Is Autism Recoverable?

I know this blog is supposed to be dedicated to Savannah, but through the extensive amount of research we have been doing for Savannah, we have come across so much to help our autistic son, Isaiah. I'd love to share this video with you. It has give me so much hope. And I hope it can help others as well. I hope we can be counted as some of the few who are able to recover their children from autism.

"AUTISM YESTERDAY" Autism is Reversible from JB Handley on Vimeo.

MRI

Savannah will have her second MRI tomorrow morning. The doctor in New Orleans wanted a second one done for further clarification of what is going on with her brain and to see what kind of progress she has made since the previous one, prior to beginning treatments.
We were super excited to begin the stem-cell treatments as they looked so promising, but after contacting the facility in Germany, they will not treat any one under a year old. So, we are moving forward with the hyperbaric oxygen treatments first.
A big, BIG, ENORMOUS thank you to everyone who has been so supportive of our little girl. Terrence and I have been completely overwhelmed with so many emotions during this period and are in awe at the amount of out-reach there has been to not only our little girl, but to our family! Thank you all for your support!
xoxo,
Suzi and Fam

Breast Milk

Let me start off by saying that God is amazing!!! He gave us the most perfect food for our babies - mommies' milk! Formula does not even come close to how amazing and perfect breast milk is!
If your baby gets an eye infection, did you know that squirting breast milk in his/her eye is the fastest and best way to heal the infection? Do you think formula could do that?! Hah!
I could go on and on about how wonderful and great breast milk is, but I'm tired, so you lucked out!
Formula is full of a bunch of crap that can't even come close to mimicking what mommy produces! Did you know that most baby formulas contain corn syrup? Ugh... don't even get me started.
As a working mom, it has been a rough road for me to manage nursing my children and working. As a wedding photographer, we aren't often afforded the luxury to take very many breaks, if any throughout the day, no less a 20 minute break to pump in the bathroom somewhere.
I tried the best I could to pump ahead of time before a wedding, and then pump when I got home. It's all about supply and demand though. The boobs know something is up when they aren't being suckled on during a 8-12 hour time period. Your production begins to go down. In addition to not enough stimulation, the wrong diet, insufficient sleep, and stress can also heavily take a toll on a mama's milk supply.
I began pumping for Savannah the very next day after she was born. I refused to let them give her any formula. As healing as breast milk is, I wanted her to have only the best, not even knowing that she had suffered any brain damage at the time.
I pumped and pumped and stored up what I thought was a ton of milk.
I looked tired though, and the doctors took note of this, and told me to get some rest, not to pump during the night. Big mistake. My milk supply began to diminish like you wouldn't believe! Having an infant baby sleep though the night can do wonders for your sleep but it's not always best for baby. They need extra nutrients through the night, plus it helps keep mama's supply up.
Once my supply went down, it has been a struggle to try to get it to go back up. I have tried several things. The tea doesn't work. Fenugreek kinda sorta helped and Goat's Rue has kinda sorta helped too, but nothing spectacular at this point.
I found an amazing organization called Eats on Feets on Facebook! Mamas who are overproducing are donating their milk to mothers who are under-producing. I have gotten a couple of great donations, and have also found someone in Arizona who has 4 children who were all NICU babies, and one who had a similar situation to Savannah. This mama researched all of the best nutritional supplements to take that could help brain development and recovery, like fish oil, CoQ10, sunflower seeds, etc, and took that to help her milk have better nutrients for her babies. Her children are all doing very well, even the one whom the doctors said would never talk or eat.
Breast milk, baby! Oh yeah! The miracle food!
This mom has graciously taken extra supplements like the aforementioned just for my little Savannah and is shipping me 200 ounces that she had saved up. Naturally, she is shipping the milk frozen, packed in dry ice.
We are so excited and thankful to get it! I hate having to supplement with formula.
I gave up with my first two children. After the first 6 months, my supply began to diminish. I just didn't have the right supply and demand. My babies went on formula.
One of the ladies in our church donated her supply of saved up breast milk when Arielle was a baby, so Arielle had a good amount of breast milk her first year of life.
Isaiah was formula-fed from 6 months on. Isaiah also has autism!
We specifically did not have our children vaccinated, because of the amount of mercury in vaccinations along with all of the other crap that is in them that has been known to cause autism.
Well, what caused Isaiah's autism?!?
Answer: I don't know. But, after a ton of research, formula could very well have something to do with it. Sure, you can raise an eyebrow and question how come all formula-fed babies don't end up with autism then? My response: How come I'm allergic to MSG and cigarette smoke while others can tolerate it just fine? If I am around cigarettes for even a short period of time or consume any food with MSG, my muscles begin to ache, my neck hurts, I get a migraine headache and often times start throwing up. I have to lay in a dark, quiet room, and am sometimes just OUT for a whole day or two.
Some people are simply more sensitive than others. I'll tell you what though - autism is becoming an epidemic. 30 years ago, 1 in 5000 kids had autism. Now it's more like 1 out of 110 have autism!!!
Food plays a big role in your child's development! A very big role - it paves the future for their adulthood health as well. Take it seriously, and provide the best nutrients you can for your little ones!
In the mean time, part of Savannah's road to recovery will be taking breast milk, mine plus any healthy moms who are willing to donate!
Oh, and one final thought to close: Poop. Have you seen the difference between breast-milk-fed babies and formula-fed babies? WOW! Big difference. Not just seen... but smelled?!?! *fans nose* The proof is not in the pudding, honey, it's in the poop! The proof is in the poop! Your bowels are a big reflection on how healthy your body is.

