Quick update. Kids are home for winter break and BEG house is very busy these days. We had some visits from some friends and family members from different states. Kids keep me busy all day. But I am very much enjoying the time together. I love talking to them, playing with them, watching TV with them. I am glad that girls are doing well at this time of year which i am very thankful for. Winter is not a happy season for me. Kids do get cranky staying all day home. I have not take a step outside our door since 21st of Dec and i know how hard it becomes just staying in same routine each day. I do want to take kids out to the mall or just drive around in the van to just get them out and get some fresh air. But our van have no heating. I really get frustrated when it comes to our van. Every season change i have to wait for heat or AC to get fixed. Specially when you have very sick girls who are very sensitive to heat and cold. By the time Zarrar take it to get it fix, weather change again and need to switch it back to AC/heating and that cost a lot each time.
So far don't have any planes for any thing for rest of the vacation. New year is almost here. I hope every one have a very blessed new year. Ameen. I been thinking what we went through this year and Allah knows what 2008 is going to be. I just pray that Allah keep every one healthy and safely with their families. Ameen. I am glad that my girls are still with me. I find each day is blessing that i can spend time with my kids. But i see clock is ticking and this disease is growing faster on my sweet girls. I am just watching it helplessly day by day. My heart breaks every moment ....not able to stop the progression and i am disturb at night with night mares. Your support and prayers and my faith, thats all i have to keep going so please keep the prayers going and keep writing in the guest book. Your support is really appreciated here.
Today was a sad day for me. Its been a three years today since my mother passed away. She is missed greatly here every day. May Allah rest her in his rahmat. Ameen.
Tuesday, December 25, 2007 7:09 PM CST
I have not updated here for some time. Finding a time these days is just impossible for me. Filling kids needs one after the other one and keeping up with their different sleeping schedules to the overwhelming house work is just keeping me on my feet all day. I am tired and exhausted. Not getting enough rest, giving me head ache all the time. It could be much easier if i only have two extra sets of hands. Still looking for help/baby sitter. Who ever comes here and find out there is 4 handicap kids, they don't want to take the job. Just praying hard for myself to have more strength to do it all.
Week before holiday vacation, kids hardly made it to school. Its been really cold here. We had a snow storm and on top freezing rain and then very low temperature which turn every thing in to ice. Our front walk way and stairs been really icy. Salt melt the snow but then it turn into more ice. So i do not want to take a chance carrying the girls through that icy path and stairs. Staying them home mean no rest for me. Ammar is way too much to handle these days. I put things higher and higher but he manage to get them by placing stool over a chair and couple of book on top, it mean he will get it no matter what it takes.
We had great EID. We celebrated on Friday. I send girls to school that morning and make it to the hall for Salat. It was so nice to see many peoples that i only see them only on eids. Lots of guest over so that means we had a busy busy EID.
Happy Holidays To Every one. I hope you all have a great time with your families. Ameen
Girls are doing well. I am very thankful for that. Abeerah is amazingly keep improving day by day. She don't gagg much and able to drink couple of sips by mouth in the morning. Also able to eat soft foods just a couple of spoon by mouth once and while. She is so sweet these days . I share my day with her and she listen so nicely. I love her big brown bright eyes looking at me. I never have that much of her attention before. I am really thankful for that.
Khansa is still cry time to time with pain in her feet. It helps if she don't put any pressure on her feet. Keeping her on her chair and don't let her sit tucking her feet in, does make some difference in her pain and crying. Taping her feet also helps her some. She is having difficulty drinking. Some days are better than other. She get constipated for days.
Zahra is doing well. She is 7 now. She been babbling so much these days and so loud without taking any break in between. Some times i can't hear any one talking to me at all. Zarrar and Bilal walk out saying they can't take it. I have no choice but i can see my hearing is going away. I notice i am asking few time "say that again" talking on the phone or with some one in front of me. A STUDY shows that person can take crying kid for only 8 hours. More than that cause hearing lose. Over here i deal with noises and crying of 4 kids one by one and some times all together all day long. Zarrar thinks that since Zahra had hearing lose thats why she try to hear her self babbling louder and like that sounds. But i think there is some thing wrong. She walks in circles or walk back and forth with that too. Also not sleeping at night. Very upset when ever i look at her. I am not sure what is going on with her but it is really break my heart when ever i look at her like this.
Bilal is doing well. He is enjoying his vacation with his cousins some days here and some time their house.
Ammar is just way too much these days. I get in tears 3-4 times a day when i have to see so many things getting destroyed by him one after other. I am on my knees several time a days just cleaning mess behind him. He also keep taking his entire cloths and diaper off in every few moments. He is very hyper and getting in to every thing just so quick that even staying behind him could not stop some of the mess. I do not know what is happening to him. He is from one place to other in no time and destroying every thing he can put his hands on it. Keeping him in a child proof room is impossible and he climb out of child safety doors without any difficulty. I am unable to keep him calm and sit him still. There is so many bottles and jars get empty each day by him and spread on the floor, carper, sofa or on the walls. There is no hight or cabinet that out of his reach unless i throw it on the roof. If i go in details, this journal will be really long. He wakes up middle of the night and want me to be up too. He will try every effort to put me back my tired body on its feet again. Use his head or what ever he gets in his hand as a weapon to beat me up. He will take my blanket away, turn all the lights on. If that does not work, he will open the windows and cold freezing air.......i just have to be up. That is making me not get sleep in day and either at night time. Thats why i feel exhausted. Please pray for him. I am really stressing out finding him becoming so wild.
Wednesday, December 12, 2007 0:55 AM CST
Wednesday, Dec 12th. Abeerah is doing ok and recover well from the last seizure. Zahra these days very much babbling loud without taking any break. It is not easy to hear or understand any one else's conversation around her. I think she is trying to tell us that her Birthday is coming. My princess going to be 7 years old on DECEMBER 20th. ***HAPPY BIRTHDAY TO ZAHRA*** She is so sweet and i am hardly making each day watching her deteriorate. I hate the most is to hold her or hug her more than a few seconds. She is always on the move. I miss laying in bed with her or go through a book with her. Making her sit still is just impossible. But i am thankful for each day when i can see her smile or let her heavy hand on my back when i am not looking and have a sneaky laugh out loud. I adore her so much. She is always my sweet little princess. She teach me so much each day. I learn to be thankful for each blessing day we have given to us with family.
I want to say special thanks to Karen ( Bilal's volunteer teacher through "Butterfly program") for taking me out. I been really looking for a fabric shop for long time since Rag Shop went out of business so i can sew some special need clothes for Zahra since she is always taking her clothes and diaper off. All fabric stores i find is really far away. Kids were in school and Zarrar was with Bilal so karen drove me to Joan Fabrics. It was so nice of her and after she took me out to lunch. What a great some hours i had.
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QUICK UPDATE
Abeerah had a seizure last night. I woke up with her gagging sound at 4am on my intercom and ran to her room. Looking her like that is just heart breaking. Seizure lasted about 4 minutes. I hold her down so she don't choke on her tongue. After the seizure finished, she let her self loose and fall in deep sleep. I let her sleep. I went to check on her after an hour later because i did not hear her usual heavy breathing on my intercom which is placed right next to my bed with high volume so i can always keep my ears on the girls in case they get up middle of the night. So i went to see if she is alright. I found her really still with hand curled up and that just freak me out. I try to move her around and call her name couple of times. every thing seems moving around me then she took a deep breath. That was really scary. She does had a history of breathing low issue with all the medications she take. I thank GOD that she is ok. I always live with the fact of MPS future but never ever wants that end to come. She woke up happy. I send her to school but stay worried all day. Call the nurse at school and she said she is doing ok. When she get back home, she looked very tired. Hospice nurse came to check her and she said she is doing alright. Please pray that she continue doing ok and no more seizures.
Friday, December 7, 2007 2:09 AM CST
Thank to GOD Almighty and all of your prayers, Kids are doing well. I am very thankful for that. Since its really cold here for some days, i been worried and praying that no one get sick. Trying to keep them warm and putting layers when send them to school. Monday, Zahra and Ammar came home looking down. Ammar cried all night because he hates when his nose is runny and keep garbing my hand and taking toward his nose to tell me clean this. So cute. Tuesday, I kept every one home from school since it was very cold out. Hospice nurse came and give Abeerah a flue shot. I hope this will help her to have a better winter. Now i am thinking, how can i get all others to have a flu shots as well and kids Dr. only there in the evening hours when Zarrar is at work. Still looking for babysitter and help. By night i get feel exhausted and just lucky if i can get some rest before next busy day start. I never felt this way before, and always keep going without complaining. I guess i am getting old. These worries, mental and physical stress making me old fast.
Khansa's crying and winning still going on and off. Her feet really bothering her a lot and recommended by Orthopedic to put a cast on them for two weeks. We are thinking seriously on that one and how I will manage her and how it will help her in a long run. She is hardly able to stand. Please keep praying for our family.
Saturday, December 1, 2007 12:36 AM CST
December 3rd. Alright every one. Fasten your seat belts, because i am so full of emotions right now. What a day. I should start from Little back. Saturday! Woke up happy because its a day off from rushing my self making my 4 kids ready for school before 7:30am. Hard part which i hate the most on school days, waking up my sleeping princesses. So saturday, i don't wake no one up. Khansa is just always been a first one to be up. I take my time brushing their teeth and bring them down stairs one stair at a time. Then i take a break and get coffee for my self and Barney and glass of milk for who ever is down with me. Then i get back to bring the other girl and so on. Ammar, he should sleep as much possible because once he is up, i can't sit down.
Saturday went well other than usual stuff like cooking, cleaning feeding, diaper changing, laundry, folding and ironing(1- 2 from the top of the pile so zarrar can make it to work), chasing Ammar, more feeding and more diaper changing and more cleaning and chasing Ammar. Oh and chasing Ammar and cleaning his mess behind. Did i mention Chasing Ammar??? Zarrar rented Shrek 3 for kids and i watch it with my 5 kids. We all eat pop corn. (poor Abeerah try so hard to get it, that part always melt my heart that she can not eat the stuff we all eat). I try to give her the tast of salty butter and she was happy. We all went to bed late.
Sunday I wish i could sleep all day on sunday but reality of being a Mother comes in front which is 7 days a week job and i love it. It was snowing and look so beautiful. Bring girls one by one downstairs and taking my time enjoying time with them. Till breakfast, its all went great. Then Ammar gets on his missions. Pour this, write here climb there. Throw this. Pour juice down the drain. Man!!!! this tiny creature moves like some one just put new energizer batteries in him.. I try to clean Bilal's room. Actually went up to help him to clean his room but guess who end up doing it all since his arm and legs hurts???? BOY!!! Zarrar's friend and then his family came over. I was downstairs with the guests and my 7th sense felt some thing in the bath room. I just ran up and i was just on time to stop the water from dripping on top of the guest in the living room which is right under the bathroom. Water was pouring out the toilet because it was stuffed with toilet papers and flushed by Ammar. He have not done this kind of stuff in a while so i thought he move on to other level. But he was just making a bigger plans in his head. Well clean up. Take care the guests, then feeding cleaning and all that. Bilal's english teacher came and he got busy. I was with girls playing and making them ready for bed, Ammar disappeared and i went to look for him as soon i notice he escape from my sight, But he is faster than me. it was too late, Ammar had written on the sofa with DVD permanent marker. Red Ammar's signature all over the beige sofa. Well try my best to clean that but not much could come off. I bring girls' upstair and give them baths one by one. Then gave Ammr bath. He is alright getting wet till waist down. But as soon as water touch his head or shoulders, his screams can be heard far far away. After putting every one to bed, i went down stairs to clean up the kitchen and vacuum the girls room. Their room have to be really clean because they look for any tiny bit of garbage to put in their mouth. i left Ammar lying on bed with Bilal. Vacuum down stairs and clean the kitchen. When i get back, Ammar was jumping on the bed. Ok, that is good but when i turn the light on in the bathroom. it was a disaster. All shampoos and conditioner was poured on the floor and all over the tub. And toilet was stuffed with entire roll of last toilet paper and mashed with water and it was about to spill out the toilet which become clog. It was 1:00 am and i was tired but started to clean the bath room. Toilet was totally clogged. I am on my hands and knees taking every piece of toilet paper or in other word gooey stuff out, plunging and in the end using plumber's snake. Nothing was working. Only bathroom in the house and that is clogged. Zarrar will freak out if i call him at work and he will blame me for not keeping an eye on him. I sat next to the toilet and cry out all my pains. I decided thats is it, i will give Ammar away. My sister been after me to adopt him. He is just don't stop going in to things, no matter what i do. He is not learning any thing and no sign of improvements happening with him. Why my prayers not going any where. Why Allh is not looking down at me. What i am really doing wrong??? I was so sad for my baby. Then i took a deep breath, press my emotion down and try again and again the plumber's snake and finally toilet was fixed. I thank Allah for that. Clean up and went to bed at 3:30am. Ammar was sleeping so peacefully next to me and looks so cute and i just kiss him after all that and on top felt so bad how i can even think of giving him away. He is my baby and i love him dearly. I always wonder what GOD have put in MOM's heart that melt so easy????
As I watch you sleeping, I can't imagine how my life would be without you. Even through the hard times I'd be lost without you. As I watch you sleeping, all of my worries seem to melt away. I know that no matter what happens, together we can make it through another day.
Thanks to all for keep checking back here and singing the guest book. Your support means a lot to us. Thank you.
I have not update here for some days. These days i don't even know when morning starts and when night falls. I get on my feet early in the morning and stay on it till late night. Mentally overwhelming as it is but its been physically lot to handle since carmen had left. I am swamp with kids needs, cooking, cleaning, never ending laundry, teaching Bilal at home and chasing after Ammar almost every 5 minute. My day start 6am and ends at 2-3am. But i am very thankful that kids are doing well for some days.
I hope every one had a great Thanksgiving. We had such a great thanksgiving weekend. To me, every day is thanksgiving because we have so much to be thankful for. This year first time in a LONG time dinner was not at our house. My husband's sister bought a big house in PA, every one decided to go there this year. It was nice two days spend with family. We had a great turkey dinner. Girls' mostly stayed tight in their wheel chairs during the day time but at night we had given a empty room with carpeted floor for our family. It was really safe for the girls to able to walk around there and it was upstair in the end so no one could get disturb at night with my kids night party time noises. Girls don't sleep well at new place. They jump and walk around between sleeping ones. Zahra early bird had a great fun playing and twisting ears on sleeping people and waking them up early.
Abeerah have some gagging and choking going on which get worse at night. Her reflux med seems not working well. She is really sweet. She love when i talk to her and play with her and she been giving me the cutest smiles. I love her big brown eyes when they shine with happiness. I could not see that before since she is constantly on a move. I wish i just can pause the moments. She gets irritated when her diaper is wet. She is cooperate much better when i change her than ever before. It seems like she do understand some ways since she is taking the Seraquel.
Khansa is not doing too well these days. She cry time to time and when she is not crying, she wines. We trying every thing we can to help. I don't know what is bothering her this time. She is continuously on pain, reflux and behavior medications. Some days she don't cry at all but some times she just cry all day. She do drink a lot less now and started to constipated more. Adding more vegetables did helped her. some time i think, she cry because she get hungry quickly and i did try to feed her more often which did help stop her from crying. But some times i think its her reflux that bother her. I wish they could give any hint or some kind of sign to help us understand what is bothering them. I am taking her to get her teeth checked out on monday.
Zahra is doing great. She is such a doll. She bring so much liveliness in the house. She love people. and wants to hug any one is cuddly. Poor Abeerah's nurse. We better keep poor lady away from Zahra. She comes for 2 hours a week but zahra do not stop hugging her. BOLLAY BOLLAY BOLLAY, thats what we hear most of the day. She can say at least 15 times in one breath. When she get tired from jumping around and non stop walking in circles in that small room then she sit down and say ALLAH ALLAH ALLAH, which is also about 15 times in one breath.
Ammar, I don't know how i will stop if once i start writing about him so i don't want to start here. Only thing i want to warn you if he is coming over to your house. HIDE ALL THE LIQUIDS IN BOTTLES IN YOUR HOUSE(specially medications). He is on a mission pouring every kind of liquid around the house, down the drain. At least i know where to find him these day. Front of the kitchen sink or got to be the bathroom sink.
Bilal is doing well. Have some of his moments which is a lot. He was going to musjid for Quran and school studies but each day he come home with out any work so he is back home again. He do ok with math and science but hate when it comes to writing. We hire a english teacher for him. He also work with Karen, who he love working with all kind of projects and story writing. Also have an art teacher come to the house. He is happy when every thing goes his ways. He is a great help in so many ways. I am so thankful for my little helper.
I am in need of a help/baby sitter. If any one knows any one who can do the job. Please let me know. Keep praying for my family.
Wednesday, November 21, 2007 1:58 PM CST
Here is what you all been waiting for. Details of our trip to Florida to Disney world from MAKE-A-WISH. It was a great trip. Lots of work for me thou but it was fun. Its really nice to have a little vacation some times. At Disney so much to see. We did not see every thing there but at least tried to visit the each park.
DAY 1 (NOV 13th) Stay up overnight to make sure i don't miss our flight and every thing ready to go. start waking the kids up at 6am and we were out the door at 9am in a big van which came to pick us up at our door. Every thing went well with every thing at the airport. We got the seats from last two rows in the end even we put the request ahead for giving us better seat closer to the door. That was bad. I had to carry each one of the girl all the way at the end of the plane. Ammar give a really hard time all the way to Florida. Abeerah wheel chair came back all messed up and bended. A lady from the KGTW was waiting for us with a sign of Welcome Abeerah. She help us with renting the car and we were on our way to GIVE KIDS THE WORLD VILLAGE. After getting freshen up and changing kids diapers and stuff we went to walk around the village. Zarrar went for presentation for our trip. I took the kids and took a pictures with Sponge Bob and eat lot of ice cream. Bilal loved the fact he can eat as much ice cream he wants. Met lots of families there. Late we came back to our villa and order pizza(all free). Me and Zarrar had a fever and also throat trouble.
Day 2 (NOV 14th) Every one slept late with all the tirdness of the plane ride. After feeding every one and making them ready, we head to the Animal Kingdome. One girls cam eto help us from the village to push stroller. We went to see Lion King show. It was a great show. They pull BIlal out from his seat and he was the part of the show. In the end Tamoon shake his hand and said he is the best kid. That make him really happy. Zarrar took Bilal on the dino rides and i took the girls to see Nemo show. We eat pizza there. Meet with Lilo and Stitch and see some more attractions and then took MONORAIL and head to Magical Kingdome. There we were right on time for the Disney parade and after enjoy the fireworks. After Fireworks finished, we face a huge huge crowed getting out the park and it took an hour to get to the monorail to get back to the parking lot. Reach home late and after feeding every one and medications, went to bed.
Day 3 (NOV 15th) Woke up early and plan to go to Sea World early. While i was making my morning prayer, Zarrar call me that Abeerah having a seizure during sleep. We both hold her down. when it did not stop at 3 minutes, i ran and get med and open it but she stop having seizure then and went in deep sleep. Zarrar took Bilal for breakfast and after that they went for horse back riding and train ride. By after noon Abeerah woke up and looks good. We all get ready and went to "Sea World" We saw dolphin show. Saw sharks, penguins and all kind of fish. Then we eat in a nice resturant with sharks swimming next to us. That was scarry. After we went to see a whale(shamu) show. Amazing show. It was started to get dark so we ahead home. Rest of the evening we enjoy at the Villalge and eat ice cream.
Oh i forgot to mention that i had lost my voice totally and was unable to speak at all in first three days. It was really hard when it comes to calling loud Ammar who running away or Bilal when he doing some thing silly. And when some one ask about the girls and i have to point to my throat( they must think whole family is handicaped). Also Khansa did not feel good on our entire trip. She wine a lot time to time. I am unable to understand what could be bothering her this time.
Day 4(NOV 16th) Start a day early. It was a cold day there. We need the jackets for going out. We went to Universal Studios. Lee was with us helping us pushing the stroller and guiding us where to go which was a great help. without her we could be lost there. We saw there Barney show. I can't describe the Zahra and Ammar's happiy faces watching real Barney. Also Abeerah was clapping too. After the show, Barney came to meet our family. Then we went tos ee animal show. Amazing show. They call Bilal on the stage and make him part of the show. After the show we meet the animals and took picture with hollywood's famous Dog. Zarrar and Bilal wen on different rides while i feed and diaper change the girls and Ammar. We all saw 4D Shrek Show wearing special glasses. Great show it was. From there we went to the "Adventure Land" and meet the spider man and after spider man ride. See Jerresic park. Zarrar and Bilal like always enjoyed the different rides. It got dark and colder so we came back and enjoy at the Village rest of the evening.
Day 5(NOV 17th) It always take me 2 hours to make kids ready to be out the door with my only two hands. I could do faster if i grow two more hands. We went for breakfast at the gingerbread house and after that we ahead to put Abeerah's STAR on the Magic castle with all other wish kids' stars. Then we made Pillows for each one of our kids from the pillow factory. That was fun. Wait for our guide and help and head to MGM. It was a great day. We saw "Little Mermaid show with special effects. Then we saw Beauty and the Beast show. All girls was so engage so well watching the entire show. That is my favorite Disney movie so i really enjoy watching it. Then we enjoy the Disney holiday parade. Zahra love the whole parade.
Disney Holiday Parade
After parade we went to Epcot because guys was getting bored watching the princesses. We took Monorail which is an amazing ride it self. There Bilal and Zarrar went to different rides. While i wait out side and feed kids. In the end we all went on Nemo ride. It was fun sitting in the shells. Came back at Our Village fast for Abeerah's birthday celebration with Mayer Clayton. They call Abeerah and other kids having birthday and sing them Happy Birthday and we all enjoy eating cake. Also went on train ride and see couple of other attraction on the Village. Eat ice cream the last time there because it was our last night there. Came back at the villa. After putting kids to sleep, i wash and fold the laundry and pack up through half of the night making every thing ready to go, then went to bed.
Day 6(NOV 18th) Start day early to make kids ready to go on the plane. By 10.30am we left the Village and By 11am we were at the airport. But there we find our our flight is late. At 3:pm our plane flew from the Florida airport. I am not going in detail here about the horrible plane ride.
We reach home by 7:30 pm by a limo. There is no place like home.
Monday, November 19, 2007 3:26 PM CST
With all your prayers we reached home safely yesterday night. Our plane departured 2 hour late from Florida then on landing we had to fly around in the air 1/2 hour more. Abeerah's wheel chair came back broken again and i had a hard time pushing it to get out the airport. A limo was waiting for us at the airport to pick us up. We all feel happy to be home. We had a great time in Florida. i will update soon in details.
HAPPY BIRTHDAY TO ABEERAH She turn 11 years old today.
Friday, November 16, 2007 10:15 AM CST
Just a quick update here to let all of you know that we are in Florida and having a great time. First couple of days was not went so great since kids, my self and Zarrar all got sick due to weather change. Its warm up here and we are loving it here. "Give Kids the World Village" is absolutely beautiful. It is just amazing how they treat their guests.
Abeerah had a seizure Thursday morning and did not feel good at all so we had to delay our plans. She is doing better now. I will update in details soon and share a lot of pictures that we took here. We do not have internet at our suite and I have to go to the main building (house of hearts). Keep praying for us to have a safe return on Sunday.
Saturday, November 09, 2007 1:27 AM CST
November 10th. Thank Allah, Zahra is doing good today. We had an emergency visit with dentist for her and her tooth was pulled out which did not looked was going any where and behind, there was her new tooth started to show. I am glad that is taken care off. Thanks to Dr. Jackson. With med, she is doing great and calm today. I am so thankful for that. She is still non stop taking her diaper off almost like a 100 times a day and leave mess to clean for me. I am using tapes to keep her pants and shirt to stay attached and no room to put her hand in her diaper until i am done sewing her special need clothes.
Thank you all for stopping by. Your prayers and support means a lot to us. This last some days been so much to deal with emotionally and physically for me. Kids been sick one after other. Abeerah had really rough some days with hight fever and coughing, choking and gagging. She got better and Zahra catch the fever. She been not her self lately and its been killing me to see so much changing in her. Her not sleeping at night, being very hyper and violent keep increasing. With fever on top make thing unmanageable for me. I was trying every thing to keep her calm and happy. She keep chewing on her lips and twisting her tongue around. Do not want to eat any thing. Today i notice her lips and mouth are swollen, I though may be it happen with all the bitting she been doing on her lips. I check her teeth, and she have swelling on her one baby tooth. She might having an infection and i think, all the disturbance and her behavior is due to that. I will take her to the dentist tomorrow first thing to help my poor baby pain free. My heart just can't take the suffering of these poor girls. If they could talk, things could be much easier for us to get help for them faster but here we always have to play guessing game. That is just stinks. MPS is a horrible disease. (Warning: Disturbing Video)
No one made it to school almost of this whole week except Bilal. This Thursday and Friday is teacher's conference also give them two days off and Monday is also off again for veterans day.
I am really worried since kIds are not doing well and we had planned to take a trip to "Give Kids the world" from MAKE A WISH foundation for Abeerah's wish this Tuesday. I am praying hard that kids get well soon and we can have good time on our trip. It took us years to accepted to go. I had put too much effort to convince my husband to go with us and he finally able to take a week off from work which was a big issue. I have not started to pack yet being a nurse 24 hours with all the sickness going around here. We will be leaving on this Tuesday morning. We were allowed to take an extra person with us for help. I been looking around and no one is available to go with us. Finally my cousin decided that she will go. Well we bought her ticket from Indiana to here so she can go with us. Every thing is set and ready to go for her and now she decide that she is not going. That made me so mad. Now i am worried how we will able to manage it all. Specially pushing 4 strollers with only two pair of hands. I didn't even go on the subject of plane ride and the kids yet. I just hope we have a safe trip and have a great time. I will add all about our vacation and pictures. Please keep checking back here.
Monday, November 5, 2007 10:43 AM CST
I wish I can write here that every thing is going great here but it's not. Abeerah is not doing well for some days. She is having a lot of secretion going on. She keep coughing it up during the day time. By evening it get worst and at night she choke up. Also when she first wake up, she choke on her saliva. Her G tube is leaking around the stomach area and I have to keep changing the bandages. She been missing school. I am worry about her. I keep in touch with Hospice and nurse will come and check her today. I know winter is not a good time for MPS kids. I am thinking to keep her home for these coming cold months. Please keep her in your prayers.
Khansa is also very much whine all day. She is having joints pain and can't move much of her self. She do not like it at all. She wants to get up her own and move around. Dr put her on Seraquil and pain medication. But pain med only work for short time.
Zahra is having a trouble sleeping at night. She is changing fast and this fact is just hurt so much to see how much she has changed in few months. This MPS is just taking over on my sweet girls so fast.
Ammar and Bilal been sick. Now both have bad cough left. Bilal refuse to take medication at all, I try every way, but his answer is no and he hates medicine. If I force him to take it, he end up throwing all up. I am just praying he gets better soon.
This weekend was extremely busy for me. Never finishing days started very early taking care each one. Carmen quit again and now i am doing all my own from laundry to never ending cleaning. I hope i can find some one for babysitting soon since i have girls' appointments coming up soon.
Tuesday, October 30, 2007 10:14 AM CDT
OCTOBER 28th. Happy Birthday to Ammar. My baby turn 4 years old and it just seems like yesterday when nurse hand him in my arms and nurses all around start calling him miracle baby. All staff came up to me one by one to say congratulations to me and tell me how lucky I am to have him. And I thank GOD looking at my miracle baby who every one thought might not make it.
I am in tears since morning.
I remember when we bring him home from the hospital. I know how much happiness he had brought to our house. He brought a little rest to our worry full life with the girls' diagnosis and the stem cell transplant trip to duke. I was happy that Bilal will have a brother to play with. If something happen to us with girls' painful situation, then they will have each other. His name "Ammar" was given to him since that was the name his grandparent have thought for our boy which means " Long-living, builder" And I gave him middle name after my father' s name "Saeed" which means "Happy" since we were very happy to have him.
All the worries just pause for little while even tho pain was still there but I was busy with new baby. But when he was 6 month old, my mother in law mention that my baby head is bigger than his body and since that day my worries, my tears and my prayers started for him. I start looking every way if that is true and ask every one I meet if they think if his head is big and what could go wrong having a big head. I guess GOD have some different plans for me. My three girls pains and suffering was not enough. Year old Ammar, did not talk, my worries increase, my tears got bigger and my prayers got harder but at age 1 and half he diagnose with Autism. I keep telling myself that it is ok, there is a hope and trying to do all we can to help him but with time passing and way things moving, my hopes are just fading away. In pass couple of months, I can't describe how I feel inside worrying about him. Just broken in to zillion pieces but still trying my best and keep hoping and keep going. He is way way too much to handle these days. Undress him self in no time. Gets in to EVERY THING. Make me clean so much and have no communication, sleeping trouble at night and use his head as a weapon to beat me up when he need something and can't tell. But he is cute as can be and we love him dearly. He is our heart. Zarrar is crazy about him. I tell myself each day that my prayers don't come true because GOD made him this way and HE like him this way, so I have to be thankful what he gave me and accept him like the way he is.
I am very thankful for girls did well last week. Abeerah keep amazing us each day. She looking better and her coughing is a lot less this week and she feeling stronger. Try to stand and walk. I am greatly thank full for this.
All girls' are grown big and grown out of their sizes. Abeerah and Khansa have not grown and been wearing the same size for last 3 years. That means I have to go shopping. Bilal is doing good. Very smart but little temper boy. Get angry quickly and want every thing have to goes around him. Zarrar and Bilal are so much a like in every way. That is kind of scary. Bilal is not feeling good and have a bad cough. Still have no clue when we can start the construction for the ramp and the bath room downstairs. But my back is giving up on me since girls are getting heavy and it scares me think of carry them to the bus when all the snow on the stairs in winter time.
Last week an amazing thing happened. Zarrar and I was searching for some information on sanfilippo syndrome and we fined a site about our daughters on my space, which we have no idea about it. Page looks nice but question was who made it. We look and look but did not understand who could do it. I send some of my friends emails if they knew or they made the page. Later I find out that I did sign up with an organization while ago who connect special children with website. They did a great job with the page. Check it out. SANFILIPPO SYNDROME AWARENESS- PRAY FOR THESE KIDS
About Ammar's birthday party. I spend lot of time with Ammar. We read books and play with his toys. I was not planing to do any thing for birthday but when Zarrar came home and he wanted Ammar to have some cake because we know Ammar loves eating cake so he invited his family over for some cake and tea. I cook chinese food which I was already making for dinner Just add more for every one and order pizza for kids. It was nice little get together for Ammar. He loved the cake and want to eat the whole cake. Every one had a good time. I went to bed late after all the cleaning.
October 29th Bilal, Abeerah and Zahra was not feeling too good. Bilal and Abeerah had a fever and rest of them catch cough . So kids stayed home from school. That means a busy day for me. Abeerah did not look good all day. I was really worried that she might have a seizure since her eyes keep twitching and turning upward. She had lot of coughing and choking going on. But nice thing she smiles when I talk to her. Zahra took her diaper off many times. I put my sewing machine back to action to sew the jumpers that I use to sew for girls when they were young and non stop taking their diapers off leaving for me lot to clean. Nothing did help to stop them. So I put my head together and my invention of one piece jumper with Zipper in the back save my life. Now Zahra is back doing it again. I hope I finish one soon to reduce some of my worries. By evening every one feel better but Bilal. We have a big problem putting medications in him. He threw them back out. I hope he feels better soon.
Thanks for stopping by to check on us. Need tons of prayers here so keep us in your prayer.
Monday, October 22, 2007 2:00 PM CDT
Girls did much better this week compare to last week. Still lot of down going on with Khansa. She is not doing that well. Chocking on food. Not drinking well and crying and winning a lot. Her appointment is 2 weeks away but orthopedic Dr. checked her at school last Friday. He think she have to put a cast on her feet because they are turning inward and giving her lot of pain and difficulty in standing and falling a lot in trying to stand up. She wears braces on her feet at school. We also keep putting a tape around her feet so it help her from craps. I am keeping her in her chair mostly so she unable to tuck her feet in to sit on them which cause her more pain in her feet. Also School Dr. think that she is having a reflux problem and have to be back on the medication again. Abeerah is doing well. Still coughing to clear her throat from choking. It seems like her reflux is getting worsen because she is throwing liquid out when she cough up. Over all she is more active and getting stronger. She is trying her best to stand up and take some steps. Sleeping at night is still a issue. She takes only few hours naps and then up and active again.
Zahra is cute as button. She make me always smile with her liveliness. She love people talk to her and give her attention. If you turn your back on her, i warn you, you will get her very heavy duty smack on your back and she will laugh on it.
Ammar... VERY BUSY GUY. Some days i just get in to tears with his non stop going in to every thing he can get hold of. Kitchen and bathroom are his big target areas. I stop him from some thing and he gets in to some thing else by the time i done cleaning the first one. And there is no place in this house is out of his reach. Right now we are having a battle between Ammar and Bilal. Ammar destroyed couple of Bilal's art projects that he made with his art teacher and now he is all mad with him. He always get in trouble not locking the bathroom door after using it and Ammar, who is just waiting for that, gets in it. So Bilal is having a moments of not likeing his brother. I start again potty training Ammar. Its a quite a work out for me. He start going pee on the toilet but one drop at a time and then i have to tell him "DO MORE" then he will let go another drop Then i tell him More and............ And its go on till i think its enough pee for this time. I am happy that he is got this far at least than screaming as soon as i sit him on the toilet before.
Bilal start going to Musjid from last week. He goes from 8:30am to 6:00pm. Come home for lunch in between. They have a teacher for Math and science. English i do it at home with him. He is loving his time with Karen who comes on Friday for couple of hours and do different projects with him. Also he have art taecher come home and a new teacher will be coming soon for him for his writing skills. I am so worried about him. He gets angry very quickly theses days and very sensitive to any body say anything to him. We are trying to do our best and praying, May Allah help us raise him well. Ameen.
This weekend we had a visit from our good friends from Lawrenceville and they bring us gifts and cards made by girl scouts. I love the EID card made by little girls. I was really nice of them to think of my daughters. Thank you girls scout team. I finally made it to the Dr. , Actually Dermatologist for crazy itching on my leg problem which i can't stop scratching till it bleed. She think i have dry skin. I don't really believe her since i had used all kind of lotions to make it stop itching. I have to go back in 2 week after using Vaseline 5 times a day. UHHHH
Thank you all for checking on us. We appreciate your support and prayers.
Tuesday, October 16, 2007 3:09 AM CDT
Update Wednesday, 8:30am Abeerah had a seizure last night at 1:am. I heard Zahra's caughing on the intercome and went to check on her when i find Abeerah was having seizure face down on her bed. I think that is why i did not hear her at all. I am not sure how long she been like that but after i hold her down, it lasted about 2 and half minutes. Then she fall back to sleep. By 4:00am she woke up and she was very active and happy. I pray for no more seizures. keep her in your prayers.
Also one of our close MPS family needs your prayers today. They lost their daughter yesterday. Sara was 13 and had Sanfilippo, type A. It happen so fast and unexpected.
Thank you all for visiting here and leaving nice messages. Your support makes a big difference in our struggle.
Last week been very busy here. All 5 kids kept me on my toes. On top last days of Ramadan and getting ready for EID............
Keeping up with Khansa been crying and whinny most of the day. Trying to figure out what is bothering her. I came to understand that her feet and joint causing a pain. Her joints locking up lot more than before. She is taking less liquid which cause her constipation. That also bother her. Abeerah been sick and stayed home from school almost whole week last week and her increasing of coughing up all day and night and hard to keep her liquids down in her stomach. Zahra's non stop taking her diaper and clothing off which she had stop for while but now she is back with that again and make me shampoo the room more often.... Ammar's going in to every thing and leaving huge mess for me one after an others. I am trying to learn to keep up with his speed. Bilal's studying at home and dealing with his bad moods of not going out to places where he wants to go due to my busy time in Ramadan. This list can go on lot longer but i will stop here. Weather changing gives every one runny nose here.
Last weekend i call Carmen over and she spend two nights in a row with kids so i could able to attend Shabina at our masjid from 9:pm tp 6:am. I really enjoyed my two beautiful nights. Lots of prayers i had made. I am thankfull to Carmen for her help and I am very much thank full to "Isabel Jurado Foundation" who grant us extra hours of help with Carmen.
I make my self very busy with all the extra free time i had...LOL. I have started a small online traditional clothing business with some one's investment to help out Zarrar with the growing medical bills and the construction of the handy cape addition we are in need to build for the girls. Also help out my young siblings with their school fees. But so far it is not really working out and i am so much nervous about it. I am really praying for this to work out. www.ModestyStyles.com
This Friday night i took all the kids and went to see the moon sighting. I did not spot the moon this time but later in CA i got confirm of sighting the moon so we celebrate Eid on saturday. I spend all night preparing girls needs so i can make them all ready on time to make it to the Eid hall before 7:30am but Abeerah did not felt good and it was not good to take them out in cold. Bilal, Ammar, Zarrar and i attend the Salat. when we reach home, i get busy with girls and Ammar end up taking a bath in the freezing rain water gathered in his small pool out side. After putting warm clothing on him, make him warm and trying to put him to take a nape where Zarrar, Bilal and Abeerah was sleeping. I do not know what happened but i woke up when Ammar pulling my shirt. I grab him and he was soaking wet head to toe, Bells start ringing in my head that some thing wrong had happen. I am running up an down the stairs, what he destroyed this time??????
I tell you one thing, life is a precious thing and we should be thank full each moment we got because we never know what is ahead for us. I am very thank full that i am alive today. Ok back to the story ...I discover the basement door open and i ran down to check what did he do there. I found the fish tank half empty and huge water puddle is on the ground and all kind of objects are thrown in the fish tank. Thinking of poor fish, i just try to put my hand in the water to take all kind of toys and bottles out and i got electrocuted when i was standing in the water with bare feet. I am not sure how long i was stuck passing electric through me but i see Ammar coming to me to grab me when i felt the force and thrown a side. I am so thankful to be alive. But my whole right side felt really weak. I hug my kids one by one and be happy to be with them again. Zarrar shut the power off and discover there was tank heater is broken in the water and Ammar was ok because he was standing on the chair with plastic wheels with rubber on it. But i was on the ground with bare foot to complete the circuit. I am thankfull thinking, things could be worse here.
In the evening Zarrar went to work. Kids woke up and all started to cry and fuss. So i make every one ready (which always take me 2 hours atleast). Took all my cranky kids out to Target to buy a gift for Bilal for eid and buy some clothes for Zarrar's work. which he needed really badly and only living with two pants wear one and wash one basis. I was leaving it on him to buy his own clothes for once but i think some things are not changing here. Girls was so happy to be out. But i was not comfortable to have all the staring by every one who walk by us. Abeerah lost her shoe there, We look and look but at last we annouced it and some nice guy bring it to us. We left the store when the lady get tired of announcing, "store closing in 5 minutes". My right arm felt numb and i still drag myself to taking the wheel chairs out and putting back in and taking the girls out, just to be thankful for the moments i can have with them. Coming back we stop at my sister in law's house with some donuts to say Happy EID to them. Then came back home and play with Bilal's toys and help Ammar with his new books after putting the girls to bed.
SUNDAY I felt weak and pain in my arm. My mouth taste was metallic since yesterday and i don't feel too good. Zarrar took Bilal to his sister's house for the eid party early. I took my time making rest of the kids ready. I reach there by 2:pm. we had a great time. There was lots of food and games. I stay busy as usual with keeping up with girls feeding and running after Ammar. Play some of the games. I left there when Abeerah and Khansa started to get cranky. Bilal had a great time. I left him there since there was more games going on. Later he came home but his cousin talk me in to spending night with him at their house.
Monday. Zahra and Khansa woke up feeling sick. Abeerah was sleeping tight. So i call the bus for girls not going to school today. Ammar went to school but he had a half day at school. Evening was busy with kids. Later i went to pick up Bilal from his cousin's house and we all just stay home rest of the evening. Bilal play with his eid toys. I did some cleaning here and there. Carmen came late in the evening for help. I went out to pick up kids medications while she watch every one. I am feeling lot of weakness in my self and hopfully get my self to a Doctor soon. Please pray for me.
Saturday, October 13, 2007 6:38 PM CDT
May the Mercy & Blessing's of the Almighty be with you, your family, and friends during this auspicious Eid Blessings Day and continue to be always, and May Allah (swt) have accepted all our prayers/duas during this blessed month of Ramadan, insha'Allah (God Willing).
May your year ahead continue to be filled with a healthy, wealthy, and prosperity life, and May you have a Joyous and Spirited Eid Mubarak (Blessings) day with all your dear ones, including people of all faiths and humanity, filled with Love, Peace, and Happiness .... Ameen
Kids are not doing well. I will update later on so please check back soon. Keep praying for our family. Your support is our strength.
Friday, October 5, 2007 3:07 AM CDT
By the grace of Allah, girls are doing well so far this week other than Abeerah having some episodes of coughing up bad regard to clear her throat which is good as long she cough it up the saliva than choke on it. Khansa had moments of winning every day. She just sit and make this continue crying noise every day. I do not know what is bothering her. Pain medication help her for some hours. I figure its her joints because she having lot of stiffness in her joints and joints lock at one place if she don't move for more than 10 minutes which is happening a lot. At night i have to change her position at least two times while she is sleeping. Zahra having a runny nose this week and seems like not going any where so far. She also have bad allergies in the morning. Sneezing non stop, runny nose and watery eyes just make her miserable and i know how she feel when i am dealing with allergies too.
Ammar is continuing with his hyperactive, not sleeping at night and making me clean a lot more than i want to each day. He have regress so much which kills me accepting it. He is too much to handel boy. Like yesterday i had to wash him down throughly 4 times. First he get in the bath room and spread shampoo and Bilal's bubble bath all over the bath room including sink, toilet, floor and some tub. It took me long time to clean it up when those bubbles seems like not want to flush down the drain. And after cleaning the floor many time, its still slippery there. Then hour later he was watching barney with girls and ending up putting desiten( rash cream) all over on his legs, some area on the carpet and on Abeerah's hair while she was sleeping. Clean that up and kept him with me in the kitchen while cooking. But within two second, he dump the salt and paper all over the counter. And at night he got the mildew proof( which is mostly bleach) spray from the bathroom and spray on the sofa while i was making girls to wash up before bed. I am glad i catch him quickly and wash down the effected area but his new clothes and rug area got color change.
I am trying Bilal to cooperate with me to keep an eye on him and locking the bath room after he use it but he is very upset with Ammar since he empty his bubble bath bottle which he have to wait till i go out again to get him other one.
Keeping up with every thing make my days extremely busy. I feel like i am going in a circle and there is no stop to it. My day start at 4:30am. After saher and salat, i start making the girls ready for school at 6:30am. Their bus comes 7:30am and Ammar's bus comes 7:40am. then i teach Bilal at home. Its a good day if all girls make it to school that way i can take Bilal out to places. By 2:30pm kids started to come home and i get busy and its goes on till 1:00am or some time 3:00am in trying to put Ammar to bed.
This week since girls are making to school i was able to get out. We visit Ammar's school and meet his new case worker and teacher. We talk about Ammar 's regression with his words and communication. We visit architect also and finally he understand what we need to build. So soon we will have a drawing. One step forward to having a handy cap accessible area. I hope this can move faster because my back is giving up on me with all the carrying i have to do each day. We also finally make it to the library and return all the books which we have it here over 3 months. Quite late fee to pay .
We also had a detail meeting with Ammar's case worker on thursday to go over with Ammar's IEP which end up having by the busy street because school fire alarm keep going on. She gave us a lot of hope to work hard with Ammar's progress and make up the summer and not quitting the school like other 3 case workers did within a year. I will see how he do within a month with their hard work and new speech therapist.
Some days left to Ramadan to be over. Last days of Ramadan is very busy. I hope every one is getting ready for EID.
Saturday, September 29, 2007 9:53 AM CDT
Needless to say its busy here since it is always busy here but month of Ramadan made it extra busy. I don't even think there is 24 hours in a day for me. Girls are doing much better now thanks to all loving, beautiful, GOD's people out there praying for my family. Speaking of beautiful people i want say special thanks and lots of duas for Fatima who took care of kids soy milk delivery. Our 4 kids are on soy milk and i am always running out of it. Lot of times i could not make it out to store for days and girls and Ammar had to suffer for milk. Thanks Fatima. Really appreciate you making a long trip out here for us. Its a huge help. Also i want to say thanks to Salahudeen family who we met little while ago but they are pouring their hearts out for us. Thank you and may Allah bless you here and after. Ameen. It is really amazing that when some people just break you up with their bad words then there is some nice people out there too who bring you back up with their support.
Wednesday, Abeerah came from school in dirty diaper. I know they check before she goes on the bus but it is an hour drive from school to home and she had diarrhea with all the extra medications she took for fever and seizures. She got sever rash because of that. I was trying to take care of it but it takes times to heal. Each time she make dirty diaper, she was so screaming out loud and bouncy all over the room. During diaper change i have to use all my energy to hold her down but still not enough front of Abeerah's strength and i got all kinds of kicks, bangs and broken lip. I am glad both diarrhea and rash are better now after almost two days of struggle with frequent diaper changes. Khansa and Zahra are doing great.
Ammar's regression really making me lose my mind so i get ready to go and meet his case worker on Friday since all kids made it to school and i did not had the sever head ache but as soon as i was about to step out, i got phone call from CPC center that Abeerah's connecter tube send home by accident yesterday so now they don't have any thing to put her feeding on. OH WELL. Drove to school to drop it off. While i was in school, I visit my 3 daughters, Zahra first. I have not seen her in her class since she start school. She look at me once and smile the same way she smile at the aid then walk away. It just took my heart out. Its not like her before. She come running to me saying Mommy and always give me hug and jump holding my hand when she use to see me at school. Then i see in her class, all the kids in her class are not mobile and chair bound. She is the only one walking and jumping around. There is many adult in the class for each child's one on one and adore Zahra and play with Zahra but its bother me that she have no kid that play with her since she love watching other children. I visit Khansa and i visit Abeerah in their class rooms. Then i drove home thinking with painful heart if i made a mistake to bring Zahra in this school away for all the fun she use to do at old school with classmates with mild disabilities. I know she is losing it all with time but at least she does benefit for time being from other kids around her. I don't know how they make the classes on what base but i need to speak to her case worker to figure this out. Or i am freaking out for no reason?? I was late for meeting Ammar's case worker so i just came home. Bilal and zarrar was working on fixing some garden tools and they did clean some part of the yard. Bilal's both teachers today canceled so after Friday prayer, Zarrar took him to his cousin's house to play. Kids came home and Abeerah had several coughing up and choking on her mucus episodes. Carmen came over in the evening and help me and later put the kids to bed. Then she play with Ammar and i was able to go out to musjid to make trawee first time since Ramdan started. I enjoyed my little break. After Bilal came back from his cousin's house, we took a trip to Walgreen and get some craft projects and some other materials for his home schooling. He is doing good.
Wednesday, September 26, 2007 1:13 PM CDT
WHAT A DAY I HAVE. Thanks for all your prayers and support. I am sorry, I could not update it yesterday due to a very busy day. Abeerah had a fever up and down all day Monday and Tuesday morning. But thank GOD she did not had any seizure after that. Monday evening Zahra and Khansa came down with fever too. So that means no school on Tuesday. Bilal been on bed since yesterday and his throat hurts a lot. He lost his voice for all day yesterday. My day start early with one kid cry to other. Keeping up with medications, feedings and making sure that enough flouid goes in them just kept me on my toes. We had a meeting with a contracter for building a ramp or elivatore for the wheel chairs. Well meeting went quite long or in other words guy did not want to leave. After he left, I develop a sever head ache in my 1/4 of the head. Pain was so unbareable that i could not do much. Every time i stand up, every thing feel spinning around me. I think its all becasue not having enough sleep for some days. I call Carmen for help but she came in the late evening. Poor Bilal helped me so much when i could not stand up. I am really bless to have him around. Some times i get really sad how his child hood is going through with all that. Is he going to grow up to be a good man? I feel really sad when it comes to him. That is my biggest pain each day. May GOD guide me with doing the right for him. Please do drop a line for him in his email box. He gets really happy to hear from people that how wonderful he is doing a great job. superbrotherbilal@yahoo.com
Abeerah had a very good evening. She was laughing and smiling a lot. Zahra and Kahnsa also did great. So nice to see that. Every one feels better and slept good last night. Bilal still having a hard time speaking. He refuse to drink the medication. He always give me hard time when it come to medication. If he hardly finally takes it but other second he spit all out. I always pray that he never get sick. Ameen.
Monday, September 24, 2007 2:26 AM CDT
Oh my Lord, You are the most Merciful of all Who have mercy. Please have mercy on my sweet Abeerah. Ameen Update Monday 11:50AM Abeerah develop a fever by 5AM. I checked it and it was 102. Then she started to shiver a lot. By 6am i call the nurse. They told me to put cold towel over her head. After Saher Bilal started to cry that he is not feeling good. He felt hot so he went back to bed. Here i am watching over Abeerah, who is so aggitated and with fever 103 and there is time for the pick up for Zahra and Khansa for school. After both girls left for school. Then Zarrar came form work and he took over watching Abeerah. He kept the wet cold towels moving to bring her fever down. Wake Amamr up but he was very angry with his runny nose. Make him ready to go to school, But he was so upset and started to cry when he saw the bus. I try but he would not let go of me. I kept him home. He also seems coming down with some thing. I don't know whats happening in this house??? Nurse came by 11:00AM. She check her over all but by that time her fever was gone down. Nurse think i should take here to the Dr. if her fever came back.
Now i have Bilal, Ammar and Abeerah are home and sick. They need my full attention when i have not slept at all.
Update Monday 3:15AM Abeerah had an other siezure and lasted for about 3 minutes. Little longer than the last one. It happened after 45 minutes the first one while she still did not recover from the first one. Her tounge stayed in this time and that blocked her air ways when she is already congested too which cause her whole face turn red. I hold her down and try to make a room for Oxegen to pass with my fingers. This just scred me to death.
Update Monday 2:30AM Abeerah had a seizure at 2:15 am. She was not doing good all day today and been very cranky. Last night, I stay up all night with her because she was going long coughing episodes without taking break between every five minutes and she also choke couple of times on her own saliva. She throw up little twice . Then this morning she slept for little while and wake up ok. Looks happy but by afternoon she start a very agitated mood. Each time i change diaper and move her around she just cried. She fuss and looks disturb. She bang her self a lot on her chair back and forth. Also she had congestion and bad runny nose all day. I gave her medication and call the nurse. Nurse will be coming tomorrow to see her. By 11 am she fall a sleep but breathing very hard. I did not like the sound of it. After putting kids to bed except Ammar who just never sleeps, sits by my head and play with his toys by pilling them up around me on the bed. I fall a sleep for little bit when i woke up with the sound on intercom which i keep next to my ears with high volum at night in case any thing happen to Abeerah at night. I ran in her room and she was having a seizure. I make her sit and hold her down till her seizure stop and she let her self loose in my arms and fall a sleep. This is so heart aching to watch. I am not freaking out now as i am dealing with her seizures more often but each time it does break me up and took me a long time to get hold of my self. Seizures are terrible thing to wacth your child going through. I will talk to her nerologist tomorrow. I hope she feel better soon and no more siezures.
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We were invited for iftar on Saturday in the musjid so i went with kids just to get out the house. Girls did great there. They love watching the kids playing and laughing and people walking by. First hour went great because Zarrar was watching Ammar but when he left to work and Ammar was all on me. He is just too much boy and do not sit down. I could not hold him down when people was praying. Watching him regressed this summer bothers me so much because he was understanding the meaning of sit down or stay out in the hallway or no running front of people while salat time. He just run one side to other front of praying people with his loud sound and i am trying to chase him back and forth through people. Then i realize how much i am disturbing people bringing him here so i decided that i should not come here till he learn to sit down quietly or find a baby sitter for him when i come here
So far Ramadan is going great. 1/3 is already over. Fasts are not hard at all but only time when i had to feed kids several times a day while i am fasting, I have to remember that i am fasting.
Sunday, September 16, 2007 11:52 PM CDT
Thursday (update) Thank you all for keeping Abeerah in your parayers. Alhamdullilah, She is feeling much better now. She had some rough days. Her fever stayed in between 101-103. Each time temprature went up, she started to have mild kind of seizures. Mild means, her eyes start twiching and body start shacking but not like she had other times before. This was some thing new. She did get better when quickly i injected her seizure medication through her G tube. But it happen rapidly when ever the temprature rised. She did not look herslef. It scared me so much. Seizure is the thing no parents ever can get use to it. She had many episodes of crying out loud and banging her self back and forth on her chair. On other side Zahra and Khansa had their stuff going made lot to deal with when i was not feeling good myself. It was really hard for me to watch how my little daughters are suffering every day. Each day some thing new i have to face. This MPS is a really horrible disease. Watching their pains each day, i just don't understand so many things but I know who created us all, Knows what is best for us.
Please do include me in your prayers too during this month. Things get harder for me to handel some times. On top some people have no decancy, calling here and telling me how GOD hates me and giving me his punishment and becasue of my sins, my kids have to suffer. While GOD love her and gave her healthy kids and a beautiful life. I only can pray for her to learn from GOD's mercy and stay quite if she can't say any thing nice to the people like me who are hardly making through their each day. I don't know why with one phone call can put me in so much misary when i know its not true.
I know there is not all HIS punishments, HE test his people in many ways who HE love. Like it says in Quran
"Be sure we shall test you with something of fear and hunger, some loss in goods or lives or the fruits (of your toil), but give glad tidings to those who patiently persevere, Who say, when afflicted with calamity: "To Allah We belong, and to Him is our return":- They are those on whom (Descend) blessings from Allah, and Mercy, and they are the ones that receive guidance. [Quran 2:155-157]
I just know and try to work on it that we have to be patient during hard times and always remember that Allah(swt) is the Creator of everything and We all will return to Him. No deed is lost in front of Allah and we will be rewarded for even the minutest good that we ever did do. Trials afflicting us can be signs of His Love.
Please do pray for my strength.
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Monday Need prayers. Abeerah had two mild seizures yesterday. She is having a high fever since yesterday. I am trying to keep the fever down since i know that is cause of the seizures. Last night went great but since morning she is hot again. She been very fussy and very hyper. There is moments,she cry top of her lungs and bang her head hard on back of her chair over and over. I am not sure what is happening to her. She also choking on her slaiva. Other than her, my self, Ammar and Zahra are sick too. Quite challenging to take care every one. I think it is the weather change that bring the cold to every one. No one make it to school today and stay home sick. Keep us in your paryers.
Ramadan Kareem to to every one. I hope this month bring blessing to every one. Its been a very very exhausting week for me. Starting from last sunday, First guest over, school's stuff going with all kids, teaching Bilal at home, Planing for the big Iftar and dinner with my in laws family, going for sighting the moon and going through same old situation like every year on starting the ramadan or not and then lots of cooking for two days straight while kids were home for jewish holiday.
Wednesday no one could able to sight the moon from any of our friends and family all over the united state or any others could confirm sighting it even it was very clear sky so we did complete 30 days of Shaban according to this hadith. The Prophet (peace_be_upon_him) said: Do not anticipate Ramadan. Start the fast with observing the new moon and terminate it with observing it. If the sky is overcast let the month run to thirty days. NARRATOR Abdullah ibn Abbas
Thursady night we went out again and did spot the new moon. It was absolutely beautiful. Bilal was very exited to see it. It was his first time sighting the new moon. It took little while till he was able to spot it his own. We pray after sighting it. There is very different feelings when you start Ramadan after sighting the moon your self. This really sadden me watching that this very important part of our deen is just vanishing away. No one even tries to go out and look for it and just follow the calendars already made for 5 years. I remember when i was little, my father use to carry me on his shoulders to sight the new moon each month. And there was a reward for us who can able to spot it first.
Khansa been not feeling well and she is cry out loud every other hour. She cry all day in school on Friday. Saraquil is not helping her so it is not behavioral problem. I know her feet are turning in ward and bother her a lot. It cramp up a lot then she cry out loud. Therapist put tapes around it to keep it from cramping. I give her feet message twice a day. i am still not sure what is bothering her. She is also not drinking her self like she use to do holding her glass and taking sips from it. I am giving her juice or water with a dropper. It seems like i have to line up her appointments for her swallow study soon and also surgery for G tube before she end up dehydrating and we end up in the hospital like Abeerah.
Friday we did Iftar in the musjid with all my in laws family who are trying to keep the tradition going which their parents use to do on every first Friday of Ramadan. Meet lot of friends which i have not met since last year. I took girls there with me and carmen went with us to watch the girls while i am busy serving but she had to leave to pick up her daughter and it got really hard for me when khansa was not in good mood and i was in between serving the dinner. Also their AC got problem and girls starting to fuss a lot so after cleaning we just came home.
Abeerah is doing well. I had to call the nurse because her skin around G tube don't look right. Nurse will be sending us the wound nurse to take care of the problem. Abeerah continue on and off with choking, fussing, sleeping trouble and same trying to stand every chance she gets. She had gain 14 pound since we came back from the hospital. New formula came and that is with more calories than the old on. I talk to the nurse to making less of her calories since she is getting heavy and it is hard for me to carry her around with my bad back. Now we will see a dietist for her to watch her diet. She is losing her hair really fats. every time i comb her hair or touch her hair, it comes in my hand in bunch. I also started to see some baldness in her head, specially back of her head.
Zahra is doing great. Still teething and keep her fingers in her mouth time to time. I see a lot of difference in her since the summer. She have regress a lot. She comes home from school very happy. Bus aid told me that Zahra is very popular in her school. Every one loves her there. I know her teacher. She was Khansa's teacher for 3 years. So she is familiar with every thing. Now school knows a lot about the syndrome dealing with her sisters so she is in good loving hands. She is really a sweet and very loving girl. If you get to know her you will love her too. After few slaps of her little hands and her hand all over your face getting to know you by checking your eyes, mouth and nose, you will get a hug from her in the end. She will give you a smile if you try to talk to her. If you move a little then she will show you her dance moves. She is a really sweet. She love going out. She gets really exited and starting to jump and laugh when i put shoes on her that she knows she is going out.
Ammar is another blessing in our house. He is really cute boy. We are really stressing the way his progress going. During summer time they did not have any therapy for him and he regress so much. Hardly giving an eye contact and lost all her alphabets and words that he use to know. I get really frustrated when it comes Teaneck board of education. His teacher is change this year. We hoping new teacher can give him attention that he need. I did contact some of other schools closer by working just for Autistic children but there in no opening at this point.
Bilal is doing great. He is learning at home. we are working on times right now. He is very lazy in writing and need help in his hand writing.
Zarrar is working and busy 7 days a week. Abeerah's hospital bills been coming every day. We get almost 5 bills a day from every where. Seems like any one just pass by her in the hospital, we got bill for that too. LOL. Insurance did cover much but our part is piling up in to a huge amount and that is stressing zarrar out a lot. Only time we will be able to start paying them when he gets his tax returns by next year.
Sunday, September 9, 2007 2:42 AM CDT
Thursday Girls first day of school went great. We were so lucky to have the same bus driver and aid from last year for this year too. We did put the request in but was not sure that it will be accepted since they have to rotate the route for drivers every year. I am very happy to have such a caring husband and wife team to work with our girls again and do not rush me putting them in the bus like all the driver did to me in past. I can tell you, making them all 4 kids ready on time is a very tiring but atleast i am not struggling with Bilal for right dressing to packing his lunch that he keep changing his moods about it. After girls and Ammar leave for school, Me Zarrar and Bilal have a breakfast together and then we start Bilal's class. Thursday went great. So far i am enjoying teaching Bilal. Zarrar help him in his reading of english and Quran. Ammar having a half a day to school for whole week so he is home by 12:00. Girls came back home very happy and cheery on their first day. I was very happy to see that. We had a great rest of the evening. Abeerah doing good and only once a while coughing up. We start Khansa on Seraquil and it did help in her agitation. Now we are working on her drooling and chewing her fingers part. Her feet also giving her a lot of pains more and more each day. Except Ammar every one is fall greatly with their new schedule and sleeping at night. Ammar kept me awake all night after he woke up taking a very little sleep.
Friday I gave up putting Ammar to bed after trying all night. Zarrar came from work and play with Ammar and i start making girls ready for school. Bilal woke up early too. Ammar looks very active so i send him to school. After breakfast we took a trip to STAPLE to get some school supplies for Bilal. When we get back, his teacher came to spend time with him. Karen work voluntary for Butterfly program and coming here to give Bilal some quality time. She is really wonderful and Bilal really love spending time with her. Me and Zarrar had a meeting with contractor and Fatima(Great friend) for building a bathroom on first floor and wheel chair ramp for girls. We are in REALLY TRULY need of that dealing with 4 handicap kids. Since girls are getting big and it is getting REALLY hard on me to carry them up and down the stairs many times a day and carry them to the bus due to a lot of stairs in front of the house. I hope thing move forward little faster before i break my back or neck. Ammar came home from school and we all went for Friday prayer. Bilal have his art teacher came and he got busy mixing colors. Ammar was tired and fall a sleep. Weather was hot and bringing Abeerah from the bus to indoor take some time since they use the elevator for her wheel chair which is slowly come down then i have to open her all kind of belts and try to make a better grip to carry her in side. By the time i get inside, she was burning up with heat and get very agitated. Khansa also get on her cranky side. First make them cool and then feed them. We had a surprise visit from our friend Yasmeen. She been a great friend and a great support. She bring me a greatest gift ever. A bag full of beautiful cards made by little kids at sunday school. It was absolutely beautiful. After she left, Me and Bilal went through each one of them and it just start a flood through my eyes. How beautifully kids had put their thoughts in words and pictures. I never had gift like that touching before. Thanks Yasmeen for doing all that for us. Later me and Bilal stick them on the board and hang it up in girls room. Every time i look at the cards, it just feel so good that so many kids are thinking and praying for Abeerah and our family. I always feel pain deep in my heart that my daughters will never have any friends and i will not get to know other kids of their age group but this gift just tells me there is kids of their ages do think of them. Thank you all. It make my day really beautiful. Later at night, I took kids for a ride and we stop and get some ice cream at dairy queen. I drag my self some times to the edge just so my kids can have little out door moments since they get board staying in and going out just for ride fresh them up and specially Bilal can be happy.
Saturday Every one woke up late. We just stay indoor and relax. Girls did good. On day off, i feel that i am just made to feed and clean. Ammar really gives me a lot to clean up. I teach Bilal for couple of hours since we are taking friday as a day off. He hates writing. Good in math and love to learn about animals. We were expecting my sister in law over but she did not came which made Bilal very upset because he thought he will be able to play with his cousin. After Zarrar left to work, I dress kids up and we went out. Since we can not go outdoor in hot days due to girls can not take the heat. So i kept them in the van. We also have AC problem in the van to make it cool during the day so we went out at night. I needed to pick up some meat and some other items from stores. I park the car in front of store and just run in to pick up. Bilal kept the walky talky and when i go inside the store to pay and pick up my order, he stay with me on that. He had lot of fun but i got a lot of stares since he talk a lot. Bought donuts and feed every one. When i reach to Walgreen to pick up girls' prescription, Abeerah started to cry so we just came back home. By the time i bring each one inside, i was tired. Hook Abeerah's feeding first. Zahra was very happy. She loves going out. After putting kids to bed. I clean up entire down stairs since we are expecting guest tomorrow.
Thursday, September 6, 2007 1:45 AM CDT
I am sorry for not updating here about Abeerah. Couple of very busy days here. I do not even know when morning comes and when night falls here. Laber Day we had invited Zarrar's family and my uncle and his family over for BBQ. Carmen came and help me with kids for some hours. She just came back from 2 weeks of vacation and i am happy to see her back because i was having a really hard time with keeping up the laundry and could not able to do the grocery shoping for long time.
Abeerah had a bad night yesterday coughin and choking through all night and weezing while breathing. I kept the suction machain on and keep it close by her and suction her time to time all the secretion that cause her choking. I try giving her decongestion to help her with the cough. It did worked. Finally she fall asleep by 4am. And sleep well till morning. I call the nurse this morning to check her out. Also her G tube have skin starting to grow around it and it don't look right. Abeerah did great in the morning and nurse said she did hear little sound in her breathing but not much to worry. She think coughing is good that she is able to clear her airways. She want me to talk to pediatrition for the med to decrease her secretion. While nurse was here Abeerah did well but after she left Abeerah start going again in to coughing up without stoping to breath in between. That scares me lot espacially when she start turning red.
I got a call from school that if Ammar did not get his polio#3 shot today he can't come to school tomorrow. i make an appointment and took him to the pediatric. Nurse give him the shot. I waited for Dr. Tantawi to talk to her about the girls but she was very much busy with patient. It was kind busy there so i left a note and drove to Ammar to his school. Get his tag for tomorrow and came home. He is going to have new teacher this year. I am not happy with that at all.
Abeerah did ok rest of the evening with some coughing here and there but by night she get worse again and having a hard time. I need to stay close to her tonight. Dr. Tantawi call me and after some talk with her, she put Zahra and Khansa on SERIQUIL too for all the agitation and crying going on for some days with them. She think its behavior Issues. I will try the med and see how it goes. Tomorrow is the first day of back to school for Ammar and the girls. Bilal will be staying home and study with me and Zarrar. I am having a very busy schedule from tomorrow. Hope to keep up with every thing. Month of Ramadan is also around the corner. I hope this month brings lots of blessing for my family.
Thursday, August 30, 2007 3:37 PM CDT
MONDAY, 4:20AM Abeerah had a seizure sunday morning. Since Friday, she is not doing good at all. She been coghing up a lot with choking sound. After the seizure she slept 4 hours. When she woke up, she just stay very quite all rest of the afternoon and did not move much or make any sound. In the evening she started to feel hot. I been trying to bring the fever down with medication and wet towel. Please do pray for her. Also Zahra and khansa been very cranky and fussy all day today. Its been a long day for me and day is still not over yet since Ammar is up running around at 4am. I will update more soon on Abeerah. I hope every one having a great Labor Day weekend.
Thanks to all of your prayers, Girls are doing well other than their usual stuff. Kids are keeping me crazy busy these days but time is precious that i can spend with them. We are enjoying their vacation at home. Just a week left for schools to be open again. Just thinking of all the running and rushing of making kids ready for school before 7am coming ahead make me tired. I have to put my strength together and get orgnize this week. Back to school shopping will took place when kids start going to school because i can not step out from home these days.
We had a great last weekend. My sister in law who live in Massachusetts visit us with her two kids. She also make it to PA for a day and took Zarrar and Bilal with them. Zarrar's whole family get together there for last days of summer vacation. We also had a visit from 2 nice families from Lawrencewill. It was really nice and relaxing to spend time with friends and family.
Abeerah is choking a lot these days. She is completely fed through her G-tube but during each feedings and between, she keep coughing up. Other day she choke really bad so i had to plug in the suction machine if i need it but i have not use it yet. She is sleeping better this week.
Khansa having at least twice crying out loud moments for no reason that i can understand and during crying, she bite her fingers so hard that it bleed. She is eating very well without any choking this week so i am very happy with that.
Zahra have lot of ups and downs with her behavior. She start putting her fingers back in her mouth and drooling. It seems like she is teething. She is very sweet and always ready to give me a hug. My heart ache when she hold my hand or give me hug, thinking how can i stop her regression before she turn total unaware of me.
Bilal is doing great. We are plan of doing home schooling for him this year. I already start working on teaching him. I hope i can be a good teacher to him. He will countinue with his swimming, art and Quran class.
Ammar is doing good. He is too much to handle. All day he is up to some thing and keep me on my feet and at night he don't sleep which keep me up too. Girls get up early so i just take napes here and there during the day which i end up bad head ache every day. If i don't take pain medication right away, that turn in to migraine head ache and i end up throwing up.
Zarrar is back to work from sunday night and doing good.
I am learning crochet these days. I always wanted to learn that and my sister in law got me started. Its like i have nothing else to do with all the free time i have...LOL
Thursday, August 23, 2007 3:07 PM CDT
I don't know where to start. This last couple of days bring me on my knees to beg from GOD to give me more strength to take care my children that he have given to me. I am not complaining or asking him why, Because I know he choose me for some reason with 3 beautiful ANGELS. Not every one get that blessing. I am only asking him to give me more strength so i can full fill my duties my best that have given to me by ALMIGHTY.
How much i am thankful for this month being with my kids 24/7 that much i started to hate MPS more. The ache in my heart is worsened. Watching my daughter every move and every pain, and watching them deteriorate each day is painful. MPS is really taking over on their little bodies more and more each day. Only thing i can do is watch them die front of my eyes.
Zarrar took a week of vacation from work which he did not in a while. He always save it for hospital days and Drs. visits. But this time he think he needs a break. We all took an other trip to Pennsylvania to Zarrar's sister's house for two days. Zarrar was going there to help them with cable and internet hookup so we all went as well. I was really looking forward to it to enjoy the nature. But it rain heavy both days and we just got stuck indoor. Kids did good first day but then they turn on their wild behavior. I try my best to keep them calm so others won't freak out having us over because they are not use to that much noise around. Changing 32-35 diapers a day and feeding them one after other breakfast, lunch, dinner and between snacks then chasing after Ammar from touching things here and there and climbing on the furniture. Then kids took turn in sleeping. Two always up and crying which left me with no sleep. I was just going on non stop with upset kids. I got to realized that why we don't go for vacation. I guess vacation is not the word in my book. How beautiful the view was there but i was so exhausted to enjoy that. Good side of that visit that we all get to see a bear and a deer in the back yard. And Bilal, Ammar and Zarrar had a great time there. I am really thankful to my sister in law to invite us over. Coming back, view of the mountain was absolutely breath taking. SUBHAN ALLAH. HE made every thing so beautiful. we can't praise him enough for all the beauty he put in this world.
Its been cold here for some days. Abeerah and Khansa came down with fever. Khansa been fussy since we get back home.
Zarrar is home for vacation till end of this week and trying to organize a little. Also trying to take care some of his stuff. Bilal is having fun going out with his father every where. I start new supplement for Ammar and it seems working little bit. Now days are coming closer for school to be open again and i am stated to worry more. I am not happy with his school. As time passing, My hopes fading away with the progress he is making in his school. He need more care and more therapies. I am searching for other schools who specially work with Autism but we need to hire a lawyer to deal with Teaneck board of education. I have to learn to fight for my rights. With Girls, we took it easy because we know there in no hope in sight but with AMMAR, there is hope. May GOD help me in this one.
Wednesday, August 15, 2007 2:48 AM CDT
August 19th. Every one is doing great here other than their usual stuff. Some stressing moments to some great moments with kids. I guess thats how life is. We should always see the bright side of it and be thankful for it. My father always taught me that In hard times, always think of the people who is in worst condition than you are and be grateful what you have and that will get you through it. That is what i keep in mind and thats how i make each day and thankful for it.
Yesterday was our wedding Anniversary. we been married for 16 years now(MashaAllah). There is ups and downs but i am still loving my husband as the day i got married to him. He is a sweet loving father and husband.
Yesterday Abeerah had check up and she is doing good. We need to see Neurologist again for her agitation, hyperactive, being cranky and sleeping disorder. May be we need to change her medications. I hope every one having a great summer.
August 16th. Past two days, I had come down to fever. Its been quite challenging two days. Taking a break and get some rest is not in my schedule. And i always keep going fever or no fever but this time i felt very dizzy and weak. I could not hold on to things in my hands with weakness. First bringing girls down stairs in the morning, i needed to take breaks between each one to gather my strength. Usually i change all 4 kids diapers in one time one after other and most the time i have to run after Ammar to get his diaper change. But Yesterday, I needed to take breaks changing one diaper and then take a break then go change other girl's diaper. And running after Ammar for diaper change........It felt like last minutes of workout. Watching Abeerah was also quite harder since she stays on the move and could get hurt in trying to stand up or some times even sitting is hard for her and she falls. She needed to be watched all time for not pulling her G-tube out. Her feeding times i always stays with her because she pull the cord out and formula end up every where. And Connecting the feeding tube to G tube took forever because i could not spot the tiny hole with my watery, blurry eyes. Kids were frustrated and house was a mess.
This two days make me realize Health is a true blessing of GOD and how important is for me to stay healthy.
Poor Bilal help me a lot. He is my sweet helper. I do not know what i do with out him. We are really blessed to have him. He keep an eye on Ammar from not destroying any thing. He keep putting Zahra back in her room whenever she escape from the room. Oh man...This boy need to make some muscles. Zahra is much stronger than him. Poor boy dragged by Zahra real easy.
After popping many fever reducer medications, I felt better today and watching kids wanted to get out. I put my super powers on and take them all to the mall. I thought it will be great outing for me too but our van frustrate me on top. When i hit the road. I realized, there is no breaks and no AC. I do not know how we make it there but kids had real fun. Bergen mall is almost empty mall. Ammar and Bilal run around, had rides and eat from each vendor there. My favorite coffee place closed down. I was sad because to me, no coffee means head ache. Well we stay there till most of the stores started to close. Way home I stop at movie rental for Bilal's Ninja Turtle some "TMNT Movie" which he been going with his father for some days to rent it but each time there is no copy left. All copies are out for rental. So we just rent "Clifford" for change from Barney and Dora.
August 15th This week been busy as always. Kids are home, Just keeping me on my feet all the time. Those, who i have not return their emails, Please forgive me. I do not get much time these days but i will get there soon.
My cousin came over on Friday to stay with us for some days. He is here for business trip from over sea's. It was nice to have some one over.
We did make a day out of the house. Zarrar's sister bought a house in Pennsylvania and she invited us to look at the house. Did some one say Pennsylvania??? i was definitely going. I love nature and Pennsylvania have all that. It is a very beautiful state. Zarrar took a day off from work. We drove behind my sister in law. We enter the house with them first time after the closing had done so house needed the help in cleaning. Beautiful big house. I help out in cleaning between the kids stuff. Zarrar and my cousin went out with brother in law for shopping to set up the house. Our plan was to leave next morning to make it to the MPS gathering which was in our way back home but with all zarrar's family together and helping out here and there, we left late and my cousin needed to meet his client in NJ also Abeerah was not feeling good at all so we did not made it to the MPS parent's gathering and just drove home. But getting out of a routine for a day was great. It feels like i made a new start.
Kids been doing well. Abeerah and Ammar keeping me really busy these days. Both are keeping me awake all night. Ammar always up to some thing to just make me scream on top of my lungs but he learn to say so cutely tapping on my shoulder when i am about to burst "Don't worry" and "its ok". His cuteness make me just keep taking him hour by hour.
Ammar's new wall art in the hall way wich done at 4am.( classic)
But i am very thankful to GOD that its only two of them not all five at same time. Khansa and Zahra are doing very calm and happy. Their smiles are so precious. They sleeping well at night and waking up early. Bilal is doing alright but kind of his bored side. He is really angry that we did not celebrate his birthday even he was reminding us each day since the month of August started and almost 5 times a day. But we needed to cancel the plans because of trip to Pennsylvania that day and there is nothing available for miles. Thanks to Rachel and James for making him happy with the gift they bring for him, He is loving that video game a lot.
Abeerah staying in some pattern of two bad days and 3 good days. But in good days she is not sleeping at night and stay as hyper and happy as the day and she needed to be watched all the time otherwise she end up hurting her self.
Zarrar is doing great but busy busy and busy like always with his job.
Monday, August 12, 2007 12:26 PM CDT
Need prayers. Abeerah is not doing well lately. She been very fussy all the time. She had a seizure this morning at 6:AM which was quite long(About 2&1/2minutes) and make me freaked out. It is hard to watch your child go through this terrible thing. I hold her down and make her sit the entire time but she bit her tongue out in the end. I could not make the decision to run down and get the emergency seizure medication or just keep holding her. I call out loud Zarrar to come and by the time he wake up and reach up, She had calmer down and fall a sleep. She been keep sleeping all day after that. Only open her eyes for few minutes, couple of times and then fall back to sleep again.
Wednesday, August 8, 2007 2:44 PM CDT
I am really feeling exhausted these days. This summer vacation as much i am enjoying it with kids being around as much i am extreamly busy. Hardly have any time to sit between cooking, cleaning, feedings, diaper changing and keep up with the medications for each kid.
Abeerah been very very active latley. I am having really hard time keeping her on the bed. She is constantly moving and keep trying to stand up. Poor girl do not want to give up. She wants to stand her own and walk around but she did not regain all of her strength back yet and can not stand her own. But she keep trying. Abeerah never wants to give up. But I am scared that she can get hurt trying in just blink of my eye because she is very quick and known as "FLASH GIRL" in the family. I can not step away from her if she is not belt in on her chair. She do not like to be in her chair at all. She do not like to sit on her hips because of her tail bone. I am constantly moving her from chair to bed. Abeerah had not slept in last two nights and I stay with her up as well watching her. She is on Seraqual twice daily which is for sleeping and behavior medication but did not seems to be working on her much. She have a history of getting immune to the medication given her for some period of time. I also notice many time that her hand curled up but she did not had any actual seizure in some days. Thank GOD for that. She is seems happy and do smiles at me and try to grab me when i am closer to her or hooking her with the feeding pump.
Ammar is another one who is keeping me on my toes all the time. He is so full of energy. He is quite a climber and get any where he see some thing that can make a mess to keep mom busy staying off of his back from asking the words and keep pointing to the objects asking what is this Ammar? say this Ammar? He is also back on his not sleeping at night till 4-5:AM and moving in the dark in search of destroying any thing he can get hold of it. When i get upset with him, he start saying over and over "don't worry, i throw away.....don't worry, i throw away...". HE IS REALLY CUTE. I think we have to get him to the nerologist to take care his sleeping problem.
Khansa and Zahra are doing very well. They both are much happier and laughs out when i play with them. They are sleeping well and getting up on their own with a great cute smile. I take my time to take care of them and so not rushing my self like school days. Its really blessing to have great moments with them. I hope it stays that way.
All girls started to suffer constant diaper rash and i was scraching my head to figure out why it is happening again and again. Finally i solve the mistery. Hospice program decided to give diapers for Abeerah since she is sign up with them. It was big relief for us to at least cut the cost of one out of 4 kids in diapers. They send me 3 box of diapers and gave me whole a lot of diaper from some one grown out of it. So i hold on the delivery of our old diapers for this month. But free diapers came out very cheep that each time i change diaper, i needed to change the pants too on each child.(so much of the laundry) When diarrhea happened, it just leaked all over. Then rashes started to happen which almost never happen to my daughter due to i stay on top of that. Then using one rash cream to other..... Now i give up, it was a lot of head ache for me and lot more work. So i am back to our expensive diapers. I had enough of that savings........
I have not able to take the kids out. Kids get really cranky staying 24 hours at home, Specially Bilal. Myself started to feel really tired staying home 24/7. Our van aircondition do not works and Zarrar have no time these days to take it to the shop to fix it. I hope we able to get that done becasue we are invited at MPS gathering on Saturday and i am really looking forward to go there but there is no way we take the girls out in this heat without AC in the van.
Saturday, August 4, 2007 12:00 AM CDT
Friday, August 4th. I am going to do a quick and short update today. Every one is doing just fine here. I am very thankful for that. Kids are on their very bored side these days. Last three days, its been very hot here and we all are home bound basically. Did not even get out to the backyard due to HEAT. Most of you know that girls do not sweat to keep their body cool that ends up boiling them inside. First their body get hot, then hard time to breath and then it could cause death. Abeerah gone into sever side of that. We are trying to maintain 70 in the two rooms and staying all day there. I hope our van AC can get fixed soon so we can get to the mall or some indoor fun for kids.
Zahra having a bad rash and it is keep coming back. She feels uncomfortable. Its more like a tiny bumps on the diaper area. I am not sure but i think that cause by all the medication she took in some weeks.
Bilal having a great time with his swimming, and the art lesson once a week. His birthday is coming on August 10th and he is very exited and just counting the days to be 8 years old.
Ammar is keep doing his things to keep me busy. Just yesterday, i was starting Abeerah's feeding pump and i saw this white smoke filling up the room with powdery smell coming from other room. Follow it and ther was Ammar trying to make the room fresh.
Need prayers for me. My back is in lot of pain lately.
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Tuesday, July 31st. Abeerah had a seizure this morning at 5:30AM. I was just sleeping next to her and woke up with the choking sound. Make her sit and hold her through so she don't choke. She slept for 2 hours after that but when she woke up, She was very happy and rest of the day she did great.
We are very happy and THANKFUL to have Zahra happy again. She is doing good now and no fingers in her mouth any more. She is back to herself. YAYYYYYYYY
All three sisters went to school on Thursday and Friday. It is kind of mix of happy and sad feeling when i say good bye to them in the morning and watch them going in the bus all together. Happy for that they are well to going to school and sad that how much i wanted to my sister to be in my school when i was growing up and here my all 3 daughter goin in same school but totally unaware of all the fun of the sisterhood.
Today was the last day at school for girls. Now its going to be a busy busy days at home. Ammar's school still open till August 13th but he only goes for couple of hours. I hope weather stay cooler and girls stay well so i can able to take the kids out to the park or zoo to bring Bilal's wishes come true for going out.
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Tayyaba
Sunday, July 29, 2007 12: 00 AM CDT
Thank you all for checking on us. Updating here get little harder for me since i have no TIME these days. We been on our very stressful side in last some days. All three girls going in to crying and we are just trying to figure out what is bothering them. Zahra been crying on top of her lungs with tears last three days. It is so painful to see my happy, smiling Zahra like that. My first guess was it is her teeth since she been keep grabbing her tooth constantly for a while. Finding a dentist for her since Dr. jackson is away is another long story. But long story short, we find Dr. Silverman who willing to see her. He took X-rays which was not an easy job while Zahra was banging her head on her chair back and forth. After Xray he told me every thing looks fine with her teeth. But i was not taking my CRYING OUT LOUD Zahra back with me the same way. Some thing have to be done. I asked to take her tooth out the one she is grabbing even he think its alright. Also take her two baby teeth out which have permanent ones grown in the back. She had her three teeth pulled out which was NOT easy with very very hyper Zahra. Dr said taking her baby teeth was a good idea since they were perfect and was not going any where in long time. It did cost us a lot but i was willing to pay any price to get that done so Zahra can be calm. Dr Silverman is great guy, mostly Drs. refuse to even look at her.
She bleed all the way home. She still put her hand in her mouth. When we reach home I feed her huge bowl of Ice cream which helped her stop the bleeding. Three hours pass just perfect but then Zahra start crying again. She cry and cry the same way. We still thought its the pain from her teeth pulled out. Mortrin helped after an hour. But it start back again in next two hours. Friday she stay home and cry the same way. Me and Zarrrar put our heads together and see NOW WHAT? what possibly can be bothering her? She is on pain medication, Antibiotic and behavior medication. Then she start a rash. Ok that could be the reason but that taken care off then what? She was keep putting her fingers in her mouth the same way. May be taking her tooth out was a mistake...........May be its some other tooth bothering her? I put braces on her arm so she can't put her hands in her mouth to touch the area where her molar is pulled out so it can be heal. I gave her codeine when mortrin was not helping her. She stay calm whole evening and slept the night. It was mentally really stressing, just with her was enough but on top other two girls were crying too.
Khansa also crying out loud at least twice a day for two hours at least. First i thought its behavior thing but i see she cry when she bend her legs and sit on her feet. its her feet that in pain and cramping up. So Tylenol in every 4 hours help make her on calmer side. Khnasa's feet taped to help her from cramping.
Abeerah was hyper, very agitated and cry. could not keep her on her bed and in chair she cry and feel very uncomfortable. I did not send her to school on Thursday and Friday. I think the reason was, Dr stopped her behavior medication during the day. She also got hurt right on her eye just been hyper and jumpy when i was cleaning her face and bang it on side of the counter. Saturday i gave her Seroquel during the day instead of at night and she stay calm. I need to talk to neurologist about that on MONDAY. She do feel very weak and every time i move her from one place to other, she cry. She cry when i try to change her clothes or diaper. She is taking her feeding fine. I am using the tape to keep the tube in place. New nurse is coming for 3 hours a day. Friday she gave her a bath and i helped her. It was the first time in 10 years Abeerah took a bath from some one else other than me.
Ammar and Bilal are doing fine. We find a swimming class for Bilal and he enjoyed his first lesson. Ammar been doing good and responding well to his name but we lost his attention last two days. He is not giving eye contact, Not looking when we call his name and not saying any thing. It could be the reason of, Carmen gave him MILK instead of his soy milk not knowing he is allergic to it. I did not see any rash or swelling but his attention. Did you see how much guessing we have to do on daily basis? Please keep praying for our family so we can guess better dealing with MPS and Autism. Tayyaba
Tuesday, July 24, 2007 1:59 AM CDT
Thursday, July 26th. (8:00AM) Need prayers. Zahra been very uncomfortable and cry here and there for couple of days. We beleive that is her teeth bothering her since she keep touching her teeth. Her dentist is away and office wants us to go to their recomended Doctor but we been there last time and he is not the Dr who can deal with special needs. I call several other dentist yesterday. Mostly do not take the insurance but i am not worried on that becasue our dental is barely cover by our insurance anyway. I need my Zahra to be comfortable ASAP But no one can handel her without genral Anesthesia. Since yesterday my poor princess is crying out loud with tears and very hyper. Did not sleep all night. Mortrin only help her for hour the most and then she is back to crying. My heart hurts so much for my poor baby. I call Dr. Jackson at home and begg him if he can look at her but he had some surgery done and he is unable to come to work. I am back to search for the dentist. We been through same with Abeerah when she was at her age. Its like De Ja Vu. Zahra is just exact copy of Abeerah.
I am going back to the phone right now with the some more dentist's numbers which Dr jackson and other Dr. recomended. Please pray that i can able to find the dentist soon for her.
Also please keep Jawad in your prayers too. He is back in the hosptal due to seizures and not eating. Father is on his edge of breakdown. Please help Mr. Adil in any way you can. His phone number is 917-405-4804.
Tuesday, July 24th. Abeerah went back to school after a whole month being sick. She is doing much better now. We are very thankful for that.
I want to apologies for not able to return email, phone calls and updating here often. I know many of you anxious to know how things are going with Abeerah. It is just become very very busy here to keep up with Abeerah's medications on time, feedings and constantly watching her along with taking care each one of other kids and running after very active Ammar who is always up to some thing. I get on my feet from 7: am and stay on them till 1: am or some times it just goes on all night, it depend on Abeerah or Ammar these days who having a sleeping issues.
Abeerah is feeling much much better now. We are greatly thankful to all of you who prayed hard for her recovery and GOD ALMIGHTY who bring our Abeerah back to us. She is gaining weight with time and starting to sit her self. Now she starting to grab things around her. She did start having some very agitative and crying out behavior which turn very hard for me to hold her down or leave her alone for sec but after Dr. increase the dosage of SEROQUEL from once a day to twice a day, she does get over those behavioral moments after taking the medication. I still see her time to time, curling up, stiffing her body or staring still in one direction with her eyes up but Luckily she did not had any big seizure since she is on TOPAMAX. She smiles and pay attention to every one around her. She loves when i talk to her. Her feeding tube became very loose and connecter tube just keep popping out each time she make a move during her feedings. I contact to Dr. Alexander(surgeon) and he wants to see her but in the main time we are putting tape or rubber band around it to keep it secure from poping out and milk spread every where.
Zahra's crying with discomfort of her teeth is increasing day by day. I try to get her appointment earlier but Dr. Jackson is away till August 6th. They wants me to take her to other Dr. which they recommend but we had a bad experience with that Dr. last time when Dr. Jackson was away. Now we are back to hunting for the Special need dentist again who can understand and willing to work with MPS children. Poor Zahra is not sleeping well at night in last two nights and keep pulling non stop her tooth with her fingers. She is also teething two different places behind her baby teeth. I hope and praying that it just don't get like Abeerah.
Khansa is going in to laugh out loud and then cry out loud behaviors. We been really trying to understand what is happening to her. Is there anything bothering her. Its more seems like behavior thing. Or so far that is our guess came up to. She start crying suddenly and cry with tears for while then stop her own. Then same way she laugh and laugh for while then stop her own. Its happening at least two times a day.
Saturday. After breakfast, Zarrar went and pick up Mr. Adil and his son Jawad. I did mention about him couple of time here. Jawad is a special need 6 years old boy. I baby sit him for some hours so his father can get some break. Jawad is a very cute boy. He improved a lot since the first time i met him. He is very much aware of people around him and show a smile when he gets to know you. We had a good time playing with him. His father started him on a diet since he is unable to carry him around any more with his broken back cause of Jawad's heavy weight. We are in search of looking a stroller for him. I get really sad with their situation of mother been far away and father taking care of him 24/7 and unable to work here to support him here and his family back home. Zarrrar drop both home in the evening and went to work. Between watching kids, diaper changing, cooking feeding and keeping up with medications, i needed to clean the fish tank too because Ammar end up in the basement and pour the whole month supply of fish food in the tank. Poor fish. This boy just keep me busy. But he is too cute to get away from every thing. Weather been really beautiful here for some days. Kids really love being out door. We are really fortunate with big back yard and Zarrar been working hard every free minute he gets to make it beautiful so we don't feel miss out going to parks or not going for vacations. After putting kids to bed and get done with Abeerah's last feeding which is 12pm, i felt she is breathing hard. I check her pulse and it was slow and spacing up. It scared me to death. I try to get in touch with Zarrar but could not reach him. She also stated to choke every 5 minutes on her saliva just like in the hospital. I was not sure if i should take her to the hospital but i knowwhen we were in the hospital they did not do any thing but keep her on watch closely so thats what i did. I stay beside her and needed to suction her time to time till 4:am and keepingthe phone close by to call emegency if i need too. she start feeling better and fall a sleep.
