Click here to go back to the main page. Click here to view older journal entries. Thursday, January 14, 2016 6:19 PM CST I haven’t updated here in a very long time. Many of my friends and family often reminded me how they love to see an update on girls' journal page and how they miss seeing their daily updates like when they were young(before FaceBook). So today i thought instead of updating on Facebook i write here few lines how things are with my 4 special needs. As most of you know, we are facing the last stage of this disease (MPS) with Abeerah and Khansa. Khansa is on “hospice care” for last 3 months now and been staying home from school for more than 4 months. And Abeerah’s school also ended on her 19th birthday and she been home for 2 months now. Both girls are now very sick, 24 hours in need of oxygen to breath and need constant care. Heavy duty meds for their pains and symptoms keep them drowsy and sleepy most of the day. Same daily routine of changing their position form one side to the other side, feedings, meds, staying mostly in bed, isolated in their room for 24 hours. Always appreciated but more realized now how much school was blessing for them. Something to look forward to every day. Bus rides, school trips, therapies, school parties and looking forward for weekends. Now watching their limitations and falling health have build a knot in my stomach which feels like getting tighter and tighter by the passing hour watching their struggle and feeling helpless day after day. Last three weeks been very hard with Khansa. Her rapid and deep breathing, specially during the winter break time, i had to call Hospice in emergency couple of times and they arrive with increase of the Morphine for her to slow her breathing down to help prevent it from having a respiratory arrest. We came down to 40 MG of Morphine every three hours. Nurse brought us papers to sign for DNR and told how her lungs are filling up with fluid, she is declining and how we need to make ourselves ready losing her. During that awful time i get to learn that hospice is not here to help her recovered from this instead just here to make her ending pain free. by drowning her in Morphine. I had to take a stand and start making calls and pressure on hospice to give her antibiotics which she was in desperate need. Also taking her off of “Hyoscyamine” and “Rubinal” which was given to her to dry her heavy secretion which never been any help instead making matters worse for all my girls in all these years in past. Antibiotics helped her very much and slowly her breathing came to normal. Still lungs not clear, on 6-8 litter of oxygen mostly but she in peace most of the day. Still haven’t able to control her shaking episodes, having one to two episodes per day which last 3-4 hours long at a time. Full body shaking, heavy breathing, dropping of oxygen level in low numbers, heart rate keep rising up to the roof, rising temprature and heavy sweating. Hard to watch. All you can do is to stand beside her, suction her continuously from chocking, keep wiping off the sweat and pray for that misery to stop soon. Her sensitive skin caused pressure sores which ever position we lay her. Bandaging her take so much time and healing of the wounds are very slow with her. She been put on only two feedings a day for a month now and she have lost 10lbs since. Giving her bath is a true heart break for me. When girls diagnosed in 2002, having a very rare disorder, our genetics could only told us 3 things about this. One, there is no cure for this disease, second, the girls are not going to pass age 13 and third, they will suffer terribly. I never understood the suffering part. It always stuck in my head repeating over and over and always haunt me down. Always thinking why doctor said that?? how it is even possible??? we live in 21st century and in the modern medical times, then why we were warn about their suffering a lot???? I always calm my self that i will go to the moon to help my girls if i have to and not let them suffer. I will pray hard for them till my last breath. But i guess what, i was wrong in that. For years watching their struggles, pains, Seizures and in these awful hours long of shaking episodes… It’s not easy to be strong when you feel so broken inside. Emotions can take over you very easily when it comes to your children’s suffering. Our life have change so much. My day starts with caring for my kids and not even know when it ends. Not sure when it is morning and when night falls. Good night sleep is a beautiful dream to me and even naps are on the edge. I have become totally home bound. I can count the times i stepped outside this past year easily on my fingers. It become so rare to go out that when i am out for kids medical needs, feel like i am doing something wrong and nervous to even drive. Barely moment for myself. Social life, marital life and business all taking a toll but you try to make the best of what you got. My day is become like a roller coaster, Some moments are hard, and other moments are harder, and some moments are like you can hardly breath. Time here is not measure in days now instead of measured in moments. How to cherish each and every moment and not knowing what the next moment can bring to us. Raising one typical teenage boy in high school, one severely Autistic boy and 3 MPS severely ill girls. You are divided in so many directions. My each child is full of their own set of challenges and requires full attention. Some moments i live in true regret that not doing enough for each of my kid and some moments feels like what else more one person can do…… Fear is such a weak emotion that make you scared of almost everything. In these times I have learned that fear of our weakness only strengthens our weakness. I have learn to find strength from our pains and our circumstances and find wisdom in each of these heart aches and learn to grow stronger. Time does fly away regardless of how brutal some moments may be, how much filled with grief, pain or fear. Holding on to our Imman(faith) is the ONLY KEY there is and trusting in Allah swt (GOD) fully is is the ONLY WAY OUT. There is a purpose and wisdom behind everything what HE bring for us. He is the planner of our affairs and he knows what is best for us. When writer of your affairs is GOD ALMIGHTY himself then why we need to even worry?????? The Messenger of Allah (sallallahu `alayhi wa sallam) said, “The greatest reward comes with the greatest trial. When Allah loves a people He tests them. Whoever accepts that wins His pleasure.” (Tirmidhi - Ibn Maajah) I have learned the secret of being content in any and every situation. In last 4 months since girls have gotten severely sick, I've learned more of patience, contentment and having my full trust in Allah swt. My love and faith in HIM only have grew stronger. Having my 3 beautiful girls still with us here is a true blessing that I cannot imagine my life for a minute without them. Be with them in the morning or at night, talk to them about things going on, hold their soft warm hands, stand next to them to watch them sleeping, lay down next to them, cuddling with them, find coolness in my heart just lay my eyes on them passing by their room or watching into their bright eyes and kiss them as many times i want to which i can not even imagine to live without once they are gone. The Messenger of Allah (sallallahu `alayhi wa sallam) said, “How wonderful is the affair of the believer, for his affairs are all good. If something good happens to him, he is thankful for it and that is good for him. If something bad happens to him, he bears it with patience and that is good for him.” (Muslim) Ammar Tayyaba Beg "My tests have brought me to my knees and made me acknowledge my own nothingness, and taught me that Allah is center of my life and therefore I could see him in everything” For more updates check my Facebook "Tayyaba Beg" Check out our new brand A.K.Z which is designed in honor of Our 3 Little Butterflies. --------------------------------------------------------------------------
Thursday, December 8, 2011 2:51 AM CST
Thursday, June 4, 2009 0:26 AM CDT Its been so long again. There is so much to share with you all. So much have been happening here. Its been a emotionally hard couple of weeks. We lost one of our MPS friend Andrew who we get to know from the MPS forum. Never met him but become close to him and the mother over the years through internet. I can only imagine the pain parents are going through. May Allah give his parents strength in their hard time. Amen Abeerah' s seizures been increased. Its happening more frequently and more uglier than ever. It is very scary when she bite her tongue during seizure and blood cause gagging and chocking during seizure. Neurologist increased her seizure medication and add COLONAZEPAM with other seizure medications. Friday we will see Dr and figure out why more seizures and how to help her. She is also gagging a lot during night and need to keep an close eye on her to avoid chocking on her saliva. We having some better days with her since weather is great. Her smiles are priceless. Her talks in her cute voice is so appealing my ears. I LOVE to see her happy. Her sensitivity to heat become more intensive. We have to keep her cool all times to avoid possible seizure or passing out. Khansa's body making her very uncomfortable. She is not comfortable in sitting in any position or lying down on her back. Her legs and turning inward feet gets cramps up a lot. I had couple of visits to Pediatrician for Khansa's crying out loud. Pediatrician was worried to see her back arching up but she said there in nothing we can do to help other than sugary which she do not recommend since she is so young. She also start Khans on reflux medication which did help her discomfort some level. Her drooling been increased tremendously. Its like faucet have left on. I am going through so many change of shirts and clothes diapers(which i find after using every thing is the best absorbent materiel). At night Khansa sleeps on her side or as a fetal position and needed to be give turn and change position. Her feet tun purple often due to poor blood circulation and Dr told that keeping her feet up or messaging them often will help her. Since she don't move much and siting on one place causing her skin breakage in her back and on her hip area. I am really worried for Khansa and my heart sinks looking at her condition turning worse. Zahra is doing great. I am so happy to see her able to walk her own to the trampoline and jumping for hour in the back yard better than last year since she been wearing the support jacket to keep her back from bending and giving her support to keep her balance well. Her foot growth been stopped and she been wearing size 12 shoes for last 3 years like her sisters. Her feet also start turning and PT put tapes on her feet which helps a lot. So thankful That she is doing well. She is the princess of our house. Bilal been doing well. He have lots of school projects to complete this week. Last day at school will be 24th of June. He have 100s of plans for the summer vacation. Developmental pediatrician thinks we should keep him involve in summer school or some kind of camp. I hope i can find some thing for him to keep him busy. Please do let us know that you stop by. Your support means a lot to us. Please keep my family in your prayers. MPS CHILDREN
Friday, May 15, 2009 1:16 PM CDT I hope you all are doing well and enjoying the beautiful days of spring . Thank you for keeping my family in your prayers. I am so thankful to be back to be on my feet and that awful head ache have gone. We are having a beautiful spring days here. Every thing looks so green and beautiful. This is my favorite time of the year since it is a MPS friendly weather. Please remember in your thoughts and say a special prayer this Friday for all our little MPS friends who are suffering from this disease, the one have already lost with this disease and specially families who have to watch their love ones in their most suffering. May 15th is a MPS awareness day. Please help us spread the word. Wear some thing purple to honor these children and show you care. Please tell some one what is MPS and what it does to our children who are dealing with MPS. MPS AWARENESS VIDEO Only your support can make a difference. Please tell your family, friend or co worker about MPS. Together we can make a difference. Please keep my family in your prayers and keep on checking back here for more updates and pictures. Please keep Andrew in your prayers. He is loosing his fight with MPS. Please keep his parents in your prayers to ease their immense pain and for their strength.
