Life lessons

Written in February 2015
Today I was sad, thinking about all the people who don't understand and don't accept disabilities as part of life. Thinking about how much discrimination is out there. I had just read an article about how this mother wanted to give up her child because he was born with Down Syndrome, and when the dad wanted to keep the child, she divorced him. Some things like that may make you lose your faith in humanity! Then I read another one, in Portuguese, from a journalist called Silvia Pilz, who writes for one of the main newspapers in Brasil, who is very preconceived against people with disabilities (and also the poor, the black, and anything that she can cause some controversy writing about), and I just couldn't help myself! In one of her articles, she wrote (translated by me):

"Is the swarm of children with Down syndrome still here? They must have something to teach us. I always see reports of touched parents, as if they were blessed. God, do we have difficulty in assuming burdens!"

"Será que o enxame de crianças com síndrome de Down ainda está por aqui? Eles devem ter alguma coisa para nos ensinar. Vejo sempre relatos de pais emocionados, como se fossem abençoados. Deus, como temos dificuldade em assumir fardos!"

Burdens???? My daughter does not have Down syndrome, she has a different disability, but yes, I am blessed for having her in my life. And yes, I have learned a great deal with her. She taught me to see the world in a whole new way, to be more tolerant and more patient, to take one day at a time, to appreciate what I have, to love in a completely different way, among many other things. I can only feel sorry for Silvia, for she hasn't had the opportunity to have someone like this in her life.

One day my husband and I were in deep conversation about Gabbie. It was one of those days when we were feeling down, asking ourselves "why us", questioning our own ability of dealing with the situation at hand. "Why were we chosen to be her parents?". My answer was that I believed it was exactly for what I mentioned above, for us to learn and grow. Then he asked me "But do you believe we are the only ones who need this lesson?", to what I immediately replied "No, but maybe we are ready to receive it now."

And now, more than ever, I believe in that - Silvia Pilz desperately needs this lesson, but she is not ready to receive it, and I can only feel sorry for her.

Little girls and colors. One step forward, two steps back.

All pink :)

When I first learned I was expecting a girl, I started thinking of all the things I was going to buy her! There are so much more colors to choose for girls! I chose the colors for her bedroom, and I had fun choosing the colors for all her dresses and bows. Sometimes it was impossible to stay away from pink, and, as she grew up, it became one of her favorite colors. At some point it seemed that everything she had was pink. Even her glasses were pink! But I never thought one day I was going to be faced with the choice for the color for her first wheelchair.

We went to that particular appointment to talk about a stroller for her. She had been complaining of pain and willing to walk less. For the past year she had been walking independently, without the walker. We were so happy for all she had accomplished. She still has the contractures on her knees, which are about 20 degrees now, and the ones on her feet, so she walks with her back bent. Doctors had warned us of potential back problems. For about a month she had refused to walk sometimes, and asked to be carried. Many times she refused to walk with the pre-school teacher to the school bus, and they thought she was just being stubborn. We noticed that sometimes she would stop walking and put her hands on her back, or on her knees, and we asked if they hurt, and the answered varied from "No, I'm fine" to "Yes, here (and she would then point to a completely unrelated body part)". She still has a very hard time identifying "pain". I think that for her whole life there was always some level of pain present, and she is having a difficult time judging the levels of pain. But we knew that, even though she couldn't express it, she was in pain. Her behavior changed a lot during that time. She became cranky, whiny, difficult to deal with. And we all just thought it was a "phase" she was going through. Until one day, my husband and I were talking, and we came to the conclusion that, if we were trying to keep up with our peers, be active like them, walk like them, all day long, while having less muscles and nerves on our legs to do that, we would be in a bad mood too. But she rarely complains, so we didn't know she could be so uncomfortable. We noticed that she was getting tired more easily, and at the end of the day her behavior problems were worse. We talked to the physical therapist about that and she agreed with us that she was in pain, and that we needed to have her use her walker again. With the walker she can support her weight more on her arms, and rely less on the legs. We left that appointment feeling defeated. First, it was really difficult for me to get her walker out of it's storage place in the garage, where it had sat for almost 1 year. It felt like we were going backwards. And I didn't think Gabbie would want to use it, because she COULD walk without it, her friends don't use one, why would she? 