Sunday. Start my day little late, When my sun shine Zahra woke up and start banging on the door. Abeerah's feeding start at 8am. After feeding breakfast to every one. I give girls and boys bath except Abeerah who takes her bath on bed till we receive bathing chair for her. Then I clean up. Zarrar went for groceries shopping with bilal and I start to prepare for lunch. We have visit from our old friend Brahmia's family who we get to meet couple of times but become very close. Some reason we did not met in person in a while. It was very exiting to have them over. Also we also met another sweet family with them who wants to come visit us and the girls. Bilal had a great time being around so many young kids. Ladies help me with taking kids out, food and stuff. We all really enjoy beautiful day out door. At night for Abeerah, i lower the dose of Seizure and behavior medication to see how she does and she did sleep alright. Zahra stayed up late with her pain in her teeth and as soon as she fall a sleep, Ammar woke up start playing around. I took napes between watching him and keeping an eye on Abeerah.
Monday Woke up early but felt tired. Zarrar came from work and told me its raining and Abeerah's stroller left outside in the rain so Abeerah should stay home. I went to wake Zahra and Khansa up for school but they were sleeping very tight. We decided to keep them home too. And so is Ammar who have no chance to be up after staying up all night. I slept couple of hours till kids stay in bed. I wish i can rent another body for a day so mine just can sleep all day but then reality hits and i have to start my day. I love my kids and feel blessing the time i have with them. I do not want to miss out any time i can spend with them which i learn from our worse days at the hospital. Between feeding breakfast, Zahra's and Khansa 's crying, non stop phone ringings from collectors, million things on my head to take care, cleaning, meeting with dietitian for Abeeerah then meeting with Abeerah's nurse and then training a new home health aid who came to take care Abeerah.... i started a migraine head ache. I was on my edge. I told the home health aid (smantha) while she is with Abeerah, i am going to take a shower to feel better. When i came back downstairs, she had gone. Trying to find out why she left with out waiting for me and unable to connected to Abeerah's caseworker at the Valley program, I get double head ache on top. Carmen came over (late) and ( (after no show for some days). She take care the kids and thank GOD for my loving husband who made a cup of coffee for me. I felt better after an hour. Kids feeling calm and quite so i took a break to quick stop at "Children Place" closer by to buy kids summer clothes which i have not done in long time. Carmen watch the kids. Zahra cry out loud at bed time. She seems very upset with her teeth. After pain medication and Orajel on her teeth she calm down and fall a sleep. Abeerah stay up till her last feeding done by 1: am.
I want to say thank you all of your prayers, emails, nice messages in the guest book and specially all of those who came over to visit us in this time. Your support is our strength. May GOD reward you for that. Ameen.
We are sad to know one of our MPS family's heart ache. Aaron M. Athy, (MPS-I) Lost his father. It is just really heart breaking. Check Aaron M. Athy's journal and leave a message for the family.
Tayyaba Beg
Thursday, July 19, 2007 0:24 AM CDT
Thing are getting to seattle little bit here since we are back from the hospital but every thing feels different here. Its like we left some thing in the hospital. Abeerah is doing good but not the same. She become very quite lay on her bed most of the day and stare the walls and celling. I make her sit on her chair but she gets tired quickly and gets cranky so i sit her frequently for short period of times. Things are really not the same.....its not same at feeding time. I feed Zahra and Khansa and miss feeding Abeerah who always ready to grab any thing in my hand before i can reach her. I shared every thing i ate with her since she always had a good appetite and always ready to eat. It feels really hurt when i know we all eating and enjoying cookies and cakes or nice dinner and she can't have it. How about vegetables???? I always make sure she gets enough of vegetables in her diet to stay healthy. Her favorite Carrots, Pizza, yogurt and all the snacks that she loved to eat any time of the day ....It sadden me so much to know she can't have any kind of tastes, Just plain milk(formula) keep pouring in her stomach directly. She is so weak right now and need to have lots of food to get her strength back but there is a limit to her diet. How can some one can live on only milk? I just feel she is staying hungry.
It is very painful for me when i don't get to wash at the end of the day, same huge stack of girls' drinking sip glasses used all day since Abeerah's glasses stay clean in the cabinet. she don't drink through those glasses any more. I miss her throwing glass at me after taking some sips and i always watch her move to save my self from hit. That was our little game.
Abeerah's bed is in the living room and she stays there most the time. She sleeps there at night and i stay beside her on the sofa. I take her out side if weather is nice. She watch her siblings and kids do enjoy out door. Taking every one in the yard is a lot since we don't have any ramp. I been carrying Abeerah and khansa to the yard but now i need to make extra trip for the wheel chair as well.
We did sign up with Hospice program for Abeerah. They providing a nurse for Abeerah for 4 hours a day. Also all the medication will be deliver to us instead of going to the pharmacy which is great. They always have on call nurse so we will be on safe side since my kids have a habit of getting sick on weekends and holidays when no Drs. Available.
i did call the school today to see what need to be done to send Abeerah back to school. So we are hoping to send her to school from Monday. I hope she gain some more strength by then. We need to provide all the equipment for feeding to the school and Dr.'s instructions.
Khansa is doing much better now. After the fever she started to choke on every food and drink which make me really worried but Thank GOD she is alright now and eating better.
Zahra is crying time to time last couple of days. she seems to be uncomfortable with her teeth. She is taking pain medication but keep pulling her tooth with her fingers. I will be taking her to the dentist and make every effort to get that tooth pulled out which dentist did the filling during her dental surgery and she is so uncomfortable ever since. I really hope Dr. Jackson don't refuse to take it out this time. I can not watch her being so uncomfortable with that anymore.
Ammar is doing great. He is too much boy. I really need to keep an eye on him. Here i get busy, there Ammar up to some thing. If i started to write his exciting activities here, this journal will be quite long. Bath room is always his target. Today Zarrar took him out after i had enough of cleaning after him. From sugar spread all over the kitchen, to making a mess in the bathroom, to pouring strawberry syrup in margarine tub and mixing it together then try to spread it, to taking a bath in some puddle outside after the rain, to throwing the wipes all over from the box and its just on and on.
Bilal is doing alright. He do not eat well and staying very skinny for his age. He is spending more time with his father these days working in the yard. I call lot of places today to find him a swimming class closer by. But mostly places are already in middle of their sessions and some have no space left. He is so eager to learn swimming. I hope to find some thing for him soon during summer break.
Please continue praying for Abeerah and rest.
Tayyaba Beg
Monday, July 16, 2007 8:43 AM CDT
I am sorry for not updating in last couple of days. Its just crazy busy here for me. Since we were in the hospital over a week, so now i am catching up with every thing here. My sister in law visited us from Massachusetts. She been a great support for Zarrar and I. Then we have some visitors coming to check on Abeerah. Abeerah is doing much better now. We are very happy and thankful to see her smiling again. She had some seizures and couple of mild ones but since we increase the dose, she is doing better on the seizure side. i hope it stays that way. Watching your child having seizure is just heart aching.
She is on constant watch so she don't choke or get hurt. Her bed is placed in the living room so we are always around her. Her G-tube is healing ok and she is taking her feeding alright. We find out that problem was the feeding pump not our measurements. We need to call Home Medical's supply and get that fixed soon. She is still not digesting the formula well and having diarrhea. That worries me a lot since we are watching her to gain some weight. We just changed her to different brand of formula. i hope it makes a difference. Abeerah can not sit for long without support, can not hold any thing much longer. Bathing her is big challenge right now since she can not sit her self. Now we need a bathing chair for her soon and for Khansa too.
Ammar, Bilal and Zahra is doing alright. Khansa had a fever for some days but she is alright now. Yesterday she keep choking while drinking her juice. Thats make me worried. I hope that just don't continue and she keep swallowing her own for ever. Ameen
We had a nurse came over to sign up for Hospice program. Which they just provide all the comfort and care at home to the patient who have fatal illness but they don't believe running to the hospitals any more. Also wants us to sign the papers for how far we will go with her. We did not sign the papers yet till we sort every thing out and financial side as well.
Please keep praying for Abeerah and pray for our strength. I need that. This whole thing just weaken my heart. My girls become lot more precious to me. I want to spend more time with them each day. Abeerah's smile starting to feel million doller. I love khansa's laugh when she hears her favorite poems. I don't want to miss when Zahra walks with her cute style toward the trampoline or dance in front of mirror. They are sweet little angels given to us and i love them a lot.
I want to say Thanks to our case waorker from our insurance company, Susan Bundy for helping us out through every thing. She been so much help to us providing all the equipment at home for taking care Abeerah. Other than our part of the payments, co pays and stuff not covered which is our insurance policy, She is GOD send to us. Thank you for saving us from lot of head ach.
Need speacial prayers for a little boy name Jawad. He came here with his father for his treatments from Pakistan. Last week he needed to stay in an Intensive Care unit for his non stop seizures and high fever. He discharged from hospital yesterday. His father is the only one taking care of him 24/7 and he is sick himself. My heart break so much for this family. They do not have any kind of help at all. Please help him in his hard time in any way you can. (He needs moral and financial support) Jawad and Abeerah.
Friday 6:00pm Abeerah just had another siezure. She fall a sleep after that. she is already on seizure medication. Dr. priscribe a Diastat. In case of more seizures need give it to her through rectum. And if seizure keep going on, she have to back at the hospital. Please pray for no more seizures. I am not looking forward to hospital again.
Still in need of your prayers. Abeerah had a 2 minutes long siezure this morning. That just freak me out. We are trying a new medication. I hope that can stop her having any more seizures. Ameen
We satyed over a week at the hospital with Abeerah. This whole time been a very emotional, stressing, tiring and down to our knees experience. This MPS stage really shook us up which we was not ready for it. But i am thank full and happy that every thing is better now and she is back home with us.
I want to say my thanks to Hackensack Hospital and their very dedicated team for giving such a good care to Abeerah. Also my thanks to all the wonderful Doctors to being there for us. I want to say thank to all the nice people out there praying for us and sending their support by writting in the guest book, emails and phone calls.
My special thank to My sister in law Naila, Carmen, Kelly and Leslie for taking care the kids while i stayed in the hospital. I am still in awe of Leslie heart who left her 6 years old daughter Isabel Jurado who also have MPS III type A and came here all the way from SC to help me out with her friend kelly.
Tayyaba Beg
Friday, July 13, 2007 12:53 AM CDT
Thursday, July 12th Abeerah looked lot better. Her vitals starting to looks stable after stopping all the medications. Dr Wallerstein came and told us that they do not see any hight pressure in the CT scan and now her heart rate going up indicate that she is not suffering from hydrocephalus. Which was a great news. I just wanted to bring her home. But her Pediatrician, genetics and cardiologist, agreed on sending her home tomorrow. They were waiting for her 24 hour EKG study results. The hospital bed and other medical equipment was delivering at home. I just had enough of the hospital and me and zarrar was exited to take her home tomorrow. Heart rate stayed in 40-60 range. It seems that the clonidine may have been the problem which was discontinued on wednesday. Abeerah still having moments of agitation/restlessness. She seems very unhappy and uncomfortable. We still trying to understand what is bothering her. Dr Wallerstein(genetics) think that she is having some type of seizure activity. She goes in to stretching her body, Rolling her eyes upward and there is no blink reactions. By 7pm, Cardiologist call and told us that 24 hours EKG study looks great. There are some concerns which he want to see us for next week but now we can go home. Then i talk to pediatrician and genetics, all ok to send us home. We went trough lot of paper work. Zarrar give me ok that every thing set at home for her. Nurses help me pack and i bring her home last night.
All the equipment looks great. Very comfortable bed. we put the bed in living room. We needed to suction her couple of times at night. I finally get to feed her my own. Its a lot of learning experience. The pump we received is seems very complicated so me and Zarrar are trying and putting our head together to learn it. But we are very happy to have her home.
Khansa is also running a fever. I hope she feels better soon.
Tuesday, July 10, 2007 11:03 AM CDT
Wednessday, July 11th Most of last night Abeerah was Coughing up and choking on her saliva. So much of her hyper side. Moving around all over the bed. Very much agitated. Her Heart rate been closely watched since its been a big concern right now. Her constant moving cause the tubing tangled up again and again. Then she even start trying to stand on her bed. So we put her in her stroller to be on safe side. She slept on her chair but her heart rate stay the same in between 39 to 41 all night. In the morning i waited for Zarrar to come so i can go home but he was stuck in traffic trying to make it. I ask the nurse to watch Abeerah so i can go home and make girls ready for school. When i reached home, Leslie and kelly was already start making them ready for school. I give an extra hand. After putting Zahra and Khansa on the bus, make Ammar ready and send him to school in his bus. We chat little and had coffee together. Zarrar call and told me that Dr. Alexander came to check on her. He think every thing looks great. Then we all drove to the hospital. Abeerah looked very nice when i enter the room. She was happy and smiling. She looked different person from last night. Zarrar and Bilal left because it was time to get Ammar from his school bus. I made her hair and she sat on her wheel chair. She looked really pretty. She play with her rings. Any body pass by she turn and look. I was really happy to see her like that.
Later Dr. wallerstein(genetics) and Dr Dyme (Cardiologist) came together and talk about which all MPS parents also thinking from Abeerah's symptoms, it could be possibility of Hydrocephalus. So Dr. Wallerstein wants to run CT scan test. I left for since other kids were coming home from school. Kelly and Leslie stayed with Abeerah. I feed the girls and take care their other needs. Leslie call to tell me that they are ready to take Abeerah for the scan but Zarrar wants to know why CT scan needed when it does not show the pressure. But He agreed to go ahead with it after talking to Dr Wallerstein, who think CT scan will do give them some indication if there is presure. When i was leaving to the hospital, Zahra start her crying mood so i dress her and bring her with me to the hospital. She was happy and went for walk with Kelly. Every one was happy to meet her. Leslie and Kelly took Zahra with them in their way to home. Abeerah did not look happy. She was in very much agitative mood. Looks upset and keep making very unhappy faces. Then her heart rate starting to drop Between 40s to 30s. We went down for CT scan and it was some struggle with Abeerah but they get it right on third try. From 8pm till 2am in the morning, Abeerah's heart rate stayed in 30s and monitor keep beeping every 5 minutes. Nurses and Drs stay close to watch her. But Thank Alalh with all of your prayers, it went up to 40s and she fall a sleep but keep getting up being uncomfortable. I also took couple of hours sleep on and off while she was sleeping. It was a very long tirding day.
Leslie and Kelly did great watching the kids at home. They been a huge help in every way. They are Godsend to me. I could not able to do all without them.
Tuesday, July 10th
Thanks every one for the prayers. I am very very much Thankful that Abeerah's surgery went well. She had a rough night. Her temperature drop to 95 just all of sudden. Then her heart rate dropped in to 30s. Nurses stayed closer to her most of the night trying to keep her warm with layers of blanket to rise the temperature and keep an eye on the heart rate. In the morning Zarrar came from work and took over and i went home to make kids ready and put them in the buses for school. Carmen spend the night with kids last night and she help me making kids ready. After Zahra, Khansa and Ammar left, i did little cleaning and making the room ready. My friend Leslie and her friend Kelly was coming from NC to help me out with kids. When i reach back to the hospital, There was big machine in the room and some people. They were doing the EKG of Abeerah's heart. They told me that her heart rate staying very low. So they are concern to do the surgery. Long story short, she was on risk. Zarrar went with her in the OR till she went under anesthesia then they send him out. Zarrar and Bilal went to pick up Ammar from the bus. I waited in the waiting room but i could not hold of myself thinking of Abeerah, How many time we been to OR with her and how much she went through past two weeks. I prayed hard for her to get better. I know Allah have his planes to sending them in this world but watching their pains is not a easy test.
About an hour later Dr. Alexander came and talk to me that things went well and she is in recovery. He explain how his feeding will be and they want to keep her in the hospital till she is ok getting fed by the G tube and all the equipment set up at home for her. Later i called in the recovery room. She was still not waken up yet. Her heart was going up and down . It just freak me out when nurse bring the resuscitation machine and put it beside her. My heart just could not take that. I stayed with her an hour in the recovery then we transfer in her room. She agitated first waking up and keep going back to sleep. Leslie reach to the hospital and it was so nice to meet her. Her being there give me so much strength. Also my In-laws visit. Later Abeerah woke up. She looks great. her heart rates get better. They give her some pedia lite through G tube. She did well. Zarrar came and took over watching her and i took a break. Came home and spend some time with Leslie and Kelly. Tell them things around and how i do with kids since next two days they are here to help me and staying with kids. Now i have one less worry that who will watch my kids. When i reach back to the hospital, Abeerah was coughing and choking up. She also pulled her G tube and it started to sticking out about an inch and bleeding. We call Dr. Alexander and he said he did put an extension in the G tube so its alright and he will be there in the morning to look at her. Feeding was going fine. She started to agitated and started to move lot. Pull her G tube again. Also coughing up and choking. At night her machines keep beeping because her heart rate keep going in low in 40s and some time drop to 38 to 39.
Urgent Prayers needed for Abeerah. Tuesday< July 10th. Abeerah just went in for the surgery for placing G-tube. My poor baby is going through so much. It is just heart aching to watch her. She had a bad night last night. She keep coughing and choking on her own mucus. Her heart rate keep dropping over night and Oxygen level went down in lower 80's couple of times. She have not eaten in 2 days. They stop feeding her through N-G tube when they find fluid in her lungs. She been on antibiotics since then. Please pray for her. There is lot of concerns going anethesia for MPS kids specially when her heart rate is not normal. Please pray my sweet princess to get all better soon and get back to her self soon. And please do pray for our strength to go through this hard time.
we are at Hackensack Hospital room 5W-35 201-270-3922 OR text message 201-390-1255
Thursday, July 5, 2007 10:40 PM CDT
MONDAY.July 9th. I can not update much right now due to my computer crashed on me and i am using someone's. I am requesting for prayers. Abeerah had a very struggling night last night. She is not doing good at all. Need prayers.
I am very very thankful for all of your support and prayers i received in the guest book and in the emails. Your support is our strength and your prayers defiantly working. I also want to say special thanks to all my MPS forum families who been a termandous support.
Saturday, July 7th. We had a much much better day compare to days in the past. Abeerah slept much better last night waking up only couple of time with coughing and choking. In the morning at 5-am choked badly which just freaked me out and 3 nurses just stay on her head for 20 minutes to helping her breath and suctioning with a smaller tube put all the way in her throat. We seeing a lot of her food ending up in her mouth and that also causing her to choke. Then she start a loose diarrhea. Dr. change her feedings in a lesser volume and more frequently to help her reflex and also put her on reflex Medication. Also change her diet in to soy base since she been on soy diet at home. Thanks to Patty for the reminding me about the soy. Now she is taking soy base with fiber to help the diarrhea. Most of the day we just keep suctioning her when she coughing and choking. which is about in every 20 minutes. I went home while Zarrar stayed with Abeerah. My sister in law was watching the kids. I help her out. After feeding and diaper changing and cleaning Ammar's mess which he did with sugar sprinkle all over the kitchen and living room. I guess he don't want me to miss him a lot when i am away from him.....LOL . Coming back to the hospital Bilal and Leila came with me to see Abeerah. Abeerah did well whole evening. I make her sit on the chair. Shampoo her hair with no rinse solution and she looked very cute in her new hair style. We have a visit from a friend. Thanks Juliana for the help putting Abeerah to sleep. Zarrar took Bilal and Leila home. He took the day off to help her sister out watching kids. Abeerah slept for hour and then she keep getting up all night with bad cough and lot of suction needed. Each time i close my eyes, woke up with her cough and needed to suction her. They are not giving her any medication for that. Now we have to just sit and wait for Monday to come so they can do the The Upper GI Series and we move on from there. Bilal hugging Abeerah.
Friday, July 6th. Another very long and busy day at the hospital. Very distressing to watch whats happening to Abeerah. Last night Abeerah was up till 2:AM then medications finally kicked in and she fall a sleep but keep waking up in between with coughing up with mucus and choking. Needed the suction. She woke up 5:AM again and start her energetic behavior. Zarrar came here straight from work and he took over watching Abeerah and i left to go home and make kids ready for school. Carmen watch the kids overnight and also my sister in law from Boston stayed who were visiting us for 4th of July. After making kids ready and putting them in the buses, i drove back to the hospital and Carmen left for her other job. All day we have more tests done one after other for Abeerah. She finally pee so they send that in too. Then she had echocardiogram and electrocardiogram done. Then cardiologist came by and throw a bomb on me telling that she have a LV Aortic Valve leakage. Which could be a problem in future for her and need bypass surgery to fix it. I am not worry for that now. Then Abeerah's oxegen droped in lower 80s and she need to put on oxygen. She continuously, cough and choke and needed to suction her all day.
I was told by GI in the morning that surgeon wants to run a The Upper GI Series Study to check her condition of swallowing and reflex. So we waited and waited but no one showed up for that. By 6PM surgeon came and told me that its to late to do the study now and weekend no one available to do it so they will do it on Monday morning and then he will schedule for the surgery to place feeding tube. He think this study is important to see if she need Fundoplication surgerywith Gastrostomy. So both can done in one time. I was upset that why they did not rush it to get done today when i was hearing it all day they are coming. My baby girl have not eaten in 7 days. She is hungry. I just started to lose my mind. They expect me to watch my daughter starving whole weekend and i just sit there. Why i stay here when nothing happening here for her. I rather take her home and let her suffer there. How long you go without eating. Doctotors put their head togather, Then they came back with sloution to give her feed by the nose. They place the NG tube in with 4 peoples' help but it was very disturbing to watch. How much more pain she had to go through. Her tears just melt my heart away. But beside feeling her pain, i was happy she can get some food in her stomach. Then they run a x_ray to make sure if tube is placed right. Zarrar came over after carmen came to watch rest of the kids at home and he bring coffee for me which i needed it so badly. Then Dr came by and told that urine test result came back and they find infection in it so they need to do Foley catheter which is a thin, sterile tube inserted into the bladder to drain urine. Oh boy, It was another painful period she had to go through. Abeerah become very uncomfortable, hyper and aggressive. Dr. ordered the pump to hook up feeding but 4 hours passed by and no one brought the pump or food for her. Zarrar started to get angry. He wants Abeerah to be fed. Finally pump arrived and hooked up some thing started to go in her stomach. It was a huge relief. Now we just have to wait for Monday and pray. Carmen is not coming for baby-sitting over the weekend so i do not know how things will work out with all.
Thursday, July 5th. Need prayers. we admit Abeerah in the hospital. She have been having a hard time to swallow food or liquid for some days. She have lost about 6lb in week and half. She is coughing and choking up on her mucus. Also sound wheezing while breathing. I am quick updating from the hospital right now and very desperately requesting for prayers. Its have been some very hard days with constant care of Abeerah. Today she went through whole lot of x-rays and blood tests. Still waiting for her to pee so they can send that in too. She is very hyper and constantly moving on her bed. I been on my feet just standing beside her to hold her from hurting herself or jumping out of the bed. Some times we need two people to hold her down. She had three episodes of choking and not breathing well so they put her on breathing monitor and hooked up suction machine to suction if she choke again on the mucus. Tomorrow we are going to meet orthopedic and gastroenterologist and some more tests need to be done. She is unable to hold her self to sit any more. This disease really took a huge turn so sudden. We was not expected to go through all this that soon. MPS really stinks. Pray for my baby to get better soon.
Sunday, July 1, 2007 11:02 AM CDT
(Monday, July 2nd)Things went the same today with Abeerah. I spend hours and hours to just get some liquid through her throat. Her chest is very junky and she is choking on her mucus. Sweet Abeerah is not doing well at all. Her behavior is the same. Even with increasing dosage that neurologist prescribe which making her sleepy alright but she is fighting with that. She dose off for few minutes but get back up jerking her legs and arms. Very uncomfortable. Even her eyes closed, she is not staying still. Her body become like a made out of dough and can not hold her self to sit or stand any more. She try to sit but fall right on her face or head hard. I have to stay with her all the time. Even she is belt on her chair but she keep banging her head to the chair to get hurt. This constant care making me really exhausted. Big problem, she is not eating or drinking well. Few tiny drops of liquid making her choke. She loosing weight. My heart breaks so much to see this happening so fast. Two weeks ago she was doing good and walking fine all over the yard with me. I hope this is just temporarily. I am aware of this phase had to come with MPS children but did not expected so soon.
Today talking to the neurologist and her pediatrician, we have to admit her in the hospital soon to put a feeding tube. It might have to stay some weeks at the hospital to get all done. I have no idea how i can manage it all with other kids at home. Khansa is also start crying out since yesterday. Desperately prayers needed.
It has been some tiring days with Abeerah. The poor girl is still not doing good. She is having a very hard time and is being very hyper and aggressive, jerking her legs continuously and tossing herself in every direction. She has become very weak. She was not putting her feet down whenever I try to stand her up. From her waist down her body is not feeling stable. I have not seen her like this before. It is just heart breaking to watch her like this. I have to stay with her all the time and in just a blink of an eye she hurts herself. We are trying to find what is really bothering her.
Thursday I took her to see a neurologist. Zarrar had to stay with the other kids since Carmen did not show up for baby sit. I took the car because the AC in our van is not working. Abeerah banged her legs and was trying to get out of the seat belt all the way to the Doctor's office. She keep getting to choke in the belt and I had to stop the car to fix the belt again. Her nonstop hitting her head to the door was just heart breaking while I was driving. The doctor checked her, read her MRI and x-ray reports. She came up with a couple of things and gave me the prescription for CLONAZEPAM, a medication to control seizures and panic disorder. She thinks Abeerah needs to get a feeding tube placed in her for feeding since she is not eating or drinking well and is getting dehydrated. She has lost 7 pounds in three weeks. She also wants neck X-rays done. She thinks Abeerah might need a shunt placed for draining the fluid from her brain but she needs a CT scan done to confirm it, but she want to start the medication now and see how it goes. Abeerah had a very aggressive behavior whole time in the Doctor's office. Its sad to see what MPS has done to a sweet little girl. Coming back home was a quite an adventure. First the car alarm turned on and I did not even know we had one and I had no clue how to turn it off. Then the car would not start and heat just cooked Abeerah up while I was trying to stop the alarm and trying to start the car. With very little struggle the car started but I took the wrong exit which ended me an extra hour away from home. On coming back smoke start to coming out from the front. Then heavy rain took place and traffic stopped everywhere. Don't forget that Abeerah was in her banging screaming behavior the whole time. Finally we reached home. It took almost 5 hours. This day will not be forgotten by me. Whenever I think to myself that things can't go any more worse than this, it always does. The first dose of medication did not make a difference. She stay up at night and same behavior. In the morning, Zarrar came back from work and stay with her for while and slept for hour.
Abeerah had little better behavior on Friday afternoon. She got calm after taking medication. Zarrar went to the mall so i decided to take the kids to the mall too since Bilal and Leila had been complaining for not going out and Zahra also started to get cranky. She loves going out. Making the kids ready and taking them to mall took a lot of my strength since I have not slept well for some days. On the way to the mall I discovered that our van's brakes do not work well. Not that again. I do not know why we just paid a lot of money for fixing the van and car recently when both are the same. HUhhhhhhhhhhh Zarrar is a huge APPLE computer fan and has been waiting and saving for last 6 months for this new magic cell phone. He has been telling me that it will be a huge rush to buy the phone. They might be sold out before he gets his. I wanted to see with my own eyes how many more crazy people were out there. When I reach there, I could not believe how there was a long line going around the mall. And people had been sitting there since morning.
Abeerah started the banging and head tossing back and forth and screaming loud again. I tried to calm her. I fed them all from McDonald's. We were just window shopping here and there. Bilal stayed with his father and Leila helped me push the stroller.
At 6:00 pm door open and people started to buying iPhones and people were cheering them up when they got out with one. The girls love watching that. The kids got tired so we came home, keeping enough distance between the cars for the safe side with brakes. We got to start looking for a new vehicle rather than keep spending money on these old ones.
At night Abeerah went back in her hyper behavior and went on all night. She keep jumping out of her 2 foot high railing bed. I held her all night to keep her from getting hurt. A couple of times I get up to just take her to the hospital but Zarrar thinks we should talk to her doctor first so in the morning I call the neurologist and she asked to increase the dosage. And that brought her in some calmer behavior. She keeps fighting with her sleep. Its been very hard for me since I have not been able to get enough sleep.
I am very desperately looking for a baby sitter since Carmen is hardly available. I am living with the fear what if I have to go to hospital with Abeerah then where am I going to leave my other kids? Please keep praying for my Abeerah. No parents should ever see their child suffering.
Please stop by and sign our guest book. Your words mean so much to us and they help us go through our difficult times. Keep us in your prayers.
Monday, June 25, 2007 4:03 PM CDT
June 28th, Thursday. Abeerah is not doing good at all. I took her to the hospital for her hip X-rays on Monday which orthopedic prescribe at school. Zarrar also wanted me to get her stomach X-ray done as well in case she have swollen any thing causing her a stomach pains. But radiology refuse to do the stomach x-ray without Dr. prescription. I page our genetics Dr. Wallerstein. So nice of him calling me back even after his office hours. He talk to radiology dept. Thanks to him we were able to get that x rays done with other x rays. My heart just cry out each time i am holding my Abeerah. Its been a constant struggle with her. Her arms and legs are all bruised up. May Allah help her. Please keep her in your prayers.
Tuesday was last day of school for girls. I send the x rays in but Dr was not there and now school is closed till July 2nd. Yesterday and today i spend so much time on the phone to find an appointment with neurologist and orthopedic to check Abeerah. But Drs. are so booked up. They can not give me any thing till August. They do not want to see her like that and only suggestion i get is taking her to ER. Dr. Tantawi is away for 3 week. I am desperate. Luckily one Dr. from girls pediatrician group, Dr Mo checked her x-ray results and he think it looks fine. He said it could be neurological behavior and he also knows that ER won't do any thing for us. Like last time they send us home finding a private Dr. I am really thankful to Dr Mohammed who been calling to Drs. to get Abeerah some help.
Finally we find a appointment with a new neurologist who willing to see Abeerah today. I hope we get this crazy behavior resolve soon. I hate MPS. It is destroying my sweet daughter. Please pray for her to get back to her self.
Zarrar's older sister's daughter Leile came over to spend 2 weeks with us. We are happy to have her over. We had so many plans for her but due to Abeerah's condition i am unable to go places or spend much time with her. But I am happy that Bilal having a good time with her. So far Zarrar's new video game keeping them busy.
We started hot summer here. Heat is also a big problem for the girls right now. They have hard time breathing when their body gets hot . We able to place an air condition in their play room to keep them comfortable. Hopefully when Abeerah feels better, i will able to get out to shop for a smaller AC for their bed room too.
Prayers.....prayers.......prayers. we are in need of your prayers for Abeerah. Its been a very difficult some days with her. She is very very hyper, unmanageable and crying most of the time. Hardly sleeping at night. I am losing my strength here. Feeding and diaper chaging is lot of struggle with her. I can not even hold her in my arms for few minutes unless i get constant head bumps and slaps. I try her pain medications, reflex medication and sleeping medications but nothing seems to working at all with her. she do not sit or ly down. She is not putting her hips down and just keep her self swinging on sitting with support of her hands and feet. When her hand get tired which happens in no time, then she cry out loud. Some times falling her self here and there and getting hurt. I have to watch her all the time which making me extreamly tired.
Our peditrition is away for 3 weeks for vacation. Other Drs. knows nothing about her and they want me to take her to ER but that is not the answer for MPS kids since we done it many many many times before and always return the way we enter the ER but with a huge bill for nothing. So i am not going to ER. I am taking her today for her hip x-ray which is recomended by the school Dr who saw Abeerah few days ago in school. I hope we find some answers soon if not then we thinking to admit her in the hospital. My poor baby is not her self. My heart is aching so much for her. This MPS really stinks.
Monday, June 18, 2007 10:19 PM CDT
This week went busy like always. Lot of visits to one kid's school to other. Last couple of week before school year ends, always make me drive here to there.
Tuesday was award ceremony in Abeerah and Khansa's school. I receive two envelop but unfortunately i just open one since its from same school which says ceremony start 1pm. But when i reach to the school, i find out that Khansa's ceremony is already done. They did half of the classes done earlier due to lake of the space for all the parents at once. It was upsetting that i could not be there when Khansa walked to get her award. She got award in music. It was great ceremony. From welcome to national anthem and slid show was just so beautiful. Abeerah called up and got award in education. I do not know why but i just could not stop crying. She was not feeling good lately and she was very hyper. Her aid Alicia had to hold her tight the whole time. After all the awards, Some student sing in sign language' Did you ever know YOU ARE MY HERO" which did not left any eye who did not drop tears. Kids really done a great Job but most credit goes to the teachers who doing an amazing job working with special children and teaching them so well.
Thursday we had an appointment with Ammar's teacher to observe Ammar in the class and then observe him with his speech therapist. He did great in the class. it was hard to avoid him when he try to looks at me. We just sat behind and act like we do not know him. I know if i smile or look in to his eyes, he will just want us to hold him. He really did well with his speech therapist the whole time.
In the evening, it was Bilal folks tale journey. His class been working on it but its been a secret. So i was very exited to see what Bilal is hiding from me. Carmen came to watch the kids. It was sing along. KIds workeed on leaning about different countries and they sing song about the each country they learn about. It was so beautiful. They even useed the country language in the song. It was fun. Kids done an amazing job. In the end all 2nd grader sing in sign language " Waht a wonderful world". So well done. After the singing, we call in the cafeteria and student show their work to parent which they did in last some weeks and about the countries they learn. It was a great night and great birthday gift from Bilal.
Friday, we were invited again to Bilal's school for Athur's night. Each student wrote book and they read it to the parents and all visitors. I read so many books and sign the comments sheet. Can't beleive that second graders can be a great Authors. it was fun.
Abeerah is not doing too good. She is jerking her legs back and forth. Very hyper and hardly sleeping at night. I have to constantly watch her. I am worried about her. I hope this new behavior is just temporary and she get back to her self.
Khansa is doing really well. She smiles all the time.
Zahra is doing ok. Other than her hand stay in her mouth and and keep pulling her teeth, She is doing good. Very hyper and always banging the child safety door to get out. we went through many heavy duty extra tall, mettle safety doors with her already and now she just broke the both sides doors of the safe room tthey stay in duringthe day. Now i am holding them in place with cord and do not know how long it will last gainst Zahra's strength. Bilal is doing good. Have some moments of frustration when he can't go places that he wants to go. But he is very good helper and he is helping his father a lot his in the yard putting the water sprinklers.
Ammar is not using any language at all day to day stuff. But he tells the objects when he asked with forcing to tell. when he need some thing, first attempt to get it by himself, second he will bang his head in to me and cry and in the last he will try to push me toward what he wants. Still i have no luck in making him go on the potty.
Saturday we had Zarrar's family's old friends over. It was a very busy day for me. Abeerah was not doing too good and lots of cooking and cleaning to do. I was just on my fastest speed between cleaning, diaper changing, feeding and then cooking for the guests. One of guest daughter do not eat any meet so made separate foods for her and for rest i did BBQ. It was fun to have company over. My sister in law also came over to meet them. We all had a great time.
SUNDAY Happy Fathers Day to all DADS. Zarrar and Bilal start their day early. Zarrar bought a new video game for Bilal and they both started to play( Zarrar can't let any opportunity pass to get himself a toy) I heard they having fun downstairs but i stay in bed since Abeerah did not sleep till 4am and i was extremely tired. After kids woke up and i get done with morning stuff and breakfast. I start making kids ready. We had a EID committee Fair which we been waiting for. Carmen came for help. Bilal and Zarrar worked outside in the yard. Bilal wants to be with his father all day to help him for fathers day. So sweet of him.
Great start at the fair. Bilal and Ammar went on moon walk and shark slide. Then we enjoy the magic show, kids games. Bilal loved the spider man visit. Then we lost Zarrar. Rest of the day we spend looking for him. It was a huge place and thousands of people. Brother Umer took Bilal to get some fun on the slides. And we took girls indoor since their body temperature started to rise with heat issues. Some one told me that he saw Zarrar upstairs at the food area and he is looking for us. We went up but i guess he took the stairs and we took the elevator and we missed each other. We all eat and bought some food for Bilal and Zarrar. Long story short is that Zarrar was looking for us and we were looking for him. Actually he never go out without his cell phone but today is the day he have to be with out phone. Finally when we find each other he was very upset on loosing Bilal just few minutes ago so now he is looking for him. He went out to look for him again. Me and Carmen walk out with strollers and crying Ammar (who want to go on the slide) to look for Bilal. I ask couple of people and one boy announced it for him on the speaker but right then Zarrar came up and told me that he found him long ago and they been waiting for us in the van. What a day it was. It was fun meeting all the people that i did not see in long time. Carmen was great help. She left when we reach home. One lesson to learn from this is, when i go out with Zarrar, make sure he have his phone with him. I am very happy that girls did great today specially Abeerah did well which i was so concern about going out today since she been not feeling well latly. she was more like sleepy the whole time we were out. I am very very thankful for that. It was great to be out Rest of the evening we all spend time in the yard while Zarrar and Bilal work on finish putting up water sprinklers.
By the way on catchingthe ground hog, is still not succeded. We give up since we saw there are three baby ground hogs too living with their parents. They are so cute. Now we are planing to catch the whole family. But Bilal is not happy about it. he want them to be his pets.
Tuesday, June 12, 2007 10:06 AM CDT
What a week. Busy and very much stressing. I want to say thanks to all who send us emails. Your words and prayers means a lot to us. Sorry for not replying since i was unable to put my thoughts together But hopefully i will catch up soon.
Last Friday(June 1st) we receive a call from Bilal's school. Usually when we have some left over pizza from last night, i cut the big slice of pizza in to small pieces to make it fit in the sandwich bag for lunch but that morning, i was running late so i give him in a bigger zip loc bag. After Bilal finish his lunch at school, he put plastic bag on his head. His lunch teacher got panic and tear it off and took him to the principle. After school psychologist and principle talk to him, They call us parents that our son is suicidal and dangerous. They suspended him from school and a huge story how terrible Bilal's life is at home. School also send a letters to different places about this. We were told that he have to see a psychiatrist of their choice. I was upset that they are making a huge deal about this. I know Bilal, he just goofs around. Bilal told me that he was just trying to make his friends laugh and did not know the danger of a plastic bag. But his joke put us in huge misery. I could not sleep for days tossing and turning, curling and tearing up and my stomach felt butterflies all the time. Zarrar and i were so over stressed by this. Zarrar was running around to solve this. I was just trying to figure out what we are doing wrong in raising him. I know there is a situation for him living with 4 special needs kids but we are trying hard to give him all the attention he need. I try to do every thing around him. He is the reason we keep going with our lives. I was on the floor praying hard to Allah to help us get through this. Good thing about this whole thing that we both were able to spend a lot of time with Bilal. He was very happy. He is such a wonderful boy. And very caring and helping. Friday we took him to a psychiatrist. After he talk to him, he told us that he do not see any thing wrong with him other than he talks a lot and become very frank with every one and talk without thinking first. He gave us OK for him to go back to school. And we got this huge relief. It felt like some on take a huge rock form my neck that i was carrying it for week.
Last weekend we had rain for 3 days and it got little cold here. Which means, girls catch a cold right away and they all miss school one after other. Abeerah having a really hard time. She is keep kicking her legs back and forth and mostly keep her head up looking at the celling. Very very hyper and hardly sleeping at night. huge struggle to take care of her. I am putting all my strength when i need to change her diaper, dressing her or feeding her. She continuously on the move. I get lot of head buts and some times her sisters gets it too when they comes in her way moving around the room.
Between kids been sick and Bilal's issues, we make little time to visit a friend Michael who is expert in making a ROSE GARDENS. I love Roses and want to grow some in my garden. So he invited us to see his garden. Bilal and Zahra went with us since they were home. It was absolutely beautiful. His garden is full of colors and different type of roses. I felt great with all the fragrance and colors in his garden. Zarrar promise to grow some roses for me in our back yard. That will sure attract some butterflies for Zahra.
On catching the groundhog is still not successful yet. We put trap out but we keep catching the squirrels again and again so far. Now we discover there is not one but two ground hogs living in different spots. One was not enough i guess. Our car been on the shop for some time and they can not fix it so it send out to the dealers but on top our van also decided not to work so it send out on the shop too. So we saty some days without traveling.
Saturday we had Jawad and his father over for lunch. Jawad is a little boy who is from Pakistan and getting treatment in NY. He looks so much better than last time i saw him. He is eating well and responding to his name. I was so surprise that going to school made a big difference in him. He is really cute little boy. I hope he continue to improve. His father is really doing every thing to take care of him.
Sunday we were invited to MPS beach picnic which is in Long Island Beach. I was not sure to make it there since our van was at the shop to fix. But after some calls, it got done for us. I start my day early so we can leave early. Started from giving baths and dressing to 5 kids. Many carrying to do and many up and downstairs trip in fast speed. But can not beat the clock. It took me 3 hours to able to get in the van with kids and all the needed stuff. We left the house 11:30am and reach there 1:30:pm. Long drive. We just missed SPARKY from the NY Islander hockey. Meet Joan. she arrange it so well. Lots of food. We get to meet many other families with children suffering with MPS. I finally met some families that i wanted to meet for long time. We had a great time. Zarrar took Ammar and Bilal to the beach which was some walk away. Ammar loved it so much that when they returned, he keep sneaking out and running toward the beach. Then Zahra's face started to feel red. She become very uncomfortable and keep scratching her face which later we discover that some small tiny bugs are biting her and other girls so we took them to the the beach. But some point we had to leave the wheel chairs since they were unable to move in sand. We made girls to walk. It was quite hard since i was holding Abeerah and Khansa and Zarrar was holding Ammar and Zahra, also keeping close eye on Bilal. Khansa did not like to walk on sand and she just hang in my one arm and other side Abeerah was hanging who keep trying to get down and grab sand to put in her mouth. Zarrar was having the same struggle with Ammar. We stay for few minutes in the water which was so beautiful. I could enjoy it more if my both arm was not holding the weight. Zarrar switch khansa from me with Ammar. But that did not went so well since Ammar wants to run in the deep water. I just had to make one kid sit down to get better hold but both of them just ready to fill their mouth with sand. When we get back to the picnic area, there every one get attacked by those tiny flies in bigger number. They were every where on girls. Every one gone mad and started to freakout. So we just run to our van which was park in distance, Zahra and Abeerah was crying out loud and every one was full of red bumps all over and itching bad. After cleaning and changing we want to get back home. It was very much fun till the flies attack.
Abeerah cry all the way home, She feel really tired in her legs and very uncomfortable. keep jerking her legs back and forth. Did not sleep at night. Also congested and felt warm. She keep getting stuck in to corners and any tiny opening or space, she just have to try that and then get her arm or leg stuck there and cry out loud. I really need to watch her all the time. My heart really hurts to watch her and I do not know what is going on with her. This is some new behavior she started.
Monday Zahra and Abeerah stay home being sick. Zarrar took Bilal to school and sign him back in. we making little changing in his schedule at school. He will not ride the bus we will drop and pick him up. Also he will stay in the class with his teacher during lunch and recess till end of this school year. He came home happy. Khansa's school call for being concern all the bumps on her arms face and neck. They want to be seeing her by a doctor. Abeerah and Zahra had diarrhea and later it got worse, Khansa came home and she also had the same going on, witch cause them rash and i stay very busy rest of the evening changing diapers and keeping up with medications. After every one went to bed, i want to have some sleep, I was aching all over and had not rest for some days but Abeerah woke up and she was hyper, crying, legs discomfort, congestion and diarrhea. Poor baby. I bring her downstairs. she kept on moving and hurting herself all night. Need prayers for her and for my strength.
Friday, June 1, 2007 10:03 AM CDT
Things are going great since Kids are doing well and its a lot to do with the weather. Winter is just horrible for MPS kids then it gets better in Spring in terms of no colds and stuff but then hot summer again bring a lot of other issues. Till it is not hot hot here yet, i am very thankful for having better days with girls smiling and doing well.
Last Friday we had an IEP meeting with Zahra's case worker and the the school staff. It was hard to go over all the regressions Zahra had this year. We are in process of changing Zahra's school and she will be going to CPC center with her other two older sisters starting from the summer program. It really sadden me when principle said they will miss Zahra a lot. Zahra been going to Shaller academy for last 3 years. When she start this school, she was verbal and was learning well. Then it was a great opportunity to keep her among other verbal kids. I want to thank her teachers, aids and all therapist doing their best to educate her but this disease took over of her most skills. Now i think it is not appropriate to keep her in that school. And also it will be easier for me to send all girls in same school. I want to say special thanks for the nurse who been dealing with me almost daily bases with Zahra's sicknesses and behaviors issues.
Long weekend went really busy. First, I could not find the right size of diapers since i ran out the diaper supply for my three girls. Using extra big or smaller one's cause extra work for me. Each diaper change need the clothing change too. Leaking diapers needed to change the bedding each morning as well. Lot of laundry pile up.
Saturday we had a nice visit from friends (Rachel and james). They are couple from Grace redeemer church. They are working to make a new lay out for the girls website. Can't wait to see that.
After they left, Real agony started...........Bilal did not forget his promise going to toys R us. Promise is promise so make all kids ready since Zarrar was leaving for work. Instead of taking him to Toys r us I decided to go to the toy store at the mall since that is much easier with 3 wheel chairs. But when we reach there, find out that store been close down. Great But not so great with my promise to Bilal. We stop at one booth to get some thing to eat since everyone looks hungry. People stop and stare at the girls. One lady who was behind me ask what i charge? what...she thought i work to take care special kids. That was not good enough when Zahra decided to go BM. Now i have food in my hand and my van is other side of the mall with diapers in it. I just decide to feed them first. But way back out Bilal wants to go on the rides that is place in the middle of the mall. It was really struggle to take Bilal and Ammar off the rides when it time to go. Ammar crying out loud, on top i see some wetness under my shoes while i am pushing the stroller. It was diaper leakage. Which i did clean with wipes getting on my knees that cause lot of stares. Ammar cry till we reach to the van. I know every one at the mall will remember me as a crazy lady. I am sure they will pass along this story to their children then their children's children and so on........LOL At the mall. Abeerah keep looking upward all weekend long.
After changing girls, we did make a stop at the toys R us for angry Bilal. But thank God that did went well. Girls were happy. But again, had to drag Ammar from the store crying because he love all the toys at the store.
Sunday, we just stay home. Bilal get to spend some time with his cousin. We all had a good time in the yard. Monday was another day. Kids were home for memorial day. We did not do much. Abeerah did not feel well. She kept her head toward the celling and stay very very hyper. Bilal and Ammar play in the small pool. Kids had a good time out door. After dinner gives them bath one by one. Abeerah had a sleeping trouble at night so i kept her down stairs in the play room. She stay up all night jumping around. Tuesday all kids went back to school. After putting all of them in the buses, Zarrar took me out for breakfast. What a treat. Came back and receive diaper delivery. YAYYYY. What a relief that was. Now i add one more box to the order so i don't have to face that diaper shortage problem again.
Things are really going better this week with girls. I am really thankful for that. I hope it stay that way. Ameen.
We had an IEP meeting for Ammar on Thursday. We talk about his progress and goals. I am very concern about him. School tells me he is doing great but i am seeing some regression of the words at home. We put request for more speech for him for next year.
Beside the kids, we are having some trouble in the yard. One Groundhog came from some where, living under the shed and eating all my flowers and vegetables that i planted. It really upsets me each morning when i see more of my plants are gone. Call the exterminator but they want $300 to catch him. So zarrar trying to see how can he catch him himself. we are also having a van trouble. It not working well. I am very sacred to drive it. And on top our car been in the shop for over three weeks for not able to start. I hope this part get solve soon so i can take kids out for ride or to the park thsi weekend.
Thanks all for stopping by. Please keep up with your prayers for us. They are really working.
Wednesday, May 23, 2007 10:15 PM CDT
By the grace of GOD almighty, girls are doing good for last couple of days.
Abeerah is so happy, alert and very hyper but its ok since she is not crying. Sleeping better at night but getting up very very early.
Khansa also doing good. Sleeping, eating and breathing fine. Walking so much better than she was in spring. School is really working on her walking and taking her for walks every day. She gives me some of her great smiles when i sing her favorite poems the way she use to sing with hand motions and all. Her smiles make my day so great.
Zahra is still with her dental pains and keep pulling her teeth with her fingers with continuous drooling a over. She made it to school 3 days in a row. Amazing!!!!! hardly done that this entire winter. she wakes up every morning with allergies problem. She is like mother like daughter. We both seems like in some contest of "who sneeze the most". But she is so smily when i play with her and little shy too. She love to play pat a cake with me and also hit me in the back while i am not paying attention and laugh out loud. So cute.
Bilal is busy from school, home work and with his Quran Class. But very anxious to know where we going in his summer break. Also he wants to take swimming lessons and if he can have his own swiming pool, he will have a better life. His shoping for toys list is longer than him.
Ammar stayed home sick for some days. Yesterday he even missed his class trip to zoo staying sick at home. He is staying very quite and not responding to his name either. Living in his own world. Loving outdoor. But still doing his things when i am not looking.
I am working as much i can on the garden. Zahra and Khansa loves butterflies. Poor Khansa can not chase them any more like she use too but sure get happy when she see one. She can't run but her eyes still follow them around. So i am working hard to attract butterflies in to the yard. I planted some butterflies bushes and lots of flowers. It is also a therapy for me when things not going right for me.
I am in some situation today, I ran out all the girls diapers. Since it is summer and they drink more and more diapers need to be changed plus some diarrhea days and quick changing for rash problems. It ran out before month finished. I did not check till i came to last bag. Shipment comes on 1st of the each month and i try to make urgent delivery but they won't deliver it till Tuesday. Ran some stores but did not find the size. On top school send a note for diaper needed in school. Today i went through each corner of the house and even took out the van emergency diaper bag but I have to run around tomorrow to find some diapers, other wise, i do not know what i will do without them this long weekend.
Some seconds away from hit by three sippy cups. Atleast 2 will be bulls eye(my face) Khansa need to work on her throw. Her aim is mostly my feet.
Sunday, May 20, 2007 11:56 PM CDT
I have not update here for some days. Its been hard to write or express my feelings here since one of our little MPS Friend Ciara Bennett is in the hospital and struggling to breath. My heart breaks for the parents. I can only imagine their pain. Check out her journal and please pray for Ciara and her family, and leave a message in their guest book for them. Your support and prayers can help them go through their hard time.
Girls are doing much better lately. Abeerah is back to smiling and Khansa eating and feeling better again. Some chocking here and there once abd while. Abeerah chokes on liquids and Khansa with foods. Khansa's drooling keep increasing by the day. She chew on her fingers all the time. Zahra still feeling discomfort in her teeth. She is finishing bottle after bottle of Tylenol and Mortrin but these molars still not showing out the skin. We need some miracle grow here to bring my baby girl back of her beautiful smiles and laughs.
I am really thank full for having a good days with my girls. Knowing Ciara's condition, made me hold my girls tight and spending more time with them lately. But it is not easy to be happy when you know your friend is in pain right now.
Ammar is not saying much at all. My hopes starting to feel crushing down when i use pictures and objects for him to point or try him to just say it with me and he just stare at me. I hope he comes back to labeling those cards pictures again and start using words. He is singing a lot but can't tell what is he singing. He loves outdoors and want to spend all day out in the yard. Last couple of days was cooler here and we all stayed in but it was so hard to keep Ammar stay inside. I bring him in from one door and he is out from other. This week his favorite toys are three big trucks. Poor boy have to make three trips to keep them with him. Every where he goes, those trucks have to be with him. I am helping him as much i can when it comes to going up and down the stairs with them. i hope he pick smaller toy for his next pick.
Bilal is doing good. Other than some complains here and there. Mostly for not taking him to places.
MPS AWARENESS DAY May 15th Day did not went how i planed it. Abeerah and Zahra was not feeling good and both stayed home. So i could not step out to give out ribbons and flyer. But spend time with girls at home. Thinking of what MPS have done to my girls made me really sad. Later took Both girls to the doctor. Big mistake taking them together but had no choice since both Drs where closer and no time between appointments to go back and forth. Dr. office have no ramp so i use only one wheel chair since there was stairs involve. Hold Zahra's hand and she walk with me. But in the waiting room had to run after Zahra and stop her from touching every thing and dropping what ever get in her hands. Coming back.... my van had a problem with breaks. Hardly make it home. Cancel every thing for the evening since can not drive the van. My plan was to attend the PTO meeting in girls school to meet parents. But in the end i did planted lots of purple flowers in the yard in remembering all our MPS kids.
Bilal took the flyer and purple ribbons to his school and gave out to teachers for awareness.
Tayyaba Beg
Monday, May 14, 2007 5:18 PM CDT
My Mother's Day, well every day is a mother's day to me because i really love my job. A man's work is from sun to sun, but a mother's work is never done. Being a full-time mother is one of the highest salaried jobs in my knowledge, since the payment is pure love.
I am really blessed to be a mother. I thank God for this blessing when ever i am with my kids, my heart feel sad thinking of those ladies who want to be mother but some reason, can't become one.
My day started with Abeerah's crying about 4:30am. she being really uncomfortable and crying on and off for some days. After trying the pain med and no help then i believed it is her reflex that bothering her but that thought did not go for long. She is also Gagging a lot. And very very hyper to handle her. So my morning was trying to make her calm each and every way i could think of. Bath her, Message her, feed her. I even call the dentist for help but on sunday and on Mother's day...where i am going to find a Dr. Zarrar stayed with her while i have to take care the other kids. Then i start to open the presents i got. What a nice cards and gifts my kids brought for me. These teachers really knows well how to get to mother's heart and come out through eyes. Bilal woke up on the wrong side of the bed or his request spending the night to his cousin's house did not approved last night so he threw his card in the garbage. I was upset and my mood turned bad. He is the only one out of my 5 kids who can make mother's day from his own feelings. Without showing, I put shoes on the girls and took them in the back yard. Girls walk around, Ammar jump on the trampoline and i started to dig for my flower bed. Then Bilal came to me and started to help me and try to hug me. I ask why did you threw the card away which you work so hard( i actually took it out the garbage when he was not looking. It was so beautiful 10 page long) And he said "these paper things and gifts don't mean nothing, real mothers day gift is to help your MOM and spend time with her so thats i am doing". He said it so calmly this big words that open my eyes wide and i could not hide my tears. So cute of him(Masha Allah). He stay with me and help me plant and watching girls and feeding rest of the evening. Other than Abeerah not feeling good and zahra have little bad moments before her next dosage of pain medication every 4 hours. It was the great mother's day. I have a great time with my kids. we all stay close before bed and i sang poems to them. Khansa was very happy and smiling to hear her favorite, "where is thumb-kin". I have not seen her smile in a long time so it was a greatest mother's day gift.
Tayyaba Beg
Friday, May 11, 2007 12:18 PM CDT
For all the mothers out there.
Have a wonderful day today.
====================================== Last two days past hard for me but these hard days make me be thank full when i have good days. First i had some difficulty in breathing due to removing an old carpet from my room without wearing a mask and all the dust and powder glue end up in my lungs. Which making me cough and weezing. Going up and down the stairs with kids make me breathless. Then way to Dr. our van decided not to work on us when our other car broke down last week. Now we have some difficulty traveling till Zarrar have some time to get them fixed. Zahra been very very upset and crying time to time. Pain med works but only some and for very little period of time. She keeping her fingers in her mouth and drooling so much. Very much frustrated. We visit Dr. Jackson on wednesday and he checked her teeth but other than, she is teething, he did not find any thing wrong with her teeth. I was insist that her tooth that he did filling for her during the dental surgery is the problem. Poor Dr. took X-rays and spend much time with her to learn what is bothering her. Her molars are still did not break the skin yet and its been 6 month she is so uncomfortable with her teeth. I want some answers. And Dr. Jackson is been really nice with us with girls on going dental needs but making teeth grow faster, break the skin and bring them out is not in his power. So all we have to do is wait and Zahra have to deal with it. But please pray for her. She is not having an easy time in months with this. Dr. Also think that with grinding her teeth, her teeth become very sensitive and that could also bother her. He told to use sensadine toothpaste for that.
Abeerah also having some very hyper and not sleeping time. After two days with one medication to other, i learn her reflex is the problem again. She need to be back to the Dr. to get her prescription but for now Peptobismol is helping her little bit.
Khansa is doing much better. Keeping her between two upset girls was not fare to her so i needed to separate her and she stay in living room but watch her closely since she put every thing in her mouth. Sitting is a big problem for her. She can not sit for long period of time and get upset when can't move her own.
Ammar and Bilal are doing good. They enjoying the time in the back yard. This week Bilal been really caring for his brother. They both love to ride their jeep in the yard and jump on trampoline together for hours. This week Ammar use screaming for his needs than banging his head on to the walls or on hard floors so there is some improvement going to be happy about.
Tayyaba Beg
Monday, May 7, 2007 0:46 AM CDT
May 8th, 2007 Need prayers for Zahra. she is very uncomfortable last two days. School also send the note that she was uncomfortable and after school she came home very upset and just cry and cry all evening long. Keeping her fingers in her mouth and drooling a lot. Her mouth is swelling also. May be there is infection or she is growing new teeth. Our dentist did not have any time today to look at her but tomorrow i will be taking her to Dr. I hope he can figure out problem and help her, with her ongoing frustration with teeth and teething issues. poor baby girl.......Tylanol helped her little with pain. She had a very difficult time falling a sleep with all the discomfort she is dealing with. Abeerah did not sleep much since sunday night. Staying up most of the night. She is also very very hyper and moving a lot every direction. But paying great attention when i talk to her or play with her. Her EEG appointment got canceled again due to trouble with our insurance. Khansa doing ok. She is back to her self.
Me and Zarrar attend IEP meeting today for Abeerah and Khansa. It was really nice to meet child study team and every one in school. We get to learn all the progress they made in school and all the skills they lost this year. we set up new goals. C.P Center staff is great. They are doing amazing job and doing every thing to give girls all the help, comfort and education they need.
May7th.I can not thank Allah enough for giving me some great days here. Girls are feeling better. Weather been just perfect. When Kids are better, every thing feels good. Khansa is back to her self again. Eating, drinking and sitting well and no chocking. I left these past scary days behind me thinking of an other down on this ups and downs journey and looking forward to having a great days ahead. We been spending more time in the back yard. Girls love it. Abeerah is standing and taking better steps only for short period of time so much better than last year. Feet braces really helped her a lot but Khansa is falling a lot. Her walks are not going straight since her one foot is really turn inward and that makes her go more like in circles and after few steps she keep stumbling.
Saturday, Will, his two beautiful kids and George came over. Kids play in the yard and we had Bar-B-Q. It was nice to have a company over. Later Bilal helped me with gardening and we plant some seeds. I love nature and summer always make me happy. I appreciate and thank GOD more for his each creations. All the growing green grass, trees and flowers make me say SUBHAN-ALLAH.( "Praise the Lord!")
SUNDAY, Kids woke up happy. Bilal and Ammar end up in the yard right after getting up. After bringing Zahra and Khansa downsatirs, i return to get Abeerah and i could not beleive on my ears. she was sitting on her bed and whistling. so cute. She have not done this in a years. She started to whistle since she is one. And always whistle while playing. Who ever heard her, get surprised of how nice tunes she makes. She looks much happier and so much alert. After breakfast, i took girls out too and we had a great day out door. Girls walk around. I cook on the grill and feed every one out door. Only time i need to come inside when i needed to change kids diapers. It get cooler in the evening and zahra start to sneezing so i bring every one inside. It was quite a struggle bringing Ammar in. He would stay outside, from dawn to dusk if i let him.
Thursday, May 3, 2007 2:49 AM CDT
Abeerah and Zahra been sick since Friday. Bilal also came down with throat infection and almost lost his voice for while. Khansa did not show any sings of sickness but she been very slow. Hardly eat and hardly move her own. Monday all 5 kids were in beds with some thing. This been going around in some other families we know. Kids sick and staying home means, busy busy for me between cooking, feeding, diaper changing and medications timings.
I am really worried about Khansa and my heart aches so much for her these days. She seems very very weak. Hardly sits her own and do not eat much. Monday night she chocked bad while i was feeding her. I was trying to feed her since she have not eaten much all day but she would not chew her food and just keep it in her mouth. i was waiting if she chew and swallow her bite so i can give her other one. Then i notice that her eyes starting to get bigger and tears starting to fall from her eyes. i though she is choking on the bite but when i look in her mouth, food was still in her mouth. She was unable to take a breath in. I took the food out starting tap her back and doing all what i think will make her breath. Bilal was watching and he ran to get the phone. It was some moments of struggle before she was able to take a breath but my heart just felt stabbed million times in those some seconds. My poor baby. Thank Allah, she was able to take a air in. I was really scared. Later it happen again while she was sitting and all of sudden she get up and start running in the room. That was strange since she been very quite and did not get up her own lately. I grabed her before she could fall, she looked all red but right then she did took a deep breath. i do not know, if she forget how to breath or too weak to breath because i do not see if she is congested. I do not know why this happened. I sit beside her all night if she choke again. By morning, my throat hurts and i felt sick. Zarrar came home and feeling the same. Girls woke up looking good. After sending kids to school, i took some rest but did not feel good sending Khansa to school. Call the school to see if she is all right. Her teacher told me that she is slow and look tired but ok. They also weight her in school on my request since i am worried, she looks very thin like skin on bones. Teacher send the note that she did not lose any weight. Abeerah came home feeling hot. Khansa looks very tired. Bus driver said both do not look good at all. Zahra school call and report her not feeling good, bad runny nose and also bad diarrhea. My poor princess sick again. She have a bad winter and still bad so far of spring. My self hardly could stand so i call Carmen for help. Rest of the evening Girls and i just rest and watch lots of Barney. Wednesday girls stayed home but looks better. Bilal and Ammar doing fine. I am not happy with Ammar's progress. He do not seems having much improvements. It really frustrate me when i see him loosing his alphabets, words and singing poems. He only use words when i constant force him other wise his head banging will tells me that he need some thing. In the evening girls looks better but dirty. Give them warm baths. Zahra really enjoyed her bath time. I love when she is happy. We had a visit of two nice ladies from MAKE -A- WHISH to fill out new forms since its been while and old forms are not good any longer. I hope we can come up with some wishes this time.
Thursday, April 26, 2007 8:01 PM CDT
It been a little longer than usual that i update here. Its been so busy here that i hardly could come to turn on my computer for days. So i really apologize for all who are waiting for the update and who are waiting for reply of their email send to me.
Weekend of April 15th, There was a wedding in Indiana and whole entire family was getting together there from different places. But since Zarrar taking a class, we did not go for the wedding but miss it very much.
April 16th - Monday, Zarrar started his class from his job so he left the house 6 am. Since it was raining bad and flooded most of the roads and highways, Some area school were closed too. i did not send girls to school. Send Bilal and Ammar to school since their school are in town.
April 17thTuesday, Zarrar left for his class. Make kids ready for school. Bilal And Zahar bus was coming at same time which is 7:30 am. Bilal's bus stop is about 2 blocks away and about 5 minutes walk from home. So after making zahra ready, Bilal and i ran to bus stop but there were no bus yet, Zahra's bus came front of our door and beeping horn so we both run full speed back and put zahra in the bus Then saw Bilal's bus already left the stop so we both ran to the next bus stop and hardly catch the bus. Great, at least he won't be late since his teacher get really angry if he reach school late. After sending kids, i was got so tired that i just landed on the sofa and could not move a inch from there till kids get home.
Khansa's Birthday celebrated at school by her teacher and her Aid. I did not do any thing home other than cut and eat the cake send to us from her class. I felt very sad watching her grow so big and knowing she is 9 now and already in her 3rd and last stag of the disease. This disease is really taking over of my poor girl.
Wednesday, thought i could do this catching bus thing since i done it yesterday. but before i left to drop Bilal to his bus stop, Abeerah and khansa's bus call that they will be here in 10 minutes. WHAT...... well First Zahra's bus came and behind Abeerah and Khnasa's bus came. Put Zahra in the bus fast and told other bus to wait, then ran full speed to catch Bilal's bus at next stop which is three block away. Running back so fast...I tell you that i could win Olympics with that speed. I am sure people must be laughing at me watching me running. Came back and i was so out of breath. Then this bus driver wants to leave. Khansa was only one ready so i send her to school since bus driver was in rush. Then deal with Ammar's tantrums making him ready and putting him in his bus. Make Abeerah ready and drop her at school. Meet teachers and therapist at school. pick up meat and groceries and drove home very tired. Wait for Ammar's bus but bus did not came on time. Usually bus comes 2:30pm and then Bilal's bus come 2:40pm. It was time to pick up Bilal from his stop but Ammar bus was late. It came at the time of Bilal pick up. Bus driver told me that they add more kids and now on this time they will be coming. MY GOD. I am back on running but this time Ammar was in my arms so it made it little hard. Well Bilal bus late for minute or so so i made it there. Rest of the day just take care kids. Girls been doing good lately.
Thursday went the same of running back and forth from the buses since 3 buses coming at same time at 7:30am. I get very tired after sending kids to school. I want to take rest after sending them to schools but i been working on fixing girls and boys rooms. I need to buy a beds for girls and i been trying to make it to IKEA for while. Finally i was able to buy the beds for them but i learn it hard way that IKEA sells every thing separately. To complete a bed i made three trips back and forth.
April 20th - Friday, Bilal bus came early and left while i was putting Zahra in the bus so i dropped him off after Ammar left to school. I was happy it is the last day of my running since they are having a spring break next week. Then Zarrar will be back on his night job and able to take Bilal in the morning to bus stop. Zarrar's cousin reception(walima) was in NJ and we were invited, i also been busy sewing my dress for the Mahndi and walima. All family members were coming to NJ to attend it. I was hoping if my sister and her in-laws comes so they can stay with us. Friday every one came but my sister did not came. Friday Carmen watch the kids and me, Zarrar and Bilal went to attend the function. It felt really different to me walk in some where without the strollers or diaper bag first time in a long long time. Meet bride, groom and every one. Carmen took care girls good.
April 21st - Saturday was reception and Carmen came over again to watch the girls and Ammar. I wanted to take them with me since i sew really pretty dresses for them but Zarrar think, its better if they stay home and relax. My all in-laws, cousins, uncle and Aunts were there. There were so many little girls in their pretty dresses. watching them make me really sad. I miss my daughters not with me. How come they have to miss this wedding when every kid in the family were there. I had a hard time hiding my tears so we left early. Zarrar's niece(Leila) came with us and she spend night here. Liela had a good time playing with Bilal.
April 22nd - Sunday, we invited over the new couple, all my in-laws and all the family visiting from Indiana. It was a busy busy day for me. After taking care the kids needs and breakfast, help Zarrar clean the yard. Then drove to different stores for meat, groceries and other need for the party. Clean the house top to bottom. Dress up kids. Then cook and cook. Every one came over and Zarrar start the BAR-B-Q. Every one had a great time. Bride and Groom looks very happy. We make them cut the cake specially made for them. Girls stay in back yard and was very happy seeing so many people and kids around. Every one left by midnight. I clean up and went to bed very late.
Monday kids started their spring break. Only Zahra's school was open but i was so tired to send her to school. Zarrar left early for his class. We all stay in and have a good time watching Tv and playing. Carmen came in the evening. We took kids in the back yard. But when we came in Zahra started to sneeze. Zarrar came and did not look good at all. He complain feeling sick and went to bed early. Zarrar's one cousin(Aisia) came over to spend the night here. I had a great time talking all night with her.
Tuesday, Zarrar call in sick not feeling good and also call sick for Zahra. One good thing happen for Asia's stay that she talk Zarrar in to get hair cut which he was growing long for 4 months. In the evening i drop her back at my sister in law house where all were staying.
Wednesday, Zarrar again stayed home being sick. Zahra also stay home and i call in for not coming rest of the week since all her sibling are home, it is nice if she stay home too and i get break for some more days. It rain most of the day and got cooler so we all stay in and stay warm.
Thursday, after breakfast, i made kids ready since Bilal been really crying for not going any were for his days off from school. I took kids to the closer by small Zoo. All the animals are not even out yet. But it was fun. Ammar love seeing the animals.
We came back right on time of Bilal's class at musjid. After class, Zarrar drop him at his cousin's house. I hope he have a great time there. There is still one more vacation left. hoping to make it speacial for him as well.
Tuesday, April 17, 2007 4:11 AM CDT
KHANSA!!!!!!
She is 9 years old today.
Needless to say that its been very busy here. Zahra did not feel too good whole week long and she miss lot of school. The days she made it to school, came back with a note from school about not feeling good. She been coughing, runny nose, allergies, teething discomfort, diarrhea and then ear infection. My poor little princess. But through out she been very happy. Hardly cried and i am so thankful of that. Abeerah and Khansa also miss couple of days of school not feeling too good.
Zarrar attend parent teacher meeting with Ammar's teacher and his case worker. I could not make it due to my migraine head ache that day. Also end up canceling Abeerah's EEG on same day. These nasty head aches comes with out any warning. I been waiting for her EEG appointment for over a month. Now there is an other month to wait. They are so booked. Its like whole NJ is getting there EEG done these days.
Zarrar meeting with Ammar's teacher went well and hopefully new commitments will took place soon. Here at home, Ammar is too much to keep an eye on. Since he learn how to open the bath room door by himself, he is ending up there every time i blink my eyes. So we started to lock the bath room door to keep him out BUT Bilal who i recently realized and should talk to a Dr., He pee so many times and each time he reach to the bath room on the last second. Then there is this screaming to me to unlock the door for him. And i am running faster than i can so he don't have accident out side the bath room. It does not stop there. Since i ran upstairs from middle of something like diaper changing so i have to run back at the same speed. Teaching Bilal over and over for locking the bath room after getting done there but he still did not learn yet. But long story short that Ammar will be found sitting in the toilet or shoveling out water from the toilet and throwing on the floor or every ones tooth brushed flushing down the toilet or used scrubbing the toilet and the floor. And i have to end up cleaning and giving him a bath. Now please multiply this whole thing at least 3 to 4 times a day and on weekends couple of more times. Also he learned to climb through the child safety doors and it takes no time that he get out. He learn to open juice boxes himself And getting his hands on them and drink them one after other till i found him. There is no place safe or higher that he can not reach.
Its been raining here all weekend long and it so heavy rain that not seen since 1988. Our basement flooded. Also Bilal's room which i was painting that morning, started to leak. Zarrar had to climb on the roof in heavy rain to check and try to clean gutters to make the flow better . But buckets did good job catching leaking water. I am thankful that we are safe. There many people's houses are under water with all the flooding.
Zarrar is taking a class for two weeks and he will be leaving early morning for class. That means no help in the morning to take Bilal to his bus stop. Zahra's bus comes at same time of Bilal's bus. Only way is to drop Bilal to school after every one leaves which means Bilal have to miss his first 1/2 hour of school every morning.
Monday, April 9, 2007 10:28 AM CDT
Could not update earlier since so much happening here. First, Abeerah was very very hyper for three days. It started from Wednesday night. No sleep and staying very hyper, jumping and giggling all night. Thursday, Hard to make her ready for school since she was not staying still for a moment. Bus driver and aids had a difficult time. School also wrote that she was very very active and grabbing every thing. After school bus driver was shaking his head and telling me that she is one hard to handle girl, Well i know that one. she did not sleep again and stay up very active. Keep getting out of her bed. Garbing her sisters while they in sleep. She was not crying or looks like she is in pain or some thing that i should be worry about but she is extra loud to making every one else get upset. Finally i gave her one of her sleeping pills that prescribed by doctor last year but did not helped in any way. I thought of giving an other try to that. Give her med and after an hour she fall a sleep. Great. Friday, Kids were off from school. Abeerah slept till 11am. Happy that she was able get sleep. But she got up and went right back to her hyperness. It was hard to handle her when she is on the move. she keep pulling hairs of her sisters and hurting them. But good side of this that she was getting up and stand her self and walked around in the room by her self. Khansa also cry. She did not feel comfortable sitting. Her feet are cramping time to time. Then Zahra join with louder than she could with crying and jumping together. Tylenol made them little calm. Carmen came for help. I want to say my special thanks to Isabel Jurado Foundation who grant us with extra hours of respite help. So i will be having Carmen for help on Fridays after 3pm till girls goes to bed. While Carmen did Laundry, i made girls and boys ready, clean the van, load strollers and we pack kids and drove to CHUCKE CHEESE. We spend 3 hours there. First Zahra cry for while then she play around. She loved it. Every one had fun. Coming back, I had to drag Bilal and Ammar from there. Both kids were very angry all the way home. Carmen help me in every thing. It was so nice to have 2 extra hands in taking kids out for fun. I did not had this luxury before.
Saturday, we just stay home since it was cold out. Abeerah stay calm and sit nicely on the sofa and watch TV but Khansa and Zahra cry on and off. Zahra kept garbing the tooth had filling done. I think that tooth really bothering her but Dr. think that one is fine and she is crying because of the teething. This teething is bothering her for long time and process is going so slow. Her front tooth started to come out with BIlal's tooth 2 month ago and we were raising that who get the tooth out first. Bilal's tooth is already grown more than half way but Zahar's is just still there without any signs of moving. Poor girl. Ammar been up to some thing every 5 minutes. He gets very angry and use his head against my body. Bilal finally went to see his cousin and spend some time with him. He came home late but very happy having a good time there.
Sunday went alright but busy. Zahra and Khansa stay upset. Lots of work, Cleaning, cooking, feeding and diaper changing goes non stop with kids on weekends. Cut girls nails. They always grab me tight with finger tips, digging nails in to my skin and nails always scratch me up even with very tiny grown nails out. Cutting nails is a whole a lot of struggle. After putting kids to bed, Bilal and i paint little in his room changing blue to light yellow since it is going to be a girls room soon. Still so much work need to be done there before girls can really sleep there. My health is slow me down so much. My back, My feet burning and terrible allergies (sneezing every 2 minutes and watery eyes). I hope i get to finish this soon. Wake up three times at night with Khansa's crying out loud since her feet keep cramping up. So painful. Breaks my heart.
Zahra's spring break did not went as i wanted to be and planed it. Wednesday Rain all day and thursday it got really cold and Zahra did not feel too good either. We did spend some time together, snuggle and watch TV. Finally on Friday we went to Chucke cheese and had a good time. Saturday cold again. sunday i made her big stack of pancake since IHOP was in our list of "to go places on spring break". (We use to go there and she loved eating pancakes there. )
Tuesday, April 3, 2007 11:45 PM CDT
Last week been one of busy week. Satrting.... kids having difficult times.....Bilal's room exchanging with girl's.....lost my diamond from my wedding ring and looking every part and corner of the house......and then Kids and myself got sick.....on top Carmen(baby sitter) took time off. I want to Thank you all who think of my family, stop by and check on us and keeping us in their prayers. Some time every thing seems so difficult to handle but with a moment every thing just gets smooth out then i thank GOD knowing some one out there must prayed for me and things got easier for me. I always pray from bottom of my heart for your happiness in return.
Allhamdulillah, every one is better now. After missing school on Monday kids returns to school today. Zahra is having a spring break so she is staying home with us this week. Usually all kids get vacation at same times but this time Zahra's school closed earlier than others. I am happy with this. This way i will be able to spend some time with Zahra alone. I have many things plans for Zahra to be out. Off course we have chucky Cheese in the list since that is her favorite place. I hope weather co operate with us and rest of brothers and sisters stay well.
Zahra's spring break week. Monday---Stay sick and stay in with all her siblings. Jump around and watch TV. By evening had a long bath and get all clean up.
Tuesday--Zahra slept till 10m, had breakfast with parents and then watch TV. Get hug from WILL(friend) who came over. Later spend 3 hours in the back yard and have fun running and then jumping in the trampoline with Ammar and Bilal. ( I love her smile. I can not put a price on the moments when she is happy and laughing. ) Tayyaba.
Sunday, April 1, 2007 8:11 PM CDT
Need your prayers. Its been very busy couple of days here. Kids got sick one by one catching from each other. Abeerah, Khansa, Zahra and Ammar are sick since Friday and myself cought it by Saturday evening. Thank Allah Bilal is well but having his ways to get my attention. So its been a lot to deal with cranky kids and all wants me to hold them. Feedings, diapper changing and medications on times is a quite challenging when i am falling down myself. I should split my self in 6 pieces so 5 of me can take care 5 kids and one of me can take some rest with the fever and all. I hope this sickness goes away soon and weather stop keep changing to cold.
Tuesday, March 27, 2007 10:00 AM CDT
Hi every one. I am so thankful for having some great days with girls feeling better, calm and happy. Zahra have some crying on and off with her teething but i am blessed to have her smiling after her pain medication started to work.
Thursday, girls did great. Ammar sneak in the kitchen and got his hands on my favorite jar of peanuts and he dump the whole thing front of girls in their play room while i was cooking dinner. Before i spotted and try to pick all peanuts up fast, girls eat them quit a bit. Next day 4 kids started diarrhea. It is so amazing that they can eat peanut butter ok but couple of whole peanuts cause stomach problem. I end up changing non stop diapers 4 kid diapers and feeding lot of fluid and medication.
Saturday i took girls to Musjid for a Aqeeqa function. It was great for while meeting every one but it turn in to some disaster when Zahra started to cry out loud, Khansa start winning and Ammar starting to take his clothes and diaper off again and again and again.................Kids were laughing and calling him names.....
Sunday went beautiful. We had a visit from a friend with a great heart. we exchanged some emails before but met first time. She spend some hours with us and play with my kids. Girls were happy and laughing with her. I can not tell how good it felt when some one give attention to my girls and play with them when most of people don't even want to come near them. Thank you Juliana for all your love and support. You made our day so beautiful.
Zahra did not feel good by the evening. She felt hot and her runny nose made her very cranky. She stayed up all night being upset.
Monday, After sending Bilal to school. Call Zahra's bus for not going to school. Ammar woke up crying out loud and do not want to get down from my arms so i could make Abeerah and khansa ready for school. In the end i call every one's buses for no pick up for today. Girls woke up late but happy. Kids did great rest of the day. After school, Bilal went to musjid and came home so happy that he got excellent in his learning. Zarrar was happy that Bilal is doing good. But later i find he cut quite bit of Ammar's hair very short. Oh my....BOYS...things can't go straight for one day.
My brother's wedding went well and couple is happy to find each other. My best wishes are with them.
Thursday, March 22, 2007 10:32 PM CDT
Girls been doing good in health for few days. All kids made to school three days in row without being sick in cold. Abeerah having problem with sleeping at night last two nights. Zahra had some crying episodes here and there with her teething. But i am happy that girls are better. When they are happy and calm, it feels like my world is great but if they are not happy or not feeling good, every thing feels like falling on me from every where.
Ammar having a great time destroying things around the house. Spreading glue on the floor to writing with permanent marker on the furniture. Making the bath room blue with the toothpaste painting to clogging the toilet with whole roll of toilet paper. He is always on the move. Now he even learn to get out the play room by climbing through the child safety doors. One hand he is too much to handle but other he is too cute, Masha-Allah. He singing songs in his own language all the time. We did not see whole a lot of difference in his communication yet but it is moving and very very slow progress. I am very desperate getting him more speech and ABA therapy since he is not getting any right now ABA therapy at school and he was doing so good with early intervention.
Bilal is doing good. He had some terrible days but now he is back in doing good. Good in school and good in Musjid.
I am in process of exchanging Bilal's room with girls room. Girls room is little bigger than Bilal's room and Bilal room is too small to add another bed for Ammar with all his stuff all around. Walls are very much damaged and plaster keep falling down and floor is really messed up in Bilal's room which is lot of work to fix it before giving to girls. so i am busy busy.
Can not wait for this pile of snow to melt and have some great days so i can take girls out. Kids can play out door and i can do some digging and planting.
My younger brother is getting married tomorrow back home. I am so happy for him but very very emotional and sad for not able to be there for his wedding. He lived in here for 7 years and helped me so much. Specially on kids vacation days to help me out and i able to go out places with kids. He flew from IN to NJ, every time i needed him. I miss having a brother around. This is my 5th sibling's wedding that i am going to miss. I did not attend any of my sibling's wedding yet since it is not easy for me to travel with all my kids for 18 hours flight and 4 kids in diapers.
All my prayers goes to new couple for a happy loving life together. Ameen.
Tuesday, March 20, 2007 9:51 AM CDT
Thank you all readers for stoping by, checking on our girls and signing the guest book. All your prayers and support means a lot to us. Thank you.
FRIDAY. Snow storm closed Abeerah and Khansa's school. But Ammar, Bilal and Zahra's school was open but then they had an early dismissal due to weather got really bad. We had freezing rain through the day and night. Zarrar had to go to work in a bad weather. Zhara and Khansa was very cranky all evening long.
SATURDAY After done taking care kids morning needs and breakfast. I help Zarrar to clean up the snow. Then Bilal, Ammar and Zhara play in the snow. Ammar did not like walking in the snow but Bilal and Zahra had tons of fun. Khansa been very upset and she was really beating an scratching any one gets closer to her. I kept her in the living room so other girls don't get hurt. Give her pain medication if there is any pain is bothering her. Later received a call from my brother in law for invitation for the birthday of their two kids in two hours. WOW. Zarrar watch the kids and me and Bial drove to close walgreen to buy some gifts. Came back and wrap the gifts. Zarrar took Bilal and Ammar since it was time to cut the cake. All three girls was very very cranky. So it was great to take them out for a change. Girls love riding the car and going out. Make them ready. Zarrar came back to pick us up. Zahra was so happy there. She laugh and give hugs to every one. We eat cake and meet every one. Came back and put kids to bed. Qasim (Zarrar's nephew) came over from boston and he worked with Zarrar on computer till late night.
SUNDAY My sister in law with her daughter came over and we already had the son over here. We kept the kids and let my sister in law go for her business. Great morning with girls been happy but did not last too long. Khansa started to cry and very upset and later Abeerah join her. It took a while both to calm down. Some chat with Qasim. He helped us baby sitting when we were in Duke and i always have so much respect for him and we always love to have him over. Bilal had a good time with his cousin Leila. They were laughing so hard with her new laptop and taking funny pictures then he turn to me and tell me that he wish his sister could talk and he could have fun with them. After My sister in law pick her kids up, i start taking kids up for their bath. Give Zahra, Khansa and Ammar bath one by one and dress them. When i was bringing Abeerah for her bath upstairs, i got hurt in my lower back so i just put Abeerah to bed. Bilal took his bath. I hardly clean up and went to bed.
MONDAY Could not sleep well with my back pains. Wake Bilal up and he got ready for school. i did not had any strength in my back to pick and carry girls up and down the stairs so i call buses for no pick up. Make Ammar ready for school since he walks and follow me. Abeerah was up so i take care of her on her bed and feed her breakfast. Khansa and Zahra stay sleeping little late. When all up, i bring them down stairs. I watch TV with them and had good time. Boys came home. After dinner, Carmen came over to watch kids since i was going to the special need parents meeting. It was really great. I learn so much and i get to talk to board members. I did not even know there is people exist who elected by people and they are there if you have problem with school district. I am so glad that I met them. I hope i can find help through them with Ammar's program. When we came back Carmen was putting girls to bed. She is really good with kids and i am happy to find her. This is the first time i am not rushing home or staying in panic while leaving kids with baby sitter. I hope she stays with us.
Thursday, March 15, 2007 10:38 PM CDT
WEDNESDAY After sending kids to school, I took care Abeerah and bring her downstairs. Give her some juice to drink since she was not allowed to eat any thing 8 hour prior to the Anesthesia. Write some bills and then got dresses and make Abeerah ready. By noon we were at the St. Joseph hospital. We waited and waited for our turn. Then Zarrar had to leave since kids were coming home form schools. He wants to be there for Abeerah going under anesthesia since she is a Dad's sweet little girls and he always go in for her but Extra waiting changed our plans. Abeerah and i waited more. Abeerah started to get little cranky for food. Finally we call in. Her Anesthesia went really smooth. She fall a sleep no time on her wheel chair. I send out in the waiting room. Then i wait again for 2 hours. Watch TV and went through all the magazines. We told 3hours but it took 2 hours to finish her MRI. Anesthesiologist came out and told me every thing went well. Abeerah starting to get up. She was calm. Did not struggle like previous times. Nurse Kristen was so nice. She even let me go in and see the big machine do MRI and explain me all how it works. We all done from there and came in the lobby waiting for Zarrar to pick us up. Call home and Carmen reach there to watch other three kids and Zarrar had left for Bilal's class. So all we could do is wait.
Abeerah drink well. And she was so calm and smily. So cute. In waiting and waiting for zarrar to pick us up, i met an old long lost friend. she give us great support when girls got diagnosed but some reason we lost our contacts. I was really happy to meet her. So when Zarrar showed up late, I was not upset with him thinking every thing happened for some reason.
CArmen did great job watching Zahra, Khansa and ammar. Abeerah eat well and did well rest of the day. Find several small scratches on Ammar's right cheek and one big one next to his ear. It seems like some one scratch or bite him bad. I ask Zarrar and he said he came back from school like that.
Before putting girls to bed, Zahra start to cry out loud. And cry for 45 minutes really out of control. Then she fall a sleep. All girls and Bilal sleeping tight but Ammar kept me up since he took a nap after coming from school. He was climbing every place he can and getting in to every thing till late night.
I hardly slept for 1/2 hour when i woke up with Zahra banging on the door and crying. I bring her down stairs, Give her pain medication and put barney on for her. She stay up rest of the night jumping around and watching Barney.
THURSDAY. Start waking kids up and sending them to school one by one. Abeerah was very tired and did not stand at all. I made her ready holding in my arms. Before taking her on the bus, i felt she is hot. So i kept her home. After eating breakfast Abeerah fall a sleep. I also took rest. Talk to Ammar' s teacher about the scratches and he said he went for lunch and AMMAR came back in class after recess like that when three aids with him who were watching him and 5 other kids have no idea what happened to him. Thats really made me upset how come they are so irresponsible like that.
Zahra came home in dirty diaper and crying with rash. I took care of her. Give her pain and her reflex medication. But she cry and cry out loud. Every one else started to get made and upset with her non stop jumping and crying. I took her out side. Walk around with her but she seems very upset. I let her jump on the trampoline for hour. It started to rain so i bring her in. She looks ok and watch barney for two hours and then start crying again. I am not understanding what is bothering her. She keep pulling her teeth, dentist think her teeth are fine just she is teething 6 teeth at same time. Is teething making her cry like that? or she is just over tired. This guessing game is really sucks.
Khansa had a bandage on her finger and two swellen fingers. There was skin broken on her middle finger. She most probably bit her self hard. When she is upset, she bite her fingers.
Abeerah did great. She seems fine and really smiling a lot. But seems very weak. And eat very slowly. She kept food in her mouth and forget to chew or swallow. Feeding her took quite some time today. After Helping Bilal home work, put every one to bed.
Wednesday, March 14, 2007 7:47 AM CDT
SATURDAY. March 10th Woke up with Khansa crying. She had a poop accident all over her bed and zahra jump on her bed and get effected as well. So i start my day giving girls bath and scrubbing head to toe. Ammar woke up cranky and use his head bumps when thing don't go his way. Give Ammar and Bilal a bath. Will(friend of ours) and his family came over. We had a great time. Beautiful daughter Eva took my heart. She had no problem sitting next to Zahra and Khansa and play with them. She even give them hugs. So cute. Not many 3 year old girls wants to do that. Husna took Bilal to the library. So nice of her, helping me out with Bilal's books problem. Kids did great rest of the evening. We just stay in. I had to clean girls room big time. Put every one to bed. Zarrar took a night off after a long time. Having a man in the house at night felt safe.
SUNDAY- MArch 11th kids woke up early but Abeerah did not get up. I keep checking on her but she was in her deep deep sleep. Usually it happens when she had seizures. I did not see any signs of seizure. It is advised that not to wake the kid up after having a seizures but i was not sure if she did had one. I let her sleep. After noon try to wake her up again. I wash her face while she was hanging in my arms and bring her downstairs. She fall back to sleep.
Weather was nice, Bilal, Ammar and Zahra play outside and jump on trampoline for while. Zahra and Khansa was very quite today. Later i saw Zahra playing with Bilal's stuff animals. She carry each one in her hands and bring her close to her eyes and then put it back. Last she hold a koala in her hands and give him hug and kiss. That was so cute. She did not hold any of her toy in her arms or give a kiss and hug in a long time. Zarrar left to work. And Bilal work on his homework for school. After putting Abeerah, Khansa to bed, I wake Abeerah up and feed her. She was still falling around so I bring her upstairs. Kids went to bed but Abeerah stay quietly sitting on my bed next to me. Every time i lay her down, she get back up to sitting. She sit for while then late night she fall a sleep.
Monday - March 12th. Woke up late. My alarm clock is not helping me out. Actually i am not good getting up with alarm clock. It can run for hours before i can notice it but i am good with phone rings. I hope some one invent a alarm clock that rings like a phone bell.
