Sunday, November 29, 2009

Thankfulness, cont'd

M- MIRACLES! Yes, they still happen. every. single. day.

N- NAP time. J My boys take two LONG naps everyday. It’s wonderful.

O- Let me think…..The Ozarks…. The Office….sure, those will work.

P- Our PARENTS. So thankful for parents who have always loved us, supported us and showed us with their lives how to trust God and serve Him faithfully. We are who we are because of them and I am so thankful Luke and Caleb have such a Godly heritage.

Q- This is getting hard….. ? I dunno. Quiet nights. Can that count for Q? Both of our babies sleep through the night (most of the time). I remember when they didn’t. I have my sanity back. J And I know it’s not always a guarantee…babies that will sleep through the night. So, I’m really thankful ours do.

R- Republic Elementary II—my former place of employment. This one group of people has shown more compassion and generosity towards me and my family than you can ever imagine. I love you all, I MISS you and I could never thank you enough for all you’ve been to me.

S- Smiles—You parents know what I mean when I say…there’s NOTHING like opening the bedroom door in the morning, peeking around the corner and seeing your child grinning from ear to ear. I am thankful that despite some long, exhausting days , my two sweet boys can both smile and giggle and make me pause in wide-eyed amazement.

T- 242—our Sunday school class. This amazing group of people has meant so much to us over the last 5 years. They know what it means to “bear one another’s burdens”. So thankful to have these people to share the journey with!

U- U2 concert!!!! I surprised Andrew for his 30th birthday this year and we headed to Oklahoma for a concert he’s been dying to experience! It was worth the money and driving through the night. J

V- Our VAN!! So loading two infants in and out of a vehicle turns out to be a very difficult task. Really thankful we found a great deal on a great van this year.

W- The WORD….as in Scripture. So thankful for God speaking to us and revealing Himself to us through the Bible. Thankful to have it my language and the freedom to read it whenever I want.

X- Sheesh…was this alphabet thing my idea? I’m moving on…

Y- YOU

Z- I’m gonna have to get creative here. Zero: The number of times God has left my side. This is what I know for sure today…..He is ALWAYS with me.

P.S. As I’m typing this, Luke is laying the floor babbling. “Ba ba ba ba ba…da da da”. Luke started babbling a few months back and then kind of just….stopped. Maybe in response to these stupid seizures…who knows. But anyways, he’s been squealing and smiling and all that, but the babbling of syllables was gone for a while. And today, it’s back. He just seems more “present” the last couple of days. In the words of Sara Groves, “It’s the everyday miracles that keep my hope alive….” Thank you, God. Thank you for being with Luke. Thank you for every struggle and every challenge that teaches us how to truly live……how to recognize the miraculous in our every day life. Thank you for the struggles that allow us to see just how big you really are and for allowing us to know our weakness so, in turn we can know your strength.

Monday, November 23, 2009

Ketogenic Diet

After a ton of research, lots of prayer, discussion, silence, more reading, more prayer......and then finally just a mommy's "gut" instinct, we've decided to put Luke on the Ketogenic diet in an effort to control his infantile spasms.
Our other option at this point was to try to something called ACTH therapy, steroid injections given twice a day. This method is known to be very effective, but somehow I couldn't get a peace about it. Technically, it waits ....there on the back burner, ready to be used, but I truly pray Luke never needs it.
The plan now is to wean Luke off of one of his anti-seizure meds (Topamax) over the next two weeks. We will then take him to St. Louis Children's (not sure on a date...somewhere around the 7th of December) and he will admitted for about a week to start the diet. The diet change at this stage is thankfully just a change in formula. Luke does eat some table food, but he hasn't really taken to it much. So, it shouldn't be a huge change for him to just drink a different kind of formula for a while.
Your unending support, ceaseless prayers, words of encouragement...it is all so very much appreciated!! God is with us!

Friday, November 20, 2009

Decisions, decisions

We just talked to our docs in St. Louis this evening. They have scheduled Luke to be admitted to St. Louis Children's on Wednesday, Nov. 25th. Luke started a new med, Vigabatrin, about three weeks ago to control his infantile spasms. The seizures haven't stopped even though we have increased the dosage (in fact on most days, the seizures are worse than before), so it's time to look at a different option.
As we've stated in other posts, Luke's prognosis is very, very poor at this time. The prognosis can be "better" with QUICK and COMPLETE control of the seizures (that is 100% seizure free, not just a reduction in seizures). So, that is the goal right now.....getting the seizures stopped...and getting them stopped as soon as possible.

Luke's doctors are recommending that Luke be admitted on Wednesday and begin ACTH therapy.....an aggressive steroid treatment used to treat infantile spasms. The treatment will require a 3-4 day hospital stay. Afterwards, Luke would return home and we would be giving him steroid shots at home for another 4-6 weeks. Luke will have a suppressed immune system and will have to stay at home for the course of the treatment. He will be closely monitored by a home health nurse as the steroids can cause high blood pressure and other serious medical problems.

