Borderline syndrome

Charlie has been home for 6.5 weeks! In that time he's gained almost SIX pounds. He's getting fat! His thighs are starting to jiggle! He looks much different than the 16 lb sickly child we brought home. He's so full of life! And so darn cute.

Charlie has Borderline Syndrome*. This occurs when a person has several issues that can be described as borderline - symptoms that don't offer a certain diagnosis, but need further testing to "rule out" an issue or "just to make sure". You also may often hear "wait and see".  Charlie has already had several f these issues, and luckily so far all further testing has ruled out problems! We've got two rule-outs left: a sleep study and a sedated ABR (hearing test). Charlie failed one of his hearing screens today, which *may* indicate a mild hearing loss. Really, it's not a big issue because he can hear quite well. He can hear his dad whisper his name from a few feet behind him. So even if Charlie does have a mild hearing loss, so although it's a possibility he'd need hearing aids, it's not likely. But he'd sure be cute if he did need them. :) We won't do the hearing test until after his heart cath and sleep study. The ENT wants the cardiologist to clear him for anesthesia first, and if Charlie does have obstructive sleep apnea, then his tonsils would have to come out too. BUT, I think Charlie will just be adding all of this to his "ruled-out" list! He's so much stronger than he was 6 weeks ago, and I'm really not seeing the same sleep apnea symptoms that I did when we first got him. Of course, when I checked on him last night, he wasn't breathing. Yeah...there is that. Charlie is just a man of IFs.

June is looking much more relaxed than May. We only have a pre-op appointment and his heart cath scheduled. I also have to find a dentist for him, and get him started in therapy! I've been so wishy-washy on picking a private therapist. I don't know which one is the BEST. He'll be getting therapy through the school district, but that won't start til fall. And I am not looking forward to sending Charlie to preschool in his current state! He's Tuff, but oh so fragile and tiny. Ack. I'm going to have a preschooler! That's too much for my little brain. I'd better just go to bed now.



*Borderline Syndrome is made up.
Because I know there's 1 or 2 of you that wouldn't catch that. :)

Grow Charlie grow!

Charlie is doing fantastic! I knew within days of meeting him that he would really take off once we got him home. And he did. He's up to 20 lbs!! His spine isn't creepy anymore, and his ribs have filled in. He looks great. He's eating well, as you can see! He's doing much better with being spoon-fed. It's definitely not his favorite, but he's not fighting it as much anymore. And we discovered Charlie LOVES mashed potatoes! He also seems to like lemon-flavored things, which I find odd! Charlie claps when we say "yay" or "good job". He can hold his own bottle sometimes, and he signs "eat" and "milk"! He's my superhero. :) He had his VCUG today, and he does not have urinary reflux, even though he did have an abnormal ultrasound. I'm not sure if that was related to the infection, or what. But it does mean we can take him off the antibiotic, so we're down to only 4 meds! One thing I've learned: only listen to the doctors who specialize in whatever they are talking about! For example, the cardiologist heard the results of Charlie's ultrasound and said "Whoa! You only see that with something like Grade 4 reflux! Whoa!" Actual Kidney Specialist: "It might be reflux, it might not. We'll test and find out. Not a big deal." So, parents, don't freak out unless the doc knows what they are talking about. :) I went through something similar with Brennan. I wish everyone would be on the same page!

Brennan is SO over Charlie. He likes him well enough, but he thinks it's time for Charlie to go back where he came from! He's being intentionally rough with Charlie, but then he'll turn around and bring him a toy. We've started a "No Touch" rule between the two of them, because you never know when a gentle pet will turn into a pinch. Today Brennan was giving Charlie kisses, so I think there's hope. Even though he DID throw a toy at Charlie's head. Multiple times. It doesn't help that I almost never have one-on-one time with Brennan. Hopefully we'll be able to start fitting some of that in!

Brennan is picking up signs as soon as you teach them to him! His new favorite is "apple". The only reason he doesn't know more signs is because we aren't teaching them to him! He's starting to talk more, too. Ee-oh for elmo, Go-gee for going (outside), Mama (!!!), Wampa (grandpa), Sa-ee (Sadie), etc. He repeats more too. I'm going to really miss Brennan-ese, though! It is so stinkin' adorable. He talks ALL the time, babbling away, with inflection, chuckles, and gestures. My favorite is when he tells funny stories! He really appreciates when you respond appropriately. Oh, he's so cute. I have adorable kids. :)

Back to Life

So...this time I was away for awhile on purpose. There was too much stress going around. After Charlie came home from the hospital (he ended up staying 8 days) I let all the stress hit me so I could work it out of my system at a "safe" time (i.e. when everyone was happy and healthy!). But life has returned to normal. Our new normal, anyway!

Charlie is doing very well. He is up to 19 lbs already! This kid does not have a problem growing. :) He thinks he is hungry ALL of the time. I think once he gets used to having enough food around he'll stop freaking out when he sees his Pediasure! Note: do NOT let Charlie see the Pedisure in the cart at the store!! Charlie really seems to be enjoying family life! He still likes his brother, although he will cry if Brennan is too close for too long (Brennan is a bit clumsy!). And Charlie learned to clap when we say "Yay" or "Good job"! It is so adorable! We were teaching him to hold his own bottle, but that went out the window because he keeps dropping it to clap for himself! His smile is amazing. And his little giggle!

Charlie has a few more specialists coming up this month: cardiology, sleep consult, and ENT, as well as a VCUG. I'm anxious for the cardiologist appt because we should be getting a plan for his heart catheterization then. We really don't know what treatments we will do for Charlie, or if/when he can have surgery, until the cath is done. In fact, they won't treat him - besides the lasix - until the cath, because they want to see what he is really like. So I really want to get that done! He already had a swallow study this month, and did fine. So that's one less thing to worry about!

Brennan is doing so well with Charlie! It's amazing. Before, he didn't like me holding other kids, or other kids playing with his toys. But he is so sweet to Charlie! Brennan will bring Charlie his toys and wants Charlie to play in the ball pit with him. He gets upset if he thinks we are leaving the house without Charlie (it's really cute!), and once when Charlie was upset, he brought Charlie's bottle over and stuck it in his mouth! Brennan will get too rough with Charlie, but he just doesn't understand how strong he is and that Charlie might have feelings too! For example, Charlie might not WANT the ball Brennan is shoving in his face! (Ok, my parents have this small dog that Brennan adores. He likes to play with the dog, which usually involves Brennan putting the toys right in/on the dog's face. Sometimes, he throws the dog's balls at her. This is how Brennan thinks he should play with Charlie, too!) It's very sweet to see the two of them together. Brennan seems to just know that Charlie is "his" and that he needs our special attention. And Charlie is delighted to have someone his size to watch! They are already best friends for life!