Baby Dedication/1st restuarant

Autumn did great for baby dedication. We took her off her pulse oximeter to take her on stage and just took her vent and oxygen tank with us. She was so heavy in my arms and kept wanting to sit straight up. She was such a good girl.
After church, our family, my parents, Roxane and Mike (Madison's grandparents), and our nurse Becky went to Cracker Barrel to celebrate. It was Autumn's first time inside of a restuarant and the first time to join her family at the dinner table for dinner. The restuarant did great getting us a table in the back corner so Autumn's stroller would not be in the way. Autumn enjoyed eating her mac and cheese, carrots, corn, mashed potatoes, and biscuits. She even used a diaper changing table for the first time as well. So, we are checking off more firsts before her birthday. ;) We were sad though that James' parents live so far away and was not able to be there. It was a great weekend.

Baby Dedication Celebration

Here's a picture of my color coordinated kids for the baby dedication picture we got taken tonight. Tomorrow morning we will be dedicating Autumn at church. It's making a public dedication that we as parents will take care of all of Autumn's needs but mainly her spiritual needs and raise her to know God and hopefully one day she will accept Christ as her Saviour as well. At our church in order to participate in baby dedication you take a class explaining what it means and then the night before dedication is a celebration time for the families. This celebration to put together by a wonderful group of volunteers who serve wonderful desserts and give you a night of reflection time as a parent. A wonderful and talented singer sang a few songs...a few people talked...and then they passed out Bibles and devotionals for the babies. It's just a great time for the parents to be loved on and shown they have an awesome church family who is there to help walk them through this crazy thing called parenting. ;) My favorite part is afterwards when a pastor or elder of the church prays over your family. We asked the senior pastor of our church to pray over us tonight. It meant a lot to us to have him do it because for one our church is so large we actually have never introduced ourselves to him after all these years and I just felt the need to hear his prayers this evening over Autumn. I also met a lady who reads my blogs. It's weird to know strangers read my thoughts and know me so well and I don't know them at all but it also makes me so happy to meet people who read my blog because it shows me so many other people out there care about our little girl and how she is doing. So, if you read my blog and I do not know you please feel free to introduce yourself to me because I would love to get to know you as well.

We made plans after church tomorrow to go our to eat to celebrate and take Autumn to her first restuarant. When I told Madison she was a little hesitant because she hates when people stare at us. I told her that I hate it as well but that it's just something we have to get use to. I told her she would stare too if she saw a baby with a trach and tubes connecting the baby to a machine..it's just normal to be curious. She said she use to stare at people but now she is comfortable with seeing people that have medical devices or wheelchairs. I told her that God is also using Autumn to teach her and Gage about compassion and how even though people may need a wheelchair or medical devices that they are just like the rest of us. I also love when I get the opportunity to tell other kids about Autumn because I hope it makes them more comfortable around other children with disablities. When kids understand they are so much more accepting.

Miss Autumn has been doing pretty good lately. She has decided to not desat anymore on the toddler meals and is eating them up now. I think she just had to get use to the texture. She LOVES tablefoods and even though she does not have teeth she will eat spaghetti, mac & cheese, carrots, apples, green beans, baked beans, corn, peas, and the list goes on. Although the more table food she eats the less baby food she wants and she is starting to get picky about some foods. She has decided she does not like pears or broccoli and only likes mashed potatoes when mixed into something else. She also has started this thing that cracks us up. When she gets excited she squeezes her fists really tight and tightens are body up and pressing her lips together really tight. It looks hilarous!! The week though she also started something I don't like. She's been throwing up everynight after her night feeding. My guess was that is was from her acid reflux so I decided to break up her dose and give her 1/2 in the am and 1/2 in the pm instead of it all in the am. Well, didn't work tonight. So, not sure if that is it or not...James thinks it's because the formula is going in too quickly but we have fed her the same way everynight for months now so I'm not buying that theory. I will try though to feed her slower tomorrow night and see. She occasionally will vomit her morning feed but usually it's the mornings my day nurse is here and we think it may be from moving too much right after her feeds so she's been letting her sit a little longer and so far I think it may be working. I think Autumn just wants to always give me something to think about and ponder. Okay, way too long post and I gotta get to bed for Autumn's big day tomorrow.

