Thursday, March 29, 2012

Thank you.....

I want to thank you all for the amazing support we have received since the diagnosis on Tuesday. My friends have really shown how much they care and it has made this momma feel so loved. I am doing much better and I am ready to live LIFE FULLY and trust the Lord for the rest of our days!!

One other big thing that is on our minds heavily is that our AMAZING babysitter has decided to go to nursing school and close her in-home daycare.  We are SO SAD!!! I don't know how I am going to find anyone else or trust anyone else to watch my angel.  So to any of my friends reading this that are here local that know of someone that is wonderful and has an opening I would greatly appreciate the lead.

We have done some really fun renovations to the nursery, fun decorative things that I can't wait to share with you..... I will take pics this weekend and post them for you all to see.  Until hug your babies tight and thank you ALL for every single prayer offered for my girl.  I know the Lord is hearing the collective cries of His saints for her complete healing!!!  xoxox

Wednesday, March 28, 2012

A truly life changing day.....

I come to write this post with a very heavy heart today. I have not spoken of this much on here about the possibility of this mainly because I did not want it to be true so badly. But now that we know more, I will share with Chloe's friends what is going on.

Chloe's birthmom L, told me during her pregnancy that she had spots on her skin called cafe au-lait (meaning coffee with milk) spots that are mild skin discolorations but that spread over time. She also said she had some tumors in her back that began to bother her and she did not know what they were. Well after Chloe was born, the neonatologist talked to us before we took her home from the hospital and told us that he believed L had something called Neurofibromatosis. He said because of the cafe au-lait spots as well as tumors on her spine, that she was a textbook case. He then said that there were some VERY small markings on Chloe and that he wanted us to see a pediatrician that had some knowings about Neurofibromatosis (NF-1).

So that is what we have been doing. Her pediatrician is wonderful and has another child in the practice with this disease, but she of course could not elaborate because of HIPAA laws, but she has carefully watched my girl since she was 5 days old. 

Well 2 months ago I found some cafe au-lait spots on Chloe while changing her diaper in Olive Garden one day under their bright lights in their restrooms.  They are on the back of her legs and buttocks.  I wasn't overly alarmed but I did call right away and told the pediatrician what I saw as she had instructed me to.  Well at her 4 month visit last month, Dr. Lexier saw the spots and said I definitely needed to see the pediatric neurologist.  So I made the appointment and we have been waiting for yesterday to arrive when we would have some answers......  I dont' know what I expected, but it certainly was not what happened.

 After Dr. Loma, her neurologist at Children's Hospital examined her she saw the number of spots that has arisen (she has more now on her back and other places that I have never seen) and they measured them and took pictures of all of them to document.  So the number of spots she has as young as she is coupled with a definitive diagnosis in her biological mother of NF-1, lead us to our devastating news yesterday.
Chloe was clinically diagnosed with Neurofibromatosis 1.
My sweet happy beautiful baby is so blissfully unaware and that makes me so happy.  These pictures are of her this morning giving me her characteristic peace sign ......I adore her so much it literally hurts to think of what she may have to endure.  But it's like she is telling me it's all going to be okay Momma.

So the long and short of it, we are doing genetic testing to get a definitive diagnosis and what gene is messed up.  Basically NF-1 is a progressive neurological disease affecting all organ systems.  A tumor suppressor gene is misregulated allowing multiple tumors to grow all over the body.  The most common places are the brain, kidneys, eyes and spine.
 It can range from just having these spots and no other symptoms to very severe where the tumors that form on the ends of the nerves are very debilitating and can lead to worse things like leukemia and the like.  There is no way to know what will happen or how far Chloe's symptoms will progress, so we will just love her and continue to trust in the Great Physician to heal our baby.

Some of my faceb.ook friends already know this news as I posted it last night, and they have been asking what do I have to do now??  Well I have to get her eyes checked every 6 months to rule out optic glioma tumors.  I have to have her blood pressure watched closely, taken every 2 months, to watch for renal artery stenosis, and we will get a baseline MRI of her brain and spine at 1 year old.  And then we LIVE LIFE!!!

As devastated as I am over my baby, I also am going to make every attempt to live life not waiting for the other shoe to drop, and cherish the miracle that she is.  Nothing has changed from yesterday morning, she is still my miracle, still my baby I longed for, still loved so much it hurts.

