Special Needs

Wow this week has been a bit of a challenge for me. I don't necessarily feel comfortable blogging about it all but my mind and heart just need to speak.

Some things in life are hard. Some things in life are just not fun. You wouldn't wish them on anyone else and you don't wish them on you or your family. But because they are part of your normal they aren't that bad. They are just part of your life, your routine. They are something you have everyday and something that you thrive through. You don't just endure but live vibrantly through them. You know people who have things worse. You know people who have things better. But you have your life, your normal. And that can be just as hard as someone who has it worse or just as happy as someone who has it better. All you can do is take your normal and make it happy, and take the parts of life that are hard and not fun and do the best you can with them.

We are trying to figure out the best way to take care of Luke's special needs. Not with him. The funny thing is it has nothing to do with him. He is doing great. It will not change one thing about his day to day life or the way we teach him or spend time with him. But we are trying to figure out what to do so that he can get everything he needs. It is stressful to decide what is best for your child. Sometimes I don't feel qualified to make those type of decisions. But he will grow and he will be not only be fine, he will be amazing. It is just the process of making the best choices for him and our family now that weighs on me. We have a very "special" insurance :-) and it can complicate a lot of our options. I know once we get things figured out and make good choices everything will be exactly as it should be. It's just the process of getting there I hate. Sometimes I feel like I am drowning in seas of paperwork. I am so grateful for all the programs that are available to help (Children with Special Health Care Needs, PEIP, SSI, Medicaid D, Shriners, Insurance, etc.) But because Luke's condition is undiagnosed it makes it very difficult to get assistance. We have never felt the need to press for a diagnosis. But we need some assistance and there for we need to get a diagnosis. To get a diagnosis we need more testing and testing requires money, time, and very hard days for my little man. It is also most likely that it will put us right back here where we started. With an amazingly affectionate little boy who just wants to play.

Quality Time and Low Quality Pictures

My goodness. The past couple weeks have been wonderful. I wish I had a camera to document it all. But our camera is critically ill and we are no longer borrowing Kimberly's. But Yay for Andrew's Droid which allows us to take some pictures of our adventures. Sorry for the lower quality, but yippee for pictures.

Luke is doing so well. There has been little to no vomit for over a week now and Luke has started to get his appetite back. We still need to go back in for an MRI. But over all he is doing really well.

Temple Square

So here are some of Luke's current adventures. Last Sunday was Andrew's Mom's last week in the Mormon Tabernacle Choir. It has been so fun to have her in the choir and it is Luk'es favorite part of General conference. So last Sunday was her last Music and the Spoken Word. And her family was able to come early, be introduced and watch her be recognized in front of the choir. It was so fun. We had to be on temple square around 7 am and listened to their pre-run-through rehearsal. Luke was amazing. And by amazing I mean that he was able to sit quietly for over and hour in the very echo-y tabernacle. I was so proud. He sat with his grandpa for the first half and on his daddies lap for the second half. He was being so cute. He stood up on the bench when they announced her grand children and clapped loudly and yayed after each number. He was to cute, it made my day. But when it was time for the real broadcast to begin Luke would have no more of this sitting business. we went into the little cry-room in the back and he was just so miserable I decided to walk him around during the actual performance. Luke loves temple square. He loves that he can run and he LOVES the flowers. (Flowers are Luke's new fascination) So Luke and I went into the visitors center, where Luke charmed the sister missionaries. He chased them around wanting to give them hugs and kisses. We watched the end of the broadcast in the theater and Luke Loved to yell out "Grandma" each time he saw her on the screen. So basically Luke ran around and had the time of his life.

Beautiful Weather!

I am so so so happy it is warm outside. Our weather here in Provo, has consisted of warm days, rainy days, a little bit of hail and a lot of wind. So it has been perfect, I love the wind because it reminds me of Idaho. I love the rain because it reminds me of Florida. And I love the warm weather because it means we get to play outside! ( I could, however do with out the hail) Luke loves going to the park. He likes to swing, play on the jungle gym, and run around the restroom. I kid you not. There is a paved walkway that goes all around the restrooms and he loves to run around it and watch you chase him. Here he is which his daddy on the 6th or 7th lap :-)

Bridal Veil Falls

We love this walk. It is short, beautiful, and paved. Luke can run a long beside us and point to the many "puppies". And his favorite part is not the waterfall at the end but the rocks you can through at the water fall. It is so fun to have such beautiful places so close to our home. We decided we should take advantage of them more. So think we are planning to go up their again for FHE tomorrow. Yay for more puppies and rocks :-)

Family

Yes, I know this picture is terrible but it was the only one I had. My dad came into town this weekend to stay with us. (my mom decided to stay home with my brother because she had just been up here the week before) But I loved having him here. Two of my cousin's graduated on Saturday and so both the Davis Family (my dad's sister) and the Bates family (my dad's brother) where in town to celebrate. We got to play together and I forgot how much I adore them. Basically my family is hilarious and I loved every minute I got to spend with them.

Happy Haircuts

Amazing Lunch + Happy Haircut + No Puke = Wonderful Day

So usually we cut Luke's hair in a buzz cut at home. But I really didn't want to fight that battle and he really needed a haircut so... We went to Cookie Cutters in Lehi. It's like 20 mins away but my sister-in-law had recommended it so I thought I would give it a chance. It was wonderful! We walked in and Luke picked out his favorite show (Mickey Mouse Clubhouse).

He picked out a blue car and was amazing. He has been a little nervous around new people since we got out of the hospital but he really loved the girl who cut his hair. Man o man it made me happy.

