Story of 7 to 10 months "The worst nightmare begins!"
It has been very hard for me to write this chapter of Yussuf's life. I guess I wasn t sure how to express myself and explain what happened clearly. Anyways, I ll give it a shot and just start from the beginning.

Aug 2006, Yussuf was then about 6 months old. I was kind of getting used to his special needs and we were more or less getting into a routine that helped us go through the days. I was thinking that life was getting somewhat better and not as stressful as when Yussuf first came home from the hospital (I guess I was dreaming !!)

Yussuf also started teething and his tiny small bottom teeth started to show. He looked soo cute and we were soo happy to see his cute tiny teeth. We were thinking that at least he had his teeth ontime and he wasn t gonna be delayed there too !! It turned out that those cute tiny teeth were only a start to a nightmare that would never end !!

I think that the first time I started noticing a problem was when I introduced him to pureed vegetables and fruits. I noticed he would just scream suddenly in the middle of the feed. I had no idea why he was screaming. His dietician told me that he probably didn t like this vegetable or the other, and that he would get used to it with time. Anyways, I heard many theories from different people of where that sudden screaming would come from, but none of them seemed to be the reason.

One day, I was holding Yussuf and somehow I noticed a huge ulcer inside his bottom lip. I got scared and I didn t know what was that. I tried to contact his pediatrician as soon as I could and after I managed to get hold of her and I described to her what I saw, she told me that there was nothing I should worry about and that in a couple of days, the ulcer would probably go away on its own.

I started observing yussuf more and more and I tried different experiences with him to see why he continued to scream while I was feeding him and to see why his ulcer was just growing day after day. Finally, I noticed that he was biting soo hard on his lips suddenly during his feeds. So, I had finally discovered why he was crying during his feeds and why the ulcer was only getting bigger with the continuous injuries it was receiving from the biting. So it wasn t the new vegetables taste that was bothering him and it wasn t his plastic bib that was making him very uncomfortable during his feeds and it wasn t his type of spoon&&.

After this discovery, I started a new cycle with Yussuf. Me rushing Yussuf to see a doctor every couple of days and ask them the same questions: Where did the ulcer came from and how to get rid of it and why Yussuf is biting his lips. I would come home every time with the same answers: We don t know where the ucler came from, it should heal in a couple of days and we don t know why he is biting his lips. At that time, even going out of my home was a huuuuuuuge deal for me between Yussuf s G tube feeds that needed to be done every 2 hours at home and between my breast milk pumping that also needed to be done every 2 hours at home. Getting an appointment with any of those doctors was a struggle on its own !! weeks were passing by and Yussuf s teeth were coming out more and more and his biting was increasing and happening any time of the day and not only during his feeds and his ulcer was just getting bigger and bigger and deeper and more painful.

By that time, I had visited every single doctor that you could imagine. Yussuf s case was known in almost every department of Sick Kids Hospital and no one knew what was going on or how to solve it. They never saw something like this before. I remembered screaming to all those doctors that Yussuf needed a physical barrier between his bottom lip and his teeth and that was the only way his ulcer would heal. Yussuf s bottom lip was covered by that time by the ulcer. I saw Yussuf taking off pieces of his lip literally and bleeding every time and screaming from pain and I couldn t do anything to help him. His bottom lip was really disappearing. All this was happening between Yussuf s million home appointments of different therapies. It was really getting out of my hand, so I had decided to stop all his home appointments and therapies, to stop all his oral feeds and feed him only through the G tube and put all my energy towards this huge problem. I had also decided to hold Yussuf 24 hours in my hand and keep the pacifier inside his mouth by force so that he would bite on it instead of biting his lip. It was a crazy idea that drove me to insanity, but I had no choice. Yussuf was still very stiff at that time and holding him bent was the hardest thing to do and pushing him to have the pacifier 24 hours, including the nights, despite his non stop crying and screaming was &.... ( I can t find the right word to describe how hard was those days !!).

Anyways, finally two persons decided to do something to help. One was his feeding therapist in sick kids, along with the OT in the plastic surgery department in sick kids hospital. They helped me came with a way to hold the pacifier in Yussuf s mouth without me holding it 24 hours in his mouth so that it doesn t fall. That idea had to be improved over time in order to work properly and Yussuf ended up having a mask covering all his face and head in order to hold the pacifier automatically inside his mouth 24 hours. At a certain time, I had forgotten how his face looked like, since it was always covered by this mask !! This solution did help bring me back from insanity and did help decrease Yussuf s biting for a while. Unfortunately, after that little while, Yussuf managed to find a way to bite his lip, even with the pacifier inside his mouth. So we were back to square one again !!

These two OT s again did something great to help. They managed to talk to the head of plastic surgery in sick kids hospital so that he could see Yussuf. Normally I would have to wait at least one year in order to see him !!! So he saw Yussuf and he decided to do a biopsy on Yussuf s lip the following week in order to see where did the ulcer came from. By that time, I knew already that the ulcer started from the biting, but we had to make sure that it was not coming from some kind of virus. Eventually, the biopsy was done to only confirm what I knew already: All this was happening with this unctrolled sudden biting that Yussuf did very randomly during the day or the night.

The doctors solution for this phenomena that they had never seen before was to extract all of Yussuf s teeth. That so called solution was no solution for me and it didn t make sense to me at all !!! By that time, Yussuf s bottom lip was only worse and worse to the point I couldn t even look at it directly. It was all bloody, yellowish and he was only making it worse every second that passes by. I was told already that even if his lip healed, it would never go back to normal. Here goes another shock to me !! Yussuf s face was kind of the only normal thing on him. I always used to calm myself and said: at least he has a very cute face and a beautiful smile. Now even that was disappearing: His face was covered by this ugly smelly mask to hold the pacifier in and his bottom lip was soo disgusting that you would think a shark gave it a big bite !!!

