It is difficult to start writing about Isa, she is the most incredible person in my life, my greatest achievement, but I thought I would write this blog for her, so she could read it in the future and see how far she has come.
Isa is now exactly 13 months, she was born the 30th of March, 2012 she was 2,760kg and she was perfect. I had the most amazing pregnancy, I felt great the whole time, I ate good, I did yoga up to the day before she was born and I thought I was gonna have a “super baby”, I thought she was gonna be the most healthy baby around, that she was gonna be walking really early, that she was gonna be perfect the rest of her life, and I mean, I have 5 siblings, all with super healthy babies, and I had made sure that my pregnancy was good too, so to be honest, I never ever worried about her health, I knew she was gonna be a strong, healthy baby.
And she was, the first 5 months of her life she was developing great, in her monthly appointments with her nurse she was doing great, reaching her weight charts, milestones and so on, no problems whatsoever. But then, slowly, everything started changing. When she was around 6 months, she started doing “something” that we, Nicklas and I, didn’t know exactly what it was, we saw it during different times and moments, you would mostly see it when she was eating her breakfast. She started doing these “nods”, really quick ones and they would come with a slightly movement on her eyes too, her eyes would go up a little bit, all this would happen in 1 or 2 seconds, if you were not looking at her you would miss it. It was not noticeable, the first time I saw it I thought she was afraid of something, she had just started squinting, so we thought that it was probably because of that, that she was trying to focus with her eyes. During the same period, we started noticing that she was not using her left hand as much as her right hand. This “episodes” would come at the beginning maybe once a day, after 2 months, one day, they started to come more often. I can not describe the feeling of knowing that “something is not right”, there is no pain like this one. I am a google freak, so I started searching on the web for all her symptoms, I came across with this videos on youtube about babies having seizures and then “it” hit me, she was having seizures, tiny ones, but those had to be seizures, I even came across a kind of seizures called Infantile spams and all I read about it was terrible, I started feeling so scared. All my research on internet was made in one hour, Nicklas was teaching a class and when everybody had left the studio I talked to him. I saw panic in his eyes, we called her nurse to tell her about these things happening more often (she knew about them, but she said it was probably nothing) and she said we should go to “Barnakuten” (children ER) and so we did. It didn’t take so long until a doctor saw Isa, we explained her situation and we had taped one of her episodes on my phone so I showed it to the doctor, we explained that we were afraid of her having Infantile spasms. All she could do at that moment was to schedule a EEG (Electroencephalography). We were just leaving Sweden to go to Barcelona for 5 days, so she said we would get the appointment for the EEG when we were back. During our trip to Barcelona she was very tired, sleeping a lot and having the episodes during the day. We finally got back to Uppsala and got her appointment for the EEG, but it was schedule for another month and we couldn’t wait another month with her like that, the episodes were now coming a lot, we decided to start writing down the time when she was having one, and we found our selves with a list of at least 40 a day, so we went to Barnakuten again. This time there was Neurologist around and after watching Isa’s videos during the episodes and looking at her, she decided to do an emergency EEG, she was afraid it was Infantile spasms, that was December 30th, and I think that was the day that we saw Isa in her worst condition, she was having so many episodes and those would make her so tired and weak. Nicklas had to leave to go to the studio so I stayed in the hospital with Isa and the EEG began, they had to glue these electrodes around her head, she was crying so much during that moment, (they didn’t have the right glue, so they glued them with this super glue that was stocked on her hair for a long time) she was so tired that she fell asleep right away.
They did the EEG for 40 minutes and then we were sent to a room on the Children Neurological department. Nicklas came back to the hospital at night and the neurologist Eva came to us to tell us what the EEG was showing. She said it was epilepsy, but the good thing was that it didn’t seem to be Infantile spasms, that was a big relief. She couldn’t see what kind of epilepsy it was or why she wasn’t moving her left hand as much as the right one, so she schedule a MRI (Magnetic resonance imaging) for a few days after. That night Isa started her treatment for epilepsy. A dose of Keppra, a clear grape flavor liquid, that she would eventually learn to hate and refuse to drink. That night we slept in the hospital, my sweet little Isa fell asleep completely tired.
We spent the whole week in the hospital, we got permission to go home on new year’s eve and then come back. On Wednesday 2nd of January she got a time to do her MRI, they had to put anesthesia because she had to stay still for 40 minutes. A nurse and I took her to the MRI on her crib, there they put the anesthesia and I saw how she was fighting to fall asleep, I couldn’t help to start crying, why her?, why my baby?… I was feeling both scared and relieved to see that she was getting help and that we would soon find out what was going on in her brain.
That same day we got the results from the MRI, the neurologist and all her team came to our room to tell us the diagnosis for Isa. This is the moment when your life changes, when everything gets an answer and when nothing is gonna be the same ever again. The MRI she said, showed a malformation on almost the whole right side of her brain, on the cerebral cortex, which is the outer sheet of the brain, the cerebral cortex has an S shape and Isa’s cortex is smoother on the right side, this explains why she can not use so good her left arm, because the right side of the brain controls the left side of the body. She said that she couldn’t tell when this happened but it was during her development in the uterus.
So what does this means? you think… What’s gonna happen to her?, how is she going to grow and develop? etc, etc, 1000 questions cross your mind. And then slowly you start to get answers and slowly start understanding (or trying to) and suddenly, everything that you thought changes, suddenly, Isa is seeing different doctors, having many appointments at the hospital, taking medication, starting physiotherapy, getting more EEG’s, different doses of medication, suddenly this small boll starts rolling and you can not control it anymore. She is a perfect normal girl, but she can not use her left side as her right.
Suddenly Isa is a baby with special needs.
And so this journey begins, Isa is taking another medication now for the epilepsy, because the first one didn’t work and made her so irritable all the time, so now, she takes Topimax 1-1/2 pills in the morning and 1-3/4 at night. She is delayed in some of her milestones due to her weak left side, so at 13 months she can not crawl or walk, she can sit, but that is pretty much all she can, she gets Physical Therapy at Habilitering in Uppsala and in Move and Walk in Stockholm to help her walk and improve in all her motor development, because of her condition on her brain, she has a shorter left side of her body, which means shorter leg and arm, around 1,5 cm, so she would need some orthopedic shoes soon to help her balance the difference when she tries to walk. She also wears eyeglasses because she squints and that is also related to the brain malformation. So yes, I know it seems a lot, but really it doesn’t feel a lot anymore, she is the best thing in our world, and although I know we are just starting, that the real challenges are there to come, I don’t care, I’m here, she has us, we are here for her, like I said one day to my sister Karen, I don’t care about all I have to go through with her, it’s just that I don’t want her to suffer, I don’t want kids making fun of her because she can not walk good or anything, but we will try our best to keep her going, to make her self confident, to give her the tools that we can, so she can be the best she can.
This is just a little bit of her story, I hope you stick around and get to see how we go through it and how she improves in her motor development day by day, she has already improved a lot and we are so proud of her.
We love you Isa.