Our Sassy Little Warrior
Sophia is waiting to have x-rays done of her hip, spine, and legs at a recent appointment with her physiatrist, Dr. Ramsey.
As I sit down to write this update, I feel an overwhelming sense of gratitude. I have so much GOOD to share about our little Sophie. It's hard to believe that it has been almost a year since we learned that she would face some unexpected challenges in life. She has continued to make gains overall in her development and we are so proud of her for every achievement... no matter how seemingly small it may be. She is a spitfire and we are having so much fun simply loving our little girl!
Sophia continues to have weekly physical therapy, occupational therapy, feeding therapy, and speech therapy through both Blank and Early Access. She also continues to receive nutrition services through Early Access/The University of Iowa Clinics. While her therapy schedule and feeding often seems to dictate how our days unfold, we do our best to live as we would otherwise... enjoying the ordinary, everyday moments in life with our two beautiful girls. Again and again, I feel so blessed to be able to be home with our girls during their early years. Life is good!
Sophia has had several doctor appointments recently. In late May, she saw her gastroenterologist doctor a little earlier than planned because she was having an increase in vomiting again-- which brings on a host of other issues with eating. The simple (or not so simple) answer is that she continues to struggle in this area due to the neurological component. He strongly believes that our best plan is ongoing therapy for feeding. Along with her medication for reflux, therapy is what will provide the greatest outcome for her. Dr. Manini was very pleased with her weight and overall appearance. She looks healthy! He still has concerns about her fluid intake as it is still far below what she should be taking, but for now a g-tube is no longer being considered. :) We have a plan in place to continue to address her fluid intake. We are currently transitioning her from a specialized toddler formula back to Pediasure if her body will tolerate it as it contains milk protein. So far, it seems to be going well, but she is still getting it in very small doses. Our hope is that she has outgrown the allergy to milk protein. She continues to work towards using an open cup, but is still mostly syringe fed her fluids. While she can hold and attempt to drink from a sippy cup with her left hand, she does not have the oral motor skills to do so successfully... not for lack of trying!!
In early June, she was seen by Dr. Stoll, her pediatrician for a wellness check. As I mentioned in an earlier post, we are very sad that Dr. Stoll will no longer be our girls' provider. Both girls will be seen by Dr. Jennifer Groos at Blank Pediatrics starting in July. We have heard wonderful things about her and she has come highly recommended by Dr. Stoll and many of Sophia's other providers. Her appointment went very well and Sophie has shown great growth overall!! I am elated to share that she now weighs 20 lbs. 8 oz. which puts her at the 21st percentile... yes, I said 21st!!! :) She is 32 1/2 inches which puts her at the 71st percentile for heighth!! When the nutritionist measures her weight for length, she's still under the 5th percentile, but we prefer to go with the 21st percentile instead! ;) Yay Sophia!
We have had some concerns about whether or not Sophia is able to regulate her body temperature. These concerns developed in early spring with the warm weather. We noticed that she does not appear to sweat and becomes easily flushed and somewhat lethargic... all indicators that she may not be cooling herself properly. We have addressed this by keeping her out of extreme heat, limiting the amount of time she spends in warmer temps, using a handheld fan (which she loves), cooling her with water, and trying desperately to get her to take more fluids. Dr. Stoll wanted to run a test on her thyroid to make sure that wasn't the cause. Those results came back normal... which we are obviously thankful for. She explained that this issue is possibly due to affected neuro pathways and we planned to discuss this further with Sophia's physiatrist at an upcoming appointment.
Last week, when we saw Sophia's physiatrist, Dr. Ramsey, the regulation of body temperature was further discussed. He agrees that with the thyroid test results indicating normal functioning, that it could be the affected neuro pathways causing this issue. So, basically, we continue doing what we've been doing to keep her cool and we hope that this may be something that could improve in the future. Dr. Ramsey was also pleased with Sophie's progress in therapies and her acquired skills. She had x-rays taken of her spine, hip and leg to look at their alignment and for any indicators of irregular growth which can be common in patients with hemiplegia. We are still waiting to hear about those results. Finally, we discussed the possibility of casting her dominant arm in the future. This is something her OT at Blank has been discussing and Dr. Ramsey thinks she will eventually be a good candidate for. This is something we would not consider until she is crawling and/or standing more independently as we would not want to interfere with that progress and her need for both arms for balance. Casting is fairly controversial, but there is a lot of research supporting it's use. My thoughts on casting... still undecided. I think I may need some more convincing that this is what would be best for her...
