Update

Finallllly getting a second to sit and type an update. (Ansley's napping on me!) grin!

Thank you for all the encouragement and love while we were in the hospital last month!

We went in the beginning of November for a few days because we thought Ansley had an apnea episode but ended up being a seizure manifesting. She had two real seizures while we were in hospital. She was already at the end of her weining schedule for her steroids (for infantile spasms) so we made the decision to put her on an anti seizure medicine. 

We then went home and were waiting on a barium swallow study (to make sure Ansley's feeding issues weren't due to because she COULDNT swallow) and waiting for appointments with GI & Nutrition. As soon as we started weining Ansley off her steroids we saw her feeding go back to it's old patterns. She would eat .5-1 ounce and then be done. She just didn't realize she was still

Hungry. We tried EVERYTHING. She was averaging 13-16 ounces in a 24 hr period. It then started rapidly declining. She got down to 5 ounces so our pediatrician (at the time) told us to take her into the ER. That's when it allllll started. In a nutshell, went in, got admitted, hooked her up to fluids and continued trying to feed. We had speech therapists come in and we tried all kind of different bottles, techniques, etc. She just wasn't interested. We put an NG Tube in for 3 days and she was MISERABLE. She totally refused to suck and basically screamed for 3 days. Poor zing. So then GI, Speech Therapist and the Attending Physician came in and we all decided on the G Tube. Ben and I did a lot of praying. We had a feeling it would come to this but still super scary. Decided to do the surgery and she did fabulous. Unlike her momma and daddy who were a nervous wreck. She had a hard time recovering and was in a lot of pain (apparently more pain than normal) so put her on pain meds and started gravity feeds thru the tube. She had a very hard time tolerating the feeds, as she wasn't used to so much food. The Nutritionist and MD were trying to pump her full and she just kept throwing up over and over and over, poor girl! Momma finally had to put my foot down and tell them to take it slow! She wasn't used to eating at all!!! We finally found out a rate and volume that worked and after 13 days we went home!!!!!! Ben and I got home and we looked at each other and said "oh my goodness we have no nurse to buzz if something goes wrong!" That night was crazy with medical supply company and nurse coming to get us all set up. 

Went thru the weekend and Ansley did great on the tube. She did some bottles during the day and tube fed at night. Then she started running a very high fever, ended up back in the ER with a UTI. This poor girl couldn't catch a break. Thankfully we got antibiotics and got sent home. 

Ansley has been doing wonderfully. She takes most day feeds by bottle and is tube fed all night long. We are working on increasing her bottle volume and she lets us know what she thinks about that! ;)

Ansley is still in Vision Therapy weekly and doing great!!!! Her eyes are open 95% of the day which is AWESOME and she even "tracked" a lighted object with her right eye. YEAH!!!!!!!!!!!

We just started Occupational weekly and Ansley loves her Therapist! She works hard!!!!! We will start Physical and speech in January. 

Thank you so much for all the support and love. For those asking how they can help Prayer is most important!!! Pray she continues to thrive and prove the Doctors wrong. If you would like to give, it helps supplement my income as I've had to stay home with Ansley to help take her to weekly appointments and therapies. We have a paypal, benkatierice@gmail.com or a GoFundMe account at http://www.gofundme.com/f3a2n0

Thank you so very much for loving our Fancy Ansley!!!! SPARKLE ON!!!

Update

Whew.... Hopefully life settles down soon! I am beat!!!! 

We were in the hospital last week. I was holding Ansley while she napped (story for another day) and she stopped breathing for a few seconds. Was EXTREMEMLY scary! Went to hospital and she ended up have a seizure (not spasm) so they are thinking the pause in breathing was a seizure manifesting. We knew it was a possibility that her spasms could turn into seizures. We started her on an anticonvulsant and are continuing to wein her off steroids. 

Ansley's feeding issues have resurfaced as we started weening her off steroids. We just saw an ENT today and scheduled a modified barium swallow test for December. She looked in Ansley's nose/throat (with camera) and discussed that Ansley's reflux is pretty bad even on Zantac. So referring her to GI for reflux issues and to discuss feeding issues. Ansley currently is averaging 15-18 ounces a day, we need her around 28. It's so stressful to try and get her ounces up. Momma and Daddy want her to grow and thrive! 

On to the good stuff, Ansley has rolled over (front to back) a few times! It's so so sweet to see!!!! She also brought her hand to her mouth twice last night! GREAT improvements! She's also opening her eyes so much more. Which is a great first step to vision! She's currently in vision therapy weekly and start occupational soon. 

