Spring Break

Spring Break was full of activities. Saturday the Bedrick family came over to visit for a couple of hours while they were in town. It was so nice to see them again..Tanya and I have been friends since 5th grade and it's so fun to see our kids play together now and I wish she would move here. About an hour after they left my cousin arrived to stay overnight with us. We actually made it back to church Saturday evening...oh, how I missed it.

Sunday I offered to watch my cousin's daughter, Mya, while she went to Six Flags to be a kid again. ;) We played and played. I did think about how it would be if Autumn was not disabled...it saddened me because Gage had such a great time playing with Mya but it was also nice not having to deal with toddlers fighting over toys and chasing and picking up after 2 little ones. ;) I decided to give all 3 kids a bath together that evening. They had a blast!

Autumn LOVES her bathtime and laughs when she splashes

Monday morning Autumn had physical therapy but she was up in the middle of the night so she was not ready to wake up early. I was able to get her all dressed and fix her hair while she slept.

After therapy I took all 3 kids to the grocery store...it was the first time Autumn has ever been in a grocery store and for me to take all 3. Madison pushed Autumn in the stroller while I shopped. It all went well except that I spent $100 more having the kids with me picking out things.

Since the shopping trip went so well and Madison was being a big help and in a good mood (this a rare with Madison) I decided we would join my cousin and go to the Children's Aquarium in Dallas. This is where our week of line standing began. ;) The line to get in was only about 15 mins. This was my first time to this aquarium and it we had a great time. It was small but fun.

They have a Stingray area where you can touch the small stingrays as they swim by and the kids loved this. I did too but had Autumn in one hand so I could not participate long. They also have a great shark tank with large stingrays as well. Autumn really enjoyed the aqaurium and loves looking at the fish swim around...I think it was her favorite activity of the week. I think it was mine as well. I wanted to be a marine biologist, zoologist, or animal trainer when I was younger but my life took a different direction when I became pregnant with Madison. I become a kid again at these places and could go to them everyday and not get tired of them.

My cousins, Kyla and Mya at the aqaurium with us

Tuesday I had a day nurse so Madison watched the other kids so that Jen and I could
go get pedicures. It was so nice to get pampered. Later that afternoon we all (my 5, Jen plus kids, and Jordyn) headed off to Six Flags for the evening. Wow, it was SO crowded! The kids each rode about 3 rides in 5 hours.

Dean (my nephew) kept making Autumn laugh.

Madison, Jordyn, and Haley

I forgot to add the picture of us up in the Oil Derrick..James and I took Gage, Dean, and Autumn up and they loved seeing all the night lights of Dallas.

Wednesday we planned on hitting the zoo but heard how busy they are on Wednesdays so we decided to take a day of rest and wait until Thursday for the zoo. I'm glad we waited because Tuesday wore Autumn out and she decided to let her ventilator do all her breathing for her that night.

Thursday we were all rested up again and headed to the Fort Worth Zoo. It was STILL insanely busy. Crowds take away the fun of the zoo because we stood in line to see each animal. Autumn was only interested in keeping her stroller hood over her to block the sun and cared less to see any animals. It was Saint Patrick's Day so we were all in our green except for Madison. We took a couple of pics but did not get more because even to get pictures would be a line. It was crazy!

Friday we packed up a picnic lunch and headed to the Dallas Arboretum. It was so beautiful and also crowded. They had fairy tale castles for the kids to play in and all the tulips were in bloom. We found a secluded spot with shade to have our lunchAutumn and I hanging out while the other kids played in the playhouses. Poor Autumn is never in the sun so her eyes are very sensitive and she keeps them closed when outdoors. I guess I need to make a point to get her outdoors at least 5 mins each day to strengthen her eyes.

It was a busy, fun week and glad to have the weekend to catch up and relax.

Oh, Autumn

This is what a trach looks like when it's been ripped into two pieces. Autumn pulls her vent circuit off to communicate to us in different ways. I guess her nurse put her vent on too tight and when Autumn went to pull her circuit off she pulled hard enough that she ripped her trach into 2 pieces to get the vent off. The tube piece was still in her trachea so she could still breathe and the other pice was still hooked onto the vent circuit. The nurse came to show me...I walked in and Autumn was smiling so big and playing with the metal coil hanging out the end of the tube. I did a trach change and she's fine. I didn't even know that could happen because it's made of strong silicone but Autumn proved it can with some strong muscles. New thing to watch out for now.

So, that happened last night and then this evening we had a near drowning episode with her. Daddy was giving her and Gage a bath while I got Autumn's after bath and trach care supplies ready. I went into the bathroom to let James know I was ready for her and he was rinsing her hair. She leans forward in the tub sometimes but the bath water was too high so when she leaned forward her HME went into the water and filled with water and went down her trach tube. (An HME attaches to the end of the trach for moisture but we only use it during bath to block water better when she splashes). I noticed she was blueish and she started coughing at that time. James pushed her up more when I said something and then she was getting a darker blue. I got her out and took her to her room and started bagging her. James got her oxygen going and she threw up the water. She was getting pink and then went blue again and looked sleepy (like she was about to go completely unconsious). I bagged her again and she became pink again. James suctioned her and got her vent on her. We heard Gage yelling from the tub so James went to check on him. Apparently, Autumn had pooped in the water right before I took her out and Gage was standing in the tub trying to stay away from her waste and yelling to be rescued. James took him upstairs to take a 2nd bath. ;)

I finished getting Autumn dressing, trach care done, and then did some CPT and gave her a breathing treatment to hopefully get out any other water that may still be in her lungs and hopefully to prevent anything from causing sickness. James felt bad about it but he did not realize that her HME was underwater and that the water had been too high. We have both now been guilty of making a simple mistake and causing Autumn to almost drown. I did it back in 2009 when water in her tubing went down her trach after a bath and we had to call an ambulance because she was out for almost 2 mins. She was fine though once we got to the hospital and the x-rays showed no water in her lungs. It's very easy for things like this to happen when bathing a trach child and that is why many stay away from pools because it does not take much water to cause a huge problem...just have to always be aware and alert.

It still amazes me how God takes over in these situations. This time I did not panic and my heart never raced. I was clear headed and calm the entire time. I guess experience helps of knowing exactly what to do to in these situations. It still blows my mind how one minute we are bagging Autumn and less than 30 mintues later sitting as a family watching American Idol and it's normal for our family. It's strange because I never thought God would call our family to deal with these kind of things but He has and has equipped us with everything we need to be able to care for Autumn and all the "suprises" she throws our way.

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? ;)