What Now?

So with the last couple months this is how we are currently . . . happy, sweet, and amazingly strong and . . .
mitochondrial disease - after Atlanta we have a good new Dr. that will follow her and watch if needed.  With this disease, there isn't a cure, you treat symptoms as they come and can try small things to slow it down.  We are involved in a Mitochondrial group that is doing a fundraiser and walk in Nov.  if anyone wants to come walk with us, we would love it, let us know.  Anything to show this little one she army she has supporting her would be great.
EE - we have done the allergy tests, and will meet with the allergist next week to hopefully get an "approved foods" list.  From that list they will possibly add a fruit, vegetable, and a grain.  Then she will have a repeat EGD in a month and see if her throat did ok and if so add more or take away.  But this is all depending on the results of the biopsy that will be back in a week or two.  They have to make sure the eosinophils have calmed down.  If so we will hope fully add back oats and apples or something. 
Development - she has calmed down a little, her talking has started to come back more and she isn't pounding as much.  The giant trampoline in our family room has helped that.  We are waiting to maybe approved for an iPad to help with communication hopefully this summer.
Swallowing - her aspiration maybe be an issue, or the EE may have caused that.  She will do another barium swallow in a month or so.  But in the mean time we will still limit most liquids.
Dog - on the waiting list for the canine assistance.  May have 4 years still.  I have 4 years to work on Neil letting us get a dog and do the allergy shots to try and lesson that reaction.
Allergy - We will get the approved list and start the allergy shots for the outside allergens.  THat is a weekly shot she'll get and then you sit and wait for an hour to make sure she doesn't have a reaction.  They will do that weekly for the first year and then less the years to follow.
Seizures - They are amazingly quiet right now.  They EEG we did didn't show any small seizures going on so that is good!  If they start again, there is a little wiggly room on meds.  But hopefully they'll stay away.  
GA Type 1 - her genetic disorder, she is on her low protein diet for this one.  This has special precessions more when she gets sick.  If she gets de-hydrated is when issues arise here.  She avoids soy and other things, but right now, this too is not presenting strongly.  We just keep watching and a blood test each month helps to monitor levels.

I think that is all. . . if it isn't, it is enough!  We love this little girl more than words can express and would take this all away in a heart beat if we could, but she blessed our lives daily.  I am loving watching Carter get a little more aware and protective of her.  We love to see Kate look up to Sydney and Sydey continues to learn from watching Kate.  The Lord had a plan when he created our family and for that we are grateful! Thank you for all the love and support we get from all of you, amazing family and friends make things do able!!

More of our little NUT!This

This is how Kate wonders around the house.  When she comes from her room or Carters you never know what she will have on! She keeps us laughing! 

She is driving me crazy with this blasted oatmeal, and Carter thinks it is so funny, if it happens again maybe I'll start letting him clean it up, then he will be more on my side . . . 

Sydneys repeat EGD

AT PCH for Sydney EDG the word that stands for is crazy long.  They pretty much went in to her throat and stomach with a camera to check out things.  They biopsied some of her esophagus to see if her EE ( the allergy inflammation they'd found about 6 weeks ago) was better.  Eating anything by mouth for the last month has been off limits to try and let her heal.   

She was so good at helping, she pushed the bed and all the buttons to open the doors.  

She was a little bummed when we made her get on the bed! 

All went good, her throat will be a little scratchy for a bit, but is't good to be done.  Now we wait a couple weeks for results.

Patch Test Results

We went for the 40 hour mark on Sydneys patch test.  It was a family event, they look so calm and so innocent, but I am shocked that room was standing when we left, we will never have a family trip to the Dr. if we don't have to!!! 

As crazy as it was with the others with us, Sydney does have much more fun when they are there filling her wait time!  We love our good big brother!

They took off the patches and noted a couple small reactions and then two days later we came back and they checked it again. No CRAZY allergies, but almond and coconut have been added to the allergy list.  And she her back didn't smell after everything was off.

patch test

 Sydney went for her patch allergy test today.  I had Carter come a long, in my attempt to have him be a little more involved with Sydney.  Her last allergy test showed her allergies to milk, egg, corn, orange, peach, turkey, mustard, and onion are the bigger ones.  So. . . this test she gets to wear on her back little chunks of food for two days and then those are removed and the next day we come in again and have her back looked at and then one more time after that.  This is to show if there is a delayed allergy or if there is one if the food is eaten over and over.  So, she has taped to her back egg, corn, milk, peanut, soy, wheat, almond, apple, avocado, coconut, peach, & turkey.  I hope she doesn't start stinking later tonight.  So. . .we'll see how this comes out. 

 After this test and the scope on Thursday we should be able to start re-introducing a couple foods for a month and see how she does.  

New Reasoning

Before I really tried to not make this blog all about Sydney and her medical adventures.  So I worked on having balance with the other kids.  But have changed my reasoning for this blog.  We have some great friends and family that this is an easy way to keep in touch. I am going to try harder to update each month on all the family, but will write Sydneys medical updates as they come so you know. What goes on with Sydneys health doesn't define her, her diagnosis's don't change who she is or change how happy and loving she is, but it may help to just understand a little more a about her.  We love and so appreciate all the friends and family that help our entire family in our crazy adventures of life!!!

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!