We made it one year!

Well Maggie made it one year! She is doing amazing. At her check up she was 14 lbs 10 oz and the doctor just kept saying how amazed she is at how strong Maggie is, even her upper body is so much better and stronger then it was even 2 months ago! She gained 1 lb 10 oz, so we are glad she gained that weight but we are working on getting her to gain a little bit faster! She is getting arm braces to help her crawl since she is already crawling her her legs, she just needs that support through her arms, we are going to try them out this week so I am really hoping that works! It would be amazing to see her crawl. She is getting glasses sometime this week, so it will be really great to see how much that helps her see things and interact! The doctor also said her teeth are definitely coming in, they are close but her whole mouth is swollen right now so that is why she won't get her hands out of her mouth! I feel so bad, but I do really miss my sleep. It is pretty amazing at Anchor Center (the school for blind and visually impaired children that Maggie goes to) when she is playing in the light room or in the music room, or really any of the rooms, she actually doesn't put her hands in her mouth because she is listening and interacting with the other children. Yesterday she was talking up a storm! They were all watching and listening to her. Then another little boy was talking with her :) So cute! I am looking forward to so many more good and proud moments!

Anchor Center

So this morning we went to the Anchor Center for Blind and Visually Impaired children for her evaluation. We got there and the first thing we did was her eye tests. They take these HUGE gray boards that have these black and white stripes on one side of it. It goes from the black and white stripes being REALLY thick to REALLY thin depending on the board. So the first board would have been 20/1400 vision (legally blind vision is 20/200 just for comparison value) and it took quite awhile to get her to look at it but she did, then the lady went on and we finally after she really started concentrating got her to see 20/670. So she can see between those two. She can definitely see which is a good thing but the best she can see right now is 3 times worse than legally blind. After that I went on a tour of all the different rooms and learned where to do everything when we are there. We will be going monday and wednesdays 9-11am for therapy. I am very excited about this. I am so glad we caught this all so early, that she is getting all the therapy she needs to succeed and develop as well as she can. The lady also said that she can definitely see me and my face. She really reacts to looking at me and my facial expressions. Then she put her in a little box type thing (like literally a wall box that has an opening) which has all these different hanging toys and the only rule is that you can NOT help her touch anything in there. That is her learning time for JUST her. Most babies can last up to 30 minutes in it, she played in there for an hour! She is so interested in seeing things, she just can't see very well but she is definitely a fighter and just keeps on trying! They also have a PT there too which we will use but continue with our actual PT as well. They work on different things so she is getting lots of work going on and the more she does the better she gets! They also said she is going to be a talker! So we might have another Nana on our hands! As I have researched more about her chromosome deletion, there are only 9 people out there with the homozygous (comes from both sides, she got hers from me AND Chris not just one of us) her symptoms are not nearly as severe as most of those kids are. Most of them have severe hypotonia everywhere (she only has it in her neck and arms and that is mainly because she couldn't see, shes already getting a lot stronger in her upper body) and brain problems (which she doesn't have) and seizures that can't be controlled with medications which her seizures are now controlled so I am trying to stay positive that she won't have severe mental retardation or severe autism. When she was on her tummy this morning she held her head up for 30 seconds STRAIGHT without falling down! That is absolutely amazing and the LONGEST she has ever been able to do it for! I am just so proud of her, I know this is going to be an extremely long probably never ending battle for us but I know we can handle it with the love the Lord has for us and the love our family has for each other. I want to thank everyone for their support through these hard times, as I am sure there will be many more as well. You all mean so much to me.

Update

So Maggie has been doing really well with her new PT. She is lifting her head up pretty high on her tummy but it is still not staying up for a period of time. Just up and down. Every day I hope this is the day that she will be holding her head up, its just such a long process and it takes so much out of you emotionally. If you put her on her back when she gets bored she will roll to her tummy and then gets very angry that she is on her tummy. She has gone tummy to back a couple times, but not very often, usually just screams. I am so proud of my little angel and I know she can actually see and I really hope the ERG goes well and whatever is wrong with her vision is fixable or at least doesn't get worse. I feel so blessed and lucky for her to be as healthy as she is but just can't stop thinking about how emotionally draining it is. I just go through the daily motions and then eventually it just wears on you. Being a parent to a special needs child is very very rewarding but also very hard. I never thought this would happen to me, but it did and I am doing the absolute best I can. I love this little girl so much and wouldn't change anything in the entire world but I have realized I have to stop comparing myself to cases worse than her. Not to forget babies are worse than her, because of course I know there is those also. But I am always saying well its not that bad, it could be worse. I need to realize that I am going to have extremely hard days, and that is ok because the good days are worth it. And I work very hard on these things. My favorite time of night is seeing all my angels sleeping peacefully and knowing they are safe and loved as much as possible. I just keep having to jump through the hurdles and soar through some more hurdles! The strength Maggie has is absolutely incredible and I am happy to say that I know she got that from both her mom and dad. We are such a strong happy family and I need to remember that on the hard days :)

I forgot!

