August SMA Awareness Month

SMA Awareness 

One warm Saturday at dusk everyone supporting SMA lit a candle for those who lost the fight with SMA and for those who are still fighting.  It just happened to be the same day my sister got married!  She was gracious enough to be in our picture this year for the candle lighting.  

For those of you that have been living under a rock and not following my blog SMA means Spinal Muscular Atrophy, which is a motor neuron disease. 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.  

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.

Sadly, there is no treatment, and there is no cure. However, SMA was selected by NIH (National Institutes of Health) as the disease closest to treatment out of more than 600 neurological disorders. I'd encourage you all to donate to help find a treatment to SMA if you are able. 

SMARD

SMA with Respiratory Distress

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.

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.

If you want to read more about SMA or SMARD you can click on the tabs at the top on this blog and they will share more info.

It has been 18 months and we still are not formally diagnosed.  Everything has come back negative.  SMA, SMA x-linked, SMARD he only has one mutation and your suppose to have two.  We have done deletion tests and we can't find anything wrong with the other gene.  Our DNA is rather long and I guess Declan's DNA just likes to hide things so it as been difficult.  So here we are dealing with a day by day basis.  Not fully knowing, but fighting through anyways.  Today we have him, today he is smiling and laughing.  

We recently received a demo wheelchair for Declan to learn on.  It's been less than a week and we got him to go straight.  Now we just have to work on other directions.  We are super excited to start this new adventure with Declan and we love to see his face light up.

Above he has only had the wheelchair for about 4 days, and was getting mad at us for turning him around and touching "his" chair. 

I also wanted to tell you that believe it or not this cute little boy still gets into trouble.  Just because he can't walk or do most things physically doesn't mean he gets off the hook.    He is coming up on his terrible two's and him being different doesn't stop what naturally comes with growing up.  I wanted to tell you the first time I yelled at him.  As most of you know I am always carrying Declan up on my shoulder.  It just so happens that Dec has a thing for biting whatever he can get into his mouth.  This day it was my neck he bit, now mind you it wasn't a little nibble it was a full blown snap the jaws of life bite.  In another words it hurt like the dickens.  So I set Declan away from me (who was smiling at the time) and yelled at him to stop biting me and that it hurt.  You would have thought I just ended this kids world.  He gave me the saddest look with the puffed out lip put his head down and started to cry.  It was so cute I couldn't stop laughing, but each time he looked at me I gave him a stern look and he would again put his head down and continue to cry.    

It's not that I want to yell at my child, but even he has to learn right and wrong.  Just because he does things differently doesn't mean he still doesn't push mom's buttons.  Yes even the handicapped get put in time out.    

I do have to say this kid is incredible, he goes through so much.  He works extremely hard at everything he does.  Declan is truly a blessing to us.  He has shown us so much, has changed us forever.  I can't imagine life any other way.  I've finally found something I'm good at.  I will take the exhaustion, the constant worrying, the unknown future for each smile and laugh I get from this baby boy each day.    We don't know how long we get to keep Declan in our lives, but it's hard to not look to the future and live life one day at a time.  In the meantime we take lots of pictures (to much annoyance of my facebook friends), and videos.  We hold him tight and give him lots of hugs and kisses.  I would recommend the hugs and kisses to any of your children it is good for the soul, for yours and your child's   Most importantly tell them you love them every day and night.  If we have learned one thing from this experience it is life is hard and sometimes short so don't regret not saying something that should come easily out of a parents mouth.    

Continue to check back from time to time for our updates!

We Sold!

   Well we had our house on the market for 9 days before we got an offer.  We used these guys:  discoverealty. Our agent was Travis.  They worked with us and has a free staging consultant come to your home to help you get it ready to show.  They took awesome pictures too.  They always kept me in the loop, and answered all my questions.  Thanks Travis and your team!
   We closed beginning of June, and I am really happy we did.  Don't get me wrong I miss my friends in the neighborhood, it was so much easier to barrow a cup a sugar when they were right next door, now... I have to go to the store!  You know that feeling you get when you have been away from home for a long time and you get this excitement in your belly.  When I go back to the neighborhood past "the old" house I don't get that.  I think by the end of it we were really really happy to leave.  I am sure it will be great for the new owners, since we fixed everything while we lived in it.  We had to repair so much in that house that by the end I think we really hated living there.   One chapter of our life is done, ready to open tons a news ones.

