Good Bye South Dakota, Hello Colorado!

It's been a whole month since we sold our home, packed our belongings into a moving van and said "Goodbye" to South Dakota with eyes set on a future in Colorado, close to David's family. 

Dr. Ryckman, Pediatric Surgeon                          Jen Reitsma CPNP (Pedi Surgery)                  Dr. Adamiak, Gastroenterology

                                     Carolyn Dodson, Occupational Therapist      Dr. Julie Johnson, Rehabilitation

Saying "Thank you!!!" and "Goodbye!!!" to a few of his doctors and the Sanford Children's Castle of Care, was a bitter-sweet affair, as we had to leave a hospital and doctors who know Mr Boy inside (literally) and out, and a staff that has been God's hands and feet to our family.  I will miss the fact that all the front desk staff know Mr Boy's name, I will miss the short conversations I have with the free valet parking attendants who remember us because of our frequency to the castle, I will miss the nurses who have become our friends and confidants. There is a lot to miss and a lot to be nervous about going forward: new Doctors and hospitals, etc, but because we know the Lord has orchestrated every moment of this move for our family, there is no reason to fear. Instead, we can look forward to the fresh insights and new programs available for Mr Boy in Colorado.

Since our move, we took a week to visit my parents in Jacksonville, Florida.

Mr Boy did well on the plane:

...and had a blast during his first time at the beach!!!

... and at the Jacksonville Zoo...

...And seeing the downtown by bridge...

...And by water taxi!

We concluded our visit with a trip to St. Augustine to see Fort Castillo De San Marcos.

We are currently living with the oh-so-generous and accommodating in-laws, as we look for a new house. Dave's parents are the best! Please pray that we find just the right home, close to wonderful neighbors and future friends for Mr Boy. 

Hello Colorado! It is a HUGE blessing to now be close to family, including cousins!! 

Z and Mr Boy holding hands for prayer before dinner. 

It is sometimes hard to explain all that goes on in our home, as it's so foreign to most and sometimes private in nature. Plus, sometimes I just don't want to sound whiney. So I have a tendency to make issues that are horrible, sound lighter than they are. Case in point: Mr Boy's hypersensitivity to other kids and some sensory "triggers." I touched on it in my last post, but it was getting to the point that we wanted to pull our hair out and scream. I mentioned before that due to all the awful things that have been forced upon him in the hospital, he developed control issues. He would be happy as long has he had perceived control over his environment.  Anything in his environment that was perceived to be out of his control: ex) me dancing, the curtains blowing in the wind, dust floating about, a new visitor, kids, animals, toys that made too much noise or unpredictable movements, etc... were just a few of the things we knew would surely cause a melt-down of epic proportions. It was not like this 24/7, but Mr Boy would go through seasons or weeks of being hypersensitive and weeks of freedom. 

I say all this because I want to give a lil shout out to the Lord for the good things he has done in our lives. You see, in the weeks leading up to our move and subsequent FL vacation, Mr Boy was the worst he's been in a while. We even cancelled saying goodbye to a few families before we left, because they had kids and we couldn't stomach the thought of Mr Boy's reaction and figured it'd be best to avoid people altogether. :( We were terrified that the move would go horribly for him, and that the vacation would be a total loss to Mr Boy's fears and our frustrations. 

Miraculously, a week or so before our move, Mr Boy became filled with peace and joy like we have never seen in him before. EVER. Since then, Mr Boy has simply blown us away. It was like a switch was flipped inside of him and he became a totally different boy. A boy FREE of his entangling and crippling fears. A boy FREE of the effects of the trauma in his life. We have seen him "get better" and go through seasons of not being as hypersensitive to sensory things before, but this is somehow different. In the past, we didn't like to celebrate these good times because we knew things would get worse once something triggered fear in him and we'd spiral down once again. But this time we are claiming ultimate freedom in his life and are praying this isn't another upswing on this emotional roller coaster. We pray this move signifies not only a physical move, but a spiritual move away from Mr Boy's fears and former triggers. You have just witnessed proof of the freedom in the pictures posted above. Our precious boy could never have experienced any of it without fear and trembling. And there is not just the absence of fear, but the addition of joy and peace! Good bye Anxiety, Hello Joy! Praise the Lord!! 

