Wednesday, December 28, 2011

Kure 4 Kamryn Fundraisers

As many of you know, Will and I are still in school. Kamryn is on Medicaid insurance, and Mayo Clinic does not accept this form of insurance. We are working on different fundraisers to help get her where she needs to go. In this post, I will be listing and explaining these fundraisers.

The proceeds received will go into Kamryn's account at First Bank of Boaz. After we have completed all of the fundraisers, a percentage of the profit will go to the Niemann Pick Disease Foundation and the Ara Parseghian Research Foundation.

Give Forward
Kamryn's Godmother, Gina Reeves, created a Give Forward account to help raise money. You can visit this site at www.giveforward.com/kure4kamryn

Initial Outfitters
I have created a Kure 4 Kamryn event on my Initial Outfitters page. I will receive 30% of the sales in profit. This money will go to the Kure 4 Kamryn account. Initial Outfitters has jewelry, handbags, and other accessories at a great price and with great quality! This is a great way to help Kamryn out. Please visit the site, and tell everyone that you know.

WWW.INITIALOUTFITTERS.NET/KAYLABRUMBELOE
- Click on Shop Now
- Click on the Kure 4 Kamryn Fundraiser

Kure 4 Kamryn Bracelets
We are waiting on another shipment of the bracelets. Once those come in, I will be contacting more of you who offered to help sell! Each bracelet is given with a donation of $5 or more to the Kure 4 Kamryn donation

Charity Ride/Event
There will be a big event on March 24, 2012 at Civitan Park. I will have more details once the time gets closer. If you are interested in donating raffle items or volunteering to help, please let me know!

The Charity Ride is being organized by Jason Vaughn. The ride will start at 10 AM at 12th St Baptist Church on 77 in Rainbow City. A donation of $20 or more  is requested but not required. With every $5, a raffle ticket will be given. For more information, please contact Jason Vaughn at 256-960-0557.

If you have any questions or would like to volunteer, please contact me at:
256-505-2114
Kaylabrumbeloe@gmail.com 

Tuesday, December 27, 2011

1st Christmas Pictures



Daddy, Mommy, & Kam on Christmas Eve
 



Christmas Day
  



The Most Wonderful Christmas Present of All!
  



Beautiful Kamryn
  


Christmas Eve - Meme, Darold, Wade, Aunt Meg, Daddy, Mommy, & Kam
  



Will's grandmother & Kamryn - They look so much alike in this picture!
  





Will's family
  



My family
  



Sandra & Kamryn
  



Mommy & Kam Kam
 

Our Family :)
  


Daddy & his Kamy Bear ( can't figure out how to rotate it)









  

Wednesday, December 21, 2011

5 Months Old!!!

Today Kam is 5 months old, and I can't believe it! It seems like yesterday when she was first born. These past five months have flown by.. they have been the best months of our lives!

New Findings:  Today Kam learned how to play with another toy on her exersaucer - the teapot. The teapot makes noise if you push down on the top of it, and she has been doing it all morning! This was the last toy for her to learn how to use. I am so proud of her! :)

Kamryn has found her thumb! She has only sucked her thumb once prior to this week.

New Foods: Banana Yogurt, Banana Apple Pear baby food, mashed potatoes

New Toys: "Kisses" baby doll, Luv U Zoo Jumperoo, pink rolly ball

New People: Papa Darold's family- Adam, Annie, Summer, Justin, Emily, & Ethan; Brandy Brooks, Nema & husband, Shannon Cahill & Skylar Crochet

Bedtime: Kamryn has been having to fall asleep with her back rubbed this week. She has been wanting to be rocked much, and she has really just wanted her back rubbed.

Vacation: We went to see Meme this weekend in Ozark. Kamryn loved it! She was so excited that she wouldn't hardly sleep! One night, she woke up at 3AM and thought it was play time. She woke up about 6-8 times each night. I'm guessing this was because of all of the excitement. She has really been fighting her sleep this week.

