Going back to school

Wow, it has been a LONG two weeks. Lina got on a new antibiotic after we got home, but I did not send her to school the week after surgery. The thought of her getting another bug, just did
not sit well with me! Then, all the kids were off for Thanksgiving. We had a wonderful meal with my Mom, Dad, sister Lisa and her husband Ron. Today John was baptized as he asked Jesus into his heart over a year ago, and today Lina went forward telling our pastor she wanted to be baptized. She, too, is saved and I am so excited that she made the decision to be baptized.
God has big plans for this little girl and it is wonderful to watch her follow after him.

Home sweet home

Wow, just when I think its going to be a little easier... We arrived at Dr. Rose's office at 9:00 and Lina fell apart at 9:01. For all of you that know how goofy I can be, I set a world record, dancing around his office singing and being silly, it worked though and she laughed. I helped them settle her into surgery and then waited. On Saturday, prior to surgery I filled some scripts for Lina and the insurance didn't go through. Thinking it was just the cobra nonsense I begged the for the antibiotics and such and the pharmacist gave them to me. While she was in surgery I called Anthem and they stated that the company I was Cal-cobraing through cancelled our insurance and I wasn't covered. I asked why they didn't notify me and they said they sent a letter on the 7th cancelling Lina's insurance on the 1st. I asked if she saw a problem with this...I had not received the letter, but I did receive the bill and paid it. After a few minutes of "Are you kidding me" and "this is wrong" they realized they had to cover us for the month of November--one disaster avoided! While sitting there I began to smell the most horrible smell, it was Lina's skin-I later learned that the lasering is like 3rd degree burns, it takes off the top layer of skin to reveal what we hope will be regular facial skin. I carried her out of surgery 5 hours later, she was swollen and in pain. We got to the hotel and she fell asleep momentarily, I gave her the pain med and it did not touch her pain. It was a long night. The next day we went back to Dr. Rose's office and I asked for a better pain med. For the next 2 days we didn't move from that room, hardly moving from the bed. She said her throat hurt and started coughing. Called the doc and he said she's on antibiotic, she should be fine. I will be calling our ped on Monday, as I think she might have strep, not that you could see her throat she can't open her mouth! They worked on her nose, eye, and mouth, put in a chin, revised scars, and lasered other scars. Her face has to be washed 3 times a day and a heavy ointment kept on for the week and then a cream put on for 2 weeks. She will not be at school on Monday and I'm going to evaluate each day, she probably won't go back until after Thanksgiving. Thank you for all the prayers and to my church family, you have no idea how much I love the comments. THANKS.
I have never claimed to understand why God chose me to play a part in this miracle, but I am thankful and trust in his power and knowledge.

Lina's Recovery

Lina and Laura arrived in NY on Nov 9. Her surgery was on Nov. 10th in Dr. Rose's office where she had a chin implant and laser treatment, then back to the hotel for recovery (no hospital stay this time). I spoke to Laura when they got back to the hotel and Lina sounded like she was in incredible pain. She was moaning and crying and for Lina to be complaining means she's in serious pain! She was like that all night, and the pain meds didn't do much to help her. After a visit to Dr. Rose's office the next day (and a boost in some meds!) Lina's doing a little better, but still hurting! Though it's been painful, it's 'as expected' as far as her recover and they are looking to return on Friday (the 14th)!

Please keep Lina (and Laura) in your prayers...Lina's a tough kid, she must REALLY be hurting from the laser treatment. I don't know how Laura could handle hearing Lina moaning in pain all night, knowing there's not much she can do except to let her know she's there.

All's fine at home (thank you Nancy!!!), thank you to everyone who's been praying for Lina's recovery.

November 10

Lina's next surgery is scheduled for November 10th. She will be getting a chin implant, and laser on her scars. We will be there for a week, God-willing. Lina's behavior has been less than desirable lately, maybe regression due to nervousness. I have been praying for the Lord to teach me how to be a better parent to her.

We are home!

Home at last! This was a shorter trip than usual, but it felt so long! Lina is doing great. Her nose looks better with each day. Her eye was swollen this morning, she must have rubbed it in the night. Dr. Rose is very pleased with the way everything is looking and says we are on the home stretch. We will probably go back for in office surgery in September. Mary flew in on Monday and enjoyed her stay. Bill and Susan took us around town so she was able to see the Statue of Liberty, Broadway, and had some fantastic lunches. I know I say it everytime, but I am so thankful for their friendship! Hannah and I leave early in the morning for Tennessee for AAU nationals.

no bed at the inn???

