The Winner is.....

Autumn!!! Autumn and I have been in a power struggle the past month or so over her sleeping patterns. I like schedules and I also like everyone to conform to the schedules I set. Well, I've slowly been learning that this lovely, laid-back little girl of mine has me a little blinded and that she also has a stubborn streak in her blood. Ofcourse she would because all girls in this household are strong-willed, independant, and stubborn and I guess she realized she better join the woman-power that rules this house...although James says he just lets us think we are in control but he really is...whatever!

Anyways, I would like for Autumn to wake up at 8am...nap between 1pm-3pm...and then go to bed at 9pm. Autumn would like to wake up about 9-10am...take a nap about 5-6:30pm...and then go to bed around 11pm-12am. As you can see this sleeping pattern does nothing to help me out. I'm up early to get the kids to school anyways so she should get up as well and most of her therapy session are at 9am. Late naps are okay since it is during dinner/homework times but the evenings Autumn gets a bath this gets to be a problem. Yes, I admit I am usually up until 11:30pm everynight BUT when we have no nurses I have to wait until Autumn goes to sleep before giving her nebulizer treatment (which takes about 20 mins) because if she's awake she dumps the nebs out or pulls the connection out of her vent tubings so this puts me into bed past midnight.

So, our battles go like this....I use to put her down around 12 or 1pm until she decided she does not want to sleep at this time anymore. I quickly surrendered with that battle and started laying her down at 3pm instead. Well, she will lay in her bed watching TV and FINALLY falls asleep about 5-5:30pm. I don't like her sleeping past 6pm so then we have to shake her, turn her, yell at her to get her to wake up...when she's out, she's really out. Gage does a pretty good job of waking her but she really hates being woken up to her brother climbing in her bed yelling to her in her ear...I don't blame her. She then fights sleep for about an hour or 2 at night and finally goes to bed about 10 or 11pm. Then there are the days when she decides she not taking a nap so if she's not asleep by 6pm we make her stay up (in hopes she will go to bed about 8pm). Well, she does go to bed around 9pm on these days but then she wakes up about 1am and stays awake until 4 or 5am. She also chooses to mainly do this on the nights there is no night nurse and daddy is working (fri/sat nights). At first I thought it was just from not having someone in the room with her but she has also done this when daddy or a nurse is here occasionally when she has had no nap...I think she's SO tired that she's too restless and cranky to even sleep.

So, after a month or 2 of this going on....I have finally decided to raise my white flag in the air and let her win this sleeping war because she's not giving into me at all! I decided I would much rather go to bed an hour later than being up for 3 or 4 hours in the middle of the night. ;) Maybe, just maybe she will finally have pity on her tired momma and decide to go back to her regular sleeping pattern someday soon.

Redefining Spina Bifida

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It's all about Layla...oh, and Kynsie too ;)

It was a very eventful Thursday for my household. I dropped off Layla in the AM for her TPLO surgery (Tibial Plateau Leveling Osteotomy) to repair her ACL. Came home, cleaned, and then my SIL took drove me to Ft. Worth so I could meet up with my best friend Tanya who was in town because her daughter was having a procedure for her acid reflux. Her husband had to stay home and I felt Tanya needed some help (plus gives me an excuse to spend time with her) and support with Kynsie. Oh boy, am I glad I went! It was dramatic..they put a nasalgastric tube down her and she was hooked to a machine we took home to record her acid reflux episodes. She threw a fit and kept vomiting afterwards so I'm not sure how Tanya was going to manage it all on her own. We headed home for them to stay overnight with us. She was happy once away from those mean people. ;) I called to check on Layla around noon and they said she had just woken up from surgery and to call back around 4pm to see if she needed to stay overnight or could come home. I was told beforehand she would have to stay overnight which had me sad to think of her laying in a cold, dark kennel all night in pain without her momma. We got home and I called right away and they said she could come home...yay! So, I picked her up along with her 3 different meds she has to take. She was not happy with me that evening and would not make eye contact but forgave me by the end of the night. ;) For the surgery they basically cut the knee bone and realign it and put in a plate to keep it stable. The huge part is the recovery which is 6-8 weeks of kennel rest with therapy. This allows cartiliage to grow back by resting and therapy is used to give range of motion back to the dog's knee.
I was shocked that Layla was actually walking and putting weight on her leg already which is not good for me. She hated her e-collar and her kennel so making her stay lying down on her bed is not so easy. So, it was like a zoo at my house...Tanya was carrying Kynsie around the entire time since she had the tube and machine and we did NOT want it coming out. I was trying to get Layla all situated and to stay still while also still doing Autumn's normal daily routine and Gage's homework. James cooked out for us which was helpful. Madison had a friend over as well. Tanya and I just kept laughing at how crazy it was at first but then by late evening it settled more.

