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Just another mommy blog.
She'll pick out her outfit in the morning (a blue dress with blue pants or alternating heart patterns are some of my favorite ensembles...), insist on dressing herself and declare everything matches even if it doesn't. She barely lets me brush her hair and is in constant need of a trim thanks to a wonky cowlick in the back that grows faster than the rest of the hairs on her head. She eats more yogurt and string cheese than anyone I know and at four years old, she still does not sleep through the night. No matter how many times we tell her she's free to use the restroom at her own free will, she's up at least once a night to yell about needing to go potty or to ask important questions like if she can take swimming lessons (maybe) or go to a movie theater (sure, but GTFTS first....).
When we first received Baker's Down syndrome diagnosis, I hadn't knowingly met a single person who had experienced the same thing. I hadn't met a person with Down syndrome or knew anyone who had someone with Down syndrome in their family. Blair introduced me to the Down Syndrome Diagnosis Network (DSDN) whose mission is to connect and support families who have received a Down syndrome diagnosis. so I'm able to connect with over 300 other moms who have babies with Down syndrome that are all Baker's age.
She was concerned he was coming down with an infection or pneumonia and recommended we make pitstop at his pediatrician's office on the way home or head to urgent care. You should have gone to the Children's Hospital Me: I was just at the Children's Hospital, they told me to come here. By this time the stand-in pediatrician has decided to give Baker a breathing treatment to see if that helps his breathing and oxygen levels. but if the progress we've seen these last few weeks is any indication of Baker's future, he's going to be just fine.
While it does seem like the spasms have drastically decreased since starting the vigabatrin, I'm hesitant to say for sure they're gone. Then, Baker had a really bad day right before the 4th of July, almost 2 weeks after starting ACTH. We went to Sioux Falls for the July 4th holiday - Baker had a few rough days there and we started to wean the ACTH that Friday. The poor kid hasn't napped well in weeks and his nighttime sleep is all jacked up - no paci, only bottles; no rocking, only bouncing; wide-awake parties from 1-3 am!