So much for the new blog helping me update more! We've had a super busy week with therapy, appointments, and meetings. It also doesn't help that I officially cannot get on the computer when Keegan's awake anymore. By the time naptime or bedtime has come around, it's hard to squeeze all those "I'll wait till he's asleep" things in! I'm sure every mom out there knows that!
Keegan's had a pretty good week at therapy. He is consistently making his vowel sounds and quite a few consonant sounds at speech. He is particularly having trouble with the letter "p", but his therapist said that's a pretty hard one. No new words to speak of, but he's trying very hard these days. In occupational therapy, he's finally getting strong enough to finish an activity on his stomach (i.e. shoulder/neck strength stuff) and getting more comfortable on the mobility swing, which helps his spatial orientation. Both things that lugging a feeding pump around on your back can interfere with sometimes. And in feeding therapy, he continues to do well with his puree/baby cereal mix at a pretty thick consistency. He seems to really get a kick out of doing it himself now, although he, of course, has to throw a bit of drama in at the beginning before he digs in! (And you think I need a baby girl's drama on top of that? Boy howdy!) He also made a big step forward this morning by finally crunching through a very thick animal cracker. May sound simple to you, but for Keegan...trust me, it was big!
He had his GI check-up this morning. His weight is stable, and the doctor was very pleased with that after we cut a few ounces of the Elecare formula out a few weeks ago. His liver and spleen feel good. Sooooo, we've decided to trial run Keegan next Monday and Tuesday without his daytime tube feeds!! Personally, I think this is a little premature. While some hunger might increase the volume of the foods he's already eating, there's not necessarily reason to believe it will increase the progression of his oral skills. BUT there's still no real harm in trying it, just to see. He will be supported through it with a little bump in his nighttime feeds. He drinks enough water to keep him hydrated in addition to that. The worst thing that will happen is he'll lose some weight from a combo of not enough volume and dumping the extra food because his intestines can't handle it. But he has a bit of a cushion in his weight now, so a little weight loss can quickly be overcome by going back up on his feeds. Of course, if it doesn't seem to be going well, we can always stop the trial run. He has labs and a breathing treatment next Wednesday in the Center for Cancer and Blood Disorders, so we'll check in with GI while we're there to see how it went. Prayers would be GREATLY appreciated though!
Also, just a brief update that Keegan's kidneys appear stable, and the atrophied kidney even measured a bit larger this time. It was minor though, so very possible it was error. Still no news is good news! He had some particulate in his bladder that was a little red flag, but his urinalysis didn't show any problems. The best news is that this good report allows us to reduce his kidney monitoring to every six months unless his labs start to get worse! Yeah for good reports!
Other than that, we've just been playing and enjoying nicer weather. The baby seems to be doing well. She's definitely a fiesty one! She kicks ALL day long. Keegan wasn't a kicker; he was a pusher. He'd push a hand or foot out and just leave it there. I'd have to push back on him to get him to move. Not this gal! She is a mover and shaker. I can already tell she's going to shake this family up! Keegan's perspective changes daily - for every "uh huh" to "are you going to be a big brother?", we get a counter "nuh uh". Guess he'll either be elated or highly disappointed in June! ;) Speaking of which, we want to send a big congrats to our friends Ben and Abby (Lainey's parents)!! Baby boy Walker was born yesterday, and all are well. Lainey evidently was not too enthralled with her baby brother, even though she seemed to be pretty ready, putting her baby dolls "night night" in Walker's crib and all! Walker and his mom will come home tomorrow, so we'll be sure to update with pictures this weekend when Keegan gets to meet him.
Thank you as always for prayers for our Bug and all his little friends. Better sign off now to watch Shaun White get his gold medal. Did you know the Flying Tomato is a CHD (congenital heart defect) survivor?! A Tet actually (he had Tetralogy of Fallot; the defect Keegan and his friend Tucker had). Amazing! Go Shaun!! Go USA!!