In August 2005 our families lives forever changed. We lost our second child, our first son, at the age of 2years due to complications from congenital heart defects.
He had been waiting for a heart transplant but a heart was not available. After the loss of our beloved Xavier we were reassured by doctors that we could conceive a healthy child. Our family was mourning and our first child Chayanne was devastated by the loss of her baby brother, he was her best friend. In early February of 2006 we learned we were pregnant.
Our family was ecstatic when we found out we were having twins. We felt truly blessed and a little in shock. Nevertheless, we began preparing for out little bundles of joy.
The pregnancy was totally uneventful until 28 weeks when suddenly in the early hours of the morning I woke up with labor pains. When I arrived at the hospital a short while after I was told that I was fully dilated and would have to undergo an emergency c-section to deliver the boys.
Donovan and Avery were born on August 11th 2006. They weighed a little over 2 1/2 pounds. They were extremely small. Due to the rapid progression of my labor and emergency c section the boys were delivered before I could receive steroids to help mature their lungs and prepare them for an untimely delivery.
The boys spent over 70 days in the NICU. During their stay they both were treated for more than one blood infection caused by contamination of central lines they had in to recieve IV nutrition since they were too small to eat.
They both had difficulties coming off of the ventilator and breathing on their own. They required oxygen for a long period. Donovan had a grade 2 bleed in his ventricles early on and Avery developed a cyst somewhere in his brain. Despite all of the set backs Donovan and Avery made it home.
Donovan had tremors to both his legs and Avery developed them shortly after coming home. They were hard to console. Due to frequent breath holding spells in the hospital they were sent home on Apnea monitors.
We took the boys to alot of specialists and started them in rehabilitative therapy to help them "catch up". We were constatly told to just give them time and they would catch up to other children their age but it became evident that something was wrong.
The boys were unable to roll over or sit up and their legs had become increasingly stiffer. They tended to arch alot but we were told this was because they had severe gastroesophageal reflux. Finally at a year of age we wanted answers. We had been pacient enough. We requested a neurology consultation.
Although we knew there was something wrong we were heart broken to hear the diagnosis and irritated by the response that followed.
Donovan and Avery had spastic diplegia a form of cerebral palsy. we would have to "give it time"to see what progress they will be able to make. Thus we increased their therapies from twice weekly to three times weekly. For us this meant more therapy and expenses and alot of waiting. We were not given any difinitive answers in regards to the boys potentials just told that they would walk in some form by the age of 5years.
We have caught them assisting each other to get on top of the table on chairs etc. We are overjoyed to see them functioning the way they do but realize that they need so much more therapy to achieve independence.
They cannot dress or undress them selves they require total care when it comes to bathing and still are in diapers.. They cannot sit appropriately with their legs in front of them unless they are placed that way by someone. Through their entire short lives they have endured hours of therapy speech, physical, and occupational. We have made sure they received it at any cost to us even when our insurance exhausts. Currently our insurance covers 6-7 months of conventional therapy meaning 1-1/12 hours a week of each of the above therapies the rest is out of pocket for us at roughly 35,000-40,000 dollars annually.
Recently we noticed that despite all of the sacrifices Donovan s leg was turning inward and his posture was getting worse and his brother Avery was overall weaker and not making advances as we expected. Conventional therapy was just not enough thus I did alot of research and was lead to therapies 4 kids for intensive pediatric therasuit therapy.
We decided that conventional therapy was not enough to correct and or prevent other complications in regards to the boys physical capabilities. So we utilized the last of our savings and credit to pay for one month of intensive physical therasuit therapy. We were astounded by the results and dismayed at the same time knowing we would not be able to continue this therapy for our sons due to lack of additional finances.
My sons had never been able to get out of their carseat when the belt was unlatched and after two short weeks in intensive therapy they could. My son Donovans leg was not twisting inward as before and his posture had improved dramatically.
Even the therapists that had been treating the boys since they were born noticed the dramatic change and commented on the increased muscle strength, increased endurance for therapy and improved posture in both of our sons.
I do hope someone out there is able to assist my little miracles in achieving as much independence as possible they deserve a chance to be as functional as possible. It breaks my heart to know that there is a therapy that can help them make amazing strides but I can not afford it especially due to the fact that both the boys need it. We know this therapy works we have tried it unfortunately to continue it we need some ones assistance in finding the funds.
Thu, Apr 16, 2009 6:40 am
Hanna was diagnosed with Cerebral Palsy at 10 months old. She was not able to sit up or crawl at that time. Her therapy started about a month later with physical and occupational therapy. By the time she was three, she was able to struggle a combat crawl and sat in a slope. Then I found Bright Steps Forward, I was able to get her signed up for a session and these therapists where doing exercises with her that I have not seen the other therapists do. The suit, I planned on, but WOW, did she seem to improve. She has been in two full sessions now and she just turned five years old. She has more abilities than disabilities. Yes, she still has cerebral palsy but she is walking using a walker, she rolls herself around in a wheelchair, she is potty trained and she sits up straight. Her confidence has shot through the roof and she wants more.
I want to thank all the therapists and administrative staff
for all the love, patience and support you gave my daughter.