Expander progress...

After 7 rounds of expanding for Corban and 6 rounds for Tegan, this is where the expander totals are:

Tegan:
Neck - 102 of 250 cc goal - we have not expanded this one since 2/9/12
Forehead - 85 of 250 cc goal - this one is progressing slowly
Back of head - 172 of 350 cc goal - we made some big process with the last fill, almost half way

Corban:
Forehead - 52 of 70 cc goal
Left Back - 570 of 750 cc goal
Right Back - 575 of 750 cc goal

Yes, he went from smiling to upset in the time of the snap of a picture.

Corban's are expanding really well and we shouldn't have any issue reaching or exceeding the goal.  We have 3 weeks left till removal surgery, March 19th.  We are uncertain if we will be able to expand Tegan's neck anymore. It will all depend on how quickly the redness fully goes away. We will be expanding Tegan's forehead and back of head every 4-5 days now to help make some progress.

4 Days in the Hospital

Day 1(Saturday) &2(Sunday) in the hospital - Tegan was pretty miserable we kept overlapping the Tylenol and Motrin to help with his comfort though it only seemed to take the edge off.  His temps were up and down.  The expectation by mid-day Saturday was that we would begin to see some improvement; unfortunately, we saw just the opposite.  I thought the redness had become more crimson and that it was beginning to spread a little further then just around the expander. Therefore, on Saturday and Sunday evening he received a second antibiotic via his IV - Rosephin. This was on top of the Clindamycin he was receiving every 6 hours.  His fevers were up and down, reaching 104 at times.

Day 1

His eating was up and down, depending on the fevers and comfort of where he was at in the Tylenol/Motrin cycle.

Daddy's visit seemed to help when crabbiness set in on Monday

Monday, he finally seemed to be perking up.  He ate a decent sized breakfast, his tempurature had been almost normal all night.  The doctor paid us a visit and mentioned the possiblity of going home if he continued.  Unfortunatley, by the noon hour his demenor was beginning to change and he quickly spiked another 104.2 fever, probably the highest he had hit while at the hospital.  I knew then we would be spending a 4th night.  Thankfully, the rest of the evening and night he was pretty normal, the redness was receding and on Tuesday he had really perked up.  When he was finally fever free for 24 hours they told us we would probably be released that evening and PTL, we were!!!!

Good view of the redness.  You can see a ring of normal skin tone begin to show through.

24hrs of fever free means we can go to the playroom!!! A social worker paid us a visit, she took him up to the playroom while I ran downstairs to get a coffee.  Four nights of poor, choppy sleep was getting to me.

As of today, the lower part of the expander is still pretty red but it seems to be fading from top down.  We see a little more skin color each day.  It is no longer warm to the touch, either. We hope the Clindamycin he is taking orally will continue to eliminate the infection.

Trip to the ER

I'm a little behind on the blog so let me do a quick catch up. Since my last post, we have done two rounds of injections on Corban's expanders and only one on Tegan.  Why?

Early in week, following the February 9th expansion, Tegan came down with a little sinus congestion. No biggy, right.  Well, Thursday morning he woke up very cranky and you could tell he wasn't feeling well. He didn't want to eat or really even drink and was drooling up a storm.  My conclusion was that he had come down with the sore throat his sisters had from the sinus drainage. I gave him some pain reliever. He was not running a fever. I put him down for an early nap time as he was really not a happy campers and appeared to be very tired.  Upon waking from his nap, about 3 hours later, I noticed he was a little warm, took his temp.  He had a low grade fever.  

Since he was running a fever, we didn't do his expansion injections but we did do Corban's.  His fever kept going up as the evening went on.  At about 7:15pm his temp was up to 102.5 so we decided I should take him to the walk-in clinic to be sure it wasn't something more than just a sore throat, perhaps he had an ear infection.  We arrived at the clinic registered and sat down. In their bright lighting, I noticed his neck expander.  It looked a bit pink and was warm to the touch. That is when I put it all together. We had been told by Dr. B when Angel had tissues expanders that a common cold could cause a reaction in an expander.  I immediately got on the phone and called Dr. B, on his cell phone.

