Hailey can roll!

Hailey is gunna be a gymnast one day. She spends way too much time at the Tae Kwon Doe Studio and those kids!

Hailey and her silly personality

As Hailey is growing up everyday her personality is showing more and more. Some days I see myself in her, and others I see Shane. I'm amazed at how fast she is learning things and understanding. She is so proud of herself for being able to point at every body part (even her elbow and knees) that she claps and asks me for a "five".

We were walking through the mall the other day down in Mesa before her doctor appointment with her Pulmonologist, I was explaining to her that we don't talk to strangers or run up to random children and say hi. She responds with her normal "okay" and so we keep walking. The next thing I know, we are passing these nice men working at one of the booths and she lets go of my hand and runs up to them and shouts "BYE MOM" then proceeds to have a conversation with these men, they were cracking up so hard.

She has also started playing with a toy cell phone that I got her a few months ago, and while we were driving she was in her car seat, phone up to her ear (even the right way!) and was just blabbing away, I made the mistake of asking "who are you talking too? Did you call Daddy?" She gave me the grumpiest look and responds "Hush Mom! Phone!" So apparently when I'm on the phone with David, or doctors, or work (just about anyone) its cool for her to come up to me and repeat "Mom, mom, mommy" until I respond. But if I happen to interrupt her little fake conversation, the world must stop on its axis.

She is going to be just like her dad when it comes to reading. She LOVES books. Any time we go to walmart she asks for a new book, which, if I can splurge a little, I usually give in and go on a hunt for a new interesting book for her. She will sit there and look at books the entire trip to phx and back, while in the dr waiting room and just about any where.

She has to be sedated again either this month or next month depending on what her Neurologist decides because they are looking into a brain abnormality that causes part of the back of the brain to push on a certain nerve which causes the chronic cough, aspirating and just about every symptom that she has. They have to do an MRI on her, and she is too little to stay still during the test. The major scary part is, its only able to be corrected with surgery, on the head. Another major surgery for mommy and Hailey to go through alone. I had them run the sweat test again, just to double check the numbers. The first test came out positive, the second negative. We did it again just in case, and found it to be negative thank goodness. The number is suppose to be at 40, her's where at 19 on her right arm, and 20 on the left. We also see the Gastro doctor on the 1st, to repeat her Swallow Test that she hasn't had since she turned 1. So I can see that I am going to need to save up some money from my next check, and buy a few new books to keep her calm.

On good news, according to the charts at the lung dr, she has gained 2 pounds and grew an entire inch since her last visit, leaving her at 23 pounds even, and 32 inches!

Updates on Test's

So Hailey has had a few different blood test's done to check all sorts of levels in her body, most of the test's came back higher then the doctor wanted to see but she made it clear that she should still be okay, but one test ( I can't remember the name of test for the life of me) was so high off the charts, that even for an adult it would be bad. She has never seen it be so high in a toddler that she doesn't know what to do or think, so she sent off all the results to her specialists, her pulmonary dr, her gastroenterologist, her dermatologist, and her neurologist. I'm still waiting to hear back to what they think it could possibly be. We have her Florid Sweat Test finally coming up next week, the last little test to see if its CF or not. All the other test's and symptoms are pointing it to CF so I have to wait and find out. I am just so thankful that I have David's mom by my side during all of this, the moment she found out that Hailey had been so sick she has been helping me through it, telling me what to expect next and how to try to stay calm. She has been dealing with CF with her daughter since she was 3 months old, and Kelsea is now 12 and fighting and strong as ever. Ever since Hailey has her first seizure back in February, she has had countless more in her sleep, and one while she was awake. When the doctor told me that day that she could of lost the fight that day, my heart stops every time she starts seizing, I can't handle having another doctor say that she might not make it through this one, and that I need to "prepare" myself for the worst. Hearing that as a mother was the hardest thing in the world. I cherish every moment that I am with her, and take full advantage of seeing her every day as she grows up. Her doctors are glad to see that she is developing well, and is very ahead in some parts for her age. She loves her big girl panties, and hates being in her diapers now. She still has accidents but she knows when to run to the potty. It's coming along great! I have also come to realize that my little artist is right handed, she does everything with her right hand. She is getting so big, and I love her very very much. I want to keep her around as long as possible. So whatever illness this is that is causing her to be so sick, and to not let her body get ride of the pneumonia better pack its bags and leave, because I won't stop until she is healthy.

