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Thursday, January 14, 2016 6:19 PM CST

I haven’t updated here in a very long time. Many of my friends and family often reminded me how they love to see an update on girls' journal page and how they miss seeing their daily updates like when they were young(before FaceBook). So today i thought instead of updating on Facebook i write here few lines how things are with my 4 special needs.

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As most of you know, we are facing the last stage of this disease (MPS) with Abeerah and Khansa.
Khansa is on “hospice care” for last 3 months now and been staying home from school for more than 4 months. And Abeerah’s school also ended on her 19th birthday and she been home for 2 months now. Both girls are now very sick, 24 hours in need of oxygen to breath and need constant care. Heavy duty meds for their pains and symptoms keep them drowsy and sleepy most of the day. Same daily routine of changing their position form one side to the other side, feedings, meds, staying mostly in bed, isolated in their room for 24 hours. Always appreciated but more realized now how much school was blessing for them. Something to look forward to every day. Bus rides, school trips, therapies, school parties and looking forward for weekends. Now watching their limitations and falling health have build a knot in my stomach which feels like getting tighter and tighter by the passing hour watching their struggle and feeling helpless day after day.

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Last three weeks been very hard with Khansa. Her rapid and deep breathing, specially during the winter break time, i had to call Hospice in emergency couple of times and they arrive with increase of the Morphine for her to slow her breathing down to help prevent it from having a respiratory arrest. We came down to 40 MG of Morphine every three hours. Nurse brought us papers to sign for DNR and told how her lungs are filling up with fluid, she is declining and how we need to make ourselves ready losing her. During that awful time i get to learn that hospice is not here to help her recovered from this instead just here to make her ending pain free. by drowning her in Morphine. I had to take a stand and start making calls and pressure on hospice to give her antibiotics which she was in desperate need. Also taking her off of “Hyoscyamine” and “Rubinal” which was given to her to dry her heavy secretion which never been any help instead making matters worse for all my girls in all these years in past. Antibiotics helped her very much and slowly her breathing came to normal. Still lungs not clear, on 6-8 litter of oxygen mostly but she in peace most of the day. Still haven’t able to control her shaking episodes, having one to two episodes per day which last 3-4 hours long at a time. Full body shaking, heavy breathing, dropping of oxygen level in low numbers, heart rate keep rising up to the roof, rising temprature and heavy sweating. Hard to watch. All you can do is to stand beside her, suction her continuously from chocking, keep wiping off the sweat and pray for that misery to stop soon. Her sensitive skin caused pressure sores which ever position we lay her. Bandaging her take so much time and healing of the wounds are very slow with her. She been put on only two feedings a day for a month now and she have lost 10lbs since. Giving her bath is a true heart break for me.

When girls diagnosed in 2002, having a very rare disorder, our genetics could only told us 3 things about this. One, there is no cure for this disease, second, the girls are not going to pass age 13 and third, they will suffer terribly. I never understood the suffering part. It always stuck in my head repeating over and over and always haunt me down. Always thinking why doctor said that?? how it is even possible??? we live in 21st century and in the modern medical times, then why we were warn about their suffering a lot???? I always calm my self that i will go to the moon to help my girls if i have to and not let them suffer. I will pray hard for them till my last breath. But i guess what, i was wrong in that. For years watching their struggles, pains, Seizures and in these awful hours long of shaking episodes…



It’s not easy to be strong when you feel so broken inside. Emotions can take over you very easily when it comes to your children’s suffering.

Our life have change so much. My day starts with caring for my kids and not even know when it ends. Not sure when it is morning and when night falls. Good night sleep is a beautiful dream to me and even naps are on the edge. I have become totally home bound. I can count the times i stepped outside this past year easily on my fingers. It become so rare to go out that when i am out for kids medical needs, feel like i am doing something wrong and nervous to even drive. Barely moment for myself. Social life, marital life and business all taking a toll but you try to make the best of what you got. My day is become like a roller coaster, Some moments are hard, and other moments are harder, and some moments are like you can hardly breath. Time here is not measure in days now instead of measured in moments. How to cherish each and every moment and not knowing what the next moment can bring to us.

Raising one typical teenage boy in high school, one severely Autistic boy and 3 MPS severely ill girls. You are divided in so many directions. My each child is full of their own set of challenges and requires full attention. Some moments i live in true regret that not doing enough for each of my kid and some moments feels like what else more one person can do……

Fear is such a weak emotion that make you scared of almost everything. In these times I have learned that fear of our weakness only strengthens our weakness. I have learn to find strength from our pains and our circumstances and find wisdom in each of these heart aches and learn to grow stronger. Time does fly away regardless of how brutal some moments may be, how much filled with grief, pain or fear. Holding on to our Imman(faith) is the ONLY KEY there is and trusting in Allah swt (GOD) fully is is the ONLY WAY OUT. There is a purpose and wisdom behind everything what HE bring for us. He is the planner of our affairs and he knows what is best for us. When writer of your affairs is GOD ALMIGHTY himself then why we need to even worry??????

The Messenger of Allah (sallallahu `alayhi wa sallam) said,
“The greatest reward comes with the greatest trial. When Allah loves a people He tests them. Whoever accepts that wins His pleasure.” (Tirmidhi - Ibn Maajah)



I have learned the secret of being content in any and every situation. In last 4 months since girls have gotten severely sick, I've learned more of patience, contentment and having my full trust in Allah swt. My love and faith in HIM only have grew stronger. Having my 3 beautiful girls still with us here is a true blessing that I cannot imagine my life for a minute without them. Be with them in the morning or at night, talk to them about things going on, hold their soft warm hands, stand next to them to watch them sleeping, lay down next to them, cuddling with them, find coolness in my heart just lay my eyes on them passing by their room or watching into their bright eyes and kiss them as many times i want to which i can not even imagine to live without once they are gone.

The Messenger of Allah (sallallahu `alayhi wa sallam) said,
“How wonderful is the affair of the believer, for his affairs are all good. If something good happens to him, he is thankful for it and that is good for him. If something bad happens to him, he bears it with patience and that is good for him.” (Muslim)

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Ammar
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Tayyaba Beg

"My tests have brought me to my knees and made me acknowledge my own nothingness, and taught me that Allah is center of my life and therefore I could see him in everything”


For more updates check my Facebook "Tayyaba Beg"









Check out our new brand A.K.Z which is designed in honor of Our 3 Little Butterflies.




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Thursday, December 8, 2011 2:51 AM CST


Its been quite a while since i have updated here. Apologize to all who been checking back here for an update. Since face book came along, i started updating there and this journal left unattended. Now i came to know so many of you who followed my journal from all over the worlds, don’t have a facebook account. I am so thankful and humble for all the support, love and prayers received form people close and far this past year and receiving heavy volume of requests for an update. Today i am making a time to write an update and in future i will try my best to update here regularly.

In a year so much have happened here. Kids are grown up, so many changes of regressions had taken places. I hate the word regression. It means permanent damage here. Having strength, acceptance and being patience is a challenge but i came to learn that having faith to the lord and leaving everything up to him makes it easier. Allah the Almighty says: "... Victory will be yours; and put your trust in Allah if you are believers indeed." (5:23)
Whatever we face every day, not because it is easy or difficult. The ease or difficulty is based only on the level of Divine help. Nothing, nothing is easy, unless God makes it easy on us. And nothing is hard if GOD makes it easy on us.

“We have certainly created man into hardship,” (90:4)

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Abeerah’s condition is worsen, Back and forth with pneumonia and hospitalized. Suction machine, pulse oximeter, nebulizer and oxygen tank permanently placed here for her and use frequently. Upper chest congestion is keep coming back. Seizures have been increased. Sometime 2 or 3 times a week. Some are good days with her but mostly she is not well. Many sleepless nights here caring for her, some time 2 girls at a time and some times all 3 of them. November 19th she turned 15 years old. Such a BLESSING from my Lord. So thankful. The day she got diagnosed, we were told this day will never come. How wonderful is every moment we have her here but I know time is running out. I can’t imagine my life with out my daughters. Every smile, kiss and hug i can have from them is priceless. I feel pride having these angels in my life. They taught me so much and continue to change me each and every day. There smiles makes me look forward for each day. They taught me to be thankful for every thing and i have learn to appreciate the smallest things in life and celebrate every given moment.

Khansa also having frequent congestions. Khansa’s bones took a major turns. She have 30 degrees of Scoliosis. and out of shape hip. Scoliosis is common in MPS kids and it cause curvature of the spine. She sit leaning on her left. Unable to stretch or straighten her body or lay flat. Her half of body always hanging in the air out of her wheel chair and need to help her sit straight with pillows. This effecting her so much, shortness of breath, constant back pain, digestive problems, Constant tired legs syndrome, hip and knee pains. Doctor said there is only surgical treatment available which our doctor don’t recommend for her age and diagnosis. School orthopedic recommend a body jacket and back and hip braces for her and physical therapy. Braces been ordered but due to insurance issues, its put on hold along with feet braces for all 3 girls.

Zahra have been regressed so much this past year. She had couple of dental surgeries done this year. She also having problem walking. She started to take steps backward. Had a very bad fall in school this summer left a huge bump on her head for a month. She been having a difficulty over a year now for taking liquids and meds by mouth. She been on soft a puree diet for while. Less liquid caused constipation. Last couple of months she start having much difficulty. And last some weeks she barely eaten, choked on every bite and started loosing weight. November 11th Zahra went under surgery to placed a feeding tube along with her sisters Abeerah and Khansa who also went under surgery for the replacement of G-tubes since their tubes were really worn out and started to leak. Now Zahra is fed 90 percent of the time by G-tube and i am still time to time try her favorite foods pureed and feed her by mouth if she swallow it well, great, otherwise we switch it to the formula through feeding tube. Its great to have the option now. Hardest thing for mother to now her child is hungry. All meds and water given through G tube. And all this made a difference. Thankful to GOD and medical help we got Here and who ever invented this feeding tube, If it wasn't there, I would have lost them long time ago with starvation. How nice to have a full stomach.

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Great news: Finally finally, after much requests, we received the bus with 3 wheel chairs tie down.

Ammar.....needless to say he is keeping me on my toes. My little man have way more energy than the 100 energizer bunnies together. House turns upside down in minutes. Disaster would be small word where Ammar left unattended for minutes. He made some improvement with his speech and use couple of words now and can label objects but with constant request. I just love when he use words to explain me what he wants. Such a precious moments. His behavior is keep on increasing with time. Jumping, climbing on everything, Flapping, Running, constant making noises, without much language skills or imagination, crying and never ending tantrums if things not going his way. His sleeping disorder cause so many sleepless nights here. Didn't have success with Meds. It make him much more aggressive and drugged. He constantly bites his arms out of frustration. Also biting anyone front of him is back again and i believe its due to dental issues. His recent dentist visit showed, he have several small cavities. Him being hyper and unable to sit still, dentist refuse to do the dental work in office and recommended O.R visit to get all dental work done. Not having dental coverage with 4 special needs been a huge financial expense this year along with much more other medical expenses that is not covered by our insurance keep on piling up.

Bilal is back in public school this year and going to 7th grade. Seems much happy and attending it well. He also going after school hafiz program. He is in that age where everything should be fun time only. And much anger toward house chores. Typical 12 yrs old. My boy is growing up. Masha Allah, May Allah make him among righteous and coolness of parents eyes. Ameen


There is more to this story. Another chapter of our journey...... Beginning of this year, Increasing behavior of Ammar led me to find help from a DAN doctor which i been recommended many times, searching and talking about it over a year but because of the financial expenses of the treatment didn’t allow me took that step. Finally i find one doctor closer by. She send him for blood work to see how is he doing. Result took 2 weeks and it showed high lead level in his blood. We were just trying to figure and start the treatment that “health department from State of NJ” visited us unannounced to find why Ammar’s lead level is that high. They check our house for possible lead painting in the house since mostly houses in Teaneck are old and before 1970‘s all paints were used had lead in it. They found lead paint under many new coats of our paints which we did over the years. Where more coats have done show less lead. I know for fact, he never eaten any paint chips. But Short after the inspection, we received the notice from the STATE for a renovation and emptying the place during that and $1000 in fine daily after the given due date. It was like bomb dropped first. Look huge mountain front of us. Been living 10 years in that house, now we need to move out with 4 special needs and worst part girls wasn’t well. How could they do that to us?? Then needed to be strong, Accept the will of Allah since nothing happens without GOD’s will and hold the believe strong, “what ever happen, happen for a reason. There is always good in it for us in his plans. He is the best of planners. HE never want anything bad for us. Put strength together by turning to HIM and asking for him for help.”
Apartment hunt wasn’t easy either, State put the condition that to test for lead the place as well where we are moving to and no home owner liked their place to be tested. While i was house hunted, Zarrar got busy to find the contractor for lead abatement. May 30th, we moved in to a Apartment 5 minute drive from our house, not far. Moving from house full of STUFF that we gathered in 10 years to a smaller apartment was another challenge of what to keep and what to throw out. So much stuff thrown away. Such a great lesson learned that “keep life simple”.
Long story short here, after lay all our options, pros and cons list.... Last 6 months my husband worked around the clock, day and night, twice took the extension from state for the renovation due date, came up with so many plans daily while Paying 2 places (mortgage and the rental). With much of financial, physical and emotional roller costar day by day, finally we came up with a plan of knocking our house down and making a new house with handy cape accessibility for growing needs of our 4 special needs. Specially bath room on the first floor(needed it so much and been praying for it for last 12 years so badly)

November 3rd our home where my kids grow up, So many memories, laughter and tears, which me and Zarrar had put our sweat down fixing it, torn down to the ground.
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Zarrar Beg: "I've learned that goodbyes will always hurt, pictures never replace having been there, memories, good or bad, will bring tears and words can never replace feelings."


Struggling through the ocean of this life, sometimes it’s so hard not to let the world in. it was hard to watch letting it go but this been such a learning experience to me. A total reminder to ourselves. Learn all wordily things mean nothing. How much love, care and money we pour in to this house. We move in to an abandon house with 4 babies. Me and my husband worked together fixing the house, no money to hire anyone. We really put our lives on it and in the end we have to let it all go. I can only imagine how hard it would be leaving this world.

Now with much excitement, being humble and million thanks to Allah (SWT), we are building our new home “SOME PLACE VERY SPECIAL”
A new start.....





Couple of months ago some great friends nominated Zarrar for shire care award and so thankful by the grace of GOD he won that award.SHIRE BRAVE AWARD

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Tayyaba Beg
Allah allows some people to suffer in order to test their patience and steadfastness. Even Allah's Prophets and Messengers were made to suffer. Prophet Ayyub (Job) is mentioned in the Quran as a Prophet who was very patient. People sometimes suffer but their sufferings heal others and bring goodness to their communities.
Allah sometimes allows some people to suffer to test others, how they react to them. When you see a person who is sick, poor and needy, then you are tested by Allah. Allah is there with that suffering person testing your faith.


Thursday, June 4, 2009 0:26 AM CDT

Its been so long again. There is so much to share with you all. So much have been happening here. Its been a emotionally hard couple of weeks. We lost one of our MPS friend Andrew who we get to know from the MPS forum. Never met him but become close to him and the mother over the years through internet. I can only imagine the pain parents are going through. May Allah give his parents strength in their hard time. Amen

First Thing first, my mother's day went great. I spend all day with my kids. Weather was perfect that day so we all spend morning in the backyard and enjoy our time together and then i took them to our favorite spot by the water in the park where i use to take them when they were very little. I missed Bilal till evening since he was with his father cutting down his uncle's tree.
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I loved all the presents received from my kids. I am really thankful for my beautiful children. They all very special to me. I count each day as a blessing to be with them. I can't imagine my life without them.

For MPS awareness Day, give out some cards and ribbon. I had a small party at my house on Saturday. We celebrate the day with purple ribbons, cards, balloons and purple icing cupcakes. We pray for all our MPS kids around the world to find a cure for this horrible disease sooner so no child have to suffer any more from MPS.
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We had Islamic games on memorial day weekend. MPS awareness booth was also set up by Noor-ul-Iman school's children. They did an amazing job getting MPS awareness among 1000s of people by distributing flayers and ribbons. It was so nice to see so many wearing purple ribbon for our kids. Kids had a great day out. We had a great time watching games. Zarrar won Gold medal in archery and my uncle received silver in table tennis. And Bilal came on second place in Table tennis also but again there was only two kids in his age group.
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Since Ammar is having a very aggressive behavior time to time since last two months. Hitting and biting out of frustration specially his sisters. Lately it had increased so much. Living under one roof, and trying to keep your children a part is so difficult. We never know what is next move Ammar will make. One minute happy laughing Ammar so gentle with his sister, all sudden will scream out loud and bite any one front of him specially his sisters been his biggest target. Trying to keep them safe from him any way i can but he is too clever and find his way to reach them. Taking them to the back yard together or just travel in the car together become a challenge for me not knowing what he will do next when he can come out of his seat belt.



I install double child safety door to keep him out but he find the way to get in. Girls school notice the bite mark and call to warn us that next time they will call DYFS. Since it been a huge struggle to keeping him away from the girls. For the love of TV and AC in girls room, he like to spend time in that room and trying to get in any way he can. I been spending hours on the phone to find any help from any where to over come his aggressive behavior. Get him more therapies and programs for him. Also trying to get in the bottom of what school been doing for him.
His getting in to every thing and keeping me busy thing is still on. Daily i go through so much cleaning after him. Nothing is safe here from him. Every time i get busy with the girls, i know i have some thing big after ward to deal with.
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Abeerah' s seizures been increased. Its happening more frequently and more uglier than ever. It is very scary when she bite her tongue during seizure and blood cause gagging and chocking during seizure. Neurologist increased her seizure medication and add COLONAZEPAM with other seizure medications. Friday we will see Dr and figure out why more seizures and how to help her. She is also gagging a lot during night and need to keep an close eye on her to avoid chocking on her saliva.
We having some better days with her since weather is great. Her smiles are priceless. Her talks in her cute voice is so appealing my ears. I LOVE to see her happy. Her sensitivity to heat become more intensive. We have to keep her cool all times to avoid possible seizure or passing out.

Khansa's body making her very uncomfortable. She is not comfortable in sitting in any position or lying down on her back. Her legs and turning inward feet gets cramps up a lot. I had couple of visits to Pediatrician for Khansa's crying out loud. Pediatrician was worried to see her back arching up but she said there in nothing we can do to help other than sugary which she do not recommend since she is so young. She also start Khans on reflux medication which did help her discomfort some level. Her drooling been increased tremendously. Its like faucet have left on. I am going through so many change of shirts and clothes diapers(which i find after using every thing is the best absorbent materiel). At night Khansa sleeps on her side or as a fetal position and needed to be give turn and change position. Her feet tun purple often due to poor blood circulation and Dr told that keeping her feet up or messaging them often will help her. Since she don't move much and siting on one place causing her skin breakage in her back and on her hip area. I am really worried for Khansa and my heart sinks looking at her condition turning worse.

Zahra is doing great. I am so happy to see her able to walk her own to the trampoline and jumping for hour in the back yard better than last year since she been wearing the support jacket to keep her back from bending and giving her support to keep her balance well. Her foot growth been stopped and she been wearing size 12 shoes for last 3 years like her sisters. Her feet also start turning and PT put tapes on her feet which helps a lot. So thankful That she is doing well. She is the princess of our house.
Bilal been doing well. He have lots of school projects to complete this week. Last day at school will be 24th of June. He have 100s of plans for the summer vacation. Developmental pediatrician thinks we should keep him involve in summer school or some kind of camp. I hope i can find some thing for him to keep him busy.