Saturday, May 9, 2009 9:51 AM CDT Happy Mother's day to all moms. Before I was a mom I never tripped over toys or forgot words to a lullaby. I didn't worry whether or not my plants were poisonous. I never thought about immunizations. Before I was a Mom, I had never been puked on. Pooped on. Chewed on. Peed on. I had complete control of my mind and my thoughts. I slept all night. Before I was a Mom, I never held down a screaming child so doctors could do tests. Or give shots. I never looked into teary eyes and cried. I never got gloriously happy over a simple grin. I never sat up late hours at night watching a baby sleep. Before I was a Mom, I never held a sleeping baby just because I didn't want to put her down. I never felt my heart break into a million pieces when I couldn't stop the hurt. I never knew that something so small could affect my life so much. I never knew that I could love someone so much. I never knew I would love being a Mom. Before I was a Mom, I didn't know the feeling of having my heart outside my body.. I didn't know how special it could feel to feed a hungry baby. I didn't know that bond between a mother and her child. I didn't know that something so small could make me feel so important and happy. Before I was a Mom, I had never gotten up in the middle of the night every 10 minutes to make sure all was okay. I had never known the warmth, the joy, the love, the heartache, the wonderment or the satisfaction of being a Mom. I didn't know I was capable of feeling so much, before I was a Mom ... Its been quite some time again since my last update. Time is just going too fast. Weeks passing like a days these days. Last three weeks been busy with kids spring break. First Abeerah, Khansa and Zahra had a week off but we did not do much since days were too cold to take them out any where. Just relax at home with them. Next Bilal's spring break. He had many plans for his vacations but things did not went like his plans. He wanted to visit his aunt in MA but that did not work out with some reasons. Other things in his list was, he wanted to go on the beach, parks, Malls and museums. It was nice having him home. He helped me making other kids ready for school and then we did breakfast together every day. First three days it rain all day. So we cut the out doors and just visit places with roof. We did some shopping and rent movies to watch at home with all kind of junk food to eat. Last couple of his vacation, dealing with Ammar's behavior issues and staying up all night left me without any enegy for the day to run around with Bilal. Also he end up getting some cold and cough. So according to him, he had a bad vacations. Then there was Ammar's vacation. His vacation do not know if will be remembered by him but by me will for years. It started with his very aggressive behavior toward every one. Biting, hitting his head to hard surfaces, not sleeping at night, getting in to every thing that comes is in his vision and tremendous energy made me overwhelmed. Also weather took a sudden change. Hot weather which i was not even ready for it with (fan, Ac and summer clothes) Yet, made Abeerah sick and she also had seizures. Khansa started to cry a lot. Zahra had a very hyper behavior. I only find couple of time to take Ammar to the park and the mall while other kids in school. Khansa's crying increased by Friday(May 1st). And Zahra had very very hyper behavior. Trying to figure out what is bothering them is always like a hard exam for me. Put my guessing ability to work. Try every thing i can think off. Tylenol did calm them little. I thought Khansa had a reflux issue since she did not want to lay down at all and cried after each feedings. I add Pepcide with her meds and that did helped her a lot. Saturday(May 2nd) morning find Zahra with her ear leaking grayish thick liquid. Call the doctor and she gave her antibiotic with drops for an ear infection. I had some relief that at least we know what is bothering her. Entire day went really busy for me. Ammar kept me on to cleaning after him whole a lot. None stop keeping him from hanging out his more than half body through the windows or finding him out in the yard totally naked. Khansa and Zahra was keep on crying since Zahra medication left behind closes pharmacy door who close too early with their new schedule. Bilal wanted to go to toys R us and got upset for not taking him out any where. What a rough day. That night, i was happy that day was over. I went to bed fine and woke up Sunday morning with high fever, throwing up and could not even able to stand with dizziness. My Sunday went really horrible with sickness, no help available and kids needs constant care. Ammar did his best in making messes. In kitchen, all the raw foods which i keep in cabinets reach to the ground and none clothing drawers left in the house with clothes in it while i must have pass out with fever. Each time i could stand i was on my knees praying hard to make me well. I can not afford to be sick here. My 4 kids are special needs and all they got is me. Monday(May 4th) Abeerah also got fever, Zahra with ear infection, Not happy Khansa and Ammar who was up till late night 5am running one corner to other as loudest as could be, and now could not open his eyes. So only Bilal went to school that morning. I was still running fever. Could not able to stand up with dizziness. Had to get up once girls was up. Happy that evening Lilly came to help. She stayed 4 hours and i took a rest(kind off). Tuesday early morning Khansa had 3 hours of non stop crying out loud. Could not figure out what is bothering her. This time Tylanol did not even helped. After sending other kids to school, i made an appointment for her. Hour before her appointment, her left ear started leaking blood. Zarrar pick Bilal from school early so he don't have to go later and can watch the other kids home so i can take Khansa to the doctor. Khansa was really happy at doctors office. First time in days i saw her smile. Dr said build up pressure was bothering her now ear drum is ruptured and pressure is released that give her relief. Poor baby. Coming back my head was so dizzy and i could not focus with my vision so i stop some place for while. Feel little better and slowly drove home. Finally all girls are doing much better since Thursday and i am so happy for that. What a relief it is. Still giving Khansa and Zahra antibiotics but drops in the ear is quite struggle to hold them down. I still don't understand why ear infection to two girls and at same time. I am still not fully recover from my sickness. My head been really Dizzy all the time. Its seems a huge pressure on my head like carrying some heavy burden. And i can not keep my eyes focus. It is really hard for me to keep up with every thing and specially run after Ammar all day. No medication helping him so far to put him to sleep. I am so over stressed over his school issues. I feel like time is just wasting and we so running out of time. And also over not receiving any help for him from any where. I talk to her pediatrician for him and she think i should call DYFS for him and that is the only way i can get state to help me out with services. But what i know, DYFS do not have good reputation. All they do is take the kids away from parents. I know a lady who ask them for help and end up loosing her kids. It is just hurt me so much and frustrate me to see my child turning manic and not being able to do any thing to help him. I think once you become a mother, your worries never ends. Today and always praying for my children.
Friday, April 17, 2009 10:33 AM CDT Its been so long since i update here. I am really sorry for long delay this time in updating. This winter been really busy here than ever. I want to thank you all for your emails, calls and guest book messages for requesting an update. Your love, prayers and support means a lot to us. Thank you thank you thank you.
Saturday, December 20, 2008 6:43 PM CST
Today Zahra's birthday. My sweet little princess turn 8 years old. She is doing really well. I enjoy every moment with her. Her hugs are so sweet. Her smiles and giggles are priceless. Both boys are keeping me really busy these days. Thanks for stopping by. Keep my family in your prayers. Your support and prayers means a lot to us.
Tuesday, December 9, 2008 2:24 AM CST
Today we celebrate EID-UL-ADHA. The Eid ul-Adha comes next day from hajj and simply celebrates Abraham’s willingness to comply with the request of Allah to sacrifice a beloved son. At the last minute of this sacrifice, Allah spares Abraham and allows him to sacrifice a lamb instead. This sacrifice of generally sheep or goats is shared with family, friends and the needy. Bilal is off from school this week. He wanted to go for prayer. For that he helped me making the girls and Ammar ready for school so we could leave early for the prayers. (not easy on me send my kids to school on holiday time). It was very very cold today. Prayer was beautigul. Almost 3,000 people were there. during speech, a lady sitting front of me with her three little girls and keep taking her daughters pictures. Hugging them over and over put me in teras missing my angels.(holiday time is not easy for me). Meeting all the people was fun. Bilal got really upset becasue all gift finish when his turn came to get one. He were really sad before missing his father and this on top made him angry so I took him out for breakfast to make him feel better. He order pancake with lots of wip cream and strawberries. I wanted to take him to toys store but it was time for Ammar to get home so we returned home. Please check back soon. i will be adding pictures of Bilal's hajj day at school soon. keep my family in your prayers.
Tuesday, December 2, 2008 6:36 PM CST I have not update here for some days. Time sure passing fast. Zarrar have left for Hajj this year. He left on 21st of November with group of peoples for 22 days. It is like when some one drowning, he tries every possible way to save himself. That is what we trying to do. Last thing we have is to pray hard from GOD for help to ease our tests and help us and give us strength to bare the burden of our children's' suffering. Since girls diagnosed and we get over with the stem cell transplant decision, I wanted to visit Bait-Allah in Makah with my kids. I wanted to go there and make prayers for my daughters' cure. Give them lots of Zam Zam water. Due to traveling difficulties with kids and expenses, Zarrar decided to go himself this year. I could not be more happier than i am because i do believe it will be great for him and his family. May Allah accept his hajj, accept his prayers and all our scarifies that we made for him to able to do this. Its been very difficult without him for sure. Being a apart from him after long time is very hard along with all the stuff i am taking care off all my own right now. But thank GOD, with HIS help, i am managing alright. I was finally able to talk to Zarrar after whole week of waiting. He is doing alright and at present staying in Madina. I am praying for his safe return.
Monday, November 17, 2008 1:54 AM CST
Tuesday, November 11, 2008 9:59 AM CST Its been really sad here since i got the news about the loss of another MPS girl name Maggie. Maggie was 12yr old. She also lost her Brother Joe due to MPS, 6 months ago.You can watch both, brother and sisiter by clicking here. This is very hard for parents that word can't describe. Please keep Langford family in your prayers for their strength. Ammar is having fun. Khansa and Bilal are doing well. I am very thankfull for that. Bila is getting better in is studies. (I have to stay on top of it off course) Last week our main drain backed up and cause damage in the basement. It was couple of rough days. Laundry satrting to pile up high but i am thankful that is taking care of now. Lilly and her daughter Keumi been coming to help me out for 3 times a week for few hours. They been a great help. it is wonderful to able to leave when they are here for appointments of just to pick up groceries. I can't ask more than that. Our trip to local park> Thank you for checking here. I am very thankful for your prayers and support. It means a lot to us. Please keep it up.
