Well--It's December! After the last photo post, I thought I'd just end Addie's adventures on that note and call it good. However, we still experience new things with this sweetheart, so I thought I'd better document them for future reference. So month by month, we'll get to where we are now.
June: After the teething trouble of March and April, Addie's adorable teeth turned violent. During seizures, those teeth would chomp on her lip, leaving it bloody, and turning it into hamburger. How do you put a band-aid inside the mouth? Can you put Neosporin in there? Of course, neither of those basic first-aid steps would help in this situation. I asked her therapists if they'd seen other kiddos with shredded lips. They recommended that I go see the Comprehensive Care doctors at Primary Children's Hospital. We made an appointment. The docs said, "You should ask Addie's therapists." That's when we knew it was up to us to figure this out. After a quick internet search, I found posts by adults that seize and bite their tongues, leaving them much like Addie's lip. One post commented how his dentist told him to have someone push on the TMJ (temporomandibular joints) when he went into a seizure, which would drop the tongue to the mouth floor preventing injury. From that, I thought to pull Addie's cheeks into a fishy-kiss when she seized to pop her lip forward and prevent her from biting it. That worked! The lip began to heal. I also clean it every day with diluted Hypo-Redox, which not only disinfects the wound but promotes wound healing. Additionally, I made an edible herbal salve to rub on there. Her lip has a permanent cleft now, but it is no longer a bleeding, open wound. So . . . (sing it Peg & Cat) . . . ♪♪"Problem solved. We solved the problem; problem solved."♪♪July: Addie made great strides in her therapies this month, especially visually.
August: Addie weighed in at 13 pounds 13 ounces at the dietitian visit. Keeping food down and in and out of her lungs is a real challenge. She turned 2! I stopped pumping milk. Canning season got to me, and I was skipping too many pumpings to keep up my supply. Additionally, Addie needed a more calorie-dense solution. She now gets a special blend of cow milk and pureed foods. For her birthday, Addie's Vison Therapist Darci brought her camera, lights, backdrops, and props and portable set supplies to our home and did a photo shoot of Addie. These treasures are placed throughout this article. Thank you Darci!!September: Each time we attended an appointment, a doctor would ask, "Has she had a swallow study?" Finally, we arranged to do one with Addie. First, a speech-language pathologist came to our home to consult with us and to assess Addie's eligibility. We learned so much from this therapist. (This is pretty typical. We've discovered that we learn more from therapists than from any other
medical specialist. Therapists, in our view, rule the medical world in knowledge, skill, compassion, and amiability.)
This therapist first asked how many seizures Addie has a day. When we answered "40-60", she explained that they don't even do swallow tests for someone who has 2-3 seizures a day. She explained that swallowing is a complex skill that requires your brain to recognize food is in your mouth, nerves to propel the tongue to move food to the back of the throat, and muscles to work the swallow reflex and close the epiglottis over the trachea to prevent aspiration. She further taught us that the trachea is open all the time unless the swallow instinct is stimulated. If a person seizes during the study, the food plops right into the trachea and into the lungs. Therefore, swallow studies are just too risky for seizing patients.The therapist then asked, "Do you ever see tacky, sticky mucous?" I answered, "Yes--every day. Where is it coming from? Addie doesn't have a cold and yet gobs of this mucous comes out of her mouth, as she gags and chokes." With a sad look on her face, the therapist told us that Addie is aspirating her food. That mucous is from the lungs. When food goes down Addie's trachea, the cilia in the lungs produce this mucous to catch it in hopes of preventing further entrance into the lung tissue. She then sputters and coughs trying to expel the caught food. She said, "Most of these children die from aspiration pneumonia--their cilia just wear out and stop producing the mucous to catch the food."
October: Great! Minimal seizing. Addie attended some sunny fall football games as the 12th man for her brother Adam's football team. With a special Sentinel jersey just her size, she soaked in some sun and breathed in fresh air every pleasant Saturday of football season. It was bliss for about 8 weeks. When she gets into those calmer grooves, it almost seems as if she'll get better, learn to see, learn to hear, learn to crawl and maybe even walk someday. I love these days!
November: We were invited to the deaf-blind conference where parents of Utah deaf-blind children come to get support and learn. As I sat in that conference room and learned from these amazing parents, I wondered, "Is this my future?" Because Addie seems just like a little baby still, its hard to believe that she just won't outgrow her condition. When I met those families at all stages of the deaf-blind journey, it really hit home of the responsibility that lies ahead of us. We learned so much there.
Mid-month, Addie's heart rate soared to 240 bpm. She looked pale and listless with sunken eyes. Weird purplish-circle rash bumps appeared on her stomach, her leg, and her arm. She slept motionless, but her heart rate continued to spike from 220-240. I consulted with her pediatrician, and we ruled out all the dangerous stuff. Finally, I thought, "What if she's dehydrated?" I started pumping her with coconut water and electrolyte solution. We also took her out of the gloomy November weather down to sunny Mesquite, Nevada for Adam's football tournament. The calming car ride, the sunshine, and the electrolytes did the trick. Her heart rate normalized, her color returned, and she just looked better.Towards the end of the month, we started getting respite care for Addie. The nurse, seeing her oxygen saturation at 100 percent, recommended that I turn down her concentrator. I turned it down to 1 L and Addie still registered 100 percent. So--I turned it down again. All-day long, I kept turning it down, but Addie looked worse. Yes, her oximeter still said she was 100 percent saturated with oxygen. Her color looked really poor--almost blue. I couldn't understand it. What was going on? I switched her sensor, changed her sensor, unplugged and re-plugged her sensor. Then I thought to pull up the manual for the oximeter on the internet. I scoured its pages. In an obscure warning, I found the answer (and I about threw the machine through the window!) The paragraph explained that sometimes when the arterial circulation is poorly saturated with oxygen, the oximeter may still read 100 percent. The oxygen, leaking from the peripheral tissues of the foot, will be picked up by the sensor, giving a false reading. Some days I fear that my child will die because of my inadequacy! Thank goodness that manual was on the internet! Addie looked much better after I turned up her oxygen.
December: After figuring out November, Addie stabilized for a while. Then, she started fainting seizures again. We hadn't seen those since she came off her drugs in 2018. She fainted over and over and over again. When this happens, she loses all tone. If you lift her arm or leg, it drops like a floppy rag-doll. One day, she seized like this for 40 minutes--she'd wake up, then pass out. Her heart rate dropped to 70 beats per minute. On a Friday after 5 pm, there's not much help available but prayer. We just hovered over her and prayed that she'd come to. Prior to that spell, she had a night, a day, and a night of this neurological cough. She could not stop coughing, and it was very rhythmic. She'd cough, not breathing in until her oxygen levels plummeted to the 60s or 70s. Then she'd take a big gasp of air and start the cough over again. It wasn't a virus; it was her brain! We were helpless to stop it. That was the first time I shook my fist at heaven! "What's the lesson in this? How can there be any good in watching your child suffocate over and over and over? In all of eternity, what will be the point of this?" I queried. After a good cry, I repented for my lack of faith.This bunches up a lot of happenings all at once. Please realize that this year, we had more days without much seizing than we did in 2018. That is such a gift! I also have to give credit to God for all the times that "I had a thought" or "A thought popped into my mind". I know I am too weak to figure this complex child out, and I acknowledge God's hand in giving me those thoughts that rescue her from my fumbling! Our little girl is such a sweetie--just fills our home with so much love. We all adore her to smithereens! God bless this little angel forever!
