Our Christmas

We had a very blessed Christmas this year. Madison's Christmas started the weekend before going to Lubbock to spend time with her dad and his mom's side of the family. On Christmas Eve morning Madison and Gage went with Madison's grandma Roxane to celebrate Christmas with her husband's family. I love how they have always accepted Gage as part as their family just as much as James' side of the family has accepted Madison. It just makes it so much easier on the kids when we all still love each other and get along and all the families treat the kids as their own on every side. I hope my kids one day understand how blessed they are to have such loving families all around and never take that for granted. Anyways, back to Christmas get togethers. On Christmas Eve night we got together at my mom's house and this year her entire side of the family was able to make it.

We took a pictures of everyone...here they are: The picture is of my mother and her brothers and sisters with their spouses, their children, and their grandchildren. We have grown so much! I hope all of our children will continue on the tradition of family get togethers as they get older as well. There is nothing like the support of a large family.

We did not get home until about 11:30pm that evening and by the time everyone got settled and in bed it was about 1am. 7am came very early on Christmas morning. It was just us girls who woke up first so I made us a big breakfast and then when Gage woke up it was time to get daddy up and open presents. I was so excited to have our first Christmas home together as a family of 5 but when you have a special needs child there are some things you have to get done first before being able to dig into Christmas. We got Autumn and her equipment moved into the livingroom and right after she opened her first present she started vomiting. This is what happens when you have a child with reflux and you feed her and then try to sit her up and move her around before her meds kick in. So, after every gift she opened we would have to stop and clean her up and suction her. We finally gave up on her opening presents until she felt better but the other kids were really good about being patient while we took care of Autumn in between them opening gifts. It was not the first Christmas I imagined but it still turned out good. After presents we got ready to go to my grandparents house on my dad's side. James had to work Christmas Day so I was left alone to load up all the kids and gifts and head to Odessa. We had a wonderful time at my grandparents. I had to go to a family visitation since my best friends grandmother died earlier in the week and since I had no nurse my mother and sister-in-law went with me so they could sit in the car with Autumn while I went to the viewing. No one besides James and I and our 3 nurses are trained on Autumn so when we don't have a nurse we can not be more than a run away from Autumn in case of an emergency. She did go into the 50's while I was away but they put her oxygen up and she came back up so I was glad they handled it well. Once we move to Dallas my sister-in-law will get trained on taking care of Autumn and that makes me feel so much more prepared in case something did ever happen to both James and I and there would be a family member who could care for her.

Christmas night Autumn woke up for 2 hours in the middle of the night so I was EXHAUSTED the day after Christmas. Me, mom, and my sister-in-law went early morning shopping while I had a nurse for a few hours. That afternoon we did Christmas with my parents and brother's family. We just let the kids play all day and relaxed some. I could hardly keep my eyes open so I was so happy to see my night nurse walk through the door that evening. ;) I forget how much work Autumn is when we go without nurses for a couple of days. I don't plan to have a day nurse once we move to Dallas except for my sister-in-law helping out for about 5 hours a day during the week so that is going to be a hard adjustment. I've done it before but I've gotten spoiled over the last several months having so much help. Even though this past week was very tiring I love being around family and just soaking up the memories. Sometimes I sit in silence when all my kids are in bed and wonder why God has blessed me so much. I don't have a perfect life but I would not trade my life with anyone else I know....I hope you feel the same way about your life and family.

Autumn update: Just wanted to brag about the new things Autumn has learned lately. She can point to her ear, hair, and hiney. ;) She can push herself to a sitting position while laying in her bed. Today during PT (which I missed) she army crawled a little to get a toy. Yea Autumn!!!

A dead spider

I should be blogging about our Christmas but just have not felt like taking the time to sit down and upload pictures and tell of our events. (I will though once I feel like it)

Instead I decided to tell what my son is doing. For Christmas he got Guitar Hero World Tour, a play laptop, lots of board games, Wii games, a DS with games, puzzles, golf club, remote control tarantula, basketball goal, and more. So, what is he playing with tonight.....a DEAD spider he found in the livingroom. He even gave his sissy his remote control tarantula because he would rather have the dead spider. He told the spider he loves it and wonders how it died. Tonight he's sleeping with it and singing to it. Dang, if I would of known the fun of a dead spider I could of saved a lot of money this Christmas. ;) Sometimes I wonder about that boy.

