SNOW

Today it's sunny and warm and beautiful out so I figured it would be a perfect day to post some pictures of SNOW!  We only got a couple of snowstorms this winter which is unusual for Nebraska but I neglected to post some of the cute pics of Alexa playing in the white stuff.  So here you go!

My Snow Angel

Alexa and Daddy on the Sled

Walking up the Sledding Hill

Looking down the Sledding Hill

 Sliding Down the Hill

Scooping the Driveway with Daddy

What a Big Helper

Being Goofy

Making a Snowman with Daddy

Putting on the Final Touches

I really prefer this time of year but a little snow here and there is fun too.

Our Roller Coaster Week

It's been a really rough week in our house.  Parker has been sick.  Pretty darn sick in fact.  We spent SIX hours in the ER on Sunday evening and SIX hours in the ER overnight on Monday.  We then spent the late morning on Tuesday at the pediatrician's office.  No one was really able to figure out what was wrong because he had symptoms all over the place but had no fever and his bloodwork looked pretty good.  The symptoms were mostly respiratory based and he was having a hard time breathing and the treatments I had available at home were not cutting it.  That's why we went to the ER twice but they really didn't do anything to help except give him shots of Rocephin (which we now know were for nothing), more breathing treatments, and did chest x-rays (which didn't look to bad).    Turns out my little guy has RSV.  He has been getting monthly injections to help prevent RSV and I guess it's good because otherwise this whole thing could've been a lot worse.  We all think the "croup" that Alexa had a couple of weeks ago was probably RSV too and that's just what it looked like in her.  So...we likely gave her a 10-day course of antibiotics for no reason.

We've been spending the past several days suctioning like crazy, doing lots of breathing treatments, chest percussion, and cuddling.  Yesterday morning was probably the toughest for me because I was alone with Parker and I was unable to get his oxygen saturations up where they needed to be.  His lips were dusky blue in color off and on and although I didn't think we were at the stage where I needed to call 911 I sure didn't like what was happening.  It was frustrating because nothing I was doing was helping.  I turned his oxygen way up, gave him breathing treatments, did his CPT, was suctioning a lot, and even did an emergency trach change.  I couldn't figure out what the problem was but then he started to come up where he needed to be and all was fine.  Sometimes I think he just gets bored and wants to add a little excitement to the mix (just kidding).

To add to it all, on the way out the door for church on Sunday, Alexa fell and hit her head on one of our end tables and instead of going to church we went to get five stitches put in her forehead.  That was sure fun let me tell you.  She was actually a trooper for the whole process except for the actual stitches going in part.  I'm quite sure people two blocks away could hear her screaming!  I'm not looking forward to when they have to be taken out.

Today is going much better for Parker and I've had a chance to breathe.  Our lives are a roller coaster and this last week we were coasting down but we're definitely on the way back up today.  I've gotten two pieces of wonderful news today and it makes all of the craziness a little easier.

First, I spoke with Parker's Pulmonologist's office.  His biopsies/cultures from his procedures came back and did show Pseudomonas (the bug Parker always has in his trach) and RSV.  But it also showed no signs of aspiration.  This is beyond HUGE news.  This means we can attempt oral feeding trials again and I don't have to be so scared.  Now, I do know that Parker has aspirated in the past but since he has been tolerating his PMV (speaking valve) better, I have hopes that we will be more successful this time.

Second, I found out today that the nursing hours we receive so we can sleep at night will NOT be cut.  They had been proposed to be eliminated completely.  This is only the case for the next fiscal year but we will take it!  This has been a huge stressor for us and a big burden was lifted in hearing this news.

This decision had been made a few weeks ago, but I didn't find out about it until today.  I think hearing this good news today was perfect timing coming off of such a hard week and I'm able to appreciate it so much more.  Without having the night nurses here during Parker's illness I probably would've gone crazy.  He requires constant care on a good day but when he's sick like this you can't take your focus off him for a minute and it's just impossible to do 24/7 by yourself.  We definitely would've ended up admitted in the hospital without that additional support from our night nurses.

So, here's to hoping the rest of this week continues to go "up" and that we appreciate and give thanks for answered prayers!

Birthday Cake Batter Popcorn

Two things you should know about me:

1) I love Birthday Cake Flavored Anything (one of my fav's is Birthday Cake Batter Ice Cream at Coldstone)

2) I love Popcorn

So...when I saw a recipe for Birthday Cake Batter Popcorn on the Tasty Kitchen Blog of Pioneer Woman's website, I knew I had to give it a try.  And it was SOOOO good.  It was also SOOOO not good for you but since when has that stopped me?

SOOOO Good!!

If you're anything like me and you love these two things then you NEED to give this a try!!

The original recipe can be found here.

