Sunday, January 2, 2011

The Closing of 2010

It has been awhile since I have written so I have TONS to catch up on!!!
Let's get started......

Josiah's Eyes
Josiah's eyes are finally healed after surgery (for the most part... his left eye still kind of gets red sometimes).  At our most recent appointment we found that his vision is actually better in his left eye than it is right which is unusual because his left eye is much weaker and has more problems than the right.  His left eye shakes more and has trouble tracking.  After surgery his eye crossing is much better but not gone.  We probably won't do any more surgeries on the right eye because his left eye shows signs that at some point there was poor blood supply to it.  Therefore they don't want to put any risk to his "good eye".  However, a repeat surgery will probably be needed on his left eye.  We will check up on it again in a few months.  For now we patch the right eye for an hour each day in an attempt to strengthen his left eye.  Josiah also got some new glasses in December.  He looks more like a toddler in them.  After he tried them on for the first time, I said, "Josiah, you look so handsome!".  He looked right past me as if I had said nothing and stared at Iylah with his eyebrows perched waiting for her approval.  Iylah nodded and told him that they looked good and he smiled ear to ear.

Josiah's Weight
In November Josiah got a stomach bug and was throwing up for a week straight.  The only thing we kept in him during that week was small amounts of pedialite, a few bites of applesauce, and a few pieces of cereal.  He looked so skinny.  I could see all of his ribs, his sacral bones were sticking out making two bumps just above his bottom (Craig asked "What are those?".... they were his bones sticking out in places that you usually don't see bony prominences), and his arms looked like twigs.  He was very fragile!  That week was beyond stressful.  I always feel like if Josiah is sick it is my fault because I didn't do a good job keeping him from germs, etc.  And if he stays sick long I also blame it on myself as if I am in control of it.  God keeps having to reteach me the same lesson over and over again.  By the end of that week I finally gave my burden up to God realizing once again that I cannot heal Josiah.  It is not in my control.  Soon after, Josiah began to feel better.  During the month of November, Josiah actually GAINED weight.... I don't know how?  But he even went above his normal growth curve!!!!!  Our nutritionist was shocked and so was our gastro-intestinal doctor.  They both said whatever you are doing is working so keep on doing it.  Praying, that's what I was doing!  Another miracle before my eyes!  You would think that by now my first resort to problems would be falling to my hands and knees in prayer, and usually it is still my last resort.  After I have tried everything else and I feel completely helpless, that is when I am humbly brought to my knees.  Josiah is now weighing just over 19 pounds!

Josiah's Heart
In the beginning of December we had Josiah's cardiology appointment.  These appointments last at least 2 1/2 hours and Josiah is fussy the entire time  They have to put tons of rubbery stickers on his chest and stomach to get readings and those stickers do not come off easily!  Josiah also has to lay on a strange bed, while a strange person puts strange gooey gel on his chest and rubs the gel all around using this strange rod thing.  He HATES it to say the least.  Although it was a very long draining appointment, the results were delightfully unusual.  The cardiologist expected that as Josiah grew his heart issue would get worse because his heart would have to work harder to pump more blood volume through a larger body.  Because of lots of prayers, Josiah's pulmonary valve stenosis is better!!  He went from a moderate (almost severe) gradient pressure to a mild gradient pressure.  Now we don't need to see cardiology for another six months!!

Josiah's Bones and Muscles
We have been concerned about Josiah's hips because he always sits sideways and doesn't like to move one of his hips in certain directions.  Because of this issue and a few others, we recently added an orthopedic doctor to our long list of specialists.  In December Josiah had a xray to look at his hips and leg lengths.  Both looked great!!!  Another blessing!!!  If something was wrong with Josiah's hips it could have led to a major bone surgery.  Josiah's hip is tight and so we just need to work on stretching those hip muscles.

Josiah and Growth Hormones
We were under the impression that Josiah needed possible growth hormone treatment for medical reasons.  We had yet another appointment in December with endocrinology.  We were informed that the main use of growth hormone therapy is to be taller.  It might help him gain muscle mass and therefore help him crawl, walk, run etc.  It might increase his appetite and help him gain weight.  But it might not do those things.  We don't want to do growth hormone for cosmetic reasons only, but we also want to be sensitive to feelings he may have later in life for be abnormally short.  And for a male those feelings may be pretty strong.  We are teaching our children that they were each uniquely created in God's image and everything about them was designed just the way God wants it to be.  But then there is a small part of me that would feel so bad if Josiah is disappointed later in life that we chose not to do the growth hormone treatment.  If we start when Josiah decides he wants it, the results are not nearly as good.  The earlier we start the better.  For now we are opting out of the treatment.  In this next year we will get a second opinion and then make some decisions.  Just pray that God guides us in the right choices for Josiah.  He knows if the treatment would also help him gain weight and learn to walk and run, etc. 

Wrapping up 2010
Craig is still working for URS as a mechanical engineer.  That is a huge blessing because in the last two years they have made some major cut backs and laid-off numerous employees.  Craig still has his "high school sweet heart" which is rusting all over and comes down with a new problem at least once a month (he would argue much less often than that).  By the way, I am talking about his '85 Toyota 4Runner.  In October he was inducted in to the Colorado School of Mines Hall of Fame for the 2004 RMAC Champion football team (I might add he was offensive captain that year).  To sum up the year in Craigs words, he would say he is "liv'n the dream". 

