It has been two years since I have posted any updates? I really let time get away from me. Red went to High School and Hively went to Middle School. I celebrated my 20 year high school reunion (and lived to tell about it). We kept busy with sports and studies. I switched employers. All pretty basic boring changes. No new loves or pets or family members, just the same old life just 2 years down the road. I have written in that time, but mostly in old fashioned pen and paper journal form. I may type them here and post them. We will see if the mood modivates me to do that. The Queen Is Back.
A good week.
Hively’s “other” grandparents took him out for shrimp yesterday. He is allergic to shellfish. I tell him to not eat it. He does anyway. Today his face is puffy. I have implored him to not eat shrimp again. I hope he will keep his word to me that he won’t. It must be so easy to be those “other” people. The ones who do not have to deal with these many chronic illnesses and issues on a daily basis. It must be so easy and nice.
This weeks meds:
Hydroxyzine 2x/day, Ranitidine 2x/day, Albuteral, Focalin XR, Synthroid.
Also, the teacher is going against the 504 and changing the expectations of him all on her own. No consulting with me or the psychologist. She is a real piece of work. I will be so grateful when this year is done. I will be happy when I do not have to deal with her anymore because she so obviously doesn’t care about my child or his success in education.
Not everyone is teacher material! It is a low paying job. You have to deal with a lot of administration crap. You may have a nice schedule but the trade off isn’t necessarily worth it. You get sick a lot because all children are carrier monkeys. It is truly a labor of love. It is a job you do because you love children, and you love the look a child gets when that light goes off in their head because they get the concept you are teaching. Not everyone is teacher material. I know I am not. I also know this teacher we have this year isn’t either. It doesn’t matter how many days a week she misses because she is in seminars or training. None of these are doing any good for her, she is just not teacher material.
As I tucked Hively into his bed he proudly told me he completed 5 levels of a Math program at school today.
This was the first time ever.
Most of his peers have been doing this for the past 4 years already.
I was so happy, proud and grateful all at once.
I have always known that he is very intelligent, it was just a matter of putting the pieces of his particular puzzle together so everyone else could see that too.
Praise God for this giant step forward!
I am wondering if Medical Monday was a great idea. Considering it is Tuesday and I spent Medical Monday and the Sunday & Saturday prior with 102 fever, chills, wheezing, coughing, basically dying all on my own. Seriously, did I bring this on myself? Yeah, probably not, but in explanation there was a great reason why I didn’t update yesterday.
I wanted to spend yesterday talking about how extremely difficult it is to parent a child with special needs like my Hively has, when there is very little support from the teacher in his classroom.
Monday 1/3/2011 was the first day back from the 16 day Holiday Break. My intention over the last 7 days of that time was to begin Hively on the Focalin XR – 10mg/day. He has had some pretty serious attention issues this year so far and there was a process of doctor visits that lead to this prescription. This was a decision I made after 3 solid school years of trying to work this out with the teachers one on one. Then this year trying to get teacher help via a 504 plan thru the school.
This is a very long story, one I really do not feel up to trying right now as I am still sick. So I will save it for a different day and jump to the point. Because he was sick with this flu bug and fighting it off caused him a hive and angio-adema outbreak, I just couldn’t add the meds with all the steroids and antibiotics. So, on Monday we started it and he took it all week. I sent a note to the teacher via Hively to let her know I would be emailing her (her policy). I then emailed her on Monday morning simply stating:
I hope you had a nice holiday break.
Hively has started his new ADD meds today. If you could please help me by noticing any alterations, good or bad – same or different, in his behaviors/moods. I will watch at home as well but you will be with him for the majority of the time the meds are working full force. I’m sure you know how this is a trial and error situation until we find the right dosage and brand that best fits and works well for him and his specific needs.
If you need to contact me I am always available @ —– or via email.
If it works for you, I will contact you again on Friday to see how the week goes.
Thanks for all your help as we begin this process.
I did not hear back from her. I waited until dinner then asked Hively if he had given her the note and he had. I checked again before bed thinking she may not check email until late in the day. There was no reply. I decided to wait until morning and see if I got a reply. NOPE! So I called the school to leave her a message. She answered the phone…during class…huh? But she found it difficult to reply to my email? I just wanted to a simple “I understand, we will speak on Friday.” 2 seconds. It took me less than 2 seconds to type that. Okay maybe 5 seconds considering she also had to click reply and send. Less time than it took her to answer the phone, act like she was annoyed I was calling her and respond to me with some petty excuse for why she hadn’t replied. I just find it ridiculous. It is a very hard process, ADD I mean. It is extremely difficult added to all his other issues. It is sometimes unbearably hard on me considering I am doing all this by myself. It would be nice to have a teacher who was considerate. (I guess since she is a single mom herself I expect even more consideration, the consideration and compassion I know I have towards other single moms.) This particular educator was out of the class 1.5 days this week. She did send me an update on Friday – but I can’t help but take it with a grain of salt considering she wasn’t there for this time. She said that he had a good week. I know at home I noticed him to be calmer and that less class work came home, also what did come home he completed very easily. I just wish I could have confidence in what she has to say when she is with him for hours every day. But how can I when it is obvious, from an established pattern that she does not care about my child or his educational, let alone personal issues.
