Hi Friends (:
We are gearing up for week 2 of Evie's treatment. It will be another busy week, we have things scheduled Mon, Tues, Wed, and Friday this week. Evie has had some trouble with gagging and vomiting, but other than that she is doing really well.
If you could pray for Evie that she would continue to grow and that this treatment would work that is what we are praying for! Also for safe travels to and from the Med Center, I don't think this snow is going to melt anytime soon... and that I can stay positive and upbeat about Evie's treatment with all of the hours we are logging at the hospital, it's difficult to keep focused when I also have to keep Lyla under control.
Love you friends!!! Thanks for checking in and praying!
Monday, December 14, 2009
Thursday, December 10, 2009
so hard...
sorry i'm double posting today -
God has laid some friends heavy on my heart tonight. Could you pray for my dear friend Lindsey who lost her 8 week old daughter Jensina a few months ago? And a guy I knew in college, John, who I found out just lost his wife in an accident this past week?
With the ups and downs of Evie's condition, the thought of actually losing her is painful beyond words. If you could join me in praying for Lindsey, John and their families, and that God would richly bless them during this holiday season in the midst of their greif. They both know Jesus and I'm sure their loved ones are waiting for them in Heaven.
God is big. Heaven is waiting, but sometimes Life is so hard.
God has laid some friends heavy on my heart tonight. Could you pray for my dear friend Lindsey who lost her 8 week old daughter Jensina a few months ago? And a guy I knew in college, John, who I found out just lost his wife in an accident this past week?
With the ups and downs of Evie's condition, the thought of actually losing her is painful beyond words. If you could join me in praying for Lindsey, John and their families, and that God would richly bless them during this holiday season in the midst of their greif. They both know Jesus and I'm sure their loved ones are waiting for them in Heaven.
God is big. Heaven is waiting, but sometimes Life is so hard.
Update and Saturday...
Hi Friends,
Evie had her second injection yesterday, and so far so good! She has been coughing a bit and threw up a few times today, which we aren't sure whether to attribute to a cold, flu, or side effects of the medicine. She has been really sleepy, so we think she might be coming down with something. Prayers for healing and staying healthy please! The LIED transplant center where she will be getting her injections is just beautiful, and the nurses were wonderful. I am looking forward to receiving her injections there, it seems like a perfect fit for her (:
Also, this Saturday the Millard West DECA is putting on a Spaghetti Feed at Millard West from 5-7:30pm. They are raising money for Now I Lay Me Down to Sleep for their DECA project. It should be a great time, we are planning on getting there around 6 (: There is a basketball game afterwards if you would like to stay - we have to head out to John's work party.
Love you Friends, THANKS for checking in on us! I can't believe how far Evie has come in these past few months, Praise God for his limitless blessings (:
Lindsey
Evie had her second injection yesterday, and so far so good! She has been coughing a bit and threw up a few times today, which we aren't sure whether to attribute to a cold, flu, or side effects of the medicine. She has been really sleepy, so we think she might be coming down with something. Prayers for healing and staying healthy please! The LIED transplant center where she will be getting her injections is just beautiful, and the nurses were wonderful. I am looking forward to receiving her injections there, it seems like a perfect fit for her (:
Also, this Saturday the Millard West DECA is putting on a Spaghetti Feed at Millard West from 5-7:30pm. They are raising money for Now I Lay Me Down to Sleep for their DECA project. It should be a great time, we are planning on getting there around 6 (: There is a basketball game afterwards if you would like to stay - we have to head out to John's work party.
Love you Friends, THANKS for checking in on us! I can't believe how far Evie has come in these past few months, Praise God for his limitless blessings (:
Lindsey
Tuesday, December 8, 2009
Snuggled in... at home!
Hi Friends!
Evie had her first injection yesterday morning... and it went great!!! No side effects, no allergic reactions, not a thing. Go Evie Jayne! And Lyla was relatively good most of the time for being in a small beige PICU room with no windows to the outside world... Go Lyla! John and I took turns sleeping at the hospital hotel, so one of us could stay with Eve, and Lyla could get some sleep, it was wonderful.
We start injections in the LIED transplant center tomorrow, and continue these on Monday, Wednesday, and Friday for the next 6 months. We are going to try to do them in the late afternoon so John can take Lyla home when he gets off of work at 3:30. Hopefully it will work our well, or we will re-evaluate.
THANK YOU for your prayers, I knew I was being prayed for when I woke up this morning curled up in a plastic recliner with my head on a wooden armrest, and was in a great mood! For someone who doesn't function well on little sleep, that is a direct result of the power of prayer. I have the best friends and family.
It's family time! Thanks for checking in, and I'll be sure to update soon (:
Love you all (:
AND THANK YOU Kristi and Dr. Lutz who have worked so hard to make this treatment work for us. You are amazing and wonderful.
Evie had her first injection yesterday morning... and it went great!!! No side effects, no allergic reactions, not a thing. Go Evie Jayne! And Lyla was relatively good most of the time for being in a small beige PICU room with no windows to the outside world... Go Lyla! John and I took turns sleeping at the hospital hotel, so one of us could stay with Eve, and Lyla could get some sleep, it was wonderful.
We start injections in the LIED transplant center tomorrow, and continue these on Monday, Wednesday, and Friday for the next 6 months. We are going to try to do them in the late afternoon so John can take Lyla home when he gets off of work at 3:30. Hopefully it will work our well, or we will re-evaluate.