Monday, November 3, 2008 11:06 AM CST
Friday, October 24, 2008 11:12 PM CDT October 28th is Ammar's birthday. He is going to be 5 years old. I can't believe he is grown so big already. Also we have his IEP meeting which i know going be horrible. When he diagnose with Autism, Dr. said it is going to be ok with therapies and he will be talking fine by age five. Please pray that i make the day with out crying. __________________________________________ I am sorry for not updating here in some time. These days, finding a time become really hard. I am struggling to keep up with the Kids, house, husband and business. Some times it feel like that time have shrunk. I can't do all need to be done and leaving it for tomorrow never get done. I have tons and tons of paper work to fill out for school and for Drs. Abeerah had a seizure two nights ago during her sleep. It was 1:30AM and i was in my room trying to make Ammar to go to sleep. I heard Abeerah gasping for air on the intercom and ran to her. It lasted for 3 minutes after i got there and after she fall a sleep. Last two days she is not her self and having a hard time to sit her own. Sleeping a lot more. Breathing heavy while sleeping and drooling non stop and as soon as she wakes up, she choke terribly. She missed school for 3 days. I hope she get better over the weekend. Khansa is not doing well lately. She is happy and smiling and next minute she cry out loud for hour. I am not understanding what is bothering her. All the things i can think of is or according to my check list, nothing is believe bothering her. I only wish she could talk for a minute to tell me or if only she can sign it. I start her on seraquil(behavioral medication) and it seems help her a little for sleeping because she was not sleeping for some times. She do not want to lay down at all and she sleeps sitting down. And that is painful for her back which is already formed in arch shape. Zahra is doing good. She is being really cute these days. Smiles, laughs and dance around. Oh she is such a sweet little girl. Her giggles make me smile. I love her hugs but it is only for few seconds then she will push you away. And watch out her pinching when she come close. That is her way of loving you. She spend hours and hours jumping on her mini trampoline while looking her self in the mirror. She had two incident choking bad on her food while eating which was just a soft oatmeal and i am getting to worried on that. Bilal visited ER with bloody head last Thursday. He fall in the bus coming from school. He was standing in the bus when bus stop suddenly and he flew to the front hit the seat corner and fell back ward and hit his head on a metal. In ER they clean and staple the cut. I grab my heart My heart when i saw him with bloody head coming from school since my MOM had died with falling on her head and having a head injury at the same place like Bilal. She had internal bleeding after even Dr. did the stitches on her head. Stay on safe side, I wanted to get the X-ray and CT scan done but Dr. talk me out of it since he is a child and there is not much chances of internal bleeding in children. Bilal is doing better now but complain of head aches some times. yesterday i took him back to ER and got those staples removed. Now i have to fill a lot of papers for the school which they just thought the need of it after this incident some about the parents repressibility and rules of riding the bus and stuff. I am just praying hard each day for Bilal. His attention have lot of issues. I talk to one of the dr. in kids pediatrician group on our last visit and she think he need to be tested for ADHD and need to talk to our main Dr. We attend in his school parent teacher school night and all the teachers have a same issue that he is not completing his homework. They are very strict about the home work and 25arks are from the home work. I spend hours each day with him after school to make him do his home work when most of the time he have no idea if he have any home work. And then he leaves the done home work at home. i really have to stay on top of his each matter. From brushing his teeth to making his bag ready or even dressing him and all his little needs. I get really sad when it comes to him and worried about him. Ammar's school issues making me and Zarrar about to loose our minds. I am so frustrated with his progress in lack of therapies at school. Ammar deserve a better education and more than twice a week therapy. Kids with difficulty saying just a "S" letter properly getting more than twice a therapy. And Ammar is Autistic. He have no language and increasing behavior issues. Teaneck have given us more than enough hard time. Case workers should be on your side and provide you what best for your child but here comes Ammar's case worker who just keep defending the district in trying to save their money. Now we came to the point where we should move from Teaneck or get a great lawyer to fight. With all the lifting, my shoulder is in lot of pain and each time i move my arms, i can hear a clicking sound. Abeerah have gain more weight and starting to slips through my arms when carrying her upstairs to the bath room. I have brought her bed downstairs and she been sleeping there for some time now which i am not happy about. I make several trips at night to check on her and keep my intercom on loud for any chocking or coughing sounds. Always scared if i can't able to reach her on time. Thank you all for your prayers and support. We need them so much these days. Please keep it up. I can not pay you back for your support but I know for sure that ALLAH will reward you 10 time more in return in this life and after. InshaAllah.
Friday, October 10, 2008 11:22 AM CDT Quick update. OCTOBER 11th. Abeerah recover so well after having two seizures in same night which i was so worried about after seizure symptoms which she been having for each time she had a seizure for long time. It always took her at least two days to get back to her self. Specially last month seizure left her shaking for days and not able to move her own. She never fully recover from that still. But i am happy and thankful for all of nice people out there praying for her. She is looking around and being her usual self but her coughing is gotten worse. Last night she gage so much that i though of going to ER in middle of the night. I am not sure this coughing is due to throat trouble which i am dealing with or due to reflux. She aspirate more at night time. I get really scared at night and not happy the way things turn for her at night being so uncomfortable. But she is much better in the day time and able to go to school and do great in school. I want to speak to her Dr about her coughing at night but unfortunately, i have lost my voice last 2 days due to throat trouble. I know Bial is having a good time with that since no yelling for home work or asking him for help with Ammar. Taking Antibiotic now and hopefully get back my voice soon. Zahra and khansa are doing very well lately and being so cute. Lots of smiles and happy moments with them. I love and truly enjoy hugging, playing and dressing them. I am so blessed for these sweet moments. Get sad inside for thinking of the future but other hand getting lots of happy tears for now. Ammar been Ammar... too much to handel but cute like a button. His sleeping trouble really gives me hard time at night. I have to unscrew the lights so he is unable to turn lights on at night but that little man walks around in a dark with out having any fear. He throw down any thing comes in his way so tons of mess to pick up left for me to keep me busy while he is in school. I really praying hard for his improvement. Bilal is doing well. He had a great field day to museum park. He ask me why don't we go to places like that. His attention is getting better in school and with home work. He got A on his last tests. I hope things continue to stay smooth with him. Ameen. My cousin is here living with us for a week for her job in NY. She Also helping Bilal with his homework which is a huge help. Please continue to pray for my family. Your support is really appreciated here. We are making our each day only with your support and prayers and HIS blessing.
Wednesday, October 8, 2008 12:57 AM CDT Need your prayers.
Sunday, September 28, 2008 7:52 AM CDT
Tuesday, September 30th Thank you for all of your prayers. Things are well here now. Kids are doing ok now. Abeerah is doing much better. Thankfully, her fever broke and all the gagging stopped after two bad days and now she is happy and looks active again. I am very very thankful for this blessing that we did not to admit her in the hospital. Ramadan's almost over and just couple of more days have left. Can not believe the whole month already passed. May Allah accept ours and yours struggle in this month. Ameen. I am so happy to tell you that yours and mine prayers did answered with the blessing of Ramadan. One of my old helper(Lilly) who helped me couple of years when girls was just diagnosed. She came back. She and her daughter comes to give me hand in the evenings. She said she cannot do it alone since it is a lot to handle. Now i have help for laundry and i can not tell you how big relief is that. Its like a some one took a huge rock from my shoulders. Thank GOD. I need your prayers for Ammar. His behavior is changing so much and really make me upset to see. He don't take "NO" for any thing. He gets in to tantrums and gets really loud and wild. He throws every thing comes in his way and bite who ever comes in front. I am unable to hold him down when he is like that and feel helpless. Please pray. Kids are off here for two days for jewish holiday. Since Eid is in two days and weather will be nice, I hope, i can able to take them out for EID prayer. Sending every one a EID MUBARK in advance.
Sunday, September 21, 2008 2:43 AM CDT Allhamdulillah(all praise to Allah) Things are going well here now after couple of hard days due to my own health. It all started on last Friday when i was taking Bilal for his Uniform, school supplies and shoe shopping since he was going to a new school. While driving, i started to have blurred vision. Couple of time i find my self passing out so i head home. That day and couple of next days, i experience migraine head ache, No vision ahead 2 feet, Stiffness and pain in back of my neck, unable speak or able to make sentence, Fatigue and so much of weakness that could not hold any thing in my hands. I just lay around my kids and drag myself to change their diapers and taking care of their needs. I feel really sad for my children who need my constant care. Felt very emotional. Start the search on the net to find out what is going on. It stated several places that is anxiety and it happens with overwhelming stress and lake of vitamins( i know i should be yelled at on this one).
Friday, September 12, 2008 3:06 AM CDT Ramadan is going very well here. Allahmdulillah, Me, Zarrar and Bilal are keeping all our fasts. We are loving our time of Saher and time of iftar.
