January 8, 2016 - New Year

So here I am in 2016. I am feeling down in the dumps. I don't know why. I feel like I need a purpose. My days usually start at 2:30 when I pick B up from school, then C up from school and head to after school appointments and activities. I had hoped that at almost 9 years old, Conner wouldn't have so many appointments and we would have more time to do fun things or more interest in after school activities that didn't involve therapy or TV. But we aren't there yet so here we are. 

I look at Facebook every day. Maybe I shouldn't. I know half of it isn't real life or things that concern me. But I see all these people relaying all the wonderful things that are happening in their lives, all the great things that happened in 2015, everyone's vacations, wonderful jobs, promotions, purchases, all of their children's accomplishments (like EVERY SINGLE accomplishment, large or small). I shouldn't fault anyone, I mean, who doesn't like to brag about their kid. But it just has a way of beating me down. 

We did have some wonderful things happen this year but I felt like everything else overshadowed the few great things. But as I reflected on the year, I came up with a few things that made 2015 special. I went on my 2nd weekend with a group of extraordinary women with an amazing speaker whose words have resonated with me all year. I finally went to work at a camp as a camp nurse. After thinking about it for 8 years, I finally did it. I was so nervous but I just kept thinking about what I learned at the moms' weekend "If you think good, it will be good". And it was so much better than good. It was amazing. I had the best time at work. I had some great co-workers and I met some amazing kids. I loved everything about it. I, of course, regret not doing it sooner, but I'm so glad I finally did it. It's only a few weeks during the summer and when it was over, it was hard to get back in to life and the boredom that I feel when I am in our daily routine. We took a nice family trip to Florida and visited Disney World. The kids loved it and it was fun. The biggest problem for Conner was the walking but we made it through and we hope to do it again soon (as soon as we can earn enough Disney points!).  We participated in our 5th Dance Marathon at the University of Michigan and our 4th or 5th Walk 4 Friendship (can't remember). 

School was a humongous waste of time last year for Conner. His teacher did not get him at all and spent no time trying to figure him out. He continued to go to the Resource Room and thankfully his teacher there is still amazing but the majority of the day was a big waste. Thankfully, this year, his teacher has been great and we are seeing small progress every day. Conner's biggest issues are that he struggles with independence (getting ready, being responsible for his stuff, working on his own without someone sitting right near him), confidence (believing that he can actually do more if he tries) and just his overall dislike of doing work at all. He is behind in almost all areas. It's frustrating to work with him because he just doesn't try or just can't focus. But thankfully, we are moving in the right direction and I guess that's all we can hope for at this point.

Brennan has had 2 amazing years in her preschool. Her teachers are beyond excellent. She has made some really sweet little friends and loves going. I hope her love for school continues. She goes to school 4 days a week and I get one whole day to do fun stuff with her. She has been doing gymnastics this year and really is loving it. She is an anxious and shy kid and I'm hoping she will grow out of some of that in the next few years. We have such a great time together and I am going to miss our date day next year when she is in school every day. It's so hard for me to believe that she is almost 5. I'm struggling with that. I feel like I didn't have enough time to enjoy her little. Ugh. 

David continues to work really hard and does everything for the kids. He is seriously the greatest dad and I hope the kids realize how lucky they are. 

I worked very part-time at a swim school for about 18 months but couldn't make it work. The day I decided to leave was the day of Brennan's school pictures when I didn't have anything special for her to wear. I realized that I just didn't have it together. I really used to have it together, I was organized. I'm not really sure what has happened but anyway, I gave up that job shortly after school started this year. I also worked for a great company this year called Better Life Bags. If anyone is reading this, you should really check it out. I had the opportunity to work at local/regional art shows and spread the message of Better Life Bags. It was a ton of work but fun and a great way to get out a little. That is done as of the end of 2015 also. So here I am trying to figure out what I want to do when I grown up. 

December 18, 2015 Starting Again and Catching Up

There are so many things I always want to say to the world...to noone in particular, just need to get out what I'm thinking and this has always been the best way for me. So, maybe I'll start again. Maybe I'll make one or two posts and feel better and won't need it any more. Or maybe I'll make one or two posts and just realize the million other things I have to be doing and give it up. I used to be really good at follow through, keeping up with things, those days are gone.

I realized that my last post was when B turned 3. In a few short months she will be 5 so I owe a post to her. And I had a draft of a post from when January that I never finished so I just posted that too so I won't forget all these important things when I look back upon my life and wonder where the time went. It's incomplete. But it's there. The past few years have been hard. Maybe I didn't blog about them because I really didn't want to remember the details. But I remember the details, maybe not the specific week we tried a different medication or the week we went to a particular doctor, but I remember the details.

