Emmalin and I just got back from her 2 week check up at the St. Louis Children's Hospital. Dr. Lembrick said her incision looks great! She can start therapy back again (slowly) and she can now have a regular bath (I am SO excited about that)! He said her stitches should start coming out slowly (they are the dissolvable ones) and that he would like to see us back in a couple of months. We will now follow up with Emmalin's neurologist in 4-6 weeks and start talking about medication adjustments.
As far as Emmalin's progress 2 weeks after surgery, she's still doing AMAZING!!
Seizures: She's still having some, but the intensity and length have decreased dramatically!! Every once in a while she still has a "rough seizure day", but it is still NOTHING compared to what it was like before the surgery! At this point, some days she will have none, and then others she will have some that are seconds. Her longest seizure, here lately, is about 1.5 minutes. Before the surgery she was always pushing 3-5 minutes when she would have a seizure.
Emmalin still seems to be aware of a little more around her, and she definitely still has more of an opinion about what she DOESN'T like. She is also still talking a little more and moving all the time!!!
At this point, Jarrad and I are still very grateful that we chose for Emmalin to have the surgery!! I'm glad it's over and that Emmalin is recovering so quickly!!
God is SO good!!
Emmalin Age: 7.5
Friday, May 18, 2012
Wednesday, May 9, 2012
Since We've Been Home
Literally within 9 hours of my last post, Emmalin's neurosurgeon came in and said that Emmalin was showing all the signs he needed to see to be able to release her. Her swelling in her right eye was down 75%, so by 1:30 that afternoon, we were on our way back home (and before we left Em's eye swelling was almost completely gone)! No one, including me and Jarrad expected to go home so quickly. I tell you what, Emmalin just continues to blow us away on how resilient she truly is throughout all of this stuff! She is by far toughest person I have ever known!!
Since we have been home, Emmalin is still doing great! Her right eye still swells sometimes, but we have been told that her eye swelling could happen on and off throughout the next 2 weeks. As long as her incision isn't swelling or draining, we are good to go!
As far as how her seizures have been, so far they are still there, but the intensity has decreased and she isn't having them as often. The doctors have told us that her brain may still have some swelling at this point and things inside her head are still trying to "adjust". Because of all of this, we will not know for a month on what the surgery will officially do for Emmalin.
When it comes to everything else, Emmalin seems to definitely be talking more. Yes, she is still non-verbal so it isn't "mama" or "dada", but it's still sounds. Those sounds are, by far, the most AMAZING sounds I have heard in a REALLY long time!!
Also the past couple of days, Emmalin is moving ALL THE TIME!!! I am excited to get her clearance from the doctor so I can start working with her in the floor on rolling (and other things) again!!!
The last thing I have noticed so far is that Emmalin has more of an opinion on what she doesn't want/like. It is SO cute!! She has had a little bit of an opinion before, but it's just a little stronger now and more often. I LOVE IT!!!
As I said before, the doctors say it is too soon to be able to say exactly what the surgery will "officially" do for her, but all of the things that we are seeing are very good "signs" that the surgery was very successful!
Since we have been home, Emmalin is still doing great! Her right eye still swells sometimes, but we have been told that her eye swelling could happen on and off throughout the next 2 weeks. As long as her incision isn't swelling or draining, we are good to go!
As far as how her seizures have been, so far they are still there, but the intensity has decreased and she isn't having them as often. The doctors have told us that her brain may still have some swelling at this point and things inside her head are still trying to "adjust". Because of all of this, we will not know for a month on what the surgery will officially do for Emmalin.
When it comes to everything else, Emmalin seems to definitely be talking more. Yes, she is still non-verbal so it isn't "mama" or "dada", but it's still sounds. Those sounds are, by far, the most AMAZING sounds I have heard in a REALLY long time!!
Also the past couple of days, Emmalin is moving ALL THE TIME!!! I am excited to get her clearance from the doctor so I can start working with her in the floor on rolling (and other things) again!!!
The last thing I have noticed so far is that Emmalin has more of an opinion on what she doesn't want/like. It is SO cute!! She has had a little bit of an opinion before, but it's just a little stronger now and more often. I LOVE IT!!!
As I said before, the doctors say it is too soon to be able to say exactly what the surgery will "officially" do for her, but all of the things that we are seeing are very good "signs" that the surgery was very successful!
More Pictures Of Emmalin While She Was In The Hospital
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| This is Emmalin in the hospital 2 weeks before her surgery during her 24 hour EEG |
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| Emmalin in the PICU with her Uncle Corey and Aunt Jessica |
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| Emmalin Friday, 48 hours after surgery. |
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| Emmalin sleeping Saturday (the day we got to come home) |
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| Closer view of Emmalin sleeping the day we got to come home :) |
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| Emmalin waiting to get clearance to go home :) |
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| On our way home!!! |
Friday, May 4, 2012
24 and 36 Hours After Surgery
Yesterday we started off the day in the PICU. Emmalin had a pretty good night and had very minimal swelling in her face by the time she woke up. She had to do another sedated MRI at 8:30am and then we returned to the PICU. When she got back, Emmalin's right eye had began to swell. We had been told that this could have been one of the side effects from the surgery. It was nothing that was "serious" but that if it happened, her eye would probably swell completely shut for most of a day before it started to get better. So just as we had been told, as the day progressed, Emmalin's swelling in her eye continued to get worse.
Later that day we got the results from the MRI confirming that they were able to cut through the entire thing (for her corpus callosotomy surgery) and that she showed NO signs of stroke :)
We were moved from the PICU to the 12th floor around 7:00pm, got settled in and went to bed.
