DEVASTATED

I am so upset, devastated, and mad. I just found out that the rescue group that I sent Sophie (my bullmastiff) back to decided to put her down. They said she declined in her behavior and since she was 7-8 years old they could not find a suitable place to adopt her so they made the decision to put her down. WHAT??? I can not believe they did not call me first, I would of done ANYTHING to keep her or find her another home if I knew the only option was to put her down. I e-mailed them back and told them how disappointed I was and I wish I was notified. I thought they were the one place that would make sure she did not get put down, if I wanted her to be put down I could of just taken her to animal control. So, I bawled and bawled. The kids do not know of course and hopefully they will never find out or ask. She was my baby and I can't believe it.

Well, today has been a kind of depressing day for me even before I heard about Sophie. I just feel a little overwhelmed and reality is sinking in a little more since we have been home for a week. It is the little things in life that I am realizing will be changing. First, I can't EVER sleep in again. I will now be waking up at 6:45am every morning but the positive about it is that I have my quiet time every morning to spend with God. Next, I realized I can't even step outside of my house because I will not be able to hear if Autumn goes off and I need to be close enough to run to her when she does. Even doing small household chores has become harder--I can't vaccuum because I can't hear if I do, when I do laundry I can't hear and I have more the monitor to whichever room I'll be in so I can see if Autumn is crying. Today Gage wanted to show me something he drew on the computer but since I was holding Autumn I could not walk into another room. I want to put Gage in gymnastics but it is in the evenings so if James is working someone else would have to take him and I could not go watch. So on, so on, and so on....I'm giving myself a pity party today. Earlier I was even thinking what if it was only me and the kids home and one of the older kids breaks a bone or something. What would I do? Can't run them to the hospital because I have Autumn. I know these are things I don't need to worry about but I feel like I need a plan because emergencies like that are very possible. I was just looking at Autumn laying on the living room floor after moving ALL her stuff from her room to the living room thinking how am I going to do this for 4-5 years. I just asked God if it is His will to heal her brainstem please do it soon so that we can get rid of this vent and trach. If it's not His will then to please give me the strength to do this day after day. I realize it is harder on me the days James work since I have Autumn alone from 7am-1pm and then again from 3:30pm-7pm. I'm just drained and can't get much accomplished during the day and by the time my nurse gets here in the evening I just want to rest my mind and body and do NOTHING. So, please keep saying a little prayer each day for our family to adjust and to not get worn out each and everyday.

My heart got pumping this morning

First off-Autumn did great all day yesterday no oxygen with 100 saturation all day and needed a little oxygen all night. Her head went down more but she still has me confused.

So, Autumn has different kinds of apnea episodes. The most frequent are the ones where she got into the 80's or 70's and comes right back up (sometimes a little more slowly). She has these quiet frequently during the day and night and there is nothing we have to do about them but silence the alarm until she goes back up (within seconds). Since she has been home she has been having these episodes where she goes down anywhere between 20-70 and turns a dusky gray color and her lips turns a blueish tint. During those episodes we turn on or up the oxygen and stimulate her by rubbing her chest and she will come back up usually within a minute or less. During these episodes she really does not look like she is in respiratory distress because she is still taking breaths and looking around (besides turning a grayish color). I always stay calm with these episdoes but I am wondering why they have become more frequent this past week. Maybe it is because we only have her on oxygen when she needs it and we turn it off as soon as she sits at 100 saturation because we don't want her getting more oxygen than she needs but at the hospital she was on it a lot more. Well, then there are the episodes like she did this morning that really gets my heart pumping and on the border line of panic. I gave her a bath and she was doing just great. After her bath and I got her all dressed I was getting my supplies ready to do trach care while she was laying in her bed looking at herself in the mirror. Well, I move her to the floor for trach care since her mattress is so low it is hard for me to do it by myself in her bed since I have to use my teeth to pull the ties off since I only have 2 hands. :) Anyways, as soon as I got her on the floor I noticed she was getting blueish so just as I looked at her monitor to see if her stats were falling she was going down quickly. I turned on the O2 as high as it would go then grabbed her up to prop her body up and stimulate her. This was not working and she was big eyed and looking like she was struggling to take a breath and trying to get something out like a cry or a breath. So, I quickly laid her on her baby bed to grab the ambu bag to bag her but then she started turning pink again and coming up. When I was reaching for the bag I was thinking okay do I just grab the bag and start giving breaths or do I scream really loud for James to wake up (that was my borderline of panicing). Anyways, she started turning pink so I did not scream and instead I suctioned her to make sure she did not have a plug in her trach. I hate to suction first since when she is suctioned she goes down even more but if there is a plug suctioning is the only thing that will help her to breath again. This time there was no plug and suctioning did not get much of anything. After her stats came up I waited a few minutes and then did trach care and she did just great. Since then she has been on 0.5 liters of oxygen and is sleeping peacefully. It is kind of crazy to have such a scary moment and then a few minutes later going about business like nothing ever happened. I know if it was one of the other kids I would be a wreck the rest of the day but knowing how Autumn is I guess I am use to always being on my toes. I guess that is why I am just so much more tired during the day since I always have to be thinking and making decisions about when she needs more O2, when to suction, and all the other million things going on with her. She is completely worth it all though!!!

