Loss

Early this morning at around 2:30 am I lost one of the greatest men I have or will ever know. My Dad passed away early today. He was my father, mentor, friend, confidante and my rock. I can't think of anything more profound to say right now. My heart is broken in two.

Friday September 5,2014

I am still in Thunder Bay. My Mom and Dad celebrated their 48 wedding anniversary two days ago on the 2nd. My Mom had a feeling that my Dad would pass on their anniversary. She was wrong. He is still hanging on.

He is sleeping most of the time and is medicated. He is in a lot of pain. Even his skin hurts when you touch it. My sister, mom and I are averaging about 4 hours of sleep each night. It is starting to catch up with us. We are exhausted yet not hungry thanks to all the food that people keep dropping off.

We have a excellent crew of people that come in to help us. My Dad has an RN who visits the house twice a day and a home care worker who is also here twice a day. Their help is much appreciated. There are also a lot of people who work behind the scenes to ensure that we have all that we need.

Jim and the girls are doing OK. We have some very good friends who are helping out with picking up the kids, feeding everyone and helping Jim to look after all the little details. I missed Ainsley's first day of school. That made me very sad.

I know what I am doing here is very important. My Mom could not do all of this at home without my sister and myself. My Dad would have to go to Hospice Care.

Please pray for strength for me and my family........and sleep.......need sleep!!!!

Not much new

I made it home to Thunder Bay OK. You know you have travelled the same stretch of highway too much lately when you start to recognize the highway workers who hold the stop/slow signs at each construction job!

My Dad is slowly getting worse. Not much new to report. He is tired, confused at times and has basically slept all day. He is no longer able to to eat or drink anything. This is hard :(

Sofie and the rest of my family

Update on Sofie first.
Her hearing has improved. Her left ear is back to her previous level of hearing loss and her right ear, the mid range is back to her prior level, the upper and lower levels are slightly better that her worse test and worse than her previous normal level of hearing loss. Make sense??? We do know that this will be her last set of ear tubes and that when her ear wax builds up, it really affects her hearing and needs to be dealt with ASAP! We have no idea why or how or what! It is what it is. It is Sofie :)

Family notes.

My Dad has been battling some type of cancer since Ainsley was minus one month of age. When I was eight months pregnant with Ainsley, my Dad was diagnosed with colon cancer. He beat it. Later on, he was diagnosed with Prostate Cancer. No biggy, we figured it was caught early. Turns out it was the more aggressive type. He continued to battle on and never complained or whined.

This summer was tough. He is losing his battle. I just got back with the girls from Thunder Bay tonight.  Tomorrow I head back to Thunder Bay by myself. After I left today, my Dad's lab work came back and it had changed a lot. His hemoglobin is no better despite many transfusions and his platelets are super low. His oncologist gave him 2-3 days.

I will try to keep everyone updated on my blog. My Mom and Dad are very private and are not comfortable with their battle being posted on Facebook. I request that any comments that you wish to make are made on my blog and not on Facebook. I hope to respect my parents privacy and still be able to update our friends and family.

Thank you so much

All of us :)

PS if anyone feels the need to help out Jim, please just step in and volunteer. The beginning of the school year is not a great time for Mama to be MIA :)

Updates

It has been a while hasn't it. I keep meaning to update everyone and then something else comes up and I forget and then I am too tired to think about what to write so I go on Facebook :)

Lots has been going on. I will update about Sofie first. Today she had a minor surgery done. She had her ear tubes replaced as they had worked they way half out of the canal. The other reason that new tubes were put in is that her hearing has gotten worse symmetrically across a wide range of frequencies. The hope was that new tubes would help remove any fluid or inflammation that could be a cause of her hearing loss. No such luck. No fluid, no infection and no inflammation at all. In fact, if it weren't for her abnormal hearing test he wouldn't have even bothered to put them back in at all. Sofie is an enigma. She has stumped her ENT surgeon.

The next step is to repeat her hearing tests, make new ear molds and make any adjustments and then go from there. If her hearing returns to it's previous state, we scratch our heads and keep moving in the same direction. If the tests show the same abnormal changes then we take a breath and depart down an unknown road. There is no way to know if her hearing will continue to deteriorate or it will stay at this level. One day at a time.

