Reflections

It's hard to imagine what could possibly happen w/in the next coming year. Thinking back to this time last year, I could have never imagined that we would be where we are. A year ago we were finally adjusting to Daniel being in preschool, wondering if he would ever really like going to school. Now, he loves school and gets excited to see his friends every Monday, Wednesday, and Friday. Praise God! In a year, Daniel has learned how to write his name (first and last!), add numbers, recite bible verses (amazing!), ride a bike and learn how to become a big brother!

 Daniel in 2010 first day of preschool

Daniel in 2011 first day of Pre-K

  Daniel has grown in ways that show us, as adults, that we can continue to grow and learn, even when our brains seem not to work as well as they did when we were that young! :-)

A year ago we were grieving over a miscarriage.  Wondering if God would ever bless us with another child.  We didn't know what God wanted us to do and wondered if Daniel would be an only child.  I learned that miscarriages are so common, more common that I ever knew.  It made me sad and sympathetic to all of those women who had experienced a miscarriage.  My close friend had experienced one a year before we did and I never fully could understand the feeling of loss, loneliness, and sadness until we had experienced one.  I felt for all of those women who desired to have children but never could, or struggled to.  It brought me closer to God.  During a time where it seems like it would be so easy to be angry at God and to question Him.  I was thankful for His words in the bible and the comfort that those brought me during that time.  I knew that He was to be glorified through it all and I knew that He would be, whether that would be then or later down the road.  One thing I realized was that as women, we are tough and God has designed us to be that way.  Proverbs 31:10-31 explains what a Godly woman is and how we are designed to be; noble, dependable, strong, hard working, hospitable, and confident, just to name a few.  Our responses during times of hardship are what molds us into the women that God wants us to be.  I found that my response to our miscarriage was just as important as my response would be to another time of trouble.  I'm not saying that everyday I chose to be "ok" with what we went through, but I had faith that God had this amazing plan in store for our family and I needed to be patient (yikes, that's hard!) and trust that He would show us His will for our family.  Then came January 18.  We went to a fertility specialist (I'll spare you the details) and w/in a few weeks after that...we were pregnant!  It was like God was telling us "settle down, I have a plan for you and you need to TRUST ME"...if that wasn't ever so clear?!  Then fast forward to June 27.  We found out that our baby has spina bifida.  Yet, another reason to hold on for dear life that God has a plan for us.  Here was another opportunity for us to trust God and for Him to be glorified.  I have a feeling that this one is going to be glorifying God for years and years to come.  I had another opportunity to be a Proverbs 31 woman.  I fail daily at it, but I have many daily reminders of keeping at it and trusting in God to help me be that woman.  It's kind of neat how once you have children, your perspective is so different.  I have a responsibility to take care of these children that God has loaned to me.  These are HIS children and when I think of it like that, it makes me want to do an even better job at my role as their mother.  I see areas in which I fail, daily, and ask God to help me learn my lesson. 
I guess I got a little away from the beginning of this, but I was just looking outside this morning with the fresh snow and bright sun and thinking "it's already almost Thanksgiving?!"...another year has gone by!  Things that I was so worried about a year ago aren't my worries anymore (why did I worry in the first place?!).  Makes me realize (I never learn enough!) that God is in control.  That all I have to do is trust Him and hang on for the ride! 

Change of Plans

Remember from our last post that PJ was getting 2 MRI's and x-rays on Friday?  Well, plans changed.  About mid-week I got a call from the nurse at the hospital that they do the MRI's at.  She began to tell me what the whole process entailed.  She told me that he would be under anesthesia for at least 2 hours and that we would have to be admited overnight for observation.  Remember, PJ is only 6 weeks old and has already undergone surgery the second day of his life.  After the nurse told me that it would be at least 2 hours he would be under, I just didn't feel right about it.  Also, these MRI's aren't medically necessary at the moment, they were ordered just for the dr. to see, basically to get a baseline of where PJ is at.  Right after I got off the phone with the nurse, I called our go-to nurse in San Fran, the nurse practicioner for Dr. Gupta, to see what she thought.  She proceeded to tell me that they have never been a fan of MRI's on newborns and she didn't find it medically necessary to do them right now. PHEW!  I was so relieved to hear that.  She also said because we are monitoring PJ's hydrocephalus so closely with the possiblity of a shunt soon (he would be under anesthesia again) that it just wouldn't be good for PJ.  So, Mitch was on the phone the next morning with the Reno hospital and cancelled those appts.  There is just something about that mommy-intuition that God gives women when something isn't right for their child.  I'm sure that all of the moms out there know exactly what I am talking about!