Tuesday, September 2, 2008 11:02 PM CDT Today we marks the beginning of the Holy month of Ramadan. Another year has passed and this time around we all should make a Ramadan worth while! To those who don't know about Ramadan.....Ramadan is an islamic month. It is the chief of all months and the most glorious one. Ramadan is the month of fasting, intensive prayer, sacrifice and Divine worship. It is not just keeping your self from food and water, but as explained by the Holy Prophet (S.A.W.), exercises strict control over his tongue, eyes, ears, thoughts and deeds and does everything possible to seek the pleasure of Allah (SWT) Girls been doing well lately and i am very very thankful for that. Only worries me that Abeerah been sleeping whole a lot. She sleep most of the day and awake only for few hours these days. I decreased her medication(seraquil) to see if that is not the case but have not seen much difference in her sleep. Ammar school is starting from tomorrow. I been trying hard to make his schedule for sleeping sleep at night for going to school but he is very wild at night. He doesn't sleep at night. It is really break my heart watching him going through strange behaviors which i do not have any answers for. I been reading books about Autism and finding stuff for him online to help his issues every time i get. Please pray for him specially during this month when all prayers do come true. Girls still have one more day of vacation left. I am sad to know that they are not going to have same bus driver and aids this year which we had for last 2 years. They been really nice to us. District changed the bus company this year. I hope new crew is as understanding and loving as the old one were. So one more day i am going to relax with my daughters before crazy schedule of making 5 kids ready before 7:30 in the morning start. Our water leakage issue turn a big head ache. Zarrar dig the entire area to remove the old lead pipes but due to long weekend, It is just did not went as planed. One plumber comes and other goes. Some could not understand to fix it since it is old pipes. Water shut down with out notice for whole day and then given back but with the fear of going again. Since front of the house is left with big hole for whole week, Taking the kids out been really hard. Keeping Ammar away from it an other story. House been really dirty with all the dirt come in. Not having a flowing water when ever you want it makes me thankful for the running water blessing we have. I know many areas in the world, people don't have enough water and some have to travel each day to get water for their daily use. Finally Zarrar find a great plumber who was able to finish the work without leaving in between and from 8:p.m. today we are back with running water. I am so so happy and thankful. Finally i will be able to give kids a bath. Now we have to fill the hole in front yard. Zarrar's cousin visit us from Canada. It was really nice having her over. Zarrar and i took the kids to sight the Ramadan moon on 31st of August. Zarrar's family came to join us there but even looking with binoculars and on a clear sky, no one was able to spot it. We went out next day and after a little struggle, we all saw the moon. we hardly able to see a very very thin moon and i don't understand how people start Ramadan 2 days earlier. I tried to take pictures but it was so thin that keep disappearing on us and i could not catch it in the picture. We all make prayer for forgiveness and lot of blessing in this month. Starting a month with sighting the moon is a lot of blessing and also a great pleasure to keep a Sunnah alive. Prophet(pbuh) said in a hadith "The best of Allah's servants are those who observe the new moons and shadows as a way of remembering Allah." (related by Imam al-Hakim,)
Wednesday, August 27, 2008 3:43 AM CDT Its been over a week since kids been not doing too well here. Weather changing making every one taking turns to get sick. Ammar and Zahra did their share and then i got sick. My throat got infected and i am taking antibiotics for that. This sickness and bad cough drained all my energy and on top Ammar been very very hyper and cranky and just wanted me to hold him all day. If i try to put him down or try to step away for him, He just get in to tantrums and bang his head hard on any thing front of him and get seriously hurt himself. That made things quite difficult for me to take care. Abeerah still not recover 100 from her last seizure. She wants to stay in bed and do not like to sit at all this entire week. Each time i move her from one place to other, she looks very uncomfortable. She is not roaming around the room like she use too or talk in her cute way and at night, she do not take a turn by her self and stay in same position like i left her. Aspirating a lot these days which gets worst at night. Since yesterday, her condition got worst and i believe she had an other seizure during sleep which i did not hear and she been down all day with head thrown a side and foaming kind of drool coming from the mouth. More likely very sleepy but eyes looks fine and in place and she is not shaking like she usually does after having a seizures. It could be a mild one. My heart hurts when ever i look at her. Please pray that she recover fast from this and get back to her self. Please keep my family in your prayers.
Sunday, August 17, 2008 0:53 AM CDT I am sorry for not updating more often here these days. With Kids been home, day fly by really quick. Abeerah had a seizure on Monday which left her in a horrible condition and it took 3 days to get her back to her self again, able to hold her head her own and able to sit down with out support and able to look at me and smile. I am thankful to get her back. Dealing with seizure it self a horrible thing to watch happening to your child and after seizure that recovery time is another rough time on parents to deal with. Please pray for "NO MORE SEIZURES" .
Friday, August 8, 2008 10:52 PM CDT August 11th August 8th Zahra and i am having a flue/bad allergies for last two days. It is just feel really nasty and feel like all my strength is drained away. Without being my self, all is a mess here. Bilal"s birthday is just couple of days away. it is on August 10th and he been counting the days and also reminding every one that how many days have left for him to be 9 years old. We are invited on Saturday by one of MPS parents for a MPS family gathering at their house. Their Daughter name is Julie and she is 13 years old. Last year i missed it but i am hoping to make it this year. I hope we all feel well by tomorrow. Ameen Allhamdulillah (All praise to The LORD), Girls are doing well these days. Their summer program ended 31st of July and now they are home having their summer break till september 1st. Yes, i am so busy here that i don't even have time to even comb my hair. Their routine these days is pretty flexible. Zahra and Abeerah sleep late but Khansa wake up early as always. Day start from breakfast then they relax in their play room and watch TV. Rest of the day just pass between diaper changing feeding, playing with them and some time taking them in the yard if weather is in 80s. There is not much to do for them out side these days. Jumping on trampoline been Zahra's favorite thing to do and she always go straight to the trampoline when she is out side but now she jump little and mostly sit on the trampoline. The day i have more strength, i take them on the swings. Abeerah love swinging. Some reason Zahra and Khansa are drooling way too much. I think it could be some issue with dental or teething. I had made an appointment with Dr. Jackson for all three girls to check it out. keeping them clean and dry from the drooling wetness, they go through quite of changing clothes and towels all day. My laundry is just never seems to be close to ending. I still have not find any one for help. Francy, A lady who i was counting on also find some other job. I am unable to step out side the house for any thing. Specially unable to go for grocery shopping which cause frustration when all needed stuff is all out. Ammar is still going for his summer program but only for 3 hours. A new therapist started to come home for Ammar for ABA therapy for him. I hope this can help him with his speech. He loves out door and can't let any chance pass when he can sneak out side and play with dirt. He is very energetic and full of life. He still having a huge issues sleeping at night. He is starting to get more interesting in books and like to watch different movies than he use to watch only dora or blues clues over and over and over again. As hard to handle boy he is as much he is cute too. He is total joy in our life. Since all girls quite down, He is filling in all the noise around here. If he is in school or sleeping, Things do not feel right. Zarrar really adore him. Khansa is still the same. She is taking extra calories and liquid through G tube. She have not gain any weight yet but i see little life is coming back in her and she looks around and giving her great eye contact but still cry each time i touch her in taking care of her. It seems like she is suffering with pain in her joints or bones. She have not smile in a very long time. She do not move her own. She get bed sores and needed to move her position constantly. Bilal is doing home study these days he is doing wonderful with his behavior. He helps me a lot and if he is in good mood, he play with his brother. Some times he shares with me his sadness of his siblings not talking and play with him like his friend's sibling does and that really hurt me deep. Only thing i can tell him that is how GOD wanted to be and he just keep praying for them, May be his prayers reach HIM and he can change things with his siblings. He learned to ride the bike and enjoying a lot riding on the road with other neighbor's kids. I caught him doing some stunts on the bike, make me really scared. But thats Bilal, who is fear less and loves to collect attention. Lately things been going good with girls. Other than swallowing down the pain i have to face watching them getting limited with their abilities, i am enjoying the time with my beautiful angels. I want to say thank you to all of you for your support and prayers to making us through our trail. As hard this road been emotionally and physically as much i am thinking and realizing our purpose here. These hardships had open my eyes and teach me so much about life. I can starting to understand how GOD made this world and how every thing works here. I know he made my special babies for some purpose and look down on earth for their care and He choose me for that. I feel blessed to have them in my life. To me, spite all the hardships it brings in every directions , at same time it is pleasure to have them and love them and do care for. I just tell my self facing a hard day that GOD think of me capable and strong to do his work, otherwise he would not choose me to give me 4 special need children. That give me a strength and give me the will to hide my pain and go on with a smile knowing he is watching over me and his reward will be really great.
Friday, July 25, 2008 1:53 AM CDT Thank you all for your support and prayers. Your Kind messages in our guest book, means a lot to us. Everyone is doing alright here and life is busy keeping up with 5 kids' needs. Time is like flying little faster these days. Night falls before i could able to finish every thing. Now since i have no help these days, house work is overwhelmed.
Friday, July 18, 2008 3:18 PM CDT Things are here going very well and i am so great full for that. Girls are doing well these days and since this house revolves around them, every thing seems great these days. When they are happy, we all are happy. May Allah continue giving us great days here. Ameen.
Saturday, July 5, 2008 5:46 PM CDT
Friday, June 20, 2008 2:49 AM CDT Thank you all for your prayers. Khansa's surgery went well. Recovery went great. Actually that was the most calmest recovery i ever have to dealt with. Getting up after anesthesia is always a challenge to hold down my MPS daughters and i always get browsed up with all the kicks and head bumps. I was amazed with my sweet Khansa. I stayed with Khansa over night in the hospital when Zarrar watch the rest of the kids at home. Carol(baby sitter) helped him till 10:00pm. He did a great job putting them to bed. He even learned the medications schedule. He is my hero. After coming home Khansa stayed cranky and cry with pain rest of the day. Also Abeerah came home from school gagging a lot. I stay beside them taking care each one. Both did very well today. I am happy Khansa is better now. All thanks to GOD. Khansa still eating soft foods by mouth. She takes a longer time to swallow. But i am giving all liquids by G-tube since she choke on liquids. So far all is well. I am hoping and praying that she can able to gain some weight. It worries me and i can't hold my tears when i look at her. Her back turn in to arch and she can't lay down on her back much. She does not move around her own or turn sides at night. Giving her bath is hardest time for me. She is like skin over bones. Her feet also turn quit in wards which gives her a lot of cramps and pains and she can't walk and stand her own any more. Khansa's Back Khansa, Zahra and Abeerah's feet. I hope this feeding tube helps her get some strength back and we can see her smiles and her face expressions again which been lost for some time now. Ameen Abeerah had a seizure on Monday morning while i was making Khansa ready for school. When i came back downstairs, Abeerah was upside down with face on the carpet. Her side of the face got carpet burn due to all the shacking and face rubbed against the carpet. I am thankfull that she recover from the seizure better than last times. Girls had a graduation ceremony in their school this week. Sad thing is that they were in different days and we only received one invitation so we were able to only make it to Abeerah's graduation. Since Khansa was going under surgery on her graduation day, so principle did gave Khansa's award the same day with Abeerah. It was great meeting every one at school. Zarrar and Bilal had planed to spend the weekend camping with their foot ball team "Ababeel" and this year families were going too. Zarrar been asking me to come along with them. First, thinking of the very hot weather which we had for some days and Khansa's drinking trouble and weakness, i did not want to go but couple of days before the camping date weather got better and khansa feel well so i decided to go with them. In couple of hours before the departure, I know how fast i did the packing all the needed stuff for 5 kids and 2 adults plus the needed bedding for every one. I am so happy that i was able to make it and able to spend my birthday at so beautiful place on June 14th. It was an amazing 2 days i had with my kids and with lot of other community peoples and some Zarrar's family members. I can't wait to share picture with you all but my camera charger is not be found. To download pictures, i need to charge the camera battery. i hope i will be able to do it soon and then i will post the pictures. Schools are closing on June 24th and summer program will start from July 1st. We are also changing Bilal and Ammar's school this year. I hope we can able to place them in right place to get them the help they need. We Also had meeting with behavioral to set up a behavior therapy for Ammar. I really pray for him to able to calm down and able to communicate.
