Bye bye head bubbles!

Well we are at CHOA today and Luci is getting her scalp expanders removed. They were inserted on May 1 and have been gradually expanded via weekly fills over the past 3.5 months so now she has a cute little Minnie Mouse head. Below is a picture of the expanders filled about half way.







The weekly fills(sometimes 2x weekly) were not fun and got more difficult as she began anticipating the ordeal but still, she was a trooper!

Here is Luci coming to Today so you can see what they look like completely filled:








We got registered for day surgery and when it was time for her to drink her "yucky stuff" the fun stopped and Nurse Cratchet came on duty. (That would be me!)

Frankly I would pay good money for a couple doses of the "yucky stuff"...and a nice long nap. For some reason the beauty of a medically induced nap is completely lost on 4th olds.

So Luci decided she wasn't going to drink the yucky medicine. The nurse was great, I mean it looked like a rainbow- 3 syringes, pink (versed) yellow(loritab) and blue (Gatorade chaser)... Pretty rainbow nap juice!

She decided she was going to grit her teeth and squeeze Luci her mouth shut and squeal all at the same time. Luci and I have talks sometimes ( mostly before Dr and dentist visits) about doing the HARD stuff. That sometimes we have to do hard stuff that isn't fun...like shots and taking yucky medicine. We also talk a lot about why we cry..and that it is always ok to cry when you are hurt and if you are scared.

Then there are times when we have to revisit this concept and explain the difference between being hurt/scared vs. being pissed off and mad. Can someone recommend a children's book on that topic, " Sally Pitches a Fit" maybe I should write it!

So, Luci wasn't going to open her mouth and I explained that the really sweet nurse could do it or Mommy would and the nurse is really nice and probably the best choice. Nope, Miss Luci would not cooperate so Nurse Newton took over. With her mouth still closed I got the nap juice in and then the Gatorade shot...and she still thought she was going to hold it all in her mouth. Uggghh...it went down eventually but then of course we are left with a 4 yr old that is mad as hell, until the fun juice kicked in!

Then she went 50 shades of drunk and it was hysterical.

Phase 1: tequila mad...Luci Mad! You no like Luci, Mommy mean, blah, blah

Phase 2: whisky luv:...I love you mommy...I jussa wheelie wheelie lub you...

Phase 3: acid trip: mommy what that shiny up there..that shiny, it so pretty, why it sparkly light? That jussa funny mommy, it funny shiny.

...and then they rolled her down the hall...giggly and happy!

Bye Bye bubble bumps...Luci is off to get her Big Hair " like mommy and Jessie, and GiGi"!


Stay tuned for the AFTER...she should be done any minute now!

Posted using BlogPress from my iPad

Luci's progress, Mac's crazy baseball skills

Well it has been a week since Luci had her dressings removed...and like the doc said...it is going to look rough for a while as thejgy skin settles down. As far as we are concerned we are thrilled that we can finally look into those pretty brown eyes. Before it was hard to make contact but now we can see all of her eyes and it is great!


-











And Mac is still giving the stink eye!


The rest of the night...Mac had a complete fit to go outside and play baseball..it was 8:30 at night! He was throwing major fits so his father decided he had a great plan...they go outside and Mac runs back in with his bat, Brian's great plan was to let him play baseball in the house...(and break the two items left sitting on flat surfaces in our house)...thinking he would just throw it faster than Mac can hit it...for all of his intelligence my husband can be a slow learner at times...the speedballs worked a few times and then Mac started cracking them into the kitchen...yes, the full on baseball games in this small house are unnerving but I am very proud of my little genetic freak of nature...it is hysterical to watch a 2.5 year old kill the crap out of a ball thrown fast and overhanded...it is hysterical...and will hopefully pay for his college one day.

Luci goes back to CHOA on Tuesday to get two scalp expanders put in the back of her head the beginning of two months on zero fun but eventually giving her "big hair like mommy".

I will have to pass down the hot rollers to her in celebration...and a can of aqua net.

T

Posted using BlogPress from my iPad

All finished, hopefully home in a few hours!

Well Luci did great and she is sleeping here beside me in the hospital room. When she wakes up we will give her some juice and make our way home. The doc said he things it looks good but to outsiders it will look rou....this part of he rface has been cut on, and squeezed for 2 weeks, it has to calm back down and then start healing.

So...first of all, in case anyone is wondering: why is this woman posting all this info and pics???

Well, I am not an idiot and I am doing this for a very specific purpose...two actually.

1) I know how valuable this is for other parents that have children that will need this type of reconstructive work. The before and after and the ins and outs along the way are valuable knowledge that parents can file away until needed. I know when We were in the process of adopting Luci (and still now) I religiously read the blogs of other parents that were in the process of having their kids undergo pro desires that I knew we might need for Luci. I know it was comforting to see others walking this path and seeing that things turn out well on the other end...and also get good cautious advice along the way from parents.

