Good news...

Just wanted to let you know that today my Mow was up and feeling better. Looks like it was a little virus and we are grateful that she seems to be bouncing back pretty quickly!

Medical Update

There are more special events to share from our Christmas weekend but first we wanted to give you an update on My Mom since there have been a few changes.

Its looking like the continued writing on this blog will be mostly from me. My Moms right hand has continued to deteriorate and typing gets frustrating for her. I'm hoping she will be up to write a few sentences here and there but this week she has not been up to it.

Yesterday we had an appointment at the UCI Palliative Care Clinic and it was a good experience for us. This is how they explain palliative care:

"Palliative Care is comprehensive treatment that aims to improve the
quality of life of patients and their families when facing a serious or life
threatening condition. The word palliate means to ease or comfort through the
prevention and relief of suffering. It focuses on early assessment and treatment
of pain and/or other emotional, spiritual, or physical problems."

A palliative care Dr does not treat actual diseases they treat the symptoms and side effects of the disease to keep patients comfortable. We really liked the Dr and he informed us that the pain she is experiencing in her left arm each night is what they call sympathetic nerve pain. All of the painkillers we have are completely ineffective on that type of pain but we do have a few options. The most promising is a nerve block which she will getting on the 5th.

The palliative care clinic also has an anesthesiologist who makes sure that the medications we are using are the most effective as well as making sure that the medications do not interfere with one another. They changed a couple of my Moms medications yesterday and we will see how she transitions onto them.

While ALS is obviously not a party to deal with, it gives us peace to know that it is not a painful disease. The pain she is having in her arm is from the atrophying in her muscles and her inability to move her arm in the night. Most of us naturally move our body while sleeping if we are uncomfortable. When her arm becomes uncomfortable in the night her nerves tell her arm to move but since there is a disconnect to the muscle her arm does not move. The pain builds through the night until it wakes her up. During the day her pain in that arm is between a 0-1. When she wakes up in the night her pain is between 5-8. Hopefully the nerve block will eliminate that.

We also started Home Health Care with St Joe's this week and we are happy to have a nurse coming in and regulating her progress as often as they think necessary. I mentioned earlier how we are unique because my Mom is not on Medicare. At this point most people with ALS would likely go to hospice but with private insurance we will go through Home Health for now and eventually switch to hospice. So far we have been really happy with Home Health. They have been attentive and they will be sending the same nurse each visit so that she will be able to recognize changes in my Moms lungs as she listens to them each visit. She is on palliative Home Health Care which means they too are focused on her continued comfort.

The best news is that we have my Moms sister Pam here to stay with us during the week from now on. Two caregivers can care for my Mom but with my kids here its hard to have us both available. My Aunt will be staying with us through most of the week and then either John, Mark, Lisa, Brian, or Kate be here for the weekend to be our third caregiver. My Aunt is the best not only because she is incredibly fun but she is also a nurse! Even better for 10 years she worked for St Joe's Home Health and Hospice and still knows many of the people there. She brings my Mom a sense of comfort with her presence and its been great for my Dad to feel at ease enough to relax a little and get more rest.

My Aunt could not have come at a better time either because my Mom woke up dizzy and nauseous today. We are not sure if it is because she has a virus or if it is because we changed her medications yesterday. My Aunt knows what my Mom needs and worked with the Dr's to get it for her. She keeps my Mom comfortable and her sense of calm and patience keeps us from getting to worried. This is the first day my Mom has not been able to get out of bed all day.

She was running a slight fever at the Dr yesterday - 99.3 which is marginally high for her since all the women in our family consistently run around 97.6. That seems to indicate that this is probably just a virus and we are optimistic that tomorrow she will wake up feeling better. We took her off all the new medications just in case and after she feels better we will start them again, one at a time.

We are keeping her comfortable and with your combined prayers I'm sure she will be up and riding around in her new custom wheelchair that is being delivered tomorrow! Watch yourself on the roads in Brea! She hasn't been able to be independent for a while and you should have seen her cruising Lambert yesterday on our walk!

The greatest Christmas gift

In order to understand how wonderful the gift our family was given this Christmas you would have to understand what happened on Thanksgiving....

