It doesn't make it any easier...

 Yesterday it was a bitter-sweet day for us. The sweet part was that Luiza was turning 15. I can't believe the time has passed so fast! But she has been so busy with school, theater/rehearsals and finals week, that we couldn't really celebrate the way we should. But the main reason we couldn't do something more special that day was because yesterday was also Gabbie's appointment at Shriner's for the neuromuscular study (EMG) under sedation. We were apprehensive not so much because of the EMG, but mostly because of the general anesthesia. This was the second time in her short life that she had to go under general anesthesia. It worried us. But little did we know that we should have worried more about the outcome than the anesthesia.

After 3 hours, in which we were anxiously waiting for our names to be called back in there to stay with her in the recovery room, the doctor came out of the surgery center to talk to us. And I was shocked, I didn't expect the news that he was bringing at all. He said that they did a very thorough exam (they even examined the arms to make sure they were responding normally, which we knew they were). He said that they had to use a large amount of stimulation (electrical) to even have her leg muscles only twitch. They did not see much going on in terms of the axons of her motor neurons. They still believe that something must have happened in utero later in the pregnancy, which interrupted the blood flow to her legs somehow. What all that meant was that, according to him, she will never be able to walk by herself, she may be able to stand and exchange some steps with the help of braces, but she will need a lightweight wheelchair at some point. He said that now she is ok with moving by crawling, but as she gets older, she will realize that she shouldn't be doing that, and she will probably stop and we will have to provide a wheelchair for her to move around. Being in the waiting room for 3 hours, we saw many other children with their parents come and go from the outpatient surgery center. Some for simple procedures, like application of Botox (amazing what Botox can do for some of these disabilities!), others for more complicated procedures. But at Shriner's you really see a little bit of everything. And it helps to put everything in perspective and it makes you very grateful for what you have. But even that didn't prepare us for what we had to hear next, it still didn't make the news any easier to take or "swallow". We went there with so much hope, trying to find out more, trying to see what we could do to help her. And just like that, in a 10 minute conversation with her doctor, it was all shattered. Tears started falling down my face, and I didn't want to cry, after all, I was still so grateful, and I didn't want the parents around me to see me crying, the same parents that are having to deal with so much already, with problems so much bigger than mine! But I just couldn't help myself. Tears rolled down my face and for the next 30 or 40 minutes my husband and I just sat there in the waiting room, incapable of saying anything, while we waited for them to call us to the recovery room to see Gabbie. Then my husband looked at me and said: "I don't believe him, he must be wrong." And I want to not believe him too. I want to keep my hopes up. Gabbie has already done so much, she has come a long way! She is already doing so much that, according to the doctor, she "won't" be able to. He doesn't know all the things she is capable of. He has never seen her stand, because taking your kid to the doctor is like taking the car to the mechanic, they never show what you want them to. He has never seen her push the toys, or try to step towards what she wants. In his mind, she can't do it. But we know she can. And we think that she will be able to do much more. I cannot begin to grasp the concept of my child in a wheelchair, maybe she will always need some support, like a walker, but not a wheelchair. But for now all we can do is wait, and love her, and try to teach her how to overcome her disability, and wait some more, and some more... The doctor mentioned that her legs are so affected that she will not be able to do one of the recommended therapies, which involves electrical muscle stimulation through a pad on the skin, because the amount of electric current that they would need to put though to cause any effect would be extremely painful to her. So all we can do is wait. For those of you who know me, you know that I am a hyperactive person, always "on the go", the concept of waiting is new and painful to me. I want to resolve things immediately, and in this case I can't. It is frustrating.

When they finally called us to go see her, I went in and got my still heavily sedated baby on my arms. Tears rolled down my face again and still do as I write this post (and I am at lunch time at work, you can imagine the scene). We can't help but think about what we need to do, what we need to change, how we need to help her. Will we have to move from our house in a couple of years into a one-story smaller house? Will we need to change her daycare to something more directed to kids with physical disabilities? Will she be able to ...   the list is endless and it is like a movie playing in your head all the time. So we are trying to live one day at a time, we are trying to keep our hopes up and pray that there is a major force watching over us and believe that everything happens for a reason. But it still doesn't make it any easier...

So many doctor visits... so much wait

It has been so long since my last post that I don't even know where to start. I wish I could say that a lot has happened since then, but unfortunately I can't. A lot of doctor visits certainly happened since that last blog, but not much improvement on Gabbie's ability to stand or walk. Sometimes we feel very hopeless, and the uncertainty is very unsettling. I wish I could know for sure so many things. I wish I knew what caused this condition in the first place. We have seen so many different doctors and all they say is that it is a presentation consistent with arthrogryposis and that they believe it happened in uterus due to a modification of blood supply at some point during pregnancy. Because it is not a condition that we can define, no one really knows what or how much is involved or affected.