If you have any questions regarding the doctors we are using or the pro refutes she is having please feel free to email me and I will help you every way I can.

2) I am doing this to document Luci's adventures in life. There is a part of her life that we missed out on. Luckily her orphanage was a great one and we have pictures from infancy through the day we arrived to make her part of our family. I want this part of her life, her story, to be one that she remembers. I want her to know and see what a strong little soldier she was. I know if I think back to being 4 or 5' I remember random things but not a lot of specifics. I want her to know the details of her story. One day she is going to have to have some tough bridges to cross but she can look back and see everything she has been through and realize that there isn't much she can't handle.

She is resilient and I want to document it for her. This child will not be easily shaken.

One day when all the medical stuff is over we are going to have this blog printed into a book and she will have proof that 1) she is not alone and is loved greatly and 2) she is strong and the rest of the world better just clear a path, she's not slowing down for the piddly nuisances!

Until then enjoy following our journey and know we are a resource for anyone out there with questions about adoption or the medical tight rope walk.

Have a great day and thank you for all your prayers and love!




- Posted using BlogPress from my iPad

Back for part #2

Hello everyone! Luci and I are back at CHOA for part 2 of her eye surgery. This is where they take her back into the OR and remove the wires going through the bridge of her nose and take those pads off.

She has been such a champ these last two weeks, never complained about pain once! I kept asking her, poked her face a little she kept saying it didn't hurt...I have to imagine I would not have been as agreeable with pads wired through my nose to my face.

We are hoping for great results, meaning a reduction in the webbing of the scars around her eyes.

For one it would interfere with her vision but it also made it difficult to get eye contact with her, and that is such an important part of bonding and communicating.

I am looking forward to really seeing her eyes when we talk and play.

And let's be real, I want to know when she is giving me that LOOK, you know the look...the "whatever" look...yeah, I need to see that clearly.

I will post the after pics later but the doc said it will take a couple of months for that area of her face to "settle down".







-Doing some math work while we wait.




Got out gown on, vitals are all good, where is that nap juice? Can mommy have some??





Posted using BlogPress from my iPad

Happy Easter!

Day 2 home with Miss Luci is going well. Jesus does love us...among all the wonderful gifts he has given us, today we especially thank him for children's narcotics...God bless the kind scientist that made that little miracle possible.

I am joking sort of...but seriously, I can't imagine children undergoing these kinds of medical procedures without Kiddie painkillers to get them through it.

So it is Easter, a wonderful day that I am finding difficult to explain tho these two little ones.

The toddler version: It is a very special day for Jesus. Jesus loves us very much and he wants us to show love and share our toys and be nice. When we love each other and share with each other it makes Jesus very happy. When you love and share Jesus tells the Easter Bunny to bring you a special treat...and it is hidden somewhere on the back porch. You each get a basket of treats and toys and you have to show Jesus that you can share these with each other and make Jesus very happy.

Ok...so that is as good as I could come up with for a 2 and 4 yr old! Tried to make Jesus the focus...the rabbit just works for Jesus!


-















And something of that Easter story must have stuck because they are seriously sharing and playing together so nicely right now.

Tara

We are still here...

Well, Luci was in surgery for about 6 hours yesterday, I thought it was only going to take 3...since that is what the doc said...so you can imagine after about hour 4 I was starting to worry that something went wrong.

When I finally talked to the OR nurse and asked what took so long, what was wrong she was all confused, had no idea what I was talking about, everything was great and right on schedule.

Then she said...who told you it was going to be 3 hours, when I told her she literally busted out laughing...apparently they do this a lot! She said, "honey, they have absolutely no concept of time, don't ever go by what a doc says when it has to do with time...just tell one of us what they said and we will
translate it into "real people" time?"

So, all went well, perfectly according to plan. The anesthesiologist came back to see me while Luci was in recovery, she said she was usually in cardiology but for some reason ended up here today and it was a very special day for her.

Said little Luci really touched her heart and it was a very special day for her to get to take care of her. I thanked her for taking care of my angel and then she was tearing up...so we hugged...both trying not to cry!

They said we needed to stay overnight..very good call! There is absolutely no way I could have gotten her home, she was out cold! She had thrown up in recovery so they gave her plenty of anti-nausea meds and some fairy dust to keep her sleeping and pain free...wish they would throw a little my way!











She finally woke up, with great resistance around 9:30 and ate a little breakfast and they cleared us to go home!

At home she napped most of the afternoon. I made party bags for she and Mac so they had lots of little what nots to play with when she was awake.

Mac is very physical and likes to play hard...Luci doesn't need to be making any quick moves or have any fast moving objects (like Mac's hands) near her face.

Keeping a little distance between them has been a challenge...luckily Mac will be in school next week and Luci will be home with GiGi.




All is well ...except when we have to put the antibiotic ointment in and on her eyes...that is a screaming crying nightmare but luckily it only lasts for about 6 minutes...we have to do that in the AM and before bed...oh joy.

