Quick update

I finally finished the invitation for Gabe's celebration - I did it in the digital scrapbooking software I finally broke down and decided to invest in. I love it - less mess than conventional scrapbooking. I posted a copy to the left, but it really isn't easy to read. If you did not receive an email copy and would like one, email us at the address posted below the invitation and we will send you one. We will send one snail-mail too if preferred - or if you know someone that doesn't email and you think they would like a copy in the mail, we can do that too.

On Thursday, Kendrick had his four year check up with shots for kindergarten - even though he still has pre-k next year. He didn't cry at all. For being such a big boy, we took him to Toys R Us and he picked out the announcer cars from the movie Cars. Still loves that movie!! Gabe was also weighed and managed to pick up 2.5 ounces in the past two weeks. Not huge, but still progress, or at least no decreases.

I am hoping to accomplish a lot today, since we actually don't have anything scheduled - so that is it. Have a great weekend!!

Whirlwind week

It has been an incredibly busy week. Kendrick turned four on Sunday and we celebrated by taking the camper to Harmonie state park for the weekend. Family and friends from school joined us in a very damp and chilly shelter house at the park on Saturday for burgers, dogs and cupcakes. Despite the uncooperative weather, the kids had a good time and the sun managed to squeak out between the rain drops for the last half hour we were there. Gabe came out for Saturday, but that was enough exposure. We thought we might let him stay in the camper one night, but it didn't take but a brief nap time that afternoon to realize neither he nor us were ready for that. He went home with Grandma and Grandpa for the night. Leading up to that weekend, the drywall went into the bathroom, but with the preparations for our weekend excursions and a busy work week, that project went on hold. I took off work Tuesday to paint. I primed Monday night after the boys went to bed, got the first layer on in the morning and the second after the boys went to bed Tuesday night. So the bathroom is painted. Josh picked up the cabinets and countertops this morning. We have the light fixtures and faucets picked out too. The next couple of days will hopefully bring a lot of progress - I am anxious to see if our vision turns out as well as we have hoped. I am also anxious to have the biggest bathroom back in service!

Tonight the boys were both in their first school musical. Preschool sang a couple of adorable songs (nothing I had heard of before) with hand motions on stage and there was a joint production of "Stone Soup" with the kindergarden and first grade classes. It was fun to watch and the boys were so proud of themselves. There is an encore presentation tomorrow which Josh and Grandma will get to enjoy. Grandma stayed home with Gabe and Josh had to work. I also got it on video - so if you would like a copy... (wink!wink!) That more or less sums up the last week. Tomorrow is Kendrick's four year check up and Gabe's biweekly weight check.

Ok - I have been up to midnight the last two nights painting and ironing shirts/pants for the musical, and Friday night was even later decorating cupcakes. I am operating on a bit of a sleep deficit, so don't be too critical of the typos. I'll proofread and post pictures tomorrow, maybe...just don't be too critical. good night all!

It's been a busy week. Nothing out of the ordinary, just life as usual - which is usually busy. Gabe and I have been battling colds, so neither of us have gotten a lot of sleep the past several days. And since Josh is home at night now, neither is he. Mine might be allergies, which I have been denying I have for years. Gabe is also doing phenomonally well eating - still taking over 24 oz per day from his cup! The down side of this is that he wakes up to eat at night more like a two month old! At least once per night and sometimes twice. It's difficult to complain about the lack of sleep when he is doing so well orally, and really making tracks around the house. Justin promised to watch Gabe for me while I brushed Kendrick's teeth and when I got back - approximately two minutes later - Justin had coaxed Gabe all the way across the living room and into the entryway by dangling a ball Gabe wanted in front of him. It's the farthest we've seen him go at once, and Justin was giggling with glee and pride that he had something to do with it. It made me smile. Gabe probably would have kept going down the hall like Justin wanted him to, but he became fascinated with the rug in the entryway. All too soon it was time for bedtime stories. I say all too soon not because there wasn't part of me that was really ready for them to go to bed so I could finish up some things and head to bed myself - that would be untrue! I say it mainly because dinnertime was a yo-yo of Justin's up and down moods, which happens from time to time, and it was nice to see that the evening was going to end on a high. Both older boys were very tired and moody actually. It was just fun to watch all three of them smiling and laughing over Gabe's accomplishments.

