Updates

So I made an appointment to see a different eye doctor. We are going on Wednesday. It will be interesting to see what this new one says. I just left the other one feeling confused and frustrated, with no answers. You shouldn't leave a doctor's office feeling that way. I'll definitely post and let you all know how it goes!

He's also going to start PT soon. The therapist is coming over Wednesday afternoon to check him over and we will talk about goals, etc. that I want for him.

On another note, I had a physical today, and they did an EKG. It came back abnormal, so I get to go and take a stress test in a couple weeks. Yay! (Insert sarcasm) Nah, it won't be too bad. I doubt anything is wrong, but if there is, I would rather find out sooner than later!

A little miffed...

So Joey has been having some issues with tracking objects from side to side. We know he can see, because he looks at us and smiles and stuff, and he can move his eyes up and down, just not left to right. I've been taking him to an eye doc. We had our first appt like three weeks ago and she said, well maybe hes just a bit delayed, lets give him some time to grow a bit. We weren't due back until October. But then she decides to call and make me an appointment for yesterday, so we go, and she starts wondering if maybe he has a TUMOR. I was like um, what? He had an MRI, and that was ok. So she goes off to call Radiology and they look at his MRI and see that there is nothing indicating a tumor. So she comes back and tells me this, and wonders maybe if he's had a small STROKE at some point. A stroke? What the heck. Basically she can't find any reason for this other than those things or a shunt failure, which he isn't have any signs of at all. I'm thinking she's full of it... time for a second opinion? Ugh. She ordered another MRI for him with contrast dye this time. I knew he would have another at some point - she's going to get with his neurosurgeon and see if there's anything particular he wants to be looked at so we can take care of two things at once. Ya... needless to say I'm a bit frustrated.

My big girl!!

She's slept in her big girl bed for the past three nights! I'm so glad! Now we can start transitioning Joey into the crib, because he's getting pretty close to outgrowing his co-sleeper that's next to our bed. I took Emmy shopping so she could pick out her own bedding. They had all kinds of cute things at Walmart. Tinkerbell, Disney Princess, Flowers, Hannah Montana, and guess what she picks. Thomas the Train! Haha - she LOVES to watch Thomas. So I got it for her - I figured it would make her excited about sleeping in it. And it has! She's done so well with staying in bed once she lays down. And she's only fell out once! I tried getting a rail, but it was really cheaply made, so I'm returning it. Kind of makes me sad... my baby girl is growing up!

On another note, I haven't heard from my insurance or Duke about the cord blood infusion... ugh I sure hope my insurance will cover at least part of it.

Happy 4th Everyone!

I hope you all have a wonderful holiday!

Changes

Well, I decided to change things around a bit in the spirit of summer. I thought I needed a nice summery background, along with a new header, which is under construction. One of these days I'll catch Joey smiling and actually have my camera in hand.

And now for a Joey update. Now that he's pooping, he is so much happier! He smiles all the time now! I love them - wide open mouthed, gummy grins! Best thing ever. So he's pooing, his vision is good, his shunt is working, and he can see! I couldn't ask for more. The lady from First Steps is coming over on Tuesday to evaluate Joey to see if he needs PT, which I think he probably will, because he can't pick his head up if it falls over. He can hold it up REALLY well, but its just so heavy that he can't stop it if it starts to fall. I know he's still young, but he's already amazed me with what he can do. He is our little miracle! I feel so blessed to have him :)

We figured it out I think...

So the doc said Joey has something called "Anal Stenosis" which basically means that its too narrow "in there" to allow him to push the poo out the way he should. Kinda funny since the reason for his Hydro is "Aqueductal Stenosis." Anyways, we gave him an enema and a suppository and whoa, talk about poo explosion. The poor guy was really backed up. We also give him a little bit of Miralax and put oat cereal in his formula three times a day. We have to keep the poo as loose as we can until the doc shows me how to use a thing to dialate in there so it stretches everything out. He's pretty sure Joey will outgrow this problem, so in the meantime we just give him the stuff to make it easier for him to go. I can tell he feels SO much better after going finally. Poor guy!!

Hmm...

Poor Joey has been having issues going poo! He was ok for the first few weeks when he was breastfed, but since I had to stop, he's been having problems. The first formula we tried was soy, and he didn't have any problems with that other than being gassy. I thought maybe it was just because of the soy, so I tried a milk based formula. He still didn't have any issues going so I thought I'd try the gentle version of that formula. And THEN he started getting constipated. He would strain and strain until his face turned red and cry because his poor belly hurt. He went a whole week without having a substantial poo, just little bits here and there. After trying Karo syrup and apple juice, I finally had to resort to a suppository, and that did the trick of course. Nothing else seems to help other than that. We've been to the pediatrician a couple of times and... nothing. He went another three days without going so they told me to give him another suppository. Poor thing! We have an appointment with a pediatric gastroenterologist to try and sort this out. It's on the same day as his checkup with the neurosurgeon, so I'm glad to get two visits out of the way in one day. I hope we get this figured out so he can poo like a normal baby!