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.

Going to Dallas

Thought I would let you all in on seeing how I pack for our fabulous Dallas trips each month (or every 2 weeks). This is our large suitcase with some of Autumn's supplies.

I also had a picture of her smaller suitcase which has her outfits, bottles, and meds but I accidently deleted it and do not feel like uploading it again.

Here's my pile on the couch of things that do not fit in the suitcase to be packed up.

Our luggage and oxygen concentrator all ready to go
Duffle bag that I have to pack up last...it has equpiment and plug-ins she needs for her equipment.
Here's the car all packed and ready to go. It takes up the entire 3rd row of our minivan.And of course Daddy and Autumn ready for the LONG drive.
Our home away from home...I think I've lived here more than my own house this past year. My FAVORITE niece Haley always gives up her room for us while we are here.

The trip this time took us 7.5 hours instead of the normal 6 hours. I was nauseated, shaky, and jittery for the first half of the trip so we had to keep making stops for me to get out of the car. I think it was the caffeine in the medicine I took this morning in combination with my motion sickness even though I was the one driving. I guess it's God's way of proving to me that I absolutely HATE this drive and that it's really His plan for us to move here...lol. Anyways, this week plans are....Tuesday Autumn has a renal ultrasound and then urology clinic...praying they just put her on antibiotics and that we do not have to start cathing her. We are then having dinner with friends (their daughter is the one with SB as well). Wednesday we are going to drive around Rowlett and scout it out to make sure that is where we want to move to...James may talk with the PD there and Rockwall. Thursday we plan to hang out at my brother's house and relax...we may have to take a trip to the mall though because I hear they have a bullmastiff puppy at the petstore that I MUST get my hands on..hope it's WAY overpriced so I won't be tempted to take it home. Friday Autumn has an eye appt. that morning and then back on the road again...praying that if she needs correction to her right eye that glasses will be the answer and not surgery. I will be updating all week so keep checking back.

Autumn update

Autumn started running a low grade fever Friday but it would come and go. You could tell her allergies were bothering her all weekend. Well, Monday and Tuesday she started doing better and no fever. Tuesday morning she woke up with a 101.5 so I called the dr. I was thinking it may be another UTI or something. Well, it was an ear infection. She has run fever non stop since....even with alternating Mortin and Tylenol. The temp would go down a little but not copletely away. Finally though at about 5am this morning the fever went away...she had a 99.0 temp just a while ago and can not get comfortable. The past 2 days she's pretty much just laid there and has not even wanted to raise her arms to play with anything. The antibiotic has also given her diarrhea so she was miserable. Praying she back to normal before Monday since we head out of town for more dr. appts. She will be getting her flu shot this afternoon so hopefully she will be somewhat protected for next week. I'm having a hard time trying to find Gage a flu shot. He's pedi is out of it and he's on a waiting list. Madison and I will be going to Walgreen's this afternoon to get us taken care of. James decided he does not want one this year because they always make him sick....he will just have to stay COMPLETELY away from Autumn if he gets the flu this year. I pray though the flu bug will pass by our house. ;)

October is Spina Bifida Awareness Month

What is Spina Bifida?
During the first 28 days of a pregnancy the brain and spinal cord of developing baby form. Spina bifida is a neural tube defect and it occurs when the central nervous system of the developing baby fails to form normally at some point along its length. This can occur anywhere from the brain to the end of the spinal cord.

Why does Spina Bifida occur?
The causes od spina bifida are unknown. Some researchers have discovered that folic acid, a common B vitamin, can help reduce the risk of having a child with a neural tube defect. Women who take folic acid daily for at least one month before pregnancy will reduce their chances of having a baby with spina bifida. The FDA recommends that ALL women of child-bearing age take 0.4mg of folic acid everyday.

What effects does Spina Bifida have on a baby?
Spina bifida is a very complex birth defect and it affects every baby differently. There are different types of spina bifida and each child is affected at different levels. Some issues spina bifida can cause is hydrocephalus, Arnold Chiari II Malformation, tethered cord, bladder and bowel functions, orthopedic problems, eye problems, and skin problems, just to name a few. There is no cure for spina bifida.

My personal thoughts on Spina Bifida?
Although children with spina bifida can have numerous medical issues they can also grow to live normal lives. They may need a little extra help like a shunt, braces, therapy, walkers, wheelchairs, casts, or even trachs but most all have average or higher intelligence and will live productive lives. There are more surgeries and dr. appts than a normal baby but in return these children give inspiration and LOTS of love!!! Many parents are faced daily with the option to terminate their pregnancies when they find out they will be having a child born with spina bifida. The news of having a special needs child and the fear of the quality of life their child will have and the lack of knowledge about spina bifida from doctors makes these parents feel hopeless and confused as what to do. Some parents are overcome with guilt thinking something they did or did not do caused there baby to have this defect. The purpose of Spina Bifida Awareness Month is to inform these new parents-to-be that their children will be more normal than they think and that they will NEVER regret the decision to carry on their pregnancies. Once they see their little miracle for the first time they will know instantly their child was made for a purpose and they were chosen to be their child's advocate and biggest fan.

So, if you know of someone who is thinking of becoming pregnant pass on the folic acid information or if you know of someone who is learning that their child already has spina bifida, encourage them to get informed and talk with other parents who have children with spina bifida and see just how beautiful these children are.

Thanks to Autumn who has changed my life and taught me so much in just one short year. She has shown me there is more to life and has made me so thankful, appreciative, and blessed of the little things in life. She has given me purpose and direction. Our family has been changed in many ways because of Autumn and we say thank you....there are hard and challenging days but your joyful personality and strength make each and everyday worth it. We love you so much!!!