2

Do you ever feel like a bad mother?

Sometimes I do and it breaks my heart. I believe that most of us grow up not wanting to make the same mistakes that our mother made with us, those things that hurt us, those things that we as kids said to ourselves “I will never do that to my kids”. I had a few of those sentences in my mind, that’s for sure. My mum was a hard one, she meant good, as most of us, but she hurt us many times, not  just me, but all of her kids. I’m the youngest of her 6 kids, so in a way, my older sisters and brothers where always trying to protect me and my sister Karen from mum, they did a great job, as much as they could. I wouldn’t say that I had an easy childhood, because I didn’t, my parents divorced when I was 6 and my mum took me to live with her, I loved my father, very much, we all did, he was a great man. It broke my heart when I had to go and live in another city, away from dad, I used to look at my friends parents and wished my parents were happy together, but they weren’t. My mum had a tough childhood too I guess and she was tough on us. My sister Karen and I escaped from home as soon as we could and we spent a few years hiding from her, until eventually we met again and made peace. But mum did something very good, she raised 6 kids that loved each other like nothing else. We love each other, every time I pick up the phone to talk with one of my siblings, all you can hear is us laughing. My relationship with my mum is good now, mostly because I have been living across the atlantic for 9 years, she is old now too, so we all pretend that nothing happened and try to be good kids, taking care of her. Don’t get me wrong, as much as she was tough, when she was in a good state of mind she was wonderful, she gave us a lot of good things and worked her ass off (together with my dad) to give us a good life (money wise), the best education and the luxury to travel a lot.

Anyways… Sometimes I feel like a bad mum and I wonder how Isa would look back and remember those times when I don’t live up to her expectations as a mum. She is growing up too and being a toddler doesn’t make it easier.

To Isa:

Chiquita, you know I write this blog for you, and sometime in the future when you read this, I want you to understand that I love you, that those times when you were little and Ella was stealing my attention from you, I was trying my best to keep an eye and an ear close to you so I wouldn’t miss any moment with you. That those times when you wanted to be in my arms but my arms had Ella trying to sleep I couldn’t just drop her and pick you up. That those times when I spent time with you training and you didn’t want to train and you would cry and cry and I would feel terribly guilty for pushing you to do something difficult for your body, I meant good, all I wanted was to help you. That all those times I started crying when you wanted me while I couldn’t help you I was crying because it made me feel awful not to be able to make you happy every single second of your life.

Te amo,

Mamá

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1

Shorter leg or not?

Isa had her appointment with the orthopedic last Thursday, last time we met him was a year ago, at that time he said that the difference between Isa’s legs was about 1cm and that we should wait a year until we met again and see how the difference was looking by then. Well, we met him last Thursday and after checking Isa he came to the conclusion that the difference was just a few millimeters and as he said, everybody has a few millimeters difference in between their legs.  And we thought … how can that be so? When she walks and when you look at her legs it feels like the difference is more than just a few millimeters, you can see how one leg is just shorter, not just a few millimeters. The answer he had, was that as the left side of her body is weaker she doesn’t have the strength to stretch the leg completely.

Okay, hearing that her leg is not shorter makes me feel better, now, we just need to focus on her training on a different way.

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5

Still alive

I can’t believe how fast time is going and I feel like I can’t keep up with the blog, that’s definitely not what I want, but the days go by and I can’t seem to find the time to write, or when I have the time I have no inspiration to write. I won´t even try to catch up with everything that has happened during these months, I will just go ahead and try to write what is going on right now.

Isa is big, and when I say that she is big, I mean that she has grown up so much! It happened rightt in front of my eyes and I didn’t notice but all of a sudden she is so tall and her face looks different, it feels like the baby escaped right through my fingers while I was pregnant with Ella, even now, just after the summer her teachers at day care said that she grew up so much during the summer. She is a little girl now and with this comes what it feels like a whole new person. She is very stubborn, which I really like and it feels like that stubbornness can come very handy with her special needs, she knows what she wants and that’s it.

She has developed so much in many different ways, but I think the biggest change that we have seen is mentally, is like something has shifted and now she understands what you say, she understands what you are asking and she gives you answers, with words, sign language or pointing, but she now understands and that makes the communication so much easier. She is also stronger in her body, can’t yet walk by herself, but she is getting there, slowly but getting there, she can do daily stuff without help now, like eating with a spoon or fork, grab a glass of water with both hands and drink by herself. That alone makes lunch time so much more fun for her, she loves being independent and we love that too. She decides now what she wants to wear or not to wear. She loves her “big sister” role and tries to take care of Ella as much as possible, it’s becoming so much fun to see them interact. Ella is now 5 months and she is such a strong baby, it’s been amazing for Nicklas and I to see this baby doing all this things that Isa never did or that it took so much longer to do. Ella is almost crawling! I mean, crawling is something that Isa can’t do and to see this tiny person doing it amazes us so much, we are enjoying so much every milestone she reaches and Isa loves her and wants to do everything like Ella.

