Little glimpses into our world... We've been so blessed with our two beautiful, loving girls and we hope you will enjoy watching them grow as much as we do!
Wednesday, December 14, 2011
Happy 4th Birthday Isabelle!
Sophia Update ~ December 14, 2011
We were told that the pediatric radiologist would have her report completed by that evening and that we should hear from our doctors the following day with the initial read. This was much sooner than we had anticipated and we were obviously anxious, but terrified at the thought of what this MRI could determine for our little girl. The call from our pediatrician came Friday morning while one of Sophia's home therapists was here. Too nervous to answer my cell I intentionally missed the call, but then they immediately called the house phone. I knew I needed to answer and Heidi, Soph's OT, encouraged me to do so. I think I literally held my breath once I said hello. She cut right to the chase and said that Sophia's MRI came back with NO CHANGE! This is what we have been praying for! So, while there were tears, they were tears of joy. We then heard from Sophia's neurologist at Blank on Monday confirming the results of the scan. She said that this indicates that the injury appears static-- meaning no change which leads us to even greater hope that her condition is not progressive. The MRI was also sent to the neurologist at Mayo and to Dr. Ramsey, her physiatrist. We actually meet with Dr. Ramsey next week so we will be anxious to visit with him and get his opinions as well.
Once again, we thank you for all of the prayers said on Sophia's behalf. God is good ... prayers have been answered!
Other news:
Sophia continues to do well in her therapies. She was recently cast for SMOs (ankle braces) for standing support. We should get those in the next few weeks. Sophia will be getting her first walker in January. Because she is still not crawling, we want to give her a venue for mobility. Mobility at this age is crucial for continued cognitive development. This smarty pants continues to impress us daily with what she has learned and all that she does! We are SO very proud of her!
Thursday, December 8, 2011
Sophia Update ~ December 7, 2011
We were very excited that, after taking all dairy away, Sophia did not vomit for two full weeks. Unfortunately, we seem to be back to the way of old. She has been sick everyday for almost a week again now. Along with that, she is eating less again and her fluid intake has dropped. We had a follow up with the GI doctor yesterday and unfortunately, his prognosis remains the same... while she does have reflux, her condition is one that has a neurological base. So, while we can continue to try different things, it is likely going to be an ongoing issue. Diet does not seem to be playing a role, other than the milk protein sensitivity (and the doctors are not really even convinced of that). She continues to work through feeding and sensory issues at home and with a therapist and she will continue to be on her medication for the reflux. In addition, we are trying another medical grade toddler formula and we have started a prescribed supplement called Benecalorie which mixes in her food to give her extra calories. Finally, once we try this new formula for 2 weeks, if nothing has changed, we may try a new medication which is actually an antihistamine. Research in pediatrics has shown that as a side effect, this medications increases appetite and helps regulate the stomach. While we hate the idea of her being on so many supplements and medications, we want to do all we can to help her. She continues to grow... at least in length! At her 12 month wellness check last Friday, she was at the 50th percentile for height! Unfortunately, at 16 lbs. 8 oz. she has dropped to the 1st percentile for weight. We continue to pray that she will be able to eat well and ENJOY it!
Finally, Sophia is scheduled to have her second MRI today. We are nervous but hopeful. Faith can carry you a long way. We appreciate prayers for her today as she goes through the procedure and for the outcome as they compare the two MRIs, which we will likely not know until next week. She will be put under today which is always a scary risk with a little one. I know she'll be our warrior once again though!
Happy 1st Birthday Sophia!
Thursday, November 24, 2011
Happy Thanksgiving!
Jason and I are also extremely thankful for what seems to be a significant turn-around for Sophia. A week ago today, Jason and I were feeling very down as Sophia's eating, fluid intake and vomiting seemed only to be getting worse. We poured over the logs we've kept and the only possibility we could see is that maybe she still had a sensitivity to milk protein. Even though we had been told by many of the specialists we work with that she likely had outgrown this, we were grasping at anything to help our baby feel better. I contacted Sophia's pediatrician and GI doc to tell them our concerns and what we thought we should do as a next step. Both doctors agreed that this was a legitimate next step and Dr. Manini (GI) switched her from Pediasure to a product called Pediasure Peptide that does not contain milk protein and is mostly broken down already... similar to her Alimentum formula. As of last Friday, we cut out all dairy and switched her to the Peptide. She continues to take her medication for reflux. In the last week, she has only vomited once, she has taken 2 full bottles a day and her demeanor overall when eating has been happier, and much more willing. We are thrilled with this improvement and are so grateful that we have perhaps figured out one piece of the puzzle. She is at least getting calories closer to what she needs and keeping them in! She still is not taking in the level of fluids that doctors want her to but it is much, much improved! We have great hope for this as well!
