Wednesday, July 19, 2006
Little Bug Finally Caught On Camera Smiling...
I finally caught a smile on camera. Little Bug just lights up the room when he flashes his grin. He doesn't do it often enough though. We are getting many more out of him than before, but we can't wait for giggles and belly laughs!!! For right now though, this is the greatest thing on earth to show off his grin to the world!!!! Oh how he melts our hearts. I feel all squishing inside just looking at this picture. And if you get the urge to kiss your computer screen go ahead, just remember to take your lipstick off our your husband will get cranky because he has to clean the screen.......Ok, that's one from personal experience!!! Hee Hee
It’s been far too long since I sat down and put my fingers to the keyboard to do an update on life at home with Little Bug. Today I seem especially reminiscent because it was a month ago today that we got our official walking orders from Children’s Hospital after our 111 day stay. In just one short month we have had many “firsts”. We went on our 1st official stroller ride the very same day we came home from the hospital. We strolled around our neighborhood and went to the park and I think both Randy and I were gleaming the whole way. We were as happy as we could be showing off our Little Bug around the neighborhood. I remember that night saying to Randy, “Honey, I think I’m as happy today as the day we became husband and wife!!” He definitely had to agree!!!! Connor has also taken his first trips to the grocery store and even Home Depot!!! We figure he better start getting used to Dad’s favorite store sooner or later!!
I have to tell you the funniest story. One day I had to go to the grocery store, and I was in the produce department and I heard a soft voice say, “Little Bug! Excuse me. Are you Little Bug’s mom?” I turned around in utter disbelief and I said, “Well, yes. Yes I am.” The woman proceeded to tell me that she had been following Connor’s blog for at least a couple of months and she recognized me from the pictures. She began to explain the line of people that she knew that also knew us, but that we didn’t know her personally. As we visited she shared how Connor’s story was inspiring her in her faith and her belief in God. After a hug in the produce isle I proceed to go home. As I drove away from Safeway that afternoon I had to say thank you Lord for Connor’s story touching the world. To have a complete stranger approach me in the produce isle of the grocery store was incredibly touching.
We have made many trips back to Children’s Hospital for appointments and ER visits. Last week when we went for our GI follow up appointment they decided that Connor needed a biopsy to check for milk protein allergies. We went back on Friday to have that done and when we approached the day surgery desk, Paula greeted us and said, “Well hello Little Bug.” I laughed and thought to myself, “Kid you’re getting famous!!” I inquired with Paula and asked how she knew we called Connor, Little Bug. Well, one of our favorite operating room nurses, Heidi, had seen Connor’s name on the docket for day surgery and told Paula all about him. They proceeded to pawn their way through a box of Beanie Babies that they give all the kids that come for day surgery. Heidi told Paula, “We just have to find “bugs” to give to Connor. Sure enough, after my visit with Paula she handed me a little ladybug and the cutest dragonfly. Way to go gals!!! Just the mention of Little Bug around that hospital and somebody remembers him and his story. Sure enough, Heidi was able to be the comforting hands that held Little Bug during his procedure. We got the results back today and sure enough, he has what they call “Allergic Proctitis and Allergic Colitis”. The recommendation is that Connor goes off mama’s milk for the time being and goes on a formula that is specific for this type of allergy. We can’t afford for him to continue with this blood in his stool problem because he could become iron deficient. The plan is to put him on formula up until surgery and then maybe we can try him back on mama’s milk toward the end of the year. It goes without saying that this has been very difficult for me to take, but the Lord has given me perfect peace about it after having many differing opinions get involved. I know that my pumping was not in vein and I am pleased with the amount of mama’s milk he has gotten to this point. Hopefully, he will get back to the mammoth supply stocked up in the freezer. Only time will tell.
Connor has been receiving physical and oral therapy here at home for the past 2 weeks. He is doing fairly well with his new exercises and we work hard with him to build his little muscles in his neck. We have a lot of catching up to do, but we are confident that Little Bug will rise to the challenge and get up to speed in no time. He is struggling a bit with his oral therapy and not liking his binki trainer much these days. He does however, like the fact that we have started giving him baby pears on the end of our finger a few times a day to get him engaged in new tastes. He seems to like this really well. We have been trying to spend as much time outside on the deck as we can. Little Bug loves the fresh air and it is so good for him to be outside to look at new things. He loves to look at trees. He sleeps great after a long evening walk as well!!! We meet regularly with our pediatrician and our cardiologist. They think he’s doing well with his weight gain, 11 pounds 10 ounces as of today. As Randy mentioned in his previous blog, the cardiologist is a bit concerned about Connor’s Pulmonary Hypertension and so he is starting him on new round of antibiotics until his surgery in September. Other than that, life is pretty normal for us at home. I am really enjoying being a housewife and mom. We are finally organized and we have our routine down pat!!! Thank the Lord for organizational bins and checklists!!!!! Anyone with a child with medical necessities will know what I mean!! Morning and evening meds go much easier with a set in stone routine!!! Boy was mom ever right when she said, “Children crave routines.” Connor certainly fits that bill. Even though he sleeps beautifully at night, he awakes in the morning by 6:30 cooing in his cradle. He’s back to sleep by 7:30 for a cat nap. Meds by 8:30 and another morning nap by 9:30-11:00. Then he catnaps throughout the day a little, has a really fussy time during dinner (of course) then meds at 8:30 again a small nap until 9:00pm. Up and alert and playing until 10:30, then out like a light for the rest of the night. He’s just like clockwork and we love him so much!!!! There you go, a day in the life of Little Bug!!!
We were sad to get word on Friday that our precious little baby Sarah, who was Connor’s roommate for some time at Children’s, passed away. She had a two and half month fight with a major heart defect and the Lord saw fit, once again, to call her home to heaven. How we don’t understand the ways of God. Our hearts go out to Adam and Jessica and Sarah’s grandma Carol. We love you baby Sarah. Now that you are in Heaven, please have Stone, Michael and Jonah watch over you on the playground near the Pearly Gates!! Rest in the arms of Jesus and be healed sweet little one!!!
For those of you that have followed the blog for sometime, you may remember seeing comments written from my dear friend Ruthie! Please say a prayer for her and her family as her Dad, Ed went to be with the Lord on Sunday. As his wife Nancy said, “He is finally healed and walking without his braces and crutches.” Our love and prayers go out to the Livingston’s in Wyoming!!
Randy and I were commenting just the other night that this year has brought with it many levels of grief for us. We have battled through disappointment, depression, unanswered prayers, death, severe illness and separation. What a trying 7 months it has been. We are realizing a whole new perspective on God’s Grace. We have yet to understand the why’s, but we are beginning to understand that what God wants from us is that our hearts and minds be totally surrendered to him and to his ways. “No ear has heard, No eye has seen what is in store for them that love God.” We don’t know why God has allowed our eyes to see such grief or why are hearts have cried for several days straight, but we do know that God is building us up to be more compassionate people. People more concerned with the hearts and souls of others rather than the tasks we get ourselves involved in. People who realize that loving without limits and loving in spite of a situation are more blessed than anyone else. People who are generous with kindness and who take great delight in the smile and the laughter of a child. We are becoming better people because of our son, Connor. Little Bug will one day here the story of his rough beginning to life. He will also here that his Daddy and Mama wouldn’t change a single day of the journey because it has made us who we are today…..People of destiny and people who are richer in faith from this very experience. Thank you Little Bug for this most gracious and important lesson in life.