Expansion Journey #2

Preparing to watch their first Homecoming parade, days before surgery! 

On September 28th, the boys had their second set of expanders placed.  Tegan had three placed, one in the back of his head, one in his neck and one in his forehead.  Corban had two expanders placed in his back.

This is how Corban's back looked just before round #2.

This is how the expanders looked the day after being placed, one on the left and one on the right side of his back.

This is Tegan the day after surgery, not a happy camper.

     

 (Above ) This is about half way through expansion.

     

    

(Above ) At their max

     

Good 'ol Papaw joins us on surgery day for entertainment and moral support!

   

Corban post surgery.

And drum roll.....Tegan's amazing results.....

And Tegan, today after removing all drains and a bath!  

Below is a before.

Once again, Dr. B has amazed us with his abilities.

Praising the Lord that we had a smooth round of expansion!!!!

Time to catch up...

Life with 6 kiddos sure does make time fly, so much so that there has been little time for me to keep up with this blog.  Where should I begin....

Well, on top of everything, this spring I decided to apply to grad school and after 3 months of my application getting misplaced, I was accepted in early August to a 100% online program to earn a Masters in Social Work!  I started my first 8 week class August 27th and just finished my second class on December 16th!  Earning A's in both classes!!!!  Now that I'm half way through my winter break, I've found a little bit of time to do some catching up on the boys' progress.

Corban and Tegan began three day AM preschool just after Labor Day.  This took some adjustment for Corban who struggles with changes that aren't done on his time and for his teacher who I'm sure has never had to work with a child who has been has strong avoidance behaviors, as I knew it would be.  Tegan fell right into the routine and loves it.  He admires his teacher, Mrs. B, and tells me often how pretty she is.  We are thankful the preschool has been willing to work with us and Corban's concerns.  

First Day of Preschool!!!!

On September 28th, Corban and Tegan had surgery, in Chicago, to have their second sets of expanders placed.  I'll make a separate post about that.

On October 10th, Corban's big brother, Michiael, and I took him to the University of Iowa Clinic to have an Autism evaluation completed.  It was a long day of testing.  In the morning, we spent over an hour with a pediatric physician answering many questions about the mannerisms Corban presents that brought us there and his history.  We then had about 90 minutes for lunch and returned another few hours with a psychologist and speech therapist.  Thankfully, the latter two worked together, completing the appointment sooner than we anticipated.  We received reports from each of the specialists about 2 weeks later.  They did not diagnose him as autistic but said that he had strong concerning avoidance behaviors.  Anytime he is pressured to do something new, that is not on his terms, he throws a huge fit, will hit is hand (or sometimes just a finger) on something saying "owe" to seek attention.  He had other behaviors before this (throwing himself backwards to the floor, hitting himself in the head with a toy) but those faded and this one started about May of this year and we saw it many times a day.  

At home, this behavior has not worked to his advantage and the psychologist agreed with how we were dealing with it.  We ignore the behavior, not feeding him the attention/response he was seeing and continue to work with him in completing the task presented to him.  With new people he encounters, he tests this behavior; therefore, we have to tell people not to give in to him.  This presents a challenge at preschool because there is only one teacher for 8-10 (depending on the day) kids; therefore, she does not have time to be persistent with him, we tried to make this point with AEA in May during his initial evaluation meeting, but they thought exposure in a regular preschool would be all he needed to make progress.

After a few weeks in the preK, the AEA contacted us about checking in on Corban to see how he was adjusting.  After observing him, providing the teacher guidance on working with Corban and then the reports from his autism evaluation, they quickly decided they needed to do a reevaluation because he was not progressing like they had hoped he would.  (When they called me in October, seeking permission to do the reevaluation all I wanted to say was "We told you this is what was going to happen," but I instead did a little happy dance and said "most definitely because we were going to request you do a reevaluation") Don't take this wrong, I wanted Corban to succeed but after seeing, what we already knew was likely to happen, my heart broke that we had wasted all this time.  All I want is what is best for Corban and right now that is a special education preschool equipped with adequate staff and teachers who know how to work with "challenging" behaviors.  Thankfully, we had his IEP meeting on Dec 12th and he has been accepted into the program and will begin on January 7th! YAY!