The idea behind having her use the walker again is to save her joints. Gabbie will probably not have a surgery to resolve the contractures until she is about 16 or 17, because the surgery will affect her growth plates. We need to get her to that age as comfortable and with less pain as possible, hence the walker coming back. But even the walker can only get her to cover medium distances, such as going from the classroom to the playground, or to the bus. Whenever she needs to walk more, like a trip to the mall, or even just going to the park, we have to carry her or use a stroller. She will be 5 in a couple of weeks, so she outgrew her baby stroller. That's why we went to that appointment to talk about a medical need for a special stroller for her. 

As parents, we always see our kids as our babies, and it's hard to watch them grow. My older kids are now 18 and almost 20 and I still call them "kids"! But the reality that Gabbie is almost 5 and will soon need to be more independent was brought to us at that appointment. Instead of a stroller, she is getting her first wheelchair. To watch my baby sitting on a wheelchair for the first time, while they took measurements was something very painful. Not to her, she was very happy sitting on that wheelchair, as if it was a new toy. I was definitely not ready to have my baby on a wheelchair. In my mind, all I could think was "BUT SHE CAN WALK!". I cried a lot that night, and many times after that, and even now as I write this.

Gabbie and her friend Kinsley, two beautiful princesses

And then, Gabbie was the one to (again) teach me a lesson. When we gave her the walker she immediately started using it. That showed me that she was feeling such relief from pain when using it that she didn't even question it. The simplicity of children is amazing to me. She still forgets the walker behind once in a while, and starts walking away without it, but she doesn't fight the idea of using it. Gabbie taught me that mobility must be practical. It's very difficult for parents to accept the idea of "effective mobility" because we want our kids to do everything the "normal" way. And it is "normal" to walk - but walking may not be key to success. It's definitely not effective nor practical in her case. And I need to come to terms with that. The fact that I'm still crying while I write this post is proof that I haven't. Yet. I'm gonna need some time. 

In 5 weeks or so we will go pick up her first wheelchair. There were not many choices in terms of color, and I was tempted to go with black. Black is classic, it is more discrete, But why should she be discrete? She will be 5 years old, and loves to be a little girl. She is happy, she is an extrovert, and I am sure that she will be as happy with her RED* wheelchair as if we were giving her her first bike. And I'm going to be trying really hard not to shed more tears, and to be happy for her. Because that's what mothers do. But it is still not a bike.

*only the legs of the wheelchair are red, the body is still black. Can you imagine a red wheelchair? ;)

Looking back on Gabbie's year (2014) - a lot to be thankful for!

It’s pretty much impossible to get through these last days of 2014 and not look back, reflect, and be thankful for all that has happened in this amazing year. It was a year of many struggles and my stomach and esophagus are witnesses to what stress can do. And also that constant pain and occasional injections on my left shoulder and arm are proof that carrying extra weight (mine and Gabbie’s), and all the bending and twisting can take a toll on your body. But as any other mother out there, I would do it all over again, and probably will for as long as I can - because she needs me to and because I have a lot to be thankful for.

My little girl continues to go against all odds and prove all doctors wrong. This year she started walking without her walker and, even though she still loses balance and falls a lot, she gets up every time with a smile on her face, to try again, and again, and again. She is determined and doesn't truly understand her limitations yet (I’m sure that will come later, as well as the frustrations associated with that), but what amazes me even more than her determination, is that she never complains about what she cannot do. She’s been trying so hard and I am so proud of her. 

2014 marked the year that Gabbie started in the two hippotherapy programs. She has been going to Ride-to-walk for 9 months now and we believe that it had a major impact on her ability to walk unassisted this year. The therapist, staff and volunteers are amazing and Gabbie loves to ride “her” horse.  At Project RIDE she also works on cognitive skills while still getting the motor and sensory input from riding the horse.

