Hello and to the point…

The Seizures: As of today, the seizures have (for lack of a better descriptive word) gone down, to the point that we don’t think she has had any the past few days.  My guess is that they will simply come in waves.  Several for several days… and then we won’t see any for several days.   We know that the medicine that they have her on now will likely not stop or control every seizure, just a majority of them.  The docs are still looking into all the anti-seizure medicine options.

GI situation:  Yesterday they performed another abdominal X-Ray and they can’t see any evidence of an obstruction.  I guess this is “neutral” news for the very simple fact that she doesn’t have an obstruction.  But it does not offer any clues as to what the underlying cause of the GI complications.

EKM is still having problems with her distended stomach so they have stopped her feeds.  Her stomach went down but as of yesterday it became distended again, after a few days without milk.  So this is yet another troubling turn of events.

There are only speculations as to why her stomach is starting to behave like her intestines and not push air through her GI Tract.  We know from the biopsy that it is not Hershprungs Disease.  

Miscellaneous updates: We aren’t sure when our house will be put back together.  We have been in constant contact with insurance adjusters, agents and repairmen.  We aren’t even sure to the exact extent of the damage.  Yesterday we learned that more of our kitchen is likely damaged than expected.  So maybe we’ll get some new cabinets and such.  At least that could be a positive.

We aren’t sure exactly when we will be leaving the hospital either.  We are going to speak with some of the doctors about home care… what to look for, what to avoid, what to expect, etc.

The following quoted material has been taken from a message sent by one of Ryan’s sorority about a March of Dime’s Walk:

"I am sure you have all heard about Ellie Kate.  Our thoughts and prayers are with her family. As a way of helping we are going to be participating in the March of Dimes on May 6, 2006 and will be walking in her honor.
We also have baby banks located all over campus to help raise money. If you would like to help out please send donations to the Alpha Gamma Delta house or call Sheena.  …  We appreciate everything you do and we hope to see you soon!"

Everyone is welcomed to join us as we walk next Saturday in honor of Ellie Kate.  The walk begins downtown at the Myriad Gardens.  Registration is at 8:30 and the walk begins around 9:30am.  Our family will be there and we look forward to seeing anyone who would like to attend.  For more specific details and for t-shirt info, contact the ladies above.

Lastly, thank you for your unwavering support and prayers.  We are blessed to have such friends and family that love us and care for us.  I think everyone desires a pat on the back.  You know you deserve it… come on, start patting yourself.

 - MFM

Though He slay me, yet will I trust Him.  Job 13:15

April 21, 2006

Dearest Friends and Prayer Partners,

Thank you for continuously lifting us up in prayer!  We are still watching and waiting - taking it a day at a time here at Children's Hospital.  Everyone has been great (especially our nurses:)), and the teams are working hard to find a solution to EKM's problems.

As of now, she is still having a few seizures.  Her heart rate has been inconsistent, and there are times when it stays quite low.  But, the doctors are not too alarmed.  She is on all the proper medication for both of these things - the rest is just in God's hands.

X-Rays yesterday and today show a "possible obstruction" once again, and it is just baffling the doctors.  They will be working on that today trying to figure out what to do next.  Meanwhile, EKM is being fed breast milk via an NG tube in her nose, and is recieving lots of nutrition through her TPN (temporary feeding she recieves through her IV).  She continues to slowly gain weight, which is great considering all that she has been through!

Below is an excerpt from an email on behalf of Ellie Kate.  The undergraduates in my sorority house (Alpha Gamma Delta at UCO) are putting some incredible things together for our family.  They will be walking for EKM in May during the March of Dimes.  We are completely overwhelmed by this precious gesture!  I am so proud to be part of this amazing group of young women.  Others are welcome to participate and walk as well!  Just contact the girls listed below in the email:


"Hello Ladies,
    I am sure you have all heard about Ellie Kate. Our thoughts and prayers are with her family. As a way of helping we are going to be participating in the March of Dimes on May 6, 2006 and will be walking in her honor.  Jackson our Purchasing Coordinator is having t-shirts made for the girls to walk in that are blue and say " I'm running for Ellie Kate" , so if you are interested please contact Jackson.
 We also have baby banks located all over campus to help raise money. If you would like to help out please send donations to the Alpha Gamma Delta house or call Sheena. Lastly, April 25, 2006 Alpha Gams will be waitressing at Pizza Hut Italian bistro on Memorial and May during lunch and dinner to also help with awareness. Please come out and support us! We appreciate everything you do and we hope to see you soon!"

