Journal

Thursday, June 4, 2009 0:26 AM CDT

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

First Thing first, my mother's day went great. I spend all day with my kids. Weather was perfect that day so we all spend morning in the backyard and enjoy our time together and then i took them to our favorite spot by the water in the park where i use to take them when they were very little. I missed Bilal till evening since he was with his father cutting down his uncle's tree.




I loved all the presents received from my kids. I am really thankful for my beautiful children. They all very special to me. I count each day as a blessing to be with them. I can't imagine my life without them.

For MPS awareness Day, give out some cards and ribbon. I had a small party at my house on Saturday. We celebrate the day with purple ribbons, cards, balloons and purple icing cupcakes. We pray for all our MPS kids around the world to find a cure for this horrible disease sooner so no child have to suffer any more from MPS.


We had Islamic games on memorial day weekend. MPS awareness booth was also set up by Noor-ul-Iman school's children. They did an amazing job getting MPS awareness among 1000s of people by distributing flayers and ribbons. It was so nice to see so many wearing purple ribbon for our kids. Kids had a great day out. We had a great time watching games. Zarrar won Gold medal in archery and my uncle received silver in table tennis. And Bilal came on second place in Table tennis also but again there was only two kids in his age group.


Since Ammar is having a very aggressive behavior time to time since last two months. Hitting and biting out of frustration specially his sisters. Lately it had increased so much. Living under one roof, and trying to keep your children a part is so difficult. We never know what is next move Ammar will make. One minute happy laughing Ammar so gentle with his sister, all sudden will scream out loud and bite any one front of him specially his sisters been his biggest target. Trying to keep them safe from him any way i can but he is too clever and find his way to reach them. Taking them to the back yard together or just travel in the car together become a challenge for me not knowing what he will do next when he can come out of his seat belt.

I install double child safety door to keep him out but he find the way to get in. Girls school notice the bite mark and call to warn us that next time they will call DYFS. Since it been a huge struggle to keeping him away from the girls. For the love of TV and AC in girls room, he like to spend time in that room and trying to get in any way he can. I been spending hours on the phone to find any help from any where to over come his aggressive behavior. Get him more therapies and programs for him. Also trying to get in the bottom of what school been doing for him.
His getting in to every thing and keeping me busy thing is still on. Daily i go through so much cleaning after him. Nothing is safe here from him. Every time i get busy with the girls, i know i have some thing big after ward to deal with.


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



Tayyaba Beg

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

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