Please do let us know that you stop by. Your support means a lot to us. Please keep my family in your prayers.

MPS CHILDREN


Friday, May 15, 2009 1:16 PM CDT

I hope you all are doing well and enjoying the beautiful days of spring . Thank you for keeping my family in your prayers. I am so thankful to be back to be on my feet and that awful head ache have gone. We are having a beautiful spring days here. Every thing looks so green and beautiful. This is my favorite time of the year since it is a MPS friendly weather.


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Please remember in your thoughts and say a special prayer this Friday for all our little MPS friends who are suffering from this disease, the one have already lost with this disease and specially families who have to watch their love ones in their most suffering. May 15th is a MPS awareness day. Please help us spread the word. Wear some thing purple to honor these children and show you care. Please tell some one what is MPS and what it does to our children who are dealing with MPS.

MPS AWARENESS VIDEO

Only your support can make a difference. Please tell your family, friend or co worker about MPS. Together we can make a difference.
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Please keep my family in your prayers and keep on checking back here for more updates and pictures.

Please keep Andrew in your prayers. He is loosing his fight with MPS. Please keep his parents in your prayers to ease their immense pain and for their strength.



Saturday, May 9, 2009 9:51 AM CDT



Happy Mother's day to all moms.

Before I was a mom

I never tripped over toys
or forgot words to a lullaby.
I didn't worry whether or not
my plants were poisonous.
I never thought about immunizations.

Before I was a Mom,
I had never been puked on.

Pooped on.
Chewed on.
Peed on.
I had complete control of my mind
and my thoughts.
I slept all night.

Before I was a Mom,
I never held down a screaming child
so doctors could do tests.

Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night
watching a baby sleep.

Before I was a Mom,

I never held a sleeping baby just because
I didn't want to put her down.
I never felt my heart break into a million pieces
when I couldn't stop the hurt.

I never knew that something so small
could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.


Before I was a Mom,
I didn't know the feeling of
having my heart outside my body..
I didn't know how special it could feel
to feed a hungry baby.
I didn't know that bond
between a mother and her child.

I didn't know that something so small
could make me feel so important and happy.

Before I was a Mom,
I had never gotten up in the middle of the night
every 10 minutes to make sure all was okay.

I had never known the warmth,
the joy,
the love,
the heartache,
the wonderment
or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much,
before I was a Mom ...


Its been quite some time again since my last update. Time is just going too fast. Weeks passing like a days these days. Last three weeks been busy with kids spring break.
First Abeerah, Khansa and Zahra had a week off but we did not do much since days were too cold to take them out any where. Just relax at home with them.

Next Bilal's spring break. He had many plans for his vacations but things did not went like his plans. He wanted to visit his aunt in MA but that did not work out with some reasons. Other things in his list was, he wanted to go on the beach, parks, Malls and museums. It was nice having him home. He helped me making other kids ready for school and then we did breakfast together every day. First three days it rain all day. So we cut the out doors and just visit places with roof. We did some shopping and rent movies to watch at home with all kind of junk food to eat. Photobucket
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Last couple of his vacation, dealing with Ammar's behavior issues and staying up all night left me without any enegy for the day to run around with Bilal. Also he end up getting some cold and cough. So according to him, he had a bad vacations.

Then there was Ammar's vacation. His vacation do not know if will be remembered by him but by me will for years. It started with his very aggressive behavior toward every one. Biting, hitting his head to hard surfaces, not sleeping at night, getting in to every thing that comes is in his vision and tremendous energy made me overwhelmed. Also weather took a sudden change. Hot weather which i was not even ready for it with (fan, Ac and summer clothes) Yet, made Abeerah sick and she also had seizures. Khansa started to cry a lot. Zahra had a very hyper behavior. I only find couple of time to take Ammar to the park and the mall while other kids in school.
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Khansa's crying increased by Friday(May 1st). And Zahra had very very hyper behavior. Trying to figure out what is bothering them is always like a hard exam for me. Put my guessing ability to work. Try every thing i can think off. Tylenol did calm them little. I thought Khansa had a reflux issue since she did not want to lay down at all and cried after each feedings. I add Pepcide with her meds and that did helped her a lot.

Saturday(May 2nd) morning find Zahra with her ear leaking grayish thick liquid. Call the doctor and she gave her antibiotic with drops for an ear infection. I had some relief that at least we know what is bothering her. Entire day went really busy for me. Ammar kept me on to cleaning after him whole a lot. None stop keeping him from hanging out his more than half body through the windows or finding him out in the yard totally naked. Khansa and Zahra was keep on crying since Zahra medication left behind closes pharmacy door who close too early with their new schedule. Bilal wanted to go to toys R us and got upset for not taking him out any where. What a rough day. That night, i was happy that day was over. I went to bed fine and woke up Sunday morning with high fever, throwing up and could not even able to stand with dizziness. My Sunday went really horrible with sickness, no help available and kids needs constant care. Ammar did his best in making messes. In kitchen, all the raw foods which i keep in cabinets reach to the ground and none clothing drawers left in the house with clothes in it while i must have pass out with fever. Each time i could stand i was on my knees praying hard to make me well. I can not afford to be sick here. My 4 kids are special needs and all they got is me.

Monday(May 4th) Abeerah also got fever, Zahra with ear infection, Not happy Khansa and Ammar who was up till late night 5am running one corner to other as loudest as could be, and now could not open his eyes. So only Bilal went to school that morning. I was still running fever. Could not able to stand up with dizziness. Had to get up once girls was up. Happy that evening Lilly came to help. She stayed 4 hours and i took a rest(kind off). Tuesday early morning Khansa had 3 hours of non stop crying out loud. Could not figure out what is bothering her. This time Tylanol did not even helped. After sending other kids to school, i made an appointment for her. Hour before her appointment, her left ear started leaking blood. Zarrar pick Bilal from school early so he don't have to go later and can watch the other kids home so i can take Khansa to the doctor. Khansa was really happy at doctors office. First time in days i saw her smile. Dr said build up pressure was bothering her now ear drum is ruptured and pressure is released that give her relief. Poor baby. Coming back my head was so dizzy and i could not focus with my vision so i stop some place for while. Feel little better and slowly drove home.
Finally all girls are doing much better since Thursday and i am so happy for that. What a relief it is. Still giving Khansa and Zahra antibiotics but drops in the ear is quite struggle to hold them down. I still don't understand why ear infection to two girls and at same time.

I am still not fully recover from my sickness. My head been really Dizzy all the time. Its seems a huge pressure on my head like carrying some heavy burden. And i can not keep my eyes focus. It is really hard for me to keep up with every thing and specially run after Ammar all day. No medication helping him so far to put him to sleep. I am so over stressed over his school issues. I feel like time is just wasting and we so running out of time. And also over not receiving any help for him from any where. I talk to her pediatrician for him and she think i should call DYFS for him and that is the only way i can get state to help me out with services. But what i know, DYFS do not have good reputation. All they do is take the kids away from parents. I know a lady who ask them for help and end up loosing her kids. It is just hurt me so much and frustrate me to see my child turning manic and not being able to do any thing to help him. I think once you become a mother, your worries never ends.
Today and always praying for my children.


Friday, April 17, 2009 10:33 AM CDT

Its been so long since i update here. I am really sorry for long delay this time in updating. This winter been really busy here than ever. I want to thank you all for your emails, calls and guest book messages for requesting an update. Your love, prayers and support means a lot to us. Thank you thank you thank you.

Since most of you wondering how every one been doing here in last months so i will go over brief update. Since the christmas Break kids started to get sick one after other and over and over and over. Flue is like never left my house the entire winter. I was overwhelmed with kids needs and their growing care. Keeping up with all 5 kids appointments was overwhelmed for me. Some time taking 2 kids at a time or some time running one doctor to other and then rushing home for others at home.
One other reason for no update here was, the keyboard of my laptop which i use to write got damaged by Ammar and did not get fixed till recently.

Abeerah had the toughest winter ever. She been very sick the entire winter and hardly made to school. She only made 8 days to school since the winter break. 3 times flue, twice chest infection, bronchitis and over and over diarrhea and also blood in stool. Her seizures activity been increased. She is having a seizure every week and some time twice a week. Last month she start constant movements and we/doctors start our guessing what could be bothering her to help her. Many trips to the doctors office. I been to the pediatrician so many time this winter that i feel like living there and just visiting home.
We also saw Dr. Alexander for her feeding tube leakage and he thinks that her tube is worn out and need to get replaced immediately. Since we are looking to make an appointment once she start feeling better to go under surgery.
I am glad and thankful she is doing much better these days. Can't wait for a warmer weather to take her out.

Khansa, we been really worried with her weight. She is not gaining any weight but growing taller fast making her look more skinny and her bones feels sticking out from every where. She seems in lot of pain and cry a lot. She can't sit too long on one place and constantly need to change her position. Increasing her calories have not made any difference still and also being constipated often makes her very uncomfortable. Her blood circulation also been a issue and often find her feet turning purple. Her back is also turn more in to arch and she is always sitting leaning toward left side. Dr. thinks there is only option is surgery and for her condition and syndrome, it is not recommended. I am looking forward to see a orthopedic for their opinion. Her drooling have increased and need to change her shirt many times. I feel sad and my heart breaks each time changing her or giving her bath.

Today is Khansa's birthday. She is 11 years old today. Many prayers for her.

Our princess Zahra is sweet as can be like always. We lost her smiles this winter with all that sickness but we still have her hugs. Hopefully once weather get warmer and she can go out and jump on her trampoline and enjoy out doors again will bring our laughing Zahra back.


Bilal is a wonderful boy. He is sweet and caring. I can not ever be thankful enough for him to be given him in our lives. He loves cooking these days, He learn to cook an eggs, grill cheese sandwich and make an excellent tea. My worries are always sky high for him.
Last some months we been over stressed with Bilal's behavior, falling grades and non stop teacher notes send home. It took some heart to make an appointment with developmental pediatrician for our 5th child to be labeled. He got diagnosed with attention deficency/ADHD and also discover his eyes are in bad shape. After an eye exam, he wears a glasses now and also taking a medication for his attention issues. Zarrar taking every effort to spend more time with him. He start dropping and picking him up from school every day, keeping up with his tests and homework which made a great difference. I am so great full to tell you how happy we are seeing an amazing improvements since. His grade from Dzz to getting back to Azzz. And these little happy moments keep us going.

What can i write about Ammar. My little boy, cute as much cute can be. The truth is my life runs around his schedule these days. I feel really sad watching him going down fall. My heart and mind just get really tangled up with the worries and unable to take enough efforts for his improvements in his education matters. He is a very active, non verbal, staying on his feet exploring and putting his hand in to ever thing, a very busy boy. Always up to some thing. Makes me up to cleaning nonstop. Last month we had to face him very aggressive. Sudden getting up from playing and screams out loud, run and and bang his head every direction to walls. Find any object or toy and just start hitting on his head with it. Then this aggression turned toward his sisters. We try every way possible to protect them but he find a way to reach them and bite them. Dr thought its behavioral and put him on medication which made him more hyper. Dr, could not find any thing wrong. But finally, after putting him on an antibiotic for possible throat infection, we had some relief but now i am always nervous when he is around his sisters since one of his bite caused a terrible infection on Khansa's arm and which is still not heal yet.
This winter, i also been working to make him potty train. Its been a huge struggle and lots of trips to the bath room each day which is upstairs. He is going most the time if i am on time but still no improvement in his understanding to use the toilet his own.
Ammar's pictures
This week girls are off from school for spring break. Next week Bilal's spring vacation and then Ammar's break will be end of April. Can't plan any thing to do when all are off in different times.

I want to thank you all for your prayers. I also want to say a special thanks from bottom of my heart to Isabel Jurado Foudation for sending us some hours of respite help. I could not do it all without their help. Their fund raising walk/run is going to held on May 2nd. Please participate to help the organization in any way you can.


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Some of you ask, so this and above pictures are taken at Qasim's wedding. If you are following the journal from start, must know him. He is Zarrar's nephew. He given us some of his time helping us in his teens years when we need the most support and help and did not had any. We can never thank him enough for his help and always appreciate his support. He made a very special place in both of our hearts. January 16th he got married. We enjoy the wedding and we really pray for all the happiness in the world for him. Yes i did sew the girls dresses.


Saturday, December 20, 2008 6:43 PM CST


Just a quick little update

With all your prayers, things are going well here lately. Alhamdulillah.
Zarrar came back home safe and sound on 12th and since he is back, things been very busy around here helping him catch up with his routine.

Abeerah is doing better and happy to tell you that she is seizure free for last 10 days. I hope that continue and no more seizures for her. But she is gagging a lot all day and at night it get worse.

Khansa is doing well. Have not gain any weight still.

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Today Zahra's birthday. My sweet little princess turn 8 years old. She is doing really well. I enjoy every moment with her. Her hugs are so sweet. Her smiles and giggles are priceless.


Both boys are keeping me really busy these days.
Thanks for stopping by. Keep my family in your prayers. Your support and prayers means a lot to us.


Tuesday, December 9, 2008 2:24 AM CST

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First thank you for coming here and reading upon my family and keeping us in your thoughts.
Need your prayers for Abeerah today. She having more frequent seizures this week. Thursday she had a seizure in school. Friday two seizure one seizure after other in school. And today she had another seizure at home which really shook me up. She bit on her tongue again and bleed during seizure. After 5 minutes, inserting DIastate she relief herself and fall a sleep. Unfortunatly Bilal was there with her watching and saw her. He got really upset and thought she is going to die and call 911. With taking care of Abeerah, i had to calm him down too. It had left a impact on him. I hate MPS. Some times moments comes in your life that you feel so helpless. Pain just shoot through your heart like some one stab you, stomach feel pains and eyes can't hold in the flow of your tears. Then what you do in times like this????

Moments like that comes a lot in my life and i live through holding my faith tight. I believe neither the good things of this world are forever, nor the bad things eternal. We are here for a short time. Pains and suffering are test and trial for some people. Allah allows some people to suffer in order to test their patience and steadfastness. Even Allah's Prophets were made to suffer. Prophet Ayyub is mentioned in the Quran as a Prophet who was very patient. Good people sometimes suffer but their sufferings heal others and bring goodness to their communities. People learn lessons from their good examples. Those who will pass in their tests and trials will find an eternal world that is perfect and permanent. The Quran tells people about Paradise, which God offers to them, describes its great blessings, and proclaims its beauties to everyone. It informs people that Paradise is one of two ways of life prepared for them in the afterworld, and that every good thing will be theirs in Paradise to a degree that surpasses our present ability to imagine. It also shows that Paradise is a place where all blessings have been created perfectly and where people will be offered everything their souls and hearts will desire, and that people will be far removed from want and need, anxiety or sadness, sorrow and regret. Every kind of beauty and blessing exists in Paradise and will be revealed with a perfection never seen or known before. God has prepared such blessings there as a gift, and these will be offered only to people with whom He is pleased.

Zarrar have done his hajj. He will be coming back home on Friday. Its been a tough 3 weeks without him. i pray for his safe journey back home. Insha Allah.

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Today we celebrate EID-UL-ADHA. The Eid ul-Adha comes next day from hajj and simply celebrates Abraham’s willingness to comply with the request of Allah to sacrifice a beloved son. At the last minute of this sacrifice, Allah spares Abraham and allows him to sacrifice a lamb instead.
This sacrifice of generally sheep or goats is shared with family, friends and the needy.
Bilal is off from school this week. He wanted to go for prayer. For that he helped me making the girls and Ammar ready for school so we could leave early for the prayers. (not easy on me send my kids to school on holiday time). It was very very cold today. Prayer was beautigul. Almost 3,000 people were there. during speech, a lady sitting front of me with her three little girls and keep taking her daughters pictures. Hugging them over and over put me in teras missing my angels.(holiday time is not easy for me). Meeting all the people was fun. Bilal got really upset becasue all gift finish when his turn came to get one. He were really sad before missing his father and this on top made him angry so I took him out for breakfast to make him feel better. He order pancake with lots of wip cream and strawberries. I wanted to take him to toys store but it was time for Ammar to get home so we returned home.
Please check back soon. i will be adding pictures of Bilal's hajj day at school soon.
keep my family in your prayers.


Tuesday, December 2, 2008 6:36 PM CST

I have not update here for some days. Time sure passing fast. Zarrar have left for Hajj this year. He left on 21st of November with group of peoples for 22 days. It is like when some one drowning, he tries every possible way to save himself. That is what we trying to do. Last thing we have is to pray hard from GOD for help to ease our tests and help us and give us strength to bare the burden of our children's' suffering. Since girls diagnosed and we get over with the stem cell transplant decision, I wanted to visit Bait-Allah in Makah with my kids. I wanted to go there and make prayers for my daughters' cure. Give them lots of Zam Zam water. Due to traveling difficulties with kids and expenses, Zarrar decided to go himself this year. I could not be more happier than i am because i do believe it will be great for him and his family. May Allah accept his hajj, accept his prayers and all our scarifies that we made for him to able to do this. Its been very difficult without him for sure. Being a apart from him after long time is very hard along with all the stuff i am taking care off all my own right now. But thank GOD, with HIS help, i am managing alright. I was finally able to talk to Zarrar after whole week of waiting. He is doing alright and at present staying in Madina. I am praying for his safe return.

For Thanksgiving, i was invited by Zarrar's family to Pennsylvania but i was not sure that i can drive my own that far. Without Zarrar and Bilal who left with his Aunt day earlier, seems really boring at home so i decided to go to be with the family. Pack up and left hoping to make it there before the dinner but way there i took a wrong exit and got lost some where. Did made it there but late when dinner was all done. It was nice to spend time with family for a day. Miss Zarrar terribly. This was the first year in long long time when we both did not cook the dinner. Bilal had a great time with his cousins. For me, keeping up with 4 kids diapers, feedings and chasing after Ammar was tiring. I did made my traditional left over turkey soup next day.

Abeerah had a very bad grand seizure at 2am on Monday morning. I have not seen her like that before. it was 8 minutes after i got there but not sure how long she was having it before. It was heart breaking. I don't think i will ever be use to these seizures. She bit on her toungh hard and it started to bleed. As i try as her mouth get tighter. Also turn blue with not getting oxygen in. Her tip of the toungh turn purple and i thought it will fall off the way she was biting hard on it. I end up giving her diastat to stop the seizure. She had 103 fever in the morning and aspirating a lot and all day not her self, unable to hold her neck and way too much drooling going on which causing her choke. I stay beside her all day after other 4 kids went to school.

Ammar's behavior and sleeping Issues seems increasing and her words and understanding decreasing day by day. He always up to making some mess and if stopped from there, he start some where else some thing. He start screaming out loud a lot and also hit if stop from some thing. I am alway on my knees cleaning some thing after him. I try to make a safe room for him but that need a lot of work to secure all every thing specially electrics, light bulbs and windows and including curtains which he start hanging on. Me and school are working with his potty training and he start peeing on the toilet. It is so great if i can keep up taking him to the bathroom every hour or two other wise more mess to clean.

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Khansa and Zahra are doing well. I am very thankful for that.

Bilal been having a issues with going to the bathrooms or next room or in dark since he learn about JINNS in his school. He is terrified and staying really close to me. I am trying to make him overcome with his fear.

Thank you all for signing in our guest book and letting us know you stop by, It means a lot to us. Please do not think that i complain here which i don't. Life here is sure overwhelm to keep up with every thing, But it keep me constantly remembering of my creator. I have no complains at all. I know and believe that HE do what is best for us. I am so thankful to HIM for so many things. I love and thankful for my family and every little moments i have with them. I count all as HIS blessing.