Much love to everyone.  We will update again as things develop!

Ryan

April 17, 2006

Dear Friends and Family,

I hope you had a blessed Easter!  We had a great Easter, but spent the holiday in the hospital - much like we did with Christmas, New Year's and Mike's bday.  OU Children's Hospital has been great.  As Mike posted earlier, the facilities are pretty outdated, but the staff is incredible.

As for EKM - most importantly, she is no longer in pain.  We are so glad that we made the move from Baptist to here if only for that reason alone!  No more hours of crying, screaming, and painful movements.  Though sedated, EK is able to have moments of alertness.

These past few days have been precious.  We know we are limited on time, although unsure of just how limited we truly are.  We have had a lot of family time and have been taking many pictures and videos of our darling girl.  Ellie is still have seizures - quite frequently, although the severity of the seizures has decreased dramatically.

Right now the plan is to seek out all options we have concerning EK.  She is still not tolerating her feeds, but is receiving nutrition through her main line (located now in her chest).  Doctors have changed meds and her tummy seems to be much more comfortable.  We will continue to consult with the professionals here until we have sought out every possible treatment and remedy.  We have now though come to the conclusion that Ellie's NKH is rapidly progressing.

Another crazy thing happened to us this weekend as well - our hot water tank busted in our house!  The funny thing (well, funny to us) is that the hot water tank is in our attic.  Soooooo, our attic and ceilings have flooded!  We will have to replace ceilings,walls, cabinets, and possibly some furniture due to the destruction.  God is good though because Mike's parents happened to be at the house while it happened, and we were able to turn off the water before it caused damage to the entire house.  Thank goodness for home owner's insurance!

Ways to Pray:
1. That EKM will continue to be at peace and not in pain
2.  Pray for wisdom for the docs
3. Pray for us that we would have peace and wisdom
4.  Pray that we would be prepared for the future
5.  That VERY SOON our family would be reunited and we can go home (wherever that might be, just not in a hospital!!)

Thank you so very much for all of your prayers, love, concern, calls, notes, hugs, etc.  You are such an encouragement to us!  We love you all dearly.

Ryan
Is. 43:10

April 14, 2006

We've made the move to OU Children's Hospital.  It's a completely different environment, but then again, we didn't pick this hospital for its paint scheme or floor plan and layouts.  Ellie's geneticist saw her last night at 11:00 PM, so the move has already shown itself to be beneficial.

As some of our first updates stated, Ellie's disorder is devastating.  NonKetotic Hyperglycinemia (or Glycine Encephalopathy) is an extremely rare metabolic disorder that is destructive to the body even when on an aggressive medicine regime.  I lead with that to say this:  Ellie is experiencing more and more seizures.  They are coming harder and longer.  We are adimently trying to counter them with the appropriate meds but this is proving difficult.

We are still fighting for our daughter.  We love you and thoroughly appreciate your prayers, thoughts and support.

 - MFM

April 13, 2006

The last 2-3 days have been very difficult.  Elizabeth has experienced some seizures.  They are partial or focal seizures... lasting anywhere from 5-20 seconds.  That could be a reaction to some of the new medicines she is on or an advancing of her condition.  It's too difficult to tell right now.

The other difficult news has been that her veins are growing tired faster and faster from the many IV sticks.  So much so that she had to undergo surgery today to place a catheter style main-line in her chest.  This will allow her once again resume IV feedings and IV medicine.

The bigger news of all this is that we are trying to get her transferred to OU Children's Hospital.  Her specialists are there and being a college, they naturally have more specialists in all the other areas as well.  The reason why we haven't been there the entire time is, bed space.  OU Children's bed space almost always fills up faster than Baptist so we always get diverted to Baptist.

We'll keep you all updated as soon as something changes.

April 10, 2006

This is going to be one of the weirdest and funniest posts ever but... Ellie Kate pooped last night.  She did it all on her own, with no help from Glycerin, enema, suppository or the like.  Her stomach was battling all night last night, causing her quite a bit of pain and discomfort... but after a few hours, she finally got some relief.  Hopefully this is a sign that things are not only moving around in her system but moving through her system.

This may or may not be a news flash but Ellie Kate is a fire cracker.  This morning she decided that she was tired of where the IV was so she pulled it out. This isn't the first time she randomly started pulling at her tubes and lines.  So she spent a good part of this morning being held down by a team of nurses while they found another place for her IV (her foot).  I'm not sure if there is a weight-lifting competition for 4 month olds but EKM would win if there was such a thing.  She is ridiculously strong.  But she is way cute, and by way cute, I mean totally beautiful.

