Back from Madison (Spinal Muscular Atrophy type 1)

We are back from Lizzy doctor visit in Madison,WI. Lizzy has seen DR.Schroth since she was 8 months old. I have to say it was one of the best ever 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. Knowing what Lizzy needs to gets better makes my job as being Lizzy caregiver so much better. 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 she was so sick but.... we did a great job getting her well.

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 so 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 remeasure because she had such a huge expansion. 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 deghrees more. Not sure how much the Ortho Doc has to see the Xrays. 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. keeping my fingers crossed that Monica will listen and understand.

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 !!
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 spent a lot of time with Katie, Avery and Aubrey. 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.

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. They have hired back but.... I am afraid because of his union involvement and his age they have no plans to hire him back. Pray they call him back!!! I do not want to move away from our family. Mecalux is offering the experienced maintenance mechanics the same rate of pay and the insurance is cheaper. Does that not beat all. I am not sure why they have not called him back but there is a reason. He has excellent references and was a good worker over 30 years. I am not understanding this at all. We were told something entirely different by the union. Please Please Please Pray he gets called back to work SOON!! We do not want to lose our house.

Many prayer for all the sick kiddos. We have added you to our prayer list.
We believe in miracles!!
www.our-sma-angels.com/elizabeth

Another Lizzy update (Spinal Muscular Atrophy Type 1)

Elizabeth is doing so much better today and actually fighting wearing the bipap so that is an indicator to me she is on the upswing to getting better. Still junk coming out of her trunk but it is moving out. Her O2 level is great, Still a bit higher heart-rate than normal but she is recovering and doing well.

The feeling of being absolutely helpless in getting her well clouded my inner thoughts this past week as I watch her sleep in between treatments. It was hard for me to grasp the thought that she had junk in her chest and no matter what I did nothing seemed to work for days. I thank God she is strong because on bipap she would not drop lower than 94 o2 unless for a second she did but after I coughed her she would go back up and maintain 94 and above. Should she of went to Madison? No.. I think three years ago yes, but as I sit and think about her illnesses and how well I know her and how I can read her eyes I believe keeping her home and not exposing her to any thing else was the right choice.It was a long last few weeks. To know I can handle such a bad illness kind of gives me a feeling of relief. We did treatments every 2-3 hours for days sometimes the treatments would last for hours. The time didn't matter just getting her well was our total focus. We would be so exhausted but we would keep going. Her diet of donor breast milk, pedilite and tolerex I believe helped her get over this faster. I was so worried when she started her symptoms. The high fever scared me but the first few days I could do it alone then as the week went on she was so much sicker.
My illness wiped me out. I do not even know when I got well. Then, to go right in to Lizzy being sick when I had not recovered was something I do not want to do EVER again. With out two of us(Christen and me) doing treatments I could not of done it. There were times for hours Christen and I would cough her, chest pt etc and Lizzy kept saying "more cough more cough". Lizzy would cough so hard and so much like she was in control and watching her fight was what kept us going. She is an amazing child with such inner strength.
I did not know what day it was most days and I am shocked to realize that March is almost gone when I thought about it today looking at the calendar

I did get to hold my new grandson Corbyn today. I sat and held him and stared at him for hours today. I saw my husband, his Dad and Dawn in him. Funny to see so many people in one little miracle. His cry is so masculine. His head so perfect. He is so little, so precious and a miracle. I helped bring him in to this world and that alone is so close to my heart. I helped bring all six of my grandkids in this world.

I also had my great niece today. She looks like she has grown again. She actually had not forgotten me as I have not been able to watch her in two weeks. She was smiling ear to ear and cooing when she saw me today. That warmed my heart.

Paul still has not gotten any calls back on his job applications which is totally upsetting him. He applied at the plant with the new owners and he has not got called for a job. He is afraid he is too old. Several places we have sent his resume and with his experience there has been no one interested. That does not make sense why he would not get called for a job with his references and experience. We are worried about bills piling up. We have insurance until the 31st. I know something great will happen for us. I feel it.

Christen and I both were going to go job hunting ourselves but fate changed that one with my illness then Lizzy's.

Sophia Doebbert pulled through her surgery like champ. My friend and Andrea's good friend Donna(Mary Kate's MOM) called and updated me on Sophia. Andrea is just so exhausted.
Thank God Sophia seems to be doing very well.

Many prayers for Sophia, Kaitlyn and all the sick kids.

Keep us on your prayer list too.

