We Got the Juice

This morning is one for the books.

I had two very life-changing phone calls which have allowed me to be so appreciative of all I have.

Phone call number one was from Shriner's Hospital in Salt Lake City. I turned in an application a couple of weeks ago for therapy and orthopedic services for Deak. I wasn't really sure he'd qualify, but I have been so frustrated with the amount of services given to Deak through the state, that I thought it was worth a shot. Shriner's offers services to people, not based on income level like most other options, but based off the child's need. The woman who called me this morning called to let me know that Deak was preliminarily accepted and wanted to know which Doctors we would like. Shriner's offers FREE physical, occupational, speech (to cleft palate children), and sensory motor therapy - and it is the best in Utah period. Once Deak is evaluated there, they will determine what services he needs and he will be given these services for life. I cried with Joy.

Phone call number two was from the pharmaceutical company who Deak's doctor requested we go through for his Growth Hormone Treatment. The woman who I spoke with there let me know that Deakon's claim had been denied by our insurance agency (no surprise there, it usually has to go through an appeal or two) - BUT... they have a FREE program which will provide us with four months of growth hormone treatment until they sort out our insurance claim. NO reimbursement necessary. Basically, Deak will get to start juicing next week. I cried with Joy again.

When I thought my day couldn't get any better, my cute little Deakon decided to up the anty by attempting to crawl. He started this a few days ago...He actually gets up on all fours and moves his knees all by himself. He kind-of nose dives forward, but he is getting it. I sat and watched him in awe for a minute, just so amazed at how much harder he has to work, and how okay with it he is. He understands his plan is a little different and not only accepts it...he is happy. I wish I could capture the joy I feel when I see him push and try and fight against all odds...and win. I wish I could allow others to feel what I feel when I see him drink from a straw, or hold a cup, or comb his hair. To paraphrase a quote from the video 99 Balloons (click only if tissues are near), " The joy I feel for my son's accomplishment of living this month (he was diagnosed with Trisomy 18) I can imagine only compares to the joy a mother might feel the day her son graduates from Harvard or becomes President." And it truly does - and I get to feel that every day. It feels as if life has purpose, as if small issues don't matter, and it feels as if I get a glimpse of the joy I will feel when I leave this earth. Although I have had my share of pain, as we all have, I still don't feel deserving of the joy my children bring into my life. I am not sure I will ever feel adequate enough to have Deakon here, but I can promise the gratitude in my heart will never leave.

I just feel so blessed.

The Twenty-Fourth

We really have never celebrated the 24th of July in our little family like dutiful Utahn's. Blair works and the rest of us usually watch the parade on TV and do something small. This year I decided I wanted the kids to celebrate by playing Pioneer games and eating Pioneer food. Blair quickly shot down my idea by replying, "Pioneer food sucks and I don't even have Pioneer ancestors." He even said it while we were in Primary.

*Note - I do appreciate Pioneers and have Pioneer ancestory. No disrespect intended :)
Okay...Plan number 2 involved going to my sister Kelli's brother and sister in law's home in American Fork. They live in a private circle which puts on a carnival and awesome fireworks show. Oh, and they don't cook Pioneer food.
Plan #2 prevailed.
To make a long story short, Kelli married the youngest son of a family who we grew up with in San Diego. They also ended up moving back to Utah...and the rest is history. So, we know their family and like being able to spend time with them.

Kelli and two of her many sister in laws'. Mary, the one on the right was hosting us :)

I swear I don't drug my kids...whoa.

Deak had a rough night. He had spent the day swimming with friends and cousins and was beat. This picture pretty much sums up his attitude.

Too bad he wasnt' as happy as Cam.

Ab and Taylor

Cute Maddi

My sister, Nikki pitched to Shane (the husband host:) to see if she could strike him out. She did pretty good...I think it might've been rigged because a haircut was up for the bounty. My dad was the catcher. It had to of brought him back to the many hours spent crouched on the ground, or sitting on a bucket, catching our pitches, and watching us fetch our own wild throws :)

My mom and me, and a full calorie Mtn. Dew. It was either that or the beer cooler. I needed something to take the edge off Deak's attitude.
I sacrificed Blair's funny face for the best picture of me. Trust me, the other two pictures were not cute. When I told Blair which one was going on the blog he said "Whatever" and shook his head. Sorry Dude.

