Friday, November 9, 2012

RSV-Synagis shot

Just found out how much our co-pay is with the RSV shot (synagis)... OUCH!  Talk about pharmaceuticals getting rich!  
For those of you that don't know what Synagis is, it is used in the prevention of respiratory syncytial virus (RSV) infections.  It is recommended for infants that are at high-risk because of prematurity or other medical problems such as congenital heart disease, or SMA. 

All the doctors were "yes, if you get approved, get. this. shot".  What they don't tell you is how much it is going to cost.  I mean we aren't in the dog house poor or anything, but we are trying to save for a new home that will fit the needs of a special needs boy.  So it was coming down to a shot (where he still may get RSV) or a home (where said boy will live and flourish...) After talking with my son's nurse and explaining I can do one or the other but not both, and that I was leaning towards not doing the shot she found some funding for me.  So we are ok till at least January, then hopefully the nurse can help us find more funding. 

So do you want to know what much this magic shot cost before insurance? This is based on Declan's weight of 15lbs.
$3000 per shot, and Declan needs 5.  Our insurance will cover 80%.  That's $600 a month we need to cover.  Talk about highway robbery, and at Christmas too!  Luckily the funding the nurse helped us get drops that copay down to $50, till mid January. So if we can get funding for February and March we should be good till next year.. and I don't even want to think of next year yet.

Our shot is ordered and we are planning on getting it next week.

If you want to know more about this shot you can google it or go HERE the dark side of Synagis if you want to be talked out of it...

*Just a note to friends and family we are out on the gift giving this year, but we wish you well.*

I hope this shot is worth it.  We wish you the best and if you are following the path of the SMA journey we wish you luck.  May we find a cure soon!

Declan went to the voting booth with us.  His first vote!



Bullies

Nov. 9, 2012

Today, I wanted to talk about bullies.  My friends and family will be familiar with the situation my son has recently faced due to several topics on facebook.

Back on Oct 29th, I got a call from my oldest son "D" at school.  He was laying in the nurses office, because two boys in his grade had assaulted him.  I asked which boys and where they were.  As it turns out, it was the same two boys that had hit "D" earlier this year for no reason until a duty officer from recess stopped it.  The boys were currently in talking with the principal.  So I called my hubby and we met at the school as fast as we could. 

This is the story we received:

  He was walking out from lunch and didn't notice the two bullies walking by him. They started pushing him into a dirt pile when his hand flew up and knocked a sandwich out of one of the other boys hands.  Things escalated from there, and D took off running and tripped by the playground.  When he got up, the two other boys knocked him down again and then one sat on him, while the other kicked him on the ground. They eventually stopped and went inside and later the duty found D hunched on a bench...

Now, suffice it to say, the hubby and I weren't very happy (still aren't).  Bullying has been an ongoing problem since D has gone to this school.  It makes me happy that we are planning to move soon and I am hoping that the next school will have better anti-bullying policies than the current one.

We ended up talking with a sub VP and eventually the principal.  They stated since the boys are minors they couldn't discuss what was being done to the two bullies but we are sure to hear about it through the grapevine from our kids...  They couldn't give us any reassurance on our son's safety.  Now does that seem right?  The sub vp suggested that D just stay away from the boys and stay with the duty officer during recess.   I'm sorry, but why does my son have to be punished and not be able to play free at recess while these two little (insert inappropriate word here) can go play with their friends?  That doesn't seem right in my book.  Why not make these boys stay in from recess or make them stand by the duty and watch their friends play.  Something is wrong here with the system and this school just doesn't see it.  Again SO glad we will be moving.  You can't show a person that is blind to the world unless they are willing to look. 

We took D to the docs because he was complaining that it hurt to breathe and his lower rib looked a little bruised and swollen.  After a doctor's visit and a xray he was bruised but no breaks.   Just what we need another doctor's bill in this family right?  I mean come on! 

We talked with D and made sure he was ok to go back to school the next day.  We told him if he sees those boys at school to call us immediately, and we would pursue it further and possibly bring criminal charges against the boys. 

Well D had two good days without any bullies.  The boys were back in school by the third day.  A 2 day suspension was the boys punishment, after talking with the district a 3 day suspension is considered "extreme" and in 95% cases any suspension at all works well. 

Lesson here is being a bully and beating a boy up gets you 2 days suspension... yet no suspension from recesses.  One bully then tells the victim they beat up "thanks for getting us suspended now I can't play with my friend" and the other bully tries to antagonize the victim with words.

Looks like these boys fit in the 5% category...
To hit the dead horse more... the sub vp called the next day to see how the doctor's appointment went.  He said "well at least it isn't anything serious..."   I went dead silent on the phone, I couldn't believe him.  This is why this country has bullies, they don't think it is serious!  It happens all the time, but what does anyone do to stop it?!   I use to really like this school, but now I wouldn't recommend it to anyone. 

My son is smart, funny, and nice.  Even though he would be classified as a nerd or geek, look at the world.. who is running it?  The geeks and nerds, and where are the bullies in the world?  Jail, or local crappy job.  I just hope D can stand up and rise above the idiocy of his peers and the school staff.  And I hope he knows we will stand with him till he can stand on his own.  Pick on me all you want, pick on my kids and you are going to lose a body part.
D wearing Starwars shirt and reading Ender's Game what a geek!

D being a good sport and trying on a suit.

Declan update


Oct 26, 2012
Declan update:
Got a call from the Genetic counselor. We had a deletion test done on Declan for SMA, and it came back Negative! This is what she said:
This rules out SMA caused by problems with the SMN1 gene the most common cause of SMA. Since Declan has symptoms of SMA this test does not mean he doesn’t have a kind of SMA, just not the most common type. This does mean that medications tar

geted to SMN1 would most likely not benefit Declan, but continuing with the same respiratory, dietary and orthopedic management will still benefit him. I know that this result puts you back into the unknown as far as a diagnosis, and while on the surface it seems that a negative test result would be a good thing, sometimes not having an answer is much harder. We are looking into a couple of different new genes on a research basis for Declan as well as continuing to look at the SMARD gene.

So we are back at square one with no answers.. which is good? So on we go into the unknown. Declan is just too rare, but we love him anyway. :)

jail bird baby.

Friday, October 19, 2012

The Inner Workings

     If you want to test your relationship I have heard that building a home will do that for you.  Psh Never-mind having a son with special needs, you can get through that but the process of building and the choosing and the fighting, can and has split couples up.  We aren't even building yet, and we are already fighting about location and which company to choose, etc.  It is actually quite difficult to build a home for a child that will most likely be in a wheelchair.  There are a lot of choices, and things you can change on a floorplan.. for a price... knocking down a wall here, making the hallways wider, the bathrooms bigger, hard floors instead of carpet, and don't forget we will need a bigger garage.  We have almost narrowed it down to what builder we want, but I would really like to stay in our city we are in now, but that too also comes with a price.
    If you have a child in the same situation let me know what you have done to improve your home. Thanks!

