My Feeding Tube

I got my feeding tube the third week in June. It was placed about 4 inches above my belly button, and was so welcomed except the first week that I was recovering from the surgery. The pain was about a 9 out of 10 but liquid loratab saved the day. My liquid 'high' only lasted about 4 days until it wouldn't allow food to stay down.
The nurse kindly showed Brian and Tarra how to properly feed me through this pec tube. I am writing this on October 24, 2010 and it has been about 3 weeks the feedings have gone smoothly. The problems? Thought you would never ask. First one was not using a towel because it always leaked either allot or a little. The milk or juice would splash on the floor or all over me, on my chair, and on my computer. When they were not feeding me the tube would be stashed in my bra or just rested between my legs or sides. Not comfortable.
A small miracle happened about a month ago. Brian retrieved my jewelry from storage. Now those jewelry boxes also stored our beloved collection of decorative pins. Pins with holiday markings, blood donor pins, etc. This gave us the best idea since buying poodles. Why not just pin this pec tube up by left or right shoulder? Then one day this month Tarra started feeding me through the top of my shirt instead of pulling my shirt up to retrieve tube from down under. Wow, the food went right down! Now once or twice a week a little coke was poured through the tube because it kept the tube flowing smoothly. [Kinda like Drano.] So happy the bugs were tweaked out. The only thing we can't fix is the burbs and sometimes spit ups. Yep, just like a baby. So I get a little taste of the protein drink or juice which is okay, unless they put hot peppers in my drink, the burb burned all the way up! But that only happened once. And today I never felt better! Not only is it comfortable, the fresh juice is everything its cracked up to be!

OUR SUPPORT GROUP

When I was diagnosed with ALS in April of 2008, I was still working. And I had to get used to the idea that life as we know it was taking on a new chapter. We didn't attend an ALS support group until December of 2008. We were picking up our first wheelchair from MDA when 'Dave' [Ricketts] invited us to attend. It was a nice Christmas party that we really enjoyed. From then on we attended fairly regularly. They were very informative; guest speakers from social security to funeral planning. They showed gadgets and then the very popular doctor Bromberg would speak. Then for October 2010 SG Brian was asked to speak. 'Of course' said my extroverted husband. The night turned out great because my sweet sister Karen spoke how we had fun together growing up and a lot more. My mother spoke on my grandma Fisher, who died with ALS clear back before I was born. Mandee was next and she spoke on our fun hikes we used to do down the green river trail. Then she showed some of the afghans I crocheted for her. Brian spoke very humbly and our daughter Tarra read from my blog about a bad night, [one that i didn't pick] and my tears flowed. But the people were touched by it so it turned out fine. The pictures posted are of Dave Ricketts with me; and part of my family that came to support group to hear us speak.

MY VERY LONG CLINICAL VISIT;

Its Wednesday morning October 13, 2010. I got woke up early, like 4am. The mask is so uncomfortable and my mouth is so dry. Brian took the mask off, just like other mornings. I'm beginning to think the smaller size is to blame.
Well, enough of that, Brian's home today to take me to my quarterly visit to the U OF U, a clinic by the John Huntsman cancer center.
Here they weigh you, take pulse, blood pressure, all that stuff. Then you are assigned a room so up to 9 different professions can visit you. A new lady, Anna from MDA is first. So sweet and so willing to help; and she loves my blog! Then Jennifer, the occupational therapist comes in. She helps us with our shower chair woes, and she reads a story in my blog and she likes it! Then we get Kari, the nutritionist. No problems there, wait, how much protein per day? The discussion ends with me promising that I would make a food journal for a few days so I can email it to her. By the way, she reads the same story in my blog. Then we get Kathy, the social worker, very easy going and always listens. She reads yet another story on my blog, this one's about my love for Prozac! She so understands. Next is Kristy, our very smart pharmacist. What's this, you drug your wife so you can sleep? Joking aside she says try Melatonin, it helps you both sleep and could help your dry mouth problems. [sleep aids tend to do this]
Long story, not done yet, we have a small break. Brian says hi to some other patients we have gotten to know for a while. By this time its after 4pm and have not seen the doctor, but we get a resident that checks my very weak limbs and asks a lot of questions. Last we see Dr. Bromberg; he brings in 3 more med students and asks if they can poke and prod. I tell him I'm too tired and then I ask if my swallowing was going to stop working any time soon. Then I ask a question about dying naturally; he answered both questions in his kind gentle way how not to worry. The rest is a blur because I was crying by then so we finished up and Brian took me home. The crying started again Thursday and poor Brian thinking it was his fault finally understood that I was still tired. You can only guess what Brian drugged me with that night. It was so welcomed! I slept late and feel great!

