A few more days to go....

Laura still has no internet access, so I'm updating for her. We spoke last night after they had come back from the doctor's office. It sounds like all is a go for Lina and Laura to return on Saturday...WAHOO!! Lina got a well needed bath and no longer 'smells like a goat'. Laura and Lina took a walk on Monday in the city....only one block, but the fact that she took a walk is great progress.

Thanks to all for the kind words, encouragement and prayers and to our Church Family for making my part so much easier...the meals have been wonderful!

Moving Day

Good morning! I spoke to Laura yesterday and she's not able to post to the blog (some problem with an intenet filter at the hospital). Both Lina and Laura are doing great...it was great to hear both of their voices, and sounds like Lina is recovering really well. Lina and I have a joke about her going to New York 'on a ski trip' when she's headed to surgery. She let me know that she went skiing 2 times yesterday :) Hard to believe she'd have a sense of humor in the middle of all this, but she does!

They're going to be able to leave the hospital today and move to a hotel. Wahoo!!! Maybe a good night sleep is in the cards for tonight!

So many people are praying for Lina it's amazing. She is able to bounce back so quickly and both she and Laura are able to endure a really tough couple of weeks with such great spirits. Truly, this is an answered prayer! I can't wait to see what our great, mightly and loving God is going to do next!

Love

Anyone that knows me also knows that I have a hard time asking for help, I have a hard time letting people in on "my responsibilites"-I also admit that I am not a great friend. I have been humbled and made to realize what love can be. I sit here again in tears in amazement for all that the Lord has used Lina to teach me. Love is holding someones hand and expecting nothing in return. Love is not being worthy of friends that stop everything in their lives to be there for you, hold your hand, rub your back, or take a walk. Love is a friend that calls everyday, singing into the phone, or writing the lyrics to a song for all to read. Love is a friend that listens to you day or night, drinking too much coffee, and not eating enough chocolate. Love is letting people into your life, letting them see you as you truly are, and not worrying that your being judged, or that your not good enough. I know I'm not good enough, yet The most holy Lord continues to bless me with all this love.
Lina is doing great. She has been sitting up this afternoon, laughing, and she asked for a cheeseburger, but not a hospital cheeseburger--such a good sign!!! We are going to the regular floor tomorrow, and to the hotel on Sunday. Dr. Rose removed the other side of her face, and debulked the side we did in July. In stretching and debulking her "bad" eye has already opened up some. They have not taken off the bandages yet so I can't tell what the new work looks like. Thank you to all that are praying, this trip has been much easier and I feel Him with me!!
To God be the Glory!

What a Surprise

First, Lina got out of surgery at about 11:00pm. We are not in a room, but in the nurses station-talk about a sleepless night. She slept all night and through the morning, they did take her off the vent moments ago. She looks GREAT and her spirits are good. I hope she will start eating soon.
So imagine my surprise when I'm sitting next to Lina reading a book, and I look up to see Shelly and Joanne in the doorway. I can't even express the feeling that flooded me when I say them. I feel so loved, so important, so blessed... Mary I can't believe you kept this a secret. To everyone involved in making this happen, THANK YOU!!! Casting Crowns has a song, If we are the body....I am so happy to be a part of the body. Shelly and Joanne, I love you both more than words can express.

Still waiting

They are closing the gates of the waiting room and the employees are going home, still no news on Lina. The old saying no news is good news...