Thank you for all the sweet prayers and concerns! 

If you would like to help, we have a paypal benkatierice@gmail.com or http://www.gofundme.com/f3a2n0 

Early Steps Evaluation

Yesterday we had an evaluation with early steps. They look for physical, occupational and speech needs. Since Ansley is developmentally delayed due to vision problems and Lissencephaly, a lot of her "skills" are newborn-2 month level. They played a lot with her on the floor to see what she can do. She's so close to rolling from tummy to back! Her grasp is improving and she's way more flexible. They were concerned with the delay in her skills, that she isn't sitting, bringing feet to mouth, grasping toys, holding bottle, etc. We are going to start with a weekly occupational therapist who will work on all this including her feeding (suck/swallow) issues. If she can't get those under control we will call in a speech therapist. They were very sweet and just loved Ansley. We set many goals for 6 months and looking forward to see Ansley  reach and surpass these goals. 

Want to help? Prayers are very appreciated as well as donations. We have a paypal (benkatierice@gmail.com) or http://www.gofundme.com/f3a2n0

Vision Therapy

Ansley had her first vision therapy this week with the Parent Infant Program with the Fl School for Deaf & Blind. We are blessed with the sweetest therapist. She just adores Ansley. This first few weeks are trying to establish a "baseline" on Ansley's vision. We know she seeks lights so thinking she sees lights. She doesn't track or reach/bat for toys as she can't see them. Our goals for vision therapy are to get her to try and focus, see shadows, etc. Of course ULTIMATE goal is for her to see everything! But that's up to God. 

Our therapist played with Ansley on the floor with different textured and light up/musical toys. Ansley keeps her eyes closed a lot so we are trying to give her something interesting (sounds/textures) so she will open her eyes. The more

She uses them *hopefully* the stronger she will get. :) our therapist is geting us alight box and were working on building a black box.

We will have therapy every week and work on new things. Will keep you posted! Thanks for the prayers and concerns!!! 

Want to help? Prayers are very appreciated as well as donations. We have a paypal (benkatierice@gmail.com) or http://www.gofundme.com/f3a2n0

Wow... & updates!

Wow is basically all I can say. We feel soooo humbled! Looked at our GOFUNDME account and you all have graciously donated $1600!!!! That has helped us pay off some bills we have been lagging on due to unexpectedly being a one income family. We have decided that for right now I will stay home with her as she needs one on one attention and we have numerous weekly appts and therapies will start soon. Has helped purchase necessities for Ansley, as well as a few "wants" for her. 

Thank you so much. Our hearts are overwhelmed. 

Also, an update!!! We met with our early steps coordinator yesterday and have an evaluation next week to see which therapies she qualifies for (speech, physical, occupational). Very excited to get her started. Should start vision therap within the next week or two!! We recently discovered a few musical apps that Ansley loves. She loves to lay on her tummy (on boppy) and listen to the music and see the bright screen of the iPad. It's so cute!!!!! She's also smiling and laughing a lot more. She cooes and talks to us which is seriously the sweetest sounds ever!!!!!!! 

Want to help? Our paypal is benkatierice@gmail.com or our gofundme address is http://www.gofundme.com/f3a2n0

Room tour!!!

We have been so BLESSED with so many handmedowns and gifts!!! Ansley's closet is never lacking :) She sure is fancy!!!!! We can't thank God enough for his many many blessings!!!!!! 

Our next steps

There are so many variables we are trying to figure out with her Adoption, Neuro issues and vision issues.

We should have our adoption finalized in November!!! Wooooohoooooo! Can't wait to go in front of that judge and here them say she is FOREVER ours! Pure bliss. 

For her Lissencephaly, we are kind of taking a "wait and see" approach with the severity of it. We are still trying to get a handle on the infantile spasms, they are tricky. So we are trying different dosages of steroids and different things. We have sever tests coming up for them. 

For vision, we start Vision therapy within the next week or two. Super excited. She absolutely loves her Christmas lights!! She "looks" for them now in certain areas! 

We have an evaluation with early steps in 2 weeks to get her set up with speech, physical and vocational therapy. 

