Friday, December 26, 2008

Merry Christmas!!!







My blog wished for Christmas that I would quit neglecting it- wish granted. We have been so busy getting ready for Christmas that my poor blog fell to the bottom of the priority list. Things have not been boring around here for sure. Carly had her Christmas program at school and she was delighted to have been chosen to be one of the angels. Obviously, her halo had to be worn a bit crooked. Santa came to our house a day early since Kenneth was on duty Christmas day. He brought Carly the Rose Petal Cottage which she keeps calling the Rose Petal College. She asked me how I got Santa to come a day early. I explained to her that I had Santa's phone number and had called and made a special request. She immediately wanted the phone number. I told her she couldn't have it because she would be calling him all of the time. She assured me she wouldn't because, "No I wouldn't mama, I would call the elves." Too smart that girl!! Again, my mother of the year nomination was rejected... Carly had been complaining about her ear hurting. She had tubes put in about 3 years ago and I had my mom look and it seemed one of her tubes had fallen out. Carly kept complaining that when she stuck her finger in ear it made a funny noise so I politely told her to quit sticking her finger in her ear. It was one weird complaint after another about her ear but I just assumed she was adjusting to noise and pressure changes without the tube. Wrong- the school called on Tuesday to let me know she had green drainage coming from her ear. The pain was gone though so I guess the eardrum ruptured. She's on antibiotics and on the mend now. Oops, I guess I should have listened to her. Anna is doing well. Her walking is more running now and she is becoming more and more opinionated and ornery. She looks so sweet and has such a soft, sweet voice but she is a little twerp. She has become quite good at shaking her head no and then laughing after she does whatever it was she shook her head no about because she knew she wasn't supposed to do it. We had another little scare with her. She had a little abdominal mass thing that Dr Klein felt needed to have an ultrasound done on it. We did the ultrasound and it found some area of enhancement on her liver which could have meant terrible things. We went to a surgeon at Cooks and found that it was some weird herniated piece of fat. It does not require surgical repair at this point and we are so thankful for that. Yet another thing that is just weird with Anna, not bad, just weird. I hope you all had a very Merry Christmas. Hopefully you are relaxing today and enjoying all of your new toys. I know we have a bunch of toys that may "mysteriously" loose their batteries within the next few days. I have to go into work at 11 today. I was so happy to get that phone call at 5 this am as I was struggling to get out of bed that I could come in at 11, what an awesome after Christmas gift...

Tuesday, December 9, 2008

If You Have Not

If you have not:
1. Been in bed for 14 weeks while pregnant
2. Wondered if you and/or your child would survive
3. Known from the beginning of your child's life something was a bit "off"
4. Been told and caught completely off guard at a GI appointment that you might ought to see a neurologist
5. Had your child be diagnosed with a condition that is anybody's best guess why it really happened and told that although cerebral palsy doesn't get worse it never goes away
6. Been told that you r child's potential will only be known years down the road and to not get your hopes up too much but to hope for the best
7. Had to have your child tested for dreaded genetic disorders because the doctors agree something else is wrong but cannot put their finger on it and wait 6-8 weeks for results
8. Had to pay more than you could afford to feed your child because of allergies
9. Known that feeding your child those allergic foods causes much distress and sharing that with others only to have them feed your child those foods right under your nose
10. Had to answer questions on a daily basis about why your child is so skinny and have people look at you like "feed her"
11. Had to explain to a 3 year old why her sister is needing extra help
12. Been so happy to see your child progress so far in so little time
13. Had to make decisions about when to draw the line with Dr. appointments and when to keep searching for more answers
14. Been told your child has a cyst in her brain but "not to worry about it"
15. Had to deal with rude people who are constantly questioning your parenting skills

If you have not done these things, you have not walked in my shoes. You need not judge me and how I have chosen to take care of my children. It might not be the way you would have done it but hey, it's not your life. I try to be positive. I realize I am blessed. That being said, I did not make these diagnoses, I have just tried my best to help Anna overcome them and feel I have done a pretty damn good job. Perhaps a pat on the back instead of a snide remark would be nice, if that's not too much to ask...

Thursday, December 4, 2008

Bittersweet





Happy Birthday Anna! Her first birthday was yesterday but we had her party last Sunday. It was low key and quite enjoyable. It was fun to watch Anna smear her icing all over everything. I know my parents got some great pictures and I'll try to post them later when I get access to them. The ones above are from our camera and pretty much suck but oh well. I absolutely cannot believe my baby is one. This past year has been a whirlwind and by far the most bittersweet year of my life. My reflections on the past year brought smiles and tears and I am not sure which I did more of. I cannot believe all we have been though over the past year. I cannot believe the progress that we have made and I cannot believe how far we still have to go. I still cannot believe my baby has CP- some days it is acceptable and other days it just really pisses me off and then other days I still deny it. I guess the diagnosis doesn't really matter in light of the fact that she is doing so well but it is still there and not ever going away. I look at my baby and I think she is so beautiful and looks so normal and then I wonder if that's just because I am her mom. I wonder if when other people look at her if they can tell something is wrong or if she looks "normal" to them. I worked yesterday since i didn't really think Anna would know it was her birthday and we had already celebrated. I took care of a woman in DIC which basically means she was bleeding uncontrollably internally and externally due to a problem with her clotting factors. I spent the entire day in her room and at the end of my shift had transfused 12 liters of blood products to her. Her story is long and sad and although she made it through yesterday, she died at about 10:45 this morning. It broke my heart to see this woman's husband, he just kept saying how he didn't know how to live without her. Long story short- this woman went in to have a tumor removed from her ovary and then ended up with a total hysterectomy and then went into DIC and then died. So as I tried to keep my thoughts focused on my patient I also kept thinking of Anna and Carly and having the realization that DIC happens when the clotting cascade fails and in HELLP syndrome which is a variant of preeclampsia that is what happens too. I saw this lady bleed out before my eyes and as I looked at her oozing from every orifice lying there in puddles of her own blood which was dripping off of the bed onto the floor and she was too unstable to move I realized more than ever why I cannot ever have another baby. Life is short. This woman went in for a small procedure and was supposed to go home later that night or the next morning and ended up leaving in a body bag. I have seen a lot of bad things in my career and I have seen things that will forever be etched into my mind but this one tops them all. I have so much more I want to say but my bed just keeps yelling my name over and over and I have learned that it does not like to be ignored...

Friday, November 28, 2008

Motel or Patel?