Monday, November 7, 2011
Sophia Update ~ November 7, 2011
We heard from Dr. Manini today and received the results from the endoscopy and ph study that were done while Sophia was in the hospital last week. The tests revealed a lot and he feels certain at this time that we now know what is happening with our little peanut. The biopsies from the endoscopy showed that the tissue in her esophagus and small bowel looked healthy and was without inflammation. :) This also revealed that she does NOT have EE (the disease of the esophagus that was mentioned in earlier posts). :) There was some minor irritation seen in her stomach, but he was not concerned about this. He also does not believe that there is any indication of severe allergies that would be causing the vomiting. Sophia's score on the ph study was a "23". A normal score for children of her age and weight is score a 12 or less. So, while she is definitely experiencing reflux, Dr. Manini explained that they are not typical episodes of reflux. I'll save you all the confusing details and give you our final understanding...
She has been prescribed reflux medication in hopes of reducing the vomiting, however, he believes the vomiting is the result of the gagging and coughing she does while eating which ultimately stems from a neurological response. Children with neurological conditions, such as cerebral palsy, can have sensory issues (i.e. difficulty with textures, etc.). He believes this to be the case with Sophia. The reflux she is experiencing does not justify the surgery that had been discussed (fundoplication). We are very thankful for this. The issue of fluid intake is still of great concern and he wants to further discuss the possibility of a g-tube when he sees Sophia again in 4 weeks. From now until that time, we are trying everything in our power to get her to take in more fluids. We continue to syringe feed her several oz a day, however, we are also working diligently on teaching her to drink from an open cup as this was a suggestion from several of the professionals we are working with. It was also suggested that we begin transitioning her to Pediasure and so we have slowly begun introducing that. The goal is to have her off of Alimentum and completely on Pediasure in the next month. We pray that she is over her milk protein allergy and so far, all is looking good. If she does still have the protein allergy, there are other formulas that will need to be considered.
We continue to pray that our independent (and stubborn) little miss will help us turn things around and that she will start taking in more fluids... more willingly would be a nice benefit too! ;) Thanks to each of you for your continued prayers.
Saturday, November 5, 2011
Sophia Update ~ November 5, 2011
Thursday, November 3 ~ Early Thursday morning, Sophia was admitted to Blank for an endoscopy and PH probe study. Once again, she was a trooper. Even though she had not eaten since 11pm the night before and was woken up early, she still managed to be her smiling, charming self. The photo above was taken before she went in for the endoscopy in which she had to be put under anesthesia. During the endoscopy, the doctor examined the tissue in her esophagus, stomach, and small bowel. He also took biopsies from each of these areas so that any inflamation or damage to the tissue could be discovered and studied. Along with the anesthesia, she had to have an IV, and they then put the nasogastric (ng) tube in for the PH study. The PH study basically measures the number of times that acid comes up into the esophagus. The ng tube was in for the next 25 hours and she did great with it... much better than we had anticipated. We will not know the results from the endoscopy and the PH study until Monday. After the procedure was completed on Thursday morning, we met with Dr. Manini. Per his observations during the endoscopy, Sophia's tissue in her esophagus, stomach and small bowel all looks normal. We were so grateful for this news!! He said that this rules out the possibility of the disease EE with 80% certainty. However, he said that the biopsies will reveal much more. It likely could still be reflux or possibly food allergies. After talking with him on Monday, we will make an appointment to consult with Dr. Manini again. He and one of his colleagues (Dr. Beltroy) who also saw Sophia in the hospital, talked with us at length about the possibility of needing to intervene if her fluid intake did not increase substantially in the very near future. While we will do anything for our baby and her health, Jason and I are beside ourselves thinking that she may have to have a surgery to place a g-tube (gastrostomy) in her stomach. We actually shared a room with another little girl (19 months old) that had just had a g-tube put in. Visiting with the family and witnessing the pain that this poor little babe was going through was more than enough to have us utterly terrified. We are praying with all our might that things with Sophia will turn around and she will be able to take in enough fluids and nutrients to stay hydrated and to continue gaining weight. All of this also impacts her in therapy which has us stressed as well. To date, she has made great gains in her motor skills (small to many, but GREAT to us)! We, along with her therapists, have obvious concerns about her continuance to gain skills if she is not taking in (and keeping in) the nutrients she needs to have energy to expend. Needless to say, the next month will reveal a lot for our little Soph... we just pray that some answers will come and the right choices will be made. As always, we want the very best for her.
Below are a few more photos from her hospital stay... we hope to not be back anytime soon!
I will post again once we learn results from the tests and we meet with Dr. Manini to make a plan for our sweet baby girl. Thank you for taking the time to read about Sophia and her journey and for taking the time to care. I know that I can sometimes be a bit excessive in my writing! Finally, as always, thank you for your kindness and prayers.
Our baby is 11 months old!
I tried to get her to "pose" with her pink bear for a "comparison" pic as I have in past months since she was born. She is no longer interested in letting pink bear just sit by her. This was the best I got! Need that faster camera!!
Happy Fall
Thursday, October 27, 2011
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.
Friday, October 21, 2011
New specs :)
Tuesday, October 18, 2011
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.

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
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!
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