We had Connie's re-eval yesterday to determine what therapy needs exist for the next six months. Carey (coordinator), Deb (PT) and Chris (SLP) all attended. Of course they fussed over him because he's so darn cute. He graced them all with his piano playing abilities and showed off his new "Melmo" (Elmo) books he had just gotten from Barnes and Noble earlier in the day.
PT: Deb is impressed with his ability to walk down the slope of the front yard and to go from grass to concrete surfaces and down different levels and small steps. She is still concerned about his ankle strength and wants to continue getting better at tip-toeing. He is going to get new orthotics but they will be the same kind (Sure Steps) as the one's he's in now. I'm so bummed because I desperately want him to wear those cute navy blue stride rite fisherman sandals this summer, but I guess we'll wait one more year :( He'll look darling in his new nike kicks though. We're decreasing his PT services to one hour every other month! We'll have to get our Ms. Deb fix at church, I guess!
Speech: Chris says Connie is making progress every week. He is still leaving off word endings and initial consonants so his intelligibility is rather poor. We are trying to use the phrase, "Use your words" with him to get him to stop relying on signs and gestures to get his point across. It will be hard for us to do this because we just know what he means and he doesn't have to use speech. It will be good for him to be around new people and kids when he starts "school" next week and maybe he'll pick up some new words and good speech habits. She said since he is so smart we are going to have to sabotage him and "ruffle his feathers" a bit to get him to verbalize more. She is going to try to see him a few extra times at school and try to see if a new environment is motivating for him. She'll keep coming to the house 1X/week. We asked about increasing, since the ped. recommended it, but since he's showing improvement, it wouldn't be covered at this point.
The team will reconvene in late Aug. or early Sep. for the next re-eval and to start planning the transition to services from the local school district. Then they will have us sign releases to communicate with the early childhood people in Fort Zumwalt and then just before he turns three FZ will conduct testing to see what he qualifies for. He may qualify for speech still, which could mean that he would be attending United Services for his therapy and receiving it during preschool setting. It may mean that he will go there for preschool full-time, but we're not sure yet what his needs will be at that time. If that were the case, he would start right when he turns three rather than waiting until the following school year, the '10-'11 school year like we would have done if we put him in Mary Kathleen's preschool. That's still some time away, but it really hit me when they brought it up yesterday. I guess it will be here before we know it.
Now that you've gotten the latest on WonderBoy, I want to ask that you pray for a fellow L-TGA kiddo who will be undergoing his big double switch operation like Connie had next Thursday. He lives in London, UK and his name is Oscar. He is a lot older than Connie was when he had it done (he's three now) and his mom is worried about the emotional trauma involved. He's saying he doesn't want to have it done and asking why it has to be done. Please pray that God gives his mom Laura the right answers for her little boy and that He gives her peace to know she's made the right decision. We know all too well the feeling of taking a "healthy" boy in for surgery and the questioning and doubt that looms with such an action. I'll post updates as soon as I hear how he's doing.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
Wednesday, March 25, 2009
with Connie. We left the house at 8pm and just made it home at 12:44am! Not too long after dinner the kids went out back to look for rainbows. On his way back in the house, he tripped on the threshold and hit his head on the door frame. He cried pretty hard but I just figured it hurt. I didn't see any marks right away. I sat him in his seat for some strawberries and when I finished slicing them, I saw the blood on his eyelid. He had hit that orbital bone and split open his eyelid right above his right eye in the corner nearest the temple. I called Dr. Davis' exchange and the nurses from Children's hospital called back. He was acting fine and it had stopped bleeding. It isn't very big at all and they asked all the questions that they ask for cuts and also the questions for head trauma. All checked out great except for one. When she heard that the cut was on the eyelid she said that the guidelines they have are to go to the ER. Doesn't even warrant a call to the doctor, it's supposed to be a trip in. Ugh. Greg and I really didn't think they'd do anything for it, but I was kind of glad to get a second opinion. We were advised to go into St. John's since they already have a record of him there and both his main doctors have privileges there. They were packed. There were kids all over the place who had obviously been puking because they were carrying around buckets with them. They were nice enough to let us wait in a little storage room that patients don't usually go in so that we could hopefully prevent Connie from getting any bugs. They didn't have any rooms open up until after 11pm. It was a long wait and lots of entertaining. It is exhausting trying to entertain a two year old when you don't want him to touch anything! He climbed up into his stroller and then jumped down about a gazillion times then when we finally got an exam room he jumped up and down on the bed about a gazillion times. He definitely didn't act like he needed to be there, but we had to follow the "protocol". Finally we got checked out and we were told that sometimes less is more and in the case of a "deep superficial cut" like he has, it is better to leave it alone. We will wash it daily with soap and water and apply an antibiotic ointment that is safe to get in the eyes. Other than that, it should heal nicely and the only time we'll be able to notice it in the future is that it may stay white when the rest of his face tans.
I'm off to bed. Hopefully he'll let me sleep in tomorrow (I mean. . .today)!
I'm off to bed. Hopefully he'll let me sleep in tomorrow (I mean. . .today)!
Posted by Erin Beckemeier at 12:44 AM
Tuesday, March 24, 2009
Conway went to Dr. Davis for his two year check-up today. I waited a few weeks after his birthday so I could take him during my spring break. He weighed in at 26 lbs. 4 oz. which puts him barely at the 25th percentile. Looks like we'll be keeping the whole milk for another year and trying to add in some good calories where ever we can. He loves "nog nog" (carnation instant breakfast chocolate flavor) added to his milk so that's one snack we'll be trying to make sure he has everyday. He's 34.5 inches tall which is in the 60th percentile for height. I'm not too worried considering Mary Kathleen had almost the exact same stats at her two year check-up. She was 34.5 inches and 25.4 lbs. Of course, she's a girl, but still. Now she's in the 75th percentile for height and weight!
Dr. Davis said that since he isn't putting two words together yet (like saying "dog bark") that we might want to consider increasing his speech therapy. He is happy to see that his receptive language is on target though. He passed all the little screenings for autism and lead poisoning. He had his lead levels checked several weeks ago when his dig levels were checked for Dr. Bromberg so we already knew that wasn't a concern.
I asked Dr. Davis about his opinion on Connie getting an April dose of Synagis, the vaccine for RSV that preemies and heart kids get from Nov-March for the first two years of life. He said that since Connie will be starting "preschool" next week that it would be a good idea to get one more dose in since the RSV season is running late this year. That means that most of the cases they've seen have been recently and the season isn't "over" yet. We put a call in to Dr. Bromberg and his nurse, Kelly, agreed that with being around other kids it would be a good idea. So now they will try to coordinate benefits with insurance and insurance will probably deny and then we'll probably have to fight and write letters! Nothing is easy. It is all about money and the insurance company doesn't want to spend another $3300 for another month's injection.
Stay tuned next week for an update after Connie's first day of preschool. He'll be going to Ft. Zumwalt North's Child Care Lab three mornings a week for 2.5 hours per morning. Monday is an Open House where Daddy will stay with him the whole time and he'll get comfortable with his classroom and the new people. Then Tues, Weds and Thurs he'll go to "school". This program lasts until the middle of May. It should be a good experience for him to be around other kids his age. I'm hoping his speech development will really take off, but I'm crossing my fingers that all the winter germs are gone by then!
Posted by Erin Beckemeier at 6:15 PM