A little concerned

I am a little concerned that Autumn's shunt may not be working again. She has been desatting a little more and has had at least 1 big episode a day and yesterday she was on oxygen all day and night. Her soft spot looks a little swollen as well and not as sunken in. I hate worrying all the time about every little thing about her. We are so far from Dallas so it is not like I can just run her to the hospital to have the neurosurgeon look at her. Please keep her in your prayers. I am hoping it is just because of the cold weather or something that is causing her to need more o2.

Everything else is still going good. Yesterday morning Gage took care of Autumn and entertained her for about 20 minutes playing in her bed with her. Too cute! Afterwards, Autumn laid in her bed for an hour without her paci and just watched her toy and did not fuss one time. I was amazed since I have never had a baby this laid back and content before. She is so precious--I just want to eat her up!!!

Our first transport

Today Autumn had her first dr. appt with her peditrician. It was about 25 degrees outside so we had to load her up and try to make our appt. on time. I really wish someone had a video camera to watch our whole ordeal. :) They delivered her lender stroller before her appt. so we could get her all strapped in but we ended up just using it to place all her equipment on and did not put her in it since it was too cold outside to move her from the car seat to the stroller. Anyways, we get to the office and we have her in the car seat, her diaper bag, my purse, a bag with her emergency stuff, her suction machine, the car size back-up battery, the vent, pulse ox machine, and o2 tank. We are trying to load everything on the stroller when we realize we forgot the adapter that hooks the vent to the back-up battery. So, we load everything on the stroller and James is rolling the stroller and o2 tank while I am carrying Autumn in the car seat. HE dropped me off in the waiting room and had to run home to get the adapter (good thing the vent has a 45 min built in battery). So, the waiting room was filled with people and Autumn's vent kept beeping power lost. I was trying to fill out all the new patient paperwork and every couple of minutes her vent would beep and I would have to keep silencing it. When James returned he could not find the adapter so he brought the power cord for the vent that has to be plugged into an outlet. He also brought in the car size back-up battery (which we could not use without the adapter), and the base for the pulse ox machine because he thought the internal battery would die before we got back home. Anyways, I made him take most of it back to the car since we already looked like we were moving into the place. HA! Well, she did great during her appt. and still does not react when she gets shots in the thighs. She moves her legs like she may feel it but her face does not change at all. Anyways, so we are good for a month before we have to go anywhere again. :) I hope our stroller will be in by then so there will be more room for all of her equipment and we may have to do another trial run before we head back to Dallas for more appts. By the time we got home both James and I were exhausted but w survived. I really like her new peditrician and he even gave us his home and cell number to call anytime we need anything and it's a good thing his office is just down the street. :)

Here is a picture of the cute cookie bouquet my sister-in-law, Shelley sent us. Yummy!

Too early

Okay, so I have been on hospital schedule were I would sleep until 8am everyday. Now that we are home I have to get up at 5:45am to let the nurse leave. This is going to take some getting use to. I am glad James is home during the day so that I can take a nap when he wakes up. It is a great time though to do my devotionals, check e-mail, and blog.

