Our Christmas

We had a very blessed Christmas this year. Madison's Christmas started the weekend before going to Lubbock to spend time with her dad and his mom's side of the family. On Christmas Eve morning Madison and Gage went with Madison's grandma Roxane to celebrate Christmas with her husband's family. I love how they have always accepted Gage as part as their family just as much as James' side of the family has accepted Madison. It just makes it so much easier on the kids when we all still love each other and get along and all the families treat the kids as their own on every side. I hope my kids one day understand how blessed they are to have such loving families all around and never take that for granted. Anyways, back to Christmas get togethers. On Christmas Eve night we got together at my mom's house and this year her entire side of the family was able to make it.

We took a pictures of everyone...here they are: The picture is of my mother and her brothers and sisters with their spouses, their children, and their grandchildren. We have grown so much! I hope all of our children will continue on the tradition of family get togethers as they get older as well. There is nothing like the support of a large family.

We did not get home until about 11:30pm that evening and by the time everyone got settled and in bed it was about 1am. 7am came very early on Christmas morning. It was just us girls who woke up first so I made us a big breakfast and then when Gage woke up it was time to get daddy up and open presents. I was so excited to have our first Christmas home together as a family of 5 but when you have a special needs child there are some things you have to get done first before being able to dig into Christmas. We got Autumn and her equipment moved into the livingroom and right after she opened her first present she started vomiting. This is what happens when you have a child with reflux and you feed her and then try to sit her up and move her around before her meds kick in. So, after every gift she opened we would have to stop and clean her up and suction her. We finally gave up on her opening presents until she felt better but the other kids were really good about being patient while we took care of Autumn in between them opening gifts. It was not the first Christmas I imagined but it still turned out good. After presents we got ready to go to my grandparents house on my dad's side. James had to work Christmas Day so I was left alone to load up all the kids and gifts and head to Odessa. We had a wonderful time at my grandparents. I had to go to a family visitation since my best friends grandmother died earlier in the week and since I had no nurse my mother and sister-in-law went with me so they could sit in the car with Autumn while I went to the viewing. No one besides James and I and our 3 nurses are trained on Autumn so when we don't have a nurse we can not be more than a run away from Autumn in case of an emergency. She did go into the 50's while I was away but they put her oxygen up and she came back up so I was glad they handled it well. Once we move to Dallas my sister-in-law will get trained on taking care of Autumn and that makes me feel so much more prepared in case something did ever happen to both James and I and there would be a family member who could care for her.

Christmas night Autumn woke up for 2 hours in the middle of the night so I was EXHAUSTED the day after Christmas. Me, mom, and my sister-in-law went early morning shopping while I had a nurse for a few hours. That afternoon we did Christmas with my parents and brother's family. We just let the kids play all day and relaxed some. I could hardly keep my eyes open so I was so happy to see my night nurse walk through the door that evening. ;) I forget how much work Autumn is when we go without nurses for a couple of days. I don't plan to have a day nurse once we move to Dallas except for my sister-in-law helping out for about 5 hours a day during the week so that is going to be a hard adjustment. I've done it before but I've gotten spoiled over the last several months having so much help. Even though this past week was very tiring I love being around family and just soaking up the memories. Sometimes I sit in silence when all my kids are in bed and wonder why God has blessed me so much. I don't have a perfect life but I would not trade my life with anyone else I know....I hope you feel the same way about your life and family.

Autumn update: Just wanted to brag about the new things Autumn has learned lately. She can point to her ear, hair, and hiney. ;) She can push herself to a sitting position while laying in her bed. Today during PT (which I missed) she army crawled a little to get a toy. Yea Autumn!!!

A dead spider

I should be blogging about our Christmas but just have not felt like taking the time to sit down and upload pictures and tell of our events. (I will though once I feel like it)

Instead I decided to tell what my son is doing. For Christmas he got Guitar Hero World Tour, a play laptop, lots of board games, Wii games, a DS with games, puzzles, golf club, remote control tarantula, basketball goal, and more. So, what is he playing with tonight.....a DEAD spider he found in the livingroom. He even gave his sissy his remote control tarantula because he would rather have the dead spider. He told the spider he loves it and wonders how it died. Tonight he's sleeping with it and singing to it. Dang, if I would of known the fun of a dead spider I could of saved a lot of money this Christmas. ;) Sometimes I wonder about that boy.

2009 Review

Looking back over the past year...this is how busy our little Autumn and we have been.

Autumn has had 50 therapy sessions of speech, physical and occupational therapy combined.

She has had 35-40 different doctor appts. So, that makes us having an average of some type of appt/therapy every 4 days throughout the year.

She has been to the ER three times this year and one of those being a time we seriously thought we were going to lose her.

She has only had 2 surgeries this year which is great compared to the 6 she had last year.

We have driven to Dallas 10 times this year so that is a total of 6,500 miles. We could of gone from New York to California, back to New York, and then half way to Cali again. I would of much rather see the sites of that trip than the ugly scenery from Midland to Dallas 20 times! :)

We have spent out of pocket (including having both insurance and Medicaid) a total of $6,373.17 on medical bills and related expenses like parking and gas. That is even with the help of funds from Medicaid to help with gas for trips. Thank goodness for all the donations and funds we recieved to help pay for those expenses.

No telling how much medical supplies we have been through or the hundreds of nursing hours we have had as well....and the numerous phone calls I've made over the past year for medical issues pertaining to Autumn.

Autumn has become my new full-time job. Even though I get sick and tired of all the appts, phone calls, and traveling....the smiles and accomplishments I receive from Autumn completely outnumbers any of the stuff I have listed above. I could not imagine how much more empty my life would of felt without her being a part of our family. She is very crucial now to our family structure and she has made us all so much more closer, blessed, inspired, and appreciative of each other. Thank you Lord for giving us another year of blessings with our little Autumn and praying for more year after year. I'm so blessed for my 3 beautiful children!

Early Present

Last night we let Gage open an early present since Madison was in Lubbock doing Christmas with her daddy's side of the family. I did not think though we would get such a happy reaction...can't wait until Christmas morning to see the joy on all the kids faces!!!

Christmas Time

I just wanted to mention how thankful I am for this time of year. Most people I've noticed are extremely busy this time of year with lots of shopping and parties to go to. I have to say this is probably our first month since we've been home in January where I am not super busy. It's been such a relaxing time for me. James and I went shopping one evening and got the majority of the kids gifts and then on a Sunday afternoon Madison and I managed to get the rest. The house has remained clean since our house is on the market so that is always a blessing. The greatest part is that Autumn's schedule has slowed down this month. She had most of her therapy sessions the first 2 weeks of December and only one dr. appt today for her shots. So, I've actually been bored around here and trying to find something to do. I never thought I'd be able to say that again. It's nice to just sit and play games with the kids or waste time on the computer. So, I am trying to soak in this month as much as possible because I know once January hits we will be back into fast mode again and chaos. I encourage all of you to just take a day to stay in your PJ's and do nothing but love on your family and relax! Merry Christmas!