She continued her physical, occupational, and speech therapy sessions, and now she has been evaluated by a group of therapists from our School District and they were able to place her in a special education pre-school program for 3 hours/day to give her the individualized attention she needs and get her ready for school. That will start next year and we are so excited about it and thankful to all the therapists along the way that helped make it happen. We believe it will help her a lot.

One major accomplishment that I need to mention for 2014 was potty training. Because she needs help to dress and undress, to climb on and off the toilet, and has a hard time focusing on anything, we had been dreading potty training. But we finally decided it was time and, as anything else, she took it like a pro, and proved us wrong again. It was not nearly as difficult and in 4 days she was a “big girl” and is very proud to be wearing her big girl “My little pony” underwear.

Of course we still have a lot to work on, but looking back on all the good things that happened this year, tears of joy come to my eyes as I write this, and I am so very thankful for it all. 2015 will certainly bring its share of struggles and tears, but we know that we will overcome whatever comes our way, because our little girl teaches us every day that nothing is easy, but many things are worth fighting for.

Thank you Gabbie for being my daughter!

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!

The roller coaster continues

Gabbie got her braces last week. At first she didn't like them. But she doesn't like anything on her feet anyway. She spends a lot of time trying to remove shoes and socks whenever she can, so it was no surprise that she was going to try to remove the braces too. But the velcro is strong and goes around, so she hasn't figured it out yet. She doesn't seem too bothered by the braces, though - at least not any more than she is bothered by regular shoes. She is still crawling and doing everything she was doing before them. She tends to curl her toes and push the feet upward, and it defeats the purpose of the braces if she is trying to pull her feet up, so we needed to find shoes to go over the braces to pull the toes down, since the velcro part does not go all the way to the toes.

 We literally spent hours looking for shoes, going in every single store and department store at the mall, trying many pairs on, and still have not found one that fits perfectly. We bought a couple of pairs that will do for now, but eventually we will need to buy the hatchbacks that are made for that purpose. They are expensive ($60-70) and they wouldn't be ready before our holiday trip, so we decided to wait for when we come back.

Then yesterday we had the appointment with the orthopedic surgeon. He is a very nice doctor, very personal, very caring. He said that just by reading her files, he thought her condition was much worse, and he was very pleased with what he saw. He said it is not bad at all, but remember - he sees a lot of stuff, so not being bad at all may not mean really that. It just means that, putting in perspective, it could be much worse. He said that she has some flexibility in her feet, and with this condition, it was at its absolutely worse at birth, and that it is not going to get any worse, it will just improve from now. The level of improvement is what is still up in the air. It will depend on how much Gabbie will be able to do in the coming months and years. He doesn't want to rush into surgery because he believes she will stretch much of the contractures herself when she tries to stand and walk. Just like the doctor at Shriners, he believes that the brain commands these things, and since her brain is normal, she should be able to get up and try. And by trying, she will be stretching. And in the future, whatever she can't stretch, then maybe we will think about surgeries. It is a roller coaster. Not only of emotions, but of medical opinions. Every time we see a different doctor, we hear something different. First we hear "be ready for surgeries, she will need many of them and lots of physical therapy", now we hear different. We want to believe in this so badly that we are afraid of believing just to hear something different next month. I want to be able to run in the steady part of the roller coaster for a while. I want to believe that everything will be ok and soon. I want to believe that next year she will be walking. But I can't. Because part of me wants to be ready for the possibility that it doesn't happen that way. Because the more ready I am, the more I can help her. So call me a pessimist, but those of you who know me well, know that I have always been the Pollyanna, I have always been the one to see the bright side of things, but now it hit home too close. So I am hoping for the best, preparing for the worst, like that feeling that you have when you are going up on the roller coaster, but you know that it will go down at some point, you just don't know how soon or how bad, and then hopefully it is just a bump and the ride ends. 