She keeps momma and daddy busy but we've waited 6 years for her so we've got extra love and attention to give! God made her perfectly and put us together for a perfect reason. :)

We wanted to say thank you so much to those who have given. We were able to use that $ to catch up on bills that we were lagging on due to me unexpectedly not working :) we find different product ideas daily we could use for Ansley. These are what we currently we are trying to save to purchase for Ansley:

And just because, here's some Ansley is fancy loving 

To donate you may send via paypal to benkatierice@gmail.com (no fees)

Or send via gofundme http://www.gofundme.com/f3a2n0

Thank you so much! I pray many many blessings for your family! 

How you can help

Many are asking how you can help:

PRAYER!!!!! Specifically for:

Ansley's development (brain and eyes)

~ and all that goes with this

Feeding (suck/swallow)

Wisdom for doctors

Best care plan

Financial peace and wisdom as I'm currently not working in order to take care of fancy pants.

Financially:

We set up a paypal for those who would like to financially donate. All $ goes towards replacing my income and different items needed for Ansley's development. Benkatierice@gmail.com (no fees), or a gofundme at 

http://www.gofundme.com/f3a2n0

Thank you and SPARKLE ON! 

New diagnosis

Went to the ophthomologist today and they Doctors said Ansley has cortical vision impairment (which we guessed due to LISS) as well as optic nerve hypoplasia (main problem).

Optic nerve hypoplasia (ONH) is a congenital condition in which the optic nerve is underdeveloped (small) She has limited vision (she does see lights!), and we were referred to the Fl School for the Deaf&Blind for vision therapy. They aren't sure how much she will actually see as she grows. There currently is no treatment, just therapy to try and get nerve to strengthen. I left feeling discouraged and overwhelmed, got in the car and heard "all to Jesus I surrender". We are giving this ALL to HIM. Whatever the outcome he has a plan and purpose for Ansley's fancy life. 

This is the update I posted earlier on IG/FB. It is super scary. Along with the lissencephaly, microcephaly now dealing with vision impairment. Overwhelming is an understatement. A ton of questions going thru our heads. How will she develop? Are we equipped to handle this? Will she ever see us? So many questions. We do know that God is 100% in control. He has her life already planned out. He made NO mistake with her. She's perfect. His own image. :).

Please continue to pray. We need them! Please pray for her health. Please pray for her to grow and develop. Please pray for patience & guidance for us as we determine the best care plan for Ansley. We love you all and thank you for your prayers and love for our fancy girl!!! SPARKLE ON!

http://www.gofundme.com/f3a2n0 

Back to the gym

I'm headed back to the gym tomorrow morning (6:00 am, before Ben goes to work). I haven't worked out in 6 weeks!!! I'm hoping my body will readjust to working out quickly. I have gained 7 pounds since we got Ansley. It is what it is. Time to pick back up. Not starting crossfit quite yet, as we are very limited on funds, so trying a local gym by my house. I found a workout plan online for in the gym and tomorow is leg day!!! Here goes nothing. Ready to SPARKLE ON for my fancy Ansley :) 

Current stats:

Weight: 187

Pants size: 12

And then there were 3...

So Ben and I have been trying to start a family for 6 years. For the first 4 years, We started with infertility treatments and then quit. I was DONE. We were trying to find peace in it being just the two of us. "Me & you, just us two". Then we felt led to adopt. That was a PROCESS and after leaving the hospital empty handed (see our Adoption Story post), we were back to "me & you, just us two". It was a horrible, grim experience but we we're determined to NOT let it draw us apart. We sought The Lord, both individually and as a couple. We prayed for our marriage, we prayed for peace and most importantly we prayed for Ansley.

And then Ansley came!!!!!! It was so unexpected we didn't have time to think, much less "prepare". We were thrown in as parents. We have had to learn to adjust (we are still learning!!!) as parents and as husband and wife. It's not just us two. We now have this precious DEMANDING diva! It has been so sweet seeing our dreams come true as a family. There have also been obstacles learning to adjust to it not just being us two! Were both exhausted and that causes emotions to run crazy. We've had to learn we can't just go to dinner at 10 pm, we can't do crossfit every night/all night like we used to (at least for now), we've had to learn to adjust our lifestyle. 

With unexpected baby comes unexpected maternity leave. Learning to adjust to one income has been the hardest. We never fought about money, I won't say we fight now, but it's definitely more tense when it comes to our finances. 

All this being said, we wouldn't change this for the world. We are sooooo blessed by Ansley. She is so fancy and the love of our lives!!! We love this new lifestyle of being parents. It's exhausting, yes, I won't lie but it's AMAZING!!!! When she looks at you and smiles it lights up the whole room. Our hearts are full!!

