Monday, January 30, 2012


This week will be the seventh week we've been sick. Yesterday was my first time going to church in 7 weeks. It felt so good to go to church and I was so incredibly excited to see and talk to everybody! I love our ward.
Savannah and I have been sick basically the whole last 7 weeks and haven't left the house. I think our bodies aren't used to leaving the house because we're both down again today. Dang it! But Daddy and the girls did have so much fun sitting in their fort and hiding from Mommy. Savannah is not used to leaving the house. Last week when we went to Tessa's doctor appointment, Savannah was crying the whole time that she wanted to go home. Ha! We need to have a huge party when we finally all get feeling better.

Thursday, January 26, 2012


Tessa had an appointment with her pediatrician to follow up on the results of her MRI.  Her head measures in the same percentile as her body weight, so we still don't have answers for the extra space in her head.  The doctor wants Tessa to see a geneticist.  She has something else going on besides ocular albinism.

She's finally rolling over!  Woohoo!  And she does pretty good sitting up by herself now too!  What a big girl!

Saturday, January 21, 2012


I'm going to make our blog private again.  It kinda makes me nervous seeing the random states/countries our blog is viewed from.  I'm cool with people that I don't know super well viewing our blog, but not pedophiles.  Ha!  Leave your email address and I'll send you an invite!


We've all been sick since before Christmas. I'm finally feeling good enough to run again.  Savannah is more sick now than ever.  I feel so bad for her, she's so miserable.  While I was on my run this morning, Daddy was nice enough to bathe Savannah and get her dressed.  When I walked in the door and saw what she was wearing I couldn't stop laughing!  Daddy has a great sense of fashion!

Thursday, January 19, 2012


Tessa's therapist, Miss Susie came yesterday.  As you can see, Tessa isn't sure if she likes it.  But it's so good for her!  It's always reassuring to talk to her too.  She has so much hope for Tessa and reminds me of all the resources that are out there to help Tessa.  I've read, in pictures you can usually see the Albinism in their eyes easier.  In the first picture, you can see Tessa's eyes are really light.  I don't know if that's just from the flash or if that's the Albinism.  You can also tell she's worn out because her eyes aren't looking in the same direction.  She has an appointment with her pediatrician next week to follow up on her MRI findings.  The thought of that appointment makes me want to throw up and cry.  Hopefully we will get news, whether it's good or bad.  It's so hard not knowing.  We sure love our Tessa!

Saturday, January 14, 2012


This picture cracks me up for so many reasons!  Tessa got new glasses because she needed a stronger prescription and she grew out of her old ones.  These glasses look giant on her little face.  Really, I think they fit well, I'm just use to her old ones that were too small.  She's teething and has been so grumpy!  For the last week or so she hasn't slept through the night.  Last night she woke up about every hour.  I had no idea what was wrong until I saw her first tooth this morning!  The little thing that she's sitting in lights up, makes noises, moves in circles and does several other fun things, but instead she's chewing on Savannah's stroller.  Look at her face in this picture!  Ha!  I need something strong for this pain!!

Wednesday, January 11, 2012


Savannah did so good!  She's so excited her teeth are pretty and sparkle now!  No cavities!  Woohoo!

Monday, January 9, 2012


This post is probably going to be long and depressing, it's mostly for the purpose of journaling.  I was hoping that when I posted about Tessa's diagnosis I would be relieved from the results of her MRI.  I don't even really know what to write because my head is just a big mess. I have so many thoughts, concerns and fears for Tessa.  When we were in Utah, Tessa had several appointments at Primary Children's Hospital.  She was diagnosed with Ocular Albinism.  So she's Albino.  But not the kind of Albino you think of when you think of someone with Albinism.   She doesn't have light hair or skin.  It's just in her eyes.  Trevor and I both carry the gene.  How weird is that?  Both parents have to carry the gene for their children to have it.  1 in 4 of our kids have the chance of having it.  So we won't be too surprised if we have more kids with it.  She is very sensitive to the light.  The doctor said when she gets a little bit older she'll probably cry when she goes outside.  She's farsighted.  She'll never be able so see things clearly because part of her retina isn't fully developed.  When she's trying really hard to focus on something her eyes shake and sometimes it causes her whole head to shake.  The doctor also wanted to do an MRI because she has been really behind in reaching her milestones.  She couldn't hold her head up until she was about 4 months old.  She still can't roll over and is just now learning to sit up and play on her tummy at 8 months old.  They aren't sure if this is due to her vision impairments or neurological problems.  We got the results from her MRI today.  She has a lot of space between her brain and her skull.  They're not sure if it's because her brain isn't growing or just because she has a big head like her Daddy.  Of course I am so hoping she just has a big Taylor head.  He's going to send the results to her pediatrician out here in Alabama and we'll go from there.  I don't think I've cried as much in my whole life as I have these past several months.  I've always dreamed of having lots of kids.  But I don't feel like it's fair for me to bring lots of children into this world knowing that they may have this.  It also breaks my heart looking at my perfect beautiful baby, and thinking of her in school getting made fun of.  I think that's probably what I've cried over most.  I know she will figure out how to do things with the eye sight she has.  But thinking of her feeling lonely and sad makes me so very sad.  It also makes me feel like I need to be an incredible example to her and let her know that I have a testimony of Jesus Christ.  She can always turn to him and our Heavenly Father for comfort.  I SO hope she knows that someday.  We met with a therapist for her last week.  I think she'll only have therapy once a month.  I wish she could have it everyday.  It's hard to see other babies and the things they can do that she still can't.  Not because I'm embarrassed or jealous, but because I feel like it's just a little preview of what's to come.  On a positive note, they do have olympics for the blind and visually impaired!  I'm going to eat a piece of cake now.  Or maybe the whole cake with a bowl of ice cream.

Tuesday, January 3, 2012


This is a huge step for little miss Tessa!  She only sits up for about a minute and then falls over and refuses to try again.  But we're so proud of the progress she's made!  The therapist comes out for the first time tomorrow. I've heard great things from other mom's who have children with Albinism that have done early intervention!  Maybe we'll even get her rolling over and comfortable playing on her tummy soon!

Monday, January 2, 2012


I saw this on pinterest and loved it!  Especially thinking of Tessa and the challenges she'll face.