My Updates!


 

 

November 16, 2008

Lizzy has been sick now off and on for over 3 + weeks . Dr. Schroth called tonight and Lizzy going to get another culture done again tomorrow. She is acting fine just a bit higher heart rate. She isn't sure if its viral, sinus infection ,two separate illnesses or bacteria infection.  She has no blood at all. The lowest her O2 drops in 96 . Her heart-rate has been higher than normal but not by much. She has been REALLY ornery though. Running her Mom over in her chair. She even put herself in the corner yesterday.
She has been on her power chair every day considering she has not been to her baseline.
Lizzy told Dr. Schroth was she was being bad. I guess Dr. Schroth told Lizzy to be good. LOL
We have bipap issues, mask issues  and all sorts of things going on  but I think we are okay now as far as those issues.
Lizzy started coughing up green gunk this morning but..... its better tonight. Dr. Schroth said I am doing everything I can do to get her over it. Christen wanted to wait for another antibiotic till after the culture.
Dr. Schroth said to take her to her appointments this week just put a mask on her. She has to get back into her therapies.
Just pray we get this figured out.
 
November 11, 2008

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 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 our 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 (medicaid) did on SMA Type 1s. I have contacted Dr. Schroth but have not heard anything yet. So, we are in panic MODE. They KEY is keeping her healthy and OUT OF THE HOSPITAL!!!!!  I don't 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  about 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. You are so great.

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 thinking she might get RSV. So many kids with Type 1 were so sick last year with RSV and hospitalized for a month or longer.

October 11, 2008

This Stanford trip was the best ever as far as flight and arrangements on our stay. We went site seeing with Molly, Andy (Andrea Doebbert's aunt and uncle) , Jennifer , Jacob and Todd Goodson. We went to Pier 39 where the seal lions have made a home after the earth quake. Took pics of Alcatraz, (could see from the pier) The Blue Angels were practicing and we got to see them. (Lizzy hated the loud noise) I almost peed myself a few times watching them coming so close to hitting each other. Lizzy and I took off though when she said the noise was hurting her ears. We went to park that the Canadian geese that migrated their after the park was complete and have not returned home.
We saw San Francisco down town and their very cool houses , the Golden Gate bridge park and the Pacific ocean.
It was truly a great trip. Lizzy was something....... LOL . The night we got there it was late. I did her treatment as usual and she was doing so great. Well I got woke up from her alarming at 140 heart rate. So, I asked her" if she was sick" and she said "Lady.... I am NOT SICK!! I just want to know what is in the package up there " I said huh? and looked up where she was looking and Molly had a birthday present for her that she had not given her in a pretty package on top of a antique bureau . LOL. I laughed so hard. She finally told me she was pooping. That was the cause of her high heart rate was high.
The visit with DR. Wang went excellent and he is totally shocked as everyone how well Lizzy is doing. He said he leg movement thing she does is like something out of a ballet. Lizzy has gained more weight again and looks totally great. He spent most of his time with Lizzy and he didn't not talk much to us. He shook our hands and said she is doing just excellent and was so awed at Lizzy's movement, talking and just Lizzy in general.
I guess the media people tried to call us and told Virginia (coordinator for Wang) and told her Channel 11 news was supposed to be there. Because something had come up they canceled. We had no clue they were even thinking about doing that. Thank God we didn't have too!!! They can wait till I lose some more weight . ( I hate surprises like that) Robert Dicks the media person from Stanford came in and saw Lizzy and took pics of Lizzy and her favorite nurse for the year end report for Stanford. Robert told us Lizzy was just one the most beautiful children he had ever met. That made us feel good and Lizzy looked at him and you could see the sparkle in his eyes. DR. Wang sent two residents in to LEARN about SMA so they got a quick detailed report from us on Type 1s and they need to understand SMA. NIV,AA diet (and breast milk) and how to help these kids stay strong by stretching etc. They loved Lizzy also.
The trip home was great except for the late flight last night
Molly and Andy made the trip so special. We stayed with them this time. Very Intelligent warm compassionate , heart warming people. They are like family to us. Their home is just beautiful.
We have to go back in March not sure when. That was something that we didn't not compromise on. No way we are flying during RSV season. We are always now taking the later cheaper flight and staying that extra day. Worked out great.
American Airlines were very accommodating on the the trip there and some of them were on the trip home. We do pretty well traveling with all 6 of Lizzy's machines and all of them not getting broken.
 
