BUSY BUSY BUSY!!!

Many of you know that I have started a new journey with Kyst By Everlee. Please take a look at the site if you have the time....www.kystbyeverlee.com. I am so excited to have had the chance to to this , it allows me to do all the things I love and most importantly it allows be to give to the spina bifida community, both in awareness and donations. Spread the word!!!

Our Update with Everlee is what I expected!!!! She is a ROCKSTAR! I have said it all along. She is working her butt off during therapy, which she has 5 times a week. She is rolling over and just recently started sitting by herself...I plan on putting video up here as soon as I know how!!!! Her Ortho is really impressed with her progress and still sees no need for bracing of any kind. The fact that she is going to walk it so amazing but if she can do it with no assistance, I will just be floored!:) We continue to work with her on the urology side, we continue to catherize her and we recently changed up her meds which should help avoid any bladder and/or kidney damage. That is one thing that is always on my mind, well that and the Shunt. Which reminds me....Sammy the Shunt has been working for 4 months now...isn't that just awesome??? We think so. Everlee does had an appointment with an opthamologist to check on one of her eyes that seems to be turned inward...we will have to wait to her about that. She is turning into a bit of a little piggy!!!! Almost 18lbs, wow! But we worked hard for those lbs:).

As usual, I hope you all are doing well....next time I will have video and pics for you. Hope you enjoyed your labor day!

A quick hello!

Hope everyone is doing well. We are!!! Scott is sadley in DC but we are joining him this weekend!!! yea!!! We have been so lucky to have him staying home a lot more this year, it has been so good for our family. Although now his leaving is a lot harder, especially for our Aubree. She tells me everday that she is ready to pick him up at the airport! My little girl is turning into a total "Daddy's Girl". She is also turning into a great little helper. I have lately tried to avoid taking her to a lot of Everlee's appointments but today she was a big help. We had two therapy appointments today and I was so happy to see how good Aubree was. It is pretty rough for a 3yo to sit in a room filled with toys and stay off them but she did. All she wanted to do was help with Everlee. It was precious. Everlee is doing great also. We continue with therapy and we have few key appointments coming up. I will update you with her progress after those appointments.

Our Everlee is a such a big girl!

I finally have access to a computer again, ugh!

Our little nugget is not so little these days. 15lbs and 8oz. and 26 inches long at 5 1/2 months!!!!
I am so proud of my chunky monkey. We have been keeping busy with doctor appointments as usual but everything has been pretty good. The best was our last appointment with the orthopaedic surgeon, he says she is using all of her muscles and that therapy will be the best thing for her. He expects her to be a walker!!!! I already figured that but it is so nice to hear it come from a professional!:) We have hired a private physical therapist in addition to what we are doing with CCS (the state program). She will now have three hours of physical therapy, two hours of occupational therapy and one hour of developemental therapy on a weekly basis. The first year is the most crucial from what I have been told so we are trying everything. Everlee is now rolling over and can hold herself for sometime in the sitting position, all of this is just awesome!!!! She is smiling like crazy and just recently started giggling. She is an awesome sleeper, THANK YOU!!!!! She does seem to have some lack of strength in her arms which might be caused by her Arnold Chiari Malformation, this has also given her a little trouble with gagging. These are all things we can work thru and she will get stronger. Her biggest problems that she will have to face are with the lack of bladder and bowel control. We met with her Gastroenterologist (I know another "ology") and he seems to think that things aren't quite working down there so we will start with testing and figure out the best solution for her. She is still being tested for various blood disorders because of her anemia, not quite sure what caused her to need a blood transfusion yet but we will get that figured out.
Our little girls are both growing way too fast! Aubree is just getting funnier each day and she knows it. Everlee already idolizes her big sis, I just love it. Aubree will get started with preschool in the fall. Oh boy!!! I will keep you updated on everything here. Thank you as always to everyone that has given us so much support thru all of this. We love you all.

Oh yea...notice the ads below and please click on them to check them out....we get get paid a little something and every bit helps these days!!!! :) Luv ya!!!!

Home Again and LUVIN' it!!!!