Speaking of which, Friday was Gabe's weight check. He weighed-in at 19 lbs and 5 oz. So, he made a nice gain in weight, but I am not sure there was much of a gain in percentile. That's ok. I think there isn't really an issue with his current percentile ranking, just that it shouldn't drop anymore. Ginger (OT) continues to give us tips for "fattening him up", with the caution that too much weight gain will interfere with all of his newfound mobility. It is such a balancing act, isn't it? Well, we are no strangers to balancing acts! We all do it every day. I think we are in a good place and balancing as well as we can. There is still the shadow in the corner of the mind, the knowledge that things can change and the balance shift...but for now we are enjoying where we are. Sometimes I struggle to live in the present, so this has been an excellent excercise in doing just that. Each new moment brings new experiences. An exhausting round of tantrums can still yield a happy evening of giggling boys...

O Lord my God, When I in awesome wonder,Consider all the worlds Thy Hands have made;I see the stars, I hear the rolling thunder,Thy power throughout the universe displayed.
Then sings my soul, My Saviour God, to Thee,How great Thou art, How great Thou art.Then sings my soul, My Saviour God, to Thee,How great Thou art, How great Thou art!
When through the woods, and forest glades I wander,And hear the birds sing sweetly in the trees.When I look down, from lofty mountain grandeurAnd see the brook, and feel the gentle breeze.

Seeing the boys experience spring in its earliest blooming, such words and melody resonate with me. Such moments grab a parents' heart and give it a little squeeze. I love when the daffodils bloom - partly because they are first to welcome spring, along with the crocus. When the daffodils bloom, spring is officially here. There is also something about the sunny yellow blooms that lift the spirits and bring happy thoughts of warm breezes and early spring jackets - heavy coats are thrown aside and the oppressive heat of summer is still far off.

Yesterday we were able to get out and walk after dinner before getting everyone ready for bed. It felt so normal, so free! A neighbor out walking stopped to chat and fussed over all of the boys, especially Gabe, as babies usually attract the most "fuss". She didn't know his history and even though we don't mind sharing, it was also nice just to be the family down the street with the baby in the stroller, like any other.

Gabe is now starting to figure out how to dig in his knees and feet to get around. He doesn't like dragging the G-tube, as he would in the more typical "commando crawl", so he has figured out an interesting way to shift his torso and hips while using his arms, hands, feet and knees to get around. I started yesterday and he is already perfecting his technique. I think he is literally going to 'take off' from here. Even as we clap our hands excitedly and cheer him on, there is a little inward sigh thinking of all that has to be moved up a level to keep it out of reach. We have been preaching to the older boys about keeping their stuff picked up and out of reach for Gabe's safety, now those efforts will be redoubled. Here we go - we have a budding crawler in the house again! I remember the first time Kendrick really took off and we didn't realize he was as good at crawling as he actually was. We went looking for him and found him in the bathroom pulling all of the wipes out of the cannister. We had a good laugh and heaved a sigh of relief that was all he had gotten into. It also made for a good picture. The wipes are currently in the living room, so that one may be recreated without a trip down the hall.

