Cami hospitalized again

Cami has been hospitalized again since last Thursday night. (actually Friday morning) Thankfully we had a night nurse that night. We knew she was coming down with something because her lungs were not clear. We were trying to wait until my day nurse came on at 8am so that I had her to help with the kids. About 4am I hear the nurse screaming. Camryn's room is at the other end of the house. When I got to her room, she was purple (literally) she was satting at 70. I called 911, Kevin grabbed her oxygen, we started her on o2, kevin went to the top of the property to wait for ems, so that they would not pass our house. Ems got there along with 2 Police officers. We were bagging her when they got there, they couldn't stabilize her. I jumped in the ambulance with her and we were off. She was being bagged all the way. Once we got to Dell ER they had about 30 people waiting for her. There was not enough room for me to be next to her. So, I had to stand by the doors. She was admitted to PICU once she stabilized. They changed her trach to be sure she didn't have a blockage, they don't know what happened. They believe it is a neurological issue. Basically her brain just didn't tell the body to breathe. She is a lot better now, but of course we are still freaked out. She turned 1 year on August 18th. She rolls around the house, she gets physical therapy 2 times a week and is about to start occupational & speech therapy. Will try to update more later.

Hello

I want to thank all of you for all of your support & love. Our life is crazy right now, but it is a good crazy. Cami is flourishing at home. The trach makes it to where you cannot hear her cry of make any noise. I have been praying that she would be able to make noise and guess what??? She coos around her trach- I can actually hear her!! It is truly an answered prayer. I have called her ENT Dr to schedule another procedure to stretch her windpipe so that eventually we can hopefully get the trach out of her. I am waiting now to get the day & time. I will let you all know when it is. As soon as I can learn to upload the video's of her "talking" to me I will put it here for all of you to see. I haven't meant to be a stranger, but we don't have internet at home and my phone doesn't show everything. So, I see today that you all were asking me questions. I did not get them when they were sent. So, I apologize for not getting back to you, I just do not have a way to unless I go to my mom's. I can text though- so I have been able to respond to text mssg's. We are just having a hard time financially right now with everything that has gone on. I had a stroke when Cody was 3 months old. So, I quit working to be a stay at home mom. Like most people we rely on one income. Kevin makes too much for any help financially. I found out that the cloth roll that Camryn needed was a 3 month supply. That is why it was so much. When Cami was released from the hospital I was given 3 company names that I could order her supplies from. Most are covered my medicaid (thank you Jesus) But, as I am finding out- not all is covered. We will get her first SSI check on June 1st. It will be $250.00 a month. That will definitely help with the things that are not covered by medicaid. All in all Cami is doing great though! Her lazy eye is getting a bit stronger as well. We put a patch on her good eye for 2 hours a day. She definitely has bad vision in her lazy eye. When she is wearing her eye patch, she reaches for toys or hands or whatever is there but her depth perception is off. She usually misses the toy. However when she first came home and had the eye patch on she couldn't see anything. she didn't even reach for it. So, now that she is actually able to see something in that eye- she is getting better daily. Cami is such a happy, laid back baby. When we first got her home she didn't want to be touched. She was happy laying in her crib or bouncer or whatever, However once you picked her up she would start crying and not stop until you put her back down. She likes to be held now though :O) Between family and her nurses she gets held quite a bit. Her neck is getting stronger as well! We have been working with her and her physical therapist and it is paying off. (her phys therapist has only had 1 session with her so far) She can turn on both of her sides and has turned completely over by herself 1 time!! She has 2 top teeth coming in, but they are coming in very slowly. Anyway, I have to go Cami is at the house with the nurse and I have to get back there. Cody had an appt this morning so we left to go to Austin. I try not to take Cami to the Doctor's office because I don't want her sick again. Will take more pictures with my phone and send them to my Aunt (Brenda Upton Crowder) and ask her to post them so that you can see her) She weighs about 16 pounds now and is a chunky little girl. I apologize for asking for financial help. You have all helped so much. Someone wanted my mailing address. My address is PO Box 212, Dale, Tx 78616. I read where someone was a little angry with me for asking for help. I hated to do it, but didn't know what else to do. My mom & stepdad are having a hard time financially due to him being laid off. So, they now depend on one income. If they had the money they would help but they do not. Well, have to go. I will read my mssg's when I can come back and use the internet at my mom's. My phone number (if you want to text) is 512-216-0752. I am trying to get it back on now. I haven't had the money to pay the bill. However, it will still receive text mssg's for now) Will update when I can. I did take the number for supplies to get it cheaper, I ordered 2 rolls so that will do 2 months worth. Thank you all again for everything.

Easter & More

We had a wonderful Easter this year. It was great to have my kids together and out of the hospital! My 2 nephews, my niece, Cody & Cami were all together for Easter and it was fun for all. Cody even hunted Easter eggs. My mom & step dad bought Easter baskets for the kids and stuffed them full of candy & toys for them. Cami got little rattles, wrist rattles & feet rattles. She loves them all. Once I find my cord for my camera I will be able to upload pictures. I do not know where the cord is currently. I hope all of you had a wonderful Easter this year. Thank you for your continued support of our family. It means so very much to us. Gas is killing us (like it is every one else) we have to drive an hour to go to any of Cami's appointments. An hour there and an hour back and her Houston appointment is a 9 hour round trip. Gas is killing us... I try to make her appointments all on the same day as often as I can so that it will save on gas, but that is not always possible. I pray that gas prices go down at least a dollar a gallon soon. Camryn got approved for medicaid now- so that is helping tremendously. The only problem is that medicaid won't pay for some of her medical supplies. They want her to use certain supplies, but she has a reaction to 2 of them so we have to use 2 other different supplies that do not cause a reaction. The Doctor has contacted medicaid and advised them that Cami has to have these certain supplies due to a reaction to the others, but so far they haven't authorized them. One box of cloth w/ silver in it to help keep her neck dry cost $328.00 for a month's supply. They want us to use nystatin powder, but the powder causes a horrible rash on her skin so we cannot use it. The other thing that they don't want to pay for is just a plastic tubing that goes on her oxygen machine. That piece is just about $10.00 and we can use it for a while- so that one isn't one that we really worry about- the cloth is the killer. Anyway, thank you all for your support- we appreciate it very much. Thank you for all of your prayers for our sweet baby girl as well. Will update again when I can. Will try to find the usb cord for my camera so that I can upload pictures as well.

