We are home again. It's been a week since Sophie's surgery and so far we've seen no seizures. This has been the ultimate goal so we're hoping it lasts! She's still on all the same medication and will be for several months before they try to wean her off of some or all of them. I'll find out more about that at her neurologist follow up on Tuesday. She's recovering well...still a little off with eating and sleeping, but improving each day. The most frustrating thing she's doing is that her naps rarely last longer than 45 minutes (on the dot!) but as a mom of three I know that this frustration is a normal baby thing and has nothing to do with all the medical struggles we've been through! While Kayla and Madelyn were better nappers at this age, they both went through phases of this at other ages. I am trying to get Sophie on a more regular routine with eating and sleeping, but with her it seems a little harder since we are on the go more and she just isn't as consistent with things. She is still recovering though and I have to remember that. Overall, she is pretty much back to her usual self and is such a sweet, calm baby. It's hard to believe she is already 3 months old and at the same time it seems like we've been doing all this for so much longer!
Kayla was back in school this week and we had some extra time with just her since Madelyn has been with Mike's parents all week. We decided to leave her there for awhile longer so we could ease ourselves into life back at home while Sophie is recovering. It's been so quiet around here without her! She'll be back today and our whole family will be at home once again. We're hoping that the coming months will be much calmer than the past three months now that the surgery is behind us. There are still no guarantees regarding seizures, but we are hopeful. God has led us this far on our path with Sophie and we have full confidence that He will continue to show us the way. It may not be the path we would like, but it is His perfect plan for her and us that we must trust. I have struggled with this all along, but remain steadfast in my faith. It hasn't been easy, but it certainly would be harder without relying on Him to hold us up during difficult times.
I am doing better. The anxiety medicine has helped a lot and the changes we've made to our daily routine around the house has made life much easier for all of us. I look forward to being at home long-term without the looming of a stay at Children's in the future. With the holidays approaching we are very thankful for so many blessings in our lives, especially all the family and friends that have been praying for us and supporting us. We can't thank you all enough.
Saturday, October 30, 2010
Friday, October 22, 2010
Surgery Update
Sophie is out of surgery and resting comfortably in the PICU until tomorrow. The surgery went well and the surgeon was able to remove the tuber that seemed to be causing the seizures and some surrounding tissue. Once it was removed they didn't see any more abnormal activity in that area. We are hopeful that she won't be having seizures as a result, but that will take time to find out. They have her on two additional seizure medications for the next several days just to make sure things in her brain are calm while she's healing. We were able to see her and she was moving around and pretty fussy. They are giving her Tylenol for pain and will also give her a small amount of Morphine if it seems necessary. Tomorrow she will have a ct scan to make sure there isn't any hemorraging or any other issues and if all looks good she'll be moved from the PICU to a regular room. The surgeon thinks that she could be discharged as early as Monday, but we'll see.
I've been strangely calm today. I kept telling Mike how I just didn't feel anything...nervous, scared, emotional...nothing. He said that's what it's like to be calm and I agreed that he was right. We had full confidence in her doctors, especially her neurosurgeon who we have the utmost respect for. He has been an amazing resource and support during this difficult process. We spent some time with her and are now back at Mike's parents house to rest. It's been a long day getting up at 4am and a lot of waiting. I'll call for updates tonight and we'll go back tomorrow morning to spend the day with her. She needs her rest and so do we. I'm still trying to get over this cold I have. Hopefully I'll be feeling better tomorrow.
Thank you for your prayers and ongoing support. God continues to guide us through this time and we are so grateful for the people He has put in our lives to love and support our family.
I've been strangely calm today. I kept telling Mike how I just didn't feel anything...nervous, scared, emotional...nothing. He said that's what it's like to be calm and I agreed that he was right. We had full confidence in her doctors, especially her neurosurgeon who we have the utmost respect for. He has been an amazing resource and support during this difficult process. We spent some time with her and are now back at Mike's parents house to rest. It's been a long day getting up at 4am and a lot of waiting. I'll call for updates tonight and we'll go back tomorrow morning to spend the day with her. She needs her rest and so do we. I'm still trying to get over this cold I have. Hopefully I'll be feeling better tomorrow.
