Earth day festival

Well sweetness today was your first earth day festival. Now normally a day like today my favorite day to celebrate we would have all got to the festival and had a spectacular day for free. However today was not so spectacular for you or your sister Isabella. This earth day was unusually eight billion degrees. WOW. We did everything to cool you and baby Bella down but there was no escaping the heat. Insane. You cried and Isabella couldn't get comfortable or drink enough water. Finally though we got cool and hour into being there and things were better. You didn't get much of any sort of nap so right now at 11:21 pm you are fast asleep or totally conked out for that matter. You finally stopped fussing and crying after and cool bath and half a bottle fell asleep at 8pm and have been asleep the whole time. Your sisters too are totally just out like a light. I think you all are going to sleep the whole night through :D.

So now let me tell you what we saw there today. First thing as soon as we get there sure enough there is always someone smoking with a baby in their arms or pregnant. This time the lady had a baby type carrier on with the baby facing out with her poor like head fell all the way forward looking like it was cutting off circulation and breathing all the while smoking a cigarette. Other mothers and I were livid. Then we see other smokers and more smokers. Riddle me this why do they allow smokers at an EARTH DAY FESTIVAL. Just sayin. Then we saw a person pass out from lack of water and food, poor guy. The wind came up and we saw a booths canopy fly off their area into the people walking around thank goodness for everyone acting quickly I don't think anyone was injured just startled, it was so random. I felt bad for the people that worked the booth it was so unexpected. Your dad all day was so grumpy and irritable because he wore jeans and a thick T-shirt, I told him he was going to be entirely too hot because it's always somewhat warm on at this festival (this one being insanely hot). He was miserable. Although he was grumpy he could have been worse. Then on our way home tonight we watched a lightening storm happen from Reno to Dayton. It was beautiful. I wish we would have been home to witness it instead of driving I could have tried to get pictures of it and show the girls. When we got home we rushed all three of you girls in because you all were sleeping so we didn't want to wake you but we didn't. Lorelei was put on the couch and is still there totally out, Bella was put at the foot of our bed and still there totally out, you I left in your car seat because you were snoring you were sleeping so good so I wasn't about to disturb you till it was necessary. Then as your father and I were unloading our many bags because I always pack for several days it seems: 1 rolling duffle bag, 1 stroller, 1 diaper bag, 2 giant Costco bags, a camera bag, and a baby carrier, anyway so I'm noticing my house is a total wreck and I could have sworn it was clean before I left but I guess I was totally wrong. Omg it's trashed Lolol I'm not cleaning tomorrow lololol.

Ok that was your day it was good and bad :) I love you girls :D

Pointless

Nevada is pointless!! Baby I'm so sorry we live here God I'm so sorry. Your ambulance ride to Sacramento is not covered so that's another four thousand dollar bill we can't pay. Nevada Medicaid is pointless and has not covered anything so far. We will have to stop paying our mortgage soon just to save money to move to a state where they don't garnish your wages. We have ran out of options there is no company willing to help us in the thousands of thousands of dollars in bills that have added up since your birth. I guess all this is my punishment for being greedy and wanting three kids. Life sucks and I'm sorry I dragged you in it.