Thankfully, he answered and told us what he'd like the clinic to do. We were called back while I was still conversing with Dr. B. I told the doctor what the specialist recommended and that is what they did.  He received a shot of antibiotics and an oral prescription, which we took a dose of as soon as we got home. I loaded him up on pain reliever and put him to bed.

Friday morning, he woke up like he had the following morning. I gave him the antibiotic and a dose of pain reliever and he seemed to feel a little better.  Though just as the day before, he didn't want to do anything but sit on the couch and still didn't really want to eat. I kept up on the pain reliever because he was very uncomfortable. Complained that his head and expander area hurt.  As the day wore on, he did not seem to improve, in fact by the evening he seemed to be feeling worse and the pinkness looked red and was hot to the touch and every move you made with him seemed to hurt him.

I thought, it's only been 24 hours, we'll give the antibiotics time to work till the morning and then decide if we should take the next step.  Well, around 9pm my 12 & 10 year old mentioned that they thought the tissue was quite red, not something I would really expect them to realize - I knew then it was time to make an ER visit.  I quickly got into some comfy clothes and whisked Tegan off to the Children's hospital's ER. 

They put an IV line in, took some blood to check his white count and hooked him up to fluids. Within an hour of the hydration, he began to perk up. He was somewhat dehydrated from not eating or drinking much the prior 48 hours.  That was my first realization that we had made the right choice to bring him.  Another hour later they said his white count and inflammation counts were high, they were admitting him for IV antibiotics. Diagnosis - Cellulitis.

While in the ER

I didn't ask questions at the time, figured ok, they'll give him some IV antibiotics and we'll be able to go home Saturday afternoon. Boy was I wrong.

Cellulitis (sel-u-LI-tis) is a common, potentially serious bacterial skin infection. Cellulitis appears as a swollen, red area of skin that feels hot and tender, and it may spread rapidly

About 1am we were finally taken to our room and by 2am we were finally able to lay down and sleep. Due to his complete exhaustion, he slept the entire night without saying a word, till almost 9am. Wish I could have slept that well.

To be continued....

In Memory of Noel Chun Guang

To further honor Noel's purpose on this earth, we have set up an "In Memory" donation fundraiser.  We have chosen to support the Nevus Outreach organization whose mission is Nevus awareness, support, treatment and research for a cure. From Noel's medical reports, our speculation is that a portion of her nevus turned into melanoma which then spread internally.  She suffered through this for over a year.

Would you please honor her memory by contributing?  You can make a secure, online donation at the following link:

In Memory Fundraiser for Noel Chun Guang

Thank you for supporting an organization which is dear to our family and our three nevus owners.

A poem to honor our precious girl because it describes her soul so well....

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.

Priorities became properly aligned.

People gave from their hearts.

Those that were always too busy found time.

Many began new spiritual journeys, some regained lost faith - many came back to God.

Parents hugged their children tighter.

Friends and family grew closer.

Old friends got together and new friendships were made.

Distant family reunited, and every family spent more time together.

Everyone prayed.

Peace and love reigned.

Lives changed forever.

It was good.

The world was a better place.

The miracle had happened.

God was pleased.

The shock is fading...

The shock is beginning to fade and thankfulness for having the opportunity to cross paths with Noel is settling in. As hard as it is to face losing someone, the opportunity of knowing her far exceeds the pain faced from her joining God's kingdom. One day I will be able to give her a big 'ol hug and kiss in our Heavenly kingdom.  Noel, I smile knowing you are by God's side, sweet girl.

Time for me to put my "big girl panties" on and relish the time God has granted me with the rest of my kids.

Thank you all for your condolences and for sharing how Noel has touched your life. Her life touched so many.

PTL for another day!

Heaven has another angel...

