Tub & Bath Time

My daughter LOVES bath time and it's a perfect opportunity to get those arms moving! I let the faucet run and she reaches up to play with the water using both arms! She loves to scoop and dump which works on grasp and getting the palm to face up (supination). She also reaches to dump water over bath toys. Splashing is always a fun game and I usually let her go crazy! We save old soap containers and work on squeezing the water out or use squirting toys. I also encourage her to lather up her hair. We call it "squishy squish" and she has worked really hard on being able to get that hand behind her head to wash her hair. Lotion afterwards she really enjoys and we work on supination again. I get her to rotate her wrist so that palm faces up before I squirt lotion in it. She does sometimes need help. The one thing I have learned is that repetition is important for BPI kiddos. I've found personally the more we incorporate into everyday routines, the more progress we see. So make 'em work during bath time! They think they're just playing anyways! 

We also do swim lessons at our local community center. 

ALWAYS MAKE SURE TO SUPERVISE YOUR KIDS IN THE TUB! ☺️

Where There is a Will There IS a Way!

So one of my biggest worries with my daughter was that she'd have her arm just hanging there her whole life.... I'm a therapist and I've seen kids adapt even in the most horrible circumstances to over come any "disability." I wasn't necessarily worried about my daughter's health as much as "what would other people think of her?" Especially other kids. I know kids can be mean, I dealt with it in school and I don't want that for her. I also don't want her to ever feel left out or think she can't do the same things as other kids. I have ALWAYS believed, where there is a will there is a way and I want her to believe that too! 

As strong willed, stubborn, and determined as she already is I don't foresee that being a problem but I still worry. 

What have your kids have to overcome? Are they treated differently? How did you handle it? 

Jessica's Story

I want to thank Michelle Svetlitski for sharing her daughter Jessica's story. Everyone's journey is so different. Hope you can relate. I hope some of you can relate and this gives you hope! 

My daughter Jessica was born in 2003 at 8lbs 14 ounces, and as a result of shoulder dystocia, sustained a left obstetrical brachial plexus injury. For the first few months we were paralyzed with fear worrying about her future and whether she would need surgery or have normal use of her arm. Her neurologist did an EEG at 3 weeks old and had told us the results showed she had a "significant" injury which was quite upsetting to hear! Fortunately she was able to get hand to mouth at 3 days past that "magic" 3 month old milestone. As a baby, I know she suffered in pain and would be up many nights crying from 2 to 5am. I finally realized a warm bath would calm her and ease her pain, and she could go back to sleep. She was delayed in crawling, rolling over, and walking. She started OT at 1 week old. She was followed by her neurologist and saw 4 surgeons for consults between the ages of 3 months and 2 years old. When she was 6 months old, one surgeon told us she needed 2 surgeries and that we should schedule them immediately! I, and her therapist, both thought she was following a great pattern of natural recovery. Fortunately, the other 3 surgeons agreed (as well as 3 others I had sent videos to), and I am happy to report that today she is 11 years old and has not had any surgeries. She was released from OT and her neurologist's care at 2 years old. She does everything pretty normally, she supinates (uses a little compensation to get to full), she claps, runs and swings both arms normally, puts her hair in a ponytail, hands behind the back, etc. Although no one can tell she has an injury, she does have some residual deficits. She has limited external rotation, a winging scapula, and tends to elevate her elbow sometimes. Although her injury was a constant focus and worry for the first 2 years, it became much less of a focus from age 2 to 9. Around 9 years old, we noticed she started experiencing some pain, likely due to growing and additional lengthening of the nerve. She always has some sensitivity in the deltoid area and usually will have muscle tightness with any kind of weight bearing or activities that involve the arm, but she is back in OT now and does well as long as she remembers to stretch before and after any activities. The stretching makes all of the difference in the world! Although we are delighted beyond words with her recovery, there are unfortunate consequences of her injury. She desperately wanted to play the violin like her brother, but in therapy we quickly realized this just was not going to be possible; however, she did not let this deter her and we had a custom left-handed violin made where she holds the bridge with the right arm and bows with the left arm (reverse of normal). She desperately wanted to do gymnastics and cheer and tried both, but she was in so much pain from it and still found her left arm to be weaker when trying to bear her own weight, so she dropped these activities and instead is very passionate about dancing and takes tap and jazz. Today, she is a very beautiful, intelligent, determined Straight A 5th grader!

Let me know if you would like to share your story! 

