Our Friend

April 14, 2008 at 5:51 pm 1 comment

This is Ella! 

Isn’t she  cute?  All my girls love Ella, but she has a special bond with Polly.  Take a minute and read about Ella.  She could use all of our prayers tomorrow, Tuesday, April 15, at Noon. 

Kirk, Ella’s Dad, wrote,

As you may or may not know, Ella has a giant nevus (giant hairy mole) on the left front quadrant of her head.  Medical professionals are telling us that this type of nevus generally carries a 6-10% of risk of melanoma.  Coupled with this risk, and the concern that recognizing change of the nevus a melanoma through self-diagnosis will be challenging later in life for Ella due to the combination of location in her hair and her having Down syndrome, Bonnie and myself have opted for removal of the nevus.  We have also been told that Ella’s current age is the optimal time to have this surgery done as those that are older typically have more scarring and healing issues.

On April 15th, six days after turning two, Ella is having two skin expanders placed in her head to promote growth of additional skin adjacent to her giant nevus (giant hairy mole) on her head.  One will be in the front of her head partially underneath her forehead and partially under her hair.  The other will be in the back of her head.  This expanders will be injected periodically (every 4-7 days) with saline (likely by me) until July 8th when she will have a second surgery with an overnight stay to remove the expanders and replace the skin having the nevus with the newly grown skin above the expanders.  We are told that the expanders will cause minimal discomfort for Ella, but will likely be hard for others to see (especially her parents).  

We are asking that our friends and family pray that:

  1. The surgery on the 15th goes well and she can be released from the hospital (Children’s Memorial in Chicago) on the 16th;
  2. No serious infections occur through July 8th;
  3. Ella remains healthy during this time so the expansion can be consistently done as expansion cannot be done if Ella is ill;
  4. People still respond positively to Ella during this time despite her appearance;
  5. A minimal amount of strangers make to Bonnie and myself inappropriate questions or comments;
  6. Ella is healthy for the removal surgery in July 8th;
  7. The surgery leaves minimal scarring on Ella, both physically and emotionally;
  8. The surgery truly reduces the risk of melanoma to a negligible amount;
  9. Melanoma is not present in the removed skin;
  10. Ella continues to be able to overcome her developmental disabilities during this process and after; and
  11. Bonnie and myself feel peace in this matter.

Ella is certainly a blessing to Bonnie and me, and it has been a difficult decision for us to make, one that certainly makes our hearts ache.  Bonnie and I have made it through many challenges in the last couple of years, in no small part by the prayers of our family and friends.  We would like to thank you for these prayers in the past and going forward.

God bless,

Kirk and Bonnie

If you’d like to find out more about Ella and her parents, you can read about them here.

I will update about her after her surgery tomorrow.  Thanks for your prayers for our sweet friend.

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Entry filed under: Down syndrome, Friends, Parenting.

Out of Surgery

1 Comment Add your own

  • 1. theramblinghousewife  |  April 14, 2008 at 9:19 pm

    Oh, what a precious girl! I’ll keep her in my thoughts and prayers!

    Reply

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