Whew, I am barely getting in this post under the wire! I promised myself at least one post a month, and boy, has it been challenging with a little one at home! So since we last updated you, we had been going to our ABM practitioner Brendan and had just finished an intensive session in San Francisco with a more senior ABM practitioner. Now, we are on a weekly schedule with our local practitioner, with 4-5 sessions each week. Colin has been responding VERY well to the therapy! His left hand, which usually is in a fist, is now open at least 40% of the time. That is HUGE for Colin. He consistently rolls from side to side, and while we put him on his tummy and he seems to not mind, he hasn't been able to get himself on his tummy. My mommy intuition is that his G-tube (which should come out at the end of November!) keeps him from naturally getting to his tummy on his own. So I'll be curious to see if he starts to roll on his tummy once the G-tube is out. Another thing that Colin loves to do is TALK (just like Mom!). Here is a video of our chatty little guy:
We are also working on sitting up, and we are making good strides! The one place that Colin seems to love trying to sit up is his bathtub. So we have started bringing his tub in his bedroom for him to play in, which he seems to enjoy. He also seems to enjoy water! Here is a fun video of his first time in the jacuzzi with Dad (sorry the sound of my voice is annoying!).
Other than that, we have just been very fortunate to watch Colin grow and make progress (even if it is slow!). I recently learned of another local preemie family who had a daughter born at 25.5 weeks (just like Colin), but sadly, their journey with their baby girl ended a few days ago. If you can take a moment, please read about their story and donate to their fundraising efforts to help pay for the funeral costs. Link for Baby Jade Hood
Although we have Colin's birthday, Thanksgiving and Christmas coming up (whew!), I'm still gonna try to do my best to post once a month, if not sooner. So to make up for the lost time, here are some fun pics from the last month:
I know so many of you have been breathlessly waiting for Part 3 of our journey with ABM. I have said this before, but I will say it again, life moves SUPER fast when you are out of the NICU! So in my search for an ABM practitioner, I was lucky enough to find one 10 minutes from my house. His name is Brendan, and you can learn a little bit about him and the practice HERE. My decision to start ABM sessions was not an easy one. The hard part was the fact that I was choosing to do what most in the medical community had considered "alternative therapy". NO ONE had heard of it, and every time I talked about it, I was usually meet with incredulous stares. Since we had already been working with a Physical, Occupational and Early Intervention Therapist, most wondered if I wasn't happy with the results that I had seen upon working with them. While this wasn't entirely true, a part of it was. Colin was scheduled to see each person 2x a week. Since there were 3 therapists, this would equal 6 visits a week, with most overlapping each other on the same days. Soon, our weeks were spent either preparing Colin for a therapy, or getting him rested before his next therapy. Physical therapy was definitely the hardest. While the therapist meant well, I could soon tell that Colin hated the stretching exercises and tummy time that she would do with him. It would almost seem as if a part of him would mentally "shut down" while she would start to work with him. The one therapist that I felt really connected with Colin was the Early Intervention therapist. Her work consisted of "play therapy". In essence, this required her to just play with Colin to engage his brain in learning about his environment.
However, in order to add ABM, the practitioner advised me of one slight, if not huge, detail. He himself was open to whatever I decided, but the founder, Anat Baniel, STRONGLY suggested that no other traditional therapies were done while receiving ABM lessons. The belief was that the ABM work would engage their brain to a whole new way of thinking, that engaging in traditional therapy would confuse the brain and not allow the new skills to be learned. Stopping all other forms of therapy seemed liked my only option if I wanted to have the best possible outcome with this therapy. When I told Colin's pediatrician that I was considering pausing traditional therapies in lieu of this one, I could instantly tell that this decision was crazy in her eyes. Mainly, most just wanted to make sure that this was not some scam bent on getting as much money from a desperate parent (since it is not covered by insurance or Regional Center, we are paying out of pocket for each session.) But after much prayer and discussion with Rich, we decided that giving Colin every opportunity out there would only help, not hurt him. And as a way to hedge my bet, I decided that I would give this therapy 1 month. If I didn't see any radical improvements after 1 month, then I would go back to our regular therapies. We started our sessions with Brendan in early August. The sessions take place at his home, and for the first one, Rich decided to tag along. We had no idea what to expect, and I guess that was a good thing.
