OT and PT Evaluations Today

Our day went from a ski trip to turning around 3 miles from the house because we realized it would be a crowded ski day since it's a holiday, Garrett and I are snotty, and we had a tractor and Addie and Ainslee's two 4H heifers being delivered. Once back home, I got the girls' homeschool lesson going and started scheduling our new appointments including OT, PT and speech evaluations as well as his neurophycology appointments. When I called the therapy office, the receptionist said I could come in about an hour for both physical and occupational therapy evaluations..SWEEEEET!!! I LOVE IT when things get rolling that quickly!!! Our insurance has been wonderful granting us many visits and evaluations for PT and OT very quickly.

The PT was a very, very kind lady who was good with Garrett. He tried to blow her off and follow his own agenda, but she got him to cooperate pretty well.....for Garrett!! She thinks that she only needs to see him quarterly to keep an eye on his skills and his skinny body and to keep a watch on his foot braces (orthotics). He is about to outgrow the length of the current ones, and they are very large for his foot in diameter.....not sure why....he hasn't lost weight, but his body has changed a good bit...getting tall and skinny. She recommended getting him into a preschool gymnastics class to help his upper body strength. She realized, after spending a few minutes with him, that clinical therapy isn't going to work for him. She also wants us to keep him swimming at the YMCA as that is so good for his entire body. We are planning to get him back into swim lessons soon, too. She mentioned t-ball and I am still chewing on that and trying to stop rolling my eyes....I just cannot imagine how to get that all done!!! We currently have him swimming two nights per week and the gymnastics can work out pretty well for us to coincide with Ainslee's gm schedule. The PT will be talking with the OT to get a plan together with her and give us more ideas. She loved that he likes to push his wheelbarrow as that takes his upper body to balance. She likes him picking up rocks with me and swinging on the trapeze par on our swingset. We just have to keep accidentally getting therapy in on a daily value!!

By the time the PT was done with Garrett and the OT took him, he only had about 15 good minutes left of tolerance. She sat down to discuss with me after the PT and I talked and Garrett was beside himself ready to LEAVE!!!!! He started with a clear, runny nose this morning, but was getting worse and telling me his ear hurt.....great. He was screaming, banging on the door, begging to leave and all the OT could say was that he is very behind and that she needed to see him. I tried to listen past Garrett's tantrum and finally, in tears, excused myself and just yelled, "If you would like to talk to me about him, just call me sometime and we will try to talk then!!" And I walked out. Hmmm.....I will hold my breath!!!

I drove across the street to beg for an appointment with our pediatrician for today, and of course she is out today, but they squeezed us in about 2.5 hours later for an appointment with another pediatrician there. Garrett and I went to the feed store to get corn and barley for the heifers and cruised the feed store with the shopping cart.....Garrett's favorite!! We then hit a couple of thrift stores, a quarter helicopter ride deal outside a grocery store, McDonalds, his favorite, but he choked on everything and just got more upset in the car, and finally to the park across from the YMCA. He had a very nice time playing. He has had our Sony portable DVD player in my Yukon the last couple of drives, and that is working to help some. He just keeps wanting to switch DVDs, which can make for hazardous driving and very scratched DVDs when he throws them and drops them on the floor. If I could just get him to stick to one movie at a time, I think the DVD player might be a good vehicle pacifier for him. Finally, the pediatrician looked in his ears and they were fine. Garrett let the LPN check his pulse ox...that little thing they put on your finger.....first time he EVER let anyone do that!!! And then of course, the machine malfunctioned....figures!!! We have no idea how much oxygen this kiddo is getting because he will not let us check it when he is awake, but maybe that is changing! Dr. said he has a virus and wrote Nasonex for him, which has worked in the past and told me to try a children's DM medicine over the counter. I handed him the handout from Dr. Koenig that is an interdisciplinary care information sheet about his Mitochondrial Disease, and the doctor told me to be sure to call if he gets worse. My concern right not is that he is not eating or drinking at all, really. He had 4 sips of a milkshake, spit out a chicken nugget, and had about sips of his favorite chocolate soy milk tonight, but he did eat a small bowl of grits. He is sleeping well now on two pillows in his big boy bed.

We have two neurophysychology appointments set up as of today. The first one is on the 16th of March and is 3-4 hours...I have to laugh out loud at that...I cannot imagine how we can let that happen!! Then we have another one just like that two weeks later.....still laughing!! They better have some sort of reeeeeeally entertaining dog and pony show for us there to keep him in any building that long!!! I hate to feel so pessimistic about these things, but learning more about Mito and just re-reading the information I have about Mito I see that his mental and physical issues do not stem from what most people's mental issues stem from, things like chemical imbalances, hormone problems and such. He does not make enough energy to fuel his body. Period. So we have him on two meds for mental issues, Risperidone and Zoloft, but we cannot tell how much they are helping. Talk to people who take Zoloft, and you will hear them (adults or parents of kiddos on it) say that it makes things so much better or does nothing. But for Garrett, we just can't know if it can help because the problem isn't the common problem of a disconnect or chemical problem.....it's a lack of energy. So it might be helping, might not, but we have a hard time telling. So now as we move forward getting help with his mental issues and behavioral issues specifically, I fear there isn't really something that will fix much or even be improved. I will try. I told my mom and Grouchy I would get up every morning and run a marathon or cut off a finger, or well, ANYTHING to get this little kiddo help he needs to straighten things out. I seriously would. But I am sensing that none of these typical approaches can make a huge difference because the root cause being energy. Sure, we will try. I beg God something will help.....even a little here and there. How do we best get him to listen and obey and not run into traffic and across parking lots with no care for our voices? How do I get him to consistently obey when I ask him to pick up something, have a diaper changed or change activities? How do we keep him from freaking out at home when he isn't at school or in a rigid routine? How do I get him to stop screaming that he wants to hit himself and then hits himself when we fuss at him about something or tell him to stop doing something? How do we best stop his hitting and kicking his sisters, our cars, the walls and doors???? And there's more but my cold meds are kicking in and my eyes are crossing.

If you are still here at the end of the marathon post, you deserve a medal!!

Please pray for the Mito families who are inpatient and at home with hospice, clinging to life tonight. As of tonight, this disease is progressive with no cure. Please consider donating through www.mda.org, www.mitoaction.org, or www.umdf.org. Science is trying. Children are suffering, and if we all pitch in, we can see treatments in our lifetimes.....hopefully.

Godspeed,
Clara-Leigh