Please keep praying for my family.




Monday, November 17, 2008 1:54 AM CST


Abeerah had an other horrible seizure yesterday morning at 6am. Me and Zarrar heard a loud scream and we jump up from the bed and we both ran to her. When we reach to her, she was gasping for air. We both hold her head up and clean her up. After while her curled up, tense body got release and she fall a sleep. It is just hard to watch your child go through these horrible stuff and only thing we can do is sit and watch. She been not herself since. Most the day she slept. Please pray for no more seizures for her and we can find a cure for MPS soon so no other child have to suffer. Ameen.

Abeerah's 12th Birthday is on 19th of November. It is amazing how time is flied by. My baby girl, my oldest child is already turning 12. She been through so much in last 12 years. I am very thankful for each day is given to us with her. She is very special girl. She is a true blessing in our life. The day is a really sad day when i can't get her smile in the morning.

Khansa, Zahra, Ammar and Bilal are doing well. We did not do much this weekend. Just stayed home, relax and work, work and work. Saturday, we had a great weather here. Bilal, Ammar and Zahra went out in the backyard for couple of hours. Zahra loves going out. Her laughters are so precious. Since i turn their play room in to girls bedroom and there is not much place left for Zahra to walk around and no more going upstairs to sleep at night, makes her cranky and when she is cranky, no one is going to hear any one or any thing here. So i have to take her out of the room and let her walk around the house but she needs assistant since she falls and trip a lot and throw any thing comes in her way.

Thank you for checking on us. Your support means a lot to us.


Tuesday, November 11, 2008 9:59 AM CST

Its been really sad here since i got the news about the loss of another MPS girl name Maggie. Maggie was 12yr old. She also lost her Brother Joe due to MPS, 6 months ago.You can watch both, brother and sisiter by clicking here. This is very hard for parents that word can't describe. Please keep Langford family in your prayers for their strength.

Abeerah, Khnasa, Zahra and Ammar been home most of this week. First election day off and then teachers conference days off. So i been busy at home with the kids. Girls been doing well lately other than having sleeping issues at night with Abeerah and Zahra. Both been hyper and very cranky lately. I know Abeerah is cranky due to her formula change. There was some problem with the compnay and they are on back order for the "Resource for kids", so Home medical send me different feed for Abeerah in emegency. But since a week i am giving her, She don't sleep at night and very cranky and hyper most of the day. I tried to alternate with soy milk and searcing for the old formula for her.

Ammar having trouble sleeping at night every night for long but last 5 days been worst. I am struggling at night to get some hour sleep. He is on the move and open the windows and door middle of the night and make the whole house cold. He is not scared of the dark at all. His safety is big issue for me. I am in process of moving the girls beds downstairs to able to give their room to Ammar and make a safe room for him.

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Ammar is having fun.


Khansa and Bilal are doing well. I am very thankfull for that. Bila is getting better in is studies. (I have to stay on top of it off course)

Last week our main drain backed up and cause damage in the basement. It was couple of rough days. Laundry satrting to pile up high but i am thankful that is taking care of now.
Lilly and her daughter Keumi been coming to help me out for 3 times a week for few hours. They been a great help. it is wonderful to able to leave when they are here for appointments of just to pick up groceries. I can't ask more than that.

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Our trip to local park>

Thank you for checking here. I am very thankful for your prayers and support. It means a lot to us. Please keep it up.


Monday, November 3, 2008 11:06 AM CST


Need your prayers for Abeerah.
Another seizure for my baby girl within 10 days gap this time. This horrible horrible thing just shook her up at 5:AM. I am glad that i was up for some reason and taking a walk around to check on girls to change their sides or covering them in to their blankets which they always take off. I heard Abeerah's gasping for air on the intercom. Actual shacking stopped when i reach to her but her heavy breathing, trying to take air in and between gagging stayed on for long time. She was not her self all day today. All the intensive drooling keep her gagging. By afternoon she also had a fever. She looked little better and gave me smile when i put her to bed tonight. I hope she recover well by tomorrow. Kids are home for election day off.

I am very thankful to all of your kind prayers and support. It means lot to me. I been really happy lately and having some good days with kids over the week. Really thankful for these blessing days from above. Kids crying and pains at peace makes life much enjoyable and felt easy to deal with. Hard days in life always give you more appreciation for the easy days.

Zahra had fever/cold on Friday but she felt better by Saturday. We had a visit from our great old friends Rachel and James. They have an addition to the family now and their baby boy is really cute. They been very nice to us and visit us time to time. Very few of friends we have like that.

Sunday we had a great day. Every one was doing well and weather was beautiful so i took all my kids to the park. There is a new play ground build which i was told build for special needs. I been wanting to check it out for some months now but taking every one out needs lot of my strength which i do not have lately. I was able to put my self together for this one. First parking took a long, after keep going in circles for some time. Beautiful play ground but so crowded with kids and adults. i don't believe they should call it play ground for special needs because i did not saw any one other than my own. I stand there for an hour, just to put Zahra on the chair swing when all parents just keep pushing their kids on it knowing that i am with 4 special kids waiting for one swing to get empty. Before i walk toward getting empty swing, they call out their own friends and give it to them for their grown up normal child when there is an other line of swings for them. Poor Zahra and Ammar keep going toward and want the swings. It was really painful but i guess over the years dealing with that kind of stuff, i get strong and learn to let it go with smile. Bilal had a good time just running and chasing kids. Ammar run around from one place to other being in his own world and totally ignoring the all surroundings. Zahra love giving hugs and she tried to give her hug to ladies there but they was not so friendly and step back. Finally we were able to get one swing and it was getting dark so i was able to give Ammar and Zahra few push.
Coming back was not happy ending since Bilal made his sad face, he don't want to leave and same with Ammar. I had to drag Ammar out of there with pushing two strollers and holding Zahra's hand. I am sure i must be famous there by a crazy lady between all the ladies was staring at me.

We all are tested here with health as well as sickness. A man with good eyesight is tested with regards to his use of it. Will he use the blessing of his sight to good purpose or to gaze at unlawful things? His good eyesight may be what takes him to Hell. A blind man is tested whether he will bear patiently with his disability. His patience in affliction may be what earns him his place in Paradise. Our goal is the Hereafter and we are all being tested.
Allah says: “It is He who created death and life that He may try you as to which of you is best in deeds.” [Sûrah al-Mulk: 2]


Friday, October 24, 2008 11:12 PM CDT

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October 28th is Ammar's birthday. He is going to be 5 years old. I can't believe he is grown so big already. Also we have his IEP meeting which i know going be horrible. When he diagnose with Autism, Dr. said it is going to be ok with therapies and he will be talking fine by age five. Please pray that i make the day with out crying.

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I am sorry for not updating here in some time. These days, finding a time become really hard. I am struggling to keep up with the Kids, house, husband and business. Some times it feel like that time have shrunk. I can't do all need to be done and leaving it for tomorrow never get done. I have tons and tons of paper work to fill out for school and for Drs.

Abeerah had a seizure two nights ago during her sleep. It was 1:30AM and i was in my room trying to make Ammar to go to sleep. I heard Abeerah gasping for air on the intercom and ran to her. It lasted for 3 minutes after i got there and after she fall a sleep. Last two days she is not her self and having a hard time to sit her own. Sleeping a lot more. Breathing heavy while sleeping and drooling non stop and as soon as she wakes up, she choke terribly. She missed school for 3 days. I hope she get better over the weekend.

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Khansa is not doing well lately. She is happy and smiling and next minute she cry out loud for hour. I am not understanding what is bothering her. All the things i can think of is or according to my check list, nothing is believe bothering her. I only wish she could talk for a minute to tell me or if only she can sign it. I start her on seraquil(behavioral medication) and it seems help her a little for sleeping because she was not sleeping for some times. She do not want to lay down at all and she sleeps sitting down. And that is painful for her back which is already formed in arch shape.

Zahra is doing good. She is being really cute these days. Smiles, laughs and dance around. Oh she is such a sweet little girl. Her giggles make me smile. I love her hugs but it is only for few seconds then she will push you away. And watch out her pinching when she come close. That is her way of loving you. She spend hours and hours jumping on her mini trampoline while looking her self in the mirror. She had two incident choking bad on her food while eating which was just a soft oatmeal and i am getting to worried on that.

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Bilal visited ER with bloody head last Thursday. He fall in the bus coming from school. He was standing in the bus when bus stop suddenly and he flew to the front hit the seat corner and fell back ward and hit his head on a metal. In ER they clean and staple the cut. I grab my heart My heart when i saw him with bloody head coming from school since my MOM had died with falling on her head and having a head injury at the same place like Bilal. She had internal bleeding after even Dr. did the stitches on her head. Stay on safe side, I wanted to get the X-ray and CT scan done but Dr. talk me out of it since he is a child and there is not much chances of internal bleeding in children. Bilal is doing better now but complain of head aches some times. yesterday i took him back to ER and got those staples removed. Now i have to fill a lot of papers for the school which they just thought the need of it after this incident some about the parents repressibility and rules of riding the bus and stuff.
I am just praying hard each day for Bilal. His attention have lot of issues. I talk to one of the dr. in kids pediatrician group on our last visit and she think he need to be tested for ADHD and need to talk to our main Dr.
We attend in his school parent teacher school night and all the teachers have a same issue that he is not completing his homework. They are very strict about the home work and 25arks are from the home work. I spend hours each day with him after school to make him do his home work when most of the time he have no idea if he have any home work. And then he leaves the done home work at home. i really have to stay on top of his each matter. From brushing his teeth to making his bag ready or even dressing him and all his little needs. I get really sad when it comes to him and worried about him.

Ammar's school issues making me and Zarrar about to loose our minds. I am so frustrated with his progress in lack of therapies at school. Ammar deserve a better education and more than twice a week therapy. Kids with difficulty saying just a "S" letter properly getting more than twice a therapy. And Ammar is Autistic. He have no language and increasing behavior issues. Teaneck have given us more than enough hard time. Case workers should be on your side and provide you what best for your child but here comes Ammar's case worker who just keep defending the district in trying to save their money. Now we came to the point where we should move from Teaneck or get a great lawyer to fight.

With all the lifting, my shoulder is in lot of pain and each time i move my arms, i can hear a clicking sound. Abeerah have gain more weight and starting to slips through my arms when carrying her upstairs to the bath room. I have brought her bed downstairs and she been sleeping there for some time now which i am not happy about. I make several trips at night to check on her and keep my intercom on loud for any chocking or coughing sounds. Always scared if i can't able to reach her on time.

Thank you all for your prayers and support. We need them so much these days. Please keep it up. I can not pay you back for your support but I know for sure that ALLAH will reward you 10 time more in return in this life and after. InshaAllah.





Friday, October 10, 2008 11:22 AM CDT

Quick update. OCTOBER 11th.

Waiting for kids to come home from school yesterday and i have to hold my heart receiving a call from Hackensack police that "we are here standing in middle of Route 80 with a school bus and these 3 special girls are yours?"
Then police said they are taking Khansa to the hospital since she had a seizure in the bus on her way home. Khansa did not had a seizure before. Zarrar who was going to pick Bilal up, left for the hospital. I pick up Bilal and then waited for the other girls to come home. They reach home 5:30. The way bus driver described seems she did had a seizure but i got a call from the ambulace after examine khansa on the road and they told me she is very alert right now and after having seizure it is not that common specially the first time seizure. He said she throw up and choked and her movements and twitching of the eyes and throwing her self to the side was in trying to get some air while chocking. After girls( Zahra and Abeerah) get home and i done changing their diapers and make them comfortable. Call the baby sitter. My cousin was here so i left kids with her since Zarrar was keep calling for each little thing Drs. was asking about khansa like what is her birth date????????Men......
When i reach to the hospital, they discharge Khansa since she was doing ok. Still no one can figure out what really happened in the bus. Zarrar thinks which i been trying to explain to the bus driver before, that in the morning girls goes to school and in the morning is very cold and i dress them with layers but in the evening since it is warm the should not come home with their jackets on and on top blasting heat so driver can be comfortable wearing t shirt and shorts. I think it got too hot and khansa threw up and fainted. We are keeping a close eye on her if any further symptoms of seizure or any thing i see. But for sure i am up to fighting for an other aid and a nurse in the bus for my girls.

My eyes started to twitch noticeable since the police called about khansa going to the hospital. We were invited for a wedding yesterday and since i was not sure how khansa is feeling after get home, i canceled it but later my cousin and both mother daughter baby sitters push us to go. So me and Zarrar went and had a great couple of hours and that helped to put my worry a side and my eye twitching stopped. That is the second time happened to me. First time happened when i lost my father.
Today i find lot of bruces on her legs and on her arms. That bring a lot of questions in my head.

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Abeerah recover so well after having two seizures in same night which i was so worried about after seizure symptoms which she been having for each time she had a seizure for long time. It always took her at least two days to get back to her self. Specially last month seizure left her shaking for days and not able to move her own. She never fully recover from that still. But i am happy and thankful for all of nice people out there praying for her. She is looking around and being her usual self but her coughing is gotten worse. Last night she gage so much that i though of going to ER in middle of the night. I am not sure this coughing is due to throat trouble which i am dealing with or due to reflux. She aspirate more at night time. I get really scared at night and not happy the way things turn for her at night being so uncomfortable. But she is much better in the day time and able to go to school and do great in school. I want to speak to her Dr about her coughing at night but unfortunately, i have lost my voice last 2 days due to throat trouble. I know Bial is having a good time with that since no yelling for home work or asking him for help with Ammar. Taking Antibiotic now and hopefully get back my voice soon.

Zahra and khansa are doing very well lately and being so cute. Lots of smiles and happy moments with them. I love and truly enjoy hugging, playing and dressing them. I am so blessed for these sweet moments. Get sad inside for thinking of the future but other hand getting lots of happy tears for now.

Ammar been Ammar... too much to handel but cute like a button. His sleeping trouble really gives me hard time at night. I have to unscrew the lights so he is unable to turn lights on at night but that little man walks around in a dark with out having any fear. He throw down any thing comes in his way so tons of mess to pick up left for me to keep me busy while he is in school. I really praying hard for his improvement.
Bilal is doing well. He had a great field day to museum park. He ask me why don't we go to places like that. His attention is getting better in school and with home work. He got A on his last tests. I hope things continue to stay smooth with him. Ameen. My cousin is here living with us for a week for her job in NY. She Also helping Bilal with his homework which is a huge help.

Please continue to pray for my family. Your support is really appreciated here. We are making our each day only with your support and prayers and HIS blessing.
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Wednesday, October 8, 2008 12:57 AM CDT

Need your prayers.

Abeerah is not doing well. She had a seizure last night at 11pm which lasted 4 minutes. She had a lot of mucus in her mouth and she had trouble breathing during that time. When shacking got slower down then i suction her mouth, there was formula and the meds she took hours ago in her mouth which was making her gage and choke. I believe her reflux gotten worst then before. Last entire week her breathing been funny and she gage and aspirating a lot. during night time. Her breathing sound strange and i have to stay beside her at night.

Abeerah had another seizure at 4am this morning. After the seizure last night, i brought her in my room. She stay sleeping tight but foamy liquid continue to come through her one side of the mouth. Middle of the night, I woke up with feeling of shaking of my bed and then i heard Abeerah gasping for air. I hold her down quickly to make her sit and it was so heart breaking to watch your child going through this awful thing. After 4 minutes pass by watching her shaking and trying to breath, I felt it is not ending so i ran down stairs faster than i ever did and give her the med in her rectum to stop the seizure, which stop the seizure within seconds. Same like last night whole a lot of liquid flying out of her mouth which coughing up to prevent the liquid from going in her airways. She fall a sleep after that. I hope there is no more seizures for my poor baby and she recover fast from this. Ameen


Sunday, September 28, 2008 7:52 AM CDT


Sunday, September 28
QUICK UPDATE.
Saturday morning, every one woke up with fever when all were alright till last night. I call Zarrar to tell him that kids are not well and first thing he told me that he do not feel too good. From Bilal and Zarrar, i know their throat was bothering them. I went to the musjid and find out so many other feeling the same way and there is virus is going around. Keeping up with the clock for their medication, all felt ok but Abeerah fever reached to 104 by night. she been gurgling and gagging a lot all day and almost all night. I try to keep the fever down. At night i tried the cool gel strips placing on her forehead to keep her cool. She was so burning hot and red that she looks like a tomato. I been so scared of listening her heavy breathing and aspirating. Thank Allah, Now her fever reduce to 101. I hope it goes down to normal and she feels better soon. Please keep her in your prayers. I will be taking her to the hospital if fever satyed the same.

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Tuesday, September 30th
Thank you for all of your prayers. Things are well here now. Kids are doing ok now. Abeerah is doing much better. Thankfully, her fever broke and all the gagging stopped after two bad days and now she is happy and looks active again. I am very very thankful for this blessing that we did not to admit her in the hospital.
Ramadan's almost over and just couple of more days have left. Can not believe the whole month already passed. May Allah accept ours and yours struggle in this month. Ameen.

I am so happy to tell you that yours and mine prayers did answered with the blessing of Ramadan. One of my old helper(Lilly) who helped me couple of years when girls was just diagnosed. She came back. She and her daughter comes to give me hand in the evenings. She said she cannot do it alone since it is a lot to handle. Now i have help for laundry and i can not tell you how big relief is that. Its like a some one took a huge rock from my shoulders. Thank GOD.

I need your prayers for Ammar. His behavior is changing so much and really make me upset to see. He don't take "NO" for any thing. He gets in to tantrums and gets really loud and wild. He throws every thing comes in his way and bite who ever comes in front. I am unable to hold him down when he is like that and feel helpless. Please pray.

Kids are off here for two days for jewish holiday. Since Eid is in two days and weather will be nice, I hope, i can able to take them out for EID prayer.

Sending every one a EID MUBARK in advance.


Sunday, September 21, 2008 2:43 AM CDT

Allhamdulillah(all praise to Allah) Things are going well here now after couple of hard days due to my own health. It all started on last Friday when i was taking Bilal for his Uniform, school supplies and shoe shopping since he was going to a new school. While driving, i started to have blurred vision. Couple of time i find my self passing out so i head home. That day and couple of next days, i experience migraine head ache, No vision ahead 2 feet, Stiffness and pain in back of my neck, unable speak or able to make sentence, Fatigue and so much of weakness that could not hold any thing in my hands. I just lay around my kids and drag myself to change their diapers and taking care of their needs. I feel really sad for my children who need my constant care. Felt very emotional. Start the search on the net to find out what is going on. It stated several places that is anxiety and it happens with overwhelming stress and lake of vitamins( i know i should be yelled at on this one).
Well start myself on vitamins and with some sleep, got some strength back to stand up again. Zarrar wants me to get out the house for little while and go with him for eid Community dinner. I spend hours looking for the baby sitter. One old helper i had couple of years ago came with her daughter for baby sitting and i went out. Dinner was great and listen to some politician's speeches and meet lot of people. Zarrar was right, It did helped me a lot with all the head ache and stuff. Still i get in to those terrible moments time to time. Getting tired very quickly and on any thing i take hard on me, it trigger the migraine head ache. which is very ugly to deal with when i am fasting too.
This week went very busy with kids stuff again. me and Zarrar been running crazy this week with so many school appointments, meetings, Dr. appointments for missing shots to physicals, Bus troubles to teachers meeting and much much more. Now things with schools starting to settle down little. We have a busy schedule in the morning. My day starts at 6:30 am from Bilal. After i make him ready and send him out the door, Zarrar drive him to 7 minute away to his bus stop. As long Zarrar can come from work in the morning before 7 am, things will go great. other wise it will be difficult to do all my own. Zarrar drive Bilal to the bus stop. After sending Bilal, i make girls ready one by one. Their bus comes 7:30 and then Ammar's turn. Ammar bus arrives 7:55AM. By 8AM i am done with kids but these 2 hours left me breathless since there is lot of lifting and struggle involve.

