Update Part 1: "Well, you earn the award of The Most Unique Patient of the Day!" These were the words uttered by my doctor last week, and it wasn't the first time I have heard that. Unfortunately, the same message has been repeated several times over the past 8 years, and is common for many zebras to hear over and over again. I heard a similar message on November 22nd, the day before Thanksgiving, at our follow-up appointment with the sleep specialist for our 5-year-old daughter. She completed a sleep study a few weeks ago and we were meeting to go over the results and treatment plan. Unfortunately, A's sleep issues have not improved since her turbinate reduction surgery in September. She is still just as tired throughout the day, falling asleep at all times of the day, and is unable to function properly without a daytime nap. So I approached this appointment knowing that something had to be done to help her and was expecting the recommendation for a CPAP machine. However, the results of the sleep study showed that her obstructive sleep apnea had improved a bit and was now only considered "mild." However, she had an increase in the frequency of periodic and isolated limb movements, which can cause her to be aroused out of REM sleep each time. Despite that disorder worsening, the sleep doctor did not feel that the mild sleep apnea and limb movement disorders were bad enough for her to recommend the CPAP machine or that they fully explained the severity of her hypersomnia. This is what led her to say that A's health struggles are tricky, unique and a bit puzzling. After asking me many questions, going over her medical chart and previous tests again and again, she believes that A is becoming so fatigued from a combination of a possible neurological condition, the mental overload she experiences during a full-day of kindergarten, and her low muscle tone paired with all the physical activity at school. (Individuals on the autism spectrum and who have anxiety, like A, often become very overwhelmed in school environments, which can be very exhausting mentally.) The doctor is hoping the genetic testing we are waiting for will shed some light on the situation and provide some more answers. For now, the doctor's recommendations are to get a second opinion from another sleep specialist at the local children's hospital since A's case is so complex, repeat the sleep study in 6-9 months, have a full neuropsychological evaluation to determine her neurocognitive functions and to help with school accommodations, repeat her blood work to check levels that could be affecting the period limb movements (last time the blood work was all normal), and to consider other ways to incorporate power naps at school, or to reduce her school work load and school hours to half-days. I passed this information on to her school team, and luckily, we meet on Thursday to discuss her current re-evaluation of her IEP (individualized education plan). So together we will come up with a plan that best meets her health and educational needs. Needless to say, this potential schedule change will cause a bit of a shake up in our family. So I'm scrambling to figure out how to make all these changes and quick! I'll be sure to keep everyone updated, of course! Update Part 2: On November 24th, the day after Thanksgiving, our 8-year-old daughter, E, and I had to report to the hospital to complete autonomic testing and be evaluated by the same autonomic neurologist that I see regularly. We were so fortunate to get an appointment in just 3 weeks from calling for these tests. Most patients wait 6-8 months to see him. Thankfully, he knew a lot about E already and had said he recommended testing her to see if her bladder and GI issues were due to autonomic dysfunction and could possibly explain why her incontinence issues have not improved after her tethered spinal cord release surgeries. So when I contacted him about her recent struggles in PE class at school, he thought it warranted a quick evaluation. See, E has been struggling most Thursdays during PE class when they often run longer distances. She has symptoms afterwards each day that include headaches, dizziness, chest pains, and sometimes her pulse ox reading is too low. Each Thursday this year, she ends up in the nurse's office and I get a phone call with an update. Several weeks ago, she started sitting out at PE time when the class was required to run, which she is allowed to do with her current health issues and 504 plan at school, and it gave us the time to schedule the necessary doctor appointments to investigate what was going on. So on the day of testing, E underwent 4 autonomic tests, including sweat testing using a capsule applied to the skin, a measurement of heart rate after deep breathing while lying down on her back, a measurement of heart rate and blood pressure after taking deep breaths in and blowing into a mouthpiece, and finally a tilt table test. The autonomic neurologist also took a medical history, list of symptoms, reviewed her medical records and previous testing, and performed a physical examination. His preliminary findings were that her sweat testing is abnormal and she has exercise intolerance, which means that her autonomic nervous system is not regulating itself as it should when she is exerting herself physically. For now, the doctor wrote a letter to her school stating her diagnosis and that her PE class needs to be adapted or modified to accommodate for her health needs. He will also be reviewing all her medical records in more detail over the next couple days, further analyzing the tests, and will write me with more complete recommendations.
E did a fantastic job at the testing and appointment and received many compliments about what a good patient she is. I could not be more proud of my brave girl! She definitely deserved a little fun after all that. So we headed to the theater to see the movie, Wonder. We were both anxiously awaiting the release of this movie after reading the book together earlier this year. It was such a touching movie (and book), and I really related to it on many levels, which left me tearing up throughout the movie. The message that sticks with me is the quote from J.M. Barrie that is referenced in Wonder...
However, today in this rare moment of quiet, I am able to think about all the things I am thankful for, and I think I need to do this more often. I want to consciously remind myself of all the ways we are blessed as a family, and I want to do this every month, not just in November. So here goes...
1. I am thankful for my husband, who stands by me and our daughters through all the ups and downs. I know he loves us all, and I am so, so grateful for him every day! 2. I am thankful for my three amazing daughters. They have taught me so much about love, patience, determination, and courage. Words will never express how much they mean to me! 3. I am thankful for my sisters, parents, aunts, uncles, cousins, and grandparents. They have all taught me so much during my life and many have been my rock and support system through all our challenges, tests, procedures and surgeries. I couldn't do it without them and love them so much. 4. I am thankful for the friends, that are like family, and have also been a tremendous support to me and my family. Ladies, I love you too! 5. I am thankful for the friends that I've met in online support groups. While some people don't see the value of Facebook, I do. It allows families, who have similar medical struggles and diagnoses, from all over the world to communicate and support each other. There is one special friend who has three children are similar to mine that I am very thankful for. I would be lost without her support! 6. I am thankful for each new day, that I have learned to keep advocating for my girls and never give up, for the medical team that we currently have that is fighting for my girls as hard as I am, and for all the progress we have made so far. 7. On that note, I am also thankful for the nurse practitioner who nominated our girls for Make A Wish Foundation. I received a voicemail message from Make A Wish Foundation yesterday. Fingers crossed that it's good news! I could go on and on, and I will. I plan to jot down reasons to be thankful each month. Despite the challenges, I know we have many blessings! Hopefully this Thanksgiving you are reminded of all the reasons you are thankful. Wishing you all a happy and blessed Thanksgiving! Thanks for reading! |
AuthorHi, I'm Rebekah! I'm a wife, architect, teacher and mother to 3 amazing daughters! Thanks for stopping by my blog, RAISING ZEBRAS! Archives
February 2018
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