Wednesday, August 31, 2011
We are so far thrilled with the Daytrana patch. Harrison is doing well and he is much happier. I spoke with the pediatrician today and she wants to up the dosage a bit since his teacher and family both noticed that he is a bit sporadic and still hyper. He is focused enough to get his work done at school but he bounces all over the place. We have noticed the same at home. He is able to focus, but he is still all over the place when he is not doing something that captivates him.
A bonus, he is getting along with his sister much, much better. They have always fought like cats and dogs and he is so much more agreeable on the patch that they are getting along famously! I think it is because he is a lot less irritable and he tolerates so much more. I am so happy to see them playing together for hours without arguing and smacking one another! I think they have only gotten mad at one another maybe twice in a week! That is a miracle!
It actually makes me sad that a medication he was on for 4 years made him so irritable and I did not notice it. I feel horrible that he had to live feeling like that and not understanding that it was preventable. We, as parents, have such an awesome responsibility to advocate for our kids and when we fail them in some way it is very sobering. I hope this medication continues to serve him well and always his mind to be calm and peaceful.
Monday, August 29, 2011
I was gifted some fabric from a friend who was purging her house. I scored a large curtain made out of this wonderful stripe and a bunch of left overs (at least 3 yards). I actually wavered between taking the left overs or not and finally decided that I would. I am so glad.
It has been sitting in my closet for the summer and I finally decided to break it out and do something about the sofa.
I made a couple coverlets for each side of the sectional. They were basically made from large rectangles with a smaller triangular top and I just hemmed the edges. On the tops, I made a channel similar to a curtain rod hole so I could tuck in a 1x2 peice of wood. That wood tucks into the crevice of the couch between the top and bottom cushions. The wood helps hold it in so it won't shift when we sit on it. (I learned that years ago on Decorating Cents on HGTV, I loved that show!) For the bottom, I simply made little straps that hooked on the legs of the sofa. I am hoping this helps the fabric not shift around and drive my nuts!
This is the top where the board tucks into the channel. This just got wedged in between the top and bottom cushions. Works great!
I was too lazy to take the bottom straps off to take a picture, but see how well it holds the fabric straight and taut.
The pillow covers are a simple envelope type and are made with the strips on the back and a pretty complimentary flowered on the top. The old pillows simply tucked right inside and are easily washable for the pesky kids.
Here's one side of the finished sofa. What'cha think?
My mom picked us up and we headed over to the splash pad. At first he was a little leery and I reassured him that the fear was from his medication and the last time that he was at the plash pad he was fine. He looked around and ran off to the playground equipment after his sister promised to stay near him. After about minutes I did see him screech about a bug but he recovered quickly and kept playing (without the hollering, the stiff body and the major vigilance). Within about 10 minutes he had left his sister's side and found a couple friends to play with. He played for 3 hours, ate fruit and ran like a maniac. He only noticed a bug 3 times and each time it was a quick recovery. I think we have this thing licked!
I do not know yet how school recess went, but I have confidence we can get through this! Yay!
*Update: he told me "I had no freak-outs at recess." He was so proud! So am I!
Friday, August 26, 2011
Over the summer we started seeing some difficult break through behaviors and I did not want to up the dose over the summer. The pediatrician decided to increase the dosage in August so he could get a good running-start into the new school year. Prior to the increase we started seeing a bit more agitation and some fears creeping in. The biggest fear was of bugs. He was not able to sleep at nights until after 1:00 pm some nights. He also started picking his fingers, his lips and any sores. You could tell there was some anxiety there and I thought it was simply that the increase was needed.
With the increase the symptoms just kept getting worse. The fear of bugs took over to the point where he refused to go outside. This is a child who lives to be outdoors. He would FREAK OUT if he saw a bug and was in constant vigilance for about a half hour after. There was no calming him down. When he as not with me it was even worse. He would scream like I have never heard before. It was as though he was being kidnapped. He was absolutely hysterical. He is 9 and in 4th grade. It was totally out of character.
With school starting I really thought the peer pressure would stop the behavior. He begged me not to tell them and swore he could control it at school. I was wrong. Three days into the school year and I was getting a call from the case manager at school. She was very concerned. They had just had a very severe reaction and I called the pediatrician. She asked me to bring him in the next morning concerned it was a reaction.
