Sophia Update ~ October 27

As I mentioned in an earlier post, Sophia has continued to struggle with eating and drinking. She has always been a kiddo who took in well below the low end of the "typical" range of fluid. Recently, (in the last 3-4 weeks), she had decreased her daily fluid intake to a substantial low, only taking in 7-9 oz. a day, which includes the Pedialyte that we've been feeding her by syringe. There are obvious concerns of dehydration and we are at our wits end. She has also been gagging excessively throughout her meals and projectile vomiting after meals. The gagging happens frequently at all meals, but the vomiting usually only once a day. However, it has become a daily thing and she is vomiting large amounts (sorry to be crass). Due to concerns for her growth and weight and because it's a "new" behavior for her, she was referred to a pediatric gastroenterologist. This appointment followed her feeding evaluation at Blank. Here is what we learned:

Monday, October 24 ~

At her feeding evaluation, the therapist observed her eating a variety of foods of all different textures, preferred and nonpreferred. She observed drink (or rather not drink) from a bottle, several sippy cups, open cup, and syringe. Overall, she feels that Sophia is moving her food well, chewing and swallowing appropriately. All of these things historically can be difficult for children with cerebral palsy or other neurological conditions. She does feel that Sophia could possibly have some "strength" issues and so some feeding therapy could be beneficial, but overall, her feeling was that there is something else going on. She wanted to have Sophia seen by the GI doctor before we proceeded with a plan for therapy.

Thursday, October 27 ~

Sophia was seen by Dr. Manini, a pediatric gastroenterologist at Blank Children's Hospital. He was very well read on Sophia's case history and had spoken to the feeding therapist that saw Sophia earlier in the week so we were thankful that he seemed to know quite a bit about her before we had to dialog through everything. After further discussion and an examination of Sophia, he presented us with two likely diagnoses: severe reflux or a disease called eosinophilic esophagitis (EE). Both can be treated, but the measures to treat can be pretty involved. Reflux in children with cerebral pasly is very common so this is likely the culprit. This would also explain why she has never liked taking her bottles and has always struggled with fluid intake. Unfortunately, it is unlike "typical" reflux in that it doesn't disappear around 6-9 months of age. In fact, it could be present throughout her life. It is possible that the reflux was "silent" up until this point, meaning that she was experiencing the pain and discomfort of reflux but it wasn't coming all of the way up until recently. She will go through several more tests in the coming week and will be hospitalized overnight for one of the tests. She will have the following performed: a swallow study, upper GI, and an upper endoscopy and PH probe study. It is the latter that she will be hospitalized for as they have to use general anesthesia for the procedure and she will have an ng (nasogastric) tube in for a 24 hour period. (This is a tube that goes from her nose to her stomach.) We will know by Monday when all of the tests will be scheduled for sure, but they will begin next week. Dr. Manini discussed different treatment options if it is reflux or EE, those of which include, medication, therapy, and as a last resort, a surgery that would prevent her stomach contents from moving back up into her esophagus . The surgery would be a very last resort and is often accompanied by a lot of unpleasant side effects, especially in children with neurological disorders and so, for obvious reasons, we pray that it doesn't come to that. The other thing he discussed as a likely possibility is putting in a g-tube (gastrostomy) which is inserted through the abdominal wall and into the stomach to help supplement Sophia's fluid intake. This may have to be done if her fluid intake does not increase soon. While we do not wish for this to happen, we are desperate and it is difficult to be in constant fear that your child is going to become dehydrated.

Thank you for your ongoing support, prayers and kindness. It means more than you can know. Our prayer requests at this time would be that Sophia begins to tolerate her solid food again without gagging and becoming sick and that she begins to take in more fluids. We also pray that she will get through these tests like the warrior she has proven to be. We love her so much and hate to see her going through all of this. We hope to finally have some answers so that she can continue to grow and make great strides in all areas.

