There are a whole hell of a lot of things that I have learned since becoming a mother.
One of those things is that I am glad that I did not have expectations about what my child would be like. This turned out to be a good thing since I never would have guessed that my child would have Epilepsy.
Although I am almost always able to put things in perspective and appreciate the fact that Shrimpy's Epilepsy isn't severe, is well managed, and hasn't caused any delays as far as we can tell, sometimes I don't want to be reasonable about it.
Sometimes I wonder what it would have been like to have been typical first-time parents- freaking out about little things and having sleep as the biggest worry. I also dream about what it would have been like to have had two weeks off with Broom and Shrimpy, getting to know one another and letting my body recover from birth.
Instead I was on my feet within the hospital and lost a lot of blood, healed badly, had edema on my feet and hands, a bout with depression, PTSD and nightmares. Instead, I kept my baby within eyesight for longer than I care to admit- first in person, then with a video baby monitor. My biggest worry was that I would miss a seizure, she wouldn't breathe, and she would get brain damage or die. I had a lot of anxiety about all of those things.
Those are hard words to write. But I learned to "feel" her moods and try and just let the risk be. Will it be there for a long, long time. Will it ever go away? I really don't know.
But I also know that there are mothers out there who would be happy to "just" have those worries.
I know I am lucky, and I know that I am strong, as is Shrimpy.
Somehow, through all of that, we managed to breastfeed for 13 months.
Somehow, we managed to not let Epilepsy rule our life.
Do I wonder what life would be like without a bed monitor and video monitor for my Shrimpy? Do I wonder if the medicine made her personality different? Sure.
Luckily, most of the time, I don't wonder if we are doing the right thing because it just feels right.
These things make our family feel good:
- We speak openly about her Epilepsy so that she knows there is nothing to be ashamed of-we are even working on her learning on how to give herself her medicine
- We don't ask for her to be treated differently- but we do avoid her triggers (so, sleep is holy and disco balls are not our friends)
- We don't watch TV with her- screen time is limited to an occasional Sesame Street song on a cell phone
- We keep to a schedule that we try not to make too busy and think twice about when we decide to act outside of it
So, on today, like every other day, I will let myself mourn the life I didn't have while concentrating on the awesome life I do have- with an amazing wife and wonderful child who never ceases to amaze me.
Shrimpy may be special needs in her own way- but I have come to the conclusion that each child has their own special needs and each life has its "normal".
Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
Friday, October 16, 2015
Tuesday, July 21, 2015
Oh, hey.
So...um...awkward silence?
I would apologize for writing, but the truth is, I am not sorry. Turns out I needed the time to come more fully into my role as a mother and enjoy our little family oasis before starting work again in February 2015.
Now, I feel like I can write again- but where to start?
With the little one, of course!
Luckily, we are all doing well. Shrimpy still has her undefined form of Epilepsy but had her last petit mal in October of 2014 and her last grand mal in April of 2014. She has myoclonic seizures at times, but they haven't influenced her in any way other than being a pain since she gets them in that in-between falling asleep phase (imagine a whole body jerk- like those that everyone has at some times, but with 50 in 30 minutes- that is how we knew they were epileptic). She doesn't seem to have any other type, and we have her down to 2 medications and want to see if we can get her to 1 medication this year if possible.
Her development is right on track if not a little ahead, which we are over the moon about. Her head circumference is a little on the small side, but it isn't noticeable. There could be a connection between that and her Epilepsy, but it is hard to tell. She has been walking since the end of February, which is also when she self-weaned (probably because I started work at the beginning of February and my daughter doesn't like to expend too much energy if she doesn't have to). Her vocabulary has been growing in leaps and bounds in both languages and she has been to the US twice now. She is sweet and funny and stubborn and curious and I love her so. We got our first choice for her daycare and she runs in without saying goodbye. It is awesome and pulls on the heartstrings a little too. She runs towards us giggling when we pick her up though, which totally rocks.
What else?