Things are still going great. Autumn had one big desat yesterday afternoon into the 20's but we just gave her a little O2 and she came back up on her own. Madison is having a great time spoiling Autumn. She changes diapers, feeds her, helps bathe her, and gets her dressed for the day. I guess it is fun to be 10 and have a live baby doll to play with. :) Gage really does not pay any attention to her. He likes to empty her water trap on her vent circuit and throw away the dirty diapers. He will also give her the paci when she loses it but other than that he is not interested in her. It will be interesting to see how I manage weekday mornings with just me, Gage, and Autumn. Over the weekend Madison helped alot taking care of Autumn while I took care of Gage's needs. Yesterday morning it was time for Autumn's meds so I got them all ready and gave Madison them to give to Autumn. Well, while she was doing that I was trying to give Gage medicine since he woke up with a horrible cough. So, Gage is refusing to swallow and then he decides to just open his mouth and let ALL the medicine and the big drink he took to run down his shirt and my legs--at the same time Madison is screaming at me because Autumn was spitting out her medicine as well. So, Gage got a spanking and had to take all his medicine again which he did without complaing and then I had to clean up Autumn. I decided I will be doing one thing at a time now.

We already have a pretty nice schedule going. In the mornings after Autumn's treatment, bottle, and meds I give her a bath and get her ready for the day. I then do trach care and move Autumn to the living room to spend time with the family. She hangs out all day there so I can clean and get things done and still be able to see her. When James gets up I am off for my power nap. :) In the evenings the nurse gets here so that is when I take the time to spend with Gage and Madison and do some working out. Okay, so I have only worked out once. :) I can tell though that sitting at home everyday is going to get old. I can't wait until the spring so I can at least take Autumn for walks and to the park. I am sure Gage is really going to get tired of being home bored as well so we will just have to get creative during the winter months to entertain ourselves. I am glad we have the Wii to play on. Well, I have blogged long enough that it is time for Autumn's 7am treatment. Have a blessed day--I know I will!

Autumn's Home Pictures

Autumn's Room (before equipment)
Waiting for sissy to get home

Some of her equipment that goes with her to every room

Arriving in the ambulance

Unloading her to go inside

In her own bed

Bubba holding her

Big Sister holding her

In a swing for the first time


We are so thankful and blessed Autumn is finally here with us.

Our first day/night home

It's really true--Autumn is home!!! It finally seems real and so far the transition has been smooth. She got home around 2:00pm yesterday and it was me, my mom, Madison, and Gage here to greet her. The ambulance drivers brought her in and James and I got her all set up, plugged in, and comfortable in her own bed. :) I say she looks much cuter in her own room. They left then about 30 minutes later the home equipment lady came and dropped off the rest of the supplies and we did paperwork and then she left when the nursing lady got here. We had about 3 hours of paperwork with her. We met 2 of our nurses yesterday. One came for about 3 hours and then the other one came from 6:30pm-6:30am. I really think we will like our nurses. The guy nurse we had last night asked lots of questions on how we like to do things so he could do it like we wanted.

Autumn did great on her trip here, she needed no oxygen. She only used oxygen for about 1 hour last night while sleeping--YEA!!! We really have not had any just family time yet but I know that will come soon. We had just a couple of visitors yesterday and I know we will have a little more today. As each day goes by I will not mind more and more people coming over to see her so visitors can just call and see when a good time will be to stop by.

It is 6:45am and I am just sitting here in my quiet house while my kids sleep--feels great! I am really suprised on how laid back I am about Autumn being home--I am not nervous at all-I guess all the time and teaching at the hospital really prepared me. Later today I hope to get a chance to post some pictures of Autumn coming home but no promises. :) Our nurse will be back at 3:00pm today. It is kind of weird having someone in our house but I think I will get use to it soon enough. I think it will be a big relief to know I can have dinner and not have to constantly get up to check on Autumn and I can have time each evening to relax with the kids. We should have nurses daily from like 6-6 or 7-7 and at least once a week we will have a shift for 3pm-7am care. I will also get my alone time all day with her which is something I need. :) Well, I better start organizing the room and getting ready for my LONG day.

