Wednesday, February 23, 2011

Bio Chemical

Well Bio Chemical Disease control called. Now we need to do a muscle biopsy for Kenny. Sheesh, another test another wait. The wait just for the appointment, because he'll have to be sedated, is at least 5 months away. I told the nurse to PLEASE write on the requisition that MOM has requested that Kenny be put on a cancellation list. Hopefully this will be seen, and we get a call soon. I know that at the end of all of this testing they may just find nothing. But, I figure what do we have to lose. I have also requested to the pediatrician to send the whole family to genetic testing. Not sure if all the kids are having something that relates to them all genetically or not, but I feel it would be interesting to find out.

Sunday, February 13, 2011

Another birthday in our house!

Three years ago today, I was a very 35 weeks pregnant, with my blood pressure rising! 160/100. So the dr admitted me. When I got there I was already 3 cm dialated. They broke my water, and 2 hours later at 7lbs 4oz, a Courtney Joy Taylor was born. This is the only birth that Gary got the honour of cutting the cord. This is the only birth that we got to hold her for a minute before they took her to the Special Care Nursery. She stayed for 6 days, had an NG tube dropped for 2 feeds, and then home to the hectic Taylor household. She has developed "typically", actually a bit quicker in some aspects as a typical kid, but who wouldn't with all of the exposure to all of the therapy from the older two. She got to go to Pre-school a little earlier than this pre-school usually does. She is our snuggle bug, and our Courtney!

Happy third Birthday Courtney!

Saturday, February 12, 2011

Happy 5th Birthday to my CHERUB!

It is so hard to believe that five years ago today our journey started. Oh how our lives have changed. I certainly do NOT take anything for granted anymore. There were so many things that had happened and have happened to make me realize that we don't have the control over our lives that we think that we do.

My baby girl Kristen Marie Taylor was born today. Five years ago. We don't even have an accurate birth weight for her. I do know that her blood type is A+. Only because everyday I would ask, How much does she weigh? I had no idea how serious Congenital Diaphragmatic Herina's (CDH) were. He right lung was a 1/4 of the size that it should be. Her pulmonary hypertension put her on ECMO (heart and lung bypass) for 12 days. The ECMO along with the pulmonary hypertension caused her kidney's to fail. A pic line caused a blood clot in her left leg, causing a small stroke in her visual portion of her brain. The ECMO caused multiple brain calicfications. Her PDA being open caused her to stay on high frequency ventilation for almost a full two months. It also caused her kidney's to work harder until they fixed it. Within that week after the heart surgery she came off of ventilation, and dialasis. So excited over PEE!! LOL! The ventilation caused many years of feeding issues. The feeding issues caused failure to thrive threatening us with the possiblility of G-Tube feedings. We dealt with many issues around reflux (GERD, common with CDH). She never crawled, she butt scooted. Her hearing was taken from her when she about 6 months old, risks with ventilation and ECMO and CDH. We need to remember that ECMO saved her life. It may have done damages, but it gave me my miracle. She was implanted with a cochlear implant at 21 mths old. She eventually walked at almost 23 mths old. Her depth perception made her very cautious. She had troubles changing from one area to another when looking at carpet to laminate. She was diagnosed on the Autism Spectrum Disorder. I wished soooo hard to know, What is she going to be like at 5??!! I just wanted to rush the time so I could know! Well here we are FIVE years later.

Kristen is registered for Kindergarten in the fall. She is still working on speech sounds, but she is signing up a storm! She is pretty much always happy. She gets in trouble just like any kid does. She is a walking miracle. She is loved by her brother's, sister, mommy, daddy, and friends and family a like. Everyone around her is so proud to see the amazing changes that she has been making lately!

My little girl is FIVE!!!! Happy Birthday Kristen!
This link above will show a previous post that show's Kristen's story.

Monday, February 7, 2011

Featured in the BCFHRC newsletter

Such an honour to be a feature family in the newsletter for BC Family Hearing Recource's the article for your reading pleasure! So cool! Didn't really know that we were all that!