Sweet Cami Updates

Sorry I haven't updated in a while, I know many of you were concerned and I apologize. Camryn was in the hospital for 5 days when we took her back after she was out. After that 5 days we came home and she has been doing wonderful ever since. Unfortunately Cami has a weak immune system and therefore she will come down with something easily. Her Doctors say that over time her immunities will build and she will get sick easy forever (thankfully) Since she has spent about 90% of her lifetime in the hospital she has been in a "sterile" environment and once she came home she wasn't in that environment any longer. When I took her to the Pedi 3 days after coming home, she got sick that day and it was awful. Anyway, that is the past now.... Camryn is growing wonderfully and continues to amaze us daily. We have 3 nurses that come to the house different days & hours to help care for her. It takes 2 people to do her trach care and to bathe her (due to the trach & her fighting you) She has to be suctioned often to clear the mucus out of her trach. She is on the pulse ox machine all the time to monitor her oxygen level and her heart rate. It has to be on her feet in different areas and has to be moved every 12 hours so that the sensor will not burn her skin. The only good place to put it on her, is her feet. We have tried to her hands and toes, but they didn't work out very well. We have to carry 3 machines with us every where we go, so going anywhere is a lot of fun *lol* We have to have her pulse ox machine to monitor her oxygen & heart rate. We have to take her suction machine to suction her trach so that she can breathe easily. We have to take her feeding bag, machine, lines & formula to feed her with her g-tube. We also have to carry oxygen with us every where. I have one oxygen machine in the van that stays there all the time and 2 in her room in the house. Her Pedi is ordering me a portable oxygen machine that will be easier to get around. Cami really loves being at home. She has so many toys and tons of attention from Momma, Daddy, her big brother Cody, 3 nurses and other family members. She loves to play with her hands and feet and will smile very big when her big brother shakes a rattle for her. She can roll on her side by herself and has turned from her back to her belly one time so far. She does not like being on her tummy at all. When she has physical therapy we have to put her on her tummy for a while to try and help her neck muscles become stronger. She gets herself very worked up and sets her pulse ox machine off because her heart rate jumps really high. Her eye sight is very good in one eye, but the other is not very good yet. We put an eye patch on her good eye for 2 hours a day to try and help her strengthen her other eye. I don't know how well it is working but we hope eventually that she will regain sight in her other eye. Her hearing is great though! She loves to listen to music and loves to grab her toys, hands, feet & the mobile in her crib. When she is in her bouncer and laying on one of the little jungle gym things that are on the floor with toys hanging above, she will grab the toys and smile. She makes my heart melt daily :O) Sorry to be rambling, but trying to get so much in one post. Cody is still jealous of her sister and I guess that will continue for a while. He doesn't care about anyone else playing with Sissy, but he doesn't like his Momma playing with Sissy. He is okay for sharing for a couple of minutes, but any more than that and he is trying to push me away from her or, if I am holding her he will try to get in my lap to be in between us. We are working on it but I think it will just take time. I try to explain to him that Sissy needs Mommy's attention and that she is sick bur he is too young to understand. He will be 2 years old on June 26th. Time seems to be flying with my little man *sigh* He hurt himself really bad last night. He was opening the back door and calling our dog J.J. in like he always does, however usually J.J. doesn't come unless I call him. So, I was putting laundry in the washer and Cody was calling J.J. in, well for the first time every J.J. came in with Cody calling him and I wasn't holding the door with Cody. Cody can only hold the door open a tiny bit with her little arm and J.J. is a big dog- so, J.J. came in and it knocked the door out of Cody's hand and Cody fell onto the steps and then off the steps to the ground. It happened in a split second, I couldn't get to him fast enough (even though I was just about 3 feet away) So, he has scratches all over his little face and neck from falling into a bush. He had dirt in his mouth and he has a small cut on his eye lid. I cleaned him up and Cami's nurse was there and she helped me and said that she thought he was okay, but of course she wasn't a Doctor. So, we went to sleep and then this morning he woke up with his eye swollen shut and black & blue. So, I took him to the Doctor and they looked him over and checked for fractures, knots, bumps, etc. Thankfully he didn't have any. Then they put dye in his eye and used a black light to see if he had a scratch or puncture in his eye and he did not (Thank God) So, my little man looks like he has been in an accident. However, he is acting like nothing is wrong at all. Got up this morning and said "hi Pigs" to his guinea pigs, went to Cami's room and said "hi Sissy" then started calling J.J. in the house (I had already put him out) So, he is still his happy little self. Camryn got approved for medicaid (finally) however, medicaid doesn't pay for a lot of her trach care supplies. She has this white cloth that has silver in it that has to go between her skin and her trach ties to keep her little neck dry. Well, medicaid will not cover it. It is like $300 something a box and a box only lasts about a month. She has to have it because the nystatin powder causes a rash reaction. Unfortunately it cost about $85.00 to fill my van up and we go through a tank and a quarter every week taking Cami back and forth to the Doctor and therapy and stuff. (occupational therapy starts coming to the house next week) So, I am going through about $115.00- $135.00 a week in fuel. I hope gas prices start to go down soon because it is killing us. I am so broke that my step dad had to pay the co-pay for Cody's Doctor appt today. I hope you enjoy the pictures- they were taken today. I will try to update again soon. We have to pay a couple hundred dollars to get our internet back on. So, once we have the money we will turn it back on and I can update daily and post a lot of pictures. I know that there was an auction to benefit Cami, so we should get the money soon and that will definitely help our little family. I hope there is enough to get the internet turned on. However, the most important is to get Cami's medical supplies stocked up. Thank you all for your continued support of our family. I can't tell you how much it means to all of us.