After an amazing Thanksgiving dinner at my Aunts house my Mom had one of those moments where her grief overwhelmed and knocked her over. People always talk about the stages of grief. I agree with the emotions they have identified but I think the term "stages" can be misleading. Stages seem to imply progression, that you complete one stage and move onto the next stage. For us grief has not been like that. It hits us in waves. Most of the time we cant even see it coming and it knocks us over before we know its there. And it comes over and over again.

My Mom was hit with one of those waves after dinner because she had been forced to sit on the sideline of the dinner preparations all day long. Here is what she typed on her ipad that night:

I realized tonight that I cant do Christmas dinner. I always wanted a family holiday dinner like we had today but I am not able to enjoy it like I would have when I could be apart. These last two days I have lost my ability to talk and by Christmastime I wont be able to communicate or use my hands.

We knew we had to do something different for Christmas and our plan was to have it catered which would eliminate the need for us to be busy in the kitchen all day but still allow us to have our traditional meal. A few weeks before Christmas my Dad got a call from President Love, a member of the Stake Presidency in our Church. He asked my Dad if we would allow him to bring us Christmas dinner. My Dad does not break down very often but in his own words, that offer overwhelmed him.

Not only was the offer amazing and an answer to our prayers but he went about it with sensitivity and selflessness. He wanted to know what we eat each year and even offered to gather our traditional dishes ahead of time to serve it in. He wanted to give us our traditional Christmas dinner without the burden of the work.

Rumor has it that President Love is an extraordinary cook so we were looking forward to Christmas dinner with great anticipation! It was liberating to be free of the cares and obligations of dinner so we could focus on making my Moms day as comfortable and happy as possible. In fact our minds were so at ease that we failed in our only responsibility of picking up our pies from Marie Calendars! (No worries - we did get them thanks to Kelly)

As we were setting the table at 3:00 I realized that I had also forgotten to buy Sparkling cider. My Dad asked me if we had cider around 3:30 and I scoured the storage for any hidden bottles with no luck. My Uncle Rick had thankfully brought 2 bottles, but that wasn't going to go far with 20 people. I was really irritated with myself for not even thinking about it ahead of time! I wanted everything to be perfect and I was so frustrated with myself that I put myself into a really foul mood.

Santa came right on time in the form of President Love, with his Santa's hat and apron on accompanied by his sweet wife. As he brought the platter of turkey in the kids came running and shouting, "there are a hundred people coming to Grandma and Grandpas house!" As I walked out onto the porch there was a procession of loved Ward members from our Church, bearing dishes loaded with delicious smelling food and I heard the sweet melodies of Christmas carols.


I can not explain the love our family felt in those moments looking around at the familiar faces of those who have loved and supported our family over the last 23 years.


We saw people we had grown up with as children standing there with their children. There were faces I did not recognize that had come with those they were visiting to share in this sweet gift for our family. Everywhere I looked there was love reflected on tear stained faces.



My Dad stood holding my Mom against him for support as they listened to the carols. This was the ultimate gift of love. It was touching that our friends were willing to sacrifice their time on Christmas to serve our family.


I had one counter cleared and ready for food but when I came back into the kitchen that counter was overflowing, the island was filled and had overflowed onto another counter.


It was like Christmas morning all over again as we unwrapped the foil to find what dish was inside. It was a beautiful and delicious feast! For me the tears really came when I saw 6 bottles of cold sparkling cider! Everything was perfect, as I had longed for it to be.

As we celebrated the birth of our Savior this last Saturday we experienced first hand his message to his disciples in John 21 :

Jesus saith to Simon Peter, Simon, son of Jonas, lovest thou me more than these?
He saith unto him, Yea, Lord; thou knowest that I love thee. He saith unto him,
Feed my lambs.

He saith to him again the second time, Simon, son of Jonas, lovest thou me? He saith unto him, Yea, Lord; thou knowest that I love thee. He saith unto him, Feed my sheep.

He saith unto him the third time, Simon, son of Jonas, lovest thou me? Peter was grieved because he said unto him the third time, Lovest thou me? And he said unto him, Lord, thou knowest all things; thou knowest that I love thee. Jesus saith unto him, Feed my sheep.

Our family was fed not only physically but also spiritually and emotionally.
Christmas dinner has never tasted so good!

Our family will never forget your kindness and generosity.
We thank everyone who participated with all our hearts.
We love you so much.