Headbands and Hats

If your the mother of a daughter with a BPI and you never want your daughter to wear headbands again than ignore this post... Lol. Once my daughter started moving her arm more, (I want to say around 6-9 months) headbands were our friend. We had this big obnioxus flower head band with a thick band that I would put on her head and encourage her to reach up and get to pull down. I would sometimes have to hold down non-affected arm and give her as minimal help as possible or switch between both arms (one grab with affected one with non-affected). I tried to do 6-10 reps of the headband exercise daily or at least every other day. Once she grabbed the headband, we celebrated and she laughed and laughed. 

I feel like laughter was an important part of my daughters recovery. Finding things that were fun for her to do and seeing her laugh made me forget, even for a split second, the reason we were doing all these crazy exercises to begin with. 

I would encourage, even boys, to complete the headband exercises. After we mastered the headband we tried hats and scarfs and pretty much anything my daughter would put on her head (just please, please supervise your child when they are putting anything at all on their heads!). I think she even played peek a boo with a toy bucket/basket. 

My daughter, to this day, isn't a huge fan of headbands or bows and I think it's because I encouraged her to pull them off. However, the exercise was well worth the sacrifice! :) 

Side note on the scarfs: we saved an old baby wipe container and encouraged her to pull out the scarfs. She loved this exercise. Also encouraging them to throw them up in the air. And if you don't have scarfs and an old wipes container, a cheap box of tissues will do the trick! :) 

Can We Possibly Buy Anymore Toys??

Gosh WE bought everything! Anything I thought may help her move we purchased! Some of my favorites were the activity mats that had hanging toys. One of the ones we had, had rings at the end of it. Since infants have a primitive grasping reflex, and Ardyn (our daughter) had functional movement in her hand, I would hook her hand in the loops so she had to hold it off the floor. 

We also did lots and lots of tummy time. Weight bearing through shoulders is a great way to send input to the joints. Like most babies, my daughter wasn't a huge fan. We had to do short spurts (maybe 5 minutes) at first and build up to longer times as she began to tolerate more. Make a schedule or set a goal to do this a few times a day! I feel that weight bearing really helped us!!! We also set up the changing table in her room like this:

Each time I changed her, besides doing exercises, I made her touch the toy (blue, pink, and green hippo here). I think we had one with rings too that was a little bigger that made crinkle noises. When she started gaining more movement in her arm, she would reach for it herself which helped promote extension and external rotation. 

The Waiting Game

Since nerves regenerate about 1mm a month waiting to see progress is the most frustrating part about the whole process. Everyday we continued to do our exercises at every diaper change. I did it for my daughter, but I HATED it. I shouldn't have to be doing this.... Is what I thought to myself every time! I knew they were important so even if she screamed we were pretty religious about doing them! 

Here is a link to what we did 

https://m.youtube.com/watch?v=U4aOr1CXAGQ

I tried to mix it up by singing songs and moving her arms together to itsy bitsy spider, twinkle twinkle, old McDonald, etc. it seemed to break up the manaughtny of our plain old exercises. 

Like I said, waiting was the hard part.....

I would swear she moved or twitched when I'm sure nothing was happening. I figured it couldn't hurt to be optimistic! 

After each appointment it was like "Each child is so different. We just have to wait and see." Gosh I HATED that statement! Hated! Hated! Hated! Especially since I was soooo impatient!!!! I just wanted her to be better. Seeing her arm hang there broke my heart! 

It wasn't until right before Christmas 2013 that I saw some functional movement. I even recorded it to show my husband and specialists to prove I wasn't crazy and losing my mind just in case she didn't do it again. Even the littlest improvements we celebrated!!!! And we waited ..... Hoping for more.... 

Fun with Your Fridge

We like to use the fridge for my daughter to work on her reaching skills! We did this a lot when she was old enough to pull herself to standing. Not only does it encourage her to reach to get desired objects (we like magnets and post it notes) but gives her the support to slide her arm further up than she would have if she was just reaching for an overhead object. She does require encouragement to use her affect arm at times. However, I feel it's important for them to use both. I sometimes have to hold down lefty. I realize this may be a struggle for some parents as my daughter can sometimes be a booger when I try and hold down lefty. You may have to find something HIGHLY motivating to reach for or ease into how frequently they use their affected arm. For example, let them start with their unaffected arm. Then, encourage 1 or 2 turns with effected arm. Then, back to unaffected arm. It may take some time to build up to getting them to use just their affected arm. Also, as they start growing and/or reach higher and higher switch the height of the magnets or post it notes for more of a challenge. You can even make a game out of it.... Have them pull colored post it's off the fridge and put them in a desired location matching by colors. 

