You're Listening to The Climb by Miley Cyrus
February 27, 2011
Lizzy called her Uncle Calib for the third time this week this morning.
" Please Uncle Calib let me meet the band Perry Please Please I love
them so much!" Then she says " I love you Uncle Calib!" I know she got
to my heart I am sure she got to his too. He does security for
celebrities in our area. He was security for The Band Perry. He made no
promises but we got a call this afternoon from him and He says "Be here
as fast as you can I got you a private meeting with The Band Perry!" Oh
my!! I wanted to cry! he hooked her up!!
September 7, 2010
Life is good. Every just think to yourself, " life is good?"Things are
better? Then, take a big "sigh" and say "Oh yeah" this is what its all
March 12, 2010Its been a very long time since I updated Elizabeth's web-site. I apologize for that. It seems I do not have a a lot of time online to actually sit and write these days
Lizzy is doing well right now. We had a awesome doctor visit with DR.Schroth last week. Lizzy also had pictures taken for the book UW is working on for neuromuscular diseases with her machines and some of her equipment like her knee immoblizers etc. Lizzy is a whole 34 pounds now and has been since her last wellness check in Feb with DR.Hough. Which also was a great appt. It gives you a great sense of relief to know what you are doing is working.
Elizabeth had a few sinus infections/ ear infections this winter but nothing that we could not handle at home. .
We have also went through many breast milk donors this past year and THANK You so much all of you Moms that helped us keep Lizzy on 20 ounces a day of breast milk a day. You kept her healthy and doing well. She is just doing awesome and one reason is because of you!!
Lizzy had a small benefit in Jan that some great ladies had for her.Some money has helped with some of her appts with Myofascial release with Linda in . Its costs $65.00 a week but Lizzy is doing well with it so we can not quit . I also pay for some of the appt too but not as much as I did. Christen and I are learning to do it . I also myself use it on Lizzy every day.
We just got approved for OT and PT through Easter Seals!!! Its been a whole year since Lizzy had it besides the Myofasical and what I do at home. We are excited because she will back in swim therapy AGAIN!!! That is such great news,
We have a few trips for this spring/summer. We will be going to CCK April 16th in Kentucky, Trip to Stanford and hopefully the FSMA conference in California( YES WE HAVE TO DRIVE) and a trip to Minnesota to stay with some great friends of ours that invited us to come in July so we have a VERY busy summer planned.
I do one to say one thing in 2009 we lost several babies/children to SMA and it hurts my heart to know this. Many we did know. We have to find a cure in 2010 to save these babies. I feel it coming soon.
Paul is at the top of his class and doing GREAT, He graduates in October. Still things are tight around here but they are getting better.
Many prayers to ALL the sick kids and recovering kids from surgeries!!
August 21, 2009
Finally... we are done with our trips. Awwwwww.... we made it all summer with out any complications. We have been from IL to Ohio and back. From IL to California and back, We have been from IL to close to Minnesota and back and two trips in less than a week to Madison. All safe trips and home safely. Only issues were my fall, Christen, Lizzy and I with allergies. I can actually say I am on a diet as of TODAY!! So, much great food over the summer we enjoyed traveling. We have been with so many great people also. I am glad I am finally home getting back in the swing of things again.
We got back yesterday from Madison. Lizzy had her yearly Muscle clinic visit. Her curve has not changed in 6 months!! No surgery yet(and the crowd roars). DR.Schroth said Lizzy is doing awesome. DR.Schroth is changing NOTHING. Lizzy is doing great.
Gaining weight, healthy , Growing, no Respiratory issues. Life feels pretty good right now with Lizzy.
We are suppose to go to the MDA telethon in Peoria labor day week-end but this year we have to pay for out of pocket for own motel rooms for the first time. I guess the MDA is not helping with that this year nation-wide. With out knowing about that expense till now(today) for two motel rooms I am not sure if we will be able to stay over night. Paul is not working yet and we are barely getting by. We may go for a few hours on Monday.
We are not quite understanding why there is no MDA fill the boot here this year. It seems since the reorganization/ merging areas together of The MDA its been hard to get out there to all the areas.
Lizzy needs new AfOs since she has grown so much recently.
We need to figure out a way to get her swim therapy(even it is paying out of my pocket), OT and PT. Any body have any ideas? Easter Seals will not return our calls in Bloomington, IL . We started calls AGAIN today to them leaving messages. Lets see if they respond.
Its almost Fall. Its been a great summer and basically illness free. One sinus infection for Lizzy in June and I think that is about it.
Any one know of any maintenance Mechanic Jobs please tell them about my husband with over 15 years experience!! WE will sell our house and move but not too far from DR.Schroth in Madison. IL Chicago and central IL is good place for us to move but we do not want to be to far from DR.Schroth as I said. He had a great work record and has a UAW journeyman card also. No one seems to want to hire him because of his age.
We need insurance for him and I!! His meds are breaking us!! He needs a job badly!!
We met a newly diagnosed baby in Madison named Nora. She is 5 month old and from Tennessee She is so cute!!
Many prayers to all that need them .
We believe in miracles because we live with one!!