Surgery-waiting

We arrrived in NY early Saturday morning and it was cold. Lisa thank you for the jacket, you saved me from freezing to death. (I lost one of your gloves, I'll make it up to you, haha) We rested Saturday in the room, watched a movie. On Sunday, Bill and Susan picked us up and gave us the "A" tour of NY. We saw the Statue of Liberty, Ellis Island, Broadway, Lincoln Center, and Ground Zero. I remember watching the 2nd plane crash and feeling overwhelmed, seeing it, you realize just how devasting it really was. Monday we met with Kevin from Children's Progress. CP is helping us academically with Lina, and soon emotionally also. This software program is currently used by Shorecrest Prep to analyze their students. Lina is on track as a "public school" first grader, my goal is to have her academically equivalent to a private school first grader. Then we went to the Pediatrician to get surgical clearance, then to Applebee's for our "night before surgery treat", a hamburger and a milkshake. We got to the hospital this morning at 8:oo. We were interviewed by channel 4, channel 1, Univision, and a newspaper. Surgery got a late start 1:30, so I'll update as I get updates. She was really scared this time, but as we've grown to expect she was a trooper going into the operating room! I carried her in, laid her on the table and sang her to sleep. Peggy, we did have coffee this morning... Susan, I heard a story about a family that adopted from Kaz, and came home with 5 children, Pamela-thanks for the loving e-mail, Deb- are you out there? Renee-I'm glad I can still make you laugh! Shelly and Joanne-I feel you here with me. Mary I hope you feel better soon, I love you princess! Hannah, I am so proud of all those rebounds. John, I miss your smiling face . Rob, without you none of this would work, you are the glue! I am so blessed--Isn't it amazing to watch God ? I am thankful for all of my friends, my family, and my church. Keep praying.

Happy Thanksgiving

I am so blessed! Thank you to all our friends that continue to support our family. Lina and I are leaving for NY Saturday, Nov 24. She is schedule to meet with Kevin at Children's Progress on Mon the 26th. This company is helping us evaluate where Lina is academically. I am looking forward to meeting with them. Then to Dr. Larsen's for Linas pre-op visit. Surgery is on the 27th, it will be a long one, so please pray. As I prepare to leave for 2 weeks I find myself trying to look to the future for Lina. For those of us that see her regularly the changes are subtle....then you look at a picture of her before surgery, and I grade her math tests and the changes are HUGE. Although I have to wait, I am so excited for her future. Hannah has 5 games while I'm gone. I really don't like missing even one, so you can imagine how sad I am about missing so many. Mary cheers at 2 games while I'm gone...and I'll miss 2 of John's games. May sound trival to some, but I really don't like to miss these things!!! As you can see, Rob has a very full plate, I know he will handle everything with ease, but please keep him in your prayers!
Lina is nervous about going to NY--she has started picking her hair again, and is misbehaving..I'm trying to be patient as she has every right to be scared-Joanne I keep singing! My girlfriend Susan should be traveling to Kaz the first of the year, please keep her family in prayer. To sweet little Madison--you are an awesome friend and I know how thankful Lina is for your friendship, we will call you after surgery so you can talk to your best friend. To my best friends-thank you for keeping me going! Isaiah 40:31--But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

October 3, 2007

As I sit here sorting bills, deciding which EOB belongs with which bill, I realize-I haven't updated the blog in a long time. Our system of medicine is crazy. I am thankful for all the doctors, but do ALL of them have to send a bill, I mean ones I didn't even meet. All that aside... We went to NY on September 10th, met with the pediatrician, which we have to do on each visit. On Tuesday, Lina had surgery. I was very weird to be in NY on Sept 11th, quiet-the people all effected in some way- She did great and we were sent to the hotel by 12:30. We had an opportunity to spend more time with Bill and Susan Broderick, I really like both of them. I had a hang-up in the beginning, but realize they are here to help. Lina, Susan, and I walked 5th Avenue. Do you know that Saks has a floor dedicated to shoes, and it has its own zip code? Only in NY. In a previous visit Dr. Rose gave me a flyer that his wife found on an organization called Children with Hairloss. I sent a letter and the founder, Regina, called upon receipt. She said she would be in Orlando on Sept 18 and she would love to help Lina personally. What a neat person. She has a heart for children and is doing something about it. She cut bangs into the beauiful wig they sent Lina, but are also making a custom wig for her. It will integrate her own hair. I can't wait to see it. I really want to get the word out about this organization, so if you're reading check out the web page. I am home-schooling Lina, with the assistance of Hospital Homebound, a unique school for Lina. She is enrolled at Bauder, but will not ever set foot in the school. We have a wonderful teacher, Mrs. Ardis, that smiles all the time, and loves Lina already. Lina's spirit is good, she is not looking forward to our next visit to NY on November 27. The next surgery is a big one, so please keep praying. I am so thankful for each of you that visit the blog, take time to say hello, it will mean a lot to me now, and Lina in the future.
One last thing, a friend of mine is adopting a child from Kazakstan (sp?), please pray for her, Susan, and her family. It is an exciting time, but also stressful.
God is so good, he continues to bless our family beyond our wildest dreams.

