Friday, March 31, 2006

March 31, 2006

God is so good!  Thank you for praying specifically for Ellie Kate.  This past week she gained 13 oz, which is huge!  The doctors are so pleased, and will continue to watch her weight over the next few months.

This weekend Ellie will be wearing a heart monitor.  This will check her heart rate and make sure everything is okay.  It is portable and as convenient as you can get with this sort of thing!  We will know the results sometime next week.

We are continually humbled and overwhelmed by the grace, love, support and prayers you are showing us.  Just this week we received an email from a church in Pakistan who fasted and prayed for Ellie Kate for three days!  Their entire church body participated.   Imagine, this church body, who undoubtedly faces extreme persecution and lives amongst violence, taking three days to lift our daughter before the Lord.  What an amazing family of Believers we belong to! Stories like these encourage our hearts and encourage our faith in the Lord Jesus Christ.

Ways to Pray:
1.  That EKM will continue to gain weight
2.  That the heart tests will all show positive things
3.  That EKM's awareness and development will continue to increase

Also, many of you have asked to support us financially.  Again, what a humbling thing for us! Our confidence is in Jehovah Jireh, Our Provider, so we in no way are soliciting or asking for gifts.  We simply want to give you information that people have asked for. Mike's brother Drew is a CPA and is handling some of our donations.  You can make a donation on their website at www.babymaconline.com - just click on the "Ellie Kate McLaughlin" link.

God is so very faithful!  We love and appreciate each of you.

Ryan

Tuesday, March 21, 2006

March 21, 2006

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!

Thursday, March 16, 2006

March 16, 2006

Last Thursday, Ellie Kate saw her cardiologist.  It was a great visit - we really enjoy the doctor, which is a blessing.  The doctor believes Ellie's heart is fine, but we will continue to watch and keep her on her heart meds until she is a year old - just taking precautionary measures.

Next Tuesday we will be visiting the neurologist once again for a check up and evaluating her meds.  The neurologist is great too!  In fact, every one of the doctors we work with are amazing.  They call us and email us almost daily.  It is a blessing to be so heavily watched by such an incredible team of professionals!

It seems that we have constantly been under fire for the last several months.  This week we found out that Conner busted his ear drums because of a severe sinus infection (not to worry - this isn't too uncommon and should clear up on it's own).  Ellie Kate too is still suffering from a sinus infection.  Both kids are now on stronger antibiotics for their infections.

Also, Ellie Kate has been pretty much inconsolable for the last two weeks or so.  She is incredibly irritable, and in visible pain.  This, of course, is heartbreaking.  And, it is stressful to have a baby who literally cries all of the time unless she is eating.  She isn't sleeping very much either.  Mike, Conner and I feel very depleted.

Please pray that we will figure out what is going on.  Is it her meds causing her pain and discomfort?  Is she teething?  Is it the sinus infection?  Is this part of NKH?  Is it a combo of all of the above?  These questions are constantly on our minds.  Pray that God will give the doctors wisdom as we try to comfort baby Ellie Kate.

We love you all and will post another update soon!

Ryan

Wednesday, March 8, 2006

March 8, 2006

Ellie Kate saw her geneticist on Monday.  The best way to describe this visit was encouraging and up-beat.  Our geneticist was very pleased with Ellie Kate's development... her neck strength, her hand-eye coordination, the fact that she has rolled over, etc.  Our geneticist even said that she is doing quite well and doing more things than any child with this disorder that she can think of.  We will begin to adjust her medicine levels since she is growing so that will definitely be interesting.

We see the cardiologist on Thursday (March 9).  We expect this visit to go well and to have the cardiologist  confirm what we suspect, that is that Ellie Kate's heart is fine and no need to worry about it.

We know that things can change and that Ellie is still only 3 months old but it is extremely comforting to know that at the very least Ellie Kate is stronger and leading as close to normal a life as we could have expected.

If you could, continue to pray for Ellie Kate's development... we'll know more about her condition and this disorders effect on her body once she reaches or misses her milestones (crawling, sitting up walking, etc.)

Also, pray for Ryan and I to continue to experience God's love and peace throughout this ordeal.  At times we feel as if we have reached our limit.  We have faith that God is all around us and blessing us with this girl.  Pray that we see every day with her as a blessing.

We love you and really appreciate all of your prayers and support.


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

50k Try