I had basically given up hope that I would ever be able to access my blog here again. Now that I have I need to re-learn everything about it. So that is what I will do then I will post a proper update if anyone is still out there reading here that is. I will still blog even if people do not read it. It is free therapy LOL
October 12, 2015
February 24, 2013
Well since you last tuned in my daughter was preparing for one of her several major surgeries. Since then there have been 3 major surgeries in our house. Kristeena has had 2 surgeries on her jaw. Sadly they were not a success. All that pain and crap she went through appears to have left her no better off. In the beginning it appeared that she had gained growth but unfortunately where bone was thought to be or developing only scar tissue formed. I fear that since then he has lost most of what she gained.
Damien had major surgery jan 15th. He had been diagnosed with metopic synostosis which is a type of craniosynostosis more common in boys than girls. He went from barely rolling over at 11 months to now he can roll, sit up 100% unassisted, crawl and today he pulled himself up into a standing position and immediately climbed into his chair! They had to shave his head for the surgery but its coming back in now. We will be celebrating his first bday on March 3rd! Even though his actual bday is feb 29th! I can't believe he is almost one!
And now allow me to photo boom you!
August 22, 2012
Well we are in Seattle. Tomorrow Nina faces yet another major craniofacial surgery. We are expecting to be in Seattle a minimal of one month this time. Due to the extreme expense we decided to try our hand at some fund raising.
If you have minute can you share, tweet, repost, recommend or what ever you can think of to share our link.
We are trying to raise a little money to help with food and other expenses while we are here.
I will update on her progress tomorrow. Her check in time is 8:30 AM.
She is having jaw distraction again with ankylosis repair. She is expected to be in the OR at least 8 hours. The last surgery she had like this (was actually less involved) took 14 hours.
Please send her good thoughts her way!
On the bright side surgery for Damien has been put on hold. If he improves within three months he may not require surgery for his metopic synostosis. Which is a form of craniosynostosis. So it is for now a wait and see. They typically do not perform the corrective surgery for his condition until the baby reaches 9-12 months of age so we still have time.
July 23, 2012
So I have been thinking about anger a lot. As you can probably assume from my previous post. So here are so recent rambles of this mad woman.
i can say with the utmost honesty that I have spent way to much of my life angry. As a child I was angry that I was the "messed up one" that I had to be the different one. Just about the time that I got over that and decided ok fine I am the way I am I'm over it I got pregnant with my daughter. My entire life I had been fed this line of bull that my mother knew for fact I was a fluke, afterall none of my siblings had "messed up kids" so I tried for nearly 2 yrs to get pregnant and was over the moon when I found out. At about 17wks they found that Nina had my condition. I became angry again, this time at my mother. By the time I told her she had went back on everything she had ever told me and blamed me for not listening to her. I had witnesses. I knew what she had told me she had told my ex the same crap. When I laid eyes on my daughter I fell in love, but I was so angry at god again, What did my beautiful baby do to deserve this. Then I learned that what I have IS heriditary (mostly for girls) and I for a long time hid the fact that I was angry at myself. I hated myself for it. Then she grew into an amazing child despite everything. Fast forward a few years of going back and forth between being pissed at god when Nina had a surgery that failed, or all of a sudden could no longer chew or swallow. I figured ok fine we have this, she has to be "fixed" the least god could do is let it go smoothly. Nope not the God I know or learned about. Fast forward to July 7th, 2011. I learned that the baby that hubby and I longed for was finally going to be here. I prayed for the first time in probably 20 yrs for him to be a boy. He is. At his four month check up we learned that he has craniosynostosis. I found myself angry at God again. Why did he let my lil guy dodge all the things wrong that could have gone wrong just to have this condition and tortilcollis. I am angry at the doctors who dismissed us like we were looking for something to be wrong with him when we had questions as if we had Munchhausen, I am angry at the other doctors who know what I have been through with mine and Nina's condition who act like I should be thankful this is "the worst it got". I am angry that I never got a shot "at normal". So I was asked once if I thought being a sn (special needs) parent has made me angrier and I suppose I think I have been angry but for me I am not sure that it had to do with being mom to a sn kid or if it was from being the sn kid myself or maybe just a combination. All I knows is that in my opinion God's image is pretty screwed up and I could really care less about his plan most days. But what is even worse is that I want to believe I just have nothing to grab onto to make me believe. I am also angry at the people that don't try to understand and would rather snicker and point. If I hear one more time that God doesn't give anyone more than they can handle you just might see me on the news as the next dumbass that blew her gasket!
In bullets so I try not to forget any of the good juicy details lol. It seems like may was years ago. So much has gone on.
