We aren’t leaving for Boston tomorrow.

Less than 48 hours after the Mad Hatter Benefit, I noticed a lump in Poppy’s neck. I took her in to have it examined and her pediatrician sent us to Randall’s for some imaging – from there she was referred to pediatric surgery- and now we are making arrangements with her ENT for further scans including possible CT and MRI. The doctors do not know what the mass is – but can clearly see it on ultrasound. They suspected a thyroglossal duct cyst but say it is not in the typical location. Pediatric surgery said that it seems “fishy” and it needs to come out.

On top of the new medical issue, Poppy’s respiratory illness has not resolved enough for her to be safely put under anesthesia.

And lastly, OHP has denied the third appeal and is refusing to pay any portion of the surgery. It was originally quoted to me that this two-part surgery would cost $60k – it was a gross understatement as I have found out that that figure was only for one part of the two-part surgery – making the surgery well over $100k. Boston is working miracles for us and trying everything in their power to get the remainder of the fees covered and I am so blessed to have them working so hard to get Poppy what she deserves. They have even paid the cancellation fees for our flights. BCH has saved August 15 as a secondary surgery date in hopes that Poppy will be healed and well enough to travel then.

It just wasn’t the right time. Please keep Poppy in your prayers and thoughts as we navigate this setback. As her mama, I am absolutely broken hearted and scared – but seeing how my community has come together for her places a gentle peace within.

Please forgive me for taking so much time to make this statement. I have been focusing on holding, kissing, and embracing every moment with my children – it is the only thing that gets me through all of the tough stuff.





One response to “A little detour…”

  1. k Avatar

    I just found your blog. We have some things in common. I’m a doula, though not practicing right now due to the fact that in 27 months, I adopted kids, one at a time. One has aperts. I’ve not had a chance to read all your blog, so I don’t know your insurance woes, but have you been to a Shriner’s Hospital? They did my baby’s hand surgeries and there is no cost to families. The surgeons are top-notch, too. I also understand that place of being so dried up inside, having no relief, no breaks, no adult time, and all that you described in your previous post. We aren’t enough. We need love and support for ourselves and our kids. Single motherhood with children with special needs is an entirely different job than single motherhood of children without special needs. The medical decisions we have to make, the time it takes to sort out all the medical and therapy stuff, seems to take most of life. I enjoyed reading your birth story, that you could deliver naturally, and the process you went through afterward is also perfectly natural. I hope you find your way to my blog and see my aperts girl. She shares a lot of the same facial expressions as you Poppy, mostly that impy little smile so full of joy.


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