Cole and the Chief of Neurology

Today Jon and I took Cole for a meeting with Dr. Chugani, the Chief of Neurology at Children's Hospital. He does not believe that Cole is having complex seizures (hooray!). His opinion is that his episodes at night are night terrors. I am not convinced of that quite yet.

Here is the new plan for my Mr. Man :)

He is going to be getting a 23 hour EEG. This should show if he is in fact having any kind of seizures. He is also going to be getting a Baer test. From my limited understanding, this tests the nerves in his ears leading to his brain. He has trouble with speech, and he sounds like a deaf person sounds when talking. I apologize if that isn't the politically correct way of describing it.

From there, the doctor wants him to have the same genetic testing that his genetics team wants him to have. The very same testing that our insurance company has denied twice already. Ugh! Tomorrow we will be placing another call to the insurance to see how we can make this work! The test is called a comparative genomic hybridization. This test will detect unbalanced chromosomal changes. The neuro doc mentioned a test called a microarray so we will mention that to Cole's genetics team when we meet with them later this month.

I should know the schedule for his EEG and Baer test within a week or so. Hopefully they can squeeze him in somewhere soon! The nurse told us that they are scheduling 3 weeks out. That isn't horrible, it took us 3 months just to get into see the neurologist today!! Lucy and Cole go back together for their update in October. She also goes next Monday for her MRI.

Once again, thank you all so much for the continued prayers for my sweet babies!

A long overdue update on The Foster's!

Man it's been forever since I've last updated. I'd love to say that I update my other blog much more, but I don't do that either!

Let's get straight to it, an update on the crew!

*Owen*
My big man starts kindergarten in the fall. Only a month and a half away. We went shopping at Target today and he tried on all different kinds of backpacks. There was my baby, all excited about going to school and getting a new back pack, and there I was, crying like a little baby in the middle of Target. I had a moment of sheer panic. This little boy is almost 5, and he has spent every moment of every day with me. Even when I worked he went to the childcare that I worked at! I saw him whenever I wanted to or whenever he needed me. Does this kind of sound like I am worried about how he is going to do without me? It is quite the opposite. What am I going to do without him? I miss him so much already. He is going to love school. I am going to be okay, right mommas out there who have been through this?! I cannot believe my baby, my first born, is going to school! Time goes far too fast.

*Lucy*
Little momma is such a girlie girl. She loves to wear dresses and pretty sparkly shoes. But don't ever try to mess with her hair! She looks like the wolfman most of the time. On the rare occasions when she allows her hair to be done, she half yanks it out in about 15 minutes. That's my girl! She knows what she wants. She is talking so well now too. She can speak in a few word sentences, and she will pick up anything new that you say in front of her. That has made for some pretty funny conversations with her!
She will be getting her first ever MRI in August. She has a tremor and the neurologist wants to make sure it's nothing big going on. I've been having a bit of a rough time dealing with it, but I keep trying to remind myself not to worry until I have something to worry about. Easier said than done, right?!

*Cole*
Cole is on summer break from his therapy, so he's been able to mellow out and relax a little, which has been nice for him. He is really starting to say words now too. His favorite to say is cookie (he takes after his momma with his love of sweets!). He says it with this little squeal in his voice and it just melts my heart! We are still in limbo with a diagnosis for him. He meets with a new neurologist (the same one Lucy now sees), and he meets with his genetics team again next month to see where we want to go from here. He is such a little champ! He still has trouble with his sleep. He screams on and off all night long. His pedi thinks that he may be having complex seizures. He wants the new neurologist to do an EEG on Cole. I am relieved that somebody wants to do something! I feel like the waiting game just keeps going and going and going. I am glad that everything we have checked for has been negative. I really am. But that sometimes makes it even harder to know that something is wrong with your baby, and you have no answers to it at all. BUT, Cole is amazing! He learns new things every day, and he is just an awesome little dude :)

*Me*
I've finished school and am now working as a medical assistant. It is in my plans in the near future to take my certification test. I eventually want to become a registered nurse. I have also been having thoughts of becoming an EMT. Who knows! I think I am really just a life long student and I will always want to go back to school for something. I have been dealing with an amazing amount of stress lately, and it's been rough, but I know it will get better. Who knows when, but it will :) Jon and I take every day one day at a time, and that is working for us and our family. He is working an intense amount of hours, so the time we do get to spend together is awesome. We are going on a midnight date to see the new Harry Potter movie tomorrow. How lucky am I?! I can't wait <3

Bullying

I feel convicted to write this blog about bullying.
I've been bullied. A lot. I've been called names. A lot of names. Some horrible, and some just plain stupid. All of the names had to do with me being fat. I was even bullied in college.