....and everyone breath in and breath out :)

Sofie's language has just exploded over that last year. There are even days when I have to stop and stare at her in amazement over the stuff and the words that come out of her mouth. It is truly phenomenal. Don't get me wrong though, this little girl is stubborn, strong willed and fierce. She takes life on head first and doesn't stop. I love her, she is exhausting. She needs to be fierce.

So I might try to change things up a bit on the blog. Make it more about our life and living in general and less about just our adoption of Sofie. If I ever get the chance.

I have also started a photography journey. I have been taking classes on photography and photo editing and I am thoroughly enjoying it. I hope to one day be able to actually get paid to take photos of people and places and things. If you never take the leap and try, you will never get there.

Here are a few photos that I have taken. Take care and we will talk again soon :)

2 years

It has been two years since we first laid eyes on a scared little girl in China. So much has happened in those two years. Our family has changed and grown as we struggled to find a new normal. Ainsley has learned how to be a big sister and she is doing a marvelous job with it. Jim and I have learned new parenting and family skills to help nurture our family and get through the difficult times.

Sofie! Sofie has done amazing. In two short years she has undergone a lip revision, palate repair, hernia repair, ear tubes, two teeth pulled and 4 filings under anesthesia, CT Scan, ABR exam under sedation, tonsils removed and a palatopharyngoplasty of her palate to help correct her speech not to mention countless hearing exams, ear mold fittings and speech therapy sessions. She is one tough little cookie.

I could go on and on about the last two years. There has been joy, heartache, stress and happiness. It has been a privilege to watch Ainsley and Sofie become sisters. Sisterhood truly has nothing to do with genetics. It transcends everything. It is a beautiful thing to watch grow and develop.

恭禧發財 Gong Xi Fa Cai

Happy Chinese New Year!!!!!!  "Wishing you to be prosperous in the new year." 

2014 is the year of the horse in the Chinese zodiac calendar. The horse symbolizes kindness, strength and gregariousness. In the large Chinese astrological calendar, this year is also associated with wood making this the year of the wooden horse. This represents 12 months of patience and cooperation. I need some of that :)

Lunar New Year is a very important holiday in the Chinese culture. It is a time to honor ones ancestors and to spend time with family and loved ones. More than any other holiday, I think of Sofie's China Mom, her birth Mom, during this wonderful time of celebration. I hope the holiday is not to hard for her wondering where and how her daughter is. I hope that somewhere in her heart she feels that Sofie, Lu Jing Jing and the first name that her birth mom ever whispered in her ear, is doing well and is loved and cared for. I hope she feels in her heart how much we love her precious daughter and how much she has added to our family. "Wishing her to be prosperous in the new year."

Sofie has been asking lots of questions about her adoption lately. She knows that she lived in China before Mommy, Daddy and Ainsley came to get her. She somehow managed to find adoption gotcha day videos on You Tube and was watching them the other day. Wow did that ever fuel a ton of questions which I tried to answer as best I could. A few weeks ago out of the blue she asked me "where Mommy Daddy when I baby?" When you have a child who, for almost and year and a half, could not verbalize a question so that the listener can understand suddenly starts asking about her adoption, it kinda floors you. You become somewhat complacent in your day to day routine and the adoption subject never comes up until one day.....wham it does. It is like you almost forgot she was adopted as you fumble through life. Then it hits you! I am supposed to answer these questions and do a good job answering them. You spend so much time and effort into helping her learn to talk that you forget about all the adoption and birth family stuff that is going to come up when she can talk until it smacks you in the forehead. I hope I did a good job explaining things to her. I have definitely decided that I NEED to put an adoption video together for her so she can watch her own story. I have procrastinated about doing that.

I promise that I will try not to let 2 months go by without a post. I can't believe it has been two months. I will post about Christmas and all our goings on since then, soon. Until then,

GONG XI FA CAI

 

Thankful

A belated, one day late, Happy Thanksgiving to all. We had a lovely day and celebrated with friends. Good food, good friends and good times. Ainsley and Sofie actually painted coffee mugs for both Jim and I for thanksgiving. They are too cute....so are the mugs :)

It has been a very thoughtful, reflective week for me. A time to take stock of our lives and realize all that you have to be thankful for. I didn't even know where to begin, I have so much to be thankful for. Family, two beautiful daughters, health and wonderful friends in all aspects of our life. I have great friends who lift me up when I start feeling overwhelmed, a wonderful husband who always pitches in and tries to help out however he can. I have also met a group of adoptive Mom's from this area and we have started trying to get together once a month. No kids, just Mom's. It was wonderful to sit down in a room with people who have been there done that. Very uplifting! The wine and snacks were good too!

