Super Hero Cape!

Last week we got a special package in the mail from my amazing friends with whom I grew up, in Florida: Manika Chuon, Colby Roberts, and her wonderful husband, Joe!! We got 3 hand-made, personalized capes!!! 

Philippians 4:13
I can do all things through him who strengthens me.

Romans 8:31, 37-39
If God is for us, who can be against us? 
No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. 

We were shocked and humbled by the capes and so excited to put them on and run around! Living so far away from our families and all the friends with whom we grew up, can make us feel a bit isolated and lonely at times. But these gifts made us feel so incredibly loved and supported!! Thank you Manika, Joe and Colby, for your loving and inspirational capes!!! We can't wait for the weather to finally get nice so we can run around outside with them on! I am sure Mr Boy will be wearing his cape to all future Doctor appointments.

Superhero faces:

A Good Reminder

My mom gets daily devotionals emailed to her every day by Aletha Hinthorn, who leads 'Come To The Fire' Christian Conferences around the country. They also happen to be friends and my mom has shared with Aletha over the years, about our family and what it was like when we first found out about Mr Boy's condition. Today's devotional from Aletha shared a little about our story from my mom's perspective. It is such a wonderful reminder of the Lord's sovereignty and mercy, even in times of great darkness. It was hard for us to see it then, and even sometimes our vision gets clouded when things get tough, but it truly is an incredible honor and blessing to be Mr Boys parents... an honor of which we are greatly unworthy.

What God Said to a Hurting Friend by Aletha Hinthorn The night a friend in Florida was expecting to hear if her first grandbaby was a boy or girl, her daughter called to tell her that the ultrasound showed the baby is not a healthy baby. She wrote, "Don and I cried and prayed with the kids and then we had our usual prayer time. We both were struggling not to lose it. I then walked down the hall to go to a bedroom where I go to pray. As I walked down the hall I was planning on bawling as soon as I shut the door! "I walked through the door and before I could even sit down, the Lord said, 'You are seeing this all wrong. I am giving them an honor by sending them this baby.' With those words He also gave me such a great joy as I saw that it was true. I began praising and thanking Him instead of crying! I was amazed! It was definitely not what I was expecting! I have had some crying moments since then but that deep trust that He is really sending this for good is still there." God can share His thoughts with those He knows will accept His will as perfect. Thank You, Jesus, for the peace and joy that come when we acknowledge Your will to be good and perfect. "Let God transform you into a new person by changing the way you think. Then you will know what God wants you to do, and you will know how good and pleasing and perfect his will really is" (Romans 12:2).

Successful Surgery

Leaving Mr Boy on the operating table yesterday morning was so hard, but the fact that he received some drugs to keep him calm in the waiting room, helped my nerves as well.  Just seeing him so calm and knowing he wouldn't remember it, gave us some peace. He was only a little scared when his mommy had to suit up in her sterile 'space suit,' hair net and mask in order to carry him into the operating room, but by the time we entered the O.R., he was quacking like a duck and happily pointing to the Surgeon and yelling, "Marco!" (Dr. Demarco).

After the first hour of surgery, we hear upsetting news: that the surgery couldn't go exactly the way we had been hoping it would.  But 3 hours of surgery later, the alternative outcome was looking possibly better than the first. We still got what we wanted, which was to eliminate the nightly procedure which caused Mr Boy fear and pain, and we think this was mostly accomplished. Mr Boy had a stitch coming out of his pelvic bone from the last surgery, which was meant to be permanent, but was inching it's way to the surface... which was causing his tissue to inflame and become irritated... which was partially blocking the main exit for his urine to drain out of his bladder... which was probably the cause of his intensely painful bladder spasms he was feeling every night this past week. Since his bones are healed, it was ok for them to remove the stitch and now we can allow the tissue to reduce in size.

In the hospital after surgery. 

