My day

7:30am-Got up
7:45-Took Madison to school
8:00-Gage up, breakfast, got ready, got Gage ready
8:30-Took Gage to school
8:45-Becky calls and Autumn is running fever...call dr.
9:15-Take Autumn to the dr.--she has an ear infection
10:00-Go to get paper notarized
10:30-Meet mom to pick up paperwork for CDS
11:00-Go to Staples and Petsmart
11:30-Pick up Gage from school
11:45-Ate lunch (forgot to feed Gage though..he's never hungry anyways)
12:00pm-Faxed all 24 sheets to CDS company...made copies of all documents
1:00-Picked up Autumn meds, went to post office to mail documents
2:30-Started laundry (James helped)...made phone calls to nursing agency, DME company, and Medicaid
3:15-Picked up Madison from school
3:30-More laundry and not sure what else I really did during this time..I guess wasted time
5:00-Made dinner
5:30-Ate (remembered to feed Gage this time)
6:00-Balanced checkbook, paid bills, got ALL the forms and checks filled out for Gage's school fundraiser, pictures, gymnastics, book club, Angel food ministry
8:00-Laundry and boiled water because Autumn is out of sterile water for her heater tonight.
8:30-Got Gage ready for bed
9:00-Tired so decided to update my blog instead of being productive
Still to come: dishes and bath...house cleaning will have to wait until tomorrow.

So, I thought once Gage started school I would get 3 mornings of getting my house all cleaned and organized but that has not happened yet. It seems there is always something to be done with Autumn's medical stuff or errands to run. Tomorrow will be a more calm day with me hopefully finishing laundry and cleaning my house and we just have speech therapy and jsut a couple of errands to run. Friday will be ANOTHER hectic day....James will have to take my car to get the oil changed...I have to go to Madison's school and do PTA stuff and Autumn has to get her flu shot and trying to pick up kids in between. This weekend will be spent packing for our Dallas trip next week...I'm trying to get so much done this week since I won't be around next week to do it.

All this to say that I am SO excited and blessed that my mom is officially now my employee and can help me out with so much around here and I can pay her and not feel guilty that she's doing it. ;) God always knows when I am getting overwhelmed and just can't ever catch up and sends me angels to help. He did this with my day nurse back in June and now with my mom. We also have a new night nurse starting on Friday as well just to fill in the days the regular night nurse can not work.

Be praying for Autumn...her ear infection did not seem too bad but she's been running non-stop fever since 2:00pm today and alternating Tylenol and Motrin just has not been able to get it completely gone...as of now she's at 100.0 so hopefully it will go away soon.

Good night to all and moms I just want to say whether you are a stay-at-home mom or work outside of the home mom....a married or single mom....a special needs mom or a mom to perfectly healthy kids....YOU ARE AWESOME!!!! My day is just a typical day of every mom out there and just remember you are doing God's work and you were made special.

Autumn's 1st Birthday Party

Autumn had a great first birthday party even though many people were not able to make it. I was sad that not everyone was able to come but so very thankful for the ones who did to make this first birthday a very special one for Autumn. It meant so much to me.

Here's Autumn's cake

Happy Birthday to YOU!!!

She drove right into her cake

and had cake ALL over her face, arms, and hair.

She got LOTS of gifts but did not feel like downloading all the pictures (some are on facebook though). There was a big jumper with a slide that kept all the other kids busy and the boys into trouble. The hotdogs were yummy! It was a great relaxing time to spend with family and close friends. Thanks everyone for wishing Autumn a special first birthday and for all the presents!!

Two posts in one

We did not do anything special for Autumn's birthday because we are having her a party this weekend. She got to go to the dr. and get her 12 month shots...she slept through them and did not feel a thing. Most moms would think this is great but I would so love to hear her cry for shots and know she could feel her legs...the things we do not know to be thankful for until we are faced with the other side. ;) She did get to wear her cute birthday shirt though. She also got 2 birthday balloons from her Nana and her BFF, Lily. They came to visit to bring Autumn a mini pumpkin decorated just for her and a balloon. Below is a picture of Lily, Becky (Gea), and Autumn. Becky is Autumn's day nurse and Lily's grandma. I will have lots of pictures to post Sunday of her Saturday party.