August 29

Lina and I flew to NY today. Dr. Rose said everything looks great, however we need to do a skin graft on the portion of her head where the flap died. I learned a lot about how the flaps work, why he took skin from the places he did. I am so thankful that he is a warm doctor, willing to answer all my questions. He did some "drawing" on Lina's face to plan out a few of the surgeries to come. We will be going back to NY this week or next for the graft, probably staying for a week. Then back in October for the other side of her face, then the nose.
I have talked so little about Bill Broderick in the blog and I want everyone to know who he is... He is the Chairman of the organization helping us financially. I don't know much about him yet, but he and his wife visited us, and they are truly angels. Please pray for them. (pcirishteam.org) I have had some moments lately of feeling overwhelmed, thank you to EVERYONE that has encouraged me and for understanding that my faith will bring us through this. I truly appreciate the meals this week! Philippians 4:6-9

To NY on Wednesday

Well, the black spot is off. Having to cut off the tissue of the black spot was quite gross, but The Lord was with me. We are going to NY Wednesday morning and flying back that same night. Dr. Rose and I will discuss what to do next regarding the top of her head and the next surgery date. I started school with Lina yesterday. She seems to be enjoying it, and so am I. I taught my last class at Shapes yesterday, and I'm happy to be into a schedule. Thanks to all that have called, offered to help, and commented on the blog. Your encouragement is appreciated more than words can relate.

Every day is a gift

Lina and I are going to NY this Thursday to meet with Dr. Rose. The "scab" on her head has not completely fallen off yet, but he wants to see her. We will see what happens from there. At first I thought it a waste to go up for one day, but her head is just awful looking, so I'm glad he is going to see it first hand. I cry everytime I clean and medicate it. I'm so happy it isn't hurting her. I've spent the last hour reading over this blog and all the comments from our friends. It just brings tears to my eyes. I am so blessed! To all those that knew me before salvation, did you ever think this is what I'd be doing with my life? The last 4 years with Lina have been a challenge and I know there will be more challenges, but I am so Happy to be a part of her miracle. I have stated many times in this blog how amazing Lina is, more so though is the strength God has given to her. Tonight at dinner I said something that made Lina crack up, her little head started to bleed. After I cleaned her up, I thought about just how precious each minute of everyday is... I have spent too many moments "wondering why this, why that" I hope not to do that anymore. I write this to remind myself in future visits to NY, each day is a gift... Worshipping God is the most important thing I can do, and I want to show my love for Him by loving others
Mom and Dad thanks for supporting me...emotionally and financially. Love you both too much!!! Shelby congrats on your beautiful baby boy-Lina can't wait to hold him.

3 showers a day

Well, the top portion of the flap is looking awful! I think we will have to fly to New York sooner than October. It looks as though her skin is detaching - when they said it would crust over and fall off, I didn't expect it would look like this. Her back is healing well, so is her leg. She needs to take 3 showers a day, and then I apply ointments and bandages. She developed a low grade fever yesterday, so she is back on antibiotic. Again they say this is very normal. I don't like the way her head looks--She continues to be a trooper, full of life, joyful, and happy to be home. Please keep praying.

Home Sweet Home

Lina and I got home this afternoon. We rested at the hotel, went to the doctors and to every medical supply store! I think I could open my own pharmacy--all joking aside, Lina is doing wonderful. We may need to go back to New York in 2-3 weeks for her to receive a graft on the top portion of the flap. The bandage came off her leg and back and she got the ok to shower. I'm sooooo glad for that because she was pretty stinky. Now I apply 2 ointments to her head, clean the back and leg, put on ointment and re-bandage. Poor Hannah was in tears looking at her sisters donor sites. We will go back to do the other side in October. I'm going to do a mental shutdown tomorrow after church. The Lord has been so good to us. Thank you to our church family for bringing meals over and for your prayers. Please continue to pray.To all that visit our blog- Enjoy each day, spend time with the ones you love and tell them you love them!!!