Tuesday, June 17, 2008 7:45 AM CDT Please keep Khansa in your prayers today. She is going under surgery for feeding tube. She been having ups and downs with difficulty to swallow for some time. Past few weeks, she hardly drank enough liquid. Drs. Agree that it is time, she should get G tube placed so she can able to take some liquid in to keep her from getting dehydrated.
Saturday, June 7, 2008 0:14 AM CDT June 8th ------------------------------ Last week and this week went really busy here. So many appointments to follow that i feel like really lost in between. After getting back from SC, Abeerah suffer from bad Diarrhea and aspirating a lot specially during night time for some days. Diarrhea lead to diaper rash and it made her go through some painful time. She miss school the whole week. She is doing really great this week other than diarrhea is still around. She is on the same formula for long time and i am not sure why this is keep happening. Khansa is not doing well. My heart breaks each time i look at her. My sweet little girls turn really silent. She stopped smiling and i did not see any expression on her face for some weeks. She having a hard time with her swallowing. She is eating alright but taking a twice the time to swallow and some times choke in between. She have hard time drinking. She is taking very little liquid in. I am trying to keep her liquid going with dropper but she choke on second or third sip. she do not look well at all. Just sit and stare one direction and do not move her own. I took her to the Dr. and she think, its time to get her in OR for G-tube. Sooner or later we could end up in ER. So it is better to get that done before it turn emergency. Zahra is doing very well these days. She enjoys out doors a lot. Jumping on trampoline is her most favorite thing to do after getting back from school. We cherish her every smile and every hug from her and be thankful to Allah sending great days with her. Ammar who did Amazingly well on our trip to South Carolina but he made it up all after getting back home. He been behaving very active and some strange behavior issues going on with him at night. It is just stressing me out watching him growing in size and age but no improvement in communication. He gets in to every thing. I stop him from one place and he gets in to other. Keeping his clothes on is not fun. I put clothes on and he takes them off in no time. After talking to our case worker of mental health service through our insurance, I took him to psychologist but it did not went well since Ammar did not let me sit to answer the Dr.'s question. Since clinic was in Dr.'s home, Ammar tried to get in to every thing and i keep running after him. Dr. gave me an other appointment so he can talk to me without having Ammar there. Me and Zarrar made the appointment but Dr. was not any help in terms of getting him some services. He think we should work to get him into a better program. Dr. also suggest me and Zarrar to take therapy sessions with him for the burden we are dealing with. I am not sure how just talking to a strange person about my problems will help me in any way. Bilal is doing good but same old complains that he don't like his school. He spend full day at the musjid but not adjusting well. So for next year i am looking for a school where he can get better attention and able to adjust. Our Washing machine broke down doing the first load of laundry that we brought back from South Carolina. The entire week i really suffer with laundry situation when we wash here over 20 loads a week. After washing clothes with hands, i give a lot of credit to people who invent such a products to make our life easier. Zarrar did some running around to look for new and bigger one but unfortunately our basment door is too small to get it through it so we end up waiting for our turn of get it repaired. i had an IEP meeting for all three girls last Tuesday. Their case worker only mail me for two appointments so i did not made it to the first one which they decided to do it with out me and did for Khansa since her teacher and therapist had to leave for field trip. When i reach there, case worker went over briefly what is done and what need to be changed. It was really painful going through all the progress of the girls which is none. Each teacher and therapist talk about how much they have changed since last year. Khansa's report put me in tears. Abeerah's report was exciting but in reality she hardly came to school this entire year. Only days she is in school when she was doing great. But i know for sure her attention level and her smiles have increased. Some one can come closer to her without having eyes pulled out or hair, nose ears pulled or scratched face. She become very calm over this years after years and years of been very hyper and so quick in grabbing stuff where ever she pass through. It was nice meeting every one and i appreciate every one's hard work for all who been taking a good care for my 3 daughters this year. Girls graduation ceremony is next week. Abeerah will be going in classified six grade, khansa is in 5th and Zahra will be second grade. Schools are ending here on 24th of June. All 5 kids will be going for summer program.
Tuesday, May 27, 2008 12:55 AM CDT I know you all waiting to know about our trip to South Carolina. It was one of the greatest trip i had but unfortunately for very short period. First we were not sure if we able to make the trip since every one were sick here but after starting antibiotic, Kids looks better. We left NJ Friday early morning at 4:am. It is 12 hour drive from NJ to SC. Most of the traveling went great. Kids slept some and watch some TV. Zarrar did the driving and I stay busy in the back, changing diapers, give medication, feeding kids and help Abeerah who need to be aspirated. But last some hours of the trip turn into disaster. Ammar spill the whole gallon of apple juice on the van floor and made a puddle which area i use to change diapers. Our bags and some blankets got damage. Abeerah had bad diarrhea which turn big mess and with heat and no Ac made every kid go crazy and crying out loud. We thank GOD when we reach to the hotel. We met Leslie Philips there, A very young and beautiful girl who dedicated her self for helping out MPS families. She help me out taking kids to the room. We had two great rooms with Jacuzzi. Leslie help me change the kids. We all freshen up and Leslie Jurado came over to take us to her house. There we met Leslie's rest of the family which i know them by names but met first time. Such an amazing family. I was finally able to meet Izzy which i was dying to meet. She is really beautiful girl. Her Smiles just melt my heart. She is the whole reason we were there. Leslie start this organization to honor the life of her daughter Isabel who have sanfillipo syndrome like my daughters.
Sunday, May 25, 2008 12:47 AM CDT Just want to make a quick update here. Thank you for all of your prayers. We did made it to South Carolina on Friday evening. It is about 12 hours drive from New Jersey. We had a blast time on Saturday. We left South Carolina on Saturday night and reach safely back home Sunday afternoon. I have so much to share with you all. I will update soon with all details and pictures. Please check back soon.
Tuesday, May 20, 2008 11:29 PM CDT Need Urgent Prayers
Sunday, May 11, 2008 1:35 PM CDT Please join us in celebrating National MPS Awareness Day. Please take a moment to remember and pray for all those living with this disease, and their families. Please wear purple and/or your purple ribbon proudly in honor of the COURAGE of children with MPS disorders. _________________________________________________ May 11th First Happy Mother's day to all Mothers. I hope you have a special day today. This week went busy as always. Time and work around here don't match these days. I am so overwhelmed with stuff that need my attention and i feel i am lost in between. I got to find some way to put my head on the right direction. Abeerah had a couple of bad days start of the week. She had crying out loud episodes. She cry for 15-20 minutes with tears and then ok for little while then cry again. I am banging my head to figure out what is bothering her. Send her to school since she looks fine that morning but comes home crying with a note that she cry all day at school. Dr. think its behavioral and we should increase her Seraquil dose. Which i am not happy about it because Seraquil had a side effect of gaining weight and every ounce she gain is felt hard on my back when i have to carry her to 16 stairs up 2-3 times a day and 6 stairs outside putting her in the bus. I am happy she is better now and smiling a lot. Evening and nights don't go good. She chock and cough a lot. I also see during her sleep her pulse turn very weak. Some times i find her very still that i have to shake her to see if she is ok. Khansa is well and eating drinking fine but when you look at her she do not look fine. I get in tears when ever i am taking care of her. Specially her bath time, All her bones are sticking out and only skin is covering them. She is on high calories drink but don't seems making any difference. She don't smile at all. Drooling so much all the time. Can't able to turn her position with out help. Bilal, How much i worried about him. I do not know what to do to make him not to get in trouble at the musjid. He is so sweet some times and other times he is totally opposite. We are practicing to learn to ride the bicycle. Oh man! He do not have a good balance on the bike or standing on one leg. But hopefully keep up the practice will do. Zahra is my sweet heart. She is happy these day. She loves to jump on the trampoline. So sweet of her smiles when i put shoes on her and she knows that she will be going out. Some of her loud loud moments when she get upset staying indoor. She love to be around people. Ammar....He is too much. If i can just keep his clothes on him. He goes out with clothes and come back with out any thing on him. Other day i went to the bank and took him with me but he run away while i was in the line waiting. went to look for him and he came out without all the layers of clothes. I try to tape around his clothes, I pin then but no help. he takes all off. i sew some overalls for him and that is a great help but with him getting in to all kind of mess i need tons of those. He also learn to open that fence gate to get on the street and that put me on night mares. I am trying to be a hawk on him but i guess with my age i can't think that fast. He is growing in to big boy and that increase my worried of him not talking or communicating. where i see some improvements in his understanding there i see he can't say those words right that he use to say it fine. He learn his alphabets at age of 18th month but now he can't say them clearly. I want to say thanks to Karen who been an amazing support to us and comes to have some time to spend with Bilal. She is a beautiful person and i admire her for giving out her time for community work. She took me for fabric shopping and I really enjoy the long ride and the talk with her. As I love to work with my new fabrics but there i am so frustrated since my both sewing machine broke on me this week. As a mother my head is split in so many places and being worried for each one. I have started a bad stomach pains each time i think of my kids. First i thought may be i eat this or that but that is not it. Its the worries that i have hard time to digest it. I feel stomach sick all the time.
Tuesday, May 6, 2008 1:43 AM CDT I am going to make a very brief update today since some thing really wrong with my computer and it is working very very slow for some days and taking really long time to write a single sentence. Waiting for Zarrar to take a look and see what need to be fix.