Love you all,

Christy, Kevin, Cody & Cami

Short Post

Sorry I haven't updated in so long. I spent quite a few days with Cami at the hospital getting ready to take her home. We left to go home with her this past Tuesday evening. Every thing was going great and we were all so happy to be a family again. Well, I took her to her Pediatrician on Friday because that was a condition of them letting her out- she had to see her pedi by the end of the week. So, Friday I took her in and she was all smiles and doing wonderful. She received her overdue vaccines and about 30 minutes after we left all heck broke loose. She started running a fever, coughing non stop, had a ton of mucus building up. It was awful. I gave her Tylenol and that helped with her fever, but little else. Saturday night I took her to the ER, because she had labored breathing and it was terrifying. As soon as I walked into the ER, the nurse at the desk called to the back and told them to come and get Cami immediately- (they didn't even have her name at this point) Then, they gave her an antibiotic that she had an allergic reaction to- her entire was a deep purplish/ red color. They gave her benadryl to help with that. Anyway, she was hospitalized again. She has been at the hospital since Saturday night and continues to be there. They believe that she has got a virus and then getting vaccinated on top of it was too much for her little body to take. So, we are back in the hospital unfortunately. I have to run. I will try to post more later today or tomorrow.
Please continue to keep Camryn in your prayers.

Love to you all- Kevin, Christy, Cody & Cami

Sorry So Long Without A Post

Cami is doing okay. We still hope to bring her home at the end of the month. We have an all day training on Thursday for trach cpr and more equipment training. it is going to be hard for sure. Cami is great though and I am happy about that. Cody has a double ear infection and allergies and a virus, so I am getting no sleep lately since he is up all hours of the night. His Pedi put him on amoxicillian and my Dr put me on it as well since I am getting the same thing. I just hope that Cami doesn't get it. I wear a mask when I am around her and the nurses think that is safe- I am not sure about that. This weekend Kevin and I have to take turns and do a 24 hour shift taking care of Camryn by ourself. Without any nurses help at all. It is going to be hard to say the least but I hope we can do it. If we fail, we can't take her home until we pass it. Anyway, I want to thank all of you for your continued support for our family. You have really saved us in so many ways. I worry about her ongoing medical bills though. I worry about them all the time. I am so very happy that people are doing auctions to help us with the ongoing medical expenses. Thank you all for your continued support. You are truly a blessing to us. I hope you enjoy the pictures that were taken in the last few days.

To Clarify

No one has accused us of not being real. It was just brought up to me that a lot of the mom's really didn't know if they should continue trusting every story. Honestly, no you should not trust every story. Some people are out there to scam you. Is it sick? Yes, it is. However, it is done. If the person cannot produce many pictures of their child- they most likely are not telling the truth. Anyone, (especially with a sick child) will take tons of photo's because you never know what may happen. I have over 2,000 pictures of Cami and about as many (if not more) of Cody. I have had losses in the past. I KNOW that every day is not a guarantee. If a child is hospitalized, you will definitely see hospital equipment in at least some of the pictures. If all of their pictures are shown in the same outfit- another red flag.

So, definitely do not fall into a trap knowingly. However, don't exclude yourself either. Before you send money be SURE that the story is true.

Are We Real???

Unfortunately there was someone who *allegedly* used sickness & death of a baby to gain sympathy, friendship and maybe financial gain. So, now the people who were taken in by this person are asking about all the rest of us who have legitimate problems. Are we for "real"?? Well, anyone who really needs to know if we are for "real" can call the RMH in Austin 512-472-9844. Our names are Kevin & Christy Faglie- we are currently in Rm 26. Unfortunately, we have been here since shortly after Cami's birth and got a "leave" of a few weeks and have been back since 12/6/10 except for a 1 week leave. I would not ever make up a child's health issue and even in my wildest dreams could not have made up half the stuff that has happened to my poor daughter since her birth almost 7 months ago. If you are my facebook friend, you can find my family and contact them as well. Any of them. I would hate to think that you would think of us as "liars", but I understand since you trusted someone else who turned out to be.

Enough of that. Cami is doing great today, we had a "care conference" with 2 of her Doctors, 2 of her nurses and 2 social workers on a plan to get Cami home. We are aiming to have her home by the end of the month. We have trach cpr and more equipment training next Thursday (not tomorrow) then we have to care for her by ourselves for 24 hours each and pass that before she can go home. So, keep us in your thoughts & prayers.

Pictures From Today

Cody was in the middle of saying "Hi Sissy" He sounds so cute when he says it.

He is so gentle with his Sissy

Have I mentioned how much I love this kid???

My Beautiful Baby Girl. Half of my reason for living. The other half pictured above :)

Unfortunately, Cody and Cami have never had a lot of time together. So, as they both age it is important to me that they be "close" I want Cody to love his little sister through thick and thin. I want her to adore her older brother as well. It is hard to see one child have to work so hard for everything, but I know that she is mine for a reason and I will do what I have to do to care for her. Today after surgery, she slept a long time. My mom came and got Cody this afternoon because I have a Dentist appointment in the morning. I am blessed beyond words that my mom and step dad have been able to care for Cody as much as they have. He is enjoying the visit with his cousin, as my mom and step dad have his cousin there as well. Thank you all for your continued support and prayers. When I feel like giving up, I think about everyone who has been keeping us afloat with prayers and finances for so long now. I wish that I could visit with each and every one of you. Maybe one day I will. We are hoping to have Cami home by the end of the month. I will go into specifics in another post. We have paid for our part of all of her equipment. ($2068.00) Our monthly out of pocket cost will be anywhere from $384.00 - $567.00. They are not sure of the specifics quite yet because the number depends greatly on just how much special formula she is taking in and how much oxygen, etc she goes through. They say we should know the "average" by the time she is home about 3 months. I am hoping that SSI comes through for us soon, because I do not see how in the heck we are going to pay all of this out of pocket. Camryn was born with 3 birth defects, premature (born at 31 wks), now has a trach and a gtube and requires oxygen a lot of the time. So, I believe she should qualify with all of the above. Anyway, it is almost 2am and I am exhausted- so I hope you all enjoy the pictures.