Busy 2 days

Madison's 1st day of school

Gage's first day of gymnastics These past 2 days have been so busy that I can't believe it's only Tuesday night. Monday Madison started her first day of 5th grade. Wow...how the time flew by...I can't believe I have a 5th grader...I feel like only yesterday I was in 5th grade. After getting her off I did grocery shopping, returned phone calls (had 17 messages when we returned from Dallas), had OT appt, signed Gage up for gymnastics, took Madison shopping for supplies, cooked dinner, did my homework (each year there seems to be more and more papers for parents to sign), and then got the kids ready for bed. Madison had a great first day and was excited that she gets to switch classes this year for Reading and Math. On the way into school though she saw 2 of her friends and got excited and started running to catch up with them. Well, once her flip flops hit the grass she took a spill and landed flat on her back. She just laughed it off and got up and went into school like nothing happened...I was glad since I was still in my PJ's and no shoes on so I wasn't about to get out and help her. lol

Today I had a WIC appt. to get Autumn set up with her new formula. They had to check with the state though about which formula and see if she was approved. Went by the vet clinic I use to work at to visit. Oh, how I miss working there. It was good to see my old bosses and found out Dr. J use to have a trach when he was 6 years old and I never noticed his trach scar. He said he had his for about a year. Everytime I meet someone who use to have a trach it gives me hope and encouragement that this will one day pass and new people that meet Autumn will never know she had a trach. Sheesh...I've known Dr. J for over 5 years and just learned about his. I then took Gage to his first day of gymnastics. He was so happy for his first day but wanted to learn a back flip. I explained to him that he had to cover all the basics first. Well, he was the only one in the class so he got lots of teaching in and was flying through everything the coach was teaching him. (I have videos but my new camera software is not letting me post it so will have to figure it out later). He had fun but once he realized the class was over and he did not learn a back flip he had a crying breakdown. He's one of those kids who just wants to move quickly and see how much he can accomplish right away. Madison is completely opposite and will not try anything new until she has mastered what she has already learned perfectly. BTW, he scored a 96% on expert on Guitar Hero this morning with a 102 note streak. ;) Anyways, the WIC clinic called back and Autumn was approved so I had to go back and get my card. The formula can not be purchased in the store so they have to special order it each month for me to come pick up. It will cover though all that she needs each month so I am pumped about that...it will save me about $200.00 a month. I then went all by myself clothes shopping...even though I HATE to shop it was nice to just be completely alone for once and I went down 2 pant sizes so that always makes shopping a little better. Came back home to my completely messy house but decided I was just too tired to clean and that will be my plan tomorrow. Have a blessed week.

Just feel like hearing myself type and vent

This post is really just for me to get things out of my head. I have just been feeling really negative lately and trying to understand it. Autumn has a lot of issues but there are so many families out there going through much more than we are so why do I keep feeling sorry for myself at times? I feel like I have this line drawn down the center of me. One side is full of pure joy over my precious little girl and the other side is full of complete sadness of our new life. I'm just so over this stage in my life and ready for the next. I am honored and blessed to be Autumn's mommy and proud God chose our family to place her into. She is inspirational, happy, and funny. She sees happiness in EVERYTHING. Being a mom of 3 I know each child has their own personalities and even though Gage was a pretty happy baby there is just this special light in Autumn's eyes that just beam out when you look at her. I also know we were given Autumn for a reason and would not trade in anything in this world for the changes that has taken place in my spiritual life. I KNOW now just how much God loves us to give us this crazy journey so that we have become to know Him in a much deeper way than we ever had before. The sadness though always wants to creep in through all my joyous occasions. Like focusing on Autumn's first birthday that is now less than one month away. When you celebrate your childs first birthday you can look back at all the "firsts" in their first year. Well, we do not have all those firsts....like the first sound of a laugh or words of mama or dada. The first roll over, sitting unassisted, the first pull to a stand or maybe even the first steps (depending on the child). I haven't even gotten the first time to walk around with my child without wires/tubes attached. Shoot, Autumn hasn't even given me the pleasure of her first tooth....little stink. Instead our first year was filled with crappy firsts like her first surgery--plus 6, first time she quit breathing, first shunt, AFO's, CT scan, radiograph, MRI, IV, medical equipment and the list goes on. It's so easy to get stuck on all the negatives of her first year but I have to remind myself even though she does not have all the firsts like most kids her age she has accomplished much more than most of the babies her age. She may not have great head control but she has worked so hard for what she does have. She may not can check off as many things on her first list but each thing she does check off was due to the fight and determination she has in her. This morning in baby dedication class at church we had to go around saying our baby's name, age, and one word to describe them. Most words were happy, strong-willed, content, laid-back, funny. I proudly could say the best word to describe my daughter was inspirational and most 11 months olds have never had to show fight, determination, or strength like Autumn has and she always does it with a HUGE smile on her face and that is what makes her an inspiration to me. This just goes to show why this whole journey we are on is bittersweet. We get to raise this awesome child but we also have to deal with the daily negatives that go along with it. I have to choose to turn my thoughts from negative to positive each and everyday but it's not easy and I fail most of the time. So, I'm tired of being selffish and feeling down so Autumn's next year is going to be filled with positive thoughts and seeing my life in a new way.