I have waited what seems like a lifetime for a peaceful holiday and my wish was finally granted. I do not know what I have done to deserve such a fine holiday but I refuse to look for answers, I just enjoyed it for what it was. For as long as I can remember we have celebrated holidays at my grandparents house full of 20-30 people whom would likely rather throw darts at each other than spend a day together but on that day we would all smile and discuss surface topics and be polite and eat lunch and cringe wondering who would be the first person to say something audible to piss another off rather than muttering it under their breath. The tension was ungodly and likely the source of the constant acid reflux I feel brewing around the holidays. The reason this fun gathering was cancelled was a sad one but as with all things in life, things happen for a reason. My grandfather is getting old and has grown quite ill with his Parkinsons and neuropathy over the past few years, especially the past year. My mother and her siblings cannot agree on how to best care for him so they mostly choose just to ignore each other. It was for these reasons that Thanksgiving was held at my parents house with only a few of us in attendance. We all fit at one table and no one was forced to eat out in the garage where I spent many a Thanksgiving as my grandmother felt this was the only appropriate spot for children to graze over their holiday dinner. Bad decision on her part because it usually ended in a food fight. There was no finer way to piss off a grandmother than to disrespect the food she had spent all day preparing. Then it was off to Kenneth's family and we had a good time there as well (and possibly 1 too many drinks). These holidays were not rushed and being spared the usual dysfunction was so refreshing. The only crappy part was that I didn't get to see my sister thanks to the good old US Army. I shopped some with mom today. We were not looking for black Friday crap and in fact didn't even begin shopping until well after noon. Anna's BD party is on Sunday though so we had to get some things accomplished. I heard of someone dying in Long Island because they were trampled at Wal-Mart. Merry Freakin Christmas!! I thought long and hard about his one and could not find one single item or combined number of items that are worth hurting someone over. Perhaps their insurance company cut off their meds too- I hope there is some logical explanation but I fear it is just one more example of how messed up our society has become. On an interesting note did you know that motel and Patel really are synonymous? I was reading that in the last 25 years, Indians (dot not feather) have acquired some 20,000 motels in America. That is roughly 50% of economy motels and 40% of all motel/hotels in America. Of those 20,000 Indian owned motels, 70% of them are owned by Indians named "Patel." That means 1/3 off all hotels and motels in America are truly owned by Patels. Maybe next week I'll research the 7-11s...

Tuesday, November 25, 2008

Giving Thanks Early

Well, Thanksgiving is coming up and I may not have another free moment until then to list the things I am thankful for so I think I'll do it now. I am thankful for:

1. Jesus Christ and the fact that he died on the cross so that I may live freely.
2. My country and those who have fought and even died so that I can live freely and worship my God in this country
3. My husband. Wow, how do I sum this one up? He has been with me through some pretty nasty stuff and there have been times it would really have been easier to just pack up and go. When those times come he is willing to reprioritize his life and get things in order again. He loves me unconditionally and makes our home a place I can come to and just be me, no matter what that means at the time. He loves me for me and loves our kids and believes that God is the head of this house. He believes I am the only woman he needs in his life to be happy and reminds me of this frequently. He tells me I am beautiful even when I look like hell and says it like he means it. He is my knight in shining armor. He is all of the things I told God I wanted in a man and he is the things I didn't even know I wanted in a man but that God knew.
4. My kids. They can make me laugh and cry all in one moment and for so many reasons. They have changed my life for the better and enriched it in ways I never knew were possible. They make me want to be a better person so that they may always have a good example to live by of what a wife, mother, sister, friend, etc. should be.
5. The rest of my family for their love and friendship.
6. My friends- each of them for different reasons.
7. My job. I love it sometimes and loathe it at other times but in this unsure economy I am so thankful to have a job.
8. The last year- although it has not been easy it has been full of lessons I would not have learned otherwise.

I could go on forever but these are the biggies...

Friday, November 21, 2008

Ramblings

I bet lots of people in my life are enjoying me right now...I lost my voice. I squeak here and there but that's about it. I get this crap every time the seasons change so I guess winter is officially here. I am off on Thanksgiving this year and am so glad to get to spend it with my family. I spent it last year with the hospital staff but it wasn't because I was working. It is funny how your mind has a way of freaking out when you get close to anniversary dates of bad things. I can remember back after Anthony beat the shit out of me that every year about that time I would have a freak out week and after a few days of it I would realize it was near that anniversary date. It has been 10 years now since that happened in 1998 and the pain is gone. I think the pain mostly went away when I finally came to a point of forgiveness. I did not forgive him because he needed me to, I forgave him because I needed me to. It released the power he had over me and allowed me to move on. (BTW, although Anthony was never convicted in the rape and assault trials he later ended up doing time for child abuse. I wish the court would have listened to Mindy and I and I hate it for that poor child but I am glad he finally got what was coming to him.) I can remember being afraid to go anywhere without my protective order and now I couldn't find a copy of it if I wanted to. I suppose it is still in effect, who knows? I wonder if forgiveness still counts if we do it for selfish reasons. Anyway, I was in the hospital at this time last year and I have cried more about it lately than I think I did when I was going through it last year. I know that a lot of people probably think I really need to move on and get over it but I just can't. I know the preeclampsia experience itself is over but the lasting effects I am afraid will never go away. My heart breaks for the loss of a dream- the dream of another pregnancy, a healthy one, where my baby comes out okay in the end. I thought I was over this but it just keeps coming back. Yeah, I've thought about and talked about and toyed with the idea of visiting a high risk doctor and seeing what my odds are but then I have to get realistic- the dream is over. It's too much of a crap shoot- I could have a healthy pregnancy and baby but it is unlikely and the truth is it would probably be worse and the next baby could make our journey with Anna look like cake walk. I love being a mommy though and I have so much to give and I so badly want to be able to give that. I have screwed up a lot of things in my life but I am a good mother and I enjoy doing the things I am good at. I am excited for Anna's birthday to be here in a couple of weeks but I am also afraid I will fall apart. I wonder if this pain will be gone in ten years also- that seems like a lifetime away...

Tuesday, November 18, 2008

The Dreaded Shots




EI came out today. They were so pleased with Anna's progress. I had cancelled her last appointment because it was on the same day she got tubes in her ears so they had not seen her in awhile. They were so proud to see her up walking and actually with a little hair on her head. Our next step is to work on communication. They still think she is a bit behind but since she probably couldn't hear through all of that crap in her ears that is not unexpected. The bad news- to get her to make more noise we are supposed to only give her a pacifier when she is going to sleep. That may not be so easy but I am willing to give it a try. I have to pick Carly up from school in a little bit and take her to ballet. She does not know we will be making a pit stop to get her flu shot and second Hep A shot. I am not looking forward to it and I am sure when she figures it out she won't be either. She cracked me up the other day- she told Kenneth that DeeDee (her stuffed dog) was very tired because she didn't get any sleep because of Kenneth's snoring. Score 1 for Carly!! Yesterday was a sad day at work- there was a relatively young woman whose death was imminent- we had already coded her a few times and her life was nearing its end. She has 2 sons, 16 & 18 years old who have no father and no other real support system. The mother had lost her job and subsequently her home. She and her sons were living in a motel paid for by their church. The boys know who their fathers are but their fathers have never been in their lives. These boys were awesome- honor students with college scholarships who attend school full time and work 30+ hours a week. Since the 18 year old was the "next of kin" he had to make all of the decisions regarding his mother's medical care. I cannot imagine being 18 and trying to decide whether to take my mom off of the ventilator and let her go and then knowing I would be left with a brother to care for with no money, no home, etc. My heart broke for those poor boys. I just wanted to bring them home with me. If you are the praying type please include these boys in your prayers, they're going to need them. Well, off to gets the shots. Wish me luck!!!
P.S. 1. The patient died shortly after my shift ended yesterday. 2. Carly needs 5 additional shots, grrrrrr.

