They say a picture is worth a thousand words and I can sum up my past few days with one.
Jon saw the neurologist and an orthopedics specialist last week. The neurologist ended up giving him a headache preventative called propranolol. The rest of that appointment I am shaky on because they had me leave the room and he can't remember what she told him after I left which was what I was hoping to prevent while being in there.
Next was his ortho appointment for his back, knees, and feet. They took x-rays of all three and his bones look great. They are sound and show no signs of any injury. So, that doctor is pretty sure he has an arthritis problem in those particular joints and just a mass of inflammation in the muscles and tendons. For the inflammation they gave him Mobic and for the pain they gave him Tramadol.
He starts physical therapy at WRAMC this upcoming Monday. He has to be there by 0830. Next week he also has a sleep study being done up at AAFB.
The Zoloft and Prazosin seem to be really working although I think one of his new medications are counteracting the Prazosin. He has been extremely combative in his sleep this past week. Two days ago
We have also started using a color system in the house to identify and voice emotions. For example, if I get upset, angry, irritated, etc. . .all I would have to say is "I am going to red, please go some where for a few minutes and let me get a hold on it" or say if I notice him getting agitated or a little too forceful with the boys I can say "Orange, go take a break and calm down". .
Jon responds to the color system really well. We had a safe word there for a bit but he would usually just stare at me like I was stupid when I would use it to get him to back off or to take time to myself.
Thanks to the NMC nurse, his caseworker, and the CDC, I have actually been getting some help too! Someone donated a grant to us so now the boys are in daycare three days a week plus all appointments we may have. Caleb is thriving in that environment. They lady they stay with runs the daycare out of her home and has two kids their age. They both love it.
Let's see. I took Andrew to the doctor day before yesterday for a little infection in both ears and a HUGE blood blister on his gums. I had never seen something like that before so I just wanted to make sure. They say it should burst on its own and that molar should poke through on its own. He is 28 pounds and 31 inches tall.
I feel like I am floundering here, like I am failing miserably at keeping my family grounded. Between making sure the three of them have everything they need and keeping all of us on track and schedule, I rarely have time to remember that I am here.
I keep hoping that things will level out and calm down but it seems for now that I am stuck in this state of living in fast forward. I rarely have time to breathe let alone eat or sleep. I am stuck between complete exhaustion and frenzied activity.
The bright spot in this mess of crazy has always been and will always be my boys. It is so hard to have a bad day when every time they smile at me my heart melts. Let me share one such moment,a moment that reminds me that no matter how crazy things get or how tired or sick or disheartened I may become. . I always have two smiling faces and two sets of arms that make it all better. I know that no matter what happens in my life or has happened in the past. . I must have done something right to be blessed with these two amazing little people.
Through every harrowing, nerve wracking, patience trying step of this crazy journey, I have always had the amazing support of some of the best women on this planet. They have been my strong hold, my cheerleaders, my listening ear, my open arms, they have always been my family. I would be totally wacko if not for these amazing people.
As a parting thought, I leave you with this. A long time ago my dad brought me a poem home to hang on my wall and I have leaned on it a lot these past days. It is called Don't Quit. So when you get down and you don't know if you have the strength to keep going one second longer, I give to you the same words I was given. .
When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit
Rest if you must, but don't you quit.
Life is queer with its twists and its turns,
As everyone of us sometimes learns,
And many a failure turns about
When they might have won, had they stuck it out.
Don't give up though the pace seems slow,
You may succeed with another blow.
Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up
When he might have captured the victor's cup;
And he learned too late when the night came down,
How close he was to the golden crown.
Success is failure turned inside out
The silver tint of the clouds of doubt
And you never can tell how close you are,
It may be near when it seems so far;
So stick to the fight when you're hardest hit,
It's when things seem worst that you must not quit!
Always remember this. When you get down and things get hard and rough in your life, there is always someone out there who has it so much worse.
Until next time my lovies.