Batman (Corban) and Spider man (Tegan) for Halloween!

That is the quick overview of what has happened over the past four and a half months.  I will do more specific posts following this one.  Thank you for checking in on us even though it's been quite.  God Bless!

Progress...

Corban has really come out of his shell over that past few weeks.  He seems to be "putting this and that together", better understanding the world and how things work.  He has been playing with toys more in the way they are intended rather than just sitting and spinning the wheel or rhythmically rolling it side to side.  He is pointing out things he sees and calling them by name (car, airplane, train, door).  I can't wait to see how much progress he makes once preschool starts.  Jason was gone for most of this week, upon returning yesterday it didn't take long for him to notice the progress Corban has made in just 4 days.

So what's happened over the past 3 months...  Tegan and Corban are now potty trained.  Yes, Corban surprised me!  He is beginning to state when he has to potty (the way he says it is cute)- this has been the hardest part, getting him to vocally state he needs to potty.  It is beginning to help that on occasion he his "holding himself" when he needs to go - YAY.  It is always encouraging to me when he does things that seem to be "natural" things kids do.  

The closer we get to the autism evaluation we have set up for Corban, in October, the more I wonder if he just needed time to adjust and catch up.  Either way, I think we will go through with it to be sure.

In July, our family made a road trip to Texas for the biannual  Nevus conference.  It was an amazing experience!  We met many fabulous families and learned great information.  We look forward to going again in 2 years!

At the end of May, we had Corban evaluated by a private speech therapist so he could continue to make progress over the summer.  The program through the school system only works with him during the school year.  Our insurance is very specific on circumstances in which they will cover speech therapy - either it is needed due to an injury or due to a medical reason.  Corban's autism evaluation isn't till October so we don't have a diagnosis but the speech therapist were able to do an evaluation that they submitted to our insurance company to seek approval.  Finally, at the end of June, we received a letter from our insurance stating they would cover 60 sessions for the remainder of the year!  PTL,  they saw that he really needed some help.  

Our four oldest kiddos return to school on Monday.  I am looking forward to the house being a little quieter and less chaotic but I will miss all the extra hands.  They really are a huge help with Corban and Tegan.  I'm sure Corban and Tegan will miss them during the day.

On the flip side, Corban and Tegan will also begin preschool 3 days a week after Labor Day.  I will also be going back to school.  In April I felt it was time to consider going back to school so I can start working once the boys begin elementary.  I was accepted into a masters of social work program earlier this month.  I begin taking classes for the program on August 27th.  Currently, I am working on completing a human biology for social workers prerequisite.  I to write 14 essays, one for each chapter of the book.   As of today, I have 6 of them complete.  May ultimate goal is to have them all done by the 27th but I didn't accomplish as much this week as I had hoped.

The journey over the last 9 months has not been easy but there have been many joyful, happy heart moments.  My patience is challenged at times, the Lord knows this is a difficult area for me.  He also seems to know when to throw a happy heart moment in to make it all seem worth it.  Slowly, I am learning to keep myself "glued" together.  

Next week, a whole new routine begins.  I have a feeling time is going to fly with all the running here and there.  It's inevitable with 6 kids. 

Lastly, the all three of our nevus owners are scheduled for surgery on September 28th.  Corban and Tegan will have tissue expanders placed and Angel will have a few small areas excised.  What a busy time that will be.  They will all three go back for surgery on December 21st as well.

Thank you Lord for my kids, they keep me on my toes and make my heart smile.  I am blessed that you have entrusted me to care for Your children.  What an honor.  Forever praising Your Name!  Amen!

A Mother's Love...

With tomorrow being mother's day and then soon all three of our adopted children's birthdays, I think about each of their mothers.  I am grateful to them for choosing to have these babies and giving them the opportunity to live.  My heart breaks for them and the choice they had to make and the heartache they must feel as the birthdays near.  I cannot imagine the "weight" they carry.


