HDL2

Today is rare disease day. I haven't talked about it much to people outside of my family but my sister has a super rare disease (HDL2 - Huntington's Disease Like 2) that will shorten her life. Only fifty cases have been reported worldwide so not a lot of information is available. I don't know why some people are handed trials that are unbearably painful but I do know that families are forever and that her mind and body will one day be restored and perfect.

I'm including my dad's words about Camila that he had posted on his own blog.

Update on Camila

We were invited for a visit to Camila's doctor this past month in which they told us that the University of Utah research lab had found an abnormality in her chromosomes that identified the disease that has caused her declining health.  It is called HDL2, or Huntington Disease Look Alike. It creates excess protein to her brain that is killing her brain cells. This is a very rare disease that was passed to her from her mother, who also had a similar illness.  There is no known cure at this time.  However, it does confirm what we had suspected and gives us a better understanding of the reasons behind her declining health.  It also clarifies our expectations as to her future health as the disease progresses.  

This process of learning about Camila has occurred by many small miracles.  We were first contacted last year by her aunt, who had placed her in our home when she was 9 years old.  This contact had been facilitated by our previous stake president in Brazil who knew about our adoption.  He still works for the Church in Brazil and is responsible for the Membership records in Brazil.  One day when they were trying to contact this aunt, who had become less active and was in the address unknown file, she asked about Camila. Through subsequent contacts, I shared details with her about Camila's sickness and she shared her understanding about the similar sickness in Camila's mother and grandmother.  This prompted us to request testing for Huntington's Disease. When she came up negative, we were surprised, but the University of Utah was willing to continue research based on a research grant.  All this led to our eventual understanding and the diagnosis of her illness.

In retrospect we have been able to see how this illness had been attacking Camila for many years.  Where many, including us, were too quick to blame others or circumstances, we now understand what was going on.  It has also given me an amazing feeling of love for this special girl who has had so many challenges in her life.  I know that she will be returning to her Heavenly Father who will welcome her home with open arms.  She has been sent here to help each of us to learn and grow.  Her situation is difficult, but none of it is her fault.  We don't know how long she will continue to live as her brain cells deteriorate, but we want to help her to be as happy as possible while she is still on this earth.



I'm also posting some screenshots of pictures that I found on my dad's computer of Camila and how she looked before this disease started taking over her mind and body.

Sweet Girl

I give this same look to my food too. :)

Sweet tooth. Sweet girl.

Sick Baby

Poor Grant has had a rough month. He had RSV/Bronchiolitis and once he got through that he got the flu that lasted ten days. Thankfully his illness didn't reach the point that Hudson did when he had it as a baby but it was still so sad. During all this he also was teething and now has two little teeth to show for it. One thing for sure is that this baby is so loved and had an endless supply of cuddles upon cuddles.

Valentine's 2019

Happy Valentine's Day! Danny isn't one to plan ahead or think of surprises so this year I was almost shocked to see that he had written a letter to each of us along with a little gift. We hadn't talked about this holiday at all and I wasn't expecting anything to happen so I was happy and pleasantly surprised.  He did this all on his own. Everything was set up on the table on each of our individual stops and it couldn't have been more perfect. Addie got a fishing game that she had been wanting for years now, Hudson got a new Hot Wheels truck and Grant wasn't left out and had a little new toy just for him. Danny did great with getting me non red roses and a case of chocolate covered strawberries.

Addie's letter - "Thanks for being the best daughter in the world! You are a lot of fun to have around. We should play more and go have some fun. I love you to the moon and back! Love Dad. Happy Valentines."

Hudson's letter - "You are the coolest kid around. We are blessed to have you in our home. Let's go birding sometime. thanks for being my little explorer. I love you 200 million years ago and back. Love Dad. Happy Valentines."

Grant's letter - "You are at one of the best ages right now. You are so happy and watching you grow has been so much fun. I love you to the bottom of the ocean and back. Love Dad. Happy Valentines."

My letter - "Happy Valentine's Day! We are alive! I know life is not always easy and sometimes it sucks. I would rather have a hard, not always perfect life with you than an easy always perfect life with anybody else. Thanks for being my best friend, and for being mine even though I am as difficult as Addie sometimes. I know what I got you is not great, but I do think about you a lot and I love you to infinity and beyond and back. Love your hunky husband, Danny."

200 days old

Grant is 200 days old! I love this happy, smiley, chill baby so much.

First Bites

Grant was introduced to both table and baby food recently and he is not a fan. At all. Our first attempt was spaghetti. It was what we were having for dinner so we gave him some to try. He screamed the moment he realized he had something on his tongue. He did not like it nor did he know what to do with it. I had waited for him to turn six months old before introducing any foods to him because I was going to do the baby led weaning approach. That is when you skip the baby jar foods and go straight to table foods. We have done both with our other kids. With Addie we did the traditional puree baby jar foods and she did great with it however as a toddler she was a pretty picky eater and still is to this day. She had a problem with a lot of textures when trying new foods and it's really hard still to get her to eat a variety of foods. With Hudson I had heard of baby led weaning (BLW) and was on the fence about it but then one day he took a whole taco right off Danny's plate when we were distracted and started chowing down on it. He loved it so much. That's when I felt confident in moving forward with the table foods approach. I don't know if it's because of BLW but he turned out to be an amazing eater. He still is a better eater than Addie and will try most foods with no problem. Because of our night and day differences with Addie and Hudson I wanted to try it with Grant to see if we can avoid another picker eater. Well it might be too early to tell but so far he's not on board. After we had tried spaghetti, we also attempted avocados and he still did not like it. Danny went to the store a couple days later and bought baby oatmeal and purees. He reacted the same way. I almost wish I had recorded a video of his scream whenever he had food on his tongue but it was pretty sad. We do have to consider that maybe the timing is just off as well because poor baby is not feeling well. We'll have to give it some time and then try again but for now enjoy these cute little sad faces of a little boy who has food that isn't mommy's milk in his mouth.

The calm before the storm. First time trying oatmeal.

Too cute

Danny was changing Grant's diaper and must have been distracted because he put Grant's pants on before snapping up his onesie. It was too adorable that I kept it that way instead of fixing it haha.

PJ Masks

Addie and Hudson both love Disney's PJ Masks so much and are constantly dressing up. Addie got her Owlette costume for her Owlette themed birthday party in September and Hudson got his Gecko costume as a birthday gift in December. Both costumes came from their Aunt Marie and it's probably their favorite thing to play. I really thought Addie would wear hers for Halloween night until she went as a tiger but they both love it and look so cute in it. Then for Christmas all three kids were given more PJ Masks dress ups from their Aunt Amy. Grant won't fit into his for a long time but it was very cute and thoughtful that he was included. Even though they've had their costumes for awhile now and wear it all the time I finally got pictures of them and I'm so glad I did. Look at how cute they are.