2009 Review

Looking back over the past year...this is how busy our little Autumn and we have been.

Autumn has had 50 therapy sessions of speech, physical and occupational therapy combined.

She has had 35-40 different doctor appts. So, that makes us having an average of some type of appt/therapy every 4 days throughout the year.

She has been to the ER three times this year and one of those being a time we seriously thought we were going to lose her.

She has only had 2 surgeries this year which is great compared to the 6 she had last year.

We have driven to Dallas 10 times this year so that is a total of 6,500 miles. We could of gone from New York to California, back to New York, and then half way to Cali again. I would of much rather see the sites of that trip than the ugly scenery from Midland to Dallas 20 times! :)

We have spent out of pocket (including having both insurance and Medicaid) a total of $6,373.17 on medical bills and related expenses like parking and gas. That is even with the help of funds from Medicaid to help with gas for trips. Thank goodness for all the donations and funds we recieved to help pay for those expenses.

No telling how much medical supplies we have been through or the hundreds of nursing hours we have had as well....and the numerous phone calls I've made over the past year for medical issues pertaining to Autumn.

Autumn has become my new full-time job. Even though I get sick and tired of all the appts, phone calls, and traveling....the smiles and accomplishments I receive from Autumn completely outnumbers any of the stuff I have listed above. I could not imagine how much more empty my life would of felt without her being a part of our family. She is very crucial now to our family structure and she has made us all so much more closer, blessed, inspired, and appreciative of each other. Thank you Lord for giving us another year of blessings with our little Autumn and praying for more year after year. I'm so blessed for my 3 beautiful children!

Early Present

Last night we let Gage open an early present since Madison was in Lubbock doing Christmas with her daddy's side of the family. I did not think though we would get such a happy reaction...can't wait until Christmas morning to see the joy on all the kids faces!!!

Christmas Time

I just wanted to mention how thankful I am for this time of year. Most people I've noticed are extremely busy this time of year with lots of shopping and parties to go to. I have to say this is probably our first month since we've been home in January where I am not super busy. It's been such a relaxing time for me. James and I went shopping one evening and got the majority of the kids gifts and then on a Sunday afternoon Madison and I managed to get the rest. The house has remained clean since our house is on the market so that is always a blessing. The greatest part is that Autumn's schedule has slowed down this month. She had most of her therapy sessions the first 2 weeks of December and only one dr. appt today for her shots. So, I've actually been bored around here and trying to find something to do. I never thought I'd be able to say that again. It's nice to just sit and play games with the kids or waste time on the computer. So, I am trying to soak in this month as much as possible because I know once January hits we will be back into fast mode again and chaos. I encourage all of you to just take a day to stay in your PJ's and do nothing but love on your family and relax! Merry Christmas!

Week One

Our house has been on the market for a week now. We had an Open House with no shows...it's winter, it was later in the day, and during the Cowboys game so we figured there would not be many people but was wanting at least one person. ;) We have had to show the house twice this week. Okay, I already hate living the life of trying to sale my house. It's good because it forces me to keep my house clean but I hate having to stop everything when someone calls, make the house perfect looking, send James and the kids away, and then sit until the people show up, walk around for a few minutes and then leave. ;) The first time they called the kids and I were in the middle of making chocolate pretzel sticks and I did not get a chance to eat lunch until after 1pm. The second time I was not even dressed for the day and then Autumn throws up in the middle of trying to clean. This is stressful for me since I am a person who lives a life on a schedule and I hate when my schedule is messed up. ;) We are not stressing about the actual house selling (just yet) since James still does not have a job yet and the less we have to live with my parents the better. ;) (No cable or internet is going to be a challenge for us).

Everything else has been fine around here. I'm trying to get Autumn on a new schedule and she's not cooperating. I wanted her to take long afternoon nap since she fights us to go to sleep around 10:30-11am and only sleeps for about an hour and that's all she sleeps during the day. I figure if we keep her up until about 12 or 1pm then just maybe she would sleep over an hour each day. Um no, instead she's been going back to sleep at 9am every morning and sleeping about an hour. What?! She goes to sleep at night around 8pm and wakes up about 6am so I have no clue why she does not take longer naps. She's just like her big brother. I also want us to be more consistent with her therapies and getting her weaned off the vent. It's so hard though because some days Autumn does great off the vent and others you can't take her off for more than a few minutes. Some days she will cooperate with therapy and others she won't do anything and desats the whole time. So, as much as I try to be on a schedule and consistent, she has other plans.