We live in multi-level home, we have 3 staircases inside the home.  Staying in this home is not an option for us for matter how many lifts we got.  So the homes we have been looking at are ramblers.  Here is the kicker, we have to finish the basement for D&K.  I would love to have a room for Declan's therapy too.  I want this to be our last home, so it needs everything!  So now all we have to do is win the lottery to get everything we want!

If you want to look at the floorplan we are leaning towards click the link below. 
House

The two bedroom in the front and the main bath we would combine and make into a mini suite for Declan, and his therapy.  Widen the hallways and doorways, and put a ramp in the garage. The basement we would have a kitchenette and that would pretty much be D&K's domain.  It is a really pretty home, and I just hope we can do it.  It would be really nice not to have to deal with stairs.

Again if you have gone through this process let us know what we are missing.  We are learning as we go.  I am trying to make it as nice as possible for ME... I mean our family...

Also if you know of any grants to help with us getting into this new home, let me know ASAP.  I found tons to help improve our home, but none for helping getting a new one.
Thanks!!
Hug your loved ones, and wish and hope for a cure soon!



P.S.  Declan is doing great and is loving his mom.  I mean not even the grandmas can hold him... it doesn't free up a lot of time for me unfortunately but that's ok.  It takes me longer to do things, but Declan is just so damn cute I can't stop holding him.
Thanks!!!


Monday, October 8, 2012

Dreams and Wishes


It's funny how fast dreams can change or even wishes.  We got pregnant with our last child, I wanted a great pregnancy, I got that, no sickness what so ever, but Declan didn't kick the whole 9 months.  Declan was born and he is gorgeous, but the doctor noticed something was  wrong.  Then you know the rest.  So we went from dreaming of our baby rolling, sitting, walking, growing up to a healthy strong man with a wonderful life, to just having our baby live, a worthy life, not a life full of pain and sadness.  I think if I saw my baby sit up by his self I would burst into tears. Yes dreams change quick, but every time I look at our baby boy I can't help but to dream big.  My dream and wishes are for our children to grow up, become independent, go to college, have a family of their own, live a long healthy life.  So I am going to try to keep on doing that. 

We are still feeding him every two hours, he is only taking 90ml which is 3oz and we are bumping it up to 100ml now.  He likes his veggies, and won't eat fruit or the meat baby food.  We are talking with a dietitian now to help us with his feeding, we (parents) are still holding out on feeding tube.  I want his life to be as normal as I can for as long as I can. 

We will be starting on a cough assist machine soon though.  A cough assist machine is a way to clear the lungs.  SMA babies have a weak or no cough so the machine helps push in one breath and brings that one breath out.  It's like one big cough, this will help if Declan gets a cold.  Just another thing we didn't dream of.. machines all over the house... well these kind of machines. 

I am having a hard time thinking of where I should draw the line with machines and overall life support for Declan. I don't want him to have a hard life and a life with machines, but every time I look at him how can I not be selfish and keep him here as long as possible.  I think that is something we will have to think about later, if the tables turn but right now he is doing good, and is happy still breathing on his own. 

I know the doctors want us to plan for if things go worse, but I have not learned nor do I want to learn how to plan a funeral for my baby while he is still here and breathing.  I have looked but I can't dwell on it cause I just end up crying for the rest of the day.  I did want to add a video of beautiful song that I think would fit us "IF" the horrible happened. Grab tissues!!!    Coleen McMahon - Beautiful Boy

I hate the song yet love it, is that possible?  Told you to grab a tissue.  Like I said I hate to even have to look into things like this, and I don't wish it on anyone.  So give your babies kisses and hugs and hold on tight.  Ok lets move on to something else cause this blog is starting to get depressing!!

Here let me add some cute pictures of one of the cutest babies ever!!



PT time!
Happy Bumbo time

What's up duck?


Friday, September 21, 2012

Our First Cold

Sorry it has been so long since my last post. Things go from slow to really busy here all the time. So here is an update from our family.
Declan being sick

      So most of the readers here are probably wondering why I am writing about a cold.  I mean, for a normal healthy child/person a cold is nothing, it's just a pain in the butt sickness that comes every year and a few tissue boxes later you are back to normal.  However, imagine getting a cold when you already have a hard time breathing, and you are too weak to fight the cold off.  This world loses a lot of SMA babies to pneumonia that all started with a cold.  We tried so hard to keep Declan healthy as long as possible.  Then, School started and with that of course, the colds came home too.  It hit everyone in the family.  Declan made it just under 7 months before he got sick. I think we did rather well, or we were just lucky. 

Out of all of us Declan recovered the quickest, which is great to my little ears.  We were worried about how a cold would effect him. It took about a week and a half for him to get back to his feeding schedule.  He still has a cough which I had the doctor look at just to rule out pneumonia.  We are still keeping a close eye on him, but it looks like he is in the clear. 

     The doctor feels that with the cold, and RSV season coming, it would be a good idea for my hubby and I to get trained with a cough assist machine.  This is how they explained it to me.  It pushes one big breath in and then pulls that big breath out.  I know how to break up the yucky stuff which we do from time to time, but now it looks like we will get a machine to help us out.  I can imagine what this is going to do and I hope I don't lose my lunch in the process.  The things we mothers do for our children! 

     I honestly can't imagine this world without Declan so if I have to do some dirty jobs to keep him here then I will.  He gives us so much joy, and he is the cutest baby (maybe I'm bias...) His expressions are great and I don't know if it is because I am older or what but I have a lot of patience ..... well when it comes to Declan....  I am sure my hubby feels the same, and D&K just love him.  Declan's face just lights up when they come home from school.
Declan with Mommy.

Declan at his 2nd sleep study












    We also had our second sleep study done with Declan.  He didn't like getting hooked up to all those wires again but he did well.  We received the report and he is doing really well, better than last time, and the doctor believes he doesn't need a BiPap.  

 


  We have a scheduled doctors appointment with Declan's neuro docs and I am hoping they have an update on where we stand with diagnoses or give us something we can work with.  We continue with physical therapy and occupational therapy and it is helping.  Declan's head is becoming stronger and his trunk (chest and tummy) are becoming stronger too.  We still have a lot of work a head of us but we are seeing results.

