Sunday, May 26, 2013

Daily Life with Bryce -

Hope is the greatest. I will never give up hope.

Fun first ride at Fred Meyer.
Thank you FSMA for sending
us the next chair!!
Many say this devastating disease takes a massive toll  on families. Through months of advocacy,  assistance, support, and new friendships and communities have been established.  - Spinal Muscular Atrophy (SMA)  changes a mom for the better, we have to change or we could not cope - we have to stay positive, look forward, forgive the past, and continue to adapt to the changes of a child's abilities.   The first worries of motherhood  seemed like big issues in life, however, they were really are just tiny things compared to now - but I can't change the past - I have become a stronger person now - and I am moving forward in life to cherish every moment with Bryce.

I  joined MOPS - an  mothers group in March - a fantastic group of mothers and mentoring mothers who help each other, give perspective,  share stories, and recently have been helping with meals as we struggle with feeding Bryce and now they are coordinating respite care for me.

 This week he averages  18 lbs. Our goal is 20 lbs by his 18th birthday.


 Everyday I look at my son and think- what a blessing, what an angel!!  .  Children are miracles -   Family is the most important thing in  life - it is something so precious and so beautiful. We miss daddy right now very much.

I agree with an SMA mom regarding the fact that Bryce  needs to use the g-tube for nutrition and seems to only plays with food and bottles. Last night, however, he drank 3 oz of his bottle  by mouth. Way to go little one.

 It appears, as others have said "two things are probably going on with feeds. He is probably feeling himself at risk or has had chokes while eating so he's losing his desire because it's scary. It is also probably physically really hard for him. This in turn means he's probably not getting enough calories which makes him tired and have less energy to eat orally. It's a vicious cycle"  Therefore, I have to make eating fun again.
sweet potatoes for baby puree
I spend my days  creating his world for him as he can't get around by himself. I make ramps and adapt games with cardboard and duck tape. Its fun making food, doing baby massage, exercises, going for walks, singing songs, playing games, riding around the house in his chair -

Eating, listening to Raffi and looking
at gorgeous flowers Daddy
brought home last Tuesday.
There is no place like home - Steve and I have provided such a great place for Bryce, its a comfortable quite home with so much room to play with gorgeous gardens. Bry Bry and I love having our new friends over.

It is amazing and joyful to see children play so sweetly. 

I wish I had these moms and mentor moms in my life sooner from MOPS and had the home nursing months earlier.  - sometimes I feel  too little too late. I hope not - we miss family time immensely. Finally, I am getting rest, learning the skills and knowledge of parenthood, finding time to relax, starting to enjoy life again, and have peace. 
FSMA sent us a wagon as well to help him
and us explore the world in new ways
 

 My confidence is growing day by day on how to use the g-tube - mostly trial and error - self taught, neither Steve or I were trained. Its great though the home nurses are starting to help us, and Early Intervention steps up to fill in these gaps and loans me books on tube feeding etc. Other times during week and on a monthly basis, I am scheduling appointments with Shriners, our Pediatrician, nurses, counseling, and then I track and order medical supplies  monthly weekly and monthly is also part of my life.  Its been a good break these days when daddy takes care of Bryce and I can go out on my own.

When he has a cough and mucus build up I have to use the cough machine and BBG twice a day.  I use both pretty often though to attempt to keep him mucus free.

My new schedule though now during nap time, that will be my time to catch up on sleep and exercise.

 Some great advice I received, week is - "you've got to let it roll off your shoulders and move on."  In February I came out of the fog of sadness and really am finding my waynow - however, still living on 2-6 hours of interrupted sleep makes life  difficult and does cause me to stress out of the tiniest, stupidest things. The overall consensus, .that I am doing a great job - I am an awesome mom.  

Thanks to everyone, meditation, and exercise I can  be more relaxed and able to handle what the days bring. The only way to accommodate this lifestyle is to change, love and forgive, keep moving forward and STAY POSITIVE .
 This reminds me of some favorite lines of a son from my favorite movie "Beaches" - You've got to laugh a little, cry a little, and have the blues a little, that's the story of, that's the glory of love"

Wednesday, May 15, 2013

Hi Mama!!

Look at that face with food on it. What an improvement in eating. Way to go little man!     Bryce weighed this morning on our scale 17. 15.6 lbs. That's the most he has ever reached. -                                               Its a challenge that he only eats 4 oz at a time, but he is hungry and does want food every 2.5-3 hours. This is great. Mommy and daddy are tired though.  

 I couldn't resist putting these photos on the blog. He is so cute and fun everyday. We have been doing lots of reading and puzzles before, during and after we eat. He is really excited about uncle Shaun's zoo book.  It has pop ups and makes many animal sounds. 