Today was one of those days for me where I just got so overwhelmed dealing with medical crap that I had to just let it out in tears of frustration. First, I still can't get anyone to call me back about getting on the CDS program for our MDCP. We have not been using out MDCP because our nursing agency still has not gotten it set up so I've been trying to set it up where I can hire my own people and pay them. So, another month of not using MDCP could mean we lose our Medicaid so I'm really stressing about getting this done. Next, James insurance company is changing their policies so the option we really need for our family will cost us about $675 a month which means an extra $350 would be taken out of our paycheck each month. Um...not possible for us since right now we are able to just make ends meet month to month. So, we have to do the next option down which does not have co-pays so anytime we use a dr. we will have to pay the full amount until our deductable is met and then the 20%...well, for a family of five this is a big deal for us. They have a free clinic we can use but you have to see the PA's and I want my kids seen by a peditrician and the clinic is going to be crowded with all of the City of Midland employees using the same 2 doctors. It just frustrates me that I send my husband out risking his life every night for this city and then they want to repay him by making insurance outragiously expensive for his family. Having a special needs child we are already in debt medically and if one bad thing happens to any of us it will be something we will not be able to recover from financially. So, this is where I had to calm down and remember God is in control and I just need to trust Him through all of this. Thirdly, James called our DME company about the status of the equipment we have been waiting on. Thankfully our pulse ox and vent stand finally came in. Whoo Hoo...after waiting over 6 months it's about time. Well, James asked about our back-up vent and the guy said he has not heard back from our insurance or Medicaid about approval yet. James wanted to confirm though that they did have a vent waiting in the office in case this one failed and when the approval came in. Um no...they do NOT have one. I was told they had one but apparently another patient needed it and so they gave it to them and have not gotten another one in. James asked about what would happen if the vent broke tonight and the guy responded, "Let's just hope it doesn't" Are you kidding me??? Yeah, let's hope it doesn't because my daughter would die...we can only bag her for so long before needing to get her on a ventilator. Of course we would call an ambulance to come get her and take her to the ER but why go through the trouble or expense of all that when she could have a vent right next to her to hook her up to. I'm always nervous also if something would happen on our drive to Dallas and no other vent and not near a city. I'm sick of putting my daughter's life at risk because of medical crap we have to deal with to get the things she needs. So, needless to say today was just one of those days where I'm overwhelmed with the healthcare system in our country. This evening though we took Autumn for her 1 year old photo shoot so it was nice to not think about medical stuff and just have fun getting pictures made (even though Autumn had not had an afternoon nap and did not want to cooperate very well). We did take her off the vent for some pictures and she did about 5 minutes vent free before desatting...whoo hoo...which is good since she does not have a back up vent. haha..okay bad joke. So, tomorrow Nanny and PaPa are coming to visit so it will be a great weekend of spending time with family...I just LOVE when all of my family gets together.

Happy 1st Birthday Autumn!!!

Yes, the time has come that my baby turns ONE!!!

We have come a LONG way from this little 5lb,15oz.; 18 inch baby that spent the first 4 months enduring surgeries and living her life in the hospital to....

this HAPPY, 18lbs.6oz; 25 inch bright-eyed, inspirational little girl!!!
(I took her vent off just long enough to get a tube free picture)

I can not believe it was only a short year ago this time last year when we were anxiously waiting for Autumn's arrival. We were excited and fearful of what was to come. Things did not happen the way we expected or hoped for but looking at Autumn today I can truly say, "She's worth every minute of it"!!! We still have a long road ahead of us but this little girl has taught me so much in this past year that I never learned in my other 29 years of life and could only learn it from her. She's such a joy to know and just to think she MY daughter. (and James too)

Happy Birthday my beautiful Princess!!!

By the way, Autumn did not get her first tooth for her first birthday like I was wishing for...maybe though she will have a mouth full by her second??? lol

Home again

Our trip home went well. I'm exhausted though and nurse free for 3 nights so I am going to be so ready for my nurses on Monday. ;) I've come to the conclusion that Autumn does much better in the Dallas humidity than the West Texas dryness. I guess I need to go get her an humidifier to use in her room at night and see if that helps. She hardly ever desats every time we are in Dallas but as soon as we get past Abilene the desats start coming again. Last night she had to be on a 28 breathrate and 1/2 liter of oxygen and today she's had extra secretions than normal and desatting ALL day. I guess this is just another reason why we should move away. There is also so many SB activities we could attend in the Dallas area as well which would be good for Autumn as she grows older.

Moving has been a heavy weight on my heart because I really do not want to leave my parents or nurses here. I do not want to go through the nurse search again and know I will need some type of help when we move. I think though this is something that needs to be done even though I go back and forth with the decision. I also know as Autumn gets older traveling will get harder on her and once she gets to school we can't keep having her miss weeks for dr. appts. So, I have decided to do some research and see what we need to do and where we want to move to. It looks as though Rowlett may the best option for us. Even though James does not want to do police work anymore he will have to to get us moved there and stable and then he can start searching for other types of jobs. We can go ahead and put our house for sale and then move in with my parents until the school year is up so the kids will not be pulled out in the middle of the year. After the new year, James can move to Rowlett and we can buy a house and get it all ready before me and the kids move there. Our family was apart for 5 months when Autumn was in the hospital so I know we can handle another 5 months. This will give me time to get nursing and a DME equipment in order and transfer her MDCP over. So, that is kind of out plan as of right now but we will see what actually happens...God shows us differently at times. ;) I've also been researching schools for the kids and in Garland ISD no matter where you live you can choose which school your child attends but you have to put in your choice by January for the next school year. I also hear they have really good special needs classes so that is another plus for Autumn. ;) We are continuing to pray about it all and see what happens.

