Ups & Downs

Today has been very long, and full of many challenges and disappointments....

This morning Colton & I left extra early to get him to OHSU to see a new specialist. I did fine with the driving until I got to where we were supposed to exit - and missed it completely. Anyone who knows me knows how much I extremely dislike driving in portland. I got very flustered and ended up driving over the river and over to OMSI so I could try to get myself turned around. A phone call to preston to ask for help didnt result in the needed assistance. I finally found my way through berzerk AM work traffic to get back on the freeway - just to see a small sign a few seconds too late and missed the needed exit again. By then I was about in tears and trying to fight all the traffic we left early enough to miss. I ended up driving quite aways again before I could get where I could turn around again and find the right exit.

We finally got there and met with the new specialist. He was really good with Colton, and very patient. Our appt ended up being 4 hours long w/ short breaks throughout the appt. At the beginning I was given some detailed questionaires to fill out about colton and current concerns. By the 2nd break, the dr. brought me back into the room (vs being on the other side of an observation window) to help colton finish the testing. In the process of me coming back in, I also got handed more paperwork and surveys to fill out about colton. The more I looked through them, the more I saw the direction the dr was taking - and it was not a good sign. Although Colton was very compliant and calmer today, he never sat still through the entire morning and had to take several breaks, and have me in the room to help complete the testing. I kept telling the dr how thrilled I was that colton had done so amazinly well - this seemed to concern him alot.
By the time we were done and he had totalled our numbers, we took about 1/2 hour to talk about the initial results. The diagnosis was more than I was prepared for - behavioral, and cognitive concerns were at the top of the list. The front brain development is way behind - he scored almost as low as he possibly could have in the cognitive and developmental testing. While his academic skills seem to be in the target of K-1, his abilities to complete the needed tasks are way below normal ranges. The dr mentioned something called sluggish cognitive something disorder. Meaning that while other parts of the brain are working sufficiently, and the potential is there, the brain is not developing normally to meet the needs for reasonable/rational thought process to work. Behavioral and emotional concerns are because of the brain development being so delayed, combine with this with a pretty definate diagnosis of ADHD. These are also more prevelant because of the genetic syndrome that Colton has. His specific genetic disorder makes him 10% more likely to suffer ADHD and the concerns he is experiencing may be more difficult to manage than for kids who only have 1 of these concerns w/out genetic stuff going on.
He told me that he would not put a conclusive diagnosis because it is supposed to be confirmed by 2 different testing resources - but because I am his home and school environment and therapy and primary are so insignificant in the time he spends there, he could not technically make the call. Everything in the testing today, and all the info I filled out pointed conclusively enough though. I felt the specialist was really great, all except one point in our discussion. He had me fill out LOTS of paperwork and questions today - the one specifically told me he was heading towards ADHD. In our discussion of numbers and totals he told me that he had to dismiss/throw out that entire test because the total was so extreme - which points to me being excessively negative towards colton and his actual behavior/emotion/capabilities. I was floored - he said that the numbers were excessive - and I told him that they were truthful. Everything on that set of ???? were exactly all of the things I have been going through with colton - I was blown away that the dr would ask for my input and then dismiss it and point a finger at me that I am too negative towards colton. I felt like after all we had been through this morning that I was still not believed and that I was being accused of exaggerating colton's situation. It was all I could do to remain calm and not let emotions get the better of me.
I am going to for sure make a phone call to our pediatrician tomorrow to just give him the "heads up" about the appt today and the concluding discussion. He will prob get all the reports and recommendations way before we will. I know that I can trust his thoughts, suggestions, and opinions. We will have alot to discuss as the specialist today said that we are looking at life time concerns, even with all the measures we can take now. We will be discussing more intensive speech therapy, OT, possibly behavioral therapy and most likely medications. I know our pediatrician will be completely honest with us in helping us make the decisions that will best help colton now and in the future.

Part of our adventures to OHSU usually include a stop to McD's - esp after missing bfast and lunch to be gone so early and so long. Colton decided an inside, sit down was his choice today. He was thrilled with a Happy Meal and fresh baked choc chip cookies, and I was able to find 2 things I could tweak for me to enjoy too. I spent lots of time praising him for how well he had done today. It really was miraculous that we made it through the appt with relative calm and cooperation. We enjoyed our lunch together.

