Appointments and results

We have had a lot of appointments since the last update on where Spencer’s status sits on the brachial plexus scale. It has been tough and heart breaking but we have answers and we have direction for treatment.

Our first task was to get Spencer to Sainte Justine hospital for the battery of tests. He was scheduled for an MRI-C Spine, X-Rays, Ultra Sound of the shoulder and a Fluoroscopy of the diaphragm. For the MRI Spencer had to be put under. That was hard to watch but at the same time I kept thinking this stuff would be great for parents :-). Then he had the X-rays which was traumatizing for me as a parent. He was awake for them and poor little guy was strapped to a board and I had to hold him in certain positions. I should have just told them that I was pregnant so I didn’t have to do it. Peter went in for the Fluoroscopy. Then we went together into the ultrasound.

We had our meeting with Dr. Janelle last week to go over the final results. This is what we know from those tests. Spencer’s C8 nerve is the affected nerve. The tear is at the root and therefore can not be repaired. This affects mostly the hand and lower trunk movement. So it looks like there isn’t much we can do for the nerve but for the muscles and joint we will be working to try and keep him strong and flexible. Spencer is very strong for the most part he just has some movements that he struggles with, mostly abduction and supination. Because the C8 nerve is the affected one then his thumb does not move. He has great pointer and middle finger movement and uses these two fingers to pick up things or to transfer to his left hand. Other than the tightness in the shoulder he has great range and uses his right arm a lot more than some children with this type of injury.

The next step is Botox. He will be getting injections into his shoulder area and then he will be placed in a brace. Depending on how tight he is at the time leading up to the appointment he will be placed in one of two braces. It will either be a plastic or plaster brace. If he has to have a plaster brace this will be for 3 to 4 weeks, if it’s a plastic brace it will be mostly worn at night. There are more things planned but one step at a time. There was talk of shoulder release, tendon transfer for the thumb and a small nerve transfer to help with the movement of the shoulder, but not the big brachial plexus nerve graft.

So this is where we are. While I’m very upset and heart broken that we can’t fix his C8 nerve I am at least happy that we are moving forward with his treatment.

The time is near!

So we’ve only a short time left in Shanghai before we move the clan back to Canada. We had some exciting news from the Shriner’s Hospital in Montreal. We have our appointment booked and we are about to see Dr. Chantal Janelle. We don’t know much about her other than she is an orthopedic surgeon who specialises in upper trunk care.

What I find frustrating is there is a lack of information available to a Canadian family who has been dealt with this injury. There is plenty of information on Doctors in the UK and Ireland as well as a whole lot of information on Doctors in the US but the only Doctor that I know who specialises in this injury is at Sick Kids in Toronto. I’m sure she will be wonderful but where are the online support information for Parents or people with Erb’s Palsy? We’re suppose to be a nation of online savvy people yet all the information regarding Erb’s Palsy that I have read up on has come from the UK, Ireland or the US. So maybe my mission upon my return to Canada is to coordinate information for people living in Canada. I will see how it goes, with my time with Spencer and my studies in a few years.

Other things that Spencer has been doing. He is now crawling like a mad monkey. At times he’ll do the combat crawl–he can move faster this way–at other times he will push up on his non-Erb’s arm and swing the Erb’s arm forward then fall/roll towards his goal. The latest is the butt shuffle. He is moving around by using his butt and kicking his legs to his destination. There is no stopping this boy. He is one strong little guy.

Speaking of strong people; I was reading about athletes who suffer from this injury. I found a well paid suffer of the injury. He is a player for the NFL’s Tampa Bay team–Adrian Clayborn. So if someone can make it to the NFL with Erb’s Palsy then I know my little guy can be successful too with perseverance!

Happy Mother’s Day

Today North American’s and almost the rest of the world celebrate their mothers–save the Brit’s, they need to do it back in March–when May is sooo much more lovely with flowers in bloom.

