its been a very long time since i wrote about hamza & huda...
om march 12th 2012 at 11:25am my son Hamza passed away.............
its almost been 8 months since he passed away but it seems like it happened yesterday.....
i miss him sooooooooooooooo much......he was the love of my life and there will be no other like him.........the pain of losing Hamza is unlike any pain i've felt and will ever feel......it comforts me alot knowing that he doesnt have to go through the pain he used to go through...weather it was cold showers in winter when he was running a high fever or him being poked over 20 times to get a vain, or watch him cry as he was seizing.........but that doesnt fill the hole that he has left in my heart.....

Huda on the other hand is doing fine.....when we ask her where Hamza is she says in heaven! randomly she will say that Hamza is playing.............

Oh and im pregnant again! im 11 weeks as of today!  im extremly scared this time around and so depressed.....Hoping and Praying the baby is healthy! need lots and lots of prayers from all you guys......please do keep me in your prayers....thanx for following Hamza's journey...will continue to update about Huda..........

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its been such a long time since i blogged about hamza and huda! but yea its been a roller coaster ride!
hamza hasnt been doing that well the past 2 to 3 months i would say.
actually since the past month hamza has been needing diastat for seizures once a week or on other occasions even 3 times a week! normally hamza would only get it like once in 2 to 3 months as needed......it worries me a great deal.
today i took him for his shunt to be tapped cuz i have this very uneasy feeling that its got something to do with his shunt! last time we were in the hospital the neuro surgen didnt want to tap it cuz its been more then a year since hamza's last revision. he said that we can actually put hamza at rish for tapping the shunt as he can get an infection because of anything going in from the outside! he said the ct scan and shunt series x ray didnt worry him and that it looked ok..so i let it go then.......i decided i had to do it for my piece of mind cuz hamza has been having these weird fevers were his hands and feets and like frozen and his head is burning hot!
so what i noticed today when they tapped his shunt was that hardly any fluid came out and there was a lil blood! that freaked me out....the doc said thats perfectly normal..........but i remember the last time he tapped it we got alot of clear fluid!............someone please tell me that almost no fluid coming out with a lil blood is normal...cuz it doesnt sound normal to me!

hamza went to the hospital today! he had a pedrication appointment in the morning and the doc wanted me to take him to make sure hez not down with phenomia again.........currently he has a virus.........they gave him antibiatic......he'll get throught it....

i thought i would write an update about hamza and huda.......they are 22 months old now!
hamza hasnt been to the hospital for ova 2 months now! thats the longest time hez not visited the hospital since he was born!........he is doing sooo much better now.....he was down with the flu last week but thank god he didnt end up in the hospital! huda is as hyper as ever! that girl doesnt sit down for 1 minute, i dont know if she even knows how!
im going to post hamza pics in the next post!.........

Pic update!!!!!!

I took these pics today! hamza is smiling in the second one!....ova 2 weeks since he came home and NO FEVER OR OXYGEN PROBLEMS! even tho he's on the vent at night only...hamza has an appointment with pulmonolgy the day after tommorow, so i'll ask them if they can do a sleep study soon and see if they can take him off the vent at night too...if not the whole night at least some hours from it!

i'll post huda's pics tommorow.....

Hamza before tracheostomy surgery!

i'll post the after tracheostomy surgery tommorow!

Update about Hamza & Huda!

sorry haven't been able to update recently...
Hamza had a tracheostomy! he had it about 3 weeks ago.....
when they put him on the by pap machine about three months ago they said that this would be the last step before he required a tracheostomy because he was going to the hospital like every week!
so yea me and my husband went through the phase were we were deciding weather we wanted the trac for him or not........thank God we did it! he is doing so well with the trac.......
now about huda.....well lets just say she is a very hyper kid!
thats it for now....will post pics of hamza before and after the tracheostomy later......

Hamza is in the hospital again......

so hamza has been in the hospital for more then a week now.....this Saturday it will be 2 weeks.....
he was doing so good one day and then next all of a sudden he needed so much oxygen and he was having 104.8 fever, the doc told me to give him Tylenol and Motrin but that didn't help out much.....i took him to the hospital the next morning.....

the minute he went in they took him to trauma.....there they put him on normal oxygen...but even with the highest amount he still looked like he was having such a hard time to breath so then they decided to put him on a ventilator. shortly after that he had ventricular tachycardia which is a rapid heartbeat that starts in the ventricles. they decided to give him a Electrical defibrillation or cardioversion (electric shock). everything was happening so quickly......for a sec i almost had a heart attack.....lol...but thank god everything got better after the first shock they gave him....
so they took him off the ventilator after 2 days....he was on high flow oxygen for a couple days....now he is on very little oxygen.....the doc wants him to be on room air before he comes home....cuz last time he went in for phenomena they let him go home with little oxygen and he came back to the hospital a couple days later...so this time they want him as healthy as possible before they release him so he wouldn't have to come back so quickly...the doc also said that if he was still requiring some what oxygen after a week then she would let him go home anyways......
thats it for now.....oh and huda is doing really well...she has been caughing for awhile now...but nothing to worry about to much...shez keeping me very buzzy!
thats it for now......

hamza is seezing again......

yea so hamza has been having seizures at night only for the past 3 nights........the doc just increased one of his medicine so hopefully that will keep it in control.....
huda on the other hand is everywere......she has started walking this week officaly...and things are never were they used to be...i clean up and 5 mins later nothing is were it used to be...........