ANOTHER KELSY MOMENT:

Kelsy [age 3]is on her way to becoming an awesome big sister to her baby brother Joshua [18 mo]. Its probably a good thing because he is going to be bigger and stronger. Kelsy helps mom and dad by keeping Josh out of [trouble] when they are not in the room. So for the umpteenth time it happened today [Oct. 12] Josh got into the craft box. Kelsy took it away, leaving Josh mad and crying; he came after Kelsy. But she wasn't going to let him get her, smart Kelsy ran away from him. Something magical happened. She started running in circles. This caused Josh to stop crying and run in circles with her! Both just laughing and no one saw but me. What a special moment.

BIRTHDAY AND RECAP

TODAY IS SATURDAY, OCTOBER 9TH 2010 – this morning we got up I drove out to the living room and found little Chewee scratching at the back door! Now this tells us that he's a little escape artist! The back yard is all fenced in even to the back door. I could hear him an hour sooner but too groggy to wake up. I'm still a little tired and I can't get comfortable because its a little cold. Brian is tired too, he gets all cozy with a blanket and our two poodles. They like to snuggle too. Now the kids are up, time for breakfast.
Today Cherish's birthday! She is now 4 years old! Our little Guatemala girl is so sweet and smart. Her parents, Scott and Tara have done so well with her. She gets to spend Mondays and Wednesday with us because her and Kelsy have preschool. Now were heading to SLC to the gateway. Kelsy is invited to a party at Build a Bear workshop. So Brian drops Kelsy and Tarra off and we head to our favorite store, NPS [Market Square]. We buy needed supplies and some we don't need. When we got back Brian wanted to go again, this time to find a Geo-cashing spot on a trail just south of Free port Center. You can sure feel that Fall is here, but a pleasant 65 degrees. Now we are watching our favorite team play; BYU. They won a nail biter 24 to 21 against San Diego.
Brian seems more rested this week now that the potatoes are all sold and delivered.
We had a busy week but Brian had Friday off and got much needed rest. We got a treat last night by seeing a great show at Rodgers Theater. The show was 'CLUE' just like the board game only better. Very funny and very good acting.

MY WONDERFUL NIGHT

TODAY IS WEDNESDAY, OCT. 6th 2010
Last night was great! We had support group and they asked Brian and I to speak. Its located in Salt Lake by the University of Utah campus.
Well, not many people came but allot of my family did! Karen, my sister talked first and she talked about growing up in Clinton and all the fun we had growing up playing softball. She said some nice things so thank you Karen! Then my mom talked about taking care of my grandmother clear back in 1954! wow, she had no power chair or all the gadgets {especially this wonderful computer}that I have today. I look forward to finally meet her and all my grandparents I haven't met. Then Brian talked about our love for motorcycles and all the doctors he took me to before my diagnosis of ALS. Last one was Tarra, my daughter talked about my bad night and how Brian was so kind and patient with me. Well, that started my tears and mom, Karen and Brian helped me stop. Well that prompted me to talk about my good night! I slept very well last. My by pap mask was clean and comfortable and it really helps the breathing! A little discomfort when Brian got up to get ready for work, my mouth was dry and the top of my nose hurt a little from the mask. After Brian is done getting ready, he gets me up and dressed and off to work. Tarra is sleeping on the chair and little 3 year old almost 4 in a few days is Cherish. Her and Kelsy have preschool later today. Okay, time for breakfast.
Its 11:30 am and i'm dosing off still. Dang it I need caffiene or something. My mom comes over and brings my laundry, puts it away. She sits on the bed and we talk. I LOVE THIS COMPUTER! She reads to me from a book about President Monson for a while. I love this woman!!!

ALL MY WONDERFUL CAREGIVERS

I have been greatly blessed with good people in my life. I need to start with my wonderful family. When I first started falling and tripping, they were there to pick me up. When diagnosis finally came, we all cried together. My 3 brothers and 3 sister have all helped me any way they could. The prayers and sweet letters on my behave were felt so strongly and helped me overcome my fears. My husband Brian has been wonderful. My mom has helped so much. She's cleaned, cooked and countless other things. She even let me stay with her while the house was being remodeled, which took about 4 weeks. She's a temple worker and just recently helped me go through a session and even being my voice for me. She still helps with laundry almost every week. We all love this 81 year old mother.
In summer of 2009, Ward members signed up to take me to the temple and it was so fun with these ladies. Friends, neighbors and ward members put in countless hours cleaning and organizing during and after the remodel. Tarra, Daniel, and their 2 kids Kelsy and Joshua moved in with us in October 2009. The timing couldn't have been better because that was the same time my legs didn't want to work any more. I couldn't write enough on the countless hours they put in to help run our house hold. Even 3 year old Kelsy is so willing to help. She is definitly a special child. The lawn and garden have never looked better because of Daniel's magic touch.
This year we have hired a cleaning service to help with our bedroom and bathroom. We got an angel named Jan. She cleans so well I don't want to lose her. She will always be a special friend. Then there's Kelsey, a nurses aid that helps on Tuesday bath day and Thursday for a few hours to help take the burden off Brian. Both these ladies are a godsend.
Mandee, my daughter who lives with her husband and 2 dogs, Annie and Ally in West Jordan, also helps when she can. Yesterday she cleaned out our van and wants to clean the truck and car too.