Well, first i was late and on top i had allergies. With sneezing and runny nose itchy eyes and in rushing up and down the stairs, I made 5 kids ready. After every one left to school, My allergies really kick in so i took medication and did some rest. Kids came home one by one. Carmen came over for help. After kids got settle down, i went for grocery shopping which i had not done in a month. I did a huge shopping. After putting groceries away. I feed dinner to all and started to make kids ready for bed. Zahra cry out loud with her teething pains. She cry for hour with discomfort till medication starting to work then she fall a sleep.
TUESDAY - March 13th After kids went to school. I got dress to meat Zarrar at the dinner where he was meeting some one. But before i left he call me that he will pick me up since his meeting got canceled. We both went to eat breakfast. It was nice but could be great if Zarrar was not so sleepy and tired. He went to bed right after getting home and i watch news and some other shows here and there. Clean up and then it was time to get Ammar, then Bilal and then Zahra, Abeerah khansa came home from schools. Weather was really beautiful today. After Bilal and Zarrar came back from the musjid, Kids play out side. Abeerah was calm and stay lying around. Khansa had her moments of cry here and there. After dinner, Put Kids to bed and did some cleaning around. Then went to bed.
Tayyaba Beg.
Wednesday, March 7, 2007 0:18 AM CST
Thank you for keep checking on my daughters. I really appriciate your prayers and support. It helps a lot to go through our hard times. Thank you.
MARCH 5th-MONDAY Abeerah is not feeling good at all. She is very very hyper and non stop crying out loud. All last night and today. Only Bilal made to school today. Ammar still had fever. Girls had no fever but have to be 24 houres without fever to go back to school. Abeerah been bumping her head in to walls, floors and screaming out loud. Zarrar try to hold her for while but she keep getting out of his grip. He give her message to calm her muscles down. I put her in her chair but she bang her head back and forth. I call Ped to talk to the Dr and to find out why i did not get a call for her MRI schedule yet. They told me they just got papers fax from other Dr. today and they are working on it. When i was feeding girls breakfast, Abeerah start having a seizure. Call her neurologist Dr. Pattel for medication but she said, i have to take her to ER. before i satrted to get ready, our pediatrician call and ask what is going on with her because neurologist call her, she ask to see Abeerah right away. I dress Abeerah, and i tell you, that is the longest time i ever took to put clothes and shoes on her since she was moving too much. Zarrar and Bilal left for musjid for the class. Baby sitter(Carmen) came over to watch the other kids and i left with Abeerah to the Dr.
Abeerah was very hyper and keep slipping out the seat. I had to make three stop middle of my driving to fix Abeerah from choking on seat belt. I guess i need to order a hornest for her for times like this. Before i went in the office i stop by to ask Jean about the appointment she is making for her MRI and EEG. When she saw Abeerah's condition, she did speed her calls. In waiting room Abeerah had quite a show for all the young kids who never seen a screaming disable girl before. Dr. Tantawi checked every thing but she can not tell what is bothering her. She gave me medication for her stomach since she think there is virus going around that causing fever and stomach pains. It could be that since she did had two loose BMs since morning. From there, i call and ask Dr. Jackson(dentist) office asking to look at her teeth if that is bothering her. It was not easy to drive with her today. At red light, i try to fix her belt when it turn green and i had to face some beeping horns in the back. Dr. Jackson checked her, and he don't think there is any thing wrong with her teeth. He clean them and did fluoride thing. He even help me with the Abeerah's stroller down the stairs way back. He been really amazing dentist and always there to help us in emergency teeth check ups. Way back Abeerah sat like a baby. Very quite and calm. I had not seen a moment like that in last two days. At the store pick med and some bread for the house. Came home, She sat quietly and Zarrar keep asking what Dr had given to her. I think Dr. jackson did some thing to calm her. May be it was her teeth after all ...Well.....our excitement did not last for long and Abeerah start in that crying, hyper and banging mood again. I gave her all the medications( for pain, sleeping and her stomach). It is just really heart breaking to watch her and not knowing what is bothering her, how to help her and what is the next Dr. i should take her to. Trying to just hold her in my arms, i am thinking....What MPS had done to my daughter.MPS does stinks bad.
Finally by 11pm she fall a sleep. I hope she sleep through the night and wake up all better. May ALLAH help my poor baby girl.Ameen
MARCH 6th-TUESDAY By the grace of GOD, things were better today. Abeerah and girls slept through out the night. Send Zahra and Bilal to school. Khansa was sleeping very tight, Zarrar came up and he was amazed to see her sleeping, These moments comes rarely and he did not want me to bother her at all. Ammar pick up fever again last night and did not look good so he stayed home. Khansa woke up happy. Abeerah slept till afternoon. She wake up and stay very very calm and quite. Me and Zarrar was so happy to see that. Both sisters sat, watch TV and did not made a sound.
Teaneck radiology call and told me that Abeerah's MRI can not be done tomorrow since they got her chart and anesthesiologist have concern with sedating MPS child. I call some other places and then pediatrician's office call with me but no one have any early appointment for her to do MRI. Some don't take our insurance and some don't have sedation available. Dr. want this to be done as quick as possible. so we back with Teaneck radiology. Anesthesiologist going to call us to let us know tomorrow.
My friend came over to see Abeerah since she heard her crying over the phone. She said Abeerah looks really good today. I kept her on stomach medication and feed her soft food. Ammar's sickness made him very cranky. He really beat me up using his head against my body every time he felt ignored.
Bilal and Zahra get back from school. Zahra was very happy. I cook dinner. By 4pm, Abeerah start crying loud again. That put me in tears. I call a friend ( a MPS child's mother), she was at the MPS conference in DC but she was already back at her hotel. She thought, it could be high pressure building in her brain causing her banging her head back and forth. I give her message of her head.
Later I gave her Pepto-bismol and that worked like a charm. She just quite down in no time. I love this pink medication. So it was her reflex bothering her. Why i didn't i thought of that before. And why Dr. did not even come to think of that. I feel terrible. How much she had to suffer. How awful mother i am. Happy smily Abeerah came back. She even laughed and give me a hug. We play "pat a cake". Other than Ammar's head bangs, Kids did great rest of the evening. Put every one to bed. I am so thankful to Allah for making things all better. I felt so light. I pray they continue to do better.
MARCH 7th- WEDNESDAY Went wonderful. Abeerah woke up very active but happy. All kids made it to school and i get to do some stuff around the house. I also took a nap. What a great day. Girls came home happy. Abeerah was very hyper and smiling a lot. I am keeping her on her reflex medication to cure her reflex problem. Ammar looks cranky and fall a sleep in the evening. Put girls to bed but Zahra and Abeerah not even near a sleep. They keep jumping on their beds and loud sounds. Ammar also woke up at night and fuss and push me around one place to other. And use his head when he is angry. Ammar, Zahra and Abeerah kept me up late night. By 4:am every one fall a sleep.
MARCH 8th-THURSDAY. Zarrar was coming late home in the morning so lot of running around and carrying every one to the buses my own. Send every one to school. I had to go to musjid for the ladies get together in remembrance of my mother in law since its been a year she passed away. Not having much sleep last night and tiring morning gave me head ache which turn in to migraine head ache. Sit by the toilet for having yuky feelings. By the time i could stand my self up and reach to the Musjid, program was almost over. Meet all the ladies but i could not enjoy it since my head ache was really bothering me. Came back and stay next to the toilet againto threw up. Feel really bad rest of the day. kids came home and Ammar was cranky and very sleepy. Teacher wrote he slept during the day at school. He do not have any fever but he looks like he is coming down with some thing again. Zahra cry out garbing her teeth. Dentist can not tell how long it will take for her teething pains are over. I hope her teething process speed up and give her some relief.
Abeerah was happy and teacher wrote she was very happy and vocal today at school. Khansa stay as usual, quite and calm and cry every 20 minutes or so if she can't move her self.
MARCH 9th- FRIDAY. Ammar did not feel too good. He is not himself since he get out the high fever beggining of this week. Very cranky and ready to bang his head any minutes in to any thing. I kept him home. Bilal and girls went to school. I catch a fever and stay in bed with Ammar till Ammar stay in bed. Since yesterday and today no cleaning have done. House is a mess and too much laundry pilling up. Call Carmen for help with loads and loads of laundry and baby sitting tonight. Bilal bring a big note from school. He is having some trouble at school with his teacher and his class mates. He said every one is lying on him to the teacher and she only hear others than him. He been doing good for a while and here we go again. This boy worries me so much. Kids did great rest of the day. We all went to bed late.
Monday, March 5, 2007 3:25 AM CST
Feb 24th--Mar 4th
Sunday, All stay home and relax. Kids did good. 5 Kids baths and struggle for nail cutting is quite tiring for me. Make every thing ready for kid's going back to school after winter vacation.
Monday, Due to snowing, girls school were closed. Every one stay home. Ammar did not feel good all day. Every one just stay in and stay warm.
Tuesday, Send Abeerah, khansa, Zhara and Bilal to school. Ammar was still sick so he stayed home. He was very cranky most of the day. He does not let me put him down to do any thing.
Wednesday, kids went to school. I took a nap to make up with my sleep since kids been home for over 10 days and i did not get enough sleep all those days. At afternoon, call kids pediatrician to discuss for Abeerah's condition and schedule for her brain and spine MRI and EEG and fax her all the papers.
Thursday, After making 5 kids ready for school and doing all the washing, brushing teeth, making hair, changing diapers(except Bilal's), putting jackets and shoes on, breakfast to lunch boxes and then carrying them from 2nd floor to the 6 front stairs to the buses... made me really tired. I just took a breath and and drink my coffee and make some planes for taking care some things today when Abeerah and khansa's school principle called to let us know that khansa fell from the bus at school during taking her off from the bus and she fell on the concrete ground. Her forhead is scraped and got big bump. I felt like some one just hit me with the rock. We never got a call from principle and its got to be bad if principle is telling the news. I know my sweet khansa. She cry for hours on every little little things. She is very fragile girl. Zarrar and i just sat for while quietly trying to swallow our pain in. Then we decided that we are not going to feel better till we see our daughter. So we both drove to the school. They told us to take a seat till principle come and that scares us more why principle, i been coming here over 4 years and never principle need to be called to see my daughters. Well finally we get to see Khansa and she had a quite big bump on her forehead. Her one on one was keeping the ice on her. She was crying on and off and her red eyes told me she been crying her eyes out. After seeing khansa, give her tylanole for pain and chatting with principle, we both felt better. Coming home we stop and did some meat shopping. reach home and there were 3 messages waiting for me from Zahra's school that she been crying a lot and keeping her hand in her mouth. Kids came home. Khansa and Zahra were crying. After making every one calm and seattle. Call dentist to take Zahra for other look if there is other than teething bothering her. I took Ammar with me since i know Zarrar can not chase him around. But at Dr.'s office, Zahra crying out loud and Ammar climbing on every thing. I hold him tight in my arms but he try his best to get out. Every one was steering at me. FInally we call in the room. After some wait, Dr Jackson came in. He could not hear me well since Amamr and Zahra both were on top of their lungs. Dr. blow a balloon with his glove and that calm Ammar down. He is a great guy. He check Zahra and told me there is nothing wrong with her teeth other than she is teething. Its been three months she is uncomfortable with her teeth. I ask him to check again all the fillings he did during the dental surgery. He grind one of the filling feeling little pointy edge. He think she is teething many teeth at same time and they are coming out slow. Ammar fall a sleep in the van coming back. When i get home, i find Abeerah was not feeling good. She keeping her head toward the celling and her hands were curled up. That i did not saw before and i hold my heart. Turn the lights off so she don't look at the lights and give her sleeping medication which Dr. told me to do. Khansa, Abeerah and Zahra all were feeling cranky. Give them pain medication, feed dinner and put them to bed. Abeerah stayed up late jumping and being very loud and then she fall a sleep.
Friday, After everyone went to school and i did some cleaning, washing and rearrange the furniture. Kids get home and looks happy. rest of the day stay busy in cooking, feeding, playing with girls.
Saturday, Kids woke up early. Bilal went to see his cousin who been sick for couple of days. Zarrar is spending a lot more time with Bilal these days. Weather was nice. Bilal came back and want to play outside. Ammar saw him jumping on trampoline, and he got exited, he start making efforts to get out. I dress him warm and let him go to play with his brother. After little while i call them in for lunch. Bilal got ready for his library day . Husna pick him up. Feed girls lunch. Ammar did not seems right. he looks very slow. Bilal get back and happy to have lots of new books to read. Ammar did not look good so i put him to sleep. Zarrar and Bilal went to the musjid, Girls were doing good so i went to wash a load of laundry in the basement. When i came back up, find Bilal and Zarrar standing out side. They were so mad that i lock them out and they been ringing the bell and stand in the cold for 20 minutes. We can't hear the bell or any thing in the basement. I hope Zarrar did learn taking the keys with him when he leaves the house. He stayed mad with me for rest of the day.
When i was feeding girls dinner, i felt Abeerah was burning hot. Give her fever reducer. Put girls to bed. Ammar woke up and he was burning really hot too. Between Abeerah and Ammar, i spend all night taking care both of them. Ammar just wants me to hold him and he won't let me go to the bathroom for sec. With Abeerah, i was really scared that she might have seizure. Stayed up with them till morning.
SUNDAY, March 4th what a day. Hardly slept for few houres when i heard kids are getting up so i was up. Ammar and Abeerah was still very hot. Abeerah started to cry out loud. She was really hyper and i could not able to hold her down. Could not able to take her temprature. She was rolling all over the room. Could not able to change diaper and it took me forever in trying since she is on the move. BY afternoon, Khansa and Zahra started to feel warm and join Abeerah in crying and being uncomfortable. Ammar holding me tight, and 3 crying girls... i felt loosing my mind.
keeping up with Tylenol every 4 hours with 4 kids who use their hands more than open their mouth to drink medication. After fever went down, i want to give girls bath since they feeling really dirty and hair sticking together, i could not comb their hair. Put the heat up and give them warm bath. After bath i dry their hair and dress them before bringing them out the bath room avoiding the cold. Giving bath to khansa is not fun, how much she use to love taking a bath but now its the opposite. She can not sit comfortably in the tub. Abeerah was very hyper during her bath time. After the bathing, Khansa and Zahra sat down quietly but Abeerah keep screaming. She was very very active and took a lot of me to handle her. She keep bumping her head every where. Many head bumps to me and i also got a broken lip. I was unable to understand what is bothering her. She was putting hand in her mouth, Its like may be there is some new pain issue in her teeth. Pain killer did not do any thing then last i gave her codeine but that did not helped much. She stay cranky, hyper, jumpy and loud screams. I notice she do not want to lie down at all. Every time she dosing off and her head go down she gets up terribly. its like she have problem breathing when her head is down. Flush her nose with nasal spray and rub vicks vaporub all over her chest. My mom's remedy and always help opening the air ways to breath better. I bring her in my room, i have Ammar one side and Abeerah other side. Ammar was burning hot temprature 103 and Abeerah is very hyper. I hope my kids feel better tomorrow. Ameen.
Tayyaba
Sunday, February 25, 2007 3:02 PM CST
Feb 18th-24th
Sunday, Abeerah had two bad seizures in the morning to freak me out then she fall a sleep. Zahra cry most of the day with her teething pains and discomfort. Khansa started to drooling a lot. Other than that she sat on sofa quite and comfortable. Ammar kept me very busy. He start his day by flushing every one's tooth brushes in the toilet which clog the toilet and took a lot of Zarrar's struggle to open it up. Then he hide behind the sofa and empty the cushion spreading white foam all over. Took me some time to put it back sitting in a small space behind the sofa. He repeat that while i was giving Zahra bath, then i had to remove the cushion from the room and leave them in the dining table. Took Khansa for her bath upstairs and came back down in a huge white mess all over, find out Bilal find cushions in the dining room and in trying to be nice, carring boy he threw them back in the room where Ammar was watching TV. This time Bilal help me putting all back and i sew the cushion up for any more accidents.
My sister and brother in law came over, Zarrar was doing their tax returns. Bilal was happy to have his cousins over. They watch movie and play together. Every one eat. Bilal left with his cousins. After they all left, I feed my kids. My other sister in law with her family came over for little while. We had a good time. Abeerah slept all day. She slept so tight that me and Zarrar took turns to make sure if she is breathing ok. Then she got high fever while she was sleeping. I try every thing wake her up. She slept 12 hours straight. Then there start wheezing while she was sleeping. I see she had hard time breathing. Zarrar had gone to work,. I call but his phone was off. I did not know what to do, Take her ER but who watch my rest of the kids. Finally after washing her face and she open her eyes. I give her Mortrin to keep her fever down. Rub vicks on her chest and give her lot of liquid to drink. After 15 minutes she went back to sleep. And her fever went down and she started to breath ok. I stay with her all night.
Monday went great. Abeerah was happy and calm. Zahra and Khansa was happy and boys play around.
Tuesday, Kids play and jump around. I stay on the phone to find early appointments with neurologist for Abeerah. Neurologist i want to see for her is recommended by many people i know with disable children. Also she have experience with MPS patients. She is a very busy Dr. and can not find early appointment with her. Abeerah rolling her eyes up and going in circles. That scared me, she might have seizure again. Her pediatrician said to take her to ER if she do have one. Luckily she fall a sleep and wake up looking good. She been constapated and on medication but did not help. FInally she did went afdter 6 days.....HURRY. (Isn't great to get so happy when your kids poop)
Wednesday,Zarrar took Bilal and his cousin to NY to see museum but came back not finding any parking any where. Spend time with kids. They were all happy so i ask zarrar to watch them so i can return some clothing i had bought wrong sizes for kids long time ago but not have chance to change or return them. I try many times but never able to make it to store. FInally i made it there and i try to return but they told me the items are on sale now and i only can get back sale price. What make me more upset was that they start that sale this morning. Return and then buy some new items for Zahra and Bilal who are growing tall fast. Came home and whole living room, dining room and kitchen was a disaster. All the food was thrown on the kitchen floor and Ammar had no diaper on standing on the kitchen counter. Zarrar went to bed since he did not feel good, left Bilal incharge who got busy in watching his show...Oh well..Thats why i don't go out.....Clean and clean and clean. Change diapers and feed kids. Zarrar call in sick and stay in bed till morning.
Thursday, Zarrar took Bilal to Museum Of Natural History in NY keeping his promise with him. They went by bus and subway this time. I had to see neurologist for Abeerah and baby sitter was coming over to watch kids. So i need to make things ready for her to be easy to take care the kids. Dr. office is far and i am not good with long distance driving. I spend some time to understand the directions. But before i left, Zarrar came back home and he drove us there. So nice to have a man around. Bilal had a great time at the museum.
DR. Pattel check Abeerah and ask for MRI and EKG, ECG done on her. After long talk, we drive back home. I was hoping, she will give her some med but she said she can't give any thing till all the results are in her hand. Zahra and khansa did great. Watch lot of Barney and relax.
Friday, All stay home and I had a good time with kids. Zahra, Abeerah and Khansa was laughing. They looks so cute. It make me so happy when they are feeling better and so in their best behavior. Give hair cut to Abeerah and Zahra but Khansa stated to cry when i touch her hair so i let it go for some other day. She is very sensitive to her hair. She feels uncomfortable and always cry when i comb her hair that is why i want to make them short but it is very difficult when kid don't sit still for 10 sec. It was a quite exercise cutting Zahra's hair while she was constantly moving. Abeerah can't run away any more but she sure move her head a lot and fast.
Saturday, Every one stay in bed late. Vacation been great. I love to spend more time with my kids. My back did not hurt that bad since i don't have to rush making every one ready for school and carry them down stairs and to the buses in rush. I did not had to wake kids up from their deep sleep. But Zhara gets really cranky if she don't get out and its been over a week they all been staying home. After feeding every one breakfast, i make them ready so i can take them all to the mall. Bilal went to library with Amena(A friend). While he was gone, i want to cook dinner fast so i don't want to rush back home. Bilal came back and i end up chatting with Amena. After she left, I get back to cooking and Bilal start to read a book to me. I see Ammar is not in the room. Bilal went to check on him and told me he is playing in his room with toys. But few minutes later i heard some thing big fall upstairs. We all rush upstairs and Ammar fell from the dresser bringing the whole dresser down. He open all the drawer open to use like a stairs and climb up, trying to get stuff that i had put it really high to keep out of his reach. Hid head was bleeding. Zarrar and i clean him up. And put ice and med on it. It was stop to bleeding but later i see him bleeding again so i rush him to the Musjid where i show him to a Dr to make sure if he need to go to the ER but he said it is not deep cut and he will be alright just keep putting ice on it. He looks fine. He started to play with kids there and did not want to come home. He is a very active boy and always up to some thing. I need 4 extra hands and an other pair of legs to keep him in control while my other hand and feet are busy with 3 hyper girls.
News papper run a story on one of our little cute MPS friend Issabel. Great Article. Please check it out. Issabel Jurado
Our MPS friend Jasmine doing better now. She is back home. She still in need of prayers for full recovery. Visit Jasmine JOURNAL for updates.
Tayyaba Beg
Sunday, February 18, 2007 1:45 PM CST
FEB 10Th--17th. This week went busy like always. Saturday, Very calm and quite day. we all stay home and just relax. Kids watch Barney and I stay busy in cooking, cleaning, feeding and taking care girl's needs.
Sunday, Abeerah did not feel good. She looks sick and her nose was running bad. she fussed a lot and feel very uncomfortable. Khansa also whine and cry loud time to time. She had trouble sitting. Her tail bone is grown out which hurts when she sits. Poor baby. Khansa, Ammar and Zahra had a great day. Abeerah fall a sleep early. Give Zahra and khansa bath. Bilal and Ammar stay in tub and play for while. Bilal said he do not feel clean till his skin gets wrinkles.
Monday, Abeerah woke up fresh and happy so i send her to school. After every one left to school. I get dressed and we went for sofa hunt. Need sofa for girls room. They are having hard time sitting on the floor. Their feeding chairs are only good to sit for hour then they start feeling very uncomfortable. Also with their not too stable satnding, they fall and get hurt from chairs. So we look and look. All the stuff we were looking in one sofa was hard to find.
1-wide enough so girls can stretch and sleep easy on it. 2-soft and comfortable for their sitting difficulty 3-No hard or pointed edges so girls don't fall and get hurt. 4-Big enough so all girls have enough room. 5-low enough so girls don't get hurt 6-strong enough to take Bilal's Zahra and ammar's jumping. They love jumping.
7-most important, have to be affordable. I love one at Levits and we order it. Girls were calm after they came back from school.
Tuesday. All Kids went to school. Very cold day. All girls came back with runny nose. Zahra had fever by night. Ammar was very cranky.
Wednesday, It was bad weather and every one's school closed for the day. kids had a good day home. They just relax and stay warm. Watch snow falling outside from the window. Every one had a great valentines day.
Thursday. Zahra stayed home since she was sick. Bilal's had a musical show at school which was canceled on wednesday due to snow. I could not make it to his show since Zahra was satying home. Also our sofa delivery arrived. I was upset to see when they set it up in the room. It was bigger than the given measurements. And took a lot of room. Zahra hardly sits but she climb up and enjoy jumping on it. Their TV also giving a lot of trouble lately. Zahra go really hyper when she can't watch her Barney. Every time TV make noise or turn black, we have to beat TV up. Now Ammar learn that too and always running to slap the TV. Poor TV. Since last three years, its been running every day from morning till night. some times run for 24 hours. Since TV beena great Baby sitter to us so we desided to get girls new TV. Afternoon Zahra felt better so we went out to shop for TV. Zahra looks so surprise watching so many TVs at one place. We decided to get that mount on the wall since Zahra always touching and banging on TV of her reach. Always on front to block other sister's view. We look around and both like one but then i spot a bigger size for the same price but less name brand. Zarrar wants to go for better picture and this and that. But girls do not care how many pixel and HD its there. They just love to watch Some thing big and purple. With their weak eye sights, this will be good for them. We did not had time to think, kids were coming home from school so we pay and pick fast. We reach home right on time to get Ammar from bus. Abeerah and Khansa came home very tired looking. Both looks very weak. They sat on the sofa. Abeerah slept for while. Ammar had a ball. He was jumping around. Without TV, Zahra had a hard time. Bilal find his hiding place behind the sofa and starting to pile his toys there.
Friday-After all kids left to school. We work on putting the TV together for kids. Zarrar work on wiring the electric and then mounting the TV. quite a work. Will( great friend) came over on right time and give Zarrar hand lifting and putting the TV up. It looks great. We all loving it. We all hang out in the room.
Abeerah and Khansa sound junky in the chest. I give them medication. Abeerah keep rolling her eyes backward and keep steering to the lights. No matter where i turn her eye ball rolls where light is. Turn all the lights off. She started to cry out loud by night when i was making kids ready to bed so i kept her down stairs so other girls can sleep during the night. Middle of night Abeerah started to cry loud. I stay with her. i wants to hold her but she did not sit still. She keep bumping her head on my face. Very jumpy, I though may be she is not use to the sofa so i bring her upstairs. By morning started to appear, she fall a sleep. But did not slept for long. Dr. check my thumb and its not healed so stitches still left it on. Also starting medication to help burning in my feet.
Saturday. Kids having a winter break. Bilal woke up happy counting first day of vacation. He have so many plans for this vacation. Abeerah was very cranky and keep whining. Very hyper. Rest of them sat and watch "OPEN SEASON", I don't know how many times it run over and over. Its very funny movie. Ammar and Bilal loved it. Khansa sat all day and did not cry. She love watching her brothers jumping around. She even laugh out loud when i laugh. Poor Abeerah cry most of the day. she did not BM since she got home yesterday. I did not got any note from school either. Usually they send note if she goes in school so i know. I gave her medication for her stomach that so she can poop. When she get louder, she keep her hand in her mouth, It seams like she having a trouble with some tooth pain. I can not do any thing till monday. I gave her pain medication. Put every one to bed. I clean up and then i stay with Abeerah. She looks sleepy so i took her upstairs to her bed. She fall a sleep by 3am. I hardly close my eyes when i heard loud crying of Abeerah. It was 3:30am. Brush her teeth and let her play with water in the sink. She stay quite for while. Bring her down stairs. She started to cry again. with her noise Ammar woke up and came down. He cry for attention. Now i had two kids crying left and right. I do not want to leave Abeerah but ammar keep pushing me from my back try to tell go up stairs. I bring him up and try to put him back to bed but he just wants me to hold him. Finally he fall back to sleep. I went back to check on Abeerah, She was sleeping on the carpet. did not want to wake her so put blanket on her and went to bed. About hour and half later (sunday early morning)Zarrar came from work and wake me up. He made coffee for me. When i was sipping, i heard a gurgling sound, ran to check on Abeerah and she was having a Seizure. poor baby. Hold her down, clean her and lay her on bed. It is hard to watch your child go through that but at least i knew what it was and i did not freak out like last time She fall back to sleep really deep. I ask Zarrar if he can watch her so i can get some sleep till other kids are sleeping. Bilal wake me up telling me, some thing happening to Abeerah. I came down and Zarrar told me she had another seizure. After she fall a sleep again. I am praying she wake up feeling good and no more seizures. Ameen
Tayyaba Beg
Saturday, February 10, 2007 11:58 PM CST
FEB 4Th--9th. First.....My congratulations to all the COLTS fans. Sunday, Zarrar invited his football team to watch a game with him. We both love having friend over. I find some new snacks recipes to make for the boys. That day, Khansa cry the whole morning. Gave her pain med but did not helped. Keep her in the tub with warm water to calm her muscles. Almost try every thing but she seems very uncomfortable. I felt she did not want to sit any where. Even sitting in the tub, she had really hard time. Finally give her codeine which made her feel little better. Then i did shopping and cook. But in hurry, opening a jar of salsa i use the big knife instead of butter knife...it slip and i cut my finger...OUCH...which effect my menu for the day. Zarrar took over the cooking what i was doing. It was great game. Some were happy and some left sad on Bear's lost. I could not stop the bleeding since i need to use my hand a lot. so next morning i got 5 stitches. My husband and Bilal hide all the big knives from me .....Zarrar was telling the doctor that ..... he is thankful that i did not use the gun to open the jar.
This week little hard on me since i am feeling burning sensations in my feet all the time. Which is very uncomfortable for me. Also having some migraine head aches. Then my thumb slow things down for me. Holding or garbing become challenge. I never thought my thumb is so important in diaper changing. Putting clothes on kids or tying the shoes for kids. But i am happy some way this happen to me. This made me appreciate so much and thank GOD for every thing he gave it to me. some times we forgets that even little little things HE gave it to us is so important parts for our lives. I can feel the tiny bit pain for those have lost or don't have arms and legs.
Due to extreme i kept the girls home for 3 days. Ammar came back home sick on Monday and also end up staying home for tuesday and wednesday with girls. Girls doing good and sleeping good. I am happy for that. We keeping the house warm for them. Also recently done insulation in the girl's room made a big difference in keeping the room warm. I hope there is no more cold for them rest of the winter.
Khansa having hard time in sitting. Bus driver been telling me, she cry all the way home. I order a soft cushion with hole in the back for her. We are also looking for a sofa for the girls room with soft cushion. So they can sit comfortably. I know we can not pull the disease out of them but sure try to make them feel comfortable as much we can.
Ammar is doing so much around the house that make me spend most of my day in cleaning. He is terribly cute little boy. He try to repeat some of the words which is not clear yet but make you smile to hear them. I have to spend some money on tooth brushes almost every other week because Ammar love to soak every one's tooth brush in the toilet as soon as he put hands on them. I still can not find the higher place where he can't reach.
Bilal is doing good. His report card came very good from school. I want to say my special thanks to Husna for taking Bilal to the library every Saturday. He is able to get new books every week and so happy to read them. He loves going to the library and wait for saturday to come whole week long. Now he is spending more time in reading than watching tv. His behavior is change a lot. Not complaining for not going out much. Also helping me around the house to earn his quarters.
I also went for blood test for burning feeling in my feet. Blood result came back and i am not diabetic which was Dr.'s first guess. Now Dr wants me to go for MRI of my back. He think my back have some nerve damage and that causing my feet burning. I need to be healthy. My heart ache so much when i am unable to give my girls all the attention they need. They are totally dependent on me.
I met and hire one lady last week and she came on Monday for baby sitting. I am so much thank full to Allah sending her to me. With her watching the kids, i was able to go to the Dr. to get stitches. She is GOD send. She took care of my girls good. I hope she stays with me even she is looking for full time job. Thats how all the other ones left before her since i can not hire or pay them for a full time job.
Tayyaba Beg
Friday, February 2, 2007 3:43 AM CST
Urgent Prayers needed for our little 8 years old sanfilippo friend Jasmin. She is in ICU and struggling for life. she is on life support right now. JASMIN and her parents need your prayers. Please visit her JOURNAL and leave a message of love and support in her guestbook if you can. Thank you
Its been very emotionally, heart aching feelings since our little MPS friend Jasmine is in the hospital struggling. She and her parents been going through a lot. I can not take her off of my mind and praying hard for her recovery. I am feeling so sad and i can not begin to imagine what her parents are going through watching their only child. All MPS parents are sad and praying for her recovery.
Girls were home for Thursday and Friday due to extremely cold weather. I do not want them to get cold again so soon. Keeping them home when they are healthy is great. They are doing well. I get to spend a lot of time with my girls. I am so thank full to ALLAh for giving me so precious girls. For them i get to learn what loving your child really means. No matter how they are, they are very special to me. I hold them tight. My heart just keep tearing up looking at them. I play with them and laugh with them. Abeerah and khansa use to see me laughing and they always started to laugh and giggle but now both of them just stare at me. Its like they forgot to even smile any more. Their eyes just follow me around when i play with Zahra. She still laugh and smile with me. She loves hugs. i wish i can pause the time just right here and never have to face their future. It just break me up to think about it. Can't sleep at all and if i hardly fall a sleep, wake up with night mares. I started to think a lot. I am not doing much cleaning other than basic needs these days which left my house really a mess but i want to spend all my time with my daughters. May GOD help me here.
All week, i spend so much time on the phone to find some way cover medical bills and i call and call, leaving, messages. But i am so far still there where i started it. I don't know how i can not able to get medical help when every one i know have help through their states.
Girls are doing well. They all sleeping good through out the night for four days . Monday every one went to school feeling great. But Abeerah came back home with runny nose. ZAHRA cry again with teething pains. She being so much better with her crying for while. Her two molars are already starting to come out and i can feel on my finger when i try to check it after getting couple of very bad bites from her. Now just two more to go. Hurray.
Abeerah is getting heavy or feel heavy since i am getting old. It is not easy to take her to the bus in the morning carrying through stairs specially in winter when there is ice out side. We already lost two aids who started to helping me with her. Bus driver also said if we can use wheel chair for her. For that we need to put up a ramp in the house because it is no point caring her down from our front 6 stairs and then use the wheel chair so she travel in her wheel chair. My back is not strong to carry her with wheel chair from those stairs. So for now we have to focus on building a ramp.
Ammar is doing well. Finally he started to get speech therapy this week after 3 months of waiting. i hope this will help him with his language. I gave him haircut after many times of trying and failing because he do not sit still. Now i can see his eyes again.
Bilal is doing good. Since he started to understand the money value and i need help in little things in the house, i start new thing for Bilal for helping me out. When ever he help me with stuff, he will get a quarter. He is happy collecting quarters. Now he wait for me to ask him do some thing rather than get angry that he is only one from his siblings have to work around the house. This is big help for me. On weekend he made $2.50. he is happy and saving to buy a new video game.
i need prayers for my health. I am suffering with this Burning feeling in my feet all day and that gets worse when my feet are off the ground and at night. I am so uncomfortable because of that. I talk to the Dr. about it and he said i have Neuropathy. which is cause by damage to the nerves. I need to get my blood work done and get some help because every thing stated to feel a lot and Dr. said it get worse if not taken care off.
Tayyaba Beg
Wednesday, January 24, 2007 0:34 AM CST
Hi Every one. I want to thanks you all for checking on our daughters and singing the guest book. Your thoughts and prayers are really appreciated. By end of the day when i read your kind words, they help me go through my hard times. Your encouraging words keep my faith strong. Thank you all.
Its been a little while since i update here. I was busy with kid's colds one after other. Zarrar also miss some days of work due to cold and cough. Weekend went really busy taking care of all little peoples and big person feeling sick. I am happy and thankfull that every one is feeling better now. Kids went back to school on Monday.
Zahra is having trouble sleeping these days. she stay up and jump on her bed till late night. she been taking pain medication for her teething pains. I had to stop her sleeping med due to she start a bad diarrhea.
Khansa is very cranky and whines a lot these days. Her feet are in pain. I have to change her side 2 to 3 times at night because she is unable to do her self. she is sleeping good at night and i have to wake her up for school and she gets really upset when i do so. She stay sleepy while i wash and change her in the mornings which i am not happy about. I do not like to wake her up at all. Weekends i let her sleep late till she gets up her own.
Abeerah is having trouble sleeping at night other than that she been doing good. she standing for more longer period and walk with holding my hands since she started to wear braces on her feet. Girls had a winter concert in school but i missed it. Teacher wrote Abeerah and khansa did a great performance.
Ammar shows some improvements. He always singing some thing in his language front of mirror. So i try to listen closely and he sings Barney song "you are special...special...special" so cute. He is too much to keep an eye on and always end up in some mess somewhere. I have to stay on my feet when he gets home from school.
Bilal having a better week. He bring good notes from school for his good behavior. We had a first snow here and Bilal try every effort to make a snow man from just a 2 inch of snow on the ground.
This past week been have some financial test to face. Zarrar and i was just going some blocks to pick up his car from the gas station which he left earlier morning to fix. We were stopped by a police block from the gas station and it was my first time police behind me so i got really panic first. we end up getting some tickets and our car also towed away for having the expired registration. Which both of us was not aware of it. We stand in 15 degree freezing cold watch our car towed away. Fortunatly, Zarrar car was closer by at the gas station. Next morning Zarrar took care of every thing and get our car back but it sure cost us a lot.
We are overwhelmed by medical bills and bills that forward to collection agencies. It stressing me out to deal with them and all the collection calls. Pile of bills just getting higher and higher each day.
Wednesday, January 24, 2007 0:34 AM CST
I want to thanks to all for checking on our daughters and singing the guest book. Your thoughts and prayers are really appreciated. By end of the day when i read your kind words, they help me go through my hard times. Your encouraging words keep my faith strong. Thank you all.
Its been a little while since i update here. I was busy with kid's colds one after other. Zarrar also miss some days of work due to cold and cough. weekend went really busy taking care of every one not feeling good.
Zahra is having trouble sleeping these days. she been on medication for teething pain.
Khansa is very cranky and whines a lot these days. Her feet are in pain. I have to change her side 2 to 3 times at night because she is unable to do her on. she is sleeping good at night and i have to wake her up for school and she gets really upset when i do so. She stay sleepy while i wash and change her in the mornings which i am not happy about. I do not like to wake her up at all. Weekends i let her sleep late till she gets up her own.
Abeerah is having trouble sleeping at night other than that she been doing good. she standing for more longer period and walk with holding my hands since she started to wear braces on her feet. Girls had a winter concert in school but i missed it. Teacher wrote Abeerah and khansa did a great performance.
Ammar shows some improvements. He always singing some thing in his language front of mirror. So i try to listen closely and he sings Barney song "you are special...special...special" so cute. He is too much to keep an eye on and always end up in some mess somewhere. I have to stay on my feet when he gets home from school.
Bilal having a better week. He bring good notes from school for his good behavior. We had a first snow here and Bilal try every effort to make a snow man from just a 2 inch of snow on the ground.
This past week been some financial stress to face. Zarrar and i was just going some blocks to pick up his car from the body shop that police stopped us in middle and it was my first time so i got really panic first. we end up getting some tickets and our car also towed away for having the expired registration. Which both of us was not aware of it. Next morning Zarrar took care of every thing and get our car back but it cost us a fortune. We are overwhelmed by medical bills and bills that forward to collection agencies. It stressing me out to deal with them and all the collection calls. Pile of bills just getting higher and higher each day.
Please keep my family in your prayers. There is no better support than a prayer.
Tayyaba Beg
please keep checking back often for more updates on beg girls and please sign the guest book to let us know you stop by. It means a lot to us.
Tuesday, January 9, 2007 1:20 AM CST
New year start and i was looking at my kids and thinking, how much had change over a year. Thinking about what we went through in year 2006. Start with Ammar diagnosed with Autism, Abeerah's crying for months till we find the real problem then finding the right surgeon and major dental surgery. Passing of my best friend, my mother in law. Then Zahra's dental surgery and month later her hernia surgery. Ammar placing in to school and watching him regress. Zahra's aggressive behaviors. Dealing with Abeerah's seizures. Many many many Drs. visits and watching girls loss many abilities this year but in other hand so many beautiful moments to remember, so many family gathering. Also made many new friends. I am thankful to GOD for all the health and happiness we had in 2006 and praying for having lot more this year.
JAN 2nd-7th This week was little better than last couple of weeks. Kids went back to school on Tuesday and i get back to the routine of crazy mornings of making 5 kids ready at same time bus pick ups for school which make me really run up and down and i get really tired but good side i have some time to rest during the day before kids starting to get back home.
Zahra been crying out loud. she cry as soon as she comes home from school. Her molars are coming. Pain medication help her for little while and before the next dosage she start crying on top of her lungs again. Orjel or cold stuff for chew don't help much either. I do not know how long it will take before her molars comes out and her this teething pain go away.
Abeerah having a sleeping issues these days. She goes 2 days straight having any sleep and then she sleep for whole day and night. This is kind of new sleeping pattern for her. So far no medication is helpful for her and it never had in past. We go through so many prescription med already. Any thing i give it to her for sleep, it works opposite on her. she gets very hyper, jumping around, banging in to walls and laugh all night long when the same one works well on Khansa and Zahra fine.
I have good news that Khansa gained 1 and 1/2 pound. Finally!!!! She been loosing her weight for while. Now she is on genestein and other supplements.
Ammar showed some improvement over the vacation and his teacher call and told me that Ammar said many words at school. I am working with Ammar at home with picture cards. He is trying to repeat some words but still have no language skills yet. Mostly he stay with himself and ignore all surroundings. Once and while he give a great eye contact but mostly i have to force him to look me in to my eyes.
Bilal is doing ok but he do not help me as much he use to do before. Now he show more frustration and ask why i am asking him for help. He is started to get lot more homework and so lazy to do it till i sit with him. Gets very angry if i have to get up for some reason. Ask more question about her brother and sisters. I guess he is growing in to a big boy now.
Zarrar is doing ok. On Saturday, Zarrar had his family over to watch game and sunday his friends came over. But unfortunately JETS and GAINTS both of his teams lost. Him and his friends were very sad.
House work is just never finish here. Laundry piles never seems to get smaller even i am washing loads and loads of clothed every day. Ironing is hardly get their turn. I am hardly making up with every thing these days. Girls sleeping issues keeps me up at night and Ammar's going in to every thing and leaving mess for me to clean many times a day increase my work. Or may be i am getting old and don't have the same energy like i use to have. But i am trying to make my self more organised so i don't feel running around without my head. i need your prayers.
MONDAY. (JAN 8th) Middle of the last night Zahra started to cry on top of her lungs. And she wake Abeerah, and Ammar up. Zahra get better after having her pain medication started to work but after no one went back to sleep and they just walk, jump and play around till 5am. So for getting up for school was not possible. Woke Khansa up for school but she do not look good and start crying. After sending only Bilal to school, i took care of Khansa but some reason she was not happy. She do not want to sit at all on her feet nor on her butt. I try to hold her down but she bites any thing she can put her mouth on. Also use her tiny fingers and keep hitting me. Biting and hitting any thing in her rang is a normal side of her but crying i was really worry about. Abeerah, Ammar and Zahra stay in bed till afternoon. Then they started to wake up one by one. Bilal came from school and i made him sit to do his homework right away because at night he always start falling a sleep middle of writing. So this is the new rule of this year. Help him with his home work and then his SAPARA while i cook dinner. After eating dinner i cut every ones nails. Lot of struggle there for me holding down 4 hyper active, not sitting still kids. Khansa is not look good and keep crying and she did not behave like that in a long long time, Lately i hardly hear her voice for days. I put her in the tub with warm water to make her muscles relax but she have hard time sitting in the tub and she keep crying. I cut half of her hair because it grew too long and she do not like when i comb them. After i put her to bed. Give Zahra then Ammar bath. Then give Abeerah bath and little hair cut. Then Bilal got new hair cut and bath, i send him to bed. I usually do nail or hair cut and kids bath on sundays but this sunday was busy with guest for the game.
After putting every one to bed, i did some loads of laundry and foldings. Abeerah seems not sleeping tonight, i have to take her back to downstairs in the play room so other girls can sleep. Khansa also not sleeping and keep sitting on her bed. And every now and then cry. I am so feeling sad to see her upset. I wish she can tell me what is bothering her so i can help her.
Take care Tayyaba
Sunday, December 31, 2006 1:22 AM CST
Quick update JAN 1st, 2007
Happy new year to all. My best wishes for health, happiness and joy are with you this year.
SUNDAY. (Dec, 31st) We celebrate Eid-ul-Adha on sunday. Start my day very early to keep all the kids raedy on time. Morning we went for prayer. It was really nice to meet so many people i did not see for long time. girls did very well the whole time we were out. Later, One of my uncle came over, I did not see him since i am a little girl. So it was nice to spend time with him and his family. Did lot of cooking and eat. Also eat lots of sweets. It was fun day. Try to stay up for new year start but could not make it and fall a sleep couple of minutes before. Happy new yaer to all.
-------------------------------------------------------------------------------------- DEC 23-31st
Kids winter vacation time made me really busy these days. I do not know when my day passes being busy in feedings to diaper changings and cleaning. On top holidays and guest made every thing overwhelming for me. So can't write much, Just want to give very quick update today.
Abeerah been very very hyper active last two days. She did not sleep two days. Feeding and taking care of her is harder when she do not sit still for second.
Zahra been going in to crying out loud for hour or two many times a day. Some times put her whole hand in her mouth and other time keep chewing her fingers. She seems like teething. Her dentist is on vacation. This time of the years its very hard to get hold on Drs. Her last check up, Dr. did not see any problem with her teeth. I am keep giving her pain medications and she feel better for a while after the medication started to work.
Khansa being very quite these day. She moves very slowly and when she sit for while one place then she can not move her self. Bathing and dressing is quite challenging. Ammar is getting his hands in to every thing around the house. Nothing i mean nothing is safe from him. And he always get away after making big mess with his cute smile. Bilal is doing good. He is happy to visit his cousin and spend all day with him twice this week.
Many many people made Hujj this year. I wish i could be one of them but hoping for next time. My request to all of you, Please ask for prayers for my family when you meet any Hajji when they return home safe. Insha-Allah. May Allah accept every ones Hujj. Ameen.
Wishing you all the happiness and joy on the occasion of EID. May the Three days of EID-UL-ADHA be filled with pleasant surprises and blessing of ALLAH be with you. Ameen.
Sometimes the best days are those shared with family.
Tayyaba Beg
Wednesday, December 27, 2006 0:06 AM CST
DEC 20th-25th. Busy week as always. kids did good this week. Abeerah did very well. She looks so calm and peaceful. Zahra had many crying out loud moments but after having her pain medication she is ok. Ammar did over time doing his things. From suger spreading to shampoo, lotions, salt, toilet paper and juice Accidents all over. He keep me very busy. Khansa did well other than had some cramps up her feet. Bilal had a pajama party at school and he is very happy having a break from school.
Saturday, Sunday and Monday went very busy. First my cousin came over for couple of days Then all Zarrar's brother, sisters and kids gathered and came over. We had a great time 2 days of cooking great dinners and every one enjoy the time together and eating together. I am really thankful to HIM for all the blessing we had this winter time.
I hope every one having a great time with their families at this holidays time.
God blesses those who have Faith and Trust in Him. He gives Peace and Joy to those who have Hope in Him.
Zahra's 6th Birthday pictures.
Wednesday, December 20, 2006 12:00 PM CST
Zahra's 6 birthday DEC 20th
DEC 11th-17th Last week went very very busy and tiring for me. Every one in my house was sick. First Abeerah and Khansa did not feel good and stay home from school on Monday then Bilal started on tuesday when he came home feeling hot. By next day Ammar, Zahra and myself was on bed. Fever, coughing, runny nose to vomiting. Zarrar also got some of it.
No sick time for mom when every one else is sick in the house. Girls get better on and off but Bilal took whole 6 days to get better. I had to keep up with lot of medications schedule for every one and lot of soup. Weekend went busy as well with kids. Did not do much and just stay home and keep every one warm. Sunday every one feel better and rested.
MONDAY. (DEC 18th) Wake up and start waking kids up for school. First dress Abeerah. Then Bilal and then Khansa. Khansa felt warm but i thought she just woke up that is why she feeling warm. When i was putting jacket on her, she did feel hot So i kept her home again. After Abeerah and Bilal left to school. Make Zahra and then Ammar ready for school. After they left to school, make breakfast and feed Khansa. make her lay down on the sofa and watch Tv with her. Zarrar and Khansa fall a sleep and i made some phone calls that needed to be done for while. After kids get home i got busy with them. Zahra came home crying. She jump and cry out so loud that every one get upset. I took her upstairs and check every thing to see what is bothering her. She was keep slipping from my arms and keep falling down and keep crying. I gave her pain medication. Try to calm her every way i could. After two hours of struggle, she felt better and get back to her Barney video. Bilal had a lot of home work from the days he missed at school so it took a while to help him get done all. I cook dinner. Khansa was feeling hot and very weak. Feeding her took longer than usual. After feeding dinner to every one, make every one get to bed. I did some cleaning and made things ready for next day and went to bed.
TUESDAY (DEC 19th) Khansa's fever went down by night and she was up early feeling better. But i have to keep her home because school policy is to keep child home 24 hours without fever and Tylenol. After 4 kids left for school, i took care Khansa. We eat together and watch Tv together while Zarrar clean the yard by blowing the leaves stuff for the last time leave pick up from curbs. I did some laundry. Laundry been a big job for me since kids go through so much changing throughout the day and when it multiply by 5 and two Adult....... it is whole lot of laundry here.
Get kids from buses one by one and take care every one. Zahra was very hyper and loud but thank GOD she did not cry like yesterday. She is putting her hand a lot in her mouth so she could be teething new teeth. After girls settle and Ammar fall a sleep. Me and Bilal took the trip to meat store and buy some meat. Its been while we eat chicken. Came back and i cook dinner. Ammar and Zarrar woke up. Every one eat dinner and enjoy it. Zarrar left to work. Bilal did his homework by himself since it was easy one. I start taking kids upstairs and put them to bed.
Tayyaba Beg
Monday, December 11, 2006 1:54 AM CST
DEC 4-10 Whole week went very good with girls. Abeerah, Khansa and Zahra had a great week in a while. They were happy and relaxed.
Khansa been having her feet cramping up problem but now sice she is start wearing her feet braces full time and it start helping her a lot. She is not crying every hour with pain in her feet. She is able to stand up and walk for longer time. She looks so much better now.
Abeerah did not had any seizor or other type of behavior. I am very happy to see her like that. She is also wearing feet braces all day and it did helped her stand up again and she can steps forward than backward. Zahra was on her usual of very hyper active, jumping around stuff. She did not had any crying more than 10-15 minutes which is very good. I am so thankful for this better week.
Bilal had a little frustrated week. First he bring a note from school for pushing an other student. And he had to write the whole a lot to explain and not to do it again stuff in school. Then he have some upsetting mornings that i do not help him get ready for school when i am helping his other 4 siblings. Some times 7 years old act such a baby too. So now i am washing and brushing teeth and changing clothes for all my 5 kids.
Ammar did not do well lately He been very cranky and giving me lot of head bangs. We are noticing lot of regression than improvements in him that breaks my heart so much. He is not sleeping well at night and stay up doing some thing. He is not giving eye contact. I been working with him with cards and he was doing so well with labeling pictures but now he gets really upset and start banging his head on the floor as soon as i bring the cards out so i do not know what to do to help him. My ears just waiting to hear from him call me Mom. I felt some point things getting better with him and every thing will be fine with him but now it seams every thing going backward. Need prayers for him.
Zarrar took a trip to the grave yard with Bilal where his mother buried to check a place out to buy 3 graves for our girls. Its on a beautiful hill covered with flowers and trees. Really nice and quite place. The place is running out of graves fast. We want our daughters to be closer to their grand mother. I did not go with him because i have no baby sitter these days and kids can not travel with me since we have no heat working in the van. Even its the reality and i do want that place to be marked for girls but i know it will hurt me a lot. People save up for their kid's education and weddings and here we are, thinking for their graves and funerals.
Khansa lost 1 more pound. I start her on genestein and other supplements again since she did well for while when she was on it. So i hope this help her do well overall of her health.
yesterday when i carried Abeerah downstairs and trying to jump over the safety door carrying her because the safety door is screwed in since Zahra keep opening and escaping from it and ending up on the street in no time. I fell with Abeerah in my arms and in saving Abeerah not to get hurt i landed on my elbow hard. I know OUCH....I wish there was some one making a video of it. It could be a great clip for the funny videos. But thank God Abeerah did not got hurt.
Sunday, December 3, 2006 4:02 AM CST
THURSDAY (Nov 29th) Went to bed early(10-pm) last night when i was Just trying to put Ammar to sleep since he been really cranky and having lot of Tantrum issues and does not let me do any thing.
Since i slept early last night, I woke up by 2:00am. First I check on girls. They all were sleeping. I was happy Abeerah was sleeping tonight. Every thing was big mess downstairs since i did not clean up last night. Did dishes, clean the Kitchen, kids room and living room. Then check on girls again. I have to give Khansa turn couple of times at night because her joint locks up for staying in same position for while. I find a best time to take shower since i did not get much time during the day for some days. After dressing and my prayer. i wake Bilal up to get ready for school. Went to wake Abeerah up but my heart just felt some one stab me. No parent should ever see this picture. EVER. Abeerah was face down and her tongue was hanging out and her eyes were swollen so big. Her face was very dirty. I try to pick her up but she was like water. Keep falling from my hand. She was breathing but there was no life in her. I wash her face and try to open her eyes but she was in deep sleep and exhausted. Zarrar saw her and got upset. He lay her on the sofa and sat by her. My heart hurts so much looking her like this. I been keeping her in my room at night since she start her first seizors. Since she did not had one for long time, i start putting her back in her room. I was so upsetting for me that i was not there for her. My poor girl. Now i have to rush to see a neurologist to take care of this horrible seizor thing.
Make Khansa ready and send her to school. Zarrar took Bilal to drop him at bus stop. Put zahra in the bus and there was one boy coughing on the bus. Bus left and Zarrar said to me, Zahra will be coming home with cough. I wake Ammar up, he looks good so i send him to school after having a whole week off from school being sick. After we done sending kids. Zarrar get ready and left to his meeting in NY. I stay with Abeerah. She keep choking up with mucus in her mouth so i stay closer to her. I try to feed her but she did not even open her mouth. Just stay sleeping. Zarrar came back in afternoon and show me some awards he got for doing a good job. Way to go Zarrar. Ammar came from school, Then Zarrar pick Bilal up from the bus stop. Zahra came home and guess what, She was coughing. Khansa came home and bus driver told me she cry all the way home. I saw her foot and it looks twisted. Her one foot keep cramping up a lot which is very uncomfortable for her and really heart wrenching for me. She wears plastic braces to keep her feet straight at school. After making every one comfortable, I try to wake Abeerah up again. Sat her in her chair but she keep falling down. She was very tired. i try to feed her but she did not chew at all and fall a deep sleep again. I cook dinner and Ammar fall a sleep next to my feet while i was cooking. Wake Zarrar up. He got ready, ate diner and left to work. Feed Khansa and Zahra. Then Ammar. Help Bilal with his home work, Give kids medications And put them to bed. Abeerah woke up but her eyes were really swollen and really red. I took care of her needs. After eating and drinking, she fall back to sleep again. I bring her in my bedroom and kept her in my room. Before i could fall a sleep, Ammar woke up and kept me on my feet all night long. He go in to every thing and does not scared of dark. Every drawer in my house was touched my him and things just end up on the floor. He is too much but too cute to get away from every thing.
FRIDAY (Nov 30th) Because of Ammar kept me awake last night, I was so tired and felt warm by morning. Abeerah and Zahra was not well. Ammar went to bed in the morning so only person was going today was Bilal. I wake him up to get ready. Check on Khansa and Zahra. Change Khansa's side. while Bilal was freshing up, i just lay down a sec and next thing i fall a sleep. Bilal woke me after he got ready and his bus had left 5 minutes ago. I did not know why Zarrar did not rush him to get to his bus stop on time. When i came down to check, i find him on the sofa sleeping. I know he have a long night. Drop Bilal off at school. Came back and find Zahra wandering around the kitchen and lot of food and sugar on the kitchen floor. Take care of her and put a Barney tape for her. Then take care of Khansa. Ammar and Abeerah slept till noon. Abeerah woke up happy and look much better. But her eyes were still red and keep tearing up. Zarrar went for jumma. and i cook food. I did not go for shopping for a while and i am having trouble with cooking when i don't have all the ingredients. It was time to get Bilal so i ran out to get him. I just went few steps, Zarrar call me and tell me that he will pick him up. Bilal came home happy that it is Dec 1st today and now it will be snow soon.
After feeding girls and Ammar. Give food to Zarrar and Bilal. Did some laundry. We were invited today for a Christmas party today. They really insist for us to come. I want to take girls out. Usually we are not get to invited many places and i don't know they are not going to see much in this world so i want to take them to any Eid, birthday, wedding or any holiday party till they have chance to see. I have two hours to make 5 kids and myself. So i start from Abeerah. took her upstairs and give her bath, dress her and carry her back downstairs. Then Khansa and then Zahra took their bath. Make Ammar ready. Bilal got ready too. I dress my self. Making girls hair, putting shoes, jackets and putting them in the van took a while even i was rushing for every thing but by the time i start the van I was half hour late already. Drove to Fairleigh Dickinson University. I call on cell to let them know i am outside. Program coordinator Cory and her helpers received us on the door. They took kids inside and i park the van. There were so many people. Lot of food but we could only eat was French fries and cookies. Kids had a great time. BIlal had a ball playing with kids. Santa came and give every one gifts. Zahra started to cry and cry. Santa helpers sing and play with Zahra and Ammar. Some play with Bilal. It was really nice of them to give my kids a special treat. And in the end, help me taking the kids to the van.
I drove home but girls fall a sleep and it was lot to carry every one so i just keep driving around. But finally came home, bring every one in one by one. Feed them oatmeal cereal and make them ready to bed. After putting girls to bed, Bilal open the presents he receive and he was so happy what he got.. I help him building frog with small pieces Then i send him to bed. It was a big mess to clean but Ammar was very cranky so first i want to put him to bed but i fall a sleep with him.
SATURDAY (Dec 1st) Woke up with sound of TV. AFter freshing, i check on kids. Every one was sleeping. Came downstairs, Zarrar was watching TV. It make me really upset when my house is a mess. So i start cleaning up. Ammar start making too much mess. He throw every thing he finds on the floor. By 10am, every thing looks clean. Then i turn to kids. Every one was up and my busy busy day start. Bilal woke up and he was right back to building. Bring other 4 kids downstairs after diaper changing, brushing teeth, washing face, combing hair and dressing. Give them milk to drink.
We had a visit of Friends from Grace Redeemer Church. They been a great support to us. It was really nice of them to stop by. Zarrar stay them while i feed kids breakfast. Bilal got a good friend who build the Ferris Wheel with him.
After they left, Zarrar look at my virtual PC because it keep getting jammed. Rest of the day we did not do much and just relaxed. Abeerah had a very good day. She was happy. Khansa cry three times for about 20-25 minutes when her feet cramps up. I gave her pain medication. Zarrar took some sleep, woke up and left to work. i play with kids, watch TV, feeding and etc. I let kids stay up late. Then put every on to bed. Clean up kitchen and stuff then went to bed struggling to put Ammar to go to sleep than walk around in dark.
I was happy and thankful to ALLAH to have a better day today because its been a very emotional week for me. Watching my daughter's progression toward their destination, Ammar's regressing, My brother's return to back home and then his and younger brother accident and bad injuries and my own health. Day just passed being busy but i know how i go on with nights. Some time it feels like i am unable to do this but i am thankful to have faith in HIM. This is the only thing keeps me going day by day. My belief is strong and i know this life is only a test and preparation for an eternal life.
I keep thinking of this Ayyat........
Do you think that you shall enter the Garden of Bliss without such trials as came to those who passed before you? (Qran)
Very sad news to tell, one of very young Sanfilippo Syndrome girl OLIVIA who have stem cell transplat, lost her battle with this disease. Please keep her family in your paryers.
Monday, November 27, 2006 11:50 AM CST
SUNDAY (Nov. 19th) Zarrar came home from work early morning and wake me up but I slept very late last night due to Abeerah was not feeling good and she stayed up all night long so i did not want to be up early. So he wake Bilal up and took him to get turkeys. He do ZABIHA(Halal) him self so many other friends want him to get for them too. I stay in bed till i heard Zahra woke up and start banging on the windows. So i start my day with her. Friend of mine call and told me she is in the area and want to stop by to see me. i always love to have a company. Put Zahra and khansa in the tub. Give them long warm bath. They love playing with water. Took Khansa out to dress her and Ammar jump in the tub with his clothes on. Sarah came over, i was running up and down dressing my kids. After we talk little. Abeerah was sleeping tight and i let her have rest. After friend left, I feed kids breakfast. Zarrar came home and bilal was so exited that he saw so many turkeys alive. Make breakfast for them too. Abeerah woke up and i took care of her, bring her down stairs. We have a class at our house for all the family kids. It went very nice. Every one show some presentation or talk about some thing they learn in school. Then we all had cake for Abeerah's birthday. I cook dinner and feed my kids. Zarrar left to work. Bilal wants to give Abeerah a present and eat cake with every one so i gather every one on the table and cut the left over cake. It was fun. Girls just want put hands in to the cake and in a short time cake frosting was every where. it was fun and they were very happy.
After make Kids ready for bed. Took every one upstairs and put them to bed. Did laundry, and clean up entire downstairs area specially all the cake frosting form the table and chairs. Made things ready for school tomorrow. I was tired and went to bed.
MONDAY (Nov. 20th) After getting fresh, start waking kids up and start making kids ready for school. Make lunch ready. After all 5 kids left to school, i relax a little and have breakfast with zarrar. Abeerah's teacher wants to have a party for her at school. So i got ready and went to supper market and buy stuff for the party. Reach to school. Every one gather around the table. Khansa also join us with her aid. Every one had a great time.
Drove home fast to get Ammar from bus. Then pick Bilal up from his stop. Abeerah, Khans and Zahra also arrive from school. Get them from their buses and make them comfortable.(take shoes and jackets off, change diapers, sit them on their chairs, give their sippy cups of juice to drink and put the Barney on). Zarrar and Bilal went to the musjid and i cook dinner. Did some laundry. Zarrar and Bilal came back, eat dinner and Zarrar get ready and left to work. Feed Abeerah, Khansa, zahra and ammar one by one. Help Bilal with his home work. Make kids ready to bed. Take them upstairs one by one and put them to bed. Abeerah was very hyper and keep jumping and laughing on the bed. I gave her medication to sleep. Clean up kitchen and whole downstairs area. Keep trying to put Abeerah to sleep but she did not sleep all night long.
TUESDAY (Nov.21th) After sending every one to school, I took an hour rest. Then Zarrar and i went to get some stuff for thanksgiving dinner. We gather some stuff but before we reached to the cash register to pay, Zarrar receive a phone call from Ammar's school that he had half a day today and he is dropped off at school. I was not inform at all about this. So we left all our two hour of shopping effort there and drove to the school. Pick Ammar up and then we went to super market. Shop all the food items needed for the dinner. Came home on time to get Bilal. Then girls arrived. rest of the day did not do much. Just cook, feed, diaper change daily stuff. After put girls to bed. I clean up and Iron big pile of clothes. Abeerah was quite and calm today but she again did not sleep at night at all.
WEDNESDAY (Nov. 22nd) Every one have a half a day at school today. Ammar felt warm and Zahra had a bad cough. Abeerah fall a sleep early morning and she need rest. So only Bilal went to school today. Kids woke up one by one and i bring them down stairs. Abeerah slept till late. Zarrar was cleaning the leaves from the yard. I check the time and it was time to get Bilal. I ran to bus stop and did not see any one there. I ask a person cleaning the yard and he told me bus just left. Oh my, i ran to other stop but bus was gone from there too. Ran home got my bag and drove each stop to stop. It was so much rush on the roads due to all school are closing early today. Finally i reach to the school where kids drop off in the end. And Bilal just arrived there. We drove home. Abeerah woke up and i take care of her. after dinner, Zarrar left to work. Feed every one, Then i play with them, watch TV with them. Girls were very happy. Specially Zahra was hugging me and kissing me. When ever i am happy with them, in the end it make me really sad. Make them ready for bed and took them upstairs. Brush their teeth and put them to bed. Then Bilal help me clean up the house. Zarrar came with his sister and brother and take care the turkey. They marinated it with spices. After they left, i put Bilal and Ammar to sleep. Then i make stuff ready for stuffing for turkey. Cut needed things(onion, celery, mushroom and meet) in small small pieces. It was late so i went to bed.
THURSDAY (Nov 23rd) I woke up early when Zarrar came back from work. My sister in law, and brother in law was here as well. We work on the turkey to go in the oven so by 5:pm we can have it ready. After Turkey went in and every one left, i bring kids down stairs and feed them breakfast one by one. Zarrar watch the kids and i ran to the store to buy some more things needed for the dinner. Came back and clean up the bath room, living room. Make the dining table ready. Feed kids lunch. Zarrar check the turkey and start calling every one that turkey is ready so we can have dinner early. I got panic because every thing else was not ready yet. So quickly quickly, cook and cook. Set the table and every one came over. My brother in law cut the turkey and we all had a great dinner. We thank Allah for all the delicious food he provided us. I feed girls dinner. And i thank Allah with them for the food and of for the beautiful precious girls i have. After dinner, we had Qasim's special pies and fresh ground coffee. It was delicious. Every one left and i make girls ready, take them upstairs and put them to bed. I start to clean up the left overs and all the dishes. Clean up the kitchen. Ammar was not feeling good all day. He was very fussy and cranky. By night he felt hot. I gave him medication and put him to bed. It was very tiring day today.
FRIDAY (Nove. 24th) Stay in bed till kids were sleeping. Woke up when Zahra started to bang the windows. Start taking care the kids one by one. Whole house was a mess. After kids got settle down and feed them breakfast. I start to clean up because every one(Zarrar's Family) was coming over for dinner since we have so much food left over from yesterday. Zarrar Bilal get ready to go to Musjid for Jumma. Qasim (Zarrar;s nephew) came over. I feed kids lunch. Ammar was giving me hard time. His both eyes were closed and water keep coming out of them. He was very uncomfortable but do not let me clean them. Call the Drs. office but no one is there for this holiday weekend. I started to prepare food. Cook some new items and put left over turkey, stuffing and other food in the oven to warm. Make a big pot of turkey soup. Set the table. Every one enjoy the dinner. Girls love the soup. Abeerah and Khansa taking a long time to chew so soup was easy for them. After eating dessert, every one left except Qasim. Zarrar also left to work. Put girls to bed and i start to clean up. Qasim and Bilal went to bed too. I was washing dishes and cleaning the kitchen till 2-am in the morning. Check on girls and change Khansa's side because she stuck on the same place and can not move her self then i went to bed.
SATURDAY (Nov.25Th) Zarrar woke me up early when he came home. He had a foot ball game today so he wants my help to make his stuff ready for game. Qasim and BIlal also went to see the game. My early bird Zahra was up so i bring her downstairs and feed her breakfast. Then i put Barney one for her. Then Khansa woke up. She been lately very quite. I hardly hear a peep sound out of her mouth. She is so thin and feels fragile. I put her in the tub and gave her bath. After dressing her, give Zahra a bath. Bring both of them down stairs. Ammar woke up crying because he can not open his eyes. It was struggle when he do not let me touch his eyes. Washing with warm water open his eyes. Abeerah also woke up. After every one done with breakfast and feel comfortable. I call my brother back home and find out very bad news. My two brother and my cousin got in to an accident with truck and injured badly. But Allhamdu-lillah they are alive. Truck just climb on their car. Car totally crushed. they were lucky to came out alive. This news really upsets me.
Zarrar and Bilal came back. Their team lost first time today. Poor guys. Rest of the day I was sad for my family. Just did every day stuff of cooking, feeding and diaper changing. When kids are home, I change 28 diapers a day. Some times it goes to 30-32 when some one start diarrhea. Bilal eat himself but other 4 of them i have to feed myself one by one. Put kids to bed late. Ammar was very cranky. His eyes having lot of white and green stuff coming out. His eyes feel infection. I have to wait till Monday to see the Dr. He did not let me do any thing so I did not clean up today and just went to bed with him.
SUNDAY (Nov. 26th) Very boring tiring day. Did not do much today. Just take care the kids. Order pizza and we all eat that. Abeerah was very hyper and very loud today. Zahra jump and jump front of TV watching her favorite Mr. Barney. She was also very loud. Khansa was quite as could be. Only time i hear her voice when Zahra pull her hair band from her hair. Bad Zahra. Zarrar been working 7 days a week. So he left to work. Help Bilal his homework. Put every one to bed. Clean up the kitchen and make bags ready for school. Ammar start fever again. Give him medication and put him to sleep. Abeerah woke up and start making loud noises and laughing out loud. She stayed up rest of the night.
Tayyaba
Saturday, November 18, 2006 7:07 PM CST
WEDNESDAY I woke up little late so i was on the run. Wake kids up. Wake Abeereah up and she was in big diaper mess. So carry her to the tub. Give her bath and dress her. Carry her down stairs. Did not have much time. So fast fast make Khansa ready. Help Bilal to get ready. Make lunches and give girls milk to drink. Send Bilal out the door with Zarrar to bus stop. Zahra's bus showed up on the door. Oh man, They were 15 minutes early and she was not ready yet. it was new driver so he said he will wait for her. Abeerah and Khansa's bus came. Carry them to the door and aids help me to take them in to the bus. Then Zahra's turn, Change her clothes, put shoes and Jacket on and send her out the door. Then it was Ammar's turn. He did not like to get up. I was washing his face and brushing his teeth while he was still sleepy. Zarrar put his video on which open Ammar's eyes. Make lunch bag ready and give his breakfast and glass of milk to drink but he was so very tired. After he left to school. i was so tired and huffing and puffing. i really did lot of running up and down the stairs today. I clean up all the mess and dirty clothes all over. Make breakfast and Zarrar and i eat it together. I want to get some rest. But Zarrar have to go to take a class in the mall and he wants me to go with him and i need to buy Zahra's jacek too so i got ready. Zarrar took class and i did window shopping. Came back home. I receive phone call that today was half a day which i did not know and school did not send any note yesterday. Bilal was dropped at the school. I left to pick him up. Coming back stop and get bread, milk and other stuff. Came home just in time to receive Ammar from the bus. Zarrar went to bed. Zahra and then Abeerah and khansa came home from school. Abeerah was very hyper and crying time to time. Looks like she was in pain. Give her medication. Take care every one's needs. Ammar fall a sleep. Cook dinner. Zarrar woke up, eat dinner and left to work. I feed every one dinner. Help Bilal with his homework. Read story and send him to bed.
I was cleaning up fast because i was going to be called from GEO TV to be on live call with Nadia on Nadia Khans's show. I was done cleaning the kitchen and Ammar woke up. Feed him and take care of him. By 11am show start and i was told that i will be in the beginning call so i waited and watch the show. Then i went back to laundry and ironing. Then i receive call almost in the end of the show. I talk to Nadia. She was so nice. There was some problem in the phone. i was hearing people voices from the control room with Nadia's voice that confuse me up so i could not respond to her questions well. We talk about MPS and what it is and what will my Girls future will be. But call cut in between, i guess there program time was finished. I want to thank GEO TV to help me bringing awareness to MPS disease. ALso Nadia ask every one to pray for my girls. Thank you to Nadia and her team. I will try to get the video and see if i can post it here.
After the call I finished, it was 2am And i was very very tired. But Ammar made a huge mess every where with toys, books, papers and all his ABC cards every where. Picking toys and cleaning when we reach to bed, it was 3pm. I check on girls, Every one was sleeping tight. Great. I check my Alarm clock to make sure every thing is set so i don't get late tomorrow.
THURSDAY. I Wake up 6am. Start waking kids up and making them ready for school one by one. After sending every one to school. I was exhausted. Making 5 kids ready in an hour is a lot to do in when 4 of them completely depend on you. After having breakfast, i went to take some rest. I slept for little bit and want to sleep whole afternoon But i made promise to Bilal to come to his school and visit his book fair and buy some books for him. Got dressed and drove to Bilal's school. He was happy to see me and we both visit the book fair. He buy some book. He love animals so mostly books he choose about animals. I talk to his teacher and she said he is doing good. Then i stop by at meat store and bought some meat. Then stop at Block buster to return some movies. Came home and start cleaning up the house. Receive Ammar from his school bus. Me and Ammar walk to Bilal's bus stop to get him. It was very very windy today and leaves were flying every where. It was so beautiful. Came home. Then Zhara came and then Abeerah and Khansa came home. Abeerah did not look good at all. She was very uncomfortable and very upset. Make her comfortable. Give her juice to drink. Abeerah still feel very cranky and her eyes rolling up. I try to get her attention here but she keep looking up to the celling. Keeping her eye balls far far up. She keep curling up. Zarrar took Bilal to musjid and i made dinner. I play with Ammar and Zahra. Ammar fall a sleep. Zarrar came home and then get ready and left for work. Did not do much after. Just daily things, feeding, diaper changing, home work for bilal, Making kids ready to bed and Put them to bed, Abeerah was very hyper and she just keep rolling around her bed. I gave her sleeping medication. DId some cleaning and and some laundry. Check on girls, Abeerah was calm but sitting on her bed. She stay up most of the night.
FRIDAY. I Woke up 6am. Wake kids up and make them ready for school. Ammar give me hard time to get dressed. But when he saw his bus he was happy. After sending kids to school. Zarrar wants to visit his sister. Si i got dressed and we left to see her. In the way we bought some breakfast (Bagel, cream cheese and smoke salmon) for her. We all have breakfast and some talking for 2 hours. Came home, Zarrar went to bed and i did some computer stuff. At 1pm, we went for Jumma prayer. I ran back home fast to get Ammar. Zarrar's other sister was there so i invited her over. She did came over with her daughter. We all have a tea. Then i went to get Bilal from his bus stop. Came home and bus came for Zahra and then Abeerah and Khansa came home. Abeerah looks better today. Zahra was very loud today. SHe was jumping and laughing out loud. Make girls comfortable and give them juice to drink. I talk to my brother and he was packing up to leave to back home. That really upset me. I try to call the travel agent to extend his ticket but there is nothing available at this busy traveling season. Zarrar left to musjid and i cook dinner. We been eating only chicken in meat part for past two months and now very tired of it so i want to make it cook lamb with rice today for change. But do not know how it came out because i was not in a good mood today. My brother been here for past 8 years and a great support to me. Always fly here when ever i needed him. We talk a lot . And now he is leaving permanently to Pakistan. I do not know when i will be able to see him again. To visit Pakistan i need lot of strength to take 4 very sick, hyper active kids in diapers for 17 hours flight and $10,000.00 for plane tickets. Feed kids and put them to bed. Rest of the day i just tear up. It is very emotional day for me. I feel lost. Abeerah turning 10 years old also making me cry. I could not sleep rest of the night.
Monday, November 13, 2006 0:56 AM CST
This week been busy as usual. Monday Zahra was sick and tuesday and wednesday Abeerah and khansa did not feel good. THURSDAY and FRIDAY all NJ school was closed for teacher convention so almost this whole week kids been home and did not do much other than they watch TV, drink soups and medications. I have some plans to take kids out to places but due to not being well, we did not go any where.
SATURDAY. Woke up early. Every one was also starting to get up. Give girls bath one by one. After dressing them i bring them down stairs. after putting their video, i went in the kitchen. Bilal eat his cereal and went out side to help his father clean the yard. I made breakfast (oatmeal with fruits) and feed Zahra and Khansa first, then Abeerah. Abeerah takes long time to chew her food and need relax time when i have to feed her. Ammar woke up and i gave him his glass of soy milk to drink. Also give girls their sippy cups of soy milk. Send Ammar out in the yard to play with Bilal but he did not like the loud sound of blower, Zarrar using for leaves blowing. It was very nice and warm weather out side so i put girls jackets and shoes on and took then in the yard. Abeerah trying to stand her self lately which is really impressive to me since she was not doing her own for while. Also she like to walk but she goes back ward and fall. So she need to be watched all the time. Girls were in very happy mood and that make me so happy and relax. Kids play on the pile of leaves, then jump on trampoline. While i walk with Abeerah, i pick up all the small branches and put a side. We had pizza delivered from once a week meal program which Yasmeen and Husna started with some friends. I feed every one pizza. we stay out till it start getting dark. Zarrar just bought me camera since my old camera was broken. I took many pictures of kids. But i am not really happy with the result of pictures from new camera but thats what we could effort this time. I miss my old camera. I want to capture all the moments today because last couple of days was very emotional for me when i just sit and watch my girls not feeling good and Sanfilippo taking over them so fast. I was very happy to see girls were active and happy. Thank God for every happy moment we have with them.
I bring every one inside while Zarrar and Bilal was busy putting tools away. After taking Jackets and shoes off, i gave them juice to drink. Zarrar get ready and left to work. I feed every one dinner. Zahra tore up Ammar's favorite card and he just non stop screaming. He been holding that grapes picture card day and night for couple of days. Now he keep bringing to me to fix it. i try but he was not happy so i drove to the store with him and buy him new set of cards while Bilal watch kids and i stay on the phone with him. Later we all watch Garfield movie. Zahra laugh and laugh watching Garfield Dance. Then i make kids ready to bed and bring them upstairs one by one. Put them to bed. Bilal and Ammar also went to sleep in my bed. It was a busy day for them with all the running and jumping today so all went to sleep fast. I clean up the play room, living room kitchen and did some laundry. Then i went to bed very late.
SUNDAY I woke up when Zarrar came home from work at 6:30am. We had coffee together and went out side to pick chairs and stuff up because it was going to rain today. He also check the gutters to se how much work is there taking all the leaves out blocking the flow of water in time of rain. I came inside after hearing Zahra banging on the window. Take care of her and bring her down stairs. Every one was up by 7:30am. Did not do much today even i had many plans to do many things and take kids out. But rain make it cold outside so i do not want girls to get sick again.
Me and Bilal went for walk two blocks. I love the rain and fall season. Came back and cook dinner. Zarrar left to work. I am not seeing him much these days. He is working 7 days a week and when he is home, He is making up with his sleep. Poor guy. Abeearh wants to stand and walk around but she falls couple of time in trying to stand up so i have to put belt on her when i have to leave the room.
Find out Bilal have tons of homework to do when he said on vacation there is no home work. Help him with his home work.
After feeding kids Dinner. The most harder job i did which i hate to do is cut 5 kids nail from fingers and toes. Man! kids nail do grow very fast. Bilal is ok to deal with but other 4, i have to struggle with them to cut their nails. I am trying to cut nails while they constantly on moving and pulling their finger from my hands. And i do not want to cut to much which is worst for me to deal with their blood and pain. Oh my, when i was done, i was huffing and puffing. In total I cut 100 nails. Make kids ready to bed. Carry abeerah and khansa upstairs and put them to bed. Zahra walk up stairs herself. Then same thing cleaning the kitchen, living and kids play room. Make 5 Kids bags ready for school tomorrow.
Tayyaba Beg
Thursday, November 2, 2006 10:28 PM CST
Its been while since i update here. I was unable to make time to come online in last busy days of month of RAMADAN and then my internet connection had problem to get online. Finally every thing is fix and i am back online. I have so much to share with you all but first i want to thank you all for keeping us in your thoughts and prayers. I received tons of e-mails asking for update and wanted to know how are the girls doing? I really appreciate every ones nice words of support.
We had a great holiday here. My brother visited for two days in end days of Ramadan and end up spending EID with us. It was nice to have him with us.
ABEERAH. Abeerah suffer with fever, cough and runny nose for few days. She been very hyper for last few days. Also going in to laughing and laughing really out loud about 10 minutes straight and end up crying out with tears. One of the MPS child's parents said they experience the same thing and their Dr. told them it is some type of seizures. I hope she does not continue with this type of behavior. She also have couple of days bad diarrhea.
KHANSA Khansa is doing good. She having a good days at school. I am still worry about her weight loss. She feels uncomfortable when i change her clothes or diaper and when she given a bath. But she been eating well and sleeping through out the night. Stay quite and calm most of the day. She is so sweet.
ZAHRA Zahra had a bad cough all this week. Very active, hyper and making loud noises the minute she wakes up in the morning till she goes to bed at night. Do not sit for minute and keep jumping around. Last week she make a police visit us when she took off right behind my brother who did not know that he need to make sure to lock the fence door when he leave the house. I find her missing in few minutes after and went to look for her. My brother also spot her outside behind him and bring her in but some one else saw a little girls on the street and call the police so i have to go all in details with the police.
BILAL Bilal is doing good. He is very happy bringing no note from school in two weeks. I am very proud of him on this one. Getting a lot of homework from school. He is getting better in writing. He is also taking a sign language and doing best in that. Last week, Some little boy close the door on his right foot at the musjid and his toe got hurt badly. Not completely healed yet on top he fell in school and hurt his elbow. Poor kid.
Ammar. HAPPY BIRTHDAY TO AMMAR. Yes, My little boy is three already. Seems so little to me. His Birthday was great. Night before our great friends from Grace redeemer church drop a surprise visit with Cake and gifts for Ammar. It was really nice of them making Ammar's day beautiful. On his Birthday i invited Zarrar's family for a small get together. Ammar had a great time with all his cousins. I took tons of pictures but unfortunately in the end my camera get in kids hands and in pulling one to other, it fell on the ground and broke. So sad to see all the pictures got destroyed.
Last whole month(October) we been very busy and frustrated day after day with Child study team to place Ammar in school on his birthday. I can tell you one thing that you have to have lot of patient to deal with them and we did that 4 times. Every time you think that you learn and you are expert but can not win from them. Long story short after doing every thing, i thought Ammar will start school on Monday after his birthday but find out there is no transportation available for him for first week and i have to drop him off and pick him up from school. I could not do that when i have to receive other kids from school buses. With some pushing and struggling, Ammar got bus and he start school on Wednesday. HURRY!!!! His first day school. Man it was hard for me to let go my baby who been stick to me like a glue past three years. He follow me around every where. Even at night, i wake up to check on girls and he gets up and follow me there too. I was so worried, what if he needs me. Oh well, then i said to my self, i have to be strong here. I done that 4 time before not like i am doing first time. Zarrar and i visit the school to check on him and he was doing fine. He went happily in the bus on his second day. At home without kids felt really strange to me. I never been without kids for that many hours since Abeerah born but good thing is that i have some times now(if all make it to schools). I visit post office, bank and some other things taken care which been sitting a side and waiting to be done for months. I hope this program is good for Ammar and he can over come to his Autism.
Tayyaba
Monday, October 9, 2006 5:09 AM CDT
This week went great. Abeerah and Khansa did good. Very quite and very calm. Sleeping better through the night. Khansa have little trouble with constipation.
Zahra feel uncomfortable with her teething pains. Crying out loud time to time. But she feels better after having her medication for pain.
Ammar having a sleeping issues. He is not sleeping at night at all. he is very active at night. He walks around up to some thing here and there to keep himself very busy. And during the day very cranky and sleepy with his therapists. i try to put him on Benadril but did not have any luck. Because of him i am also having not much sleep. Ammar's 3rd Birthday coming on OCT28th.
Bilal had a great weekend. He get to spend a night with his cousins. He kept 5 fasts so far.
Tayyaba Beg
Tuesday, October 3, 2006 2:39 AM CDT
All Thanks to One mighty GOD. He is great. WIth all of your prayers and blessing of the RAMDAN, Weekend went great. Girls are doing better now except of cough and little runny nose.
Zahra is still having a crying episodes going on and her fingers constantly touching her teeth. Dentist checked her teeth and she is teething for her Molars both sides. Also her front teeth are coming so she is very uncomfortable and cry out loud and we can not do much about it. I am keeping her on Tylenol and Mortrain to ease some of her pain.
Abeerah did not have more seizures so far thank GOD but need to see a neurologist this week to run some tests on her to stay on safe side and able to control for if more to come.
khansa's blood result is not back yet but she look little better and happy this week. I started her on Amino acid to boost her energy level. She went up the stairs with me with holding my hand when i was carrying her all the time. I hope she gain some weight fast.
Bilal doing good. He kept three fast so far and very exited to do more. But i am keeping him on weekends only. He is a helping me a lot with little stuff around the house and with kids. He loves to cook with me at Iftar time.
Ammar having a lot of tantrum issues going on. he is constantly up to something and i have to keep a close eye on him so i don't have to clean up bigger mess. He is listening better and responding to his name better. Hopefully we hear from his child study team soon for placing him in school on his birthday.
Me and Zarrar's work hard to fix girls room last week. Rabie(Zarrar's nephew)help in demolish work. there was no insulation in the walls and room always stay cold. Now we install insulation in the walls and hopfuly it will be a big difference in freezing winter. I am happy we able to give nice and clean room to our daughters. It is much easier to clean up now. Still need curtins and furniture.
MONDAY (October 2nd) Ammar kept me up all night long. So after doing saher and prayer we all went back to bed because every one was off from school today for jewish holiday. Woke up and take care the kids needs one by one and bring them downstairs and feed them breakfast.
Did cleaning and laundry. After feeding kids lunch and cleaning them, I left them with zarrar to watch kids and i took Bilal to mall to get him some shirts because it is getting cooler and kids have no warm clothing. After shopping for some clothes, stop at Toys R us to look for gate to keep Zahra in the safe room since we fix the room having a hard time without the child safety door. Try to put whole a lot of furniture front of the door but Zahra is strong and always push it and get through. But they did not had what i was looking for. I have to drag Bilal from that store. 5 wish there is policy of the toy stores that no kids allowed. Parents shop alone. After we stop at super market to pick up some pastry dough to make some vegetable filled patties in oven for Iftar since every one want to switch to non fry food because we been eating so much fry foods for iftar but i look every where and ask for help but no one could find me what i was looking for. I was upset because i made whole pot full of vegetable mixture and what i am going to do with that but right then i spotted the sheet in the freezer. i was so happy that i am not going empty handed when i was already late. when i turn around, Bilal had the cart full of his junk food stuff and he do not want to leave his hard work so i could not go to fast lane and end up stand in a long line to pay. Reach home right before Iftar and first thing first was changing every ones diaper. Then i made fruit salad fast. Zarrar and Bilal went to Musjid and i open my fast with girls. I love opening my fast with them and sharing food with them. Zarrar left to work and i feed every one dinner. I need to clean the girls bed sheets for them to go to bed but i end up cleaning and re arranging their whole room. I mange to fit the little bed in there for Zahra since she been sharing the bed with Khansa and always wake her up in the middle of night. Put girls to bed. Help Bilal homework and clean up the kitchen and living room. Make every one's clothes ready for school tomorrow. Ammar again keep jumping around and keep me after him picking things, toys, shoes, papers and clothes where ever little tornado Ammar pass. With some struggle i put him to bed.
Sunday, September 24, 2006 2:07 AM CDT
First thanks to all who wrote in our guest book and praying for us. May Allah bless you all.
Sep 27th. Last two days was really really busy here. All three girls came up with high fever, coughing and runny nose. Also some throwing up going on. We been very scared of Abeerah's seizure and keeping our close eyes on her. I took her to Dr. and get in details with her. Abeerah need to see a neurologist and she need a complete check up. She need her MRI and EEG done soon. And she might need to admit in the hospital. Abeerah did had an other minor seizure again on Monday night. This an awful thing to deal with. My heart goes to all the parents and children who deal with this. I hope her neurologist can able to control them with medications.
Zahra still crying a lot most of the day. She is very hyper and nonstop moving. Finally her DR. is back from vacation and we will see him on Wednesday morning.
Khansa is feeling very weak. She lost 4 pound this month. Her hands and body constantly shacking. She is in skin on bones. Dr. took her blood test to see what is going on and hopefully we will know soon that why she is loosing weight fast even she is eating very good. My heart breaks when i am changing her or giving her bath.
I did not had much sleep in couple of days. So Zarrar took Ammar to see child study team to evaluate him so he can start school on his third birthday. We having a hard time with Teaneck board of education for placing in school. His third birthday is on OCT 28th. His therapies will stop from early intervention and i hop he do not go through a lack of therapies which is not good for him. He will loose or get in delay again with all the stuff he had learned with therapist over a months and months period of hard work.
Zarrar also went to Bilal's back to school night. Bilal need help in his hand writing. He is doing good in every thing else.
Oh Allah, burdens not a person beyond his scope. He gets reward for that (good) which he has earned, and he is punished for that (evil) which he has earned. "Our Lord! Punish us not if we forget or fall into error, our Lord! Lay not on us a burden like that which You did lay on those before us. Our Lord! Put not on us a burden greater than we have strength to bear. Pardon us and grant us Forgiveness. Have mercy on us. You are our Maulâ (Patron, Supporter and Protector, etc.)
Sep 24th. At 9:00 PM, Abeerah had her first very bad seizure today. That shook her up bad and it lasted for two minutes. Which just took my heart out. I been hearing about it but never thought it will be so soon and its like that. I did not know what to do at that point. May Allah have mercy on my Abeerah. She is also having a very high fever right now. Need your prayers.
We start month of Ramadan today. This is a blessing month. O Allah for us let this month be a period of peace, faith safety and total submission to Thy will; make us walk apace swiftly to that which Thou likes and approves. O Allah pour out much blessings on us in this month, make available for us its generous good and assistance, and keep us safe from the harm, evil, misfortune and mischief that may try to trap us in this month.
This week went really busy. We been trying to replace the carpets with wooden floors becasue every one here is allergic to capets. Girls room need constant cleaning and with capet is it too much to do. Me and Zarrar been working around the clock to put piece by piece to get the job done. It is a lot of work.
After Zahra's surgery hard part was her recovery. She needs a lot of supervision. She want to climb and jump around but because of the stitches i need to keep her relax. It gets really difficult when she see Bilal and Ammar jumping on tramplain and she wants to get on too.
She was feeling better for some days. I was really happy that her problems are gone. She started school from wednesday with a note frome her DR. Also she can not go to gym for two weeks.
Now Zahra is not feeling good again. She started crying from Thursday night out loud. She keep pulling her teeth with her fingers and drooling a lot. School nurse think that her teeth are bothering her. And now it is weekend, my kids have a history of going sick right on weekends when no Dr. is available. She is back on Codain now but do not seems to help her much.. Need prayers for her again.