I googled Focalin XR and fear of bugs and lo' and behold, it is a common irrational phobia! Forums were packed with info about this. The ped said that it is fairly common and that his body was simply "saturated" with the drug and it was time to switch. He is now on the Daytrana patch. Yesterday he had a bit of a hiccup about 2 hours into wearing it and was complaining of chest pains. The ped said to remove it and he had an EKG this morning. Everything was fine so they put him back on it.
Hopefully this med will do the trick. She did say that it is known for less side effects concerning appetite since it is not going into his stomach. Another positive is that we can remove it earlier and the effects will stop so he can get more sleep. I am hoping the transition is an easy one and we get back on track quickly. The school is being very cooperative and quite kind about the whole thing. The bug thing should stop as the Focalin is cokmpletely out of his system in 4 days unless we end up dealing with it as alearned behavior. Last night I told him that his medication was causing the fear and he said, "Oh! That's why I am so afraid. I have never been afraid before so that makes sense." He is a logical kid so maybe it will be that easy! Fingers crossed.
Thursday, August 25, 2011
Friday evening was the last time I saw him conscious.
That Sunday evening is emblazoned on my brain. He had a corner room and it was filled with family and friends. We were all sitting around telling stories and just being with one another. I had something and we all laughed, and dad opened his eyes. Several of us jumped up and went to his bedside, but it was painfully obvious that he was not with us, but looking at something else, a better place. He was not seeing the hospital room filled with family and friends, but I like to think he was seeing the face of Jesus. The nurses came in and checked his vitals. His breathing was shallow and his heart was still beating. I hope he could feel us and the love we were sending as we waited patiently for his body to shut down. I recall my mother sitting on the right side of his bed and stroking his face while I held his hand, my brother was at our side. Our Sunday night church service had just ended and my parent's close friends came over to see how we were holding up. As soon as they walked into the room and up to the bed, my dad closed his eyes and it was over. I still believe he saw them and knew it was okay to give up. It was time to rest.
Leaving the hospital was surreal. Going home to my mom's house was even worse. Our new world had begun.
My dad was young, only 45 when he lost his fight with cancer. He fought hard up until the very end. I married the following summer. My biggest regret is that dad did not get to meet my husband or walk me down the isle. I did not get to have him walk me down the isle so I chose not to have a traditional wedding ceremony. I never got to see his face light up as my babies came running to him or get to see him lift them up into his arms. I know he is in the presence of Jesus and I know, one day, we will see him again.
Monday, August 22, 2011
This summer has been difficult. Dustin has run out more times than I care to think about. My injury to my leg has been pretty catastrophic to the remainder of my summer. Being immobile with a child like Dustin simply invites him to misbehave. A child who is under constant and total supervision around others is difficult at best, let alone when one adult is not able to get up and see what is going on. I had no idea how depleted my stores of positivity were.
On Saturday, I was having a texting conversation with a momma who understands what our family is like because she has lived it. She has been through hell and back. She has survived so I know it is possible. Corey placed up in the same home for next year’s Orlando retreat and we started emailing. Emails turned to texts, texts to phone calls. Phone calls turned to middle of the night blubbering sessions on my end when I was medicated and laid up on bed rest for two weeks. We have become closer than I thought possible with someone who I have never laid eyes on. Saturday that all changed.
Her family decided to take an impromptu trip to the Windy City and we decided that since it was midway between us we would join them for a quick overnight trip. We ran around and packed quickly while she searched for rooms on a very busy weekend in Chicago. We found a really nice place that was just about exactly half way between us a bit out of the city.
When I hugged her neck I felt like I was hugging a long lost sister. The best part was that I knew she understood my family. I was completely relaxed around my kids’ behaviors because I knew she understood. She was completely relaxed around my kids’ behaviors because she has dealt with the same things. Oddly enough, Dustin sensed that feeling of at ease and did really well. He really only had a couple of issues and of talking back and being difficult which are so minor in the scheme of everyday life that I could not truly ask for better. It was amazing! Her bio kids and m biokids got along swimmingly (and not just in the pool! Har Har!) The hubs both got along well, it was slightly miraculous. I do however think that sticking all the kids in the car with her hubs while we rode in my car with my hubs was not so welcomed and we likely won’t get away with that one again!