      Keep sending good thoughts our way and many well wishes.  We hope we can make it through this winter without getting sick again.  Thanks to all who read our blog and I hope anyone needing information about this disease can find help and I hope I provided you with enough info to get started.  May we find a cure soon!


Tuesday, August 28, 2012

Directions/ Why it's Okay to Have Hope

Declan wrapped in a blanket from B4SMA

 So when I wrote to Families of SMA and requested an info packet they were all to happy to help.  In the packet were these magazines which they publish and send out.  It is full of information about SMA.  Research updates, info about the upcoming conferences, fundraising material, etc.  One of my, I don't want to say favorite part but it definitely means a great deal to me is the section that is dedicated to the children that lost the fight but are never forgotten.  It's called loving memories.  It is full of stories about other parents that went through the same thing we are but weren't able to fight against the odds.  I read these stories and I am brought to tears every time.  We are losing so many babies to this disease, it is unbearable.  My heart breaks every time I hear about a new death, but it makes me hold onto my hope that much stronger.  It's all we have.
   
  Which brings me to my next post I hope I don't get into trouble for it but I wanted to add some stories from this magazine onto my blog.  I see it as the more information we have about SMA/SMARD out there the better.  I hope to add stories here and there from the FSMA Directions.
 
   In the Fall 2010 V17 issue 11 of Directions in the Family Letters section page 92 for those that want to go read the whole story.
There is a letter from a mother, and she wrote about hope that I wanted to quote because I truly believe it expresses what I am going through.
      
Why it's Okay to Have Hope     By: Lisa W. Kay
     On several occasions, I have gotten the impression that someone (often a medical professional) was trying to remind me of the grim prognosis that SMA Type I carries.  I have heard of other, often more frustrating, stories from other parents.  Some individuals seem to be concerned that the parents might have "false hope."
      What I would really like to know is, how can hope ever be false?  Is hope "false" just because that for which we hope is unlikely?  Having hope would be easy if we always hoped for the likely outcome, wouldn't it?  I think I will hope that Ohio State has a winning season in football.  Maybe I will hope that Oprah make lots of money this year.  Then I would have "true" hope, right? 
       Is there a cut-off of some sort-- a point at which hope becomes false?  If the event in question only has a 5% chance of happening, then is hope false?  Maybe a 2% cut-off would be appropriate.  That's ludicrous, isn't it?
      Why is it that some folks feel it is their responsibility to bring us down to earth and give us a reality check?  I can tell you from experience that parents who have children with special needs live with reality smacking them in the face daily.  There is no way to escape the demands that Julia's condition has placed upon me; there is no running away from the latest update telling me that yet another child with SMA has died.  Having hope doesn't mean letting go of reality; it means living with joy, dignity and determination in spite of it.


I mean WOW. I loved it, that's how I feel.  I am sending a big Thank You to that mother for putting it into words for me. Great job.
There are tons of stories in these magazines, and I hope I can spread the word.
Help us find a cure go to Cure SMA