Mommy and Declan

Last days of cleaning just missing one thing...

Sunrise from the old house

These are the birds that lived in our hitch of the trailer,
 luckily for us they left before we had to.

While we are building we are renting.  In order to stay on the main floor for Declan (We started the process to get a wheelchair, I will post about that later)  we had to get a... 2 bedroom apartment..... to say it is a tight fit is an understatement.  Ok going from a 5 bedroom home to a 2 bedroom apartment is hard so this is what you gotta to do:
1) Declutter:  Those treadmills that are sitting in your garage... they are not there for decoration and since you probably don't know how to use them I suggest selling them.
2) Get A Storage Unit:  A 5X10 doesn't fit anything you need to find one of the biggest units where it will be easy to get in and out of.  Also stack boxes! Go up to the ceiling  or until your boxes start to look like the leaning tower of pisa.
3) Use every nook and cranny in your apartment:  Oh that's the master bedroom walk in closet you say?... Oh nope it now holds your babies changing table, and every miscellaneous box that you think you needed in your little place.  Oh they gave you a stackable washer and dryer?   Well look at that when you move that over it gives you a perfect place to put your freezer... what you can't shut the laundry door? Oh well deal with it!
4) Find places to go:  You may think to yourself "naw I can stay inside the apartment with 5 people, and tons of baby toys everywhere"  Yeah well you would be wrong.  See first you don't notice it but you start to go a little crazy, you get this far away look in your eye, and you start to contemplate the murdering of your older children... and you start to think "It might be worth going to jail".... SO to avoid this from happening find somewhere to go.  Go to the clubhouse and play at the pool or park or in our case splash pad.  Go for walks, even sitting on the porch out of the cramped space will help.  Read a good book, if your like me then you would be diving into my favorite author's books (That would be Sherrilyn Kenyon for you that don't know, there is nothing like a great romance!)  But I advise you not to kill your children, they might be the president some day. (the president of the nerds is probably more likely, but I didn't want to crush their dreams)
5) Alcohol:  enough said, AND or for those of you that don't drink the hard stuff a big glass of Dr. Pepper does wonders, it's what the doctor's ordered "wink wink"  (Since I am trying to look beautiful for my sister's wedding come August the only drinks I have been drinking is water :(  My hubby says I am pretty mean without my caffeine, and I have to agree with him...  I will have you again Dr. Pepper I promise!

Well those are the best suggestions I can give you.  Yes it will be a tight fit, yes you will get on each others nerves, yes you will be too broke or poor to go out all the time.  BUT think of what is to come.  Our future is  coming and we can't wait for it to start!

I want to say a very special Thank You to our friends (who know who you are H&N) for watching our babies (Mickey & Cooper) while we deal with these small dwellings.  We miss them, but we know your taking care of them.

Also to everyone who helped us move!  T that flatbed helped a lot!  Thank You Thank You!

Picture of the apartment below, yes I know it's messy, and no I don't care...
D&K are a sharing room, and Mom and Dad are also sharing one with Declan... fun times.
I do have to say the master bath here is bigger than the one we had... but everything else feels like it shrunk...

 



 



 

Sun bathing

Places we have gone:

 

 

The End

No more Quarantine!

Oh Sunshine!  I missed you!  We have been able to go outside, and to stores.  Ok so we haven't gone out too much.  Enough to get our house up for sale! We also picked a builder and hope to start construction in July.  So lucky us we will be renting for a bit, a little concerned about what we are going to do with the dogs for a few months, but we will figure it out.

We picked a rambler that hopefully work great for our family needs, and in an area that I like.  I will post pictures when the time comes, but it will be awhile.  What's that saying.. The longer the wait the bigger the reward?

Declan has been a trooper.  Since I have been dealing with showings of the house, I have been cleaning a lot and then I pack our babe up and leave the house for hours.  Messed up his nap times a little and I haven't been able to have a lot one on one time with him all day long like we normally do, but I think he is doing great.  I include him in my chores like making the bed I fold him up into the bed and he laughs and smiles back.  Laundry has gotten a little trickier he has gotten a little heavier and bigger I can't fit him to well in the basket with loads of clothes, but he likes to be with me.  Of course I haven't been able to keep up with our baby boy and the house so we have been working on independent play this month.  If we set him up in his highchair and prop up his elbows he can play on his tray with his toys.  He is able to exchange things between his hands too, still working on getting things to his mouth.

loved to sit in the cart, kept looking all around.

