Hinton Family Update

Just a warning...this blog is HUGE! Yes, I know, I haven't blogged in FOREVER! Honestly, this summer has gotten away from me! I can't believe that in just a few short days, my baby will be an official kindergartener. I really don't know how I will be on that day. I am just hoping to make it to the car so I don't embarass Daniel with my emotional outbursts! ha! I am going to try and control myself. There is no promising though. BOO! Ok, let's not dwell on that thought for now. I would like to live in denial for the time being. :)



This summer has been a long, yet short one. It's been hard because we haven't been able to do the normal "summer" activities we've been used to because of PJ's medications. One of the side-effects of one of his medications is over-heating and dehydration. It's been difficult because we have been trying to train PJ to take a sippy cup to be taking in more liquids, but he still hasn't taken to it, so we give him water through a straw for now. But, it isn't enough to keep him hydrated in the heat and cool enough to let him be outside for long periods of time. We did make it the pool once, but the heat has just been unbearable for PJ, so we have been creative with inside activities. We've tie-dyed shirts, played countless board games, watched movies, read, colored...you name it, we've done it! It's been a blessing though because Daniel and I have had a lot of quality time together that I will cherish, especially this coming year. Daniel is my buddy and I am so thankful for our time that we've shared this summer together.



We've recently returned to San Francisco to get an ultrasound of PJ's head and kidneys as well as an x-ray of his hip. This was such a heavy, stressful trip because we were meeting with the nuerosurgeon personally so we could decide whether PJ would be getting a shunt. Just to remind you all, 80-90% of kids with Spina Bifida develop hydrocephalus so sever that that they need a shunt. It's almost a given with this disease. Along with that huge percentage of children, they usually get them shortly after birth or w/in the first 6 months. I held on to the fact that PJ is 10 months!!! 10 months and no shunt so far!  Also, he wasn't showing any signs of severe hydro (vomitting, lethargy, sunset-eyes, bulging soft-spot, rapidly growing head circumference).  The only symptom that PJ has shown so far is having a big head...but have you seen him?!!  We have a big boy on our hands!! haha.  This trip was a stressful one because PJ's shunt surgery was already scheduled for the following day after our appt with the surgeon, we had already had the consultation for pre-op, etc, so we were definitely hopeful, but trying to be realistic as well.  When the dr. came in the office to meet with us, he had WONDERFUL news for us!  He said that the ultrasound showed NO CHANGE since March!  That is amazing news!!!!  The dr. told us that so far, no shunt!  PRAISE GOD!  PJ isn't totally out of the woods yet, but the longer we go w/o one, his odds just get better and better!  In a couple months, we will go back again and this time instead of an ultrasound, PJ will be getting a sedated rapid sequence MRI that will look at his ventricles since his soft spot will be closed and we can no longer get the ultrasounds.  The whole trip and months leading up to this appt I kept praying that no matter what happened God will be praised.  I was praying for strength and comfort that if we got the news we didn't want, that we knew God was in control and He knows what is best for PJ.  Shunt or no shunt, God is in control and we will continue to trust in Him and rest in His plans for our PJ. 

The x-ray of his hip was great as well!  His hip is still in socket and the joint is molding PJ's socket beautifully and it is going as planned from the dr.  The dr. told us that PJ can be out of his brace eventually all day (gradually getting there!) and only needing to wear it at naps and bedtime.  YES!  This summer has definitely been dificult in finding ways to keep PJ happy and content while wearing the huge brace.  We mananged, but we are ever-so-thankful to be out of that during the day!!  And let me tell you, PJ is loving it as well!!  He sat in the high chair for the first time ever the other day and he just about burst!!  He would be in there all day if I let him!!!  Things people take for granted, like being able to put your child in a high chair, have been such milestones for us!  We are so thankful!!

God continues to show us His faithfulness and love for us.  There have been times where we have been frustrated, disappointed, hopeless, and weary, but God has continued to show us, through His word, through the love and generosity of others, that He will NEVER leave us or forsake us!  Just when we get to a certain point of uncertainty, God brings someone or something into our lives to show us His control and love for us.  We have never questioned God's love for us, but, being human, we have times of sadness and worry, but God continues to show us that He is our Father and He is our source of comfort, hope, strength, encouragement, and provision.  I could go on and on and on!!!  All I can say is, GOD IS SO GOOD!!!

Well, there are a lot of pictures below and I'll just let them do the talking about our summer. Hope you enjoy...and sorry for the long blog!! LOVE YOU ALL!

PJ in his highchair for the first time!!!

Mitch and Daniel sleep in the backyard every summer at least once, and here is Daniel helping Daddy get tent ready!

 

Here's PJ at the annual Anderson LUAU at my parent's house...what a fun time!

My parent's got PJ and Daniel Cub's hats when they were in Chicago (don't worry Hinton Fam, we are Twins' fans all the way!) and PJ wasn't too happy about modeling the hat! 





Daniel and PJ!! PJ claimed the corner of the couch to be able to sit up and play while in the brace.



How handsome is my boy?!!  Why can't he be 5 forever?!



Never a dull moment!



Happy as a clam!




Daniel at his last day of swimming lessons!



Proud of getting his certificate of completing lessons!



Diving for treasures!



Once again, in the corner of the couch and loving it!



We took a day-trip to Hinkey Summit and Daniel was being a dare-devil and crossing the creek all by himself!



Country roads!



Relaxing!!



Daniel was fishing with sour gummy worms, inventive, but I don't think he caught anything ;)















Making icecream with Pappy on the 4th of July!



Waiting for fireworks!



Not the couch, but still the corner of something! ha! 



Mitch said that Daniel looked like a future politician here...what do you think?



BROTHERS!

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!