Emma and Daddy chillin' on Easter

The Cool Cats

This is one of those pictures that she will hate me for in about 15ish years

I told Emma to say "cheese"

Grandma Rose

Today we are celebrating the life of Phil's Grandmother, and she will be put to rest tomorrow.  

I had the privilege of knowing Grandma Rose for seven years.  She is an amazing woman, and will be missed by many.  Grandma and Grandpa would have celebrated their 64th year of marriage next month.  I loved hearing the story of how they met, and I have never seen two people more in love than they were.  My condolences go out to the entire family as they go through this difficult time.  

 

Rose Scimeca Rose Scimeca (nee Martorano), 84, was the beloved wife of Philip; devoted mother of Joe (Kathy) and Anthony (Karen) Scimeca and Annette Fecarotta; loving grandmother of Philip, Joey, Kimberly, Nicole, Katie, Anthony, Bobby, Gina and Dominic; loving great-grandmother of David, Dean, Joey, Macie, Emma, Olivia, Sophia, Giovanni, Joey and Gabriella; dear sister of Kay Martino and Mary Tomczyk; fond aunt of many nieces and nephews; and cherished friend of many. Service will be on Tuesday, April 26, beginning at 9:30 a.m. at Cumberland Chapels, 8300 W. Lawrence Ave., Norridge, proceeding to St. Rosalie Church, Harwood Heights, for a 10:30 a.m. Mass. Interment will be in St. Joseph Cemetery. Visitation will be on Monday, from 3 to 9 p.m. at the funeral home. In lieu of flowers, donations may be made to the Alzheimer's Association at www.alz.org or mailed to 225 N. Michigan Ave., Floor 17, Chicago, IL 60601. For information, 708-456-8300 or www.cumberlandchapels.com.

Published in Chicago Suburban Daily Herald on April 24, 2011

This is so sweet

I took this picture a few weeks ago when Emma was napping at Grandma and Papa's house. When I went in to check on her she was using my old "Pickens" as a pillow. My Great Grandma made them. I just thought it was so sweet!

Oh......The Face

I went in to peek on her to see if she finally fell asleep.
Who needs a bed, when you can use the dresser drawer you broke. Resourceful little girl.

Randomness (is that a word?)

Emma is getting better. At least her rash is better. She is still running a low grade fever, and she's still pooping out her ears, but she seems better.

I'm thinking about getting both the girls a haircut (gasp....). Macie just has so much hair, and with summer coming it would be easier all around if it were shorter. Emma just needs some really odd and random long ones cut that hang in her face. She looks like Donald Trump with her comb over. We'll see!

I can not for the life of me make decent sweet potato fries. They taste ok, but just don't get crisp like I would like. I want to bake them....no deep frying. Any suggestions? I need things like that to trick Emma into eating vegetables because she won't touch them.

Weight Watchers.......ummm....I kinda fell off the wagon for a bit with all the recent things going on around here. I have lost a total of 5.9lbs though, and I am ok with that considering I haven't been good about tracking everything. I am back to tracking everything so hopefully I will have some better updates on that soon. I'm thinking about taking on another "adventure" soon, but don't want to talk about it until I really decide to do it or not. Are you curious? It's nothing crazy, trust me!!!! Mom- I promised you I would not jump out of any more airplanes and I meant it (two times was enough).

Macie is still a ham with the camera. I hope it keeps up because I am getting some super cute pictures lately.

Think that's all for now. Going to take the girls for another walk. We have to enjoy this weather before it snows again!

Designated Driver

I told Emma she should not be driving in her condition so her big sis took over.
I know......bad Mommy for having Emma outside, but the beautiful weather has to do her some good. She seems to be doing better. I might be eating those words I just typed......stay tuned.

The non-splotchy one

She's just too cute for words, and such a ham lately. The minute I bust out the camera she does a cheesy smile and poses for the camera.

Back to the drawing board

Emma enjoying her oatmeal bath. Poor thing. Really seemed to soothe her!



We had to take Emma back to the Dr. today. Her rash got worse and her feet and hands were turning blue/purple. Her fever came back, and the poops are still hanging around!
Now they're not sure what it is, but are suspecting a rash caused by a virus.
They told us to give her children's Zyrtec, and that didn't do squat. She had a banana, and some saltines for dinner and it came right back out the south end in the worst way we've seen yet.
While at the Dr.'s office we discovered that Emma lost almost a pound since yesterday. Not good for a one year old! They were going to admit her to the hospital, but she was producing tears and her mouth was wet so dehydration hasn't set in yet. I am shocked that it hasn't. We are supposed to give her a few ounces of pedialyte at a time and cross our fingers that she keeps it in her body.
We have an appt. tomorrow morning to weigh her again. If she lost any more weight, or hasn't gained any back, she's probably going to be admitted to get fluids and run some tests. Keep your fingers crossed!