Thank you for ALL the birthday wishes and gifts for Lizzy!!!  I have not had a chance to write Thank yous yet but it will be soon!! 

September 30, 2008

Its been a great time this summer/fall. So many places and so much fun with Lizzy. Lizzy has had a great summer.
We have met new friends and enjoyed being with our good old friends.
So much has happened and so many wonderful things.
 
THANK YOU ALL FOR THE BIRTHDAY WISHES FOR LIZZY!!!!!! SHE HAD A GREAT DAY!! She had a small little gathering birthday party on Sunday with cake and ice cream. Yesterday, she had phone calls with birthday wishes from all over the country from 9:30 Am -10pm last night. She had ecards (so many ecards)She had her boyfriend Charlie sing to her on the phone. She had our friends from California Molly and Andy sing to her. It was quite a day . She had some presents in the mail from so many people and more coming!! She even had her teacher(From Last year) stop by the house last night and bring her a present. Lizzy was dressed in her (fancy Nancy Dress LOL )Thank you ALL for what you do and have done for Lizzy. I am truly touched. I still can not believe she is 5!!
 
We leave for Stanford next week. I get to be a bundle of nerves every time we fly.
 
We looking forward to seeing to seeing Molly and Andy in California. They are so much fun and such great people.
 
Thank you MJ for all you do for Lizzy
 
Many Prayers for MJ, Mary Kate, Sarah, Aubrey, Lila and all the kids that are sick.

September 8, 2008

 
I am getting ready to get Lizzy her treatments and I have been thinking about some things. I need to vent some more.
You know there our very bitter people in this SMA World and it upsets me because their children feel how bitter they are.  I am not talking about the  parents that have lost children due to this terrible disease. To lose a child to such a disease would totally tear a person's heart in half.  I am talking about the parents of these kids that are living . It saddens me that a child must feel bad about themselves because every day a parent comments on how mad they are their child has this terrible disease. We hate SMA but we live life to the fullest for Lizzy. We so want to give Lizzy the best quality of living we can.
No one is responsible for this disease and so people need to quit blaming their selves , their spouses and get on with life and do the best job you can do caring for these kids.
Yes, I hope the government passes this bill to help find way to treat and cure this disease !! So many babies and children have passed away. Every time child passes from this disease another piece of my heart hurts.
But ....I am not so absorbed in hating this disease that it takes my passion and my direction away to help Lizzy . I do the best I can for her. She is my focus and all the kids helping the ones that are living, live the best quality of life they can.
I have been judged lately because people say I have "accepted "our life. I  have not accepted it I just do not dwell on it.  I deal with it. I do what I can do for these kids.
I get  VERY upset when parents DO "Nothing "to help these babies /kids.
 
I just do what ever I can do for Elizabeth. To keep her smiling and happy. You know its the" now" they are living . My life is not going to sit still and wait for a cure. Help these kids now with interventions so if a cure or treatment does come we will be ready.
What I am trying to say. Is I do what I can do and make life as happy as possible for Lizzy safely.
She is my life, my heart, my hero and my light.
Please think before you speak negative in front of these kids. They are smarter than you think.
Thank you all that helped me with Lizzy!!
I am so proud of Lizzy and all she can do. Those eyes that smile makes my life worth living. I am NOT afraid to say it either. I will say it again. I AM PROUD OF ELIZABETH AND EVERYTHING SHE CAN DO!!!!
God Bless
 

 

September 7, 2008


I can honestly say Elizabeth is finally over being sick. Wow!! She amazes me. She wants to go outside and swing in her swing and drive her "Purple power chair" . I am back to her regular treatment schedule.
So it looks like our trip to Kentucky is still on. I really think it was the weather that contributed to this illness with Lizzy. I also had a sinus headache for days!!!! Lizzy had been doing great until the day went to the Executive lock up for the MDA the Wed before the telethon. She plugged on the way home. We had to stop and I work on her for a while to get it out. Every time she does this I think I age 10 more years. At least she tells you what she needs. There are many kids that can not talk with this disease. Since then she had plugged almost every day. It was so hot here the high 80s and 90s .
Paul(aka Papa)  was bumped to second shift due to massive lay-off at the job he has been at for 30 years. He is not sleeping well and he is terribly depressed. he was bumped to welding from maintenance mechanic. Poor Papa. Hope this lay off does not last long.
Well time to take Lizzy out-side. Its Beautiful here today.
Many prayers for our sick friends.