Layla was doing pretty good except for wanting to walk around which would cause her incision site to bleed. I would get her all cleaned up and then she would go again. She HATED her e-collar and cried as soon as she saw me move her kennel into the livingroom. We tried a loosely wrapped ace bandage around the sutures to keep her from messing with them at night but that was not working either. I moved her bed and food into my bedroom to get her settled for the night. She finally ate a little but still did not want to lay down. She wanted to stand at my bed and stare at me to pet her. I decided to join her in her bed on the floor and sleep with her to keep her still and from chewing on her incisions. We both were up and down all night.

Today she's being a little bit more still for me as long as I sit in one place and put her bed next to me. She gets kenneled whenever she decides to walk around instead of sitting and resting. ;) Doggie Rehab starts today as well. I have to do stretching exercises, passive range of motion exercises, and massaging of her leg. She needs to be on kennel rest for 6-8 weeks and in about 2 weeks we can start walking exercises. So, the next few weeks will be lots of work but worth it to get her back to 100%.

Vent Clinic

Today was vent clinic day so that means Autumn always acts up. She does awesome until vent clinic days then something seems to happen like a major desat or allergies, etc. I was prepared to go in showing Dr. G how well Autumn is doing with her vent settings at night and for him to be so impressed that he lowers her setting down even more. Well, she was fine this morning (a little tired acting) but as soon as we get to vent clinic she start coughing, needing to be suctioned constantly, and having low 90 sats. I'm pretty sure it's just allergies (I was miserable sneezy ALL day yesterday) but they did do a trach aspirate and started her on Tobi nebs for 2 weeks, off 2 weeks, and then on for 2 more weeks. This will also help with the trach stoma secretions we have been dealing with off and on since before Christmas. She just does not do well when we leave the house except to go shopping...she does AWESOME on shopping days for some reason. ;) The weather has been rainy around here off and on so that could be a reason for all of her sudden issues as well with the coughing and sneezing. Anyways, besides that Dr. G was very excited to hear about all of her progress. She did lose about 3 ounces...weighs 20.5 lbs and grew 1/2 an inch so she's 30 inches long. Just 12 lbs and 8 inches smaller than Gage who is 6 1/2...haha I'd say poor guy but he has no issues with his size. ;) They want us to up her formula by 3 oz. a day to hopefully help get some weight gain. Her blood gas levels were good which shocked me since right before she drew Autumn's blood she coughed, gagged, turned blue, and went into the 50's. Typical Autumn ;) So, we did not get to move any vent setting since they moved them less than 3 months ago...Dr. G just kept saying how excited he was to see her progress and things are looking good.



I have seen really good improvements with Autumn this year. I think now that we have gotten her feeds fixed to minimize her gagging episodes during the day it has made all the difference. Everytime she does have a gagging episode she turns blue and loses some oxygen to the brain so the past few months she just hasn't seemed herself and falling back in developmental areas. Now she goes 4 days or so without vomiting and rarely gags unless she's got a cough (like today). She seems more focused on things and we are making some progress on feeding again...SLOW progress but it's progress. This is our year that we are really focusing on major goals...got my charts made and just have to get Autumn to cooperate in my plans. ;) Hard part is that she closes her eyes when she does not want to cooperate so it becomes difficult to teach her anything. I'm understanding now that some things are behavioral and not that she can't do it but that she's stubborn and just does not want to...I have NO idea where she gets that from?? Our biggest success this year is that she has tolerated her non-modified speaking valve for 45 minutes...it went from only 2-5 minutes to 45 minutes. She can make "ah" noises with it on and we can hear her cry. It's awesome! I'm very excited to see what 2011 will bring and praying this will be our first year to go surgery free for an entire year...hope I did not just jinx us. ;)