Medical:
Last week we had to take Kamryn to Birmingham on Wednesday to meet with the doctor. She had a fever that day so when we got  back we had to take her to the ER. The doctors never found out why she had a fever, but her Gmeme thinks it could be from her 4 month shots. Sometimes babies get a fever a few weeks after. The fever was gone by the time we left the hospital, but I was a nervous wreck.

Kamryn scratched her eye the last night that we were at Will's mom's house. No matter how short I trim her nails, she always claws at her face. I'm not sure what to do about that. I trim them all of the time, but she still manages to scratch herself. I was worried to death about her eye, so Will took her to the doctor yesterday and he prescribed some ointment. After using it once, it is all better!

One symptom that occurs with NPC is feeding problems. Since Kamryn was born, she has had problems with choking on her bottles. We have the slow nipples, and those usually are fine. I have noticed that there are times when she still has problems drinking fast enough. This could be completely unrelated to NPC, because other babies have problems like this too. However, it is something that I thought I should make note of.

Kamryn's stools have went back to being very loose. When she swapped back to Isomil last month, she started getting very constipated, but now it has reversed.

Weight: A little under 15 lbs.

Saturday, December 17, 2011

Just the way you are

We have been making Will's mom a DVD with videos and pictures this weekend. The following video is the first half.

Tuesday, December 13, 2011

The Sweetest Personality

I haven't been able to write in the past few days because Kamryn and I were both sick. Luckily, she didn't seem to feel as horrible as I did. This past week has been so fun with her. She is definitely getting more of a personality and so much smarter by the day. She has the sweetest personality, and we are soaking up every minute of it!


New Foods: Sweet Potatoes (She loves them!) & Prunes (She hates these. She spit them out everywhere!! It was a mess. We won't be trying those again.)

New Toys: We gave Kamryn ANOTHER early Christmas present. Haha! What can I say, I get so excited about giving them to her. This toy is a soft block with different things on each side. On one side there is a mirror. She loves this! We sit and look at ourselves in the mirror together, and she loves to try to grab at me in the mirror. She laughs, and I think it is so sweet!

New Findings: This week, Kamryn found the flip book on her exersaucer! She has learned to flip the little pages up and down. I am such a proud mommy! She has learned how to play with almost every toy on it now! We also had to adjust her height a notch - Yay! This means she is getting taller :)

Sweet Moments:
* Last Wednesday, Kamryn reached for me for the first time!!! I can't tell you how happy it made me. She has started reaching for me since then. She is also somewhat learning how to wave.

* She has started saying "Hi!" I''m not sure if this is by accident or not, but it sure does sound like the real thing.

*She has been such a cuddle bug this week. Most of our time has been spent cuddling watching Baby Einstein!

* She is learning to kiss - mouth open! Ha! So far, she has kissed me, her daddy, and her Grammy.
* She is smiling nonstop, and she giggles all of the time.

*This week, Kamryn and her Meme have been swapping videos! We have sent her Meme videos, and she replies with a video. We then send a video of Kam's response to that video. Kamryn loves it. She reaches for her Meme in the video and tries to kiss the screen. She sure does love her Meme!!

* Yesterday, Kamryn spent the day with her GMeme & GPawPaw (Great Meme & Great PawPaw - My Grandparents.) They said that she did so good. She loves to play with her GMeme & sit and talk with her GPawPaw.

Visitors this past week - Jessie Biddle, Samantha Hodge, Hunter Calvert, Ryan Mathis, Grammy, PawPaw, Uncle Brad, GMeme, GPawPaw, Cheryl Ivey, Amber McAbee, Dania, Richard McAbee, Wade,  & Meg. She was in a great mood while around all of them.

Bedtime Rituals - Bath, Bottle, & Rocking. She is now getting to where we can put her in bed half asleep and she falls asleep in bed. She loves to reach for her daddy and make sure he is still paying attention to her. She rests one of her arms up by his face. We are also starting to sleep with her facing away from me - what many would call spooning. Yes, she still sleeps with us, and I don't plan to let her sleep alone for a long, long time. Some people are against this, but it's like my Meme says, "She is only young once. If she wants to sleep with you, let her." When she was younger, we tried so hard to let her sleep alone. It just never worked. From birth, she has wanted to be held the entire time. I love it too, and I don't think I can sleep without her anymore.