Thank you for your prayers and ongoing support. God continues to guide us through this time and we are so grateful for the people He has put in our lives to love and support our family.
Tuesday, October 12, 2010
Sophie's Surgery
We have scheduled the date for Sophie's brain surgery. It will be on Friday, October 22nd. It is overwhelming that this is happening so quickly, but we know it is best for her. We are so hopeful that it will be life-changing for Sophie and for our family. The ultimate goal is that she will be seizure-free, but it would even be good if she had to stay on seizure medication that controlled them completely. The outcome remains to be seen and since there are six tubers on her brain and they are only removing the largest one that the seizures seem to be coming from, there are no guarantees for the future. But, it's the best thing we can do for her right now. Kayla and Madelyn will be spending a long weekend with their cousins in PA and then Kayla will come home to go back to school while my mom stays at our house to get her on and off the bus and take care of her. Madelyn will continue to stay with Mike's parents until we come home with Sophie. I am working on seeing if Mike and I can stay at the Ronald McDonald House near Children's so we don't have to drive in and out of DC each day. There have been many offers of a place to stay for us, but I am going to try looking into this first as we want to be near Sophie, but have a place to get away from the hospital when we feel the need to.
Sophie is doing well, despite her seizures. She is almost 11 weeks old, weighs over 12 lbs and has started sleeping through the night most nights! That has been a blessing even though I have to give her medicine around 4:30am...she sleeps through it and I go back to sleep. I have been having a hard time with anxiety lately though and it's been hard on all of us. I think it's been building over the past weeks, but for some reason scheduling her surgery pushed it over the edge. I spent the weekend in pretty bad shape, but have also started on anxiety medication that should kick in in the next couple weeks. Mike and I have talked about some ways we can change our daily routine, especially in the evenings, and I think it will help things a lot. I've also asked our next door neighbor's daughter to start picking Kayla up at the bus stop which has alleviated some stress for me since sometimes Sophie is sleeping or Madelyn is grumpy after getting up from her nap. It's hard for me to ask for help, but I'm getting better at it. I have to remember that yes, I can do all these things I'm asking help with, but it will make this season of life easier if I let those who want to help do so. Thank you to everyone who is doing so much to make our lives easier.
Please keep us in your prayers in the days leading up to Sophie's surgery. Madelyn has been acting out more lately which I think is in part due to her sensing my anxiety. Kayla seems not as affected, I think because she is at school most of the day. It's hard knowing that my mood and feelings are affecting my children, but given the situation I have had to accept it and move on making the best choices we can for them.
In my devotional over the weekend I came upon this Scripture which made no sense to me at the time, actually frustrated me reading it that day. Today it makes so much sense as I've seen this anxiety bring me to my knees feeling weak, but forcing me to find strength in the things I can control in my life!
"...for when I am weak, then I am strong." -2 Corinthians 12:10
Sophie is doing well, despite her seizures. She is almost 11 weeks old, weighs over 12 lbs and has started sleeping through the night most nights! That has been a blessing even though I have to give her medicine around 4:30am...she sleeps through it and I go back to sleep. I have been having a hard time with anxiety lately though and it's been hard on all of us. I think it's been building over the past weeks, but for some reason scheduling her surgery pushed it over the edge. I spent the weekend in pretty bad shape, but have also started on anxiety medication that should kick in in the next couple weeks. Mike and I have talked about some ways we can change our daily routine, especially in the evenings, and I think it will help things a lot. I've also asked our next door neighbor's daughter to start picking Kayla up at the bus stop which has alleviated some stress for me since sometimes Sophie is sleeping or Madelyn is grumpy after getting up from her nap. It's hard for me to ask for help, but I'm getting better at it. I have to remember that yes, I can do all these things I'm asking help with, but it will make this season of life easier if I let those who want to help do so. Thank you to everyone who is doing so much to make our lives easier.
