"Mommy, Look what I can do!!!"

Autumn has finally perfected sitting straight up in her bed all by herself. This video makes me smile because you can just see the pride beaming from her face. The cons to this is that now when we want to change diapers or do trach care she's trying to pull herself up which makes it harder on mommy but I am so proud of her!!!

Autumn in the bathtub

Here a video of Autumn taking her first bath in a big tub. She's still not quite ready so we are still in a baby tub until her trunk control gets a little better but mommy just had to test it out.

1 year anniversay

Okay, so I just realized I'm 2 days late with the celebration (lots going on) but today I remembered that Autumn has been home for a year now. Whoo Hoo! Let me just say that this has been the most amazing year of my life!

I've come to know God in a much deeper way and understand His love for me even more...yes, there were times of doubt but looking back I see how His hand has been marked all over our lives.

My husband and I have become a stronger team and work so well together and balance each other out.

I've come to appreciate my children more this year than I ever have before. I see now the little things in life that I need to cherish more and to just take time to sit back and actually enjoy their presence.

I've changed more and continue to change. I'm finally able to conquer some of the struggles I've had for years like my lack of patience and hot temperment. Autumn has allowed God to work in me those deep areas I've dealt with for years by teaching me patience and compassion in a way I never saw before she was in my life.

Our worst fears came true the day we realized Autumn needed to be trached and vent dependent and we wondered what our lives would be like from that day on. Our fears quickly vanished though each day when we would wake up every morning to this special little girl who always greets us with a HUGE smile. It took me awhile to accept what task we were given but once we got the hang of dealing with all the extra equipment and doing things a little differently than normal we were able to experience the joy God wanted us to experience all along. Our family is just as God planned and we feel complete now. We love all we've been blessed with and so thankful for what this past year has done in our lives. I'm anxious to see what lessons, changes, and blessings God has in store for us this next year.

Under contract

So, we got an offer on our house and then we counter-offered and they accepted. YEA!!! Now we just have to see what the inspection says and see if there's going to be some more negotiating or not. We are closing on Feb.22nd so that leaves me with 4 weeks to pack things up. Actually, less than that since we have dr. appts, therapy sessions, school, gymnastics, v-day parties, PTA meetings, WIC appt, MDCP appt. and another Dallas trip ALL before the 22nd. We were only going to have a 3 day Dallas trip but since we are selling we may make the trip longer so we can find us a house. So far we have no trips scheduled in March to go to Dallas so this trip will be the one where we will have to find that perfect home. ;) I'm just praying our house stays healthy and Autumn cooperates through the next 4 weeks so everything can get done. I also really pray James gets the job asap so we move forward with buying us a house. So, we will be moving in with my parents until things are all situated in Dallas and then we decided to not wait until the school year is over so we will move as soon as we get a house all ready and nursing and medical company all situated. I hope to be there by the middle of April since we have many appts. scheduled that month already in Dallas but we will see how things come together and if it will happen by then.

Short update

We made it home.

Autumn is not vomiting her feeds anymore and actually ate by mouth again at lunch today.

James passed his first interview process..waiting on them to do background check and then to set up second interview and if offered the job he will just have to pass the physical and psychological exam to start.

We received an offer on our house today and so starting the process of negotiations.

Now, time for bed.

Shunt is fine

Dr. called back and the results came back fine. Since she's doing better we are going to hold off on the upper GI until we see if the increase in Prevacid helps with the vomiting. If not, then we can always get one done in Midland and then see the results and see what needs to be done.

Waiting

We are still awaiting for the results from her dr. I called this morning but they were in a meeting and still have not received a call back. Autumn though did good last night. No more fever, no more oxygen, and no vomiting. We still used her max breathrate though. This morning she did spit up a little but not all her feeding like she had been doing. Right now she's at a breathrate of 10 but beeping kind of frequently so I may have to turn her up...it's mainly because she keeps fussing at us when she drops her toys. ;) So, we are just waiting to hear what to do next...will keep everyone posted.

