Sydneys EEG

  Sydney and I headed in for her EEG.  She did pretty good while they hooker her up to all the probes.  They were doing the EEG to see if she was having small seizures that we were unaware of.  So she stayed on all her medications as normal. 

 My little Q-tip

 If anyone doesn't know about Snap'n Style dolls they are wonderful.  They entertained her for hours each day.

For those that don't know how this EEG works here it is .. . She has about 15 or so little probes glued to her head then wrapped in the q-tip hat to help stay in place.  Each probe reads a different part of the brain that does different things.  She is attached to a computer with is on the back wall  and the black thing on the cealing videos sound and movie.  The lights stay on the entire time and if there is an "event" you push a button and the lights turn brighter and tv shuts off and it puts a marker on the computer for the Dr. to look at. Pretty much her brain is monitored for 3 days straight.  

I was so excited to have Carter and Kate come to the hospital, Sydney would get so excited!  They usually can't come due to RSV restrictions, but with Carters play off game one night and then both kids getting the flu the next night (Neil was a trooper with the 2am vomiting) I was soooo bummed! Evi was a treat that came with ice-cream and all!!!          

                                                                                       The worst part is taking off the stuff!

She did great, no seizures were spotted which is good, but there is a little more confusion with that.  But it is done and we are thrilled!!!

Carters Baseball

Carter did an amazing job this year in Baseball.  They made it to the championships.  I am not exactly sure what that means except we had ball from March through June rather than stopping in May.  He played mostly third base and I loved watching as he tried his arm at pitching and did really good!  He had a great set of coaches and a wonderful team.  

Go Storm!

 Carters littlest "biggest fan"!

Kate loves her hats, so when ever she found  big blue one we had a hard time getting it away from her!

Atlanta

Sydney and I headed to Atlanta to see a new mitochondrial specialist. A couple years ago we went back and saw a Dr. but he was only a diagnostic Dr. and this is one that will follow her, yearly we will go visit and in-between we will do Skype. Miracle Flights  is an amazing organization that helped pay for Sydneys and part of my flight.

 Dr. Kendall, we only had an hour with her so it was an intense hour were I wanted to get as much infer as possible.  Sydney had her stethoscope ready so she could listen to her at the same time.

 Dr. Kenall sweetly gave her this stuffed animal that plays a recording when squeezed.  She loved it.  It was a good visit.  Nothing hugely new, little bits here and there, but she will be wonderful to have on Sydneys Dr. team that will monitor her. 

 It was nice to visit cousins for dinner and later lunch.  I never knew fire flys were really real. You read about them but we actually saw them they were awesome!

Last time the temple was under renovation, so besides the 30 minutes it took us to find it, it was nice to walk around the grounds.

 We had some time to kill before our flight so we went to Olympic Park.  There was a water pad that Sydney liked watching the kids run around on, she only let me get her feet wet.  But it was fun!

 By the end of the trip Sydney was pretty tired and so ready to head home and see Neil and the clan.  Thank you to all those that took the other kids last week, this week and then next week!!!

Girls Camp

I have to find my other camp pictures, but here are a couple of the women I was able to play with all week.  WE went to Camp Shadow Pines.  It was a great camp, wonderful girls in the stake!! It was a joy to be with the YCLs, I was amazed at how they listened and I didn't have to track them down, nor get them out of bed, they were were they needed to be doing what they needed to be doing all week! It was so fun!

These are the YCL leaders I was able to work with, great women!

Doing the synchronized swimming skit!

After a full week some of the stake staff went to lunch on the way home in Payson.  We were all Slap happy  and the waitress fed into that and had us crying form laughing the entire meal!

Memorial Day

 We attempted a small family bike ride with those that could go.

 Alway nice to throw in the swimming!

 

Moms Dresses

I told mom when I had Kate she needed to make me some matching dresses for the girls and she came through with the request.  They looked so sweet, the pictures don't even shoe how sweet they looked!!  Mom smocked the tops of both, they are beautiful!!