So here we go again, chronicling our life. Maybe I'll add a little more about life and not always write about the kids. Or maybe that is life so I won't have too much more to say. I don't expect anyone to read but maybe it will feel good to let it all out.

2014 - The Hardest Year Yet

2014 was a hard year for me. I spent New Year's reflecting on this year and thought a lot about how different and hard this year has been. Let me start by saying that we are lucky that everyone is fairly healthy and I am grateful for that. When Conner was a baby and in the NICU for 4 months, came home on Oxygen, had to go to therapy to learn to roll, sit, crawl, walk, talk and eat, I thought I could handle anything. 

Conner's early years were hard for many reasons. He was clearly behind his peers physically and socially and his health was not the best (not terrible, just not the best). At some points, we spent 5 days a week in therapy of some kind and doctors appointments each week. At one point we were told Conner would most likely never walk. Conner didn't talk until he was 3 AT ALL and we were actually told by a doctor that if he didn't talk by age 5, he probably wouldn't talk ever. There were stressful days, doctors with no compassion, people who said uneducated things. But Conner was such a good baby, a good toddler. He smiled during therapy and for all those appointments. He did all the hard work that was asked of him at such a young age. Doctors said that his attitude was one reason why he was doing so well. He was happy and he was making progress every day so we were positive and had hope for the future. I felt confident that things would just get easier over time. And they did for a few years. 

When I reflect on years passed and even on the past year, I see the smiling pictures and remember some really great times but at the same time, I know that I didn't take pictures during the really bad times and there have been significantly less pictures this year. It's hard to pinpoint the moment things with Conner changed. When he was 5, there were times after school when I noticed anger and a meanness that had not been present before. I talked about it with Conner's teacher at the time and she attributed it to his being tired after a long day of school. Lots of kids are mean and grouchy after long days of school. We were glad that he was learning and that he had friends and his behavior at school was good. Last year, Conner was in Kindergarten and it was a little more of the same. While the behavior issues seemed to creep in a little more frequently, it only happened once or twice during the day at school and primarily was just happening at home. Again the teacher and all the support staff felt like Conner was keeping it together at school and just needed to let it out at home. School, with 25+ other kids in his class was all a little bit overwhelming for his system. On top of all the regular schoolwork and learning, Conner was also going to Occupational Therapy and Speech at school in addition to private OT, PT and speech. Of course, he was tired and we were asking a lot of him. So, we just dealt with things how they were but it really wasn't majorly affecting our life.

At some point during all of this, we started treating Conner for ADHD. It was pretty much impossible for him to be in a school environment without trying something. So the medication trial and errors began...and it was REALLY bad at times. We finally found something that seemed to work but the effects were short lived. After a month or two, we needed to increase and finally after about a year, we had to increase again and really we question whether some of Conner's behaviors now can be attributed to this medication. This year, we have been to more doctors' appointments than I think we have been to in the last several years combined. 

     

B turns 3!!

Our little B turned 3. It's so hard to believe that she is already three years old. I always remind myself to try to treasure every moment because it goes by so fast but then I don't really do it. It flies by. I feel like she was just a baby, learning to roll over and in a blink of any eye she has become a sassy 3 year old.

My 3 year old:
Favorite food: Sushi (chicken roll and edamame) and hot dogs. Brennan is a picky eater. She is hesitant to try new foods and judges everything by what it looks like...if it's not pretty she won't eat it! She likes carrots and cucumbers and most fruit so she eats that several times a day. This area is definitely a work in progress.

Favorite toy: She loves her dolls, princesses, and crafty stuff (coloring, play doh, stickers, stamps) but she absolutely loves playing with the Magna Tiles with her big brother.

Best buddy: "Conn" (short for Conner!), Cassidy, Lexi and Kendall. She loves playing with her friends at school, ballet and her other class.

When she grows up: She still wants to be a princess and she told me that I am the queen. She loves playing Doc McStuffins so maybe she will be a nurse like me or even a doctor some day! Or, maybe she will actually be a princess!

Favorite Disney Character: Sleeping Beauty (because she is the pink one...never seen the movie!), Doc McStuffins

Other favorite characters: Strawberry Shortcake and friends, Pinkalicious

Favorite color: PINK, and purple and blue and rainbow (the blue and rainbow are because that is what Conner always says and she wants to be just like her big brother!)

Favorite TV shows: Mickey Mouse Clubhouse and more recently, Dora and Bubble Guppies

Favorite Songs: Do You Want to Build a Snowman? (from Frozen), Girl on Fire, Anything sung by Minnie Mouse!