Arthrogryposis

Arthrogry...whatsis?????? Yes, we finally got a diagnosis on Gabbie's condition. This month has been a very busy one for her with doctor appointments. It started with her appointment at Shriners. We had such high hopes for that, as I mentioned on the previous post, but nothing... Then we had a very good appointment with her physical therapist at Kaiser, who said we should take matters into our own hands and fight for what we want. She helped us by getting an appointment with an orthotist to get his opinion on bracing. We went there and the orthotist said he thought we needed to brace her feet now, that he was particularly worried with the right foot. The same day he got the measurements and was going to send it through Kaiser for approval. We got that feeling that we were finally moving forward!

Then we had her 12 month appointment with her pediatrician. It was a tough one because she got 6 vaccines (3 on each leg) on that appointment, but many positives came out of it. We discussed genetic testing with him, and he was all for it. In fact, truth be told, he wanted genetic testing done 10 months ago, but at that point he wanted to rule out spina bifida, which we already knew wasn't the case. So he put the referral for the genetics department immediately and on the same day we were already taking her to the lab to get blood for the tests (poor thing... on top of the 6 shots and ON her birthday). She was a trooper! We also got a referral to an orthopedist and a nutritionist, since her weight gain is very poor.

The appointment with the orthopedist was uneventful, pretty much she just told us that she thinks Gabbie will need surgeries soon to release the tendons on her feet, and referred us to the surgeon (appointment next week) to get his opinion.

The appointment with the geneticist was great. Both the geneticist and the counselor are awesome doctors, and listened to us and discussed her condition for one hour! We felt like they were treating us very fairly, and that they were really listening. They diagnosed her condition as mild arthrogryposis. In her case, it only affected her legs, with mild contractures on the knees and tight ones in her feet. It is actually much more prevalent than we thought - 1 in 3,000 babies. Doctors were very positive, and believe that Gabbie will be able to have a close to normal life and even run a marathon in her 20s if she wants to. We were so happy to hear all that. But then we got home and started researching about this condition and looking at the information online brought us to tears. Reading about it was disheartening, it was like it brought a whole new level of reality to us. I cried - a lot. My husband couldn't talk about it for 3 days. I know that we are very blessed, she is my perfect baby, but it is always difficult to hear, and see, and read. I think that deep down, while we didn't have a diagnosis, we still believed that it could be positional, and that, with time, it would go away and she would overcome all this. Well, I still believe she will overcome whatever is on her way, but now we know that she will need a lot of help. She will need a series of surgeries for many years, intensive physical therapy, and all the help we can give her to increase her range of motion.

I know that the best we can do for her is to stay positive, learn as much as we can and give her all our love. She has a tough road ahead of her, but she surely already showed us that she has the right personality to overcome all this. Tomorrow she will get her first pair of braces, and I am scared, and stressed! But we know she will take all this like a pro! I just don't know how mommy and daddy will take it...

And we have a crawler!

Yes, I know, that's what babies do!!! But if you have read my previous posts you know that our Gabbie has had her share of struggles in that department. Crawling is difficult for her because of the position of her feet, or more specifically because she can't flex them, so it may really hurt to crawl. But she finally realized that crawling is more effective than dragging her body on the floor. The first day we saw her doing that was in the first days of October, so a little before 11 months. My husband and I kept staring at each other, as if not believing what we were watching. It may seem very silly but we both had tears in our eyes, we realized we were both crying, it was a very emotional moment. It is interesting how we take certain things for granted and then we realize that they are not granted, we did not know until that moment if she was ever going to be able to crawl. Babies can't exactly tell us these things, and as the doctor at Shriners told us in the last appointment, it was up to her now, there is no way to know what she will be capable of. Then the next days she decided she didn't want to do it any more. But a couple of days later she tried again and now she goes everywhere crawling. This picture was taken at Halloween (wasn't she a cute little duck?). Notice the position of the foot when she crawls.

