IV and Clowns

IV is in😳.  She was not a huge fan, but Witch Puppy got one too, so that made it all better. 

The hospital clowns came to visit as well! They are so great with kids and had her laughing. 

We have signed the concent forms and are now waiting to see our Dr. We have also enrolled her in a study at Scottish Rite for kids with early onset scoliosis. 

It has been a crazy morning, with only tears during the part of the IV process. She is all smiles still! She is on brave, tough little girl! 

Heading to the Hospital

We all woke up with a sense of peace and comfort. Thank you all for covering our family in prayers! We truly believe in the Power of Prayer and have seen it work in our lives🙏. 

I have recently been listening to a song by Caleb and Kelsey, Oceans/You make me Brave! It is a combination of two songs and the song has been powerful to me as we have been preparing for today. We know God has perfect timing. Natalie also knows that when can not been in the operating room with her, that God will be standing right beside her, comforting her and guiding the surgeons hands. 

Thank you all for the prayers! We think the surgery will be around 4-6 hours. The first few hours are getting her sedated and prepared, the surgeons part is only scheduled for 2 hours and then whatever time it takes to close her up and get her to ICU. 

Shh! Do not tell

We spent the last two weekends doing all the fun things that we know Natalie will not be able to do after surgery. 

I am not sure if these are things she will ever get to do again or if we will just have to wait and see. I am sure our Orthopedist would prefer us not doing these and would probably freak if he knew we took her to a trampoline party and roller skating the weekend before surgery. I was kind of scared she might break something, but she had a blast! It was worth it! 

I did cry a little bit as she was skating around the roller rink on Saturday, dancing and smiling. My heart hurts for things she loves and will not be able to do for a while or a few years. 

We have just told Natalie, she is going to have to take it easy for this year, so she can heal completely. After that, we will just have to see what she can do and what our dr will let her do. We have always known there are things out there she should not do bc of her heart, but we have always tried to let her try everything. Back surgery, may put a small damper on some of the things she likes, but we will cross that bridge as we come up to. 

Natalie had a great weekend with friends and family. She is doing great today as we load the car and dropped her brother off at school. 

Please continue to pray for peace and comfort today and tonight. Her surgery is scheduled for noon tomorrow, Tuesday the 26th.

This is going to be interesting 😳

I have to use the above wipes to disinfect Natalie’s skin before surgery. You use 6 different wipes each time...that is a lot of wipes! 

I had to wipe her down tonight and again tomorrow night. Oh do not worry, I get to follow it all up with one last time, the morning of surgery. 

We also took off all her finger nail polish and had to cut her ankle bracelets she made over a year ago. Truthfully, it was probably time for the ankle bracelets to come off, but I still felt bad. 

We had a bit of a rough weekend, with tears on and off. I am pretty sure the morning of surgery is going to be hard. Please conintue to pray for us we draw closer to surgery. 

Last Day of School for 6 weeks

I went to Natalie's class yesterday aboutb15 minutes before school was out. I wanted to make sure she got everything she would need for homeschool for the next 6 weeks while she recovers. I walked in to her whole class sitting on the floor telling her how much they will miss her and then they all gave her hugs...yep, I had to fight back the tears on that one. There were a few of her sweet friends that cited. 

She is in the middle of that huddle! 

We finished up a few errands after school yesterday. I did buy 10 lunchablea for Carter. I was kind of embarrassed to check out, but oh well. He should be good to go for the next few weeks while I am gone. 

We finished the night with a little volleyball action for Natalie and dinner with friends. She has actually improved in volleyball, since last week. I would have loved to see her finish the season, because she is so close to making it over the net. 

I did have to answer the question last night, why she has to have surgery again. She is also afraid that she will miss out on fun things with her friends. She was telling me how she was afraid things would be different when she comes back, because there are things she will not be able to do for a while. Poor thing, I can only reassure her and continue to tell her how proud of her I am. It may be a long weekend for us.

On another note, I have found an app that I downloaded and can use my phone to update the blog. I figured in all the years I did not update, that surely they have come out with a way now. They have! So, this is my first post on phone. I am hoping this works out for me, because this would make it so much easier for me to keep everyone updated. 