 
Please go to this site and sign the petition to help pass this bill. Help save these kids!!!
http://www.petitiontocuresma.com/
 

 

September 2, 2008

The MDA telethon in Peoria ,IL was Sunday and Monday. Lizzy did great but it was a different atmosphere this year with all new people from the MDA. They did raised a lot of money in our area.
 
We just love the WMBD news people. Lizzy loves Bob. He had his 2 week old grandson on the air with him. She likes Chuck too and she met Kurt.
 
Our" Smiling Fighter Princess" is now VERY SICK. Lizzy has a sinus infection. A Bad one. We took Lizzy to see DR. Hough about 3pm yesterday. I dont know how she is going to tolerate more bipap with a sinus infection. So far no extra bipap time will she tolerate except for her normal over night times.
We are hanging out watching movies and reading her Fancy Nancy books over and over . She is miserable. She started Zithermax yesterday. She has a slight fever and both eye is swollen and VERY RED. Blood in her nose and feels like crude. Laying low. She said she had a headache Sunday she said on the way home. Her O2 is pretty good not dipping past 97 but her heart rate is a little higher than normal
 
I have increased treatments to every 3 hours and have her on her miracle formula breast milk , tolerex and water.
 
We have a trip next week to Kentucky and I pray she will be better so we ca go. She is looking forward to seeing MJ and see a few of her friends.
Keep Lizzy in your prayers!!

 

August 29th, 2008
 

Lizzy went to a minor league baseball game(Saturday) and Reed Michael's 17th birthday party. (Sunday).She has had a great SUMMER. One more big trip  to Kentucky and one to Chicago and we will probably be home bound till after winter. She has even been shopping at Walmart! She even had pictures with Senator Rutherford and met him. 
 
Lizzy had a great visit with Dr. Schroth and the Muscle clinic staff. She is very happy to see how great Lizzy is doing. We did fasting amino testing to see how Lizzy is doing and any diet changes. They took 10ccs of blood for that and some other testing DR.Schroth ordered. Lizzy's movement is increased a lot in the passed 6 months. It was over all a GREAT Visit. One of the best ever. Her curve is at 20 degrees and that was still not bad they said but we are watching it close. Lizzy is always wiggling some how so the nutritionist Erin said she thinks Lizzy is burning a lot of cals from all her movement. She is on the high end of cals for SMA but doing great. Still a peanut but she looks bigger than she is. They did her weight twice because they did not believe how much she weighs. They all said she looks great, sounds great and moves great. Lizzy went to MDA lock up in Peoria and had a great time yesterday . She had pics taken with the UAW union President Rick Doty and Jonny Rovatti (Magician) . She stole their hearts .
 
The MDA Telethon is this coming Sunday!!! She is so excited!! She will be aired on WMBD.
She also gets to see her friend Sophia from the Chicago are and staying with her Grandma Pat soon. We also have a trip to Kentucky and get to see lots of Lizzy's friends.This has been a great summer for Lizzy!!
Lizzy is getting her Max Easy (manual ) Chair size 2 FINALLY HOPEFULLY. It may take a few months but its all working now. It was ordered for her almost a year ago and  hopefully it is finally getting taken care of!! I got a call from BL on Tuesday and Lizzy gets the last one. John our National seating is getting it for Lizzy. BL is hoping to get another company to build her the frames but at present Lizzy got the last one since hers was ordered over a year ago. So, I can give back the loaner ones we have from Laura .  Lizzy needs her own. Other kids can use them that have such a tough time like us getting one like we have. Laura is such an awesome lady at SMA Support. She has done so much for Lizzy and many other kids.
 
Things seem to finally to be falling in place finally. Now just trying to get a lift for the van . Papa decided we needed a newer van so we traded in the Kia Sedona about a month ago .  The great thing is the interest rate is so much lower than the Sedona was. We put a lot of miles on the Kia. So we got a Dodge caravan and the room in it is unreal. We can not afford a conversion van for gas reasons but I think this 2006 dodge caravan is just what we needed. Hopefully we can get a lift. I knocked my back out lifting it on WED again trying to help Christen getting it out of the van.
We fly to CA in October 7 and are staying an extra day because the flights were 100+ dollars for that Wed . so I decided that staying a day longer is cheaper than the  tickets a day later. We are taking a late flight that Tuesday.  We can not wait to see Molly and Andy. They live close to Stanford.  They are just the sweetest couple!! We are actually are more looking forward to seeing them more than the appointment with DR.Wang.
 
This is the best summer in years!!
Now Christen and I are planning on dieting next week.
Hope you all enjoying your summer.
 
