Homeschooling Progress

Wow! I can't believe we have already been doing this homeschooling thing for almost a month now. I will say the first two weeks were rough, especially for my oldest child. She is so use to being in public school that she was having a hard time letting go of that way of thinking. She felt like she had to do tons of every subject, everyday, instead of spreading it out throughout the week. We had to change some of her supplementing curriculum already because she didn't care for it. We also had to work on time management as she wanted to wait until dinner time to do anything and then complain when she got into trouble for not getting it all done. Thankfully, I think we got those few bugs out.

Callie, on the other hand, is doing fantastic! She loves mommy being her teacher. She has already learned to recognize 1-10, say 1-10 in Spanish, recite her days of the week and the months of the year, she also can recognize letters A-C, and she knows how to write her name independently!  These are HUGE strives in such a little amount of time (2 days a wk for 3 wks). I can't wait to see what the next month has in store for us.

 Today, my husband and I took our girls to the MTSU Saddle up event.  Callie had so much fun getting to do all the hands on activities that they had. I hated that there wasn't anything for older kids to do. Poor Alissa was so bored:( I did get to see first hand how much Callie really can't sit still. I got to see how severe her ADHD really is. It goes beyond her being 4 years old. It goes beyond her being a kid. She couldn't wait in line even though others could. She couldn't sit still to get her face painted even though younger kids could. Her attention span is so short that she couldn't focus on one activity because something else would catch her eye. I really don't know what to do about it either. My husband has severe ADD and needs to be medicated, so I know it's in her blood. But,she is only a little girl. A very energized four year old little girl that already has so much going on in her life. Do I really want to push meds on her? She already eats a pretty healthy diet. She already doesn't eat things with red dyes, so I really don't know what else I can do "naturally" to help her. I guess I need to schedule an appointment with her pediatrician to discuss option with them, Thank god I am homeschooling her because I know she would not be able to learn a thing in the school system.

I think it's really funny that most blogger sites  tell you to pick one topic and blog about that. Why would anyone want to stick with just one topic when this thing called life gives us so much to talk about? I started this blog to give everyone a real world view of what it's like to raise a child with BOR syndrome. With this being such a rare syndrome, I think it's important for others to see they are not alone in their journey. However, even though my blog will focus on my children, one of which does have BOR syndrome, I can't blog daily about her without sharing other parts of our lives. So, I hope you will stick with me while I share it all with you!

Callie is truly my little monkey. She is always climbing on something! She told me the other day she wanted to climb on top of the house so she could see the whole world.  She is absolutely hilarious! I have no doubt, if she were allowed, she would climb right on to the top of our roof .

Homeschooling

I always knew I wanted to be a stay at home mom. I wanted the old fashion ,1960 version of a life that included a loving husband, that works everyday to support his family, 3 (yes I always wanted 3) kids that I adore that I get to stay home with daily, a nice home with a white picket fence, and 2 dogs in the yard. Never, not once, did that dream include homeschooling but here I am starting the process. My reason for wanting to home school is really a two fold reason.  I am a certified teacher, and I have worked in the school system for several years. I have seen the in and outs of our public school system, and honestly..... It Sucks! So, after two years of working in the system, I started looking for other options for Callie. I knew the school system would eat her vibrant soul alive. My fourth year in the school system, I decided I didn't want to be part of it anymore either. So, I knew I didn't want Callie in the school system, and now I knew I needed out too. Callie, without a doubt, has some form of adhd so sitting is almost impossible for her. In addition to that, she doesn't do well in environments she is not familiar with nor with people she doesn't know. All in all I knew in my heart that a classroom environment was  not for her and by homeschooling it allowed me to continue to do what I was trained to do, teach!  It really was a  win, win for everyone. After the decision was made that I would home school Callie, Alissa, my 13 yr old, decided she wanted to be home schooled too. I went from never thinking about homeschooling to homeschooling both of my girls in a blink of an eye. I can't even describe the range of emotions that I am having from being excited, scared, worried, but above all blessed.

 I hope to bring you guys along for the fun ride of homeschooling. So stay tuned for tons of blog updates:)

Where are we now?

I am so sorry that there has been such a long gap between my post. I guess I am a horrible blogger! Sorry guys.. So, what has been going on with me. I found a teaching job.. I lost my teaching job.. I got an EA position at a great school.. I quit my EA position to stay at home with my girls. Now, I am actually going to start homeschooling them both starting this fall. Callie, who is only 4, will be doing a simplified pre-k program, but Alissa will be doing an 8-9th grade curriculum following the Charlotte Mason philosophy (more about that later). So, what has been going on with Callie? She has passed all her hearing screenings up to date, and all her kidney function test have all came back great. So, my little fighter is doing amazing! Her speech on the other hand is delayed. I've know since she was 2 that her speech wasn't where is should be, but everyone insisted that she would catch up. Well, last March I finally went and got her tested, on my own, and sure enough they flagged her as being delayed. We need to go in for a more in -depth analysis, but we have to wait until school is back in session. The joys of doing it through the school system, it may be free but they are VERY slow. Callie goes back this month for another hearing screening. I hope all checks out, but lately she has been saying a lot of huh when we talk to her. It really worries me. I am hoping it is just selective 4 year old hearing and not some actual hearing loss. I will update you all once I know.