After arriving home, everyone was down for naps - the long driving is always exhausting for me, and I knew I was struggling to stay awake on the way home. We stopped for short naps too before I was on the run again.

I gave blood again today. Barely scratched by with 2 points in my favor for the iron test - even after all the hard work I have done the last several weeks to be sure I had enough iron and fluids. I chatted with the gals there and warned them of my concerns. I was surprised when the one gal wanted to go for my left vs right arm. She got it on a first try and I was done in less than 10 minutes. My constant plea to Heavenly Father is that if someone needs my blood more than I do, then He would need to help me stay. Apparently that was true again tonight. I am thankful that he knows the needs of people I will never know or see, and that he had wonderful, skilled staff to be there to help me too.

On my way home I received a tear filled phone call from Ceana who was requesting permission to put children in meltdown to bed. She was in meltdown herself - 5 out of 6 out for the count tonight. I hurried home and tried to help get everyone settled and sent the girls on bike rides to burn off the steam. Since everyone had naps today, though, settling down was a long time in coming with all the little people completely separated from each other. They have all crashed in different rooms, and I am just too worn out to move them.

Preston has been working berzerk hours - 18hrs plus most days - have no idea what time he finally got home last night (this morning) We have seen him for one afternoon in about the last 3 weeks. We completely missed our anniversary and had planned to take tomorrow together to try to spend a special day together before he leaves for TX. Just found out he will be working extra late, and then going into work tomorrow AM as well. Most the of the rest of the day will be spent running errands and packing to get things done that havent been because he has been gone. I am trying to do my best to not cry and not be disappointed, but I am, and the tears are coming anyway. I was really hoping to have just one day for us to spend together with us/play time. Errands and work and packing are not the way I was wanting to spend that time. We will be together, but it is hard for me to not feel sad at losing quality time together - esp knowing Sat will be spent at drill, he will be leaving again Sunday, and that when he is back it will mean more extra long hours to make up for him being gone....
I am so sad tonight I have just completely even stopped getting ready to go. Will just try to get some sleep and take care of things in the AM while Preston is at work....

I know that I am extra tired tonight - it has been a very long day filled with more than my heart or brain can handle. There are many things that will need to be considered and new goals to set for colton. There will also be more having to fight the school district to keep his IEP and add new concerns. I am not hopeful we will accomplish what is needed, and even if we convince them to keep his IEP in place, we will most likely end up seeking out new specialists in Portland or other areas to meet all the new needs Colton will have. I feel like I have been given a new set of concerns, but not the help or support or confidence that I will be able to handle them. I feel like I have been accused of being too negative, too emotional, too unstable myself to help Colton. That it is my fault and that if I dont get my act together that he will be the one to suffer more.
I am also struggling with having any objective thoughts on family, personal time with Preston. He works so hard to care for us, to meet our needs, and we are truly grateful that he still has a stable job when so many dont. It seems we should be able to find a happy medium to be able to have enough hours to meet family needs, and be able to have quality time together. Our summer has completely slipped away without any of the family time or activities or projects we were hoping to see happen. Once school starts, that time will be even harder to find to spend together....

One last sad note for this day. I heard back from the computer guy about my hard drive. It is still going to be a long, drawn out process for me to continue to sort the dead from the alive files. Though most of the images are recovered, there is much that is still lost and will have to be moved and re-organized a piece at a time. I will need to spend that time and then delete as much as possible from the "dead" to make room to re-install all of the needed programs and software to get back to photography work. It is looking like the loss of all of my documents and projects - both for PMR and family are a total loss. It is family history, financial and other PMR records, and all of the kids school projects they worked so hard on last year. All gone. This has been a very hard, discouraging learning experience for me. We will do better for the future, hopefully, and just try our best to re-build and research to replace as much as possible. It is sad to know so much is truly gone - documents and records that were so important, that I thought were safe on that extra drive. Nothing to be done but try to move on and do things differently from now on...

Guess that is all for today. Really has been a hard day. Looking forward to hopefully getting some sleep tonight...will just have to try to start over tomorrow....and hope the rest of the weekend will be filled with more ups than downs...wish me luck...