Maggie is gaining weight very well and she is also getting a tooth in! She now knows how to put her hands in her mouth! And grabbing her own hands and shirt. She is amazing <3

Update

         Just wanted to update everyone on what has been going on. We found out recently that Ariana and Chris also have the microdeletion which means if we do ever decide to have another child we have a 50% chance of the child having the microdeletion on one side, 25% of having it on both sides (like Maggie) and 25% of not having one. Which as you know, is a very high chance. That's a long ways away but I always worry about things like that! 

      Maggie also had a repeat EEG a couple weeks ago and that showed that she wasn't having as many seizures but she was still having seizures (obviously) so they put her on a new medication and it seems like it has helped her SO much. She is a LOT more active, she looks at people, she kicks and moves around a lot, she is rolling over back to tummy, and she is really truly starting to lift her head up! Everyday this little angel amazes me :)

      We had physical therapy for the first time today with the new person from Early Intervention and I just have to say I absolutely LOVE her. She definitely knows what she is doing and I am super excited to see her next time! She showed us exercises to do with her on the exercise ball, she showed us different things to do on her tummy, and also ways to get her used to using her arms as well. She said she is doing awesome and she can tell she is listening and looking at her the whole time she is talking to her which is saying a lot for a 9 month old! Maggie smiled at her a couple times as well =) I can't wait til next week and see what more we do! 

Well, I finally found out...

So, I finally got the e-mail back on Friday that I am indeed a carrier of 15q13.3. It's so weird knowing that there was part of my chromosome that was missing and that was the reason I had all these problems in my life. I wish I would have known sooner but at the same time, I am glad I know know. It's very upsetting and sad for me to know it actually came from me, as much as I had expected it might have, it actually happening that it was me just puts me in such shock. I know that I didn't know about this and therefore didn't put my daughters through this on purpose but it hurts. The whole reason my daughter has seizures is because of me. My poor little baby girl. She's so perfect and she won't remember any of this which is good because I would never want my kids to see me upset, but I just feel like bricks just keep falling and falling on my head. The doctor did say I had one abnormal gene and she had two so she is talking to the geneticist this week to see what exactly that means. I have a pretty good feeling Ariana might have it as well. So now I have to take my girls in and also get them tested. It would be nice if I had someone to talk to but I don't think anyone knows what to say to me so nobody really talks to me about this. I have been praying and praying and that helps very much but hopefully someone will ask about this stuff because at this point I feel insanely alone dealing with all of this. I just wish I could help her...

Gastroenterology appointment!

So we went and had her GI appointment today because she has been at 12lbs 12 oz or under for 2.5 months now. I was pretty frightened because I didn't know what to expect, you would think I would be used to specialists but I am just not! My mom went with me which helped a lot :o) Anyways, we got there and they asked us all these questions about meds and such which was ok. Then we got her on the scale and last time she was weight 10 days ago she was 12 lbs 10 ounces and today she was DUN DUN DUN 13 lbs 1 oz!!!!! I was so excited! I seriously almost did a jig in the hallway. I refrained because I didn't want to scare the nurse away ;) Anyways, we get in there and the doctor came in (who I REALLY liked for once) and talked to us about what could be done. He said right now her intake is really good and shes pooping 1-2 a day which is fine so if she keeps not gaining weight then we can do an endoscopy to rule ANYTHING out in her GI and then if that came back normal and she still wasn't gaining weight then we would have to do tube feeding at night which I am REALLY hoping we do NOT have to do. That just scares me so much. But he made it sound like we didn't even need to be there so I am trying to be very hopeful that we won't even have to do the endoscopy! And she GAINED WEIGHT! She also has been rolling over a little bit this week and today at the appointment she was moving around like a crazy girl :) Now if we could just get her to hold that head up consistently we would be doing great! The only thing right now we are doing is adding more calories to her bottles, so instead of 2 scoops per bottle she gets 2.5 scoops per bottle. I am so proud of my little girl! I know we still have such a long way to go, but I am so hopeful now! And she has been doing so much since they increased her dosage of one of her seizure meds and she hasn't had a seizure for a few days! She actually was cranky last night and I couldn't figure out why! Luckily my mom was coming over to pick up Ariana to spend the night so she told me to give her some medicine and my mom held her til she fell asleep! How sad is it that I don't know what to do with a cranky baby! I am so used to her just sleeping and not crying, I will be happy though if she does more and is cranky sometimes! Just wanted to update everyone :) Love from me and Maggie!

Early Intervention

So I finally had my daughter fax the referral form to Early Intervention. If you don't know what that is, it's a place  through the state that gives you PT, OT and any other services you need for special needs/developmentally behind kids ages 0-3. They have it for older kids too but at that point you get on a wait list. Anyways, my doctor sent that in last night at 6pm and the lady called me today! I was so excited to hear from her. She asked about Maggie and I told her everything and a coordinator from the school district will come out to give her a test to see where she needs help and the really nice thing is because she is visually impaired as well they are programed with Anchor which is a place for the blind and visually impaired so we will get some to come out to our house to work with us on visual things and ways to get her to learn not just using her vision since it is so poor! I am really excited to get this started.... And then I put her in the exersaucer today and she actually grabbed at two different toys! It was amazing!!! :D Another toy makes noises and she just kept laughing and laughing at it! I am just so amazed at how much she learns day by day with all the challenges she has in her little life.