Weight: 15 lbs!!

Tuesday, December 6, 2011

Strong Enough

Today Kamryn tried what I consider to be her new favorite food.. BANANAS! She absolutely loved them! She gets excited about eating already, but she was extremely excited about these. My favorite part was singing a little Gwen Stefani and getting her to do the "Go Bananas" cheer. Ha! If you have been a cheerleader, I am sure you are familiar with this cheer. I think she found it to be very entertaining. I included a picture of her eating peaches last week. Kamryn has been extremely active today. She has been making all sorts of noises with her mouth.. ones that I have never heard her say before. She has also been laughing and smiling all day. Earlier, she and I sat in the recliner and just talked to each other. It was the sweetest thing! I just live for little moments like that. Even though my housework might not be caught up on and we might not be completely unfinished packing, I don't care. I would much rather play with Kamryn than do all of that anyway. :)

Even though things have been great today, I have had a lot on my mind. I am trying not to think about what negative things the future could possibly hold; sometimes, I just find myself thinking about how bad things might become. It scares me. I have always been someone who has to be in control. I don't like the unknown.. It just makes me extremely uncomfortable. So, I have to remind myself constantly that God knows what he is doing, and he has a plan. While I may not know that plan, he does! I am having to work on one of my biggest weaknesses.. trust! I am having to not only trust in God, but I am having to trust the doctors, nurses, etc.

Through all of this, God has really opened my eyes, and I am being brought back to the relationship I once had with him. In a way, I feel like it is sad that it took something this traumatic to make me realize just how much I had backsliden... but, I feel like God understands. Maybe sometimes it takes getting knocked down completely so that you can get back up again. I am so thankful that my family raised me in church, taught me about God's love, and guided me into having a relationship with him. Without having a strong relationship with God before, I don't think I would be able to feel the way that I do.

This is exactly why I feel it is important that we raise Kamryn in church and teach her in the ways of the Lord. In one of my earlier blogs, I posted about feeling led to turn my radio to the Christian radio channel. Well, about 3 weeks ago, I felt the same way. I had just talked to one of my friends/boss at the nursery about everything. She has been so helpful through all of this and has been through a very similar situation. It is truly amazing how God works. I feel like he crossed our paths for a reason. While we were talking, she was telling me that God understands when you feel upset. He is always there. At the time, I was so confused. We didn't have a diagnosis for Kamryn yet, and I just couldn't understand why God had put someone so innocent and perfect (Kamryn) in a situation that was so horrible. I felt so confused, mad, and weak. Well, I had been asking God to please just let me know that he was there. When I turned my radio, "Strong Enough" by Matthew West was playing. I felt like it was God's way of telling me that he was there. If you listen to the song, I think that you would definitely agree. This song is so amazing, and it is great to listen to when you feel like you aren't "strong enough."

Monday, December 5, 2011

Fundraising Fun

NPC is a fast moving disease, so we too have to be fast moving. We have already started working on fundraisers. So far, an online donation site, bracelet fundraiser, and charity event are underway.

What will the money go toward?: The money will be going to Kamryn's medical expenses that are not covered by insurance - this will include the trip to Mayo clinic. There are also other expenses that it will cover, including: travel and lodging expenses. Will and I are still in school, so Kamryn is still on Medicaid. Some doctors do not accept this form of insurance. A percentage of the money made through fundraising will go to the Niemann Pick Disease foundation for research. If we have money left over from our expenses, it will stay in a bank account that will be used for Kamryn's future medical expenses. Please join in helping us find a Kure 4 sweet Kamryn. She deserves it!!!!

Kamryn's godmother/ One of my good friends, Gina Reeves, has started an online fundraising page for Kamryn at giveforward.com! You can find this at : http://www.giveforward.com/kure4kamryn

Last night, we ordered bracelets to sell for Kamryn. These say "Kure 4 Kamryn" on one side and "II Kings 20: 5" on the other. They are silver (the color of the NPC ribbon) with pink ink injected into the engraving of the words. Pink is for Kamryn. :) We have ordered adult and childs sizes. A big thank you to my aunt and uncle - Jason & Kathy Vaughn - and their children - Dania Floyd and Jarrin Vaughn!