It's been a while

Hello sweetness it's been two weeks since I have written, sorry. I just did not want to write anything else depressing so I waited till I could give you good news. Easter was fun we took you and your sisters to the park and hid eggs and played on the jungle gym it was a very warm day which is not like all the past Easters in fact last year it rained. The 11th we took you to renown hospital they put you under anesthesia again and drained the fluid in your ears and put tubes in and did another hearing test. So the doc said there was a lot more fluid than she expected which explains your hands constantly grabbing and pulling your hair and ears you have been in pain for months. The hearing test did show that your hearing is much more damaged than she originally thought it would be. However you being deaf is the least of my worries. Since your tubes you have been laughing and moving your arms all around it was a great thing these tubes. I was very skeptical to take you back to renown since they had proven to be unintelligent in the past but dr Garrett the ear doctor and dr curry the anesthesiologist were fantastic. They eased my anxiety before they put you under and they completely listened to my rambles as why I was so scared.
I went on two news stations for you and one newspaper I am hoping to get help. The local pizza factory did a fundraiser night and gave us $140 so that was really cool and we have received a few other cash donations so right now we have exactly $1200 in your bank account just $33,800 more to go we will get there. I am learning to be patient. I have come to the conclusion I can't change anything and I can't rush anything so let's just say screw it! Those medical bills will get paid when they get paid and if they don't like our minuscule payments then oh well it's not like we are trying not to pay. None of this would of happened if were not sent to renown in November 2011 for them to accomplish nothing it was a pointless stay and I am soo mad that I even went. They did nothing literally we stayed in a room for a week for nothing they just gave us a can of formula and left us alone except to come in every morning to take your vitals and weight. Pointless personally I feel they should not charge us. But whatever. At least when we came back last week for tubes the care was exceptional this time.
I did decide to just go vegan for you that way I don't have any dairy touching me or the counters. I don't want to risk you getting sick again. And really I have only been eating meat for a couple years and it was starting to gross me out again so going vegan was pretty easy :) this weekend is going to be your first earth day festival I can't wait it's my favorite celebration. Your sisters love it every year they get to do all sorts of arts and crafts. The weather is going to be impeccable too I can't wait.
I am trying to get some 100% cotton white fabric and clothing to tye dye to sale the stuff for you and frame some full moon photos I took too. I was thinking of attending the online photography school to get a degree in a couple years. So that is still in the thought process. I'd like to put a recipe book together too but I never measure anything so I have no idea how much to say to put in. So starting this week I am going to start measuring things lol. I hope I can do all of this for you so we can enjoy life not worry about how the bills will be paid or if food will be provided.
A few weeks ago pastor Garry asked people to stand if they saw or felt the miracles of Jesus in their lives. I honestly could not really say yes or no before you. So when he asked this I couldn't stand up fast enough. If people don't believe there is a creator and we pray for nothing I have proof there is. You have changed my life in so many ways. You are an inspiration of good and faith. I am proud and honored to be your mother.
Ok well I love you and your moon sisters no matter how crazy your sisters make lol. I am going to go and find our pots and soil and get it ready so we can start gardening and growing our own fruits and veggies and herbs to also save money and of course it will teach your sisters some science.
I hope you have a great day Annabeth Moon Moser

Ugh

So today we went to your pediatric check up. Started off great your weight matched your birthday. You weighed in at 11.11 pounds and your birthday is 11-11-11 so that was just way cool. You smiled and giggled for Dr. Ehmann which was totally awesome. You were an amazing 24 inches and a head circumference of 16inches and your hemoglobin was perfect. Your oxygen was just a little low so they are gonna send over an oxygen monitor for another sleep study. Now for the bad we have noticed a hunch on your back and it seems to have been getting more pronounced so we asked and doc is gonna put in for X-ray's to be done it seems you may have scoliosis or kyphosis or something not sure yet but it's definitely something. "deep sigh" I believe I'm becoming numb. I'm trying baby moon I'm trying I just feel like a huge failure as a mother and I'm sorry. One day I hope that I just have to worry about you and your sisters not medical bills or medical insurance or whether or not to buy food or pay a bill. I worried about finances before but never like this I didn't have to choose just sometimes late. This sucks!!!!

Jealousy

Is it normal to be angry and jealous of others with their new healthy perfect babies, not having to deal with life or death situations and doctors or having to deal with medical bills you can't pay or having to deal with your phone ringing all day with mean people and bad news. If its not well then I guess it's too bad because I am. It's not fair having a baby should not be this hard or this expensive. I love you Annabeth but I just don't know what to do anymore I have ran into every brick wall and nothing I do is helping I am afraid we are going to lose everything and be living on the streets. I wish you could tell me what to do. I wish you could drink formula that could be bought at a store I wish you didn't need special doctors. In tired of crying every single day I'm tired of bring angry and I'm tired of my country not helping me when I did my time I served my country I earned my right to be here. This all sucks and I can't seem to do anything right. I even thought ok well I'll make things and sale them well that's near impossible it's outrageous to purchase business licenses and what not here, it's much easier in Oregon. I do love you and I hope you know I have tried everything under the sun to get help and nothing had helped. I'm trying to give you a wonderful life I truly am. Please forgive me if I continue to fail. I love you and I'll keep trying I'm just so tired.

