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...

Just when you think you're catching a break...

Just a really quick update about today. I called Adyn's ped 1st thing this morn. advice nurse recomm. calling his neuro. who is out of town & I would not hear back until later today (they closed at 2) or until Mon. Unfortunately waiting until Mon. was not going to work since this "twitch" has gotten more frequent. So, I called the ped back she sent the dr. a msg. & he said to go to Scottish Rite ER. Went tonight & he was having his episode a lot while the dr. & 2 nurses were in the room. I hate to say this but I'm so glad that it was happening that way they could see what we were talking about. Our main question for the dr. was he has already had a normal mri is there any chance something could appear between then & now. She said no! She didn't think it was seizers bc he's conscious & his eyes are not glazed over. We talked about his surgery he had in Feb. for his torticollis & about his plagiocephaly. She then decided to call his plastic surgeon Dr. Burstein to see if he's heard of a child doing this after surgery. He was not the dr. on call but the dr. that was on call said it could be the scar tissue forming & causing a "cramp" which is why he's jerking his head to the left (it could be hurting when it happens). There is probably nerve irritation also. We were told to put warm compresses on it then motrin. More stretching & massaging which I've been doing but it seems to be bothering him. If it still persists in 2-3 day we are to call Dr. B back & he will prescribe a nerve medication (oh, I HATE giving my children medicine...just scares me so much). I'm just glad they are thinking it's related to his surgery & not seizers.
Oh, & I would like to mention after checking in a nurse weighed Adyn & got his history. I told her he was dx at 2mos w/torticollis, had the surgery in Feb 19, 2010, continues therapy at CHOA & this "twitching" may be related to his torticollis. She was so rude (I've never had a rude nurse at CHOA...maybe she was having a bad night?) & looked at me & said torticollis goes away it's just stiffness in the neck muscle...I said well, he STILL has torticollis. It was only the way she said it, it was her tone. Really, I think she needs to go back to school or do a little more research on torticollis bc it can cause more then just a little stiffness in the neck.

Just another answered prayer

Today Adyn had his hearing test at ENT of Georgia with Dr. Browning at 1:30 p.m. First we saw an audiologist who was wonderful. She took us to the room & told me to sit in a chair that was in a box looking thing. Okay, if you are claustrophobic I would not recommend getting this hearing test which I think is called the behavioral audiometry. Luckily it did not bother me too much because both of my babies were with me & I could see the audiologist. She played a few sounds & Adyn was to turn his head towards each sound. He did great & turned towards every sound. She then placed little things into his ears to take pictures to make sure his ear drums were okay. Everything turned out great.

We saw Dr. Browning after the test & he was wonderful as well. He was recommended by my friend Jessica whose 2 kids had tubes done by him. He checked Adyn's ears & said he has little ear canals but everything look good & no fluid in the ears. After examining Adyn's ears he didn't seem concerned. He mentioned he doesn't know much about pediatric speech but from experience with family kids & his own they all do things at their own pace. I totally agreed with him! McKenzie did EVERYTHING so early where as Adyn hasn't. Adyn does say mama, dada, nana & babbles a lot (sometimes he gets so into it & I just wish I knew what all the babbling meant). The Babies Can't Wait therapist said once he gets his walking down his speech will come soon after that. I think she's right! Dr. B is sending a letter to Adyn's neurologist who referred Adyn to him. He said if he's still concerned the next step is an auditory brain stem response test. This test would require Adyn to be sedated. They place wires to the scalp & sounds are made into the ears. The test doesn't take that long but Dr. B said he highly doubt he would want that done. I hope he's right because I don't want Adyn to be sedated anymore plus all the other testing was normal. His speech will come soon enough & if not we will see a speech therapist I'm sure (I mean we have already seen every other specialist known).

I want to thank all of you who have been praying for Adyn & the family through this challenge. All prayers are being answered (Jeremiah 33:3)! I really appreciate all the thoughts & messages I get asking how Adyn's doing. PRAISE GOD! Until next time...