Lina got out of surgery at 4:15 and we didn't get into our room until 9:00. They had to clean the room, and then find a bed??? I still can' t figure out why they needed to locate a bed. Lina is doing great. She is drinking gatorade, and had some eggs this morning. So, maybe the Lord made us late yesterday so that-we would have the LAST room in the hospital and in the rush to find her a bed they failed to notice one of the "old" parent chairs in our room-I got to stretch out and actually got some sleep last night, I am so blessed! Mom and Dad are having a great time with the kids, and I am so thankful they are helping us.

What an incredible dope I am!!

So we got into NY yesterday, no problem, went to the pediatrician, got the ok for surgery. We got Lina her cheeseburger, and I tucked LIna into bed. I couldn't sleep, all of which is very normal. I checked the clock fell asleep around 3:00. I had set the alarm for 6:00 am and had my cell set....but I awoke to the phone at 8:30 (surgery was scheduled for 8:00) it was Nancy from Dr. Rose's office wondering where the heck I was. Lina and I were in a cab in 7 minutes flat. Dr. Rose had arranged to get a surgical suite at 10:30 and when I arrived at the hospital he gave me a hug and said, "The first thing we need to do is settle you down, stuff happens, we were worried about you, because you are so on top of things." I am so thankful he is such a kind person, he really had every right to be angry with me. I called Lea, as she always puts things in perspective for me, and she said God just didn't want us here at 8:00----I wonder when I'll forgive myself for this one...Lina was extremely upset this time. I carried her into surgery and the sleepy machine wasn't ready, so she got even more worked up, and was dry heaving...I settled her down and she went to sleep. Dr. Rose estimates surgery will take about 3-4 hours, very short in comparison, I'll post when she is out of surgery. I read Matthew 24 last night---it will be a incredible day when Jesus comes again...I know Lina will be the first to join him as she most certainly is one of his angels. I am truly in awe of her! Keep praying my friends, and please post a Hello when you read, I really enjoy the notes and need them!

Surgery planned for July 10

Lina and I leave for NY on the 9th. We have an appointment with the Pediatrician on at 5:00, then for the traditional cheeseburger and milkshake dinner. Our family has been approached by a national tv show that is premiering in September, The Doctors, to possibly do a story on us! Please pray that the Lord will use this opportunity to bring others unto Himself. I have not always understood why us, why me...however I have never doubted that this is God's will for our lives. It is my prayer that others would know Jesus because of the work he has done in our family. Thanks for continuing to pray. I have mentioned my friend Susan who is adopting... she finally got her LOI, permission to go to Kaz and meet her new family member, please keep her, Joe and Sean in your prayers. Also, a young lady from my church is having surgery on the 9th, Rachel, please remember her also. Pray is such a powerful gift--thank you for giving to me.

Saturday June 14

Well, I really stink at updating this blog. We are home and Lina is doing great. They moved the pendulum from her nose to her eye-very strange to look at- Dr. Rose fixed the area above her new nose and worked on her back. The back opened up, so she may have to have a graft in July. We are going back on July 9, surgery on the 10th. Lina truly is amazing. I think it is a blessing that she doesn't know she is different. Thank you Palmer family for the wonderful care package, it truly lifted my spirits. Thank you Mom and Dad, you truly know me--the cookies were yummy! I also apreciate you putting your life on hold to take care of the children while Rob was gone. The kids love spending time with you. To all my faithful friends, I can not do this without your continued encouragement, calls, and love. Bill and Susan, my angels--the love and admiration I have for the two of you is immeasurable. Thank you for flying Hannah out. For those they may not know, The Physically Challenged Irish and American Youth Team was in NY while Hannah, Lina and I were there. This is the charity making everything possible for Lina. Medical assistance is not the charter of the organization. They bring kids from Ireland to NY that are physically challenged, cerebral palsy, deaf, etc and they spend 2 weeks in the US. Then they send kids from the US to Ireland for 2 weeks. For some of these kids it is the only opportunity to be away from their parents, they grow physically and mentally. I was blown away. I know that I WILL be a part of the crew when my children are older. Friends, please be in thought as to a fund-raiser that we can do this year, I really want to give back to this organization and will need HELP.
I am not looking forward to going back to NY so soon, but the next surgery should create BIG changes to Lina's face. I hold firm to 1 Corinthians 15:58-Therefore, my dear brothers, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.