Once again, we'll meet with our handful of doctors and update this page as we get updated.

Here are some prayer suggestions for those with the time:
(1) pray that EKM will continue to have movements, which in turn will eliminate all the barium in her system.
(2) pray that her system will return to its normal motility and function.
(3) pray for her momma, Ryan Elizabeth... this has been a long and grueling ordeal for Ryan.  She is very tired and wants to take EKM home.
(4) pray for Conner, he's tired of not having his parents at home.

 - MFM

April 7, 2006

What we've learned up to this point is that something is wrong with Ellie Kate's small intestine.  The word that is used to describe what is wrong is "ileus"... meaning intestinal obstruction.  We don't know if this is an intermittent obstruction, partial obstruction or (as one doctor has hypothesized) a showing of poor muscle tone related to NKH.  The last possibility is something that I dispute, based on no literature that I've found to support it but he is a doctor and might be smarter than me.... might.

Anyway, the treatment regime is consisting of TPN, reglan, and 1-2 ozs of milk every 3 hours.  We'll try this approach to see if it (A) stimulates her small intestine and (B) the reglan helps the ileus.  If this doesn't work we will probably transport EKM to another facility... possibly back to Houston.

Pray that Ellie Kate's small intestine will start to clear up and function properly again.  We'll keep you updated once we receive updates.

 - MFM

April 5, 2006

Ellie Kate has endured a battery of testing during this hospital stay... and it looks like we may be getting closer to knowing what is causing all the GI problems.  Yesterday, a "lower GI" was performed and with no signs or evidence of an obstruction.  This morning, an "upper GI" was administered.  This test took much longer to perform, for reasons not germane to this post (ask your doctor about the diffrence between and betwixt the two.)

From the upper GI, the preliminary feedback is that something is not right.  This created a melancholy reaction from Ryan and I because we don't want anything to be wrong with EKM.  But, since something is wrong with her, we want to know what it is.

After we get a definitive answer to what it is, we should then learn what treatments and remedies are at our disposal.  Tomorrow has promise.  Promise in that we are one step closer to relieving EKM's pain and discomfort and one step closer to her and her mommy sleeping in beds under my roof and not Integris's roof.

Thank you for the prayers, emails, phone calls, carrier pigeons and the like.  In all seriousness, I enjoy reading this website because of the uplifting nature of your thoughts and prayers.  You are evidence that God is real and working in my life and the lives of my family.

Thank you and Good Night Now.

 - MFM

April 4, 2006

A lot has happened since the past update.  The cliff notes version is that Ellie Kate is and will be undergoing some GastroIntestinal (GI) testing.  They performed a lower GI tonight that the GI specialist will look at in the morning.  The preliminary analysis of it is that she does not have any blockage in her large intestine.  Ellie Kate should undergo an upper GI tomorrow at some point.

The bad news is that she had her first seizure this morning.  We have her in the PICU (our home away from home)... she has not had any since the morning, but she has resummed her myclonic jerks.  They have lessened in intensity and frequency as the sun moved along the sky.  Though she is in the PICU she is stable.  She is not on the ventilator or any other life sustaining device.

Tomorrow we should know more than we know right now so we will update this site as soon as we can.  Thank you for your prayers and offering of support.  Once we stop going 100 mph we will return all the calls and make time for our friends.

 - MFM

April 3, 2006

Well, its becoming routine that whenever we need to take Ellie Kate to the Hospital... its on the weekend.  This past weekend (March 31-April 2) Ellie Kate started throwing up and her stomach became distended.  We later learned that she had "an incredible amount" of air in her intestines creating gas and extreme discomfort.

All that to say, Ellie Kate is back in Baptist Hospital undergoing testing and evaluation.  The good news is that she is not in the PICU and is not critical or life-threatening.  She will undergo some GI tests today.  They have taken away her medicine and food and that has helped the problem.  They will re-introduce her food and medicine slowly to see if she can handle them.  We will post an update when we know more.

The short-version:  EKM is in the hospital with a GI problem and will undergo some testing.

 - MFM

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

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!

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

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.

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

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

February 12, 2006

Recent McLaughlin Pics 

We hope you enjoy these pics of our family.  They are from Christmas up until just last week, including the spaghetti dinner which was hosted by Oklahoma City University.  Thank you for continuing to pray for us.  We love and appreciate each of you!

God is faithful!

