Busy Day

Levi slept all night last night!  He woke up once but by the time I made a bottle and came back he was asleep so I didn't bother him!  He had apples & blueberries baby food for breakfast for the first time and liked it!  I went with my daughter Miranda for her sonogram and found out that it's a boy!  We are having a grandson, how exciting!  She and her dad came over to visit with Levi and us and we spent a lovely day.  Our new OT Diane came out for the first time and Levi slept through the entire thing!  He slept all morning and woke up half an hour before our appointment so I thought that he would be bright eyed and bushy tailed for therapy.  Boy was I wrong! lol  But she was able to do range of motion with him and show us some massage techniques.  She expressed some concern that Levi's vibrating seat and the massager for his hands and arms could cause seizures.  I hadn't heard that and was concerned myself!  But I spoke with Dr. Cruschiel this afternoon and she said that vibrations would not cause seizures.  BIG relief!!  Dr. Cruschiel also raised his Topamax to 75 mg in the evening.  The seizures do seem to be less and less.  I may count tomorrow so I can have a better picture of how many he's having a day.  I hate doing that though.  Also I'm wondering what type this new seizure is.  I believe (and pray!) that it's a breakthrough focal seizure.  The focal seizures have been well under control, and we went down on keppra recently, so it makes sense.  Levi's been very happy today, and very sleepy.  I fed him early tonight because his little eyelids were so droopy, and he's been snoozing ever since. He's such a little cutie!

Letter from God

We found this letter to be very touching.  We feel much the same way about our little Levi, and I'm sure that those of you with children with special needs feel this too.  I just thought I would post it for some of you who might be interested.

Sarah Palin's letter from God

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June 13, 2011 |  5:14 am

Two items of note this morning on America's most interesting, reviled and adored politician who isn't a candidate for anything and probably won't be in 2012 --Sarah Palin.

Up first is Toby Harnden, a prolific authorand correspondent for the Daily Telegraph of London.

He's a very perceptive observer of Americans' often strange political behavior (or behaviour for his U.K. readers).

This weekend Harnden penned an astute report on the U.S. news media's reading frenzy of the nearly 300 pounds of old Palin emails, released Friday in Alaska.

The media have yet to find a smoking gun or email cursor amid some 24,000 pages yet.

The Briton writes that far from being embarrassed by any findings in the trove of her electronic missives, Palin "is likely to emerge from the scrutiny...with her reputation considerably enhanced."

His complete report is well worth a look over here.

Among some 13,000 messages was an unexpected, revealing and touching email from Palin to friends and family.

It was initially written, obviously not for publication, in April of 2008 just a few days before....

...the arrival of her fifth child, Trig, who was born with Down syndrome. In her email Palin imagines a letter from God to the family about to launch on its challenging child-rearing experience together.

Here is Palin's entire letter:

To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Friends of Trig Paxson Van Palin (or whatever you end up naming him!):

I am blessing you with this surprise baby because I only want the best for you. I've heard your prayers that this baby will be happy and healthy, and I've answered them because I only want the best for you!

I heard your heart when you hinted that another boy would fit best in the Palin family, to round it out and complete that starting five line-up.

Though another girl would be so nice, you didn't think you could ask for what you REALLY wanted, but I knew, so I gave you a boy because I only want the best for you!

Then, I put the idea in your hearts that his name should be 'Trig', because it's so fitting, with two Norse meanings: "True" and "Brave Victory". You also have a Bristol Bay relative with that name, so I knew it would be best for you!

Then, I let Trig's mom have an exceptionally comfortable pregnancy so she could enjoy every minute of it, and I even seemed to rush it along so she could wait until near the end to surprise you with the news - that way Piper wouldn't have so long to wait and count down so many days - just like Christmastime when you have to wait, impatiently, for that special day to finally open your gift? (Or the way the Palmas look forward to birthday celebrations that go on for three, four days_ you all really like cake.) I know you, I knew you'd be better off with just a short time to wait!

Then, finally, I let Trig's mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for.

At first the news seemed unreal and sad and confusing. But I gave Trig's mom and dad lots of time to think about it because they needed lots of time to understand that everything will be OK, in fact, everything will be great, because I only want the best for you!