I will keep you updated, and this blog may turn into a documentation of living with Neurofibromatosis as well, but we are all one doctor's visit away from a life changing day.

In closing this post I ask all my brothers and sisters in Christ, as well as anyone who reads this blog in the blogosphere, to offer up to the Jesus of Nazareth, Our Jehovah Jireh, the great Healer, to HEAL my precious girl, and may she be a testimony of the goodness and mercy of the Lord.  And even if the Lord does not heal her- She will KNOW Him and love Him.  God made us a family- and we will cling to Him!  Thank you all for your prayers!!!!

Monday, March 26, 2012

23 weeks old and a trip to Cracker Barrell!!!

Wow what a long week last week was. I was draggin' and I mean draggin' at the end of the week, just wanting to sleep is all my body wanted. I got some this weekend and now I am refreshed and ready for this wonderful week in my baby girl's life!!!

So of course yesterday being Sunday , she turned another week old and she is now 23 weeks old!!! She is so much fun at this age- and just the right size in my opinion to hold and laugh with and snuggle and kiss ALL. DAY. LONG.

She is just a little angel I tell you. The sweetest child, and the best behaved I have ever seen. She is such a delight to have in the house and I love taking her out in public as everyone tells me how much she looks JUST like her momma (me)!!!

Today when I took her pictures, she just sat there and let mommy take as many as I wanted and she knew she was looking beautiful as always.

Well my sweetest friend Tara came into town last week and she spent Thursday and Friday nights with us and we had such a lovely time. Remember Aunt Tara lives in Pennsylvania and was at the hospital when Chloe was born and was our first visitor!!! Chloe loves her Auntie Tara and Saturday after sleeping LATE- we decided to go have lunch at Cracker Barrell!!!

and there just happened to be a great photo props for my girl--tons and tons of rocking chairs!!! yeah baby.... soooo precious!!

Everybody walking by thought she was the sweetest thing and she just hammed it up! These were taken on my iPhone so they are not as good quality as my other pictures but they are so precious I wanted to put them on here.

Then I sat her in the baby rockers and she looked perfect- just her size......

And then Tara wanted us to take this one and I have to admit I was slumming it that day in the outfit department, was not trying to have my picture made, but these are the times that I will cherish with my girl- so why not??? So cute! Having Daddy in the picture with us was even better!!!

So thats about it!! She has done wonderful eating her sweet potatoes this past week, and today her sitter will start carrots!!! Yeah!!
Speaking of my sitter- I will post more on this later, but I picked up Chloe on Friday afternoon and she tells me she is closing her in-home daycare and we have until April 27, 2012 until she closes. I am so upset by this. I love her and the care she takes of Chloe and I don't know what to do now. She said she would try to help us with the organization she is a part of to find new sitters. But man this one BITES.

I'll keep you posted. Until next Time......

Thursday, March 22, 2012

Chloe eats food for the first time!!!!

Baby girl is getting so big SO FAST!!! I am so happy to report she has passed a huge milestone in her life!!!! She has tasted FOOD for the first time!!! There is a short story behind why we started it when we did...... Monday her sitter Sam called me and said she thought she has pinkeye and that I needed to come pick her up and take her to the doctor to be sure before she could return. Can we say UGHHHHH?????

I knew she didn't have pink eye , just a few hours prior to that when I dressed her, her eyes were perfectly fine, but alas I picked her up and we went to the pediatrician and lets just say that having someone poke in your 5 month old's eye is NO walk in the park okay??? She screamed bloody murder!! So after they saw that she did not have pinkeye, they looked with a special lamp and saw that she had scratched her cornea!!!??? What the ??? Guess she did this with her fingernails..... So we spent the afternoon together which was awesome and I got to buy a very expensive, very TINY bottle of eye drops to put in her eye to heal it and that was that.

However, while we were there, I asked Dr. L if we could start her on food because she eats her rice cereal off the spoon very well now and I think she is ready. And she whole-heartedly agreed!!! So she told me to start with orange vegetables first (bc they are easier to digest) and then green ones and then move to fruits.
So her sitter and I started with sweet potatoes first and she LOVES them!!! She ate 1/2 of a jar the first day for lunch and the other 1/2 the first day for dinner!!! My girl loves food!!!
I just love this kid!!! I took her beautiful clothes off, because why get it all over her outfits just to have to wash them when as soon as these pics were taken, she was straight into the bath where she splashed around and got all clean, then had her bottle to get most of her nutrition still, and then went night-night and slept her usual 12 hours!!!!