July 28, 2009
We got home Sunday late evening July 26th. We left home July 16th. It took 4 days and 3 nights to drive to California and 4 days 3 nights to get home.
You always like to think about how great a road trip would be until you are on it. I kept thinking what an adventure it would be for Lizzy. It was for her. It was long and hot all the way there.
On the bike it was great not so many years when Paul and I would just take off and go.
Never in my 51 (yep turned 51 last week) years of life did I ever imagine driving 2130+ miles one way with a child and myself sitting in the back seat of a van. We were carrying 200 ounces breast milk there and trying to keep it frozen, a power chair, food to eat on the road 7 days worth of clothes and all the machines, supplies and everything we needed to keep Lizzy healthy. If this trip was not "a have to" thing we would of never went but Lizzy had to go and you do what you have to do for your kids. After we hit IL on the way home I got this overwhelming feeling how glad it was to finally be almost home. Then when we pulled in the drive I wanted to do nothing but go get in my own bed. "There is NO place like home"
DR. Wang told us in his outcome on his trial results that kids on the Hydroxuerya have a 250% chance of surviving over the age 2 than kids with out the med. Wow, the results gave me goose bumps. He has to do one more study for FDA approval since his test study patients were so few. He needs about 3 million dollars to do this. I would love to see this med get FDA approval. So, many the kids that could benefit from this med. NIV protocol and diet and so very much important also.
DR.Wang spent a lot of time with Lizzy and was so excited to see her. I have never seen him like this with her. He was so happy to see her and just kept raving how great she was doing. She has gained 7 pounds since last October. He kept saying how great she looked and how great her complexion was. He asked her to reach for her mouth and she did with no problem. She keep showing him all sorts of stuff. Like how she can roll over pick her legs up, rock back in forth, roll to one side etc. He was stunned. She talked to him but not as much as she did Jonathan the coordinator.
The Pharmacists that have been working with the trial came out to see Lizzy. They have known here since she was 8 1/2 month old. They told her what "a Star" she is and that she made DR.Wang "a star" . Total admiration for her. Lizzy is quite a miracle. It makes the ride to CA that was not so good seem quite worth it . They got to see her also in her power chair.
We got to see the Calafiore's !! I was great to meet them. Hayden looks great!! Lizzy fell in love with Jennifer and Hayden. Chris is such a great Daddy also. It was very great to see a newer family that really is working so hard to help their daughter. They fed us dinner!! It was great!! They are so cute
We had a great time with Molly and Andy. They had us over a few evenings for dinner. A cookout one night and lasagna the last night there. They have a friend that is a chief that made a chocolate torte "that was to die for" it was great!!! He also made a great lasagna. They treated us to the museum in golden gate park (the aquarium part that Lizzy just loved) and lots of great conversation. It always so nice to see them. Paul finally got to meet them and he loves as much as we do. Every night on the road Lizzy would say where is Molly and Andy at!! She wanted so much to see them. They finally got to see the "Real Lizzy" and how ornery she is.
I had an accident a day after we got to CA on Monday the 20th. A bad one... Lizzy and I were in the parking lot at the motel. They have murals on the wall that I wanted her to see. She was in her power chair and I was walking on the side of her with her suction machine. So, I turned and said "Lizzy turn this way and look " well..... she clipped me some how and I fell over her power chair on top of the suction machine. Lizzy is no way was hurt it was me. I hit my face on the pavement (big ol bruise on my face and a eye) . I have bruised chest and side. I still hurt very bad. It was not Lizzy's fault. Paul had turned up her chair to 7 and I am not at all used to her with those higher speeds. I have no insurance anymore so if I do not start feeling better by Thursday I will call DR. Hough. My face feels better but my chest and side still hurt. I have been taking Motrin and a pain killer at night.
It was quite an experience.
Thank you for all that help us get to CA, home and helped us while we were there. Your support and prayers means so much to us. We are home and Lizzy did great. It warms my heart to think how so many cared so much about Lizzy to help us get to California and home safely.
Elizabeth is truly a wonderful kid and so full of life. I taught her at a very young age "You can do anything you want to do some way some how."
As Lizzy says " I love you all from my heart to yours"
"We believe in miracles because we live with one"
Many prayers for the Panno family. Our neighbor Frank lost his son John while he jogging last Thursday. John was a year older than me. So sad to come home to this news
May 24 22009
Oh, my goodness I actually
have a few minutes to update.
On May 11, 2004 we
learned the cause of Lizzy’s weakness and our lives changed forever.
March 29, 2009
We are back from Lizzy doctor visit in Madison,WI. Lizzy has seen DR.Schroth since she was about 8 months old. I have to say it was one of the best trips we have taken to Madison and doctor's visit. Dr. Schroth was excited Lizzy was doing so well and HER LUNGS WERE COMPLETELY CLEAR!!!!!!!!! Tens day of around the clock treatments paid off. She was so VERY SICK. She has not been this sick since she was 17 months old. I could of not of done it with-out Christen's help. I was very drained after my illness and we worked together every 2-3 hours around the clock. DR.Schroth did say she probably did need to be in the hospital since she was so sick but.... we did a great job getting her well. I do not recommend staying home if your child has influenza. We live over 3 hours from Madison and our area trauma center could not care for her. If Lizzy could not of remained 94 o2 on bipap or we could not handle the every 2 -3 hours treatments around the clock we would taken her to Madison. Lizzy begged to stay home and she promised not to fight the bipap.
