Tuesday, January 1, 2013

So long, 2012. You was awesome!

Well, 2012 is in the bag and what a year it was.  We’ve had camp-outs and reunions and parades and birthday parties and new cousins born and hikes and stay-cations and vacations.  
Snow day!
I don't know what to say about this but I love this girl.
 Alli has loved being in a gymnastic/ dance class this year.  She’s SUPER flexible really strong and she has done very well learning new moves.  She has been loving the first grade- learning lots and getting to be with her friends at school.  She has a great eye and continues to produce wonderful artwork and really cool craft projects.  She’s very thoughtful of her brother and sisters and does a lot to help each of them everyday.  She’s cute and funny and loves to always be doing.

Alli making a Porsche GT3 look even better
Danny the dog, who we get to hang out with sometimes.  Now with blue chalk!
Brooke bossing around a stuffed dog

 Jake has had another fantastic year.  He’s doing well in Kindergarten and loving it.  He loves building things with legos and rigging up strings and things for his Batman and Spider-man figures to climb and fly around on.  If Alli has an eye for ‘what is’ which is a wonderful gift which she applies in her drawings all the time, Jake has an eye for ‘what else’. He can take the most mundane thing and turn it into a habitat or a transporter for his action figures.  It’s fun to watch a person who sees so much more than a cardboard box when he looks at a cardboard box.  
Super hero birthday party!

'Cause why not
Uncle John, Jake and Grandpa Davis at the NF walk which was so much fun.
Jake was weaned from his anti-seizure med this summer and hasn’t had any seizures!  Somebody say “Hallelujah”!  A few weeks ago Jake had another MRI.  Then we did a mini-tour to talk to his doctors about the results.  The MRI write-up described a small tumor in his cheek but the oncologist couldn’t see it.  But last week when we were with Jake’s geneticist (how do we love thee, let us count the ways) he pulled up the images, found the spot and pointed it out to us.  Imagine a black-and-white kid holding a white pea between his cheek and his lower jaw.  The geneticist then pulled up Jake’s MRI frm six months earlier and there was the spot- which even the MRI tech had missed originally.  The spot of the tumor didn’t appear to have grown in size or brightness in the intervening time, so the geneticist said it was probably not to worry about.  So we’re doing that.  No really, we are.  Which, if you know ME very well, is a miracle.  Andrea is much more even of keel.   


Jim and Dad at Hemingway's grave site in Ketchum, ID. This was a fun trip.
Timponogos cave and cousins and cousins and cousins
Buckets o' fun
 Lindsey is cute as a button and switches back-and-forth quickly from silly to hillarious.  Her little voice adds to the hilarity of the funny things she says.  My personal favorite is the way she’ll come up to me ten times a day and say “I lllllove ya, Dad.”  She talks fast, so the other day when she said “YouKnowInPussInBootsWhereThere’sThatSillyCatAndHeSays ‘AwwwwwwwwWWWWWwwwww!’”  it put the whole family on the floor halfway through dinner.  Linny likes to dress herself.  She doesn’t see the sense in wearing matching socks and shoes though.  Which is fine, it just makes pairing-up the socks kinda tricky when we do the laundry.  The other day she wore a rubber boot on one foot and a sparkly ballet slipper on the other.  'Cause why not.  She is learning about letters and numbers and she loves to make up songs.

This is soooo Linny

Linny and the Hello Kitty Cupcakes for her Birthday party.
A Raspberry Linny-pop

Brooke is starting to get skinny, which makes me a little sad.  I will miss having a fat baby around the house to tickle.  Brooke is learning lots of words- it’s funny, though, she doesn’t really get the difference between ‘Dad’ and ‘Mom’- she uses them totally interchangeably.  Which is cute, but it would be nice at 4 a.m. for us to be able to say definitively, “she’s calling for YOU”.   Among her favorite words are ‘fun’ and ‘shoes’ and ‘apple’.  
Uncaptionable but undeniably cute
Part-time gig
Showing the lady bugs how cute gets done.
Autumn hike in Centerville.
Dam engineers
Halloween and cousins and cousins and cousins
Sledding with cousins
Cousin power
We're told this was like that when they got there.
Mmm hmm.
This has come to be known as 'The Altercation'
We saw Ariel at Disneyland
Gooofy, Goofier and Goofiest!
The mouse himself
So, 2012 has been a good one.  Here’s hoping that 13 is a lucky number for us and for you as well.  Happy New Year!