Mike, Ryan, Conner, and Ellie Kate 

http://pg.photos.yahoo.com/ph/mwmcl/album?.dir=/dcfd&.src=ph&.tok=phXZnZEB9xrfXVjE

February 9, 2006

We cannot begin to thank you enough for your love, support and prayers.  Our sincerest thanks to each one who attended the spaghetti dinner last week.  It was an amazing turnout, and we were truly blessed.

This week has been eventful yet again, as we met with the Pediatrician, home care nurses, Geneticists, and the Neurologist here in OKC.  The doctors are all very encouraged at Ellie Kate's current condition.  Not many babies with NKH do very well, so Ellie is astounding doctors in that regard.  Of course, we know it is because God is at work.  We are still praying for complete healing and trusting God to prepare us for the future that lies ahead.  Sometimes the possible outcomes are frightening and disheartening, yet we know God is able to do above and beyond what we can imagine!

Today Conner was diagnosed with Rotavirus - something that is common among little ones but is very contagious.  Because it is so contagious, and because Ellie Kate's immune system is already compromised, we must keep her away from Conner for 4-5 days (and from me since I have been directly exposed to the virus).  So, once again our family is separated.

Please pray for healing over our family.  God is faithful, and I know He does indeed have a purpose for all of this, although it is hard to understand that at times.  We love you all and appreciate you!

February 3, 2006

First of all, on behalf of Ryan, let me thank each and everyone of you that became apart of the spaghetti dinner.  It was more fun than I could have imagined.  It was a blessing to see so many people.

Ellie Kate will get evaluated by a geneticist and neurologist on Monday.  From that evaluation and the subsequent evaluations by those doctors, we will begin to develop a treatment plan for Ellie Kate.  Her medication will be adjusted, our doctors visits will be determined and probably what types of procedures and tests will be needed.

When we brought Ellie Kate home from Houston, we were told to watch for some things that were associated with her disorder.  We are pleased to report that we have not seen any of the red-flags.  No seizures, no major complications (outside of RSV, which was unrelated) and no major-developmental issues.  We know that we are not out of the woods yet but we are encouraged as each day passes.

Ellie weighs over 9 pounds and is beginning to hold her head up on her own.  And I forgot to mention that she is extremely feisty.

She has me 100% wrapped around her finger.

-MFM

January 29, 2006

 Once again, we are home! Ellie Kate was discharged from Baptist on Friday. It was our first weekend home with her since she was born. We've been settling in as a family and getting used to having two little ones! It is such a blessing to have Ellie Kate home.

This week we start meeting with doctors and therapists, and we will hopefully find out more about what we will be facing in the future. Also, Mike and I have been asked to send our DNA to a special lab in Denver, where Ellie's DNA is being studied. It appears that she is somewhat of a mystery even to the genetic experts!

We love you and truly appreciate your love, prayers and support. God is so very faithful. We will post more as things unfold. We hope to see you Tuesday at Oklahoma City University for the spaghetti dinner!

Love,

Ryan

January 24, 2006

Ellie Kate is still in the PICU at Baptist. But, she is doing quite well! As you know, she is now off the ventilator. They are still observing her though and will probably keep her there a few more days.

Personally, I am overwhelmed at the thought of the treatments we are facing - speech therapy, occupational therapy, physical therapy, medication throughout the day, possible seizures, etc. I know without a doubt that God is the Creator of our precious daughter, and that He has orchestrated all of this for a purpose. But, like I said, planning for the future (both immediate and long term) has become mentally, spiritually and emotionally exhaustive.

We would consider it an honor if you would join us in praying for the following:

1. Ellie's complete healing from RSV and protection against it in the future

2. Continued healing and restoration of Ellie Kate's genetic make-up

3. Continued healing and restoration of her brain and it's functions

4. Wisdom for the doctors and that we would be connected to the appropriate doctors

5. That Ellie Kate would continue to eat strong and well

6. Patience and grace as we face this tough road ahead

We love you all so very much and appreciate your encouragement. As you may have heard, Oklahoma City University is hosting a fundraising meal for us next Tuesday evening, January 31st. The dinner itself is from 5-7pm and everyone is invited! It is $5 all you can eat spaghetti and all proceeds will go toward Ellie's cause. A few of you have asked for directions to the dinner. It will be held in the cafeteria located in the CQ Smith Student Faculty Center on the campus of OCU. OCU is located at 23rd and Blackwelder. For directions on how to get to OCU, a campus map, and other campus information, you can click on http://www.tgimatocu.com/visit/. From there you will be able to find all the information you need located on the left hand side of the screen (just click on the item that you need). This is an amazing thing for a University to do, and I am truly humbled that they would go to these great lengths for us!

