Hi Friends (:
Hope you all had a good Thanksgiving, ours was quiet and very good. John has worked 7 of the last 7 days so I haven't updated since our last doctors appointment... but I have all of my Christmas shopping done, so horray for that!
We had our meeting with our geneticist and Kristi the coordinator last Tuesday, and the treatment has been put off another week. I am pretty... well really bummed about it, and I feel like I have been watching Evie like a hawk these last few days nervous that if things are continued to be put off her health will decline. For now, I am going to continue to pray pray pray over her little body, and so far things seem to be going okay. She has the occasional cough, and has been throwing up occasionally but it may just be normal baby stuff. I am getting weary of waiting, but I have been praying for God's perfect timing and I have to believe that this is it.
We have to decide this week if we want Evie to have a "port" placed for blood draws. It sounds like it will be in her chest, but we are going to meet with a surgeon to talk things over before we decide. I am not overly thrilled about any foreign objects being placed for any reason, but I know I need to be open to what is best for her... and being poked numerous times for blood draws sounds pretty miserable. There are risks and benefits to both, so it's not an obvious answer. We will also be doing her baseline kidney ultrasound and skeletal x-rays this week to get her ready for next Monday. Hopefully things will fall into place this time and we will get started on the 7th, that is the plan for now.
I was thinking a lot this week about what I am thankful for, and I am thankful that God has provided me with everything I need to get through any situation, and he continues to show me that every day. I have an unconditionally loving and accepting husband, a hilarious two year old to bring me joy, a beautiful blessing who has made it 10 weeks against the odds, a family and support system that goes above and beyond, and an amazing God who wraps his arms around me through it all. The thousands of beautiful things around me are just icing on the cake.
Love you friends, sorry the update is so long overdue. Hopefully I'll have more news this week.
Lindsey
Sunday, November 29, 2009
Thursday, November 19, 2009
Wow, two months!
Happy 2 month birthday Evie Jayne!!! I love you beautiful girl.
Well the "signing, sealing, and delivering" of the contract took a little longer than expected, and is setting us back a week. We didn't meet today to do Evie's baseline visit, but are meeting next Tuesday.
The GREAT news is, as of today, everything IS signed. The drug company has signed, the IRB has approved, so we are GO!
I am slightly disappointed that we aren't starting treatment next week, but I am so pleased with the way the doctors have carefully combed through the study protocol to make sure Evie isn't in any danger. It is so much more important to me that we have carefully thought through Evie's treatment before rushing into anything, and she continues to do remarkably well, Praise God for that answered prayer!
I found an article about the study drug Evie will be starting, if you are interested you can check out: http://enobia.com/press_releases-32.html
As I was browsing the website I discovered that the first infant to try the treatment started in October 2008... barely over a year ago. I am just blown away at how blessed we are that this treatment is available for Evie. Totally... blown... away.
Lastly, my Grandma Maurstad passed away one year ago today. Just wanted to say I miss you grandma. I sent you all of my email updates during my pregnancy, I know you were rooting for us (: I love you so much, I'm sure you are playing more beautifully than ever. Wish you were here.
Love you friends (:
Well the "signing, sealing, and delivering" of the contract took a little longer than expected, and is setting us back a week. We didn't meet today to do Evie's baseline visit, but are meeting next Tuesday.
The GREAT news is, as of today, everything IS signed. The drug company has signed, the IRB has approved, so we are GO!
I am slightly disappointed that we aren't starting treatment next week, but I am so pleased with the way the doctors have carefully combed through the study protocol to make sure Evie isn't in any danger. It is so much more important to me that we have carefully thought through Evie's treatment before rushing into anything, and she continues to do remarkably well, Praise God for that answered prayer!
I found an article about the study drug Evie will be starting, if you are interested you can check out: http://enobia.com/press_releases-32.html
As I was browsing the website I discovered that the first infant to try the treatment started in October 2008... barely over a year ago. I am just blown away at how blessed we are that this treatment is available for Evie. Totally... blown... away.
