Fancy turns ONE!!!!

Last night we celebrated our Ansley turning ONE!!! She will be 1 on 3/25. It is so so crazy that last year we were planning on our sweet baby girls arrival!! It definitely didn't go as planned but that's all and over with :) She is where she needs to be now! We have had her 8 months and it has been the GREATEST 8months EVER!!! We can't imagine life without her. What did we do before her?! :)

For Ansley's party we wanted to do something "low key" in the backyard. Well that didn't work. The more we planned, the more excited I got and it grew and grew :) It turned out PERFECT. The décor, weather and all our friends made it perfect. We wanted to light up the backyard, since Ansley responds so greatly with lights. So we got to planning, and planning, and planning. Thank goodness for Pinterest. HOLLA! Here are a few photos:

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Thanks and God Bless,

Katie Rice

Benkatierice@gmail.com

 

 

Adoption update

UPDATE: this has been postponed. Hopefully Monday 3/23. 

It's TPR Week for BirthDad (Wednesday)!!!! Yipee!!!

So nice to have things finally feel like they are moving! 

Once BD is TPR'd we then should have a Finalization Hearing scheduled within 30 days. Soonest calendar opening on Judge's schedule. We can't believe her GOTCHA DAY is coming up!!! Feels like it would NEVER get here!!!!!!!

Please pray all goes well and there are no more delays or setbacks! We are so so excited that this day is finally coming!!! Ansley will be OFFICIALLY ours! eek! She has such a special place in our hearts, we can't imagine loving anyone anymore than we love her. Who knew our hearts could hold so much love?! Thank you for all the prayers, love and support these last few months!!! Even before Ansley was placed, when we thought we lost her. That was the HARDEST time of our lives. And we could NOT have gotten thru it without the love and support of you all. Thank you for lifting us to the Heavenly Father. Thank you for loving and encouraging us. Thank you for supporting us.

 

Please continue to pray for Ansleys health. We have quite a battle ahead of us but we KNOW we will make it thru. She is such a punkin doodle and just so perfect. Just love her so.

GoShoutLove and updates

Thank you all for the LOVE and SUPPORT on the GoShoutLove Campaign!! Holy Moly!!! In 8 days, they sold 250 shirts (Halfway to their goal of 500)!!!! You all AMAZE us!!! We feel so loved and BLESSED! Thank you so so much. If you would like more info on GoShoutLove(Order shirts, participate in auction or read stories of other amazing families), visit www.GoShoutLove.com. They are a fabulous Organization and feature a sweet family every single month to help raise funds and spread awareness about the disease or diagnoses the sweet little kiddos face. 

 

If you are following our story on IG (GetFitKatie) or FB(www.facebook.com/AnsleyisFancy), you have seen that last week we added a diagnosis of Cerebral Palsy to Ansley's"list". While it doesn't add anything "new" for her it does help us know a little (teeny) bit more about her prognosis. Helps us see that she most definitely will have challenges, both neurologically and developmentally. BUT GOD. It's amazing to see how FAR she has come in the almost 7 months that we've had our sweet Ansley Claire. When we first were placed with her, she was "stiff as a board" and so so skinny. We didn't see it then. All we saw was our sweet baby girl finally home with us. But to see her "loosen" gain mobility, gain weight, become healthy, feel loved, feel secure, it just brings the biggest smile to our faces. We couldn't be more proud of her. She is a FIGHTER. She has overcome so much already of what people told us she wouldn't be able to. We do believe she will do great things with her life, in her OWN time. BUT GOD. I tell myself that ALL the time. Whenever we feel down, worried, sad that reminder pops up BUT GOD. Thank you God for allowing us to come to you for ALL things, big and small. Thank you for loving us enough to send us this precious girl.

 

Here's a "snipet" of Ansley's diagnosis for new followers:

Lissencephaly - which literally means smooth brain, is a rare brain formation disorder caused by defective neuronal migration during the 12th to 24th weeks of gestation resulting in a lack of development of brain folds and grooves.  The prognosis for children with lissencephaly varies depending on the malformation. Many individuals remain in a 3-5 month developmental level, while others may appear to have near normal intelligence and development.

Microcephaly -a rare neurological condition in which an infant's head is significantly smaller than the heads of other children of the same age and sex. Sometimes detected at birth, microcephaly usually is the result of the brain developing abnormally in the womb or not growing as it should after birth.

Poly Micro Gyria -Polymicrogyria is a condition characterized by abnormal development of the brain before birth. The surface of the brain normally has many ridges or folds, . In people with polymicrogyria, the brain develops too many folds, and the folds are unusually small. The name of this condition literally means too many (poly-) small (micro-) folds (-gyria) in the surface of the brain. ****Ansley has the PMG small folds under the smooth layers of her brain. Little Diva has to have a mixture of both, which is very rare.***

Cerebral Palsy - Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by an insult to the immature, developing brain, most often before birth.

Cortical Vision Impairment - is a form of visual impairmentthat is caused by a brain problem rather than an eye problem

Optic Nerve Hypoplasia - Optic Nerve Hypoplasia (ONH) is the under-development or absence of the optic nerve combined with possible brain and endocrine abnormalities.

 

ADOPTION UPDATE: BirthDad TPR is set for next week so hopefully finalization will be in MARCH!!!! Please continue to pray. 

Thank you so much for loving our sweet Ansley Claire. She is a GEM and sparkles every single day.

 

SPARKLE ON!!!!!!

 

 

For those wanting to donate, we would love for you to be a part of the GoShoutLove Campaign, or have a GoFundMeAccount at: http://www.gofundme.com/f3a2n0

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