Sunday, October 19, 2014

It's time

Have I ever mentioned how much I hate getting back into blogging. I have this crazy urge to back track and try to record everything that has happened over the last few months or years and tell you all the grimy details of my life but then I remember... I have a horrible memory. And I can't remember it all much less take the time to write it all down. So here's to another attempt and desire to being blogging again.

I could completely overload this with photos.... and caption everything but that would take me forever. So instead you get a quick update and next week will be a weekly update!


Eliza went to school every day. She is doing really well. We had parent teacher conferences this week and learned that Eliza is doing great in everything except her reading. She seems to struggle a little with phonetic reading which is hard since that is really what they teach at this age. But we have been working on it more at home and she is showing excellent improvement! She loves to write and has recently started writing notes to everyone. My favorite are the notes that she writes to me but that's probably because I'm just that self centered and there is nothing better in life than a love letter from your 6 year old! She is also doing soccer this season and has shown huge improvement! She used to be terrified of getting in the mix to get the ball but now she will fight her way in and it is so exciting when you see her get in there with the ball and make good progress! We just got her pictures back and they are so stinking cute! I'm in love! 


Alayna is busy with school. She is at a new school with new teachers this year but she LOVES her preschool teachers and the experience as a whole! She has recently learned how to spell her name and she can even write it now too! I'm thankful that she has not taken to labeling everything with her name but I find it on lots and lots of paper! She is my little mellow child. She has bursts of heated emotion but otherwise she is so chill and she has that same chill effect on just about anyone she plays with. She is not doing any sports currently because she didn't want to do soccer and we aren't doing dance this year. We recently had our primary program at church and Alayna willingly stayed in front and even walked across the stand. OK, so she had the biggest scowl I've ever seen on her face and she didn't say her part, BUT she walked across the stage without bursting into tears! If you didn't already know, Alayna is very very shy and she HATES to be the center of attention in a crowd. She doesn't even want to open her presents at her birthday because people are watching her. So to do what she did at the Primary program is a huge deal!


Parker, well what more can I say about Parker. He is such a 2 year old its frightening! He is stubborn and funny and adorable and he has these big blue eyes that are the perfect mask for all of the little mischievous things he does. He is learning quickly that washing walls is not as fun as coloring them. Screaming is more fun if it is coming from your sisters mouth and everything (literally) should be done at a dead run.I am learning that If it has wheels or is meant to be thrown then it is bound to be a cool toy! He has a little three wheel scooter that he loves to ride to take the girls to school every day and he is really good at it too. People often comment on how adorable and impressive it is based on his size! He loves to play soccer and has some pretty impressive skills based on the knowledge that he is only two! 

Sarah, I have been busy with my own little business. I finally caved and started selling my crochet hats and shoes that I make. I quit using etsy to try and sell things because I wasn't ever actually selling anything which was irritating to me. I've come to the conclusion that etsy is where other crafters like myself go for ideas not where people really shop very often! So I now have a facebook page that is keeping me comfortably busy with hat making! I have been working out more often these days because I've put on a few more pounds than I want to admit. But much to my dismay the extra exercise has not helped the weight but has identified a different strange problem. I have very low blood pressure and I have also started blacking out while exercising so my doctor is putting me on a heart monitor this week to see if we can record what is happening to it when I blackout. We already did a bunch of blood work and an EKG and everything from all of those came back 100% normal. So hopefully the heart monitor can answer some questions and if not then we will just keep plugging along, and manage the workouts differently!

Ben, is doing amazing! He is working over 30 hours a week and we have submitted to be taken off of disability which is awesome! We also this week celebrated his 2nd Re-Birthday by going out on a double date with Mallory and Evan. His actual re-birthday is not until the 25th but we are grown ups and reserve the right to celebrate when its convenient! Ben also has officially been taken off of all of his immunosupression medication (tac). THIS IS HUGE!! we are so excited now we have two more weeks to let it flush from his system and another two weeks of watching him to make sure we don't have to start them up again and THEN he will get to have his central line taken out! I am unrealistically excited about that! for some reason that is the sign to me that we really get to start moving on with our lives. 










Tuesday, July 22, 2014

ICU photos

 Ben's Chart. Believe it or not there are actually three charts just for him that are all equal in size to this!
 right after lung biopsy pre-ICU

 the little black dots were where they would give Ben little electric shocks to make sure his body was still responding while paralyzed. Chemical paralytics can have very long term side effects so they were trying to be very careful with him.


 compression socks on his legs and special boots to help his feet stay in the right position so he will learn to walk again.
 all his messy tubes and medications. I have no idea how many medications they had him on by the end but it was enough he had two trees with 4 pumps apiece in addition to the ones that didn't need pumps

 swelling from his kidney's failing. He went into the ICU at 145lbs two days in he weighed 185lbs. After all was said and done, and he was off the vent he only weighed 130lbs.

 all gowned up! waving hi to my babies while I miss them like crazy!




 snuggled up i n the 'bonnet hat'

 much much more manly in orange and grey!

 I sent these pictures to his mom after Ben had had a difficult day and by the evening things were finally starting to look better! It was a moment of peace in the storm!

 passed out. Couldn't help it, I'd been awake for so long and so stressed out it was taking it toll by this point.

 First time off the Vent! This was before he was totally crazy. The tubes in his neck were where they did the dialysis.

 second time off the vent. mostly tube free and a successfully placed feeding tube! (which according to him, hurts like crazy all the time not just when they put it in!)


 130 lb legs and arms

 MY MAN! who finally knew who I was and didn't hate me anymore!
 boney feet!
 We took a little trip outside one day after therapy. It was our 'date' and it was perfect to just get to be outside for a while!

 scars from his lung biopsy. The one seen above is still open and tunnels under the skin a few inches. It is now July and he still has to allow me to pull out the stuffing every two days and restuff it while it slowly heals!