I've given Trig's mom and dad peace and joy as they wait to meet their new son. I gave them a happy anticipation because they asked me for that.

I'll give all of you the same happy anticipation and strength to deal with Trig's challenges, but I won't impose on you... I just need to know you want to receive my offer to be with all of you and help you everyday to make Trig's life a great one.

This new person in your life can help everyone put things in perspective and bind us together and get everyone focused on what really matters.

The baby will expand your world and let you see and feel things you haven't experienced yet. He'll show you what "true, brave victory" really means as those who love him will think less about self and focus less on what the world tells you is "normal" or "perfect°.

You will grow and be blessed with greater understanding that will he born along with Trig.Trig will be his dad's little buddy and he'll wear Carhartts while he learns to tinker in the garage. He'll love to be read to, he'll want to play goalie, and he'll steal his mom's heart just like Track, Bristol, Willow and Piper did.

And Trig will be the cuddly, innocent, mischievous, dependent little brother that his siblings have been waiting for_in fact Trig will - in some diagnostic ways - always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.

Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except he has one extra chromosome. Doctors call it "Down's Syndrome", and Downs kids have challenges, but can bring you much delight and more love than you can ever imagine! Just wait and see, let me prove this, because I only want the best for you!

Some of the rest of the world may not want him, but take comfort in that because the world will not compete for him. Take care of him and he will always be yours!

Trig's mom and dad don't want people to focus on the baby's extra chromosome. They're human, so they haven't known how to explain this to people who are so caring and are interested in this new little Alaskan. Sarah and Todd want people to share in the joy of this gift I'm giving to the Palin family, and the greater Alaska family.

Many people won't understand_ and I understand that. Some will think Trig should not be allowed to be born because they fear a Downs child won't be considered "perfect" in your world. (But tell me, what do you earthlings consider "perfect" or even "normal" anyway? Have you peeked down any grocery store isle, or school hallway, or into your office lunchroom lately? Or considered the odd celebrities you celebrate as "perfect" on t.v.? Have you noticed I make 'em all shapes and sizes? Believe me, there is no "perfect"!)

Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this.

I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: "My ways are not your ways, my thoughts are not your thoughts- for as the heavens are higher than the earth, my ways are higher than yours!"

I wrote that all down for you in the Good Book! Look it up! You claim that you believe me - now it's time to live out that belief!

Please look to me as this new challenge and chapter of life unfolds in front of you. I promise to equip you. I won't give you anything you can't handle. I am answering your prayers. Trig can't wait to meet you. I'm giving you ONLY THE BEST!

Love,
Trig's Creator, Your Heavenly Father

Great Party!

Levi's party was a raging success!  We had a steady flow of people right up until the very end!  It was wonderful to visit with our family and friends, and to meet new people who have been praying for our little Levi.  He had such a great time, being held by everyone all day long.  By the time we got home we was so exhausted!  He slept all night and Patrick had to wake him up to feed  him before church!  Today we went to church and out to lunch with my dad for Father's Day, and again he was so good!  I think he likes getting out of the house.  I know I do!  Thanks to everyone for your prayers and support!

Finally Party Time!

I am so excited to see everyone tomorrow and celebrate Levi's healing!  All the preparations are made, the food is bought, and all that's left for me to do is sit here and count the hours until tomorrow. lol  I feel like a child on Christmas Eve.  When I think back to our days in the PICU at Cardinal Glennon it's hard to believe that this chubby little munchkin was the 5 pound peanut hooked up to a tree of 14 different medicine pumps, on a breathing tube, in a drug induced coma.  How sweet it is to be here in this moment!  He's napping right now, and will wake up soon to gobble down some formula and cereal.  Which makes me think about when he didn't know how to eat on his own and we had to teach him.  What a success that was!  Just makes me realize that there will come a time in the future when I look back on everything we are trying to teach him now (to hold his head up, to use his hands and arms, to see) and reminisce about how successful THIS was.  We are so blessed and thankful that God has brought us to this point, and know that the path He is leading us on for the future will be even sweeter.  God bless all of you!

