Cardiology Appointment

Last Tuesday, November 2, Gracelyn went in for a check up. This was one of the most positive appointments we have had over the last year. Not to mention quick. We were back home within four hours. They checked her O2 saturation and at one point she hit 91%. That wasn't what we were expecting. I don't know why because she has been beautiful and pink! Her x-rays looked great as well! Her doctor was very pleased with how she is doing. She is still only in the 5% on weight, but she has consistently stayed there. She may just be a little girl. The cardiologist loved her chubby, rosy cheeks. ME TOO! We also took another huge step. Gracelyn was removed from her Propranolol (beta-blocker). It is the medication that has controlled us over the 11 months. We had to give it to her every 7 hours. The Propranolol was used to control her tachycardia. Originally when they put her on it they hoped that it was only caused by surgery and that it would be gone in a year. They are hoping it is now gone. She was taken off of it for a week and today we go to Primary's to have a monitor hooked to her to see how she is doing without it over the next little bit. We pray all is well. It has been nerve racking with her not on it, but wonderful!

We are so blessed to have her doing so well. It was wonderful at this appointment to have no talk of surgery. We know it is in the future, how far we don't know, but for now we will go on with "normal" life. She doesn't go back until MARCH! At that time they will do an echo on her.

10 Months Old...

Gracelyn turned 10 months old yesterday. This month we have seen the most change in her since she was born, something has happened and she has become a completely different baby- minus the sleeping part. She went from a baby that would just sit there, to a crawling, climbing, standing, talking, laughing little lady. We are having so much fun with her! She got her first two teeth within two week of each other (Bottom two-Left 9/26 & right 10/7). She began to really crawl while we were in Indiana. She is such a tease and will copy things you do. She thinks it is hilarious when people wear hats. She is still quite feisty. I thought it was going away, but this week she began to growl at us when we do something she doesn't like. It makes me laugh every time. She has gotten better about others holding her. She loves her daddy! I really think she flirts with him. Health wise she is doing great. We go back to cardiology in two weeks and to the ENT doctor in three weeks. Our pediatrician doesn't thing the tubes are doing anything. He can't see through them at all. As much as I hope they are okay, I would like to find a reason for her not sleeping. She is getting really good at sign language. She has perfected eat and more. Maybe we'll work on more this month. Her new words this month are hat and Andee. She'll crawl around saying, "Mama, Andee, Mama, Andee..." She likes to pinch, and it hurts! She eats a lot of what we do now and she really is enjoying eating...who doesn't? Actually, she likes to eat everything she finds so to prevent more of the Heimlich we have had to create a "cage" for her. She is all over the place and it was getting hard to get anything done. We've made a big area upstairs where she can do whatever she wants. Oh the joys of crawling.

Indiana...

Three weeks ago my beautiful baby sister had her first baby...in Indiana. I really wanted to be with my sister during this time, in fact there are very few things that I've ever wanted more. However, because of Gracelyn I was nervous about flying alone, seeing that my parents were already there. We'd been instructed to put Grace back on oxygen whenever she flies. That didn't excite me. I can't keep a bow on her head, let alone tubes blowing air up her nose. My dear friend called to ask how the delivery went and asked when I was leaving. I told her I was afraid to fly alone and that we couldn't afford to fly our family there. My friend's brother flies a lot for work. She told me we could possibly get buddy passes and asked if I wanted her to look into it. Why not? I gave her a budget and dates and she got right on it. After talking with Delta and her brother she came to my house with the bill and the itinerary. $37! That was it. Her generous brother gave us miles to get the whole family there. He even got Gracelyn her own seat so that she was comfortable, having to carry the O2 concentrator and all. All I had to pay was $37 in fees. Really?!? Over the last few years I have lost a lot of faith in people and their kindness and integrity. Unfortunately, it has taken me having a sick baby to realize that the world still is full of so many generous people who truly care and are filled with the pure love of Christ. I really have so many of them in my life. They know who they are and I am grateful to them all.

Back to Indiana... We had a week to get things together and board our flight. It was a little trickier that I thought. We had to arrange O2, they require a months notice to get one of the FAA concentrators rented. When I called it happened to be available. Next I needed to get the doctor to look her over and sign a statement with a description of what her diagnosis is, the amount of liters she requires and get it faxed. We had to find a way to and from the airport...Thanks to my brother for help with that!! We had originally planned to kennel our dog, but Jeff changed his mind... His sweet sister helped with taking care of him every day and keeping an eye on our house...Thanks Val! We couldn't have done it without you! I had to get a medical history typed up. That took some time, but it something that I have needed to do for a while. I had to get a car rented. Enterprise was wonderful to help out with the cost! I explained the situation to them and I ended up getting a BRAND NEW van less than what a small compact car would have cost. Hardest thing to do was to keep it from everyone. I didn't want anyone to know we were going, with exception of my brother-on-law. I thought I'd better get permission before just showing up to their house.