I finally sat down and looked through Sofie's memory book again, the one that the orphanage gave us. It was a very emotional trip down memory lane. For the first time, I also showed it to Sofie. I hadn't showed her yet as I wasn't too sure how she would do seeing pictures of herself with her lip unrepaired. A little voice inside my head always told me to wait until she was better able to express her emotions verbally. And express them she did. She did not like the pictures at all! We talked for a while about how her owie was fixed now and eventually she calmed down. She was fascinated looking at herself as a baby. She has seen pictures of Ainsley as a baby and now pictures of herself as a baby. In the book were also lots of pictures of her nanny. I think about her all the time. Sofie seems to hold such adoration for her. She loved her girls like they were her own. I could tell that by the look on her face at the orphanage when Sofie said goodbye. Two of her little ones were adopted within a week of each other. The heartache on her face was unfathomable. My friend has a picture of the nanny holding Sofie, saying goodbye to her other little one the week before we got there. Sofie is just staring at her nanny with a serious look of concern and caring on her face. This picture is ingrained in my brain. I love this woman for looking after our little peanut and for teaching her how to love and be loved. I wish I could call her or see her and tell her that. I hope she knows that Sofie is doing well. I have sent her pictures and letters but I have no idea if she has received them.

Yesterday marks two years since we saw a picture of Lu Jing Jing for the very first time. The very first time we were able to gaze at the face of our youngest daughter. The very first time I was able to show Ainsley a picture of her sister. After 3 years of wondering, it was a surreal experience. Ainsley very much travelled through the ups and downs of adoption with us for 3 years. As much as you try to shelter your child from the gory details, they are so smart and intelligent and pick up on so much. To be able to show Ainsley a picture of her actual real soon to be sister was a moment I will never forget! Tomorrow also marks the 2 year anniversary of when we officially told the Chinese government that we would like to proceed and adopt Lu Jing Jing. That was also the day when the huge emotion of seeing our child was replaced with the urgent and unending need to get on a plane and go get my daughter NOW! Oh such fond memories of the roller coaster that we rode on our path to Sofie.

It has been two years since we first saw this little face. Two years, and look where they are now :)

Holland, not Italy

A couple of friends have shared this article with me. I absolutely love it. Sometimes as adoptive parents we are afraid to say that this is really hard. Raising a child with any kind of a medical condition is hard. It is a lot of appointments, sometimes a lot of surgeries, a lot of patience and a lot of work. Yet we are afraid to say those words out loud. I don't know if we are afraid of the day that someone says "tough, you decided to adopt. You knew what you were getting into. Deal with it." I don't know if we feel that we don't have the right to complain. All I know is that it is hard to utter those words so instead we have a stiff upper lip and just muddle through it. I can't imagine what all the adoptive parents did who came before me and didn't have the internet and long distance friends to help hold them up. I commend them for making it through the tough times. 

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Halloween has come and gone

Ainsley went to a birthday party yesterday at a friends house. Sofie and I went to go pick her up and the end of a party and I was talking to the Mom who hosted the party. Sofie was doing her usual come on lets go this thing is over talk. She doesn't like it when I sit around and chat. She is all business! We were heading out the door and the Mom turned to me and said "it is good that we have such strong willed girls (referring to her daughter, Ainsley and Sofie). They will grow up and be just fine. It will be a good trait later in life as long as we don't kick them out first :)" I loved her honesty. I felt like I had been let into the secret club where mom's are honest and not perfect with the perfect family and perfect kids. I wish more mom's were like that. I wish someone would come up to us while Sofie is having a total melt down in public and comment on her how pretty her shoes are! Something to distract her. Instead people give you the LOOK! Poor Mom just can't handle her kids. Ainsley never had a melt down in public. She waited till we got home, then she had tons of them. This is a new area for me and I am still trying to figure out how to grab the child, my purse and whatever else I am carrying and make a quick exit. So, if you see a mom having a hard time with a strong willed child, don't give the mom the LOOK. Don't give her advice. DO distract the child somehow. The mom will be eternally grateful. Think of it as your good deed of the day.....pay it forward :)

