things were going to go smooth for us this year but,actually they are doing her an injustice. She needs a good education. So,if they are not willing to provide her one then, we will send her to a special needs school and the district will have to pay for it.  We shall see after the testing she is supposed to get soon. Lizzy needs asst tech things to help her do what she needs to do and the school is not willing to help from what we understand. We have a My Tobi eye gaze system that was given to Lizzy and the school  is unwilling to help update it for her because, they want her to be verbal. Well, the eye gaze is also for accessibility. They  just do no get it!!  Lizzy can only use her computer laying down. She can use her Ipad sitting up and does a great job but... many of her programs are online on her computer. We just have no one in our area that understands her needs for assistive tech. I feel a few challenges coming on in the near future for us. I am up for it(cracking my knuckles LOL) . Lizzy needs what she needs, plain and simple. She is NOT  mentally challenged. She just needs some help getting what she needs. Grrr Why is this so hard?

Lizzy was left this beautiful porcelain doll from her Great Grandma who went to heaven in February, this year. She loved Lizzy and was so proud of her. She was a very great lady. I know she watches over Lizzy. Her Grandpa Aaron and Grandma Sue brought it to Lizzy. They are very nice people.

We got a new BM donor for Lizzy. We got almost 1200 ounces in donor milk yesterday!! AWESOME!!. Thank you Haley!!

Prayers for my grandson Corbyn .He still has a virus he caught a few weeks ago. Poor  little guy!!
Many prayers for MJ and prayers for Jerika !!
Extra prayers for Paul. To get his sugar under control and to win his SSI case. He has been unable to work since his accident July 4,2011. It would make our life just a bit more easier.

"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

What else can happen to us? (Spinal Muscular Atrophy)

We just got a letter from the Donor Breast Milk Bank and they are stopping Elizabeth donor breast milk because Lizzy insurance has not been paying . We had no clue they were not paying. Lizzy's insurance had prior approved Lizzy milk so all this time we thought they were paying. What are we going to do? Lizzy has to have that donor breast milk to thrive and survive. I have tried everything I can on Lizzy nothing works better with her tolerex mixture than donor breast milk. She has so many issues with diet because if her disease. Fatty acid metoblism disorder. I am just a mess right now. Tears are flowing down my face. I dont know what to do. This is one thing I can not fix. I have a wonderful lady that is sending a box of her breast milk but I have no clue on how much. Then, when that is gone then what? She is so great to help us but what after its all gone. Lizzy gets 16 ounces of breast milk a day and 20 ounces of breast milk a day when she is sick.
I am just sick.

Paul goes back to work today after his teeth being all pulled. I got the court documents online. The union and his job is ending March 4. No more extentions. We have come to the lasts days.

Lizzy on the other hand is doing great. She is bouncing back. Still not all cleared up yet but ornery as heck and ready to rock and roll. She has been talking about going to Kentucky to see all her friends constantly at CCK. Wonderful place for special need kids.

You ever feel like you have just ran out of all options? Ever feel totally helpless? Every feel like you dont know how you can continue to keep fighting? You ever just get so tired and need a rest and are not able to do that? You know you have to but dont know if you can? Its not like me to give up but..... Lizzy is such a wonderful child and what am I to do this time?

We do believe in miracles and right now we need a few God if you are listening.
www.our-sma-angels.com/elizabeth

What does the future hold for us?(Spinal Muscular Atrophy)