We love you all and will keep you posted as things progress.

Ryan

January 23, 2006

We found out yesterday that Ellie Kate has RSV. This is bad because it is a fairly serious virus in newborns and infants (and that elderly). We took her in at a good time because the doctors feel that she is doing really well and responding positively to her treatment. She is breathing above her ventilator consistently and should be off the ventilator either today or tomorrow if I had to guess.

Ellie Kate having RSV is a good thing because we didn't want her breathing problem to be a side-effect or a new symptom of her genetic/metabolic disorder. NKH isn't accompanied by breathing problems so it really concerned us and the doctors that she developed breathing issues.

She is doing well and looks much better this morning than Friday. Being an asthmatic, I realized one of my biggest fears by watching her struggle to get good air.

Ryan and Conner are doing quite well. It doesn't appear that RSV is effecting them or me but we are doubling our vitamins, water intake,, hand washing and clothes washing. We are also warning everyone that dares enter the PICU that RSV is highly contagious and to enter at your own peril. But if you have a fairly strong immune system then it presents itself like a strong cold.

Thanks for the prayers, hugs, kind words and cards... we appreciate all of them. And we promise to post some more pictures soon after she is once again extubated.

-MFM

January 20, 2006

EK has been admitted once again to Baptist PICU. They have put her back on the ventilator, but are allowing her to do most of the work breathing. Since she was having labored breathing this morning they wanted to be able to monitor it and stabilize it, thus back on the vent. She isn't being drugged, or in a semi-coma like she was before. She does have a central line once again and is now being fed through a GI tube. But, they are letting her have breast milk. We aren't sure if this is a virus or a product of her NKH (metabolic disorder). They are doing some tests (of course!), and we will hopefully know more soon. Problem is, she is once again being admitted on a weekend, and not much goes on in hospitals during the weekends!

God is still faithful. We continue to believe He is doing great things in and through baby Ellie - we just can't see the big picture at this time, but our trust is in Him. Please just pray that we can figure all of this out. We long for normalcy!

We love you all and will give another update when possible.

Ryan and Mike

January 20, 2006

Ellie Kate is back in the emergency room today. We noticed some wheezing in her breathing yesterday but thought it was isolated to her nostrils. Today when we woke her up at 7AM for her 7AM breakfast, we noticed her breathing was very labored.

She is at the Baptist ER getting an IV, taking some breathing treatments and getting a chest X-Ray. From all the preliminary reports, it doesn't look like the wheezing is in her lungs (a relief for someone who knows about asthma)

We'll continue to update everyone, as we know more.

-MFM

January 17, 2006

"You are my witnesses, and my servant whom I have chosen, in order that you may know and believe Me, and understand that I am He. Before me there was no God formed, and there will be none after Me. I, even I am the the Lord; and there is no Savior besides Me . . . there is none who can deliver out of My hand; I act and who can reverse it? . . . Behold, I will do something new, NOW it will spring forth; Will you not be aware of it? I will even make a roadway in the wilderness and rivers in the desert. The people I formed for Myself will declare my praise."

Isaiah 43:10-11, 13, 19

It is with a humble heart that I write to you tonight from our home in OKC. That's right - we are home! Ellie Kate was released from the hospital on Sunday evening, and we arrived home late last night.

The verses you read above tell the story of this journey for us. God formed little Ellie with a divine purpose. He chose her and He chose us to go through this so that we would know the power of His might. He still works in wondrous and mysterious ways! He is alive. He has done something new in our lives and in the life of our daughter. We are aware of it and we give God all of the glory! What seemed impossible at one time, has now become reality and God has done it all - like making rivers in the desert.

Ellie Kate is doing remarkably well! As you know, she has been diagnosed with a very rare metabolic disorder called Non-Ketotic Hyperglycinemia. This is a very serious thing, but we are encouraged! Our daughter is moving, acting and sounding like a normal five week old - something that at one time we thought was going to be impossible! For the time being (and into the seeable future) Ellie will be visiting doctors often, including her pediatrician, Metabolic Geneticist and Pediatric Neurologist. She will probably also see an Occupational Therapist to make sure she stays on track developmentally after all of the trauma that has occurred. She is on a tight regiment of various medications. But, the doctors and specialists are encouraged at her performance, and at how much she has changed in her short little life. We know that is because God has touched her!