Halloween was a blast this year. Not as many kids out as last year, hence, the large candy donation I made at work this year. Share the calories! Sofie totally got it this year. She was raring to go and didn't want to stop. She had a potty accident toward the end of the evening and had to come home. She went and changed into her night time pull up and jammies and then proceeded to head out the front door by herself! I asked where she thought she was going. She pointed out the front door and said "candy" insert goofy smile here. I said no it was bedtime and temper tantrum #1 ensued as Ainsley was still outside trick or treating and Sofie was not. I swear Sofie is a much older child stuck in a little kids body :)

Ainsley had a blast too! She loved her costume and was floating around on a sugar high all night. The weekend before Halloween, all the grown ups were actually going to go to a Halloween party downtown but our nanny got sick so we ended up staying home and had a family party with our neighbors.  We all dressed up in our costumes and had dinner, carved pumpkins and bobbed for apples. Earlier in the day, Ainsley, my girlfriend and her son and I all ran in the Monster Dash 5K. Both kids did super and finished the race right along side of us. The only difference was they weren't gasping for air at the end :)

I have posted a link to some pictures from Halloween.

https://ainsleyandsofie.shutterfly.com/pictures/197

I sometimes wonder if my posts get a little melancholy or whiney sometimes. I can't help it. The happy fun stuff is easy to write about. The tough stuff is the stuff I need to write about. It helps me work things out and I am not good at just stuffing my emotions away. I wear them out on my sleeve for all the world to see and experience. Ainsley is a lot like me. The blog is a way for me to work through things so they don't eat me alive. It is also kinda selfish too. I can vent away and I don't have to listen to anyone's advice. People in general are not good listeners. They feel like when you are talking to them about a problem, they need to come up with a solution for you when there really isn't one. You just wanted someone to listen. You guys are my listeners :)

Last Tuesday Sofie had speech therapy and then an appointment in Audiology so took her to school after and then stayed to observe her class. It was her deaf/hard of hearing class. It was an eye opening experience for all. Apparently she is very well behaved and participates in everything at school and is a good listener, until Mom shows up. Her teacher was amazed at the difference. I think it gave them a better insight into Sofie. Sofie's DH/H class consists of three kids, Sofie and two other kiddos, one has an external Baha hearing device and the other little girl is adopted from China and has a repaired cleft and an external Baha. She is the same age as Sofie. I really try not to compare Sofie to other children as she has had so many different experiences than most kids her age. These two little girls are so alike and then so different. The other little girl was adopted at a much younger age. I am starting to realize how important it was that Sofie was not able to properly hear people talking during the time when babies absorb hearing language. We always try to remain positive with her progress. Any small step in speech for Sofie is monumental. We have been trying to work on the T sound at speech. She has a very hard time with it and has gotten very frustrated with it. She won't even try now so we moved onto a new sound. The other day she came home from daycare and she walked up to me and said clear as day "butt" complete with the T at the end. She said it over and over again. What do you do. We now practice T by saying butt. You pick your battles. I left her school feeling like I had been hit by a ton of bricks. She is miles behind the other kids, miles behind the other little girl. I knew she was behind, but, it just hit home how far behind she is. I pray that she will suddenly blossom and start speaking clearly and never stop. Right now, it is very small steps. Part of me is very hopeful and part of me is very scared. Most of me is so very tired from all the running around that I don't have time to worry about it.

Our lives are so full of so much joy. It is amazing to watch Sofie and Ainsley together. It's as if Sofie has always been here and she and Ainsley have always been together. Some days are just a little tougher than others :)

Coming up on Halloween

It is an exciting time of year. The kids are super excited about it. Ainsley has her costume all ready and Sofie is very pumped up about it this year. I don't think she really understood it last year. She gets it now!! She has been practicing her best kitty cat meows and is ready to go out and get tons of candy, her favorite treat. Both girls are also in dance classes this year and they absolutely love it! I will post the Halloween pictures after the festivities are over and, yes, the dog has a costume again this year too!

Sofie had her follow up appointment with the ENT surgeon. Everything is healing nicely and looks good. We still won't know if her surgery was a success for another 4 months. They wait until 6 months post op before they re evaluate her. It will be her speech therapist who will determine this based on how her language has progressed. This is the hardest part for me. There are a lot of sounds that she can say, she just can't repeat them on a consistent basis. It just accidentally happens. She still is learning how to use the new anatomy and we are not sure how much impact her hearing has on everything. While she can hear great now with her hearing aids, she was deprived of that during the time in childhood development when you learn to hear and understand language. I find myself willing her to make a break through with her speech.