Autumn is almost here

Autumn is about 3 hours away!!!! Madison and I kept talking how it seems so weird that she will actually be home today. I had a migraine this morning but after 4 tylenol and an Aleve I am feeling better. I am not sure if I will get time to post this evening but I will post as soon as I can. :)

Home on Friday

Yes, we are coming home Friday for sure. Our home equipment arrived just in time on Tuesday for me to start my 24 hour room-in. I have finished and we are all ready to go. I will come home Thursday to get things prepared and Autumn and James will be home that afternoon. YEA!!! I still can't believe it is real. I am sure things are going to be stressful at first but hope we soon get into a routine of things. Our home equipment is much bigger than what we were trained on so I am feeling overwhelmed but if it's getting us home then I am smiling and will deal with it. :) I am amazed our DME company got everything together so quickly and thankful for it. Nursing will start on Friday so that will take some of the stress off the first night. I'm just feeling so blessed that all 5 of us will be sleeping under the same roof. Autumn has been doing great and even smiled really big for daddy today. We received our list of dr. appts. we have coming up and it is also overwhelming. It looks like we will be back in Dallas for 4 days in February and another 4 days in March--I'm not sure how well that will work but I guess we will deal with it when it comes. The great news is we are going home FRIDAY!!!!

Monday post

Things have changed slightly since I last updated. I am meeting mom today to get most of our home equipment--the vent will be here tomorrow. Medicaid denied us a flight home and so did insurance but Medicaid did approve an ambulance ride home. So, now we are planning on leaving Friday at 8:00am. Everyone here keeps telling us they will make sure we are gone this week no matter what because they know we are so ready to be home.

I know there are many people who are going to want to come visit Autumn and we are eager to show her off. I do ask though that we have no visitors for a few days after we get home so that we can get settled in and everything worked out with nursing before having so many visitors coming in and out of the house. Once we get all settled and the stress of adjusting to new things settles in then I will blog letting everyone know we are ready to have visitors. Thanks for your understanding in waiting to meet Autumn. I will update if things change from now until Friday. i can't believe we will be home in 4 days!!!!

I want to SCREAM!!!

Our DME company called today and said that they had to send the vent off to get serviced and so they will probably not get it in Midland until Tuesday which would mean we would not get the vent in Dallas until Wednesday which would then mean we could not go home on Thursday. I was so upset that I just had to give James the phone so I could just sob. I know they are trying everything to get it to us ASAP but telling me that I will have to be in the hospital 5 more days makes me want to scream, cry, and go to extreme measures to get home. I'm just spent at this point. Anyways, after getting it all out we got a call back an hour later from our DME company again. They said the vent is being serviced in Burleson and they will try EVERYTHING to get it to us on Monday. Our pulse ox and suction machine is still in Midland though but they said mom could probably pick it up on Monday morning and meet us in Abilene to get it here ASAP as well. There is still the issue of insurance approving the plane ride home but I am to the point that I don't care how much I have to pay I am getting her home. So, we may still be on track to leave on Thursday or maybe Friday if we beg the doctors to release us and if they will not release on Friday if the equipment comes late then we are stuck until Tuesday. So, I will let you know when we are coming home when we are actually walking through our door since for some reason it seeems impossible to get our baby home.

I did have a good birthday even though I did not get to see my kids and had bad news. People sent cards and gifts here and my cousin Steph made me a 30th birthday video. She went down memory lane of my last 30 years and video taped my family and friends saying a birthday message to me. It was great to see some family that I have not seen for months and even better to get to see the kids telling me happy birthday. Gage wished me a happy 24th birthday so that made me feel young and Madison and Jordyn danced for me. Thank you to everyone who left me a message on the video--it made my day brighter. Autumn also gave me a birthday smile this morning when I started talking to her so that was also one of my best gifts.

I'm 30!!!

I can't believe I have hit the number 30. I remember being a little kid and thinking 30 was so old. I am really excited about what my 30's have in store for me. I finally feel confident as a Christain woman and mother. I know I have lots to more to learn and that I don't know everything. I have learned that I am not perfect but I will strive to become a much better person everyday and I also know there will be many days that I will fail. I do not care anymore about impressing people or how I look on the outside (even though I do need to lose some weight). I think I can know not stress on the little things in life but just focus on being the best mom and wife God has created me to be. When I turn 40 I will have kids that are 20,15, and 10 so I want to make sure I spend the next 10 years just enjoying them before they leave my home and trying to teach them the real importance of life. When I was 20 my goal for 30 was to be a mom and wife and just be happy. I never thought I would have a special needs child though that would show me there is so much more to life then thinking about myself and my goals. I have seen people love us and I want to be more like those people and start giving more love back. I not only want to focus on my family but making a difference in other people's lives as well.