6 hour dr.appt. day

So, Autumn's temp got up to 101.8 last night so this morning both James and I were concerned it may be a shunt issue now since she's needing oxygen at night, high breathrate, vomiting, and fever. So, I called her SB dr. and they agreed it could either be reflux issues like I first suspected or shunt issues or even aspiration/infection issues. They recommended we see what we could figure out at vent clinic and then we would see about getting the shunt checked while we are in town. So, we got to vent clinic at 11:00am. They do a first come first serve thing but the clinic actually does not start until 12:30pm. So, Autumn's bloodwork came out fine, CO2 levels were good, chest x-rays were good, trach aspirate was fine. So, they said they figure it is either the shunt or GI issues. They did double her prevacid dose and put her on Tobramycin (an inhalant) just to see if that helped some. Our phenobarb had spilled during the trip down so they had that refilled for us as well. They have a pharmacy (located in Rowlett) that delivers your prescriptions to your house. How awesome is that!! So, all the meds got delivered to my brother's house at 5pm. The new prevacid is white like it should be so I am praying that is one answer to our problems.

So, after being at vent clinic from 11am-3pm we head over to Children's hospital to get a shunt series and a CT scan done to check the shunt. So, by 5pm we were finally done for the day. Gage was with us all day long and did a great job. Now we are waiting for the results and if that checks out fine then we will see about getting a GI series done to see the mobility of how her formula is moving through her intestines. We may also have to see into another swallow stdy down the road as well but my be getting the GI done tomorrow. They can always put her on a med to help with the mobility. Shockingly, Autumn does not have a GI doctor but I think we will be getting one in her near future.

I also asked about Autumn not able to tolerate her PMV valve and they said to ask ENT about it next month since she should be able to tolerate it and there may be some airway issues going on as well. Really?! We wanted more issues because we just don't feel like we have enough. Sheesh!

I told James that days like this when I'm overwhelmed and tired that I just want to say to God...Okay Lord, we're tired of this marathon. Can you make this just a short sprint instead? Some days I'm just so sick of drs. and brainstorming ideas on what may be going on. I quickly remember though the reason we do it and that is for Autumn. She deserves every second of my tiredness from fighting for her to be well and get the care she needs. I know she was made for a purpose and she was given to us for a special reason so even though I feel like I can not take one more step at times, my foot will keep going forward as long as God allows for our journey to continue (hopefully that will be for MANY, MANY years). Oh, and mom called me this morning because Madison stayed home sick from school with vomiting. It never ends on this journey!

Night 4

I guess Autumn has decided she would give me a break every other night. ;) She did fine last night and only kept me up for an hour. She ran a low grade fever but did fine all day long. She still needed O2 at night but doing much better during the day.

We took her for her eye check-up today. He said he was very pleased with how her eyes look and that he wouldn't need to see her again for another 6-12 months. Whoo Hoo! He said we could just schedule it when we would be back in town and when it would be convenient for us. I could happily say that we would be living here by then so we can schedule whenever!!! After her appt. we went house looking. We saw 8 houses and there were 2-3 we liked but one that I think would really work for us if we do not find something else. It had a bathroom which already had the wheelchair handles right next to a bedroom that could be for Autumn and the master just across from the livingroom. Not sure if it will still be on the market when we are ready to buy but maybe it will be. Wednesday we are going to look some more. ;) Gage had a great time running through the empty houses and searching through them but there was none he said he liked. Good thing he's not choosing.

Autumn is still vomiting her feeds...we are basically having to only give her 2 oz. at a time and wait about 15 mins to finish or she can't hold it down. I think a HUGE issue is her prevacid this month...it's compounded and sometimes it's not done as white as normal and those times seem to cause bigger issues and this morning it was almost in paste form instead of liquid. I know she's been having issues since this batch of med but it has gotten worse since this batch. Tomorrow is the day we can discuss with our pulmo and dietician about fixing her meds and feedings and praying it all helps and not bigger issues than just the reflux.

Night 2 and 3

Night 2 was good. James did the 12am feeding and I did the 3am feeding and Autumn slept all night.



Night 3 was a completely different story.

