Letting go and saying goodbye...

It is really hard to let go of the people we love and say goodbye. Papa Jim lived a long and loving life and he passed away last night. We know that he is no longer suffering and is at peace in heaven. It is still hard to let go.

Lily, Graeme and I arrived in Louisiana about 7:30 p.m. last night. We went straight to the hospital and my friend Angela met us there. She entertained and fed Lily and Graeme while I went to see Papa Jim. My sister said it best when she told me that I was trully blessed with wonderful friends and I am. God placed Angela right where I needed her last night and I am forever grateful!

I saw Jim and he was fighting so hard to breathe. His whole family was there and everyone knew that he was letting go. There was so much love in that room for this wonderful man. All of his children, many of his grandchildren, my mother and all of her children were with him. I would love to say that his transition was peaceful but this strong man fought until the end. Bless him! I know that he is at peace now and that is a blessing.

As I was updated while driving, I shared with Lily as best I could what was happening. We talked about how Papa Jim had lived a long life and that God and Jesus may need him in heaven soon. (How do you explain something you hardly comprehend to a child) We talked about how we would not get to see Papa Jim and that would make us and lots of other people sad. We also talked about how Papa Jim would live on in the hearts of those who loved him.

Last night, I told Lily that Papa was now in heaven and we talked more about how he lived in her heart. We talked about how he would be there in spirit for so many things that she would do that he would have missed because we lived so far away. One of the biggest events that we talked about was when she dances in the Nutcracker. I told her that he will be able to see her from heaven. She then exclaimed, "Oh Mama...Papa Jim will get to dance in the Nutcracker too since he is in my heart!" Then she giggled the sweetest most contagious giggle and I got tickled too. Then she said, "Mama, I feel so much love in my heart." I should have known she would lead me. Thank you God for all the love that fills our hearts and for having Papa Jim touch and bless our lives so completely.

Leaving for Louisiana

Graeme and I traveled to Louisville with my friend Becky to see the surgeon for Graeme's follow up. He is doing really well and the surgeon is pleased with the way he is healing. He plans to watch the fistulas and we will see him in 6 months. If they do not close, Graeme will have an outpatient surgery to repair them. We go back in May to see how things are going. I asked Dr. Chariker if we needed to do anything in the meantime and he advised me to "Stop looking in Graeme's mouth.".....easier said than done! We also talked about future surgeries and needs. It is all a little overwhleming but we will take it one step at a time. For now, he is on a soft diet for a few more weeks and will still sleep in his No-Nos to prevent him from stuffing his shirt in his mouth. Graeme was his typical charming self. He did great in the car for the 4 hours there and the 4 hours back. We are hoping he will do well for 12 hours tomorrow.

Tomorrow morning, Lily, Graeme and I are heading to Louisiana to see Papa Jim. He is still in the hosptial and having lots of difficulty. He has pulminary fibrosis which makes it really difficult to breathe. He requires high levels of oxygen around the clock and really struggles to breathe with the least exertion. I just feel the need to be home to support my Mom and to see Jim who we love so much. Thanks to everyone for all your prayers and support. We are so blessed to have so many friends including my blogging friends! Thank you all!

Praying for Papa Jim

Papa Jim seeing Graeme for the first time at the airport.

Papa Jim and Lily playing dress up.

Papa Jim is really sick tonight and we are all praying for him. He has just been taken to the hospital and I am waiting to hear how he is doing. He loves my children as if they were his own grandchildren and the feeling is more than mutual. It is a long strange story but I have known Jim since I was a little girl. He and his wife, Barbara were good friends with my parents. Both my father and Mrs. Barbara passed away from cancer in the same year. Jim and my mother supported each other for a long time as friends and then began dating. He has been a constant and loving part of our lives from that moment forward. He was at the airport when Lily came home and welcomed her with the same enthusiasm as he did Graeme this year. We are all so blessed to have him in our lives. We all love him dearly.

