Church adventure

So, this summer we have not been going to church regularly and I've missed it so much! It's so hard when it's over 100 degrees outside and to get Autumn out of the house and load her in and out of the car in this heat. Plus she's such a distraction during church it's hard to pay attention and deal with her needs. It's also hard with James' working schedule...we go to Saturday evening church because he's too tired in the mornings to stay up for another couple of hours for church. We have not been able to make a life group after service because James would have to leave early to get ready for work. It's difficult to find a night nurse to work every Saturday and to be here by 5:30pm and stay until 8am the next morning. BUT, it's time to start going on a regular basis because we all need it and we've missed it so much. My SIL has agreed to give up 2 of her Saturday evenings with her family each month now to watch Autumn while we go to church and I think I have convinced one of my night nurses to pick up 1 Saturday shift each month to help us out. That leaves only 1 Saturday a month we would be taking Autumn with us.

Last night was our first time going to service and trying out a life group with Autumn. We have to take 2 separate cars since church is not over until 8:15 and James needs to get home, uniform on, and at work by 9:00pm. So, James leaves with Gage because if we parked near the kids building we would have to take a wheelchair lift to go down a few steps to use a ramp to do into the auditorium (the lift takes awhile and only one person at a time can use it). I had Autumn, Madison, and Jordyn going with me. Get to church while I get Autumn's HEAVY medical stroller out and loaded and then off we go. Get our seats and as soon as the music starts Autumn starts clapping away. She was making us clap and if we stopped she would want us to clap again (not all songs have a clapping rhythm to them). She did great during the singing and as soon as the preaching started she does this thing where she swings her arms back and forth and shakes her head like crazy. So, I took her out of her stroller thinking holding her would keep her more still and less of a distraction to those around us. She kept wanting to squeeze the skin under our chins, pinch my skin, and play with our ears. She would try to move from one side to the other and daddy and I took turns holding her to keep her hands busy and not be in pain from all the pinching going on. She didn't do much beeping though and went the entire service off the vent and needed no suctioning.

After the service it was time to send the girls to another building for their class and search for ours. Our church is HUGE...there is 5 different building and all with multiple levels. We took one elevator and found out we were in the wrong building (4 of them connect) so had to take that elevator down again. We then had to use the chair lift to get to the building we needed...there was a line. We found the correct elevator we needed and went up to the 3rd floor. We go into the class and it's for 30's married with kids. James and I though both felt like we were the youngest couple there. (later saw most had kinders though) Everyone was very welcoming though and greeted us and several different people introduced themselves to us and talked with us. I only had to leave once to suction Autumn. She kept trying to grab pages of my Bible and opening and closing the cover. If I took it away she would cry outloud (I did not mind since I love hearing her voice). Autumn's pulse ox machine now dies on us so now I have to make sure to watch her to know if she stops breathing on us. James had to leave at 8:00pm so I was left alone to have Autumn and pick up all the kids. I had NO clue which room James had dropped Gage off at and had never picked up Gage so did not know the procedure or who to give the pager back to. So, I waited for awhile for the elevator and went to the first level again. Found the info center and asked what to do...you have to get a check-out paper to take to the room. He was on the 2nd floor. So, here I go again. To the elevators and to the 2nd floor now. I'm also calling the girls and trying to direct them which building to walk to to meet me (I barely even knew where I was). Get to the 2nd floor wait in another line to pick up Gage. He wants to go down the BIG slide to the first floor but there is a line and no one to stand with him at the end (since I'm taking the elevator) so I tell him maybe next time. See the girls on the first floor as I'm going to the elevator so wave to them to go to the elevator and wait. Finally, got us all together and now have to figure out where I am to get back the the parking lot I parked in. Went out the doors thinking I can just walk around the building so I don't have to use the SLOW wheelchair lift. There is no sidewalk and it's dark out so only walk a little ways and then head inside the building again. (listening to Madison complain about her class this whole time) Walk inside until we get to the lift and try going outside and around again. Figure out where I am and go down a steep car ramp to the parking lot we are in. Get everyone loaded into the car. It took 30 mins from time the class was over until we were loaded in the car. Get home, have the girls help me unload, then start Autumn's nightly routine (we are an hour pass schedule now).....pajamas, trach care, meds, feed (which takes an hour), and neb treatment. I was so tired.