Ab in the bouncy house.

The firework's were awesome...so I hear. Deak HATED them and literally shook to his core. It was too much for him and pushed him over the edge. So, Deak and I hung out inside. Maybe next year. (Notice Blair's happy look, We were a little tired :)
Wow, that was a lot of pictures. Sorry People. Consider it our testament to Family History on Pioneer Day, I guess. I had to sneak it in somehow.

A few little problems...

Today as I have been home, I have realized I have a few problems. Granted, they are not big problems - but problems indeed.

#1
Deak had his first meeting with his speech pathologist today - you know, the lady who is supposed to help him talk. She literally sat on my floor for 40 minutes and said two words. She then had the audacity to ask if "Deakon was always this quiet?" I think it might be helpful if someone tells her she would be better at her job if she started maybe even whispering.

#2
It's been stated in previous posts that I am a little bit of a shopper. It's true. But, as of late, I am trying to be better and limit my purchases to stores like Target, rather than Anthropologie. I thought it was a good idea until I began buying items like Step Up to Dance 2 - Hit the Streets. (To my credit, if you bought that and College Roadtrip you received a $10 gift card). Now, I cannot return Step up 2 Dance because College Roadtrip has been opened, and I quickly spent my $10 gift card the next day. So, basically, if there are any of you dying to see the movie, let me know. We can learn new dance moves together.
Don't be embarrassed, embrace it - or call me if you don't dare to post it on the comments :)
*It does contain the music video "Low" by Flowrider. Now, if that doesn't entice you, I don't know what will.

#3
Reading is good for you right? I am not so sure anymore. I have been trying to read the whole Twilight series thing the past few days because I know the new one is coming out. For some reason, I feel a lot of pressure to be excited for the new one just like the rest of the world. I have to admit, the books are good. I am halfway through the third one, and it is really entertaining. But, I am seriously losing sleep (and if you are a blog reader, you have a little bit of an idea how lovely I am when I am losing sleep - not pretty) partly due to the fact that I am reading, and partly due to the fact that in my dreams all my friends are now part monster. I even napped today to catch up, and I never nap. Feeling tired is worse than being illiterate maybe. Or, maybe I should set some boundaries and do something different like shop or watch my movie or watch my kids. Whatever works.

#4
I am out of Diet Coke. Enough Said.

Abby's Birthday Celebration #54

Abby scored this year with the party extravaganza's. Because we were in Texas over her actual day of birth...she got to have a family party, day of birth party, and friend party. At first glance, it appeared as if Abby was so sweet to share her birth date with Deak and the conference...at second glance, I realized she is no idiot. Ab raked in presents and cake three times. Seriously, when am I going to learn?

For her family party we went bowling and to Pace's. Except I couldn't bowl because I think I broke my finger in our disappointing last softball game a couple weeks ago. Blair just laughs when I show him though, and reminds me of the time I thought I had Anthrax.

In Texas Ab scored by eating a $5,000 dinner at Rainforest Cafe (Seriously it is a money hoarding pit). She also scored by just happening to "pass by" the Disney Store (another money hoarding pit).

Back home with friends, Ab had a Hannah Montana Rock Star Party. I can't complain much about this one; the kids were all truly so well-behaved and darling. Ab did have an issue when she did not win "Pass the microphone," but she survived. Her friends were so kind to her and brought her very thoughtful and sweet gifts. Abby is a lucky girl to have so many fun friends in our neighborhood and at her school. She is gone sun up to sun down, roaming the streets, and causing problems of which I pretend don't happen, while I sit at home drinking Diet Coke. (Just kidding mostly).

Deak got in on the action with my cute sis Maddi.

We had ice cream "microphones." Original right? :) Mostly, easy.
(Ab singing "Nobody's Perfect" into the microphone. I think her friend Alyssa, next to her, wondered what the hell she was doing.)

