Wednesday, March 12, 2014

Noah update

It's been 7 months since Noah has been off of his ketogenic diet. I ran across a recipe I use to use for him the other day and felt overwhelmed and sick to my stomach just looking at it.  A lot like child birth, you forget the pain and anguish of it all pretty quick and enjoy the blessings afterward. Unlike child birth I wouldn't want to bounce back and do it all again. ;)
Noah had a routine EEG on Monday to see how he is doing and once again it was free of seizures. He has now been seizure free for 30 months! It has been so long but in some ways it feels like just yesterday we were in an ambulance rushing to the hospital. As each month passes by I feel more and more peace that epilepsy is a thing of the past. Praising God!
Now for the present. Noah is doing great at school. He loves learning and reads as much as he can. When I look over his math I find myself speeding as fast as I can through it not wanting him to know he is about to be quicker than me at his problem solving. I'm slightly competitive and definitely not ready for my 2nd grader to pass me by ;)
Noah turned 8 years old on March 4th. We are having a Seahawks party this weekend for him. He loved watching the Seahawks this year and bragging to daddy that his team won and the 49rs didn't. He may take after his mama a tad bit when it comes to competing.
Diabetes continues to be a huge part of our daily lives and most nights takes priority of Jon's and my sleep. Noah remains strong through it all but understandably has melt downs about once a week. He received a pump just before Christmas that has made it so he doesn't have to use needles for his insulin. It has been a huge blessing! It has taken awhile to figure out the right adjustments through out the day but overall has been great. We are praying that our insurance will cover a Continual Glucose Monitor. This will be a monitor Noah would wear and it would alarm if he was going low. It would allow Jon and I to get some much needed rest at night as well.
Thanks again for prayers for our family and especially Noah. We are all looking forward to summer and having some much needed fun as a family.

Monday, September 23, 2013

Finished a Crazy Journey and Began Another

It's been awhile since we last updated this blog and a lot has happened. A lot of good amazing things and quite a bit of hard difficult things. Let's start with the good. On August 9th Noah completely got off of his diet. It was an amazing day! He wanted to have pizza and ice cream sundaes and that's exactly what he had. He enjoyed them so much and kept saying "mmmmmm this is soo good!". Noah had a blast every day choosing his food, not having to lick his plate clean, having snacks whenever he felt hungry, eating whatever his brothers had and feeling completely free. We had so much fun this summer and probably ate out too often since it was easy and we didn't have to plan out Noah's food. My favorite part was going camping and not preparing food for the whole week before. Life felt so carefree this summer even with a newborn. The best part of all is that Noah continues to be seizure free. PRAISE GOD!

Now for the hard difficult stuff. On September 5 I took Noah to the doctor because he had been drinking crazy amounts of water, peeing all the time, he had lost 6 lbs in 2 weeks, and was back in ketosis. I first called his neurologist and dietician and they said he needed to eat healthier and more calories. My mommy instinct said there is something more so I had him checked out. The nurse took a urine sample and I could tell by the look on her face that something was really wrong. The doctor came in and said Noah's blood sugar was 700 and it looks like he has type 1 diabetes. She went on to say we need to immediately go to the hospital and be put in the PICU. I knew his symptoms matched diabetes but I never dreamed that's what it would be. It made sense to me that it was just problems from getting off the diet. Never did I imagine he would have another huge health problem. I immediately broke down while Noah stayed strong and was thinking about what he should pack for the hospital. So we went home grabbed some clothes and Jon left with Noah to yet another hospital stay. Noah was admitted to the PICU because his levels were so high and his brain could swell as they slowly lower his levels which could cause seizures (never mind the fact that he already is at risk of seizures). After Noah got a room Judah and I came. I sat there asking, praying, and pleading that this was temporary and that it was only caused by the diet. During our stay we saw 3 different doctors who researched and talked to Noah's dietician and neurologist and all said it has nothing to do with the ketogenic diet and Noah just has another health issue. Through all of this Noah was a champ although he had to get 2 IV's and poke after poke. Noah's sugar came down and thankfully he didn't have any seizures and remained his chipper self. All the nurses thought he was so cute and we're amazed at how well he looked through the whole process. Most kids are super sick at that high of a level. Noah was able to get out of PICU at that point and to the main floor. The rest of the week we juggled kids between Nana, grandma, and Momo as we learned what type 1 diabetes was, how to control blood sugar levels, and how to give insulin.  We came home after we were overloaded with information, new meds and lots and lots of new Legos.

It's so hard to explain to your 7 year old son that he has yet another very difficult health problem and once again we have to be careful with what you eat and not only that but we have to poke your finger and give you multiple shots every day. Unlike the diet, this is something you will have for the rest of your life. Noah has done amazing although I don't think he gets it's for life. Whenever he or the other boys ask about how long this will last I say he will always need medicine but I pray that doctors will find another way for him to take it. That seems to satisfy them for now.

We have all been having good days and bad days. Days where we almost forget that he has diabetes and days where we want to scream and cry and ask WHY? Please pray for all of us but especially for Noah that he can live happily and be able to be a carefree 7 year old boy who wants run, play, and build Legos all day long.

Noah would never be able to be on the ketogenic diet if he had been a diabetic earlier. If that would have happened he would still be having seizures. Praise God for his timing.
Noah's health even with such high blood sugar.
No seizures!

Noah's blood sugar levels to stay at a healthy level.
Noah's anxiety over pokes and shots.
The rest of the families anxieties and fears.
No seizures! Jon's and my greatest fear is that Noah's seizures will come back and we won't be able to use the diet to stop them.

