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.
My sweet little man has the most unpredictable sleep schedule. The only thing we can plan on is that as soon as we think there’s a pattern, it changes. Thankfully, once he goes to sleep he’s usually down for 12 hours…unless there’s something that needs to be done. And, when all else fails, there’s our secret weapon…mommy and daddy’s bed. No child shall resist it’s powers for slumber!!
But just when you thought it was safe to start working on that project…
So, thanks to a special helper, I was able to catch up on some organizing today. Love you, Lolli! Since we are still working on unpacking from “The Great Flood of 2014,” I have plenty of boxes to go through. I came across some trinkets from Jacob’s first NICU, Children’s Hospital of Illinois in Peoria. I cannot say enough about the AMAZING staff there. I promise, we will come back to see you all one of these days. In the meantime, check this out!!
A special shout out to nurse Robin for making this card for Jacob! We love you all!!
An here’s one when Jacob was about 3 months old. I think this was the day of Jacob’s renastomosis surgery. I will write more about Jacob’s 9 surgeries another day. It certainly was taken at Sutter Memorial. What an amazingly tough little guy!
Getting the proper nutrients into Jacob is one of our highest priorities. It makes sense. He must have the building blocks necessary to do all the building we want him to do. However, getting enough calories in is a continual battle. That makes eating quite stressful…for us anyway. Jacob, on the other hand, takes it all in stride. As he does with everything!
Jacob’s diet was designed by the team at The Institutes for Achievement of Human Potential www.iahp.org to give him optimal nutrition. Each meal has a balance of lean protein, complex carbohydrate, leafy green vegetable, green vegetable, another vegetable and a cold pressed oil. We purchase as much of Jacob’s food as possible from local, organic farmers. The ingredients we use are rotated with the goal of not repeating an ingredient within a 4 day period. This is to help identify if he has any allergies. Thankfully, to date, he does not.
While this this meal is undoubtedly nutritious, it takes a large volume to get to the calorie goals we have for him. We have learned a few tricks to help us reach our goal. First, we made changes from the chicken and turkey breast we are used to cooking for ourselves to chicken and turkey thighs. We also supplement each meal with a variety of oils…olive oil, macadamia nut oil, avocado oil, sesame oil, walnut oil, coconut oil and ghee (clarified butter). Finally, our favorite discovery, almond meal pudding.
Thanks to Pinterest, we found a great, super easy recipe for almond (or any other nut) meal pudding. We simply put 1 cup of finely ground nuts into a skillet and add enough water to get to the consistency we like. When it begins to bubble, we temper in an egg and Viola! We later began adding flaxseeds and Chia seeds on an alternating basis for some extra nutrients. Finally, we top his pudding with some fresh organic fruit and breakfast is served. Fresh, healthful and calorically dense!
So far, it is going well. We have a goal of 30 ounces of food a day and we are up to averaging about 25. Each day is different, though. Thankfully, Jacob’s amazing smiles make the stress melt away!
Jacob has been given an laundry list of diagnoses. First came profound hearing loss, then cortical blindness and potential cerebral palsy. We even had someone tell us “your son will never see, hear, walk or talk. No matter what you do.” As you can imagine, we were terrified.
Thankfully, we found The Institutes for the Achievement of Human Potential. www.iahp.org After reading the book What to do About Your Brain Injured Child by Glenn Doman, we knew we had found our hope! The team at IAHP has been working with and successfully treating brain injured children, like Jacob, for 60 years.
You see, all of these labels that he has been given are simply symptoms of the brain injury he sustained at birth. That is actually GOOD news because it can be fixed. Our goal now is not to just live with these diagnoses, but to help Jacob heal and overcome them!
When Bryan and I attended the What to Do course at IAHP we learned a VERY important fact…brain growth can be slowed, brain growth can be stopped AND brain growth can be SPEEDED! The best part is that the research the staff has been conducting over the last 60 year has uncovered just how to do that.
It is really simple actually. The staff uncovered the critical steps in child brain development and what causes these steps to occur. We simply replicate this natural process with increased frequency, intensity and duration to rebuild the damaged pathways. You’ve probably heard of neuroplasticity…well, they have been doing just that all along!
The other extremely important factors are giving Jacob the best nutrition possible so he has everything he needs to regrow the damaged tissue, improving his breathing and creating an environment that is ideal for his development. I will write more about Jacob’s nutrition, respiratory program and what we do to give him the best possible environment in another post.
What this adds up to is a very intense program of stimulation and opportunity in recognition of the orderly way the brain develops. Jacob does therapy all day every day. Every minute is on purpose. At our last revisit, another mom asked me how many hours a day we spend on Jacob’s program. The simple answer is all of them! Yes, its a lot. Yes, it takes a team. Yes, its hard. But, YES, its working! The clearest evidence of this is the change visible in Jacob’s brain via MRI.
This may be hard to understand at first, but just look at the increase in the dark parts of the scan on the right!
So, here we go! Off to prove the naysayers wrong and delighting in every minute of it! I look forward to posting videos of Jacob’s incredible improvement. I welcome any questions and I cannot recommend more highly that everyone read the books written by Glenn Doman and the staff at IAHP. They help both hurt children and well kids!