THANK YOU for your prayers, I knew I was being prayed for when I woke up this morning curled up in a plastic recliner with my head on a wooden armrest, and was in a great mood! For someone who doesn't function well on little sleep, that is a direct result of the power of prayer. I have the best friends and family.
It's family time! Thanks for checking in, and I'll be sure to update soon (:
Love you all (:
AND THANK YOU Kristi and Dr. Lutz who have worked so hard to make this treatment work for us. You are amazing and wonderful.
Sunday, December 6, 2009
Packing for the hospital (:
Hi Friends (:
Well, we are starting treatment TOMORROW! It is finally here. I just realized today while visiting a friend that Evie is 11 weeks already... meaning we have been waiting for treatment to start for almost 2 months. I am ready, and nervous. We need prayers that she won't have an allergic reaction to the medication, and that her body tolerates and responds well. Evie is skipping the IV dose of the medication because of the medicine she is on for her seizures, which I am happy about. She will just get a shot, and be monitored.
We will be staying at the hospital overnight, and will be coming home Tuesday. We go back Wednesday and Friday for her 2nd and 3rd shots, and stay a few hours each time for monitoring. Then it's shots 3 times a week for the next 6 months.
I was telling friends recently that I haven't spent a lot of time going back and reading through old posts on this blog... which I should. I decided to check out "September" so I could re-post the verses we had in our hospital room:
Isaiah 40:28-31
28 Have you never heard?
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure
the depths of his understanding.
29 He gives power to the weak
and strength to the powerless.
30 Even youths will become weak and tired,
and young men will fall in exhaustion.
31 But those who trust in the Lord
29 He gives power to the weak
and strength to the powerless.
30 Even youths will become weak and tired,
and young men will fall in exhaustion.
31 But those who trust in the Lord
will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.
Joshua 1:99
This is my command—
be strong and courageous!
Do not be afraid or discouraged.
For the Lord your God is with you
wherever you go.
Lamentations 3:22 - 23.
Because of the Lord's great love
we are not consumed,
for His compassions never fail.
They are new every morning;
great is Your faithfulness.
Revelation 3:20
Here I am!
I stand at the door and knock.
If anyone hears My voice
and opens the door,
I will come in and eat with him,
and he with Me.
wow. compared to what we were facing September 17, 2009 tomorrow is a gift from Heaven. Thank you Lord.
I don't think I'll have a computer at the hospital - I will post when I get back.
Love you friends (:
Wednesday, December 2, 2009
home again!
Hi Friends (:
Surgery went so well, no problems and Evie did great. We waited around for home health instructions, learned how to flush the port, ate dinner, and are going to bed.
Praise God that everything is great, and we didn't have to stay overnight!
THANK YOU FOR PRAYING! Love you!!!
Surgery went so well, no problems and Evie did great. We waited around for home health instructions, learned how to flush the port, ate dinner, and are going to bed.
Praise God that everything is great, and we didn't have to stay overnight!
THANK YOU FOR PRAYING! Love you!!!
Tuesday, December 1, 2009
Surgery Tomorrow...
Hi Friends,
Quick update before bed... Evie is going to have a "broviac catheter" placed tomorrow, Wednesday, at 2pm. It will provide the doctors a place to take blood samples from her during her treatment without poking and prodding in her arm. It is similar to a "port" but doesn't require surgery to take out... one round of general anesthesia is enough for me.
We go in at noon, surgery is at 2, and they will monitor her for at least a few hours afterward. She is scheduled overnight for observation, but they don't think we will have to stay.
Honestly, I am scared. We have had a lot of little procedures, but the sound of "surgery" makes me so nervous. It just sounds like a lot for a little 8 pound body.
Also, we had Evie's 2 month check up today, and she is in the 1% for weight, and 0% for height. They are going to put some more calories in her formula soon, so hopefully that will help her catch up.
Prayer requests: That God will provide the doctors with the ability to perfectly place Evie's catheter, the surgery will go smoothly, and most importantly that her body will react okay to the anesthesia, catheter, and surgery.
After her surgery tomorrow, she has her immunizations and a 24 hour urine sample Thursday, and 3 hours of tests and x-rays on Friday... gearing us up for starting treatment next week. I'll be honest, I've gotten awfully used to having her home, safe in my arms, so pray for me that I can hold it together the next few weeks.
Love you friends (:
Quick update before bed... Evie is going to have a "broviac catheter" placed tomorrow, Wednesday, at 2pm. It will provide the doctors a place to take blood samples from her during her treatment without poking and prodding in her arm. It is similar to a "port" but doesn't require surgery to take out... one round of general anesthesia is enough for me.
We go in at noon, surgery is at 2, and they will monitor her for at least a few hours afterward. She is scheduled overnight for observation, but they don't think we will have to stay.
Honestly, I am scared. We have had a lot of little procedures, but the sound of "surgery" makes me so nervous. It just sounds like a lot for a little 8 pound body.
Also, we had Evie's 2 month check up today, and she is in the 1% for weight, and 0% for height. They are going to put some more calories in her formula soon, so hopefully that will help her catch up.
Prayer requests: That God will provide the doctors with the ability to perfectly place Evie's catheter, the surgery will go smoothly, and most importantly that her body will react okay to the anesthesia, catheter, and surgery.
After her surgery tomorrow, she has her immunizations and a 24 hour urine sample Thursday, and 3 hours of tests and x-rays on Friday... gearing us up for starting treatment next week. I'll be honest, I've gotten awfully used to having her home, safe in my arms, so pray for me that I can hold it together the next few weeks.
Love you friends (:
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