Assalamualaikum wbt.

Ties II

Assalamualaikum wbt.

" u yg vvygjhh gugh gj       fv                 "
typed by my baby.

Blogging hasn't become any easier with this lil one chewing on the laptop wire, craving for attention, with a parent unable to distract him.

6 weeks since.

His tremors and speech improved, alhamdulillah. though they still couldn't come out with diagnosis, merely 'midbrain inflammation'. Lots of things going on at a time, I couldn't keep up without the people around me.

The first week of mr hubs admission was hard. I had to drive from Coventry to Birmingham everyday, and I was exhausted. Needed to entertain in laws, made sure they're well taken care of while mr hubs in the hospital, tried to give my best for my son's development. Too much at a time, I decided to find a place to stay in Birmingham, closer to the hospital.

For the first few days in Birmimgham, we stayed in one kakak's house, and the next, a doctor friend offered her house. And we've been staying till then.

The words spread out about mr hubs admission, and for the second and third week (during my in laws' stay), the Malaysian community took turn cooking for us. I know few of them, but the rest I don't. It's a blessing to have them helping out though they didn't even know me before. And such circumstance brought us together.

It drained my energy going back and forth to the ward and running errands by myself. After two weeks of admission, I decided to leave lil one to my MIL for about 3 hours (before the next feed), in order to be with mr hubs during the ward round.

Doctors said that the inflammation is affecting the memory part hence the details mentioned to him were blurry - I needed to be there for first-hand info. And since my baby was wheezing at the time, he was on inhaler and antibiotic, I even had to rush him to A&E due to bronchilitis - the doctor said not to bring him to the hospital anymore. So the arrangement was - leaving lo to MIL while I walked to the hospital (20 mins) and joined the ward rounds; in the evening was in laws' turn to visit, in other words, it's mommy and baby's quality time.

Three weeks had passed, it's time for the in laws to go back home, Malaysia. SIL offered to stay just a lil bit longer, but after we had a thorough thought about it, off she went. So I asked the Malaysian community who would be willing to take care of my baby 3 hours/day and we're willing to pay reasonable charges. And one of them offered willingly, free of charge.

I've never met that kakak before. The first time was when I left my baby with her. Though I was a bit nervous to leave him alone with someone I didn't even knew, I pray that Allah will take care of my baby whenever, wherever and with whoever.

The first hospital admission due to neurological symptoms last year had introduced me to one kakak who lives near the hospital. Both she and her husband allow me to park my car in front of their house, so I can walk to the ward (10-15 mins). Instead of having to pay for parking fees, I got to park for free.

Our expenses and spending could've been bigger if not because of them. And my optimism could've been crushed to ashes without their supports.

What more could I ask for oh Allah, You made things easy for us despite the challenges we're facing.

I want to give my best, in whatever challenges I'm facing. I hope Allah always allow me to give my all to my son, to my husband, to my family, friends and the ummah in whatever costs.

(To be continued)

Ties I

It really breaks your heart seeing your loved one unable to text, write, feed himself and even struggle to speak.

Been three weeks since being admitted, months since the symptoms came back.

Teach me and guide me to be optimistic oh Allah.

The All-Knowing IV

Assalamualaikum wbt.