Tis the season to be start writing your list for what you are going to buy your friends and loved ones. Usually, I get a warm fuzzy feeling just thinking about what I am going to buy for who. This year is the first year that I can remember where I am actually worried if Paul and I buy presents if we will have the money to live on in January. The kids talked him into a gift exchange where we only buy two gifts. Which I was very upset about but..... knowing what I know now I actually get sick to my stomach thinking about shopping. My husband's plant where he works may just shut down. They have laid off many due to the economy. He was down-graded and lost $2.00 and hour. Then the utilities have went up. Our water bill just came in and its $72.00 for one month. That is just water. What is up with that? Now since its cold the heater has been on so what is the gas bill going to be? I am shocked at how things just keeping going up and then my husband pay goes down? What is wrong with that picture? We are trying to figure what to do. We can sell the house but the upgrades have not been finished and with Paul being in a sort of depression he has been in I don't see him completing those tasks anytime soon. The kitchen has half new cabinets in that I bought that were demos a few years ago. The tile floor is done and Lizzy's Dad helped with that. Every time I say anything about it I am "Nagging" I give. I don't know what to do about getting it finished. I am getting a part time job as soon as I can after the holiday. I can not take it anymore. I will get these things done myself. If he loses his job we are out of here. Moving up by Chicago or Wisconsin. Where ever he can get work . This is really scary. I have college behind me so it will be easier for me to get a job plus I have also worked as a Hospital cook, Bartended and management in retail.
Enough.... Of that.

Lizzy is doing well. She is out shopping with her Mom and Dad to get her friend Payton a birthday present for tomorrow. The kid was worried about going all day. She kept saying "I need my Mom so I can go to Walmart." She said it probably close to 40times today. It got dark and she was worried she would not be able to go." I made sure they kept their promise to her tonight. She has a face mask on so she doesn't get sick. Lizzy is so much my heart. When I put her to bed every night she says "Nina I just love you." I say how much? She says "to the moon and back"

We are having Thanksgiving at Dana's house this year. I told them Lizzy is taking her power chair too.

I haven't heard much about our prison except they got them to stop transporting prisoners out till Dec 1st. Scott McCoy our mayor here and Dan Rutherford State Senator are working HARD to keep it open. The Governor has actually paroled men that have got out and killed people. Yeah..... REALLY . You know that actress that recently lost her relatives in Chicago to a killer? That guy accused of doing the murders had got out parole here In IL after serving 7 years for attempted murder and with the governor's NEW Plan all these hardened Criminals are getting out!! Scares me!!!!!

Here are two articles on what is happening here.

http://www.pjstar.com/opinions/x2067099653/Adams-Hudson-link-a-red-herring-i
n-prison-saga

http://www.suntimes.com/news/mitchell/1290133,CST-NWS-mitch20.article

Feeling better/Another medicaid Insurance Denial(Spinal Muscular Atrophy)

Elizabeth is feeling a lot better. Her nose is still full of stuff but she assures me she is ALMOST well. I think this illness is going take awhile to fully get over. She was still on Q-3 till 6am. I was getting ready to start a treatment at around 6 am she said "Nina I just want a cough and suction. I don't need nothing else" So we have went to more coughs and less nebs today since she flowing. Her treatments are going pretty well. The gunk went from thick white gunk to clear to thinner white gunk. She is still drooling like crazy

Lizzy was denied her RSV shot today . My stomach sank to my feet when I heard that. Imagine that? They said (The Dr for Medicaid here in IL ) "Since she is 5 years old her immune system should be strong enough to fight off RSV now". According to out doctor's nurse here since she said she talked to him on the phone for a long time today. So, much for all research they did about SMA Type 1s. I have contacted DR.Schroth but have not heard anything yet. So, we are in panic MODE. I dont know what else to do. Cancel all her appointments and stay home all Fall/winter? Cancel Holidays? No one comes in or out? We are careful but you never know who is coming down with what. Last year she didn't start the shots until December. If she gets RSV we are talking about several days hospitalization. If she gets RSV with having the shot it is not severe and with out the shot she could die. They just do not get it. She is only 24 pounds so its not like she will a huge amount.

On a good note the Xopenex was finally approved. I do think Senator's Rutherford's office had something to do with getting it approved. Thank you Peg if you did.

Lizzy was in her power chair tonight and ran over her Mom so she got put in the corner with her chair off for 5 minutes tonight. You should of heard her. "I can not take this any more, This is terrible, You are so mean to me Mom, Oh my gosh Nina what time is it? " She did this for 5 whole minutes non stop. I had to hide my face I was laughing so hard.
God Love her she is such a little character with so much spunk and always something to say!!
Pray Lizzy can get the RSV shot or we find a way to pay out of pocket for it. I am just sick.