He was diagnosed with a rare lung disease earlier this year. The disease has begun to progress rather rapidly in the last few weeks. He has gradually become more dependent on oxygen and really had a rough week when my mother was here helping me with Graeme. It was hard because she really wanted to be here with us and be home for him as well. This week has been a little harder each day and culminated with his trip to the hospital tonight.

That little whole in Graeme's palate just doesn't seem as significant tonight. I am struggling with being so far away and feeling as if I need to be there to help. There is one thing I can do and that is pray. Please pray for Jim, my Mom, his children/grandchildren and all of us who love this wonderful man. I am praying for healing, peace and faith!

Bad News, Better News

I have probably spent an hour searching for a graphic to describe how I feel tonight and just can't find one. Nothing seems right. I am upset and optimistic at the same time. I have cried and laughed with friends throughout the day. I am frustrated and hopeful. As you can tell, my emotions are all over the place and have been all day. This morning after I fed Graeme and gave him his antibiotic, I peeked in his mouth as I have obsessively done each day since his surgery which was 9 days ago. I saw a black hole. A small black hole but it was a hole in the middle of his suture line. I flipped and felt like crumbling. Graeme was blissfully unaware that his mother was freaking out and was his happy and charming self. I called the physician immediately. Have I stated how much I love our plastic surgeon, Dr. Mark Chariker....well I do. He is not the funniest or warmest of doctors. He is direct and no nonsense and exactly who you want with your child due to his experience. Anyway, he is so busy that it is often difficult to get his staff on the phone. I called and spoke to the receptionist who instantly put his nurse on the phone. I explained the situation to her and she said that we should bring him in to see the doctor. I reminder her that we lived 4 hours away and asked how late I could get there. She then asked more questions....was I sure there was a hole (um....yes, I'm a pediatric speech therapist and I see air bubbles), where the hole was located (right in the middle of his palate), was he bleeding (NO...thank goodness) and then stated she would call me right back. I told Wes, called my best friend Becky who was willing to drop all plans and head out of town with me (I love you Becky!!! thanks for being so wonderful!!!) and jumped in the shower while mentally trying to think of everything I would need to pack so we could leave within an hour. Within 10 minutes, Dr. Chariker called me back. He asked a few more questions and he figured out that the hole was where the soft palate meets the hard palate. This is the most common place for a (can I even type the darn word) fistula to form. He told me that it occurs in approximately 3% of the patients and that there is no need to rush in today. He will see us next week and probably monitor the situation. Graeme's palate was very wide and he was not surprised that this complication occured. He hopes that it will close on it's own but if not (GULP), Graeme will have surgery again in about 6 months. I really don't know what to say after that except that we are hoping and praying for the best. Graeme has done so well and has kept his No-Nos on without fussing. He is just remarkable. Due to the way that his lip was repaired in China, we knew that a fistula in his gum line was possible. Dr. Chariker had repaired this specific place and warned us that he was not sure if it would hold for lack of a better term. Yesterday, the fistula in the gumline opened up. I was disappointed but not upset as I knew this was a possibility. Then, I found the second fistula today and that upset me. I just want it all to be easy for him. I don't want him to have any more surgeries than he needs to and I want to protect him and make it all better. So our bad news....not one but two fistulas, better news....they can possibly heal themselves. Praying for healing and enjoying each funny moment with our little Graeme!

Progress

Graeme is making lots of progress. He is definitely feeling better and even got in trouble today for trying to take off his No- Nos and stuff his shirt in his mouth. It is amazing to me how quickly he is healing. I hope this continues! I will just let the pictures speak for themselves!

Graeme last Wednesday. He is napping at Becky's condo on our way home.

We are back in the car for our final stretch home!

This was taken on Thursday. He is still medicated but loved playing with his tent. Thanks Mel and Brian!!!

Lily showing off her outfit from Lily D. and boots from Mary Grace. Quite the combination (the boots are still too big but she insisted on wearing them...all in the name of fashion!)