Seizure wise, Emmalin did have a couple of seizures. We do feel that they were VERY minimal compared to before her surgery. Emmalin's neurosurgeon had said that her seizures may continue to decrease over the next month, but nothing is guaranteed.
Emmalin had an amazing night last night, but by this morning, Emmalin's eye was indeed swollen shut. Today was the day that we got to add back in all her eating and start moving her out of her bed a little. She has had several seizures today (still smaller than before). As of this moment, she seems to not be feeling the best and she has started running a little bit of a temperature again :( On a positive note, her swelling in her eye does seem to be starting to go down a little bit :)
So looking at the "over all picture" of Emmalin's recovery, Emmalin is still doing incredibly well! She continues to blow us away by how tough and resilient she is!!
God Is Good
Later that day we got the results from the MRI confirming that they were able to cut through the entire thing (for her corpus callosotomy surgery) and that she showed NO signs of stroke :)
We were moved from the PICU to the 12th floor around 7:00pm, got settled in and went to bed.
Seizure wise, Emmalin did have a couple of seizures. We do feel that they were VERY minimal compared to before her surgery. Emmalin's neurosurgeon had said that her seizures may continue to decrease over the next month, but nothing is guaranteed.
Emmalin had an amazing night last night, but by this morning, Emmalin's eye was indeed swollen shut. Today was the day that we got to add back in all her eating and start moving her out of her bed a little. She has had several seizures today (still smaller than before). As of this moment, she seems to not be feeling the best and she has started running a little bit of a temperature again :( On a positive note, her swelling in her eye does seem to be starting to go down a little bit :)
So looking at the "over all picture" of Emmalin's recovery, Emmalin is still doing incredibly well! She continues to blow us away by how tough and resilient she is!!
God Is Good
Some pictures before and after Emmalin's brain surgery (corpus callosotomy)
I wanted to post some pictures about how Emmalin is doing and what the progression has been like so far on this crazy "journey". We feel very blessed that Emmalin is doing SO well and we hope and pray to continue to move in this direction so she can go home soon!!
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| Emmalin before surgery still snoozing :) |
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| One view of the incision |
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| Our beautiful girl hours after sugery while in the PICU |
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| A better view of the incision |
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| Emmalin in the PICU after surgery |
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| Our family after surgery in the PICU |
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| Daddy (AKA Jarrad) and Emmalin in the PICU |
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| Day #2 after her surgery. Her eye is swollen shut :( |
Wednesday, May 2, 2012
Surgery Day
This has been one of the scariest days of my life!! Today Jarrad and I took Emmalin to the St. Louis Children's Hospital to have a Corpus Callosotomy done (that's a brain surgery). This is something that NO parent should have to do with their children and I hope that we NEVER have to repeat it!!! Sitting in a room knowing that there is a doctor, just down the hall, who is cutting on our child's BRAIN!!! Let me just say, I'm SO glad the surgery is over!!!
Emmalin was in a little pain today, but slept most of it because of all the medications they have given her through her iv. Her incision looks AMAZING!! Also we have A LOT of family that has come up to support our little family and we are incredibly grateful for all of their support!!
It is now midnight and Emmalin is resting very peacefully! So far she has had a wonderful night! She has a little bit of swelling in her face and we think that part will get a little worse tomorrow. I have been told that tomorrow and tomorrow night could be pretty hard for her, but I guess we will just have to wait and see. I do know that tomorrow Emmalin will have a follow-up MRI at 8:30am. We have been told that they do this follow-up MRI to make sure that they "got the whole thing completely cut" and to confirm if she has or has not a stroke. We will then see our neurosurgeon at some point in the afternoon. He will of course see how Emmalin is doing and then give us the results of the MRI. Jarrad and I have ABSOLUTELY NO REASON to believe that Emmalin has had a stroke, but they have to do the MRI because it is protocol.
I need to get some sleep tonight, so this is all for now. God is AMAZING!! It is because of HIM and only because of HIM that we were able to make it through today!!
Emmalin was in a little pain today, but slept most of it because of all the medications they have given her through her iv. Her incision looks AMAZING!! Also we have A LOT of family that has come up to support our little family and we are incredibly grateful for all of their support!!
It is now midnight and Emmalin is resting very peacefully! So far she has had a wonderful night! She has a little bit of swelling in her face and we think that part will get a little worse tomorrow. I have been told that tomorrow and tomorrow night could be pretty hard for her, but I guess we will just have to wait and see. I do know that tomorrow Emmalin will have a follow-up MRI at 8:30am. We have been told that they do this follow-up MRI to make sure that they "got the whole thing completely cut" and to confirm if she has or has not a stroke. We will then see our neurosurgeon at some point in the afternoon. He will of course see how Emmalin is doing and then give us the results of the MRI. Jarrad and I have ABSOLUTELY NO REASON to believe that Emmalin has had a stroke, but they have to do the MRI because it is protocol.
I need to get some sleep tonight, so this is all for now. God is AMAZING!! It is because of HIM and only because of HIM that we were able to make it through today!!
Sunday, December 11, 2011
Hard Couple of Days With Seizures
This weekend has been great having my mom and sister here, but Emmalin has had a couple of REALLY tough (at least tough for us) seizure days (really afternoon/eveningish) the past couple of days. I think she had around 6 or 7 "hard ones" within 11 hours yesterday and she had around 4 hard "ones" the day before that (right now, that is a lot for Emmalin). And to top it all off, Emmalin started a "new" seizure type last night. Unfortunately that happens with CDKL5 (new seizure types will just show up randomly). I was hoping not to have to change any medications around until after the intensive was over, but I don't think that's possible now. I will definitely be calling Dr. Weisenberg on Monday and figuring out what we need to increase next....sigh. I HATE SEIZURES!!!
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