A dose of reality

I can usually go about my day and not give Dylan's diagnosis a second thought because I think of us as a "normal" family, but Thursday night I got a little reality check.  When I went to check on him before I went to bed I found that he had vomited and as I picked him up he felt very hot and it seemed like he was having a seizure.  His eyes were rolling back, he was grinding his teeth very hard and his whole body seemed to be in a contracted state.  We tried to get his attention by calling his name and patting his back but he couldn't focus.  We decided to go into the ER, luckily the hospital is just a few short miles away and I ran in holding him close and cut in front of a lot of people in line and said " I am so sorry but my son is having a seizure!" (to my surprise as I said this the tears started to flow).   Everyone moved nicely aside and they took us back.  Once I laid him down he seemed to be coming around and was grabbing at the nurse's stethoscope.  His temp in the ER was 101.8.  They gave him Tylenol and Motrin and checked his blood and urine and did a chest x-ray - everything came back OK and the doc thought he just had a virus that caused the febrile seizure.  We were in the ER until about 3am and then they let us go home. 

This scared me to death and to be honest it made me think, "is this going to be the horrible seizure that takes him from us?"  It reminded me how fragile Dylan really is and it made me sad.  I was once again asking, "why did this happen?"  "Why did our child get diagnosed with this rare syndrome?"  ARGHHHH! It isn't fair!   If Hailey or Luke had a fever of 101.8 they wouldn't have a seizure.  I could go on and on, blah blah blah... but then it made me think all weekend about how fortunate we are that Dylan is fine and has only had two febrile seizures in his life.  I spoke with his Neurologist today and his latest EEG was normal.  I know that seizures could always be a possibility but I am thankful today that he is not on any medication and besides having a rough couple of days following the seizure and his body fighting off the virus he is completely back to the same old happy Dylan. 



  

Yoga with Dylan

On Sunday my sister and I took the kids down to the beach in Malibu.  It was overcast, but warm and fun.  The kids had a blast and Dylan had quite the little yoga routine going on, we were cracking up watching him.  It went something like this...

First, you start out on the towel, but only for a second, while you do a quick meditation.  Make sure you grab a foot for this calming exercise.Then, you roll well away from the towel, making sure you perform a "swim like" maneuver with your arms while working your fingers in the sand... DON'T FORGET TO SMILE!

Lastly, for the ultimate stretch, you alternate foot grabbing - right foot, left foot, right foot, left foot and so on until you get tired and then kick both legs out simultaneously.  This exercise is best when done in wet sand.  Don't worry about getting all dirty - that's the best part!  These yoga poses can be repeated throughout the day for maximum happiness. :)

Hailey and Lukey had fun too.  This was Luke's first time to the beach since he has been walking and it was a little hard but that didn't stop him from making his way to the water with sister.

 After all sister is soooo much fun!

 My attempt to get a picture with the littles...  this was the best we could get.

 Dylan loves to fly

 Photo courtesy of Hailey

Dylan the model

Today was a very special day for me.  I was asked by a photographer if she could use Dylan for a photo shoot for her web site.  She heard about Dylan's story and saw his pictures and couldn't wait to use him as a little model, and because Luke is sooooo cute as well he too showed off his modeling skills.  Watching my babies smile for the camera made my heart warm and filled with love.  I was brought to tears (good ones) a few times and couldn't believe how beautiful my boys were.  It made me so very happy to see Dylan so photogenic and smiling ear to ear in almost every shot.  I am always so touched by how Dylan affects people.  Everyone immediately loves him so much.  It is truly amazing to witness and it sure makes me one proud mama.  Thank you Sharon for thinking of my boys and thank you Lila for taking the most amazing pictures.  I am so anxious to see the proofs. :)

Here are just a few pics I took last weekend.  I thought they were just too cute not to share.

She loves him so unconditionally.  Hailey is the best big sister Dylan could have asked for.

A Day At The Zoo With The Littles

The past few weeks have been crazy busy for me.  I have been picking up a lot of extra shifts at work, and with labor and delivery it is always CRAZY!  I almost always leave work with an aching head and aching feet.  Not to mention that I have had a lot of extra appointments for Dylan and back to dealing with his IEP has me really stressed out.  I have changed my mind on where I want him to attend school and am now in the stages of informal due process to see if we can get his placement changed to a preschool that has a mixture of "typical" kids and special needs.  I went and toured this school for the second time last week and fell in love with it.  I think that they will be able to meet all his needs and I am really excited that they integrate the typical kids into the classroom.  Dylan would get a "typical" buddy during certain activities which I think would be wonderful for him.  Now I am just hoping that we can get him in to this school being that it is a non-public agency it can be challenging to get an open spot but, I know that if it is meant to be it will be.  

Yesterday, I decided to get my mind off my stress so the littles and I hit the zoo.  First off I have to mention that I think the L.A. Zoo is ALL UPHILL!  Is that even possible?  It must be, because my legs are still burning from pushing all three kids in the stroller all afternoon, and no I do not have a triple stroller but a double jogger and Hailey sits on the front where the boys feet go.  I added it up, I am only pushing around 130lbs, so you can say I got a good workout in. :)

 I was stopped by some random dude telling me how cool he thought my chucks were - right!  I think so too, converse are way cooler than heals any day.

Good times.

Pictures

Dylan the walking wonder! - with a little help from mommy.

The past two weeks have been really stressful for me.  I have been feeling very overwhelmed with everything.  One of the main things that has me stressing is that I have been so angry with myself over Dylan's IEP.  I thought that everything had gone great and that he was approved for PT, OT and Speech therapy because I sat there listening to all of the goals that each therapist proposed for him for school and agreed to those goals.  I stupidly thought that that meant that he was going to receive those services at school.  Well I guess I was wrong.  I did not sign the IEP that day, instead told them that I was going to take it home and go over everything with Mitch and then sign it when we were ready to start him in preschool.  So two weeks ago I thought that I really needed to get on it and pulled out the papers and on the last page it stated that Dylan DOES NOT qualify for PT or speech therapy!  WHAT?!  How can this be?!!!  I called up the coordinator and asked if there had been a mistake, did they accidentally check off the wrong box?  She told me no, he was only approved for OT.  Can you picture my response?  Just use your imagination.  She then handed the phone over to the PT who had done his assessment and who proceeded to tell me that because he was going to a school that had the M.O.V.E. program and that it is a language based class that he would not need one on one therapy time.  Then she continued to tell me that because Dylan was assessed at a 6-9 month level, which I completely disagree with, that he wouldn't need help with walking because a 6 month old wouldn't be walking yet.  She also told me that "they weren't miracle workers."  WOW! I wish I had been recording that.  

Anyways, this is what I have to say - it's not over by a long shot, I am going to get my son the therapy he needs and deserves! And I guess I must be a miracle worker because check this out -





That's right - in your face school district PT!

3rd Birthday Party

Today we had a little celebration for Dylan's 3rd birthday.  It was perfect.  Short and sweet with just family and a few of his little friends.  Hailey told me that Dylan said he wanted a teddy bear party so that was just what he had.  The kids made Build-a-Bears, ate mac and cheese (Dyl's favorite), celebrated with homemade cupcakes and had a great time.  Dylan was all smiles all day.  It was the perfect party for our little man.  

This is what they started with: an empty teddy, stuffing, clothes, shoes and birthday accessories, and...

 ...this was the end result.  So very cute.

All the kiddos with their build-a-bears.

All in all it was a fantastic day.  Thanks to everyone for Dylan's birthday wishes.