I think these were taken on Friday. He is off of his strong medicine and just taking Tylenol now.

Does this look like the face of someone who just had surgery? (And I was worried about losing his smile!)

Lily, Granny and Graeme

I don't know what I would have done without my mother here. It has been wonderful to have her here and it is going to be so hard to let her go home tomorrow.

Saturday morning, a PJ morning!

Lily has been very helpful with Graeme!

Lily showed another one of her favorite outfits to Granny!

Graeme and Lily at Pine Mountain State Park Resort

I think I have the cutest kids in the world.

Margaret, Lily and Graeme

On Granny's last day we headed to the resort at Pine Mountain. Granny was craving Blackberry Cobbler (she has been talking about it ever since she landed). She was not disappointed. It was a beautiful drive with the leaves changing!

We are so blessed and hope that Graeme continues to heal well. Then, time to work on his speech!

Healing

This is a quick update to let everyone know that Graeme is doing suprisingly well. He continued eating well and we were discharged from the hospital at 10:30 a.m. on Wednesday. I was shocked to say the least but that morning, he really was acting more like Graeme. We drove to Lexington and napped at my friend's condo. He was doing so well that we decided to come on home. We traveled the rest of the way home and there was only one time that he was really fussy. He needed another dose of pain medicine. He was so happy to be home as we all were. He has rested so much better just being here. All of the things that I worried about have been fine. He is eating well....I didn't really think this would be an issue. He wears his no-nos without fussing. I let Lily try one on and she lasted maybe three minutes. He is sleeping well....AMAZING! (He usually sleeps with half of his shirt shoved in his mouth but is now sleeping without this comfort and in no-nos)....this is a true answer to prayer! He is such a good sleeper and I really worried about this affecting his sleep but it has not. Now my sleep, I am up checking on him constantly so hopefully that will decrease soon! We are fading the strong pain medicine today and going to Tylenol. He really seems to be healing well considering all that they did to the little guy. I'll post pics later when I have a bit more time.

Surviving Surgery

I have been trying to finish for the last 5 hours. Graeme is currently resting peacefully but there is no telling how long that will last. Our day has been very busy! The big news is that Graeme has had his palatalplasty. I did inform the doctor and nurses about his possible Hand, Foot and Mouth Virus but it was so mild that they did not think it would affect him.

All morning he was his typical funny self. He charmed all of the nurses and had the nurse anesthetist wrapped around his finger. Our nurse anesthetist spent a lot of time with Graeme prior to surgery and she knew first hand what he was going through as she had a repaired cleft lip and palate. She even hung out with us in the play room while we waited for the doctor....

Graeme loved the play room and this helped distract him from the reality of the situation.

I think he thought that since we weren't going to feed him, he would just have to cook his own breakfast!

(I did wake him up at 4 a.m. to eat. He was not happy that I woke him up until he saw the food. He ate oatmeal and yogurt and gradually went back to sleep. At least one of us went back to sleep)

Breakfast is ready and it is hot!

If I close my eyes and really dream maybe it will become real!

Shortly after, Dr. Chariker arrived. They gave him his happy juice. He immediately went with our favorite nurse anesthetist and the rest of the surgical team. Mom and I headed to grab a quick bite. the actual surgery took about 1 1/2 hours. He was away from us for just over 3 hours. When they brought him to us, well he was pitiful!

He really settled down after they handed him to me.

He is wearing "No-Nos" on his arms to keep him from touching his mouth and hurting himself.

How many wires can they fit in one teeny tiny hand?

Watching TV while heavily medicated!

Resting peacefully again!

He has a cycle that he has been going through this evening of waking up, fussing, snuggling, getting some medicine, drinking, eating and going to sleep again. Yes you did read that right, he is eating just as I predicted. Nothing keeps Graeme from eating his precious food. He has eaten 2/3 of a cup of yogurt and some soup this evening. He is eating slowly but eating anyway. I am hoping that he gets some rest tonight.

