Spotlight on Hope

I thought it would be fun to give a spotlight on each one of my amazing girls......

Hope 6 years old in first grade. She is a great reader. Has an imagination as big as the sky and the cutest giggle. We like to call her our goofball.

She loves to be outside, mainly jumping on her trampoline. She likes school, but thinks it is long sometimes (imagine what she would think if she went to public school ha)

Hope is caring, mothering and a huge help to me. Here is a story that exhibits all 3. One day Hope and Molly and I were all up, but Claire was still sleeping. I was trying to get some breakfast ready when Hope heard Claire awake and crying out. So she ran into the room, crawled up in bed with Claire and gave her a drink of water (this was when she could still drink from a cup). Claire settled down until I could come in and get her up.

Hope says she wants to be a veterinarian when she grows up, especially for wild animals. She plays vet and doctor often with her dolls and stuffed animals.

A glimpse at life with Hope..... driving in the car singing along to VeggieTales.... "Stop and go with Mercy". So we asked Hope if she knew what Mercy was. She said, "NO." So we explained mercy and how God shows us mercy and how Jesus took the penalty for us, etc. And then we went on to say that we should also show mercy to others, to be like Jesus. She sat there a minute and then asked...."So how come you never show me mercy.... I always get a spanking!" Oh what precious times!

She loves to challenge her daddy to any kind of board game. Particularly Children's Bible Trivia.

This year she is going to go to a Homeschool Coop 1 day a week, participate in Upwards Cheerleading, Awanas, and of course be Daddy's biggest cheerleader.

Dance recital time

Birthday Party Time

Summer fun

Summer Vacation

4th of July!

All the chicks back home

Ok.... here goes....

So we go in Monday (8/17) to the doctor all convinced in our little minds that Claire did not need a "g" button (feeding tube). We had our extensive list of questions in mind and reasons why we thought she did not need this. After spending considerable amount of time with the doctor and quite a few tears on my part. We were convinced that this was the right thing at the right time to do for Claire. So we went straight to the hospital to be admitted. Claire was scheduled for
"g" button surgery and a fundoplication (fix her esophagus for reflux) on Wednesday.

So now what are we going to do with the other girls? Grandma an Pappaw took them to Oklahoma for the week. Fun things planned to keep them occupied. Thanks so much!

Surgery went as planned and she did just great. And she has continued to do well. We thought we would get to come home Saturday, but just after Russ and mom took our stuff to the car they came in one more time to check vitals to find out that Claire was running 102 degree fever! yikes! No going home for us. So she had to be febrile free for 24 hours, so we got to come home today. And Hope and Molly came home too! Boy was I glad to see them.

So what does this "g" button mean for us?
Well Claire no longer gets any liquid by mouth including her medicine. Her "g" button is slightly below her ribs on her left side. We open the port to insert her medicine and to give her bolus drinks of either water and/or a supplement mix for now. She gets these bolus drinks 6x a day to add up to the amount of liquid they have determined she needs. We had been so concerned how Claire would handle not drinking any more because she always seemed thirsty or like she just got comfort from her cup. Well she has not once cried out for a drink or done her open mouth "I'm thirsty" signal. Apparantely she truly was thirsty and we were not adequately giving her enough, or she was aspirating it or she was spitting it up.

Now we have a contented child... no spit up, no chest pain from reflux or aspiration, no thirst, no major crying...... Wow!

And now the bad news

So we have been living on a "blessing" high the past month or so. God has blessed us with a new job, a great house, a new church, a neat therapy group for Claire.... we have just been amazed at the wonderful things God is doing for us. And we are so very thankful for his blessings he has bestowed upon our family. But we are also very well aware that God has not often given us the easiest of routes to follow, sometimes his blessings are hidden in nature. So Russ and I have kind of been waiting for that so called "other shoe" to drop.

And now it has.....

We took Claire yesterday for a swallow function study. This was asked for by both her pediatrician and her pulmonologist. We have been trying to figure out why she is congested often and why she got pneumonia this summer. This tests how well she swallows different consistencies of food and water. Well come to find out....she is aspirating every time she drinks and she does not give us any warning that she has done this... no coughing, no gagging, etc. We tried up to the thickest consistency that you can drink from a cup (honey consistency) and she still aspirated a little. Plus we learned that she does not chew really well, just mashes with her tongue, so she is a 100% choking risk if she were to swallow large portions of food. So with all of that being said, they recommend....

a pureed diet for food, and a feeding tube for liquids.

Not really sure what all that entails, but we go see the doctor on Monday and will probably be admitted to the hospital that afternoon for the feeding tube procedure.

And all along I thought we had been doing so well getting Claire to be more "normal" when she eats. We had worked hard on getting her to eat table food, and now I feel like this is a huge set back. I know it is what is best for her. Obviously, only by the grace of God have we escaped not having more pneumonia issues or even choking. But I am still disappointed.

So I will let you know more after Monday when we learn all about a feeding tube and what kind of adjustments that will bring to our life.

All Settled in?

Well the move is over and we have settled ourselves in....or have we? ha! We still have some boxes in the garage, still have some pictures waiting to be hung and still have a community we need to become involved in.

However, God has already been blessing us in our new place. Not only has he provided us with this wonderful home, which all of us love, down to the kitty cats. But he has provided a little girl, Clare, who is one year older than Hope, who lives behind us right now with her grandparents. These 2 little girls apparently needed each other. Hope needed a new friend in a new city, and Clare needed a new friend other than her grandparents to play with.

God has also provided us with this church here who has the gift of outreach. They have been absolutely wonderful with Claire. The first Sunday, we took her in her chair with the thought that they could leave her in it the whole time and she would be fine. Well the head of the nursery has apparently fallen in love with Claire (of course who doesn't once they meet her) and she saw that she was taken out of her chair, and held and loved on. And today when we went and picked her up after church, Judy asked us if Claire could recognize people and we said yes, we feel she can. Well she said when she went in for her Claire snuggle time, that Claire smiled at her!

This church has helped us move in, invited us to dinner, made 2 house calls, 2 phone calls, numerous cards....etc etc..... makes it hard to want to visit any place else. Hope has really enjoyed her Sunday School class, and has already endeared herself to her teachers. And we have just signed her up for Upwards Cheerleading. Which I think she is awfully excited about.

Russell started school last Monday. The coaches at Pottsboro are on an 11 month contract. He did think it was odd that he was getting to hang out with the girls coaches. No sitting in the football office for him. Which is a blessing, but a huge change for our lives. I'm not sure he really knows what to do with himself right now. Especially knowing that 2 a days starts tomorrow and he doesn't have to do that. He does however start cross country bright and early in the morning.

So I think we are settling in to life here. We have met several other homeschool couples and are looking into joining a homeschool co-op. We are also in the process of talking with a pediatric home health group for Claire's therapy. So look forward to more opportunities soon.

And yes more pictures will come from this summer. But maybe next time.