tuna and orange gatorade

Definitely not as invasive as the last surgery...She looks great, a little swelling, there is a bandage over the eye, so I can't tell what it looks like yet...I'm off to find her tuna and gatorade... the food here is beyond awful. Sorry for the short post

May 20, 2008

New York, New York...this really is an amazing city! Lina and I got here yesterday, checked into the Fitzpatrick (they put a twin bed in "our" room (210 from last time) and left a fruit basket, they are so nice to us) and then went to the Pediatrician. I was a little worried about the staph infection she had on her ear, however they just put a sterile bandage on the ear and surgery is a go! Dr. Rose will be taking the flap from her nose to recontruct her eye. I can't even imagine how all this works, thank goodness he is the surgeon! He also going to incise one of the scars on her back, and lipo the right side of her face. He said surgery should be about 5 hours, so we will see! Bill picked us up this morning and was amazed at how great Lina looks! My mind is all over the place today--can't seem to focus on anything!
Mary, make sure Daddy videotapes the play tonight, Lina and I can't wait to see it! Hannah, did you talk with Mr. Robinson? John, for those of you that don't know-he broke his collarbone on Friday-be careful. Rob-love you. I'll update soon....

The world doesn't revolve around Lina

I know this blog is dedicated to keeping a log of Lina and her surgeries and her progress, but as I sit here, this raining Sunday, I feel it is important to update on the rest of the family. Rob started a new job on March 12th. It is our hope that he will not have to travel so much. It was a pay decrease, but we feel the time we spend with him is of more value. He is training and has a lot to learn, but he's excited with the opportunities ahead of him. Hannah, as a freshman, is maintaining a 4.5 gpa, currently running track (and placing), and finished basketball season as an honorable mention in all-conference, and made 3rd team for PCAC. She has her sights set for a division 1 college and we couldn't be more proud. Most amazing though is her continued committment to reading the Word everynight. She loves the Lord and it shines through all she does. Mary continues to be Lina's number one cheerleader. She always places Lina above herself and teaches me each day what it means to be a doer of I Corinithians 13. Fourth grade at Wellington is a VERY challenging year, however, she has maintained straight A's all year. When the Lord chose this family to adopt it is quite obvious that he started with Hannah and Mary. They are quite frequently overlooked when attention is being handed out and their dedication to serving Christ has been a monumental reason for the success with Lina and John. John was hand chosen by God himself to complete us! His contagious laugh and smile that could melt and iceburg lift me up when I need it most. Boys are definitely more challenging than girls, at least at this age, but he is worth every moment of frustration! He is succeeding at school with marks of V in every subject. He is loved at school and made his mark as an athlete. He can do any and all sports with ease. This last surgery and even since I got home have been challenging for me. I trust the Lord and know he will not leave me, nor will he give me more than I can handle, however, my flesh, weak nature is feeling beaten and tired. It is a good thing that feeling change and my strenghth can and will be renewed. I have never used this blog as a negative sounding block, because I have great joy, but to those that might read and wonder, some days are hard, as they are in all lives.....I am blessed to have faith and encourage any and all to rely on Christ for all things.

There's no place like home...

Sorry for taking so long to blog....I don't think I'll ever get caught up at home, so I might as well keep this updated. Lina and I got home on Thursday. She is doing awesome, thanks to Dr. Rose, Bill, and the foundation. The bottom part of her little nose is so cute and the upper portion will be cute when all is done. The graft on her eye is healing slowly. Her eye has opened up so much! She is no longer wearing the sling and her back is healing. Her leg is not hurting anymore either. What a testimony this child has! Yesterday, when it was time to take a shower, she came crying to me asking for me to shower with her. I think she gets a little spoiled in NY. I told her no, she had to share me with her sister and brother, I guess attachment is no longer an issue. I spent some time talking with a friend about positive blogging...How much should I put on this blog????? I believe Lina's story to be an ispirational one, but I also want to be truthful, that said... This surgery was so hard, both physically and emotionally. Lina was so swollen and in pain, and she got mad this time. There were days that I cried wondering what I was doing, and why ! To be in the hospital surrounded by white walls and then go to the hotel, surrounded by walls that seemed to close in on us. ....Thank the Lord for Bill and Susan! The last 3 days they came and got us, took us to lunch, laughed and talked, if not for them I would be in a white jacket! haha Lina and I will return to NY for a day in about 3 weeks to see Dr. Rose and discuss her next surgery. I believe the next surgery will be shortly thereafter. Dr. Rose continues to amaze me with the plans he has for Lina. Lina wrote in her journal yesterday, "My face is beautiful because Dr. Rose is so cool. He is so smart." How incredible is it that she continues to look at the positive with all she has been through. Today I spoke with Regina from Children With Hairloss, the organization giving Lina hair each year. What an wonderful woman. Her wish is to provide to each child in need, but of course that takes money. To all reading, please pray for funding. Also, Mike at Next Generation in Tampa , is the man responsible for maintaining Lina's wig,and June, who cut it to fit Lina's face, I am so thankful for them, for their love and support of Lina and our family. Isn't it amazing that there is so much good going on yet we so often don't hear about it.
Thank you to my friends for your prayers, love, and conversation. Thank you to my church family for loving us! The Lord is teaching me so many lessons, each day. I am so blessed. He continues to work on me, even though I mess up on a regular basis.