The funny thing is that there was a large plus side to the fact that his bladder couldn't drain quickly, causing the painful spasms... it enabled his bladder to stretch out quite a bit and become more flexible. Normal bladders are very flexible so they can fill and void, but since Mr Boy's was inside out and not functioning for his first 2 years, it was very rigid, so when they tried to close it and create a vesicostomy in October, it was not able to be a "traditional" vesicostomy, and it has caused us headaches as it tries to close on us, ever since. Now that it the bladder is more flexible, they were able to make the vesicostomy more traditional and larger, so hopefully this one will not close up on Mr Boy or at least it will give us more time.

Smiling after a little nap, a new little car, and a little morphine.

It was so hard to see Mr Boy in pain this past week with the intense bladder spams. We felt helpless and in the dark. But it's incredible to see the Lord use Mr Boy's suffering for good, to make his bladder more functional. The Lord knew what was happening even when we didn't and had a plan all along.

Romans 8:28

²⁸ And we know that in all things God works for the good of those who love him, who have been called

according to his purpose. 

 

Riding home this morning and SO excited about it!

Unexpected Surgery This Coming Monday

Psalm 46:1-3, 7

"God is our refuge and strength, and ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though it's waters roar and foam and the mountains quake with their surging. ... The Lord Almighty is with us; The God of Jacob is our fortress."

Mr Boy's Easter Egg Hunt

We have been having continual trouble with Mr Boy's vesicostomy ever since surgery in November and have been in to see the urologist regarding this issue a few times, but it just seems to be getting worse.  Yesterday, we decided to take Mr Boy in to see his urologist because of this issue, as well as horrible pain Mr Boy has had the past few nights. He screams and writhes in pain, pointing to his abdomen and yelling, "mommy, daddy, hurt!" We were very close to taking him to the ER at midnight Monday night due to the intensity and duration of the pain. We felt quite helpless, but believe the pain is due to bladder spasms. We have also noticed something prolapsing out of one of his abdominal holes, intentionally left open after his surgery in November.

I was extremely nervous about taking him in, especially since I knew the Dr would cause him pain during the visit.  We prayed a LOT and then I gave him the anti-anxiety medication, (which was prescribed for Mr Boy to take for Dr visits and procedures) for the first time, which made me more nervous, since I didn't know how it would affect Mr Boy and if it would be enough to keep him calm and out of pain, but it worked perfectly!! It kicked in right away and made him hilarious. He was very outgoing, giggly, silly and drowsy the whole time. He even didn't mind being laid on the bed and examined by the doctor. When the doctor caused him discomfort, he would say, "owwww," and then continue pointing out the fun characters and colors painted on the ceiling. It was absolutely wonderful compared to the typical, horrible fear and screaming during visits.  Just knowing that Mr Boy would not be negatively affected emotionally, by this Dr visit, made a load come off my shoulders. Mr Boy was so funny and happy during the visit, I was still giggling and happy even when I heard the surprise that Mr Boy would need surgery.

The surgery is going to be on Monday at noon and they blocked out 4 hours for it, but it may not take that long, it all depends on what they find when they go in and what they decide to do about it. We have a very specific prayer request for the surgery, for an outcome we think will make life so much better for Mr Boy and eliminate the need for the painful things we have to do to him each evening, which make him fearful and anxious about bedtime. If we didn't have to do those things, it would be amazing. We don't want to go into details on the blog due to the private nature of the surgery, so we just ask that you pray that the Lord's will be done and that Mr Boy's quality of life and health be improved.

Introducing his new Sally car to McQueen

Anxiety attack update

Mr Boy's anxiety attacks have continued each day, sometimes happening several times in a day, but the intensity of each attack decreased this week, so paise the Lord!

He has continued to refuse to go to his playgroup at the community center we used to attend, getting very anxious and upset when I mention it. I wasn't too worried about it because its finally warming up, so we have been going to parks this week, but even parks pose problems because there are kids there too!  He freezes up and screams when another kid gets near and won't leave my side. I was hoping the playgroup we went to since January, would have helped with the fear of other kids, but nothing has changed in that respect.