Thursday, November 13, 2008

Anna's Freakin Ears!!!

I am feeling so much better- thank God!! I am again a normal human being and hoping to stay that way for a long time to come. I am working 5 shifts this week so I am staying busy fo sho!! Christmas is coming and the bills never stop coming so it is necessary. I've had the fortune of mostly nice patients lately so that has helped. I am excited to see what my check will look like- I've never worked this much in one pay period before. Anyway, since I have and will be gone so much this week I kept Carly home today so we could spend some quality time together. We baked cookies which is one of her favorite things to do. They actually turned out pretty good. I made myself sick eating them. She was so good all day today, I really enjoyed our time together. There are days when I swear she hates me but luckily today was one of those days when I was in her good graces. Anna is walking all over the place. She basically walks if she needs to carry something and crawls if she needs to get somewhere fast. She is cutting 2 or 3 more teeth and becoming more of a kid every day. I cannot believe she is about to be a year old. It is bittersweet. She has another freakin ear infection so we restarted the ear drops today. She is waking up every 2 or 3 hours again in pain and Kenneth and I are doing our best to let each other rest when we can. It is exhausting. I think I can count on one hand the number of times she has slept through the night since her birth. My cousin's wife had a baby in August and she is already taking 8 oz of milk at bedtime and sleeping all night. Anna takes 3-4 ounces and sleeps 2-3 hours at a time. On a happier note, I found a place to order Anna's Elecare for almost $100 cheaper per case (6 cans). This will save us at least $150-200/month which I find pretty exciting. We are supposed to have her allergy tested at one year to recheck for milk/soy allergy. If she doesn't react we are free to switch to cow's milk at that time. If she does react to milk we can use soy but if she reacts to milk and soy we will pretty much be stuck with Elecare. Dr. Ogunmola said we could switch to rice milk at some point if we can find an alternate protein source because apparently rice milk has very little protein. Well, both of the kids are in bed and asleep for this moment so I think I had better get to bed now also, 5am will come early...

Monday, November 10, 2008

Yucky

Bitchy- check. Irritable-check. Headache-check. Nausea-check. Electrical shocks throughout the brain- check. Body aches- check. Crying a lot- check. Sad- check. Angry- check. This is miserable. I am taking the Effexor and Pristiq and I am not sure what is causing all of this- the new med or less of the old med. I am no fun to be around right now, I know that much. It is no secret that I did a lot of drugs earlier in my life during the college years. I guess I was never "addicted" to them because I have never in my life felt this bad coming off of something. I wish I could just go to sleep for a few weeks and sleep this off but I need time to stand still for everything else while I sleep so I don't miss my kids doing stuff, Kenneth, work, and stuff like that. Anna is taking 5 steps and if I sleep for 2 weeks she'll be running when I wake up. I hate this!! I took care of a schizophrenic lady at work yesterday and I see it could be much worse, I have not lost sight of that but I also know it could be better.

Thursday, November 6, 2008

No Cold Turkey For Me

Dear God,
Thank you so much for hearing my cries and answering my prayers.

Love,
Your Child

Do you ever wonder why I think my God is so great? Well, it's really simple- it is because he is. My prayers were answered in a strange way. I was at work today and got a phone call from a friend. She called to tell me she had some Effexor samples (the taper packs) that she no longer needs and would give them to me if I wanted them. She says she didn't like the way the medicine made her feel. I happily took the samples off of her hands and now I do not have to go through the hell of coming off the Effexor cold turkey. I am soooo happy!!! I started the Pristiq today and I am just trying to be positive and hopeful and believe that this will work for me!

Tuesday, November 4, 2008

Irreplaceable

I am so frustrated amd angry I could scream and before this madness is all over with I probably will. Let me give you a little history for those of you who don't know it. I have major depression and anxiety which started very early in my childhood. I was FINALLY put on medication at about 12 years old and have been on it since except for a few brief periods when I thought I didn't need it and learned very quickly why I did. It has taken many years of tinkering with the meds to get it right. I have seen many different doctors, all of which tried their cocktail of drugs for me. Since being started on meds I have taken Tofranil, Paxil, Zoloft, Lexapro, Celexa, Prozac, Wellbutrin, Depakote, Lithium, Seroquel, Risperdal, Zyprexa, Ativan, Concerta, Abilify, Cymbalta, Klonopin, Lamictal and Effexor XR. Some worked for a brief time and then quit, some never worked, some made me gain horrid amounts of weight, some gave me acne, some made my muscles rigid, some made my hair fall out a bit, some made me a raving bitch, some never helped, some ended me up in the ER with a hypertensive crisis... But there is one that works and has worked for years and makes me the normalish person I am today. People who don't know my history ask how I am so even tempered and laid back- it is not me, it is the Effexor. The drug has its side effects, don't get me wrong- it makes me sweat like crazy, keeps my B/P a bit elevated, and sometimes makes me nauseated and jittery. These side effects are mild and I am willing to trade them any day for the way I feel off of the medication. Off of this medication I can singlehandedly destroy relationships, my career, my finances, and anything else near and dear to me in a matter of minutes. My mood swings are unpredictable and my depression, anxiety, and anger are uncontrollable. I am not a nice person off of my meds and I am unpredictable as hell. I am not ashamed of these things, I was born this way. I really think that my depression has helped me to feel things deeper and therefore be much more compassionate than most. I used to be afraid to tell people I was on meds but over the years I have become confident of the fact that I had nothing to do with putting together my chemical makeup and its flaws so I have nothing to be afraid of. OK, so enough of the background- I think you get the point, I need the Effexor, this is not optional for me and never will be. Fast forward to today. I go to the pharmacy to pick up my Effexor just like I have every month for as long as I can remember and the pharmacist says, "That will be $135." Uh, no it won't. It has always been $35 so now why all of the sudden is it $135. He tries to run it again and gets the same price. I told him I would call the insurance company and have the mistake corrected and then come pick it up later. I call the insurance company and here is where it all went downhill. Our drug benefit is 70/30. They pay 70% and we pay 30% of whatever the drug cost is. They have never before chosen or cared which drug we chose- if we chose the more expensive drug that just meant our 30% was more money out of our pocket. After being hung up on by the first idiot (I had to explain my plan to her and she works for the insurance company) I got a very nice lady who explained that Effexor is "no longer covered." I talked at length with her and her supervisor who couldn't tell me why. I explained that we have never ever had a a drug rejected and that our plan does not have tiers- we can chose what drug we want. They said yes, but not this drug, we will no longer cover it at all. If you chose to stay on it you will have to pay the $135/month. They then proceed to tell me that I should try instead a new drug called Pristiq which is the "new Effexor." I can get it for $29/month. Here's the scoop- Effexor will be going generic soon so Wyeth Pharmaceuticals has come out with Pristiq which is the s-isomer of Effexor- that means it is supposed to have Effexor's good properties and eliminate the bad side effects. In theory that is splendid. For me, not so great. If you have ever taken Effexor and stopped it abruptly you will know that the withdrawal is unbearable (you should really google "Effexor withdrawal"). I am out of pills so here is where my withdrawal begins. I have done much reading and the Effexor should be tapered. The Pristiq is not the same as Effexor and thus will not stop the withdrawal. So back to the Wyeth thing- in an effort to not loose the billions of dollars they are making a year on Effexor when it looses its patent they are offering incentives for insurances, etc. to cover Pristiq and not Effexor so they continue to make their money after the Effexor is generic. So the withdrawal will happen, I cannot stop it. I am going to be sick and that is just how it is. I can deal with that but here's the real bitch of it all- what if the Pristiq doesn't work? If it takes about 4 weeks to get a good level in my system that is 4 weeks I could potentially be crazy. Then if it doesn't work and by some miracle the insurance says, "OK, you tried and failed the Pristiq, we will cover your Effexor" it will take 4 more weeks to build an Effexor level back up. Yep folks, won't the holidays be grand? If this crap doesn't work the devastation that will happen in my life will be unimaginable. I am scared shitless and just want my Effexor back... Please pray for me, my family, my friends, and my coworkers. I am not kidding, we will all need it. If you have ever had the misfortune of being around me off of medication you know I am serious. I am so angry with the insurance and the drug company- they are not just messing with meds, they are messing with my life. Seriously, if you are a drug company and you are going to jack with a patient population would you honestly choose the psych population to jack with- probably not a wise decision, eh?