Lastly, my Grandma Maurstad passed away one year ago today. Just wanted to say I miss you grandma. I sent you all of my email updates during my pregnancy, I know you were rooting for us (: I love you so much, I'm sure you are playing more beautifully than ever. Wish you were here.
Love you friends (:
Sunday, November 15, 2009
The Plans....
Hi Friends!
I spoke with Kristi, our enzyme replacement coordinator this past week, and a tentative plan for Evie's treatment has been set! Praise God!
If all documents are signed, sealed, and delivered, we will do our baseline/screening visit for Evie on Thursday. You can pray that God will grant me the mental capacity to understand all of the numbers, measurements, dates and scheduling for Evie's treatment before we sign on the dotted line. Then she will go into the hospital Monday the 23rd for her initial IV dose of medication, and we may only have to stay for 2 or 3 days if all goes well! This means home for Thanksgiving, back Friday for some labs, and we will start her injections (shots) the following Monday. She will have these 3 times a week for the next 6 months, and tests scattered throughout the weeks to monitor her results. I am bursting with gratitude for the people who have worked so hard to get this started.
On a deeper note (scary, I know!)... I have had one of those days... Looking back on how God has touched my heart in the past few weeks.
It started at women's Bible study two Thursdays ago, when we were reading about how Jesus told Peter that he, Peter, would be crucified.
Then this past week we decided to take the kids to Coco Key when John got off of work. We had to hurry and get the girls out the door because you can only get in free before 5pm! So we hurriedly drove across town only to find out that it was a "black out day" and we couldn't get in. I was so frustrated! When we left we took 72nd street to Center to head west and get something to eat. As we were driving down Center street tears started streaming down my face. I hadn't driven down that part of Center street since I was pregnant with Evie... and we had visited the cemetary on 50th and Center to get familiar with where we would lay her to rest.
Jesus had told Peter how he would die. God knew before he sent Jesus to this earth, how Jesus would die. And in a distant comparison, when I was pregnant, we were told how Evie would die.
When people ask me how we survived the last few months of our pregnancy, I can only describe it as "one day at a time." The truth is, I KNOW death is not the end of Evie's life. We went to that cemetary half a dozen times to get familiar with Evie's doorway to the place God is preparing for her. To get comfortable with the symbolic place where we could go "visit" her. Where we could sit by her grave and weep because of how much we love and miss her. Was it painful? YES. Is it hard to consider even now??? It rips my heart out. But Jesus said "Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." God has not only prepared a place for Evie, but thankfully also for me, her mom, so I can hug, talk to, and walk the streets of Heaven with her for all of eternity! I hold firm to that truth, thank you Lord!
Now that we have had Evie home for 8 weeks, I am sitting with a towel... not a kleenex... as I did so many times when I was pregnant, thinking about that time when we thought we were going to lose her. And now instead of dropping to my knees and praying for a miracle, I usually drop face down on the floor thanking God for Evie, and for the 8 weeks of joy she has brought to our lives. We will all obviously face death someday. I am so glad I can face it knowing I will be reunited with my children in Heaven, and be incredibly thankful for the time we have together now.
Our dear friend and Pastor is doing a 4 week sermon series titled "It Would Take a Miracle." After what we have experienced the past several months, I just can't wait. If you are looking to find a church, or a place to hear about God's love for you, I personally invite you to come. The series is starting in December (Dec 6th) at Brookside Church. John, Lyla, I, and our BEAUTIFUL miracle will be there (: Make sure you come say hi!
Love you friends, I'll be back when we have more news and let you know exactly when Evie's treatment starts so you can be praying for her.
Bye for now!
I spoke with Kristi, our enzyme replacement coordinator this past week, and a tentative plan for Evie's treatment has been set! Praise God!
If all documents are signed, sealed, and delivered, we will do our baseline/screening visit for Evie on Thursday. You can pray that God will grant me the mental capacity to understand all of the numbers, measurements, dates and scheduling for Evie's treatment before we sign on the dotted line. Then she will go into the hospital Monday the 23rd for her initial IV dose of medication, and we may only have to stay for 2 or 3 days if all goes well! This means home for Thanksgiving, back Friday for some labs, and we will start her injections (shots) the following Monday. She will have these 3 times a week for the next 6 months, and tests scattered throughout the weeks to monitor her results. I am bursting with gratitude for the people who have worked so hard to get this started.
