FACIAL CHANGES OVER THE LAST WEEK!

WEEK 3 Post Surgery

The swelling is going down, but boredom had set in.  This is what it had come to.

Saturday of last week Flo had had it.  I think Mark had to.  We had to get her out of the house.  We decided to go to Macon.  We love going to museums down there.  They are rarely busy and the people there are always so nice.  We also really like to go to Mass down there.  St. Joseph's Catholic Church was built in the early 1900's and it is absolutely breathe taking.  We all love it.  Anyway, we took her to the children's museum and to Mass in Macon.

We went to lunch at Arby's, but we had to make a pit stop at Wendy's for Chili.  This is Flo's new favorite treat.  She eats a Frosty and a cup of  Wendy's Chili.  I did not even know that they still serve Chili in the summer time but they do.  Looks gross, smells gross, but she loves it. We showed her how to take the crackers and mush them in the Chili.  She did not know about that.  I cook Chili at home a lot in the winter time, but we normally have cornbread with it.  So, the cracker thing was new for her. We had a great day and I think everyone had fun.  Flo was exhausted by the time we got home and she was ready for bed.  That was a good night for all of us.

We have spent the last week dealing with sleep issues.  Flo has had some issues sleeping.  She just can't go to bed alone.  It is just a little more than the rest of us can deal with at times.  We spent several days trying to get big sis back to health.  She has had some Asthma issues this week.  We spent a whole afternoon at the Asthma and Allergy Clinic.  She seems to be getting better.  I think as the temperature rises her Asthma gets worse. We stayed low key inside most of the week. AG's asthma seems to get worse with the heat.

We did have a mostly uneventful week.  I tried some new food recipes this week.  We are far from Chicken noodle because she is very done with that choice.  I introduced her to steamed squash and we added a shredded chicken to the menu as well.  She seem to be doing well with the soft foods and we have had only one melt down. 

24-hour famine and boiled french fries

First before anyone continues reading this, please pray for Teresa.  She is a little girl that was adopted from China and just had a heart transplant.  She is not doing well and really needs prayer. 


Thank you for praying for little Teresa and her sweet family! 

 What does a 24-hour famine have to do with boiling French fries? 

My oldest signed up to do a 24-famine lock-in type event at the church where she attended school for 7 years.  In the 24 hours the tweens and teens learn what it is like for people in Guatemala and other third world countries who go for days without food.  They originally were going to stay overnight outside in cardboard boxes but because of storms in the area they decided to set up their boxes inside.  Thank you Lord because this worried Momma slept better last night knowing that.

My oldest decided for her last meal before famine time she wanted McDonald's nuggets and fries.  Well, my no French fries girl was totally not pleased with that. Flo went on and on and on how she knew she could eat a fry and AG could check it for her.  I think at one point there was talk of  AG eating it for her and then spitting it in her mouth.  (just kidding, but it was almost to that)  I finally convinced her that we would go by the grocery store on our way home and buy some frozen fries.  We then discussed all the way to the store how we could prepare them so they would be soft enough for her to eat.  Then some Chinese wisdom came to me.  Steamer!  Put those bad boys in the steamer.  I use it to make pot stickers a.k.a. Chinese Dumplings.  We put them in there, added a little French fry salt and voila!  Done.  Did they look a little limp?  Yes.  Did she eat most of them? Yes.  Was I mom of the moment?  "Babam!" Yes I was.  We are getting quite creative to get her to eat something.  I will continue to post my creative Cleft surgery moments.

Father's Day!

Flo started getting cabin fever Saturday afternoon.  I decided to take her out with me to pick up Daddy's presents.  We went to a couple of stores and ended our evening at Target.  She was exhausted and so we came home and went to bed.  We all slept through breakfast.  Flo is still having a hard time at night. She has never been a great sleeper, but this has really disrupted sleep for all of us. When Mark came home from work Sunday morning he slept on the couch until we all woke up.  He opened presents and we got ready to go to Granny and Papa's house.  After a long day with cousins we came home and went to bed, but before bed Flo, AG, and Daddy enjoyed some of his presents outside.

Cleft Realities

This experience has once again reminded me that cleft has realities that are hard to deal with.  My child will never look the same. She went into surgery with one face and she now has a new face. It is still a cute face but it is not the face she had.  It is so hard to deal with the dramatic changes and I can see them even through the swelling.  I will post some photos here so everyone can see the amount of swelling she is dealing with and I will try and update these photos weekly so everyone can see the gradual changes to her face over the next 8 to 12 weeks. 

