Finding the time....

Yes I know, I am absolutely awful about blogging. Finding time to sit down in front of the computer doesn't come around much anymore. Things are definitely getting better, a little more normal organized less overwhelming... at a loss for what to call it. As I have said before it isn't what most people would call normal but to me it is my new normal and I love it.

We are getting into a routine. We have been blessed to have amazing insurance with Jeremy's new job. We are able to have a home health nurse during the days now. It is a life saver. I didn't realize how incredibly stressed I was. She has helped me out more than she will ever understand. It has helped relieve my stress level tremendously. Since we are now a single income family, Jeremy can't take off for every appointment. I can't say enough how much it means just to have someone to go with me to the multiple appointments every week. Another set of ears to be there to help intake all the information, the tips, the therapies, the instructions, the list could go on and on. To give me a break from the constant feeding routine of attempt a bottle, put it through the g-tube, clean the bag, wait an hour and start over. Pretty sure Dylan likes having her around too! Me and him are able to get out, just the two of us.

Speaking of that good-looking little boy... he is getting sooo big. He is now almost 28 months. He is talking up a storm. I refer to him as my "wild one". :) If you spend more than 30 minutes in our presence, you will understand. He is full of energy and personality. That can be a good and bad thing for a two year old. He is fearless. Extremely strong willed. His vocabulary is incredible for his age. He can finally say motorcycle, I already miss him calling them "knuckles". I love it when he looks at me with those big brown serious eyes and spurts off "I will be right back" while running off to do something 'important'. His favorite toys are cars and trucks right now. I love watching him sit and play by himself. He no longer calls Brooklyn, Brooker, but now refers to her as Sissy. They love each other. It melts my heart to see her light up when he is near. She still laughs when he cries, which cracks me up. I think she got her Mimi's personality. ;) Just joking Mom.

She is the absolute happiest baby. I love, love, love her smile. I can not believe that in less than two months Brooklyn is going to be one!! This year has flown by. Two weeks ago she had her surgery to fix her tethered spinal cord. The surgery went great. I was a nervous mess leading up to it and after, but she pulled through with flying colors. This picture was taken the day after surgery. It was the first time she had smiled since coming out of surgery and it was the absolute best cure for a tired momma.

You would never know today that she just had surgery. She is so strong. Such a little thing but a fighter and does it with a smile (unless you are making her do therapy, leaving that to another post).

She has met so many milestones just in the past month, even with having surgery. She rolled over to her tummy three days after having surgery. She is bearing weight on her arms (this is huge :). Her eyesight is improving leaps and bounds every day. We went today to meet with a new ophthalmologist. She has recommended patching Brooklyn's right eye 1 hour daily for the next 4 months. This should help make Brooklyn, work her left eye more. She could tell from her exam Brooklyn will have to have glasses but that will come later. I will post some pictures of our little pirate in the next few days. :)

Break - bottle time

Okay with that break, I have lost my train of thought. I better call it a night. Brooklyn has OT at 8:30 in the morning and a nutritionist visit at 9:30.

Love to all~
jen

"This is the Stuff"

I remember the day I found out that I was pregnant with Brooklyn like it was yesterday. Jeremy was in California on a business trip.  I had to take Dylan to daycare that morning and then go get my oil changed. First thing out of bed I took the pregnancy test. Totally completely astonished by the results. I was so excited and yet so scared!!!! This was not planned....Dylan was only 10 months old....How in the world would I tell Jeremy?


On the way to drop Dylan off I remember the song "This is the Stuff" by Francesca Battistelli coming on the radio. It brought tears to my eyes but I was laughing because it fit so perfectly! If you aren't familiar with it here is the chorus:


This is the stuff that drives me crazy
This is the stuff that's getting to me lately 
In the middle of my little mess
I forget how big I'm blessed 
This is the stuff that gets under my skin
But I've gotta trust You know exactly what You're doing 
Might not be what I would choose 
But this the stuff You use

The song came on the radio the other day; of course I turned it up and sung at the top of my lungs. It didn't take me long to realize I was meant to hear that song that morning. That song still to this day means so much in my life and fits so perfectly.

I am not always extremely open with what an average day in my household looks like. Those of you who have witnessed it knows my "little mess" of a 2 year old and an 8 month old with a disiabilty might not be ordinary but its my "normal" and I am extremely blessed!! 

Our journey with Brooklyn might not always be what I would choose, but I have to remember that God knows exactly what He is doing. He has a plan for her and for our family. 

So break me of impatience
Conquer my frustrations
I've got a new appreciation
It's not the end of the world


See why this song fits me?? It has almost been a year this week since I got the call from my OB that started this journey... that there was something wrong. It has been a long waiting game since then. But God has taught me so much. He has changed my heart. Each and every bit of news the doctors tell us, I just add to my memory bank and keep on trekking!  It isn't the end of the world. Every day is a new day; a new day that God has given me and my beautiful family a breath of air to keep on going. God is the ultimate healer and physician and He knows exactly what he is doing.

Brooklyn Elizabeth Polk

We'd like to start off by saying thank you to everyone for all of your prayers, words of encouragement, and love over the last few months. We couldn't have made it this far without you and are sincerely thankful for the impact that all of you have had in our lives.

Earlier today, we met with the geneticist to go over the results of the genetic testing that finally came in last week. The testing revealed that Brooklyn does not have CFC as the doctors previously thought. Instead, she has a similar genetic disorder called Costello Syndrome(CS). Costello Syndrome has many of the same symptoms as CFC and several of the other syndromes (Turner, Noonan) the doctors thought Brooklyn might have. It is extremely rare (less than 300 cases worldwide). There is only one gene that is responsible for Costello Syndrome, but there are several different mutations of that gene. The gene mutation that affects Brooklyn is called G13C and is rare even among people with Costello Syndrome. From what we have read, there are less than 10 people with Brooklyn's mutation in the world.

Unfortunately, Costello Syndrome is thought of as more severe than the other related syndromes because of the increased developmental delays and the high probability of cancer in people with Costello Syndrome. The great news is that there are no known cases of someone developing cancer with Brooklyn's gene mutation. Just like the rest of us, no one can rule out the possibility of cancer, but hopefully her chances will be pretty low. We will be taking her in for regular chest and stomach sonograms to screen for tumors. She'll also get regular brain MRIs and a urinalysis to check for the same thing.

The doctor did comment on how impressed she was about Brooklyn's oral skills at this age. Most people with CS don't start eating by mouth until age 2-4. She is already able to take some bottles which is a great sign. Also, all of her heart issues are very minor. The doctor commented that Brooklyn's heart conditions are milder than most children she she's with some of the other "better" syndromes.

We are so grateful for this little girl and are thrilled that God has entrusted her to us. She is His perfect creation and we know that he created her this way for a reason. He has a plan for her and for our family that we don't understand right now, but in His time will be revealed to us. We will push her to do as many "normal" things as we can. We will not shelter her forever and will encourage her to try new things. She will love, she will laugh, she will succeed, and she will fail. Just like everyone else. We are committing our family to live life to the fullest and appreciate every day for what it is...a gift from God.

Below is a youtube link of a video we put together:

http://youtu.be/7_Mq-R4PkVY

We love you all,

Jeremy & Jenny