In the midst of alarms ringing, doctor's prodings, nurses poking, tests being taken and confusion all around us, Connor found his hands!!!! What an absolutely cute thing to experience. We thought that maybe he had found them yesterday, but today it is certain!!! He just looks at them as though they had sparkling rainbows all over them. His little eyes light up and he coos in the sweetest tones I have ever heard. The way his bed is situated here in his room he can have a cord across the top to hang brightly colored objects on so he can see. Appropriately so, I found many little bug things to hang so he could bat his little hands at. He is doing marvelously well with this exercise in dexterity. He even got a new bug mobile put up today.
This mornings Upper GI test went well. So well in fact, that it leaves the docs even more baffled and befudled at what is going on with Connor. So far today, he has only had 2 episodes (which is better than he has been doing) and the rest of the time he has been a great baby!!! He cuddled with Auntie Maureen this afternoon, cuddled with mama most of the day and even cuddled with Grandma M. tonight!!! WOW, there's alot of cuddling going on here on the 4th floor!!!
This weekend the docs really do not have any other plan than keeping Connor comfortable and helping him with pain management. Once Monday comes, I hope to be able to meet with the heart surgeons and get going on the plan for our little bug.
We sincerely hope that all of you reading our blog would know the great depths of hope we feel this Easter weekend. We not only have hope that God is working on Connor's behalf, we have the hope of the one and only, Risen Lord and Savior on our side. He is helping us fight this battle and HE WILL BE VICTORIOUS!!!!!! Praise the Lord for this Good Friday. This day in history is the day that our Lord was crucified and placed in the tomb. His sacrifice, meant our salvation. His pain, meant our healing. His death, meant our life!!! We are forever grateful to be part of the family of God and part of a great extended family of believers!!!! What would we do without all of your prayers? Thank you for being Christ's hands and feet extended to us in our time of need.
Lovebug Hugs,
Lori
7 comments:
Lori,
Praise God for the Blessings you have received today by experiencing one of Connor's "firsts!" God knows just what you need in the middle of all the craziness. This craziness too shall pass and we will continue to pray for a speedy recovery. I am also praying for continual strenght and rest for YOU!
Love
Tammy
Dear Randy, Lori, and Connor -
This is just a note of encouragement from a couple of "kindred souls" who happen to be spending a little time here at Children's with you.
Our son Brendon has Down Syndrome, too, and also enjoyed a "birthday" recently (he turned 9 months old on the 8th). The three of us arrived here Wednesday morning (4/12) for GI surgery that included a Nisson (sp?) procedure and placement of a G-tube port. (Feel free to read a little something about Brendon at his own fledgling blogspot -- inspired, we might add, by the one you created for Connor --and located at the following link: http://our-boy-b.blogspot.com.)
If we say nothing else, we want to say thank you for the example of your deep and abiding faith in God. It has been a great encouragement to us and a much-appreciated reminder of just how faithful God is in all things.
When we learned in March of last year that our little guy had Down Syndrome, we were devastated. Add to that the inescapable medical complications that seem to accompany this diagnosis, and we were feeling pretty discouraged following a series of stays here shortly after Brendon was born. (It is nothing compared with what the three of you have been through, but at least we can relate to some of it. And we know from recent personal experience what a incredible blessing it can be to connect with someone...anyone...who has been in our shoes and lived to laugh about it.)
Having said all of that, we want you to know that we would not change a thing about this experience. Brendon is the most fascinating, engaging, and lovable little guy we could have ever hoped for. He is, to share a phrase we coined back during the pregnancy, "the only boy we always ever wanted."
We can tell by your blogs and pictures that you feel the same about Connor. May God bless you richly in this incredible (and sometimes humbling) journey and fill you with strength, joy, and wonderment as you discover what a precious little guy the Lord has placed in your care.
With our prayers,
Keith & Tracy Fowler
Dear Lori,
How very precious is God's love for you in the fact that you were present to witness one of Connor's firsts in his life. I can remember back to those days when my children too discovered the new and wonderful things that seemed to capture their attention. It made me so grateful that they were able to see and enjoy everything new in their little worlds. Keep on keeping on in the faith, hope and trust that you have so deeply engrained within your soul Lori. Our Father in heaven kinows all of our needs before we even ask. We love all of you and we continually hold you up in prayer on a daily basis. Happy and a very blessed Easter to you and yours.
In the never-ending Love of the Lord,
Randy and Cyndi
Connor, I am so glad you found out what those things on the sides of your shoulders are - only don't use them to pull any tubes out!
Lori, I am so glad that you got to see this "first", and I know that it must be very encouraging to you.
I wish that I could be with you, but at least Mom is there to help.
Randy, we are praying that everything is going well, and that you also are getting enough sleep.
Our prayers are with all of you, and mostly for Connor that he would feel much much better.
Love, Dad & Grandpa.
That's great about finding his hands! It's such a neat thing watching a baby watch their hands! They become quite enthralled! Sorry to hear there were no answers with the GI tests, but glad to hear he had such a good day yesterday!
Hooray-finding his hands will provide him a bit of entertainment for awhile-until he finds something else-like his feet :)
Wonderful news about his great day yesterday! Hopefully, your GI results will be good as well.
Randy & Lori,
Our heart was so blessed to read the comment from Keith & Tracy Fowler - as yours had to have been! It's just a little reminder how you touch so many people through all the various journeys of your lives. What a living testimony you are!
Love you guys!
Chris & Lisa
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