I've been called a fat pig. A worthless piece of shit. I've had people write plus size power on my dorm door when I was away at school. I've been called fat more times than I could ever remember.

I remember each and every incidence of being called names. Sometimes it came from someone I didn't even know. When I started 9th grade I was walking around a corner at school and I accidently almost ran into a guy who was coming the other way. He called me a fat bitch. Lovely, right? I don't know how much this name calling has played into my self esteem, but I can say that I am very conscience of my appearance. I always feel fat. I always wonder how awful I look in something that I am wearing. I have lost and gained and lost and gained weight for years. It is a nasty cycle. I am working on breaking it.

At this moment in my life I am under an immense amount of stress. I cope with that by eating. Not good for me or my waistline. I sometimes wonder what people are thinking, and if they are calling me fat in their heads. Ridiculous, right?

I guess my point in all of this is, don't bully. Don't call people names. Not only is it mean, but it can really effect a person's life. Teach your kids not to bully. Teach your kids to stand up for the victim being bullied. It only takes one person to make a difference. I am doing my best to raise my kids to be that one person.

Update on Cole and genetics

Ahh it has been so long yet again since I have updated!

Cole went to another genetics appointment yesterday. It went very well. He has pretty much been cleared of MPS, which is excellent! The new plan is to test for lysosomal storage disorders, and if that comes back clear, then his doctor will do a complete DNA work up and look for any abnormalities in his chromosomes. He had blood work done yesterday for the lysosomal tests and it will be sent out to a guy in Philadelphia (the doc said this guy is the best!) so it will be about 2 to 3 weeks before we get the results. What a long wait!

Figuring out what is going on with Cole is kind of like trying to find all the pieces of a puzzle. A really big, scattered all over the place kind of puzzle. Because he has the developmental delay, the hydrocephalus, and an abnormalitiy on his lower spine, it makes his doctors questions what is going on with him. If there were just one symptom, they would possibly chalk it up to just a delay, or just hydrocephalus, but because there are multiple things all together, it makes them more concerned.

The nice thing was that his genetic counselor (who is amazing!) told Jon and I that we are doing everything that we should be doing to help him. He goes in for a speech assessment on September 14th, and he goes to his young toddlers group still too. He met with a new genetics doctor too. He was really nice and great with Cole. His old doctor retired. I really loved her, but this new one seems pretty good too :) His genetic counselor is really great at explaining everything to us, and she is great at taking all of my calls too! I start hounding her for test results right at the 2 week mark. I am his advocate, and boy do I take that seriously!

Our new mission right now is to get the approval we need from our health insurance to do the DNA testing. I am hoping and praying that it will be easy to do this and then we can me on our way to finding out what is up with my sweet baby boy!

That is all I have for now :)

I am pretty bad at this blogging business

My new goal is to try and blog at least once a month. Not sure if I will actually meet that goal, but I am going to try!

Life has been very busy for me lately. I am in school full time in the evenings and homework takes up all of my free time. It has been a crazy journey so far, but I am actually loving it! I love learning. I have dreams of one day becoming a nurse. Far in the future I am sure, but it is something that I want to do.

Owen, Lucy, and Cole are doing great! Owen is going through some terrible 3's type of behavior right now, so I am trying to take it one day at a time and trying to learn what type of parenting he needs to help him through this. It is rough, but he is one awesome little man, and he will find his way out soon. Lucy is one sassy little girl. She really likes going after Cole. He is so mellow and kind hearted, he just sits there and she sits on top of him. I have to pick her up off of him! My wrestling little twins!

Well, this is all the time I have for right now, perhaps I will blog again soon!

Thoughts on a Saturday night

I don't know where to begin. I am having a ton of thoughts right now, and trying to put them down on paper, or screen in this case, is giving me some difficulties. They are all jumbled in my head. I have been feeling angry and mad at certain situations in Jon's life right now, and I don't like the feeling of having anger in my heart. It takes a bit away from me, if that makes sense. It takes more energy than I want to give it. My problem is letting it go. I have never been one to let things go easily, and I am constantly trying to work on that. It is a struggle. One that I hope to overcome one day. I don't want to get into the situations here on this blog, mainly because they don't actually have anything to do with me personally, but with Jon, and I feel this overwhelming urge to protect him from it, and I can't do that. I can't. This is something he has to do on his own, and I am afraid that he won't, and it is not a healthy choice for him to make. I am working on being supportive and quiet, something I am not very good at!