Fundraiser - Prime Rib Dinner / Golf Day

So excited about our first of many fundraisers coming up for Savannah!! The gorgeous, gorgeous Paiute Golf Resort has been gracious enough to sponsor a benefit dinner and golf day in Savannah's honor. All proceeds from dinner and golf games are going straight to Savannah's treatment! Just so you know, the Paiute was voted as being in the "Top 12 Best Courses to Play in Nevada” and ranked #1 for Las Vegas. They were also designated as one of the top 50 courses to play at before you die (this is out of all of the courses in the world!).

What a special gift this will be for us!!! So, please help us spread the word and get as many of your friends and family to come out and support our cause.

The details:
When: Thursday, November 18, 2010
Where: The Paiute Golf Resort
The cost for a round of golf: $50 (includes dinner, yes... that's right, dinner included!!!)
Time: Golf starts at 2pm, Dinner registration starts at 5pm.
Dinner alone: $25/person or a table of 10 for $200
Contact: Angela @ (702)395-1700, adyer@lvpaiute.com

The Paiute's incredible chef Todd has a great menu in store, including a prime rib carving station. Mmm mm!
If you have a business and would like to "sponsor a hole" for $100, please get in touch with Angela at 395-1700 or send her an email at adyer@lvpaiute.com.
Donations for a big raffle are also being accepted! There will be great prizes! Don't miss out on this amazing event with a great cause! We are truly so thankful for everyone's support!

Oh, and before I forget here is a little promo video my husband put together for the Paiute a few months ago.

2010 Events by Paiute CineAd from Terrence Lighten on Vimeo.

Here is another little video the Paiute has on there website about golf (not made by my husband).

One Step Closer to Coming Home...

Well, the good news is is that Savannah is a pretty healthy baby and the only thing keeping her from coming home right now is the fact that she can't suck, swallow and breath all at the same time. Not only can't she do this, she doesn't try or seem to have a desire to do so. So, basically we are just incurring some pretty heavy duty hospital bills to have the nursers change diapers and supply her milk through a feeding tube.

This could go on forever like this.

In order to bring Savannah home, she needs to have surgery to have a gastronomy tube (also know as a G Tube) put directly into her stomach, with the tube coming through the surface of her belly. This surgery will allow us to safely feed her at home. With time, and her treatments, we hope that the G Tube will be able to come out after a few months and she'll be able to intake food orally.

We have consented to the surgery, as it is obviously a necessary step to get her released from the hospital.... and then we can begin treatment for her!!! So, even though I didn't want her to have to have this surgery, it is a step in the right direction for getting her some help!