My prayer for these mothers: 
I pray for them to have peace, that they would know deep down in their soul that their children are cared for and loved.  I pray for them to have strength because they did what they knew they had to do for these children to have a good life.  I pray for them to have hope, that they would come to know Christ and feel his presence among them.  My heavenly Father, I pray your hand upon them as I pray these things for them - Amen!


I dedicate this poem to Angel's, Tegan's and Corban's birth mothers.  I made a few changes (original words are in parenthesis), to read as if I were reading it to our children: 

Your (My) Birth Mom

© Emily E. Adkisson

Loving and gracious the
Women I've never met.
She made a difficult decision and
She will debate that decision for the
Rest of her life.
It was something she knew she had to do
She did it with
A Mothers Love.

She thinks about you (me) everyday
Every birthday, Every Mothers Day
Hurt will always be there.
You (I) would not be the person
You are (I am) today without
A Mothers Love.

I can never thank her enough
For all the pain
She must go through
To give you (me) a wonderful life
She had to show the biggest amount of
A Mothers Love.

Source: My Birth Mom, A Mother's Love, Adoption Poem http://www.familyfriendpoems.com/poem/my-birth-mom-a-mothers-love#ixzz1ugZzTxue 
www.FamilyFriendPoems.com 

7 Weeks post Grafts

I know I'm a little slow on the blog, my intentions are good but life with 6 kids keeps me going and easily distracted.

The boys have healed well.  I removed all of Tegan's scalp stitches on my own - impressively he sat pretty well for it.  Thankfully it didn't take long to do.

Corban's on the other hand were a different story.  At two weeks out, which is how long they wanted us to wait, many of his stitches were starting to be embedded in the skin. Thankfully a retired nurse from our church offered to assist in removing them.  Good thing because it was not an easy task and took about an hour to get them all out with his squirming and all.  She had brought along some homemade chocolate chip cookies, Corban didn't want anything to do with them.  He was just ready to be left alone.

As of today, we are still wrapping Corban in an ace wrap. A nice chunk of the graft (about 3" long and 1 inch wide") died on the lower left side and supposedly the compression of the wrap along with the cortisone we've been putting on it, for the past 3 weeks, will help it heal faster.  I can finally say that in the past week, we have finally seen improvement.

Tegan has healed really well, thankfully no issues with him.  We had plenty of that before this last surgery.

Here is what Corban's incisions looked like April 1st, you can see on his left side (the right picture) the start of a hole in the corner of the flap.

Here is what the incisions looked like 8 days after the above photos:

Here is what it looks like as of  earlier this week :

                            

I hope this will be the last week we have to wrap him with it warming up. He can get quite hot with all that extra cloth on him.

We have set dates for their next set of expanders, that will happen on September 28th.  Then they will be removed  on December 21st. We do know that Tegan will not get an expander placed in his next this next time, Dr B wants to wait till next year to try the neck again.  Wants to give it plenty of healing time.  I'm not a huge fan that he has to sport then not so pretty scar for that long but I know doc knows what he's doing.  

I know many will think we are crazy doing it so close to the holiday but we don't want them missing too much preschool due to the multiple 2 week recoveries so we are utilizing Christmas break and I'll have extra hands to help entertain them.

Amazing surgery results...

Monday's surgeries were a  big success.  Corban's surgery began shortly after 7:30am and he came out around 10:15am.  Tegan went back about 10:45am and came out around 1:30pm.  Both came out of anesthesia easier than last time.  Corban couldn't sit still in his bed by dinner time and ate a decent dinner.  Tegan, on the other hand, was still not interested in food till about 9pm but they were able to give him oral pain meds and he kept them down, so that is a huge change from last time. 