ENT

Whoo Hoo!!! Autumn had her last dr. appt. for the week. These appts. sure do get old quickly. At the end of the year I need to add up how many appts. we had just in one year. Sheesh! Her ENT appt. was fast like always. I'm not really sure why he have those appts anyways? We walked in and they asked if everything was going fine. We told them about Autumn having some thick, yellow secretions the past couple of days and a low grade temp. last night. They asked if she had a stuffy nose and cough as well. Yes, she has. So, they did a scope down her trach...where they put this wire with a camera on it to see how it looks. They said it looks like it's just a cold and to do Xopenex treatments regularly for a week to break up the secretions and she should be fine. We always meet with a different doctor each time we go and never with the actual dr. that did Autumn's tracheostomy surgery. I guess since she only has a trach because of central apnea issues they don't have much they need to do with her but to just make sure we are not having issues and that her trach still looks good. They said her current trach size should last her for at least another year so we are all good there. They also are going to be ordering us another trach. Our DME company said we could only get 2 every 6 months but 1 of the 2 they ordered us was the wrong type so we have had the same trachs since Autumn first got hers in November of last year. So, both her pulmonlogist and ENT will be sending our DME company info about us needing more so maybe this will get them on the ball to getting them for us. Also, Autumn's concentrator has stopped working on us. It's the machine that converts room air into oxygen for her vent so we do not have to use our O2 tanks. Good thing she is only on oxygen when she has desats because I think we have just enough oxygen in her tanks to last through the weekend if she needs any. Our pulmo was also not happy that our DME company has not given us a back up vent to have at home. I asked them about it and they told me as long as they have one in the office that it was fine...what if we were in Dallas though or on the road and her vent breaks on us? So, hopefully we will also be getting that next week also. So, our appt. week is over and we will head back home in the morning. Yea!

James and I also took time to scout out Rowlett, Texas to see if that would be a place we would like to move to. The traveling back and forth is just getting to be too much and James is ready for a job change. So, I think more than likely we will be planning to move to the area next summer. James will need to start hunting for a job and I will have to start figuring out how to change over nursing and DME companies. Rowlett is right off the lake and it was making me sick seeing all the houses with the lake in their backyard...so jealous!!! We are still praying about it all and seeing what God has planned for us. We know these appts. will continue to be frequent as long as Autumn has the trach and we are going to be running out of donated money to help with the expense of traveling and James missing work so we just feel it's time for that change. I do not want to leave my parents though and just when I finally got a day nurse I love and trust it's hard to want to do without or try to find someone I can actually trust. It's all going to be in God's hands though and we just have trust in Him to provide. So, please be in prayer with us about this life-changing decision we will have to make. It would be so awesome to be able to drive 30 mins-1 hour to Autumn's dr appts. and be back in our own beds the same day. ;)