Week One

Our house has been on the market for a week now. We had an Open House with no shows...it's winter, it was later in the day, and during the Cowboys game so we figured there would not be many people but was wanting at least one person. ;) We have had to show the house twice this week. Okay, I already hate living the life of trying to sale my house. It's good because it forces me to keep my house clean but I hate having to stop everything when someone calls, make the house perfect looking, send James and the kids away, and then sit until the people show up, walk around for a few minutes and then leave. ;) The first time they called the kids and I were in the middle of making chocolate pretzel sticks and I did not get a chance to eat lunch until after 1pm. The second time I was not even dressed for the day and then Autumn throws up in the middle of trying to clean. This is stressful for me since I am a person who lives a life on a schedule and I hate when my schedule is messed up. ;) We are not stressing about the actual house selling (just yet) since James still does not have a job yet and the less we have to live with my parents the better. ;) (No cable or internet is going to be a challenge for us).

Everything else has been fine around here. I'm trying to get Autumn on a new schedule and she's not cooperating. I wanted her to take long afternoon nap since she fights us to go to sleep around 10:30-11am and only sleeps for about an hour and that's all she sleeps during the day. I figure if we keep her up until about 12 or 1pm then just maybe she would sleep over an hour each day. Um no, instead she's been going back to sleep at 9am every morning and sleeping about an hour. What?! She goes to sleep at night around 8pm and wakes up about 6am so I have no clue why she does not take longer naps. She's just like her big brother. I also want us to be more consistent with her therapies and getting her weaned off the vent. It's so hard though because some days Autumn does great off the vent and others you can't take her off for more than a few minutes. Some days she will cooperate with therapy and others she won't do anything and desats the whole time. So, as much as I try to be on a schedule and consistent, she has other plans.

She's been doing so much lately with copying us and learning so many new things. She's learning some signs and how to do a few things to get our attention and get her way. ;) It's exciting to see her doing normal baby things as other kids her age.

Autumn videos

Gage and Autumn playing.

This is how you know you really are a bad singer...lol

Autumn eating dinner

Gage the Entertainer

This is some of the great entertainment I get during the day...glad he's around to make me laugh.

This one really makes me laugh everytime I watch it.

I just love my silly son.

I had about 4 more of these videos but they take too long to load but you get the idea. What is really funny is watching Gage watch himself on video...he thinks he's hilarious as well. Show off!

For Sale

Yes, we signed the papers to put our house on the market today. Excited and Scared! Excited because I can't wait to house shop and to know once we are moved we do not have to make that dreadful 6 hour drive anymore. Scared because James does not have a job there yet and just the not knowing of what's in our near future. Not sure how long we will end up living with my parents, not sure about getting new nursing, therapists, and DME company. I know this move is a MUST and so I have no doubts about it but I do worry about not having my mom nearby to call up anytime I need extra help. It's a big step but I know in my heart it is what is best for Autumn.

Speaking of little Miss Autumn....she woke up at 3:45am and stayed up until 11:00am this morning. Sheesh! James changed her diaper before going to bed and that woke her up. So, I got up with her and then James said he would take over. Our night nurse had called in. So, at 5am I took over and after 30 mins of trying everything to get her back asleep I figured it's not worth it. I turned on cartoons for her and went to bed. When I got up at 7:30 she was still wide awake just watching her cartoons and she stayed awake ALL morning. She took a 45 min nap, had OT (while off her vent), and still did not go back to sleep until 7:45pm. She did have a low grade fever but acted fine so I'm praying it does not turn into anything more. She's such a mess. She always wants to be up and is so nosey.

I'm done with my Christmas shopping and excited about that since I HATE to shop. So, my next few weeks will be spent just keeping the house super clean for showing and getting geared up for the holiday parties. Later I will post a few videos of Gage and what he likes to do to entertain me during the day. ;)

Snow Day/No School

Today we had a snow day and school was cancelled. Yes, we only had about 1-2 inches but since we only see snow once a year or every two years we have to take advantage and cancel school and PLAY!!! I made sure we took Autumn out even though it was for less than 2 mins but we will be moving to Dallas soon and this may be our last chance to see snow for years. My poor niece has never experienced playing in the snow and she's 8!!! So, I want my kids to remember these rare days we have. Gage making snowballs on the trampoline
Madison and her friend Eden (who lives a few houses down). They spent all morning together playing with the other kids on the street making snowmen and having a snowball fight. Now a few of the girls are having a pajama party at Eden's house watching Christmas movies and drinking hot chocolate.

Here's a video of Autumn first time seeing and touching snow. I think she enjoyed it even though it was short-lived.

Counting my blessings daily

These past 2 weeks have been sad in my world on my SB mom and trach mom groups. There has been 3 losses of kids...1 with a trach and 2 with spina bifida. It reminds me quickly that even though I don't see the miracles I want with Autumn daily that each day I have with her really is a miracle. She's been through so much and I forget sometimes that we could of lost her during her 8 surgeries or during the dozens of times she has stopped breathing on us. For her to endure all she's been through and to be as healthy as she's been through it all is such a miracle in itself. God has had His hand in every moment in her life and He continues to keep blessing us everyday with her. I keep wanting the miracles of her to have no vent, no trach, or to be able to crawl, stand, walk and talk but really I will take the miracle God gives me each day that I get to see her smile everyday and hug and love on her. My heart aches for the families that do not get that privilage anymore but because of those families it shows me that they would give anything to be going through what I deal with each and everyday with drs., medications, treatments, therapies, and so on and I need to be more appreciative or what I do have and not what I do not have. These families have shown me strength and appreciation and they are in my prayers as they deal with their great loss but they now know they have little angels awaiting them in heaven.

Autumn Singing

Okay, so this is a video of the way Autumn sings. Since she can't make noise you won't hear her but she pops her lips together when we ask her to sing. We think she sings just beautiful ;) She only did it a few times at the beginning of the video and then daddy walked in so she stopped because she had an audience...stubborn like her mommy.

There's not much to update and I am thankful for that. Autumn's just been hanging out and staying well. She's back up to being off the vent for an hour twice a day...her surgery set us back more than we wanted but now we are back on track. We are just praying to stay away from drs. and hospitals until she goes back for her 2nd RSV and flu shot on Dec.18th. She has a busy therapy week next week....4 sessions but this week is a chill week for us.

Apple Pie, Decorating, & Thanksgiving

Yesterday we decorated for Christmas and put up our tree but the best part of it all was this: My aunt Trudee surprised me by bringing me an apple pie she made for me. I LOVE LOVE LOVE her apple pies..they are the best! I had to hurry and take a picture of it and then gobbled down 3 slices...yes, 3 slices in one afternoon. Yummy! It was special to me that she came to visit and got to hold and love on Autumn for awhile. Thanks so much Aunt Trudee!!!

Here's some pictures of our tree decorating. This is Autumn putting up her baby's 1st Christmas ornament since she was not home to do it last year.

Our end picture...Madison though was having attitude so she got sent to her room but I still managed to get one of Gage and Autumn with the tree...I forgot to put the tree skirt on before the picture.

Here's OUR angel putting the angel on the tree.