On a deeper note (scary, I know!)... I have had one of those days... Looking back on how God has touched my heart in the past few weeks.
It started at women's Bible study two Thursdays ago, when we were reading about how Jesus told Peter that he, Peter, would be crucified.
Then this past week we decided to take the kids to Coco Key when John got off of work. We had to hurry and get the girls out the door because you can only get in free before 5pm! So we hurriedly drove across town only to find out that it was a "black out day" and we couldn't get in. I was so frustrated! When we left we took 72nd street to Center to head west and get something to eat. As we were driving down Center street tears started streaming down my face. I hadn't driven down that part of Center street since I was pregnant with Evie... and we had visited the cemetary on 50th and Center to get familiar with where we would lay her to rest.
Jesus had told Peter how he would die. God knew before he sent Jesus to this earth, how Jesus would die. And in a distant comparison, when I was pregnant, we were told how Evie would die.
When people ask me how we survived the last few months of our pregnancy, I can only describe it as "one day at a time." The truth is, I KNOW death is not the end of Evie's life. We went to that cemetary half a dozen times to get familiar with Evie's doorway to the place God is preparing for her. To get comfortable with the symbolic place where we could go "visit" her. Where we could sit by her grave and weep because of how much we love and miss her. Was it painful? YES. Is it hard to consider even now??? It rips my heart out. But Jesus said "Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." God has not only prepared a place for Evie, but thankfully also for me, her mom, so I can hug, talk to, and walk the streets of Heaven with her for all of eternity! I hold firm to that truth, thank you Lord!
Now that we have had Evie home for 8 weeks, I am sitting with a towel... not a kleenex... as I did so many times when I was pregnant, thinking about that time when we thought we were going to lose her. And now instead of dropping to my knees and praying for a miracle, I usually drop face down on the floor thanking God for Evie, and for the 8 weeks of joy she has brought to our lives. We will all obviously face death someday. I am so glad I can face it knowing I will be reunited with my children in Heaven, and be incredibly thankful for the time we have together now.
Our dear friend and Pastor is doing a 4 week sermon series titled "It Would Take a Miracle." After what we have experienced the past several months, I just can't wait. If you are looking to find a church, or a place to hear about God's love for you, I personally invite you to come. The series is starting in December (Dec 6th) at Brookside Church. John, Lyla, I, and our BEAUTIFUL miracle will be there (: Make sure you come say hi!
Love you friends, I'll be back when we have more news and let you know exactly when Evie's treatment starts so you can be praying for her.
Bye for now!
Thursday, November 12, 2009
Treatment... thankful
Hello Friends!
It's been a good week, I have thought about blogging several times but haven't had a second to sit down!
Evie is doing well, she only gained 2oz this week, putting her at 7lb 14oz this morning, but at least she hasn't lost any weight. 'Failure to thrive' is a concern with these little ones, and her appetite is nothing close to that, so we are pleased. She has been coughing a little, but it doesn't seem like anything serious.
Treatment wise, we are still waiting for all of the little pieces to come together. Legal documents, signatures, approval, drug delivery, then we can have her baseline visit of x-rays, eye exam, etc. and get started following that. We thought we would start treatment next Monday, but it is looking more like we will start the following Monday, the 23rd. That would mean a hospital stay over Thanksgiving, but what could I be more thankful for than Evie getting the medicine she needs!? And my parents will be so thankful for the extra time off to watch Lyla! ha ha!
Speaking of thankful, I need to give a special shout out to Dr. Lutz at the Med Center & Childrens. God sent him to us at a perfect time, and without his keen eye and accurate diagnosis of Evie's condition we wouldn't have gotten her seizures under control as early as we did, and who knows what damage they might have caused. He also had her diagnosis quickly confirmed by three other specialists, one on each coast and one in St. Louis, and got the information together for her treatment so quickly. He makes me feel like Evie is his only patient (when I know he has hundreds!) and I don't even know how many countless hours he has spent getting things in line. He also has a team of people that work with him that have helped enormously also. I thank God for you Dr. Lutz!