MRI

Okay, I am new to this MRI deal. I thought we would go in at 6:30am and she would be done by 8:30am and then home to sleep. Nope. We got there at 6:15am (I always arrive early) and no one was there. We waited until 7am and then I sent James to go searching around. Well, the sign they are SUPPOSE to leave posted on the desk was not and you have to check in at a different desk in the hospital and then go to radiology. So, instead of being first we were 3rd. So, we get called back and we had to change Autumn's trach because it has a metal coil in it (forgot about that). We got her trach changed and then signed all the paperwork for them to sedate her. I told the nurse that Autumn is a hard stick and they always get it in the left vein on her arm. Anyways, the MRI guy came in and said it will take about 45 mins to do the scan of the brain and an hour to do the scan of the spine. There goes my in and out plan. So, we left our daughter in the care of the hospital and went to Denney's for breakfast. I just wanted to eat in the hospital cafeteria so I would not be far but James said he'd rather leave and she would be fine. It felt weird loading up all her things without her. So, aroung 10:25am they called us back to recovery. Autumn was so upset and crying. They had stuck her for an IV 3 times and guess where the 3rd stick and IV was...in her left arm where I told them the first time. I guess they decided to try her right foot and hand before listening to mommy's advice. My poor baby girl. Anyways, Autumn needed suctioning and I had forgotten that we put a different trach in and still suctioned down to where I always do. Not good because that means I suctioned passed the end of the trach and so it made her bleed a little. :( Anyways, we changed her back to her normal trach before leaving. We finally got back around 11:30am and we are tired. I have had about 9 hours of sleep in 2 days...James is taking his turn right now and then after giving Autumn her meds, making sure she can hold down pedialyte and then feeding her, and giving her a bath and doing trach care I will try to take an afternoon nap as well. Not sure when we will hear the results from the MRI...I'll call the office next week to ask about it. So, 2 days down and one more to go. Tomorrow is her ENT appt. which should be nothing big.

Vent clinic

We had our 3 1/2 hour vent clinic appt. today. Autumn did great like always and did not even cry when they had to prick her finger and get blood twice. Blood gases and chest x-rays were great. We talked about some equipment Autumn needs that we have not been able to get from our DME company...like another new trach, a back-up vent at home, and a vent stand. We also discussed how bad Autumn has been doing at night lately (thinking it's from being so tired without a breathrate during the day). So, we are taking a step back rather than forward and giving her a breathrate of 10 again during the day. We will see if that works to help with the desats at nighttime. They are also changing her formula since she will be a year old next month to Pediasure Enteral with fiber. So, now it looks like we are going to see about getting her on WIC so I don't have to keep paying for formula because if she did not have a button she would be off formula already and that stuff is so dang expensive. ;) So, Autumn had to give bloodwork twice so she would not have to go to the WIC appt. and can be medically exempt. It's a higher calorie formula and can you believe they think Autumn is still underweight..haha. She weighs 18.2 pounds and 24 inches long. That is funny to me because everyone comments on her chunky thighs and big belly. They wanted to make sure we start her RSV shots which is once a month from Oct-Mar. and get her flu shot. So, all went well but I'm dreading the upcoming trips coming up. After this week we will be home for 3 weeks and then back to Dallas..home again for 2 weeks then back to Dallas....home again for 2 more weeks and then Dallas once again...maybe they will let us skip coming in Nov and Dec. but I'm not holding my breath about it. We will be up at 5:00am in the morning for her MRI appt.

Nap

Got a 2 hour nap this afternoon...could of slept 3 but for some reason my body woke up and I couldn't fall back to sleep. Feel nice and rested now.

Still up

So, I gave Autumn her meds at 5:30am thinking I may get to sleep until 8am since I gave them to her early. Her prevacid has to be in her system for at least 30 mins before her morning feed. Anyways, got to sleep around 6am and then Miss Autumn decided to wake up at 6:40. I tried just giving her some toys to play with so I could sleep until 8am. She kept beeping so finally at 7:30 I gave up and fed her. Around 9am I started her nebulizer treatment and she fell asleep. I had to wait 20 mins though for it to finish before thinking I was going to take a morning nap with her. Gage had a mess so cleaned him up and told Madison she was on Autumn duty and to wake me up when she woke up. My head just barely hit the pillow when Madison came in to tell me she was awake. Little stink. After her noon feeding Madison gets to babysit so I can get a nap in before she eats again at 2pm...her 1pm CPT can wait. ;) Madison is such a great sitter and already knows how to suction Autumn and that if she desats into the 70's to turn her oxygen on until she comes back up. She also can tell when Autumn looks dusky and yells for me if I'm out of the room. Her pulse ox seems to have about a 10 second delay so we notice her color changing before the machine even tells us. Mom did offer to come over and help but Madison can do just as good of a job so I did not want her to drive out of her way because James may be home by then anyways.