New specs :)

As promised... here is my beautiful Sophia in her new glasses! Poor babe is NOT a fan yet, but this is only day 1. Her eye doctor said that he suspects that soon enough she will not mess with them because she'll realize how much better she can see with them.

Success! She is already an expert at getting them off!

So studious :)

It's a whole new world through these eyes!

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.

Vacation at the Lake

Vacation to Lake Okoboji ~ 2011

We enjoyed another trip to Lake Okoboji with my family the last week in June. Beautiful views, great company, good food and surrounded by those you love... doesn't get much better than that!

Elle and me on our beach :)

Cousins! They had so much fun together!!

Elle learned how to kayak (notice Grandma about ready to get whacked by the oar)!

Sophia enjoyed her time on the pontoon... as soon as I took off her life jacket that was swallowing her. I was one nervous mom!

I was so proud of Isabelle who was so brave and got right in the lake with Uncle Jeremy!

Driving the boat with Daddy :)

We had so much fun on the boat... sightseeing, relaxing, swimming, and topping it off with a yummy treat from the official Nutty bar stand!

Isabelle and I had fun on the bumper cars!

Isabelle and Jason playing Uno Attack for the fiftieth time. She loves the game and was quite proud when she beat Daddy!

Sophia snuggling with cousin Jayda :)

I love this picture! I snapped it while we were taking a walk one morning with the kiddos.

Ready to ride the roller coaster... this would be the only smile captured as she was quickly in tears. The ride ended with Isabelle remarking, "I liked the ups but not the downs." What a wonderful metaphor for life! I love it!

Relaxing in the tube with her cousin Alexis... they are tied to the dock and thought it was the best thing ever!

Peek-a-boo!

Sophia liked chilling in her little swing down by the lake :)

The kids loved playing on the beach. They did it for hours and hours and hours!

Grandma and Sophia relaxing in the hammock!

Isabelle playing on the beach just moments after arriving :)

Me and my beautiful babies! We loved hanging out on the dock!!

Summer Recap

Sophia definitely is our little diva in training! As you may have guessed, her trainer is her big sister...

4th of July ~ We watched the fireworks with our neighbors and Isabelle was absolutely thrilled when Nate let her use his earphones as she was terrified of the noise this year!?! She and Emma watched from the "castle".

Sophia and Daddy at the 4th of July parade in Waukee. She was very interested in all of the people.

Isabelle and Jayda patiently (or not so patiently) waiting for the parade to begin.

My lil' laundry helper :)

Balloon Classic in Indianola ~ Isabelle looks forward to this every year!

Isabelle loves helping out in the kitchen. Here she was making some delicious fruit salad for our dinner.

Soph enjoyed the balloons this year too despite the heat!

Pistachio icecream... yes, she picked it and loved it! It's green and that's all that matters in the world of Belles!

Creek stompin' at Grandma and Grandpa Karwal's house... she had so much fun with her cousin Collin and Aunt Kristi! Me? I chose to stay dry on the banks taking photos ;)

Sophia LOVES the water! Weather a swimming pool or a bath, she takes every opportunity to splash. She could care less if it gets in her face. She gets so excited!

Stopping for a quick photo opp at the sculpture park in downtown Des Moines. This one is Isabelle's favorite... she's named it the ABC one.

We took the girls to the Iowa State Fair (I always drag Jason there at least once)! Sophia enjoyed all of the sights as she cruised in her stroller. Isabelle was excited to participate in all the fun. And of course we enjoyed some healthy treats... at the top of our list: dairy barn strawberry icecream, cheese curds, and mini doughnuts!

Such a silly girl :)

I love every chance I get to snuggle with both of my girls!

Enjoying a picnic at the park on a beautiful summer day!

Belles loves her dresses... especially when she can twirl in them :)

Already the best of friends. They are so loving with each other... it makes my heart melt!

We had fun at Blank Park Zoo with our neighbors. Isabelle is standing with her buds Emma and Jackson at the dinosaur exhibit.