Monthly Archives: April 2014

Austyn Jayne, spunk, sass, and a whole lot more!

I have to write another post about Austyn Jayne, because she is almost 3 and we butt heads like crazy some days right now! But I love her to death, and on other days she melts my heart with her kindness and fills my days with laughter and smiles!
Lately Austyn Jayne has been in the “why?” phase, and it is a challenging one! She isn’t just being curious anymore and asking “why” because she’s interested in the reasoning, now she is demanding to know “why” it’s bed time, or “why” she needs to clean up her toys, and “why, why, why?” She can also snub people better than anyone else I know! Don’t ask her for a kiss or hug goodbye, she will place her hands perfectly on her hips, turn her nose up to the sky and say, “no, hmmm.” Lovely, I know, where does she get this little snippy tude?! But my goodness can she be the sweetest little thing too!!
Her new favorite play time activities are playing doctor and playing with Colbey Raye’s new “little People” princess castle and dancing to the songs. By the graceful, thought out moves she makes you would never guess she has that spit fire attitude inside! She can twirl and bat her eyes as gracefully as any sweet Girly girl 3 year old can! But she is not much of a girly girl to say the least.
Now this little spunky, independent, crazy child is also the best big sister I have ever seen! She’s not even three yet and she takes the best care of Colbey Raye. She shares her snack, even her candy (even though she’s not supposed to) with Colbey, breaking of tiny pieces so sister won’t choke. Today she bit a small piece of a jelly bean off and plopped it right into Colbey Raye’s mouth saying “it’s okay mom, I bite yittle pice for Co Raye.” Also tonight while I was cleaning up the kitchen, I heard giggles coming for the living room, so I snuck in and saw Austyn Jayne lying on the floor with Colbey Raye on top of her, and Austyn Jayne was letting sister kiss her face. Colbey Raye was in heaven loving on Austyn Jayne! They both just love each other so very much.
Austyn Jayne has been very interested in helping us with Colbey Raye’s medication load. She will carry the syringes of medication to the place were we give Colbey her medicine, she will shake the ones that need to be shaken, she will even help administer the medication to Colbey Raye, with assistance from mom or dad, but she is so good and cautious that she could probably do that part without our help! She is even learning the names of each one, and has started to know which is which by the color is size of the syringe. For those of you who administer/take medications like these you can understand how difficult it is to pronounce them! And our almost 3 year old can say the names better than some nurses :).
Speaking of nurses Austyn Jayne is the best little doctor around town! She wants to fix all out tummy aches and pains, she carries around her little doc Mcstuffins doctor bag and knows all the names of the equipment in her bag, and also know exactly what each is used to check. Our blood pressure always reads “nine a noon”though, so I’m not sure if we should be heading to a real doctor for a check up or not, those numbers just don’t sound right to me 😋!
One of the things about Austyn Jayne that makes me smile the most is her sweet loving words she can use. Not always does she choose to be sweet and endearing, the other day I asked her for a nice big kiss and she replies with “I’m giving you a big MEAN kiss mommy!” And dove in with a snarly look on her face and an open wide mouth, so much for sweetness right? But other times, usually at night she just melts my heart. We always brush her teeth, tuck her in bed with a binky, her blankets and I say her good night prayers, after prayers I bless her forehead and say “God bless you Austyn Jayne, I love you.” And as I walk out the door her sweet little self responds “God bess you too mommy, don’t yet the bed bugs bite.” How sweet is that?! For all the moment I just want to put her in her room, or wash the naughtiness out of her mouth she sure makes up for it with the “I love you mostests” and “God bes yous” and sweet words and kisses to Colbey Raye.
She’s full of love, when she’s wanting to give it, full of jokes “hay is for horses” and putting her finger in your year, full of honesty, compassion, and an amazingly brilliant imagination! Her spunk is a lovely thing, her attitude can be challenging and her headstrong personality may push me to my limits, but she is sincere, honest and understanding, she isn’t jealous or spiteful. She’s a busy, mouthy, loving 3 year old! A challenge, a blessing, and the person who pushes my buttons more than anyone else right now 😊, I love her more than words can explain, she is an amazing little person and her strength and personality will take her places, she will be something amazingly great one day! I love you Austyn Jayne, and you are the best big sister Colbey Raye could ask for, and the best little girl a mommy could be blessed with!

Colbey Raye
Just a short little Colbey Raye update, today Colbey Raye had 2 hard seizures. Both came about a half hour into her nap, on this morning and one this afternoon, and I could tell they were hard on her. She was very dazed, dizzy, and super sleepy after them. We are praying these two are just a few hiccups and that this isn’t the start to a typical trend of events that lands us in the hospital. A month from tomorrow is surgery day, and we are just praying we make it that long without any major seizure outbreaks and that she can remain in this honey moon phase long enough so we don’t have to rush into surgery sooner than planned. Otherwise Colbey Raye has been doing very well! A few mild episodes here and there, but all in all she’s been great. Than you for the continued support, and prayers! We are truly blessed by all.

