Her cancer screenings continue to come back showing she's healthy. One year of screenings down, 7 to go! We have been making conscious efforts, as a family, to improve our eating habits. Although her cancer risk is low, we would like to make it even harder for that disease to take root by eating healthy. We are doing many more fruits and vegetables (berries and kiwis are Kaylee's favorite foods... though honestly, there is very little she won't eat!). And we are looking at getting into juicing to step up our nutrient intake. Now that the weather is getting nice, it's easier to get out and be active as well. As much as she loves riding in her backpack, seeing that smile is motivation enough to get out on the nights and weekends.
We are still on oxygen at night. She hates putting the cannula in her nose... it adds an additional 30-45 minutes to our bedtime routine most nights to fight putting it on and keeping her asleep. We've tried leaving the cannula off and taping oxygen tubes to her mattress, to saturate the room air near her with oxygen. That helped a little but if she wiggle wormed too much she'd start desatting (her oxygen saturation in her blood would drop). We are finding the more apnea episodes she has, the more we are up at night. So far, the cannula is the best at preventing the desat episodes. We have another sleep study in August. Both the pulmonologist in St. Louis and the ENT in Denver thought it would be best to let her grow another 6 months and see if she grows out of her airway restriction (though we are still unsure as to what's causing it). We have seen a lot of BWS parents talking about how tongue reduction helped their child's apnea a little, but following that with tonsil and adenoid removal, completely "cured" the apnea. So we are going to start pursuing finding a ENT or pulmonologist who has worked with kids with macroglossia (large tongue) to see if we can get some answers. Our ENT we've been seeing says her tonsils and adenoids look fine... so he won't be very supportive. Many of the parents we've heard from say that they heard the same thing until they were removed, then it became obvious how interfering they really were (adenoids specifically).
Our tongue surgeon comes to Telluride a few times a year (a couple hour drive from Durango). He'll be here late this month and has offered to see us if we'd like. Although we feel like her tongue really looks good, since he's here and offered, we'll take him up on it... maybe he has some recommendations. :)
We have recently been battling constipation (on and off since January) and urinary tract infections (2 in the last 6 weeks). They are thinking the UTIs are caused by the internal pressure from the constipation, not allowing her to empty her bladder completely. But we can't figure out the constipation. It's really been since she's started eating solid food more regularly (and by eating, I mean chowing down! There are times she can almost out eat Mama, and top it off with milk when she's through... it's those BWS growth spurts!). We are questioning how much her omphalocele and hernia and their repairs contribute to her bowel function. Hopefully she'll grow out of this too. She's still on Prevacid (we want to be sure that reflux doesn't cause irritation and affect her airway) which has the potential for constipation... so maybe dropping the Prevacid will fix the constipation. We'll see.
Reflecting on Kaylee's growth and adventures of her first year is bittersweet. There were times that were extremely difficult... times I wouldn't wish upon anyone. Luckily, those are heavily outweighed by all of the awesomeness that is our little Kaylee-bug! And furthermore, this last year has really shown us the love that surrounds us! Before Kaylee, we knew we had great friends and family. But the outpouring of support from our friends and family has really shown us the meaning of friendship and love. Kaylee is so blessed to have so many wonderful people in her life. Her first birthday hasn't only been a celebration of her wonderful little life, but it's also been a time of reflection and of counting our blessings. And we certainly have a lot of blessings... the greatest being the love and support from around the world!! Thank you all for helping us through this first year! We are honored you have chosen to help us carry our load! I'm not sure how we can ever return the favor! xoxoxo