Wednesday, January 14, 2009

Big News!!!!!!!!! Mayo Clinic here we come!!

As so many of you know we have been praying for a long time that we would be able to take Connor out to the Mayo Clinic in Minnesota to see if they could help him. Well, as of Friday at 9am I received the phone call from Mayo that Connor was accepted as a patient and they want us out there for his first appt. on the 19th at 9am. WOW.............So here we go, off to Minnesota on Sunday and then anywhere from 5 to 10 days at the clinic. They've told us to be prepared for 5 days in the clinic with a possibility for more, but there's no way to tell that until they evaluate him on the 19th. Yet another grand adventure for Little Bug.

Connor turned 3 years old on Sunday the 11th. I can't believe our baby is 3 years old already. The timing of this trip just couldn't be more appropriate. The best gift we could ever give Connor would be a life of good health and happiness. We feel that this is our time to get to the bottom of things that have been a mystery for Connor for so long. Please join with us in prayer that he would be a great little traveler on Sunday and that the week would be helpful and miraculous. We've seen God do an awful lot of things for Connor and we trust that this endeavor will be no different. As you pray, would you ask that God would give clarity to the doctors that will see Connor. The first doctor that we will see is Dr. Jeanie Tung. She will do all of the initial evaluation and decide upon the treatment plan. We are trusting that she has understanding, compassion and unconventional wisdom that it will take to get Connor moving in the right direction. As you will remember from the very beginning with Connor he has had unexplained bouts of pain and agitation with all things regarding the GI tract. He has been a mystery to every doctor that has seen him and although they verify that there is a problem, they cannot identify what that problem is. We are desperate for Connor at this point. It is getting worse and he has got to find some relief so he can get on with his little life and be free of pain in his body.

The plan is in motion for the trip, but it isn't without hiccups along the way. Randy is gone in LA on reserve for AA until Saturday night, then he flys home for us to leave Sunday morning. I got struck with some kind of physical illness yesterday that left me flat out. I'm trying to ween the baby for now until we get back, get things set up for travel, lodging and transportation while in Minnesota and determine the best comfort for traveling on a plane with Connor. This is a HUGE endeavor for us. My mom will be staying with the two little ones until we return home.

There is so much more to report at this time but the details will have to remain sketchy at best. Connor will be starting preschool when we return from Minnesota. He was supposed to start this past Monday but we decided to preserve Connor's health before taking him on an airplane and spending our time in Minnesota. We are excited about his class and his teacher and all the people that will be working with him. He will get to work with a Physical Therapist, Speech Therapist and Occupational Therapist. He will also continue with swimming therapy which has been a great asset to him in strength building. He will be in school for 2 1/2 hours Monday - Thursday.

Tuesday of this week we had a great appt. with a child neurologist that was able to give us some vital and informative information regarding Connor. We've been waiting for this appt. for over a year so it had been much anticipated on our part. He was able to assure us that no brain damage occurred during Connor's first year of life in the hospital. This has been of significant concern to us because of all of the drugs and narcotics that were administered to Connor over those dreadful days in the ICU. The significant delays that we experience with Connor are most likely the culprit of Connor's level of daily pain and the amount of time and effort he puts into not only managing pain, but anticipating it. The doctor was hopeful that when we get his GI issues figured out, treated and under control, we will see a whole new little boy emerge with new skills, greater understanding and greater cognitive development. This was all good news to us.

Mackenzie and Alex are so enjoyable and growing like weeds. Mackenzie is nearing 2 years old in April and she truly is little miss independent. She has a mind of her own and spirit just like her mama!!! Alex is 4 months old now and doing quite well...not sleeping through the night yet, but hopefully that will emerge soon.

Randy and I are truckin' right along with the busyness of family life and the transition of his schedule with AA. He is gone about 23 days a month with his flying schedule which leaves us "winging it" quite a bit!!! Thank the Lord that his grace is sufficient for us and for our needs. I would really love to go on and on about things that are happening at the current time, but my moments are limited to get things done before leaving for Minnesota. Please pray...pray...pray...and ask everyone you know to pray for Connor during this time of exploration into his physical illnesses. We are trusting for great things for Connor and incredible insights from this trip. We will have a computer with us in Minnesota so we will update the blog frequently with progress and prayer requests. Please keep checking back. We will also be able to receive emails so we would love to hear from you with your thoughts, comments and encouragement.

Lovebug Hugs,
Lori

4 comments:

Heather Bennett said...

PRAYING PRAYING PRAYING!!!
You go gettum!!!
Lord, may this be a time of answers and healing for Connor. May this be a time of renewal and strength for his parents. Father lift them all in your arms and grant them favor with every step they take!

Love you!
Auntie Heather #2

hjoy said...

Keeping youguys in our prayers. Hope the trip to the Mayo clinic is a huge success

Sky said...

Happy Late Birthday Connor, I bet your getting to be a Big Bug!!! I remember you guys talking about the Mayo Clinic way back when Connor was still in the hospital, Im so glad you all get to go, we will say a prayer that all goes well and that they can offer some light, direction and help with Connor... Lots of Love Sheila and Skylar

Anonymous said...

YEAH!!!!! We will be keeping you all in our prayers. I think Mayo will be our next step too. We have so far frustrated docs in two different states, and 4 cities! LOL!

I also wanted to forward you some information on another medical group that we found that may be helpful to you as well. They are based in Utah, but have offices all over the country that they fly to.

Let us know when you get back and I can forward the info to you. It would be too much to go through right now with everything else. Good luck and God Bless!!!

Steph in IL