I just saw an email from a friend that we lost another child to another horrible disease.  I did not know them but it pains my heart to hear of this. May God give this family strength to get through the days ahead. Fly high little one fly free of disease. Breaks my heart

 

July 5th, 2008
 
Our 4th of July was great.  Hope yours was too!! We went to Dawn and Jeff's at her lake house and had a cook out.  Lizzy had a blast.  Many family members were there. She went all over in her power chair. Lizzy did great!! Caitlyn was on her 4 wheeler and scared the "be jeepers" out of me many times. Lizzy hated the fire-works. She said "They smelled" Leave it to Lizzy to say that. So her and I went inside and watched them on TV.
 
Papa is not walking to well today. Injured himself playing softball. Lizzy told me "He hurt himself and he can not walk"
 
Its been a good summer so far. Allergies have hit us a few times but over all Lizzy has been enjoying it and actually outside in her  power chair several times a week!!
 
Uncle Rory is supposed to be home tonight from Kuwait for a few days. Ariel has been here for a few weeks (his daughter) and has reattached herself to Lizzy.
 
Hopefully next week is the  LAST week for serial casting at Easter Seals. The cost of gas every week is draining us!! Lizzy's foot is doing so much better. The right one is awesome (+5)and that cast has been off for a three weeks.
 
Sophia Doebbert is sick and her Mom Andrea is also sick Many prayers their way.
 
Many Prayers to all the sick kids!!
 
WE will not be going to Stanford again till October.
 
Have a great summer!!!!!
 

June 17,2008

 

We are feeling great after weeks of being sick!
Lizzy has a busy week this week. Easter Seals was Monday and she is finally done with one side but because of being sick and being over stretched we still have one foot still being serial casted . She is a +7 on her good side!!
Today we got Lizzy's Leopard TLSO today. It fits so good but boy has she grown since her last one!! We had a 4 hour MDA visit also today which was a great visit and everyone loves Lizzy !! We have two appts here tomorrow.
Lizzy is Ambassador again for the MDA for our area MDA (Peoria Area), so watch for her on Labor day weekend!!
Bad news I hate to say but we so far can not get help with our fights to Stanford. Mercy Med flight can not help us. I am trying so hard right now and I have a pilot trying to help that is a great guy I emailed. Please pray something pops up or Lizzy will be off her med.
If we had only known we could of had fundraiser or something. It's totally consumed me trying to find resources to help us. So, I have been talking on the phone or sending emails or researching since last Friday! We have to go to Stanford!! 
Lizzy has to stay on the hydroxyurea!  I don't know if she will lose the strength she has if she is off of it.
Many hugs to all and hope you are enjoying the great weather this week.
Prayers for Jacob Goodson!! He is in the hospital again!! Prayers for my brother-in-law Jim who has been very ill!
Pray we find a way to CA for July and October.
 

April 27, 2008

Hello Every-one!!
Sorry no updates for awhile. Let me breathe deep for a second and tell you what has been going on with Lizzy and us.
Great news MJ PURK is FINALLY home from the hospital!! Yeh MJ!!!!!!   Addy is home too and so is Sophia Doebbert!!Yeh!!! 
Rachael my grand-daughter has been having some problems. Liver enzyme problems  and blood in her urine. So prayers her way. They have tested her and one week she is fine and the next week she has problems again.
I have been having some health issues myself but it minor compared to everyone else.
 
Poor Ethan was just taken to Yale. Poor little guy!! Many prayers his way!! He just go out of the hospital,
 
Lizzy has been doing good (No jinxing here.... actually saying how well she has been doing. ) She is such a smart, brave, beautiful girl!!  She is my heart. Growing so fast and you never know what she is going to say.
She is in her power chair 5-6 hours a day most days. If you turn around to fast you might almost fall over her. She has figured out that the power chair is her way to get almost anywhere she wants!! She wants to go upstairs in it but I dont think we will ever be able to afford a lift for her to do that. She is quite talented and maneuvering
her chair. She is pretty good at judging distance .
She has been getting serial casting done on her feet to prevent future surgery (Hopefully).
She had her IEP on Thursday and we have decided on home-schooling . I am going to do it. Scares me to death but.... I think I can. The illnesses out there are so scary and RSV this year was way worse then ever before and still many cases of it out there.  We just did not think it safe either since they pit her in class with kids with behavior disorders. Couple close calls last year. I have been searching and trying to contact IL parents and organizations that home school for the best possible material out there. I want her to have a a Christian influence also in her studies. I am excited to experience this with her.
We are finally getting our kitchen updated for Lizzy. So she can get in and out with out hitting the door way. Getting more cupboard space and a new floor. What a mess.  I had the materials for over a year and they are finally getting it done!! So its kind of crazy around here with half the kitchen floor tore up and part new sub floor in. Slowly but surely it will get done.
 
