Monday, April 7, 2014

Where has the time gone?

There is sooo much to catch up on! Time has passed so quickly!
Ok, Edward. Not much has happened. We lost insurance for him last May and because of that, stopped doing therapies. (I was kinda burnt out anyway) Insurance was and is a big stress. Oh, Edward's G-tube came out and we couldn't get it back in so we had to go to the ER to get it back in. It was very traumatic and painful for Edward because his hole closed up so quickly. The doctors and nurses tried expanding the hole by trying to push the tube in. It was an eight hour painful experience for my poor little boy. Edward has really improved his vocal ability. It is sooo....cute/loud/annoying because all I hear all day long is 'mommy' 'mom' 'mommy' 'mom' NONstop all day. He is such a crack-up though. this is the year of, Lord willing, getting him to walk. after having a baby and essentially having another baby, it is really hard to go places and carry two kids, one who doesn't move well. like carrying a heavy awkward board. my back is shot that is for sure. so our first pt appointment was last week. it was good...i knew it would make me sad. it always does. he has lost range of motion in his neck and hips and well everywhere. mainly because that is the nature of his beast. i am determined not to have a wheelchair. everybody keeps mentioning a wheelchair. i can't accept that for him. it is a mental hurdle i have not crossed yet. even though many therapists have suggested it.  so i am determined to make him walk.
Ok So we had an appointment with Edward's spine and pulmonary doctors this last week...did not go so well. turns out his spine is at 60 degrees in traction and his pulmonary doc was/is concerned for his lungs and that he is using one side more dominantly. we had a lung scan last week and from quick glance the radiologist said that it looked normal. so that was good. but they have mentioned doing surgery on his spine in september. and then lengthening the rods every 4-6 moths for growth so we have been tasked with fattening him up. which will be very difficult. his weight has plateaued at about 16 pounds. they also want to clip his abductor muscles in his legs for hygiene and do thumb and ring finger surgery all in the coming year. poooor thing. the past year was doctor free bliss. but i knew it was just a calm before the storm. edward is turning three next week! cant freaking believe it! he is the funniest sweetest boy ever. i adore his personality. such a sweet soul.

fell asleep during a timeout in his room
lake love
always happy
chuckecheese fun
my little redskin
loves his sis
christmas baby

i have posted more videos on vimeo...
Ok, so the last time I posted was when we moved from our first house and I was terribly sickly pregnant, to a house that was uber dark and in a bad neighborhood. A couple days after we had been in the new house our neighbors had a domestic dispute, to put it lightly, and yeah. it made us super uncomfortable and unsettled which we translated into 'get us outa here back to spokane.' So our summer was spent looking for jobs and opportunities in spokane. we found some and pursued them. We even pursued a job in Walla Walla! They flew our family down and Adam interviewed and Thank Jesus he was not offered the job. It would have been very difficult to acclimate to life there. We made multiple trips to Spokane and even looked for houses! I feel madly in-love with my dream house of Spokane. In the middle of the trips (any excuse to get out of our house), we took a vacation to lake Pend Oreille rented a cabin for our family and played in the water! It was soooo wonderful! A dream vacation. After the first day we agreed we needed to book it the second we were able to for next year.
On July 11, my sister flew over to Spokane to be with me as we had our 20 week ultrasound. I was very emotional! As they were checking the anatomy..I just lost it. It was perfect which made me sooo sad for Edward. Why was this one so perfect and Edward not?..Meaning joints and general anatomy. Then they told me i was having a GIRL!! I was soo overjoyed!!! I couldn't believe God was giving me a girl!  We all laughed and cried because H made a funny when they told us a girl. After the appointment, we went shopping and bought her first girl clothes. The rest of my pregnancy was, for the most part, easy. I was uncomfortable and suffered through bad heart burn. Eating was annoying because I always felt sick afterwards, but I love being pregnant so it was all ok. Oh, at about 29-30 weeks i had kidney stones! HORRIBLE...that pain was like no other. So that was a fun little trip to the er. I ended up having baby Christmas night after a long hard labor. I love my baby girl! :)
Our last trip to spokane we interviewed and it went really well..adam had it. But I had a really weird feeling about it. For some reason I felt as if it was not where God wanted us. So adam turned it down and we decided to move to yet another house that was in a better neighborhood. my mom and dad came over and helped us move and paint baby's nursery. I did a lot of sewing for her and a lot of shopping. I obsessed over her nursery, which, i am madly in-love with! I got into knitting!

there is tons more but for now i will be done. I will update more regularly..promise :)

Monday, June 24, 2013


(Edward rolling like crazy in an empty house.)

