No tech day

So, I get this great idea one day while watching Oprah. It was about families who gave up things for a entire week....well, I'm not willing to go that far but I got a new idea. I told my family for the whole summer we are going to have a "no tech day" one day each week. I've already picked which days it will be each week and it will change everyday of the week so I won't have to miss a favorite show every week. ;) We are not going to watch TV, play video games, or get on the computer for an entire day. I decided to do this because I'm interested to see how much it will change our family. Honestly, I expect that I get A LOT more done each day when I'm not checking my facebook every hour and I think it will bring us closer as a family. We are tech junkies around here. It's not unusual for all of us to be in 4 different rooms watching 4 different TV's. Now that I have a laptop I will be watching TV in the livingroom while I'm on the computer (like I'm doign right now). James said he can't wait until I go to bed at night so he can get break the rules. lol. I'm fine with that as long as he gives it a chance while the kids and I are awake. I did not think it through though before I announced the plan because I'm wondering how I'm going to entertain Gage tomorrow while Madison is gone and I'm trying to take care of Autumn stuff and just can't tell him to go watch Noggin. Surely we can manage just one day each week....I think if not then we have a serious problem we need to address. We will be forced to spend more quality time as a family and become more creative with what we do with our time. So, Tuesday I'm sure I will have a lot to write about. Tomorrow will also be a day I will be on the phone trying to switch nursing companies and getting everyone notified like insurance, MDCP rep., and info to nurses who may be following us to another company and dealing with supervisors from our current company...I also have dr. appts. to reschedule so we will not be in Dallas week after week this summer. I'm also going to start getting serious about losing this baby weight starting tomorrow and I guess I will have plenty of time to workout tomorrow without no TV. ;) Have a great Monday and I will talk to you all on Tuesday.

Fun, Fun, & More Fun....lots of pictures

Looking back over my pictures I realized May was filled with lots of fun for us so I thought I'd share some pictures and fun moments.

Here is Lily and Autumn on our last play day for about a month...both Sarah and I have busy June schedules coming up. Sarah and the boys playing Star Wars on the Wii.....not sure why Sarah thinks sticky her booty out helps her fight off the bad people. ;) I'm going to miss hanging out with my friend in June.
Every year I've been blessed to be able to attend Madison's field days at school. I always have a great time watching the kids having a day of fun in the sun.
Mom and I loaded up Autumn and she was able to go with us to field day. I was nervous it being the first time loading up without James helping and double checking me but I did fine. Autumn had a great time sitting in the sun and getting everyone's attention. Too bad she did not get a tan on those white, chubby legs.
Here is an action shot of Madison jumping over two jump ropes. She was the last girl standing and competing with the boys. I guess those long legs paid off for her.

Here's a picture of Madison and her 3 best friends from this year--Ivy, Chelse, and Emily.

Okay, this is the face when Gage sings this funny song...it's only about 4 words long and you can't understand the words but he makes this face and since it makes me laugh he does it all day long just so I will laugh. I can't wait to see what he becomes when he grows up.

I think we wore Autumn out from a fun-filled morning at field day. Thankfully the field day ended just when Autumn's pulse ox machine went out so we did not miss anything.

Here's Gage kind of playing with Autumn in her bed. He sits and takes away all her toys and plays with them but does not like to give her any and she just gets to sit and watch him play. Thanks A Lot Big Brother!

Here's how Madison plays with Autumn. She sits and talks with her. Autumn just loves the attention.

This is a picture of Autumn without her MicKey button in. I think she pulls on it so much she makes them leak so I had to change out her button and thought I'd get a picture of her bare belly.

This is a picture of Dash...my best friends dog that I fostered for one night until he could go to his new home. Her boys have become scared of him since he LOVES to jump and knock you over.

We had a blast playing with Dash. He kept Madison and Gage company ALL day yesterday. He jumped onto the trampoline with them and just tackled them down. Later I took Autumn out to see Dash and she liked his big, slobbery kisses. Later after my nurse got here I was able to go out and play as well. It was so much fun to just act like a kid again and roll around and wrestle with Dash on the trampoline. I think he was getting attached to me because he got his bone and then decided to just lay on top of me while chomping on his bone. Gosh, I REALLY miss having a dog around. After we went inside though he reminded me why we did not want or need another one right now. He got into the charcoal and dumped it all over the place and then this morning I woke up to my trampoline cover being chewed up. Good thing he's leaving this afternoon...lol...he really is a good dog but just needs some extra attention. It was great though to be able to spend time with a dog again for one evening and just forget everything that is going on with Autumn and the nursing company and just play. Thanks Tan for letting us dog sit!!!

So, it looks like all that I wanted to get done in June will not be happening since we will be switching companies and I will not have a day nurse until the last week of June. *sigh* We will manage and I will just have to make up for lost time in July. Please pray this other company will take our case and that the transition will go fast and smoothly. I know this week will be a headache but I can not work with a company whose management has behaved unethically and that I can not trust anymore.

COMPLETELY LIVID!!!

