First of all, I thank you for praying for Ellie - especially this past week as we have been searching for ways to ease her pain and discomfort. I am happy to say she is no longer crying around the clock and she seems to be much more comfortable! We have worked with doctors to tweak her meds a bit which has helped her to be more comfortable. Of course, we know God has touched her as well!
Today we saw Ellie's neurologist. The doctor was encouraged by EK's development. She is definitely doing better than what all of our doctors have expected! The neurologist is especially excited about the fact that there have been no seizures. Praise the Lord for that!
There are a few things that the neurologist is concerned with. EK is hyper-ketonic or in a sense, hyper-active. She has so many signals going off in her brain, which cause her to move around a lot. She is very easily overstimulated. This hyper-activity is the cause for some of her irregular movements, her strange eye movements, and at times, her crying. We don't know if this will be something she deals with all of her life, but we do know that it is directly related to NKH. Ellie does however calm down and finally focus. She does this especially when she has boundaries - either our arms or her car seat!
As Ellie gets older, we are realizing more and more that our little girl is not "normal". We found out recently that we are the only case of NKH known in OK at this time. Also, the oldest known person with NKH is only 13. These things can be overwhelming at times. But, we know God has worked in Ellie in incredible ways thus far, and He isn't through yet! We are choosing to treasure every moment, every day that we have with our precious little girl.
Ways to Pray:
1. Pray that EK would gain weight! She desperately needs to gain some weight. She just burns all of her calories off with all of her movement and her crying.
2. Pray that she would continue to develop:
a. focus more
b. laugh and smile more
3. Pray that she would be able to better control her movements
4. Pray that she wouldn't be in any pain
Also, please join us in praying for other families dealing with NKH. Our hearts break for those with NKH children who are not doing as well as our Ellie. What a tough thing this is (for more info check out http://www.nkh-network.org/)!
One exciting thing that happened today - Ellie laughed for the first time! She smiled more than she ever has tonight, which was SO incredibly encouraging to Mike and I. Please pray that she continues to do things like that!
I leave you with words from a song that has been floating through my mind all day . . . "Praise God from whom all blessings flow! Praise Him all creatures dear below! Praise Him above ye heavenly host! Praise Father, Son and Holy Ghost".
We love you,
Ryan
PS: We recently took some family pictures, as we wanted to capture this time in our lives with EK. A few of them are posted on this site. I hope you enjoy!
Showing posts with label Progress. Show all posts
Showing posts with label Progress. Show all posts
Tuesday, March 21, 2006
Saturday, March 4, 2006
March 4, 2006
This week has been a good one! Ellie Kate now weighs in at 10 pounds - Praise the Lord. She rolled over several times this week again as well! We are so pleased that she is gaining strength. Her constant crying is subsiding as she now takes Previcid twice daily. It really seems to help settle her down, and I think that is one reason she is gaining more weight!
Things to pray for this week:
1. That Ellie Kate will become more aware of her surroundings and that she will focus on faces more.
2. Pray that she will start smiling more for us as she begins to recognize faces
3. Pray that she will continue to gain weight
4. Pray for wisdom for the doctors we will see this week
We visit the Geneticist and the Cardiologist this week. We will be sure to post an update after those appointments! We are still trusting God to take care of our little girl, we are trusting Him heal her as He sees fit, and we are trusting Him to provide for us through all of this. He is so faithful!
We love you all!
The McLaughlins
More New Pics:
http://pg.photos.yahoo.com/ph/mwmcl/album?.dir=f235&.src=ph&store=&prodid=&.done=http%3a//photos.yahoo.com/ph//my_photos
Things to pray for this week:
1. That Ellie Kate will become more aware of her surroundings and that she will focus on faces more.
2. Pray that she will start smiling more for us as she begins to recognize faces
3. Pray that she will continue to gain weight
4. Pray for wisdom for the doctors we will see this week
We visit the Geneticist and the Cardiologist this week. We will be sure to post an update after those appointments! We are still trusting God to take care of our little girl, we are trusting Him heal her as He sees fit, and we are trusting Him to provide for us through all of this. He is so faithful!
We love you all!
The McLaughlins
More New Pics:
http://pg.photos.yahoo.com/ph/mwmcl/album?.dir=f235&.src=ph&store=&prodid=&.done=http%3a//photos.yahoo.com/ph//my_photos
Tuesday, February 21, 2006
February 21, 2006
Precious Friends,
Ellie Kate is continuing to do well. She smiled for the first time this weekend, which has brought so much joy to my heart! It is so nice to see her do things like that. She is also clasping her hands, reaching for toys, and she even rolled over twice last week! We are thrilled with the progress she is making, especially since so many kids with NKH deteriorate rather than progress in their physical and mental abilities.
If you would like, you can join us in praying for the following:
1. That Ellie would gain weight!
2. That she would get on a more regular schedule
3. That she wouldn't cry as often, and that if she is in pain that would subside
4. Pray for Conner, that he will adjust to having a new sister who requires a lot of attention
5. Pray for God's provision for our family
Also, as of Friday, February 24th, I will no longer be working at Oklahoma City University. Ellie's situation requires me to stay at home, so that is what I will be doing from now on. I'm excited and scared at the same time. I know it will be an adjustment, so I appreciate your prayers on that. From now on you can reach me by email at tullyryan@hotmail.com.
I hope you enjoy these most recent pictures of our family. If you look back at some of the pics from Ellie's earlier hospitalizations, it is quite amazing to see the difference that has occurred! Of course, we KNOW God has made these changes in her and is bringing her along, healing her in His time.
We love you,
Ryan
http://pg.photos.yahoo.com/ph/mwmcl/album?.dir=/1f65
Ellie Kate is continuing to do well. She smiled for the first time this weekend, which has brought so much joy to my heart! It is so nice to see her do things like that. She is also clasping her hands, reaching for toys, and she even rolled over twice last week! We are thrilled with the progress she is making, especially since so many kids with NKH deteriorate rather than progress in their physical and mental abilities.
If you would like, you can join us in praying for the following:
1. That Ellie would gain weight!
2. That she would get on a more regular schedule
3. That she wouldn't cry as often, and that if she is in pain that would subside
4. Pray for Conner, that he will adjust to having a new sister who requires a lot of attention
5. Pray for God's provision for our family
Also, as of Friday, February 24th, I will no longer be working at Oklahoma City University. Ellie's situation requires me to stay at home, so that is what I will be doing from now on. I'm excited and scared at the same time. I know it will be an adjustment, so I appreciate your prayers on that. From now on you can reach me by email at tullyryan@hotmail.com.
I hope you enjoy these most recent pictures of our family. If you look back at some of the pics from Ellie's earlier hospitalizations, it is quite amazing to see the difference that has occurred! Of course, we KNOW God has made these changes in her and is bringing her along, healing her in His time.
We love you,
Ryan
http://pg.photos.yahoo.com/ph/mwmcl/album?.dir=/1f65
Subscribe to:
Posts (Atom)