Digesting My Feelings

No one can tell you how to feel and unfortunately sometimes you can't help how you feel even if what you feel seems crazy and irrational. 

I had friends having perfectly healthy babies and I was a first time mommy myself. To say I didn’t want to have to deal with any of this was a TOTAL understatement. I was full of an array of emotions and millions of thoughts ran through my head. I went from being completely happy to full of worry and everything in between. I was happy, angry, scared, nervous, worried, concerned, and mad individually and all at the same time. What was wrong with me and my ability to give birth! 

She was perfectly healthy in the womb. Why did this happen to her .... was it my fault? Was it my anatomy? Were my hips not big enough to bear a child? Could I have pushed harder? Could I have done something different? Did I gain too much weight during my pregnancy? What will this mean when we conceive again? Will I have to get a C-Section? Do I want a C-Section? Can I try for a natural birth again? Could this have been prevented? Was it my doctor's fault? Did she really do all she could to the best of her ability? Should I sue her? How could she not know the baby was so big? Is it the ultrasound tech's fault? How could she be a whole pound off? Will my daughter ever be able to use her arm? How much function will she get back? When will we see improvements? Will we have to do therapy? Are their specialists for this kind of thing? Where can I find one? Where is the best specialist? Will she look different than other kids? Will she be limited in her activities? Will other kids make fun of her? Why? When? What? The questions never ended in my head. 

Nothing broke my heart more than seeing her arm hang there and having to explain to E.V.E.R.Y.O.N.E what happened and that they couldn't hurt her if they touched or held her. I was sick of explaining to everyone over and over. We were new parents I only wanted to enjoy my baby girl. This just wasn't fair. Instead, I was worried about what came next. 

I hate to admit that I felt this way but I was jealous of all my friends having perfectly healthy babies. Don't get me wrong I was completely happy for them because I didn't want them to deal with what we were going through, but I was jealous. I felt relieved when I heard that someones kid had even a minor issue because I felt that we weren't alone. Then, I felt guilty for feeling that way. These thoughts and emotions just cycled around and around in my head on a daily basis. 

I was also mad that I had such a difficult delivery. Why me!!! WHY HER!!!! The worst was hearing stories from your friends about how easy their deliveries were, how the baby just slid right out, and how tiny the baby was. I would hear stories about people having twins where their weight combined wasn't as much as my daughter (she was 9lb 7oz). 

On the other end, I felt happy. There were worse things that could have happened. My daughter was here. She was alive. She was healthy. She was ALL OURS!!!! Everything about her was perfect. We were first time parents so we had to remember to enjoy everything that came with parenthood as well, and we did. 

Although I felt robbed of so many things during my delivery I loved that baby girl. After I returned to work and explained for the 100th time to my colleagues what happened during delivery one teacher made the comment that since I was an occupational therapist that "I was meant to be Ardyn's mommy." She may never know it but that statement stuck with me and helped put things into perspective. I was meant to be her mom! I was meant to be her mom! She needed me now more than ever and I would do anything and everything I could for her. 

Our Story

I am hoping to highlight one person's story a week since each person's story is so different. Listening to others was an important part of the "healing & dealing" process for me. Finding bits and pieces of peoples stories that I could relate to. I have had a few people say they were willing to tell their stories so as long as there is a story to tell, I will post it! You can e-mail me at jacsbpiblog@hotmail.com if you would like to share your story!

Here's our story ....

Nothing is more exciting than finding out your pregnant - especially after you've been trying. We found out I was pregnant January 2013 with a September 2013 due date. We were ecstatic! I knew I didn't want to find out what we were having because I wanted it to be a surprise. 

During my pregnancy we found out that I had a marginal insertion of the umbilical cord. Let me explain.... Think of the placenta as a bulls eye and the umbilical cord as a dart. The dart's goal would be to hit the bulls eye dead center. In our case, the dart had just missed the bulls eye. Think of it as hitting the ring right around the bull’s-eye. Initially, I freaked out! What did this mean for the baby?!?! What it meant was monthly ultrasounds to make sure the baby was growing and getting all the nutrients he/she needed - I could deal with that and prayed that the baby would grow okay! The ultrasounds were an added perk for us because each month we got to see our little bundle of joy and we were thankful that week after week she was growing just as she should be!

