Ethan's Remarkable Progress

Since he started on the anti-seizure medications our little Ethan has made an incredible transition. While he still is a bit behind developmentally where it comes to visually locking in and tracking, he is acting more and more like a happy little guy who's "firing on all cylinders" so to speak.

Our recent trip to Kansas for my mom's birthday was a joy as we had opportunity to observe the new Ethan at play and interacting. He seems much happier, more active and just in better spirits than our previous visit or when he was out here to see the Grand Canyon...... oh, and maybe us too.



Is that not super cool?

Praise God! .......... Again..........

Here's the scoop on Ethan. The sutures in the forehead have fused, but that's OK because they can fuse any time in the first year. The other sutures are all just fine. Bottom line: No surgery needed!

What we think happened is that Ethan's head was in the 70th percentile for newborns shortly after he was born. It is now in the 5th percentile for seven month olds. Ordinarily this should send up warning flags, which is precisely what happened. What the medical folks failed to take into consideration is that he was in the 70th percentile because his head was swollen. They also failed to consider his original due date rather than his birth date. Factor out the extra month and he's in the 35th percentile for his gestational plus birth age which is OK.

Or maybe God just healed him........

Either way. Praise God!

They also took the little guy to see the pediatric opthamologist. He doesn't think the lack of focus problem is mechanical but developmental/neurological in nature. So, the plan is to use stimulation to help Ethan focus. Bright mobiles and toys along with toys that have blinking lights but no sound. They want him turning his gaze toward the lights and not toward the sound. Oh, and they'll be sure and avoid strobing (fast flash) lights so as not to trigger a seizure.

Here's how to continue praying:

• Pray that the use of stimulation will help Ethan to develop and be able to focus
• Pray that the cause of the seizures will correct itself and he can be removed from the need for medication
• Pray that Sean and Ash will continue to rest in the Lord and grow in faith
• Pray in praise and thanksgiving for this good news

Thanks for your continued prayers. I know that Ethan will certainly appreciate it when he's old enough to understand and we certainly appreciate it now.

May God grant you his richest blessings.

Need More Prayer

Last week we heard that Ethan was rolling his eyes up, then to the right followed by a grunt. I mentioned that it sounded like a small seizure (always the same sequence indicating that the same part of the brain was being affected) and urged the kids to get Ethan in to see the neurologist. The earliest they could get them in was over a month off. Fortunately Ethan got in to see him much sooner. That's good since the seizures were initially happening every morning but started happening during the day as well.

Today at lunch I got a call from my wife telling me about the results of the visit to the doctor. Following are the things the doctor related to Sean and Ashli and the object of renewed prayers on Ethan's behalf:

1. According to the neurologist, Ethan's head has stopped growing. The next step will be to see if the skull fissures have knit together already. If so, there will be surgery needed to allow the skull to expand. It's my guess that this is what they'll find (although it is my prayer that it's something "easier"). If the brain is continuing to grow and the skull is not expanding the pressure on the brain could be part of what is triggering the seizures. That's not the doctor's assessment (that I know of) but my own speculation.
2. The doctor is going to put Ethan on medication for the seizures and expects that he will be on the meds for two years. That would indicate to me that the doctor thinks the seizures are unrelated to the growth issues which kind of counters my speculation above.
3. Please pray for Sean and Ashli as they had settled in to thinking that all they needed to do was wait while Ethan caught up and now there seems to be an additional setback.

I said "seems to be" because I believe that when we serve God there are no setbacks. All things work together for good to those who love God and are called according to his purpose. This situation has already been through the hands of God and he could have prevented it had he chosen to. There is something better to be had by dealing with this current situation. Do I know what that is? No. Not at all. But I have seen God take what seems to be bad and turn it into something you wouldn't necessarily want to go through again but you also wouldn't want to give up what was gained in the process.

Let's pray for God to heal Ethan but at the same time thank him for whatever good he is working out through this situation.

Season Premier of How Is Ethan?

Sorry to have left so many of you hanging since February. Since then we have been back to see Ethan and, just a couple of weeks ago, Ethan came out to see us. Oh, yeah..... his parents were there both times and we also got to see them.

Developmentally he's a month or two behind, but the doctors keep reminding his mom and dad that he had to finish development outside the womb that most babies get to finish before having to deal with the outside world. If we were to plot his progress from his original due date his development would be more in the "normal" range. Well, who wants to be normal?

When they were here to visit us we all went to the Grand Canyon and Ethan got to meet his cousin Aden who is twice as old as he is (that gap will shrink rapidly). I'll post some newer pictures this week some time (as I get time).

Neurologist's Latest Findings

Well, it's been a couple of weeks and no updates. That's a good thing. It means that Ethan hasn't experienced any downturns, that he's doing well at this point.

Yesterday Ethan was seen by the Neurologist and he said that the fluid was no longer building up in the ventricles of the brain. In fact, they were decreasing. The size of the ventricles are still larger than normal, but they have gotten smaller since the last time they did a sonongram and the doctor feels that he can go longer between visits. Well, praise God from whom ALL blessings flow. He has been our rock and our fortress through all of this and he continues to show himself strong in our behalf.

Weekend Update

Friday came and went and Ethan was not allowed to go home. An earlier sonogram showed that the fluid buildup in one of the ventricles of the brain had subsided (praise God!), but that the other one was still filling. The sonogram also found a cyst in the brain. The doctors want to recheck the cyst in three weeks to see what it does (grow, shrink, disappear....... I vote for the last one).