Elizabeth is 27.1 pounds 41+ inches long(The crowd roars) !!!! She has gained even during her illness!! Shocking considering she was only on donor breast milk, tolerex and pedalite for two weeks with her supplements for two weeks. I am shocked, stunned amazed and thrilled. I was making 1000ccs of her formula at a time using 20-25 ounces of breast milk, pedilite and 1 pack and 3 tablespoons tolerex. I tried putting her back on her regular diet of 16 ounces a day of breast milk, Baby food and tolerex and water and she was having issues being choky so I put her on back on her miracle mixture. She had diarrhea for days and lost no weight. She actually gained!! She has had no tummy issues on this mixture. My theory is that they work more being ill and need more calories but with a formula they are able to absorb. I guess it worked well! These kids do so well with breast milk. It amazing how well they handle the fat in breast milk.
Lizzy has had amazing chest expansion also. DR.Schroth wanted to re -measure her because she had such a huge expansion since last visit.
She has not lost any strength with this illness even though she was off her Hydroxyurea for days. She is reaching her mouth again also.
Her Scoliosis is worse but not by much. Maybe 5 degrees more. Not sure how much the Ortho Doc has to see the X-rays. She was also not laying straight for the Xrays so we will probably have to retake them. She is in the up right position more in her power chair and has grown a lot over the past 6 month. She also has not been in swim therapy since March 5. DR.Schroth is going to call Lizzy's PT Monica this week and explain to her WHY Elizabeth needs swim therapy. So, we are keeping my fingers crossed that Monica will listen and understand. Lizzy needs swim therapy so badly.
Lizzy is back to base-line as of yesterday and I am so happy. I was so worried she was not going to be as strong after the influenza she just got over but she is !! Her O2 level is satting 98-100% and her heart-rate is normal.
Lizzy is such an great kid. Her strength and attitude is simply amazing.
We got to see Cory, Katie, Avery , Aubrey Poole, Doug, Andrea, Sophia, Lila Doebbert, Grandma Judy Bowles, DR.Schroth and Lisa(her nurse). It was so great!! They all looked great!!
Sophia just got out of the hospital after her back surgery. She looked awesome. We only saw her for 5 minutes outside of the Ronald McDonald House.
We spent a lot of time with Katie, Avery and Aubrey. We just love the Pooles. We had dinner with Cory, Katie , Avery and Aubrey on Friday after our appointment. Lizzy loves Katie and the girls so much she wants to move up there NOW!!! Lizzy kept asking "Where is Katie?" How come she has not called??", I really like her she is so nice". She was all worried about Sophia's Mom Andrea also. " Where is Sophia's Mom? " "Is she okay?" Lizzy is just too funny.
I have bursitis and its so bad I have not been able to lift much this past few days. Its in both arms right now and its extremely painful. You know what the heck else is going to quit working for me? I guess turning 50 is when your body starts falling apart.
Paul has been offered a few jobs out of the area In Chicago or Philly . He applied at Mecalux (Former Interlake) and they have not called him in for an interview or sent him a letter telling him to report to work. So, I guess we may have to move.
I pray we dont.
Many prayers for all the sick kiddos.
Keep us in your prayers!!!!!
February 14, 2009
Well, its cold here with snow again.
Mother Nature teased us last week with nice weather for few days.
We fly out to Stanford March 10, 2009 to see DR.Wang and see Andy and Molly.
Lizzy is excited to be seeing Andy and Molly as Christen and I are too!!
January 6, 2009
is doing better. She is back in her "Purple power chair" running all
over the house tormenting her mother. She just got over an ear
December 6, 2008
Its been awhile sorry. Lizzy is doing well! No illness since the last one.
Paul has been home this week on vacation and we had appointments all week.
Lizzy went to the mall yesterday. She has her face mask on the whole time except for her picture with Santa.
Well, we found out that my husband plant is closing down. He was told he needed to go down next week and sign up for unemployment from another co-worker. He was on vacation this week and it was needed even though we didn't do much. He has been stressed for awhile worrying about his job. Don't know if its permanent or not. Scary to think about how rough the economy is and then you get hit with it in the face. Wow... There is no jobs around here. He was offered a job part-time that will start in Jan. helping flip houses. If worse comes to worse I will just go back to work or we will move. I can do about anything and have been trained in several jobs and have college behind me. I will not be able to care for Lizzy like I do but you do what you have to. We will survive! We are fighters and survivors in this house!!
Lizzy learned how to use her communication device that was loaned to us.
Sarah Wilds from the PRC company got to meet Lizzy and showed her how to use the device. It was great. Lizzy caught on better than any adult she has taught. It was very exciting!! She used a track ball (Did fantastic) at the appointment and at home she is using the Easy Cat. She talks well yes but this also teaches her sounds and words also very cool!! Sometimes she refuses to repeat herself and she is hard to hear.