Tayyaba
Saturday, September 16, 2006 10:53 AM CDT
My poor Zahra went through so much some months. Drs. could not find the problem of her crying out loud. she was crying most of the day and day after day. Her crying did not stop even after the dental surgery was done and then she was treated for reflux. Week ago i saw she having a hernia. Friday i took her in ER because she cry 4 hours straight. But i was send home because Dr. think it is not the hernia making her cry. They gave her medication for reflux which given her for some days but she was crying the same. Finally we got schedule for surgery. There is no other way, hernia to get better. Surgeon Dr. Valda was recommended by our pediatrician and our genetics. He saw Zahra day before surgery. Zahra in ER
THURSDAY Woke up early and make Abeerah, Khansa and Bilal ready for school. After girls left, Zarrar went to drop Bilal off at bus stop. I clean up little bit and put thing together for Zahra for surgery. Couple of hours before the surgery, Dr. calls us and tell s us that my insurance is not proving for the surgery. I start freaking out. Because couple of hour in surgery and Zahra is in pain. I do not want to cancel it for today. I want to take her pains away as soon is possible. Zarrar came back and he also got worried because he spend so much time with Dr.'s office about the insurance part. We get in touch with our insurance case worker. I was about to jump out the building. Zarrar said we have to cancel it for today. Long story short, our case worker help us out here. She call us and told us not to worry. She is a very nice person and GOD's gift to us. I want to say my special thanks to Susan Bunddy for her help. I don't know what she did but we did receive a call that every thing is set and surgery will took place on schedule. That give us big relief. I don't know what we would do without her. I give Zahra bath and make her and Ammar ready. Get dressed and we were out the door going to the hospital. It was raining bad. Zarrar drop us at the front of the hospital and went to park the car. I sing her in and wait for our turn. We call in for paper work. Most of the staff there start to getting to know us because it was our third OR visit within 4 months period and many hospital visits. We call in a room, dress her in gown. Nurses play with her while we talk to the surgeon and anesthesiologist. I went through every thing they needed to know. Zarrar was going in Operation Room with her so he dress in overalls. i said good by to my baby girls and came in waiting area with Ammar. Zarrar came back after 10 minutes.
After hour and half of waiting, praying and drinking many cups of coffee, Dr Valda came over ad told us every thing is find. We ask to repair hernia her both sides so in future other side don't bother her but he said they did cut both sides but only one side was big hernia and other side she did not need it to do any thing. I was call in the recovery room. Zahra was getting up from Anesthesia. She really struggle. An hours of struggling and getting many kicks, head bangs and get a cut lip, Zahra calm a little with pain killer. I want Zarrar to help me with her but he could not able to come in with the baby. FInally Zahra drink apple juice. We were moved in a room. Zarrar went to pick Bilal up and took Ammar with him. Zahra eat some cherries and drink apple juice. Then she fall a sleep. NIce friend of ours from Church visit us and bring a bear for Zahra. It was so nice to see some one really cares and there for us. Thank you Will Reinmuth and his church family. After i ask for discharge and nurse help me with paperwork. I change Zahra and we were out the hospital. Zarrar, Bilal and Ammar came to pick us up. Reach home right on time to receive Abeerah and khansa. Try every thing to keep Zhara sit down but she keep walking around. She was little fussy. I gave her pain medication. I need to keep an eye to change her diaper right away to keep the stitches clean. Zarrar was really tired. He took some rest and then he left for work. I feed every one. Feed Zahra soft foods. She was very happy. Abeerah keep crying time to time. Then make kids ready to bed. Take them upstairs. After putting girls to bed. I help Bilal do his home work. Then he went to bed. Ammar kept me awake till late night. He continuously up to some thing. I had a very very busy day and i felt really tired. After checking on girls and Zhara, i went to bed.
FRIDAY. Abeerah and Khansa did not feel good so they stay home. Zahra stay sleeping and i want her to get some rest. I took abeerah and Khansa out of that room and bring them downstairs. Bilal got ready. I made his lunch box ready and Zarrar took him to the bus stop. Zarrar and i work on our new floor in our living room witch we put a side for the surgery. We are removing our carpets since we all having a allergy from the carpets. Putting a wood floors are lot of hard work. I am happy that no more vacuuming and shampooing the carpet for me. Zahra woke up. I feed her breakfast. She was very happy today. Rest of the day we did not do much. Just cooking cleaning washing laundry and taking care the kids. Zarrar was busy bringing stuff back in the living room after the floor is done. After Dinner, Make kids ready to bed. It was a much better day with Zahra after a long time. she did not cry at all. i felt so relax watching her happy. i hope this was it for Zahra. And no more pain for her. Girls went to bed but Ammar stay up. He always doing some thing bad to keep me very busy.
Tayyana beg
Tuesday, September 12, 2006 11:12 PM CDT
9/14/06 Zahra having a suergery today at 11:00am at Hackensack Hospital. Need your prayers.
I want to thank you all for your support and prayers. Sorry for not updating due to my computer broke down and send it out for repair. That is the reason i was unable to update. Finally i got it back today and i have so much to tell and many pictures to share with all of you.
First of all need your prayers for Zahra. She is not feeling good. She been crying a lot. since last week she been crying more than usual. On Friday we visit ER with her because we discover she is having hernia. Drs. at Hackensack hospital think that her crying is not the reason of hernia. Actually her cry out loud cause the hernia. But we do need to repair it as soon as possible. Now we are in process of setting the date for surgery hopefully before end of this week Zahra will be going in OR. Just last month she was in OR and had her dental surgery done. My poor baby. She is going through so much. My heart breaks. May Allah Make things easier for her. AMEEN
Abeerah also crying out loud for last two days. Pain medication is not helping her.
I had a very busy day with Zahra and Abeerah today and having a very busy day tomorrow with three appointments for girls. Need some rest. I will update in detail soon.
Tayyaba
Sunday, August 27, 2006 7:05 PM CDT
Last week went very busy but exited. We took a trip to Indiana to attend my cousins wedding. 12 hour drive to Indiana with kids was a great adventure. Wedding was on for three day. We had a great time. Zahra was not happy most of the time there. She do not like crowd or loud music. Abeerah did not sleep there at all. Other than that, meeting with all the family members was really nice. Dressing up was nice for a change in my busy life. We stay at my sister's house. My niece help me a lot with kids. Bilal had a good time and he made may friends there.
Now we are back and getting ready for kids back to school stuff. Abeerah and Zahra not having a good days these days.
DAY 1
DAY 2
DAY 3
Tayyaba
Sunday, August 13, 2006 2:25 AM CDT
First i want to say Thanks to all of you praying for us and keep checking back on us. Girls are little better now. Weather also got little cooler. Thank GOD for that.
MONDAY-TUESDAY-WEDNESDAY Usual days here. Zarrar comes home at 7:am from work and watch TV for while and then he goes to bed. For summer vacation, i don't wake any one up except Ammar for his therapy but rest of the kids get up on their own when ever they want to. So there is no routine these days. Zahra, and Khansa are early birds but Abeerah(if she sleeping that day) and Bilal sleep late. Each one fed breakfast different timings one by one. So till afternoon i am busy i kitchen. Ammar stay busy with his therapies most of the day. Girls watch TV. If i am not doing diaper changing or feeding then i am busy with laundry or cooking. Bilal goes to his Arabic class close by for an hour. Zarrar leave to work after eating his lunch/dinner. In the evening i take kids out in the yard. Girls walk around. Zahra love jumping on the trampoline.
Bilal and Ammar goes in the small pool and girls enjoy watching them. If thing are under control then i give water to the plants. I grew plenty of flowers and vegetables in our back yard. Khansa love watching the colorful flowers and get happy if she sees a butterfly flying around. We stays out till its gets dark. After coming inside. I feed them dinner and then time to make them ready to bed(brushing teeth, putting night time diaper on and changing in to comfortable clothes on). Then i carry them upstairs to their bedroom. Abeerah and khansa goes to bed first. Then i wait for while for Zahra to go to bed. She usually crying out loud at that time. Dr. think she gets overtired because she stay very active all day. She do not sit for second and always jumping around. For her to going to sleep, room have to be very dark and no light. If there is any light in the room, Zahra will stand all night long staring at the light. Then i clean up girls play room and kitchen. Teach Bilal(math, reading or writing stories or Quran). Then Bilal goes to bed. Then i go to bed when Ammar is ready. If any girl stay up that night then i bring her downstairs and i stay with her so other don't 's get disturb. That is the daily routine at Beg house these days.
THURSDAY.
HAPPY BIRTHDAY TO BILAL
After every one get done from eating breakfast. Zarrar gave Bilal a present.(video game) He went out to play with his neiburs. I made a cake quickly with watermelon and fruits to cheer him up. Call him inside to cut the cake and he was so exited to see the cake made out of fruits. we all enjoyed eating fruits. Then i get ready and make ammar and Bilal ready but before i leave, first make sure that girls are fed and diaper were clean. Zarrar was going to watch them while i took Bilal out . I left with both boys. Our plane was to see a movie(Barn yard) but when we reach there, Movie was already start so we went to toys are us hoping to be back before next showing. If it is all up to Bilal he would buy the whole toys R us store but i can not afford that. So wants to get BEN TEN WATCH for long time and he been waiting for his birthday for that present but they were out of that. Which was very upsetting fro him. But he got some action figures and colors markers. Ammar got tiny Dora and boats dolls. He loves dora. After we pay every thing we went back to the movie place and guess what it was already started and i can not wait fro next show so we just bought pop corn and soda so Bilal don't get upset and came out. Came home and get busy with girls, they need my attention badly because Zarrar do not change diapers. He is just a baby SITTER. After i done taking care the girls. Make lunch for Zarrar. After eating he get ready to go to work. My sister in law call to tell me that they(brother in law and his family) are coming over. They came over with presents and chocolate cake for Bilal's birthday. Bilal was so happy to get all the presents(games and back to school stuff). I made tea and we all enjoy out side Bilal's birthday cake. After they left, Zarrar went to work. Feed girls dinner. And make them ready to bed. After putting them to bed. I clean up the kitchen. Bilal receive many calls from his uncles and Aunts and from his cousins to tell him Happy Birthday. Some calls came from over sea's. He was very happy to have a great day. I am glad he did.
He play with his toys till very late while i did some sewing. Before we went to bed, i have a long talk with him about being a 7 years old and being the best brother he could be. He fall a sleep but before i close my eyes, i got allergy attack and i was very uncomfortable with my very itchy eyes and non stop sneezing. I could not sleep till i see the morning light out side.
FRIDAY. I woke up after having just an hour sleep with Zahra's little fingers touching my face. Then she start to climb on me. My eyes was very red and popping so big that i hardly could see any thing. Took allergy medication and then i was able to take care of her. Bring her downstairs and give her milk to drink. She got happy when i turn Barney tape on. Every one stay in bed till late. Kids wake up and i take care of their morning needs. Bilal and Zarrar went for prayer. I cook breakfast/lunch. Feed girls and Ammar. Then Zarrar and Ammar came back and they eat lunch. Zarrar went to drop the van off to get the AC fixed because its been very hard dealing without AC. Also needed to be tune and fixed for our coming trip to INDIANA. We just stay indoor most of the day. Zarrar left to work and took Bilal with him to drop him at his cousin's house. I can not go pick him up so he spend the night there. I watch TV with Abeerah, Khansa, Zahra and Amamr. I follow some exercise from TV and Zahra and Khansa laugh so hard watching me copying and jumping around. Then i put them to bed. Ammar was not sleeping. he wants to play with Bilal's birthday gifts. So I watch a Movie "Must love dogs". Movie was good but I cried. I always cry when i see any movie have three daughters in it. That is very emotional for me. So after i could not sleep at all just wondering if my daughters could talk, how will be the sounds in my house. And how much fun it must be watching three sisters playing or fighting over little things.
Tayyaba
Monday, August 7, 2006 1:32 AM CDT
This week was not a great week here at beg house. Lots of crying going on with one kid to other. Its been very hot and girls having a very hard time dealing with it. Abeerah and Zahra not feeling good and can not figur out what is bothering them . And my allergies made every thing harder to deal with on top. Need prayers for Beg family for coming days are better and cooler days.
THURSDAY.
After sending girls to school. I wake Bilal up and send him to get ready for his class. He miss classes last two day already due to my allergies made made unable to drive. He came down and we were about to leave when Bilal need to use the bath room. I lay down (being very tired after making Abeerah, Khansa and Zahra ready this morning) in waiting for Bilal to come back after getting done his needs. Woke up when he was calling me saying lets go. Before i step out with him i saw the time and he was hour and Half late so it was not the right time to take him in middle of the class so he miss his class again today. We had breakfast, Wake Ammar and they both play around and watch TV stuff. Ammar had a busy couple of hours with his therapist one after other therapist. I did some sewing for girl's summer clothes. Abeerah, Khansa and Zahra came home from school. Abeerah and Zahra was not happy. Its been really hot here and that also making them very uncomfortable. I am trying to keep them cool. Try to keep them in water in the pool or tub. My afternoon is passed just taking care the girls, one after other. Make Bilal ready and send him to Musjid. By the time he return i was ready with girls to go to chuckee cheeses. Even it was so much for me specially when my allergies do not give me a break. But i know girls will love it going out and Bilal been asking me to go there for long time. First every one there start staring at us when we entrered at chuckee cheeses, well deal with that. Bilal disappeared in games the moment we walked in. I order food and get the table closer to the games and rides so kids can see every thing and i can keep an eye on every thing. First girls was calm in nice cool air conditioning. They enjoy watching kids running around and many color full lights on and off. Ammar was so exited in kids area. I took Zahar and Ammar on to different rides.
Food arrived but Zahra's mood changed from calm to very upset to crying top of her lungs. I did not know what to do, leave all food there and take every one and go home or just let her cry out. During eating she stop crying and every one eat good. Ammar was so loving there. He dip his french fries in to sour cream and them in ketchup and eat by himself very good without any mess. I was surprise because at home every thing front of him ends up on the floor and then end up polishing the entire room and furniture. After feeding them all, i could not stay any more because Abeerah and Zahra both was crying out loud. push kids wheel chairs and drag angry Bilal (who wants to stay more) out of there. Reach home 10:30m. After bringing every one in, Changing dippers and brushing teeth, I put them to bed. Abeerah decided not to sleep that night. So i kept her downsatirs. BIlal Made beds in the living room and after doing all the cleaning and putting toys away. Went to bed with Bilal and Ammar.
FRIDAY.
Wake up early and send girls to school. Today Abeerah and khansa's last day at summer school. No class for Bilal and no therapies for Ammar today so i want to have some rest while Bilal and Ammar was sleeping and Zarrar went to sleep to right after coming back from work. But telephones ringing keep waking me up every 20 minutes. so i give up sleeping and watch TV instead. then wake kids up. After Breakfast, send Bilal to take a shower. He came down ready for Jumma prayer. Then he left with his father for prayer. Girls buses came one after other. But they all came very cranky. I try to make them calm in and give them cold juice to drink. Give their pain medications. But Abeerah start crying out loud and then Zahra start crying with her. Then Khansa join them. All three girls was crying out loud and i felt so helpless.
Keep doing what i can to make them stop. put them in separate places so they don't get bother by each other. I call the Dr. but she was out for vacation. I ask to fill the prescription for Codeine but they told me that i have to take the girls to psychiatrist. Finally after back and forth, get the prescription. Zarrar and Bilal came back from the musjid and i went to pick up the prescription, diaper and wipes. When i get home Abeerah and Zahra was still crying but Khansa got quite but whinny. After hour later Zahra was happy again but Abeerah did not get any better. Took her in the back yard and then took her for walk but she was very upset and crying a lot so i could not stay out, With Bilal's help i pick up toys from the yard and Zarrar cut the grass which been growing really tall. And after he left to work.
Later i cook and feed every one. It is very hard to change diapers or feed Abeerah when she goes in to crying like that. Make girls ready for bed. Abeerah was tired and i was hoping she goes to sleep tonight. Clean up. Did laundry and play with Bilal and Ammar. They both went to bed late. Abeerah woke up in middle of the night crying. I try all my ways to keep her calm but it was emotionaly very upsetting night for me.
SATURDAY.
I did not had much sleep last night. I just fall a sleep in the morning for hour or two but Zarrar wake me up when he came home from work. He need help to put his stuff together. he was going for paint ball fight with his friends. He left after breakfast. Ammar woke up and then Zahra wake up too. We all three spend some time in the backyard. Came in and bring Abeerah and Khansa downstairs after taking care of them. Made breakfast and feed every one. Bilal woke up and i give him breakfast to eat. So far Abeerah was having a good morning. Which was great. I got ready to go out for appointment with a lady who sell cloths. Laila and Sara came over. Both girls was going to do the Baby sitting for my kids. they are our new baby sitters. I tell them all they need to know and walk out.
Meet the lady and her beautiful kids. I had a good time talking to her girls. I never want to leave their house. Then i made two more very quick stops to get couple of things i need and then i came home. First thing i heard Abeerah's crying when i entered. baby sitters left and i took it from there. Received Pizza from our nice friend. Rest of the afternoon we stay in and stay cool. My sister in law drop Humza off on Bilal request. Bilal was happy and they play around. I took every one in the back yard and we spend our whole evening in the back yard. Abeerah was very upset and cry out loud time to time. Boys stay in the pool and i watered the plants. Zarrar came home and he was very tired. He was working tonight so he went to get some sleep. I bring kids inside and feed them pizza. Boys wants to eat Hot dogs which i cook for them fast. Make very one ready and we went to drop Humza off. Coming back stop and get ice cream for kids. Came home and bring them inside. Put girls to bed but Abeerah was not close to sleep. Bilal and Ammar stay up late and play around when i clean up the kitchen, And fold some laundry and put away. They both boys went to bed. Abeerah started to scream out loud. So i keep her in the living room with blasting Air condition to keep her cool But she cry and cry all night long. Dr. think that her canine are coming out and that is bothering her. I put Orajel on her swelled area. Abeerah stay up and crying and screaming all night long. I was very tired today and i have a busy day tomorrow so i put her in a safe room and went to sleep next to her in the living room.
SUNDAY.
Woke up when Zarrar came home. Abeerah was still awake and she was very cranky and whinny. I change her diaper, give her milk to drink and went back to sleep. Wake up again when Zahra touch me with very sticky hands. And i just ran in the kitchen to look. Oh my my. It was a disaster. She through every thing on the floor. Zarrar bring donuts this morning and they were all in to a powder and on the floor. Well, i clean her and put her in the room. Give her milk to drink and clean up the kitchen. Then check on Khansa and she was awake. She was very wet with her diaper leaking due to wearing small diaper because i am out of her diapers and we did not receives the delivery. GIve her bath and dress. Bring her downstairs and give her milk to drink. Then took Abeerah and Zahra up, give them bath, dress them and bring them downstairs. Wake Ammar and after his bath and dressing i bring him down stairs. send Bilal to get ready, Feed kids breakfast and went to get dress. When i came back there was fruit loops cereals all over and every where. because Bilal open the door for Zahra and Zahra get in the kitchen and get the open box of cereal and she walk around and around with box facing down. And on top abeerah been crying on top of her voice. I start freaking out and start getting mad on every one. We were invited to B-B-Q to Zarrar's friend and he is telling me that we are late and every thing was going wrong here for me. Zarrar sweep the floor and i put shoes on kids. I did not want to leave till abeerah calm down. But there was no signs of that. Zarrar do not want to go without me and his friends start calling. Zarrar help me take kids in the van and we drove to his friend's house. As soon as van start Abeerah stop crying. So great.
Zarrar and his friend Kamal help taking the kids inside. Girls did well there and we eat and eat. After we done eating, Abeerah start getting uncomfortable and then Zahra started so i start putting them in the van. Auntie wants up to stay but i know if i did, no one will be pleasant because Abeerh's loud crying is not an easy noise to stand up for. Say good bye to every one there. we had a great time. Came home and make girls comfortable. Bilal and Ammar spend time in the pool. Rest of the evening we stay inside taking care the kids. Zarrar left to work since he is working seven day a week these days. Did the usual stuff, putting kids to bed and cleaning after stuff. Boys play around till late.
Tayyaba
Saturday, July 29, 2006 7:18 AM CDT
This week been little difficult for me. I am suffering from bad allergies. With watery, itchy eyes and head ache all day long make things very hard for me to take care. My laundry help Lilli did not show up for two weeks and i have lot of running around to do up and down with laundry. Hot weather making girls very uncomfortable. Abeerah not having a happy time with her teething. Her Molars started to showing little bit out. Zahra still crying out loud every evening for two hours and now i know it is not the teeth bothering her. Khansa is suffering from lot of pain in her joint. She is cry every 20 minute with joint locks up and i have to change her position for her. Ammar did not show any improvement at all and i am seeing he is regressing more. Bilal is taking class for swimming and he loved it. He is frustrated that I am not taking him out to places more. Due to no air conditioning in the van, i am unable to get out with girls. They can not take the heat.
FRIDAY Woke up when Zarrar came back home from work. After sending Abeerah, Khansa and Zahra to school. Make breakfast and hang out with Zarrar. We watch TV, 100 channels in one minutes. Zarrar is very good at watching all the channel at same time. Kids woke up and i got busy with Bilal and Ammar. Zarrar left to get his tire fix and get new contact lenses for himself. Abeerah' school nurse call and tell me Abeerah been crying out all morning. My poor baby. School is closing soon. Bus was going to pick her soon so there was no point for me to go and get her. I make Bilal ready for Jumma prayer. Zarrar came and had a bite to eat, get ready and left with Bilal for prayers. i receive Zahra and then Abeerah, Khnasa from buses. Make them comfortable. Girls get busy watching BARNEY, I took a quick bath my self. Zarrar and Bilal came back. I was not feeling good with my allergies so i went to lay down for little while. Zahra started to cry and cry. I try every effort to make her calm. Give her pain medication. Ammar's therapist came and he got busy with her. Zarrar left to take care some of his stuff. My sister in laws came over. We talk for while but with Zahra's screaming, no one could hear any thing. She wants to go out on trampoline so i let her, Saw her jumping and ask Bilal to make sure if front gate have lock on. but not a minute later when therapist was leaving find Zahra out and other side of the fence on the road because Bilal got busy playing with his cousins. That was scary. But thank GOD Therapist grabbed her before she ran on the main road. My sister in law took Bilal with them, i feed girls left overs because i was unable to cook with my non stop sneezing, watery eyes. This making me so uncomfortable and hard to deal with any thing. Clean girls bed room. Zahra and Abeerah not happy today. Make girls ready to bed after dinner. Took them upstairs and put them to bed. Did some laundry which just make things worst for me with my allergies because there is mold in the basement with all the water leakage and all the moister in the basment. I sneeze 89 time in one hour. So call Zarrar to pick Bilal up because there is no way i could drive. Zarrar drop Bilal off in his way and left. I took every medication was out there for allergies. But only thing these medication do to me is make me drowsy and hard to breath. Bilal try to help making tea for me. Get ice for my eyes. and watch Ammar from doing some thing wrong here and there and climbing on every where. After Bilal went to bed and Ammar was not sleeping, i had to be on my feet run after my very energetic son. Kitchen was mess so i put my self together and put dishes in to the dish washer and start because first thing in the morning i need girls glasses and if they are not washed it get little problem because girls wants their glass of milk first thing in the morning. Then i just came to bed with Ammar. After he went to sleep. I stay up late till i feel better and then went to bed. Tayyaba
Saturday, July 22, 2006 6:28 PM CDT
FRIDAY woke up 6:30am having very little sleep. First make 5 bags ready for each kid with diapers and stuff for their today needs. Bilal and Ammar was going to the baby sitter. Abeerah and khansa going to school and Zahra had a surgery. Start waking girls up. Abeerah had a rough night crying with dental pains. Her canine are coming and she is very uncomfortable with that. Make Abeerah then Khansa ready. Bring them downstairs. put shoes on them and give them glass of milk. Wake Zahra up and put her in the tub to give her bath. Dress her and bring her downstairs. Now there was a big problem that she is not spouse to eat anything prior to going for surgery so i have to keep her away from the kitchen and from other girls drinking their milk. So put Zahra in and took Abeerah and Khansa out the room. Wake Bilal up send him in the bath room, Start making Ammar ready. I got dressed. Girls bus came and i put them in the bus. I was running up and down the stairs because it was 7:45am and i have to be in the hospital at 8:00am. After putting shoes on Zahra and Ammar. Took them in the van but van was full of giant wood pieces which my husband bought for me yesterday to build a shed and because of rain he left them in the van. So i carry one by one piece and bring it in the yard. Now i was freaking out because i was late. Bilal was no where to be found. Start calling him and find out he can not find his shoes. He have 5 pairs of shoes and this always a issue of can find the shoes. Look for shoes with him and find a pair next to the trampoline. Put him in the van. He was upset that i am rushing him. Wait for Zarrar and he came. I drove it to the baby sitter place. Drop angry Bilal and Ammar there. Drove to the hospital. Zarrar drop us in the front of the hospital and went to park. After doing some paper work, Zahra and i call in. Zarrar came after parking. We met the Dr Jackson and Anesthesiologist. Put gown on Zahra. Zarrar also put white overall on him because he was going in the O.R. with Zahra. After saying good by to Zahra at the O.R. door. I came and sat in the waiting room being very sad. Start saying my prayers for Zahra.
Operation took hour and half. Dr. came out and tell us every thing look great and he remove three teeth and did three fillings. I went in the recovery room. Zahra was starting to wake up. She struggle and struggle. She hitting her head back and forth on the bed. I hold her down tight. then Zarrar came and we both hold Zahra but she was not happy and very hyper. Nurse give her morphine and then give her more morphine.
After an hour of struggling, Zahra calm a little. She drink apple juice. We have to came home to pick up Abeerah and khansa. Talk to the nurse for discharging Zahra early and they did paperwork and check all Zahra's vital signs. I dressed her to go. And then we were on our way to home. Pick up Bilal and Ammar from the baby sitter. And reach right on time to receive Abeerah and Khansa from the bus. Make Zahra comfortable. She was unable to stand but she wants to walk around. So belt her in the chair. Feed her yogurt. Zarrar left for Friday prayer. I make Bilal ready and send him to the musjid. I clean up the living room and mop the floor. Zarrar came back with his friends to watch a game. I thought Bilal is watching the game with them. After hour later when i made ICE tea for the boys and call Bilal, Zarrar said he is not there. He said he did not see him at the prayer. Then i got worried. Ran to the musjid but doors were locked there. Ask around about him from neighbors but no one see him. Came back and told Zarrar. I start freaking out. Call the police. One of the boy had the Musjid keys so they all went to look for him. And Thank GOD he was in the Musjid locked in. I Thank Allah that he is safe and ok. Told the police all about it. My heart just felt stoped in whole this time. Thousands of thouths passed through my head to make me cry.
Cook and feed every one. Zahra is on soft diet so feed her pudding and yogurt. Make girls ready to bed. Zahra start crying. Give her Tylenol to help the pain. Put the girls to bed. Zarrar took Bilal to his brother's house. I clean the girls room inside out. Shampoo the carpets and clean the walls, Chairs and windows. Them clean up the kitchen. Abeerah woke up and she start crying. Give her medication. Zahra woke up too and she was very fussy. I give her Sleeping medication so she can take some good rest tonight. Zarrar came back and left Bilal at his brother's house to spend a night with his cousin. I had a very busy day so i was tired. But Ammar was no where near sleeping. I took him to bed with his toys. He play little bit then lay down and we fall a sleep and it was 3:00am
Tayyaba
Friday, July 21, 2006 2:58 AM CDT
TUESDAY.. Woke up with very bad allergies attack. After sneezing about 300 times and turning my eyes red with non stop rubbing, when i get little stable and saw the time. It was late for Abeerah and khansa's school bus. They both were sleeping tight after not having a good night so i just keep them home. Make Zahra ready who was already up and walking around. And send her to school. After dropping Bilal for his class, Came back and make Ammar ready for his therapy but her therapist canceled. Clean up here and there. Pick Bilal up from his class. Came back and Social worker was waiting for me. We go through some stuff with her. Get ready for Zahar's appointment. Receive Zahra from her bus and put her in the van and drove to Hackensack. Zahra cry all the way there. First i though that she was crying because her teeth might be bothering her but as soon as we went in the office she was happy again and then i realize that Van AC is not working and she is having a hard time with the heat. After little wait we were call in and one of the nurse took hight and weight. Dr. Tantawi came in the room and check her. sign the papers for clearance for the surgery. Coming back Zahra cry again. It was really hot. she keep going in to chocking sounds. It got really hard for me to drive so i took the van to the shop and ask them to check the Air condition. One of the guy took keys from me and start the car and close the door and doing that he lock Zahra in the van in extreme heat. Guy open it in 10 minutes of struggle but that was hardest 10 minutes for me watching Zahra cry inside. She was turn in to hot potato so i took her closer pizza store. Stand her front of air condition and give her cold Gatorade to drink. I order pizza while i was there because i know when i will reach home, kids will be really hungry and i have no time to cook. I came back to see the van and guy told me AC is broken and they can not fix it. we have to buy a new one. he put every thing back and i pick up pizza and drove home in a very hot humid van. It does not bother me because i happy to melt pound or two to get back in shape but Zahra can not take the heat. Came hame and bring Zahra in. feed every one veggie pizza. Zarrar and Bilal went to musjid and Ammar's therapist came. I clean up little. since Bilal is home, toys are spreaded every where all over the house. I am worry about girls getting choked on his small pieces of toys. 3 nice gentleman man visit us from church to meet our family and see how can they help. Zarrar came from musjid and meet them and have little talk with them but he had to leave for his football game so he get ready and left with Bilal. After people from church left, I bring the kids out in the yard. Zahra like to be out door but she do not like to be hot. She run around in the yard and cry. She jump on the trampoline crying. I water the plants. When i got done weather start getting nicer and it started to rain. I bring kids inside. One of our friend order pizza for us and deliver at our house. It was so nice saving me from cooking. Zarrar and Bilal came home. We all eat. Make kids ready to bed and take them upstairs to bed. Zahra cry again for while but when she saw Bilal and Ammar jumping on my bed, she join them and have a good time. She laugh and laugh. I did some laundry and cleaning. Put every one back to their beds. Zarrar on on vacation this week and he is in habit of staying up at night for his job so we watch some TV and i went to bed.
WEDNESDAY. After girls went to school and Bilal drooped at his class. Zarrar went for his game. Make Ammar ready for his therapy but it got canceled. Me and Ammar had a great morning. We stay in the back porch. I love the cool weather. Ammar had his therapy and i did some ironing on Zarrar's work clothes. Pick Bilal up from his class. Zarrar came home and rest of the afternoon we work on putting the Air condition together to make it fit in the window. Oh boy it was heavy. Finally we did it. it was great accomplishment. Evening we spend in the back yard. Bilal and i play some sports and race together which he win them all. Ammar and Zahra stay on the gate and want to go out but these days we have only one van. Bring every one in side. I cook dinner. Zarrar left to see his brother. After feeding kids and making them to ready for bed. Bring them up and put them to bed. Zahra cry an hour before she fall a sleep.
THURSDAY. I had a very bad morning start with my allergies. After sending girls to school, i took some Benadril and went back to bed. And that was it for me. woke up with very dizzy head and it was late for Bilal's class. Drop him off in my half sleep. Then came back and make Ammar ready for therapy. Zarrar pick Bilal up. In afternoon Zarrar cut the grass which been really growing wild. But he broke his lawnmower and he spend hours fixing it. But grass don cutting by night. Cook dinner and cook some for next day as well because i will not be able to cook due to Zahra's surgery. After feeding to every one. I fold the mountain of wash clothes and put it away. Rest of the evening did not do much and just being worry about Zahra's surgery. I hope every thing goes well tomorrow. Ameen.
Tayyaba
Sunday, July 16, 2006 3:05 PM CDT
TUESDAY Abeerah, Khnasa and Zahra went to school. Drop Bilal for his class and Ammar received his therapies at home. After girls get home from school. I make them ready for their Appaointment with Dentist. All three having a dental issues. Abeerah and Zahra been crying a lot and Khansa teeth need cleaning. Also She is drolling so much these days. Make Ammar and Bilal ready too because Zarrar had to go and pick up my accident report from central Jersey. Taking the girls inside the Dr's office was quite a struggle because there is 5 stairs in front of the office and no handicap access. well carry them in and their strollers one by one. After little wait Abeerah call in first. Dr. check Abeerah and told me that her teeth and fillings are fine but she is having her canine teeth and also molares are ready to come too. That is making her uncomfortable. Khansa turn was little faster than Abeerah. she have nice teeth but very sharp and Dr. get couple of bites on his fingers while cleaning her teeth. Zahra did not like any one putting fingers in her mouth and she start screaming. But Dr. have to do his job. And she do need a lot of work for her teeth. She have some cavities to take care. Dr. Jackson said he can not do any thing in his office whith her hyperness and constatnt moving her head so she need to go in O.R for detal work. Dr. Jackson and his staff help me bring the strollers down the stairs and help me load all the kids up in the van. That was so nice of them.
Dr. Jackon with Abeerah, Khansa and Zahra.
After coming home did all the same routine thing like feeding, making kids ready for bed and strugling to put them to sleep and cleaning after ect.
WEDNESSDAY After putting kids in to the buses. i got ready and make Bilal and Ammar ready jump in the van ad we were going to east branswick to meet the lawer. It was hour and half going and two hour of consutation and hour and half back. i had to cancel Bilal class and Ammar therapies for this. Came back just on time to receive girls from buses. Rest of the evening did not do much. Zahra cry a lot after she came home. Dr. Jackson office call and schdual Zahra's surgery on 21st of july. It rain so we all just stay inside. I did lot of laundry. After feeding kids, put them to bed but Ammar, Zahra and my self stay up till very late night.
THURSDAY. woke up with ot of pain in my shoulders so cancel Abeerah and khansa's bus becasue i was unable to carry any on down the stairs. Later Zahra woke up and came down stairs. i change her clothes and make her lunch. feed her breakfast. She left for school. Make Bilal ready and drop him for his class. Wake ammar for his therapies but both therapist canceled for today. Pick Bilal up from his class. He is very exited learning swiming and realy love it. Zahra came back from school. Rest of the afternoon we did not do much. In the evening i took every one in the back yard. I did some gardening. Bring the kids in at dark. after feeding them dinner, put every one to bed.
FRIDAY.
No one went to school today because i am having lot of pain in my shoulders and my neck cause of the accident. It feels it is getting worse. I am unable to move my neck. Bilal have no class today and Ammar have no therapies. So i just relax and took care the girls. Bring them down stairs one by one. Feed them breakfast and put Barney on for them. I just about to get up to cook food and I receive food delivery from sosme nice friend of ours so that was really nice and save me lot of work. Zarrar and Bilal went to Musjid for Jumma. I did some cleaning and some laundry. Zarrar left to work and i bring the kids out in the yard. I was in need of groceries and i need to get some stuff from sears so call Laila and Sara for baby sitting for little while. They came and i left. Came back with groceries and girls help me to unload the groceries. Later feed the kids and start making them ready to bed. After taking each one upstairs and put them to bed after brushing their teeth. Then took crae teh groceries and clean up the kitchen. Did some orgnizing with Bilal's help in the basment because water keep backing up and all the storage stuff keep messing up and mold start growing there. I am very badly allergic to it. If i don't take care of that now, then i will end up on bed soon. We both went to bed very late.
SATURDAY. Very boring hot day. Did not do much today than daily routain. Girls cry one after other with heat. Zarrar pick up the Air condition donating by Mirza's family but unfortunatly it was very big and did not fit in the window. spend evening in teh backyard and water plants while girls walk around. Abeerah just sit on the grass and try to eat some. After dinner, just watch TV with kids. put them to bed late. Ammar and Bilal play around and leave toys all over the house. when they went to bed i clean up the whoel down stairs and vacuum died on me so finsh cleaning with old fashion way using the broom. before i go on bed Abeerah woke up and start secreaming. Give her pain medication and put some Orajel on her teeth for calm her down with her teething pain. She went back to sleep in a while and i went t o bed.
Tayyaba
Tuesday, July 11, 2006 1:48 PM CDT
"SO CUTE" Came back from the Dr. and find Ammar out side waiting for me and guarding the diapers delivery.
SATURDAY.
What a great day! Woke up 8:p.m. after having just a 3 hours of sleep. Stay up late last night struggling with my printer to print some pictures for making a board for Husna for the Garage sale. Also Zarrar need my help to paint some shirts for his foot ball team members for the Game today because shirt guy left for vacation leaving their shirts at the shop and now he did not had enough shirts for the whole team. Lilli came early after long time and i was happy that she came because there was so much laundry to do even i try to do two loads a day but at this place clothes pile up really fast. Zarrar wake up and start putting things together for the game. i put some stuff together for the garage sale. Kids woke up and i give them bath one by one, dress them and bring them downstairs. Give them milk to drink. then i went with Zarrar to pick up some stuff for Bilal's lemonade stand. Came back and with some young boys help me move Boxes at the musjid where Husna already set up a nice Garage sale. I gave her the board i made about the girls. All the young girls put so much effort to arrange the whole thing. Zarrar left with all the boys were gather at our house for the game.
Suzanne came from central Jersey with kids to help at the garage sale. She watch the kids and i could went over to see what was going on. People were coming and buying stuff. I want to thank all the nice people who donated all the things. We were waiting for Bilal to set up his lemonade stand but he went with his father to watch the game and did not get back so kids help me set it up and sweet girl YASMEEN start the lemonade stand. It was hot and people were thirsty so it start doing good. Zarrar came back with his team as a winners. They were very happy. Zarrar want to do the cook out for them. Which was a last minute notice for me so i get to work. Every one eat and had a good time. I went back to the Garage sale, they started to close it.
Bilal got some books and blocks from there. He also receive his first two wheel bicycle from his Noor-ul-Iman friends with his name plate on it which makes him really exited. Jamal give him some lessons to ride the bike. He still need lot of practice. I went to pick up lemonade stuff put at the stand, board and sings when girls close every thing. Husna came over and hand me the box of earning. it was so overwhelming and on top she hand me a hug card sings by all the girls who put so much effort in to it.
It says" One million things we can say to you but it is all it comes down to With all the sisters you know and touched you became such an inspiration to each and every one of us We've just been blessed to have a sister like you And thats just all it comes down to."
It was so amazing. Reading that just bring tears in my eyes. I can not put the words together to tell how i felt so deeply in my heart. Just can say, thank you guys. You made my day. After every one left. i feed dinner first my girls and then Ammar. Me and Bilal play with the blocks and then read some books. Make kids ready to bed. Took them upstairs and put them to bed. Zarrar's friend came to see the video of the Game. I clean up the kitchen. There was lot of dishes to wash. After i went to bed.
I want to say my very special thanks for a very special girls. Thank you so much Husna for all the support you keep giving to us and for all the support you brought to us from others. I always heard that God send his ANGELS on earth to help people out from their hard times but now having you i really believe it. Thanks for always be there for us. Also i want to thank Suzzane for coming from far far away to help. I could not ask any better friend than you. Also my Thanks goes to Husna's helpers Sara, Sana, Aruba, Bushra, Amina, Sumina and Rakshan. You guys are amazing. One our very special thank for brother Ummer Shareef for always coming out and giving his sister help with a great smile in every event put out there for us. May Allah bless you all. Ameen.
SUNDAY.
Morning was as usual as always with kids. Zahra woke up very early and start walking around the house. Throwing any thing she find on table or counters. When i heard the noise, i ran downstairs and my living room was a huge mess. All the sox from the drawers thrown out by separated from the pairs. Also shoes, toys and papers. Well, put her in her room. Change her diaper and give her glass of milk to drink and put barney on for her. When she is set, i start cleaning up. Zarrar woke up and left to meet some player of his team. Rest of the kids were still sleeping so i went back to bed for little more rest. But not long after every one start getting up. Bilal was upset that i am not taking him out so i decided to take him to the park. Make kids ready. Bring them downstairs and feed them breakfast. Then start packing their diapers and stuff. Then went out and clean up the van from all the stuff Zarrar fill it up with his foot ball stuff form the game. Put wheel chairs in. Oh boy they are heavy. then start putting the kids in after putting shoes on them one by one. But before i could roll on the road, i had to change two kids diapers because it was impossible to drive with the smell. we reach to the park. Bilal, Zahra and Ammar run after the ducks. Abeerah and khansa just look around people passing by.
Then i teach Bilal how to ride bike. That was tiring. I had to bend my back and run with him. I remember teaching to my 4 younger brother and sisters and it was easy but now i don't have that much energy i guess. When every one seems tired and hungry, pack every one pack in the van and drove to Berger king. Get some fish sandwich and feed every one in the van. Then Bilal wants to go to other park to go on the swings and slides. We stop there and only Bilal went out because i have no strength left at that point. He play on swings and i stay in the van with kids watching him play. It start getting dark. I call Bilal back. After getting an ice cream from the ice cream stand we were in our way home. Came home and unload every one. Bring every one inside one by one. Ammar drop the whole glass of soda from the burger king on the floor with big splash. He was going to swim in there but luckily i grab him before he step in. Clean up the mess. Every one looks tired. Give them drinks and Then make them ready to bed. Put them to bed. Zarrar left to work and we all went to bed.
MONDAY.
woke up with my Alarm. After my needs, wake Abeerah, khansa up and make them ready for school. Bring them down stairs and feed them some breakfast. Make school bags ready with diapers and extra clothing. After both left to school. Wake Zahra up and make her ready for school. Make her lunch and school bag ready. After she left in her school bus. Zarrar went to get coffee and we both drink it together. He was tired working all night so he went to bed. I clean up the living room and vacuum the carpets. Wake Bilal up and send him to get ready. After he eat his breakfast, drop him for his class about two streets over from us. Came back and wake Ammar up. Make him ready and give him glass of milk, His therapist came and he got busy with her. I did some laundry and some paper work. After she left other therapist came. Bilal came back with his teachers because i was late to pick him up. I ran to a store very quick while girls watch Ammar and Bilal. Came back and receive khansa, Abeerah and Zahra from the buses. Zahra was upset. Her diaper was wet and she had a very bad rash on her inner side of her thigh. She cry and cry mostly rest of the day.
We stay inside all evening and trying to stay cool. Bilal and Zarrar went to Musjid. Zarrar came back and then left to work. After feeding dinner to every one, Bilal want to go to get ice cream from dairy queen. make every one ready, and put them in the van. Get some ice cream for every one. Eat and came back. Take kids to bath room and after brushing teeth and diaper changing put them to bed. But Zahra all of sudden start crying out loud. She start going up and down, running one corner of the house to to other and jumping two feet hight. I put bandage on her rash and rap her whole thigh area with tape. But she did not stop crying. I gave her hurt burn medication. After an hour she stop crying. I put her to bed. My back and neck been in lot of pain already and holding on Zahra, i got hurt more. I hardly clean up the kitchen and went to bed while Ammar play with his car on the bed beside me and i have no idea when he fall a sleep.
Tayyaba
Thursday, July 6, 2006 8:02 AM CDT
THis week been busy as always. Kids were off from schools for vacation so it was lot more to do. 4th of July went great. We had so many people over for B-B-Q. Lot of food, lots of fun and lots of work. Every one had a great time. Girls did great even i was worried about Abeerah who did not had a good couple of days with dental pains. Kids play some games out door. Weather was nice and it even rain for little while. After every one left, lots of cleaning to do. Went to bed late.
WEDNESDAY. JULY 5th. HAPPY BIRTHDAY TO ZARRAR.
Wake up late and there was not enough time to make Abeerah and Khansa ready for first day of school for summer program. so they stay home. Make Zahra ready and her lunch ready. Her bus was very late. After she left. Wake Ammar and make him ready for his therapy. HIs speech therapist get busy with him and i went back to bed after checking on girls. They were sleeping tight. Ammar had a busy day with one after other therapy. Abeerah and khansa woke up and i bring them downstairs and feed them breakfast. Then i get ready and make Ammar ready quick and left for Ammar's evaluations appointment at school. Child study team ask some questions about Ammar and tell me about the program they have. Ammar play with toys while i stay in the meeting. Came home and put some paper work together. Change some diapers and left for bank. Came back and feed every one. Clean up the back porch from yesterday party. Zarrar left with Bilal to foot ball practice. Did not do much after. Zahra start crying out loud. She run and run from one corner to other. Give her heart burn medication and she calm down in a little bit. Zarrar and Bilal came back home. Zarrar got ready and left for work. After feeding dinner, i put girls to bed but Zahra did not want to sleep and came back downstairs. Bilal just goof around and jump on bed with Ammar and Zahra which made them laugh. I clean up the kitchen and did some laundry. Then put Zahra back to bed. Give ammar and Bilal hair cut. Giving ammar hair cut was not easy. He was screaming and running and i was running after him. After hair cut, cleaning was an other problem because hair was all over the hallway and bath room and coupe of other places. Both took a bubble bath. After dressing them, I try to go to bed but did not work out with Ammar. He stay up late and play with cars on my bed. Finally we went to bed.
Saturday, July 1, 2006 6:40 AM CDT
THURSDAY. Did not had much sleep due to Ammar and Abeerah stayed up very late last night. Ammar was very cranky and with his tantrum, he bang his head in to me all night long. Hardly get some sleep after both went to bed. Woke up with pain all over my body. First i thought, Ammar's head banging is the reason of that. But later i start feeling hot. I was defiantly falling sick. Wake Ammar and make him ready for his therapy. Girls woke up. Give them bath one by one. It was hot day and fan air just felt really warm. Girls start crying because they can not take the heat. Our old air-condition were damage by the sewer water back up in the basement. But give a try, I carry one AC from the basement and plug it in but did not worked. Then call Zarrar and he bring other one but the same thing. Abeerah's face start turning red with heat and she was crying top of her voice. I felt so terrible and put fans all around her. Then i bang AC and push some buttons and pray, Please Allah make it work and Thank to HIM it did started. I was so so happy and my husband sat down being relax.
I had an appointment for Ammar with DR. Tantawi for his ammunizations up to date for school which we stop getting for him since he start showing the delays. but i had to canceled it due to not going driving.
Also we had a team meeting for Ammar's ABA therapy. All the therapist get together and they write a new program. They were talking to me and asking questions but i was totally lost. MY head started to spin. And body was in so much pain. I do not know what really happen at the meeting but i was glad when it was over. I ran and lay down on bed. But not long after i had to get up an d made food and feed the girls one by one then feed Ammar then Bilal who is giving me hard time eating any thing these days. I just got done giving lunch to Zarrar and went to check up on Ammar, But there was water falling like a fall in the living room. Ammar threw the whole toilet paper in the toilet and flushed it. Which cause the toilet clog. Zarrar start screaming and covering the equipments and was try to stop the water to over flow from the toilet. Threw all the towel on the ground to stop the water but it was like a puddle. Long story short that our half of living room was soaking wet. Clean up clean up, till i was on my last breath. But there is no break for me. Many diapers change. Cook dinner and feed. Zarrar left to work. Make kids ready to bed. All the hall way carpet was very wet. Carrying girls upstairs was very hard today when my head was not with me. After putting girls to bed. Send Bilal to sleep. I just fall on my bed and hopping to rest but Ammar......He comes angry. He do not want me close my eyes when he is up. Every time i close my eyes and BANG...Ammar hit me with his head. He bang over and over. Turn all the lights off but he still did not stop. So woke up and walk with him down stairs. Clean the kitchen which was left very messy. Give Ammar his warm glass of milk and came up stairs to bed. Finally by 3:30 am he fall a sleep and so is I. But woke up again with Abeerah's crying. Check in her. Make her straight because if she turn on her stomach then she can not get back on her back her own. Then went to bed.
FRIDAY. Bilal try to wake me up at 8:am and i was burning up and very tired. poor boy keep coming back and waking me up and i keep telling him what to do next. he wants to take a bath but all the towel from yesterday ended up in the tub which i did not get chance to move it to the basement for laundry. I give instruction to Bilal and he bring the basket and move all the wet stuff in to it. Then he wake me up again. I hardly was standing up. I clean the tub and turn the water on for him. I heard girls are up but i have no strength at all. Fall on the bed again. woke up 12:p.m.. Make myself stand. I went in to girls room and they happy to see me. They chewed every corner of their blankets. Bring them down stairs which was so difficult and going to take a fall from the stairs couple of time. It was so pain full for me that my babies have no one to take care of them. I felt i am very bad mother to them. They so dependent on me and i neglected them. I was just crying. Lately thing are very hard for me. Every thing is just falling on me. Every thing making me upset and cry. Give them milk to drink. Then made breakfast and feed them. Wake Ammar and made him ready for his therapy. Feed him breakfast. Clean up the living room before his therapist get here. His therapist came and he got busy. I start cooking some quick meal. .Bilal and Zarrar came back from the Musjid after Jumma and boy they were hungry.
Later i bring the girls in the back yard. Bilal and Ammar went in the pool and play with small floating balls which is great for Ammar's sensory issues. Khansa and Zahra walk around the yard. It start raining so I bring every one inside. Did some loads of laundry. Zahra start crying out loud. she was very very upset. She run one corner of the house to other while crying out loud. I could not find her pain medication. I looked and look every where. That is a mistry that medication disappear from the cabinet. Give her Tylenol instead. After Zarrar left to work. i feed the kids and make them ready to bed. Bring them upstairs one by one. Abeerah was very hyper and did not sit still. Then she start crying. I do not know what is bothering her. Just play the guessing game. Felt like she is in pain but I had lost the pain medication and do not know what to do to make her stop crying. Give her Tylenol too. Which made her calm down in an hour and half.
I was burning hot again. My both ears and throat hurt. Took medication for fever. After cleaning up the kitchen i just felt i am on the edge of every thing. With the accident thing turn things harder for me. My back is in pain. Since i am not driving, i am out of every thing in the house and taking the kids to the Drs. an other issue, How i am going to do that. i feel so helpless. I feel very weak and feel pain all over me. My eyes just keep having a water fall. Usually when things get harder here, i think of that famous saying "GOD only put that much on you that much you can handle" and that makes me think "HE must think i can do this that is why this happen to me." which always gives me strength of handling it. But today i just feel like i have lot more than i can handle. I sat on the chair and I pray to Allah to help me and give me strength to go on. Then I saw a mail on the table. There was a Courage magazine there when i pick that up to look and i saw my girls pictures on the front page. They looks so beautiful. That really made me smile. I was so happy to see that. Allah have his ways to give me smile. I thank GOD for every thing.
Then came to bed. But Abeerah was crying out loud. Ammar stay up Even i try again giving him Benadril earlier today but did not helped. I stay on and off my bed trying to sleep and getting up to check on Abeerah. Then i gave her her heart burn medication. Finally Ammar fall a sleep and Abeerah also Calm down. I see the morning light and i did make my morning prayer and went to bed saying what a day.
Tayyaba
Wednesday, June 28, 2006 6:14 PM CDT
First i want to thank every one for all your prayers. Its been very difficult last couple of days for me. My Accident really shock me up. Because of accident happen one and half hour drive from here, And getting our car, meeting with lawyer and picking the police report is a long drive which we had to make a couple of trips down there. And it will be many in future since i am pleading not guilty. My back and neck is still in lot of pain. Which make house hold work and taking care the kids little difficult. Kids are having a summer vacation. Bilal is bored already. I have so many plans to take kids to parks and places during vacation time but now putting my slef behind the wheel, scared me to death. I hope i over come to my fear of driving because i have many many Drs. and school appointments coming next week.
MONDAY. (JUNE 26th) After sending Abeerah, Khansa to school, Wake Ammar up to make him ready for his therapy. Bilal and Zahra woke up and after taking care of their needs and breakfast. I call the baby sitter to watch kids for few hours. Zarrar and me went to Central jersey. Pay for the towing and storing our car for two days. Call the Auto body shop to take our car from there. Went to actual scene of the accident and took some pictures. Then went to the police station to pick up police report but it was not ready yet. It was getting late for the girls who was doing the baby sitting so call Lilli so she can take over the baby sitting but i could not reach her. Call other friend and ask her if she can find Lilli. My Poor friend could not reach her either so she actually went to her house and pick her up to my house. When i find out that Lilli is there, i was relaxed. Then we drove to the Auto body shop to see our car but car was not there yet. We waited and we waited. Then we give up and drove back home. Stop to eat one place because both were hungry, tired and stress out. Zarrar went to work after dropping me off. Send Lilli home and feed every one pizza. Clean up little and start putting kids to bed. Zahra cry for hour and Ammar did not want to go to bed. Both stay up till 2:am.
TUESDAY.(JUNE 27th) Due to my back and neck pains, Could not make girls ready for school on their last day of school. Call the bus driver to tell no pick up. Check on kids and went back to bed. Not long after heard dishes dropping in the kitchen, It was Zahra who woke up. So give her glass of milk to drink and put Barney on for her. Wake Ammar and make him ready for his therapy. Rest of the day did not do much different than usual. Took every one in the yard and most of the day stay in the back yard. Zahra cry and cry. i think she having a heart burn because she cry every time she eat. Need to make an appointment with Dr. Zarrar woke up and left to work.
Cook dinner, and also bake chocolate cake for Bilal. After feeding kids, Start putting kids to bed. Bilal and i work on one project for his show and tell on sunday and then send him to bed. Ammar stay up late and keep banging his head in me to keep me up. Went to sleep very late.
We are in need of your prayers for our strength.
Please stop and sign our girls guest book to let us know you stop by. It means so much to us.
Due to things got very busy here than ever before with children, some times can not update regularly but please keep checking back often for more updates on beg girls.
Tayyaba Beg.
Sunday, June 25, 2006 1:09 AM CDT
Today my family was invited by 8 grade students of Noor-ul_Iman school for their graduation ceremony. But unfortunatly before entering the school got in to an accident. Thank Allah that kids are ok. Car got badly damaged and towed away. My back got hurt which i did not felt real bad then but now its all hurting till my neck. Girls looks tired and fall a sleep. I hope thery feel ok tomorrow. I will write more in details later. I am dealing with a huge trauma right now.
By the way..Graduation was so beautiful. Love all the speeches. CONGRATULATIONS to all students. And Good Luck in future.
Tayyaba Beg
Wednesday, June 21, 2006 4:58 PM CDT
This whole week went by very very busy. So many appoitments to deal with. All three girls and Ammar having a lot of ups and downs. Girls are crying on and off. After taking medications, they are ok for few hours and then they turn back to crying. Abeerah having a dental pain and khansa's back in pain but with Zahra, still can not figure out what is bothering her. Ammar having a lot of tantrum problem these days. . All the improvements we see in last months feels like lost this week. He also not sleeping at night. He is staying up all night long and the head he use to bang on the floor out of frustration but now he using on my whole body specially on my ribs. My whole body is full of browses. Last three days i did not get to sleep at all and that is just killing me. I feel just lost here. All the emotions just getting me.
MONDAY. (JUNE 19th) After waking up and taking care my self, wake Bilal and he was upset for not having enough sleep, He do not want to go to school but i talk to him about just a week left and he should not miss his class last days. He start getting ready and i wake Zahra up and dress her. Bring her down stairs. Make lunch ready for Bilal and Zahra and give them milk to drink. Zahra's bus came and i put her in the bus but Bilal miss his bus due to could not f ind his book. He was very Cranky so Zarrar send him in his room to get some rest. I did little more up and down stairs running to make Abeerah and Khansa ready for school. After both of them left to school, I clean up. Wake Ammar up and make him ready for his therapy. Zarrar start playing with him. And in that time we missed his therapy due to the fans were on, we could not hear the door bell and poor therapist left. later other ABA therapist came and he get busy with her. Zarrar took Bilal out to get some thing and i get ready to go to ABEERAH'S school Award ceremony. It was nice presentation. Abeerah receive award in speech. it was nice to meet every one there.
Came home and receive Zhara from the bus. Then Abeerah and khansa came home from school. Khansa came home crying. She also got hurt on her knee last week so her back and knee are in pain. I am giving her pain killer for that. But they are only good for couple of hours. Then Zahra and Abeerah start crying. It was very hot day and we do not have AC. i felt their bodies so hot when i was changing diapers. I put two fans on but they were throwing hot air so i took them out and put three girls in the pool. Zahra get upset but Abeerah and Khansa love it they sat in the water for while. then i bring them in with their wet clothes on. With fan air and wet clothing, they did feel better. Hope fully we buy a air condition for them soon.
In the evening i took them out in the yard. Girls walk around and i work on my flowers beds. Some of the flowers start coming out and i see some butter flies are started to come. Khansa love butterflies and she get really happy to see them. She use to chase after them.
I bring every one inside and feed them dinner which i cook earlier. After dinner, Bilal start reminding me my promise for going to Dairy queen for ice cream. I was so tired but promise is promise which i don't even remember making it but make the kids ready. put shoes on them and took one by one in the van. Bilal helped me getting their things together. When i start the van, there was no gas so start looking for gas station at 10.00am finally find one. get gas. Then drive more to find ATM to get some cash. Then drove to ice cream place. Get ice cream and start feeding them in the van when Bilal have to go to the bath room so drove fast home. Bring every one inside one by one but what, whole ice cream was melted. So after brushing there teeth and diaper changing every one went to bed. I clean up the kitchen. write some bills and went to bed. I hardly had an hour sleep when Ammar woke up and start banging things to my head. I try to put him back to sleep but he was quite awake. I gave him some toys next to bed so he play and i get some rest. But every 10 minutes i woke up with Ammar's head or toy banging in to me. That goes on all night long till i see the morning.
TUESDAY. (JUNE 20th) I had a very restless sleep and i just want to sleep all day but that is not such a thing here. Woke up and make kids ready for school. After every one left in there buses. I woke Ammar up and make him ready because he have a speech therapy early today. He was tired and keep falling here and there. After giving him glass of milk, i went to get dress and ran out the door for Ammar's appointment to register him for school next year. I was the first one there so they took me in and get done in 20 minutes. Oh boy, it was fast. After registering, i went to school to drop the application for intake interview. Talk to couple of teachers and came home. Ammar was playing with his therapist (Ester)but she told me it looks like Ammar is going lower and lower in speech. After speech, ABA therapist came(Pam). And social worker came. We fill some applications out. After every one left, I put Ammar in the car but had to get back inside to change his diaper. then Start the car and find the empty tank so stop for gas. When i reach at school. I was late for Khansa's award ceremony. She got a pin for best in education. Hurry.
kids perform song in sign language "STAY BESIDE ME", made very one cry.
Went to see Abeerah in her class and she was crying. Came home and Zahra's bus was out side of my house. receive her and she was crying. Bus driver told me she cry all the way home. After Khansa and Abeerah came home from school. rest of the day we did not do much. Bilal and Ammar stay in the cute little pool we have. Khansa just walk around the yard. And Zahra cry and cry while jumping in the trampoline.
After dinner, put every one to bed.
Ammar stay up till 2-am and then fall a sleep. Finally after three nights of no proper sleep, i was going to sleep.
Tayyaba
Thursday, June 15, 2006 3:20 AM CDT
This week been really stressed out. Khansa cry all week long. And from Friday, Zahra and Abeerah started. weekend was very busy here. All three girls did not feel too good and they took crying out loud turns one after other and some time all three together. Ammar also had a fever. Saturday we had a visit from our nice 8 grader friends from central Jersey. And i get to have two hour break. Sunday, i did not feel good at all but still had a very busy day. Monday, girls stayed home due to not doing good. All therapies canceled for Ammar due to his fever. Tuesday did a lot of running around to register Ammar for school. Went to see Dr. Tantawi. Pick up some medical papers for Ammar. Khansa came home crying. Abeerah and Khansa had a field day at their school and they are the winner.
WEDNESDAY.(JUNE 14th) Beautiful day today. Girls slept good at night. Ammar had a fever last night again. After making girls ready. I bring them down stairs. when i went in the kitchen to make breakfast and lunch, There was a little tiny box sitting on the counter. That was a surprise from Zarrar for my birthday. Yes today was my birthday.
No time to open it because i was running late and buses was coming. After giving lunch box to Bilal and send him out the door with Zarrar. Zahra bus came and I put her in the bus. Bilal came back because he miss his bus. After putting Abeerah and khansa in the bus. I ran in to open the present. But what, it was my old ring. Now i was not happy. What kind of jock is that. Went to find Zarrar and before i open my mouth, Bilal hand me another cute box. and there was so beautiful pearl ring which is my birth stone. It was great surprise i ever had. I was amazed that my husband remembered my birthday this year. Then i find out that Bilal been reminding him whole week long. Bilal made me a nice card. I get dressed and drop Bilal off to school. Clean up the house. Then wake Ammar up for his therapy but her was feeling hot. His therapist came and she felt him and she do not want to bother him in fever so she left. I took him back to bed. Zarrar went to his friend's house to help him with the yard work. Me and Ammar slept till afternoon. Wake up and went to get Bilal. Then girls came home from school. It was nice out so girls stay in the yard.
Khansa walk around in the yard for little while then she start crying in pain so i bring them inside. Give Khansa medication. Bilal want to make a cake for my birthday but we decided to go buy one but that did not took place either. I cook dinner and feed every one. Did some laundry. After putting every one to bed. I spend some time fixing our Vacuum cleaner which is not working and it is not good at all in my house without the vacuum cleaner which needed here several times a day. I was able to make it work. Vacuum and then shampoo the living room and girls play room. Abeerah woke up. After changing her, I went to bed. Ammar slept during the day quite bit so he did not want to sleep and he stay up and play around.
Thursday, June 8, 2006 6:29 PM CDT
TUESDAY.(June 6th) Zarrar woke me up when he came home from work. He brought coffee for me so we had coffee together and watch the his foot ball game that took place on Saturday. He wants to show me some great tackles and touchdowns. I had to leave in middle to make kids ready for school. Khansa slept good but when i woke her up, she was not happy. Make Abeerah, Khansa, Zahra and Bilal ready. Zarrar took Bilal to drop on the bus stop and i put girls on the bus. After sending every one to school, I clean up the house. Zarrar went to bed and i woke Ammar and make him ready for his therapy. Give him little breakfast to eat before his therapist get here. But she did not came. My social worker came and i had hour with her. we fill some application up. After she left, Ammar look tired and so did i so we both took an hour and half nap. Woke up and look at the time, I was late for the IEP meeting. Got dresses and make Dressed. Abeerah and Khansa school is About 35-40 minutes drive from us. Reach there 5 minutes late and rushing my self when i saw girls case worker just pulled in so i feel better that i am not the only one late. meeting start shortly. It was nice to meet Monica(Abeerah's teacher and all the other therapists. We talk about goals and objectives. Set some new goals and then it was Khansa's turn. Teacher and therapist change and i get to meet Miss Maria(khansa's teacher) and other therapists. After the meeting i visit Khansa's class room. Khansa was not happy. Miss Najla(khansa's one on one) told me that she been very upset all day and cry time to time. After i met Abeerah's one on one. It was time to put them in the bus so i want to fly home to make it before girls reach home. Came home safe, Bilal was already home. I receive Zahra and then Abeerah and Khansa came home. Khansa was very fussy. Bus driver said she was crying all the way home. After making them comfortable, i gave them juice to drink. Ammar was very cranky and he look sick. I gave him medication and took him to bed and try to put him to sleep. woke up with bell ring(i don't know when i fall a sleep putting Ammar to bed). Zahra was crying out loud and khansa too. While changing diapers, i felt a new bump on khansa's back next to her tail bone. That freak me out. she do not let me touch her tail bone. She was crying and crying. Give her Codeine for pain. Give Zahra also pain medication even not knowing where is the pain is. I feed every one left overs for dinner. Then message lightly on Khansa's back a soothing lotion. She fuss for while and then calm down and fall a sleep.
8 months to 8 years of KHANSA with MPS.
Zahra was just freaking out. She goes up and down the stairs for 10 time. I try to hold her but she do not sit still at all. Poor Abeerah was so nicely watching every thing and did not make a peep sound. She been doing so good for couple of days. I thank God fro that.
After reading a book, Bilal fall a sleep on bed. And after getting tired of walking many miles up and down and around the house, Zahra fall a sleep next to Bilal on the sofa. I watch TV for little bit when every one was sleeping. But it did not stay for too long. Ammar woke up and i feed him Dinner. Then Khansa and Abeerah woke up. I took them upstairs and put them to bed. Khansa fall back to sleep but Abeerah stay up all night. She just stay in bed and being a good girl. After staying up and playing with me till 3:am, Ammar went to bed and so I.
WEDNESDAY.(June 7th) woke up but i was so tired that could not able to stand. Wake Bilal up and send him to get ready. I have to keep Khansa home to take her for X ray of her back. Zahra had a very bad rash due to having a diarrhea. Abeerah went to sleep early morning so i let her sleep since she was up all night long. Bilal miss his bus. It was raining so heavy. We wait for while to rain stop but it did not. I drop him at school. Came home and take care of Zahra. Then wake Ammar up to make him ready for his therapy. Zahra cry and being very upset. Therapist call and cancel due to not feeling good. Abeerah woke up and i take care of her. Khansa woke up and she was happy. She walk around and did not cry at all. I was amazed that Codeine and message took care the problem. I call the Dr. in case and left message for her. Ammar Ot therapist came. At 2:p.m. I was having a meeting for Ammar's IEP at home. We had a meeting about hour and half. Zarrar wake up and went to pick up Bilal from the bus stop while i was in middle of meeting. After every one left, I feed the kids. Zarrar left with Bilal to the Musjid for their class. Dr. Tantawi call and i talk to her about Khansa. She said, For safe side i can go get the x ray done but they can not do any thing about it. She probably bruised it. she need to be on pain medication to help her and keep her sitting on only soft cushion. It will heal it self and it will take time. Zarrar came back from Musjid and after dinner, he left for work. Zhara cry. Her diarrhea was better. For rash, I keep changing her diapers and each time keep putting cream on it. After feeding them Dinner, I went to take shower fast while Bilal watch every one. He is a sweet boy and did good job. Make kids ready to bed. Khansa was very upset when i take her upstairs. She is not liking any touching and holding her. I am scarred to touch her because she seems very fragile specially since she is in a lot of pain these days.
After putting girls to bed. Clean Bilal's bed room with him. Then we lay down and read a book. Bilal and Ammar fall a sleep and i went downstairs and clean up the kitchen. Did some paper work. Went to bed but could not sleep because my feet felt burning up so much. As long i stay on my feet, i am fine but when i put them off the ground, they start burning and i am so uncomfortable because of that. I got to stop eating sweets. Need prayers for me.
Tayyaba beg
Tuesday, June 6, 2006 2:55 AM CDT
SATURDAY Khansa and Zahra did not had good day. Khansa been crying a lot. Specially when she stand or walk. Her joints are in pain and they lock up when she sit for while at same position. She do not look comfortable all day. I gave her pain medications but it seems only help her for little while. She really taking her time in trying to stand up.
Abeerah was very happy and calm all day. Her beautiful big bright eyes followed me every where i go. She looks so cute sitting in her chair looking every one around her. I hardly gets moments like that with her so i was really happy to see her like that.
Zahra cry time to time. She loves to be out door and run around but heavy rain kept us all in. By evening she start crying really loud so me and Zarrar took her out side to jump on the trampoline even it was so wet outside and slight raining. She just was not happy. Zarrar went to get her medication and i try to run in the rain with her. She love that.
Bilal and Ammar play inside throwing stuff animals from the stairs and just be happy about it. Then Ammar get in to Bilal's Appale to Apple game card and he spread them all over the house witch made Bilal so made and he end up locking himself in his room. Off course he pick all the cards.
Zarrar left the house early today for their foot ball match which his team been really waiting for. It was pouring rain all day and these people unbelievably played in heavy rain. Long story short his team won and then came back home very happy. zarrar did BBQ and cook outside for whole team(about 27 peoples) and off course i did prepared every thing for them in very very short notice. Here is a link to see Some clips of the game I am glad they won and it is over now. Zarrar put so much effort in this game to put a team together.
After girls went to bed and rain stop, My uncle took me and Bilal for walk and left Ammar with Zarrar. We walk and walk about one and half mile. With thirst and hunger, we end up in englewood Halal fry chicken store. We had a great dinner and walk an other mile and half back home. It was fun. Bilal loved it so much that he wants to go back every day. I wish i can walk every day which i need it to loss some weight.
When we came back, Zarrar already put Ammar to sleep. Bilal went to bed and me, Zarrar and my uncle chit chat and stayed up late.
SUNDAY. Woke up little late when Bilal wake me up. Zahra was already up. Bilal took her downstairs and put cartoon on and watch it with her...what a good brother. I bring Khansa and Abeerah downstairs after dressing them and making their hair. Zarrar left with Qasim(his nephew) to get a turkey(which they Zabiha them self). After feeding kids breakfast, i start cooking. My uncle ask me to cook a special my mom recipe. I did not had every ingredient so i went to the closer market while my uncle watch the kids. When i return, Qasim and zarrar was Back and they start working on to deep fry the whole turkey. So kitchen was busy. I did some help telling them where is every thing. My all in-laws came. Qasim and Zarrar made the turkey. Qasim made the potatoes and i cook mix vegetables, back biscuits and bake yummy brownies. We all had a great dinner. Ammar ,Zahra and Bilal had a great time playing with their cousins. Khansa was not happy and keep chewing on her fingers and cry time to time. I feed her but she keep crying and keep throwing the food out with her toungh. After every one left. I start cleaning up fast because i want to visit the masjid where was a gathering held for prayer for some family member passed away. I wash dishes and clean and put the left over food away. Make girls ready to bed. Take them upstairs and put them to bed. Abeerah was very hyper so i kept her down stairs. i got dressed and went to the musjid. My uncle stayed home to watch abeerah and keep an eye on sleepy ones. program was already over so i just meet families and came home. Take care Abeerah and put her to bed. When i was ready to go to bed, Ammar came down and he want to eat. So after feeding him and washing rest of the pots and pans, we watch TV. When Ammar got tired, we went to bed.
MONDAY Woke up late due to broken alarm clock. Ran to put the garbage out and put stickers on them. Right then Garbage truck came. Move really fast to make kids ready for school. Bilal had to go to the bathroom so he missed his bus. Make Zahra ready and her lunch box ready. Wake Khansa up and start making her ready but she do not like to walk and she start crying the moment i stand her so i have to carry her around. Give both of them glass of milk to drink. Khansa bus came. Zarrar came and help carrying her to the bus. Zahra bus did not came so she stayed home. Make Bilal ready and drop him to school. Zahra went with us so coming back we stop at the donuts shop to buy some donuts which Zahra love it. She was so happy and walk with me and stand with me in the line whole time. It so cute when she try to talk to an old lady standing in front of us. Came home and wake Ammar for his therapy. Take care Abeerah. she looks tired and she stay laying down most of the day. Zarrar went to fix his phone which got wet in rain. I cook lunch. After eating lunch. My uncle went to get ready. Bilal came home from school. Then Khansa came home. We all said good by to Uncle. He stayed ten days with us and we had a great time. Zarrar went to drop him at airport. i took kids out in the yard to play. But Khansa cry due to not being able carry her weight on her legs and keep try to sit down on grass. Zahra start crying too as soon as it start getting dark. So i bring every one inside and feed every one. Make them ready to bed. Bring them upstairs one by one which really kills my back. Then i give Bilal hair cut. After he took long shower. We fix his room which my uncle was using it for last 10 days. He went to bed and i clean up the kitchen. try to put Ammar on potty for long time but still did not goes. I am trying. If one child is out of diapers form four of them. MY life will be little easier. Change my bed and Put Ammar to bed.
Tayyaba Beg
Saturday, June 3, 2006 2:52 AM CDT
Last two days...went by really upsetting and heart breaking. I hate MPS so much for taking over on my little girls.
THURSDAY. Have no sleep at night due to Ammar was sick and he was very cranky. Abeerah and Zahra also did not sleep and i keep checking on them time to time. Zarrar came home from work and we both gather all the garbage due to memorial day on Monday our garbage did not picked up and it really piled up and start smelling bad so we want to make sure it goes today. Zarrar put stickers on each bag(we have to place a dollar sticker on each bag to picked up). Wake BIlal up and he jump in the shower. I went to wake Abeerah, Khansa and Zahra. Zahra was burning up hot and so is Abeerah and khans so i let them stay in bed. Abeerah and Zahra fall a sleep after staying up all night. I just make Bilal ready and send him downstairs. Zarrar make his breakfast and lunch ready, i was tired so i went to bed. Zarrar took BIlal to the bus stop. Wake up 10:00am and wake Ammar for his ABA therapy. He got busy with his therapist and i take care Zahra and take care of her and dress her, Bring her down stairs and give her glass of milk. Then bring Khans and Abeerah down stairs. After feeding them breakfast and giving them medication, I put some vegetable plants in the ground witch was dying in the starter kit while Ammar play in the dirt. It was really hot. i cam inside and all three girls was felt hot and all three start crying. i try to calm one when other two cry around me. It was so upsetting for me and i don't know what to do to help them. They were feeling hot and even Tylenol did not bring the fever down. Then finally i put the thread together and understood the situation. It was a hot and humid day and i know because of MPS my daughters can not take the heat. Their body can not sweat and get warm. which makes them uncomfortable and girls can not take that and cry. I bring big huge fan from the basement because our AC got distorted in the basement damage by sewerage back up in the basement. Fan did helped and all three calm down. Their body came back to normal temperature. I was happy to see that. Pick Bilal up from the bus stop. Feed every one. Zarrar took my uncle out and i send Bilal to the Musjid. Cook Dinner. Later i was watching girls and Khansa try to stand up after sitting for while. She could not keep her balance on her legs and fall backward and hit her bottom on the floor hard. I try to catch her but i was late. She cry and cry and cry so much. Zarrar carry her around for while and then i try to calm her down. Her every tear hurt me deep. I wish i was faster and i could save her from falling. My poor sweet Khansa. After dinner, Zarrar left for work. help Bilal with homework. Then i make kids ready for bed. And took them upstairs, put them to bed. Khansa cry little and then fall a sleep. Weather got better after lot of raining. All 5 kids was sleeping MIRACLE Hah!!!. I clean up the kitchen. Have a some time with my uncle. Since he came to visit me i did not get chance to talk to him. Went to bed late.
FRIDAY. Wake up 6-am and make kids ready for school. When Khansa's turn came and i made her stand to brush her teeth, she start crying out loud. It was hard to watch her. She did not want to eat or drink. Bilal find out, he left all his shoes out next to trampoline in rain. I dry his shoes with hair dryer fast. Zarrar drop Bilal on his stop. I put Zahra on the bus and then Abeerah and khansa's bus came. Khansa was crying when her bus drove away and it just give a pain in my heart.
After breakfast Zarrar went to bed and i went to take a rest too. Wake up 11:am when Ammar wake me up. Take care of him. It was raining so much. I call the school to see how Khansa doing. Nurse told me that she been crying all day in school. She do not want to stand or walk. I told her she fell and ask her if she can check if she fracture any bone. she check on her. Nurse told me that it do not looks like that she break any bone but she do not want her to touch her tail bone. Zarrar went for Jumma. Qasim(Zarrar's nephew) Came over from MA. and i feed breakfast to him. Went to get Bilal from bus stop. Zahra came home and them Abeerah and Khansa came from school. Khansa did not want to walk so i carry her inside and gave her pain medication. Order some food. After eating, Zarrar went to the wedding, were we were invited was going to get ready when My sister in law came over with Humza and Liela. they play Game "APPAL SNAPLE' and they had a lot of fun. Zahra start crying. Ammar therapist came and he got busy with her. My sister in law took Bilal with her to my other in laws house. Then Abeerah and Khansa start crying with Zahra. I took Zahra in to back porch and she enjoy watching the rain falling. Feed every one dinner. Make them ready to bed. Put the girls to bed. Wrap the gift, get ready and make Ammar ready but before i put new diaper on, he went pee pee and destroyed his clothes so after changing i left him with my uncle. When i reach there, wedding was over. People were leaving. Meet the Bride who was leaving, Meet the family and came back home. Ammar stay up late and keep me up with him.
Tayyaba Beg
Wednesday, May 31, 2006 1:20 AM CDT
Sorry for no update for while. Its been really busy busy week here with Drs. appointment, School meetings, Field trips, gusts and long weekend.
Zahra's IEP meeting went well. School requested one on one person for her to keep her in the school for next year since she need constant care and supervision. We are waiting to hear from district to approve and hire a person for Zhara.
Our special THANKS goes to Noor- ul -Iman school kids for giving us all the help on Saturday so me and Zarrar was able to attend Zarrar's friend's (Abdul Malik) wedding. You guys did a great job taking care of our children while we were gone. Thanks to you we had a great time.
MONDAY. Abeerah woke up early and start crying out loud. She cry all day long. Pain killers or sleeping pills did not helped her. I took her in the back yard so she can watch every one playing out. Kids stay in the back yard for most of the day . My uncle and my cousin was over so we did BBQ. Bilal had a great time with my cousin Afifa. She left by 9:pm after staying whole long weekend with us. I make kids ready to bed. Ammar catch a fever. Abeerah did not sleep and cry time to time.
TUESDAY. Since Ammar was sick and very cranky all night long and Abeerah did not sleep all night, I was very tired in the morning. MAke kids ready fro school. After Bilal, Abeerah and khansa left to school. Zahra bus did not came to pick her up. I call the bus company and they told me that school is close to day which i did not get any notice for it from school. She stayed home and watch TV. Ammar woke up and he was very upset. after drinking his glass of milk, He went back to sleep. His ABA therapist came but i have to cancel it due to he was not feeling good. Did not do much all day. Cook dinner. My sister in law came visit. Bilal, Abeerah and khansa came home from school. Girls looks really tired and they lay down. Abeerah was very quite. Zarrar took Bilal for his class. I clean up the house. Zahra start crying. She was very tired. I try to put her sleep so she take some rest but she did not sleep and stay very fussy. Zarrar came back and get ready then left for work. We all ate Dinner. Kids stay in the back yard and i water all the plants. My uncle also stay in the back yard and play with kids. When it turns dark, we came inside. After feeding them, Took them upstairs and make them ready to bed. After putting kids to bed, i clean up the kitchen and did some loads of laundry. Ammar stay up and he was not feeling good. After putting Ammar to sleep, I went to bed.
Tayyaba beg
Monday, May 22, 2006 2:10 AM CDT
Last week passed very emotionally stressfull for me. Too much to deal with. Each one of them decided to keep me on my toes. There was a lot of crying here. Sleeping issues with Abeerah, Zahra and Ammar. Laughing out loud for hours and sudden turn in to crying with tears going on with Khansa. Bilal have not liking his school and not doing homework problems. So lot to deal with when my both shoulders been hurting a lot and Allergies are really taking over on me.
SATURDAY. Stay in bed little late. I need it that after a very busy week. Woke up and check on kids. Every one was still sleeping. Zarrar is a morning guy and he was not home. After my morning coffee, Kids start getting up. Bring Zahra and Khansa down stairs. Give them milk to drink in their sippy cups. Give Abeerah a haircut and give her bath. After dressing her, bring her down stairs and give her glass of milk to drink. Then took Zahra back up and give her bath, dress her and make her hair. Take her back down and put Barney on for her. Took Khansa up for her bath. Then Bilal took bath while i feed girls breakfast. Zarrar came back after doing some cycling and some exercise for getting ready for foot ball game. Ammar woke up and i made him ready after giving him bath. Feed him breakfast. Zarrar put the strollers in the van and i start putting shoes on kids to ready to go. We were invited to a MPS conference which was held at Bronx Zoo. Dr. Greg Pastores was coming to present “An Overview of MPS/ML Disorders”. Also some specialists and genetic counselors were coming to answer the questions.
we were not going till Friday night because we find out about this event, kind of late and Zarrar already put a foot ball practice together with 30 peoples. But finally i was able to convinced him to go to the meeting for little while.
Put every one in the van and we drove to NY. It took us about 40 minutes to reach there. We find a great parking spot thanks to john Murray who put this event together. John and his wife came out to get us from the parking lot and push girls strollers with us. It was nice to meet Isabel again. Her daughter is 16 and have MPS III-A. Then we met Dr. Marion and his wife. Some other MPS families. Food was served there. I feed every one. It was very nice arrangement. Dr. Greg Pastores give the presentation and talk about Enzyme replacement treatment. After some question and answers, he finish and we parents talk to each other. Dr. Pastores also join us. Zarrar took Bilal to see some animals because he was getting upset. When they get back, Zarrar was rushing to get back because his phone was keep ringing. we say good by to every one and get back to the van. We had a great time.
There was lot of traffic coming back. Zarrar drop us home and left for his foot ball practice to get ready for big game. people was waiting for him at the park. Bilal also went with him. I bring every one inside and make every one comfortable. Ammar fall a sleep. Zahra cry so i took her out in the back yard for little while. Later cook dinner. Bilal came with Qasim and they both play video games. Order some food to deliver. I feed girls and start making them ready to bed. while i put girls to bed, Boys eat food. Zahra cry for half and hour before falling a sleep. Clean up the kitchen. We watch old old Japanese movie which Zarrar want to show me for long time but he fall a sleep right at the start. Bilal and Qasim watch it with me. Make bed fro Qasim. Boys went to sleep and i went to bed after checking on girls.
SUNDAY. woke up very early with Abeerah's loud sound. Check on her, she was very very hyper and unmanaged able. She was jumping all over her bed room. she was loud which wake every one up. I change diapers and try to put her back to bed but she did not even sitting still for one moment. Bring her down stairs. Then bring Khansa and Zhara down stairs and give them milk to drink. Abeerah keep pulling and pinching other girls so belt her on her chair. Put Barney on for them. After every one woke up, i made breakfast. Zarrar work in the yard to get ready to cut grass. After feeding breakfast every one, I clean up the house. Abeerah was very hyper and jumping all over the room. I gave her medication to calm her down. Zarrar's family came for class. Class was hour long. After i made tea and some other things to go with it. After eating kids play in the yard and every one talk and enjoy the nice weather. After every one left. I bring kids inside. Feed dinner and make them ready to go to sleep. Bring them up stairs and put them to bed. Zarrar left for work. After cleaning up the kitchen i get ready to bed. Ammar stay up so i work on the computer. Answer some e mails and then went to bed.
Tayyaba Beg
Tuesday, May 16, 2006 2:27 AM CDT
MONDAY Abeerah cry middle of the night couple of times . I check on her and put her back to sleep. I had a very busy weekend and i was very tired with all the running around then could not sleep well at night. Which ends up waking up late when there was not enough time to make kids ready so no one go to school today. Ammar had therapies so wake him up but his therapist canceled. It was raining out side all morning. Kids stay sleeping little late. Wake up and bring them down stairs. Feed breakfast. Did not do much all day just stay home indoors due to rain. Ammar stay busy with his therapies. Cook dinner. Abeerah was crying since morning. Her teeth coming out and bothering her. Zarrar took Bilal for his class and when they return, Zarrar left for work. Ammar went out to play in the yard and came back covered in mud head to toe. Give him bath. Abeerah was crying a lot. I keep giving her pain medication but she was not happy all day today. After i help Bilal did his Homework. took every one upstairs and put them to bed. Clean up the kitchen. When i came back Abeerah was crying a lot. She wake Zahra up too and both stay up late. Zahra went back to sleep by 3:am but Abeerah stay up and keep making noises with some crying in the middle.
SUNDAY Wake up very tired and wake Bilal up. He said happy Mother's day to me. Then he ran down stairs and tell me not to move. He came back with cup of tea that he made and with her present he made at school and hiding that from me. It was so nice of him. He made a nice card fro me and bath room tile with his hand writing of Mother's day and all the animal i like was drawn on it. After i Finnish my tea, I wake kids up. Bring them down stairs. Elaine came to drop Bilal's toy that need to be blown up with air. Zarrar work on it and put air in that so Bilal can play with Ammar in that. He put it in the living room. I feed girls breakfast. Then feed Bilal and Ammar. Bilal wash the dishes for me for mother's day. He said he wants to do all my work today. How sweet of him. May Allah protect him from every bad thing. Ameen.
Zarrar left to get fruits. There was a prayer get together for my mother in law. Every one was bringing a one dish. Fruit salad was our dish. I help Zarrar to cut fruits in very small pieces. He left with the fruit salad and Bilal. Could not find any baby sitter due to Mother's day and i want my kids to stay with their mother too so i I made Ammar, Abeerah, khansa and Zahra ready to take them with me. Took every one in the van. Zarrar help me taking the kids out of the van and i put them in the chairs. Qasim(nephew) help taking every one shoes off. Whole family was there. We all pray for the MOTHER. After prayer, we all eat. Girls start getting fussy so after Dinner i start making them ready and took each one of them in the van one by one. Came home and unload them, carry them inside. They all look tired so i make them ready for bed. And took each one upstairs. Girls were tired and they fall a sleep quick. Bilal and Ammar went to bed too. I left my house in very dirty condition so i need to clean up the kitchen. There was all the fruits all over the place. After cleaning little bit, i was ready to fall due to i did so much carrying the girls all day. So i left every thing in the middle and went to bed. It was a nice mother's day.
I hope every one had a great Mother's day.
"A man asked the Prophet: 'Whom should I honor most?' The Prophet replied: 'Your mother'. 'And who comes next?' asked the man. The Prophet replied: 'Your mother'. 'And who comes next?' asked the man. The Prophet replied: 'Your mother!'. 'And who comes next?' asked the man. The Prophet replied: 'Your father'" (Bukhari and Muslim).
God says: Not only you pray for your parents, but act with limitless compassion, remembering that when we were helpless children they preferred us to themselves. Mothers are particularly honored the most: Prophet says: 'Paradise lies at the feet of mothers'.
SATURDAY Bilal woke up early and wake me up. Zarrar was already up and busy on computer. Check on girls and Khansa was already up. Then Zahra and Ammar woke up. After taking care the diaper changing and washing faces and brushing teeth. I bring every one down stairs. Lilli did not came and i did not had a single clean pants for girls to wear since their diaper always leak out, i am going through so many clothes. Put a load in the machine to wash. Feed every one breakfast fast. Start cleaning up the house. Ammal came by, Husna find her for me for baby sitting job. I ask her for washing and cleaning and she said she can do it so i ask her if she can help me today, She stay for help. She vacuum the rooms while i give girls a bath one by one. After dressing them i bring them downstairs. Give Ammar a bath and then Bilal took a bath his own. I clean up the bath room and bed rooms. Team from Noor ul Iman school came over. Bilal was happy to see the boys. Girls bring me flowers for mother's day. It was so nice of them. They are so beautiful.Thanks you guys. Boys took Bilal to see the movie called "The Wild" and girls help me feed Abeerah, Khansa, Zahra and Ammar. After they took kids in the back yard and play with them. I got ready and about to get out to go shopping when Zarrar came back with his friends so he and his friends came along to go shopping. We went to closer supper market and get some groceries, put them in the car and drove to the meat store. Get some meat and came home. it was the fastest shopping i ever did. It always took me couple of hours to fill two carts of groceries. Good to have extra hands to carry bags from car to the kitchen. Every one looks ok dealing with my kids. Bilal was back. he did not go to movie because of too much rush and they end up going to dunkun Donuts. He loved it. And he was very happy. Zarrar play foot ball with boys for little while. Girls help me feed my kids. Then every one get ready to go. It was so nice to meet them all. After they left. I put all the groceries away. Zarrar been working on putting a foot ball team together because he is challenged by high school kids to play a game with his old team. They were having a practice with some boys at our place. I made fry chicken to feed them and then end up having a BBQ. After eating boys did practice. Bilal play with them and learn to catch the ball. after they left, I did some planting in the yard while girls play out side. I bring every one inside. My in-laws came over and we did more BBQ. Every one left after Dinner. I feed my kids and make them ready to bed because it got really late. Zarrar fall a sleep in no time after playing all evening. Put Abeerah and Khansa to bed. Abeerah been really fussy and crying time to time with her teething. I give her pain medication. Zahra cry for hour been over tired. Ammar stay up late like always. i went to bed really late when every one was sleeping.
Tayyaba beg.
Sunday, May 14, 2006 0:16 AM CDT
FRIDAY. After sending kids to school, i went back to bed because i did not slept good last night and making 4 kids ready while run up and down the stairs many time, make me tired. Wake up 10-am and make Ammar get dressed. Daina, Ammar's therapist came by. After she left, i made breakfast and we all eat. Zarrar went for Jumma and i clean up the house. Zarrar went to pick Bilal up from his stop. I did some gardening till Zahra came home. Then Abeerah and Khansa came home. Zarrar took Bilal to Musjid fro his class. Ammar's DI canceled because her daughter is sick. I cook Dinner. Zarrar and Bilal came back. Zarrar get dress and left for work. Elaine came by. She stay little while. Zahra starting to cry. I feed every one dinner and make them ready for bed. Put them to bed little late. Abeerah been fussing all evening a lot and keep putting her hand in her mouth. I check and find out that her two front teeth which Dentist and her Oral surgeon left it in her mouth with hoping to come out so Abeerah can have her pretty front teeth in her mouth. They started to coming out. I was so exited to see that because there was a chance that they might never come out and in future cause her pain and she have to get in OR to take them out. It is big relief to see that. I felt so bad when i was told that they are not leaving any teeth in front. Give her pain medication so she can calm down with her teething pain. After putting every one to sleep, i clean up the kitchen. Ammar stay with me and we both watch some TV then we both went to bed.
