YES...we have another member of the bipedal group...Kellen is walking!! He took his first steps over a month ago but finally started taking multiple steps consistently just yesterday! What a joyous moment! Carson cheered him along with the rest of us! Kellen has also been doing much better with taking his bottle, eating, and the newest....going to sleep by himself! I know must people do 'sleep training' when their children are MUCH younger but because of our difficulties with getting Kellen to eat and gain weight, we weren't able to. But it has been almost two weeks and now, I can just lay Kellen down for naps or bedtime and he will go to sleep with VERY LITTLE if any crying! Thank you Jesus...you have at least made ONE thing easy for the Clark family...(this is said with a smile : )
Carson...now we are having slight problems getting him to continue to gain weight! Since we have been home, he has gone through periods when he throws up on a regular basis, typically it is in conjunction with changes in his feedings but we really haven't changed the volume of his feeds this time. Ever since Thanksgiving...he has been throwing up at least once if not 2 or 3 times a day. This makes for alot of outfit changes and carpet cleanings and some frustration because we really don't know why. My best guess is that he has been teething more, so his belly is also having the added saliva and secretions to fill it up (sorry I know this isn't the most pleasant thing to talk about : ). So, when Kellen can say "Nope" I don't want any more food/milk...Carson doesn't have a say because we pump the same amount of milk in EVERY time. But with the regular vomitting and also his increased activity level, it also means he really hasn't gained a significant amount of weight for almost two months. We are working with a dietician in St. Louis and may try to switch him over to a higher calorie formula that is made for children (not infants). So we do ask for prayers that Carson will tolerate the switch and hopefully will not throw up as much. I can't even imagine throwing up multiple times a day, every day, and not having anything to clean your mouth out with...YUCK!!!!!! The blessing though is that He continues to be the happiest little guy...he can throw up one moment and then be smiling the next : ) Carson continues to be a HUGE fan of walking laps and laps and laps around the house while someone holds his fingers! His little walk is SO precious but because he has taken to walking and usually has someone to walk with him...he has stopped his progression of crawling : ( I am SO anxious for him to have some sort of independent means of mobility...he is at a stage where he likes to go, go, go but can't do it by himself and this leads to some frustration for him (& us).
I received a rough itinerary for Carson's Cincinnati visit in January. We have initial visits with pulmonary, GI, and anesthesia on January 8th. Then Wednesday will be his surgery day with a rigid bronchoscopy, flexible bronchoscopy, and scope of his esophagus and stomach. He will stay overnight in the hospital and then Thursday he will have a FEES (Fiberoptic Endoscopic Evaluation of Swallow) exam. No times were given (they will be provided about a week in advance) so it wasn't as helpful as I was hoping. But, assuming he stays healthy, we are still set to go January 8th. I'm leaning towards taking Kellen but still ask for prayers in decided this and then also that we see the best of the best physicians in Cincinnati. We will receive preliminary results while we are in Cincinnati but the WHOLE team of doctors will not meet until the following Wednesday and they will come up with the big plan. So I pray these doctors are as good as the one's in St. Louis in terms of being willing to talk to us on the phone and answer as many questions as we have : )
As we get closer and closer to Carson's visit (less than a month away)...I have noticed myself becoming a little bit anxious. I think it is mostly because these doctor's in Cincinnati are supposed to be the best...so if we don't get the news we are hoping for, it will seem more definitive. I have ALWAYS felt and believed that Carson will get his trach out and will eventually be able to eat on his own...but recently I have had this worry of what if this is the 'cross' God has chosen for me to bear...what if I will need to change my idea of the future to include having a child with a trach... because that would mean we wouldn't get to enjoy things like bonfires, skiing (water & snow), canoe trips, swimming, playing in the creek, and I could go on and on of things that Preston and I have always LOVED but I try not to because that only brings me down. The neat thing, the God thing, was a verse (actually two verses) that happened to be on a recent day of the bible study I'm doing... Hebrews 11:1 "Now faith is confidence in what we hope for and assurance about what we do not see." WOW!! So perfect for me...so I will continue to have faith! But then I would hear this little voice "God's timing is not our timing..." I would find myself worrying again because God doesn't always give us what we want when we want and that's where the second verse comes in Acts 20:24 "However, I consider my life worth nothing to me; my only aim is to finish the race and complete the task the Lord Jesus has given me - the task of testifying to the good news of God's grace." And that is where I try to keep my focus because even though I believe at some point Carson will be 'tube-free'...it really doesn't matter if he is or isn't because God's grace is unbelievable and I see it everyday in the lives of Carson and Kellen and I do want to complete the task Jesus has given me, whatever it may be. So with that all said...we can always use prayers to be with us, with whatever news we receive, strength to complete the next day next and to do it with joy and peace! And I will never stop praying and believing there will be a day soon that Carson is completely healed! So thank you to so many that join us in unwavering prayer!
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| The boys loved getting to see Memers and Poppy when they came down to make peanut brittle with us! |
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| Reading with Mimi...they love reading books together! |
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| Endless fun....who knew boxes were SO much fun! We have literally spent HOURS playing with this box |
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| And it lost its side today : ( Kellen and Carson went tumbling when it ripped but not to worry...they hopped right back in : ) |
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