I am so bummed, CHOP cannot fit us in July 5th and 6th, so now we have to postpone until the end of August. Literally, it's August 28th now. The slew of emotions that I have gone through today have left me completely exhausted. For months now I have fixated on June 20 as the answer to when we can get on with life. We have been in limbo for so long, and its mentally draining. Not knowing when Caelen will need his next surgery is such a weight that sits on my shoulders. It's hard to plan anything more than a few months at a time because we never know what's in store.
I know that August 28th is only 2 months away, but when I've already waited 6 months, another 2 months seems like an eternity. I try to stay upbeat and roll with the punches but right now, I feel like I've been knocked out.
So here's to waiting...again.
Katye
Wednesday, June 20, 2012
Cath delay
We were supposed to have left yesterday for Philly, but the nasty cold that Caelen got at school 2 weeks ago is still lingering, and of course it went to his ears. He was once again kind enough to share it with me. So we are waiting to hear back from the CHOP scheduling team, but it looks like we will be going up July 5 for pre-admission and the cath on July 6. If all goes well and no intervention is needed, then we go home that night, otherwise they'll keep us for observation and we go home on July 7. Then we pack up and leave for Florida on July 8.
Talk about cutting it close. But I am really excited about going home to Florida again for the summer to visit with my family and friends. Caelen will enjoy his visit so much more this time, now that he's walking and talking and I think he'll get along better with cousin Lily. Hopefully there will be no more pinching on Caelen's part. And while we are down there, Caelen will attend Lily's pre-school and be in her class, so I'm excited for him to be with other 2 year olds.
Currently, the school that Caelen attends here in MD has him in with the 1 year olds, and all but 1 child that he started with has moved up to the 2 year olds. They told me that they have no room for him in the 2 year olds, yet I keep watching them leave his class, so I'm a bit frustrated with his school. But that's a story for a different day.
I mentioned that Caelen is talking now and he's so funny. Gabba is still his favorite word, and if he could, he would watch that show all day long. But now we are hearing 2 words together, and with more frequency, 3 words. He can sing his ABC's and can recognize each letter too. He can count to 10 but doesn't know numbers yet. It's so much fun to watch him while he plays and see his brain working.
We are on track for ECI in the fall and he'll go 5 mornings a week. With him being in the ECI program at the local elementary school, he'll no longer receive therapy at home from the county. So of course I'll miss the individual attention he receives, but I know that he'll thrive in the classroom setting with other children and therapists.
Other than that we are preparing for our first heat wave in the upper 90's today and tomorrow. We'll be doing lots of indoor activities today.
Last but not least, here's a few recent pics of Mr. C.
Love, Katye, Martin & Caelen
Talk about cutting it close. But I am really excited about going home to Florida again for the summer to visit with my family and friends. Caelen will enjoy his visit so much more this time, now that he's walking and talking and I think he'll get along better with cousin Lily. Hopefully there will be no more pinching on Caelen's part. And while we are down there, Caelen will attend Lily's pre-school and be in her class, so I'm excited for him to be with other 2 year olds.
Currently, the school that Caelen attends here in MD has him in with the 1 year olds, and all but 1 child that he started with has moved up to the 2 year olds. They told me that they have no room for him in the 2 year olds, yet I keep watching them leave his class, so I'm a bit frustrated with his school. But that's a story for a different day.
I mentioned that Caelen is talking now and he's so funny. Gabba is still his favorite word, and if he could, he would watch that show all day long. But now we are hearing 2 words together, and with more frequency, 3 words. He can sing his ABC's and can recognize each letter too. He can count to 10 but doesn't know numbers yet. It's so much fun to watch him while he plays and see his brain working.
We are on track for ECI in the fall and he'll go 5 mornings a week. With him being in the ECI program at the local elementary school, he'll no longer receive therapy at home from the county. So of course I'll miss the individual attention he receives, but I know that he'll thrive in the classroom setting with other children and therapists.
Other than that we are preparing for our first heat wave in the upper 90's today and tomorrow. We'll be doing lots of indoor activities today.
Last but not least, here's a few recent pics of Mr. C.
Father's Day
Love, Katye, Martin & Caelen
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