Sunday, December 9, 2012

positive vibes are working!!!

hey everyone,
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:

And in case you are on Facebook and have not joined Leah's support pages, you can find them here:
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

Peace,
Frani

Friday, December 7, 2012

December 7, 2012


Ok, so I think I got at least the last month worth of updates up on here. Sorry there isn't more ;)

Here's what been going on this week:

On Sunday we brought her to the ER, we'd noticed for the past 3 days or so, she was very tachycardic, meaning her heart rate when she was awake was very high, higher than normal for her, which could be indicating that she has an infection of some sort. So, we took her to the ER on Sunday night at 11pm, got admitted at 5:30 am, finally! The PICU at Santa Monica hospital was closed because they didn't have any sick kids, so they had to get everyone on call to come in and open it.
Turned out that she had a UTI, and it was a type of organism that is resistant to most antibiotics, except IV antibiotics, so they had to keep her admitted in the PICU.
Since sh'es been in, they've been making some changes to her blood pressure meds, because her blood pressure was too low. Then they also noticed that she was over ventilated on the hospital vent, so they lowered her rate to 18 breaths per minute from 28, and she was breathing some on her own, which is great news! They also noticed that when the vent got disconnected she was taking small fast breaths, which may be because they have been weaning her down off of some of her seizure meds and is not as sedated anymore.
The best part though, was that she has started to cough again, something she hasn't done in many months because of how much sedation shes had. Coughing is a good thing because it means she is trying to clear her lungs on her own and she also has enough energy to cough, which is really hard when you have mito. But, shes been gagging and coughing more, which is a huge improvement, and we are so happy about it.

Leah was not the only patient in the hospital this week, Zev also had to get surgery on Wednesday as well. He had been having a lot of pain in his testicular area recently and a urologist took a look and noticed that he had a growth on there that was causing it. It wasn't cancerous, but there was a chance that leaving it there could cause a lot more pain than Zev could bear and he didn't want that, so they were removed in surgery. We decided it would be the best thing to do, since we cant have anymore kids anyway, as mito is genetic too. Surgery went really well, Zev was in tears when they were putting the IVs in, not because it was hurting,  but because he thought of all the procedures Leah has been through and how many times she's had to go to surgery and be int he hospital and he felt very sad. I had gone to eat food while they were prepping him, so he dint think he would see me before surgery but i got back just in time to come in and see him get wheeled into the OR. He was happy and still crying a bit, because he thought he wouldn't see me before and wanted to give me a kiss, in case something bad happened, but I came in and got to see him and give him a kiss good luck. And that's when he got the Valium... haha, he was giggling and laughing and saying that everything was slowing down a lot. So, at least he didn't go into surgery while he was freaking out. He was able to go home about an hour after the procedure, but he wanted to go to the hospital and see Leah. I  got him a wheelchair there (the perks of having your child in the hospital) and wheeled him up and the first thing he did was get up (in pain) and hobble over to her side to give her kisses. He said that the pain was bearable ubt that he couldnt bear not to be with his princess, he is my hero :) Or course,he laid on the bed and slept for a few hours after that. We got my mom to spend the night with Leah in the hospital so that i could accompany Zev home for the night and he's been recovering more each day, but is still in pain.

So, we were supposed to go home today, but she had a little seizure again today, which we think could be from this RSV shot that she got a couple days ago. It caused a low grade fever for her, but they weren't worried too much about it, but she is also dealing with the infection, plus now we found out she has C-dif, which is a bacteria that you get from too many antibiotics,and we are treating it by giving her more antibiotics. The neurologist said that the seizure is probably from everything she's been going through and that when shes sick like this, and has shots, it can lower her seizure threshold, so she's not worried for now, as long as it was just that little one and not something longer. Her blood pressure has also bee kinda low so they are trying to stabilize that before she goes home too. So, we'll probably go home on Monday if all goes well over the weekend.

thanks to everyone who has been messaging us, with concern about Leah, we really appreciate how much you care about her. We are sorry we couldn't update sooner but we had a lot going on and barely had time to take naps. But thank you once again for all your support, we love your global family and will keep you all updated over the weekend
Lots of love
Frani