Lizzy got to experience her first time ever last week playing in the snow last week with her sled. It was great!! she loved it!!!!! She squealed in excitement. Pepper even pulled her in the snow!
Hope you all have a great holiday and keep a heads up. Things will be getting better in the future! Lizzy helps us keep a positive outlook around here.
Many Prayers to our sick friends!!
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
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!!!!
September 7, 2008
Please go to this site and sign the petition to help pass this bill. Help save these kids!!!
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
Here is the blog http://www.caringbridge.org/visit/lilieclark
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!!!!!
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
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.
Elizabeth will be starting school after labor day.
Keep Elizabeth in your prayers.
August 13, 2007
Well this trip was quite different than normal. We met a couple lawyers from New York at the Chicago Airport that helped us so much with Elizabeth's carry on equipment on and off the plane. Tony and Pam I think their names were. Just the most kindest people we have ever met on a trip. They had such good hearts and Elizabeth found her way to their hearts also. Hopefully they will keep in touch with us.
This trip was kind of scary at first (Due to the inverter) but the best time ever we had staying in CA. We were having problems before we left with the inverter that goes on Elizabeth's marine battery for her battery on board the plane. Well the medical supply company we use refused ......... yes .....refused to get us another one here and in CA. The medical equipment supply told us to go buy one. Like..... alrighty then.... Like we can just go buy one. We budget everything because of our trips to Stanford. Which...... a medial company that does not make sure they equipment works properly should be in deep trouble. Isn't their integrity involved? We had to buy one before we left IL and went on the recommendations of our Apria person. It blew (after checking it the the day before and it worked for 20 minutes with the bipap) WITH IN 2 MINS AFTER our plane was in the AIR. So, Lizzy had to fly with out bipap and she did really well. No drama at all. I was a basket case and kept hoping and praying hard she would be okay. We got off the flight she was still 98 o2 and resp rate was great and she was talking away. Got to Ronald McDonald House and I did a Pulmozine, coughs ,IPV and she was fine...... NO problems (Thank God) and next day Dr. Wang said her lungs are stronger than ever!!!!!!! Also said she is stronger than ever. Her weight has not changed much.
The TV crew were great. The ABC news reporter was so great. She had tears in her eyes as Christen and I told our story. We still have not seen it yet. We missed it Friday night and Saturday we were flying on our way home when it aired. I hope it was good. It was on the trial drug Elizabeth is on.
They need to do a TV spot about the brick walls and the non-cooperation medical equipment companies give you. They endangered Elizabeth life not providing Elizabeth what she needed to fly safely.
Andrea Doebbert's (Sophia Type 1)Aunt and Uncle adopted us!! They live in Palo Alto They are so great. Took us to their beautiful home for pizza, helped Christen find an inverter that would work with bipap that could afford that actually work and Andy (Andrea's uncle) rigged the inverter up with the next door neighbor so all we had to do was plug it in on the flight. WE LOVE THEM!!!!!!! They also talked to DR.Wang and asked a few questions.
Oh and we had great seats coming home....... and the inverter worked well that Andy had fixed up for Lizzy.
A wonderful trip. Great seats coming home!!!!!
Only thing....... DR.Wang is still making us come out every 3-4 months after the Sept visit even though Elizabeth is done with the trial...... He will not give her the med with out him seeing her. We have to figure out a way to afford the office visits and the med. Maybe another fund raiser?
My brother was here and took us out to eat yesterday . He had his wife and his inlaws with him. The inlaws are from South Africa. I love their accents..... Great to see him. Carlene and I got to actually sit on the patio and talk ALONE. It was great. I miss my brother and his wife Carlene so much. They left today..... We don't do goodbyes.... they just tear us up!!
Well off to UW tomorrow for out visit at 8:00am on Wed. We are always going some where it seems . We will be back home on Thursday.
July 25, 2007
Tomorrow Aunt Rita is coming here. She is flying here from Florida. She loves Lizzy.
We are so excited!! We have not seen her since Lizzy's MAW trip last October.
We have had Reed, Robbie and Rachael (Elizabeth's cousins) here a lot this summer and Elizabeth is just loving it.
Caitlyn had her birthday party last weekend at the Lake house .Caitlyn turned 5 the 19th of July (The same birthday as Nina) .Elizabeth just loved the party. We kept her pretty distant from the other kids and no one in her face or touching her. Elizabeth and Nina both got a little sun. Nina was sun burnt for 3 days!!
Lizzy is growing and getting stronger every day. She is so amazing. She talks more than ever and is so INDEPENDENT. She is such a neat kid. She has a will all her own. I watched her yesterday pick up something on the side in her tiger chair in the side and maneuver it all the way up so she could see it and put it in her hand. Simply amazing. I keep saying it because she is!!!!!
We started going to a community support group last night parents/caregivers of handicapped children that Lizzy's O/T Jaime has put together. It was great meeting other people who have faced some of the same things we have. We met and shared info , resources and cried.
Lizzy has done pretty well lately.