So, Monday morning I will be switching nursing companies. God has been faithful in taking care of Autumn and revealing lies to us about our current company. There is too much to get into right now but I will be letting you know some of the details after the switch has been made. I'm so thankful God is always faithful to us.

I moved Autumn's breathing rate to 6 today instead of waiting until Tuesday because she has been sitting at 100%. Whoo Hoo!

Improvements

Tuesday afternoon we changed Autumn's breath rate from 14 to 10. She been doing WONDERFUL on the new rate. The first night she needed some O2 I think from being a little tired from the new rate during the day. Yesterday though she spent all day (minus naps) on the new rate and sat at 98-100 all day and she needed no O2 last night. Also, during her naps she will last on the 10 rate for about 30 mins before desatting and needing to be turned up. If she continues to do well I will move her rate to 6 on Tuesday.

She has really improved with her head control these past 2 days. I will sit her in the corner of her bed and she will sit forward and hold her head up for about half a minute and just look around everywhere before falling forward. I am trying to teach her how to push herself up with her arms but she's not interested. She also is eager to try and roll in her bed. Yesterday I had her almost all the way on her tummy and she rolled to her back. She is getting a little more interested in things and wants to be more mobile.

She also got into trouble with her nurse this afternoon. He said he had just fed her and turned around and saw her pulling on her button so hard that she was almost pulling it out....I just gave her a new one this morning because her last one got a hole in it. So, he said later he had her sitting up and she grabbed her vent tubing and had it pulled all the way over her head. This morning she made her vent alarm go off from pulling her tubing up. She just gives you that big sweet smile so it's hard to get mad at her. ;) She's also getting a little spoiled and sometimes cries if you leave her alone in her room or put her down after holding her. So, it took about 4 months to get her all spoiled at home. I think she is going to have an interesting personality and may be a little mischievious (sp).

Gage's 5 year pictures

Here are some of the pictures from Gage's 5 year old photo session. I just LOVE them because they show Gage and his personality and I will have them to remember what he was like at this age. Enjoy! Thanks again Sarah!!!

Gage is his dragon costume

Hula Hooping

Singing on the Wii
Playing guitar hero
(he has many talents)
Him and sissy at the duck pond

Feeding the duck

Being silly

a

Doing good

Autumn has been doing good this week. I haven't called the doctor yet but I decided to up her Prevacid because I think that is what was causing her desats the other day. She's been doing fine since then....she's even back to no oxygen at night which just comes and goes. Well, I think we went too fast moving her breathing rate from 20 to 10...I think it may of pushed her too hard too fast. So, we moved her form 20 to 14 for a week and she did good so today I moved her to 10 and she did fine all day. Today I took Autumn to Madison's school for field day. Mom went with me but it was the first time to load up Autumn without James there knowing exactly what needs to be done without asking. It went smoothly though and the field day ended right when Autumn's pulse ox battery went out so it was perfect timing. She did great and enjoyed being outdoors all morning. Gage is back on the kick of wanting to hold and play with Autumn so here are a couple of pictures of them.

Gage went to his 5 year ceck-up today and did great. Of course the dr. was still pushing for us to do growth hormone shots with him but I explained our reasons why we are choosing not to at this time. There is no medical reason he needs them because he does produce the growth hormone it's just low doses and it would be just a cosmetic reason. We don't want him to grow up thinking something is wrong with him jsut because he's small. If he has a problem with his height one day and wants to get the shots then we will let him but I want it to be his decision. I want him to know God made him perfect and just because society thinks you should be a certain height does not mean that is what God wants. It was funny because the doctor was telling me about how he may have a hard time at school and may get teased....um...you don't think his little sister is going to have trouble with her issues..I think Gage will know that there are harder things in life than being short and he will be thankful that is his only "issue". Gage is so confident with himself that I don't think he will have any trouble with the other kids. He did gain 4 pounds and 3 inches since last year so he is growing but still not even on the charts. He is about 2-3 years behind on his growth but given his odds there was not much hope to begin with. ;) I thought she'd get onto us about his eating habits but was not too upset about it and thinks he will start eating better one day and jsut suggested giving him vitamins and pediasure to help with the nutrition. All and in all we are all doing well and ready for the summer!!!

Honesty

Okay, this blog is my way of updating everyone and journaling my own feelings and life. I try to be an open book and honest so other people can get a glimpse into what it really is like to be a special needs mom. Today is one of those days I feel like I'm having to "mourn". The silly thing is that I am mourning the loss of getting to take the kids to waterparks. It's the small things like this that gets me sad at times. I hate to admit it but the thought actually crossed my mind today on why did we decide to have a third baby? After all we've been through it's me mourning not being able to go to a waterpark this summer to make me think a thought like that?? It's the guilt that Madison and Gage are missing out on fun things like that because James and I are limited to where we can go. They are finally at that age where we could of really enjoyed just the four of us going to a waterpark without me having to sit in the baby pool with Gage while James takes Madison on all the fun rides and then switching so I can go have some fun. I can't even imagine us taking Autumn anywhere that is outdoors for too long since she get hot so easily with the vent. This summer our vacation will consist of the aquarium for a day....Madison still gets to go on vacations with her dad and grandma but Gage has to miss out. Hmmm.....I KNOW Autumn is blessing our lives so much more than having vacation in the summer but there are still times you just have to mourn the loss of something you want for something that is giving your life true meaning and purpose. It's the constant struggle of flesh and spirit. Bottom line....would I change our decision if I had known Autumn was going to be special needs and we would have to sacrifice waterparks?? No way but will I still mourn things that don't come easily for us or that we can no longer do? Probably. At times like this I just have to stay focused on the plan and purpose God has for our family and believe His will is being done in our lives and that our journey is showing His glory to others. I also have to believe that this will not be forever and one day all five of us will splashing at a waterpark together and praising God for His faithfulness to those who love Him.

