Monday, July 29, 2013


Conner turned 6 last week. It is so hard to believe that a little more than 6 years has gone by since we moved to Michigan and our lives changed forever. There have been so many struggles and sadness in the last 6 years, but a ton of triumphs too.

A friend said to me recently that she didn't realize that Conner was born so early until she read something on Facebook. I thought in case anyone is just joining our story now, I would give a little bit of our story. I thought that I hadn't really thought about the details in a few years and so many things I can't even remember any more. While it's good that some of the memories are fading, it's also really good to remember the experiences that have made us the people and parents that we are.

So, here it goes. We were expecting twins, due November 2007. We were a little nervous but excited. We had been trying to have kids for a few years, been to lots of doctors and had lots of tests done. Early on in my pregnancy, I had some trouble (maybe at about 5-6 weeks) and I thought (and the doctor thought) I was having a miscarriage. David was out of town and I was hysterical. The next day, we found out we were having twins (we originally thought it was just one baby) and I had a clot in my uterus. The doctor said this wasn't that uncommon with twins and that I needed to take it easy for a few weeks. Things got back to normal and everything was going fine. I don't really remember being sick or feeling bad at all, not even tired. My doctor was great and everything was back on track.

We moved to Michigan on July 1, 2007. I had to find a new doctor and get situated here but we figured we had a few months to get acquainted with a new doctor and hospital. I had not been feeling well right before then (20 weeks) and mentioned to the doctor. She said it was normal to be having these feelings since I was pregnant with twins. She did not examine me at all, just checked heartbeats. She did not want to do an ultrasound but I asked for one. She agreed but made me wait until I could get in to the hospital (instead of in the office). I had to wait one week to have the ultrasound. When we got there, we had no idea what was about to happen. It was bad.

The ultrasound tech went to get a doctor and I immediately knew something was wrong. The doctor had no bedside manner and was very pessimistic. He said the boys would be born right away, they would not survive and that we should get a camera to take pictures because this would be our only opportunity. He said there was nothing that could be done. We didn't even have names picked out. I was taken to the OB triage area where I had a resident examine me and it was horrible. By the time I made it up to the Labor and Delivery area, I was already dilated more (I think it was 2-3 cm) and my water was broke (probably had been for over a week). My head was lowered below my feet and I stayed that way. Things calmed down and I was put on antibiotics. They told us stories of people who had stayed been in my same position and made it many more weeks. At this point, I was just 22 weeks along. They said if we could get to 22 weeks and 5 days, I could get the steroid shots for the lung development of the boys. We had a few scares before that, but we made it to the steroid shots and got both of them 24 hours apart.

After a week, I ended up with an infection and ended up having to have a c-section. I didn't feel very hopeful at the time. I felt very detached from the whole situation (like an out of body experience). The boys were born in the middle of the night on July 25. Braedon cried when he was born. Conner had to be resuscitated. Both boys had to be intubated immediately. I don't remember even seeing them. They were taken away immediately by a very wonderful nurse practitioner and doctor.

The whole experience is such a distant memory. Thinking about it now is strange. But I want to remember what I went through. I did feel very strong at the time. I don't really feel like that any more. Going through what we did was a life changing event. And it didn't end there. It continued for 4 months in the NICU. That is where we spent every day, all day. The nurses became friends. They were our only contact with the outside world. We didn't have many visitors, we just sat there and hoped for the best.

Conner weighed 1 lb, 5 oz and was 12 inches long. He had complications. He had an infection. He had a PDA (hole in the heart) that would not close on its own so he had to have surgery on his heart at 2 weeks old. He had a IVH (bleed in his brain) that would most definitely affect him for the rest of his life. He had crappy lungs. He never pooped on his own and the doctors thought he had NEC (a bad intestinal problem) so he had to have surgery on his intestines at just a few weeks old. He had ROP (retinopathy of prematurity - an eye disease) and had to have surgery twice. He was sick. He had a breathing tube in his airway for 5 or 6 weeks. He was teeny and needed steroids so he wasn't really growing. It was a really long few months for him. By the time he was ready to come home, he was 5 lbs, 5 oz. Still small, but mighty. He came home with oxygen and a monitor but he was tough.

Conner after he was born

Braedon weighed 1 lb, 3 oz and was also 12 inches long. He had complications, but different from Conner's and different from what I expected. He had a cleft palate like me except mine is of the soft palate. He had a PDA but was too ill to do the surgery. His lungs were so so bad that he ended up on the oscillator (a different kind of ventilator). The doctors didn't think he would survive that but he did. He ended up with NEC but was too sick to do surgery and then had a pulmonary hemorrhage where blood was getting in to his lungs. It was torture. His eyes were still fused shut until the day before he passed away when he was 2 weeks old. We got to hold him for the first time as he passed away. He was a sweet little boy with light brown/blond hair and blue eyes. He was tough too, but the odds were so stacked against him. Some have said that it is easier to lose a baby when they are so small, before you know their personality. I disagree. I wish I knew what his personality was like. I wish Conner had a chance to be with his brother for at least a moment. I wish that we would have a chance to see them together. I know Conner's life would be so different if he had his brother with him. I wish that I had the chance to know him before we lost him. Losing a child is losing a child no matter how old they are. It is hard. It affects your whole life and you never forget and you never get over it.