The Taylors – Together Every Step of the Way
Bobbi and Gary Taylor and their family have been receiving services from the BC Family Hearing Resource Centre since October 2006 when their 2nd child, daughter Kristen was diagnosed with hearing loss.
Below are some excerpts taken from Bobbi’s blog celebrating their 6th Wedding Anniversary, in November 2009. Bobbi also shares with our readers, their family’s journey to date.
Six years ago today, we said I do.
Six years ago today, we had no idea where we'd be.
Six years ago today, we began a journey
That most could not begin to imagine
Six years ago today, we began to plan our family.
It wasn‘t too long after the planning began that our son, Joe joined us in August 2004. Seven weeks early, he was so small and perfect in our arms. We took him home on his 19th day and were delighted to watch him grow, smile, walk, and giggle.
Joe was 10 months old when we found out we were pregnant with our first little girl. When Kristen was just 20 weeks in utero we learned that she had Congenital Diaphragmatic Hernia (CDH)—there was a hole in her diaphragm on her right side, allowing her liver and small and large bowel up into her chest cavity. We were told that she had a 50/50 chance of survival. She joined us in Feb 2006; three weeks early. We could not hold her, we did not even hear her cry but, she fought hard, and succeeded; we were able to take her home after three months in hospital, on my birthday. However, due to her CDH, we spent a lot of time at the hospital. Kristen was given a variety of life-saving medications, received ventilation and underwent ―extra-corporeal membrane oxygenation‖ or ECMO, a highly invasive procedure for treating insufficient organ function.
Due to all of this, Kristen took part in a routine hearing screening which led to the further diagnosis of profound bilateral hearing loss when she was just 7½ months old. This was definitely not easy and was unexpected: however we know that if it hadn‘t been for these life-saving measures from a large health care team, she wouldn‘t be with us here today. Shemay be deaf but she‘s alive! Knowing that she‘s overcome such odds, we don‘t take for granted that our baby is here with us. She is almost five years old now, and we‘re so lucky to have her. There may be complications, delays and challenges all related to her rough start at life, but she survived and we have made it, together.
We were receiving good services to help Kristen with her hearing loss and were using hearing aids. Then, in November 2007 Kristen received a cochlear implant which was activated a month later. As with the hearing aids she had previously worn, we had to work to keep her equipment on, to teach her signs and words, not to mention helping her with her other challenges such as eating and walking.
It took a lot of appointments with various professionals but I‘ve learned that therapy does not rule the roost. While it is an important part of our children‘s lives, there is more to life than therapy. Day to day life is therapy…therapy is not just one hour a week…I have to carry their therapy into the whole day…it‘s how I apply what I learn in that one hour that helps me throughout the day. That is what makes a difference in their lives. We, their parents, make a difference in all their lives.
Even after all of the therapy, feeding issues, hearing loss, and the constant worry we decided that our family still had room for more. We welcomed Courtney in February 2008. Five weeks premature, she too was so small and so perfect. This time we got to hold her right away and my husband, Gary got to cut the umbilical cord! We had a very busy household with three thriving children.
I have come to realize that diagnoses are just words; they do not describe who my children are. I don‘t focus on their diagnoses. They are children first. I have also come to realize that I can‘t control outcomes, but we can work hard to make the most with the cards we have been dealt. I encourage the children to try anything and everything. I truly believe that the world is their oyster and I try to ensure that they have normal experiences outside of formal therapy sessions.
As a family, we love camping and we spend many weekends enjoying the outdoors together. On the weekends our children are excited to be spending time together doing family things. Even though it can sometimes be tough, we know that keeping a sense of humour has helped us through a lot. And so… we have learned to expect the unexpected.
When Courtney was just five months old, Joe was diagnosed with Pervasive Development Disorder not otherwise Specified (PDDNOS) which is one of the disorders included under the umbrella diagnosis of Autism Spectrum Disorder (ASD). This news was hard to take at first. We had had concerns about Joe and had suspected that something was ―off‖ or ―not quite right.‖ After all the appointments and assessments we thought we were prepared but, actually hearing the words and reading them in a 15 page report was very hard. The truth is reality sets in and we had no choice but to move on and ensure that Joe receives the help that he needs.
