Family time!

We took Leah to the California Science Center to see the Blue Planet in IMAX, and the Ecosystems exhibit! The big screens help her see better with her glasses and it gives her a lot of interesting visual stimulation.
We did have a little scare where she desated to 59% in the car, on the way back, but it was actually due to her coughing really hard, which is a good thing. Typically, she would just desat form the secretions plugging her airway, but this time she was coughing it all up, and because she forces it out so hard, it's difficult to fill her lungs back up, unless we bag her, so she did turn a little blue.
But I was able to bag her and suction the secretions out and she recovered just fine, but still a little scared of course.
She also peed in her diaper today, all on her own without being cathed! I was actually just about to cath her and when I opened her diaper to clean her, she was already peeing and she peed a lot, almost 9.3 oz of urine, so that was really great. I hate to have to cath her all the time.
We did yoga last night and she did some poses to stretch out her quads sand and she was so relaxed afterwards, and I gave her a baby massage with some new natural body butter we got at the farmer's market the other day, it's sort of aromatherapy as well.
This morning she took a warm bath with a bath bomb that my friend Daniela gave me for her from Lush, smelled so amazing, it has rose petals in it. Leah loved it, she was so peaceful and relaxed sleeping in the tub.
She is also having her yoga teacher come over tomorrow morning, thanks Dan Ward Yoga!
I'll update again on the blog with more pics tomorrow
peace and hugs
Frani

PICTURES!

Here we are on Saturday morning when we brought her into our bed

Bath time!

Leah gets a baby facial

At Roxbury Park

Me and my baby girls

Hello Miss Leah!

Update! Happy Earth day!

Hey everyone,
Happy Earth Day!
It's been a while, but here we go...
Leah has been doing ok. We think she still might have some sort of respiratory infection left over from the last one, a couple weeks ago. She had to go back to the hospital to receive some heavy antibiotics through IV, but she's been home for about 2 weeks. We are probably going to send some trach secretions to test for an infection, along with a urine sample too, just in case.
As some of you may know from the facebook page, we've also been hosting our friend Phil (who we met through Leah's FB page and we've known for a little over a year) at our place, since he recently moved to La for work and needed a place to stay while we found an apartment. He was a great guest, helping us out by cleaning around the apartment, and walking Leah's new puppy, Roxy.
The weekend went great! We started off the morning by bringing Leah in to our room, with her travel vent, suction machine and oxygen tank and snuggled with her in our big bed. It was great to be comfy in my bed and hold her in my arms and nap, since we had gotten up at 7 am, we were a little sleepy. After our nurse Richard came over at 3 pm, we went shopping. We had some Target gift cards for Leah's birthday that we had to use to buy her some new clothes, so we got her some summer dresses, since most of her current dresses are too small and are used more as tops. We also got her an adorable sun hat, to protect her face and sensitive skin from the bright LA sun.

On Sunday we woke up early again and she got her very first yoga session! I take a yoga class at the gym at work, and we have a great instructor called Daniel Ward. I really like his class, since it's for all levels and he's very down to earth and just a very positive attitude. I asked him at my Wednesday class what he suggested doing with Leah, since she is in bed a lot and her PT is not really doing much for her. I wanted him to give me some advise on some stretches but he went so far as to give me his email address and offer to come to our home and do a session with her. We set a date for Sunday and he came over that morning and worked with her. It was great to see her respond as much as she could, and I think she really enjoyed it, since she relaxed a lot. He made a lot of interesting points just about how much she can sense and feel, and how yoga can really help her make connections in her body. There are parts of the body that become atrophied if they are not used so, helping her make those connections and try to use them will help her a lot.
He even offered to come over every week and do sessions with her, and he is donating his time, which I was just blown by, since I did not expect that at all. But of course, he's an awesome human being who just wants to share his knowledge and help people, so thank you Dan!! He has 4 little girls, so he knows what it's like to be a parent, and they all follow Leah's page now, so thank you guys for joining the cause! :D

After yoga, we did a little experiment, that I had wanted to do for a while. We put her on her travel vent and brought her into the bath tub, and I got in the tub with her! I hadn't had a bath like that with her since she was a month old, so it was exciting. and boy, did she LOVE floating in the water! I held her head and shoulders so her trach wouldn't get wet, and the rest of her body floated int he warm bathtub. She fell asleep so fast! I was moving her legs around and just let her sway side to side in the water as she floated. It was something very beautful and we are going to be doing that with her every other day before I go to work instead of her usual sponge bath in bed. I did it again this morning and she loved it, of course. Who wouldn't love to soak in warm water and get bathed and a baby facial? Lol, it made me happy to help her feel more comfy.