What's going on?

This morning Autumn has 2 of her MAJOR desats and had another one for the nurse this evening. Not sure what's going on. I fed her about 11:30am and was waiting to decompress her tummy and just sitting in the chair in her room when she started beeping. I looked and it said she was in the 80's (typical) and looked at her and she was crying and turning completely blue. Her arms were above her head and she was all rigid. She looked so scared....I quickly turned up the oxygen and started stimulating her and saying, "Autumn, Autumn, breathe baby girl". She started getting her color back and had gone down into the 40's. So, I was looking at her pulse ox when I heard her crying a little and looked at her again and she was down AGAIN...oxygen was still ALL the way up. I figured it must be a plug then and suctioned but she was completely clear. I started stimulating her again and she started turning pink again. I guess daddy her me this time telling her to breathe so he woke up and came to see what was going on. Gosh, it has been since March since she has turned COMPLETELY dusky and all rigid so it got my heart pumping since I'm not so use to those episodes anymore. So, not sure if it's her shunt or if she is doing it to herself when she gets upset or if it's just plainly her brainstem. I told my nurse to watch her extra carefully tonight and about an hour ago she decided to show him her little trick as well. He said she went to the 40's and was just staring and he started stimulating her and it scared her and she came back up...he said the vent was breathing for her while she was down. We've tested her for seizures but sometimes I wonder if when she looks blank like that if it is a seizure or if she just goes blank because her brain is not sending the signal to her? The sleep study in June may show us what's going on. Taking her bottle away and getting a new pulse ox seemed to fix the desat problems but with it coming back today it makes me wonder what is going on. Actually, now that I think about it...she had the desat with her nurse after being fed so I wonder if the acid reflux is getting worse and that is causing her the desats??? Lots of questions for the doctors at the next visit I guess.

8 months old

Yesterday Autumn turned 8 months old and today is her 4 month anniversary of being home. So, she's been home as long as she was in the hospital. Why did the first 4 months go by SO much slower than these past 4 months? As I look back over the past 4 months I can see how much improvement Autumn has done. It just blows my mind she will be one in 4 more months. I feel like I have a 4 month old since it's hard to count the days spent in the hospital since you can not really get to know your child in the hospital as well as you do when they are at home. She is getting to where she knows and wants mommy and daddy when stangers or even nurses are here. She sees the nurses almost as often as us but she definitely knows the difference. Everytime a new face walks up to talk to her she will look at me like is it okay? My fear when she was in the hospital is that her and I would not have that bond since we lost some cuddling time together but we have made up for that in these past 4 months. Some evenings she just cries because she wants mommy or daddy with her to hold, cuddle, and sit with her instead of a nurse. The other day she was laying in the livingroom and I made a bed on the floor to lay next to her to take a nap. She was sound asleep but as soon as she felt me cuddling next to her she opened her eyes and was just smiling at me. She then would not go back to sleep because she was so happy mommy was laying there with her. Even last night the nurse said Autumn was sleeping and James walked in the room and started talking and she immediately woke up to see her daddy. So, I know she loves us and she knows who loves her.

What does the future hold?

I find myself thinking about where God is going to lead us in the future. It makes me excited and scared at the same time. I just know God has BIG plans for our family and Autumn has completely changed my life and purpose. I have awareness now and see needs that need to be helped. Does God want us to counsel other special needs parents? Adopt special needs kids? Start a campaign to educate women who want to terminate their babies because they are not going to be what they see as perfect? Write a book about God's unbelievable work in our lives? He's been bringing all these thoughts to my mind but really has not shown me just yet what His plan is. All I know right now is He wants me to start documenting Autumn's life and my thoughts and feelings. How He chooses to use this in the future is really up to Him. I'm sure whatever He calls of me I will NOT want to do but I know He always knows best if I just trust.

I also know a move is in our future and scared to death about that as well. I can't imagine leaving the same city my mom is in.....she's such a blessing to me and having her so active in my kids lives is so crucial to me. I LOVE that my kids get to just have fun and get spoiled by Nana and they will always have such great memories of Nana and Grampy. I know though James needs a change. He has sacrificed so much the past 6 years of our marriage...living in a city he's not crazy about, going to a job that he has to wonder if he will get to come home each night to his family, and not being near his family and friends. I think moving to the Dallas area will just allow him to reach his goals to where he feels he's being called in life.

