More BIG News

Yesterday, Keir and I received news that we've been waiting for since January of 2004.  I took Conner to see a geneticist from Children's Hospital, hoping, once again to get some answers. Conner saw a geneticist at about 2 months old, and we found nothing - but our current pediatrician thought we should try again since technology has advanced quite a bit since then, and EVERY doctor we see truly believes Conner has a genetic condition - there are just too many things going on to be a coincidence.  Dr. Manchester told me that he is pretty sure Conner has Kabuki Syndrome, but that he wants to wait until the lab work is back before making an official diagnosis. Keir and I, of course, spent the evening, and late into the night reading everything we could about Kabuki Syndrome on the internet. After doing so, we are probably more convinced than the geneticist that this is indeed what Conner has. While reading the stories of the many families and children, Keir and I kept looking at each other with absolute amazement - if felt like we were reading our own story over and over.  Not to mention all the pictures of the children that felt like we were looking at pictures of Conner.  The similarities are AMAZING.  Since this is a very rare syndrome, with no definitive test yet for diagnosing, it is diagnosed by a geneticist according to the recognition of certain characteristics.  Conner has almost every characteristic: 

• long palpebral fissures/eye length (check)
  
• prominent/thick eyelashes (check)
• arched eyebrows with sparse outer half (check)
• prominent and misshapen ears (check)
• low set and/or rotated ears (check, check)
• frequent ear infections, usually requiring tubes (check, check)
• depressed nasal tip/flat nasal bridge (check, check)
• intellectual disability (check - although he is VERY smart, just has taken longer to learn things most kids pick up quickly on their own.)
• persistent finger fetal pads (check)
• Hypotonia/low muscle tone (check)
• Hyperextensible joints (check)
• Feeding difficulties, usually requiring g-tubes (check, check)
• Hearing impaired, usually requiring aides (check, check)
• Heart defects (check - Conner has a bicuspid aortic valve)
• Small mouth, very high arched palate (check, check)
• Missing/unusually shaped teeth (check)
• Sensory integration dysfunction (check)
• Flat feet, usually needing orthotics or braces (check, check)
• Undescended testicle (check - still need to have this surgery...) 
• Strabismus, usually requiring surgery (check, check)

The characteristics Conner does not have (knock on wood) are:

• Seizures
• Kidney anomalies
• Skeletal abnormalities (short 5th finger, scoliosis) 
• short stature (they think Conner even has this one, but I do not think he is short...he is supposedly in the 10% range for height for a five year old - but I won't get into what I think of those charts.)
• Rapid weight gain during puberty, sometimes causing obesity

After reading many stories of other children, I've been inspired to finish the journal of Conner's story - stay tuned, this may take a while.  Many stories we read spoke of the disappointment when first diagnosed.  We do not have this.  After over FIVE YEARS of wondering WHY, WHY, WHY, we finally have answers, and know what is going on with sweet Conner.

   

During our research last night, we came across a Dr. studying the syndrome, who is trying to identify the genetic etiology, and is looking for participants in his research.  Guess where he is? Yep, Boston!  Coincidence??

This is how COOL Lindsay is...

...today Conner and Cayden were supposed to go to their friend Isabel's birthday party at the park.  Isabel and her family are moving to England--in fact her Dad is already there, and Isabel and her Mom are staying with some friends before they leave--so it's also like a going away party.  When we woke up this morning it was raining (I really wish it would stop raining already!  Its been WEEKS!!).  Lindsay felt bad that Isabel's party would be cancelled so she got on the phone and called Isabel's Mom.  Lindsay offered up our house for the party--nine kids, plus our kids, plus Moms.  Never mind that we have friends coming in to town the next day that we need to get ready for.  Never mind the chaos.  Never mind the potential aftermath.  How cool is that?  Isn't that way cool!?!  Just like that Lindsay went out of her way to help a friend in need.  Just plain'ol love and sympathy for a friend.

So see, just like I said a month or so ago...we're so lucky to have a great Mom like Lindsay!  Just think how great our world would be if more people did these king of things.

Thanks for being a great example to me and the kid's Lindsay!!  We love you!!

XOXOXOXOXO

Friends, Jobs, Moving, and Tears

We've been talking to the boys about the possibility of moving, and they are very excited.  They have been so excited, that I've been worried that maybe they do not quite understand that it will be very far away, and that their best friends, school, etc. will not be there. It almost seems like they think we are going on a fun, exciting vacation.  Despite my concern that they didn't understand, I did not bring it up.  I wanted to keep it a happy positive experience for them.  (I am crying enough on my own!)  Well, I underestimated them.  This morning Conner walked up to me and said, "Mom, I am really going to miss Charlie!"  I wanted to make sure I knew what he was referring to, so I asked, "what?"  Conner responded, "when we move far away, I am going to miss Charlie!"  I have been crying ever since.  (Good thing several of their friends, including Charlie, Gracen, Marlo & Brody all have family on the east coast!)

So, I guess I better give a little more information now, even though I am already fighting back the tears and can hardly see what I am typing.  