Back At RMH

Well, we checked back in at the Ronald McDonald House today. We got the room that we stayed in when Sissy was born and in the NICU. I much prefer this room to our last room. So, change is a good thing. Sissy is doing great- she is set to go to surgery in the morning. I was told to be there at 7am, but they still do not know what time her surgery time is as of yet. They are going to stretch her windpipe, look on the inside of her tummy with a camera and remove her broviac (sp?) tube that was surgically placed in her chest a few surgeries ago. I have paid for all of her equipment now (Thanks to all of you) and now just have to worry about her month to month costs. I took her g-tube care, cleaning and everything else course today. It is pretty straight forward- so no worries there. Here are pictures from the last few days. I hope you enjoy. Will write again later- have to get Cody fed and go and visit Cami again.

Camryn's Auction

Please be sure to visit Cami's auction page at http://www.facebook.com/pages/Offical-CAMI-PAGE/158650890856920

All proceeds are going to help with Cami's ongoing medical bills. Feel free to post the link on your own blog page or facebook account. We truly appreciate it.

With any luck Cami may be out of the hospital by the end of the month!! If we can get all of her supplies and training finished she will be home where she belongs!!!

Keep my sweet girl in your prayers- prayers are what is keeping us going.

Camryn's Auction & Surgery

Camryn's auction is now live. All the proceeds go towards Cami's medical expenses. Please visit the auction and bid. Items are still being accepted to auction as well. The link is http://www.facebook.com/#!/pages/Offical-CAMI-PAGE/158650890856920Camryn is going back into surgery next Tuesday. The surgery is to enlarge her windpipe opening. She has had 2 of these surgeries already. This will be #3. The hope is that eventually we will be able to remove the trach and Cami will be able to breathe without the trach. I meet with the g-tube training lady on Monday so that I can learn how to feed her using the g-tube. I have already learned how to clean the area , but now have to learn everything else. Once we are done with all of the training for everything we hope to be able to bring her home. We have to learn trach care (which has to be done 2 times a day) trach changing (has to be done 1 time a week) g-tube care (daily), trach cpr and the what to do if??? There is a ton of stuff that we have to learn. We are both done with "trach care" training. We are still learning trach change. We are done with g-tube cleaning, but still have to learn everything else about it. Kevin has changed her trach 3 times and I have changed it 2 times. It takes 2-3 people to do trach care and trach change. You cannot do it on your own. (especially with Sissy, she is a strong little girl) We are supposed to learn trach cpr this coming week, that is a 2-3 course process. They want to be sure that we know what we are doing and I appreciate it very much. Our monthly cost for all of her supplies is around $300.00. That is if the insurance will cover her formula. If they will not (we do not know yet) it will go up quite a bit more. We are hoping that wic will cover it because she did qualify for wic. Her insurance is paying several thousand dollars a month for the equipment, nursing care, oxygen, etc. So, $300.00 is not bad- it is much preferable to thousands of dollars (we could not afford that at all) I met with the home health company yesterday and we went over our preferences for her care. I get a nurse 12 hours a day- I can choose night or day or a combo of both for example 5pm-5am. That way I have "day" help and "night" help. I told them that at this point I am not sure when I will need them so we will play it by ear. I learned about all of her equipment that we will have to take home with us as well and I admit it was a bit over whelming. I am not sure what our part of the equipment rental will be a month. At this point we desperately need her to be on SSI so that it will help cover our monthly expenses for her equipment and supplies. We desperately want her home, but I am getting a little nervous because of all the care that she requires. Most of our house has wood flooring, but the bedrooms have carpet. The Doctor said that it is preferable not to have carpet because carpet can hold a lot of dust, hair, etc even with daily vaccuuming. So, we are working on trying to get wood flooring in Cami's room. Laminate wood flooring is not that expensive and Kevin can put it in. Lumber liquidators has the cheapest at .79 cents a foot. It isn't as nice as the rest of the house, but it will work and be better for Cami. I am using my niece's computer and cannot upload pictures because I do not have my usb cord. Her computer isn't one that you can just put your memory card in. So, I will see if the Ronald Mcdonald house will allow me to use their internet for a bit and I can upload more pictures. Cami is smiling a lot more these days- she is just too cute for words. I love her so much and I am so happy to be her mom. I feel blessed daily that God gave her to me and not anyone else. I am thankful to all of you who have gathered around us and prayed for her. Please share her auction link with anyone you know. I would appreciate it very much. With the recent gas price increase- it is killing us to drive back and forth every day to see Sissy. I am hoping that we can stay at the RMH again starting Monday if they have an available room. That way it will not cost us $50 a day to go see her. Well, will go for now

Hello All

Hello, it has been a couple of days since I Have been online. I want to say "Thank You" to all of you for your prayers and the donations!!! I have paid one medical supply company $736.00 and they delivered 6 boxes so far. I have to pay another what I owe them and they will send more supplies. I want to thank all of you for all that you have done for our family. We would not be able to do it without you all.

There is an auction that is going on to benefit Cami. The link is http://www.facebook.com/#!/pages/Offical-CAMI-PAGE/158650890856920


Please help support Camryn by donating to the auction or bidding in it- Thank you!!!