Later in the day on Sunday, we took her to Roxbury Park, which is close by to us. It was a big caravan, with Leah, Zev, Phil, Roxy, Grandma and I. It was a beautiful day yesterday so I'm glad we went. Roxy got to meet some other dogs(she's still so scared of them) and Leah was laying under a tree, with her glasses on, looking at the leaves sway int he wind. It was a great time, just fun to go out as a family. Even though we had all this stuff, it felt totally normal, which is really what we want for her. To just have a normal life, as normal as it can be, with what Leah has.

We got some stuff in the mail, and we wanted to share it with you all, as well as thank those who sent us letters. We are posting a video right after this post, so you can check that out here:
https://www.youtube.com/watch?v=JQrjDl6CxSY&feature=youtu.be

 Pics from the weekend will be posting soon (I am uploading them all now, so I'll edit this when they are ready)

That's it for now! I'll try to post again sooner than in 2 months, lol
;)

Peace!
Frani

PS: It's earth day today, but we should all think about keeping the earth clean every day. Even if you just do 1 small thing to help, it makes a difference! Recycle, use canvas bags, use metal water bottles instead of plastic, go solar power, but most of all, learn as much as you can about what our planet and how we affect it and share it with others
Here's my share for the day...it's a funny one, sort of..
http://www.upworthy.com/the-one-where-the-weather-lady-starts-telling-the-truth-a-little-too-much-truth-to-be-honest-9

no night nurse tonight

hi peeps,
So, our wonderful night nurse Bianca had to cancel on us tonight her son was having breathing difficulties and she had to take him to the ER, he suffers from asthma, so it seems to have gotten really bad. Unfortunately, she didn't text me until 10 pm, an hour before her shift, so of course it was impossible to find a back up nurse. But it's ok, it's not like we haven't stayed up all night before. We decided to have me take the first shift (11pm-4 am) and Zev gets to sleep a little, then he takes over for the rest of the shift (4am-7am) that way, we both get some rest at least. I actually prefer to stay up late first, since it's harder for me to wake up in the middle of the night. Plus I had a nice warm cup of coffee from Trader Joe's (yummy) and that was more than enough to keep me awake for 5 hours.
Leah has been having a bit of a rough time these past couple of weeks. She has finally been weaned off of the afternoon dose of Onfi (Clobazam) and is only taking it twice a day now, 10 mg each dose. Since she's been on this particular drug for a long time, it's been rough for her and she's been having some withdrawals from the wean. We see more spasms come out, and a couple of seizures, though they didn't last very long and the neurologist said that this is common when weaning off seizure meds. We are going to go see her ketogenic nutrition team next month (they are always booked!), and hopefully they can see about adjusting her formula to make it a bit stronger to help with the breakout seizures as well. We've also noticed that she's been growing a lot lengthwise but her weight hasn't really moved above 22 lbs. in a few months, so it'll be good to see where she is on the growth chart and maybe increase her calories if needed. I think they just haven't wanted to make any drastic changed to her diet while she's been weaning off her meds too, which is why they haven't adjusted it sooner.
In other news, LEAH TURNED 2!!! I almost can't believe it, it doesn't feel that long, yet in a way it feels longer, lol. I'm sure you guys know what I mean. Time is a very funny thing, sometimes it feels like time stands still, and yet 2 years fly by and she's still here, fighting and growing and living. And to think that the doctors told us she wouldn't make it past 1. We continue to fight along side her and have hope that she will beat this disease.
We had a great time at her birthday party, which was hosted by our friend Rebekah and her daughter Miranda. We met her through Leah's facebook page last year, and she helped us get a space at UCLA for her first birthday and this year, she offered her house for the party, as well as got the cake, activities and food/drinks for our guests who were a small group of friends and family, since we couldn't impose on her and invite tons of people. Leah enjoyed it except for in the afternoon where she had a little tantrum because she had to pee, and was getting all worked up. After cathing her and having daddy hold her in his arms for a while, she was taking a nap, probably exhausted from the fit she had earlier, haha.
It was great because  a lot of the people I invited had kids and brought them along, so it was very fun to watch them interacting with each other and the other guests, as well as Leah. One of the kids of my friends Virginia and Brent was watching me as I fed Leah through her G-tube and couldn't stop staring, until she finally asked me what I was doing. "Leah eats through this tube that goes into her tummy. It's really hard for her to eat like you and me with her mouth so we help her by putting her milk in this tube and goes straight to her tummy, see?" I couldn't tell if she understood or was just more intrigued by that, then she asked me what the tube was that was coming from her neck and I told her that because Leah is weak, it's a machine that helps her breath. I don't know what might have been going through her head but I'm glad she got to meet Leah and learn that children who are differently abled exist. Not everyone can run and jump and skip around. I remember when Leah first got sick and I would cry whenever I saw a kid that was "normal", thinking why my baby couldn't be that way, that it wasn't fair, but it's funny, because now I don't think that at all. I don't feel sorry for Leah, I feel glad that I can teach kids that people like Leah are not weird, just different. They are still kids, they still can feel you, and Leah can hear and sense people, I know because I can tell that she is aware still. I think the more we teach them about tolerance and compassion, the better it will be for society in the future.