I was also the night nurse. Went to bed around 11pm. Autumn woke up at 1:30am (cried until I patted her back to sleep). Woke up again about 2:30am (same thing). I woke up about 4am (had a bad dream). Gage started sniffing his nose over and over around 4:30am (sleeps with me on the weekends when daddy is at work) Finally made him take some Zyrtec. Dosed back off and then Layla (our dog) starting barking in her sleep. Got her to stop. At some point heard a TV on....looked into the livingroom and the TV was off (thought I was losing my mind). Heard it again and figured out it was James home on his break upstairs watching TV (Madison had fallen asleep on the couch). Went back to bed. 5:30am, Autumn woke up again (patted back to sleep). 6:00am Autumn was WIDE awake. Turned on TV for her then I went back to sleep. James gets into bed about 7:30am (he gave Autumn her morning meds). I was going to sleep 30 more mins and next thing I knew it was 8:30am. Dang, already behind schedule for today. Even more behind taking time to blog instead of cleaning the house. ;)

Overall, even though it's exhausting and stressful to take Autumn to church...I'm glad we still went. Not sure if we will go to the same class again next week or try out a new one. James didn't really care for the way the teacher taught (he's really picky) ;) Hopefully though we will soon find the right class for us and make some new lifelong friends.

A Prayer

Heavenly Father,

Some mornings I just wake up and not sure what has hit me but I'm filled with sadness and frustration. You have blessed my life so abundantly so I always feel guilty when I'm hit with these feelings. I just want a normal life back. I want to be able to get up on a Saturday morning and go wherever I want with my kids. Whether that be garage saleing, shopping, swimming, the park, etc. I don't want to have to plan my life a month ahead anymore to make sure I have nursing covered when things come up. I don't want to stress over going to church because taking Autumn means distraction and trying to figure out the best places to go into the building at for ramps, lifts, and elevators. I don't want to wake up and think about the routine I have of meds, feeds, CPT, equipment cleaning, therapy, etc. I just want to be able to get up and do "normal" things....I want Autumn to be able to come into my bed and snuggle without having to carry the pulse ox, suction machine, and oxygen into the bed with us. I want to have a HUGE mess of things she's pulled out of her toy box or cabinets. I want to hear her say mommy and giggle and even cry when she's throwing a fit. Some days are just hard for me. I know you have to power to change our circumstances and so it frustrates me at times wondering why she's still dealing with the trach and her reflux issues. I'm so sick of seeing her gag and vomit after feeds. Please Lord just heal my baby girl. I get on my knees crying out to you...I know you hear me. You know my heart. You know I've trusted you and I've accepted the course you have taken us on. I know that you are a loving and merciful God. I know you want what is best for our family and know what you are doing in our lives even if I do not understand your ways. Although change is what I want...I also want your will to be done in our lives. I want to accept and not question your ways. I want to have continues peace even when I do not see the miracles I want. I want you to continue to give me strength to get through each day and allow me to persevere. Satan wants to see me fail at this task you have given our family...he wants it to destroy us. Instead you have allowed it to strengthen and build us up. You have taught us so much on this 2 year journey and I know you will continue to mold us into who you want us to be through Autumn's life. Remind me that on mornings like this when I'm SO sick of dealing with medical issues that you are right there with me holding me, comforting me, and feeling my pain. I KNOW this will pass because I KNOW it is in your plan to heal Autumn and for her to be trach free one day...you have given me that peace in my heart but it's this day that I just need to vent my frustrations and then be reminded of your great love for our family. Remind me that healing is going to come but it will be on your time and not mine. Lord, I'm so thankful that I can pray to you and only you truly know all the emotions and feelings inside of me and that you always give me peace after a time of pouring out my heart to you. I love you. Amen.

School

Sorry, loaded the pictures in the wrong order...oops! The first day went well for both kids. I did not cry leaving Gage because he walked right in, said hi to his teacher, and was ready for the day. I was proud of him. I did get teary eyed though about Madison. It's her last year of elementary and she looked so grown up and beautiful. I'm so proud of her as well. Day 2, Gage woke up not wanting to go. He finally came to the realization that he has to go 5 days a week for 7 hours each day and he does NOT like that. He thinks the days are too long. They rode the bus home yesterday and Gage enjoyed that. So, today was another good day for both of them. I guess he's doing fine at school...he really does not talk much about it. ;)

Madison would not let me take her picture in the school so I had to get back pictures.

Gage being Gage!

She's such a beautiful young lady!

2 in school...only one left....not sure if I will be able to let Autumn go without me though. ;)

It's here! Madison and Gage have gone to bed and ready to start their new year of school in the morning. I remember when I was sending Madison off to her first day of kinder...I was NOT worried at all! She's such an independant girl and so smart. She was always a handful for me but was always good for others. I KNEW she would do just fine and she has. I can not believe she has now outgrown me and starting 6th grade (now next year I will be terrified for her starting middle school). She's very excited about her teacher and new friends and school. I hope her 6th grade year was as awesome as mine was.