Life has been very busy for me. School takes a major amount of my time. I like school, but I feel so worm out. It is a lot more than I thought it would be. The cool thing too is that I am meeting a lot of pretty neat people at school, and I have a good time socializing with other adults. I don't get much of that at home.

On to some big news---- My baby girl is walking! She is so cute. She holds her arms in the air and gets going. She makes her momma so proud. My baby boy is crawling around like a mad man now too. He is so precious! He is also starting to cruise on the furniture, so that is pretty amazing to watch! He is getting another MRI in a few weeks, and then it may be on to surgery to place a shunt for his hydrocephalus. I am very nervous about it all, so I am taking my time to think on it and see what this MRI shows, and then I will form more thoughts on it. I am working on taking everything one day at a time, but I can't help that sometimes many days jump on me at once!

Owen has been growing by leaps and bounds. He is such a smart little dude, and let's not forget how sassy he is too! He has a love for art, and really enjoys coloring and painting, which includes using the walls as his canvas, which does not make his grandma very happy.

I know not many people read this blog, but if you are reading it, say a prayer for my mom please. She is having a rough go of it lately, and could really use the thoughts. She is struggling with finding a job, and it is adding a lot of stress to her already stressful life. She has the weight of the world on her shoulders right now. I know that God will provide, and I know that we will be alright. :-)

So many new things are happening...

So, it has been around 2 months since my last post! It has been a whirlwind of things going on since then. Jon and I are trying to work on our marriage, and we are each seeking individual counseling at this time, with marital counseling in the future. It all came out of nowhere, but I am taking it one day at a time and moving very slowly. He has told me that he has so much guilt over what he had done that he couldn't face talking to me, and that he didn't think that I would ever be willing to go back with him. I have really great days where I am so happy that we are trying to work on our marriage, and I have really bad days where I have such fear that he is going to break my heart all over again. I have major trust issues with him, and I am learning how to work through those issues. I have some fear that I will never be able to fully get over what happened. I sometimes wish we could go back 6 months and smack ourselves upside our heads. We both saw this coming, and yet we couldn't get ourselves to the place we needed to be. At this very moment, I am looking forward to our future together as a family, and I pray that God will work through us and with us and that we will follow Him and His plans for us.
On a personal note, I have been feeling very overwhelmed lately. I am now in school to become a medical assistant, and it is so time consuming. I feel like I may have gotten myself in too deep, and I am afraid that I won't be able to climb back out! I am working on my time management skills, hoping that it will help me. I need to learn how to study and do homework efficiently while raising 3 kids and taking care of my responsibilities. It is a daunting task, but I am up for the challenge! It has started to hit me that after school is done in the begining of November, I will no longer be working at the childcare. This has been a hard thing for me to deal with. I love my job, and I love my coworkers, and I especially love all the kids. I was called to work there almost 10 years ago, and it is in my heart. It is a part of me. I have built bonds that will last a lifetime, and my kids and I have been blessed to be a part of such a great place. I am hoping that I will be able to keep there once I start working.
Update on the kids- They are all doing great! Owen is learning more and more by the day. He can write his name, knows all of his colors, shapes, ABC's, and can even say some things in Spanish! He amazes me. Lucy is a little spitfire. Her spirit is beautiful, and her temper is red hot! She took 5 steps last weekend, and hasn't taken one since! She is a bit of a scaredy cat. Cole has grown by leaps and bounds. It has been amazing to watch him progress. He is crawling, pulling himself up, and trying to walk now. It is an answer to my prayers for him. He seems to love his young toddler play group, and I enjoy the 45 mintues I get to spend with just him. I wish I had that opportunity with each of my kids. Owen is learning his firt bible verse for his little performance. He is so precious. He is learning Proverbs 3:5. Trust in the Lord with all your heart, and lean not on your own understanding. He melts my heart!
I would love to say that now that I have updated my blog, I will continue on updating and keeping up with it, but odds are good that the next update will be 2 months from now! Such is life :-)