Before I get too far into this post, I would like to thank all of you for your prayers. We have such an amazing community of family and friends behind us, cheering us on and praying for us. You boost our family up so much! In this post, I wanted to update all of you on the condition of my little sister, Terinda. I'm sorry if this is a review of information for most of you....for others, welcome to the info! =)
As many of you know, my mom learned she was pregnant again in January-February of 2008. We were all so excited and prepared to welcome this new blessing home. However, in the summer of '08, we learned that the baby had a rare brain malformation called Dandy Walker Syndrome. This meant that she was missing 80% of her cerebellum, which controls speech, movement, and a host of other important things. We later learned that her skull did not close correctly, resulting in a condition called a hydrochepalus in the back of her head. This is when the cerebral spinal fluid flows into a sac at the back of the head.
Although many people would abort babies like my little sister, our family feels that life is a privilege that everyone has a right to enjoy, so my mom continued the pregnancy.
Terinda Payton Crosby (named for my mom's older sister) was born by C-section on September 8, 2008-Our Lady's birthday. Thus began a long string of surgeries and medical trauma for this brave little girl.
Her first surgery removed the encephacele at the back of her head, in late October '08. By this time, it was the size of an avacado.
Her second surgery was to put in a shunt, which drains out extra spinal fluid from her head into her stomach. Her third surgery was a shunt replacement, as the first shunt had failed. This is usual-often shunts will have to be replaced. This surgery occurred in early 2009. Her fourth surgery was to repair her eyes, which were crossing because of the shunt failure. This surgery was very successful-no more crossing of Terinda's eyes!
Night before 1st surgery. See the encephacele?
Right after the surgery. Poor baby. :(
Lucy holding her at the hospital
Back at home. She has hair in this picture!! See the eyes?
Post eye surgery. Nice shades, huh?
After one of the surgeries....she got that bear from the ambulance driver & still has it.
When this picture was taken, she had just started crawling.
Cutie pie!
Night before her last surgery. We spent that night with just hanging with her and preparing for the next day.
Just before the surgery-she is in the waiting room! Terinda is so cheerful...it's pretty amazing.
Right after the last surgery. Terinda is watching VeggieTales @ the hospital.
Terinda dealt with several emergency room visits and hospitalizations due to seizures but now we know she is prone to febrile seizures and the last one she had was Good Friday 2010 (which Mommy and Daddy decided to handle on their own and keep her home).
Then she had a shunt "revision" to add a secondary catheter to draw fluid from the back of her head more effectively.repaired the shunt once again, in the middle of 2010.
Her sixth and most recent surgery repaired the hole in the back of her head. With the help of computer 3D imaging they created a patch and secured it with Titanium brackets. The back of her head is now solid. This surgery was an amazing success! She only stayed at the hospital for two days, which was not at all expected. The surgery occurred in November 2010.
So, where are we now? Terinda is now 2 years old, and progressing wonderfully! Although not walking by herself yet, she can definitely get around, be it by crawling, walking with someone holding her hand, or on someone's hip! She talks like a regular toddler, getting her point across in the needed ways, whether that be by politely asking one of her siblings for a toy or more often, screaming to get the toy.
Terinda has weekly physical therapy to work on her hypotonia (low core muscle tone) and she really enjoys this.
Terinda's heart has a right side aortic arch and she has a strong heart murmor and a vascular ring. Nothing is scheduled right now but her cardiologist thinks surgery may be in the future to repair the vascular ring so we will keep you posted on that.
God's amazing grace to our family is clearly shown to us in the gift of this little girl. We are constantly amazed at the amazing creation of the human body and brain and how God can use his creation in amazing ways that draw us to him.
No one knows what Terinda's future holds. Because of the rarity of her condition and associated issues, no one can really give a description of what will happen next so stay with us on the journey and pray for us through the good times and the difficult ones please.
Again, thank you all for your prayers. They are so appreciated!
In XC,
Cady
One of the most recent. This is after all six surgeries. We are constantly humbled by this blessing in our lives! Every day, we thank Him for giving Terinda to us. Soli Deo Gloria-Glory to God Alone!