It's been a while, and hadn't got a chance to update. Since husband's asleep, and since i received a news about a friend's dad had a stroke and she needs urgent help financially, i thought i'd help by writing this. Click here,
Where did i last left off? I'd better write before i lost everything on those depressing moments. Thought i still and will always remember em, but i guess bitter moments are better forgotten, and only the good side of em should be kept and remained. Hence ive started to forget the details.
His symptoms did not worsen, he could walk, a lil bit stable alhamdulillah. But other symptoms did not seem to improve. Perhaps the 3-day steroid drip had started to kick in. Since he seemed like a bit stable, though the effects of LP hadn't gone away, we thought we could try asking for a day leave on sunday from the doctor. What we had in mind, was, i could bring him from the hospital for just a visit to a friend's house just for a couple of hours. Thought that it'd be a good practice for him to walk a lil bit further(?). Glad that the doctor didn't allow us to. Mannn, what was i thinking?! He was unable to walk not because of his legs, but because of the brain! How can he practice when his brain couldnt even control. 
I came very early without anyone's permission, like a boss. Lucky that i hadnt got caught for violating the visiting hours. I guess because my husband's in private room, so me being there early wasn't a bother to anyone. 
Anyway, since we were only spending time in the room, and i thought he's fit enough, i  asked him for just a quick coffee date at costa downstairs (still in the hospital building). This time, he walked. Without bringing a wheelchair with us. Just as we were about to have seats, he said he felt intense headache and wished to be back in the room as soon as we could. So i decided to bring him upstairs and cancel the so called date. While waiting for lift, he vomitted that right instant. A lot. Even if he tried to control, he couldn't. There was a nurse waiting to go upstairs at the same time, rushed to help. A lady, with just even a ply of tissue came to me, handed the tissue and said, 'this is all i have'. Obviously the tissue wasnt enough. But the thought of helping soothed me, a bit. I felt awful. It was a bad idea to bring him down. 
Then, a nurse from his ward came down with a wheelchair to pick him up after the nurse at the lift area called her.
He had a second MRI. Well, that was quick. They just had the steroid in for a couple of days. The MRI results showed that there was a slight reduction on the inflammation. Alhamdulillah. The steroid works, it just needs time before they can fully kicking in because we're dealing with brain here. And being a human, I was somehow expecting his symptoms to fully improved within just days.
We asked the neurologist in charge that morning to explain on the MRI images. He explained about the inflammation and we had to wait for other diagnosis.They had him for eye tests, with neuroopthalmologist assessing. It took hours for the tests. From the neuroopthalmologists point of view, the brain inflammation didn't reduce that much. They still couldn't find the reason to the inflammation.
A junior doctor had him tested for metal exposure, since maybe they suspected that my husband's phd work might be the cause of the swelling. He also mentioned that an 
endocrinologist would come and assessed my husband since they found from the MRI that his pituitary gland is a bit bulky.
My husband had his third MRI. This time specifically for the pituitary gland part. They just had to make sure everything's fine. Plus they stil couldn't find the cause. Neurologist in charge said may be my husband needed to undergo biopsy and may be, he had to undergo an operation so that they can take his brain cells to be tested. Gulp.
I came a bit late but i came just about time for Friday prayers. Since the porter that we requested hadn't come to pick him up, and to send him to the chapel, i decided to accompany my husband to the prayer hall before heading for lunch. I was planning to come back afterwards but instead, he came to me right after he had his jumuah prayer. Hmm impressive.
Seeing that he's walking a lot more stable, had made me asking the doctor when will he be discharged. Heh. His slurring speech improved compared to last time.a but tremors are still there. Yes, still.
Oh and also on Saturday, he treated me with a cup of hot chocolate downstairs! Glad that everything went well so far alhamdulillah.
We had a picnic by the hospital compound. We sat on the green grass, the weather couldn't even be better. I guess with his current condition, i was a lot more confident to bring him home and take care of him myself. Though the thought of the same thing to recur is still there. Oh and btw he was transferred to a bay and no longer was he in the private room. A good sign huh? We speculated that he might not need the private room anymore now that he's more stable. Plus it might be a sign of he's gonna be discharged soon.
Monday, discharded day!
Early in the morning, during ward round, the specialist said that he was good to go. But still needs follow ups. Yeay, he's an outpatient. No more depressing space and moments alhamdulillah. Recoverring period can be continued at home. Btw, the doctor still couldnt provide with exCt diagnosis hence they couldnt say much. It's now a wait-and-see period. They couldnt conclude something exact yet, hence they couldnt provide the exact treatment. 

The All-Knowing III

Tuesday 30 Ramadhan- 1 syawal

From the MRI, the doctors could tell that theres an inflammation at the midbrain. But they couldnt rely on just the brain slices taken through the MRI. They had to reconfirm, that it IS inflammation, then only they could start on the treatment; which explained why they seemed to just let the symptoms be. They didnt know the cause, hence they needed to do lumbar puncture to take cerebral spinal fluid (CSF) ; or brain juice they call it, to have it tested.

