Tuesday, March 30, 2010

Happy Boy

My happy boy today, he thought I was pretty funny.  I just love to see him laugh, he has a lot to be happy about. 

Thanks Hannah for the tip about the Carnation Instant Breakfast - success!.  I added it to his milk and he doesn't seem to mind at all.  It's great because it adds the extra calories and vitamins without the volume.

Friday, March 26, 2010

Appointment Update

These last two weeks Dylan has been to the Pediatrician, the Cardiologist and the Opthomologist.  Here are the results:

Pediatrician:  14lbs 10oz, 26 1/4" long.  12 month immunizations.  She was very pleased with how he is doing developmentally.  She once again told me that Dylan has exceeded her expectations. :)  I asked her if I should be concerned about his weight and told her that he is taking solids 3x's/day with 2 bottles.  He has been kind of rejecting the formula(it has been a struggle just to get him to take the 2 bottles) - she said it was because his taste buds have changed now that he is eating solids and that formula is kind of nasty.  I had also tried Pediasure to see how he would take that - no such luck(when he doesn't like something he will hold it in his mouth, smile and then spit it out).  Then this morning I figured I would just try regular whole milk - HE LOVED IT!  He gulped down 6oz.  At this point I just want to make sure he is getting all of his vitamins and nutrients and if he is eating fruits, vegetables, meats and milk that sounds pretty good to me and I am going to stop worrying about it.  She felt that he is thriving and we know that he is going to be tiny and grow slowly so as long as he isn't loosing weight we should all just relax a little bit.  I thought that was good advice.  Also, Dylan is finally getting his two bottom teeth, I can see just a little bit of white popping out of his gums!

Cardiologist: Dylan had an EKG and chest x-ray - results were normal.  The doc said that the ASD has almost completely closed and everything looks and sounds great.  Doesn't want to see him back for 1 year for an echocardiogram.  Great news because he now won't need heart surgery to close up the whole.

Opthomologist:  Dylan's vision is NORMAL- WHOO HOO!!! In the beginning we weren't sure about his vision.  It was questionable to the doctors if he could even see at all.  Now he is looking all around, tracking objects, people, etc...  He will look toward you when you call his name and my favorite - when I make funny faces for him he looks at me and laughs. 
Dylan has also had clogged tear ducts since birth and finally they are going to fix this problem.  My poor baby, he constantly has goopy, runny eyes, and every morning when he wakes up his eye lids are crusted together.  I am constantly wiping and putting ointment and drops in his eyes - he hates it.  He has gotten very smart about it - when I put the ointment in he immediately wipes it away with his hand.  So the doctor and I agreed that this problem is not going to clear up on its own and he needs to have a procedure done to open the tear duct.  He will have to be sedated but it is pretty quick - they go in and insert a teeny tiny rod down into his tear duct to open it up and PRESTO - all better!  They will be calling me next week to set it up - it will most likely be in the next few weeks, early April.  I can't wait.

Dylan says "don't worry Mom, I can hold on tight."

Hailey sure loves her brother.

Dylan looks like such a big boy in this picture.

Sunday, March 21, 2010

Just some pictures for today

Dylan can sit by himself pretty good on a soft surface like the couch - he was proud of himself.

It's never too early to learn how to drive.
Look at their curls! - Didn't get it from me.

We are working on weight bearing - Dylan doesn't like to keep his legs straight so I have to put these splints on.  He can do pretty good with them, the important thing is that he is learning how it feels to stand up, and he likes to play with Hailey on the activity table.

A little walking practice.
He is so close with the crawling position, I only have to give him some light support under his arms.
Keep up the good work buddy!

Dana (Dylan's therapist) and I were very excited in this video because Dylan was feeling, reaching and looking for the toys -this may not seem like a lot to some people but for us it's GREAT.  He really liked the light tray, it seemed to keep his attention. - Thanks for bringing it Dana!

Monday, March 15, 2010


I have found myself recently reflecting back on this last year - the ups, downs, joys and sorrows.  So much has happened since the beginning of 2009 - the list is long.  It almost seems like I have dealt with more in 2009 than in the rest of my whole adult life combined.   I found myself on the verge of a breakdown more than once.   I have shed more tears than I ever thought possible.  Even through all of these sad and hard times I have seen my marriage grow stronger and stronger.  I have an amazing husband and couldn't do it without him.  He helped me move past worrying about all the "what ifs" and just live our life.  I have witnessed my true friends stand by my side or even lay by my side when I have been crying in bed and help pull me through(you guys know who you are).  My friends and family drove hours to come down to our house to make dinner, clean the house or just play with Hailey.  I have had more acquaintances and friends of friends call me just to see how I was or send me a card to show they are thinking of us.  I can't believe all the love and support we have.  I have been informed that we are on prayer lists all over the country, even in England!  I even received a beautiful hand made Prayer Blanket for Dylan from a co-worker's church.  People who I don't even know are so touched by Dylan and his story that they follow this blog and send me an e-mail or comment now and then just to let me know they are there.  It is utterly amazing. 