My 1st Vacation

I had the chance to take off work for a little over a week and go on my first vacation to get away from everything. I needed a break from the stress of working 14 hour days to coming home to a sick child that I know every doctor appointment we have brings me nothing but bad news. I needed a break from the heartache of seeing the doctor's shaking their heads as I ask what can we do to fix all this pain. I had been wanting to see my best friend, who I am now with, for a long time, ever since he came home on R&R from Afghanistan last September. And I had also been wanting to meet my cousin Hillary for the first time, which we had been in contact with each other since 2003, while her and her husband were also deployed out in Afghanistan. And just my luck they are both stationed at the same exact post. Just all the way across the USA in North Carolina. David's mom, who has been helping me daily with the health issues with Hailey, keeping me encouraged and telling me to call her the moment I found out any results to any tests (her daughter has CF as well, and she understands what I am going through) has been telling me for weeks into months the moment she found out her son and I started talking again that I needed to fly out and see him. I wasn't sure why, but I knew in my heart that I should and that I wanted to. So after I paid my bills, spoiled my daughter and took care of the necessities I bought a plane ticket and rented a room at a hotel for 8 days in Spring Lake North Carolina. Which ended up being right outside of the Honeycutt Gate of the post, so I was never more then five minutes from the post. What my dear boyfriend and cousin didn't tell me right away, was that the location of my hotel and the hotel its self was the center of drug traffic ring. So out of the 8 days I paid for, I really only stayed there 2 nights, and never alone. You would think a army post would be safe and secure right?? Wrong, they have had a spree of random drive by shootings over the past like 3 months resulting in 20 murders, which the last night there, around 0115 as I laid in the bed I began to hear shooting outside the Barrack. Needless to say I had a blast, starting from a very long plane ride with connections, then coming seconds away from getting arrested my first night there, too setting off the fire alarm in his 5 story building of barracks which lasted 4 days. Too meeting my cousin who is a Lt CL. in the Army and having a blast. The week I was there it was a trip down memory lane for David and I. We talked about all the fun and not so fun that we had in middle school together and High School, too all the people we dated and mistakes we made. There was never a dull moment from when I had to play nurse and take care of the Staff Infection on his face, to meeting one of his NCO's in my Pj's. We are strong for each other, we know what each other is going through, for we have the same problems in a way right now. Now to just wait till June till I can see him again.

Update's

So some new things have happened with Hailey lately. First off she is a year and a half old now, is only missing about 4 more teeth (she is working on 2 at a time now on those poor molars). She LOVES coloring, on just about everything. She still loves her routine in the morning of getting up, watching Mickey Mouse Club House (that's a must if we want a good day), Chuggington, and Handy Manny. On the days I have off work (which lately is maybe once every two weeks) I take her too the park in the morning and we run around for about a good hour or two before we come home and read some books (which is also her favorite! I can leave the T.V. off ALL day as long as she has a book or two to read). Her hair is still blond and getting long and curly, I think its about time for a trim on parts of her bangs, and her eyes are still very much blue.

She has learned how to jump, and she loves counting up to three with me (2 seems to be her favorite number). Her favorite toy right now is her little magnetized drawing board things. She sleeps with it, eats with it, takes it in the car, and tries against mommies wishes to take it in the bath with her. She will sit there for hours just drawing and erasing, and sometimes has mommy draw while she erases, which is a perfect time for us to work on our letters :-). She has also become very sassy, she likes to tell me no, or that everything is her's. If I am on the phone, she shouts BYE in a very loud tone, letting David or whoever else on the other end know, that my speaking time is done. She has also started to tell me to "come on" or "now mom" her "pwease" is getting better, but her "sock" has changed into a rather naughty word now.


On the medical side, we just had a visit recently with her Pulmonary doctor again down in Phoenix. Dr. Thomas has been wonderful with us, its amazing. He had even shown up in the hospital at 7 am the day following her seizure (mommy was not fully awake or prepared for that visit). He has decided to take my mini off of the Pulmacort (the inhaled steroid with her nebulizer machine) and she is now using an adult inhaler with a chamber and mask. Two puffs a day of the Flovent (a stronger steroid), which takes 30 seconds to do, compared to 10 minutes. She also has three different test's coming up very very soon. We have our Sweat Test in the scheduling process right now, awaiting the call very anxtiously from Phoenix Children Hospital on that. Dr. Thomas warned me that to get an accurate reading on such a young patient, we may have to do the test as many to as a few times as 5 or more times. Its not invasive so I am okay with it so far. The next test he has ordered is a Immune Panel to see what her numbers are at. Cystic Fibrosis is still their #1 "choice" on the disease list right now, but the second to him is an Immune problem, where she just wont ever get a "100%" better from being sick. And last but not least the third test is to test her Pancreatic Eleastise. He said if the numbers are off on that, it will go along with the CF, but if she tests neg. for CF but the numbers are bad with her pancreas then we have a whole other road to travel. Now that is just from one doctor keep in mind. We still have to see her GI doctor, and now a Neuro Specialist in April. The GI wants to set up another Barium Swallow test on her, to see why and how much she is still aspirating. We have her 18 month check up this month, but dear old mom is going to be out of town (much more like state) so I have to reschedule that one. During her Bronch and her Upper GI, they did an allergy panel on her, and she tested positive for dairy products and nut allergy. So we are back on the Soy diet, of no cheese, nothing that has TOUCHED cheese, no ice cream, no peanut butter, no nutella, nothing. Makes cooking for the mini very tough. Her and I live off of a lot of Grilled Chicken, Rice, Fruits and Veggies. Right now her weight is still only 21 pounds, and she is 32 inches long. Lets just say the little girl owns more belts for her pants then dear old mom. Her exczma has gotten better with the change of diet, which is nice, but she has a new patch on her leg with the little bumps.