Declan's toys

The care package from Families of SMA
     You may think regular baby toys would work just fine for babies with a neuro-muscular problem but you would be wrong.  A lot of those toys are too heavy for babies with SMA or SMARD or a neuro-muscular disease.  These babies usually become completely hypotonic.  Which means they have less than normal tone or tension in their muscles.  If they are like my son they can't lift a heavy rattle, it's got to be light weight and thin so it can fit into his small palm.  So I wanted to give families a list they can use for their child with this (bleep bleep) disease.
      Thanks to Families of SMA they sent a care package full of fun goodies for our son.  Tons of stuff that will help with Declan's development.  Remember if you are newly diagnosed with SMA you can go to families of SMA and they have tons of info about this disease, and will help with any decision you make. Oh did I mention they also take donations to help find a cure...  Just in case you weren't listening before.  I should mention that FSMA got a lot of their donations for these care packages from families that have or had a child with SMA.  You can read about one such family here.
      SO!  Don't be discouraged of all the daunting tasks that will come your way, just take one day at a time, or in some cases one hour at a time, and remember to breathe.  After all, toys are not going to be your child's favorite thing in the world.. you are!  They will love you and all you have to do is love them too.  But since I haven't figured out to have 10 arms yet I am guessing neither have you.  Yes, back to this list that I never seem to write about.
     (1) These babies love mirrors!  Yes, they love to see things behind them, and love to look at themselves.  Yeah, a little vain but can you blame them they are beautiful! 
     (2) Anything with texture.  Not just soft things either, and since you don't have to worry about the baby putting things right into their mouth you can use things around the house.  Tissue paper or cellophane work great.  Just put it under their hands so they can "rake" their fingers across it. You use texture to stimulate your baby since they can't find these things on their own you need to be the one that shows them.
     (3) Fisher Price projector, you can find some that play music or nature sounds, but it helps children that can't sit up be able to lay down and look on the ceiling.
     (4) Little foil balloons, you can get them at walmart for a couple of bucks.  EZ to fill no helium required, and the straw makes a great handle and is light enough for them to hold on to.  Regular balloons would work also just be careful of it popping in their face.
     (5) Pinwheels,  they shine in the light and spin in the wind, what more could you ask for.
     (6) Fisher Price Swing for infant/toddlers, it reclines enough so your baby doesn't get that pressure on their belly.  You can put it right on your swing set like us or a tall tree or even make something with wood to use it inside. (I am thinking that will be our next project so Declan can use it inside for the winter.)
     (7) Bubbles!! I mean get real what kid doesn't like bubbles.  But go the easy route and get a bubble machine, easier on you. 
     (8) Oball (you can look it up on google)  This little ball is very light weight and has holes all over so my son can grab on to it.  He is already loving this toy FSMA sent to us in the care package. 
     (9) Links.  They are great to link things low enough to tug on.  Can be used to attach various toys to swings, car seats, etc.  Also can be used as teethers, as regular teethers may be too heavy.
    (10) Finger puppets,  lets not forget we need to keep those minds sharp and what better way then to play.  You can use these finger puppets to tell stories or sing songs with your baby.  They will love the interaction.
    (11) Feathers, they are light weight and the babies can grab onto them.  Not to mention it is another texture that I am sure the babies will love.
    (12) Baby print molds.  Ok so this isn't really for your baby but more for you.  For those long lasting keepsakes that you will cherish.
    (13) Cat toys.  Yes you heard me cat toys are small, light weight, and they have bells inside.  They fit right in the palm and some even are crunchy to give them that texture.
    (14) Baby Einstein DVD, Books, & CD collection.  That's right these babies are already Einsteins but why not add to their knowledge with these cute little characters.
    (15)   Beanie Babies.  I say "finally these things come in handy."  You can use them to prop up your babies arms so they can use them and also to prop up any other part of their little bodies.
    (16) Light weight rattles.  Make sure they are skinny enough around too so they are able to clasp on.  Most baby rattles now are too fat around, so one of my helpers from early intervention found this mini maracas at a party store.  You can go to this link to look at them mini maraca.
    (17) Silkie blankets are soft and warm and again adds another texture to their list.
    (18) ABC Painting Sponges.  Super light weight, they are washable, and you can use them with paints, or flour, anything really.  It helps their development to get down and dirty.
    (19)  Sheep Skin Blankets.  Example Bowron Sheepskins (google it) The sheepskin blankets have been found to help with preventing tissue breakdown and to reduce the need for turning children that cannot turn themselves.  These blankets can make it more comfortable for any kind of prolonged positioning. In cold weather, the sheepskin blanket will help keep your child warm and in hot climates, the wool absorbs moisture leaving your child drier and more comfortable.  (My son loves his)
    (20)  Baby plastic spoons may be light enough for your child to bring it to their mouth.
    (21) Little flags, they have a small handle and are light weight and your child can watch it wave in the air.
    (22) Bumbo with tray.  I know recently these were put on a recall, but with SMA/SMARD babies I don't think we need to worry, our babies can't move anyway.  So I don't think they would be falling over.  Just remember to do as it says on that back sticker and not put your child up on a table or counter, cause yes they can fall.
Oh and don't use it in the bath tub, I heard one person did this and I thought it was the dumbest thing in the world to do, the bumbo floats you doof. 
     (23) A Little ball or even a yoga ball.  If your baby is like mine they don't like tummy time.  By having these you can use them with your physical therapy time.  I suggest you have your OT (occupational therapist) show you exercises you can do that will stretch their bodies and hopefully gain strength in their trunks.  Sometimes gravity is your friend and will help you with your exercises.  (picture below)
     (24) Boppy pillows are great for tummy time, and to get them to work on their head control.  Hopefully yours like it more than mine does.
     (25) Baby toys that vibrate.  There are quite a few out there and I am sure any of them will work.  We have some that you pull a string and also ones that are kind of like a ball, but it is a little heavy so you have to push the button but he careful those things are kind of slippery... Let just say Declan is a little weary of that toy now...
     (26) Glow worms.  My son loves his.  They light up and play music, it is a perfect comfort doll for you baby.
     (27) Pedi-wrap braces. If your baby has Contractures like mine then you are probably working on his legs and arms by stretching.  Talk with your PT (physical therapist) about getting these braces for your child.  Hopefully your insurance will cover them.  They have helped my child.
      (28) Water Noodles, you can normally get them at walmart during the summer for under $2.00.  Stock up because you can't get them in the winter.  You can use them for bracing your baby in things like chairs or toys, like the saucers.  You can cut them and mold them around your baby to get that extra pressure off of their stomachs, and give them the support they need.
      (29) Baby swim neck collar.  Yeah they look funny but for babies with this disease they are great to use in the water.  Water therapy provides zero gravity exercises for you baby.  You may have to use weights on their ankles so the legs don't float to the top.  You want to use warm water 90 degrees - 100 degrees.  But for babies that aren't able to move their limbs the water soothes them and helps them work in a zero gravity environment to build up their muscles.  The hard part is finding a pool were it isn't public (germs) and it is warm.  Wish list for our next house is to have a heated pool.  Hot tub could work just watch the temperature.  www.waterwaybabies.com
       (30) Bouncer and Saucers.  The bouncers vibrate and play music, they recline enough for your baby.  Saucers let your child be in the standing position. Even though they can't stand it is still good to put them in those positions.  You will most likely have to use the water noodle so they are stable in it.
       (31) Swing and Playmat.  Swings you probably get, a lot of babies like swings, ones that play music are great.  There are tons of playmat on the market now.  If you can find one with an attachable mirror that would be useful, and don't worry if the toys are too high you can use your "links" to give them more length. 
       (32) Body Pillow.  Of course you can't use the adult size pillows but you can make them if you are handy with a sewing machine.  They are used to help prop up your baby on their sides or under the legs.  Make them small about infant length (24" +/-) and fill with stuffing to make them soft but not to hard. (please note: these pillows are meant for positioning purposes only and not meant to be used as an actual pillow for under your child's head.)
       (33) Radio Flyer Wagon.  Once the babies lose muscle tone and cannot adequately support themselves or lose their swallow and must remain horizontal, the wagons are beneficial for transporting them around the house, yard, doctors' offices, etc.  The babies love to be pulled around in the wagons and seem to me more comfortable to them rather than being picked up and carried.  Particularly after they become more hypotonic.  Attachments can be added to the wagon like favorite toys, tie balloons, or feeding bags.  For comfort, you could use egg-crate foam, memory foam, or the sheepskin blanket.
        (34) Latex nipple tops.  If you find your baby having trouble latching on to the silicone nipple tops or binkies. Try latex tops.  We had gone through so many tops trying to find the perfect one for our son.  It was by chance that I tried latex and he finally drank a whole bottle.  The silicone became too slippery and was hard for him to latch onto.  Latex has texture that is easier for them to latch onto.  He started doing better with his feedings.  His favorite is the Enfamil standard flow nipples.  Hopefully your baby isn't as picky as mine, it took a lot of trial and errors to find the right one.
        (35) Wind Chimes can be hung outside on a swing to be played by the wind.  Your child could also use other toys such as the balloon on a stick to make the wind chimes move and play music. 
        (36) Put stickers on your nose and have your baby pull them off.
        (37) Car beds make traveling more safe and comfortable.  Car beds are very important for transporting Type 1 infants.  The FSMA Equipment pool may have some available so please contact Colleen at equipment@fsma.org for more information.
        (38) PVC play gym.  Since most SMA type 1 babies need to lie on their backs, it can sometimes be hard to adapt toys to suit your child's needs.  One way to help entertain your child while they lie on their back is to build a PVC Play Gym which will allow you to hang toys and objects directly above your child and will help them play independently.  This PVC play gym can be completed in well under 2 hours and costs less than $30 using basic items you can find at your local hardware store.  I will add the "how to" in a later post.
        (39) MUSIC!  You can go to www.playlist.com and make a playlist for free.  Of course you can make one just for you with your favorite music, but I suggest making one for your baby too. With calm, soft, inspiring music. I made one for us called Baby Calm you can go HERE to listen to it. 

I am sure I can go on and on about these things.  Believe it or not I received most of these items through Familes of SMA so again if you are newly diagnosed with SMA/ SMARD you can go to families of SMA   you can receive an information packet and a care package. DO IT!
If you have anymore suggestions or know things that you have found to be useful go ahead and comment, and good luck to you all.  May we find a cure soon!
therapy time using the ball and a mirror.

