We had a wonderful weekend around here gearing up for the addition of a new therapy for Jacob. This therapy is called the Gravity Assisted Environment and was developed through a partnership between The Institutes for the Achievement of Human Potential and NASA.
The device is a track from which Jacob is suspended in the crawling position that allows his movements to easily result in forward motion without the burden of holding his own body weight! Sounds pretty simple…until you try to build it!
Enter Bryan!!
When we were in Philadelphia, we had a great opportunity to try out this device. Jacob loved it and we were thrilled with its possibilities to link his enthusiastic efforts with successful motion. We had a chance to take pictures of their examples and see some pictures of devices other parents had built. However, it was up to Bryan to make it a reality in our home.
He researched, planned and built a truly incredible tool for Jacob. I am so incredibly proud of his talent and dedication! We sure are lucky!!
We have seen incredible improvement in Jacob’s mobility in the last 2 months and I am so eager to share how this new tool helps him progress further. Stay tuned!!
I’ve written a lot about what happened to our family, what happened to Jacob and Logan. One topic I have not yet addressed is why.
Through a lot of research and asking lots of questions we have uncovered that the bottom line is my cervix failed.
There is a sphincter at the top of the cervix whose job is to keep the cervix closed and hold the baby safe inside. Only after a lot of work by the baby, and a lot of pain, will it open to allow delivery.
However, in my case, it opened effortlessly. There was no warning. There was no previous circumstance that would have rendered my cervix incompetent. It was simply a congenital flaw in my anatomy that could only be diagnosed once it was too late.
It has taken me a long time to stop blaming myself. After all, it was my body that failed my boys. But, I do really know, that it is not my fault. God put me here, in this exact place, for His purpose.
So, what now? Is there any solution? The answer is YES! However, surprisingly, it is not standard protocol for women like me.
Typically, in cases like mine, a pregnancy following loss or extreme premature birth would be monitored closely with a back up plan of a vaginal cerclage. This type of cerclage is a stitch placed through the cervix and is tied like a purse string to keep the cervix closed. It is usually placed as high as possible, but the surgeon can only reach about half way from that access point. The problem is that it is only about 80% effective…and that only at taking a pregnancy to viability, or 24 weeks, not the full 40.
We know all too well what happens when a baby is born that early. That plan was simply not an option for us.
Luckily, I was introduced to a group called Abbyloopers. This group serves to discuss transabdominal cerclage, a specialized procedure for the treatment of premature delivery due to the condition of Cervical Insufficiency, or otherwise referred to as Incompetent Cervix.
A transabdominal cerclage differs from a vaginal cerclage in very important ways. First, it is placed at the very top of the cervix. This prevents any funneling from occurring. Second, it is around the cervix, not through it, so there is not a risk of tearing the cervix. It does requires an abdominal surgery, which does carry risk, but this is what gives the surgeon access to place the band in the proper position. Finally, because the cerclage is permanent and prevents dilation, delivery must be performed Cesarean.
The most important difference is that the transabdominal cerclage is nearly 100% effective at carrying a pregnancy to TERM! It can be placed before becoming pregnant and it can be used for several pregnancies, including multiples.
As I previously mentioned, this is not standard protocol. I couldn’t imagine why. Luckily, there are amazing surgeons out there who are very skilled at this procedure and advocate for women and their families who are not willing to risk the lives of any other children.
If you know anyone who has a similar story to ours, I highly recommend they visit Abbyloopers.org. It is a great place to get information, advice and support.
I am very proud to say that in June 2013, I became an Abbysister! Boy, was that an adventure, and extravaganza really! But that is a story for another time.
I was thrilled to stumble across another mom’s blog article about the work of IAHP this weekend. I know there are so many other families out there, but since the goal of IAHP is to help as many children around the world, not just in the US, it is a treat to find a family who has done the work and reaped the rewards right around the corner.
We see amazing progress in Jacob every day, but we still have a long way to go. However, we know we will get there. Jacob does things on his schedule…he always has. In the meantime, we will enjoy the smiles, laughter and ever increasing chatter!! He is so amazing!!
We are not the only ones that know about IAHP. Adrian knows about them and you do too. Do you know someone who needs to know about them? Please enjoy my first guest post from Adrian!
I know some people who can do some pretty amazing things. Seriously, amazing things. Like making blind children see. Making children walk who had never walked before. You know, boring, everyday stuff like that.
Take this man. Looks a little like Santa Claus, doesn’t he? But he gives kids a gift that is much better than mere toys. His name is Glenn Doman and he has devoted his entire adult life to the treatment of brain injured children. Not just his own life, but his wife and at least two of his children have followed him into this field – (maybe all three, I can’t remember). That’s a rare level of dedication. He’s in his 90’s now and I haven’t seen him in a decade or so, but if I know him, he’s still going – as much as he can do. You can’t retire when you’ve got so many injured kids and their parents who need you.