Tuesday, April 29, 2008 0:50 AM CDT
Things were overwhelmed and kept me very busy during kids spring break. I did able to take the kids out to park and to the mall. but last some days Abeerah did not do well and we all just stayed home. Saturday start crazy but end up amazing. We were invited by our little Friends from Noor-ul-Iman school for pancake breakfast. I had no planes due to Abeerah not doing well till late Friday night we decided to go. Zarrar and i wanted to leave very early so we get there before 9am because it it over an hour drive away. With Abeerah's crying and trying to make hyper Ammar to sleep, i end up going to bed very late and very tired. I as hoping Zarrar will wake me up when he get back from work in the morning but he came home and fall a sleep to have some rest before the long drive. well....I woke up with a phone call from the School asking what time we are getting there. So i give my self a speed to make all kids ready and feeding breakfast to all. You must know in hurry every thing goes wrong. Abeerah pulled her feeding tube out and made a huge mess so she needed to wash up at the time when we started to load kids in the van. Printer won't print the directions. Before hitting highway had to turn around for Abeerah's connector tube which i forgot to pack. Then our GPS won't work and unable to get some one on the phone for direction so we turn around from the high way again and cancel to go. Since we all in the van so we head to the park other way from the school. Reach to the park and got a phone call from Maria and she insist if we come since all waiting for us. So again we start the journey. But got lost and back and fortth from gas stations and the phone call we made it there by 1:30pm. Felt really terrible since half of the people had left. All the girls welcome us so nicely. it was so nice that tons of hands there to helping me with kids. They took Bilal and Ammar out to play. Abeerah started to fuss. Very Nice sister Maria took me to pharmacy to get the medication for her. Then we were called for breakfast. We had given a ROYLE treatment. In a hall there was a huge table full with every thing for breakfast. All my kids were getting fed by sweet 8th grade students and i was able to eat all my own ON THE TABLE. So amazing. Don't happen to me often. I felt like a queen. I can not thank enough to all who made our evening so beautiful and for all the love and care they given to my kids. I can see how great it feels having friends support. I wish all can understand this that what as little as your smile can do to those who are in struggle. We had a wonderful time. By 4 pm we all ahead back home. Zarrar left to work after we reached home. Abeerah did not had a good rest of the evening. She cried time to time and then calm down for while then cry again. I continued with medications but seem like not much help. Some moments it felt like that it is her teething bothering her and some point its like some behavioral. Sunday, Abeerah slept late and when she wok up she stay calm but looked very weak. She drooling whole a lot. After breakfast Zarrar picked Mr. Adil up. He have a special need boy Jawad which i mention here before and i baby sit him time to time. We hire him for teaching Bilal. While he teach, i will be taking care his son. Mr. Adil is in need of help but our community fail again providing help to those in need. I am so sad on this part. I was taking care 5 special need kids. Abeerah was continuously keep chocking on her saliva. When i got a call from our neighbor that some Pit-bull dog attacking their kid. Zarrar and Mr Adil ran out side we call 911. It is so sad that two huge dogs attack together and little 7 years old boy hurt bad. Father try to help but he got also hurt. Ambulance taken them the hospital. Zarrar been back and forth to the hospital with Mr. Adil. Its been really sad here. Police catch the dogs and so the owner. They keeping the boy in the hospital for some days. Please pray for him. Father is the Imam(minister) of our musjid. Weather turned cold here again. By evening Abeerah and Khansa running a fever. And this morning Ammar also got cold. So kids stayed home today. Abeerah is not doing well. She is drooling a lot and coughing up a lot. Afternoon went ok. I had made plans to take our neighbors kids to the hospital so they able to see their brother who is going under surgery with dog bites and broke his arm from couple of places and parents are staying in the hospital. unlucky, Carol(babysitter) called for not coming in today. Neighbors were all ready to go so Zarrar watch the girls and Ammar. So i was able to g go out for an hour. Drs. want to keep the boy couple of more days to see if he gets any infection since there is no record of dogs had given the shots. Keep him in your prayers.
Thursday, April 24, 2008 1:42 AM CDT Quick update.
Thursday, April 17, 2008 2:24 PM CDT Zahra had some rough, Hyper and aggressive days. She looks uncomfortable, confuse and scared. Thank GOD for good weather here, Jumping on trampoline gives her some relief. And she is happy to be out in the back yard.
Wednesday, April 9, 2008 8:03 AM CDT ¤t "In the name of God, most Gracious, most Merciful". Abeerah had two seizures yesterday. She had one in middle of the night at 3am and other in afternoon. Both were about over minute long. So she does not have really bad after seizure effect like last couple of times but still she is not her self. Drooling non stop like water line had left open and body in continuously shaking. She is not moving at all and stay where ever and which ever position i leave her but she is looking around and aware of her surrounding. She been gagging a lot. Please pray for her. We had Little boy Jawad over yesterday who is here for treatment. He seems improved so much. He have gained lot of more weight and it is getting extremely difficult for father to move him around. He is in extreme need of your financial and moral support. Khansa having a little balance Issues. She can't sit well and always fall to the side. She can not stand her own any more. We start sending her to school in her wheel chairs from Monday. We pushed it for long since we don't have a ramp here and it needs quite a strength to go through the wheel chairs and the girls separately through our 6 front stairs every morning. But Khansa's condition getting worse was hurting her during getting her from the bus and putting her in the bus. It makes me really sad to see my sweet butterfly changing so much. Girls are doing well and I am very thankful for that. Abeerah been giving us a lot of her smiles lately. We had a great but very busy weekend. Saturday we were blessed with a great weather. Temperature was between 60-65. I had made the promise with Bilal for some times ago to taking him to the park when temperature goes above 60s then we will go. He been keep checking the temperature every day and happy to see the warm weather. After breakfast, made them all ready, load wheel chairs, carry them all to the van through our 6 painful front stairs, i hate when my back can't hold my own weight. But promise is promise. We made it to the park. Take the girls out. Bilal gathered so many ducks by feeding them bread which he sneaked from home which i bough this morning. Kids where so happy watching the ducks. All the old memories just came back to me when kids were young and i use to bring them here. We been coming here for long time and Abeerah, Khansa and zahra ran after ducks for years. It is painful to see them like this now. I try Zahra to get out of her chair and able to walk but she was in her hyper behavior with being very loud which brought lot of stares at us so i put her back in the stroller where she just bang her head back and forth to her back of the stroller. After we walk to other side of the park. I was pushing two strollers and it turned three when Bilal decide not to push Zahra any more. He wants to run around and have fun. Don't blame him. But With 3 strollers, Peoples just stop walking and stare at me like i am doing some thing horrible, some really even forgot to close their mouth. One lady came closer and say hello to the girls which made the girls happy. Kids were hungry so we walk far end to the food area and find out it was closed. Bilal and Ammar ran to the kids play area. MAN! it was packed with so many people and kids. Ammar saw the swing and ran and so is Bilal after him. In no time, I lost boys' sight and i got panic, should i leave the girls and look for them while Zahra doing her back and forth thing. I was worried that if Bilal will let go Ammar's hand then it could turn a night mare. Well Bilal amazed me and bring his brother back dragging him out of the crowed holding from his shirt who was trying his best to run away. Bilal! Masha Allah, what i do without him. I let Bilal go and play and find Ammar a swing to sit in. We walk back to the van an other mile. Pack the kids in the van, pick some food way back home. It was a great fun. At least boys were very tired and slept well. Sunday went busy with kids. Give kids baths. And cutting 4 moving kids' nails made me exhausted. I was tired and in lot of back pain but happy that we all had a great weakened together. Zahra been sweet but having some terrible hours of misery when she just not happy and so louder that she can be. Ammar is just too much to handle. He keeps me really on my knees cleaning after him. He have trouble sleeping at night and by the time he fall a sleep, entire room's lay out had turned upside down. Khansa's birthday is around the corner. She will be 10 on April 17th. She is not drinking well any more. I called the Dr. to make her an appointment but there is long waiting list. I hope they gives me date some thing sooner than after 4 month. Some of our MPS friends needs your prayers. They are going through some rough times. Jasmine is in the hospital fighting with pneumonia. Chase is back in ER. His Feeding tube came out. Poor boy going through so much. Isabel having a long seizures. Chip is struggling to breath.
Thursday, April 3, 2008 0:20 AM CDT Quick update-April 5th I am on my knees asking Allah for his mercy here. I am asking your kind prayers too because they helped in the past and means a lot to me. I been dealing with seizures, i get the chills just even with that word and never get use to them. I have always had a fear of Abeerah going through seizure and while i am not there for her. And that fear happened. At least thats what i believe had happened. Monday i hurt my back carrying the kids to the bus and had a really rough day due to that. At night Ammar kept me up very late. I did check on girls as usual couple of times at night. When i woke up in the morning my back was in lot of pain and i was unable to carry anything so i kept the girls home. I let them wake up their own. I keep checking on Abeerah and she was sleeping tight so i let her get her rest. By 11 am after 3 times checking, it did not seems usual so i try to wake her up but she was not responsive at all. I carry her down stairs and she let her body and head hang loose(not like her). She could not sit by her own, her body was shaking constantly, twitching of the eyes and Mouth foaming was keep drooling. That was the symptoms Abeerah been having after the seizures in past. It hit me hard that being so close by at next room to her but not there for her when some thing could go terribly wrong. Yesterday all day i watch my baby in suffering and my regret of could of.. should of... made the day really painful. I believe that i missed her hard breathing noises during seizure if there was one in between Ammar's clapping and laughing out loud in my ears or the intercom was set on too low since she been doing well for a while. I kept her home today. She looks the same other than was able to move her eyes around and turn her self when laying on the sofa. She was gagging and coughing up A lot today and i kept her feeding on a very slow speed. It seems like her recovery after the seizure is getting harder and longer. It is so hard to watch and gives me feeling sick in my stomach. My believe in GOD is strong and that is the only thing keeping me standing here. I had a appointment with Ammar's speech therapist today and we talk about different issues. She think Ammar had made a great progress since she sign up with him from last September. I would call it he just get back from the dive he took last year with their lack of therapist and no consistent staff and teacher. I want to thank Karen (Bilal's volunteer Teacher) who took me out to fabric store as we had made plane last week. I wanted to cancel it since Abeerah is not well, but Zarrar insisted that i should get out to take my mind some where else. He watch over Abeerah. Bilal also went with us. He had a great time wandering around with karen while i enjoyed looking through tons of fabrics. Thank you Karen for all the support you have bring to us. Your time with Bilal is priceless. He really enjoys your company and it means a lot to us. My back pain is getting worsen. Pain Med helps but for very little time. My kids are the world to me. And i want to take care of their every need and comfort but it is starting to hurt me so much that i became every much limited in pass couple of weeks. My every breath make this dua to Allah to give me strength and health to take care my precious angels my self as long they are here. I hear so much from people every day. For them, i don't regret a bit having them. I think my kids are beautiful. GOD made them perfect and send them here for some purpose and HE choose me to take care of them and i am happy to have them.