THURSDAY. Wake up and make Bilal, Zahra and Khansa for school. After they left, Qasim(Zarrar's nephew) came over to watch Ammar so i don't have to cancel Ammar's therapies. Wake Ammar up and make him ready. Make Abeerah ready and bring her downstairs. Feed both of them breakfast. Then i went to get dress. Zarrar got ready to go to. Ammar was upset watching up leave with out him. We reach in NY 30 minutes early. Find a parking space about three blocks from the hospital. After waiting an hour we called in. Meet Dr. Robert Morian. Two medical students were with him. He ask us all about Abeerah's history. It was nice to talk to him. He been dealing with some kids with MPS and knows the syndrome for while. After we done, we drove back home. In the way stop at the meat shop and get some meat. Qasim did great job baby sitting Ammar. His morning ABA therapist canceled and Ammar get to spend more time with Qasim. He is great with kids. Came home and we all eat. Zarrar went to get Bilal and later i receive Abeerah, Khansa and Zhara from Buses. Took the kids in the back yard for while. it start getting little cold so we all came in. Ammar and Bilal was tired and both fall a sleep. Cook Dinner. Husna(sweetest girl on this planet) came by. Then Ammar's DI came for the therapy so i wake him up and he got busy with her. Zarrar left to work. I feed kids dinner. After Bilal done doing his homework. I start making kids for bed. Zahra start crying. i make every one ready to bed but Ammar and Zahra was wide awake and did not want to lay down. Both stay up till late. It was heavy raining outside and we had a flood warning for some area's. I keep falling a sleep while Ammar was jumping on my bed.
WEDNESDAY After sending Bilal, Khansa and Zahra to school. Wake Ammar up and make him ready. Make Abeerah ready for her appointment with Dr. Marion which we been waiting for long time. Cancel Ammar therapies. Put stroller in the car and buckle Abeerah and Ammar up in the car. We drove to NY. It was about 40 minutes drive. We were there 20 minutes early but there were no parking any where. We drive around and around but no luck for parking. It start getting so frustrated. I call Dr. office to tell we are running late in looking for parking and we told that we are early there. Actually 24 hours early.
I am going crazy or what? Got to buy a calendar.
Some reason i been using the wrong date on all the papers for last couple of days. It was upsetting for all the trouble and dealing with made traffic for nothing. Zarrar went to get Bilal from the bus. And then Zahra and Khansa came back home. It was cold out so we all stay in. Cook dinner. feed every one Dinner. Kids watch TV. Zahra cry for while. Help Bilal with his homework. Put every one to bed. Clean up the kitchen and went to bed. Tayyaba Beg.
Wednesday, May 10, 2006 7:43 AM CDT
TUESDAY Send Abeerah and khansa to school. Bilal and Zhara stayed home. Zahra slept till 11am. When she woke up, she looks happy. Ammar did great with all his therapists today. Zarrar spend his afternoon with his naphew.Bilal's knee felt better. I did some work in the garden. It was chilly out side all day. Which is not good for my family. Kids get really boared when they have to stay in one place all day. Kids did great today. After putting every one to bed, I start assorted all the paper work that been piling up for while on my kitchen counter, in the bed room and on my filling cabnenet and it took me houres to finsh it. I finsh going through every thing and it was 3am. Too tired and went to bed leaving papers all over the place.
MONDAY. It was little cold today so we stay indoor. After making dinner and feeding every one, I help bilal do his homework. He was very frustrated. he keep complaining that his leg hurt. I clean his knee and put medication on it. Zahra start cry by the time i start making girls ready to bed. I bring every one upstairs and put Aberah, Khansa to bed. But Zahra did not want to lay down at all. She cry and cry and did not want to sleep. I keep her in my room with the other two boys. Every one fall a sleep but Zahra stay up very late. Finally she fall a sleep around 2:30am. I went back down stairs and clean the kitchen and check all the doors and window and then check on Abeerah and khansa. Then I went to take my rest. It was not long after my eyes was close that i felt so wet and cold. Open my eyes and see Ammar was up and he drop the bottle of water on my side table on my bed. I had to get up change my cloths and bed cover and my comforter. Change Ammar's shirt and then we both went back to sleep.
SUNDAY Zarrar woke up early but i have no way getting up due to my back was in great pain. I woke up when i heard Khansa and Abeerah making noises to inform me that they are up and needed to take care of them. After taking care of them, Changing their clothes and washing their teeth. I bring them down stairs. Zahar's nose was running very badly. We all had a breakfast. Zarrar's friend came over. I make kids ready and we all went in the back yard. I did work in the yard planting while kids play around. Abeerah watch me planting. Zarrar cut the grass. It was every one diaper change time and it start getting cold too so bring them all inside. Cook dinner. Zarrar and Bilal went to B.B.Q at his brother's house. And i feed the kids at home. After cleaning the kitchen, i made every one ready to sleepy with her crying and going up and down the stairs. She even breath funny when she is crying and having a behavior issues. Ammar also stay up late. FInally by 4:30am she fall a sleep.
SATURDAY. Had a very little sleep last night due to Abeerah. She been having a sleeping issues. And she keep screaming all night long. I want to sleep late till kids are in bed but early morning 7:30am,Zarrar wake me up because on of my old friend came by, She left to over sea's while back and now return to USA. It was nice to see her. Zarrar left to go to get plants to grow in the garden with his sister. We both had a chat for while and drink coffee. After she left i start with Abeerah to give a bath and stop on Ammar (5 kids) a bath one by one. After dressing them I bring all of them downstairs and feed them breakfast. Khansa was not happy and she start crying with tears. She wine and wine for 2 hours. I try to make her happy but did not worked. She been through that before and that is behavioral problem. Lilly came and help me with the laundry and cleaning. By late afternoon, Team from Central Jersey arrived. They help me watch the kids. Some play with Bilal. Abeerah did great. She was very calm. Later they took every one outside and give my kids great care by playing with them. Ammar and Zahra had a ball. They also did work on our project that i want to do for long time.
After every one left. I feed the girls. Zarrar was very tired and he just sat on the sofa and fall a sleep. Bilal helped me give plants a water. We did not do much later. Make kids ready after feeding them dinner. I took them upstairs and put them to bed. Abeerah and khansa fall a sleep no time but Zahra start crying out loud. She was freaking out. She looks scared. I stay closer to her. She also had cold which was bothering her. Finally after lot of rocking and swinging her, i put her to bed and she fall a sleep.
Due to go through many medical appoitments for each kid, And i have no one to watch my other kids when i need to go. I am in need of a baby sitter. If any one know any body can do the Job, Please contact us.
Tayyaba Beg
Friday, May 5, 2006 9:36 PM CDT
Thank you so much for the continued prayers and support you have done for us.
Nothing has ever goes smooth here. My kids always find some thing to make me go out of my mind. Yesterday, when i went to get Bilal from his bus after school at the stop. But guess what, He was not in the bus. All the kids came out and none of them know where is Bilal. Every one say they did see him in the bus. That freak me out. Bus aid said that he gets off two stops before. That just give me heart attack. Bus driver ask me to follow them so i drove behind them stop to stop but there is no sign of Bilal any where.I wasgetting really upset at that point. Even he got off the bus but he do not know how to get home. I did not have the number to the school in my cell. And i was so shaking that i could not even dial any number. Finally through operator, connect me with school and find out he is in school. Thank God he is ok. Drove to school and find out the teacher put him in the bus but he get off to look for his friend but when came back, bus was gone. But it is aids job to keep an eye on kids. I am just happy that he is alright.
Abeerah has improved a lot from last week. She is babbling a lot. She is more alert and calm now. She is going to school and doing fine. Today she was very active. she start having sleeping disorder again and hardly have couple of hour sleep in last three days.
Zahra been very hyper. Last night she took her diaper off and make a mess in her room which i end up giving her bath and then did lot of scrubbing and shampooing and got finish late night. She did not do good today. She came home crying and cry so much rest of the day. I try to calm her. She do not to go out or jump on trampoline. Give her pain medication. I try to put her to sleep but nothing make her calm. I Order pizza for her which always makes her happy but that did not do it either. SHe stay up all night.
Ammar did good with his therapist today. He said some new words and sit still his whole therapy time.
Khansa is alright. She is drooling a lot these days.
Weather is getting nice and i did some flower planting in the back yard. Bilal help me in that. Girls love to be out. Ammar always sneaking out in the yard. He can jump for houres and houres on the trampoline.
A special child's Mother When I was young, I'd often say, I'd like to be a mom someday While playing with my baby doll, I thought that jobs not hard at all I'd have a baby, maybe two, a girl in pink...a boy in blue Well I grew up and sure enough, The baby that was sent to me, was born with disabilities At first I'm frightened through and through, there's much to learn to care for you This wasn't in my plans at all, when I was young and played with dolls So much special care required, I'm often scared and often tired As months and years go slowly by, I smile a lot but sometimes cry To watch you grow and not complain, though you endure your share of pain Oh, how I'd hold you and I'd pray, that you'd be healed and whole someday But I knew that was not to be, not physically or mentally And so I taught you best I could, your progress isn't very good But I did realized, a I gazed into your loving eyes That I had learned so much from you, determination...courage too A love so unconditional, it floods my soul and always will I'm proud to say I gave you birth, for you're an angel here on earth
Tayyaba.
Tuesday, May 2, 2006 0:28 AM CDT
Sorry for not updating for while. Its been really busy here. Abeerah was in recovery from her oral surgery and kids had spring break. I was trying to keep up with every thing Which is lot to do.
I want to thank all of our readers for your support during and after Abeerah's oral surgery. Your nice supporting words and prayers means so much to us. THANK YOU.
SATURDAY. After waking up, I start my day with giving kids a bath. Zahra was awake so start from her. After dressing her bring her down stairs and give her glass of milk to drink. After Khansa's turn and then Ammar. While i was dressing Ammar. BIlal jump in the tub and took a shower. In the end give Abeerah a bath. My shoulder got hurt with a click sound yesterday when i was carrying Abeerah downstairs. And with this giving every one bath, putting them in the tub, rubbing scrubbing and fighting with clothing to be on them and carrying them downstairs give more harm to my shoulder. Lilly came to help and i thank God for sending her. She was here after her long break. She start doing the laundry which was mountain high. After giving every one some breakfast, I help Lilly to clean up. We spend some time cleaning girls room and did rearranging there which i could not do it myself. Zarrar was sleeping. Abeerah look so good today. She looks so calm. Bilal was waiting for the boys coming from Noor-ul-Iman school. Feed Zahra and khansa lunch. Team from central Jersey came to help. They took the girls outside in the yard. Boys played with Bilal. And i got two hours break. I want to go shopping which i have not done in a while and suffer each time i have to cook food. I left to do some shopping. Zarrar stay in bed because he was working tonight so he need his sleep. I did shopping and shopping. When it ring all up it came to over $400.00. Oh my, i put some things back to bring the numbers down. Put every thing in the car and reach home. My shoulder was hurting so much and i did not know how i will take bags and bags of groceries inside. Then whole team of boys and girls help me out. My special thanks goes to Jammal, Omer, Ahmed , Lilla and Amira. They all help me bring every thing inside in no time. Thank you guys for all the help. Also thanks to the sisters for all the help and making this trip happen Every one get ready to leave. They watch my kids really nice. After they left. I start putting groceries away. Cook dinner. Zarrar woke up and left to work. After feeding and changing girls and Ammar, Bilal and i did little digging in the back yard to plant some flowers. Play with Zahra and Ammar. Then make every one ready to bed and take them upstairs one by one to put them to bed. Bilal give my massage to my shoulder and then he went to bed. I clean the kitchen. Zarrar came back from work late night.
SUNDAY. Zarrar went to mussjid early. I stay in bed late and woke up with kids noise of getting up. After taking care of each one and feeding breakfast, Bilal play on my computer and kids watch TV. Then i make every one ready and we stay in the back yard and enjoy the nice weather. Zahra and Ammar had fun jumping in the trampoline. Zarrar did his sleeping for ready to work at night. Zarrar child hood friend came with his wife. They stay for while. After they left. I took kids inside because it was getting cold out. Me and Bilal did some planting. Zahra was really upset and crying. She get over tired with jumping in the trampoline. Zarrar took her to drive around. When she came back she was happy. Zarrar's sister and brother came over with family. they stay for while and sit by the fire made by Zarrar in the fire pit. After they left, i cook dinner and feed every one. Zarrar left to work. Then i struggle to cut 4 hyper, not sitting still kids nails from fingers and toes. That made me really tired. Make them ready to bed and took them upstairs one by one and put them to bed. Clean the kitchen and went to bed.
MONDAY. After keep turning the alarm couple of time, get up. I felt really tired and my shoulder was in so much pain. Start waking kids up. Start from Bilal. Make every one ready. Zarrar took them from the stairs to bring them down stairs. And he make their glass of milk ready. I made lunch box ready for Bilal and Zahra. Zarrar took Bilal to bus stop. After putting shoes and jackets on the girls. Put them in the bus. Abeerah was going back to school after long time. She was looking so much better today. After kids left, I made tea for Zarrar and we watch TV together for little while. Then i wake Ammar up and make him ready fro his therapist. He got busy with therapist and i took a nap for hour. Ammar and i play together because his other ABA therapist canceled for today. Ammar went with me to get Bilal from bus. Then both play outside in the yard. Waather was really nice today. Zahra came home from school, then Abeerah and khansa came home. I was happy to get Abeerah from the bus when she was not crying and niether her bus driver told me she cry all the way home like past two months. THANK GOD. Bilal was really tired and he fall a sleep. Ammar went out and came back head to toe cover in dirt. Give him a quick bath and change him. His speech therapist came and he did really well today with her. After his D.I therapy , he fall a sleep next to Bilal. I cook dinner while kids watch Dora, Zarrar eat and left for work. I feed girls dinner. Then Bilal and Ammar woke up and eat dinner. Make girls ready to bed and put them to bed. Khansa fall sleep right away but Abeerah and Zahra stay up. Help Bilal with his homework and send him back to bed. I clean up downstairs. Zahra keep banging her hand on windows. She was not happy and did not want to sleep. Ammar decided not to sleep either. He plays around. I try to put Zahra back to bed and she fall a sleep. I did some work on computer. I heard Abeerah's crying, ran to see her, She was lying on her stomatch and moving her hands and feet in try to to get on her back. I fix her and her bed sheet was stained with the blood coming out of her mouth. After taking care of her, I went to bed. Woke up when Ammar touch my face with some thing wet. I turn the light on to see what he is up to in dark and there was my lip stick rubed all over the carpet. Clean his hands and my face. Sing his poems to him and we both fall a sleep. It was 3:30am when i saw the time before closing my eyes.
Tayyaba beg
Wednesday, April 26, 2006 0:45 AM CDT
Due to go through many medical appoitments for each kid, And i have no one to watch my other kids when i need to go. I am in need of a baby sitter. If any one know any body can do the Job, Please contect us.
Monday evening, our sewerage backed up and it end up filling our whole basement with dirty sewer water. All the storage stuff, all my sewing and my husband computer stuff get damage. I spend hours and hours cleaning it up. End up throwing many things in the garbage. Any little water usage in the house was ending up in the basement. And water keep flowing backward. Ending up smelly dirty water in the basement. Zarrar went and rent the machine from :Home Dept." and did try to open little bit blockage in the main pipe before he left for work. Abeerah was crying a lot. It get hard taking care of her. She been eating well. Doing pee and poop ok.
TUESDAY. I could not sleep much all night. Abeerah cry most of the night. She seams in lot of pain. I could not understand what is bothering her now. She slept little while and wake up again and start crying. After sending Zahra to school. I help Zarrar work on the sewerage problem again. After fixing that huge problem, Zarrar went to return the machine and i vacuum downstairs. Make Abeerah ready for her appointment. I got dressed. Zarrar came back and he help me putting shoes on Abeerah and then put her wheel chair in the car. He stay home to watch the other kids and i drove to the Dr.'d office. We reach there in 20 minutes and Dr. was about ready for us. I was happy for not waiting in the waiting room. Dr. Defalco checked her. He said the reason for bleeding is because they took 6 teeth out from at same place which left a big hole in her gums. It will take some time to heal. And she is uncomfortable because of the stitches in her mouth. And every thing else looks good. After setting an appointment in two weeks, We came back home. Abeerah was not happy all the way home and keep kicking my driver seat from behind. Social worker was standing outside. We came in. Make Abeerah comfortable. Zarrar was busy talking with her sister who drop by. I talk with social worker finding a baby sitter for my kids. After little while Ammar's therapist came too. He was still sleeping. waking him up make him cranky and he end up crying the whole ABA session. After therapist left, I bring Khansa down stairs. Feed Bilal, Ammar, Abeerah and Khansa breakfast. Bilal and Ammar went out side and play in the yard. Abeerah cry and cry. She was screaming so much. I gave her pain medication but she been very upset all day. I message her back and did not feel right. .That could be causing her the pain. Zahra came back from school. She also play in the back yard. I make khnasa ready and let her go out to walk around in the yard. Then i cook dinner. Ammar end up in the mud. Zarrar took Bilal to his Quran class. I bring every one inside and feed them. Clean Ammar but he end up again back in the dirt. His therapist came and he was head to toe fill with dirt. Clean him and change him. Zarrar and Bilal came back and they eat dinner. Zarrar left to work after. Bilal watch TV with Ammar. Abeerah cry the whole time. After feeding every one, make them ready to bed. After crying and screaming, Abeerah fall a sleep. Ammar and Bilal stay up late and then both went to bed. I clean up the kitchen fold some laundry. My feet been brining a lot every time i put them off the ground which giving me hard time these days. After checking on girls, i went to bed.
Tayyaba Beg
Monday, April 24, 2006 1:20 PM CDT
Friday, Abeerah did not feel good at all day. She was crying a lot and very unhappy. After talking to the dentist, start giving her Mortrine instead of Codaine. By afternoon she clam down. Bilal class was doing a play. I went to see it and it was very nice. Kids did a great job performing the play. They did play on three great ladies in the past. HARRIET TUBMAN, HALEN KELLER and AMELIA EARHART. I got in to tears when in the play Helen Keller parents sing the song "We wish you could talk, We wish we could hear you.... " SATURDAY & SUNDAY.
Its been raining all weekend long. So we all stay inside and did not do any thing exiting.
Abeerah did feel much better. She been calm and very quite. Swelling get less but still bleeding through her gums. She is eating and drinking little better now.
Zahra and khansa had a good weekend.
Ammar had many on the floor moments. He was very cranky. He wants to go out side.
Bilal went with his Aunt and cousins to see "ICE AGE 2-The melt down" And spend a night there.
Bilal, Abeerah and khansa are having a spring break this week, Since Abeerah is not that well, we have no planes for any thing. Kids will be staying home whole week. Only Zahra will be going to school this week. Tayyaba beg
Friday, April 21, 2006 1:03 AM CDT
WEDNESDAY. Abeerah was in lot of pain all day. Her whole face was swollen up. Her tongue was also swollen up. She could not eat anything. I try apple sauce, pudding and soups but she did not take it in. She hardly took some sips of juice. Her gums keep bleeding mildly and time to time i have to clean it up. She is on pain medication which i gave her every 4 hours. Also taking antibiotics. Zarrar and myself did not feel good all day with fever, runny nose and watery eyes.
THURSDAY. Abeerah stay up last night and she was very uncomfortable because of all the swelling and pain from the surgery and she also felt hot. I had fever and runny nose myself. My day start when Bilal wake me up to help him get ready for school. I made his lunch ready and went to make Khansa ready. Zarrar made breakfast for Bilal then he took him to drop him at school. Zahra was not feeling good so she was not going to school today. After making khansa ready, Bring her downstairs and give her glass of milk and make her school bag ready. After she left for school. I clean up the living room. Wake Ammar and feed him. His therapist came and he got busy. Zarrar left to see the play that Bilal and his class was performing. I had a meeting today with Ammar's ABA case worker. WHich started at 11am. They set up new goals for Ammar. Both ABA therapist also were there and they talk about Ammar's improvments and concerns. After they left, i dressed Zahra and feed her breakfast. Give Abeerah bath. SHe was happy and play with water. SHe had hard time sitting her own. I keep holding her hand so she do not put in her mouth but she did able to sneak her hand in and cause some bleeding. Ammar came and jump in the tub with his clothes in. After dressing Abeerah, Give Ammar bath also. I took care of Abeerah. Feed her mix fruite pouree. She was slow but she eat the whole bowl of it. Then she drink half of glass of juice. i gave her medications. Comb and style her hair.
Then i get ready to get Bilal from the bus but Ammar start crying when he saw me leaving so i had to take him with me. My sister in law was stopping by and she was parking the van so she took us in her van to pick Bilal up. Came back and Bilal play with his cousin. In little bit, My sister in law left to go back to Massachusets. Zarrar took Bilal for his class. Ammar sneak outside and play in the mud second time. End up giving him bath again. Khansa came back from school. Give her juice and make her comfortable. Zarrar, and Bilal came back. After dinner, Zarrar left to work. Ammar's D.I therapist came he got busy. After i took kids out in the back yard to play. I check all the gardening stuff to get started with seeds then Ammar desided to go back in dirt again. Bring every one inside, Change Ammar's clothes and feed every one the left over dinner. Bilal was complaining that his head hurts. After taking pain medication he went to bed. Zahra was very noisy. I made khansa and Zahra ready and put them to bed. Feed Abeerah very soft and liquidy oat meal. She eat it all slowly. Give her medications. Her gums was still bleeding. swelling reach to her eyes. Ammar was very cranky and fussy becasue he was very tired. I paly with him and try to put him to sleep. But he keep being cranky. Finally he fall a sleep then Abeerah start crying. She start getting very uncomfortable. I give her pain medication and try to make give her juice but she was unable to take it inside. I clean up the kitchen and carry her upstairs. My back was in pain already and it got worst. I could not do any thing after, had to lay down. Abeerah lay down next to me and cry and being cranky.
Tayyaba Beg
Wednesday, April 19, 2006 10:22 AM CDT
Abeerah's Surgery went really well. She is in recovery now and looks much better. Still her gums bleeding little bit and lot of swelling on her face.
TUESDAY. Wake up around 6:00am And start making the kids ready for school. My sister in law(Niala Appa) came over to help me out with kids and she need to meet the bus drivers so she can get them after noon from buses her self. Make Bilal, Zahra and Khansa ready for school and make lunch boxes ready to go. After kids left, We had a breakfast. Wake Ammar up and dress him and feed him breakfast. His therapist came and he got busy. Clean up little bit and wake Abeerah up. Made her ready. Get dressed my self. Zarrar got ready. Show Niala Appa kids clothing, diaper and other stuff around. Then we left to the hospital. Zarrar drop me and Abeerah front of the hospital and left to park the car. When he came back we went upstairs and sing in. After all the paper works and waiting finally called in. Dr Jackson and Dr. Defalco came to see us. We talk for while about the procedure. We were so happy to see Dr. Jackso there. He is Abeerah's regular dentist and very nice. He really help us out so much in many Abeerah's dental issues. Put Abeerah a gown on. Then we met the Anesthesiologist. Zarrar was going in in the O.R so he wear a white overall with mask and hat. They took Abeerah in the O.R and i kiss her good by at the door. My heart felt so much pain for my baby and i keep praying for her. Zarrar came back and told me every thing went fine giving her anesthesia. We wait about 2 hours in waiting room. Then Dr jackson came out and explain every thing. They removed 10 teeth and also did 4 fillings. Dr. Defalco join us too. DR. Defalco & DR. Jackson
They both talk to us for while and give me instructions and give me prescriptions for pain and infection. Abeerah was still in O.R for her ABR. Then we met a nice family in waiting room. They offer us salad to eat. After half an hour we were called in to see Abeerah. She was waking up and do not look happy. Her mouth was so swollen up and bleeding. She was very upset so they gave her Morphine for pain. Zarrar left fro home and I hold her in my lap. We move to in a other room. I hold Abeerah's hands because she keep trying to put them in her mouth and it could cause heavy bleeding. Finally we get to give her sips of juice. Hour later i gave her apple sauce. Her mouth was continuously bleeding slowly and i keep cleaning up. After three hours later she looks much better. it was 7:00pm then. I call Zarrar to come and pick us up. I sign the discharge papers. Zarrar came with his brother and sister. Zarrar help me dress Abeerah and we left the hospital about 8pm. Drop prescription to get ready. Bring her inside and put her arm set on so she can not bring her hands to her mouth. All my husband family was there. My sister in law(Niala) did great with every thing but she do look tired. We all had Dinner which was made by an other sister in law. Abeerah start getting fussy, so zarrar left to pick up her medications. After dropping the medications, He left to work. I gave her medications with my sister in law's help. She stayed over fro night. I make Zahra and Khansa ready to bed and took them upstairs. Khansa was very happy. Zahra start crying and cry for while. She seems tired. Niala Appa try to put her to bed too. After while i put her in her bed and she fall a sleep. Ammar also fall a sleep. He play a lot out side today so he was tired. Bilal get ready to bed but keep playing around with his cousin Liala. So i force him to go to bed. After all of my kids fall a sleep. I talk for little while with my sister in law and Liala and drink tea. Then we went to bed.
Abeerah woke up middle of night and cry. She was very fussy and in lot of pain. Blood was still coming out of her gums. I clean her face. I feed her pudding and apple sauce and give her juice and give her medication. I play with her. She keep making noises and stay up till morning.
Our special thanks goes to My sister in law Niala for watching the other kids when we were with Abeerah at the hospital. And our Thanks goes to Doctors and Hackensack hospital staff. Who did a great job taking care of my daughter Abeerah. Also my thanks goes to those who pray for us in our this difficult time.
Tayyaba.
Tuesday, April 18, 2006 0:20 AM CDT
Need your prayers for Abeerah's dental surgery today. She is also going to get her hearing test done while she is under journal anesthesia.
Surgery will be startring at 1:00am. I hope every thing goes well with her. Ameen I am very nervous about the whole surgery thing. My heart start beeting hard and my stomatch start aching when i think of my sweet baby going under Anesthesia with a big risk. Need your support and prayers. You can call me at 201-390-1730. We will be leaving to the hospital by 11:30am. She went through so much pain over a month. I hope all her dental pains just go away after this. Ameen.
We took a trip to Massachusetts for weekend. We were invited at Zarrar's uncle's house and my entire in laws family were going there too. Friday evening spend in packing up. Drive over night. We reached at my sister in law's house early Saturday morning. Every one was already there. By noon every one left to Uncle's house but we stay for little longer at my sister in laws house while Zarrar took the van to get fixed. By 2:00pm, pack kids in the van and drove to uncle's house. Every one was playing outside.
Weather was very nice. After lunch, every one play out door. Girls love it there. Aammar had a ball.
He walk and walk all around the huge yard. He really enjoy being Referee in between New Jersey VS Massachusetts football game.
By evening every one get ready to leave to go back to NJ but we stayed there. Abeerah did not feel good and she cry time to time. Then Zahra start crying. She cry and cry. Nothing made her stop or calm down. I took her for walk, put Barney and even drive her in the van but she was not happy. After crying for hour, then she fall a sleep. Ammar and Bilal fall a sleep after having a busy and tiring day. Abeerah cry for while. I gave her medications. We spend night there. Uncle and Auntie did really good care for us. I did not even know when i fall a sleep and when morning started. After breakfast. I start making every one ready. Pack the van and we say good by to our hosting family. Our Special Thanks goes to the family who made our stay as comfortable as possible and put up with us. Thank you Mamoo jan, Mamani Jan, Haroon and Uzair. We had a great time
Coming back, Abeerah cry out loud all the way to my sister in law's house. She was not happy at all. Drop my sister in law and her daughter at their house, She also stayed with us at uncle's house. Then we hit the road to get back to NJ. Abeerah, Khansa and Zahara start crying all together. I keep trying to calm them while Zarrar did the driving. Give medication to Abeerah, she seems in lot of pain. Kids was hungry so we make a stop. Bilal did not feel good and complain that his head hurts. Then he end up throwing up.
In NY traffic move very slow. We reach home by night. Bring kids in and make them comfortable. Abeerah been constipated for four days. Give her medication. After feeding kids, Put them to bed. Bring all the luggage inside. Ammar stay up very late.
MONDAY.
Khansa turn 8 yeard old today.
Girls did not feel good so only Bilal went to school today. Ammar had therapies. girls need and feed them breakfast. Zarrar watch them and i took Abeerah to the Dr to get clearance for the surgery. After checking Dr. give the OK for the surgery. CAme home. Zarrar wen to work. Sing Khansa HAPPY BIRTHDAY. Today she turn 8 years old. She is doing much better than Abeerah at this age. She chew her fingers a lot and drool a lot. She start biting every one come closer to her. Feed every one Dinner. Clean up the house. Did some laundry. Give girls medications and make them ready to bed. Clean the kitchen and get ready to bed for big day tomorrow.
Tayyaba
Friday, April 14, 2006 2:45 AM CDT
April 17th.
Abeerah's surgery date is fix on April 18, 2006 at Hackensack Hospital.
Abeerah is doing better. She did not cry much. She is not on any pain medication but do not seems having any pain. She is very weak. She start eating again but taking long time to chew. I did not made it to Abeerah's appointment yesterday with Dr. Robert due to things did not went right. After taking FLEET and MARILEX, Abeerah did poop after seven days. that was big relief for us.
THURSDAY. Zarrar came home from work and wake me up when my alarm being ringing for half and hour. Some reason i am unable to get up with the alarm clock these days. Make Bilal ready and make his lunch and send him out the door with Zarrar so he don't miss his bus. Then wake khansa up and make her ready. Wake Abeerah up and make her ready too. She was going to school after a long time. She is feeling little better today. She did feel better after taking care of her constipation yesterday. She looks very weak. It was hard to make her ready when she could not stand for me to brush her teeth or wash her face and other morning needs. I carry her down stairs. Zarrar give them milk to drink and i made their school bags ready and write a quick note in the note book for the teacher. Bus came and Zarrar help me with girls to put them in the bus. We both stand for while watch the bus leave. I was praying for Abeerah to have a good day. I clean up the living room and wake Ammar up. Feed him breakfast. Zarrar went to bed to get some sleep. Ammar therapist came and he got busy. Check on Zahra, She was up and playing with toys. Bring her downstairs and after her breakfast, put TV on for her. I went to get some rest and wake up with therapist call that she is ready to go.
I wash some laundry and play with Ammar. Therapist came back at 2:pm to make up some missed hours in past. Ammar get busy and i went to get Bilal from the bus stop. Bilal want to play out in the yard and therapist took Ammar also in the back yard. I put shoes on Zahra and let her play out side. Zarrar woke up and i make food ready for him. Abeerah and khansa came back from school. Abeerah was bit cranky. I check the teacher note and she wrote that Abeerah had a great day. She was very calm all day. And every one was happy to see her back. Bus driver told me that she cry in the bus coming home. I take care both of them and give them juice to drink. Zarrar took Bilal to his class and i put all the bills and papers together. Find Ammar standing in the toilet with his shoes on and all the shampoo was rubbed all over the floor. Clean him and clean the bath room floor. Feed the kids.
When Bilal came back, Zahra and Ammar play in the yard with him. Zarrar left to work. Wether was nice then it turn in to rain. Ammar end up in the mud and get dirty so I give him bath and dress him clean clothes. But they did not last too long because he went back in the mud again. Bring him in, clean him and change him again. Abeerah stay laying down and did not move at all. Khansa keep chewing her fingers a lot and she try to bite any one come closer to her. Zahra was very noisy and jumping a lot all day. My friend Elliot came by and we talk fro while when Ammar fall a sleep in my arms. After she left i feed dinner to every one. It was late so make every one ready to bed. Zahra cry for while and walk up and down stairs. She looks tired. Put khansa to bed first then carry Abeerah upstairs and put her to bed. Then put Zahra to bed and she fall a sleep no time. Ammar wake up and cry for bottle. Bilal went to bed. He said he is very sad and miss his grandmother too much. He was said that he can not spend any night at her house now, like he use to do on his days off from school. I clean up the kitchen. Put more loads of laundry to wash. Ammar follow me around. We play little bit and then we both went to bed. Today was count as one of our good days. May GOD give us more great days like free from watching our children's suffering.
Tayyaba.
Wednesday, April 12, 2006 0:41 AM CDT
I could not update in few days. Every thing here still not quite on normal routine yet. People are visiting the family and phones are busy. Zarrar turn very quite and looks very upset. My mother in law's loss is a big loss for all of us. She was a great lady.
I want to say thanks to every one who call us and those who make prayers for us in regard of Abeerah's surgery which did not took place due to her fever and chest congestion. She been on an antibiotic but still not all better yet.
Also want to say special thanks to Noor-ul-Iman school team for giving us great help this Staurday.
Abeerah did feel little better since Saturday but still have time to time crying episodes. She did had problem peeing and did not went for three days. But Thank God that she went when we were about to take her to the ER. Still having problem with pooping. She did not go for 6 days now. Need prayers for her. She been just laying down all day long. She do not sit and do not want to stand at all. She looks very weak and not like my sweet jumping, laughing Abeerah at all. May Allah help her. Ameen.
Khansa is doing ok.
Zahra is off this week from school for spring break. she have crying moments at night before she go to sleep.
Ammar did not show any signs of any improvement this week. He been very cranky and banging his head a lot. He did not behave well with his ABA therapists.
Bilal is doing good. He miss his grandmother so much. And talk about her all the time.
TUESDAY Woke up little late. Make Bilal ready, Made his lunch box ready and drop him at school. Came back and clean up the entire downstairs. My sister in law called. She was very sad. We talk for while. she grieved for her mother.
At 9:30 am wake Ammar up. After changing and dressing, feed him breakfast. His ABA therapist came. First he cry then got busy with her. Zahra woke up and i bring her downstairs. After taking care of her needs, bring Khansa down stairs and take care of her. She had a bad rash in her back close to the tail bone. There skin is peeling off and there is a quite wounds. I been putting an antibacterial cream on it. She is very upset during diaper change time. I kept her home from school.
Make some calls to find a baby sitter for tomorrow morning for Ammar and Zahra for Abeerah's appointment with Dr. Robert Marion in New York. But I did not get any luck in that. I miss my mother in law so much at this point.
Bilal had a early dismissed from school. Me and Ammar walk to the bus stop to get Bilal and bring him home. Both boys play out in the yard. Keep checking on Abeerah, She stay sleeping till late noon. I try to wake her but she did not want to move. Social worker came and we make some calls to find a baby sitter. After she left, I bring Abeerah downstairs. She do not want to drink or eat. She keeping the food in her mouth for long time. Then choke on it when try to swallow the whole chunk. I gave her liquids to drink. Give her soups. Feed her boiled vegetables. Feed lunch to all. wash some loads of laundry. Zarrar took Bilal to Musjid and i change dresses on Khansa, Zahra and Ammar. Put shoed on and took them in the back yard. Bilal came back and join Zahra and Ammar in jumping on the tramp lain. Zarrar left to work. Khansa walk around in the yard one corner to other. I change Abeerah's clothes and fix her hair. She did not want to sit so i let her lay down on the carpet. Bring every one inside. One of my mother in law's friend came by. She talk for little while and then went to my in laws house. I feed every one. Ammar fall a sleep after his (D.I) therapy. Help Bilal in homework and make kids ready to bed. Abeerah fall a sleep. After i clean the kitchen, scrub the stove after using it so much all this week. When i was ready to go to bed because i was very tired but Ammar woke up and wants to eat. He kept me awake late night.
Tayyaba
Friday, April 7, 2006 1:18 AM CDT
Last few days been very very busy here. Many many peoples, friends and family members were coming over to pay their condolence. Some relatives came from Indiana and boston and stay for few days. My mother in law was a great lady and she touch many peoples heart. Her children having a really hard time dealing her loss. May Allah give them Saber. Ameen. Because all foods were served at my house, I did not get chance to update here. I want to thank all the nice community people who cook for us for couple of days. First it was a big shock but now when i do start accepting the reality of that she is really gone, it is just not easy. It just hurts so much to loos a great fried.
Abeerah did not feel good at all. She been crying a lot all these days. I did every effort to keep her calm when my house was full of guests. My brother and sister came from Indiana and did help me out with kids. I being counting the each hour till Friday to get done with the surgery so my poor exhausted Abeerah can be relax and out of pain.
Tuesday morning Khansa climbed on Abeerah's bed and bit her face about 4 times. I ran their with her crying. Took Khansa out of their and clean Abeerah's face. Her both cheeks and nose had several teeth marks.
WEDNESDAY. After sending Bilal, Khnasa and Zahra to school. Bilal went back to school after two weeks. Check on Abeerah. She felt hot. After feeding her light breakfast on bed, I gave her medications with some Tylenol to break her fever. Wake Ammar for his therapy. Last night every one left and my house was a huge mess. I clean some last night and start cleaning up. Ammar got busy with therapist till afternoon. When Abeerah woke up, i bring her down stairs. Bilal came from school. Then Zahra and Khnasa came back from school. Zarrar took Bilal for his class which he missed for many days due to he was sick for while. MY brother came with my sister in law. And we talk about my mother in law. She is the youngest one and she was very close to her mother. Zarrar came back and he sat with his sister, After she left, Zarrar left to work. But he did not look good yet to go. I feed the girls. Abeerah's fever did not went down and she start runny nose and coughing too. I was worried about her fever. Zahra was also coughing. I gave both medications. Make girls ready to bed Bilal play with his uncle and then went to bed. I look on internet to find plane ticket for my brother(shoaib). I kept him here to help me with kids when Abeerah go through the surgery. Shoaib went back to my in laws house with my brother in law because he was giving them some company. I clean up the kitchen and wash some loads. Lilly is away fro two weeks and i have so many bed-sheet, towels and pillow cover to wash and put it away which was used for the guest. After prayer, i came to bed. Ammar stay with me the whole time. He fall a sleep. I check on Abeerah, she did not look good. My heart break so much for her. She is not her self these days. After covering every one in blankets, i came to bed, when Zarrar call and told me that he is having a very bad time at work and he miss his mother. I could not sleep most of the night thinking all the things happening here.
THURSDAY. I woke up but very tired and did not feel good at all. Zarrar came back from work and went to bed. I went back to bed too because only Khnasa and Bilal was going to school today and there was still some time i had. But wake up with Bus horn, after sending the buses. Put garbage out to pick up. It was way too much garbage piled up there. Wake Bilal up, Make him ready and drop him to school. Came back and check on Abeerah, She did not have much fever but nose was running and there was coughing too. Her surgeon office call for the clearance and i told her about the fever. She call back again and told me to take her to the pediatrician for clearance. They can not perform surgery if she is sick whiten two weeks. I call and make appointment fro her. Wake Ammar and make him ready. Feed his breakfast. His therapist came and he got busy there. Zahra and khansa woke up, Bring them down stairs and feed them breakfast. After giving medications, Abeerah went back to sleep. She did not wet a diaper in last 24 hours. Thats makes me worried too. I got ready and make Abeerah ready to see the DR. My brother came back and he carry Abeerah to the car and belt her in the car. DR check her and call the surgeon that she do have bad congestion and some fever. Dr Defalco Dental surgeon cancel the surgery for Friday, i was very upset because i been waiting for this and want to get done with this. But Dr explain the risk of anathesia if there is fever or runny nose. Order food way back home. Came home and bring her inside. She felt like a peace of meat. She did not want to sit or stand or movr her own. My some in law family was here. We all eat. I went to feed the girls and every one left. Zarrar took Bilal for his class. He cancel to go to work because he did not feel good. After taking medications, Abeerah went to sleep. Dr office call and told me that surgery school for may 16th. I di not like it. i can not go on a day watching her in pain, so after she came up with April 16. I am still not happy for the long delay. I slept little bit when i was putting Ammar to sleep. I was very tired all day. Zarrar left to see his family. they were getting together at his sister's house. Abeerah stay lay down all day. I try to feed her but she did not want to swallow a bit, she keep the food in her mouth and do not swallow at all. And she did not pee yet either. He face do not look good either. After feeding every one, i help help Bilal with his home work. Cut every one's finger nails and put them to bed. clean up the kitchen. Me and my brother talk for while when Ammar run around. We make a call to my other brother and find out our Grand mother is not feeling good at all. She is very sick and her kids are gather around her. She is 80 years old. Please keep her in your prayers. I made bed for Shoaib(my brother) and Then i went to bed.
I want to say special thanks to all of you who been with us in our hard time and supporting us, by calling, writing nice words in our guest book and praying for our family. You made a whole a lot difference in our lives. Thank you.
Tayyaba Beg
Saturday, April 1, 2006 10:45 PM CST
I am not going to say much here but just a quick update on every thing happening here due to i am exhausted right now without having any sleep in three days.
Sadly and with broken heart to tell that My sweet mother in law passed away yesterday. May Allah Grant her a higher place in Junnat for her. Ameen.
She always help me so much. she had a great big heart and always very giving. She helped me so much with my kids and always be there for me when ever i call her. She could not do much since she got hurt in her shoulder but we always talk on the phone and share every thing. Last two weeks Since Abeerah been not feeling good, She been amazing help to us. She watch my other kids when we run around to Doctors with Abeerah. She help me with groceries. She was a very sweet lady. I am going to miss her so much.
My husband is holding himself and all his brother and sisters. He lost a mother and that is the hardest thing to go through. Need prayers for him.
Now we both have no parents.
Ammar, Bilal and Zahra been sick since Tuesday. Bilal had a terrible cough and ear infection. He and Zhara miss school since Tuesday and taking Antibiotics. .
Abeerah having some ups and downs. But she is not crying like before. I give her prescription med when she is in screaming pains. Khansa doing great other than chewing on her hands and drooling.
April 17th.
Abeerah's dental surgery will be on April 7th at Hackensack hospital. Surgery will start at 7:00am.
Tayyaba
Wednesday, March 29, 2006 11:17 AM CST
Abeerah's dental surgery will be on April 7th at Hackensack hopital. Surgery will start at 7:00am.
MONDAY
Woke up 6:am. Help Zarrar with putting the garbage out Then start waking the kids up for school. When Bilal get done getting ready, Give Khansa, Zahra and Abeerah bath and dress them. Bring them down stairs and Zarrar gave them Milk to drink. I made lunch box ready for Bilal and Zahra. After breakfast, put jackets on. Zarrar took Bilal to bus stop and i put Zahra in the bus. Give Abeerah medication. I was sending her to school today after almost ten days. With medications she seems ok. Zarrar help me with Abeerah and khansa putting them in the bus. After breakfast, wake Ammar and make him ready fro his therapists. Monday is a busy day for him. He got busy with therapy, i clean up. Zarrar went to see his uncle and Aunt at his mother's house. When he came back then i went to meet them and Zarrar stay with Ammar. I was worried all day for Abeerah. Zarrar went to motor vehicle to get new plates fro our van because some one stole our handicapped plates off from the van. I am still shocked that there is people like this out there. We did call the police for report and he wants us to cancel the registration. Its been couple of days without van is getting hard fro me to move around with kids. Bilal had a early dismissed at school so went to get him at the bus stop. I always drop Aliya at her house from the bus. But today we stand fro while but no one was home. May be they forgot about the half a day program. So she came with us. Bilal was so happy and they both play inside for while and then went outside in the play area. By 3:p.m. i call her house and her grandmother came to pick her up. Zahar came home and she was very happy. Then Abeerah and khasna came home. Bus driver said abeerah was very noisy all the way home. She try to make her stand but Abeerah did not want to put her feet on the ground. Taking from the bus i try too but she just hang in my arms and i carry her in and put her in her chair and she start crying. Her medication was good for 6 hours and it was little over 7 and half hours since morning. Her teacher wrote the note that she did very good at school. And the whole staff was very happy to have her back. I try to giver medication but there was very little had left and i could not make the whole spoon full but i gave her that any way.
I call the Dr. but she was busy and i left message. Abeerah cry and fuss for little while and then quite down for hour and half. But start crying again and become very hyper. Bilal did not feel good and keep coughing a lot. after giving him cold and cough medication, i send him to bed to get some rest. I cook dinner and feed every one. Finally Abeerah's Dr. call and we talk for while. she said that she can not give her any more medication because she will be addicted to it. She want all the other test done on Abeerah. she wants X rays, MRI, heart checked out and blood work done for operation. I was so worried that how things will go with very hyper and crying girl for two weeks. I gave her Tylenol and Benadrill. Make kids ready to bed. Abeerah cry and cry till 10:00am and then she fall a sleep. Zahra cry for little bit but after drinking her milk, i put her to bed. Ammar did not sleep till very late and i stay up with him. Then after checking on girls we both went to bed.
TUESDAY.
Woke up early and Abeearh was not happy making a lot of noise in her bed I wake Zahra and Khansa and make them ready for school. Bilal felt hot and Abeerah was not happy so both stayed home. After both girls left, took care of Abeerah. She was not very happy. Give her Tylenol. Bilal stay in bed. After afternoon he felt better. I call the Dr. Robert which an other MPS parent recommended. He been dealing with MPS kids. Felt better after talking to him. By 1:am get dressed and made Abeerah ready for her appointment with Anesthesiologist. My mother in law came to watch Ammar and Bilal. Zarrar also went with us. Abeerah cry all the way to the hospital. We had to wait an hour in waiting room and it was a very hard hour when Abeerah was not comfortable and keep crying. I went three times to the desk to remind them that we are here. Finally we called in. It was nice to meet Anesthesiologist. We ask thousands of question from him. Feel much better after meeting him. Then we drove to Dr Tantawi's office to talk to her and to pick up paper for Zahra's immunization record. Dr was not there and after filing application and long waiting, finally they gave us the paper. Drove home. Abeerah quite down little. Zahra was already home but Khansa did not came home yet. After Khansa came home, Take care every one and give them juice to drink. Try to call Dr. Robert to make an appointment for Abeerah but he was already gone. Bilal start feeling sick again. So send him to bed to have rest. And Ammar fall a sleep. Cancel his therapy. Abeerah did cry again for while. Feed girls dinner and make them ready to bed. Khansa and Zahra fall a sleep right away but Abeerah stay up late. Ammar and Bilal woke up. Made soup for Bilal and then clean up the kitchen. Both stay up late. My back was in lot of pain. Took painkiller. After having some discomfort, i went to bed.
Tayyaba beg
Sunday, March 26, 2006 1:00 AM CST
Hi every one. I am not going to write much in details because to my back in so much pain and i can not sit for more than couple of minutes. Just a quick update on every thing here.
Abeerah been sleeping and being very calm for last couple of days. She is not sitting much and do not like to stand at all. She keep laying down with both hands on her back. Finally we got the date for surgery. It will be on 7th of April in hackensack hospital. I know two weeks....wayyyyy...too far... reason for that is hospital have no opening and her audiologist and dental surgeon available on this date at same time. Now we need go through couple of appointments for pre operation meetings. I been giving Abeerah prescribed medications since the day we visit the Dr. Today i miss a doss on purpose just to see if we can make it two weeks. But she start crying out loud again so we are keeping her on medications. In two weeks i will need whole a lot of medication and i am almost finish with no refill.
One thing is clear that she it is not having any infection that bothering her because she been on antibiotics to cover that. Can be dental but I feel it is her back that is in pain. She continuously keeping her both hands on her back all day long. I know how much back pain can hurt because i am having that myself.
Last two days I felt very sharp back pains and pain killers not helping. Today I cry with blood tears when i lay down on my kitchen floor for hour with pain during cooking dinner that made me unable to move or do any thing. My heart breaks to even think not able to take care my babies who are so dependent on me. I need so much strength. I was very uncomfortable today and defiantly going to get my back X rays done on monday so i keep taking care of my children my self.
Also need prayers for Ammar. its been many days, he even said a word. He been very fussy and very cranky. Banging his head a lot on the ground or on hard surface. He been scratching, pinching and biting me. All my hopes on his improvement feels like drowning.
Zahra doing good. she been very happy and hugging every one. she been tripping a lot on any little thing comes in her way.
Khansa is doing very good. She been very calm and happy. Love watching her new Dora DVD today.
Bilal had a great time with Adrees (big brother program) today. He learn to draw a star today without picking his pencil and he is so happy about it. For Noor-ul-Iman, 8th grade kids, Bilal is counting the days till next sunday.
Here is some pictures from last Saturday.
Tayyaba Beg
Wednesday, March 22, 2006 11:02 PM CST
WEDNESDAY. Abeerah had a very hard day yesterday but after adding another medication and giving her an hour message last night , she calm down and sleep through the night, But there was a problem that she didn't pee or poop for over 30 hours. I keep checking her through the night but no wet diaper.
In the morning, Wake Bilal and khansa, make them ready and send them to school. I kept Zahra home because she need her MMR injection and school do not want her to come to school without it. her appointment was 9am and i was going to drop at school after. I wake her up to make her ready but Ammar woke up with her, so i try to put him back to sleep and i have no idea what happen. When i open my eyes, it was almost 9:am. So call the Office and reschedule the appointment for Zahra. Wake Ammar up and his ABA therapist came. He got busy and i take care of Zahra. Feed her breakfast and keep checking on Abeerah. She was in half sleep and half awake on her bed. Looks very tired and week. I did some paper work. Ammar was not feeling well and he did not do good with his therapist. After she left. I feed him and then his OT therapist came. While he work with her, I bring Abeerah down stairs and feed her. Change her clothes but she still have no wet diaper. I feed her, Give her medications and give her juice to drink. Make Zahra ready and got dressed. Wake Zarrar up so he can watch Abeerah and Ammar. also need to pick Bilal and get khansa from the bus. Zahra was very happy at Drs. office and run around in the waiting area. Then we send in the room and with not long wait see Dr. Tantawi. I ask many question about Abeerah and Ammar. She wrote some prescriptions and then give Zahra MMR shot. She cry but she got her lollypop, she was happy. Dr. Tantawi send me to her daughter in laws office to check out my back pain problem. I want to go too because i was out there now and when i go home it is so hard to get out the house for myself. I call Zarrar if he can handle every thing. Got green light from him so drove to the DR. office. Zahra was very fussy and cranky in the waiting room because of she had the injection and doctor said it might hurt her for day or two. Dr Mahnaz check me and wrote some prescriptions and also wrote to get an X-ray. Coming back did some fruit shopping. When we getting out the door from the market, Zahra ran and bang her self in to the door hard. Now i do believe strong that she is loosing her eye sight because she is not seeing things front of her. She cry coming back. We came home and there was so much work for me to do. KIds were hungry, Diaper needed to be change and house was a huge mess. I start cooking fast. My mother in law came and stay for while. She watch the the dinner cooking while i feed Abeerah. After i done feeding girls, she get ready to go and took Bilal with her to see some new movie they got for kids. I clean up. Zarrar get ready and left to work. Abeerah finally did poop and pee. in diaper which i was getting to worry about But she felt really burning hot. I gave her medication again. Feed every one. BIlal came back and i help him to do his home work. He was frustrated and sleepy. Some kids are bothering him at school and he wants to change his school. I will talk to his teacher tomorrow. Took girls upstairs and put them to bed one by one. Then Bilal got ready and went to bed. Ammar stay up late jumping and making mess every where he pass by, by throwing thing on the floor. Finally he fall a sleep. I am so happy that Abeerah doing better now. Her dentist office call to let me know that they are trying to set a date for surgery but still did not hear from Audiology dept. to do the hearing test at same time. So i hope to know for sure by tomorrow. Tayyaba.
Tuesday, March 21, 2006 10:03 AM CST
Quick update(Tuesday):- Abeerah did had a nice sleep last night. How much releif is that for us. Her poor body need some rest after so many banging, falling and bumping being very hyper last three days. She woke up again 9:am and crying again since. Still need your prayers for my poor baby girl. I hope this surgery took place as soon as possible.
All the kids are home today. No one went to school becasue i could not able to move this morning due to my back. I make an appointment to see a doctor for my back. becasue if i don't have health then who is goingto watch my kids?
MONDAY Last night i had a very rest less night with Abeerah. Keep trying to calm her down. Keep taking her up and down to find her some comfort. If up stairs she do not feel happy and other get disturb so take her down stairs. With up and down thing hurt my back. Abeerah was so much crying and so uncomfortable. No medication was seams helping her in any way. In the morning i woke Bilal up and make him ready and then make Khansa and Zahra ready. After feeding breakfast and packing lunch, send them to school. Bring Abeerah down and feed her breakfast. She was so hyper and its been such a struggle last three days in feeding and changing her diaper. Its been so heart breaking to watching my sweet little baby in so much pain and so uncomfortable.
Ammar was up early and he was very cranky so i went to bed and put him back to sleep. Then make Abeerah ready for her appointment, get myself dressed and carry her to the van. she was so much crying and so very hyper which make hard to drive. Park and sat her in her wheel chair. Dr. Jackson's office have some stairs and i was kind of putting my strength together to carry her and chair up the stairs but when i reach there i found Doctor in the door waiting and he help me carry the chair while i carry Abeerah. He is such a wonderful Doctor. He check Abeerah, and find the swelling which i thought is a tooth coming out but it is an ulcer. And she is having many many teeth coming in place of her front 2 teeth. They all are jammed up and only solution for that is a dental surgery. Dr. made appointment with a dental surgeon for me then he came out with me and took Abeerah's stroller down the stairs. That was a special treatment from him. Abeerah did so amazingly quiet at Dr Jackson's office. But as soon as we reach to our van, she start crying, struggling, pulling again. I drove back home, Abeerah was so hyper and crying, she almost chock on the seat belt and i had to stop the van in the middle of road to take her out. Came home. Carry her in and gave her medications again. Wake Ammar up, make him ready and give him breakfast. Clean up the living room. His ABA therapist came and he got busy. I get ready to go meet the surgeon. Get directions. Change Abeerah, dress her warm because it was freezing out today and carry her in the van. My mother in law came to watch Ammar and girls when they get home. It was about half an hour drive. Fill papers out in waiting room while Abeerah cry in her chair. Finally we called in. Dr BRAIDY check her. Look her x rays that Dr. jackson send it and took an other X ray. He was surprised that there are many teeth are jammed up together. I stay there about two hours. Dr. discussed about the hospital and related concerns. He think This is not the reason she is crying. He said, none of the tooth cutting the skin yet so that can not cause pain just being up in gums. Then what is bothering her? But she need the surgery sooner or later so we set it up. So i will find out the exact date in two days. Abeerah was very upset when i was putting her back in the van and she was totally out of control. I cry all the way going to her pediatrician. How much person can take watching her child suffering and still there is no answers to it. when i was taking Abeerah out, she need the diaper change and i find out i left the diaper bag home, Find diaper in the van and roll of paper towels. oh boy that was an other story how i did it. She was very hyper and her eyes rolled up. Her mouth got full of white stuff. I never experiance this behavior before. It was some thing new for me and that mad me so scared. After the dipper change struggle when i try to carry her to put in her wheel chair. I heard snap and it was my back. After that i was in extreme back pain. After waiting for while in waiting room. See Dr. Tantawi. She check Abeerah and find out she have redness in her ears. She wire some prescriptions to the pharmacy. We talk about the dental surgery and gave her the forms to fill. Coming back, Abeerah get out of her belt and one time neck got stuck in the belt. I have really hard time driving because of my back pains. Finally reach home 6:p.m..
Zarrar came out and carry Abeerah inside. My mother in law was taking care the kids. After she left, i feed every one. Abeerah did not look good at all. Zarrar went to get the pain and sleeping medications and also antibiotics for infection. He drop them and left to work. I gave her medications. Put every one to bed after Bilal done his homework. Clean up. Abeerah looks weak and drowsy. I carry her upstairs and put her to bed. After little jumping screaming she fall a sleep. Thank GOD for that. I hope she sleep good tonight.
Tayyaba
Monday, March 20, 2006 7:15 AM CST
I had the hardest weekend ever. My heart ache so much for my baby. Abeerah been crying continuously. she cry non stop last three days and so uncomfortable. She is very very hyper. Nothing help her to calm down. She only have 20 minute and one time 15 minute sleep. My arms and my back is in so much pain holding and calming her down. I think her teeth are bothering her. I can not wait for 10am to go see her dentist. First time i wish for weekend to pass fast. I hope we get some answers today and help my poor baby out. It is so hard to watch my daughter in so much pain.
May GOD take my Abeerah's pain away and give her comfort And some rest. Ameen.
Please keep her in your prayers and i will update soon.
Friday, March 17, 2006 6:55 PM CST
Need special prayers for Abeerah. She is not feeling good at all. She been crying a lot past two days and hardly sleeping at night.
WEDNESDAY After having a very little sleep at night due to Ammar, and Abeerah was up most of the night. Abeerah not feeling good these days. we can not find what is bothering her. Ammar going through some behavior issues these days. He was very cranky last night. He took every piece of clothing out of dresser's drawers and throw on the floor. I keep folding and putting back and he was keep putting back out with his tantrum issues.
After sending Bilal to get ready for school, wake Khansa up. Abeerah was already up. Make both of them ready. Bring them down stairs. Make lunch ready for Bilal and Zarrar took him to the bus stop. Gave Abeerah medications. Zarrar came back and help me put both of them in the bus. Zahra had a Physical evaluation appointment so she was stay home today. She missed school Monday and Tuesday too because she was not doing well. I was so tired and just want to go back to sleep due to not having good sleep in couple of days but can not miss this appointment today since we already cancel 2 times and her school think she really need to start physical therapy since her balance is not good and she is falling a lot.
Wake Zahra and make her ready, feed her breakfast and i went to get dress while Zarrar play with her. It was very cold and windy out side. Zahra do not like cold wind on her face and she start crying when we had to walk to the building. We reach there kind of early, I was surprise because i am mostly late on appointments. But that give me some time to talk to special Ed teacher for the new Autistic program they start for placing Ammar. I want to start my research on which program will be good for Ammar from now even there is still 8 month till he will turn three because Zahra had to wait six months when she turn three because i did not register her earlier for placing. I had my lesson learned.
Zahra was keep pulling me out of the chair the whole time we had to wait. She want to get out of there. Miss Jennifer came and took us in physical room. There was lot of toys and all kind of equipments. It was so heart breaking for me to watch Zahra. I was so surprise watching her falling every other minute. At home she know her ways but at new place, she was keep bumping in to stuff and any thing higher or comes in her way make her trip over. she do not look where she is going. I want to cry out loud watching my baby who use to climb with no problem any thing come in her way. She use to jump over 4-ft hight fence to be on the street. This MPS really take over my baby too fast. Therapist recomended to check her eye sight too becasue she seems not having a good vision. After we done there, i want to say hello to Bilal's kindergarden teacher which happen to be in the next room. We say hello to her and the class. Zahra get to eat some popcorn with the kids while we chat a bit and talk about Bilal. My plan was to drop Zahra to her school after her evaluation but i was so sleepy to drive so came home. Ammr was up and playing. After his diaper and dress changing, Give him breakfast, made him ready. I want to drop out steam cleaner( carpet shampoo machine) to fix it. I can not go day without it since kids always have accidents here. Its been leaking and i have so much trouble shampooing. Put Zahra and Ammar in the van. Zarrar bring the machine and we drove to sears repair center. Finally finally we drop it to fix it. i been using leaking tank for while and it is not fun. I hope they do it fast because i am always in need of it. This steam cleaner is life savior to me since my 4 kids have taking their diaper off habit.
Came home, clean the living room. Ammar's therapist came and i went to lay down for second while waiting for the bus because Abeerah, Khansa had a early day off today. I was tired and fall a sleep. Dina(Therapist) wake me up when bus came, Bring girls inside and make them comfortable and gave them juice to drink. Then went to pick Bilal up from his bus stop. Zarrar went to home dept. and coming back he pick some fish sandwiches for every one. I feed every one. Ammar Therapist came. he fall a sleep during his session. ABEERAH WAS NOT FEELING GOOD AT ALL. She keep jumping and secreaming. Gave her medications. Then just relax while girls watch TV. Cook dinner and feed every one. Help Bilal with his home work and make every one ready and put them to bed. Ammar and Abeerah stay up late. Abeerah was not happy and Ammar was cranky then we all went to sleep.
THURSDAY. Woke up late and start rushing to make kids ready. Abeerah was not feeling good and look very upset so i kept her home. Khansa, Zahra and Bilal left to school. I bring Abeerah downstairs and give her soy milk to drink. Give her pain medications. Wake Ammar up. He do not like to be waken up and he was cranky. He had a busy day with his therapist today. His ABA therapist(Kristen) came 8:45 and then other ABA Therapist(Pam) and case worker(Amy) came and they evaluate him and set his goals up. He stay very busy with therapist till 1:pm. Abeerah was so loud crying and screaming all day long. I gave her medications, message her but nothing make her feel better. I call her dentist to make an appointment to look at her teeth, May be that is be bothering her but dentist was not there till Monday. Make her appointment for Monday. Went to get Bilal from his bus stop. It was really cold. Came back and give Abeerah warm bath for hour. That give her some relief and she fall a sleep for couple of hours. That give me time to do some cleaning. Receive Zahra and khansa from buses and take care of them. Drop Bilal for his class. Ammar fall a sleep so i cancel his DI therapy. Cook dinner and went to get Bilal. Abeearh start crying again. Feed her dinner and give her medications in her bed. Zarrar eat and left to work. Feed Bilal, Zahra and khansa. Make them ready to bed. I was feeling really tired and my body start feeling warm. I felt i am having fever. Ammar woke up, feed him and help Bilal with his home work. Then he went to bed. By then i was burning up. Ammar keep me up and keep making mess all over the house. Abeerah get up couple of time. I keep checking on her. By 2:am, I wash all the kids glasses and lunch boxes and clean up the kitchen and went to bed and Ammar came and fall a sleep next to me.
FRIDAY. I had a fever and felt really tired. My body was in so much pain all night long. Woke up early with Abeerah's voice. Stay in bed till my Alarm turn on. Send Bilal in the bath room to get ready. Wake Zahra up, give her bath and make her ready. Make Abeerah ready. It was hard making her ready when she was so hyper and fast. She keep trying to reach every thing she can see and with a flash thing are on the ground. Took every one down stairs and give them milk to drink. Make lunch box ready and put shoes and jackets on. Give Abeerah medications. After every one left to school, i just went straight to bed and fall down. Ammar wake me up but could not able to take care of him, poor boy keep playing next to me till Zarrar came back from Jumma and feed him. Then Zarrar went to get Bilal and he received Zahra and then Abeerah and khansa from the bus but when he bring them in and Zahra took her diaper off then Zarrar got panic and start screaming for me. I ran down and start taking care the girls.
Abeerah was not happy at all. School send the note that she did not feel well today, They took her to Nurse but she do not have fever. She keep crying all day at school. I give her medication, change her clothes and diaper and did every thing to make her comfortable. But nothing help her. She was very uncomfortable. Zarrar took Bilal out because he was getting upset with the noise. My mother in law came and she put a pot of soup up for me. She got upset looking Abeerah crying. It was so hard for me to even stand but i have no one to take care my kids. Feed Abeerah but she was not swallowing the food. Keeping the food in her mouth but reach for more food. She taking her head all the way back till touch her back. He eyes keep rolling up and she was in her top of her voice. Zarrar think it could be some term of seizors. I never had this situation before. I try every effort to keep her calm. Ammar therapist came and teach him for hour. After feeding Zahra and khansa. I put them to bed. Bilal went to bed too and he was very exited for saturday. Abeearh stay up till 2am. Then she fall a sleep. She had a really bad day today. I am praying she feels better tomorrow and me too.
Zahra school have a party for St., patrick day. She wear green clothes today and she bring many green toys home. She was very happy today.
FRIDAY. Woke up early. After my prayer, start with Bilal and send him to get ready. Made his clothes ready fro school. Wake Khansa and give her quick bath, dress her and bring her down stairs where Zarrar took over to give her glass of milk. Then wake Abeerah and give her bath and after dressed her, took her down stairs. Bilal get ready and went in the kitchen to eat his breakfast. I mad Zahra ready. Made lunch box and school bags ready with diapers and extra clothing and all the notes send to me for sign up. Zarrar took Bilal to bus stop and i put Zahra in the bus. Gave Abeerah medication. Abeerah not been feeling too good lately. she is very hyper and making so much noise all day long. School wrote me note that she is not want to stand at all and do not want to do any thing. She been not sleeping good at all. Abeerah and khansa bus came and Zarrar help me putting them in the bus. After some cleaning, i went to take some rest. woke up when Ammar woke up. Make him ready for his therapist after his breakfast. But his ABA therapist did not make it. Zarrar get ready for Jumma Salat. I stay home because Ammar do not let me pray there and keep running around there.
Went to get Bilal from his bus. He came happy, he had a good bye party for a student at school because one of his class mate is leaving to other state. Then Zahra came. She was very upset. I think Bus driver wake her up from her sleep. Abeerah and Khansa came home. Abeerah did not stand at all. She kept her legs bend and did not make them straight. I make her lay down on sofa. After giving every one juice and making them comfortable make Bilal ready for his class. drop him off. Cook dinner. Made Bilal's favorite pizza. For girls made soft and very mild pasta. Went to pick up Bilal but as usual he try to run in the parking lot and almost going to hit by a car backing up. That took my breath away. I been working so much on him to walk on the side walk but all the boys after class just race to their cars. I hope he learn his lesson after having NO TV for two days. After feeding every one. wake Zarrar up. He get ready,eat and left to work. Anna came to teach Ammar. Ammar been very cranky fro last 3 days. He did not pay attention to any therapist and keep banging his head a lot. Anna was worried that he is going backward. I been really upset about him already and this made me more worried about him. But later when i was singing to Zahra I love you and i heard Ammar say it say so clearly "i love you" I was so happy. This is the first time he said that so he definitely not going backward, Just having some bad days.
Made girls ready, took them upstairs and put them to bed. Zahra cry and cry. She was very upset. i sing to her and rock her. Then put her to bed. When i turn back down stairs, Ammar took his diapper off and make a mess for me to clean. Clean that up. Then went in the kitchen and wash dishes while Bilal clean the floor. He is my big helper. He been want to use the new mop so much and today was his lucky day. After we done in the kitchen. Bilal, Ammar and i did some exercise. Ammar was so cute trying to copy us. Bilal went to bed then Ammar after taking his bottle. When i went to bed, My back was in so much pain, I could not stand, sit or lay down. Then Abeerah woke up about 1am and start screaming. She stay up for hour then fall a sleep again. I went to bed very late.
SATURDAY. Did not want to get up today. Poor Bilal woke up and try to push me out the bed so much. Then Zarrar came to tell me that girls are up. I ask him if he can them downstairs, So he did. Finally when Ammar start jumping on me so i have to be up but i was so tired. My whole body was in pain. One because of exercise and other because of restless sleep due to back pain. well start the day because there is no day off here. Clean the girls and give them glasses of milk. Lilly did not come like always with out even calling to let me know. Make breakfast and feed Ammar first while Bilal get ready. Bilal wants to eat left over Pizza and i feed Abeerah, Khansa and Zahra. Got dressed and drop Bilal off at Adrees's house(for big brother program). Coming back stop at meet store and get some chicken for B-B-Q. Weather was so beautiful. I came home and every things was not right. Zarrar fall a sleep.....Ammar was running around with out diaper and Khansa was crying because Zahra try to took her hair bands off of her head. I try to make every thing under control. Then change diapers, bring meet inside, put it away and wash a load of laundry. It was about time to get Bilal. it was nice out and i want to take kids out beside Zarrar was sleeping and there was no one to watch them so i made each one ready, carry them to the van and fasten the belts. Get Bilal and chat a little bit with Adrees's Mother. She came out to see the girls. Driving to the park with pond but Bilal wants to go to the one with jungle jim. So i stop there and took Bilal, Ammar and Zahra out. Zahra ran straight in to the mud pond and get dirty. Ammar climb on some steps to take a slid but sat on the middle step and start crying out loud. I don't have any idea what happen to him because i was holding tight on Zahra so she do not run away. It was crowded place, Zahra was dirty and trying to run, Ammar was crying out loud, Bilal disappear from my sight and people was staring at me. OH MY. i almost scream for Bilal, Carry Ammar and hold Zahra hand and drag my self out of there. After putting them on seats i drove to my mother in law's house to drop Bilal off as i promise him and want to take the rest of the kids to other park. When i pull there in their driveway, they were leaving some where. Find out they are going to same park. My mother in law ride with me and Bilal went with them to ride with his cousins. They were going to the zoo area but i want to be at the pond with ducks.
Due to the nice weather first time after very messy and cold days, Every one was out on roads today. Finally park in one spot and take girls out. put them on the bench right front of water and belt them there. Make each one walk for while one by one. Ammar enjoy watching the ducks. He and Zahra had a great time. Abeerah and khansa was quite and watching kids and people walk by. This is our fevorite palce. I been coming here for long time with kids. It is easy for me becasue parking is two step away and kids enjoy watching ducks and many dogs passing by with joggers. I love watching sunset here. After sunset, i drove home. Bring girls inside. When i was bringing Abeerah in side in last, she was walking but when i try to close the door behind and let go of her hand for second but she could not stand on her own and fall on the ground. Poor girl cry and cry. It hurt me so much. So that means she having a weak legs once again. Girls were very hungry and in need of changing. First change them. My mother in law was with me and she help me wash dishes and i made sandwiches for girls fast. Feed every one. Give them drinks with genestein, folic acid and other vitamins.
Marinade some meet and chat with my mother in law. After she left. I cook dinner. Zarrar came back and bring Bilal with him from his cousins house. He had a great day. Make girls ready to bed, they were very tired. Abeerah again wobbled when i was taking her upstairs and had a two step stairs fall with me but this time she was on top of me. Then I carry her up stairs to her bed. She fall a sleep fast and so is Khansa and Zahra. Bilal, Ammar and i stay up little late doing nothing. Then Both boys fall a sleep but i could not sleep all night. Abeerah's suffering and my back pain is bothering me.
A little girl ADRIANA lost her battle of life fighting with MPS-1. You can visit her journal hereADRIANA'S JOURNAL
Tayyaba Beg.
Wednesday, March 8, 2006 11:31 AM CST
This week passed very busy as usual. I start Genestein, all the vitamins and soy diet back again with girls. I am trying to keep it up with every ones medications schedule.
Abeerah been in lot of pain. Her knees and back is hurting a lot. She is on pain medication for her joints and i also start adding Flex seed oil and fish oil in her diet to help her joints. She is also having sleeping problem and hardly sleep hour or two at night. She is very hyper all day long.
Khansa start biting and chewing on her fingers. She continuously doing it all day. she start drewling a lot once again. I change couple of her shirts a day.
Zahra having a some stomach problem. She cry on her usual night hour but happy during the day.
Ammar have a cold and runny nose. He been very cranky and keep hurting himself. He is banging his head a lot out of his fustration on any thing he can find. Also not sleeping much at night. His ABA therapy start this week and we hoping and praying that help him.
Bilal been happy this week. He love to meet new friends from noor-ul-Iman school.
OUR SPECIAL THANKS GO TO 8th GRADE STUDENTS of NOOR-UL-IMAN SCHOOL FOR ALL THE HELP AND SUPPORT THEY BRING IT TO US. AND TO THEIR PARENTS FOR MAKING THIS HAPPEN.
SATURDAY. I woke up 7am, little late than usual time. Start with taking care Abeerah, Give her bath and dress her. Bring her down stairs and give her milk to drink. Zahar was already up and watching Barney which Zarrar put it for her. Lilly came over to help with laundry. After giving all the laundry to her, i went back up to bring Khansa. give her bath, dress her and bring her downstairs. Took Zahra up, give her bath and get her dressed. then Bilal get ready to go to Adrees's house. He made his tool box ready with toys to show to Adrees. I made and feed every one breakfast. Then clean up the house with Lilly. Ammar woke up and i bring him downstairs after changing and washing. Gave him his bottle. I got dressed and drove to drop Bilal off to Adrees's house. His mom call me in and we chat a bit and drink tea. Then i went to get some groceries. I did not shop about over a month and i was out of every thing. My refrigerator was so empty. I bought fruit, vegetable and other needed groceries for now and came home. Girls were crying and in need of diaper change. After putting groceries on the kitchen floor, i get busy with girls and Ammar. Change them all and feed them quick cook oat meal. After making them comfortable, i did put the groceries away. I receive phone call from Suzanne that team of Noor-ul-islam school have left. I was so exited to meet them. They were coming for voluntary help that 8th grade student decided to do. And they wants to give me and Zarrar a break. I was looking forward to go out for change. Zarrar clean the ice from side walk and i did some cleaning. Then i left to get Bilal. After get him in the car i drove fast home. Bilal was so happy to see couple of cars outside. Some kids team with adults were already at our house. I love meeting them all. Boys and one of Adult took Bilal to chukee cheeses. After giving some instructions about girls, we left for our fun DATE. We went to my in laws house and meet one of the family friend who were visiting there then we took off and went to the mall. Walk around and did some window shopping. It was nice to be out with him. I felt like without kids some thing was missing but did feel light without pushing three strollers. At Sharper Image, I check out the soft shoes that Zarrar been want me to get for my feet and back pain, and the soft mattress and the soft pillows for me to check out to have better sleep for back problem people. When i saw the time, it was over of our limit time so i got panic. I start running toward the packing lot. Next thing we were in the car. Way back we got coffee and reach home. Every thing was fine. Abeerah and khansa looks they had a great time. Zahra and Ammar was happy too. All the kids from Noor-ul Iman school looks tired. They all get ready to go when Pizza arrived. After eating, every one say good bye and left. Bilal was so happy and he start telling me his exiting time with boys. I change diapers and feed Abeerah, khansa and Zahra. Ammar love pizza, he climb on the table and start eating him self when i was feeding the girls but make mess all over the table and chairs. I clean him then clean up the pizza from table and chairs. Then make girls ready to bed and took them one by one to bed. Zarrar did not have any sleep since he came from work this morning so he fall a sleep and so is Bilal after having a busy day. Ammar stayed up late. After some cleaning i went to bed but Ammar stay up for while. Before i could close my eyes, Abeerah woke up and start screaming. I rap her in blanket and put her back to bed. After i went to sleep myself.
SUNDAY. Woke up late and girls was already up and making noises in their beds. My poor babies. They are so dependent on me. Zahra was up and jumping around. I put TV on and she got exited. Then Bilal woke up. After he get done washing his face, i took care each girl with their morning needs and bring them downstairs. Make breakfast and feed them. Give them milk to drink. Make Bilal ready and drop him at Musjid for sunday school. Wake Ammar up and feed him breakfast while Zahra was crying out loud. I gave her some thing to drink. Then went in kitchen and clean up the breakfast mess and cook dinner. Zarrar went to get Bilal. Gave medications and vitamins to Abeerah, khansa and Zahra. Abeerah was very fussing and unable to sit in one or any position. After i done feeding every one, My husband told me that his family coming over in regard of doing some taxes. I change girls quickly. Bilal was so happy to see his cousin. We sit and chat around, drink tea then coffee. Zahra was so happy to see people around. She use to play with the kids and use to chase them around but now she do not know how to be with them. It really hurt me when i have to face that Zahra is not the same girls any more like she use to be. She use to serve guest with goodies. After every one left, i give girls some fruits salad and then their warm soy milk with their medicatios. Make girls ready to bed. Abeerah, Khansa lidown on their beds but Zhara keep walking around in circles. Zarrar get ready and left to work. After cleaning the kitchen, we all came upstairs. Put kids to bed. Zahra cry for while and fall a sleep. I did some writing on computer and then fall a sleep.
MONDAY Zarrar woke me up when he came back from work. His eyes were in lot of pain and he hardly keep his eyes open. He told me that he is not any help this morning. His eyes are bothering him a lot. i wake Abeerah up. She was full of poop and messy head to toe. I carry her to the bathroom give her bath while Bilal get ready. After dressing Abeerah, wake Khansa up and she had the same situation with poop. I did not understand why both together. AMy be its the new medication we start. That was the reason i stop it before. After giving her bath and making her ready. i took them downstairs when i heard Garbage truck passing by. I took the gathered garbage and ran out side. They already passed two more houses. I ran after the truck with my garbage bags and make the guy stop the truck. He took the bags from me and ask if i have more, which was yes and that was the reason i ran because my all four garbage cans was full and there was no more room to put any more till their next pick up in three days. Poor guy back up the truck and i place garbage stickers on the bags which was the reason they did not pick the garbage in first place. Zarrar usually place the stickers when he come from work in the morning. Guy took all the garbage. I thank him and ran inside because i was so late already and buses about to come. Ran back up stairs and wake Zahra. she give me hard time when i wash her face and brush her teeth. She do not like to be waken up. She is happy when she is up on her own. After dressing her, i bring her down stairs. Put shoes on her. went in the kitchen, give warm milk to every one. Make lunch box ready. Zarrar took Bilal to the bus stop. then Zahra bus came and she left to school. Make Abeerah khansa ready with Jackets and warm hats on. After both left. I made tea and we both drink it. I took some rest while Ammar was sleeping. Then Ammar woke up. I take care his needs. His therapist came to start new therapy on him. i went to get Bilal from bus stop. Then Zahra came and then Abeerah and khans came back from school. Abeerah was not happy at all. she was crying. I gave her pain medication and make her comfortable. After Bilal done eating, make him ready and drop him for his class. Ammar speech came and he got busy with her. After feeding every one. Zarrar left to work and i start making kids ready to bed. Abeerah and khansa went to bed and fall a sleep fast. Bilal and i read books from library and then he made me do some exercise. He wants to make me stronger then We play reading game while Ammar keep taking his diaper off. I clean up the kitchen. Make sure all the girls glasses and luch boxes are washed for morning and we all went to bed.
Tayyaba
Friday, March 3, 2006 10:38 PM CST
This week went by busy like always. Some thing always happening here.
Abeerah did not feel good at all. She have very restless nights jumping and screaming all night long. Her knees are in lot of pain and joints locks up when she don't move for while. She hardly slept in last seven days. I am giving her pain medications with hot baths to sooth her joints and keep her calm.
Khansa is doing good. She is happy, laughing and sleeping well this week. Her choking is much better since I am giving her soft foods and little bites.
Zahra have her usual crying at every night. She call me MAMA couple of times and hug her barney again that she did not touched for long time.
Ammar have some noticeable improvements. Her therapists are happy since he start sitting the whole session. He starting a better eye contect. He start saying some words but still do not know where to use them.
THURSDAY. Wake up early when Zarrar's ring a wake up call after only having little sleep. Abeerah been very very hyper and jumping around all night long. Zarrar came home and told me that he can not help this morning because he have to leave to go to his work meeting. So i have to move fast to cover every thing by my self. Wake kids up. Our sink been clog so i have to wash every one face in the tub. Oh man oh man, what a experience i have struggling during brushing teeth and washing faces. First make Abeerah ready then wake Khansa up and make her ready then Bilal start getting ready when i try to wake Zahra up. She is not happy when she woken up. So she is not happy getting ready. Bring every one down stairs. Give them milk to drink and make breakfast and make lunch ready. Bilal have a green egg day at school and he have to take green scrambled eggs to school. I did not have green color so i crush some peas and put in the eggs. It looks some kind of green. Put shoes and jackets on girls. I was ready to take Bilal to the bus stop but his nature call and he have to run to the bath room. Well he missed his bus. After Zahra left in her bus to school. Me and Bilal wait and wait for Abeerah and khansa's bus but did not came so call the bus company and find out due to storm coming, school is closed. I did not know any thing about the snow storm so turn the TV on and watch the news. Bilal wants to go to school because they have Dr. sues Birthday celebration at school. I make girls comfortable taking their shoes jackets off and put Barney on. Get dressed and tell the neighbor. Way to school get some snack for class which was due today and drop him off at the cafeteria where they are going to have green eggs. Coming back it start snowing. Snow was coming really hard. Came home. Make breakfast. Zahra school call that they are closing early. social worker came and we talk on different things for hour and half. After she left, Wake Ammar up. His speech therapist came and he got busy. Feed Abeerah and khansa. then Zahra came home. It was really bad weather out side and cold. I ran to get Bilal from bus stop but his bus came late and i freeze up standing out side. Bring him Home. clean the cars and park them on drive way so road can be clean up. Cook Dinner. By evening I was getting worried for Zarrar because weather was getting bad for driving. I thank God when he reach home OK. Did not do much except changing diapers, feeding every one. Talk to Petty for while and ask him about the medications and about Autism. Then Make Abeerah and khansa ready to bed And put them to bed. Zahra start crying and walking around while i help Bilal do his home work. Bilal went to bed and also Zhara was sleepy so put her to bed. Did some paper work for schools. Ammar was getting cranky so make his bottle and we both went to sleep. Wake up hour later with Abeerah's scream. she was jumping and screaming. MAke her calm down, press he legs and back and put her back to bed.
FRIDAY. Zarrar came back from work and wake me up but i did not feel good. I have bad head ache and my back was in lot of pain. I could not get up to make girls ready. It was freezing cold too and its better if girls don't go out because they get sick quick. could not send any one to school. Also cancel Zahra's appointment with Physical therapy evaluation. Feel better after taking pain medication and then i was able to take care girls morning needs. Make breakfast and feed every one. Did not do much than usual cooking, cleaning, diaper changing and feeding. Ammar's speech therapist came. Drop Bilal for his class. Zarrar left to work. Lilli came and help me with mountain of laundry. Since girls new diapers are leaking so much, I end up changing many pants a day and whole bedding need to be change every morning. That end up so much to wash. After feeding dinner. Make girls ready to bed. Clean up the kitchen. After some reading, send Bilal to bed. He is so exited that tomorrow is saturday and he is going to see Adrees(big brother program) and some friends are coming to see him from Noor-ul-Iman school. Saturday is a very busy day for me. I hope Abeerah get some sleep tonight.
Tayyaba Beg
Sunday, February 26, 2006 6:29 PM CST
Khansa start choking during feeding time. I am giving her small pices of food but now i will put her only puree kind of food. Abeerah start having a little swallowing problem. She is taking a longer time to push her food in her stomach.
This week went really busy. Kids been home for winter vacation and i was trying to put up some event for MPS DAY. Wednesday and thursday did some shopping for event from Staple and craft stores to make board, flyers and signs. Husna came by thursday night to make the board. I did not got my shipment for ribbons so i made small awareness ribbons myself and Husna help me make the board. After putting girls to bed i prepare for every thing ready to go.
FRIDAY. I was invited to ISLAMIC CENTER OF CENTRAL JERSEY by Suzanne and her group of sisters for MPS awareness. Because of my migraine headache and Abeerah been hyper and did not slept much at night, Things turn slower than i planned. I gave 3 girls and 2 boys bath and dress them all. After drying and combing their hair. Make breakfast and feed every one. Put barney on and i went to get ready. I got dressed. Make bag ready with extra clothes for each one and lots of diapers. Put shoes and jacket on every one. Then start loading every one. Weather was cold and windy. I left the house 11:30am. Get some gas in the van and hit the highway. Kids did great in the van. Wind and my head ache made driving little hard. Stop once and change diapers. I follow the direction and we reach there 12:40am. Ladies came out and help me out with girls and other stuff. Bilal went with boys. All the people were so nice. Every one was so helpful. After girls got little settle down. Suzanne help me set the table. She made a very nice board of her own with MPS and some girls information on it. I went to pray and some sisters feed the girls and Ammar. It was the nicest thing ever happen to me. No one help me feed my daughters. THANK YOU. After prayer, People went to the table and read the boards and took information. People took the purple ribbon and put on their shirts. We bring Abeerah, khansa and Zahra out. People was hugging them and talking to them. Lots of ladies came to me and said prayers for me. It was so beautiful. It bring tears in my eyes. I see people who did get sad and some did have tears in their eyes. After most people left the table. Ladies bring the table in the big hall. Zahra, Khansa and Ammar run around. Every one helping them. Then 8th grade students came there with there teacher to meet my family. I really enjoy meeting the boys and girls. they were so curious to know about the girls. Bilal play with the boys. He was so so happy with them and keep chatting with them. I did some diaper changing. Bilal went out to play in the play ground with boys. Zahar gave almost every one hug. She was so happy and so is Ammar. I did hold him for a minute. school children play with him. I felt really good with really nice caring people.
Made every one ready to get back home. I got help to put every one in the van. It was sad saying good by to every one. Time passed real fast here. Way back, it was real rush on the roads. It took lot longer for us reach home. Stop and get some food because very one was very hungry. Reach home safe. Bring every one inside. After taking shoes and Jackets off, feed every one. Clean up the house. Then made every one ready to bed. Abeerah and Khansa was tired and they fall a sleep right away but Zahra stay up late and so is Ammar who slept all the way home. After every one fall a sleep. I made things ready for the table at the mall tomorrow. Finish the banner. Place every thing in the box. Abeerah woke up and start crying. After take care of her and try to put her back to sleep. Then i went to bed at 4:00am.
In honor of National MPS Awareness Day, the National MPS Society rang The NASDAQ Stock Market closing bell along with representatives from BioMarin Pharmaceutical, Genzyme Corporation and Shire Human Genetic Therapies. You can see the pictures at NASDAQ WEBSITE
Woke up after only couple of hours of sleep because Abeerah and Khansa was up And i was so exited for the table at the mall. After taking care of girls needs, i bring them downstairs. Lilly came and help me out with laundry.
Then Hunsa came to took every thing for the table. Hunsa is an amazing girl. She help me out so much last couple of years. I do not know what i would do with out her. Today's event was happening only with her help.
Plan was this that she will set the table and then i come there with the girls later. I help her put stuff in her car. We want to hand out balloons with girls syndrome on it but helium tank was low. So zarrar left to get the new one and way back he drop Bilal at my mother in law's house. I dress the girls in purple. Dress my self up also in purple. Put shoes and jackets on them. Lilly was leaving so she help me buckle up every one in the van. We reach there but did not find parking. It was really full and cars were keep going in circle to find parking. Zarrar came out and we unload girls and Ammar on their push chairs. Took then inside by the table. Table looks very nice. Elaine also came to help. Zarrar and i look for parking and park the van not far from the entrance.
Mall was very busy. Some people did came and look around the table. Some were very rood and some are very nice. Some try to talk with girls and some just not happy to see us there. Some were sad to know about MPS and some did not even bother looking this way. We give out ribbons, flyers, bracelets and some information about MPS. Husna and Afeera help out handing out flyers, then Qaisra join us. We were placed right out of macy's entrance. There was carousel closer by. Lot of peopel were there. Abeerah, Khansa and Zahra did so well. I could not believe that. They sat so nicely and keep looking the peoples going by. Ammar was hyper and want to walk around. Elaine took care of him. She walk him around till he got tired and fall a sleep in his stroller. I bought some snack and feed girls. We rap the table up by 4:00pm. It was good time because girls start getting cranky and hyper. Put every thing back in the van and buckle girls up. Say thanks and good by to girls who help us out in making people aware of MPS. I hope all of our hard work did made some popel aware of MPS illness and hope they will try to make the difference. I hope they give their support to find the cure.
In the way back home i drop Zarrar off to his Mom;s house so he can get his car and pick Bilal up. I came home, Bring girls inside. They were tired, hungry and need changing. I got busy, First took shoes jackets off, then change diaper and clothes. Then feed them left over foods. Then out barney on and every one was happy again. I bring all the boxes inside. Clean the living room. Gave medication to girls and make them ready to bed. I was hoping girls will sleep due to being tired but zahra start crying and then Abeerah join her. Zarrar came back with Bilal. They both sat on on the computer to find something about fish. Fish is a really warm topic in between both of them. And those fish we have are having a special treat these days. Zahra went to bed then i work with Ammar but he was very hyper and jumping around. Bilal made pop corn and we watch some TV together while Ammar was playing. After both boys went to bed, i went to sleep too. It was really busy day.
Saturday, February 25, 2006 6:03 PM CST
In honor of National MPS Awareness Day, the National MPS Society rang The NASDAQ Stock Market closing bell along with representatives from BioMarin Pharmaceutical, Genzyme Corporation and Shire Human Genetic Therapies. You can see the pictures at NASDAQ WEBSITE
HAPPY MPS DAY TO EVERY ONE.
Please take a purple ribbon from us and wear it to show you care. Also if you can dress some thing in purple to show your support. We really appreciate your support and care.
Sunday, February 19, 2006 1:52 PM CST
This week went as busy as could be. Lots of Doctors appointments and Ammar's evaluation to get more therapies for him. Genetic Appointment with Dr. Wallerstein went well. He also took some blood and urine to do more testing on him.
Ammar did not feel good this whole week. First he had a fever for two days. Then it turn in to coughing and runny nose. He been very cranky.
Khansa came home from school sick on Thursday and by night Zahra and Abeerah catch it too. Friday girls stay home and only Bilal went to school.
Zahra give me really hard time when she is sick. She was crying a lot and bad runny nose all day Friday. Abeerah stay quite most the time and stay lying around.
Khansa also had diarrhea and she went through plenty of diaper change plus clothing change. New Abeerah and khansa's diaper not good at all. They both leak out on each diaper change and i have to change every cloth on their body on each time they go. Which ending up so much laundry. Lilly came to help on friday but she was sick herself so could not help me much. I am keeping up with 4 sick kids medications timing. Giving medication is an other big test with these girls. Zahra and Khansa spit right out. Abeerah do not swallow for long time and keep in her moth and when she do, she always choke on it. Zahar slept late and Abeerah did not sleep Friday night and keep jumping and screaming all night long.
Saturday Every ones fever went down but runny nose is still there. So much of Kleenex tissues needed here. Khansa and Abeerah need antibiotics because for runny nose there none of medication will help them. It turns from clear to green and then bloody in two days. I call the Dr. but they were closed so i need to wait till Monday to see a doctor.
Whole day went very busy. Ammar is too much boy and keep me on my feet. He is in to every thing. He climbing on to every cabinet we have and nothing is safe from him these days. Bilal count the days whole week to see Idrais(Big brother program). Zarrar drop Bilal to his big brother Adris' house and i pick him up and way back i get pizza. Girls love pizza. We all eat. I did some laundry and cleaning. Bilal help his father cleaning the fish tank. We having a some problem keeping the tank looks clear. water looks so foggy and Zarrar trying every thing he can. Girls went to bed late. Ammar stay up till 3-am and he was very hyper jumping here and there. After checking on every one and covering them with blankets, i went to bed. Next whole week is winter vacation and every one is staying home for whole week. That mean so much of every thing for me. I hope weather stay nice so i can take them out because girls get really cranky and noisy stay at one place.