I have received numerous emails about Medicaid & SSI for my daughter. Before Camryn left the NICU, the hospital applied for SSI benefits for Cami due to her special needs. We had one interview in November and have not heard from them since. When I did contact them, I was told that they are still in the middle of the process. So, it is not an overnight thing. Regarding Medicaid- even when your child has special needs- they take your income into consideration- therefore- Cami is not eligible. So, though I know you are trying to be helpful by bringing up SSI & Medicaid- believe me, we have tried that avenue.

Camryn's Doctors believe that she should have certain equipment that the insurance does not think is a "necessity". Therefore, we are in the process of trying to get her insurance to cover more, but in the meantime, we are responsible and do not want to let Cami continue to sit in the hospital any longer than she has to. Sorry to cut this short, but it is my "class" time again with Cami so I have to go. My camera is still packed, so no new pictures yet, but will try to get that unpacked tonight. I paid the deposit on our home phone- so I am hoping that it will be on shortly. They have to put in some new lines where they were cut before, so I don't know how long it will be.

Thank you all so much for everything. We love all of you

Christy, Kevin, Cody & Camryn

Heading Out

We are packed and heading out. Both of our vehicles are stuffed to the gills with all of our stuff, but we are making it. I am going to use donated money to get our home phone turned back on. I will call them tomorrow and see when they can have it on for us. I will try to get Internet back as well. My main focus though is on the phone because the hospital can not contact us on our cell phones because we do not get a signal at home. Also, once Cami does come home that is our lifeline for her. We are still learning trach cleaning & changing and now g-tube cleaning and care as well. Once all the training is done with we should be able to take Cami home. We are going home today to start cleaning and dusting the house as it has sat empty since December 6th when Cami went into the hospital. So, though no one has been home to "dirty" it, it needs to be aired and freshened up. Also, we now have mice in our house. Kevin put out poison the other day, so I am hoping that they are no longer there. We will be bleaching the house down to clean up after them and running all the dishes through the dishwasher to be sure that everything is clean. We live in the country and unfortunately mice do come in your house if you do not have a cat and we no longer have a cat. (he passed away a while back) I will miss chatting with all of you, but as soon as I can I will have home phone service again and hoping to get internet again as well. Cami is doing great and I hope to upload pictures tonight from today (if I am able to use my mom's internet) It is going to cost us a pretty penny to go to see Cami every day, but we have to do it. I can not let her be neglected as she is when I am not there to advocate for her. So, once our classes/training for her trach & g-tube are done and we are able to pay for her equipment- we will be able to take her home. Yes, I said it.....*HOME* She will have nursing 12 hours a day, plus therapists coming to the house daily to work with her. So, my life will be pretty crazy for a while but in all honesty- it will be a "good" crazy and not a hospital crazy. I am told that I can choose a day nurse or a night nurse for the 12 hours. I guess I will have to wait and see what feels good when the time comes. My son will be happy to be home though! He will be happy to see the dogs and play in our house & yard. My heart is torn in two- as it usually is. Us going home is good for Cody but not for Cami. Us staying at the RMH is good for Cami but bad for Cody. So, it is a tight rope that I walk. If I get excited to go home- I feel ashamed of myself because Cami won't be with us. If I want to stay at the RMH, I feel ashamed because I know it isn't the best place for my son. So, I am just confused by it all. We should be done with all of our *care* classes with Cami in the next couple of weeks, but then it will be time to take her back into surgery to stretch her wind pipe again. So, if all goes okay we may have our baby girl home by April 1st. (if classes are done, CPR training is completed and we pass and we of course pay our portion of the equipment) So, please keep us in your prayers and thank you all for prayers and donations.

Love,
Kevin, Christy, Cody & Camryn

Packing & Heading Home

I spoke with Kevin about staying in a motel/hotel around here versus going home if someone could help pay for it. He would rather we go home and try to get the house ready for Cami to come home. It has pretty much been abandoned since 12/6/10. I read the comment about people willing to help with a hotel stay. If you could instead put it in the chip in on my blog or mail it to me that would help. I coud use some of the money to get our home phone turned on and other to visit Cami daily and the medical expenses to bring her home. If mailing, you will have to mail to our po box because we are leaving the RMH today.

My address is
Christy Faglie
PO Box 212
Dale, Tx 78616

My cell number is 512-216-0752

I have to go now. We have to pack. I will check internet again before we leave here.

Pictures & Goodbye

Kevin and I spent quite a few hours with our sweet girl today. We did her trach care and with tears rolling down our faces told her that we may not be able to come and see her every day for a while. We explained that gas is $3.40 a gallon and that with a 100 plus mile round trip, that it would be very expensive to come and see her every day. I told her that I would be sure that I at least come every other day for sure. I told her that she will always be on Mommy's mind. She just looked at me and gave me a crooked little grin. She melts my heart. I called around today and found a cheap motel for $49.99 a night plus taxes. However, it looks like it charges by the hour if you know what I mean. That is the least expensive one that I found. There are weekly rentals as well and they are nicer and are about $250.00 a week. I guess we are just going to go home and try to come see her daily or as often as we can. It is going to kill me to be away from her. There just isn't anywhere that I can stay with my husband and Cody that is really close to the hospital. A friend from high school offered to let me & Cody stay with her for a few days, but Kevin doesn't like that idea- he wants all of us together. Kellie (my friend) doesn't live very far from the hospital. Kevin is stressed out and is taking it out on me. He acts like us having to leave is my fault or something. I can't stay at my dad's because he and my sister and brother in law all live in my dad's house and they all chain smoke. I cannot stand the smell of smoke and will not allow Cody around it. My brother and sister in law have a very large 2 story home, but they think that Cody is too spoiled and I am not going to let anyone yell at my child for being a child. My mom & step dad live out near where I live so that does not help either. So, I guess we are moving back home tomorrow and will try to come and see Cami every chance I can afford the gas. We also do not have internet access at home right now and will not until we pay our balance in full. The crappy thing about that in August when I had Camryn and she was in the nicu I called the internet provider and told them to turn the internet off because we would not be living there again until our daughter went home. Well, they never turned it off until I accidently hit "internet explorer" on the screen when looking for the time and it came up. So, I called them and they told me that I never called and still owed them $680.00 They did at that time turn it off, but will not credit the unused 4 months. Anyway, the good thing about going home is that I am at home! I can visit my pets, which is a definite plus!
So, here is a list of good vs bad