So, as we keep praying for Autumn's future we continue to pray for the future of our whole family and can't wait to see where God is going with all of this but I know it will be GREAT!!!

We've been busy!!!

Friday night we had a birthday party. Saturday my in-laws came to spend a few days with us and that evening I had another party to go to. Sunday was Gage's birthday and the first time we took Autumn to church and had his birthday party that afternooon. Autumn did great at church and did not beep once. Thank goodness! Gage's party was a hit and I think everyone had a good time....I did not feel like posting those pictures though..sorry. This has been a busy week of therapy, which I dread doing. Monday was OT, Tuesday was PT, and today was OT again. We are doing make-ups so it ended up being really busy. We also had a photographer named Sarah Stepan who goes to our church that came to spend the day with us. We are doing a documentary type thing for the day in the life of Autumn...I will post more on this later but not really sure what God is going to lead me to do with this but I know he's got some BIG plans! So, she shadowed me this morning and then she took Gage's 5 year old pictures.....she already has a few blogged on her blog at www.sarahstepanphotography.com and I will post some more when I get the pictures from her. She did a GREAT job of capturing the real Gage and believe me he was not easy to work with.

Autumn got a new contraption for therapy. It's called a SWASH and it helps support her so we can sit her up and she can concentrate on working on her head control and not trying to do trunk control and head control at the same time. I think it's going to make a big difference. I'm a little frustrated because they therapists want me to work on therapy more than I have time for and I'm sick of having to make EVERYTHING into a therapy session and not being able to just enjoy loving on Autumn. There is just not enough hours in the day...they want me to do head control, rolling over, trunk control, work on pushing with her arms, leaning on her arms, banging objects, etc. Okay, when am I suppose to do my household chores, play and care for my other kids, have my time, and everything else life demands. I'm not superwoman people!!! lol Also, Autumn can only handle so much and she is wiped out....today she was not very cooperative during OT because I think she's tired of it as well. ;) Anyways, here is a picture of the SWASH..... It props her up and you can see how well she's holding her head up..it makes it hands free for me as well so I can do things while she's getting therapy done. Sometimes I put a boppy pillow in front of her to lean on to work on pushing with her arms. I have to watch her though when I do it that way because she will lean back and the SWASH stays in one place but her head will be bent completely backwards and she will be leaning almost all the way back. Oops!

Here's daddy and Autumn at the duck pond

Here's Sarah trying to get in front of Gage for pictures.

Autumn enjoying her first trip to the duck pond. Three little kids were walking by when Autumn started beeping. They stopped to see what was going on.....one boy (about 7) looked at me real sad and said, "I'm sorry"....I did not know how to respond. He then asked if she was sick. So, I explained to the kids that sometimes her brain does not tell her to breathe that's why she needs a machine. I told them about the "hole" in her neck and how she breathes differently than we do. One boy said, "I don't have a hole in my neck" and showed me. They were sweet kids and then started talking to Autumn. I like when I can explain to kids about Autumn and hopefully them understanding they will realize she's almost as normal as they are and accept kids that are different. They were excited to show Autumn to their grandparents. Kids are always more curious and honest and I would rather they come up and asked me about her then just stare at her like most adults do. ;)

That is our busy week and the rest of the week should be pretty calm. I do have to do some volunteer hours with Madison for church camp but not really sure if we will be able to get them all in because tomorrow we were going to do a couple but now my nurse can't come until later and James is working so hopefully we can find some time before May 28th when they are due. Have a blessed week.

Happy 5th Birthday Gage!

I'm 5! I'm 5! That is what we have been hearing Gage yell all morning. He keeps telling me he can't believe he's five and I agree with him. So, my only boy is growing up and I just want him to STOP!!! I guess it has to happen though.

Here's a walk down memory lane:

May 17, 2004-we were so excited to find out we had a little boy!

Gage at a year old

At his 2nd birthday party

Gage's 3rd birthday

This is Gage at 4

And now my little boy at 5!!!

Just seeing his face makes me smile!!! I pray the next 5 years will go MUCH slower than the first five went. :( At least he will be waiting a year to start kindergarten so I have one more year of him home with me. Today we are going to church with Autumn the first time and then having a fun bowling party this afternoon. It should be a great day!!!

BTW, the little girl Kayleigh I mentioned awhile back to pray for....well, she went to be with her Heavenly Father on Monday and her funeral is this afternoon so please say a prayer for the Freeman family today.

Autumn's new stroller

Did you ever wonder what a $6,000.00 stroller would look like? Well, here it is. We are so excited that insurance has approved our stroller and we got it today. The first picture has the tray attached but you can barely see it since it's clear but it is big. There's also feet stir-ups that one day Autumn will grow into and probably use.Here's the front view...I think she likes it.
This is the side view where the oxygen tank is attached. It does not fit through narrow doorways when the tank is in but the great thing is the holder detaches easily and I can take it off to push through a doorway and then put it right back without having to take the tank out.

