Friday, July 31, 2009

Just Some Pictures Today!




Nanny and Pappy have been waiting for a nice cool day to take the grankids out for a ride! Bryanna and Austin are new to the blog! They are just 2 of Gracie and Hanna's cousins. 

Thursday, July 30, 2009

This Kid's Hilarious!



Alright, I thought this was the funniest thing. Gracie was standing on a chair that she had pushed right up to the fridge so that she could play with the magnets and look at all the pictures that are hung up on it.
She starts giggling so I was curious as to what she thought was so funny, (and I wanted to make sure she wasn't causing any trouble) so I walk over and ask her what was so funny. Her answer: "hehe Austin's a pirate!"
Haha!! She put the little magnet over his eye like an eye patch! I don't know where she got that!
Anyhow, So I had to take a picture! Oh man...what a kid.

Hmmm...



Well, I have mixed emotions about Toronto. On one hand I'm a little disappointed and mad, and on the other, I'm so extremely thankful.

First of all, the echo cardiogram went good! Aside from the chlorale hydrate they made her drink, everything else turned out good. Hanna has 2 small holes in her heart which the cardiologist, Dr. Menon, a wonderful doctor, isn't concerned about at all. Many babies are born with these holes, but most close up by the time they are a couple days old. For the other few that don't, they close up on their own within the first couple years. He isn't concerned. He did say that her left chamber is a little bit enlarged and he wants to keep an eye on that. But again, said he isn't very concerned. He wants a repeat echo done in 6 months to make sure it's not getting any worse.

Next we had the appointment with Genetics. I didn't mention before that Hanna has unusual thumbs. We found out about 2 months back that she actually has an extra digit in each of her thumbs. (Like a finger). It isn't very noticeable because the extra digit isn't very big, but they are crooked, which is the part that you would notice. Anyhow, this is a red flag telling the geneticist, Dr. Mendoza, another great doctor, that something went "genetically" wrong.

This still doesn't give us any answers. Dr. Mendoza has ruled out all of the most common genetic and metabolic disorders and diseases. This is GREAT news. One of the diseases that he thought she could have is Fanconi Anemia. This is a devastating disease. Thank God it's ruled out.

They are still looking at all the blood work for possibilities of more rare disorders, since they still don't have any concrete diagnosis yet.
But since we're talking about blood work now, let me tell you about the part of the trip that made me so mad!

Get this. Those amino acid results that came back still high, was only ONE amino acid. Yep, there's Windsor for ya. They only retested ONE out of 20 amino acids. We shoulda made the trip to Toronto. We figured since it was just a re-test we could do it local. Never again. Not only did it take 5 weeks to hear anything back, they didn't take enough blood!
We had to put poor Hanna through blood work all over again, because Windsor didn't take enough! They ran out! So this poor baby had been fasting all morning for her echo. She finally cries herself to sleep only to be woken up to have chlorale hydrate forced down her throat only to put her back to sleep. She wakes up with a needle in her arm because Windsor Hospital didn't take enough blood! Nice.
I felt so bad for her.

At least we're yet another step closer to finding out some answers. Dr. Mendoza is pleased with how Hanna is doing, and is looking forward to having the MRI done. That's the last step. He's concerned that her head is so small and wants to see what her brain looks like, for any abnormalities. We can only hope and pray for the best.

Tuesday, July 21, 2009

Maybe Some Answers?

This morning I got a phone call from Toronto to confirm Hanna's echo appointment and to let us know Genetics will see us afterward. This is what I've been hoping for. Now, hopefully they will know what to do next about her amino acids. Anything I've read up about any kind of amino acid disorder always says very clearly "the earlier the treatment, the better outcome". So surely they will start some sort of treatment immediately if it's necessary. I'm just praying that this is the answer.

It's the waiting that's killing me. I wrote about wishing time away in a previous post, and it's soo hard not to do that when I'm constantly waiting for answers. But this is good. I'm ready to hear what they have to say and I'm willing to do anything to get my baby girl on the right track.

All of your thoughts and prayers, again, will be appreciated during our trip to Toronto.

Tuesday, July 14, 2009

UGH


Okay, so 5 weeks after we had Hanna's blood retested for her amino acids, the results FINALLY came in. They called me this morning and they are still pretty high. I'm looking at this as a good thing, because this could be a reason why she isn't growing normally. Oh please God let this be the answer we've been waiting for! Hopefully treatment will be as easy as a change in her diet....But I won't hope for too much!
We'll know more when we go to Toronto, I'm hoping we'll have an appointment with Genetics again to go over the results when we go to have her heart echo done. Please keep her in your thoughts and prayers.

Saturday, July 11, 2009

Ahead of the Game



Okay, so Hanna has had Jodie, from the CNIB (Canadian National Institute for the Blind) come by a few times so far to the house to help teach us how to work with her and give us new strategies, etc, on how to make the most out of the vision she has.

Ya know what she told us? Not much! She is so impressed at where Hanna is right now, she doesn't have any goals to give us for her, because she's already doing everything she'd be working on with her! So that made us feel good.

I think maybe we push Hanna harder than we would normally, because we know that she will be delayed in some areas...but whatever we're doing, I guess it's working! CNIB even have some of the same toys as we have that they lend out to families. Do we know what we're doing, or what?
Not at all...but it sure seems like we're ahead of the game, and so is little Hanna. :)

Jodie also brought me a pamphlet for little sunglasses for Hanna. We can't seem to find any that will stay on her little head! It's an interesting website anyhow, because the sunglasses are made specially for preemies, infants, toddlers, and very petite adults. But guess how much they want you to fork over for a pair of sunglasses your little one is going to grow out of! $60! I don't know about anyone else, but I think I'll use the little goofy ones from Wal-Mart that cost me $4 instead. It is something that will be necessary eventually for little Hanna, because her eyes are very sun-sensitive, but I think I'll at least wait until she's out of the "take this thing off my head and throw it on the ground" stage.

So anyhow, for anyone interested in these sunglasses, the website is really neat and there's a big gallery you can look through as well. A lot of their products have no metal screws or parts, so that's a big plus too!