Anyways–wanted to share about Spencer and his progress. He continues to meet most developmental milestones. He’s spending more time on his tummy and I suspect he’d be doing the combat crawl right now if he could figure out his Right arm. He’s an active little guy and I’m not sure what he would be like if he had two functioning arms–not that I would wish this on anyone–but I’m pretty sure I’ve got a dare-devil/runner on my hand. He has to be moving all the time. He’s down to two naps a day–a long one and then a short one or vice versa.

Teeth are a comin’ oh yeah–or something’s been bothering him so much that he screams while sleeping…it has to be his teeth. Spencer is fine during the day–a few moody moments but when it comes to sleeping in the last few days he’s been super cranky and super sore. It can only mean one thing–teeth…and please hurry and erupt in his mouth. I can’t take the sleepless nights any more. The other day while I was half awake I did two things. First, before I poured my coffee in my travel coffee mug I thought it would be fun to pour in cornflakes :-0 Then the other morning while I was preparing the coffee I decided that instead of coffee grinds in the filter that formula was perfectly acceptable. Man–please teeth come in!! Even this blog post is random posting ;-s

So Happy Mother’s Day to you all!

Developmental milestones and yummy food!

Okay, I’m over my “I hate that this has happened” moment and I’m moving on. I just need to have those days once in a while. However, this post is not about that, but about the achievements Spencer has made to date!

Rolling: And he’s off and rolling like a mad monkey! I can’t leave him unattended at the moment. It started with him rolling on to his Erb’s arm and getting kinda stuck in position. Then he would roll onto his Erb’s arm all the way over. Now he’ll roll either way, on to his Erb’s arm or on to his non-Erb’s arm.

Crawling: Spencer is showing signs of wanting to crawl. Today he did a mini-combat crawl, in that he crawled by using his non-Erb’s arm then his Erb’s arm and then he rolled over. My understanding of this injury is that he will most likely do the combat crawl or bum shuffle crawl. My preference is that he use his hands but I know that this may never happen.

Sitting: Speaking of bum shuffling, once he becomes more stable he may start this. Spencer can sit for a prolonged period of time and only falls over when he’s reaching for something or flinging his arm with a toy in it. He’s finding his centre of gravity. This will be different from other babies who do not have the same injury as he does.

Talking: My oh my, with parents like Peter and I, Spencer will be Mr. talker in no time. He’s babbling ‘mama’ ‘baba’ and blowing raspberries. He even makes up stories as he blab, blab, blab followed by a hearty laugh. For those not in China ‘baba’ is what they use for dad or father.

Food: Oh boy does this kid love food! We had him out for Nepalese food the other night, obviously we didn’t give him the spicy stuff but he loved the cheese balls(a potato and cheese combination deep fried). And last night he tried taco food–spicy ground chicken with some cheese and sour cream. Other food he has tried that he likes to eat–curried sweet potatoes(which I make) and a Honduras stuffed pepper(bell pepper with rice and ground meat with spice). And tofu! The kid loves Tofu! Spencer just loves food! He loves to sit and watch me cook in the kitchen and he loves to try all sorts of food. To date he has only disliked two items. Green peas and Green Beans.

General Disposition: I would say that we’re pretty blessed to have Spencer in our lives. He is just a happy go lucky and social baby. He gets on well with everyone he meets and smiles right back at them. He doesn’t know what has happened to him and his shining spirit reminds me every day that I am blessed with his presence.

One of those days

I’m sure all those OBPI moms out there can relate but today I’m having one of those “Why did this happen to my precious little one and why can’t my child ever be like the other kids” kinda days. Perusing Facebook at pictures of other little ones who were born at or around the same time as Spencer and I see some of them sitting already and moving around and picking things up while Spencer has to do everything with one hand. Don’t get me wrong, I’m genuinely happy for these people and the wonder of their child but I get so frustrated knowing that Spencer could be sitting and showing signs of crawling now but because of his injury he’ll be delayed. It’s also frustrating knowing that these delays can have an impact on his overall learning. I’m also just frustrated because I’m anxious to know what Shriners in Montreal has to say about our case and I just want to get to Canada where Spencer can get the help he needs to at least get to a level of movement in his arm.

Thanks for listening. On the brighter side he’s becoming quite the talker.