 Once in a while she still tries the army crawling/dragging crawl, but she know it is better the "right" way. And now she is trying to stand. She still has no strength at all on the lower legs, so technically she can't, but she wants to. We thought timing was great because we would have our next appointment at Shriners the following weeks. The doctor had said that once she is trying to stand, he would give her braces, to force the feet down a little more and give her some leg support. We had such high hopes that she was ready for that, and that the following week we would be getting them. But then the day for the appointment came and I was so nervous! We had to wait for so long. We finally saw the doctor, and unfortunately he didn't tell us anything different than what he had told us 3 months before. Now he said to wait until she is 18 months, because technically babies usually walk anywhere between 9 and 16 months, so she is still within that range. I was so frustrated!!!! She is trying so hard! And she is getting frustrated too, because now she is more aware of things and gets frustrated. We left that appointment so sad, so many questions that no one can answer for us. They want to do another EMG, this time on the quadriceps, because they think they are equally weak. We will go back in 3 months for that but they won't see her for braces for another 6 months. This wait is horrible!

In addition, we have been doing a lot of research, trying to find out what is wrong, what caused that on her. As the doctor at Shriners said, she is a normal baby from the waist up. He said he has to treat her as a spina bifida baby, but she is not. So what is it? We came across some rare chromosomal deletions, specifically one called 10q26, and the more we read about it, the more we think it may be a possibility, so we asked the doctor at Shriners to test for it, and his answer was "your baby is normal, she does not have a genetic condition". What doctors sometimes fail to recognize is that depending on where in the leg of the chromosome the breakage is, symptoms can be very mild, and sometimes adults don't even know they have it. But we haven't lost our hopes yet. We will try to talk to her pediatrician on her 12 month appointment and see if he will do it!

Other than that, she continues to be the happiest baby I know, always smiling, very playful, just a happy kid, which also bring tears to my eyes every time I say or write about that, because that in itself is a lesson for us. She only gets upset for a very short period of time, and forgets about it quickly. What a happy baby!

What do you mean "you don't know" ? We have to wait again?

We finally had our appointment back at Shriner's after the MRI. We received good and bad news. The good news is the MRI of both the brain and spinal cord were normal, they did not find anything wrong. That was a relief because it means she has no neurological developmental damage in that sense, but now we are back at stage zero again. WHAT IS WRONG THEN?????? Here is her latest picture.  Her feet are still very dorsiflexed, and the doctors now believe that she has some congenital absence of some anterior horn cells, which gives it a pattern similar to what they sometimes see in cases of arthrogryposis. Not very reassuring... But the doctor said that more than a leg function, walking is pretty much a brain decision. She needs to decide that she is going to try to stand up. That life will be more interesting that way. For now, she is very comfortable commando-crawling everywhere. She still hasn't sat up by herself, so she is very delayed developmentally at least in the physical part. We need to wait for her to decide to do these things before we can proceed. Then they will try to do serial casting again to try to bring the feet down a little more so that she doesn't walk on her heels, and then , when she is much older, they think she will need surgery on her legs/feet to do a surgical release and transfer of the anterior ankle moving one of the muscles to the calcaneus. In summary, we have a rough road ahead of us, but it was certainly a relief to hear that her brain and spinal cord are normal. But now we wait again, this time we wait for Gabbie to decide to sit up, stand up, etc. Only then we can move to our next steps in this journey.

Done with the scary MRI but now we wait again

This Monday Gabbie finally went for her scheduled MRI. It has been a difficult process to navigate the bureaucracy of both Shriner's and Kaiser to finally have it scheduled for 1 month after the consultation, not within 1 to 2 weeks as requested by the doctor. But it is done now and it was a very scary process. First because babies need to be under general anesthesia for the procedure, because they need to be completely still. Well, the thought of having our 8 month old under general anesthesia was easy to swallow, but we knew that we were doing it for a good cause, she really needed it. But we had no idea that they would just take her away from us right there at the waiting room, and would only call us back when everything was done. When my son needed a CT scan years ago, he was around 6 years old, and I was with him through most of it. I was there when they put the IV on his hand, when he started to feel groggy, and then they took him in for the scan. But apparently with babies, they just take them. Maybe because parents are usually not the most helpful creatures when it comes to their babies and medical procedures... but we were expecting to be by her through most of it. No, we had her taken away still smiling at us, and then 1 hour and 40 minutes later they called us back to go to the recovery room with her. Those were the worse 100 minutes since she was born. Every beep or every announcement for all the different "codes" they use, you think it is about your kid. We would hear "Emergency, code 27, operating room", and we would think it was her. We would hear "Code 4, building 1" and we would think it was her, even though we had no idea if we were in building 1". 