Ohhhh yes!!  Last weekend we got to meet Steve, Laura and Kaylee Stants. It was so great to finally meet the lady that helped me save my Elizabeth. She is such a great lady!! She is beautiful kind and simply amazing!! 
Hopefully Spring is here !! God Bless!!! 
Hope all is well with you all and have  a great Spring/Summer!!

March 10, 2008

First thing I want to say in my update is please say prayers for our friend MJ. She has been in the hospital 6 weeks now. She sounds like she is doing better but MJ please hurry and get better we miss you.  While saying prayers almost every night Lizzy keeps asking "why is MJ still in the hospital" . I keep saying she is still sick. Lizzy says" MJ has been sick a long time and she hopes she gets better soon". She said "tell her take medicine." You are our hero MJ and we need you to get better !!  We Love you and we miss you!! We miss Brenda too!!
 
Elizabeth was sick last week with fever and plugging. She is doing a lot better. We had her on Zithromax for 4 days from Dr. Schroth. She improved quickly with treatments every 3 hours. 
 
We had went to Madison for a Feb. 29th appointment with Dr. Schroth and it went very well. Lizzy is still a peanut but I guess that is just Lizzy. She said" Lizzy  has had more expansion in her lungs and is doing great"  She measures her chest and check Lizzy very well.
Lizzy drove her chair up and down the halls and to the gift shop.
 
Lizzy got a lap top last week and we are working on getting her a mouse. Her whole world will change.
 
We can not wait to see Molly and Andy in CA!!  It will be great to get away after the long winter we have had here. I just pray Lizzy stays healthy before and while we are out there and home. She got her last RSV shot for the season today.
 
Keep us on your prayers this week for a safe trip to CA and back home.
 

Feb. 15, 2008
 

Its been a crazy winter! Flooding , freezing cold weather and snow. Twenty-five percent of our town flooded in Jan . Then 3 weeks later another flooding but not as bad.  We were lucky we only got a little water in the basement that went straight down the drain and some dampness.
 
Lizzy has been sick a few times this season. She has had  plugs, junk in her trunk but over all the best winter yet.  Believe it or not.  She did run a fever because of an ear infection a few weeks back but nothing I have not been able to handle at home.  We live in our " winter bubble" We stay home most of the time.
 
I actually got sick last Friday and left town with Paul for the week-end.  First time in many years.  Only place I had been was VOTING (a week ago Tuesday)  a block away since the first part of January!   I woke up with a fever on Friday last week  and sore throat and got the heck out of Dodge.  I have not left Lizzy since Paul had a stroke two years ago. It was hard to leave her but getting Lizzy  sick would of been worse. Paul had a conference for work in Iowa. I was not much company though but I did get to rest. We were back Sunday but I did not get around Lizzy much until Monday. I was totally fine as of Monday.
Many for kids we know have been in the hospital with RSV and MJ is still in the hospital with the flu .  MJ has been so sick we have been so worried about her.
Sophia Doebbert got really sick with RSV and  was in the hospital in Minneapolis,MN and was life flighted to Madison.  It was a so scary for her and the whole family. Dr.Schroth and UW hospital PCIU  worked their magic with our favorite nurse Pat and Sophia is now home. Addison was also there also with RSV and home now.
Emily, Kyle  and Jenna  also have encountered RSV this season and I do not remember how many more.
We are "home bound " from public places from October-March every year now to keep Lizzy well.
 Christen canceled our trip to Stanford first part of February because Lizzy was not base-line and she was afraid she would catch RSV or the flu since it is the peak of the season.  Even though Lizzy gets a RSV shot she can still contact RSV but not as severe.
Its been the worst year for illnesses. We will fly out March 13 to Stanford.
 
Lizzy had a great Valentines Day. She loved all the cards she got and Andy and Molly sent her a DVD. They are such wonderful friends. We can not wait to see them. 
 
Lizzy got cards from all of the US and Canada.
 
Many prayers to ALL the sick kids !
 