I no longer have short term goals set or expectations that such and such will happen by this time. Things will happen when they happen and not a moment before. They are out of my control. All I can do is try to help Sofie as best I can. I have one big long term goal that I pray will happen sometime. That Sofie will be able to be understood by people and be able to start Kindergarten with other kids her age. So many people have told me not to worry about it. Sofie is amazing and she can overcome anything. What I have had a hard time putting into words is that I know that she can overcome any difficulties that life may throw her way. She is amazing! I just don't want her to have to overcome anything else. I just want to keep moving forward and not have to worry about her overcoming stuff and just let her be a kid.

I have to admit, I was not prepared for some of this. Most of the cleft issues, yes. The exception would be her last surgery. The hearing issues have definitely had a learning curve attached to them.  It is still the one thing that can just set me off. I like a schedule of every 3 months you go to audiology and you do speech twice a week etc etc. We have never made it the whole 3 months without having to head to audiology for something. Something breaks, comes apart or needs to be glued again or her ears grow and we have to have new ear molds made AGAIN! Next week we are going back to have new molds made.  We weren't supposed to go back until mid December for a hearing test. I know compared to some peoples problems, this seems minor, and it is. I think is stresses me out because I have 3 days to fit all her appointments in and then I work the other two days.

Still, all she has to do is utter that awesome laugh that comes from deep within her soul and all is right with the world. All I have to do is watch Sofie and her big sister walk hand in hand down the cul de sac to play with their friends and my heart is at rest.  All I have to do is watch the amazing effect that she has on other people she interacts with, and I know she will be OK. I know she can and will overcome anything that life throws her way. I just pray that she doesn't have to.  :)

Slowly getting back to normal

Lots has been going on since we last talked. Both girls started school. Ainsley is now in Grade 3 and was very much looking forward to school this year. That is a complete change from the last couple of years. Change seems to stress her out a whole lot but this year she is excited and has been doing her homework with little complaint. I cannot believe how grown up and how tall she is getting. She is such a good big sister to Sofie. She even takes her outside with her to play with her friends. It is so cute. She is my sweet, sensitive child who wears her heart and emotions on her sleeve.

First day of School for Ainsley

Sofie started preschool a week later. She was sooooooooo excited. Tuesday and Thursday she attends a small class with her deaf and hard of hearing teacher. There are only 4 of them in the class and they all attend a regular preschool class together, with their DH&H teacher, on Monday and Wednesday. During the week she also receives two sessions with her school speech pathologist. She then also attends two sessions a week with our private speech pathologist through the ENT Department. It is a busy week. She is getting so big and growing up so fast. She even takes a school bus to school and just loves it.

 Sofie's first day of Preschool

Next week we have our follow up appointment with our ENT surgeon. I am very nervous. Her speech has changed a little, and not at all. Even her speech pathologist says that we are pretty much starting over again. It can get very frustrating. We don't see little changes though as we are around her all day. I knew going into the surgery that we wouldn't really see much change initially, that it would take time. Reality is much harder. She is still has a very hard time saying P and B at the beginning of a word. I am so scared that she is not going to be able to talk properly at all. I know it is all out of my hands and whatever happens, happens. It is beyond my control. Tell that to my heart.

Sofie has regressed a lot since the surgery. She is much more clingy with me and wants me to do everything for her and not Jim. Her sleep and potty training both took a huge leap backwards. Her night terrors have returned and she hardly ever sleeps through the night anymore. We are all tired and our nerves are shot. Still, she is such a joy. I look at her somedays and I can't believe that she is actually here now. EVERTHING is so new and awesome to her. She is such an old soul in a little persons body. No one frustrates me more and then turns around and makes me laugh and smile. She is Sofie. There is just something about Sofie :)

Slowly Improving

Sofie is slowly getting better day by day, at least during the daytime hours anyway. Night is another story.

She is still being a super picky eater. She turns down almost everything. She will eat egg whites with cheese, some ice cream, some Pediasure, some mushed up pancake, puree lasagna (????) and brown sugar. The latter was because Mommy gave up and I don't care what she eats anymore as long as it has calories. She is a little happier during the day and has been playing more and more. Ainsley seems to have gotten over the lack of attention from Mommy and Daddy and is being very helpful with Sofie.