The first thing we noticed was how quickly Colin started to respond to the work. While it doesn't look like much, each gentle movement seemed to awaken something in Colin. Soon into the session, he was babbling up a storm like we had never seen! Below is a recent clip of him having ABM therapy in San Francisco (I'll talk about that in another post!).
One thing that was amazing was after the FIRST session, Colin responded by relaxing his legs!!!!!!!!!! Why do I use the exclamation points with such excitement? Because this was something that Colin simply DID NOT DO before this session. Every time you would pick Colin up in the past, he would react by tightening his legs and back. This brain process was started early on in Colin's brain, and once we started Physical Therapy, it was something that we always tried to work on to stop Colin from doing it. But with the traditional therapies, nothing would work. But with ABM, it was as if his brain opened up and suddenly realized what we were asking of him. At this point in time, scientific work about brain plasticity is in it's early stages, but as a parent to a child with brain damage, I feel that it is IMPERATIVE to educate myself about this field. On an intuitive level, I have determined that getting new connections established in his brain is going to be the ticket in getting Colin to overcome his current physical limitations. And with each subsequent session, I am seeing this develop in his brain, and I know in my heart that this is working. I could go on and on, but here is a TED talks video by Anat Baniel where she explains about brain plasticity and how it shapes her work.
So please continue to pray for us as we go forth on this journey with an unknown destination. Prayers have gotten us so far, and I am excited to see how much farther we will go!
So in our last post, I talked about The Institutes. In this post, I will talk about the other therapy we looked into, The Anat Baniel Method. I was introduced to the Anat Baniel Method (or ABM for short) by many of the other preemie mommies that I have met online. I must say that I am very thankful to live in a day and age where connecting with other people in similar situations is only a few clicks away. So on many of the other Micro Preemie mommy blogs that I read, I kept hearing how many of them were doing a therapy called ABM. What is ABM? In short, ABM evolved from the earlier work of a man named Moshe Feldenkrais. His approach is more a form of self-education through movement as opposed to manipulative therapy that traditional therapies are based on (like physical and occupational therapy). What does this mean? In short, the therapy shows a person (or baby!) how to find their place in space by using movement. (This is the best way I can describe the method without having yet read Anat's book. I promise I will Lindsay!). Anat was a student of Feldenkrais, and she evolved the therapy into her own method that she calls the Anat Baniel Method (named after herself!). Here is a video straight from her website that includes testimonies and a description of the method.
How is ABM different from The Institutes? In short, you can bring your child to a certified practitioner who has been trained by Anat's center up in Northern California. For many of my fellow micro preemie mommies in other states, finding a practitioner was a challenge. For them, practitioner's were few and far between in states on the other side of the country, since it would require that those practitioner's would have to travel to get trained in Northern California, then go back to their home state to build their practice. And since this method is still in it's infancy of gaining acceptance, few practitioner's have discovered this method. In my search for a local practitioner, I was lucky to find out that there was one 10 MINUTES FROM MY HOUSE! Kind of a sign, huh? Each session would be similar in cost to a traditional therapy session, but would not be covered by insurance or our state Regional Center. Still, it was considerably less than The Institutes, and since a practitioner was so close to me, I figured ABM might be our method of choice. I know some mommies in other states who have to travel 4 hours to their nearest practitioner, or even travel out of state, so I feel pretty blessed in that aspect. So what would a session look like? Here is a sample video with a simple description:
While it doesn't look like much, I was told by our practitioner over the phone that in the FIRST FEW SESSIONS I would start to see results. Say what? Needless to say, I was intrigued............... (Part 3 to follow.........)
