AHA Walk Nashville

October 1st was the annual AHA Walk in Nashville. I was really excited to be part of the "Little Heart Heroes" this Year!

I have to admit that i was a little upset over Tommy not being there, but my hard working husband didn't have a choice but to open and stay in the store... he did try to be there so i guess i will have to forgive him this one time!

He promised me that he will mark the calendar for next year and be there!!!!!!!!! :)

I joked with him and told him that people always see me alone and they probably will start thinking that i am single again...lool !

I did had my close Friends come and support me which i am more then thankful for ..Noora, Nariman & Jano Thank you and Love you all!

I raised Thanks to my Generous Friend & Family more then was i set my Goal for...700$ in less then a week woohooo.... Our team raised all in all 1755$ which is great!

The walk it self wasn't so bad, i was scared i would have to carry Justin after a while... he did ask the question " Are we almost there yet?" about a MILLION time, which drove me CRAZYYYYYYYYYYYYY!!! lool He woke up on the wrong side of bed anyway that day. But we made it and the Weather was just perfect. Nadia also walked a little but got tired and slept half way threw it... After words we walked to the International Food Festival... i think we walked over 6 miles total and i was so glad Noorawas with me because the stroller with Nadia in it weight at least 40 Pounds it self and got really hard to push at times... when we got back to the car we were BEAT...!!!!

What a great day it was though... great Cause.. great people.. i am already excited for next Year!

Thank you for stopping by

Nadia is walking too :)

:)

We made it to the Finish line! YAY

Great Group of Friends

Sweet friend Catherine and our two Heroes

Someone is getting really tired

Nariman the Baby Whisperer

Miss Sweet face

:)

Justin doesn't understand the world anymore! lool

Pumpkin & Me

Justin's "not getting his way "face

Aunt Noora

Aunt Jano

Nadia

Don't know were to begin!!

I have been really busy with Doctors appointments, home, kids and just everyday life.

Nadia obviouly recovered well from her last visit at the Hospital and is as Happy and Healthy as she can be :)

We had her Audiology appointment a couple of weeks ago... guess what??

Nadia can hear perfectly fine... no damage, hearing loss whats so ever. You can't imagine how happy this made me! The Audiologist who was so sweet with Nadia ( she didn't shed a tear) told me that there is not even one little thing she is concerned about and wants to see Nadia after her Fontan again.

This weekend is the Heart walk in Nashville to raise awareness for CHD. I am so excited to be part of this Years " Little Heart Heroes" Group that i believe Catherine & Becca started.

( Correct me if i am wrong :))

Please help me reach my Goal of 500 Dollars in Honor of my sweet baby girl Nadia. Resarch has done so much already....have u heard about the "Berlin Heart" take a few minutes to ready about it http://news.vanderbilt.edu/2011/01/tennessees-first-berlin-heart-infant-receives-heart-transplant/ who knows what they can do in 10 - 20 years for children like Nadia or even Nadia herself . Every contribute counts !

http://nashvilleheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=454516&lis=0&kntae454516=4BEA03D0AE5D489AB2A06118E33D1D4D&supId=305743516

We also had a Cardiology appointment since my last Post.. which went really well.... Dr.Kavanaugh couldn't have been any happier with her! We discussed the Heart catheterization and she felt it's best we do it before flue season starts. Shortly after, we made an appointment!(Oct.6th) Umm ....ya, ever sense i have been an emotional mess!

It has been worse on me then the last cath.. what comforted me most last time, was that Nadia didn't understand what was going on.

At age 5 month she didn't know the difference between mom holding her or a nurse holding her.... I get really upset thinking about the fact, that know she will understand the difference and she might get upset... no she WILL get upset! Ugghh !

I am trying really hard distract myself by not talking or writing about it... i keep my self busy...i am trying to anyway!

Time flies by way to fast....doesn't it? Before i know it, the Fontan will be tomorrow. Oh Boy ... !

I am so ready for Nadia to be on the other side of this Journey....i can't wait to bring her home in her " I am a survivor " T shirt !!

Once again I am asking Family, Friends & Strangers to keep my little Girl in their Prayers!

Thank you for stopping by :))

My smart Big Boy Justin

Justin started Kindergarten at the end of August and has been doing very well so far!