And to dear President Love, thank you for being available to hear the quiet promptings of the Spirit for our family's need. We didn't even know how much we needed it.

You were our real life Santa Clause this year.

A disclaimer: If you were wondering why my Mom looked like she had Christmas tree ears on...that would be my fault. John and I thought they were so over the top and fun that we put them in her stocking and always a trooper and ready for a good time she wore them all day. I just realized that Lisa never put the light up Christmas earnings that she and Mark put in her stocking too- Darn it! That would have made the outfit even better :)

Around my neck...

I wear this each day.

As a reminder.

Merry Christmas Eve!

Medical Update

Once again, this is Lisa. I know you all come here anxious to visit with my Mom but you keep seeing more and more of me. Unfortunately that is because my Moms energy is decreasing daily. Even though our days are pretty empty, we seem to hardly have a free moment. Many of you have called or e-mailed in the last week - we appreciate it more than you will ever know. I'm so sorry that we have not been able to respond individually. This has been a really difficult week. My Mom has been delighted with the cards, e-mails, and comments from family, friends, people who know her children, and even strangers. Truly they light up her day! We thank you and hope you understand we wish we could do more to express our thanks right now!

The last week has been a frustrating and emotional one here at our house due to many different factors so bear with me as I try to get you all caught up...

The ALS clinic usually sees patients every two months to track their progress and get their patients the resources they need at that point in their care. For my Mom this timeline has not worked well because of the speed of her case. She has not been seen frequently enough for them to comprehend how quickly she is progressing. It was frustrating for us to feel that no one was monitoring her progress and walking us through this step by step.

We saw her becoming more uncomfortable this last week as her pain started increasing, which also started causing her some anxiety. We didn't feel like we were equipped to get her what she needed when she needed it. That feeling of helplessness is pretty brutal on us as her caregivers. Her pain is mostly at night and it has been keeping her from sleeping. As her muscles are deteriorating they spasm and leave her without the ability to shift her weight. That builds on her pressure points and was then compounded by her lack of sleep. It left her drained when the day began and made her dread going to sleep at night.

One side of our frustration is that as a professional stay at home Mom she does not have enough work credits to qualify for Social Security and disability benefits, which then makes her ineligible for Medicare. ALS is one of 2 diagnosis' that waves any sort of waiting period for Medicare benefits. The day you are diagnosed is the day you become eligible. Everyone in the medical field assumes we are on Medicare because everyone else is and with medicare everything is covered and there is no thought of pre-qualifying or limits. Thankfully my Dad has good insurance but we are having to play their game and jump through the right hoops with the insurance company. It is maddening when her condition is changing so quickly.

A friend of my Moms lovingly joked with her that, "even in death my Mom is an overachiever!" Her progress has been nothing short of shocking and its no wonder that we and her doctors can hardly keep up with her. The last time she was seen at the clinic her feeding tube surgery had been performed one week earlier. During that apt they did whats called a Forced Vital Capacity test. The Forced Vital Capacity test is one test in a group of breath capacity tests that can be a rough guideline for how a patients lungs and diaphragm are digressing. The test requires the patient to exhale as hard and long as they can into a mouthpiece or mask that is attached to a recording device.

For people with ALS the weakness and loss of their diaphragm muscles is what will eventually take their life. Without the ability to move air in and out of the lungs, oxygen levels drop and they can not breath out the carbon dioxide which builds up in their bodies. Some people choose to have a ventilator and a tracheotomy but my Mom does not want that. There is no magic number of vital capacity that life is lost because each persons body has a different tolerance. Some people can live for months on 15% capacity while others can not handle 25% capacity. The only concrete information I have been able to find is that below 30% can be life threatening.

Exactly 3 months ago my Mom had her 1st test and her FVC was 106%. Once again a overachiever, how exactly does one get over 100 %??? A month later she was down to 98%, which let us know that her diaphragm was starting to be affected by the disease. A month ago her FVC was 70% which was a significant drop for just 1 month. But that was the test we questioned the accuracy of since she had just had surgery and her stomach muscles were sore, which could have affected her ability to perform the test.

