"But the Lord stood with me and gave me strength"
2 Tim 4:17
I know, I know, I have missed a little over 2+ years of posting. Larry and I felt it was time to take a break from the blog world for a while. Natalie's health was stable and my son came in one day and asked me not to post anything on Facebook or our blog without asking him. I took that as a sign that the world did not need to know our every day life.
I am going to give you all a short update on the past 2+ years of life in our world...
Natalie is now in 2nd grade! I seriously can not believe my baby is 8 years old and a 2nd grader (sniff, sniff and wiping of tears). Health wise, Natalie has been doing amazing! In March of 2015, Natalie had a heart cath over spring break to close her fenestration hole. We did have to spend one night in the hospital, but she did amazing. I personally think one of the worst parts of a heart cath, is having to be still and hold pressure on the incision part for 4 hours! She slept through 3 of the 4 hours. Her oxygen went from the mid 80s to mid/high 90s, where it still is today! We have yearly checks ups with Dr. Zellers. We just went this past July and he said she looks great!
Natalie has also played indoor soccer twice and Upward basketball this past fall. She loved basketball and enjoys being with all of her friends. She also in Girl Scouts and just recently Bridged over to a Brownie. Natalie knows when she needs to rest and what her limitations are more now, which is nice since she is in school all day.
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| When you have play with half a heart, sometimes you have to wear your fleece when playing basketball |
She did get another set of ear tubes and had her adenoids removed in November of 2015. = We went for a final check up in March of 2017. Her hearing was great and both tubes had fallen out. Our doctor, Dr Berg said we do not need to come back, unless we have another issue (so far we are good).
We did have Natalie neurologically tested this past January 2017. There are studies that show single ventricle children like Natalie and kids who have undergone extensive anesthesia the first year of life and cause some learning disabilities. We had a great doctor that travels to Amarillo test Natalie. We did find out she does have a few learning disabilities. I have talked to a few other Heart moms and their children have similar disabilities; crazy! I have so much more of an understanding on how Natalie's brain works and how to help her excel in school. Her school has been amazing on helping her as well.
We also had her annual scoliosis appointment at Scottish Rite this summer. She was born with congenital scoliosis and because of her heart, that best way to treat her when the time is needed, will be to insert magec rods in her back along her spine. They are nice, because it is only one invasive procedure and then the rest is done non invasive, which is huge for us, because of the risk of anesthesia with her heart. If you get a chance to google, magec rods, you should. There is a youtube video that should a patient getting their rod lengthened.
Natalie's curve went from 39 degrees in July of 2016 to 54 degrees this summer. She has grown a lot over the past year, so we had a feeling the time was coming. You know when the doctor tells your child that the nurse has something super neat to show her in the waiting area, that it means one thing... Surgery. We were not surprised by this, we were hoping it would be few more years off, but after much prayer, we realize now is actually a great time in her life and in ours.
She will be having her surgery done at Children's vs Scottish Rite, because of her heart. She will be homebound from school for about 6 weeks after the surgery and will have extensive restrictions for a while. So, we will be adjusting our lifestyle slightly after the surgery. There are a few things that Natalie will not be able to do for the next several months while her back heals and there are a few things, she might not be able to do again, but we will cross that bridge as we come to it. For instance, our Dr was shocked with even let her go snow skiing this past year, but that is something that we will not be able to do this year and are not quit sure about the future. God has taught us not to worry about the future, but to focus on the present. Now, this is not without a little kicking and screaming from me at times, but what else can you do in a situation like this, except fully trust in God and His plan for our lives and Natalie's.
To say I am a little nervous is an understatement. I am trying not to freak out and I keep telling myself God has this, so why do I need to worry. I can tell Natalie has moments where she is a bit nervous too. We are trying not to talk to much about it until it gets closer to time, unless she brings it up. She asked me if she could take a few of her stuff animals with her to Dallas. I told her like any mother would with a child about to have another surgery, "Yes, you take them all." That might have been a mistake, because she has already picked out the bag for them to fit in (there is like 30 by the way).
She did tell my mother the other night, that should would not have 3 zippers vs 1, one in the front and 2 in the back. She continues to blow me away with her positive outlook and for always being so brave! I just want to crawl under a rock and cry sometimes, but I know that will not solve anything.
Please be praying of us as the time gets closer and for Natalie to have not anxiety or fear! I will be keeping you all updated as the date for her surgery gets closer.
Carter is 10 years old and just start his last year of elementary school, 5th grade! How in the world is he already in 5th grade. I laugh sometimes thinking God gave Carter extra energy, because He knew Natalie would not have as much and thought we needed an equal balance in our home. The boy never stops and loves to be outside at all times, no matter what the weather holds.
Carter loves sports! We are about to start football, then we go into indoor soccer, followed by basketball and to finish the school year off, we have baseball. Carter has definitely excelled this year in each sport.
We have had a few set backs, he broke his wrist playing indoor soccer in the fall of 2015. I remember the orthopedic making a comment on our final visit after Carter broke his thumb, about how it was nice to meet us. I looked at him and said, oh we will see you again on day, it is just a matter of when. Carter is all boy, so I knew another broken bone was in his future at some point, just hoping a little longer, I guess.
