Gwendolyn Update and a Special Visitor

Thank you all so much for your thoughtfulness and concern for Gwendolyn this week. Gwendolyn is status quo and we are still very worried…but very hopeful. We are seeing improvements in some areas, but are still waiting in others. There is still uncertainty about what exactly is going on, but Gwendolyn tested positive for pseudomonas and we are treating for them because she is having symptoms. Basically, my understanding is we all have these in our system, but it is when they overgrow that there can be a problem. There is still a lot of unknown right now and that always makes us feel off-kilter. The truth is Gwendolyn has been off for months and these last few weeks have been way off, so we are hoping, hoping, and hoping some more that these pseudomonas were the underlying issue all along — time will tell. We started a new nebulizing antibiotic in addition to the other and are hoping this combo will kick the bad guys to the curb. We are very moment by moment right now — the morning may be great followed by an afternoon scare. So we are learning to just go with the flow, not think too far ahead again, and savor the sparkle when we see it (and it is returning for periods!).

And yesterday we had a very special visitor come to our house who made Gwendolyn sparkle big time –> Little Star! Gwendolyn had a tough afternoon and I wasn’t sure how the visit was going to go. When I told her Little Star was outside of our house her eyes lit up and she started tapping her fingers so fast, which made my heart immediately fill. Little Star is seriously amazing (as is Diane, LS’s owner). They arrived with a “Get Well” balloon tied to Little Star’s neck and he was so proud of it and knew it was for Gwendolyn. He was so sweet, gave her nuzzles, patiently visited on our front porch, and excitedly and gently took carrots from Gwendolyn’s little hands. At one point (during talk of the new rooster at the stable) Little Star let out a very distinctive sound while looking at Gwendolyn the whole time. (I think that rooster may be a bully and he wanted G to know all about his woes.) Diane, her daughter, Hailey, and I chuckled to see the pedestrians on the street look around at where that horse sound was coming from — it’s not every day you see a horse in the front yard of someone’s house!

Thank you to everyone who has reached out to check in and sent notes of encouragement. We are not at our usual speed right now and apologize for not returning emails and phone calls, but we appreciate them — a lot. We are also really grateful for the SMA families who have gone out of their way to answer questions about their experiences with pseudomonas. Thank you so much for helping us troubleshoot, guiding us through what to expect, what to ask, and what to do. Step by step, day by day, we are heading in a positive direction and that is where we plan to keep heading!!!

About Victoria

Mom fighting to END SMA, the #1 genetic killer of young children.

Comments

  1. Love flowing to you all. You have been on my mind constantly. Moment by moment my friends. It is the only way to go.

  2. I’ve only recently learned about Gwendolyn. I hope that she recovers quickly. She is such a beautiful little girl. You are all in my thoughts.

  3. Thanks for posting. I have been wondering how the little princess is. She is a tough cookie with two of the best cheerleaders in her corner known as Mommy & Daddy.

  4. Little Star is now MY new hero! We sit a bit frustrated trying to decide what would be the perfect surprise for Miss G. . . . I can’t think of a better thing than a personal visit from Little Star.

    We have in our thoughts and prayers daily and your precious girl is in mayb conversations through the day. I can’t wait to hear that Gwendolyn is back to her happy tapping self.

    Huge Hugs from all of us!!!

    the Davidson Crew!

  5. What an amazing gift!! My heart and eyes are full. We know the healing that horses hold in their souls and spirits….I send, as always, tons and tons of love, prayers, and constant positive thoughts and energy. Our warrior princess WILL beat back this latest enemy, and with all the grace and beauty she always does. We all are with you every day in spirit, uplifting and strengthening….

  6. I have been thinking of you all non-stop. I am relieved to see a new post and hopeful that the new nebs will do the trick. Sending strength and healing thoughts all as I’m sure you are all exhausted, mentally and physically. Hugs and Kisses!

  7. linda miller says:

    Hello from NC

    Always read your notes about your Miss G and pray for her everyday.
    Your strength and positive attitude have brought her so, so far and will continue to do so.
    Let’s just hope these antibiotics kick this infection out of her little body and she heals from this infection.
    She’s such a precious little girl.

    Linda Miller
    Charlotte NC

  8. So glad to hear that Gwendolyn has that sparkle back sometimes. Can’t wait to hear about more of her adventures!! : )

  9. Gwendolyn must have been over-the-moon with her very special visit. As a long long time horse owner I know how special and devoted they can be :)

    We are keeping Gwendolyn, and you all in our prayers. Peace be with you.

    –Mari

  10. Jennifer Calafiore says:

    How wonderful for LS to come and lift Gwendolyn’s spirits. Thinking of you guys constantly. Love and Hugs!

  11. Thinking of all of you. Feel better soon Miss Gwendolyn.

  12. I have said that one of the best things about Little Bird and her Autism is that she doesn’t know she’s different. I truly think that one of the best things about Gwendolyn is that she really really really knows just how loved she is by everyone and every thing!!

  13. So happy to hear that Gwendolyn was able to spend a beautiful afternoon with Little Star. May your days continued to be filled with lots of moments of sparkle.

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