Girls are doing well these days.
Abeerah's movements turn very limited since her last seizure. She hardly sit without having support and sleep a lot more. She stay the same where i left her and need my help to change her positions. She have gain more weight. She is much calmer and relax these days and that is so much fun to be around her. She aspirate at night but it is lot less these days. Thank GOD for that.

Khansa also gained 3 lb. and now 52lb lady. Taking care is quite harder since she fight or bite when i try to touch her. Bathing is not fun since she cry the entire time and same with diaper changing or brushing teeth.

Zahra. what can i tell you. Poor girl going through lot of changing these days. She take her left hand to grab her back and do not know how to bring it back then she cry. It happens every 5 minutes. So sad how this MPS taking over her.

Ammar, no matter how much i write on him, it will not explain all about him because he is too much boy. Our last meeting with Ammar's case worker went really ugly. They do not want to hear a thing about changing his school. He miss 8 days in last OCT since he was sick and we took a week vacation for disney that stand a huge case that he miss school that is why he did not improve. GIVE ME A BREAK. Zarrar got so frustrated that he left in between the meeting because case worker did not let us speak. For all our concern, worries and frustrations.....her answer was "due to he miss school such a such days".....UGH

Bilal...like always, on 3rd day to new school got in trouble in the bus. All kids making noises and hitting each other in the way home but next day only Bilal who admit front of principle that yes he was involve. My sweet boy...at least he is truthful. He is having a little difficulty adjusting to new school and new rules. Specially with the home work part, changing class rooms and what to leave in the locker and what not. I know it will take him some time to get in to routine. My a lot of time spending with him to help him with his homework.

Ramadan is going well here. Only 1/3 left now. I have not able to go to musjid for trawee(night prayers) this year since Ammar makes too much noise there and i do not have any one to watch him home. I really missing that part.
We are in extreme need of your prayers. Please keep us in your prayers.


Friday, September 12, 2008 3:06 AM CDT

Ramadan is going very well here. Allahmdulillah, Me, Zarrar and Bilal are keeping all our fasts. We are loving our time of Saher and time of iftar.
Past week went very busy here. So much to face since Ramadan, Schools and house trouble all started at once. Some times having a hard day, you calm your self thinking that it can't get any worse than that but then all of sudden it does. We had a busy and terrible last weekend which put me in to a panic situation. After we had main water pipe leakage problem and then changing of the lead pipes issue taken care off. We got busy in cooking for a big gathering. Every first Friday of Ramadan is booked for Zarrar and my entire in laws family turn for the Iftar(opening the fast). Zarrar's parents use to do it and now kids keep it going. Iftar went great. 300 people enjoy eating our cooking. 2 days straight i cook my part of the cooking and i am so happy that every thing came out great. May Allah accept our efforts. Ameen.
During this water trouble and then cooking for Iftar, i have not had the laundry done for over week and had a huge pile of laundry in the basement. Saturday i went down and separate clothes by colors and stuff spreading out on the floor. We had a huge storm and heavy rain that afternoon. First girls room starting to leak from two places and i put buckets to catch it then the hole in the basement wall which left there after drilling for the new pipes started pouring water like a water fall in to the basement and that was full of mud. I got panic grabbing the laundry from the mud water. Zarrar was not home and i tried every way to stop the water from coming in by pushing any thing i can find in to the hole but water pressure was fast and it starting to rise in the basement way to fast. Our basement was full of stuff. Zarrar's office stuff, all our business stuff, electronics and all the storage stuff. I started to fill buckets and throw out the window spilling mostly on myself a thick muddy water. Long story short here that we struggle for hours to take the water out the basement. In all panic and stuff but Zarrar was able to close the hole. After we did big time cleaning and some property damage as well.
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This Hadith teach me a lot at times like this so i would like to share with you.
The rusulullah [saw]has said ;Ramadhan is the month of patience, hence ,even if great difficulty is experienced in fasting ,one should bear it cheerfully with patience one should not complain as people are wont to do during the hot summer days,if sheri is missed one should not complain,should we feel fatigued at the time of taraweeh,this too should be borne with fortitude ,do not concider it a great imposition or trial;otherwise these performances may lose it credit with Allah [swt],when we turn our backs to the worldly comforts,forsake our eating and drinking for the sake of livelihood ;then in comparison with Allah [swt']pleasures what are these difficulties?

Kids school started from 4th but we had a problem with the new bus company. They won't take the girls in their wheel chair. They said they was not told and then on top our case worker call and tell me that is not in their IEP. Its been 2 years since Abeerah been going in her stroller and Khansa from last year. And we did talk about it in the IEP. How could they say that. Two days in a row, i made girls ready for school in the morning but no bus coming to pick them up and no answers either. Third day we drop them off to school our self and Zarrar get on calling and writing letters. And finally we got bus with access of wheel chairs lift. But i am still mad and scared sending my 3 handicap daughters in the bus with only one aid in it and she never dealt with any special need kid before and she do not even know what seizure is and what to do if seizure happens to Abeerah. Now i have to work on getting another aid in the bus with some experience.

We also been working on placing Bilal in to new School. He wants to go to the school where his friends from The Musjid goes. Monday we took him and they require a test. Bilal send in a room with the test and i had very nervous 2 hours in waiting room. Since he did some home schooling, join Musjid for hifiz and the back to home schooling. Big test of my teaching last year. I am so glad and proud of him doing very well in his test and accepted in that school. Now we are facing the huge financial stuff of that private school registrations, school fee and transportation cost. But In other side Bilal is very exited and happy to be part of that school. I hope he do well there and find all the support he needs in all the social and academic areas. Ameen. Friday will be his first day to school.

I had to cancel Ammar's meeting with his case worker and reschedule on Monday since we were busy in so many other appointments. I want to give full attention to his education since i been over stressed with his limited therapies and not getting enough help which making him going in to disturbing behavior issues. I can use all your prayers for this to able to resolve this.

Abeerah and Khansa are doing very well other than Abeerah's some aspirating at night. Zahra breaking me in to tears these days. My princess started to have stiffness issue. Her joints starting to get lock on her. Unable to stand up her self and cramps in feet and arms. Poor baby looks at me with her wide crying eyes and winning to me when i message her during the cramps, which can melt any heart and i am just a mother.
I bought her a mini trampoline and put it in her room which she is loving it a lot.
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Finally after a some hard work and all day work Zarrar finished our walk way in front of the house. Some neighbor came to give Zarrar a hand and some to give a company. It looks really beautiful.
But still wheel chairs do not get on it since it is high from the road.
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Zarrar is enjoying his new hobby of ridding his bike these days. I am scared to death when he goes out for a ride on it but there i am happy he can do some thing he enjoys since he is under a huge pressure these ays.
Please continue us in your prayers. Since girls are in their terrible disease's final stage and entering in the pain full stage, Only your support and prayers can help us go through this.


Tuesday, September 2, 2008 11:02 PM CDT

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Today we marks the beginning of the Holy month of Ramadan. Another year has passed and this time around we all should make a Ramadan worth while!
To those who don't know about Ramadan.....Ramadan is an islamic month. It is the chief of all months and the most glorious one. Ramadan is the month of fasting, intensive prayer, sacrifice and Divine worship. It is not just keeping your self from food and water, but as explained by the Holy Prophet (S.A.W.), exercises strict control over his tongue, eyes, ears, thoughts and deeds and does everything possible to seek the pleasure of Allah (SWT)

Girls been doing well lately and i am very very thankful for that. Only worries me that Abeerah been sleeping whole a lot. She sleep most of the day and awake only for few hours these days. I decreased her medication(seraquil) to see if that is not the case but have not seen much difference in her sleep.

Ammar school is starting from tomorrow. I been trying hard to make his schedule for sleeping sleep at night for going to school but he is very wild at night. He doesn't sleep at night. It is really break my heart watching him going through strange behaviors which i do not have any answers for. I been reading books about Autism and finding stuff for him online to help his issues every time i get. Please pray for him specially during this month when all prayers do come true.

Girls still have one more day of vacation left. I am sad to know that they are not going to have same bus driver and aids this year which we had for last 2 years. They been really nice to us. District changed the bus company this year. I hope new crew is as understanding and loving as the old one were. So one more day i am going to relax with my daughters before crazy schedule of making 5 kids ready before 7:30 in the morning start.

Our water leakage issue turn a big head ache. Zarrar dig the entire area to remove the old lead pipes but due to long weekend, It is just did not went as planed. One plumber comes and other goes. Some could not understand to fix it since it is old pipes. Water shut down with out notice for whole day and then given back but with the fear of going again. Since front of the house is left with big hole for whole week, Taking the kids out been really hard. Keeping Ammar away from it an other story. House been really dirty with all the dirt come in. Not having a flowing water when ever you want it makes me thankful for the running water blessing we have. I know many areas in the world, people don't have enough water and some have to travel each day to get water for their daily use.
Finally Zarrar find a great plumber who was able to finish the work without leaving in between and from 8:p.m. today we are back with running water. I am so so happy and thankful. Finally i will be able to give kids a bath. Now we have to fill the hole in front yard.
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Zarrar's cousin visit us from Canada. It was really nice having her over.

Zarrar and i took the kids to sight the Ramadan moon on 31st of August. Zarrar's family came to join us there but even looking with binoculars and on a clear sky, no one was able to spot it. We went out next day and after a little struggle, we all saw the moon. we hardly able to see a very very thin moon and i don't understand how people start Ramadan 2 days earlier. I tried to take pictures but it was so thin that keep disappearing on us and i could not catch it in the picture. We all make prayer for forgiveness and lot of blessing in this month. Starting a month with sighting the moon is a lot of blessing and also a great pleasure to keep a Sunnah alive.
Prophet(pbuh) said in a hadith "The best of Allah's servants are those who observe the new moons and shadows as a way of remembering Allah." (related by Imam al-Hakim,)
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Wednesday, August 27, 2008 3:43 AM CDT

Its been over a week since kids been not doing too well here. Weather changing making every one taking turns to get sick. Ammar and Zahra did their share and then i got sick. My throat got infected and i am taking antibiotics for that. This sickness and bad cough drained all my energy and on top Ammar been very very hyper and cranky and just wanted me to hold him all day. If i try to put him down or try to step away for him, He just get in to tantrums and bang his head hard on any thing front of him and get seriously hurt himself. That made things quite difficult for me to take care. Abeerah still not recover 100 from her last seizure. She wants to stay in bed and do not like to sit at all this entire week. Each time i move her from one place to other, she looks very uncomfortable. She is not roaming around the room like she use too or talk in her cute way and at night, she do not take a turn by her self and stay in same position like i left her. Aspirating a lot these days which gets worst at night. Since yesterday, her condition got worst and i believe she had an other seizure during sleep which i did not hear and she been down all day with head thrown a side and foaming kind of drool coming from the mouth. More likely very sleepy but eyes looks fine and in place and she is not shaking like she usually does after having a seizures. It could be a mild one. My heart hurts when ever i look at her. Please pray that she recover fast from this and get back to her self.

Still have not find any one for help here. Kids are home and tons of non stop work here. Trying to get rid of our mountain made with laundry really keeping me up and down the basement. Washing and drying, i am keep it going OK but when it comes to fold and put it away, i am so lazy about it. I dump all the wash laundry on my bed so i had to fold it before going to sleep but i always reach to my bedroom tired after having a long day and end up just sleeping tightly beside the laundry. Kids schools are going to start again from September 4th and i have not shop any thing yet. Kids' old clothing and school bags are worn out and need to get them at least some new outfits. But i guess that will happen once they start a school.
I been really worried for Ammar. He having some behavior issues which i am really concern. At night he is out of control, run non stop for hours from one corner to other in the room with strange sounds and laughs. My heart feel sinking deeper as much i think of him. My hopes for him some time really feels are fading away as he growing big.
All these trials i am surrounded by from every direction and i need more strength to to deal with them.

Jawad, A little boy who i mentioned here before visited us with his father. He came last year from Pakistan for treatment here. When i first saw him, he could not even hold his head and keep in banging his head to the ground. But this time he was able to stand up. He been making a great progress with therapies and medication. I am so happy for him. I baby sit him for twice this week and i was so amazed to see his improvement. It makes me really sad thinking of my own kids that in USA people comes from every were for medical treatments and find help for their kids. Every day we read stories about people and kids find a cure in USA and here my 4 American kids have no help neither treatment available for them. I just have to watch them deteriorate. But then my faith holds me togather and i know all things comes from GOD and he knows what is going on and what is best for me. If he wants my kids to be cured then nothing will stop that. So only thing i can do is pray to HIM.

This weekend we had a water disaster here. Our basement been keep flooding for some time and Zarrar been so worried about it and constantly keep pumping the water out. The water started to keep rising. As much we pump it out double the amount comes back. Long story short, it came to the end that there is some leak. To dig to find the leak and repair estimated $3000.00 and no one could do before Monday. Saturday Zarrar started to dig and dig and dig. Any where he dig a foot, he find water and mud. He been so worried that our house could sink in the ground. By sunday night our whole front yard dug out and concrete side walk removed and find the leak. Water company came and shut the main water. We had no water for over a day. I realized how much we need a water with 5 kids especially with Ammar who always putting his hands in to some thing. I also realized how many times i wash my hands a day changing 4 kids diapers. We find out the pipes are 100 years old and it made out of lead which is not safe. Zarrar fix the leak for now and water turn back on. Thank GOD. Now water company wants us to change the pipes and which means need to dig some more. Its been a disaster here. Tired and aching body husband who dug 2 days straight. No way to walk through front gate and dirt and mud all over the house.




Please keep my family in your prayers.


Sunday, August 17, 2008 0:53 AM CDT

I am sorry for not updating more often here these days. With Kids been home, day fly by really quick. Abeerah had a seizure on Monday which left her in a horrible condition and it took 3 days to get her back to her self again, able to hold her head her own and able to sit down with out support and able to look at me and smile. I am thankful to get her back. Dealing with seizure it self a horrible thing to watch happening to your child and after seizure that recovery time is another rough time on parents to deal with. Please pray for "NO MORE SEIZURES" .

When Abeerah is her self and happy, it is really fun to be with her. She is like a 8 months old baby who laugh and giggle when you smile at her. Shy when you look at her. Her eyes follow you around when i am working around her and she keeps trying to grab me. She always keep trying to stand up. She enjoy her bath times and play with the water trying to grab the water and bubbles. I really love having her moments like that. Our house runs around on kids health. If kids are happy then every thing seems great here but if kids are not well, all seems upside down. Specially Zarrar's mood is so much goes with Abeerah's health. when she is down, it makes zarrar tense and frustrated.

Last Saturday we were able to make it to south Jersey to Hall's family house where they held a pool party for some MPS families. Due to good weather and all the traffic, it took us 3 and half hour to reach there.
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Happy to meet them all. Bilal really enjoy the time in the pool. Food was great and it was nice spending some time with families who came close to us dealing with same issues with MPS. Girls did well. Ammar was little too exited to see their fish tank and keep circling around it. I was little worried each time stepping away since he is known in our house as a fish killer (If you been following the journal last year then you must know why).
Zahra was happy and she did her clapping and dancing thing and attract boys around her. Funny thing when Jesse(MPS) hold her hand and Xavier(Autistic) and Mikanos(MPS) got upset. They were calling Jesse to stop holding their girl's hand and then they call their MOM and ask her if they can take Zahra home with them. So cute.
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Sheryl lit the candles on the cake and sing happy Birthday to Bilal. That was so nice of her and Bilal got really happy.
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We reach home late and next morning i woke up early and started to prepare for 40 people that we invited at our house Sunday evening. Our neighbor just came back from hospital after her both side hip replacement surgery so we gave her a "Get Well Soon" party and invited all the close neighbors and Zarrar's family. It was Bilal's birthday too so he was very exited. It was a crazy crazy day fro me. Bilal(my only help) went with his uncle to the movie. Zarrar took care the out door cleaning and i was taking care the kids, went grocery shopping for all needed stuff and I made tons of dishes all in a very short time with out help. Party went great but not all invited people came. Kind of disappointed. How sad it is that you can't support an old lady but we had a great time in all.

Tuesday, All Girls had dental appointment. since Abeerah was not her self so i took Zahra and khansa to the dentist. some minor filling and cleaning, all looks fine. Holding down Khansa was not easy. She do not like any one touch her. She bit the Dr. couple of times.

Dr. Jackson said that too much drooling is part of their metabolism issues not dental at this point.

Thursday we had a visit from Noor-ul-Iman school students and parents. It was another great evening spended with beautiful young people. We are very thankful for Noor-ul-Iman school for all their support this year. Their friendship made a great difference in our life.

Friday- I try to give Ammar a hair cut. Oh man! what a adventure it turn to be. With all his jumps and non stop movements, i end up making him complete bald. He been keep looking himself in the mirror and upset not seeing his hair. Poor baby.

Saturday - Zahra was very hyper and looks very upset. I tried all i can think of it to calm her down. I hope she feels better by tomorrow.
Please keep our family in your prayers.

PhotobucketAugust 18th is our wedding anniversary. Its been 17 years since we been married. MashaAllah. May Allah keep our love strong and keep us healthy. ameen


Friday, August 8, 2008 10:52 PM CDT

August 11th
Abeerah had an other seizure this evening. She was in kind of half sleep and resting on the carpet. It was about 3 minute long. But after that she kept shacking for while and then fall a sleep. I try to wake her up after 3 hours but she stay in deep sleep and time to time cough it up chocking on her saliva. I am keeping her on her side. Please pray for her to recover from horrible after seizure stuff and be her self soon. Amen.

I will update soon about our visit to South Jersey and meeting all MPS families and all about Bilal's birthday.

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August 8th
Zahra and i am having a flue/bad allergies for last two days. It is just feel really nasty and feel like all my strength is drained away. Without being my self, all is a mess here.

Bilal"s birthday is just couple of days away. it is on August 10th and he been counting the days and also reminding every one that how many days have left for him to be 9 years old.

We are invited on Saturday by one of MPS parents for a MPS family gathering at their house. Their Daughter name is Julie and she is 13 years old. Last year i missed it but i am hoping to make it this year. I hope we all feel well by tomorrow. Ameen

Allhamdulillah (All praise to The LORD), Girls are doing well these days. Their summer program ended 31st of July and now they are home having their summer break till september 1st. Yes, i am so busy here that i don't even have time to even comb my hair. Their routine these days is pretty flexible. Zahra and Abeerah sleep late but Khansa wake up early as always. Day start from breakfast then they relax in their play room and watch TV. Rest of the day just pass between diaper changing feeding, playing with them and some time taking them in the yard if weather is in 80s. There is not much to do for them out side these days. Jumping on trampoline been Zahra's favorite thing to do and she always go straight to the trampoline when she is out side but now she jump little and mostly sit on the trampoline. The day i have more strength, i take them on the swings. Abeerah love swinging. Some reason Zahra and Khansa are drooling way too much. I think it could be some issue with dental or teething. I had made an appointment with Dr. Jackson for all three girls to check it out. keeping them clean and dry from the drooling wetness, they go through quite of changing clothes and towels all day. My laundry is just never seems to be close to ending. I still have not find any one for help. Francy, A lady who i was counting on also find some other job. I am unable to step out side the house for any thing. Specially unable to go for grocery shopping which cause frustration when all needed stuff is all out.
Ammar is still going for his summer program but only for 3 hours. A new therapist started to come home for Ammar for ABA therapy for him. I hope this can help him with his speech. He loves out door and can't let any chance pass when he can sneak out side and play with dirt. He is very energetic and full of life. He still having a huge issues sleeping at night. He is starting to get more interesting in books and like to watch different movies than he use to watch only dora or blues clues over and over and over again. As hard to handle boy he is as much he is cute too. He is total joy in our life. Since all girls quite down, He is filling in all the noise around here. If he is in school or sleeping, Things do not feel right. Zarrar really adore him.

