I have more medical updates. Lauren has been unfortunately having continued abdominal pain. She had a gastric emptying study last week. It took a total of 5 hours (plus an extra hour because we did bloodwork while we were at the hospital). She was such a champ! We brought lots of fun stuff to keep us occupied since it was mostly waiting around. We played Yahtzee 3 times, read 12 books, she watched shows on YouTube, she played games on her tablet. It was a long day.  Her results came back borderline delayed gastric emptying. Normal is below 10% at the 4 hour mark. She was at 13%. Sin ..read more

 The sleep apnea saga continues... Lauren is not tolerating the CPAP well at all. She seems to be able to get started and will even fall asleep with it on. But after about 30 minutes she wakes up, realizes it's on, and seems to panic and needs it off immediately. The longest we've ever gone was about an hour and a half and it happened one time. Usually we're making it about 25-40 minutes. It's frustrating, but I know it's not something we can force and she really is trying. She saw ENT yesterday. I planned to bring up the Inspire procedure (hypoglossal nerve stimulator) and the doctor bro ..read more

 Christmas has come and gone and Santa was good to all of us! Ryan got Legos, action figures, Oculus, money, a Nerf gun, a laser tag set...all great stuff. Lauren got books, a new game called Picky Kitty that she loves, a food truck, a Gabby's Dollhouse, a baby doll, a Polly Pocket, some My Little Pony toys, etc. Both kids really seemed to enjoy the holiday and we were so thankful to be able to safely gather with family.  Both kids are vaccinated. It went totally fine for Ryan. He said after his second dose the next day he had chills really bad but he had a math test at school, so he ..read more

 Well, 20 months after this pandemic started, COVID has hit our house. Lauren has been sick since early November, but I first thought it was due to her CPAP sleep study. Then she got vaccinated. Then she tested negative 11/5 (She had a fever, which I expected from the vaccine but felt testing was prudent because she was coughing). Her cough never really went way. Tuesday I got a call to pick her up from school and her belly was hurting and it seemed like her cough had picked up a little more. So she and I both tested "just to be safe". She was positive! I was negative. I'm planning to tes ..read more

 Lauren had a sleep study August 12th that showed severe obstructive sleep apnea with sleep related hypoventilation and retained carbon dioxide. She's already had 2 surgeries for her sleep apnea, so obviously this is stressful!  We saw sleep medicine today. Dr. Patel discussed how patients with trisomy 21 (aka Down syndrome) are more likely to have sleep apnea, and especially refractory sleep apnea (meaning it persists after treatment interventions). She recommended seeing ENT (already scheduled next week) to discuss a sleep endoscopy and possible surgical options. We do NOT want ano ..read more

Ryan. He is just AMAZING lately. I am so proud of him. I am so happy for him. He seems so much more comfortable in his own skin. -He's eating chicken nuggets and fries that I make at home (dinosaur shape preferred, LOL) -He tried (and liked) Chic-Fil-A -He ordered his own ice cream this week when we went after an evening hike at Kensington. -He's been willingly leaving the house to go places and has even gone on a couple random bike rides of his own volition. He's gone grocery shopping with me a couple times! While some of this might be attributed to him getting to pick a snack or candy while ..read more

 This is hard. Harder than I thought it would be almost 10 years post-diagnosis. You know how everyone jokes that toddlers are so hard and irrational and thank God it doesn't last forever? Yeah, we're still there cognitively and Lauren is 9.5 years old. It is just plain hard. Believe me, there are moments sprinkled in, as with all toddlers, where I just can't believe I get to parent such an adorable and sweet child. It's her natural defense mechanism. But oh my gosh, this doesn't end! It's a constant internal battle of letting her do things for herself and encouraging her to do things for ..read more

 I officially mailed off Lauren's Medicaid application packet today! We've already met our deductible for her this year, but still have copays and coinsurance, and she starts physical therapy later this month so I'm super hopeful we'll have her Medicaid in place shortly. Once that's actually in place, we can work towards the finding and hiring of staff (respite and community living supports) to give us some much needed breaks and help. I've said before, I sometimes forget how not typical Lauren is until I spend time with a typical 9 year old. She cannot multitask. If left unsupervised for ..read more

 Today has been a unicorn day and I'm writing this post to remind myself that days like this DO exist, especially when we have a hard day. I picked Lauren up for a dentist appointment, which she was less than thrilled (and even less cooperative) for. I picked her up from school before lunch, so we got McDonalds as a treat on our way home (no cavities!). Then she played in her backyard blow up pool. Then we went for a bike ride around the block and she rode almost the entire time by herself! Then we played with sidewalk chalk together. We played rock paper scissors. She went to bed with a ..read more

 The countdown is on. 17 days until the last day of school for the year! I'm both excited and terrified. This is my first summer not working full time since I became a mom. I'm buying a summer pass to our local community pool (this is lofty, unsure if this will be safe or realistic to do by myself with Lauren during the week but I'm willing to try). I've almost abandoned all pretense of bedtime and I don't care what they eat for lunch at school anymore, LOL. Hockey started! I joined an instructional league with my twin sister and last week was the first week. It was so much fun, I'm so gl ..read more