Broom and I are great. Our 5 year wedding anniversary is in September, which is just crazy. Life gets hectic every once and awhile and we have to remember to take time for one another- but I think many couples have that. We moved in April due to mold in our old apartment and our new one is definitely much bigger and nicer- two floors and lots of space for when we decide to end Shrimpy's status as an only child. That project should be starting soon- and the plan is for Broom to carry! We found a naturally-oriented gyno who I really like, and I hope she feels the same way. The gyno has agreed to help us all that she can in our future child making endeavors.
Going back to work has been anti-climactic. My job was adjusted for the woman who replaced me and since she was less qualified than me, a lot of tasks are gone and I am quite honestly, bored (I am aware that that sounds like I am putting myself on a pedestal, but it is very much a different job). I am working on getting them back and also applying when new jobs come up. We will see where it takes me. All in all, the transition has been ok though. Do I wish that my job was stimulating and fulfilling so that I didn't feel like the cells in my body are turning into the same material as my outdated desk? Sure. But I know I am damn lucky to have a job, and it makes a lot of things possible for us which I am grateful for.
I would apologize for writing, but the truth is, I am not sorry. Turns out I needed the time to come more fully into my role as a mother and enjoy our little family oasis before starting work again in February 2015.
Now, I feel like I can write again- but where to start?
With the little one, of course!
Luckily, we are all doing well. Shrimpy still has her undefined form of Epilepsy but had her last petit mal in October of 2014 and her last grand mal in April of 2014. She has myoclonic seizures at times, but they haven't influenced her in any way other than being a pain since she gets them in that in-between falling asleep phase (imagine a whole body jerk- like those that everyone has at some times, but with 50 in 30 minutes- that is how we knew they were epileptic). She doesn't seem to have any other type, and we have her down to 2 medications and want to see if we can get her to 1 medication this year if possible.
Her development is right on track if not a little ahead, which we are over the moon about. Her head circumference is a little on the small side, but it isn't noticeable. There could be a connection between that and her Epilepsy, but it is hard to tell. She has been walking since the end of February, which is also when she self-weaned (probably because I started work at the beginning of February and my daughter doesn't like to expend too much energy if she doesn't have to). Her vocabulary has been growing in leaps and bounds in both languages and she has been to the US twice now. She is sweet and funny and stubborn and curious and I love her so. We got our first choice for her daycare and she runs in without saying goodbye. It is awesome and pulls on the heartstrings a little too. She runs towards us giggling when we pick her up though, which totally rocks.
What else?
Broom and I are great. Our 5 year wedding anniversary is in September, which is just crazy. Life gets hectic every once and awhile and we have to remember to take time for one another- but I think many couples have that. We moved in April due to mold in our old apartment and our new one is definitely much bigger and nicer- two floors and lots of space for when we decide to end Shrimpy's status as an only child. That project should be starting soon- and the plan is for Broom to carry! We found a naturally-oriented gyno who I really like, and I hope she feels the same way. The gyno has agreed to help us all that she can in our future child making endeavors.
Going back to work has been anti-climactic. My job was adjusted for the woman who replaced me and since she was less qualified than me, a lot of tasks are gone and I am quite honestly, bored (I am aware that that sounds like I am putting myself on a pedestal, but it is very much a different job). I am working on getting them back and also applying when new jobs come up. We will see where it takes me. All in all, the transition has been ok though. Do I wish that my job was stimulating and fulfilling so that I didn't feel like the cells in my body are turning into the same material as my outdated desk? Sure. But I know I am damn lucky to have a job, and it makes a lot of things possible for us which I am grateful for.
Thursday, July 24, 2014
A pat on the back
As you can see, my resolution to blog more frequently is more easily said than done.... but I am doing my best to keep all guilty feelings in check- which, with a Catholic school upbringing nicht immer einfach ist.
However, given our past with Shrimpy, I think getting caught up in day-to-day things is something that I can really be thankful for, and I have really been enjoying the small stuff.
As of this writing, she has been seizure free for 3 months and 8 days. Every day without is truly a gift. We have slowly been reducing one of her meds since 3 is a lot, and (**knocks on an entire forest**) it is going well so far. I am still processing the trauma that we have been through, but think that it will take a long while. Perhaps I will seek out a therapist, but I'm not sure yet. My nightmares have gotten better, and I can sometimes forget that we have the threat of seizures breathing down our necks and am determined to have us all live as normally as possible.