This is from the back view showing that there is an attachment that attaches the vent directly to the back of the stroller so we can see the buttons and get to it. I put her bag with the emergency trachs and ambu bag behind the pulse ox and the put the pulse ox on top of it. You can see she was sitting at 100 on her new breath rate. I'm so proud of her. There is also a small pouch to put things in behind the vent in case I need it.

This is the other side view where I hung her diaper bag over the arm rest and then used the plastic ties things that comes with her circuits to tie the circuits up so they won't get caught in the wheels.

Here's a front view showing the suction machine fits perfectly underneath the front of the stroller. It works perfectly here because Autumn is not suctioned too much so it will be out of the way unless we need it.

The only bad things about the new stroller is that it does collapse down but I think it's too heavy for me to load and unload by myself. We're not even sure if it will fit in the back of our van with the seat up so we will have to test that out before we go anywhere. There is also no latch to keep it from unfolding when we pick it up so that we ordering us something to latch it down to help when we are lifting. They are great about fixing anything to help us out.

We are also getting our backpack for the vent and the lithium batteries today as well so I'm excited there will be no more lugging around the HUGE back-up battery. We are also getting another pulse oximeter to try out over the weekend to see if we like it better than the other one the insurance purchased for us. If so, they will give us that one and send back the other one but if not then we will probably have to deal with the one insurance got us. If it just had a different beep that I could hear better and if the sensor did not have to go around her toe it would not be so bad. I love it has an internal battery of 16 hours compared to the one we have now that only has a 2 hour battery. So, right now we can only be away from plugs for 2 hours before needing to get her to one...that's sorry for when we want to go to fun places but we'll manage I guess. So, it looks like we will get to take our little girl to church for the first time this Sunday. YEA!!!!

Dream

I had an AMAZING dream last night. I dreamed that Autumn woke up and was HEALED!!! She was holding her head up and sitting and she was talking!!! I could hear her voice and it was so sweet and she knew so many words. I guess that means she was older. ;) So, maybe it was my vision for the future and it made me REALLY excited! We were taking her to everyone we know and was showing God's amazing miracle. It gave me hope and the drive to keep believing IT will happen ONE day.

Grape Nanny, Sadie, Maggee, and 6th month anniversary

What a busy 3 days we've had. Monday on our way to Dallas we stopped to visit Grape Nanny (James' grandmother) and Uncle Billy. She also took our Sadie to live with her so we got to see Sadie again. She remembered us but you can tell she loves her new home. We are so glad! Sadie with her cute haircut.
I just threw this picture in because it was so darn cute!

Tuesday evening after a long day of appointments we had been invited to have dinner with the Bryan's and Cole's.
Okay, this is how we met the Cole's: Both Brooke and I went to the same periantologist (sp) and they came across my blog and found out we were going to the same doctor and when I gave birth to Autumn, Brooke showed up at the hospital to meet us for the first time (the dr. had given us the heads up they knew us). I know, sounds like a stalker situation but they are a normal family.....I can just hear Brooke laughing as she's reading this about the whole stalker thing. Anyways, they ended up being in the NICU the same time we were and her mom (the Bryan family) and aunt had bought us gift cards to help with meals. They even bought us food while we were all hanging out in the NICU. Their daughter Maggee also has spina bifida as well. The are such a great family and we are so thankful to have met them and I hope we remain close throughout the years and give Autumn and Maggee a friendship to have to share similarities with each other. We make lots of jokes about what they will be like in their walkers and wheelchairs--that is what I like about them....they know how to laugh and not take life so seriuosly. They are super sarcastic and so much fun to be around.
Back to our evening, we all got together at the Bryan's beautiful home with their entire family (almost). They have been following Autumn's progress since before her birth and everyone wanted to see how well she's doing since seeing her last in the NICU. It was a wonderful time of fellowship and the food was yummy...the dessert was to die for. When James and I left we were talking about how we hope when our kids are all grown they will want to invite their friends over and still come hang out with us---you can tell their family is close and loves to be together.

THANK YOU ALL FOR A WONDERFUL NIGHT AND A TIME JAMES AND I COULD GET OUT WITH AUTUMN TO JUST BE NORMAL FOR THE EVENING!!! WE LOVE YOU GUYS!

Brooke and I
(I made her sit down because she's so tall)



Autumn and Maggee
(Okay I posted the wrong picture--Autumn looks scared in this one but Maggee is such a ham when it comes to pictures) We woke them up for pictures so I think Autumn was still stunned.....there is about 8 people looking at them and about 3 cameras all flashing

Today is the 6th month anniversary for Autumn getting her trach. I can not believe we have been doing trach care for 6 months now....I guess that's why I'm getting so good about doing it alone. I never thought in only 6 months we would be moving her vent setting down. Thank you Lord for all your miracles....big and small and for great friends and family.