We got everything arranged and headed to the airport. We thought it would be a good idea to get the tender grips and O2 on Grace early. I didn't want to put it on on the plane and have her melt down mid take off. Ends up it was a good plan. She cried the whole way to the airport. We got checked in without any problems at all. In fact, Delta was great! We had a lot to get on the plane...stroller, car seats, O2, carry-ons, 2 kids...but we made it. Quite easily actually. Then we were ready to take off. At one point I told Jeff I wanted to put the oxygen on me. It is only a 3 hour flight, but I was nervous about Gracelyn. I think I packed about 1700 suckers just because I knew from the doctors office that they would keep her happy and more importantly quiet. I've said it before, but my kids never let me down. When I need them to behave the most they always pull through for me. They were both great! Didn't even need ONE sucker.
We landed and headed to our hotel. We got in late and I didn't want to show up on the doorstep at 1 a.m. in dirty airplane clothes. I was able to priceline a really nice hotel room by the airport for $30!This is what Mr. C imagined them to look like when they saw him. The next morning we got up and headed to W.g. Grinders! Grinders is a restaurant that we use to own in Layton/Clearfield. We couldn't be so close to one with out stopping there. We were so excited. It tasted wonderful!Then to my sister's house. As we were coming around the corner I text my mom to see if she wanted to Skype us. She said they had just left on a walk. BLAH! She said to give them an hour or so. Now what? They ruined our plans! I knew the area from visiting last fall. I told Jeff I could find them. We drove for a minute and came right up on them. We didn't know what to do. Mr. C decided he wanted Jeff and I to hide while he rang the doorbell. So, we decided to mess with them. We stalked them for a bit. We drove past them five times and even got a few pictures to prove it to them. He he! So fun! Finally they turned around and we headed back. We parked where we could see them coming back. Once they were back we pulled around the corner and waited for them to go inside. They never did. Finally I thought I would mess with my mom and ask if they were back yet. She responded to turn on Skype. They decided to sit out side and skype. Time for a new plan. None of the yards have fences, so we decided to go through the neighbor's yard and have Mr. C walk up to the door. This was our response....I was convinced they knew we were coming, but by the reaction I'm pretty sure it was a surprise!

Indiana is beautiful this time of year. I really had no desire or reason to return. We had a great week being with my parents, sister and her beautiful new baby. She is absolutely beautiful and I am so happy to get be her aunt. It was great to watch my sister become a mom and finally know what it is that I feel for my kids. I love them all so much and I miss and need them so bad it hurts some days. It's nice to have someone who knows me, who I truly am, and my sister, like my mom, really understands me. She knows my intentions and my sincerity. To be around her just felt great!

I can never repay those who arranged for me to have such a great opportunity. Never have I had someone do something so kind for me and my family. Thank you Mark! Thank you for your kindness! I pray Heavenly Father will bless you and help you find those things you may be in need of. Your generosity will NEVER be forgotten.

Heart Walk

On September 11, my family and my parents drove to Provo for the annual Intermountain Healing Hearts Heart Walk. I must admit I am getting more comfortable with these gatherings. The IHH arranged for a 1 mile walk to bring awareness to Congenital Heart Disease. They had around 700 people participate! What a great turnout! As hard as it is to be a part of this group of people it was great to walk among them. Their courage and strength is overwhelming. It is a group of amazing and strong people who I look up to.Before the walk started they began a silent auction. I wanted to be able to give back something for all that we have been given, so we decided to donate a new product I have fallen in love with. I filled it full of pictures and stated that it was donated in celebration of Gracelyn- CHD survivor. We were able to get $75 from it. * Side note: Jeff and I are now selling these. Our website will be completed soon. You will be able to purchase them there. If you are interested in them now, just send me an email. We have a couple different sizes and colors.After the walk we were able to take a picture with most of those that participated. First just the CHD survivors and then the whole group.
Then they held an angel ceremony. It was a little hard to sit through. Families had the chance to release butterflies on behalf of those they had lost to CHD. During the ceremony one of the butterflies flew to my mom and landed on her shoulder. It stayed there for a good half hour.Once again I am very grateful to the IHH committee for all they do on our behalf. I am also grateful to my parents for going with us and being a part of something that means so much to us. I love you both! I couldn't make it without you!