We had already reserved our hotel in Reno for the night and planned on taking Daniel to monster trucks...well, Mitch and Daniel were going together while PJ and I hung out in the hotel.  We decided to keep our reservation and go anyway.  We needed some family time together and we figured that this would be fun for Mitch and Daniel to do together.  But, OF COURSE, Daniel had to come down with an aweful cold the day before.  He was still set on going to see monster trucks and so we thought that we would just go for it.  The drive to Reno consisted of "Daniel, COVER YOUR MOUTH!"  I think I said that about a million times!  That boy gets the worst cough when he is sick.  I felt like we were in an airplane where you don't get any air circulation.  I had to stop thinking about it because I was getting paranoid about PJ getting sick.  PJ's carseat was covered with a big blanket the whole way down to Reno! ha!  The following pictures are about all Mitch was able to capture during the monster truck show before Daniel had a meltdown and said that he missed me and wanted to come to the hotel.  See for yourself.

Could he look more excited?

Of course he had to get a picture by the Bounty Hunter!  He was able to muster up a little smile.  

 Here he is, about 10-20 minutes later...out like a light.  Mitch said there was even some drool!

Poor guy just didn't feel good!  They weren't even able to stay long enough for the opening acts to be done and for the monster trucks to do their stunts!  I felt so bad for him.  Our night to follow was an interesting one.  PJ woke up at about 1am to eat and so that meant everyone woke up because it's quite the ordeal.  Daniel woke up with a fever of 101 as well.  Oh my.  What were we thinking going to Reno!  The fever was nothing a little tylenol couldn't fix.  Finally, after we all went back to bed, we were all able to get some rest.  Daniel woke up feeling a lot better, but still coughing. 

Even though Daniel was sick on our little trip, we all had a really great time spending our time together as a family.  The past trips that Mitch and I have taken haven't included Daniel because they just couldn't, so it was really nice to be together and not have to be in a hurry to get to a dr. appt or get home because we missed Daniel.  We just took our time, it was great.  Not to mention all of the Christmas decorations all over Reno!  Now if that doesn't get you in the Christmas spirit!  We even bought the new Michael Buble Christmas album! Don't worry, it's still in the plastic.  I'm trying to wait until Thanksgiving to turn it on!  I don't know though...I might just have to make sure it works ;-)

More dr. updates.

Have you ever noticed how cute baby sneezes are?  Just as I was opening this window to write a new blog, PJ, swinging away, sneezed 3 cute baby sneezes.  So adorable.  His sneezes seem to come in rounds of three...a little characteristic of my little warrior.
Last Wednesday-Friday we were in Reno/San Fran for check ups and dr. visists (already?!).  Wednesday was spent (2 1/2 bloody hours!) at the pediatric nuerologists office meeting the dr. and becoming aquanted with him.  He seems like a smart man, but a little out-dated as far as requesting hard copies of PJ's head/hip ultrasounds rather than the disc that the ICN discharge coordinator so politely prepared for him.  I know that doesn't mean he can't do his job, but it definitely dated the doc.  He was very nice and he seems to really be interested in PJ and his condition and also very proactive as far as ordering MRI's and x-rays.  We go down to Reno on Friday for an MRI of PJ's brain and spine and x-rays of his spine.  Please pray that PJ would take the anesethia well and that it would all go smoothly.
After that appt. we rushed out of there because there was a wind advisory for the day and we had to make it over Donner pass still to get to San Fran.  Why is it that when you have to go somewhere there the weather can't just be nice?  Of course there was a wind advisory!  Why not make things more interesting?!  Along with that is time to cath/feed PJ which totals around an hour.  So we felt a little rushed although we had no more deadlines for the rest of the day.  We finally made it to San Fran around 8pm.  Driving our Tundra in San Fran is no easy feet.  We had multiple near heart attacks! ha!  At least I did.  I thought I would give Mitch a break from driving so I drove the last bit and I am not proud to say that I think I have a bit of road rage!  I think Mitch should do the driving from now on!  I think he would agree with me on that one.
Thursday we had a head ultrasound at 11:30.  PJ did so good just laying there...getting his hair covered with ultrasound goop.  It's funny, he kept getting compliments on his hair for the rest of the day and we made jokes about the new hair gel on the market.  When we went to the spina bifida clinic, we were taken to our own room and from there all of the dr.'s that we needed to see (urologist, nuero surgery, physical therapy, orthopedics, social worker, CNP) came in one at a time and checked PJ out.  The nuero surgery team said that PJ's back looks really good and hopefully by the end of this week, we shouldn't have to dress it anymore!  Urology came in and made sure we were doing ok with the cathing situation, which we are.  Physical therapy came in and talked to us about stretching PJ's legs out, making sure he gets enough tummy time to build his back/neck muscles, just like with any baby.  Orthopedics came in and decided that we needed to put PJ in a pavlic harness.  That is a harness for hip dysplasia.  His left hip isn't totally in the socket and if we don't correct it now he'll have problems with hip dislocation when he is older, which we don't want!  So, he is in a hip harness for 6-8 weeks.  See pic below.