Isa has been having more ABM sessions, she had 4 just last week and now is going to have 2 session every two weeks. So far this year she has taken a total of 20 sessions and we can see changes on her every time she has one. She had X-rays on her hips a week ago and she has an appointment with the orthopedic this Thursday, we want to check the legs again, she has been using the AFO’s but I haven’t seen much change in her walking with them. She had an EEG sometime in May and we continue with the same medication. She has an appointment with the eye doctor next Monday to check if the squinting has improved.

Overall she has a lot going on like usual, but we are happy with the way everything is moving forward, she loves day care, she loves kids and socializing even when she can’t communicate verbally, words are coming out more and more and her sign language is getting better, they also started with sign language at day care and now every kid has its own sign to identify them.

We had a nice summer and now I hope I can start blogging more often again!

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5

Follow up

It feels like forever since a wrote a post, but let’s just say that life has been a bit “busy” and it is just now that I find the time to sit and write.

There has been a lot going on here, with Isa, Ella, home, work etc… But everything is going good. I never posted anything about Isa’s AFO’s, she got them right after Ella was born, so that makes it around 3 months ago, I remember it was just a week or so after Ella came and my hormones were all over the place, so the first time we tried them on and saw her walking around on them, I started crying, I couldn’t hold myself, but once again, my hormones were playing a hard time on me, so, that feeling is long gone. They haven’t been perfect, after she got them, they had been fixed a few times, a little bit of trimming here and there, but it seems like they are good now.

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It also feels like she can communicate a bit more now, she is still not putting words together but a word comes out here and there, she does understand both Spanish and Swedish at home, since I just speak Spanish to her and Nicklas Swedish. She just surprises us with a random word everyday and then she doesn’t use it again. She has some favorite word in sign language that she likes to use over and over and she’s starting to say her name in sign language too.

We haven’t been really happy with her new eye glasses, she is squinting with them, something that she didn’t do with her last pair, she has a check up soon and let’s see how it goes, it was quite a nightmare last time when she got her eyes checked, I almost cried just looking at the ordeal she was going through but we will see how it goes this time.

She got 4 ABM sessions 2 weeks ago and will get 4 more in 2 weeks… I will write a post about this soon.

She got an EEG last month, we get the results next Friday, we are hoping to lower the dose on her medication, but we will see.

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She has been a very good sister to Ella, she just loves her and wants to be all over her. She’s quite rough though, so we have to always have an eye on her when she with Ella. She just loves to hug her and kiss her and likes to pull Ella’s hair and pull her socks off 🙂

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Ella has been such a joy, she’s just so calm and smiles all the time, she loves to get attention and just starts talking and smiling non stop. She is also very strong, she’s turning 3 months on Saturday and can almost roll on to her belly, it’s gonna be so much fun to see her develop and enjoy all the stages and milestones that Isa couldn’t reach at the same age.

Isa had her summer festival at day care yesterday, it was so much fun, she loves attention so you could see how much she was enjoying to sing in front of all the parents. We have been really lucky finding this day care for her, all the teachers and principal have been such a great help to us and Isa, she absolutely loves to go there everyday and that just feels amazing, they care so much about her and about learning more and more to be able to help her in everything she needs.

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4

Four days of ABM

The day finally came for us to go back to Söderhamn for Isa’s Anat Baniel’s sessions, 4 days having 2 sessions a day. The weather was kind of ok in Sweden until just 4 days before I had to go, then… boom! the snow and the freaking cold arrived, just what I didn’t want. I’m heavy enough at this moment to top it up with a huge jacket, scarf, gloves, snow boots etc… and then Isa, with a winter overall, boots, hat, gloves etc… but we made it, it was good and we got a lot of help from Jane to drive us back and forth from the hotel to her house and so on every day.

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We arrived on Monday and Isa had her first session at 10:45am followed by a 1-1/2hr break for her to eat and sleep and then we continued with the second session. Jane was kind enough to fix a room for Isa to sleep there since the weather was not nice to go out for a walk.

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During the sessions on her first day, Jane was working a lot on teaching Isa to sit by herself, she has been trying and trying but no luck yet to sit without help, Jane was helping her to use her head weight to come up. That day in the afternoon, while we were at the hotel, she sat down by herself for the first time in her life, I was so excited for her, this gives her a bit more independence and you could see how happy she was with her new trick. I had to take a video and send it to Nicklas, I felt so proud of her, she makes me proud everyday with all the little achievements.