Gabbie had a neuromuscular appointment at Shriners this month. This was the first time that I felt we were moving towards finding out more. The doctor would like to repeat the EMG on her legs (on her calves like previously but also on the quadriceps this time) and this time she needs to be completely sedated for the exam. We don't know for sure if she has all major muscle groups on her legs and how they respond to the nerves. Last time they checked, there was a very weak response on her calves. This exam will hopefully help us determine how much she is actually able to do or try. Sometimes when she stands up holding onto something but sits down after less than 10 seconds, we don't know if she is just being lazy and doing what is easier for her at that point, or if she is actually in pain or can't support her weight. What is really frustrating is that every little step (not literally :) ) involves a long wait. Now that we finally think we are moving forward, we still have to wait 2 months to get the procedure done because there is a waiting list at Shriners and urgent cases have a priority. 2 MONTHS!!!!! And then 1 more month to even hear back from the doctor!!!!!!


As you can see in the picture, she got her second pair of orthotics (AFOs). It doesn't show that well in the picture, but this time they modified the right foot with an insert in the front to push down her foot. The contracture in that foot is so strong that it was overpowering the braces. She has been wearing it for about 1 month now, but at our appointment at Shriners the doctor wrote a prescription to modify the AFOs to have both feet like that and to force it a little more, at maximum ankle plantarflexion. That means we will have to go back to the doctor (whenever Kaiser accepts the prescription from Shriners and authorize it) to have her casted again to make a new mold for the new AFOs.
To add to that, she had been having serious problems with reflux again and last month she actually went through a period of 2 weeks that she vomited every night except for one night (no idea what we did different that one night...). She wasn't gaining weight and that is huge for her because she is already very low weight - she still weights less than 19 lbs at 21 to 22 months. We went back to the doctor and she is again on Omeprazole, but the problem is that she HATES that medicine. We have to give it to her every morning 30 minutes before feeding her anything because it has to be given on a completely empty stomach (it is a compound medication and it needs to by-pass the pH in the stomach). It tastes awful, so of course she doesn't want it, and we tried everything, I mean EVERYTHING! Unfortunately we cannot add any flavor to it, or mix it with anything else because the acids in the stomach would inactivate the drug. Giving that medicine to her every morning has become a nightmare. She closes her mouth, spits it out, cries, screams, tries to grab it, pushes it out of our hands, you get the picture! So now, every morning, we go to her crib, she greets us with a huge smile, and soon after, we have her in our arms, holding her arms down, forcing her mouth open while she tries to scream and cry, looking at us with those eyes, as to say "why are you doing this to me, I was nice, I smiled at you and was happy to see you...". As a parent, can you get the picture and imagine how bad it is to start every morning like that? We do it because we know that she really needs that medicine. We actually tried to not give it to her for 2 days and she threw up both days. She was referred to the pediatric gastroenterologist and we have an appointment scheduled for next month. She doesn't like eating anything, but if you think about it, would you like to eat if every time you did you felt pain? My poor little girl, she has been through so much already and she still keeps the good spirits, always smiling, hugging and kissing us. What a trooper! Now if only we could be more like that...

She is very good at climbing, here she used the car to be able to climb over the ottoman to "read" the magazines.

Justified discrimination?

I was waiting for our next doctor visit before writing again with news on Gabbie's progress, but something happened yesterday that made us very sad and it has been happening very often, so I decided to write about it. I wrote many times here about the fears we have as parents about what our kids will face in their future. It is even more true with parents of kids with special needs. My friends may not realize but everything we plan for now, we have to think first on how Gabbie will be able to fit in that plan. For example, we were looking for a gym, somewhere we could go and exercise after work and weekends. We need to start soon because we need to keep up with her, and being older and overweight is not going to help us. So we visited a couple of places, but our main concern was not if they had the equipment or classes we wanted, it was if they had the daycare facility that would be able to really watch Gabbie while we were exercising. If they had a swimming pool that I could take her to exercise her legs. We wanted to take a good look at their kids area, to make sure that Gabbie wouldn't be stepped on by the older kids.