Khansa is still the same. She is taking extra calories and liquid through G tube. She have not gain any weight yet but i see little life is coming back in her and she looks around and giving her great eye contact but still cry each time i touch her in taking care of her. It seems like she is suffering with pain in her joints or bones. She have not smile in a very long time. She do not move her own. She get bed sores and needed to move her position constantly.

Bilal is doing home study these days he is doing wonderful with his behavior. He helps me a lot and if he is in good mood, he play with his brother. Some times he shares with me his sadness of his siblings not talking and play with him like his friend's sibling does and that really hurt me deep. Only thing i can tell him that is how GOD wanted to be and he just keep praying for them, May be his prayers reach HIM and he can change things with his siblings. He learned to ride the bike and enjoying a lot riding on the road with other neighbor's kids. I caught him doing some stunts on the bike, make me really scared. But thats Bilal, who is fear less and loves to collect attention.

Lately things been going good with girls. Other than swallowing down the pain i have to face watching them getting limited with their abilities, i am enjoying the time with my beautiful angels. I want to say thank you to all of you for your support and prayers to making us through our trail. As hard this road been emotionally and physically as much i am thinking and realizing our purpose here. These hardships had open my eyes and teach me so much about life. I can starting to understand how GOD made this world and how every thing works here. I know he made my special babies for some purpose and look down on earth for their care and He choose me for that. I feel blessed to have them in my life. To me, spite all the hardships it brings in every directions , at same time it is pleasure to have them and love them and do care for. I just tell my self facing a hard day that GOD think of me capable and strong to do his work, otherwise he would not choose me to give me 4 special need children. That give me a strength and give me the will to hide my pain and go on with a smile knowing he is watching over me and his reward will be really great.


Friday, July 25, 2008 1:53 AM CDT

Thank you all for your support and prayers. Your Kind messages in our guest book, means a lot to us. Everyone is doing alright here and life is busy keeping up with 5 kids' needs. Time is like flying little faster these days. Night falls before i could able to finish every thing. Now since i have no help these days, house work is overwhelmed.
Last weekend zarrar was off so we decided to take a trip which i wanted to do since the summer started. We had a great weekend. We were invited by my sister in law to Pennsylvania to their vacation home and some one said PENNSYLVANIA, I am defiantly going. I love that beautiful state. We left on Friday night and spend whole Saturday there and drove back home on sunday afternoon. Girls did really well there. I am SO THANKFUL for that. We had tons of fun going out and doing things. We done some things that we have not done in years or never done before. Me, Zarrar and Bilal went for horse back riding while My sister in law and her husband sat in the car with the girls. Then zarrar and i race the GO CARS. At home I went for treasure hunt with kids in the huge woods in their back yards. WE saw a cave and we all thought of bear so we ran home without finding any thing. I enjoyed the scenery there and loved going for walk in such a beautiful and peaceful place. Other than running after Ammar and irritating on no AC in the van, We all had a great time.
My camera broke from our trip to the camp so sorry about no more pictures to share other than the picture on top taken from my cell phone.

Khansa's one tooth was loose and causing a lot of bleeding and discomfort to her so i pulled that out (i am good at it). New tooth was fully out under it. She bleed little and was fine after that. Since she had a habit of chewing her fingers and digging in to her teeth with her fingers, She came from school with bloody mouth. I clean but every minute later she dig more and bleed all over again. I put braces on her arms to keep her hand out of her mouth. In the morning when i went to wake her up for school, i got scared to see her whole bed and clothes were covered in blood. She was able to take her hand out of the braces and dig in her mouth all night. I could not able to stop the bleeding after and lots of blood clots scared me so end up in Dr. Jackson's office. He said, Since new tooth grown under the old one and some nerves still left alive and it will take some time to heal. He said, he can't do any thing to stop the bleeding and clots are normal and it will heal its own. He suggested to keep her fingers out of her mouth keeping the braces on. She bleed till that evening but thank GOD it stopped finally. Now i just have to wash her tons of bloody shirts and bed sheets.

Please keep praying for my family.



Friday, July 18, 2008 3:18 PM CDT

Things are here going very well and i am so great full for that. Girls are doing well these days and since this house revolves around them, every thing seems great these days. When they are happy, we all are happy. May Allah continue giving us great days here. Ameen.
After couple of very hard days with the new treatment Abeerah's belly around her G-tube healed good. Now there is no leakage from the stomach coming out for now. Dr. Alexander said with monthly treatment like this, she can go with the same g tube couple of more months with out the surgery. YAYYYY

Last Sunday 2 families visited us from Noor-ul-Iman school. It was really great spending time with beautiful loving people. Also my sister came over from Indiana with her husband, one daughter and her in-laws. I have not seen my sister in 3 years and she been gone through so much in past some years so it was great having her over. We sister had a great time chatting and my niece ANNA was so much help with the girls. It was a very busy week.
Bilal caught a fever since Monday morning and spend some days in bed with high fever. He was very sad that his favorite cousin was over and he could not play with her.
LIke you know, Carroll been with us for some months helping me with kids and house work. She been a great help but she gave her one week notice and came sunday for her last day for babysitting. She is going back to school to study and can't work any more. I am thankful for her for all the help she gave me and sad on her leaving us. Now i am back again in looking for some one for help.

Girls and Ammar are going to summer school but not making to school every day. I am physically worn out these days. My arms hurts a lot with all the lifting and seems giving up on me. Summer time is very busy time. Extra baths for the girls and carrying them in the back yard in the evening and yard work takes a lot of my strength. But i am loving this time of the year. I enjoy every moment out door. Every inch of nature make me praise to GOD. Every time i sit outside, it made me thinking, How beautiful and how perfect Allah created every little thing and every thing filling some purpose. That make me think that GOD made us all including my beautiful daughters and we all have some purpose here. My daughters are here for some reason like all the other stuff he created like trees, grass,flowers, clouds and birds. GOD don't make mistake. He made every thing so perfect and there is NOTHING i can find that is useless. And i know my kids are perfect too and there is some reason they are here which we don't know and we can't ask why. I am great full that Allah choose me for his special work and i am loving and cherish every moment with these perfect beautiful angels. AL-HAMDU-LILLAH


Saturday, July 5, 2008 5:46 PM CDT


Abeerah had an other seizure this afternoon while she was sleeping. It went over 3 minutes. It stopped after giving her the DAISTATE. She is recovering from seizure now but having a after seizure issues of thrown her neck on the side, unresponsive, drooling terribly and watery eyes. I hope she feels better soon. Ameen

I know i have not update here in a while. Finding time these days is just seems impossible. Kids' school ended on 24th of June. Kids staying home means non stop care. There is lot going on here these days. With all the appointment and making extra unexpected trips to the Drs. add more to the list. First Bilal's face scratched falling from the bicycle which ended up a rash all over his face and neck and needed to go on antibiotics. Then Abeerah took a fall and got hurt on her forehead with her non stop keep trying to stand up.
But over all i really had a good time with kids and not rushing to make them ready and for bus schedule every morning.

Khansa is doing better and recover well from the surgery. Now we are watching her to gain some weight. Her feet is giving her lot of pain. Some days she do ok with the pain medication but mostly pain medication doesn't help her much. Specially if she fold her feet in ward and sit on top of them. I try to fix her position all the time but she goes right back with that.

Zahra having some trouble with her feet and knees these days. She is sitting a lot mor ethan she ever did. She needs help to able to get up and stand up and cry if she is on her feet for while. She is not even jumping much on the trampoline which she use to love the most and could jump for hours. It is just very upsetting to see her changing like that.

Abeerah is been very hyper these days. She do not sit still and non stop trying to stand up. If she is belted on her chair, She get her belt stuck in her neck in no time with all her movement and sliding out of the chair. She needed to be watched constantly these days. Her feeding tube been leaking a lot for some times now. Leaking from the sides and constant wetness causing her rash on her tummy. I keep the heavy cotton and bandages on to keep it dry but not seems helping much now. This acids mixed liquid from her stomach bother her leaking on top of rash skin. Dr. said, her tube is worn out and we have to replace the G tube and we have to do it every year. So she will be going under surgery in next week.

Ammar and Bilal are doing well. Ammar keep me very busy with her getting in to every thing all day long then not sleeping much at night. Some times i have to go with no sleep. Bilal is well but i am worried with his increasing anger.

I gave all 3 girls a haircut last weekend and cut their hair quite short for summer.

My sister in law (zarrar's sister) from MA visited us for some days with her 2 kids. It was nice to have her over. We also had a great 4th of July with friends and family over. Zarrar and i work hard for this event. Zarrar's brother put a great fire works.


Friday, June 20, 2008 2:49 AM CDT

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Thank you all for your prayers. Khansa's surgery went well. Recovery went great. Actually that was the most calmest recovery i ever have to dealt with. Getting up after anesthesia is always a challenge to hold down my MPS daughters and i always get browsed up with all the kicks and head bumps. I was amazed with my sweet Khansa. I stayed with Khansa over night in the hospital when Zarrar watch the rest of the kids at home. Carol(baby sitter) helped him till 10:00pm. He did a great job putting them to bed. He even learned the medications schedule. He is my hero.

After coming home Khansa stayed cranky and cry with pain rest of the day. Also Abeerah came home from school gagging a lot. I stay beside them taking care each one. Both did very well today. I am happy Khansa is better now. All thanks to GOD.

Khansa still eating soft foods by mouth. She takes a longer time to swallow. But i am giving all liquids by G-tube since she choke on liquids. So far all is well. I am hoping and praying that she can able to gain some weight. It worries me and i can't hold my tears when i look at her. Her back turn in to arch and she can't lay down on her back much. She does not move around her own or turn sides at night. Giving her bath is hardest time for me. She is like skin over bones. Her feet also turn quit in wards which gives her a lot of cramps and pains and she can't walk and stand her own any more.
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Khansa's Back
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Khansa, Zahra and Abeerah's feet.


I hope this feeding tube helps her get some strength back and we can see her smiles and her face expressions again which been lost for some time now. Ameen

Abeerah had a seizure on Monday morning while i was making Khansa ready for school. When i came back downstairs, Abeerah was upside down with face on the carpet. Her side of the face got carpet burn due to all the shacking and face rubbed against the carpet. I am thankfull that she recover from the seizure better than last times.

Girls had a graduation ceremony in their school this week. Sad thing is that they were in different days and we only received one invitation so we were able to only make it to Abeerah's graduation. Since Khansa was going under surgery on her graduation day, so principle did gave Khansa's award the same day with Abeerah. It was great meeting every one at school.
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Zarrar and Bilal had planed to spend the weekend camping with their foot ball team "Ababeel" and this year families were going too. Zarrar been asking me to come along with them. First, thinking of the very hot weather which we had for some days and Khansa's drinking trouble and weakness, i did not want to go but couple of days before the camping date weather got better and khansa feel well so i decided to go with them. In couple of hours before the departure, I know how fast i did the packing all the needed stuff for 5 kids and 2 adults plus the needed bedding for every one. I am so happy that i was able to make it and able to spend my birthday at so beautiful place on June 14th. It was an amazing 2 days i had with my kids and with lot of other community peoples and some Zarrar's family members. I can't wait to share picture with you all but my camera charger is not be found. To download pictures, i need to charge the camera battery. i hope i will be able to do it soon and then i will post the pictures.

Schools are closing on June 24th and summer program will start from July 1st. We are also changing Bilal and Ammar's school this year. I hope we can able to place them in right place to get them the help they need.
We Also had meeting with behavioral to set up a behavior therapy for Ammar. I really pray for him to able to calm down and able to communicate.




Tuesday, June 17, 2008 7:45 AM CDT

Please keep Khansa in your prayers today. She is going under surgery for feeding tube. She been having ups and downs with difficulty to swallow for some time. Past few weeks, she hardly drank enough liquid. Drs. Agree that it is time, she should get G tube placed so she can able to take some liquid in to keep her from getting dehydrated.
Surgery is schedule at 8:00 am on Tuesday. I hope and pray that all goes well.
Zarrar took her to the hospital this morning and i am going now after sending every one else to school. They are keeping her in the hospital over night. I will update on Khansa after surgery in details.


Saturday, June 7, 2008 0:14 AM CDT

June 8th
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With very sad and broken heart to tell you that one of our MPS friend Lauren passed away yesterday. She was just 10 years old. We met her two weeks ago at Isabel Jurado Foundation walk and run event. Please keep the parents and family in your prayers for their loss and for their strength. You can Check Lauren's website here.

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Lauren McCraw


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Last week and this week went really busy here. So many appointments to follow that i feel like really lost in between.

After getting back from SC, Abeerah suffer from bad Diarrhea and aspirating a lot specially during night time for some days. Diarrhea lead to diaper rash and it made her go through some painful time. She miss school the whole week. She is doing really great this week other than diarrhea is still around. She is on the same formula for long time and i am not sure why this is keep happening.

Khansa is not doing well. My heart breaks each time i look at her. My sweet little girls turn really silent. She stopped smiling and i did not see any expression on her face for some weeks. She having a hard time with her swallowing. She is eating alright but taking a twice the time to swallow and some times choke in between. She have hard time drinking. She is taking very little liquid in. I am trying to keep her liquid going with dropper but she choke on second or third sip. she do not look well at all. Just sit and stare one direction and do not move her own. I took her to the Dr. and she think, its time to get her in OR for G-tube. Sooner or later we could end up in ER. So it is better to get that done before it turn emergency.

Zahra is doing very well these days. She enjoys out doors a lot. Jumping on trampoline is her most favorite thing to do after getting back from school. We cherish her every smile and every hug from her and be thankful to Allah sending great days with her.

Ammar who did Amazingly well on our trip to South Carolina but he made it up all after getting back home.
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He been behaving very active and some strange behavior issues going on with him at night. It is just stressing me out watching him growing in size and age but no improvement in communication. He gets in to every thing. I stop him from one place and he gets in to other. Keeping his clothes on is not fun. I put clothes on and he takes them off in no time. After talking to our case worker of mental health service through our insurance, I took him to psychologist but it did not went well since Ammar did not let me sit to answer the Dr.'s question. Since clinic was in Dr.'s home, Ammar tried to get in to every thing and i keep running after him. Dr. gave me an other appointment so he can talk to me without having Ammar there. Me and Zarrar made the appointment but Dr. was not any help in terms of getting him some services. He think we should work to get him into a better program. Dr. also suggest me and Zarrar to take therapy sessions with him for the burden we are dealing with. I am not sure how just talking to a strange person about my problems will help me in any way.

Bilal is doing good but same old complains that he don't like his school. He spend full day at the musjid but not adjusting well. So for next year i am looking for a school where he can get better attention and able to adjust.

Our Washing machine broke down doing the first load of laundry that we brought back from South Carolina. The entire week i really suffer with laundry situation when we wash here over 20 loads a week. After washing clothes with hands, i give a lot of credit to people who invent such a products to make our life easier. Zarrar did some running around to look for new and bigger one but unfortunately our basment door is too small to get it through it so we end up waiting for our turn of get it repaired.

i had an IEP meeting for all three girls last Tuesday. Their case worker only mail me for two appointments so i did not made it to the first one which they decided to do it with out me and did for Khansa since her teacher and therapist had to leave for field trip. When i reach there, case worker went over briefly what is done and what need to be changed. It was really painful going through all the progress of the girls which is none. Each teacher and therapist talk about how much they have changed since last year. Khansa's report put me in tears. Abeerah's report was exciting but in reality she hardly came to school this entire year. Only days she is in school when she was doing great. But i know for sure her attention level and her smiles have increased. Some one can come closer to her without having eyes pulled out or hair, nose ears pulled or scratched face. She become very calm over this years after years and years of been very hyper and so quick in grabbing stuff where ever she pass through. It was nice meeting every one and i appreciate every one's hard work for all who been taking a good care for my 3 daughters this year. Girls graduation ceremony is next week. Abeerah will be going in classified six grade, khansa is in 5th and Zahra will be second grade. Schools are ending here on 24th of June. All 5 kids will be going for summer program.




Tuesday, May 27, 2008 12:55 AM CDT

I know you all waiting to know about our trip to South Carolina. It was one of the greatest trip i had but unfortunately for very short period. First we were not sure if we able to make the trip since every one were sick here but after starting antibiotic, Kids looks better. We left NJ Friday early morning at 4:am. It is 12 hour drive from NJ to SC. Most of the traveling went great. Kids slept some and watch some TV. Zarrar did the driving and I stay busy in the back, changing diapers, give medication, feeding kids and help Abeerah who need to be aspirated. But last some hours of the trip turn into disaster. Ammar spill the whole gallon of apple juice on the van floor and made a puddle which area i use to change diapers. Our bags and some blankets got damage. Abeerah had bad diarrhea which turn big mess and with heat and no Ac made every kid go crazy and crying out loud. We thank GOD when we reach to the hotel. We met Leslie Philips there, A very young and beautiful girl who dedicated her self for helping out MPS families. She help me out taking kids to the room. We had two great rooms with Jacuzzi. Leslie help me change the kids. We all freshen up and Leslie Jurado came over to take us to her house. There we met Leslie's rest of the family which i know them by names but met first time. Such an amazing family. I was finally able to meet Izzy which i was dying to meet. She is really beautiful girl. Her Smiles just melt my heart. She is the whole reason we were there. Leslie start this organization to honor the life of her daughter Isabel who have sanfillipo syndrome like my daughters.
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We had a great evening with every one. We make it back to the hotel and starting to make kids ready for bed. Zahra and Abeerah stayed up very late. I was really exhausted and the bed were so comfortable. I could sleep for days.
But had to be up early for the event. I woke up early and start getting ready for the RUN/WALK which was starting at 8:am. Leslie Philip came over to help me out with dressing the kids. We made it to the colosseum where runner was reaching toward the finish line. It was great cheering them up who were running for a great cause. We met some great friends and family of Jurado's there. Her community amazed me with their dedication to help out making this event a great success. We also met some other MPS families came from different part of the USA. Some we knew and some we never met before.
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Walk started with MPS children's walk first and people were so helpful with my kids that i was walking all my own. It ended in the hall and there was a slide show and prizes for the winners. Leslie and her husband Jimmy give out awards.
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Bilal was the winner of T shirt contest. His drawing was on every one's T shirt and he was so happy about it. He received a prize for that. He also loved spending time with a great guy name Jesse who was volunteer for big brother for him.
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Later we went to the church where MPS families get together and had a great lunch made by Peggy. She made a special lunch for my family. WE had a great time there. Ammar played in the toy room the whole time. There were volunteers who was helping me out with kids. Bilal was the STAR there and he give out his signatures on every one's T shirt.
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Kelly is an amazing young lady who is Jurado's friend and also she help us with flying to NJ and help with my kids last year when we were in the hospital with Abeerah. She helped me so much with girls.
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We came back to the hotel. Bilal and Ammar had a great time in the jacuzzi. I take care the girls' feeding and med. Made every one ready. By 5pm Leslie Philip and kelly came and took the kids with them to watch them at Leslie Jurado's house. They all plane this to give me and Zarrar a break so we can able to go out together. Since we don't know the places there, Zarrar try to find places on the GPS but we end up just driving around for hour looking for nice place to eat out. In the end we end up in OLIVE GARDEN. We had a delicious meal AND served well. We had a good time. This was one of the time when you leave kids with some one and feel so calm and relax knowing they are in good hands and well taken care of. We stop by Target but it was late and we need to pick up the kids, so we headed back to the hotel, pack every thing in the van and check out from the hotel. Reach at Leslie's house to pick up kids. Our van starting to sound funny. It sound like breaks might be broken. First thought of staying and check out the van in the morning but in the end we just start our journey back home. Next after noon (Sunday) we reach home safe.