The days went by kind of fast, although by the third day I was ready to go back home and eat something coming out from my kitchen, crappy food was the worst part of our trip but Isa enjoyed her sessions and I hope we can see some really good results as the days go by. Jane also recommended that it would be a good idea to include some sign language with Isa, so she can be able to communicate sooner, we had already started with some sign language, but after she said it we have been really putting our heads into it and try to remember to use it as much as possible, she does know how to use it to tell us she wants to “sleep” and I think she has been using the sign “drink” I think she has been trying to sign Mama, (although she can “say” Mama) but she is mixing it with “blowing a kiss” since it’s kind of similar, but we will see. We downloaded a good app and are trying to learn a few words here and there, the daily stuff.

She finally had the appointment with the dietician and we were happy to find out that she put on almost a kilo and she grew 5cm, I know she is long, but those 5cm really surprised me, I really thought her pants were shrinking on the drier machine 🙂 , she got some kind of smoothies that we need to order, to take once a day and another sort of milk to mix with her bottle at night, we got 5 samples and she liked all of them, now we just need to order more to start with them everyday, this will give her around 500 extra calories a day, since she is still a bit under weight, but eating better.

That’s it for now, I have exactly 2 months left on my pregnancy and this week I have started to feel more and more tired, but feeling good, the more that I talked about it with Isa, the more I realize she has no idea what I’m talking about and since she doesn’t like dolls, every time I show her with the only doll she has, she just grabs it and throws it as far as possible… So … we will see how she reacts to the surprise coming her way, almost in time for her 2nd birthday, oh time flies!!

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5

The Christmas post

I haven’t really find the time to sit and write a post, but I thought I would just drop by to post some pictures. We are not that much into Christmas celebrations but Nicklas birthday is on the 25th of December, so, there’s always a good excuse to celebrate. We try to go away every year during that time, even though I kind of hate flying, but I get the courage to jump into the plane and hopefully have a good flight. We went to Prague and had a great time, the weather was perfect for walking and I think this has been the trip that Isa has enjoyed the most. We are now back at home and I’m just waiting for her next ABM sessions in 2 weeks. She seems more aware and strong. She started clapping, she has been using her left hand more and more and after the first ABM sessions she started to bring her hands open together and now she’s clapping and touching our faces with her left hand completely open, we are really happy about it. DSC_0969 DSC_0961 DSC_0938 DSC_0915 DSC_0863

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1

No EEG for now

Isa had an appointment with her neurologist Eva yesterday, last time we saw her was sometime in May. There was no room available for her check up so they sent us upstairs to the children ER, the neurological department, right where Isa was hospitalized almost a year ago, when all this started and Eva would meet us there. I had this familiar feeling right at the moment when I crossed the entrance, I tried to look into the nurses room trying to see some familiar faces. Despite the awful feeling of being there for a week last year with Isa, the medical attention she got was really good, and everybody working in that department was really kind to us. We were sent to an office to wait for Eva and I had to go to the toilette as usual (pregnancy stuff :)) I walked through the room Isa had last year and I saw this young couple coming out with their baby, maybe around 7 months, the mum looked probably as I looked a year ago, worried, tired and carrying her child with her love pouring out from her body, I felt like stopping and giving her a hug, but I didn’t.

We finally got to see Eva and got to talk about Isa, everything that has happened during this 7 months that we haven’t seen her, she asked about her eating after looking at her weight gain charts, we explained that she is eating better and she actually put on some weight but then was sick for almost a week and lost weight again, but it seems to be doing better with food anyways. We talked about how she has been seizure free for 8 months and how happy we are about it. We thought she was going to schedule an EEG but she wanted to wait until spring, Nicklas asked her again to do one so we could see how her brain activity is since she hasn’t had any seizures for quite some months, but she said she wanted to wait one year, then she would schedule one and depending on how it was looking we could maybe start decreasing the medication, but she wanted to wait first until she had been seizure free for a whole year. She will also send us to a dietician just to keep an eye on Isa’s weight and maybe get some of those nutritional shakes so she can drink those if she is sick and doesn’t want to eat anything else. Overall it seemed that Isa is doing very good and moving forward it was nice to leave her office feeling this good.

Isa also had an appointment with the eye doctor on Tuesday, she’s having another one at the end of January, basically it seems that she is only squinting with her right eye now, so she is gonna be wearing her eye patch only on her left eye, 30 minutes a day for 6 days a week and we will see how it has improved in 2 months. Her eye glasses are getting small and she has started to take them off a few times a day, but we have to wait until the next appointment to get a prescription for new ones. I love her with her eye glasses, they are just a part of her, but they are probably a bit uncomfortable for her now.

She has been feeling stronger this week again, every time she gets sick it takes like a week until she is strong again, but we are getting there.

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