Monday, February 23, 2009

how do you slow down time?

Ella turned 6 months old on Saturday, Cayden will be 9 in a month.. its so crazy.. We had Ella's party and it was great. I think she has a little social anxiety, once more than a handful of people got there she got a little cranky and then went to sleep.. my dad said that is her defense mechanism..lol.. We were so grateful to Erin and Tony and Ebeth for hosting it and opening up thier home to us.. that evening after the party, my mom took Ella to her house to recover and we took Cayden and my niece Makayla to incredible pizza, Erin and Tony and E went and so did kevin, Mandi and thier kiddos.. it was alot of fun.. and for one of the first times since Ella got sick, even though I missed her like crazy, I didnt worry about her, or think about her being sick.. I will never get use to the fact that this awful illness is in her, but for now, she is great.. and I am thankful for that. I often find myself when I am away from her (which is not often) thinking about her, worrying she is going to get sick.. I think that all dwells from the one night that I came home when she was in the hospital, she got soo much worse.. but it is getting easier now, I am able to function without her right by me.. I think maybe I am drawing some peace.. the Lord has restored her health to us for now, and it would be a shame for us to not enjoy it and her! She is so funny, she smacks her lips and talks and jabbers all of the time.. She is so spoiled its ridiculous, she cries if me, Jay or Cayden arent right by her entertaining her.. when we feed her, she lets us know she is done by puckering her lips and turning her head.. it is so cute and full of attitude. We are so thankful for her and cayden and have decided its best for us to live in TODAY.. tomorrow will come and we will deal with that then.. but like I have said before..I am thankful for today.. I'll leave with a few pics as I step off of my soapbox.. (this is a little longer than intended :)


Ella in her pretty party dress


Cayden checking out Ella's new bean bag and Ella checking our Caydens ear?

We didnt get very many pics of the party and NONE of all 4 of us together and none of daddy and Ella.. this is Jay and Ella playing before bed a week or so ago.. she always laughs and smiles til I get the camera out..

"Aunt" Amanda, me and Ella munchin' down some much needed food :)Happy Birthday baby girl.. this has been the best 6 months we could ever ask for!!

Friday, February 20, 2009

fifty is nifty.. or so I hear

I personally think my mother in law is pretty darn nifty if I say so myself.. I meant to wish her Bday wishes on Wed the 18th (her actual Bday) But instead I spent all night scanning pics :) We had a party for her tonight and had a great time.. she got her new camera and tons of other good stuff, all of her immediate family was there, which is a chore in itself! and she apparently didnt get enough, because she took Zane and Cayden with her.. what can I say, she is a glutton..lol.. anyway..sorry this is late Nancy, but Happy Birthday and thanks for everything!! Love you!

just a few years ago this was nancy.. :)




5 generations.. cayden was only about a month or so old..



cayden loves his Nana so much

Wednesday, February 18, 2009

sometimes it hits you..

and I know what I know in my heart, but my brain takes me away and I look to myself for answers and blame myself for everything that is going on, and I take it all in and don't let it out, just keep it in the small box until I feel like I am going to explode, I hate it.. I hate that I cant talk about things I feel without feeling like I am just going to die sometimes.. I say all of that to say this.. I was just cleaning house and Addison Roads song "hope now" came on and I've heard it, but never listened to it, really listened to it.. and I did today and I just started crying, and it reminded me, even though I KNOW it in my heart, but this is all too big for me to handle on my own, and I shouldnt have to.. I can be a stronger and better mom to my kids during this storm, if I hand some of it over to our Lord.. he is the only one that can help us, provide a miracle, or take her home to him, it is out of our hands, so it is only natural to just appreciate the borrowed time we have with her and savor it, until one or the other happens.. so I added a playlist to my blog, I normally think they are pretty annoying since not everyone listens to the same stuff.. anywho.. take a listen and you may get what the random jabbering means..

here is the part that got to me..


When my life is like a storm
Rising waters all I want is the shore
You say I'll be ok and
Make it through the rain
You are my shelter from the storm

(CHORUS)
Everything rides on hope now
Find More lyrics at www.sweetslyrics.com
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

I am not my own
I've been carried by you all my life.....

Monday, February 16, 2009

THIS WEEKEND ONLY....

=) we are having a 6 month party for our Ella bella since we aren't sure how she will feel on her 1 year Bday in August, hopefully she feels great, but just in case we would like her to feel special(even more) for 1 day! Erin is putting it all together since I am so scatter brained.. I have invites and forgot the post office was closed today, and am sure there are people I forgot to include in them and some I didnt have an address for.. but anyway.. its pretty much an open door, feel free to stop by and say hi, even if you cant stay long :) We also have some exciting fundraisers coming up that I will post about when we have more exact dates..



p.s ~ even though she is most likely not going to have a transplant, there is a specialist in Pittsburgh that we are going to try to see, as well as a treatment called Hyperbaric Oxygen Therapy that we are considering that has shown helpful in several mitochondrial patients, she is also getting put on a high calorie formula, and a mitochondrial coctail to help boost what mitochondria that she has.. most likely not be covered by our insurance, which is the importance of the fundraisers... thanks and hope to see you soon!!

call or email if you want to come and need directions!