Fifth Disease

This is supposedly what our little Emma has. Makes sense to me because the number 5 correlates with the number of explosive poops she has in an hour, it's the number of holes that her poop is coming out, and almost reaching a temperature of 105.
Our journey with this started on Sunday. It was going to be a beautiful day, and we were going to go to the zoo. When I went to get Emma up I knew the minute I saw her that she had a fever. I picked her up and she was burning hot! 104 was her temp. CRAP. I called the Dr., and they got her in that morning. Diagnosed with just a virus. She was checked for strep, checked for ear infections, etc. I brought her home and we just hung out all day. Daddy and Macie did some work in the yard. The explosive poops started, her temp. was still pretty high, and now she wouldn't eat or drink. Around 5:00 she was pretty bad so I called the on call Dr., and she told us to take her to the ER. Took her there, they did nothing for her. She slept pretty good, and finally started fussing around 7:30 the next morning. I went in to get her and she was covered in red splotches. Oh yeah, forgot to mention that I showed the ER doc a few little red dots by her armpits, and one on her back. He said "keep an eye on them".
I got her out of her crib and stripped her down. They were everywhere- her face, her arms, legs, back. Her temp was down, but I was still concerned. I called the Dr. again and they got her in for another appointment. When she saw her she said she needs to go back to the ER. They have one right next door to the office. So......took her next door to the ER. Long story short- they did nothing. They gave her benadryl to see if it was an allergic reaction to something, and gave her some tylenol. They observed her for about 3 hours, and sent us on our way with the "Fifth Disease" diagnosis. After reading up on it a bit, it makes sense.
It's very frustrating since it is a virus. We just have to give her Tylenol and Motrin for the pain and fever, and let this beast run it's course. She's barely eating, or drinking. When she does either it just goes right through her in a matter of minutes. The foulness that is coming from our adorable one year old is indescribable. We have been scrubbing and sanitizing our house constantly. This may be a job for Hazmat!
Poor thing!

Be still my heart

Love the tongue hanging out!

I took Macie outside yesterday while Emma was napping. She was at the top of her slide, and just happy as can be. I turned to her and said "I love you Face", and she planted a HUGE kiss right on my lips! It was so very sweet!!!
Despite being a little under the weather yesterday, it was a good day for her. She was very vocal, connected, and very loving. Wish I knew what triggers her to have these "good days". There are much more of them than there were 8-10 months ago, but I would like them every single day please!
Would you believe that we already have an appointment with the Preschool Macie will be going to? We have a transition appointment on April 28th. We will meet with her teacher, the assistants, and the principal. I'm excited, but a smidge sad that my baby is growing up so fast and going to be going to school in 5 months!!!!! I think it will be a great thing for her!
We are also looking for a daycare to take Emma to two or three times a week (I may have already mentioned this). She needs some time with other kids.

Cuties

These precious little faces just make me total mush!!!!

Some Randoms

These are the BEAUTIFUL flowers that Gayle, Mark, Katie and Ryan got us! This picture was just taken, a week and 1/2 since they gave them to us. They are still looking good, and very fragrant.


Macie winding down with a little drawing before bed.



Emma is exhausted after taking care of her baby all day!

Question 3

What exactly happened at Illinois Masonic?


We were led into a small room and introduced to a Psychologist, Occupational Therapist, Speech Therapist, and Developmental Therapist. There was a Developmental and Behavioral Pediatrician behind a mirror.
The Psychologist asked us 324756 questions while the others "played" with, and observed Macie. It was overwhelming for us so we can't imagine what Macie was feeling. Two of them were up in her face trying to get her to do things, and one of them was lifting Macie off the ground by her armpits and slamming her feet on the ground. I pretty much wanted to beat all their asses, scoop up Macie, and run out the door. Instead, I kept telling myself that this is what they do.....they know what they're doing. At one point the DT asked us if Macie pointed out body parts like her "nose". We answered no, and looked over at Macie who was pointing out her nose. She also put puzzles together which she will rarely do for us.
Anyway....they spent about 45 minutes with her, and then left the room. They met for about 20ish minutes and came back to talk to us. During the time they were gone a man came in the room. He didn't introduce himself, and he was carrying wooden train tracks and a Thomas the Train. He sat down at the little table across from myself and Macie. He turned to us and said "so....you came all the way from Bourbonais!" Um....NO, and who the heck are you? As he's talking, he's spitting all over me. Phil mentioned that the look on my face was priceless....I can only imagine! I'll be honest, at first I thought he was an Autistic adult that just happened to wander into the room we were in. We finally figured out that he was the Pediatrician behind the mirror/glass. He was a very nice man, and I am sure he is very intelligent, but his approach really sucks. He chased us down the street when we left to give us some information on Autism, and some local programs, etc. He was very helpful....eventually.
Based on their observations, she falls on the spectrum.