Philippians 4:6-7

New International Version (NIV)

⁶ Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

No News Is Good News.

It's been many months since I've posted anything, which is so nice! It is a good reason to rejoice when we have nothing to report. We've been busy enjoying a somewhat "normal" season, without many new medical changes. 

But I don't have to think too hard to come up with a few cool things that have been happening in the life of Mr Boy. For one thing, he turned 3!

Since birth, Mr Boy has been in the Birth to 3 program, which has sent therapists (speech, physical, and occupational) to our house every week to work with Mr Boy. As the name suggests, it goes till age 3 and then they re-evaluate you to see if you still need services. If so, you go to a special preschool with therapy. After re-evaluation, they concluded that Mr Boy no longer needs services. This means that Mr Boy is no longer considered, "Developmentally Disabled." Praise the Lord! This basically means that while he still has medical needs, those needs no longer affect his regular development (speech, gross motor, fine motor).

Since Mr Boy was premature and has spent 5 months of his short life in the hospital, it was expected that he would not develop as quickly as his peers. He was spending his time surviving, not developing. So speech, growth, walking, etc would come a little later than most. Not to mention Mr. Boy's leg/foot bones and spine are not like everyone else's so not only should he be delayed due to his time in the hospital, we didn't know if he'd ever be able to walk properly. But here we are, Mr Boy almost 3 years old and he's already considered "Average" with his peers, caught up on every level, speech, gross motor, fine motor etc. It blows my mind.  Having to overcome all those obstacles and still being up to par, makes him way ahead of the game, in my book.

Every parent thinks their own kid is a genius. You can see a kid pick his nose and think, "Ew..." but I can bet the parent is thinking, "He has such comedic timing... !" Or a kid can build a block tower and the parents are thinking, "He's going to be an Engineer!" It's only natural to see your own kid through genius-colored-glasses. And we are no exception. But really... we've decided Mr Boy is a genius. Seriously though.  :)

From September

We started going to Kindermusik. You know those silly toddler music classes that are designed to make parents look ridiculous, dancing and hopping up and down around the room in circles trying to get their toddlers to participate, while they pay exorbitant amounts of money, per class, for something they could easily do themselves at home? Yeah, that's the one. I think of it as paying money so my kid can socially interact with other kids his age.  It's akin to buying friends. It is not beneath me.

Mr Boy playing back in September

Mr Boy has trouble in social interactions with kids his age because kids are unpredictable. He's not as much awkward, as fearful. He likes to fully understand, control and predict the actions of everyone around him so he know's he's safe. He's had so many horrible things done to him in the hospital, you can't blame him for being a little defensive. He's finally great with adults, because they are predictable, but he can't predict what other kids his age will do and doesn't like it when they get close or touch him. They could bump his tube and that hurts. They could bump into him and knock him over.  He is also hypersensitive to some sensory stuff, and kids seem to set that off. Adults don't do that stuff, and he's figured that out, but kids... those peeps be crazy.

Despite that, he's already made lots of progress with Kindermusik. The first class we spent in the hall. He cried most of the time. The second class we were able to sit in the doorway, and now, Mr Boy even joins in the dances when we all run and jump around in a circle like crazy people. It is so amazing to watch.

"Helping" me decorate his Birthday cake (notice the finger pokes and large piece missing)

Mr Boy had a very minor/quick surgery a few weeks ago, and it went very well. Compared to his other surgeries, this one was a breeze... at least for me! All he can remember is that he got a stuffed animal, so he recalls the hospital visit as "fun." Whew... that was the goal! We don't need any more bad memories!

Dr Eeg and Mr Boy, who is clearly hyped up on Versed. We demanded it be ready for us as soon as we got to the hospital, so Mr Boy wouldn't have to be terrified for long. Thankfully that worked.