Since Thanksgiving we have noticed her breathlessness increase dramatically and her strength has decreased dramatically. We have been trying to have her FVC done again for some sort of indication of where she was at! We were finally able to get in today to have the test done and have her seen at the clinic by the head nurse. She blew a 35% on her first blow and then a 40% on her second. She is down 30% in 1 month! Her 106% was blown on 9/21 and that means she is down 66% in exactly 3 months! That's an average a 22% loss each month!

These tests are not perfect and ALS patients can plateau, or so we've heard - we have yet to see one! Please understand that this test is not a perfect prediction of what she will continue to do. There are a lot of factors that still have to be considered. We don't know what tolerance her body has overall and she might be able to tolerate living at a very low FVC. We also don't know what her tolerance to the BiPaP machine will be.

What the BiPaP machine does is inflate her lungs so she can exhale more than she could on her own. An ALS patient can not just be given oxygen because they don't have the ability to breathe it in deeply enough. That is what the BiPaP does for her. She wears it at night and then as much as she needs to and can during the day. If you want to see what it looks like look back a few posts and there is a picture of her with her mask on. It is pressurised normal air and she has done really well adjusting to the machine. The pressure can be very hard for people to tolerate. She started on the machine with a pressure level of 8. A couple of weeks ago she felt like she wasn't getting enough air while wearing the mask. We learned that when that happens we need to increase the pressure because it has to blow harder to get air to the bottom part of her lungs (which is where the deterioration starts). She is now at a pressure level of 10. The respiratory therapist told us the highest pressure he usually sees people tolerate is around16 but her machine can go up to 24. We don't know how high she will be able to tolerate the pressure.

All we can really walk away with from yesterday and the test results is the knowledge that her diaphragm and lungs are losing their strength as quickly as her body is. Yesterday, we ordered all of the medical equipment she will ever need. We have a gel pad and hospital bed being delivered today and hopefully this will help her with her pain at night. Her custom ride (electric wheelchair) cleared insurance which is great news and should be here next week! A loaner wheelchair should be here today or tomorrow. She also will be seen at a pain clinic starting next Tuesday which will help as this progresses to manage her pain and keep her comfortable.

There are simply to many factors for the clinic to give us any sort of reliable expectation for how much time she has left. Using averages and subtraction we can deduct that if she were to continue at the same rate she has so far, we have around 4 weeks left, give or take a couple of weeks either way. NO medical professional has ever told us that doing that kind of estimation is a reliable or even logical thing to do so please don't misunderstand that to be reliable medical information.

Even when we know what our path is, the reality check of where we are on that path can still be hard and even shocking at times, at least for those of us traveling with her. My Mom would have honestly been more heartbroken if they had told her that her FVC was at 65% capacity. She and I were talking this week about how a spirit as strong as hers simply can not exist inside her newly broken body.

She told us from day 1 that she had ALS.
She told us from day 1 this would be her last Christmas.
And before her test yesterday she told us that her numbers were going to be really low.
She hasn't been wrong yet and I'm not sure when we will start actually believe her :)

And now....shes telling us that her time is short.

Its amazing that this doesn't make her despair. She didn't flinch at her numbers today. It was like she was hearing the weather report. Actually, with all of this rain shes more distressed over the weather report because its interfering with her Christmas lights and weekend! That is not to say that she doesn't have moments full of anger, fear, and anxiety. If she didn't have those moments we might be insulted that she is so happy to leave us :)

But overall she is at peace. She does not want to suffer. She does not like feeling weak and dependent. In the beginning of this disease I was hounding her for the things that she had always wanted to do that we could accomplish before she died. Every time she would smile and say, "Ive done everything I ever wanted to do. I'm content."

Today all 3 of her kids will be here with our families for a 4 day Christmas extravaganza! I'm very confident that nothing in this world could compete with the joy that will bring her!

Truly she is content, and that is where we find our source of peace and comfort.

Leaving her mark

I wanted to share a real quick story that made me smile in the last few weeks. At our church building the women's restroom was decorated with flowers, decorations, and nice smelling soaps by someone. On the mirror there is a little sign that says something along the lines of "done lovingly for our sisters." Ive seen that sign many times when I have come home and thought how nice and thoughtful that was of someone.

And then while standing there waiting for one of my boys I noticed for the first time something that took my breath away. On the bottom of that sign someone had taken the time to write back, "Thank you. We appreciate it." I knew that writing,

I miss that handwriting.

