Tuesday, December 21, 2010

Some December pics

Gage and Dean posing on the sled at Six Flags
(Yes, I need a new camera)
Gage, a reindeer, and Haley at Six Flags...this one was sitting all alone away from the others and we thought it was being lazy but now I see he has a red nose...it was Rudolph!
Gage and my cousin Robin...waiting to ride the Mini Mine Train
Gage and his teacher, Mrs. Ferguson at his school Christmas party
Autumn and Madison at Madison's school Christmas party.
Autumn did not like the 6th grade hall
Autumn at her ECI Christmas party...she thinks if she closes her eyes we will all go away and leave her alone! She was NOT happy!This made her even more mad!
Not sure if this video will work or not.
It's of my cousin Steph and Gage going down the snowhill at Six Flags.

Sunday, December 19, 2010

Busy as always

I feel like BUSY has become my new normal. I can not believe it's only been a week since my last update... I feel like 2 weeks have gone by. Let's see, this is what I've done this week.

Monday Autumn had her ECI Christmas party which she HATED!!! She's become a very unsocial child and does not like strangers or lots of people around. So, I held her the entire time has she clung for dear life to my shirt. She cried meeting Santa and closed her eyes when I tried to get her to participate in the activities. She thinks if she closes her eyes no one can see her anymore and she will not have to do anything she does not want to. She can be frustrating at times. ;) That day I also read to Gage's class, PT for Autumn, and gymnastics for Gage. I also managed to hire a new nursing agency that day to get things going on getting our nurses hired and us approved through insurance/Medicaid.

Tuesday since I had no nursing just yet....my SIL and I loaded up Autumn for a fun day of shopping. I also decided to change up Autumn's feeding schedule where she gets most of her feeds overnight and just a few ounces during the day to hopefully prevent gagging/vomiting since she never does it while sleeping. It made a huge difference that day and Autumn did AWESOME on our shopping trip. She was good the entire time and only had to be suctioned twice and had not one gagging episode. I was so thrilled! My evening ended with attending Madison's last Christmas choir concert.

Wednesday the owner of our new nursing agency came over to do all of our paperwork. It took about 4 hours but so far I LOVE them. It's a small company and very family oriented. They even have a support group going for trach/vent moms twice a month. She was very personable and open about her life and the company. I was very pleased. They were also able to get one of my night nurses started back that evening and she even gets paid more so it worked out better for everyone.

Thursday was spent doing my last minute shopping for Christmas and groceries. I also made the kids teachers oreo balls and stayed up late to finish cleaning my house for my company coming over.

Friday was busy, busy. Started with speech therapy for Autumn. I then loaded her up and took her with me to the kids Christmas parties at school. I had lots to bring so I had her stroller fully loaded. She did okay at first but then started her crying and wanting to be held...she does this at home now when I sit her down so I rarely can get anything done anymore if I do not have an attendant or nurse around. We hung out with Madison and the 6th graders for a short time until it was time to go to Gage's party. She finally let me put her back in her stroller while I helped set up Gage's party. It did not last too long though and she was wanting back in my arms. By this time, I was hot and my arm felt like it was about to fall off. We made it through 2 hours of partying and then I took the kids home early for school for their 19 day break. Yes, 19 days! The day ended by my cousins, aunt, and uncles coming to visit (they are from California, Houston, and Odessa) and we all went to dinner for my 3rd cousins 13th birthday party. I also let my house be the host home for her slumber party. Since there was scheduling issues with the party only 3 girls were there so it made it an easy one. ;)

Saturday I took Madison to the airport to fly to Lubbock to have Christmas at her great-grandmothers and then to head off to San Antonio with her dad. She beat me to Lubbock before I could make the drive back to Rockwall from the airport...traffic is horrible during Christmas time. I was able to get a nap in that afternoon and we skipped church since Autumn has been having a cough off and on this past week...we also discovered a groove her trach tube has made at her stoma (the neck hole) and it has caused some yellowing and bleeding which I will have to get checked out on Monday. James, Gage, and I spent some family time playing Uno...over and over again. I think I had eaten too many oreo balls though that day and ended up sick to my stomach all night.