Blair and I underestimated the strength and coordination of 6 year olds and the pinata was knocked out cold in two hits. After that we just let the rest of the 18 kids take a turn beating it with a metal bat. (Maybe that had something to do with the calmness).

All in all...Abby is definitely a celebrated six year old. But, we think she deserves it.

"Long Live the Alamo"

We are so lucky to be a part of an awesome group of people who are involved with the Chromosome 18 Registry and Research Society (aka...Deak's syndrome people). Every year they put on an amazing conference which involves updates on the latest research for our kids, fabulous doctors who have devoted their lives to helping our kids, and really amazing people who are parents and friends of our kids. This year the conference was in San Antonio, Texas where the actual research center is located.

I have never been to Texas, and was really excited to see if Texas was actually like it is on TV.

It is.

*I saw real spurs that could kill someone in the lobby of the hotel. The man wearing them was meeting his girlfriend who said while greeting him, "I even put on some lipstick for you."

*The police wear cowboy hats and boots.

*And, they seriously pledge allegiance to the Texas flag in school each morning.

The people who live there really like Texas, which is good. I just didn't understand the situation entirely until I made a "faux pas" in the Alamo.

Being tourists in a new city, we wanted to see the Alamo, which they say is the number one tourist attraction in the country. The funny part is, the Alamo is now located directly across the street from "Ripley's Believe or Not Museum" and the "Wax Museum." It is pretty commercialized considering all the love the native Texans have for it. Apparently Texas has passed a law declaring the Alamo sacred ground, so you have to be quiet while touring it. We were inside, trying to be quiet, and I turned to Blair and said, "Long Live the Alamo!" He just looked at me, (along with everyone else around me) and smiled and shook his head. He then said, "Jenny, it is "Remember the Alamo." Same difference right? Guess not. I was a little worried I might be asked to be in a shoot off or something when I walked out. Luckily, they did not, I don't own a gun (which may have been against the law in Texas).

On the "touristy" side...We did some fun things together.

Riding the boat for the Riverwalk tour.

Eating at Rainforest Cafe for Abby's birthday.

Eating at Hard Rock Cafe, which we discovered Deakon LOVES because of the music playing.

(Playing air guitar :)

And mostly, just being together.

On a more serious side (actually dying at the Alamo would've been serious I guess),we got the opportunity to meet another five families who have a child with Ring 18 syndrome. The children are amazing.

Caleb, who is going into third grade and mainstreamed with other students. He can read at grade level and write. He is very bright. (You can see he is writing in the picture).

This year we were excited because there were little ones! Last year Deak was the only little child...here are a few friends.

Emily. She is an amazing little girl who has been through so much. She just recovered from having a surgery which helped her hip dysplasia. She is also blind and has a harder time hearing. Her parents are amazing and probably the most positive people I have ever met.

There were six of us compared with the hundred or so other families there whose children have a different syndrome associated with Chromosome 18. It feels like home when we meet the families. We may have only known each other a few minutes, but we feel so intimately connected with the depth of understanding we have for each other's situations and the love we have for our children. I am motivated, inspired and committed to doing better and more for the research that will help Deak and future children, after spending time with the families. Abby also has such a good time. She gets to connect with other siblings who understand what it is like to have a brother/sister with special needs. She also gets to go to a fabulous day camp while we attend the sessions. We never want to leave, and cry when parting ways with the families we have only known a few days. I cannot express how much it means to have these children and families in our lives. They are amazing people and I learn so much from them.

"Long live Ring 18."

Happy 16th, oops, 6th Birthday Abs!!

My Abby....

Where do I start? There are so many things that make Ab unique and special. When Abby was a toddler, her pediatrician would comment, "That Abigail is unique." He was right then and now. I know, looking back, that Abby was given to me first to be my rock. She has gotten me through some of my toughest moments, and her faith and sense of depth have never wavered. Abby is extremely perceptive of people's feelings and notices everything. The thing I admire most about Abby is her ability to let what other's think of her roll off her shoulders. When something happens to her, she is sad a minute, but lets it go and forgives very quickly. She doesn't take it personally. I am continually learning from her.