Obama-wins!! This is History!! (Spinal Muscular Atrophy Type 1)

The people of the USA have spoken. They wanted a BIG change.
I (I am sure many others also did) sent letters to Barack Obama about the SMA Acceleration Act and if you look in the current NEW FSMA Directions magazine its in the legislative update he is a supporter of it.

He also has helped us with Lizzy as some of you do remember.

He is a great guy/American with vision. He cares about our kids and the American people. People all over the world are celebrating his win. As I am. He loves his family, He is religious , loves his country and HE LISTENS . We needed some one with family values and with a great vision on the way things should be.

So, many people wanted change, the polls showed and I think that is why Obama was made president elect.
Those southerners(People I know anyway) that are objecting about McCain are not people who can handle change and are very bias. They do not understand politics and are ignorant about what needs to be done to get this country back to the way it should be. What are they going cause another civil war? Get real people and grow up and face facts. The way our country was heading we were in big trouble. Lets just see what he does.
I studied political science for two years in college and learned so much and started listening and watching.

I think he will make these lazy families that keep having babies and do not work ACCOUNTABLE for their actions. The ones that abuse the system.

Plus, Sarah Palen in the White House? She might be a go getter but to put her in the White House when she could not even answer one question at the debate directly tells me she is not person for the white house if something was going to happen to McCain who showed many times his temper in public. She dogged Obama badly and lied numerous time.

Lizzy voted with us yesterday and told everyone she voted for Obama. I was in the kitchen doing dishes and she kept running back in forth saying " Nina they said Obama is going to win" . and "They just said it again!! "

Both my parents voted for McCain and they are not talking to me today. LOL They too do not handle change well and seeing in their eyes a" Black" as president is too much for them to handle. So...... its best I do not discuss this them for a very long time.

Lets just all see what he will accomplish in her 4 years.

I am not going to get into any more debates about this. Its over he won and I think its fantastic!!

When his office helped us with some issues with Elizabeth a few years ago I said at that time he needed to run for president because he CARES.

Congratulations President-Elect Barack Obama.

Speech eval , Tiarra and Tea - living with Spinal Muscular Atrophy Type 1

Lizzy had a busy week.
She had PT with Monica on Tuesday and then she had a speech eval with a new person in her life Allison on Thurday. Allison her a new speech pathologist. She said Lizzy talks very well and thinks I have done excellent with her exercises her mouth and keeping her muscles moving. Lizzy is 5 and has lost minimal facial movement. She did quick sort of IQ test on her and after some questions to Lizzy she determined that Lizzy is right on track for her comprehension levels and knowledge for a 5-6 year old. She was quite shocked Lizzy is a Type 1.
Allison was upset we have more or less slipped through the cracks and no one has (here) has thought Lizzy needed speech therapy. It is sad the life expectancy (Which was 1 1/2 -2 years old) has held up so much. Its like no one wanted to help us at times because they thought she was not going to be here any way. BUT GUESS WHAT ??? LIZZY is still here and going strong. Allison is going to help me with Lizzy's stimulation in her mouth. She said she will help me maintain her facial muscles and maybe even be able to help her more than I can do. I have worked for years keeping those muscles moving and making sure she uses them. Lizzy still does the Elvis lip curling imitation also. She made Allison laugh.
Lizzy and I agreed we think Allsion is going to work out just fine.

Lizzy got all dressed up in her tiarra with Rachael and had tea today. It was too funny. They had tiarras on, all the bling you could imagine they both cracked me up. Lizzy was talking in this strange little pretend voice.

Hopefully this week we will be going to Madison and get Lizzy fitted for an arm brace. We will get to see Charlie his sisters and Sophia. They both have spinal surgery this week so please keep them in your prayers.

Time to go do some baking.

Its actually been so chilly here that the heat has been on at night.