Hively had a pretty good week himself.
Some minor muscle aches (joints, ankles, knees, shoulders mostly).
This weeks meds:
Hydroxyzine 2x/day, Ranitidine 2x/day, Albuteral, Focalin XR, Synthroid.
There are so many things that happen in the course of just a day. It is auto-pilot usually. But Thursdays tend to be a slowed down relaxed day. Usually the only one I can count on. It is a casual day at my office so I get to sleep a minute later and the whole day moves slowly from there (slowly in a good way, not a dragging way). So change number 2 for this year on here is Thoughtful Thursdays.
This week I am thinking of how much someone can miss out on by being an absent parent. It has been a hard road raising my little blessings alone, but more than the struggles there are memories and a closeness that their father has missed out on. I know I am their mom but it amazes me that someone can walk away from their children, these children, who at times can be so much work and such a headache, but who are such amazing people.
I am daily amazed at my daughter’s insight. At 12 she can read people like a book. She has a strong will and this integrity that we need more of in this world. She uses her powers for evil some days in the form of manipulating her way out of me and her brother. But she mostly uses her gifts to be a good person and to be helpful to her peers. I occasionally get these glimpses of her when she is 24ish and we are very close good friends. These glimpses get me thru the teen/mom battles that threaten to crush my resolve to succeed at this journey I am on. She is so beautiful too, I can not believe in 3 months she will officially be a teenager, she is not one of those girls everyone wishes they are, she is not obviously gorgeous, but those girls are so few and far between. Most girls in her age group seem to be content to be followers of those rare creatures, but again my Red’s integrity surfaces and she is more content to be independent and quietly grow into who she is becoming rather than ride the coattails of another. She is more the person who becomes more beautiful as she ages and grows in intelligence and in physical beauty. One of those woman who are just comfortable and confident in who they are.
I can not fathom not knowing all of this about her!
I wouldn’t trade my knowledge of her inner workings for anything in this world.
There is a young pregnant mom with two young kids who suffered a terrible, tragic loss in the past couple months. (http://veronking2003.blogspot.com/)
Their world crashed to a halt when her husband and their daddy suddenly dropped dead at the age of 31. Leaving this happily married young mother a widow and a single mama. You can read about her via her blog and you can support her through much prayer and by clicking the link below:
Just click this link and visit this site everyday this month. You will be helping support this newly single mama and her babies at no cost to yourself other than a few minutes of your time. Thanks to all of you who choose to participate.
I decided I needed to get back at this.
New year- New format – New things to Chime about.
Monday – Or Medical Monday
My son “Hively” suffers from Chronic Uricaria. Caused by an AutoImmune Disorder. A normal adults IGE is below 12, Hively’s is over 500. A normal adults CU Index is less than 10, Hively’s is over 50.
(Urticaria – is a kind of skin rash notable for pale red, raised, itchy bumps. Hives is frequently caused by allergic reactions.) Much information about this illness can be found @ http://urticaria.thunderworksinc.com/index.htm.
In addition he suffers from: Hives, Asthma, Inattentive ADD, Allergies to everything environmental (tree, grass, mold, dust, cat, dog, weeds) which he gets shots for weekly, dental issues, and a hypoactive thyroid.
So on Mondays I will discuss my 10 year old son.
I will discuss how this illness impacts our lives daily.
I will discuss what symptoms he has had in the previous week.
12/26/2010-1/1/2011 angio adema, hives, muscle aches (ankles, chest and ribs)
I will let you know about all the meds he takes on a daily basis.
Hydroxyzine 2x/day, Ranitidine 2x/day, Albuteral, Prednisone, Z-Pak, Mucinez, Focalin XR, Synthroid.
I will discuss what doctors we have seen in the previous week.
Allergist 1 visit, Pediatrician 1 visit.
I will save you the spreadsheet version that I have had to maintain for the past 3 years, so that I can keep this all strait.
I will also save you the bottom line dollar wise, but as Americans you can imagine what it adds up to.
I guess this public forum is my way of discussing this topic/illness that I have had so much trouble finding info on. Maybe there are other parents out there who will have advice for me. Or maybe there is a parent at the beginning of this journey who may find some of my experience helpful.
So this is one update to this site…Medical Mondays – here we go.