I have two more stories to share, and then i am done for today. First: We received an email and photo from nurse Laura - she delivered a beautiful and healthy baby boy. Over 7 lbs and absolutely beautiful. They named him Jackson Oliver - congrats to Laura, Bob and little Jack. Second: back in the fall we read an obituary for baby Colin from Evansville, born in mid-June. He had died from a heart condition at Riley and we were just sure it was the baby boy of one of the families we had gotten know at Riley. We couldn't remember his last name and the obituary had very few details, aside from what I already posted. I kept thinking it couldn't be him as he had been doing so well the last time I ran into his Dad in the grocery store parking lot, but the facts sure seemed to line up. Today I ran into Colin, Mom and Dad in Target and can't remember the last time I was so happy to see anybody. He had repeat surgery to repair the two holes in his heart back in December and is doing fantastic. He looked great, as did his parents. I told them about the obituary and how happy I was to see them. It doesn't change the fact that another family lost their son, but for a moment I selfishly felt joy and relief for the family we knew. Ok - it is past my bedtime. I have more pictures to post below, but please be patient and give me a day or two. For those of you who print some of the pictures, I will post the two included in this post down below as well.

A little change

I read the last post again and decided to change the title. It was very late and I was very tired and was in a hurry to get a long post going so I could get to bed. I had just checked email before posting and was intrigued and excited that there was such a thing as CDH awareness day - so I typed a title for the post in a hurry in my excitement over the awareness idea, not the defect. In reflection, "Happy CDH Day" just doesn't sound right. It isn't as if we celebrate Gabe's defect as an ethnic difference, that just misses the point. We celebrate his life and our journey together and what that journey has brought us. We don't celebrate the defect itself. We celebrate the wonder and miracle of the human body and how God's hand has healed us along with Gabriel. We don't believe or accept that God made Gabriel or any of us to suffer or that this little change in development which had such far reaching affects was the blessing - that came later. We believe He was able to use a difficult time and painful experience for good. We celebrate what has come to us, not necessarily how it came to us. We celebrate the awareness of something we had never heard of before Gabriel - maybe awareness of this defect will help researchers figure out how it happens. As a mother responsible for growing a life inside of you - it is difficult not to wonder if I did something or ate something at just the wrong time and it allowed for this flaw in development. Is there some tiny gene that we passed along? Research has linked up folic acid and spinal chord development - so is there some supplement that can help prevent cdh? Some food or chemical that is ingested? Nobody knows. It's just one of those things and I realize that dwelling on the cause doesn't help anybody - not me, not Gabe. But I wonder sometimes, sometimes in those quiet moments by myself, or watching my children sleep. A tiny "why?" whispers on the edge of my consciousness. Awareness is a good thing, or can be if handled for the betterment of all. I didn't ask why for a long time, couldn't face the possibility that I could have done something to cause Gabe's suffering, or even end his life. But as time goes by, as he gets stronger and we all get stronger - I think the voice gets a little louder because if someday that little, single word question could have an answer, then there would be fewer babies born with such a battle to fight. Or even if the "why" isn't answered, there is the question of what now? It has been said that many learned valuable lessons from Gabe and those lessons may save lives. If that is true and even one baby is saved from death, even if not from the struggle, then there is greater purpose in all of this. We were incredibly fortunate and blessed to be put into capable hands who could do what most hospitals could not do. Maybe awareness would bring lifesaving research and lifesaving technology to more hospitals and more babies. Last Thursday we were in the pool area at the hotel, letting the boys have some fun - and wearing themselves out completely. I was sitting in a chair with Gabe, who was in a swim diaper with his Gtube and scar revealed. A woman who was admiring Gabe's smiles and excited arm waving at his brothers came over and noticed the tube and scar. She begged my pardon and asked if I minded telling her about Gabe. (I know, you feel for her already). I shared the highlights and she amazed me by telling me of a friend of a friend who had a baby in Florida with a left DH, which is the most common and often more severe and more complicated. The baby's defect was so severe nearly all of the abdominal organs were up in the chest cavity and it was determined that surgery on the fetus was the only option, or all would be lost. They didn't believe this child would even survive to delivery without surgery. From what I have read online (so I am not professing to be the expert) - this is extremely unusual, most are carried to term, delivered and then assessed. The child is now 2 or 3 years old. Amazing.

So it was not the CDH I was expressing my happiness for, but the awareness and what that awareness could bring.