Utah Valley Regional Medical Center

Our family had another adventure this week. Luke has been compulsively vomiting for over two weeks. We where waiting it out to see if it could possibly be the worlds longest stomach flu but alas it wasn't. And Tuesday we ended up in the hospital for testing with intense dehydration. Poor little guy. I didn't take any pictures from the first couple days in the hospital. His little sickly look hurt my heart, so all of these pictures are from the last day. Isn't he a hansom trooper.So after lots and lots of needles, a cathater, some x-rays, and lots and lots of IV fluids Luke started feeling better. Both the playroom and Mickey Mouse Club House made the week endurable :-)So here is the rundown. Luke has some sort of condition that makes him intensely through up. It is happening anywhere from 1 -5 times a day (for what will be 3 weeks). And Luke being the strong willed person he is, is refusing liquids. Except milk (which makes the voimiting worse)


Good news: It is not a virus or and infection. X-rays of his stomach looked good. His blood count is good. He does not have muscular dystrophy. His urine is clean... and so on :-)

So where do we go from here? Do everything we can to prevent dyhydration and another hospitall stay. Finish the metabolic testing. Go in for an MRI next week and consult neurology, watch his weight and hope this is some unique phase Luke will grow out of. Thank you so much for your calls and prayers.

The hardest part: He is not contagious, he wants to get out and play. But after the vomit all over Target yesterday we are having to learn how to be better prepared for new unique situation we are in :-)

Wants vs. needs

Dear world, I want this.
Only $137.99 on overstock. hmmmmm

Lets get all better

I pretty much have the most amazing kid ever. He has taught me alot and really I don't know if there is a more kind-hearted child on the face of the Earth. He tries to be obedient and is amazing at sharing and pointing to Mickey. (Finding Mickey is pretty much Luke's favorite game in the whole world.) He had a rough beginning but has been doing better than Andrew and I could have ever hoped. He has been healthy for over 8 months, and we made it through our first winter with out any respiratory problems :-) Yay for no RSV!!!!!! Because of this we think he is growing out of his asthma and I can't tell you how happy that makes me. As far as his development and therapy, I am proud of him. He is my little trooper and continues to try, even when things are scary and uncomfortable. Basically we have been in a really great place. Well I have. I rejoice in his successes and don't really pay attention to milestones anymore. I use to have such a difficult time with comments people would make, or reading articles that talk about milestones and trying to justify Luke's differences to strangers. But I have finally gotten to the point where I say "Yep he's two", "Yea, he does look a little tired", and " Yep he is tall for his age." But I have learned not to compare. Man o man, was this a lesson I needed to learn. I am an absolutely horrible "comparer". I am trying to be better at this in other aspects of my life as well. I think most women have difficulty with comparing, and it is such a destructive habit. I am happy to be learning and changing.

Basically life is just really wonderful for me and my little family. I am so happy for Luke to have a brother. I am so happy to be pregnant (I love being pregnant). I am overjoyed with my dear husband and with the opportunity he has to have a job he enjoys. Life is good. And I am so reluctant to let that change although I know I don't always have a choice. :-)
Luke has been having some difficulties with eating lately and we have been doing what we can to keep things down and keep our house from smelling like vomit. Unfortunately it is a battle I have been losing. Blah don't come to my house it stinks :-) But I just wish I could make things easier, make him feel better and make it all go away. We are going in for a longer consultation next monday to see what our game plan should be. With his hypotonia there is an laundry list of a million things it could be. It could be as simple as the worlds longest stomach flu or a little acid reflux. Or it could mean lots more testing and things I don't really want to deal with. But we will see and I know it is all ok.

Happy Easter.

Andrew and I have been married for 3 years and we have never really done much for Easter. So this Easter I thought it would be fun to surprise Andrew and Luke and do a Big Easter Surprise. Growing up, Easter Baskets came on Saturday morning. That was the day we did all things Easter Egg/Bunny-ish. On Sunday we did Easter dinner and LDS General Conference, etc. I liked it. Having a huge basket of candy made it much easier for an 8 year old to stay focused on the Saturday sessions of conference.

So this year began with a week of hiding my plans from my cute husband and setting everything up for Saturday Morning. It was so so fun. I got up a couple hours early made the smoothie and set everything up. This is a little movie on how the morning went. It was so fun. I didn't mean to but we this Easter had almost an Alice in Wonderland theme. The basket outside Andrew's door said "Use Me" and this is what our counter top looked like. The RedBox movie was ALICE. It is a SciFi adaptation of Alice in Wonderland. Andrew and I have wanted to see it for a long time. We watched it in between conference sessions and made ourselves ill off of Easter Candy.

Later Andrew and I decorated eggs. Andrew got this awesome metallic egg decorating kit in his Easter Basket. It was actually much harder than it looked. I liked the pink metallic foil, to bad it didn't like me. I was super sad that Andrew's egg turned out better than mine. He has a talent with the dye. I also made an egg that Andrew said looked like the image of the Virgin Guadalupe, but it broke, sad day. Andrew named his Egg "The Charlie Brown Egg" I named mine "The Lavender Brown Egg" Which do you like better?

And today we enjoyed General conference, homemade chicken pot pie, family time! It was an absolutely wonderful Easter.

Legally Blonde

A Couple weeks ago Andrew and I went to see Legally Blonde the Musical in Salt Lake. Basically it was amazing and made me very happy. It is such a fun high energy musical that you can't help but smile. We had amazingly fantastic seats (thanks to my cute husband) and went with our dear friends Megan and Ben which made it even better. Love it. I can't wait for Lion King, Mary Poppins, and Spamalot. (Yay for tours that come to Utah) Oh this is Megan trying to talk to Baby Hill. I LOVE her:-)