To do or not to do?

    This is my question for the day that I already made the decision on, but wonder if it was the right one.The question on whether to medicate a child or not  for behavior is one that has been asked a million times over by parents lately. We grapple with this decision for many reasons, will they have side effects, will they be too tired, will they work overall and help the child? I grappled with these same questions over and over again in many situations. The decision in Henry's case was fairly an easy one and what a difference it did make. He could finally get through a day with fewer difficulties. Now his med count stands at three, one for ADHD and his attention, one for the Tourettes tics, and now one to help with his overall mood which has been suggested as depression. This might sound like a lot, but he receives regular check ups and is monitored closely to make sure they are doing what they are supposed to. I truly believe they are helping him in a lot of ways.
    My issue at hand is with Austin. As of kindergarten last year, he was the model student, well behaved, listened and followed directions, etc. His teacher this year in 1st grade did not have the same opinion after the first couple months went by with constant behavior struggles at school and home. What happened, I ask myself every day. Did I screw something else up? Is it genetic that I have to mess up all my kids in so many ways? Was something different going on at home the school asked me? Maybe it is just middle child syndrome or he just needs more attention, I am baffled by the change. Well, now what to do about it.  After many talks with his teacher and doctor it was decided that yes ADHD does run in families and now looking back Shawn probably had it when he was younger and seeings that Henry already had the diagnosis, it was a high probability that another child was stricken with ADHD.
      Can anything else be wrong with my poor babies? Talk about feeling like a screw up. Now we need to play by a whole other set of rules for discipline, homework battles, routine. Even though we already dealt with it, things just needed to be treated on a child to child basis. No set of rules works for all. Medication was decided on for a trial run right before Christmas, with his teacher and doctor supporting me, here we embarked on another roller coaster ride. Well, a difference was noted and still is. His behavior and attention in general did improve, but at a cost. Now we struggle with the fact that Austin cannot swallow pills and his med only comes in that form. I pour it in his drink at breakfast and hope he finishes it. Shawn is a little more abrupt and makes him swallow it whole while he cries till it goes down. Am I a softie or is he playing me everyday? He has opened up recently to a family member who did Not even like the idea of him being on meds and told her that the medicine makes him feel sick. He has mentioned that to me also, guess that is why he has lost over 10 pounds since being on it. My stocky boy thinned out a lot, even though he looks great losing that much is not good. Now after two days of not taking the medicine, he was unbearable and miserable today. His attitude was just terrible and he was so negative about himself, which is another story within itself. Off to the doctor on Thursday to make some decisions, either a med change, no meds at all, or something else. Not sure what is going to be best. I hate to see my kids suffer in any way, but which kind of suffereing is better then the other. It is another battle that I will fight to see my almost seven year old flourish in life. He has overcome so many obstacles already and will have many more to face as he ages with his bleeding issues, but I will be there through it all with him, even if it takes a couple of tears along the way and an extra bottle of excedrin migraine to see me through.

Changes

      Since my last post so much has happened for the good, I hope. Three weeks ago, I went away for a 72 hour "walk" as it was called and left seeing my life in a whole new perspective. I left on a Thursday night full of anxiety and stress because I was leaving the kids, no phones allowed, and no clocks or watches to be seen. What??? After being there it all made so much sense. I was there to fully put my heart and mind into focus and see where God leads me. I had an experience I will never regret and I feel better about so many things in my life. There are so many things I cannot describe about my journey, but I will say it was life changing and I feel God really did work in me and I pray it will continue always.
    Now that Shawn and I experienced this together, I feel that our relationship has been able to grow in so many ways. We have been able to see things in a whole new light and realize together that God will take care of us no matter what. I more than ever that I am able to handle all the stuff that is put before me as long as He is my priority. I know so much of this sounds silly to some of you, but only through God am I here today through all the struggles I have had to even talk about these things. I truly believe most in my situation would be on some sort of drugs, depressed, or would of just given up by now. I now see that my faith in God though it not be as strong as it should be some days, has been the key to getting me through without the drugs and other outlets. Yes somedays, I do get frustrated, but who wouldn't in my shoes. These are pretty hard shoes to fill considering all the junk I deal with on a regular basis on top of the regular stuff.
     Shawn and I do have our struggles, but we have come to accept them as is and will be dealing with things very differently from now on and will be leaning on eachother more than ever. Statistically speaking we should of given up a long time ago, but we have managed to make it this far despite all the numbers. That could only be the work of God I tell you. I look at my own battles, childhood problems, weight issues, low self esteem, financial struggles, and the mountain of tissues over my kids and their own battles, somedays their battle to just survive. I have seen the brink of death in everyone of my children and I am telling you from wrapped cords at birth, to bleeding issues and surgery, to the little one not breathing at birth on machines and then another scare when she was two and was struggling to breath when she was very ill. I know most will see my kids today and think nothing could be wrong, but most know that is not the case. God does have a plan for all of this even though some days I do not see it yet, but here is where my patience level needs to increase.
     Anyhow, Shawn and I attended our "fourth day" program yesterday and we got to see so many of our new friends from our "walk". We both feel so blessed that we had this experience and that we are now part of a new community of people here to serve God and lead others to Him. What a gift. I have opened my heart to seeing so many opportunities to serve now and I hope and pray that my life will finally begin to make sense.

