Thursday, October 20, 2011

8 months old already!! + Genetic Test Results

Hi all,
I know it's been a while, things have been very busy lately, as always.
Leah turned 8 months this past Monday, and we can't believe she is getting so big! She's at 14 pounds now, and continues to grow out of her clothes very fast. She's been doing a lot of great stuff like trying to get on her knees, while she tries hard to lift her head, when she's doing tummy time. She has been keeping her head up when she's on her tummy, though she still lacks some control, and has some of the spastic movements, but compared to how she was doing 2-3 months ago, she's improved a lot. She's also starting to turn onto her tummy, and and from her side to her back, which is also really great.
We took her back to Dr. Bill's office last week to pick up her custom made glasses, but they didn't quite fit properly so we're taking her back next week after they've modified them and fir them again. Hopefully they will fit better this time and she can start to see better as well.
She's continuing to receive her vision therapy twice a week as well, which we think is helping.

She has been a bit sick, we think she may have another bug of some sort or possibly an infection again. We took her to the doctor yesterday and they took some blood and trach samples to culture and see what she has. We're hoping it's something that can be treated with a respiratory antibiotic as opposed to the recent antibiotics that she;s gotten by mouth. Those always give her diarrhea and then she gets a rash, and it's just a vicious cycle. She hadn't really been sleeping well since Sunday night until Wednesday and that is what prompted us to take her to see the doctor. Her sleep cycles were non existant and I think she slept a total of 4 or 5 hours in almost 4 days, so we tried giving her melatonin, which is a natural chemical your body makes to induce sleep. She's been on it for a couple days and it seems like it is helping. On top of everything, she's also teething like crazy. She hasn't gotten any teeth yet, but it seems like she's very close, and I think she has some bottom teeth that are starting to come in.

We also will be sending her medical records to some other doctors that our pediatrician has recommended. The neurologist at CHLA is one of them, but he has no appointments until March of 2012!! So, we're on the cancellation list also. We got the results back from the genetic test that they did of her whole DNA sequencing. They did not find anything remarkable that could give them an idea of what she has. They did find about 400 mutations which is normal for anyone, since we all have different genes. But, they compared all the genetic markers for basically all the disorders that they thought it could be and the ones that match her symtoms, and none of them matched hers. So, we're back to square one, as far as knowing what the hell is going on. We're determined to find answers, even if that means we need to change our team of doctors at UCLA and find other hospitals or groups who can help. However, with our insurance plan it's a bit difficult to say if we'll be covered if we do that, so I'm looking into what other plans my job offers and weighing in if we can get a better insurance plan.

Well, I just wanted to give a quick update, since I know it's been a while, but I'll post more soon, and I'll post pictures too, I promise! You can get more recent updates on Leah's Facebook page

Thank you to everyone who has helped us with donations as well as those who leave us comments and send us caring messages on our blog or FB page. Every little bit helps, and even if people don't donate anything, it's nice to know that you're all praying for our little princess and our family. Your prayers give us strength to keep going, thank you.


Thursday, October 13, 2011

Leah's progress, Daddy becomes Mr. Mom, and Mommy juggles work and baby.

Our 501st friends in Tazmania helping support Leah !
Leah gets fitting for her new glasses while daddy and mommy look on.
My son Nic meets his baby sister for the first time.
Leah on a recent outing with mommy and daddy. She's ready to go!
Leah doing some Physical Therapy!
A recent article in Star Wars insider.
These helmets were made by Nick Bishop of Tasmania and 501st Member. Steven Sansweet is one of many that are signing these helmets to be auctioned off for Leah's Charity event.
Nick Bishops Creations with all the signatures on them.

Hello everyone. It's Leah's dad this time. We have so many things to add to the blog that I was tempted to just make a video of my own,but I hate being on camera and 2) I'm too lazy to set anything up. Yep, it's this thing called "tired".