It's been 2 long......

i know its been awile since i blogged about huda and hamza....
well for the most part its cuz of lazyness.......i've been kinda really buzzy lately....
well lets see....hamza has been in the hospital 3 times since the last time i wrote and all for phenomia.......
huda started walking!
oh and after balancing his head, hamza can hold his head straight without support for like 1 to 2 mins now!
i have a brand new neice....(born on 6th of october)...i'll post pics as soon as i can.....
today hamza had georgia pines (thearpy) come in.....he did very well.....was tracking with his eyes!
tommorow he's got thearpy with begin!...will update on dat tommorow....hopefully!

Hamza smiling......

he has been smiling a lot more then he used to.......when i took this video he was like smiling for 30 secs......i only got to get the end of it!....but glad never the less.....

love my chunky Hamza!

first dress made by me......

yea so i made this outfil for huda like a week ago! i couldnt belive i actually made it my self!......

Pics of Florida vacation......

sorry for the vary late update but here they are.....first to pic of are of huda swiming...she literly fell asleep in the water.......third pic is of hamza on the way to florida.....he is sucking on my finger while holding my hand...so cute!....last pic is of huda in the cabin.......................

Swallow study......

HAMZA PASSED THE SWALLOW STUDY! im soooooooooooooooo excited......the swallow study was on monday. the max amount he can get now is only 1 ounce....but i belive it will be increasing in no time....
he also had begin this week! he did awesome there too! first step was that he looks at lights or objects, second was focusing on the object for at least 5 secs, and the third was to trace the object by following were it goes....
so far he got the first 2 steps....(THanks god) last time he went he did the first steo and this week he did the second.....the thearpist was amazed with his progress! he was also blabbing too, which he never does....so everything is going good so far....hoping it continues that way.......
thats it......oh we are going on a family trip to florida...will be posting pics as soon as i can.....

Long time......

it's been sooooooooooooooooo long since the last time i blogged!
anywho lets see what i have to update about....ummm Hamza went to the hospital 3 times in the past 2 weeks. 2 times for fever and one time for seizures....each time we went they did blood works and CT scans but everything looked goood.....the 3rd time he went, he stayed in the hospital for a week cuz he had a cold.
oh and Hamza didnt have the g-tube changed to button yet, the day we took him he wants felling well and was congested so the doc decided not to do it then.
Hamza's thearpist at the begin progam (for vision) is really happy with hamza's progress.....he looks at lights and also shinny stuff now! so his next step would be to focus on the light or object for 5 sec! and after that would be to follor the light or object with his eyes!
Huda is doing good! i have these great neighbors who are family friends and they help out soooooooooooo much with her.....she has 5 kids and all of them love her sooo much! if i need to rest or go to appointments i just hand huda to them with juice and she is gone! huda doesnt come back to me when she is with them, cuz they pamper her sooooooooooooo much. im just glad i have them!
thats it for now!...oh and Hamza is completly bald again! is dady did it today...will add pics soon!

update......

sooo sorry havent been on here lately!....just was really lazzy....anywho Hamza had a GI appointment last week and they gonna change his g-tube to a lil button, the doc also decreased his feedings cuz he gained more then the doc wanted!....he is also going to be scheduled for a swallow study!
other then dat Huda started crawling last week! im kinda concerned about Hamza having fever.....the past week he would have fevers just in the moring, but today he had them all day long...tylenol doesnt seem to be helping, im gonna give him another dosage and see if that helps any if not then im gonna have to call his doctor....thats it for now......

Phenomia......

Hamza went to the emergency monday night....he had diffuculty breathing and fever...he was diagonosed with phenomia this time....
he was realised yesterday. he has had a lil fever today and yesterday. he's taking medicine so hopefully everything will be back to normal soon with prayers as well!
he didnt go to begin thearpy last week cuz he was in the hospital and he also didnt have babies cant wait. hopefully i can schedule that monday.
thats it for now......

Update......

i know its been long since i last updated about hamza.....but i have been just extemly lazy! lol...anywho....Hamza had his first thearpy at the Begin place last week and it was really good.....his thearpist started with singing his a song for him to recongnise her in the future...after that she massaged him.....(i gotta massage him 4 times a day.....it helps him be more alert).....then she started giving him different textures to feel and he loved it!...as soon as we got to the lights....he was out of it!....but over all it was good......

i found out something really intersting today from his georgia pines thearpist.....i dont know if i mentioned it before but the doc's said that hamza's right eye was a non seeing eye while the left one would have limited vision....well guess what.....he can see with his right eye too!......his thearpist was using the light with him while covering the left eye and he would look at it after a few secs......

hamza also went to his pedriatrion today cuz he has a lil bit of yeast infection going on....i talked to her about a helmet for hamza....one of his thearpist also told me about a headband that grady hospital does here in atlanta....so i asked about that to...the doc wanted me to got to get Hamza evaluated for the helmet and see what they think would be good for him...the headband or the helmet......

Hamza still hasnt had his hearing test done....so im trying to scheduled that and get it over with....but i think hamza doesnt having hearing problems...actually lately he has been very jumpy to every sound....the thearpist told me that, that could be a good sign meaning he is getting more alert!


ohh and we went last week to see Hamza's new cousin! she is sooo cute.....was born 8 pounds and 9 ounces....twice the size of Huda!....will put up pics as soon as i can!....

thats it...i'll update as soon as there is anything to update about...lol......

Pictures......

here are some pics of Huda and my neice Azka....

Georgia pines......

yea so hamza had georgia pines come today!....he was very alert. the thearpist said that she definetly thought Hamza could see alot more then the doctors were saying! yaah!.....
umm he doesnt have that many appointments this month...he has 2 at home....and 4 out.....pulmonolgy, neuro surgen, Begin program........will update as soon as there is something new to tell.....
i had a question actually about Hamza's movement......ummm every other baby i see who has hydrocaphlyis can move a whole lot more then hamza does at the moment....that kinda worries me...its probably nothing but still...he is like 8 months now and no actual kicking or moving his arms alot.....