Side note: several have emailed asking how they can make a monetary donation for Fancy girl. We've created a "gofundme", as I think that will be the easiest. http://link.email.dynect.net/link.php?H=qBOBTgXouCZdO5t3GY2KOjXlNMQdALHb%2FH7ZDewSQF3BeJQxow71fDz8PAw2hkIV291R3Bg03oj47t9SvmcIfGn94tIwd%2Ft7503p5qagdNQ%3D&G=21&R=http%3A%2F%2Fwww.gofundme.com%2Ff3a2n0&I=20140926211849.0AC7490DC63F%40mail6-02-ewr.dyndns.com&X=MHw3NzY2NjI6VEVNUElEXzQ5OzF8Nzc2NjYzOlFVRVVFSURfMTYyNDMyODcyOw%3D%3D

Thank you

Just wanted to say thank you so very very much for all the encouragement and prayers. And thank you for all the blessings! So sweet how many of you have sent little things for Ansley Claire. So so sweet. 

For those asking if they can donate our PayPal is benkatierice@gmail.com.

We appreciate it all and know and trust that The Lord provides ALL things. 

The Diagnosis

We noticed Lady A was super stiff when we got her. I mean stiff as a board and would "twitch" every once in a while. Thru working with her and loving her she has "loosened" up and becoming much more flexible. 

We were sitting on the couch with her one day and she started "twitching" for 4 minutes. Not violently shaking like you think when you think of seizures. But more of stiffening her whole body then relaxing, repeating that for 4 minutes. Very very scary. Took her to the ER and were able to get a MRI & EEG which diagnosed her with Lissencephaly and the EEG showed these "twitches" were infantile spasms (baby seizure). 

Lissencephaly, which literally means “smooth brain,” is a rare, gene-linked brain malformation characterized by the absence of normal convolutions (folds) in the cerebral cortex and an abnormally small head (microcephaly).  Lissencephaly is caused by defective neuronal migration during embryonic development,  the process in which nerve cells move from their place of origin to their permanent location within the cerebral cortex gray matter. Symptoms of the disorder may include unusual facial appearance, difficulty swallowing, failure to thrive, muscle spasms, seizures, and severe psychomotor retardation.

The spasms are due to the LISS. We are approaching a treatment for then with a high dosage of steroids. Hoping it keeps them at bay and then we will reassess as this is not a long term solution. 

We are now scheduling EarlySteps to come out and assess her development and figure out a plan for her, working with ophtomology to get her "lazy eye" working so baby girl can see and following up with Neuro.

It's scary. Scary to have a "special needs" child. Scared of the unknown. What if she doesn't develop past where she's at? What if she never walks? Never talks? 

All this being said, and all these fears, GOD MADE HER PERFECT. She is his perfect image. She is no mistake. There is nothing "wrong" with her. She is fearfully and wonderfully made and we are blessed to be her parents. We are blessed that God put us together to be a family and honor him. Whatever we have to face we know that God has this already mapped out, he has a special plan for her life. 

Adopting Lady A

We were matched with a BirthMom in September of 2013.  We went thru her entire pregnancy with her and met with her. She seemed to be totally "in it" and seemed dissassociated with the baby (in her belly). Telling us it was "our baby", yada yada. We left feeling very optimistic. Then the day came! The day A was being born!!! We couldn't be more excited. We packed everything up and went to the hospitals, our families waited with us while BM was having c section. We waited and waited and waited. Then the nurse came out and grabbed our adoption specialist and we knew something was wrong. Our AS came up to us and told us our BM has changed her mind. I fell to the floor. My husband and I, along with our families just sobbed. Was the worst moment of my life. We left and tried to grieve. The 4 months following that were awful. We tried to grieve and move on but we couldn't. We packed up the nursery and closed the door.

Early August we got a call saying our BM has changed her mind, then she started asking for $$, which we weren't comfortable with as we went thru the pregnancy with her and left with empty hearts. At this point we literally gave it ALL to The Lord. We were praying for contenment for the two of us.
Then two weeks later we got a call from our attorney saying "BM is on the way to sign papers and bringing baby!", 2 hours later we got another call "BM signed papers, come get your baby!!!!" I fell over. I jumped out of the shower, called my husband and said "I'm going to get our baby!". It was a whirlwind of emotions and our lives have been changed ever since!
It's so funny Ben went to work that morning and that afternoon had a 4 month old baby! We are so in love with our fancy Ansley :)