Gage DREADED the school idea until after Friday when we met his teacher. He already gave her a taste of his fun personality by striking a pose when she wanted to take his picture. Lord, help her this year. ;) He's excited about meeting new friends and can not wait until he can have some over for a sleepover. We already had met 3 families whose kids are in the same class as Gage so it will be good that he already as met a few kids. One of which is his pediatrician's son. Tonight he could not wait to go to bed so he could wake up for school. It helped take all my worries away about tomorrow because the past few weeks he's been a big momma's boy and I was afraid him and I would both be crying and not wanting to let go in the morning. I'm going to miss him though while he's gone. I've either not worked or have worked part time since having Gage so I think the house will feel empty and quiet all day. Who can I play the Wii with on my cleaning breaks now? Who's going to talk my ear off all day about levels on Super Mario Brothers? Who is going to eat breakfast every morning with Autumn in her bed? Okay, I am crying now. I guess since Madison was my first born I could not wait for the next adventure or phase but seeing how fast the time went from kinder-6th with her makes me want to freeze time now with all of them. I know life must go on and it's my job to raise them into independant adults one day but I REALLY wish they could all stay little forever. So, I will post pictures tomorrow and let you know how great their first day of shcool went...and hopefully my day will go good as well.

August 23rd

The day the kids go back to school. I've had a fantastic summer spending time with Madison and Gage but I have to say I'm looking forward to the peaceful days while they are gone. I will have more one on one time with Autumn. I will be able to clean my house and sit in a clean house for 7 hours before it gets destroyed again. I will have a daily routine and schedule back. I may even have time for myself to do some hobbies I enjoy or just relax on the couch watching TV or even napping. Awww....can't wait for school to begin again.

Triumphs

I feel this past week or so we have jumped hurdles when it comes to Autumn's developments and therapies. I feel like we are able to rejoice in all her triumphs. These may not be life-changing triumphs but big enough for me to notice and get excited about. Usually Autumn excels in one therapy area at a time but lately she's been doing something new in all 3 areas.

Speech: She's letting me use my finger to put a "dab" of baby food in her mouth without gaggin. I'm able to "try" to brush her teether without gagging as well. She also put a toy cookie to her mouth the other day which is huge because she doesn't mouth anything. She's also loving her PMV and making some noises and wanting to vocalize with us. James says she says "Dada" which technically she does but I think it's just because it sounds like a growl noise she kind of makes and she's not meaning to actually say "dada"---she really wants mama to be her first word. ;)

OT: She's grasping with her index finger and thumb to grab small objects, she's learned to clap (at everything), waves bye-bye, and now blows kissesd...she even puckers now to give kisses. She's focusing on toys more by actually looking at what we ask her to grab and hand us and not just throwingeverything off her tray onto the floor. She's also mastered the sign for bath and asks for one everytime we take her shirt off.

PT: She's been a rockstar. She's continuing to gain strength in her arms and core. She's army crawling and getting faster at moving to whatever she has her eye on to get into. She can pivot around and she tries to pull up her body weight with her arms. She's learned to move her stander more to almost doing circles. She loves getting into toys and movies on the entertainment center and making a big mess. She went from exploring just the livingroom to now the kitchen and office as well. She's alwasy go a new bruise everyday on her head or ribs from exploring and banging into stuff. She loves when I sit down to eat lunch with a TV tray so she can crawl over and move it the entire time I'm trying to eat. :) Unlike when Madison and Gage were little, I'm enjoying all the messes she's making and have a new appreciate for them.

She's also been consistent on being off the vent for a total of 8 hours a day and having a consistent breathrate of 20 at night without oxygen. We still have MANY more hurdles to jump like still trying to stop her retching episodes after feeds (although they are getting better), eating by mouth again, talking, sitting up, signing, and many more to come but I'm feeling like we are heading in the right direction again and will get there with LOTS of patience, hard-work, prayers, and faith.

Girls Week

This week Gage and my nephew, Dean, are at "Nana Camp" so it's just us girls hanging out. Yesterday we had lunch together and then pedicures. Today we took Autumn to the community pool for the first time. It was HOT but she enjoyed it. She loved the kiddie area that has a little fountain. We only stayed for an hour and she was worn out. Here are some pics:

This is all of our toes after our pedi's.

Madison and Haley getting started.


Me, Madison, and Autumn at the pool

Madison and I at the nail salon

Autumn swinging at the pool playground

Not sure if this video will work...it didn't on my computer and our sound is out so I decided to post anyways. ;) Sorry if it does not.

Autumn's New Stander

Autumn got her new stander yesterday and I'm loving it. Here is a video of her trying it out the first time at home.