Nighttime is a totally different thing. Sofie falls asleep no problem but wakes up at some point during the night. She then is very restless and coughs and sounds like she is choking for the rest of the night. The fluid just seems to build up in her mouth and she has problems breathing and swallowing when she is laying down. I have tried propping her up on pillows but she is so restless she just rolls all over the place. Needless to say, whoever is lucky enough to be sleeping with her, does not sleep much. That would be me :)

Her surgeon has now prescribed prednisone to try and reduce her swelling and secretions a little quicker. Hopefully that will help with her breathing at night and we can all get some sleep :)

...one more thing

I have had great support from friends and family, but, I noticed that several people, including relatives, sent me text messages after the surgery saying that they would have texted earlier but didn't want to bug us. We want to be bugged. It is such a lonely place when you are in the hospital with a sick child or home recovering. You really need someone to just reach out and say hi. You are doing awesome. Don't get me wrong, we had a lot of support and a lot of good wishes. I just wanted to reach out to those who think you may be bugging us.....you aren't ..........we love it.............we are floundering and have no idea what we are doing. Just say hi, thinking of you :)

I have no idea what to call this post

Sat August 24

I went for a run today. It was the worst run of my entire life except for maybe the time as a teenager when I fell and had rocks embedded in my knee. Today was over 90 degrees but there was a wind and I really needed to get out of the house after being home for 5 days without leaving except to hang out at a hospital. Running always seems to clear your head and you have nothing else to do but think and listen to Pink blaring in your ears. Half way through the run I started crying. I had no idea how much I had been keeping locked up inside. It was very cathartic and something I really needed. I feel better now, empowered. I can handle almost anything :)

This post will probably take me several days to finish. I just do not have the time right now. I will post the date I write each section, but, I will follow the events in chronological order.

Sofie's surgery lasted just over 2 hours and went very well.  At some point in the pre op stuff it was mentioned that she would have a palatopharyngoplasty and not just a pharyngoplasty. The difference is that instead of her palate being just elongated and narrowed, they would be taking the prior palate repair apart and redoing it and elongating it and narrowing it. I missed all that. I don't know if I was out of the room, not listening or had just blocked it from my consciousness because it was more than I could handle. I didn't find out until 2 days later. Some things happen for a reason. She has over 100 stitches in her tiny little mouth :(

She woke up in the recovery room and proceeded to scream bloody murder for 2 1/2 hours. Nothing would touch the pain at all. She would fall asleep for 2 minutes and then wake up and scream. Her breathing was awful and she couldn't swallow so all she did was gurgle. Suctioning her was difficult with all the sutures in her mouth. We had been trying to stay away from morphine as it made her itch before. Not an allergic reaction, just itchy. It is a side effect. It was the only thing that worked and it would only give an hour of pain relief but could only be given every two hours. It was a nightmare and I felt so bad for her.

Sun August 25

We finally reached our room where the afore mentioned scenario went on for the rest of the day and all night. She was itching like crazy from the Morphine, but, the Benadryl seemed to take the edge off. She would have about an hour to hour and a half of comfort and then she would get agitated and start screaming. Her breathing sounded awful when she was sleeping. During the night her O2 sats dropped into the 80's periodically so she ended up on oxygen all night. The alarm on the O2 monitor went off all  night and none of us got much rest, including Sofie. By morning we were convinced that we were staying another night. She was still on morphine and oxygen and I just couldn't see us going home that day at all. Suddenly, right before the doctors made rounds, she perked up. Jim and I were looking at each other with a stunned look on our faces. This child knows what to do to be sprung from the hospital. She continued to improve throughout the morning but we had to bribe her to drink. We told her we could disconnect her IV pump is she drank half of her apple juice. She did. The clincher to the deal was when she started riding the tricycle up and down the hallway towing her IV pole and pump. That is not an easy task let me tell you. She doesn't slow down to let you and the IV pole catch up. We made it home by 4:00 pm. It has been up and down since then. This is by far the most difficult and painful surgery she has had to date. It has been hard, hard on everyone.

Mon August 26

Sofie finally turned the corner today, or so I hope. She has perked up a little more. She is eating a little bit and is finally drinking fine. We are going to try just Tylenol and Ibuprofen tomorrow. She snores and coughs all night long and sounds like a freight train when she is breathing. She it irritable and angry and every time she has to take any medicine, it is a fight. My Mom and I had to hold her down today. I haven't had a full nights sleep or even half a nights sleep for a week now. Neither has Jim and neither has Sofie :) Ainsley is completely out of synch and stressed out. She is acting up and being very defiant. Today was better for that too. Baby steps.

