Friday, July 21, 2006

Sweet Pictures, Disturbing News



I wanted to share some sweet photos... Braden started tracking objects, so we immediately went out to buy a little activity gym to stimulate his interests, and it seems he prefers it more for napping - isn't that just the way it goes? Braden loves napping with Mommy & Daddy in the rare occasions we get to snooze with him - this one is sweet, Brad actually fell asleep with his feet on the bassinet with his legs off the bed, hanging with Baby B in the bed before putting him in the bassinet.

This week brings disturbing news, Braden started having seizures. At first we weren't sure, so we started recording them on video, and all his doctors confirmed that they are indeed infantile spasms or seizures. They sent us to get another EEG, and it confirmed that he is having seizure episodes during sleep and awake. These are generalized seizures, the kind that can cause further brain damage. Our nuerologist decided it would be best for us to take a very aggressive approach to attempt to stop the seizures. Today mommy & daddy will be trained to give Braden daily injections in his leg. He will be getting a steriod they call ACTH. He will be gaining a lot of weight while on the steroid, could become irritable (again), could get a rash or acne, could get bronzing of the skin, and we have to monitor his blood pressure, temperature, and glucose levels. They tell us this approach should stop the seizures within about 7 days, in a normal scenario, but will stay on the steroid one month from his last episode. Then for six months after the injections are done, he will be able to resume immunizations. Because the steroids will break down his immune system, he will have to be cared for at home, and not a daycare.

After 2 1/2 weeks of training the lady who was supposed to take him, the day before I returned to work, she decided she just was not comfortable taking care of him. Luckily, my friend Susanna offered to take him until the end of August, and after 3 feedings she was off to the races. She has been such a blessing, as she was with me the day we were going from doctor to doctor trying to figure out what was going on with Braden. I truly have leaned on her, and she was there to cry with me when the doctors gave us a prognosis. So, what does this mean for us now?

The doc says Braden will probably eventually develop another kind of seizure once these have subsided, so we are looking at a lifetime of medication to keep them under control. She also said that possible (not probable) outcomes down the road are a Cerebral Palsy diagnosis, mental retardation, and he may never learn to walk. Obviously we are devestated, but trying to keep things in perspective... we will still be praying for a miracle, and counting our blessings that this situation does not usually have a fatal outcome.

Please continue to keep us in your prayers during this difficult time, as we will try our best to remain positive and keep on the side of hope. Thanks to everyone who continues to keep us lifted in prayer, we could not make it through all this without you.

Kodi, Brad, & Baby B

7 comments:

Aunt Jeannie said...

Baby Braden,

Feel the love and prayers that are sent to you every day. You continue to be in our thoughts and we will keep praying for a turn around in your diagnosis.

No matter what the outcome is Braden, just know that you have a lot of people that love you and cherish you for being who you are. A wonderful little angel!

Brad and Kodi, this is a trying time for you as parents and as a couple. God will not give you more than you can handle. Just take one day at a time and trust that all will work out. We love you all dearly.

Much love, hugs, prayers and cuddles,

Aunt Jeannie, Uncle Dave and the kids

Susanna and Greg said...

WE LOVE YOU THREE. I have loved keeping Braden this week. He is such a sweet baby and is so easy to love. We have been praying for all three of you and we know that GOD will get you through all of these difficult times. And like I have told you a billion times, we are only a phone call away, just call and we will come running.

Love YOU,
Susanna, Greg and Lil B

Ashley and Brady said...

Kodi, Brad, and Braden

Brady and I are praying for the three of you each and everyday. We love you and know that God's hand will watch over and protect you. You are constantly in our prayers.

Love,
Ashley and Brady

Tanya and Mike Bird said...

Hi Kodi,

Just wanted to let you know that Mike and I are keeping posted through your blog, and please know that we are praying for you and Brad, and especially baby Braden!

It's good to hear that you are remaining positive. That attitude will benefit you as well as your sweet baby. I truly admire your strength and tenacity during such a difficult time. We are praying that you receive good news very soon!

If you need anything at all, please do not hesitate to call on us.

Mike & Tanya Bird
673-3464

Victoria said...

Kodi, Brad, and Braden,

You are all in my thoughts and prayers daily. Every time I catch up on your news and updates I realize what an amazingly loving and strong family you are. Braden couldn't have been born into a more supportive or caring home.

While I may be miles away, I am still just on the other end of the phone if either of you need a shoulder, ear, or hand.

I can't wait until I can meet your amazing little man and see you all again.

I love you guys,
Victoria

B said...

We're keeping you guys in our prayers! I know this is a trying time for you. You are blessed with a wonderful little boy and I know God will keep you all in his hands!
Brandy,Jeff, and the Girls

shalamarie said...

I am so very proud of you and Brad. Braden has the best parents in the world. God gave us this little man for a reason and he is being received with open arms regardless of the outcome. We all love him and I belive that is clear based on the blogs posted here. I know that there are so very many people praying for you guys. Add me and Paxton to that list. I love you all and will see you very soon!