Breastfeeding my 2nd daughter

Breastfeeding is suppose to be this natural,easy thing if you listen to everyone else but as a breastfeeding mom, you know this isn't always the case, at least with my two girls it wasn't. My 1st daughter was born at 36 and 6 and even though healthy as can be would not suck to save her life. At the time, the nurses kept telling me that she would get hungry enough that she would suck hard enough to bring down my milk. She did have some latch issues too but mostly poor suck. Well, when Alissa was 4 days old we went back to the hospital, due to her eyes becoming yellow that morning, just to find out she was also dehydrated. Now, I was up all night the night before trying to get her to nurse and she wanted no part of it and would just go to sleep. Following what I was told I figured she would eat as soon as she was hungry. That day I started pumping and supplementing with formula. That lasted until she was a month old when I was producing not even half of her daily needs so I stopped. Flash forward to my youngest.
 Callie was born almost 9 years after her sister so I knew I had more patience and knowledge about breastfeeding that  I could, and would make it work. WRONG. Callie was born at 37 and 1 and minus the clefts on her neck (did not know about the missing kidney yet) healthy as can be but she would not latch. I tried, nurses tried, and even the lactation consultant tried. We could get her to latch using the SMS system but not alone. Have you ever tried the SMS system? It is hard to work alone! I tried at the hospital and spilled breast milk EVERYWHERE! I gave her a bink at 2 days old (in retrospect maybe I shouldn't had) but I wanted to make sure her suck was good since my oldest wasn't.She had a great suck so not the issue. We stayed in the hospital for three days working on her latching every 2-3 hrs and nothing. She would just not do it unless we here giving her breast milk via a tube at the same time (SMS). I decided that day to pump and not wait any longer. I pumped like crazy with a hospital grade pump every 2 hrs for the 1st 2 weeks. After that I bought my own pump and pumped every 3 until she was 6 weeks, At 6 weeks, I dropped the over night feedings because I was exhausted! So I still pumped every 3 hrs from 6 am to 9 pm, but I got the much needed rest from 9pm to 6am. I am proud to say that my daughter is now almost 9 months old and has only been on expressed breast milk. I plan on stopping at 11 months and hopefully have enough stored to take her to a year old. It has been hard, very hard but she is worth it.

Genetic Doctor

December the 10th, 2012 we set off to Vanderbilt at 8am to find out if Callie can be officially diagnosed with BOR syndrome. I will say in all the appointment we have had , they all we are in really fast. This appointment itself took forever but only because they took our whole family tree. They needed to know if anyone on either side had any characteristics of BOR syndrome or any other syndrome for that matter that would explain the birth defects that Callie was born with. Of course, we already knew that no one had anything even close to resemble what out poor daughter was born with. In fact, both sides of our families are really healthy in that aspect. Yes, we have some diabetics and even a few that have dies of cancer. but no birth defects. After taking a full medical history on Callie and taking our whole family tree, they concluded that if Callie did indeed have BOR she had a spontaneous case of it. My husband and I will still need to be tested just to see if we are carries but the doctor doesn't believe we are since there is no family history. Now lets talk about this test. Of course genetic testing is not always a sure thing. In the aspect of science, it is still a new thing but this test is only 40% accurate. So we are putting our hope and faith in a test that may not even tell us what we need to know.  If it comes back positive, she has it no doubt, but if it comes back negative, there is still a possibility she has BOR syndrome. Go figure! My husband actually debated not putting her through another blood stick, the baby has been stuck a lot in her short life, but we decided it was worth a shot to have some answers, hopefully.
 Now some other information about this condition is... reflux.. Why? They have no idea but a lot of children with BOR syndrome have  reflux. Something about how their necks are formed especially the children that have the clefts. So all along she has been treated for acid reflux and been on all these meds and it could be because of this syndrome. Granted the meds can and still do help but since that's not whats causing the problem it won't completely go away until we have the cleft fixed.

We are suppose to go back to Vanderbilt in three months to find out the results of genetic test. It is going to be a long three months for us but hopefully we will find out something. Don't worry I will update much sooner then that. Life it always interesting around here. Maybe I should write about how breastfeeding is not so easy lol.. just maybe?