Ingredients (that I used):

• 1-1/2 cups white chocolate chips
• 1/4 cup vegetable shortening
• 1-1/2 cups white cake mix
• 6 cups popped popcorn (I popped kernels on the stove because I was out of microwave bags).  I did add a little bit of popcorn salt when it finished popping
• Sprinkles

Instructions:

• Melt the white chocolate in the microwave. It works best to melt it for 30-second intervals, stirring between each until it is fully melted.
• Add the vegetable shortening to the chocolate and stir until it is melted. 
• Add the cake mix to the chocolate mixture.
• Pour the mixture onto the popcorn and coat evenly.  You can use 2 spoons and toss it like a salad.
• Pour the popcorn out onto cookie sheets or wax paper to cool/harden. Sprinkle immediately with your choice of sprinkles.
• Wait until fully hardened and enjoy!  *Note, I ended up putting mine into the fridge/freezer for a few minutes because it was a particularly hot/humid day and it wasn't hardening as fast as I wanted it too.  This worked very well.

ENJOY!!

Parker's Procedure Updates

Parker prior to his procedures saying, "Grrr, bring it on!"

Parker did GREAT yesterday during his surgical procedures.  The Neuro-Opthamologist wasn't able to make it afterall (we didn't find this out until right before Parker was headed back) so he didn't get the Botox injections in his eye muscles.  I knew I was nervous about the Botox but I didn't realize how apprehensive I really was until I found out it wasn't going to happen.  I was so incredibly relieved and all my anxiety and fears were virtually gone once I knew it was cancelled.  I took all that to mean it wasn't meant to happen - at least not at this point in time.

The rest of the procedures went very well.  Parker had no issues with the anesthesia and bounced back after better than he has ever before.  The GI Doctor and the Pulmonologist thought everything looked really good for the most part.  We are waiting for the biopsies to come back which could take up to a week but they aren't expecting anything too significant to appear.

The ENT involved in yesterday's procedures is the one who put in Parker's trach and she's seen him for numerous reasons and for several surgical procedures along the way.  She knows Parker very well and she was incredibly pleased with his overall progress both in regards to his airway and his development in general.   This was the first time she was able to say his upper airway was actually showing some improvement.  He still has some pretty significant issues (his upper airway is floppy, narrower than it should be, reactive - it swells easily, and is shaped like an oval instead of a circle) but things are looking better.  This is also the first time we've heard any Doctor say, "There's a chance he'll be able to get rid of the trach someday".  This is due to the fact that he is showing some improvement and because there are reconstructive surgeries available to help repair the issues Parker has. Of course, we'll just have to "wait and see"  but this was nice to hear.

Parker also had a sedated ABR (Auditory Brainstem Response) done.  This is a hearing test and it showed his hearing is a bit worse than it was in previous tests.  I was a bit surprised to find this out because I would've guessed his hearing had improved but it may just be that his reactions to sound are increasing.  The little guy also doesn't like to leave his hearing aids in so I'm trying to figure out a way to make him keep them in.  

All in all it was a good day with good news and we couldn't have asked for more.  We got to go home the same day and Parker has been doing very well since.  I'm so proud of my little guy and looking forward to the continued progress and improvements that I'm sure are to come!

Family Photos

I've been wanting to get outdoor family pictures taken for awhile now.  It just never seemed to work out.  Then I learned that one of the Moms from my MOPS group had started her own photography business and her specialty was outdoor photography.  I had seen some of her pictures on her Facebook page and thought she did an excellent job so I scheduled a session with her.

I was very pleased with how well they turned out even if it was pretty windy and a bit chillier than I had planned on.  If you look carefully, Alexa's nose is a little pink in some of the photos because I had my poor little girl wear a sleeveless dress...in the beginning of April...in Nebraska.  She was a good sport about it though and Parker did a pretty good job too.

I'd highly recommend checking out Dillavou Photography or contacting Nickie Dillavou at 402-580-2054 to capture some great family photos!

Here are some of my favorites:

 Thanks, Nickie!  We had a lot of fun and will cherish these pictures for a long time to come!

Raspberry Streusel Coffee Cake

A few weeks ago, a fellow MOPS Mom (Sheila) brought the absolute YUMMIEST coffee cake to our meeting.  It was simply scrumptious.  I asked her for the recipe as I secretly prayed that she would share it with me.  And lucky for me she did.  I was so excited to try it and figured I could make it for one of our Easter Celebrations but for the first time in years, I was asked to bring something other than dessert.  So...I pouted for awhile and then I came to the conclusion that I was just going to make it for my family.  Yep, that's right, I made an entire 13X9X2 pan of yumiliciousness (is that a word?) for 2 adults and 1 toddler.  Paul ended up taking half of it to work because it was a bit much for us to finish off but it was so worth it!  I thought I'd share it with you all too:

Raspberry Streusel Coffee Cake

3 ½ cups unsweetened raspberries

1 cup water

2 Tablespoons lemon juice

1 ¼ cups sugar

1/3 cup cornstarch

BATTER:

3 cups all-purpose flour

1 cup sugar

1 teaspoon baking powder

1 teaspoon baking soda

1 cup cold butter

2 eggs, lightly beaten

1 cup (8 ounces) sour cream

1 teaspoon vanilla extract

TOPPING:

½ cup all-purpose flour

½ cup sugar

¼ cup butter, softened

½ cup chopped pecans

GLAZE:

          ½ cup confectioners’ sugar

          2 teaspoons milk

          ½ teaspoon vanilla extract

In a large saucepan, cook raspberries and water over medium heat for 5 minutes.  Add lemon juice.  Combine sugar and cornstarch; stir into fruit mixture.  Bring to a boil; cook and stir for 2 minutes or until thickened.  Cool.

       

In a large bowl, combine the flour, sugar, baking powder, and baking soda.  Cut in butter until mixture resembles coarse crumbs.  Stir in eggs, sour cream and vanilla (batter will be stiff).  Spread half into a greased 13-in. x 9-in. x 2-in. baking dish.  Spread raspberry filling over batter; spoon remaining batter over filling.  Combine topping ingredients; sprinkle over top.  Bake at 350^o for 40-45 minutes or until golden brown.  Combine glaze ingredients; drizzle over warm cake. 

Enjoy! 

(Thanks, Sheila)

Difficult Decisions

Being a parent isn't easy.  Sometimes I wish I had a crystal ball or at least a very specific instruction manual.  I wish I knew that the decisions I had to make were the right ones and that I am doing the best thing.  Every parent faces difficult decisions when it comes to their children and we are no different.  When it comes to Parker, it's just that those decisions and the issues that we grapple with are a bit different than the decisions most parents have to make for their children.  Our issues aren't necessarily more difficult...just different...and sometimes I simply don't feel competent.

Parker is scheduled for several more surgical procedures at Children's Hospital on April 17th.  This will be the SIXTH time he's been under anesthesia and I've gotta say it never gets easier.  He will be having scopes done and biopsies taken by his Pulmonologist, ENT, and GI specialist.  He will also get another sedated hearing test done by an Audiologist while he's under.  These procedures are scheduled to take three hours.  Agreeing to all of that and another round of anesthesia was hard enough.  But now, another Doctor is recommending another procedure...and why not add it to the others and get it all done at once?  This is what we do.  We keep adding procedures on because we don't want him to be put out more times than he has to.  But, how do you know when it's too much to put a kiddo through at one time?

The most recent recommendation is coming from Parker's Neuro-Opthamologist.  Parker has numerous issues with his eyes and vision and one of them is something called Strabismus.  This is when his eyes don't always line up real well and they sort of wander off to the side.  I usually don't choose the pictures where it's really evident to post on this blog so I'll show you one I took yesterday as an example:

The Opthamologist thinks that he may be able to help this "wandering" by injecting Botox into Parker's eye muscles.  This is a newer alternative to surgery.  He says in about 50% of kiddos that have this done, the eyes will line up and permanently remain that way.  For the other 50%, the effect will wear off and they'll either need it done again or surgery will need to be done.  It's also likely that for a short time after surgery his eyes will over-correct and he will be a bit cross-eyed.  There is always the chance of more serious risks but the Doctor said he's never had any of those happen for him and he has done this procedure many times.  He feels this could be a good option for Parker visually, developmentally, and cosmetically.  Also, the chance of success is higher due to Parker's age and the longer we wait the more likely surgery will be the only viable option.

So, we decided to go through with it.  This decision really stressed me out because I didn't get a strong gut-reaction either way.  Usually I follow my Mommy-gut but this time I didn't know which way to go.  Paul did get a stronger feeling about this than I did so we are going to do it and hope for the best.  Putting your already-compromised child's vision on the line is scary.  We are still waiting to find out if the Eye Doctor will even be able to re-work his schedule around to be able to come during Parker's already scheduled procedures and then we have to see if the insurance will authorize it.  I guess at this point I'm thinking if those things don't work out then it's not meant to be - at least not at this point.

Again, we ask for prayer that we are making the most informed decision we can. That Parker's procedures will go smoothly on the 17th and he will have no problems with anesthesia.  That we keep in mind that we are only making the best decisions we can with the information we have at the time and that we don't regret anything later on.  That we get to hear some good news and good results from the tests that they are going to do.  That we will do a better job of trusting God and turning these decisions and our stress over to Him and know that no matter what He is with us!

Thank you all for your support!  It means the world to us. Parker has been very healthy these past few months (likely because he hasn't been at the Doctor's office as much and we did get approved for Home Health Therapy so he hasn't been out in public places being exposed to all the bugs).  We're hoping that his improved health status will make everything smoother next week!