So, after the wait we finally see her, and she has all this wires and tubes, and she immediately starts to wake up. She is so cute. She was trying to open her eyes, she saw me, and was trying to smile and say "na-na", which seems to be her favorite thing to say, and I like to believe it refers to me. She was a trooper! Never cried, not even when she was taken from us into a cold room full of people she had never seen before. No crying when she woke up either. Just smiles. She was trying to roll over as soon as she opened her eyes, and it was funny to watch the nurse try to disconnect all wires that she was getting tangled in, and then Gabbie removed the oxygen tubes from her nose herself. She was determined to be free from all that stuff. Before she could do any more "damage", the nurse picked her up and gave her to me. 

She was so sweet, every time she looked at me, she tried a smile. The nurse then gave me a bottle of water to give her, and then apple juice. She drank them really fast, she was hungry, not being able to eat since the previous day. Then it was already time to go home. She slept half the time, and was a little nauseated when we were home that afternoon. But I think the only bad thing that she really remembers from the whole experience was removing the earrings (which can be very difficult if you never removed them before) and then putting them back on! LOL Now every time that I touch her ears, she looks at me like "you are not doing that again, are you?".

So now we wait again. Images are ready, Kaiser was actually very fast in getting a CD ready for me. We have an appointment next week at Shriner's and we will see what our next steps are. Keep your fingers crossed for us and of course your prayers are always welcome!

Eating keeps her busy

Gabbie has never been a good eater. She doesn't really enjoy her bottles, but who would???? That Nutramigen tastes really bad, believe me, I tried! And smells really bad too! I wouldn't want that either, I can't blame her.

But she likes to eat her baby food. She does not like the ones in the little jars, but loves the pouches. The consistency in the pouches seems to be different, not so liquid, and she prefers them that way. Carrots are the absolute favorite! But she also likes some others that I am too afraid to taste after the experience with the Nutramigen. If they taste like they look, I don't want to try that! But even with the ones she likes, she is not like my other kids were with food. She takes her time, doesn't seem too eager to eat. Then we discovered finger foods. I thought she was too young to introduce real finger food, except for apples, that I let her suck and just pay attention so that she doesn't get a small piece. Well, she is only 7 months, but I went to the store to find something I could give her, and we decided to try the puffs anyway. She loves them!!!

They were not around 13 and 15 years ago when I had the other kids, so I had no idea that they actually dissolve in her mouth and she doesn't choke. So now, when we are having dinner, we just put her in the high chair next to us so she can also participate, and give her puffs. That keeps her busy and we can always have a nice family dinner. That has also helped with her coordination. She seems to be doing great at that! Watching her reach these little milestones is great, it makes us forget for a while that some milestones will be very difficult to reach, and that we have a rough path ahead of us!

Follow your instincts

Yesterday we had the second appointment at Shriner's. Gabbie had a EMG done, and when the doctor told me it was a simple surface EMG and I had nothing to worry about, I believed. Well, nobody told me that involved having a huge needle inserted in my daughter's legs without any numbing medication, with me holding her while she was screaming and looking at me with those eyes, as if saying "why are you letting them do this to me?". After that came the worse part - to listen to what the doctor had o say. The doctors have determined that she has an abnormality somewhere in her spinal chord. It may be tethered, or it may be something else. Whatever it is, is incomplete, because she is able to move her legs, but the muscles are very weak. The next step is a MRI, and she has to be under anesthesia for that. The doctors want it done as soon as possible, to determine the need for surgery, and with every neurological disorder, the sooner the better. So now we wait again, this time for an appointment for a MRI with Kaiser. We are very worried, we asked about prognosis, and they don't want to say much without first seeing what the problem and where in her spinal chord it is. As for her development, she is getting better at supporting herself sitting, now she can do it for a few seconds before falling over. She cannot bear any weight on her legs, so there is no attempt to support her weight when we hold her under her arms. But other than that, she seems a very happy normal baby.

