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

Saturday, August 18, 2012

18 months!

Hi everybody!
I can't believe my (not so little anymore) baby turned 18 months yesterday! It blows my mind because I still remember when they talked to us about her last year in May and said she may not make it to her 1st birthday and here she is, still going, still hanging in there.
The past 3 months have been crazy, as some of you who follow our facebook page may know, she's been in and out of the hospital several times since the beginning of June. She was just discharged from another stay in the hospital this past Wednesday. She was there from 8/2-/15, this time she was de-satting and turning blue again on Zev and Jill while I was at work. I got a call from Zev first saying they were calling 911 because of her respiratory distress. I got to the ER before they did and it was crazy of course. So many people were talking, it was complete chaos, I think I was asked by 4 different people what her vent settings were. But eventually the commotion died down, they took some X-rays and  found that her top lobes of her lungs were  collapsed. They also did urine and blood tests, and found that she had 3 infections, one was tracheitis (common infection for kids with trachs), another UTI (makes sense since we've been cathing her), and a viral infection of the common cold (not sure where she got that from). Of course, her movements get worse when she's infected with something, but with 3, she was pretty miserable for the first week there. Also, the first 2 could be treated with anti-biotics, but the cold we'd just have to wait it out, since they don't have meds that fight off virus's (sp?).
Of course, something always has to go wrong, while we were there they accidentally gave her one of her medications with glucose again, even though on her chart glucose is listed as an allergy because of her ketogenic diet. But they only saw some small movements and were able to control them, but every time we go to the hospital, they have to screw something up. This is also the 3rd admission that they've done this, so you would assume that Pharmacy would figure it out, but no; they did it again.
Neurology ended up going up a bit on her Topamax and Clonopin, after we had gotten her to be weaned off of some of it, but they said it would only be for a bit while she's sick so that she is more comfortable and it actually has helped quite a bit. I would like to get her back to her weaning schedule though. They also did a few more EEGs and found that she was having more of the infantile spasms than before, which they attributed to the infections.
We were going to go home on Monday the 13th but she starting having more de-sats and they didn't feel it was safe yet. They even went so far as to imply to Zev (without me there) that she was on her last legs and we should prepare for the worst. It was a shock to Zev and of course, when someone tells you that you believe them. But after we spoke on the phone I told him that I thought she just looked that way to them because she was sick with 3 different things. I don't feel like she;s ready to let go just yet, and especially now that she's been home, she's been very stable and comfortable here, with her heartrate as low as 98 bpm wen asleep. We know our daughter and we know when she's happy and when she's mad and when she's sad, the doctors only see her when she's sick and always assume the worst possible outcome. But I have faith in her and I think when that time does come, if ever, she will let us know in her own way. And we'll cross that bridge when we get there. But I don't feel like it's time yet. For now, we're going to continue loving her as much as we can, and showing her that she is so loved by so many and that she has plenty to live for, even if it's just for the caresses and songs we sing to her.
I'm super nervous/excited to go the Star Wars Celebration VI in a couple of weeks. I'm nervous because our nursing agency hasn't found nurses for that weekend yet and my mom won't be available to help out because she's going to visit my sister in Connecticut. But, hopefully we'll get people and if not, he can always take her back tot he hospital, which would suck but is the last choice.
I'm really excited to meet all of Leah's supporters there, it's going to be great to be able to tell them in person how much of a difference they've made in all our lives. I'll also be going to Dragon Con in Atlanta the following weekend for work, where I'll get to meet even more of them there as well. It should be really fun, though I still will miss my babies (Zev included).

On one final note, to wrap this up, we cut Leah's bangs today and she looks absolutely adorable!
Check it out!
and here's one from right before that:



I'll post some more stuff tomorrow.
Peace!
Frani

Tuesday, July 24, 2012

Drama at the PICU

Hey all,
So, we went back home last Wednesday (the 18th) with her cough assist and vest and all that, and we had to bring her back in on Saturday morning :(
She had been doing ok, but on Saturday morning we noticed that her O2 saturation was staying low, at around 87-89, and even with suctioning her, she wasn't coming back up to 100, and she was sleeping, so it wasn't like she was holding her breath or anything. We ended up having to bag her manually to bring her oxygen levels back up and also pump her oxygen up to 15 liters, so we decided to call 911, since she wasn't maintaining her oxygen high enough. The fire department got there in no time, thank goodness, they are so awesome. But we had to bag her again in the ambulance as well, because she was de-satting again. Unfortunately, it was early in the morning and neither of us had eaten breakfast, so I ended up throwing up in the ambulance (the movement of it didn't help my stomach, in addition to the nerves and hunger).
Once we got to the ER, it was a mad house, there were so many people in her room, and it was so loud, noone could communicate properly. I was asked by 4 different people what her vent settings were. Then, after they moved her from the gurney, they were supposed to bag her until her vent was set up and they didn't notice that the bag was not connected to her trach, so she de-satted again to around 20, this time, but were able to bring her back up again. I was so weak from the vomiting that they had me lie down in a bed as well. Luckily, they brought her up to the PICU relatively quickly, we were only in the ER for about 3-4 hours.
Once she was in in the PICU, they did all the blood work and cultures to see if it could be an infection, and nothing came back positive. So, they just observed her over the weekend.
We were supposed to go home yesterday but our home health agency didn't have anyone available to come out and re-admit her at home, so we we decided we would leave early this morning. However, we found out yesterday, just before she got one more dose of it, that her Flagyl (antibiotic for C-Diff) had been mixed with  Dextrose (sugar/carbs), so of course she's been getting about 8 doses of that since she's been here and it seems like it may have caused her to have more seizure-like movements. Right now, we decided not to go home today and monitor her on an EEG so we can see if the movements are seizures or not. She sort of bites her tongue and holds her breath too, so we just don't want her to wear herself out or turn blue because of these. Of course, we filed another incident report with the hospital, since the same happened recently at the Santa Monica hospital where they gave her a med mixed with sugar and it messed her up.
I also had to deal with a very unpleasant doctor here in the PICU who in morning rounds said to me "So, it seems like she's been here at the hospital more often recently, like she's had to come back more frequently than before when she was at home for longer. I mean, it seems like she's getting worse, right? instead of getting better, since she's had to come back to the hospital more often now? Is that true?" of course, my response was "yeah, thanks for pointing that out". The way he said it though, was so rude and tactless, and he may have not meant it but this is the same doctor who, when she had the big seizure last year, told us "well, I don't think she's getting better, every time I see her she's doing worse, I don't think she's going to make it"
So, yeah, I was really mad, I mean what right does this jerk have to say that to me? Doesn't he realize that we know she has a degenerative disease, that we don't need to hear his negative BS? Since I'm tired of getting mad and not saying anything, I just asked him straight out, when he came into our room a few minutes later, what he meant by that comment, what did he imply? Of course, he didn't know what I was talking about and said he didn't imply anything, that he was just asking to be sure if it was true that she had been to the hospital more recently. So, I told him that he didn't need to phrase the question that way, he could have just looked at her chart, where all the information is anyway. he didn't need to sound so negative, and point out the obvious, that she isn't doing as well as she was last year. I don't need to hear that from him, I know already and I don't want negative people like that around me or my child. He apologized about 4 times, he said he didn't mean to come across as abrupt, but he didn't mean any harm by it. I was still mad though, because I could tell it wasn't really sincere, but I'm glad that I stood up to him and told him how I felt. I have learned that I can't keep my mouth shut when it comes to things like that. People then think they can talk to you that way, and I'll be damned if I let him do that. I don't want negative energy around my daughter, she has enough with this disease. I want to be positive, and hopeful, like her neurologists are. They told us that (despite this little set back) her brain was doing better than before at least, and really the reasons she's been in the hospital have been more because of her immune system being too weak to fight off infections.
Zev actually emailed the patient relations person from the hospital about the wrong medication that was given and about the doctor who was an a-hole and we're scheduled to talk to her and her boss today about all the issues we've encountered at UCLA.
Anyway, we'll see what the EEG shows and keep you all posted with new info as we get it. For now, please continue to pray for  our baby. We love you all and thank you for your continued support