*Going Home*
*Positive*
1. Sleep in our own bed
2. Cody will have both his room which is full of toys and the playroom we well.
3. Cody will be able to play outside (yard is fenced & I have dogs- won't have to worry about him being kidnapped.
4. I won't have to bleach Cody's tub everyday like I do here:) At RMH, I have to bleach it top to bottom when we first move in, but still have to bleach the tub at rmh daily because Kevin and I shower there as well and don't want him to have funky adult germs.
5. Last but most certainly not the least..... I get to spend time with my dogs!!
*Negative*
1. Will miss Camryn terribly
2. Gas will kill us financially
3. Will add so many miles to my car that Something is bound to go wrong.
4. Will have to go grocery shopping and since I am broke I am not quite sure how tht will
4. No land line, so in an emergency I am in trouble
5.

*RON**ald McDon**d House*
*Positive*
1. I can visit Cami often
2. I can take Cody to the park right down the road and he likes to visit some of the displays at the hospital. They truly amaze him.
3. All the stores are so close to us here. I can walk to so many diffent store chains like Toys R Us, Old Navy, Target and lots of other stores.
4. Cody loves the elevator and get the biggest thrill riding in one.
5. Our electric bill is lower than ever now, lol.
6. We get lunch and dinner at the RMH every day of the week (it is included in $10 a day that a family is charged to stay here. (unless you have medicaid then medicaid pays for the family to stay at RMH

*Negative*
1. Cannot have food or drinks in the rooms (kids can have juice or milk in their bottle or sippy cups that don't leak
2. Have to do down to the first floor to refill Cody's cup
3. Have to keep refrigerated items in the fridge. You are supposed to write your name and room number on everything that you bought & brought with you. Well, I have spent a total of about 5 months here at the RMH and I have had MANY things taken. Example- brand new box of lucky charms, 1 pound of brisket from a bbq joint in Lockhart ( Lockhart has fantastic bbq) soda, beanie weanie cans, toaster strudels, vienna sausges and now for the absolute worst... Cody's Juice. Cody is only allowed soy milk, juice & unsweetened tea (or very lightly sweetened) So, since I go with the "no added sugar" in the juice- that makes it more expensive. The soy milk is like $2.60 for a half gallon. One day all of his juice was gone and most of his soy milk. (yes it did all have our name on it)
4. People will fill up all the washers and/or dryers full of their stuff for hours at a time. What does this mean for me? I have to keep going back every hour to check all of the washers/dryers (whichever I need) and sometimes the same clothes will literally be in there all.day.long.

Sorry so long. Just needed to blow off some steam at this point. I do not want to leave my baby girl, but I have to because I don't have $300 something to stay in a motel for a week. I don't have the $2k to pay our portion of the medical supplies and I definitely do not have the money to go grocery shopping to stock up on supplies. I have some meat in my deep freeze that should still be good but we need canned goods, fruits, vegetables, basically different food items needed to make it. Canned goods are not that expensive, so I should be able to wing that for now. But, when Sissy comes home I have to buy more formula which is going to kill us again. It is crazy that it took us 7 years to have Cody and then got pregnant with Cami less than a year later. I am so very blessed by my children, friends & family. Sorry for running at the mouth, I am just tired & frustrated.

I just noticed my donations on my blog!! THANK YOU TO THOSE WHO DONATED TO MY NEW CHIP IN!!! It is going to be used to purchase her medical supplies and if any is left over I am going to try and get my land line put back in.

My day just brightened. THANK YOU SO MUCH FRIENDS!!

Moving.....

Cody loves to wash his hands.

Close up of Cami with her NG tube in

Kevin, Me & Our Sweet Little Girl

left Tara, right Jax

Closest to camera is Ace, then Jax then Tara

We have been at the Ronald McDonald House since 12/7/10. When you stay at a RMH, you get to stay for 60 days, then you have to check out for at least a week and then if your child is still in the hospital you can come back with a hospital referral. Well, we have been lucky because since there were always rooms available, they let us stay past our 60 days. Well, now they are fully booked and have people on a waiting list. Where does that leave us? Well, we have to go home and then try to come back in a week. The problem with this? Well there are a few.
#1- Gas is at an all time high. I drive an suv and we live over an hour from the hospital. So, I can't afford to drive back and forth every day.
#2- Phone issues. Our cell phones do not work at home. So, if there is an emergency- the hospital cannot get in contact with us. I have to pay the phone company $118.00 (that is a deposit, I paid the amount that we owed them a long time ago) to get our home phone turned back on.
#3- Cody. Cody will have to ride back and forth with me every time I go to see his sister and that is a lot of time being strapped in a car seat. He doesn't watch tv- so putting a movie on will nothing for him.

I am in tears with frustration. The least expensive place to stay in Austin is about $50 a night and that is for a dump. So, we are stuck between a rock and a hard place with no where to go. It will cost about $45 a day in gas plus the approx 3 hours that it takes to make the round trip. That is hard on Cody. He is 20 months old- just a little big boy who likes to move around. It is going to be a complete nightmare to drive back and forth with him. I am darned if I do and darned if I don't. I feel like I am hanging on the side of a cliff and one by one my fingers are losing grip. I don't know what to do. I have to see Cami every day because we do trach care 2 times a day and a complete change 2-3 times a week while in training. (once she comes home trach change will only be 1 time a week but trach care will still be 2 times a day) So, now I have to come up with almost $2k to get all of her equipment. Plus $40 plus a day to go back and forth to see her. That is unless we stay in a hotel, but that is entirely too expensive. *sigh* Sometimes I just feel like giving up.