This thanksgiving my parents came to my house for Thanksgiving since Autumn is still on lockdown(we will make an exception for Christmas Eve though). I cooked most of the Thanksgiving meal...mom cooked some as well. It was my first year to be in charge of the majority. I managed though to get all of Autumn's morning routine done, get myself and Gage ready, clean the livingroom and kitchen, and get everything cooked by 11:30am. I did however forget to bake the pumpkin pie so that got done a little later. ;) I hope our new house has a bigger kitchen so next year I will have more room to cook and have everyone over.
It was so special to have Autumn sitting at the table with us this year...she LOVED the black eyed-peas my mom brought. She ate it more than her beloved mac and cheese. It was so hard last year with us not being all together and I'm so thankful to have all my kids home to celebrate with. Now we are just relaxing and watching football...Gage is all ready for the Longhorn vs. Aggies game. Daddy is WAY out numbered here. What a great Thanksgiving Day with food and family.

Good news

Insurance sent us a letter today that they have approved a back-up vent and a generator for us. Whoo Hoo!!! We figured we would just wait for their denial letter and then send it to Medicaid but they are taking care of us. We also are finally getting Autumn's RSV shot ordered. Thank goodness she got her first dose at the hospital this week. They are saying our co-pay will be $160.00 each month but I am having them check to see if Medicaid will cover that part for us....that adds up after needing one each month for 6 months.

James and I went Christmas shopping for the kids tonight. I have to admit it was depressing to shop for Autumn. Every toy we were thinking she can't do that and this is what she would be doing BUT.... We did get a big toy we hope she will be able to do in the next 6 months and then more she can do while sitting in her high chair playing. Most day I am accepting of her SB but some days I just wish things were different. I still mourn "normal" at times and wish we could get a break from this life like a vacation from it at times to refuel ourselves but it is what it is so I have to suck it up and keep pressing on. ;)

OUTRAGEOUS!!!

Okay, so we finally found a pharmacy who could get Autumn's medication in the next day. So, they put her on a medicine called Tobramycin for the infection that grew on the culture. She was on this same medication a year ago while in the hospital for an infection she got right after getting her trach. Anyways, guess how much a 10 day supply of the medicine costs??? Are you sitting down? $4,089.12--Yes, you read that correctly. How do they think anyone could afford a medicine that costs that much? Thank the Lord we have Medicaid or we would not be able to give Autumn the medication. That costs MORE than the car we just bought. So, we got it for NOTHING! I am still floored at the cost of healthcare in this country...insane!

Keeping us on our toes

So, we did get discharged today and got to come home. Today Autumn has been sleeping all day and requiring oxygen and a higher breathrate.

We get home at 8pm and start unpacking and getting settled in again. Our night nurse came in and was getting Autumn's meds and stuff like that. James and I were sitting in the livingroom talking about how tired we are and then the nurse yells from the room that he is going to have to bag Autumn. So, there we go to see what she's doing. Sure enough she was blue and in the 30's. Being the over-bearing parents we are...James took away the ambu bag from the nurse and started bagging Autumn...being the control freak I am I took it away from him and REALLY started bagging her. She was NOT coming up...she ALWAYS comes up instantly when we bag her. So, James said to suction her..I tried but couldn't so I knew she probably had a plug and needed her trach changed. I got the emergency trach out and lubricated as James took the old trach off...um...the trach was not even in!!! It was bent under and not even in her stoma (trach hole). We got the new trach in and then bagged her and she came up. We are thinking it was because today we let the nurse in training at the hospital practice on Autumn this morning and do trach care. The nurse ofcourse helped her but she was having a hard time getting the ties tight enough. Anyways, we did not even check to see if they got it tight enough and just trusted them My guess is as soon as we got home Autumn pulled on her vent tubings so I'm thinking that is when it slipped out and then after getting her clothes and diaper changed she finally went down. So, that got us moving us up in a hurry! We successfully did our first emergancy trach change..I knew the day would have to come eventually. I'm just glad it did not happen while we were on the road So, our nurse just got to sit back and observe..that's why he gets paid the big bucks....haha. I have to admit I was so proud of James and I...it's a good feeling to know we are able to save our daughter's life when needed..okay God is the one who actually is doing the saving but to know He wants to use us in the process is an awesome feeling.

Morning Update

Autumn slept ALL night...that means from about 6:30pm-7:00am. I slept good as well with only being woken up by a few beeps and nurses voices. This morning Autumn is not wanting to open her eyes...just playing with them closed. I cleaned her eyes up and got all the crusties out. She will open one just to peek for a second but I guess it feels much better to leave them closed. Her trach culture is now growing something on it so they will be putting her on a med for that.

So, they do want to do Autumn's EEG before she leaves but apparently she has to have an RT go with her to get it done and they can not afford to send one down with her because that would leave them short-handed upstairs. So, they are checking to see if they will come do the EEG in her room...that is how they did it when she was in the NICU so hopefully they can and that will be over with. That means it will push back our discharge later in the day. I just hope it's not too late so we can get on the road tonight and not have to stay another night here and miss another day of work.

Red Eyes

Just had to show you how pitiful my baby girl looks.

The red on the outside of the eyes is just dried blood that we have not wiped off yet because we don't want to irritate her eyes anymore right now. They are so red though on the inside where they cut the eye muscles. She was able to eat. They gave her some valium for the pain. She then had an episode and desatted down to 6 and went dark blue and had to be bagged. Once she came up she was fine. So, they have her on a slightly higher breathrate and on a little oxygen. They are going to try to wean her off the oxygen but I think it would be good for her to have it throughout the night. She is still running a low grade fever...they said if it hits the 101 mark then they are going to do a culture on her blood and urine. The did a trach aspirate because of her excess secretions and the yellow color to them. So far the culture has not grown anything but it can possibly take 5 days. They finally checked her ears and said they looked all clear...thank goodness because I really don't want to hear ear tubes are in our future...we've already had enough surgeries for now. The good thing is I was having to suction her almost every hour last night (she's rarely suctioned at night) and sense she's come back from her surgery she has not had any congestion or needed suctioning. Her nose is another story and has been pretty stuffy...I think it's allergies. So, please continue to pray for her to do well throughout the night and that we will be released before 3pm tomorrow so we will not get home too late.

Surgery went well

Before surgeryRecovering after surgery
Finally woke up

The sugery went well. Autumn fussed when first trying to wake up but they gave her pain meds and we both sleep a good solid 2 hours. Her eyes have a little blood stain on them and are swollen. They said she will just need eye drops for a week. Our great dr. said he would not have to see us again until we are here for our next trip which will be in January...thank goodness. They still are checking about getting an EEG done while we are here but I'm not holidng my breathe on that one. We are planning to be released tomorrow and heading home. I just pray Autumn sleeps well tonight...we still have not been able to feed her yet so I'm about to check on that one. ;) Thanks everyone for your prayers.

Surgery

It's 1:00pm and Autumn just went back for surgery. They said it would take about 1-1.5 hours.

I did not think about them wanting to recheck Autumn's eyes in a couple of weeks after the surgery....yikes! I am not driving 6 hours so they can say "looks good". So we are going to see if she can follow up with someone in Midland.

They said she will not need eye patches and that she will just need drops every day for a week. Will post after surgery.

