1.23.2014

November 2013

Princess party!:

Chloe's friend, Abby, had a princess birthday party! I was so hesitant for Chloe to go, thinking she would get overstimulated and/or be left out. I couldn't have been more wrong! She was thrilled to be in her princess dress, loved getting her nails and makeup done, loved being with the other girls, and more than anything loved dancing to music and playing with the parachute! Love her! I'm so grateful to the other kids for including her. Their parents taught them well. 

 

 
 
 
 
 

Getting ready for baby: with my due date of December 17 quickly approaching, November was filled with rearranging the house and buying anything I thought we might need once the baby got here. We turned what was the family room into Chloe's room and what was Chloe's room into Sam's room. We bought lots of decorations and a new chair for Chloe. I was so worried about having a baby and neglecting Chloe's needs. I was so worried in November, I can't even explain! Ultimately I decided to go with the wisdom from the scriptures that where there is love, there is no fear. I let the love for my babies drive out the fear. Chloe's cute new chair helped. Somehow I figured Chloe pile love being in her new chair and not feel neglected when I had a new baby to take car of. Well, it might have been a false sense of peace about that, but it helped with my anxiety. Chloe does love her chair, though!

October 2013

Huntsville to listen to conference:

Oby & Henry 
  
Tami & Will
 
Miss Chloe
 
Little diva. Love her!
 
Most of the crew. We are so blessed!

Chloe's 1st grade school picture: 
 

Aqua therapy:

Chloe had always loved water and I had never been able to find aqua therapy that would work for her, but I finally did! Covered by insurance and close to our house... So perfect! She just loves it! And we love the therapist, Michelle, too. What a blessing!
 
 

Croup: 

Chloe was so sick the last week or two of October. She had croup that didn't respond to the first treatment. Poor thing, she was so miserable. This was the same week Oby had another surgery and I took a terrible fall, cracking my tailbone. It was a rough week to say the least. But it is nice to look back and realize we survived! At the time, it honestly felt like we might not survive! Lol silly I know.
 
Chloe with a get well gift/coloring page from her friend, Abby. So sweet!
 
Sick as ever on Halloween night, she didn't end up going trick or treating. I still got her dressed up as a monster, though. Rawr! ;)

Ketogenic Diet Attempt

Oh where to start? It was back in May when I met a lovely lady and her granddaughter at the post office. She was gushing over Chloe in her wheelchair and said her granddaughter had once been in a wheelchair just like Chloe's! The little girl with her was walking so I asked about the granddaughter in the wheelchair and she explained that it was the girl with her and she no longer needed a wheelchair! Of course I wanted more details and she happily explained. Her granddaughter had a seizure disorder and was non-verbal, non-mobile, and blind at the age of 6 despite many treatments including multiple surgeries, meds, and even experimental treatment outside of the country. Her mom decided to try the ketogenic diet as a last resort. Within months, she was sitting up and starting to talk. At the time we met, she was walking with braces (so well that I didn't even notice), was able to see with just glasses, and was speaking as though she had never had any problems with speech whatsoever. I was floored! Of course the grandma thought I should look into the diet for Chloe. I honestly didn't think it would be something Dr. Lloyd would go for, but decided to ask him about it. I guess part of me was afraid to get my hopes up. Well we saw Dr. Lloyd not long afterwards and he said that, yes, since Chloe is g-tube fed now, it would be worth trying! He was teary eyed and seemed so hopeful for us! The next step was meeting with a nutritionist and reading a book. The nutritionist was also super excited to try this for Chloe. I was still tentative, but hopeful. Then I read the recommended book and hope overfilled my heart! One of the chapters was about what makes a patient an ideal candidate and potential "super responder" to the diet. There were 5 bullet points and Chloe met 3 of them!!! I finally decided to be optimistic about the possibility that this could actually help Chloe! Even if it just helped her hold her head up without a neck brace or use her hands better...what an impact that could make in our lives!  
 

They put her inpatient for the implementation phase the first week of October. They said she would be inpatient for 2 days, maybe 4 at the most. She was perfectly content as long as Barney was on the ipad.


We went on walks around the hospital every day. Chloe liked the music room the very best. I would play the piano for her and we were usually the only ones in there. I loved this shine on wall and wish I'd had my better camera and that she had been in a cuter outfit and smiled. Oh to live in a perfect world!
 

So things went well the first couple of days. She went into ketosis more quickly than kids usually do. We thought that was a good thing. But then she ended up being too ketotic and was very sick and her labs were crazy, especially her carbon dioxide levels. She kept throwing up and was so so sick! I've never felt more awful because I felt like she was perfectly fine and I put her in this position for selfish motives. That's crazy, I know, but that's how I felt. It was just awful seeing her that way. And it didn't help that my pregnancy nausea was particularly awful while we were there. Also event though Oby had kidney stone surgery just a week before, it hadn't helped and he was sick. Also, while we were in the hospital, we found out he needed another surgery on the other side. Sigh. When it rains....
 

We ultimately decided to take her off the diet completely. We had tried tweaking the percentage for a few days, but she just was so sick and couldn't pull out of it. The process of getting back on a normal diet was a bit of a roller coaster ride.. She'd be perfectly happy one minute and completely miserable the next. And emotionally, I was very disappointed about giving up the idea that the diet would help.
 
 

Ultimately, getting IV fluids helped bring her body out of the funk she was in. And the doctors said they thought the way her body responded indicated that she had been in a state of chronic dehydration. Thru suggested that we start giving her liquids throughout the night and once she started to tolerate a lot more liquids each day, we could (and they stressed, should) try the diet again. So we didn't take it off the table, but we pushed it to the edge of the table for now.
 