I want to start off by letting all of you know how much we really appreciate your prayers and hopes. It's been a series of bumps along the way, and all of you have managed to keep up with us here and on Facebook (Leah's page is "MAY THE FORCE BE WITH PRINCES LEAH"). I try on FB to keep you all posted and we thank the 4,000 plus supporters as well. It means a lot to see your posts and all the wonderful things and advice you have to give. We are still so incredibly overwhelmed by the amount of support we have been getting from all of you. As I have said before, for us it's not just about raising funds but we DO appreciate all your prayers. We sometimes get emails from people saying they don't have anything to give and it makes us feel a little bad that they even think they need to give anything for us to appreciate their concern about Leah. So KEEP PRAYIN'!

I'll try to condense some of the news (but that doesn't always work for me LOL).


As you know already, Leah doesn't feed like most babies do. Because of her Trache and her movement disorder, Leah has to eat from a tube that goes directly to her stomach called a G Tube. It can be a little inconvenient when trying to get from one place to the next. She was put on continuos feeds. Leah also happens to have a stomach that is around 50% smaller than most babies. Recently we went to the Gastro Doc to get what they call a "Mickey" placed on her tummy. What this does it allows for you to close the G Tube area up sort of like a cap on a bottle. It allows for more mobility. She was later placed on Bollus feeds in order to help expand her tummy to normal size. In all honesty, it's still very hard for me to see a hole in my daughter that doesn't belong there. Actually two holes because of the Trachea she has on her throat. I try not to pay too much attention to that, but it does hit me hard sometimes. The placement of the "mickey" went fine. We like that she has one less tube we have to worry about. She still needs to be connected to a tube but now when we want to disconnect from as many machines as we can to play with her its a lot easier.She continuos to be on Formula (quite expensive). And we are seeing her gain weight (which is a good thing too, since she was really skinny and in need of more nutrition as well). She is close to weighing 14.4 pounds!

NURSES: The Good The Bad The Ugly!
Well, it seems that after a series of bad situations and incompetence with nurses, we have finally found a group that seems to be working well with Leah. We got Betty back. And apparently Nurse Betty has a lot of fans too. We got a few emails from some of you talking about how you loved Betty and hoped to see more of her in our "Day-in-The Life Videos". We were a little sad when Betty had to go and find another job due to the fact we were "stuck" in the I.C.U. again waiting for the Medical Rental company to find 1) A Ventilator and 2) a trainer. As we stated we had to wait for them to get their act together before we could be released from the I.C.U.. But, she's back and we're happy to have her as part of the family again. We also found Jane. She takes the days Betty doesn't work. She's a wonderful lady who's heart is always in the right place. She's currently trying to adopt a special needs child who is waiting for a liver transplant! For now, we have her as part of the team. Then, we have Tom the night nurse. I can tell you, we feel safer with Tom here at night. Tom is a Vietnam Vet with 8 children! He's was a single parent for many years and knows who to care for our daughter. He also has a lot of great advice for us regarding children. Then we have Jen who is a back up and is really amazing too. She's also been an I.C.U. nurse in the past! So our prayers were answered and the nursing team seems to be a strong one. No more crazy nurses.


We had a recent visit with Dr. Rao Leah's Neurologist. She was so happy to see Leah, not to mention all the Team as well! They have become like family to us. And despite the fact that we STILL DO NOT KNOW what is it she has, I know that they have really tried their hardest. At least they found a drug that could help a Leah a bit with her movements.
Dr. Rao was seemingly very optimistic and was glad to see Leah in good spirits. She was explaining to us that Leah's condition (at this point) doesn't seem to be progressing. Which is a good thing. But, we still have to keep an eye out for her since Fevers and really any sickness can elevate Leah's neurological issues. I was happy to hear that at least things were at a stand still and not getting worse. This is not to say that she is cured or that she still doesn't have any problems.