I’m sure you’re wondering why you’ve never heard of this program. I am too. Isn’t it funny that we live in a world where everyone knows everything there is to know about Lindsay Lohan, Charlie Sheen, and Brittney Spears, but you don’t hear about a tiny little place in Philadelphia called the Institute of the Achievement of Human Potential (IAHP.org) that is doing these wonderful things. Although they aren’t just in Philadelphia any more. They are in Japan and Spain, and about 5 other countries.
Here are some actual numbers from their most recent report – out of 278 blind kids that were seen in a 2 year period, 236 of them are now able to see and 194 of them can see well enough to read. That’s an 85% success rate. Sounds too good to be true, but it’s not a hoax, or a gimmick, or a scam. What is it? It’s a lot of hard work, mostly by the parents of the kids.
To get a child to see, the parents do something very simple – they take the child into a dark room and they take a $2 flashlight and they turn it on and off. And on and off. For about five minutes out of every hour. For 10-12 hours a day. 7 days a week. 365 days of the year. Plus a bunch of other exercises – all day, every day. Yes, it is a drastic amount of work. But if your child is facing a lifetime of blindness, how much is too much?
Seems completely bizarre doesn’t it? No one ever thought to shine a flashlight at a blind child. Why bother if they can’t see? But that’s just the point. There’s a natural law about the body – form follows function.
If you run long enough and hard enough, you’ll have the body of a runner. Seen Biggest Loser lately? If you do ballet for enough hours of the days for enough years, you’ll develop the body of a ballerina. If your brain senses a light shining in your eyes hundreds of thousands of times, it will slowly, gradually build a new pathway to the optic nerves. Weird, huh? But it’s worked for all these hundreds of kids. And not just blind kids – autistic kids, ADHD kids, children with Downs system, and disabled adults as well. They have done some groundbreaking work with stroke and epilepsy victims. It is a rare child they are not able to help in some way.
Check them out – I guarantee they are MUCH more interesting than Lindsay Lohan! Their books are in every bookstore, just search for Glenn or Janet Doman, and their website is IAHP.org. If you are the parent of any child – healthy or not healthy, I guarantee you will learn some things that will amaze you and might change the course of your life.
If you enjoyed this post, consider becoming a subscriber – my posts will be sent directly to your inbox twice a week. Click here to subscribe.
You may have seen a picture in the last post from the March of Dimes event that was a blurry image of some typed words. If you worked extra hard, you may have even been able to make out those words. Even though those words were mine, the story was ours, they appeared the same to me the moment I saw them…distant and blurry. It is not that I was having a visual problem or, perhaps, started the wine a little early, it is just hard to believe, sometimes, that it all really happened.
It feels so long ago that “everything happened.” I often say it was a lifetime ago, but that is surely an understatement. If I remember correctly, I wrote those words as the intro to our CaringBridge site that we used to keep friends and family updated for the first year. It is so strange to even imagine being in that place at that time.
Flash forward to today…we are so blessed with our amazing fighter. We have incredible plans and opportunities on the horizon and we have incredible new people in our lives. But, for today, here’s to the memories…
Almost a year ago, my husband, Bryan, and I set off on a trip from our home in Northern California to my hometown of Bloomington, IL. We were expecting twin boys and my family friends were throwing us my first baby shower. However, 2 days before the shower, 2200 miles from home, I started experiencing some concerning symptoms and went to the hospital to get things checked out. The doctors found that I was 90% effaced and 1cm dilated. I was put in a helicopter and flown to the nearest hospital with a NICU.
Because my babies had not yet reached viability (24 weeks) I was given very bleak expectations. The amazing doctors at St Francis in Peoria, IL gave me medicine to delay labor and put me into Trendelenburg position (lower half higher than upper half) and there I stayed praying that my boys would stay safe inside as long as possible.
It worked, I was stable. My husband flew home because he had to return to work and we planned to have him visit every few weekends until the boys were born. However, the evening of August 3rd, I started having contractions and they couldn’t be stopped. I called Bryan at 3am and told him he needed to get back to Illinois as quickly as possible.
On August 4th, at 7:52am, Logan Robert was born at 23 weeks 4 days gestation. He was only 1lb 3oz but he survived. The doctor was able to keep our other baby, then known as Mac, of Mac and Cheese, in my womb where we prayed he would stay. I went back into Trendelenburg and Cheese went to the NICU (don’t worry, we officially named him Logan once Bryan arrived that evening).
The next 48 hours were a whirlwind. Bryan made laps between the NICU and L&D units bringing updates on our sweet miracle day and night. He never actually slept. One of our nurses finally gave him scrubs since he didn’t have clean clothes and even brought him Tshirts as our stay grew longer and he hadn’t had a chance to pack appropriately.