The best part of the weekend is when I called Dustin back to stay behind me. He said, “Mom! I am okay with Gala, she can handle me. She is just like you!” The look of defeat on his face was priceless. It was fabulous. I did not feel like I was sitting with a mom of perfect children who was judging my kids and their not-so-perfect behaviors. She was real. She got it. And she loved us anyway.
I am not sure you understand how priceless that is. I am not sure I understood how priceless that was until today. I am not certain that I can live the remainder of my life without her in it. I am thankful that I don’t have to.
(In the craziness I forgot to take my camera. These pics are from my phone, not too shabby!)
Saturday, August 20, 2011
Do you know what that is like? It is pure gold.
And my soul sister? I knew her before I hugged her neck.We have cried together and laughed together. It is like meeting a long lost friend. Tomorrow we will travel into the city and have some fun.
This is NOT the last time we will be together. I have a feeling I will be putting lots of miles on my car to spend time with someone who gets us and loves us anyway!
Friday, August 19, 2011
I said it. OVER . A. WEEK. This is a record of sorts for us. He was attempting to earn an upgrade to his hand held game system and had done a really nice job of not only not running, but not threatening to run in almost 10 days. I thought it was a milestone. He got his upgrade on Wednesday.
He ran out shortly after 2:00am last night.
He was gone for nearly 2 hours.
My husband kept catching sight of him while he tried to follow him in the van. He ran to the van without knowing his phone as at home and he didn't want to go back to get it knowing he would likely lose sight of him and not know where he was in the middle of the night. (He has the patience of Job!) Apparently Dustin grabbed a large stick (about the size of a baseball bat in diameter, only longer) and was hitting the metal railing of our River Greenway (a trail system that runs ear our house) and screaming "Heeeeeeeeeeeelp! I don't want to go with him!" Eventually it likely woke someone in the house along the street where the Greenway is and they called police. An officer who is familiar with Dustin's shenanigans came around the corner nd hollered for Dustin to "Stop! And drop the stick!" He did, but it took some coercing for him to come down off the hill of the Greenwway.
Once down, the officer asked him why he did not want to go home and Dustin answered, "He too my remote!" The officer asked why and Dustin said, "Because he wouldn't let me watch Pokemon."
Swear. To. Goodness.
The officer shook his head and sent him home with Robert.
Oi, my life! Thankfully this time I was blissfully unaware and sleeping . . . .
Thursday, August 11, 2011
This injury has taught me to be still. And it is killing me!
I am not able to do much of anything in the way of projects. This week I went back to work and I am able to do my desk work. Of course my field trip days are over as our supervisor has picked up my slack. (my tan is nearly gone!) I have been able to get some much neglected desk work done and I am helping with the enrollment for the new school year. But home is another story, I sit around and see so much that either needs done or could be done that it drives me crazy!
This week I did scoot on my knee-scooter and pull weeds while my husband did my favorite job of mowing the lawn. And last night we had to replace the handrail on our front porch steps. It was falling down and I needed it to get down the steps with one leg. I knocked it down and my hubby went to pick up materials to fix it. I sat on a little stool on the porch and
I guess God is trying to teach my patience and to learn to rest. I am apparently not a good listener! My kids are also learning to be helpful and dilligent in cleaning up after themselves. They have always done what they were asked, but they have never been very good about putting things away when they are done. They are learning that that behavior makes for more work in the long run and when mommy is not around to do it for you it takes effort. That is a good life lesson.
Last night my husband said, "You need to get better soon. I am starting to see things that need to be done and take care of them! " LOL I think he is finally understanding all I do around the house and he is getting good at learning to multi-task.
We are all learning lessons. The biggest lesson I learned is that I am not 16 anymore and I don't bounce as well as I once did!
Sunday, August 07, 2011
This family has been called to serve and they worry about nothing more than the youth that are under their ministry. They raise their own children to be kind, helpful and humble. They provide an awesome example to their youth of how a christian family should behave and I am proud to call them friends.
