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

Lizzy doing well (Spinal Muscular Atrophy Type 1)

Lizzy is doing better. This morning though, I got out two HUGE plugs in her nose. She kept saying she had more...... OMG..... it was unreal but I got them. Thank goodness for those nasal acorns we have. If not for them I don't think I could of gotten the plugs out. Lizzy even went to swim therapy today and LOVED it!! We just put a mask on her and took her in the hospital. The OT that was helping today I actually handed her a mask since she said she was getting over a cold. Lizzy has not been in water therapy for awhile so this was great. DR.Schroth said we could take her. So, we are going to take her to her therapy sessions unless she has a fever. Swim therapy also breaks up stuff in her trunk in her chest. She did excellent today. She is actually taking a nap right now. Rare occurrence for her.
No green gunk just white and clear. Yey!

We heard about a almost one year old baby girl that passed away today because of this disease. I hate SMA. I flipping just hate it. It takes the life of little babies and so many kids. We will pray for this family they will be in our hearts.

Better again.... hopefully (Spinal Muscular Atrophy)

Lizzy seems to be doing great today. I am NOT understanding this but I am happy she seems to be a lot better than yesterday. She has more secretions but everything is clear. Thats a good thing if she just keeps improving. Then I will not be so worried. She loves being in her power chair. She is too funny. She likes driving into the kitchen just to throw stuff away all day!! "Nina I will be right back I need to throw this away." Then off she trots. She is not as naughty and she has been. Maybe because Mom was gone all day. Hmm? Lizzy and I read books, watched Harry Potter and just talked about "Stuff" today. She was in a great mood all day.

Addison K our friend was admitted to UW in Madison today. She is the best hands. DR. Schroth is the best in our eyes. Prayers for Addy

Dr.Schroth called last night to check on Lizzy and she is also not understanding this either with Lizzy. We are getting cultures done to see what is going on. Lizzy told her she was sick and that she has been bad. Yeah..... that is my Lizzy she tells it like it is.

Prayers to all the sick kids !!!!! Spring is how many months away?

Long week (Spinal Muscular Atrophy)

Lizzy is getting better but gosh..... she still has gunk. She acts totally fine and better then thicker secretions pop back up. She has been off antibiotics for three days and I am still doing extra treatments. Its been a week today I guess so I need to relax and just keep doing what is needed and not worry so much. Easier said than done. Its seems like weeks. She actually has been sick off and on for three weeks.
Its been an interesting week.

Paul was home sick from work yesterday and still sick today. I have not seen him this sick in long awhile. He has something totally different than we had. He is keeping his distance.

Its cold and they are calling for snow. Now the reality of Christmas has sunk in about a month. The kids are forcing us into name drawing. I do not want to do that even if I have to buy everyone something little. That is not how we do Christmas. So this is going to be a new experience for Paul and I. Some how we always do Christmas. It been harder since I have not been working and taking care of Lizzy but we always done it some how.

Many prayers to Ethan T and family. Ethan has MAW trip. They left today from Connecticut driving an RV.
Prayers for all the sick kids and all the people not feeling well.

I hope things start improving for all Americans VERY soon.

Update on Pontiac Correctional Center:

AFSCME Council 31 is sponsoring a "March on the Capitol!" in Springfield on Wednesday, November 19. There will be a rally at Illinois AFL-CIO, 534 S. Second Street, Springfield at 2:30 followed by a march to the Capitol, a few blocks away. The intent is to let Governor Blagojevich know that we say NO to closing Pontiac Correctional Center.

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.

Lizzy is sick (Spinal Muscular Atrophy Type 1 )

Lizzy woke up so sick this morning. 102 fever at 3:20 am this morning. I have been doing treatments more then q-3 and some q-2 1/2. Heart rate was in the 170s!!!!! She was in the 120s and 130s 10:30 pm tonight . O2 is staying at 97-96 so that is good. Her heart-rate is usually in the low 100s awake and drops to the 70 and sometimes high sixties sleeping.
I have gotten almost everything ready just in case a trip to Madison. Hopefully it will not come to that. I pray I can do this at home but if she doesn't remain stable on with her O2s we will be going but so far its just been stressful worrying about her but no low o2. Her higher heart rate scares me. She had thick white gunk but it has started to thin out.We got her back on Zithermax but it she has what we did its viral and the antibiotic will not work ugh..... I have not fully recovered myself. I am very tired. I even wore a mask to sleep almost all week in so she didn't get her sick .. I even washed my hands an sanitized more than normal. I used gloves for treatments I wore a mask constantly. Lizzy's father on the other hand was sick 3 days or more days before me and did not take as many precautions!