Friday, August 24, 2012

A story by K about D

D & K

August 24, 2012

   K wrote a story about her big brother D in school and she wanted me to post it on our blog.  Enjoy.

How My Big Brother Is A Geek
By: K

My big brother is a geek because I tell you what he doesn't get off of his computer unless my mom says to.  He stays on it no matter what.  He'll not even get off when his friend is here.  So sometimes when I go down there he says "K" get me something to eat, but I'm like no way jose, so I say why not do it yourself.  My brother says cause I'm to lazzzy to get off of my computer and I'm in the middle of a battle on Skyrim.  I say you can't get food unless you get up and get it yourself because I'm not your maid here.  So he says ah just forget about it, and he goes on and on about his computer. yeah yeah.  I told you he never gets off his computer.  He finally gets off when he eats dinner but leaves the game on, and when he is done eating he just gets on his computer again!  But I turned off his computer and  he said "K"!! did you turn off my computer!!! I said what are you talking about but I was also smiling.  Then when he turned it back on my mom called time for bed.   But I wasn't going to bed until he did.  He just turned on the radio and sat in his chair and got back on his computer and played and played... and played.  He is the person who is weird because even if his best friend is here he just plays on his computer, and then finally he goes to bed.  The next day my mom called down to us time to get ready for school.  I woke up but "D" woke up before me and he was already done getting ready but he wasn't done all the way because he didn't brush his teeth and nobody was awake when he got up so he tried to get away with play on his computer.  But there was no way he was getting away with it, and after I was done getting ready it was 8:20 and that was the time to go and "D" was upset cause it was time to go and he wanted to play.  But he couldn't skip school, so when we got to the bus stop he got a little ornery because when he is off of his computer he is unhappy.  So he was kind of mean to his friends, even me.  Well he wasn't that mean to me he just ignored me but he was really mean to his friends.  But I managed to calm him down.  But not all the way.  After school he got back on his computer but I said you need to do your homework, and he said you need to do your homework too.  But I didn't have homework.  So "D" did his homework but skipped his spelling and I didn't let him so I helped him with his spelling but he sat down and did nothing but I told him the faster he studies the faster he can play on his computer.  So then he did it, and after a friend came over and wanted to play.  I said sure let me ask my mom, so I asked my mom, and she said yes.  So I went to "D" and asked if he wanted to play too.  He said yes and I said all right meet you at his house ok?  We went out side which I don't get because he wasn't ornery but when he asked to play on the Xbox he got a little ornery because our friend was grounded from it.  Then the next day he got to play, and he was happy.
The End

Who knows this could be the early work of the next Sherrilyn Kenyon (My favorite author), or Stephanie Meyers. ;p

The Perfect Marriage

August 24, 2012

      In this post I thought I would write about something that is really important to me,  my marriage. For the best marriage ever you should follow this simple rule:

   1: Don't listen to me I have no idea how to make the best marriage ever.

    Our marriage is not clean, or peaceful; we fight, and curse.  We also love, and respect each other.  Has it been easy? uh, HELL no...  We celebrated our 11th anniversary this year, and it took ten of those years to get my hubby to finally put his clothes into the hamper.  We never imagined we would make it this far, and we know a few family members didn't think we would either.  Yeah, you know who you are, thanks for betting at our wedding.  By the way I think hubby and I won that bet so feel free to deposit our money into the bank.  ;p
     I would say our first few years were the hardest, the first year especially; we about gave up so many times.  But I am glad to say we stuck with it.  Marriage isn't just about loving that person, it tests so many things.  Patience, which I will mention I still don't have; friendship, lets face it your spouse becomes your best friend; and strength, and yeah you guessed it we tested that one too.
    It sounds like our life is hard and without humor with all these struggles, but we laugh...  I think that is what has kept us together for the most part, our sense of humor.  We make each other laugh and with things going on in todays life we all need a good laugh.  Even when we are fighting we have made each other laugh. 
      Let me tell you a story about one of our many fights:
    We were fighting, yelling, screaming, really mean rotten stuff.  I got so mad I picked up a glass and since I didn't want to clean up the mess on the floor I threw it into the sink.  Well the sink apparently didn't want that glass and so it bounced out of the sink flew through the air and landed between my hubby and I, where, of course, it shattered.  Obviously, hubby and I were just stunned; I mean, how does that happen?!  But hey it stopped the fight, we even chuckled ... a little.. but now we can really laugh about that, and you know what... we can't even remember what we were fighting about. 
    So as I have said we don't have the perfect marriage, I don't know anyone who has had a perfect marriage either.  The only advice I can give someone is to go through things together.  Share your hopes, dreams, and fears with your loved ones.  Isn't that what love is?  Absolute trust and blind faith in that one person?  If you can't trust your spouse, who can you trust? 
     Life is short, most fights aren't worth the argument.  I can honestly say I love my husband, he has helped me become who I am today.  An independent, strong, handyman of a woman.  May your spouse help you as well as mine. 
   In ending I will share a fear with you:   I fear our love will be tested the hardest in the near future.  We both hope we can make it through, and come out stronger on the other side.  Hug your loved ones, for tomorrow they might be gone.


Monday, August 13, 2012

New Technology

August 13, 2012

     Everyday I am sure parents of SMA or SMARD are looking for new things that could help their child.  I am such a parent.  I think science has come a long way and we are getting closer to helping our babies.  I just hope we find something in my baby's lifetime.  I am going to post some video's about news stories.  One is about a little girl with SMA, the other is about a girl with "magic arm's."  Seeing these out there gives me hope and I love having hope.



Here is the other video, now keep in mind it is for another genetic disease but watching my son and I can see how these would really help him.



If you of new things out there go ahead and post.  Thanks for reading.


Saturday, August 11, 2012

Candle lighting for SMA awareness

Fink family candle lighting

Declan's candle lighting for SMA
August 11, 2012
       The Fink family participated in the 2012 candle lighting for SMA awareness event.  Even though we still aren't sure what Declan has, we are pretty sure it is in the SMA family.  So we lit these candles to honor those who have lost the fight and for those who are still fighting.      
       Everyday someone new learns about this horrible disease and everyday we come closer to finding a cure.
     Give your loved ones a hug tonight and hope they never have to worry about things like this.  If you would like to give to this cause you can go to this website HERE
That website also has a lot of information about SMA. 
      I think I will have a post about the daily routine of Declan, and the things we use for toys.  So keep an eye out. 

Caution: these scenes may cause you to laugh or cry.

