Tuesday, June 5, 2012

Snow in June?? Only in Nevada!

Yes, the title is correct.  It has been snowing off and on all morning/afternoon! Can you believe that?  Now it is down-pouring.  If you don't already know, Nevada is so unpredictable for it's weather, especially in the spring/early summer time.  I am appreciating it though because our backyard lawn needs all the water it can get!
I know I haven't posted in a while and I am way overdue.  So...here goes nothin'!
Daniel graduated from pre-k...I just can't believe it! The graduation was pretty stinkin' cute. He goes to a preschool at a Lutheran church, so the graduation is held in the sanctuary of the church. All the parents were seated, eagerly waiting their child to walk down the isle (did I mention that they walk down the isle holding their hands in the angle/praying position?...CUTE!) They sang songs that were adorable and even added some dance moves into the mix. Daniel has made a couple of good friends that we are hoping he'll either see during soccer or go to school with. It's neat to see him making friends. They even have nick-names for each other...boys!


Daniel with his teacher, Mrs. Armstrong. 


Mrs. Picket and Mrs. Armstrong have been his teacher for 2 years now...so sad to leave them! 


My offical "kindergartener" and I after graduation



Trying to keep Daniel entertained/busy since school has been out hasn't been the easiest thing.  We've tried a science experiment, baked, played catch, planted flowers, colored, learned a new game...and it's only been a couple weeks since school's been out! I can't wait for the nice weather to permanently be here so we can claim our spot at the pool.  One thing that is nice about Mitch's job is we get free access to the outdoor pool, which we use a lot during the summer! It's been nice taking our time in the morning and not having to rush to get ready for school.  It will come soon enough, so I am trying to be grateful for our lazy summer days!

Mitch has been working so hard and a lot.  The overtime has been nice, but it does eventually take it's toll.  We miss him!  About an hour after he gets home, it's time for bed for the boys, so we try and make the most of his days off...even if it cleaning the garage as a family...we're together and that's all that matters.  I'm just so thankful that God has provided such a great job for my husband.

PJ has been doing good. He is cast-free as of last week!!! Can you believe it?! We were dreading that cast for the longest time...and look, we made it through! It honestly wasn't as bad as we thought it was going to be.

He was laughing at first because of the vibrations, but the noise of the saw got to him!  Poor baby! 


Nothing like chewing on his blanket to give him some comfort! 


Good ridance!  May we never see you again!!

The cast removal was rather quick and didn't take as long as I thought it would.  Immediately after the dr. took his cast off, he was placed in a Rhino Cruiser hip brace, which he will wear 24 hours a day (except for diaper changes and baths of course) for 2 months.  He is so much lighter!  Another great thing is that the brace allows for him to still kick his legs.  His left hip, which is his bad hip, is super tight and sensative.  I tried to move it a little this morning and PJ didn't like it.  We are going to start physical therapy hopefully next week to get that loosened up a little.  His hip is still in, which we are praising God for!  We're not doctors, but on the x-ray, both hip sockets looked more alike than they ever have, which beens his left socket is getting deeper! yay! 
He also got a head ultrasound, which showed no change in the ventricles, which originally we were thrilled about.  His head circumference is concerning in the fact that it has increased 3 cm in the last 3 months.  I don't know what is normal and what's not, but the nuero department told us they were concerned.  We don't see dr. Gupta on spina bifida clinic days...in fact we haven't seen him since we left the hospital with PJ.  We usually just see his team of dr.'s.  I got a call today from the dr. we saw on Friday who seemed alarmed by his head circumference and she just got done consulting with dr. Gupta about PJ's progression.  He is concerned as well.  So, when we go back to San Fran in 8 weeks, we will meet with Dr. Gupta personally to talk about what to do.  Usually with hydrocephalus there are a variety of symptoms:  unusual fussiness, lethargy, sunset eyes, and rapid head growth.  PJ hasn't experienced any of these except for the the head growth and the dr. on the phone today said she has seen patients only exibit the head growth symptom and still get a shunt.  She seemed to be preparing us to be aware that we are leaning towards getting a shunt.  It all depends on the next 2 months and PJ's progress.  It was such disappointing news to hear today because we actually thought that PJ was going to be one of the 10% of kids who don't need to get a shunt...he very well still may be one of the 10%.  We will just continue to trust God and lean on Him for answers.  I was reminded of the hymn "What a friend we have in Jesus"...

