The Story of Dinosaur

 This is Dinosaur......He is scheduled for Surgery at 9am tomorrow.  Apparently all the little plastic beads I keep finding around my house are from his tail.  Today he showed me how smart and emotional my son really is. 

In October of 2011, Frankie had to have an MRI which was scheduled by his neurologist.  I'm a tough cookie, Ive pinned my kid down for blood tests, I've held his jaw open to get a strep test, I have even wrapped my legs around him like a snake to let them stick things up his nose.....all the while with a nervous laugh.  I'm not actually laughing, its more of a OMG is this really happening, is this child this strong and combative....I have nothing left but to giggle.  With that being said, when the Social worker warned me about them putting him under, I though pshhh, no big deal.  So the time came to bring my little boy into the room with the Donut.  Again, social worker warns me about how he will go out and its upsetting sometimes, yeah yeah shh whatever.  Me and 4 other people are now holding my son down on a table, a doctor puts the mask on him and unlike anything I have ever seen prior....my sons little body goes limp.  It doesn't look like falling asleep, it looks like dying and then I  started crying.  I was escorted out of the room and told to go walk around for 45 minutes.

I walk around all nervous in this big Fancy Hospital.  Grab a Starbucks and play on my phone.  At this point in our journey Frankie was still not very verbal.  The words were there, but they weren't really used together.  I don't really know what he likes other then Thomas.....so I stumble around the gift shop looking for Thomas or something.  Instead I find a blue t-Rex...that in reality, I wanted.  My son awakes from anethtisia very upset and meets his new pal "dinosaur".

Frankie holds onto dinosaur the whole way home as he babbles about the BIG"O" ......when asked..."dinosaur is from the doctor".....that's the beginning of a friendship. 

About 3 hours ago my son is laying in my bed trying to sleep, he asks for Kangaroo (his other animal).  So I ask him "Frankie, where is Dinosaur?"  All glassy eyed he says to me "mommy I don't love dinosaur anymore.  His tail is broken, his stuff is coming out.  He flew out the window and went away.  I don't love dinosaur and he don't love me"  WHHHAAATTT?

I know better....I'm not sure what he is talking about but, I know he doesn't suddenly NOT love that stuffed animal.  So here I go searching the apartment, the car behind his bed.....and find dinosaur stuffed in a drawer.

I find my son still awake, looking on the verge of tears, still saying he can't love dinosaur anymore.  I show him who I found...he lights up and then is upset again.  He tells me his tail is broken.  Since I'm a crappy sewer I bandaged him up and will have my husband (yes my husband) sew him closed tomorrow. 

I talked to my son, who for some reason or another believed that if dinosaur was broken I would throw him out.  He though he couldn't love him anymore....so he hid him in a drawer and lied to me.  About 2 minutes later he passed out.  He is just too sweet, he made me cry, he is just too sweet.

Our trip to the MRI

 Monday we had our MRI.  The boys appointment was at 9:15am about 45 minutes away from our house.  If you don't know, I am not much of a morning person.  So up I woke and dragged my little, starving child out of the house and out to Stony Brook University Hospital.  They were really great with getting us settled, and getting Frankie comfortable.  We first met Caitlin, who was the child counselor person, she answered questions and played With the Ipad with us.  Caitlin also gave Frankie a practice mask so he could try to put it on before the MRI to get use to it....i told him it was for Firemen, he was thrilled.  Honestly, he could not have done better.  He waled into the MRI room itself and told me he saw a BIG "O" (the MRI machine).  He even sat on the table near the "O" without crying.  It wasn't until we made him lay down that he started to get upset, and then the mask to sedate him....oh man.  When your child has a mask on you can not hear them scream.....but you can see them scream, you see them scream through the clear plastic and you see it in their eyes.  I didn't realize how sad it was to watch that.....and as quick as it starts, your child's screaming fades away as they go limp.....its not a pretty thing.  

I went for a walk for 45 minutes, got a coffee, got him a stuffed dinosaur.....he has been really into those lately.  When I got into the recovery, there lay my little boy, so peaceful and so cute. 

They did his vitals while he slept and after about 20 minutes I decided I should wake the kid up.  In reality, if I had left him he could have slept for hours.  He woke up and tried to pull the IV out as well as the Pulse-Ox taped to his finger.   The nurse took out the IV and then Avery (our nurse) asked Frankie what kind of Band aid he wanted....Toy Story or Penguins....to which my son says in a slurred voice "Pandas".  Sooooo we gave him Penguins, since they are also Black and white haha.  Eventually he stopped whining and ate some cookies and juice and once he was all checked out, it was time to go home!

He looks thrilled doesn't he?  Well, Avery wheeled us out, and Frankie loved the ride.  When it was time to walk to the car she was hopping so I knew he meds had defiantly worn off.  I have to say the most exciting thing was later that night I asked him to lay down so I could change his diaper and he says "Mama I laid down and take a nap int he O"....I burst out laughing, yea he did take a nap in an "O"  I tried to get him to elaborate but he really only talks on his terms.  He told my mother that they "put a mask on the nose and go in the O, with a mask on the nose, the doctor on the nose".  His language is so funny, I love it!  So the whole experience was not as horrible as I had expected......lets hope the EEG goes as well on Friday!

The Neurologist Take 1

So I have finally gotten around to describing our trip to the Neurologist.  We chose a doctor about 45 minutes from our house by Stony Brook University Hospital, Dr. Gail Schuman.  If anyone on the island needs a pediatric Neurologist, she was great, so down to earth and understanding. 

When we got there I had some issues with referrals....apparently I needed one, as you guessed I didn't have one!  At least we got a faxed over referral from our pediatrician but that was a little stressful to say the least.  We had a pretty short wait and were brought back to the room to meet Dr. Gail.  Mostly she questioned us and watched him play.  He does have a diagnosis but I wanted a medical one also.  She said he had some great skills but wrote up that she also thought he needed ABA.  It seems the school district has decided by watching my son for a whole 30 minutes that they can decide that he does not need any behavioral therapy.  Hopefully Dr recommendation over takes the school districts decision, I will find out on the 16th :/.  So they checked LP's reflex's (great!) and some other little things.

We then got all of the recommended things we have to do.  I have to bring him back for an EEG on Aug 26th, have his blood worked up to check for chromosome issues and lastly get an MRI.  I am very anxious about all of these things but i know they should be done.  Even Dr. Gail asked me why they never did blood work ups on him at the pediatricians to which I had no response.  What got me thinking even more to the lack of knowledge on the pediatricians part is that they KNEW my son had soft markers for chromosomal abnormalities when i was pregnant.  This bothered the Neurologist.....

At my second trimester scan my son has calcium deposits in his heart and a cyst in his brain.....things they told me were soft markers for chromosomal abnormalities.  I refused an Amnio since my AFI work came back that i only had a 1 in 14,000 chance of having a child with issues.  He was born "fine" and no one ever looked into anything.  They said he was fine and those things probably disappeared.  So this is a main reason the Neurologist wanted the blood work up and to get a baseline MRI to see what it was like in there since we have no idea when and if that cyst went away.  So that's our first trip....with more to come.  Wish us luck on this journey!