Our house is going through some major updates. We are putting in new walls in (Taking mortar and wall-paper out and DRY WALL IN) , painting and updating the house. Hopefully my new kitchen floor will be in soon too!! I do not living like this but when its all done it will be worth it.
I have not been online much because of being busy or at night Lizzy and I hang out upstairs while they work on the walls in the evening. Hopefully they will be done by this week-end at least with the living room.
Still no word on Elizabeth's ramp for the front of the house.
We were hoping it would be done before school starts but it doesn't look that way.
Dawn has her surgery next week. Many prayers for her.
Uncle Rory will be here in August too!! Too bad all of the family can not be here together at once.
Hope you are enjoying your summer! We have been gone more this year than ever. We have had so much joy meeting people and going places.
Many more trips in August too. Stanford, Madison WI and Elizabeth's MDA appt.
Many prayers for Anna (Demi's Mom). She called me tonight and she is having a hard time since Demi earned her wings in May. Its so sad. Demi was only 18 months old. My heart hurt as I tried to comfort Anna. I felt her pain in her voice when talking about what happened to her baby girl.
The decisions we make is what we think as parents as caregivers is the best choice for our child/grandchildren as we see and feel it. No one lives our life.... but us ....so no one knows what we feel but our-selves. Not everyone can live this life. It takes deep strength just for us to do what we do on a daily basis. Some people just can not do it. I admire several parents who have learned fast and "Got It". Others still are struggling with their thoughts and emotions dealing with this awful disease and never quite"Get it" .
I hate SMA and I will fight for Elizabeth with every strength I have. These kids are the bravest kids I know to live with this disease and still smile every day. Elizabeth has a wonderful quality of life and that is because she is such a amazing child and treated like a normal kid with special care.
I apologize if you have tried to email and I have not written back. I have been so busy and I try to stay off pc because I have not had the time to respond. This is only for a short time. We should be done with all this in about a week I hope. If you tried calling please try again.
I am here for any-one that may have questions about any thing. So call me or email me if you need me. No questions are stupid when living with a child with disabilities.
July 13, 2007
It's been a busy summer so far. Elizabeth has been to her first and our first FSMA conference and a SMA Family gathering in Ohio. We got to meet MJ in Ohio and got to meet so many kids this summer. We got to meet so many parents, Brenda(MJ's caregiver), Peggy( Nurse) Colleen (FSMA) and the lists goes on!! Its was just so wonderful to meet so many people!!!!!!!
We have met so many people and its has been great for Elizabeth and us also.
She did really well on the trips we have taken.
She has been pretty well all summer except for the week of the July 4th when she has some junk and her trunk. Extra treatments, fluids and an antibiotic help her bounce back really well and fast.
She was picked as the "Ambassador" for the MDA in this area again. She had her MDA segment for the telethon with Bob Larson WMBD News anchor this past Tuesday at Aunt Dawn's lake house. They had "tea" together!! So cute. Once Elizabeth warms up she is a "Ham".
We got to see Lisa with the MDA besides meet the editor Lisa, Bob Larsen and the camera man Bob. They all could not believe how much Elizabeth has grown and how good she looks. Lisa said she believes Elizabeth is moving so much more than last year.
Then, Elizabeth got to see her first play that her cousin Rachael was in . It was the "Music Man". Elizabeth loved it. She would not be quiet all the way through it asking all sorts of questions!! She would sing when they sang LOL!! She wanted to go back the next day!!
Last evening we met with Melissa from the MDA to introduce Elizabeth to the local firefighters. Lizzy was very shy. They thought she was something and loved her power chair. Christen went to school with Travis and he is the head of the committee. They asked Melissa all sorts of questions after we left. They did not even know Elizabeth was here. Lizzy got them motivated to set a goal for $2,000.00!! Isn't that great!! I do not think they ever had a "Boot Drive" here before.
Melissa could not get over how much Elizabeth is moving more and how great she looks also.
Next trip to Stanford is August 1 I believe. Then Sept and we are done with the study.
It was so great meeting a lot of my online friends this summer!! It was truly an honor!!
Caitlyn's birthday party is in a week from tomorrow and I am sure Elizabeth can not wait!!
She keeps wanting to go some where!!!!!!
June 26, 2007
I would like to say it was great to meet so many families at the conference. I loved meeting so many!! To see so many I know online was just so great.
I did not get to spend much time with too many people.
Annah and Elizabeth bonded. Elizabeth also liked Nick very much. Emma's brother.
I was very upset about the nutrition part of the conference . Parents I did talk to will email me for help ( I hope on the diet)
Dr.Wang not being mentioned for his outstanding work he has done from his trial was not fair. I know the Stanford trial is not funded by FSMA. He should of be included. Now my opinionated nature is coming out after I behaved all weekend!!
I believe it was not right. He is also working on the protocol for the International Standard of Care for SMA with Dr. Schroth and a few of the other doctors and that work is so important also to change the way care-givers (Doctors think about SMA Type 1).
He works so hard for these kids. His research should also be known also.
I felt so bad for him that he was left out of the luncheon with the researchers. I was shocked.
