Never Give Up - Brynlee's Journey

We recently received an update from a patient who wanted to share their journey. Angie Shafer--thank you so much for sharing Brynlee's story!

Children’s Rehab Center in Hastings is amazing!!! They have such wonderful, loving and caring staff. As I was writing this I realized how many things since birth we have done to help this little girl out. Each attempt was a step forward but the biggest step forward was going to Children’s Rehab Center.

My daughter Brynlee was born at a normal birth weight and with a normal pregnancy. The only thing that happened while I was pregnant with her was that I was sick a lot – bronchitis, cough, no voice. She was a formula baby. The first few days home from the hospital we noticed she would spit up and cry a lot. We switched her from regular Similac to Similac for sensitive tummies. She was also prescribed an acid reflux medicine. The formula and the prescription worked but she was still a fussy baby. Her doctor recommended trying Gripe Water – that was amazing stuff!! I recommend for anyone who has a fussy baby. It helped a lot but didn’t solve. I bought a formula pitcher that made the powder dissolve really good, Dr. recommended putting her to sleep on her tummy during naps to help, anything I could find I tried. At about 3 months of age a family member who is a nurse, suggested switching to liquid formula. That was liquid gold to us! Between the liquid sensitive formula and the gripe water she a much happier baby.

She loved her swing, bouncer chair, being held and rocked. When I rocked her to sleep – she would tuck her head up in my armpit and fall asleep. After her bottle she would take a pacifier. As she got older she would tuck herself so her blanket was over her head. If you moved the blanket she would move it back. She never did sleep all through the night as a baby though.

Milestone wise she always met them. She started walking at 10 months. Once she turned a year old we switched her to whole milk and then to 2 percent milk. Until age 5, she never slept through the night. She used to wake with night terrors and as she got older sleep walking and fussing in her sleep. She rarely woke up happy.

At age 2 she had two teeth pulled. They were rotten. The dentist told me it was because of how sick I was when I was pregnant with her – it caused those baby teeth to decay. Probably also contributed to her fussiness and tummy problems as a baby. After having the teeth pulled she slept better and didn’t fuss as much. But still didn’t sleep all night.

We have tried many things through the years to help her sleep. At 1 ½ we moved her from her crib to a pack and play. She stayed in the pack and play till probably 2 ½. She slept better in it then she ever did in her crib. She loves tight fitting places to sleep. She then got moved to a full size bed. We have switched mattresses, changed lighting in her room, and added white noise.

Bryn has always been a very active, busy child. She is a pile kid. She plays in piles. A pile here a pile there. You don’t dare pick any of it up until the end of the day because she will go back and play with each pile numerous times. She loves to swing and learned to pump her legs at a very young age. She loves being outside and riding bikes. She loves to climb, jump, and hang upside down. She also never wore clothes as a young child. She was always running around in her underwear or just a t-shirt. She loves dresses. Occasionally we could get her to wear pants. Socks were always a challenge. She loved wearing sandals, cowgirl boots, and flip-flops and sometimes tennis shoes.

About age 3 ½ (September 2015) she started to get angry, hit, bite or just attack us. We couldn’t figure it out. I did some research and we talked to her doctor about taking her off of Red 40 dyes. It was a hard challenge at first – no red Jell-O, Kool aids, certain cereals, fruit roll ups, fruit snacks and Doritos. But we did it and we survived. The anger lessened but she would still get mad.

At age 4 she was experiencing issue with her clothing. It was a constant battle to get her dressed with pants, socks and shoes. She always wears dresses or skirts of some kind. But the big battle was when it became colder out that she needed to wear pants/leggings and socks and shoes with her dresses. She would have kicking, fighting, and throwing fits, undressing, and anything else she could do. Her anger would sky rocket. She would hit the top and then crash and really not know what had happened. She also would have numerous tummy aches and occasional vomiting.

At this point I was beside myself. Restless nights, tears and uneasy feeling on what to do for this little girl. I started researching things online and started asking questions to different people. I work in a preschool room in a public school – that was the biggest resource I could have. Several ideas were given. I contacted a friend of mine who is sells essential oils. Her and I visited for a long time and she suggested what oils to try with her (lavender for sleep and peppermint for tummy aches). She also suggested maybe going to the doctor and getting a blood sugar test done for diabetes and also a milk allergy test.

I took her to see her doctor in February 2016. We did a blood sugar test and a milk allergy test – both came back negative. As I talked with the doctor we thought back to her sensitivity to formula as a baby. Never once did we think of that –we went right from sensitive formula to whole milk. We switched her to 2 % lactose free milk and also kept her on the dye free diet. Just switching milk has helped her tummy aches. The doctor also suggested occupational therapy.

