- Because of her shunts and the possibility of infections, we are going to shave her whole head. He was going to do all but about an inch from her forehead. We decided to just let it all go.
- They will be putting in at least 9 screws into her skull that will hold the electrodes. There is a good chance there will be more. He will decide when they get the MRI results that she takes next week. This will be painful and there will be minor swelling. :(
- It will take at least 6 hours in the OR. He said she will most likely be his only patient that day.
- We will go right to the Epilepsy Monitoring Unit that night to begin getting her hooked up for monitoring.
- When they locate the spots, they will see what they think will be effected by taking that section out. There is not any guarantees about it not causing damage to some kind of function for her. The sections they are watching close deal with vision and motor function.
- If they take a section out, we will be in the hospital at least 5 more days, if not longer.
- If we decide that it isn't smart to remove those sections, we look at putting in a VNS.
- The things that have him worried are that she has two shunts that are out at a risk for infection, we are opening the brain up for chances of infection, she has multiple spots that start seizures in her brain. She will be on antibiotics during her stay.
We are stressed about it but her life at the current time is stressful because she is living in constant fear. We are in constant fear and worry because her seizures are just getting worse quickly. Please pray with us that all these unknowns have the best possible outcomes and Sam can come away from all of this stronger. That she can live her life without being constantly afraid. It is going to be a long haul with a dog, and a 5 year old in a small room for weeks, but at least we had a little time to plan. Thanking God for doctors we trust, friends who pray and for what we have today, because none of us are promised tomorrow.
We will be praying constantly for your sweet baby.
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ReplyDeletePrayers are being prayed and will continue for Sammie and each of you.
ReplyDeletePraying for all of you! I pray that you will get some help!
ReplyDeleteI am praying for you all! God is good and has a plan. Love you!!!
ReplyDeleteLove you guys. Praying for peace for y'all and wisdom and strength for the surgeons. ❤️
ReplyDeleteMuch love and many prayers for Sam and for you all. Always!
ReplyDeleteThere is nothing easy when it comes to the seizure monster. Love and prayers to you, your sweet girl, and all of your family.
ReplyDeleteI know this is a controversial method, but it has been proven many times over to work. Have you considered cannabis oil? It does not get your lo "high" in any way. I encourage you to research it if you haven't already. Prayers to your lo and your family.
ReplyDeleteYou and your family are constantly in my prayers and I hope that this is the answer the end of seizures. I know we all want Sam to not be afraid and the scary spiders to go away.
ReplyDeleteThe Texas Pomponios will be praying,
ReplyDeleteGod's presence and love will be there
David and Debbie
Love this precious girl very much.She has been a blessing to all of us and God knows what He is doing with her and I will be praying that the right decision will be made for Sam,so let God be your guide.Such a sweetheart.
ReplyDeleteI hope all went well with you and your family. I am an aspiring speech language pathologist, and the journey you described in your novel really impacted me. I believe that should I end up working with young infants, I will be better equipped because of your book. It showed me to take patient perspectives into high consideration, and empathy is an important aspect of treatment. Thank you.
ReplyDeleteA Mother’s Path to Samantha’s Journey is a very informative book for a future speech-language pathologist, who wishes to work in the early intervention track. It aids in preparing me to understand the role of a speech-language pathologist in assessing and treating the characteristics of toddlers with down syndrome, such as speech, language and cognitive delays, as well as gross and fine motor movement and feeding difficulties. Samantha was diagnosed with multiple disorders, Dandy Walker malformation (DWM), Cerebral Palsy (CP), and Hydrocephaly. I would not have learned about these disorders if I had not read the book. The book helped me research these congenital malformations, and get to know that it is our job to treat the developmental delays associated with these types of down syndrome. It better prepared me to work with medically fragile infants, and what to expect in terms of family turmoil, the child’s motor, cognitive, and social difficulties, the comorbidity of other diagnoses, and the likelihood to work with an entire medical team to ensure a cohesive service coordination.
ReplyDeleteThe book impacted me emotionally. Despite the medical terminology, there is a heart-wrenching expression of a mother’s ordeal that touches the reader’s heart, and opens one’s eyes about the existence of those medically fragile infants who are unable to enjoy life to the fullest, as other children who take for granted everyday activities. It also opened my eyes to the fact that Samantha’s mother’s journey and experience could be mine. Her strong faith, determination in keeping her marriage strong, and acceptance of her daughter’s condition, impacted me deeply, and made me think this could someday be my daughter. Every single insight in the book, whether medical or life learning, will be used in my future career as a speech language pathologist.
The information in the book could be used first and foremost in helping to understand that early intervention is about assessing and treating the speech and language delays of children, like or different from Samantha, and the atypical developmental milestone associated with those medically fragile youngsters. The information in the book made me aware that there is a primary diagnosis, and other secondary diagnosis that might exist along with the preexisting primary diagnosis. Therefore, I will treat the missing milestone associated with both diagnosis. I will encounter mothers like Samantha’s mother, who might lose faith and trust in all medical personnel, including me, the future speech pathologist. So, it better prepares me attempt to give the best service I can so that I can earn their trust, by preparing a solid home based early intervention program for the parents to implement. Finally, the information in the book also helps me understand the insurance type that best covers and fits the child’s need for speech service.
Thank you so much for sharing your story to the world. As a future speech-language pathologist, this book has provided me with better understanding and insight on the impact that newly diagnosed disabilities can have on a family. You have been as inspiration to me to further strive to provide optimal services in order to improve the communicative and feeding abilities of medically fragile children. Thank you and my prayers are with your family.
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