Braedon at about 1 week old
So that is the story in a nutshell. It's an experience that seems surreal, like there is no way that happened to us. Conner was given a very different prognosis than what is reality. We didn't know if Conner would ever walk or talk or play or go to school. We worried about everything for the first few years of his life because we had to. At six years old, things have not been easy, but Conner is amazing and still tough and mighty. We want him to have an easy life free from struggles and pain. He has had enough of that already. We want him to have happiness, same as any other parent.

Monday, July 22, 2013

Summer Stress - July 22, 2013

This summer has been really hard. Probably the hardest since Conner was born just about 6 years ago (in 3 days, yikes!). That was a hard summer. Really hard. This summer is challenging in a different way.

After a very successful school year, we have had a really bad summer. I made a mistake. David too, but mostly, it's my fault. I thought since school went so well that we could be a little adventurous this summer with C. So far, it has not at all gone as planned. He didn't really have many friends to go to camp with so we just signed him up for stuff that we thought he would like. I had high hopes for nature camp, cooking camp and safety town. So far, none of it has lived up to expectations for several reasons. Maybe my expectations are too high for camp, but it's not even that mostly they weren't that great. It has to do with how C has managed at camp and how he has been treated. It has all been so much stress for us that the confidence we were feeling about him starting kindergarten is gone.

Nature camp was fine. Conner was a bit young (4-5 years younger than all the kids). He did fine but he didn't get it. The afternoon portion of the day was a bit overwhelming but he had fun. I didn't feel like it was the safest or best place for him but it was just 3 days, so in hindsight, it was actually not that bad.

Nothing could have prepared me for the 2nd camp, cooking camp. Conner had been looking forward to it for months and couldn't wait to see what they would be doing. Well let's just say that there was no "cooking" involved in the 2 days he was there (it was 4 days total). Conner came home after the first day and said camp was boring and asked when they would cook. I was confused. The 2nd day, the teacher pulled me aside after camp to tell me Conner was inappropriate because he came out of the bathroom in his underwear to ask for help with his swimsuit (I told her he would need help). She said he was not embarrassed and there was something wrong with that. She really stressed to me that his reaction to having no clothes on was not appropriate. It was a very uncomfortable conversation followed by a talk with the director who told David that he didn't follow instructions (to get in his swimsuit) and should have asked another child for help. I specifically tell him every morning before camp to ask an adult if he needs help. This camp was clearly not suited for Conner. And he really did not want to go back (the 2nd day, the "cooking" project was actually decorating gingerbread cookies). So we got a refund for the rest of the week and the following week that he was supposed to do there.

The 3rd camp was Safety Town. "Safety" town. Conner was SO excited about going to the fire department. Honestly, the camp was fine but the fact that there were 30 kids and the "teacher" just graduated college was a little stressful. There was no swimsuit/dressing involved so he survived that part. But then the bullying started. I actually don't know when it started but I know that it happened and it broke my heart. It has continued to break my heart since it happened over a week ago. And scares the hell out of me for when school starts. Little kid bullies. I just didn't think it was possible. I have cried more in the last few weeks than I have in 6 years. I'm a mess. If my kid was the bully, I would be horrified. These parents didn't really seem to be that upset. My kid would have been removed from the playground if he was bullying someone and I knew about it. Not these kids. Horrible. At 5, Conner has already experienced more than the majority of adults. He has to work so hard to do every little thing. He is sweet and kind and loves people. Why would anyone want to hurt him (or any child, for that matter)? Heartbreaking.

So last week, Conner stayed home with me. We had fun. My stress level was way down. We saw a movie, went to an Art Fair, had fun hanging out together. Then this morning, I dropped him off again and the stress returned immediately. He is supposed to be at this camp for 4 weeks. I have heard great things about this camp. I let them know that Conner stutters severely and that he needs  help with his swimsuit and shoes. They said okay. Let's hope they mean it. He doesn't know anyone there. I gave him all the information I could this morning (ask an adult for help, use your "strategies" for speech, listen to the grown ups, go to the bathroom before swimming, etc.) and now I am just waiting for the day to be over. I'm hoping if it goes well, I will be able to relax a little. But after safety town, I think I will just worry.