Since my last post post concentrated a lot on the hard realities that we have been through, I am going to brag a bit, and list the things that make me proud at the moment because I can:
- Shrimpy and I exclusively breast fed for 6 months (despite 2 illness periods where she was too weak to drink)! In fact, we have somehow managed to have no major difficulties other than the times she was ill. I feel really lucky that our breastfeeding relationship has been so solid. On her half birthday, we gave her sweet potato to try out (baby led weaning). She isn't quite ready, but we keep practicing for when she is ready.
- We made the family decision to try having her sleep in her own room since all 3 of us were no longer sleeping well, and since then, we have all slept great!
- Shrimpy has a slightly smaller than normal head circumference, but everything else is normal. She has more than doubled her birth weight and has met all of her developmental milestones. She turned over in both directions in May and did it a few times afterwards, but has since been distracted with other things- like her feet!
- The few trips we have taken as a family have been great- with very little fussiness and no trouble sleeping elsewhere. Yay!
- We got a spot in our first choice for daycare- one right around the corner with phenomenal opening times meaning that I can work 40 hours if I so choose and don't have to miss out on too many meetings, even though I will surely find a way around as many as possible. We spoke with the manager there and she has already had good experiences with other children with epilepsy and even double checked with her staff to ensure that there were no prejudices against families like ours. Check and check!
My American brain can still hardly believe that I have been off work for so long and that I don't have to go back until February. With appointments, playgroups, meeting up with friends, and everything else that normal life and keeping up a household entails, time has really been flying by.
I truly cherish being able to rock my baby to sleep and nurse her whenever she needs it. Playtime and nap time and yes, I can even appreciate when she throws a tantrum because she now hates taking her medicine- because she is healthy enough to tantrum and we now know that her being upset probably isn't a trigger.
We have even found a babysitter that we have gotten to know gradually and had our first date night since my mom was here. It was a nice, brief time out for the first time and good for us.
All in all, it isn't easy living with the "what if" in the back of my head all the time, but I refuse to let Epilepsy scare me from having the most normal life possible for me and my family. Shrimpy deserves that, and so do we.
However, given our past with Shrimpy, I think getting caught up in day-to-day things is something that I can really be thankful for, and I have really been enjoying the small stuff.
As of this writing, she has been seizure free for 3 months and 8 days. Every day without is truly a gift. We have slowly been reducing one of her meds since 3 is a lot, and (**knocks on an entire forest**) it is going well so far. I am still processing the trauma that we have been through, but think that it will take a long while. Perhaps I will seek out a therapist, but I'm not sure yet. My nightmares have gotten better, and I can sometimes forget that we have the threat of seizures breathing down our necks and am determined to have us all live as normally as possible.
Since my last post post concentrated a lot on the hard realities that we have been through, I am going to brag a bit, and list the things that make me proud at the moment because I can:
- Shrimpy and I exclusively breast fed for 6 months (despite 2 illness periods where she was too weak to drink)! In fact, we have somehow managed to have no major difficulties other than the times she was ill. I feel really lucky that our breastfeeding relationship has been so solid. On her half birthday, we gave her sweet potato to try out (baby led weaning). She isn't quite ready, but we keep practicing for when she is ready.
- We made the family decision to try having her sleep in her own room since all 3 of us were no longer sleeping well, and since then, we have all slept great!
- Shrimpy has a slightly smaller than normal head circumference, but everything else is normal. She has more than doubled her birth weight and has met all of her developmental milestones. She turned over in both directions in May and did it a few times afterwards, but has since been distracted with other things- like her feet!
- The few trips we have taken as a family have been great- with very little fussiness and no trouble sleeping elsewhere. Yay!
- We got a spot in our first choice for daycare- one right around the corner with phenomenal opening times meaning that I can work 40 hours if I so choose and don't have to miss out on too many meetings, even though I will surely find a way around as many as possible. We spoke with the manager there and she has already had good experiences with other children with epilepsy and even double checked with her staff to ensure that there were no prejudices against families like ours. Check and check!
