Day 10

Today is Day 10 of Luke being on his new med, Vigabatrin. Today is only Day 1 of him being on the full dose. We had to gradually build up to 1000 mg per day. So far, we don't see any changes. This past week, we've still been seeing the startle jerks throughout the day here and there. Last night Luke had a "cluster", meaning he did the jerks over and over, repeatedly about 30 times in about 2 or 3 minutes. It might have been more..I lost count. It was a lot. It's very sad to watch.

We head back to St. Louis Children's on Friday. Luke will have another EEG and a spinal tab, as well as some blood work.

Please continue to pray for this medicine to work, for God's healing and for these seizures to stop.

Despite the seizures, here are some ways Luke is improving:

* He is doing much better during tummy time. Even though he is is 1 yr. old, he never has learned to hold his head up very well while on his tummy. This week, he has really improved and seems to be getting much stronger in his neck/shoulder area.

* When holding an object in each hand, Luke is consistently banging the objects together. (You never knew this was so important, did you?! Believe it or not, this is a developmental step for babies and his therapists have been trying to get him to do this for a long time...so we're celebrating!)

*Luke is still doing well sitting up all by himself. He still can't get himself to that position on his own, but he is trying! And he fusses until you help him get up. He's not too content to just lay on the floor anymore.

* He is doing well bearing weight on his legs and can also bear weight on his arms and knees in a crawling position.

So thankful that Luke seems to be retaining learned skills and not regressing too much while these spasms are going on. Can't wait till they stop.

Vigabatrin

Well, as expected Luke's new med, Vigabatrin came in the mail this week. We started him on his first dose on Sunday. He has to gradually work up to a full dose. Right now he's taking 25% of a full dose. The medicine is very easy to give....just powder that we add to his bottle. We are still seeing the spasms. We'll know it's working when the spasms stop and then the EEG reads normal. If the med is going to work, they say it'll work soon. And by "soon", I think they mean within a month or two. This med is only for the purpose of stopping the spasms (which look like small startles). From what I understand, that is just the first step. And then we'll fight more/different battles from there.

Heard from our wonderful doctors in St. Louis. Dr. Guilliams called at 9 pm one evening, "just to check in on Luke". That makes a heart happy....to get a call from a doctor 3 hours away who cares enough just to check in with you! We will go back to St. Louis on Nov. 13th. They'll be doing a spinal tap to run more test, taking blood for lab tests and doing another EEG. We'll make another trip there the day before Thanksgiving for another check up.

Andrew and I are doing ok. When I talk to people about the whole thing, inevitably the conversation turns to all of the obstacles Luke has already come through. Everyone can see God's hand on his life....not only in the fact that he's come through multiple surgeries, been healed of illnesses and miraculously developed skills some thought he never would, but also just in the ways God has directed our steps and led us to the right diagnosis and the right treatment. Looking back on what God has done brings a lot peace. It makes it easier to trust that God is still the same God and he won't leave us now. Still, at certain moments, and sometimes unexpectedly, we are gripped by fear....fear of the unknown, fear of the seizures returning, fear of what life will look like for Luke, fear of not being strong enough to walk this road.

We do know this--We'll never be able to see tomorrow until it gets here and tomorrow may bring something completely unexpected. I mean...that's hardly a new revelation. If you've lived longer than a day, you know that sometimes what you think will happen, doesn't and what you never imagined would happen, does. And I guess when it comes down to it, what would faith be anyway if we had all the answers...no faith at all!

A friend of ours, Becky Rhoades, recently sent a note to our inbox and all it said was "I prayed for you this morning and clearly felt impressed to tell you, 'God is with you'. That's it...just remember and remind yourselves often, 'God is with us'".

So simple....but what more could you ask for really? Yes, I'm afraid, yes, I feel weak, yes, I don't know what tomorrow will bring. But whatever it brings, God will be with me.

A new diagnosis

It has been an exhausting couple of days for us, but we would like to attempt to share with you some of what we learned from our doctors in St. Louis today. Please forgive us if this reads like a medical journal. Don’t have much energy to write more than just the facts at the moment.