Our night

We had a long night last night. Autumn kept desatting and coughing and needed suctioning. I think I may of gotten a total of 3 hours off and on. She is also running a low grade fever. So, not sure is she's getting sick or this is because of the weather changes or what. They said we can still do her surgery though...I was nervous they wouldn't with the fever. So, today we are sitting around just waiting until they take her back...and hoping Autumn can hang in there without food. Poor baby! She's really going to hate when my breakfast comes and she can not have any...what a mean mommy.

Her pedi called and her blood levels for her phenobarb came back normal. I was hoping they would have to cut back on her dose but looks as though we are keeping them where they are now.

I'll keep everyone updated throughout the day.

It worked!!!

Yes, Autumn actually slept through her IV placement..even snoring. Also, the lady who did it actually got it on the first stick and not in her "magical" spot. Whoo Hoo!! Let's just hope Autumn does not blow this one and that she does not mess with it....yeah right.

Settled in

Looking at pictures of sissy and bubba. We have been waiting around all day for the hospital to call and let us know when they have an open room for Autumn. Finally they called around 5:30pm and we got here a little before 7:00pm. It's so weird that I feel so comfortable in hospitals now. I use to HATE them and now Children's feels like a place to visit old friends again. We are on the pulmonary floor which this will be our 3rd stay here. It's great to see the same nurses and techs and they all have to come see how big Autumn has gotten. We got her checked in and updated on all her meds and routine. They are going to check her ears while we are here and we were hoping they were going to be able to do an EEG while here but it may look as though that may not be possible because tomorrow we have to wait around until they call her to surgery and then they may not want to do the EEG post-surgery. Dang, I was hoping to kill two birds with one stone but looks as though we may have to schedule it when we get back home. Yuck! Anyways, we took Autumn off her vent and let her hang out on the couch with us because soon she will be all wired up again and have to lay in bed. Then they got her all hooked up to their pulse ox and ventilator. The fancy vent has been beeping "low beep" all evening so hopefully that will get fixed and I will not hear it all night. Autumn is sleeping peacefully now but the IV team will be in sometime so maybe they can do it without waking her. Wouldn't that be wonderful?? So, it's just me and Autumn tonight and tomorrow we have no clue what time they will take her into surgery. Pray for a successful sugery!! I will post more tomorrow as things happen.

H1N1 vaccine

To our surprise our pedi decided to get some H1N1 vaccine for some of his high risk patients. So, today we took Autumn in to get her first dose of the vaccine and to get bloodwork done for her. Once again the nurse had a hard time hitting her vein. Apparently, Autumn only has ONE good vein and it's located on her left arm but she was already bruised in that spot from her IV on Saturday so the nurse tried the other arm first. No go so she went back to the good spot and finally got it. Autumn really makes it easy on me though because she's such a great patient. She just sits there and let's them poke away. She did cry for a second (until I plugged her up with the paci) when the nurse was searching deep for it but other than that she's a champ. So, it really makes me wonder if she can feel deep pain in her thighs or not...because if she does not cry for IV's or bloodwork than maybe she has such a great pain tolerance that she actually does feel the shots but does not cry...she does flinch her leg when given shots so just maybe she does feel them. ;)

So, we will be heading off to Dallas on Sunday to get set for her surgery on Tuesday. Please pray for travel safety and of course Autumn's surgery.

1 year trach anniversary

November 13, 2008 was the day Autumn got her trach. We were scared and excited about it. We had no idea what it meant to take care of a baby with a trach and vent but we were thrilled it meant she would be able to finally come home. What a whirlwind year it has been and how much we've learned. I remember James and I doing our first trach change together. We were confident and had great team work. It may of taken us 10-15 minutes to get it done but we did it and we were so proud of ourselves....we were motivated to learn fast so we could take our baby girl home. I also remember the day we were told we had to do 3 trach changes by ourselves (no help from each other) before we could be released from the hospital. Are you kidding me???.....I could not figure out how in the world to do it but they showed me the tricks of getting creative and using my mouth since 2 hands were not enough. Now, one year later....I can not tell you the last time James assisted me with trach changes. I'm solo now and it takes less than 2 minutes to do it. Shoot, I can even do one while chatting on the phone....haha! Even though it does take a lot to care for a baby with a trach it has been SO worth it!!!

So, I thought I would share a video of what Autumn's trach change looks like. We only change the trach once a week but we do trach care daily which just consists of taking off the old ties and cleaning around the neck and stoma and then putting new ties and gauze on. Autumn actually coughed during her change on the video and that caused her to desat for a little while but normally she does not cough and does just fine.

Enjoy our happy girl even when she's having to get her trach changed.

My photographer and model

So, I think my kids may of found their future callings. This is what Madison and Gage do during the days when I'm busy with Autumn or fixing up the house. She's perfect being creative behind the camera and he's perfect posing for the camera. She does let him do silly pictures in between to keep his attention but these are some of my favorite. I will walk outside every once in awhile to check on them and she will have him in trees or on top of cars. She told him they were going to do a few pictures inside and Gage was scared she was going to make him get on top of the ceiling fan and pose. haha

So, enjoy the talents of both of my kids!!!

Follow up appt.

Took Autumn to her pedi to follow up from our ER visit. He was not happy that I did not call him when she was having her seizure. So, I have strict orders no matter what time or day I am to call him the next time she has one BEFORE we call an ambulance or take her to the ER. He confirmed from the video it was a seizure and not a child wanting attention. ;) Anyways, he wants us to take her to get an EEG this week and he has started her on seizure medication. He also gave us medication we can give her while she's having a seizure. Oh, and she had ANOTHER eye infection...so we don't know if that is what is causing these seizures or not. He can not believe the ER dr. said her ears look fine because they are really infected. What an idiot that dr. was! So, we are getting more antibiotic for that. We also have to take her back in a couple of days to get bloodwork. The medication will probably make her extra tired the next few days. So, I'm tired. Between constantly being busy doing house repairs and taking Autumn to the dr. I'm ready for all of this to settle down. We will have a busy week here this week and we leave on Sunday for her surgery in Dallas on Tuesday. Only a few more weeks until our house goes on the market. Whew! I also need rest from this weekend and Autumn keeping me up last night but no rest for the weary around here. Gotta go help set up for the big Veteran's program Madison's school is doing tomorrow so I will update when more tests have been run this week. BTW, we are back on Medicaid...praise you Lord.