We also visited the Optomologists and they were a little more cautious with us in their report. They noticed that her eyes didn't seem to be getting better, BUT they were not getting worse and they could not give us a prognosis since it is still very hard to tell what Leah can or can't really see. Remember, Leah had cataract surgery a few months ago. So she has Aphakia. A lot of things are based on how Leah responds and sometimes that can be a little hard to tell. Despite being careful they said they were glad that things didn't seem to be progressing for the worse with Leah's eyesight.
In the past, I have volunteered for a school for the blind in Texas and I really got to see how blind kids can "see". They manage very well actually. I still want to try and make sure that we exhaust all efforts in trying to find Leah a way to see again instead of just a blur of color and light.


We went to go see Doctor Bill Takeshita. Dr. Bill, as he is called, is a great guy. He lost his sight some years ago and continuos to practice with the aid of another Doctor. He has developed ways and techniques for the partially sighted to get back as much of their sight they can. He has high hopes for Leah and was gracious enough to give us some good pointers not only about Leah but about life in general. His wisdom was appreciated. He also understood all the hurdles we've been having to jump just trying to get the help we need for Leah. He was so nice and placed Leah under his own foundation so that we could get free help for her eye care. He even designed a NEW pair of glasses for Leah that will supposedly help her a bit better with her sight issues. His staff was nice enough to put us in contact with other foundations and thanks to them we were able to schedule a visit from a Foundation that helps provide Sight Therapy for children like Leah!


We were finally able to start getting some help with Physical and Occupational therapy in the home. They also had high hopes for Leah. Basically they figured Leah developmentally (physically) was around 3 months. She still has issues holding her own head up at almost 8 months. At this point we don't know if she has some kind of vertigo that happens when she hods her head up. They both explained that this was probably due to the fact that she was stuck in a bed for so long at the hospital. I completely agreed with them. Now with her "mickey" in place she is able to disconnect for a few minutes of therapy. I love being a part of her therapy. It's amazing to see her really try her little heart out. Even when she's been sick she tries. Daddy and Mommy believe in YOU LEAH! We really think that all the therapy that she will be getting will eventually help her get to where she needs to be.


Other Neurology doctors are being brought in to help with Leah's "Mystery Illness". Our Pediatricians and Neurologists are always open to hear what other doctors think. There is a very very very long list of diseases and illnesses that we've already tested for (most were fatal), and re-tested. We will be seeing a Doctor at Children's Hospital in L.A.. He is a pediatric neurologist. We hope he'll have good news for us. Honestly, it can be very scary for us as parents. The reason I say that is that every time a new disease/illness comes into the picture (meaning they think it's this or that), Frani and I panic. It can be excruciating as you wait to hear about the results. I've lost many many nights of sleep this way. And despite the results being negative with all those tests, we can't seem to predict the future for Leah. There really is no telling how many twists and turns will happen in the future so we just try and take it one day at a time and thank God we have her with us today.


We cannot tell you the impact the Global Coverage has given our cause. What started (and is STILL GOING) with the Star Wars community of fans has over flowed to the entire world. We get so many amazing comments and emails via this blog, emails and facebook. Truthfully, when I am feeling a little worn and out of energy I read these and it pumps me back up. Strangers have become friends. I think Leah has an invite to just about every nation on this planet! (Well, maybe not every one but it sure feels that way). I have also been loving how respectful people are on her support page on Facebook. We get prayers from Catholics/Christians of all denominations, Muslims, Jews, Hindu's, name it and she has someone praying for her. And WE THANK YOU FOR THAT! What a beautiful thing that is.


