Friday, January 20, 2012

Redneck Roller Coaster and Brendan in January

This has been a roller-coaster ride couple of months. It seems appropriate that I show you some pics of what I called a "redneck roller coaster"! We left Houston on December 20th making our way north to Enid, Oklahoma. We picked Brendan up from my parents in Oklahoma City. He was glad to see us and seemed very happy to get in our van and make the trek to Grandpa's house in Enid. We arrived in the dark and cold but Gammy and Grandpa had the house nice and warm and beautifully decorated for Christmas! We all slept well that night after a long trip north. The kids were hoping for snow. That didn't happen. Boredom is always lurking around the corner because we only have two hours "screen time" per day...this includes television, video games...pretty much anything electronic and entertaining. Two hours may seem like a long time, but let me tell you it flies by in a hurry and then we are left with 10 to 14 more to fill with...something. In our city, this can be really hard. Extreme heat/humidity are going to make the coming summer miserable to play out doors in spite of the swimming pool right outside our back door! But I digress. At Grandpa's house it was much easier to fill the hours...not easy, mind you, but easier!

Randy and his dad took the kids out to practice shooting selections from Grandpa's impressive arsenal. I don't have a problem with them doing target practice. Randy is exceptionally careful and I tell myself they are doing it for sport...and I personally qualified as an NRA Pro Marksman this past summer so I know it's a lot of fun. And we live in Texas. That's just how it is folks, we like our guns down here! The kids loved the shooting thing.

Grandpa has a tiny little four-wheeler thing. Andrew got to drive it first. He looked like an elephant riding on a Matchbox car! They all loved that too. But with all the cousins, there were six boys waiting for their turn on the 4-wheeler so we must find something to do to make the time go faster. I'm not sure who's idea it was to perch the children in the bucket of the tractor...I doubt Randy would admit to it but I do have my suspicions! At any rate, the brand-spankin'-new tractor was pulled into the driveway and the kids loaded up! I'm not sure who had more fun, the men operating the equipment or the kids piled up in the scoop! I ran out with my camera and then got so tickled when it hit me..."my kids are in a Redneck Roller Coaster"!
See? Raise your hands and scream everyone! This is fun! I doubt Grandpa intended his new $20k tractor be used as a roller coaster. It might have been cheaper to put in the real deal back there on the back pasture. But we ran out of time and the tractor has dual purpose...could you mow your lawn with the last roller coaster you rode? I didn't think so! And I had the comfort of knowing back and neck injuries were much less likely. I kind of worry that way. Not sure if that is the nurse or the mom in me.

We left Christmas morning to head over to my parents and spend the rest of our time away with them. Brendan loved showing his siblings all the discoveries he had made since he moved here in October. It was fun for me to hear him talk about playing at the creek. This was a favorite activity when I was his age and we would come visit my grandparents at the same property. I wonder why we never named "the creek"? I was only a couple of years old when my grandparents bought this property and "the creek" has always been there and been a favorite spot for all the grandkids (and now the great-grands) but we never named it! Hmmm...suggestions anyone? I think after nearly 40 years of service the thing deserves the honor of being named!

Brendan seems to be doing fairly well. He still has moments where he is struggling but we spent nearly two weeks with him and he did not need medication at all! His sense of humor seems very keen and he is a joy to be around so much of the time. It was wonderful to see that wonderful personality of his has been suppressed by drugs for so many years.

On New Year's Eve, Daddy wasn't feeling well and the evening ended with Mom and I taking him to the small hospital in Van Buren. He was transferred from there to the bigger hospital in Ft. Smith. The doctors all thought he was having a heart,'s an intestinal, hang on...a virus? Without telling all the hair-pulling details, lets just say that he was very sick for many days and spent four or five in the hospital the culmination of which we knew precisely very little! He seems to be fine now and all is well but we did have a very frightening several days. My personal opinion? He was likely suffering from a strangulated hiatal hernia and thanks to many prayers, he was healed before the doctors got to that part of the testing.

This was very difficult with us with our situation with Brendan. I wanted to bring him back home with us. But was this what was best for Brendan? I felt for a bit like I was making a choice between the health of our son and the health of my dad and neither choice was acceptable to me. It was frankly agonizing! By the time we got to the day we needed to leave to get the other three kids back in school on time, Dad was feeling well enough to offer his opinion and Randy and I sat down in his hospital room with he and Mom and Brendan and had a pow-wow on how to proceed. I asked Brendan what he wanted to do. My heart was racing as I waited for his answer because I didn't know what we would do if he said he wanted to come home...since he has already changed schools once this year, I am not certain how it would work for him to change again! He stated immediately that he wanted to stay in Arkansas. That was good, right? Yes. That is good. He is vested in this process and is eager for it to be successful. We talked about how much more responsibility he would need to assume to help Papa. We talked about his attitude and respect and he seemed eager to try hard to stay and continue on.