Big D and little D

As Joker would say: "Why so serious?" 
   Since my blog seems to be a vortex for happiness.  I wanted to write about something I am sure everyone has gone through if you have a boy reaching the teenage years.

A Story about Big D:
     I have found a perfect tool to make a person talk in any interrogation.  Nuclear weapons don't have anything on these suckers, I am sure they would kill cockroaches... You ready ... Big D's feet!  Yes Sir these puppies can clear a room.  I know it's like a rite of passage for boys to become gross and stinky, but man, do I have to smell them too?!
   
   At this rate my hopes of seeing my boy married or even having a girlfriend in the future is dwindling.  Cause on top of his stinky feet, he is a big NERD! (Sorry correct term is geek, but to me they are still nerds...) Big D loves to play on his computer, especially Minecraft.  We even bought him a tee-shirt with the "Creeper" on it.  Don't worry if you don't know what a Creeper is, that means your normal.  
    Don't get me wrong I love D, he as helped a lot around the house and with Declan.  He loves to read, and is super smart.  Last year in school he got 100% attendance.  He just isn't going to be an athlete and I guess I am ok with that.  The apple doesn't fall far from the tree since his dad is a big geek too.  I just wish he smelled more like mom...

Sincerely, 
     gasping for air, Mother


Thursday, August 9, 2012

SMA



     Now I should mention that everything I have looked up about the kids of SMA and SMARD start showing signs after a few month, but that is not the case with Declan he has had these signs since birth.  I would love to hear other stories of families with SMA or SMARD.  We wish everyone well.

     The month of August is SMA awareness month!!
I have gathered some information about this illness.  Since the doctor's are still trying to figure out what Declan has we have done research in both SMA and SMARD.  The more people know, the more chance for donations, and the faster we can find a cure.  Knowledge is power.
You can go to http://www.fsma.org for support and information or you can find them on face under Families of SMA.

If you know someone who has been recently diagnosed with SMA,  please e-mail infopack@fsma.org to request a free informational packet.

     What is SMA?
The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.

What Causes SMA?

In order for a child to be affected by SMA, both parents must be carriers of the abnormal gene and both must pass this gene on to their child. Although both parents are carriers the likelihood of a child inheriting the disorder is 25%, or 1 in 4.
An individual with SMA has a missing or mutated gene (SMN1, or survival motor neuron 1) that produces a protein in the body called Survival Motor Neuron (SMN) protein. This protein deficiency has its most severe affect on motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibers to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, without this protein nerve cells may atrophy, shrink and eventually die, resulting in muscle weakness.
As a child with SMA grows their bodies are doubly stressed, first by the decrease in motor neurons and then by the increased demands on the nerve and muscle cells as their bodies grow larger. The resulting muscle atrophy can cause weakness and bone and spinal deformities that may lead to further loss of function, as well as additional compromise of the respiratory (breathing) system.
There are four types of SMA, SMA Type I, II, III, IV. The determination of the type of SMA is based upon the physical milestones achieved. It is important to note that the course of the disease may be different for each child.
Spinal Muscular Atrophy Type I

Type I SMA is also called Werdnig-Hoffmann Disease. The diagnosis of children with this type is usually made before 6 months of age and in the majority of cases the diagnosis is made before 3 months of age. Some mothers even note decreased movement in of the final months of their pregnancy.
Usually a child with Type I is never able to lift his/her head or accomplish the normal motor skills expected early on in infancy. They generally have poor head control, and may not kick their legs as vigorously as they should, or bear weight on their legs. They do not achieve the ability to sit up unsupported. Swallowing and feeding may be difficult and are usually affected at some point, and the child may show some difficulties managing their own secretions. The tongue may show atrophy, and rippling movements or fine tremors, also called fasciculations. There is weakness of the intercostal muscles (the muscles between the ribs) that help expand the chest, and the chest is often smaller than usual. The strongest breathing muscle in an SMA patient is the diaphragm. As a result, the patient appears to breath with their stomach muscles. The chest may appear concave (sunken in) due to the diaphragmatic (tummy) breathing. Also due to this type of breathing, the lungs may not fully develop, the cough is very weak, and it may be difficult to take deep enough breaths while sleeping to maintain normal oxygen and carbon dioxide levels.
Spinal Muscular AtrophyType II

The Diagnosis of Type II SMA is almost always made before 2 years of age, with the majority of cases diagnosed by 15 months. Children with this type may sit unsupported when placed in a seated position, although they are often unable to come to a sitting position without assistance. At some point they may be able to stand. This is accomplished with the aid of assistance or bracing and/or a parapodium/standing frame. Swallowing problems are not usually characteristic of Type II, but vary from child to child. Some patients may have difficulty eating enough food by mouth to maintain their weight and grow, and a feeding tube may become necessary. Children with Type II SMA frequently have tongue fasciculations and manifest a fine tremor in the outstretched fingers. Children with Type II also have weak intercostals muscles and are diaphragmatic breathers. They have difficulty coughing and may have difficulty taking deep enough breaths while they sleep to maintain normal oxygen levels and carbon dioxide levels. Scoliosis is almost uniformly present as these children grow, resulting in need for spinal surgery or bracing at some point in their clinical course. Decreased bone density can result in an increased susceptibility to fractures.
Spinal  Muscular Atrophy Type III

The diagnosis of Type III, often referred to as Kugelberg-Welander or Juvenile Spinal Muscular Atrophy, is much more variable in age of onset, and children can present from around a year of age or even as late as adolescence, although diagnosis prior to age 3 years is typical. The patient with Type III can stand alone and walk, but may show difficulty with walking at some point in their clinical course. Early motor milestones are often normal. However, once they begin walking, they may fall more frequently, have difficulty in getting up from sitting on the floor or a bent over position, and may be unable to run. With Type III, a fine tremor can be seen in the outstretched fingers but tongue fasciculations are seldom seen. Feeding or swallowing difficulties in childhood are very uncommon. Type III individuals can sometimes lose the ability to walk later in childhood, adolescence, or even adulthood, often in association with growth spurts or illness.
Spinal Muscular Atrophy Type IV (Adult Onset)

In the adult form, symptoms typically begin after age 35. It is rare for Spinal Muscular Atrophy to begin between the ages of 18 and 30. Adult onset SMA is much less common than the other forms. It is defined as onset of weakness after 18 years of age, and most cases reported as type IV have occurred after age 35. It is typically characterized by insidious onset and very slow progression. The bulbar muscles, those muscles used for swallowing and respiratory function, are rarely affected in Type IV.
Patients with SMA typically lose function over time. Loss of function can occur rapidly in the context of a growth spurt or illness, or much more gradually. The explanation for this loss is unclear based on recent research. It has been observed that patients with SMA may often be very stable in terms of their functional abilities for prolonged periods of time, often years, although the almost universal tendency is for continued loss of function as they age.
For information on Kennedy's Disease, please see www.KennedysDisease.org.