Surgery will more than likely take place tomorrow. Following a week's recovery, and being in the hospital for a total of 7 weeks, our little girl will finally get to come home with us! :)

Stem Cell Treatment

A local pediatrician contacted me with some good information about cord blood and stem cell treatment. Savannah's cord blood was completely damaged at her birth due to the circumstances. Had her cord blood still been good, it could have been used to help her. If you have a healthy baby, you may want to strongly consider banking your baby's cord blood for later in life, should they need it. It has been proven to help children with Leukemia. You may also consider donating your child's cord blood to a family in need. As valuable as cord blood is, it's such a tremendous waste to have it just thrown out.

Cord blood contains something totally amazing called stem cells. Stem cells are some of the coolest cells ever because when injected into the body, unbeknown to doctors, they just immediately begin to go to town at repairing whatever needs to be repaired. Stem cells are cells that don't have a determined role. Like actors, awaiting a casting call, stem cells wait for signals to tell them what to become. Doctors can't tell the stem cells what to do, that's why not all procedures are successful, but the body will determine what the role of the stem cells should be, and usually the stem cells get busy on repairing damage, whatever it may be.

There has been some controversy in the media about stem cell research. I, myself, don't agree with human embryonic stem cell research. This is where human embryos are grown in a lab, and once the embryo is mature enough, stem cells are harvested for research, and then the fetus is aborted.

There is however, another type of stem cell, and that is of an adult. Adult stem cells can be harvested from bone marrow. Come to think of it, I think this is why chicken soup is so healing (because the bone marrow from the bones cooking gets into the broth).

Adult stem cell treatments aren't yet being conducted in the U.S., but here is a pretty neat video about a facility in Germany that is doing them.



Unless Savannah gets any treatment, this is what we have to look forward to for our daughter. *sigh* As parents, you want nothing more than for your child to be happy and healthy. You want to see them walk, talk, run, play, swim, jump - you know - do all of the normal things that we do that we all so often take for granted.

There are so many things to be thankful for in life. Count your blessings.

The history of Savannah - (A review of my pregnancy and her birth)

Terrence and I kept our 4th pregnancy on the down-low until I was about 4 months along. With our prior 3 pregnancies, we were quite vocal and made the announcement to everyone as soon as we found out. However, with our third pregnancy, just within a week of making our announcement, I had a miscarriage. It was so devastating to us, that we didn't want our friends and family to have to suffer in our pain a second time if the same thing were to result with our 4th pregnancy.

After we reached the 4th month, we felt pretty confident that we could share the good news with everyone. We made the announcement on Mother's Day. It was such a good feeling to have everyone share in our joy and excitement.

Not long after we made this announcement, the troubles began. I started spotting. I went into panic mode, as this was how we found out about our miscarriage the last time. After having an ultrasound done, we were told that I had a small blood clot on my placenta. I was told I could continue working but not to overdo it.

On June 5, I was at a wedding, and the bleeding got worse, in addition to turning bright red. It wasn't terribly heavy, but it was enough to cause alarm. Again we had this checked out by ultrasound. Everything looked fine for the most part, except now I had developed a marginal placenta previa. This is when the placenta is close to covering the cervix. A full placenta previa is when the placenta completely blocks the cervix, which, in turn, blocks the baby from being able to be born by a vaginal delivery. I was told that it was normal for many women to bleed lightly throughout their entire pregnancy, and there wasn't much I could do about it.

I was also told that as the uterus grows, the placenta could likely move out of the way of the cervix and everything could be fine, and I might still be able to have a vaginal birth.

Not much longer after this, I caught a cold, and was having a great deal of coughing, sneezing and blowing my nose. While I was still sick, my water broke! We feel that the symptoms of the cold aided in this misfortune. I had this confirmed by a visit with my midwife. She said that our lives would greatly change over the course of the next several months, as I would have to go on a strict bed rest. I followed her orders and remained in bed, only to get up to use the restroom.

After 8 weeks on bed rest, I began to get really stir-crazy. I was alone upstairs by myself all day long. Terrence took the kids over to my mother-in-law's house in the morning and didn't pick them up until 10pm or later some nights. I had a ton of work to keep me busy on the computer, but I felt so empty inside and so isolated. I didn't have my kids, and my husband was downstairs working all day.