Dec. 14, 2007

 
Elizabeth has been doing pretty well since  her last illness. It took many weeks to get her back to base-line but she did it!! What a fighter she is!!
She is enjoying the holiday season. She did get two trips out shopping and she dearly loved it. She went to a Christmas program tonight for cousin Robby and absolutely loved it and sang with the kids (in the bleachers watching).  You hear Elizabeth singing on the video we did tonight. LOL . She has been getting excited at the gifts coming in the mail. A few very good friends have sent her wonderful gifts . She gets so excited when she gets something in the mail. We have also got Christmas cards from all over the world with some pictures! She loves everyone and has to hold the cards for a while and ask questions about the kids then she lets me put the cards on the archway. She doesn't miss a thing!!
She started serial casting and so far has done very well with it. I was totally shocked at the results. Her bad foot is no longer puffy and she fit right into her AFO's. Amazing. She takes them off the Sunday before the Monday new casting but last week the weather kept us from going so she has had them off a week but will start again on Monday.
We are still fighting to get her RSV shot. We travel to Stanford in February and she needs the shot before she goes. DR.Schroth and DR. Hough have both sent letters in and we are waiting to hear again if she got approved or not.
I need to thank the people that have helped us sending supplies when we were in need and all the offers to help with more OMG.  Thank you. Truly you are wonderful and thank you so very much!!   Peg Senator's Rutherford's asst is so great at trying to help Lizzy get what she needs.
You are so good to Lizzy. Never in my life have I met more caring people.
Well many prayers for the kids that have been feeling ill or had surgeries.
We are truly blessed to have Elizabeth in our life . She is just the coolest kid.
Thank you all  so very much for being in our life.
Merry Christmas to you all and have a Happy Healthy New Year.

 

Nov. 16, 2007
 

Elizabeth has been sick since  Nov.2.  She had " croup" and it was terrible. I believe she picked up the virus from school.  I did round the clock treatments until Tuesday this week. She had mucus plugs every day almost. I had to do mouth to mouth on her the first night because she could not breathe during a treatment because she had so much gunk in her throat. . Got her to cough with her cough machine but she scared me to death.  We got her on Zithermax right away next morning. She had no voice for about 4 days.  I had her every 3 hour treatments until last week-end  and extra bipap.   Then I  was doing 3 treatments during the day. Thought she was well  and  then spiked a fever yesterday. Took her to DR. Hough and she has middle ear infection. She is such a trooper. She is doing better today but she has had a heck of a time. Welcome to winter in IL .
I also learned that when she can not breathe like that  to put the cough machine on exhale and it also blow breaths in her. No O2 was needed. We got to stay at home . I actually handled it. I did not sleep much. Thank goodness for the IPV and Elizabeth's strength. She has not been this sick since March 2005.
 
The state is still denying Lizzy's RSV shot. She needs this shot and I have contacted my senator's assistant again.  Peg(Senator Rutherford's asst) said she is waiting to hear back from them.  She fights so hard for Lizzy. Dr. Hough has tried so hard to get this for her too. Christen contacted the company and I have data now for the shot over the age 2. I hope this helps. We have letters of medical need and still they say NO!
 
We are trying to get her a manual chair since she has grown out of hers but we are not getting very far.  I guess the pillows in her manual chair will have to work until she is 5 if we can not get her one. I am still trying though. The Max Easy  size 2 would be the best one for her. No vender in our area will even try to submit the order. I have been talking to BL with Exomotion and she said hopefully she can help us find funding after its denied at state level.
 
Elizabeth was suppose to start serial casting for her bad foot but.... we had to cancel due to her illness.
 
Elizabeth and I have not left the house except to see the doctor.
 
Many prayers for all the sick kiddos and a Great Job to Jennifer Goodson for her great doctor visit today. Its great to prove to local doctors how great these kids can do. It renews their way of thinking and a "glimmer" of hope hits their hearts.
 