- I completed the spring term at school in june with 4 A's and a B-. To which I was thoroughly thrilled.
- I enrolled into summer term and so far so good. Admittedly I took easy classes.
- My daughter passed seventh grade and is now a frigging EIGHTH grader. She did much better this year than years past.
- We enrolled my daughter into online school beginning next year because she will be in and out of the hospital so much next year.
- Nina is scheduled for another round of Mandibular distraction with ankylosis repair of her joints. This is set for Aug 22nd. Two days before summer term ends.
- She will be 14 this year and that is NOT acceptable. However, at her age she has had to make a very difficult choice regarding her dog. (below)
- She is becoming an AMAZING young lady and we try to tell her that at least once a day.
- Rudy will be going to a new home. It is not something we want to do or something we have not tried to find a way around but alas life has thrown us more than one curve ball. It wouldn't be our life if it hadn't. Nina is going to be at a very high risk for infection and with constantly going to Seattle 2 times a week it would be unfair to him (this is after the initial month in the hospital). We are told to expect several months for recovery and therapy. There are more reasons.
- Damien is rapidly approaching 5 months old on the 29th. He weighs in at 19lbs and probably 26 inches! At his four month check up we learned that he has craniosynostosis. In plain english this means that his soft spots have closed to soon and he requires major surgery on his skull to repair it so his brain can develop normally. Untreated can cause seizures etc. Unrelated to the condition Nina and I have. He was also a week later diagnosed with congenital torticollis. Which is plain english means that he doesn't hold his head straight (he tends to lean). This can be corrected HOPEFULLY with physical therapy that he is starting twice a week on Thursday. His surgery is going to occur about 1-2 weeks after Nina's at the same hospital. We are trying to get them done while we are already in Seattle for Nina so that as bad as this sounds we don't have to start this all over again just about the time we get home again. Also I only get one month off from school so it would be best if it could be done in one trip.
- Hubby has officially enrolled for fall quarter. He was enrolled for summer but his fin aid did not come in in time so we postponed it for fall. We are trying to get as much chaos as possible as you can see. lol.
- My mother graced me with her presence, last minute, like 2 days before she was going to be here she said she was visiting, I agreed.
- have I mentioned I am an idiot?
- Mother arrived the 15th of june and left on the 5th of July. In that time she maybe spoke to me once a day for MAYBE 5 minutes. She had no interest in doing anything I suggested, zoo, museum, park etc. She had plenty to say to every single person and snuck around on her phone to say it. I caught her more than once (but only confronted once) talking crap about my parenting. I woke several mornings at 5 and 6AM talking to ppl on the phone but if I was up she would ignore her phone or even better say she was going out to smoke and spend 45 mins to an hr on the phone. She talked to my hubby more than me and she can't stand him. LOL. I laugh but I admit I was hurt. She told Nina several times that if I did not stop being so mean to her (to nina) she was going to leave. Nina said wow you haven't tried to see me in 4 yrs and you think mom's being mean you are threatening to leave and you don't even know whats up. I had apparently no right to scold my daughter to not walking her dog all day, she even told gramma she (nina) was being lazy and did not care if she got in trouble. Anyway I found out shortly after she got here that she HAD to be out of her place before the end of the month, she was being evicted. She had no place to go until July when one of my siblings would be back home from a trip. I was simply a place to stay. She made no attempt to act like it was anything more. Having not seen Nina in 4+ yrs or met Damien I can count on one hand in 3 weeks that she did anything with them that involved the spending one on one time with them. As I dropped her at the bus station the day she left I told her I was happy I got to see her but that I really felt like she didn't want to be here the whole time(she left 2 days early, I found out at 1am that she wanted to be on the 10am bus the next day). She did not deny it. Long story short, I am a sucker. I really thought that it would give a chance to mend our relationship. I tried I really did. I stopped trying the evening I over heard her telling my daughter that she had tons of money and everything she had ever wanted until I was born. I am 35 yrs old and she still blames me for being the way I am and ruining her life. I learned about Damien's condition while she was here and she acted like it was no shock to her that it happened to him. Everytime hubby or I would get out of his sight even to pee she would tell him how neglected he is or mess with him just enough to get him fussing and then yell "your son needs you!" She then had the nerve to tell Nina that she was sick of starving to death here. I guess pork chops and steak dinners are beneath her, Rudy loved them though! I have come to the conclusion after this visit that I am done trying.
- Did I mention done trying to be the daughter who forgives and forgets. All that does in my family is allow them to hurt me all over again.