Please bear with all the medical terms.

My husband underwent the lumbar puncture (LP) that day. I couldnt stand seeing him in pain of which three doctors tried taking the fluid from his spine (about six attempts), but they said it's an empty tap. They decided to stop doing it, and gave him a rest before they could try again the next day, depending on the condition of the bruises and swellings as a result of the attempts. We're well-informed that the procedure was a difficult one, we didnt blame them.

Better luck next day.

I had my husband's baju melayu ironed before coming to visit him, so that he could wear them for eid. In UK, no one could stay overnight with patients, unless the patients are below 12. I was refused on my request to stay overnight straight on my face the first day he was admitted. But well, for eid, I requested to come early in the morning (visiting hours 1430-1930 btw).

Wednesday it's eid!

I came early. We had requested a porter to push my husband's on a wheelchair to the chapel downstairs. They had eid prayer in the hospital alhamdulillah, so we took the opportunity to join them.

It was such an experience praying with staffs who didnt manage to have leave on eid just to take care of patients, and with patients who in what conditions theyre in, still struggling to perform eid prayer. I love that the imam recited verses from albaqrah of which the meaning,

"And We will surely test you with something of fear and hunger and a loss of wealth and lives and fruits, but give good tidings to the patient, Who, when disaster strikes them, say, "Indeed we belong to Allah , and indeed to Him we will return." Those are the ones upon whom are blessings from their Lord and mercy. And it is those who are the [rightly] guided." 2:155-157

and also, the duas after the eid prayer were very meaningful, I cried.

We had the doctor informed that we'll be back after an hour, so we used the the remaining time to call our families and to take pictures (tho the pics were taken in hospital. He wasnt allowed to leave the building definitely).

Happy moment was over, and it was the scary part; LP. The doctor that carried out LP for the day was a different one. He tried twice, but he managed to get the fluid out tho it took him approximately an hour and a half. Alhamdulillah.

They had to do several tests using the fluid and the results for each test might take different time span before they'll be out. But that evening, we're told that it's now confirmed that it IS, midbrain inflammatory, just that they couldnt tell us the cause of it.

My husband's given steroid drip right after they knew the disease. So he needed to be on the IV drip for three consecutive days. Well, not for the whole 24 hours actually, just for about an hour each day.

Thursday 2nd eid(?)

One of the effects of LP is backpain. So my husband found it hard to sit and even lying down. Every position wasnt feel right, but it was worth bearing such pain. May Allah wipe his sins, and mine.

We were visited by friends who kept motivating and praying for us. Everyday, since the first day he was admitted, we had visitors. They brought chocolates, eid dishes and even books to keep us occupied. And most importantly, they brought with them duas. That's all I ask for.

We even had friends coming all the way from Preston (approx 3 hours drive) and also from Oxford just to visit my husband. May Allah reward all friends, who came to visit, who are planning to visit and even friends whom prayers are with us wherever they are. May all of us find the silver linings behind what happened.

Friday 3rd eid(?)

The symptoms didnt worsen, Alhamdulillah. My husband could walk, but still unstable. His slurring speech improved, people can start hearing him saying words clearly. He still had tremors that he sometimes spilled food/drinks, shaking when holding things, find it hard to text and had a bad handwriting. But Alhamdulillah, the symptoms didnt worsen, at least.

In the evening, we were visited by my husband's friend, who's a Syrian. I love the way he reminded us of Allah, and having him to visit us was a blessing. His visit reminded me about the Syrians, who lost their family members and who arent guaranteed the next second breath (everyone's not guaranteed, just that we always forget about such fact. Theyre reminded all the time by the situation theyre currently in).

He'll have a second MRI insyaAllah next week, and hopefully the steroid drip works and the disease wont recur. The consultant (specialist) didnt say that he can fully recover but with Allah's will, insyaAllah he will.

Please keep us in your duas. People around the world who know us, am sure are praying for us. Am sure you readers too. I cant thank you enough.