Sunday, November 2, 2008

Wal-Martians and Donkeys?????




My sister and her family came to Texas to visit last week. We started the week with a surprise Welcome Home Party as her husband's parent's house in Colleyville on Sunday. I was amazed that Anthony was actually surprised- most surprise parties don't seem to work that way. We had some awesome barbecue and good conversation and it was nice to see Anthony back on U.S. soil. On Monday they drove up to my parent's house and we spent a few days together there. The kids had so much fun together. We ate way too much food but enjoyed every bite. We all hated to see them leave, especially Carly who is "depressed because Ainsley left me." Oh, the abandonment issues never end. Our beloved Eeyore. Anna is taking 1-3 steps on her own now. I can't believe it. She continues to amaze us with her accomplishments and continues to reinforce that not knowing the word "can't" makes a huge difference. I am so glad that in the times we worried most about her and were afraid of what she would and would not be able to do that she was unaware of it all. Anna's ears- they apparently did not get the memo that the tubes were supposed to fix them. Since last Tuesday she has had pus running out of them off and on and is having fever and not sleeping again. She is back on antibiotics and antibiotic ear drops and she goes back to the ENT on Monday. The ENT's office is really beginning to frustrate me because they keep telling me to just give her Zyrtec. Hey dumb asses- Zyrtec is great for drying up snot, but not so sure it dries up pus. They are convinced it is just snot even though I have had my sister and her husband (both doctors), Dr. Klein, and Dr. Ogunmola all say it is pus. I am glad the tubes are in though, at least it is draining instead of being trapped in her ears. Still, it is nasty and it needs to be gone. She sleeps very little as it is- throw in runny ears, fever, and teething and I'm pretty sure we'd get no sleep at all. She did sleep 5 hours last night and I think we slept 3 the night before. When Kenneth got home today he graciously let me nap and what was supposed to be a little nap turned into a 6 hour one. I slept so good and woke up a zombie. I went to Wal-Mart with all of the other Wal-Martians who had just woken up from Sunday naps and I made a vow to never again return to that god forsaken place on Sunday. Seriously, it should have tipped me off to the population inside when the car parked next to me had Arkansas plates which proudly read "Donkeys." If you got personalized plates and were willing to pay the state extra money for them wouldn't you pick something to say besides "Donkeys?"

Monday, October 27, 2008

Zoo Boo

Melane and I took the kiddos to Zoo Boo at the Frank Buck Zoo on Saturday. The kids had a great time. Carly wasn't really scared of the costumes with the exception of one mask from Scream which actually was kind of creepy. What did scare her you ask? The giraffe. Nope, not the monsters, it was the friggin zoo employee dressed up like a giraffe. Uh, Valium please.

Friday, October 24, 2008

Musical Beds

One question- why am I blogging at 2:30 am when I have to be up at 5 am to get ready for work? One answer- I am idiot and a pushover. My kids are in my bed, both lying sideways, leaving no room for momma. Carly sleeps with me on the nights Kenneth is gone, we have always done that. Anna woke up with a wet diaper and wet clothes and wet sheets. Why all of the sudden did the diapers start leaking? Who knows but of course it couldn't happen during the day, oh no, only at 2 am. So after changing her diaper and clothes she was wide awake so I gave her a bottle and she went back to sleep but rather than changing her sheets I put her in my bed. So they both turn sideways and here I am, no place to sleep at 2:30am. I turn them back the right way, they turn back sideways. It is a conspiracy, I'm convinced! I think I'll go lay in Carly's bed because hey, musical beds is fun in the wee hours of the night, right? Yeah, I know, it's my fault that they end up in my bed. I think I should just remove the furniture from my room and make the whole room one big mattress because with the way these girls sleep our king size will never be big enough. I suppose I'll stop griping now, at least they are sleeping...

Wednesday, October 22, 2008

The Tubes Are In

Anna got her tubes in yesterday. Other than being up all night the night before and having to leave the house at 5am things went well. Her left ear was worse than the right and she had some abscess in her left. Dr. Price opened and drained that and said it should heal on its own. I am so glad we went ahead with the tubes because that probably would not have ever healed with oral antibiotics. The left ear is still draining quite a bit but they said that is to be expected. Anna was such a different child yesterday. She laughed more, played more, and was already making more sounds. She was back to the old Anna, the one doesn't constantly fuss. She must have been hurting so bad, my poor baby! I am so glad she is on the mend. Carly spent Monday night with my parents and wore them out. I try to have her in bed at 8:30 but she was apparently still going strong at 11:30 for them. She loves her Nana and Pops and never seems to get enough of them. We carved pumpkins last night with Carly and the neighbor kids. They had fun and I was proud of my carving skills. This was my first carve ever. Growing up, my parents always did them and Kenneth has done them since we have been married. Our Safety Patrol, Carly, was quite worried about lighting the candles in them for fear they would catch on fire. I'm pretty sure a Valium salt lick is in that kid's future. She is so nervous about everything. I used to really worry about her worrying so much (wonder where she gets it) but am pleased to say it seems she is getting a little better as time passes by. She still asks every time I'm driving, "Momma, are you driving perfect?" She is still convinced a speeding ticket=jail time. I am happy to say I have not been pulled over again and have really tried to reform my driving. I can't really help it if my foot is made of lead...