The diagnosis: Infantile Spasms (IS) -We arrived in St. Louis yesterday. At the beginning of our appointment, we explained to the doctors the kinds of abnormal movements we were seeing in Luke. (started seeing these early September) These startle jerks often occur when he is waking up from a nap and seem to come in clusters. Our neurologist here in Springfield had read Luke’s recent EEG and ruled out the possibility of infantile spasms. He really couldn’t give us a good reason for why Luke would have these startles though. While we felt a huge relief when we heard that it wasn’t IS, we continued to feel very uneasy about the situation since there was no explanation and the spasms were getting worse. As soon as we explained all of this to our docs in St. Louis yesterday, they immediately suspected that Luke did in fact have IS.

They asked for us to stay the night and come back to St. Louis Children’s Hospital this morning for a repeat EEG, which would be their final confirmation. This morning, Luke was hooked up to the EEG machine for about 45 minutes. Shortly after, the docs came in, gave the diagnosis of IS and immediately started talking to us about possible treatments, emphasizing that time is of essence and treatment needed to start as soon as possible. (pretty much today)

The cause: Luke is diagnosed with symptomatic IS. Most likely, his spasms are caused by a pre-existing brain injury….in his case, the brain bleed at brith.

Often IS is a genetic disorder. Since we have no history of epilepsy in our family, and since Luke has an identical twin brother without the disorder, he is quite a quandary. Washington University is a research hospital and currently neurologists there are studying the genetic component of Infantile Spasms. We have released Luke’s records to be used for research, agreed to genetic testing, and will allow them to run tests on Caleb in the future as well, as this data could greatly help their research efforts.

Treatment: There are a couple of options. We have chosen to try the drug Vigabatrin (Sabril) first. This med has been used to treat Infantile Spasms in Europe for about 20 years but has never been approved by the FDA….until 2 months ago! It is very strictly regulated and Luke will be placed on a national registry and monitored very closely. The most serious side effect of this drug is loss of vision. Research shows that vision loss typically occurs with long term use and they don’t plan to keep Luke on the med for more than a few months. Luke will have to closely watched by his eye doctor here in town while he is on this med. The drug will be shipped to our home within a week.

We will continue to increase his anti-seizure med, Topamax, as well.

In very rare cases, IS can be treated, believe it or not, with a vitamin, B-6. In some cases the body simply doesn’t process B-6 normally and infantile spasms can result. In this case, a supplement is needed. We gave Luke his first dose of B-6 tonight. While we’re waiting on the other drug to arrive, we’ll try the vitamin and see if we notice any lessening of the spasms.

Our main objective now is to stop the spasms. It’s long (and quite complicated) to explain all that is going on in his brain during these spasms, but suffice it to say that they are very bad and need to be stopped as soon as possible. Left untreated, the spasms would cause Luke to stop developing any further than he already has, and in most case, would actually cause him to lose skills he has already mastered.

So, the treatment is to stop the spasms. If Vigabatrin doesn’t work (and half of the time, it doesn’t) than we will have to do the second option, ACTH therapy.

Prognosis: The hardest news to hear by far. Really smart doctors tend to have very little tact. That was certainly the case with our doctors today. Maybe that’s a good thing. They were straight forward with us that the long-term prognosis for Luke is very, very (insert about 10 more “very”s here) poor. Children with Infantile Spasms generally go on to have severe motor and cognitive delay. The spasms themselves will often stop by age 4, only to be replaced by another kind of seizure. These seizures are typically hard to treat as they are unresponsive to anti-seizure meds. Since seizures are so hard on the brain and can often erase whatever skills been learned, these frequent, hard to control seizures wreak havoc and simply leave very little hope of any significant development.

Prayers: I guess by now we’ve left no doubt in your mind, that short of a miracle, things are looking pretty bleak for Luke. Specifically, you can pray that the Vigabatrin works and that the spasms are stopped quickly. Pray, pray, pray for Luke’s brain. The thought that has come to us over and over since he was born was a prayer for “order to be restored” in his body. These spasms cause Luke’s brain to be extremely disorganized and the EEG shows very chaotic activity. More than ever, we need to pray for ORDER. Continue to pray for perfect development. Please ask God to bring a peace to our hearts as well, as we face all these new challenges. We’ll be traveling a lot back to Children’s Hospital, so pray for travel safety.

If we’re honest, this recent diagnosis has certainly left us with a level of hopelessness, doubt, confusion, fear, and the list goes on. You can probably imagine the kinds of thoughts that run through our mind…maybe you have the same ones. How could we pray so long and now come to this? How could you do so many miracles, God, only for this to be the result? Even though we have many questions and don’t always see God’s hand….there are certain things that we are very thankful for at this moment. We’ll end with those things:

· God miraculously opened the door in St. Louis and connected us with some of the very best pediatric neurologists in the nation. We feel they were attentive to our concerns and we’re thankful they were able to quickly discern Luke’s condition.