My American brain can still hardly believe that I have been off work for so long and that I don't have to go back until February. With appointments, playgroups, meeting up with friends, and everything else that normal life and keeping up a household entails, time has really been flying by.
I truly cherish being able to rock my baby to sleep and nurse her whenever she needs it. Playtime and nap time and yes, I can even appreciate when she throws a tantrum because she now hates taking her medicine- because she is healthy enough to tantrum and we now know that her being upset probably isn't a trigger.
We have even found a babysitter that we have gotten to know gradually and had our first date night since my mom was here. It was a nice, brief time out for the first time and good for us.
All in all, it isn't easy living with the "what if" in the back of my head all the time, but I refuse to let Epilepsy scare me from having the most normal life possible for me and my family. Shrimpy deserves that, and so do we.
Friday, June 6, 2014
An undefined form of Epilepsy
First, I'd like to apologize for the radio silence. As you can tell from the title, a lot has been going on. This is bound to be a long post, although it surely won't cover everything....I've been writing and re-writing this for weeks, so we will see what direction my writing takes me and then I would like to keep up with my posting.
Please be warned- I will be talking about what Epilepsy can look like, and if you are sensitive to hearing about children being really sick, please avoid the area surrounded in *****. It is important to me to "tell you like it is", but it isn't easy to write, and for most, it won't be easy to read.
On April 4th, not long after my last post, Shrimpy's seizures came back. Her EEG the week before had been completely normal, so we decided, together with her doctors, to start (very gradually) weaning her off of the barbiturate. The first seizure was "just" focal- so just her face and mouth. I heard the sound her mouth makes when she seizes- a sort of clicking sound with her tongue, and I was instantly ripped out of my sleep. I took her out of her bassinet right next to the bed and held her and talked to her, while filming it for the doctors. Since it was a focal seizure, she was herself again afterwards- so I gave her her medicine as planned and tried calling the doctor. Unfortunately, it was busy, and while I was trying to nurse her and call them, the had a generalized seizure- so her whole body, including her lungs. As I watched her lips turning blue, I figured "fuck it" and called German 911. While I spoke to the operator, it stopped, but I had them come anyway in order to drive us to the hospital.
**********************************************************************************
In the next two days, she had 7 seizures. They returned her medicine to its previous dosage, and for the next 4 days, she had no seizures and was able to nurse again relatively quickly. We went home and had one wonderful night as a family. The next morning, she had another, and we went back to the hospital, where they told us, as long as she didn't have another, that we could continue with our weekend. We had just arrived at a meet-up for the parents and children for the participants of our birthing preparation class when she had another. In the next 4 days, she had over 40 seizures, reaching a max of 15 in 24 hours. All lasted about 2 minutes, and all led to a bad oxygen saturation level. Some doctors wanted to see what her level would drop down to before administering oxygen- but Broom and I were not having any of that and always used the oxygen- because who the hell wants to test that?!?
Her personality was gone, her muscles had no tension, she was too weak to breastfeed, and could hardly stay awake. They took blood, and her face made the crying actions, but she couldn't fucking cry! She was basically in a coma- and it took her 45 minutes to drink a bottle. It was horrible, and we began to worry if our Shrimpy would make a comeback.
**********************************************************************************
During our stay in the hospital, they completed a new round of tests, including an MRI. They discovered that the seizures begin focally and usually turn into a generalized seizure. Her heart, brain, and kidneys (she has 3- because she is cool like that), all show no signs of damage. Her metabolism tests show no signs of a disorder, and the genetic testing for benign infant seizures showed an abnormality on one of the genes, but both tested negative.
Diagnosis- undefined Epileptic seizures.
Not entirely unexpected, and it could totally be worse- but still shit in a lot of ways. But, we are dealing- and her meds are good at the moment. Currently, her last seizure was on the 17th of April. Next week, we will begin working with the doctors to gradually reduce one of her 3 meds- because 3 is a lot for a 4.5 month old.
I am scared shitless, but I know it is the right thing.
From all of this, I can tell you that I know the following without a doubt:
- Shrimpy is SO incredibly strong- she and I got our nursing back on track really quickly, and she is ahead developmentally ahead at this point- something I am super proud of.