We are going to the pediatrician in a few weeks so I will get B's current weight and height. I know she is over 30 lbs but not sure exactly.

 celebrating her birthday at school

so proud to be holding the kiddish cup!

Our girl can be so sweet and snuggly, but she is also SO sassy. She has some killer temper tantrums about little stuff and I'm hoping we will get through this phase quickly. It is no fun. She talks and talks and has says really funny things. We love hearing her little voice. She goes back and forth throughout the day on which parent she wants to be with. Sometimes all she wants is me and sometimes all she wants is her dad. At bedtime, she uses it as a game to stay up longer. B gave up her naps a few months ago. She still is tired in the day, but when she naps, she can't sleep at night. Sometimes she will take a quick nap in the car, but mostly she is done. I miss the time in the afternoon when I could get some stuff done, but B has become a good date in the afternoons. We have a lot more time to be together and she is a GREAT helper. She loves to help grocery shop and put stuff away, she cleans up her toys (sometimes) and likes to help with laundry and cook. She makes us crazy a few times a day, but makes us smile about 100 times more! She loves to do everything "all by myself" and has figured out how to do so many things on her own through her stubbornness.

Brennan hates loud noises and is scared of new situations and people. She can be very shy, although she has gotten a little better recently. She takes a little less time to warm up than she used to. She is terrified of anything that might have a fire...like restaurants where there is a fireplace or a flame of any kind. She covers her ears when something is too loud and is especially afraid of toilets flushing. Not sure if this has anything to do with her complete resistance to going to the potty but it is so frustrating. She is dry when she wakes up in the morning but refuses to go in the potty. I'm trying not to push it because I want her to be ready but we are definitely tired of diapers and I know that physically she is ready.

School is going well and she has made some nice friends. She has learned her colors and is learning letters this year. We are looking forward to seeing how she progresses in the next year. She is still taking a dance class one day a week and another class on Thursdays. She loves both so we will probably keep those up. She wants to learn gymnastics and loves swimming so maybe over the summer we will try some of those things out.

We celebrated B's birthday all weekend and she felt very special and was very grateful to all the people who helped her celebrate and gave her such wonderful gifts.

B is a beautiful child that brings so much to our lives. She is a great addition to our family and a great best friend for her brother. They love each other so much. Although she has reached a challenging age, she is fun and wonderful and we love her so much. Happy 3rd Birthday little B!!

ADHD and Kindergarten

Conner has been in school for a few months now. We are still getting in to the routine of things and Conner is still so tired when the day is done. His schedule is so busy at the beginning of the week that it is a relief when Thursday rolls around and we are finally winding down a little.

Let me first say that Conner's school has been AMAZING so far. They have done so much more for him than I ever imagined. The staff is great and loves him and takes care of him. It's not perfect and some days are better than others but for now, he is in a good place. His teacher is absolutely the best. I don't really know the other two teachers, but I feel like Mrs. D is just a wonderful person, teacher and the best possible teacher for Conner to have. That has made this transition to elementary school so much easier.

Conner now gets OT and Speech at school 2 times a week each. He started getting Adaptive P.E. and loves going to that once a week. He goes with 2 older kids and he loves the extra attention and physical activity indoors (he doesn't love being cold on the playground and it's during recess). He is also going to the Resource Room when necessary. We think he is getting Social Work services to help him deal with the situation that arises when other kids can't understand him. He gets very upset when you can't understand what he is saying and he needs some tools to deal with that. So, he is very well taken care of. There is a special education paraprofessional that visits his room during the day and will sit with him when she can to help him one on one. She is shared between all the kindergarten rooms, so I'm not sure how much he works with her. The staff is wonderful and we have been so pleased.

The biggest issue for Conner is that there are 25 (used to be 26 and I'm assuming they will go back to 26 by January) kids in his class and one teacher. He has significant ADHD and it has been very hard for him to stay focused at school. I'm not sure there is a solution to this problem. If you combine this problem with cerebral palsy and Conner's difficulty with using his hands (writing/cutting/etc.), it makes things a little more challenging. He also does not seem to be connecting with the kids in his class. He is so friendly and social but the kids don't seem that receptive to him. All I want for him is to make friends and to be happy. The staff love him. I wish the other kids would give him a chance.

