Our family is healthy and happy! Our kids are ages 10,8 (for 9 more days), 6 (for 7 more days), 5(barely), 2 and 13 mths.
Caleb is a total pre-teen. For example, the other day we were all walking to the park when he started hanging back and kicking at a fire ant mound. I called to him "Be careful. They WILL bite you." He turned and looked at me with a LOOK that said "are you seriously telling me this". We have a deal that I will try to remember that he's getting older and doesn't need me reminding him of every little thing and he will work on being respectful when he feels babied. He is doing great in school and really stepping it up at home as we've implemented a way for him to earn money. He has a special bond with Lydia and sometimes she'll fall asleep in his arms.
Anthony is such a great kid. He is a rule follower and tries very hard to please us all the time. His teacher says he's a joy to have in class and he enjoys being one she sets up as an example to the other kids. I have also noticed his tenderness with David. He is great at getting David to eat one or two bites when nothing I've tried has motivated him. He has been begging for his own room since he loves keeping his thing in certain spots. Both my big boys have the best senses of humor and I LOVE hearing them busting up laughing together at some silly play on words they created.
Jentrey is blossoming. I have really enjoyed her added interest in sewing and cooking. She loves to help make dinner and make our house "pretty." She has naturally just taken to it. I love watching her eyes as she intensely stirs the contents of her mixing bowl. I just re-did her bedroom. She is now rooming with Lydia. She adores her little sister. The only complaint I've heard is her wishing she was older. Jentrey is quite athletic and has picked up on things her big brothers have just barley mastered. She is great in school and loves to read.
Luke is growing too fast! He just turned 5!!!! I can't believe it. He is strong willed and sweet. That combo makes for some fun times at home. He will be Mr. independent all day and I can hardly slow him down enough to snag a hug, a day later he will want to cuddle and play all day. He is great at not giving into David. lol! That makes things interesting too, but I enjoy David having someone who is real with him and not afraid to hurt his feelings. David and Luke are very close as David has just started being able to play Lego guys, light-sabers, and sorta wrestle! Luke is just starting to read and I am determined to make the time to practice more with him. His imagination is awesome and I am forever being surprised by invaders or shot with ray guns! Luke is really in to Legos. His birthday is just one week before Christmas and we felt ridiculous giving him pack after pack of Legos but that's all the kid wanted!!!
David, where to begin. He is doing well. We had some events in October and November that have left us feeling nervous and blessed. David is taking speech therapy twice a month. He doen't seem to be behind in anything other than understanding directions. For sooo long we never told him to do anything! They are watching his clarity closely and making sure he stays on the right path as children who never eat orally sometimes lack muscle tone necessary to speak clearly. We have a pet rabbit and David is known to go over to it and say " I pet my bunny!" One of the sweetest things he does is walk over to me and stroke my hair and say "My Mommy." It melts me every time. David also is doing feeding therapy twice a week. David won't eat purees. They spread in his mouth and make him gag and throw up. Right now we are using a dry spoon to help him learn to close his lips and move food into his mouth. He likes to bite food off, We are also helping to strengthen the right side of his mouth. He chews everything on his left side. He will eat about 5-10 peas sized bites a meal. He will drink coconut milk and water only. We are hoping to get him to drink things with significant calories eventually. David has dumping syndrome so he cannot eat or drink things that are super sugary or his blood sugar will drop dangerously low. Choosing foods he'll like is always tricky. David is also doing physical therapy once a week. We are working on stretching out his chest and helping him learn to breath deeply. He has lots of scar tissue that makes it hard. He just got some specially made insoles that help his walk better. We are hoping he'll be able to build more muscle tone in his hips now that his instep is more aligned. Hopefully he'll learn to run and jump this year! David's stamina is limited and getting lower and lower. He'll be ready for his Fontan this summer. I know this seems like alot for an up-date but I really want to remember where we started from this year! David will trot around for a few min and then go lay on his tummy and play Lego guys quietly for a while till he recovers from his "running." The therapists always look worried when he walks into their rooms. "Ok David, lets sit down and take a rest, are you tired?" He breathes pretty heavily. David loves stickers, bubbles, and Backyardagains. His favorite episode is the 1st one. It's about pirates and has really helped him keep his eye patch on! We patch 2-6 hrs a day. They think he sees pretty well. The lower right bit of his preifeal vision will be cloudy forever but we'll figure out how much the coria transplant has effected his main vision is a few years when the graft is fully healed. One of David's favorite things to do is play in my hair. He will graba Leggo guy and weave it through my hair. It saved us when we were inthe hospital but I'm sure the doctors had a hard time taking my seriously with a toddler fliging my hair in my eyes every few seconds! : ) As for this summer, we will see if we try the oblation procedure again or just move ahead to the open heart surgery. at this point we are trying not to think too much about it.