The nuero surgery team came in and told us that there is some more fluid between his vetricles than when we last did the ultrasound which was about 2 1/2 weeks ago.  So, they want to do another ultrasound in a month and see where we are then.  One thing I appreciate about them is that they are conservative with putting a shunt in.  They don't want to rush and put it in if it isn't needed.  We are still praying that God would take all of that extra fluid away and not have to get a shunt.  The dr. reassured us that shunts aren't a big deal, but it still is brain surgery and those word in and of themselves are scary!
So for now, we are trying to make it to Dec. 2nd w/o any complications or major concerns.  It seems like it is so far away but I know that it will be here before we know it!

Other than those visits we are trying to adjust (still!) to our new life.  We are grateful and thankful for every day that we have together as a new family.  Daniel has said to me a couple of times "Mommy, PJ is so cute...he should get in trouble for being so cute!"...does that just melt your heart or what?!  It has been so great to see Daniel's love for PJ growing everyday.   Daniel looks bigger and older than ever now days, which I know is because PJ is so small.  It is a bittersweet feeling.  I can't believe that he is going to be going to kindergarten next year!  I mean, where did the time go?!  I honestly can't even think about it w/o getting a lump in my throat and a tear in my eye!  I don't know what I am going to do!
This Friday, along with the MRI/x-ray appt. the boys (Mitch and Daniel) are going to the monster truck show while PJ and I hang out in the hotel room.  You should have seen the excitement on Daniel's face when we told him what we were doing!  He is so excited to see the monster trucks.  I must admit, I'm a little jealous I can't go, I think it would be entertaining just to watch Daniel watch the monster trucks!  It will be good for Mitch and him to have some quality time together, so I will just get over my jealousy ;-)  I'm sure there will be pictures to be posted of their adventure!

On the road again

A thought from Mitch!

I think it was a Willie Nelson song song that said it best: On the road again. As I look back on today that is what it feels like. As we find a baseline for PJ going forward I think that this may be our theme for the upcoming year. And ya know what, that is just fine. This is what God has blessed us with and I'm not going to complain. Heather and I are so thankful to have PJ, no matter the circumstances. However, every day that we're on the road we sure do miss our ham of a son: Daniel.

I'm so thankful to have had this time off from work, 6 wks, to find our groove. I think that we've found our groove with PJ and Daniel at home. On the road is another matter. When Heather and I were first married we were able to travel hundreds of miles on end. The only thing that would stop us was my tiny bladder. When Daniel came along we knocked the mileage back a bit. With PJ its interesting. We're still able to travel the distance we did with Daniel, now we just have to manage our errands. For instance today. We arrived in Reno, NV and went to a store for some belated birthday shopping and immediately had to cath PJ. Which is becoming easier and easier at home. Thanks to Heather it was surprisingly easy on the road. Let me give you an example because I think in this case a picture does speak 1000 words.

Or better yet two pictures speaks 2000 words.

Wipes are essential so are diapers, disposable caths, diaper cream, special powder so his buns don't get too sore.

(This is what I call our "GO BAG" it has everything we need to cath and or change a dressing. God Bless Heather and her forethought. God knew what he was doing putting us together. I forget and she remembers. Sorry honey!)

These pictures dont' do justice to the mobile cathing station Heather was able to set up while I cathed. Honestly it was like she was Meredith Gray and I was Dr. McDreamy in the operating room on the tv show Gray's Anatomy. (Ok so I know I'm reaching. Maybe I'm not McDreamy. Maybe I'm McSteamy. Ha ha yeah, that's it. JK!!!!!!!!!!!!!!!!)
After a cathing PJ in the family bathroom at Scheels sports store it was onto a staple, just a notch below Chipotle, and that was Chilli's, thanks mom. Then PJ had to eat. Then off to check into our hotel. Then its time to eat again. Then onto Dinner, Claim Jumper. Oh so delicious! Good home cooked food. (Why are most of my blogs about food.) Anyways I don't know if I've ever seen this, but Heather gave PJ a bottle and and tried, unsuccessfully to cut her own food. We took turns in the middle of dinner holding him and trying to woo him back to sleep.
After dinner it was onto Costco so that we could buy in bulk and save. (In two weeks we went through almost 500 wipes) God Bless wholesale!