Well, I am off to the hospital today and then my brother and sister-in-law is making dinner for me tonight and then we are going to go see Mall Cop. I just wish I was spending the day with Madison and Gage also. :(

New dismissal date

Okay, everything is now back in order and we have confirmed our dismissal date. We are leaving on Thursday, January 22nd (Autumn's 4th month b-day). We are back with our original nursing company and they are going to provide 16 hours of mursing care on the days James works from 4pm-8am and then on James' days off they are going to provide 8 hours but we are going to discuss the times later. We should get our home equipment Friday and so I can do my last room in before Wednesday. We are just praying nothing major changes from now until then. Autumn had an assessment done with MDCP today to get her in a nursing home so after we get settled at home then we will go that. I am so excited and keep praying nothing changes because I can't take anymore. :)

Making some progress again

Our new DME has us back on track with our supplies and hopefully we will get them by Friday and that will still get us going home next week. We have a couple of prospects for nursing but going with one company will take more time so I really don't want to use them right now. I am going to call our original company today to see how much nursing they still have for us whether it is evening or day. I have convinced our dr. to let us go home with only 12 hours of nursing into place. He still wants to keep our order for 24 hours so insurance will give it to us if we find more nurses once we get home but he feels comfortable with us trying to do 12 hours since we have my mom to help and since James' work schedule has him home with me during the day. I just really hope that the nursing company has not reassigned our nurses and is still trying to work with us (she said she still was going to be looking on Monday). So, that it the update for now but around here everything chances within minutes.

AGGREVATION!!!

Yesterday turned into a very frustrating day. We first found out that our DME company dropped us because they only have one part time RT and can not handle another vent case. They knew what needs we had 3 weeks ago so I am not sure why they even told us they would take us in the first place. So, I called Alliance to see if they could help us out and so now they are working on getting everything ordered, insurance approved, and delivery. A couple of hours later I learned that our nursing company was going to drop us as well. Apparently the main night nurse backed out yesterday and so they do not have enough nurses to staff us. I called the company to see how many hours they could do because I am ready to fight with the doctors to send us home on 12 hours instead of 24 hours of nursing care. I called Alliance back to see if they could help us with nursing so they are checking on it today. So, here we go starting all over again. I am now to my breaking point. I am getting home next week no matter what it takes!!!! I am more than capapble to taking care of my daughter myself. We do everything anyways at the hospital. I just need a nurse at home long enough to sleep and I will be good for the day. My mom is now a full-time grandma and is willing to help in any way she can. I am so ready to get home because Madison and Gage NEED me home. I know it will be hard but Autumn is now my full-time job and I am willing to do whatever is needed to get her home and us back to a normal routine. So, we are about to head back to Baylor this afternoon and we are going to figure out what needs to be done to get home ASAP. Insurance is still trying to approve things but my thoughts are I don't care how much money it takes out of our pockets we are getting her home with what we need whether insurance wants to pay for it or not. We have been here too long and it is time to come home!!!

Surgery went well

Just wanted to let everyone know that Autumn's surgery went great. They only had to replace the shunt tubing in her head and now her incision is a little larger than it was. She recovered just fine and was wide-eyed and awake as soon as she got to the recovery room. They gave her a little morphine since she was crying a little and her blood pressure was high. She though seems like she is in no pain. She took some pedilyte by bottle as soon as she got back to the room and held it down so she can have formula again whenever she wants. By Wednesday we should be able to wash her hair and she should be going back to Baylor tomorrow. She is already at room air and not needing any oxygen so hopefully the surgery will be the answer to no more oxygen. We'll see. I also found a nursing home in Monahans that will take Autumn for the MDCP program to get us on Medicaid. They have 2 beds open right now so hopefully we can leave from Baylor--go to Monahans and then back home. They only require us to stay in the nursing home from 9:30pm-12:30am and then we can go back home. YEA! So, Autumn looks great and things are back on track.