Well, Madison stepped on a rusty nail this evening. She's my DRAMA queen so anytime she's injured it's like she lost a limb or something. I was on the phone in Autumn's room and Gage came in telling me sissy wants to show me something...so I told him hold on and a couple of mins later went into the living room and saw Madison sitting on the couch with a nail sticking out of her foot and crying a little. She didn't start crying really hard until she saw me and knew we would have to pull it out. So, after about 5 mins of her preparing herself..she finally let me pull it out while she screamed into a pillow. It was bleeding pretty good and so we got it cleaned up and then came the news that she will need a tetnus shot. Oh my goodness...you would think you just told her her favorite pet had died or something. She went on and on bawling and crying. We finally had to get stern with her to calm down and not make such a big deal about it. I took her to the ER and they said she could actually wait until Monday morning to get one so home we came. I guess that means that Monday morning I get to start my morning by re-living the drama all over again. I'm so thankful God did not choose for Madison to have SB because I'm not sure she could handle the calling as well as Autumn has.

SB/Neurosugery Clinics

Not much to talk about with her appts. today. I thought we'd get a lot of info during our SB clinic since Autumn is almost a year (5 days left). Well, her SB dr. was not even there and we saw his new partner. So, we talked about her constipation issues. They are going to try adding more water to her diet to hopefully get things moving for her. If that does not work they went ahead and wrote me 2 prescriptions. One is for Senna, a medicine to help her with her bowel movements and then another for enemas. Most SB kids get on a bowel program when it's time to potty train where they are given enemas at the same time each day so they can have planned bowel movements and be able to wear underwear like their peers. So, we are going to try and see what is going to work for Autumn since every SB child is different. They are not ready for her to try a stander because they feel she needs more trunk and head control. My PT wants to start her on one soon so we may just go ahead and see if she can do it or not. If not, when Autumn goes back to SB clinic at 18 months they will have a stander for her. That pretty much sums up that appt. She did have to get blood taken but my super star baby did not even cry.

So, we loaded her up, got lunch, and went back to my brother's house for about an hour and then left again for our neurosurgery appt. That appt was literally 5 mins long. The dr. walked in said her MRI looked fine, measured her head, asked a few questions, and then felt her shunt and fontonelle. I asked how her Chiari looked on the MRI and he said it looks like the decompression did open up some space for her fluid to flow and things looked good. Then he said we would not need to see him again for a year and we will get a CT scan in a year. I guess though short visits are good ones because it means everything is all good. I just hate that we travel 6 hours one way and take up 3 days time for appts. that could really be done over the phone. ;) I guess we do what we have to do though for our little princess.

My brother and I worked on Autumn's 1st year video and it looks really good so far. I also picked up Autumn's birthday dress and it is ADORABLE!!! I can't wait to be able to post pictures. Autumn has been doing great again with her stats in the day and night so next week I may have to move her settings down a little and see what a little push will do. ;) I did take some pictures in her birthday outfit today and would unhook her vent from her trach because I wanted pictures without tubes and she did not desat one time....she was even vent free for a couple of minutes so that made me happy. OH....I forgot Autumn rolled from her back to her belly for the first time this morning!! Every new little step is a rejoice party for us...I was proud of her. Well, we head home in the morning and I will get a 2 week break and then on the road again. *sigh*

Fair Fun

This evening we took the kids to the Permian Basin Fair. I've always loved going to the fair and so I get excited every year to take the kids. We hesitate at times though about taking Autumn anywhere because of all the stares we get but I've learned if I just do not really look at people I won't notice them staring at us. So far though we've only had good comments from strangers so that helps. They are always able to look past her equipment and see what a BEAUTIFUL baby she is. Some people just want to touch and squeeze her chubby legs and some do ask us what's wrong with her which I would much rather people do then just stare. Here's a few photos to enjoy from our FUN FILLED night.Madison, James, and Gage on the farris wheel...rides make me sick so I was more than happy to be the one sitting with Autumn while everyone else rode. I took Gage around to riding the kiddie rides while James and Madison took on the big, nauseating rides. She was feeling a little queasy afterwards but they had a blast riding together. Autumn got attention from the carnival game guys and one stopped us to ask what was wrong with her and then gave her a shrek doll and then another one stopped us and gave her a big care bear doll. It was so sweet of them and showed me that there are perks to having a trach and vent attached to you at times. ;)
I remember when Madison was this age and got to ride the ponies....maybe he will be our future jockey. He loved riding them. Autumn fell asleep so she missed all the animals. My favorite part of the fair is the petting zoo so I took Madison and Gage in. Gage LOVED all the animals and the overly aggressive goats did not bother him at all. Madison was scared of the goats..don't know whose kid she is? I took lots of pictures but did not feel like posting them all on the blog.

Madison wanted me to take a end of the day picture of them. Gage was not really mad...he just thinks it's funny to make faces in pictures...Autumn was interested is trying to sit all the way up..and Madison just looks so pretty. We had a great evening with no complaining...well, Gage did get mad once because he wanted to ride the farris wheel again towards the end and we said no...BUT other than that everyone stayed happy and we just had a great time.