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!