MPS awareness day is this saturday Feb 25th. If any one have any idea to do some fun that day in honor of the children suffering with this disease and who lost their lives already, please contact me.
Please take a purple ribbon from us and wear it to show you care. Also if you can dress some thing in purple on saturday to show your support. We really appreciate your support and care.
Monday, February 13, 2006 10:29 PM CST
Last two week been really sad for us. My little baby Ammar got diagnose with Autism. That really break me so much. Every thing just made me cry. Day passes being busy but at night all the tears just like waiting to come out. It just hurt so much. Its like some body stab me in my heart and its bleeding so much. I feel like i never be able to get over with this pain. But i am sure i will learn to live with this Autism. It will just take time. I have to put my faith together. I know GOD test those HE love. HE made me go through lots of tough times. I just need more strength from HIM. I been reading a lot about Autism and from some parents and Drs., i learn that with therapies and age, Autistic children do learn to communicate. So Ammar having an evaluation from early intervention to increase his therapies. He start sitting through the whole hour of speech and OT. He is banging his head little less than before. Also he is babbling so much. So there are some good sings And i am hoping for great ones to come.
Abeerah and Zahra have sleeping disorder whole last week.
Abeerah not sleeping well at all. She stay up all night and jump and scream all night long. Her teacher also send me note that she is not feeling too good in school and feel very uncomfortable. I am giving her pain medication for her back pain and also give her warm baths to comfort her.
Khansa doing good. She been very happy. Eating well and sleeping well too. She love watching sports. She loves hugs and singing to her. Some times she laugh so hard for hours.
Zahra cries every evening for about two to three hours. She walk up and down stairs, around the furniture crying. We can not find what is bothering her. Also wakes up middle of night and start jumping on the bed. Keep chewing her clothes and made holes in all her shirts. Make continuously clicking noises. She having a loose diareaha lately. And i know she is going in to a different phase of MPS. MPS really stinks. It turns my beautiful loving daughter in to this. It just break my heart so much.
Bilal been doing good other than some angry moments. His report card came and it is great but do need practice in his handwriting. Giving me so hard time doing his home work.
THURSDAY. woke up 5-am with head bump from Ammar. He woke up early and start banging his head in my stomach. I did not understand what he wants. I went through every thing with him but he did not like any thing just been upset and cranky. I did not had his soy milk and Zarrar was going to bring it when he comes from work. By 6-am i get dressed and pray. Zarrar came from work and Ammar got his milk bottle. I wake Bilal up and make him ready for school. Then wake abeerah up and take care her morning needs. Then wake khansa up and make her ready for school. Zarrar took both of them down stairs to give them breakfast. I wake Zahra up and make her ready. She looks happy this morning. After bringing her downstairs. I put shoes on every one. Make lunch ready and make Bilal's bag ready. After his breakfast, Zarrar took him to his bus stop. Then Zahra bus came and she left fro school. Then Abeerah and khansa bus came. Zarrar help me to put them in the bus. Then they goes to school. Ammar was up and running around. Make breakfast and enjoy eating it with Ammar and Zarrar. Zarrar start testing the fish water because the tank have ammonia level been going really up which is dangerous for fish. I took Ammar and try to put him to sleep. After he fall a sleep, i did some cleaning and laundry. Then it was time to pick Bilal from his bus stop. Then Zahra came from school. Ammar's speech therapist came and Ammar got busy. Abeerah and khansa came back from school And today is a third day in a row Abeerah came in poppy diaper. Take care of them and give them juice to drink. Make Bilal ready and drop him for his QURAN class. Came back, cook dinner and wake Zarrar up to go to work. Pick Bilal up while Ammar Teacher work with him. After DInner Zarrar left for work and i feed every one. Make girls ready and put them to bed. help Bilal with his home work while Zahra run around crying. I clean up the kitchen and we all went to bed.
FRIDAY. Abeerah hardly had couple of hour sleep. Rest of the night she just jump on her bed. At 6:00 i start waking kids up for school. Bilal did not want to get up and want to stay home. Give all three girls bath and make them ready. After breakfast and packing lunch girls left to school in their buses. After giving breakfast to Zarrar and Bilal wake Ammar up. Make him ready and feed him breakfast. Give Bilal hair cut and he had fun in the tub with Ammar with bubble bath. Both were laughing and giggling. We all get ready and left the house for Friday prayer. Came back and clean the house. Rest of the day was same like every day. Girls came and take care of them. Ammar therapist came and he got busy. Drop Bilal at the Quran class. Cook dinner, pick him up and wake Zarrar for work. He got dressed, eat dinner and left to work. Feed girls dinner, make them ready to bed, take them up stairs and put every one to bed. Zahra cry fro while and fall asleep.
SATURDAY. Every one stay in beds till 9.00. Lilli came for help after long time so it was nice to see her. I take care every ones morning needs and bring them downstairs. Feed them and put TV for them. Bilal get ready to go to Adrees's house. I got dress and drop him off. Zarrar went to his Mother's house from work and stay there till afternoon. When He came back, he was falling a sleep so he went to bed. After picking Bilal up from Adrees's house we did not do much. Our plane was to go to Toys R Us but it start snowing very bad. So we just stay home and watch TV. I cook and feed every one. Play hide and seek with Bilal and Ammar. Ammar was cranky and feel warm all day. Make every one ready to bed and put them all to bed. Ammar got fever, i gave him medication. Zahra start crying and cry for while. Then I watch some TV with Zahra and Ammar till they fall a sleep next to me then i fall a sleep too.
SUNDAY. Looks so beautiful out side. Every thing was so white and beautiful. It snowed till evening. All day we all just stayed home. Ammar keep crying and he was not happy. Take care of every ones need most of the day. Some cooking and cleaning done. when snow stopped, Me and Bilal went out and play in the snow. I shovel so much snow. It was very heavy and too mush snow on the ground. Then Zarrar woke up and came to clean up but he use his power tools. A snow blower and clean what ever was left in just matter of no time. I help in cleaning his car. Ammar watch us from the glass door whole time. We all came in side very tired. After dinner Zarrar left to work and i put every one to bed.
MONDAY Every one's school closed today due to the weather. we did not do much either just the same regular things. Brushing teethes, diaper change, bring girls down stairs. feeding breakfast. When girls get busy watching Barney i do other things around the house or chase Ammar from doing some thing wrong. Abeerah was very upset all day. KHansa also cry time to time. I guess they got tired to stay at home for three days. Bilal play video games with his father. we had lunch. Ammar speech and DI teacher came at same time for him and they both work together with him. Me and Bilal went out and clean my card. Snow become ice and it was difficult. we made a snow man then he went to play in the parking lot with other kids a snow fight. Then he went with them to his class. I cook dinner. Pick Bilal up. and feed every one dinner. Bilal did some reading with me. Put girls to bed. Abeerah stay up and keep jumping on her bed. Bilal went to bed. Zahra cry for while. I play with her for while and put her to bed. Ammar stay up and keep playing and jumping. He did not want to go to sleep so i try to update here that i did not do it for a while.
Monday, January 30, 2006 9:24 AM CST
This week been quite busy. Zahra and Abeerah having a sleeping problem. Zahra crying her useual hour every day. Thursday Zahra came home with fever. Then by night Ammar was burning up too. Friday morning was hard because i caught the fever with Zahra and Ammar. Zahra stayed home from school. Abeerah Khansa and Bilal went to school. By friday night every one except Bilal were sick. Running nose, cough and fever. I take care every one and give cold medications to every one. Cook, feed and put every one to bed. Abeerah stay up all night. Zahra cry time to time. Ammar was very cranky and want to stay in my lap.
Saturday every one stay in bed till 9.00am. Take care every ones morning needs. Bilal was ready to go Adrees's house for big brother program. Adrees Agree to be his big brother and Bilal really like him and want to be just like him. Bilal was exited to spend time with him but when i hold his hand, it was so hot. He had fever that means rest but Bilal was not happy for not going. This is the 5 time this winter that whole entire family sick together. We all stayed home. I keep giving medications every one on time. By night no one have fever but runny nose and some cough. Zarrar took Bilal to musjid there was some gathering. I put every one to bed and clean up. Clothes been piled up so high and every time i wash a load, in the pile double the amount increase. 5 Kid go through so much clothes especially girls with bad diereah. Zahra woke up after a hour sleep and cry and jump on bed for while. I gave her juice to drink her put her back to bed.
Sunday went busy. Abeerah did not felt good at all. She was really upset having runny nose. I felt so tired and my whole body was breaking up. Aliet came to visit and May Allah bless her, she went to get me milk, juice and bread which i was out of it. With family of 7, Groceries finish really fast here. I cook, clean, wash clothes and take care 5 not feeling good children when i just want to rest. Ammar making me really tired. He turn into so much to handle boy. I guess that what toddler do. He is in too every thing. These days he is in to destroying lotions, creams and tooth past or any thing creamy shape in to making a mess project. Saturday night he climb on my dresser using open 6 drawer for stairs. Took jar of Vaseline. Sat in my drawer which one full of my nice washed clothes and spread Vaseline every where. Then put all over on himself and roll around on my carpet. Man! what they made Vaseline with because after washing him ten times with soap and water he feel still slippery. Taking it out of carpet and my clothes..... Imagine.
Then he took his diaper off like 4 times...even i am putting overalls on him. Then he enter in to the bath room and whole fresh new roll of toilet paper when in to the toilet which soften in water then he made a gravy out of it and spread it all over the bath room and on walls. He is so creative and quite fast. He always do these thing when i am really busy in to changing diaper or feeding girls. He waist three of the whole new rolls of toilet paper this week. And also toilet clog with it. I can go on and on writing more of Ammar's projects but i really have to chase him before he turn some thing in to some thing else. Last night Abeerah did not slept well. She was really loud and screaming and jumping on her bed most of the night. She also have runny nose. So she did not go to school today. Bilal, Khnasa and Zahra left for school.Khnasa was realy happy this morning. I hope Zhara stay ok. She been getting sick a lot. she is not her self lately either. She is not using any word any more. I miss my old Zhara. It is just heart breaking to watching her like this.
Monday, January 16, 2006 11:06 PM CST
I could not update for while. Its been really busy last two weeks. First i been really sick for whole week. Very hard time dealing with every thing when i just need rest but there is no rest word in my book. Then my brother came over from Indiana for holiday(EID). Then Ammar got sick. Then prepare for Eid.
Eid did not went that well. Spend two days in sewing a new dresses for every one. On Eid day, first i feel hurt deep inside sending my daughters to school. When every girl in family dressing up for holiday. I want to dress them too and take them for the prayer so they can be part of celebration but i have lot of pain in my back and i know i can not do it all( pushing 3 wheel chairs). If i kept them home and i will not be able to go my self and my boys for prayer either . So i send them to school instead. But I felt sad about it. Make Bilal and Ammar ready and when i reach there for prayer, find out... i left stroller for Ammar home. He was very hyper so i have to leave my front row seat and came all the way in the back. I kept him in my arms for hour and half but in the end when i let him play with kids running around in the back and with split second he disappear in two thousand peoples. Thank Allah, Security people find him playing around in the hall after 25 minutes of our night mare but it left a huge impact on me and rest of the day i did every thing wrong in thinking of WHAT IF? I left my pocket book twice in public places(find it later safe)which i never ever forgot before... Made the horrible food that day. Every thing make me sad and i feel like crying all day.
2nd day of EID went ok. Girls stay home and i cook a hug dinner. My brother spend a day with me and we talk a lot.
3rd day of Eid my brother invited his friends over and i did lots of cooking and cleaning beside taking care the 5 kids.
Abeerh been really active this week. She is trying to walk a lot. She is jumping and laughing. She have some falls too. She is making a lot of noise. She got hurt falling from her chair on saturday on her forehead. She having a sleeping disorder again. She wakes up just after having couple of hour sleep and some time do not sleep at all.
Khansa did good this week. She have a good schedule for sleeping and getting up. She is eating good. Laughing and giggling so much. She like to be around peoples.
Zahra turn more silent and just been starring every one and stuff around her. By evening she start making lot of noises. Then she start crying out loud a lot for hours. Nothing makes her calm down, till she fall a sleep. She wakes up middle of night couple of times. She also having a lot of diereaha. She change so much in last two months. It just breaks my heart watching her losing all of her skills.
Bilal have some of his moments too but he is doing good. He is doing good in school. He is good in reading and math but writes every thing backwards.
Ammar is still not talking yet. He is getting speech and OT. He is too much to handle boy these days. He keeps me really busy.
Thursday, January 5, 2006 0:00 AM CST
First i want to thank every one for writing in the guest book. Your words of support means so much to us. I hope every one of you had a great holidays and great new year start.
Girls had a great vacation time. We did not go out much due to cold and snow.
I had a great time breaking the door at new year night. On new year night, girl from next door came to see ball drop with me and my husband brother was over to watch football game. But before we could watch that Ammar made a huge mess in the bath room with whole roll of toilet paper in to the toilet and from there to all over the floor and walls plus the diaper was thrown in to the toilet. I put zahra and Ammar in the bed room and clean the mess fast so water on bath room floor don't drip on the people downstairs watching TV. After cleaning, when i try to open my bed room door to put diaper on Ammar but... oh no...Zahra locked the door from inside and keys was inside. I freak out big time. It took me hour and half to take the kids out. First i try every thing to save the door because that was a brand new door witch was placed after 4 year of struggle but in the end when kids start crying inside we had to break the door. No one see the new year start but at least our guest have night to remember. After the door open, i end up cleaning the mess that Ammar made without the diaper on.
TUESDAY. Jan 3rd. First day back to school. So wake up early. After prayer. Give each one(Abeerah, Khansa, Bilal and Zahra) bath and dress them in layers due to freezing cold here. Bring them downstairs, Zarrar made warm milk ready for every one and i pack the lunch. feed breakfast. I dry girls hair and put shoes and jackets on. Zarrar took Bilal to the bus stop. I put the girls in to their buses. I clean up. Zarrar and i had cup of tea together then he left to take his sister to the Dr. I wake Ammar and make him ready for his teacher. He work with her and i work on mails. Zarrar call and ask me if i want to go for breakfast because he is taking his sisters out to IHOP. Off course i want to go. I want to go for so long. I get ready and make Ammar ready, Zarrar pick us up. It was raining and very cold. I had a great breakfast. Ammar was not want to sit still but after he got crayons, he was happy. Zarrar drop us off and went to get his car from his mom's house. Ammar's speech therapist came. I went to pick Bilal up from the bus stop. Girls came one after other. Abeerah did not want to walk so i carry her inside. Take care of them. Feed them. Zahra was not happy rest of the evening. I drop Bilal off for his class. Came back and cook, Then pick him up. It was raining all day, Zarrar left to work and i feed every one. Make them ready to bed(diaper change, brush teeth). Put Abeerah and khansa to bed. Help Bilal with his homework. Zahra cry and cry for two hours then fall a sleep with me. Then Bilal went to bed after watching TV but Ammar stay awake till 1:00 am. He is not sleeping much lately. I was very tired and felt sick. My whole body was hurting. I do not want to be sick. I took some cold medication and went to sleep.
WEDNESDAY. Jan 4th. I was keep getting up last night. Did not feel good all night and this morning i was really sick. But don't get sick time here. wake girls up and make them ready. Bilal was not cooperative at all so i end up drag him to wash his face and dressing him. Zarrar took the girls down stairs one by one when i could not do it. He help them with breakfast and i made lunches. Put shoes, jackets, Gloves and hat on. Pack school bags. After every one left to school. Zarrar work on fixing computers and i went to bed. I was coughing and in fever all day. Want to stay in bed but have to get up time to time taking care of Ammar and his therapist coming. Reach 2 minutes late for Bilal's pick up. His bus was gone after dropping him off. Get girls from buses. Take care of them. being sick i was really not happy. Cook dinner and wake Zarrar up. After eating. He took Bilal for his class and he bring him back. Zarrar left to work. I feed the girls. Abeerah bite on my finger while i was feeding her. I guess i was slow today due to fever. Zahra start crying for hour. help Bilal with his home work. Make them ready to bed And put every one early to bed. But Ammar Decided to stay up late so i clean up the kitchen. I hate to be sick. I did not have a happy day.
Tayyaba Beg
Saturday, December 31, 2005 2:15 AM CST
Happy new year to all. Hope this year full of cheer and joy for you.
WEDNESDAY. (December 28th) Did not do much earlier, Same way take care the kids and feed them breakfast and let them watch Barney and other stuff. Yesterday we could not able to go to the park because Zahra fell while Bilal was chasing her and trying to stop her not to go on the road. She hurt her nose, Bleed and cry. Kids been home since the vactaion start. zahra get little upset and want to go out. So i make them ready. Abeerah start crying so Zarrar said he will watch her and i can take others out. We went to park. Ammar and Zhar run after the birds and ducks. It was little cold but nice out. We stay there for hour till Bilal took picture of every bird or duck, goose out there. Then put every one back in to the van and went to the mall. Buy shoes for Zahra. Bilal did not like any shoes in payless. He wants to go to other stores to look but he saw rides in the middle of mall and wants to go on them. Bilal and Ammar did not want to get out of the rides. And it was 4pm time for Bilal's calss. Zarrar call and told me to come back because he have to leave for class also. So i forget the rest of shopping. Buckle every one up back in van and reach home. Make Bilal ready and drop him for class. Came back cook dinner. Feed every one. Bilal came home eat dinner. Zarrar left to work. Bilal wants to go see his cousin. His Uncle came and pick him up. I put girls to bed clean up the kitchen. Watch Tv with ammar and Zahra while she was fussy and cranky and cry time to time. My mother in law and Kids bring Bilal back. They stay for hour. after they left, it was time to every one go to bed.
THURSDAY. (December 29th)
Very sad day today for me. My Mother passed away today a year ago. this year been so hard and i missed her so much. May she rest in peace. Ameen. Abeerah been crying a lot most of the night last night. Her new teeth are coming and she is very uncomfortable with that. I gave her Pain medications and also rub Oracle that calm her for while. Khansa also woke up with fever and really dark green runny nose. Zahra was quite. After taking care of every one's morning needs, bring them down stairs. Ammar therapist came so he got busy with her. I make breakfast and feed every one. Kids watch TV. Bilal wants to make brownies. With his help we bake a try with lots of nuts in it. I wash couple of loads of clothes and keep running back and forth in the basement. Later I drop Bilal to his grandmother house because he wants his cousins to taste his brownies. I made some sandwiches and feed the girls. Abeerah was very unhappy and she was really making loud noises. Wake Zarrar up and went to pick Bilal up. Make him ready and drop him his Quran class. Made dinner. Talk to my brother and sister and remember the same time when i got the news about my MOM's pass away. Every one in my family really sad today. Bilal and Zarrar came back and they eat dinner. Then i feed to girls. Zarrar left to work Abeerah was crying so much. I walk with her in the living room. Gave her pain medication. Zahra start crying. make girls ready to bed. Zahra was crying. Abeerah was screaming andon top i found my feet in a puddle of some thing wet. And guess what i find out that Ammr walking around with no diaper. Put diaper on him and clean the puddle. Took girls upstairs and put them to bed. Ammar fell a sleep after finish his bottle and then Zahra also went to bed early. Abeerah was making noises and jumping on her bed. So i turn fish lamp on for her and she start looking at that. Bilal also went to bed after doing his home work.
I need to clean the kids room carpet. it was dirty and on top Abeerah put her hands on Ammar's daiper when i was changing him earlier and toss it to the other side of the room. Huge mess. i clean but need to be disinfected. I end up cleaning the whole downstairs with bleach. Clean the walls, floor and shampoo the carpets. Clean the whole entire kitchen and wipe every thing down with bleach. Got done and see the time, it was 3.30am. Came to bed but want to check my mail and end up chatting with my sister for hour. She was really sad and missing mom so much. Then after checking on kids and putting blankets back on them, i wet to bed. My whole body was in pain.
Monday, December 19, 2005 6:50 PM CST
FRIDAY. (December 16) Finally after being Sick the whole week kids was feeling better today. So every one goes to school today. I make every one ready for school. Dressing taking little more time than usual due to putting the layers of clothes to keep them warm. Bilal was little cranky and give me hard time getting ready. Zarrar had a very hard day yesterday because his eyes was really red due to working in the basement with all the mold there infected his eyes. He have hard time seeing. So he was not able to help me this morning. He keep rubbing his eyes and every five minutes he goes and flush his eyes with cold water. I know the feeling because i went through the same thing this whole summer. Poor guy.
After making kids ready, feeding breakfast, dressing them warm with Jackets and gloves and shoes. Make lunches ready and school bags ready. I could not go to drop Bilal to the bus stop because girls buses came same time and he miss his bus. After girls (Abeerah, Khansa & Zahra) left for school. I took Bilal to drop him at school. In the hall way meet his teacher and she told me that Bilal is doing really good in his class.
Came back and wake Ammar up. Make him ready and feed his breakfast. Today is Abeerah and khansa's school have concert. I got dressed. Zarrar said he will go but his eyes was in lots of pain so me and Ammar left to see the concert. Find parking three blocks away. Many parents came. Concert start and it was so beautifully put it together. Kids did great job. I could not keep my tears in and cry the whole time. Abeerah's class present Hawaii. Every one was dress up in grass skirts and Flower necklaces (leis) . Abeerah(with her one on one) walk around and gave audience some lies (Flower Necklaces). It was so beautiful. There was Hawaiian music and whole back ground made with palm tree, water and bright sun. Then Khansa's class came on the stage and dresses in blue and whites with stars on their head and shirts. They all walk in circles and did a Hanukkah dance. Later they bring a pole with ribbons all around and every kids grab a ribbon and dance around with their one on ones. Every one was clapping and this bring really great smiles on every one. It was nicely put it together. Kids did a great job. After there was Macy's parade. Kids on wheel chairs passed by one by one with big balloons. It was so cool parade . Then there was ballet and ballerina dance. And sing along and sing along in sign language. It was so nice. Love the whole show.
After the show I went in Abeerah's class and meet her teacher. Then visit Khansa's class and meet every one. I did some other meetings for some help with equipments and wheel chairs problems. In the way back stop at meet store and buy some meat. Came home right on time for jumma. clean the house. Pick Bilal up from his bus stop and then girls came home. Abeerah looks very happy. Zahra came home cranky. i change their diapers and give them juice to drink. Bilal start crying that his ears hurts. He went to lie down and fall a sleep with Ammar. I cook dinner and feed every one. Zarrar left to work. Make girls ready to bed. Play with Bilal some chess. Zahra cry for couple of hours and ran up and down the stairs. Ammar sound really quite so i went to check him up stairs and oh my!!!! he made a huge mess in Bilal's room on top of his toys after taking his diaper off. It took me two hours to clean and sanitizes. I was really tired but Zahra and Ammar do not want to sleep. I put every one to bed and fall a sleep.
SATURDAY. (December 17) Girls woke up early. Bring them all down stairs after taking care their morning needs. Abeerah was not happy at all. she was crying and some time she was making a lot of noise. She try to keep getting up and walk around the room. which is great but she falls and then try again and then fall and then try again. She just want to be up walking. But her legs was not support her toolong. Poor girl. We did not do much most of the day just stay home. Kids watch Barney most of the day. Bilal play with his toys. Zarrar came home after his class and went to sleep. I give Bilal hair cut and then give him bath and Ammar bath. Then I clean up and did some loads of laundry. Lilly did not came to help last 2 weeks. Help Bilal with his homework. I cook dinner and feed every one. Zarrar woke up and after Dinner he left to work. Ammar and Zahra up t o taking their diapers off game most of the day. I even try to put tap around the diapers. It did help but not much fun when i need to change their diapers because these kids do not sit still for second.. After putting abeerah and kahnsa to bed, i work on fixing girls www.helpourgirls.com site which is upside down and i can not figure it out to fix it since they change every thing around. Still not able to do so, even spend long time on it. Zahra cry for bit but soon she fall a sleep. Put boys to bed. After cleaning up the kitchen, i went to bed.
SUNDAY. (December 18) Woke up early and clean up the house. Then kids get up one by one and i bring them down stairs. Abeerah cry and fuss for while. After breakfast, i gave Zahra bath. Zarrar came home and he did not feel good so he lie down to have some rest and fall a sleep on the sofa. My mother in law came over. Bilal play with his cousin for while. Later he left with his Grand mother and cousin to their house. I cook and feed every one. Khansa cry for while. So i sat with her and watch some TV with her. Put Ammar to sleep for his nap. Bilal came back from his grandmother house. Zarrar left to work. I feed kids dinner. Give medications. Make them ready to bed Ammar did not feel well and he was fussy and cranky. Read some story books to Bilal. Make kids clothes ready for school. Then we all went to bed.
TUESDAY. (December 20th)
HAPPY 5 BIRTHDAY TO MY BABY ZAHRA.
I can not beleive she is grown so big already. She been going through regression these days and crying a lot. She stop calling me Momoy and not even singing "I love you" song to me any more.
Her birthday did not go as planed because Ammar been sick for last couple of days so i could not go out to buy her a cake. Her teacher gave her little party at school and i could not even go there to join them because my baby sitter deside to quit on me. I felt bad so last night i blow lots of baloons for her and we put #5 candel in the middle of cookies(that is the only thing lefted at home since i did not go for shoping for over a month now). But she was really happy watching the candel and playing with baloons with Bilal. But her cake is due and as soon as i am able to go to the store we are going to have her party.
Monday, December 12, 2005 1:37 AM CST
Last week been really busy. My sister and my niece came to visit from Indiana with her other in_laws family. It was fun and lots of cooking. Then Zahra and Ammar got sick. Zahra did not attend school last week due to not feeling good. Tuesday I slipped from outside stairs because of ice when i was coming back in hurry after putting Khansa in to the bus and to get Abeerah to put her in the bus . My foot been in lots of pain and having little hard time standing and walking. Then we had a great amount of snow on Friday and school was closed. Busy busy time.
SATURDAY. December 10th.
Did not sleep till late last night due to Zahra, ammar and Bilal stay up late so we all stay in bed little late. Abeerah was sick and she did not get up but Khansa was up early so i put TV on for her and she Just watch TV sitting on my bed while other stay sleeping. Then Bilal woke up and change the channel to for himself. Then Khansa got noisy and start climbing on every one in bed so Zahra, Ammar also woke up. We came down. Make breakfast, Feed, Put Barney on for girls. Give medication to Ammar and Abeerah for fever. Clean up. I cook dinner. Bilal and Zarrar went out to home dept. and some other store for some stuff in need. Abeerah start crying. She was keep trying to stand but can not stand. then she able to stand and try to walk around but had some falls. Zahra start crying out loud and just cry and cry. I try to calm her down. Gave her medication and give Abeearh her medications. I just play around with girls, and feed them. Abeerah looks very weak today. Change them(clothes and diapers). Make them ready to bed. Took them upstairs. While i was carrying Abeerah to upstairs, she push with her feet against the stairs and we both going to have a very bad fall but luckily i turn my self quick and just fell against the railing and a stair down. which i hurt my back but save both of us breaking bones.
After putting girls to bed got ready and wait for Zarrar. I was hoping to visit my sister in law witch i did not go to see her whole week. Actually i did not step out the house at all week long so i want to get out today and Zarrar was going to watch the kids but he came back late. i call my sister in law and she said she still awake. I left Ammar and Zahra with Zarrar. Me and Bilal went to see her and in our way, I bought her gift. She looks better and recovering fast. Came home and find Ammar taking his diaper off witch is a new thing he start to make some mess. Zahra was sleeping. We all watch Madagascar and every one fall a sleep watching it. I cover every one, check on girls and went to bed.
SUNDAY. December 11th.
So cold is here and time to get some flue around. Woke up and find Abeerah, Khansa, Zahra and Ammar had fever this morning and Bilal have a bad runny nose. Zarrar have some work to do at musjid and he is also taking a class so he left early. after taking care of every one, I clean up big time. House was a big mess. Bilal helped. vacuum cleaner decided to broke on me. I take care sick kids all day. every one watch Madagascar three time. I cook dinner and feed every one. Gave them medications continuously. So i do not see any one going to school tomorrow. Zarrar came back and had some sleep. After dinner he left for work. Zahra cry for while then laugh out loud running after Bilal. Ammar was way too cranky today. I got many head hits from him on my face. i hope kids get better soon. Every one went to sleep early but i work with bills and papers. Clean the kitchen, and ready to bed.
Thursday, December 1, 2005 8:04 PM CST
MONDAY. November 28th.
Abeerah stay up last night and she was not happy all night long. So i did not have any sleep either. I make her ready for school but she was jumping and crying the whole time. I bring her down stairs and gave her soy shake to drink. Then wake khansa up and make her ready. Wake Zahra up, she looks happy so i make her ready for school. Bilal woke up and he start crying. He said he is not feeling good. Yesterday he keep going in and out without Jacket. He did feel warm and had runny nose. So i let him stay in bed. I feed girls breakfast. Give medications to Abeerah and Zahra. Make lunch, put shoes and jacket on girls and make their school bags ready. Abeerah was still crying. Bus came one after other and all three girls left for school. I made breakfast for Bilal. Give him medication. Clean up the kitchen and vacuum all the rooms. Bilal sat to watch his movie and I went back to bed. Woke up 10.00 and make Ammar ready for his teacher coming 10:30. feed him breakfast. His teacher came and he got busy with her. I clean upstairs. Zarrar woke up and i make breakfast for him. After Anna left Ammar's OT came for his once a week therapy. He start playing with her. Bilal works on writing a story for his home work. After OT left, Speech therapy came. Monday is busy day for Ammar. He love playing with toys that therapists bring for teaching. I left for bank. There was some problem i was having in my account. When i came back, Zahra was already home and she was crying. I took her shoes off and make her comfortable. Then Abeerah and Khansa came back from school. get them from their bus. Abeerah was very upset and she was crying. Bus driver told me she cry all the way t o school and coming back. I bring her inside make her comfort able. Give every one juice to drink, Change diapers and put Barney on for them. Bilal left with his father to his class and i cook dinner. Feed every one. Abeerah was very hyper and making a lot of noise. Zahra start crying too. I gave their medications. Bilal and Zarrar came back. They eat Dinner. After Zarrar left for work. I make girls ready to bed and put them to bed. Zahra cry till 11:30 at night. she was running up and down. She completely freaks out at this time every day. I do not know what is bothering her. Dr. do not understand what is wrong with her. Abeerah slept three hours and she was up and start crying again. I put Ammar to sleep, Try to make Abeerah calm but she was really not happy and did not sit still. I went to bed and and keep checking on her time to time. till i fall a sleep at 3:00-am.
TUESDAY. November 29th.
Woke up 6:00. Abeerah was up and making really loud noises. I gave her medication and make her rap around a blanket tight to make her calm down so she have some rest. This works most of the time. Make Khansa ready for school. Then wake Bilal and help him get ready. Then wake Zahra and make her ready for school. Make lunch and feed every one breakfast. Put shoes and jackets on. Zarrar was sleeping and he did not get up, after working all night, he was tired so i took Bilal to the bus stop. Put him in the bus and ran back home. Zahra's bus was just came front of my door. Put Zahra in the bus then Khansa's bus cam and i put her in the bus. After i clean up and bring Abeerah downstairs. She was very hyper. feed her breakfast. Woke Ammar up and make him ready. Feed him breakfast. His teacher came and he got busy. Abeerah fall a sleep. Zarrar woke up and he mad breakfast for me. It was so yummy Omelet. I really enjoy my breakfast. I clean up the kitchen. Abeerah slept only for hour and she was up and start crying and jumping again. I gave her pain medication. Ammar's speech came but he was very cranky. She works with Ammar. Zarrar try to make Abeerah calm down. Then he went to get BIlal from his bus. After Bilal, Zahra and khansa came back from school. I feed every one, Zarrar took Bilal for his class. I wash some clothes. Zahra start crying and she start running around crazy. Abeerah was making noise and jumping and falling down. I try to calm her down. Play with Zahra and Ammar. I Took Zahra out for walk. Then i cook dinner. Zarrar and Bilal came back. Every one eat dinner. Ammar fall a sleep. Zarrar left for work. I made girls ready to bed. Put girls to bed. Zahra stay up and keep running around. She ran up and down stairs 7 times. she circle around the dinning table many time. Bang her self in to things couple of times. we are unable to understand what is bothering her. Her teeth are fine. Her BM is look fine. But she seems scared when she cry and completely not her self. I can not even hold her and have hard time changing her diaper when she is in very hyper and crying out loud. After two hours of walk she got tired and sat down next to me and watch TV. When she fall a sleep, I help Bilal with his homework. He went to bed and i clean up the kitchen then Ammar work up and start playing. I was tired but this boy keep jumping on me. Abeerah woke up too and start screaming so i went to her bed, make her calm and put her back to sleep. Ammar fall a sleep around 3:30 Then i went to bed too.
WEDNESDAY. November 30th.
What a day.
Woke up 6:00. took a bath and dressed. Wake Bilal up. He start getting ready. Abeerah was already up and i gave her bath. Make her ready for school. Bilal jump in shower and took a bath while i put his clothes together. Wake khansa up and give her bath and dress her. Wake Zahra and make her ready for school. I did not have any bread so i quickly make Marconi and cheese for kids lunch. feed breakfast to every one. Make lunch ready. Put shoes and jacket on and make school bags ready to go. Give girls medications. When I was leaving to drop Bilal to his bus stop, right then Abeerah, Khansa's and Zahra's buses pull one after other. I had no choice so I start putting Abeerah, Khansa and Zahra to their bus. When their buses left, it was too late for Bilal's bus. So i got ready and took him in the van to drop him off to school. Way back i stop and get milk, Bread and soy milk. Came home and clean up. Wake Ammar up and make him ready and feed him breakfast. His speech Therapist came, after she left his Teacher came. He was not cooperated today and stay very cranky the whole session. After they left, i try to put him back to bed and I fall sleep with him for hour. Woke up and Zarrar was up, Make lunch fro him. it was time to pick Bilal up from his bus stop. Zarrar pick him up. Then Zahra came home from school. Weather was nice today so I took Ammar, Zahra and Bilal in the back yard. They play and i clean some in the back yard. Gather some seeds for next years. Abeeraha and Khansa came home from school. Zarrar took Bilal for his class and i bring every one inside. Change diapers and feed them. Put Barney on for them. Abeerah start crying. School send a note that she cry all day in school. Gave her medication. Then Zahra join her too. Zahra was really not her self when she cry. It was so hard for me to take care both of them. I could not cook so we eat left overs for dinner today. Zarrar left to work. Zahar stop crying after dinner. It was really hard to feed Abeerah when she was so hyper. Khasna been doing really good. She is so happy these days. I make girls ready to bed and take them upstairs one after other. Put them to bed. Came back to check on Bilal if he finish his home work and he was sleeping on top of his books. Zahra start crying again and she freaking out. She seems scared and just run and run around. She goes upstairs and downstairs. Goes around and around the coffee table then goes around the dining table. Medications seems not helping. Some times she beet her self on her head with her hand. Either she is scared of dark or she is over tired or it is MPS regression bothering her. It is just hurts so much looking her like this. I praying for her every day. I hope HE listen and takes her pain away from her or she can tell what is bothering her. I took her upstairs. Abeerah was crying out loud. I let Zahra jump on my bed with Ammar and she start laughing and forgot her crying. After she got tired she lay down and fall a sleep. Because of Abeerah, Khansa was not sleeping either so i bring Abeerah downstairs. Watch TV while i hold her so tight between my arms and legs and lay down on the sofa. She struggle first and keep crying between then she calm down, keep watching TV and fall a sleep. Zarrar always make her calm down like this when she is in very hyper mood. Holding her tight make her feel secure. I carry Abeerah to put her on her bed. Came down and clean the kitchen when I heard some crying. Now It was Bilal. He said his feet hurts. I massage them but he did not stop crying. He looks warm. I gave him medication and he fall a sleep. I was so tired and feel hungry so i cook some food, Me and Ammar eat. Then we both went to bed.
Need lots of your prayers for Ammar. He turn 2 yeras old and do not talk yet.
Hardly had some sleep last night due to Zahra was not happy last night and she stay up most of the night. Then had to be up early to make kids ready for school. Wake Abeerah and Khasna up, washing face and brushing their teeth, I dress them and bring them down stairs. Make Bilal ready for school. Zahra wake up and she was happy so i dress her and bring her down stairs. After putting shoes and jacket on every one, While Zarrar give them milk to drink and i made lunches. Pack their bags and wait for the buses. Zarrar took Bilal t o the bus stop. I put Abeerah and khansa in the bus and right after they left, Zahra's bus arrived. After she left to school too. I clean up all the mess. Make breakfast for Zarrar. Went to get ready for my parent-teacher appointment for Bilal. I got dressed and make Ammar ready. Zarrar also join us. We left 8:00. Teacher was waiting for us and we had a hour long meeting and talk about Bilal. Teacher told us that he is doing very good in class. He is learning great. and he is good in math. He need to work on his hand writing. After the meeting we went to see Bilal in the Gym. He was happy to see us. Ammar had fun running in the gym and kids run after him. We came back home and i did some vacuum for my next appointment to look clean around the house. Zarrar left to kill(Halal) turkey for our self and for some other family. Ammar appointment was 10:30 with early intervention for 6 month review. All the therapist came and we talk about Ammar. Early intervention will continue with the services. Right after they left and i was thinking to rest but Zahra school call to pick her up because she is having a diarrhea. I make Ammar ready and we left to get Zahra. Weather was very bad. It took me 45 minuets to reach there. I always love going to school to give Zahra suprise and she always had a big smile when she look at me suddenly in her class. She always call me MAMA and come running at me. Today i did the same thing and pull my self front of her but she did not look at me then i call her name then i follow her around but she did not notice me or show that she knows me. IT BREAK MY HEART. i just want to cry there. MPS stinks and this disease taking over on Zahra. We stop way back to get fruit, vegetables and soy milk for Ammar. Then i came home. Zarrar was already left to the hospital with his mother to see his sister who have a operation on her hips. Bring groceries in side. Change diapers. Put movie for Zahra. Ammar's speech came and he got busy with her and i left with Zahra to get Bilal from the bus.
Bilal came home happy. He watch some TV. I start cooking dinner. Zahra start crying and she start cry really out loud. She was going really hyper and she looks scared. she climb on counters, Back of sofa's, Dinning table and on every thing. Lilly came to help after long time. I was happy that clothes i washed will be folded. I feed kids. Zarrar eat his dinner and left for work. I made girls ready to bed. Zahra was cry so much that i could not hear no one. Bilal sit to do his home work but Zahra keep crying and keep climbing on me so i could not help him and he was getting frustrated so i send him to bed. Zahra crying was getting worst. I lay down with her to keep her calm but she did not want to sit still. She walk in circle around and around to the coffee table. By 10:00 Ammar went to sleep. I stay with Zahra and try to watch Tv with her. Finally she fall a sleep 11:00. I clean the kitchen. Then i went to bed. I only had a couple of hour sleep when ammar woke up and start crying and zahra woke up with his noise. She cry for little while and then went back to sleep. Ammar stay up till 3:00 am. I read books to him and then he went back to sleep. I was so tired.
WEDNESDAY. November 23, 2005
Woke up little late of my usual. But good thing was this that i have to make only two kids ready, because Zahra and Abeerah was not going to school today. Their school told me that if there BM is loose and they goes more than 2 times then next day they can not come to school. Which i told them that it part of there syndromes to have diarrhea. I made Bilal and Khansa ready for school. No lunches either due to half a day so it was quick ready. After both went to school. Zahra woke up and was very happy. And i felt happy to see her happy. She watch TV and i made breakfast. After i wake Ammar up for his Speech therapy was coming 9:00 today. I dress him and bring him down stairs. His teacher came and i gave her his breakfast because she was going to work on his spoon eating. Abeerah was still sleeping. Zarrar left to see his sister in the hospital. Today she was moving from NY to NJ which is great. It will be closer to visit her in rehabilitation. She is feeling better now and took some steps today. After speech, Ammar's D.I. teacher came. Ammar love her and sit with her whole 45 minutes. Abeerah woke up and i change her, bring her downstairs. She can not come down her self any more so i have to help her. After feeding breakfast, i went to get Bilal from the bus stop. Then Khansa came back from school. I take care of her needs and she watch Barney with her sisters. Zahra get hyper time to time. She continuously crying loud and keep chewing her clothes. I feed every one. Zarrar took Bilal to his Qran class. Did some cleaning. Zahra start crying out loud again. when she cry she looks so scared. and she looks she is not her self. She is not here. I keep try to calm her down. I call patty (Other MPS mom). She said she might be teething. But i try to feel around her teeth in her mouth but i don't see any thing new is coming. I gave her some Tylenol for pain. she cry and cry. Zarrar came back and try to calm her down. Bilal want to go see her aunt witch he did not since she had a surgery, He also want to give her the thanks giving card he made for her. Zarrar and Bilal left to the hospital. I want to go but i can not go since zahra is not doing good. She calm down for while and watch Barney. After feeding the girls, Abeerah looks very tired and she keep falling a sleep. So I took Abeerah upstairs and put her to bed. Khansa, Zahra and Ammar watch Dora. Zarrar's nephew came to make things ready for stuffing for Tomorrow's Turkey. He work in the kitchen for while. We talk about some recipes for sweet for tomorrow then he left. Zarrar came back after dropping Bilal to his Grandma's house. where every one is get together for thanksgiving. Zarrar left for work. And i put Ammar to sleep. Then i put Khansa to bed. Zahra start crying again and she cry for two hours. It is so difficult to hold her when she is freaking out like this. No medication is working. After she fall a sleep in my lap. Ammar woke up did not like Zahra in my arms. I put her down. Gave Ammar some thing to eat. clean the kitchen. Check my mails while looks pictures in the books. Then we both went to bed. it was very late.
THURSDAY. November 24,2005
Zarrar give me couple of calls from down stairs when he get back from work but i did not want to get up. Then he call me that Zhara is up but i was tired. So he play with Zahra and put TV on for her. 9:00 Ammar's teacher came. So i woke up. Lilly also came for help. I take care Abeerah and khansa and bring them downstairs. Zarrar and Qasim was working on turkey. They stuff it, sew it and put it in the oven. Great. Then both left to go to the hospital. I feed the kids breakfast. I miss my helper Bilal, he spend night in his grandma's house last night. I help Lilly in cleaning the house. Then i left to do some shopping and she babysit the kids. I spend two hours in shopping and buy whole a lot for today's dinner. Stop to buy lots of Glass. Came back put groceries away. Start cutting vegetables. Then i cook. Then feed girls and Ammar. Zarrar came and check the turkey. It was done. He left it uncovered to brown. He start cutting potatoes. I start setting the tables. change 4 kids diaper in between. When start cooking mushroom and onion stir fry, Zahra start cry and she was louder than ever. Qasim( Zarrar's nephew) also freak out watching her like that. I gave her medication. I try to clam her. My poor baby just not her self. She start dropping thing on the floor. I could not cook so Zarrar took her out for walk. I finish stir fry. Mash potatoes went on. I took girls up and set Tv on for them upstairs. Make their room in to other dinning area. My in laws arrived. I gather plates, fork and other things. put biscuits in the oven. Zarrar came back and Zhara looks happy. Zarrar make mash potatoes. I put every thing in to serving bowls. And dinner was served. After dinner, My mother in law and sister in law left to the hospital to feed turkey to my sister in law. I made tea. While guys was watching game. Clean up and set table for sweets. every one enjoy sweets and hot tea. I feed Khasna. Then Zahra start crying again. Every one start leaving. Zahra was so loud and she was banging her self in to things when she run in out of control. I Change her clothes, put shoes and jacket on her but it was not easy when she like this. I took her out side, we walk one block 8 times back and forth. It was freezing outside. She was crying out loud and keep try to let go of my hand. when i felt i am enough cold so i bring her home. But she was not happy. Zarrar try to hold her. She keep on and on till 10.00 and fall a sleep with Zarrar. I feed Abeerah. Every thing was still on table and every where. I put girls to bed and clean the kitchen big time. Dish washer is great help but So many pots and pans to wash. Put left overs away. Feed Ammar again. check mail and then went to bed. What a busy day.
FRIDAY. Wake up early at 5:30. After my needs and putting kids clothes together, i woke Abeerah and khansa up. Give Abeerah a bath and dress her. Zarrar came home and he help Abeerah go downstairs so he can give her morning soy milk shake. I gave Khansa bath. Bilal took bath himself while i was dressing khansa. Took khansa downstairs and Zarrar took care of her. I bring Zahra upstairs because she slept downstairs with me last night watching TV. She going through hard time these days. She been crying a lot and she seams very scared. She walk around middle of the night and gets up many times crying. She was happy this morning. I gave her bath and dress her. Bring her down stairs and put shoes on every one. Make lunches and make their bags ready. Zarrar took Bilal to the bus stop and i load Abeerah and khansa on the bus. After both left. Zahra bus came and i put her on the bus. Zarrar came back after putting Bilal on the bus. I clean up all the mess in the bath room and kitchen. Make breakfast. My back was in pain giving girls bath. I have to carry them here and there. So i went to rest. Woke up back 10: 00 and wake Ammar up. he is not feeling good for two days. I dress him and feed him Breakfast. His teacher came and he got busy with her. Zarrar wake up and went to prayer. Way back he bring his friend with him. I mad some goodies with tea to feed them. Went to get Bilal from the bus stop. He came home and he was hungry, Made sandwich for him. Zahra came from school. Take her jacket and shoes off and gave her some thing to drink then Abeerah and Khansa came back home. I got busy with them. I change them and feed them. Later Zarrar took Bilal for his class and i cook dinner. Did some laundry in between. Zahra start crying. She cry and cry. nothing make her feel better. Zarrar came back with Bilal. He hold Zahra for while. She got quite for while Then every one eat dinner. Zarrar left to work. And i mad kids ready to bed. Read books to Bilal. Zahra start crying again. So i lay down with her and Ammar on the sofa and we watch TV. Zahra one side and Ammar sleep other side. He had a fever. I been giving him medication every four hours. Both fell sleep and i did more laundry. I am still not done with laundry yet because too much to wash since we get back from our trip to Arizona. I check some mail on computer and after i went to bed.
Wednesday, November 16, 2005 10:32 PM CST
CONFERENCE, 2005 - ARIZONA
THURSDAY, 10th November.
WHAT A DAY. Hardly have any sleep packing most of the night. Wake girls up 6:00 am and start making them ready. Our plane was to be on road by 7:30 am for our 9:30 am flight but loading kids, baggage and wheel chairs, we got little late. Traffic was bad on top so we reach at the airport unload every thing and got our boarding passes. Zarrar went to park the car and i start going through the security. it took quite a time taking every ones shoes off and put again. I was getting on the plane But Zarrar still was not there. Kids was belted and i sat down but Zarrar was still not there. I call him and find out he is still going through security. He got late in paking the van which was 6 miles away. Then airplane gate close down and ramp pulled away. I got panic and start screaming that i can not fly with out my husband. I was panic, like i never before. I start getting ready to get off the plan. I open girls belts and ready to bring them to get off the plane. Plane door opened and ramp put out. Right then air hostess give me sign that my husband made it. Thank God. Plane waited on runway about 20 minutes and then we were in the air. Girls was quite awake and was very active. Ammar do not want to sit on the seat and Zahra keep crying. Feeding and diaper changing was quite challenging. We land on phenix airport and call the hotel for pickup. Shuttle came and we reach to the hotel. While we were getting off the van, met PATTY and JESSE. Jesse also have MPS III and i been taking and chatting with Patty on phone put it was first time to meet them. Check in and reach to our room. Relax, change diapers. Zarrar fall a sleep. Kids were very hungry, i Went to order pizza. Kids watch TV for while. Then pizza came and i feed the kids. Then it was time to MPS registration, meet families and dinner. So i start making kids ready. I mad Zahra ready and took Abeerah to the bathroom, when i came out, Zahra was missing. She escape from room . I ran here and there calling her name. Parking lot was right behind our room and then there was a busy street. But not too long after some one was bringing her which direction i was running. I was happy to see her. Bring her back to room and told Bilal to watch her while i start making Khansa ready and i was changing her diaper, i heard door open and i know it was zahra so i ran out but she was out of sight. There is three different direction she could go, i was running again without the shoes. I check every where. I did not see her any where. Ask every one who comes in my way. i got really panic this time. Went back to room, put shoes on and wake Zarrar up. Ran back out and then i saw couple of girls running to me and they told me that they have Zahra with them at the MPS registration. Bring her back and this time i learn to double lock which i did not see before. get ready and went to register at the conference desk and then it was the welcome banquet which was so much fun. We ate, we visited so many friends that we get to know them through computer and now we met them in person. Then there was break-out sessions. Put kids to the child care that was arrange by MPS society, Drop Bilal at sibling session. We sat with other sanfilippo families for MPS III session. Learn some new things. By 10:00pm we pick kids up and came back to our suite. Every one was very tired. Put kids to bed and went to sleep.
FRIDAY, 11th November. Abeerah woke up after taking an hour sleep and stay up and very active rest of the night. I stay up with her half of night and then Zarrar stay up with her rest of the night. I woke up early and give every one bath and make them ready to go for breakfast. After feeding kids, we went to the conference hall. Hang little bit with Alicia and Patty. checked kid in day care. Then ELMO came by 9.00 and kids really loved him. Ammar, Zahra gave many hugs to Elmo. Took some sessions and meet some more new families dealing with MPS. Then there was break. Pick kids from day care. went back in our room and change girls and make them ready to go to Phoenix zoo. Buses was coming and going from hotel to the zoo. We walk around at the zoo and see some animals. Weather was so beautiful. I love the seenary. MPS arrange BBQ. We eat veggie sandwiches and feed kids. then see more animals. Zahra and Ammar love monkey jumping at monkey village. Buses came and we load every one back in the bus. Talk to Tami and Sammie way back. Zarrar was very tired when he get back so he fall a sleep. Kids watch TV. I made some oatmeal for kids. Abeerah and khansa was tired so they fall a sleep. I took Zahra, Ammar and Bilal and went to eat Ice Cream we sat by the pool and hang out little bit. Meet some parents and kids there. Came back to the room and put kids to bed. Every one was very tired today and we all went to bed.
SATURDAY, 12 November. wake up 5.00, Zarrar was up and getting ready. Kids were still sleeping. Bilal woke up and he play games in my laptop. I got dressed. Me and Zarrar went for Breakfast provided from the hotel which was across from our room. Bilal stay to watch kids if any one wakes up. We had a great time at breakfast that i guess do not remember having one in peace in many years. Came back, wake kids up and make them ready and went for breakfast for them at 8.30. By 9.30 we got done feeding girls. Went to daycare. Sign kids in. Day care was divided in two room. One was for unaffected kids and other with MPS or ML kids. Snow white visit kids and then Barney was coming. Barney came and all the kids really cheer up. Every one give Barney a hug. Kids had fun time. Also had a visit from congressman. Listen some different sessions and hear from great speakers. Then there was break for lunch. Lunch served in boxes but unfortunately we did not get the vegetarian one. Went to the room. Change girls, and Ammar clothes and diapers and feed them. Went back to day care and sign kids back in the daycare. Went to MPS Forum session. we sat and talk to the families. Then i join IEP session and took some notes, get some answers for my questions. Then there was break again. went to pick up kids but find out my husband already took them all 5 of them. Reach to our suite and make kids comfortable. We had some time before Banquet Dinner so I took kids to have some fresh air. We bought Ice cream and eat by the pool. It was so beautiful evening. Went back in the room and make kids dress up for the Dinner. I dress up too. Zahra was not feeling good. She was very hyper and crying a lot. Dinner was great. Some award was given. Video of MPS kids was really heart breaking but done a great job by Leslie. Dessert was really yummy. Feed kids. Ammar started to have a bad time too. So we left and came out side. Bilal and Ammar run Around. we met many families and we talk to many new friends. Took some pictures. It got late so we all were tired. Went to the our Suite and change girls clothes diapers. After putting every one to sleep, i went to ladies get together by the pool. We hang out till late and had so much fun. It was so nice to be with people who understand each other and each others problems. I really enjoy the conference and being with all the families i been talking on the net or phone. I came back 12:30 and went to bed. Abeerah woke up 2:00 and stay up rest of the night.
SUNDAY, 13th November. woke up early and went for breakfast with Zarrar. Came back, make kids ready and went for breakfast. Had a great time there and say good by to many families. It was hard saying good by. This weekend pass so fast. Came back to our suite and start packing up. Kids watch TV. I did some laundry. Packing took a while because things were spreaded every where. We check out by 3:00. Our shuttle was coming at 6:00 so we walk to the mall which we heard is 4 blocks away but when it comes to walk with 4 strollers, it felt like a mile away. We did some shopping. Walk back to the hotel, Change kids diapers. Load luggage and every one into the shuttle and reach to the airport. Put one by one on the wheel chairs. When i turn around shuttle was gone and my computer bag left in the van so i call the hotel and they beep the shuttle to come back. We got out boarding passes. Sat little bit in waiting. Our seats were not all together so ladies at the gate fix it for us and gave us front row seats. Ammar and Zahra decided to cry all the way to new jersey. It was very very tiring flight for me. Plane landed and after getting our luggage Zarrar left to get our van from packing lot which was 6 miles away. He took about 40 minutes and kids was really not happy sitting on wheel chairs for so long. Load every on and every thing in the van and we drove back home. Reach home by 5:00 am. Home sweet home. After changing put kids to bed. I was very tired to send kids to school today. I went to my bed and fell a sleep with no time.
3 DAYS LEFT IN ABEERAH'S 9th BIRTHDAY. NOVEMBER, 19th 2005
Tayyaba Beg.
Tuesday, November 8, 2005 8:36 PM CST
I am so sad to tell about our very special little friend Tyler , who passed away. Please stop by and write your prayers in their guest book. TYLER'S JOURNAL
Also another our little friend Maddie earned her Angel wings today. You can visit Maddie's journal by clicking hereMADDIE'S JOURNAL
We are leaving to Arizona MPS conference on Thursday. We will be returning back on Monday. I hope every thing goes well.
TUESDAY. woke up 6-am. After dressing my self, wake Abeerah and khansa up, make their clothes ready and give both of them bath. Khansa love taking a bath so she was so happy this morning but Abeerah was really not in good mood. She was making a lot of complaining noises. Wake Bilal up. He also want to take a bath this morning so set the water for him. While he took bath, I dress Abeerah and khansa. Wake Zahra up. Make Bilal's clothes ready, and took him out the tub. He start dressing himself. I gave Zahra bath and make her ready for school. Zarrar make every ones milk glasses ready. Girls drink while i put shoes on them. Make lunch fro every one. Make every ones bags ready for school. Abeerah, and khansa bus came and Zarrar help me with Abeerah then left with Bilal to his bus stop. I put khansa in the bus. After their bus left, Zahra's bus came and i put her on the bus. She love to go to school. Kids gone to school and i clean up the house. vacuum every where. The make breakfast for my self and Zarrar. But he was so tired working all night long, He fall a asleep. I wake Ammar, gave him bath and dress him. Feed him breakfast. Then her teacher came and he got busy with her. I took shower and dressed while Ammar was busy. After his teacher left, we went out to buy some fabric, zipper and elastic. when i get back, it was time for zahra's bus. it was half a day for her today. Zahra came home happy. She play outside with Ammar. She completely stop talking. She just stair at people. She use to run and give me hug but now she more like stair at me. she looks more scared of every thing. She keep twisting her tongue in her mouth all the time. I cook lunch. Ammar speech therapist came and he got busy. I took Zahra and we went to get Bilal from his bus stop. Zahra loved walking outside. She was so happy. we took Bilal and walk home. Bilal keep jumping in to the pile of leaves. speech left and kids watch TV. Abeerah and khansa came home. I get them off the bus one by one and bring them inside. Took jackets and shoes off. Make them comfortable. Give them juice to drink and put TV on for them. Zarrar woke up and took Bilal to musjid for his Quran class. I did some sewing while kids watch TV. Zarrar came back, get ready and left to work. After i feed dinner to every one. Help Bilal his homework. Make every one to ready fro bed. Put them to bed. Clean kitchen and did some more sewing. Did some packing for our trip to Arizona. Then went to bed.
Need your prayers for Ammar. He turn 2 yeras old and do not talk yet.
Plaese stop by and sign our girls guest book to let us know you care.
Thanks. Tayyaba Beg.
Friday, October 10, 2005 10:22 PM CDT
RAMADAN MUBARAK Have a blessed Ramadan.
Blessing month of Ramadan is here. Starting from October 5th 2005. I went to sight the moon and i am so happy and bless to see it this year. This is month is a time for spiritual reflection, fasting, prayers, doing good deeds and spending time with family and friends. The fasting is help teach us self-discipline, self-restraint and generosity. It also reminds us the suffering of the poor, who may rarely get to eat well. This whole month is blessing. Miracles do happen in this month. I request to add my family in your prayers.
THURSDAY. Woke up 5:30am and eat my saher and make my prayer. At 6-am wake Khansa up. Make her ready for school. Abeerah had her hearing test appointment today so she was not going to school and i let her stay in bed. wake Zahra and Bilal up. Then make them ready. Zahra do not like to get up and want to keep sleeping so its more like i carry her to the bath room and wash and brush her teeth and get her dressed while she strugle with me. Bilal is kind of slow in getting ready so i have to keep reminding the time to him. I bring every one down stairs. Zarrar make their breakfast and morning shakes ready and help them drink. I made lunches and pack their bags. After putting jackets on, Zarrar went to drop Bilal to the bus stop and i load Zahra and then Khansa in the bus which comes same times at 7:30-am. After i clean the kitchen and bathroom. Wake Abeerah up, Make her ready, bring her down stairs and feed her breakfast. while she watch TV, I get dressed. Put jacket on her, belt her in the car and put her wheel chair in my car. Reach to the hospital for her hearing test and she was going to have her hearing aids programed today with new molds. After registration, we waited in the waiting room for hour. Abeerah start getting upset and start kicking and making noises so i ask the assistance if there is still wait so we can go up and see Genetics first which we had an appointment with. There was wait still so we went 2nd level. after 10 minutes wait i see Dr. Wallerstein. We talk a bit. He gave me bags and cups to collect urine for Abeerah, Khansa and Zahra's to test GAG level and also Ammar's for his genetic testing to see what is wrong with our little guy.
I came back to audiology and after more wait we finnaly saw Dr. Rosemary. They try many equipments to see her hearing level which i think she had improvement but Abeerah do not like to sit still and do not want to cooperate. we got scadual for an ABR which they have to give her anesthesia so we do need to meet an anesthesiologist (due to her comlications of small air ways) before ABR. Make appointment for Ammar's evaluation also. Dr. gave me Abeerah's hearing aid setting on mild setting till she have her hearing test (ABR)done. I load her and her wheel chair in the car and came back home. After feeding and calming her down. wake Ammar up, which he was still sleeping thanks to his father. feed him breakfast and make him ready for his speech therapy. Speech came and he got busy with her. I get to wash a load of laundry. Then went to pick Bilal up from bus stop. Came home receive Zahra from her bus. Later Khansa came home from school. Give every one there medications and shacks. Cook dinner and Iftar. Zarrar and Bilal went to Iftar and pray with their food and i open my fast at home. Feed every one and give them their last shacks. Zarrar left fro work. Make girls ready to bed. Took them up stairs and put Abeerah and khansa to bed. Clean the kitchen. Help Bilal did his homework. Then put Zahra and Bilal to bed. Ammar stay up with me. I made my prayer. Put Ammar to sleep and went to bed at 2:30-am.
Don't forget to sign our guest book to let us know you stop by. Its means so much to us.
Tayyaba Beg.
Wednesday, August 24, 2005 1:44 AM CDT
i am sorry about no update for while. This summer vacation been really busy for me. I did not had any help. Vacation is almost over. School will be open on september 6th.
We continuously seeing difference in girls with new soy diet. Its been 8 weeks since we start the soy diet. Its like time went six months back.
Abeerah. Abeerah did very well first four weeks. She had a great improvement in her. Then she slow down again. I still see her improving but slowly. She is standing up again. She have much better eye contact. I feel her hearing is better, She turn or get scared on loud sounds. First four weeks of diet she sleep well but now she having a sleeping problem again. She is making lot of noise all day long.
Khansa. She is doing good and improving slowly. She is more alert and giving more response to her name. She is sleeping better through out the night. Her walking is improved but she still limping a little. She is full of energy all day long. She is more alert all day long. She start saying "Allah" a lot like she use to say couple of year ago. She also said "hurry" which she use to say when some one come to our house.
Zahra. She have great improvement even she is still giving me hard time taking her shacks and her genestein dosage. She is singing back again. She saying some of the word that she stop using 6 months ago. She is not crying so much like she use to before starting genestein. She definitely have more energy to do more wrong things here and there to keep me busy. She always up to some thing. She show affection to anger or happiness. She is bit of shy when i look at her. She love lots of hugs and keep hugging every one in the house. I am worry about her tongue twisting in her mouth habit. She is doing that all day long.
We still facing many many daily challenges with girls behaviors. We are continuously giving them genestein, reliv(soy shacks), soy products and vitamins and hoping for continuous improvements in them. Need your prayers and supports.
Ammar Ammar still not talking yet. He is 22 months old. He is getting therapy three times a week from Early Intervention. He start babbling a lot. Some times he do hand motions when i sing poem to him. He is also taking soy shacks twice a day. We need your prayers for him to overcome of his delays and there is no serious illness involve.
Don't forget to sign our guest book to let us know you stop by. Its means so much to us.
Sunday, July 24, 2005 7:38 PM CDT
Summer is heating up here. Zarrar start his new job recently . Actually he got transfer from NY to NJ witch he wants to do for long time. we are exited about it. He use to sit in traffic for hours to get to work and specially coming back home. He use to leave the house 4am and reach home at 8pm. He start night job so he can come home in the morning and give me hand making the girls ready to school since its got really hard for me making 4 kids ready at the same time in the morning and also help me out getting them from the buses in the afternoon. i hope he settle with his night routine.
Bilal is home for summer vacation. Girls have just a half a day at school and Ammar is very active toddler, he start getting his speech therapy thee times a week. Zarrar is home during the day hours. Lilly who help me with my laundry is away for month. Girls become more active and their timing for medication and mixing shacks. Feeding and dipper changing. I am trying to keep up with every thing around here. i am sorry about no update for while.
We continuously seeing big difference in girls.
Abeerah. Abeerah did so well first week and we see great results. She start walking again. She can walk without fall or tripping over. she walk up and down stairs by herself. I use to carry her before. She become very active and very alert. Good eye contact. More energy. I also noticed her hearing is better. Then she had a bad last week. She cry day at night for three days. It was so hard to take care of her when she was jumping 24 hours. It was so difficult and frustrated not knowing what is wrong with her then going to the Drs. and try to find out what is going on with her. Finally we find the reason. Every time she eat any thing she start jumping up and down. It was reflex so we have to stop the Genestein study for a week. but she is back on it now since her reflex is better. She is just been on it for two weeks but looks like clock turn back for six months. I am praying for more improvement and hoping her stomach stay ok.
Khansa. Khansa is taking 131-mg a day with food. She is doing good. She is more alert and giving more response to her name now. She is not drooling any more. She is sleeping better through out the night. Her walking is improved but she still limping a little. She is full of energy all day long.
Zahra. She have great improvement even she have hardly taken her full dosage. She is singing back again. She saying some of the word that she stop using 6 months ago. She is not crying so much like she use to before starting genestein. She definitely have more energy to do more wrong things here and there to keep me busy. She always up to some thing. She show affection to anger or happiness.
Don't forget to sign our guest book to let us know you stop by. Its means so much to us.
Saturday, July 9, 2005 2:48 PM CDT
I am sorry for not updating. Actually we took a trip to Indiana for couple of days in 4th of july week. We had a great time there with whole family. When i return, I have to catch up so many things and prepare for girls to start summer school.
Many of you already know that we have started a trial study with our all three girls (Abeerah, Khansa and Zahra). It is unofficial here in the USA, but very low risk. We are using Soy Isoflavones that are rich in genistein. It is now has official approval in Gdansk, Poland to be used as a trial with humans. They will be starting in July. So this is truly groundbreaking new possible treatment. We have only been on the genistein for just over a week and seeing results. We are really exited about this. We are hoping for best results. Only time will tell, and it will take time, not just days. There are more children now in the USA that will be trying this also. So please keep all our children in your prayers. As we do not know long term effects yet. Only time will tell.
Abeerah.
She is taking 100 mg with breakfast. So far taking it with no problem. I mix with juice or yogurt and some time with apple sauce. I see she is more energetic and and more alert. She getting up her self without my help which she did not do since long time now. I also see she is hearing better. She still have sleeping problem. She is babbling a lot.
Khansa. She is taking 100 mg with breakfast. She is more alert. She stop drooling. I use to change her shirt couple of times a day but now she don't need it. She is not crying too much. She have more eye contact. Her neck did not locked up since couple of days.
Zahra.
She is the hard one to take the pills. I am still not succeed making her swallow the whole dose. She hardly have taken in the whole dose. i struggling with her a lot. I try to mix in yogurt, Ice cream, apple sauce, Juice, milk and banana. All her favorite things but she know the taste. as soon as she feel the taste, she spit right out. She is still on 50 mg because due to our trip to Indiana, she did not take her proper dose because of all running after and struggling to make her swallow. But i see some difference in her. I see she is using some words back. She use to say BBa Bba to barney but now she say clearly Barney. She is making more loud noise than ever. She is not crying as much she use to cry before we start this. If any one have any idea how to make her swallow these soy pills. i really appreciate that.
I also order soy shaks and other soy foods for the girls to complete their soy diet. Due to these products are very expensive and we buying for all three girls. We need your help to save our daughters. Any one wants to send any help or wants do a fundraising for our girls, we really appriciate that.
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Friday, July 1, 2005 4:33 PM CDT
Day 1st. I start my girls on it today. I start with 25-mg each of them. It is not that easy that it seams. I mix it with apple sauce. Abeerah eat it with no problem. Khansa took it no problem but zahra spit right out and i have to chase her around the house then i mix with yogurt because she loves eating that. But she did not want to swallow it. she spit right out. I am going to have real fun with this. I also want to start them on soy shacks and other soy products plus lots of prayers too.
Day 2nd. Today I increase the dose as plan. Give them 50 mg twice a day. Today i mix it in the juice but Zhara did not drink it at all. She is good with her tast and she never like any thing not tast good. In the evening i mix it with yougurt first but no luck with zahra then i mix it in the ice cream but she did not want it. I really try to force her but in the end i am the one who give up. Abeerah and khansa took it with no problem. I di dnot see any difference yet.
Ammar still have no improvement in his talking and communications. He is not making an eye contect. I am so worried about him. WE NEED YOUR PRAYERS.
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Monday, June 27, 2005 6:04 PM CDT
Abeerah have more of her hearing lost than before. I drop her hearing aids to fix and new mold also going to be made. She also having a hard time focusing.
FRIDAY. Zahra cry all night long so i did not had much sleep. i try to put her sleep but she cry and every time my eyes close she start crying again. Finally she fall a sleep and Zarrar left to work so i went to bed. wake up 7:30am and call the bus company that zahra not going to school. Today wad her last day at school. But i knew if i wake her up now when she did not had enough sleep, she will cry all day long. Call my husband and ask him to give me call to wake me up in hour at 8:30 AM. He forgot to call and i woke up 9:00 Wake the girls up and make Abeerah, khansa, Zahra, Bilal and Ammar ready(brushing teeth, Diaper change, clothes change and put shoes on them). Then i got dressed. We had a plan to go with Elaine( she is very nice and good friend)to go and see a waterfall close by which we been planing for a year but every time some thing comes up. Today we both agree on going and I did not want to miss it today because i love water falls. She reached here 9:30am and i was still in middle of putting shoes on kids. Van seats were taken off by my husband for some moving stuff. I put them back up, Elaine helped me in that. Buckle kids in the van and follow Elaine car. Reach at the water fall and it was not handicapped accessible and there is no place to sit either so Bilal and Zahra walk with me and Elaine watch Abeerah, Khansa and Ammar in the van while they watch barney. It was so beautiful. i loved the waterfall. tons of water falling from high. It was breathtaking. The bridge we walk on was really high and feel dangerous. I really enjoy those couple of moments in water falling loud sound. The i came back and Elaine went to take a look. Ammar also loved watching the waterfall. I want to take them to the zoo but it was middle of the day and animals disappears at this time of the day for rest. We drove back home. I bought bagels and cream cheese and eat in our backyard. Abeerah was really slow today. Kids play for while. We all came inside. Kids watch movies and i clean up little. Drop Bilal to the musjid and I cook dinner. Pick Bilal up. Zarrar came home 8:00. we all eat dinner. Make girls ready to bed. Carry Abeerah upstairs. Abeerah hardly moved by herself today but she looks better then yesterday. Bring Khansa upstairs and put both to bed. Bilal, Zahra and Ammar stay up. They play with their toys. Zahra did her usual crying for while then she fall a sleep. Then Bilal and Ammar went to bed. I check my mails and write some mail on my computer and went to sleep. Bilal and Zahra having good time at the waterfall.
SUNDAY Woke up 9:00amCheck on the kids. Only Khansa was up and every one else was still sleeping. Little later Zahra woke up and that was it. Zahra do not let any one stay sleeping. So she was on waking every one up. I took care Abeerah and khansa first and bring them downstairs. Then I took care Ammar's morning needs. Then Take care Zahra. She take lot of my energy away because she fight while i wash or change her. After i done her i was huffing and puffing already. For Bilal i have to yell for while to send him to the bathroom so he can brush his teeth and wash his face. He was really exited today because we were going to the beach for MPS picnic. Zarrar was outside in the yard. Bilal wants egg and Tost and so is his father so I made breakfast for every one. while zahra keep doing some thing to take my attention. She broke two eggs, drop, glass of milk, turn stove off 4 times while i was cooking. throw every thing out from the refrigerator and.....I feed Abeerah. she been slow eater last couple of days. She take her time chewing and stop then chewing little more and stop. After she done eating feed Khansa. She take food out of her mouth and check with her fingers and then put it back in her mouth. Zahra eat her self but she feed the whole house with her self too. After every one done with their breakfast, clean up the kitchen.
Pack bags for going to the beach. Drop Bilal to sunday school. Took girls upstairs and give them bath and dress them. Then make Ammar ready. Pick Bilal up from the Musjid and make him ready. Got my self ready. Zarrar got dressed. He empty the van from the garden stuff he bought yesterday. It was really hot today. It was 3:00pm so we pack the kids in the van. Some reason i got the time wrong. I thought starting time is 4:00pm that i found out in the way to the beach when Zarrar actually read the paper that i gave him week ago for directions. He was upset with me and want to turn arround because he said we will be look bad going in the time of every one leaving. I really want to go and meet every one, it was my fault because i miss understood the NOON part. Bilal wants to see the beach too so we continue driving. Traffic on the bridge was really slow. It took us almost two hours that we thought will be hour drive. Our AC in the van was not working well and every one did not liked when we stop on red light. We reach there and meet all the MPS families. Beach was great and weather was perfect. It was nice to meet Joan. She was the host. she did a great job arranging it. Sorry we did not make it on time to enjoy every thing. I felt so terrible about it. Her son Andrew had hunter and he is 24 yrs. old. He looks very good. Her daughter Hope was beautiful girl. And we meet Robin, her son Logan, 2 yrs. old and have hunter. I know the family from the forum. It was nice to meet them finally. Sad i could not spend more time with them. I also meet Isabel from CT. Her daughter is 15 and have MPS III-A, so is Bobby who was 9 1/2 yrs. old. They were from BOSTON. I talk to them while Zarrar run after Zahra. Bilal went in the water with a teenage boy came with one MPS family and he loved it there. It was really beautiful there. Every one start leaving so we start packing up too. It was really nice meeting MPS families. Joan gave me lot of left drinks and stuff. Way back home we miss the exit and lost for while. Reach home by 10:00 and every one was hungry so I cooked and feed every one. Kids were tired. Put every one to bed. clean up the kitchen and went to bed. It was a great day to remember.
Ammar still have no improvement in his talking and communications. He is not making an eye contect. I am so worried about him. WE NEED YOUR PRAYERS.
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Thursday, June 23, 2005 7:23 AM CDT
Abeerah had her hearing test. she have more of her hearing lost than before. I drop her hearing aids to fix and new mold also going to be made.
Abeerah seems having a hard time focusing. I am in search of an eye Dr that can see speacial need children. so we can have her eye Exame done. She have an eye exame in school recently but failed.
Abeerah had a really rough 5 days. But she is calm down on now. I stop all the medications on her because medication have bad side effects on her. she mostly stayed calm all day yesterday. She stay home and stay lying down all day. Went to sleep early and slept good all night long.
TUESDAY woke up 6: am. Start with waking Khansa and give her bath. she is so thin that i feel scared dressing her. I feel that i might break her. I have to be very very gental with her. She start crying if she get touch hard. After dressing her, Wake Abeerah up. she was very sleepy and very slow. Took care her morning stuff and dress her. Zahra woke up and her diaper need to be cahnged so i took her to the bathrrom and put her in the tub, wash her and let her play in the tub with little water on and ran back down to feed Abeerah and khansa before their bus arrive. I was running up and down. After feeding them breakfast, school bus came and i carry both of them to the bus one by one. After they left, ran back up and dress Zahra. put shoes on and make her lunch and feed her breakfast. Bus came 10 minutes early which make me run faster. After she left, wake Bilal and tell him to get ready . He wants to take a shower. After he got ready we ran down stairs and put some snack in the bag for him, Bus came and he ran out. I clean up the house and I felt tired so i went to sleep for hour while Ammar was sleeping. We both woke up and play a little. I dress him and we both went in the kitchen. Make his bottle and make cup of coffee for myslef. Bilal came back from school and then Zahra arrived. i fill some papers for schools. Later put every one in the van, drove to the library to return books and get some new one for Bilal. It took lot of my strenght chasing after Zahra. Got the new books and tapes in a bag. Find Bilal, Zahra and Ammar and keep them together to leave the library. Drove back home. Abeerah and khansa arrive in bus. put them in the van. Abeerah looks very tired. Bus driver told me she looks very slow. I had a plan to take them to the park but it start raining, drove to the bank, deposite drive through. After that to the meat store and buy some meat. Drove to quick shop and buy some more groceries and milk. Came home and bring the kids in one by one and bring the groceries in. I bought box of mangoes too but when i open the box, all the mangoes was half eaten and some left with just a single bites on them. Find out it was Zahra who eat all the way home. After kid settle down and watch their movi. Make Bilal reaady for his class, send him to musjid. Cook dinner. Zahra cry and push and beat me the whole time. zarrar came home. Feed every one dinner. Abeerah did not eat. i put food in her mouth and she did not chew it. I try and try. She hardly eat couple of bites. I gave her drink but she do not drink a sip. It was not like her. She is a very good eater and never know when to stop eating. She stay lying down the whole time since she get back. Very very hyper to very calm. Both hurt me. Make them ready to bed. Carry Abeerah upstairs to her bed. Then put Khansa to bed. Zahra cry for hour and then fall a sleep with Bilal. Ammar play arround late. Every time i close my eyes, He jump right on my nose. I rock him to put him to sleep. we both went to sleep. Wake up again withen half hour with Zahra's crying. Bring her back to my bed and we both went back to sleep.
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Friday, June 20, 2005 0:32 AM CDT
Abeerah had her hearing test. she have more of her hearing lost than before. I drop her hearing aids to fix and new mold also going to be made. Abeerah’s ABR got canceled because her hearing aids not return to Dr yet. They will call me when hearing aids and molds are ready.
Abeerah’s eye balls in motion all the time. She seems having a hard time focusing. I am in search of an eye Dr that can see speacial need children. so we can have her eye Exame done. She have an eye exame in school recently and she failed.
WEDNESDAY. woke up early when Zarrar was getting ready to go to work. After he left, i went back to sleep. Wake up at 6:am and wake Abeerah up, Khansa was already up. Make them ready for school. After both of them left, wake Zahra and give her bath, make her lunch and feed her breakfast and put her in her school bus. Wake Bilal and send him to school. After they left, i clean up the kitchen but my head was hurting bad so i went back to bed. wake up afternoon when Ammar woke up, give him his bottle but my head was hurting still and i feel like throwing up. so i took medication and stay on the sofa, Ammar play next to me. BIlal came 2:pm that time i gotten worst and start throwing up. Back and forth to the bathroom. when it was time for girls bus to arrive my condition was, unable to stand so call my husband. He got worry too. Buses came and Thank GOD for Bilal, He help out to tell the bus drivers that i can not go out to get them so driver drop them at the door and i bring them in. Take their shoes off but feel like falling to the ground. I call Lilli to come and help me out. She came and change their diaper and give them juice to drink. Ammar was crying so Bilal took him out in the back yard to play. He love to jump on tramp-lain with his big brother. My friend Asma stop by, she comes over some times after dropping her son at the musjid and she help me feed the girls. While Lilly clean up the house. After both helping ladies left(Thank you so much), I felt little better by then but still pains in my head. I order pizza. Zarrar came home from work. He put all garbage out side. Pizza came and we all eat it. After that i make the girls ready to bed. After putting Abeerah and khansa to bed, read story to Bilal and put him to sleep. Ammar and Zahra fall sleep after play for hour. I did some paper work and fill some forms for schools. My head start hurting bad again and start feeling noxious so i took some Tylenol and went to bed.
THURSDAY. Woke up with headache but i have no choice than get up. Make girls ready for school. Brush their teeth, comb hair and change diaper and clothes. put shoes on them. Feed them breakfast and make their bags ready with every thing they could need in school. Their bus came late, After Abeerah and khansa left, i have only 7 minutes to make Sahara ready. wake her up, she do not want to be up and cry that make hard for me to make her ready. I could not find her shoes. looked every where and her bus came. quickly put her old shoes on that i put it away in bag. Gave her milk glass to drink and put her on the bus. Wake Bilal up and he wants to take a bath. while he was in shower Ammar woke up and he is in love with water, he ran to the bathroom and jump in the tub with Bilal. so i have to dry him and dress him with dressing Bilal. After Bilal left to school, Middle of my head was hurting too much so i went back to bed. Ammar play around me and then he took his bottle and went to bed next to me. I slept for couple of hours. Bilal came home early he is going to school only half a day till school closed on 23rd. I clean up little. I call genetic and he told me the good news that Ammar results came negative of MPS and also Bilal results came negative for MPS. I was really happy that it is not MPS. It felt big rock off of my shoulder. Now Ammar have to see Dr Wallerstein (genetic) on monday to see why he is delay. I get dressed and make Ammar ready. we went to Target to return some stuff and Bilal need shoes for summer. We shop fast and came back home right on time for girls coming home. Zahra came home happy. Abeerah was crying really loud. Bus driver was upset. she told me that it was hard for her to drive if girls cry and Abeerah cry all the way home. I bring her inside but she was screaming out loud. I make her comfortable but she keep crying and jumping. I check every thing to see what could be bothering her and i feel she is in dental pain. Gave her Tylenol and call her dentist. He was almost out the door. He thought she may be having a new teeth so i should give her some thing to chew and give her Advil for pain. I did every thing. Zarrar came home and he try to comfort her but She cry and cry. Nothing seams to help her. Zarrar left to his meeting. I use Orajel for her teeth but did not help so i put all the kids in the van and went for driving. I know driving make her calm. But she scream every second. It was hard to keep her on the seat. Zahra start crying too. We stop at Dunkin Donuts, get coffee for my self because my head start hurting hard and i start feeling noxious and donuts for kids and feed them. Bilal have a letter for Karen we drop by her house and gave her letter. we drove back home. Zarrar was coming home so he help me bring the kids inside. Gave Abeerah medication, brush her teeth and put her to bed. Put khansa to bed. Abeerah cry for while then she fall a sleep. Poor girl cry a lot today. I hope she feels better tomorrow. Bilal went to bed, He have a big day tomorrow. His graduation that he been counting a days since a month. He is graduating from Kindergarden and going to first grad. Zahra cry for while then went to bed and fall sleep with Zarrar. Ammar stay up with me and play with blocks. My head giving me hard time. I guess it is time for me to see a Dr too. I make kids clothes ready for tomorrow. Abeerah have a appointment with dentist 8:30 am and Bilal's graduation 10:00 am. Both are so important, I hope i can make both places on time. tomorrow.
FRIDAY Woke up 6:am. Zarrar stay home today for Bilal's kindergarden graduation day. Abeerah cry most of the night. she slept for couple of hours. When i wake khansa up to make her ready for school, Abeerah woke up too and start crying again. She was crying and jumping. I make Khansa ready and Zarrar help me put her in the bus. After she left to school, wake Zahra and make her ready. And woke bilal up, He jump in shower. MAke Abeerah ready. It was really hard to change her diaper and put clothes, shoes on. She was kind of slipping out of my hands and screaming. Pain killer did not work a bit since yesterday. After Zahra left to school and i made Bilal ready for his big day, Zarrar help him in his breakfast and i left with Abeerah to the dentist. Dr was not there yet. I have to wait about 20 minutes with very hyper crying Abeerah. Dr Jackson checked her and told me that there is nothing he can find that could cousin that much pain to her. Then he run a x-ray and find out bunch of teeth coming on top in a room of three teeth. He thoughts that could be causing a pressure and he removed two of her front baby teeth to give new teeth to grow. That was it but Abeerah did not calm down. But Dr have nothing else find that could be hurting. II came home, gave her pain medication. I got dressed and wake Ammar but his for-head was so swollen, He have habit of banging his head on the floor when things don't go his way and every day he bang his head many times. He did not look good. Call baby sitter for Abeerah. It was getting late for Bilal's graduating so put Ammar in the stroller and we walk there due to no parking available today at school. Bilal came in line and all other kids. ceremony was great. Kids sing and sing then principle have little speech and after that kids went in to the classes and get their diploma in kindergarden. It was fun. After we bring Bilal with us. Zarrar left to get his car window fixes, some body break his window in the city and stole some stuff from his car. Feed Abeerah. it was so hard to feed her when she was not sitting still. Zarrar came back. We want to take Bilal out to make his day special but Abeerah cry so much so we have to return home. Zarrar and Bilal wet for Jumma. Ammar fall a sleep And i clean up. Evaluation team came for Ammar. we sat and did a lot of paper work. They ask a lot of question about Ammar. Ammar will get speech therapy soon. Abeerah was non stop crying. My heart feel breaking up looking at her. Khansa, Zahra came home from school. Zarrar came back and he cut the grass with Bilal. I order food. Ammar swelling on his for-head make me upset. After feeding all the kids, put movie for them. I want to take a bath because my head was in lot of pain. After 5 minute quick bath, i came out and Zahra standing with no clothes and diaper on. She looked at me and smiled and ran and SLIDE fast down stairs. i cam down and there a big mess was waiting for me. Zahra took her poppy diaper off and whole room, sofa and kids was full of poop. oh yeah remember sliding on the stairs too. Oh my GOD. Thing not getting any better.... Scream for Zarrar. He was out in the yard with friend. he help me carry kids upstairs. Abeerah, Khasna, Zahra and Ammar were thrown in the tub. I scrub and scrub, feet, hair and hands........it was so nasty, on top Abeerah was very hyper. she was not crying but out of control. It make Khansa and Zahra panic too. It was a true test of my patience. After bath, dress them all one by one. put them in their rooms and lock the stairs. And shampoo the whole room, sofa chairs. wash all the toys and scrub finger-paintings from the walls. And shampoo the stairs. Throw all the clothes in the machine to wash. I got so tired. Put every one to bed. Bilal was sleeping with Zarrar. I am glad he had a great day with his father today. Abeerah did not sleep till very late. she keep crying. My poor Abeerah. I fall a sleep around 4:am.
SATURDAY. Zarrar had to work today because he took off yesterday. He left 4.30 to work and i was so tired to even open my eyes. woke up 8:am with bell ringing. It was Lilli. She came for help. Abeerah was crying on top of her voice. My head was in pain. I bring Abeerah down stairs and gave her to Liili. Then i went back to bed. Woke up 10:am. All the kids was waking up then. Abeerah's crying was getting louder. Ammar woke up and his for-head have more swelling and her eye was half closed and turn red. I got so worried. Bring every one downstairs. Make breakfast and feed them all. Zarrar call and told me that he is having a surprise party for Bilal. I call the Dr and make appointment for Abeerah and Ammar. Their Dr was not in the office today so have to see some other Dr. Got dressed. call baby sitter. Put movie for Zahra and khansa. Driving was hard when Abeerah was crying so much. After a little wait, Dr see both of them and told me i have to go to ER with both. Ammar could hurt his scull and he do not know what is wrong with Abeerah. He call the hospital for Ammar coming to Er. GAve Abeerah drowsy medication. I call Zarrar and he told me that he will take off and meet me home. Abeerah was so hyper that he keep getting out of her seat belt. I cry coming home with so much to handle and pray for Abeerah to get better. I stop at the way home for abeerah's prescription. Gave her medication as soon as i reach home. feed Ammar. By then abeerah got little calm down. Mrs James was still here but she can't change dippers or feed any one because she is very old. I change every one diaper And left with Ammar to ER. After registering call in the room. Dr came to check him and she want to run X rays to see no inner bleeding is going on. WE send to x ray room and try an hour to get a right x ray. They run about 12 x rays on him to get the right picture. I was really upset with that. Came back in the room and DR came about in hour to tole me that there is nothing wrong with him. It just a swelling and it will go down in couple of days. Thank God. after discharged. drove home. Stop at the meet place to get some chickens. CAme home, abeerah was really calm and quite. Make me so relax. Zarrar told me his family coming for party in little bit. change diapers, clean up. Feel worries took a break. i dress and cook some snack. It was surprise for Bilal so make every thing sneaky. we all have a great party for Bilal. Cake was really good and every one had a good time. Abeerah stay on her wheel chair and fall a sleep so Zarrar put her to bed. After people left. I clean the kitchen. Kids went to sleep early today with all the running and playing make them tired. and i Thank God for Abeerah to get out of pain. I hope tomorrow is going to be a good day for me and for Every one.
HAPPY FATHERS DAY TO ALL DADs.
I am so releav to find out that Ammar's urine test for MPS testing came negative. We also test Bilal as well. Both boys do not have sanfilippo Syndrome. ALHAMDULILLAH. I hope Ammar can over come of his delays with therapies.
WE NEED YOUR PRAYERS.
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Monday, June 6, 2005 2:46 PM CDT
Abeerah had her hearing test on thursday and she have more hearing lose than before. I drop her hearing aids to fix and new mold also going to be made. Hearing aids and molds need to picked up in two weeks and she need an other ABR that is on 9th of june.
SUNDAY. woke up 5:00-am and my brother was getting ready to go back. He was here for week vacation and we had a great time. Bilal really love him. Last night he was really made that he do not want his uncle to leave. Zarrar drove my brother Shoaib to the air port to drop him off. I check on kids all were sleeping. Girls start sleeping little better since last couple of weeks. I went back to bed. Woke up back around 9.00, Khansa was up and i took care of her and bring her down satirs, give her milk to drink. Then zahra, Abeerah and Bilal woke up and after taking care of their morning needs, bring them down stairs. Bilal went outside to play and i got busy making breakfast for all. Zarrar was busy working out side with a guy who is fixing and putting new safety doors for the girls. After done with breakfast, clean up the kitchen. Put barney for girls to watch and make Bilal ready to drop him at sunday school. Ammar woke up and take care of him. Zahra was really hyper today and she keep moving here to there doing some thing. She always up to some thing to keep me busy. By 1:30-pm, went to pick Bilal up. Zarrar was really hungry so is kids. I did not want to cook any thing inside because it was hot today so i cook on the grill outside. after all done with lunch. Girls rested while watching tv. I work some on computer to find cost of flight to the conference to Arizona. it come out to $2000 to for round trip for 7 people. wow. Next door girls came to use the computer because she don't have it. I change diapers and clothes for all and putt shoes on them. took every one in the back yard. Kids play around. bring them inside and make them comfortable. Bilal wants to go to Karen's house because Bilal wan t to drop a letter he wrote to invite her to come to his graduation. I start making the kids ready again but zarrar have to drop off the guy working with him and when he return it was late for me to go because karen have to go to work. we stay home and Bilal did not like that so i cut watermelon and we all eat it out side. After that i make every one ready to bed. It was hot in the rooms. i look for fans and put them in every room. Put girls to bed. clean up. Zahra cry loud for while as always. I read books to her to make her stop crying. Zahra and Ammar stay up till late night. then we all went to bed.
I drop Ammar's urine for genetic testing. Result will be back in two weeks. I am praying he do not have stinky MPS. Need your prayers for normal results.
