This is something I normally would post on Caringbridge, but since we are trying to switch over to ALL blog I figured I needed to start somewhere and do a post on here that would be the following:
When we went to see neurology for Zoie mid January, we knew we were headed into that appt to talk about doing a possible med switch. We focused more on talking about sleep issues and the side effects that this new med may have, and focused little on remembering what it's like to mess around with seiure medication. We could be those parents who say "no, leave her meds alone. She is only having a seizure every other week." But, that's not good enough for Derik and I, or for Zoie's doctors. I wouldn't feel like a good mom if I settled on her having two or three seizures a month when I know we can do better, and I know Derik agrees.
Usually doctors don't allow kids to be on more than three seizure meds at one time. Obviously you want as little meds going into a toddler as possible. With Zoie already being on three, if we wanted to add another, it meant pulling her off of one to do that. With that said, it's all trial and error on which med to pull her off of and what to add. The what to add is easier because there are only so many to choose from, but the what to pull her off of is harder. Or, I should say, it's the combo of both.
We decided to pull Zoie off the very first med they started her on when she was 2.5 months old because we had to keep adding meds because that one wasn't working. With her now being completely weened off of it, Derik and I are wondering if it was helping because her seizures have been happening very often and quite long. We just added the new med into the mix last night for the first time so hopefully it picks up what we took her off of plus some! Unfortunatly it's no science. Each kid has a different brain and it does take a lot of patience, prayers, and experimenting. There is really no other way to do it.
The last two weeks have been tough, with lots more seizures than we were used to. It takes me back to a dark place when Zoie was six months old and had them everyday for weeks straight. No, it's not quite that bad right now, but they are a lot longer than they were back then. I had to stay home for weeks because I was so scared to go anywhere and Zoie have a seizure in front of people. I am kinda facing that fear again, not so bad....but it's just a lot easier in our own home.
With all of that said, yes Zoie is fine, we call paramedics if we need to, and we know how to deal. But, we are only so strong and it's really tough watching over and over. I think it helps a ton Derik, Zoie and I all have amazing family and friends who support us. We have God and we know how to pray. We are usually so positive, but I find myself getting emotional at times thinking, "this too shal pass." We sometimes must take three steps forward and one step back in order to accomplish what we want.
Derik and I pray when Zoie has a seizure, but I think it would help if we could have lots of prayers during this one step back time. I know everyone has a lot going on, as do we, but I have seen prayers work miracles and Zoie could use some along with Derik and I to have patience and continue to stay strong for Zoie.
I don't like asking for help, but I will ask for prayers <3
Here's to hoping the next few weeks go quick, and that this new med works wonders and controls Zoie's seizures quickly.
If anyone has any good verses we could think of in times like this please leave them in the comments.
Hope everyone has a blessed weekend!
When we went to see neurology for Zoie mid January, we knew we were headed into that appt to talk about doing a possible med switch. We focused more on talking about sleep issues and the side effects that this new med may have, and focused little on remembering what it's like to mess around with seiure medication. We could be those parents who say "no, leave her meds alone. She is only having a seizure every other week." But, that's not good enough for Derik and I, or for Zoie's doctors. I wouldn't feel like a good mom if I settled on her having two or three seizures a month when I know we can do better, and I know Derik agrees.
Usually doctors don't allow kids to be on more than three seizure meds at one time. Obviously you want as little meds going into a toddler as possible. With Zoie already being on three, if we wanted to add another, it meant pulling her off of one to do that. With that said, it's all trial and error on which med to pull her off of and what to add. The what to add is easier because there are only so many to choose from, but the what to pull her off of is harder. Or, I should say, it's the combo of both.
We decided to pull Zoie off the very first med they started her on when she was 2.5 months old because we had to keep adding meds because that one wasn't working. With her now being completely weened off of it, Derik and I are wondering if it was helping because her seizures have been happening very often and quite long. We just added the new med into the mix last night for the first time so hopefully it picks up what we took her off of plus some! Unfortunatly it's no science. Each kid has a different brain and it does take a lot of patience, prayers, and experimenting. There is really no other way to do it.
The last two weeks have been tough, with lots more seizures than we were used to. It takes me back to a dark place when Zoie was six months old and had them everyday for weeks straight. No, it's not quite that bad right now, but they are a lot longer than they were back then. I had to stay home for weeks because I was so scared to go anywhere and Zoie have a seizure in front of people. I am kinda facing that fear again, not so bad....but it's just a lot easier in our own home.
With all of that said, yes Zoie is fine, we call paramedics if we need to, and we know how to deal. But, we are only so strong and it's really tough watching over and over. I think it helps a ton Derik, Zoie and I all have amazing family and friends who support us. We have God and we know how to pray. We are usually so positive, but I find myself getting emotional at times thinking, "this too shal pass." We sometimes must take three steps forward and one step back in order to accomplish what we want.
Derik and I pray when Zoie has a seizure, but I think it would help if we could have lots of prayers during this one step back time. I know everyone has a lot going on, as do we, but I have seen prayers work miracles and Zoie could use some along with Derik and I to have patience and continue to stay strong for Zoie.
I don't like asking for help, but I will ask for prayers <3
Here's to hoping the next few weeks go quick, and that this new med works wonders and controls Zoie's seizures quickly.
If anyone has any good verses we could think of in times like this please leave them in the comments.
Hope everyone has a blessed weekend!
Ephesians 3:20 Now to he who is able to do immeasurably above all that we ask or think, according to the power that works within us
ReplyDeleteMatthew 18:18 "Verily I say unto you, whatsoever you shall bind on earth shall be bound in heaven: and whatsoever you shall loose on earth shall be loosed in heaven." NOTE - The word "bind" means to forbid, the word "loose" means to let go or to allow to go free. Do not allow sickness, pain or disease run free in your body, bind it or forbid it to stay there any longer because of your rights as a believer.. Put your foot down and command it to leave in the Name of Jesus!!!
ReplyDeleteThe LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold.
ReplyDeletePsalm 18:2
These verses got me through last year when I was being treated for cancer and trying to enjoy being a new mommy. Very scary and crazy time but God gave me such incredible peace!!!! I can't imagine going through what you have to endure everyday. You are strong! God is carrying you through. Blessings to your sweet family!!! <3
ReplyDeletePhilippians 4:6-8
6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.