I’ve heard before that being a parent helps you become less selfish and more self-less. Well, I think Tammi is a perfect example of that. Parenting is challenging enough, but when raising a child with special needs, “challenging” has a new meaning. Tammi is a good friend of Aya’s and I’ve asked her to share her story about raising her daughter Jada who has cerebral palsy. One of the inspiring things about Tammi is that she accepts her life as it is and does everything in her power to provide for her daughter and her family. She is one of the hardest working people I know and Jada is one lucky girl to have Tammi as her mom.
December 4, 2004 my husband and I were blessed with a beautiful baby girl. Unfortunately, our baby girl came way too early. Jada was born at 30 weeks gestation, 2 lbs., and 8 oz. Jada was alive and that’s all that mattered to us. She spent over a month in NICU, growing, and thriving giving no indication that she would suffer any long term affects from being premature.
However, as time passed and Jada grew in size, her ability to reach milestones were lagging. According to the doctor, that was to be expected. Ok? Mother’s intuition told me differently though. Jada was able to do everything, except for crawl, and roll from front to back and back to front. Again, I could tell something was not right. When Jada turned 13 months, it was as if she went to bed and woke up the next morning unable to do anything. She couldn’t sit up without help or support; she could no longer lift her arms or open her hands. Her body was limp with zero muscle tone. We took her to see a Physical Medicine and Rehabilitation Doctor for an evaluation. After a three hour evaluation the doctor gave us the news Â that he was confident that Jada had Cerebral Palsy, but he would order an MRI to be sure.
MRI done, results in hand, we received the life changing news. Part of me already knew the results, but part of me was hoping, wishing, and praying that CP wasn’t the issue and that there was a medication that could make her all better. No, not the case! CP is not curable.
Cerebral Palsy (CP) is a general term for a neurological disorder as a result of a brain injury. Prematurity is the number one cause of CP, second is a doctor’s mistake, and lastly, genetics.
Jada’s CP was caused by her prematurity. Jada is completely dependent and experiences many issues as a result of CP. Some side effects of Jada’s CP are: seizures, asthma, chorea (uncontrolled movement disorder), hip dysplasia (hips come out of socket), sleep apnea, vision problems, and the inability to walk or talk.
When you think of seizures the first thing that comes to mind is convulsing. Put a spoon or wallet in the person’s mouth so he/she won’t swallow their tongue. However with Jada, there is no warning or convulsing. She just stops breathing, and turns blue. When that happens, let the countdown begin! She has one minute to take a breath, if a breath is not taken within one minute then start CPR, and call 911. We’vedone that a couple of times!
If she still isn’t breathing three minutes in, then a special medication has to be administered to revive her. Now you are probable thinking to yourself, (A) I wouldn’t be able to keep the process straight, (B) CPR; (C) I can’t do this. Believe you me, when you are in that situation you would be amazed at what you can do and how fast you react. It will come to you naturally. Yes it’s frightening, but when it’s your child, you do what you have to do.
Jada’s seizures are considered life threating because they can cause instant death or cardiac arrest. My husband and I never think about that. Our main goal is to keep them controlled, so that she can enjoy life. Jada’s seizures have led to induced comas a couple of times because her brain would not stop seizing.Â Doctors were at the point that they were going to cause her brain to go brain dead, and reboot her like a computer to see if that would stop the seizing. If that didn’t work, then they were going to remove the part of the brain that was seizing, which would result in more brain damage. God knows she didn’t need any more brain damage. But Jada being Jada, and God being God pulled her through at the very last minute. Thankfully, after incorporating a new seizure medication that stopped the seizing, Jada woke up with the biggest smile on her face. Faced with extreme measures, a higher power always seems to step in at the right time.
I never imagined hearing the phrase, “what are your wishes, because your daughter won’t make it through the night.” Talk about an out of body experience. Jada was four when a doctor in the PICU sat my husband and me down and uttered that phrase to us. I saw his lips moving, I heard what he was saying, however I wasn’t sure if he was talking to me. What? How did we get here? I don’t understand! It was a cold that caused an asthma attack that spiraled into pneumonia that turned into aspiration pneumonia, which resulted in Jada’s inability to breathe on her own. Her organs were beginning to fail, because her body wasn’t producing the natural substances it needed to function. Huh?
Two weeks in on life support, the doctors had one last medical trick up their sleeve to try; a machine they had purchased five years before our arrival and never got a chance to use until now. The machine generated the substances that the body would naturally produce to function. She was hooked to that machine for a few days when her organs began to function on their own. A few days later, she was able to breathe without machines. Things were looking up. A few days later she was able to peel her eye lids open, mommy and daddy were greeted with the biggest smile. Talk about a cup runneth over.
Another part of CP is hip dysplasia. When Jada was three, we discovered that Jada’s hips were out of socket and the only course of action we were told was surgery. Surgery it was! Both hips were put back in their socket. Little did we know the chaos that would ensue. The stress of having both hips broken and operated on at the same time led to uncontrolled seizures and involuntary movements, internal bleeding, and three months of living between a U of M hospital room and a hotel.
In 2010, Jada’s very observant physical therapist noticed that one of her legs was longer than the other. She had an appointment with her orthopedic doctor (mind you Jada has every specialist in the book) and darn it, the right leg was 75% out and the left one was 30% out, again.