Dr B was able to remove a nice portion of Corban's back Nevus, down to just below the waistline. And it's amazing how different Corban looks without the cute spot in the middle of his forehead - makes me miss it already. Check out the before and after of this back: 

And without the spot on his forehead:

Dr Bauer did some amazingly, creative work on Tegan.  Tegan's left eyebrow was enveloped with Nevus.  I had briefly wondered what should be done with it, completely remove it, leaving him with no eyebrow or leave the eyebrow with the Nevus under it.  Who knew there was a third option, well Dr B did.  Since Tegan's tissue expander was just above the eyebrow, on his right side, Dr Bauer made the incision in the middle of his right eyebrow (taking it down the middle, the long way) and shifted it over to make him a new left eyebrow - how amazingly, creative is that? I had never even thought of that as a possibility.  God gave Tegan deep eyebrows for a reason!!! I can't wait till everything is healed so it can better be seen.  We are completely amazed and grateful for Dr Bauer and his expertize. Without further ado here is Tegan, before and after:

Wow, look how much he has "grown up" in the past 3 months. The "before" pic was taken in December. He has gone from "baby face" to big boy. 



 We have many stitches that we will have to take out next week.  All of Corban's and some of Tegan's.  Once again, I am thankful for nurses, who go to our church, that are willing to assist us! So appreciative that God know just who to put in our lives.

Expander removal on Monday...

Quick catch up on the past week.  As of the last post, Tegan's expander was beginning to show. By Monday morning, last week, his expander was ready to come out.  With the help of a friend, who is a nurse, the expander was removed. I am so very thankful for her assistance because I'm really not sure I could have done it.  I was also glad I was able to hold and do my best to comfort Tegan during this. I don't think it hurt but probably caused him some discomfort, on top of being scared.  So glad that is over with. Tegan has not been in any pain or discomfort in his neck, since.

This evening, we did the final fills on the boys expanders.  Unfortunately, I won't get any new pictures posted but wanted to post the final fill numbers for those who have been following along, wondering just how full we got them.

We got Tegan's forehead expander filled to 197, our goal was 250. The back of his head we got to 375, our goal was 350 (yay!!!!).

Corban's forehead expander is at 80, our goal was 70 (yay!!!). His left back expander we got to 795 and right back expander to 783, our goal was 700 (YAY YAY YAY).

This coming Monday morning, the boys will each go in for surgery.  Corban is scheduled for 7:30am, we are supposed to be at the hospital at 6am (I'll shoot for 6:30, he's the first surgery, not like we're going to go in any earlier). Tegan is scheduled for 10:40am, he is supposed to be there by 9:15am.  I presume Corban's surgery is projected to take close to 3 hours. I am not sure how long Tegan is scheduled for, probably close to 3 as well. The boys will spend the night in the hospital and we will head home on Tuesday.

Please pray that all goes smoothly.

If you can stomach it - visable bag..

His expander is much more visible today.  I have tied a stretchy gauze around his neck to help support the weight for now.  As you can see, there is only on small piece of skin holding the gap closed.  I don't think it will hold for long. Keeping a close eye on it. Ready to get it out so we can stop worrying about it and he can have full range of movement with his head, once again. 

Will it fall out tomorrow - very likely...

His fragile skin has not been able to withstand the weight of the expander and the skin began to separate in the three weakest places today.  It went from no apparent separation to larger than expected gaps, overnight.  From the looks of it, we will be lucky of the expander doesn't "fall out" tomorrow. 

I am not looking forward to this.  It was hard enough removing the Tegaderm tape, this evening, to clean up the seeping that has come from the openings.  Seeing the expander peeking through just made my heart sink.  I cried right along with Tegan as I slowly peeled the Tegaderm off. It broke my heart that he, we are going through this. 

But with God by our side, we will make it through.  He will heal and we will restart the process again this fall.

Below is a picture of what the area looks like tonight.  It is not for the faint of hearts so if you get queasy, easily, don't look.

The red areas is where the expander is showing through.  As you can see, there is only a small piece of skin left, holding it in. Lord, please grant me the strength to face dealing with this when it is time to remove the expander. This has been the hardest thing to face in this entire, crazy, journey.

Falling expandering in our future? Time will tell....

