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.