Oh, and Layla did tear her ACL and will be having surgery on Thursday. We opted for the major surgery (more expensive one) because of her weight...90 lbs..and feel it will give her the best chance to help her knee get back to its old self so she can be a puppy again. It's a super long recovery process...she will be on kennel rest for at least 6-8 weeks and fully healed by 3-6 months. She's walking with a slight limp and we have been keeping her activity level very low. She does not even know the pain she will be feeling in 2 days. ;( Her momma will make sure she is taken care of well and I will baby her as much as possible. ;)

I forgot to add that Autumn had her renal ultrasound last week and follow-up with her urologist. Everything looked great and still no cathing for us...at least for 6 more months. ;)

LOTS of pictures

I'm so upset because all of the pictures I took at James' family Christmas, Christmas Eve, and Christmas morning of Madison and Gage opening presents all got deleted at Madison's slumber party by one of the girls on accident. I got a new camera Christmas morning so all these pictures were taken with my new camera and I gave my old one to Madison. The above picture is my test picture using my new camera and it was the only picture I got of Madison in her matching PJ's..all 3 kids got PJ's that looked alike on Christmas Eve.

Below picture is Christmas afternoon after Autumn finally woke up and was ready to open her presents.

The only toys she was interested in was her DVD's and glitter ball. She likes holding her ball between her eyes or under her chin or rolling it on her face. This picture was taken after Autumn was done with presents...this does not even include the earlier mess that Madison and Gage made...I cleaned it all and then Autumn messed it up all over again. It took me some time to put together the house thing in the picture and what does Autumn want to play with? the door stop behind the Christmas tree...go figure I spent over $200 on her and she only wanted her $1 tree glitter ball and the door stop to play with.

Now skipping to our visit to Odessa. We arrived Sunday evening and Monday afternoon my BFF Tanya came by to visit us and below is her ADORABLE daughter, Kynsie. Monday evening we opened presents from grandparents and great-grandparents. Dean and Gage with their Star Wars swords(or light sabers if you want to be correct)..Madison peeking her head in the picture as well. Madison and her zebra snuggie Autumn enjoying her stocking stuffer....close up ofcourse This is my favorite part of the holidays....GAMES...we would try to get a few in each night and stayed up too late...this night we were playing Clue. Not sure what happened to my Tuesday night family gathering pics I thought I posted....my aunts, uncles, and cousins from my mom's side all came over for our Christmas gathering...we had a good time.

Wednesday evening we had Christmas with Grandma Roxane and Grandpa Mike (that is my ex-mother & father-in-law (Madison's dads mother). I'm so blessed to still have an awesome relationship with her. I had asked her if we could also do birthday cake for Madison that night and since Roxane always has to do above and beyond with everything she does...she suggested a slumber party with Madison's Midland friends and cousins. I was super excited to suprise Madison with this mini-party. I called one of my friends I've known since kindergarten to decorate Madison's cake (the kind she's always wanted) and she did an awesome job.

Thanks Kristy! Top of the cakeThanks to the Chesnut's as well for opening their home to us all while they were out of town. We always appreciate their generousity. Here are the girls roasting their weenies...later they made smores. The pool has a heater but it was NOT warm enough yet for swimming but the girls didn't care and went anyways....they didn't last very long. They also had a chocolate fountain We decided to come up with a scavenger hunt for them to go on...it was fun! These are the goody bags I got for the girls which ended up becoming the scavenger hunt prizes...because... ...these are the goody bags Grandma Roxane got with goodies inside along with Zebra pillows, Zebra mugs, and even had ordered Zebra snuggies (which got delivered a week AFTER the party) Told you things don't stay toned down with her. ;) Girls hung out in the dance studio above the garage...this is their silly picture. Grandpa Mike and Madison...he was the only boy allowedNana, Madison, and Grandma Roxane....2 great grandmothers who stayed all night to caperone the partyMe and my SIL being silly Oh, and we had banana splits and hot chocolate Much thanks to Grandma Roxane for throwing Madison an awesome 12th birthday party!!!

Skipping ahead to back home after the holidays and now it was my turn to throw a slumber party for Madison's friends here....I told her it was going to be a no-fuss, easy party because I was so worn out from our holiday trips.