And thanks to my mom, who has dropped everything numerous times to watch Lyla as I take Evie to her appointments, hospitalizations, etc. She is my sounding board when I need to just get it all out and she is nothing but supportive at all times. I watched her read her Bible daily growing up and I knew the importance of hiding God's word in my heart from an early age. THANKS MOM!
Lastly, for those of you who saw a crazy lady with a good looking guy and two kids at the Nebraska vs. Oklahoma game last weekend, yep, that was us! We went to the zoo last Saturday morning, and it was so nice outside we decided to go to Lincoln that night to tailgate and catch up with family. My aunt offered us extra tickets to the game, so we decided to try it out! My dad loaned me some socks since the sun was going down (which looked awesome with my flip flops) and we headed to Memorial Stadium. As I was walking up the stairs and people were staring at us hauling our two kids up to row 75 I breifly thought "have I lost my mind!?" but quickly remembered... we got free tickets to the NU vs. Oklahoma game! Nobody gives those up!
So it was both girls first Husker game... Lyla learned how to scream ridiculously loud and 'throw the bones'... something every good Husker fan knows how to do (:
I will put up a few pics.
Evie and mom - we made it to our seats!
GO BIG RED!!!
The balloons celebrating the girls first game... or the Huskers first score (:
Love you friends, hopefully I will have more good news soon.
It's been a good week, I have thought about blogging several times but haven't had a second to sit down!
Evie is doing well, she only gained 2oz this week, putting her at 7lb 14oz this morning, but at least she hasn't lost any weight. 'Failure to thrive' is a concern with these little ones, and her appetite is nothing close to that, so we are pleased. She has been coughing a little, but it doesn't seem like anything serious.
Treatment wise, we are still waiting for all of the little pieces to come together. Legal documents, signatures, approval, drug delivery, then we can have her baseline visit of x-rays, eye exam, etc. and get started following that. We thought we would start treatment next Monday, but it is looking more like we will start the following Monday, the 23rd. That would mean a hospital stay over Thanksgiving, but what could I be more thankful for than Evie getting the medicine she needs!? And my parents will be so thankful for the extra time off to watch Lyla! ha ha!
Speaking of thankful, I need to give a special shout out to Dr. Lutz at the Med Center & Childrens. God sent him to us at a perfect time, and without his keen eye and accurate diagnosis of Evie's condition we wouldn't have gotten her seizures under control as early as we did, and who knows what damage they might have caused. He also had her diagnosis quickly confirmed by three other specialists, one on each coast and one in St. Louis, and got the information together for her treatment so quickly. He makes me feel like Evie is his only patient (when I know he has hundreds!) and I don't even know how many countless hours he has spent getting things in line. He also has a team of people that work with him that have helped enormously also. I thank God for you Dr. Lutz!
And thanks to my mom, who has dropped everything numerous times to watch Lyla as I take Evie to her appointments, hospitalizations, etc. She is my sounding board when I need to just get it all out and she is nothing but supportive at all times. I watched her read her Bible daily growing up and I knew the importance of hiding God's word in my heart from an early age. THANKS MOM!
Lastly, for those of you who saw a crazy lady with a good looking guy and two kids at the Nebraska vs. Oklahoma game last weekend, yep, that was us! We went to the zoo last Saturday morning, and it was so nice outside we decided to go to Lincoln that night to tailgate and catch up with family. My aunt offered us extra tickets to the game, so we decided to try it out! My dad loaned me some socks since the sun was going down (which looked awesome with my flip flops) and we headed to Memorial Stadium. As I was walking up the stairs and people were staring at us hauling our two kids up to row 75 I breifly thought "have I lost my mind!?" but quickly remembered... we got free tickets to the NU vs. Oklahoma game! Nobody gives those up!
So it was both girls first Husker game... Lyla learned how to scream ridiculously loud and 'throw the bones'... something every good Husker fan knows how to do (:
I will put up a few pics.
