Early to bed, late to rise

Bennett's soccer clinic

We got the boys to sleep last night about 30-45 minutes earlier than usual. They were so tired, and we got all Carter’s meds and flushings done early. We thought they’d probably wake up a little earlier, but were pleasantly surprised when they woke up about 45 minutes later than usual too. Luckily, Matt and I went to sleep earlier as well, so our whole family was well-rested. We wish that was the case tonight. After baths and administering Carter’s IV meds, the time slipped away from us again. We used to think our days were crazy and busy, we had NO idea.

Today was the last day of Bennett’s soccer clinic. I hadn’t had a chance to watch him all summer, so Matt came home to stay with Carter while I took Bennett to soccer. He did a great job and was thrilled to get a trophy at the end, which of course he immediately brought home and put next to his SuperSibs trophy. I got to see some friends while at the soccer clinic, which was so nice. Two of my friends have little ones pretty close in age to Carter. It was great to see them too, as I hadn’t in a while and they have gotten so big. It was also hard though. They were running around and playing at the park and doing things toddlers should be doing, and it’s just sort of a reminder of what Carter should be doing too. Instead, he’s pretty secluded in our house and his main outings are going to doctors appointments. He has little or no interaction with any other kids except for Bennett. He is still pretty thin (35th percentile for weight and 85th for height), has no hair and is now loosing his eyebrows and eyelashes, and his walking takes a lot of effort which often ends in falling down. It’s just crazy how dramatically a person and life can change so much in less than 4 months. He is still the sweetest thing and is the same little guy on the inside!! Now, he’s just much wiser beyond his years. We need this call to come so we can begin the process of moving on and get this boy back on track again!!