· Both treatments are very costly (doctors estimate up to $100,000). Just two months ago, without FDA approval for the drug Vigabatrin, insurance would have not have paid for this treatment option we have chosen. We understand they are going to be paying it in full.

· Most children who get a diagnosis of infantile spasms have already begun to lose skills they have already attained. In Luke’s case, the spasms started in September, but since time, he has learned to sit unassisted and has become stronger. He is very delayed in his development for his age, but still the doctors were very surprised that he has been making progress even after the spasms started.

We know people all over world are praying for Luke. Thank you for your prayers. We love you!

Surgery....again.

Yes, Luke is going to surgery again. You may remember, he has his feeding tube removed on August 10th. It was the easiest, quickest procedure ever! They quite literally pull it out and you're on your way!! The lady who did it said, "95% of the time, the hole closes on its own within five days and we never see you again." Luke doesn't seem to like being average. :-) So, here we are almost 4 weeks later and the hole (think earring hole, except in the belly) isn't closed yet. We know it's not closed cause we've had some pretty bad leaking this past week.

They have surgery scheduled for Tuesday, Sept. 8th. They will have to surgically stitch it closed. When I spoke to nurse over the phone (the same one who removed the feeding tube...and the same one who treated Luke in the NICU after his big intestinal surgery), she assured me Luke would be in the hospital for 2 days following the procedure even though most kids go home the same day. I asked her why he would have to stay and she said they need to observe him to make sure he is breathing on his own, etc. So, I went on to tell her that Luke just had eye surgery and did fine with the anesthesia and we were home within 2 hours. She was surprised and I think she was basing her expectation on what Luke was like in the NICU (admittedly, very unstable at times!!) I guess we'll have to wait and see, but I really think he'll handle it just fine and be home the same day. Sure am praying that way!! Wouldn't be too bad if the hole just went ahead and closed on its own. I asked her what would happen if it did and she assured me this has never happened. Basically, if it hasn't closed by now, it's not going to. Well, you know us....we're still praying it does. :) We know either way, God is in control. We appreciate every prayer you pray for us.....truly! We'll keep you posted!

Many have asked about his eyes. We're two weeks post-surgery and things seem better. Luke had his post surgery appointment 6 days ago. The doc under-corrected the left eye. He was pleased with this though because you never want to over correct. At this point, the doc sees that both optical nerves are, what he calls "pale in color". He says this is due to the brain bleed at birth. Both of Luke's pupils respond to light though, and this is a good sign that the nerves aren't too badly damaged. He also still suffers from a condition called nystagmus (jittery movement of both eyes). The eye doctor thinks this will improve in time also....and by "in time" he means years...by the time Luke is 5 yrs. old. So, we see some immediate improvements--better tracking, better eye contact, more accurate reaching for toys and faces. In other ways, we can still tell that is vision is impaired. We keep on....praying and waiting ...and praying some more!! Luke's a trooper and has the cutest little smile. He's pure joy to be around! What a blessing!

August turns out to be a big month!!

Well, somewhat to our surprise, August has turned into a pretty eventful month for our Luke.

We had been told that once Luke was eating well and not using his feeding tube for three months straight, they would consider removing it from his belly. We were getting really close to having reached that goal. Besides taking 8 oz bottles on a regular basis, Luke has also made a decent transition to solid food (although he's not a fan of peas or green beans...or anything that's not sweet. Not yet! I'm workin' on him!). So, we felt very comfortable getting the feeding tube taken out. When I called to schedule, they said we could come in the next week. Great! On Monday, Aug. 10th, Luke had his feeding tube removed!! So far things look good. The "wound" (insertion site on his belly) seems to be closing up nicely. We have to keep some heavy duty gauze on it for now and change the dressing often, but by the end of next week, things should be better. Pray that everything closes up on its own. In some cases, the hole doesn't close and they end up having to do surgery to stitch it closed. But right now it looks like Luke's is closing and healing on its own. Thank God!