Soon after we got the diagnosis I received phone calls from two moms of children with special needs (one has a 6y/o with WHS) who were friends of friends of friends and they listened to me when I felt that no one else could possibly understand.  I cried to these total strangers(and wonderful women) on the phone for over an hour and they didn't mind.  They understood, they had gone through everything that I was going through and shared their stories with me.  I finally felt like I wasn't alone.  Now I know I am not alone thanks to the blog world.  I have met so many wonderful families with children with WHS.  It has helped me tremendously to read their comments and words of encouragement.  I want to send out a big THANK YOU to all my fellow bloggers - you are all amazing people!

After Dylan was born I started a journal and today I was reading over what I had written one year ago.  I had a lot of feelings of shock, anger and sadness.  I found it very hard to find happiness in my days.  I honestly just wanted to run away from it all, I couldn't handle it.  I could barely look at him without crying. I could barely drive to a doctor's appointment without crying.   Now I can't look at him without smiling.  I am not saying that I don't have hard days, I do, but I definately have happier ones than a year ago.  Dylan is so greatly loved by our family, friends and everyone who meets him.  I have had more people ask me how he is doing than I could even count.  Without saying a word he melts your heart and will change your life.  I appreciate life more because of him and I think a lot of other people do too.

Saturday, March 13, 2010

Kelsey and the Kiddos

I moved Kelsey to a new boarding stable yesterday and it is absolutely beautiful.  I am a little jealous - I wish I could live there.  So while Kelsey was busy running around the arena I attempted to take some cute pictures of the kids.

The barn - Kelsey's stall is the first one on the left.

Every horse's dream - lots of green grass.

Monday, March 8, 2010

Hailey feeding Dylan - too cute not to post.  She is such a little mommy and loves her brother so much. 

Dylan was quite a mess but still happy as can be.

Thursday, March 4, 2010


A lot has been going on in the last month and there is a lot to come in the next two months.  I am going to be very busy to say the least.

I took Dylan to the Neurologist today because for the last 2 weeks he has been having these little eye flutters/tremors throughout the day.  They only last a few seconds but have made me concerned that they may be seizure related.  Luckly Dylan happened to have 3 of these little episodes during the appointment so the doctor could see what I was talking about.  This doctor hasn't seen Dylan since he was a infant but he remembered us very well and it was great to go to an appointment and not have to educate the doctor on WHS.  He performed a very thorough exam and he is not sure if they are seizures or not.  He thinks they maybe are just benign tremors but is scheduling an EEG just to make sure.  (Dylan had an EEG - which was normal - when he was about 2 months old because he was having a lot of eye rolling/body flinching.)  He just wants me to let him know if they increase in severity and/or duration and does not want to put him on medication at this time.  He was pleased to see how well he is progressing.  I guess it was a good appointment but I am still very worried about him.  I pray that he does not have seizures.  On a good note he weighed in at 14lbs 2oz! 

The rest of March and April are kind of crazy for me.  On top of 3 days/week of PT/OT, he will be going to see Cardiology, Opthomology, the Pediatrician for his 1 yr check up, have an EEG, and spinal surgery (scheduled for April 21st - which Mitch and I have to go down to San Diego a few days before and donate blood just in case he needs it).  Also thrown into the mix - I still have to work part-time, am in the process of finding a new boarding stable for my horse (which is a whole other story and adds a lot of extra stress for me), take Hailey to 3 birthday parties and plan her 4th B-Day, try to keep my house clean and all the laundry done, and hopefully get a hair appointment in somewhere.  I am a tad bit overwhelmed at this point in my life, but what can I do except take it day by day.  I know that March and April will fly by and then everything will be better (hopefully). 

To end this post: a video of Dylan after his bath tonight and some pictures of a happy little pickle.

Monday, March 1, 2010

Rolling Over

So tonight as I was getting the kids ready for a bath Dylan was very excited(kicking and talkin') and finally showed us on video that he can roll over!!!  Now I have proof to show the therapists.  He has rolled over before but it has been quite a while.  I am not sure if it is because he has grown and now it's been harder for him or because he is just stubborn (you really can't make him do anything, he just does things when he wants to).  Before I got the camera he rolled over 3 times, he was so proud of himself, it was adorable.