Peace


Frani

Thursday, July 19, 2012

Fun times in the hospital

hey guys,
we were shooting this video over the weekend to show you how Leah was doing, it's funny...
:)


Also, we are came home yesterday! woot!
i'll post a larger update later

Peace!
Frani

Monday, July 16, 2012

Cough Assist and Vest

Hi everyone,
Most of you may know that Leah is back in the PICU this week (since last Friday). This time, she was having difficulty keeping her oxygen saturation at 100 and kept going down to 89, 90, 94, 87, etc. Typically she always stays at 100 or 99, and when I listened to her lungs, they sounded so full of mucous, but we couldn't suction any of it.
I was afraid that we'd have another scare like last time so we packed the car up early and took her to the ER  on Friday morning. We decided to bring her to the Santa Monica hospital since it's smaller and it feels a bit homey-er than the Mattel children's hospital in Westwood.
Our stay so far has been pretty good, the staff is amazing and we loved seeing all her nurses from last time here this time too. We only really had one issue, which was that they lost her antibiotic eyedrops that we brought from home and that had cost us $200! because the insurance didn't cover it. So, it was a little crazy there for a while but they were able to have the Westwood pharmacy deliver it on time. We also found out that she has C-Diff, which is an infection that you get when you're on strong anti-biotics (which she has been for her UTI) and it kills to good bacteria in your stomach. So, C-Diff then grows and infects your stomach so now she has diarrhea, and of course because of that, she's been having some fevers :(
We also asked for a cough assist machine and a vest this visit as well, since they are machines that would help keep her lungs clear of any fluid. The Vest is a vest that is connected to a machine that vibrates so it shakes up all the secretions that collect in her lungs. Our lungs are typically full of condensation, because of our mouth and throat which are like a filter for our lungs, you can see the condensation on a window when you breath onto glass and it's cold. Most people move around alot during the day, so all the condensation gets moved around, or coughed out if there is something in our throats. Leah doesn't move much at all now, since she is so sedated from the seizure meds. Because of this, we can't leave her on her back for too long because fluid can collect in her lungs and give her pneumonia. This is why we have to move her to her sides and alternate moving her onto her back every couple of hours. Whenever we hear her lungs, we try to listen to see if there is any mucous blocking her airway, or making it hard for her to breathe, and if there is, we suction it out with a machine. But sometimes, if the secretions are really thick, they'll just hang out onto the walls of her lungs and we can't get them out, or they are in the lower part of her lungs where the suction catheter can't reach
So the Vest surrounds her torso and vibrates, helping mobilize the secretions and making it easier to get them all out. Then we use the cough assist machine, which, like the vent, gives her breathes but then quickly pulls it out, simulating a cough. This helps bring up any secretions in the lower part of her lungs. We are trying to get all this equipment before we leave so that she doesn't have to keep coming back to the hospital, but of course, the medical system is so easy to navigate (not), things take time. But, the good news, is that our medical supply company says that it should be in either tomorrow or Wednesday, so that's good. The Vest could take a little longer, but we're waiting to confirm if that's true.

Anyway, some good news is that I will be going to Star Wars Celebration VI!!! One of Leah's supporters, who wishes to remain anonymous paid for my plane ticket out there! A couple of people from her support group, Leah's Angels, also got us a hotel reservation and tickets to the convention too! (Thanks Dutch/Kathy/Stephen and Michael/Lisa Stanton!!!) I couldn't believe it when they called and told us the news. I am super excited, since I'll be able to meet all of the amazing people that I've been talking to through FB over the past year in person. I'll also be attending a special dinner in Leah's honor with another group of people from Leah's Angels, and I'm gonna meet Peter Mayhew and his wife! *geeking out*
Anyway, so yeah I've been prepping up for that, and it's a little scary to leave her and be so far away from her if something does happen, but I really want to meet all you amazing people who have been there for us throughout this last year, encouraging us with messages and comments, creating fundraisers and sending us money and just spreading the word about Leah. It's incredible to think how many people across the globe are so involved.


Because of this, we've teamed up with one of the senior producers I know from the video game industry  as well as another producer who works in TV on the show "Intervention", to work on a documentary about Leah, and how the global Star Wars community brought her story to light, and how that inspired even more people (not necessarily Star Wars fans) to know about her and pray for her. She really is so inspiring, as we've all seen her struggle with this disease that seems so weird, but is incredibly common among children, has no cure and also has much less advocacy than other diseases. But this documentary is not only about Leah, or about us, it's about you. You're the community who reads this, who sends us letters in the mail and messages on Facebook. You've been touched by this beautiful, resilient baby and I want the world to know about you too, because I know that we couldn't have gotten this far without your support. Not only your donations, but your emotional support too, sending us prayers and telling others about Leah, it's very inspiring. So, I'm asking that if you'd like to participate, please send us a video of how you learned about Leah, and how it's impacted your life. I get so many messages from people about this and if you're willing to share on camera, please interview yourself and send us a video of it. You can send the Youtube link to our email: princessleahdiaries@yahoo.com
I've told myself that this project will be completed by her next birthday, February 17th, 2013, when she'll turn 2, but I'd like to get as much footage as possible before then of course, so we can edit it all together. I'll probably post a video request video on Youtube later too, so you can share.

