… there is no finish line

 

And so we keep on keepin on….

 

I can hardly believe that the girls are 2 years old!! That’s right! It has been two full years since they made their debut.

It seems like they have been a part of my life, for my whole life. Yet, at the very same time it feels like just yesterday they arrived.

Things have been busy for us, and we have quite a bit coming up in terms of appointments, tests, scans, therapy and then Ashlyn’s big surgery before the end of the year (my guess would be late October/November).

 

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We finally have a set date for Ashlyns upcoming tests/scans. On September 26th she will be having a facial MRI, brain MRI and two other tests done. Something that I don’t speak about regularly and won’t go in to much detail with, is that because of her Caudal Regression she has damage to the nerves that work with her urinary and GI systems. The two tests they are performing will give us some answers about those systems and if they are working, and if so how much.

Once we get the results back from her MRI’s they will set a final date for Ashlyns surgery.

To catch you up on that, Ashlyn will be having throat surgery. The procedure is called an Epiglottopexy. This is not a common surgery and its mostly performed on patients whom have throat cancer. They have not mentioned to me what the final decision is, but last I heard they will be performing it slightly different than normal. Meaning, rather than performing the surgery through the mouth, they will possibly do it directly through an incision in her throat. Reason being is that A. She’s very small and it could be difficult to get great results through her mouth. B. Her obstruction is pretty severe and we really want to see a big difference with this procedure (in an attempt to avoid an even more scary surgery). Im sure they will update me on an exact plan after our results from this upcoming scan.

The reason we are having these scans (facial and brain MRIs) done before her surgery is because they may have to also remove a growth that Ash has in her nose. She was born with a small dermoid on the bridge of her nose, pretty typical with kiddos who have Goldenhar Syndrome. The growth has gotten larger and they are concerned with how deep it is growing. So depending on what they see in the scans, they will likely be removing that at the same time she has her throat surgery. So this is all to be determined, I will update as soon as we get some answers.

 

Knowing that she will be sedated a few more times throughout the year, and her surgery I just want to thank you all for your continued love and support.

 

On a personal note:

I have had some really hard moments recently that have shook me to my core. Realizations that I just have to accept. Like knowing that there will always be “something”. There is no one appointment or procedure that will magically send us on our happy way. There will always be another appointment. There will always be another test, another scan. There will always be another surgery (as confirmed by our doctors at our last appointment. Ashlyn will have many surgeries in her lifetime).

My goal is to just be “okay”. I have to stop myself from dreaming of the finish line with all of this. There is no finish line for this. I have to embrace and know that there will be a lot more challenges for us, for her. What I am trying to remember though, is that its okay. We will be okay. She will be okay. We don’t need to have a finish line. We need to just BE. Be happy. Be strong. Be grateful. Be willing to embrace this crazy, fun, unpredictable life. With the help of Ashlyn and Brielle’s sweet smiles, kind hearts, warm snuggles, silly personalities (and cute faces), we will surely be okay.

 

 

I would also just like to thank you all so much again for your love, prayers, help, letters, text, phone calls and donations. With YOUR help we have been able to pay off nearly ALL of our outstanding medical bills. We have just a little bit more to go and have started a trust fund for Ashlyn’s medical expenses, in hopes that we can better plan for future needs. All money raised is going in to Ashlyn’s trust and will go towards medical bills, therapies, equipment, medicine and anything she may require for her appointments hospital stays and surgeries.

If you’d like more information about our gofundme, you can check out the link here:

https://www.gofundme.com/35r7ntm4&rcid=13e15ac8778d11e6a928bc764e04c5a7

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Love y’all!

 

 

 

 

 

 

 

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One thought on “… there is no finish line

  1. ((((hugs))) love your outlook Just BE… So many friends, family and complete strangers are keeping her in their prayers and God is good and wise and will keep her protected throughout all her surgeries. Love you Jerm and those sweet pea nieces. Miss you tons and love you bunches
    Heather 💐

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