Depression part 2

So apparently depression doesn't get better the next day. It's a stupid word that's for sure. Today is my third day of not getting a shower. I should have taken our friend Kim's offer and let her come over so I got to shower but i just figured i would have able to take one by this evening I was wrong. I stink just so you know that. I got a dumb bill today I called they said I have seven days or we go to collections, no payments can be maid no discounts nothing. Yay us in this state they garnish your wages put Liens against your home and anything else you are buying or own, lovely right. It's so funny everyone always says call early interventions they will help you with your bills um no they do no such thing. Or medicaid always back pays um no they dont or every baby gets disability through social security no they dont, or what about your governor ya what about him he does nothing. There is not one program in this state we qualify for. I can't even begin to explain the stress I am under. You however are doing great today. You have a pile of happiness. Your smile oh your smile I can't begin to express the overwhelming sensation that takes over when I see you smile at me. Oh I love you and your sisters and I really hope we don't have to live in the street or in our truck or heck get our vehicle taken. I'm scared very scared. I'm not sure how much more I can take. I don't want to leave you or your sisters you are my reason for breathing but what good am I obviously I screw everything up because this is all so screwed up right now. We have been kicked to the curb and we don't matter to any one in the world. Hell we can't even get your dads parents to help with anything not a fundraiser not yard sale not a bill nothing. If my parents had the money believe me they would not hesitate to help in anyway they could craft fairs raffles bake sales anything. Now our town in which we don't know very many people have have got our local pizza place to help on a day where part of their sales they give back amazing these people don't even know me I can't wait to meet them and thank them. Well my sweet baby moon I'm going to close my eyes for a few hours so I can get up between 3 and 5 to shower and get ready for a news reporter to come hear our story. Maybe we can get some donations we got three so far. I love you my sweetness you are so perfect you are my hero.

Depression

Well it's been one of those days where depression gets the better of you Annabeth. I'm alone I do everything alone I don't have help and it's very hard to take care of all three of you, do housework, keep everyone fed all day, talk on the phone to dr offices bill collectors etc etc, manage the finances, entertain all of you, and so on. I'm sure no one would guess it but I'm severely depressed and I don't know how to fix it heck I had to even look it up to make sure that was it. I'm a crying stressed out mess. Oh but you, you and your sisters are perfect oh so perfect I could not ask for better children even when you guys are at each others throat you are still polite and still wonderfully talented and smart. I just wish things were easier it's all so hard I wish I had someone to help me everyday but well we are not filthy rich so we can't hire a secretary or a nanny or a maid Lolol. I'm extremely tired you keep me going all day and all night I honestly get at the very most on a good night two hours of sleep. I'll be ok I still won't give up I'll just adapt somehow.

Now today also I thought wow you do have a tooth coming in in the front but I may have been mistaken when I further examined your mouth I say a ton of white bumps almost like teeth at the top of your gum line where it touches your lip. So asked our amazing Facebook family what they thought and we got lots of feedback which is awesome and much needed. So when I spoke to your pediatrician I could give her a better description. Your doctor said it looks like bronhs nodules . Awesome they go away on there own I'm excited yay. You have also had super bad gas that stinks all day. Tomorrow is a new day right let's hope it goes much smoother. We are going to start the day off a little different we are going to wake up and make brownies. Yummmmmy I'm gonna try and sleep now baby moon I love you

Baby fart exercises

So due to an amazing woman at church last night you my sweet Annabeth stopped screaming yay!!! Miss Claire walked up to us after marriage builders and asked to hold you, thank God! As soon as she took you from me she immediately knew something was wrong. She asked if she had a bowel movement today I said only one and she usually has like 4-6 and she has been screaming for two days and I don't know what's wrong, I don't eant to have to go back to the hospital but I think we are going to have to. She said no she has very bad gas bubbles she needs to get out, I just looked her like really um ok. Then she laid you in her lap and starting doing baby fart exercises and had you fartin up a storm. I couldn't believe my ears. Amazing I tell you amazing. When we got home I fed you changed you and immediately fell asleep with such ease. Now this morning we did some more baby fart exercises gave you your meds and a sip and now you have been fartin and burpin all morning it's music to my ears. Now could you poop that would be nice :) I can't wait till next Monday and we go see your pediatrician I can't wait for her too see how big you have got in just a few short weeks. I even tried measuring your length last night and I think you grew two inches I think you are 23 inches now but that was with daddy's roofing tape measure. I also need to talk to her about your ear tube surgery April 11th I'm very skeptical having it done at renown I'd rather drive to Sacramento. You have anesthesia issues and breathing tubes issues and renown isn't one to care about what I have to say. I tried calling to speak with the pediatric anesthesiologist and they wouldn't hear me. They don't know what they are doing with babies like you. I'm a nervous wreck. I'd rather not do it all since you will be under for over an hour this is NOT OK with me at all especially at renown at sutter yes ok fine no problem. If we have to absolutely have it done at renown I'd rather your pediatrician be there in the room while this is all going on. But that's not how hospitals work :/ so we will see what happens. I love you baby moon and I hope you have an awesome day today!