I am one lucky momma because i have one bright little/big boy! Thank God.. His Teacher is really sweet and it is funny, because her and his PreK Teacher went to school with his uncle Hanna.The world is so small!

Kindergarten now is not what it used to be! I remember that i played allot, sang songs & drew Pictures....that was it... Justin is learning how to read and write already...the first week of school he had to learn a Nursery Rhyme and dress up for it. He choose to do " The Lion and the Unicorn" Rhyme.. he had fun helping me with his costume and it only took him an half and hour to remember it... I am so proud of him! He also lost his first tooth in this week which was so exciting.. well... i did help him a little getting it out... had the Camera ready to capture his reaction.. it was truly priceless. He insisted to stay up so he could ask the Tooth fairy some questions ..but ended up falling asleep...:) He found two whole Dollars under his Pillow in the morning and was so excited... he is saving up for a a Nintendo Dsi ;))

Justin is the Youngest in his Soccer Team and tries to keep up with them.. he does really well on his Practice but at the games he is usually put on defense and wouldn't move.. when i ask his why in Gods name he is just standing there like a big heavy tree he says " MOM! The Coach says DON'T move!!" Loool oh boy! He is doing the best he can and i am sure he will get better at it :))

I am just Glad he is having fun and he really likes his Team mates which is really Important to us~ :)

First day of his Soccer Practice

He woke up, finding two Dollars under his Pillow! Justin though he had hit the Lottery loool

OH MY!

Ms. Stacy & Justin on his first day of school :)

Ready Buddy ? That was his answer for me...Once he was in his classroom he didn't even look back.. he is growing up soo fast!

Hospital visit

Thursday, Nadia started to get fussy around dinner time and at night she developed a little fever, which was expected to happen 7 - 10 after she got her 12 month vaccine's from last week.
She also had a fever the first day she got the vaccine (102.4)
WRITING THE TEMPS DOWN FOR MY OWN RECORDS :)

I checked her temperature(101.6), gave her some Tylenol and put her back to bed. I noticed that she was breathing a little faster then usual and thought that it might be the way she was laying.. so i turned her around and her breathing sounded a little better.

I have to mention that her breathing isn't like other babies breathing, it always has sounded a little heavier and faster then others, but she was never breathing really fast.



Yesterday, Friday morning she was playful but still fussy, her fever went down to 99.6 but she still felt a little too warm.. her hands and feet were ice cold and her lips looked blue. Overall she just looked like she didn't feel good! It scared me because it reminded me of how she looked after her BT shunt hospitalization....


Nadia always has socks or house shoes on, she easily gets cold..but yesterday i couldn't get her warm, i took her outside and literally sat with her in the sun to get warm!

Around the afternoon i noticed the fast breathing again, i know i am not a nurse, but i learned to count her breath during our three hospital stays, which i believe normal for would be 35-40 breath a min? i think..???....anyway, i counted her breath and it was between 55-60 breath a min. Which is too fast!
I don't want to be one of those paranoid Mom's who call about every little thing.... because i was told fever is expected..... what i really was concerned about was her breathing!


So i was debating if i am just paranoid or if something is really going on!
Around 2pm i checked her fever and it went up to 100.1 i was talking to my sister in law at that time, who encouraged me to call to make sure since it's about to be the weekend.. better save then sorry!


I called the cardiology nurse first, who felt it would be best to see her pediatrician first, they wanted to see us right away.

Nadia, of course, not happy at all to be back at the office, screamed from the top of her lungs during vitals, getting catheterized for a urine sample & poked to test her blood count.
Everything came back normal but the doctor agreed with me that her breathing does sound to0 fast... she gave her some Tylenol and said that with the fever going down her breathing should get more comfortable... 20 min later it still sounded about the same.. she advised me to go to the ER if she will get any worse by tonight or to go tomorrow if it's not better at all!



Later at night, her fever went up to 102.2, i couldn't give her any Tylenol because she had her last dose at 3.30pm and it was only 6.30pm, her breathing got worse...so i decided to go to the ER.. We were seen within minutes after arriving.. her fever went up to 103.5.. Poor Baby Girl was miserable!