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Tuesday, May 24, 2005 0:13 AM CDT
SATURDAY
Woke up early. Zarrar was already left home to take care some stuff. Kids were sleeping. I spend some time online. Abeerah and khansa woke up around 9:00, After taking care off them, Bring them down stairs and give them milk to drink. Lilly came to help me out, she comes on Saturday to wash and fold clothes. I call the Dr Tantawi's office to pick up papers that i give her to fill them up and have to take Ammar to see her because he been coughing a lot. Dr. was available at 11.30. zarrar came back with his friend to work in the yard. We cut some trees and so many stumps are all over the yard, before kids fall on them, we want to remove them. I wake Ammar and Zaire up, make both ready got my self dressed, help Bilal wash and dressed. It was time for me to leave but same time i smell abeerah and khansa need diaper attention. Done changing them but still need to feed them breakfast but it was getting late for the appointment and it is about half hour drive to the Dr office. Call Crystal to watch Abeerah and khansa and told lilly to make breakfast for Bilal and girls. Reach at Dr office late and i had to wait for 20 minutes. Dr sign all the papers and give medication to Ammar and Zahra. Get prescription for khnasa's medication and drove home. stop in the way home and get milk. After reaching home, change all 4 kids diapers. made sandwiches for boys working in the yard. After feeding girls lunch, bring them in the yard to walk around. While kids play around, i plant some flowers. We all got tired so we came inside, cook dinner and feed every one. Khansa was not feeling too good. I made Abeerah and khnasa ready to bed and put them to bed. Zarrar came inside after all day working out and boy he was tired. He remove seven tree stumps. That is a hard work. he eat his dinner. Bilal wants to go see "STAR WARS" and zarrar promise to take him so i call baby sitter to come and watch ammar and Zahra. Abeerah and khansa was sleeping. We went for 11-o'clock show but got lucky and reach there right before the movie starting at 10.40. Bilal fell a sleep in between. It was good but sad story. Came home late, Kids were still awake. so make them ready to bed and we all went to bed. Abeerah woke up by 2.00 am and she was not happy. I gave her some juice, change her diaper, After she calm down , i wen back to bed.
SUNDAY
Did not do much today. Zarrar was really tired from yesterday work and it rain most of the day so we all stay in. Zarrar work on his computer. Khansa had a bad runny nose and i have to keep wiping her nose. I spend most the day in kitchen Making and feeding big breakfast for seven. then lunch and then dinner. Did some cleaning. Kids just play around and watch TV. Abeerah was really calm and she stay sitting and some times lying on sofa. she kept her hand on her back, That mean her back was in pain. If she is in pain then she will keep changing her position, Poor girl. Give her Tylenol for her pain. After dinner make kids ready to bed. Abeerah did not sleep till 12.00. Zahra start crying at night as usual and just follow me around. After cleaning the kitchen, I went to bed lie down with Zahra and she fall a sleep.
MONDAY. I woke up last night after just having an hour sleep with Ammar crying. went down to kitchen and get his bottle, But he did not want to go to sleep after finishing his bottle. He just keep jumping on me. He kept me awake till it was time to wake Zarrar up to go to work. After he left, Ammar and me fall a sleep. Two hour later it was time for me to be up and make girls ready for school. I hate this time every day, Hardly getting to the dream part..... wake Abeerah and give her bath, make her ready for school. I try but khansa feel not good and she did not want to be up so i let her stay home. After Abeerah left, wake Zahra up and give her bath and send her to school with her lunch. Then Bilal's turn. He took bath and get ready. He gives me hard time in dressing, he like this and don't like that to wear stuff. After he left, My head was spinning and in so much pain. I did some quick cleaning. Fill some forms out for early intervention group was coming today. But i had to have some rest first so call Zarrar to wake me up in hour. woke up 10.00 and dress Ammar, and dress myself. Feed him breakfast. And wait for the team to come. They were little late. But it was nice to meet them. They evaluate Ammar by giving him different toys. And keep asking me question. In the end they gave me report that Ammar have 33 elays in his communications and speech. he need to get his hearing test done and genetic testing done to make sure it is not MPS. They told me that speech therapy will start soon. It was so heart breaking for me. after they left i cry for hour. call good friend Kathie and vent little. Then call Zarrar and told him. Then talk to my cousin Amina for sec.
I am praying and hoping it is just a delay not a stinky MPS. we need your prayers
Bilal came from school and get busy coloring. I call to the hospital and make appointment for Ammar and Abeerah's hearing test. Abeerah need a new molds for her hearing aids as well. Also call genetic and make appointment with them too. Zahra and Abeerah came home take care of them, Feed all of them. Make Bilal ready and took him to musjid. I did not want to cook any thing so just make small snacks but later end up ordering pizza. After feeding every one, Give medications to Ammar and khansa. and put them to bed. Ammar stay up late. Tomorrow is another busy day with appointments.
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Wednesday, May 18, 2005 7:28 PM CDT
TUESDAY.
Zahra did not slept till 2:30 in the morning. She was crying a lot so i keep her holding till she fall a sleep. It was time for my husband to go to work so wake Zarrar up to go to work, after he left i went to bed. But i just had two hours sleep when my Alarm start ringing. I turn it off and want to have more sleep but Zarrar give me a wake up call and my alarm and phone both was ringing out loud. Before whole neibours wake up i had to be up to make girls ready for school. At 6:00 I wake Abeerah up, Give her shower, dress her then wake khansa, poor girl want to sleep. give her shower, dress her and bring both of them downstairs. Khansa walk down stairsbut had to carry abeerah. Feed them breakfast. Put shoes and jackets on them. It is still kind of cold here in the morning. Since school start giving both of them vegetarian lunch from school, My life got much easier. After both left, wake zahra and make her ready. She is kind of hard to make her ready. Make her and feed her breakfast. She looks happy when she saw her bus. She been doing very good using some words. After her bus left, Wake Bilal up, he jump in shower. He start taking his own bath now. So one less to worry about. I make his clothes ready and after dressing he took his lunch and ready to go to school. i been trying hard with him but he do not like to eat breakfast and give em very hard time. After he left, I work on computer, My back was in lot of pain and i was sneezing a lot so i took my allergies medication. I can't take medications, they put me to sleep, that why i only take them when i really have to and kids not around. About in a hour i fall a sleep. I slept about two hours, woke Ammar up and feed him. He was chatting all over. Making funny noises. I clean up around the house. Bilal came home from school. He want to do some coloring before girls come home because he have hard time keeping crayons away from them and they eat them all. Abeerah and khansa bus and zahra bus came same time. Abeerah and khansa bus driver told both girls not feeling good. They sneezing and have runny nose. SICK....NOT AGAIN.....Bring girls inside and make them comfortable. put Barney on for them. Went in the kitchen to bring some thing for them to eat, when i return.. Oh GOD. Whole room was full of poop. Zahra took her diaper off and poop all over. I have to clean up big time. Lock Abeerah and khana in to their chairs. Carry Zahra to the bathroom upstairs and give her bath. She was really messy. After her bath bring her down satirs and put movie in the living room and bring abeerah and khnasa there as well. Shampoo the play room, all the toys disinfected and their feeding chairs, sofa, TV, windows, every thing need to be clean. Amina came to help. Nice girl, wants to help voluntary for school project. She help Bilal with his home work. After all cleaning, i cook fast. I have a plane to make big dinners but end up quick fried chicken rice. Zarrar came from work. he wants to make a flower bed. All the flowers i plant are growing big so i want to transfer them in the ground. We all went in the yard. Girls jump on the tramp-lain and we make a bed ready. It turn dark so bring every one inside. feed them dinner. Give them medication. Then i took Abeerah and khansa upstairs and make them ready for bed. after putting them to bed, but Bilal to bed, Read him story. Zarrar work on his computer and he crash right on sofa. Ammar stay up till 12:00 but Zahra did not sleep till late night. She cry every night. She went to sleep arround 2:00. My back was in lot of pain. so i have to have sopme rest. I hope i feel better tomorrow.
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Tuesday, May 10, 2005 9:25 AM CDT
MONDAY. Abeerah, Khansa are still suffering from flue. When it comes, it takes time. Specially with MPS kids it just takes longer than others to get better. Woke up and check on Abeerah and khansa. Both still not look well so i call the bus to tell that beg girls are not going to school today. Then wake Zahra up to make her ready, She was crying last night up late. I took her in the bath room to wash her face and she start sneezing one after other and her nose start running big time on every sneeze. That means no school for her either so i put her back to bed. But when she is up, she do not go back to sleep. Put her channel on for her and tell her bus for no pick up. Wake Bilal up and make him ready for school, Make lunch while Zahra keep going in to things and sneezing every where. I had a hard time stopping her from every where while hurry making Bilal ready before his bus arrive. After he left, i bring Zahra to my room and let her watch TV and put her to bed next to me. And lock the door so she do not get out if i fall a sleep. Woke up 11:00 am with Khansa's waking up sounds, Zahra and Ammar both were still sleeping on my both sides. Take care Khnasa. She looks happy and well rested. Bring her down stairs and give her warm milk to drink and put Barney on for her. Went back up to bring Abeerah, She was up too Carry her to the bath room, she looks still sick. after washing her face and changing her dress and diaper, bring her down stairs too and gave her milk to drink. Zahra woke up and she probably wake Ammar up because they both came down together while i was in the kitchen making breakfast. taking care both of them, i feed every one breakfast. Give medications. Clean up around the house. Bilal came from school. He was really exited because next week his trip going to the Zoo and he love animals, one of the thing he wants to do is to be a zoo keeper when he grow up. Bilal, Zahra and Ammar play in the back yard for while. Abeerah and khansa looks really tired and stay sitting on their chairs. I feed every one lunch and gave them juice to drink. i woke on fixing my sewing machine while every one play around me. Bilal need to find his library book so we all went to look. With all mean where ever i go Ammar and Zahra follow me so i follow bilal and both follow me and then Khansa follow us and came up stairs too. Abeerah was very slow to day, she stay sitting and watching TV. As soon as I found the book and Zarrar enter the door. He start his day 2:30am this morning so he was tired and hungry but i did not cook dinner yet so i made sandwich for him quick and order pizza. After every one eat, give medications and make abeerah and khansa ready to bed. Take them up stairs one by one and put them bed. Read book to Bilal and he went to bed. Ammar and Zahra stay up so i clean my drawers while both watch TV. then we play and play and read books but both of them did not want to sleep. Every time i turn lights off, Zahra get up and turn them on. then she took Ammar in to the bath room and both play with water, Both get all wet so i end up giving Ammar bath because he was playing with toilet water. Both stay up till 2:30 am doing different things and finally both fall a sleep. Check on Abeerah and khansa and both were sleeping good. I woke Zarrar up to go to work . I was really tired and my back was hurting so much so i went to bed. Don't forget to sign our guest book to let us know you stop by.
Saturday, April 30, 2005 8:29 PM CDT
Girls been home this whole week for spring break. I just stay home and take care the girls. Zahra been crying lot at nights so I took her to the dentist on tuesday and find out her new tooth is coming on top of the old one which is too early for her, she is just 4 yrs old. Her old one is also in good strong condition. So Dr. Jackson will see he within three weeks and we might have to remove the front baby tooth.
Snice Thursday, Abeerah and Khansa got flue and they been really cranky. Khansa not eating much. She chew it for long time then push the food out and cry during whole feeding time. Khansa been chewing her fingers a lot and drooling so much. I keep changing her shirts. Put the baby bibs on her but Zahra cannot stand her unusual thing on her so she keep taking it off from Khansa. Khansa also having a joint stiffness and cannot stand on her own some times. Her neck also stiff while she is looking up. I have to massage with oil to bring it to normal.
Abeerah hardly get up her own and stand or walk. She spend more of the day sitting down on top of her feet and crawling one place to other.
Got my van fixed and now I can take girls push chairs out. Auto body shop really did it fast for me. I have planes to take girls out to park or drive but weather been really bad and its been raining every day.
Still struggling with Ammar to make him say some words but he is not want to talk yet. Friday he turn 18 month old and only thing he say is no no no no and some times Mama. I call the Bergen early intervention and they took Ammar information and team will come to evaluate Ammar. I hate to go through these therapies stuff again. I am so praying, there is nothing wrong with him. Some say, boys talk late. I hope that is the case.
Thursday, April 21, 2005 11:20 PM CDT
Last week been really busy. I had so many appointment for the girls throughout the week. Sunday was Khansa's birthday which we celebrate at school on Monday and had a good time there. Then later we had a little party for Khansa at home and cut the cake with family. By Monday night I was burning up with fever and so is Khansa and Zahra. Abeerah going again for not sleeping and being way too much hyper behavior. All kids stay home on Tuesday.
WEDNESDAY. Woke up and start making the girls ready. Abeerah did not had any sleep all night long. And she was way too much to handle when I was dressing her to make her ready. Khansa looks better when she woke up so I made her ready for school too. But when i was feeding her breakfast she start sneezing one after other. When I put her on the bus she start coughing. I bring her out the bus and told the bus driver that I will keep her home and send only Abeerah to school. Zahra had a dentist appointment at 9.30am and my plan was to take her to DR and then drop her to school. I call the bus and told her that I will drop zahra off to school but when I woke her up, she do not look good and she start coughing so I let her go back to sleep and call the DR Jackson's office and cancel the appointment. Make Bilal ready and send him to school. He was really happy because today was his voting day. They had to decide between having a silly dress up day or costume day. I clean up little and make Khansa lay down on sofa and put TV on for her. Give her medication. She was very calm and do not want to move. I did not had much rest all night last night and I still feel fever and my whole body was in pain. I call my mother in law, if she can buy Tylenol for me. I went back to sleep till Zahra was sleeping. Woke up with Zahra's crying and start take care of her. Then Ammar woke up too. He was happy this morning. I feed all of them breakfast. Clean the back porch and we all just sat there till bilal's bus came. Bilal took Ammar in the yard and play around. Then Abeerah came home. I went to get her from the bus and bud driver was bursting at me that they can not take Abeerah, She is very hyper and scream all the way home, She was out of control and it is hard for her to drive and other kids get upset. Just tear come in my eyes when was bringing her inside. She start jumping as soon as I put her down on her room. Give her some drink. Bushra came and she play with Bilal, Zahra and Ammar out side. I feed Abeerah and Khansa. Change clothes. Put Barney for them. After Bushar left. We all came inside. Zarrar came home and he was very tired. I cook dinner and feed every one and make them ready to bed. Abeerah looks tired and I hope she will sleep tonight. After giving them medication, put Abeerah and Khansa to bed. Zahra all of sudden start crying and start rubbing her back on the carpet. When I look on her back it was all red and bump was all over. I got really scared that it was not a poison IV because she was out playing today. I gave her bath with Itchy skin soap and put medication on all over her body and put light clothes on her. She went to lay down and watch TV. It was hot so I gave Ammar bath too because he was bit cranky too. Then Bilal jump in shower. Put all three to bed and open windows, just then it start raining and weather got better. Check on Abeerah and she was sleeping. Thank God. She had two rough days. Every one was sleeping but I had hard time sleeping. Things around me is not going too well. All I can do is just cry to let all out. I feel sad for my girls and my husband who have to work so hard and he is not feeling too good.
THURSDAY. I hardly went to sleep when alarm went on at 3.30am for Zarrar. He woke and start getting ready for work. I mad his clothes ready and jump back on the bed but he wants some stamps and some other things so I had to get up and give him what he needs say bye to him and went back to bed. Woke up back at 6.00am. Ran out to put garbage out side and put stickers on them. Woke girls up for school. It was windy and cold. So look for warm clothes again. Make Abeerah and Khansa ready and feed them breakfast. After both left, Make Zahra ready. Make her lunch and feed her breakfast. After she left, Woke Bilal up and send him to school. Ammar was up and start crying. I mad his bottle and put him back to bed and don't know when I fell sleep with him. Woke up with Zarrar's call. He wants me to go to the bank so i get ready and make Ammar ready. went to bank, way back stop at my mother in laws house and she was not home so I came back receive Bilal from the bus and went to rag shop to find costume for him. They had costume day at school. But did not find it there any thing. Came home on time for Abeerah and khansa's bus. Bus driver was mad again on Abeerah's behavior. My poor Abeerah. Khansa walk around the yard but I bring Abeerah inside and she sat down quite. Zahra came home and she was sleepy. She stay sitting on the sofa for while. I clean the house. Clean the kitchen. Bring Khansa inside and feed both of them. Cook dinner. Teach Bilal some Math, some reading. Zarrar came home form work at 8.00pm and He looks very tired. I make some calls for party city for costume for Bilal tomorrow is his costume day. He wants to be a Ninja turtle but I did not find his size. So I call my sister in law because she offer me to use Bilal;s cousins costume of spider man. She said its OK. after feeding the girls and putting them to bed. Zahra start crying like every day. So I put shoes on her too. Ammar was sleeping. Zarrar say he will try to stay up till I am back. Me Bilal and Zahra went to my mother in law's house and pick up the costume and zahra and Bilal play for 15 minutes. Came back home and Zarrar went to bed. I put Bilal and Zahra to bed and Ammar woke up and wants to be play with. He is very cute but do not talk yet. I praying so hard that he can talk. My heart beet turn so fast when i think about what if? May Allah have mercy on us.
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saturday, April 10, 2005 1:26 AM CDT
THURSDAY Abeerah and Khansa stay home because both were not happy all day. Abeerah cry really out loud and she was out of control. And when Abeerah cry, Khansa also start crying so it was a really hard day taking care of them with all the other stuff. It was really a struggle changing Abeerah's diaper. I keep giving Tylenol to Abeerah so it can help her in the pain. And can't wait till morning for her dental appointment. Zarrar still not feeling too good and complain chest pains time to time. He start pain as soon as he eat any thing so he thinks that is his stomach that causing him pains and short of breath. Zahra is doing good at day time. She is back some way and saying some words again. But at night she is so different and cry, scream and drive every one nuts. Every one went to bed but Abeerah was not happy at all. I try to clam her down every way I know but She keep crying and tears was falling from her eyes which really kills me seeing that. I wish I can take all of her pain from her. I hate when they are in pain and cannot tell what is bothering them.
FRIDAY. Abeerah did not sleep till 4:00 last night. I wake up and call Abeerah and khansa's bus to tell they will not go in the bus but bus have to pick them up. After i try to wake Zahra up but she was really in deep deep sleep so I lay down with her to have another try in five minutes but I fell sleep and woke up when bus was out side so she was stay home today. Woke Bilal up and send him to school. After i wake Khansa and give her bath (she cry the whole time) and make her ready. Make Abeerah ready and make my self ready feed breakfast and pack luch. Both looks good and was not crying. I put both of them in the van and by them my mother in law came to watch Zahra and Ammar. Reach to DR Jackson and Abeerah teeth got cleaned and DR said there in nothing wrong with her teeth just molders coming out. Khansa's front tooth got pulled out. Because new one growing behind them. By 10:30 we were done there, Dr Jackson came out to help me put the girls in the van. I cannot thank him enough for taking care my kids teeth. I drove to the school but in the middle of the highway my gas finish and long story reach to an exit and find gas station and fill the gas and drove to school. In the way home did some fruit shopping, My refrigerator was really empty and I did not still done my groceries shopping. Came home, Make Ammar and zahra ready and went food shopping because week end is here and i have nothing in the house, so i did shop with two kids....they touch every thing and want to eat every thing. I open chips, cracker and some candies and lot more till i reach to pay. My mother in law was picking Bilal from his bus. so i took my time and reach home to unload every thing. Drove to find my new bank and did some paper work and drove home. Girls came home and I got busy with taking care of them. Bilal came with his grand mother to study but Bushara did not came so my mother in law took bilal to spend the night with her. Make food and feed kids. Abeerah was so much crying and slipping from my hands. I got some scratches on my face. when i put her to bed she was so screaming. Zarrar had some meeting so he was coming late. I gave Abeerah medication for pain. Abeerah really cry most of the night. I cannot take poor girl's crying, I thought it was teeth bothering her but now it is not teeth so I have to run around to find what is bothering her. After Abeerah went to sleep very late and I also went to bed.
Need your prayer.
Thursday, April 7, 2005 11:12 PM CDT
TUESDAY Woke up and start making the girls ready for school. I was really exited that Zarrar is coming back home today. Like some of you know that our very close Aunt passed away and my in laws whole family went to Indiana for her funeral and Zarrar went with them also. I am so sad that I could not go. I really loved her a lot. After Abeerah, Khansa, Bilal and Zahra left for school. Ammar woke up early and I took care of him. After we both had our breakfast, I clean the whole house. I had to do some things taken care and have some stuff done at the bank so make Ammar ready and get ready to get thing done. But I got lost looking for new bank and drove around for while. I did not know where I was. Then i ask an officer in fire dept. And he gave me some direction to go to the bank. I still could not find it, I am so bad with directions. I came back home because I had to cook lunch for my in laws family. So start cooking. I made couple of dishes fast because not having much time. I had an appointment at Bilal school parent teacher meeting. So I call my husband and he said they will be here by 2:00 PM And I had the meeting at 1:45 PM. I set the table for them and left to school. Ammar love the kids in the class and we gave some treat to Bilal class fellows. I talk to the teacher some stuff and find out he is really doing good. By 2:30 PM class over and I took Bilal and came home. Meet every one. They already had eaten. Zarrar left with his brother to pick up their car. My mother in law told me that Zarrar did not feel good all the way home of 12 hour drive. He is complaining heart pains. I got so worried about him. He came back and not look too well. After every one left, he went to lay down and keep telling me his heart not feeling too good and having pains in his left arm. I want him to go to the DR but he said, he will be ok. Girls came home So i got busy taking care of them. Abeerah was crying with tears. I try to comfort her. Checking on Zarrar and he was sleeping. Bushra came to play with Bilal. She is such a nice girl who wants to do some voluntary work for hour and half. She teach Bilal some of writing stuff. Then I took every one out side Khans walk around and Bilal, Zahra and Ammar play around. After Bushara left, I took every one inside. After feeding every one dinner. I put Abeerah and Khansa to bed. Zarrar start feeling more pains so I called the DR and ask him about is stress test results. He told me they were normal. It could be gas or some gestural pain. Then Zarrar told me he having hard time to breath. Oh boy!! It is toomuch to take. I took Bilal, Zahra and Ammar and put them in the van so I can pick up medication for him from my mother in laws house but when I reach there, I find out my mother in law left to my house. Pick up bread way home and came home. Zahra start crying out loud. I took every one upstairs and put them to bed. Zahra keep crying. Every night she go through this crying mood. I could not hold her any more then Zarrar came up and lay down with Zahra and she got quite and fell an asleep. Zarrar did not do too good and keep staying uncomfortable most of the night.
WEDNESDAY. Woke up 4:00 AM and Zarrarwas not feeling good so he was staying home and he stay in bed. I turn all the alarm clocks off. i was really tired due to not much sleep at night so i went back to sleep till 6:00 but woke up little late for my scadual to making girls ready for bus. Woke them up and make them ready in hurry. Khansa do not like to be awaken so she start crying. Bus came early on top and i could not send lunch with them. Then I wake zahra and make her ready and send her to school with her lunch. Then Bilal left to school. Zarrar wants me keep pressing his arm. My mother in law and sister in laws came over to check on him. After taking his medications he felt little better. I took care Ammar. He become too much boy and all day running here and there on his feet and I have to run after him. That make me tired quickly. I made special lunch for Zarrar, No MORE MEAT FOR HIM. Bilal came early to day due to half a day. After girls came back home. Bus driver told me Abeerah and Khansa both cry all the way home. I took them in yard to play around and walk arround. After little bit of playing I bring them all inside due to I was tired. Feed them. Put movie on them rest of the day did not do much. Lots of phone calls attend from relatives. Ammar went in the bathroom and put shampoo in his eyes, take care of him and rock him for bit to make him quite. After putting kids to sleep. I clean the kitchen and went to lay down. But do not feel sleeping so much in my head. I am praying for my husband to get all better.
Need your prayers.
Tuesday, March 29, 2005 1:46 AM CST
SUNDAY Start my day at 8:00 AM when Bilal woke me up and told me he will be with his father. Khansa and Abeerah was also up. After washing their face, brush their teeth, change their diaper and clothes, I carry them down stairs. After giving them their milk glasses and put movie on for them, I look for Zarrar and Bilal. I did not see them inside. My husband is an early getting up person but i stay up all night long so he do not like to bother me and start his day by doing something. I look out side and both were out side cleaning the yard. I made breakfast, Bilal's favorite pancakes. Then call the guys inside. They putting the fire on. It was cold out side. After both done with breakfast, I feed Abeerah and Khansa. Zahra woke up and I feed her breakfast. Did some cleaning around the house. Help Zarrar some in cleaning the yard. Ammar woke up and I take care of him. Bilal, Ammar and Zahra play out side for while. feed girls lunch. Make dinner while kids watch TV. Zarrar clean the whole yard and organize his garden tools. Kammal (friend) came over. We all had dinner. I feed Abeerah, Khansa and Zahra. Kamal help Zarrar in cleaning the basement. Our basement got flooded and every thing got destroyed. I help them time to time in throwing things or clean up and keep things. Lots of stuff got messed up. I carry Abeerah and Khansa upstairs and make them ready to bed, and put them to bed. Zarrar's other friend came over with his wife saliha and sat little bit. Zahra decided to cry and cry most of the time they were here. After they left, I put zahra and Bilal to sleep but Ammar did not sleep till 4.00: AM and keep crying so I have to hold him and play with him.
MONDAY. woke up when Zarrar was getting ready to work but too tired so went back to sleep. Get up at 6.00Am and wake Abeerah and Khansa up. Make them ready for school start with Brushing teeth, diaper change, dresses change, putting shoes on them, feed them breakfast, pack lunch for school and putting jackets on each one of them then carry them to bus. After both left then wake Zahra up, make her ready and send her to school and then woke Bilal up, make him ready and send him to school. After I clean a little around the house. I was so tired and my wrist and arm was hurting so much so I went to sleep with Ammar. We both woke and ply little. I had a bad head ache so do not want to do much. Bilal came from school and he was not happy. He was tired so he went to sleep. It was raining. Zahra and then Abeerah and Khansa came home. Bus driver told me Khansa was not feeling too good. After settle them. I watch TV with them. Ammar and zahra make lot of mess all over with cookies. Clean up and make dinner. Feed every one. Bilal woke up and play around. Took girls upstairs and make them ready to bed and put them to bed. Zarrar came really late due to traffic because of the bad weather. He had dinner and he was too tired so went to bed. I clean the kitchen. Bilal stay up till 1.00 AM and Ammar become a night baby so he stay up till late.
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Friday, March 25, 2005 1:31 AM CST
WEDNESDAY.
Abeerah did not slept last night and went to sleep early in the morning just before I was going to make her ready for school. Woke Khansa up but she have a really bad runny nose so I call the bus that both of them are not going to school today. Then I wake zahra up and make her ready for school. After she left, I woke Bilal up but he start crying for not want to go to school. He was crying so bad that I have to say OK. Since he cut little hair of some girl in school, he is not to happy about going to school. Because he think kids don't like him any more. Bus came on the door and I ran out to tell that Bilal is not going. All were in bed so I went back to bed because I know it is going to be a busy day today. But in like 25 minutes later Bilal was crying again because he want to go to school. But I cannot drop him off because I have girls home and there is no way I am going to pack all of them in the van and drove to his school. We both watch TV and then Ammar woke up so Bilal play with him and later we all came down stairs and make breakfast and feed every one. Abeerah slept till afternoon. I clean the house and then went in the basement to clean up. We have flood in the basement and every thing got wet. Its been two days I am bringing stuff upstairs and drying them up. All our storage stuff, fans and air conditions, all my sewing stuff, all my filing cabinets, all Zarrar computer stuff and his power tools, all got wet. My arm feel really tired bringing stuff upstairs. In between changing diapers too. After Zahra came home from school, weather got really bad. I had an appointment for girls so i call and make it for next day. Feed every one. Clean around. I was cleaning girls bedroom when Bilal call me to tell me that Zahra took her diaper off and make mess on the sofa so I ran there and oh boy. I clean and wash Zahra put new clothes on her. Then I made Dinner. Weather got really bad and I was worried for Zarrar coming home in bad weather. He came home late due to traffic. We all had dinner and clean up then make girls ready for bed and put every one to bed. Ammar stay awake with me and play around. I watch some TV and went to bed but could not sleep. Miss my mother so much today. I am not feeling to good lately. I wish I can call her to make all my worries go away. If any one know the number for Haven let me know.....
THURSDAY.
Woke up early after having just an hour sleep and Zarrar was up already and getting ready to work. After he left, I went back to sleep. Woke up at 6.00 : am and wake girls up for school. It was lot of snow out and every thing was covered in snow. It looks beautiful but at this point do not want to see any more of snow. I check with schools if there is any delays but there wasn't. Khansa was more like in crying mode this morning and Abeerah was really laughing out loud. Both was difficult to make ready. After Abeerah and Khansa left to school, i put all the garbage out side and put stickers on for pick up. Then Zahra and then Bilal went to school. I sat down to rest for couple of minutes after running around making every one ready. Husna stop by for minute to drop some papers off. I had an appointment with social worker but I call to cancel due to the weather. After I clean the house and rest for couple of hours. Ammar woke up and I feed him and take care of him. Kids came home one after other. Khansa had a bad runny nose going on. Zahra was in really good mood. After taking care all of them, I had to make some calls so I put Barney for girls and put cartoons for Bilal. After i was done, i call baby sitter to come and watch Abeerah and Bilal. Make Ammar, Zahra and Khansa ready for Dr. I get ready and when I was leaving out the door and I smell bad so came back and change zahra and Khansa diapers and I was late so drove fast. Reach on time. Put Khansa in her wheel chair, pushing her and holding zahra's hand and carrying Ammar was not easy from the parking lot to the office. Zahra was happy in the waiting room and really jump a lot like a bunny. Ammar did not want to come out of my arm. When our turn came, I was all ready tired stopping zahra from every thing from going out to turning the lights off while Ammar in my arms. DR Tantawi check them, Zahra had her 4yr old shots. Oh boy!!!it was not easy for the Dr and her assistant. She also need to get her blood work done that we have to go to a lab and Ammar had some congestion and Khansa got antibiotics. All three got lollipops way back home. My arm was tired holding Ammar. Hardly make to my van holding him and pushing wheel chair with zahra. Drove home and Send baby sitter home. Went to the kitchen and make sandwiches for every one. Ammar went to sleep. Zarrar came home from work. After dinner he went to sleep. I make the kids ready for bed (diaper changing, carry them upstairs, Brushing teeth, changing and putting them to bed). Ammar woke up and decided to play around so I work some on computer then went to bed. Tomorrow is GOOD FRIDAY and kid sare off from school. It is going to be a busy long weekend.
Need your support and prayers for our strength.
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Tuesday, March 15, 2005 11:25 PM CST
This last week and this weekend was really busy. Girls was not feeling good and stayed home all week long. They feel better over the weekend. Khansa cry a lot whole Saturday and Sunday and time to time Zahra join khansa with her crying. Some times both start togather. I could not find any thing bothering them.
MONDAY.
Zahra cry most of the night and did not let me sleep. She just grab on to me feeling like I might run away from her. I watch Barney with her so she don't cry to wake every one up but as soon my eyes close she start crying again so i saty up even I was really tired. After Zarrar went to work 4: AM. And Zahra also fell a sleep. I also want to have couple of hour sleep. Wake back up at 6.20: am but I was late for making the girls ready for school. But i thought i can do it fast but before I start, Zarrar call me. He took my cell instead of his so he need some phone numbers from his cell. SO i know I cannot send girls in the bus today. I spend some time digging numbers for him and after that i call the bus and told them that I will drop the girls. Then wake Zahra and make her ready for school, make her lunch and feed her breakfast. After she left, wake Bilal up and send him to school. Then feed the cats and send them out the door. Give Abeerah and Khansa bath and make them ready for school. Feed them breakfast. Wake Ammar up make him ready and get ready my self. When I went load the kids in the van but van was full of stuff. Taking things out and putting in the house took some time. First carry Abeerah to the van and belt her then Khansa and then Ammar. Put all 3 wheel chairs that I borrowed from school for our over seas trip. Drove to the school which is on hour drive. After girls went to their classes, I went to see the wheel chairs and feeding chairs that I order for Abeerah and Khansa. Both of their physical therapist Nancy and Kaolin teach me how to use them and sit the girls in it to see they fit right. Khansa's feeding chair was small so I ask for new one. Someone help me put every thing in the van. Feeding chair was really heavy and big. On my way back home I did some meat shoping. Came home and start cleaning up. Bilal came from school and I gave him food to eat. Then girls buses came one after other. Abeerah and Khansa, i have to carry them inside due to the snow and ice and after sitting an hour and half in the bus they have hard time walking right away. After taking care of their needs I put Barney for them. Khansa look good and happy. Construction guys stop by to pick up something so they help me bring the feeding chair inside. I love that chair. It is very comfortable and have so many options in caring a special needs. It is good for Abeera's back. She keep lying down during feeding time but chair will give her a support. Zahra took her complete clothes with diaper off three time within two hours. It is getting really upsetting. I got to make her overalls outfits with zipper in the back but my sewing machine is not working. And taking clothes off one thing this diaper taking off create a whole lot of mess and some times diaper goes in to Abeerah's hand and that gets really yuky. I cook dinner. Zarrar came home early and he was not feeling good. He lydown on the sofa and fel a sleep. After feeding every one, Make Abeerah and khansa ready to bed. Clean up in the kitchen. Read books for bilal and put him to bed. went to lie down with Ammar and Zahra because she start crying.
TUESDAY.
Zarrar was up couple of times at night and keep telling me he is not feeling good. He had pain in his heart. I am so worried about him. In the morning he calls in for not coming and stay in bed. I woke Abeerah and khansa for school and make them ready for school, Feed breakfast and pack lunch with them and put them in the bus. After both left then make zahra ready and after she left then Make Bilal ready and send him to school. Ammar woke up and I take care of him. Zarrar call Dr. office to make appointment with him. Make breakfast. Zarrar stay in bed. Kids came back from school. Zarrar get ready to go to see the Dr. HE help me get Abeerah, Khansa and Zahra from buses and then went to see Dr. Farooqi. Mean time I took care the girls feed them change them and clean and cook dinner But really worried about him. I wish I could go with him. Zarrar came back from Doctor. he have to go for stress test and dr. gave him some medications. I thought the same thing. He been in too much stress. He is working so many hours and not enough sleep. He still did not feel to good so he went to sleep. After feeding girls, I make them ready to bed. Abeerah doing really good lately. She is eating good And walking whole a lot. She is sleeping good at night since we are back. Khansa is not much happy and getting up middle of the night. Zahra been crying a lot. She looks changing so much and cry a lot. She just want to hold on to me. Put every one to bed. Ammar decided not to sleep and play around so I went to bed late till he went to sleep. Please keep my husband (Zarrar) in your prayers for his good health.
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Saturday, March 5, 2005 5:39 PM CST
Hi Every one. I am so sorry for not updating for a while. I received some mails for update. Its been really busy here for me and on top my internet was not working for days witch i find out later that cats nocked out the cable but here I am.
We all landed in United State on 25th of Feb. Eighteen hour plane ride with 5 children, In between 3 MPS girls and an infant are really not an easy ones. On top Air hostess told me that I can not change diapers on the seats, I have to do it in the bath room which was so small that you hardly can stand there. It was not a pleasant time changing diapers. But thank God I have my sister and brother with me, except the diaper changing part they were great help for me and we all made it OK here. Girls look happy to be home. After girls have first day back to school, They all got sick and staying home since. This flu is going around in my house. All five of them been sick. And me taking care of them and getting back to routine is just keeping me really busy.
Woke up 3.30am and wake zarrar up for work. His new place start earlier so he have to leave hour earlier. After he left to work, I check on the girls and boys and I went back to sleep. Woke up 6.00 am and went to check the girls if they feeling better this morning to go to school. They do not look too good and both was in deep sleep so I left them sleeping. Put garbage out. We have so much garbage together due to not having the stickers. We have to put a one dollar sticker on each garbage bag we put out side. It was lot of bags to put out. After that give a call to Abeerah and khansa's bus to let them know they are not going. Then wake Zahra up and make her ready for school. Make her lunch and feed her breakfast. After she left in her bus wake Bilal up, Give him bath and make him ready for school. After he left to school. I clean the house. Guys came to put some molding that left in the kitchen. By 10.00am Abeerah and Khansa was up and I take care of them, Change diapers and clothes and bring them down stairs. Feed them breakfast. Give their medications and put Barney on for them. Ammar woke up and I take care of him. Zahra school nurse call that Zahra bit some employee and I have to get her blood work done on her if she have any virus. I do not know why she did that because After workers left, I clean the kitchen. Then Bilal came home from school. Give him food to eat and then Zahra arrive from school to make me real busy. She start from dropping the whole cereal box on the floor. By the time i clean that she already make a mess in the living room by taking her diaper off. A real poop mess. After I done clean that up. I make macaroni feed every one and give them juice to drink. Khansa was crying a lot. She is really frighten by any lour noises. I sat with her for little bit to calm her down. Zahra took her diaper off again...... and all her clothes off. She start doing this a lot. I don't know why. She also have exema. That was much better in PK but it start to coming back all over on her skin it could be bothering her so she want to reach all over to scratch. But it is bad for me because I have to end up cleaning up diaper mess. Zarrar came home from work and I was late for making dinner. And he was really hungry. Gave him the left over Marconi to eat and cook fast dinner. Zarrar left for some work. I feed the kids and make them ready to bed. After putting girls to bed. I clean up the kitchen. Zarrar put Bilal to sleep and I put Ammar to sleep. But Ammar did not sleep till 12:00 PM. Then I went to bed.
Tuesday, February 15, 2005 6:50 PM CST
woke up with zahra's cring. She was not happy and keep sitting down. I felt she having pain in her stomach. Later she have bad diereah. Rest of the day i change many diapers. I went to the Dr and get medication for her. Giving her medication is an other story. she do not like to take any medication. Three people hold to give her medication. I hope she feels better tomorrow. She eats any thing and every thing and so hard to stop her from eating. Khansa was happy but did not make a sound out of her mouth. She turn really quite and lossing weight. I am really woried about her. I could not find any energy drinks for her here. I will use boost as soon as i will find them. I hope they will help her gain weight when i get back home. Abeerah was active all day and her sleeping disorder still same here. Our whole family still did not change our timing so we all up all night long and every one arround us sleep and we all go to sleep when every one else is leaving for school or work. I do not want to change it now so i will stay ok when i get back home. Can not weight to be back. Need your prayers.
Saturday, February 12, 2005 9:57 AM CST
Finaly i got time to update. I know so many of you do want to know how girls are doing. We reach here safe but after a long journey. Girls are doing ok here. They have some up and downs befor but now they are adjusting to the envirment here. My whole family gone through big shock but now evry one getting back to their lives. I have so much help here for my daughters but no one want to help me in diaper changing. Zahra cry a lot most of the day. She stay with me all the time. Khansa is lossing weight fast and i do not understand why. she eat good and eat every thing. Abeerah sit most of the day. Bilal fall down and hurt his nose. Ammar doing great. I will update in details soon. Need prayer like always.
SUNDAY 2-12-05
We all are doing alright here. Now very little days left of my return back to U.S. I don't know how these days past. Still feel i just arrive. All brother and sisters are getting ready to return back to thier homes. Zahra suffering from diereah. Khansa is still the same and lossing weight. Abeerah slow down so much. Bilal is really happy here and play with his cousins.
Our kitchen is building up.Zarrar is workiong himself when ever he get time. It is been over month since i am out of kitchen. Kitchen situation is having some imrovment. Want to thank you Askia, Umer, Rabi and wasay for helping Zarrar out in some kitchen stuff.
Weekend feel really long. One girls been really bored staying home last whole week due to winter break and my mother illness and then her passing away so they been really not happy and other I could not wait for Monday to find ticket for my self to fly back home. Its been really hard time for me. Half the time I am with my brother and sisters and half the time I am here. Zarrar spend some time on line to find me something available and he did booked our seats but from Chicago and they all were in different classes. Zahra was hard to handle all weekend. Cannot wait till all kids go back to school.
MONDAY. Abeerah, Khansa, Zahra and Bilal left for school after long winter break. I get on the phone to call travel agents to find me all seats is same class and need the tickets. By evening I got confirm seats from BESTBUY TRAVEL from CHICAGO. First from Newark to Chicago, then take an international flight from Chicago to Pakistan. I was happy. I went shopping for couple of thing to get for kids. Came back Receive kids from buses one by one. Feed them. Start packing up. Zahra start crying. Every night she cry from 8pm till she go to sleep. Girls watch TV. After feeding them dinner I put them to bed. Did some cleaning and washing clothes. And went to bed.
TUESDAY. After kids left to school. I got so tired and my back hurts so I went back to sleep for two hours. Wake up and feed Ammar. Make him ready. I need an extra suit case so i went to buy it. There my uncle call to tell me I have to go home and call my travel agent to set up some stuff. I came home, After an hour on the phone with travel agent. Finally every thing was set. She was mailing us tickets by FEDEX and we will receive them by 7.00am. ZZarrar also booked a ticket till Chicago and back to New Jersey. Zarrar call and told me he got a day off. Bilal came home. I saw Ammar have a missing one shoe. That was the only pair he had so i drove fast to payless and buy a pair of shoes for him. Reach home fast and right then buses start coming. Receive the girls. Feed them. Diaper change. And put movie for them so they stay relax and I can do some packing. There was so much to do. I was running around. so much laundry to do. Dry it and fold it to putty in suit cases. It is very cold there in Pakistan and no heating system so need warm clothes for girls. Shanaz and her Mother came over, they heard about my MOM. after they left, Zahra start crying and it was so difficult to do any thing. Zarrar came home and bring me laptop so I can work on computer while I am there. I have some movies of my parents that none my brother and sister see it yet, this way I can play it for them. I LOVED IT. I hope girls hand don't get on it. Some stuff was left to get so I call Husna and sweet Husna bring it for me in hurry. Thank you so much. After kids went to sleep. I wash zarrar clothes. He is not good at keeping his clothes well. I wash, fold and iron all of his clothes. So he have no difficult time finding clothes for two weeks at least. I did some bills and some other needed stuff. And it was morning.
WEDNESDAY. My day never finish last night because I stay up all night packing up. I was really nervous. So much to deal with. First thing we have to deal was wait for our tickets that FED Ex to us and told will be here by 7.00 am. Zarrar sit by the door. By 8.00 he call to fed ex to track the package and find out they will be here in half an hour. We have no idea witch plane we are flying and when till we get the tickets. I start waking the kids up and give them bath one by one. By 9.00am zarrar call FEDEX again and they said they try to make delivery and no one home. OH boy now we are made because Zarrar been sitting by the open door all morning so he don't miss them so he call and almost yell at them and within 20 minutes package were here. Our flight was 12.40pm and we have to be there by 11.40 and way to the airport was about 4o minutes so we have to be out the door 11.oo am. I have to move fast. I was so running fast. My mother in law came and help me feed the girls and make their bottles and sip cups filled for the plane. I put the luggage ready and zarrar put them in the van and their strollers. I put jackets on the kids and pack them in the van and drove to the air port. We reach on time. Take very thing out the van (luggage and kids). went to they counter and the guy told me that minute ago our plane got canceled due to the weather in Chicago. we try to get next one which one will be 2:45 PM and reach there by 4.oopm and we still can tack out connecting flight which is scadual for 6:15 PM. We wait and hour later find our 2.45pm one also got canceled. Now i start freaking out. My sister and my uncle have to meet us in Chicago. I start crying because my sister will go and i will never be able to go. We call them on their cell and find their plane is also delayed. There is no way we could reach there on time to take our flight so we call our travel agent and cancel every thing. I was such a hard time to take it all. I work hard two days packing up. We been on the air port for three hours. Girls were good but I have to keep feeding them something snack so they stay quite. Now every thing canceled and we have to go home. I cry all the way home. I want to see my little brothers and sisters. And i want to be with my family at this time. I feel bad for my sister who is staying here just for me. We pick up coffee and donut our way home because i have not eaten any thing since morning. By 4.30pm we reached home. I changed every ones diapers. Feed them. Zarrar left with Bilal to my mother in law to tell her. I call my sister (Saadia) and she was also reached home very upset. I call my family in pakistan and told them we are not coming so they don't wait. My brother start crying. They all wants us to come. Only thing I can do now is just pray to find some seats soon. Feed every one dinner with left overs. Zahra start crying like every day of her night scadual. Zarrar work on my lap top to download stuff for me. I have not good feeling for any thing. Every little thing just make me cry. Put girls to sleep. Bilal spend night at his grandma house. It start snowing and very cold out side. Put Zahra to sleep and Ammar was last one left. He slept a lot today and he was really active. It took a long time to put him to sleep and then I went to bed. Check our Airport adventure
THURSDAY Woke up early but do not want to be up so stay in bed. I just want to cry. Do not want to do any thing. But on Abeerah’s voice I have to get up and take care of her. After changing her diaper and washing her face. I bring her down stairs. Then zahra and Khansa woke up too and I take care of both of them..Could not brush any ones teeth today because every one brushes were still in the suit case and every thing is in the van still. After all taking care of, I call the travel agent but no luck. She said she will let me know before tonight. It seems like whole world is traveling where I have to go. Just so upsetting that I cannot find seats any where. Whole day I feel like crying. Do not want to do any thing. I just sat and watch TV and take care the kids. I was so bored so I call Bilal to come home but he seems happy at his grandmother house so I did not bother. After feed girls their lunch I work on my computer. Then did some cleaning because zahra gave Abeerah and Khansa cheese doodle bag and they make so much mess every where. Half eating doodle was all over the living room and yellow cheese marks on walls and sofas. So it took little time to clean up and I was so not happy today. By evening after several calls did not find any luck. Call my sister and she was also very frustrated and seems in same condition just like me. We want to be with the family. Just sitting home is not helping at all. I miss my Mother so much. I found her letter and just cry reading how much she miss me and want to see me. Every letter she just want me to come. Girls watch Barney and Elmo most of the day. Abeerah was on her good behavior but Khansa cry time to time. Zarrar came home from work and bring Bilal with him by stooping at his Moms house. Also bring Mac and cheese that my mother in law make for kids. I feed every one. Zarrar took Bilal to his karate class. I put girls to bed. Zahra did not go to sleep but cry as usual. Bilal and Zarrar came back home and after little cleaning we all went to bed.
FRIDAY. I want to send the kids back to school today but my alarm did not go on and I woke up late. It was late to tell the buses to come back and start picking the kids up for school till I get some confirm seats to travel. I let the kids to sleep. Every one stay in bed till 9:30 am. Bilal, Ammar and Zahra sleep on their beds in my room but I don't know how every night, middle of the night they end up on my bed. I watch Blues clues with them in bed. Khansa awoke up and came in our room and climbed on our bed and start jumping so every one have to leave the bed. I take care each one and took them downstairs. Little bit later Abeerah woke up too so I bring her downstairs also. After breakfast kids play around and I call the travel agent again. Find out there is seat for Saturday night from Chicago. I call Zarrar but he said he is working on Saturday and cannot take off. So I call back to the agency and confirm for 12th of January from Chicago. At least there is set date to look for little far but I hope thing stay well and I can travel. My mother in law came with some juice, bread and milk. She is helping us a lot. May Allah give her health. Abeerah did not stand all day. She crawl and get every where but did not stand. I try but she do not make her leg straight. My heart just hurt to see her. Khansa was very active and keep climbing every where. I put her down so many times from our glass coffee table(i do not know how that table still servived in our house till now). But she climb back up. Zahra just want to watch Barney and keep pushing me toward TV as soon as her tape finish. Rest of the day just be with the kids, feeding them, diaper changing, cleaning their mess and not much of any thing else but feel like ready to cry. Miss my mother a lot. I know i will not feel better till i see her grave. After kids go to sleep i pray for my Mother and my Father and went to bed late.
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Very hard time for me. I was not able to fly on 29th because my condition was not good, I could not able to pack up and taking care 5 children was really hard in the plain when I am broken up. My sister is a mess who stay here just for me to help me out. Whole family is really heart broken. I have little brothers and sisters and they are crying a lot. My youngest sister is 12 yr. and she is really hurt. We lost our parents within two years. They both were young. My father was 62 when he die and my Mom died 54. I call every other hour to my family to give some comfort to them from here and i can not do much. There after noon which is early morning here they buried her right next to my Father. I wish I could see her one last time but my luck just not with me. I try to get a seats for 30th so I can have some grip before I leave so I can take care my brothers and sisters. But there is nothing available. I call every travel agency but no luck. My sister had a seat from Indiana but she did not go because she knows if she left then I have no chance of going there because of not having any help. She waited so much for me already and she said she is not leaving without me. Thank you Sis. I guess God made sisters for taking care of each other. Right now every thing closed till monday but I am praying something come up on Monday. I know till I don't go and see her grave, I am not going to be able to get hold to my self. I am not able to eat last couple of days because my stomach is really upset when I am worried. People were coming over all day. Zarrar was really helping. He also working hard on the kitchen part. It is getting to long for not having the kitchen. He did all the insulation part. Also hooked up the sink. Thank God, I been running up and down to the basement for any water need. Zahra cry most of the day. Khansa been quite and I felt she is loosing weight fast. I am worried about her. She eats well but looks getting thinner. Abeerah Having sleeping problem and she is not standing much. I need all of your prayers for my strength to able to take care of my children.
WEDNESDAY. Dec 28th. Woke up. And start my day taking care the girls. About 9.00am my passport arrived. I was so happy that i can go now. Fill visa applications and left to get the visas. Lilly came and she watch the kids. Just when I was about to leave, My sister call and told me all mother Organs stop working and she is only breathing. I had a really hardest journey to NY. My heart beating so fast and Every second just praying for my Mom. I pray so she can make it to more days and I can see her. Put urgent visa applications in. and return home. I drop Zarrar home and went to gather some things (diapers, medications, wipes, some needed toys, Boxes and suite cASE to pack). Came home. Zarrar left to pick up passports. I call and booked the flight for 29th. Call my brother and he told me that mom condition is getting worst and her blood presser is dropping really fast. My heart just break. I just start praying so hard. All the kids was crying and they were hungry so I start feeding them. While I was feeding, My whole in laws family came over. I was just shaking inside why all are here. Then My mother in law told me the news I never want to hear. My Mother passed away.
(Inna lilla hai wa inna elayhe rajeoon). MAY ALLAH GIVR HER PEACE. Please pray for the departed soul.
Tayyaba.
TUESDAY. I spend half of my day calling and crying to get my passports so I can travel and see my MOM. Finally I got a good news by 4.00pm that they are mailing them to me over night. I start packing up. Keep calling for my mother and her condition was not well. Girls did well but Ammar was not happy. Zahra was up to something all day. Loree drop some gifts for the kids. My mind is just thinking all day of my little brothers and sisters.
SUNDAY.
Last three days been really hard. My Mother went back in Coma. It just really hurt. So difficult to do any thing. Last night i hardly have three hour sleep because there is lot of stress and Abeerah and khansa are sick. Abeerah did not sleep much last night. woke up and Abeerah was already up. While I take care of her, khansa woke up too. Give both of them bath, Bring them downstairs. Give them milk to drink in their sip cups. Make them comfortalbe in their play room. Then Zahra woke up and see wet tub and she jump in the tub. She loves Baths and any one in the house take a bath, Zahra have to have one too. She was all wet when I reach upstairs. After she done taking a bath, Then Gave Ammar bath. Bilal was at his grand mother house and he spend the night there yesterday. After kids eat their breakfast. I put Movie for them. Zarrar was working on the kitchen all morning and by after noon he turn the heat off to fix the heat in the kitchen. And on top same time it start snowing. I just said "It will be a cool cold day today in and out of my house." After feeding kids lunch, i help Zarrar in the kitchen. My mother in law and my sister in law came and Bilal came back home. we all talk and talk about taking the girls with me and other possible problems. But I do not have any other choice. I have no one to watch my kids. My sister booked her tickets with me and she will meet me here. That will be a great help. I have three wheel chairs to push and one baby stroller. Rest of the day I just help Zarrar to fix the heat, change diapers, and feed girls, Change clothes....... By night it was really cold in the house. I put warm clothes on them and put all the heaters that I find in the girls play area. My sister call and told me Mom condition is not any good, Break my heart. I am just being here but my mind is there all the time. Any bell ring give me a shiver. I am just praying for her. After I put girls to sleep. Me and Zarrar work hard on the kitchen part. By 2.00am we got heat back. Zarrar looks sick working in kitchen in cold. Still need a lot of work to be done on the kitchen part. After cleaning we went to bed. It is so nice to have a warm house.
Need your prayers for my mother.
WEDNESDAY.
Did not have any sleep since yesterday. Just praying all night long and call every hour to know what is going on with my mother. She moved little bit of her right arm and leg But did not open her eyes yet. My heart have a hard time accepting this. I want to see her and be with her. My whole family wants me to come and Zarrar think I should be there with every one. I am trying to make this happen but thinking of taking five kids in the plaine just give me a shiver. But in my head right now is not "how can I do it," I am just thinking "why I want to do it". First I have to make passports. Today after girls left to school. I took Bilal and Ammar to take a pictures. But the photographer girl do not know what she doing. She took passport pictures 4 times and all times it came out wrong and she wants me to pay for them. I was upset because I have to meet my husband in passport office but it took one hour and zarrar came home. So we meet home and drop Bilal at school. Went to bored of health and get Ammar's Birth certificate. My head was so much in pain and I had not eat any thing since yesterday. We went to passport office and they told us we have to have Tickets to expedite the passports. We search for the tickets. There is nothing Available till 3rd of January. My uncle talk to his friend and get us seats for 29th. I drop Zarrar and Ammar home so he can fill the forms and i went to get Bilal and Khansa from their school because according to new law, Kids have to be present at the time filling their passport. We were in our fastest speed to get this done today. By 2.30 pm we were in the passport office. There is no service to make our passport before 29th. I ask over and over. Even then it is a chance that my passport will arrive on 29th. I hope and praying that my MOM get better before I reach there. We came home. Receive Zahra then Abeerah from bus. House been a big mess. I could not do much but just cry. My mother in law came with food and I feed the kids. Clean a little. Khansa and Abeerah feel sick. Give them medication. Make calls to my brothers to know what is new progress in her part. She still the same and Drs. want her to go through brain surgery. We all sibling have to make decision. I did not want her to go through that because she never like to have surgery and it is very risky. By night I find out she is having some improvement. Zahra give me really hard time messing around the house throwing food every where so zarrar help me out taking care of her. After putting kids to sleep, I went to bed praying to have a good morning.
Please we need your strong prayers for my mother.
TUESDAY.
I am sorry for not updating in details becuse it is so difficult for me to write any thing. My mother (over seas ) is in the hospital. She fell down and hurt her head. Witch give her brain hambrige and left side stroke. There is only 1 percent c hance of her servival. I am just heart broken. Please pray for my mother. Any mricle can happen with prayers. I wish i can able to go and see her.
MONDAY. Dec 20th.
HAPPY BIRTHDAY TO ZAHRA.
We have a lot of fun today. Zahra school did her birthday party. It was very nice party and we have fun. Zahra was so happy all day long. Check Zahra's Birthday Out.
FRIDAY. Woke up 6.00. Feel much better today. After making all the kids ready. Carry them down, running up and down, feeding breakfast and making lunch ready. And putting them in the buses. All 4 went to school but in the end my back was so much in pain again that I could not sit or stand so went to liedown to keep my back straight. Call my husband to call me in hour in case I fall a sleep. He did call but I was out cold. I did have good rest. I have to take care so many things today but rest is important too. Woke Ammar up and we have our special time together. Zarrar hook up the stove for me last night so I can cook. So I cook some food before he have to turn the gas off again. Bilal came. He bring his school picture and he do look cute. I help him write some letters so he can send his pictures to his cousins and grandmother. Zahra came crying and Abeerah and khansa came home. Zarrar came right then and help me bring them in. Rest of the day was busy taking care of them, feeding Diaper changing, cleaning and doing daily things. No improvement on kitchen. Just waiting to the walls to dry off. Zahra spend time with her father watching TV with him. She look so cute when she is happy. Abeerah have good day. She did pee good today. Make the girls ready to bed and put all of them to bed. Read stories for Bilal till he falls a sleep. Clean living room so we have a clean room for tomorrow and went to bed.
Please don't forget to sign our guest book. It means a lot to us.
Last couple of day been really hard due to kids been not feeling too good, Our Kitchen Disaster and my back had lot of pains working hard and it reach to my neck. I could not move my neck.
THURSDAY
Woke up 6.30 and could not get up from bed. So I stay in and let the kids have a day off. Abeerah been sleeping good lately but she having problem peeing regularly. Every one was up by 9.30am and want my attention. So I have to be taking care all of them. I took pain medication and start my day with brushing their teeth and diaper changing. When every body get clean, I bring them downstairs. I try Abeerah come down her self so I do not have to carry her due to my back is unable to do so. She took some time but she did good. I make breakfast (butter toast) for them. Still don't have any kitchen so I can cook and its going to be a while before I have one. My back pain is the reason of that because Every thing from kitchen is in boxes and if I need something I have to go through all the boxes to find it. If there was in normal way i have to empty the kitchen then I can be more organize but the WY i did is where ever water reached I threw things in boxes. So finding spoons, forks, medications, snakes and other stuff is take some times and Zahra do not like to wait and start crying. After every body done eating, I put Barney on them. Bilal did coloring and I rest on sofa. I kept him home because he is a big help to me. Ammar was little cranky and want me to hold him. I was so upset that I could not pick my own baby up. By afternoon Abeerah did make her diaper wet and I call the Dr. She want her urine to be tested. To collect her urine, I have to pick a package from her office. I have a problem of driving there with my back. My friend who use to do picking up stuff for me just have a surgery (she have cancer). May GOD give her health. So I am helpless. Feed the kids. Bilal was ready for his class. I took him there. I came back and clean the house. And it was time to pick Bilal up so I ran there and bring him. Feed all the kids and Bilal was ready for his karate but I cannot take him. I call Zarrar but he was sitting in traffic so I call my brother in law. He take his son there. He came and pick Bilal up. Zarrar came home then my brother in law drop Bilal off too. Today was a sad day for me. One because I was in pain and could not do much. Second I was not able to make to MPS Family Conference which I make reservations and check the plain to go at the last minuet (Because zarrar was not going first due to not having any day off but then my brother said he will help me out and go with me And some one was going help out in Florida) but have to cancel the plan due to the kitchen disaster. Third Mikey lost his battle of life. I hardly get to know him but I really hurt on his loss. We all eat and I make girls ready to bed. Abeerah have two wet diapers. Which is good? I make them ready to bed. Abeerah went to sleep on sofa and I khansa walk upstairs to go to bed. She been doing very good. she couple of time but mostly she is happy. Zahra crying a lot. All she wants is me today and do not want me to do any thing. Abeerah need to brush her teeth so Zarrar help me taking her upstairs. I help Bilal do his homework. And put him to bed. Ammar stay up late. He is learning new words. After every one went to sleep iwent to bed too.
Please don't forget to sign our guest book. It means a lot to us.
Woke up with lots of pain in my back so I have no strength to carry any one or struggle any one. So Abeerah and khansa and Zahra stay home. Bilal went to school. After he left I went to back to bed. Good thing all girls were sleeping. Every one sleep till afternoon. I woke up and I felt better so bring the girls downstairs. Feed them breakfast. So hard to move around with all the kitchen stuff every where. Zahra was happy. I find out the day she sleep good she stay happy all day. I clean up little. Fold some clothes. Bilal came from school. We read books. After he eat, I took him to his class. Make Marconi and cheese for kids. It is so hard to cook with cover pot because ceiling is open and I do not want any thing in kids food. Girls was in good behavior. Ammar is feeling good and he is all over the place. He start touching every thing and keep going in to the boxes and getting spoons and forks out. Later Zarrar came and bring some food that my mother in law send for me. We eat. I feed the girls. Make them ready to bed. Put all of them to bed. Zahra and Ammar stay up and watch Barney. When they went to sleep. Me and Zarrar did some work for couple of hours in the kitchen. Behind walls stuff is wet old and really nasty so it was so hard to breath in. Walls are still wet. We get tired and went to bed after clean the mess that came from breaking the walls.
Monday, December 13, 2004 5:26 PM CST
FRIDAY. Woke up 4.30 with Alarm. Zarrar was already up and getting ready. After he left. I took a shower to keep my eyes open. Make prayer. Then I wake khansa to get ready for school. Give her bath and make her ready. Woke Abeerah up. She was sleeping good and I hate to do that to her. I want her to sleep as much she can. But she have lot of days off this month already. After make her ready. I make lunch and feed them breakfast. After both left. Wake Zahra. Give her bath. She loves taking bath. She did not want to get out the tub. So I carry her then that crying start again and did not stop till her bus took her to school. Bilal also went to school. I clean up. Lilly call that she is not coming today. She will come on Monday. I have so much laundry and so much mess all over. My days are so busy that i hardly get a chance to do laundry so i did some laundry. Wait for the roofing guy but no show. And rain did not stop. Clean some stuff in the kitchen. Get boxes and start putting dishes in it to empty the kitchen. I was really upset to see my kitchen like that. Roofing guy put us in huge mess. So much loss. And so much to repair now. I make some calls to find someone to fix the roof but every one busy till Christmas. Ammar woke up, take care of him. Bilal came back from school and he was happy. He wants donuts so we went to pick up, milk, bread and juice. Stop at dunkin donuts to get him donut and drove back home on time for Zahra bus. But Instead of Zahra, It was Abeerah And khansa's bus. They came early. I carry them inside one after other. Take shoes jackets off then Zahra came home and she was crying. Took care of them (diaper change, Give them Snakes and drinks and put Barney on). Empty some more cabinets. Took Bilal to musjid, Came back and cook, it was so hard cooking keeping it covered so no water fron rain go in the food because I did not want to eat pizza again. Pick Bilal up. Feed dinner to girls. Ammar have fever. Give him medication. Zarrar came from work and had dinner. He and Bilal went to musjid. I empty more thing from the kitchen. Top cabinets are gone. Refrigerator took a bath in water. It looks a small job to empty kitchen but not that small we do pack so much stuff in our kitchens. Took curtain and stuff off. Zarrar came and he start taking top cabinets off. He was tired so he went to bed. I put kids to bed. I update. I have a very tirding day and tomorrow is another one.
SATURDAY
Woke up 6.00. Zarrar was already up. Check on kids and all were sleeping. Ammar stay up all night and cry, he had fever and he want to be held. So I did not sleep much again. Zarrar went to musjid and I did my morning prayer. I was so upset because of my whole house was up side down due to kitchen situation And I see Zarrar looks really upset and worried. He keep saying that he don't know how he will fix it. I do not like when he get in upset situation. I pray really hard for help. And nest minuet I see Zarrar coming inside with happy face. He said two boys are here to help me. I know Husna did make some calls for us. I want to thank a million to Azmat and Wasay for coming for help. Well the roofing guy show up also so after little this and that he was on the roof. Guys help Zarrar clean up. My husband looks so relax and I was happy about it. Roofing guy told us that he have death in the family. Glad he came back even i want to kill him because Zarrar could not do the roof without him. Abeerah and khansa wake up and I take care of them. Bring them down stairs. Both look well rested and happy. I feed them break fast and put movie for them. I clean up some and start empty more stuff from the kitchen. Zahra and Bilal woke up and start playing. Zahra look happy, smiling. Both helpers left after cleaning up. Zarrar and the guy(mr chance) was up working fast. Brother Umer came for help and Thank you so much for the milk. It save me from zahra's crying for not having her starwberry milk first thing in the morning. Umer help us a lot. He help Zarrar taking the cabinet off. Thank to him, Zarrar looks really cheer up. All the kids been really good today so i could help in the kitchen stuff. My mother in law came and Bilal get to play with his cousin. Some neibors stop by and help put the fire up burning some twigs out side. I made some sandwiches. Feed the girls. Ammar woke up after having a long sleep. He looks better but slow. Bilal went with his grandmother and cousin. By evening roof was done. Hurray...Now the thing left is a big hole in my ceiling and all wet ceiling and walls. So zarrar went Home Depot and get stuff to fix the walls and ceiling. I order pizza. Feed every one. Zarrar came back with sheet rocks and insulation. After dinner he went to pick up Bilal. When he return we took one more cabinet off. All the cabinets put in the living room. Zarrar was very tired and he went to sleep. I make girls ready to bed. They been so beautiful today. All looks tired and went to sleep but Ammar time is to be up. My back was in so much pain. I keep falling a sleep but Ammar kept me up. Finally he sleep and I laydown to go to sleep. Just want to thank all the special people who came out and help us. May ALLAh give you lots of Blessing for that. Ameen.
SUNDAY
I was tired so sleep till I heard Khansa's voice. It was 8.30am. I took care of Khansa. Then Abeerah woke up too. I gave both of them bath. Then Bilal woke up and took bath. Then I gave Zahra bath. Bring kids downstairs and carry Abeerah to downstairs and hurt my back. Zarrar was working out side putting the garbage together some of the roof stuff left yesterday due to dark so guy came and get that done. I feed all the kids. Every one setal down, I help Zarrar making the temporary kitchen in my dining Area. Help him pushing the appliances. He start breaking the ceiling and I put stuff in the bags. Took breaks every time Zahar cry or girls need diaper change or need to replay the Barney. Zahra was upset not seeing the kitchen and watching us breaking. All the ceiling was wet. All the insulation was soaking wet aand all the wood was wet. Every thing have to dry before we re do it. I do not know how many days I am going to be without kitchen. Khansa was little not happy today. Ammar looks good today. Bilal help me and play with Ammar while we worked. Feed them And continu working. By night I have too much pain in my back. Picking Any thing felt pain. Feed the kids and put them to bed. After having dinner I went to bed. But woke up in hour becuase Ammar was crying and i have to be up. I did some laundry while he play. He keep me up till he went back to sleep3.30am.
saturday, December 11, 2004 2:19 AM CST
Its been really really busy passed couple of weeks. Kids been sick one after other right after Thanksgiving. Then taking care all five sick children, I got sick my self. I had a really hard time but kids are little better now.
I am sorry for no update for while. I was so busy that I did not have any time to turn computer on and write update. I receive some mails asking for update on girls. That make me happy to know that people do read my journal and keep checking on me. Thank you every one for all of your support and prayers.
SUNDAY.
Woke up 6.00am after having only couple of hour sleep due to Zahra cry most of the night. Finally Abeerah slept through the night after three days no sleep. I check on her and she was sleeping tight. I was happy to see taht... not like other three days when she is screaming, crying and jumping all night long. All the kids were still sleeping. I help my brother (Shoaib) pack up. His flight was 8.00am. I was sad that he have to leave. He stay with me for week and he was big help to me. Zarrar took him to drop him off at the airport. After both left, I went back to sleep. Woke up nine with Zahra's loud crying. Then every one was getting up. Took care each of them morning needs. Bring every one downstairs. Zahra was cry like every day past 2 weeks. Looking at her my heart just stop. It is really difficult to see Zahra changing so much all sudden. I put Barney for the girls but Zahra is not interested in. She is like my shadow. Just staying with me every second. I make breakfast and feed all the kids. Bilal helping me a lot since it is hard moving with Zahra stuck to me with her crying. Khansa have a diarrhea so she was going through many diapers and many dirty pants. Bilal colored pictures. He is little happy because Zahra not bothering him with his stuff. Abeerah was happy and making so much noise today. I clean the bed rooms. Zarrar stay busy on computer. I cook dinner and feed every one. Abeerah and khansa watch lots of Barney and blues clues today. By 8.30pm i make girls ready to bed. Took them upstairs. Brush their teeth and put them to bed. Abeerah did not want to sleep. She keep walking in the hall way. Zahra stay with me and she keep crying. At night she get louder and every one get upset. But nothing making her stop and nothing is making her happy. Only thing she wants is me. I clean the kitchen. Went to put Abeerah to bed again and there was that smell...khansa make her diapper dirty in her sleep and bed was dirty too. So I took her to bathroom and clean her then change her bed cover and put her back to sleep. Then I laydown with Zahra so she have some sleep.
MONDAY
I woke up little late becuse alarm did not go on and Zarrar was late for work. He got ready fast and left for work. I check on girls. Abeerah was awake and happy. She did not have any sleep last night. I make her ready. Her diaper was dry and she have not pee since yesterday, just one time poop. I Carry her downstairs. Make her lunch and feed her breakfast. Khansa had a diarrhea she have a bad runny nose. After Abeerah left to school. I woke Zahra up and she get up with her crying. Hardly make her ready on time because she was not cooperative at all. After she left, it was Bilal turn. He give me hard time in eating. He do not eat much and every thing he hates to eat. After he left to school. I make bottle for Ammar. Lilly came for help. She clean the house and wash clothes. I help some. Took care Khansa's needs. Feed her breakfast and I have some sleep while Lilly watch khansa. Bilal have early dismissed today so he came 12.30pm from school. I have Bilal and khansa's appointment so I make Ammar, Bilal and Khansa ready. Put them in the van and drove to Hackensack. Its about 25 minutes drive. DR Tantawi check Bilal, he is complaining head ache every day. Her nose also runny all the time. And he also grind his teeth at night. DR check his eye side also and that is fine and she gave medications for him. Then she check Khansa. So many questions to ask her. She gave medications for her from her office. It was about time for Zahra's bus. I drove fast and make it right on time while bus pulling in front of my house. Get Zahra and guess what...she was crying. Receive Abeerah from bus. Her diaper was not wet not like other day. So it make me worried. After taking care of her. Make Bilal ready for his class. Drop him off, i took Zahra with me but she cry all the way going and coming back. Make dinner while Zahra cry right next to me. If she stop for second that mean she is chewing something. She start chewing on any thing she find..her own clothes, my shirt, wires, papers, books, tapes and any thing she grab. She have so much fear in her eyes like I will leave her some where. I have some chat with friend Kathy, she have a daughter with MPS, while Zahra cry. She get louder if I don't hug her in five minutes. Kathy told me for some medication for Zahra to calm her down. That give me some hope. I will get it tomorrow. Feed every one. Give medication. Make them ready to bed. Put Abeerah and khansa to bed. Abeerah did not wet her diaper at all. She drink and eat well all day. Zahra did not want to sleep on her bed so she sleep with me.
TUESDAY
Woke up 4.30am with alarm. After Zarrar left I went back to sleep because every one was sleeping good. Woke up again 6.00am and wake Abeerah and make her ready. Then khansa turn. Khansa looks so much better and she was happy. After both left. Wake Zahra up and make her ready. She was crying but not too much. She eat her breakfast good and help me putting things for her lunch for her school. After she left. I make Bilal ready for school. Today is his re picture taken day. I hope they take his eyes this time. After he left. I clean a little. All the diaper and dirty clothes every where doing hurry in the morning. Ammar woke up so I play with him and feed him breakfast. We both get ready and I went to get medication for Zahra. Did not find it in closer stores. Went to valley city to return stuff That my brother shop helping me, they were all wrong sizes. Too much rush every where at this time of the year. Took too long standing in line. After return it was almost the time of Bilal bus. I drove fast to reach home. Get him from the bus and went to library. Return his books and get lot more. Stop at the meat store to get some meat. And stop drive threw bank for quick. Came home. And Zahra bus was already there. They came 5 minutes early. She was crying. bring every one inside. Make them comfortable. Then Abeerah and khansa reach home. I receive them from bus. Bring them inside make them comfortable. Quickly took Abeerah's note book from the bag to see what teacher wrote in answer of about her wet diaper and teacher wrote she did not make any diaper dirt or wet. Now it is really getting me worried. I call the DR and she said for watching her over night today. I gave Abeerah lots of drinks so she goes. Took Bilal for his class. Cook. Pick him up. Feed every one. Zahra cry but little less. At least she eat some today. I make Bilal ready for his Karate and took Ammar and Zahra with me and Zarrar watch Abeerah and khansa. Zahra cry all the way even her favorite Barney was on in the van. After drop Bilal, I sat in the van with kids and watch Bilal doing Karate from out side. When he finish, we came home. Zarrar was playing with Abeerah and Khansa. I give them drinks. I want Abeerah to drink a lot so she goes. Make kids ready to bed. Took them Upstairs and put them to bed. Zahra was very sleepy so she just fall a sleep in her crying. Abeerah did not sleep and keep jumping and banging on to walls. I check some mails and went to bed. But could not sleep because Abeerah was very loud and very hyper. I keep putting her on her bed but she keep getting out and secreeming. I check her diaper time to time. I pray she goes so I do not have to put in the hospital. By 3.30am she did some pee and that was that first time I was so happy changing diaper. Ammar woke up and he was talking so much. I made his bottle but he did not went back to sleep. Abeerah stay very active all night long.
WEDNESDAY.
Abeerah have no sleep all night and she stay very hyper all night long. So I was really tired in the morning. But glad she wet couple of diapers last night. After I send every one to school. I clean up and went to sleep with Ammar. Woke up with noise like some one breaking my roof. Three was people breaking the roof to put new one. I have a leak in my kitchen roof and water leaks every time it rain so Zarrar hire people to fix it. I took care Ammar's need and get ready to go out. i have to find the medication for Zahra from health food store. So I look couple of stores but did not find what I was looking for. Came home on time for Bilal's bus. The guy took me to Show that we have big hole in the roof and all the wood was rotin and gone so we have to replace the wood too. Zarrar came home to get the wood and I got busy to bring the girls from buses. Abeerah came very hyper but did not stand on her on. Zahra was crying a lot and start follow me every where I go. Took Bilal to his class at musjid. Guys were working on my kitchen roof so I did not want to be down there cooking while I know the wood on the roof is no good. So I order every ones favorite pizza. When Bilal get back, pizza arrive too. So I feed every one. And make kids ready to bed. Took them upstairs and put them to bed. Have some mails to answer. Went upstairs to go to bed but Abeerah was really jumping and making noise. She was no way to close to sleep. She was so active. With her secreems Ammar woke up and now I have two of them do not want to sleep. I bring them downstairs in the living room so other can sleep. Today is Abeerah third night of no sleep. I gave her warm milk to calm her down. Medications make her more hyper so I do not want her to give any. All night I just did up and down staires. Keep putting her to bed and she keep being hyper and no sleep.
THURSDAY Abeerah and Ammar was up all night so I did not have any sleep. Ammar went to sleep 4.00am and Abeerah got little slow down. I just lydown to rest and that was it. I could not move my self. My back was in lot of pain Carrying Abeerah up and downstairs. So I have no way to make girls ready for school. I call the buses for not to come. I wake Bilal up later when my back get little better. After left to school. I want to lydowm. I gave Abeerah glass of milk in her SIPP cup and put Barney for her. she was calm down a little. I check for the guy doing our roof did not came. I put his every thing out side so he can work without need any thing from me. I bring Khansa to my bed and me khansa, Zahra and Ammar all slept on my bed till after noon. Woke up with every one. Took care each one. Zahra looks so happy and look well rested. She help me a lot. I was so amazed to see her after so many days of non stop crying. My mother in law came to visit and she was also happy to see Zahra not crying. I check from upstairs window but guy was not there to work. I call Zarrar and told him that he did not came yet. I wait and wait for him. My roof have a big hole right on top of my stove. By evening i got really nnervous because it was going to rain at night. Abeerah was very hyper all day. It was really difficult to change her diaper because she did not sit still for one-second. Khansa was really good. she was very quite and sit still most of the time. Zahra stay with me doing cleaning, feeding kids and all house hold stuff. She give me lots of hugs and lot of smiles at me. She eat well. It was so relaxing to see her like that. Zarrar came home and he was really upset. He climbed on roof and put tarp on it. Try to tie on corners because it was windy also at night. He start cleaning the mess was that was all over the yard came from the roof. By evening it start raining and my ceiling start leaking from every where. Every thing in the kitchen start getting wet. I have to start empty the cabinets there is so much stuff in the kitchen. Zarrar put pots under every hole. Friend of mine just have a surgery, she have cancer. So I want to see her so Zarrar watch the kids. I get ready and first drop Bilal at his karate, then pick my mother in law up because she also want to see her. So we went to Hackensack hospital. It was raining bad. We spend some time with her. Then I drop my mother in law back home and came home. Zarrar feel not too good so he went to bed. I feed the kids. Abeerah did look tired After three days no sleep. So I put her and Khansa to bed. Then put Zahra to bed. Bilal have homework due tomorrow so I help him. We read a story and he went to sleep. I have talk to Kathy (Sarah MPSIII mom). Thank you so much for all the cool tips. Then I chat with Hunsna. She been really a great support to us. She help us so much. May Allah bless her. Amen. Ammar woke up. I guess he got in to this late night get up routine to keep me up. I really try to put him back to sleep. I came in the kitchen to make his bottle and my kitchen have water every where. I empty pots and put it back again. I went to sleep around 2.30am. after Ammar fall a sleep.
Sunday, November 21, 2004 0:06 AM CST
FRIDAY.
Happy Birthday to ABEERAH.
I woke up 4.30am And wake Zarrar up. After he left to work I went to check on Abeerah and khansa. Abeerah was sleeping but Khansa was up and sitting on her bed. I took her to the bath room and make her ready for school. Then I woke Abeerah up. Give her long Birthday hug. And make her ready for school. Making her ready my heart just feel stop, How can I look in her eyes. How can I go on knowing today she is 8yr old and don't know how much time she have with us? I just pray and give her lots of love. I bring both of them downstairs and put shoes and jackets on them, pack their lunch and start feeding them breakfast when their bus arrive. I put them on the bus and Bus driver sing Happy Birthday to Abeerah. I feel really sad when bus left. Then I wake Zahra up and there was same old loud crying. I guess now I am getting to use to that. I make her ready and send her to school and then wake Bilal and make him ready. After he left to school. I clean a little and went to lidown with Ammar. Wake up 10.00 and wake Ammar up. Take care of his needs. I make some goodie bags for Abeerah class mates. I get ready and make Ammar ready and we went to Abeerah school with cup cakes to have Abeerah Birthday with her teacher and class fellows. every one gather around the table and sang Abeerah Happy Birthday. Khansa came with her one on one to join us. Every one eat cupcakes. We took some pictures. Abeerah got gift from her one to one(Argin). Thank you for the prasent. Abeerah really loved watching the robot sing. I had a good time watching Abeerah so happy. I had to run back because Bilal’s bus was coming soon. I drove back home. Receive Bilal, Then Zahra came home and then Abeerah and khansa came home. After I took care of their needs. Lili came for help. She wash their clothes and clean up while I cook dinner. Husna came over to meet us and she fill up some papers for me. Bial and Zahra did some coloring while we were busy. Zahra really wants to show Husna her color work. Thank you Husna for coming overand being such a good friend. After she left, I feed all three girls one by one and also feed Ammar. Then Bilal, me and Zarrar had dinner. Girls were in good mood. We all came around the table and we have a cake for Abeerah’s 8th Birthday. We pray for a healthy and happy next year for her. Abeerah and every one have fun eating it and playing with it. We all laughed on little silly things. Took some picture to freeze the happy moments. So hard to keep all of them in one picture. We had a great time today. Girls behavior was so good today. I took every one upstairs and make girls ready to bed (brush their teeth, change their diaper and stuff). Put them in their beds. Give them night night Hugs. I really got in tears saying goodnight to Abeerah. Put Zahra to bed and put Barney on for her. She only go to bed watching her Barney tape. Read story to Bilal. And put him to bed. Ammar watch Barney with Zahra. Clean up the kitchen. Zarrar and I listen to some question Answers on Internet from Mufti sahib. Put Ammar to sleep and went to bed praying for Miracle tomorrow.
Please don't forget to see Abeerah's Bithday and EID pictures.
Monday, November 15, 2004 9:54 aM CST
FRIDAY.
Wake up 4.30. After send Zarrar to work. I make the girls ready for school. First Abeerah and Khansa left for school. Then Zahra went to school. Make Bilal ready and when i was putting him on the bus his nose start bleeding and bus driver did not want to take him. I bring him inside and make him lay down and put cold towel on his forehead. He get better in hour so I wet to drop him off to school. Coming back home i stop at the market and buy some fruit and vegetables to make sandals for tonight IFTAR(dinner). Lili came and help me clean the house. After she left I went to get some meat. Came home and start cooking. Went for Jumbo musjid. Came back, receive kids from buses. Cook and cook. Every one came at 4.30 and we ahad a great time? Abeerah and khansa love the company and they were very good whole time. I feed them dinner. And make them ready to bed while my mother in law watch Zahra and Ammar. I Put Abeerah and khansa to bed. Bilal had a good time playing with DR Imam's daughters Sara and Sidra. After every one left, I clean up the kitchen. Put Ammar to sleep. Bilal and Zahra was tired after all the running around the house with other kids so they went to sleep right after I put them to bed. Then I went to sleep.
SATURDAY.
Woke up little late because no school today. Zarrar was not home. He went to take care some stuff for EID day for the EId prayer. After i took care the kids morning needs. I put Barney tape on for them and Bilal play with his cats. I start sewing for girls dresses for eid. I could sew fast but every other second I find Zahra up to something and I have to get up and take care of her. Feed every one lunch. Girls been doing so good this week. I want to thank every one for the prayers. Last couple of days lost of people make prayers for my daughters and I think its working. Please continue keeping us in your prayers Even Ramadan is finishing. At 3.30pm i make every on ready to go sight the moon. It was lot of work to make each on ready and put layers due to the cold weather. Put every one in the van and drove to Bergen mall parking lot because it is a large area without trees so sighting will be easy. I want to see the moon my self because every year is a big misunderstanding is going on. Moon sighting is very important for every one. And who ever sight the new moon (HILAL), gets lost of blessing. Me and Bilal try hard but did not see nothing, Later we saw my sister in law was also there parked closer to us. They gave me cup of tea and i was cold standing out side in cold and tea really helped make me warm. Girls watch Barney inside the van. I was not happy because we did not see the moon even sky was clear But atleast we did try. I call Zarrar and he went with lost of other people on different location but they did not see it either. WAy back home we stop at the Pizza place like i promise Bilal but my pocket book left home so no pizza. We came home bring the girls inside. Feed them with left overs from the dinner yesterday. We get lost of calls for moon sighting and I make some calls but no one sees it till 8.00pm. But by 8.30 so many places got confirm sighing like Washington, Florida and Chicago. And tomorrow will be EID. After i put girls to bed. I went back to sewing. I sew then i paint on their dresses with shining silver color. I am sure they will look so beautiful tomorrow wearing these dresses. Clean the kitchen. Ammar woke up so i want to try his out fit on him that my uncle send me from Chicago but he did not fit in to it. So I got worry i have nothing to put on him. After he went back to sleep I dig for fabric and sew, within 45 minutes he have something to wear for eid. I Iron every ones clothes and went upstairs. Put Hina on my hands and Zahra was sleeping with me so i put some on her hand. It was 4.30 in the morning and I want to have some sleep. I went to bed.
SUNDAY.
Woke up 5.00am. and wake Zarrar up. He have to go because he was in arrangement. I went back to sleep and woke up5.30am and i was on run because i have to be at the place for Eid prayer at 7.30am. And parking was the big problem. I took quick shower and gave all the kids bath. Dress them. Dry and make their hair. Put shoes on them. Give them quick breakfast and pack our bag with some snak and diaper stuff. Zarrar keep calling to make sure I was coming because he have a spot for me to park. Put strollers in the van. Buckle every one up. And drove to the Armory. Zarrar help me park closer to the door. Unload the kids and we went in. So many people was there. After the Salat we meet every one that I had not meet for long time. EID MUBARK TO EVERY ONE. Kids got balloons and candies. We had a good time. At 11.00am Zarrar help me put the kids in the van and i went to my mother in laws house to meet every one. Zarrar did not come with us because he was working to clean up the place. We stay at my mother in law place for hour. I feed the kids there. Then girls start getting uncomfortable so I want to leave. Qasim(oldest nephew) help me put the girls back in the van. Bilal saty there because all the cousin were together there and he wants to play. We drove home. Zarrar was there and help me unload the girls and took them in the back yard. Girls playground and jump on tramplain little. Abeerah eat some leaves while I was running after Zahra because our fence is still not fixed and tree is still lying there. It was getting cold and I was tired. We all came inside. Make girls comfortable. They looks so nice in their outfits. They look like stars sparkling in the sky. Only thing i wish they could turn arround and show me how beautiful they look. I feed them and clean up the house. Zarrar spend time on computer. My sister in law came to visit because i did not meet her at my mother in laws house, she went some where before i reached there. We eat lots of sweets. After she left make some calls to say EId mubarak to the family. Zarrar was going to get Bilal but my sister in law drop him off on her way back to Boston. After the dinner I start putting kids to bed. MY back was in so much pain. But we had a good day. Girls was really tired end of the day. And I am sure they will sleep well today. After kids went to sleep I just find a spot and went to sleep. I had a very busy day today.
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Don't forget to see new EID pictures.
Friday, November 12, 2004 1:03 AM CST
MONDAY
After Zarrar left to work. I check all the kids and very one was asleep. I still had an hour to pass to wake the girls up so i went back to bed but when i open my eyes i was 20 minutes late to make girls ready so i had to hurry to make them ready before their bus arrive. Khansa was already up and wake Abeerah up. After i make them ready (brush their teeth, change their diaper, change clothes, put shoes and jackets on), I gave them milk to drink and went in the kitchen to make their lunch box ready for school. I make breakfast to feed them and when I came back in the room, Khansa took her clothes and diaper off and poop was all over on her. I quickly took her upstairs and I have to give her bath because even her hair was dirty. Right then bus arrive and I cannot even go to the door to tell the bus so I call the bus company to tell the driver they are not going in the bus. After I gave her bath and put clothes on her. Make Zahra ready and her lunch ready. I was really rushing because their bus don't wait. After Zahra left I wake Bilal up to get ready and gave Abeerah bath because she was also in the same room with Khansa. After Bilal left make Ammar ready and get my self ready. Put Abeerah, Khansa and Ammar in the van and drove to Clifton to drop them at their school. I drop them off, meet Khansa's teacher Maria and one on one Miss Najla. Miss Najla gave Khansa a beautiful blanket for EID gift. Thank you Miss NAJLA. I spend some time in her class room. Meet miss Qaleen and order some equipment for girls. she is Khansa PT. I borrow two wheel chairs from school so Abeerah and Khansa can go to EID. Spend some time with khansa's OT while she gave her theropy.Then i went to see Abeerah in her classroom and meet her teacher miss Beth. Abeerah was making cookie and having fun playing with cookie dough. Her speech therapist miss Petty was with her. I try to call Abeerah but she did not even look at me like she use to look at me and smile. I try to get her aatention but she was like she don't even know me. That break my heart. I could not stay in her class becuase i just want to scream and cry out loud. I was leaving when I saw Mrs. Miller, the principle. She is really a sweet lady. I talk to her and she play bit with Ammar. And we say bye and I drove to meat store near by and bought some meat and went to Fabric shop to buy some fabric for girls dresses for EID. Store owner knows my in laws. Both mother and daughter was really nice with me and ask for my girls. In the end they did not charge for all the fabric i bought. Thay gave me as a gift to my girls. Thank you. Fabric is pretty and velvet and i know girls will look nice in them on EID (if i get time to sew). I came home put meat away. Clean little. I had some time before girls get home so I went to change Abeerah's jaket because the one I bought was small on her. I spend some time at the store to find a jacket with hood but when I cam to pay there was so long line and stay but it was not moving and it was time when kids come home. I try to call zarrar if he can receive kids but he was away from his phone so I left the jacket on the counter and drove fast to home. Reach just on time for Bilal. After girls came home. I settle them and feed them. Zahra was not happy. Abeerah and khansa looks tired and calm. They doing much better last couple of days. I make Bilal ready for his karate and drop him off. Zarrar watch the kids. Came back did some cooking and then went back to pick Bilal up with all the kids because Zarrar had left. Came back feed every one and make them ready to bed. After Abeerah and khansa went to sleep. I call Mrs. James to watch Zahra so I can go to KHATAM QURAN at the masjid. She is an old lady and she came and sit to watch Zahra. I put long Barney tape on so she don't bother Mrs. James because she cannot do much. Ammar was sleepy so I left him too. I took Bilal with me and I had a good time for 2 hour break. Meet so many people that i did not see them for while. Came back, check on Abeerah and khansa(they were sleeping tight) and put Bilal and Zahra to sleep but Ammar was awake till 2 at night and he wants to play so I could not sleep till he falls a sleep. I had a very busy day.
THURSDAY.
Woke up 5.10 and wake Zarrar up and he left in hurry not to be late to work. I was so tired so I went back to sleep and woke up 6.30 to make girls ready for school but I was tired and could not able to open my eyes. I did not had any strength in my body to carry Abeerah and make her ready to school so I lie down. Zahra had temperature so she was not going to school either. Later wake up Bilal and make him ready to school after he left I wake the girls up and bring them down stairs. Feed them breakfast. Give Zahra medication. she have bad exima and she keep scratching her body. I put medication on herarm, back, legs and on her stomatch. She did not like it and keep runing away. She scratch her back standing against walls and moving right and left.(like Balo in JungleBook). In winter her exima get worst and she bleed from all over her skin. At 11.30 I call Mrs. James to watch the kids because I have a meeting with Bilal's teacher which i cancel before already. But Mrs. James was not home and I have to find a baby sitter. Call here and there but no on was available so i call back to Mrs. James daughter crystal if she can just come for 30 minuet and site here, I will make it quick. I make sure very thing was OK so she do not have to change diaper or feed and stuff. Ammar was sleeping. Girls watch TV. I reach at Bilal school. He have early dismissed because of Veterans Day but he stay in school for me. Miss Calahan (Bilal teache)told me Bilal is very good kid and doing good. That make me happy to hear. Did talk on some other stuff to help Bilal. I tooK Bilal and ran home hurry. Did some cleaning around the house but feels really tired and sleepy. I think it the 10 cup of coffee I drink every day to keep my self awake but due to Ramadan I am fasting so I am not having any coffee. I feed the kids and Abeerah and Khansa looks sleepy so after dinner I put them to bed. I took them upstairs to their room. They looks good today and they both were very calm. I lie down with khansa and sang some songs to her. I have no idea when I fell a sleep with her. I woke up and ran out fast to check on Zahra. She was playing with Bilal's blocks and Ammar was playing with Bilal. One of tree fell on our fence on Saturday and break the fence and fell on electric wires. It is so dangerous one thing and other Zahra have way to get out to run on street. Fire department came twice and put yellow tape around and told us they will send somebody to cut it. But it taking so long and I have so much fear that Zahra can go that way. Sahe can get electrocuted. I make Zahra to ready to bed but she is not sleepy. Zahra and Ammar watch TV and I fell sleep again for while. Zarrar came and make tea for me. I drink that gave me some energy and Wake me up. I clean the kitchen and help Bilal do his homework read him three stories and he fall a sleep. After I rock Zahra little, She was really unhappy and keep crying. After she went to sleep. I want update the journal that I did not for couple of days. I hope I have more energy tomorrow because I have IFTAR(dinner) here for some friends and i have to shop and then cook.
