Chloe's First Easter

This past weekend, we celebrated Baby Chloe's first Easter!!!  It was so much fun!!! 

 starting on Friday- Good Friday, we dressed our little bunny in her sweet little bunny outfit as you see in the pictures below.  She was happy as usual and waing it up for the camera!!!

Then she needed to take a short nap before we went to Good Friday Service at church.  Well I peeked in to see if she had fallen asleep while watching her mobile spin around, and I found this....

it was so cute- I had to snap a picture of it.  She had pulled her hair bow down to cover her eyes.  She always covers her eyes when she is sleeping, I think she likes it as dark as possible.  I just thought it was so funny, her laying there like this sleeping with her eyes covered with her hair bow.

We then woke her up and went to Good Friday Service at church.  It was so wonderful- such an awesome time of reflection on what Christ really did for us that day on Calvary.  We put Chloe in the nursery for the first time that night- and she was having NONE OF IT.  I was standing in church singing and I could feel that something wasn't right, that she needed me.  So as I was walking down the hall toward the nursery, they were coming to get me.  She was in a full out panic in there and wanted her Momma.  I was so happy to know that my "Mommy instincts" have kicked in and I could actually sense when she needed me.

Then on Saturday we interviewed a lady at her home about potentially becoming Chloe's full time sitter.  She was very nice and her house was nice.  She has a 10 mo old boy and 4 yr old boy.  The 10 month old is super sweet just like any baby that age.  But my biggest hesitation with this situation is that I noticed the 4 yr old being aggressive toward his younger brother and the Mom was rather slow to react to it.  I certainly don't want my angel to be a victim of his aggression while she isn't there.or watching every second.... so that is my biggest reservation.  We have another interview tonight, and we will continue to look.  Please pray for the right situation/home to come to us.  ;)

Then that brings us to EASTER SUNDAY!!!!  It was really a beautiful day!!!!  (Warning TONS of pictures below!!)  So after church we headed over to my parents for a cookout with our family.  There were so many people there but it made for a really nice day!!!

So we went outside and started taking pictures of my angel with her first Easter basket, and looking so precious in her Easter dress!!!  She still can not sit unaided so that's why my arm is in every picture  LOL !!

The sun was shining sooo bright that she had a really hard time looking up at the camera!!

Love these pictures of her on her belly!!!

Beautiful girl  :)

She was getting excited about all her new toys in her basket!!!

Next we attempted to take a family photo..... I look horrible.....I didn't even put lipstick on so I look so pale and washed out. And this is the only picture out of about 20 that Sweetness had his eyes actually OPEN!!!  All the rest his eyes were closed!!!  (again the beautiful sun was shining so bright!) But nonetheless we are a family and we needed our picture made together.

Then we took some pictures of Chloe with her grandma!!  This is my mom and Chloe's only living grandparent really.  But my Mom adores this girl- she has so many fun plans and dreams to do with Chloe one day :)

Isn't she beautiful??  And Chloe looks cute too!!!  My Mom is the amazing lady, who loves the Lord and has taught me to be of great morals, high character and to love others.  Everything I am or hope to be, I owe to my Mother!!!  She is just beautiful!!  Love you Momma!

Then we finally got home about pm last night, and my cousin and her hubby and youngest baby came over to meet Chloe and visit for a bit!!  They live in North Carolina and have 3 children actually, but just came up this weekend for a short weekend away and stayed on the beach.......Cool huh?

Well this is little Miss Kaylee and she is 11 months old and she is crawling and climbing on everything!!!  I hope Chloe was watching all that and gets to crawling real soon!!!  They were just so precious together!!!

Shortly after these few pictures were taken, Chloe crashed......she was soooooooo tired from all the stimulation.But she loves other babies.  She always goes right for them whenever we pass one while shopping etc.

And that about does it for Chloe's first Easter weekend!!!  I'd say it was a memorable one and I hope she can look back at these pictures for years to come!!!  Love you Chloe Bug!!

Getting in the Spirit of Easter

Have I said how much I loooove having a girl to dress up????

She is positively THE most adorable child- I mean I know I'm partial but this child is so cute and so happy- she just makes me so happy!!!!

Yesterday morning I dressed up my sweetie in a beautiful smocked dress (which by the way you will see many more smocked outfits on her, as I have found an ahhh-mazing site to buy these adorable smocked dresses and bubbles for my cutie) because she had to go to the Children's hospital to have her blood taken for the genetic testing, and while we were there, I wanted to take Chloe by the Infertility center that I went to and show her to all the wonderful ladies there that tried to help us so much.

 So we took the pictures you see here of her all dressed up, she just looked soooo sweet and beautiful!!!

 And then right after the last picture was taken....... she puked 1/2 her bottle on this sweet dress!!!!  I COULD NOT BELIEVE IT!!!  But then she smiled and I looked at her and asked her why she did that????  But the dress washed up beautifully and it's ready to wear again for more than 10 minutes  :)

 So then I put her in the white dress below and we headed out the door. 