We consulted with a different surgeon who had a different approach. She only had the right side operated on leaving her in a full body cast for five weeks.
I must say, it wasn’t as bad as we anticipated though. This surgery compared to the first one was like night and day. A different surgeon and a different approach made our lives so much easier the second time around. And I have wonderful sisters took turns taking time off of work to assist us. Family is so special!
Jada will have the left side operated on in August, and hopefully that will be her last surgery. It will be by the same surgeon with the same approach so we are confident it will be smooth sailing. My husband will be confined to the house with our daughter for five weeks though. I must get those boring, beige, bland walls painted in our house, and maybe he won’t go so cuckoo.
Jada has experienced so many life changing events in just seven years of her life, much more than most people. There was one thing that CP hadn’t taken away from Jada though; her ability to eat by mouth (even though it was all pureed food). However, even that was taken from her recently when an episode caused by the chorea (involuntary movement) destroyed that. As a result, Jada now has to be fed through a feeding tube. That was more devastating to me than anything, knowing that I could no longer be able to give her pudding, yogurt, and sweet potatoes anymore.
Her food comes in a liquid now. How is she supposed to survive and grow? Eating was the one thing that was all her very own. She loved food! This situation continues to be a huge adjustment for us all. Every so often she opens her mouth waiting for food. It just breaks my heart. She doesn’t understand why she can no longer can eat by mouth. How do you tell a seven year old, who is mentally 15 months old, that she can’t be fed by mouth or it could kill her? I haven’t figured that out yet. Any advice? In my heart I know that she will get that ability back. I will be able to give her some of her favorite foods again via mouth, and only give her medication through the tube. Time, faith, and patience!
Sometimes it seems like God has to break her down to build her up. Through everything, and I mean everything, that Jada has gone through she has shown an incredible amount of strength, courage, and faith. I draw my strength and faith from Jada. No matter what she goes through she always gives us a smile assuring us that she is alright and that she is in good hands.
Since Jada’s diagnosis we have lived in reactive and preventative mode, never stopping to try things outside of our daily routine. Cerebral Palsy has taken, in my mind, everything from her that I never thought that she would be able to do. Little things that most parents get to experience with their children like dying Easter eggs, or riding a bike. I just assumed that I would never be able to do those things with Jada, therefore I never tried. (Shame on me!) But lucky for us, someone decided to give it a try.
Jada’s Physical and Occupational Therapist decided to test the waters to see if Jada could ride a special modified bike during one of their sessions. Jada did so well that they nominated her to receive an adaptable bike.
Once a year, Beaumont Hospital partners with the Children’s Miracle Network to give children with special needs adaptable bikes, at no cost to the families. What a blessing to our family this was going to be, considering adaptable bikes run anywhere from $3,000 to $6,000, and not covered by insurance.
Jada was happy the morning of our appointment, and I was so excited that she was getting fitted for her first bike. I thought about all the bike trails I was going to take Jada on. I thought about how much fun we were going to have pushing Jada on her bike around the neighborhood. And most importantly, in addition to this being used for therapy, I was excited thinking about how much Jada would be able to enjoy it and have fun!
Jada was all smiles when we arrived at our fitting appointment. It was Saturday, sunny, and 78 degrees at 10:00 in the morning. Mr. Ryan, Jada’s therapist greeted us as we approached the registration table. Mr. Ryan said, “Hey Jada!” It was lights out for her though. Jada’s smile quickly faded, she fell asleep, and the snoring began. I guess Jada’s thought was, “I just saw you two days ago; there is no way I am working out today.”
Jada is a smart cookie, she will instantly fall asleep when there is something she doesn’t want to do. I guess that’s a trait that comes with her disability. Heck, sometimes I wish I could fall asleep on the fly like that!
Jada falling asleep didn’t stop us though. We picked out a bike, put her on it and paraded around the parking lot. Mom snapped pictures, and Dad walked along the side of the bike. Mr. Ryan held Jada’s head up as the representative from the medical equipment company took measurements and made adjustments. It was amazing to see all the children that were selected to receive a bike trying out different bikes and getting fitted. Some were beaming from ear to ear, and others were screaming, kicking, and crying, and then there was Jada, catching up on her beauty sleep.
As our appointment ended, we loaded Jada back into the car. I climbed in next to her and as I strapped on my seatbelt and turned to lock it in, and low and behold Jada was wide eyed and smiling at me. All I could do was shake my head a giggle!
Bike day was so special to us because I never thought that Jada would be able to experience anything like this because of her disability. Man, was I wrong! Jada will be able to go bike riding with her cousins and be a part of the adventure. She will be able to use a different form of transportation other than her wheelchair. And most importantly, she is getting something back that her disability can’t take away from her.
My family is extremely grateful, and thankful for this wonderful gift that Beaumont and the Children’s Miracle Network has given us.
Jada’s bike is custom made to fit her and accommodate the lack of muscle tone in her upper and lower body, and in her head and neck. Jada’s electric- purple- bike arrived on June 22nd, just in time for the summer. I can’t wait! Bike trails have already been selected, just waiting for us to go on an adventure. I can’t wait!