He followed a broken wrist with a broken right index finger in the fall of 2016 playing basketball in our front yard. We thought it was just jammed, but when he still could to not bend it 3 days later, I figure we should go in. I know, I might be the worst mom ever...3 days before I took him in. In my defense, he did not even tell me it was hurting until 2 days later on a Sunday. So, if you are keeping score, that is a broken bone playing 3 out of 4 sports. I am praying hard not to hit that 4th sport, as we enter into football season. I am not sure I could handle that right now.
Carter has been blessed to attend church camp the past 2 summers and has definitely deepened his relationship with God. We have had some pretty serious talks over the past year, with him getting older. I continue to pray for his relationship to deepen and for God to surround him with godly friends at all times.
As for Family Fun Travels...
After Natalie had her fenestration closure and her oxygen levels went to the 90s, we decided it was time for her first airplane flight. Where else do you take a little girl on her first airplane ride? Disneyland of course!
We met Elsa, Anna and Olaf, along with a whole lot of other characters and princesses. Natalie was in heaven and Carter had a blast riding all the rides! We truly had a magical experience.
Natalie's curve went from 39 degrees in July of 2016 to 54 degrees this summer. She has grown a lot over the past year, so we had a feeling the time was coming. You know when the doctor tells your child that the nurse has something super neat to show her in the waiting area, that it means one thing... Surgery. We were not surprised by this, we were hoping it would be few more years off, but after much prayer, we realize now is actually a great time in her life and in ours.
She will be having her surgery done at Children's vs Scottish Rite, because of her heart. She will be homebound from school for about 6 weeks after the surgery and will have extensive restrictions for a while. So, we will be adjusting our lifestyle slightly after the surgery. There are a few things that Natalie will not be able to do for the next several months while her back heals and there are a few things, she might not be able to do again, but we will cross that bridge as we come to it. For instance, our Dr was shocked with even let her go snow skiing this past year, but that is something that we will not be able to do this year and are not quit sure about the future. God has taught us not to worry about the future, but to focus on the present. Now, this is not without a little kicking and screaming from me at times, but what else can you do in a situation like this, except fully trust in God and His plan for our lives and Natalie's.
To say I am a little nervous is an understatement. I am trying not to freak out and I keep telling myself God has this, so why do I need to worry. I can tell Natalie has moments where she is a bit nervous too. We are trying not to talk to much about it until it gets closer to time, unless she brings it up. She asked me if she could take a few of her stuff animals with her to Dallas. I told her like any mother would with a child about to have another surgery, "Yes, you take them all." That might have been a mistake, because she has already picked out the bag for them to fit in (there is like 30 by the way).
She did tell my mother the other night, that should would not have 3 zippers vs 1, one in the front and 2 in the back. She continues to blow me away with her positive outlook and for always being so brave! I just want to crawl under a rock and cry sometimes, but I know that will not solve anything.
Please be praying of us as the time gets closer and for Natalie to have not anxiety or fear! I will be keeping you all updated as the date for her surgery gets closer.
Carter is 10 years old and just start his last year of elementary school, 5th grade! How in the world is he already in 5th grade. I laugh sometimes thinking God gave Carter extra energy, because He knew Natalie would not have as much and thought we needed an equal balance in our home. The boy never stops and loves to be outside at all times, no matter what the weather holds.
Carter loves sports! We are about to start football, then we go into indoor soccer, followed by basketball and to finish the school year off, we have baseball. Carter has definitely excelled this year in each sport.
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| Carter kicking off |
We have had a few set backs, he broke his wrist playing indoor soccer in the fall of 2015. I remember the orthopedic making a comment on our final visit after Carter broke his thumb, about how it was nice to meet us. I looked at him and said, oh we will see you again on day, it is just a matter of when. Carter is all boy, so I knew another broken bone was in his future at some point, just hoping a little longer, I guess.
He followed a broken wrist with a broken right index finger in the fall of 2016 playing basketball in our front yard. We thought it was just jammed, but when he still could to not bend it 3 days later, I figure we should go in. I know, I might be the worst mom ever...3 days before I took him in. In my defense, he did not even tell me it was hurting until 2 days later on a Sunday. So, if you are keeping score, that is a broken bone playing 3 out of 4 sports. I am praying hard not to hit that 4th sport, as we enter into football season. I am not sure I could handle that right now.
Carter has been blessed to attend church camp the past 2 summers and has definitely deepened his relationship with God. We have had some pretty serious talks over the past year, with him getting older. I continue to pray for his relationship to deepen and for God to surround him with godly friends at all times.
As for Family Fun Travels...
After Natalie had her fenestration closure and her oxygen levels went to the 90s, we decided it was time for her first airplane flight. Where else do you take a little girl on her first airplane ride? Disneyland of course!
We met Elsa, Anna and Olaf, along with a whole lot of other characters and princesses. Natalie was in heaven and Carter had a blast riding all the rides! We truly had a magical experience.
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| Right before we got on the plane for the first time |
"Faith does not make things easy, it makes them possible"
Luke1:37
I will be updating more frequently over the next few weeks, as Natalie's surgery approaches.