Another group of people are aggressively trying to help us as well. They are a group founded by a wonderful Brazilian woman named Mary Farah. Mary managed to get people to join her PRINCESS LEAH's ANGEls! The group is about 208 strong worldwide and has a group within them that is extremely pro-active in finding a cure for Leah. How this happened I do not know, but what I do know is they are making a HUGE difference on a global level. Many of them are members of some of the major costuming groups, like the 501st, Mando Mercs, Dark Empire, R2 Builders Club,and more. PJ REIDEL has managed to organise several Charity events for Leah and has even flown to different events to talk to others at conventions about Leah. Leah is quickly becoming the poster child for children that have un-diagnosed movement disorders. He stresses that because of the fact they are un-diagnosed sometimes they (like Leah) are not able to get the help they need from certain agencies. These events also help raise funds for us. So far their efforts have helped us get a car (ours was falling apart literally), buy the $400 glasses that Leah was wearing (this is not the new pair provided for free as I mentioned before),gas, and air conditioner for Leah since she has problems regulating her temp, formula, clothing, you get the idea. ALL HELP is deeply appreciated. We continue to struggle, and Leah's Angel's continue to fight alongside Leah. I cannot tell you how important these wonderful people have become to us.We are talking house wives, actors, translators, lawyers, costumers you name it they are almost all represented. All funds aside, they are family. Think about it...Why? Some have contacted me that have had problems in the past with their own children, or have had a friend or relative that had similar issues. Others, just fell in love with the Princess. Either way, a strong connection has been made.Although, I am sometimes exhausted emotionally and in other ways, I never will give up on Leah and these ANGEL's re-energize me. Despite it being just a group and posts, they still touch my heart and have the ability to lift me up to a better place. They also continue to surprise my wife and I with all the events they plan and ways they try to get the word out about Leah. They are a blessing to me and my family.
Just recently, a member called "Dutch" flew PJ to Texas to talk about Leah. Stephen Stanton and Rick Fitts (actor and voice over've heard Stephen as Capt Tarking and RIck was on Star Trek) who are good friends of Dutch also participated in this event alongside Kelly Ward and Nick Bishop. Nick flew in all the way from Tasmania to hand two helmets he sculpted for Leah to be auctioned later. They went around Fan Days convention to get signatures from all the stars and also fans that have contributed to Leah's charity funds. That's a BIG WOW there! Let's now forget those costuming clubs too!
Stephen Stanton has been so incredibly kind (and such a sweet and down to earth person). He mentions Leah whenever he can. I have heard him mention Leah on several interviews. And his friend Dutch has been amazing in helping come up with ideas and getting even more help for us. So all-of-a-sudden we don't feel so alone anymore.
Mike Stanton III has made collectors coins, Alex Dosaula for designing Leah's postcards, the Moss family of Singapore for making Republic Commando patches, Tracy and Jon Rains,Liz Martinez, Giovanni for the buttons, GingerSnap,Jessica Painter for making wristbands, Lesley Faraquar of the 501st Legion, Falin Skirata of the Mando Mercs, Joe 'Lord Bruticus' Mignano,and Jimmy Mac of thanks to Jason Watson for keeping the donation page afloat!
There are many others that have contributed to Leah's well being and support from that group that I think I would have to write on another blog/blogs later about. I hope they are not angry at me for not mentioning them on here this time.

Any bit of help is always appreciated.

For those of you that the Star Wars Insider you can read a little about Leah in the latest issue. Many thanks to Mary Franklin at Lucasfilm for that and PJ for letting them know.


All-in-ALL we are very thankful for the fact that despite another recent visit to the ER Leah continues to be a fighter. We thank God everyday for her. Being a dad she has shown so much to me. She has truly been a teacher. I know that I have changed. I no longer worry about things I did before that now seem so incredibly trivial. NOTHING ELSE MATTERS BUT LEAH.
I love my new job as stay at home daddy. It can be tough some days when Leah's issues seem to be throwing us a curve ball, but I'm learning to deal and find my strength from her.
I know it's hard for Frani to be away from the baby when she works but she certainly is involved throughout the whole day making calls when I can't and keeping us afloat and on schedule. She dedicates so much time to her on the weekends as well. She is amazing! We've become even closer (I didn't think that was possible). We feel lucky that her job allows her to have the Health Coverage we need. She's also very loved at her work, and in some ways I think it helps to be away in an environment that is conducive to her success. Yet, I can tell she is torn at times. I LOVE YOU FRANI! We are a TEAM.


Maybe next time I'll figure out how to put some videos in! Frani where are ya hon! LOL