Our ambulance ride to the ER

Let me go back to earlier this week. Tuesday we moved Autumn up to 1 hour twice a day vent trial and she did great except she threw up after her morning formula. Wednesday we did not do our vent trial with Autumn because I was busy all day long and I can not remember f she threw up that day or not. Thursday she once again threw up after her morning and afternoon formula. We did our vent trials and she also did her stander. Did great for both. Thursday night she started needing more breathrates and some O2 at night and was running a low grade fever. Friday she seemed a little tired so I figured her vent trials may of worn her out. So, we did not take her off the vent on Friday and just kind of let her rest for the day..she threw up her formula at both feeds that day as well. She was needing a little more of a breathrate during the day. She ran a little more fever that evening (when she runs fever she always need a little extra support on her vent) and was given Motrin and had no other fever the rest of the night. Saturday morning she was acting fine and I gave her her morning formula. I then decided to take her off the vent and see how she would do. She was doing fine for about 5 mins and then started vomiting. This time she went down into the 30's and I bagged her until she got pink again and put her back on her vent...she acted sompletely fine after that. For her morning nap she slept for about 3 hours which is NOT normal for her. She also went to bed at 6:30pm that evening which is early for her. I was thinking the vomiting is because of her acid reflux dosage may need to be adjusted since she's grown and that it may not be working well and that could cause her to vomit and stop breathing. Finally we get to Saturday night. About, 12:45am James and wakes me up to come have a look at Autumn. She was acting in a way we had never seen before. She would not respond to our voice and she was acting as though she was having trouble breathing. Her stats though were 97 and we tried suctioning her and she was all clear...no resistance showing no mucus plug. She was like this for about 7 minutes and we just did not know if maybe she was having a stroke or another seizure. Then she started twitching ..not as much as she did during her last seizure but it lasted for 12 minutes. We did video tape it so we could show drs. and called the ambulance. When they arrived she had finished but as they were there she started acting spaced out again. So, we decided to go ahead and have them take her to the ER. One the way there she went into the 30's again but came back with some o2. The EMT's were telling James that the pulse ox can not be reading correctly and James was like "Um, no...she's turning blue and she does this and it's right so get her hooked up" Anways, she got to the ER and they ordered blood work and a CT scan. I called mom to come watch the kids and by the time I got there she was acting normal and they were trying to get an IV started. I think she got poked about 5-6 times. Anyways, James showed the ER dr. the video and his comment was, "Yeah, there is some twitching going on but to me it looks like a kid trying to get attention" What??? Are you serious? or do you have a really dry sence of humor that does not smile after making a comment like that? Yes, my 13 month old daughter knows how to fake a seizure to get attention. Was he there looking at his child for 12 minutes who would not make eye contact, taking short breaths, had no tone to her extremities, and could not even hold her head up? The insensitivity of some drs. James, the nurse, and I were all stunned by his comment. Anyways, the CT came back fine and her bloodwork was fine as well. She were also concerned because she's really pale right as well. So, they gave her some phenobarbital for her seizure and he prescibed some for her as well. He did tell us he does think it was a seizure from what the video showed and we need to follow up with her pedi and see about seeing a neurologist. So, we were released back home.

You know, I'm so use to Autumn when she stops breathing on us and there is something we can do to fix that but these seizures really get to me. I just have to stand there helpless watching her. It's also stressful because everytime she does great something sets her back and we are to step one again. Now we will have to see about getting the right dose of seizure medicine which will probably mean bloodwork every month. I'm just so tired of seeing Autumn go through all she goes through. It breaks my heart and I just wish I could take her place. She's such a champ though and just lays there and let's everyone do their thing to her, she does not cry out but you can see small tears streaming down her face when she gets poked over and over again for blood. So, please keep praying we will get this thing behind us as well...God always gives me that peace that He's cared for her for this long and that He will continue to get her and us through each time.

Mother/Daughter Time

Today Madison and I got to have mother/daughter time alone. I took her to see the Michael Jackson-This Is It movie. We both really enjoyed it since I've been a MJ fan since I was little and now Madison has become a fan recently. We then went to dinner at Chili's. I liked just being able to talk to Madison without interruption from Gage or beeping from Autumn. We talked about my high school days and some about how I met her daddy. She loves hearing stories about her daddy and I since she was so young when we divorced and does not remember us ever being together. I always thought that would be a good thing for her but she sometimes has a hard time with us not being together because she sees how well we get along now and wonders why are could not "make it work". We make better friends than spouses is what I say to her. ;)

Brag time: Madison was selected by her fine arts teacher to be apart of the All City Elementary choir. They choose 12 5th & 6th graders from each campus and Madison was one of the few selected. She LOVES to sing but will rarely do it in front of people so I'm glad she's getting more brave and has found something she likes and is good at. I would say she gets it from both her daddy and I but that's not true. Yes, I was in choir for 4 years but I do not have a great singing voice...I'm not sure if you could even call it good...just okay. Her daddy though has a beautiful voice so that is where I have to admit she gets it from. I love men who can sing and was lucky enough to have married 2..James sings great as well. So, she will be able to perform in a concert in January and is so looking forward to it. Her school also does a veteran's program each year and this year she will get to be on stage and dance to a song from Footloose. I guess she's like her mom and dad in the non-athletic department and will stick to the fine arts department. ;)

Stander

Autumn has a new toy...a stander. It allows her to stand up and bear weight. She's a little too short for it so we added boxes under her feet for now. We also did not want to do bracing right now because of the cost so I bought her some $50.00 tennis shoes and they seem to give her the ankle support she needs for now. We are going to wait and do bracing when she's about 18 months. Autumn just loved being able to stand upright for the first time and play. We kept her in it for 30 mins and she did just great. So, we have another big piece of equipment to add to our house...this is one reason we need a bigger house..it takes up lots of room. Gage just had to get into the picture as well.

Loving our new freedom

Wow, life with a trach minus a vent is so much better. Autumn has finished her first week of the 30 mins twice a day and tomorrow we will start 1 hour twice a day. It's just so nice when we move her into the livingroom to be able to take her off the vent and then bring in her vent and supplies. Today Autumn even hung out with her big sister in Madison's room. I know Madison was thrilled to finally get to hold AND walk with her sister for the first time. Gage wanted me to go outside to watch him climb a tree and I told him I couldn't (like always) because I had to watch Autumn (forgetting she was not attached to a machine). So, Autumn and I were able to walk outside and watch her big brother climb a tree. I love this new freedom in our house. Now though everytime we hook her back to the vent she immediately pulls it off....she's trying to tell us she does not need it anymore. She's figured how to wake me up in the mornings as well...she just pulls her vent off so it will alarm and wake me up. Not fun for me because I can't just ignore her and sleep a little longer. She's still been doing great at night so we will see how well she does this next week.

Today I found out Autumn's medicaid did not get switched over from SSI to MDCP so now we are without Medicaid until they get the correct forms they need. We already know she will be approved again but it's the waiting for it to get re-activated that has me a little stressed. Thank goodness we still have insurance to cover 90 hours of nursing a week and our equipment. We are concerned we may have to re-schedule her eye surgery but praying that is not the case. I'm a little frustrated though that they did not get the forms filled out a month ago when I called to tell them she would be losing SSI..oh well...God is still taking care of us. ;)

We've also been having problems with Gage. He's been testing his limits and getting a little rebellious. So, today he got a spanking and grounded from just about everything he loves to do. He told me he thinks it's fun to get into trouble so I made sure I changed his thoughts about that. He now does not think spankings are fun anymore. ;) My sweet baby boy who never did wrong has changed into this child who talks back, argues, doesn't listen, and whose WAY too competitive for his own good. So, our new challenge is trying to nip this before it gets worse. Just when Madison starts getting out of the phase and doing MUCH better---I have another one starting it. At least I have some experience now and by the time Autumn gets there I will be a pro.

We are still trying to get home improvement projects done and still have so much to do and only 1 month left...so I've been really overwhelmed and exhausted lately but I'm still hanging in there and I know there is always a light at the end of the tunnel.