Keep Lina In your Prayers

Just got off the phone with Laura. She and Lina are doing well, however the graft around her eye is not looking great. Please keep praying that God will make this graft take and heal Lina. He and only He can do it! We continue to expect miracles and ask you to keep Lina in your prayers.

Laura sent a photo of Lina and it was kind of shocking. Dr. Rose was very happy with the way Lina looks....I'm glad he said that, becuase it doesn't look right. We have every confidence in Dr. Rose, but just want everyone to know that this is far from the finished product.

Lina and Laura are rebooked on a flight for next Thursday (March 13th). We miss them both so much and can't wait for their return home...

Out of the Hospital...

Lina was released from the hospital over the weekend. She and Laura have been out for a few days now and Laura doesn't have internet access at the hotel, so I'm posting for her.

Lina's doing well. She's eating, she's joking around and all around sounds like she's "Lina" again. They went to see Dr. Rose yesterday and he gave them some news none of us wanted to hear. They need to stay an extra week to take care of a graft that needs some attention. Rather than come back on Friday, they'll need to stay till March 13th. Ouch!

Laura got a look under the bandages yesterday and wanted everyone to know that it's far from done at this point. Dr. Rose is still 'molding the clay' and it looks akward right now.

Sorry for the short post, but have to run kids to school. Keep the prayers coming! Thanks,
Rob

Progress

She had a little sponge bath and sat in a chair for about 45 minutes and it did a world of good. We will take down the oxygen to 31 % and see how she does. They had to take blood to run tests and they had to take it from her little foot. It was the only place she had a good vein. Her BP is down, praise the Lord. She is still so sleepy, which is crazy because she hasn't had any morphine since 4 am.

Coffee, I need coffee!!

Lina's saturation level dropped to 91 several times last night, as we sleep our body gets lazy. For most, we just keep breathing, but since she is so swollen she doesn't take deep enough breaths. Also, her blood pressure has been very high, and right now we don't really know why. We are going to give Tylenol with codeine and see if she will wake up! She has reached the peak of the swelling so as it goes down her vitals should stabilize. She is not herself. She has only asked to hold my hand a few times, and she hasn't really said anything for 2 days. On the way to the airport Monday morning she was a chatty Cathy and I asked her slow down, now I just want to hear her little voice say I love you!!!!! They say it is really cold outside, I don't want to leave until she wakes up, I don't want her to be alone. As I sit here taking inventory on life (not much else to do) so many things come to mind...I wish the road to becoming more like Jesus wasn't so long, but I guess it has to be so that we realize just how much we need him. I can't imagine how some of the people here get through these times. I know the Lord is with me, that is the only way I hold it together. Even when I doubt him, he never leaves, he never forgets, and he always loves. To my faithful friends, thank you, thank you, thank you. I love knowing that you are praying for Lina and I. To anyone reading---go hug your children, hold them tight and tell them you love them and you are proud of them. If they are grown, call them right now--tell them of story of when they were younger, and that you are proud of them, even if they messed up!!! I don't think we can tell a person, I love and appreciate you too much.

Oh my goodness!

