Just wanted to post a quick update about some new stuff that happened today.
They removed the foley catheter last night because they noticed that she was still retaining urine in her bladder, and they thought that maybe the catheter was kinked and she has been peeing on her own into her diaper!! This is another miracle that we've seen since weaning off the Topamax. The doctors weren't sure if the urine retention issue started because of the meds or because of the possible brain damage she may have from the seizures.
I am so happy to say that she is not retaining anymore urine, and she has not needed to be cathed for the whole day! This isn't the only difference we've seen since she's been coming off the dosage, she's also been moving more, not in a bad way, but in the way that babies should move. She's wiggling her fingers and responding more to her toys. We got her a really cool toy for Hanukkah, which is this little stuffed ball that has different textures on it and when you tap it lightly, you hear a baby giggling; she really loves hearing the baby laugh and I can see her starting to try to smile more.
I feel so happy to see all these positive changes in her, even though she;s in the hospital again and has the UTI and now the C-dif, I know that she'll get over them and they are just a little bump in the road, but these past few days, with the coughing and the peeing and just the overall state that she's been in, has been very very exciting. They are miracles, whether they are Hannukah or Christmas miracles, I don't really care, they are still miracles and they are letting us know that she is still fighting to stay alive. That she wants to live, and be loved; and she is loved by us and also by so many souls in this world, that I'm sure she can feel it.
We will continue to wean her off the Topamax for one more week and then we are going to stay at that dose until the first week of next month, when we see neuro again and hopefully we can start to taper down the Clobazam, since that one is also sedating.
I can't say how much it means to me to have been able to share our lives with you all. All of the support and love and prayers we get everyday is just so moving and inspiring and it really helps to know that there is a large community of people who genuinely cares about our well being. I think everyone should have that, and should be able to receive all that love and support as well. Whenever I get sad about what Leah is going through, I connect to the pages of other kids like Leah who are also struggling, and living, and it gives me hope to see them striving. Sometimes they get sick too, and I let them know that I'm praying for them too. This community, by sharing your prayers and kindness with us, has inspired me to do the same for others, and for that I can never say how grateful I am. Since so many of you have already opened your hearts to Leah's story, I wanted to introduce you to a group of kids that are also fighting and striving to live with a life threatening disease. If you can, please take the time to visit their pages and learn about their stories and let the families know you're thinking of them.
Here's the list:
- Isabelle is 7 1/2 months old - She has a rare Mitochondrial Disease. At just over 8 pounds, she continues to struggle. https://www.facebook.com/HelpIsabelleGrow
- Baby Kharlee Rene is a preemie who was born at 23 weeks and continues to struggle in the NICU, this is a link to her prayer group. https://www.facebook.com/groups/126262634196304/
- Stefan Livingston, a baby with mitochondrial disease https://www.facebook.com/pages/Stefan-Livingston/502470689780078?ref=stream
- Cards for Connor; Connor is a 4 yr old who has rare Form of CMD https://www.facebook.com/CardsForConnor?ref=stream
- Autumn Kenney has mitochondrial disease, Leigh's syndrome and complex IV deficiency https://www.facebook.com/pages/Autumn-Kenney/124249064277984
- Ali is 5 years old and struggles with Batten's disease https://www.facebook.com/pages/Alis-Angels/179198875524105?ref=stream
- Dominic is a 9 year old boy with ALS (Lou Gerig's disease) https://www.facebook.com/DominicTheDominatorCumo?ref=stream
- Power Boy is fights ALD (Adrenoleukodystrophy) https://www.facebook.com/pages/Power-Boy-ALD-Awareness/250983988272890?ref=stream
And in case you are on Facebook and have not joined Leah's support pages, you can find them here:
- Main page/Family updates: https://www.facebook.com/pages/May-the-Force-be-with-the-Princess-LEAH/166607313399901
- Papers of Love for Leah, a page with printing materials you can print and take to fundraisers, conventions and events to share her story and also take pics of yourself or your community with the flyers.https://www.facebook.com/P.O.L.F.L?ref=stream
- Leia's Journey for Princess Leah, a page where a Princess Leia doll travels across the globe to all her supporters and takes pictures of every city/town/country she goes to, to raise awareness about Mitochondrial diease and Leah's story https://www.facebook.com/leiasjourney?ref=stream
Please share the support you've all given us with these children and if you know of any other kids and would like to share links to their support pages, please leave it in the comments below
Happy Hanukkah and may you all be blessed with miracles this season as well