I want to extend a very heartfelt and warm thank you to my Mom and Dad and Aunty Joyce who came down this week to help us with Ainsley and Sofie. We would have been lost without them. I am overwhelmed with their thoughtfulness and generosity of their time and love. We had a warm meal at dinner every night, dishes were done, laundry was even done and I didn't have to buy or go out to get any groceries. I love you Mom and Dad and Aunty Joyce and we truly appreciate all you have done for us and our girls. I am going to miss the muffins :)

I am not going to sugar coat it, this was the toughest thing we have ever done. None of the other 3 trips to the OR remotely prepared me for this. It is brutal and tiring. Nothing like her prior palate repair. She is very angry and keeps asking me WHY as she points to her throat. It breaks my heart. We will not know for 2-3 months whether or not the surgery worked. If it didn't, we will be going back to the OR again. She will be prone to sleep apnea and will not be able to breath through her nose for at least 2-8 weeks. Her voice and the tone of her voice has totally changed. I was not prepared for that. I am hoping that once the swelling goes down it goes back to normal, but, only time will tell. I miss her little giggle and her voice. This is so much harder to write than I thought it would be. Wow, this is hard. The words that she was able or almost able to say are much clearer now which is a fantastic blessing and very uplifting. The phrases and words that she did not say very well or properly have totally changed. It is like she is speaking a totally different language and none of us understand it at all. It is so frustrating for both her and us. All the things I used to understand or be able to figure out are just gone now! I looked in her mouth and almost started crying. I don't know why it is so different than the palate repair? She had just as many stitches for that surgery as she does for this one. It just really bothered me to see it looking so differently. How do you explain to a 4 year old who is much wiser than her years why Mommy and Daddy took her to have her mouth fixed again.........baby steps :)

Surgery......again :)

Tomorrow is Sofie's sphincter pharyngoplasty to correct her Velopharyngeal Insuffiency. Say that fast 3 times :)

This is her fourth trip to the OR in the last 15 months. This is probably the hardest one. I don't know if it is because she is much more aware of what is going on now or if it is just Mama jitters. She was very strange at her pre op appointment last week. Very cautious and not her usual lively self. She was very much aware that something was up and this was very familiar to what she did last month. Nothing gets by this kid. Jim sat her down and had a talk with her this morning about what was going to happen tomorrow. She nodded her head and then went on her way.

All her other surgeries have been the typical ones that all cleft kiddos go through. This one is slightly different in that not all cleft kids have to have this surgery. The other surgeries were pretty routine. Fix the lip, palate, hernia and teeth and away you go to speech therapy. Of course, we made a pit stop in audiology but I digress. This one is stressing me out. So much is riding on this surgery. How she will talk and be able to pronounce words and consonants. To me at least, this one is major. Lots riding on it. Of course our surgeon is wonderful and I totally trust him. He even told me that this surgery is totally adjustable and tiny modifications can be made at any time, which, is another surgery at another time! Not what I needed to hear, but necessary.

It is 11:50 pm and I need to go to bed. I think I am afraid to lay down with my thoughts. I really don't want to do this again, but, I know I have to. Sofie is so much tougher than I am. I wish I could do this one for her and spare her the pain again :)

Another interesting read

Here is another informative and interesting read

https://www.facebook.com/ConnectAkid/posts/475153969248023

Random thoughts

We just got back from a vacation to our home town. Two weeks in the Great White (not white this time of year) North. The weather wasn't that great. Cooler than normal and we only had 3-4 real good sunny days. The kids still had a blast playing with all their cousins and hanging out with family. Sofie had a couple of birthday parties while we were there. She turned 4 on August 14 and Jim and I celebrated our 20th wedding anniversary on the same day.