As I sit here with him, I think about his first surgery in China. Mom and I were chatting and wondering what it was like for him. I assume that a Nanny from the orphanage went with him but I have no way of knowing for sure. I just hate to think of him in the hospital without family.

We are so blessed to be here with him now. Baba and Lily, we love you and miss you and can't wait to see you in a few days. Graeme really loved talking to you on the phone tonight.

Thanks to all for your thoughts, prayers and blessings. They have really seen us through this day. For all who are wondering, I stopped spinning the moment they placed him back in my arms after the surgery. I know that we have a long road to recovery but he was back with me and all was well in the world!

Also, Graeme has allowed me to hold him and snuggle with him more than he has ever done so since coming home from China. It has been a blessing to be here and to share the LOVE we all have for him.

I'm SPINNING!!!

Spinning - As defined by Wes, "A condition when Margaret has too many things on her mind and spins out of control if only in her own head while thinking of all the things she needs to do but will never get to do due to time constraints."

Tonight as my family sleeps and I should be sleeping, I am spinning. I am an admitted and hopeless Spinner when I get overwhelmed which is about now. We all had a great day for Graeme's birthday and now my thoughts are flying to all that we have to do in the next week. I have focused so much on what needs to be done at school while I am out and with my private practice kiddos that I have not done all I need to do to prepare for Graeme's surgery.

It is not as if we live in a city where we wake up the morning of surgery and drive to the hospital. Graeme is having surgery 4 hours from home. Due to the logistics and Wes being in nursing school, he is not able to travel with me. My Mom has flown in from Louisiana to help me while Wes stays home with Lily.

We will stay at a friends condo in Lexington tomorrow night (well now tonight...it seems that I have spun my way right into tomorrow). Then, we head to Louisville on Tuesday morning. It is all of the last minute things that we need to do. Like well ummmm, pack. See I was busy making today unforgettable for him and so I have not yet packed. We did get laundry done so the clothes are clean but the packing is not yet done. I don't want to forget anything we may need since we will be so far from home. But since I have never stayed overnight in a hospital with a small child, I am not quite sure all I will have to bring. The last time I stayed overnight in a hospital was with my Dad and well, I just can't open up to those emotions tonight. I am sure he will be checking in on us from heaven and I sure hope I feel his presence. Anyway....so I have been reading and following and listing suggestions but just have not had time to process what all I need to take. So since I too am a master of procrastination, I will throw it all together tomorrow.

I have also been trying to get Lily taken care of and making sure we had all of her outfits laid out for school and her dance bag ready for Nutcracker practice and a little one on one time on a day that has been devoted to her new brother. I struggle when I am away from Lily. I have lots of friends (angels really) waiting in the wings (with wings) to support Wes and Lily while I am away and that brings some peace tonight.

I also have two new patients that I am seeing through our birth to three program. I have meetings and therapy tomorrow with them before I can come home to pack and leave. They are twins who started life way to early and came home to a family member with anger issues who shook them very early in life. The result is two of the most amazing little survivors I have ever met. Sometimes I think I learn more through the children I work with than they will ever learn from me.

The thing I really can't even begin to think about is the actual surgery. As a pediatric speech therapist, I am more than anxious for him to get the palatal repair. As his mother, I see all that he is trying to say and would do just about anything so that others could understand his speech too. Also, there are times like yesterday when we are driving in the car and he is chattering away and I know that it is meaningful in his own head but I just don't understand him. Those moments make me want to cry. I recently screened the speech of a bunch of three year olds for our county and it hit me full force what all he should be saying. I know that he just came home from China a few months ago but he really is brilliant and is understanding so much and trying to communicate so many ideas and discoveries. The surgery worried me especially since the surgeon stated that he is not sure if Graeme has enough tissue to close the palate completely. Enough of these thoughts, I can't even go there tonight.