Amongst others on the large team that helped us with Joe, we worked with Linda Spencer, Speech and Language Pathologist, with Surrey Speech and Language Services. It was great that we could access services for Joe and Kristen in the same place. We feel comfortable at BC Family Hearing Resource Society. It is like our second home and we know we have support there. However, it is through the networking with other families and reaching people online that I have gained the most outlet and support. It is through helping other parents with their experiences and challenges that I know I am not alone in my situation.
By the time Courtney was 11 months old we thought that our family was complete...but what a surprise when we realized someone else had a plan for us—we found out we were expecting a fourth child. But, remember what I said about expecting the unexpected? Before Kenny came, we learned that Kristen too was on the Autism Spectrum. This diagnosis didn't seem to bother us as much as it did when we first found out about Joe. This time we knew that there would be a great system of supports for us to help her make progress with her skills and we were confident that she would succeed, after all, she had already proved herself to be a survivor!
Kenny joined us 8 weeks early, on Aug 20, 2009. We thought the others were small!! Yikes, not so much! Kenny was so tiny and perfect. We waited for Kenny to come home and kept waiting and waiting. His Bradycardia (heart rate slowing) kept continuing, so the doctor did a head ultrasound and found significant brain injury. Wow! This news hit us like a ton of bricks. After we gathered ourselves, and got all of the information we could, we again had no choicebut to move on from the diagnosis and accept Kenny as we had our older children. Again, we had more faith this time that there would be health care professionals who care about our baby and would monitor Kenny‘s progress and hopefully keep him ―on track.‖ After waiting 47 long days and traveling back and forth from our home in Cloverdale to Surrey Memorial Hospital in Surrey, we were thrilled to bring him home.
Today, Joe is now attending school full time and receives one on one support in the classroom. Kristen is now 5 years old and 4 years into hearing with her CI. We are very pleased with the progress she has made. The CI provided access to hearing and with all the hard work that has followed she now has the ability to listen and to learn spoken language. She attends the PALS program at BCFHRC three days a week and she is able to go to her community preschool three days per week. Next year she will go to Kindergarten at the same school as Joe. We are thankful to have a one on one worker who devotes a lot of time to Kristen‘s needs. She really has become a good friend and a part of how our family functions.
With Courtney, having no developmental challenges has been amazing. While I am thrilled that she is healthy and thriving, I have had concern that having siblings who receive so much of our attention through special appointments all the time takes its toll on her. While Courtney has been able to participate in services that Kristen has received through BCFHRC, we were glad when we were able to enroll her in a community preschool classroom of her own so that she could have her own special thing to do where she can be independent. She‘s doing so well but, boy, is she a little monkey.
Kenny is now seventeen months old and we have recently been told that he will have developmental delays (by now this seems almost ―normal/typical‖ to us). He is also visually impaired, has infantile spasms (seizure disorder) and hydrocephalous. It is a lot to contend with and despite all our experiences with his older siblings, finding out he will have gross motor delays, (cerebral palsy) and will probably never walk has still affected us greatly. It has helped me through that Gary and I have been going through this together, every step of the way. We have certainly been tested over the past six years.
Together we have found that routines are important in our family. We need the routines so we can create space for ourselves. We are still so in love. Gary is fully engaged in his father role. Even after working all day at our family-owned landscaping business Gary comes home and immediately engages in one on one time with the children. He takes the children on outings and to their various after school lessons in the community.
more from Bobbi’s blog:
Six years ago today, I never would have guessed that we would have the ups and downs;
the good, the bad, and the ugly.
We are still in love, (some days more than others) but, in six years as a couple,
I don't think that our relationship could have been tested more.
We have become so strong for our kids and because of our kids.
Six years ago today, I would have never guessed that my life partner, best friend, husband, and father of my children would help to create with me such wonderful children; our family.
Six years ago today, I married my best friend!