Then we were planning our summer trip. Well, summer trip for us is only a 3 day weekend, because we are not allowed to take time off work during the summer in our line of work. So we always try to make it special for the older kids, since it is the ONLY thing they will do out of the ordinary all summer. It has been difficult to plan the trip. We have to think about every single detail, and how it will affect Gabbie and us. The vacation we choose needs to be mentally stimulating while not physically challenging. It needs to give her time and space to be on the floor to exercise a little, without getting hurt. And to match that with what the older kids would enjoy has been a big challenge. In the end, in trying to please all of them, we will both be exhausted and will need a vacation from the vacation, but hey, that's parenthood!

Gabbie in the older kids room

Back to the original topic, I know that many parents of children with disabilities face the fear of the stigma carried by the word "disability". And there are of course many types and levels of disability and fortunately Gabbie's disability is very mild. But at some point the parents need to decide if they want their children in the regular schools or in special schools. One may argue that they should go to special schools that can cater to their needs, but if the disability is not that debilitating, they may thrive in regular schools, and that will maybe prepare them more for the world ahead, to be independent, and to show them that they are "normal". We are not there yet, but even at daycare things can get difficult for a child like Gabbie. Because she is 18 months old now, she should be in the 12 to 24 months room at her daycare. All the activities in that room are planned to stimulate the kids at that age group, teach them what they are supposed to be learning at that age. But to move on to different rooms, age is not the only requirement. There are milestones that they need to reach. All the other kids in that room are walking and are much more independent than Gabbie. Add that to the fact that it may be overwhelming to the teachers to deal with 4 young toddlers at a time (the student to teacher ratio at this age is 4 to 1). And if 1 of the 4 is not following, and stays behind, it makes it difficult for that teacher to watch them all.

So one day I went to the daycare to pick her up and all of the kids were outside running and playing and where was Gabbie? Outside too, but the teacher had to place her in a corner so that the other kids wouldn't step on her, and there she was, happy playing with mud. She was happy, but it brought tears to my eyes to see how excluded she was even at this young age. I understand that it was for her safety, but she is already suffering some type of discrimination. And Gabbie too is learning that she doesn't get hurt if she stays away, so many times she removes herself from the group. Most times when I go there now, she is in the babies room. It is safer (physically) for her there, but then she does not get all the stimulation for her age that she should be getting in the older kids room. Even kids much younger than Gabbie are in the toddlers room, learning different stuff and playing, and Gabbie is just crawling around in the babies room most of the time. It is so sad to see that. That was what I saw yesterday. It may have been just a glimpse of her day, but it was sad to see.

Gabbie trying at home

The definition for discriminating is " excluding or restricting members of one group from opportunities that are available to another group". I don't want to accuse the daycare of discriminating, I know that they are doing what they think is best for her. But how do we cope with that? And how do we make sure that she is still reaching all the other milestones that she needs to? How do we make sure that her physical disability doesn't put her behind in other aspects too?

What is going to happen when it is time to move to the 2 to 3 year old's room? That is coming in only 6 months from now, and she is not even ready for the 1 to 2 year old's room. And although we try to live and celebrate each day, we can't help but think about her future and all the discrimination (justified or not) that is on her way.

Please DO NOT shut up about your perfect kid

I have been thinking about what I wanted to say in this post for a long time. As you can imagine, I have been reading a lot about arthrogryposis, chromosome deletions, and other disabilities, and once in a while I come across some texts written by parents of children with disabilities. Their postings are most times very enlightening and definitely help put everything in perspective. A couple of these posts were about "what they wished their friends knew" and one of the things they would like the friends to do was to stop talking about their perfect kids. I didn't understand that very well when I first read it, and I guess I still don't. I can try to understand the pain that they feel when hearing about the perfect or above normal development in the other kids, the pain in knowing their kid will never be able to achieve that. But as much as it hurts hearing and seeing some things, I don't want my friends to shut up about their perfect kids just because mine is not going to be able to do what theirs can. My daughter is still perfect to me, as every child should be in their parents eyes. She is the most amazing baby I know, in her own way. So why would I stop you, my dear friends, from talking about all the joys your children bring to your life? All the little and big achievements? I should be the first one to recognize little achievements - I find myself more often than not with watery eyes because of every little thing Gabbie does.
So please, my dear friends, DO NOT shut up about your perfect kid, tell me every single detail of every single achievement. And that goes especially for you, my sister, who has a baby 7 months younger than Gabbie, but who now is able to do so much more than her in terms of motor skills. I don't want you to ever feel like you should not say something in front of me, I want to know about all the standing up on her own, the little steps she is able to make around the sofa, everything little step and every big milestone that my niece has accomplished. I want to celebrate the milestones with you, please don't take that away from me. I am not going to say that it doesn't hurt to look at my own kid and think that she may never get to experience that milestone, but I will get over it. I am celebrating every little one she gets to experience, and no one can take that away from me.