Control

     As most of you know I am a control freak to an extent that I am having a lot of anxiety about leaving for the next three days. Who can care for my babies as well as I do if they are sick, if one gets hurt especially Austin, who can cheer them on at their games this weekend, homework, etc? I know Shawn is a great loving father as he is a husband, but I still have issues with him taking full reign of the house and kids, why, I do not know. I felt the same way last year when I left to go away for a weekend for the first time since SaraAn was born. Everything worked out just fine so I should not worry, but I do.
    I am leaving tonight for a spritiual "walk" as you can call it, not many details given except that just bring comfy clothes and leave phone, watch, and all worries behind. WHAT??? My phone, worries, my lifeline even if it is just to check in and make sure all is fine. Shawn went on this journey in the fall and he cannot wait for me to get back in hopes this will calm a lot of my fears and become closer to God in an extraordinary way. I will leave here tonight with some panic thinking I am forgetting something even though I have made myself a check list and have been marking off everything as I do it today in hopes to make the ride a little smoother for Shawn for getting the kids to school, picking them up, their activites, and Austin's FIRST sleepover birthday party tomorrow night. I made it so easy for him, laid everything out, labeled everything, put things in envelopes, washed all bball uniforms for games, etc. Hopefully I can calm my fears and be able to enjoy this time away and get everything out of it I am led to receive.
     Well, my checklist is not getting done if I am here blogging so I will be back on Sunday night and will share my experiences. Please God take away all my anxiety about being away and keep my babies safe and well the next three days till my return.

Double Digits???

      Double digits, something to celebrate. I am quickly reminded that Henry will approach this monumentous milestone this year,in August. Shaking my head in disbelief, where did all that time go? Sitting at his IEP meeting this morning planning for the FIFTH grade, I was reminded how far we have come with him. This is true, from a non verbal, head banging, biting preschooler to a nine year old in all regular education classes maintaining all A's and B's. The concern of course as we move along the years is the peer pressure and the social problems that come along with his diagnosis. As his mom, I of course want nothing but the best for him and as I signed those papers today as I have been for the past seven years now, I have to almost hold back a tear or two just thinking about what the future holds for him and I am a little scared knowing how mean kids can be and how Henry will shut down and lose it if he feels he is being treated unfairly.
      I am hoping with the help of his therapist at home and his help at school he will learn to deal with the bad things in life. I feel getting him involved in the things we have has been a big help for him socially, but is it enough? I remember what it felt like to be the kid always getting picked on (yes, that was me), and trust me it does not feel too good. I would never want my child to go through that kind of pain. I guess I should worry if it happens, but being the kind of mom that does worry a little, I am going to enjoy all the great things even more because I do appreciate them more. As Henry is busy with scouts and really getting into baseball, I am going to be his biggest cheerleader and keep encouraging him to do his best no matter what others think.As I pray every night I will try not to worry so much about the things that are not in my control because I know God does have it all under control. Some days I do not like all the testing he gives us, but I have made it through another day and that matters a lot.

