New House, New Baby and Preschool!

I uninentionally took a break from the blog because I kind of forgot about it! So many great changes were happening in our family, that I was more consumed with experiencing life than writing about it. When I did think about it, it overwhelmed me because sooo much was happening! So I will give a condensed recap of the past half year here. I will elaborate in the next few weeks on a few of these topics, but wanted to get this lil summary out before Monday, when Mr Boy will be getting a cast on his right foot and leg. Details on the reasons for this cast coming Monday. 

After leaving South Dakota, we spent 3 months in David's parent's home before purchasing a new house of our own in Aurora, Colorado. 

View from our backyard

One month after closing on our house, Mr Boy became a big brother when I birthed this amazing lil thing:

"Skittle" - Born June 14, 2014 - 4lbs 13oz

Can you tell Mr Boy loves her? :) He is an amazing big brother!

And after a summer filled with exciting adventures...

Getting into a pool for the first time!!!

Learning to ride his tricicle for the first time! 

Annual Family Camping Trip

lots and lots of this

Library visits and about 1 millions books

Parks almost every day

And meeting 8 new doctors... 

Brave and happy at all his Doctor appointments, even when he was apprehensive. SO proud of him!!

He collects hospital bands. I had to remove some that were giving him a rash after a few weeks. Ew.

This awesome ball contraption in the lobby helped foster his love for the Children's hopsital of Colorado or as Mr Boy calls it "The Hospital with the Balls."

...Then Mr. Boy started Preschool!! 

Official school picture

Preschool Portable

Working on homework.

I will definitely elaborate soon on all the incredible developments since Mr Boy started Preschool. Just know that he loves it, begs for it everyday and is thriving!!

The Glory of Stretch Marks

As you may already know, I am currently pregnant with Mr Boy's little sister! We've been busy with selling a home, moving states, buying a new house, etc... so this poor lil baby has not recieved much attention. (And she won't get much attention in this post either becuase it's mostly about ME. :) ) I was struck today by the fact that I am already in my 28th week! Mr Boy was born at 29 weeks, just one measly week into my 3rd trimester, so I can't believe I am only 1 week away from the same gestation. It's unreal. Thankfully the doctors are taking extra precautions to keep this precious life inside me as long as possible, with cervical ultrasounds every 2 weeks and weekly progesterone shots, which David has the priviledge of administering via my rump. I am determined to take this baby to the finish line.

As I reflect on Mr Boy's birth, I remember how early and traumatic it was. I remember the chaos and speed with which he was whisked away before I even had a chance to see him. I remember how small he looked. I also remember funny things like the smell of the hand soap we had to scrub our hands and arms with for 3 minutes every time we entered the NICU. But the weirdest thing I remember is that I didn't have any stretch marks. I didn't get to experience the inside-out belly button phenomenon some women get in the last few months of gestation. When women reminisce about their pregnancies or commiserate about the last trimester... when they couldn't eat without refluxing, or peed every 5 minutes, I can't relate. And when mothers talk about how many months and sometimes years it took to lose the post-pregnancy tummy, I have to admit that I was back to my old weight and form within one month (with the help of lots of stress and anxiety). *I would not recommend this as a fitness plan.

I must confess that I am feircely jealous of mommies who carry their babies full-term.  I'm envious of stretchmarks and post-pregnancy pooch. When you have your baby prematurely, it feels like someone is stripping part of your motherhood away. Somehow you didn't do it right. Part of my pregnancy and motherhood experience was robbed from me... 1/3rd of it to be exact. And I am eagerly looking forward to the next 3 months with this pregnancy, when I can earn those badges of honor, fulfilling my pre-birth duities as a mother. I couldn't be more excited!

It's true... stretch marks can be unsightly and undesirable. But they are also a sign of motherhood. You worked hard for those marks. Battle scars. Like a soldier's insignia. Your skin went to it's limits and beyond, to carry that life. It's actually pretty incredible if you think about it.

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?