Going back to the parents that want us to "shut up about our perfect kids", the only way I can interpret that is that even if you think your kid is perfect, they all have imperfections. I had 2 "perfect kids" (whatever that means) before having Gabbie. And yes, they were (and still are) perfect, always ahead of the curve, smart, beautiful, just perfect! Or are they? Every human being has virtues and vices. No one is perfect. I am not perfect and neither are your kids (or mine!).

Bottom line is I don't have a problem accepting my daughter's disability, and if you are going to be measuring your words trying not to offend me, then YOU are the one who has a problem with my kid's disability. And I am humbly asking you to accept her like I do, and be a good friend and celebrate her with me, the same way I will celebrate your children!

Accepting the word DISABILITY

Accepting Gabbie's diagnosis has been very hard on all of us, but I think it has been especially difficult for my husband. Of course we all went through all the stages of shock, disbelief, anxiety, and fear. It is not that my husband did not accept the reality of Gabbie's situation. He just has a difficult time dealing with it. Since the beginning, I have been very active in trying to find articles, books, anything that would help me understand what was going on with her. In my mind, the more I learn about it and the more I understand, the more I can help her overcome anything that she faces. And he believes that too, but he still can't research the problem, he can't even look at internet pages of other children with the same problem, but ultimately I think he just can't deal with the thought of his little baby having a difficult time in the future and not fitting in what everyone knows as "normal". There is no doubt that her development is delayed. But there is also no doubt that she has come a long way and we believe that she will be able to accomplish anything she wants in the future. She is very determined and her personality is amazing. Acceptance is a big part of this process, and we already accepted the fact that she has a problem, that her motor skills will be always delayed, that there is (finally) a diagnosis. What we are having a very difficult time now is accepting it as a "disability". What is a disability????

According to Wikipedia, "Disability is the term used to define a restriction in the ability to perform a normal activity of daily living which someone of the same age is able to perform". Well, then there is no denying, my child has a disability. But there are so many ranges of disability, that I never wanted to accept that she had one because I always thought that it was not fair to the kids that have many more serious issues than her. Going to Shriners definitely put things in perspective for us. Gabbie's problems seem so small when we see other kids that have much more serious and debilitating conditions, that I always thought that saying that my kid had a disability wouldn't be right. I am still struggling with that and yesterday I used that word for the first time, and it still didn't feel right:

Luiza, our 14 year old daughter, had an orthodontist appointment. We really enjoy this clinic. It is the same group as my kids's dentist, and we love them. They are always very nice and do a very good job with kids. When it was time to make her next appointment, I requested that it be later in the day, since I work until 3:30pm every day. Every time they tell me that it had to be after the suggested 6 weeks (for braces adjustment) because every parent wants them later because of the kids's school. We usually have to go 8 weeks between appointments because of that. Well, this time the accounting person was the one setting up my appointments and she told me that they would charge an additional $75 a month because that would extend her treatment period. It didn't make any sense to me, because she would still be seen at the clinic the same number of times, so I should be the one to care if her treatment lasted 2 and a half years instead of 2 years, not them. So, for the first time, I said "I have a kid with a disability at home, and I need to save my sick leave hours for her appointments, I am sorry. Is there a way that you can find us an appointment later in the day?" She didn't respond, then she looked at my daughter and said "So, if there is any day that you are not in school, it would be good to come earlier in the day for that appointment." So I replied "No, the problem is not her school, it is that I work and I have to use my sick leave hours with my disabled baby" (just in case she hadn't heard me the first time). She looked at me and said "Well, everyone wants the late appointments." And I said "I understand, but I do have a valid reason..." and she interrupted me and said "Everyone has their own personal reasons that they believe are valid!". I was astonished, mouth open, staring at her. I could not believe that she had just said that. And to add insult to injury, she continued: "That is why my own kids can't get braces yet, because I cannot take the time", and smiled.

What is a parent supposed to do in that situation? I could yell, scream, or as we say in portuguese "make a show". But what or where would that get me? She is just ignorant and rude. So I just became very sad and left the place with tears in my eyes. I was crying out of frustration. Frustration that this is the world my child with a disability will face. This is why my husband has had such a difficult time facing Gabbie's reality. Because he knows all the challenges that she will be facing. We are not talking about physical challenges. Those we already accepted. The real challenges in the real world will be PEOPLE. People that have no idea on how to deal with them. People that do not accept them, people that are rude, people that will hurt them on the way. How do we, parents, cope with that? How do we prevent that from happening? I am still crying about yesterday's incident. I am not ready to deal with more of these. And I thought I was ready. Ready to do whatever I could to help her. I guess my husband was not the one in denial about Gabbie's problems, I WAS.