So, a mixed bag as far as news - some good, some not so good. However, the best news is that Friday is gone and now it's Saturday and Saturday apparently means that Ethan was able to be released from the hospital today and is going home! Yes, go ahead, shout, laugh, cry..... I'll wait. But whatever else you do, thank God for his continued care of little Ethan through what could have been a far worse ordeal.

Sean has promised to email some pictures and I'll be sure and post them here. Hmmmmm. This also means that the Paparazzo will get to visit soon and then I'll get to take some photos..... I can't wait.


*** Update ***

As you can see. The pictures are here.

Specifics For Continued Prayer

Sean tells me that they've started "ad-lib" feeding rather than scheduled feeding times. They think that perhaps Ethan will eat better if they wait until he's actually hungry (imagine that!). Since they've started the new routine Ethan has lost a bit of weight, so they are mixing formula in with mom's milk to add calories.

Here's the deal. If Ethan continues to eat well under the new schedule AND he starts to pick up some weight they will let him go home. The soonest this might happen is Friday! That leads us directly into the specifics for prayer: Please pray that Ethan will continue to eat (or even become a more accomplished eater, like his Paparazzo) and that he will gain a bit of weight in the next few days.

We want you to pray for this new possibility, but we'd ask that you continue to pray for Ethan's health and recovery overall. The problem with needing to drain CSF has not gone away, so even if he goes home this Friday, Ethan will have to be brought back in for sonograms, measurements and a reoccurance of the needle insertion between brain hemispheres. While we will be grateful if the Lord allows the weight gain our ultimate hope and prayer for Ethan is that he will go home completely healed and not have to undergo additional procedures (although I'm certain the doctors will want to follow-up vigorously to make sure that he is doing well).

Once again, we can't adequately express our appreciation for the love and prayers on behalf of Ethan. Thank you and may God bestow his richest blessings upon you.

Ethan's Latest Procedure

I spoke with Sean today. Last night at about 11PM, the neurosurgeon inserted a needle into the soft spot on top of Ethan's head and withdrew some spinal fluid. He says that they'll likely have to do it again. This time they were able to draw fluid from near the top of the brain but next time they may have to go deeper.

Please continue to pray for Ethan and for both Sean and Ashli. Having a child in the hospital for an extended stay really wears you down. I imagine that it's compounded when you've not ever been able to take that child home with you. Pray that God gives them strength to endure and that they will be mindful of the fact that God is likely using them through this to build up his kingdom. May they persevere in their faith and may the manifest love and peace of God be evidenced in and through them.

What's Next For Ethan

I talked with Sean this morning. The fluid buildup in the vertricles of the brain continues and it appears that Ethan will be scheduled for a spinal tap to drain fluid.

Cerebrospinal fluid (CSF) is made, as I recall, in the ventricles and circulates around the brain and spinal column. There is some debate about all of the functions of CSF, but everyone agrees it's pretty important stuff. Normally CSF is absorbed and replenished daily. I don't know if Ethan is producing more than is normal or is absorbing less than is normal, but the end result is that there is more fluid than the system can hold. If allowed to continue unchecked the fluid will compress the brain tissue and can have wildly varying effects on the brain and its functions. If Ethan isn't absorbing at the correct rate there is some evidence that CSF removes impurities from the cerebrospinal system in much the same way that urine removes impurities from the body as a whole.

On the praise side, if not for this complication we think that Ethan would finally be allowed to go home since he has finally taken a little more than two ounces from the bottle on his own.

Pray that Ethan's CSF production and replenishment will even out and that the need for additional intervention will not be necessary and that he will be able to go home soon.

Update From the Neurologist

Ethan's Neurologist spoke to Ashli last Wednesday night (I thought I posted this then, but it was still languishing in the draft state today) and while the problem in the ventricles of the brain is of concern he feels that there is no immediate threat but they will continue to monitor the condition. One of the things that they will be looking for is additional sleepiness and lethargy. The doctor was actually encouraged when Ashli asked him if Ethan's staying awake for a long time (for babies) was indicative of anything. He says that being awake and alert is the opposite of what they would observe if there was damage in these areas of the brain.

Praise him from whom all blessings flow.....

Sean wanted me to post this picture:

A New Turn of Events

While at lunch today I received word that Ethan's condition has taken a turn. There is now swelling in both the left and right ventricles of the brain. We will have more information after the Neurologist talks with Sean and Ashli tonight.

I know that this comes as a blow to Sean and Ashli as they were of the mindset that Ethan only needed to learn to suckle properly to come home and now this..... Please pray for them as well as for Ethan and the staff and physicians that are caring for him.

Some things to remember:

1. God is still God and as such is still able.
2. God didn't look down from his lofty perch today and say, "What? When did this happen? Why didn't anyone let me know?"
3. God doesn't make mistakes.
4. God loves Ethan, Sean and Ashli.
5. God is even now standing at the ready to pour out his grace upon Sean and Ashli.

I could go on but I think you get the idea. Trust God in all things.

Pray that the healing virtue from the great physician might be poured out upon little Ethan. Pray that God would comfort and strengthen Sean and Ashli.

Once again, thank you for your intercession on behalf of our family.

Not Much New

Ethan continues to improve but still isn't taking two ounces on his own. As a result, he's still in the hospital. Also, he seems to do OK with a bottle, but cries when nursed.

We're so thankful that God has brought him through the bigger events that could have been very dangerous, so this seems pretty minor in comparison. I know that Sean and Ashli would really like to take Ethan home, so let's continue to pray that Ethan will progress quickly to take 2 ounces on his own and that he would find comfort in nursing. Pray that he will be able to go home with mom and dad very soon.