I think one of the worst days was when we brought him from his biopsy (a small surgery to cut a piece of the lip and test it in the lab for viruses). His lip was already bad enough with the surgery and suddenly he gave it a hard bite and took another piece out of his lip. He was in sooooooo much pain and he cried soo much and we were watching his lip bleed without being able to do anything. That day, I learned that all those big doctors wouldn t help me with anything at all and that I should turn to my creator and ask him for help alone, because there is nothing impossible for God !! So I started to pray during the night and cried with all the pain in my heart and asked God to send me help. I was at the edge of my patience and at the edge of my sanity. I was very hopeless after seeing doctor after doctor and every time, I thought this appointment would solve the problem or this doctor would solve the problem, only to be shocked by each one refusing to help me or offering to only extract all of Yussuf s teeth as a solution .

Shortly after my night prayers, one old british women who used to come volunteer in my home and played with yussuf while I was busy doing something else offered to take me to the shopping mall in her car. So we went all three of us to the mall and I left her playing around with Yussuf in the mall, while I went around some stores. I was determined to find a solution to this problem. I always knew that Yussuf needed a physical barrier between his lip and his teeth and I was determined to buy whatever came to my mind that could serve that purpose. Somehow, God directed me to the dollar store and to the toys section and there I found dracula plastic teeth . This was around November, not too far after Halloween. It clicked right away in my head that this could be the barrier I was looking for. Eventually, after making many changes to those plastic scary teeth, it worked !!! Yes, a scary dracula teeth from the dollar store made in china solved the problem that all those huuuuuge doctors couldn t solve. It took Yussuf time to get used to this new mouth guard inside his mouth. But at that time, I didn t really care about Yussuf crying from discomfort of some new thing in his mouth, as much as I cared about Yussuf stopping the biting and the bleeding that gave him even worse pain !

The dentists and the orthodentists at Sick Kids Hospital couldn t believe that this $1 piece of plastic solved the problem they were trying to solve for a long time. They thought I was a genius and very creative !! But I am definitely no genius, nor a creative person. I know that God answered my prayers and He directed me to the solution.

One more fight was still waiting for me though !! I was trying to convince those dentists and orthodentists to make a similar mouth guard for Yussuf, but with a medical material that is safer and professionally done and not some plastic made in china that could have been made with some dangerous chemicals. It was another big struggle, as they were afraid Yussuf would swallow that piece or it would hurt him in any way. I fought so hard and had meetings after meetings with the head of dentistry and the head of orthodentistry.

Finally after seeing that the dollar store mouth guard has worked for a long period and after making me sign a paper that I take full responsibility of anything that happens to Yussuf, they made a mouth guard for me.

Unfortunatelly, the professional mouth guard didn t help Yussuf and it needed to be modified every day and there was no way I would have been able to visit Sick Kids every day and be able to get appointments there whenever I wanted. So at the end, I gave up on making a professional mouth guard and I just sticked to the dollar store mouth guard !

I knew that this mouth guard was only a temporarily solution and that the nightmare was far from being over, but at least it would get dormant for a while to allow Yussuf to heal his damaged lip a bit and to allow him to start his oral feeds and his therapies again.

This experience has been by far the worst and the hardest since Yussuf was born. It exceeded all the stress I had when Yussuf came home for the first time from the hospital or anything else that I could have imagined. It sounded like a very tiny problem: Yussuf bites his lips . However, what appears to be a tiny problem from far ended up damaging Yussuf s lip forever, affected his oral feeds to the point I had to stop all of it for a long time and had to train Yussuf all over again later on to eat orally, and also affected his physiotherapy very badly and brought him back to square one. I wouldn t even mention the amount of pain he used to feel every time he had an uncontrolled bite on his lip.

I have to confess though that this experience taught me a very good lesson that I would never forget. It taught me to count on God and God only in every matter in my life. I mean I knew that already, but I think I got drifted away from this concept a little bit when I was seeing all those big doctors as saviours of Yussuf from this biting problem. God wanted to show me that no doctor could help me, no matter how big he was and no matter how big is the hospital he works at. God wanted to show me that He is soo powerful that he can send us a solution for a huuuge problem from a dollar store if He wants to !!!

This experience also showed me more about the dark side of our health system in Canada. No doctor cared really about Yussuf s problem. They were all scared to touch such a young baby and no body wanted to take responsibility. I could t believe that they asked me to extract all of Yussuf s teeth as a so called solution !! I don t think they were even bothering themselves to try to find a real solution. As I have mentioned above, I knew almost right away that the only solution is some kind of physical barrier between the lip and the teeth, but no doctor listened to me and I didn t trust myself enough to try to do something about it right away. Now I definitely learned that I am Yussuf s only advocate and that I should trust myself more in the future and listen to my instincts more. Nobody knows Yussuf more than me and I can t expect anybody else to know how to help him more than me.

As usual, I can t conclude this chapter of Yussuf s story without thanking some special people who helped me a lot during this extremely hard period. Thank you Bouchra for being my dentist assistant . You were there for me every time I needed you to hold the flash light on Yussuf s mouth, every time I needed to modify his mouth guard using my amazing dentistry tool: the box cutter . Thank you Marwa for coming every day during that period to help me feed Yussuf and to help me stay SANE !! Thank you God again for answering my prayers and for giving me strength and patience to overcome all the difficulties that come my way.