General updates

Me and my beautiful niece

First I need to apologize for being a lousy blogger. My last post was so long ago and so much happened since that one, that I didn't even know how to start this post. And I even started writing this post more than a month ago and only now I am finishing it up. So well, let's start last year! Days after Gabbie got her braces we traveled to Brazil for the holidays! The trip was miserable but our time there was amazing. Gabbie does not travel well, and the journey was long. First we drove to LA (that alone is a 7 hour drive). At least we went at night and she slept for that leg of our trip. Then we had to wait for 4 hours in an airport under construction, with nowhere to go because we couldn't even check in so early in the morning, and take 2 flights of about 7 hours each to get there. It was miserable. She could not understand why she had to be on our lap the whole time, wanted to go crawling on the floor the entire time, barely took a nap - and that was only because we decided to finally let her sleep on the floor! We were exhausted when we finally got to Rio. On top of all that, Copa Airlines lost my bag - well, technically they didn't loose it, they just didn't have enough space in the second plane and had to leave it in Panama to come the following day! So we finally got to the hotel and had about 40 minutes to get ready for Gabbie's and my niece's baptism. Let's just say I was on go-go-go-non-stop mode and now I don't remember much from that day. To add to that, Matheus (my oldest) even had to go through it all not feeling well (something he ate?), with vomiting and diarrhea, but WE MADE IT. The ceremony was beautiful, my family and friends from Brazil all there! I could write one entire post just on that!

After that hectic day (or should I say hectic 48 hours) it was smooth sailing. We traveled the next day with my parents, my sister, and her family to a little hotel in a beautiful beach in Saquarema, where we stayed for 10 days. Weather was nice for 6 or 7 of them and we enjoyed the beach, the swimming pool, the sun, the food, and most importantly, each other! It was so good to spend time with my family and to give my kids the chance to experience that. It was summer in Brazil and that made it very difficult to have Gabbie wear her braces. We were afraid she was going to get hurt when crawling, because there was no way to have her wearing pants to cover her knees. Too hot for that. And we spent most of the days by the pool or at the beach, difficult places to have her with braces on too. So we let her enjoy some days without them, and maybe just once or twice in the whole vacation we put them on her. She did fine! There she started to try something new. Whenever she wanted to reach for something above her head, she finally realized she needed to go up. So she started to straighten up her legs in the crawling position, with her little buttocks in the air. Huge step for her, because the doctor said that she needed to start stretching up her knees - the contractures on her knees are mild, and he believes that, once she starts standing up, she will be able to stretch them out herself, with no need for surgeries. We were so happy. My dad almost cried seeing that.

Fast forward to today, here is her progress since (I have to fast forward or I will spend 10 posts just on the trip and the amazing time we had, which would be interesting, but not what this blog is all about, sorry). Gabbie now is much more interested in standing up. But unfortunately she cannot support her own weight, so she sits after some fast seconds. The big question in our minds is: are the braces helping? I am not so sure, but I have NOT seen any difference in the angles of her feet, they have not helped stretch at all the contractures, and it is even more difficult to put them on now, because she is very aware of them, and immediately pulls her foot up when I put them on - so is it defeating the purpose????

The frustrating part is that we do not have any appointments scheduled for follow up with any of the doctors. I think that she saw so many doctors that each one is thinking the other is following up, and she doesn't get any appointment. I managed to make an appointment with a physical therapist for next week, so we will see what she recommends. I wish we had some sort of water therapy through Kaiser. It could help her a lot, because now she is starting to understand "walking" even though she can't support her weight. Whenever we hold under her arms and support most of the weight for her, she moves her legs as if walking. So she knows what she has to do, but at this point she can't. We will also talk to the PT about maybe a walking frame to help her.

Meanwhile, she continues to be the most amazing baby! Yeah... I know, every parent probably thinks that her/his baby is amazing, but she is such a happy baby. When we go out, everybody asks if she is always smiling like that, and comments on how easy-going she is. There is nothing more relaxing after a busy day than to come home and play with her, or just watch her play. I bet that although many parents love coming home to their baby, not many can say that it is relaxing. But that is the effect that she has on us. The world stops for a while when we are with her. What an amazing baby!