Monday, March 31, 2008 10:23 AM CDT Thanks to all of your prayers, Every one is feeling much better now. Zahra still have some loose BM going. She did great since last night and i am hoping she do better today.
Sunday, March 23, 2008 5:07 PM CDT Another quick update. Thursday 12:30 pm Quick update. wednesday, 2:55AM I think i spoke too soon when i said girls are doing great here. actually till Monday morning every thing was fine. Kids were doing good and all 4 went to school. Bilal start his study ok at home but by afternoon, My stomach start growling and Bilal complained not feeling too well. When i check, he was burning hot. Hour later Zarrar said he having a bad stomach pains. Ammar came back not well and went straight to bed. Girls came from school in bad condition. Abeerah had thrown up all over her self and running high fever. Zahra and Khansa was covered in Diarrhea all over. Bus driver said they did not feel good all day. It took me over hour to clean all up, put change of clothes and make them comfortable. Give them meds to take the fever down. By evening all 5 kids were laying down and sleeping. By night i had change many diapers. My self was having a very bad feelings of throw up and keep running to the bathroom and i did sat there time to time but nothing happened, just felt yucky. Tuesday all stayed home. Busy day for me. Keeping up with diapers, medications and cleaning on top of all the usual stuff. One old friend came over and told me this virus is going around and many families are feeling same way. I hope it goes away soon. Ameen. My computer had broke down and send out to shop for couple of days so i wanted to apologize all who i did not write back. Keep praying for my family to get better. Girls are doing well and it feels really good having them calm and happy. I am very thankful for that. But need prayers for Ammar. He is running a fever and diarrhea for last two days. He is keeping me very busy. I have to run after him all the times. He takes all his clothes and diaper off in every few minutes. On top open the window and stand in front of it. I think that is how he got the cold. Me and thank GOD for Bilal trying to keep his clothes on him to keep him stay warm. Due to his diarrhea and keep taking diaper off, keeping me on my knees to constant cleaning. Even with all the sickness and weakness going on but he did not slower down a bit. He is cute like a button. I hope he feels better soon.
Sunday, March 16, 2008 2:21 PM CDT Update Monday. Dear Readers. Thanks for coming here and checking on my daugters and rest of us. Need your prayers today for Abeerah. She is not doing well. She been crying out with tears since yesterday. First i thought it is behavior and due to the reason because her medications did not given her on time due to med problem with the pharmacy who took three days to prepare and tell last minute that they don't know how to compound them. Thanks to an old friend, Zuhra who made them and drop it off here and Thanks to Husna who ran and got her reflux medication. But even after the medications, she still been very upset. If she is not in her chair belt in, she hurt her self by throwing her self every direction. I am not sure what is bothering her. Her body is continuously shaking but no temperature. I am trying to every thing to comfort her. I do not want to end up in ER, especially on sunday. I hope she feels better soon. Holding her and carrying her here to there, my back is in so much pain and i am popping pain medication like a candy. I will update in details soon. Please do pray for one MPS family. Their son Chase who have MPS II(Hunter Syndrome)and he is not doing well and its been three weeks, he is in the hospital. I hope Drs. can find some answers to help him. Here is Chase's journal
Tuesday, March 11, 2008 4:26 AM CDT Sorry for not updating for while. Kids are well here but having some ups and downs here and there. My back been in so much pain lately. I can not stand for more than few minutes or sit or lay down. That had slow me down so much.
Tuesday, March 4, 2008 7:58 AM CST All praise to Allah. Girls are doing very well at this time. We had a great weekend. Visit from our little friends from NOOR-UL-IMAN school on saturday. They all are wonderful students. Its amaze me that they come from quite far to spend time with my family on saturday. They took Khansa, Zahra and Ammar out in the yard to walk around. They play with Bilal and then took him to the library.
Monday, February 25, 2008 9:54 AM CST Feb 27th. Feb 25th Need your prayers! Abeerah had a very scary seizure this morning. I was in the kitchen making breakfast when i heard some sounds. When i reach there to check on Abeerah, I found her face down on the carpet and having a seizure. I turn her over and her face had turned really blue and mucus was coming from her nose and mouth. She was not taking air in. After i clean it all, she was able to take in a big deep breath. I am not sure how long she been seizing before i got there. Seizure was lasted about 4 minutes long and stopped after giving her DIASTAT. I can be strong and all but watching seizure is way too much. I can't really watch my child going through this horrible thing. Each time she had seizure, i feel i had lost the ground under my feet and feel so helpless. Each time i look at my baby, my heart ache. What this ugly MPS have done to my sweet Abeerah. This week went really BBBBBBBUUUUUUUUUZZZZZZZZZZYYYYYYYYY. Kids been home for a whole week. From breakfast to lunch and dinner, tons of diaper changing and lot of cleaning kept me on my feet most of the day. Abeerah did not feel too good the entire week. Zarrar been sick and then Zahra and Abeerah got flue. Ammar start new thing taking his entire clothes off every 5 minutes and i keep putting back on and it goes on all day. But overall, i did enjoyed the relax time with my kids. I am very thankful each day i get with my sweet angels from heaven. Abeerah did not feel well the entire week. One thing to other. Poor girl have to face so much. She feels very uncomfortable due to her reflux. She did much better after increasing the dose but still shows some discomfort after each feeding.
Monday, February 18, 2008 2:59 PM CST Feb 21st Journal Feb 18th journal First I want to say a great thanks to my great friend Leslie who is a mother of a MPS child but even dealing with her own heart ache, she always ready to help me out. I can not thank her enough for all the help she had given to me flying from SC here and watching my kids when we were in the hospital with Abeerah and could not find any one to help us. Thank you Leslie. You are an amazing person. Isabel's journal Past week had some ups and downs with kids. But the good news is that finally we find a lady for help. Her name is Fracie. She seems very nice. She have a lot to learn how to take care each one of the girl. But she is picking up fast. We had a busy weekend. Saturday, We had a visit from NOOR-UL-IMAN school's 8th grade students with one parent. They have to do some hours of community help for their graduation. We had them coming 2 years ago which was arrange by a one student's MOM Suzanne and they came over regularly every other saturday for two hours for some months. But last year we lost all contact with them. I was very sad on that. It was nice to have a great little friends around. But again this year Suzanne's other daughter Leila in 8th grade and she wants to continue with the visit. She arranging a team for every other saturday to visit us again. It is so nice of them. Thank you guys. It was so nice to see them and catch up where we left over. Kids stay some hours and girls helped me with my daughters. Boys played with Bilal then some football out side. It was nice to have them over. Same time Zarrar bring some students from the musjid and our new 4 young neighbors visited us too. So it was house full of kids. Bilal had a great time. Abeerah had some trouble in the afternoon with a very hyper behavior all of sudden. Suzanne help me hold her down but after giving Seraquil she calm down for little while. By the evening she was back to very hyper and bouncing every where. Trashing her head to the walls and to the floor. I could not hold her without getting hurt. I tries every thing to help her but could not understand what is really bothering her. She did not sleep and just out of control most of the night. Watching your child in pain and not knowing what to do is just break you up. I am happy when she finally fall a sleep and slept for some hours. Sunday she did well till the evening but couple of hours she was again in a wild behavior. I do not know if she had swollen some thing and that causing her stomach pain. I know she is teething her molars as well. I hope she feels better soon. Zarrar had his friends over on sunday. Kids did well. We all just stay in and relax. This week kids are having a winter break. It is going to be a very busy week. Keep praying for us. Your prayers and support is very much needed here and appreciated. Bilal asked me for the maning of our family's last name. Some peoples did ask and some of you must wonder about my last name BEG. This will explain some.
Sunday, February 10, 2008 1:53 AM CST Update Feb 11th. Feb 9th First thanks to you for the nice messages left in the guest book. Your words are a great help in our struggling days. Needs your prayers for Abeerah. She is not doing well. Thursday she had a seizure in school and another seizure at home while i was changing her diaper. Since then she is not been her self. She is hardly moving, looking around or making any noise. Today she just throw her self down and did not even want to sit at all. I tried to make her sit but she fall back on the ground again. Quite a difficult day for me. I been sad and feel pain. Every thing made me cry. I hope Abeerah feels better tomorrow.