Sunday, June 24, 2012

NF Walk 2012 'S gonna be awesome!

The Morgan Davises Represent

Hey everybody. We're working with CTF again this year to put together another fund-raising walk. If you came last year, thanks!  The walk was a ton of fun and a big success.  This year's walk is going to be bigger and better than last year's and we hope you can come.

The date is Saturday, August 25th. There's registration and before-the-walk fun starting at 8 o'clock but the walk itself will begin at 9 a.m. This year it's going to be at Sugar House Park.  To learn more or to register, click here.  (Be sure to join Team Jakers)  If you have questions about how much fun it is going to be, call us. We'll totally talk you into it.

The walk is being organized through The Children's Tumor Foundation (CTF). They are the largest funder of Neurofibromatosis research (aside from the government). They do good things, they're run well and we have no reservations about recommending them to you.

These guys know it's gonna be awesome
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June 2012

Here's a contradictory statement for you. 'I love ______ but I'm so glad we haven't seen her in such a long time.' You can probably only feel that way about good doctors. Maybe plumbers too.

We had an awesome spring with lots of fun and good things going on. Now it's June and we're making the rounds again to do testing and see Jake's doctors. A few weeks ago the Neurologist (who is wicked-smart and super-nice) said that things look good and that unless an EEG shows something unsettling, we will probably be able to begin taking Jake off his anti-seizure medication. We also had another MRI and the awesome Oncologist with the funny name said that the tumor on Jake's optic nerve appears unchanged and everything else looks good too. We'll do the EEG this coming week and see what we see. Fingers crossed. Update: I'm so slow at posting stuff- We did the EEG, Jake did really well for the person administering the EEG. We haven't got results yet, but will soon.

Jake has been having more headaches lately, he had three this week. But other than that, or in-spite of that, he's doing very well.

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Here's a quick run-down of what's going on with the us-ens.

Ride 'em, Cowgirl!
Alli is loving the time off from school. She has been doing swimming lessons for the last few weeks and will likely sprout gills soon. She loves being in the water and gets stronger and more confident at her swimming all the time. Alli works on art and craft projects almost everyday and she's good. She (all of a sudden) became great at riding a bicycle and she patrols our street regularly. She's cute and I like her.

Beats by Jake
Jake has also been doing swimming lessons. He dives in and goes around with a surprising lack of trepidation- a credit, I think, to his teacher. Jake loves having friends over to play at our house and he often uses that as his gauge of an awesome or an average day. “Jake, how was your day?”
 “Fun. I got to play with ____!” I didn't mention this before, mostly because it was completely overwhelming, but a handful of my friends at work chipped-in and bought Jake an iPad a few months ago. He uses it to practice his speech therapy and to practice spelling and math. Its also good for his small-muscle control. He also lets me play Angry Birds on it. Jake has met all the benchmarks for the transition from preschool to kindergarten and he's excited to start going to “Alli's school” in the fall.

Linny takes a turn in the washing machine.  (Not really)
Lindsey is growing up. She's getting more and more wordy. Her sentences are getting longer. She'll come up to me and tell me little jokes. “Dad, my mouth did make a big burp! Hahahah!” She gets a very serious face when she's telling us something and then when she notices that we are smiling at her because she's so freakin' cute, her serious face snaps into a smiley face and she laughs a little then goes skipping off like a blonde rock across a pond. She's very cute and very busy. She doesn't take an afternoon nap anymore and that has really increased her daily mileage.
Brookie doing what Brookie does best
Brooke is 15 months old and growing up very fast. She can walk all over, although she still wants to be carried around by Andrea almost all day. She likes to read books. She also likes to clear the books off the shelves. Hasn't shown much interest in re-stocking those shelves, but we'll get there. She likes to have little play-fights with me and will often waddle up to me and start slapping my leg. If I don't come down so she can slap my face she gets mad. It's kind of a catch-22 for me. She's pretty-much irresistible though and I kind of deserve to be slapped most the time anyways. So.