So in our last post I talked about therapies we were exploring for Colin. When we were discharged from the NICU, we were advised that we should start providing Physical, Occupational and Early Intervention therapies as soon as possible. The medical doctors advised us that this would give Colin the best option to overcome some of the setbacks he had from the NICU and overcome any physical disabilities caused by his brain bleed. As I have mentioned in various posts, in California, the state provides automatic funding for therapies for kids that were born with "An Established Risk Condition". In Colin's case, because he was born so early and suffered a brain bleed, he automatically qualified. However, the drawback to allowing the state to pay for the funding is that they mandate how many sessions they believe would be beneficial for Colin for a predetermined amount of time. For this reason, I decided to go through our insurance for his Occupational Therapy and let the state pay for the other two. I considered Occupational therapy as the most important one, because this was going to help him to transition from using his G-tube to eating by mouth. Well, we soon started all 3 therapies, and all were going good. Lucky for us, Colin didn't need much help with Occupational Therapy, and he switched from his G-tube to eating with a bottle with no problem. Yet over time, I was still feeling like the therapies were ALOT OF WORK. For those with special needs kids doing therapies, you find that your life is CONSUMED with so much time going to therapies, preparing for therapies, and planning therapies. And as you can tell below, sometimes it got to Colin too.
Colin pooping out DURING a therapy!
Colin seemed to enjoy his Early Intervention therapy very much. This therapy pretty much consisted of him "playing" with his therapist. Basically she would show him toys to help his eyes track, or expose him to different textures and sounds, etc. You could literally see his little brain light up with interest during this time. The other therapies really focused on having him meet his milestones for his age, like rolling over, holding his head up, etc. These he usually DIDN'T enjoy as much. He would be polite for the first 5 minutes, then the rest of the time, he would fuss and sometimes cry while he was put into positions he didn't enjoy, like tummy time. Tummy time is done by ALL parents to help ensure that their kids can be on their tummy to hold up their head and eventually crawl. (This is a little info for your non-kiddo parents!) So to make sure were were exhausting ALL our options, we started looking into alternative therapies. We focused on two: Anat Baniel Method and The Institutes for the Achievement of Human Potential. In this post, I'll talk about The Institutes. "The Institutes..." (for short) was recommended by Colin's wonderful NICU nurse Krystal, who has become part of our family and whose opinion we value MOST HIGHLY.
Colin getting some attention from Krystal on his discharge day!
She had known a few families that had gone through this program and had seen REMARKABLE results in their kids. Because she had this first hand knowledge, I was intrigued by what it could offer. In a nutshell, the Institutes was started in 1955 by Glenn Doman. Many of you are probably already familiar with him, as he created the "Your Baby Can Read" program. After working with many patients with brain injuries over the years, the Institutes created a program that they believe can reverse or eliminate the effects of brain damage.
Parents are required to travel to their center in Pennsylvania and complete a weeklong intensive training course that teaches them how to work with their child. The program that the child will complete at home is intensive, and consists of:
Patterning – manipulation of limbs and head in a rhythmic fashion
Creeping – forward bodily movement with the abdomen in contact with the floor
Crawling – forward bodily movement with the abdomen raised from the floor
Receptive stimulation – visual, tactile and auditory stimulation
Expressive activities – e.g. picking up objects
Masking – breathing into a rebreathing mask to increase the amount of carbon dioxide inhaled, which is believed to increase cerebral blood flow
Brachiation – swinging from a bar or vertical ladder
Gravity/Antigravity activities – rolling, somersaulting and hanging upside down.
Once home, starting the program requires 3 adults, completing some of these tasks daily every hour for a certain amount of time. Then the child is reevaluated over time, and the program is adjusted for the improvements. Below is a sample video of what a typical session at home would look like. No need to watch the WHOLE thing, but a few minutes of viewing and you will get the gist.
Here is another video that shows some of the equipment that parents would use at home.
Pretty intense, right? But look at some of the amazing results:
This little girl has similar issues to Colin.
For us, we are VERY fortunate to say that money is not an issue for us. We are willing to travel to the ends of the earth for Colin, no matter what it costs. And needless to say, this program not only costs money (not just to complete the course, but to travel there, buy the equipment, etc.), but would require lots of time and energy on our part. But was this the right decision?............ (Next post we will talk about the other method we were looking into, Anat Baniel Method).