Friday, February 13, 2009

Tuesday, February 10, 2009

update

this is also on her carepage.. I just cant type it again, so I will copy and paste~

the news was good and bad. Bad news is that although she is not in "liver failure" yet, they do not anticipate her being a candidate for liver transplant. So we think that we are going to try to come up with the funds and time off work (jay, not me) to go to Denver and see the mitochondrial specialist there..as well as his team of other specialist that deal with this disease. We know he is not going to offer a cure or anything, but just some insight from someone who is wise to the subject.. So with out divine intervention via a miracle, we are going to lose our sweet baby to this.. we don't know when, hopefully we have more time for her being healthy and enjoying her.. its hard to wrap my head around all of this and I feel completely broken, but miracles happen every day, right?
Good news is she is pretty healthy. Her weight is down in the 3% area, so we are going to try a higher calorie formula and eventually a feeding tube to help her gain weight and to keep her sugars up. He did say that her liver is only at about a 10% loss right now, and said it surprised him, he was expecting it to be much worse. We are also going to start physical therapy to help with her muscle tone.. this is all alot to take in, but we were some what prepared for this.. please just keep praying for her.. she had lab drawn today and they did not draw enough, so we have to go back tomorrow. She is also going to have an EEG and MRI done soon, along with several appt's to GI, neurology and back to Dr Kayser in 2 weeks.

Monday, February 9, 2009

To the Doctor AGAIN?!?!?!


seems like its taken forever just to make it to tomorrow.. I am just aching inside with anticipation of news.. praying soo hard for good news.. still just hoping this is all an error and she is fine... =) she is good today.. talking, my friend Mandi took some ADORABLE pics.. I just want her to be okay soo bad.. It seems messed up to wish surgery for my baby.. but if its that or lose her.. its obvious what my choice is.. please pray and feel free to share this site or request prayer from any one and everyone that is a praying person..



I found this quote on someones site I saw and copied it.. its never too late for that miracle..

"Hope is the companion of power and the mother of success, For those of us who hope strongest, have within us the gift of miracles."
--S. Bremer

Saturday, February 7, 2009

what we've been up to..

discussions of the world/politics/ things in general.. a little more griping than discussing I guess..=)

video

smiles and hanging out naked is always fun.. also watching a little TV and orange crush is good for the soul.. can you tell cayden is growing out his hair...yay fun.. ugh only a few more weeks and then we get to cut it.. End of Feb was our agreement.. I prefer the clean cut cayden I think.. this is a shabby looking pic, but its what I got :)

Tuesday, February 3, 2009

my poor son..

He is such a good kid and so sweet and so caring, and just hasnt got nearly enough attention lately, and I feel awful.. he is too smart and can tell by just looking at me that something is wrong.. he will ask and I say "nothing, just tired" and he gives me a hug and tells me he loves me.. I am tired, so I'm not lying to him about that. I just dread having the talk with him about her.. he was super worried about the biopsy.. I cant imagine how he is going to take this blow..
This weekend I was checking Ella's blood sugar and he was sitting by her and asked if I would check his, so he can see what she goes through each day.. I said yes, but it requires a little stick.. so I checked hers first and it was 81 and then his and it was 105. He looked at her and then at me and asked if they could stick a needle in his arm and take blood from him to transfer to her body to make her better.. holding back tears, I told him sometimes they do that, but Ella was okay for now and his was just higher because he already ate breakfast and she hadn't.. He never ceases to amaze me and I love him sooo much.. and so does Ella.. she can be throwing a very angry fit and he says "princesses dont cry! why are you crying?" and she will stop and just look at him as though she understands.. below is the look she gives him when he baby talks her..

she thinks he is crazy... every time he would walk away from her she would fake cry so he would come back and talk to her more.. she has him sooo wrapped.. ( she is looking at his fingers in the pic below, she LOVES to inspect everyones hands)

well

Dr called yesterday and the DNA test came back positive for the Mitochondrial DNA depletion.. We have an appt one week from today to discuss our "options".. I just am befuddled, I honestly didnt think that was it since she was seeming to get a little better all of the time.. this all seems like a very cruel joke.. I just cant believe this is even happening..

I did set up a care pages.. this is just so others can keep an eye on progress. and maybe this blog can be about other things than Ella's health.. did you know I have 2 children..yeah.. he's been abandoned on this whole blog.. I will have to tell you all about him in my next post..anyway.. here is the care page.. you do have to create an account to sign on though.. its easy..

http://www.carepages.com/carepages/IsabellaMagee