And, here are some pictures!


Being admitted from the ER
Fevers are no fun :(

The cough assist machine
trying to bring down her fever


where's leah? lol
sleeping beauty



best daddy ever!
Grandma came to care for her on the weekend while we did laundry


Thank you once more for all your support, I will post another update when we're getting ready to leave the hospital.
Peace!
Frani



Tuesday, June 12, 2012

Update from the PICU

Hey all,
I just wanted to get on here really quickly before I went to bed and give an update on what's going on.
So far, all the second round of lab tests they did to see if she has an infection have come back as negative, but for some reason, the past four nights she's been getting fevers and no one can explain why. Tylenol seems to be helping though. Our nurse (who is amazing by the way, we love the Santa Monica PICU) suggested talking to the docs tomorrow about maybe consulting with neurology as it could be some sort neuro related thing. I thought maybe it could be teething? which if it was, would suck because she's been getting antibiotics. But, it might not be that, since she did show a lot of fluid in her lungs when they did the chest X-ray, so we don't know. We'll talk to them tomorrow and hopefully things will clear up a bit.
I'll try and update more tomorrow, please keep praying for her.
have a great night
peace,
Frani

Sunday, June 10, 2012

A big scare

Hi everyone, I finally have enough time and energy to sit and write an update. Here is a re-cap of this past week. Last Wednesday we had an appointment at the UCLA outpatient EEG lab for a 4 hour long EEG (Electroencephalography)to measure what her seizure activity was and how it had changed in the last 2 months she's been on the Ketogenic diet. We woke up at 6:45 am to get ready for the visit at 8 am, she got a bath and we packed up all her meds, milk, oxygen tanks, emergency bag, etc.We actually left only 5 minutes later than I wanted to, but we were still a little late when we got there. Zev had a blood draw at another doctor in Hollywood that morning at 11 am, so he was going to go in a separate car so that he would be able to take off later. The first bit of drama that morning was that we were about 5 minutes from the house on our way, and we suddenly remembered that Zev had to take the other car which our friend had lent us while he was out of town, and he was sitting in the passenger seat. So, we drove back to the house, Zev jumped out went to get the keys to that car from the apartment. While in the car, Zev calls me and says he can't find the keys, but eventually he did and was on his way. Once Jill and I got to the EEG lab, and got settled in (we had to change her diaper because Leah peed in her car seat and was miserable the whole way), I get a call from Zev. He was right around the corner from the hospital, but the car had stopped on an incline and he had to push the car all the way up the hill (with the help of 2 female doctors who stopped to help). Something had happened where it overheated or something but it seemed like it had died, luckily a few minutes into the call, he was able to start it back up again and got there safely. Of course, the car did that a few more times throughout the day, but again it was able to turn on again once it would shut off, luckily. We hung out with Leah and took naps and watched Harry Potter and the Deathly Hallows Pt.1 and Pirates of the Caribbean 1. Everything went pretty well, we were able to document some of the spasm movements that we weren't sure had been seizures or not, so we were hopeful that this EEG would show something promising. Once we got home, Jill was getting her ready for her bath again, since every time she gets an EEG, she has that gunky stuff stuck in her hair and she wanted to wash it. I was getting ready to go to downtown LA to meet with some vendors for work at the gaming convention happening, the Electronic Entertainment Expo or E3. I'm glad I didn't leave because a few minutes later, we heard Jill start calling out her name, but in a different tone of voice than the usual. "Leah...LEAH! Come on sweetie, don't do that... LEAH!" We ran in to check in on her and I saw her laying on the playmat on the floor (about to get her bath) and her eyes were wide and her face was blue, the HR and O2 monitor started alarming as her oxygen levels were dropping fast, from 80 to 70 to 40 and kept going lower. She was non-responsive and Jill said she had been holding her breath when she was peeing, and now even with her ventilator which breathes for her, she was still turning blue. I quickly scanned the room for the ambu-bag to hand bag her lungs but remembered that I had left 2 of them in the car and hadn't unloaded either.  Meanwhile Zev, and Jill began to work on bringing Leah back.  I ran to the car and back and started bagging her trach. Zev was patting her gently on her cheeks "NO not like this, not now, I'm not ready for this---I'm not letting you go!"  It felt like time was crawling and her sats felt like forever to come back. After a few seconds, I could see her face turning a little pinker and within a minute she was back up to 100%, but we put her back on the vent and it sounded like something was disconnected and she started de-satting again, so we changed her onto her travel vent and she stayed up at around 98-99%. Meanwhile Zev shakened was calling 911 and explaining to the operator what was going on. The fire department got there first and they helped us adjust one of the settings on her vent so that she could come back up and they told us the ambulance was on it's way. Zev greeted them at the door where he gave them Leah's basic information. They actually got there super fast, they are only about 4 blocks away from us, but still they were there in no time almost. By the time the ambulance got there, she was stable again but we were still concerned with why this happened so we asked if they could take us to UCLA instead of the closest hospital, which would have been Cedars Sinai. They agreed to take us and I held her on my lap in a gurney while I rode with Jill in the back of the ambulance. We have to give Jill a round of applause for the way she handled it calmly and efficiently. She's amazing.
 Once she was in the ER, this was at around 4 pm, they did all the routine tests, like X-rays, blood tests, and they suctioned her trach secretions to see if maybe she had a trach infection again. The X-ray reading came back as pneumonia so they wanted to admit her to the PICU, but this time at the Santa Monica hospital, which is new and had beds available. We were transferred to SM in another ambulance and this time Zev drove there to meet me since he had to take Jill back to our place so she could go home. We were finally admitted to a room at around 9 pm, and the room was much nicer, though also much smaller. She had a pretty rough night that night, I stayed with her since only 1 parent could stay due to the small size of the room and we usually take turns staying with Leah. So, neither Leah or I got much sleep that night, but she had great nurses and this PICU only has 4 beds, and it was only her and 1 more patient, so the staff was able to pay a lot of attention to her there. The next day, I had to work since i had morning meetings to go to, but luckily once that was done, I was able to just take my laptop to the hospital and work from Leah's room, which was nice, just because it's always better to be there in case anything should happen. Zev took care of her during the day.They started her on antibiotics and told us it should clear up soon and we'd have to wait and see what the cultures came back as. We asked if, now that she was admitted, she could get the broviach tube taken out and replaced with a port that would sit underneath her skin. We had been noticing that it would irritate her skin since we had to change the dressing every week and every time you expose the tubing to the air, there is a higher risk for infection, so we asked they said that at the moment it would be a voluntary surgery and not medically necessary so we could be charged for it. They also told us that they didn't want to her to go to surgery while she was sick, as it could be complicated for her. So, we dropped it, but still thought it would be a good decision to do soon, since it had been getting redder. So, Friday they told us that she seemed to be getting better and that the cultures had come back negative for infection so they were thinking on discharging her on Saturday or Sunday. Or course we told them they were crazy, who discharges on the weekend? Zev and I trusted our guts as we've learned throughout this journey to do. Especially since she needs home health nursing, and the nurses weren't going to come on the weekend to do the home health re-admit with the RN supervisor, so the social worker fought for us to stay the weekend. 
We are so glad they didn't send us home on Saturday. Zev and I educated the nurses on Leah some more. Zev watched her like a hawk. That afternoon, she spiked a fever of 100.8 so they gave her some Tylenol and  decided to draw more blood in case they missed something from the previous one that came back ok. She had a couple more fevers last night and today as well. They changed her broviach dressing on Thursday, but it was looking really red and they decided to change it again yesterday, just in case. So, now they are saying that there's a possibility that she does have an infection and it could be from the broviach, so they drew blood from it to see if it looked infected, but they also spoke with the infectious diseases team and they suggested removing it and replacing it with the port (duh!). See, the human body is really good at being able to defend it's own tissues from infection, but once you So, they are going to wait until she's stable of course, but once she's looking ready to go home, they'll schedule the surgeries both at the same time, one to remove the broviach and one to place the port. For now, she's been having some issues today with de-sats again, and building up too much C02 in her lungs, so they had to adjust her ventilator settings to have more breaths per minute and that seems to have helped, but she has a lot of really thick secretions, so they have to stay on top of suctioning her often. We also just found out that one of the anti-biotics was mixed with dextrose (sugar) which she can't have because of the Keto diet, so that may be a reason why she was having issues breathing again today, but they are going to be checking her blood serum ketones to see if it affected her ketone levels. She hasn't had a fever in about 5 hours, thank g-d, but we're hoping that the next few days don't throw us any more curve balls.


