What’s the latest?

I always said I would never start a blog with “sorry it’s been a while” but it really has been. The last entry was 2012 and lot has happened in that time span!

We were originally in Montreal being followed by the wonderful team at Shriners Hospital. Spencer was receiving weekly OT sessions until his Botox injection in June 2013. He had to wear a cast for 4 weeks during some of the hottest weeks. To top it off his favorite parks had nothing but sand all around so no climbers or other park adventures. He did, however, become really good at kicking a ball around. We saw some improvement in his ROM. He is a strong boy to begin with but now he was able to lift to normal and just a bit above.

In December 2013 we moved to Ontario and proceeded to seek out care with the Toronto sick kids hospital and Thames Valley Children’s Centre. We were able to get care through TVCC and had a lovely OT come to our house. We also met the word famous Dr. Clarke and his team at Sick Kids. The good news is that no surgical intervention needed at this point and home stretches and active play for his ROM.

Spencer will always have some limited movement with his right hand and arm, but it has never slowed him down. Some of his favorite activities are self therapy based play. We have a climber with a monkey bar swing that he tries to hang from. A climber where he pulls himself up, a bike pump where he pushes up and down and his most favorite is for us to kick an exercise ball at him where he falls down– learning to fall and catch himself.

So to you new parents struggling out there, keep chin up and push forward!

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.

As he continues to grow

Everyday I continue to be amazed by my beautiful boy. His first birthday is coming up in the next couple of days and he continues to progress in the treatment he is receiving.

Spencer has had a follow up surgical consult with Dr. Janelle and Dr. Saran at Shriner’s Hospital in Montreal. After conversations that took place in French–me trying to follow to no avail–it was concluded that he will require an MRI C-Spine for his nerves. They want to have a look see at the Brachial Plexus area. Then he will have a Shoulder Ultra-sound to have a look see at the joint area. Spencer continues to make improvement and for the most part has strong elbow and wrist flexion, but there are concerns about the shoulder. Then they want to have a look see at the Diaphragm, so they are doing a fluoruscopy of the diaphragm. She explained to me why they need to do this–but at this moment I’ve forgotten why :-S

We will find out next week hopefully when he will go for these assessments. This will not be done at Shriner’s Hospital but at Sainte-Justine Hospital Centre. I suspect this will be a full day event. They will do all three tests together instead of coming in for each assessment. Once those have been read over a plan of action will be put in place.

I continue to have mixed emotions about the whole process. With his birthday fast approaching I am going through an emotional roller coaster of rage and bliss. I am angry that this has happened to him but I am very much impressed with how Spencer continues to grow and develop.

I read a lot of personal stories and medical literature on Brachial Plexus Birth Injuries–I feel it’s important to have the support from other parents who have come through this process and I also feel it’s important to be informed of the various treatments and keep up to date on different medical approaches. However, through reading the personal stories and different medical texts I become frustrated because it seems like everything is always negative. I know there are various degrees of injury and each case is different so I need to keep that in mind. I want people to know that while there are some issues that come along with Erb’s that not every case and development is bound to be so delayed.

We continue to move forward and I continue to be totally amazed at Spencer’s development. He’s been walking for weeks now–both my kids are early walkers (my daughter was walking at 11 months too) and I am noticing that he is starting to string sounds together that sound like words and sing songy sentences. Spencer is a very clever boy–there is no fooling him with guessing games or any of the other hide and seek games. He see’s right through them.

Anyways–On Saturday he turn’s 1 and we will celebrate this milestone quietly and reflect on all that has happened to us over this past year. We will love him and hug him and celebrate the small and big steps he has achieved.

Update on Spencer’s Progress

So after an anxious 3 month wait for the end of work and a 20 hour flight back to Canada we have made it to our new city of residence—Montreal, Quebec. We chose to move Montreal because of the great reputation of the city as a vibrant and colourful atmosphere. We also decided to move here because of the wonderful reputation of Shriner’s Hospital.

We met with Dr. Chantal Janelle and an OT Nathalie. We had our first visit last Thursday. On our first visit there was a lot of observation and talk about steps and diagnosis for Spencer; nothing concrete about what to do other than a stretch and follow up OT appointment on the Tuesday. We were given a stretch to work on some external rotation. It’s called the Chicken Wing stretch. We pull the arm down tight to the side of the body and then stretch at the elbow in a chicken wing position. He will have to do this stretch for the rest of his life. He hated it at first, until I found a way to distract him while I did the stretch. This is pretty difficult with an active 9 month old. Although most parents are excited about their child walking and they do everything they can to encourage walking, it was suggested that in order to strengthen the shoulder and rotation of the shoulder that I should try and delay the walking and encourage more crawling. Spencer crawls very fast. Sometimes he uses the combat crawl and other times he pushes up on the arm like ‘normal’ crawling. Obviously this is the ideal crawl but any crawl that encourages the shoulder rotation is being encouraged.

We followed up with the OT appointment after 5 days of stretching. Nathalie was pleased to see some relaxing of the muscles—they were not as tight—and she was encouraged by this result. She then did the Toronto Active Movement Scale. Spencer scored 2.5 on the scale; therefore he failed the test. This means that he will more likely require surgery—either exploratory or possibly grafting. This will be decided in the coming months after consultation with Dr. Janelle. Nathalie then showed us two more stretches to encourage movement. The first is to encourage proper movement among the scapula. We hold down the muscle under the arm and stretch like the chicken wing and then up into a 45 degree angle. This is done while Spencer is sitting on my knee. The other stretch is to encourage the wrist rotation. We have to hold on to the two bones and then rotate in and out without overstretching the wrists.

We have a follow up OT appointment on Friday. Spencer will be getting fitted for a Splint to encourage the fingers to stretch out. It’s been hard today as Spencer is moving forward with wanting to stand up. The poor little guy has nothing but bruises all over his face from falling. Not only this but he’s got a bad rash going on, I will have to pull out the cornstarch for this.

Overall, while the decision to move back to Canada has come with mixed emotions I am pleased with our decision to make the move. I loved our life in Shanghai and I don’t regret any of it; however I love being back home. I have enjoyed all the delicious food that I have missed while overseas. We are subletting from someone who is travelling for the summer and she left us a patio garden to use as we please, so tomatoes, lettuce, squash, beets, green beans and cucumbers have been growing on the balcony.

Pictures will follow our appointment on Friday.

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.