The All-Knowing II

Saturday 27-28 ramadhan

It's 10 am in the morning, the time for my halaqah. Everyone in the halaqah was assigned tasks to share in the circle. One of them shared about taqwa, of which, is the output that we all muslims should aim for by the end of ramadhan. She also said that the input should be iman, so we should reflect ourselves whether or not we've entered ramadhan with good iman? And then only the process is fasting - and the biggest question; do we have the right input and process before we can actually attain taqwa?

oh. Perhaps Allah wants to help us attain taqwa hence this test.

When it was time (one of the halaqah agenda) to share about our own conditions and all.... I decided to share about my husband's condition as ive been keeping my worries to myself too long. To be honest I had know idea what to do, I'm not a medical student not to mention, nor a doctor. I cried out of grief, telling them my worries. Two of my halaqahmates are doctors so they suggested us to go to the Accidents & Emergency (A&E) dept straight away and we can even call ambulance to get there. Packed our clothes and off to the hospital.

His imbalance worsen.

After the medical staff assessed him and had him gone through CT scan, they asked us to go back home as the results look normal and wait for the scheduled appointment w the neurologist next week; just wait for a text confirming the appointment and if we didnt hear anything from them by wed, call them.

But that didnt soothe my worries at all. Doctor friends suggested that we go to a better hosp as we werent supposed to be sent home with his deteriorating condition.

That night, my husband had slurred speech and tremors even more frequent. I couldnt sleep, I wanted to make sure he kept breathing.

Sunday 28-29 ramadhan
We went to A&E at the Queen's Elizabeth (QE) Hospital, Birmingham early in the morning. This time, I insisted the doctor to get my husband checked by neurologist that same day. After a few checkups, and a worth wait, a neurologist came to see him. She noticed his imbalance and slurred speech as the symptoms become more persistent and permanent. So she got him warded to be further assessed and diagnosed, she wasnt sure how long will he be adimtted.

In the evening, another neurologist came with the first one. This time, I guess he was the consultant, cause he mentioned, 'My registrar said......'. Anyway, at the time they were still clueless about what mr hub experiencing. They needed him to have MRI scan to get a better picture of whats going on as the second CT scan done in QE, indicated the brain's normal, too.

Its been a very emotional day, but at least i know he's now taken care of (tho I still wanna make sure he's alright myself). I was also informed that in QE, there'll be a several teams (neurologists, radiologists etc) that'll get involve- a lil relief there.

Hye baby, daddy isnt well. Am sorry if mommy forgot to eat well cos most of the time mommy forgot about eating. Please bear with mommy for few more days, am sure daddy'll be alright and he's gonna take good care of both of us as soon as he's back, okay? In the meantime, take all the nutrition you need from mommy. Mommy'll try my best to take good care of us, but please forgive me if i do forget how to, sometimes. Please pray for our lil family as well, and we cant wait to see you. InsyaAllah by that time, daddy'll be back, able to hold you and athan to you. Am sure you'll be as strong as your daddy, as optimist, as cheerful, as empathetic, as he is.

Monday 29-30 ramadhan
He was woken up to have MRI early in the morning. From the MRI, neurologists said that there may be a midbrain inflammatory. It wasnt confirmed yet, they need to do further tests to rule out any other possibilities and they also need to wait for a report on the MRI from the radiologists. So he may have to stay in the hospital for another few weeks.

I just realized that his handwriting had worsen since a month ago. But at the time I thought he's not really in the mood to write (tho he looked like he's too focus while he's writing).

The symptoms became even more frequent and persistent. Friends now have started to notice his slurred speech. But insyaAllah he'll recover as nothing's impossible with Allah's will. Have faith, nsmg.

Im glad that we've been married long enough for me to be able to differentiate his normal condition and the symptoms before its too late. Glad that he's now married that he has his wife that stays 24/7 with him and be able to notice all the symptoms. Glad that at least, he has his wife to look after him in whatever condition he's in. Thank you Allah for all Your best plans. and O Allah please strengthen our iman and our family ties, and please give all of us a strong heart.