Oct. 08, 2007

 
We are home from Elizabeth's last trial visit to Stanford. She has completed it!!!  It took a long time but she finally did it!!!
We will continue to see DR.Wang every 4-5 months.
The trip started out with drama when Christen some how forgot the cough asst mask when wet the airport over 100 miles from home. My fault also because I should of checked myself when she said she had it. So Christen calls Apria in Peoria,IL and they sent her call to our  Apria RT . She proceeded to tell Christen "That the machine was purchased and they would not get her a mask or call out to CA to help us get one". "Christen said" I will pay cash for it  or bill me" and the RT says "NO... They would not help us even though this is a" life threatening situation" Elizabeth has to have a cough asst mask no matter what.  Christen said "you are telling me that you will not help Elizabeth and we are just "Screwed". The RT from Apria said" Yes... That it was your fault for forgetting it and"  NOPE" they were not going to help us get one and we could always  switch to another medical  supply company" . She said" she didn't care if we found another medical provider". Oh my..... what we have to deal with when it comes to Elizabeth's medical needs is just uncalled for. RUDE, MEAN  and UNCARING people in the medical supply companies. It just is not right. SMA kids  parents/caregivers all over the country have to deal with this kind of treatment and its unjustified. These kids are the bravest, strongest  courageous most beautiful children and they have to fight to live.   Granted it was a mistake we made but the RT's attitude was unethical besides rude. It took over a year to even get someone to take her case to get Elizabeth the machines she needed. Thank goodness we have one person that understands Elizabeth's needs and that is Jerri from the Streator Branch. She happen to not be in that day.
 
Christen called Stanford talked to Virginia. DR.Wang went and found DR. Ewing in ICU at Lucille Packard and told her what we needed and he got us the 2 masks some tubing and a connector. The Man is a Saint!!!!   He understood Elizabeth's need. OMG... He is the "Bomb" Thank you DR.Wang!!!!! 
Molly and Andy our good friends that picked us up at the airport picked it up before we landed in San Francisco!! They were so wonderful to do that for Elizabeth. They are the best!!!!!!
Elizabeth did great on the plane and almost the whole trip .
 
The doctors visits on Thursday went good. The Mune test with DR.Soo went good. Elizabeth was her usual ornery sweet self. She is almost 24 pounds....... whoooooo hoooooo 23 pounds 8 ounces...... she is almost 39 inches tall also. She laughed at DR.Wang and we told him stories about her and it was a great visit. He would laugh at her and she would smile and just be her charming self. She kept showing off of course. The blood test though is never easy for her it causes her vasovagal. DR.Schroth told us what it was called when it happened at UW in August.
 
We met with Gracee  on WED  night, Jacob on Friday morning and Ally at the Olive Garden on Friday. Ian was there also on Thursday and was so happy to see Lizzy. Her and Ian like each other and played together. Ian got her this cute doll that Lizzy has not put down since with a pink leopard skirt.
Jacob got Lizzy a doggy bracelet(Cute as heck)  and some beautiful Dora "Genie" Pajamas.
 
Molly and Andy had a party  for Lizzy and  lunch on Friday afternoon. They are so great to us !!  We just love them. They got Lizzy a puppy in a  pink cloth cage with all kinds of things like small pillow hair dryer, cell phone and a lot of accessories .  So" girly " so Elizabeth!!  Elizabeth loves it!!  They had balloons for her and a gorgeous table . The pasta salad  Molly made was to die for. It was fantastic. Then we had to go back to our room hurry and get ready for Olive Garden with DR.Wang and some of the families in the trial. That was interesting. It was good to talk to DR.Wang out of the office. I did not do much talking but I did ask him a few questions. I did comment a few times.  I  was much  too interested in the Ally, Jacob and Lizzy . I just love these kids.
 
DR.Wang was so great and so happy Elizabeth is doing so well. I am glad we will still be seeing him.
Molly and Andy took us to the airport on Saturday to fly home and it was a great trip till we got about 10 minutes from home in the van and Lizzy's had gotten a plug.  Poor Lizzy. I got it out and she has been doing okay but  she has some  junk  still coming out of her (white) and has been doing pretty good since that . I am glad we are home today just to RELAX!!
 
She is right now licking "Pop Rockets"She loves them thanks to Jaime her OT.
 
Thank you to all the remembered her 4th birthday. Every birthday is a milestone for her. She is just an amazing kid that her strength,  courage and determination keeps me going. You all made it special for her also!!
  
Elizabeth's party here was the Saturday of her birthday Sept. 29 at Mario's with Pizza and cake. It was a "Fancy Nancy"  party with about 50 people.  Ingrid (Paul's  sister) her boyfriend Terry , then  Katherine(sister from Germany) and her husband Winfred from Germany showed up with all kinds of stuff for my princess.  Oh my gosh I was so touched by the love in their eyes for Elizabeth. That was such a surprise!!   I was  so glad to finally meet them . They are so kind and caring!! The Baxter's are so good to Lizzy and they are my oldest daughter's inlaws.   It was a great party. Lizzy got so much stuff and had a magical time!!
She also got some packages at home when we got back from CA.
 
She is 4 years old what a milestone for her.
 
Prayers for  MJ, Sophia Doebbert, Kaige Dunham, Kaiden Wills, Skylar S and ALL the sick kids !!!!! 