The facts are:

1. Keir will be done with the house he is building in a month or so.

2. The next project, he already did permits for is no longer going to happen - not a surprise in this economic climate.

3. Many of our friends, who also work in construction do not have work right now.

4. We are not in a position (unlike many who live in the Aspen Valley) to go on without a job.

5. California (where we would love to go back to!) has even fewer job opportunities right now.

6. The company Keir works for is based in Wellesley, MA (Boston area), has work there for him, and Keir has loved working with them.

Pretty simple, right?  I've heard many times, "you move where the job is!" and understand that statement, and know that even having an offer right now is a huge blessing.  So, we know what we need to do, we feel good about it, right about it, and we are preparing to do it.  But, this does not make it easy.  I've been telling everyone that we are still looking for work here, and the truth is that Keir has explored many leads in the last few weeks, but none have led to anything more than a "possible" job to "possibly" start in the near future.  Nothing we want to bank on.  So, I still may say that we are looking for something here, but my gut says we are going, I feel it is the right thing for us, and I know we are going - I just say we are still looking here to avoid saying "we are moving" because then I would just break down in tears, and become a complete mess. Lame, I know.  I am a wimp when it comes to stuff like this.  Sorry.

On a happier note, there are many positive things about the move I must focus on to try and keep the tears from flowing:

• The schools out there are AMAZING!
  
• The medical care is also AMAZING! (no more driving 3-4 hours to take Conner to the doctor, and who knows, maybe some smart med student out there will be able to diagnose Conner?!?!)
• The cost of a plane ticket from CA to MA is actually CHEAPER than to Aspen!  And, you CAN get a direct flight - no such thing as a direct flight to/from Aspen.
• We will no longer debate whether to drive or fly to visit family in CA.
• All of you will have a place to stay when you visit Boston!
• We will live within 20 minutes of the Boston temple - making our goal to attend more often much easier!
• Keir is excited about the work and the company - which counts for a whole lot!

I apologize if this is news to you, and you are finding out about our move through our blog. Lame, I know - but again, I am bad at this stuff.  And, frankly, I already have a crying headache, so spending hours on the phone telling everyone is out of the question.  So, if you have more positives to add to my list, feel free to comment and share with us!  Despite the sad tone of this post we are truly excited about this next adventure for our family. . . . we just need to mourn a bit, since we have made some really great life-long friends in CO, and we are moving even farther away from many life-long friends AND family in CA.

Why do things you know are right, still have to be so sad and hard?  (Dad, I know the answer, we are learning and growing...I just had to ask.)

Sleepovers!

When Keir and I went out of town a couple weeks ago, Conner and Cayden had their first sleepovers to give Aunt Tiffy a little break from four kids.  We have such amazing friends, and we are so blessed!  One night Cayden spent with his friend Gracen, and this was his prayer at bedtime, as reported to me by Gracen's mom:

"Dear Heavenly Father,

Thank you that I could spend the night with Gracen tonight, 

and could you please make it two nights? . . . ."

The next night both boys spent the night with Charlie, and had a blast.  They made sure to tell me all of the details, like, chocolate chips on their pancakes, playing in the sandbox, sleeping together in Charlie's room, etc.  Cayden actually spent the next night as well, while Conner went home and had a fun night with Tiffany, DJ and Allie.

Well, last night we invited Charlie over to our house to have a sleepover, and they once again had a blast.  We pulled out the "magic bed" (trundle) and all three slept in Conner and Cayden's room.  I did have to lay in there for a little while, but they were pretty good.  Charlie even went to church with us in the morning, and it was neat to see the boys showing Charlie how to be reverent in church.  We tried to get a picture of all the kids, but of course, Allie fell asleep in the car, and the boys cannot all stand still and look at the camera at the same time - I think it is physically impossible!

Garage Sale Saturday

Saturday was our neighborhood garage sale, and boy did we have a lot of junk (or treasures depending on the person) to unload!  We made $700, and only spent 3 hours Friday evening collecting stuff around the house, crawl space, etc. and 4 hours Saturday morning gettin' rid of it.  If only we had spent more time preparing . . . . I keep looking around the house thinking, oh, I could have sold that too, we never use it!  Maybe we will have to do another one this summer.  Allie LOVED her first donut, and screamed the rest of the day when she saw the box, but couldn't have another!

I was pretty worried that the boys would protest about some of the toys we were selling, but they were pretty good.  Cayden picked one thing he just couldn't let go of and then they were actually pretty excited to let other kids have a chance to play with toys they hadn't used in a while.  A success!

Bling, again

Yes, we pierced Allison's ears back in January, but when she went in for emergency surgery, they removed the earrings, and of course, the holes closed up very quickly.  She was a trooper - they did both ears at the same time (which I highly recommend, and wouldn't do it any other way!), she screamed for a second, and then enjoyed her first lollipop, happy as could be!

New Hat

No matter how many times I try, Allie will not leave any of the cute clips or bows in her hair!  My desire to put them in (and, yes, I still try almost every day!) has changed from "just to look cute" into a necessity since her bangs are long enough that they actually hang down in her eyes.

I've posted about this before, but today, I thought I'd share that I think Allie is just messing with my mind, since she put on Cayden's jammie pants as a hat, and wore it around, very proud, for quite a while today.  She thought she was so funny and cute.  And, having it on her head obviously did not bother her.