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Saturday, May 18, 2013

Thoughts when you can not sleep!

I can't believe I am 27 weeks already! Time sure is flying. I'm glad though. Being pregnant is not something I enjoy at all. Being so short, I am just not comfortable. I was thinking a lot though and it's keeping me from sleeping tonight so of course I need to type it all down!!

This baby is going to be like traveling a new path. From the looks of it, he is completely healthy. No health issues that came up during my pregnancy with Kadyn. This baby will be born and able to come home with us. It's going to be so different. Kadyn spent maybe an hour with me in the hospital before he was rushed off to another hospital 15 minutes away for emergency surgery. This baby won't need that. He will stay with me during our stay in the hospital. I will be able to hold him right away, bond and snuggle. He won't spend a week away from me while I recover in one hospital and him in another.  He won't be going to the NICU and spending 3 weeks, coming home for a week then going back for 3 months. He won't need brain surgery, he won't need a ton of testing to make sure nothing else is wrong, he won't need medications after medications. I'm more scared of giving birth to a healthy baby than I would be giving birth to another baby with medical issues. Why? I traveled down that path and continue on traveling down it. It's what I know, it is all I know. Hydrocephalus, Shunt, brain surgeries, epilepsy, heart murmurs, kidney issues, lung issues, wheel chairs, braces, hospital stays, constant ER, special diet, heart break, tears, worries, and the unknown.

Journeys not travels are quite scary. Knowing that this little precious baby growing inside me will be joining us shortly is scary. Being able to bring this precious gift into the world to be Kadyn's little brother, Kadyn's best friend and little helper is going to be amazing. Knowing that this baby won't grow up to be judgmental over the handicapped like some people is a breath of fresh air.

Kadyn is such a precious gift and he continues to amaze us everyday. With all he has been through the past 5 years, it's so amazing how he has turned out. He is so full of happiness, love and personality. Anyone who meets him just falls right in love with him. He just has this way of capturing your heart and keeping it. His smile, his laugh, his voice, his personality, everything about him is just so special. He has fought his whole life to live and none of his conditions are stopping him. Kadyn has proven everyone wrong! He has been to hell and back and still came out strong as ever. I am so thankful that even though I had Kadyn at such a young age, I fought for him, knowing he would have Hydrocephalus, I fought for his life. His daddy and I fought. We continue to fight for him. I am thankful I am more knowledgeable now, so I can make all the right decisions for Kadyn. Like our choice to not medicate, and not get a feeding tube, and not do anymore genetic testing.

We refuse to give Kadyn seizure medications because on his diet he is considered well controlled. With his brain damage and anomalies it is to be expected that he will have seizures. Medication made his seizures worse, he had no control what so ever. Now he may have a break through unrelated to illness or fever once every 3-6 months.

No feeding tube. Yes Kadyn did have struggles with keeping hydrated last summer, but it was also 90-100 degree's everyday, which is not normal for Michigan, but Kadyn eats GREAT and is gaining weight and not losing. Yes he still drinks from a bottle. Who cares! He should be on a sippy cup? Well he should also be walking, talking, potty trained, and in a booster seat but he is not, so who cares that he is still on a bottle. I stand by No feeding tube unless Kadyn starts losing weight. He actually just gained 4lbs since his last surgery.

No more genetic testing. Would it be nice to know if there is one underlying condition causing his other conditions. Yes, but not at the price of blood test after blood test after blood test. With the odds of them finding on condition or syndrome linking everything together being about a slim to none chance it really is not worth it. Not knowing didn't stop us from expanding our family and it won't stop us. Genetic testing won't cure any of Kadyn's conditions and it won't take them away, so why put him through so much unnecessary blood draws, testing, appointments if in the end it changes nothing. It will be just another label added on to his chart. His chart is thick enough.





 August we begin another journey. Being parents of 2. We are both excited. Juggling a newborn and juggling Kadyn's needs are going to be difficult in the beginning. I will need to adjust to less sleep than I already get, but it will be well worth it!


1 comments:

sara said...

My fave pics so far ever!!!!