She's been doing so much lately with copying us and learning so many new things. She's learning some signs and how to do a few things to get our attention and get her way. ;) It's exciting to see her doing normal baby things as other kids her age.

Autumn videos

Gage and Autumn playing.

This is how you know you really are a bad singer...lol

Autumn eating dinner

Gage the Entertainer

This is some of the great entertainment I get during the day...glad he's around to make me laugh.

This one really makes me laugh everytime I watch it.

I just love my silly son.

I had about 4 more of these videos but they take too long to load but you get the idea. What is really funny is watching Gage watch himself on video...he thinks he's hilarious as well. Show off!

For Sale

Yes, we signed the papers to put our house on the market today. Excited and Scared! Excited because I can't wait to house shop and to know once we are moved we do not have to make that dreadful 6 hour drive anymore. Scared because James does not have a job there yet and just the not knowing of what's in our near future. Not sure how long we will end up living with my parents, not sure about getting new nursing, therapists, and DME company. I know this move is a MUST and so I have no doubts about it but I do worry about not having my mom nearby to call up anytime I need extra help. It's a big step but I know in my heart it is what is best for Autumn.

Speaking of little Miss Autumn....she woke up at 3:45am and stayed up until 11:00am this morning. Sheesh! James changed her diaper before going to bed and that woke her up. So, I got up with her and then James said he would take over. Our night nurse had called in. So, at 5am I took over and after 30 mins of trying everything to get her back asleep I figured it's not worth it. I turned on cartoons for her and went to bed. When I got up at 7:30 she was still wide awake just watching her cartoons and she stayed awake ALL morning. She took a 45 min nap, had OT (while off her vent), and still did not go back to sleep until 7:45pm. She did have a low grade fever but acted fine so I'm praying it does not turn into anything more. She's such a mess. She always wants to be up and is so nosey.

I'm done with my Christmas shopping and excited about that since I HATE to shop. So, my next few weeks will be spent just keeping the house super clean for showing and getting geared up for the holiday parties. Later I will post a few videos of Gage and what he likes to do to entertain me during the day. ;)

Snow Day/No School

Today we had a snow day and school was cancelled. Yes, we only had about 1-2 inches but since we only see snow once a year or every two years we have to take advantage and cancel school and PLAY!!! I made sure we took Autumn out even though it was for less than 2 mins but we will be moving to Dallas soon and this may be our last chance to see snow for years. My poor niece has never experienced playing in the snow and she's 8!!! So, I want my kids to remember these rare days we have. Gage making snowballs on the trampoline
Madison and her friend Eden (who lives a few houses down). They spent all morning together playing with the other kids on the street making snowmen and having a snowball fight. Now a few of the girls are having a pajama party at Eden's house watching Christmas movies and drinking hot chocolate.

Here's a video of Autumn first time seeing and touching snow. I think she enjoyed it even though it was short-lived.

Counting my blessings daily

These past 2 weeks have been sad in my world on my SB mom and trach mom groups. There has been 3 losses of kids...1 with a trach and 2 with spina bifida. It reminds me quickly that even though I don't see the miracles I want with Autumn daily that each day I have with her really is a miracle. She's been through so much and I forget sometimes that we could of lost her during her 8 surgeries or during the dozens of times she has stopped breathing on us. For her to endure all she's been through and to be as healthy as she's been through it all is such a miracle in itself. God has had His hand in every moment in her life and He continues to keep blessing us everyday with her. I keep wanting the miracles of her to have no vent, no trach, or to be able to crawl, stand, walk and talk but really I will take the miracle God gives me each day that I get to see her smile everyday and hug and love on her. My heart aches for the families that do not get that privilage anymore but because of those families it shows me that they would give anything to be going through what I deal with each and everyday with drs., medications, treatments, therapies, and so on and I need to be more appreciative or what I do have and not what I do not have. These families have shown me strength and appreciation and they are in my prayers as they deal with their great loss but they now know they have little angels awaiting them in heaven.