Until tomorrow...

Tara
Posted using BlogPress from my iPad

Luci & Surgery #1

I apparently am the worlds worst blogger but I am gonna get this thing going again. Mainly so our friends and family can laugh at/with us as we try to act like we are totally capable parents.

Also I want our kids to be able to look back at the posts and laugh at some good memories...I will go back and edit out all the posts where they are making me crazy.

So...News of the Day: Luci is back in the operating room right this minute and having her first reconstructive surgery.

So I got up at 4:45am, and since Luci can't eat or drink anything, neither could Mommy. So it's a good thing that there weren't many cars on the road at that hour because no coffee and no diet coke...I was seriously a walking/driving zombie!

Then the whole process when you get here takes hours....still no DC.

Finally at about 9:30 I got a bottle of my poison and now all is right with the world...I can think and type like a semi-normal person.

We arrived, got all settled into the room, gown on, cartoons on, toys on the bed...then the nurs said that before the procedure she had to squirt Afrin up her nose, 3 different times, at 5 minute intervals. Geez, that was miserable for her the first time...so the second and third time...no way Jose! So we had to hold her hands and head and not so subtly make it happen...grrrr...really don't like this part.

See the deal is that our little Luci is a serious drama queen...like can fall on the floor, break into insta tears over pretty much anything or nothing...then in less than a second turn it off and go on her merry way.

Well first of all if you know me, you know I don't go for this it is ridiculous...but it apparently worked well for her in her past so..heck we all do what works so we have been in the process of learning about crying if we are hurt or scared and not crying BIG over things that are little. She is really starting to get the concept of not making a big deal over small inconsequential things.

Pretty sure we can just trash all that progress...the Afrin thing thoroughly pissed her off and she let us know it...two more times to be exact.

I am guessing she will be going back to the 2 gear motor...IDLE and HELL HATH NO FURY.

We will work it out...I think if any of us had to the stuff some of our kids endure that we would all be showing our less appealing side...way worse than they do.


So today Dr. Walrath is going to try and reduce the scar tissue webbing around her eyes. This will require him to take skin grafts from under each arm and use it to reconstruct the area of her eyes on either side of the nose. He is going to be aggressive about getting this small area done very well this first time and later on down the road he can further any other areas of the eye and nose.



This part is the hard one. Basically it will be a war to keep his work in place. The skin is naturally going to fight like hell to go right back where it was and he has got to prevent that during the healing process. To make sure he wins the war he will place a trans ASAP wire through the bridge of her nose ( she doesn't really have a bridge but that is where the wire is going).

This will be like a tension wire that will be pulling these two pads together on either side of her nose. This tension will hopefully keep the skin in place during the initial healing process. Then on 4/19 she will come back, get knocked out and they will remove the nose wire.

Seriously...can you imagine how not fun the next two weeks will be for her. I know how miserable I would feel if I had face surgery and then a nose wire! Let's just say they would have to drug me out of my mind for the two weeks, diet coke could not take that edge off!



Unfortunately they aren't really into drugging up little kids so - thank goodness GiGi (my mom) will be coming to town to take care of Luci for the next week while Mac is at school and Brian and I work. I am starting to realize that GiGi might be getting the short end of this stick. I don' think the little princess is going to be very pleasant...better make sure there is an arsenal of videos involving kittens, princesses and things that are pink.

This is just the beginning of Luci's summer of NOT FUN!

Like I said above, after today she will come back in 2 weeks, get the wire removed and get to just BE for a whole week and a half. The she as the surgery to put the two expanders in her head. She is actually looking forward to this...well the results of this...anytime you mention Doctor to Luci she says," Doctor give Luci big hair like mommy!"

She is really starting to be aware of hair...and likes it and wants it.

So she is happy about the results we hope to achieve. She has no idea just how not fun it is going to be to get to the end of that road.

That process includes putting in the initial two expanders under the hair growing part of her scalp, then twice a week for 6 weeks we go in and have them gradually filed with saline...gradually stretching them out into two large bubbles on her head. The once they are as big as possible they will remove the expanders and take the newly stretched scalp and put it where her bald spot is currently. This is supposed to allow her to have a head full of her own hair....which would make her very very happy!

So that is what summer looks like for Luci...woohoo!

Oh yeah...we also have to squeeze in some serious dental work under sedation...haven't even scheduled that yet!

Hopefully August/September will start being more fun, less doctors offices. We gotta take this kid to Disney world when all of this is done with! She will have earned it 20 times over!

So...she is back in surgery, luckily we get to go home today, should be home around 4:00.

I will keep updates on here and FB.

Also, big thank you to all our friends and family for the emails, texts, and FB messages...the support, prayers, and love really do make this type of thing easier...Thank you for real!

Tara Newton

- Posted using BlogPress from my iPad