God is GOOD!

Adyn has been showing great improvement lately. He now goes every other week for therapy which is such a blessing after going every week. He continues to wear his Benkin vest and tot collar. The therapist said his walking looks great! She had told me a while ago that with his delays he would probably walk at 15mos. She was RIGHT! He really figured the walking thing out around 14-14 1/2mos. He now trys to run from me when I need him...such a little wild man!

On Monday Adyn had his recheck neurology appointment and everything went GREAT and he weighs 24lbs! I couldn't be more thankful that he is now discharged from seeing the neurologist. That's one appointment I can now take off our appointment list. I did mention he still has head nodding at times and he said all of his testing is normal and he's not sure what it can be. If his pediatrician is still concerned in October when we see her he would be more than happy to see him. He said the only other option we have is to put him in CHOA for a 24hr monitoring but that is not necessary. I try not to pay attention to it and not worry but deep inside I do. Adyn doesn't seem to do it as often as he was so that's a plus.

Adyn's speech is starting to come along which we were told once he starts walking it would. He says mama, dada, nana, attempts to say grandaddy, whoa and the past week it has sounded like he says wha you got, look I got, I got it...we aren't sure if he's really saying that but it sure does sound like it!

He's doing great and I'm so thankful for all the continued thought and prayers for Adyn!

McKenzie Grace

McKenzie Grace Taylor is 3yrs old! Wow, time sure does go by fast. McKenzie has been so much fun & the BEST Big Sissy to Adyn!

Mommas mini shoot

I love, love, love my new camera. Did I mention I LOVE my camera?

"head nodding"

Are you ever left undiagnosed? Well, Adyn is with his "head nodding", as the doctor called it. Spoke to the doctor & he said the EEG was normal, he doesn't think it's any thing related to epilepsy & the only other thing to do would be to admit Adyn to CHOA in their EEG monitoring room for 24hrs. I do not find that necessary nor do I want to do that since all that would be done is another EEG & video. The doctor asked me to send in a video & I told him 3 have already been sent. I guess we will just wait & see if it goes away. Adyn's scheduled in August for his regular check-up with Dr. S so I'll just see if he's still doing it at that time. There is nothing worse than a doctor having no clue what it is & being left undiagnosed. I pulled up a video on You Tube (this is where the doctor wanted the videos uploaded & sent from) of a little girl doing the same thing. The mom never posted if she was ever diagnosed & the video was from 2006. I've said it once & I'll say it again I do not think it's anything serious but I want to know what's causing it. Like a friend said the other day "no news is good news" sometimes. I guess I'll just live by this for now. Until next time...

Good 'ol doctors...

Do you ever get frustrated with a doctor's office? Adyn's EEG was done on Saturday. We were told we would hear from Dr. Silverboard Tuesday or Wednesday since he was not there at the time of the EEG. Well, it's now Thursday & I have yet to hear from him or his office. I called to ask about the EEG & see if Dr. S had a chance to review the video. The receptionist said the EEG was NORMAL! I figured it would be considering he had a normal MRI December 16, 2009. I asked what he thought about Adyn's head shaking, what may be causing it & why is it happening. Well, the only answer I got was the receptionist reading Adyn's chart from his appointment June 2nd. The head shaking started after that appointment & I'm assuming the doctor saw Adyn's EEG normal & left it at that. I know he has more severe patients to deal with but he ordered the EEG & I should receive an answer. I'm so frustrated paying these doctors & no answer. I know it's nothing serious but I want to know what it is. Hope to get a call back today or tomorrow morning. I've done all that I can & was asked to do, videos, EEG, appointment with the plastic surgeon, massaging his neck and an ER visit.

Ever feel like you have to vent a little?! Well, that's what the blog post was all about :)

Until next time...

Tuesday is therapy!

My Chunky Little Man!

Today Adyn had physical therapy. I wasn't sure how he would do since we've missed 2 weeks due to vacation but he did great! The therapist said he looks good & he even took 3-4 steps for her (she wasn't even trying to get him to walk). He's getting a little closer to walking each day. I'm ready for the walking but then again I'm not! My little man is growing up too quick. Adyn's therapist taped him today because his left ribs are turning out again. He has been taped a few times before. Once his head is straight his trunk area goes back to the way it was before. As I have mentioned before Adyn was also born with a rib that is very short & didn't form all the way. She doesn't think this has anything to do with it. I'm also hoping he doesn't have scoliosis. So far all the x-rays have been negative for that (recheck in September). But I still wonder about that because of this. Next week he will start wearing his Bendik vest again to straighten that out. Other than his trunk area he's looking great! He continues to do well with his stretching & I hope it stays that way.

I'm still waiting to hear from the neurologist on Adyn's EEG results & to see what he thinks. Adyn had 3-4 episodes yesterday. One of the times he did it was while he was wearing his tot collar & it forced his neck to stay up. Today he's done it about 4 times. I thought it was going away since he only had 1 episode Sunday. Who knows what it is? Some people think he's shaking his head "no" but he's not. I'll update as soon as I hear. Until next time...

He likes to scare his Mama!

Before we left for vacation Dr. Pitts wanted us to take Adyn to Scottish Rite ER since his neurologist was out of town & we wouldn't hear from him until Monday. All the way to Florida & while we were there I just worried about my little man. The "tic"/"twitch" he would do just scared me & I really didn't think it was related to his torticollis like we were told. On Monday, June 20th the neurologist called & said to schedule an EEG to make sure it wasn't related to any type of seizure. We came home early from vacation & took Adyn to his plastic surgeon, Dr. Burstein before doing any testing with the neurologist. He said Adyn looked great & he's never seen that. Dr. B recommended us follow up with the neurologist because it has nothing to do with the torticollis.

On Saturday, June 26th we had Adyn's EEG & nothing abnormal was showing up (the doctor was not there but the lady doing the EEG said nothing was standing out to her). They were able to video Adyn having his "tic"/"twitch" while having the EEG. The doctor should be calling the beginning of the week to go over the results. It's the strangest thing & almost seems as if he's shaking his head no but he's not because there are times it involves his entire body. Today Adyn has had ONE episode of the "tic"/"twitch" so maybe it's something he's going to outgrow. I think he likes to scare me & make me worry! Hopefully he will continue only doing it once a day or even stop. I hope the neurologist has seen a child do this & will be able to diagnose what it is or know why it's happening. I'm just happy that he hasn't been doing it throughout the day & the EEG looked okay. Will update when I hear from the doctor. Until next time...