Emmy's developmental therapist brought over a new "toy" the week before last. She brought a big tub of rice for our Miss E. The idea is to help with sensory issues. She's not totally sold on it yet, but she is "tolerating" it. Here she is in the tub today.
Wednesday, August 31, 2011
Monday, August 29, 2011
another big day
we have another big day tomorrow. e is finally getting the ear tubes we've been anxiously awaiting. we have to be at the hospital at 5:30 am. ouch! but she's the first surgery of the day, so we are happy about that. please keep us in your thoughts and prayers. and for your pleasure, here are some shots from this past weekend courtesy of the wonderful simko.
Thursday, August 25, 2011
love and support
There have been so many wonderful friends and family who have offered words of encouragement, prayers and support during the last six months. You all will never know how much that means to us. We weren't always able to answer the phone, return the text or email back, but it doesn't mean the message wasn't received and appreciated.
In the beginning, it was tough emotionally to answer the phone or respond with a text. We were going through so much and I found it easier to isolate. As time has gone on, I've been coming out of my shell more. I'm more willing and able to talk about what's going on. I'm more willing and able to have visitors. But there's also this deficit of time that it makes it tough to return every call, text, email. . .or to make it to every event or social gathering. There just isn't enough time in the day to work, maintain a household, eat, pay bills, clean, exercise Daisy and care for this sweet (albeit very demanding) child of ours. So to those of you who don't hold that against me, thank you! Right now I'm probably giving a little less to our relationships than you are, but that's the way it has to be. And I know the strong relationships will survive and flourish.
I also have a whole new set of "friends" whom I've never met in person all around the world. These are the ladies (and some men) who are experiencing the same (or similar) challenges as we are. To this group, I am eternally grateful. You ladies offer advice and knowledge deeper and better than the best doctors we've seen. Walking in the footsteps of the paths you have forged gives me hope for the future. Your children are beautiful, your stories inspiring and your spirits lift me up in my darkest hours.
And finally, for those who ask what you can do to help us. It's simple. It's less about the physical things, although we always enjoy a visit or a homemade meal or both! It's just being there through the thick and thin. We are doing better every day, but we still have a long road. Don't give up on us. Keep sharing the love, support and words of wisdom. We need that more than anything. I know it's tough to relate to what we are going through. We don't expect you to. But giving us your unconditional love through a simple phone call, text or email means so much.
With that, I'll leave you with a recent photo of our sweet girl.
In the beginning, it was tough emotionally to answer the phone or respond with a text. We were going through so much and I found it easier to isolate. As time has gone on, I've been coming out of my shell more. I'm more willing and able to talk about what's going on. I'm more willing and able to have visitors. But there's also this deficit of time that it makes it tough to return every call, text, email. . .or to make it to every event or social gathering. There just isn't enough time in the day to work, maintain a household, eat, pay bills, clean, exercise Daisy and care for this sweet (albeit very demanding) child of ours. So to those of you who don't hold that against me, thank you! Right now I'm probably giving a little less to our relationships than you are, but that's the way it has to be. And I know the strong relationships will survive and flourish.
I also have a whole new set of "friends" whom I've never met in person all around the world. These are the ladies (and some men) who are experiencing the same (or similar) challenges as we are. To this group, I am eternally grateful. You ladies offer advice and knowledge deeper and better than the best doctors we've seen. Walking in the footsteps of the paths you have forged gives me hope for the future. Your children are beautiful, your stories inspiring and your spirits lift me up in my darkest hours.
And finally, for those who ask what you can do to help us. It's simple. It's less about the physical things, although we always enjoy a visit or a homemade meal or both! It's just being there through the thick and thin. We are doing better every day, but we still have a long road. Don't give up on us. Keep sharing the love, support and words of wisdom. We need that more than anything. I know it's tough to relate to what we are going through. We don't expect you to. But giving us your unconditional love through a simple phone call, text or email means so much.
With that, I'll leave you with a recent photo of our sweet girl.
Wednesday, August 24, 2011
family photo
adam and i had our first solo night time outing since having baby emmy last weekend. my mom was in town helping out with emmy while i was away on a work trip in nyc last week. the timing was perfect as we had been invited to the wedding of our very dear friends on saturday night. had my mom not been here, we likely would not have been able to attend. we've yet to find anyone to watch emmy on nights or weekends, although the hunt is on and i have a couple of candidates in mind. more on that later.
anyway, since we were nice and cleaned up for the wedding, we thought it a good time to capture a family photo. . .one that didn't involve me with a dirty ponytail and sweatpants. unfortunately, emmy was not feeling up to a photo session at this particular moment. but like any good parent, we forced her to participate. and this is what we got.
anyway, since we were nice and cleaned up for the wedding, we thought it a good time to capture a family photo. . .one that didn't involve me with a dirty ponytail and sweatpants. unfortunately, emmy was not feeling up to a photo session at this particular moment. but like any good parent, we forced her to participate. and this is what we got.