What a day

What a day. Annabeth you wore me out. What was wrong all day? You got up almost an hour earlier, then you wouldn't let me put you down all morning, then I think it was about 11am you starting screaming and crying and you really didn't stop except for when we were in the store and I was walk bouncing you, then kept screaming all the way home and in the house and didn't stop till about 830pm I'm a total wreck, you probably gave yourself a headache and are totally wore out from screaming all day. Finally 930pm you passed out. Please I beg you let's have a better day tomorrow. I'm exhausted! To top it off your sisters were unreal today in both stores whole foods and smiths. They were loud screaming or crying or fighting or running up and down isles! Thank goodness they came home ate and crashed. I feel like I've just ran two marathonsIf you are up. I can't even think so I have to go to bed and please feel better tomorrow. We are thinking you get car sick like your sisters and I do, because you were fussy before we left bit it progressively got worse the longer we were in the truck. Goodnight my moons I love you, best daughters ever xoxoxo.

Waking up

Amazing and hysterical! Annabeth wakes up every two hours on the dot at night for a diaper change and feeding then she gets up at 7am exactly and stays awake for hours and usually fussy. Well this morning was different I heard a child giggling deep down from their gut as I look over at my three moons, since we all sleep together including the hubby and sometimes some cats lol, yes its crowded but we are warm lol. Well anyway Lorelei is looking at me with a quirky smile and I say did you wake up laughing she says no it's Annabeth she is being silly. I look at Annabeth and she busts out with a hard laugh I have never heard before she just looked at me like I was the most hysterical thing in the world. I loved it so amazing. Huge progresses are happening. Its amazing the little things we are so proud of when our children are born different from the average child.

All meds are not the same

Ok so the last few days have been totally crazy. We were on the news for one, can you believe it, I'm totally going to tighten up my diet and exercise routine geez I definitely don't belong on tv lol. Your sisters were beating each other with blow up bats trying to get their face in the canera freaking out on each other over place mats oh my thank goodness for editing lol oh and the dogs lol oh my the dogs lol. Now for the bad news. Sunday your Prevacid was replaced with nexium. Horrible! I thought ok maybe it will just take a few days for your body to adjust but noooo. The only reason Medicaid would not pay for Prevacid is because they feel they are the same even though nexium is $264 and Prevacid only $57 um HUGE difference. Well anyway you have not been able to keep your food down and you have been screaming in pain like you were before you got on the meds. You have been doing crazy exorcist projectile vomit and it's coming out your nose so once again you are stopping breathing because you are puking out your mouth and nose your eyes roll back in your head and then when there is no more puke you dry heave for about five minutes. Today I called your pediatrician and told her nurse what was going on and she got us some Prevacid for how long I have no idea but as soon as I gave it to you, you smiled like thank you mom. I'm not really into man made drugs or formula for that matter but this has saved your life and you need very specific saving. We don't have time to experiment on what will work and your doctor in California knew he knew exactly what would help with no trial and error like other doctors and hospitals. I am hoping you start feeling better because I really don't want to go back to the hospital. I'm scared and stressed out not too mention beyond depressed. Please don't decline even more in your health I need you. You are wrapped in a towel in the picture because you kept puking and pooping all over your clothes as soon as I dressed you you would either vomit all over everything or poop through everything with horrible diarrhea. I'm still covered in puke I don't get to shower much being your mommy and I'm a clean freak with myself and my house but all that has been put aside for now. I love you baby moon you make my heart skip a beat.

Giving up

I've decided today that we won't be contacting another organization or business or people in general for help. You should have heard what one lady had to say to me over the phone. I don't even understand how people can even think what they say is ok they are hurtful and are causing me to be hurtful and I'm not normally hurtful. I'm just so angry. But you know what we have each other right that is all that truly matters. We make a good moon clan all four of us girls and well daddy poor guy he is always surrounded by us women. So we will just revert back into ourselves and not really communicate with outsiders and outside the home. Im over the horrible phone calls and if my phone ever rings again it will be too soon. I kinda want to just unplug it. Know this baby moon you are amazing to me you are rare to me you are extra special to me and of course your sisters and daddy. I see you with Lorelei and you two have a special bond at four months old you already have a favorite it's magical how you look at Lorelei. I'm so looking forward to being on this journey of T9M with you even the world isn't and nor are they even interested unlearning or even knowing what in the world is T9M. I love you baby butt and all your baby lovins

All Alone

UHHHHHGGGGG! I actually feel more angry than that. So you know I am on the phone monday thru friday dealing with people to get help. They all know you have this rare disease that you are the only child in the whole state of nevada that has it and no more or even less than one hundred people in the entire world have it. So I made one last attempt and called the county office and told them this and asked if they couldnt offer financial assistance if they could help with doing a feed or bbq or something for a fundraiser to help with your bills and your one thousand dollar a month special diet bill. They said no we dont do things like that. I dont have the money to supply a ton of food or things to auction off to make money or this would have been done months ago. It really upsets me that I served my country and the one time I need help they turned their back on me.