Gabbie a couple of weeks ago. Look at her foot and how different it looks - and the doctor continues to say it is normal?

So you can imagine how scared we are, but we are specially frustrated, because I have been talking to her pediatrician and podiatrist about this for months. They always dismissed it, especially the pedi, saying that I had nothing to be worried about, that she would eventually reach her milestones, that I couldn't compare babies, etc. How can they say that? How can they be so dismissive of what we are trying to say? They see them for less than 10 minutes every 2 or 3 months, how can they know more than parents that see the baby every day? I had to beg her pedi to send the referral to Shriner's because he never sent us to see a specialist. Maybe if we had seen one when she was even younger, the prognosis would have been different. I am so angry with the system right now. Why doctors always assume that we are a bunch of stupid parents that just whine and don't know what we are talking about?

Putting everything in perspective

On Friday we had our appointment at Shriner’s. We got there and were immediately seen by the Chief of Orthopedic Surgery of a very renowned hospital/medical college. We thought we would have all of our questions answered, but it is never the way we want it to be… Everyone there was very nice to us. The doctor sent us to X-ray, and he was sure the diagnosis was going to be one of 2: either talipes calcaneus valgus, which is positional and not a big deal; or some sort of congenital calcaneus defect, which I can’t remember the name. This is a picture of how the feet and legs looked like when she was born.Sorry it is upside down, but I still haven't figured out how to turn them!

After the x-ray, the doctor told us that it was not the congenital defect, which was a relief, but he also said it was not a simple talipes calcaneus valgus, because he would expect it to be better by now if that was the case. He also mentioned that she has no Babinski reflex, and she fails to curl her toes when they stimulate a reflex. That led him to believe that the problem may be neurological. Somewhere the nerves that attach to the muscles of her leg/feet and the muscles themselves are failing to communicate. The next step would be a MRI to check for any abnormalities in her spinal chord, but the doctor does not recommend it right now, because she would have to be sedated. Next week we will go there again for a EMG, electromyography, to see how her leg muscles respond to stimuli. But for now, we came back home with more questions than we had when we first arrived at Shriner’s. It did give us some validation that we are not crazy and that there seems to be something wrong even though the pediatrician never really thought so. We asked the doctor if all the potential diagnostics he mention were treatable, and his answer was unsettling: “some of them are…”. We are trying not to worry and to hope for the best but it is not very reassuring when the specialist of the specialists says he doesn’t know what is wrong with your baby.

But one thing Shriner’s did for us very well – it showed us that we need to put things in perspective. We all live our lives thinking that our problems are so big! Just sitting at the clinic’s waiting room will show you that your problems are so small! Those kids and their parents should receive a medal! To see the smile on some of those kids face, to see how brave they are, and their parents are, that will teach you a lesson and bring tears to your eyes! Our trip to Shriner’s was very emotional to me.

Then today I learn about the baby of a friend, who was born some weeks before Gabbie. I had not heard from her at all since the baby was born, and I thought it was strange, but with a toddler and a newborn, I thought she was just busy. Well, she has been very busy, her baby has a very rare disease and has all sorts of problems, from vision and hearing impairments, to a heart defect, to mental problems. My thoughts go to her and her baby, and all prayers are appreciated, I am sure. Right now I feel so small, and my problems seem so small too. Gabbie is a happy healthy baby, and I will do my best to get my answers. She will get better and hopefully she will walk when she grows up. But if that is all we have to deal with, I am the lucky parent. I am so grateful that she is a normal, healthy, happy and in so many ways, perfect baby!