There are kids type 3 on the drug in his trial that quit walking and on the hydroxueria that started walking again. Oh yes. Its all true. Dr. Wang has kids that are Type 1 that are 4 or will be 4 this year that have been on the med since they were infants. He has done so well in this trial and He can not get funding because of a few bias researchers seem to be blocking his efforts to get funding doing drug trials also. Oh yeah.. I pay attention well
Elizabeth's success with the drug is also due to diet ,her NIV protocol and her home care. I would gladly go to people homes and teach them what I know just to save these kids. You pay my way there and I will go or Christen will,
Elizabeth was not in her power chair too much because she was eating every two hours. She was mad too I would not let her in her chair much. . I don't take chances feeding her in her chair.
Elizabeth did real well in her chair after the Vendor turned up her speed on her chair
It was such a wonderful time meeting you and so many families. I could help so many of these families with my knowledge but I do not know how.
Yes I am a bit over whelmed..... but my brain is just spinning thinking of ways to help so many other kids on what I do with Elizabeth and getting the info out there about Dr. Wang's study.
Elizabeth wanted to come home and get her Dog Pepper and go back !!
If I had my own plane I would fly all over the world just to save all these kids. Each and everyone is so close to my heart. I am a big dreamer huh?
No Ph D here just experience and compassion to fill a need to save all the kids
My daughter Dawn is home after her surgery yesterday and half her thyroid coming out. Many prayers that there is no cancer. Test results come back Monday.
June 18, 2007
June 6, 2007
Elizabeth has been doing okay. She is so happy most of the time and just sings and talks and is just a great kid. She is very ornery and says things that shock even me.
She still has some problems once in awhile. A bad crash for the first time in two years almost three weeks ago. I think I aged 10 years in 2 mins that day. She was okay though and with proper training I was able to get her through that.
She gets mucus plugs now and them but not like that.
She is painting on canvas today.
We have a FEW trips to make this month and hopefully we can go and she stays well.
Last trip to CA went okay. We met with the Goodson's again . We just love them!! Jacob is getting so strong and doing so well. We love going out there when they are there. We love staying at the Stanford Motor Inn also. The ladies that run it are so great to us.
Dawn has surgery the 25th and the doctor say it should run smoothly.
My sister was diagnosed with Lupus and was diagnosed wrong!! She has
Fibromyalgia Click here: Fibromyalgia Symptoms . Wow. big difference. She called me today and was almost jumping up and down with relief. That is why you need a second opinion!!!
Elizabeth had her Ortho Appt yesterday and did great. See pictures under photos. http://www.our-sma-angels.com/elizabeth/photos11.htm She grew so much her AFOs gotten last year are now right above her ankles and they used to be to her knee. Shes her new AFOs the 18th of June
We have a big month with lots of traveling!!!!
Pray Lizzy stays well!!!!! Pray Dawn does well and we able to go on our trips.
Next Month Stanford July 18,19 and home the 20th.
April 24, 2007
We are so sadden by the news of losing another child to SMA.
She earned her wings this morning at 3am at home peacefully.
Kalair was 7 years old and had such a strong spirit had and so much courage. She gave us hope . She was such an inspiration to families dealing with this terrible disease
"Fly High Princess, Fly free of disease. We celebrate your life and all the families you have helped. You were an inspiration and gave us hope. You touched so many hearts with your courage and strength. Know we never will forget you and how much you taught us"
I was going to write more on this update but my heart just hurts so bad this is all I will add tonight.
My thoughts and prayers are for her family tonight. We lit our angel candle tonight for Kalair at 7pm.
April 4, 2007
Lizzy loved school!! She thought is was so cool but kept saying 'Dont forget to take my back pack and my wipes home." First thing she said when we walked in my door. " Where is my back-pack and my (germx) wipes? "
Christen stayed today to make sure everything was going okay. Funny we only had to suction her twice. The PT was amazed at her . He said he has NEVER seen a Type 1 with SMA quite like Elizabeth. He works in two counties. He was interested that she talked to well and her movement was good for having Type 1.
She picked the chap stick up and showed him she could put it on herself.
He said people really need to be informed about the diseases their children have because seeing Elizabeth he would of never thought a child with her disease can do as much as she can. He said she proves of what the power of not giving up does. He was amazed.
We had a good talk.
Elizabeth has a new friend Lou (Think his name is) He just loved Elizabeth and was so attentive to her.
Elizabeth is napping now.....
March 17, 2007
Trip to CA was wonderful. Security went smooth this time. Having" Miss Personality"in a great mood doing almost the whole trip went obviously in our favor!! Little drama with her blood test and she was a bit of a stinker about wearing the bipap on the plane but that was it. . She says "I wear my bipap at home, in my room and in my bed not here." It makes her fall asleep that is why she hates it any time other than bedtime.
Ian was there again with his Mom. He was not himself. He just had lost his dog because he was getting to much to handle.(Missy had to give him away). Ian does not know he was given away. He thinks he ran away.
Ian still says he loves Lizzy!!! OMG....... He says " Lizzy I love you" and she says "I know." over and over and over ........ Missy and Ian just got home as they were stuck in Pittsburg then again in Buffalo. They spent the night at the airport in Pittsburg. They left two hours before us on Friday and they had to go to New York.