Do you know how alone and abondoned I feel. I feel just as alone as when I was raped when I was 17, 20, and 22. I feel just as alone as I stood there being held at gun point by the enemy trying to take me from my station as they rattled off every piece of personal information about me and my family socials addresses employment etc etc. You would think being the only child and the only child that was unwanted I would be used to be tossed to the side like garbage but you are a baby they should be helping you an innocent baby who did not ask for this.

I am sorry

I am sorry Annabeth please I beg you dont leave me!

MRI Reading

Well today sucked! Its wasnt exactly the response I was going for from the doctor. Today we found out that your brain is severely underdeveloped its incredibly small and your cerebrum or however you spell it is even smaller. Your brain and more water than brain and is pretty much just a mess. Clinically you will probably be severly mentally challenged. I LOVE YOU! Dont you ever forget that I love you know matter what and your daddy and I will take care of you for the rest of your life with great joy. I am so sorry so so sorry I feel like I have robbed you of a normal life because of my greediness to want more children. I come from a very small family and I know what its like to grow up the only child and alone with no real best friend and no real relationship with my parents and I just wanted to have a big family to love and be close to. I am so so sorry Annabeth I promise you though you can have and do anything you want I will not deny you anything. Whatever I can do to make up for my greediness I will do. I am so so sorry. I love you so much you make me smile just looking at you, you make my heart feel like the sun shining. You have changed my life and I love you for that. You are an amazing litte girl.You sisters and I will make sure you are the happiest little girl in the world.

Now your sister Lorelei today spiked a fever of 102.6 and cant stop coughing so we had to put her in a cool bath and get her to eat she has not really ate in days. So we got her to eat pizza of all things lol and we got some childrens nyquil we have tried everything and nothing has worked so nyquil is our last resort and if she doesnt break her fever by morning we are taking her to the doctor. She is asleep right now so thats good sleep and water and food is good for her right now.

We are still waiting for medicaid to authorize your formula who knows I feel like the world is against us right now. We need to get out of debt so we can have extra income. I am so over the evil against us I just want the lord to say hey enough leave them alone they have nothing to deserve these trials of anguish and suffering. WE ARE GOOD PEOPLE!!!!  We dont lie cheat steal drink smoke do drugs we help others we are good people just your average family. We dont deserve all of this. You Miss Annabeth dont deserve all of this. I am sorry please forgive me.

Things might be looking up

So things look like they are trying to get better. Easter Seals/Early interventions was just here and they said medicaid will cover doctor visits in California if you dont have the right doctors here. So that in itself is a blessing now to get Medicaid to cover your food and find a way to get your daddy back to work without losing our healthcare. It looks like getting coverage in California wouldnt happen right away and will be a long process just like Nevada so either way we are just totally in a tough spot and more stress. So who knows I mean its good because I love my home and I love the desert. So whatever may be will be I just need you to be covered. They weighed you today and you weigh a whopping 10.1 pounds woo hoo you are just growing like a weed yay baby yay. I think your antibiotics are working really well too because your cough is not so bad anymore so that is good too. We have to get you some cool toys to reach for and try and hit and touch. So we can get you to really use your senses and reach some milestones. So lets just keep praying that you get the help you need for the rest of your life and that we dont lose our home because we really like our home and we really love our friends here. We just need to do whats best for you and we will do whatever it takes to keep you alive and get the help you need. They just make it so hard to get help its not like I am asking for money hell I will even pay them or volunteer time or something to get you healthcare because to actually purchase healthcare from a health insurance company I found the cheapest is 758 dollars a month who in the hell can afford that NO ONE! I am not asking for much baby I am just asking to be able to keep our home and to keep health insurance and to get you food and doctors and for your daddy be able to go back to work. So please God please just help us I cant stay on the phone one more day with people giving us lost hopes and bad news. I just want to enjoy our small window of baby years with you before you are yelling at me just liek your sisters telling me I am unfair and I am mean, although that does make me laugh hysterically when your sisters tell me this but I dont let them know that lolol. I love you baby and I am so greatful to be entrusted with your life and to be your mommy you ahve taught me so much in just the four months you have been alive and I cant thank you enough for making me a better mother and making us a better family you are our glue well and our faith of course because if it wasnt for God none of this would be possible. I love you baby Moon