What a friend we have in Jesus,
all our sins and griefs to bear!
What a privilege to carry
everything to God in prayer!
O what peace we often forfeit,
O what needless pain we bear,
all because we do not carry
everything to God in prayer.

Have we trials and temptations?
Is there trouble anywhere?
We should never be discouraged; take it to the Lord in prayer.
Can we find a friend so faithful who will all our sorrows share?
Jesus knows our every weakness;
take it to the Lord in prayer.

Are we weak and heavy laden,
cumbered with a load of care?
Precious Savior, still our refuge;
take it to the Lord in prayer.
Do thy friends despise, forsake thee?
Take it to the Lord in prayer!
In his arms he'll take and shield thee;
thou wilt find a solace there.

Isn't that such a comforting hymn?   It all seems so overwhelming because we really thought we were out of the woods for it.  We know that God has a plan for PJ and for us and He will continue to take care of PJ, provide for our family, give us comfort and strength and He will be glorified through it all!  We are learning to be persistant in our prayer...that's what God asks us to do! 

Philipians 4:6-9 "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.   And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.   Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable -- if anything is excellent or praiseworthy -- think about such things.   Whatever you have learned or received or heard from me, or seen in me -- put it into practice. And the God of peace will be with you."
So, really, it's as easy as that...trusting God, relying on His power, not worrying..seeking Him!
Please continue to pray for PJ and that if it is God's will that PJ's head would remain stable, that God would give us peace about the days ahead and not to worry about anything/everything, and that we could enjoy our summer w/o the constant worry of PJ's progress.  Also, we are still waiting to hear if we have been approved for a medicaid disability waiver for PJ and also SSI (social security income) for PJ.  Even just being approved for one of these would help us out tremendously!  Thank you so much for your prayers.  I know it may seem like I may share too much information on here sometimes, but the prayer support is why I do it.  I know that there are so many of you that truly love us and we can count on your prayer support...it's so awesome to hear that there are so many people that are praying for us.  Thank you God for these people!
This blog is getting out-of-control long, so I will end it with a bunch of pictures...some of here and some of our latest trip to SF.  Enjoy!!


Daniel--being a goofball after swimming at the hotel. 


We had all morning before going to clinic, so we thought we'd go to the Golden Gate Bridge.  It was actually the first time we had done that!  Isn't it beautiful?! 



My boys! We didn't make it very far across the bridge...Daniel said "It's freaking me out mom!"...it was freaking me out too!


Daniel wanted to hold PJ. 


 He was watching cartoons like this...crazy boy!


There was fireworks after the high school graduation, so I had to wake Daniel up and we watched them on our front yard! 


In the hotel--I think PJ had enough of all of us and just wanted to go to bed and be left alone! 


All smiles on the way to get his cast off! 


Last picture of PJ in his cast! 


Daniel doesn't seem excited, but he was! 


See?!  He was laughing....at first! 




If you remember from a couple posts ago, there was a pic of him in his diaper and his left leg didn't look like this.  Now, that his hip is in, it looks just like his right leg...and no, he didn't seem to have lost any of his chunky thighs!! yay! 


At the beach after getting his cast off. 


Daniel and Mitch working on a sand castle!

Well, that's all for now!!  Hope you enjoyed the pictures!  I really need to try to blog more often...we'll see if the boys give me any time!


1 comment:

Anonymous said...

To my lovely wife:
Heather, your posts are always so beautiful. Although you bear your heart, fears, and worries you always back them up with scripture and your faith that God WILL provide. Which he will of course. Thank you for these posts. (We've seen His provision so much over the past few months and years) I am encouraged so much by them and I know that so many others. I would not be the man I am today without you and without our faith in the one true God.
I love you so much!
Mitchell
P.S. You're the best blogger I know!