Autumn now likes to pull herself forward while sitting in her high chair but it always makes her desat because of her straining to pull up..she will find anything to make her beep now it seems. haha

Pointless

It's 5:00am and I think it's pointless to try to sleep right now. My night nurse called in AGAIN and I don't have one scheduled for the next 2 nights either. I went to bed about 11:30pm and so far I've been up at 12:30, 1:30, 2:00, 2:30, and since 4:30. Autumn keeps beeping and she is at a breathrate of 28 and on oxygen as well. I have flipped her and she does not need suctioning. I think it's more tiring to fall asleep for 30 mins and then have to keep getting up and down then just staying up. The problem is James has to go do his assessment for work at 11:00am and then get the oil change in our van for our trip Monday (which always takes forever) so I probably will not get a nap today. I'm tired. Madison and I shopped all day and I did not get hardly any sleep the night before (sharing a bed with Madison). We will have a nurse Sunday night and then off to Dallas with no nursing for the next week and a 6:30am dr. appt so I'm sure by next Friday I will be ready to crash. I think I will have to call the nursing agency tomorrow about hiring a 3rd night nurse. In September neither nurse can do my weekends when James is working so I think it's time to break down and get another back-up even though I hate training and getting to know new nurses. Sweet Autumn has not beeped since I gave up sleeping and came to blog...that's about right. ;) Maybe I will try to give sleeping one more chance and see if I can get in 2 hours before having to wake up to give her meds and feed her. Actually, if I give her meds right now then I can maybe get another 30 mins in??? We'll see.

Have to brag

I just wanted to take a quick minute to brag on Autumn. Her OT came in today to do her evaluation and work with her. Her OT had not been in for about 3 weeks so she was greatly pleased at her progress and all the new things she's doing. Anyways, Autumn is on the developmental age of a 8-9 month old and some things she's doing right on with her age. This makes me so proud of her because she's a determined little girl and has been working so hard to be a big girl. When she first came home in January at 4 months old she was like a newborn and now she's almost on target. Becky "Gea" (her day nurse) is determined Autumn is going to be sitting up on her own for her birthday party. Wouldn't that be something? I remember being discouraged thinking she would never hold her head up and now she's wanting to sit by herself.

Her PMV is a off and on thing with her...most days she can only tolerate it for about 20 seconds and then every once in awhile she can keep it on for about 5 mins. Although when she does have it on she needs her nose and mouth suctioned frequently and you can see she really works hard to tolerate it. It's just one of those things she has to get use to breathing differently with it on and we have to work slowly with her.

I'm also confused about Autumn's eating lately. We started 3rd stage foods and the first week or so she had a little gagging getting use to the new textures but then did fine with them. Our ST wanted us to start toddlers meals and table foods with her. Well, the toddler meals are not doing well and I am pretty sure she is aspirating them because once she actually coughed up the food in her trach and the other times she coughs and desats with some bites. She is doing good with tables foods like waffles, cookies, bananas, pop tarts but for some reason is not doing well with the toddler foods. I have many questions to ask Dr. Gelfand at vent clinic next week. We have also had to go up at night on her vent settings so I need to check about that as well.

So, please say a prayer for us next week as we travel to Dallas with all the kids and Autumn has appts. 3 days straight. Wednesday she will be sedated for her MRI which of course makes me a little nervous being put under and then also nervous what the MRI will show. This will be our first trip back to Dallas since the horrible trip we had in June so I just pray all goes smoothly this time. ;)

Videos I promised

Autumn sitting up by herself

Hearing Autumn cry using her PMV for the first time.

Autumn pulling on her vent tubings...did not get them off this time though.

Autumn admiring her pretty shirt...she now gets interested in what she wearing.

Sweet cries!!!

So, I have yet another video I will post if my laptop ever gets fixed (we ordered the wrong battery and so waiting longer now). We put Autumn PMV back on today and she was making noises and crying!!! She lasted for over 10 minutes with it on as we called people to let them hear. Gage loved hearing her and wants us to keep putting it on her but we have to explain that we have to give her a break because it makes it harder for her to breathe at times. He loves it hearing her though.

I also want to say thanks again to the PD and anyone who has has ever donated money to us. I laid in bed this morning thinking how I have no idea how we would be paying Autumn's medical bills and traveling back and forth from Dallas without the money raised for us. We have been sent to collections with 2 bills and although I wanted to save the majority of the money raised just in case a major emergency comes up with Autumn we have it to use to pay off those debts so our credit is not effected. It's just one of those blessings I think of often and can not express my thanks enough to everyone. What a blessing people have been!!!