I want to say a great thanks from bottom of my heart to Leslie Jurado who been a great friend to us and her entire family, Kelly, Jesse, Leslie philips, Liz and many others for giving us so much love that hard to describe in words. Giving my kids so much care. Your love and support mean a lot. Thank you for making our stay so beautiful. You all will be in my prayers every day.

For more pictures, check out here Pictures


Sunday, May 25, 2008 12:47 AM CDT

Just want to make a quick update here. Thank you for all of your prayers. We did made it to South Carolina on Friday evening. It is about 12 hours drive from New Jersey. We had a blast time on Saturday. We left South Carolina on Saturday night and reach safely back home Sunday afternoon. I have so much to share with you all. I will update soon with all details and pictures. Please check back soon.


Tuesday, May 20, 2008 11:29 PM CDT

Need Urgent Prayers
May 21st.
Every one is here down with fever. I mean all 5 kids and myself. It started from Ammar and now every one is down with it. All kids going through terrible time. Fever, sore throat, shivering, head ach, sneezing and runny nose. Taking care the kids not easy for me when every thing feels like spinning around me. I am praying hard for ZARRAR to not get sick with us. He been doing some running around today for picking up food, med and juices from the stores for us. I feel so terrible since we have plane to leave on Thursday night to South Carolina and i been looking forward for this trip for long long time. I want to meet all the MPS families who i get to know on internet but never met in person. I know your prayers always helpful so please pray for us to all feel better before tomorrow and we can make this trip.
May 20th
Girls been doing well for some days and i am very thankful for that. Allhamdulillah(all praise to GOD) But Ammar and i been sick from Monday. Fever, sore throat, runny nose and weakness had made me really slow down which is not good at all for my kids who are totally depended on me. Ammar also having a problem with peeing. He keep holding it in. We been through this before with him when we travel but i am not understanding why he is doing it now when we are home. He cry and just wants me to pick him up and then he does not want to get down. I try to put him on potty for 30 to 40 minutes each time for many times but he won't go. He is doing better today after two days of only going twice when he go through 8-10 soiled diapers a day. I had an appointment for him tomorrow and i hope i feel better to able to drive to Dr.

We had a great weekend. Saturday, weather was perfect and kids were well and we get to meet our old friends from Noor-ul-Iman school. we had a really nice time with them.
Sunday we had Our little Friend Jawad came over with his dad. I baby sit him while his dad help Zarrar with few water leaks around the house during rain. Jawad is doing well in looking around and paying attention but he have gain lot more weight which is not easy to carry him around. I feel for poor father who have to take care of him all by him slef.

We been planing for while to take a trip to South Carolina this weekend for Isabel Jurado foundation walk and run. Leslie been a great friend to us and her family and her entire community been such an amazing support to us. IJF been helping us with respite care over year. I can never thank enough to Leslie and her friend kelly for the help they did for us. They flying from SC and watch my other kids when we were at the hospital with Abeerah last July and we could not find any one to help us. There is many other MPS families coming to support the walk/run. I am exited and looking forward to go. Pray for our safe trip.

Please keep us in your prayers for our health and strength.


Sunday, May 11, 2008 1:35 PM CDT


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Please join us in celebrating National MPS Awareness Day. Please take a moment to remember and pray for all those living with this disease, and their families. Please wear purple and/or your purple ribbon proudly in honor of the COURAGE of children with MPS disorders.


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May 11th
First Happy Mother's day to all Mothers. I hope you have a special day today.
Mother's Day Glitter Graphics


This week went busy as always. Time and work around here don't match these days. I am so overwhelmed with stuff that need my attention and i feel i am lost in between. I got to find some way to put my head on the right direction.

Abeerah had a couple of bad days start of the week. She had crying out loud episodes. She cry for 15-20 minutes with tears and then ok for little while then cry again. I am banging my head to figure out what is bothering her. Send her to school since she looks fine that morning but comes home crying with a note that she cry all day at school. Dr. think its behavioral and we should increase her Seraquil dose. Which i am not happy about it because Seraquil had a side effect of gaining weight and every ounce she gain is felt hard on my back when i have to carry her to 16 stairs up 2-3 times a day and 6 stairs outside putting her in the bus. I am happy she is better now and smiling a lot. Evening and nights don't go good. She chock and cough a lot. I also see during her sleep her pulse turn very weak. Some times i find her very still that i have to shake her to see if she is ok.

Khansa is well and eating drinking fine but when you look at her she do not look fine. I get in tears when ever i am taking care of her. Specially her bath time, All her bones are sticking out and only skin is covering them. She is on high calories drink but don't seems making any difference. She don't smile at all. Drooling so much all the time. Can't able to turn her position with out help.

Bilal, How much i worried about him. I do not know what to do to make him not to get in trouble at the musjid. He is so sweet some times and other times he is totally opposite. We are practicing to learn to ride the bicycle. Oh man! He do not have a good balance on the bike or standing on one leg. But hopefully keep up the practice will do.

Zahra is my sweet heart. She is happy these day. She loves to jump on the trampoline. So sweet of her smiles when i put shoes on her and she knows that she will be going out. Some of her loud loud moments when she get upset staying indoor. She love to be around people.

Ammar....He is too much. If i can just keep his clothes on him. He goes out with clothes and come back with out any thing on him. Other day i went to the bank and took him with me but he run away while i was in the line waiting. went to look for him and he came out without all the layers of clothes. I try to tape around his clothes, I pin then but no help. he takes all off. i sew some overalls for him and that is a great help but with him getting in to all kind of mess i need tons of those.
He also learn to open that fence gate to get on the street and that put me on night mares. I am trying to be a hawk on him but i guess with my age i can't think that fast. He is growing in to big boy and that increase my worried of him not talking or communicating. where i see some improvements in his understanding there i see he can't say those words right that he use to say it fine. He learn his alphabets at age of 18th month but now he can't say them clearly.

I want to say thanks to Karen who been an amazing support to us and comes to have some time to spend with Bilal. She is a beautiful person and i admire her for giving out her time for community work. She took me for fabric shopping and I really enjoy the long ride and the talk with her. As I love to work with my new fabrics but there i am so frustrated since my both sewing machine broke on me this week.
As a mother my head is split in so many places and being worried for each one. I have started a bad stomach pains each time i think of my kids. First i thought may be i eat this or that but that is not it. Its the worries that i have hard time to digest it. I feel stomach sick all the time.


Tuesday, May 6, 2008 1:43 AM CDT

I am going to make a very brief update today since some thing really wrong with my computer and it is working very very slow for some days and taking really long time to write a single sentence. Waiting for Zarrar to take a look and see what need to be fix.
Girls are doing very well lately. I am very thankful for that. Weather is back to nice weather again and it is a true blessing. Every thing feels so beautiful. All praise to GOD. I am able to take kids in the back yard and they love to be out door. It feels so beautiful when kids are happy and calm.

Abeerah doing well during the day but at night she is coughing /chocking lot more. Khansa is mostly very quite but cry when she can't move her own. Not giving any smiles these days. Zahra have some of her loud moments and some time she looks very agitative and not happy at all. She also having trouble sleeping at night. But her smiles and her laughs are priceless.

Ammar is doing the same. He keeps me very busy all day. I just keep running after him to stop him from climbing up high. Standing in the windows on second floor or keep him from making mess one thing to other. He is constantly doing some thing and nothing is safe from him. He is making his own songs and sing it while playing. That is just so cute. Some times i feel like he have wheels under him that he reach every where in no time.

We had a great weekend. Visit from very nice young girls from noor-ul-iman school. We had a great time with them. We visit my cousin's house for dinner and sunday catch up with our nice old friend Rachel and James who came to visit us. It is always nice to see old friends and their support makes a whole a lot a difference.

Thank you all for writing in the guest book with nice words. I really appreciate your duas and your support.
Keep praying for us for our strength and good health.


Tuesday, April 29, 2008 0:50 AM CDT

"In the name of God, most Gracious, most Merciful".

Things were overwhelmed and kept me very busy during kids spring break. I did able to take the kids out to park and to the mall. but last some days Abeerah did not do well and we all just stayed home.
Saturday start crazy but end up amazing. We were invited by our little Friends from Noor-ul-Iman school for pancake breakfast. I had no planes due to Abeerah not doing well till late Friday night we decided to go. Zarrar and i wanted to leave very early so we get there before 9am because it it over an hour drive away. With Abeerah's crying and trying to make hyper Ammar to sleep, i end up going to bed very late and very tired. I as hoping Zarrar will wake me up when he get back from work in the morning but he came home and fall a sleep to have some rest before the long drive. well....I woke up with a phone call from the School asking what time we are getting there. So i give my self a speed to make all kids ready and feeding breakfast to all. You must know in hurry every thing goes wrong. Abeerah pulled her feeding tube out and made a huge mess so she needed to wash up at the time when we started to load kids in the van. Printer won't print the directions. Before hitting highway had to turn around for Abeerah's connector tube which i forgot to pack. Then our GPS won't work and unable to get some one on the phone for direction so we turn around from the high way again and cancel to go. Since we all in the van so we head to the park other way from the school. Reach to the park and got a phone call from Maria and she insist if we come since all waiting for us. So again we start the journey. But got lost and back and fortth from gas stations and the phone call we made it there by 1:30pm. Felt really terrible since half of the people had left. All the girls welcome us so nicely. it was so nice that tons of hands there to helping me with kids. They took Bilal and Ammar out to play. Abeerah started to fuss. Very Nice sister Maria took me to pharmacy to get the medication for her. Then we were called for breakfast. We had given a ROYLE treatment. In a hall there was a huge table full with every thing for breakfast. All my kids were getting fed by sweet 8th grade students and i was able to eat all my own ON THE TABLE. So amazing. Don't happen to me often. I felt like a queen. I can not thank enough to all who made our evening so beautiful and for all the love and care they given to my kids. I can see how great it feels having friends support. I wish all can understand this that what as little as your smile can do to those who are in struggle. We had a wonderful time. By 4 pm we all ahead back home. Zarrar left to work after we reached home. Abeerah did not had a good rest of the evening. She cried time to time and then calm down for while then cry again. I continued with medications but seem like not much help. Some moments it felt like that it is her teething bothering her and some point its like some behavioral.

Sunday, Abeerah slept late and when she wok up she stay calm but looked very weak. She drooling whole a lot. After breakfast Zarrar picked Mr. Adil up. He have a special need boy Jawad which i mention here before and i baby sit him time to time. We hire him for teaching Bilal. While he teach, i will be taking care his son. Mr. Adil is in need of help but our community fail again providing help to those in need. I am so sad on this part.
I was taking care 5 special need kids. Abeerah was continuously keep chocking on her saliva. When i got a call from our neighbor that some Pit-bull dog attacking their kid. Zarrar and Mr Adil ran out side we call 911. It is so sad that two huge dogs attack together and little 7 years old boy hurt bad. Father try to help but he got also hurt. Ambulance taken them the hospital. Zarrar been back and forth to the hospital with Mr. Adil. Its been really sad here. Police catch the dogs and so the owner. They keeping the boy in the hospital for some days. Please pray for him. Father is the Imam(minister) of our musjid.
Weather turned cold here again. By evening Abeerah and Khansa running a fever. And this morning Ammar also got cold. So kids stayed home today. Abeerah is not doing well. She is drooling a lot and coughing up a lot. Afternoon went ok. I had made plans to take our neighbors kids to the hospital so they able to see their brother who is going under surgery with dog bites and broke his arm from couple of places and parents are staying in the hospital. unlucky, Carol(babysitter) called for not coming in today. Neighbors were all ready to go so Zarrar watch the girls and Ammar. So i was able to g go out for an hour. Drs. want to keep the boy couple of more days to see if he gets any infection since there is no record of dogs had given the shots. Keep him in your prayers.


Thursday, April 24, 2008 1:42 AM CDT

Quick update.
April 26th.
Last two days Abeerah been very uncomfortable and very agitated. Did not sleep through out the night. First i thought it is stomach related and try all i could think of it making her comfortable. Medications( pain, gas and For BM), messaging and warm baths to make her relax but no help. She been one corner to other corner crying with tears. That kills me to just unable to figure out which her part is bothering her this time. In trying to figure out and going i put Orajel on her teeth not knowing where the problem is which did stop the crying and she slept for some hours. Now i am sticking to that and keep putting every 6 hours with pain medication. I assume that she is once again fighting for her Molers to break the skin. I am praying they get out soon.

I am so exhausted running after Ammar all day. He is too much to handle. We can not find a thing on its place since he is home. All day i am picking things and cleaning after him. Time to time i hears Bilal and Zarrar shouting some where asking who did this.....or who destroyed my......
Monday, when he goes back to school, i need to rearrange the whole house.
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May 24th
First I apologize for not updating here earlier and those who i have not answer their email. My internet had a little difficulty to get online.
Allahamdulillah. All is well here. Kids having a spring break this week so we all home and relaxing except Bilal who is not liking to be the only one going to musjid. Where i am on my feet all day but i am enjoying my precious time with my kids. My day is, running after Ammar from morning to night. Keep directing Bilal for his schedule and home schooling. Keep an eye on Abeerah from chocking, gagging and from her non stop trying to stand up and fall. Keep changing Khansa's position from one side to other and clean her constant drooling. Zahra is having some moments of crying. She looks very upset most of the day and sleeping very little. My heart breaks looking in to her eyes. Where is my princess's smiles have gone. What is this horrible disease have done to her. By night i worn out mentally and physically and feel like can't go on but start a new day again as soon as i see my sweet angels faces in the morning and get busy with them.

We are blessed with a great weather here. It is so beautiful to be out door. Looks life is put back in to every thing. All praise to GOD who created so much beauty in this world. We are fortunate with big yard which is lot of work for Zarrar but we are loving it. Ammar spend dust to dawn in the yard. After few minutes out his clothes comes off and he is playing in dirt. He always find a new place in some hidden corner to dig and i am just running one side to other looking for him. I can not even put that in counting the times i have to drag him inside and clean him all up and dress him.

I want to say special thanks to IJF for the gift of two swings they send for the girls. I am so happy to see my daughters able to enjoy the swings again. Abeerah smiles the whole time when she is on.
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We had another visit from our little friends from Noor-Ul-Iman school on Saturday. It was really nice meeting new friends and we had a great time with them. Thanks for all the help taking the girls in the back yard also thanks to Sara who was able to write Nasheed for Zarrar who been so happy with that which he been looking for long time.


Thursday, April 17, 2008 2:24 PM CDT

Zahra had some rough, Hyper and aggressive days. She looks uncomfortable, confuse and scared. Thank GOD for good weather here, Jumping on trampoline gives her some relief. And she is happy to be out in the back yard.

Abeerah having a great days. Thank Allah for that. She is very alert, smiling a lot and sleeping well. I hope we continue having more of these beautiful days. Ameen.
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Today is Khansa's birthday and she turn 10 years old. Why i am so sad today? Mostly people get excited that their kid is growing big and learning so much. But here is different. Her turning 10 means she step in the age where you start counting the moments with your child and knowing future is dark. You have to put your strength together to watch your child's more pains and sufferings.
Khansa having a really hard time standing or walking. He turning inward feet cause her lot of pains. Her back is turning arch shape. She having trouble swallowing food and drinks. She is losing weight. and stuff goes on and on.
Where i am sad there i am so thankful too. Khansa is a sweet little angel GOD have given to us. She is a true blessing in our life. I love her so much. She is like a beautiful flower that you never get enough its smell and beauty. She have really bring millions of smiles to us. Every one who gets to know her, fall in love with her. Her child hood memories always make me smile. She was a sweetest little girl who always ready to sing and act.
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I have no planes for her birthday yet but hopefully i will get a cake for her for sure. School ask to celebrate her birthday at school after spring break.




Wednesday, April 9, 2008 8:03 AM CDT

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"In the name of God, most Gracious, most Merciful".


Abeerah had two seizures yesterday. She had one in middle of the night at 3am and other in afternoon. Both were about over minute long. So she does not have really bad after seizure effect like last couple of times but still she is not her self. Drooling non stop like water line had left open and body in continuously shaking. She is not moving at all and stay where ever and which ever position i leave her but she is looking around and aware of her surrounding. She been gagging a lot. Please pray for her.

We had Little boy Jawad over yesterday who is here for treatment. He seems improved so much. He have gained lot of more weight and it is getting extremely difficult for father to move him around. He is in extreme need of your financial and moral support.


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Khansa having a little balance Issues. She can't sit well and always fall to the side. She can not stand her own any more. We start sending her to school in her wheel chairs from Monday. We pushed it for long since we don't have a ramp here and it needs quite a strength to go through the wheel chairs and the girls separately through our 6 front stairs every morning. But Khansa's condition getting worse was hurting her during getting her from the bus and putting her in the bus. It makes me really sad to see my sweet butterfly changing so much. PhotobucketPhotobucketPhotobucket

Girls are doing well and I am very thankful for that. Abeerah been giving us a lot of her smiles lately.
We had a great but very busy weekend. Saturday we were blessed with a great weather. Temperature was between 60-65. I had made the promise with Bilal for some times ago to taking him to the park when temperature goes above 60s then we will go. He been keep checking the temperature every day and happy to see the warm weather.
After breakfast, made them all ready, load wheel chairs, carry them all to the van through our 6 painful front stairs, i hate when my back can't hold my own weight. But promise is promise. We made it to the park. Take the girls out. Bilal gathered so many ducks by feeding them bread which he sneaked from home which i bough this morning. Kids where so happy watching the ducks. All the old memories just came back to me when kids were young and i use to bring them here. We been coming here for long time and Abeerah, Khansa and zahra ran after ducks for years. It is painful to see them like this now. I try Zahra to get out of her chair and able to walk but she was in her hyper behavior with being very loud which brought lot of stares at us so i put her back in the stroller where she just bang her head back and forth to her back of the stroller. After we walk to other side of the park. I was pushing two strollers and it turned three when Bilal decide not to push Zahra any more. He wants to run around and have fun. Don't blame him. But With 3 strollers, Peoples just stop walking and stare at me like i am doing some thing horrible, some really even forgot to close their mouth. One lady came closer and say hello to the girls which made the girls happy. Kids were hungry so we walk far end to the food area and find out it was closed. Bilal and Ammar ran to the kids play area. MAN! it was packed with so many people and kids. Ammar saw the swing and ran and so is Bilal after him. In no time, I lost boys' sight and i got panic, should i leave the girls and look for them while Zahra doing her back and forth thing. I was worried that if Bilal will let go Ammar's hand then it could turn a night mare. Well Bilal amazed me and bring his brother back dragging him out of the crowed holding from his shirt who was trying his best to run away. Bilal! Masha Allah, what i do without him. I let Bilal go and play and find Ammar a swing to sit in. We walk back to the van an other mile. Pack the kids in the van, pick some food way back home. It was a great fun. At least boys were very tired and slept well.
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Sunday went busy with kids. Give kids baths. And cutting 4 moving kids' nails made me exhausted. I was tired and in lot of back pain but happy that we all had a great weakened together.

