Alex has been struggling with constipation and weight gain again :( We've had to stop his Miralax wean and bring him back up to 3 teaspoons a day. He went to the doctor today to make sure he wasn't sick and he was fine. We're increasing calories and making sure to feed him every 2 hours (like he's a newborn again, I know!) I am waiting for him to take his first steps any day now.
I remembered a quote I memorized years ago. "Ships are safe in the harbor...but that's not what ships are made for." We started a library class on weds mornings with other one year olds... So this means I got to see what Alex in the 5% really looks like. There were some BIG kids in this class...I wondered who was checking IDs at the door. He was only one of 2 non-walkers but he tried to pull up on many children to get in on the action. The half hour class consisted of puppets and rattles and scarves to play with. We can't wait to go next week. (As a side note we used A LOT of hand sanitizer and I made sure the kids around us were not feeling the least bit sick) Alex just enjoyed being with "small people". I will start to bring Lauren come spring.
When Alex first came home on oxygen and monitors I was very aware of having "different children". It made me angry for people to stare. Now I know these kids inside and out and I could care less about what others thought or stared at. Once spring arrives The nurse and I will take BOTH kids to library class! Lauren will love the music and the different atmosphere I can't keep them locked away forever.
Lauren went to equipment clinic last week where they fit her for a tumbleform chair (therapy chair...very expensive!), a bath seat (to fulfil my fantasy of her playing in the bathtub!) and some positioners...these will arrive in a few short MONTHS...yes about 4 Months! Urgh! But we're lucky to get anything at all! We've also have been waiting for Lauren's new trachs to come in. SHe has a very custom length on her trach to keep the collapse to a minimum... in the past 2 months we've been sent 4 WRONG size trachs (these cost about $1,000 each) I thought her shipment was going to come last week but again they made 3 wrong sized trachs but this time they caught the mistake before actually shipping them. Lauren is also now officially changed over to "big girl" food. (ie Neutrin Jr. ) and she's doing great with her change AND her increase in extra water. Just to give you some idea...Lauren takes in 500 calories a day...Alex takes in 1,000 and we need to INCREASE that! I look forward to her swallow study next week!
The pic posted was because Alex always wants to get to "nurse Mary's" glasses so we finally put them on him...How funny! The other picture is just my own personal advertisement for "breathable bumpers"
He is totally rocking those glasses!!
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