7 day update

I'm proud that it's only been a week since I updated last. This has been a LONG week though.



Thursday(2nd): Met with the school counselor that morning about Gage. We took a survey to see if he may be ADHD. The results showed that it's a high possibility he is but they do not diagnose so said I may want to make an appt. with his dr. to talk further about it. His highest scores were in the hyperactivity/impulsitivity area and then the attention area was 2nd highest. ;) It's been a rough year with him so far and I can understand why now if ADHD is the case. He's changed a lot since school has started...I think it's so hard for him to calm himself and stay focused at school that once he gets home it's all released. Gage is a video game junky and great at guitar hero and the counselor explained that games are so fast paced that it's just like how his mind is working so it ends up being a calming factor. Well, since Gage has started school he does not play the Wii as much and we have seen the difference on how much more hyper active he is and can tell now that it actually does calm him when he plays. He also chews on everything and fidgets when sitting(another sign of ADHD). She said to let him chew gum or squeeze a stress ball/putty while doing his work and it can calm his mind down to stay focused on his work. He also talks non-stop so he keeps me busy. ;) I'm just glad that we are researching this now and if he does have ADHD then we can get help for him now rather than him getting into trouble and finding out the reasons why later. After meeting with the counselor, I ran an errand then went back up to the school to volunteer stuffing the Thursday folders for the 6th grade teachers and had lunch with Gage. About an hour after I got home, the nurse called because Gage was not feeling well. Jen had already left so I loaded up Autumn and off I went to the school for the 3rd time that day. Gage was so excited to be leaving school early for the first time and did not appear to have a belly ache anymore.



Friday: Autumn got fitted for her wheelchair. As soon as they put her in the tiny thing she started rolling it across the floor. I was shocked! She only does circles, back & forth, or goes backwards in her stander so I was thinking we may have to do an electric chair. This chair though the wheels are much closer together that it's easier for her to do and her trunk is more supportive. The sad news is that it may take up to 6 months for it to come in. :( It was so exciting to see her be independant...it felt like seeing her take her first steps..both my SIL and I got teary eyed watching her. I can not wait until she gets it!



That evening Gage started running fever but said he felt fine.



Saturday: Stayed home most of the day. Gage was still running fever off and on and only complained of headaches when his fever went high but was still active and had a appetite. We skipped church and Madison and I went shopping for supplies for her science project.



Sunday: Gage woke up about 3am vomiting and high fever. He was a little tired the next day and fever was coming and going but still said he felt fine. Madison had a choir concert at Six Flags that evening and we had all planned on going to experience Holiday in the Park. James stayed home with Gage while I took Madison with my cousin and her daughter. We had a great time! It was different being there when it was freezing cold and they had hot chocolate and kennel corn...so yummy!



Monday: Kept Gage home from school and decided to take him to the dr. Turns out he had strep throat. Seriously, when my kids don't act sick they are and when they feel sick, they aren't. The dr. was suppose to call in his meds that evening but didn't and it took me calling the office several times the next morning to get them to call it in...I was so frustrated!



Tuesday: Gage had to stay home sick again. I got a little Christmas shopping done. When I got home my nursing company had made a few calls to my equipment company and dr. office which made me unhappy. I know they have to do their job and get orders for certain things (like major vent changes) but when they call to get confirmation on changes I have made on things that do not require the approval of a dr. it makes me angry. They do these things without even talking with me first about it and it underminds my authority has Autumn's mom and caregiver. Then they talk to someone who only knows about Autumn from a chart they are looking at and trust that person but not me. One time they even called her pediatrician to tell her she dosed Autumn wrong on her tylenol dosage (which they were wrong, not the dr). Every time they do this, they get the confirmation that whatever I have changed is fine. This is the 3rd nursing company I have been with and the only one who has to check up on every little change I make..the others just put "per mom's request" and that covers their liability.



Madison had another choir concert that evening.