If we don't see you hardly ever, we miss you and we hope you are having a fun summer. If we do see you fairly often, we love you. And thanks! You're probably part of why we're having such a fun summer.   

Wednesday, May 16, 2012

The preschool program and the letters in Jake's body

Tonight was Jake's preschool program / graduation. He has loved being in Ms. Stephanie's school and we were really excited to see him and the other kids do their songs. Jake has been practicing the line he'd been asked to deliver, he's been practicing the ASL alphabet and things like that.

But this afternoon another one of his headaches came. It must have been a bad one because at 4 o'clock he just wanted to go to bed. Annie gave him some children's Tylenol and he went down for a nap. I woke him up at 6 o'clock to eat and get ready for his program and you could just tell that he was hurting. As he stared at his dinner he said "Why did I get a headache?" I told him that sometimes he gets headaches if he eats too much candy. Annie said "But you didn't really have hardly any today, did you." I said "Sometimes you can get a headache if you are playing and you bonk your head. Did you bonk your head today?"
     "No" he said.
I looked at Annie and said, "Should we talk about the other thing now?" We've never thought to hide his condition from Jake, I was really just checking our combined courage level. Then I said "There is something that is different about Jake's body. It is different from Dad's body, or Mom's or Alli's or Linny's or Brooke's. You have a thing that is called NF. Have you heard mom and dad talk about NF before?"
"NF is just a coupple letters, N – F, that is short for a big word that says what is different about Jake's body."
     "I wish my body didn't have any letters."
"Me too, kid. But I think that the NF does give you headaches sometimes and I wish it didn't."

We talked a little about the preschool program to try to get him excited about going and after some careful prodding, we were off. We got to the program a few minutes late and Jake was still teary-eyed when we got there, but after a few minutes he warmed up and was happy to be there with his friends. He shook the maraccas, and delivered his line and smiled for his pictures. He did great. The kids were all cute and good and funny, just like you want kids to be.

Real quick, can I just say that if you have never had the impulse to clone the people in your neighborhood so that you could fill the world with awesome, caring, friendly, giving people, you should move to my neighborhood. Cause that is what we've got going on over here. Jake loves the kids in his class, and they love him. He gets invited to go over to other kids' houses to play and the moms are always so good to him. These people are amazing and I love them.

After the thing we came home and Jake's head was still hurting. He sat on our bed for a while then he just wanted to go to sleep. He got his jammies on and climbed into his bed. I went in to tuck him in and he said "I wish that my headache did not hurt." I said I wished so too. He held up his hand and made a zero with his thick, beautiful fingers and said "I wish I had this many letters N – F." I managed to keep my poker face but it took a little effort. I sang him his songs and kissed his fuzzy head good-night.

Thursday, November 24, 2011

Thanksgiving 2011

Lots to be thankful for, over here. We've got gobs of friends who never seem to mind helping us out with the this-and-that's that come up so often. We've got family galore who are always helping us with kids and errands and borrowing us stuff and feeding us. In particular, Annie's Mom, Sandy. She watches our kids at least once a week. And often, when we come back from wherever, the pile of dishes has disappeared from the sink and the clean laundry has been folded. The kids love her and she is always so nonchalant about saving the world. (All in a day's work, citizen.) And I know she does the same for her other children all the time.
We love our neighborhood, and the good people who we get to be around at church and at school and at Dick's (those are our major hang-outs).
Annie and I love each other, we have fun together and we work well together. Our kids are beautiful and fun and good.
We met with the oncologist on Monday to get the results of Bud's MRI. The news is all good. She said that the tumor we've been watching for the last year-and-a-half hasn't changed and that there were no new tumors. That is exactly what we (and probably you) have been praying for. She told us that she wanted to move Jake from having MRIs every three months to having them every six months. That is a good thing for a lot of reasons; it indicates to us that they're comfortable that the tumor on the optic nerve isn't growing. It will spare us the emotional ramp-up that we do to 'MRI day'. It will save Jake and Annie and I (frankly) of the hassle of MRI day. And it'll save us some coin.
Then, on Tuesday, we met with Dr. Viskochil, the geneticist. He is very warm and nice. He actually reminds me of the Dalai Lama, if the Dalai Lama were a world-class geneticist. (Maybe he is a reincarnated Dalai Lama? Is that how that works?) Anyways. We hadn't told anyone this yet, but about a month ago we spotted some little bumps on Jake's tummy. There are about a dozen of them and they're about the size of the little sprinkles you sometimes get on a cupcake. Not the long sprinkles- if that's what your thinking- but the little spheres. And while you're thinking of it, make it a chocolate cupcake, not a white one. Anyways, Jake's got these little bumps on his tummy and we were worried that they might be first of the neurofibroma bumps. But, the oncologist, her assistant, and Dr. V all said that they're not. They each figured they are some viral thing that kids (having the sanitation habits of wolves) sometimes get. They're not contagious, they're not worth treating. They don't hurt, or itch and they'll just go away sometime. It was a relief to hear that. Not that bumps on the tummy are the end of the world, but this NF thing kind of has phases and we were thinking that we were years away from that phase.
Dr. V also felt all over Jake for bumps beginning below the skin. He told us all about how they first appear, and he said that he didn't feel ANY on Jake. So that was also a very good thing.