Back in December after much hounding and harassing, I finally got the blood and urine test results from the Lawlis-Peavey center and we had a protocol for chelation therapy that we are needing to get started on. The first roadblock was the expense. The drugs totaled over $700 out-of-pocket! One of my sisters-in-law gave me one of his meds as my Christmas gift the rest of it I put on a credit card and ordered online. In the therapy guidelines, the doctor wanted blood work done before we began the chelation process. He said the blood work would need to be ordered through Brendan's primary care physician. The vision therapist had wanted Brendan to get occupational therapy at school and we needed a physician prescription for that too so Mom called around and found a pediatrician for him.

When she finally got him into the pediatrician, the gentleman refused to order either! He didn't believe the vision therapy was necessary and didn't feel OT was required and he had no reason to order the blood work! Grrr! Mom called their family physician and he was happy to help. We called insurance and fired the pediatrician as Brendan's primary care physician and replaced him with the family practice guy and mom got the blood work done.

Sooooo...chelation therapy that should have happened back in December finally started this week! In the meantime Bren has been struggling at school. He can't seem to remember to bring his homework home. When he does bring it home, it is difficult to get him to get it done. Then to the frustration of his parents and grandparents, it remains in his backpack day after day while he forgets to turn it in! In the meantime, his grades are dropping. Dismally. The teachers report it is sometimes difficult to get him to do his classwork or to focus. I understand their frustration totally. There is no way they can micromanage each child and make certain they do it right.

Chelation started on Monday. Twelve pills total in the morning and another twelve at bedtime! Brendan is good at taking pills but has had stomach cramps and vomiting with them so I am not sure how well it is going to work out. I have written the doctors at Lawlis-Peavey center last week to request advice on his grades/school work/focus issues and again two days ago to report the intestinal symptoms with the chelation therapy. I did receive a very brief note 11 days ago from our "point of contact" doctor there stating that he wanted to discuss the case with Dr. Lawlis as Dr. Lawlis was very interested in Brendan's particular case and had asked to remain "in the loop" regarding him. He indicated that he would be getting back with me. I have heard nothing.

I won't lie to you. I am frustrated and angry. We drained every penny we have to pay for what we thought would give us answers for our son. We were told we would receive a report with diagnosis and prognosis as well as detailed recommendations within in 90 days. It has been 94 days now and we have heard nothing other than the preliminary report we were given the last day of testing back in October and the medical information that I had to beg and plead for for several weeks back in December. Now he is having a reaction to the medication protocol they prescribed and they are remaining silent when I frantically email our "point-of-contact" doctor. I don't know what to do or who to call.

Brendan, in the meantime is trying his hardest to soldier through. I told Mom not to give him the meds Wednesday night but he came back downstairs later on and told her he wanted to take them. He is hoping as hard as we are that it will help. I'll be frank. I am so tired of hoping against hope that this will be the answer. The next test, medication, therapy or parlor trick will do the job. Our son will get better and we will be able to bring him home. I hear the exhaustion in my Mother's voice every day when I call. I hear the frustration in my Dad's voice when he talks to Brendan or one of us. I know how hard this journey is - I've been trudging this road for almost 14 years. It is harder to be here and hear the pain, frustration and anger of all parties involved and be unable to give my parents a break or hold my son for a few minutes and remind him of what a great kid he is and how much I love to kiss his freckles and hear his laughter bubbling up from his toenails. I can't tell you how many times this past week I have wanted to climb in our blue minivan and head north to get my son. The only thing restraining me from doing that very thing is the belief that it would do greater harm than good for him to be taken out of school again.

We got a call yesterday from the assistant principal. Brendan was fighting after school with another child. We don't have all the details. When I asked Brendan about it, he told me that the other child started throwing wet leaves on him and calling him names. I do know the AP told us that both kids were receiving punishment so I doubt either of them is blameless. This is hard. It seems that impulse control is very difficult for Brendan and when others know how to push his buttons, it is a very volatile situation. He must learn these skills but I have no idea how.

For now, he remains in Arkansas. Mom has said (and I agree) that we need to find another option for next year. Due to our finances that means we will be back at the same junior high next year here in Katy. I have no idea how that will work out. I'm trying hard to trust that God has Brendan's best interest close to His heart and He will work it all out for the best. I know that in the end, one way or another, God's will will be done...I am just frightened about the road between here and there. From here it looks pretty rough...For now, I'm just gonna remember what it feels like to hold him tight!

1 comment:

A Romantic Porch said...

I am so sorry. We have to hold on to trust that God is working everything out. It is so hard to wait. Love you, Rachel