 

Happy Easter

Our little man in Shanghai–as he’s often referred to–is glad to wish you all a happy Easter Sunday.

Today I thought I’d share some of the non-Erb’s related stuff that he’s been up to this week. We’ve had two very special visitors here visiting for the past week. His grandfather and aunt are here from Canada to see a bit of Shanghai and a lot of him. So he’s got to have a lot of fun just exploring the city and hanging out with Mommy, Daddy, Auntie Jenn and Grandpa.

Today he got to try something very uniquely Canadian. He had his pancake and maple syrup. Yummy fun with the staple Canuck breakfast items! Here are a few pictures of him enjoying the deliciousness that is Maple Syrup.

 

The positive side to Spencer’s Erbs

As tragic and horrific it is that my son was born with a birth injury and as lucky and blessed as we are to have him I think there is a big positive to Spencer’s Erbs. Spencer was born to parents who were advocates for those who are disadvantaged before his birth and now more than ever we are advocates for him specifically.

Prior to meeting Peter he had done a lot of work with children with disabilities. He had also worked with adults in a palliative care situation. I’ve worked with children and youth who are socially, emotionally and behaviourally challenged. So we both know how to advocate for Spencer to get his needs met. It’s not to say that parents of disabled or challenged children are not advocates in their own right, however; we were doing it before it entered into our own back yard.

This can have a negative effect with other professionals. We are those annoying parents who research everything, ask millions of questions and challenge professionals in their opinions. I know what it’s like to be on the receiving end of those questions and challenges.

Spencer is also lucky that I am now working in an ECE setting. I have a huge repertoire of action songs that I use with him. This will benefit him with his PT–as we will do action songs that help build the strength of his little arm without using the ‘exercise’ word. Also, because I work in the education field I have worked with many professionals including OT’s, so I know a little bit about what he needs to work on some of the fine motor skill development and other sensory related activities.

Spencer has another huge advocate in his corner who is highly educated and understands a lot about the biology and science behind his injury and challenges us to ask the questions of the professionals. Peter and I are not hard scientists, we’re social scientist. His biggest advocate, beside his mama and baba, is his NaiNai-which is chinese for grandma. She challenges his parents who challenge the doctors.

So for all the trauma and tears there is a silver lining in Spencer’s birth injury.

What is Erb’s Palsy?

As I move through this journey of understanding I am beginning to see what this injury is and how it could really have been prevented had the doctor listened to me from the beginning.

Erb’s Palsy, or Brachial Plexus Injury, is a result of damage to the Brachial Plexus Nerve centre. This nerve centre is located along the spinal cord area just by the nexk and shoulder. I have often read many explainations about C5, C6, C7, C8 and T1. However, for me-the none scientist-it was all gobilty goo speak. They might as well have been speaking in tongues. I’m a visual person, so when a support group that I joined posted a visual of exactly how these C5-8 and T1 affect the arm I had some deeper understanding. If the C5 is injured then the shoulder is affected. If the C6 is injured then the bicep is affected. If the C7 is injured then some of the bicep and forearm and wrist are affected. If the C8 and T1 are affected then the hand is injured–and this is more of Klumpke Palsy. From my personal observations I can say that all of the nerves were stretched during the delivery. Spencer’s arm was not functioning at all upon his birth.

Erb’s Palsy happens when a baby gets ‘stuck’ and needs to pulled out. Often the OBGYN will use extraction methods like forceps and vacuum suction. Or in my case the doctor pulled on Spencer and a nurse pushed down on my stomach. He pulled so hard that the nerves were stretched and now our son may have a disability for the rest of his life that was caused by someone who thought it was okay to deliver a baby on your back.