Sunday (today) I cleaned half the house...AGAIN...and played about 100 games of Uno with Gage. He cheats but still loses....yes, I am one of those mom's who will not let my kids win on purpose! I got bills paid, laundry done and then took Gage to Six Flags since he missed going the other weekend. It was SO packed that I had to park in the last parking lot...we still had a great time until it was time to leave and I still had not gotten him any cotton candy and so in 10 minutes I walked through the ENTIRE park seeing if I could find one vendor still open selling some and couldn't. He was one mad child and had a bad attitude. I hate when good times end badly. :( I was able to have a 30 minutes talk with Madison on the way home so that was good. ;) So, here is it after midnight and it's time for me to get to bed. Tomorrow the agenda is to call the dr. about Autumn, maybe clean my SIL's house (still undecided), pack for our trip, clean the upstairs, Autumn has PT, Gage has gymnastics, and then suppose to have dinner with my growth group from church. We leave Tuesday morning for Christmas in Austin with James' family, home on the 23rd, and then off again on the 26th for Midland to visit my family for Christmas and then back on the 31st. Maybe things will slow down in January? Will post pictures this week if I get a chance but no promises. ;)

Saturday, December 11, 2010

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. ;)

Saturday, December 4, 2010

Thanksgiving Pictures

I use to get really annoyed with blog slackers and now I have become one...so sorry! I guess my new year's resolution will be to blog again...it's been so long since I uploaded pictures I forgot I needed to do them in the reverse order so once again pictures are out of order and the story will go backwards. ;)

Madison with her slinky hair...Thanksgiving we celebrated 2 days after Thanksgiving with my parents, brother's family, and the Graham/Wheeler family. I did not take many pictures (knew my SIL was taking some) so I did not get much. Sorry.
Wearing our SB Awareness Shirts...we all look like we just woke up in this picture...not our best!

Autumn cuddling with my dad
On Thanksgiving Day we were in Leander with James' family.
Here is Aunt Shelley and Autumn hanging out together on the floor.
Gage playing catch with Papa and Garrett
Garrett and Gage...Gage WAS a UT fan until Garrett convinced him to be a traitor...daddy was happy that he was converted since he's been trying to make him an Aggie fan for years! We will get him back with the right team though.
PaPa's turn to play on the floor
Autumn in her Thanksgiving shirt. ;) So true!
Gage at his kindergarten program.
I had a great picture of Nanny and Autumn but for some reason it did not upload...:( Will have to try again later. Gage is calling me to bed...he's running fever and needs mommy. ;)











Thursday, December 2, 2010

Sleep Study Results

We FINALLY got back the results from Autumn's sleep study (they can get me the $3,000 bill in a week but the results take a month). Well, I was disappointed. Apparently, she was desatting into the high 80's in her deep sleep which James never saw and we never see when she's at home either. *sigh* Anyways, they moved her pressure control from 18 to 16 and her breathrate from 20 to 16 while she's sleeping. At least we were able to move the settings down some but not as much as I had hoped for.

Our vomiting saga still continues. I think it just may be something we learn to live with. I'm really tired of trying to figure it out and nothing seems to work. Right now we have her off her prevacid and on her zantac only which has shown us some improvements. She's also on 5 feeds a day instead of 4 so she gets smaller amounts at each feed. So, that means that for 5 hours everyday all I'm doing in feeding Autumn. She can only give her 2 ounces at a time and have to wait 15-20 minutes in between. We've tried putting her on a feeding pump but she REALLY vomits with continous feeds. Honestly, I think I've tried just about everything. My last attempt may be only feeding her 12 ounces during the day and then putting her on the pump at night for the rest of her feed...if she's sleeping she can usually tolerate the pump but I just really hate only giving her 12 ounces during the day unless she starts taking something by mouth as well.

I will try to post some pictures from Thanksgiving when I get a chance. I am so busy these days I'm rarely even on the computer but will try to find some time soon.