- Broom and I are a solid unit- if anything, this has made us even stronger.
- Modern medicine, the health care system, and parental leave program in Germany enables us to have time to deal with this as a family.
- Relatively speaking, if Shrimpy "has" to have an illness, at least hers is a common one, controllable with medication. She can have a normal life, and can develop normally, too.
So, friends of the internet- I think that that is enough for now. I will try and follow up more regularly, especially since I have a lot to say on the subject of Epilepsy and everything else that is going on, so I hope that I can find time to write again soon.
Take care of yourselves!
Please be warned- I will be talking about what Epilepsy can look like, and if you are sensitive to hearing about children being really sick, please avoid the area surrounded in *****. It is important to me to "tell you like it is", but it isn't easy to write, and for most, it won't be easy to read.
On April 4th, not long after my last post, Shrimpy's seizures came back. Her EEG the week before had been completely normal, so we decided, together with her doctors, to start (very gradually) weaning her off of the barbiturate. The first seizure was "just" focal- so just her face and mouth. I heard the sound her mouth makes when she seizes- a sort of clicking sound with her tongue, and I was instantly ripped out of my sleep. I took her out of her bassinet right next to the bed and held her and talked to her, while filming it for the doctors. Since it was a focal seizure, she was herself again afterwards- so I gave her her medicine as planned and tried calling the doctor. Unfortunately, it was busy, and while I was trying to nurse her and call them, the had a generalized seizure- so her whole body, including her lungs. As I watched her lips turning blue, I figured "fuck it" and called German 911. While I spoke to the operator, it stopped, but I had them come anyway in order to drive us to the hospital.
**********************************************************************************
In the next two days, she had 7 seizures. They returned her medicine to its previous dosage, and for the next 4 days, she had no seizures and was able to nurse again relatively quickly. We went home and had one wonderful night as a family. The next morning, she had another, and we went back to the hospital, where they told us, as long as she didn't have another, that we could continue with our weekend. We had just arrived at a meet-up for the parents and children for the participants of our birthing preparation class when she had another. In the next 4 days, she had over 40 seizures, reaching a max of 15 in 24 hours. All lasted about 2 minutes, and all led to a bad oxygen saturation level. Some doctors wanted to see what her level would drop down to before administering oxygen- but Broom and I were not having any of that and always used the oxygen- because who the hell wants to test that?!?
Her personality was gone, her muscles had no tension, she was too weak to breastfeed, and could hardly stay awake. They took blood, and her face made the crying actions, but she couldn't fucking cry! She was basically in a coma- and it took her 45 minutes to drink a bottle. It was horrible, and we began to worry if our Shrimpy would make a comeback.
**********************************************************************************
During our stay in the hospital, they completed a new round of tests, including an MRI. They discovered that the seizures begin focally and usually turn into a generalized seizure. Her heart, brain, and kidneys (she has 3- because she is cool like that), all show no signs of damage. Her metabolism tests show no signs of a disorder, and the genetic testing for benign infant seizures showed an abnormality on one of the genes, but both tested negative.
Diagnosis- undefined Epileptic seizures.
Not entirely unexpected, and it could totally be worse- but still shit in a lot of ways. But, we are dealing- and her meds are good at the moment. Currently, her last seizure was on the 17th of April. Next week, we will begin working with the doctors to gradually reduce one of her 3 meds- because 3 is a lot for a 4.5 month old.
I am scared shitless, but I know it is the right thing.
From all of this, I can tell you that I know the following without a doubt:
- Shrimpy is SO incredibly strong- she and I got our nursing back on track really quickly, and she is ahead developmentally ahead at this point- something I am super proud of.
- Broom and I are a solid unit- if anything, this has made us even stronger.
- Modern medicine, the health care system, and parental leave program in Germany enables us to have time to deal with this as a family.
- Relatively speaking, if Shrimpy "has" to have an illness, at least hers is a common one, controllable with medication. She can have a normal life, and can develop normally, too.
So, friends of the internet- I think that that is enough for now. I will try and follow up more regularly, especially since I have a lot to say on the subject of Epilepsy and everything else that is going on, so I hope that I can find time to write again soon.
Take care of yourselves!
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