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.


PRAISES:
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!

PRAYER REQUESTS:
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'S PROMISES:
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.

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.