A Day of Fasting

Thanks to everyone (and there were many!) who joined us in fasting for Levi today!  First thing this morning we had a HUGE breakthrough on something we have been waiting a couple months for!  It's amazing how God works!  Levi is doing really well!  The neurosurgeon came back into the room and said she thought his shunt needed to be set to a different level. It's really neat how it's done, she just placed a magnetic dial over the shunt and turned it.  Just took a minute!  I admit I was a bit nervous about it, but the fluid around his shunt is mostly gone, and he's been so much more alert today!  He's taken right to his bottle with really no chin support, his appetite has been better, and at one point today he was holding his head up.  All great things, exactly what we want to see!  This afternoon we went shopping and to dinner with Miranda and had a great time!  Tonight he had his first tub bath in six weeks!  I wanted his legs to soak so his muscles would be soothed, and he doesn't sit up well enough to be put in the sink, so I put his tub in the big bathtub.  As soon as I put him in the water he relaxed.  I let him soak for about fifteen minutes then lathered his hair really well.  (I was ecstatic to get in such a good hair washing, but he was less than thrilled!).  We cuddled after his bath and it was so nice to hold him in a normal position and be able to rub his little back.  But he had to go back into his Rhino brace and then on to bed, or should I say, beanbag. lol  All in all it was a wonderful day, and we are looking forward to an excellent holiday weekend.  Hope everyone has a lovely weekend!

Miranda and Levi

  Levi's first bath in six weeks

It's all gooood............

We have gotten all good news today. I have to admit, we are not used to getting all good news, but I could get used to it very quickly!!! We started out coming in early for a CT scan. After we were done, we went on up to the outpatient surgery room. We had to wait for over two hours (we were a bit early), but finally they wheeled him away. After a short wait, the surgeon came out and told us that he did not see any reason to recast Levi. The surgeon stated that a brace could do what the cast was doing, that it wasn't necessary to totally immobilize his hip. This was an answered prayer. The surgeon stated that his hip has really healed up nicely during the six weeks he was in the Spica cast. We are now in the post surgery room waiting on discharge papers. Hopefully we will be out of here within a couple hours. As we were waiting around, our neurosurgeon came in to discuss our worries about Levi's shut (the reason we came in early for the CT scan). She said everything looks good and that the fluid we felt around his shunt was "normal" for his situation. WOW.....more good news :) We are so glad we did our fast earlier this month. Ever since we fasted, we have had all good news with our lovely son! For those who want to join us, we are finishing out this month with a one day fast tomorrow. I know a few from our small church group are joining us, and the type of fast is totally up to you. It could be a full fast, or just give up something like coffee for the day. Please pray for his seizures to STOP! I know that if we all come together and pray/fast for his seizures to end, that God will answer us! He has already healed Levi in so many ways!

Last Day of Long Spica Cast!

Well today is the last day that we will ever see this long spica cast, tomorrow we can say So Long and Good Riddance!  Unfortunately we are still projected to have 6 more weeks with a Spica Cast that goes to his knees on both legs, but I'm praying that his hip heals quicker than expected.  I can't believe it's been six weeks already.  When it was first put on 12 weeks seemed like forever.  Thank God it's gone by fast!

I called the neurosurgeon about the fluid that has been collecting around Levi's shunt, and we are going in early before the surgery tomorrow to have a CT scan.  Hopefully everything is fine!  She said it could mean a few different things and not necessarily bad, so that's encouraging.  Please pray that the shunt is functioning well and the fluid is a minor issue!

Somehow I missed the call from the neurologist.  I don't think my phone even rang, and by the time I got her message the office was closed for the day.  A little disappointing, because I wanted to talk to her about going up to 6 pills in the morning and 6 pills in the evening of Topamax, instead of leaving it at 5 in the morning.  My hope is that taking a jump like that will knock these seizures away!  I just don't know if that's a safe dose or not.

He's been really great today.  We had lunch with our friends Barb, Larry, and Amy today, and Levi was super good!  He's been so calm and cuddly.  Mom is snuggling with him right now :)  I'll post tomorrow after the surgery and will hopefully have answers to my many questions by then.  Here are a few pics of Levi's last day of the long spica cast lol

Levi's First Fireworks

We had a lot of fun last night at the fireworks.  Levi was very good, he seemed to watch the first few and then lost interest.  The noise didn't bother him at all, which surprised us.  Today has been a decent day.  I gave him half a clonazepam last night but he still had seizures this morning.  He is still having quite a few when he wakes up, but doesn't seem to have many, if any at all, while falling asleep now.  That's an improvement!  He had PT and OT today, and he's been so very tired.  He slept or cried all the way through PT, and was slightly more awake/cooperative half an hour later for OT.  He was able to be stretched and massaged, though, so at least something was accomplished.  We have been working on getting him to bring his hands to center since our very first PT appointment, and in the middle of the night last night I checked on him, and both his hands were at midline, one on top of the other!  This is wonderful!  He's gained a lot more range with his arms lately!  This afternoon he was tuckered out and took a LONG nap, then had dinner/meds, and dozed off and on.  Maybe he will be more alert tomorrow.  Here are a few pics of him last night:

Prayers Needed for Caitlyn!

