Thursday, April 09, 2009

A few updates...

Wow, what a few weeks I have had. We seem to go through appointments every 3 months, and when there is one, there are many to follow...that is how the last few weeks and next 2 months are going to be for me.

We had Faith into the pediatrician on Monday and she is doing ok, not as good as they would like, but not as bad as she could be at this moment. How much to say and how much to keep to myself? I am still figuring that out, but for sure she is not gaining weight as quickly as they would like and is definitely fallen off the bottom of the curve. We have tried everything and nothing has been working, so now she has been prescribed Pediasure. Lucky for us we live in Canada, which means that the government pays 100% for it...I could not get over the $40 cost for a case of 12...that will only last us 6 days...could not afford that cost at all!! So, don't ever complain about our country!!

We are hoping that this will put the weight on, if not we will have to start doing some testing to see what is happening.

Her head has not been growing and has bottomed out as well, and apparently that is a sign of brain growth. They are not too concerned, because she seems to be meeting milestones, just a little behind, but meeting them. I confirmed that there was a diagnosis of hydrocephalus and the dr said that the wording in the report was a little confusing, but whatever is there is very minor and they probably won't be doing anything about it.

She is getting tubes in her ears at the end of this month and hopefully that will help her balance better when walking. She falls all over and is quite is cute and all, but does create a lot of problems.

I had told the dr about something that happened on Sunday and she said it was probably another seizure. Her right eye went up towards her hair line and started shaking, like the nystagmus, for about 2 minutes and then it stopped. If I had known that it could have been a seizure I probably would have taken her to the hospital to have it recorded...but seizures seem to be so different, from shaking to just eyes...I have no idea now how many she may be having that we just don't know about...We go to our neurologist appointment in 2 weeks time. I can't wait!!

Then there is the part of me that feels crazy...and I told the dr this. I just have this unsettled feeling that there is something more going on with Faith. I haven't taken her to dr's to check it out, I don't want to be accused of attention seeking. She seems healthy and fine and progressing nicely, but I am home with her all the time. I see things that others don't see, and I have been seeing these things a lot more lately.

The dr reassured me that I am not crazy. That moms sometimes can know things before dr's, because we know our kids best. She listened to me, which was nice, because I feel as though if I talk about these things with friends or family they really won't hear what I am saying. I always hear from them that she is fine and I shouldn't worry. But this isn't even worry, I can't explain the feeling...

Some days, Faith checks out. I look in her eyes and she is not really there. Physically she is, but really she is not. I can explain it off as she is just overtired some days and is daydreaming.

Some days, Faith doesn't walk as much as she could...she would rather crawl or walk on her knees...I can explain that one off too, she is just learning to walk. Only for 3 weeks now and is just continuing to practice and learn how to be more steady.

Some days, Faith is seriously grumpy. What 18 month old isn't sometimes? But I am talking about really grumpy. She will not sit or stay anywhere unless it is on a lap...those are the days that she will nap most and it is nicer when she naps instead of having to deal with it...then there are the other days where she is the sweetest cookie in the tin, and melts us with her smile...emotions are up and down. But again, it could just be her age.

Almost every day, Faith is so aggressive...she takes down her 3 year old cousin...seriously, I am sure you could see those moves on WWE (or whatever it is called now). But she doesn't flinch when she is punished in those moments...she usually laughs...explain that off as 5th kid? This is more then I have ever seen at this age...

I could go on and on, there are so many things that just don't add up, like there is something we should be dealing with now so we don't get stuck is hard to explain and hard to admit that this is how I can I keep "faith" when I question so much? But how can I ignore certain signs and cues? How can I ignore my "gut"? I have been for a few months now, but I really can't anymore.

The dr says, the scarring on Faiths brain is in the frontal left lobe...and these are some of the signs of that injury. We will just learn more in a few weeks, but I should be talking to the Infant Development people to start doing their testing on her for develpmental sounds so horrible, but we can't fix anything if we continue denying things.

So, there is my update, my struggle, where my faith is sitting and where Faith is at. That is just a miniscule part of what is going on in my life right now...but it feels so huge!!

I gotta run now, naptime is over and it is time to relax and get ready for Survivor...then Hells Kitchen and watching the end of Americas Next Top Model, since I fell asleep at the voting off part...goodnight all...


  1. Hi Ruth,

    I just read your blog, some of the things you are describing in regards to Faith could be seizures and or the after effects of them..if she is on meds that can effect her too..just a thought..I will be praying

  2. I don't think you're crazy...sometimes we have to go with our gut feeling. It's better to get things checked out then to ignore.

  3. A mother's intuition is a very real thing! I think you're wise to share your concerns, even if they're hard to describe. You know your baby better than anyone.

    My heart is with you, Ruth. You'll get through.

  4. feelings with our children I think is a natural instinct and should not be overlooked! I am glad you talked to the Dr about it! While holding on to "faith" we need to know we have to deal with what is true! I am walking this out with Jason right now too, so I TOTALLY relate to what you are saying. I write things down so that when we go see the neurologist I don't forget and I mention everything....some little things have triggered her to looking for other things, so ALL information is important!
    you are a great mom and you are doing an amazing job!!