Questions and answers

Oh Lord, you have searched me and you know me. You know when I sit and when I rise, you preceive my thoughts from afar. You discern my going out and my lying down, you are familiar with all my ways...You hem me in-behind and before, you have laid your hand upon me. For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

This Psalm hangs on Autumn's board in her room...made for us in the NICU from a SB grandmother and it hung over Autumn's isolet while she was in the NICU. I've read and known this Psalm for years but it's one I've really pondered over this past year. I think this Psalm is one reason we never really questioned Autumn's SB diagnosis and the reason I have never felt guilt that I did something to cause Autumn's SB (something I know some SB parents do struggle with). I know God made Autumn perfectly in His eyes BUT I do sometimes wonder why some people are chosen to be disabled and what's the purpose of allowing this. I've never been involved with the special needs community or been around people who are disabled much. I would always say....Oh, I do not have patience to deal with that and God KNOWS that is not what I was made to do. lol...I just love when he proves me wrong. Well, for the last year I have come to know this whole new world of families with disabled/special needs kids. I am constantly noticing something over and over about these people....they see life in a different way. Yes, they all have struggles of dealing with kids of special needs but they appreciate EVERY little detail in their children. The kids are just incredible as well. Now, I know all of you reading this who are involved with special needs kids in some way or another already knew this but again this is all new to me. I was told a story of a party for speical needs individuals who were being given snowcones....one guy asked why they DESERVED such a great party with free snowcones? Just this one question brings me to tears and makes it all clear to me. God created disabled/special needs individuals to show us "normal" people what is really important in life and how we should react. We all feel we deserve so much and just want more and more. This guy probably has been through more in his short life than most of us ever will go through in a lifetime and he did not think he deserved a party and free snowcone? Autumn reminds our family everyday that no matter how hard it is for her to do anything...she's CONSTANTLY smiling. She gets pushed so hard during PT that she's sweating but smiles when she finally gets her head up like she suppose to and you see the pride beaming from her eyes. She gets sick and vomits and smiles afterwards. She gets her finger poked or blood taken...she's smiling. She had an ear infection and a tooth coming through....still smiling. Covered in bug bites...still smiling. She has this sweet, innocent spirit just like most special needs kids. They show love and compassion better than we do. They show strength and endurance. They ARE special people in MANY ways and they are needed in this world just as much as people without disablities.

I then ponder...I know Autumn was put here for a purpose but why God did you choose our family to bless with her? God knew she would need a father who is patient, calm, dependable, and loyal to his family no matter what struggles were put his way. God knew she would need a mother who is organized, strong-willed, selfless, and a homebody who would not mind having to stay indoors instead of hanging out with friends and family. God knew she would need a sister who is loving, compassionate, and helpful. God knew she would need a brother who was funny, sweet, and playful. Most of all God knew our family needed a daughter/sister who was full of joy to teach us to treasure the small things in life and how we need to smile more and be more thankful for the blessings we are given and not to take anything we have for granted. God slowly reveals His purpose and plans but once again He knows EXACTLY what He's doing!! So, I finally "get it" and understand and accept the journey He's given our family...took me long enough huh? Thank you Lord for all you have blessed me with and my family...gosh I love them!!!

Happy Halloween

Happy Halloween to you all!

I spent the first part of my day painting with Gage's help. Madison spent the day at her grandma Roxane's house. We ordered some jack-o-latern pizzas and Nana and Grampy came over. James had to work tonight so my parents took my kids trick-or-treating while I stayed home with Autumn.

Here's Little Bo Peep and her lost sheep

and then a silly faced dragon showed up as well.

(notice no vent tubes) ;)

Then the Yuhasz clan showed up to join in on the trick-or-treating fun.

Lily was a poodle and Gabe a pirate.

I remember the year Sarah and I were trick-or-treating with the kids and talking about having another baby and how maybe the next October we would both be pushing strollers with our babies. Well, last year Autumn was still in the hospital and then this year I really did not want to get Autumn out because she's in lockdown so we still did not get to push our strollers together. It was such a blessing though to see both our girls dressed up in their costumes and it was okay with me that I was not able to take Autumn and go with them but happy they decided to come by and keep our tradition of Halloween together. I guess next year they will have to come to Dallas for Halloween. ;) This year we bought LOTS of candy to pass out to trick-or-treaters but can you believe we only had THREE kids come by? Oh well!

Pumpkin Carving Tradition

Okay, so I can't stay away from blogging and sharing my great family with everyone...I'm still off FB for now though. ;) Today was an extra special day. For one since we have been married (6.5 yrs.) James has NEVER had a scheduled Thursday off but they went to a new schedule so he will be off every other Thursday now. Secondly, James and I started this tradition with the kids when Gage was a baby and I LOVE having our own family traditions now. We take the kids to the small pumpkin patch here and then clean out the pumpkins, carve them, roast the pumpkin seeds, and just soak up the family time together. Last year at this time we were in the middle of deciding about the trach for Autumn and I had gone home to spend some time with the kids and had to leave Autumn sitting in the NICU. It was great to be home again but it broke my heart to leave Autumn. I was sad that she would spend her first Halloween in the NICU alone but this year it makes me extra thankful for our family pumpkin carving tradition and seeing her sit with us to enjoy it brought so much joy to my heart.

James took Madison and Gage to the pumpkin patch alone this year...we had no nurse today so I stayed home with Autumn while they went but I made sure they took lots of pictures. Autumn is in lockdown...going nowhere expect dr. appts for the winter to hopefully keep her healthy.

I thought these pictures were a perfect fit for Gage and Madison.
Autumn happy as always...this is her little pumpkin that her BFF got her for her birthday. Just a side note...today we took Autumn to the dr. for a recheck of her ears and as soon as we walk outside to load her up she starts smiling and getting excited. She's ALWAYS bringing a smile and laugh to my face because she gets so happy over EVERYTHING. I wish I could be more like her.
I took lots of pics of before and during but since they take so long to upload you guys just get to see the after. Yes, Gage has a super supportive daddy and actually helped his son make a longhorn pumpkin...James is a A&M fan but he's WAY out numbered in this house so he did it to make his son happy.
Madison carved this by herself and did an excellent jon. It's kind of hard to see but it's a cat, jack-o-latern and spider.
I wonder at times why God wants to bless me so much with my three wonderful kids...what have I done to deserve them? and the patient and supportive husband? Last year was a VERY difficult time but it just made me more appreciative of what this holiday season will be like. Celebrating with my entire family just brings me a feeling of completeness, joy, and comfort.

BTW, Autumn's ears looked great and no more infection. We are still waiting for the RSV shots to come in...insurance and Medicaid has been turning everyone down this year and our dr. said they only got approval for 2 kids this year and we were one of them. Wow, thank you Lord!