4 months old

Miss Annabeth Moon today you are four months old AMAZING!!!! So much has happened since my last blog where do I begin. Ok so we are still trying to find a way out of our mortgage and find a home in south lake Tahoe that is not a dump, who would have thought there would be icky gross homes up there but there are and its all do to drunkin college kids destroying property. We are still trying to get medicaid to cover your formula but they want a local gastro doctor to write the prescription but Reno only has one and he has sent a letter saying he refuses to see or treat you even if you came into the hospital for emergencies he will not see you. He spoke to your daddy and quote " looks like your daughter has something pretty life threatening so you may want to get that taken care of" unquote. So not only is Nevada not helping they dont have any doctors here to treat you and medicaid will only cover California visits for emergencies. You need a gastro doctor, eye doctor, kidney doctor, brain doctor, and ear doctor and Nevada only offers one an ear doctor. You have just recently been diagnosed with a bronchial infection but are on antibotics and it seems to be helping. Since you have been on prevacid you stopped vomiting and stopped vomiting blood and with your new formula you have gained one and a half pounds you are thriving. You now laugh and stay awake just to hang out you actually reach to grab my necklace and touch my face. You are turning into a healthy baby all because of the right doctors that cared enough to run the right tests not just guess and assume. You have actually unkincked your body and are stretched out you toes are finally not overlapping and your hands are not in tight fists anymore. I knew something was wrong and I knoew you were in pain this whole time I just knew it but now you are better well not all the way but getting better everyday. You love your baby bjorn so now on warm days we walk to the park with girls and enjoy the sunlight and warmth. Tuesday we go see the brain doctor he is from California and is only here once a month so Tuesday we will find out if you are going to need brain surgery anytime soon. I can tell you one thing I am emotionally, mentally, and physically drained and tired. I feel like you should already be ten years old with all the fighting I have been doing I am literally on the phone monday thru friday all day everyday talking to people trying to get you medical coverage trying to get you food and meds but its not easy here not easy at all. I spoke with your pediatrician and California wouldnt even second guess your coverage we have doctors records and medical proof you need what you need for your disablilty and we could be enjoying life right now not stressing out and fighting and crying. I honestly dont know what to do anymore. I have exhausted all our options and I am one hundred percent terrified. Your sisters are feeling the stressors too they are constantly at each others throat and being very defiant and moody because I am neglecting them and having to deal with legal issues allday everyday. It should not be this hard to have children and love them and take care of them but life is very hard right now the hardest I have ever been through. Especially when I dont like to speak to strangers see strangers or even go to places I have never been I am not big on public places. I have serious panic attacks and lately I have had nore than I can count on my fingers and toes and I am afraid its going to afect my heart and have a heart attack, then what.... I love you baby sooo much I love my big family I have created but there has to be an easier way.

Life on the line

Oh Annabeth! I am so sorry you have to go through any of this. I just read the doctors report and during your endoscopy you almost died several times under anesthesia, and during your MRI they had several complications with your breathing tube. They have put so many iv's in you your body hurts. My heart aches for you. You are the strongest most patient baby in the world. Since we have brought you home life has been hell. In the hospital they have you on prevacid and Elecare formula, its a non dairy non soy formula and the prevacid is supposed to get the puss out of your tummy. So since I still give you as much breastmilk as possible which isnt much I have to be dairy free too. Now getting you the formula has been the hardest thing ever. You are going to run out of food sunday. Walgreens is trying to get medicaid to cover it.Your local gastro doctor will not write a prescription and he mis diagnosed you and told us you vomiting blood was completely normal and to just add rice cereal to your bottle. He is very anygry that we went to Sutter hospital and had an endoscopy that he didnt request and the very well known pediatric gastrologist at Sutter was very upset that you had not been to the hospital sooner and that you have the worst case of gastritis he has ever seen in anyone let alone a baby. Currently your daddy is unable to go back to his very good job because we need medicaid and wic to cover your doctor appts and formula. However now you are not going to get the proper medical attention you need in Nevada because Nevada has a monopoly on pediatric specialists. So we are looking into foreclosing on our home or short saleing or something so we can move to south lake so you can get the proper medical insurance for your disablity that Nevada will not recognize. California will help you live and thrive and give all sorts of services that you need. So pray baby that we can somehow get out of our homeloan do to medical reasons and then we can move so you can live and get the proper medical attention since Nevada is not doing it. I need you and I love you. Ever since you have been on this formula and medication you are thriving you dont puke and you have gained over a pound already. We did notice that when we were in California you did not have any breathing problems and as soon as we got back home in Nevada you had breathing problems again. So that is another issue we have here too its like you are allergic to sand or something lol I dont know but your amazing pediatrician will check you out on wednesday. Please stay with us please be patient with me and your daddy we will get you to a home that you can live happily in. We just have to be smart about it, your Auntie Michelle is going to hopefully find some fine print in our mortgage paperwork that we can get out of here. Just hold on sweet baby girl and keep fighting. I love you my love my sweet baby butt my cuddle muffin my giant shinning full moon just hold on tight and mama will get you help.

