Monday, December 8, 2014

Cracking the code of FEAR

      We are slowly but surely figuring this kid out. He's got some pretty interesting fears, but as he gets older and more reasonable, I can sometimes reason with him... at least when the fears are, well... somewhat reasonable. :) All his fears root back to control. When Mr Boy feels like a situation or thing is unpreictable or uncontrollable, he gets upset. This traces back to all the times he was held down in the hospital and had traumatic procedures done to him outside of his control.

       Now I know we told you that when we moved to Colorado, all Mr Boy's fears melted away. Well it seemed as such. But when Skittle was born, Mr Boy lost a lil sense of control and some fears came flooding back. They were still no where near as bad as before, but nevertheless, some fears returned.

      One fear that has never ceased to persist, is that of water. I tried using reverse psycology on him all summer to desensitize him to his fear of water. I would take him to the fountains at the outdoor mall and say we are just going to watch... not get wet. That took the pressure off, gave him back the control and allowed him to choose when he wanted to get wet. We went somewhere with water at least once a week. I also set up a pool in the backyard "just to clean it off." Here is a video of how that went:

      Although we made huge strides toward liking water this summer, Mr Boy still breaks down in tears and starts to throw up at the thought of a bath (we sponge bathe only) and sometimes even the thought of a clear cup where he can see the water moving - wont touch it. Twice in his life we successfully got him in a bath only to have him refuse and panic the next time. Last week however, he saw his sister enjoying a bath and asked if he could get into the baby tub. I said "YES!" as any mother who has never been able to actually bathe her child would… and quickly tossed Skittle from the infant tub (I laid her gently down but 'tossed' is more exciting), and got Mr Boy squeezed in before he could change his mind. He enjoyed a few baths while squished into the infant tub and now will only play in the baby tub from the side of the tub, where he is safe and dry, but even that is still a gain. "No bubbles and no water in the big tub," as Mr Boy says, but at least he is playing in water with his hands in a baby bath. Win.

But we have also gained a lot of ground in other areas:

-At some point this summer, Mr Boy was frightened while playing on his ipad, which he has loved since he was 2, at which point he decided it was evil and didn't touch it for 2 months. I had an epiphany one day and suddenly remembered the incident which brought about this new fear. He had an app open on the ipad which played music in the background. Mr Boy was ignoring it and playing with cars on the floor when he noticed the screen was black (it had gone into sleep mode) but the music was still playing. (This was unpredictable and seemingly out of his control) That freaked him out and he was never to touch the ipad again. I recounted this incident to him and told him "This is why you are scared of it" (he was never able to tell me why he was afraid of it before). I said, "Let me fix it for you," and proceeded to turn the ipad off and on again, "fixing" the problem and then explained why the ipad acted that way, and bam! He has played with it every day since.

Basement Playroom
-Also, since we moved into our home in May, Mr Boy has never played in our basement playroom. All his toys are in there, it's finished and has tons of natural light, so it's not your typical scary basement scenario. Regardless, I just couldn't get him to play with me down there or mention it with him starting to throw up or cry. However, a few weeks ago, I had another epiphany: He got scared once when we were down there for a few minutes gathering toys to bring upstairs because one of the baskets of toys got bumped and a toy started making noise. (This was again, unpredictable and seemingly out of his control). So he and I ceremoniously took the batteries out of each and every toy in the basement and bam! Now he loves it down there!

-Mr Boy also spent the summer in our living room or front yard. He very much disliked the thought of going in the back yard and would throw up (he's an axious vomitter, as kids who suffer from severe reflux can be) and cry if I mentioned it because "there were bugs." This he told me this straight up. We all know there are just as many bugs in the front yard as in the back, but some bug scared him in the backyard, so it was off limits, regardless of logic. This was very sad for me because part of the reason we bought the home was because of the large backyard. We have a tiny front yard, and I think the neighbors were starting to think we were "those weird neighbors" who were always out front. Once fall hit, I was able to honestly tell him that as it got cooler, there wouldn't be so many bugs in the backyard, and bam! Now we play back there everyday!

-And at preschool, Mr Boy never played on the playground. He would walk around on the basketball court while all the other kids played on the playset on the playground. He wouldn't tell me why. But one day last week (3 months into school) he finally walked up onto the playground and went down the slide! Slides have always been a deterrent for him, but he overcame!

      So although he still has some funny fears, at least he is finally able to be reasoned with to a certain degree. He is better able to process his fears and see that they are unnessasary or at least put them to words. This is a new refreshing season. Thanking the Lord for every victory and "epiphany" and for giving us wisdom and insight into Mr Boy's heart.

Wednesday, December 3, 2014

New Colorado Doctors

It took nearly 8 months, endless medical history request forms, 100s of pages of New Patient documents, and countless hours on the phone with our insurance, hospital appointment schedulers and home medical suppliers, but we finally got acquainted with all Mr Boy's new doctors here in Colorado. Here is a list of all those doctors and their thoughts on the future:

1. Pediatrician- Partners in Pediatrics
2. Gastroenterology - Jason Soden, Children's Hospital Colorado
3. General Surgery- Rebecca Jacobsen, Children's Hospital Colorado 
4. Orthopedics - Gaia Georgopoulos, Children's Hospital Colorado
5. Orthopedics - Travis Heare - Children's Hospital Colorado
6. Neurosurgery - Todd Hankinson, Children's Hospital Colorado
7. Urology - Duncan Wilcox, Children's Hospital Colorado
8. Bowel Management - John Bealer  Children's Hospital Colorado
9. Pediatric Oral Feeding Clinic at Children's Hospital Colorado

Medically, Mr Boy is doing AMAZINGLY WELL.  All his new doctors said the same thing…"He is just doing so well for a child with his condition." They were all blown away by his health.  Praise the Lord!!

Monday, October 6, 2014

Re-Casting for the Club Foot

As you already know, Mr Boy was born with a club foot:

A few weeks after birth, his Orthopedic surgeon began casting his foot with a new cast every week for 6 weeks:

After the 6 weeks, the foot looked like this:

After the casting, he was supposed to wear this Ponseti Boots and Brace set for 3 months 24/7, to keep the foot in place.

But… Mr Boy had a separate surgery at the same time and since he looked so pitiful, we didn't make him wear the boots and brace for the full week of recovery. 

Unfortunately, our decision to forgo the brace for one week, caused his foot to bend back enough to make the Doctor re-cast his foot again. :( 

After this second set of casts, Mr Boy wore the boots and brace faithfully 3 months straight and then nightly for years while wearing a brace during the day.  He still wears his shoe orthodic today.

When we met our Orthodepic Doctor here in Denver in June, she told us the foot was still not fully corrected and that Mr Boy would need another series of casts (a new cast every 2 weeks for 6 weeks total). She offered to start casting that day, but I chose to let Mr Boy finish out his summer and start preschool before she began. Plus, it's always nice to prepare your child for something so big. We watched lots of youtube videos to prepare him. 

On his final day with both legs, we went to the circus!
Ringling Brothers Barnum and Bailey: Legends

Mr Boy loved it!! With all his sensory issues and fears, this was such an accomplishment! A few months ago this would not have been possible. 

One last bike ride to the park!
And finally today arrived:

Mr Boy was sooooo calm and excited for his cast becasue he picked out "bright green."

We are so incredibly proud of our brave boy! Mr Boy is blowing us away more and more every day with his newfound confidence and bravery. Praise the Lord for all His glorious mercies!!

Thursday, October 2, 2014

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!!

Thursday, April 24, 2014

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.

Sunday, March 16, 2014

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)
Do not be anxious about anything, but in every situation, 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.