Please keep your duas coming, readers. Thank you.

The All-Knowing

Wednesday 24-25 ramadhan
Our car broke down. We're just about to go to the prayer hall n iktikaf there. Great, allah has better plans for sure. Wesupposed to help delivering iftar meals there, but we couldn't. Instead, allah showed me, my husband isn't well. Yes, isn't.

Thursday 25-26 ramadhan
Mr husband tried to claim a breakdown cover that we thought we bought. But hmm, we actually didn't. His two friends came to help, but neither knew whats wrong w the car. One said that the car battery's still in good condition, so he reckoned that we refill the fuel tank manually, just in case the fuel metre didn't function the way it should. Well, no harm trying.

As i needed to dry up our clothes at the uni, why not refill a bottle with fuel at the same time so that we can fill the car's tank later? We didnt haveany other options but to walk. Easy peasy, i thought. Little did i knew, not for my husband.

As we walked that evening, i realised he always lost his balance when walking, he sometimes had difficulties in speech, he trembled when he's tryna hold something and he fell down the stairs twice. Which, made me cried that instant. I dont usually cry in public, but that moment i didnt give a damn about who's watching. broke into tears like so bad.

I dont wanna lose anyone, not my husband.

I remember seeing him losing balance before, to the extent where i'm so afraid leaving him alone, not even in the toilet. Such fear, made me decided to accompany him to the uni the next day. What should i say? He wouldn't let me if it's just for his sake. Instead, i told him that i need to buy things in tesco (near uni), but honestly, I didn't have anything in mind.

Friday 26-27 ramadhan
Walking to uni was hard for him. But that didn't just end there. After jumuah prayer, he said he felt very dizzy, so we decided to go to the uni nhs to try our luck to walk in, seeing a doctor regarding his health. The doctor that we'd seen said nothing serious about his health, perhaps the symptoms came from his ears, causing imbalance. Perhaps. He prescribed few meds to be consumed. But when my husband consumed the meds, he seemed like he couldn't even walk. The journey from tesco to the prayer hall took ages, and seeing him, i burst into tears even more. What kind of wife i am? I should be his source of strengths, but I wasn't.

That guy, who, when i cried that day and moment, recited a verse, mujadalah: 1 to me.
Mujadalah, a surah that i was trying hard to memorize, a surah that first memorized with my dear husband. That same verse, he also recited when he found it hard to pujuk me when i merajuk. I melted, he didn't know. He'll know after this post. So what, i love him. There, I've said it.

We decided to iktikaf at the prayer hall as it's the 27th night. It started with iftar, followed by tarawikh. Tarawikh imam recited, arrahman. Fabiaayyi aalaai robbi kuma tukazziban..... After all that He gave and gives, cant you see nsmg? One of my favourite ayah in arrahman is the 70th verse, which is why my skypename was followed by 5570 number. And the imam reminded me of this ayah... I wanna be one of the women mentioned. That day, the tarawikh were very meaningful to me. I told Allah everything though i knew He already knew as He's watching and listening all the time. He knew. But i wanna tell Him everything.

Thinking of my husband's condition, made me think twice about staying for the night. I wanna see him right in front of me, and make sure He's alright. But one thing held me back. Allah above all and it was the night where I should seek refuge in Him and seek His help. La hawla wala quwwata illa billah.

O Allah, please teach and train me to be optimist with what You have for me in the future. And o Allah, the Most Gracious, please reward my husband abundantly, give him the highest jannah for his patience in dealing w me. I beg You.

And readers, if you happen to read this, please make duas for us. I don't usually write about my life this open, but today, i hope that i can get you readers to pray for his wellbeing as well. Thank you.

Just us

Baby, now it's just us.
I promise 
to take good care of myself
And carry you inside me for the remaining months.
Daddy isnt here,
It's just us.
It's okay,
we'll meet him later.
He said he's just a call away,
But it's more complicated than that.
He's got work to do,
And mommy will do just fine,
as long as i have you.
So keep breathing my tiny tot,
It's just us
And mommy needs you.