Off the Bench

Next week will be 6 months since Natalie had her back surgery. Crazy how time flies! 

I emailed her doctor today about seeing when she can get off certain restrictions, basically start participating in PE class and recess. She hates sitting on the bench and especially on Fridays, when they have “Free Friday” in PE. 

I received the offical letter, she is  off the bench🎉! 

Now, she will continue to have certain restrictions until the rods are removed, but for now, we will celebrate this victory! 

No trampolines, no contact sports and no monkey bars still. She told me she may not be able to remember how to do the monkey bars by them time the rods are removed, but hat it would be okay, because she got horrible blisters from doing them last year so much. Way to make a bad situation positive! 

There are a few things that will just wait and see how she does with as well. I did have her bend over, just so I could see and she knew. I think she is kind of scared to far, afraid it might hurt. 

Not that far, but she does have beautiful posture 

I told her PE teacher she was okay to participate. I think he might be more concerned then she is. I told them both that if something hurt or felt weird, just to stop doing it. Hopefully after a few weeks, things will get easier as we know what her new limitations will be. 

We did have a small celebration with hula hooping against her brother. She had to make sure, she was still good for hula hoop wars at schools. Big deal at Puckett Elementary! 

Thank you again for your continued prayers and support. Her next lengthening will be in June along with her annual cardiology appointment.  I love it when I can get both appointments scheduled around the same time. I feel like it is a small victory for me😜. Really, we are just blessed with amazing doctors and facilities that work with us and squeeze us in to make it work. I ❤️ Children’s Medical Center and Texas Scottish Rite Hospital  

Growing Before Our Eyes

Natalie had her first lengthening yesterday. She was so brave! 

We met with the Child Life Specialist and she walked Nat through everything and let her hear and see it. 

The Child Life Specialist came back in the room and talked Natalie through during the actual lengthening. Natalie did amazing! At the very end, she started crying a bit, she said it was kind of hurting some, but I really think it just felt funny. 

When then went to X-ray to make sure everything looked good and met with Dr Richards again. 

We were at the hospital maybe a little over an hour and didnthe following...

Checked in

Got Measurements done

Met with Child Life Specialist

Got a few more measurements for a study she is in

Had her back lengthened 

X-ray

Met with doctor again

I think that is pretty quick for all of that. We were super impressed with how smoothly everything went. 

I took a picture before the lengthening and after, I was crazy to see how much she grew! 

We will go back every 4 months for lengthening! There are going to be ongoing activities she will not be able to do while the rods are in her back, or ah should not do, such as monkey bars and trampolines. It is kind of hard to a clear answer when you are dealing with and orthopedist, but he said the concern would be the top screws coming loose or damaged. We will just take it easy for the next couple of years! 

Natalie is a little sore today, but nothing major. She did amazing and was so brave! 

Happy 2018

I know, it is almost the end of January, but we hope everyone’s 2018 is starting of amazing! 

With the end of January quickly approaching, it means Natalie will soon have her first lengthening with her MAGEC rods. 

MAGEC stands for MAGnetic Expansion Control System.  These rods are growing rods and will stay in Natalie until she is fully grown, which by the way I have learned, that most girls are fully grown two years after the start menstrating (random bit of knowledge there for you all). 

We will meet with a Child Life Specialist the first time before her lengthening. They will go over everything with Natalie and help her feel calm. I asked her the other day and she said she was fine, so I pray she stays that way. 

I have also heard from parents and patients in a support group I am in, that the lengthening does not hurt, but may feel kind of funny. A few have a little pain the following night or the next day, but nothing a little pain medicine can’t control. 

Natalie will lay face down on a table and our Dr will use a magnetic to find the rods. He will then use a machine, ERC (External Remote Controller) to activate the rods to rotate and lengthen them. All of this is down externally and she will be fully awake for everything. Larry and I have seen a few videos and it takes maybe 10 minutes. 

After the rods are lengthened, Nat will have a quick X-ray to make sure everything looks good and then we are done until her next lengthening in 3-4 months! We will continue with every 3-4 months until she is fully grown. 

I can tell it is time for her lengthening, because she says her back feels tight sometimes and uncomfortable.

I will be updating again soon.  Here are a few pictures below...

Above is a picture of what the rods look like.  The thicker part of the rod is the Actuator, it houses the internal magnet and lengthening portion of the rods.  The rods lengthen above and below the Actuator.

Above is the ERC used to lengthen the rods