Hope everyone has a wonderful Thanksgiving!
Monday, November 23, 2015
Last week it was time for the girls to get their flu shots. It's not something I look forward to. I hate knowing Raygen is going to get a shot, but in the long run it is the best thing for her.
I saw this on Pinterest and had to share it. It is the truth. It is so important to keep our HLHS kids away from sickness and illness as much as possible. Even though Raygen has had all 3 surgeries she is still at risk. She will always be at risk. It is important to remember no matter how well she is doing that she doesn't handle sickness like a normal child.
We only made it to school one day last week and it wore her out. She loves running around and watching the other kids. She literally runs for two hours. Once she returned to the office she just relaxed in the recliner till we went home. It was a long day for her.
Saturday was my Dad's 57th Birthday. This is a flash back picture of the night Raygen was born. My Dad stopped the nurse in the hall on her way to get Raygen hooked up to monitors and got this quick picture with her. He was the second person to hold her. It is such an emotional picture for me. Every time I see pictures of her birth this feeling of pure panic rushes over me. I can't put into words how I felt saying goodbye to my baby. Praying that I would see her again. Praying that she'd be okay. Thank goodness I have two men in my life who are my rock. My husband and my awesome Dad. I love them very much.
Raygen got an early Christmas present. Mickey and Minnie and she loves them. It is such an amazing feeling seeing her start to play with toys. I love that she is starting to enjoy Barbie and play with her stuffed animals and she loves Minnie Mouse.
Raygen has been so lucky so far avoiding all the germs and colds, but Saturday one finally got her. She is battling a cough and congestion right now, but otherwise seems to be in good spirits. It's worse at night, like always, when she lays down to sleep. We did take her to the doctor today and her oxygen and heart rate were good and her lungs clear. This is exactly what we needed to hear. We will watch her close and pray that she recovers quickly. We have a Thanksgiving mini vacation planned and I really want the girls to be happy and healthy so they can enjoy it.
Sunday, November 15, 2015
Here is a quick look at what Raygen's breakfast is. She is 100 percent tube fed. She does drink from a cup and likes to lick things, but has no desire to eat. Someday we will get there.
Monday preschool wore this girl out. She came back to work and had to take a nap. Didn't even feel like hitting pause on Elmo, lol :0)
Raygen took a hard fall on a chair at school and ended up with a pretty good mark on her chin. Slowly, but surely it's healing.
Nothing better than licking chips at Grandma's house.
She loves to line all her toys up in a row and have you count them. She is so funny. This is one of her favorite all time things to play.
She is such a sweet girl. We tried to have Christmas pictures done this weekend, but Raygen refused to smile. I hope we got a few that will work for a Christmas card, lol! Can't wait to share them.
Monday, November 9, 2015
Friday was Zoie's 12th birthday and Raygen had a Dentist Appointment in Seattle so we decided to make a day of it. First stop was Tack Room Two for Zoie to pick out one of her birthday presents and then off to Children's for the dentist. Raygen did well. She has no cavities which is a relief. The dentist said she has great teeth with a little crowding on the bottom, but healthy. She does have some calcium build up and that is normal with tube fed children so we are just watching her gums a little closer since the build up could cause her gums to get sore. We will reevaluate in 6 months to see if we should try to schedule a full dental cleaning since that procedure would require some sedation in Raygen's case. She would also need a dose of an a antibiotic before cleaning since the cleaning could cause some bacteria to enter her blood and could go to her heart.
After the dentist we headed to Red Robin for lunch and then off to Toys R Us. Raygen did so good in Red Robin we were all able to enjoy dinner. Every restaurant should have balloons on sticks :0)
We ended the weekend with a great family party. It was so much fun and Raygen was so social it was wonderful to watch. Zoie felt so loved and had such a great birthday. I can't believe she is 12.
Thursday, November 5, 2015
There is something special about the siblings of special needs children. They are the kindest, most understanding, patient, children you will ever meet. They have witnessed miracles and have seen pain. They have given up time with their parents and nights in their own bed for their brother or sister. That is exactly what my daughter Zoie has done for Raygen and so much more. Tomorrow though, November 6th, is Zoie's Birthday. We will spend the day spoiling and enjoying our beautiful 12 year old. I can not believe she is 12 already! Time is just flying by and she is growing into a wonderful young lady. Zoie is very determined. She is becoming a wonderful barrel racer and is very knowledgeable about horses. Her favorite color is blue and her favorite food has to be pizza. I remember the day Zoie was born. It was such an amazing day. Her birth was perfect. I was surrounded by family and she was born healthy and pink. Zoie didn't have a name for 24hours :) Randy and I couldn't really agree. It was between Zoie, Raylyn, or Raygen. We really liked the name Raygen, but my Grandma Judy took one look at her and said "I think she looks like a Zoie." So there it was. So I guess technically my Grandma named her. I can't imagine my life without this girl. She is growing up so fast and I wish I could just hit pause. Live right here for a little while with my two wonderful little girls and just take it all in. Zoie and I always say good night the same way every night weather were together or apart. I say "I love you Zo." she returns "I love you more." and I always end with "That's not possible." I love you Zoie. I hope you have an amazing birthday and I hope you always know how much you mean to me and how proud I am to be your Mom.