EEG Results

When we did the EEG last week, I knew that the clusters of eye movement/arms lifted up were seizures, but also had some concerns about other movement Levi was experiencing.  The EEG showed that those other movements are not seizures, so that is very good news!  The clusters are Infantile Spasm seizures, which we had already known.  We had done some research on this type of seizure, and some of the information we read was very scary.  I spoke to the neurologist about what I had read, and thank God, she was able to put my mind at ease.  She said that although these are dangerous seizures in that they can cause brain damage, and can be difficult to bring under control, the biggest risk would come into play on down the line if they are not controlled.  That is the reason they use such aggressive treatments in the beginning.  So we have gone up again on the Topamax, to 60mg in the morning and 60mg in the evening.  We have plenty more room to increase if needed, but they want him to be on the least amount of medicine as possible, which is why we are increasing at a slow rate.  The seizures have not stopped, but we do notice a decrease.  Hopefully soon they will stop altogether! This is yet another praise report that I attribute to fasting and prayer.  Since we began the fast 16 days ago all we have had is good news!  Praise God!

Prayers for Baby Caitlyn

The following is copied from my friend's facebook wall.  Please join us in praying for this little baby girl.  I know some of what her parents are going through and am asking for prayers for Caitlyn as well!  Thanks so much!

A little about Caitlyn's family.

Caitlyn was born on May 25th at 8:06 am weighing in at 6 lbs 13 oz 19 inches long. She is the daughter of Nathan Bishop who is from Greenfeild and Amy Bishop from Jerseyville. She has an older brother, Matthew. She's being as strong as she can be!! They just want Caitlyn to be healthy and be able to bring her home. So im creating this event to give our uncommon friends a chance to help! Shes need...s all the prayers she can get! So lets all say a special prayer for baby Caitlyn and her family!! And please feel free to take this event and share it with all of our uncommon friends!!

Caitlyns story:

When baby Caitlyn was born she had a severe infection that wiped out her entire "system" they think they have that infection treated and now they are repairing the damage it did to her body. She has a problem with her heart called PDA. Which is basically the two valves that are open in the womb that would normally close a week after birth. It is very common in preemie babies to have to have this surgery to help them close however, she was not a preemie and this is the first time Children's hospital has seen a full term baby have this problem where one of the valves hasn't closed yet. She will have to have the surgery asap but she has to be stable for that to happen so they currently have her in a medically induced coma to let her body rest while the meds try to fix everything. She also has what is called a surfactant defiency (sp?) The lube that your lungs produce is called surfactant and it helps the lungs open back up. Caitlyn isn't producing any of that. She had pulmonary hypertension and swelling in her brain. So she has several things that are wrong but right now the heart operation is the most important to fix. I will try and keep the wall to the event updated the best i can when new info on baby Caitlyn is avalible. THANK YOU EVERYONE!! Now go...pray your hearts out!!

Change in Hours for Levi's Party

We have decided to have the party from 11-4 instead of 6:00.  I think that would just be too long for the little guy to handle.  I hope this doesn't cause any inconvenience!  Looking forward to seeing a lot of people there.  Can't wait to meet you!

Eye Appointment and Cast Checkup

Yesterday we went to the long awaited appointment with the eye doctor.  It was pretty much what we expected.  The good news is that his eyes are formed correctly and there is nothing wrong with the eye itself.  However, due to the brain damage his brain is not comprehending what his eyes are seeing, or something like that.  I understand what it means but am having a difficult time putting it into words.  The diagnosis is cortical visual impairment, alternating exotropia, and legal blindness.  The brain is still developing and will continue to develop through at least 2 years of age, so it is possible that he will overcome this and he will gain full vision.  We feel as though we have seen improvement in the last week or so, so we are encouraged by this news.

The spica cast was checked today and looks very good.  We will be scheduling surgery to replace this cast with a short cast (one that goes to the knees on both legs) for next week or the following week.  I was surprised they think he still has room in there, but they are the experts.  I'm glad he will be able to keep this cast until originally planned.  We are almost four weeks into the twelve weeks of cast and surprisingly it's gone by fairly fast!