MRI

Hey annabeth I am have a nervous breakdown out here on the floor in the waiting room just so you know. I was going to take a shower to kill time but I just can't and that coming from me is totally weird just so you know because I'm a shower freak I don't like to be icky. So this morning at 0655 you pulled out your iv you didn't bleed they don't know why you should have been bleeding they are concerned. We walked down to the MRI floor they took you from me screaming they said I could wait till you were asleep and give you kisses but they didn't let me. They said they had to put a breathing tube down your throat and give you oxygen and put in another iv then put you under the anesthesia. But you were in anesthesia for a really long time the board says 0737-0852 it should not have taken that long in anesthesia I'm freaking out that something happened. I can't get a hold of your dad either. Please be ok in there baby girl your sisters daddy and I need you. I can't stop crying my heart is pounding and I want to scream and yell. I love you baby Moon!!!!

Anesthesiologist

Ok so it's been a few days sorry but we seem to stay pretty busy in hospital. So so far you had some blood work, ultra sound on your organs, a cat scan, and an endoscopy. They had to put you to sleep and now I will have that vision in my head for the rest of my life. One minute you were squirming and moving and as they slowly added the medicine to your iv your body stopped moving and your eyes stayed open looking straight ahead as if you were dead I freaked out and started bawling. They sent me out of the room. I paced the hallway and it seemed like hours but it was probably only fifteen twenty minutes. The doctor came and told me your belly is completely filled with puss and that you have gastritis. They quickly prescribed prevacide and a super hypoallergenic formula. You seemed to do better but then today you seem not all there in the head. So I'm not sure what's going on. In the morning at 7 they are coming to get you and take you downstairs and putting you asleep again to do an MRI that procedure will be about an hour long. The cat scan revealed your ventricles were in fact extremely enlarged with a ton of fluid on the brain. So tomorrow we will find out if you need brain surgery. I am totally freaking out and I just want to take you home all better already. Lorelei is lost without us home. Lorelei I love you so much you know you are mommys best friend. I will be home soon with baby sister I promise. I miss you so much and I miss isabella. I can't wait to come home and I know annabeth wants to sleep on her own pillow. We want to sleep in our bed all five of us. I am gonna get to bed we have a long day ahead of us. I love you Lorelei Moon Isabella Moon and Annabeth Moon you are my lifeline.

Ambulance ride

So I missed yesterday's blog because we were at Barton hospital all night. So here is what happened yesterday. 11am was your pediatric appointment and right before we got there you puke a ton of milk and bright red blood. Dr ehmann said she wasn't ok with that so she was going to try and get a hold of the upper gi doctor and the gastronomic doctor and she would call me later with a plan. So after we left there we went to Costco and got food and you and your sisters those dresser things with baskets for drawers. Then we went to get your dads eye surgery. After his surgery we went to Reno we needed formula and other stuff but about 530 dr ehmann called and said we needed to go back to Tahoe and go to Barton er and get checked out then be sent to sutter or uc Davis hospital. So we rushed and got what we needed drove home and packed. All the while I'm crying and your sisters and daddy. Ms.chris and mr Jim came and got us at home at 8pm and drove us to Barton they stayed there with us. The nurses took almost two hours to find a vein to hook you up to iv's I was bawling and in hysterics. They wouldn't let me feed you. You were screaming and there was nothing I could do. You cried for hours your daddy was at home panicking. Then the time came at 3am they put us in an ambulance and drove us to sutter memorial hospital in Sacramento California. Now we are here. I finally got to feed you I should be sleeping but I can't I'm in a unfamiliar place really far away from home. I'm scared and want to go home. I miss your daddy and your sisters. We have to share a room with strangers I don't do well with strangers. So now we wait till a doctor gets here and starts doing tests more stuff not fun. I wish your daddy was here, but ms Chris and Jim are downstairs they will be up soon :) I love you Annabeth and pray the doctor finds the problem quickly and fixes it quickly and sends us home quickly. I want to go home and I know you do to!!!!