I'm glad I have told myself that writing a blog post at least once a month is good enough. Because taking care of Colin and all of his special needs, while trying to have a life at the same time, has been challenging to say the least. So good for me that I am getting this post in ON THE LAST DAY OF THE MONTH! :)
Well, first off, Colin is HAPPY! I say this because 9 times out of 10, the first question out of people's mouth when they see us is "How is Colin doing?". And while I appreciate the concern, I don't think there is an understanding to what that question is really asking me. Because Colin has SOOO many things that we are following up with the doctor and therapists, asking how he is doing is like asking me how every part in my car is working. There are so many aspects that I could discuss, that I get stuck on how to answer. I wonder, do they really want to know Colin's entire medical progress to date? Or are they just trying to make polite conversation? And sometimes even when I answer "He's fine", I'll still get follow up questions. If I could share with you all what my mind is really thinking, I would tell everyone to first start out by asking me "Is Colin happy?". Because that is the one question that has an easy answer. 9 times out of 10, it will be a resounding YES!
Mom & Dad, I love you!
But since most of you are here to find out how Colin is doing, here is where I can get in depth and REALLY tell you all the nitty gritty details!
First off, Colin is now 8 months chronological, 5 months adjusted. Wow! In another 4 months, it will have been a year since we started this crazy journey with him.
When we first came home, Colin had no less than 6 doctors that he was following up with on a weekly basis, was on no fewer than 7 medications, and used various medical equipment.
Now, we are down to 3 medicines (and maybe even down to 1 by the end of the month!), he uses ZERO medical equipment, and right now, I can't even remember the last time we went to the doctor!
Even with these progresses, we still are facing the possible outcome of Cerebral Palsy (CP for short). This medical condition will have the most impact on his quality of life.
Here are two videos that I think provide a good description of what Cerebral Palsy is, and how it affects the body.
Because CP centers on brain damage, trying to somehow rewire his brain has been a hope and focus of ours.
Science has determined that in the first 2 years of life, the brain is still developing to it's typical fullest potential. While science has also discovered that even past the age of 2 the brain still has the ability to rewire itself (ala Gabby Gifford in AZ) making changes in these first 2 years of life can have the STRONGEST impact.
For this reason, we knew that really focusing on his brain gave us a better chance of fighting off or reducing the impact of Cerebral Palsy. To be clear, at this point in time, his doctors have not OFFICIALLY diagnosed Colin with CP. Because of the 2 year development of the brain, doctors usually like to wait until children have reached this age to say with certainty what type of CP a child could have. However if you saw Colin in person, you can see some possible early signs that CP is starting to affect parts of his body.
Because of these early signs, shortly after we came home from the hospital, we quickly started Colin on various types of therapies to help him reach milestones like rolling over, crawling, etc. While each have had their specific purpose, all of them for the most part overlapped. I may have mentioned these therapies before, but in case I didn't, he was doing a combination of Physical, Occupational and Early Intervention therapies. To get an idea of what we focus on during therapy with Colin, here is another video of a baby with CP (I'm assuming this child is 2 years of age or older). Colin does similar things with his body, and has been doing similar types of exercises. (It's kinda long, so watch enough until you get the gist, or watch it all, your choice).
While each of them seem to make some progress on what his body can do, overall it was hard to tell if they made a HUGE impact. So with the prodding of a friend, we decided to start to look into doing alternative therapies.
Our choices for therapy lead us down 2 possible paths: The Institute or ABM. What are these therapies and what did we choose? Well, stay tuned to find out in the next blog post, and you will be stunned with the outcome!
One thing my husband has always loved about me was my positive attitude. I like to think of it as my "can do" attitude. I hate thinking about how things "can't" be done, and like to think of how they "can".
Having Colin in my life should mean that having that optimism will get me through so many of the tough days ahead, especially because he is a preemie.
Yet lately I find myself trying to remember that side of myself every day, especially when his life presents a plethora of complex riddles and challenges.