Here are some pics from the last week:

 



I wanted to thank of all the people who have been sending us messages on her Facebook page and to those who've been voting for her in the cutest baby contest.Zev has been taking less time on Facebook. It was getting to be a little hard on him since it was taking away from Leah.It's hard for him to stay away because of all the support, but, Leah comes first. And she's still fragile in need of two people around her. But, you have no idea how much we enjoy reading the comments and it really helps us get through all this craziness, just knowing there are other people out there who care about us, we feel less alone that way. 
I think it's funny almost when people tell us how strong we are and how amazing parents we are, but we really don't feel that way. We feel like normal people who are doing the best they can for their baby. I think a lot of parents are strong, not just us, a lot of people have to go through what we go through, but may not have all the support that we do, and I feel lucky we have friends all over the world who we know have our backs, and are taking this journey with us.  They don't have to...but they do and we love them for it. That's a lot more than what some people have, so we feel blessed that our life, while not easy, is still happy. It's full of love and hope and occasionally despair, but we've seen so many babies pass away in the PICU, that we appreciate every day we have with her, because we know that things like what happened on Wednesday could happen again and not end as well as they did. We try not to think the unthinkable, but we know it could happen and that just makes us try harder to give Leah the best care we can. I don't think we're super heroes, I think we're just people who have been given many challenges and are in the process of learning how to face them. I think every parent of a child with special needs is a super hero, and there are way more than you think. But, I am glad that Leah's story inspires people to help others, to get involved with their community in some way or to connect with emotions they may have never felt or maybe have before. You see, she's the real super hero, she's the one who makes us strong, she's the one who inspires us to keep trying, because despite all the odds against her, she refuses to let it defeat her.


Peace,
Frani

Wednesday, May 30, 2012

Just keep swimming...

Hey guys,
Sorry that it's been so long.....actually, I'm going to stop apologizing in every first sentence of my posts, you know that I want to update sooner and you most likely know why we don't have time usually, so I'm going to stop telling you every time.


Ok, now that that's out of the way, on to the updates!


Leah got a new medical bed, which was donated to us from MedLift, thanks to one of Leah's Angels group supporters, Phil Wilson. It is a fantastic bed, since it allows us to change the angle of the bed with the touch of a button. We typically had her on pillows so that when she was eating she was propped more upright. Since she has a trach, she can't lie flat when she eats because there could be reflux from the stomach that goes into her lungs and that would be really bad. The bed really makes it easy for us to adjust the angle to what we think would be most comfortable for her. It also doesn't strain her back like the pillows did and it vibrates, so when she is more restless than usual, we just turn it on and it helps her fall asleep. It's much bigger than her old bed, so now we can sleep next to her and cuddle without straining OUR backs either!It's been really great, we just got it on Friday, and we love it.


We also got some bad news from our Medi-cal office. It turns out that my income is a couple hundred dollars more than the threshold to qualify for free medi-cal, and now our share of cost is really high, like almost $3000 per month! We're in the process of talking to CCS (California Children's Services) so that they can fund the nursing hours that we need, so hopefully it will get resolved soon. It's just so stressful to navigate the whole medical system in this country. I wish I could just bring one of the people over to the house so they could see her and then tell me that she doesn't qualify for these programs. It's so ridiculous. Anyway, I'm trying not to let it bother me, and just continue with all the bureaucratic BS that I have to do.


We are talking to some people from Chai Lifeline Foundation to help get us in touch with this neurologist at CHLA called Dr. Richard Boles. He is a specialist in the mitochondrial disease field and we really want him to see Leah. We love our docs at UCLA, but we don't really feel like they have all the experience and expertise necessary to really give her the very best treatment for her disorder. We need to talk to someone who's seen hundreds of cases like hers and maybe re-asses the drugs she's on. Right now she's still on Topamax, Keppra, Clobazam, Clonazepam, Lasix and several vitamin supplements. But the problem is that she's not really getting any better and we know that it could just be the progression of her disease but I question the need to be on so many drugs when she's already on the Ketogenic diet for seizures too. I've noticed that since she had the big seizure in November (also when they started Topamax), she has stayed really puffy and she's been retaining her urine for very long periods. She still pees the right amount, but sometimes, like yesterday, she doesn't pee for 17 hours! Can you imagine holding your pee for that long? It must be super painful! And when she pees, she really struggles to get it out, and she's just miserable until she finally goes. The past few days she's been peeing every 12 hours on average. But that's still a really long time and even though the doctors say they think it's her neurological status (as in, her brain is not working well so her bladder doesn't get the message to pee), I have my concerns that it could be a side effect from some of the drugs she's on. She's also been on Lasix (a diuretic) since November for the puffiness but she isn't getting any less puffy. 