Elizabeth is 37 inches and still about the same weight as December ..... She grew but since the last antibiotic and her illness she has gained a some weight back but according to Stanford since they have not seen her January or Feb she did not have a weight gain. Antibiotics make her poop several times a day. No matter how much I up her acidophilus she still poops a lot from it. She has gained back what she lost except for a few ounces since her last illness . I have her bumped up on the breast milk again to get some more weight on.
DR. Wang is just excited and glad to see Elizabeth and he says she is just doing so good. He noticed she has gained some strength in her hands. I think its because of her joystick for the power chair. I think using it has helped improve her grip/strength. Just guessing though. She gripped his finger and pulled and he said he can see how she can use a factory joy stick. He is amazed at how clear her lungs always are. He asked" Can she still reach her mouth? I said "Lizzy put your lip on" (Its her chapstick she always has with her). She reached down by her leg grabbed her chapstick (I had the lid off) and she put some on her lips. He was just so excited... LOL ..... She had only stopped doing that for a few months a few years after she was so sick . Her expansion chest is so good now. All those coughs and that nightly bipap paid off . He kept saying "She is just amazing" I know I am bragging but I love great visits to Stanford.
Thank goodness we have only 3 more trips every two months for the trial to be done!!!!! Its been Three years in June!!!!!!! Then he wants to see Elizabeth every 3- 5 months after that. The baby from IL (the Rockford baby) is out of the trial. They dropped out.
We met the Goodson's while at the motel. They have a 9 month old. Jacob Goodson. Cute little guy. They are from Charlotte, North Carolina. He is also a Type 1.
Prayers for Sophia Doebbert, Ally K and Brianna McDanel is in the hospital also so add her to your prayer list also. Plus. prayers for all the sick kiddos I missed.
March 3, 2007
Lizzy is better but not out of the woods yet. No fever for a few days. She is getting junk up and seems to be bouncing back.
If she would wear her bipap during the day she would be better but she refuses and gets all worked up if I even mention bipap. At night she is ready and asks for it. Boy she knows what she wants.......
She is very "Cranky" and very adamant about what she wants and does not want.
March 1, 2007
Lizzy is finally got lots of gunk out white and thick like the two plugs she had come up this week. She still is a little dry but I am getting gunk out every treatment. Boy... this illness has worn me out.... I think its because she is fighting me so much this time. She was so dry and I had added more water flushes when the dryness started , extra saline nebs, higher setting for her humidifier on her bipap, humidifier going in the house, lots of chest pt, extra IPV everything I can think of. Dr.Schroth called in a script for antibiotic. Lizzy's ox rate is good, heart rate a bit higher running in the 110s-120s sleeping and 120s-130s awake. Still doing treatments every 3-4 hours. Fever is gone so far today.
She has been so ornery. She refuses extra bipap during the day and gets all choked up , screams and just gets worse when I try to put her on it . I just put her started back on her regular Tolerex mixture today . She was on breast milk,water and tolerex with her vitamins for 24 hours. She finally took a nap. She has fought naps all week.
She was in a great mood yesterday considering how yucky she feels until it was treatment time.
We are suppose to leave March 14th for Stanford so I am hoping she gets over this illness as fast as one in Jan. Prayers our way.
January 27, 2007
Elizabeth made the front of Saturday edition of the Leader with the Mayor! Click here to read the article!
January 15, 2007
Lizzy is doing real well after this last bad sickness. Stuffy nose a bit but that is it. I have it at both ends.... plus knocked my back out again. Christen went and got Elizabeth Annah's old Koala chair and we are so excited. We have to get new batteries and updates but over all it will work!! "Lizzy will be mobile" in just a matter of days. We can engineer some things to get it to work soon as we get the batteries and a new charger. The MDA is helping us get what we need to get her rolling. Lizzy keeps staring at "She saying that's mine..... That is my Chair..... " "My Mom bought it." I explained to her its was given to her from Annah until she gets her own.( when and where that is going to happen).She kept asking Papa yesterday if she was done yet when he had tore it apart to see clean it and see what electrical things it needs. So she knows what it does!! She remembers!!!!!!!!!
January 3, 2007
The holiday went well for Elizabeth. She got so many presents from friends and family. She kept saying "Open it" Thank you all of you that thought of her! The cards we got were so great!! We got cards from all over the US and Canada.
She had a blast with all her cousins being out of school. She had so much company!!
Ariel my niece is here from Kuwait and will return on Monday. Lizzy said she can not go home.
Lizzy is doing well these days. She can sit up longer and seems to bounce back fast after an illness. I do not know if its diet, her trial med or resp. protocol but maybe its all of it!!
Power chair was denied from insurance and I talked to a case worker yesterday and seems IL has made lots of changes. I need to get my fighting helmet on and keep calling on as why it was denied. I guess they are denying lots of things trying to weed out people that really need or people abusing Medicaid. They said they are not cutting they are denying.(What is the difference???)..... Lizzy has been denied meds and supplies she was getting till last few months. We are not able to get an answer as to WHY? She need the things she has been cut. Oh.... excuse me.... denied.