Again things seemed stable…
The evening of August 5th, I started having contractions again. My body couldn’t hold Mac in any longer. At 12:26am on August 6th, Jacob Bryan was born at 1lb 13oz, 23 weeks 6days gestation.
With both boys now in the NICU, we began life in a world we had never really known existed. A world where things aren’t really one day at a time, but one hour or one minute at a time. A world where they say “don’t get too high on the highs or too low on the lows” and “it’s a marathon, not a sprint.” A world where miracles happen every day and God’s grace is everywhere.
Thursday night we were honored to serve as the Ambassador Family for the local March of Dimes Signature Chef’s Auction gala. It was such an incredible opportunity to share Jacob’s story and raise awareness of the real lives saved by the discoveries supported by the March of Dimes. For those who are not aware of their mission, the March of Dimes funds research to prevent prematurity and help those born too early survive and thrive. Boy, do we know a thing or two about that!!
Jacob captivated the entire audience and even earned 4 standing ovations! To top it off, following our presentation was “Fund the Mission.” This was auction style, straight donation forum where $21,000 was raised for the March of Dimes in just minutes!! Way to go Jacob!!!
Check out our presentation! The first video is the amazing creation of our new friend Henry. He cut and created this from 2.5 hours of video and over 200 pictures…all in a week!! It was used to introduce our story. The second video is my speech…please forgive the visual quality. We hope to have the professional version uploaded at some point. Henry says “make sure to check the setting (the little gear icon) once the video begins and make sure 1080p is selected for best quality.” So, without further ado…
This is a feat that has been long awaited!! Our sweet little boy has FINALLY hit 20 lbs!! He has been a great eater since he got over his little post-Philly bug and we couldn’t be more thrilled.
As we were preparing for the trip, we reanalyzed his diet and found that as we had been so focused on maximizing his calories per ounce, we fell out of balance and were giving too much fat. As a result, he was throwing up way too often. Just think of the last time you ate a bowl of overly buttery alfredo pasta or something else with a lot of fat. It makes your tummy feel yucky, right!? Well, that is what was happening to Jacob.
Thankfully, we caught it and fixed it. He has been a fantastic eater ever since. In fact, today he hit 1289 calories and he has been eating 33-35 ounces per day for the past several days! Boy, I sure hope I didn’t just jinx it.
After a baby is born, most moms delight in having a plump, sturdy baby plopped down on their chest. That was not our reality. Since Jacob was born over 16 weeks early, after he was born, he was whisked away to the Neonatal Intensive Care Unit. It was over 2 weeks before I got to hold him for the first time and when I did, although my heart and arms were aching for the moment, I was terrified.
For those who do not know our whole story, Jacob and our angel, Logan, were born when we were visiting my parents in Illinois…2200 miles from our home in California. Bryan had to return home once things were stable to go back to work and I stayed with Jacob in Illinois.
I remember the day I held Jacob for the first time like it was yesterday. He was so SO small. He had an IV, PICC line with several ports, sensors and, of course, oxygen. He had just made his first attempt off the ventilator and had been stable for long enough that the Neonatologist felt he was stable enough to give “Kangaroo Care” a try. “Kangaroo Care” is when mother or father hold the baby skin to skin. It is proven to help regulate temperature and heart rate and is very therapeutic to both parent an child. After all, they’ve been through A LOT to get where they are.
Again, I was thrilled to finally hold my baby, but also terrified. He was only 12 inches long and had emergency bowel surgery only a week earlier. To make matters worse, Bryan was back in California, so I couldn’t even share the experience with him. Although, we certainly tried. Unfortunately, technology failed us and we couldn’t connect the FaceTime to let him watch it all. You can hear him in the video running around trying to find a solution. His tone may sound rough, but he is just frustrated things are not working out. We made the best of it and had wonderful helpers video the whole experience. I share it with you now. Our sweet little fighter when he was so small.
Wow!! What a month it has been! I didn’t mean to fall so behind on the blog but we just got so busy with our revisit to IAHP. Before I begin, I must extend a HUGE thank you for all the support we have received through donations and our fundraiser. These revisits are absolutely critical to Jacob’s development and we couldn’t do it without you!!
So, without further ado…
Jacob’s Evaluation and New Program
The first day of our revisit is when Jacob’s progress is evaluated. The specialists at IAHP essentially walk through Jacob’s existing program to see how he does. They also measure him to see how his has grown. Then his progress is compared both to that of a well child during the same period and to Jacob before the program. So how did he do?