We visited a new neurologist in September after having a terrible experience with our old neurologist. We tried to get Conner in to a U of M neurologist and he still does have an appointment scheduled for June 2014 (I made the appointment in July 2013) but we are thrilled with the doctor that we found. The first order of business for him was weaning Conner off the seizure medication he was on all summer. The doctor said that there are 2 reasons he should not be on this particular medicine. First, he has never had a visible seizure so we should not be treating an EEG. The medicine he was on was doing nothing for him. The second reason to take him off, was that this particular seizure medicine exacerbates ADHD symptoms. So the whole reason we were at a neurologist in the first place was for ADHD and the doctor gave us a medicine that makes it worse. I feel horrible that we even started the medicine in the first place. It took a month to wean him off. We noticed a difference as we lowered the dose.

We also have tried three medications for ADHD. I was so resistant to trying anything but it became very apparent once school started that it was very necessary. The neurologist wasn't sure anything would work and his hope is that Conner will eventually outgrow some of his impulsivity but he felt like we had to try in order for Conner to be successful in school. The first two medications we tried, both stimulants, were a disaster. The first caused rage (and Conner gave himself a black eye the one day we gave it to him) and the second medicine caused crying, mood swings and uncontrolled tongue movements. I was feeling very disappointed and was losing hope. I emailed our new neurologist, who is so fantastic and emails me back so quickly, and he said we should try a non-stimulant. I was hesitant. We started the third medicine on a Friday. The doctor said it could take a week or more to notice anything. We dealt with some side effects - sleepiness and diarrhea, but I felt like it was working and we stuck it out to see if those symptoms would get better and they did. We are noticing HUGE differences at school and at therapy. His teachers and therapists are also noticing a difference in his stuttering, which although it is still severe, he is having less tension in his neck when he speaks.  For once, we feel hopeful. We feel like Conner has a chance at school to learn and succeed. These issues we deal with are so stressful and to have something help is such a relief. We are hoping it stays this way.

These things may not seem like a big deal. But as parents, we are so tired. We are so tired of all these things that Conner has to continue to go through on a daily basis. School and learning and making friends is a big deal to a Kindergartener and we pray every day that he is happy and enjoying his life.

We are all looking forward to the holiday break so we can spend some time together. We really miss Conner when he is gone all day and look forward to our Starbucks dates, movies and time to play together.

 Running with a teacher (another K teacher, not his!)

 Running with his awesome principal!

Forest Fun Run 2013

Brennan update

B started preschool in September again. She is doing the 2 year old class again (she doesn't turn 3 until March so this was the most appropriate place for her). There are 11 kids and 3 teachers in her class. She is one of the oldest kids in the class. She is enjoying it and is learning a lot. She is talking a ton these days and all those initial worries about her speech are pretty much gone. She has a few weird speech things but Conner's speech therapist wasn't worried when we talked about it. Anyway, she loves going to school. I think her favorite part of the day is Arts and Crafts. She is very crafty, especially compared to Conner. She also likes music, stories, cooking, etc. She has made some friends and she is well behaved at school. Going to school is great for her and we love hearing everything she has to tell us at the end of the day.

school picture - 2's

Brennan also takes a dance class and to say she loves it is an understatement. There are 5 little girls in her class and her teacher is fantastic. Brennan talks about her teacher all week and practices her moves. I loves watching her in her little tutu!

Princess day (Halloween) at dance

She also takes a class at the gym and is loving that too. She has changed so much in a year. Last year, she was so shy she wouldn't go near anyone and now she goes willingly to all of these activities. It helps that she knows her teachers and is very familiar with everything but she is getting so grown up!). Her class at the gym is a little playtime and a little bit of preschool type activities (songs, books, bubbles, art, play). She loves it.

A few weeks ago, she started swimming lessons as well. She loves this too. She has gone 3 or 4 times and has already started putting her head in and doing big scoops, pushing off the wall and jumping off the side of the pool.

At home, B is a little drama queen. This morning, she HAD to wear tights. She HAD to have her hair in braids (which I am not that good at doing!). She is particular about what she wears, likes to wear dresses, only will wear her pink tutu to dance, likes her hair a certain way, likes to wear a bandaid and stickers to bed. She is tiring! But also so sweet.

She is a picky eater and a little difficult at night to get to sleep. Her favorite foods are Chobani yogurt (every day), Kraft Mac and Cheese, plain noodles, and hot dogs. Gross. She will eat broccoli and almost all fruits and if we go to sushi, she likes edamame, California rolls and Miso soup. We just wish she would try a few more foods. We have tried a little to give up nap time because she has been having trouble falling asleep at night. But she is so tired in the day that she is still sleeping for about 1-2 hours. If her bedtime gets much later, we will have to try again to give up her nap.

Brennan, overall, is doing so great and we love her so much. She is such a great buddy to Conner and even though they sometimes don't share and they get a little crazy, I'm so glad they have each other.