We thought that a way to help her pee, could be to use gravity since when she would sit in our laps, she would pee a little easier so we got her a potty chair. And funny enough, the potty has really helped her poo more, doesn't help as much for pee, but for poo it's great. the gravity really helps her get everything out. Sorry, it must be really gross hearing all this, but this is our lives. We celebrate every time she goes to the bathroom, because it's so hard for her to go. Here's a pic of her going potty with the help of Nurse Jill, haha (Leah's gonna hate me for this when she gets older). Jill has got to be really dedicated to put her face that close to the potty, she's really become part of the family, along with Betty.


Another cool thing that's going on are a lot of different grops from all over the Star Wars community have been doing fundraisers for her, including an art auction, selling pins and stickers and postcards and badges. They are promoting them on Facebook now,  and I'll ask that they post them on her Facebook page in case anyone wants to participate. 


In other news, we submitted her picture to the KOST 103.5 FM Cutest Baby in the Southland contest and the picture with the most votes wins $5000! So, I'll paste the link here, please share it with everyone you know! We could really use the money and i have no doubt she'll win since she has so many people out there praying for her
http://www.kost1035.com/cc-common/contests/photo_contest.php?id=185276&image_id=272047
The entry with the most votes wins, but you can't cheat and use several emails to get more votes, because we'll get disqualified, so just share it with as many people as you can! and bookmark it so you can vote every day until June 14th


I think I'm gonna do a video post this week too, since it's been a while since we showed you how Leah is doing and it think it would be good for everyone to meet her on video, if they haven't before.


Even though our lives are really busy, I've been trying to exercise every other day with Zev in the mornings and mediating too. We've also started eating a lot healthier which has made a big difference in my mind at least. I sort of feel like the past year, we were taken out of our lives and placed in someone else's life for a while. So I felt like I was just artistically dead for a year, I didn't really draw or animate or do anything that creative. I made a painting while we were in the hospital, but that was it. So, now I feel like it's all coming back. I started drawing again; I suck of course since I haven't practiced, but I don't care, I know that if I do it every night, I will get better. We're also going to start doing family creative night! Nick is pursuing his acting career, and I love animation, and Zev loves music. So, we're going to do improv sessions at home after dinner, where Nick can practice acting scenes and so can I (since animators are actors too , you know), then we'll record it so that I can use it as reference later and animate the scene and Zev will make improv music to the scene. He's a voice actor too, so he'll be practicing acting as well. We haven't started yet, since Nick is in finals, but it's an exciting idea for a cool family project. 
I'm definitely going to be be posting in my art blog again (www.thedailydrawer.blogspot.com), but I think I'm going to just post all the drawings that I did in a week, once a week, since it's too much trouble to upload every day.


We also want to start working on a mini documentary, since I love editing too, about the impact that Leah has had all over the world. So, if you want to share a video with us about how/why you got involved or heard about Leah, we'd love to know and put it in there too! This is a longer term goal, of course, but I would like to have at least some of it done by the end of the year.


Well, I think that's about it, I'm sure I'll have more stuff to talk about next time. I wish you all the best and thank you for reading my super long post, I promise to make an effort to post more often!
Thank you for all your support! It really makes a difference!
Peace,


Frani

Friday, April 27, 2012

Hello there, 1 am. Fancy meeting you in the ER...

Hey Guys,
It's a little after 1 am and I'm sitting with my laptop in a small ER room with Leah, waiting for a bed in the PICU  to open up. We arrived at the ER at around 7 pm, but this is normal. We've been through it too many times to think it would be any different than before. Leah  is in the ER for a UTI, thankfully nothing too serious, but I'm glad we figured it out. We noticed the past few days, she's been more and more agitated, has had a higher heart rate when awake and when sleeping and her temperature has been higher than normal.
Zev was on the phone with the docs all day trying to figure out how to help her with her discomfort.



OK, so I had to stop writing because we were finally brought up to a room in the PICU. Leah just got settled in and it's 2 AM now, so I'm going to go to sleep, but I'll post again tomorrow probably, since I did want to write more, I'm just exhausted right now

G'night!
Peace
Frani

Monday, April 9, 2012

Spring News

Hey everyone,
I keep feeling like I should be posting more often but I can't believe how fast time goes by and all of a sudden, bam! it's April.
Anyway, I do enjoy writing blog posts, it's just finding the time to sit down and write is increasingly difficult everyday.I just feel so tired by the end of the day, the last thing I want to do is write. Tonight though, I need to stay up, so writing si the one of the things that will help me not fall asleep. For the nth weekend in a row, we've found ourselves in this same situation, having to take turns on night shifts because either the nursing agency couldn't find any nurses available to work the weekend, or the nurse called in sick at the last minute. Tonight, it was the latter; this nurse came on Wednesday to train with Jill and Betty, but left after an hour because she said she wasn't feeling wel and that the room was too cold. We then had her come yesterday and finish the training, I even asked her before she left, "you're sure you'll be ok for the weekend?" and she said yes. Of course, she called at 6 pm (when her shift was meant to start) saying that she was feeling feverish and she wouldn't make it, which of course means she'll be contagious if she tries to come tomorrow and I can't afford Leah getting sick.

It's not too bad, since my wonderful mommy happened to be here and offered to come over at 3 am and work from 3am-3 pm so that we can sleep and get our laundry and groceries done tomorrow. She's also coming back that night at like midnight to stay with Leah until 6 am when the Monday nurse comes. We're really lucky to have her, she's saved us so many times in this same situation. Sometimes she can't, and we stay up all night, but sometimes she is a huge help.

I don't really mind it too much though, Leah has been having better nights recently, sleeping at least a good chunk of 3-4 hours at night. She's been teething pretty bad since last weekend, so she's been a bit more fussy, but her top molars (left and right) finally broke through and now she just has 2 incisors n the bottom that are coming in. Poor thing, gets 4 teeth at a time, and suffers so much. So, of course she's been drooling like crazy and her nose has been super runny too. At first we thought maybe she got a cold, but then I felt her teeth and knew it was that.