Sunday, October 19, 2008

My Treasures

We went to the Pumpkin Patch yesterday. I was so excited to finally get to go this year. 2 years ago I was at a wedding shower that I did not want to miss and last year I was enjoying those fine days of never ending hospitalization. We all had a great time and were all worn out by the time it was over. It is refreshing that people still do things like pumpkin patches and keep them affordable so that most people can enjoy them. It was also nice to see so many parents out there with their kids and really enjoying their kids. I think sometimes we get so wrapped up in our


daily lives and getting the kids up and dressed and off to school and so on that we forget to really just enjoy them. Maybe not everybody is that way but I know I am guilty of it a lot of the time. Kids are given to us as a gift and we should love and enjoy them as such. (Don't get me wrong, there are still those days when I want to hang them up by their toes!) I just see my friends who would give anything to have a child and it makes me realize how lucky I am for the 2 I have and how I need to treasure them!!



Friday, October 17, 2008

The Brady Bill?







There have been a lot of things going on around here lately but there has been one thing that has not happened at all- SLEEP. I am so crabby and I need some zzzz more than I think I ever have before in my life. I fell asleep in a meeting at work yesterday and required an energy drink to recover. Anna has been up about every hour all night for the past 4-5 nights. She has ear infections in both ears which are not getting any better with antibiotics. We took her tot he ENT on Monday and he wanted to put her tubes in the next day. Our damn insurance requires some 3 day waiting period to give authorization so it won't be until next Tuesday. I was so irritated. It's not like we were some crazed lunatics trying to buy some high powered automatic weapon. I never knew the Brady Bill applied to tubes in the ears but apparently according to our insurance it does. The good news is that we have met out total out of pocket for the year so the procedure and all related costs will be covered at 100%- yippee!! The weather has been beautiful and we are so thankful for that. We kept our niece and nephew last weekend and spent a lot of time outside. The kids really enjoyed it. I did too and I hope the nice weather continues. My BIL made it home from Afghanistan and I am so happy for that. There were a few snaffoos with him getting home but he made it and only 1 day late. I am proud of him and his service to this country as well as for all of the other soldiers. I have much to be thankful for as God continues to bless us in our daily lives.

Wednesday, October 8, 2008

The Best Welfare Plan- Get A Job




The fun just never stops around here. So Carly started feeling bad Sunday before last and I decided from her complaints that she had a bladder infection. She gets them all of the time and I know the drill- no Dr. appointment necessary- or so I thought. I had her usual antibiotic called in and started her on it right away and was giving her Tylenol and Motrin to keep her fever down. She went to Oklahoma City with her friend Elaina on Monday to see Veggie Tales live and then proceeded to start puking on the way home and puked the whole way home. When she gets high fevers she pukes so I still was not panicking but I felt horrible for Elaina's parents who were forced to clean my kids puke for about 2 1/2 hrs. They were so sweet about it though. She continued to have fever Tuesday and Wednesday and I couldn't take her to the Dr. on Wednesday because Dr. Klein does not work on Wednesdays. So finally on Thursday she was looking close to death and complaining of having a dry mouth and lips so I knew dehydration was on its way. Dr. Klein changed her antibiotic and then wanted to see her back the next day if she wasn't significantly better. She wasn't- still spiking temps of 104 and shivering... He sent her for some labs and as luck would have it we ended up in the ER instead. I was so proud of Carly. She hardly cried when they started her IV (due to some serious bribery from her Nana but hey, I'm not above bribery). The nurses and Dr. were so very nice and after some IV antibiotics we were on our way. She was so much better after that and has been ok since. Nothing is ever easy with us , I swear. She looks ok in the picture but that was after Motrin and lots of stickers. She was looking at my mom while we were in the ER and said the funniest thing. My mom had a really bad wreck a few years back and after reconstructive surgery had her eyebrows removed and then tattooed on because after the surgeries they were not even. She then pencils them in a bit over the tattoo and they look pretty good. That particular night they were kind of purple looking- I'm not sure why. Carly looks at my mom and says, "Nana, do every body's eyebrows turn purple after their fur falls out?" Anna continues to do well. She never ceases to amaze us with her continued progress. I cleaned house today and Kenneth worked out in the yard. It isn't often that the inside and outside both look really good at the same time. My BIL gets home from Afghanistan on Sunday. I am so excited for my sister and her kids. I cannot imagine being without my hubby for 6 months- she has done a phenomenal job of going it alone! I work the next couple of days and then we will probably go to Depot Days this weekend. We had this crazy lady at work (recurrent theme, I know) who was brought in by EMS. She had quit taking her blood pressure medicine because she ran out and was instead taking her friend's medicine. Keep in mind she did not know what her friend was on, but she reasoned all blood pressure meds must be the same. (Note to self- crack does bad things to your reasoning skills.) This lady is 45 and has already had 2 strokes due to her crack use. Anyway, she was crying to the doctor about how poor she is and how she cannot afford the $4 for her meds. The doctor was awesome. He says, "Do you by chance grow your own crack?" She says, "How do you know I smoke crack?" He says, "I saw your drug screen and again I ask you do you grow your own crack?" She replies, "No!!" He then says,"Well, you afford your crack then so afford your blood pressure meds." I loved it. I get so sick of people who can afford their drugs, beer, and cigarettes, but cannot spend $4 on meds. They would rather spend our tax dollars sitting in the hospital and blaming society for them not having a job and not being able to afford anything (except the above mentioned items). If I have to take a drug test to get/keep my job and make money shouldn't those on welfare have to take a drug test before they get the money I had to pass a drug test to make? I once heard a patient's thug daughter say, "Say, y'all gots any free foods around here. I'm tard (tired) of spendin all my muney to buy food fer me." Are you kidding me? What a shame- you have to feed yourself, WTH...