Still waiting on the results of the EEG.  Levi was having so many seizures Sunday I was worried, but last night and today they seem few and far between, thank God!  He does have some muscle pain now that he is on the lowest dose of Baclofen, but it's semi-manageable with Tylenol and Motrin.  I had to hold him all night last night, but at least he was able to sleep in my arms.  We will be glad to get completely off Baclofen and see if that is the cause of the new seizures!

Yesterday we filmed a video testimony for church of all the Lord has done for us in these first six months of Levi's life.  It's important to let others know that God still works miracles and, even when we can't feel Him, He is with us!  After the video airs at church we will either post it or the link for it on here.  For anyone interested in our church, you can check it out at www.enjoychurch.tv It's practical teaching with a humorous twist.  We love it!

That's all I have for now.  Don't forget Levi's Celebration Party on June 18.  We hope to see lots of people there and want to meet those of you who have been praying with us and/or following Levi's story.  For info, check out the post from last week.

Nice Weekend

Levi has had a nice weekend.  Saturday he stayed with Dad while I went yard saling with Aunt Misty and found some adorable stuff for him (sandals!) and that afternoon we went to Riverbend for Lisa's 18th birthday party.  Happy birthday Lisa!!!  He did wonderfully at the party and loved being cuddled by family.  We were concerned that he would be in a lot of pain this weekend since we decreased Baclofen, the med that controls the tightness in his muscles, but it has been manageable.  A few doses of Tylenol or Ibuprofen have made him more comfortable.  This morning we went to church and he was terrific all through service.  He has spent the remainder of the day napping and looking at the toys on his play gym.

Tomorrow we have our long awaited opthamology appointment.  We do feel like he has been seeing more clearly in the last week and are encouraged by that.  I'm excited to see what the doctor says.

He has been making progress too!  The past couple days he has been eating better and has taken his bottle with little to no chin supoort!  He's also been doing more with his hands and his arms, stretching and moving around.  We've been working with him in therapy to bring his hands to center and feel his own hands, and last night he was sleeping with his hands overlapping on his chest!  I feel like we are seeing many positive improvements in a short amount of time.  Once he starts learning I think he will grow by leaps and bounds!

Less than a week to Levi's party, we are looking forward to it!

Well we are still waiting for the results of the EEG test done last week.  It seems to be taking longer than expected, and I'm just praying that it shows that he is not having Infantile Spasm seizures and it's something different and way less concerning!  Patrick has been researching online and found that the medication that eases the tightness in his muscles may cause seizures.  So we looked back at hard dates and found that these new seizures began within a few days after we started the medication.  We spoke with the doctor and she has decreased the medication until Monday but has not yet prescribed a new med.  She said if the seizures decrease by Monday we will take him off Baclofen, but if not we will keep him on it.  Patrick and I discussed it and agree that we want him all the way off  Baclofen before we decide if it is what caused the seizures or not.  When we began that med he was at a much smaller dose than he is now, and so we feel that just decreasing it will not give us an accurate picture.  I thank God for these doctors, though, and the fact that they listen to us and respect what we have to say.  In fact, many of you may remember the doctor that I ranted about when Levi was in the PICU.  Turns out he knew what he was talking about.  I really didn't care for his attitude in the beginning, but we have grown to respect his opinion and feel that he is much kinder than we originally believed.

I've been looking back over some of our recent posts, and it brings to mind what Pastor Daren is always teaching, that when you are expecting a miracle you should look back at all the miracles God has done for you in the past.  I'm believing that these Infantile Spasm seizures will go away very soon!  Looking back, I see that He has not only cured Levi of meningitis, but there were things like the PICC line.  I hated that thing!  But we walked it out and got past it and now I rarely think about those days.  At the time they seemed neverending, but that's been several months ago now.  We have gone through extreme screaming fits and projectile vomiting which turned out to be acid reflux and is now well under control.  It's only recently that Levi has begun to sleep well at night.  All these issues seemed to be insurmountable at the time but once taken care of are rarely thought of anymore.  I know that this will be the case with the Infantile Spasm seizures!  It's something we must walk out that will pass with time and I believe Levi will be none the worse for it.  God is working His plan through us, and although I have no idea where He is going with it, He knows, and that will just have to be good enough for me.  I trust Him.

Please continue praying for our little Levi, and know that we are praying blessings on all of you!  Don't forget about the party on June 18th!