My Moms right hand in the last few days has lost so much strength that she no longer can write legibly. I loved my Moms handwriting. It was always perfect and so consistent - something that my handwriting's definitely lacks. Its funny how something like a signature becomes so special. I cringe when I think of birthday cards in the past I have thrown away. How I wish I could get them back now. I will cherish the cards and letters I do have that she has signed in that personalized handwriting that is uniquely my Moms.

How many times have I gone into that bathroom and thought that it was nice of someone to do that but never did anything to convey my thanks. My Mom took the time to express it and I love that about her. If find yourself in that bathroom and see that sign in the future you can look at the writing on that sign and remember my Mom. Remember that she took the time to express her thanks.

I hope it will make you smile too.

Genetics

Today we had an apt with the geneticist to help us decipher the results we got back on my Moms genetics (or at least try to). This may only be interesting for Caroline's relatives...for the rest of you - sorry this may be loooong!

Some facts to start out: Only 5-10% of ALS is passed through genetics and they classify those patients as having "familial" ALS. Of that 5-10% that have familial ALS they can only identify the gene responsible in about 25% of those cases. If they can not find it on a gene that does not mean that it is not familial. Familial ALS does seem to be more aggressive than non-familial ALS. They also usually classify it as "familial" if 2 or more people in a direct line have ALS. My Moms Aunt died of ALS, and it is suspected that my Moms Aunt's cousin also died of ALS. They have assumed because of the family history and the speed of my Moms disease that her ALS is familial, although my Moms Aunt lived for 3 years after symptoms developed so even compared to her Aunt my Mom is going fast.

Now for a quick biology recap: Each human has 23 pairs of chromosomes. They inherit one from each parent making a total of 46 chromosomes all together. On these chromosomes we have "genes" and there are over 30,000. A gene mutation or variation can cause genetic disorders either through a deletion in the sequence or additions. ALS is classified as autosomal dominant which means that only 1 parent has to pass the bad gene, a bad gene will dominate a normal gene. Theoretically this means that if someone has it on their gene - they will get it.

The majority of familial ALS is found on the SOD1 sequence. They are finding new gene mutations that can also cause ALS but these are still very new. In my Moms case there is no sequence alteration on her SOD1, TARDBP, ANG, FIG4 but on her FUS sequence there is a sequence alteration. They have it listed as FUS Variant 1: 3 base pair duplication of CGG. What does that mean? It means there is an amino acid change of unknown clinical significance. And what does that mean??? A genetic mutation of the FUS sequencing has only been linked to ALS in the last year, maybe two. There is simply not enough information to determine if this is what has caused her ALS. She did point out that a 3 base pair duplication is better, or less significant, than a 1 or 2 base pair duplication since it keeps the amino acid chain intact (if you understand what that means feel free to explain it to me)!

The only way to find out if that mutation is significant to her ALS would be to test her Dad and find out if he has this same genetic mutation - because it was his sister that died of ALS. Although if he passed this mutation onto my Mom, and it is a mutation that causes ALS, her dad "theoretically" should have gotten ALS because he would have to have the gene and the gene is suppose to be dominant. Only problem with that is he is 86 and does not have ALS. They explained that all of the genes interact with each other in different ways so someone can have a dominant gene and have it be dormant because of other genetic factors.

What we can conclude: a whole lot of nothing! We don't know if my Mom has familial ALS or not. She does have a genetic sequencing alteration that "could" cause ALS. It can only be proven by finding that genetic mutation in my Grandpa, to prove that the link between his sister and my Mom and also have one of my grandpa or his sisters descendants also get ALS - who also have this same genetic mutation on the FUS sequencing. That would show a direct link between the mutation and ALS. There are Dr's salivating over getting mine, my brothers, my Aunt, and my Moms cousins DNA...at least for me, its not going to happen.

No matter what my brothers and I have a 50/50 chance of having this sequence alteration. My mom has 2 chromosomes to pass so she either passed us her good or the altered. My Moms sister has a 50/50 chance of having that same alteration since one of her parents has to have the mutation. My cousins could have a 50/50 chance of having it - but only if their Mom inherited it like my Mom did. My Moms cousins have a 50/50 chance of having a ALS mutation but only if their Mothers ALS was actually caused by genetics.