Anyway, as I was saying, I really enjoy spending the night taking care of Leah, we sometimes get so used to the nurses, that it's nice when they're not around because it feels more intimate. Of course, they are a huge help and take care of her so well, so we think they're amazing, but I appreciate the personal quiet time I get with my daughter too. Looking at her now, peacefully sleeping in her bed, I get so inspired by her. She is my hero.

I actually do have some news, although this time it's related to Leah, but not quite about her. It's about me.
I got a call yesterday as I was shopping for final ingredients for our Passover Seder, from the  UCLA genetics office. They wanted to let me know that they had received the results back from the blood test that I took the last time she was at the PICU. It looks like I have the same exact mutation that Leah has. I obviously don't have the same symptoms as she does, so it's unlikely that I'll develop it, but there is always that small chance. It was a bit shocking at first, but I've decided that I won't worry about it until there is something to worry about. If there's anything that my daughter has taught me it's to live in the present, and appreciate every minute we have together.

I never really thought I'd be a mother of a child with disabilities, but now that I am, I feel like I'm the luckiest mom in the world. That probably sounds strange. Of course, it is very challenging because you need to learn so much more about caring for your child than before, but it's so incredibly rewarding. The friends that we've made because of her, the community that we are part of now, the truths that I've discovered about myself, they are worth so much more than I can imagine, and it never would have happened, had she been just a regular kid. I know that she'll never be just a regular kid, and it hurts me to see her suffer, but I also see her enduring, fighting, living, despite everything that was said about her.

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So, I started writing the above when I was watching her on Saturday night, and got busy with the baby, so I did not get a chance to finish writing. I would like to write more this week though, but now I'm at work and I can't :(
I'll write again soon.
Thanks once again to all of you who have been helping us out, you are amazing

Peace,
Frani

Thursday, March 8, 2012

March Madness...


Hi All,
It's Frani
Things have settled down a bit and we are finally able to give an update today. Some of you may have seen the posts on Facebook about Leah going to the ER on Tuesday.
We took Leah to the ER at around 8 am, because she was having some seizures. We were able to stop them pretty quickly by administering some clonopin. She fell asleep on the way to the ER, thankfully. We got her in and she got the usual: blood tests, trach secretion culture, urine analysis and chest X-rays.
After a couple hours, we heard that her WBC (white blood cell) count was elevated, which is a sign of infection. The urinalysis came back negative, so there is no UTI that we're aware of. The chest X-ray, however came back showing some early signs of pneumonia, or fluid in the lungs. Luckily, it's not too sever, and is most likely caused by an infection and the fact that she isn't very active due to so much sedation. When the vent pushes moisture into her trach, fluid collects in the lungs. Normally, we are pretty active and can cough anything in our lungs out, but since she is pretty much laying down most of the time and not moving as much, the fluid collects in her lungs; and though she sometimes clears it by coughing it out, but when there's an infection, it gets thicker and harder to do.
Anyway, they told us she would be admitted to the PICU at around noon, but we didn't actually go upstairs until 6 pm. Not too bad, considering were so busy yesterday, but still a very long time waiting. After she was admitted, I took off to the house to pick up an overnight bag for Zev and have dinner. We decided that since I needed to go to work the next day, Zev would stay overnight with Leah and I would come in early the next morning to hang out with her until I went to work. I start work at 10-10:30ish, so I woke up early the next day and headed over with lunch for Zev and kisses for my baby.
On top of everything else, for about a week, she's been biting on her tongue as a reflex and since she has 2 bottom teeth, she has a big sore on the bottom of her tongue that she keeps scraping, so we've been trying to get her to bit the pacifier or our fingers (ouch!), since it will never heal if she keeps going. So, she was dealing with a lot of pain from that as well. Luckily, Zev insisted on having someone from Dentistry come in to see her in the PICU yesterday and they are working on making a mouth guard for her to wear and not bit herself. Hopefully it will help. She had a pretty rough night last night as well, she needed to get morphine twice to help her sleep from the pain of the mouth and the pain she was probably in from being sick.Zev was really upset this morning after he woke up, he found that she had bitten her tongue again and was bleeding from the mouth and no one had noticed or checked on her.
Zev is with her now in the hospital while I'm at work, writing this on my lunch break. I meant to post last night, but was busy with Leah, Zev and Nic and by the time I got home I was way too tired.
Anyway, I'll try to keep posting while she's in the PICU, but keep praying for her and us, we really need it
Thanks
Peace
Frani



Sunday, February 19, 2012

We're broadcasting you Leah's Birthday party, LIVE from UCLA!


Come Join us!



Free live streaming by Ustream

Friday, February 17, 2012

HAPPY BIRTHDAY LEAH!!!

Today Leah turned 1 this morning at 4:18 am, a miracle as we had many doctors tell us that she may not make it to a year. I took the day off from work to be with her today on her special day. It's been very busy trying to coordinate everything for her big birthday party that we're throwing on Sunday 2/19, although luckily we've had a lot of help from our friends and supporters. If you don't know about the party, the invite is here an all who read this blog are welcome to join us! http://www.facebook.com/events/272815919452413/

I'd like to give an update, since it's been a while since the last post. We were told by our neurologist yesterday that she received the genetic tests back, and it has been confirmed as a mitochondrial disease. It's similar to the gene mutation of Leigh's syndrome, but it's a completely new mutation that has never been documented in anyone, so they still don't know what the effects will be or what the prognosis could be for her. I still consider this good news, since it's unknown, there's nothing that says that she'll get worse or better. I have to believe that she'll get better. I have to believe that she'll live, and I truly believe that having that mind set and making sure that she is loved and supported, that it will help her recover. I believe in Leah and I never want her to sense that I don't. Of course, it's hard to hear that she has a disease that is untreatable, and anyone's first reaction would be to think of the worst possible outcome. But, everyone's last day on earth is unknown, so why not think about the positive outcome? Why torture ourselves living in fear of her getting worse or dying, when we can visualize her living, and surviving this disease.