We're getting through the challenge...

This morning Adyn had his 3 week helmet scan at Meridian Mark. 3 weeks ago he was at 6.9mm (which means the difference between the front right to back left & front left to back right of his head) and the scan today he was at 6.2mm! He had great improvement for 3 weeks. I am proud to tell you with tears he's now DISCHARGED from the helmet! After his appointment I called my mother-in-law and could barely tell her the great news because I was crying. It has been such an emotional 1st year. When Adyn first got the helmet I thought he was going to be in it for a year or longer. They could not tell me how long he would be in it because they didn't know how much growth he was going to have. He only wore the helmet for FOUR MONTHS! All my prayers have been answered. I was dreading it for him having to wear it all Summer but thankfully no more helmet. I really think things are starting to look up! Until next time...

My beautiful children

Things are looking up

Once again I have not had the time to update the blog. It has been a little over a month since I have been on here and wow have things changed. Adyn's doing great & McKenzie is getting to be such a big girl. I cannot believe that McKenzie is almost THREE & Adyn turned ONE in April. Where is the time going? Well, I'll update you on what has been going on...

• Adyn's continuing physical therapy at CHOA once a week.
• In March had a 6mo recheck with the orthopedic for scoliosis. Still doesn't think he has it but will recheck again in September
• April 14, 2010 Adyn turned ONE! He had a great 1st birthday party on April 10, 2010 & enjoyed eating his smash cake.
• April 15, 2010 Adyn had his 1 year check-up w/Dr. Evans. Everything went great but a heart murmur was heard for the first time.
• April 26, 2010 appointment w/Sibley Heart Center. The doctor was not concerned but wants to recheck him if it's still heard when he's three. Dr. Evans is to keep an eye on it.
• May 6, 2010 eye recheck to check his near & far sight. Recheck in September. The last tear duct surgery was successful :)
• In April we received a letter stating that the neurologist that Adyn has been seeing at CHOA would be closing.
• Helmet scan May 21, 2010. Adyn went from 10.7mm to 6.9mm in 4months! He has made such improvement & is now only wearing it at night. PTL!
• June 2, 2010 Adyn saw his new neurologist & he had no concerns for Adyn except wanting him to have a hearing test. The hearing test is scheduled for June 17, 2010.
• Babies Can't Wait came out on June 3, 2010 to evaluate Adyn for developmental delays. He was only delayed in problem solving but wasn't delayed that much to where he needs their services. He's doing great!
• A 3wk recheck helmet scan June 10, 2010

Adyn is doing great! I am so thankful that he has been showing such great improvement. He's getting so close to walking. Since he got his helmet off he has been saying more things & doing a lot more. He now says mama, dada, nana & attempts to say grandaddy, waves, claps his hands & knows how to get all over the place! Boy is he a handful! He's so sweet & such a joy.

McKenzie has been doing great & being so good to be dragged to all his appointments. She's having her 3rd birthday party soon at Chuck-e-Cheese & very excited about it! She recently had a photo shoot with Helmuth Photography for Classy Sassy Girls (http://www.classysassygirls.com/ website soon & http://www.etsy.com/shop/classysassygirls). This was her first photo shoot & I was amazed at how well she did. She met a new little friend that was her age & enjoyed playing with her in between getting her pictures taken. The photographer took great pictures & her office is filled with amazing photos. I'm going to send updated pictures of her & Adyn to Babes N Beaus & keep my fingers crossed we get a call! Adyn got one call a while ago but that same day found out he had strep so no wonder he wasn't his smiley self.

Sorry I did not go into details about Adyn's appointments. I'm trying to do a quick update while he naps. I think for Adyn's 2nd birthday I'm going to make a book out of what I have blogged so far!

Thanks for all your continued prayers & thoughts. I will post a few pictures above of McKenzie & Adyn. Until next time...