11:30pm-12:30am:slept with Autumn beeping

12:30am-3:00am-Fed Autumn, she threw up, started having high heartrate (no temp though), gave Xopenex treatments and CPT, still throwing up some, needing O2 all night

3am-4am-Slept

4:00am-5:00am-woke up again, started running low grade fever, more Xopenex and CPT

5:00am-5:45am-Slept

5:45-9:30am-WIDE AWAKE!!!

9:30-11:30-Autumn slept well and I was in and out of sleep

All day-Off and on low grade fever. Needed higher breathrate all day and fussy.

So, we are ready to see our dr. and get things figured out with her and ready to be back home so we can sleep once again. Only 4 nights left!

James' testing

Well, James was at his testing from 8am-4pm today. Everything went well and he will be back on Thursday morning for an interview. They are hiring 4 officers so hopefully we will get the job. After Thursday they have to work on his background check and then contact him in about a month for another interview. If they hire him then he will just have a couple of more steps to go through and then he will be moving here. Yikes! Me at home with all the kids scares me but I know I will get through it with my mom's help and the help of my nurses. Maybe it won't be too long and we will be living here as well. He also needs to go on a rideout while we are in town so it looks as though our upcoming week will be busy.

Tomorrow I turn 31. I feel old. I never imagined myself in my 30's and now here it is. Last year I celebrated my 30th here and just one short year later here I am again. My sister-in-law, cousin, and I have decided to go have dinner and maybe a movie to celebrate. James and I had originally planned a date night but since we came to Dallas early and have no nurse we both can't go out...so it will be just the girls. Back in June James and my brother went out since we were once again here and had no one to watch Autumn. I guess we need to get use to it....haha.

First Night

Have I mentioned how much I HATE our Dallas trips?! I feel like we can not move here soon enough. There is just so much loading and unloading and driving!

I do not sleep well while we are here either. I can hear every little noise change in Autumn's ventilator and it keeps me up. Also, we put Autumn on feeds every 3 hours around the clock (except 6am) and that's no fun without a nurse. Last night I went to bed at 11pm. Set my alarm for 12am to feed Autumn. Back to bed until 3am for another feed. After that feeding, Gage and I were sharing a bed and he tosses and turns ALL night long so I kept getting kicked over and over. Autumn decided to wake up at 3:45am and so I had to sit by her bed and hold her hand until 5am when she finally fell back to sleep. Gage then woke up needing to use the restroom. I finally got back to bed and then Autumn wakes up again at 6am. So, I turned her bed so she could watch cartoons hoping she would let me go back to sleep. I was in and out of sleep until 7:30am and then she was reay for me to get up. So, I'm sleepy today.

James slept in the other room so we would not disturb him and he could be well rested for his testing today. He had to get up at 6:20am (which for someone who does not go to bed until 4am everynight...it's a challenge). I also got up about 6:30am to make sure he was awake. So, he left early this morning and I have not heard from him since. Hope all is going well.

I did give Autumn a "big girl" bath in the big bathtub this morning. It's still a little too hard for her but it's easy to do it that way while we are here in Mesquite. I will post pictures and video of her when we get back home. She LOVED it though.

Today we are just hanging around the house playing...at this minute I have my nephew, Gage, my sister-in-laws niece, and Autumn while my sis-in-law ran an errand. Ages 5,4,3, and 1...lol. They are getting along so well and Autumn loves watching them play. Right now they are jumping on the bed (shh, don't tell) and Autumn is laughing at them. Don't worry Jen, I just made them stop...haha.

Will post more about our days as they happen and since I have lots of time to waste....;)

Trip

We are leaving for yet ANOTHER Dallas trip. It was going to be a 4 day trip but now it has become a 7 day trip. James will be testing for Rockwall and then we have 2 dr. appts. and then James may have to interview later on in the week. So, I will be exhausted by the time we come home. We are going to house search while we are there so I'm excited about that. Oh, and Gage is coming with us as well so this is going to be an extra exhausting trip. ;) I hope we have enough room in our car!

We are been having more hits on our house this week and will be having an Open House while we are out of town so hopefully we will get an offer soon and everything will all come together in God's perfect timing.