Praise Jesus May is over!! You guys have no idea..well you are about to.
First, we received a 20 day notice to vacate our house. It came as a TOTAL shock. Our "lease" wasn't up for another month. However, they worded the lease to benefit them and bind us. We were furious. And this was right after I Finally hung pictures on the wall! I have told Adam that I will never hang another picture on a wall unless I own the wall.
Then my whole family got sick. The boys, thankfully, got over it after a week or so. Harvey was a trooper. When Edward gets sick, he always vomits at night and loses a bunch of weight. So that happened. I was horrible sick for three weeks with a sinus and lung infection. I got so sick because I am pregnant!! The start of May was the start of some horrible morning sickness! Ugh. Still going. I have thrown up multiple times. Those three weeks when I was double sick were the absolute worse ever. My poor family. I could barely take care of the boys when Adam worked. Adam would come home on his lunch break and feed the boys and put them to nap. Adam did everything! He packed the whole house up, took complete care of me and the boys. During this time he got sick as well. It was misery for us. The boys didn't leave the house, I literally didn't leave the couch. All the while trying to move. It was hard enough just being pregnant sick and sick sick then add on the stress of moving. It was a horrible nightmare that is thankfully over now.
Everything works out for the best. We were super sad to leave our neighborhood. Our neighbors were wonderful and Harvey had lots of playmates. So sad. Now we live in the ghetto which, oddly, is up the hill, not even half a mile away from our old house. But, we are in a month to month and I see another move coming soon.
But yay! I am with baby number Three! We are due in December! I definetly want a girl, of course. :)  I am prepping myself for another boy. I really have no expectations for this pregnancy, though. It has already been COMPLETLY different from the previous two. More sick, constant nasty taste in my mouth, constant saliva production, already sleeping uncomfortable, throwing up acid, already had some contractions, not hungry, got dehydrated (due to sickness), lost weight, and nothing sounds good. In theory those might be good odds for a girl but i am definetly not counting on it! My ninth week was emotional. During one of my many doc appointments with Edward, I remember one doc telling me that Edwards joints started forming out of place at week nine. For some reason, that really hit me because I couldn't believe it happened that early. So the day before I turned nine weeks I literally cried the whole day in bed. I have had two ultrasounds already and my last one was nice because we saw legs kick, which we never saw with Edward. Harvey was so excited to see the baby. It was adorable. I am optimistic about the health of this babe. Whatever the Lord gives me I will take! I certainly don't think I 'deserve' a healthy child or am 'due' one. I know that I am not in control.
my sweets!

boys and i sharing a delish dessert

Edward is eating real food now!

Monday, April 15, 2013


Happy Birthday Edward!! I can't believe you are two years old! You are a major pill-butt but I Love that about you.  I adore you!
Cheese-ing it up!

didn't actually like his hands messy

Thursday, March 28, 2013

New post!

First a couple words.
Shout out to North Dakota for standing up for the unborn! No abortions past six weeks. That is a huge success in these sucky social times. I heard a stat semi recently. Planned Parenthood, last year, killed 996,000 babies and for every murder made $314 from tax paying citizens. Sick.
Marriage is between a man and a women. It is not for homosexuals to tell me how to describe marriage to my children. If you want to make homosexual decisions then obviously you are free to. I am not going to exclude you from my tea party, in fact you would make it fun. I am just sick of people not saying what is right for fear of offending. Well, I don't care. If you think I am a bigot or a intolerant hater for having this opinion, then stop reading. But, in effect wouldn't that make you the intolerant hater?  I can have my truth just like you can have yours. Deal with it. AND I think we should have heterosexual parades. It is time to stick up for God's intelligent design i.e. man and women i.e. procreation.
Back to Edward.
Video One:

Video Two:

cheeto monster in his chair
more cheetos 
better idea of chair
PS....he has dropped a pound due a very long lasting cold. throws up every night and sometimes morning. not fun

Saturday, March 16, 2013

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Friday, February 1, 2013

Happy New Year! I am very glad to be rid of 2012 and excited for the new year! Edward weighs a fat 14.5 pounds! (down to 14.1 Wednesday) His spine is holding and I don't have any surgeries planned, as of now. (Possible wrist and thumb surgery in a year...maybe) The news on his spine is good. He had a traction xray done and his curve (while being stretched) is 47 degrees. The point of concern is 50, so I need prayers to keep it stable for many years to come! Or at least 6 months.
Edward is talking a lot more and is rather funny. I can't quite tell who he is more like. H acts most  definitely like me. Edward....I can't quite decide. He thinks he is hilarious. He is stubborn and smart as a tack...sounding like me..waaahahaha :) He knows exactly how to work me. My husband thinks it is rather sicking how easily he can get what he wants with me. His feet are holding pretty well. Doc said we have lost about 5 degrees but considering how tight his feet were to begin with, that is pretty good.
Nothing new, really. Wednesday we have another arthrogryposis clinic. (It is Friday now) Allllll. Day. Long. I love my days with my boys. I love watching Downton Abbey and the Bachelor. I am obsessed with fabric and making stuff. I recently started to read again. WHAT?!?? I know. Not a whole lot mind you but enough.
Oh, we have Edward's equipment. Freaking industrial stuff. Unreal how heavy it is. I also can't believe it is in my life but it is. (picture to come)
I can't believe Edward is going to be TWO soon.
bored of the ipad so he napped

rare snow day

attitude with the pants i made him for Christmas

loves of my life!

Sunday, December 16, 2012

My mom showed me this video. It is amazing.

This is my Christmas picture of the boys. You don't understand how precious it is. The amount of work it took for Edward to pull himself up and then lean his head on his brother.