A birthday letter

I wanted to write a special little birthday post for Colbey Raye, but I kept changing my mind on how I wanted to go about it. I thought about throwing out facts, and mentioning how much time has been spent in the hospital this last year or how many tests have been run, procedures have been done, but we all know it’s more than any baby should go through, am I right? I decided to write a little letter addressed to Colbey Raye, about what I’ve learned through her, how amazing she is and what a blessing she has been to this world. It’s a few days late but better than never!

To my sweetest little Colbey Raye,
Today is your birthday and you are One year old! I can still remember the very first moment I held you, it was the happiest, most rewarding day of my life. I was determined to deliver you and I’ve never felt more rewarded by hard work and determination than that first moment you were set in my arms, I was the champion and you were my trophy. My perfect, dark haired, snuggling, hungry trophy and I wanted to share you with the world! Little did I know that soon I would be sharing you with this world, but in a way I never imagined.
I want you to know how much you have helped me grow, how much you have helped our family grow and how much you have changed our life for the better. You have opened my eyes and my heart in so many ways. You have taught me what true selflessness is, what true strength is and that everyone deserves a smile, no matter how hard our days might be. Even on the hardest days, and in the moments I couldn’t see to the end of the tunnel you gave me a reason to be thankful, to be happy, and the faith to keep pushing onward until the light finally broke through.
In one year you, my strong girl, have managed to touch the lives of many, from family, friends to some we have never even met. You have been blessed by an abundance of prayers, and built up a stronger foundation to my grounds of faith. What a true blessing you are, and what a perfect little present from God. Ive never met a happier baby, you are a fighter, and take each challenge you face head on, nothing brings you down. You take every opportunity you get to give a smile, what a true gift that smile is to my life. In that short first 6 weeks of your life, before the seizures, before all the hospital trips, and medical facts, I thought you were perfect. You were healthy, happy, a typically challenging new born who spit up and demanded love and attention. And now almost a year later you are still the same perfect little girl, just bigger, and happier than before! With a few hurdles to just over and life lessons to learn and to teach. Every child is born to do great thing, and you have already achieved greatness!
Happy birthday sweet girl, you have given us a year full of amazing memories that will never be forgotten! I love you,
Forever,
Your Mommy

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Surgery round 2…

Yesterday Josh and I took Colbey Raye up to Seattle to see doctor Ojemann and discuss what the next steps for surgery are. Last week we were given a few different dates for surgery, we made out choice but wanted to discuss the urgency with Doctor Ojemann before setting it all in stone.
Some details about this upcoming surgery; it is a full hemispherectomy this time around, Dr. Ojemann will be cutting the same opening so it will still be the one scar, and he will be removing a big portion of the frontal lobe and some surrounding areas so he can get to the deeper part of Colbey Raye’s brain to disconnect the rest. The back portion will be mostly disconnected instead of fully removed in hopes to reduce the need for a shunt. Even though there will be areas of Colbey Raye’s left brain still intact they will not be functioning. This surgery has a 60% success rate in achieving complete seizure freedom, these odds do sound much better than the 30-35% chance we had with the previous surgery. Our number one goal is to control the seizures as best as possible and with this surgery we all feel it is the best way to achieve that goal. Colbey Raye will most likely be on medication for the remainder of her life, but our hope is that it will be a smaller quantity. Because the entire left side of Colbey Raye’s brain will be gone or disconnected there are more permanent side affects that will impact Colbey’s abilities. She will lose the peripheral vision in the right side of both eyes, leaving her blindsided on the right side. Her fine motor skills will be greatly affected in her right hand, and possible her right foot. She will be able to use her arm to help move things in her direction and possibly be able to gain enough strength and coordination to use both hands together to pick something up, but she will most likely not be able to pick up objects with just her right hand. Her right leg will regain more strength and control than her arm, and she will most likely be able to walk and use her leg/foot just fine in time. Things such as talking, walking, and learning certain things will come later for Colbey Raye, but doctor Ojemann is very optimistic that in time Colbey Raye’s cognitive abilities, and speaking abilities will catch themselves up. By stopping the seizures Colbey Raye’s healthy brain will be able to start resting so it can begin to learn the things that have been difficult for her to learn thus far. She has improved so much in this short 3 months since her last surgery we are very hopeful she will have a similar recover after this second surgery.
Surgery is scheduled for May 22nd. Because this is a more in depth procedure the recovery time is a bit longer. She will most likely be in the hospital 10 days after surgery and will require some extra feeding help for a few days. In the mean time we will be preparing for the big day, enjoying time with each other and loving on sweet miss Colbey Raye as much as possible. The next few weeks will fly by and I just want to soak up every smile, every giggle and ever snuggle Miss Colbey Raye has to give. Time is precious and to often we let it slip away. Knowing that God is in control gives me peace of mind, and even though I might think “are you sure I can do this” (been a question in my head over a few different topics lately 😋), I know His plan is greater than mine! He pushes us so we can succeed, and successful we shall be. Thank you to everyone for your prayers, thoughts and support. We appreciate it so much and it has helped us in these hard time so much!