surgery update

Autumn will be having her surgery at about 7:30am in the morning (Monday). It looks as though the shunt has malfunctioned in the head part so they will just replace that part unless they get in surgery and find out the whole thing needs to be replaced. If she has no complications then she will be able to go back to Baylor on Tuesday and hopefully we will still get to leave on Jan. 20th. I am exhausted since I only got 3 hours of sleep at the hospital so I am getting to bed early tonight so I can be at the hospital bright and early in the morning. I will probably not be able to blog again until Tuesday unless the library at the hospital will be open to get on a computer to update everyone. Please pray everything goes well.

Going back to Children's

So, Autumn had her CT scan today at Children's. We got the results back and her shunt has malfunctioned. We are now waiting for a bed to come available at Children's so they can transfer back there and we are waiting to find out when her surgery will be to fix the shunt. They said the recovery time is about 48 hours and then we will head back to Baylor. So, my new plan is to hopefully get the surgery done, head back to Baylor by Wednesday, and do my 24 hour overnight and get to come home still on the 20th instead of the 15th. But, God always has a different plan than I do so we will see what He wants to do. I am bummed we won't be home for my birthday but if it is because of Autumn's health then I understand more than if it was because of insurance issues. Everything else is coming along well. Since we have a little more time before we go home we may find a nursing home to go to before our trip home but we'll see. I will post when I know when Autumn's surgery will be (if I get a chance) and what it will consist of. So, our hospital sentence continues.......

Big favor from everyone

I want to keep a record of everyone who has followed us through this journey with prayer, support, and gifts. If you would please send me an e-mail with your name, address and/or
e-mail. Even if we have never met you I would like to hear from you to see how many people have been praying for our sweet little Autumn. I would also like to know how you first got to know about our family. I appreciate everyone who has had us in their thoughts and would one day like to show to Autumn the LONG list of people who have thought about her since before she was born. Thanks to all! Please send to llwilliams8@grandecom.net

Lots to update

So, a lot has gone on since my last blog. Monday we took Autumn to her first appointment at Scottish Rite. They have a spina bifida clinic there and all the care is free. YEA! Anyways, they took a very detailed of our family history--even wanted to know about our siblings, nieces, and nephews. They also adviced us to tell ALL of our family members to take their vitamins and for the women to take folic acid since that is one cause of spina bifida so here is your warning. :) So, then a nurse came in to talk to us about all of Autumn's issues and our concerns. They did mention that the reason she may be needing more oxygen is because her shunt may be malfunctioning and we have also noticed a new soft spot on the back of her head so that could be from extra fluid on her ventricles. So, we have an appointment with Children's to get her a CT scan on Friday to see how everything looks. Let's pray everything is fine so that we will not have to have a shunt revision surgery because that will put on coming home even later. We also have another appointment at Scottish Rite on Tuesday to meet with a urologist to check her bladder and see about getting her on a bowel program that will regulate her to only have a bowel movement 1-3 times a day so that she will not keep having rashes from her acidic bowels (we are fighting another rash again). This is a typical issue with spina bifida patients. So, we will be following up with Scottish Rite for all of her spina bifida issues, Children's with neurology issues, and Baylor's Children's House for vent clinics. So, we will be in Dallas quite often so that is why we are still thinking about moving there. We'll see though. By the way, I am frustrated with Children's because they called to verify insurance info but have NONE of Autumn's information in their system other than she is a boy. Hmmmm......they have no record showing we were there for 11 weeks?--so we will have to get all of that figured out on Friday when we go to our appointment.

So, I called and talked to our nursing company today. They have all but 1 part time nurse hired and they were going to interview one today. So, she said we will have 5-6 nurses coming in and one will be our primary nurse during the day to help with dr. appointments and ordering supplies, etc. I went by to meet the lady in charge today but she was at lunch so I will try to catch her Thursday before I have to leave Midland on Friday. She was telling me how she had prayed about taking on Autumn's case and that she knew they did not have the staff but trusted God to provide and the next day she said applications came in. So, we definitely see God's hands completely in control of it all. We will start with 24 hours for 2 weeks then go to 20 hours for 2 weeks and then 16 hours after that--I will then be able to see if I want to stick with the 16 hours or go down to 12 but that is a ways away to think about now. I also talked to the DME company and they have gotten the list of supplies needed and will be ordering them and getting us our equipment soon.