Thursday, August 11, 2011
6 months down the road
Well it's unbelievable, but true. Our little girl is celebrating her half a year birthday today. I can't believe it has been six whole months since the best/worst day of my life. I'm not allowing myself to really think about what was happening six months ago today. I'll save that for the first year birthday when I imagine it'll be unavoidable.
In honor of this milestone, we decided Emerson should try real food. She tried mangoes. And I'm pretty sure she really enjoyed them. Here's the proof:
We continue to work on feeding therapy and she has made some slow and steady progress in her sucking and swallowing. Slow and steady wins the race.
On another positive note, we heard back from the neurologists about her 72 hour VEEG. It seems I was incorrect in the last post when I said she is having seizures. She is not!!!! He said they did not see seizure activity, but rather "activity that indicates ongoing risk of seizures, specifically arising from the left frontal and central region of Emerson's brain. This is the rationale for starting Topamax, which provides protection from infantile spasms as well as other seizure types." Well hallelujah. That's good news and we'll take it.
In honor of this milestone, we decided Emerson should try real food. She tried mangoes. And I'm pretty sure she really enjoyed them. Here's the proof:
We continue to work on feeding therapy and she has made some slow and steady progress in her sucking and swallowing. Slow and steady wins the race.
On another positive note, we heard back from the neurologists about her 72 hour VEEG. It seems I was incorrect in the last post when I said she is having seizures. She is not!!!! He said they did not see seizure activity, but rather "activity that indicates ongoing risk of seizures, specifically arising from the left frontal and central region of Emerson's brain. This is the rationale for starting Topamax, which provides protection from infantile spasms as well as other seizure types." Well hallelujah. That's good news and we'll take it.
Friday, August 5, 2011
A tough week
precious feet before the poking began
I stood peering through a wire file rack, tears streaming down my face, as three doctors held down my precious baby. She was screaming to the point that her cry had dwindled to a low throaty almost mute sound. She had run out of tears. Her face was red. Her arms, legs and feet were bruised with puncture wounds from way too many failed attempts at placing an IV in her tiny veins. The doctors had asked me to help hold her down and keep her calm, but I refused. I was torn. I didn't want her to think I had abandoned her to let these horrible people hurt her. But I also didn't want her to think I would partake in anything that would traumatize her so much. I want her to know I am safe. I want her to know I won't hurt her. I want her to know that she is always protected in my arms.
So I hid behind the file rack. But much like when you cover your eyes because something is too tough to watch, I realized that I couldn't help watching. I needed to know that despite her pain, she was still there and still ok. So like when you open your fingers and peek through to watch the train wreck, I watched. And I cried. After failed attempts by four nurses and one doctor, one man was finally able to successfully place the IV on the first try. He then called me over and with much sincerity, looked me in the eyes and said: "I'm sorry that she had to go through this." And although it didn't make the pain go away for me or for her, it was comforting to know that this doctor seemed to care. There are too many who don't.
hanging out in the ER
We had checked into the hospital, via the emergency room at 8 am on Monday morning. It had been a bit of journey to get to this point. About two months ago, Emerson started having strange episodes that we feared might be seizures. Her risk for seizures is very high considering her history. Each time we went in for an EEG, there was not sufficient evidence that she was having seizures. But I knew in my gut that she was. So a few weeks ago, we went in yet again for another EEG at Children's Hospital Los Angeles. And finally, my fear was recognized. Not only did the EEG show she was having seizures, but that they were the worst possible kind, infantile spasms. Her neurologist seemed very lackadaisical about the whole thing and prescribed a medication that I knew wasn't even a frontline treatment for these very serious and devastating seizures. I knew I needed a second opinion and a doctor I had more faith in. I knew time was of the essence.
These are the infantile spasms. I share this video to help others wondering what these kind of seizures look like who may stumble upon my blog.
I had been trying to get in to the epilepsy specialists at UCLA's Children's Hospital with little luck. I knew I could try harder. So I put on my research hat, a talent of mine, and went to the internet. It didn't take much to find the direct email address to Dr. Sankar who is the head of that department. I took a shot in the dark and emailed him directly. Within a few short hours, he responded and the ball begun rolling. That was last Thursday afternoon and by Friday morning the plan had been made to check in for testing first thing Monday morning. We expected to stay only 24 hours for the EEG, but we ended up staying four days for a 72 EEG as well as a PET/CT scan and MRI.