Nothing much more to update on for as far as I can think, for its only 0300 so my brain is not completely functioning yet.

Growing

My little girl is growing up so fast. She is starting to use 2-3 word sentences, I work with her every day on it. She says "Love you Mommy" every night before bed, and recently sense we started using pull ups she uses her big girl potty 3-4 times a day, and is dry during nap times and even through out the night. The plan is if it keeps going this well to have her out of diapers by her 2nd birthday! Which I already know the theme for her 2nd birthday party! So excited! She is also doing great on her bike! She sits on it every day and has started to realize what the petals are meant for, I will have to post video's of it soon! My baby is growing up...

What to Do, What to Do

So in the past week Hailey has gone under, a Upper Gi, a Bronco, a 104 fever, two seizures, and many many tests. Dr's are having her tested for CF as soon as they can get me scheduled in at the PCH. The chances of her having the illness is very very high at the moment, no cure, no stopping it. Just treating the symptoms and keeping her comfortable. Her life expectancy would also be shorted as I am told. She has had breathing problems since birth, and a chronic case of pneumonia in her lungs. We also found out during her procedures ( they did an allergy panel) that she still has that allergy to Milk, so that means no more milk, cheese, yogurt, ice cream, nothing with Dairy it in. Dr. Ufberg says that they are deadly allergic to it when the number of cells is at 15, her's are at 12. She also has an allergy to Peanuts. We are just now waiting on the biopsy's of the fatty lipids that they found in her lungs, and to find out what the bacteria is that is growing in her lungs, and what we can do to treat it. I keep thinking to myself if I did something during my pregnancy that caused all this, they keep telling me that I did nothing wrong. It's just something that the parents have. Her father needs to be tested for it, and many other things at the request of her doctors, but since he has no interest in showing up for her appointments, or getting tested for anything it makes my nights harder. I have never been as scared as I was when Hailey started seizing in my arms and stopped breathing, and the carelessness in her fathers voice when I called him crying from the ambulance. I thought I was going to loose my daughter that day, and the paramedics were preparing me for that. I thought to myself, how am I suppose to handle this?? I am not ready to think about funeral cost's and preparations for my 16 month old daughter, no mother should have to think about that, ever. Those five men that helped save my daughter, and cared for her that afternoon until he got to the hospital were amazing. I was crying, and shaking as Hailey laid lifeless in my arms, not looking at me, not responding to them poking her feet with pins, her oxygen level was down in the 80's and she was gray. She is doing much better today, but as the doctor put it, she has a ticking time bomb in her, that at any moment could go off, and she could seize again, for a munch longer time, with much worse out comes, and that I need to be prepared for that. I am not allowed to let her temperature get above 99 ever. I am to follow strict medications every day, and pray that while I am away at work, that she is okay. I am doing everything that I possibly can do as a mother, by myself. Some days I just wish her father could understand how serious this is, and try to see her and be by her side through all of this. No child should ever endure everything she has had to go through so far. Many are worse off and with worse conditions, but seeing my daughter stop breathing in front of me was the most horrible feeling I have ever felt.

3 months and counting

3 months and counting and I will offically be a Bailey. April 16th can't come any sooner...wedding, then moving, and a whole new life....2011 is being so good to me.

My Cutie Pie

My daughter has grown up so much recently. She says more words like "cheese" every time she see's a camera, or scream's "weeeeee" when I put her in the shopping cart or in Zachary's truck. She speaks so clearly know its amazing, she loves her "Uncle Tristin" and Grandam Missy, and of course Daddy's dog Jacen. That silly dog loves her so much, poor puppy gets beat up every time she see's him. She loves wrestling with her daddy, have yet to catch it on camera though, she always knows when I am recording her silly butt. Soon I will though.

There is my little princess at 15 months old on her lunch date with Daddy, Grandma Missy, Grandpa Bob and a few others while Mommy worked. Her pretty blue eye's are gonna be a problem for Mommy and Daddy as she get's older. Hopefully I find a good school for her after we re-locate and such.