Regarding the comments about putting Camryn on SSI. The hospital applied for SSI back in November for her. We still do not have a decision yet. Apparently, it can take up to a year or longer to get a child on SSI. The hospital she was born in is the one who applied for it- I didn't even know that they did until we were checking her out of the NICU and learned at that point. We had an appointment in November but I haven't heard from them. When I called them on Thursday I was told that it is still in the "review" process.

Regarding "state" insurance. The hospital Cami was born in applied for that for her. We were turned down due to Kevin's income.

The good news in all of this is that we have a $5k a year max out of pocket. So, even though insurance has paid over a million dollars for my sweet little froggy girl, we are only responsible for $5k in 2010 and $5k in 2011. Except of course we still have to come up with around $2k for the equipment to bring Sissy home.

A while back I got the kids 3 guinea pigs. Cody is so cute. As soon as he wakes up he runs to the Guinea Pig cage and excitedly waves at them saying "hi, picks, hi picks" (he is saying hi PIGS) It is entirely to cute, he makes my heart happy. We watch a show called "S*ons of An*archy" which Kevin loves. So, we named the Guinea Pigs "Jax" (male) "Tara" (female) from that show and then the other is named "Ace" (male) I am getting my males neutered so that I don't have a guinea pig farm though. I had guinea pigs when I was growing up, I also had pet rats. I was thinking about getting the kids a couple of pet rats, but I was scared that the kids would pull his/her tail. I have taught Cody to be gentle to his "picks" He very lightly, using 2 fingers pets them and says "entle momma, entle" (he means "gentle momma, gentle" because that is what I tell him. He is such a loving compassionate little man. I feel so blessed to have him and Cami in my world. I didn't set out to get the guinea pigs when I did- I eventually wanted a couple when the kids were older, but when I went to the store one day there was a lady in front of the store giving them away because her son left for college and left his gp's with her and the female had 2 babies. She just had Tara left and the people walking in the store behind me had about 8 kids and they were trying to get Tara- so I grabbed her up so that she didn't end up hurt/dead at the hands of 8 kids. Well gp's are social creatures and so I had to get Tara a friend. The person I got Jax from told me he was a female- imagine my surprise when I found out that he was a male. (when I actually looked) So, I was happy with Tara and Jax, but then I was going into Pet*co to get gp food, chews and hay and there was a lady outside giving away Ace. Said her son was allergic to him. So, that is how I came to be the mom of 3 gp's. Tara & Ace look a lot alike except that Tara has wavy hair where as Ace has straight hair.

Please keep us in your prayers. I truly need them now.

Thanks & Much Love

Pictures from Tonight

Here are some pictures from tonight. Cody loves corn on the cob and made a grand adventure out of it. My niece looks so much like I did as a child. She is 5 now. Time flies.... I hope you enjoy the pictures.

Money, Money

Spoke with the medical supply company this morning about getting all of Camryn's supplies ordered so that once we are done with all of our training with the g-tube and trach we can take her home. So, they are running through 20 million things on their list and I am just sitting there saying (uh huh, yes, okay) Then at the end of the call the girl wants to know how I am going to be paying for all of that today. Excuse me? She then tells me that AFTER the insurance pays that we still have to pay $1928.64 out of pocket. I just start laughing because well people- we don't have $1928.64. So, my life keeps on trucking.

Just Going To Stand There.....

Daddy, Mommy & Cami

Baby Cami (notice no ng tube in her nose anymore due to g-tube)

Mommy & Cami

Daddy & Cami (right before her trach change)

My handsome little man. He is such a mess

Since Cami has had her trach- you cannot hear her when she cries or when she makes any noise at all. I hate it because she cannot express herself. It makes me crazy- it puts me on the attack for my daughter. I am an easy going person.... Well, not really I USED to be an easygoing person. Now I am a nightmare in the form of a mom. I feel the anxiety on the floor go up when I get there. Every nurse there wants to be distanced from me. I am sure that "Camryn's mom" gets brought up a lot in their meetings and shift huddles. I am sure that I am called some pretty nasty things behind my back as well. You know what? I don't care either. People should do their job and I wouldn't have to be crazy. The other day I walked in behind another family (you have go dial in at the door to the unit and give a password to be admitted into the icu/imc wherever your child is) So, needless to say they didn't know I was there. I was able to walk down the hall and into Cami's room without being noticed in the least. I left her room door open the way it was and I sat in the recliner beside her crib (you can't see the person sitting there from the hall) What was I doing? I was testing them. Guess what? They FAILED horribly. I was in that room for over an hour and during that time Cami was crying most of it- her heart rate sped up and guess what? The nurse muted it from the hallway. She didn't even come into the room to see what was wrong. Mind you, Cami cannot make noise- so she sat there in silence. Mommy was there and of course I calmed her down- but no one came into her room. So, once I was able to calm her completely and change her SOAKED diaper and put on her diaper cream (because she has a rash... I wonder why?) I walked into the hallway and waited to be noticed- it didn't take long. I am a nightmare in mom's clothing. I tore that nurse apart, then the charge nurse and then the rounding Doctor. How DARE they ignore my baby girl when she is in distress? So, I have filed a formal complaint. I also told them that I never want that nurse with Camryn again. The charge and Rounding Doctor agreed with me that it was wrong and blah, blah, blah. You know, I.am.so.damn.tired. I don't understand why they find it so hard to give Camryn ANY ATTENTION AT ALL if I am not there to be sure of it. Don't get me wrong- she has good nurses too. It is just that the bad over shadow the good. Last night Kevin and I did a complete trach change and care together without anyone helping us. You know what??? This is the first trach change or trach care that Cami did not cry. I am not lying. As God is my witness, Kevin and I worked along side each other and she never cried. Even the 2 nurses watching us were amazed and said the same thing- that they have never known Cami not to cry and get herself worked up during anything to do with her trach. It was because we were GENTLE, TALKED to her and TOOK OUR TIME. It really isn't hard to take a few minutes is it??? Well enjoy the pictures- will do another post later- I have a meeting with the hospital about my "concerns" that I have to get to.

