Friday, October 26, 2018

Achoo!

Some good news about Katie and sneezes - it's always been an issue when she sneezes and is sitting at a table, her head hits the table. 😩  So, I have noticed in the past few weeks that she has sneezed and not hit her tray on her chair, nice! 

She liked sitting at our island in a bar stool the few times I put her there and now don't feel as worried about her hitting her head on our granite, although still a bit leery of course.  Baby steps.  I'll be ready to grab her head if she sneezes!

I hope to be posting next week about another issue (bigger than sneezes) that could help her a lot.  Waiting to hear back from the doc.  Happy Friday!  

Wednesday, August 22, 2018

Summer

Ooooh, three months to the day of my last post.  Where have I been?

So, this summer has been a bit nuts since I didn't have a day program to send Katie to.  It actually went well though, and she kept busy with therapies and seeing friends occasionally etc... and thank GOD I have a great sitter! 💗Molly💗

Katie started Middle School about three weeks ago and it has been hell!👹 I think it's a combination of having to wake her up early at 6 am (she sleeps like, 11 hours!) and a new school and teacher, and then top it off with a ton of crazy monsoons!  Dust and wind and rain and changes to the barometric pressure... she's been cranky at home but fine at school - whatever, kid!  I was giving her ibuprofen and then tried allergy medicine because who knows what's really wrong?  She was pointing to her throat and head and sometimes her stomach, so throw in a bit of Pepto Bismol... it's been misery.

I was on the airplane flying home from Colorado a few weeks ago (just me) and a girl sitting next to me who had a fussy baby put some essential oils on him and he calmed down immediately.  I have used them before but you know, you kind of forget about them. I told her about Katie and how she was acting up and she told me what to use on her.  So when I got home I called my friend who sells these and she hooked me up with one for allergies - a lemon, peppermint, lavender combo and also straight lavender for calming.

As soon as Katie got home that day I put her in the tub, still cranky as can be.  Not happy and hitting her hands on things, in the tub, sometimes me.  Got her out, dried her off, and put the allergy combo on her feet and a drop in her mouth and slathered some lavender oil on her chest and amazingly within five minutes she was just fine, playing on the floor with not a care in the world.  And she's been great ever since! No more medicine lately just these oils, it's really incredible.

 Our business is seasonal and gets very busy during monsoon season.  We keep an eye on the weather and this season has had a lot of storms and busier than any other year, lots of rain and wind.  I do the data entry and billing (and I look outside!) so I know how busy it is, and this weather change seems to affect these kids with special needs.

 I am so glad I met that girl on the plane and that I have a great friend here who rushed over those oils, thanks Leslie!  Katie now grabs the rollerball of the oil and rubs it on herself, she's a fan!  And a happy kid again.  Whew.




  

Tuesday, May 22, 2018

CBD

Oh Man, I can't catch up!😑

Not sure if it's because of Teacher Appreciation week last week, or the fact that Katie was off an extra week due to Red 4 Ed the week before that, or maybe it's just that Paul and I are trying to watch the last season of Lost (been watching since January) and staying up too late!  Yes I know we are 14 years behind the times but what a good series! I'm going to be so sad when it's over.  I think John Locke is my favorite...

Katie is doing well.  Our new thing we are trying is CBD Oil.  It is not any kind of drug and contains no THC, but it is from "the" plant. Anyone can buy it, and it seems to be helping her movements not be as jerky and she seems happier overall.  We'll see what comes of that.  She is also sleeping well but she usually does anyway.  If your child has seizures it is supposed to help that, too.

This is going to be short today but thought I'd better let all my superfans know we are still alive and kicking! 😂 

Friday, March 23, 2018

Birthday

Katie turned 12, it's going by so fast!

She is doing great and sees the chiropractor every week, which I thinks helps her feel good and in alignment (she cracks a lot!) and seems to be helping her jaw issue that I freaked out about over Christmas break - her bite was way off.  Still not perfect but so much better.  Happy kid!

Thursday, March 1, 2018

February

Where did February go?  Oh yeah, I was sick with a terrible cold and then Katie got sick also, and I think the whole month of February was spent sleeping and coughing and blowing noses!

Nothing worse than being sick and needing to sleep (A LOT!) and then your kid gets sick too.  So hard!  Thank God Paul could help out but he works (a lot) and it was just really rough. Poor Katie had 4 days of not eating anything at all and I was putting my Isagenix shake down her with a syringe.  Thankfully she has her appetite back!

We both went to the doctor and it was just a bad bad cold, no flu but it was horrible. Of course Paul had no flu shot and hasn't had one cough or sniffle, figures!   

So we are pretty much back to normal and I am sure many of you can relate, but having a non-verbal child being sick while you are sick was the worst.  Hoping this never happens again and I may just celebrate being well again tonight 🍷


Thursday, January 11, 2018

Bite

Katie's bite has been off for awhile, like  a year or so.  Around Christmas I was looking at her teeth and noticed that one bottom tooth was turning a little.  I freaked out and started looking up who might see her for this - for her bite being off.  I had already just recently asked her dentist and asked her previous dentist six months ago, and both said there was nothing to do about it. 