Eid will be on SUNDAY. Moon can not be seen on friday any where in USA acording to moon sighting. Every one have a happy and healthy EID MUBARAK.
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Thursday, November 4, 2004 11:36 PM CST
I am sorry for not updating last week. I have been really busy and did not have no time at all. My computer is in the basement and I update only when every ones goes to sleep but last couple of days one of the girls did not sleep. But thank God girls are doing better now.
TUESDAY
After Zarrar went to work. I start waking the kids up for school. Abeerah was already up and happy. I make her and khansa ready and bring them downstairs. Feed them breakfast and pack their lunch. Abeerah was in her good mood but Khansa seems not happy. While I was putting jackets on them, their bus arrive. After they left i wake Zahra and there was her loud top of her voice crying like every day. I have to struggle to done any thing with her. I make her ready. Today is her appointment for her physical that school really after me to get done it. i wrote a note for the teacher that i will be picking her up so do not send in her bus. I made the appointment moth ago and my plan was to pick Zahra up and take her to DR and make it home before rest of the kids come home but yesterday i got the note from school that girls are coming home early due to election. And they will be home the time Zahra have to be in DR office. That was a problem. If I cancel then Zahra have to dropped out from school. I spend yesterday whole evening to find some body could receive the girls from bus. I could not find any one. After Bilal left to school. I try one more time but every one have something to do today. No one was available. Finally I call Zarrar, and he said he will try. He do not have any time left to take off. But after little while later he call me that he will make it. I make Ammar ready and went to buy winter jackets for Abeerah and khansa because they are cold in their old jackets. Then i stop by TOY R US to buy safety gate that is broken in girls room and i have to jump over it witch gives me back pains last week. I also need safe guard for their beds because they are falling from their bed middle of night. I am so scarred for them to break some bone or get really hurt because they are so fragil kind. I put all pillows on side so they don't fall. But TOY R US did not have the one i want. I drove home, Zarrar was home already, Hand him Ammar and drove to Zahra's school. I was running late so I just pick up Zahra. Met her teachers fast and ran from there. I have no idea how to get to Hackensack from Rigfield but driving, turning I made it right on time. DR check Zahra but she do not like any one to touch her so it was not an easy check up. She got one shot and DR Tantawi wrote couple of prescription for her and we were on our way home but Zahra did not forget the get lollipop before she leave the DR office. I was on my way home then Zarrar call and told me I have to stop at Bilal's school because somebody hit Bilal. I stop there. Bilal was already went home but I meet the teacher. Every thing was all right . some kid hit him in the play ground and every thing was under control. Reach home and get busy. Clean, cook and diaper change. Feed every one. Girls looks really tired. Make them ready to bed (brushing teeth, diaper change) and put them to bed. Bilal went to sleep after i read story to him but Zahra stay up late watching Barney. After cleaning the kitchen, make prayer, I went to bed.
WEDNESDAY
I woke up but could not move because I have pain in my back. Could not help Zarrar to getting ready to go to work. I just stay on bed and don't know when I fall a sleep. Woke up late. Late for Abeerah and khansa's bus so i call the buses that they are not going to school. Khansa was up and really screaming. I bring her dowmstair nad give her some thing to drink. Bilal bus came and he was not ready so I have to go and drop him off to school later when my back got better. Abeerah, khansa and Ammar was still sleeping so friend watch the kids. Came back, wake every one and bring every one down stairs, feed them breakfast and put Barney on for them to watch. I lie down there to relax my back. Later, I clean the house. Make beds and feed some snake to the girls. Bilal came from school 2.30pm. Feed him. He play around a little. Make every one ready because Bilal have karate class today. It took a while to put shoes and jackets on every one and make sure all the diaper were clean. Drop Bilal at his class and drove the van and park it where I can see Bilal doing karate from his karate glass windows. All the parent go up and cheer their kids but I have my girls with me who do not like to sit still so we stay in the van. Girls really happy going out. They watch TV in the van. After Bilal done. We came home. Unload the kids and bring them inside, Take shoes and jacket off and give them some drinks. I was late to cook so I just make tuna sandwiches today and every one eat good. Give every one medications. Make them ready to bed. Khansa was really laughing a lot and I think she is not going to sleep today. Put every one to bed. But Khansa and Zahra wants to stay up. Zahra went to sleep late at night. I have to keep an eye on khansa so I check on her time to time. Last time I check she was sleeping sitting up so I make her liedown and went to bed arround 2am. Tomorrow is another day. Kids are home for next four days because there is a teacher conference and Thursday and Friday schools are close pulse the weekend.
THURSDAY
Woke up 4.30am. Make saher(breakfast) for Zarrar and after he left, i check on kids. All were sleeping tight. So i went back to bed because there is no school today. And that was the best time for me to have rest. Bilal wake me up 9.ooam because he wants help in the bath room. As soon as I get up from bed, Zahra and Ammar start crying getting up, looking for my attention and need my hugs. Abeerah and khansa wake up same time and looks good but there was I have a long chain of sneezing. So it is going to be a bad allergy day today. I hate allegro day because this day I will be miserable all day with water eyes, sneezing one after other and non stop runny nose. Cannot take medication because I was fasting. But no vacation for mom So start my day with brushing every ones teeth and changing diapers with my 100 of sneezing. Girls was happy and well rested today so that was a good thing. After I feed every one breakfast, I put ELMO tape on that Toys are us gave it to us as a gift after spending some money there. Bilal wants me to read books for him so I start reading but due to watery eyes I could not see nothing so he end up playing video game. Ammar was crank. And want to be held. I lie down on the sofa with him. He went to sleep. Girls were on there best behavior today and I was so happy because I could not do much in my allergies. Khansa was drooling a lot today and keep making her shirt wet. Abeerah was moving a lot and keep getting stuck her self here and there. First She stuck her hand in safety gate bars then stuck her foot in sofa then stuck her self behind the sofa. Then stuck her leg between sofa and window. Feed them lunch and some snak in between. No cleaning today and house was so messy by afternoon but I can't help it. I hate to be sick because these kids all have is me. Diaper changing was the hardest thing for me today but girls have to keep me busy and went through lots of diapers. In the evening my condition was really worst. But after opening my faste I took medication and Tylenol for all the head aches when I felt better, I cook dinner and feed every one. Bilal was big help for me today. Put every one to bed. Like always, Zahra does not want to sleep. I gave her medications and she watch her Barney tapes lying on her bed late night till she falls a sleep. Tayyaba
Saturday, October 30, 2004 6:37 PM CDT
WEDNESDAY.
Day start same way, early 4.30am. after Zarrar went to work, Give Abeerah and khansa Baths and make them ready for school. Same thing happen like yesterday, need of changing diapers the time bus have arrive but thank God not head locks. Zahra was not going to school due to the cough so I was relax. Feed the cats and the fish. then wake Bilal to get ready. After he left, Clean up. Make appointment for Zahra for her deep cough and Make Zahra and Ammar ready. DR Tantawi was not available so Dr. Ladak did the check up on Zahra which she did not like and really give Dr. Hard time. DR Ladak is leaving Hackensack pediatric and we will miss her. Zahra lungs was fine but she have upper congestion so she gave me prescription for antibiotics plus cough syrup. By the time we got done, I have only 15 minutes to reach home to pick up Bilal. We made it without getting medication. Make Bilal ready for his karate class, receive girls from bus and put every one in to the bus and drove to TAE KNOWN DO but their was no class. we was not inform due to bill had cold last week and he miss classes. Today was belt change ceremony and Bilal was getting a yellow belt so we came back. Take every one out of the van and sattlethem down. Feed every one. Make Bilal practice and get ready to go to the event. Call Mrs. James on the short notice to watch the kids. She is an old lady can do much just sit to watch the kids so I have to make sure every thing will go smooth so Mrs. James don't have hard time. Put Zahra Barney on and keep her away from the other girls from any trouble. Then take care Ammar's needs. It was fun watching all the kids getting new belts. Bilal break piece of wood with one hit. It was amazing. He was the youngest kid there. He looks so cute in his uniform and say so many funny things to make the whole room laugh. Zarrar make it to the end. It took about two unexpected hour till he get his belt and trophy. So I could not stop to get medication because it was so late for the girls. When I came back girls diaper need to be change. I change them feed them. Then ran back to get Zahra prescription from walgreens. It was a long wait but Pharmacist was nice and she make it quick when I told her the situation. I fly home and put Abeerah and khansa to bed. After Zaire, and me went out in the Yard with blankets and binoculars to see LUNAR ECLIPSE. It was so beautiful. I never seen that before. We loved it. Put Bilal to bed and Zahra still not done watching Barney so we all lie down and she went to sleep.
THURSDAY.
Wake up 4.30am same every day stuff. After kids went to school, I have to sit down because i got hurt in my back caryring 60lb Abeerah from the stairs. Then child gate is broken since last two day so we are jumping over but jumping with 60lb Abeerah 45lb Khansa and 42lb Zahra who feels like 70 lb when she is crying and do not want to cooperates then caring Abeerah to the bus crossing 6 stairs from front porch to the street. God. My house is not handicapped at all. Back pain did not let me do any thing. I play with Ammar. Today is his birthday. He is really cute and calm. He is a blessing to have. HAPPY BIRTHDAY TO AMMAR. Wrote Some bills that I have not done for long time. Kids came home. KHANSA was crying so loud. Teacher wrote she cry all day and being very hyper at school. She was hyper and keep walking in circles. Changing diaper was hard on her. I gave her Tylenol, if she have some pain some where. But she cry and cry. Take care Abeerah, Zahra was sleeping in the bus and she keep sleeping till evening. It was so nice of her. She looks so cute when she is sleeping. Good thing Lili came to clean up. Big help. Cook dinner, feed every one. By then KHANSA got little better. Make them ready to bed. I hope all sleep tonight because my back is still hurting.
FRIDAY
Woke up late due to sleep very late last night reason one is my back was in pain and reason 2 is Abeerah was up last night. So zarrar left without eating any thing. I pray and make kids ready for school. After all left, clean up and spend some time on computer. Make Ammar ready and did left for meat shopping. I was having an Ifter party today but change it to Sunday because Zarrar cannot make it today. Every one school have a Halloween party and i was invited for all four children school but Ammar was not well and if i go one child school then its not fair to the other one so I did shopping instead. Every one came home with tons of candies and stuff. Zahra have a prade around the block wearing cutomes. I miss that. She went pumpkin picking yesterday and bring a big pumpkin with her with all the candies. Abeerah and khansa's bus came and i went to get them and bus aid was so upset and she burst on me that Khansa cry all the way home. She is hitting every one and out of control. She make all the other kids upset. She hit her sister with her head again and again. It can not go on any more, you hav eto do some thing about it. I could not hear what she was saying any more. My heart feels like crushed. MY so sweet angel cannot hit people. People cannot be bothered by her because she been so beautiful and calm. I always says she is the essayist one to handle. I cry for hour when I get back inside and read a note from teacher that she did not do good at all today. She keep pocking finger in others and her own eyes. Khansa was very hyper and she was making way too much noise. She looks not happy at all. I try to give her hug and she bite me and scratch my neck. She keep going to Abeerah and biting her. and she was hitting her head to the walls and she was hitting her sledf so hard on her head. I never seen such a behavior before. My sweet princess turn in to a wild. I went in the room to change Ammar's diaper and Khansa came so fast while he was on the ground get diaper changed and she bite him right on his nose and poor boy cry.... Zarar came home and then he left for his meeting. Zahra was sleeping since she is back from school. I was taking care khansa when Zahra woke up and went in the kitchen and break 12 eggs on the kitchen floor, she took the eggs from the refrigerator and it was hard to clean eggs and took me hour to clean. I gave khansa resperdol and later gave her tylanol if she is in pain some where. I took Abeerah out the room and took her to feed in the kitchen and sit her down on the high cahir. While i was feeding, Zahra keep coming with a grape in her hand and try to feed Abeerah and she bend down to eat it. Third time she try to give her the grape but keep moving backward and Abeerah mouth follow the grape with her but in sec she was on the floor hitting her face first. Oh boy, she cry and cry. Ammar got scared of khansa' noise and start crying. Now i had 3 crying kids and all need attention to stop. I don't know what to do. Who should I look after. We all eat left overs today because i did not cook today. Put Abeerah and khansa to bed. Abeerah was still crying. I hope they sleep tight. My heart was hurting so much looking at both of them. May God help them in their suffering. Bilal went to sleep after I read a story to him but Zahra and Ammar was up till one at night. I check on Abeerah but she was lying on bed but not sleeping and crying time to time. I make prayer and went to bed. It was 2.30 and my whole body was in pain specially my heart.
Don't forget to sign in our guest book to let us know you stop by. It means a lot to us. Tayyaba.
I Woke up 4.30, wake Zarrar up And make his breakfast. After he left to work I start making the kids ready for school and start from Khansa, then Abeerah. Make them ready, feed them breakfast and pack their lunch and snakes for school. After both left, wake Zahra up and that is a hard work because she cry out loud till she see her bus. Nothing helps. Not even Barney. After she left to school, I was very happy. Girls went to school after 5 days. They are feeling really good today. Thank GOD cold is gone from my house. After Bilal left to school, I clean and then I just want to sleep because I have very busy five days. I have a long nap with Ammar. I have so many plans for today, so many things have to do that could not done it due to girls were home but i was really tired and to go on sleep was really needed for me. Later we both up and took care Ammar and receive kids from school. Make Bilal ready for karate and put all the kids in the van to drop him off for his class. Drove to bank and did some bank stuff through drive window while girls watch Barney in the van (Thank god somebody invented that thinking of me). Pick up Bilal. came home unload the kids and settle them down (Take shoes, jackets off, give them drinks and put TV on for them). Make Iftar and make dinner. Feed the girls. Zarrar came and he wants me cook for the poor guys working on the drain at the musjid. so I make more quick dinner for 12 guys. I am happy I could help out. Poor guys been digging all day to fix the big soure back up problem. Put kids to bed. Zahra and Ammar did not sleep till 1.00am. I have enough sleep today out of my schedule so I did some cleaning, and prayers. Then went to bed.
TUESDAY
I woke up 4.40am when alarm clock got really tired of ringing for 20 minutes. I was late so wake Zarrar up and make his Saher(breakfast). After he left to work I make my prayer and get ready to get busy to send kids to school. Khansa was up and very happy. Make her ready then wake Abeerah up. She was in deep sleep and she did not like to be up and cry when I. Cary her to the bath room. Make her ready, pack lunches and feed them breakfast. About 2 minutes before their bus arrival when I was putting jackets on them, there was a smell of need diaper change. It was khan's diaper and Abeerah was fine but when i was putting Abeerah on the bus i felt she needs a diaper change also so i went in the house and bring the diaper to change when I saw Abeerah had her head on her shoulder looking toward khans, when I try to move her face it was stuck. It just break me. It happen lot to khans but with Abeerah it was first time she lock her head. I rub back of her neck, Make it warm then bring her head straight and then move sideways. I change her diaper and say bye to them. But could not get over the pain I experienced. Poor girls. Aafter wake Zahra up and there was a same old loud crying. Her bus gave me 5 more minute in her pick up and I am happy that I have more time to make Zahra ready and I can do her morning things calmly than rushing. But other hand more crying to listen. She left with big smile when she sees her bus. Then it was Bilal turn. And he is much better and happier going to school now than before. After every one left, should see my house looks like some storm pass by. Clean up and take care Ammar. Then I got call from Zahra school nurse to pick her up if I can because she is coughing. And could not able to do so because i have plan for grocery shopping and i have nothing at home. So they said they will keep her if it don't get worst. I went shopping but have to run back for Bilal's bus was coming. I make it to the last minute. Bring groceries in. Then girls came back. Zahra was fine to me but she do have cough but very little. She was not happy and be cranky rest of the day. I sat with Abeerah and sing to her. It is so heart breaking to see in your child's eyes and knowing you are losing them. I do not want to get too close to them because then I cannot go on in this but we are the only thing they got to get loved and hugged from. I guess we love them more as days pass. Make dinner, feed girls and rest and put them to bed. Abeerah and khansa was sleepy but Zahra stayed up late.
Saturday, October 23, 2004 6:36 AM CDT
TUESDAY
Ammar had much better sleep than the other nights. Abeerah slept only three hours. After girls and bilal went to school i want to write some bills so i went on computer while i was writting bills, Khansa's school call and tell me that khnasa have 101 fever and I have to pick her up. I make Ammar ready, I did not want to go any where because it was really cold outside and Ammar not all better yet. Drove to the school While driving to Clifton I was thinking now I have to coming this way a lot or stay home most the time because kids get lots of sickness through out winter. Pick up khansa. Meet miss Najla she is khansa one on one. I love her she is very nice lady and working with khansa since two years. And i meet Khansa Teacher she came back after having a baby and her OT teacher in the hall way. Khansa was feeling warm so i came home and put her more warm clothes on, Give her medication. Bilal came and he had runny nose. Zahra cme she was very quite, not like her self at all so i feel she is getting sick. so was Abeerah. So rest of the day was very much taking care cranky kids. By night all of them feel sick, Caughing and sneezing. And they all want my attention. Lili came and help me clean up the house. Big help. Thank you Lili. Make Iftar and Dinner and feed every one. Give all of them medication and put them to bed. It feels like it is going to be a busy night and no one going to school tomorrow.
WEDNESDAY
All the kids have fever and runny nose. Khansa and Ammar was coughing all night long. Most the night I was checking each of them and tucking them in to their blankets. Winter is not a happy time in our house. We do not have insulation in the our house. It is an old house and to keep the house warm, i have to keep the heat very high and which end up huge gas bills 7o'clock i call all the buses that no one going to school today. Khansa was already up. I gave her medication and I bring her on my bed where bilal and zahra was already sleeping. I make room for her but she did not want to lay down. I was so falling a sleep but khansa wants to play. I took her in toy room and let her play with the toys and lay down on the floor where she was playing. After hour later Zaire came there looking for me and then Bilal. Bilal was not happy for not going to school. I put everyone warm clothes and socks on. Took every one back to my room and put Barney on and lay down with them. Little bit later I heard Abeerah's noise so I have to be up on my feet because Abeerah do not like to be sick and alone. I took every one downstairs and feed them breakfast. I read stories to Bilal while every one watch TV. I have to clean their nose time to time one after other. By the afternoon I start sneezing my self. I hate to be sick with them because they have no one else but me. Ammar was very active today and he play around. He was much better than others. I make Iftar and dinner. Later girls have some soup. Give evry one's medications and make them ready to bed. Khansa and Zahra still have fever but Abeerah have bad runny nose. Bilal look better. Ammar have some cough time to time but i was really feeling sick my self so I have to have some sleep. I hope every thing goes OK tonight.
THURSDAY
I woke up 4.30am. Feel sick but not too bad. wake Zarrar and went in the kitchen so he eat before he go to work. After he left, check on the kids. Abeerah, Khansa and zahra all feel hot, but bilal looks better. I call the girls buses for not to come. Wake Bilal up and make him ready for school. He was happy, chating and telling me about his dream. I was happy to see him like that because yesterday he was very slow. After he left, I sleep for hour with Zahra who was in my bed. After taking care the girls morning needs(brushing their teeth, Diapper change, dress them clean clothes, bring them downstairs and give them breakfast medications). Put Barney on for them, Take care Amman's needs. He watch TV with his sisters but through the safety gate because Abeerah love to bite his hands. Whenever she see him she just want to eat him up. I don't blame her because I want to do the same (He is so sweet). Abeerah also having lots of falls, she stand and fall. She love to jump but not for too long (poor girl). In school she wear braces so her feet don't turn inward and keep her walking as far she can. I am thinking to order braces for home also. Aftera all I did some cleaning and took a blanket wrap my self and sit where girls was watching TV because I was sneezing and feel whole body was breaking up. But did not sit for too long because Zahra keep taking her clothes off includ diaper and her temperature was kind of high. So I have to hold her but that don't work either because she is very hyper and nonstop moving girl. girls have drinks and snakes time to time. Lili came to wash the clothes. since she start coming i am so relax. Making a time to wash the mountain of clothes is really hard for me and then they keep sitting there for me to fold and iron. After Bilal came home, I take care of him. I do not want to cook today so I order PIZZA which every one's favorite food. Feed every one, give very ones medication and make them ready to bed. Help Bilal with his homwork. Every one look very sleepy but Zahra so she watch Barney till late night then fell a sleep.
FRIDAY
Abeerah and khansa was up at 5am very active but cough and runny nose was still there so i did not want to send them to school because i do not like to go and get them from hour drive if school decide to send them home. Zahra still have a fever. I took care the girls Abeerah khansa's needs. Put video tape on for them. Send Bilal to school. Then took care of Zahra and Ammar. Zahra was still hot. I gave her medication and rest of the day just being a mother to sick children. By evening make Iftar and then make Dinner. After feeding them, i make them ready to bed but Abeerah looks not sleepy. So I let them stay downstairs for little bit longer. Later put them to bed. Clean the kitchen then put zahra, Ammar and bilal top sleep. I spend some time on computer to do some searching. then I went to bed.
Please remember my family in your prayers.
Don't forget to sign in our gest book to let us know you stop by. It means a lot to us.. Tayyaba.
Wednesday, October 20, 2004 12:00 AM CDT
SUNDAY
Way too busy day....Ammar is still burning hot and start coughing too. With tylanol he feels little better for while. I did not like the sound of his cough. There is no DR on Sunday so I have to wait till tomorrow. He do not let me do any thing and wants to stay in my arms. Bilal Had his first faste. He is only five and this make me so proud of him . I did not thought he will keep it for whole day but he did and he was very exited.
Abeerah jump a lot and she is not stable in standing so keep falling on the carpet but does not stop there and get up and start jumping again with lot of noise. She eat well today and keep chewing her hand a lot.
Khansa was happy today. She did not eat much and push most of the food out of her mouth after chewing. She have lots of drinks. she have no problem drinking in her sippy cup. I can give her BOOST but I was out of it. Make lots of mess with food. Zahra was cranky and keep messing thing arround the house. She watch lots of Barney and Bear in a big blue house. Due to Ammar being sick I cannot keep up with her. Good thing is less fights today between bilal and zahra today because Bilal stay with his father most of the day. And Zahra have no one to mess with. Afternoon Ammar went to sleep and i took girls and bilal out in the back yard to play with the leaves. some sweings and some jumping on tramplain. I had some fun taking the pictures. Ramadan is a very busy time. Making Sahara, Iftars and Dinner then Trawies. Very tired by the night. My arms hurting so much holding Ammar all day. I hope they all sleep through out the night.
MONDAY after Abeerah, Khansa, Zahra and Bilal went to school, I just want to go to sleep because I have very little broken sleep last night due to Ammar was crying and he have hard time breathing. It sound like he got infection in his throat. But I have to take Ammar to the DR so I call and make appointment with DR Tantawi. Dress Ammar and get ready. I hate all the wait in the waiting room. DR check Ammar and he do have infection. Got prescription and head to pharmacy. Came home pick up Bilal and went to the library to return bilal's books and get him some new to read. Pick up medication form the pharmacy and came home. Clean the house. Girls came one after other. Took shoes and jackets off, Change diapers, Make them comfortable, Feed them, then make Iftar and dinner. Ammar feel little better by the night. I hope he sleep tonight. Put kids to bed and went to sleep.
Wednesday, October 13, 2004 12:33 AM CDT
Sunday
What a day...Took my heart out....Friend of mine call that she is coming over today. She did not visit us for long time. Actually I have book of her that my sister send me to give it to her. She have two daughters and I was happy that bilal could play with them and i have some compny. I start the day with giving every one a bath. Then I give every one breakfast after I clean the whole house. I did not had a milk so I was upset that guest are coming and there is no milk to make tea or coffee.. I have to have the milk. so i put all the kids in the van, bought the milk but coming home Bilal want to get some donuts so I drove to dunkin donuts and took Bilal and zahra with me inside and get some donuts. Zahra pick up a straw when we were coming out. She start chewing it. when we reach home and I was taking the girls out from the van and put them in the house Bilal wrote his name with marker on the front door. After girls get settle down I get back to bilal for clean I it up and mean time zahra drop the strw and Ammar pick it up. I was helping bilal when i saw Ammar walking to me with chewed sharp edges straw and I just thought to take the straw from him but before I took a step he fell right on straw in his hand. I ran and pick him up but it was too late. His whole eyebrow got a big long deep cut. Too much blood and so much of my tears. I can take any thing but blood. Thank God his eye is all right and did not get any stitches. My poor baby. Right then my friend call and I told her not to come today because I have to take Ammar to the hospital. Rest of my day putting bandages and taking care of him. Plus 4 kids diaper changing, feeding, and bilal's homework.
Monday
Girls have no school and bilal do not want to go to school for half day. All the kids lie down on my bed and snuggle and watch Barney. But khansa and Abeerah cannot sit still so they walk to the hallway and keep walking in the hall way till Zahra finish her Barney tape. Little while later we all went downstairs after brushing every ones teeth. I put Barney downstairs TV for Zahra and she watch non stop baney and jumping while watching all day long. She keep taking some snakes while watching TV and Abeerah and Khans join her Barney and snakes with little screams. Zahra Really love her sisters and time to time give them hug and sing it to them I love you, you love me. Most the time on day off we go to park to feed ducks but now weather got cold and cold is bad for the girls because they get sick quickly so we have to stay home. I keep cleaning where ever zahra keep making mess And keep putting her clothes back on her that she undressing her self include her diaper. She also opening the door for her sisters to come out from their room and go wild in living area or in the kitchen. Abeerah drop every thing and chew any thing she find. I Cook big dinner and feed every one. After putting them to bed, I clean the kitchen and make clothes ready for school tomorrow. Then I went to bed but Zahra did not want to sleep. She keep me up late and keep crying every time I turn the TV off. Finally at 1.30am she fell a sleep.
Tuesday.
Wake up 6.00 and start my day making Abeerah and khansa ready for school. Khansa was already up she gets up really early between 4.00 to 5.00 even if she slept only one hour. That is her fix routain. She just sit on her bed and watch the birds on the tree closer to her window or she start banging the window . I wait for alarm clock to tell me when I have to start my day. Always make khansa ready first so Abeerah can have couple of more minute to sleep if she is sleeping. After brushing their teeth (witch is a fun time for them because they get to bite my fingers and i screams that make them laugh) I change their clothes and put shoes on them, feed them breakfast and make their lunch and put them on the bus. Their bus comes at 7.10am and that time is still dark out side. Then I wake Zahra up. She is the one really give me hard time because she do not like to get up and cry with top of her voice. She do not like me to do any thing with her. I put shirt on she take it off, I put one shoes on and she take it off while i am putting other one, i put jacket on, she take it off. And she is screaming the whole time. She really test my patients in the morning. Any thing I make for her breakfast she threw it on the floor. Only thing she like in the morning is chocolate milk. I make her lunch then her bus arrives. As soon as she see her bus, she smile and walk to the bus her self. Finally she stop taking Barney with her. Her bus comes at 7.30am. Then i wake bilal up and he is another story making him ready. His bus comes at 8.30am. After he left I take care Ammar. Play with him. Feed him and clean the house. And do some shopping for bread and milk. I should have some rest while they are in school because my day is busy after kids come back but time fly so fast. At 2.30pm bilal come back first then zahra and then Abeerah and Khansa's bus comes. Girls diaper need to be changed as soon as they arrive. After they settle them down Give them snake and some drinks. First thing is turn on when zahra come home is Barney. I wish there is a Barney tape can run for 24 hours or run over and over it self because as soon as tape finish and zahar start pulling me towaerd tv. If tv is not on then Zahra will be up to something. She love to eat and keep asking for snakes. She loves popcorn. I took bilal to Quran class which is a minuet of walk. Then I pick him up after hour. I feed all the kids and make bilal ready for his karate class. I was making girls ready to drop bilal off then my brother in law call that he is coming to drop something off so I ask him if he can take Bilal with him so he did and save me from some work. Zarrar pick bilal up from karate coming from work. After they came home. We have dinner and make kids ready to bed. I hope they all sleep through the night.
Wednesday
Same routine like every day. But easier because Abeerah been doing good last couple of days. Like her normal days. She is not crying much. Walking little better. She is sleeping through the night last couple of days. On weekends I let her sleep but school days I feel bad to wake her up because she sleeping so peacefully and when I wake her she do not look happy and start making unhappy noise. Khans Also been better but with very less sleep. She is not crying but she is not happy either. Zahra been really too much to handle like always. It is not easy to raise a normal kid with three handicap children. Bilal need lots of my attention and i try my best to give him time but my time is so much involve Changing 4 kids diapers every other hour. And feedings and specially cleanings. Bilal go to Quran class and take Karate lessons. He start receiving homework from school also. He love books so we go to library to get 14 books a week. He want to read two books a day. And I have to keep it up with all these things. I also taking care of Ammar. He is great. He is easy to handle and so cute. Some time I don't even know that he is there. We are blessed to have him. Zarrar go to work from 4.30 in the morning till 8.00pm. When he come home he is really tired. He eat his dinner and ready to go to sleep. I drop my Van at the shop to fix it because water pump is broken and no heat in the van. Girls cannot stand hot or cold. They can't say in words but they use screams to let me know they are not comfortable. I hope Auto shop can repair it faster than they said taking three days.
THUSDAY.
I got a call last night that my van is ready and all the work have done. So after girls went to school i went with my friend and took my van. I want to thank Mr Soori for fixing it fast. I drove it to my friend house to try if every thing is working fine. After little bit staying there i came back home. Clean the house. Receive kids from buses and rest of the day busy taking care each ones needs.
FRIDAY
We did not faste because no one could site the moon last night. After sending kids to school Me and zarrar went to his siter house for a little bit. Came home and do some cleaning then my mother in law came over. when she was leaving kids buses start coming and i got busy taking care of them. Zahar came home crying and she cry rest of the day. Nothing helps her even barney could not do any thing for her. Ammar was also very cranky this morning and got fever after noon. He was burning hot rest of the day and just want to stay in my arms. Kind of hard taking care rest of them when he is in my arms.I want to keep him away from girls because they catch any thing any one have fast. I don't have any one who could hold him a minute. Tylanol every 4 houres help him little bit. But by night he was turn really hot again. Zahra stop crying by night but she was not happy at all. Put kid to bed but i don't have any sleep all night holding Ammar who cry most of the night. I have to make a Sahar in the morning and i feel really tired.
HAPPY RAMDAN MUBARAK. I pary for lots of blessing for every one.
Friday, October8, 2004 12:14 AM CDT
Last whole week been really hard because Abeerah And Khansa both crying a lot. Khansa been very calm and she been sleeping through the night but since last week she is crying a lot. she crying most of the night. I don't see any thing bothering them. They both having a moods swings. They are happy one minutes and other minute one of them crying with tears and I cannot understand what is wrong. Some times they both start crying together and then Zahra and Ammar join in and on top Bilal start screaming why they crying, he cannot hear any thing. At that time I could do best is cry with them but they all looking up to me so I have to care for each one. I give them a warm bath which really helps. Holding and rocking them helps. Feeding them always help. So now they are on several small snakes and three times proper food plus lot of drinks in between. I call the Dr. Tantawi and she change their medication that I have to pick it up from the pharmacy. I hope it works longer because with their system medication only good for a while after that medication stop working and we have to change it. I don't like to use much of medications.
I really have to make time to sew for girls special clothes like overalls but zipper in the back because they always taking their clothes off. Abeerah put her hands in her diaper and make a mess. I put overalls on her but she manage to go from the sides. My specials clothes are big help for me and very comfortable for them. All the old ones i sew they are grown out of them. Girls are growing fast. Some of other parents of disable children ask me to make it for their kids also but time is the key that I don't have.
Weekend is here. And girls are off from school on Monday also for Columbus Day. That means three busy days and no rest.
I want to thank Laurie Ciulla for her visit and all of her support. She is Zahra's old speech therapist. She and her Mom are Amazing peoples. We need all of your prayers and support to go on in this struggle. Thank you Tayyaba. --------------------------------------------------------------------
Lots of people wants to know the girls current situation.
ABEERAH
Abeerah is not feeling too good lately. She cry a lot and make lot of non stop crying noise and some times screaming and start jumping. I try every thing but can not figure out what is wrong with her. She stops for while when her stomach is full. She love to eat frequently. She do not sleep much. One day she sleep good and other day she will jump and screams all night long. Feeding and diaper changing is a big exercise for me. She like to jump and try to run while i am changing her diaper. Feeding time she keep taking food out from her mouth with both of her hands and play with food. School have a good equipment for her, with that she can not bend her arms while eating. I also order it for home and can't wait to receive it. With that feeding will be much easier. She put every thing in her mouth and try to chew wood on windows or any other area where she can put her mouth on. She cannot stand her on first thing in the morning. She also having a problem walking. She walk slow and have lots of falls. Her feet are moving toward in and also have pain in her hip bone. One day she will lie down all day and other day she will jump around and don't even like to sit down. In the morning i have to carry her to bus because she do not like to wlak. I took all the toys out of her room because one she put every thing in her mouth and drool a lot and second she trip over on any small thing in her way and get hurt. Her Looks been so much changed since last year. She always smiles when some body give her hug.
KHANSA.
Khansa is very sweet. She had some notice able changing in her since last month. She start hitting her head with her hand a lot. She don't eat much. she chew and chew then push the food out from her mouth. she love to drink. she sleep threw out the night unless Abeerah start screaming middle of the night in their room then she wake up and hard to go back to sleep. Lot of time I have to take Abeerah out of the room so khansa can keep sleeping. She gets up early arround 5am and start making noise. She go threw lots of wet diapers a day. She start crying all of sudden with tears and then second minute she laughing out loud. She chew on every thing. She love Barney and love some body talk to her. Her favorite thing is grab some body's ears and play with it.
ZAHRA
Zahra is way too much to handle. She is very active or can say very hyper girl. She still have all the abilities. She lost most of her speech. Just a couple of words left that she still use. That will be "No, Barney, Bye, Baby, Mama, doing. She can open any door any lock so nothing is safe from her. She runs the house basically. She can dress her self specially undress her self a lot. She put socks and shoes her self. She take attention by beating the person up with her hand and boy her hand is really heavy. She can make you get what she wants. She love to run on the street that's is why we have locks on our fence doors but some time she manage to open that too. She do not sleep till every one fall a sleep and do not like to be waken her up. She wants to wake up her on other wise she will cry out loud at least two hours. Barney is her favorite show and she will not let any one talk till her Barney is on. She loves hugs, singing to her, go out, go to parks, love books and playing with toys. She have some hearing loss.
Bilal have a heart murmur and Ammar doing fine.
My day is extreamly busy keeping up with every thing espacially giving time to 5 yr old boy. Some thing always happening here. If there is nothing then Zahra find some way to make me busy. Like peanut butter painting or katchup painting or take her daipper off and make a mess. Some time all the girls have paper eating contest thank to Zahra who gave them newspaper or some book to eat. Some time Zahra feel bad for her sisters and let them go in the kitchen and open the refrigrater door for them so they can help them selves. That day will be my big time kitchen cleaning day. In other words every day is some thing cleaning day here. These girls keep us busy.
monday, September 27, 2004 12:00 PM CDT
SUNDAY
Very hard day today. First thing in the morning I went online and want to know how little Jordan doing and find the bad news that his heart stopped and he is gone to heaven. That break my heart. It must be really hard for the parents. You can read what his parents wrote in his journal. http://caringbridge.org/il/jordan/index.htm
Then i wake the kids up and took care of their morning stuff one by one. i promise Bilal for going to the park today so after breakfast i start making the girls ready, changing their clothes shoes and diaper stuff. Making the kids ready always take me atlas 2 hours. Bilal was calling me upstairs to make him ready and when I return it was a disaster in the TV room. Zahra went in the kitchen (We have child doors every where but no child locks work for her) and got big jar of peanut butter, open it and gave in to her sisters hand. All 3 girls, Ammar, TV, Carpet and sofa was covered with peanut butter. It looks like room took a shower with peanut butter. I hold my head thinking where should I start cleaning this. First I put movie for Bilal because he got upset for not going out then put Barney for girls so they stay busy watching than spreading it more. Then give Ammar a bath in the kitchen sink. Took the girls upsetter and give all three bath. I don't understand how come peanut butter reach to their hairand every part of body and clothes. After giving them bath and putting clothes on them, I put them in my bed room and start cleaning TV room which is right now peanut butter room. I scrub and scrub. I know peanut butter taste really good but not easy to clean it. it took me some times and that was pass abeerah's snack hour and she ready to bite every one. when i reach upstairs to get her she was trying to eat Zahra but zahra still defend her self and she was keep moving while watching Barney. In this whole time bilal keep asking time to time," are we going, when we going" So even i tired but have to go see the ducks because promise is promise. So I pack every one in the van and went to the park but guess what our favorite spot is full. I call it favorite for bilal but truth is that is the place I can handle it all by parking it couple of step away. So we drive around but people were still there so we went to get something to eat because Abeerah was getting hungry again. i could not find any store that i could get what we can eat so i went to dunkun donuts and buy some muffins and some drinks, feed them in the van and drove to the park. Thank God....Place was empty, I change some diaper in the van and took the girls out. Zahra was sleepy and woke up but very cranky and i have hard time to handle her. She keep running to the parking lot. Any way Bilal feed the ducks and girls had fun watching them. After we all had enough I put them back in the van and drove back. Drop Bilal off at grand mother house, Bought some chicken and other food. AC was not working in the car so all of them start screaming. Girls cannot take heat and screams. MONDAY
Sorry of late update. I been really busy. All the kids slept well at night. After every one left to school and zarrar went to fix his car I want to go to see my neighbor Mrs. James, she is an old lady and just came back from the hospital. First I went to get some goodies for her, mean time Zarrar came back after dropping his car to the shop, so we both went to see her. Zarrar left to rent a car to go back to work but I spend some time with Mrs. James. When i came back i was behind schedule and so much to do at home, cleaning, making beds and stuff ready for girls before girls come back. Zarrar came back with his friends who gave him ride to get to the car. I made some coffee and stuff for them and could not finish the work even trying to do fast. Bilal came back and girls also return. Zarra help me get them from bus. Abeerah and khansa bus driver wasn't giving them to Zarrar so I went and told them he is the father. Zahra was in her bad mood. first thing she took all of her clothes include her diaper and i put it back on but she took it off again and i put it back again. i went to make bilal ready for his class while girls watching Barney (I hate upstairs stuff because always some happen behind me) but when I came back zahra have no clothes on. Mean time bells keep ringing and I left to open the door. It was my mother in law and my sister in law when I came back there was a big mess. (you don't want to know what kind a mess) it took me hour to clean and my mother in law hold Ammar while I clean up. Bilal was late for his class so I ran to drop him off. Came back feed every one and made tea and stuff for guest. Then went to get Bilal. when return zarrar was on the floor cleaning up and my mother in law putting zahra diaper and clothes. There was lot of water in the dinning room floor. we have a room fix for girls with a child safety door but zahra can open any door any lock so she keep letting her sisters out and they drop every thing and put any thing in their mouth they can find. I guess today was zahra's day. My brother in law came with his wife and kids. Stay for little while after they left I feed the girls and put them to bed. Then went with bilal to get some school snacks and cleaning items from store while zarrar watch Ammar. Came back put boys to sleep and went to bed.
TUESDAY
I was very tired this morning. I have only 4 hour sleep last night. Today is Abeerah and khansa's picture day. I gave them bath and make their hair so they look nice for their picture. After kids left, i feed Ammar and I felt I will fall down so I went to lie down and Ammar lie down with me and we slept for 3 hours. I have a good news. I find a cleaning lady (Evalane) today and I took a deep breath for that. My Mountain of clothes that I washed she put it away and house look clean. She clean girls room. I cook in that time. All the girls look happy today and so am I because I have some help today and I rest today. I drop bilal for karatay while Evalne watch rest of them. That felt so easy. After I came back she left. I feed the girls and put them to bed after brushing their teeth. Zarrar pick up Bilal coming home. We all had dinner. I made some calls and went to bed.
Sunday, September 26, 2004 12.00 AM CDT
SUNDAY
Jordan's little heart stopped working...he went home to heaven. Please send your Sympathy. Caringbridge.org/il/jordan/index.htm
SATURDAY
Abeerah did not sleep last night again and she was very happy and laughing a lot. At 4-am she lie down and slept a little but she was up early at 7-am. Zarrar was home today which make my day very happy. we had coffee together and then he left with bilal to get hair cut finally. He did not have any time since few weeks working saturday and sometimes sundays too and by the time he comes home every thing is closed. My mother in law visit while i was feeding girls breakfast. We had tea together and have some talk. then bilal and zarrar came back and both looks good with new hair cut. Zarrar and his mom went in the garden to pick some vegetables. so many eggplants and peppers. It is good to have fresh vegetables. I made lunch and zarrar get ready to go to the funeral. Girls watch all the Barney tapes and looks happy. After the dinner, diapper changing and brushing their teeth i put them to bed. I went online and read about Jordan loosing his battle of life made me really sad. Zarrar came back, Eat some Mangoes and went to bed. He is working on sunday that mean early wake up for him but for me there is no school on sunday
FRIDAY
Abeerah slept good last night so and i. woke up 6am and i was late for my scadual. I rushed and rushed making them ready fast but Abeerah & khansa's bus came and they did not had breakfast yet and lunch was not ready either so i told the driver that i will drop them off. After Zahra and Bilal left to school. I made their luch box ready. Feed them breakfast and Make Ammar ready and drove to clifton which is from my home to school steps is 35 -40 minut drive. I hate going there. Drop them off. Meet miss Najla, she is Khans's one to one and working with her past three years. I love her and khansa really smile to see her. Came home and did all the same thing like every day. Girls were very happy when they came home and they watch Barney . That makes them laugh and jump. Zarrar came home late stoping at Roy's house. He lost his Mom 2 days ago. Abeerah did not sleep till 12pm and keep jumping on her bed. Thank God tomorrow is saturday. Saturday is very busy than other days but atleast i don't have to rush in the morning.
THURSDAY
Abeerah was not feeling good and she did not have any sleep all night so i kept her home. Made khansa ready for school. She is very easy to get ready means she doesn't struggle while i am changing diaper and brushing her teeth but she start walking when i am puting shoes on her and making her hair done so walk with her and keep doing her hair. She is very sweet and always smiling and love hugs. Love to drink milk in the morning but don't like to eat much that is why she is so thin. Then i have to listen to Morning crying and screams of zahra who do not like to get up and do not like to get ready so there is a big struggle and need lots of patience She don't like to eat in the morning but eat rest of the day non stop. Actually she live in the kitchen after come from school. She loves me and cannot stand any one come closer to me. Bilal is another story to get ready for school. He don't want to wear this or that and takes time in every thing even I am helping him in every thing. But he is cute in his way. After every one left. I took care of Abeerah and bring her downstairs. She looks OK but very hyper. Bibi came with so many gifts for girls. She play for minute with Abeerah. Thank you bibi for Every thing. We love you and really appreciate your help. Ammar wake up and I got busy with him. Then I wash some clothes. But the mountain of clothes still looks the same. Kids get dirty so much and use so many clothes a day. I still did not find any one to help me and cleaning work take so much of my energy. Rest of the day very busy taking care Abeerah, Ammar and then receiving kids from buses coming back from school, taking care of every ones needs, took bilal to class then pick him up, make him ready for karate and every one else ready, put every one in the van, seat belts. drop bilal off at karate, Zarrar usually pick him up coming home but he call and said too much traffic in NY because of UNO meeting so he can not make it on time. So i stay in the car and did some shopping for some food items while bilal was in class, change some diapers in the van, then Pick bilal up from karate and reach home. taking every one inside one by one, taking their shoes off, cook and feed every one, make them ready to bed. Abeerah look sleepy and look much better from afternoon and I hope she will sleep tonight. Then zarrar came home at 9.30pm. he looks so tired and he was falling a sleep. I went to put zahra to sleep because she wants me to lie down with her and by the time I came back Zarrar was already sleeping on the sofa and did not move rest of the night. Poor guy did not even eat his dinner. Then i clean the kitchen and pick every one's clothes for school. i was really tired so went to bed.
wednesday, September 22, 2004 12:00 AM CDT
WEDNESDAY
Zarrar leaves to work at 5am so he gets up 4.30am to get ready. He is a busy man. well my day is not less busy. After kids left i saw Zahra's lunch box left home and She will go crazy without any thing in her stomach. I call the school to feed her something from school but they told me they don't have cafeteria and have nothing to feed her. So I have to go all the way to Drop her lunch. When I was out I did some food shopping. Came home and clean the house. Kids start coming home from 2.30pm. Abeerah did not look happy when she came home. Then the same rotain rest of the evening. After put Abeerah and khansa to bed. Bilal play with his toys and Zahra watch Tv. Ammar love to watch TV with Zahra. Zarrar call arrond 8pm when I was waiting for him to be home that his friend's Mom passed away so he will be going to his house. Sorry Mr. ROY on your Mother's lose. Zarrar came home around 10pm and ready to eat when we heard Abeerah's screams and we ran to her room. zarrar held her for while. We both just guessing what is wrong with her. After zarrar went to sleep I have to hold her. Gave her Tylenol. Her hips are giving her pain. And it could be her teeth. Dentist said on her last visit that she having her permanent teeth. Could be they giving her pains coming out. After while she comedown but did not slept all night. Please pray for her.
TUESDAY
Morning was busy. Like every day rushing and making the kids ready. First Abeerah and khansa's bus comes then zahra's and then bilal's. Zahra had an early dismissed due to her school having a back to school night. So she came home 1pm. Me and zarrar decided to attend Zahra's back to school night because I did not met any of Zahra's teachers and therapist yet. So i start working on finding a baby sitter for tonight to go to back to school night. I could not find any one to baby sit for my girls. Then last I call my Mother in law. She is very sweet. Every time I need help she comes. She cannot do much but she watch the girls to not get hurt. I get ready and take care the girls, change their diapers and feed them and stuff so my mother in law don't have to do much. as soon as Zarrar came home we left to Shaler in Rigfield. We were little late but we met every one, Teacher Stacey and Ida-marie. They were very nice. They told us all about their schedules and how is Zahra doing in class. Zahra's favorite teacher assistant miss Petty and other assistants miss Karen. We had a wonderful time. Every one work really hard to decorate the room. Kids made so many arts. Zahra's pictures were on the walls. It was getting late so we came home and coming back I was relax to know the staff and happy that Zahra is in good hands.
Special thanks to my mother in law who let this happen.
MONDAY
Kids back to school after 4 days off from school. And the best thing happen...BILAL went in the school bus. HURRYYYYYYY. I am so glad and Thank full that Teaneck board of education decided to provide bus for bilal. I asked and write them but denied to get a bus for bilal. It was really difficult for me to drop him off while I have to wait for bus for abeerah khansa and then zahra's bus. it was not possible when Abeerah or any of them sick and stay home. I was really worried that I won't be able to drop him at school regularly. I want to thank Husna Sheriff who wrote a letter and make 10 other people write a letter to Board of Education. Thank you Husna for being the best friend and helping me so much. May ALLAH give you the best husband in the world And give you lots of happiness.
I don't know who other 10 peoples are but I really want to thank them also. May Allah reward you for this help.
I want to thank to BIbi Muhammad. She help us with diapers supply last year. And she visit us with her two beautiful daughters couple of days ago. She also spoke to councilor to provide bus for bilal to school. Thank you Bibi.You are the most wonderful person. Who touch my hearts. May Allah give you happiness.
I don't know what worked but I am happy and relax. And so is Bilal who love to ride in the bus.
SUNDAY
MAKE-A-WISH Picnic. Sunday We all were invited to Make-A-Wish picnic. I spend hours cleaning an old stroller night before for Abeerah because she don't like to walk much. Bilal was very exited to go to picnic. It tooks me 2 hours to make every one ready. Zarrar went with her sister in the morning. When he came back we put the kids in the van to go. Park was about one hour drive. Place was really crowded. We did not know any one there. But it was sad to see so many kids with different disabilities. I don't know how we handle it all but Kids enjoy the out door specially bilal and zahra had a lots of fun. They went on moon walk, swings and slides. Bilal loved the clowns there. He climbed on the over sized truck and made an art with colorful sand. There was food available but due to khansa and zahra not in stroller so i could not use two hands to feed them. We all had ice cream. It was really hard to move abeerah's chair because of very old and rusti. It was really slow and makes every one move slow. When we where coming back zahra disappear all of sudden. Zarrar spotted her green shirt on the main door and caught her before running in to the parking lot. I think it is time to get good three wheel cahirs. We all had good time. Bilal said he loved the picnic.
Tayyaba.
Don't forget to see new pictures at the picnic.
Thursday, September 16, 2004 11:31 AM CDT
I am sorry for not updating on the girls situation for while due to very busy. Lots of people been asking to write an update how the girls doing but i did not had any time. Now the girls went back to school and Zahra and Bilal also start school so i decide to write.
Abeerah(7yrs) do not like to stand or walk in the morning. It take her while till she can stand her own. Last week was dental visit. Her teeth giving her lots of pains. Also her hips in pain. She likes to lie down most of the day. Can not stand quickly. she screems a lot. And make lots of noise. She loves to eat. And have sleeping diorder.
Khansa (6yrs) doing good. Happy like always. Love to go for walk. Don't like to eat much. she laugh a lot and some time cry with tears. she is doing good.
Zahra (3 1/2yrs) start full time schoo and loving her school. She gives me really hard time to get ready for school in the morning but as soon as she sees her bus... she grab her book bag with a big smile and walk to the bus. she looks really cute going to school. After school she is really a hands full. Can not sit down when she is home. She loves watching barney.
Bilal also start kindergarden.
Making four kids ready for school is lots of work. My day start at 5.30 am. Making kids ready start from waking them up, wash their face, brush their teeth, change diappers, change clothes, put shoes on. feeding them break fast, making their lunch ready, and after girls leaves to school, drop bilal off at school in the class room. Then i come back and clean the house, make food ready. Pick bilal up from school and then girls come home one after other and rest of the day is very busy changing diappers, feeding and cleaning include taking bilal for Quran class and kratay. Zarrar come home 8pm. Then putting kids to bed. cleaning the kitchen. Its goes on till 12 at night. I need some rest now so good night. Tayyaba.
Don't forget to see new pictures.
Tuesday, June 1, 2003 2:49 AM CDT
Special Report In Octobr of 2002 Tayyaba informed Washington South (the out of district school Abeerah and Khansa attended in Paramus, NJ) that she was taking our daughters with her to visit her family in Pakistan because of the untimely death of her father, she was directed to notify the Teaneck board of education of our situation, which she did, from the principals office. Much to our dismay we found that their school had dropped our daughters from their roster and now refuses them re-admission on the grounds that they are not suitable for their program (as told to us by our case manager) It is now 110 days since Dec 12th 2002 (the date of Tayyaba's return and notification to the Teaneck special education department. TheTeaneck Board of Education has failed to place our daughters in an appropriate school or provide in home instuction, within 30 days as per NJ state law. (more info is in past journal entries)
Monday, March 31, 2003
Please Forgive the delay in updating the journal. I have not been well due to stress and a persistant head ache.
Although the folks at the Teaneck board of ed are looking more active it looks as though we are not their first priority.
My letter to the board of ed was not entertained or answered by any one of them. Dr. Morris never responded to my letter to him. I met with one of the Teaneck council members and I await any response from him. Thursday, Tayyaba and I went out to see the Hillcrest school in Paramus. NJ but it seems that this school caters to children who are higher in functionality than Abeerah or Khansa. Friday, Tayyaba went by herself to see the school in Clifton, NJ we havn't heard any thing from that visit, also one Teacher showed up on Friday to meet us and set up a program for the intrim.
Saturday got My mom and Sister along with my Uncle to the JFK international so they could catch a flight to Pakistan, to visit the family and my Dad's resting place, I am really thinking of going too.
Sunday my head was killing me so most of the day was spent in bed, trying to shake it off, .....no luck Monday had to call in sick due to the pain....went to see Dr. Farooki in Closter he prescribed some anti inflamitory stuff for the pulled tendons in the back of my neck that was causing the whole thing along with some muscle relaxers.. so I now feel good enough to write.
The Bergen Record ran it's story on the kids today, been getting phone calls. A big thank you to Bob Groves and the whole staff at the record.
Tayyaba is quite exhausted as well, our plans for the kids being watched while we go to Duke have all been shattered, due to the lack of school placement and the leaving of my mom, however we are but one story in hundreds who are facing such challanges please Visit our friends pages down at Duke and lend them your support.
Andrew - http://www.caringbridge.org/page/andrewshope Tommy - http://www.caringbridge.org/ca/bennettboys Douglas and Cameron - http://www.caringbridge.org/co/nicollbrothers Jillian - http://www.caringbridge.org/oh/jill
Tuesday, March 25, 2003
Tuesday was a long and arduous day. I returned to work today, primarily to attend a work unit meeting. I spoke with my supervisor and updated him on our situation. My annual and sick leave are all but depleted and I still have no word on weather or not I have been accepted into the “leave donor recipient program” (the program allows other government workers to donate their accumulated annual leave for my use during my planned extended leave of absence). The forms were faxed to Washington two weeks ago along with two letters from our Doctors, we are hopeful. I had to leave work to meet again with the People at the board of education; I was able to grab Dr. Morris (the superintendent of Teaneck schools) as he walked by me in the reception area, after I introduced myself to him, his first comments to me were why was it that I had not informed the district prior to removing my children from school, I was now struggling to control my anger, but realized that he was still in the dark as to my situation I asked if he had read my letter to him (hand delivered and sent certified mail with delivery conformation already returned to me). He had no knowledge of my correspondence, I asked if he would sit with me after I got my letter of planned action that Sheila Pozensky (director of special education services) had promised to have for me yesterday, to which he agreed. It became clear to me that they were now trying to claim that we had neglected to inform them of our emergency last October, and even to establish a trend of neglect by starting her letter to me by admonishing me for not keeping an appointment with her a day prior. I now have to write a letter explaining that when I said I’ll be by to pick up your letter, it did not mean that I was going to have time to meet with her or even that I wished to, at this point. I started my discussion with them advising them to not waste time working on their legal defense but to concentrate on Abeerah and Khansa’s placement and that I was holding her and her department responsible. A comes before J thus Accountability before Justification. Dr. Cifelli our case manager was still not to be seen. Mr. Donnelley conveniently forgot the conversations we had in November when he told me via telephone that the messages left with Dr. Cifelli (our case manager) were never forwarded to him and that it was a simple case of miscommunication (not that my children were going to be thrown out of school). So after my, what has become a daily ritual of verbal assault on Mr. Donnelley ( he was able to have his boss share some today). I was told that they had openings at a school in Paramus, NJ and that we were going to visit them on Thursday. Good news? We’ll have to see. I informed them that I have and will continue to peruse an emergency hearing at the state level, to keep the fire under their feet. My meeting with Dr. Morris was more for me to let him know of the incompetence of his underlings and it went quite well, he still did not have my letters and notes, but I am sure that he will, as I’ll be calling him today. I then went back to work. Met with our attorney late. Still working on the account, delay is mostly my fault. Thanx for all your help, Carmine. I am now writing this stuff, why? Sometimes I wonder, too much energy goes into it and I feel it may be an exercise in futility. Oh yeah Bob Groves from the Record called again said something about printing our story sometimes in the future like, next Monday. They came by in January took pictures spent three hours with us. I think after some calls from the folks at e-parenting magazine and others they sent Bob out to our house back on February 27th, and he spent three hours with us. What do I know? There must not have been enough of a story to warrant an article earlier. But thank you any ways.
Lastly Dina, Zahra’s social worker (and a great help to us) through the “building blocks organization” told us that she was leaving the program, and that Monday was going to be her last day. Best of luck in all your endeavors, Dina. And thanx for all your help.
Monday, March 24, 2003 5:18 AM CST
I am sorry to report that My attempts to empress upon the board of Ed their need to immediately place my children has failed I have been writingletters all weekend so please except the following copies as my journal entry for today this email was sent to all sitting menbers of the board of Education of Teaneck.
No response was received no phone calls no nothing. Sadly, litigation is my only option Subject: Why are my daughters still not in school (30 days was up long ago)
Dear Members of the Teaneck Board of education
I am taking time from my family while we bereave the passing of our beloved father Dr. Khalid Beg who was taken from us this last Tuesday. My name is Zarrar Beg and I am the father of Abeerah (6) and Khansa (5) Beg. I have thought it prudent to forward you copy of my letter to Dr. Harold Morris Superintendent of Teaneck schools. I am seeking your immediate attention in the following matter. My Father Dr. Khalid Beg moved his family to Teaneck in 1974 primarily due to the reputation of it's school system, My Brothers and sisters Naila, Hina, Karrar and Amina along with myself all were able to benefit from an education that was of exceptional caliber. Currently my nephews and nieces are also benefiting from the education that your board is entrusted to oversee. I was the beneficiary of a most loving father who did all in his power to ensure we received all that life could offer. Yet till now with the help of your lethargic and seemingly unmotivated personnel I am failing miserably in being able to provide for my children. When My wife and I were making our plans for our future I was insistent that Teaneck be the choice of our first home, although the prices of homes here were much higher than we were comfortable with, I thought of the future of my children, knowing that the Teaneck school system was where they should be. If the department of Special Education's purpose is to provide for special need children, then I would ask what was more pressing than placing my children. Where are my tax dollars being spent, where do I apply for a refund, as I have not received the bare minimum of consideration. It has been more than three (3) months since they were notified of our return from a family emergency, that we had notified them of prior to leaving, (*note* the purpose for notifying is so that we can be instructed of any ramifications of our actions) after acknowledging that they knew of our situation they chose not to inform us of the fact that my precious daughters would be thrown out of their school (in 30 days) that we had struggled so hard to find. I have been to see Dr. Morris on three separate days and have yet to succeed in meeting him. Our case manager Dr. Cifelli is MIA. Calling her department head Ms. Sheila Pozensky has in the past proven to be an exercise in futility. Mr. Donnelly the child study team coordinator has graciously met with me several times but is limited to reading of his phone call itinerary of who he has called and who he will call or who's call he might be waiting for. I am SICK and I am TIRED. GET MY GIRLS IN SCHOOL NOW. Your people are forever in meetings and busy making reports let the next meeting and report revolve around a little girl whose name is Abeerah and her little sister Named Khansa.
I await your calls My Home phone # is (201) 837-7861 My Late father's home phone where I may be found if not at home is (201) 837-2391
Call any time !
Below is a copy of my letter to Dr H. Morris I have provided for your reading.
Zarrar A. Beg 216 Manhattan Ave. Teaneck, NJ 07666 (201) 837-7861
Dr. Harold Morris Superintendent of Schools One Merrison Street Teaneck, NJ 07666
Dear Dr. Morris
I am writing to you in the matter of my daughters Abeerah & Khansa Beg both of whom are enrolled in the Teaneck special education program, under your ultimate supervision. On Wednesday, October 16th 2002 My wife informed Washington South in Paramus (where they were receiving out of district education) that due to the untimely death of her father, she would be taking Abeerah and Khansa out of the country, as they would be accompanying her while she attempted to comfort her bereaving mother, Administrators at Washington south advised her to contact her district with this information, which she did by trying to contact Ms.Pozensky, one of secretaries directed her to Dr. Cifelli, on whose answering machine was left a message. On Thursday, October 17th, 2002 Having not heard from Ms. Pozensky or Dr. Cifelli she again left a message informing Dr. Cifelli of her situation. On Friday, October 18th Still not having heard from any body from Special Ed, she boarded a plane to see her mother in Pakistan. October 18 - December 12th During her visit abroad I was getting messages from Mr. Donnelly requesting me to contact him in regards to my daughters, my attempts to contact him were met with his answering machine. This phone tag continued for about two weeks until I took of from work and called him during business hours and was finally able to talk with him, he inquired into my daughters absence from school, I reiterated our situation to him and expressed my concern that he was not aware of our prior messages to Dr. Cifelli, which he attributed to simple miscommunication on the part of the office. On December 12th My Wife returned from Pakistan, and while going through the mail discovers that our children have been unceremoniously removed from the rosters at Washington South. On December 16th She attempts but is unable to contact Mr. Donnelly; Gloria (one of the secretaries) tells her that they are aware of our situation and that she is sorrowed by the fact that we were dropped by Washington South. She calls my wife back and tells her she needs to pick up a registration package at Bryant school and register our daughters. My wife is informed by our previous case manager that she does not need to re-register as our children are already in the system. She calls over to the special Ed department and tells my wife that they will contact her. It is not until January that we are contacted by Dr. Cifelli who tells us she is "working on it" Long story short today is March 20th 2003 and I am at the end of my rope, I am obliged to inform you at this point, of what I feel is total disregard for the education of my two daughters, and the concerns of my wife and I. Not to mention the Law that mandates placement or a suitable alternative within 30 days. Sir I have spent 10 years in the public service and I take a great deal of pride in my profession and the people I serve, I must say that I and my family have not been served by your staff, if even one message from the special Ed department would have included the fact that my children were at jeopardy of being thrown out (in 30 days) of a school that we were most happy with, my wife would never have stayed the extra weeks at her mother’s request. Dr. Morris I have never met you or spoken to you in the past, and I regret that this is our first communication, I trust that you will see to it that this matter comes to a quick and prompt resolution.
I remain sincerely yours
Zarrar A. Beg 216 Manhattan Ave. Teaneck, NJ 07666
Friday, March 21, 2003
786 Tuesday was the roughest day of my life...I now can feel the pain that Tayyaba must have felt when she lost her father last October. I had schedualed an appointment with people at the board of education to see why they felt that they could actually keep my kids out of school. This had actually happened when they let Abeerah and Khansa be droppd from the roster at the School they were attending when she had to go to Pakistan to comfort her mom. I have not fully deciced weather or not to make that an issue, however I have started to bring down the hammer on all those that are responsible for not placing my daughters in school since Dec.16th 2002. We had hoped that while we were in NC we would have gotten a letter or at least a message on our answering machine, but much to our dissapointment we got neither, AMAZING (note: NJ state law mandates placement in 30 days). 3 months!!!! I just want to know what these people in the special ed. services were doing for three months, It is their job to cater to the needs of children with special needs, shouldent placing my two daughters have been their priority. I want these people to show me what was more pressing in the last three months than my daughters placement. On Tuesday while my whole world crashed around me and the multitudes of people who my father had touched steamed though my Parents house, I decided to keep my appointment, I went and put them on notice that my sole purpose in life is to hear good news from them. I asked to see the superintendant of Teaneck schools Dr. Harold Morris, but was told that he was not in, I have written to him and hand delivered the letter to the receptionist while at the same time sending him a certified letter that he should be receiving by today. I returned to speak to Mr. Donnelly (head of the child study team) to get my good news, He was only able to tell me about phone calls he was to recieve from somebody somewhere, I told him that I was deeply dissapointed in him, and that he had not fulfilled his promise of good news to me and with Dr. Cifelli (our case manager) who, if I had not actually met back in January would have been in the same category as the lochness monster or bigfoot due to her uncanny ability to never be seen or available. Mr. donnelly was told that I wanted in writing his plan for placement or provisions fortoutor that would stem off leagal action, by today 4 P.M. In the conversation Mr. Donnelly stated that he knew how I felt and that he too had children...I asked him how long would he have tolerate his children not being placed. I am thinking of starting a letter writing campaign. I'll let you all know by tomorrow if this is what we need, lets hope not. Today is Friday and I am sure that my fathers passing will be annouced at various Friday (jummah) prayer gatherings throughout the tristate area. I am anicipating a very busy weekend.
Monday, March 17, 2003 11:11 PM CST
Inna-lillahay wa ina-layhe rajayun
Will all my Brothers and all my Sisters please join us in Al Fatiah for my Beloved Father Dr. Khalid Beg who has been taken from us and back to our creator Allah Subhanahu wata ala. He had returned to Pakistan and to the very house where he was raised. Oh Allah, indeed we are yours and to you we shall return. but I have never felt as alone as I feel today. With your mercy please grant him a place in Jannah, and may I be able to even attempt to follow in his footsteps and serve you as steadfastly as he.
-AMEEN-
Sunday, March 16, 2003
Sunday
We are home and busy unpacking the van. Qasim has taken a long deserved rest over at his grandmother's house. Zahra is doing great she has returned to being her normal self , bossing everyone around and raiding the fridge for what ever she can get her hands on. Spent some time going through our mail, and phone messages. Went over to my mother's house to get some food she had made for us, where I caught my brother Karrar heading out the door to the hospital with his wife.... Contractions 5 min apart...went home sent Tayyaba.... Waited a few hours with the kids...Hamza my nephew (Karrar's son) came over and played with Bilal (our son). We got the news that at around 3 PM Karrar and Aisha were the proud parents of Shifa Maryam a beautiful healthy baby girl. ALLAHU AKBAR. So in the midst of all our challenges we got a chance to smile and celebrate some great and wonderful news.
Tayyaba and I sent some time going over our options as they pertain to the next steps we will be taking. Who will watch the kids How will I maintain my job. getting an appropriate vehicle Funding our stay in NC What to do with the house. The more we talked the more questions come up. We pray Allah guides us. AMEEN
Sunday, March 16, 2003
THURSDAY Tayyaba spent most of the day and all the night at the hospital with Zahra, (She had tubes inserted in her eardrums to help drain the fluid that had built up, her adenoids and her tonsils were also removed, This was something that was going to have to be done sooner or later regardless if we were to proceed with the transplant). Zahra was not happy, she had cried and fussed from the moment she was revived, after surgery till the time I returned from the hotel room after getting Lunch for Qasim and the kids, her eyes were puffy and red from crying making her look as though her entire head was swollen. She had pulled out her IV in the post surgery area and was continuing to try again in the recovery room. I told Tayyaba that she should take a break, and that I would stay with Zahra, shortly after she left the nurse came in and with great difficulty gave Zahra some Tylenol and some antibiotics orally. Soon after she was asleep I took a nap with her until Tayyaba got back around 9 PM which is exactly when she decided to get up, she didn’t sleep much after that due to her difficulty in breathing (a lot of mucous in her nasal passage). Jennifer (the nurse) helped Tayyaba through the night with Zahra. We would like to thank Sister Nuzhat Rehman for all she did to make our stay comfortable and particularly for making "chai" (tea) for us, we hadn’t had a cup of "chai" since we got to Durham. I left around 11:30 PM. Tried to work on making a journal entry but was out of it.
FRIDAY After Fajr I got ready to go back to the hospital, sat down in the chair next to Abeerah and found myself waking up around 8 AM so I ran out the door to see if Tayyaba needed anything or if they were going to release Zahra this morning (they had wanted to hold her over night to make sure she was maintaining adequate levels of oxygen and to monitor her in case she started to bleed). Tayyaba was already packed and told me that Dr. Hulka (the ENT) had seen her and Zahra and that she was waiting for the release forms. So I ran back to the Hotel and got Abeerah ready for her MRI at 9 AM. (Qasim was still asleep and had been a little fatigued from watching the kids, so I decided to do this all on my own) I woke Abeerah up changed her diaper washed her face brushed her teeth, combed her hair, got her shoes on (could not find socks) and got out the door by 8:45. When I got to the lobby I remembered I needed diapers so I ran back up to the room shoved two size 6 diapers in my back pocket and a handful of wipes in my jacket pocket, and off I went. Got to the MRI department and started to fill out the questionnaire about the metallic content of my body. By this time Tayyaba arrived with Zahra who looked a lot better and was happy to see Abeerah and me. Abeerah and I went in eventually where she was sedated and put through the MRI apparatus for a brain scan. We got Abeerah and Zahra back to the room around Noon, I had wanted to make my Juma at the Masjid in Raleigh but because I had given my cell phone to Tayyaba it got buried in her bag and I missed Br. Ibrahim’s call, and couldn’t find the e-mail I had with his number……..Alhumdu-lillah.
At 5:30 PM we met with Dr. Kurtzberg to go over the results of the testing, The news didn’t look good for Abeerah, the results of the MRI showed substantial damage to her brain. Khansa, we had hoped due to her continuing improvement in speech, appetite and general happy spirits, would have been a better candidate for the procedure, however Dr. Kurtzberg’s opinion is that the results of her MRI shows substantial brain deterioration as well and she would not be subjected to the rigors of the bone marrow transplant procedure. We still have hope for Khansa. It is getting dificult to write, or to think clearly when your emotions are over taking you, please bear with my ramblings. Zahra as expected showed little brain damage, however is showing signs of deterioration as far as her skeletal structure and slight hearing loss. We will be getting more information as it is compiled. We then went over the many questions we had about the actual procedure. We are hoping to be able to return in two weeks to continue in Zahra’s treatment.
I will try to give more detail as this week progresses.
SATURDAY Ibrahim and Adam came over and we went out to get breakfast, we all ate, got packed checked out, met with Ellen Bowman (who was on her way to the clinic), loaded up the van and hit the road at about 2:30 PM………with one diaper stop in Maryland…….and one gas stop in PA…….we got to Teaneck NJ ….at 10:59 pm. Alhamdulillah. Sleep time….Assalamu Alaikum.
Thursday, March 13, 2003
Have been at the hospital since 7 am for Zahra's surgery, all seems to have went well, however she is not happy she was very cranky after the surgery, she is now recovering, she is being kept overnight for observation. Tayyaba is with her I just got back (details to follow) long day need sleep. will take Abeerah for her MRI tomorrow. Insha-Allah
Wednesday, March 12, 2003
Day 11 at Duke Many have inquired as to who is Qasim? Answer: Zaccur Qasim is my oldest nephew, who lives in Massachusettes, He is my Sister Naila's oldest son, who (clear out of the blue) volunteered to help with the kids when we went to Duke, at first we were quite surprised that a 22 year old (guy)would offer his help, then we said well he can at least keep us company. Well let me tell you I don't know where we would be without Qasim's help, frankly, the notion that Tayyaba and I could have done this by ourselves is pure science fiction. My sister Naila had said "don't count Qasim short as an asset" and man that has got to be the under statement of the century, as it stands right now Qasim is nephew # 1 all others are 2 or lower ( I have 5 ). Qasim is a better man than me, I don't think I would have volunteered to watch and take care of 4 children (three of whome are handicapped and in daipers) for more than a few hours, when I was 22, or even now. Three cheers for Qasim a very special young man. May ALLAH reward him and look after him always. His parents should be proud, I swear I am.
Our day started with getting Abeerah to her surgery (for her hernia) appointment at 7 AM after we met with the Doctors Tayyaba went in with her prior to her being subjected to anesthesia. I then ran back to the apartment to get Zahra ready for her pre-operation appointment at 930 am. We got in around 9 am and they took us right in and got that all taken care of, soon after they got done with that I went up to the waiting area check on Tayyaba, Abeerah was still in surgery so I went back to the clinic to get Zahra to the appointment with Dr. Salim Idriss the cardiologist who gave Zahra an examination and went over her echochardiogram, that she had on monday, all is well in this department. By this time Abeerah was out of surgery and in the recovery room, and was resting well, after about 45 min. we got her ready and got back to the apartment. Qasim (see profile at begining of today's journal)and I went out for some lunch and brought it back to the apartment, and we ate. Made sure Abberah was comfortable and took Zahra and Bilal with us to get to her 130 pm appointment at "DUKE South 1-L" we had no idea where we had to go until we got to the place we thought we should have been, long story short we got to Zahra's nerve conduction study half an hour late. Zahra again held true to form she didn't care for things being attached to her body, and Bilal did his "see if you can control your three year old in a doctor's office routine". So Tayyaba had to take Bilal out and I was left with Dr. Chow to restrain Zahra luckily it went quite well all things considered, and the bottom line is that Zahra's nervous system is sending signals at the normal speed. Got back to the room and rested until Brother Ibrahim came over and helped me go shopping for the stuff we needed (size 4 & 6 daipers...etc.) we also ran out to "Kinkos" so that we could make copies of our flyers. Tomorrow will be another busy day. Keep us in your prayers....AMEEN
Tuesday, March 11, 2003
Day 10 at Duke Most of the day was spent with Zahra at The Clinical Center for the study of Development and Learning, in Chapel Hill, about nine miles from where we have been staying and testing the kids. We left out at 7:30 AM for the 8:00 appointment, Zahra was seen by several teams to evaluate different aspects of her developement, she did quite well I must say, as far as coooperating with the examinations. After close to to 4 hours later we broke for lunch, I went and finally purchaced a watch, my abilities to judge time by the position of the sun have proven inacurate. Tayyaba and I grabbed some lunch and got back by 1:15 to meet Dr. Escobar who led the team, her full report will be completed in about 3 weeks but for the most part Zahra is performing within the expected parameters for her age, with few exeptions in the areas of speech. We got done at The Center at around 2:40 PM and headed back to the hotel to get Abeerah to her pre-op appointment, I dropped Tayyaba off at the Hospital she was planning to meet some of the other Families already undrgoing the procedure. I got Abberah ready and to the pre-op meeting so they could weigh and measure her and get me to sign the consent forms, for the anesthesia and hernia operation. While there we met with the Child Psychologist who was to evaluate Abeerah and Khansa, she spent several minuets observing Abeerah while we waited to be seen by pre-op, I don't know how effective the evaluation was or what purpose it could serve other than to say that she was seen by a psychologist, Khansa was seen in the same fasion while I was in pre-op we'll have to see Khansa will be seen again on Friday. It was around 5PM when we finally got done, We got a call from Bob Groves at the "Record" who had some questions for Tayyaba and Me, He told us that the article was done and it would probebly run soon. got some dinner and I was out like a light. I am up now and it is now 3Am, wanted to make sure I got this in.
Monday, March 10, 2003
DAY 9 in Durham
Today we returned to the juggling act that will consume most of our remaining time here at Duke. Tayyaba was supposed to take Zahra for her 8:15 AM appointment for an echocardiogram (like an ultrasound of the heart), and I was supposed to take Khansa for her MRI.... Supposed to. So I took Zahra to her appointment and Tayyaba was to meet me and switch kids before Khansa was to go into the MRI.I still don't know what happened but the switch did not take place, I was told to report to the 4th floor in the children's clinic which I did, once I got there we got Zahra's weight and height to make sure she didn't grow to much since Friday. Then they sent me to the 7th floor in the main hospital to "pediatric echo" where I was told they were going to sedate Zahra.........WHY DON'T THEY TELL ME THIS STUFF....I would have woken her up earlier, but NO...They want to sedate this wide-awake kid with the same candy as last time...Chloral Hydrate..They turn the lights out and tell me they'll try and see if she'll just go to sleep on her own.... RIGHT...I turned the lights back on and told them to start the sedating so we could get out of here some time today.... This time they did something smart they added "Benadryl" to the mix and she was out in less than 45 min. Another 45 minutes later and they were all done. Now I have to find Tayyaba Beeecause we were not expecting two sedated kids and we have only one stroller between the both of us. I get down to the MRI section and they tell me she is still in the procedure and that I can wait for her to get done in the waiting room, I responded with a better Idea "please tell my wife to wait and I'll be back" ...so I take Zahra back to the hotel room and leave her with Qasim, run downstairs and get Qasim and the kids some breakfast and then proceeded to hijack a wheel chair from the hotel lobby and get back to the MRI section, where I am informed that they are now in the recuperating room and that I can go in, Khansa is not at all with it....she is incoherent and making a big fuss, so much that she can't even sit in the wheel chair without assistance, It's now around 1200 noon and I have to get back with Zahra by 1:30 for a complete "skeletal survey" so I get Tayyaba to sit in the wheel chair and hold Zahra in her lap. Nice work out!!! After returning the wheel chair Qasim and I run out to get some lunch, Subway veggie delights all around. We eat back at the room and then get Zahra up (she was still groggy from the sedation) Tayyaba wasn't feeling well so I volunteered Qasim to come with me for the X-ray festival. I haven’t the time to go into detail but this was fun too...15 x-rays and one accident without a diaper later we were done for the day, except for trying to find out the times and particulars of the remaining appointments for the week. Tayyaba want's everyone to know that she also had a rough day, when she went looking for me earlier she was told that she was to have Khansa weighed and measured at the children's clinic even though they do this at the MRI unit, and even though she was there at 8:45 they kept her at the clinic until 9:30 so that the MRI people could punish her for being late by making her wait 45 minuets additional. While Khansa was in the MRI apparatus she went looking for me, not knowing that I was on the 7th floor in the Main building.... (Somebody will say what a bunch of idiots, we'll say you try it.)
On a more somber note: When we finally got online this evening we were deeply saddened to learn that Reese Daniel Coble (one of the kids in the bone marrow transplant unit) was taken off life support and is now with the angels. We have left our condolences and invite our friends do so also.
http://caringbridge.org/nc/reesecup/
Sunday, March 9, 2003
Sunday 3/9/2003 Most of the weekend was spent recuperating from our weeklong schedule of testing. Saturday evening Qasim, Bilal and I went over to Adam and Ibrahim's house where their mom cooked us a great dinner. Tayyaba wasn't up for watching the girls as they explored new surroundings, so we brought her some dinner back. She was at the hotel when she got a visit from Sister Olaiya who lives in Durham; she came over with a bag of goodies for the kids. Speaking of visitors I have neglected to mention the wonderful people who came to visit us due to my preoccupation of getting the web site earlier this week. Dr. Farasat Ashraf and Sister Zahra Syed have been coming by regularly keeping an eye on us, her mom also paid us a visit in spite of her recent health issues, we really appreciate the home cooked meals she made for us. Early Friday morning we got a visit from Sister Akua from E. Orange, NJ who I believe is studying down here. She came and handed Tayyaba a check on behalf of the "Crescent of NJ". Also Sister Nuzhat Rehman came and met with us at the clinic, we are very greatful to all of them, they have made our stay very very home like. Yesterday I got a pleasant surprise from my Older Sister Naila. With all the work we had her do, in helping the site get back up, she has decided to make a web site of her own, she has been in contact with many of her friends on the internet and is getting them to donate quilt sections. I'll add a link to her site please check it out. http://users.110.net/~naila/ Sunday Morning we were invited by Alicia Bennett to attend a special event over at one of the local Malls at "Build a Bear" this was being held prior to the mall opening so as to have an environment safe for the kids that have had bone marrow transplants. We were kind of concerned since Bilal and Abeerah are still coughing and have slight temperatures, so we went late hoping to show our faces near the end, unfortunately, we missed everyone. We went shopping for food instead, the kids were happy to be out. Tomorrow we have a split schedule Tayyaba will take Zahra to her appointments while I will take Khansa to her MRI appointment. We are also anxious to hear how the Dinner went, at the Darul-Islah Masjid. we wish we could have been there, we know a lot of effort has gone into this event, we pray that Allah reward all for their efforts in planning and attending.
Friday , March 7, 2003
We got Zahra up around 7 am so that she would still be sleepy when we got her to her appointment for her Magnetic Resonance Imaging (MRI). After filling out the customary paperwork we were instructed to remove all metalic items from our and zahra's person and place them into a locker, this is due to the strong magnetic field generated by the MRI instuments. So after we testified that we had no metal implants, bullet fragments, metallic splinters in our eyes...etc...etc.. they finally let us in to the waiting area where they introduced two sedatives via IV... much more effective than the chloral hydrate. She was out cold in less than 15 min. I need this stuff at home. The MRI was confined to her brain so the procedure was over in about 45 min. Zahra was awake almost immediately. We got back to the room just in time for Me to catch a ride with Br. Ibrahim to make Jummah at the Durham Masjid, he came with about 50 color copies of our flyer which he distributed in less that 5 min. I had asked Qasim if he needed anything from the store, he had joked in response not unless you can get me a Halal Porterhouse steak.....so guess what I found being sold at the masjid...yup got me some fat porterhouse steaks hopefully we will cook them up tommorrow. In the meantime we were still waiting to hear about the adenoid removal/tube insertion procedure...we got that info around 3pm from June, one of the nurses ot Dr. Kurtzberg's office. they have scheduled it for Thursday the 13th, this is real close to our departure date, so we'll have to be careful in our decision to leave. We were able to switch Khansa's MRI to Monday instead of Friday so that we would be able to get Dr. Kurtzberg to take another look at her chances for transplant as well. We have no appointments scheduled for the weekend so we'll try to get som rest.
THURSDAY 03/06/2003
DAY 5 Today started quite early, after Fajr Tayyaba had to wake up Zahra and keep her awake so as not to have a repeat of yesterday, The only problem was that we didn't know if they were going to proceed with the surgery to insert tubes in Zahra's ears to allow for drainage of fluid trapped behing her ear drums, along with the removal of her adenoids and tonsils. So we waited to hear from someone at the hospital. The only problem was that the switch board was not working at the front desk and althought the hospital was calling us the phone was not ringing in our room. Finally around 0825 we got a message from the front desk to get ready to recieve a call from Duke that informed us that the surgery would not happen today, and that we should proceed to our 8:30 appointment to complete the VEP and EEG from yesterday. Tayyaba and I got to the hospital and Zahra was sleepy (fortunately) so they were able to start immediately. I went to the Medical Library to enter yesterday's journal entery. I got done just as Tayyaba and Zahra were finished. Got back to the room and we took Khansa out for some french fries. Then we got ready to go back for Zahra's Ophthamologist visit. Waited 2 hours for that to happen, but the doctor found Zahra's sight to be ok.
DAY 4 (continued)
PART II 10:15 PM
This day has been one to remember.
I took Abeerah and Bilal to the Urgent care and I must say they should change their name to not so urgent care we signed in and waited until 11 AM, I remembered that I had to get Abeerah to meet Dr. Skinner (a surgeon who is going to treat her hernia) got the kids dressed and got my co-payment back from the desk.
Dropped of Qasim, Khansa and Bilal who fever started to break.
And got over to the Children's center with Abeerah. Where I am surprised to see Tayyaba waiting to meet the Ear, Nose and Throat Doctor who she isn't scheduled to see until 3:30 pm it is now 11:45 am. She tells me that they tried for 3 and a half hours to put Zahra to sleep for her BAER & VEP, they had given her a dose of chloral hydrate orally to help her to sleep, well that just did not happen. They then told her to try and go over to her next appointment early and that they had said that they would try to squeeze her in. So I left Tayyaba waiting for the E.N.T. and took Abeerah upstairs to meet Dr. Skinner who evaluated her and proceeded to schedule a date for surgery next Wednesday
As I am leaving I notice Tayyaba is still in the waiting area, she told me that they have been telling her that they were going to be taking her in any minuet now, so I decided to wait with her.. when the nurse comes out for Zahra I follow her in and make sure that all is well, the nurse tells me that she'll be seen in a few minuets, so thinking all is well I take Abeerah back to the hotel and start getting lunch together. 30 minuets later Tayyaba is back at the room with Zahra, I thinking that was quick....no such luck after making her wait that ridiculously long and useless amount of time they tell her she has to come back at 3:30 PM for her appointment. Needless to say she was not happy. So I get to take Zahra this time and by now she is one cranky and unmanageable kid.. Tayyaba is still not happy so I take Zahra in by myself. BAD move. Guys if you can get your wife to do these things then do it because I'll tell you "that" little girl wanted nothing to do with Doctors, nurses or me she just kept crying right through the evaluation and consultation. Long story short Zahra has fluid in her ears which is and was expected, prior to the transplant tubes need to be implanted in her ears and her Adnoids and Tonsils will need to be removed, Children with San Filippo Syndrome tend to suffer from enlarged Adnoids which lead to possible complications during the procedure, we need to keep her airflow unobstructed, so we are now waiting for the date.
WEDNESDAY 3/5/2003 8:30 AM
DAY 4 Part I
Its around 8:30 this morning I just got Tayyaba and Zahra to the Hospital to get the:
(BAER-brainstem audio evoked response, and the VEP- visual-evoked potential; these studies evaluate the messages sent from the ear to the brain and from the eye to the brain. If time allows, they will also do an EEG (electroencephalograph).
In the mean time Abeerah and Bilal have both been running high fevers and I am going to try and get them some medical attention at an urgent care center. Khansa is not affected yet.
TUESDAY 3/4/2003
DAY 3
After fajr I try to get online and find several emails from Naila through the night. The last one basically says that all has been fixed I can now rebuild my site so here I am and this is it for today.
Lets hear it for My Sister Naila who can fix all my mistakes, well almost.
Oh yes we met with all the support personnel at DUKE who will be assisting us in various aspects of our stay.
MONDAY 3/3/2003
DAY 2
9 am Got Zahra to her tests
Blood work, pulmonary function tests, chest X-rays and an EKG
3pm met with Dr Kurtzburg.
She had the results from this mornings test and let us know that they all looked good.
4pm Went shopping with Qasim
6pm met up with Adam to work on the site no luck, I just about give up and My sister Naila calls as I am entering the hotel lobby, she gets all the usernames and passwords and goes to work while we all sleep.
SUNDAY 3/2/2003
Well we made it down to NC Sunday around 1 PM
We all took a nap and then went out with Adam and Ibrahim (Big Yahya's boys, for those who remember back in the days stuff). We ate pizza and spent a whole lot of time trying to get the site back up.
11pm and no luck we had to go back to the inn to get some sleep before the next days events
Saturday 3/1/2003
I thought this update page would have been easy to maintain, I have to give a lot of credit to Alicia Bennett she makes it seem so easy on her page http://caringbridge.org/ca/bennettboys/ Her son Tommy is undergoing the transplant procedure at Duke as we speak, please pay her a visit and lend her your support. We are in the midst of packing for our trip down to NC right now. I don't think we''l be on the road until real late. Khansa and Abeerah have been suffering from diarrhea that just does not seem to be confinable in their diapers, so our day started out with the usual bath and help from our trusty steam cleaner. We don't know how all these things will be handled in a hotel room environment. Thursday night Bob Groves from "The Bergen Record" came over and spent quite a bit of time with us. We hope that they can run the story soon, as now we have made arrangements for accepting donations "see our new donations Page". The whole experience has been quite humbling the amount of support has been overwhelming. We would like to thank everyone for his/her support. But especially Sister Elliette Askia who has been a gem of a friend, who selflessly came to our rescue whenever we needed it; even when we didn't know we needed it. She had planned to go with us as a care giver and stay with Tayyaba and the kids, but has tragically been diagnosed with a severe illness. Please when you read this, stop and say a prayer for this noble and beautiful sister that Allah (God Almighty) restore her health.
I don't know how easy it will be to update this page when we are in North Carolina, so please bear with us. We will try to keep everyone informed.
Keep us in your prayers. (Insha-Allah)
Tayyaba & Zarrar
Wednesday, 2/26/2003
We are scheduled to begin testing the girls on Monday the 3rd of March 2003 at Duke Children's Medical. We hope that all will go well. We are still trying to get our act together. We still have to find someone who will be able to help with babysitting the girls, when we are at the hospital, transportation is another big issue, do we rent a van or do we buy one? The cost of renting a van for 2-3 weeks is not cost effective, and then if the procedure is to be perfomed another 6 - 7 months is out of the question. Living arrangements are another concern. We are probably going to get a hotel for the initial testing but this also will not be affordable when we have to stay for several months. Does anyone know if there are Halal food vendors in the Durham, NC area? Your messages and e-mails have been overwhelmingly supportive, many have been answered, and we intend on answering all of them. Keep us in your prayers. (Insha-Allah) Tayyaba & Zarrar
.....Zarrar was telling the doctor that ..... he is thankful that i did not use the gun 
I want to say my special thanks to Husna for taking Bilal to the library every Saturday. He is able to get new books every week and so happy to read them. He loves going to the library and wait for saturday to come whole week long. Now he is spending more time in reading than watching tv. His behavior is change a lot. Not complaining for not going out much. Also helping me around the house to earn his quarters. 
Khansa start choking during feeding time. I am giving her small pices of food but now i will put her only puree kind of food. 
HAPPY BIRTHDAY TO ABEERAH
Many of you already know that we have started a trial study with our all three girls (Abeerah, Khansa and Zahra). It is unofficial here in the USA, but very low risk. We are using Soy Isoflavones that are rich in genistein. It is now has official approval in Gdansk, Poland to be used as a trial with humans. They will be starting in July. So this is truly groundbreaking new possible treatment. We have only been on the genistein for just over a week and seeing results. We are really exited about this. We are hoping for best results. Only time will tell, and it will take time, not just days. There are more children now in the USA that will be trying this also. So please keep all our children in your prayers. As we do not know long term effects yet. Only time will tell. 
Abeerah have more of her hearing lost than before. I drop her hearing aids to fix and new mold also going to be made. She also having a hard time focusing.
I am so releav to find out that Ammar's urine test for MPS testing came negative. We also test Bilal as well. Both boys do not have sanfilippo Syndrome. ALHAMDULILLAH.