Write on posted a comment on one of our threads on Maddy's albinism and I wanted to tell them some more things and didn't know another way because we don't have contact information. Anyways...
Thank you so much for commenting on our post I am sorry that I used the word albino. I had talked with others that have albinism and that is what they referred themselves as. I will get better about not using that though. Our pediatric opthamoligist said she had incomplete albinism but we then researched as soon as we got home and realized that is an outdated term and so we no longer use that. I did find the NOAH the same day we found out about her and I have loved it. It has been a great site for information and the community boards are wonderful! I know that it isn't the end of the world but it still is something that is hard to get used to. It isn't because of what she was diagnosed with it is just because I know that my precious baby is having trouble right now. She does have nystagmus and she can't focus on anything and therefore she is behind in some things. I do also think she has strabismus but the eye doctor didn't mention anything about it. We have pictures of her that show one eye one way but the other different.
Do you think that we should get her tested to find out what kind of albinism she does have or just not worry about it. I do feel that it affects more than the eyes but the eye doctor said it was "incomplete albinism" so he meant just affecting the eyes. I am starting to second guess whether or not we should go to another eye doctor but I don't know how to go about finding a low vision one in our area. Also, should we contact early intervention, some people have said we should and I just don't know what to do. Any of your thoughts would be great, I just want the best for my baby. She is soo beautiful, I don't know if you have seen any of her pictures. I am thankful for her and I wouldn't change her.
I'm not wearing any shoes today. It wasn't exactly voluntary. The story behind it isn't as interesting as you'd think, but the fact remains that here I sit at my desk at work... with no shoes on.
It's fortunate that I work for a small company where no one cares, and they're used to me being weird anyway.
Yesterday I had the had the scariest moment of my life. Madison was having problems with her bottles all morning. She ate at 4 am and didn't eat again until 3 pm. She acted hungry around 8 and 12 so I tried to feed her. At 8 she would take a few sips and then cry, she refused to drink the bottle. She did the same thing at the 12 bottle. Well when she was drinking a little she choked. Her eyes rolled to the back of her head, she turned blue, and her body became weak and almost weightless. She snapped out of it quickly but it was scary. She is doing better now but she still has a cold or something that is getting her down. She has been up almost all night coughing. I love these girls so much, I couldn't imagine loosing one of them.
WHY do smoke alarms always start chirping about their dang low batteries in the wee hours of the morning? This happened again this morning for the third time in the last few weeks. This time it was the one in our bedroom, so I had to haul out the big mama ladder since the bedroom has a 12 foot ceiling. Ugh.
Well, we're all a little sick. It seems to be some kind of cold/stomach bug... each of us has it with slightly different symptoms. So far it's not severe enough that anyone has gone to the doctor, and it's been with us long enough that it should be on it's way out in the next couple of days... any... day... now... :-)
Maddy ate a whole serving of rice cereal with no problems. She can't see the spoon so I have been having problems getting her to eat it but today when I would put the spoon on her mouth she opened and ate it. I am so excited, hopefully this continues!
Emma is starting to repeat words that we say. IT is so cute, the other day I said "Don't scratch" now Emma says it all the time. I am so amazed at how much she is learning and growing. I am a very proud mommy.
...but average around here is better than most days anywhere else. :-)
Maddy's MRI came back normal! The only other thing we need to do is an EEG to make sure she isn't have seizures. If that comes back normal then her nystagmus is just a symptom of her albinism. Our doctor doesn't think she is having seizures or anything but that is just the next thing they always test for. Our doctor was great, he called us Friday evening while he was on his way home. The actual doctor called us, if you need a new pediatrician ask me and I have a great one for you! We are so thankful that she doesn't have anything more serious going on. Don't get me wrong having albinism is something serious but she can learn to live with it and adapt to it. She is an amazing baby and she has a long life ahead of her. She is behind in some areas but that is ok because I get to keep her my baby baby much longer :)
The MRI is over. They had to put Maddy to sleep and do the MRI while we waited in the waiting room, but she woke up just fine. We're home. She ate just now and is napping, but she's been her usual self and we even got a few smiles out of her. So far no side effects from the anesthesia, but it's only been a little while. Grandma and Papa came and waited with us and helped watch Emma. Hopefully we'll know something today -- but maybe not until Monday. They say there's a good chance we'll get a call today though. It's nerve-wracking to know that we may wait all day today and not even get that call. Casey and I are hoping for the best and dreading the worst. The most awkward part is that we don't really know what the "worst" is. We weren't told what they were looking for specifically, other than a cause of her vision problems besides just albinism. I'm not familiar with what those kinds of things could be, but any time a brain abnormality is being investigated it has to make parents nervous.
I know I'm needed at home today, if we get a good call then that'll be great, but just in case they find something I know I need to be here to be with everybody.
We go in for Madison's MRI of her brain tomorrow morning at 7 am. They have to put her under anesthesia... possibly completely to sleep in order to get a good picture. We don't think we'll know anything about the results until the afternoon, maybe not until Monday. I plan on calling the pediatrician's office after the MRI to find out when we should hear from them. I feel like I'm on pins and needles, I don't know what to think.
Well, Maddy had a check up yesterday because she has decreased the amount she is eating. Her doctor thinks that is because we are adding rice cereal and the extra calories are filling her up. He also wants to get a MRI of her brain to make sure everything ok. He is no longer ok with her crying as much as she does and he thinks their maybe something more to her eyes roaming back and forth all the time. He is a wonderful doctor and I am so thankful we found him, he actually spends time with us and doesn't rush us. He actually held Maddy for the longest time just watching her eyes and listening to her cry. He then took her to another doctor and explained her situation and asked his opinion, they both agreed on getting an MRI. I am not sure when the date will be but I will keep you updated. He also said that we are great to work with and we are very reasonable and I replied and said yes we are the annoying parents that are always calling and here. He then said no, your daughter is not doing normal things and everything you come in for and call about is something that needs to be addressed. Wow, a doctor that cares and doesn't think we are crazy!
Emma is doing well, she has started giving me kisses all the time. This morning we were playing and she gave me 14 kisses for the fun of it. She is such a cutie!
I'm already listening to Christmas music... is that sad? If so, blame my iPod. It randomly started playing it for me yesterday. I can't get enough of Harry Connick Jr.'s "Ave Maria".
Through God's will I am provided great opportunities. At work, I create. I take a design that I or someone else made, make finishing touches, and implement it. Sometimes I design and implement everything down to the last detail, other times other people come in and work on certain features. I can have a powerful effect on the task at hand, but without the gifts I am given from God it would not be possible.
At home, I have a wonderful family. We each have our own special features... God created each one of us before we were even conceived, from the overall design to the tiniest detail. We were all designed to be together. He had no help, and the result is exactly what he intended when he started out. There are no bugs, nothing unintended. It's not for us to understand why certain aspects of each of us seem short of perfection, it is what He meant to do and what He has a plan for.
I cannot change the plan that God has, nor do I want to, although I have to admit sometimes I forget that. When I see something that seems negative I want to fix it. I don't want anyone in my family to have to live with anything short of perfection. However, God knows exactly what he is doing, and I need to have faith that He will provide everything that each of us needs to deal with any difficulty we have in life. For all of these things that God has provided I am happy and thankful.
Well, Chris wrote that Madison was an incomplete albino but the more we research and look at her we think she may be a complete albino. Her skin is very fair, she has white hair, eyelashes, and eyebrows, and blue eyes. Most albinos have blue eyes only extreme cases have red or violet eyes. We never thought anything about how Maddy looked, we always knew she was very fair and her hair was really light but we didn't think anything of it. Now we know!