Here's Madison with some of her close friends...I was just going to buy 12 cupcakes for her party but the store had none ready when I went in and since I waited until the last minute to get any...I made my own...they tasted good but the decorating was awful. ;)Presents!!!I realized I only took pictures of presents and nothing else during the party...I was busy entertaining and taking care of both Gage and Autumn since we had no nursing and James was working so I have a good excuse for slacking in the picture area. We had 7 girls stay the night, I put together another scavenger hunt for this party, we made cotton candy, decorated cookies, made snow cones, and played Sardines (kind of like hide-&-seek in the dark). I then sent the girls upstairs to entertain themselves and be quiet around midnight..the noise finally stopped around 1:30am. ;)

On Sunday we were blessed with SNOW!!! So, we (Madison, Gage, Layla, and I) bundled up and went out to play.

Madison posing for a picture Gage and I having a snowball fight. Layla LOVED the snow and would run all over and she loved jumping up and catching snowballs in her mouth. She had a little too much fun though and ended up tearing her ACL ligament and now has to have surgery. :( My poor puppy!

The snowman Gage and I made

And this is what daddy did while we were in the cold playing...all snuggled in the warm house...I even made him hot chocolate when I came in...shouldn't he of had that all ready for me?...I think so! He's so spoiled and does not even know it! He did take care of Autumn so I could make great memories with my son. ;)

Our Holidays

I hate to say it but I'm SO glad the holidays are over. Christmas was exhausting and emotional for me this year. We started off going to Austin before Christmas for 2 nights to celebrate with James' side of the family. Autumn started doing bad on the trip there. I did not have extra nebs since she rarely needs them and we were having to use oxygen which is also rare. I was stressed about those things and then Autumn was up every night from about 1am-5am and I was having to do CPT on her twice an hour and nebs every 2-4 hours. Besides her issues, we had a good time. We got back on the 23rd and the 24th I had my brother's family and cousin Steph over and we ate, played games, and exchanged gifts. Autumn was doing better (no more fever). Christmas morning Autumn slept for over 13 hours so we did presents without her. She opened presents that afternoon...well, Gage opened them for her because she had no interest in doing it. I was bummed that evening because I just feel Autumn has regressed with her development. I just thought by her 3rd Christmas she would be into presents and toys but all she cared about was the glitter ball from the Dollar tree she got in her stocking and playing with the door stop. I just hate she can't sit up to play still and has such a long ways to go. I was giving myself a mini-pity party. On the 26th we left for Odessa to visit my side of the family. Autumn was doing better for this trip but our oxygen tanks were leaking and I was worried when we got down to only 1 large tank and 1 small tank to last the rest of the week. We had a good time but I had just been so tired from the traveling, worrying about Autumn, getting things together for Madison's surprise slumber party and just was feeling down and depressed. I was getting to the point where I just wanted to run away and get a break from it all. Autumn's needs NEVER stop and when we are traveling for 2 weeks, without nursing, and she's not feeling 100% it just all adds up and feels like too much to handle. The last night we were in Odessa, Autumn started getting green secretions around her trach stoma so that was another added worry but we called the dr. and he said as long as there is no fever and we are not suctioning green secretions then we would be okay until Monday to get it checked out. Don't get me wrong, we still had a great time with the holidays but I have to admit my heart was just so heavy the entire time that I was just ready for it all to end. We managed to give Madison a slumber party while in Odessa with her cousins and old friends. Her grandma Roxane went ALL out and it was a fabulous party! I was so ready to be home on New Year's Eve and settle back into our normal routine. I finally got some rest and dug back into God's word which just showed me that I was back to my old habits of relying on my own strength and just not trusting in His to get me through things. I felt renewed and was ready to stop feeling down and depressed and to start feeling positive about things again. Everytime I start worrying it's just because I am not trusting God to take care of all my needs. So, to wrap it up....Autumn's stoma is looking much better and I'm starting to see more positive changes in her. She's sitting up a little better and interacting with us and focusing on things much better now. Prayer is so powerful and I can't believe I just "forget" about it at times. Madison had a 2nd slumber party and I think the girls had a great time. ;) I will post some of our highlight pictures of the past 2-3 weeks later. It also snowed here yesterday and Gage and I had a blast playing in it. Layla LOVED the snow as well but injured her knee...she would not bear weight at all yesterday but was doing a little this morning so I may watch her but if not better by this afternoon she will get to take a trip to the vet. I just hope she did not tear her ACL...would be an expensive surgery if so. Last night she could barely get up by herself and would yelp everytime she stood up...my poor puppy.