Saturday, March 14, 2009

Good Day


Evan had a good day yesterday. We got to hold him a lot, maybe too much. He was overstimulated last night. He won't open his eyes, they are still pretty swollen, so it is hard to tell if he is awake. Sean was teaching him how to play video games to prepare him for Garrett and Grace coming to visit today and we also put some clothes on him. He did not like getting dressed, but he looked so cute afterwards. The docs have given us some more information about Trisomy 13. The test results we received was a rapid test and we are still waiting for a more indepth results. He can be full Trisomy 13 which means every cell in his body has an extra 13th chromosome, partial trisomy 13 means every cell in his body has a partial 3rd 13th chromosome, or mosaic which means random cells in his body has an extra 13th chromosome. The results of that test will determine how he does so please continue to pray for these test results. Right now we are trying to wean him off the vent. It has been at its lowest setting since yesterday morning. He had a good day, the vent will only take over if he holds his breath or is not breathing enough breaths per minute. He did it all on his own yesterday. Last night after we left he had to be sedated and he relied on the vent a few times. That was probably because of the overstimulation yesterday. He was pretty agitated before we left and he was having to be suctioned quite a bit and he really hates that. The goal right now is to get him off the vent and the lines out of his belly button so he can start eating. Thank you for the prayers, calls and emails. This has all been so overwhelming and the messages have really helped keep us going.

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11 comments:

Lexie said...

so mosiac would be the best option there, right? Great to hear he's doing well with the vent and hopefully all those wires and tubes will be a distant memory soon. Lots of thoughts and prayers still for all of you.

StephF said...

Glad he's doing well! He's so stinking cute!!! Lots of prayers and love coming your way!

Michelle said...

I'm so glad that you're having good days! I love the pics of Sean teaching him how to play video games! Too funny! I think I forgot to mention that I love the name you picked for him. You all are still in my prayers.

Barbara Williams said...

Monica & Sean,
I am so glad I found you guys on Facebook. We have been praying for Evan for at least a month and will continue. I have emailed word of your blog site to everyone in our family so they can keep informed. Evan looks precious and he is a Bumgarner so he is a fighter! Take care and God Bless, Aunt Barbie

Julie said...

I'm still praying and I'm praising God that he had a wonderful day yesterday! :)

The Shaw's said...

Praise the LORD! He looks so adorable in his outfit!!! I will be praying for the upcoming test results to be of good report. Thank you for keeping us posted during this difficult time. It's great to hear and see what God is doing. I will also be praying for him to be weaned from the vent and start eating! Love you guys. Please call us if you need anything. We are happy to drive!

Stephanie said...

I just wanted to let you know that I am praying for you. I know how your heart aches as my son Levi was also diagnosed with Full Trisomy 13. God is BIG. Enjoy every minute with him, and know I am praying for a miracle!

fortsmithmomma said...

Monica-
It's Catherine Frederick. We are all praying for you and I will be asking all of my moms to do the same. As I am sure you know, Evan is in the best of care. Know that we are all praying for Evan and for God to give your family patience and strength. I am also praying for God to be with the doctors and nurses caring for Evan and guide their minds and hands. If you need anything at all- just call or email.
Catherine
catherine@fortsmithmoms.com

kerry said...

Hey guys... we were so glad to see the pictures today and so glad that you had a good day yesterday. I hope that today went as well.
He's been on my mind constantly and I've been praying for him and for you guys constantly. I can't imagine how overwhelmed you must feel right now... little Evan has two amazing parents. We'll keep praying - The Wards

JannaScraps said...

Monica- I didn't even know you were expecting-- I saw something on FB and found you guys! What a precious gift from God...he's beautiful! I'm so happy for you but know that you all are needing some prayers and reassurance from the Lord. Count me in for the prayers. So happy I found you. Kiss that sweet baby for me. xoxo jw

Brian said...

Glad to see he is having a good day....Hopefully you'll hear more good news soon! We're praying for you....