SUNDAY OCTOBER 3RD 2010

Today is General Conference and the apostle Dallon Oaks is speaking on the two lines of communication with the Lord. The personal line and the priesthood line. This reminded me of when Dallon Oaks walked into our sacrament meeting unannounced. It was at the chapel up by the Clear-field Library. I remember that dear sweet woman Debbie Buckley was speaking and it turned into a very spiritual meeting. We attended that chapel in the late 1980's until one was built in our neighborhood.
"To enact gratitude is generous and noble, but to live with gratitude ever in our hearts is to touch heaven." -Pres. Thomas S. Monson
Mandee's little white poodle named Ally had four puppies. The dad is a Yorkshire so the puppies are yorkie-poos. Today she sold the last one. This all started when we bought Dakota, a male red poodle puppy for Mandee's 21st birthday. We fell in love with him immediately. My son Scott and his wife Tara picked up a female red poodle puppy about 6 months later named Isabelle. Isabelle went on to have 3 litters right in our basement. Thats where Ally came from, she was in the last litter, and Annie too. Dakota has since passed away and Isabelle lives with us as well as Chewy, a male from Issy's first litter. Tarra and Daniel have a golden lab named Meg and we have Lucky, a very timid cat.

MY BAD NIGHT

Its 6am this Saturday morning October 2nd 2010. I'm sitting in my chair the only one up except the mosquito and fly buzzing around. Last night was great except I got woke up by my cotton mouth or something I'm not sure. I never know what time it is but I used to have an alarm clock right by my head. I had Brian turn me a little which was fine except the pillow felt a little uncomfortable. My by pap mask was working fine so I tried to go back to sleep. But I couldn't. I could hear Brian snoring. I used to kick him when my legs worked. Then the itching started, first my right cheek then my nose. My hands are too weak to scratch so I moan through the mask. Brian gets up turns on the light in the closet, [where are the flashlights when you need them.] Brian doesn't know what I'm mumbling so he takes my mask off. Ahhh relief, I can scratch now. Brian puts the mask back on but it leaks air all over. He tries to adjust it, bless his heart. Then he turns me toward the window a little, puts the pillow behind my back but its too big and bulky, just not comfortable. I try to explain but can't, so Brian tries to guess and move me over even more. No, I say, so I decide its okay. We try to go back to sleep yet once again. But that won't last because the mask leaks air, if only it was a quiet leak. Its loud and bubbly which tells me my chin and around my mouth are wet.
By then my bladder woke up so I mumbled for Brian yet again. He gently picks me up out of bed and into my chair. I roll to the bathroom while my thoughtful Brian gets the toilet warmed up. He installed a Bayda which has that feature! How cool is that?
That is why I'm up early. Its not 6am any more its 8am. I can't type fast with one hand but at least I can! I can hear Brian sleeping in the bedroom. I sure hope he gets the sleep he so needs. I see better nights because he deserves it!
This is general conference weekend, how cool is that! What a great day with the sun up so pretty.
I am trying to use my eye gaze and I am very slow. Hope its a long time before I have to use it!
Brian showered me today. [it feels great] Except I am too far forward so Brian is going to adjust the chair, or we'll get a new one. He also adjusted my arm rest, it was too high. This is my life.

OUR TRIP TO WALLY WORLD

September 30, 2010. Yesterday, Tarra took me shopping for new garments and Wal-mart. Today it was the same, only Tarra was in a hurry. Well, a trip to the bathroom for me and 3 year old Kelsy in, you guest it, Wal-mart.
Tarra practically ran through the store while Kelsy and I struggled to keep up. Kelsy started holding onto my power chair a few days ago and today was no different. Well, going down the isle Kelsy spotted the pillow pets and stopped to look. Tarra kept on walking and soon disappeared. Kelsy and I started looking but a 3 year old in Wally World you would think it was Santa's workshop! Finally I told her to 'find mommy'. Next thing I hear “mommy where are you”? The more she said it the louder she got. People stared and I smiled, what a special girl, her parents have taught her well, and it worked, Tarra soon answered and all is well in Wally World.