Oh, and we also posted about this on our FB page, but we are participating in an art auction for Leah next month. People have alrady started donating art pieces for auction with the intent to raise as many funds as possible. Zev and I are still trying to get the Princess Leah Foundation up and running but it will take some initial costs of setting up the business as a non-profit and legal fees, etc. So, we talked and thought that it would be great to also give back to those in need, since we've received so much. We are splitting all the funds 4 ways with 3 other families who have daughters with mito: Izzy, Autumn and Kylee. I've posted their pages here before, but there is a lot more info on our facebook page, so be sure to go there if you are interested in learning more about it. And feel free to message us through FB as well if you would like to donate an art piece to auction. I will probably be painting a few watercolor pieces as well, so be on the lookout for those ;)

Well, I have to feed Leah her 3am feeding now, so I will depart, but I will post again sometime this week. I forgot how good it felt to write
:D
Much love and peace to you all,
Frani

2013 is gonna be a good year, I can feel it!

Hey everyone,
Happy New Year! So far, it's been a pretty good year for us and Leah. We had a little hiccup on New Years Eve, and we had to take the baby to the ER because she had a lot of congestion and was starting to have seizures and spasms again, but we found out that she had a mild UTI which could luckily be treated at home, so we were able to spend New Years at home with Leah, which was wonderful for us.
We saw her neurologist the first week of Jan and made a plan to start weaning her off some of her more sedating seizures meds like Topamax and Clobazam. It's going to be a slow wean, just removing 0.5 mg a week until we get to 25 mg twice a day on the Topamax and then the Clobazam, going down from 10 mg 3 times a day to 10 mg 2 times a day.
So far she's been doing great since coming off the meds, so we'll have to hope that the diet will continue to work as well as it has in the past. We've been able to take her out more and she hasn't had any more UTIs since new years, luckily.
This past weekend was awesome, we took her to the Junior Blind Campus for a MLK day picnic. We got there really late, so it was pretty much over, but the therapists still took as for a tour around the campus and showed us the school for the blind and it was great. Hopefully when Leah turns 3, we can take her there for pre-school. We then headed to have lunch at the mall near by and strolled around with her before going back home to meet our 3 pm nurse.
On Sunday, we got up early and headed to the California Science Center with her, to check out the Ecosystems exhibit. It was so awesome! There was a huge room that was all dark except for the ceilings which had projected videos of all the different ecosystems on earth, with lovely music and sounds effects.. When we brought her in, she had her eyes closed, but the music and sounds were so loud that they woke her up, and since she has new glasses, she was able to watch the giant screens. She was really engaged and could not take her eyes off the images, so I think she can still see something, even though the doctors say she's almost blind. We also took her around to see the aquariums and lizards, which she was also looking at intently, so overall, it was a great weekend.
The Sunday night shift however, was very different. We got a new nurse who was supposed to jhave had 15+ years of experience and we ended up with an emergency situation because of her mistakes.
Here is a copy/past from Leah's FB page, and what happened yesterday morning:
We had a scare this morning with the new nurse who was working the night shift. Leah de-sated all the way down to 9% oxygen! She called me at 6:45 am saying "shes turning blue!" and didn't do anything about it! Luckily, I ran into her room (she was already at 50% O2), started bagging her, trying to figure out why she was dropping so fast, (at this point she was around 25%) I realized there was no chest rise when I was bagging her so I looked to see her trach and the trach tube had come out completely! She was not breathing at all, for a span of about 2 minutes. I was able to quickly untie the trach ties, and try to put it back in, but it wouldn't go back in because we needed lube, so I just dipped the trach in some water and stuck it back in, then started bagging her, at which point her oxygen was at 9% and she was a blue-ish gray color. While bagging her, I called for Zev to dial 911, since she came up but kept de-satting more, so I had to suction her (a LOT of junk came out, so that means the nurse also didn't suction her properly overnight). All the while, the nurse just stood there looking at me, and rubbing Leah's arm. While bagging her, I was so angry that the stupid nurse didn't notice that her trach had been pulled out, that I kept saying "how did this happen?! her trach came out, what happened?!" she kept saying that she didn't do anything and she had no idea how it had come out, and I snapped back at her "you could have killed her!!" Which is completely true, had Zev and I not been there this morning, for whatever reason, this post would be very different. The fire department got there right when I was able to stabilize her, and we decided to take her into the ER, to make sure there was no damage, despite her being back up at 100%. Our other nurse, Desi got there right before the firefighters since it was change of shift, so she came with us to the hospital as well as the night nurse, who I had to ask to leave the room because I couldn't stand the sight of this person whose stupid mistake could have killed my child, and I really wanted to slap her. But, after doing a bunch of blood work/electrolyte levels to see if there was any CO2 poisoning in her blood, or acidosis. She was right on the borderline, which we think might be because of ketogenic diet, but nothing that shows any damage from this morning, thank G-d.
After a couple hours in the ER, we went home and Leah is stable now, but it was probably the scariest situation I've ever been through, and I keep replaying it in my head, thinking that it could have ended very differently. It didn't really hit me until we were at the ER of course, as usual. We've worked so hard to get her to this point and to have someone's inexperienced mistake ruin it all, but Leah is much more resilient than any other human being I know, and today she proved us that she still wants to be here, because event he ER docs told us that it's very hard to bring someone back from such a low oxygen saturation.
This only reinforces my argument that she needs RNs at home and not LVNs or at least LVNs who have worked in emergency unit or the hospital. So, we are going to report her and also try to see what we can do about getting her actually "skilled" nurses.

