Tuesday, March 29, 2011

Our Life

I am overwhelmed with the love and support from all of our family and friends that we have received on behalf of Hailee. These past few weeks have thankfully become much easier than I thought it would be. I am starting to get the hang of grocery shopping...just going around the perimeter of the store, since that is all we can buy, but thats okay! Its all such healthy foods for us! Also, I am sooo excited to try out recipes from the new cookbooks my Mom bought me!
Anyways, we met with the GI specialist last Wednesday and she asked me a gazillion questions. She definitely was not the warm and fuzzy make the Mommy feel better type of doctor, but that's okay. She was very thorough. We talked alot about Celiac Disease, and she also told me that just because Hailee's initial blood result numbers were extremely high did not mean she had celiac disease. I was thinking, "great....what else could it be then?" She sent me to take Hailee back down to the lab to get more blood work done (poor girl!) This time the test was specifically for celiac. If the results came back positive again, then Hailee would need to go in for biopsies of her small intestines for the final confirmation. (Amazing how many times they have to "Confirm" it to be celiac.)
This morning the doc called and told me that Hailee's blood work came back and that it has the high elevated levels for celiac and that she would need to have the biopsy's. Originally when I found out Hailee had celiac, I was completely overwhelmed and very emotional. This time I felt so much peace, knowing that we finally did receive an answer to our prayers and that we can get our daughter feeling better. So it looks like Hailee will be going in Monday morning for this procedure.
I am not looking forward to having Hailee have the biopsy, but they said it is not painful (Thank goodness!). Hailee already HATES going to the doctors so much and constantly tells me "Mom, I just want to get outta here!" But hopefully once everything gets settled, we wont be having to make doctor visits for a very long time!
All in all, things are going much better!
To give an update on Jake....
He is 11 months old now. Crazy, huh?? I still can't believe it! He is such a funny lil kid. He is so destructive (in a cute way...for now. lol) and is always so busy! He absolutely ADORES Hailee. He can say "Dadda" "Mum" "Baba" and "Dog" and tonight he added "Doggy"
He can also now take 3 good steps! I think we will be having a walker this month! So excited!
Jake is an incredible eater. He will eat practically everything!
He takes 2 naps a day, one at 1030am and one at 3pm. They usually last for an hour to hour and a half. He goes to bed at 8pm and wakes up at 730am. I love his schedule!
He is such a happy little boy and has so much personality. He cracks up about everything, loves playing games. His favorites are rolling a ball back and forth, playing chase (We will crawl and chase him or he will chase us) and he also loves playing peek-a-boo. He bring so much love into our home and we just love him and Hailee to pieces!
Now time to enjoy some pictures!

Jake loves his cars!
Grandma time!
Best buds
Hailee and Kylee
Jake and Tyler

Miss Karate girl!
Hailee's spider
Jake didn't realize he was supposed to put the chalk on the driveway...not in his mouth! lol
Jake's first haircut! So cute!!
Hailee had her bangs trimmed too!
Hiking at Santa Rosa
She is fearless!

Hailee was our guide. She kept telling and showing us which we we needed to go.