*Correction to last post: I explained the breath rate wrong....it means how many breaths the vent takes for her in a minute and not the other way I explained. So, the vent will be taking 10 breaths for her each minute instead of 20. I was confused because you can see when the vent breathes for her and when she's taking the breath so I NEVER see the vent take the breaths but I guess they are being thrown in there at some point...probably the same time she's already taking a breath) At night though you see the vent taking all the breaths and not Autumn..most of the time.

Going down.....

on Autumn's vent settings. YEA!!! This morning was our neuro appt. and he said everything looks fine and we will go back in 3 months for an MRI.

Next was vent clinic. After a LONG wait we were finally seen. I first asked about getting a PMV which is a speaking valve to be able to hear Autumn. He said that would be fine and we can have our DME order one but if they can't find the right one then to remind them before our next vent clinic and they will have one for us. We talked about how well Autumn has been doing on the vent and not needing O2 anymore unless she desats and we turn it on just until she comes back up and then turn her off again. So, he asked if we were ready to play with her and I was jumping and screaming in YES!!!! So, we moved the breath rate down from 20 to 10 during the day, which means if she does not take at least 10 breaths per minute then the vent will take a breath for her. If she does well with that, after one week we will move her to a 6, and after 2 more weeks if she's okay we will move her to 0. Wow! I was shocked he was ready to push her this hard but so excited. So, we moved her to a 10 right away and she did great all evening. She fell asleep and lasted for a little while at 10 before desatted into the 80's so we turned her up to 20 for the night. So, when she takes naps and at night her rate will go back to 20. He said when she goes back next month and is doing good we will see what we can start doing to get her off the vent during the day. Wow, God is healing my baby girl....I can't imagine what it will be like to have her off of the vent during the day. I told James we could be moving to Dallas next summer if she gets off the vent during the day. ;) There was no way I thought we would be weaning day time stuff this soon but so thankful she's doing so well and we are able to start the process. I can see each day how her brain in maturing more and more and she's being healed. God is just so good. I mean, I can handle the vent at night--I'm just so sick of lugging everything around and not being able to get up and go with Autumn by myself. Well, it's been a busy 2 days for us.....lots to post about our visit with Grape Nanny (Autumn's great-grandmother) and the Bryan and Cole family (their child/grandchild has SB also). I'm too tired to post about it tonight but will try to get to it tomorrow--just wanted to share the exciting new about the vent before I go to bed.. Goodnight all!

Happy Mother's Day

My kids that me make what I am today!! Happy Mother's Day to all the mommy's out there!!! 10 years ago when I first became a mother I never realized how much my life would change and how much love a person could hold in their heart.

Madison is my first-born and she has broken me into motherhood with a bang! She has those qualities that I never liked about myself but seeing them in my child has made me learn to love those qualities in myself as well. You know, the stubborness and independence. She was the child I could never take anywhere because you never knew when she was going to have a breakdown and throw the biggest temper tantrum. We have had so many fights and arguments over the years....I was such a young mother when I had her so me trying to find myself and become a woman myself and trying to raise a little girl at the same time was not easy. I think though we have both found an appreciation for each other and our relationship is now starting to blossom. She is so intelligent though so I am trying to figure out how to teach her...she's like a robot and needs step by step instructions and can not handle any curve balls. Her mind is programmed on a level that it's hard for me to know how to teach her but with many mistakes on the way I'm slowly learning how to communcate with her. She's also very sensitive and emotional (something I'm not) so it's hard for me to see her letting her emotionals control her and how to handle that without losing my patience with her. Today Madison amazes me with the love and compassion she has for others. She's always willing to help me out and is so caring. She's the kid you can see going either way but she has a good head on her shoulders and is walking in the right direction.

Gage is my only son and a momma's boy (I at least like to think so). He showed me how boys are totally different than girls. When he was a baby I could not keep him out of eating the dog food or climbing out of anything I put him in. His energy level amazes me....he does not like to sleep so is on the go ALL day. He is such a happy kid and he can go from crying to laughing in minutes. He is so talented as well but a little too competitive. He's at the age now where his temper is showing through and he can be a drama king. It's so cute though when he gets mad because he's still so small. He's also breaking me into all the boy thoughts and gross words they like to say that they think is so funny. He loves to be naked and thinks it's okay to pee just about anywhere. Boys are a different species. :) He's the one who will cuddle with mommy and just love me whenever I need some affection. I always tease I'm going to be a horrible mother in law one day because Gage will always be my little boy and he knows how to always make me laugh.