Please keep us in your prayers in the days leading up to Sophie's surgery. Madelyn has been acting out more lately which I think is in part due to her sensing my anxiety. Kayla seems not as affected, I think because she is at school most of the day. It's hard knowing that my mood and feelings are affecting my children, but given the situation I have had to accept it and move on making the best choices we can for them.
In my devotional over the weekend I came upon this Scripture which made no sense to me at the time, actually frustrated me reading it that day. Today it makes so much sense as I've seen this anxiety bring me to my knees feeling weak, but forcing me to find strength in the things I can control in my life!
"...for when I am weak, then I am strong." -2 Corinthians 12:10
Saturday, October 2, 2010
Why Me? Why Not?
I have been feeling sorry for myself lately. I have days that are good and days where I just break down from all the mental stress. Day-to-day things have been okay. It's still overwhelming to me at times adjusting to three kids and the new routines we've established in the past month with the older two starting school. Everyone has settled into their routines well it seems, but me. I go through the motions each day, but still feel uneasy a lot more than I would like. We don't have much to update about Sophie's upcoming surgery. She's still having daily seizures, small ones, but her neurologist hasn't changed her medication lately since we are moving toward surgery. We had a meeting with the neurosurgeon on Wednesday and he gave us the information we needed regarding the actual surgery and answered a lot of our questions. He was going to get in touch with the neurologist and discuss what would happen next and then we were supposed to hear from the neurologist. I didn't hear from him by the end of the week so I'm hoping to get in touch with him on Monday. It seems like we'll be scheduling a date for surgery sometime in October, but nothing is set yet. Will keep everyone updated as we know more.
So back to me. This blog has become very therapeutic for me and today feels like a good time to use it for just that. It's interesting how a situation like this affects different people in different ways. I feel like the part that is the hardest for me is being completely out of control of certain things. There is so much of our life with Sophie that is normal that I can easily forget that she has TS and has the problems that she does. Then she'll have a seizure and it brings me back to reality. Or I'll go a whole day and seizures won't bother me and the feelings will hit me as I'm dosing out four different medications to give her before bedtime. I have moments that I just want it to all go away. It makes me angry. It makes me sad. It makes me question, "Why me, God? Why us? Why Sophie?" And every time the answer that comes to mind is, "Why not?" In talking about this together lately, Mike has made the point that really we have never had to go through something really difficult like this in our married life or otherwise. He's right. We've been so blessed. And we still are blessed to be going through this time with the amount of love and support that we have. Some people don't have the amazing family that we do who will drop everything to be wherever we need them to be and do whatever we need them to do. Some people don't have great health insurance like we do. Some people don't have the strong marriage that we do and wouldn't be able to survive this together. Some people don't have our faith and have nothing to hold on to in the most difficult moments. We have so much in the midst of a situation that is so hard. So why not us? It helps put things into perspective.
I've been reminding myself that I don't have to feel comfortable with it all yet. Or even feel okay with everything. Sophie is 2 months old now. It's only been 2 months that we've been learning about TS, how to care for her, facing brain surgery for her, and trying to figure out how to do all this while leading a day-to-day life with our family. I feel like I should have it all together by now. This is where the lack of control bothers me so much. So I grasp on to my faith and pull out my journal of Scriptures and quotes that people have sent me or that I have found on my own. And I find peace. I don't know how people go through things like this without God. Even when I'm angry and having words with Him (aloud at times!) it feels like I'm not alone. I know that I'm not alone. Yet, sometimes I feel like the only one that has this situation in my face 24 hours a day and it becomes all-consuming. So I continue to pray and go through the motions each day knowing that one day things will not feel so out of control. We have high hopes that Sophie's surgery will be life changing for her and all of us. There are no guarantees and the issues she faces with her diagnosis will remain to be seen. But, there is hope in that. I am learning the art of true patience. Sophie will show us what she can do and who she will be. We will learn to care for whatever needs she has and love her unconditionally. It will get easier in time.