On the whole, things are going "GREAT" with Colin. Since my last post, we are now 100% eating by mouth! Yay! That in itself should be a great accomplishment, so for the moment, I'll pat myself on the back *pat, pat, pat*. :)
Still, trying to enjoy this accomplishment has been hard because of several reasons. First, he started having constipation issues, and without boring you with the LONG details, after several different formula changes and interventions, we finally settled back to giving him what he had been drinking all along (Neosure formula if you are interested).
Continuing with the Neosure is not without it's issues, because his GI doctor has determined he has a Milk Protein Allergy (not lactose intolerant), and until he outgrows it around 1 year of age, he will continue to sound mucosy in his throat when he eats, and his poops look.....let's just say, not normal.
At the same time while we have been trying to continue feeding him by mouth, several "quirks" and problems have now presented themselves.
So the second hindrance has been that Colin has developed this weird habit of taking only about 1oz of milk for his day feeds, and then the rest of the time he twists his head from side to side like he doesn't want the nipple, but then gets mad when it is removed from his mouth. This makes feeding him a 2-4oz bottle take over 30 minutes if I'm real persistent. And that's if he even decides to finish it.
The last hindrance has been that when he had his pediatrician appointment this Wednesday, we determined that he was still gaining weight, and in the past week he had gained 7oz (for a current grand total of 12.7oz). Way to go Colin!
Yet.......I can't even revel in this accomplishment either, because the pediatrician has determined that this amount is not "enough", and that if he doesn't gain what she determines is "enough" weight by his next appointment in 3 weeks, I may have to go back to feeding him by G-tube during the night to increase his weight gain.
Which makes this head twisting thing frustrating, because now that he does this, it is all I can do to get him to consume the amount he used to take when he was feeding by G-tube. Each day he seems to be taking in less and less. Except for the early morning after he has slept 6-8 hours straight at night. Then he can take a 5oz bottle no problem! Go figure......
Am I sounding too Negative Nelly yet? Well, one last thing kinda sinks me even lower into negative thoughts. One that I'm almost afraid to admit for fear of hurting feelings or making others feel bad. Yet this blog is a place for me to vent and document my feelings on motherhood, and I guess I wouldn't be honest to myself if I didn't disclose them.
So what's this last revelation? Well, it seems that every little person around Colin's age (mostly his adjusted age, because let's face it, he is WAY off from other's at his chronological age) is doing things that seem so simple, yet so far off from what Colin can do.
Little things like standing on their legs with their parents help, or pushing themselves on the ground, or gazing intently at the world or people around them, or even just taking more than a 5 oz bottle like it's nothing.
I know, I know. Colin is on his own schedule, he will simply just do things a little different, blah, blah, blah. I know this, really I do.
Yet, why can't my mind just allow me to enjoy the little things that Colin can do? Like the fact that he can now hold his trunk upright with a little help from me so he doesn't fold over like a piece of paper.
Or his eye contact has improved to the point where he can stare at someone or something for at least 3 REALLY GOOD seconds.
Even the fact that he can suck a binky and hold it in his mouth on his own for at least a minute (and longer if I prop him on his side!).
Still, what kind of person am I that somehow these things seem trivial compared to the world around him. It breaks my heart knowing my mind thinks these things. And that is the conundrum that exists within myself every day.
The fact that one side of me is GENUINELY happy for these little milestones occurring in others lives, while another side of me is sad and perplexed that my little guy is no where even close to doing these things.
And how another side bursts with pride and happiness when Colin shows a small improvement in therapy, like reaching out for a toy or person in his vision, yet another side wonders why he can't hold his grip.
The only time that these other "negative" sides seem to go away is when I live life within the confines of my house, only seeing what is in front of me, and not paying attention to the fast pace around us.
Yet is this a way to live life? In a bubble? I know the answer is no, but still, I find myself wanting to. Wanting to keep the bursting pride of seeing small accomplishments in Colin as the only BIG thing that happens in the life around us. Wanting to forget that there is a time and place for things to progress in this life, and just wanting them to happen whenever they decide to, no expectations.