I am off to sleep now. He ate at 930pm and fell right asleep as we played hard today, next feeding is at 1230 then thankfully Steve will do the 3:30 and I will do the 6 am.

My MOPS group is amazing.  The food they have been bringing during this catch up weight period is such a blessing. We are so grateful for this support and so blessed to have an angel in our life like Bryce - he just lights us up with love and joy! My friends and new friends give me much needed support and care that I need to regain my confidence and courage.









video


Friday, May 10, 2013

Brighter Days


 
Through challenge there is victory -

Bryce weighs this morning 17.066 lbs. I did it.  We even reached this goal without the feeding pump. I just couldn't figure out how to get so many calories in at night without using 3 bolus feedings. Our next goal is 20lbs so he is closer to 3-5% on growth chart.

My non dairy diet is working.  He went from 16.6 on May 2nd to 17.6 lbs this week.




 Some of you know, on top of everything else, some SMA -moms in one of my online groups, started being pretty judgmental and cruel this week. - Others chimed in and others told me that's how it goes in this world.  Try to not take it personal. I have a hard time with that and so I have made some adjustments to this blog recently and I am trying to be clearer in my wording - I still think its mean for other mom's to tell me "I am killing my son", or I have "crappy doctors" or that "I don't fight enough to extend the life of my son." It is our choice of quality of life for our family and for Bryce and we do feel we have an excellent primary care doctor, Dr. Nicols. He is a pulmonologist and has worked with SMA children before. He will tell us when Bryce needs to be on Bipap or we need to consider changes in our care plan.


My blog about our journey is not for sympathy or to complain, - in all reality I have hoped this blog has been  a way to share our story and there many happy stories. There is also life with SMA. We don't have other children at this time. We are all about Bryce - so I think some SMA parents perhaps forget that they are blessed with fertility and healthy children -

Bryce does not fit into the regular DX of type 1. He is stronger and as a result of us choosing to not to do BIPAP or to not do vivonex formulas at this time, that doesn't mean we won't - that doesn't mean we are shortening our son's life. We don't live in fear of change - we are very intelligent parents who don't believe a cough assist machine strengthens muscles it only assists a weak cough and is helpful during an illness, it may be more helpful when he is weaker to prevent illness, but for now, our son can cough and breath very well on his own.  I wake up every morning excited to see my baby's smile and coos, and I thank God for each day with him.  

For the time being our way to care for our son can be either palliative, non-invasive, etc and we shouldn't have to justify ourselves to others.  We should all me loving and kind, but apparently there are moms out there who feel its life or death - I learned that I must be naieve - as all new parents are at first, so that's apparently my first big lesson in being a mom.. Its not fun being bullied on the internet - AA Diet website, when I was just asking for help with some recipes, high calorie food/puree etc.

Bryce excels in his social skills. He is talking and babbling - making all kinds of sounds - he loves to kick and reach his hands over his head.. he stacks object and puts cups together, he splashes all around in the tub, he loves reading and turning pages - he loves to laugh and play. he loves stroller rides....going to zoo...I love being a mother -I love my baby so much.

Many of you know with Steve being out of town, its been pretty challenging but with help from friends its been more bearable. Cousins came over to garden this week. My  amazing MOPS group set us up with meals for awhile. This is very helpful on the feeding schedule we are on.  These days are gorgeous and sunny. We are inside most days but that's ok. Bryce is eating by mouth again and accepting his bolus feedings even better and with more volume.  I am learning to live with little sleep like last night being awake from 1:45 - 3:30/4 am -holding, feeding, and comforting my son..

Its true, there are not so many resources in our state and no sma organization- we just fall under the umbrella of the MDA (Muscular Dystrophy Association.), so if there is ever a reason for starting a non-profit for SMA kids and other kids with rare diseases...its now...its up to me...I must make a change. So far, I am starting little by little- I am  advocating for my son in Salem and meeting with local representatives to bring awareness and to ask them to fund EI and state programs even more. I am learning

I found a lawyer at the Oregon Disability Rights Association who kindly took our case to appeal his denial of developmental disabilities. This has been huge issue for us, we have been unable to get any care from the county and from the state because they never have given an SMA child this before and instead of reading the facts - they prejudicially denied us. Other parents have fallen under medically fragile programs and if you live in the state of Washington, they seem a bit more accustomed to children with SMA.  Fortunately, by having a legal representative they are willing to look again as his new Early Intervention Test scores and the letter from his neurologist at Shriners states that SMA DOES originate in the brain - so as far as the Oregon Administrative Rules - our son only needed to have documentation for which I read back in January and knew my son met:  the two areas of disability such as self care and Motor Skills As well As the disease originating in the brain. My question now since this is proven...will the state of OR follow through....will they back date some financial aid because they so quickly dismissed our application?? When will help via case management...other resources, and respite care begin?

