Autumn playing on the floor

I wanted to get a video of Autumn rolling all over the place but once I got the camera out she stopped. Go figure. I did get video of her pushing herself up and playing with brother though. She's getting so big! She's been doing great off the vent lately...about 5-7 hours a day. Also when she took a nap this afternoon I forgot to move her breathrate from 6 to 20 and she did not beep one time. Yea!

We've started giving her enemas daily now to help her out. Everytime we start something new I get another hit of reality about her special needs. I worry she will struggle with her bowel/bladder issues her entire life and will never be "normal" enough to live without it being a huge issue in the future. I just worry about once she's school-aged that she will always be in diapers and have that issue to deal with and getting teased by peers. I know once I get to that point it won't seem as hard or scary or maybe not even a big issue but these are just some things that cross my mind often. Tuesday we will find out the results from all her urology tests and hoping they are all good and cathing will not have to begin.

The training has started with my SIL and she's getting it down so quickly. We are going to test her out after a couple of weeks and leave her alone with Autumn. All we have to left to train on is trach changes. She changed out Autumn's button today and got trained on the vent. She already pretty much knew how to suction and deal with desats from being around us so much. It's a huge burden lifted off my shoulders to know another family member can be left alone with Autumn. Maybe James and I can actually get away for a weekend in the future. ;)

Nursing is going better this week. I just have to leave the room once they get here and not go back in so she will not start crying again. It breaks my heart but she's only up for an hour or 2 before going to bed so I guess I can manage to be away from her for that long each day. ;) We are going to start slowly going from 7 nights a week to 4 nights eventually but first I want to see which nurses I want the most and see who wants to stick with us as well. The nurses are also learning to leave her alone at night so she will not wake up and sleep in...some do better at this than others.

We start therapy sessions this next week and it looks as though we will have 2 sessions every week. PT each week and alternating OT and Speech every other week. So, Autumn's schedule will remain busy like always. One great thing is that the WIC office here can not order Autumn's formula so I can now stop going to those stupid meetings and get her formula through our equipment company again. Thank goodness because it was always a pain to have to get bloodwork from Autumn, go to the hour long meetings, and then pick up the formula when it would come in. Now the company just delivers her formula to our house each month. I get excited over the little things that make my life easier.

In a couple of weeks we have a consultation with a new pediatrician so hopefully that will go well for us and our new pedi will be just as great as our old one was but I doubt it. Okay, I think I've made this post long enough...can you tell I'm bored on a Friday night? I wanted to go bike riding but Madison and I are sharing my bike and she took it out with her friends...I think it's time to take Madison bike shopping so I can get a much needed workout.

Our new home

These pictures are in a completely random order. :)

Had to add a cute picture of Autumn ready for her first wagon ride

(she would not keep the glasses on though) Autumn's room

(before decorations)

View of our 30-acre lake from our garage
(too bad one day houses will black our view)

Backyard

(Kids love to play in the open field and James likes to hit golf balls as well)

Madison's room

(still no decorations added just yet)

Gage's room

Master

Not sure what to do with all the extra space..I want to move Autumn's crib into the room but James disagrees ;( There is a treadmill on the other side which takes up some of the space.

Playroom

(this will be a fun room to decorate and organize eventually)

Kitchen

LivingRoom

Front of house with actual grass, shrubs, and trees

I've unpacked all the important boxes and organized most of everything. Just need to decorate walls and playroom to be complete. I do have tons of boxes left in the garage full of junk I'm not sure what to do with or where to put anything. I gained 1,000 sq.ft. and no room for it all. How does that happen?

Today was our first FULL day as a family and it went well. I cleaned ALL day and still am not done with the first full and have not even started upstairs yet. Madison missed waking up and catching the bus this morning so I got to wake up one cranky little boy and loaded up Autumn and all her equipment so we could drive Madison 4 minutes away to her school. I'm not sure what to do about nursing. Autumn is not adjusting well to them and I've been up until past midnight the last couple of nights and up at 6:30am. She just cannot rest with them in the room and wants only mommy to sit with her. I'm getting less sleep with them than I was without. I also found out a couple of the nurses had given Autumn her morning meds when they were not due until 9am and then I gave them as well. Sheesh! I'm use to my old nurses who just did as I asked and nothing more and I did not have to explain every little reason why I'm doing it this way or that way. So, James and I will be discussing what we want to do. I personally want to just get rid of night nursing all together but he thinks I need it. Whatever. Anyways, maybe we will compromise to only 4 nights a week like we were use to...I don't know...I just want to take care of my child myself. I did it for 6 weeks 24/7 so if I just can get a little day nursing break that would be enough for me. Well, off to get ready for bed...tomorrow we have a 4 hour dr. appt. that I'm not looking forward to.