 

The first one was at the beach on Friday of last week.  The second one was Friday this week and she is smiling at me.  Same smile but very swollen.  The third one was taken Wednesday of this week. We are hoping she has peaked with swelling but it could get worse before it gets better. I will update photos throughout the weekend.

 

 

I would like to give a run down of what our girl has been through this week.  She had what is called an Alveolar cleft bone graft.  Everyone of these is different and doctors do them differently.

 

This is what our doctor does.  He takes bone marrow from the Iliac crest.  This bone is located in the hip area.  Bone marrow which means this incision is on the surface small, but it is very deep.  She has a huge bruise in this area. It started small and has grown all week long.  The bone marrow is mixed with something called BMP or Bone Morphogenetic Compound.  This cocktail is supposed to stimulate growth in the open cleft area.  Clefts come in all shapes and sizes.  Some are just effected by an open lip, some include an open palate, and some include an open gum bone or alveolar.  Flo has all three.  She had two of the three repaired until this week.  The alveolar is the hardest so far and unlike the other surgeries that show immediate results, this one requires a wait of nine months.  The doctors will base success on the amount of growth in the alveolar gap or open bone space in nine months.  We pray for lots of growth because her opening or gap is so big.  We were also told by the doctor this week that she will need her jaw repair done sooner rather than later.  He is thinking next summer.  I did not ask for any details.  One surgery at a time.

I will continue to update her recovery over the next 12 weeks. Please leave any questions you may have under the comments sections and I will answer them the best that I can.

Pink one is Sunday

The Blue shirt is Tuesday

 

Wednesday, June 19th, 2013

 

Surgery information the first week!

I know these are out of order, but I wanted to put them in the order of days and this is what I came up with.  Start at the bottom of the post to read them in order. Not perfect, but it does give some small insight into our week. Thanks for reading.

Day 5

Daddy had plans to be out for part of the day.  The girls and I decided to go to Walmart and wheel Flo around in a wheel chair. After cleaning up the kitchen, decided to work on the blog for a while and let the girls play.  We then ventured out.  It was good a first but as Flo got tired she also got a little cranky. After two hours of shopping we decided to go home.  I spent the day just looking at the swelling in her face.  It seemed less than Thursday but still really bad.  I am hoping Saturday with be a new day.  We wore Flo out at the store and she was ready for bed after dinner.  She had rice tonight and I think it was a good change for her.

 Day 4

The girls had a bit of a lazy day.  With visitors 2 days in a row Flo was really tired.  She and her sister just hung out and watched television which was fine with me.  They did play some, but mostly just a chill day.  Daddy went and got new supplies of chicken noodle for Flo and chicken fingers for us from the grocery store. I did some clothes washing and thoroughly cleaned the kitchen.  Her pain was less today and we totally missed a dose meds because of that.  The evening brought us all upstairs for some card games while the evening thunder storm blew over.  My little chicks were a little scared to be downstairs alone during the storm, so playing card games on the bed seemed like a better idea.  Flo’s speech is getting worse as her face continues to swell. She slept through the entire night. 

 

Day 3!

Flo had an easier night, but the swelling is getting worse.  Her mouth is starting to hurt now.  She is still having difficulty getting up and down, but once she is up she is full force.  She informed me today that walking on her tip toes helped a lot.  I wanted to cry.  She again kept thanking me for taking care of her and she apologized for needing so much help.  She has been doing that since Monday and it just made me almost cry each time she said it. She is a grateful child.  We spent the morning getting her to eat and taking meds, bath, etc. She got her sister to play Barbies with her and that was the entire morning for them both. Around 1 family visitors started showing up.  We had cousins and Granny show up with balloons and ice cream.  Yeah!  Everyone stayed for an hour and visited.  Flo had her cousin here to play with and she really enjoyed that.  After everyone left she was really tired.  She slept really good and only got up one time during the night.