For those of you who like a little more detail, please read on!
As for therapy, Sophia continues to show progress. More specifically, she is gaining strength in her right shoulder, arm, and hand and makes many more attempts to "use righty" as we often phrase it for her. She is able to stand with her braces for longer periods of time (either in her stander, walker, or against furniture). A grand milestone was met when she learned how to get into sitting independently from a lying down position right at 18 months... and she has now mastered it on all surfaces... even the slippery hardwood floors. She is loving the freedom this allows her... especially at bedtime! :) She continues to use approximately 10-15 functional signs to communicate as she has no spoken words yet. Her receptive language (understanding) continues to amaze us! We have no doubts that she understands all that is going on around her and not a day goes by that I am not overwhelmed with gratitude for this prayer that has been answered.
Some fine and gross motor skills that she continues to work towards include: grasping objects with her right hand and being able to hold onto and purposefully release an object; standing independently for a few seconds at a time; taking steps while assisted (either in her walker or with me holding her hands); maintaining a hands and knees position independently; crawling; getting into kneeling and standing from sitting. For language/communication, she is working on using her signs spontaneously-- without us prompting her to use a sign (i.e.- "do you need help?"); imitating sounds (she currently has /m/, /b/, /d/, /o/); imitating gestures; using PECS (Picture Exchange Communication System) for communicating some things such as "all done".
As I mentioned above, feeding is one area that Sophie has continued to really struggle with. Although there has been progress made with eating too, it has been very slow and it seems to continually be one step forward, two steps back. From what Sophia does communicate to us, it is probably the most difficult struggle for Sophia and if I am honest, I would not hesitate to say that it is the most frustrating for me... and Jason and Isabelle too. She is still only able to tolerate pureed foods so I continue to make all of her food... not that I mind this. She has obvious sensory issues when eating and struggles with textures and food temperature. She is able to eat a few "finger foods" that she is able to swallow whole or that dissolve easily such as cut up mandarin oranges or broken up crackers. She loves to be able to feed herself which is very age appropriate! She continues to have episodes of vomiting and this leads to an increase in gagging, choking, and an overall avoidance in wanting to eat or drink (not that I can blame her at all). I do believe that progress will continue to be made... we have one of the best OTs on board with us and no one is giving up! She'll get there!!
Sophia has had several doctor appointments recently. In late May, she saw her gastroenterologist doctor a little earlier than planned because she was having an increase in vomiting again-- which brings on a host of other issues with eating. The simple (or not so simple) answer is that she continues to struggle in this area due to the neurological component. He strongly believes that our best plan is ongoing therapy for feeding. Along with her medication for reflux, therapy is what will provide the greatest outcome for her. Dr. Manini was very pleased with her weight and overall appearance. She looks healthy! He still has concerns about her fluid intake as it is still far below what she should be taking, but for now a g-tube is no longer being considered. :) We have a plan in place to continue to address her fluid intake. We are currently transitioning her from a specialized toddler formula back to Pediasure if her body will tolerate it as it contains milk protein. So far, it seems to be going well, but she is still getting it in very small doses. Our hope is that she has outgrown the allergy to milk protein. She continues to work towards using an open cup, but is still mostly syringe fed her fluids. While she can hold and attempt to drink from a sippy cup with her left hand, she does not have the oral motor skills to do so successfully... not for lack of trying!!
In early June, she was seen by Dr. Stoll, her pediatrician for a wellness check. As I mentioned in an earlier post, we are very sad that Dr. Stoll will no longer be our girls' provider. Both girls will be seen by Dr. Jennifer Groos at Blank Pediatrics starting in July. We have heard wonderful things about her and she has come highly recommended by Dr. Stoll and many of Sophia's other providers. Her appointment went very well and Sophie has shown great growth overall!! I am elated to share that she now weighs 20 lbs. 8 oz. which puts her at the 21st percentile... yes, I said 21st!!! :) She is 32 1/2 inches which puts her at the 71st percentile for heighth!! When the nutritionist measures her weight for length, she's still under the 5th percentile, but we prefer to go with the 21st percentile instead! ;) Yay Sophia!