Brennan is doing great and LOVES camp so at least I know that one child is safe and happy. I wish I could feel that way about both of them. I think we might skip camp next year. I would love to live somewhere with all year school. Then I wouldn't have to worry about all this.

School is looming over my head. I feel pretty good about Conner's ability to succeed but I'm so worried about the other kids. I didn't think I would have this worry so soon but unfortunately, I have seen that I was wrong.

Sunday, July 21, 2013

EEG and other tests

A lot has been going on with Conner these last few months. Backing up about a year and a half, Conner nearly passed out at school. We took him to the doctor and they checked him for everything. They said to take him immediately to the emergency room. Well, it did happen again about 6 months or longer later. By that time, we had talked to several doctors about it and were not as concerned. It seemed to be related to going to the bathroom. But at a routine visit, the GI doctor referred us back to our old cardiologist just to be sure. So we went to see the cardiologist in March. C's little heart is perfectly healthy. Good news. But to be sure, she referred us to a neurologist.

In April, we saw a new neurologist. We hadn't seen one in a few years. This one was nice. She observed Conner's behavior and asked him a few questions. She observed behavior indicative of ADHD which we agree with. We had put it off a while, but decided that we might try something for it. Because of his history and the recent "fainting", she wanted us to do an EEG first. So in May (it takes a month to get in to everything), we had the first hour long EEG. C did really well for it. He had to lay still for 90 minutes which was a little challenging but he did well with a movie on. Then we went back for our results and found out that it was abnormal. Not great news. So, the doctor had us go for an MRI (last one was at age 2 when he was diagnosed with CP) and a 24 EEG in the hospital. That happened in May as well. The MRI was challenging mostly because he had to be sedated and because of his crappy lungs and asthma, it just gets a little complicated. He had to have lots of  breathing treatments that day and ended up with a fever from the contrast. He woke up very crabby. Other than that, he did well for the test and thankfully there were really no changes since his last MRI. Although it is very abnormal, it is not getting worse or changing. So I guess that's good. The next week, we went for the 24 hour EEG. Conner did better than I ever expected. He was thrilled to have a "movie day" at the hospital and was curious about all the doctors and nurses. The only bad part was when they put on all the electrodes, but once he was all wrapped up, he did great. The hospital was great and we had excellent nurses. The results were the same as the one hour test. Abnormal. We don't really have a specific diagnosis. Just a seizure disorder with no outward symptoms of seizure. So no real diagnosis. No real treatment. And really now we are very hesitant to treat the ADHD because those drugs can make it more likely to have a seizure. Not the results we were hoping for. Since school ended, Conner has been on a seizure medication to try to quiet the area of his brain that is affected. We haven't noticed any positive changes and we are getting discouraged. It really sucks.

The part of his brain that is most affected from his prematurity is affecting his motor, speech, and impulse control. And now it's causing this seizure activity.  Sounds about right. And we really don't know what to do from here.


Conner's IEP was in May and I'm just getting around to writing this. Anyway, it went well. I think most of the things I wanted were added and I learned a lot through the process. We were very lucky that the principal of Conner's new school was able to attend along with the speech therapist he will have in Kindergarten. Also, Conner's amazing teacher was there and his current school speech therapist that has known him for 3 years. I truly felt like they were all on his side and wanted the absolute best for him. There was a lot of talk (and not even from me!) about what an amazing and wonderful child Conner is and about how far he has come.

(at kindergarten round up)

Conner was tested for academic readiness and was tested by an OT.  He was not tested for speech or PT. The speech therapist knows him well enough so it wasn't really necessary. I can't really give a good explanation for why they would not test him for PT. The reason I was given was that Conner navigates the school and playground without assistance and therefore does not need PT. I disagree. But the new speech therapist disagreed as well so has requested an adaptive PE evaluation when school starts. We will go from there.

I was surprised to hear that academically, Conner does not qualify for the Resource Room. They did give him time each week in Resource Room though to help with organization and classroom adjustment. Maybe he won't need it all year, but I'm glad he is getting it. There are so many kids in each class, I worry about him getting lost in the crowd. He will also be getting OT each week and Speech twice a week. I was hoping they would work with Conner on his shoes, snowpants, zipping, etc. but they will not work on these self help skills. So they are just going to just have to help him until he can do it himself. These tasks are extremely difficult for him regardless of how much we work on them. In OT, they will hopefully be working on handwriting and visual tracking type activities (mazes, puzzles, etc.). And in speech, they will continue to try to work on strategies for stuttering among other things.

It was already so long ago that I can't even remember the details but it went well. I was happy with the discussion and mostly happy with the services he is receiving. In the fall, we are requesting a technology evaluation as well as adaptive PE and will adjust things from there. His new school is getting 2 new kindergarten teachers so I am just hoping they are good and that he gets a good one.