Autumn is my sweet baby girl and the one who has shaped this mommy into something I never thought I'd become. Being a mom in general is the hardest job in the world but becoming a mom of a special needs child makes you reach deep down inside yourself for the strength you never thought you possessed. I guess it's the secret tool God has given special needs moms, along with a side of perseverance and a voice to speak out for your child and stand up to people that would normally intimidate you. All of my children bring me joy but Autumn shows me that joy that you can possess even when things aren't the way you imagined them to be. I never thought such a little baby could become such an inspration to me. Seeing her wake up each day with a smile on her face even after all the 7 surgeries she has endured. Seeing the pride beam out of her eyes when she has held her head up...you can already see the drive and determination in her eyes at such a young age. I know her and I will endure MANY challenges ahead but I feel the hardest part is over and if we got through these first few months we can get through anything. ;)

Not only do I have wonderful children I have an amazing husband and father to my children. I teased him yesterday about not being good about buying me cards or gifts but woke up this morning to my favorite gift of all time from him...a letter. He writes me letters that ALWAYS make me cry. This letter was just how proud of me he is and how he is thankful I'm the mother of his kids. I think this is the ultimate compliment for any mother to know your husband is proud of you and thinks you are the best mother for his children. Honestly, I am only the mother I am today because I have a man that is there to help me every step of the way. I don't know what I'd do without his support and love. He told me when he thinks of me he always thinks of Proverbs 31 but this year 2 Corinthians 3:18 stood out to him.

And we, who with unveiled faces all reflect the Lord's glory, are being transformed into his likeness with ever-increasing glory, which comes from the Lord, who is the Spirit.

2 Corinthians 3:18

Becoming more like Christ is my goal and to see that James sees this Mother's Day I have changed and I am striving to be more like Christ each day is the greatest compliment as a Christian woman. God has used each of my children help me to get to the goal of becoming more like him. I know HE has lots more planned for me in the future and it terrifies me what I will be called to next but I know now I CAN do whatever He calls me to do.

Well, last night I told James it was going to be my day off today...lol....I forgot mom's never get a day off. I wanted to be able to bring all 3 of my kids to church with us on Mother's Day but Autumn's stroller did not come in so us trying to work through the crowded halls of our church with me pushing the stroller and James with the oxygen tank did not seem reasonable. Me trying to get Madison upstairs to her class and James taking Gage downstairs to his we could not break-up like we normally do with him having the oxygen tank. Madison and I planned going for a camp meeting a church but plans changed after I woke up this morning. First thing I got a phone call from my mom saying my MawMaw was in ICU sick. She thought she may have mono but last night she could not take her sore throat anymore and went to the ER and they admitted her to ICU. So, we are waiting to see what it is that she has and praying hard she will recover quickly. Gage woke up sick as well. He's been lethargic all morning and sleeping off and on--with me rocking him in between. Madison stepped up and has been taking care of Autumn. So, we decided to make the next camp meeting and stay home because I did not want to leave James alone with both kids just in case Gage starts vomiting and Autumn starts beeping at the same time...at least we can tag team with me home. So, it will be "just another day" for this mom and do the job I love best...being Madison, Gage, and Autumn's mommy!!!

Mid-week update

Autumn's all better. She had 2 sessions of OT this week to make up for the session she missed last week. They are working on her bearing weight on her hands to push herself up to a sit. She seems to have more trunk control than she does head control. Sitting up she can hold herself up with her body but just can not hold her head up on her own. I have a cute pictures of it but right now I'm too lazy to download it. She is also wanting to roll onto her stomach from her side so that is encouraging to see her trying. Her hands have to always be busy playing with toys and she's a wild girl swinging them around. The other day I wa leaning over her and praying over her when she got ahold of the skin right underneath my eye. Man, it hurt and she did not want to let go. Then next day she pucnhed her Nana in the face so she may end up being a mean little girl. ;) It does not help when her brother is teaching her to punch. He's now learned to help me with trach care when no one else is around or willing. He also wants to suction her and does not understand that he's too little so I let him put his finger over the hole that makes the suction so he can still help out. Today I was changing Autumn's diaper and she reached for her foot, pulled off her sock, and put it in her mouth. It was good to see her reaching for her toes (only if she could raise that leg up herself). Also, my new thing is to load up all her equipment in the stroller and then push the stroller to whatever room I'm taking her to and just hold her where she's looking over my shoulder. By doing this she really raises her head up and looks around and is getting more control. I was pretty discouraged about her head control over the weekend since when she was sick we did not work with her and she seemed to take a few steps back but she picked them right back up as soon as she got her strength back so I am feeling better about it now. We got our permanent pulse oximeter machine today that the insurance bought for us since it's cheaper than reanting. Well, I'm not too happy with it and pray it grows on me. The good thing is that it's really small and light and the internal battery will last 16 hours!!! The bad thing is that the volume is either low or high and the high is not loud enough for me to hear while sleeping and it sounds like a soft sounding car horn...it also only beeps twice...waits 10 seconds...beeps..and so on. Without a constant beep I'm not sure it will wake me and I will have to go to Autumn's room on the first beep right away to see where she is rather than waiting a few seconds to see if the beeping will stop before having to go check on her. So, that will make me get even less done during the days she wants to beep all day. :) The sensor for the pulse ox only goes around her toe instead of around her whole foot so it does not like to stay on as well and I hope it does not start burning her big toe...we'll see. I guess if does not work we will just have to go purchase one on our own...I mean is she's going to have it for several years it will be worth getting one we REALLY like and that fits all of our needs. With other pulse ox machines you replace the whole sensor cord each week but with this one you just replace the sticky part that goes on the cord so I hope nothing ever happens to the sensor cord as well--that's the kind insurance wanted. Ugh!!! I hope the beep grows on me and I will get use to hearing it so that I can go back to not having night nurses when James is off...I'm afraid now we are going to have to keep them but we already have all of May and June scheduled without night nursing on James' nights off and if we need more hours we will have to once again train a new nurse. I hate training and getting to know new nurses so please pray that it will all work out. I guess I could just go out and buy a cot to sleep in Autumn's room so I will be sure to hear her. Well, Madison went back to the doctor and her blood pressure is fine....she was just nervous the first time but we still have to check it at home each week. So, that's our week so far.