And I know it's there. The side of me that is still optimistic. Because that side is the one that tells me that things are going to be different tomorrow. That no matter what, one day we are going to wake up and Colin will be standing on his legs, or crawling on his belly, or even drinking like it's no big deal.
So I wait. Wait till I have come to the end of the day when I can tell myself that we have another WHOLE day ahead of us tomorrow. And I forget about the bubble bursting at some point, and just patiently wait for it to grow again...........
Things have been moving at a breakneck pace these past few weeks! So at the beginning of the month, the swallow study was conducted. This time, I had so many hopes and expectations, it was hard for me to try to relax this time around.
However, Colin has really come into his own, and this time around, he pretty much said "Mom, I got this!". And got this he did! He passed with flying colors! There was not even a hint of him aspirating like he did during the first swallow study. They even lay him on his side, used different flow nipples, and each time, he swallowed like a champ.
With that HUGE monkey off our back, we were now ready to start feeds by mouth. However, as much as I (and Colin) would like to go full blast into eating by mouth again, because he is starting over again, we have to go slow so he doesn't tucker out and start to not like it over time.
For this reason, for the first few days, we had to go slow and start with 1 feed by mouth a day. However, the next few days after the swallow study were crazy busy, and we had to wait about a week before we could start.
First, it was our 5 year wedding anniversary! Every year we have usually done something fun and romantic, and with the past year we had, I wanted this one to be no different.
I read about this hotel in Laguna Beach and thought it would be nice, so we stayed here:
For a little fun, I decided to book a kayak tour of the harbor. Sometimes my great ideas sound great in theory, but reality sometimes is rougher than I imagined, however, this was NOT one of those times!
After this relaxing trip, we met with Colin's Occupational Therapist who then helped us to devise a plan to get Colin eating by mouth again. Yet our plan had to wait a few days, as we had to travel to Houston to see Rich's daughter Lauren (funny blog post about our travel experience to follow!).
Once we did start 1 feed a day and Colin was doing FANTASTIC with it, earlier this week, our Gastroenterologist decided we could then increase his feeds to 3 by mouth a day.
This is when I came to a crossroads. Up till this time, my plan had always been that I had wanted to breastfeed Colin if it was ever fully possible. Now was my chance! However, my bosom was not cooperating.
A few weeks prior, I had reached a "pumping" burnout. Because Colin's growth had increased the amount of milk he had to take in a day, over time I was not producing enough breast milk by just pumping. For this reason, I figured that until Colin was ready to breastfeed, I would just reduce the number of pumps a day, then eventually transition from pumping exclusively to just breastfeeding.
Yet in doing this, I had reduced my "supply" considerably, and now that we were suddenly ready to put Colin to breast again, I had to make a decision. If I wanted to go forward with my exclusive breastfeeding plan, it would have to mean I would have to start including multiple pumping sessions a day (in addition to Colin breastfeeding 3x a day) in order to increase my milk supply to a level that could sustain him.
Maybe it was after reading this article: "Are you Mom enough?", or maybe it was just reality, but similar to my kayak type of idea, I realized, the idea sounded much easier than the reality.
Because as much as the "idea" sounded great, the reality was much harder. I lasted 2 days! Is that pathetic? I don't know, in the end, I just said to myself, "Is being stressed out about this what I really want? Or did I just want the chance?". I realized just being given the opportunity to nurse at all was really all I could ask for.
Being able to look into Colin's eye while he breastfeed was pretty amazing. Watching him fall into a blissful sleep was cute. Yet making sure he was growing and getting healthy each day, formula was just as easily doing the trick for me. With that, my mommy instinct grew a little stronger!
So now I have been bottle feeding my little guy 3x a day, and if I'm honest, sometimes 1 more time than usual, as I realized I have created a monster! To say Colin LOVES eating by mouth is pretty much an understatement. Just look at what he does when I have to take away his bottle to burp him:
"Mom, I'm not done yet! What ARE you doing?"
Guess he doesn't miss my boob that much...........