Our pediatrician has been very helpful through all this. He referred us to a counselor whom we will see in a few weeks.  I told him that I've dealt with Mr Boy's crying, fear and pain with countless doctor appointments in the past, but this is different. Since the panic attacks started, I've taken him to one dr appointment and seeing the way he reacted to it when the dr didn't even touch him, I couldn't bare the thought of taking him in, when they have to cause him pain or legitimate fear.  So he prescribed a calming drug for Mr Boy to take just before any future doctor appointments or procedures, and I hope that will be effective. I made a picture book of photos from the children's hospital and specialty clinic and all his doctors, so we can look through it and get excited for future visits.

We are also signing him up for music therapy and Horse therapy (Hippotherapy) for this summer.  I am super excited about both! Summer is too far away.

Please keep up the prayers, we have been blessed by all your encouraging messages throughout the week!

These pictures were taken about a month ago:

Sledding down the hill in our front yard 

Thank you Shari, for encouraging us with this verse: 

For I am the Lord your God
who takes hold of your right hand
and says to you, Do not fear;
I will help you.
Isaiah41:13

Playing on the tennis courts at Lincoln High School, a few blocks from our house.

Prayer Request For Peace

The past few weeks have been a bit rough. About 3 weeks ago, Mr Boy had some pretty traumatic medical stuff done to him and I was the one who had to do it, in our home. It was probably the worst thing I've ever had to do to him, and I was sobbing and trembling afterwards and I wasn't even the one in pain and terror.  Even I can't imagine what it was like for Mr Boy, in his mind. Ever since that day, Mr Boy has started to have panic attacks. They seem to come from nowhere and are very real and intense.  The only way we can stop the screaming/thrashing/panicking is to put him in his crib where he apparently feels safe and he will then refuse to let us get him out of the crib. This sometimes lasts for 40 minutes. Then all of the sudden it is over and he is back to happy, silly Mr Boy again, like nothing happened. We literally tried everything. It's kind of hard to go anywhere for fear of one of these attacks happening in public, we avoid church the most it seems, as it has always been a source of fear for him since it's the only place we've ever left him in a childcare setting. This past week he had one every day. He is also getting increasingly scared to go to the community playgroup we usually attend 3 days a week. This morning when we went, he didn't even leave my arms before we were back in the car heading home due to his fear of the other kids. :(

Mr Boy's Pediatrician, suggested a Child Counselor in town who works with kids experiencing Post-traumatic Stress Disorder (PTSD). I don't really want to believe that Mr Boy has ptsd, but honestly, considering what this child has been through and now that he is old enough to attempt to process what is happening to him, it is a very real possibility. I don't really know how much a counselor will help a 2 year old with his fears, but I do know PRAYER can move mountains and so I am asking for your prayer support for Mr Boy. We realize the real battle is a spiritual one, and are enlisting you prayer warriors for help. We know it's only been 3 weeks, but watching Mr Boy when he is in that state, is painful. Please pray for peace for our son, for all the fears to be dispelled, and however the Lord leads you to pray. Thank you!

2 Timothy 1:7 (ESV)

For God gave us a spirit not of fear, but of power and love and self-control.

Philippians 4:7 (NIV)
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Ephesians 6:12 (NIV)

For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 

The Video Monitor

What do you do when you think no one is watching?
Mr Boy's video (I was having trouble posting it directly to the blog, but here's the link):
http://www.youtube.com/watch?v=dM1PJmHEsKg

It's been a while since I last posted anything,  but it's not for lack of an eventful month. I am just still processing it all. I've written about 8 posts but they are all still drafts because they are either not ready, too personal, too many details, it's not the right timing to post them, etc. The reason I feel like I have to explain why i haven't posted anything for a while, is because I am constantly asked, well, more like begged, to update the blog. Not by tons of adoring followers, but by my mother... like daily. :) You can't blame her really... she's a grandma!