In an earlier post, I mentioned a recent EEG that Luke had, showing that he is at a high risk for seizures. Truly appreciate all of your prayers in regards to this aspect of Luke's health. We still have seen no seizure activity and thank God for that! Andrew and I really felt like we needed to go and consult with the pediatric neurologist after hearing the news on the EEG results. Again, the Lord helped us. It is usually a long wait to see this doctor. When I spoke with him over the phone, he had told me that we could come in at the end of year. I called back to ask to be seen sooner and we got in last Tuesday, Aug. 11th. :) The neurologist was very thorough and took a lot of time to visit with us and explain the results and his opinions on things. I can't really say I left with a peaceful feeling in my heart though. Something about this aspect of Luke's care just doesn't sit right with me. For now, we are following this doctor's suggestions: that Luke be taken off his current med, Phenobarb, and switch to another anti-seizure med, Topamax. The plan is for him to stay on this med until July 2010, at which time he will have another EEG to determine if he is still at risk for seizures. Keep praying with us on this. We've been made aware of a couple of different resources....experts in this field of medicine. We hope to follow up with these and make the very best decisions for Luke. In the end, it could be that we are already doing what's best for him. We just think we need to do a little more research until we can rest easy, knowing he's getting the best care.

The last thing I'll mention is Luke's upcoming eye surgery. Again, another surprise!! Luke had his eye appointment on Aug. 3rd. This was a scheduled check up and a time to discuss a possible surgery date. The eye doc had told us three months ago that he would like to do surgery to correct the crossing in both of Luke's eyes.....sometime after he turned one (October most likely). Well, at this this last visit, Andrew and I decided to go ahead and request an earlier surgery. Some of the research we've done has shown that performing this surgery BEFORE the age of one can actually lend the best results. We just really had a desire to have this done as soon as possible for Luke. To our surprise, the doctor responded, "Ok, let's do it in a couple of weeks!" So, Luke goes in at 6:30 am on Aug. 21 for outpatient eye surgery. We are anxious to see the results of this surgery. At the very least, it is a cosmetic fix. At the very best, it will improve Luke's interaction with the world around him and improve his development. Crossing of the eyes can cause double vision, dizziness, headaches, loss of depth perception, confusion since each eye is sending a different picture to the brain..etc. Since Luke can't tell us what he suffers from, we can only guess that he might be experiencing some these things. We are hopeful that the surgery will correct these issues and help Luke in so many ways!! His motor development has been delayed as he is still working on holding his head up, sitting up without support, rolling, etc. He's accomplished all these tasks, but he shows a lot of weak muscle tone in his upper body, and so these tasks are difficult for him to really master. We continue to pray constantly for God to complete His perfect work!!

The boys are both such great babies and it's so exciting to watch them grow and develop. We have A LOT to be thankful for!! Will keep you posted on the outcome of Luke's eye surgery. Thanks for praying with us NEXT Friday, Aug. 21st!

On the move!

The boys are getting more and more FUN! Don't be mistaken...parenting has been fun from the beginning (minus the NICU stay). Any mother of twins can tell you though, that the first few months are just...well....WORK! There's just no way around it. Infants require a lot of attention and when there are two, it's simply double the work. I feel like we're finally getting into the season of double the FUN! :o) I recently posted a video on my Facebook page of the boys laughing at each other. It's the best sound in the world I think. More and more, they are starting to not just notice each other, but really interact. This has to be the best part of having twins. If it's true what they say, that the best gifts you can give your children are a healthy marriage between you and your spouse and a sibling, then twins have it pretty great if you ask me. A sibling right from Day 1!

Another fun moment over the weekend was watching Caleb army-crawl. Crawling is a progressive sort of skill....little by little babies sort of get better and better at it. Yesterday, I decided it was time to finally, officially mark the date (July 26th!) that Caleb started crawling. Andrew and I were getting ready for church. Normally we can leave the boys on the floor with a big pile of toys and they are pretty occupied for at least a few minutes. Yesterday morning, we did the same. I kept going back into the living room to check on the boys every minute or so. Well, in about 45 seconds flat, Caleb made it across the living room to the lovely green plant in our entry way and was about to have himself some breakfast!! Let the real fun begin!! So, now I'm off to baby-proof what I thought was already a very baby-proofed room. :) Mommy has a lot to learn!

Asking for more miracles!

I've never seen Luke have a seizure. Each time Luke had a seizure in the NICU (I'd have to look back, but I think he's had 5-10 total), I was never around for some reason. Andrew was bedside for a couple of them and by the look on his face when he walked away from the bed and toward me, it's not something you want to witness. When I think seizures, I thing shaking of the arms and legs....rolled back eyes, etc. This isn't always how it is. In Luke's case, "having a seizure" meant a stiff body, constricted airway, skin turning blue and usually 2 or 3 nurses standing by "bagging" him. (think CPR).