We received a lot of support in the comments of the post, and I'm glad to know that I'm not crazy and I'm not the only one who thought that this could have been avoided, had the nurse actually done the right thing.
Unfortunately, though, I know that with home care nursing, you can never be sure how someone will react, or how prepared they are to handle these kinds of situations  until they actually happen. Honestly, it scares me to death to know that I could lose Leah because of someone's inexperience. And I agree with everyone who suggested we have a list of questions that we grill the nurses on when they come in for the first time. We might also start just staying up in shift the nights that we have new nurses, just in case something happens, we will be there to take over if we need to or help out. We also are going to start checking the new nurses references, to ensure that they've dealt with emergency situations and know what to do under pressure. 

On a non-Leah related topic, I got a call from one of my aunts yesterday from Peru to let me know that my Grandpa is going to have hip surgery. He's 81 and never really took very good care of himself so he has other issues with his kidneys and artery blockages as well. The operation is very risky and there is only a smaller percentage he'll will make it through and even if he does, there is only a small percentage that he'll be able to recover in post-op. I am traveling on Sunday to go and be with him before his surgery and spend some time with him, and also to be there while he's in surgery and hopefully recovery, just a for a week,since I need to come home before the weekend, since we still don't have a fixed schedule of nurses for Leah. This is really really sad news, since my Grandpa was the only father I ever had. My dad died 8 months before my birth in the Peruvian air force. When I lived in Peru, I lived with him for 4 years and even though he's a grumpy old Irish man from New Jersey, who likes to yell a lot, deep down he's a big teddy bear and a very loving, caring giving person. I haven't had a chance to see him since 2009, the last time I went back home, since it's so expensive to travel from LA to Lima, so it's breaking my heart to think that this may be the last time I get to see him. However, if Leah has taught be anything it's to have hope and believe that the best will come from every scenario. I have hope that he'll pull through, since he's a very stubborn man (I think Leah and I got that from him, lol) but also very strong. He's suffered a lot in his life as well, and he's always managed to get through it, but I know that he's also older now so it's more difficult for him. Either way, I need to go see him, to let him know that he needs to pull through so that he can meet Leah when she eventually gets better too, she can inspire him to recover, I hope. He never got to meet Leah, since he's too fragile to travel and so is she, but I'm going to make him a video so that he can see her and meet her electronically, and also to show him everything that I've done since I left his house, how far I've come, not only in my career, but as a person. 

Anyway, I want to thank all our new followers of Leah's FB page! Your support is amazing and I feel like my family just keeps getting bigger. Zev, Leah and I have truly been blessed for having you in our lives, thinking and praying for all of us.
THANK YOU!!
Peace,
Frani

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:

• 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

Peace,

Frani

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