This week Alli took a dive and whacked her chin on the wood floor. She's got a nice bruise going there, but its going to be fine. It looks pretty tuff though. None of the kids on the playground are likely to try to start anything with her for the next little while.  She's smart and beautiful and fun.

Jake is always busy making inventions for his “man” out of legos, tupperware, rope and other spare toys. He has had the same little man, about the size of a lego man, which is from a GeoTrax set, for the last 8-9 months. He goes everywhere and it is nothing short of a miracle that he hasn't been permanently lost yet. That day may have come yesterday. While playing in a huge pile of leaves, Jake threw some leaves up into the air and his man went with. I searched and searched as I have through sand, bushes, dirt and rivers to find the same man, but I could not find him. Hopefully he will resurface. Luckliy he has more lego men that will fill the gap.  UPDATE 3/21/12:  Jake's man was found- thanks to the efforts of our neighbor, Velle Anderson.  Velle turned that leaf pile three times, but he found Jake's man.  Then...Jake lost the man again.  At Grandpa Holman's.  For three weeks.  Then he found him again, just last night.  So.

Linny made poop in the potty yesterday. I could go on and on about how that is a very good thing, but all that poop talk would make the internet a less civilized place. Linny is busy and funny and cute.  She is learning new words all the time and often when Annie or I finishes saying something there is the sound of a squeaky little echo rattling off our last few words. last few words.

Brooke has started caterpillaring her way around the front room. She'll be crawling before Christmas. Her red hair is getting longer, but not so long that it's not wispy and fun. She's cute.

Happy Thanksgiving, everybody.

Friday, November 11, 2011

Rocket School

We got the word a while ago that the school district is going to let Jake stay in the preschool for the rest of the year. He has been going to two different preschools because we were not sure if he would get to stay with the school district. We were in there under a trial basis, so that the special-ed teacher (who we so love) and the speech therapist (who is nice) and the physical therapist (who is very good) could do more in-depth evaluations of Jake's abilities and difficulties.  It's a mixed-bag of emotions. It is hard to swallow seeing all of the things that your child is behind in- in black and white. Typed out like they will be there forever.
At the same time, we are grateful for specialists that recognize where he needs help and are genuinely trying to give him the help that he needs. Jake loves going to his “rocket” school, and doesn't mind working with the teachers and therapists to get the extra help. It's dad and mom who are trying to process it all. We struggle everyday to make the balance between not letting Jake off too easy, and pushing him to the point of failure. We will constantly be trying to find the balance there.
We are very grateful that Jake is able to stay at the district preschool. It is an answer to prayers. We feel like he is able to get more specialized help, and we are learning ways to better help Jake at home. Jake will still attend his "Zoo" school as well. He loves them both. The journey continues, but with a little more support! THANKS!

Tuesday, November 1, 2011

Halloween 2011

We had a great Halloween.  The kids were cute and happy, the weather was gorgeous and our neighbors rock!

Brookie in her eat'n chair

Lin-Lin, who is always ready for a party

Alli, Jake and Lindsey at the carnival at the Elementary School

Brooke, Dad and Jake

Jake, the inventor's latest creation


Good sisters

Cute kids

Mom and the kids and some of the cousin ones
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