The Lazy Diary

My exercising and yoga have all gone to the wind.  I'm so mad at myself because doing them was making me feel so fantastic.  Why is it that I know if I walk and do yoga, I'm going to be energized and feel great, yet I can't bring my lazy ass to do them?

What I'm doing is spiraling downwards, back into my old lazy habits and into my depression.  This is NOT good at all.  Not good for me or my family.  Right now my baby boy needs me to be in tip top shape because he's not.  He's having so many problems in school and it's rough on everyone.

He's being defiant in school, constantly yelling, getting sent to the VP's office and even got sent home early one day because his disruptions are out of hand.  We went to see his neuro-developmental pediatrician (she's a GREAT doctor) and she started him on ADHD meds because that is the type of behavior he is exhibiting.  We haven't changed his Autism diagnosis to ADHD yet, but I see it coming in his near future.

I was also inform last month at his neurology visit that he has a small area of brain damage in his right frontal lobe.  It's where they had to retract that part of the brain to gain access to his tumor.  I knew this could possible happen and I'm not upset, things could have been so much worse.  But the doctor said this damage is permanant.  So his case worker at school is looking into the possiblity of changing his Autism diagnosis to Traumatic Brain Injury as his primary diagnosis with ADHD as a secondary, likely caused by the TBI.

So much is going on in our home, with Glenie alone, it's so much stress.  I have to make sure I keep up on my meds to be able to deal with it all.  I do need to get back to some form of exercise because it makes me feel good and that is what I need in my life right now.

Time to talk about Sara, we can't forget about her.  But there's not much to say.  She's doing great.  She's happy and getting along very well with Glenie, which I know means the world to her.  She adores her brother.  She's home with me during the day while Glenie is at school and she's so good for me.  She's really maturing.  She does have one bad habit thought - she's addicted to junk food!  Ick!

Current Mood: Sad

My big boy started 1st grade today in a new school and he did GREAT!  He hasn't been feeling well for a week now but he felt great at school and told me he made a new friend (but doesn't remember his name, lol). Since Glenie is now in district school he doesn't take the bus which means I have to drive him and Sara has to get up in the morning.  Well Sara is a night owl and just doesn't go to sleep at night.  So when I woke her up at 8AM she was none to happy.  It was like trying to wake a teenager for school.  So by 2:30PM she was CRANKY but refused to nap.  She better get used to it!  LOL

Well Monday we finally had his appointment with his NY endocrinologist. Glenie went willingly. I talked to him about it for a few days before to prepare him. I even told him he had to go to the lab and get a needle and he was ok with it. She adjusted his diabetes medicine so he doesn't wake up soaked every morning. She's adamant that the hydrocortisone (steroid) isn't what's causing his meltdowns because he's on such a tiny dose. Two other doctors agree with her. Not much else happened at the appointment except Glenie had a mini meltdown at the lab but was ok afterwards. On Tuesday I spoke to his school case worker and told her we don't feel sending Glenie to a "regular" kindergarten is the right thing to do now and we want him to go back to the special ed school. She told me to take him to one of his doctors and see what they think and let her know at the end of the month. So this morning we went to see the neurodevelopmental pediatrician. She's the one who diagnosed him as autistic. She agrees with me that he needs to remain in special ed. She believes he's suffering from anxiety but wants to give him some time before she'll put him on meds. Which is fine by me because I don't want to just throw meds at him. She wants him to get play therapy (she's the 3rd doctor to suggest that) at school in addition to his speech and occupational therapy. She's going to write up a report for me to give to the school. I think that's about it for now.

