Bentlee NicKelle-3 months gone by

So it has been 3, almost 4 months since my last update. Life in the Ence household has been beyond crazy!! For one, we moved, Bentlee started physical therepy sessions at home, She turned one, Race started 3rd grade, which he loves! His favorite part is being able to ride the bus in the mornings and home after school. His teacher, Mrs. Twitchell has even said he is one of the best readers in the class! He is doing awesome!  And course, Gooseberry! DJ and I felt very fortunate and grateful to be able to spend the evening at Gooseberry with him, and being able to relive the memories of our own childhood. I told DJ that it was soo much funner going to Gooseberry as a parent than it was asther a third grader. It was soo fun seeing the reactions of 'Annie Bangs' and being able to hear the story of her after many years.She is still as scary as ever!! :) Being able to share the memory with Race is something that we will never forget. We loved it, he is such a great kid. Race is also loving scouts, reading stories to his sister, watching movies with her, and of course being a boy! He is turning 9 in November!! Happy Birthday bud!

And this is the part where I am going to apologize in advance for my grammar, and punctuation. Improper use of grammar and punctuation is my BiGGEST pet peeve! But, please understand that the rest of this post is going to be typing as I think,and those things are not going to be my priority.

The last post I made was right after we had come home from from PCMC back in June. I cannot  begin to tell you how well Bentlee has been doing since coming home. The doctors got her diet figured out, and she has really been doing well since getting home.

Bentlee is now 14 months old, weighs a little bit over 15 pounds, and is 26 inches tall. She has an AWESOME physical therapist who is sincerely dedicated to helping her, and who I really believe has helped her progress like she has. His name is Kelly and he is really great.

Yesterday, (10/23/12) Bentlee had a sedated Echo done. This was her third one. The last one she had was 5 months ago and during that one they discovered that he SVAS was peaking at 44%. Yesterday, the echo was showing that it was now peaking at 64%. A 20% increase in 5 months, which is pretty rapid for such a tiny girl. The Cardioligists said that if everyone was based off of a number that, the number in which the open heart is required is 70%. So Bentlee is very closely knocking on the door. Right now, the Cardioligist feel like the symptoms which I notice throughout the day are not consistent enough to justify doing the surgery immediatly. The doctors admit to dragging their feet as much as possible because the older the child gets, the easier and more effecient the surgery goes.

We have some really great cardioligists, which I do not doubt one bit. Although the open heart surgery is extremely invasive, we are told that the success rate is through the roof. During our consultations the doctors have explained the best they can how the procedure will happen. Obviously Bentlee with be put to sleep, the incision on the chest and breast plate will be made, and then the heart bypass machine will be put into place. For those of you who are unsure what the bypass machine does I will explain the best I can. Bentlee's heart will actually be stopped, and taken out, therefore making it much easier and more effiecient for the doctors to repair the valves in the heart.  The bypass machine will make it so Bentlee will be able to function without her heart pumping. Pretty scary!

We are being told that the actually surgery can last up to 8 hours. The recovery can be anywhere from 6 to 14 days in the hospital. DJ and I know our little girl is so strong, and such a fighter that it wont be 14 days, but obviously that is what we have to prepare oursleves for.

We cant begin to express how grateful we are to everyone and all of the amazing thoughts and comments we have recieved. It may not seem like much to you, but these things really mean so much to us, and they really do keep us going on with a positive attitude. So thank you!

We dont have an actual date for the surgery yet, all we know is it will most likely be within the next 2-3 months. DJ and I really do appreciate all of your kind thoughts,and words of encourgment for our baby girl. She truly is a fighter, and the positive encouragment helps to remind DJ and I just how lucky we are to have her.

Again, our family thanks everyone sincerely. I speak for all of us when I say we dont always have the time to reply to each of your calls, texts, and emails. We really are appreciative and will always try and keep everyone updated as we can.

DJ and I, as well as our family appreciates all of you and your kind word. Thank you so much!

- Kadie