Time for a detailed update

I still can not find my hook-up to download my pictures from my camera to my computer so that will have to come later. I'm so thrilled with the house and all my fears went away about it as soon as I walked through the door on Friday. The rooms are bigger than they looked when there was no flooring down and there is plenty of room for the kids furniture and still have floor space to play. Yea! The house looks just beautiful! James and I were outside this evening watering the new sod and trees and I told him that I never thought we would live in such a beautiful home. God has really blessed us after all these years of watching every little penny we spent and trying to always use His money wisely. He is faithful!

The first evening Autumn just sat in her highchair in the livingroom watching us all going back and forth unpacking for hours and never fussed once. She seems to love her new atmosphere. My brother's family and my cousin and her daughter all came over the first night. My cousin's daughter stayed the first 2 nights with us and then Saturday all the girls went to a fun night at a gymnastics gym and I had all 3 girls that evening and then Sunday night the girls went with my SIL (sister-in-law) while my nephew spent his first ever night with his aunt. One of the most exciting things for me is to be living so close to my niece and nephew so they can stay over whenever they want (just wish my other 2 nephews were closer to do the same). Behind our house the lots have not been built yet so there is a small creek, lots of open land with green grass and trees and a 30-acre pond. The kids had a blast exploring around and we can see them from the windows in our livingroom overlooking our backyard. The bad thing is ALL the clay-like mud they brought home with them and trying to get it off the shoes. I am going to find some great play shoes for all the kids that can stay muddy and outside. ;) My dad, James, and brother spent the day installing fans and other things I needed in the house while the girls unpacked boxes.

Monday my SIL watched Madison and Gage while mom and I took Autumn to her first dr. appt. We left the house at 10:30am and got home about 2:30pm and saw the dr. for only about 5 mins of that time but at least it was not a 6 hour drive this time. ;) As soon as I got home I had enough time to eat before the new equipment company came to deliver our new supplies. So far they have been great! We even got 2 vents so now I can keep one upstairs and one downstairs so Autumn is not stuck on just one floor. Just before they left the nursing company guy came to do his paperwork with me. So, by 5:00pm we were done with all that and then that evening our night nursing started. I had gone 6 weeks without night nursing and a month without day nursing so I was dreading going back to using nurses but James was making me. The night before though I was stuck sleeping in a chair by Autumn all night so I have to admit I was ready for a full nights sleep. Our nurse seemed nice and confident and I felt comfortable with her. I kept waking up at night though thinking it should be morning already since I was not use to having so much sleep. ;)

Tuesday I enrolled Madison and Gage (for next year) into school. The school is only 3 years old and HUGE. All the staff were nice and they had 2 girls from her class come get Madison and show her a tour of the school. Afterwards, James and I headed off to vent clinic with Autumn. It was a very good clinic. They went down on her vent settings and daytime breathrate. Her dr. said her CO2 levels and chest x-rays were perfect. We will continue to wean as she tolerates and they are getting an oxygen adaptor we can put to her trach so she can have O2 as needed without having to put her back on the vent when she has her desats. We came up with a plan for getting her off continous feeds over the next 2 months and then going to get her enrolled into a outpatient feeding therapy (located right here in Rockwall) to help her start feeding by mouth once again. They were pleased with her progress. She sometimes is off the vent for up to 5-6 hours at a time. Made it home about 3:15pm and heard ALL about Madison's wonderful first day of school and then the doorbell rang with her new friend already visiting. This girl is in her class, rides the same bus, and lives in a home with the same floor plan as ours, and has pink/zebra bedroom which Madison has a purple/zebra bedroom. We actually almost picked the house right next door to her but since it already had carpet we chose this house instead. So, Madison already made friends and LOVES her new school. I was worried about her but I think this is really going to be the best thing for her as well as Autumn. Today after school she had 3 girls over and they played from 3:30pm until I finally made Madison come home at 7:00pm. They just go from house to house and explore the neighborhood and play with all the kids. We LOVE this neighborhood so far...VERY quiet but maybe that's because we are the only ones on the street?? haha We do have neighbors moving in across the street that we met this evening.

