You are in a very hard place right now. The notebook is a really good idea. I also got a purse calendar, what with all the appointments. people in and out, trying to keep my kids and my husband's appointments straight, etc.
You and I have alot in common. I found out I was expecting again on Aprils Fools Day last year, then 18 days later my husband got his diagnosis.
I will post some of my facebook entries to my friends and family, that might help. (I hope!)
April 22,2010: "Life For Us Has Changed A Bit"
Dearest Family and Friends:
Just wanted to update you with what is going on in the Miley household.
On April 1st (of all days) we found out that we are expecting our third child. This little one should be due late November to middle of December. We are nervous as we lost our second child just 4 months ago, but are soo excited to be welcoming in a new little one into our lives.
Dear Ones,
My heart is heavy as I right this to you.
Jason has had some health problems since December and we finally know the cause for his health problems.
In December 2009, Jason noticed that he had weakness and tingling in his left hand. He didn't think much about it, just thought it might be a pinched nerve or something of that nature, but it slowly has progressively gotten worse. He now has lossed muscle mass in his hand and has loss fine motor skills. He cannot unscrew a water bottle cap, button or unbutton the buttons on William's shirts, hold a pen (as he is left-handed) and sign his name.
In January 2010, Jason started to have a slurr in his speech. At first, it wasn't too noticeable, but now you can always here it. Some days are better then others. It sometimes sounds like he is drunk or on some type of medicine, but I assure you, that is not the case. He also has a hard time with his emotions. If he has a thought or a sentence he wants to convey, he will laugh first. This laugh is uncontrollable and he will have a hard time getting it back under control, just to get the thought or sentence out. The same can be said in reverse as for crying and tears. So he is finding texting to be an easier form of communication for him.
In February 2010, Jason now sometimes waddles as he walks. He gets out of the car like an old granny, and he finds it hard to get off the floor from playing trains with William. Its like someone covered up his hands and his feet and now he is struggling to get up off the floor.
In March 2010, Jason started falling. Its like a clutsy, clumsy type of fall, where Jason can't catch himself before he goes down. He slipped on William's toy and fell and hit his head against a wall and got it scratched. Another day, within a 24 hour period he fell 3 times. Another time he bent over to pick up William's toy and couldn't come back up, but felt himself continue to roll forward and fall and couldn't brace himself to catch himself before that fall. Because of the falling and our 2 year old son, I knew I couldn't leave them alone as I went to work, for safety reasons, and so I packed them up and moved them back to my parents house and started the long commute from my parents house to work where we use to live (1 hour commute).
Getting Help For Jason:
In March 2010, I took him into XXXX ER. They did an EKG, blood work up, a CT scan and ruled out stroke, brain bleeds, and brain tumors, but still had no clue as to what we are dealing with, so they referred us out to a neurologist. We went to see the neurologist, Dr. XXXX, who said he had no clue as to what this was, and ordered an open MRI. We went back for the results and he said that he saw nothing on the MRI, and that this was probably a stress reaction and that it should probably go away on its own, and said lexapro may help, but to come back and see him in 6 weeks.
We didn't agree with assessment, so we pushed forward.
In April 2010, on Friday - April 16th, I took Jason to another XXXX ER in hopes that they would send him up to neurology and start finding answers instead of looking at waiting another 2 or so weeks for an appointment as we really needed answers. They basically said that because we are uninsured, and that they know Jason won't croak today, and that we are not XXXX County residents, that we weren't thier problem and sent us on our way with a referral to see an XXXX Neurologist. I called the number and XXXX's first available time was May 9th, but they could get Jason into see a different XXXX Neurologst the following Monday (April 19th).
Getting Answers ForJason:
On Monday, April 19th, Jason saw Dr. XXXX. He listened to the history of Jason's illness, did a thorough neurological exam, and said he was pretty sure this was a motor neuron disease, but wanted to do one test to make sure. He did an EMG the same day, in which he sent electric impulses to various parts of Jason's arm. He then stuck a needle into various muscles on all four extremities to watch the nerve reaction. This test confirmed what he thought it was.
Jason's Diagnosis:
Jason has what is known as ALS, Amyotrophic Lateral Sclerosis, or what is more commonly referred to as Lou Gehrig's Disease. There is no known cure and it is fatal. Average life span is 6 months to 2 years. The doctor we saw on Wednesday, who only deals with ALS patients, said that Jason's is progressing a bit more rapidly, and with his best educated guess, thinks Jason has 2-3.5 years. There is a drug called rilatek, that costs $1,114.19 a month, that can give Jason 2-3 more months but that is it. Basically they treat the symptoms to make it more comfortable for Jason. They have drugs to help with excessive saliva, walkers, canes, scooters, wheelchairs, and as the disease progresses, feeding tubes, and suction tubes to suck out excessive saliva so that Jason's doesn't choke.
The doctor we saw on Wednesday, at the XXXX Neurology Clinic, said that if we want to do things, that right now is the time to do them, while Jason still can. So I have quit my job as my time with Jason is oh so precious and we are planning on going on some trips. To maybe rent a condo on the beach and play in the sand with our son. To maybe go on a cruise, or go to Walt Disney World. To take William to see Thomas the Train, Bob the Builder, and the Zoo. So we are making plans to shoot the moon and make alot of memories in the short time we have together.
We have an appointment on Monday at 8am to go to the MDA clinic, which they do each Monday to house several services they do for thier patients, so they can do them all at once, instead of having the patients come in for several visits. It allows the patients to spend more time with thier families as time is soo precious now. So Jason will see a speech therapist, a therapist to help him figure out better ways to swallow and avoid choking which might include working on his diet, an occupational therapist, a physical therapist, and a social worker who will work with us to fast-track Jason's disability and get us other services to help with the funding of Jason's treatment of care.