Erb’s can be prevented and had I known that this condition could exist I would have fought harder with my birth plan and I would have had Peter fight harder when I could not fight. I had wanted to have a smooth delivery with either me in a squatting position or on my back. I had researched many things–but especially how to birth a large baby. Spencer was measuring large in all my ultrasounds. All the midwifery websites and birthing websites suggested that for large babies one should birth in a squatting or on my knees position so that the baby would not get stuck. When I suggested this to the doctor he said that the hospital where I was going to be giving birth does not support this type of delivery. That should have been a red flag I should not have ignored. In all my research about large babies there was no mention of Erb’s Palsy. They talked about macrosomia and all the health complications like high or low glucose levels, trouble breathing but they never once mentioned Erbs or Brachial Palsy. So for all you mom’s out there searching the internet about how to birth large babies I hope you come across this post and really fight for your birth plan.

To sum it all up about prevention I would say the following to any expecting mothers:

1. Don’t give birth with your legs up in the air and you on your back. Your baby may get stuck as this is the most narrow and dis-functional way of giving birth.

2. If your baby is measuring large and you’re not sure about ways to give birth I would suggest you look at c-sections and alternative birthing positions for large babies–ie on your knees.

3. If your doctor does not wish to follow your birth plan walk away. That is a red flag that they are not respectful of your wishes or your concerns. This is your birth. You should enjoy this wonderful time and you should do it your way.

For further information about Brachial Plexus Nerve Injuries I would suggest the following links:

United Brachial Plexus Network

Erb’s Palsy Group (UK based)

ERBS Palsy Friends and Family (Ireland based)

Dr. Howard Clarke (Sick Kids Toronto) –he created the Toronto Scale

Shriner’s Hospital

Dr. Rahul Nath -Texas Nerve Institute – he is world renowned for his work

Spencer update

Spencer is now 5 1/2 months old. He continues to show improvement. There is muscle development extending beyond his elbow–or what appears to be–which I will check with the doctor in a few weeks when we go for a check up. Every day we see little improvements. His wrist no longer lies limp, and there seems to be subtle movement there. He also is beginning to relax his fingers. I have noticed that his right arm looks shorter but I’m not sure if this is because his fingers are curled up still or if it’s actually shorter. I will get this measured when we see the doctor as well.

On an emotional level I still continue to struggle with what has happened. I’m constantly seeking answers. I still struggle to watch videos of other children who have suffered the same injury but I know I must connect with these other parents as there is not enough information out there.

I recently got the courage to watch a PBS documentary about OBPI. I went to go watch it shortly after Spencer’s delivery but the trauma was still too fresh in my mind. Again, I started to watch it but I knew I had to finish it so that I could judge it as good information to share with everyone. It does have a lot of information and it does talk about some of the stuff I advocated for but was denied due to cultural misunderstanding. If you have a moment, please watch it here.

My next blog post is going to talk about what OBPI is and how it can be prevented.

Everyday it’s the little things

Ever since Spencer was 2 weeks old and back in our loving home I noticed the little improvements. Today is yet another little improvement that I noticed. Usually he clenches his fingers like all newborns do-his left fingers have become stretched out as is normal in physical development but his right fingers remained in a fist. However, today we noticed the relaxing of the fingers.

The little movements started when he was two weeks old. He started with the gripping. When we placed our finger in his right hand there were signs of tightening. Shortly after we noticed the strength in his grip we started to noticed his shoulder move when he squirmed. Everyday we continued to massage and move Spencer’s right arm and everyday we started to notice muscle definition. Then he started to raise his arm-straight at first and then he started to bend. His wrist continued to be limp so we focused in on building the muscled and strength in this area. In the past couple of days we’ve noticed strength and movement return to this area. As stated above today we noticed finger relaxing and curling.

Yesterday we went to the doctor for the 4 month check-up and needles. During the check-up we had the pediatrician do a thorough exam. We asked to check for muscle loss/compensation and signs of “winging” as well as what his thoughts were on Spencer’s chance of full recovery. According to the doctor there is no muscle loss or muscle compensation. Spencer is using his muscles correctly as he gains control through nerve rejuvenation. He checked over the shoulder blades and said that the muscles were working correctly in that area so that winging would probably not occur. He said that with the showing of recovery at this stage that we need to continue to wait to see if he’s going to have full to almost full range of motion. I am hopeful and thinking positively about it and I hope that with these positive thoughts and support from my communities that Spencer will make that recovery I so desire. Today’s little movement gives me so much hope.