We have been offered another child's that has out grown hers so that is the route we are taking now. Its 6 hours away. We just got to figure out a way to get there to get it. I am not done fighting for hers' but why should Elizabeth suffer because of IL cracking down. Why pick on the handicapped??????????
We leave for CA on the 10th. Then we do not return to CA after that until March. That is a good thing!!
Sophia D is home from the hospital!! Yeah!! She got home today on her sister Lila's birthday!!
Happy Healthy New Year to ALL!!!!!
November 7, 2006
The Make a Wish Trip was wonderful. Elizabeth has a magical time there.
The Indiana Milk Bank sent her breast milk there so we did not have to worry about taking the milk back and forth worrying about it thawing out. That was great.
Elizabeth had such a great time. My goodness . It was a dream vacation for any child. She has not quit talking since we left for home.
We got to meet the Price family and Steve and Mary Bodzo . Beautiful people all of them!! Hannah looks great!! Christen got to meet Jenifer Minter .
Elizabeth did fantastic the whole trip. I few extra coughs her and there but over all she did fantastic. She is such a great kid. To watch the expression on her face was priceless. The whole time.
I got to see my sister Rita whom I have not seen in a long while!! Its was great to see her and she had bought Lizzy so much stuff!! Her and Jim I think went on some shopping sprees and got Elizabeth a new Dora, clothes, toys barretts, rings, etc all sorts of things. Elizabeth calls her Aunt Rita "My Rita". It was great for Lizzy and Rita to finally meet!!
We had a employee from the Magic kingdom take us all through the park meeting all the princesses and characters we did not have to even stand in line. I had pictures of him and the lady that helped us but...... those did not turn out. That upset me!! Plus a special meeting with all the characters at the Magic Kingdom was ahhhhh wonderful but the batteries in the camera were not working I guess and we did not get those pictures either!!
Its was definitely a trip we all will remember. Thank you "Make A Wish" for making Lizzy's dreams come true.
Then our streak of bad luck started. We had to get a new boiler/heater,the van needed worked on, Nana slipped down the stairs on Halloween, Mommy hurt her back and knee taking equipment up stairs, The drains in the basement started backing up and our trip Stanford was canceled due to Christen hurting herself. What next? A new boiler is getting put in next week, and Papa is fixing the drains.
Elizabeth is doing great. She had no extra treatments or plugs since she got home. Her heart rate just jumped down under a 100 most of the time and her lungs are clear. Its a miracle. She has not had a sat drop at night except one night when she was snoring and I touched her and she stopped dropping.
Elizabeth is just amazing!! I have told several families I think its the breast milk and her tolerex mixture besides her trial med that has made her this way.
Pray our bad luck turns to good luck soon!!!
Elizabeth is just so precious. She makes my day every day....... She says when she wants up in the morning . " Nana up now pleaaaaaaaase " and "Bipap off now!!" I love her so much!! I was glad to share this special trip with her.
October 5, 2006
We went to Stanford for our visit. Elizabeth is 20 pounds and 6 ounces and 35 inches long. So ,she is a pound heavier since August visit and a couple inches longer.
We saw Ian again. He was there at the same time as us. Lizzy just loves him.
We met Reese and his Daddy from Colorado. Reese's Dad was waiting for us to see Lizzy and talk to us a bit about Lizzy's cough machine.
We had no problem getting on the flights this time. Just a late flight due to the weather. We had a 2 hour layover in Chicago. Chicago gave us a print out of Elizabeth's Machines with all the approvals. Only ones we use on board the flights.
We will call every time we fly to get approval for Elizabeth's machines as advised from American Airlines.
We go back the second week on November. Elizabeth will be there for an extra day next time for testing.
Elizabeth was upped to 3.3 mls of the trial drug.
After next month we only have to go every two months FINALLY!!!!!!!!
Elizabeth was in the ISU newspaper! Click HERE to read the article!
September 26, 2006
Well, we were suppose to fly out On WED The 20th of Sept. for CA.
It did not happen. They would not let us fly because the guy at the gate said Elizabeth's food pump was not approved for air travel on American Airlines.
Its was a nightmare getting our luggage that they said it was pulled and in the baggage claims area.
Any way to make a long story short. Elizabeth's pump was actually approved but under a different category.
I had to call Senator Obama's office and they took over.
I was so frustrated by the time I got home I was mess. I had a stress headache and was quite UPSET. I could not sleep Wed. night at all.
Our luggage was flown to SFO then back to Chicago then SFO then back to Chicago and then to Bloomington.
We got it back with minimal damage.
Senator Obama's asst Mikal was the "Bomb" and her staff. My gosh they worked hard and for hours to get our stuff back plus a few incentives!! We got rebooked and they are sending us a check for the gas money we spent.
Senator Obama for President!! Yeah...... the man has my vote!!
Lizzy is okay. She was disappointed we did not fly out but she is happy as can be now.
She was such a trooper when we were at the Airport for hours!!
MY Lizzy is such a great kid!!!
Our next adventure is October 4 . We are suppose to fly out again!! Stay Tuned for details!!
Elizabeth was in the Chicago Tribune! Click
HERE to read the article!