Official 2009 Spinal Muscular Atrophy Calendar

Hi everyone:

Just thought I would give you the Official 2009 SMA Calendar Update. As of today the calendar is up and is available on Cafe Press in the B4SMA store. Once again, the calendars will be $20.00 with the profits going to Marshall's Miles and SMA Support. It is http://www.cafepress.com/b4sma/1826918This calendar was designed to raise awareness and funds for Spinal Muscular Atrophy.Buy your OFFICIAL 2009 SMA Merchandise today! Proceeds from merchandise (other than the calendar) benefits B4SMA! For Merchandise, http://www.cafepress.com/b4sma/3677699This year, there are almost 140 kids that are featured. Thanks to Logan P's family for suggesting a montage, so in order to feature each kid individually, MJ has created a montage at one true media. Watch the promotional video http://www.onetruemedia.com/shared?p=69500ee4ac7d16e9a6cea1&skin_id=1603&pid=624&utm_source=otm&utm_medium=text_url . I encourage you to bookmark this montage for your convenience. For those of you that have blogs, please post this information to hopefully get more people interested in the calendar this year and to create more awareness for Spinal Muscular Atrophy. There will not be a cheat sheet this year because once you watch the montage, you will not be able to forget these precious faces.

We are back from our great week-end at The Center for Courageous kids Camp. It was absolutely fantastic time. It was like we were all treated as royalty.
All the staff was so great to all of us. They showed so more interest,caring and compassion for all our kids. Lizzy had a super great time.
There were lodges for the families and they had rooms that slept 8 with your own bathroom that had 4 stalls (1 was handicapped accessible )
and TWO showers(1 handicapped accessible. They said they can house 32 families at a time.
They prepared 3 meals a day for us at NO charge. They had entertainment like Karaoke, Bowling, crafts, wood working, horse back riding, BINGO (with prizes) swimming there. It was like ( I heard a parent say) Make a Wish part 2. Its was amazing .
We had great time talking at visiting with the parents.
We got to see MJ, Chase, Jacob , Conner, Alex, Leah, Annah, Dani(for short time. She was not feeling well) and their families. It was a great time . We got meet a lot of new people too. Angel Kaydence's aunt was there too. Great talking to every-one.
Lizzy met Ben and he stole her heart. He was one of the camp's staff members. He even serenaded her with his guiter. She bonded with MJ as I knew she would. She always has loved MJ.
Quite a rememberable experience. If anyone gets a chance to go I really
suggest going!!
Now I have about 30 emails to get caught up on.

Fall at a glance

Lizzy is doing so much better. She is getting junk out that I did even know she had in her. She has been doing pretty well last few days. No fever. Eyes are cleared up and her spunk is back. Her attitude is back 4 3/4 years old going on 16. She will be 5 the end of this month. I can not believe it!!
Lizzy decided that "Kid Rock was hot "when she saw him on the TV at the motel we stayed in last Sunday for our area MDA Telethon. Where that one come from I have no clue.
Fall is sneeking up on us *sigh*. Its been a great summer. Lizzy has done so much this summer.
We have a trip to meet a some families in Kentucky this next week so I pray she is totally recovered by this next week. No road trip if she is at all sick.
We are also gearing up for our Stanford trip next month. October is almost here UGH..... that means winter is close behind. brrrrr
It was cooler last night and a peek at fall was upon us. We have to get our bubble ready for winter soon.
We are still trying to figure out what to do about school. She will not be in kindergarten till next school year so she will be with the same kids as last year. I am going to try to homeschool her but I need to get materials for her. She is a sponge when it comes to learning. I have taught her a lot already with out even trying hard. She did enjoy school the past to 2 years but the parents of some of these kids do not get why they should keep their sick kids home even after the letter we sent home. explaining why you should keep your child home when they are sick. That illness she got last year scared me so badly she caught at school. She was so sick.

Well time for my girl's treatment and then to bed.

Prayers for : MJ, Sophia S, Courtney,Madison B, Ethan B family, Emily, Ally,Hayron , all the sick kids and families that have lost loved ones.
I found this great web-site for mom's with kids with special needs. You need to check it out. http://www.mothersfromhell2.org/index.html its got some great resources on it for ALL states not just IL.
Thank you who all watch this blog. It means a lot to me.