Friday, August 05, 2011
Each time today we were able to thwart his forward progress, but he knows I am disabled right now with one working leg and I think he is taking advantage of it. Boo. I also think he is becoming more excited about going back to school (he prefers it to staying home and likes the routine) and is testing some boundaries. We also kept the kids home from daycare today so we could register them for school. It was a perfect storm for Dustin and I hope it goes better this weekend. I cannot take much more running out!
On a good note, I was out for about 6 hours today and I did pretty good! I had been worried about my endurance since I have been laying around and sleeping off pain meds for 2 weeks, but I did okay. I came home, took pain meds and crashed for hours, but it was a good day as far as my leg was concerned.
Wednesday, August 03, 2011
My step brother and his wife are embarking on a new journey. Doug left this past Monday with a large trailer packed the the brim with belongings to head down to Mexico. He crossed the border today and prayers were answered as it pretty much went off without a hitch although he still has 16 hours ahead of him. His wife, Kari, and their 3 kids are flying into Mexico on Friday. Their main focus is aiding and supporting orphans and pastors in Guadalajara, Mexico.
They are taking a huge step of faith and doing what they feel called to do. I admire them for selflessly going and working for the orphans in that area. I pray for their safety and their good health. I am proud to call them family♥
If you are the praying kind, please send a prayer for them. If not, good thought, kind words, good mojo, etc are always welcomed. You can follow their ministry here. Or follow them on facebook here.
any. longer. As soon as I was taken into the "casting room" at the doctor's office I was thrilled to hear the splint was coming off.
My leg was thrilled to be free of that itchy, irritating splint. It felt great to rub my skin and feel the air! After 13 days it is the little things that make you happy!
Ugly bruising and swelling. Nice cankle eh?!
Stitches were also removed today and they added some surgical glue and steri-strips. Those can come off in a week. She said they will come off on their own, but if they are peeling and icky I can take them off. Little did she know that I am a picker!
The plate and screws are holding the ligament in place for healing. I was put in a ankle immobilizer boot and I am still not allowed to do any weight bearing for 4 more weeks. No driving for at least 2 months. I am supposed to take off the boot at least 3 times a day and work on my ankle mobility for 15 minutes each time. That sounds fabulous, the reality is that it hurts like a BOOOTY! The good news is that I can shower without the boot! Yay!
I am also allowed to go back to work with restricted duty next Monday. I am looking forward to getting back into a routine and getting my life back. I have been authorized to get one of those scooters that you place your knee on and walk, that will make my life oh-so-much easier.
While this has truly sucked and been very painful I am very lucky that I am this far into my recovery already. I am blessed to have a boss who is understanding, a husband and kids who are super helpful and a wonderful doctor and staff. Thanks for all the kind words on facebook, the food brought over by friends and all the kind texts and emails. I am blessed!
Monday, August 01, 2011
I am a tough cookie to live with. And he is not exactly a perfect man. We are human. We do however love one another and our children more than anything else in this world. The stress of dealing with a child such as Dustin and the myriad of difficult issues that comes with that is tremendous. The stress of raising 2 bio kids in this environment and trying to make their lives as normal as possible is quite large. Sometimes it is easiest to take our stress out on the people whom we love the most and I know I am guilty of that. So many marriages who deal with special needs kids collapse under the pressure of daily living. I can totally understand that. I am proud that although we bicker and argue we can stick through this and make it work. It takes lots of compromise and lots of understanding.
I wrote this post last year for my anniversary and I want to share it again. Because every part of it rings true today . . .
From our first date, I knew you were "the one". I love you with my whole heart. We have had our fair share of difficulties, but we have stuck through. We both came into this marriage knowing that divorce was not an option, so whatever it was we made it work. You have patience beyond measure and you have taught me that perseverance is a gift.
Thirteen years ago I married my best friend. We have survived my OCD diagnosis, your brain tumor diagnosis and surgery, foster care, adoption, Fetal Alcohol Syndrome, 2 pregnancies and the daily care of 3 children. I wouldn't change one thing. Everything we have done has not only made us stronger individuals, but has made us a stronger pair. I love you beyond measure.
I love the way you make our children laugh. I love the pride I see in your eyes when you look at our children. I love the kindness and patience you show with Dustin. I love your humor. I love your passion for justice and peace. I love your kindness and your gentle spirit. I love your positive outlook. I love your never-give-up attitude. I love the way you love me through all my faults. I love you.