We got home yesterday around 2. Li'l Empress took about an hour and a half to calm down, after crying the whole way home from the outpatient clinic. She spent most of the afternoon strapped in to her high chair watching Barney, coloring and brushing her teeth with her new toothbrush - all so she can't hurt herself from wobbling and weaving around the house! The wobblies and woozies will likely last till this afternoon at the latest.
The process of sedating her went as expected. The hardest part was how freaked out she always is by every dr. office we go to, and this time there were medical personnel all over the place. They gave her Versed to calm her nerves, and she got really loose, giddy, and silly on it. That was fun, but short-lived. The trauma of getting a good vein and being held down will thankfully be masked from her memory, as a side-effect of the Versed. The Boss and I, however, will have that sad memory for a while, I'm sure. It was actually very difficult to participate in the process. The worst thing was when she was finally done fighting the meds and she was falling asleep. Her little voice croaked out, in a teary little whisper, Shaggy's name. Oy! What a drama queen - but she got us and we both lost it with that one!
The tests themselves went very well. The full summary will not be available till next week, but the initial report from the ABR was excellent. The left ear was tested on the four most necessary frequencies for speech and language development and results came back NORMAL! The right ear was tested both with the sound device used on the left ear (similar to headphones) and with the bone conductive apparatus. With the bone apparatus attached (therefore bypassing the "air waves" of the ear canal), the four frequencies came back NORMAL! However, without the headphones, the loss of hearing is considered "profound." It's great news, as that means that there are working, developed parts inside the right side. That is not a surprise, as we know that there is no opening from the outside to the canal. Once the CT scan is read and interpreted, we'll know what the internal workings are that will determine future actions (hearing aid, constructive surgery, etc.) and how developed they are.
From the time she woke at 12:30 till about 2:45, she was VERY agitated, irritable, and down right MAD at us. She calmed down in time for the kids to get home and I'm thankful they didn't have to see her like that. It was very hard to watch, and very hard to know what to do for her. At first, it was kinda funny, to see her so mad and almost drunken in her responses (and very, very loopy!). But then it made me really sad. And she totally got us again in the recovery room, when her first coherent word was again a tearful "Shaggy." This girl really loves her big brother! That, or she thought maybe he'd swoop in and rescue her from all those mean people torturing her!
She stayed fairly calm and occupied right through dinner but by 7 p.m. had reached her threshold for the day. She lost her ability to cope and just melted down into a screaming puddle on the family room floor. She kept kicking her feet against the floor and swinging her head back and forth. Didn't want anyone anywhere near her for what felt like 15 minutes. I checked the clock and the whole thing really only lasted about 5 minutes. It was very hard to calm her enough to start her night time routine. But, when I heated her bottle and finally snuggled in with her, she was out in less that 15 minutes, only 2 1/2 ounces into the bottle. I'm so happy to say that she slept 12 hours straight and woke considerably happier. She's still loopy and wobbly, but is happy to munch her cereal and drink her juice with Elmo and Big Bird for a while.
Thanks all for your prayers and support and encouragement. We have so much more that we've learned about this process in recent weeks. If any of you want more information, please feel free to ask. I've tried to boil down this stuff to the basics and the most important stuff, but it still feels overwhelming to me most of the time. I can imagine that it's a lot for all of you to digest given that you aren't living it daily. I'm very grateful that, for a long while, this will be the last BIG day of Li'l Empress's medical journey! And after reading these long posts, I'm betting that you are too! :)
The process of sedating her went as expected. The hardest part was how freaked out she always is by every dr. office we go to, and this time there were medical personnel all over the place. They gave her Versed to calm her nerves, and she got really loose, giddy, and silly on it. That was fun, but short-lived. The trauma of getting a good vein and being held down will thankfully be masked from her memory, as a side-effect of the Versed. The Boss and I, however, will have that sad memory for a while, I'm sure. It was actually very difficult to participate in the process. The worst thing was when she was finally done fighting the meds and she was falling asleep. Her little voice croaked out, in a teary little whisper, Shaggy's name. Oy! What a drama queen - but she got us and we both lost it with that one!
The tests themselves went very well. The full summary will not be available till next week, but the initial report from the ABR was excellent. The left ear was tested on the four most necessary frequencies for speech and language development and results came back NORMAL! The right ear was tested both with the sound device used on the left ear (similar to headphones) and with the bone conductive apparatus. With the bone apparatus attached (therefore bypassing the "air waves" of the ear canal), the four frequencies came back NORMAL! However, without the headphones, the loss of hearing is considered "profound." It's great news, as that means that there are working, developed parts inside the right side. That is not a surprise, as we know that there is no opening from the outside to the canal. Once the CT scan is read and interpreted, we'll know what the internal workings are that will determine future actions (hearing aid, constructive surgery, etc.) and how developed they are.
From the time she woke at 12:30 till about 2:45, she was VERY agitated, irritable, and down right MAD at us. She calmed down in time for the kids to get home and I'm thankful they didn't have to see her like that. It was very hard to watch, and very hard to know what to do for her. At first, it was kinda funny, to see her so mad and almost drunken in her responses (and very, very loopy!). But then it made me really sad. And she totally got us again in the recovery room, when her first coherent word was again a tearful "Shaggy." This girl really loves her big brother! That, or she thought maybe he'd swoop in and rescue her from all those mean people torturing her!
She stayed fairly calm and occupied right through dinner but by 7 p.m. had reached her threshold for the day. She lost her ability to cope and just melted down into a screaming puddle on the family room floor. She kept kicking her feet against the floor and swinging her head back and forth. Didn't want anyone anywhere near her for what felt like 15 minutes. I checked the clock and the whole thing really only lasted about 5 minutes. It was very hard to calm her enough to start her night time routine. But, when I heated her bottle and finally snuggled in with her, she was out in less that 15 minutes, only 2 1/2 ounces into the bottle. I'm so happy to say that she slept 12 hours straight and woke considerably happier. She's still loopy and wobbly, but is happy to munch her cereal and drink her juice with Elmo and Big Bird for a while.
Thanks all for your prayers and support and encouragement. We have so much more that we've learned about this process in recent weeks. If any of you want more information, please feel free to ask. I've tried to boil down this stuff to the basics and the most important stuff, but it still feels overwhelming to me most of the time. I can imagine that it's a lot for all of you to digest given that you aren't living it daily. I'm very grateful that, for a long while, this will be the last BIG day of Li'l Empress's medical journey! And after reading these long posts, I'm betting that you are too! :)
6 comments:
I am excited for you all...I still believe in God's ability to heal her ear and her hearing. The initial reports that you shared sound so promising to me...unless I'm misinterpreting. I'll be believing for a complete healing - IN JESUS NAME!
I am so glad that things went well. It sounds like someone really loves there big brother. I will keep on praying for a miracle.
That is great news!!!! I am excited that NORMAL was expressed. God has her right where she needs to be "with the Gang".
Well ain't that just a big bunch of prayers answered? Is God good or what? Couldn't be happier for you!
Oh and on the 'tough to deal with part' - I hope I said that earlier it would be harder on you guys than her - it always is, and there is absolutely nothing you can do to make it better when they wake up, but that doesn't help the parent heartache!
Blessings - you have a lot of good news to celebrate - ok, maybe still a hurdle or two but from here on out - well it's just 'overcomeable'!
hugs - aus and co.
Sounds like good news ! It is so hard to see them upset and not themselves but thank God they do bounce back so quickly.
Poor baby girl. I am so glad to hear that things went well with the tests. That is fabulous! I hope it keeps getting better and better.
Hugs,
Jonni
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