We believe in miracles.
www.our-sma-angels.com/elizabeth

Lizzy Update (Spinal Muscular Atrophy)

Lizzy had started busting the junk up in her chest the other day. Let me tell you this is the worst illness she has EVER had at home. I thought the other day she was better with no fever and the stuff was finally coming out. NOPE!!!!!!! Its been worse with the stuff coming out. She would choke on the junk and it was thick as Elmer's glue and white. It has been so bad. No sleep for me and Christen. Treatments were lasting 2 hours and still her top lobes were full. She would get done eating then I would start the inline nebs. Then again Cough after cough, neb after neb , IPV after IPV . Turning her upside down, coughing her on her side, in drainage position,Chest pt , Poor sweetie she has been such a trooper through all of this . This Influenza crap is the worst I have ever seen.
If your kids get it keep them well hydrated and treatments every 2 hours around the clock. If you can not handle at home take them in to the hospital. This stuff is BAD!!!!!!
Lizzy had high fever for two days ,Diarrhea for 4 days, on bipap all the time except for treatments, she has had anti viral meds and Antibiotics. She did not drop below 94 on bipap except a few times and then her o2 came right back up after a cough. During coughs a few days we had to bleed in o2 only 1 liter but just to help her. I have NEVER done that at home. I went through a whole box of saline and mucimist.

Today her lobes cleared out. Finally. She is doing so much better.
She also has bad break down on her nose.
WE DID IT!!!!! OMG!!!!!! WE DID IT!!!!!

I still have not held my new grand baby and have not seen him except for the day he was born. Dawn has been sending me pics on my phone every day. I have not left my room for about a week unless it was down stairs making food or soaking her masks, neb stuff , IPV etc.

We have a trip to Madison this week on Friday.
Thank you for all the prayers keep them coming. They are working.

Elizabeth- Thursday update( Spinal Muscular Atrophy)

Lizzy is turning the corner. I can take a deep breath now.....( Taking in Deep Breath) . She is desatting a bit getting the gunk out (which is expected with all the thick pluggy stuff coming out) but other than that "its all Good" . She is putting her fingers in her mouth to stretch her mouth and growling and saying "Nina.... ahhh whook at what I am doing ....Grrrrrr" . She is so ornery.
This was a super bad illness...... .... Christen and I still tag teaming her q-3 (Every 3 hours)her to get the junk out. Lizzy had me so worried. She was determined not to go to Madison.
She had it in her top lobes bad....
She came off bipap this morning for a bath with out freaking this morning and then was off for about an hour.
Keep those prayers coming!!!
We believe in miracles!!!
www.our-sma-angels.com/elizabeth

Elizabeth update (Spinal Muscular Atrophy)

Lizzy is on bipap basically 24/7 right now except for treatments. thick nasty gunk. She is maintaining 96-100 O2 on bipap no O2. She is doing well considering how sick she is. Christen and I have had to tag team her for treatments last few days. She is getting treatments around the clock every 2-3 hours. Called UW again and doc for pulmo on call said that if we can not handle it take her to the hospital but she is doing well with us doing her treatments. . Its been hard but we are doing it. We sleep when she sleeps. Treatments are taking over an hour.
Will update when I can.
Sorry I have not been online. Been too busy with Lizzy.
Keep the prayers coming!!!!!

www.our-sma-angels.com/elizabeth

Corbyn Miles Cotter (Spinal Muscular Atrophy Type 1 )

Newest Little miracle in my life is Corbyn Miles Cotter. Born March 12, 2009 to (my daughter) Dawn, Jeff and Caitlyn Cotter. I have six beautiful grandchildren
Every birth or creation is a miracle. More so, the birth of a human being.
To witness 10 births and be a part of each birth makes you look differently at life everytime. I had four children and helped in the delivery of six grandchildren. I held Dawn's legs , Cut the cord , got the cord blood ready for the bank and called the Cord blood bank for the pick up. I do not know how I would of felt if I would not of been there. We were supposed to be in California at Stanford when Corbyn decided it was his time to be born.
I have been dealing with upper respiratory issues all week(Still very sick), Christen started throwing up on Tuesday and Dawn went home from work on Tuesday with some contractions. I was up 4am WED morning finishing packing when Christen came down stairs and was puking non stop and still complaining of a headache. I was going to Stanford any way. Her and I had words. Lizzy has to get her med and see DR.Wang. I did not care if I had a sinus infection and my chest was tight and I had trouble breathing. I was determined to get out there because DR.Wang has been a "No excuses" kind of guy since we have been out of the trial. Christen said she was not going she was too sick. So, we did not go. Elizabeth was very upset. She wanted to see Andy and Molly very badly.
Dawn called and said if she had not delivered by Wed.night they were inducing her on Thursday morning. So, I guess we were not supposed flying out.