When Leah first got sick, I thought why? Why has this happened to us? We're been through so much is our lives. Even though I'm young, I suffered a pretty traumatic childhood. I lived away from my mother for 8 years since I was 10, and I lived with my aunt who would beat me on a daily basis for things as trivial as not taking the trash out, or smashing my face into a wall and breaking my glasses because I couldn't find something she needed from her bedroom. My father died 8 months before I was born, so I never knew my father, etc. All these horrible experiences, which in the end made me stronger, but where very difficult to go through. And then to find the perfect person and have a wonderful marriage and life together and have our beautiful baby girl and live in bliss for a coupe months. And then she gets sick, and it's like, "Why?!, after everything I've been through, why this? why now? why MY baby?" And i realized yesterday that all those things weren't punishments, they were practice. Both Zev and I needed to go through really difficult experiences in our lives so that we could have a bigger purpose, which is to be Leah's parents. Not only be her parents, but be the best parents we could be for her. And in order to do that, we had to be strong, we had to never give up hope, never stop fighting for her. I know now that I'm not destined to be a great animator, or a great art producer. My true destiny is to be Leah's mom. She is already changing the world, she's bringing people from all over the planet together. She's showing us that human compassion and love for another is still something that exists. She's taught so many people to appreciate their loved ones, to appreciate their kids and parents.  And I actually feel lucky and honored to be her mother, and even if we had known from the start that this is how things would have unfolded, we would do it all over again. She is our hero.

I'd like to thank everyone who has been there for us throughout this ordeal, both here on the blog and on facebook. The Princess Leah's Angels group has also been so supportive and amazing in helping us with anything and everything we need.  We also have received so many messages and presents for Leah, so thank you to all of you who have done that as well. The avalanche of support we receive and the amount of prayers and positive vibes that are being sent towards Leah is amazing. It's gotten so big it's almost hard to wrap my head around it. Sometimes, we are so involved with her and our own lives that we forget just how many people actually know about her and love her. We received a beautiful reminder from the daughter of one of Leah's supporters in Canada, who is only 15 but took the time to make a very touching video for Leah, and showed us just how many people are thinking of Leah. She also created the Junior Princess Leah's Angels group on Facebook and has rallied 30 people in just a day, and I'm sure it will continue to grow with time. Thank you Anabelle, you are a true angel.


I'll leave with that for now, but for the most up the date info how how Leah's doing, make sure you "Like" her page on Facebook here: http://www.facebook.com/pages/May-the-Force-be-with-the-Princess-LEAH/166607313399901

We will hopefully have no crazy news until after the party where I'll post lots of awesome pictures.
Oh, and if you can't make it to her party, I think we will be streaming it live from our laptop through Ustream, but I'll post details of that later once I confirm it

Peace!
Frani



Monday, January 16, 2012

A New Year, a New Hope...


Hello World,
We’ve been experiencing some bumps along the way, but before I start blabbing, I thought I would thank all of you that have sent in donations to help our baby Leah. Your donations have helped us get a car (that works),a new bed for Leah, food, clothing, utilities, rent  and even equipment that we desperately needed.
 Last year YOU donated over $65, 000.00 to help our Princess Leah! Life would have been so incredibly difficult if it were not for your amazing support. We THANK YOU, and send you much LOVE and PEACE.

And now to our regularly scheduled program…
When we last posted, we had to deal with several issues, including the fact that our baby Leah could be dealing with a Mitochondrial issue. Since then, we’ve had a few visits back to the ER and ICU at U.C.L.A..   I have to say, despite all the love we have for most of our doctors, every once-in-a-while we run into that 2% that make our stay a nightmare.
Leah began to have another set of seizures and we were off rushing to U.C.L.A.. this time around, we were greeted by one of our favorite doctors, Dr. Lerner. He has been part of Leah’s life since the very beginning. That day, he happened to be visiting the hospital reading a few EEG’s and saw that we were again in the ER.  Things went pretty fast with his help. He knew the nightmare we had last visit when we had to wait for almost 3 hours to get Leah help. We were told that incident caused the Neuro department to re-evaluate the way they did things.  The ER staff was quite helpful and most knew of her highness Princess Leah. From there, once it was proven that Leah was having another set of seizures; it was back to the ICU thanks to a spot EEG that was ordered by Doctor Lerner.
Leah continued to endure mini seizures. For most of her time in the hospital she was sedated. Frani and I kept looking at the video camera and EEG machine…not that we knew how to read it, but we still kept checking it wondering what was going on in her head.  There were no big changes while this visit took place.  
To make this update on Leah’s stay short, I’ll cut to the nightmare. Like I said, most of the time it’s been satisfactory, but the communication between departments and certain policies, make it atrocious at best. This time, they couldn’t wait to kick us out. I literally had a nurse asking me “So, where’s your wife?—Where are we at?”  How’s that for showing some love to a family that has had to endure the rollercoaster ride of their lives and has managed a bill of over 2 mil?  U.C.L.A. has a policy that if a child is on a vent, they have to stay in the I.C.U.. So, what do you do when you have a child that STILL needs to have a vent, but cannot be out on the “floor” and is “not sick enough” for the I.C.U.  either? You see what I mean? We were in POLICY LIMBO. Then to top it off, they didn’t want to release an oxygen tank to us despite the need that Leah has to get her home? It’s a hospital and it can’t spare 1 damn small tank for this baby?  The respiratory therapists on duty could not believe it either. Most of the RT’s have become family as well. They love our Leah and have seen her fight the fight. Jaws were dropping as this same nurse began to make it an even bigger deal. They were making some phone calls and someone (who we can’t mention) gave the okay but told the same “nightmare nurse” not to make this a big deal and that he would approve of the oxygen tank leaving the hospital. It was followed by him telling her “This conversation never happened”. Well, you can just imagine what she did. She ran to the charge nurse and told her. The S*&t hit the fan. Meanwhile, I can’t believe what is going on. Is this really happening? The RT’s were trying to calm me down. I had everything ready to leave and a wheel chair waiting. Remember, this is happening because they need space in the I.C.U. and over a little oxygen tank my child needs to get her only 15 to 20 minutes away. We’d rush back home and to the hospital but it was rush hour, and they REALLLYYY wanted us out. Poor Leah, was unaware of the stupidity that revolved around her. Then our savior arrived! You have heard of her on here already several times. Her name is Dr. Ischander. She walked in, in the middle of all the drama. By then, I was so angry, tears were about to start coming out. She looked at me and I explained what was going on. The she said “this baby is NOT going anywhere!” The nurse looked a bit puzzled.  “This baby needs to be on the new vent settings for 48 hours before she can be sent home. If for whatever reason the vent settings are not right this baby can have serious problems. She stays”. Hurray for Dr. Ischander! So U.C.L.A. gets a 10 for making the admitting process a good one, and a 0 for the discharge. Inconsistency can ruin a hospital.
Home for  the Holidays
After our 48 hour stay and being released from the ICU, we made it home safely. Leah was extremely sedated as we tried to keep the seizures at bay. It was very hard seeing our little girl so sedated. Her eyes seemed to float in opposite directions; she trembled and was having these weird movements that I can only describe like a startle. Honestly, we were happy to have her home for the holidays.