It doesn't change anything about the way my Mom is treated, they just are looking for subjects that can help further their understanding of ALS. It is such a unknown disease and we have so little knowledge about what causes it. They are going to do another test on my Mom and look for yet another genetic alteration that they are just discovering the link between that sequencing and ALS.

For now, only time will be able to tell and there is no use worrying about it :)

How to leave a comment on this blog...

I have had several requests from people on how to leave a comment here for my Mom. At the bottom of this post you will see something that looks like this : 1 comment. If you click on that it will open a new window where you can post a comment.

Hope that helps!

Dng-Dong-Ditch, 12 & 24 days of Christmas

This has been a fun season so far. My sweet daughter-in-law, Lisa (Mark's wife) started Dec 1 with "the 24 days of Christmas". where she gave me small gifts to open each day along with a rhymed message to go with it. This has been so fun for me and I look forward to it each day.

We had Bonn fires in the driveway and waved to people as they drove or walked by looking at the lights. Hosted a couple parties. We are seeing movies and I am getting weekly massages.

Then 2 days ago we had a ding-dong-ditch Angel start the 12 says of Christmas to our family. They 1st gave us a chocolate cake (my favorite), last night we got 2 stockings. How fun is that?

And we are feeling God's love through you angels of Mercy. Your cards, letters, and friendship are buoying me up, thank you, thank you, thank you.

Unfortunately...

This is a sad and emotional post to have to write and my Mom has tried to push this milestone off as much as she can. In fact its a little bit of our intervention that has initiated it, because my Mom loves people so much that she might not ever get to the point to take this next step.

Unfortunately, the time has come that even though she loves visitors, it takes to much out of her to have visitors coming to the house. Even short visits seem to drain her since she cant help but want to talk and express herself. And you know my Mom, she cant but express herself in her animated and energetic way :)

I know that many of you have not had the chance to come visit with her yet and for that we are truly sorry, this disease has not relented in its pace and none of us ever expected this to come so quickly. We are so grateful for this blog because this is where she will continue to write her messages and love to each of you.

She adores cards, messages on facebook, and comments here on her blog are a great way to "stop by" and visit with her. No really - she LOVES comments! If you need our address for a card you may contact Lisa at johnlisa02(at)gmail(dot)com and I will send you our address.

We can not express our gratitude for the love and support you have all given her and wish we could individually let you all know what an impact you have had on her life. Please know that she wishes with all of her heart to sit with each of you and tell you that herself.

Thank you so much for your understanding and consideration.

Sweeeeet Caroline...

STRONG

FUN

EXUBERANT

LOVING

SILLY

SASSY

&
SWEET!

I love these pictures of her.
We took them in September right after she was diagnosed.
They make me smile every time I see them because they show so much of her wonderful and animated personality!

This is who she still is.
This disease has not & will not ever change her Spirit.

I just wanted to share them with all of you that love her too.
-Lisa

Medical update

How do I start? I guess its time to be honest. My case of ALS will go down in history as being a very fast case. Here is how I see it. The ALS clinic is barely keeping up with my changes as their clinic is held every 2 months. They have no clue how fast I am deteriorating.

My muscles are atrophying to the point I am becoming hunched back. I can no longer stand up straight. This makes my shoulders and neck ache constantly.

I can no longer talk. I can't answer the phone, because you wouldn't understand me. Today we had an appointment with the Speech clinic and I now have a mountable computer on order that can be calibrated to read my eyes for typing! How cool is that?

My left arm is dead weight and swollen, but you already knew that. Now my right arm is almost gone and my right hand still works, for the most part, but my right hand is very weak. I can't really write my name anymore! Here it is Christmastime and I can't wrap or unwrap the presents. But guess what? It gave Ashlynn, my 10 year old granddaughter the opportunity to practice wrapping, and she did a great job. Thanks to everyone who has helped me wrap my presents!

My legs still work, sort of. I have to be helped into a standing position from a sitting position. Yep, it means I can't go potty alone anymore, I need some to pull down my pants, pull me from the toilet after my business is done and then pull my pants up again. sounds invasive and it is!The good news is that I have one of those fancy electric wheelchairs on order and it should be here just before Christmas! Watch out world, here comes Hot Grma Silly Caroline, get out of my way!