God is who He says He is.
God can do what he says He can do.

And because Noah is a follower of Christ
God's Word is alive and active in Noah.
Noah can do all things through Christ.

We know God works out all things for good but sometimes we ask why, why to a little boy, why to a little boy who has already gone through so much? My prayer for Noah is that He will see God's plan on this side of eternity and be able to worship Him in all of His greatness.

Tuesday, April 2, 2013

Its That Time!

Noah is doing amazing and because he is doing so well his nutritionist has decided that we can start weaning off of his diet. We are sooo excited! We just took a step down in his diet and although it doesn't make a huge difference in his food it does make room for a little extra fruit or some mini m&ms. Noah is loving that!  He will be at this ratio for one month and then have an EEG to see if he continues to be seizure free. If he is still doing well than a month after the EEG we will go down in his fat ratio again. Slowly, slowly we will continue this until about August when he will be completely weaned off and eating normal food again.

I can't believe we have made it two years on this crazy diet. Please pray that Noah will continue to be seizure free and for the rest of the family to trust in God during this time and not to be anxious.

Friday, November 2, 2012

Quick Update

A couple weeks ago Noah had a routine EEG and it came back completely clear of seizures. Yay! He is doing great and because he is doing so well we are able to go up in calories and down in his ratio. We started at a 4:1 ratio (4 parts fat to 1 part carb + protein) and we are now down to a 3:1. This isn't a huge change in his food but it does open it up for a few new recipes. One recipe is a cutout cookie and the other a carrot cake recipe. Both are great for the holidays.

We pray continually for Noah and that the diet will continue to work. I specifically am praying that as we slowly (very very slowly) go down in his ratio and creep closer to the 2 year mark, which is June, we can wean him off of the diet. I am trying not to have too high of hopes but it is a real possibility.

Thanks again for your love and prayers!

Monday, August 20, 2012

Bye Bye Medication

Our little epilepsy warrior has been fighting for over one year now on this crazy, yet amazing, diet. Now, 1,700 meals and 850 snacks later he is completely medication free! God has worked an incredible miracle in Noah's life and has given him his spark in life back. I have lost count how many medications Noah has been on and tried and only one of those worked for one kind of seizure. Never did I dream a year ago that he would be seizure free as well as medication free. We continue to praise God daily and pray that this is the end to Noah's epilepsy.
Noah will continue on his diet for another 1-2 years (praying that we can wean him off next summer) if all continues to go well. Although he still struggles with his diet he is being so strong and brave! Noah is learning some amazing self-control at a very early age. He will be one amazing, disciplined man someday. I am so excited to watch him grow and see how God uses this time in his life to mature him and grow him closer to God.
Noah is going to Crosspoint School for 1st grade this year and he is super excited. It will be hard to have him gone for so long each day but I am very excited to see him grow, learn, and meet new friends. He is our little sponge and wants to learn everything he can, especially if it happens to be about dinosaurs.

Family photo at camp. Motocross is one of the boys' favorite things to do at camp.

Our little fish.

The boys were ringbearers for a close friends wedding.

Digging for dinosaur bones.

We eat in the dining hall every day at camp and each meal the boys dress up in a new costume. They were FBI agents here.

Silly reading time with brothers.

One of Noah's lego creations. A viking ship.

Getting ready to run a mud run for World Concern.

Not too muddy. He seems to find a way to stay clean.

Sunday, June 17, 2012

"Greatest Success Story"

A lot has happened since our last blog and I think the best way of sharing is by pictures. So here they are:

On March 31st we held a 5k walk to raise money for epilepsy. We raised $1600! Thank you to all of our friends and family who came out and supported Noah and many other people who suffer from epilepsy. It was really wet but we all had a good time.

The walk was getting a little long and wet for the kids.

Momo with almost all of his grand children on Easter.

Noah's kindergarten graduation. A year ago he was having so many severe seizures we didn't think he would  be able to go to kindergarten.

So precious!

Noah is doing amazing! He turned 6 years old in March, has graduated kindergarten, and yesterday we celebrated his 1 year mark of his diet. It has been a long year but so good! In 2 months he will be off of all medications. His doctors say that he is their "greatest success story". Thank You Jesus!

Tuesday, December 20, 2011

Christmas Came Early

Besides the amazing birth of our Savior Jesus Christ we have received the best Christmas present ever. As of Friday, Noah's EEG was completely clear of seizures. Praise God!!! Noah's nuerologist came into his room with a large smile on her face telling us the great news. She is completely amazed that the diet has brought him from such a truly low spot, where we weren't sure what his prognosis would be, to a complete healing. All we have to say is, OUR GOD REIGNS!!

It has been almost two years since we discovered Noah's epilepsy. Last Christmas Noah began a rapid decline. We struggled for 6 months with grand mal seizures and up to 400 absent seizures a day. My eyes swell with tears remembering him suffer through the day to day of being in and out of hospitals, struggling to finish sentences, and frustrated because he didn't know why he was feeling so "different" all the time. At the same time I am in true amazement that he could continue pressing on through it all.

We are so excited Noah is home with us this Christmas and not in the hospital. Noah is looking forward to going to the hospital to deliver gifts for the children that have to be there over Christmas. His love is really starting to grow for others since he can relate.

We are so grateful to God for giving us our crazy, fun-loving, lego addicted boy back. Yes, we still struggle daily with the diet but it is worth every tear (mine and his), every candy-cane we have to miss out on, and every battle of the wills.

We love you Noah Boah!!! You have no idea how much you mean to us.