EEG electrodes literally super glued to her head
So there is good news and bad news. The good news is, no hypssarhythmia showed up on the EEG. This is the very specific pattern that shows up on the EEG when a child is having infantile spasms. This doesn't mean she didn't have it before, nor does it mean it can't show up in the future. But we live in the moment, and for now, it is not there. And that is glorious. But she is having seizures. We haven't gotten the full breakdown of what types of seizures she is having, but we know there is some activity. So last night we started an anti-convulsant medication called Topamax. Finally last night, we both got to sleep in our own beds. What a wonderful feeling that was.
after the first day, a mesh hat was added to keep the electrodes secure against her head
Today, it is back into reality with a bang. In the hospital, it seems like the world stands still. But once I opened my computer, I realized it didn't. I have over 300 emails sitting in my work account and another 200 in my personal account. I have a list of projects that would have kept me busy all week, but now need to be done in one day. I wish I could catch up on the sleep I didn't get this week in the hospital. But I have to take advantage of the 8 hours I have a nurse today and try to get back on top of work.
in recovery, just waking up after sedation for the PET/CT and MRI
All this while, I feel the pull of my sweet, innocent, beautiful child. Because I know there is only one thing I can do to comfort her. I feel helpless in so many ways when it comes to her, but I know that holding her provides her comfort. It seems like doing anything but that is so completely insignificant.
But we will march on.
I stood peering through a wire file rack, tears streaming down my face, as three doctors held down my precious baby. She was screaming to the point that her cry had dwindled to a low throaty almost mute sound. She had run out of tears. Her face was red. Her arms, legs and feet were bruised with puncture wounds from way too many failed attempts at placing an IV in her tiny veins. The doctors had asked me to help hold her down and keep her calm, but I refused. I was torn. I didn't want her to think I had abandoned her to let these horrible people hurt her. But I also didn't want her to think I would partake in anything that would traumatize her so much. I want her to know I am safe. I want her to know I won't hurt her. I want her to know that she is always protected in my arms.
So I hid behind the file rack. But much like when you cover your eyes because something is too tough to watch, I realized that I couldn't help watching. I needed to know that despite her pain, she was still there and still ok. So like when you open your fingers and peek through to watch the train wreck, I watched. And I cried. After failed attempts by four nurses and one doctor, one man was finally able to successfully place the IV on the first try. He then called me over and with much sincerity, looked me in the eyes and said: "I'm sorry that she had to go through this." And although it didn't make the pain go away for me or for her, it was comforting to know that this doctor seemed to care. There are too many who don't.
hanging out in the ER
We had checked into the hospital, via the emergency room at 8 am on Monday morning. It had been a bit of journey to get to this point. About two months ago, Emerson started having strange episodes that we feared might be seizures. Her risk for seizures is very high considering her history. Each time we went in for an EEG, there was not sufficient evidence that she was having seizures. But I knew in my gut that she was. So a few weeks ago, we went in yet again for another EEG at Children's Hospital Los Angeles. And finally, my fear was recognized. Not only did the EEG show she was having seizures, but that they were the worst possible kind, infantile spasms. Her neurologist seemed very lackadaisical about the whole thing and prescribed a medication that I knew wasn't even a frontline treatment for these very serious and devastating seizures. I knew I needed a second opinion and a doctor I had more faith in. I knew time was of the essence.
These are the infantile spasms. I share this video to help others wondering what these kind of seizures look like who may stumble upon my blog.
I had been trying to get in to the epilepsy specialists at UCLA's Children's Hospital with little luck. I knew I could try harder. So I put on my research hat, a talent of mine, and went to the internet. It didn't take much to find the direct email address to Dr. Sankar who is the head of that department. I took a shot in the dark and emailed him directly. Within a few short hours, he responded and the ball begun rolling. That was last Thursday afternoon and by Friday morning the plan had been made to check in for testing first thing Monday morning. We expected to stay only 24 hours for the EEG, but we ended up staying four days for a 72 EEG as well as a PET/CT scan and MRI.
EEG electrodes literally super glued to her head
So there is good news and bad news. The good news is, no hypssarhythmia showed up on the EEG. This is the very specific pattern that shows up on the EEG when a child is having infantile spasms. This doesn't mean she didn't have it before, nor does it mean it can't show up in the future. But we live in the moment, and for now, it is not there. And that is glorious. But she is having seizures. We haven't gotten the full breakdown of what types of seizures she is having, but we know there is some activity. So last night we started an anti-convulsant medication called Topamax. Finally last night, we both got to sleep in our own beds. What a wonderful feeling that was.
after the first day, a mesh hat was added to keep the electrodes secure against her head
Today, it is back into reality with a bang. In the hospital, it seems like the world stands still. But once I opened my computer, I realized it didn't. I have over 300 emails sitting in my work account and another 200 in my personal account. I have a list of projects that would have kept me busy all week, but now need to be done in one day. I wish I could catch up on the sleep I didn't get this week in the hospital. But I have to take advantage of the 8 hours I have a nurse today and try to get back on top of work.
in recovery, just waking up after sedation for the PET/CT and MRI
All this while, I feel the pull of my sweet, innocent, beautiful child. Because I know there is only one thing I can do to comfort her. I feel helpless in so many ways when it comes to her, but I know that holding her provides her comfort. It seems like doing anything but that is so completely insignificant.
But we will march on.
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