Time for an update

I have videos I want to post but when I download them onto my home computer I can not figure out where the heck they are to download them on my blogs...I usually use my laptop but waiting on a new battery so as soon as that comes in I will post some videos. I am so excited how Autumn has been progressing lately so I just had to share.

Autumn is learning how to sit up with pushing her hands to her knees or on the floor. She will last a few seconds before falling over. I am sad to say I did not know she could do this until my nurse showed me which made me feel like a daycare mom who misses out on so many things they wish they didn't but I am thankful she's being worked with during the day and learning new tricks for mommy. PT brought in a bench yesterday and we just sat her under the bench and then let her use her arms to steady her and she would sit for a while without falling over. She is still learning and trying to get strength enough to catch herself when she's falling. I wish you could see her face during PT sessions...she has pride beaming from ear to ear on what a big girl she is becoming. We are going to up her PT sessions starting next month and start working on getting Autumn in a standing position. I have to say I've noticed that her feeling seems to be getting a little lower under her knees than it was before so you never know what she's going to be capable once she gets more PT.

Today in speech Autumn was given the go ahead to try table foods since she has mastered all the 3rd stage baby foods without gagging anymore. I am afraid to give her some table foods because she still has no teeth but the ST gave me some suggestions on what to try. So, tonight I gave her a biscuit and some eggs. She was unsure of the biscuit at first and kind of gagged but she loved the eggs. After the eggs she tried the biscuit again and liked that as well. I then let her have a couple of like of my fudge pop. When I was just about done I gave her the stick to put in her mouth but she grabbed the stick with her hands so I took it away to clean her hands off and she threw her first temper tantrum of getting something taken away from her. Being that she has me wrapped around her finger I quickly gave the stick back and she grinned so happily at me. What a brat but she such a cute one. I am still having a hard time getting her interested in cups so I have a few more ideas to try that her ST suggested today. I want her to practice with a cup before we schedule another suck/swallow study so we can truly know if she is aspirating still or have the okay to drink whatever she wants without having to use her button anymore.

It's official that Autumn and Gage wear the same size shorts....12 months. I wrestled him down the other day and put one of Autumn's dresses on him to see if he could wear it and sure enough it fit but looked more like a shirt than a dress. He wouldn't dare let me take a picture....he's all boy now. Maybe knowing his sister is the same size will motivate him to eat more...we will see. Let's see...Autumn is also starting to mouth mama even though there is no sound to it and she makes noises with her spit in the back of her mouth. I figured out how to get her PMV (speaking valve) to fit on her vent circuit and tried it out for the first time today. She tolerated it for about 20 seconds before we had to take it off. It causes more pressure so some kids do not like it...we will have to be patient and just work with her a little at a time.

I think that is about all the new stuff this week and will follow up with pictures asap. Oh, I am in the planning mode of her first birthday so that is exciting...I wanted to have a big deal and invite EVERYONE but now it's going to be a smaller thing just for family and close friends because of lack of space but all my blog readers will get to see pictures and feel like you were there. ;) We are going to do the princess theme....all girly! Thanks for reading about my rollercoaster life and caring about our little inspiration.