So, things are going good...mom and I went shopping today and spent too much money on house stuff and not even close to being done. I have not been able to unpack much so hope to get more done Friday and Saturday before mom leaves on Sunday. Tomorrow we have a 7:45am appt and a 3:00pm renal ultrasound so that stinks we will be gone all day since the appts. are so far apart but one is SB clinic so I hope we can get some more done with knowing what direction to go with Autumn's therapy and other stuff. Tomorrow evening my brother will be over with his kids and this weekend will probably be a full house again but I am enjoying it. Well, better get some rest since 5:45am will be here sooner than I want.

We have internet

Hi all! Well, this will be a short post since I need to get to bed. We have internet now. YEA!!! We are getting settled in but I'm not getting too much unpacking done with all the other things I have to get done this week but eventually it will be organized. Madison started school today. (Story about that later) I have taken pictures of the house to post but can not find which box I packed the cord to transfer to my computer. (pictures to come later as well). Autumn has been having dr. appts and night nursing again (update that later as well). So, this is just to let everyone know we have arrived and are trying to get settled in and I have LOTS to tell once I actually get a second. Autumn though started running fever this evening so praying she will be ALL better in the morning so I can go shopping on the one day daddy is off that we do not have dr. appts and we don't have to take her in to a pediatrician that we do not even have yet. ;) It's late and I need to go to bed so I will give details as soon as I get a chance.

Overwhelmed, tired, and stressed out

Great way to start a post huh? All I really need to say is that I have been homebound for 11 days with both Gage and Autumn. I've been outdoors twice in the 11 days..one on a walk with the kids and one to load up my van with boxes. I've gotten dressed only twice. We are bored and tired. Autumn's desats are becoming less frequent as her nose is clearing up however she's still not sleeping at night. I think she may have an ear infection from all the drainage just because she wakes up crying. No fever and no seizures yet so not positive if that's waht it is. OR it could be that she's just WAY TOO spoiled now and wants mommy sitting or standing by her bed all hours of the day and night. We can be holding her but talking to someone else or watching TV and not paying attention to her and she pulls her vent off for attention. Very demanding little girl who is so use to the world revolving around her. I've realized she's not as cute smiling at me in the middle of the night when I've only have an hour of sleep. She also only took a 30 min. nap today after keeping me up from 1am-4:30am last night. I can not wait to hand this child over to her daddy on Friday. Thank goodness Nana is around to give me somewhat of a break to at least get out of the room at times. I was doing good the first 8 days but these last few days are just draining me.

I've been spending the week packing up things here and calling people to change addresses and TRYING to reschedule some of Autumn's dr. appts but no one wants to call me back even though I've called half a dozen times. So far our schedule for the first couple of weeks in Rockwall are going to be busy. Autumn has 5 dr. appts scheduled so far and still needing to schedule 2 more. Have to get to the WIC office to re-order her formula for the month of May and need to get Madison registered at her new school. All this while needing to unpack a house, meet with the equipment company, nursing company, and ECI to get her therapy going again. All I want to do though is relax and enjoy our new house and not have to worry about anthing else. You know I'm really sick of my life consisting of driving Autumn to appt after appt..it's my full-time job now and I wish it's one I could quit at times. When will these appts. slow down? I hate having to put Autumn through them all as well with getting blood drawn, radiographs, ultrasounds, and all the other types of tests they run and waiting for hours at some of them. I also still need to find a pediatrician when I get there as well. So much to do. Yuck!

Okay, I'm done venting now. Gotta go do trach care and give meds and get Gage's bath done before Survivor comes on. ;) Also...Gage and Madison are in a screaming fight so I better go referee. Oh, the life of a mom!

