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!