We have had some concerns about whether or not Sophia is able to regulate her body temperature. These concerns developed in early spring with the warm weather. We noticed that she does not appear to sweat and becomes easily flushed and somewhat lethargic... all indicators that she may not be cooling herself properly. We have addressed this by keeping her out of extreme heat, limiting the amount of time she spends in warmer temps, using a handheld fan (which she loves), cooling her with water, and trying desperately to get her to take more fluids. Dr. Stoll wanted to run a test on her thyroid to make sure that wasn't the cause. Those results came back normal... which we are obviously thankful for. She explained that this issue is possibly due to affected neuro pathways and we planned to discuss this further with Sophia's physiatrist at an upcoming appointment.
Last week, when we saw Sophia's physiatrist, Dr. Ramsey, the regulation of body temperature was further discussed. He agrees that with the thyroid test results indicating normal functioning, that it could be the affected neuro pathways causing this issue. So, basically, we continue doing what we've been doing to keep her cool and we hope that this may be something that could improve in the future. Dr. Ramsey was also pleased with Sophie's progress in therapies and her acquired skills. She had x-rays taken of her spine, hip and leg to look at their alignment and for any indicators of irregular growth which can be common in patients with hemiplegia. We are still waiting to hear about those results. Finally, we discussed the possibility of casting her dominant arm in the future. This is something her OT at Blank has been discussing and Dr. Ramsey thinks she will eventually be a good candidate for. This is something we would not consider until she is crawling and/or standing more independently as we would not want to interfere with that progress and her need for both arms for balance. Casting is fairly controversial, but there is a lot of research supporting it's use. My thoughts on casting... still undecided. I think I may need some more convincing that this is what would be best for her...
For those of you who like a little more detail, please read on!
As for therapy, Sophia continues to show progress. More specifically, she is gaining strength in her right shoulder, arm, and hand and makes many more attempts to "use righty" as we often phrase it for her. She is able to stand with her braces for longer periods of time (either in her stander, walker, or against furniture). A grand milestone was met when she learned how to get into sitting independently from a lying down position right at 18 months... and she has now mastered it on all surfaces... even the slippery hardwood floors. She is loving the freedom this allows her... especially at bedtime! :) She continues to use approximately 10-15 functional signs to communicate as she has no spoken words yet. Her receptive language (understanding) continues to amaze us! We have no doubts that she understands all that is going on around her and not a day goes by that I am not overwhelmed with gratitude for this prayer that has been answered.
Some fine and gross motor skills that she continues to work towards include: grasping objects with her right hand and being able to hold onto and purposefully release an object; standing independently for a few seconds at a time; taking steps while assisted (either in her walker or with me holding her hands); maintaining a hands and knees position independently; crawling; getting into kneeling and standing from sitting. For language/communication, she is working on using her signs spontaneously-- without us prompting her to use a sign (i.e.- "do you need help?"); imitating sounds (she currently has /m/, /b/, /d/, /o/); imitating gestures; using PECS (Picture Exchange Communication System) for communicating some things such as "all done".
As I mentioned above, feeding is one area that Sophie has continued to really struggle with. Although there has been progress made with eating too, it has been very slow and it seems to continually be one step forward, two steps back. From what Sophia does communicate to us, it is probably the most difficult struggle for Sophia and if I am honest, I would not hesitate to say that it is the most frustrating for me... and Jason and Isabelle too. She is still only able to tolerate pureed foods so I continue to make all of her food... not that I mind this. She has obvious sensory issues when eating and struggles with textures and food temperature. She is able to eat a few "finger foods" that she is able to swallow whole or that dissolve easily such as cut up mandarin oranges or broken up crackers. She loves to be able to feed herself which is very age appropriate! She continues to have episodes of vomiting and this leads to an increase in gagging, choking, and an overall avoidance in wanting to eat or drink (not that I can blame her at all). I do believe that progress will continue to be made... we have one of the best OTs on board with us and no one is giving up! She'll get there!!
I had to post this photo because it melts my heart! I love seeing my girls get along so well. Don't kid yourself... they do their share of fighting, but I love when I capture moments like these! :)
And those who know me well know that I did not actually let Isabelle drive with Sophie in the car. While Isabelle might consider herself NASCAR ready, she is still a bit of an amateur. Sophie is not able to maintain her balance well enough for such a ride, but she was quite happy to sit in the big girl Jeep!
Best regards to each and every one of you and our deepest appreciation for being a part of our journey.