 

Day 2

We were up most of the night.  All afternoon Flo slept, so I knew that night she would be ready to party.  We had a wonderful day nurse and then when night time came we had a God moment.  Our night nurse had a five year old China baby at home. How cool was that?  She showed us pictures of her little cutie patootie.  We were treated like the stars of the floor that night.  By five am Flo was calling the nurse when she needed pain medication or anything else.  By nine in the morning she was calling the kitchen and ordering vanilla milkshakes.  She was given crafts, movies, and an invite to see a therapy dog in the Library at 11:30am.  Mark called us at 9:30am to let us know he was coming around 12.  The doctor had come by around 7:00 am Flo was still asleep, but he let me know that if her pain was managed we could leave in the late afternoon.  She was in pain when she got up to go to the bathroom and when she got back in bed.  Her face was swollen but the doctor told me it would get much worse by Friday. He basically told us we could leave at any time. We were so tired that the thoughts of going back home were exciting to both of us, but I think she really liked having the world at her fingertips. At 11:30 we went down to check out the dogs and brought back some freebies from the library.  If you know my daughter, you know that she loves the freebies.  We got a poster, book mark and some coloring sheets.  When we got back to her room and Daddy was there.  He brought shampoo and momma was pleased. I jumped at the opportunity to shower.  While in the shower, Mark was told we could leave.  The nurse was preparing our paperwork.  I wish she had told us before I got in the shower, but no such luck.  I went ahead and bathed Flo when I got out just so the nurse could change her dressing the first time before we left.  It took another hour before we could leave, but at 2pm we were on our way home.  We were all ready to go home and the missing rush hour traffic in Atlanta was a little bonus. We got home and Flo had a little gift left at the door. We found out our friends had just dropped it off so we told them to come on back by.  They did and Flo was thrilled.  I figured she would be upset because of the swelling on her face and having   them see her, but she just wanted to see her friends.  They played for about an hour and when they left she was tired.  It was good for her because she only got up a few times during the night.

Surgery Day!

We got to the hospital at 5:55am.  Flo was chatting and not too upset.  We checked in and signed our name to everything.  Everyone was wrist banded and we were told to wait.  10 minutes later they brought us back. We found out that Flo was tall for her age.  Who knew? We headed back to our room.  Room 25 was our holding tank until surgery time.  We met lots of people- nurses, doctors, and the sweet ladies that make kids comfortable at CHOA.  We gained a bear during this time.  He had a gown, hat and socks just like Flo.  He went back for surgery too.  We were told the surgery would take 2 hours, 1 hour, 45 minutes, and our take was no one really knows. Flo had not eaten since 9:00pm the night before and neither had we.  We held her tight when they came for her and we both kissed her.  We had prayed for her earlier.  She had entertained us for an hour when they gave her the Versed, I know versed. It is a weird name for a medication.  She took the meds and within 20 minutes she was making us roll.  She Face-Timed her sister and just was entertaining everyone.  Evidently that show went on to the OR.  She evidently had the doctor and the nurses in stitches before they put her under.  She told us of this crazy dream she had about the doctor that I will share later.  We told the doctor and he found it incredibly funny.  She slept most of the afternoon.  She tried so hard to watch tv and play games, but she was really exhausted and slept until about 5:00pm. 

1 Day before Surgery!

 Sunday was spent going to Mass and washing as many clothes as possible before we headed for the hospital at 5:00am.  We rushed around and got everything done. We had Mexican for lunch once again. Flo's choice. We took AG to my mom's house and then spent the afternoon visiting some close friends so Flo could play.  It was a great day and she was really tired.  Being tired eased her anxiousness and allowed her to sleep.  Thanks, Vickie.  I, on the other hand, did not sleep well and I was up at 3:00am.  The bags were at the door and Flo's favorite pillow was ready to roll at 3:15am. I messed on the computer until Mark came down at 4:00am.  It was now time.

 

 

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8 Days until surgery!

I can't believe it is here.  We got through the Ear surgery without a hitch!  Our FLO did great up until we got home!  I knew something was wrong when we got in the car.  She rarely ever just falls asleep. Then we arrived at her restaurant choice and she could barely get out what she wanted.  She started out wanting a chicken wrap on our way to the hospital, but now that we were there she just wanted fries and tea.  Then she said just tea.  I looked at her and knew something was not right.  I recommended she get Sprite, but my husband over ruled and got her Sweet Tea! Bad Idea! She threw up in the driveway when we got home!  Then she had this big grin on her face, "That is the first time I threw up!" I looked at her and said,"you are right."  The world was now a happy place!

So now we count down the days!  We started with Laser Tag on day one of summer break!  This week we have play dates planned, a little short getaway, and a French Fry party.  She knows that French Fries are going to be a painful loss.  One of her all time favorites.  I expect to never want to eat a French Fry again after that day.  Not a huge fan myself unless I make them.  I will continue to update as we start this process and then began the healing process.