Friday night update

As I sit next to Autumn's crib waiting for her to fall asleep I thought I would give an update on our past week.


Monday: I took Madison, her friend, Gage, and Dean to the Dallas Zoo. Aunt Jen stayed home with Autumn because her allergies had been bad the past week and I did not want to get her outside all day and make it worse. It was SO nice to get outdoors and do one of my favorite things....I always wanted to be a zoologist, marine biologist, or animal trainer..I just have that passion for animals and could watch them all day long! After the zoo, took Gage to gymnastics and went grocery shopping. Oh, cute story: Gage asked me where his present was. I asked what present? He said that I had said that Monday they had no school because it was Presents Day lol...I told him no, I said President's Day and had to explain to him what that was. He was disappointed. I laughed so hard...poor guy!


Tuesday: New day nurse started. I liked her and think she will do well. She worked Autumn all day and wore her out which was good. ;) Autumn had PT and speech that day also. I also got started on getting my stuff ready for the JBF sale (it's a consignment sale for baby/kids items that comes twice a year...it's a great way to get rid of stuff and make a little money to shop for more stuff. ;) Took Madison to middle school orientation that evening...left with a huge headache that lasted for the next 24 hours.

Wednesday: Autunm had OT, which I bailed on & let Aunt Jen sit through while I went and did some coupon shopping. Spent the rest of the day finishing my JBF sale stuff and watching American Idol with the family

Thursday: Clean my SIL's house..made some cash. ;) Came home to clean some of my house. Madison and I made some Chocolate Coconut Bars for a Chocolate Festival we were going to be attending on Friday. Had more American Idol family time.


Friday: Cleaned the rest of my house..actually got most done on Sunday & was able to maintain a semi-clean house all week. ;) Parents arrived into town. Yay! Took Madison to the cardiologist. Her pediatrician discovered she had a heart murmur back in August so I finally got around to getting her in. I was not impressed with the office at first because before the nurse even talked to us about anything she made sure she got our $1,207 payment. They just were not kid friendly for a pediatric cardiologist. She had an EKG done and then an echocardiogram. He discoverd she has an innocent murmur that is not and will not ever cause any issues. She has a very healthy heart! Her blood pressure is high at times but I think it's from how nervous and worked up she gets for dr. appts. but they want to do blood pressure checks at home for a week to make sure. We will start that in a couple of weeks. Came home..made another batch of the chocolate bars...visited with family. Madison, Steph, Jordyn, and I went to the Chocolate Festival for mothers and daughters at our church. We were to make a dessert to be judged and eaten by others. We ate TONS of chocolate, watched games played with desserts, and had a great time just being out of my house on a Friday evening for a couple of hours. ;)

Tomorrow is my nephew's birthday party and then the rest of next week my mom will be here to help out so we will be SUPER busy. ;) One week is not long enough but I will take what I can get.

Answered Prayers

God has decided to answer a few prayers for us this week.

Prayer 1: HELP!!! I've been overwhelmed and need of a MAJOR break lately and so my mom decided that next weekend when she comes down for my nephews birthday she will stay a week with us. Dad will have to make 2 trips but he says he does not mind. Mom is going to give me a mini-vacation and help clean my house and take care of my kids. I do have the best parents on Earth...I admit they are even better than the parents my kids have. ;)

Prayer 2: We have been without a day nurse since the beginning of December. I met a new nurse today who will be starting Tuesday. She will work Tuesdays so that my SIL and I can hang out without children. We can have adult conversation, do coupon shopping, fun shopping, get pedicures, have lunch,work on house projects, do scrapbooking, and just about anything we want for a full 6 hours each week. This weekly break was so good for me and I have really missed it. I've learned it's something I need to refresh myself for the other 6 days of the week. The nurse actually works at the hospital that we go to for vent clinic and where we learned to care for Autumn's trach needs so she's with trach kids all the time and knows how we were taught and knows our drs. well. I felt instantly comfortable with her so I really think she will be a good fit for us.