Good Day

Well today we didnt have to go anywhere it was amazing :D.  Lorelei you were not so nice to Isabella today. You kicked her in her back pushed her down and even took her toys from her. STOP IT! Your sister loves you and wants to be just like you so please be nice to her. Annabeth you did fantastic all night with no vomiting and just one spell this afternoon with just a speck of blood. That speech therapist at Barton in Tahoe really knows her stuff I did all of her suggestions and she is really helping. I am glad she felt that the crazy lady from Easter seals wanting to put in a feeding tube was wrong well at least just grasping at straws when she had not had any tests done or tried anything new. That Easter seals lady too did not even want me to see the speech therapist in Tahoe she said she doesnt deal with Barton and they dont know anything about children and are not qualified to treat you. Well that was all a bunch of bull. The speech lady (Susanne) even called me today to check on you what an amazing doctor. I love Barton hospital I wish we lived in Tahoe so we could be close to all of the doctors that truly care and not treat you like and experiment. So anyway today was fabulous you girls. Thank you for helping with the chores and thank you Lorelei for always being my friend and my amazing daughter you always help me when I need it most. Tomorrow we go see the pediatrician in Tahoe for Isabella's  year check up and shots and Annabeths check up then your dad gets eye surgery. Its going to be a long day so I will make sure to pack you lots of snacks and crayons and paper. I love you Moon babies I love you so much everyday you make me love being a mommy more and more. Hopefully I can buy a nice camera soon so we can go and shoot the Moon and that will be our girl thing we do just as mother and daughters together photographing the Moon with each other. Maybe even one day we can put a book together of the Moon girls photographing the Moon :D I love you babies goodnight

Hope

So we went to Tahoe at 7am this morning for your swallow study and your upper GI test. Your xrays looked good no crazy deformations in your throat or stomach. I was pretty excited. No aspiration into your lungs either which is super rare for children with your disease. So I was even more excited. You were a true solider during all of the tests and not being able to eat for like 6 hours. You did so well I was so proud of you I wish I could be more like you. The speech therapist who did your swallow test said whatever doctor suggested a feeding tube was really rushing the gun without any proof other then vomiting. So we have a game plan of how to feed you and when to feed you and just monitor it and see if you start packing on the pounds. I do have to say that you have not even vomited once today just by listening to her suggestions. All in all it was a pretty good day for you. I do wonder now why you have a chronic cough I hope its not like pnemonia or anything. Thursday we go see your pediatrician so we will collaberate and see what she says. I love that you have the most amazing pediatrician in the world I would not trust my children with any other doctor. She always does her research before making a descion and realizes all children are different especially you Annabeth :D Tomorrow you and I are jsut hang out with your sisters and do some baking and floding mounds of laundry its almost a dream that we actually do not have to leave the house lol. Have I told you how much I love you and how much you have proven every doctor wrong. You are a rare Trisomy case and proving all the logical answers fro Trisomy 9 inaccurate that they really do not know anything about it. I am sure God has his hand in there somewhere :D he and I have had some serious yelling matches :D I hope he doesnt reprimand me for it lol. Today was a day of true hope and made me smile and take a moment and laugh today which isnt something I have done in a long time. You make our family perfect Annabeth, your sisters adore you. Thank you for letting me be your mother I truely am blessed. Hugs and kisses to my Moon babies, Love mommy

Another doctors opinion

Wow I don't know how much more I can take. Today we saw yet another doctor. This one wants to put in a feeding tube! So now we have three doctors that want to put you asleep and you are only three months old. One to do a cat scan, one to put tubes in your years, and now a feeding tube. I'm not ok with any of this! On our way home from the appt today I had to drive erratically and speed fifty miles an hour through a residential just to find a place to pull over because you quit breathing because you were vomiting profusely and with much blood. It went on for about five minutes. I literally peeled out and slid into an office buildings parking lot blocking the entire road. Tomorrow we leave at 645am to go to south lake for your swallow study and upper GI test. I'm tired I'm so tired. I have to take you to appts everyday literally every day, clean, cook, laundry, pay bills, find money to pay bills, take care of your sisters, all the animals, stay up all night because either you or your sisters are up crying through the night, all the while holding you because you need me so much and that's ok that you need me I love that you need me, I'm just tired and stressed out. I love you Annabeth I love your sisters and I love being a mommy. I just want it to get easier. Goodnight my Moon babies I'm going to try and get about an hour of sleep before I get up at 5am xoxoxo

I love you

Oh Annabeth what a horrible day today has been you have been so unhappy and you puked a lot with blood. I'm frightened. Please don't leave me. Your sisters your father and I need you! Friday my good friend Ana Beth whom I named you after lost her baby at 20 weeks pregnant and my new friend in Carson lost her baby Friday too she was 5 months old. I'm sad I'm heart broken and I'm terrified. I love you baby so much. You and your sisters are my everything. Please fight please stay please!!!

lazy day

Hi girls today was pretty uneventful. Just a day of Annabeth being fussy and not letting anyone put her down she vomited a little blood not much and you two wow could you girls be nice to each other geez. Lorelei you are always just so mean to your sister quit bossing her around. I love you girls with all my heart I love being your mommy. goodnight my Moons