Off to St. Louis

We're hittin' the road bright and early tomorrow morning. Plan to leave by 6 am....which means we'll leave at about 6:30 :-))

We'll be at Children's Hospital all day. Luke has a few procedures to get done. When you're out of town, they cram all the appointments into one day! So, he has an EEG in the morning, then some lab work and then a spinal tap in the afternoon. That's what is PLANNED. More than likely, they'll end up adding something else to the schedule, but that's all we know about for now.

Today is Day 13 on the new med and we see no changes. He's still having a lot of startle seizures throughout the day. I even thought to myself today, "Is he having more, instead of less?!!" But then I realized maybe I'm just more aware of them now....now that we're watching his every move, hoping and praying this will be the day that we don't see them anymore. So, we'll see what they say tomorrow. I think the plan is to leave him on this med for at least a month to see if it'll end up working. Anyway, we will keep updates posted.

Thankful Thursday

For the five years that I taught 3^rd Grade, I had a practice in my classroom that every Thursday was “Thankful Thursday”. We took time during our busy morning routine to stop and go around the room and let everyone tell about what they were thankful for. Every year was the same. The first couple of weeks of school, most of the kids would shrug and say, “I dunno”. I would eagerly urge, ‘’Come on. You can think of something…..just one thing….that you’re thankful for.” By the time May rolled around, I had kids bouncing in on Monday morning declaring, “Mrs. Lundgren…I already know what I’m gonna be thankful for on Thursday!” My heart was happy!! Being a stay at home mom this past year, I’ve missed those times with my students…times of learning about gratitude and what really matters in life. This year for Thanksgiving I heard of the idea of thinking of one thing you are thankful for, starting with the letter A. By November 26^th, you will have completed the alphabet and come up with 26 things for which you are thankful.

Here’s my list so far:

A- A--I’m so grateful for Andrew, my husband. I don’t even have to tell you how stressful the last 14 months have been for us. And while everyday hasn’t been easy, Andrew has been an incredibly supportive husband, a relentless fighter and advocate for Luke, a loving and VERY involved daddy, a hard worker and provider for our family, a prayer warrior …..the list goes on. I love this man!!!

B- B-- Blogs. I have learned so much by reading other people’s blogs. Other twin mommies have coached me through their blog entries. I have learned a MULTITUDE of things by reading blogs of other families who have children with special needs.

C- C--Caleb. What an adorable little guy. He fills our house with so much joy!! He makes us laugh everyday and definitely keeps us our toes as he explores EVERY corner of this house!

D- D--Doctors~ If you know our journey, you know we’ve have some good ones and some not-so-good ones. And the Great Physician has sure shown Himself to be the VERY best caregiver without a doubt. But, overall, I’ve been very impressed with the incredible knowledge and compassion we have found in our doctors this year. I am thankful for people who dedicate their lives to medicine.

E- E--Espresso!! Being a mommy of twin boys is down right HARD WORK! I am thankful for coffee that gets me going in the morning.

F- F--Financial provision. We took a huge step of faith when I quit my job to stay home with our boys. Never have regretted it once (especially with all that has gone on with Luke). Except for one month or maybe two, the budget NEVER works out on paper…and yet, every bill gets paid…every need is met.

G- G--Generosity- Along those lines…..Andrew and I have never been so humbled by the generosity of other people. I could write 20 pages just about this. This year we have been given clothes, toys, food, gas cards, had our mortgage paid more than once, free babysitting…not to mention the incredible gift of time that so many of our friends have given us through long conversations, phone calls, and prayers. It’s one thing when you’re family helps you,…it’s another when your own peers are sacrificially giving to you (and you know their budgets don’t work out on paper either!!).

H- H--Hope. We’ve learned a lot about hope this year. Our hope is in God, our Creator, Savior and the Giver of all good things! I love that no matter how difficult the circumstance or how bleak things may seem, we serve a God who inspires hope…..”Now faith is being sure of what we hope for and certain of what we do not see” Hebrews 11:1 I’m also thankful for HEALTH. Even though Luke has his struggles, the four of us have remained healthy this year. I can’t even remember the last time I had a cold.

I- I--The Internet. In all seriousness, I don’t know what I would have done without Google. When I was pregnant I was able to learn about twin-to-twin syndrome and use that information to ask the right questions. When our doctors here dismissed Luke’s startles as “non seizure” activity, it was on-line information that helped us know to look for more answers. Information is a very good thing!

J- J--Jehoavah-Rapha – I have experienced God in many different ways this year. I am thankful to know Him as Jehovah Rapha-The God who heals!!! Cannot thank Him enough for the many, many ways He has healed both Caleb and Luke this year.

K- K--Well, all that comes to mind are names…..Kari, Karlene, Katie, Kathryn, Kimberly, Nurse Kathy, Kristin…..the list could go on. Each of these people has been such an important part of this past year. …each in their own way. If any of you are reading this….I’m thankful for you!!! Kari, for your constant intercession and for being a great big sister, Karlene for UNENDING support and love, Katie for being brave enough to come hang out with a new mommy of twins everyday for 3 months, Kathryn, for fighting the battle with me, Kimberly, for your sweet friendship and understanding like no on else can what it’s really like to have two babies, Kathy, for being an amazing nurse and caring for Luke like he was your own, Kristin, for the many boxes of boy clothes and all of the other ways you’re been so generous. On that note, I’m thankful for ALL of my friends!!

L- L--Of course…Luke! Our little fighter man has taught us so much. We’ve learned to appreciate every single day, celebrate the small stuff, expect big things from God, keep on going even when you’re afraid, never give up…..and many, many other things.

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!