Vent weaning

Today was vent clinic and I was so excited to be able to let Dr. G know how well Autumn's been doing on the vent trials I've decided to start with her. He was equally excited and impressed. He wants to be more aggressive than I've been and wants us to do 30 mins twice a day for a week, then 1 hour twice a day for another week, and then 2 hours twice a day for another week. After she does the 2 hour trials I am to call them back and let them know how she's doing and if we need to scale back or move forward. I've been leaving her vent on during trials "just in case" but he said to turn the vent off and she will be fine. I'm going to keep in on for at least the first week though just to make sure. ;) Her x-rays and blood gas came back great as usual. She did grow 2 inches and is now an entire 27 inches long but her weight gain was low...she was 18 pounds at last vent clinic and only 18.5 this time. Two weeks ago she was 19.6 pounds at the dr. office so they want to increase her calories. We are just going to try adding butter or oil to her meals to increase the calories...we could add a few more ounces of pediasure but since they are in 8 oz. cans we don't want to have left over after each day so we will see if the butter/oil will work first. So, we are having a joyful day knowing we are moving forward with vent weaning and just praying she will be able to handle the changes.

Oh, and every vent clinic James and I pick up Lenny's Sub Sandwiches to take to eat at clinic while we are waiting. Today Autumn LOVED the turkey sub I got and just kept eating and eating the turkey. She usually gags on meats but this meat she kept shoving down her mouth. So, fine shaved turkey meat will be on my next grocery list for her, as well as the cheese she ate up just as well. We still are working with trying to get her to drink liquids....Dr. G said maybe once we move here we can put her in the feeding program at the hospital which is about 6 weeks long, they really work with getting the trach kids completely eating and drinking by mouth and almost always successful.

So, after her eye surgery in 2 weeks we will not have to be back to Dallas until January 19th for vent clinic....Whoo Hoo...happy holidays to us!

Taking a break

I've decided to take a break from facebook and blogging for awhile. I will post major things like dr. appointments and surgeries but not everyday life right now. Honestly, I'm tired of negative comments and opinions from people who do not even know me or people who think they know me and don't. I have a sharp tongue that I can not tame right now so I am taking a break to work on that spiritual growth in my life. I want to be able to be more like Christ when it comes to people giving me their advice or opinions to be able to just not respond and remember they know nothing about me. It's time for me to humble myself and live in the confidence that God is my father and nothing else matters in this life. Thanks to all of you who are in my life that REALLY know my heart and continue to give me that encouragment I need daily...you are the reason why I will still update on major issues but taking a break from everyday life....I may just go back to good ol' e-mail for those who want to continue to get frequent updates on Autumn....most of you though can just call and ask. ;) God wanted me to use this blog to show others the great accomplishments He's doing in Autumn's life but Satan is trying to use it for his gain instead. I'm not ready to deal with Satan's battle at this time and need to just take this time to reflect on my own relationship with God and grow more before being ready to deal with what Satan's been throwing at me this past month.

3rd attempt

Autumn was off the vent for 30 mins this morning and set at 99-100% the entire time and no desats. Her and brother were playing on the floor with balls the entire time...you can tell she's so happy being tube free so she can turn and play easier. The drs. are going to be so impressed...I can't wait for Tuesday.

2nd try

Today I gave Autumn a second try off the vent. She went 29 mins without desatting!!! Her heartrate did go up to 190 so I put her back on...I was going to anyways at 30 mins. The heartrate going up just means she was working a little too hard. She was also playing in her entertainer again and that wears her out anyways. I'm so proud of her! So, I will try again every other day and then see what the drs. say when we go to vent clinic on Tuesday. They will either be mad at me or really impressed. ;) They know how I am though and that I don't always follow the rules and make my own decisions at times when it comes to Autumn. They've liked that in the past so we'll see if they are still okay with it. They know I know Autumn better than anyone else and trust me with decisions I make about her. I've learned being a special needs parent means to not ALWAYS trust the drs. and to stand up for what you believe in with your child's care.

Autumn has started doing the cutest thing...she blinks her right eye. It looks so cute but she does not like doing it on command so I can't get a picture of it. She also pops her lips to make noise and communicate to us. The BIGGEST news is that Autumn is FINALLY getting her first tooth. It took 13 months but it is finally barely poking through. I LOVE her gummy smile so I will really miss it.

Vent free...for a little while!!!

Autumn was playing in her entertainer seat today and her vent kept popping off everytime she would turn a little. So, I decided to just take her off her vent just to see what she would do. She did great!!! She desatted to 85 about 3 times but came right back up on her own. After 22 minutes she went down to 80 so I put her back on the vent. She did start sounding like a trach baby though while off the vent. ;) By that I mean junky sounding...I did not realize how much the vent keeps them from sounding junky. I even suctioned her while off the vent and she did not even desat...she usually does when she's suctioned. I figured she would do pretty good because since having her new pulse ox we've learned how sensitive it really is and that somedays when she desatting a lot we just readjust her probe and she stops. I wonder how many desats are true desats? She rarely has desats where she turns grayish blue anymore so I think she's getting better and most of the desats we see are just misreadings from the probe. Anyways, I was so excited and I hope this is a road to weaning...we'll see. I also just have to say Autumn looks so much like Madison did as a baby in this picture.

We're making it official

So, it's official...we really are moving to the Dallas area. We are just in the beginning stages of planning the move. Today was out first step and we had our realtor come over. We went over the things we need to do to get our house ready to put on the market and decided to list it on December 1st. I do not want to have to be out of our house before the new year so listing it at the beginning on December will guarantee that and also give us enought time to get things fixed up and painted. I'm really excited but nervous as well. I've never lived anywhere besides the Midland/Odessa area so I hope I do well away from my parents. I know this move is something that has to be done for Autumn's medical needs and for our financial needs but it's still scary because I do not do well with change. At least I know I have my brother and cousin living in the area and already have several friends who live all around the Dallas area to give us some support. So, now James just has to find a job, we have to find a house, switch over nursing, DME, ECI, and MDCP stuff and we will be all set. We will live with my parents once our house here sells and either move during Spring Break or in June when school ends...all depends on how fast our house here sells and we buy in Rowlett. So, I am going to be extra busy the next 6 weeks getting our house ready. The kids are excited about the move...Madison is so ready to move now and Gage just thinks we will have stairs in our new house but I'd rather not.

Oh, and we are buying another car. Our neighbor is selling theirs and the price was too good to pass up and knowing we would need a second car when we move we figured we would get it. Hopefully everything will fall into place as easy as getting a great car deal but I doubt it. ;)

Results

We got the results back from her shunt series and everything was fine. So, the dr. thinks it was just from the pressure from her ear infection so we are giving her once more chance. If she has another seizure then we will talk about putting her on medication. So, the great news is that we are praying this was a one time event and will not happen again.

Also, my best friend Tanya went back to the dr. today and the baby's heart looks GREAT! Stopping the caffiene seems to have worked (plus prayers). They will continue to monitor the baby weekly for a little while to make sure it still looks great. Back to no more worry and more princess planning. ;) Pray for Tanya though having to live without caffiene that would be a miracle in itself for me to do it.

Today

So, I called Autumn SB dr. about the seizure...he suggested we get a shunt series done (x-rays of her shunt) and make sure it's still connected and working fine and if it's good then he would refer us to a neurologist at Scottish Rite. I called our local pedi about the seizure and referral and of course he wanted to see Autumn in his office first. So, the nurse and I took Autumn in. Apparently, she STILL has her ear infection and it's even worse. Who knew? She has been acting fine and her desats have been better the past week. So, he prescribed us a different antibiotic and still wanted us to do a shunt series just to cover ourselves. Off to the hospital we went. Autumn did great during the x-rays (she's always a great patient). We are waiting for the results just to confirm her shunt is still working fine. The dr. said some kids with shunts could have seizures just because of the shunt being in her head can set off seizures or something...not sure about that since it's the first I've heard it. He seems to think the ear infection and pressure from it could of brought on the seizure. So, I don't know...I'll be interested to see what the SB dr. thinks about that. That's the update for now.