Lina was in surgery for 9-10 hours. She came out extubated and the recovery room sent us to a regular floor. Not really the best plan. As we were getting ready to move her she began to vomit. We then went to the regular floor where the very sweet nurse said, "What? She needs to be monitored." So we met with the doctors from PICU and they agreed, as they were processing her move Laurie decided to put her on a monitor, not something they typically do on the regular floor, to find that her saturation was down to 92%. We put her back on oxygen and she was fine. Time to move to PICU, again she vomited. We got settled in ICU at about midnight, she had oxygen all night and we are beginning to take her off of it slowly. She is definitely in much more pain this time. I think this has been the Biggest, hopefully the last of the "BIG" surgeries. She is extremely swollen, her arm is ace bandaged to her body, she will leave with a sling, as she is not suppose to move her arm too much for 3 weeks (that should be fun-haha). She is sleeping now. As I look at her I just want to cry, I'm not as that won't do her any good, but she looks like someone beat the life out of her! Her right eye is swollen shut, she has bandages everywhere, only one drain this time, she has breathing tubes coming out of her new nose. She had two nostrils now. I want everyone to be prepared --- her nose looks funny right now. Dr. Rose used the forehead and turned the skin down so there is a turn in the skin at the bridge of her nose. She is a work in process! On our next trip they will nip and tuck and I'm sure it will be beautiful. Dr. Rose was extremely pleased with the outcome of this surgery. I have one of my most favorite nursed today, Gina. She has been growing her hair out for Lina and will cut and donate to Children with Hairloss very soon. Some of our friends from past visits have come by to say hello, Nicole, Jaimie, and Helen. I appreciate them so much. The small gesture of stopping by means more to me than they can imagine.
Please keep praying, there have been some changes to the sleeping arrangements for parents in the ICU. The chairs don't stay in a reclined position. No problem for a few days, but for all the parents here for months at a time----I pray a special blessing for them and their backs.
Thank you for calling, and blogging-I need the encouragement.

February 25,2008

A lot has happened since my last post. I am just not so great at sitting down at the computer these days.haha Susan you continue to be my inspiration. First, a few weeks ago we had Lina's IQ retested because of her hospital home bound status--her IQ is up by 20points, previously she was "mentally handicapped" now she is "normal". We had some additional test down which indicate that she has the capacity to raise her IQ even more as she understands more than she can communicate. Given her circumstances I think that is normal. She is working hard with me each day at her "home school". Hats off to all the moms that home school year after year, it is not easy. (yes that was to you Lea!) I really hope she is able to go back to school next year. I believe being home with one-on-one teaching has been of great benefit to her. Peggy, we are having coffee right now, how is yours?

We flew out of Tampa yesterday and had a great flight in. We circled NY for about 20 minutes, but the snow on the ground looked beautiful from the plane. We walked around Grand Central Station, what a beautiful place. The moldings are breathtaking and the ceiling is the stars mapped out. We went to the pediatrician, Dr. Larsen. I don't think I've mentioned her before, but a lovely doctor that always takes great care of Lina. She even visits us in the hospital without billing!! Then, the customary night before surgery....Hamburger. She was feeling uneasy last night, we cuddled in bed watching America's Family Videos and she fell asleep. She understands was surgery means now, I'm sad that she is scared, but also pleased that she is developing mentally, and paying attention to things she used to ignore. Bill brought us to the hospital and she started losing it. I told her stories, and talking about all the fun things we have done and she soon started being a chatty Cathy again. In the surgical waiting room we met Dr. Rose, at first she wouldn't even look at him, but shortly thereafter she gave him a little hug. I walked her into surgery and sang to her and told her I love her and she signed I love you to me. I think she will be in surgery for about 8 hours--today is a big day for change. He is rebuilding her nose, taking a flap from her forehead. He is also going to take away all the scar tissue on her "bad" eye and build it up with cartilage. He is also going to do some revision of the back where he took the first flap. He will also inject cortisone in the scars on her leg. After hearing all of this her only question was, "Can I have dinner?" I'd be asking, " Can I have some drugs?" To say she is amazing would be an understatement. I wish I could put into words the feelings I have for Lina. There are SO many emotions tied to her. The most important though is the love. John 15:12!!! Thanks Pamela for the constant reminder. We are so blessed!!! First, the Lord brought us to Lina, who would have thought this was the plan. Next, he led us to Dr. Rose. Then, to Bill and the foundation. His way truly is the best!!! Shelly and Joanne, thank you for your prayers, and I wish you were here too! Rob, don't worry about me!!!! You are so incredible and I love you and thank God everyday for you. Hannah, today is your first track meet. I wish I could be there to see you run and jump. Call me the second you get home to tell me all about it. Mary when are the auditions you spoke of? Keep practicing! I know you REALLY didn't want me to go this time, the Lord will bless you richly for your generous, loving, and precious heart. John I can see your sweet smile. Remember to exercise great self-discipline, and eat your veggies! I love you sweet boy. Thanks to everyone for the prayers. I have peace right now and feel his hand in all of this.