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