Lizzy has not been this bad in a year.

Just finished another treatment and she is doing better. She is on her magic mixture of pedilite/Breast milk and Tolerex .
She feels she has had too many treatments today. Glad she can keep her humor up. She is been very hyper today and has talked non stop.
Love her with all my heart. She is my girl. She has spunk and determination,

Please add her to your prayers.

This is the 3rd time she has been sick in two months.

On a good note Senator Dan Rutherford's asst Peg will be trying to figure what is going on with the insurance denials for Lizzy.

Medicaid Insurance Denial for daily Med(Spinal Muscular Atrophy)

On Tuesday we got a phone call from the local Mom and Pop drug store after we had called in refills for one of Elizabeth's daily meds XOPENEX saying it was DENIED and the doctor had to get prior approval before she could get it. Okay.... dealing with something like this has been what has happened to us several times for things recently. I calmly told Christen(Lizzy's Mom) and she called the doctor's office and they said they would take care of it. So, after talking to out docs office and they saying everything is approved we went to go pick it up and the pharmacy said its DENIED still. Okay...... Lizzy has been getting this med since she was 17 months old. She is now 5 years old. This is a daily med what the heck is going on??? Called the doctor back and they said this morning after they got the approval they got a call back saying they needed a Letter of Medical NEED for it . So to get an LMN he has to dictate a LMN and transcriptions has to write it so it will be awhile to see if its gets approved. THIS IS A MED SHE USES DAILY!!!!!!!

Okay, I am so upset it is not funny. In the past month Lizzy has gotten all her equipment applied for with LMNS denied. IL Governor Blagojevich has used the money for special need children to fix our roads. That is totally wrong. I do not know what to do but I will find a way to get her what she needs.
She has been denied in the past 2 months:
1.) MANUEL wheel Chair(hers is too small for her(and also borrowed) and we do not have a way to push her in her power chair when she is sick . She can not sit when she is sick. No Adult controls)
2.) Adult push handle and controls for her power chair
3.) gel pads for her power chair arms (since the metal arms put bruises on her arms)
4.) Stander (we had a borrowed one until she grew out of it)
5.) a desk top for her power chair (so she can use it for school work)
6.) Had to get a prior approval for Carnitor a med Lizzy has to take every day and it took weeks to get it approved
7. Xopenex a daily nebulizer treatment

Okay Governor Blagojevich tell me how all this road work is more important than these children? You suck

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.

Vote - it is your right as an American (Spinal Muscular Atrophy Type 1)

Please vote tomorrow if you have not voted early. It is your right as an American.
This will be one of the biggest most important elections in history. We have the best country in the world!!
I will probably stay up all night tomorrow night until I find out who wins.

We are sending prayers to Barack Obama and his family. Sadly, he lost his Grandmother in her sleep last night.

Obama's office helped us when we were not allowed to fly a few years ago. Lizzy has a feeding pump and the airlines refused to let us fly because of it. We got a free flight(That we used to fly to CA for Lizzy drug trial also) and gas money for all the trips back in forth to Chicago(We live over 100 miles south) because of how they helped us and the feeding pump was put into a different category and we have had no problems since. His office was so great in helping us.

Lizzy is doing great. She had on Barbie shoes and turquoise knee highs socks today from her friend Lauren and thought she was something. She loves shoes and cool socks. She was driving back and forth from room to room today just having a great time. I should of taken a picture of her but I did get the chance.

I am sick sitting her with a face mask on making sure I don't get her sick again. I am sick. Went to the doctor today and I have a viral infection. I am so upset and hope I did not infect Lizzy. It is awful. I have this "Killer Cough" that will not stop. My ribs are so sore and of coarse I am not sleeping because I have been UP coughing all night long. I hate the hot breath blowing in my face but what else am I to do? Got to keep my girl from getting sick.

I am very upset about that family that was accused of child abuse and then the murder/suicide of the Mom and father . The baby passed way this past week. That has to be one of the hardest most heart breaking stories I have ever read.
http://behindthebluewall.blogspot.com/2008/11/co-officer-oshell-murder-suicide- update.html


No trip to Wisconsin tomorrow with me having a viral infection.

Many prayers for the sick kids and please say some so Lizzy doesnt get sick from me.

Again I remind you to vote tomorrow!!!!!