She got another dose of Tylenol and started to sweat all of her fever off...
Oxygen levels were in the low 80's and right before the nurse got the nasal cannula ready, her levels went up to the upper 80's -90's & luckily she didn't had to deal with that thing again.
Must have been the Tylenol kicking in!


Her heart rate looked great... they did a chest x-ray which came back looking like the one from February, that was good to know!
The ER Doc didn't think that the fast breathing had anything to do with her heart but more with the vaccines she gotten & the fever...i am glad he told us that we did the right thing bringing her in, they rather make sure it's nothing then it being something serious and not catch it in time..

If she wasn't a heart patient, i wouldn't sweat about a fever under 104.00 and just would do the home remedies i did over and over with Justin.
Because usually, fevers don't scare me, it's just ur body doing it's job fighting an infection.... it's just different having a Heart baby.. i heard and read enough horror story's to not take any chances with fevers or any signs of sickness!

They placed an IV, drew some blood to check for a viral or bacterial infection... the nurse was great and only had to poke her once... but it was still so hard to watch
It kind of brought back memories.... it has been almost a year since her last stay there... smelling the hand sanitizer made me think of the PICU ... :((



We were discharged right after midnight and were told, that the blood work would need 24 hours to come back and that they would call us if anything shows up.. we didn't get a call and hopefully we won't get one tonight or tomorrow!


Nadia still has some high fever, fussy and has been sleeping allot, but she hasn't been breathing fast or looking blueish sick!

Praying Praying Praying for a fever less, happy Nadia tomorrow! Because otherwise we would have to go back to the ER!

Keep us in Ur Prayers!

I need to Vent!

Saturday, a day after her 12 month check up ( the last post of Nadia is dated wrong) we had an appointment for her follow up hearing test.. she had one at Birth and at 6 month, which both i got the green light, with no concerns whats so ever.
She is suppose to have one every 6 month until she is 3 yeas old, but i scheduled her 12 month at 15 month along with her 12 month well check!

The audiologist, which i noticed at out last visit, isn't very friendly...made it clear to me that, that wasn't OK!!!!
I thought at our last visit, that she just had a off day, everyone does, but i guess that this is just the way she aways is...right when she came through the door..she gave me grief over why i didn't bring Nadia in for her 12 month hearing test..without even saying hello.. i mean ...wow really?? .... i am 3 month behind.. does those 3 month really make a difference? So, i felt like i needed to apologize and so i did... she kept this rude attitude the whole time i was there !





Anyway, she checked her ears with a little machine that looked like my Thermometer while Nadia was screaming from the top of her lungs! Between all the screaming and holding her down she said with a snappy, i told u so voice, something like " yup.. it can't get a ear drum movement"... when she was done.. she just shuck her head ...i asked her what this would mean and she said in the plain & simple words " well...that is a sign of hearing loss" .... i was in shock!





Hearing loss? Nadia? Nadia?!!?!?! Who can hear the keys turning when Tommy comes home? Who wakes up when i super slowly open the door? Nadia? Yea right... no way!



I didn't say anything or asked her anything further at that moment because i was just super shocked ! She sat us in this little box. I am sure all of y'all did that.. .. one speaker on ur right, one on ur left.. Nadia responded to all of the silly none sense she was saying through the speakers... through the glass window i saw her shaking her head again... by that time i was starting to get mad!


So we get out of the box and she tells me that Nadia has fluid in both of her ears and that i needed to get her treated for that....i told her that Nadia was just yesterday at the pediatrician and got a green light on both of her ears.. she just laughed and said " I am seeing fluid "... What does that mean for Nadia i asked her... again she just answered me, to go see her pediatrician for treatment....





I mean this is serious.. this lady has no clue what i have been threw since the fist day i found out about Nadia's heart!
I had to process so much information, information that made me break down in tears so many times, scared and worry so much...worry, alllll the time.
She can not just tell me that Nadia is loosing her hearing, without explaining it any further to me...!!!


I didn't give up there and asked many more questions....

Is it related to the ear infection she had just few weeks earlier???
How could she have fluid in her ears,even though her pediatrician just saw her???
What is the treatment going to be?
Is her hearing just going to get worse??

No clear answer .......i was officially frustrated and mad.....wouldn't u be ?


Then she said..."u know...her speech & language are great"..." well.. she might just be borderline" ...ahhhhh what???? Make ur mind up lady!! What is it now??? Completely confused!! I was so mad y'all!