When I say I have the perfect child- I mean I pretty much do!!! I am just soo soooo blessed!!!

And this past Sunday she went to the park for the first time with me and 3 of my girlfriends!!! She wore her sunglasses and what a hoot she was!!! She enjoyed all the sunshine and children running around, it was so nice to be able to take her to the playground now and watch her enjoy other children. This is my beautiful friend Robin holding Chloe at the park.

Well that's all for now. I know I have still not posted her 5 month pics in her 5 month onesie nor her 22 week pics..... life is busy and I do good to get up the posts on here that I do. But I hope you enjoy the pics of my girl she sure is the most precious gift I have ever received!!!

PS- Oh several of you have emailed and asked, the pediatric neurologist appointment is this Tuesday, March 27th at 2:20pm EST so I would most definitely appreciate prayers, and I will OF COURSE update after that appointment to fill you in on the situation and see where we go from here. xoxo

Tuesday, March 20, 2012

Chloe's Professional Spring Pictures

Baby girl had her Spring pictures made on Saturday and they turned out so adorable. of course not all of these I posted heree did we buy, but I wanted to post them here so they will be pinted in her blog book forever. OF COURSE we bought TONS of this first and second image in her Easter dress as it is our all time favorite picture!!!! She has never looked more beautiful!!!

I am not going to offer anymore commentary on these pictures, just let you scroll through them and comment on the ones you like and what your overall thoughts are of the shoot. The black edges in some of them are just in the proofs and the were cropped out in the final prints.


Monday, March 12, 2012

21 weeks and my 300th post!!!!

Hey Guys!!! I can not believe it is already March!!! But we will embrace it and dress up our little princess like the doll that she is!!! I don't know what I did for fun before I had her..... really don't but I am having so much fun now!!

So baby girl is now 21 weeks old.... she weighs 14.6 pounds. She is has now moved into size 2 diapers and some stuff she is in 3 month clothes and in some things she is in 6 month clothes. depending on the cut. I'm told she is long and slender, I think she is just right!!!

But I know one thing---- she is so happy all the time- I wish I could be so happy all the time!!!
So after these few smiles, she clammed up tighter than a bug in a rug, an she was determined to not give anymore smiles no matter what!!!!
The "pouty" lip look was actually quite funny, and very hard to pull off!!

She was letting Mommy know she was done with the camera thing for the day, She was Done! My mom bought her these socks to go with her precious array of St. Patty's outfits....They say "My First St. Patrick's Day" on them.......

She is such a mess, and such a fun, sweet child...... It's hard not to love her to pieces. I miss her so much through out the day that I text her sitter to see how she is and what she is up to. Somedays I get little pictures back of what she is doing.... I looooove it!!!

This was her pretty Silver Tutu dress and she looked so adorable in it!!! We are going to have her Spring/Easter professional pictures made this upcoming weekend and I can not wait to see how beautiful they come out!!!

Now to an item I have been promising to post about forever....... his Valentine gift!!! I got the idea from, but just printout This on a normal sheet of paper, go buy any kind of 3-D colored heart of your choice at Micheal's and also pick any frame you would like to go with your decor........ then your two items go so great together!!!!!!!!

Then attach a dry-erase marker to the top with special ribbon so he (and I) can always write on there anytime we feel like it!!! You write on the glass, and it wipes right off because it is dry erase marker!!! Something like this!!!!!!!!!!!

One last finishing touch, was we got double sided Velcro to put it on our refridgerator, so it wont fall and it brightens up our days and strengthens our marriage!!!!!!
It looks something like this when put in its final home!!!!!!

One last thing that I accomplished this week, was I finally got Chloe's Easter Basket ordered with her name monogrmmed on it. All my friends' children, they have these beautiful baskets with these linings with the child's name monogrammed on it, and of course my princess had to have one too!!!

I finally found one that was very reasonable online and it arrived only 2 days later!!!! Here is a picture of it and I am VERY happy with how it looks!! That is a big Easter basket to fill every year!!! But this will be HER basket every year from now on!!!!

Well that's about it for today...... Oh and this is my 300th post- kind of cool!!!

Until next time!!!!!