Intellectual growth – Jacob earned both his Seeing and Reading victories. The Seeing victory means that he now has appreciation of detail within a configuration. We saw the Ophthalmologist who examined Jacob at the last visit and he was very pleased with Jacob’s visual progress. We even saw Jacob track an object! It is one thing to have the ability to focus on an object, it is quite another to follow it as it moves through space! His Reading victory is equally exciting! This victory means that he has demonstrated the ability to read at least 100 words. Whaaaat!?! This formerly blind 2 year old can READ?? YES!!! It is no surprise to us as it is something we work on every day. But, how do we know? Well, we brought samples of Jacob’s reading cards which have single, LARGE print words. We held up 2 words and asked Jacob “which one says Corvette?” or “which one says banana?” Jacob would then look at the words and focus on the correct word. He did it correctly all 5 times!! So, we have shown Jacob over 200 words and he got them 100% right, therefore we can surely conclude that he can read at least 100! Yipee!!
Physical Growth – Jacob is getting SO close with his crawling. I realize that I have not yet completely explained Jacob’s physical program but I promise to outline it one of these days. The bottom line is we are all very proud of Jacob. He is clearly demonstrating that he has the ability to move his body in the necessary way to move, he just needs to put all of the pieces together.
His new project will do just that. We will continue to give him plenty of opportunity to move and we will continue the patterning to show him the proper way to move. We will add a “gravity free environment” and a “gravity assisted environment.” The Gravity Free is like a bouncer on steroids. It’s purpose is to develop the vestibular areas of the brain which are responsible for balance and integration. The Gravity Assisted will suspend him in the crawling position and will support some of his weight while allowing him to still touch the ground . When he moves his arms and legs, he will make progress easily. He got to try it out in the mobility room and he LOVED it. He just took off!
When a child has physical obstacles, gravity becomes their worst enemy. In 1976, IAHP began working with NASA to develop programs for our children. In fact, Dr. Ralph Pelligra, Chief Medical Officer of the NASA Ames Research Center, is still on the board at IAHP.
Lecture – Tuesday and Wednesday were jam packed for Bryan and I attending lectures. IAHP takes their education VERY seriously. Every single detail is meticulously planned. The auditorium was built to be the ideal learning environment. It is even kept at a brisk 63 degrees because, as discovered by IAHP founder Dr. Temple Fey, the lower the ambient temperature, the less oxygen the brain requires and the easier it is to obtain and retain new information. The speaker presents for exactly 50 minutes and, when the bell rings, they will stop, mid-sentence, and we take a 10 minute break. At the end of 10 minutes the bell rings again and they pick up right where they left off. At this visit we reviewed intellectual growth, physical growth, social growth and physiological growth.
In addition to learning about the Gravity Free and Gravity Assisted environments, we also reviewed the effect of food, chemicals and the environment on health, behaviour and the brain. Further, we learned how Applied Kinesiology can be used to help our kids. The Chiropractor and Applied Kinesiologust on staff at IAHP evaluated Jacob and made recommendations that we will follow to further his progress.
Jacob with his advocate Suzy
IAHP takes social growth and development very seriously and we were thrilled to have our first lecture on this topic at this visit. The IAHP plan is called “The Law” and, like most of their programs, it takes behavioral issues right down to the basics. It is a simple plan of making very clear rules with appropriate consequenses. This will surely come in very handy as Jacob gets older, but for now maybe we can use it to keep Bryan in line (haha!)
The final day of Lecture was focused on Intellectual Growth, joyousness of reading, the auditory pathway, communication and language development. We learned about the impressive tool of Facilitated Communication, invented by Rosemary Crossely in Australia. We are currently using a choice board with Jacob and will be advancing from a simple yes/no board to more sophisticated communication with more options and better questions. Later, we will use a letter board to aid in our communication and if necessary, we can also progress to using acomputer. This will certainly not replace speaking and developing language, but it will help Jacob communicate with us while we work to understand what he is saying. The examples of written work produced by the children of IAHP using facilitated communication is just astounding!! As they always say, brain injury does not limit a child’s intelligence, only the child’s ability to express that intelligence. We know Jacob is a VERY smart little boy and he proves it more and more each day.
Other Fun
Although we have very little free time during our trips to IAHP, we did have a wonderful opportunity to get together with Bryan’s sisters.
Jacob with his Aunt Darlene
We went to center city Philadelphia and toured all the sites. It was a lovely day, although Jacob slept through most of it.
We are so grateful that they were able to make the trip in to see us! During the week, our days often run very late. However, we were able to get together with our wonderful IAHP friends, Ryan and Catie Lewis. Their daughter, Cate, is about Jacob’s age and is doing incredibly well on the program. You can check out Cate’s story at www.injuredtoincredible.com
Phew! That was a lot. Again, I apologize for the delay. I look forward to sharing so much more. Thanks for following and remember, if you would like to receive and email when I post, click the Follow by email button at the top right side of the page!
defyingthediagnosis 