September 21, 2007

 

Its been awhile since I updated. Lizzy had some allergy issues last week but she is fine. She loves school and is growing and doing well.

She had 3 pages of blood testing in Madison ,WI and the test were all normal. She fasted about 5 hours and they took 10ccs of blood. She is a bit low for Carnitine but every thing else was great. She has not been able to handle an upped  dose of her Carnitor but I am trying so hard to get her get to handle a bit more.
 
Elizabeth will be 4 years old in a week and a day!! She is getting so big. She has truly changed my life and my way of thinking. Nothing in this life is that bad knowing what she goes through on a daily basis. Her strength and determination exceeds any expectations any of us had for her. She is a my hero, my strength and my heart. She is a great kid and has so much love to give. She is an amazing little girl.
 
I hit some more brick walls . Our local pharmacy that supplies Elizabeth's Tolerex has decided she can not get her Tolerex there anymore because they are not getting paid the amount they need from Elizabeth's insurance. So, we are taking other routes hoping to get it from the company that does her feeding pump supplies. They tell us this after we go to pick it up.... Good thing we have  a bit extra to get us through until we get this taken care of. My advice is always have a extra of everything for times like this.
The state decided to bump the RSV shot back a month so I had to contact our Senator's asst and try to get this  taken care off. Why is it so hard to get these kids the things they need? Its always such  a struggle. Its like you take 1 step forward and then two steps back. WHY? Its emotionally draining and so frustrating to always have to deal with things. I wish I would win the lottery. I would give these kids everything they need when they are pushed around and messed with from all the political hog wash. Its not fair.....
 
Trip to Stanford is the 3rd and home the 6th. of October. The VERY last one for the trial. I know we want to keep her on the trial drug as she has done well with it.  Now  just figuring out a way to do that.
Many hugs to sick kids, many happy birthdays to those with birthdays and many good thoughts to those families with Angel days and Angel birthdays.  
 

August 24, 2007

 

Well our great summer is coming to an end. We have met so many great people, seen so many relatives , went so many places and its been the best summer Elizabeth has ever had. I can even tell you how many great people we have met!!
A special thank you to Molly and Andy in Palo Alto, CA (Sophia Doebbert's great Aunt and Uncle )for picking us up from the airport, going to Lizzy's appointment with us , taking Christen to find a inverter for our Marine battery so we could fly home safely with Lizzy on Bipap , dinner and then taking us back to the airport. My gosh you two are the best!! We so happy to know you . I could not even begin to thank you for as much gratitude as I feel because I would never stop thanking you!!!!!!!  Special thoughts and thanks to Tony and Pam also. The lawyers from New York that were so kind and help us so much !!!! I can not believe there are such kind people out there. The whole time we have been flying there has only been a few people that even taken an interest in what we do and Elizabeth but this last trip we met two very special people besides Andy and Molly . One time Mark a friend and neighbor to Molly and Andy picked us up and that was also so great and we thank him also. No one knows just  how much it means to have people actually go out of there way to help us when we fly to CA.
 
The  UW Muscle clinic appointment went really well. DR. Schroth was amazed at Elizabeth's  strength and said she is getting stronger. It was great to know she thinks we are doing a great job with Lizzy. It was our best ever visit.
 
Elizabeth started getting sick last  Saturday with higher heart rate. Then on Sunday she dropped to low 90s O2 and woke up with 102 fever. Her heart rate was so high. I got her on an antibiotic from DR. Rock (UW) but her fever and high rate continued all day Sunday but finally dropped on Monday. She had every three hour treatments around the clock until Tuesday night. She still has some junk coming out but  overall she is doing very well. O2 has been great and so has her heart rate still doing extra treatments during the day .
 
Bernie our good friend from Canada has been sick and in the hospital so many special prayers for him. We are lighting a candle for him and saying a prayer at:
 
Next trip to Stanford is Oct. 3rd and our appointment is the 4th. It will be our last  one in the trial.
 
If we have to keep on going out to Stanford every 3 -4 months like Dr. Wang wants I will have to get a job .  Its not that I do not want a job its that I worry about Elizabeth's care. I have been doing most of her care since she was really little and I worry too much about her needs.  No one knows  Lizzy like I do but you have to do what you have to do so we can pay for her office visits and her medicine.  
 
The MDA  telethon is next week-end and we are all excited about that !!
 
Hope everyone had a good summer as we did!
 
Its been raining and storming here all week. Lots of flooding around us.