I had enough of her unprofessional behavior, her facial expression and her head shaking attitude!


It was just unbelievable.... in the moment i didn't say or asked anything anymore.. i silently left the room and told the receptionist that i wouldn't be coming back when she wanted to schedule a follow up appointment.I left her Office with 1000 more questions then when i came in!



I blew of some steam by talking to Tommy and a couple of my friends!
On Monday i called her Paediatrician, that i completely trust with all my heart, he s truly a wonderful doctor!
He seemed to be confused about the fluid in her ears too, because he just saw her a day before but he said that fluid comes and go... i think he just said that to make her not look so stupid!
He didn't want to do any treatment and agreed that i might be a good idea to get a second opinion.. so that is what i did. I scheduled an appointment at Vanderbilt atthe end of September.

I am praying that this Doctor is completely wrong. I think Nadia has enough to deal with in life.... i am praying she won't have to battle hearing loss too!

I keep you updated

Nadia

I know i have not posted much on Nadia in the past couple of month. I don't know what was with me lately.. every time i started to write, my brain would just go blank! Well, glad i am have my Brain back!

I am happy to post that ever thing is going so well with her/us! She i just growing and moving right along! We had her 12 month check up at 15 month old today.. Because of all the surgery's we got 3 month behind on them.

Between May and middle of July, Nadia had not gained anything.. actually she had lost 5 ounces when we came in for a mild ear infection . Weight gain is a big issue with heart children .. but because Nadia's last Cardio check up went so well, i was sure that it had nothing to do with her heart.. (if the heart is sick or enlarged, it pumps harder, hard pumping heart = burning more calories= no weight gain) got it ?? :)

I did switch from Similac toddler go & grow, to whole milk that i mix with Carnation milk for the calorie intake she is suppose to get.. it did not work out so well for her, because Nadia would drink less ( don't blame her.. it's yuk! ) and i am guessing that it has allot to do, as for why Nadia did no gain anything, so i switched back to go & grow.. and oh look Nadia is drinking 6-8 ounces at a time again! I also started to feed her table food, healthy fatty foods, and i think that made a big difference.. she gained a whole Pound in 3 weeks .. see momma knows best! I always follow my instinct and i am so glad i do !

She got a few vaccine's today..of course she wasn't to happy about it! Besides that, the visit went pretty well! '

Nadia's new favorite word's are "yes".." daddy" ..."mom" & ..."Jiiiii" for Justin! Haa she jibber jabbers allot besides these few words.

She started to climb our stairs, couches & beds and knows how to get off the bed & couch but the stairs she didn't quit figure out yet :)

Give Nadia a couple sheets of paper and u got the girl busy for at least 30 min! Haa it's too cute! She also loves Micky mouse club house.. she sings and dances along!

Nadia is defiantly a girlie girl... yet, she is tough as 5 boys put together.... i can see kick some behind in the future.. don't mess with her y'all!

She loves her two dolls and she would fight u for them! :))

Her favorite foods are any Arabic dish, that include rice, veggies & meat... :) she can not get enough of tomato's, strawberry's & grapes....just keep them coming!

I think these are the newest news about Nadia.. :)

Thank you for stopping by

He turned 33 again

He stretched, he smiled and he said " wow i am 33 today" i laughed and said " must be nice to turn 33 AGAIN" he looked at me like i am crazy!

Hahaha poor Tommy really believed for a second he turned 33 again.. to make his 34th Birthday a little easier to swallow.. i threw him a birthday party , i invited the whole Family.....which was a first, because he never really wanted to celebrate it before....this year i felt like it needed to be celebrated....maybe next year he won't for get his real age....

I don't know about you but i have the hardest time finding a unique and great present for my husband.. every year it's the same.. cologne, clothes, shoes! One year i was so clueless about what to get him i got him lottery tickets..lool ya.. let's just say, that my dreams of having a Audi A8 are still on hold!!

But this year, i thought, i will get him something really special, something that he always wanted and wouldn't expect ! It was so nice to see him cheese like a 7 yr old boy :)

Happy Birthday Habibi...

Tommy's well deserved new telescope

Tommy's homemade Birthday cake..Mandarin Cheesecake.. topped with fruits