Prayer 3: Some nights are really rough for Autumn. Yesterday she did not take a nap and she was beyond exhaustion by bedtime. She HATES to sleep and fights it. I video taped it but it's too dark to see well. She does everything possible to keep herself up. She rocks, she flip flops from one end of the bed to the other, she waves her arms, she sits up over and over, she shakes her head, she runs her hand across the bed rails, she grabs her ambu bag and puts it to her ear and squeezes it over and over, she take my hands and has me rubbing her face, head, or patting her back, she messes up her blankets, and if she starts to doze she will pull her vent tubes off to wake her up. At times she looks like she's having a seizure just by the way she acts...she does this until her body is so tired and her eyes can no longer open up. I try to calm her and hold her still but she just gets aggitated and does not want to be touched at times. She doesn't always do this at night but the nights she does it is hard to watch and not be able to comfort and calm her. She does not like to be held or rocked when she's this tired. So, last night we went through this for about 45 mins...I would sing to her, lay her back down, try rubbing her, hold her hand, leave her alone and just sit by her bed. Finally (why I resort to prayers in the end and not the beginning is beyond me) I decided to pray over her. As soon as I started speaking aloud to God she got still. I had been rubbing one of her arms while she was waving her other arm in the air. But instantly her body stopped moving. I asked God to relax her body and slow her mind down. To close her eyes and give her peace and just let her little body rest. Literally she was snoring in less than 30 seconds. Wow! I love when God reminds me that He's always listening to me. There are those prayers I pray when God's answer to me is not now and that I must wait but then there are those that he's ready to give if I would just think about asking. Thank You God for all these wonderful answered prayers and even for the ones you are making me wait on for your perfect timing. You are always true and faithful to us! I love how you remind me of your power during my times of doubt. It's awesome to be your child...thank you!

Snow Day #5

Last week it rained ice and snowed so the kids were out of school for 4 days. It cleared up and warmed up a little and then this morning it decided to repeat last week and we had another snow day. I was in my house for an entire week..with all 3 kids and the husband...and I survived. I think God gave us a couple of days break so that we would all live and remain sane. ;) Here are some pictures of our 7 days of being homebound.

Gage played video games almost the entire time...Autumn has discovered sitting up is more fun than laying down and has been working on doing it more. This was one of our bad hair day mornings. We stayed in our PJ's ALL 7 days (we did bath & put fresh ones on every other day or so). We don't fix our hair when wearing pajamas or jamama's as Gage calls them.
Sisters did lots of cuddling together

Autumn and Layla laid around.

Autumn sitting up to watch TV in her room.This was the day we actually got LOTS of snow...I was so excited the kids had an excuse to go play outside and my house was quiet for a couple of hours.

I decided to put Autumn in this booster seat to work on her sitting and core control. About 3 months ago she was not even able to sit in this seat WITH the tray on because her core control was so poor. Now she's able to sit WITHOUT a tray and when she falls forward she can push herself back up into a sit position. I'm so proud of her! I posted a video of her sitting on my facebook (could not get it to load on my blog for some reason). She also has a snobbish personality and will NOT look at us when we talk to her and rolls her eyes. It's cute and frustrating at the same time. That is also the reason why I rarely have good pictures of her anymore..she refuses to smile and cooperate. Her sleeping patterns change constantly...she went a few days having her days and nights mixed up and now she's back to the schedule she likes but it's always changing. ;) She is gagging less and rarely ever vomits anymore. She breaths out of her nose and mouth while sleeping and it sounds her alarm and drives us CRAZY! Right now she's on her unmodified speaking valve...the one where she can inhale through her trach but has to exhale out of her nose/mouth...she's been on for almost 2 hours and still sitting at 100%. It's a good day! Well, better get back to being unproductive. ;)

Spina Bifida Kids: Give Love

This post was listed on the Spina Bifida Kids blog I read daily and wanted to share it with others: Click on the words below to access the blog.