Lydia is busy. She is into everything! She walked early and continues to amaze us with her skills. She has learned she can grab toys from David and take off running. He can't catch her just yet, (maybe his new insoles will help.) She sleeps through the night but wakes at 6 to nurse..still night to me! She is learning to talk and it seems way too soon. David was a baby for so long so Lydia's growth seem super speed to me! Whenever I ask a question to the kids, David yells "Me!" The past few days Liddy has bee yelling "me!" also. I sing songs to David and he fills in the words where I pause. Lately Lydia has joined in..not with words but with sound! Twinkle twinkle little "uuuuuhhhhh," how I wonder what you..."uuuuhhh" It's so funny. She throws fits by flinging herself backwards despite what's behind her. I've had to dive for her a few times! Over all she is very happy and independent. This week she's been teething and has only wanted to be in my arms but that is not the norm. She loves giving kisses and playing clapping games.
Andy and I are holding up! Lydia and David have been getting to bed at a decent time lately (that last hospital stay did us in for a while!) Andy is working alot. In his free time he builds me awesome things for the house (desk and window seats), fixes things (too many to name! ), plays with the kids, helps with homework, makes dinner, lets me get out, and sometimes manages to go for a run. He works himself ragged for us and I'm blessed to call him mine. I keep busy with appointments while trying to squeeze in laundry, cooking and house work. This year will be easier as Lydia and David are getting older. In fact I look back at the past two year and wonder how we managed this well. We have been held up by prayers I'm sure! I think I'll start feeling more on top of things just in time for David's surgery and my illusion of control to come crashing down again. I'm learning to roll with the punches and have joy in the now!
Life is good. We have lots of joys and moments of terror. David's now hooked up to a feeding pump all night. We have spent many nights up every little bit with his pump clogging. We have woken up when his pump has not alarmed only to see that it is running but no food is pumping. David blood sugar has been dangerously low. We have woken to see his tube has come unlocked from his g-button and food is puddled on the floor and he is very very low. It makes it hard to sleep restfully but we are getting the hang of these new adventures. I wake 3-4 times a night to re check every thing. When David learns to eat we won't have to do this anymore but he still has a very long way to go..and yet he has come sooooo far. I can't hardly think of the baby that would wretch uncontrollably with the slightest touch on his cheek. I now watch that same kid laughing with his big brothers and spinning with his sister. I see my children learning tenderness an acceptance on a whole new level. I've watched them become moved with compassion when they hear of others who are sick or have loved ones who are struggling, and rejoice sincerely when they feel better. The joys my children feel with David are so deep and I feel joy all the deeper witnessing it.
I can think of a whole slew of goals and ideas for the coming year and hope to be able to pull off some of them. My word for the year is HOPE. I hope. I have great hope. It was so touching to have a wonderful heart mom give me a decorative tile with the word hope on it. I felt my word or the year reconfirmed. Hope!
I hope to get on top of things, I hope to not neglect anyone, I hope to push hard enough but cut enough slack, I hope to teach my children the important things, I hope to be an example through the hard times, I hope to be perceptive to their needs, I hope to take good enough care of myself that I can pull all of this off, I hope David stays healthy , I hope he does fantastic through his surgery, I hope we don't have complications and I hope if we do they are few and easily fixed. But above all I hope my best is good enough and that I won't ever give up. I hope to always remember my promises to have faith when I'm tired or scared and lean on God.