Wiggle,wiggle

        Finally, after much anticipation, Austin lost his first tooth. I know this is no big deal, right? With Austin it is. Trying to be excited about this monumentous milestone for a kid his age all I could think about is there any bleeding. I know a little blood is expected, but how much is enough and when should I be concerned.A tropper he is and when it first fell out he did not even realize it fell out until he noticed the blood in his mouth, we cleaned him up and he still wanted to go to school so he could ask the nurse for the pirate treasure box for his tooth. She of course gave him one and looked at me a little nervous incase it began to bleed again.
Why you may be asking is this such a big deal, why I answer is that if you don't know Austin has hemophilia and Von Willebrands disease, both blood clotting disorders.
        Austin, a fairly routine pregnancy unlike Henry, was born by csection ( he was stuck) , on June 2, 2004. A picture of health and beauty he was. Sent home in three days without a concern in sight. By three months he began having bad sinus infections, they would never end. Countless antibiotics, green snotty noses, fevers, and non stop vomiting due to such congestion, would it ever end. This went on and on for months. At the time, I worked in a day care and Austin was with me in the infant room. His poor teachers, thankfully they understood there was nothing more I could do and we would just have to deal with it. By eight months or so, the dr's were beginning to get a little concerned so they sent us to CHOP to an ENT. There it was quickly discovered that Austin was a sick little boy. His tonsils and adnoids were very enlarged and they wanted to take them out ASAP. This was the only solution for him to get any relief even though this surgery was unheard of for such a little baby. WOW!! Surgery, on our baby. We were reassured over and over that it was OK and we would have the best from CHOP on his case. Luckily at the time, CHOP Voorhees center was right around the corner and I could get Austin there when he had an appt. Off now for preop bloodwork.
        By the end of the afternoon of his bloodwork, a phone call that will shape the rest of our childs future. Surgery could not be done, you are scheduled at CHOP oncology/hemotology office Monday morning STAT. Too many problems found in his bloodwork was the explanation. Oncology? Cancer? No something must be wrong, words could not describe my feelings and how was I going to get through the weekend not knowing what was going on. Monday morning came and here we were with Austin at CHOP meeting a whole team of dr's, nurses, etc. who would be getting to the bottom of Austin's case. Dr. Travis is who we first met (now retired) , she told us there were concerns about his white cell count due to the amount of infections and that they were going to test him for cancer, but his clotting times were not right either. Many questions about family history were asked at this point and I had to act dumb, because I really had no clue. At that, now was the wait of a lifetime after they took blood form me, Shawn, and more from Austin. It had to get sent out to get to the bottom of so many questions.
          The phonecall came, thank God no c word, but many other questions lingered about his clotting times. His bloodwork showed he has a dual diagnosis of hemophilia A and 2N Von willebrands. WHAT?? Down to it, his blood does not clot right and two diferent things are causing it to be that way. It must run in the family they told me. Afterwards finding out that it did and now I am left to deal with it. Now surgery really could not be done until hours of tests are done for them to find the right treatment, different medications put through an iv and his blood drawn at different intervals. We would be sitting there for hours like the chemotherapy kids, playing games, and trying to stay focused and positive, all while I was very far along with SaraAn's pregnancy, and with Henry along. Thank goodness for the childlife team at CHOP who were all a big help to occupy.
           Now with the proper medication figured out, now to go through when it is needed and to learn to deal with his diagnosis. I could of never imagined what it was like those first few months dealing with home health care, helmets to protect his head incase he fell, the pain of the sticks if he was hurt, and just the simple fact of trying to let him be a kid and telling him to be more careful all at the same time. Only God's strength could get us through, as it did to this point. since all this Austin has under gone two surgeries, more problems with other things, and now simply trying to let him be a "normal" little boy, who is so rough and tough. More on Austin to come later, but as I finish this now, I am quickly reminded by him to not worry, it will all be OK. If only as he grows up, he realizes, that is the best attitude and that we all need to be reminded of that sometimes.

Boys, washington, and waffles

       Last Saturday found me with the two boys on a  full bus heading to Washington D.C. with the cub scouts. I was really out numbered, I had both boys by myself while all the other boys had one on one with a parent or had more then one person with them. I was feeling a little anxious. Me with two boys both with ADHD, one with Aspergers and the other one with  all his problems and ready to lose a tooth so I had to come prepared with his meds just incase of any injury or problem on the trip. WOW!! seems like a lot to just go on a trip to a place I along with them have never been before. Nervousness about the day kept my brain crazy the whole ride down.
      When there we set our plans for the day, a lot of walking, we were then on our own to do what we wanted till 4:30. For Henry we started at the Air and Space museum, a long walk to begin, Austin whining the whole time that his legs hurt, what did I get myself into? Once inside he of course was fine and got involved in some activities. since there was soo much we wanted to do we were on a time limit and it come quick, Henry impressed some of the workers with this knowledge on certain subjects and his knowledge of some spacecraft and planes. Imagine that.
    Now after another walk we came to the Natural history museum where the boys let the world know they know their anatomy while looking at the neanderthal and primordial people and statues. I ended up with a very red face and quickly had to redirect them to another part of the museum. I am glad they know the proper words for parts of the body, but did not need them to loudly acknowledge their brillance on the subject. Only my boys. Now it was a little after lunch and we wanted to go see Fords Theater and find the Subway restaurant that was on the map across the street.
  Another long walk found us in front of Fords Theater, this made Henry happy. Could not find the Subway. The boys however found across the way Lincoln's Waffle House. If anybody knows my boys they will know they LOVE waffles, so guess where we had to go for lunch. The place was a little crammed, but the boys faces said it all they loved their waffles and it made them both very happy and ready for another journey.
   Another long walk took us to Washington Monument, they were amazed by its height and we then proceeded to keep walking and find ourselves at the Vietnam Vet memorial that was requested by the boys menah(grandmom) to visit for pop pop's sake. They were a little confused why it was there, but they looked intently at it and the names and kept asking a lot of questions. Now right around the corner we saw Lincoln Memorial and the boys kept pushing me to go all the way up the steps, I kept looking and was not thrilled to do so, but Henry grabbed my hand and said "mommy I will help you", how could I say no to that gesture. I made it, impressed with myself that I did not collapse yet or my feet did not fall off. Down the steps we went and now off to the White House.
    Now the boys were showing signs of fatigue and I was getting pretty tired, but they wanted to keep on and go the extra couple of blocks to the White House. We were able to just see it from across the street, just enough to make Henry happy that he saw it. Now approaching 4:00 we started to head back so we could use the potty and get ready for the trip home. On the ride home there was a lot of excitement at first then tired finally hit most of the kids and adults except for Henry. Henry's brain was so overloaded by the days events that he could not settle down despite much effort on my part for the sake of others. He had sooo much to talk about and soo many things in his head and he needed to get it all out. I felt pretty sorry for the kids and adults trying hard to rest on the way home, even though there was nothing I could do about it.
  Finally home, the boys went to bed quickly, I was exhausted in a good way. At the end of it all felt pretty good about myself because I did it despite all the anxiety at the beginning. What a good day, my boys, Washington, and waffles.