Zahra been sweet but having some terrible hours of misery when she just not happy and so louder that she can be.
Ammar is just too much to handle. He keeps me really on my knees cleaning after him. He have trouble sleeping at night and by the time he fall a sleep, entire room's lay out had turned upside down.
Khansa's birthday is around the corner. She will be 10 on April 17th. She is not drinking well any more. I called the Dr. to make her an appointment but there is long waiting list. I hope they gives me date some thing sooner than after 4 month.

Some of our MPS friends needs your prayers. They are going through some rough times.
Jasmine is in the hospital fighting with pneumonia.
Chase is back in ER. His Feeding tube came out. Poor boy going through so much.
Isabel having a long seizures.
Chip is struggling to breath.


Thursday, April 3, 2008 0:20 AM CDT

Quick update-April 5th
Thank you for all of your kind words of support and prayers. They really helps in our daily struggle. I really appreciate that. I pray to GOD from bottom of my heart for blessing upon you in return.
Abeerah jump back to her self, smiling and her usual hyper movements after having two very heart aching days. We really cherish her each smile and thankful for that. She is back in her try try again thing to able to stand up. She do get succeed couple of time but fall right back...OUCH. But she won't give up trying.. Thats Abeerah. I really have to watch her close when she is on the ground. I hate those seizures does to her. Praying for no more seizures.

I am so happy that weather is getting better and kids are doing well. I hope to take them out to the park. I have not get out with kids in a very long time. I praying that my back stay in peace and i am able to get some good time with kids.

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I am on my knees asking Allah for his mercy here. I am asking your kind prayers too because they helped in the past and means a lot to me.
I been dealing with seizures, i get the chills just even with that word and never get use to them. I have always had a fear of Abeerah going through seizure and while i am not there for her. And that fear happened. At least thats what i believe had happened.
Monday i hurt my back carrying the kids to the bus and had a really rough day due to that. At night Ammar kept me up very late. I did check on girls as usual couple of times at night. When i woke up in the morning my back was in lot of pain and i was unable to carry anything so i kept the girls home. I let them wake up their own. I keep checking on Abeerah and she was sleeping tight so i let her get her rest. By 11 am after 3 times checking, it did not seems usual so i try to wake her up but she was not responsive at all. I carry her down stairs and she let her body and head hang loose(not like her). She could not sit by her own, her body was shaking constantly, twitching of the eyes and Mouth foaming was keep drooling. That was the symptoms Abeerah been having after the seizures in past. It hit me hard that being so close by at next room to her but not there for her when some thing could go terribly wrong. Yesterday all day i watch my baby in suffering and my regret of could of.. should of... made the day really painful. I believe that i missed her hard breathing noises during seizure if there was one in between Ammar's clapping and laughing out loud in my ears or the intercom was set on too low since she been doing well for a while.

I kept her home today. She looks the same other than was able to move her eyes around and turn her self when laying on the sofa. She was gagging and coughing up A lot today and i kept her feeding on a very slow speed. It seems like her recovery after the seizure is getting harder and longer. It is so hard to watch and gives me feeling sick in my stomach. My believe in GOD is strong and that is the only thing keeping me standing here.
I had a appointment with Ammar's speech therapist today and we talk about different issues. She think Ammar had made a great progress since she sign up with him from last September. I would call it he just get back from the dive he took last year with their lack of therapist and no consistent staff and teacher.

I want to thank Karen (Bilal's volunteer Teacher) who took me out to fabric store as we had made plane last week. I wanted to cancel it since Abeerah is not well, but Zarrar insisted that i should get out to take my mind some where else. He watch over Abeerah. Bilal also went with us. He had a great time wandering around with karen while i enjoyed looking through tons of fabrics. Thank you Karen for all the support you have bring to us. Your time with Bilal is priceless. He really enjoys your company and it means a lot to us.

My back pain is getting worsen. Pain Med helps but for very little time. My kids are the world to me. And i want to take care of their every need and comfort but it is starting to hurt me so much that i became every much limited in pass couple of weeks. My every breath make this dua to Allah to give me strength and health to take care my precious angels my self as long they are here.
I hear so much from people every day. For them, i don't regret a bit having them. I think my kids are beautiful. GOD made them perfect and send them here for some purpose and HE choose me to take care of them and i am happy to have them.


Monday, March 31, 2008 10:23 AM CDT

Thanks to all of your prayers, Every one is feeling much better now. Zahra still have some loose BM going. She did great since last night and i am hoping she do better today.
This week went really busy for me. Kids were home sick from Monday. Changing tons of diapers, cleaning, so much laundry and keeping up with the meds just kept me on my feet.

We had a visit from our little friends from Noor-ul Iman school this Saturday for couple of hours. Bilal went to play Golf with boys. Girls play with Ammar and took Zahra and Khansa in the back yard for walk but not too long because it was cold.

Thanks to IJF, I have help again on Monday, Wednesday and Friday for some hours.

I am in need of your prayers for my strength physically and emotionally. My back is staying in lot of pain and i am hardly making through a day.


Sunday, March 23, 2008 5:07 PM CDT

Another quick update. Thursday 12:30 pm
Wednesday was another very busy day here. Kids still not feeling better. Some cries with pain and with not feeling pleasant and some just throw up. Wednesday again no one made it to school. I been worried about Khansa. She is not eating or drinking much since monday but other than that she been doing better than every one else.
Khansa and Ammar felt better this morning and made it to school but Zahra and Abeerah having a bad diarrhea so they are home. Zarrar, Bilal and myself are feeling not well either. we all 3 are down with stomach pains and feeling really yucky.

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Quick update. wednesday, 2:55AM
I think i spoke too soon when i said girls are doing great here. actually till Monday morning every thing was fine. Kids were doing good and all 4 went to school. Bilal start his study ok at home but by afternoon, My stomach start growling and Bilal complained not feeling too well. When i check, he was burning hot. Hour later Zarrar said he having a bad stomach pains. Ammar came back not well and went straight to bed. Girls came from school in bad condition. Abeerah had thrown up all over her self and running high fever. Zahra and Khansa was covered in Diarrhea all over. Bus driver said they did not feel good all day. It took me over hour to clean all up, put change of clothes and make them comfortable. Give them meds to take the fever down. By evening all 5 kids were laying down and sleeping. By night i had change many diapers. My self was having a very bad feelings of throw up and keep running to the bathroom and i did sat there time to time but nothing happened, just felt yucky.

Tuesday all stayed home. Busy day for me. Keeping up with diapers, medications and cleaning on top of all the usual stuff. One old friend came over and told me this virus is going around and many families are feeling same way. I hope it goes away soon. Ameen.

My computer had broke down and send out to shop for couple of days so i wanted to apologize all who i did not write back.

Keep praying for my family to get better.

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Girls are doing well and it feels really good having them calm and happy. I am very thankful for that. But need prayers for Ammar. He is running a fever and diarrhea for last two days. He is keeping me very busy. I have to run after him all the times. He takes all his clothes and diaper off in every few minutes. On top open the window and stand in front of it. I think that is how he got the cold. Me and thank GOD for Bilal trying to keep his clothes on him to keep him stay warm. Due to his diarrhea and keep taking diaper off, keeping me on my knees to constant cleaning. Even with all the sickness and weakness going on but he did not slower down a bit. He is cute like a button. I hope he feels better soon.
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Sunday, March 16, 2008 2:21 PM CDT

Update Monday.
Thanks to all of your prayers. After a very miserable 30 hours of watching Abeerah crying out loud and tears continuously falling from her eyes, She calm down Monday morning and slept good. what a heart breaking that is when you don't know what is bothering her. She woke up feeling very weak and just stayed laying down and felt uncomfortable and cry when i tried to make her sit. By evening she started to gagging and coughing up with the mucus. But i am happy she is better and out of her what ever pain that was. Between Zarrar and I running to the stores and getting what ever we thought and some one told could help her. I thought if she stayed this way then i will take her to the hospital Monday morning. I am thankful she got better because i really hate to be in the hospital.

Last week went hectic. My back pain make every thing harder for me. If i make all kids ready in the morning dealing with all the 16 plus 5 outside stairs back and forth and able to send them to school then i just end up fixing my back rest of the day till they get back home. when i am also home schooling to Bilal. Speaking of school, i want to thank Noor-UL-Iman school for coming by on Saturday for couple of hours and give us their help. They took Ammar, Zahra and Khansa out in the back yard and help them walk around. Boys took Bilal to the Library and he was happy. This their little help makes a huge difference in him which i am very thankful for.

One of our MPS friend Chase is in the hospital for over three weeks now and fighting for his life. We went to visit them in the hospital in NY on Tuesday. It was so heart breaking to watch him like that. Its been really sad between entire MPS society due to his condition. Parents are devastating watching his pains and stay beside him just trying to hold themselves strong. MPS is just a horrible disease. No one should see their child's suffering.

Francy gave me the notice on Monday for not coming any more for help . I was very sad over that. It took me so long to find her for help and after month she wants to leave. I request her for baby sitting on Friday so i can make it to the wedding which i been planning to go for while.
Friday, Francy did came for baby sitting with her friend and i was able to go to the wedding with Zarrar and Bilal. There was lot of thanks to GOD in the air at the wedding because Father of the bride got in to an accident and knock him unconscious with head injury, night before the wedding. We all very thankful for his recovery and happy to see him at the wedding. It was a beautiful wedding. We had to leave early for kids at home but i enjoyed my time there.

Keep praying that Abeerah continuously do good. She seems like she might get fever. And fever lead to seizures which i am not looking forward for.

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Dear Readers.
Thanks for coming here and checking on my daugters and rest of us.
Need your prayers today for Abeerah. She is not doing well. She been crying out with tears since yesterday. First i thought it is behavior and due to the reason because her medications did not given her on time due to med problem with the pharmacy who took three days to prepare and tell last minute that they don't know how to compound them. Thanks to an old friend, Zuhra who made them and drop it off here and Thanks to Husna who ran and got her reflux medication. But even after the medications, she still been very upset. If she is not in her chair belt in, she hurt her self by throwing her self every direction. I am not sure what is bothering her. Her body is continuously shaking but no temperature. I am trying to every thing to comfort her. I do not want to end up in ER, especially on sunday. I hope she feels better soon. Holding her and carrying her here to there, my back is in so much pain and i am popping pain medication like a candy. I will update in details soon.

Please do pray for one MPS family. Their son Chase who have MPS II(Hunter Syndrome)and he is not doing well and its been three weeks, he is in the hospital. I hope Drs. can find some answers to help him.
Here is Chase's journal


Tuesday, March 11, 2008 4:26 AM CDT

Sorry for not updating for while. Kids are well here but having some ups and downs here and there. My back been in so much pain lately. I can not stand for more than few minutes or sit or lay down. That had slow me down so much.

NO MORE COLD. I can't wait for spring. Winter is not been so great here with girls sickness and all. Each time temperature goes up, i go out side to feel the weather and count down the days, i can bring my girls out there.

Abeerah been gagging a lot these days. Weekend did not went really great with her. Lot of time i notice with her changing vision that she might be going to have seizure next but thank GOD after giving her seizure med, we did not went that far.

I did experience some moments when i freak out feeling, i might lose my child but this Thursday i had a unforgettable moment with Khansa when she choked on her last bite of food. it was mashed ravioli since she been eating every thing and eating alright but i guess some piece left it unmeshed and she swallow it without chewing it. I saw her choking. I slap on her back, push her belly from behind and I try every thing to get the piece out. Scream for help but other than my other 3 non talking/listening kids, no one was around. I saw her loosing. Oh man! that moments, I try to use suction but machine was unplugged. My hands and feet turn million pounds and her life just flash front of my eyes. Put my fingers in her mouth and try to take some part out. Then turn her upside down and bang on her back repeatedly saying you can't leave me. Not yet. And THANK ALLAH, piece came out and she was ok. Those moments teach me so much. "Life is precious for sure". Each time i think of that moments, i just shiver head to toe. Thank GOD my khansa is alright.
Each time i look at my daughters, i think how great full we should be to GOD. So many little things we don't even realize of his blessing on us. Like chewing and swallowing your own food, Able to move your tongue around. Able to hold things in your hands and so on.
Khansa is doing alright now. Just don't seems to gaining weight. But i see she is getting taller. She hardly move from one place to other unless i move her or turn her. Always chewing on her index finger. Cry when i touch her for brushing her teeth, changing, bathing or comb her hair. But she is so beautiful. Her smiles are very rare but priceless.

Zahra is going through so much changes. She started to looks at me with confused vision and that hurt me so much.

I request for a special prayer for strength to the parents who just going through a heart break with their child recent diagnoses with MPS. In two weeks i get to know 3 parents recently who are new with MPS. I know how hard is that to see all your dreams crashing down front of you which you build in nine months of waiting then holding child first time in arms and seeing an amazing happy life ahead of them. Instead of dreaming for their graduation, weddings, grand kids you have to dream about their pains and graves. May Allah give them strength to deal with all their heart aches. When i find an other child diagnose with it, my heart just hurts o much. I do not want any parents ever have to go through this.

Please those of you keeping my Baby Ammar in your prayers, i request continue with that. Last couple of day he been repeating words so amazingly. Me and Zarrar get so exited over that. Show him food and make him say what ever you want him to say. That is Awesome. I hope he don't go back to silent again. Prayer please.

Bilal got in trouble at Musjid and he is back home again. He have hard time geting along with other kids. He was not learning any thing there. He needs a individual attention. He been in a great mood since he is staying home. He spend lot more time with Ammar and help him and teach him. Other day for school, Bilal dress him, put shoes and jacket on him and he was so kind and gentle with him. I was amazed. Bilal is an amazing kid. I do not know what i do with out him.

Tayyaba


Tuesday, March 4, 2008 7:58 AM CST

All praise to Allah. Girls are doing very well at this time. We had a great weekend. Visit from our little friends from NOOR-UL-IMAN school on saturday. They all are wonderful students. Its amaze me that they come from quite far to spend time with my family on saturday. They took Khansa, Zahra and Ammar out in the yard to walk around. They play with Bilal and then took him to the library.
Sunday some friends came over. Also me and Zarrar took a turns to visit our new neighbor's gathering.

Things are much better here. I have help 3 time a week for some hours. Her name is Francy. I have not left the kids with her yet because i am not sure if she is ready to take care of them all her own. But she is a great help. Doing laundry is out of my head now. Oh man! how much relief that is. All thanks goes to Isabel Jurado foundation for this help.

My worries keep increasing with Ammar. I don't know what to do with his hyper behavior. I talk to neurologist and she wants to put him on medication but i know once we start the medications. He will be on them forever and all the side effects. I really wish he can talk and able to communicate. I am dying to hear Mama from his mouth.

Thank for all your prayers.


Monday, February 25, 2008 9:54 AM CST

Feb 27th.
Today i am in tears again. And this is third day that my eyes are wet. But at least today they are the happy tears. After having a very heart twisting, painful and down to earth days, i got lots of smiles from Abeerah today. And that made my day. Thank GOD for that. After seizure on Monday, it left a huge effect on her. Her whole body stayed in constantly shaking and given up on every thing around. Only thing i could see with her is her eye balls moving and she was breathing. She was constantly drooling and her eyes been constantly dripping. It took two days till she get back to sitting her own and smiling again. I talk to her neurologist about this. She said, that since each time Abeerah had seizure it left damage to the brain more and more when this disease itself is progressive day by day. So As much she will have seizure that much longer it will take to recover it. There is nothing they can do just to control the seizures. She increased her seizure medication. Hopefully this will work and mine and your prayers on top for no more seizures.

I am never been a big Monday fan but this Monday will stay in my memory for long. Early i went to drop the lunch for Ammar at school and had a long talk with Ammar's teacher about him not showing any progress. He having a lot of behavior issues these day which breaks my heart. He goes in to laughing and laughing loud mood for hours, Run one corner to other corner in the room clapping his hands and do it non stop for 2 hours. Keep taking his clothes off from head to toe and roll on the ground. I am not happy with the school not giving him enough therapy which he needs.He gets only 2 times a week speech therapy and that is not enough for him. I know therapy can help him and he did so well when he was with early intervention and getting 5 days of week ABA therapy.

Zahra and Khansa are doing well.

Bilal is doing alright. Some days are better then other with him. He not been happy this year's weather since he loves snow and we did not had much but last Friday we had 8 inch of snow fall. He was so happy and spend hours and hours out side playing with snow. Next day Zarrar help him to make an IGLO. They call next door kids for help and done a great job.
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Zarrar is feeling better but still have some cough left. Back to working hard every day.

I know this given life is blessing from GOD and every one have a purpose to fill. I always wanted to help out others. I did not get to lead that life but i know Allah chose me for some thing else. As much i hurt each day watching my children in pains and getting closer of dying that much more i learn each day. How precious life we have and how bless we are with every little thing we have given and how much we can do than those who just suffer in pains and live for each moment. So we should be great full what we have and always look at people down from us, not those up from you. It will be lot easier to live through our hard days

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Feb 25th
Need your prayers!
Abeerah had a very scary seizure this morning. I was in the kitchen making breakfast when i heard some sounds. When i reach there to check on Abeerah, I found her face down on the carpet and having a seizure. I turn her over and her face had turned really blue and mucus was coming from her nose and mouth. She was not taking air in. After i clean it all, she was able to take in a big deep breath. I am not sure how long she been seizing before i got there. Seizure was lasted about 4 minutes long and stopped after giving her DIASTAT. I can be strong and all but watching seizure is way too much. I can't really watch my child going through this horrible thing. Each time she had seizure, i feel i had lost the ground under my feet and feel so helpless. Each time i look at my baby, my heart ache. What this ugly MPS have done to my sweet Abeerah.


This week went really BBBBBBBUUUUUUUUUZZZZZZZZZZYYYYYYYYY.
Kids been home for a whole week. From breakfast to lunch and dinner, tons of diaper changing and lot of cleaning kept me on my feet most of the day. Abeerah did not feel too good the entire week. Zarrar been sick and then Zahra and Abeerah got flue. Ammar start new thing taking his entire clothes off every 5 minutes and i keep putting back on and it goes on all day.
But overall, i did enjoyed the relax time with my kids. I am very thankful each day i get with my sweet angels from heaven.

Abeerah did not feel well the entire week. One thing to other. Poor girl have to face so much. She feels very uncomfortable due to her reflux. She did much better after increasing the dose but still shows some discomfort after each feeding.


Monday, February 18, 2008 2:59 PM CST

Feb 21st Journal

Abeerah had couple of very bad days. She been very very uncomfortable and screaming a lot. She been hurting herself by throwing her body here and there. Watching her closely, i felt she is very uncomfortable as soon as she lay down or pull her head down. Learn from the past i Increased her REFLUX med, which bring her some comfort and she was able to sleep. I will be seeing her pediatrician soon to see if we can change her medicine to some thing stronger for her reflux. Some times i do feel that we should have gone for fundoplication for her when she went under the procedure for her G-tube.