Her bite had all of the sudden gotten more extremely "off" than it had been the last year so I started Googling who might be able to help her.  I saw a video of a chiropractor adjusting a kid's jaw so I started looking up pediatric chiropractors and found one who also does neuro-chiropractic services and her office is like a kid's gym, perfect!  

I took Katie to her right away (that day) and she asked if Katie had had a growth spurt recently. Ummm... YEAH!!!!!! Nothing fits the kid!  She said something to the effect of the growth spurt causing this, that if she is not in the right alignment and grows, she uses that bite to feel more balanced and grounded - something like that.  Don't quote me!  I ran this by my physical therapist neighbor and she said that totally made sense. 

So Dr. Kleckner adjusted Katie and man, was she out of alignment!  Bones cracking like crazy!  We have been back since and there is less cracking, which is great, her body is becoming in better alignment.  She also incorporates some neuro stuff which is pretty interesting and even told me that the white lines on Katie's nails means she is low in Zinc.  So I give her liquid zinc and it must taste pretty good cause she sucks it down.  The lines seem to be growing out!  The zinc may help her sensory issues too and how amazing would it be to not have a screaming kid every time I brush her teeth?

  I love this chiropractor! http://www.kidsrising.com/  Check out her website, good info! 

So she did not crack Katie's jaw like the guy in the video I watched, but she thinks her jaw will get better as she is better aligned.  Here is a picture of her bite a few weeks ago, and it is definitely not this bad now. And also her fingernails with the white lines. 




Wednesday, January 10, 2018

winter pic

I have so much to talk about but it might have to wait another day!  In the meantime...

 As long as I have my furry vest on it's all good. 



Wednesday, December 20, 2017

Fundraiser

Update on my fundraiser!  If you haven't seen my video click on this link: http://bit.ly/2BU2ATi  

Almost $10,000 Raised

December 20, 2017
A huge thank you to everyone for your thoughtfulness and generosity during this holiday season! 

Because of you, we have raised nearly $10,000 to support Dr. Swanson’s research. We are hoping to make our goal of $25,000 by the end of the year. Donations are 100% tax deductible, and the gifts go directly to Dr. Swanson’s research to discover how Katie's genetic alteration causes nervous systems to develop in slightly different patterns. He will tackle this difficult challenge in part supported by your generous donations.   

This research has the potential to shed light on this rare gene mutation not only for Katie, but for others as well. Thank you again! 

Happy Holidays,  

The Murphys

Tuesday, December 12, 2017

Mice

Great news!  We have mice!  It took over a year but Dr. Swanson was able to produce a mouse with Katie's same mutation and then breed it, so now he has lots of Katie mice. 

One of the first tests they conducted was to have a normal (wildtype) mouse and a Katie mouse walk along the edge of a cage.  He explains below about the struggles the mutated mouse has which just blows me away!  I can't get over that these mice are actually showing a symptom in movement like Kate has.  So incredible!  See pictures below. 

Also, if you haven't seen my 2 minute video here it is: http://bit.ly/2C78BsP

From Dr. Swanson: 


"Figuring out the cellular and circuit rearrangements that result from rare genetic variants like Katie's is challenging and requires the use of model systems like mice. Mice are by far the most common animal model for human genetic disorders in part because their genome can be modified reliably with powerful editing technology. We introduced into mice the same nucleotide variant that Katie has in her GRIK2 gene. We call the this new strain "GluK2(A657T)" mice. The A and T simply refers to the change in amino acid structure (A/alanine to T/threonine) of the GluK2 protein that results from the GRIK2​ genetic variation. We expect the amino acid change to fundamentally alter the signaling of kainate receptors that contain the GluK2 protein, which are important for early development of the central nervous system.

What were we hoping to see in the GluK2(A657T) mice? Most importantly, we were hoping that the mice would show some of the same behaviors that Katie exhibits. If this occurs, then we say the mouse strain has "face validity" - that is, it actually does model some aspects of the human disorder. We always have to keep in mind that mice are not humans, and mouse brains are not nearly as complex and powerful as human brains. Not all mouse models show face validity for their associated human disorders. Thankfully, many mouse models do recapitulate features of human genetic disorders, which is what in part makes them powerful research tools. We can use behavioral tests to guide us to the parts of the brain that can be most effectively analyzed for changes in nervous system development.

The first set of data we have obtained from the GluK2(A657T) mice suggest that they do indeed have face validity for at least one aspect of Katie's genetic disorder. These pictures show that the GluK2(A657T) mice have a difficult time performing a routine task - walking along the edge of their cage. Walking on the "ledge" requires balance, muscle strength, and control of fine and coarse muscles. The fact that the GluK2(A657T) mice perform poorly on this simple task suggests that they have a motor disorder known as "ataxia" - like Katie.

We are just at the beginning of this analysis but are very encouraged by these data. Our hope and expectation is that the GluK2(A657T) mice will lead us to new insights into the neurodevelopmental basis of Katie's disorder as well as in other children with similar genetic disruptions."






Tuesday, October 31, 2017

Halloween and Video

Happy Halloween!

I've been a bit busy with the following - please check out my video link!

 http://bit.ly/2z1dUsL



making a mummy pumpkin











And a cute video of Katie dressed up! Cowgirl