Hello WHS family,
As you all know Madison was the winner of the Halloween 2017 well she received a Foamnasium set two weeks ago.
We would like to say thanks to Anitra, Elsa and all who purchase the hats from the fundraiser.
Madison is very exited about her prize and it’s a great addition to her therapy room.
Brief update on Madison:
Our Sweet Super have been fairly healthy so far this winter and had lots of fun during the holidays despite one mild seizure on Xmas day that cause her to stop taking her bottle orally, but since she has a G-tube she still gets her daily nourishment, She is getting extra feeding therapy but only time will tell if she will re-gain her oral feeding functions.
Last week she got her hearing aids for her right ear her reaction was priceless once it was turn on she turn the right to look at the nurse as they started to say “ba-ba-ba-ba” in a low pitch tone. She keeps it on but her Ear anatomy just don’t keep them on so we will have to use a Pilot Cap so it stays in place.
Pulmonology report is that Madison’s sleep apnea has been corrected drastically since our last two appointments so as of today she no longer has to take any of the sinus medication and nose spray for a month and we will repeat her sleep study to see if the results remains the same without the bed time medications.
Nephrology report: Madison’s labs remains stable for the last 15 months and at this point we will see the Nephrology team in four months but no labs will be required unless she has a UTI. Since Madison’s oral aversion the Renal Dietitian adjusted her diet since she is now 100% G-Tube feed to 50% Nourish and 50% RenaStart formula and we will repeat labs in 6 month unless this change don’t agree with her they also reduce her calories intake because she still continues to gain weight and is since she in not mobile enough to burn those extra calories.
This are the most resent appointments updates on Madison we have been keeping her away from public places and taking extra measures to somewhat prevent her from catching any viral infection specially the flu she have been taking a daily steroids to help her lungs to be strong in the event that she gets sick with any pulmonary infection.
Wishing all our extended WHS family warms thoughts from
Little Madison, Brandon & Kenia
If you enjoyed this article, please consider sharing it!
Wonderful update! SO great to see Madison using the new equipment. She looks so strong, Kenia. The generosity of so many over many years made the gift possible – so thank you WHS community for your continual support! Very sorry to hear the her seizure had a negative impact on feeding. For us, a seizure and intubation in the seizure’s aftermath had a similar effect. We too found tremendous comfort in the G-tube. I hope that one day, Elsa will be able to return to eating in some way, shape or form, but only time will tell. Loved your hearing aid story!! Elsa had a similar moment. We have tried everything to get her aids to stay in. Wig tape, the whole nine yards. The safety clip we use to keep it attached to her clothes has a tightening slider that helps a bit. (We use the Mouse Printed BTE Hearing Aids Clip, sold on Amazon). Thanks again for the awesome post. Hugs to Madison and all of you!