and Connie tipped the scales at a whopping 24 pounds! He's gained 13 ounces in the last 13 days! So, I think it's safe to say that this boy is doing fine with eating. He's taking real food, blended in the "magic bullet" (thank you Grandma Marybelle, that thing is a godsend) and likes pretty much everything we've given him. I'm still measuring every ounce of liquid or solid that goes into him to show the dietician, OT and GI doc. He's generally eating the equivalent of two stage 2 jars of food for breakfast, lunch and dinner and two snacks a day with one jar at each snack. His liquid intake varies and depends on how full he's gotten during the meals. Sometimes he'll drink 2-3 ounces at a sitting, but usually he has an ounce at each meal/snacktime. I've been trying to remember to give him water during play, but it's hard to get in that habit. Especially since we never let Mary Kathleen have a cup of anything anywhere but at the table. They tell us that water actually increases the appetite, so we should start doing it more. Our OT said tonight when I called her to tell her the news that Connie should be like the poster child for fast recoveries. I'm thinking, "Eight months is fast?" But, she says that it often takes years for these he kids to start eating and when they do they really struggle. People can't believe that he's only been eating for a little less than three weeks and he's doing so well with it. Since Tuesday, we've been okayed to start introducing more textures. Some he does well with, some not so great. He's actually downed a whole cracker without throwing up, but sometimes one bite of something landing in just the wrong place in his mouth sends him over the edge. The other day he ate soggy Kix cereal and the first bite was chewed and swallowed, the next little round piece was bitten in half and choked and cleared and the third he vomited on. Obviously we're trying these new food textures at the beginning of meals so he's not losing any calories when he gags/throws up. It's all good practice for him so we're keeping up with it. He's able to successfully do real applesauce without pureeing it in juice now and fork mashed bananas. Our OT thinks that in another two weeks he'll probably be tolerating all meals at a fork mashed consistency. The problem with that is we'll have to find new creative ways to sneak extra calories in him. Now I can add sour cream, avocado, parmesan cheese, garbanzo beans, etc. to his food and he doesn't really know it and it's easy to get in him. That might change when we go to harder textures. We'll have to see.
The getting to sleep/staying asleep thing is still a work in progress. I always thought parents who said the cry it out method of teaching healthy sleep habits "didn't work for them" were just weak and pushovers! Now I think I'm admitting that it may not work for all children. First of all, 14 months old is not the typical age to start this. Secondly, children usually have a tough night or two and then gradually the amount of time they cry decreases each night until the light bulb goes off and they realize that it's in their best interest to just go to sleep without protest. Well folks, a true testament to how Connie's heart has healed is the fact that he has the energy to cry and cry and cry. Heart kids are supposed to be tired and sluggish and have no energy for anything. Especially endurance type activities. Not so with our little miracle! About our fifth night in, he increased his crying time from two hours to four and a half (yes, we did check on him periodically). Then he got himself so worked up that he vomited. I feared my worst nightmare was coming true--that he can make himself vomit if he's mad or doesn't like the way something is going. I've heard that some children make themselves throw up basically anytime they don't get their way. We decided a change of scenery would do everyone good so we set his port-a-crib up in the room with Mookie and tried that out. He got to be a part of her night time routine and he loved snuggling in her bed during story and prayer time. Then we put him in his bed and stayed in the room until he fell asleep. We also put a lullaby cd on and he liked that. So much so that when it went off an hour later he woke up. I went back in and sat on the floor next to his bed shushing until he fell back asleep. I put the music on repeat and he slept through until 7:22 this morning!. . .pause for putting him back to sleep. . .don't celebrate yet, it's taking over an hour to get him back to sleep today/tonight. His nap this afternoon took an hour and twenty five minutes before he fell asleep and then he only slept for 25 minutes. Tonight he fell asleep during prayers and woke up an hour later. Then it took forever, he fell back asleep and then woke minutes later again. I just got done with the second round of getting him back to sleep and I had to move Mookie out of the room as she was still up and it was past 10pm. Sheesh. My house is falling apart and I have no time to get anything started, let alone finished. This too shall pass, right?
Finally, Connie had his speech eval Monday, per the decision of the IFSP team based on our concerns that he is not saying any words and doesn't even really have that many consonant sounds. It was the opinion of the SLP that tested him that he should receive therapy 1X/month for now. At 18 months that may increase if he's still at about the same level. I expect he'll take off soon, but it's nice to have suggestions and someone following him in the meantime.
Happy Memorial Day weekend! We are so blessed to live in this country, aren't we? Every time I hear any negative political campaigning and Americans complaining, I think about many kids come here, to our country, to have their life-saving operations. I am grateful that so many fought to make this a place where the rest of the world wants to come so badly.