Evie and mom - we made it to our seats!
GO BIG RED!!! The balloons celebrating the girls first game... or the Huskers first score (:Love you friends, hopefully I will have more good news soon.
Thursday, November 5, 2009
it's a go!... well almost (:
Hi Friends!
I got word today that we have "conditional approval" from the IRB. That is a good thing! It means some things need to be changed, hopefully just minor wording changes, and we will be good to go. A representative from the drug company is coming next Wednesday, to hopefully get everything hammered out and finalized so we can get started.
They are still looking at the week of Nov 16th, and if Evie does well and tolerates her first IV dose we may not have to stay in the hospital the whole 2 weeks of beginning treatment. That would be wonderful.
If this medicine does what it should do it should be fantastic. The first few patients have had amazing results and that is what we are going to continue to pray for. I so badly want her to be able to do the things a "normal" kid and adult gets to do, so we are starting at square 1, and this treatment seems to be where we need to begin. I feel so blessed that there is a treatment for Evie's condition, and God has paved the way for us this far.
Thanks again for prayers, I am continually amazed at how clearly and wonderfully they have been answered. Thank you Lord!
Hopefully I'll be back soon with more good news (: Love you!
I got word today that we have "conditional approval" from the IRB. That is a good thing! It means some things need to be changed, hopefully just minor wording changes, and we will be good to go. A representative from the drug company is coming next Wednesday, to hopefully get everything hammered out and finalized so we can get started.
They are still looking at the week of Nov 16th, and if Evie does well and tolerates her first IV dose we may not have to stay in the hospital the whole 2 weeks of beginning treatment. That would be wonderful.
If this medicine does what it should do it should be fantastic. The first few patients have had amazing results and that is what we are going to continue to pray for. I so badly want her to be able to do the things a "normal" kid and adult gets to do, so we are starting at square 1, and this treatment seems to be where we need to begin. I feel so blessed that there is a treatment for Evie's condition, and God has paved the way for us this far.
Thanks again for prayers, I am continually amazed at how clearly and wonderfully they have been answered. Thank you Lord!
Hopefully I'll be back soon with more good news (: Love you!
thursday... irb day!
No news yet, still waiting... BUT Evie weighed 7lb 12 oz this morning!
Go Evie!!!
Go Evie!!!
Monday, November 2, 2009
Hello!
Hi Friends (:
Sorry it's been almost a week... John went back to work last Monday, and let's just say he's a big help around here! The girls are doing well... we are passing around a cold but luckily it's just a head cold, nothing that should get into Evie's chest and affect her breathing. We had a great Halloween... Lyla was a tiger, Evie was a pumpkin. I will post some pictures. My grandma was in town all weekend, which was so much fun.
I talked to our geneticist last Friday, and it sounds like the IRB is having another meeting this Thursday, Nov 5th. I think this is the one where Evie's trial will be discussed. I don't exactly understand why they didn't decide last week, but it sounds like they are trying to get it passed the best way possible, so we are content with that. If it goes through we will do her treatment at the Nebraska Medical Center, where John will be working in the operating room starting next week! That should hopefully help, having us all near the same place.
As for John and I... I have been pretty anxious the past few days, and John has been working a lot. I think the past 6 weeks are finally catching up with me. Now that we have some down time I feel like I'm processing the past 6 months more than ever. I haven't spent as much time in prayer lately as I did when I was pregnant (could be lack of sleep!?), which is something I am going to change immediately. I spent some time last night on my knees talking with my Lord instead of worrying... should have thought of that sooner!
Phillipians 4:7 "And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Transcend my understanding Lord! I am too tired to wrap my mind around all of the possibilities of what may come.
Well, sleep is a precious thing these days!
Love you friends... I will update as soon as I hear anything.
Prayer Requests:
1. Evie and Lyla would stay healthy... if Evie is healthy she may not have to stay as long in the hospital when her drug trial starts.
2. That the IRB meeting will go well.
3. Rest for John and I now that he's back at work and life is picking up again.
Happy Halloween from my scary tiger!
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