We hope our appeal of federal SSI on the compassionate allowance is approved in the near future. We were denied in November of last year..  This will really help.

We hope our doctors will also start too get paper work in so our insurance can approve some nusing help. Unitl then, we are on our own, or paying out of pocket. I don't want to leave our beautiful home, I can't exactly go back to work. We may have to do another fundraiser this fall to raise money for the nursing, continuous medical pile ups, and and so on that are making our financial situation more difficult.  I love our home and being able to provide a comfortable and healthy place to live -

I feel that we have asked so much of friends and family its time for the state and federal programs to start kicking in and getting approved like all the other SMA families.  This will be great.







Saturday, May 4, 2013

Post PICU

Photo 3 weeks ago with sweet cousins
OF course we were discharged from PICU with  Bryce vomiting his pediasure and that continued for several  days after.  Since Randall's Children's Hospital did not send us home with a pump and did not get a feeding plan together for a non-dairy diet such as the AA diet many SMA children are on, we were very frustrated being released and feeling like we were set up to fail at home.  With perseverance and knowing that my son is pretty strong, we got through the first few days of breathing issues and learning to use the cough machine and BBG.  He got better fairly quickly (thank you all for your prayers).

On May 2nd I took Bryce in for his  15month check up, and while I was so happy to share some of his new tricks (kicking, grabbing, talking) as Bryce is moving better than ever and developing socially , BUT the doctor  wanted to hospitalize Bryce for his weight.  How can I not be heart broken. Why is everything with doctors and dieticians a negotiation  - I know in my heart being in the hospital is far worse than being at home.  I asked my pediatrician, "can you put him back on IV so he won't throw up so much?" he said no.  "What is the difference between at home and in the hospital?" He replied, "they can figure out a feeding plan that works."

video The doctors still wanted to re-hospitalize him.- I replied said no-way- we have to get him off dairy and figure out a new plan - they didn't do it at the PICU when we asked so why would we assume they will help if we go back..   I know its the milk. Who wants to drink milk when they are sick anyways.

 I am learning to explain better to doctors that they  have to set parents up to succeed at home not fail. I suggested, no dairy, I'll try soy since I am not comfortable with vivonex or tolerex (amino acid formulas that may take time for a child to get use to - time that we don't have when our son is so tiny and thin - I will  learn to  make high calorie foods / purrees, and give a bit of the soy formula at night either bolus or via feeding pump so we can get his weight up quickly.    I suggested, to send us a feeding pump, a nurse, teach me how to calculate his protein, calories for catch up... Our PCP agreed. 

  Bryce is NOT a typical SMA-1 child. He is much much stronger.  He is on the mend of this illness!!
May 2nd. Bryce's weight at 15 months - 16.6 lbs.  -5%  uggh....  sigh.....

I believe in my doctors, Steve and I feel confident with our choices. We wish there was a bit more support among mothers of SMA though. The problem is that many think SMA-1 children can't move their feet and arms and don't understand how strong our son really is. Steve and I have always felt that the love and energy we put into his daily activities, the music, dance, play to stimulate physical growth has perhaps been a reason for his continued development. My choice to be at home with him may add to his success. We don't see much regression in the disease except the obvious physical difference with kids his age ,his weight, not wanting to eat by mouth especially when he is sick but overall Bryce is strong for what the doctors predicted back in September. Goes to show me that the power of love and prayer really does exist.

Some local SMA-moms have connected with us and will be stopping by later in the weekend.

We know when our sweetie is sick , his condition is a different story, its pretty scary. We realize that the disease can degenerate slowly or rapidly and each child is different.  My biggest fear is my son losing his swallow.  The next, his getting pneumonia from either a cold or from aspirating. These are real fears that doctors have discussed with us - Again, we can't live in fear though. We have to embrace change, trial and error, and be flexible.

May 3rd a home nurse came by. Educated me on some feeding and positioning of our son.  I was so exhausted, like when Bryce was first born, it was a bit of a blur. At least she talked me though some feeding ideas.

May 4th  We got our feeding pump. The  nurse spent 3 hours setting it up, teaching me how to use it on a continuous 8 our drip at night.  I hope Bryce can gain some weight back with this overnight system. I pray that I can get more rest as I have been feeding him every couple hours, 24-7 for the past two nights.

Currently, I give Bryce a few bottles of soy formula because I need to get the calories in him. I am unsure if I should tube him food at night or just the formula - since Wed. I stopped with all dairy he has not thrown up at all. He is starting to gain weight.

I finished Bryce's one hour feeding from 230 -330 am.  I'll be awake again at 6:30 for the next feeding. I didn't hook him up to the pump tonight. I was exhausted. We will try tomorrow and I hope this helps. I hope he doesn't choke and aspirate in the night - or that's what the doctors tell us to watch for. I can't live in fear - we have to just face each day and go with it.