It's nurse appreciation week so tell a nurse thank you. Even though I hate having them in my home, I am so thankful for them and I'm blessed to finally have a team of nurses I can really trust. It makes me remember my aunt Rhonda this week. She passed away almost 3 years ago and she was always the nurse I counted on and I know if she was still with us today she would not hesitate to be here taking care of Autumn for me. Gosh, I miss her so much and wish she was still here!!! When I was little I remember my aunt Rhonda would bring any shots I needed home with her and both of my parents would have to hold me down while aunt Rhonda gave me the shots. Hmmm...maybe that's where Madison gets it??? It's also teacher appreciation week so don't forget those teachers as well. I don't think they should have them in the same week though since I'm going broke buying everyone gifts. I hope everyone has a great week...we will be back in Dallas next week for more appts. so please keep us in your prayers.

Sounds aren't always good.

We learned something new today. Last weekend when Autumn was really sick she was making more noises through her trach. I was excited thinking maybe as she's getting older she is learning to make noises. During this time she would breathe from her diaphram more and we would give her a Xopenex treatment to help her and she would be fine. When we did her trach change on Thursday there was some thick yellow secretions in the tubing (Autumn rarely has thick secretions). This morning I was in the other room and did not even have the baby monitor on and I heard Autumn crying. I go in there and she's crying like something is wrong. Her stats were good but I could just tell it was something to do with her trach. I suctioned her and sure enough she had a plug (which is just a blob of secretions that make a plug in her trach). As soon as the plug came out no more noise. So, I've learned she can make noise only when her trach is blocked. This afternoon she was breathing as though she was having difficulty but her stats were still at 100%. I did CPT-did not help. I gave a Xopenex treatment-still did not help. She sounded wheezy so I tried suctioned and the tube did not feel blocked--use some saline and still nothing. She started crying and we once again could hear her. James and I decided to do a trach change and sure enough there were thick secretions in the inside of her trach. She sounded completely find afterwards. So, even though I love being able to hear Autumn make noises now I know that it means she got some thick secretions we need to fix. Not sure exactly why she's getting these secretions all of a sudden and just praying there is not an infection coming around the corner.

My nurse is still sick tonight so in the past 9 days we will have had a nurse only one day. I'm glad to know we are doing fine and I'm not as tired as I thought I would be. I guess we will end up with just needing day nursing sooner than we thought. :) Although James has been home to help on the nights the nurses are not here and I have not had to get up in the middle of the night so the story may change when he's working again. I know Autumn has loved all the time spent with the family instead of laying in her room.

My perfect evening

Okay, this is a post I've been trying to do for several days now but from the previous posts you can see I have not had time to sit down and blog about it. One evening last week we were nurse free and it was just me with the 3 kids. What a blissful evening we had! I first made dinner--chicken fried steak and I was so excited because after 6 years of trying to make it like my mother-in-law I finally got it down and it was yummy.

Gage and Madison played cars on the floor while Autumn looked on. (she looks bored to me)We then loaded up Autumn and took her outside while I watered the grass and the kids rode on their scooters. She absolutely loved it outside and just watched the birds and sissy and bubba running by.

Later I strolled her into the bathroom while I got ready for the night. I discovered the stroller is too wide for the bathroom and it is pretty tight getting her around in the hallway of our house. I hope her new stroller will fit easier in and out of doors. I have realized when we move and get a new house we will have to make sure there are wide doorways for her walker/wheelchair or whatever she will have when she gets older. It was then time to get her fed and ready for bed. I LOVED just being mommy and feeling normal for the evening without having other people in my house. It really was the perfect evening, I just wish daddy could of been home as well.

The next morning I decided to just load her up and take her room by room while I cleaned house. I would do this everyday but it is time consuming to get her tranferred over so maybe we will do every other day.

I think the nursing situation is becoming more clear to me now. We finally have 2 nurses we are really comfortable with that will be doing our night shifts this summer on the days James works--they will be here for a 12 hour shift so I can sleep all night. We will have a day nurse that will be here until my friend's mom moves here to do my day nursing. I have such peace about this because I can feel comfortable with knowing that "B" will love on Autumn and treat her like one of her grandkids and make sure Autumn gets the therapy and attention she needs everyday. I can leave without feeling guilty and thinking Autumn is laying in her bed the whole day doing nothing. James is on the same page now seeing that we can do it without nursing--when nurses are not here we bring her into the living room and can just see how much more happier she is being around the family. So, God once again provided and was listening to my complaining all along.