So we won't be on fb as often, as we have alot of plans to be made. We will try to update as we can, but if you want to get ahold of us, you can call or text me at: # or text Jason at: #.
Never in our wildest imagination did we think that when we said our vows, that we would not be growing old together and watching our children have babies of thier own. Never thought I would be doing some of the things I am facing in my 30s.
So hug the ones around you, hold onto them, because life is oh soo precious, and you never know what tomorrow will hold.
*hugs* and Much Love To All!
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July 20, 2010: Update on Jason's Visit to the ALS Clinic
Today Jason had his appointment at the ALS Clinic at Wishard Hospital in Indianapolis. We were there from 7:00am till 1:00pm. It was very extensive and thorough, soo informative and helpful.
Jason's blood pressure has gone down. It is now 145/77. His weight loss as also started to mellow out some, as he weighed about the same as he did about a month ago. (Overall he has lost 30 lbs from March until now - July).
His doctor came in and did his neurological exam and assessment to see where he was and the progression of the disease and how to best help Jason.
He had a dietition come in and ask about his eating habits and such. Jason was relieved and excited that she didn't put him on a diet or change his diet in any way.
A speech therapist talked to him and showed him ways on how to swallow better to minimize choking. Talked of drinking thicker liquids if the thinner liquids are giving him some trouble with choking. Also, talked of eating more casseroles, or meats with gravy or liquid of some sort, in order to help him in swallowing, and minimizing choking. He also talked to Jason about his communication. They will be setting up an evaluation study to see which communication device would best help Jason at this time. There are some small "computers" that have big pictures of things on the touch screen, in which he can tap on the picture and it will voice what he is trying to tell or ask us, etc. So this is encouraging to us as his speech is declining.
A resperatory therapist came in and measured his inhaling and exhaling breaths. They ranged from 50%-80% capacity and with his sleep apnea they are concerned with his breathing. So they are going to send home a pulse ox. meter for Jason to wear through the night to evaluate his breathing when he sleeps. If it gets below 80%, then he will qualify for a Bi-PAP breathing machine that he will wear while he is asleep.
A rehab specialist, equipment specialist, physical and occupational therapist came in and evaluated his physical mobility. They deemed that he is in need of a motorized chair, as they had him walk 30 feet to and from and by the time he got back he was out of breath. Doctor also thinks he needs a walker with wheels, more geared to his size and his needs. They also think that we should get a "sling hoyst" for the home. Basically, if you think of how mechanics put engines into vehicles, its the same concept. So when Jason falls, we can put him in a sling and then crank the hoyst up and place him in the bed or chair and it would be alot easier on the caregiver. They also think he will sleep better and do better in a hospital bed. So he now has a prescription for a hospital bed, motorized chair, sling hoyst, and walker with wheels. So someone will be coming out to the house, measuing Jason to where all of this will be built to Jason's size, needs, and specifications. They will deliver them to the house and set them up. They will also have homecare come in and train us in how to use the sling hoyst as well. They also think he will benefit from leg braces. So they did molds of his legs today and he should get his braces sometime next week. They should also help with his falling as far as give his legs more strength and not allowing his legs to buckle under him as well as have his leg and feet at a 90 degree angle so that his toes won't be so prone to catch on things, as well as make him walk more "heel to toe". They also gave him several aids to help out at the house as well as suggestions in how to best help him in grooming and in eating.
Overall, a very informative and helpful visit. Next ALS clinic visit is for November 30th.
After all of this, we went out to eat. And while there, Jason fell and so the waiter had to help me pick him back up.
We are soo very tired, but feel like it was a good day and very informative. We also feel that we are going in the right direction to get Jason the equipment and help that he needs as this disease progresses.
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January 25, 2011: An Update On My Sweetheart
Jason's General Practioner has referred Jason out to Hospice. Back in October 2010, his team oh physicians were recommending a feeding tube.
Jason is nearing the end of being able to communicate with his voice, as well as his last steps he will take on this earth. I now feed him as he is slowly losing his abilities one by one. And so, we needed to know answers as to how we transition, how to we care for Jason once he is completely bed-ridden. These and soo many more questions we had concerning placing the feeding tube, hospice care and the physician's shift in thier role when hospice takes over his care, etc.
So today Jason had his visit at the ALS Clinic. There he saw a team of doctors, nurses, therapists, and specialists in hopes of getting answers as to what to do and how to transition to this new phase in Jason's life.
It looks like the plan will be to get a consult to set a surgery to put in the feeding tube for Jason at XXX hospital. He will be in there for 24 hour stay to make sure that it is in well and that there are no complications. We also need to get the attatchment, called the "eye gaze" to his communication device.
Once those things are done, then we need to set his ALS doctor as his hospice doctor, and he can still see his normal GP for anything unrelated to anything that is not related to ALS. Hospice will come in soo many hours of the week and help with his daily care as well as his end of like care. As much as I hate dealing with the task of Jason's care as he enters these final chapters in his life, it is also a relief to understand better how best I can care for him, and what steps and direction is next and where to go from here, now, as he is slowly transitioning to his final steps here with me on this earth.
Just want to make sure I am doing what is best for, and what Jason wants, and I think we have a better idea on how to do just that.
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Its amazing how time flies with disease and how fast things can change. I hope you have a good support system of people around you. They will become invaluable as the disease progresses. Feel free to PM me anytime. *hugs* <3