My heart is heavy today.  Last night, we received an email stating that Noel passed away on January 27th. We knew this was a possibility but a heart is never ready to realize that news. It lays heavily upon me. 

We are thankful she no longer suffers from the illness that has raged through her body for over a year.  Our prayers have been answered.  She is now healthy and has a forever Heavenly family.  She has a Father who will lavish her with love and tell her how perfect she is.

Though Noel never physically made it far from her birth place, she has touched many lives.  She served a grand purpose on this earth. Her preciousness began us on an adoption journey we had not planned to take. God, knowing her condition and that He would soon hold her in His arms forever, led us to two boys who would needed a long term family here on this earth.  Though my heart aches knowing she was likely not lavished in love here, I know she receives His abundant love in Heaven

If Noel has touched your life, would you please leave a comment.

Your life will not be forgotten sweet girl. I look forward to the day I can hold you in Heaven.

In loving memory -

Noel Chun Guang

Sept 2008 - January 2012

3rd Fill - 2/2

We did their third fills last night, Corban was not a happy camper about it. He threw a huge fit, almost to the point that he almost threw up.  I believe he was more upset that he had to be held and was made to sit still than the actual injections. 

Note: His crying in the picture below is because of the lack of clothing.

After last nights fill Corban's totals are:

Forehead 28 cc's - L back  300 cc's - R back 310 cc's

We made some great progress on the back expanders. We will be over half way with the next fill!!!!

 

Progress is still slow on Tegan but after last nights fill Tegan's totals are:

Neck 82 cc's - Forehead 55 cc's - Rear Head 87 cc's



2nd Expander Fill

We did the second expander fill five days after the first one on January 27.  We did it this soon for two reasons.  One, so we could fit it in our busy weekend schedule since it takes a chunk of time to do. Secondly, because we have fewer weeks, than typically scheduled for, till the expanders are removed - 9 weeks versus  about 12 weeks (which is preferred).  We want to be sure we get to full expansion.
Tegan's process seems quite slow now. The first few fills seem almost pointless since you don't get much injected but that will begin to change here soon. It is quite amazing how the skin begins to adapt. At this point we are less than 25% along in his neck and less than 20% progress on the other two.  Totals now are.: neck - 57, forehead - 44 and back of head - 67. 

 

Corban's on the other hand, are about 30% filled.  I cannot even fathom at this point how big his two back expanders will be when we are done with this process.  I am beginning to wonder how I am going to fit clothes on this kid. Width wise, he has almost exceeded 2T shirts.  Guess I'm going to have to keep moving up on shirts as he gets wider.  His totals after second fill are: forehead 22 and each back is at 225. (The sad face, you ask?  He's not a fan of having his shirt off)

First Expander fill - Jan 22th

We did the first expander fill 10 days post surgery, which is also when we also had to remove Corban's two back drains.  Ten days is the maximum amount of time they want the drains in or there become an increased risk for infection.   

The first fills went about as well as could be expected.  The boys were not thrilled about the process but neither were mom or dad.  It is a long process when you have to fill six expanders. We filled them on the conservative side since the incisions, where the expanders were inserted, were not likely fully healed.

Here are some picture of what their expanders looked like after their first fill:

Guess I didn't get Corban's forehead but here are his back expanders - front and back view.  The two nodules you see in the Nevus, on his lower back, are the ports that I insert the needle into to do the expansions. After the first fill of injecting 35 cc's into each back expander, they are each at a total of 165 cc's, our goal is 750 in each. 

Tegan's expanders after the first fill: Neck is at 38 (250 goal), forehead is at 36 (250 goal) and the back of his head is at 67 (350 goal) cc's

Corban's expanders don't seem to bother him at all.  Tegan is not a fan of laying on the back of his head unless there is a pillow under his head.  Other than that, I think he is mainly just annoyed with the next expander as he cannot turn his head in that direction.  I don't remember Angel being limited in her head movement till towards the end of expansion but I think his is placed a little lower than hers was.