She's sitting in a chair

may not seem like much, but I'm thrilled. Lina got the dressing on her back changed today,and the drain in her leg comes out, so they say, later today. Hopefully, we wil leave tomorrow, but I'm not holding my breath. Then we will stay at the Fitzpatrick until further notice. Lina has Nitro put on her head twice a day to hopefully open the blood flow to the portion of the flap that is discolored. She has IV antibiotics 3x's perday, IV steriod, Zantec, and two additional meds 2x's per day by mouth. She has taken everything without complaint, however, she doesn't like when the doctors come in the room. I don't really care for weekends in the hospital, but there were a few highlights, Gina-thank you for taking such great care of my girl. Helen, I love how you make me laugh!

I think she is remembering her past a little bit. She told me her curtain was on fire. She has also asked if her "Mommy" was with her. She said she didn't like her. I told her I did and that I was thankful she had her, so that she would come to us, because we love her and want the best for her. She just smiled and said she feels loved. That is a first for Lina!! I know that God has so many lessons for all that know her, additionally, I believe she is learning also. It is my prayer that Lina will understand how much she is loved!
Thank you for the comments, they brighten my day! Renee keep sending scripture! Susan you are a wonderful boost to me each day! Peggy I'm drinking some coffee right now, can't wait to do it with you at the diningroom table. Leah I love hearing your voice and the wonderful distraction of Shapes. Debbie, my ever faithful friend, thank you for calling-call Rob and get the number to my room. I love you guys! Hannah your comment was beautiful and exactly the spiritual lift my heart needed. Thank you for teaching me so much each day-I miss you. Mary, I look forward to hearing your voice everyday-it makes me smile. John, I love you! Rob, none of this would happen if not for you. You are the greatest blessing. Hugs and kisses to all!
Keep praying-we serve an awesome God, who promises never to leave me or forsake me--To him ALONE be the glory.

Sunday

Lina is still on complete bed rest. The dressings on her back and leg don't come off until tomorrow, so the likelyhood of us going to the hotel on Monday is not so great. However, her beautiful personality is coming back. She has eaten well again today, had a great bath, and is enjoying watching TV. I know that there are a lot of people praying for Lina and our family, I am sure that is the reason we are all doing well.

If all goes as planned...

we will be going to the hotel on Monday. Lina had a BIG breakfast, french toast, pancakes, sausage, and juice. She is being so brave and incredibly sweet. She hasn't had pain meds since last night. It is so much quieter on the weekends. She just woke-up...

August 2

Yesterday is almost a blur! Lina is off the vent. It was really hard to watch her go through the "process". I have come to the conclusion that I was not really prepared for this...but how would you prepare? The doctors came in this morning and took out 2 of the drains, the catheter is out, the dressings are off her face and leg. I can see how her face is changed already, but it is not easy to look at. The top of the graft is not looking great, but Dr. Rose has explained everything to me and I understand where we will go from here. All of the doctors have been so incredible. Our two nurses, Jaime (I spelled it right this time-haha) and Nicole are now friends. Nicole leaves for Florida today-have fun. And Jaime is off this weekend. The two of you have been such a blessing to Lina and to me. THANK YOU!!!!

Being adopted, I didn't get to hear Lina's heartbeat in the womb. Every hour they "doppler" her new artery, I equate the sound to the one of a baby in utero --it is again, a new bond for us.

Anyone that knows Lina is aware of her love of food--you know she's feeling better because she has had juice, eggs, jello, and peanutbutter bread this morning. She is also following directions great and listening. SHE"S BACK. I have always loved Lina, but now our relationship is forever changed, I am in awe of her strength. I love her more with each passing moment.