Iylah played soccer for the first time this last fall.  At the time, she liked soccer but it was not her favorite.  We asked her if she liked chasing the ball or the other kids more and chasing the other kids and giggling was the point of the game in her eyes.  In November she began ballet and tap which she seems to be enjoying more than soccer.  However, she enjoys memories of things she does more than when she is acctually doing it.  She now says that she loved soccer and wants to play again.  I have also realized even more in this last year that she is such a people pleaser.  After she does something that she is not supposed to do and has already been disciplined she will still be sobbing in worry.  I will try to calm her down and say, "It is ok, now you can remember next time to do this or that instead".  She will still be in tears almost inconsolable and I will ask, "Iylah, what is wrong?".  Hardly able to talk, she sobs, "I'm afraid you're mad at me".  She is so compassionate but worries so much about the approval of others.  Iylah is still so very shy, takes a while to warm up to people, is a homebody and in general she is very quiet.

Iylah works hard for the approval of others, Josiah, on the other hand, is a hard worker for himself only (and sometimes for the approval of Iylah).  He works hard because he wants to be moving freely and independent.  Josiah has pulled himself up on things a few times and he is getting very good at crawling.  We are working on crawling upstairs, walking, feeding himself, speech, and signing.  He can say Mama, Dada, Nana, Iylah, out, Izzy, water, yeah, no, hi and apple. He signs drink, eat, milk, bath, please, thank you, all done, animals, dog, light, snow, rain, bubbles, help, car, book, coat, hat, pour, cereal, cookie, music, night night/ bed, more, play, big, small, poop, star, hi/bye, stamp, and I love you.  He always wants whatever Iylah is playing with and sometimes Iylah hoards her toys to keep them away from him.  There have been numerous times that I have over heard her say to him, "Siah, I love you but you can't play with this, but I do love you buddy."

As for me, I am still at home with the kids.  I feel like I am constantly busy with appointments, house chores, errands, etc.  I don't know how some families have both parents working full time and still get the day to day stuff done.  For Christmas Craig got me ballet lessons.  I have never taken ballet, but I have always loved it.  Craig has heard me talk about it and knew that some time out of the house would be good.  So I have some adult beginning ballet classes to take (kind of intimidating) :).  I am realizing that I put myself on the back burner and try to do what everyone else needs before I take care of myself.  I do it without even realizing.  This has become habit.  I have also found in this last year that when the kids are not doing well (whether it be slow to learn, sick, whining or fussy, etc) I get so down on myself.  Since they are my full time job, and I don't get a pay check for my hard work, I look to how well they are doing to show me how well I am doing as a parent.  In some ways looking at the children probably is an accurate description of how parents are doing parenting, but really I need to seek all my approval in Christ.

God has answered so many prayers this year.  We are beyond blessed!!  I feel like since Josiah was born I have really had to grow up.  I don't know if part of that is just realizing my real need for God.  I guess before Josiah I would have definitely said that I loved God and had a true personal relationship with Him, but it has not been until these last few years that I honestly believe that I need Him and I am not sure how I would get through life without Him.  Thank you all again for the endless support and prayers.



It's a snowman!

Josiah and Uncle Tay-tay playing drums at church

Soccer trophy

You should see the other guy!...... a few days after eye surgery

Denver Zoo


Craig got fake glasses for Josiah.  Josiah's face lights up when Craig wears them.

Beauty and the Beast for Halloween

Daddy's craft time with the kids consisted of making homemade flashlights!
That's an engineer for ya!



Good thing Izzy is patient.  Iylah smothers her all the time!

After seeing santa Iylah said I forgot to give him directions to our house

Josiah's 2nd birthday and he actually ate the cake and liked it :)

Iylah posing in her new hat

Christmas 2010 (not sure what the kids are doing)

Josiah in his new glasses

I think the helmet weighed more than him!

4 comments:

  1. What a great post. Thanks for filling us in on your family. There's lots to say but I'll jump to the endo discussion - it's a tricky one. Talk with your cardiologist as well and take the genotype of Josiah's mutation into account. For us, Lauren's mutation is on RAF1 which has a very high incidence of HCM. Since it can develop at anytime and GHT has the potential to accelerate the growth, it's not worth that risk of permanent, irreversible heart damage regardless of the social pressures.

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  2. I love the update! Thanks for catching us up - give your sweet kids an extra hug & kiss from us today! :)

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  3. WOW!!! This is truly amazing! I am so proud of you and Craig for all you have done in raising your kids:) This testimony of Josiah and how he is doing really blessed me:) I know life keeps you and me both really busy, but we should try and catch up at some point!:) happy belated birthday to Josiah:) shay will be two here soon they grow so fast:)
    Blessings,
    Alicia

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  4. Love your family! Miss you guys a ton, so great to here Siah and Big Sis are doing well. I think Craig should do the ballet lessons with you.

    Lots of love - josh, tiff, jonah

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