We got brave and took Phoebe to our annual YWAM Tyler staff conference at a hotel nearby this past weekend. It was the first time since her diagnosis that she has spent a night away from either our house or the hospital. She loved being in a new place with new people and looking at all the waterfalls in the hotel lobby. Nathan’s Mom went with us and stayed with Phoebe and Deacon so that we could attend a couple of sesssions of the conference. Ben and Averic got to do VBS and swim with all their old buddies which was just over-the-top fun for them. It was a great time for everyone.
It was so nice to be surrounded once again by those who know and love our family and to see just how many people are really invested in praying for Phoebe. We couldn’t ask to be a part of a better ministry family, they blessed our socks off!
Phoebe had a clinic visit today to have labs drawn and everything is looking good. She does have a little cold and some coughing and sniffles, but her blood counts are over 9,000 now so her immune system should kick this bug before too long. Benjamin came with me today to clinic and brought his school work. He is growing up so much and is such a big help to me these days. He carried bags and helped me with her feeding pump and entertained Phoebe while we waited for her labs and somehow managed to complete his school work in between all of that. I was so thankful to have a him along today.
On Friday Deacon has another follow up burn appointment. His burns are looking so good and the two little spots that were not quite healed last week look great! I expect that after Friday he will be done with bandages and that will be nice. We will have to keep him out of the sun for the rest of the summer (oh me) and slathered up with sunscreen any time he might be exposed. The new skin is susceptible to bad burns so we have to be extra careful.
On Monday Phoebe will start her next round of chemo and we might possibly be doing it out-patient for the first time if we can get her home-health physical therapy set up. If not, we will go in-patient so she can continue to receive her occupational and physical therapy each day. We are also tweaking her formula feeds through the ng tube and trying to work on cutting back on the formula so she will desire more table food and drinks. This can be tricky with her Diabetes Insipidus because it messes with her fluid intake, but I would love to ditch that little black backpack she is always attached to any day! Having my girl tethered to something continuously is not my favorite. So, here’s to eating and walking! It’s liek starting over again with all of these abilities she once had. Sometimes it’s hard for me to imagine that she use to climb up into her booster seat and sit down and eat a meal with us. I pray for those days again. I might explode with joy when I see her take her “second” first-steps…I can’t wait for that day!
The night has gotten away from me and I’m tired, but tomorrow I want to talk about Ziglar Women, a conference that I am (God-willing) going to be sharing at in a couple of weeks. Writing that here will remind me to talk about it! I can hardly have a cohesive thought these days so I have to write myself sticky notes to remind me to do things like laundry! So, I am reminding me: tomorrow share about Ziglar Women!