Allergy Testing

 Sydney was tested about 3 weeks before this to outside allergens and dogs and dust and all that stuff, but after her EE diagnosis she needed to get tested for food allergies.  This is how it is done.  She sits on my lap and they do a little scratch with that specific food on the tip of this thing and then you wait for about 15 minutes and see what she is allergic to.  Not her favorite thing to do, but she was able to watch Elmo and did great.  First step to figuring out what she can eat is done!! She is my little trooper!

Haning around the Marshall house

Neil wanted to teach Kate to sleep in the tent so he set it up in the living room.  They did good until bed time! Neil is a good Dad!

 Neil taking Kate on rides around the family room, she loved it until she'd fall off and Carter would think that was funny and keep running.

 During the summer we take the tramp down and did a needed yard day and got things back to par and Kate has learned to love the swim.  Enjoying our ice-cream cones on the swing with Sydney. 

Mothers Day

For Mothers Day the kids have to be sweet to me and Neil tries also so I took advantage of taking pictures since they had to be pleasant and not complain!

 Neil saw these shoes in Kates closet and was not happy we hadn't used them yet.  They just started fitting her and its summer.  But that didn't stop him, so those were her church shoes that day and he loved every minute! They just fit her little personality!

Happy Birthday Sydney!

I can't believe Sydney is 6!!  

What a wild six years it's been, but what an amazing blessing, we'll take many more!!

We had a little birthday party with a couple of Sydneys friends, they jumped on the tramp with water and had a blast!

I

 We have waited a long time for her to get her ice cream cone, she got it and loved it!!!  We had the small little cones and they were perfect!!

Kate Tubes

Kate got tubes in her ears.  She was so funny, she wasn't nervoue, she was cracking up the nurses because she was overly polite with thank your and pleases every time they left the room.  

Sydney Tests

Sydney went in for her EGD, still not sure what that stands for, but her GI, Pulmonologist, and ENT were all going in to check out her chest, lungs, throat and all that fun stuff and take some biopsies and look around with a camera.  They were also going to put a PH probe in for a couple days to measure her acid movement.  It kind of like an NG tube with little computers all over it that read things.  

The EGD showed she had gunk in her lungs that will be treated with meds.  They biopsied her esophagus and a couple weeks later was diagnosed with EE Eosinophilic Esophagitis.  It took me an entire day to be able to say that one.  She from what I understand is allergic to certain food and it is hurting her esophagus.  While they were in there rather than doing the PH probe they took out her tonsils.  

The next day she had an MRI to see if the things we thought were seizures maybe were strokes.  But due to the double day sedation she had some breathing difficulties during that, but they were able to finish the test.  No strokes.  Good to know, but were hoping that would explain the regression in skills.

This was really tough on her!!!  She had had tubes in and out of her throat and then the tonsils so they were double sore.  She didn't understand why she was hurting and wouldn't eat anything by mouth to sooth it.  She did a lot of crying and the best remedy was snuggling.  Carter was sweet with her.  About a week and a half later she started perking up!!! Glad that one is all done!

Thats my Kate

At a photography class the teacher talked about different kinds of pictures.  One of those kinds being those things that you want to get mad at your kids for doing that one day you will maybe miss when they are grown. I have tried to do that.  Her are a couple for fun.  

While updating the blog, I thought I was good for at least 10 min.  Kate had her oatmeal and strapped in to her chair and watching Elmo.  Came back 5 min. later and she had oatmeal all over her hair.  She does this all the time and it is so smooched into her hair I have to give her a bath and comb it out.  Gotta love it!!

Kate pulling all my can food out rolling it on the floor all over.  Luckily this has been good practice on how to "clean up" and she does good.  It isn't organized but it works!

Kate putting all the toilet paper in the toilet and plunging it and then pulling it out onto the floor of the newly cleaned bathroom.