MY WONDERFUL HUSBAND BRIAN

Brian is a kind and gracious husband. Since my diagnosis in April 2008, he has been my hero, picking me up when I fall, dressed me, bathed me, wipe my many tears. The list is endless. By 2009 I was graduating from my walker to a power chair. Retirement soon followed with Brian so graciously taking me to an experts home to fill out the massive mountain of paperwork needed to accomplish this. After retirement, he started the remodeling to help me get around easier. Wooden floors, a nice ramp outside, a new bathroom. With help from Brian's brother Jerry, our sons Danny and Scott, our sons-in law Daniel and Scott, friends, neighbors and kind ward members, this big project was accomplished! Brian definitely knows the meaning of service. With both our dads passing away, Brian stepped to plate helping the needs of our dear mothers. Brian loves to golf, cook dutch oven, Geo-cashing with his kids and grandkids, traveling with his family. One of our favorite things to do when we travel is visit the closest temple and find the nearest cash. The purchase of a GPS unit has been worth its weight in gold. Most of his hobbies are on standby for a while and not even complain about that.
Brian loves the church, serving in his callings ever so willingly; with his last calling being cut short, that of high councilman. Our wise Stake Presidency seeing the need to take care of me. I am so thankful he honors his priesthood. I've had many wonderful blessings and so have the kids.
He doesn't just work at HAFB, he pours his heart and soul into his work and the war effort. Helping others understand their work as well as helping friends and family members get employment there. [including me] Retirement is planned for next summer, which is JULY 2011, yeah baby!
I am writing this September of 2010. It has been a stressful month for Brian. September is potato season which means truck and trailer loads full of 50 pound bagfuls not just once but three times; to fill potato orders for friends, family, coworkers. Not only that his 88 year old mother has been in an assisted living [very unwillingly]. With all the drama she created its taking its toll on him, and also his brothers Jerry from West Point and Roger from Seattle area. One positive note from this is that its brought us closer to Jerry and Roger. The long phone conversations have been so enjoyable as well as therapeutic for him. That old saying, “when moms happy, everyone is happy” has switched rolls to 'when dads happy everyone is happy'! Hence his stress is my tears.
It is coming up to October, may this month be less stressful for us we pray.

MY LOVE OF PROZAC

The first thing I can say is WHAT TOOK ME SO LONG! The kids and my husband will so agree with that! Raising 4 teenagers I could have used those happy pills. I got them shortly after my ALS diagnosis. At first, nothing bothered me. Not even almost crashing in Nancy Lyday's truck and Brian almost hitting some elk bother me. But when Brian started putting me on the toilet something came over me I can't explain. The giggles started; most of times went smoothly but Brian would crack a joke or if he set me on there funny or if he forgot something it was over. Brian had to leave the room until I stopped. We finally lowered the dosage and things improved a lot. Now I giggle just off and on. Prozac is history now. It was replaced by something I can't pronounce. But works great, it lets me close the tears faster and thats just fine.

MY STAY WITH MY SISTER KAREN

Last Wednesday, September 22, 2010 Brian did his yearly potato run. It's too hard for me to travel without my chair so I spent the day with my year and half year older sister, Karen. Oh boy! What a sweet and forgiving person! The day went fine, until feeding time. I got a feeding tube [another story] in June and boy was I ready! We had juice and what she had to do was use this 2 ounce syringe which wasn't a problem since she is a caregiver herself [she takes care of her husband Gene who had a stroke over 3 years ago] but she didn't know all the tricks of the tube to get the juice down and I couldn't help I was giggling! Its a good thing she got a towel cause the juice didn't want to go down very well. And I couldn't stop laughing, in fact to top it off my bladder couldn't hold it! Thats where the forgiving comes in. Along with that, somebody should have written her instructions on all this and more.

Karen read to me for a few hours that day and then we watched an old movie 'American Graffiti'. When we went to leave Karen couldn't get my computer off for the ride home. So the fiasco began but we were prepared for the heavy giggles. All I can say is Karen is an angel.

SHOPPING THESE LAST FEW YEARS

Shopping for me has never been the funnest for me. But when you add two wonderful grand kids going any where with them is an adventure. Little Joshua our only grandson, would let me hold his little hand at 7 months old when his mom and dad are driving. It always seemed to keep him calm. I'm in the back in my chair right between Kelsy and Josh. Kelsey is always good natured and fun to play with. She used to always ride on my lap but not so much now since I got my voice computer. She is always wanting to help me no matter what it is. One day this summer, my daughter Tarra took Josh, Kelsey and myself on some errands in the van. Tarra stopped to get the kids some food leaving me with the kids in the van. I dropped my pen or sunglasses, I can't recall, but sweet Kelsy unbuckled her booster seat and picked it right up for me risking discipline for unbuckling. Kelsy tried and tried to buckle back up but her 3 year old hands could not do it. So thinking grandma could help, Kelsy says; “come on gram ma move your hand right to the buckle” then she proceeded to pick up my poor useless right hand and all I could do was laugh! She did get talked to but in my ever failing voice came to her defense.