Last week Mr Boy graduated from 2 orthopedic foot braces (SMO'S) to just one! We thought he would need them both forever, but they think that after a tendon transfer and Achilles heel lengthening surgery on his previously clubbed foot within the next year, Mr Boy will be able to just use orthopedic inserts (like the green one below) for both feet!

Before

Now

These are just some of the things that have been happening the past several months in the Phillips' house! We are praising the Lord for such a nice season of growth and health!

One Year Ago Today...

One year ago today, Mr Boy had his 19 hour and 30 minute surgery, including 8 different procedures, 3 surgeons, and necessitating a one month ICU recovery.

I've shared most the details about the surgery on the blog before, but one thing I never shared was one of my big concerns leading up to that day: How was David going to eat while I spent every second at the hospital with Mr Boy? I knew Mr Boy could be hospitalized for about a month, so I made David one month's worth of dinners. I wasn't being an amazingly kind wife, I was being controlling and cheap. :) I know good and well that left on his own, David would just eat out, and left on his own in a kitchen full of unprepared food, David might just starve. So instead of letting him spend money eating out every night, or starving, I baked 3 huge casseroles and split them up into individual portions with various, already cooked veggie sides, tossed them in the freezer and left detailed microwave instructions. I am still surprised that he actually ate from 3 casseroles for an entire month, considering he is typically tired of leftovers after night two. What a good husband.

I still don't know how we got through that month, how Mr Boy came out of the hospital more outgoing than before, or how Mr Boy started walking again, only days after getting the external fixator bars unscrewed from his pelvic bones. I also never thought the wound that formed as his skin started sloughing off, would ever heal. But months later, with diligent care and dressings, the wound finally healed and Mr Boy's quality of life drastically improved.

I could never thank our skilled surgeons enough. I could never show our nurses just how much we appreciated them. I could never praise the Lord enough for keeping Mr Boy safe and for keeping David and me sane through it all. There were definitely moments when all I wanted to do was run screaming through the halls. I can't imagine how much more Mr Boy wanted to do that!

We are so blessed that we live in a time and place that has the kind of care that enables our son to not only live, but live well. We will always be grateful for this intense surgery but glad it's already a distant memory! Can you believe that the only lasting, negative side-effect of the surgery is that David still gets queasy at the thought of Pepperoni Casserole, Chicken Spinach Bake, or Baked Macaroni and Cheese?

Colorado Trip

How to successfully drive 11 hours in the car with your 2 year old:

1. Buy a cheap table for the car seat for coloring, playing with cars, eating, and movies:

2. Buy some new toys like this sweet Curious George magnet set:

3. Make your own flannel graph:

4. Plan to stop for a long time at a rest area to let your child get their wiggles out.

5. Disregard all previous plans.  -- Leave home at 3:30am, drive straight through without stopping and never play with any toys... then let your insanely calm and precious 2 year old just sit there, enjoying the scenery for hours on end. Bask in the glorious silence. OK, so our drive back wasn't as crazily calm as the drive there, but we never even played with the flannel graph. Didn't hurt to be over-prepared. I call that a success.


      Our 10-day trip to colorado, including a 3 day camping excursion was incredible. It was refreshing to be around so much family, in such a beautiful place. Mr Boy doesn't have many friends his age here in Sioux Falls and is pretty skittish around other kids. So it was a blessing to see him connect with all his cousins, two of which were born just weeks away from Mr Boy.

Tickling his new best friend, cousin Z

Grandpa time

BFF time

Camping near Longs Peak

climbing rocks with some of the many cousins

bonding with his cousin G

roasting his first marshmallow

We took many walks to enjoy the mountainous views

There were many, many, many hugs with cousin A

dirty camping faces

This camping trip would not have been possible without Dave's parents' "house on wheels." I just blended up Mr Boy's meals before we went and kept them in the fridge in the camper. Easy Peasy.

Showing his first blood drawn as a result of rugged play outdoors, instead of from doctors. 

We were so proud.

The video shows how muchMr Boy connected with the family. It doesn't really seem remarkable unless you know just how shy and defensive Mr Boy used to be around people. He used to react to people like an abused puppy. But here you can see just how he's been blossoming lately. We are so proud of him! Praise the Lord!