Over the past couple of weeks, Andrew and I have become increasingly interested in something called the ketogenic diet. It is a high fat diet sometimes effective in treating infantile spasms and other forms of epilepsy. The diet can be quite difficult to follow and hard to implement in toddlers/small children. But, because Luke is still mostly on formula, he would be able to switch to ketogenic baby formula and remain on this diet for a couple of months to see if it helps at all. Luke would be admitted for one week to begin the diet and achieve "ketosis" and then sent home with the formula. We can't start this diet until he is weaned off of one of his meds, Topamax. It will take two weeks to wean him off of this med.

Our doctors have been REALLY great. It's wonderful to hear them say over the phone, "We've met Luke twice. You're his parents, so we trust you completely. We want this to be a team approach". We really feel we will get their support either way. If left up to them, they would do the steroids first and then if that doesn't work, try the ketogenic diet. Their reasoning for this is simply that the steroids will work faster and since we're trying to preserve his brain, we want to get him seizure free as soon as possible. The steroids are just very intense and we (well I say "we"...mostly it's just me.. Kristi) are very scared of this treatment. Personally, I'm just not sure it's the answer for Luke. If the steroids do work, they'll work by Christmas, whereas the diet can take 2-5 months to work.

Of course, most of all, we want what is best for Luke. All we're looking at are stats....and the medical community's best guess of what will work. Every child is different, and so it's hard to know what to do next. Thank you for your constant prayers. We have a such a huge support system...it's amazing!! Please pray God will give us wisdom. We asked the doctors to give us until Monday and then we would call with our decision....




Tuesday, November 17, 2009

An ever present help in time of need!!

Really trusting this promise tonight. As you know Luke's docs in St. Louis started him on a new med about two and a half weeks ago now. In addition to the new med, they increased his Topamax dosage quite a bit too.
For the last.....4, maybe 5 days, it's been very evident that Luke is having more seizures and not less. Could it really be, I keep asking myself. Am I just imagining this? Could the medicine that's supposed to be helping him actually be making him worse?
Couldn't get this thought out of my mind this evening as I've watched little Luke seize so much the last few days. Put a call in to St. Louis about 10 minutes ago. Thankful that Luke's doctor was actually the doctor on call tonight. Calmly I said, "Am I just crazy or could this medicine be doing the exact opposite of what we need it to do?" "Mmhhh." She says. "Never heard of that".
The paperwork that came with the Topamax says, "Contact your doctor immediately if your seizures get worse". So, I'm thinking it's happened at least once before for them to put the warning on there.
Her answer was "I'll look into it."
Our docs are GREAT. They truly are. They are just so finite in their wisdom. And, unfortunately the only answer right now is.... try this drug and if it doesn't work, wean off of it and try another drug and if that doesn't work, try another...and on and on the vicious cycle goes. The next one we try will be drug #4, and well....we're just not getting anywhere.

I hesitate to type out the same two words, PLEASE PRAY!!! I know you're praying your hearts out. But...please pray!

I hung up the phone, grabbed my mom's hand and put my other hand on Luke and asked God again for the impossible. Trusting tonight that my God will be just that...An EVER PRESENT help in times of trouble. And feeling really grateful that His answer is never, "mmmh...I'll have to look into that."

Will keep you posted. Thank you for praying.


Friday, November 13, 2009

Whew...it's been a long day. Thankful for a safe trip to St. Louis and back.
Luke had the EEG first. He does so great...it must be old hat for him now. They attach 25 different wires to his head and secure them with some very STINKY glue. It's yucky. But anyway, he fell right to sleep, which was great because they always need some portion of the study to be while he's sleeping. So, the EEG showed no changes. :( I'm not surprised...he seizes everyday, so I didn't really expect his brain to look any better today. Still, it's hard to actually have them say that to you. The plan now is to increase the med and see if that helps at all. We return to St. Louis on Nov. 25th. If nothing has changed by then, they'll discontinue this med and do the steroid therapy. Sigh. I get a knot in my stomach every time I think about it. I just really don't think Luke would handle steroid therapy very well. It's suppresses the immune system (they told us we'd be home bound again for 3-6 months since it's flu season), can cause dangerously high blood pressure and has several other adverse side effects that I think would be really hard on Luke. So, the truth is, I'm pretty scared. We have 12 days for something big to happen. Nothing's impossible, I know.

Luke also had a spinal tab this afternoon. He did well for that also. Had to be put all the way under, but he handled the anesthesia ok. Thank God. This was done to check chemical levels in the brain (specifically neuro transmitters from what I understand). They are still trying to figure out exactly WHY he is having the spasms, so that's why they did the spinal tap. The results of that won't come back for several weeks.

If you're reading this and praying, thank you. The longer we travel this road with Luke, the more we come to understand we are truly FEARFULLY AND WONDERFULLY made. It's just unbelievable how every intricate detail has to come together just right in order for things to work like they should. It's comforting to know we are asking Luke's CREATOR to take care of him. We have some great docs, but it seems now, more than ever, we need a miracle.


Thursday, November 12, 2009

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 3rd 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 26th, 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.

Tuesday, November 10, 2009

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.

Monday, November 2, 2009

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.