Connie has been working hard and making notable progress with his physical development the past couple of weeks but his oral intake seemed to decline somewhat. The OT said that a decrease in appetite goes hand in hand with teething and since he's gotten a new tooth and another about to come through, it could explain things. He had been taking an average of 6-9 mL of milk with each feeding or at least 2X/day. With the holidays there was a stretch there where we didn't do a whole lot of other tastes/textures unless there was some table food that was safe for him to try (orange jello salad, potato casserole, etc.) but suprisingly, he took mashed bananas--even off a spoon--this week for the first time. We think he may actually prefer "real" food rather than baby food. He wasn't doing much from the spoon let alone closing his lips around it, but now we can get him to take two or three "bites" in one sitting. He has also has tried (and liked) some summer sausage and ritz crackers. Most of it is spit out, but this is normal when kids are learning to feed from a spoon. Today he took 16 mL (1/2 an ounce) of milk from the syringe in addition to his three bites of banana. We are so proud. On a side note, his PT, who hadn't seen him since the Friday before Christmas, was stunned at how much stronger he's gotten. She said that right now he's really in that transition time between sitting and going to all fours and once he gets it in the next few weeks he'll really take off from there. The transitions are the hardest, especially this transition for him. She said between his reflux and his chest wounds that it just isn't comfortable to put weight on your arms and learn to crawl. He is even standing with help at the couch for a few minutes! He looks so funny (and tall!) in that position. I guess because we're not used to seeing him like that.
I'm thinking of turning my closet into a mini-nursery! The deal is, Connie is getting a little big/mobile for the port-a-crib that is set up in our room. I think he'd enjoy a little more space, but I'm not ready for him to be back in the kid's room because I'm afraid he'll disrupt Mary Kathleen's sleep too much and I'm worried about him getting strangled in his feeding tubing and me not hearing all the shuffling like I would if he's in our room. So, I'm thinking of putting his crib into the closet and just moving those clothes down to the laundry room. We usually get dressed down there anyway because we don't want to wake him in the morning or at night by using our master bath.
Greg's company had their annual insurance rate increase this past month and the whole group had a 62% increase so our premiums all went up as well. That means that our portion (Greg's payroll deduction) of our family premium went up 274%. We're bumming about this, but feel very thankful that his company is still covering the majority of the premium. We are also confident that God will provide for all that we need. There is no lifetime max on this plan, though, so we are hoping they stay with this plan or a similar one.
Speaking of medical costs, we were pleasantly surprised to learn about a fundraiser for Connie that was held in Chicago this fall. Greg's brother and sister-in-law, Dave and Michelle, organized and conducted a raffle to benefit Conway's medical fund and it netted $2290! They bought an iPod and raffled it off, along with some donated prizes and it was a huge success. Thank you guys for your efforts and to all who took part in the raffle. What generosity! We also raised $172.50 and the Sharkey's fundraiser on 12/27! Thank you to all who attended and donated, especially Carol Stadler, Kathy Brown, Laurie Malloy, Kate House, Marge & Orville Schoene, Beth Eudy and Judy Schoene . Connie is so blessed to be loved by so many!
We go to the GI doctor tomorrow, so we'll likely update after that appointment.
Have a good day!
Tuesday, January 1, 2008
Connie continues to progress. Here's proof! He's bouncing in the exersaucer, especially when he watches his sisters jump on the trampoline. He discovered his first balloon yesterday and watching him play with such joy and wonder was amazing. We also learned that he does not like the sound of a drill. Greg has been building shelves downstairs to house all of these new toys that have accrued since Christmas and Connie is not a fan of the loud noises. I told Greg he probably has memories of the OR when they opened his chest. He has never been so averse to a noise before, be he seems genuinely scared! Anyway, here's the new video.
Posted by Erin Beckemeier at 2:17 PM