Seizure

Autumn had what we believe was a seizure last night. I was awaken at 12:10am by James to come see. He happened to stop by the house when our nurse came out to show him what Autumn was doing. She was twitching all over...head, arms, and legs. Her lips turned blued and she stats went into the 50's. She was even drooling. It lasted about 2 mins before she stopped. Her stats came back up but she was disoriented and very limp. It took her about 5 mins before she would finally lift her arm and give us a little smile.

It had me all upset and wondering why she had one now and what is going to come. Has she been having small ones this entire time and now they are getting bigger? Every once in awhile she spaces out but that's about it. She's been tested for seizures in the past and nothing showed. I'm just frustrated because everytime I feel like we take a couple steps forward we get completely knocked back again. Is this going to be a one time thing or something we have to worry about? Will this cause more trips to Dallas for more drs. and testing? I'm just tired of there always being something. Last night I just prayed and gave it to God to handle. I'm so thankful he kept her safe during the seizure and the rest of the night. She is acting just fine this morning. It's just that feeling inside of me that everytime I feel Autumn is doing better...something happens and I'm reminded she could one day just not be with us anymore and how fragile she can be at times. Lord, please take away my fears of losing her and give me peace that you are protecting her and watching over her.

Prayer Request

I would like to ask all my prayer warriors who read my blog to start praying for my best friends baby girl. Tanya and I have been best friends since 5th grade and have been through a lot together....marriages, divorces, births, deaths, and everything in between. Well, she has 3 boys and recently became pregnant with her little girl. Last week she went to have her 20 week sonogram and learned that her daughter is having some heart issues. So, when she called to tell me..I instantly felt that deep, sunken in feeling I felt when we learned about Autumn at our 20 week sonogram. They are not sure right now the severity of the heart issues. As of right now Tanya can not have ANY caffiene and will be going to the perinatologist every week for monitoring. The concern is that their baby girl will get tachycardia (fast heart rate) and go into heart failure. So, we need major prayers that this will NOT become the case and the baby's heart will be fine with no more complications. Tanya and her family are believers and know that no matter what God is in control and there is nothing but praying they can do for her right now. I know the feelings she is going through and how she's constantly thinking about the health of her daughter. I know the feeling of trying to just enjoy your pregnancy and not trying to worry about anything else. I do NOT want her to have to go through a worrisome pregnancy or any of the dr/hospital stuff I've had to go through. Since we are so close I just feel like this can not be happening to her as well...she is suppose to be enjoying doing the "princess" planning. I know God though has a plan and whatever that plan is...they will get through it. As with Autumn though I prayed God's plan was to miraculously heal her and that is what I pray will happen with Tanya's daughter. God chose that healing was not what He wants for Autumn right now and we are okay with that and have accepted what He's given us but we never stop praying for her healing. We will also accept God's plan for Tanya's baby girl but will never stop praying for healing for her as well.

We also scheduled Autumn's eye surgery for November 17th. She will have to be admitted into the hospital on Nov.16th and will probably have to stay until the 18th for observation. So, our every 2 week trips will continue into November. Please keep praying for our travel safety and for Autumn's upcoming surgery as well.

Autumn - Autumn2

Surgery #8 to come

Well, it's been decided that Autumn will need eye surgery to correct the crossing and turning in. They will clip the eye muscle and re-attach it so the eyes will look forward. She has great vision in both eyes but she only uses one eye at a time while the other one turns inward...the right one turns in slightly more. Not sure if one surgery will do the job or if she will need more down the road. It is usually a day surgery but with her having the trach and vent they may have her stay overnight because of the anesthesia. So, hopefully they can get her in for her pre-op appt. while we are there towards the end of October and then we are looking at having the surgery in November sometime. I was hopeing we would not have anymore Dallas trips after October for the rest of the year but that won't be the case. I'm bummed she will have to be put under again and go through another surgery but it will help her vision in the long run and the early we do it the better. I will update more when I know the actual date.

Our 12 hour day

Yesterday morning we left the house at 9:00am to go to Autumn's renal ultrasound and urology clinic. Autumn's ultrasound was at 10:00am and we were done by about 10:15am. We then got to wait around for her next appts. at Scottish Rite which was at 12:15pm. Thank goodness our friends Brooke and Maggee were there to help make the time go by faster. We also got asked to be filmed by Scottish Rite of us sitting in the floor playing together for one of their promotional videos. After playing for about an hour we had lunch in their cafeteria. Autumn kept beeping and beeping and we could not figure out why...finally daddy re-adjusted the pulse ox probe and that solved all the problems. I guess daddy can fix a few things...lol. We then check-in and waited for our 12:15 appt. We waited for 2 hours to get in the room but in the meantime we met 3 other SB families...one of which was from Odessa. One mom had a SB kid on a trach which is rare to find and we learned they live not far from Rowlett so we got her number for when we move here we can have another contact. The woman from Odessa had an older son and confirmed to us that even as the kids get older and where we live there is just not drs. or resources for them so moving would be a great thing for us. I was relieved how well Autumn's appt. went. The dr. is not convinced Autumn's 2 UTI's were actual UTI's. They called Children's and learned they only did a urinalysis and not a culture and the urinalysis numbers were so low they do not think she needed antibiotics and it was not an infection. They are checking with Midland ER to see what they actually did and see if it was really a UTI or another infection going on...like respiratory. So, they are NOT starting her on daily antibiotics right now and no cathing needed either. Whoo Hoo!!! We will go back in 6 months but in the meantime anytime she has a fever over 101 we are to have our dr. always do a urine culture just to confirm if she's really having UTI's or not. After our appts. we went over to Brooke and Matt's house to hang out for the afternoon and have dinner. Brooke took me on my first trip to Central Market and had me sampling all kinds of new things...there was even some fish I really liked. For those who do not know me, I am a picky eater who hates to try new foods and I like simple, boxed dinners. ;) So, for dinner they made us steak (with this new marinade we tried), mac and cheese (not the box kind), squash with brown sugar and caramel, baked potatoes (she taught me a new way to cook them), and brownies with caramel which I helped to bake since the brownies were from a box. It was all yummy but I still was not sure about the squash...I think I have an issue with textures like Gage and Autumn....lol. Oh, and I forgot about the Wild about Harry's sorbet (is that what it's called) I'm so clueless about food stuff. Anyways, we had a great time just hanging out relaxing. I had to get one more picture of one of Brooke's sons, Bradley doing CPT on Autumn. He saw James doing it and knows Autumn likes it. Her other son, Anderson posed for the picture as well. Next time we get together maybe Gage and Madison will be with us to meet their kids as well...I think Gage would have a blast with her 3 boys...the 2 oldest are talkers just like Gage.
So, we got home a little after 9:30pm so it made for a long day out but it was a relaxing and non-stressful one.