Some facts about SMA:
      Did you know one in every 6,000 babies is born with Spinal Muscular Atrophy?
      Did you know that Spinal Muscular Atrophy (SMA) is the #1 genetic killer of children under the age of two?
      SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity or gender.

Here is a video about SMA awareness:


SMARD


This is the information I have on SMARD from other families that have had a SMARD child, I hope it helps.

Spinal Muscular Atrophy with Respiratory Distress (SMARD) is part of the Spinal Muscular Atrophy family of disease. It is a motor neuron disease, meaning there is progressive destruction of cells that control motor function, such as breathing and speaking. Cognitive function is unaffected. Like all motor neuron disease, there is no cure. 

SMARD is a life-threatening motor neuron disorder.  Symptoms of SMARD are commonly seen within the first six months of life. Because SMARD undermines voluntary muscle function, infants who inherited a defective gene from both parents may be unable to lift their heads or may have other mobility limitations. Their inability to breathe or cough makes them susceptible to pneumonia and other respiratory infections. Children with the disorder stop breathing due to a paralyzed diaphragm and often die in their sleep. As a result, many children with SMARD never see their first birthdays.

SMARD is an autosomal recessive disease, meaning both parents carry the mutations that cause SMARD. Testing is done through blood work and was, until very recently, unavailable in the United States.
It usually takes up to 3 months to get any testing results back- Declan is different because so far they can only find ONE mutated gene and for SMARD you usually have two.
How is it different from SMA? SMARD is caused by mutations on the IGHMBP2 gene, whereas 'regular' SMA is caused by mutations of the SMN gene. SMARD typically attacks breathing musculature first, and moves to other muscles. Every living child with SMARD is trached and ventilated--without the diaphragm these children cannot breathe.

SMARD is little understood and even less known. Since IGHMBP2 is such a 'newly' discovered gene, there is not a lot by way of information about SMARD (and what is available is scary or requires an MD to understand). As far as we are aware, there are only maybe 60 diagnosed cases in the world. (<---may have gone up)

With SMA- roughly 1 in every 10,000 children are born with this disease.
With SMARD- roughly 1 in every 1,000,000 (if that) are born with this disease.

1 in 40 people are carriers of the SMA gene.
1 in 50,000 are carriers of the SMARD gene.

For future children we have a 1 in 4 chance they will have SMARD.
There is no way to stop it. There is no way to help it. There is nothing that can be done.
These children are dieing. They will not live a long life.
Thankfully an amazing man has taken it upon himself to be the first person to ever start research on this horrible disease. I took this from the Jackson Laboratory website to explain were we are with research.

Research
Professor Greg Cox, Ph.D., and his research team within The Jackson Laboratory in Bar Harbor, Maine, is one of the few genetic scientists committed to better understanding SMARD—spinal muscular atrophy with respiratory distress. This rare motor neuron degenerative disorder is a devastating scourge for the children and families who are coping with it.
As genetic diseases go, SMARD is the rarest of the rare,” Dr. Cox says.  “It’s a very early onset and very rapidly progressing motor neuron disease. One of the nerves affected is the phrenic nerve, which impacts the diaphragm. When the diaphragm is paralyzed, you lose the ability to breathe and, survival requires a ventilator.”
Jackson Laboratory research utilizes a laboratory mouse model of SMARD, which emerged as a spontaneous mutation within the massive vivarium maintained in Bar Harbor to study an extensive array of human diseases. It’s the only mouse model of the rare disease, and it’s a key tool used by the few researchers worldwide who are exploring potential therapies that would modify or neutralize the defective gene that underlies SMARD.
This mouse very closely models the progressive loss of motor neurons seen in the human disease,” Dr. Cox says. “There is one area where the mice seem to differ; the phrenic nerve is less severely affected. While the mouse model doesn’t exactly match the pattern we see in human patients, it’s the best tool we now have.”
Dr. Cox is eager to advance his SMARD research by studying motor neurons from mouse stem cells to determine if the disorder can be reproduced in a system that can be directly observed. He also wants to expand this work to use cells derived from human skin tissue, which would allow human forms of SMARD to be cultivated in a laboratory setting, offering the opportunity to test the efficacy of various genetic modification strategies. That work will require additional funding.

To make a donation for SMARD research please go HERE. Every dollar helps. No other parent should have to know they will see the end of their child's life.

Wednesday, August 8, 2012

Declan's Story

D&K w/ Declan: photo by Linnea Farnsworth
August 8, 2012
I will start at the beginning, you may want to get comfortable as it's a long one:

When I was pregnant I knew something wasn't right, he never kicked while in the womb, I kept bringing it up to the doc but he said he was moving in the stress tests, so he didn't put much thought into it. It still stressed out mommy though. Our son Declan (deck-lin) was born at 7lbs 4 oz and 4:07pm.  The cord was around his neck and he was a little purple but they got him going and he seemed to be fine, other than being a little quiet. Later that night, the pediatrician came in and told us there is something wrong because Declan didn't respond to any of the natural reflexes that other babies are born with. Our pediatrician didn't know what to do and that he will be researching and should have more answers at his 2 week check-up.  Safe to say those 2 weeks were stressful and happy.  Stressful because of the unknown and happy because our baby was finally here and he is so dang cute!

At the 2-week check-up, our doc sent us to the children's hospital to get an ultrasound of Declan's brain to check for a stroke which came back normal, so our doc did more research and sent us to a neuro doctor back at the local children's hospital.  We took him for a consult with one doctor up there, and he brought in another doctor, who ended up doing an EMG (Electromyography is a technique for evaluating and recording the electrical activity produced by skeletal muscles.) on Declan.  His oxygen levels were low, and with him gasping they thought it best to admit him and run some tests. Those next 3 days we were getting every test in the book done.  I felt so bad for my boy, I wouldn't have been surprised if he started to glow cause of all the tests that were done on him. 