Well today it has been one month since Glenie's operation. He's been healing wonderfully! But we have some other issues that have been plaguing us. We were hoping these issues would resolve themselves but with him starting school in a month, we have to get proactive. Glenie has almost daily meltdowns and they can sometimes be violent. I'm getting better at curbing them, but I'm not successful at curbing them all. They're really hard to deal with. When he's having a fit he doesn't really know what he wants, but he does want me. That makes it very hard when I'm with both kids by myself. I have to try very hard to keep Sara away from him so he doesn't hurt her and she gets scared. It's so tough. He also doesn't want to leave the house still. A few people, even his pediatrician, have suggested that he might think I'm going to take him back to the hospital. The problem is, he can't articulate what's wrong with him. He'll just repeat over and over again that he can't go to the store. Well wish me luck today. I have to take him to the lab for some blood work, so we HAVE to leave the house. He's pediatrician is going to test his endocrine levels to see if he's medicine is what is affecting his moods and his inability to sleep. She really doesn't think it's his medicine but she said it would almost be easier to deal with if it is. She thinks it's probably emotional and that is going to be harder to "fix". This is all really tough for me right now. I try to take it day by day but I worry about so much. He is supposed to start mainstream kindergarten this year, no special ed, but now we're not so sure if that's a good idea. We also have a vacation planned next month that has us taking a plane and a ship. How are we supposed to do that if he won't leave the house without having a meltdown? Please pray for us in these trying times!

Sorry I haven't updated in so long but not much has changed. Glenie is healing wonderfully and he's such a trooper at taking all his meds. He's happy to be home, but doesn't want to leave the house. He also has severe meltdowns that can get violent. These are issues we need to talk to his doctor about. I can't wait for that appointment! That's about it really.

This is where we needed to be! For the past few days Glenie has been having meltdown after meltdown at the hospital, it was really exhausting for both of us. I begged the doctors to let him go home and one of the house physicians talked to Glenie's endocrinologist and she let us go! They wouldn't let us go without making sure we had his medications in hand so I had to get them all from the hospital pharmacy. Luckily they had everything we needed. The only problem is they also have all the refill information. I'm sorry but I'm not going to NYUMC just to pick up his meds. So now I have to get new scripts so I can send them to our mail order company. But of course that is a problem too since his endo is now on vacation. UGH! But that aside, we are home where we're supposed to be! Glenie is doing so great! He's taking his medicines without a fuss and he's very excited to go to Pennsylvania to see his grandparents today. I want to thank you all for your prayers and support. It means the world to us and helped us get through each day. I think I finally let everything hit me last night while I was lying in bed. I just started crying out of nowhere. It was happy/relieved crying to have my baby boy here with us and for him to be ok. This has really been such a surreal ordeal and I pray we never had to go through it again.

Glen was finally discharged tonight! He is home and doing wonderfully! I will post a full update tomorrow!

Whew, I'm feeling a bit refreshed! Now I just have to cut back on the caffeine, I've been drinking WAY to much. Like I posted yesterday, Glenie is healing fantastically! He's even doing much better emotionally. We talked to his endocrinologist yesterday and she gave us a rundown of the medicines he's going to go home on (and be on for the rest of his life). He's going to have dDAVP for his diabetes insipidus, Synthroid for his thyroid and Hydrocortisone for his cortisone deficiency. The Hydrocortisone is the last one they have to get him on before he comes home. He's going to be on a few more meds but we're going to get those during our follow-ups. Last night Glen talked to the surgeon and he said Glenie should be coming home by the end of the weekend! That is such wonderful news for all of us! He's still in the ICU but I love the nurses there so much that I don't want him to be moved. I know, I'm weird. Besides, the ped rooms are so small, I'm going to feel claustrophobic if we have to move there. Tonight we get front row seats for Macy's fireworks on the East River! We're very excited about that! I think that's about it. If I forgot anything I'll add it later.

Glenie is doing so well! He's responding well to his medications and healing wonderfully from the surgery! I will definitely write a more in depth post about everything tomorrow. For now I must get some sleep!

I got great news yesterday, the MRI shows the tumor is all gone! Glenie is healing so wonderfully but emotionally he's not so well. My baby just wants to be home in his own bed but I think it will help tremendously when he is moved out of ICU, which should be sometime today! Today he is getting a PIC line inserted and afterwards should have all his IV lines removed. That will really be a load off. He's got wires everywhere and not having full use of his arms really upsets him. When they take him off the IVs they are going to start giving him his diabetes medicine in pill form and then they will start working on the other hormone replacements he needs. Things are going really well and I'm really hoping he'll be home by the end of the week! Oh, he got his bandages & drain removed yesterday too! Here is a tiny bit of his incision.