Wednesday: I was still bothered by my nursing company so I called to talk to my case worker. I told him my frustrations and also talked to him about another issue where he wants my nurses doing a task daily that I do weekly because that is how I was taught in the hospital by my dr. and the way I've done it for 2 years now. He said it needs to be done daily and I told him there is not an order that says that so I only want it done weekly. He said you do not need orders for things like that but it's their policy to do it daily and not weekly. I told him that I'm going by how the hospital taught me and not what their policy says so to only do it weekly. He then said Ok, but I will need to get an order from Dr. G to only have it done weekly if that is how you want it done. I was like what? You just said you do not need orders for things like that so if a mom says to do it one way, that is how it should be done and he said no because their policy requests it be done daily. So, he only needs a dr. order for the things that I want done a certain way but not the things he wants done a certain way. I asked if parents have any rights then and he said yes, you an tell me how you want something and then we will get a order from the dr. approving it done that way. I told him that from now on I want to be notified and talked to before they call our providers about things and he told me that is not how things are run with their office and if I do not like it then I can just go find another nursing agency. I said ok I will and hung up. I swear, we have more say so in the hospital and with our drs. than in our own home with that nursing company. After I hung up I felt like a weight had been released but then started crying thinking about how much I was going to miss my nurses...well, 2 of the 3. ;) I texted our fav. nurse and let her know what had happened. She called and said she was so glad I fired them and had wanted me to for awhile but couldn't tell me to. She told me she loves our family and will apply with whatever company we decide to go with. I put a call into Dr. G's office but still waiting for a callback so I can see who they can recommend. James and I had planned to do our kids Christmas shopping that day so since I had fired nursing we got to take Autumn with us. ;) She had a good time...it may of taken us longer and we had to stop before we were done but it felt empowering to have her with us instead of sitting at home with a nurse. Even the schedule lady at the nursing company texted me to let me know she wanted to stay in touch and she was sorry about everything and recommended an agency to call.



Thursday: Madison had her 3rd choir performance of the week. I volunteered to be a chaperone...they sang at a mall and then had a few hours to shop afterwards. It was fun and I allowed Madison to get a couple of hermit crabs with her money...we've had them in the past but they have either died or gotten lost in the house. ;) Since we have no nurses I figure this is the perfect time to experiment changing Autumn's feeds...so we are doing overnight feeds and just a little during the day to see if this may eliminate the gagging/vomiting episodes.



Friday: I shopped ALL day. I'm not a shopper, I am getting better from being around my SIL but I like to get in and out and be done with it asap. So, from 9am-2pm I finished almost all of my shopping. I just have a couple of more gifts to be completely done. Our new night nurse came by the house and told us she wants to continue to work with Autumn and so to let her know if we go with another agency to let her know and she will go apply. I was not sure if I wanted to go through all the stress of another agency but if 2 of my nurses are willing to apply and stay with us then it may be worth giving another try. Right now I just need a break to care for Autumn without someone constantly questioning every little change I make. After the kids got home...my niece and nephew came over to stay the night. I took all 4 kids shopping. Every year the kids buy for needing kids so we went out to do that shopping and for Layla. We were gone for a little over an hour but it felt like 3 hours. Taking 2 boys into Claire's is not a good idea. The store is small and there are so many shiny things to touch and not much "wrestling" room. Not sure how many times I had to tell the boys to keep their hands to themselves and to be still or use their inside voices. Madison finished her shopping and then off to the toy store for Gage to pick out his gifts. Even though I explained to him 3 times before we went into the store that we were shopping for needing kids and not him...he still thought he was shopping for himself. After walking the store and looking and playing with almost everything..I was finally able to focus him on picking out 4 toys so we could go. Lastly, we went to the pet store for Layla and then off to home for dinner.



Saturday: Haley and Dean went home around noon...I wrapped half my Christmas gifts this morning. Autumn is at the stage where she wants to be held all the time. BUT when you hold her she does not sit still...she wants you to help her pull to a stand or she wants to crawl all over and around you and her new favorite thing is that she likes to put her hand down your shirt. No matter how many times you say no, she smiles and there goes her hand again. When I am able to put her down so I can get something done...if she needs to be suctioned and I have to go over to her she is crawling right into my lap again. This is where a wheelchair would be really nice so she can move herself around the house. This afternoon Madison and I constructed her 3D animal cell project and then Gage had a friend over to play. We ALL went to church this evening and then Madison went to stay the night with a friend. ;) One more week until Christmas break is out for the kids...I think my week's are going to remain busy until after my birthday in January. ;)