Blogging

It's 4:30am and I've been up for almost 2 hours already so I decided maybe if I blog I will get my thoughts off my chest and can go to bed. I blog for 2 reasons, the main one to update family and friends about Autumn and the second reason is my journeling for my soul. Why though do I choose to journel my thoughts for everyone to read? Good question. I think it's for 2 reasons. One I want those you are not "special needs" parents to really see the ups and downs a special needs mom goes through and have more of an understanding of us. Secondly because as a Christain I want others to see how I struggle (as all Christians do) with the battle of flesh and spirit. Also, my spiritual life can not be separated from my life because that is who I am so there is no way of me talking without including the spiritual ups and downs I have as well. Make sense? So, I'm having a heavy heart this week...I know I should be praying and reading my Bible right now but to be honest I am a little mad and frustrated with God tonight so I have chosen to be rebellious and blog instead. Stupid choice but honest feelings. I know God understands though...he's kind of loves me unconditional that way. Will never comprehend as to why but he does. I see a pattern going on with my ups and downs about being a special needs mom. When I am secluded from the world I do not struggle much with my life situation but once I get around people more that is when the pity party begins. Now I understand why I do not see so many special needs kids and families everywhere I go. I know there are thousands all over because I see them in the hospitals but you hardly ever see them in your daily routine. Tonight was family swim night at the church and it's so hard to enjoy it when one Autumn can not be there and then my husband is always absent for things like that because of his job. I feel like I am being robbed of Autumn's childhood because she can hardly go anywhere with us but I do know that one day she will be able to and when those days come we are going to be making up a lot of memories lost. This is where somedays I get frustrated with God because I have no doubt in my mind he just needs to say the words and Autumn will be off this vent and the trach gone but I know he's choosing not to do that because he wants to teach us some "lesson" blah,blah,blah....I want the lesson to be over and into a new season but it's not His will at this time so I can complain and be mad all I want but that's not going to change a thing. This brings me to another thought....how to make me thankful I just try to see the blessings he has laid infront of me and see that we should be thankful because our life could be like "so and so's" Well, I've come to learn we are now that so and so family...people can look at their children and be blessed for their health because they could be dealing with what we are going through....I think it's great God is using us to open others eyes to be more appreciative but I am ready to be that "normal" family with the husband, wife, and 3 kids all together splashing in the pool. Sad though that is really not the normal anymore since most families have one parent missing even if there are the 3 healhty kids. Okay, back on track now. I think this week is extra hard because James and I are both sick of his job and ready for a change. We feel stuck and optionless right now. Not really a good time to move to Dallas because of Autumn (really don't want to deal with new nurses)and don't want to leave the support of friend and family but James can not find anything else here either. Our initial plan was for him to hopefully quit the police department when we had Autumn but then when we found out about her medical issues it was not an option anymore. James feels called into ministry but circumstances has kept him from being able to pursue that calling right now and we are both getting weary and impatient about it all. As a cops wife I hate worrying if I will see him everynight after his shift and if I will be getting that knock on my door but since having Autumn it's kind of a bigger fear because I really do not want to be left alone trying to raise a special needs child on my own. He's completely tired of stress of being a police officer and all the crap they deal with each and every night. I think he's been surrounded by negative behavior which he really can do nothing about except arresting people over and over and needs to be in a more positive atmosphere. I could not imagine doing what he does night after night and I think since he's been doing it for about 10 years now he's so ready for that change and the new chapter in his life to begin. He also gets so frustrated because he can never get involved as much as he would like with the church because his days off change every month....plus he missing so much of what the kids and I do because he's always having to work. He's out of paid time off so now we are to the point that our day nurse will be taking Dallas trips with me and he will be missing those crucial appts with Autumn. It's just been coming down heavy on us and we are ready to see some light at the end of the tunnel. I apologize for this e-mail....sounds so depressing but it helps to share and I know there are many of you who will be lifting us up in prayer when we are at loss for words what to pray about anymore. Please note that I know tomorrow is a new day and God will renew us and we never stop believing in Him....we jsut hit some weary bumps along our paths.

Shunt concerns

Having a shunt is no big deal until you worry about it not working. I'm sure this is something I will be dealing with a lot during Autumn's life. So, not sure right now if Autumn's shunt is working or not. She's having some signs of malfunction but the signs could be of sickness also. First we always check her soft spot and it is not has sunken is as usual but then again as she is getting older I wonder if we can tell by her soft spot anymore. Yesterday morning she threw up after her morning feeding but I used a different extension to put the formula in so it went in faster could of made her vomit (vomiting is a sign of malfunction). She also was only awake for an hour before going back to sleep for 2.5 hours and did the same thing this morning (another sign of malfunction). BUT we have been having lots of rain at night the past couple of weeks and everytime it rains she gets wheezing, coughs, and little worn out from her allergies. So, I'm wondering if that is why she's tired. Then I hear one SB mom say that her daughter was coughing more when her shunt malfunctioned because of the Chiari malformation...so is that why she's been coughing? She has also needed oxygen at night for the last 3 nights and that was the only way we knew her shunt malfunctioned last time but is she just needing the oxygen because she's extra tired from her allergies. During the day she acts fine but she did in the past with a malfunction. So, the stress is not knowing. She is scheduled to have an MRI done in 2 weeks so we will just keep an eye on her until then and if she gets worse we may have to leave for Dallas sooner to get it all checked out. Please keep her in your prayers and let's pray it's just these weather changes and allergies that is causing the issues (another reason she could need oxygen).