She was happy as ever by the time we left. I had never loved her more.
 
 

September 2013

Please note...this is my first time attempting to blog on the ipad so please forgive any formatting errors!


Here are Chloe, my mom, and my grandpa at a Chambers family reunion. It was held in Malad, Idaho where my grandpa lives. It was fun getting together. I love my family! Grandpa has a pretty view off his porch.

 

In September, I reached a point of frustration with Chloe's beautiful blonde locks! Yes, her hair was so cute and curly right out of the tub. But the back of it would be a matted mess within minutes because she was either laying on it or leaning against it. Then the front was always falling in her face during therapy or just during the day at school. Her therapists and teacher/assistants were always asking me to just pull her hair up so it didn't get in the way. So... gulp... I had Taylor cut it into a pixie cut! I was in mourning for at least a few days, but slowly I've learned to love her with this haircut and almost can't imagine going back to the way it was. She's cute no matter what, though!


A cute pic of Chloe with her friend from church, Ammorie (I might be spelling that wrong). She's my friend, Katie's, little girl and they loved playing dress up while Katie and I got to visit. Fun!

9.02.2013

Labor Day Loungers

Isn't this the sweetest picture of my lovies relaxing in the hammock at the cabin? We went for a quick visit over Labor Day weekend and I'm so glad we did. The weather was just divine and the leaves are barely starting to change. Everywhere you looked, you could see mostly green aspen leaves with little splashes of yellow. I don't know how anyone lives where there aren't all 4 seasons. The changes renew my soul and are evidence of divinity. Gettin' pretty deep over a simple hammock pic, but whaddaya do? haha

8.27.2013

First Grader!

Chloe is in first grade! She is gone all day! I was worried about her being fed with the g-tube at school, but we did a training with the teacher and all of the assistants the week before school started and everyone did great and was comfortable with the process. Chloe is grumpy when she gets home because she wants to still be at school! So I'll put my hurt mom feelings aside and just celebrate that she is enjoying school so much. I'm enjoying myself as well, getting lots of little projects done before the baby gets here. Win-win!

This is Chloe's brand new grasshopper green wheelchair. Isn't it cute?! Sigh. Well, unfortunately, the headrest does NOT work for her. Her little head is so spastic and we thought the i2i headrest was going to be a perfect, but less bulky, replacement for the blue neck brace she had been using. Well, it might be a size thing, but it might also just not be the right fit. Either way, she's back to using her old wheelchair (which she is largely grown out of) along with the blue neck brace that I was so excited to put away and never see again. Meanwhile, this beautiful, shiny, new wheelchair is sitting unused in our house while I try to get the wheelchair vendor to get us equipment that is functional for Chloe. I'm bummed about the whole thing, but know it will work out....not sure when, but it WILL work out!

8.18.2013

Mount Rushmore Roadrip

We were able to take a road trip with my parents and brother's family to Mount Rushmore. We covered a LOT of country in just 5 days and saw a lot of really cool things! It was a fun and memorable vacation and a great way to end the summer! These pictures are out of order, but oh well! ;)

Bella, Jake, Wyatt, Aspen, and Chloe with Fred Flintstone at Bedrock City

This is possibly one of my favorite pictures of all time! Oby and I were doing a road trip selfie while we were at Little Bighorn Battlefield. When I looked at the picture after taking it, I saw that my dad had photo bombed us! I cannot explain how funny this is to me. I had no idea Dad even knew what a photo bomb was, let alone how to do one! Even his hands are spot on. It kills me!!!

This is Travis' car ahead of ours driving through the Black Hills with our first view of Mount Rushmore

Oby and Chloe on the train ride at Bedrock City. This was likely Chloe's very favorite part of the entire trip. She squealed the entire time!!!

Katrina and Travis' road trip selfie - cute :)

Chloe and Oby checking out the tortoises at Reptile Gardens. Pretty awesome.

Oby and Chloe at Bear Country, USA. This was my favorite part of the trip - it was fascinating to me and I loved every second of it!

Oby and Chloe checking out the snakes at Reptile Gardens. I couldn't believe how much Chloe loved the snakes, very unexpected.

Jake, Wyatt, Bella, Chloe, and Aspen (with Bugsy!) in the saloon where Wild Bill Hickock was murdered in the historic town, Deadwood. We all loved Deadwood, it was lots of fun and a beautiful night!

This is one of my favorite pictures from the trip. My two sweethearts in front of Mount Rushmore. Perfect.

The whole crew on a corner in Deadwood

Aspen, Jake, Bella, Katrina, Porter, Wyatt, Chloe, and Oby with the tortoises. It was so awesome that they would let us so close to them and even encouraged the kids to rub their necks. Everyone loved it!

On the train in Bedrock City. So fun.

Tuckered out in the hotel

Me and my love at Mount Rushmore

Grammy and Chloe in Deadwood

The kids in front of Reptile Gardens

Chloe with the train conductor at Bedrock City

Chloe swimming with the boys at the hotel

A bear chilling on some logs at Bear Country, USA. Super awesome.

Oby and Wyatt with some, uh, interesting photo props in Deadwood ;)

Even though I look like a COW in this picture, I absolutely LOVE it! My mom, brother, dad, and me (with Sam) at Mount Rushmore.

Chloe at the Mount Rushmore museum in front of this amazing quote - touches my heart.