We are planning a charity event/ bike run for March. My uncle is putting together the motorcycle  run. If you know anyone with a bike, please tell them about this. The last stop of the bike run will be at the BIG event. We hope to have door prizes, food, paintings for sell (made by a few of my friends and myself), tshirts, and bracelets. If you have any ideas, please send them my way!

If you are interested in helping with any of our fundraisers, please contact me through FB, email, or by phone.

256-505-2114
KMILLE11@my.athens.edu

Sunday, December 4, 2011

Friday's Visits

Yesterday Kamryn had two doctor's visits. She saw her neurologist and opthamologist in Birmingham. She was there all day and did so good! Our neurologist spent a lot of time with it. She took us to the conference room and talked to us for TWO hours. She was very informative and answered all of our questions, and believe me, we had a ton! She also printed out paperwork for us to look over. Some good news is that we have been accepted by Dr. Mark Patterson at the Mayo clinic! We are calling him Monday to make our appointment. Dr. Patterson is very experienced with NPC, I am adding one of his videos below.



At our visit, our neurologist talked to us about getting tested for our mutations. We will be doing that very soon. This is important because we need to know what mutations we each contributed to Kamryn. Once we know our individual mutations, we will be able to get the rest of our families tested. We really need to know who has it for family history purposes and future births. The neurologist also talked to us about our visit to the National Institute of Health. We are also in the process of setting this up! I am currently waiting on the Nurse Practitioner to get back to me on available dates. When we go to the NIH, we will stay for a full week. They will do all sorts of testing on Kamryn. Some of these include ultrasounds, an MRI, blood samples, and a Spinal Fluid sample. All of the testing will help us learn where she is developmentally, as well as where she stands with the disease right now. At our appointment, we were told that Kamryn is a rare case. Although she has been diagnosed very early, she isn't showing any symptoms! I think this is a God thing. God has allowed us to find out early so that we have a chance to fight for her. We also discussed treatments. She feels that Miglustat is the best option right now and doesn't want to start it until Kam is a year old. Ultimately, it is our decision when she starts it. We are just leaning God, and trusting that he will guide us in the right decision.

Thursday, December 1, 2011

A Message From God..

I just have to share this amazing bible verse that I feel like God wanted me to hear today. I was driving down the road earlier, and I just felt led to turn it to the Christian radio. Sometimes I just feel that way. Everytime I get that feeling, there seems to be a message to me playing. Today, it was a message sent through a sermon. The preacher was preaching about this verse, and it seemed like everything he said was directed toward me. He spoke about how God took care of the birds and the flowers. He talked about how we are even more important than the birds and flowers, and God will take care of us. We can't control what is going on, and worrying won't do any good at all. We have to put it in God's hands and have faith. We have to trust in him. I got chills, and I just really felt like God was speaking to me. Well, I got home and started checking my FB inbox. A friend of mine from High School sent me this verse for inspiration. How awesome is that? Now, I am really feeling like it was a message from God.

Matthew 6:25-34

New International Version (NIV)

Do Not Worry

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?

28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

* copied from BibleGateway.com

What is Niemann Pick Disease?

Niemann Pick Type C disease is an autosomal recessive disorder that is passed down by two carriers. There are other types of Niemann Pick Disease, but Type C is set apart by childhood onset in most cases. This disease affects the lipid metabolism and does not allow the body to breakdown cholesterol properly in the body. This inability causes build up of cholesterol in the spleen, liver, lungs, bone marrow, and brain.

The NPC1 gene is found on the 18th Chromosome. Each parent contributes one gene to their child. Carriers have 1 gene that is mutated. Someone with NPC has both of these mutated genes that have been passed down to them by 2 carriers.

Currently, there are only about 500 known cases of this disease worldwide. Although the disease is very rare, research is coming a long way. There are many different treatments and therapies that are being tested to help slow the disease’s progression.

For more information, visit:

http://www.nnpdf.org/

http://www.parseghian.org/




http://addiandcassi.com/

http://hadleyhope.com/