So here I am sitting on MY couch in MY family room, drinking MY glass of wine! Yea, we are home and I am in MY home with MY whole family!!!:) Okay did I get the point across??? Well, here we go again, Everlee was back to her old tricks- I think she is trying to get her frequent flyer card filled. Luckily my sister gave you all an update already but I here I am to give you bit more info.
It was day 17 since she had been out of the hospital for her second "vacation"and I started to see a bit of fussiness unlike your typical "baby stuff". So we called Dr. Loudon, her neurosurgeon, and they had us come that thursday. I knew where we were headed so I stopped feeding her at 7am in case she would need to go into surgey that day. Sure enough we saw Dr. Loudon, he tapped her shunt to have her CSF tested. No matter what the test results were he knew the shunt was not "tapping" properly so we would be going back into surgery for surgery #7. We dropped Aubree off with off with my mom (while rescheduling her birthday party) and headed back to CHOC. As most of these hospital experiences are, everything went SO fast. When we got back to CHOC we were admitted and went directly to SHORT STAY (basically this is where you go when you are headed to surgery). We were waiting for surgery but got pushed back because of an emergency, that both Dr. Loudon and his partner Dr. Mahonen would have to part of. Things got a little stressful because Everlee hadn't eaten in HOURS, how do you tell your baby that they can't eat? But then I saw the family of our docs emergency praying in the waiting room and realized we could handle our"stress". Then Myrlee, Dr. Loudon's PA, gave us some news we weren't expecting. Everlee's white blood count was in the thousands, so they feared infection. At that point we found out that she would not be getting her shunt back, but instead she would get her new friend, the EVD (External Ventricular Drain). Oh wasn't that a blast!!! Scott liked to describe it as the beer bong that was attached to our daughters head. Yea, how WT do we sound????:) Anyway, this drain had to remain level at all times to keep the proper level of CSF in her brain. We spent a week with this contraption and antibiotics to kill off her infection.
Day 7 in the hospital she was able to go back in for her new shunt, I never thought I would miss her shunt....but boy did I! Surgery went okay, there was some issue about her ventricules being too small because an employee of the hosptial didn't close off her EVD during transport, you can imagine I was not the nicest of mommies when this was discovered, but Dr. Loudon did what he does best and gave Everlee her new little accessory!:)
I didn't know what it was right away but recovery wasn't easy for her this time around, that was hard to watch. Unfortunetly, it didn't get better right away. She had to be on morphine for the severe pain she was in. Then her fever started and they feared her infection had returned so they started her on two antibiotics. Then we had the morning I thought I might loose my baby girl. Everything seemed to just be "typical" of what to expect from everything I have learned. But when I looked at my pale baby girl with no reaction to my voice and her eyes that kept rolling back in head, I thought for a moment that we weren't going to get her back. I fear everyday since that I will see her like that again. Luckily this state didn't last long, they discovered her hemoglobin count was way too low and she was given a blood transfusion. I swear to you, I watched my littled girl come back to life, it was amazing. So to all of you that don't, DONTATE BLOOD!!! Of course, we are now referred to a hemotologist because there was no reason for the actual blood loss and then referred to a GI Specialist because of some trace blood found in her stool. But who cares, we have a few more docs to see but my baby girl is now home and happy!
I do have to say this "trip" was a learning experience. During this time I had the pleasure of meeting a family that was Dr. Loudons earlier "emergency". This little boy was twelve years old and fighting complications due to his leukemia treatment. That is right, he wasn't even fighting his actually ailment yet, he first had to survive the multiple blood clots found his brain due to his treatment before her could even think about fighting his leukemia. This family has been in the hospital for the last 7 months. All 14 days we were there, that family was there just waiting for him to come out of his chemically induced coma. They were the most inspirational people I have ever met and everything that they had or have to go through put a lot of things in perspective for me. Each member of that family Mother, Father, 3 sons... told me that they truly believed it was their positive attitudes and their constant just"being there" that got their little guy through it all. I think of him daily I pray that he continues to fight.
I knew our daughter would be a fighter and that she would have some trials and speedbumps to overcome....... but we are so blessed and lucky to have what we have. Like I have said so many time before, Everlee Ann is a ROCKSTAR!!! Of course so is her sister, Aubree has been so good about putting off her bday party- that is such a big deal for a three year old. Of course we will make it up to her but just having her sister home makes up for all of us!!!!!
Love you all and thanks again for the support!!!!