I cheated a few times. Yes, I admit it. I was tired of bed rest. I went down stairs, did some walking around when I shouldn't have, cleaned some dishes. Terrence even told me to go back to bed. I didn't listen. My nesting instincts were kicking in like crazy, and I was hungry for attention.

I landed myself in the emergency room one morning after waking up at 4am with a blood-saturated mattress and having passed a blood clot the side of a tennis ball.
I was released two days later, after the bleeding lessened a bit, and given modified bed-rest, meaning that I could get up to eat meals. I took full advantage of this. I perhaps took this too far, and began to help prepare the meals as well. For the most part, I still remained under full bed rest.

Two weeks later, there was more bright red bleeding with contractions. I went in for an ultrasound and was told to take pills to control the contractions and stay on complete bed rest.

Not quite two weeks following this, I began to hemorrhage. We called our midwife for advice. She told Terrence to have me drink some juice to see if I felt the baby kick and call her back in 15 minutes. I drank the juice, and we felt the baby kick. We asked the midwife what to do next, and she said she thought we should go to the hospital. We delayed in going. I had just taken my pill to stop contractions, and Terrence wanted to wait to see if the bleeding would stop.

It didn't.

After lying down on the couch for 15-20 minutes, the clots started to come one after the other. I couldn't change pads quick enough. I slumped over on the toilet and eased myself down onto the cold tile floor. I had no energy to stand. I told Terrence to take me to the hospital immediately.
 
A friend of ours arrived just in time to watch our kids while Terrence helped me to the car. When we arrived, I was beyond weak, and felt that death was all too near to me and my baby. I was praying continuously that God would save us. I heard the nurses talking to me but had difficulty responding and answering their questions. I was so, so weak. Shortly after arriving to the emergency room, I was being prepped for surgery. I was laying on the operating table praying over and over to God. They said there was no time for an epidural, and they were going to put me out using a gas mask, so they could get the baby out as quickly as possible.

Just before they put the mask over my nose and mouth, I asked them all if they would pray for me and my baby. I heard an overwhelming number of voices say, "Yes, absolutely." One nurse came up to me and put her head next to mine and held my hand as she prayed in my ear. That is the last thing I remember before I was out.

When I woke up, I asked how my baby was. They told me she was very sick and they were working on making her stable. They told me that I had a complete placental abruption, something they had never witnessed before. When they pulled Savannah out of my womb she was completely blue and not moving, barely even alive. The placenta lifted right out, it wasn't attached to anything. The placenta is supposed to remain completely attached to the lining of the uterus until after the baby is born. That is what supplies the baby with oxygen. If the placenta detaches, the baby's oxygen supply is cut off.

Hours later, after they had her stable, they let me see her before they transported her to another hospital that had a level 3 NICU.

One of the doctors told me that Savannah had some seizures and if we found out she suffered severe brain damage, the best thing might be to let her go.

Following the surgery, we learned that each minute we delayed in getting to the hospital was one extra minute Savannah was without oxygen.

Savannah is now 4 weeks old. She is still in the level 3 NICU. She has not cried since she was born, and she is still being tube fed. Luckily, she can now breath on her own, but after getting the results of the MRI back, we now know that she suffered horrendous brain damage at the time of birth. Both her right and left sides of the brain have been affected. The doctors are over 90% (if not 100%) certain that Savannah will have cerebral palsy and mental retardation. On a scale of 1 to 10, with a 10 being completely brain dead, Savannah's brain scored a 7. Her brain is also not growing at a normal rate, if at all. It has only grown 1 cm since she was born 4 weeks ago, and a healthy baby brain grows at the rate of 1cm each week.

We have been doing quite a bit of research on treatment programs available to help Savannah and have come across a clinic in New Orleans, led by Dr. Harch. Here are some encouraging videos we have watched that have given us some hope. They have to do with Hyperbaric Oxygen Therapy (HBOT).





We are continuing to do more research, and will be doing as much fund-raising as possible to get Savannah these HBOT treatments. The first set of 40 treatments, done over a 2 month period, will cost $9,000. Savannah will more than likely need 2 full years of treatments, with on-going booster treatments.

We will keep everyone posted with up-coming fund-raiser events, which will hopefully start soon, as we are looking to begin the first set of treatments the first week of December. Donations can be made right here on our blog as well! Thank you so much for your support!