Here is what we found out:
1 he has really bad reflux, but the test showed he wasn't aspirating into his lungs, which was good.
2 he has a partial paralyzed diaphragm on the right side. Which was causing him to breath pretty hard. He would wake up gasping and coughing throughout the nights, it was very scary.
3 He had contractors in most if not all of his limbs. It means the tendons are too short and the person can't extend their limbs.  With a lot, and I mean a lot, of physical therapy his arms are now loose and his hands are much better. He was always tight fisted since he couldn't relax the hands. We are still working on the legs. we have not been able to get those straight yet.  He has small movement in his forearms and we exercise all the time. 
Update: His legs are almost straight! Declan and I attended an infant massage class and he loves it. So here is what we do: 2 separate pt's (physical therapist) an ot (occupational therapist) and we work with them at least once a week. Then every morning we work on infant massage, and throughout the day we have physical therapy time. On top of feeding him every 2 hours. Also a lot of play time too.
Well SMA (spinal muscular atrophy) was brought up a lot during the hospital and they ran the test, it was a horrible time to wait, so when we got the result and they said it was Negative I was over the moon with joy, but still worried cause we still didn't know what was wrong with our boy.  Next on the list SMARD (spinal muscular atrophy with respiratory distress), and after a long wait which seemed like forever, the doc called us in, the test came back indeterminate..., and I was like “what the hell does that mean?”  This is how SMARD breaks down. With SMARD you have two mutated genes, well with Declan they could only find one.  The doc's are confused cause I guess you can still have only one mutated gene and be perfectly fine, and you would never know you were a carrier.  But for Declan he has all the signs, and they are rather stumped.  They want to run more test to either find the other mutated gene somewhere in his DNA code, and also to test my husband and I to see if we are carriers. We are still waiting for those results I will post later about them. I will also post the definitions of SMA and SMARD so hopefully they will help other families.

We were sent to a sleep doc, and had a sleep study done.  Declan showed signs of sleep apnea, so we were given oxygen and an oxi meter to put on him every night.

As of today Declan is coming up on his 6th month, he is a joy to our lives, and K will not stop touching him cause he is just so damn cute (my words not hers). We just started having fewer trips to the doc's, from every week to once a month... (yeah imagine those doctor's bills lol)

Since birth Declan has had problems with feedings, I wasn't able to nurse because he couldn't latch, and he was still having trouble with bottles. After what seemed like a lifetime I found he did better with latex instead of silicone and we found one bottle top he does great with, the enfamil standard flow, but ONLY this one (I ordered more online).  We are on the bottom of the growth chart but we are following it.  He eats every 2 hours day and night we just started getting him to go about every 3 hours at night, which we let him as long as he meets his feeding goal during the day. He hasn't had any gasping at night since that first month, after we put him on oxygen. We are always moving him all day long.  It is hard to wrap your head around. cause mentally he is there. You can see him working so hard to do things but he just can't.  He still gives us wonderful smiles, and loves to talk (coo) to us. 

The doc's don't want to give us false hope, they are waiting for the other shoe to drop and every day Declan is good it stumps them even more.  Since he is so different they can't tell us what to expect, and we just have to watch him very closely. Everyday Declan remains healthy is great for him. They said if we can keep him from getting sick for his first year it would go a long way to helping him. So we don't take him out much, and we limit who holds him and NO ONE that is sick can come to the house, or close to him. Fun times! All we want to do is share our baby but I rather have him healthy.

Our last doctor's appointment was a bad day for the Fink family. They performed another EMG and it showed a decrease in the signals from his nerves to his muscles. We have one doctor still thinking it is SMARD and another thinking it is another form of SMA. I am letting them fight it out. To me both are bad, but it isn't going to change our daily lives just yet. The doctor said we will start to see a decrease in his activity, even more than he already does. He already can't roll, or sit up; he barely moves his legs, and he moves his arm slowly but can't grasp anything. He can't reach for me, or give me hugs without help. He hates tummy time, probably because it puts too much pressure on his chest and tummy and becomes difficult for him to breath.

But!! He smiles, and laughs, and looks at you with such wisdom behind those eyes. You can see and feel the love he pours out. He tries so hard and I love him for it. I'm sure to everyone it seems like a hard life to do so much work for such a small baby, but Declan doesn't know any different. We have been doing all this work of therapy since birth. Now it may become too much work for me, but today, right now, I will work and work hard to help my son. I am always doing research and trying something new. Like now, I just finished the class about infant massage and I am looking into reflexlogy and a therapy called the Emotion Code. We enjoy everyday we get to spend with him and love him to our fullest. The doctor's said he will probably end up with a g-tube (gastric feeding tube), and a trachea (tube inserted into the neck for breathing), and that my husband and I needed to think about what we wanted to do “when” it comes time for that. Yeah a crushing day for the Fink Family. I almost want to stop going to the doctor's cause every time I leave there I feel down and depressed. I will be happy if they give us false hope I am okay with that, let me be in denial. 
 
So here we are continuing to be strong and working hard everyday. Enjoying our precious boy and still trying to dream the big dreams. Wish us luck!

BTW: Declan means rare and precious. It fits our baby boy well.

The Thinking Fink's

Our Fink Family: Photo by Linnea Farnsworth


August 8, 2012
If you would have told me(Momma Fink) that I would be writing a blog and have a baby with a genetic disease in 2012 I would have smacked you beside the head and called you crazy.  But here we are...
      Now I know you really want to hear everything about me, because I am super important in this world and I change everyone's life that I meet (cough), but I will probably be posting more about our newest addition.  Our baby boy Declan; (Deck-lin) for those that don't know how to pronounce this Irish name.  My main reason to start a blog is to get information out there about genetic diseases.  The more people know, the more likely chance to finding a cure.  I have actually found more information about Declan's possible disease from families blogs then from medical websites.  So Thank You to the families that posted.
       Finding out that our precious baby has a neuromuscular disease is as fun as being trapped in a burning building and not being able to get out.  Our dreams and wishes for him to grow up, get married, become successful have changed to sit up on his own, have use of his hands and arms, be able to talk, and most important to Live.  I think my next post will be the story of Declan.  There is way too much to say about our wonderful babe. 
      I have decided to not use first names on our older kids since this will be a public blog.  We will refer to them as D and K, but since most of this will be about Declan I will use his name, but may refer to him as little D sometimes, and I will probably use daddy and mommy instead of our names too (Yes, I know my name is already on the blog).  We are paranoid and crazy beyond reason deal with it.  So those that know us if you comment use this as a guideline.  <----(I have no idea if this will actually work but I will try.)
     One more month and school with start up again for D and K.  Can you say about time!  I can't get D off of his computer and K I am pretty sure is bored most of the time.  School will help, and give me some peace for a few hours during the day.  I don't know why those two can't be in the same room with each other but it turns into a call of duty war zone in this house.  War zone + sleeping baby = mom turning into the ice lady from Narnia.  But I guess I can't say much I didn't get along with my siblings while growing up either, lets face it who does. 
     Well I guess this is a good start I really have no idea.  I will post all the info I have gathered about Declan and maybe it will help another family out there.
Wish us luck, and love.