A week later, February 24, 2016, we went to Children’s Rehab Services and her life, my life, and our family’s life changed for the better. She was diagnosed with Sensory Processing Disorder. There were so many things that I found out. I read books, listened to what the OTs told me and I was willing to try their suggestions. I learned the importance of crossing the mid-line, that she needs movement – jumping on a trampoline or bouncing on a ball, brushing, routine, and many more things.

The moment that we walked in the door we were so warmly welcomed! The staff , the specialists – everybody – were AMAZING!!!!!

Within the first 2 weeks we could already see the difference. She was able to wear socks (turned inside out) and a certain type of pants. The battles weren’t as bad. After awhile she was able to wear leggings with her dresses and her socks could be turned the correct way. Now a year later – we do not have the clothing battle like we did before. She finished up with occupational therapy at the end of December.

Our routine now: In the morning she gets up between 5-6:15, we try to brush every morning (sometimes she request it and sometimes she tells me no) gets dressed (she picks out her own clothes – even if they don’t match – I don’t pick that battle and I don’t care as long as it gets us out the door), brushes her own hair, sometimes eats breakfast at home (otherwise she eats at school). Once she gets her stuff done – she can watch some you tube videos. Our mornings have been much better! She takes her lunch most days because she is a very picky eater and I can keep an eye on how much she did or didn’t eat and that it doesn’t have red dye in it. She does great at school. She is making friends, very active, and is a fast learner in school. Her teachers are really great at giving the kids brain breaks and they dance or do some movement.

After school she plays outside (if nice enough) or plays with her Barbie’s or dolls. Sometimes she wants to just read a book or watch TV. She occasionally helps me make supper (I have learned to let her – she gets moving, her mind frame changes and of course she loves making stuff and getting dirty! I don’t mind the mess – because I know she needed the messy part of cooking). We eat supper. She takes a bath. She now wears a t-shirt to bed (before she would only sleep in her underwear) we have been brushing at night and I rub lavender baby lotion on her legs, arms and back. She does take melatonin about a ½ hour before bedtime. She will tell me “ I’m tired I’m ready for bed NOW. I turn on her fan, her humidifier and put lavender oil in her diffuser. I read a few books and she falls asleep. She is getting better at sleeping through the night. Depends on the day’s activities whether she sleeps all night or not.

She still has her moments of fighting with us. But I have realized that she is cooped up all day at school and HAS to be good. After school if she acts up – I know it is her letting off steam. I try to get her mind switched to bouncing on the trampoline or on the ball, crossing the midline activity or dancing on a video on you tube. We also have learned that when she starts getting angry we look back on if she recently ate or drank anything. Some of the time the anger can be resolved by just getting her a snack or a drink of water.

One of the newest things that we are doing is using The site is a wonderful site for activity and movement. The guidance teacher at school told me about it. The teachers use it in the classrooms and the kids love it. It is a free site and you can even set it up as a parent account. The guidance counselor has also explained to her class how to do belly breathing.

The second thing we have done is we rearranged her bed so now her box spring is on the floor and not on a bed rail at all. Her mattress is on top of that. We have a padded pillow that is tucked between the wall and her bed (so it feels more daybed/couch type). It is also piled with lots of pillows and blankets. She is sleeping much better.

The third thing we have done is a chart (I am not a sticker chart type of person) . I kind of copied what they are doing in her class. In class if the child does a good thing, help someone, or listened really good – they are rewarded with a star sticker. She earns a sticker when she takes a bath (sometimes bathing is a big issue for her), putting silverware away, folding towels, sleeping all night and the big one is not fighting with her sister or her dad!! Once she gets 5 stickers she gets a SHAFER I CARE. Once she collects 5 SHAFER I CARES she gets to pick a toy out at Wal-Mart. She is doing really great at it and the fighting with her sister and dad is a lot better. She is really close now to getting 5 SHAFER I CARES.

I wrote all of this to make people aware to keep trying things!! Ask for help, stay knowledgeable and just don’t give up. Never be afraid to ask questions. Talk to the OT, the medical doctor, the child’s teacher, read and understand your child, read information in books or online and remember Never give up!!! I am so thankful for the resources that I have come across on this long journey. Each day is a new day! Each accomplishment is a big deal – no matter how small or big!!

Thank you so much Children’s Rehab Center! WE are so thankful for all of you! What a difference a year has made!!! Going to exercise was her highlight of the week!!! She misses you all so much!!

Thanks Again,
Angie and Brynlee Shafer