Thank you all for the prayers! We can definitely feel them❤️

Pre Opt Appointment

"To pray is to let go and let God Take over"

Philippians 4:6-7

We have had a busy few weeks!  I met with the Amarillo ISD Homeschool Department and got Natalie all ready to go for after surgery.  I was able to meet the two teachers, that will be coming to our home to work with her until she is released to go back to school.  I feel so blessed to be apart of an amazing elementary school and school system.  Everyone worked so quickly getting Natalie all set up and explaining everything to me.  I feel relieved to have that off my plate and knowing that it is all in place. 

Football season is upon us!  Carter started football games this past weekend.  He and his team did amazing and won both their games.  Carter did come home from school last week, thinking he broke his wrist in PE.  I thought, this is exactly what I need right now...ugh.

We are lucky though, it was only a bad sprain.  He has a little brace he has been wearing and has told me it is feeling much better.  Please pray for extra protection for him while I am gone.  

Natalie also had her first volleyball games this past weekend as well.  I did not think anything could be as bad as watching tball, but I may be wrong.  Second grade volleyball is pretty brutal.  First, most of them do not know how to play, because this is their first year, which is understandable.  Second, most can not hit it over the net, so when someone does from either team, everyone cheers.  I do have to say, they have all improved in just one weekend.  Natalie only gets to play one more weekend and then, she is done.  She really wanted to play volleyball this year so, we decided to let her play until surgery time.

Natalie's surgery is less than a week away!  

How am I doing? Honestly, I have my moments.  Yes, I am an emotionally basket case most days, trying to not lose it.  I know she is going to do amazing, but I hate handing my child over to doctors that plan on cutting into her.  This will be her 11th surgery and I know this will not be her last either.  Handing my child over, is a true test of my Faith each time.  I have an ongoing battle inside my head daily; fear vs letting God take over and knowing He is in control of all of this.  The struggle is real...

I am apologizing up front if you run into me in the next few days or in these past few days and I have seemed not with it or in another place.  I feel like I am going through the motions right now of my daily life and I am so overwhelmed at times.  

Larry, Natalie and I took the 6:15am flight to Dallas on Monday.  If you are doing the math in your head right now, I got up around 4:15am. There is something so wrong about that and for all you business men and women out there, that do this on a weekly or even daily basis, I am sorry.  I feel for you and I now pray for you daily, for strength and sleep.

We started our morning off at Scottish Rite with some X-rays.  Our doctor wanted some clear pictures for surgery.  The had to twist Natalie for a few of them.  Weird, but they said they need to see how bendable her spine was.  

Off to we went to Children's Medical Center's Pre Opt Clinic, where we had an exam and lab work done. I am embraced to say this, but I missed the Heart Clinic on Monday, where everything is done right there and they know us so well.  Natalie was so brave about giving blood and being examined.  

We got home Monday night around 5:45pm, so it was a long day.  Little miss, decided to wait until the car ride home from the airport to finally take a nap.  Isn't that how it always goes?

Carter woke up Tuesday morning, trying to say he was not feeling good so he could stay home.  I think me being gone for a few weeks, is getting to him as well.  I promised him, I would pick up him up early one day from school and have some one on one time together.  Sorry, for any of his teachers reading this.

I got a call from the school on Wednesday that Natalie was not feeling good.  I went up there and she started crying, saying her head was killing her.  I decided just to bring her home with me for some one on one time this afternoon.  As soon as, we got in the car, the below picture says it all!  Sorry, Ms. Robertson for her missing the rest of the day.  

Her anxiety is in full effect this week.  She has asked us every night, why she has to have surgery.  If that does not break your heart, I am not sure what will. I hate this for her in so many ways.  I know she needs this and will do amazing, but I hate she has to have another surgery right now and one that will keep her home from school for so long and change her life some.  I hate even more that I know this is not that last surgery she will ever have!  Some day, she will need these rods removed and her spine fused and she will need another heart surgery at some point in her life. I have always told my kids to not sue the word "hate", because I feel it is a strong and powerful word, but that is how I feel about this whole thing.  

I have spend the week cleaning house, buying groceries for Carter and Larry while I am gone and packing clothes for everyone.  I am sorry to say, but my son may be eating lunchables for the next few weeks.  I promise he will eat some fruit and veggies at home, hopefully.  We are just going to try and make it through, doing whatever we can do...so no judgement, please. 

If you all do not mind, please be praying for everything to fall into place this week, as we prepare to leave.  Please pray for peace and comfort for all of us.  Thank you all!  I will be updating more and more in the next couple of days.  

Long time...We are back

"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.

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.

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.

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.