Appointments, Appointments

So this week has been chock-full of appointments. I had to take Lukie to the pediatrician on Monday for high fever, and he came home with double ear infections. But that's better than the flu or strept like Joshua had the week before. Then on Tuesday we had to take Joshua to get a hearing check and to see the ENT because he's been having blood come out of his ear, followed be a foul odor! To come find out, his tubes were trying to expel themselves, and couldn't come all the way out. I guess it was scratching his ear drum and causing the blood and odor. He got one tube taken out and the other should be out by the end of the week. But the ear drums look good so that's a weight off my shoulders. I'm just glad he didn't inherit my ear problems. Then it was my turn for the doctor. I've been having a cold for about two weeks now and that led to an infection in my sinus'. And then yesterday we had our three month check up with the neurologist and orthopedic doctor.

So the neurologist gave us the go-ahead to start lowering the dosage of his seizure medicine. He said he wants to go extremely slow to lessen the possible side effects, but he only went down 1cc and we don't go back for three months. So at this rate, he'll be off the medicine by his 4th birthday. :) But I don't mind, I'm with him on "it's better to be safe than sorry!" He was very surprised, but pleased to see Lucas doing so well. He didn't expect him to make so much progress physically in three months, so he wants to get another EEG done to see if his brain is progressing at the same level. Great news! But then, when something goes well, something always goes wrong…The doctor told me he's closing his practice! I almost cried in his office; in fact, I did whimper and I think he thought I was nuts. :) He then proceeds to tell me that there will be another epileptic specialist coming there, but she won't be taking any pediatric patients. So then he basically tells me that he wants me to go back to our old neurologist and that he's been sending her copies of everything he's done so far. So he must've known he'd be leaving soon. It's just so frustrating because I really liked this doctor. We're still going to see him one last time before he leaves and have that EEG done with him too. I just hope that Dr. Africk takes us back and doesn't give me lip about leaving. I'm so not looking forward to this, but kind of feel like I'm stuck. I was told the waiting list to even see a new patient at Childrens is 3+ months, and that leaves Baton Rouge. Just keep those prayers coming that we transition well to new (old) doctor.

The orthopedic appointment went great. So great in fact, that we've moved from 3 month visits, to 4! They did more x-rays of his foot and hips. I know the routine, so when we got in the x-ray room, the tech looks at me and asks the routine question, "Is there any chance you could be pregnant?" But instead of asking me if I was pregnant, she asked me if there was any chance I could be drunk right now! Isn't that the funniest thing ever? I laughed the entire time we took the x-rays. The lady was so embarrassed; then she finally tells me, "I'm just excited that tomorrow is Friday!" Wonder what she's doing tonight? haha

We go to the room and the NP pulls up the x-ray of his hip and I instantly tell her how great his hips are healing. She just looks at me and smiles and says, yes they are. Then she pulls up the foot. They always say that's healing well but honestly, it just never looks right to me. So when the doctor comes in the nurse tells him she's thinking about hiring me to read x-rays now because I knew by looking at the picture that the hips were healing! :) What can I say? I'm a nerd, I love looking at the pictures. We only had one issue--that his feet are starting to turn out when he's walking now (in the walker, don't get too excited!) but the doc says that's normal in this situation and the more weight bearing he does on the feet, the more they will turn normal. I think it gives him the feeling of better balance having the feet out.

Then this morning, after breakfast my man looks like he's tired so I went lay him down. It felt like he was getting warm so I gave him some Ibuprofen. Well about an hour later, I get him up and he's burning up. I took his temperature with my neat head scanner thermometer, and it read 104.4. So I checked the other side, 105.8. I just knew it had to be wrong. So I finally got another temp and it was 102.7. My poor man, I sure hope it's just the ears and nothing else coming on. We sure don't need any hospital visits. (You see, I pressed my luck with my last entry!)

But all in all, my man is starting to get the thumbs up all around. We just have to get working on the drinking liquids and eating more solid food and snacks so we can get rid of that feeding tube. And hopefully this bug that has been everywhere lately will leave and we'll all get better. Here's to hoping next week is a bit calmer!

Love Y'all!

Here's a few pics for y'all. If you can't tell, he loves his noonie.


Today with 103 fever.. What a goofball


I can sit up, so I will


This is how I find him every morning, and every night before he falls asleep


A little QT with my brother


And this is how he acts when we're out and someone tries to give me a break. Thanks anyway Grannie! He does this with everyone Mrs. Wanda, not just at your house! :)

Still Kickin' Chicken

So just in case you're wondering we're still around. It has just been so crazy around here without Josh that I haven't a moment to myself. And on the rare occasion that I do get a break, I crash.

For those of you who are wondering, Josh is doing good in Malaysia. He's tired and oh so ready to come home, but all in all, we've all been good. All of us have been doing good, except for little Lukie…he's been doing GREAT!

So maybe I shouldn't be saying this out loud, but it seems that we've finally hit that upswing where everything finally seems to be going right. Don't get me wrong, it's not a steep incline, but it's an incline none that less. I mean, in the last eight months, we've gotten the trach out, started rolling over (constantly), he's been able to use his hands--opening, closing, grabbing items and now finally letting go!, he started weight bearing, sitting up with a little help, standing up with a little help, got the surgery to correct his foot, hasn't had a seizure in 4 months! (can I get a hallelujah!), standing in his walker and now moving forward in it….and this past weekend, for the very first time, he finally sat up on his own! And since he sat up the first time, he's a champ at it. He's even learned how to lunge forward into a diving roll and get back up into a seated position in no time at all. :) I swear, I put him in one spot, and before I know it, he's across the room.

This is huge stuff people!

He really is doing great though. And he's going to be 2 in a few weeks. It's so hard to believe. The time has really flown by. It really is crazy how time seems to be passing right before our eyes. I mean, one day, I have someone telling me that I won't be able to take my baby home, and the next it's his first birthday, then another blink of the eye and it's he's two.

Well I have so much to say, but in between helping a friend, talking to my sister in law, and putting the babies back to bed about a dozen times.. my night has come to a close. Ahh, the life of a single parent. I feel for you guys. I don't know what I'd do if I had to do this alone all the time. Don't get me wrong, three months is a long time, but it helps knowing he'll be home soon. And we're so ready.

So since it's been a while, and I haven't really posted much this time, I'll put up a few pictures from the very beginning that I've never shared with anyone before.. and the latest video of him sitting up. But just be aware, the pictures of him do not look good, and the video quality is poor. But I hope you enjoy. Thank you again for all the prayers, this is proof that God is on our side.

Love y'all!

My little NICU baby!


The calm before the storm..


Where it all went wrong.


This is right before we got the trach put.





It was truly amazing how much more alert and how better his color was the instant he got his "bling" (a.k.a. the trach).



So now that you've seen a little look into the beginning, take a look at how awesome he looks now!