The beginning until now

I have three wonderful daughters who I love very much and one is destined to be a strong lovely lady. She was born on September 14, 2010 with absolutely no problems at all. She was one of the most precious babies I have ever seen. (A tie with Faith and Ariana of course ;) We did notice at first she slept a lot but it was the newborn stage so I thought maybe we just got lucky... Then around 4-6 weeks we noticed she wasn't looking at anyone or anything, just up. Always up. Or sleeping. So I figured, well maybe her eyesight is just slow. At her 2 month appointment I mentioned it to my doctor who also was worried about it and that is where it all started...
       We got our referral to go to the Ophthalmologist and we were worried but I Figured nothing could happen right?? She is perfect, my other two daughters were perfect so why would anything else happen?! So we got her checked out and her eyes were all normal but she could not see and would not react to light. I remember thinking okay she is blind... We can live with that, but he didn't seem to think she was blind. He just kept saying delayed maturation. So we made another appointment for a month later to check again. That next appointment I was really thinking she was seeing things! I could have sworn to anyone that she was looking at me and at her daddy and she was smiling, but she wasn't smiling at us.... We went to the next appointment and he said she still was the same as before and he thinks it would be in her best interest to get an MRI done and to talk to a neurologist....
      We go to see the neurologist and he seemed pretty nice, he did tests and she had low muscle tone but other than that everything was normal, except of course the random eye sight. He decided it was a good idea to order an MRI with cat scans. I figured oh it will take awhile before we go do that but nope, within a week we made an appointment. I don't think I slept at all the night before... I got up in the morning and went to the hospital to get her checked in. I was so frightened but I knew I had to do it. We get there and just talk and they weighed her. Then I had to put her in a hospital gown and I got to hold her while they took her in. They let me keep holding her while they gave her the anesthesia. That is something I would NEVER wish upon anyone. She had tubes in her to help her breathe and then they put this laughing/sleepy gas on her face and her eyes rolled in the back of her head and she just stopped moving. At that point I had to leave which was for the best because I was about to lose it anyways. I waited 3 hours and then they let me go back and see her. I was so happy everything went ok! Then I talked to the doctor and he said everything was fine on her MRI, so it wasn't that and maybe it was just delayed development. I was extremely relieved at that point.
     Then only a couple weeks later she had about 10 seizures within 2 hours so we rushed her to the ER and then had to take her to a different ER and they did an ERG on her to check what her brain waves were doing and so she was confirmed to have epilepsy with partial complex seizures. A four month old with seizures! What happened to my perfect little girl?!?! How was I going to deal with this, how would this affect her life for the rest of her life?? I didn't know anyone with seizures... The fact that she had to be on medicine twice a day probably for the rest of her life scared me to the point of wanting to run away for a week or two to process this. I just kept wondering how did this happen?? What did I do wrong?! I finally got the answer to that not too long ago...
      At our next neurologist appointment he asked if we did genetic testing and I said no (which I thought was weird they didn't do blood and genetic tests in the first place) so he ordered a bunch of tests. The first three he ordered all came back normal or close to normal limits so I was thinking the last one would be fine too... Then everything came crashing down when my husband got into a car accident and was in a medically induced coma... I couldn't even think about Maggie's problems because she was alive and happy, but Chris was not... I spent two weeks in the hospital with him and now he is completely recovered :) Anyways, I called the neurologist when I came back home and he said he wanted to meet with me in 5 days to discuss the findings. At that point, I knew something was wrong. And I just kept thinking how much bad can happen to me in this short period of time?! So I called our family doctor and she told me the name of it. Maggie has a partial chromosome deletion of 15q13.3, now you may not know what that means because I sure as heck didn't when my doctor told me but luckily I have google and we have a love/hate relationship... All I know is that there are tons of different symptoms that she could have. She already has the seizures and impaired vision, developmental delays, and she could also have autism, ADHD, mild or moderate learning disabilities, mild to moderate mental retardation, bipolar, anger problems, social problems, the list goes on. She could have none or all of these. According to my neuro there are only 9 known cases in the US. That is NOT a lot to be compared to. I live with this every day, I wake up just thinking shes going to be better. I have dreams that she is a normal 8 month old and crawling and holding her head up, babbling, playing in her exersaucer. But that is not my life. My life is waking up and giving her two different medicines in the morning and doing her exercises with her every day and hoping she can see and her vision gets better. Same with night time. Do I love her any less? Definitely not. She is the most amazing person I have ever known and she is only 8 months old! I would do anything in my power to fix her but I can't. I know God doesn't give us anything we can't handle but at this point, I wish I couldn't handle so much! Within a week I should know if she got this deletion from me or not and then we go on to test everyone else. This is a short summary of what my last 6 months has been and I look forward to sharing with my friends and family and anyone who is interested of our journeys through this and how true love really can shine through.