Please keep praying.

John 15:11-12

Holding onto scripture! They have lowered Lina's vent in hopes of taking her off of it sometime today. She is resting quietly. Still holding my hand with a grip that some wide-recievers wish they had!(haha) Peggy, Eddie, Caitlin, and Kenny thank you for the incredible surprise. I am so thankful for all the prayers and I KNOW that Christ is here with us. We were on the cover of the largest Spanish newspaper today--they used the picture of me holding my Bible-on the cover!!! Thank you all for your comments, I look forward to reading them. Our nurse Jamie had been an absolute sweethart and gives me peace about leaving for a few minutes. All the doctors have been compassionate and kind.

She is so amazing

As I type this update, the tears are just pouring from my eyes. What an amazing little girl. She did great through the night. All she wants to do is hold my hand. I was not prepared for the way she would look coming out of surgery. She has drainage tubes-two from her head and neck area, one coming from her back, and one off her leg. Theyhad to take a graft from her leg and put it on the place on her back that they harvested for her face. She had the skin on the right side of her face replaced, her right nostril worked on and the bottom left portion of her lips worked on. It is important for all of us to remember that it will take several surgeries for it all to come together. She will look a little "one-sided" for a while, but we will be back in a few months to do the other side. Dr. Rose hopes to complete Lina's surgeries in 2 years.
Ever full of love, Lina gives me sign language for I love you every 10 seconds or so. Please keep praying. To God be the Glory!!!!

Wed AM

Spoke with Laura this morning...Lina's in ICU and pretty well sedated. She's recovering as expected and is still on a ventilator (as expected). She may be taken off the ventilator later today. Laura doesn't want to leave ICU unless she has to, so she won't be able to call/e-mail, etc for now. I'll let everyone know when I get more info.

Thank you for all the encouragement and continued prayers!!
Rob

ps- Here's a link to an article from yesterday and today, if you google "Lina Demarest" you'll see a number of others:
http://www.nydailynews.com/news/2007/07/31/2007-07-31_a_new_face_for_burn_tot.html

http://www.nydailynews.com/news/2007/08/01/2007-08-01_burned_girl_ok_after_face_operation.html

Lina's out of surgery

Just got a message from Laura...

Lina's out of surgery and into ICU where she will be till at least tomorrow. Not a lot of other details yet.

The Waiting is hard

It is 5:30 and Lina is still in surgery. I last heard from the Drs. office at 4:00 and that seems like a lifetime ago. I have been interviewed by 3 TV channels, 2 newspapers, and a radio station. It is wonderful that so many people are taking an interest in Lina. Thanks to everyone that is praying, e-mailing, and checking into the blog. Hannah, Mary, John, and Rob, I miss you guys, A LOT!

Surgery Day

WOW! The future is so bright for Lina. I met Bill Broderick yesterday. He is Lina's "angel", the man helping finacially. He is like a teddy bear, I look forward to knowing him better. We also were interviewed by the New York Daily News, and this morning a local news station came to the hospital.
Lina was scared today, but they let me go into the operating room with her. I sang to her as she fell asleep, she loves when I sing Amazing Grace. Dr. Rose has HUGE plans for Lina. Today's surgery is like putting the clay on---we won't see the finished product for awhile, but I know she will have a new outlook on life in about two years.
I have often asked why the Lord chose our family to adopt Lina, I'm starting to understand....He knows best and I feel honored to be a small part of this very visable miracle.

Please keep praying.

Laura and Lina in NYC

What a big day... Today Lina and Laura left for New York City. Lina's first BIG surgery is scheduled for tomorrow and assuming all goes well today, she will have 12-14hours of surgery that will take skin and tissue from her back and replace the grafted skin and tissue on 1/2 of her face. She'll return in a couple months to do the other half... then a series of more minor (relatively speaking!) procedures over the coming years. If you haven't seen Dr. Rose's work, take a look at this, it's a burn survivor with a pretty severe injury. It shows what he was able to do:

http://www.facemakernyc.com/news/marni_castor.html

Pretty amazing stuff! It's unbelievable how many people have helped to make this a reality...some we haven't even had the pleasure of meeting yet!