Not sure what illness have I was but I was not comfortable going to the hospital yesterday being this sick. I had my four daughters telling me "I HAD to go". They said they can not have babies with out me. So, I went with a mask on my face. I was there for the whole thing but I have not held my grandson yet. I took many pictures but I was too afraid hold him. Today, while every one went to see Corbyn. I stayed home. Lizzy got to see him today and she was so excited. She fell asleep tonight talking about her outing at the hospital. She had athe whole floor of nurses laughing at her in her chair and with her comments Christen said.

I had a call from the Director of Rehab today. I had a hard time talking to him. My chest OMG... I could not breathe when he first called this morning. I really think I have pneumonia . It hurts to breathe and the wheezing is awlful. I have been making Christen do most of Lizzy's care as I am afraid I am contagious. I had to call him back when I was was better. Finally I called him back Matt(The director) and I had a difference of opinion about why Monica decided she had nothing more to offer Lizzy in the way of Physical Therapy services. Elizabeth NEEDS Physical therapy to keep her strong and keep her atrophy from getting worse. Why are they not getting? Its not our fault Monica can not figure out how else she can help Elizabeth. The swim therapy is doing great for her. To make a long story short I gave the phone to Christen and she also got no where with the director on the phone. We do not have access to a pool for Lizzy that is not full of germs like the hospital pool. Its just more brick walls we face.

Paul got his dentures Tuesday and he applied back for his old job with new owners, busted union,less benefits, and lower wages.

Thank you so much for all your prayers!! Keeping them coming so Lizzy does not get this what ever I have!!!!!

Two beautiful people sent us gifts this week. Thank you so very much!!!! You touched my heart.

We believe in miracles.
www.our-sma-angels.com/elizabeth

Hmmmm? what to do (Spinal Muscular Atrophy)

Picture above(taken from Pontiac Daily Leader)at the former Pontiac Interlake plant with people wanting jobs this morning.
Not sure what they are offering at Mecalux. Rumors have that it is 50% of Interlake Wages. Wages compared to 1978. Too bad the economy is not like it was in 1978.



What to do?
We are supposed to fly out in the morning. I feel like a have a 300 pound sumo wrestler sitting on my chest and my ears feel like I am under water. Allergies ? illness?? I cough like a chain smoking cat(Mj's description). Christen is sick also and Dawn called went home from work with contractions besides she said she feels "strange"

DR Wang has been different to us since Lizzy has been out of the trial. She was his "Star Patient" for a long time. Last visit he was very distant to us and had his interns "take care" of us because he was so BUSY. Here is our Choices: Taking Lizzy off the medicine , have none as back up in case she starts losing strength, go ahead and go miss the possible birth of my six grand-child or just go sick to get away from all the drama in our life this past few weeks. I say "Lets Go" because I can not be around a new baby not knowing if I have sinus drainage or a virus, We can take Lizzy off the HD for two weeks before our next visit and see how she does then from there figure out what the plans will be in the future. I do not want Lizzy coming down with whatever I have if I am contagious . I am taking precautions but geeze Louise I dont want her to be stuck in CA with her sick.
So, what do you do???
Prayers for us on our trip , Dawn, the former Interlake Workers , their families and all the people with out work.
We believe in miracles!!
www.our-sma-angels.com/elizabeth




Article below from the Pontiac Daily Leader today:

By Sheila Shelton
Pontiac Daily Leader
Tue Mar 10, 2009, 12:34 PM CDT



Pontiac, Ill. -
As job-seekers lined up for openings at the former Interlake facility, a demonstration was expected to take place.
Former employees of Interlake Material Handling Co., 2 Industrial Dr., held a demonstration beginning at 10 a.m. today in front of the plant today to show what can happen when a company files bankruptcy.
“We want to bring public awareness to the lack of worker protections in the law when a bankruptcy occurs,” said Ralph Timan, president of UAW Local 2488, which represents workers at the former Interlake plant.
United Fixtures Inc., the parent company of Interlake, filed for bankruptcy earlier this year and was sold in bankruptcy court in Delaware last week. The new owner of the facility is Mecalux of Spain.
The more than 200 employees at the Pontiac plant were terminated on Friday. The official sale to Mecalux was expected to take place on Monday and the new owner, Mecalux, announced that it would be taking applications for employees today at the plant.
“The former owners of Interlake used the bankruptcy filing to purge debt owed to suppliers, vacate the union contract and terminate all employees of the company,” said Timan in a press release. “Due to a lack of employee protections in the U.S. Bankruptcy laws, the new owner, Mecalux, is not required by law to offer continued employment to any of the workers at the plant.”
Timan also said that workers did not receive payment for their earned vacation pay, nor did they receive a severance package as negotiated in their union contract.
“Workers and their families face an enormous uncertainty about their future. Further, their community (Pontiac) is impacted by growing joblessness during these challenging times,” said Timan.