Friday, November 27, 2009

I'm thankful for...

This year Thanksgiving meant a little more. I am thankful for my sweet precious little girl, Addison who has blessed the socks off of our family. Pray for her as we go for more blood work on Monday. All her test results came back and she has elevated pyruvate, lactate and some fatty acids are also elevated. The pyruvate and lactate are being repeated and a second test is being run to tell us more about the fatty acids. It could all be due to diarrhea, but they have to rule out any other issues.

Kate is thankful for...
For having a trip

I'm so thankful for Kate and her spunkiness, Chris and his devotion to our family and my family for their support during these hard times - THANKS!

Wednesday, November 18, 2009

Forever changed...

November 13th marked the one month anniversary of Addison's first episode. Over the past month life has completely changed and I have been forever changed. I have not been checking email, blogging, even communicating with the world except for a few close friends. I needed time to digest all of what went on and needed time to sort things out. I have been at my parents house for two weeks on Thursday - wow, long time away from home. Chris has been working 15 hour days and has had four 30+ hour shifts since I have been away. I cannot say thank you enough to those of you who have continued to lift our family up in prayer - we still need it!

Addison is doing well and will celebrate 5 months on the 22nd of November - time truly does fly. Her almost two week stay in the hospital did us in on sleeping and eating, but I figure eventually things will work back out. She is having more labs done on the 23rd to re-check her lactate and pyruvate levels and I received a call today saying they are adding one more panel of tests - not sure what, the doctor is supposed to call and explain. Addison has become a very happy and playful baby, has two bottom teeth and LOVES her mommy!

Kate has started asking more questions recently about Addison's episodes. Just tonight she was talking to me about trying to help me be patient on the way to the hospital. She is slowly working through things as best as a two year old can. She is so excited about moving into our new rent HOUSE the first weekend in December. It will be nice to finally have a place with a yard to play in.

For me, the biggest issue I face is trust. Some people take Addison's diagnosis of FPIES seriously while others seem to think of it as any other allergy. Both are equally bad and life-threatening, it is just that FPIES is so rare most doctors do not even know what they are dealing with. Addison's allergy doctor told me I would probably always know more than a doctor seeing Addison in an emergency room- scary! Addison has to have IV fluids and must be closely monitored if she ingests anything with soy, milk, or rice - rarest thing ever. Her body goes into "shock". - low blood pressure, etc.

Chris is working hard and needs prayer. I know God has a plan and purpose for our family even in the midst of hardship. Never before has life seemed so scary, unsure and INSANE - but God is bringing us through!

God Knew...
Chris cancelled his rotation to ACH three times during his fourth year of medical school, to end up rotating in September of last year and loving it

In the hush hush process of ranking, Chris ranked OU OKC ahead of ACH (to be closer to family) and right before he submitted he just looked at me and said it's not right - I assured Chris we would be ok and to follow God's direction - there are no accidents!

Addison was born at just the right time. I was able to have excellent care from my doctor (placenta acreta with both babies) but all of her health care has been in Arkansas with the most amazing pediatrician.

After Addison's second episode we were almost dismissed and I was actually told by an attending to quit entertaining the thought of it being an allergy - how dare her! That was the only thing out of the ordinary on both days that Addison had an episode. To make a long story short, a new doctor saw Addison the day we were to be dismissed without a diagnosis and she immediately knew what it was - her friends child (who is also a resident at ACH) has FPIES as well - now you cannot tell me that is a coincidence!

There are so many ways that God has shown Himself to us during this time. He chose to allow Addison to continue to bring happiness to us on this earth. I cannot say I know what it feels like to lose a child, but I can say I know what it feels like to think you lost a child. I have never pleaded with God about anything like I did on the way to the hospital on October 13th - the words, Jesus don't take my baby poured from my mouth and please God protect her. I'm sure Kate thought I was crazy but I didn't know what else to do - the worse feeling I have ever felt.

I am returning home in a few days and I know life is going to be complicated with residency and establishing a "new" normal, but I feel like I'm ready for the challenge again after visiting with friends from Tulsa and getting time to take care of myself with the help of family. Thanks to all of you who held us close. Word traveled fast and I know the prayers from even strangers were heard by God - Thank you!

Forever Changed...