We want to thank you again for all of your prayers, your gifts and your love. This journey is by no means over, and we appreciate your support in the future as well as we continue to learn more through these trials about our Lord Jesus. Don't worry - we will keep this website and keep you up to date. We have a long road ahead of us! One thing we have learned is the importance of the Kingdom of God here on earth - that means YOU and we need you in our lives.

So many of you ask what you can do for us. Right now the most important thing is just knowing that you all are here for us in various ways. Please, keep that up! Also, there will be an opportunity for you to come and celebrate with us at a dinner which is being put on by Oklahoma City University, where I work. The OCU family is amazing, and they are hosting an all-you-can-eat spaghetti dinner for us on Tuesday, January 31st. The dinner will be located in the cafeteria on the OCU campus, which is located at 2501 N. Blackwelder in OKC. The event is come and go from 5-7pm, and the cost is $5 - all proceeds will go to a fund for Ellie Kate's medical expenses. This is such a kind gesture, and we are truly humbled. Mike and I are considering this a "celebration dinner", as I mentioned before and we would love for you to come and celebrate with us. For more information, you can contact our dear friend Saundra Ptak at 208-5050, or by email at sptak@okcu.edu.

We love you all. Please continue to pray for COMPLETE healing and restoration - we know that God is able.

He is faithful!

Ryan

NKH

God is so good! Mike and I are so glad to finally have a diagnosis. We had feared (and prepared for) the worst case scenario. Although NKH can be very debilitating, there are meds that can at least partially treat it. And, Ellie Kate was diagnosed earlier than any other in the history of the hospital. Altogether, this hospital has treated 6 children with this disorder - only one other baby who is two and was just recently diagnosed. Currently, two other children are being treated for NKH, and their symptoms and problems vary. Ellie Kate's presentation is much calmer than any of the other two patients they are currently treating.

If you look this up online, it can be a scary thing. But, the doctors here have been extremely positive - since we have an early diagnosis, can now treat it early, and because Ellie Kate is doing so well. She could lead a completely normal life, and of course, that is what we would choose for her. But, there could be some disabilities as well that could arise in the future. God is so faithful, and we trust Him to prepare us for any road we may have to go down. For now, we will be in close contact with a metabolic specialist and pediatric neurologist in OKC - both whom were recommended by the specialists here.

Today, Ellie Kate is doing great! If you had seen her there at Baptist Hospital, you won't recognize her now - I guarantee it! God has performed a miracle, and I am convinced He isn't through! Ellie is breastfeeding, crying, moving, trying to focus, responding to pain, breathing on her own - all things she wasn't doing back in OKC. I give God all the glory for this!

This morning she had a follow up EEG (brain scan) and some urology tests as well. The doctors assure us that we will be going home soon, now that we have a diagnosis and now that we won't have to do the biopsies. Isn't that a huge praise?! Again, I give God all of the glory.

We have been so blessed by all of you. I was loved on this week by my dear friend Debbie Stroupe who flew all the way from Arizona to be by my side! So many of you have prayed, stopped by, called, emailed, sent cards, etc. Each of you have been a blessing to our families.

Whenever we have a for sure departure date, we'll let you know. THANK YOU for continuing to pray for Ellie Kate. God HAS healed her and IS healing her so that we will all know how powerful He is. He still heals people today, and He is more powerful than we could ever imagine.

All our love,

Ryan

Isaiah 43

A Diagnosis

We are about 95% sure that we have a diagnosis. It is Nonketotic Hyperglycinemia (NKH). The Medical field is still learning about this disorder and are still conducting research into not only its effects on the body but also possible treatments.

Neither Ryan or I know much about this disorder outside of the fact that it is pretty hard to spell and is a big-time winner in a scrabble challenge. If you want to read all about the details of this then go ahead and google it. Be warned that most medical literature is necessarily on the negative side.

The good news is we have a diagnosis and we'll begin to create a tailored treatment plan just for EKM.

That is all for now, good night now.

MFM

Level Two!

Another week in Houston! Mike, Conner and I had a blast this past weekend. Stan and Jayme came down too, and we all really enjoyed spending time together as a family. It was very encouraging to me to see them all - especially my two handsome boys!

Today was a big day, yet uneventful at the same time. Here at TCH, there are two levels of the NICU. Level three is the most critical and level two is a step down. Level three patients are quite severe and require one on one attention from doctors and nurses. Level two is for patients who are holding their own, so to speak. Well, today Ellie Kate was moved to Level two!! This was a big step, seeing that she is stable and doesn't need the most intensive of "intensive care". We praise God for the changes He has made in Ellie Kate and for allowing her to come this far. It is a miracle.