As for food, I still try to take a few bites of food, but I am getting most of my nourishment through my feeding tube. The good news here is that I have always considered eating a waste of time! Don't get me wrong, I like good food, it's just my motto has always been "I eat to live, not live to eat"

The only really scary part for me is the ability to breathe. At my 1st appointment at the ALS clinic they tested my breathing and I was at 106%. After my feeding tube went in, I was at 59%. Now I am guessing I'm about at 40%. Since the Dr. is on vacation until Dec 20, I can't have it tested again until then. This means my diaphragm is now affected. Meanwhile they suggest I keep my Bi-Pap machine on at all times. Can you imagine sitting around all day and all night hooked up to a machine with a pilot mask attached to your face, smashing the bridge of your nose as it keeps slipping down on my face, with a harness going around your head holding it in place??? I can't even unhook the strap anymore to free myself when I get an itchy nose, therefore I feel like a caged animal.

(A visual of her mask)

Oh, but it keeps me breathing! I decided when I first learned I had ALS that I would NOT be tracheated! Although my breathing is harder, I stand by that statement. No heroics for me, there are a lot of things I am afraid of, and being just a living vegetable is one of them, Heaven is not!

Primary Love

I served in the children's organization of our church for over 25 years. We call it Primary. Recently i served in the 4/5 year old class until I couldn't talk anymore. 2 days ago, the Primary leaders brought the children to visit me for a surprise service project.Here they are singing Christmas carols to me.

Here is their awesome chorister, Sister Stephanson.

I love the children.

Here they are presenting me with a tree and ornaments with their individual pictures on them. That's Garrett Larson giving the ornament he made for me. Each child presented me with an ornament .

I think the train and toy city were a great big hit!

This is my new Christmas tree full of love from the children!

3 Dec 1894

Everyone who knows me, knows I'm a committed family historian and since today is the anniversary of my all time favorite grandma's birthday, I thought it fitting that I tell you something about her and me. Born Lucretia Huston in Mattoon, Illinois on the date above and struck by lightening at the age of 3. She lost her only sister (Hattie) to a tragic death in 1903, Hattie was only 13. At the age of 14 (1908) her father died, she married at 15 (1910), 1st child born 1918 (Uncle Walter), 2nd child born 9 mos later in 1919 (Uncle Jim), divorced 1st husband after falling in love with her 1sr cousin, John M. Taber. 1921 was a pivotal year for Lula, she lost her domineering mother to utern cancer, birthed her 3rd child (Uncle Don) and became interested in Spirtilualism. In 1923 she moved to St. Louis and started her phenomenal career as a Spiritualist
Medium then in 1924 she had her 4th son my Uncle Harold. Her fame grew and she started giving Materialization Seances. Her fame was in Spiritualist circles. She was kind, polite and loving to all she met! Everyone loved Rev. Lula Taber! In 1926 she finally gave birth to the daughter she had longed for, my mother, Gloria Lou Taber. I'm sure this was a surprise because she used to tell me all the time that although she was glad for a girl, she was very disappointed that Gloria wasn't born on Dec 3rd! Dec 3rd was Lula's birthday and Lula was born on her mother's 3oth birthday, Dec 3rd 1864 (Eliza) and Eliza was born on her mothers birthday of Dec. 3rd 1829 (Caroline Melissa Coleman). Yep, mom broke the chain and in more ways than one!
By the time I was born in 1952, Lula had reached her heyday in Spiritualism during the 1940's. She divorced her cousin due to cruel and unusual punishment and moved with her daughter to San Bernardino, CA. I was her 8th grandchild and at this time she weighted between 300 - 400 lbs. This was in direct correlation after being hit by lightening as she started growing larger at age 3 and was a very Fat and heavy woman all her life. I can't begin to count all the diets and gimmicks she tried to loose weight. Just remember she did everything in her life while weighing 200 - 300 lbs. Grma Lula was a very Spiritual person and she would tell me stories of Jesus from the Bible and we would talk of religion all the time. She is the person who built a testimony in me that we had a Heavenly Father who sent His only begotten Son to earth to atone us from our sins.

Happy Earth Birthday Grma, I have loved you all my earthly life and I look forward to a wonderful reunion with you in Heaven in the next little while!
This is me and my Grandma Lula and me at Christmas in 1952