Sunday, November 1, 2015
Raygen had her first Halloween Party at Preschool on Friday. She had so much fun. The costumes did not seem to phase her. No one was dressed scary, but there were batman masks and kids with painted faces and Raygen didn't seem to mind at all. I guess when you have made it through what she has, what's a mask, right?
Each day at school Raygen starts to interact a little more. She continues to watch the other kids and even pats a few here and there. When Raygen pats you it means she likes you :) I just sit in awe watching her be a little girl. Part of me has always been scared that my daughter wouldn't get the chance to experience preschool, friends, and even Halloween, but here she is stronger then ever.
Raygen had two costumes this year. At preschool she was a fitness girl and on Halloween she was Minnie Mouse. She was so cute. I thought there was no way she would wear her costume, but she did and she loved it. She even wore the ears. I was so excited. Raygen loved her costume so much she even wore it again today.
Zoie was a runner. She said she was me for Halloween. If you don't know running has become a huge part of my sanity routine, lol! I have a love hate with the sport, but it is something that I crave and always feel awesome after a good run.
I love that my daughter's have the chance to know there Great Grandpa. We have experienced a few losses this year that have really affected our family. For them to have a chance to love and bond with their Great Grandpa is heart warming for me. He loves his grandchildren. My grandpa babysat Zoie a lot when she was a baby. I have some great pictures of the two together. He also gives all his grandkids wonderful nick names, lol and loves to sing to them.
I hope everyone made wonderful memories this Halloween. I know that we did.
Thursday, October 29, 2015
Raygen had a great week at school. She even sat down for awhile and listened to the music.
She loves running around and checking out all the other kids. She is just like a sponge. You see her just absorbing all of it in.
She likes to line all her "O's" on the tic tax toe toy outside.
Raygen also helped the teacher count the gum balls today.
Raygen loves pointing to things and counting them. We do this with everything. I know if she could talk she would sing her ABC's and count all the time. I just can't help but smile when I look at this picture. Raygen has come a very long way from my very sick little girl. I know I say it all the time, but I am so blessed and proud to be her Mommy. She makes me so happy every day. She is always full of surprises and she just makes you happy. It doesn't matter how rough the day was or how much sleep we got, Raygen makes everything better.
Tomorrow is her Halloween Party at preschool. I'm so excited. She is either going to be a work-out girl or Minnie Mouse. Big decisions ahead :0)
Sunday, October 25, 2015
Raygen never ceases to surprise me. I walk out of the room for two seconds and I come back to her on top of her crayon box looking out the window. This girl is not scared of anything.
Looking beautiful for school on Monday.
Laughing with Elmo.
Hanging out at Grandma's.
Each day is such a gift. I try not to take any of it for granted. We have been so lucky. Raygen continues to grow and learn and most importantly stay healthy. I am so blessed. I see so many other heart children, or just children in general, suffering lately that it makes me realize just how amazing my girl is. How amazing God has been to our family and how he continues to keep Raygen close and protect her each and every day. It is important for me to make sure my family continues to reach out to God in good times, not only the bad. Please keep our heart friend Aiden in your prayers. He needs some good luck and lots of good wishes and thoughts sent his way.
Next week will be busy. It's Halloween and wait till you see Miss Raygen and Zoie's 12th Birthday is fast approaching....
Sunday, October 18, 2015
Raygen has been doing wonderful lately. She is picking up sign language like a pro. We now sign: drink, please, thank you, more and are working on help, up, and change. Raygen does a lot with her feet. They are just another pair of hands for her. I just get a kick out of her. You turn around and she's trying to hold her cup up with her foot :0)
Can't ever say "no" to that sweet face. I may be creating a little monster, but I don't care. I like monsters, lol!!
I know what your thinking....She does play with other things then her IPad, but this is usually how our morning starts at the office. She likes to relax in her chair and then by the afternoon she's all over the place.