Also today, Ellie drank her first bottle. She did quite well! She drank 3 oz in 15 mins, which is great. I was very proud:). Occupational Therapy will be administering her bottles for the next few days to make sure she isn't aspirating at all.

Ellie Kate has been hospitalized for one month today. It all feels like a blurr to us, with many ups and many downs. God has and continues to be so very faithful to our family. Each of you are a huge part of why we can handle this situation! Thank you for your emails, cards, phone calls, etc. They lift us up more than you will ever know.

Right now we just are waiting for those test results to come back in. Yes, more waiting! If you feel led to do so, please pray for the following:

1. That Ellie Kate will continue to feed well on a bottle and will not have any aspirations

2. That we will have a diagnosis that is clear to the doctors

3. That the diagnosis we recieve will have a treatment

4. That God will continue to heal and restore Ellie's little brain.

We love each of you and will post more as it develops!

Ryan

The Weekend

Not too much happens at the Texas Children's hospital over the weekend. We meet with a few doctors and they told us that they will begin some new procedures on Monday and run a few more tests as well.

Every doctor that we see comments on how beautiful she is and how much improvement they've seen in the last few days. If only the Texas doctors could have seen her in early December... they would realize that they are seeing a miracle being walked out.

Conner was down here over the weekend with the paternal grand-parents (Stan and Jayme McLaughlin). Conner flew with his daddy (he did quite well)... he rode his first train (a light rail, and he loved it) and he will see Ellie Kate for the first time tonight.

Thank you all, my brother (Drew McLaughlin) has been keeping me updated with all the donations to the website that he and I created... and all I can say is that I am overwhelmed. We’d love to write each and every one of you a thank you note so please include your mailing address if you like… if you want to remain anonymous, that is just as well.

We’ll have much to update this week so stay tuned.

- MFM

Visitors!

Today Mike and Conner come in! I am so incredibly excited to see them both. Mike's parents, Stan and Jayme are also coming in. I'm happy that we will be able to spend time together as a family this weekend. What a blessing!

Yesterday was jam-packed again. She had an EKG, and EEG and an ultrasound of her intestines and liver. Also, she had another spinal tap, and they have promised me that this will be the last one (she had two in OKC)!! Of course, the usual teams of doctors came around as well. As Mike said in his earlier post, we are just waiting. Some of the results will take a week or so to come in, and some will be in by Monday or maybe even today. We will be sure to keep you posted.

Although the doctors say there are signs of brain damage, you wouldn't know by looking at Ellie Kate! She looks so much more normal now. I took a few pics this morning of our beautiful girl, and we will post those later today. We praise God for the progress she has made, and we are asking that the progress will continue. We are also asking God to heal and restore her little brain. Both of those things are weighing heavy on our hearts, and we welcome you to join us in praying for them specifically!

God's family is truly amazing, and I am so touched by how the Kingdom of God works here on earth. We are being loved on here in Houston by Believers we don't even know, or that are friends of friends, etc. So, God is very faithful.

We love you all and will post more later!

Ryan

What we know....

We'll try to have some pictures to post. So much about Ellie has changed in the last few days that we need to get some pictures to tell the story.

She has been off of the vent for a few days and is showing no ill-signs from it. Also, the doctor will remove Ellie's main-line catheter (the IV that is connected to a major blood vessel close to her heart.) They feel that it has served its purpose and should be removed.

When we get some definitive answers to some of the tests, we'll forward them along.

What we know thus far: Her MRI was similar to the others performed in OKC... her levels are similar to the levels taken previously in OKC... She is making more and more normal-baby movements.

The road to recovery is slow but she is gaining momentum... inch by inch.

- Michael Freakin McLaughlin (MFM)

Off the Ventilator!

GOD IS GOOD! As you may have heard, Ellie Kate is now off the ventilator. This morning, I was there as the Neonatal doctors did their rounds. They gave me a summary and told me they would try to take her off the vent tonight or tomorrow. I was excited. As they were standing there conversing, I changed Ellie's diaper and she started to move. Then I heard a noise coming from her mouth (which isn't supposed to happen when a child is on the vent). I told the doctors to come over, and guess what? Ellie Kate had worked that tube right out! She was ready to be off of the ventilator. The doctors were excited and decided to go ahead and see if she could remain off. As of tonight, Ellie was still breathing way above the vent with saturation levels in the high 90's to 100 (which is really great). I am thrilled but nervous too! I was able to hear her cry and hold her without the big tubes - it was wonderful.