Her actual birthday falls over the dates when we will be in Texas attending Deak's Chromosome 18 conference. Ab even has to share her birthday with Deakon, and she is okay with it. Today she and I had a fun day together eating lunch at Arby's, getting her toes and fingers painted, and shopping at Target. I love hanging out with her, and hope she always wants to hang out with me.

Tonight we are going to celebrate with family bowling and opening presents. Abby's number one wish this birthday is to get an ipod. She really is 16 stuck in a tiny little body.

Happy Birthday my girl.

The Fourth

I love the fourth of July. It is probably one of my favorite holidays - mostly because it usually involves swimming and eating 14 meals. Both of which are things I like.

This year Ab was in the Kaysville Parade and loved it. When she came by we cheered and yelled and expected a huge grin and wave. Yea right, she was totally embarrassed...(but I think she secretly liked it.)

Deak loved the parade because it involved his three favorite things in the world: Free food, loud firetrucks and water. On the way to lunch with my family afterwards, he gibbered the entire way. I would like to think he was telling us all about the fun time he had. Blair even joined in the festivities by flashing the teenage boy carrying beads (he earned a handful), and taking off his shirt with the kids in the water (probably better him than me).

After a fun lunch and parade with family, we headed to a way fun swim party and BBQ with friends. Where again, Blair spent most of the time playing with the kids in the water.

After that...we chilled around home with some fun friends, ate our 14th meal, and did some driveway fireworks (which Abby thought were "too loud").

Such a fun day.

Good News for a Good Boy

I debated for a little while whether or not to share this with the Blog, but decided I wanted to be able to experience this with those who know and love my boy.

We had an amazing Doctor's appointment with Deak's endocrinologist this past Monday. Trust me, amazing and doctor are not usually words I place together in a sentence, but this was nothing short of extra amazing.

Many of you know we have been in the process of getting Growth Hormone Replacement Treatment for Deak for about nine months. Deak just isn't growing or gaining weight (he hasn't gained an ounce in a year, and less than 1/4 inch in 9 months), so it pretty obvious to us that he is in need of Growth Hormone treatment. Growth issues are pretty common with kids with Chromosome 18 abnormalities, so it hasn't been something super unexpected, it has just been a long process. To quickly sum up some research, it has also been proven recently that in kids who are growth hormone deficient, that cognitive ability (ie. IQ Scores) can increase (sometimes up to 30 points) when the growth hormone is replaced. Growth Hormones are also responsible for the production of Myelin in the brain, which speeds up the rate at which the neurons travel.

Back to Monday....

We got the results of an MRI of Deak's brain. I wasn't really anticipating anything with these results. Sadly, I just sometimes view these things almost "professionally", rather than get my hopes up only to be let down. I think my heart has just been through so much. The MRI results were the last thing Dr. Foster brought up, and I felt my body tense up. I had forgotten we were even going to discuss them. Any of you who have been through testing medically or cognitively, with your children might understand the nervousness. Obviously my love doesn't change with the test results, but I just want the freaking science to show what I believe my son to be capable of.

Often it does not.

Dr. Foster brought the results in, with a copy for me (she has gotten to know me a little :), and said, "There is nothing abnormal with Deakon's brain."

Just like that.

I looked at her and said, "I had a feeling that's how it was going to turn out." It was kind-of a lie. I hadn't allowed myself to have that much hope.

Then, in a very undoctorly fashion, she turned with what I think was a small tear and said, "I am just so happy for you."

I told you...Amazing.

The MRI showed us that Deak is in need of growth hormone treatment even more than we thought. His brain is not mylenating properly, and needs the treatment to stimulate production. The really good news is that as soon as we start, it will be beneficial. Nothing has been lost.

I also feel like I need to say that we are not naive to think that Deak will not have his share of struggles. The ring in his chromosome will still affect him in some ways, but it will not stop him. To quote Deak's geneticist this week, "I have a feeling that this little guy is going to keep on surprising us."

I have a feeling he is right, and this time I am not lying.