We did get her blood drawn yesterday at Children's Hospital and it was not nice at all to see that terrified look in her eyes while they stuck her TWICE!!!  But hopefully we will get the results of exactly what type of deletion and genetic mutation she MAY have--- I for one am praying for a miraculous report of no genetic mutation, unexplainable really:)

 On to other news this week, I found this beautiful little TuTu hot pink dress at Target a couple of months ago, and have been waiting to put her in it.  I love it!!!  And they had a yellow and turquoise one without any writing on it that I bought in bigger sizes for this summer - can't wait !!!

 Playing with her egg light spinner....

And this cute little bunny onesie matched the shorts we already had so well!!!  I love this picture how she has her hand on the couch and feet crossed.... precious!!!

 Sweetness and I are excited about getting to be the "Easter Bunny" for the first time this weekend.  Although she wont be getting any candy, her new monogrammed basket is already to go and some new cute toys will be stuffed in it for her!!!

Our prayer is that all my readers and friends have the MOST BLESSED Easter weekend and that you worship the Risen Lord!!!  This is the best news that allows us to have hope not in this life but in the life to come!!!

PS- As I have been typing this blog post- an FA-18 Hornet fighter Jet crashed a couple miles from here to an apartment complex- very close to my Mother's office.  She is fine- but a truly horrific scene.  Please offer a prayer for those hurt and possibly killed in this horrible accident while attending Easter services at church this weekend.

Our first tooth and Visiting Grandma!!

Happy Friday!!!  It's Good Friday and this is such an important day in the life of a christian.  I hope everyone out there takes a moment to stop and thank the LORD for what he did for us!!!  It's Friday but Sunday is coming!!!

I have gotten a little behind in my postings of our princess!!!!  After we got her Easter Pictures done, we went over to my parents'  house and ate dinner with the family.  Well Miss Priss was hungry as well, and since she has been eating solid food now, my Mom wanted to feed her some sweet potatoes!! 

 If you don't know this about me already, I like my baby to be kept clean, but I also realize that the tactile senses are very important to be explored for correct neural development.  So we stripped her down to her diaper and just let her go at it.  She had SOOOOO much fun as you can see from these pictures.  I took some video as well, she was just squealing with delight!!!

 Such a fun memory!!!

 Then the day before that she was dressed in one of my favorite outfits, I actually ordered this online before she was even born.  I just love pink and black together and thinks she looked adorable.

Baby girl also cut her first little toofie this week!!!It is her front bottom tooth, and its just poking through the skin!!!  My baby is hitting all theses milestones and that means she is progressing perfectly.  That is now so much more important to me know with the diagnosis of NF-1 in her.

Which brings me to the last thing of this post.  I wanted to thank all of you for your kindness and prayers for my girl.  We are doing amazing as a family and Chloe is healthy and happy!!!  We are so excited to be able to celebrate her first Easter on Sunday and praise the Lord for His mercy and His touch on my girl!!!

Much love to you all...... and Happy Easter!!!  He is Risen!!

24 weeks old.....and a trip to see the Easter Bunny!!!

Hi everybody!!!!  I hope everyone has had a wonderful weekend preparing for Easter Holiday next weekend.  Our Princess is growing like a weed..... I spent Friday night cleaning out her closet and moving out the 3 month clothes and pulling in all the new 6 month outfits that I have been DYING to put her in.....

She weighs 15 lbs now and is pulling up and trying do hard to sit without assistance.  She is almost there!!!

So this past Saturday we took Chloe to see the Easter Bunny, but before we left the house I did a little photo shoot of my own, because she looked so darling in her purple corduroy dress and hair bow!!!

It's been a long time since I have taken a bunch of pictures of her and liked ALL of them, so I am posting them here in this post, so many cute expressions and I just LOVE her at this age!!!  She turned 24 weeks old yesterday and it's going way too fast!! 

 This is her pensive expression.....

 Of course pure happiness.....

 Caught between smiles.....

 And I think this is one of my all time favorites I have taken of my girl!!!  Just true beauty!!!

 Smiley and happy......

 Giggling at her Daddy......

 My angel.....

 and "Okay Mommy let's go, I'm done with all these pictures.  I want to see the Easter Bunny!!!"

So we went the "ritzy" mall in town, not the one we normally go to, and this Bunny was so lifelike, no white fuzzy bunny here- NO we had a brown HUGE bunny that was scaring some of those 2-3 yr olds to death!!!  I can't wait for my turn in a couple of years when she is screaming in her pictures too!!

But for today, it was a joy, like everyday with my girl.  She smiled so pretty and here is her very first picture with the Easter Bunny.  Of course I can't wait to tell her what this holiday is really about, and it's not the bunny or the candy.  I am so grateful I know the Lord as My Savior and that He chose to adopt me into His family through salvation.  I often think about this as I contemplate the story I will one day tell my angel about her adoption and what that word means...... 

we chose her, we desperately wanted her, and she is sooooo very loved!!!!

After we left the mall we went to my parent's house where she had a blast wit her Grandma eating squash and getting very dirty, which I will post the pics in my next post!!!  This kid is sooooo fun!!!  Stay tuned......

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

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!!!!