Keep praying!!!

Lina's Story

In 2003 I hosted a Bible study in our home, The Excellent Wife. One of my friends in the Bible study group suggested I read a book titled The Boy Called It. I said I didn’t have time, but Vivian insisted, bringing it to me the next Thursday. I began the book, getting physically sick, as the author lived through one of the worst documented cases of child abuse. I quickly got the rest of the trilogy and read them with tears in my eyes and my children at my side. I suggested (almost demanded) to my husband that we needed to become foster parents. Rob, always calm and always compassionate said, “Let’s pray about it.” So we prayed…for 9 months.

Then my mother-in-law said that she had been approached by a man at church regarding a little girl that needed a place to stay for a year while she received surgery from Shriner’s Hospital in Tampa. As she began to speak, Rob and I both knew that we were to take care of this little girl. Rob’s mom was amazed that we were so certain about taking her however we all share faith in God and just knew he had everything under control. That evening we had a family meeting to discuss Lina. We told our biological daughters, Hannah and Mary, her story. With a tear in her eye, Hannah said, “We just have to help her Mommy!” The next day we had a picture of her e-mailed to us, so that we would all know what to expect. I was shocked! After breakfast we all prayed and held hands around the computer, I showed the girls her picture. Mary, four at the time, said, “Ya, I can play with her, “ and proceeded to gather toys and clothes for her. We began the paperwork to be a foster home through Healing the Children and Lina was given to us on January 14, 2004.

Before coming to our home, Lina stayed with a wonderful family in Indiana but this was short lived... The hospital that was to donate services for her backed out soon after Lina arrived in Indiana. When she came to us she couldn’t speak, still wore a diaper at night, and was a child with no boundaries. It took eight months to get her first surgery with Shriner’s, due to behavioral issues. Needless to say, this wasn’t going to be the one year commitment we signed up for. She has had four surgeries at Shriner’s and things probably would have continued in this direction except, her Visa was denied after our 5th extension. Our family had decided that Lina was so much a part of us that we would adopt her. Being that she had no family to speak of, we were able to proceed with adoption. Last year we went to Colombia to finalize her adoption and the Lord gave us our son John. We went with NO intentions of another child, but God had a better plan. While in Colombia I was able to meet the doctors that saved her life. Lina was burned by a candle that caught fire to netting around her crib at 7 days of age. She was so young that it was impossible to graft the skin from her own body so synthetic skin was used. Her biological mother relinquished Lina immediately after bringing her to the hospital. She was in the hospital for 7 months and then given to series of foster families in Colombia. Previous to adopting Lina we had no insurance for her. Her pediatrician saw her at no cost to us, along with our dentist (a GREAT MAN). Since we now have insurance I started doing research on the Internet for doctors specializing in reconstructive burn survivor surgery. I sent e-mails to several doctors, many stating that there really was not much more that could be done for her outside of what Shriner’s was already doing. I am so thankful for all the Shriner’s have done for us, but in order for Lina to have even a small chance at a “normal” life -- she needed something aggressive. Then I received a call from Dr. Rose. He said the first thing I need to do is meet him. He spent at least ½ hour on the phone with me that first day. I could tell he was a kind, gentle, caring man and I couldn’t wait to meet him. Rob was thinking this was an effort in futility, I told him how much I had prayed about Lina, and the right doctor, and her life and he said, “ I trust you.” So I gave Nancy my credit card number, knowing we didn’t have the $450.00 consult fee, or the plane fare. God again prevailed for Lina. We received financial assistance in both of these areas. After spending about two hours with Dr. Rose I was so excited for Lina, then it was time to sit with Linda. She said it would be a lot of money to do all that needed to be done for Lina. The tears streamed down my face. I left the office that day with a determination to pray--A LOT.

The love we have with in our family is immeasurable. We know that the Lord has a huge plan for Lina and all of us share in the hope of giving her a chance, a real chance at life.