Please pray for little Caitlyn Bishop!  This little girl is fighting hard and needs a miracle!  Let's all do our part to move that mountain!  The day our church came together in prayer for Levi marked the turning point in his healing.  Let's do that for little Caitlyn!  In Matthew 18:20, Jesus says "For where two or three have gathered together in My name, I am there in their midst."  Here is the latest update from my friend's facebook page:


Update on my friend's baby, Caitlyn Bishop. Her lungs are still not working properly. She is still on the echmo machine, which is breathing for her while her lungs heal and get stronger but that doesn't seem to be happening. They are going to recheck her on Wed. Pray for better news. She is still fighting. Thanks to all who have been praying. Caitilyn is almost 5 weeks old

Seizures

Yesterday morning was so glorious with no seizures, but today and last night he had seizures like normal.  Probably not as many as normal, but he still had quite a few.  I didn't give him any Clonazipam last night (a seizure medication that was prescribed as needed to help him sleep), but I did the night before, and Patrick wondered if it was the Clonazipam that stopped the seizures so well yesterday, so we gave him a half tablet before we went to church.  This of course made him sleep quite a bit, and he doesn't have seizures while he's sleeping, but during the hour he was awake the numbers were down significantly!  I'm looking forward to seeing how this afternoon goes.  I'll give him a pill tonight before bed and monitor how he does in the morning as well.  Tonight is also exciting because it's Levi's first fireworks!  One of the churches in the area puts on a wonderful fireworks show, and we are excited to attend!  I'm hoping he will be able to see them and will enjoy it!  Happy Sunday to all of you!

Great Morning!

Levi woke up and had breakfast at 8:30 this morning.  Usually we see a few seizures while we are trying to feed him, but today, there were none!  Then we went yardsaling and out to lunch.  I remember the days we dreaded taking him anywhere because we didn't know if he would be screaming, but thank the Lord, those days are over!  He slept through lunch and, in fact, only had 1 cluster of 3 spasms the entire morning!  He had a few this afternoon but they were mild, and only 1 ticking seizure the entire day, which was very light, I wouldn't have noticed it if I hadn't been holding him, and I think it was triggered from choking on his bottle.  So today has been VERY good for him seizure-wise, and he's been calm and happy, other than some teething pain first thing this morning.  Please pray that the Baclofen was what was causing the seizures and, now that he's off of it, they will GO AWAY for good!  I'm so thankful for how far he's come!  Thank you all for your prayers, and please know that we are praying for you, too!

Levi snoozing in his bean bag chair

 Levi and Dad chilling after lunch :)

Hooray! Seizures are Steadily Declining!

Well I was only going to count the seizures that one day, but I was so encouraged I decided to keep track every day since. So Tuesday he had 40 spasms and 15 ticks, and he had the last dose of Baclofen at 6pm.  Wednesday he had 37 spasms and 15 ticks, Thursday he had 24 spasms and 8 ticks, and so far today (it's 3pm) he's had 15 spasms and 6 ticks!  The great majority of his spasms do not cluster. That is wonderful news!  Patrick really believes that the Baclofen is what's causing the infantile spasms.  I have to agree.  And I think the ticks are breakthrough focal seizures.  I spoke with the neurologist today and she increased his Topamax to 75mg in the morning (he was getting 60) and 75mg in the evening (he's been on that for a few days now), and increased Keppra from 1.5ml twice a day to 1.7ml twice a day.  I'm confident that this will get rid of these pesky seizures!  I'm ready to start seeing improvements! 

Levi had PT today and was awake but cranky for the first 1/2 to 3/4 and slept the rest of the time.  Boy does Miss Shawnery know how to put him to sleep. lol  I love it, cuz he's usually out for a while and I can get some chores done, or just have some relaxation time!  All in all he did pretty well.  On his tummy he not only lifted his head, but held it steady in one place for quite a while!  Last night he slept all night in his beanbag and only got up once for a diaper change.  I didn't have to hold him at all!  On the down side, while I was making him a bottle I thought I felt a spider on my foot and jumped back and pulled a muscle in my leg (it's been hurting for a while already). Of course, there was no spider, so imagine how ridiculous I felt after most of the pain subsided.  I never was able to go back to sleep.  Go figure, Levi sleeps great and I don't. hahahahaha  Anyway, thanks so much for all your prayers and please pray that these seizures STOP!

Pics

Levi is so funny, he is definitely "one with the sun" just like Moga!  Every time he goes into the sun he lifts his face up to it and enjoys it!  He's been fussy this morning so Tommy and I took him outside and sat in the sun and, sure enough, he fell off into a comfy sleep.  We got some cute pics of that, and I'm including other pics I've been meaning to put on here.

Levi, Tommy and me outside today

 Levi in lambie

 My dad, Aunt Mishy, Levi, Lisa, Moga, and Billy at lunch on Father's Day

Seizure Counting

Even though I was really dreading it, I felt the need to count Levi's seizures yesterday so I can give the doctor a good idea of what's going on.  It's somewhat draining to watch so closely and keep a good count of seizures, and I decided to pay close attention from 8-8.  When he had the video eeg he had a little over a hundred seizures.  I knew they were much reduced, but really had no idea of a number.  What I found was surprising and very encouraging!  From 8 to 8 he had 40 spasm seizures, only about 5 of which clustered, and the highest cluster was only 5!  And he had 15 of the new ticking seizures, which I think are breakthrough focal.  I gave him the last dose of Baclofen at 6, and just after 8 he started having a lot of seizures!  I didn't add these in my count, and really wonder if it was caused by the Baclofen.  It will be interesting to see what happens now that he is completely off that med.  On the down side, he cried off and on for 4 hours last night!  His muscles hurt, he is teething, he has less room in the spica cast.  The poor kid!  Tylenol and Motrin work for the most part, but for some reason he hurts more in the evening.  I'm praying that these seizures stop completely now that we are off Baclofen and they can prescribe him another cp med that will take his pain away.  Until we know what's going on with the seizures we don't want to start him on anything else. 

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!