Our final ultrasound was on September 23^rd and they estimated the baby was about 8lbs 5oz. They also told us that this was just an “estimate” but that the tech usually estimated on the high side. However, the baby can be off pound either way (so give or take a pound). At our last appointment on September 25^th we scheduled an appointment for me to be induced the next day. I was going to be a first time mommy and I don't know many people who like going over their arbitrary due date. I knew I was ready to hold that "little" peanut. Later we would find out that this decision was probably one of the best decisions we ever made.  

We arrived at the hospital EARLY that morning and the induction went according to plan the first 12 or so hours. I had terrible back labor so I opted for the epidural earlier than I had hoped. Around 7:00pm that evening was when I started to push. Everything seemed pretty normal until, I’m not really sure at one point, the doctor started getting a panic look on her face. I was at the end of my rope pushing (and the epidural did not work nearly as well as I though it should because I felt A LOT)! As the doctor became more and more panicked the next thing I knew she called some sort of "code" and within seconds 5-6 extra nurses ran into the room. Including one who jumped up onto the bed pushing her fist into my abdomen as heard as she could, and telling me to push (I will never forget her face). The next however long was kind of a blur. We didn't even know if the baby was a he or she. My husband told me that things were crazy and I'm sure there are some details he purposefully left out (which I don't ever care to know and thank him for this). Once the baby was born she was whisked over to the incubator table to make sure she was breathing. My husband never even got to cut the cord, but after they knew the baby was breathing the doctor opened the baby's legs to show my husband that it was A GIRL! Like I said, this part was quite the whirlwind so I'm not exactly sure the exact order of everything. I instructed my husband not to leave our daughters side. The origional "plan" was to have skin to skin right after birth but at this point, "plans" were only good intentions. I know my husband was trying to keep everyone quiet but I knew something was wrong as I could hear doctors and nurses talking about her "arm." Being an occupational therapist and even in my shocked and groggy state, I managed to mumble "is it a brachial plexus injury?"  Despite my husbands good intentions to keep the doctors and nurses quiet, because he knows I'm a worrier, I could hear doctors and nurses talking about her shoulder being "stunned" and possibly a broken clavicle and/or humerus. She would have to go get x-rays to be sure. She did have full movement in her wrist and fingers which I was thankful for! When they finally brought her over for skin to skin I was excited to finally get to see my baby girl. However, I was still trying to digest everything that just happened. I don't think I can exactly explain ALL the thoughts that went through my head but I was concerned about her and what this meant for her. She was healthy and had all her appendages but seeing her poor little right arm hanging there broke my heart into a trillion pieces. 

My baby girl weighed in at a whopping 9lb 7oz, a pound in the direction I hoped it wouldn't go (so much for erring on the high side). The x-rays came back clear and likely confirmed what I had originally thought......brachial plexus injury. At that moment I had an array of mixed emotions. I had learned about brachial plexus injuries in school but despite being a therapist, everything I knew when out the window. I was a MOM now and that came first. I don't know how many of you believe in "signs" but despite all my worrying, for one minute I felt a complete calm wash over me the day we were leaving the hospital saying "don't worry everything will be okay." I knew that message was from my grandma watching over us from the heavens above. As quick as that moment came, it went, and back to worrying I went but I knew I would move mountains from my little girl! 

Let's Do This Thing....

Okay, I've never blogged before but I have wanted to do this for a little while now. I originally wanted to create a webpage but thought I would try this blogging thing first and see where it took me. There's always room to be bigger and better, right? The main purpose of this blog is to serve as a support for parents who have a child with a Brachial Plexus Injury (BPI). My daughter has had a BPI from a traumatic birth and the one thing that helped me was listening and reading others' stories. It gave me something to relate to, helped me deal with what I was going through, and gave me hope! That is what I hope this blog does for you! I would LOVE you to comment and share your stories. If you e-mail me I can even post your story here. My goal is to post at least once a week.... with that being said, I am also the mother of 2 kids under the age of 2 (and they're not twins) so we have our hands pretty full. The other interesting thing about me is that I am an Occupational Therapist. Most children are referred to an Occupational Therapist for this type of injury. Being a therapist has put an interesting twist to our situation and my other hope is to post some treatment activities that I felt have worked for my daughter. We have had a WONDERFUL team of occupational therapists, physical therapists, and intervention specialists along the way and I want to share that with all of you! Please, please, please share your thoughts, feelings, and stories!!! Here goes nothing…. ENJOY!