9 Months Old...

This picture describes Gracelyn perfectly. Everything she finds goes into her mouth. We've already done the heimlich several times.
She wasn't in the mood for pictures. We couldn't even crack a smile. She just wanted to sleep. Maybe next month will be better.
The lady of the house is now 9 months old. She is sweet, feisty, adorable and funny all rolled up into a little ball of chubbiness. Everywhere I go I am told how chubby she is. Ha! Those cheeks of hers sure tell a great story. She had her 9 month well child check up this week and the doctor told me three times that he couldn't believe how great she was doing. It is so nice to hear! The only concern with her is the size of her head and her ears. No surprise there! Her weight has been consistently at 5% but her head has been all over the place. We are going to watch her for a few months and then do a cat scan. I tried to reassure the doctor that it is a normal thing for her to have a big head. Her last name is Sanders after all. :) Just look at her dad and brother. Her ears aren't so great either. She is back on antibiotics again. The doctor thinks that she doesn't have her left tube anymore. We find out tomorrow if we are head back to Primary's for another ear surgery. :( Gracelyn has had a couple changes recently. She started to crawl last Sunday (Sept. 19) It was just an army crawl, but she is getting around. On Monday (Sept. 20) grandma was watching her and she rolled over to a coffee table and grabbed it and stood up. She had her first tooth pop through on Wednesday (Sept. 22). She has added to her vocabulary and now says brother (Bu-ba), dog and Grandpa. She has certainly checked into life. She is so fun to have around. She is learning to stand up to her brother when he starts to drive her crazy. She screams and swats at him. She is a big tease! Again, just like her dad and brother she likes to tease me. Every morning when she wakes up the first thing she does is look for her brother. She starts asking, "Bu-ba? Bu-ba?" She has FINALLY started going to other people. She will dive at her dad when he walks in. She has also left me to go to grandpa and her brother. Grandpa has taught her to wave hello and goodbye and signal for someone to come. It is just about the cutest thing I have ever seen.

At nine months old Gracelyn...

-Has the entire house wrapped around her finger

-Has super chubby cheeks

-Still hadn't found the need for sleep, she wakes up every 2-3 hours

-Says: Dad, mama, dog, brother, grandpa, hi

-Can sign: More, dad, grandpa

-Hates vegetables-she dry heaves whenever I giver her anything green. She must not be mine.

-LOVES to be put in the shower
-Always has her hands in her mouth
-Eats everything she can get a hold of

-Army Crawls

-Is wearing her 3-6 month clothes...finally

-Is a binki addict

-Takes .83 ml propranolol 3 day

-Takes 1/2 aspirin daily

-Weight: 15.13 pounds 5%

-Height: 26 1/4 inches

-Head: 18 inches

Heston James Brian

Today a sweet friend of mine laid her little boy to rest. The hurt I have felt for her has almost been overwhelming. I can't imagine and I pray I never have to know what heart ache she is feeling. Since the day he was born she has been an example of a great mother and what unconditional love is. I am grateful to have had the chance to know this little boy and have been touched by his mother's love. I know without a doubt she has a special mansion in Heaven. I find joy in knowing he is now free of his mortal body and all it has held him back from. He can now run, play and giggle like a three year old should. Please keep his mommy and daddy in your prayers. I love you Tiffy! Heston James-You have a great mommy. Stay with her always. Help her to find peace and know that she will be with you again soon.

A memorial fund has been set up with Golden West Credit Union to help the family with all the medical bills and funeral services. It is under his name Heston Brian.

More Firsts for the Little Lady

We have been having fun with more firsts from our little lady this summer. With her being smaller I think we forget how old she is sometimes. She had been getting frustrated watching us eat so I decided it was time that she got the enjoyment of feeding herself dinner as we ate. She got a nice bowl of carrots and bananas. She ate every bit of it and enjoyed every minute of it. She was a mess. She headed straight for a bath when she was done (maybe that's why we haven't done it yet.)

Since I was little we have gone camping a lot of the summer. We still go camping with my family nearly every weekend during the summer. It has been fun to be able to take my kids where I spent a lot of my childhood and see how they enjoy it. Gracelyn's first night camping was GREAT! She only woke up once! I decided I would move there if it continued. It didn't! My dad and grandpa built a playground for us kids when we were little. Now Mr. C and Gracelyn are enjoying it. Gracelyn finally got a chance a swinging on her own and she loved it! She giggled and squealed the whole time. My dad and Mr. C walk the river a lot. One weekend they decided to put Gracelyn in with them. It was cold, but you can see how unhappy it made her...

Gracelyn also got a first chance at riding four wheelers with us. We strapped her to me and headed up Jeff's parent's property. Again, she squealed the whole time. Whenever you put Mr. C on a four wheeler he goes to sleep, always has. Not Gracelyn. She let the wind blow through her hair and thoroughly enjoyed herself. She is definitely one of us!Earlier this summer we took her swimming. We got a really long oxygen cord and swam where ever we wanted. Again, she loved it! She is so fun and smiles at just about everything our crazy life brings her way.