Mega Mountains

   As I sit and realize I should be sleeping right now all I want to do is just vent. The past few weeks have been a struggle for me, craziness at work, extra hours to try to help finances a little since gas keeps climbing and the kids are always hungry, messes all around the house, and never ending problems with the kiddos. As I look back a little more then 10 years ago, I think nothing could of prepared me for the ongoing problems with the kids. I love them so much and always have put their needs in front of mine, but I am telling you some days are hard to manage without feeling like a good cry. If I could just add up the ever mounting hours spent in dr's and specialists, therapists , and the ever exhausting hours at Childrens Hospital of Philadelphia, I know it is all worth it for the sake of my babies. I have put so much of me aside from nowadays sleep, going to the gym, to just reading a book or watching the tv in hopes that my children will grow and be without their issues. I know that their issues will never be "cured", but at the same time I have done everything in my being to help them with all areas of their lives. Somedays though I still feel like I have failed them and myself.  I suppose some people will look at this as a pity me party , but I am doing this so others may feel that they are not alone in the battle to help their children achieve their highest goals.
     Henry, the oldest with aspergers, tourettes, and adhd has been our problem child lately. Some figure it is early stages of puberty, others think there is more to it. Back to therapy for him so he can help control his anger and now today hearing the word bi polar brought tears to my eyes. Could it be, it does make a lot of sense since there is a very high probable family history. We are going to try the medication route with a lot of support from his school and a new therapist. I hate as his mother to see him so anguished and so angry all the time over the stupidest things, but this is where his aspergers comes into plasy that he cannot process things the way normal kids do. WOW!! A double wammy it seems. New meds beginning tomorrow with a likely chance of seeing some difference within the next couple weeks.
      My little warrior,( they call her in karate) SaraAn will be spending some of the day at the hospital tomorrow for some more gi studies. Vomiting episodes have hit all time high 3-4 per week for over 4 weeks now. She is already on so much medication to control her asthma, reflux,and allergies. I have that mothers intiution that something is just not right for this to be going on this long. Seems endless and I am not even done. This is the little one that has fought for her life since the day she was born. I thought her near three week stay in the NICU at birth was one of the scariest moments of our lives, who would of ever thought it did not end there. I will further write about her at another time.
    To top the cake Austin who has hemophilia and another blood clotting disorder is ready to lose 4 teeth. Oh, please do not bleed. The meds are ready if any problems, but I am a nervous wreck. I am checking his teeth everyday to see how wiggly they are. He tells me "mom, just stop already". Maybe he is right, the insightfullness of a 6 year old. Try to convince me everything will be alright. Thanks to my little group of hemophilia friends who said it should not be that bad.
   As my ramblings come to an end and sleepiness is catching up to me, I needed to get this all out for some reason or another. I have been told over and over that God will not give me more then I can handle, some days I just want to laugh at that statement, but as I look at the whole picture I know with a lot of prayer it will all work out in the end. This is just another test of strength for me and I have NEVER been a failure to my children and do not plan on starting now. Updates to come. Thanks for reading.