Just a little update...

Noah enjoyed Christmas very much...he was all about ripping the wrapping paper and checking out his new toys...it was a blast! Special thanks to the lovely ladies that got us a tree and decorated, it definitely made our Christmas a lot brighter! It was so exciting and overwhelming to come home to a very neatly decorated tree with gifts and other decorations. Thank you!!

Noah's appointment for the 27th to get his AFO's was rescheduled to the 6th of January because the vendor for the stander wouldn't have been able to make it. So a little more waiting..... Yesterday I went to my 12 week appointment and heard our "Peanut's" heartbeat for the first time. I am trying to stay positive but it is so hard to do as we continue to watch Noah struggle. I am anxious and scared to death about the amnio and results but we will continue to cling to God and each other for hope.

I wanted to take a minute to Thank everyone that has made donations, prayed, thought and even shared our story with others. The love and care that has been shown is so very much appreciated. We definitely cannot thank everyone enough for their generosity. I am terrible at thank you cards but I am working on them as I get the chance. Again thank you all so much for everything. We pray blessings over everyone as you have blessed us!

As time passes on....So quickly

Last week Primary Children's called because they had a cancellation. So we were able to get Noah in three weeks sooner to get his legs casted for his AFO's. (AFO's are Ankle Foot Orthotics which provide the support he needs due to his muscle weakness). We will be picking them up on the 27th. That day we will also be meeting a vendor and getting him fitted for a stander which he badly needs.

Last Friday, Lane and I got the call from the genetic counselor to inform us that we are both for sure carriers of SMA. We will be having an amniocentesis done on January 30th at 17 weeks.

Noah has had some nasty granulation tissue forming around his G-tube (different spot than last time). On Monday, Lane and I took him to Dr. Scaife (surgeon). He gave us a steroid cream and said that if it didn't help that the tissue would need to be surgically removed. Not good.....So please say a prayer for that....

Each day brings new struggles for Lane, Noah and I. Trying to deal with this disease is the hardest thing we have ever done. Each day passes by at lightning speeds and I feel as though it is in fast forward constantly. I am running to keep up but falling behind....it is unimaginably hard. I feel as though life is dragging me by my feet... With Christmas approaching it is different this year. I can't seem to get in the spirit. We still have yet to put our tree up....(but with that said we just moved last weekend so I get a little break...right?) It is also hard to see that each day it seems that another child has lost their battle with SMA. These winter months are so hard on them. It is a constant reminder that we have no idea how many Christmas' we will get with our beautiful little boy. It brings about the fear of the unknown. We are so excited that he is now consistently gaining weight, but the weight gain brings more struggles for Noah. It wears on his already weak and frail muscles. He has that much more weight that he has to maneuver. It is very apparent as it seems he struggles more and more to drag his body around and has also started tipping over move often when in a sitting position. It is truly heartbreaking.....

But life goes on anyway....83 days have passed..

Unbelievable....!!!

So where do I begin?

Since Thanksgiving we have been through a whirlwind of events....Let's begin with sweet little Noah...

The EI group came by on the 29th with the PT. They evaluated Noah to determine what type of therapy he will need. They showed Lane some exercises to do to help prevent Noah from getting contractures (shortening of muscle or joints because of lack of use). They will be coming and doing therapy two times a month. They will also be helping us with getting Noah a stander.

Now is where even more stress is added to our bucket...

Lately I have not been feeling great....Tired beyond sleep deprivation....sheer physical exhaustion to say the least. I thought that I was getting a cold or the flu but boy was I wrong. Lane and I talked and the more symptoms I began to have the more we both thought that I should take a pregnancy test. I put it off for a couple weeks just being busy with all of the usual things in our life....Finally the day after Thanksgiving I got a test. I sat in the bathroom for a long time thinking.....Take the test, it will be negative and life goes on right??? WRONG!! When the line turned blue I was immediately filled with more emotions than I could handle. Excitement, joy, happiness, fear, worry, and panic. The thoughts that ran through my head were overwhelming. I sat there and sobbed. I showed the test to Lane and he began to smile and then he cried.

We are scared to death. We know the statistics...and this is not something we planned on gambling with.

We have a 25% chance that this baby will also have SMA. We have a 50% that this baby will be a carrier like us, and we have a 25% chance that this baby will be completely unaffected. We are praying for the 75% chance that this baby will be ok.

However, we do believe God sent us this little miracle for a reason. It is not something we can explain or even begin to comprehend, so instead we will accept it.

We went to the doctor on 11/30 and the ultrasound confirmed that I am 8 weeks pregnant. Lane and I began to do the math. This miracle was conceived just two weeks after Noah was diagnosed with SMA. During this time of tremendous stress I had lost 8 pounds.....8 pounds I didn't have. Lane and I were sure I would not be able to get pregnant again without help, but we were proven wrong.

This baby, like Noah, truly is a miracle and a blessing.

Yesterday we met with a prenatal genetic counselor....It was a very depressing visit to say the least. We went through the entire genetics of SMA down to the molecule level....which is pretty deep. It showed what a brutal and cruel disease SMA is genetically speaking. Lane and I are both having our carrier screening status checked as well as how many deletions of the gene we have. We will have the results in about a week. In January we will be having an amniocentesis done to see if this baby has SMA. We are praying and hoping for the best and trying our best to give it all to God.

The outcome has already been set and determined, it was determined weeks ago....it is all a part of the master plan....Now we just wait.......