Waiting for an appointment

We finally convinced her pediatrician to refer us to Shriner's hospital so that a specialist can take a look at her legs and feet. We are very concerned with the total lack of muscle tone and the position of feet and legs, and of course, the clubbed feet. We really like her podiatrist but at this point we need to hear what is going on and what is ahead of us from a real specialist. After the referral, I got a phone call from Shriner's and they asked me to send all of her medical records for their evaluation. I also added some pictures we took, because pictures can give a much better idea of what we are trying to say. In 2 weeks we got a paper in the mail assigning a day and time for her initial consultation in another 2 weeks. So the whole process took 1 month, which is not bad, but it has been an excruciating month just waiting and waiting... The appointment is tomorrow, and we can't wait!

Meanwhile, the daycare director arranged for a consultant to go there and take a look at Gabbie and suggest ways to help her develop. At 6 months she had not rolled over yet, and the lack of muscle tone and movement of legs seemed to be interfering with a lot of her developmental milestones. It was great! They gave us a series of exercises to do with her, and showed the teachers how to hold her and help her. In 10 days she was already rolling over both ways and now we can't stop her, she goes everywhere by rolling over, and is much more active and mobile! I am very thankful for the caring teachers at Childtime! They were the ones that made it happen, their support and encouragement along the way has been amazing!

Well, I know I promised to post more pictures, but as the title of the blog says, I have just been very busy. And I also need to start posting more about the other busy part of my life, the older kids! They are starting to get jealous, but Luiza, my 13 year old daughter, said to me that I am too old to keep a blog!!!!!! She was laughing when I told them about the blog, like it was something really absurd! Oh well, I will show her...

I will start including them more, but for now, here are Gabbie's 6-month pics:

Sorry but for some reason all my pictures now are sideways even when the original file is not... Not sure how to fix that! Send suggestions please!

I will post back as soon as we have more news after her Shriner's appointment!

Daycare pictures

We saw the proofs yesterday, and all the pictures look sooooooo cute, I couldn't resist! I HAD TO purchase them! I guess that's what they count on, on parents being suckers when it comes to cute pictures of their kids!!! I haven't received the CD with the originals yet, so I took a picture of the picture with my phone, and ... isn't she ADORABLE?

Pictures

Gabbie (we actually call her Gabi, which is the nickname in Portuguese) is growing too fast! We try to enjoy every little moment we have with her, but they go so fast! Now that she is 5 months old, we want to be able to record the monthly milestones, but I couldn't just start from 5. So I decided to go back and post a picture for the past 4 months too. Here we go:

She was born on Nov 11. Very cool, because she will turn 1 on 11/11/11! And, she was also born at 8:11am, so I guess her lucky number is 11. As I mentioned in the previous post, her legs and feet were very different, all positional, so even dressing her was difficult. And holding her was difficult too. Here is Gabi at 1 month:

2 months:

3 months:

 3 months with casts on:

And finally 4 months: 

Ok, now that we got all that "out of the way", I can start posting about her milestones starting at 5 months! Why didn't I start the blog sooner?????
Now that she is 5 months, we are starting to worry about some little things. Well, at least I am, my husband says he is not worried at all. She hasn't turned from belly to back yet. First, because she HATES being on her belly. But I think it is also because she hasn't had much tummy time before, when she had the casts on. She does not move her legs as much as I see other babies her age do. Again, maybe because of the same reason. She has excellent neck support, but when she is on he tummy, she just cries with frustration.
Her reflux also has not improved. Don't get me wrong, it is MUCH better than before the medicine, but many times she spits up and we have no idea what we did different to cause that. It is a problem in the busy mornings -  I have to give her the medicine (which tastes horrible), wait for 30 minutes (with her crying hungry), and then feed her, wait at least 30 minutes more before I can even change a diaper or put her in the car seat. I've been trying to give her the medicine when she is still asleep, so that she will sleep through the next 30 minutes instead of waking up and realizing she is hungry, that works much better.

We also started solids before she was 4 months in the hope that it would stay down better than the bottle. She is not a very good eater, she eats it but not like my other kids, who wouldn't even give me enough time to get another spoon before "asking" for more. But she is getting there! Yesterday she ate one entire little jar of baby food  for the first time. I will start making my own baby food soon (I hope), maybe she will like that better :-)

Today we get the 5 month professional pics she took at daycare back, I will post them tomorrow.