Spina Bifida Kids: Give Love: "(I'm posting this on every blog I have access to...because it's important...because I want to reach as many people as possible...and because..."

Snow Day

Well, we had a snow day today so I thought I'd take the time to give a short update. Autumn has decided to once again change her sleeping pattern since last week. She's decided she would now like to skip her evening nap and instead wake up super early in the morning and then go back to bed around 8am for an hour or two. Okay, whatever she wants but she's not going to like when I make her get up on therapy mornings. ;) She's been doing really well this year so far. I think this will be a year of seeing huge improvements with her. She's really wanting to learn how to get on her knees and rock back and forth...she practices this all the time on her own but has not gotten it down yet. She also is wanting to sit up more on her own when on the floor instead of being content laying on the floor to watch TV. She's getting stronger and I know by the end of the year she will have the sitting ALL by herself and getting on her knees thing down. When she wants to do something she works hard for it but if she is not interested then there is nothing you can do to make her work. It's hard for me since I like to control things but I'm learning I have to just let her do things in her own timing. Really she does her own physical therapy most of the time...it's the fine motor skills and feeding she HATES!!! We are making progress on eating though...we have now accomplished giving sweet potatoes from a spoon and most days she eats without gagging or spitting it out but still fights when you feed her so I have to be really fast with the bites. I think now that we finally found a food she can handle we are going to stick to it until she actually wants to take bites and then slowly add other tastes/textures with the sweet potatoes. I finally got over the frustration of what she use to do and what she's not doing now with eating food and decided to quit looking at the past and start setting new goals for the future. I have fixed most of her gagging/vomiting problems but we still have our bad days here and there. She's being fed most all of her food at night while sleeping and then gets 12 ounces throughout the daytime. It seems to be working the best from everything else we have tried so far. Autumn also has been tolerating her non-modified speaking valve ever once in awhile so I'm excited to make progress with that and hear some little ah's out of her and a quiet laugh every once in awhile. She's also breathing more through her nose and mouth when she sleeps..this makes our vent alarm though and does not give us a pleasant nights sleep so I'm waiting for our dr. to call us to see what changes we can make when she has a good night like this so we won't have to hear vent beeps all night long. Autumn has decided she does not like her vent on anyways. Last night she pulled it off and when I grabbed it she was pushing it away from her and trying to push it out of her crib..so I turned it off and let her watch the rest of her show without it and just waited until she was almost falling asleep to put it back on. ;) We met a new nurse that may be picking up our Saturday nights so I am excited about that so we can get back to church. We will also be meeting another new nurse this week who may be doing a weekday shift for me as well.

Layla is doing great in her recovery. Actually, a little too good and wants to jump, run, and play. We try to keep her in her kennel but it's so sad seeing her lay there all day bored so she's out way more than she should be. I also should still be taking her on her leash outside in the backyard but I really don't have time for it so let her out on her own and then she takes off running...bad dog. Hopefully despite my giving into her, she will heal well. We go back in March to get an x-ray to see how thinks look.

I took the 2 older kids to the dentist yesterday. Everything looks good. Gage has still not lost a tooth...I think he may have my genes and if that is the case he will have to get most of his teeth pulled by the dentist. ;( At the end of last year we were told by Madison's pediatrician that she has a heart murmur and we should get it checked before she gets into high school just to make sure everything is fine. Well, I did not know if you have a heart murmur that you have to take antibiotics before getting your teeth cleaned so Madison was not able to get hers done. So, we will be back next week for her teeth cleaning and she will get a tooth pulled. This should be VERY interesting since she's my drama child...you have no idea what I go through for a simple check-up with that child. It's always a draining experience for me..she's a one of a kind child that is for sure. ;) I guess I will stop putting off the visit to the cardiologist and go ahead and take Madison just to get it over with and make sure everything is fine. I guess my update was not so short but when do I ever give short posts? ;)

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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