Friday, February 1, 2008 12:52 AM CST Feb 4th. ____________________________________ FEB 1st. Busy busy and busy here like always. Finally kids and myself are feeling much better from the horrible flue. These hard days always make me be very thankful to GOD for the good days he send upon us. Bad days make me realize the value of good days. I count them as HIS blessing. Zahra still have some runny nose and Bilal still have a little cough left. I have not gain my total strength back yet. I am happy kids are better and going to school. Which gives me some time to rest and prepare for the evening when they get back home. Abeerah had a seizure in school on monday which i was told by nurse at the end of the day. This is the first time Abeerah had a seizure in school. Nurse said it was for very short time and she did not fall a sleep after that. It sound like the same way she had it at home about week ago. When she get back home from school, She did not had a vision and just keep staring at me like just looking through me. She did not had much balance on her right side and keep falling on her right side. Felt very uncomfortable. I had to clean her eye every few minutes. I kept her home for next day and let her sleep late. She felt much better when she woke up. We had a great day together and she gave me lot of smiles. Last few days she had gagged a lot. Some of her behavior make me really worried about her. She have gain 3 more pound in last two weeks. I am trying to control her diet because the way her weight is going, it is getting difficult for me to carry her up and down the stairs. Khansa doing great. She is more quite lately. Eating and drinking alright this week. She had lost 3 pound since last month and lost her one tooth this week during her teeth brushing. she is hardly standing up and just hang in my arms when i try to make her stand. Getting her from the bus is another story. Every day i had to grab my heart when i see aids trying to get her from the bus. They almost drop her to the ground each day trying to make her stand and trying to avoid her weight on them . I ask them many time to wait till i come back after taking one girl inside but they always try to give me all 3 girls at once on my door so they can drive away fast. How can i do that when all need help to stand. Finally Zarrar had to yell at the bus driver to make him understand. As soon as wheel chair come back after repair from the airplane damage then i am going to send khansa also in the wheel chair like Abeerah does. Because i can not take the way she taken off the bus. Zahra is well but have changing so much lately. I have very hard time taking in, her changing so fast. I did not see her smile this whole week. She cry couple of times with tears. She gets very loud and jumpy for some hours a day without taking a break between. I am not sure those are her happy moments or she is complaining. But those moments are not easy for rest of us when no one can even hear them selves. We have to shout to talk to each other. I Do enjoy her when she come and give me hug and try to sit in my lap. I really thankful for those moment and really cherish her each hug. She is growing in to a big girl now. Choke on her food every feeding at least once. Ammar is doing so much better. I am working really hard to make his sleeping schedule right. It went really well this week. He starting to sleep through the night which is a huge accomplishment. He have not make a very big mess since i am on top of his head when he is on the move but still sneak in to small messes. Mostly these days h is going after the food and eat all snacks which is kept for school. I see a huge regress in his language which i feel stomach sick when i think of it. He is not even saying his alphabets right which he had learned age of 20 months. I call the case worker but she said there is no more therapy he can get than twice a week. Need lots of prayers for him. Bilal is doing well. This week he been very cranky and upset on every little thing. He have hard time adjusting in the musjid. Older kids bother him because they knows he will never tell the teacher about it but he comes home with upset face that kids hates him. We started to pick him up earlier right after he get done with his lesson. I been teaching him home. I don't see its going that well. He hesitate to write. He enjoy his time with his volunteer teacher karen. I feel really sad for him and trying to find some fun things to do. Still looking desperately for a help around the house. house work is really overwhelmed for me. I can not finish all in 24 hours. Please to people living around my area, if you can help me out here to find a lady for help as a part time job, I will really appreciate that. Keep praying for us. Your prayers and support is very much needed here and appreciated.
Thursday, January 24, 2008 2:44 AM CST Quick Update. Its been busy busy and very tiring some days. All 5 kids and myself been down with flue. No one made it to school since Monday. Taking care each one, keeping up with medications, checking temperature, gave me the feeling of a hospital here. Kids been cranky and i been with out of strength, Just dragging myself through this ugly flue thing. There should be a warning to flue "MOM, Can't get sick"or "Take one at a time". I am very happy that Zarrar been ok and making to work alright, other wise it will be 7 kids down because Zarrar is equal to 2 kids when he gets sick. Don't get wrong idea from this picture about Ammar been calm. He was calm alright as in this picture but only for some moments, as soon as medication kick in, he was up on his feet again jumping and destroying things here and there. Cough, runny nose, fever, shivering, tiredness are the common symptoms between all of us. I had sever head ache all times and standing up made me really dizzy. Everything been upside down and house is just a huge mess. But Thank Allah, Today was a better day. Zarrar made his special tea with who knows what in it, which gave me lot of sweat head to toe and i was on my feet vacuuming, doing the laundry and all the kids stuff. And i cook every ones favorite dinner too. End of the day, i was able to give every one hot baths. By night, I think i over did it and went back to sick again. Now i have to wait for the morning to have Zarrar's herbal tea again when he gets back from work. Please keep my family in your prayers. There is something you can do today to help children and families effected by Autism. The band, Five for Fighting, is generously donating $0.49 to Autism Speaks each time this video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal. watch this video
Thursday, January 17, 2008 11:41 PM CST Jan 20th, Update Jan 19th, Update Abeerah running a fever since two days now. She is very uncomfortable with her breathing due to her runny nose. Please pray for her to get better soon and other kids don't catch it. Thank you for stopping by here to check on girls and writing in the guest book with your kind words. Your support and prayers means a lot to us and help us make it through each day. Thank you for being here with us. I am sorry for unable to write much here these days. I am overwhelmed with kids needs, house work, teaching Bilal and chasing after Ammar. Kids are doing great these days. I am very very thankful for girls are doing amazingly well compare to past horrible winters. I hope and pray that it stay that way. Abeerah started some coughing/choking and gagging here and there but did not came to need of suctioning her. She did had a mild seizure two days ago. Mostly seizures she had during her sleep but this happen when she was awake and active. I was feeding Khansa when i saw her shaking and curling up. I hold her down and few second later she stopped and instead of going in to sleep she freaked out and started to cry out loud. I try to comfort her. Crying took very short time and after she got busy watching TV. Gave her seizure med and she was ok for rest of the evening. (The top main picture is few moment before the seizure) She have been gaining weight and become very active. Non stop trying to stand up but does falls. I am always worried of her getting hurt when she is not in her chair belt in. Khansa and Zahra are doing well. Khansa have her some crying moments but mostly she is quite and happy. Eating and drinking well this week. Zahra is a very sweet girl. I am so thankful for her smiles and her hugs. If she is not in the moments of trying her loudest voice and babbling with out a break OR A BREATH, she stand behind the child safety door and her eyes just follow me where ever i go. Some times she wave at me.( heart melting). She is my princess. I want to spend more time with her when she is on her calm side. I take her in the kitchen with me and sat her on the high chair to let her watch me cook. She loves giving out hugs but they will be for few second long but don't worry she comes back for another short hug. AMMAR. As much i can write about him, it won't be enough to explain what i am dealing with each day. I though MPS is horrible disease but Autism is just worn me out physically and emotionally. Ammar is one very hyper boy. He have energy of 4 kids and always up to some thing to destroy. Like this weeks specials are..... he spread sugar all over on the kitchen floor emptying big jar of sugar. He took salt and sugar and mix them together. Toilet clog 2 times this week. Bilal's toys and video game destroyed. My lotion got spreader on the curtains. and many many more. He is very good at emptying my dresser's 6 drawers in no time. Two days ago, I was cleaning up the kitchen and i had to run with stomach upset, left him watching TV with sisters but when i return shortly, he was standing on top of the counter and spraying "fantastic with bleach" all over the kitchen. I try to get it and i got sprayed on my favorite shirt. Took me hours and hours to get rid of that bleach from every corner of the kitchen. He always see the moments when i am not looking or busy diaper changing. He don't sleep at night and hit me any thing he gets hold of it if i fall a sleep. And on top all he is very cute and thats how he get away with every thing. My this week mission......I am looking to get a custom made higher metal safety gate for the kitchen to keep Ammar out of the kitchen. Have to be atleast 5 feet tall. I am also desperately looking for some one for help. I am in need of a baby sitter. I am spending so much time these days looking and looking. The day kids make it to school, i get so tired making them ready that can't do much after that and when they don't go to school, i have to stay with them. Can't take them with me since no heat in the van. I have not stepped out side other than throwing the garbage or putting the kids in the bus. Its been a long time since i shop. I have not done kids winter clothes shopping and each day i have really difficulty making them ready for school when i have to go through the clothes pile to find the warm clothes. Speaking of shopping, i want to say special thanks to Sister Fatima. She been an amazing help to me, delivering me soy milk regularly and that is a huge help since 4 my kids drinks soy milk and i am always running out. Please keep praying for my family. Also need your prayers for our strength which i need it so much these days.
Wednesday, January 9, 2008 4:03 AM CST I have not update here for some time. Speaking of Time, This is the thing i don't have these days. Trying to do every thing by myself and keep doing it but end of the day it just seems nothing get done. Keep doing laundry but by night the pile looks the same. I keep cleaning all day here and there and by night house looks as messy as it was. Keep throwing garbage out but by the end of the day it looks the same all trash can full. Each day is a same routine for me feel like i am going in a circle. Ok enough about me. Abeerah is doing great these days. She is improving day by day. She started this new thing which i am not sure what is it. She been making some noises with her mouth like sucking her saliva in hard. She repeat it every few second. First I thought she is breathing air hard so I call the nurse and hospice nurse came with couple of other people and after checking she think that she might be getting her 12 year molars and thats why she suctioning her salvia. I really don't see thats could make her do that. After that they all sat down and told me that they seen great improvements in Abeerah and according to their policy, kid have to be getting worse to stay on that program so they are taking her off from the program. where i am very thankful for Abeerah's great recovery there i am sad for loosing all the benefit we receive from Hospice. Calling a nurse home was a luxury thing to me. Now taking her to doctor will be a question when i have no baby sitter these days. Medication drop off on the door was great service. They finally started to give us the diapers for her but that will no longer be coming. I hope and pray that Abeerah continue to improve so i don't need any of that stuff to worry about. Khansa is drinking well this week. I put her on formula which is very thick and she have easy time swallowing that than milk. She still whinny and cry out loud with pain in her feet. I have to change her position couple of times at night when she get cramps in her feet sitting in same position. I talk to couple of other parents and they think putting cast will not help her for long run. I just can take watching her feet turning so fast inward and she is in so much pain. Zahra had couple of bad nights. She woke up middle of the night and just cry out with tears and seems scared so i kept her in my room with lights on. I am not sure what bother her but she is so happy and exited on my bed and do not want to go back to sleep. Ammar also join her in jumping and we end up staying up very late. Falling a sleep just before morning, I missed the girls bus twice. So girls been spending whole a lot of time at home. Ammar is doing same. No communication and no talking. Nothing change about him. He is still very very hyper, full of energy and always up to some thing to destroy. We stop him from one place and he just end up in other and so on. I need many eyes and couple of extra hands, just keep up with Ammar. Putting him to sleep at night is always a struggle. Bilal is doing ok. Start complaining about every thing. Start liking to eat more which was always my problem with him that he don't eat much . I guess that is part of growing in to big boy. Need your prayers. I am in need of them so much.
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