My Mom hosted a birthday tea party for Sofie's birthday party. We had tiny finger sandwiches, pickles and cupcakes. My Mom also brought out her fine bone china teacups for the party. They are 47 years old and were given to my Mom and Dad at their wedding. My Mom is a brave woman handing over antique tea cups to 6 kids with the youngest being 3 going on 4! When we placed the dainty pink teacup in front of Sofie, her eyes lit up and got as big as the saucer under the tea cup. It was an amazing look on her face, she couldn't believe that she got to drink tea (loaded with sugar) out of such a fancy cup. My Mom is still talking about the look on Sofie's face. It is moments like these that you come face to face with how different Sofie's life was before we became a family. Another other 3 year old would have had an amazed look on their face when handed a fine teacup. Sofie's look was still different. It was MORE! It is so hard to explain it. You had to have been there to realize how different it was.

I try explaining this to people, even family, but no one seems to really understand. You always get the answer of she is just 3 or she won't remember any of her past when she is older. Some memories will fade, but, I don't think the real terror of moving from place to place or from care giver to care giver will ever truly leave them. I don't blame people. It is hard to understand unless you have lived through an adoption. I just wish people would slow down and actually listen and try to learn instead of just dispensing advice that you never really asked for in the first place :)

Every once in a while, Sofie seems to lash out at me or push me away. It rarely happens in public or while others are around. It rarely happens to Jim, usually just me.  You have to remember, she had female caregivers and males were usually in a position of authority so it was usually the female who left her or abandoned her. It is as if she needs to push me away just to see if I am actually going to stay. No, it is not typical 3 year old behavior or the need for independence or anything else. I have raised another child through the 3 year stage. It is much different and more intense.  It never lasts and she is always sorry after and very affectionate. She is usually fine and I am the one who is emotionally hurt. I have learned to get over it quickly though and listed below is the reason why. I have figured out why she does it and I no longer take is personally. It actually makes me very sad for her.

I loved this analogy that was posted on the blog of an adoptive Mom. It sums it up just perfectly. You just have to use your imagination and imagine a child going through much the same process. You have to remember that Sofie went from the orphanage, to a hospital, to the healing home with Love Without Boundaries, back to the hospital, surgery, to LWB again and then finally to the main orphanage all with in 2 1/2 years.


http://thesweetfamilylife.wordpress.com/2013/08/16/wow-look-how-much-your-adopted-daughter-fits-right-in-and-what-attachment-really-looks-like/


A couple of funny things happened while we were on vacation. I was the recipient of probably two of the dumbest comments that another person has ever said to me. The comments didn't really upset me, I was more dumbfounded by them.

Sofie was at the park playing very nicely with a little boy who was a year younger than her. All was well until Sofie tried to play catch with the little boy and the golf ball that he brought along to play with. You can see where this is going, right! Yep, Sofie hauled off and threw the ball at the boy and nailed him right in the shin. She had this look on her face like why are you crying? You are supposed to catch the ball. I made her go over and apologize and give him the ball back. At this point, the little boys grandfather and I start talking. He asked me how old Sofie was and when we adopted her. First faux pas. He hasn't seen the Dad so how does he know she is adopted. Ainsley was nowhere around then either. I then told him our family story at which point he asked me " so you couldn't have kids then?"
Major faux pas on so many levels that I will not even get into it with everyone :) I then proceeded to point out Ainsley to him, not that it mattered but it was all I could think of saying as I was to floored by him comment to come up with a coherent answer.

Number two came from someone who knows my Mom and Dad so they will remain nameless and anonymous. Sofie was playing in their yard so I went over to check on her. She was having a blast and getting her nails done. The individual in question then started talking to me about Sofie and how wonderful she is. At that point, she turned to me and in front of all the kids, asked me if Sofie was SLOW. She actually spelled the word out loud right in front of her. She then scrambled as the look of my face must have been one of pure astonishment. She stated and I quote " not because of her speech but because of how she is walking." WHAT!!!! I told her that no, Sofie was developmentally on track and in fact she is probably able to figure out what you just spelled in front of her!!!!!!! I was dumbfounded and in shock. I really wanted to punch her lights out but I feared that it was not a good lesson to teach the children :)

I know that there was no maliciousness meant in either comment. I am sharing this with you to educate. Be very careful what you say to an adoptive parent and be even more careful what you say in front of an adoptive child. It is not fun to be singled out or to be labelled as different or abnormal.  The same goes when an adoptive parent is reaching out talking to you telling you about their life. They don't want advice, they have Facebook for that, they want someone to just listen and even if you don't understand, for you cannot understand unless you have walked that walk, just listen and give a hug. That is all we really want. Someone to listen and say "that must be really hard to deal with." Empathy.

Thanks for listening :)