Monday, March 21, 2011

My Pictureless Post

So, I did it. I gave in. I swore I was over doing a blog. My pictures are all so out-dated, so many exciting events have come and gone, and then I decided there was just too much to try and catch up on. But now I'm back. Mainly for another reason. I need somewhere to write. To express my thoughts and get support from all of my fellow bloggers. So, here's to catching up on life.
The past 5 months have been hard over here at our house. Not the typical hard, but the hard that makes you cry. You ask why? Because we have had to see our daughter Hailee suffer in pain, and it seemed like each couple of weeks, she would have more pain and it would take longer for her to feel better. So, here is the story.
We started noticing about 5 months ago that something wasn't "right". My Mom and I had the kids out for a hike and Hailee was running around full of energy like any other typical 3 year old, when all of a sudden, she stopped dead in her tracks and said her stomach hurt really bad. That's all it took, she crawled up into the stroller and was wiped out for the entire day. I didn't think too much about it at first, but then we started noticing this was happening more frequently. I took her into the doctors and they thought it must be a UTI so she was tested and it came back normal. Hailee was then back to her happy self full of energy, and then, this time on Christmas night, it hit her again, HARD. She was up all night throwing up, diarrhea and in miserable pain for several days. She looked horrible, and just wanted to either be held or lay on the couch for the entire day watching cartoons. By end of the week, she was feeling better again, and then about a week later, it hit her again.
This same routine went on for several more weeks. Feeling good to being hunched over the toilet, throwing up, and wiped out for days at a time. We also noticed that she was bruising for no reason and was extremely pale alot. (Like seriously as white as a ghost at times) It was so hard to watch this, and whenever I was able to get her into the doctors, she happened to have a "good" day so I don't think the doctor fully believed what I was telling him.
We went to Washington in February, and this is when we realized that something major was really going on. The first day in Washington Hailee started throwing up and had diarrhea again. This lasted for 5 straight days. She was pale, tired, and lost almost 2 lbs. I called the doctors to get an appointment the first day we were back home from vacation, and of course, she was acting alot better. They tested her for UTI again, and this time it came back positive. She was put on antibiotics for 10 days, and those 10 days she was feeling pretty good. Day 11 was completely different.
Hailee was back to throwing up and the runs and I called and got her back into the doctors and told him I really want her blood work done and an ultrasound ( I had been asking for these to be done for over a month, and he kept denying me). But this time he agreed. We had her blood work done that same day. It was a Thursday.
Friday morning, I was outside my house, turned on Pandora and stuck my phone in my water bottle belt and was about to take off for a run when my phone started ringing from an "unknown" number. I usually don't answer if I don't recognize the number. But I felt like I should just answer it, and so I did. It was Hailee's pediatrician. He told me that her blood work came back and there was some major concern with her calcium blood serum count. He said it was a very serious issue and I needed to get her up to the hospital as soon as I could to have her blood test re-done. If the numbers came back the same, then he was going to send her to CHOC hospital to be admitted and if it happened to just be an error, than that would be wonderful. Of course, as a Mom, I was overwhelmed with emotion. This is my little girl. Things aren't supposed to be wrong with her. She's healthy. She's beautiful. She doesn't deserve to have to suffer.
So, I took her to the hospital, and was so happy my Mom and friend Wendy were able to come be a support and help with the kids. Once the blood work was done, we had to wait for an hour, which seemed like an eternity, for the doctor to call. Once he called, he told me her numbers looked great! We were all so relieved!
Hailee spent the night at my parents house, and the next morning they went out hiking, and maybe 10 minutes into the hike, her intense stomach pains returned and she was as pale as a ghost and had to be carried the entire way. (She didn't want to turn back, bless her heart, she still wanted to go hiking with Grandpa and Grandma!)
I called the doctor Monday morning and let him know how she was. Wednesday she had her ultrasound. (3/9/11) He was having an ultra sound done on her kidneys and rest of her organs to see if anything would come up to explain these intense stomach pains with the runs and pukes. Well, Friday night 3/11/11, our lives were changed forever.
Gregg was working and I was at Target with the kids. It was about 6:30pm and I was about to check out and head home. My phone rang from, once again, an "unknown" number so I figured I better answer it. Once again, it was Dr. Deterville. He told me rest of her blood work came back and he had a major concern. Actually, he said it just wasn't a concern, it was something serious. He told me that by the numbers, it shows that Hailee clearly has Celiac Disease. The normal range is from 1-19, and her number was 123. He told me to immediately take her off all gluten and wheat. He also told me that he had a major concern with her ultrasound (which we met this past week to discuss) but long story short, her left kidney is enlarged. He has another ultra sound scheduled for her next week and we will figure out what is going on.
But back to Celiac Disease. Before 3/11/11, I really had no clue what it was. I had heard of it, but never cared what it was. But now I do. For those who don't understand what it is, celiac disease is auto immune disease where the lining of your small intestines is damaged from gluten. Gluten is found in wheat, barley and rye. There is no medication to fix this, it is just a lifetime diet change. If the diet is not changed, it can cause even more damage to the small intestines which usually results in intestinal cancer. (And along the way, extreme sickness, horrible stomach pains, vomit, diarrhea).
After the phone call, I had mixed emotions. I was thrilled that it was something "curable" but unsure what it really meant having to change our whole families diet.
It hit me hard Saturday morning. We woke up and I went to make the kids breakfast and I started reading all of the ingredients, and practically everything we had, contained wheat in it! I started to cry, because I didn't even have anything "safe" for Hailee to eat, besides a banana. After she ate her banana, she told me, "Mom, I'm just starving! I want a waffle please!" It broke my heart. I knew she wasn't going to understand, and I gave in and made her a waffle. I knew it was going to hurt her stomach, but I didn't know how to deal with it just yet. We went shopping that day and bought a bunch of gluten free foods, and over that weekend, were so blessed with many gluten free foods from my family and friends.
It has been an emotional adventure so far. Now that its been 10 days since we found out, I finally feel like I can do this. I know that I was having such an emotional time with it because I kept thinking about her future, like, "Is she going to feel left out when she goes to school because she will have different foods?" "Is it going to make her sad?" " Are kids going to make fun of her because she has special dietary needs?" It was just alot to be thrown at with out talking to the doctor yet.
I am feeling so much better now and have been having alot of fun finding new meals that the entire family can eat that are GF, and also that Deterville and I have been able to sit down and talk about it all.
Hailee still has a hard road ahead of her. We meet with the specialist on Wednesday, and Deterville said that they will most likely be doing a biopsy of her small intestines to see how much damage has been done. We are praying that alot of damage hasn't been done, but we'll see. I am so proud of Hailee and what a brave girl she has been through all of her blood work and ultra sound and several doctors appointments. She is just amazing and impresses me.
I know that this is a huge blessing and answer to our prayers that we finally know what has been causing her so much pain. The news could have been much worse.
What really calms my heart when I am feeling overwhelmed, is knowing that Hailee is such a choice spirit, a daughter of God, and that she wanted to come to this earth so bad that she didn't care what kind of trials she would have to go through on earth. She just wanted to come. She is such a blessing in our family, an amazing daughter and an amazing big sister to Jake. We love her so much, and are so happy that she will finally be able to feel better and be back to her full or energy girl that she was.