Thursday, October 2, 2008

Introducing Anna's First Fat Roll




Do you think a week will ever exist when both of my children are well? Last week it was Anna's ear infection and this week it's Carly's bladder infection. They have both been troopers though, especially Carly who has even taken 3AM trips to Wal-Mart with me when her fever hit 104 and we were out of Motrin. Isn't it just like a man to not tell you he used the last of the Motrin and you discover it at 3AM and he volunteers to stay with the baby and sleep while you get up and dressed and go on a shopping trip? Oh well, he tries. I can't gripe too much. He is a wonderful husband and father and he can't help those things which genetics prevent men from "getting." We had a great neurologist visit last week. We were told that kids just don't go from high tone to near normal tone but that is what Anna has done. With good nutrition and an awesome God who heard our cries and answered our prayers it looks like our little girl will be able to overcome most, if not all, of the obstacles she has faced in her life. We couldn't be happier. We have also begun to finally see good weight gain in Anna on the Elecare. She finally has a fat roll on her legs!!!! I knew all along she was not getting enough nutrition but I had no idea what a difference it could make. She still only takes about 4 oz at a time but it is 4 oz she can process and use. Please keep your prayer engines running, it appears it is working...

Sunday, September 28, 2008

I Must Get This Out Of My System

Dear ***** , (after reading this you will know if you are her)
I can't believe I am even wasting my time writing this but I feel I must get this off of my chest. This blog was created to keep my family and friends informed about our lives and our progress, it was never meant to be fodder for your everyday conversations since you are neither family or friend. The health of myself and my children has nothing to do with you and I have no idea why you feel that it does. If you had gotten the story straight from me or at least just gotten the straight story you would know that what you are saying is total crap. In the beginning it was Dr. Klein who sent Anna to the GI doctor, I did not beg to go. Nor do I think Dr. Klein refers patients for the hell of it, I think he usually has a fairly good reason. It was that GI who suggested there might be something wrong with Anna and suggested we should get to a neurologist. That first neurologist, who is well known in his field, did indeed say she has CP. I seriously doubt a well known neurologist would label a child with a condition because as you put it, "she [meaning me] wants there to be something wrong with that baby." Perhaps you should dig deeper into our medical records as you apparently already have and you would see this. It was again Dr. Klein who referred us to see endocrinology due to Anna's failure to gain weight. I am quite sure that once again he had a good reason, he did not just send us because he thinks it is fun for me to be driving all over creation. It was that Dr. who then sent us on to genetics. We then had to switch neurologists because the first one left his practice. That neurologist changed the diagnosis to static encephalopathy which is just another fancy word for CP but you are likely not wise enough to understand that static means not changing and encephalopathy means damage to the brain and you probably do not care enough to look it up. I did seek out another GI on my own because we were still having stomach problems with Anna. I am also quite sure that Early Intervention does not just sign kids up for the hell of it, there has to be a reason and I am pretty sure that "crazy mother" is not on the list of qualified diagnoses. I am glad when labs come back normal as most of Anna's have. However, if you had any knowledge of CP you would know labs and other tests do come back normal most of the time, it is simply a problem with muscle tone which will not show up on any lab and possibly not on any MRI either. I strive to get the best for my children and if having 10,000 labs drawn and seeing every doctor we are referred to is what it takes then that is what I will do to ensure that my children have the best chance at a normal life. Problems found early can often times be corrected and then the child can go on to lead a normal life. Isn't that what we all want for our children- to have the best chance at a normal life? I do not WANT something to be wrong with my child. I did not WANT to have the type of pregnancy that I did. I realize I am blessed to have my child at all. I am not really sure what it is about me that makes you feel the need to say things about me that are untrue or to use my personal life as petty gossip. Furthermore, I do not understand why you think it is ok for you to read our medical records just because you are an employee of Dr. Klein's office. Unless you are Dr. Klein, his nurse, or maybe the biller, you really have no reason to look at any of our records and quite frankly I do not see why you would want to. Are our lives that interesting or is yours really that boring and pathetic? I have always laughed at HIPPA but now I see it was created so that pathetic people like yourself would not be able to do what you love to do most- snoop into other people's business and then spread it around using some half-truths and mostly non-truths. You are not a friend to me nor have you ever been. You pretend to be friendly to my face and then no sooner do you turn around, you have nasty things to say. I have had enough. I would suggest you refrain from any further reading of our records or from other slanderous remarks because my patience with you is wearing thin. Perhaps the time you spend meddling in my life would be much better spent in therapy for yourself because it is apparent to me and all of those around you that you have got issues that need to be dealt with.

Tuesday, September 23, 2008

Hand Washing 101

Seriously, I am not a man basher but what makes it so hard sometimes for 2 brain cells to fire at the same time in a man's brain? Both of the kids were in their beds sleeping and Anna lost her pacifier and started crying. Kenneth, being the sweet daddy that he is, went and quickly and gently replaced it. He came back in the living room and suddenly there was a horrendous scream coming from Anna. Note to all men- while preparing beef jerky using crushed red pepper, wash hands before touching baby's pacifier. Needless to say Anna screamed for a bit and had snot and tears running down her face for quite awhile. Ever seen those episodes of Cops where the bad guys get the peeper spray in their face? I gave her cold formula hoping it would stop the burn and I guess eventually it did because she went back to sleep. Things have been pretty uneventful around here. I like it!! Carly jumped off a stool in the bathroom at school and fell flat on her chin and has a nice goose egg covering her entire chin. It looks like she took a purple marker to it- nice! I've got to get that on camera!! Luckily Miss Shawna was there to rescue her and provide the ice pack which runs a close second to band-aids with Carly. She is at that stage where blood or no blood- a band aid will cure all. EI came out today and has decreased their visits to once monthly since Anna is doing so well. She is letting go of stuff now and will likely be walking soon. If I have learned anything it is to NEVER EVER underestimate your children. They will do more than you ever dream of and they will do it whether you are paying attention or not so you had better pay attention. I have to work tomorrow but just cannot make myself go to bed. I know, this classifies me as an idiot and I will pay dearly tomorrow but I just can't force myself. Hmmm, work has been crazy. If people only knew the things I have to do at work they would cease to be my friends I am pretty sure. Sometimes it is just down right nasty. And the patients- they just keep getting crazier...HIV positive patients ripping out IVs and squirting blood at their nurses and patients refusing to give consent for an ambulance to transport them home until their demands are met (um, yeah, I think I was a hostage that day) and 500 lb gastric bypass patients who want us to take sensitivity training who never stop to consider how sensitive our backs feels after moving them around in bed and doctors who think it is normal to try and keep 95 year old demented people alive at any cost and an administration who thinks working short staffed is the ok and the list goes on. I must be a glutton for punishment because I keep showing up for more...