Cody & Cami at 6 Months

Cami 6 Months

Cody 6 Months

They resemble a bit. Not a lot, but some. I sure do love my little ones :O) (BTW Cami's 2 bottom teeth have broken through) They do have the same nose, coloring and same shaped ears. (nose is my side of the family the *shape* of the ears are mine, but the way Cody's stick out is courtesy of his daddy)

What I Was Going To Say....

Sissy Right Before Surgery

Before They Took Off Her Clothes

My Gorgeous Son Cody

This post was going to be titled "Tired" because that is what I am folks... Tired. Mentally, Physically, Emotionally... just plain darn tired. Then I read a post about ANOTHER baby dying this week. WTH????? Yes, I am up to 4 DECEASED babies this week. Not only that, but it would be horribly unfair to my fellow infertile friends who would eat a shoe to have a child and be "tired" like me. For those who do not know, let me take you back. (Mom- don't read any further because you don't like to talk about it) I was a "fertile" once upon a time. Yep, me... I could get pregnant w/o science. Can you believe it? When I was 19 I got pregnant by my then boyfriend. I got prenatal care- I told all of my family (he didn't) I wore clothes to "hide" my belly because he was scared that his parents would kick him out and we didn't have a home at that time. Anyway, I had a little girl- a little early and she was stillborn. Yep, you read it right... she was dead on arrival. No reason- just "it happens sometimes, just like with SIDS" So, naive Christy gets pregnant again- has a miscarriage and again and has a son at 21 weeks. He is also born dead. Doctor- still gives me no reason.... I find a new OB who sends me to a specialist (I still see the new ob and the specialist office) who determined that I had a blood clotting disorder that was killing my children. So, once I was pregnant again I would have to give myself blood thinner injections and take a baby aspirin and all should be fine. Well, then I couldn't get pregnant again. Then the fertility treatments started and went on and on and on. Then we decided on adoption- got home study completed all was done and then we switched to international because of a horrible experience with a birth mom. Got approved for international. Then gave it one last shot... I got Cody out of the deal. I am LUCKY to have my children. They are EVERYTHING to me. So, if I ever say anything to hurt you, I apologize. I do not mean to. I am just stressed. I am very, very lucky to have my babies to hold.

I try to "block" Charity & Gage from my mind a lot of the time. It hurts to think of them. However, this week it has been hard with all of the losses coming my way. I have to admit I am getting depressed. There are 2 songs that remind me of my kids- The Dance by Garth Brooks and Who You'd Be Today by Kenny Chesney. I love both- but both hurt. I had both of their names and Dob's tattooed on my ankles. That way they are ALWAYS with me. I was young and I had to "know" that they existed in this world. I Love You Charity, I Love You Gage. I will see you again someday. **forgive my hair legs, I do not have time to shave these days** Also, Cathy- if you are reading this- I am sorry that this had to be brought up but it did. You know he didn't tell you about Charity and you know about Gage. (I will also be getting Cody & Cami's names tatted as well, just not sure where yet)

Forgive Yesterday's Post

My mom texted me this morning wanting to know if I was drunk when I wrote yesterday's post. Umm, no I don't drink. So, I went online to see what she was talking about. I started laughing, laughing pretty darn hard actually. I updated my blog from my phone and somehow mixed in text messages from a friend into my blog entry. I still do not know how that happened. However, it did. So, for those of you who are still shaking your heads about "contact sports" and whatever else was on there- it wasn't supposed to be there, lol. Camryn did very well during and after surgery though she was pretty sore and in a lot of pain afterwards. I would appreciate your prayers that she heal quickly and as painlessly as possible. Thank you all for your support. I am going to try to upload "before" surgery pictures now but computer is giving me a hard time- so it they may come later.

Camryn's Surgery

Camryn had surgery at 11:00 am this morning to place a g-tube in so that she could eat and also wrap part of her stomach over her esophagus to help with her reflux issues, We are hoping that this corrects most of her feeding issues and her reflux issues as well. Dr Horwitz is her main surgeon and he believes that her surgery has come through quite well. She had to have some of her stomach "wrap" around her esophagus to prevent her reflux,so we are hoping that that is the end of that. Sissy was sure a trooper through it all as well. She is such a smart, intelligent little girl and I hope that all of these surgeries will not effect this. From what I hear Dr Horowitz is an excellent Physician and that makes me happy that my little one does have him as her surgeon. So, please keep your fingers crossed that things keep going in the right direction for her. God Bless and Amen

Pictures & Updates

Mommy, Cody & Cami

Mommy, Cody & Cami

Cami Chewing On Her Little Hand

Chewing On Her Little Hand Again (Big, Pretty Eyes)

Beautiful Baby Girl

Camryn's 2 bottom teeth are coming in slowly but surely. She has been chewing on her sweet little hands for quite a while. I put my (gloved) hands in her mouth and I could feel her teeth right below the surface- so they should come through any day now. She is still having surgery on Wednesday 2/23, but I still do not have a time yet. They always do this and I do not care for it at all. I wish they could give me a time and date at the same time. However, I guess I have to be glad to get what I do. I got a $100.00 donation towards Camryn's medical care this morning as well. (Melissa- I will be emailing you her address to send a bracelet) Cody is doing well and was able to see his sister yesterday- he acted like he didn't care on bit and just played with her toys and ignored her. He was pretty good at doing that at home as well,lol. He fell asleep on the couch in her room and I got a picture of him that I will post. I then fell asleep in the chair and woke up with my whole body killing me. Won't be doing that again. Cami still has a ton of secretions that she has to have suctioned many times a day and still gets breathing treatments every couple of hours. Will write more later, thank you all so much for everything.