Sophia's Story

As many of you know, in very early August, we sadly learned that Sophia would face some very difficult challenges in her life. She was just 8 months old. After sharing some growing concerns about her development with our pediatrician, and in particular, the obvious use of the left side of her body over her right she was immediately referred to a pediatric neurologist with an MRI scheduled for the following day. We learned the very next day that Sophia's MRI was abnormal. Our lives were immediately turned upside down. In less than a week's time, Sophia was diagnosed with moderate cerebral palsy. In the few short months since her initial diagnosis, I am proud to say that she has made some wonderful progress! At this time, she receives physical and occupational therapy weekly at Blank Children's Hospital and in our home through Early Access (AEA). She also qualified for a nutritionist and has a feeding goal to address some of her issues with taking liquids and eating. While times have not been easy and we were quickly forced to learn a "new normal", we continue to have hope each and every day. Each and every day our little girl continues to give us smiles and laughter... that in itself is a blessing and a miracle. My wish for my children has always been that they will be happy in life. So far, I believe they are. While I know the road for Sophia will be long and difficult at times, I believe that she is a fighter and that she will defy odds. She is an amazing little girl and we could not possibly love her more. I thank God for each of my beautiful miracles. Together, we will triumph!

I will do my best to keep our blog updated so that those of you who are following Sophia's progress and health updates can do so. Your support, encouragement and kind words have meant so much to us. I will also continue to put up photos of our family and all that we are doing so that you may enjoy seeing both of my beautiful babies grow!!

August 8 ~ In the photo above, our sweet Sophia is waiting for her MRI. She was tired and hungry. She had to fast due to the anesthesia. We were able to be in the room with her up until she was given the anesthesia. After she was under, they intubated her and put in an IV as well. I was able to get her to sleep in my arms before they came for her which helped as she did not fight the mask, so we were told. We were reunited with her in recovery a little over an hour after they took her from us. She was not a very happy girl at that point. She was so hungry but wouldn't eat because her poor little throat hurt so bad. She kept crying and crying and it broke my heart. We were finally able to get her to eat a little at home hours later and then she was much happier.

August 8 ~ Later that afternoon, after taking a bottle and napping, she was back to being her happy self!

August 10 ~ On the way to the hospital for her EEG. An EEG was done to determine if she was experiencing any seizure activity during wake or sleep. In order to do the test, we had to sleep deprive her the day and night before. Needless to say, she was one tired girl!

This photo was taken during the wake cycle of the EEG. She was monitored for 70 minutes but the whole process took much longer. You can imagine the time it took to get her hooked up to all of these monitors. Surprisingly, she did very well as the tech put them on her. She did not do as well when they were taken off. I was still trying to get the glue out of her hair weeks later. During the test, I was able to lay with her on the hospital bed. It was one of the longest hours of my life. We learned the following day that her EEG was normal!! I can not describe the relief that we had from this news. We have been counseled that up to 50% of individuals with cerebral palsy will experience seizures and they can come on at any time. We continue to pray desperately that seizures will not be a part of her life.

Late August/Early September ~ Another miracle! Sophia started learning to sit with support!! She always has a happy "cheering" big sister nearby! :)

Mid September ~ Sophia began sitting independently!! This is HUGE for her! We were told that if she were to sit independently by the age of 2, she would most likely walk independently eventually. God is good!!

October ~ Sophia continues to sit independently! She continues to work on rolling over and strengthening her trunk and right side through weight bearing exercises. We work on getting into and out of sitting, practicing hands and knees... all with support, of course, but she is beginning to tolerate it! Her therapists are not sure at this time if she will crawl (they think she may go straight to standing), but we still have high hopes. Crawling helps with many, many fine motor skills in the future. She also works a lot on developing her fine motor skills such as grasping and picking up toys and food, holding a cup, playing with toys, banging things together, clapping and pointing. She is pointing in this photo which she started doing with her left hand towards the end of September. She very recently started pointing with her right hand as well! This is another HUGE milestone!! She works so hard in therapy and all of her therapists (Mommy, Daddy, and Isabelle included) are so proud of her progress! I say it all the time and will continue to say it... she is our little warrior!

Other news on Sophia's journey:

• September 12 ~ Sophia saw a pediatric neurologist at The Mayo Clinic. Though we wish it weren't necessary, we were thoroughly impressed by the doctor and our overall experience at Mayo. This appointment was to obtain a second opinion. At this time, Dr. Renaud, at Mayo, concurs with our pediatric neurologist, Dr. Narawong, here at Blank. Both doctors believe that it is likely cerebral palsy which is non-progressive (meaning she will not get worse with time). However, because she is still so young, many other things have to be ruled out and the only true "test" is time. Dr. Renaud, at Mayo, is a specialist in leukodystrophy, which is a type of injury to the brain that can result in a degenerative disorder (meaning it will progress and get worse over time). There is some concern that Sophia could have a leukodystrophy. We are praying desperately that this is not the case. We should know more in subsequent MRIs. In most cases, children do not receive a true diagnosis until the age of 2 or 3 years. All of her doctors are leaning towards cerebral palsy though and that is what we are holding on to...
• September 13 ~ Sophia saw a pediatric oncologist/hematologist to help determine if she might have any blood conditions contributing to the abnormal MRI. After a very long and scary appointment, tests were ordered and my lil' babe was stuck with needles again. We have since learned that the doctor does not believe that she has any congenital bleeding disorders. Chapter closed! God is good!!
• September 15 ~ Sophia met for the first time with her physiatrist, Dr. Ramsey at Blank Children's Hospital. We all loved him from the start, especially Sophia! He explained that as a physiatrist, he is a cross between a neurologist and a orthopedic surgeon. He also shared with us that he has cerebral palsy and hemipareisis (CP that affects one side) like Sophia. Talk about hope for the future!! :) He also studied her MRI and believes that it is most likely cerebral palsy. He will continue to see Sophia and will oversee all of her therapies and any surgeries or medications that she may need in the future. We will meet again with him in December after her next MRI.
• September 16 ~ Sophia had a hearing screening done and passed!! It will be repeated in 6 months.
• October 6 ~ Sophia was referred to a pediatric opthamologist and we were thrilled that it was Dr. Suh (Isabelle's eye doc)! He is wonderful! He was happy to share some good news with us... as he looked at the optic nerve, he did not see any leukodystophy in the optic nerve. This is promising!! Sophia does have to get glasses, but that seems like small potatoes these days. I will be sure to post pics of her in her new specs once we get them.
• October 24 ~ Sophia will have a feeding evaluation done at Blank. She has really been struggling to take in any kind of fluids and has developed some trying behaviors with her solids. We are hoping that they can help us even more than the nutritionist has. She is definitely a peanut still... hanging on to the 3rd percentile, but it is dehydration that scares us most. :(
• December 1 ~ Our Sophia Grace turns 1 year old! This is bittersweet... where did the time go?!
• Week of December 5 ~ Sophia will have her second MRI done. Once all of her doctors are able to compare her first MRI with the second, we hope they will have more information. We are praying for the best possible outcome... that there are no signs of worsening conditions. We ask for your continued prayers for Sophia. It will be a very trying week, I'm sure.