So......you can imagine our disappointment this week when Luke's neurologist called to tell us Monday's EEG shows that Luke is at a high risk for seizures. The news hit hard. To tell you the truth, I haven't thought much about seizures for a very long time. We have a bottle of little white pills on our kitchen counter that say on the label,"In case of seizure, crush half pill and administer to child", but I really never thought we'd use them. In that past, Luke has had a seizure when he was A) critically ill or B) in the process of getting on or off a ventilator. We haven't seen any signs of seizure activity since we've had him home. The doctors have seemed fairly confident that Luke would outgrow whatever phase this was and would go on to lead a seizure-free life. And while he's been on anti-seizure meds for months now, it's been the same dosage. This means, that as he is growing (and, thank God, he's grown A LOT!), he hasn't required any more meds. So, all of this led me to believe, that even though we give Luke anti-seizure meds in his bottle twice a day, he really doesn't need it, and come July 13th when he had his EEG, the test would show that everything was normal and we could start weaning him off these meds.

Well, that's not the case. I really don't know many other details right now, except those words the doctor said over the phone..."It's way to risky to take Luke off his meds. He is at a high risk for seizures." He continued on with some generalized statements about the pictures of Luke's brain waves on the EEG and seemed, well, not so pleased I don't think with what he saw overall. Although the doctor didn't want to see us until October, I called and requested (perhaps insisted) that we go in as soon as possible. So, we will visit the neurologist on Aug. 11th, ask all of our questions, and, hopefully, have some more answers then.

This is what I know.....I don't want Luke to have another seizure...ever. So, I'm praying that he doesn't. I'm praying for God to continue what we KNOW He has started in Luke...a COMPLETE HEALING of his brain....for perfect order to be restored...for damaged parts to be made knew and for his motor/language/intellectual development to continue without any complication. I'm praying also that, since I am his primary caregiver that I will act quickly if there ever is an emergency and that I give Luke the best care possible. Finally, I'm praying for God's peace to settle down deep....really deep in my heart. I have to be honest and say the doctor's words have sparked new fears......do I let him sleep all night without checking on him...can I leave him in the church nursery, what if I walk in the room to find him in the middle of a seizure, what if he seizes in the car, what exactly did the doctor see in the EEG, will Luke be normal, etc...... as a parent, you can imagine all of the thoughts that begin to race through my head. I serve a God of peace and I'm praying he settles all of these fears and helps us rest easy knowing He really IS IN CONTROL.

The reality is "they' (and I'm referring to the medical staff in general....everyone who is overseeing Luke's care) have told us many things that haven't been true. Don't get me wrong. I adore medical professionals in many ways. They are true heroes, saving lives everyday. It's just with Luke, "they" have a terrible record. Just listen to what "they" have said about Luke:

* On the morning of my delivery, "they" said Luke wouldn't live.

* On the afternoon before Luke was scheduled to have a shunt placed in his brain, "they" said there was no possible way for things to improve. It did improve (overnight!) and no shunt was placed.

* "They" said Luke may not have enough intestine left after surgery to be normal. Instead he grew back all of the intestine that was taken out.

* When Luke became critically ill after intestinal surgery, "they" said Luke wouldn't make it through the night.

* "They" said it would take months for Luke's digestive system to get back to normal and that he would have diaper rash for two years. He has no rash.

* "They" said Luke would most likely struggle to learn to suck and eat from a bottle and that he may go on to have oral aversions to solid food. Luke has been drinking bottles like a champ since he got home and is now eating full jars of baby food and crackers.

* "They" said Luke's right optical nerve was 60% the size of what it should be and would not grow to normal size. At last check, both eyes have normal-sized nerves.

Do I go on? There's more....but I think you get the point. I think their predictions are right..in the natural sense. But God has supernatural plans!! There is no doubt!

Will you say a prayer (or two or three!) that Luke's brain will be healed completely? Pray for seizures to never be an issue and for Luke to be able to catch up developmentally to where he should be. We need miracles...that's for sure. God can do it. We get emails and cards and phone calls often, even still, with people saying God keeps reminding them of Luke. We keep praying.....and I believe God will keep answering.

Thanks for praying!!