James had a meeting today with our care team at Baylor and we have 2 dismissal dates. Our first goal is to leave Baylor on the 15th but they are not sure if they can get everything ready by then and if not then our next date is the 20th which is 2 weeks from today. This also may change depending on the CT scan results so keep praying. They are also trying to get us to leave from Baylor to go straight to a nursing home to get on the CCP program for Medicaid and then straight to home from there. We are not sure yet if we will be using a nursing home in Dallas or Midland and how long we will actually have to stay there. Once the CCP kicks in then Autumn will be covered for life. Autumn will also get connected with ECI to do her physical, occupational, and speech therapy at home once we get her here. Until we leave the hospital we may also try to get Autumn on just 6 bottles a day so that she will not have to wake to be fed in the middle of the night. Not too big of a deal since I will have nurses to feed her anyways but if one does not show that would be a plus. HA! We are also going to see about trying a new thing where you hook a bag to her G-button and it vents the air out of her tummy while she bottle feeds so we will not have to give her gas medicine anymore. Once we get use to one thing though we are changing and learning a new thing. :) I guess we need to get use to that.

So, I have TONS to get done until I leave again on Friday and I hope this will be my last trip home without Autumn. Keep those prayers coming because I can see that light shining much brighter at the end of the tunnel.

Oh, I forgot to mention that I took time today to go visit my cat at the animal shelter. She looks great. They shaved her hair so she has a lion cut (she had some mats). She remembered me and I cried and cried when I saw her and loved on her. I can see though she is happy and being taken care of. I wanted so bad to take her home but I know I can't but it was so sweet to be able to see her again and see she is in great hands. I still have not heard an update on my bullmastiff but my pomeranian went to James' grandmother and is being spoiled.

Happy Birthday Madison!

Tomorrow is Madison's 10th birthday. I still can't believe she is 10 already--where did the time go? We had a blast at the Great Wolf Lodge celebrating her birthday. I will post pictures this week after I get home and have time to download them. It was so much fun and I was so happy to actually get to play in the water without dealing with any babies. :) I am sure it will be a long time before I get to relax and just have fun like that again. We played at the waterpark and also took the girls to the Scoops Kid Spa where they all got manicures and ice cream. The room and lodge was so neat--it is a place where you can have your whole vacation without ever having to leave the hotel. It would be great vacation to go on with Autumn.

Autumn is still doing great. She has her first initial doctor appointments at Scottish Rite Hospital tomorrow. After the appointment I will be heading home to get ALL the Christmas toys unpacked and hopefully Autumn will be coming home the next week or two. I hope we find out on Tuesday at our next care conference what her dismissal date with be. Autumn has been in the hospital for 104 days now--I can't believe it has been that long! The weeks really fly by but as you all know I want to be home so badly. We are doing everything on our own at the hospital so it is so frustrating to know we could be home doing it instead of there. Well, I better go get the car packed for our trip tomorrow. Hope to have great news on Tuesday about when we get to come home.

Happy New Year's

Last night we celebrated New Year's with my brother, sister-in-law, my niece, nephew, my cousins daughter, and our 2 kids. We just hung around the house and then had our countdown with our sparkling grape juice and then straight to bed after the new year. I am not a big new year person. :) Today was just another day at the hospital and then home to relax. Madison went with me today to help bath, feed, and take care of Autumn so it was nice to have company until James came for our shift change. There is nothing new going on with Autumn. She is just hanging out ready to go home. Tomorrow will be a fun day since we are going to celebrate Madison's 10th birthday. I have rented a room at the Great Wolf Lodge to take her and 3 friends for waterpark fun and to get manicures at their children's spa. They are going to have a blast! I have to wear a swimsuit though so I am REALLY dreading that. I've been too stressed to try to lose the baby fat and I'm waiting until I get home and on a schedule before trying to even attempt to lose it. So, I will be posting Saturday on how it all goes. :)