This May we are seeing the neuro doctors and hope to set something up with the spine specialist soon.  Poor boys back is getting worse, but he still loves to sit up.



D&K
    Big D is in an after school program called Mindstorm they build lego robots and program them to move.  He seems to like it and even though it makes him into a bigger nerd that's ok cause he is a big smarty pants!

    We got D&K in swimming lesson and they like it a lot, they never want to leave when the lesson is over.  I see a summer full of swimming pools and lots of sun.  It's a good thing we only have a month and a half left of school.

This next month is going to be full of packing and moving, oh joy...  May the weather be good, and mine and your families stays healthy.  We wish you well!

crazy hair!!

Declan's 1st Birthday!!

Declan is ONE!!

Can you believe it?  We made it, one year.  You can ask anyone I was so excited for this day to come.  I was gearing up for it weeks before.  I wanted to have a big party but since we are still waiting for spring to come, I kept it small.

We had a potluck and I had four different kinds of really good soup.  Thanks for our families for making those.  They were really good.

Present time was about what you expected he liked the bows and tissue paper more than the presents.

But we sure appreciate everyone who came and he is loving all his gifts.  Thanks!

But what we can't forget the cake time!

 Declan is ready!

We all sang to him and he was smiling back at all of us, so I know he liked that part.

Declan didn't know what to do with the cake, he was just kind of poking at it so I helped him out.

But he got the hang of it, and was slopping it up in no time.

Happy 1st Birthday Declan!!!

After all said and done, it was too much for the babe and he finally crashed.

I added a few more picture below.

The Journey so Far

We had a Christmas party to go to and since there were going to be a lot of people there we decided not to take Declan but we wanted everyone to see how far he has come, so hubby and I made a video.  It was my first, and there are some glitches in it but I hope I can get hubby to fix those for me soon.   I think it turned out rather well.

Thanks all for checking in on our little family.

if the video doesn't work go here:

Declan Video

The Holidays

Dad and Dec, of course dad is hiding.

     You know when time seems to speed by when it comes close to the holidays, well our house is no different.  Trying to get the house ready to sell, taking care of a special needs baby, two school age kids, the hubby, and add the holidays, yeah don't judge you wouldn't have any time either. ;p

 


                                        Halloween

Well you could say our Halloween was a little eventful but we got through it, and the kids loved going door to door.  It was starting to get cold, so we started to lock down on when we took Declan out.  But he did wear a Halloween sleeper and stayed inside with Dad while I took D & K around the neighborhood. I was the neighborhood witch, D was a zombie hunter, and K was a vampire.  Halloween is definitely my Favorite holiday.

mom and Dec.  I love this babe

 The house was lit up with lights, spiders and webs, all sorts of things.  The kids kept saying Thanks for a great Halloween mom.  So I'm happy.

D, K & Declan on Thanksgiving

Thanksgiving

Don't worry it was quiet.  We stayed home, and had a big dinner with some family.  All the trimmings, and not to mention all the pies... I say thank you, but my body was saying 

"What are you doing to me!"  

Oh well, that is what Holidays are for right?

My kids are getting so big, and they are changing daily.  Little D especially, he is growing up to fast and I am enjoying every minute of it.  We have been able to keep him healthy and he is showing us a world of miracles and of hope and dream.  Love it!

Christmas

All the stocking were hung with care, the tree was lit with bright lights and family ornaments, and Declan could care less.  He didn't care one iota for this big tall bright tree, or anything under it. All he wanted was mom, and then some more of mom.  This separation anxiety is getting really bad.  We are still locked up for winter rarely going out, we have cut out most family parties.  We did go to one party, my mother watched Declan so we could go, and since we wanted to show off our baby boy, hubby and I made a video of our journey so far, I will post that video on another post so keep your eyes open for that one.  Even though we did a small Christmas I believe the kids had fun, and enjoyed all they received.  Declan liked ripping the paper more than the toys, but he has a short attention span and pretty much loves anything you put in front of him.  Oh I forgot, anything except his food, then he just spits it at you.  Trust me my face has been the receiver of food at late.   We all stayed up for the New Year, yes even Declan, banged pots and pans and drank apple cider at midnight.  We are wishing for a better year with health, no more surprises (the bad kind), and getting into a new home.  

We wish everyone well, and hope for a cure soon!