I been working on setting up the medications pick up since we do not have the luxury of drop it off on the door steps by Hospice. Oh boy! These meds are very expensive. The one pharmacy sell them in liquid form here do not accept our insurance and we have to pay in front first to get the medications. Then we can apply to insurance for reimbursement and who knows how much will be covered in the end since our insurance covers some part of prescriptions.

Zarrar also been sick and missing some days from work. House been a full house these days since schools are closed for winter break. Ammar is really making me run after him all the time to protect every thing from him, from salt/sugar to my box of threads and buttons.

I am feeling my slef as an old lady these days. Each time i get up from sitting, i can not make my self stand straight right away. I have to walk with bending back for some time before i can able to straighten it out. I know all the weight of carrying girls and fighting through every day stuff with them is lot on my back. I hope this is not a permanent thing because, oh boy i do feel and look horrible.

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Feb 18th journal

First I want to say a great thanks to my great friend Leslie who is a mother of a MPS child but even dealing with her own heart ache, she always ready to help me out. I can not thank her enough for all the help she had given to me flying from SC here and watching my kids when we were in the hospital with Abeerah and could not find any one to help us. Thank you Leslie. You are an amazing person.
Isabel's journal

Past week had some ups and downs with kids. But the good news is that finally we find a lady for help. Her name is Fracie. She seems very nice. She have a lot to learn how to take care each one of the girl. But she is picking up fast.
We had a busy weekend.
Saturday, We had a visit from NOOR-UL-IMAN school's 8th grade students with one parent. They have to do some hours of community help for their graduation. We had them coming 2 years ago which was arrange by a one student's MOM Suzanne and they came over regularly every other saturday for two hours for some months. But last year we lost all contact with them. I was very sad on that. It was nice to have a great little friends around. But again this year Suzanne's other daughter Leila in 8th grade and she wants to continue with the visit. She arranging a team for every other saturday to visit us again. It is so nice of them. Thank you guys. It was so nice to see them and catch up where we left over. Kids stay some hours and girls helped me with my daughters. Boys played with Bilal then some football out side. It was nice to have them over. Same time Zarrar bring some students from the musjid and our new 4 young neighbors visited us too. So it was house full of kids. Bilal had a great time.

Abeerah had some trouble in the afternoon with a very hyper behavior all of sudden. Suzanne help me hold her down but after giving Seraquil she calm down for little while. By the evening she was back to very hyper and bouncing every where. Trashing her head to the walls and to the floor. I could not hold her without getting hurt. I tries every thing to help her but could not understand what is really bothering her. She did not sleep and just out of control most of the night. Watching your child in pain and not knowing what to do is just break you up. I am happy when she finally fall a sleep and slept for some hours. Sunday she did well till the evening but couple of hours she was again in a wild behavior. I do not know if she had swollen some thing and that causing her stomach pain. I know she is teething her molars as well. I hope she feels better soon.

Zarrar had his friends over on sunday. Kids did well. We all just stay in and relax.

This week kids are having a winter break. It is going to be a very busy week.

Keep praying for us. Your prayers and support is very much needed here and appreciated.


Bilal asked me for the maning of our family's last name. Some peoples did ask and some of you must wonder about my last name BEG. This will explain some.
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Sunday, February 10, 2008 1:53 AM CST

Update Feb 11th.

I am very thankful for your prayers. I pray to GOD to reward you so much for all the care and support you guys gives me here to keep me going and making through each day. Thank you.

After couple of stressful days of seeing Abeerah not her self, Finally we got her smiles back last night. I can not tell you how happy i felt. She is not much active yet but she is happy and making noises. I am very grateful for that. After years and years of being very hyper, always on constant moving and garbing things from every corner to chew on, i kind of became use to her like it and when she is quite and calm, it felt some thing really missing. But i am happy she is looking at me and able to sit in her chair fine. I am so happy to get hug or kiss her without getting her fingers poked in to my eyes.

Weekends always very busy here. Between feeding breakfast, lunch, dinner, cleaning, Laundry, tons of diaper changing between 4 kids, teaching Bilal and chasing Ammar over and over. I get really tired by the end of the day but i do enjoy my job. I love this relation that God had made between Mother and child. When ever i am among my kids, i feel so lucky to have my kids with me. Thank full to ALLAH to make me MOM to understand the love and care really means. No matter how your children are, They are true blessing from GOD.

Ammar is sleeping little better this week. This make a huge difference on me. I am able to get some sleep. he does get up middle of the night for little while but usually go back to sleep. For his going in to every thing and trying to touch and spread the lotions, shampoo, Hands in the toilet or sink trying to touch water is due to his sensory issues. So me and Bilal made him a bucket full of small balls and he been really enjoying it. He play with them and some time just sit on top of them in the bucket. He drag that every where with him(Very scry when he is going up or down the stairs )
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but he loves it and that keeps him from lot of other troubles but not completely. I am not that lucky yet.
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I put soda away from Ammar's reach but there is no place he can not reach.

We have neighbors move here and have 5 young kids. Me and Bilal visit them. Where i was little sad for my house after seeing a liveliness, cheers and laughs with 5 normal kids in the house, I was really happy that it will be great for Bilal to have some one to play with him but he been sad since he saw them all play together. He been really angry and pray for his brother and sisters to able to play with him just like the neighbors. It make me really sad. Even how much i try to be with him and spend time with him, i am unable to take this pain from him. I am looking for fun programs for him to join. May be join some sports.

Zahra and Khansa are doing great.

I am again looking for a lady to help me around the house. Last 3 ladies i interviewed did not went well. I am praying and hoping some one to come forward for the job soon.

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Feb 9th
First thanks to you for the nice messages left in the guest book. Your words are a great help in our struggling days.

Needs your prayers for Abeerah. She is not doing well. Thursday she had a seizure in school and another seizure at home while i was changing her diaper. Since then she is not been her self. She is hardly moving, looking around or making any noise. Today she just throw her self down and did not even want to sit at all. I tried to make her sit but she fall back on the ground again. Quite a difficult day for me. I been sad and feel pain. Every thing made me cry. I hope Abeerah feels better tomorrow.


Friday, February 1, 2008 12:52 AM CST

Feb 4th.
kids did well over the weekend. Zahra woke up with fever on Saturday but after taking medication, she was fine by afternoon. All girls were very quite and calm the whole weekend. Saturday i was expected 2 ladies for interview for the job of helping me but only one showed up and she could be perfect, if she was not looking a job only for a month because she is starting a work with American Airline next month. I am more looking for a permanent person because i hate to teach every thing to a person and get comfortable with and then they leave for an other job.

Sunday it was busy here. I had to clean up to make extra room for Zarrar's friends for super bowl gathering. After cleaning, me and Bilal went shopping for goodies for the guests while Zarrar was watching the kids but as usual when i return home, Zarrar had fallen a sleep on the sofa and Ammar made a huge mess every where. Before the game started, I took all the kids upstairs. While guys were jumping downstairs with exitment, i give girls and Ammar bath one by one. Later we all lay down together on my bed. I was so happy to have the girls so calm and paying attention to me. That is the most beautiful moment i got. I want to spend good time together but Ammar thing did not let me be with them for more than some minutes. He just never stop climbing to furniture. I had to keep running after him. If you knows Dr. sues books and movies, then you must know the thing#1 and thing#2. Bilal call Ammar thing#3 and he is exactly like those things. After putting the girls to bed, i saw the last minute game. It was great to see Giants win. I am glad that every one left happy. But we should get our foundation get checked because with their excitement of winning, our whole house was shaking.

GO GIANTS
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FEB 1st.
Busy busy and busy here like always. Finally kids and myself are feeling much better from the horrible flue. These hard days always make me be very thankful to GOD for the good days he send upon us. Bad days make me realize the value of good days. I count them as HIS blessing.
Zahra still have some runny nose and Bilal still have a little cough left. I have not gain my total strength back yet. I am happy kids are better and going to school. Which gives me some time to rest and prepare for the evening when they get back home.

Abeerah had a seizure in school on monday which i was told by nurse at the end of the day. This is the first time Abeerah had a seizure in school. Nurse said it was for very short time and she did not fall a sleep after that. It sound like the same way she had it at home about week ago. When she get back home from school, She did not had a vision and just keep staring at me like just looking through me. She did not had much balance on her right side and keep falling on her right side. Felt very uncomfortable. I had to clean her eye every few minutes. I kept her home for next day and let her sleep late. She felt much better when she woke up. We had a great day together and she gave me lot of smiles.
Last few days she had gagged a lot. Some of her behavior make me really worried about her. She have gain 3 more pound in last two weeks. I am trying to control her diet because the way her weight is going, it is getting difficult for me to carry her up and down the stairs.

Khansa doing great. She is more quite lately. Eating and drinking alright this week. She had lost 3 pound since last month and lost her one tooth this week during her teeth brushing.
she is hardly standing up and just hang in my arms when i try to make her stand. Getting her from the bus is another story. Every day i had to grab my heart when i see aids trying to get her from the bus. They almost drop her to the ground each day trying to make her stand and trying to avoid her weight on them . I ask them many time to wait till i come back after taking one girl inside but they always try to give me all 3 girls at once on my door so they can drive away fast. How can i do that when all need help to stand. Finally Zarrar had to yell at the bus driver to make him understand. As soon as wheel chair come back after repair from the airplane damage then i am going to send khansa also in the wheel chair like Abeerah does. Because i can not take the way she taken off the bus.

Zahra is well but have changing so much lately. I have very hard time taking in, her changing so fast. I did not see her smile this whole week. She cry couple of times with tears. She gets very loud and jumpy for some hours a day without taking a break between. I am not sure those are her happy moments or she is complaining. But those moments are not easy for rest of us when no one can even hear them selves. We have to shout to talk to each other. I Do enjoy her when she come and give me hug and try to sit in my lap. I really thankful for those moment and really cherish her each hug. She is growing in to a big girl now. Choke on her food every feeding at least once.

Ammar is doing so much better. I am working really hard to make his sleeping schedule right. It went really well this week. He starting to sleep through the night which is a huge accomplishment. He have not make a very big mess since i am on top of his head when he is on the move but still sneak in to small messes. Mostly these days h is going after the food and eat all snacks which is kept for school. I see a huge regress in his language which i feel stomach sick when i think of it. He is not even saying his alphabets right which he had learned age of 20 months. I call the case worker but she said there is no more therapy he can get than twice a week. Need lots of prayers for him.

Bilal is doing well. This week he been very cranky and upset on every little thing. He have hard time adjusting in the musjid. Older kids bother him because they knows he will never tell the teacher about it but he comes home with upset face that kids hates him. We started to pick him up earlier right after he get done with his lesson. I been teaching him home. I don't see its going that well. He hesitate to write. He enjoy his time with his volunteer teacher karen. I feel really sad for him and trying to find some fun things to do.

Still looking desperately for a help around the house. house work is really overwhelmed for me. I can not finish all in 24 hours. Please to people living around my area, if you can help me out here to find a lady for help as a part time job, I will really appreciate that.

Keep praying for us. Your prayers and support is very much needed here and appreciated.


Thursday, January 24, 2008 2:44 AM CST

Quick Update.
Jan 28th- Abeerah had a seizure in school. She came home not looking good at all. Her right eye been keep leaking after the seizure.
Kids are much better now and recover from flue. some runny noses and cough still going here.
I will update in details soon.

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Its been busy busy and very tiring some days. All 5 kids and myself been down with flue. No one made it to school since Monday. Taking care each one, keeping up with medications, checking temperature, gave me the feeling of a hospital here. Kids been cranky and i been with out of strength, Just dragging myself through this ugly flue thing. There should be a warning to flue "MOM, Can't get sick"or "Take one at a time". I am very happy that Zarrar been ok and making to work alright, other wise it will be 7 kids down because Zarrar is equal to 2 kids when he gets sick.
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Don't get wrong idea from this picture about Ammar been calm. He was calm alright as in this picture but only for some moments, as soon as medication kick in, he was up on his feet again jumping and destroying things here and there.


Cough, runny nose, fever, shivering, tiredness are the common symptoms between all of us. I had sever head ache all times and standing up made me really dizzy. Everything been upside down and house is just a huge mess. But Thank Allah, Today was a better day. Zarrar made his special tea with who knows what in it, which gave me lot of sweat head to toe and i was on my feet vacuuming, doing the laundry and all the kids stuff. And i cook every ones favorite dinner too. End of the day, i was able to give every one hot baths. By night, I think i over did it and went back to sick again. Now i have to wait for the morning to have Zarrar's herbal tea again when he gets back from work.
Please keep my family in your prayers.


There is something you can do today to help children and families effected by Autism. The band, Five for Fighting, is generously donating $0.49 to Autism Speaks each time this video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.

watch this video


Thursday, January 17, 2008 11:41 PM CST

Jan 20th, Update
Zahra, Ammar and my self catch a cold. It was a one very difficult day for me, taking care sick children when every bone in my body is aching, fever, very bad headache and nose non stop running. Keeping up with every one on medications, kids fever stay down but shivering and runny nose make them very cranky. Bilal and Zarrar spend a day out with his brother and sisters at their house to watch the foot ball game and return happy on GIANTS victory. Bilal complain feeling not too good before he went to bed. I hope he wakes up fresh tomorrow and not get the cold. He is not one easy child when it comes to taking medications. Weather is extremely cold here.
Keep praying that this sickness time pass soon. I can't afford to be sick. its gets really hard to keep up with every thing, specially with Ammar.

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Jan 19th, Update
Abeerah running a fever since two days now. She is very uncomfortable with her breathing due to her runny nose. Please pray for her to get better soon and other kids don't catch it.
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Thank you for stopping by here to check on girls and writing in the guest book with your kind words. Your support and prayers means a lot to us and help us make it through each day. Thank you for being here with us.

I am sorry for unable to write much here these days. I am overwhelmed with kids needs, house work, teaching Bilal and chasing after Ammar. Kids are doing great these days. I am very very thankful for girls are doing amazingly well compare to past horrible winters. I hope and pray that it stay that way.

Abeerah started some coughing/choking and gagging here and there but did not came to need of suctioning her. She did had a mild seizure two days ago. Mostly seizures she had during her sleep but this happen when she was awake and active. I was feeding Khansa when i saw her shaking and curling up. I hold her down and few second later she stopped and instead of going in to sleep she freaked out and started to cry out loud. I try to comfort her. Crying took very short time and after she got busy watching TV. Gave her seizure med and she was ok for rest of the evening. (The top main picture is few moment before the seizure)
She have been gaining weight and become very active. Non stop trying to stand up but does falls. I am always worried of her getting hurt when she is not in her chair belt in.

Khansa and Zahra are doing well. Khansa have her some crying moments but mostly she is quite and happy. Eating and drinking well this week.

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Zahra is a very sweet girl. I am so thankful for her smiles and her hugs. If she is not in the moments of trying her loudest voice and babbling with out a break OR A BREATH, she stand behind the child safety door and her eyes just follow me where ever i go. Some times she wave at me.( heart melting). She is my princess. I want to spend more time with her when she is on her calm side. I take her in the kitchen with me and sat her on the high chair to let her watch me cook. She loves giving out hugs but they will be for few second long but don't worry she comes back for another short hug.

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AMMAR.
As much i can write about him, it won't be enough to explain what i am dealing with each day. I though MPS is horrible disease but Autism is just worn me out physically and emotionally. Ammar is one very hyper boy. He have energy of 4 kids and always up to some thing to destroy. Like this weeks specials are..... he spread sugar all over on the kitchen floor emptying big jar of sugar. He took salt and sugar and mix them together. Toilet clog 2 times this week. Bilal's toys and video game destroyed. My lotion got spreader on the curtains. and many many more. He is very good at emptying my dresser's 6 drawers in no time. Two days ago, I was cleaning up the kitchen and i had to run with stomach upset, left him watching TV with sisters but when i return shortly, he was standing on top of the counter and spraying "fantastic with bleach" all over the kitchen. I try to get it and i got sprayed on my favorite shirt. Took me hours and hours to get rid of that bleach from every corner of the kitchen. He always see the moments when i am not looking or busy diaper changing. He don't sleep at night and hit me any thing he gets hold of it if i fall a sleep. And on top all he is very cute and thats how he get away with every thing.
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My this week mission......I am looking to get a custom made higher metal safety gate for the kitchen to keep Ammar out of the kitchen. Have to be atleast 5 feet tall.

I am also desperately looking for some one for help. I am in need of a baby sitter. I am spending so much time these days looking and looking. The day kids make it to school, i get so tired making them ready that can't do much after that and when they don't go to school, i have to stay with them. Can't take them with me since no heat in the van. I have not stepped out side other than throwing the garbage or putting the kids in the bus. Its been a long time since i shop. I have not done kids winter clothes shopping and each day i have really difficulty making them ready for school when i have to go through the clothes pile to find the warm clothes. Speaking of shopping, i want to say special thanks to Sister Fatima. She been an amazing help to me, delivering me soy milk regularly and that is a huge help since 4 my kids drinks soy milk and i am always running out.

Please keep praying for my family. Also need your prayers for our strength which i need it so much these days.


Wednesday, January 9, 2008 4:03 AM CST

I have not update here for some time. Speaking of Time, This is the thing i don't have these days. Trying to do every thing by myself and keep doing it but end of the day it just seems nothing get done. Keep doing laundry but by night the pile looks the same. I keep cleaning all day here and there and by night house looks as messy as it was. Keep throwing garbage out but by the end of the day it looks the same all trash can full. Each day is a same routine for me feel like i am going in a circle. Ok enough about me.
Kids are doing good these days. I am very thankful for that. Little bit of runny nose here and there. Weather got nicer from freezing cold for last couple of days.

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Abeerah is doing great these days. She is improving day by day. She started this new thing which i am not sure what is it. She been making some noises with her mouth like sucking her saliva in hard. She repeat it every few second. First I thought she is breathing air hard so I call the nurse and hospice nurse came with couple of other people and after checking she think that she might be getting her 12 year molars and thats why she suctioning her salvia. I really don't see thats could make her do that. After that they all sat down and told me that they seen great improvements in Abeerah and according to their policy, kid have to be getting worse to stay on that program so they are taking her off from the program. where i am very thankful for Abeerah's great recovery there i am sad for loosing all the benefit we receive from Hospice. Calling a nurse home was a luxury thing to me. Now taking her to doctor will be a question when i have no baby sitter these days. Medication drop off on the door was great service. They finally started to give us the diapers for her but that will no longer be coming. I hope and pray that Abeerah continue to improve so i don't need any of that stuff to worry about.

Khansa is drinking well this week. I put her on formula which is very thick and she have easy time swallowing that than milk. She still whinny and cry out loud with pain in her feet. I have to change her position couple of times at night when she get cramps in her feet sitting in same position. I talk to couple of other parents and they think putting cast will not help her for long run. I just can take watching her feet turning so fast inward and she is in so much pain.

Zahra had couple of bad nights. She woke up middle of the night and just cry out with tears and seems scared so i kept her in my room with lights on. I am not sure what bother her but she is so happy and exited on my bed and do not want to go back to sleep. Ammar also join her in jumping and we end up staying up very late. Falling a sleep just before morning, I missed the girls bus twice. So girls been spending whole a lot of time at home.

Ammar is doing same. No communication and no talking. Nothing change about him. He is still very very hyper, full of energy and always up to some thing to destroy. We stop him from one place and he just end up in other and so on. I need many eyes and couple of extra hands, just keep up with Ammar. Putting him to sleep at night is always a struggle.

Bilal is doing ok. Start complaining about every thing. Start liking to eat more which was always my problem with him that he don't eat much . I guess that is part of growing in to big boy.

Need your prayers. I am in need of them so much.




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