Here are some of their "findings":
Development: Non-verbal cognitive is estimated at an 18-19 month level
Expressive and receptive language are at 9-12 months
Gross motor development at 20 months
Fine motor at 22 months

Descriptive summary:
I won't type the whole thing, it's long.
"Macie is an adorable girl who presents with a difficult temperament with negativity often predominating. She presented today with patterns of communicating and behaving that are consistent with a diagnosis of Autism. Macie demonstrates delayed and atypical communication."
That is just the first few sentences. It still hurts to read it. I take it personally. Words like "difficult temperament, negativity, easily frustrated, avoidant, etc.", they really hurt my heart.
How can a parent not take those words personally to an extent.

We will be getting a more detailed summary some time soon.

Yo, Adrian! It's me, Rocky!

Question 2

How are you and Phil doing/feeling?

The answer to this could turn into a really long post. I will try my best to summarize.

We are doing ok.
I think we are having difficulty sorting out our feelings. Some of the emotions that are surfacing are confusing. The first emotion for both of us was sadness. We feel selfish for feeling sad. Sadness is often felt when something, or someone is "lost". We almost feel like we are in mourning. We didn't "lose" Macie. She is still "The Face", but we most certainly are mourning the loss of hope that she would not get this diagnosis. We are mourning the loss of a "normal" life for Macie. I say "normal" because there is no cure for Autism, no one knows how and why it happens, and this is something Macie will struggle with her entire life. I feel like we have been taken out to the middle of the jungle and dropped off with no map, no compass, no food, and no water. We were given this diagnosis, but were left with so many unanswered questions. We were left to kind of figure it out on our own. Where is she on the spectrum? Will she ever talk in sentences? Will she ever read or write? Will she ever make friends, go to college, get married. Will we ever hear her say "I love you", and know the meaning behind it. We have no idea, and it's scary and heartbreaking. (I do have hope though- please ready Kim's comment under "Question 1 post")
Maybe it sounds harsh to some that I say we are in "mourning", but I want to be honest and candid along this journey. If I am honest and candid, I just may be able to help someone else, and in the process help us.
We are also angry. Why us? What did we do wrong? We are her Mommy and Daddy, and we couldn't protect her from this. It's our job as parents to protect our kids, and we feel we failed at that. There is no concrete answer to the diagnosis so why wouldn't we blame ourselves?
Every day gets better, and every day we have different feelings.
We'll get through this. We have to. We want to.

Emma

Emma is walking about 80% of the time. She tries to run instead of walking, she falls and then just crawls the rest of the way. She definitely is attempting to walk most everywhere. She looks too little to walk, but I am definitely excited about it. She will be able to run around the yard when the weather cooperates more!

She is chatty! She now says "all done, dog dog, ki ki, ba ba, Mama, Dada, Hi Dada, uh oh, baby, more, go go". Her mouth never stops moving unless she has a bottle, or is sleeping. Loving it!

She is learning how to use a fork and spoon, and she's mastered the sippy cups, but still prefers her Silk in a bottle. She's still using a "bink bink", but mostly just for naps and night time.

She feeds her baby doll when I tell her she's hungry. She shares all the time. She offers me her sippy cup, her binky, her food, etc. She is ALWAYS feeding Otis!

She's really warping into a toddler FAST!

First Question

Where is Macie on the spectrum?

We don't know. We asked the same question, but didn't get an answer. After another evaluation in approximately a year they MIGHT be able to answer that for us.

"Autism affects the way your child perceives the world and makes communication and social interaction difficult. He may also have repetitive behaviors or intense interest. Symptoms, and their severity, and different for each of the affected areas (communication, social interaction and repetitive behaviors). Your child may not have the same symptoms and may seem very different from another child with the same diagnosis. It is sometimes said, that if you know one person with Autism; you know one person with autism."
"The symptoms of Autism typically last throughout a person's lifetime. A mildly affected person might seem merely quirky and lead a typical life. A severely affected person might be unable to speak or care for himself. Early intervention can make extraordinary differences in your child's development. How your child is functioning now may be very different from how he or she will function later on in life."

Information taken from Autism Speaks, First 100 Days Kit.
I have added the link to the kit below. It has a ton of great info. for anyone who would like to know more.

http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf

March 21st, 2011

is the day that Macie was diagnosed with Autism. My daughter is Autistic. It stings to type that. It's a step in the right direction though. I am still not able to say the words. It's not that I am denying it, or that I don't believe it.....it's just hard to form the words and say out loud.

I have so much more to talk about, and I will. I just need some time to process this. I will blog more about her diagnosis, and the process when I can organize my thoughts a bit better. I want to talk about it, and I know a lot of you have questions. We very much appreciate everyone reaching out to us yesterday. It's so hard to talk about right now without crying, and I hope that you all know that we just need some time to process this as a family.

This little purple folder has changed our lives forever.

I know that Macie is still Macie. I know that we still love her the same, maybe even more if that's possible, but our lives feel like they've been turned upside down. I know things "could be worse", but in our eyes, at this moment, they can't be worse. I'm guessing that feeling this way is part of the "grieving" process.