To make matters even more interesting, the Hand, Foot, Mouth virus is going around our area and Graeme may have a mild case. From what I have read, he was exposed anywhere from 3-5 days before symptoms and will carry the virus for up to a week after symptoms are gone. So the first question is would you call the doctor....if I do so, I am sure the surgery will be cancelled. Or would you go, let them see him and make a decision (I am leaning toward this).... Did I mention that my Mom flew in from Louisiana to help, it took 2 1/2 months to get a substitute therapist hired to cover my children at school while I am gone and we have had the surgery scheduled for 3 months? So we may or may not be having surgery on Tuesday! Either way, I think we could all use some positive thoughts and prayers right now. If surgery is postponed, please pray it does not take 3 more months to get it scheduled again....I don't want to wait that long to hear what my son has to say!

Happy Birthday Graeme!!!!

This evening we celebrated Graeme's first birthday home. It is actually tomorrow on October 13 but we celebrated this evening since we are leaving tomorrow. We are spending tomorrow night in Lexington and will then go to Louisville for his palate surgery on Tuesday. Today was all about the CELEBRATION!!! He was amazed over everything from the balloons, to the cake, the friends/family, the presents. Each thing made him squeal with delight. What a wonderful day!!!

I loved his cake...CARS!!

Lily is sporting her Lightnin' McQueen tatoo.

This look was on his face for most of the day!

Lily helps Graeme blow his candles.

Some new dress up clothes...isn't he a cute pirate!

Graeme with his doctor kit from Aunt Jodi and Uncle Rodney. I figure this will be a hot item to play with after the surgery!!

G & L with Uncle Gary, Matt, Tonya and Aunt Verna. We so enjoy when we all get together!

Becky and Mark David with the kids! We are so blessed with wonderful friends!

Graeme and Mama...have I said lately how much I love him!

Graeme and Granny! She flew in yesterday to help me at the hospital with Graeme! Wes will stay home with Lily and keep up with his course work in the nursing program.

We need prayers that all will go well as we travel tomorrow and bring Graeme for the surgery on Tuesday. I'll try to update from the road!

Beauty and the Beast

This weekend we went to see Beauty and the Beast at the Barter Theatre in Abingdon, Virginia. It was a wonderful!!! The production was trully amazing. Graeme literally crawled up my body as soon as the Beast appeared on stage. He watched the entire play. We never really know what he is thinking. We arrived home really late on Saturday night. Sunday morning Graeme awoke as the Beast...crawling on all fours through the house, growling and oh yes, eating as the beast at breakfast! I was amazed at how much of the play he acted out for Wes! We had to request that the Beast stay home when we went to church.

We went with a large group of friends!
Moms and kids for a wonderful play.

Aren't they all so cute!!

Graeme was a little freaked by the Beast but he recovered rather quickly!

Lily loved running!

His adventurous spirit.

Now for the Lily story of the weekend. All day Sunday, we had her baby with us who had been renamed that morning to guess what....you got it, Belle. So Belle went to church with us, napped when Lily napped and almost went to the movie but Lily thought she might get to scared. We had to read to Belle and tuck her in and at one point, she had a fever and needed medicine. When it came time for bed, my Lily (aka the master of procrastination at bedtime) was taking her slow, sweet time to get dressed for bed. I had the bright idea and said, "Lily, I hear Belle crying. She wants her Mama to come and sleep with her. She really needs you to hurry." Lily responded with a very exasperated tone, "Mom, you know she is just a toy!"

Our celebration with Lily

Life has been a bit busy so I am behind on posting. These are the pictures from our celebration last weekend with Lily. We had a wonderful time !

Lily Wen and Graeme after church

Baba, Lily Wen and Graeme

Lily Wen opens her gift from China....her Jade Chinese zodiac figurine

Me and my girl

My daughter in her beautiful Chinese outfit!

We had a wonderful time at our favorite Chinese restaurant. I still can't believe how much she has grown!!!

I'll try to catch up on all of our other news this week!