Chanukah was really one of the best for me. I had my baby home and we were happy. My mom was finally able to make the trek all the way from North Carolina. My mom has had a few health difficulties and financially was not in a place to make the trek, but luckily we had one of Leah’s benefactors foot the bill.  It was great seeing her and it was also such a joy to see my mom holding our little Leah. She was so happy to make it out here too. I’m not going to lie, it’s always great to have my mom give the big hugs when needed.
 While Frani cooked one of the most delicious dinners ever, we placed all the new ornaments throughout the house and invited some of our friends to celebrate the Festival Of Lights on the first day of eight. Our friends,  Mike and Rachel, came over and we lit the first candle. Chanukah now means a little more, because for us, Leah is our little light. And like the Maccabees who fought against the Assyrian Empire she is a fighter too. She is also like the oil that they found for the Eternal Light at the remnant of the Temple they tried to destroy. The miracle is they only found enough oil to last less than a few hours and it lasted 8 days. Leah is our little light. One of Leah’s names is LUCIA. It means light in Italian (Frani’s dad’s side is of Italian decent).
Although Chanukah was a happy 8 days for us, Leah had some rough times as she recovered from her seizures. I kept telling myself not to judge her health because I knew that part of the issue was all the sedation they had given her. Frani and I would caress her beautiful face, cuddle with her in her new single bed we got (with the help of donations), and sing or read to her. Regardless of what they tell us, we will continue to try our best as parents!
Christmas, was around the corner and we knew that there would be a possibility that we would not have nurses. Betty one of our amazing nurses, came to the rescue and stayed with Leah for half the day on Christmas. Thank you Betty. Our other nurse and newest member Jill, also came for half a day too. So it wasn’t too bad. Thank you Jill. Still, Frani and I took shifts taking care of Leah when we didn’t have nurses.

Then we had a visit from the manager and Chef’s of MASTROS! It is a 4 star restaurant in Beverly Hills! One of Leah’s benefactors and friend Phil, managed to pull that off for us! What an amazing meal. We had steaks, lobsters, shrimp (hey, we’re not Kosher), mashed potatoes, chicken, green beans, bread, cream corn, two cheese cakes an two bottles of wine! We’ve never eaten such amazing tasty foods.  Needless to say, it lasted many days and our tummies were well nourished thanks to these wonderful people. We shared our meal with some friends and also our nurses.
Right after Christmas we had the most enjoyable time as a family. We had been given a photoshoot by an amazing photographer named SIGAL! We happened to meet her at a cafĂ© around the corner from U.C.L.A.’s Hospital. I’m not quite sure how we started chatting but by the end of it she gave us her card and we were making a date for the photoshoot.
Sigal was amazing. She was so incredibly patient with us as we tried to maneuver around Leah’s machines and transporting her from her room to the living room area where the photoshoot was to take place. Frani was having a blast the night before choosing all the wonderful outfits for the shoot. We really had such a fun time with Leah. It was such a family day for us. Despite the fact that Leah was connected to so many machines and despite her sedation, it felt so good to be able to have a day where things just felt “normal” for lack of a better way of describing it. We were doing what most families do with their cute kids and taking pictures. Leah behaved amazingly and never had any issues with anything for all the hours of her shoot. Sigal eventually posted some of the pics on facebook. We were so taken by these pictures.  Thank YOU Sigal!!!! 
New Years was a little rough on us. We didn’t really have nurses and we took shifts taking care of Leah. Something we are now finding we have to do since the Nursing company hasn’t figured out they need to find a substitute nurse! But that’s another story.  Leah was still heavily sedated and I found myself praying harder than I ever had. I guess the lack of sleep was affecting me more than I would’ve liked to admit. I kept looking at Leah and hold her tiny trembling hand. I recited the prayers I was taught in Hebrew School. I’m not really that religious, but when you are in desperate need of miracles for your baby you do your best to make a better connection with The Eternal. I tried desperately to find a prayer I could remember correctly in Hebrew. I guess in the end,  I opted for good ol’ English. Frani was cooking and getting things ready, and it was just me and Leah. I began to think about all the supporters around the world that showed our Leah so much love. People from all religions were writing us now. Hundreds upon hundreds were telling us that they too were praying for her. The love for Leah went beyond religion. We had Muslims, praying for her and asking their Imam’s to say a special prayer for her. We had Catholics praying and having masses around the world and at the Vatican. We had one family make the trek in a winter storm to go to a Church in Canada where a Saint who had been given the gift to heal was buried. They even sent us a pic and video. Mormon’s were joining the fight too. Pentacostals, Charasmatic Christians, Methodists, Lutherans, Pagans, Coptics, and Jews; almost every major religion was now represented in our circle of prayer warriors! How amazing it was. No one cared whether we were Jewish or not. They prayed despite whatever faith they followed, because in the end they knew who they were praying too and why, and for that I love them all. With that in mind; knowing that I had the backing of all those people praying for Leah, I imagined all of us holding hands around the globe; our eyes closed and concentrating on the power of prayer.  All-of-a-sudden, I felt an amazing sensation throughout my body. I cannot truly describe this to you since I had never felt this before, but I would like to think it was indeed the power of prayer at work. I turned to the machine that read her heart rate and oxygen level and it was at the best place it had ever been! Leah’s tremors temporarily were stopped. You can think whatever you want, but I know what happened that night.
For those of you reading this, please continue to pray for her. As I tell Leah’s supporters, it’s not about sending  money to help out, it’s about prayers too. Even my Atheist friend said to me, “I don’t pray, but I’ll do it for Leah.”  Leah, my beautiful Leah, if you only knew how much of an impact you are having in this world.
Frani’s turn to write.Part 2 will come tomorrow! We still have so much to share.

Leah, hooked up to her EEG

 Chillin in the PICU
 "Nana" comes to visit Leah
 the 3 Esquenazi ladies (just 1 missing, Debbie)
 Makin' latkes on Channukah!
Our mini menorah
 Lighting the candles and saying the prayers with Rachel
 Love!
 Photoshoot!!

 Leah, being FIERCE!
 Sigal, Leah's amazing photographer


WHAT THE  DOCTORS AT CHILDRENS HOSPITAL SAID
GLOBAL SUPPORT FROM STAR WARS FANS AROUND THE WORLD INCREASES,
IN THE MAKING: THE PRINCESS LEAH FOUNDATION
MY SON NIC MOVES TO LOS ANGELES