So as I sit in bed watching X Factor and I look over I see my lovely wife and one of my two amazing sons and I realize that whether were on the road or at home I'm blessed. Whether we make it 1000 miles in a day or 50 I'm blessed. (Ok, 50 miles in a day with 500 or more to go would be ridiculous) Thank you Lord for a PERFECT Help Mate in Heather and two wonderful sons with individual personalities and needs in Daniel and PJ.

PJ this morning doing what he does best, RELAXING!

Again, more relaxing. This time he's taking it serious!

So far PJ's mastered sleeping, eating, and RELAXING!

Anyway, friends, and family I should wrap this thing up and get some sleep while I can. I bet once my head hits the pillow he'll wake up hungry. Before I forget I do want to say one thing. Thank you! Thank you to those of you that have been part of God's blessing in supporting us financially as we travel and most importantly thank you to our team of prayer warriors. We know that when we travel Daniel is wrapped in prayer at home and so are we as we. So again from the bottom of my heart thank you so much. These words don't do it justice, but I'll say it again: Thank you!

Ok enough mushy stuff. :) This is me handing the blog back over to Heather. Thanks honey for letting me drop your ratings every now and then. Love ya!

Don't mess with the Dog!

Halloween sometimes seems to be a stressful time of year because in our household, it's never a definite on what you are going to be until the day of.  Never fails!  For the past several weeks, Daniel was insistant on being Woody from Toy Story, until we presented him with the option of being Dog the Bounty Hunter.  Now, listen...I know that Dog the Bounty Hunter is a grown-up character.  Daniel, however, thinks that he is cool because he is a daddy (cop) just like his daddy.  So, he thinks that Dog is pretty cool.  So, he was uber excited when we presented him with that idea.  Did we ever think we would laugh so hard when he was finally all put together, no.  He played the character up pretty well if you ask me.  Just take a look for yourselves.

Look complete with a mullet, arm bands, badge, and those dangly sunglasses thingies that Dog wears.

Don't mess with the Dog!

So, other than our son dressing up to be a bounty hunter, the past couple weeks home has been packed with fall activities and watching PJ like a hawk.  We have a had a great time though.  We have been able to spend some great time with Daniel, something we desperately missed while we were gone.  Here are just a couple snipits of what we did this past week.


The boys carved pumpkins together.  I had the duty of taking pictures and being at PJ's beck and call!

 

One of the best things about fall is all of the wonderful yummy treats that we can make.  We made caramel apples one day.  Oh-so-delicious!

 

Daniel had his soccer party this weekend and he got his very first trophy ever and he was pretty excited about it!  It was fun to just sit in the background and let him do his thing w/o being all in the middle of it.  He is growing up!  He was fine w/o us being right there with him the whole time.  He had a blast bowling with his buddies and eating pizza.

 Here's a little video of Daniel doing a drill.

Here's a pic of Daniel and I on my birthday.  He and Mitch made cupcakes that were so yummy.  He had such a hard time all day keeping secrets from me for my birthday.  I think he did pretty well for a 4 year old!

Here's a pic of me and my boys snuggling and being lazy on a Sunday afternoon.  I am so blessed!

Tomorrow we leave to go to Reno for the ped. nuerologist appt. and then continue on Thursday to San Fran for Spina Bifida clinic.  We will be sure to keep you all posted as to what the appts. entailed and what the next plan of action is.  Hopefully they will be pleased with PJ's foot.  We've been pretty good about him wearing his brace and it's surprising how much it has changed the position of his foot already.  Also, his back is looking great.  There is a little bit of bogginess on the lower-left side of his incision, but the bogginess that they were concerned about in the ICN on the top of his incision is totally gone!  I can't wait for them to see that.  His head circumference is growing at a rate of a "normal" newborn and that is also a huge praise!  We continue to pray for God to continue to keep the hydro at bay, if that is His will.  We have had a few visits from the home nurse who is also monitoring PJ and she is please at what she sees.  God is so good and we praise Him for getting us through these past couple weeks at home with PJ.  They haven't been easy (think newborn and the constant paranoia of SB), but God has gotten us through. 

Please continue to lift PJ in prayer as he continues on his path of recovery and our path of adjusting to his normal life.  Thank you for your prayers.  We will continue to keep you all updated.