In the past I have prayed for my faith to be strengthened as I built a stronger relationship with God. I prayed for Him to use me for His purposes, to be able to do things for His glory. Today it hit me that my prayers have been answered. Not exactly in the way that I had in mind, but in the way that He has planned for me and others. I have been able to witness my faith to others during this time. I'm growing closer to Him each day in just the conversation that He and I have amidst my ups and downs. I truly feel that He is using me as a vessel and that one day I will look back and it will make more sense in retrospect.
If you're still reading this I am thankful. Each and every one of you are such a blessing in my life. We are not the only family going through a difficult time. People go through things that are much harder. So I need to stop feeling sorry for myself. Stop asking, "Why me?" and start looking toward the day that I will no longer have to go through the motions of day-to-day life and really feel like I'm living again.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." -Jeremiah 29:11
So back to me. This blog has become very therapeutic for me and today feels like a good time to use it for just that. It's interesting how a situation like this affects different people in different ways. I feel like the part that is the hardest for me is being completely out of control of certain things. There is so much of our life with Sophie that is normal that I can easily forget that she has TS and has the problems that she does. Then she'll have a seizure and it brings me back to reality. Or I'll go a whole day and seizures won't bother me and the feelings will hit me as I'm dosing out four different medications to give her before bedtime. I have moments that I just want it to all go away. It makes me angry. It makes me sad. It makes me question, "Why me, God? Why us? Why Sophie?" And every time the answer that comes to mind is, "Why not?" In talking about this together lately, Mike has made the point that really we have never had to go through something really difficult like this in our married life or otherwise. He's right. We've been so blessed. And we still are blessed to be going through this time with the amount of love and support that we have. Some people don't have the amazing family that we do who will drop everything to be wherever we need them to be and do whatever we need them to do. Some people don't have great health insurance like we do. Some people don't have the strong marriage that we do and wouldn't be able to survive this together. Some people don't have our faith and have nothing to hold on to in the most difficult moments. We have so much in the midst of a situation that is so hard. So why not us? It helps put things into perspective.
I've been reminding myself that I don't have to feel comfortable with it all yet. Or even feel okay with everything. Sophie is 2 months old now. It's only been 2 months that we've been learning about TS, how to care for her, facing brain surgery for her, and trying to figure out how to do all this while leading a day-to-day life with our family. I feel like I should have it all together by now. This is where the lack of control bothers me so much. So I grasp on to my faith and pull out my journal of Scriptures and quotes that people have sent me or that I have found on my own. And I find peace. I don't know how people go through things like this without God. Even when I'm angry and having words with Him (aloud at times!) it feels like I'm not alone. I know that I'm not alone. Yet, sometimes I feel like the only one that has this situation in my face 24 hours a day and it becomes all-consuming. So I continue to pray and go through the motions each day knowing that one day things will not feel so out of control. We have high hopes that Sophie's surgery will be life changing for her and all of us. There are no guarantees and the issues she faces with her diagnosis will remain to be seen. But, there is hope in that. I am learning the art of true patience. Sophie will show us what she can do and who she will be. We will learn to care for whatever needs she has and love her unconditionally. It will get easier in time.
In the past I have prayed for my faith to be strengthened as I built a stronger relationship with God. I prayed for Him to use me for His purposes, to be able to do things for His glory. Today it hit me that my prayers have been answered. Not exactly in the way that I had in mind, but in the way that He has planned for me and others. I have been able to witness my faith to others during this time. I'm growing closer to Him each day in just the conversation that He and I have amidst my ups and downs. I truly feel that He is using me as a vessel and that one day I will look back and it will make more sense in retrospect.
If you're still reading this I am thankful. Each and every one of you are such a blessing in my life. We are not the only family going through a difficult time. People go through things that are much harder. So I need to stop feeling sorry for myself. Stop asking, "Why me?" and start looking toward the day that I will no longer have to go through the motions of day-to-day life and really feel like I'm living again.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." -Jeremiah 29:11
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