Today was very busy, not only because of Ellie Kate extibating herself:). I met with the neuroligists, the cardiologists, the geneticists, physical therapy, occupational therapy, respitory therapists, the genetics team, and the neonatal doctors (which are fabulous). My head is swimming with information, and there are still very many things up in the air. Those who know me know I like to list things out for clarity, so here is some info on where we are now, in my style:) . . .

1. No diagnosis yet, but we are moving forward

2. Doctors still think this is some sort of metabolic disorder

3. The MRI taken yesterday showed some small brain damage. This is caused by the possible metabolic disorder. More evaluations of the MRI and MRS will be done tomorrow. We don't yet know what all has been affected, and if this disorder will cause progressive damage (will continue to damage her brain), or if it is static (which means all the damage has been done and there is

no chance of reoccurrence).

4. Even since arriving Ellie Kate has improved in her movements, her breathing, her eye movement, etc. She is fully awake! The doctors think this is very encouraging and is a positive sign that the damage in the brain may very well be done and over with.

5. They are putting Ellie on regular formula - just lactose free! This too is a big step. If she does well on that then it is off to try mom's milk!

If you feel led to do so, please pray for those specific things!!

Every doctor that I met with today will be evaluating her MRI and MRS. Once that is done, they will all consult with one another about what to do next. This could very well include a skin biopsy, which would take about six weeks for results to come in. The geneticists won't do a muscle biopsy unless they think it is absolutely essential. And if they do decide to do one, it will be in another six months or so, which means they would send us home at some point to come back in six months.

As for me, I am hanging in there here by myself - really and truly! I think those few years I spent "on the road" with work were good training. I appreciate every phone call and email - I am blessed with amazing friends! Please don't be offended if I don't call you back. My phone doesn't get good reception in the hospital, which is where I stay during the day. And, like today, each day is full and busy! But, keep the messages coming - they are such an encouragement. Also, God has provided me a much safer and more convenient place to stay as well - the Holiday Inn across the street from the hospital. He truly is Jehovah Jireh, My Provider!

God is faithful and true. His promises in Isaiah 43 are so endearing to me at this time. Thank you all for lifting up our family before the Lord! Your stories about how the Holy Spirit is prompting you are amazing. Thank you for standing in the gap for our daughter and for interceding on her behalf!

Ryan

Quick Update

Just a quick update... Ryan will add more later.

Ellie has passed a few milestones today. She was taken off of the ventilator. Her breathing is strong enough that she doesn't require the ironlung. Also, she started crying today and Ryan said it was really cute. I'm sure she will add more to that effect.

As of this point, I don't know the results of the tests... but many more will come. It is a puzzle with only some of the pieces. Once we get more of the pieces, we should have a better idea.

Mike 

On My Own

Today is my first official day here on my own! I know Mike's heart was hurting as he left Ellie Kate and I today. But, we know that there are things for him to do in OKC - including taking care of precious Conner, who is being a trooper, by the way.

At noon today they took Ellie for an MRI and MRS. These initial tests will tell the doctors where to go next. She remains very stable, and continues to get more and more alert. She also is breathing above the vent 99.9% of the time! She just needs to get a little more consistent.

Basically, we are waiting again. But, the doctors are great and the nurses are amazing, and all are eager (like us) to start treating Ellie Kate as soon as possible!

Thank you so much for your continued prayers and support for our family. I can't tell you how loved we feel and each of you is a part of that! We love you all so very much. As soon as we get any word, or any changes occur, we will be sure to post.

Ryan

Isaiah 43 

Houston Arrival

We arrived here in Houston on the 30th. I arrived a few hours before Ellie and Ryan. This allowed me to fill out some paper work and find the most comfortable chair in the waiting room. Texas Children's Hospital had a reputation for being not only one of the top children's hospital in the country but the world... and based on our initial encounters, it is well deserved. We met some of the doctors and a few nurses. They have been unbelievably friendly and courteous to us.

We don't have any updates to Ellie's condition. The doctors are pouring over her paper work from OKC. They will do some initial testing and ask us some questions to see what sort of game plan they want to create. An MRI and an MRS will be done on Tuesday. Most of the tests that will be performed in the next few days will be to see what has changed since the tests were done in OKC.

We'll try to update this website daily. Thanks for the prayers and support.

Mike