Edit to post: 7:00pm and just realized it's Wednesday and not Thursday...my evening is now ruined..haha. I even cut Gage's hair all in time to sit down to relax to my favorite show. *sigh*

Prayers

Just wanted to ask you all to be lifting Autumn up in prayers. She started becoming really congested this week and I've been aggressive with breathing treatments. For the last 3 nights we've been up in the middle of the night getting CPT, Xopenex, Pulmicort, and Tobramycin. Well, the congestion is much better in her chest but now she's got a stuffy/runny nose that is driving her crazy and she just wakes up crying...at least I know she's breathing more out of her nose since it bothers her now. Anyways, she's also been having a lot more frequent apnea episodes. Reminds me of when she was in the NICU. Since the nissen surgery she can not vomit so now she gags and drools and then desats on us. She was doing this a couple of times a day but no major desats. Now, she's having about 5 a day where she turns blue and once she even went down to 5 which has not happened since NICU days either. I'm not sure if it's related to this cold or if it's reflux still. She also drops in seconds but comes back up within seconds of getting oxygen. My child still smiles even when she's all blue and coming back up....when she's down she's disoriented though. She has not been able to get off the vent for 2 days now but I was able to get her breathrate back to 10 today for a short time. She was also on oxygen for 2 nights but last night did okay without. So, I feel we may avoid any infections and going to get rid of this cold soon but still need prayers she gets back to 100% soon. It always seems like something sets us back. I've been going on about 3-4 hours of sleep a night and having trouble sleeping even when Autumn is not beeping so please pray for my mind and body to rest as well.

Sisters

Oh Brother!

I guess Gage was bored one morning and decided to decorate Autumn with stickers. She's smiling for the picture but she was not happy with him while he was decorating her up.

We have been pretty lazy this past week. Everytime I come back from a dr. trip from Dallas it always takes me a few days to get caught back up on rest and with us staying in the hospital this time I was more tired than usual. Autumn is on continous feeds right now and I am not sure what to think about the surgery just yet. She can no longer vomit but she gags now instead and then desats from gagging. So, not sure if the surgery has shown us mouch improvements. She does not gag or desat as much as she did when she would vomit but she only gets 32 mls an hour so I would think it would not bother her acid reflux much. I'm wondering if it's just from always having something in her belly that is making her gag but hopefully it will get better with time. We go back to the GI in a few weeks so we'll see. Her stats though are much higher and she is doing very well off her vent. Only if she coughs/gags will see desat. Even at night her stats have been higher. I am thinking when we go back to vent clinic we will see about just having her hooked up to oxygen as needed during the day because I don't think she needs her vent anymore.

Tuesday Autumn had her 18 month check-up. James had to work and mom took Gage to gymnastics so I was left to take her alone. Our nurses have already found other jobs so we have been going without for a few weeks now. So, I loaded her up and off we went. She did awesome! No desats in the car and I got her all unloaded just fine by myself. Her check-up went good. She weighs 20.15 pounds and is 29 inches long. (Gage and her are now wearing the same size shorts and only 8 pounds difference and he will be 6 next month...yikes!) They asked the 18 month developmental questions. Besides all the physical questions, she is just about on for an 18 month old congnitively. The only thing she does not do is point with one finger or clap her hands or talks of course. She can point to her body parts (hair, ears, eyes, nose, mouth, tongue, tummy, hiney, and toes). It's cute watching her reaching for her toes and pulling her sock off. She responds to people, names, and understands demands and mimics us. She also is starting the separation anxiety, knowing who's a stranger and temper tantrums. Yes, my sweet baby girl is becoming moody. I try to tell her that the world does not revolve around her but let's face it...our lives do and she knows it. ;) Anyways, the rest of the appt. was fine and she dosed off on the way home. I was pretty proud of myself so being able to be independent with her again. Having my independence taken away has been my biggest struggle and it feels nice to get some of it back.

Wednesday was Gage's last day of school and his Easter party. We took him out so we would not have to pay for the month of April since we are leaving in the middle of it and with James being gone..it's too hard to get him back and forth to school with me being the only one able to take care of Autumn and to rely on mom taking and picking up the kids daily. Our closing date was moved to April 16th so we have 2 weeks until we move. YEA!!! I just about have everything in place so I'm ready to get down there and settled in. I guess that is all that is going on here...update when have more news or something half interesting to talk about.