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!

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.

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.

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.

Home at last!

Only after 9 days were we able to bring our little bundle of joy home. We were still left with a lot of questions about what to do with our injured child. When we left the hospital we were told to ‘massage’ the arm but nothing further. I knew that we needed to get moving on his healing process with extra exercise and additional therapies. And so began the hunt for online resources and communities. Living in China we are limited in where we can take him–as our Chinese is very limited and the English resources are few and far between.

Through our research we discovered that Spencer can make a full recovery if certain signs are there and with early intervention. We would have to be diligent about exercises and massaging his right arm. I searched high and low for information about Range of Motion exercises. I was only able to find one instructional pamphlet for infants and a few videos aimed at older children. I read over the pamphlet and searched on massage techniques for infants. I felt confident in my ability to get started on the healing process.

In the first week of Spencer being home we started to notice a gripping grasp in his right hand. If we placed our finger in his right hand he would tighten his grip. Albeit, it wasn’t noticeable to the naked eye, we could feel the slight tightening. We continued to massage and do ROM exercises throughout the day. Every day we noticed a tighter grasp and in about the 4th week mark we notice him begin to move his shoulder up and down.

By this time we had begun to see a Pediatrician, but not a specialist. He looked over Spencer’s arm and with every visit there seemed to be improvement. Our doctor said that he showed signs of making a full recovery. This was great news for us, but we knew we still had a lot of work a head of us if Spencer was to make the full recovery. So we continued to search for information online. We became ever increasingly frustrated with our search results. A lot of searching resulted in legal advice and not much in the way of help.

By the second month Spencer started to move his arm up and down–only slightly–from the shoulder. There was no bending at the elbow and when I did exercises with him I noticed that resistance was starting to set in. It meant that his arm was beginning to have working muscles. By about Christmas time we noticed that when he lifted his arm, Spencer was beginning to bend at his elbow, albeit a slight bend.

We continued our massaging and exercises and by mid January we noticed a full bend of his own and he has even begun sucking on his arm. He will push with his right hand up to his face using his left hand. He will force his right fingers into his mouth with his left hand. When Spencer lifts with his right arm he can now raise it–laying down on back–to about ear level.

I only hope that with our continued early intervention that the healing process continues. I have found an online parents group for Erb Palsy and I hope that through my interaction with them that I will find further information for Spencer’s continued healing.

Here’s a video of us working together to strength his arm: Some exercise

Spencer’s first few weeks of life

I left off with Spencer in the NICU at Fudan Children’s Hospital. I wasn’t able to transport with Spencer to the NICU as I was suffering my own birthing trauma. So Peter was the one to ride along with the Shanghai ambulance. In the 4 years we have been here this ranks up pretty high on Peter’s awesome list. Unlike the ambulance services in Canada, the traffic does not pull over for you. It is also a small little van that is empty on the inside except for the equipment. It is often said that you are better off taking a taxi to the hospital than a Shanghai ambulance. So off to Fudan Spencer went.

During his 9 days there he was subjected to a range of tests and specialists. It was an odd walk into the hospital (we paid for the VIP service). We had to walk past this waiting room that was full of concerned parents and grandparents, we had to use a special key card-which prompted some looks–and then we had to suit up. I don’t know what the ICU wards are like back home (thank goodness we’ve never had to enter one until now) but the ‘blue smock’ we had to wear was the same one that many people wore. It wasn’t very sanitary. We had to walk past two rooms of about 15 newborns in each room until we came to Spencer’s room. It was heartbreaking to see all these babies hooked up to various machines for various reasons. You never know how much can go wrong with a baby.

I knew that Spencer had experienced a lot of trauma. His body told me so on the outside. He was swollen and bruised on his chest. I was in an emotional state because of his injury and trauma. The last thing I want to hear from any of the nurses or doctors is to tell me ‘not to worry’ or ‘no need to cry’ because he’ll be okay. They needed to let me have my breakdown. I also don’t want to be told that my baby is fat. Yes he was born 4.65kg (10.25lbs) but that still doesn’t mean that he’s ‘fat’. Peter and I were always told that Spencer was fat. It didn’t make me feel any better about the situation.

We were the only parents in the NICU visiting their child (really the only one paying to have the ‘right’ to be with our child). Peter and I must have looked like some foolish people. We would go to the hospital to visit Spencer at 2:00pm and stay until about 7 or 8pm. We would sit for 5 hours just staring into his incubator, talking to him, touching him and talking to each other.

At first he looked like he had gone through quite a battlefield, but with every visit he improved. The swelling went down, his breathing returned to normal, his glucose levels subsided to normal and he started to become aware of his surroundings. When we first started going all he did was sleep–he only woke up to feed–and only because he was being awakened for the feedings. I started to produce milk about 4 to 5 days after the birth but until then they were feeding him formula. This was against my wishes as I had planned to give him the most important feed of his life-the colostrum which is produced before breast milk to give babies a one up on life. Unfortunately, this was not to happen. Instead, our son had to endure Nestle milk formula until I started to produce milk. For those of you who do not know about the Nestle milk formula scandal in some African nations I suggest you get yourself informed. I was able to bring in the breast milk once it started coming down and I was able to feed Spencer when I was at the hospital. Unfortunately, because he was no allowed out of his cage aka incubator I had to rely on bottle feeding–fortunately, it was my breast milk after a few days.

Everyday there was improvement with Spencer, but everyday there were new battles with the nurses and doctors to get him home. Test upon test showed some abnormalities in one form or another. First there was the glucose levels. They were elevated-again we were told because our baby was fat he had high glucose levels. Then his breathing was rapid and abnormal, so assisted breathing was required. Then there were the heart functions, valves were not closed properly so they had to give him heart medication to help close the valves.

While some of the children sat around in their incubators with the only interactions from the nurses and doctors, Spencer received a lot of one on one attention from us. I truly believe with all my heart that because we were there talking and touching him that improvements were made everyday in his battles. I knew that if we could just get him home that the real magic and real improvement would take place. I really needed to have Spencer home for both our healing progress. So after much debate and argument with doctors and nurses we were able to bring Spencer home from the hospital. The real healing would begin.