In keeping it real with the eventful expander journey we've had with Tegan, here is an update.  I emailed Dr B this picture last night stating that I thought a blood vessel had broke open as it appears he has a "blood" bruise.  The email I got back this morning was not the response I was expecting.  He basically stated that the skin is continuing to break down and that he expect it will eventually begin to split open, exposing the expander. GULP.  I contacted his wonderful nurse, Mim, this morning to get a crash course on what to do if this should happen.  She said worse case scenario is it splits to the point that the Tegaderm tape we have on it will not support it and we will remove the expander (or it'll fall out).  If so, we are to gause the area up and wait till surgery time. Since the tissue will have to be removed, it is not usable, it's not an urgent matter.  10 more days till expander removal, hope we can make it without the expander falling out.  Ugh.

There will be no progress made from this expander, they will cut out the dead/dying tissues and sew his neck back up.  We will let him heal for several months and have to give it another go this fall. How disappointing is that?

Another ER visit

We ended up at the ER again, this past week.  This time with Corban.  Thursday morning, after waking up, he kept walking around grabbing at his stomach and whining/crying.  I figured he was having gut pangs, as his routine lately has been a BM mid-morning or so.  He had no fever or other symptoms. He seems to be fine if he was sitting or laying down.  Well the morning came and went, with a normal BM.  Then was lunch time and nap time, in which he was either sitting or laying down; therefore, he seemed to be better.

After his nap, he didn't say a whole lot, we ate dinner and did their expander fills.  Well, after the expander fill, he was grabbing at his stomach again (more to the right side) and would not stop crying - in the midst of trying to play.  That is when I decided I better take him to the clinic to have him checked out.  A young girl from our church had just had her appendix removed the prior week so this concerned me as a possibility.

At the clinic, pressed around on his belly, not really feeling anything abnormal, took a blood draw and did an Xray.  His white count came back within the normal range and nothing noticeable on the Xray.  With the lack of further scanning available there, they referred us on to the ER to have a CT or ultrasound done.  Once again, I made the trek to the hospital, where we spend the next few hours.

At the hospital, the doctor, once again pressed on his stomach. She did not feel anything abnormal and he didn't wince; therefore, she had me stand him up since this is usually when it bothers him.  She wanted to see where he grabbed.  It didn't take long for him to grab at his belly so we noted the area and laid him back down.  She again pressed around on the right side of his belly, then began pressing on the expander, that is when he winced.  She ordered an ultrasound.

The conclusion from the ultrasound was that it appears like the expander may be placing some pressure in the liver/kidney which is likely causing the pains. We were released to go with the understanding that we were to contact the specialist the following morning to find out what he wanted to do. 

After an email to him, that evening, his response the following morning was to alternate Tylenol and Motrin to see if that relieves his discomfort.  He does not think that they are putting pressure on any organs due to how he placed the expander but did say that some kids do tend to become uncomfortable with the large expanders. 

So far, the Motrin and Tylenol seem to calm the majority of his discomfort but it is apparent that he still feels some pain as he grabs at his stomach from time to time, while he plays.  He does not tend to cry out though. Hopefully, that is all the problem is and we can survive the next two weeks, when they will be removed. 

The Lord will see us through, just wish I had some insight as to how it all looks. 

More expander fills

We have completed two.3333 more expander fills on Tegan and one on Corban since my post a week ago.

Tegan is up to 115 cc's in his forehead and 250 cc's in the back of his head. 

Now what is the .3333 for? Well, we had to add a little to his neck expander today due to the expander bag appearing to collapse and ripple from the decreased swelling, which stretched his skin.  Unfortunately, what we added, did not seem to eliminate the ripple.  We are also concerned about a few areas of the Cellulitis areas - not happy with the color.  Currently, we are awaiting response from Dr. B on if this is normal healing or if these are areas we should be concerned about. 

Here is a picture of what his neck expander looks like as of today - forewarning, it looks nasty but only seems to cause him some discomfort when we lubricate it up, to keep it moist.

Our areas of concern are the small purple area below his ear where the ripple is pressing outwards and the larger dark purplish area on the bottom.

Corban's expanders are now up to 60 cc's in forehead and 655 cc's in each of his back expanders.  The kid has really become heavy with all the fluids.  We are about 85% filled on all of his expanders!!!!

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.