Almost 2 weeks...whew!

 

Here I am (Kris) again blogging for Karlee; she is having difficulty with her computer for some unknown reason.  

Karlee has been by her daughter's side in the hospital for almost 2 weeks now!  Everlee went in due to an infection.  She seemed to be in the clear and was scheduled to come home last Saturday.  I guess Everlee must really love being in the hospital, because that darn infection came right back.

This misfortune doesn't seem to bring the Leyva family down though; they are warriors!  Karlee & Scott always have positive attitudes and take these moments in stride.  Everlee has been the "Warrior Princess" fighting each  battle that reaches her.  Aubree has been remarkably good without having her full-time mommy, daddy, and sissy with her.  Everyone has been taking turns caring for Aubree...I'm sure she will be spoiled with love from mommy, daddy, and Everlee soon!  Daddy bought her a turtle to keep her company...Kruiz really loves it too (thanks Scott)!

Everlee has had now 8 brain surgeries and continues to strive.  A new challenge has been revealed; severe enemia.  The Dr. was please to announce that it was not due to internal bleeding- meaning it's not his doing but now she has another medical issue and needs to see a hematologist.  Just one more battle for this family of warriors to challenge!

Karlee, Scott, Everlee & Aubree are so thankful to everyone for your support!  Please keep them in your prayers!

Our New Baby!

As many of you know little Everlee has been keeping us very busy. But it has been worth it when I look at the baby she has become in the last week. With all of the fun appointments with her specialists and therapists she also ended up in the hospital for week with two more shunt revisions. During this time we also found out about her neurogenic bladder and that we would have to start cathing her to protect her kidneys. Not what we expected but we are learning that this is just our new way of life. The most amazing part is to see what a happy baby she is. I thought we had a bit of a fuss butt, which I felt she was entitled to be, but I was so wrong. Now that we have a properly working shunt we have ourselves a happy and content angel. It is so nice to see her so content and comfortable. She now is connecting with her eyes, giving us a social smile and she is recognizing my voice. Developmentally she is right on which is such a gift. I really can't express how happy were are, these little milestones that she hits keep the marathon weeks of appointments so worth it. I think the strongest of us all has been big sister, Aubree. She has been so good with all the appointments and the hospital visits. I can't believe the patience and maturity she has shown, such a big girl! I will try to be better with the updates, as always thank you for your support and keep please keep our little ones in your prayers.

One Month Old!!!

Well, having little Everlee home has been well....like having any other newborn, our newborn just has a crazy social calendar! This has been our first week that not been flooded with doctor appointments and then we start again next week. She is growing so fast, her last peditrician appointment she had gone from 6'5 to 7'6 lbs in a week! I am guessing she will be hitting 8 lbs in no time. She is starting to make eye contact and is practicing her smile....and yes- she has a dimple! OHHHH....so cute.
As far as all of the medical stuff....well, things seem to be doing pretty good. We meet with her urologist on Monday and hopefully will find out more on the extent of the nerve damage controlling her bladder & bowel function. Crossing our fingers there, she could really use a little relief when it comes to poopy diapers...15 a day it not so fun!:) We will also be having our first Spina Bifida Clinic next Thursday. The clinic is where she meets with all of her specialists, Neuro, Ortho, Uro, Cardio....are there anymore o's???? I am looking forward to meeting with the orthopedic surgeon, hopefully we can get a better idea of the nerve damage in her little(okay not so little) feet. Her feet right now are still aiming towards her shins she seems to have trouble pushing them downwards, although most of the docs seem to think she has no feeling in the bottom of her feet- I am still hopeful. She seems to respond when I tickle them- I think she is just moody!:)
So that is the lowdown so far. Our little eater continues to amaze us daily- she is so much more than I could have imagined and has already added so much to our family. She is a little fighter and I can tell is not going to stand by and let anyone give her limitations. We thank you all for your support, I know I am repeated myself but really it has meant SO much to us. We really could not have survived this time in our lives without all the support & love of our family & friends. We are truly blessed.