Ira News and Notes
We've had Ira in the house for two weeks now. (It will actually be two weeks on Wednesday.) Having him home is wonderful...and tiring. He's a lot of work but it's well worth it.
WALKS
We take Ira on walks. Not everyday but often enough. We put in him the Bjorn and cruise the hood. We've showed him off to a couple of businesses we frequent and of course, they think he's the cutest thing ever. (Maybe I'm exaggerating a little.) He gets plenty of stares on our walks as it's not often one sees a baby with wires. One guy in the pharmacy tonight flat-out asked, "What's wrong with your baby?" There was something about his honesty that was refreshing. It was much better than the confused glances people shoot our way.
NURSES
We've had nurses 24 hours a day since Ira's been home. That's been good and helpful, for the most part. Our freedom has certainly felt compromised at times (not being able to walk around in our underwear, for goodness sakes!) and our tempers have certainly flared at times as we feel our space shrinking but that's about to change as our coverage will change from 24 to 16 hours of care each day. We are more than capable and more than ready for this change. We hope to have nurses in two different shifts: 11 PM-7a.m. and 8a.m.-4 PM. That's sounds reasonable to us.
MORE ASSESSMENT
Ira had a host of visitors today. The Early Intervention team visited to do their assessment of Ira. A social worker, physical therapist, occupational therapist, feeding/speech therapist, and special ed. therapist overwhelmed our space. They woke Ira from a deep slumber. He was as unhappy about that as a teenager on a Saturday morning after a busy Friday night. But he recovered and put on a show. Fortunately and unfortunately, they are all going to recommend that Ira receive their individual therapies. In other words, he didn't pass. I think we'll ground him until he starts passing his tests.
SO HOW IS HE, REALLY?
Ira is good. He throws up quite a bit and hasn't gained much weight which will not be what the GI doctor will want to hear. We wakes several times in the night to help him recover from gas or throwing up. It hurts him really bad as it would any of us. We've only had a couple of episodes where we were close to calling 911. We think that's pretty good. All in all, Ira is good. Really. We love having him home. Sophia loves having him home and with how much Ira smiles, we think he loves being home.
IRA'S SOPHOMORE FILM
Finally, I've made a video of Ira's coming home. Jason was kind enough to shoot footage of the day. There was about 45 minutes of footage and I compressed it to a three minute video. Ugh, that was difficult. I've sent Laura's and my family the DVD and as soon as they get it and get a chance to see it, I'll post the movie so you can check it out. Thanks once again, Jason, for making that happen.
WALKS
We take Ira on walks. Not everyday but often enough. We put in him the Bjorn and cruise the hood. We've showed him off to a couple of businesses we frequent and of course, they think he's the cutest thing ever. (Maybe I'm exaggerating a little.) He gets plenty of stares on our walks as it's not often one sees a baby with wires. One guy in the pharmacy tonight flat-out asked, "What's wrong with your baby?" There was something about his honesty that was refreshing. It was much better than the confused glances people shoot our way.
NURSES
We've had nurses 24 hours a day since Ira's been home. That's been good and helpful, for the most part. Our freedom has certainly felt compromised at times (not being able to walk around in our underwear, for goodness sakes!) and our tempers have certainly flared at times as we feel our space shrinking but that's about to change as our coverage will change from 24 to 16 hours of care each day. We are more than capable and more than ready for this change. We hope to have nurses in two different shifts: 11 PM-7a.m. and 8a.m.-4 PM. That's sounds reasonable to us.
MORE ASSESSMENT
Ira had a host of visitors today. The Early Intervention team visited to do their assessment of Ira. A social worker, physical therapist, occupational therapist, feeding/speech therapist, and special ed. therapist overwhelmed our space. They woke Ira from a deep slumber. He was as unhappy about that as a teenager on a Saturday morning after a busy Friday night. But he recovered and put on a show. Fortunately and unfortunately, they are all going to recommend that Ira receive their individual therapies. In other words, he didn't pass. I think we'll ground him until he starts passing his tests.
SO HOW IS HE, REALLY?
Ira is good. He throws up quite a bit and hasn't gained much weight which will not be what the GI doctor will want to hear. We wakes several times in the night to help him recover from gas or throwing up. It hurts him really bad as it would any of us. We've only had a couple of episodes where we were close to calling 911. We think that's pretty good. All in all, Ira is good. Really. We love having him home. Sophia loves having him home and with how much Ira smiles, we think he loves being home.
IRA'S SOPHOMORE FILM
Finally, I've made a video of Ira's coming home. Jason was kind enough to shoot footage of the day. There was about 45 minutes of footage and I compressed it to a three minute video. Ugh, that was difficult. I've sent Laura's and my family the DVD and as soon as they get it and get a chance to see it, I'll post the movie so you can check it out. Thanks once again, Jason, for making that happen.
posted by jch at
7:20 PM
4 Comments:
Thank you for the update! I hope you are getting SOME sleep. (I am not here at my house). Take care.
Looking forward to seeing that video.....
Man, I know that feeling about the therapists who say, "Yep, your kid needs what I do." You're disappointed that there's nobody saying, "Nope! Not this kid! Doing fine as far as my specialty is concerned!" But you're also relieved that they see what's needful and are available to provide it. I always kinda' love-hate those special needs people. Thank God for them; wish they would go away.
peace -- Katie
Give that sweet boy some extra smooches from his cyber-friends!
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