Thursday, October 30, 2008

Copy and Paste...

Sorry for doing it. I just wanted to get the request for prayers etc out there to everyone.

From Hadley's site:

Wednesday, October 29, 2008 4:30pm


We're still here plugging along. It's been another hard week. My Papa Bishop passed away Friday night. He was ready to go and has been ill for quite some time...but, my heart is still quite broken. Do you ever just feel like 'it' never ends? I'm feeling a little emotionally trampled these days. I'm sure things will get 'better'. I hope.

Hadley has had good days and bad days...and days that seem stable when compared to the past several weeks. Her alertness is sort of hit or miss, her nail beds are blue...sometimes up to her first knuckle. Her days and nights are all confused. She doesn't like being moved around a lot...but tolerates it like a champ. She is such a sweet girl.

I have a special prayer request today. I haven't shared this with very many people because I was afraid that I was just being 'paranoid' mom who's in a vulnerable emotional place...but, Keegan needs our prayers. Well, our whole family does. Keegan is losing hearing and vision in his right eye and ear. He has failed both vision and hearing exams. We are quite concerned with this and have already seen our family doctor. There is a genetic disorder that we had discussed with Hadley's doctors early on in her treatment but never really explored. It is called Neurofibromatosis.

What Is NF?
Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.
Types Of Neurofibromatosis
Types Of Neurofibromatosis

Neurofibromatosis (NF) has been classified into three distinct types: NF1, NF2 and Schwannomatosis.

Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.

Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.

At this point we are still hoping to rule it out...but it will be a process. We are working on the best way to get a referral in to see the Genetics Specialists at Doernbechers/OHSU and in the meantime we have an appointment scheduled to see a pediatric ophthalmologist in Lake Oswego on the 17th. Our doctor's office is also working on getting us in to a pediatric ENT. None of this is being taken lightly and while that 'worries' me I am also very grateful it's being handled so quickly. My poor boy is complaining of headaches almost daily now (probably because of his vision issues) and seems frustrated with school work. That is hard because he loves school and learning. For his to struggle is so out of the norm. Anyway, please pray for our family. It's hard not to be terrified...and my heart is just broken in pieces. We haven't talked to Keegan about any of this yet. He is such a worrier and with all that is going on with Hadley well, I just don't want to traumatize the poor little guy. He will very likely be having an MRI of the brain sometime soon...but, we're hoping to meet with the genetics specialists first. Anyway, please keep this hush hush around our boys for the time being. They really don't need one more thing to worry about.

Baby Hope is thriving in our home. We all love her so much. She is a really fun little kitten with lots of personality. I'm so glad she found her way to us. =) She is funny and sweet and adorable and gives us an extra little someone to love on and giggle over. We're thankful for her.

Thank you for stopping by to check in on us and for praying for our girl and our family.

With Faith, Hope and Love,

Sunday, October 19, 2008

Pretty Somethings.

Hadley and I love us some funky cuteness. One of my cousin's fave designers is having a giveaway that I would love to win. =) a reply to enter yourself...and let her know that I sent you. =)

Friday, October 17, 2008


I don't want to be here anymore, in limbo that is. I feel like we should be out living it up. Doing all of Hadley's favorite things. Running through Disneyland, swinging all day, floating in a warm pool somewhere...maybe jumping on the next plane to Kauai. But, Hadley's condition keeps us pretty close to home...not too much activity or stimulation. I feel like we're just sitting around...waiting. I don't like it one bit. It doesn't feel right. I want for her to be able to do all of her favorite things. I want to experience them with her...but, I don't want her to have to 'pay' for it with extra pain and anxiety. Over a month ago our doctors told us she may not live more than a couple of days. That was a month ago...she is still here...but not really 'here'. It's just not fair.

I guess I'm just having a 'we got jipped' day. =(

The sun is out...maybe we'll plant some fall flowers..when she wakes up...

Wednesday, October 8, 2008

What'd he say?...

So, you know that song that you love but can never quite catch all the lyrics to? Or the song you loved back *gasp* BEFORE the INTERNET and never knew the lyrics to? Well, if you're anything like me you either wind up singing the wrong lyrics or add in a little 'sexy watermelon' action (this is much more tame than it sounds). Anyhow, if you're reading this blog you probably know that our family needs a few extra chuckles right now. Here is one place that I find mine. I thought I would be a good friend and share. =)

Hint: Go to and search for "Misheard Lyrics _________________(name of your fave song)".

Here are a few of my faves. =) You'll have to scroll down to the bottom of this page and pause the project playlist player. *sorry*

A little background on Yellow Ledbetter

And because I was (who am I kidding I STILL sing it wrong) guilty of mishearing the 'bathroom on the right' lyric. =) Who sings about bad moons rising anyway. All I want to know is where the darned bathroom is. *snort*

Have a great day. =)

Tuesday, October 7, 2008

The Ladies Man...

Brandon has been doing the school time shuttle lately. Today, he came home with a pretty funny story. Liam is the baby of the family. He can get away with a lot because he is SO stinkin' adorable and cuddly. So, when his teacher, our beloved Mrs Woods who has taught both our boys now, pulled Brandon aside this afternoon and stated that she was having a bit of an issue he was worried...and rightly so. Liam has been known to go so far as using alter egos to carry out his naughtiest activities. Cyrus and baby goo goo are his old standbys but, as he's gotten older he's been known to Smeagle (aka Gollum) being extremely mischievous. Well, as it turns out Liam's mere presence is to blame. His dashing good looks and sweet disposition have more than his mama's heart melting. The girls are actually fighting over who's going to sit next to him, who's his best friend etc. Apparently poor Mrs Woods had to break up three 'fights' just TODAY. Oh my goodness. All I have to say is...Girls, girls don't you know that none of you will ever be good enough for my sweet baby boy. *snort* All Brandon had to say on the subject was "I just hope he can keep it up for another 15+ years." Oh my.

Jog-A-Thon '08

Last wednesday was the annual jog-a-thon at the boy's school. Their school only has two fundraisers (the the children are really involved in) each year. I am pleased as punch that one is a jog-a-thon and the other is a read-a-thon. These are the kind of fundraisers I can get behind. I'm not gonna lie...I do enjoy me a good cookie dough sale or three but, this is so much better for the kids (and for me). =)

Liam has been looking forward to this jog-a-thon for 2 years. Keegan participated when he was in Jr Kindergarten and Liam was SO envious. I was a little afraid that Liam wouldn't want to go to school anymore after the jog-a-thon because it's all he talked about for SO long. Fear not. Here we are, a week later, and he is still enjoying school. =)

So, on to my awesome boys. First, Hadley was having a relatively good day so Brandon and Hadley and I were able attend and cheer on a few of our favorite kiddos. =) Now, are you ready for this? My little I have my daddy's short legs, asthma, and at nearly five an audible heart murmur, Liam ran NINE 1/4 mile laps in 30 minutes. That's two and a quarter miles folks!!! Seriously?!? I know. He's a super hero. =) Keegan, my poor little flat footed boy who ran it in converse complained of his feet hurting the whole time but, still managed to knock out a mile and a quarter (5 laps). Woot Woot!

So, most of their pledges were 'flat' pledges (meaning they weren't per lap). They each wound up raising over $80. Not too shabby for having parents who totally neglected to help them find sponsors! Poor guys.

Anyway, this is a fun event and I wanted to share a bit. =) I love these stinky boys! =)