Thursday, March 31, 2011

Another day

So last night was better than the night before. Except I woke up at 4a.m. and couldnt go back to sleep. Now here it is noon and I am dead tired and with good reason. On the way to school I realize I forgot Riley's insulin kit. I was to far down the hill to turn around so I decide to just drop them off then come back for it. Its about a half hour drive one way. Before coming back I stop at walmart and grab what I need. When I get back up here I let the dog out of her crate and there is now blood on my door, wall and laptop. Her tail is bleeding for some reason. Probably because she is a black lab and her tail never stops moving. I am sure she hit it on something to cause it to bleed. So I take them outside they do what dogs do and I locked the one dog back up. Back to town I go. I get to the school drop it off and decide to have them call up to Q's room to see how he was doing. He was having a bunch of drops this morning and sure enough he still was. He had 9 drops while his aide took him to the library. So I bring him back home with me. Some days I think his meds might be helping other days I think they are making them worse. In the end I guess they are not really doing anything for him at all. I believe this is the 8th seizure medication we have had him on might be 9th. After so many I am starting to lose count but I have a list.

So that was the first half of my day. Now Q is laying next to me in my bed. He likes to watch tv in here with me when he is home from school. Maybe we can both take a nap before I have to wake up and watch my nephews while my sister in law goes and picks up the other kids. Cross your fingers for me I need it 9:00p.m. wont come fast enough for me today. Again life is such...

Wednesday, March 30, 2011

On the floor again

Im sleeping on the floor again (to the tune of on the road again) because Q had a bad dream last night. I hear knocking on the Q monitor (he isnt a baby so it not a baby monitor) and get up its 2 a.m. I go to his room and he is scared because he had another bad dream. So I walk him back to my room he gets my spot in the bed next to dad. He has to sleep because of his seizures a bad nights sleep means a bad day of seizures. The poor kids has enough of them on a full nights sleep. So I grab my pillow and a blanket and crash back out on the floor. Then the alarm goes off at 3a.m. for Dad to get up. It disturbs Q just enough that I can have him scoot over into dads spot so I can reclaim mine. Out I go until I get that kiss goodbye then back out. To bad I had to get up at 11:45 p.m. as well to check Ri's blood sugars. Then 4:36 a.m. comes around and I am back up. I give Q his meds then so they have enough time to get into his system before he has to wake up. He just scared the crud out of me with a "mom I gotta go to the bathroom" so to the bathroom we went. Yes I go to the bathroom with my almost 13 yo son. He has drop seizuers and they are worse in the mornings he will be standing one second and on the floor the next. So I stand behind him with one arm under his arm and my hand across his chest braced and ready to catch him if I need too. Which I have caught him many times saving his face from being beaten by the porcelain thrown. Then I walk him back to my bed and hear him having a few seizures. His breathing now is going into his sleep breathing thankfully. All in a nights work.

Now seeing that its 6a.m. I get to start getting myself ready for the day. Put my face on find some clothes ect. At 7 comes the mad dash. Waking three kids up have them eat after Ri checks her blood sugars and I do the mat to figure out how much insulin she needs. Then help Q get dressed because of the drops again I stand there while he stand to take off and pull up his undies and pants. Then I leave him to do the rest. Then pack up Ri's lunch figure out her carbs and write how much insulin she will need on the box. Make sure she has her tester purse packed with stuff to treat lows and that she has enough strips to get her through the day. Then get her insulin kit into my purse. Brush all three kids hair and out the door we go by 7:35. Get Q in the car then grab his wheel chair. With how many drops he has its just safer and easier for him to be in it. Anyhow I get to get it in the back of my suburban which is not easy its a older chair and very heavy. Oh well I can do it at least. Then off we go to school. Where he will have a second breakfast both the one here and there are small so it really only equals one breakfast but they dont know that lol. If he is having a bunch of drops I will stay with him and feed him so he doesnt make a mess of himself. This both makes me smile and cry all at once. Its hard to feed him at 13 and not get sad but he is so silly and cute when I do he makes me smile. Time to hit post and get myself in gear cause life is such......

Tuesday, March 29, 2011

Life is such

I started this blog years ago. I forgot about it. I started it as a place I could come to and hide who I am. I am done with that. No secret identities I am who I am. I am a wife for almost 14 years now and a mother for almost 13 years now. I have come a long way in the past couple of years and still have a ways to go. Which I don't mind always growing, changing and bettering myself never to be stagnant is my goal.

Now onto what most of my blogs will be about my kids. My boys are 12 yo twins they are high functioning autistic and epileptic. There is other stuff in there too but those are the major things. Q as he likes to be called has 3 types of seizures absence, drops and grand mals. None of them are control despite countless medications. Then there is Bug he only has absence seizures. My daughter Ri was Dxed with type one diabetes in 12/09 she was my "normal" child up until then and that took the life out of me for a while. It was very hard to adjust to having three kids with conditions that cant be cured just treated. At the time of Ri's dx Q still only had the absence seizures. The Gm's started about a month after her dx. Then the drops I believe were during the summer. So I didnt have time t adjust to one thing when another started.

I love my kids and wouldnt trade them for anything in the world. It gets hard sometimes tho. I need to vent and cry and whine here. I need to get the heartache out so it doesnt become toxic within me. I can not afford to hang onto it. I need to get it out and ride the wave back to shore instead of letting the waves push me under and drag me out to sea. This blog will go from heart breaking to hysterical and more than likely all in one post. Its all good tho cause such is life....