- None of my siblings have yet to call and even inquire about the baby.. I have not informed them of any details. I sent them all one text upon his birth and ONE replied once with "cool". I give her credit. I found out about his condition while my mother was staying with me. I instructed her NOT to repeat it to ANYone. I figure it this way. IF anyone in the family cared they would have made some attempt to call and ask about him. The only reason I told her is because hubby and I live in a very tiny apartment and we needed to discuss things. It could not wait 3 weeks to talk about it.
- Did I mention I am an idiot?
- That lasted all of 7hrs before, though she denies it, I caught her at 6:30 AM telling who knows who that Damien will be normal after this and he should be fine. I am hard of hearing so there was some stuff in between that. When I asked who she had been talking to on the phone that morning I was told I must have dreamed about the phone call. That's IT! I even changed diapers, make bottles, and jump rope in my sleep. I am talented like that. I was feeding the baby, my door was not completely shut (never is cuz its a mom thing I guess). I would get up and she would within seconds hang up every time. Still no clue who she told but it was NONE of their business unless I TOLD THEM. Who knows what he has.
- So Damien starts therapy Thursday. Nina and Damien have pre-op appointments Aug 13th the same day at the same hospital isn't that convenient lol. Appointments will begin at 7:45AM and end at 5PM and they will alternate between Damien and Nina for the day. We will likely be in Seattle for 2 overnight days. This will reflect our next few months twice a week. Except not for 2 overnights just the one.
- I am not sure what personality type I am but i have most certainly decided that I do not desire outside friends. If I am already friendly with someone that's one thing but I am done with people who can not accept that school and my family come first! I have been called a bad friend and I am not sure that is entirely false. I guess you are supposed to visit your friends a set number of times per week, you are supposed to call and text a certain amount per day and well I just don't. I am not that type of friend. to ANYone. (hubby and kids don't count) I have some friends that I talk to MAYBE once a month or less. If it weren't for Facebook (i kno i kno its evil) there are some friends I would never communicate with. at all. So I have decided NO NEW FRIENDSHIPS. I have know a gal for a year, when I met her I was not in school working surgery prepping etc. I was sitting on my big preggo ass every day and watch the clock tick. Before I started school I told her I am very driven when it comes to school. I tend to loose myself in it. This was before all of the above happened or became finalized (Nina's surgery). I promised to try not to let it happen. Well then my mother showed up my only week off from school. etc etc etc. So now the gal is talking about friends who never make effort being fake friends. Even went as far as lecturing me on how to be a good friend. I admit I don't call, text, etc every dang day. She doesn't either. I am ok with that though. I realize that she has 2 kids and one on the way in a complicated pregnancy. I get that life happens before friends. Besides I can only listen to how awful her hubby is so much. Really I mean my hubby is a Saint compared to how she describes hers. He isn't perfect but he is perfect to me. I do not get bitching about the husband that most women do. I CHOSE this man I WANTED this man to be my partner in crime life etc for ever... the day that changes and I have to bitch about every damn thing he does we END IT. Both have agreed to this. We will not stay together for the kids.
Ok so if you stuck in this long its time to reward your weary eyes with some cuteness. Sorry for the really long blog. I need to do it more often. The first one is called Zombie Damien LOL
New hat 20 weeks old last Wednesday
My favorite Pic
May 22, 2012
The xanga apphas been stupid as of late so im to lazy to blog however now that its fixed im to tired to blog proper so its 3 pics and then ill blog later. School just has me super busy. All is well otherwise. Baby is going to be 12 weeks old wednesday, 3 mos the 29th. Time flies
April 17, 2012
things are good here. im bk in school and life is busy. heres some pics for fun and cuteness factor!
day he was born
5weeks old first spring walk
i has a present for you mommy....
daddys shoulder is extra comfy
this is of Damien and Nina when they were both 6-8 weeks old
already a spock fan
before the salon (we called her side show Bobbette)
March 29, 2012
Back online changed providers its gonna save me nearly $100 per month! Comcast can kiss off i'll pay them off as slowly as possible.
March 17, 2012
From internet. Not entirely by choice but some bills and cute kids take presedance over entertainment. So i will probably be back mid april or beginning of may... I hope to returnto school april 9th...
March 4, 2012
Damien Lukas DeBois made his way into the world on leap day 2012! It was via cesearean section because lil man was breech!
Time : 12:46 pm
Length : 20 in (1/4 in shorter than big sis)
Weight : 7 lbs 10 oz ( big sis was 8 lb 4 oz)
All photos taken on ipad sorryif they aren't very good!
The surgery went well and we came home today!
He's perfectly healthy and such a good baby! Now I'm gonna post a pic or two and get some sleep while he is.