Wednesday, September 17, 2008

Funny Lookin'- Just Like Her Daddy

We took Anna to her GI appointment on Friday and all went quite well. We loved the doctor, Dr. Ogunmola. He was kind and quite knowledgeable and explained things very well. He really feels Anna's FTT (failure to thrive) & ongoing stomach issues are due to a severe milk and soy protein allergy. Although the protein in Alimentum is quite broken down he feels it is still not broken down enough so he has put her on Elecare. He says that in terms of protein sizes- regular formula is like a basketball, Alimentum is like a tennis ball, and Elecare is like a golf ball. We had to mix it 1/2 and 1/2 with the Alimentum for a few days to get her to drink it but now she takes it like a champ. She should- i just picked some up from the pharmacy a little bit ago and it was $47.09/can. We use about 1 can every 4 days. I looked on eBay and found some cheaper. I think I'll get it there next time and I am also appealing our insurance company to pay for it. I am not holding my breath but maybe they will help. Her stomach does already seem to be better so I guess it is worth whatever it costs. The weekend pretty much kept us in the house due to Ike. We didn't get any bad weather but a good amount of rain. I am thankful it was only rain and I am thankful because we really needed the rain. We cleaned house all day including ceiling fans, taking down mini blinds, baseboards, etc. It is sad that it took a hurricane for us to get the deep cleaning done. Then, we kept our niece and nephew and some of their friends that night. I don't know why they like to stay here with us so much but hey, whatever. Kenneth was on duty Sunday and the girls and I didn't do much. Monday was Anna's genetics appointment and it went quite well. I had no idea what to expect- it isn't like there are tons of people walking around who have visited the genetics clinic to prepare us for it. Anyway, Dr. Drummond-Borg was her name. She was a sweet little older lady with a cute British accent. She is amazed by Anna's height but feels that she is just a normal kid with CP. She does think Anna's head is small but she measured Kenneth's head and said it is on the small side as well and that is where she likely gets it. She mentioned a couple of syndromes but said they are mostly unlikely and that she really just thinks we have a little girl who looks like her daddy and is going to be very tall and very skinny. What a relief!! I have waited so long for someone to tell me my little girl will be okay and I finally heard it. She definitely agrees with the CP diagnosis but says she really feels her left arm will be all that is affected and that in time Anna will learn to overcome that as well. She finds it very curios that Anna's brain cyst is on the right side and her problems are on the left side since the right brain controls the left side. She really feels this is worth checking up on, and that as Anna grows and her brain gets bigger that we will likely be able to see the area of her brain that suffered the insult as a result of placental insufficiency. She said sometimes in tiny babies it is just hard to see but as they grow and the brain grows it becomes easier to visualize the damage. Her comment after that was something to the affect of, "You don't plan on having anymore children, do you?" That door just got slammed shut again. Oh well, I guess I should be thankful I have 2 beautiful girls, I know plenty of women who would give anything just for one child. God has a plan for us and I guess if he wants us to have more than 2 he will make it happen and if 2 is his plan then 2 it will be. I am working a lot this week but am fortunate today to get a day to myself. I took a 2 1/2 hour nap and am feeling so refreshed. I think it's about time to get dressed and go get a pedicure or something. Carly's newest thing goes something like this:

Me: "How was school today? Did you get a happy face or sad face on your stamp page?"

Carly: "I got a happy face. How bout' them apples?"

She really cracks me up. Last night I hear her yelling out from her room, "Maaaamaaaaa, maaaamaaaaaa." I am praying at this point she doesn't wake Anna up and I get up to see what is the matter. "Carly, what is wrong?" I asked her. "Mama, I'm weeeetttttt!!!!" I guess she had one of those dreams- you know the ones- and she peed the bed. I cleaned her up and put her in our bed. I DO NOT do laundry at 2 am. I think that is the first time she has done that in like 6 months, it was actually kind of funny...

Saturday, September 13, 2008





















Other than Dr. Miller (the first neuro who we will never get back
but who I miss sooo much) we met the best Dr. at Anna's GI appointment on
friday. His name is Dr. Ogunmolu. He was 1.) on time, 2.)so very
kind, 3.)Anna smiled and laughed at him, 4.)took us very seriously, 5.)has a
plan of action described in detail, and 5.)explained things so well that I
didn't even have any questions to ask. I highly reccomend him and I do
not
highly reccomend too many people. He truly believes Anna's
failure
to
thrive is all related tot he milk/soy protein
allergy.
He thinks
the
protein in the Alimentum is still
not
broken down enough
and has
switched her to
Elecare. He
explained that the protein
molecules in
regular formula are
like
a
basketball and in Alimentum are
like a softball
and in Elecare are
like
a
golfball. He
really
thinks with the Elecare
she
will
thrive. There
are only 2 problems
with the Elecare.
First, she doesn't care
too much for
the taste
but she is
adjusting.
It does
come
in Vanilla so if she won't
tolerate
the
unflavored we
will
switch. The second problem is that
it
is
$40 a
can.
She
generally takes about 2 cans/week.
Regualr
formula is
about $12/can
for those of you not familiar with
formula
prices. You
have to
order it from a pharmacy
and
it
only comes in a case of 6 cans
so
we must
spend
about
$240
everytime we order. If I see improvements
I
will
petition our
insurance to pay for it eventhough it is
listed
as
an
exclusion on our
policy.


Thursday, September 11, 2008

I Hate You

Imagine this- new doctor tomorrow and I am nervous as hell and nauseated along with that. You probably wonder if these appointments make me so sick then why do I keep making more and going to more. Well, it's actually simple. I love my child more than anything in the world and I want the best for her and I am so afraid that something is going to be missed and I would never forgive myself if something was missed because I didn't take care of it as I should. I failed her once and I will not fail her again. Today was one of those days when I think about how much I would like to have just one more baby maybe, but I know it just isn't in the cards for me and it breaks my heart. I wanted that decision to be mine. I am so pissed that it was taken out of my hands. I hate preeclampsia. I hate that it robbed me of a normal pregnancy and I hate that it has likely robbed my baby of so much also. I hate that it has robbed me of the chance to try again. It has been awhile since I have broken down but tonight the tears just won't stop. I am so happy for people who can have healthy pregnancies, I really am. I wouldn't wish this on anybody but I am so jealous of what it must be like. I still wonder if I could have done things differently if it would have made any difference. If I had stopped my Effexor or not needed so much Zofran or slept more or corrected my anemia sooner or just anything, would it have mattered? I'll never know...