Spina Bifida Awareness Giveaway

Go to www.spinabifidakids.blogspot.com to sign up to win a SB necklace for a give away that another SB mom has set up. The more people she gets to sign up the higher her blog will be posted on google and the more info/awareness will get out for people who want to learn more information about SB. When parents are first told they are having a child with SB they immediately google it and see all kinds of negative information. A wonderful group of SB moms are trying to change this and we want to send out the positive message on how amazing our kids really are and hopefully prevent parents from wanting to terminate their pregnancies feeling hopeless and give them that hope back. Thanks for the support! Also, if you don't want the necklace you can always win it and give it to me (I would like Autumn's name on it please)....haha!

Videos

I like to post videos of Autumn every once in awhile so Nanny and other family members/friends who live far away can see her doing some of her newest accomplishments or just playing. Enjoy!

Testing

James got a call back from Rockwall PD and will be going in to test on January 15th. Whoo Hoo!!! A step closer to moving to Dallas. Please pray he'll get hired.

I have an 11 year old!

Yes, Madison turned 11 years old yesterday and I can not believe it. Wow, the time has flown by...I barely even remember her baby years. :( That means I will be 31 in just 10 days. I know that's not old but it seems so old to me....haha.

I really do not have much to report. We are just living life and staying on the downlow which we like. Autumn is getting so much better with her head control and sitting up. I've started a vent log to really see how much she is staying off the vent. She has some days when it's just an hour or less and then others that she's off a total of 4 hours. She really does frustrate me because she's never consistent with ANYTHING. I've been having other frustrations with her as well....she has stopped eating by mouth. Not sure why. Maybe because she's teething, maybe an ear infection, maybe aspirating and not wanting to eat, or maybe a shunt malfunction since she gags when she eats at times now. She's also vomiting after her tube feeds but that's not consistent either. Sometimes it's morning, sometimes afternoon, and once she did at night. I've played around with her prevacid to giving a full dose in the morning instead of giving half in am and pm. This keeps her from vomiting in the morning but not in the afternoon. We even keep her still for an hour after she eats but as soon as we start messing with her she vomits. This is why our weaning process is going slowing since we have to do it between feeds, therapies, and naps and that does not leave much more time during the day. I hope vent clinic will be able to help us come up with a plan and see what we need to do...I've run out of ideas myself. ;) But that is Autumn for you....everytime we get use to something and in a routine she changes things up...such a sweet girl.

Happy New Year's

I hope everyone had a fun and safe Happy New Year's Eve. James worked and I stayed home. My parents came over for dinner and played with the grandkids for awhile. Madison left after dinner and went to a friends house (yes, we are getting to that age). Sad since it was the first new year's (I think) that she was not around. Gage and I celebrated the new year countdown with New York time (he was ready to go to bed). It was so sweet because I told him people kiss at the new year so once it turned the new year he leaned over and kissed my cheek. I then went to give Autumn a kiss in her bed and then started crying. Last year it was so hard having her at the hospital so I'm just SO thankful for all of our "firsts" we get to do with her this holiday season. I have to admit I was a little bummed that I was having to stay home for new years and it was just going to be me, Gage, and Autumn at midnight....it would of been fun to be able to hang out with friends BUT I'm glad I it turned out that way. After putting Gage to bed, I spent some time with my Lord in His quietness and reflecting on these past 2 years and what is in our future. There is no better way to bring in the new year than a great talk with God and a peaceful night's rest. This next year I'm going to try really hard to lose all my "baby" weight...really it's more like stress weight but I say that every year and pack on more pounds instead so I'm praying this year I can stick to that goal. I'm also very hopeful with Autumn's progress and pray there will be NO surgeries in 2010 and that by 2011 she will be sitting up on her own and off the vent during the day and drinking by mouth. Those would be HUGE accomplishments in our lives if she reached those goals and I feel she can. I'm going to strive this year to just become more like my Saviour and to really take more time to teach my children more about God and give them the tools they will need to get through life. Well, off to get Autumn's morning routine going and get 2010 on it's way!!! Love you all!!!