Wednesday, September 10, 2008

Not Exactly The Same Conversation

First off, people who send mixed signals get on my nerves. Enough about that. I did not manage to get a wink of sleep on Monday and Anna was up most of the night Monday night so needless to say I was draggin yesterday. Kenneth and I were actually off together though so we went out to lunch and then blew a few bucks at the casino. I'm glad I don't really enjoy the casino so much, it could be dangerous. Carly had ballet and tap and that went well also. Kathy, our OT, came yesterday to see Anna. It seems the message I got from Kenneth regarding the last appointment was not exactly how things went. Kenneth told me that Anna was "doing great and all caught up but they would keep her on service anyway because it would be easier to keep us on than have to sign us up again later if we needed them again." Denial, it must be a nice place. Kathy says she is very pleased with Anna's progress however she feels there are likely some cognitive delays. She also says that although Anna has done great at "catch-up" that her movements are still very precise and calculated, not fluid as they should be. She feels this is a motor planning issue. She brought some sheets for 9 month old skills and Anna is doing great for the most part but we are still lacking in a few areas. I am so sick of Dr. appointments as I think I had probably posted somewhere earlier. BUT... the OT suggested I really need to talk further to the neuro about Anna's cyst in her brain. So I called to make an appointment and as my luck would have it, Dr. Hernandez is no longer coming to the Denton clinic so we have to change neuros again. This time we will be seeing Dr. Marks but I am ok with it because he is the head of the "movement disorders" part of the neuro group which really fits our problem. Kathy also wanted us to see another GI so we have an appointment on this Friday at the Denton clinic. She is still concerned about the weight issue and truly believes nutrition is key to overcoming lots of Anna's problems. Anyway, enough about all of that. On a funnier note, I was taking Carly to school this morning and decided to go to Sonic and get a drink first since I had to head to work right after dropping her off. So we pull into Sonic and I get my drink and Carly tells me, "Mommy, one time when Daddy and I came here, 2 girls brought out our food. They thought daddy was cute. They asked him to come home with them." I chuckled and went on. I have given Kenneth hell about it and he says he will have to go find these girls who think he's a hottie. My free time is over, off to do more work it is...

Monday, September 8, 2008

New Kicks


At the request of Anna's occupational therapist, she got her first pair of real shoes. We are trying to avoid orthotic foot/ankle devices. I think she looks so cute and grown up. She is so proud of them.

The Wall Around Me




I had such grand plans to sleep in a little today but apparently the kids didn't get the memo. Carly was up bright and smiley at 6 and ready to watch Blue's Clues. Thanks Steve!! Anyway, her baby sister was up minutes later and I soon realized that the best laid plans are...just that- plans, they rarely work out. So we were up and going quite early and that made it oh so necessary to make a pit stop at McDonald's on the way to take Carly to school. Carly just doesn't understand why she can't have a Happy Meal breakfast. I finally convinced her that she wouldn't like a Star Wars toy anyway. So then I thought Anna and I would come home and cuddle up and take a little nap- yeah right. She has other plans for us. I worked 60 hours in the last week and I am so tired but alas, I will go on. I pray this afternoon holds at least a few minutes of shut eye. Kenneth is on duty so it's just me and the girls. Carly always says, "Mom, is it just girls day today?" So here I sit blogging and eating sweet tarts as if my butt isn't already big enough. The weekend flew by. I worked both days and neither day was much fun. We had a lot of patients die, some that were expected and some very unexpected. I have learned to put a wall between myself and most of my patients so that I care a lot but not so much that it hurts when something bad happens to them. This weekend I lost one of those patients who got to me and I never was able to build that wall around myself. She was such a sweet lady and had such a wonderful family. She had suffered for months and her family decided to take her off the vent and let her go. We disconnected her Saturday evening and when I went back Sunday morning she was still there. Her b/p was crap and she was barely breathing but because she had a pacemaker she just kept on going. Her family finally requested that the pacemaker be turned off as well. It was turned off and she did immediately thereafter- her heart did not beat one more time after that. It was somewhat of an ethical dilemma and in some ways I felt like we were playing God but I guess when it comes right down to it turning a pacemaker off is no different than turning a vent off and I am almost never opposed to shutting a vent off. I know eventually she would have become acidotic enough that the pacemaker would quit capturing and she would have died anyway but it just really seemed to her family, and to me, that she had suffered long enough. It's so funny sometimes how death brings people together. The patient had 2 sons who had not spoken much in years and now they are back together. I hope their momma is proud as she looks down on them. When I look back on my career there are a few cases that really stick out in my mind and although sometimes they make me sad I think they remind me why I do what I do. I digress. The girls are doing good. That picture is when I made brownies with Carly and Kenzie. Anna is so proud of herself- she is just crawling everywhere and just smiles as she goes as if to say, "I knew I could do it." Sooner Start will be here tomorrow and I am not sure what they will do with her. I have been at work during the past couple of sessions so it will be good to see Kathy again. We will still be going to see the geneticist next Monday at the request of the neurologist. I am a bit nervous but I know everything is going to be ok. There is just something unnerving about new doctors. About 3-4 days before each new specialist visit I get nauseous and sad and start not doing well. I have got to overcome that although i think we are about done with all this specialist stuff. I am going to have lunch with my mom in a bit so I guess I better go get myself into the shower, she'll appreciate that...

Thursday, September 4, 2008

The Tail Is Wagging The Dog



First off, my brother in law is a surgeon in the Army currently serving in Afghanistan. I wanted to show off a few pictures of him- give these guys props- it looks pretty nasty over there!! Now, on to my issues: Daddy's girl, yep, that's what she is. Carly has got her daddy wrapped around her little finger. She is only 4, I fear this may only get worse. We have been having issues with her not wanting to go to school on the days that i work and Kenneth is supposed to take her to school. She gets out of bed, asks to stay home, he says no, she throws a fit, he gives in, she stays home and gets what she wants. He can't seem to understand why she doesn't throw these fits for me, only for him. I keep explaining that it is because it works for her and she gets her way. So he has agreed to not give in anymore- whatever. I was at work today and called about 12:00 to check in on everybody and I hear Kenneth say "Carly..." and realize she is not at school- again. (When I say school I am talking pre-K here so it's not like a truancy issue or anything) I ask him why she is at home and he says she threw a huge fit and he tried everything to get her under control and to get her dressed for school and she just wouldn't cooperate. He finally gave in and told her she could stay home but she couldn't watch t.v., couldn't play with her toys, and couldn't play with Mackenzie. Great punishment Dad!! She still got to stay home which is exactly what she wanted. So- the tail continues to wag the dog and I am afraid his will not change anytime soon. She is such a good kid bu she plays her daddy like a fiddle!! Anna is doing great. She started saying "mama" and I couldn't be more proud. She is sleeping better and we are so happy about that. Work has been crazy busy. Today we had a lady code because her lung is hemorrhaging so her trach got a blood clot in it and it occluded her airway. We took her off the vent and tried to bag her but no luck. As we started to do chest compressions the clot flew out of her trach and landed at the foot of her bed. I have never seen such a huge group of people part like the Red Sea before- that clot had some velocity!! Lucky for her (or maybe not so lucky for her)she lived. I think her family has made her a DNR now. JCAHO is at our hospital doing their survey this week so all of the suits are walking around with their heads up their butts. I am pretty sure we will invest in glass belly buttons for them, then maybe they will at least be able to see out. I am so glad to be off tomorrow and then I work Saturday and Sunday. Saturday is an extra shift I picked up and I told them I couldn't be there until 8:30 so at least I'll get a little sleep. I love these extra shifts where I call the shots and tell them when I'll come in. Well, not much else going on here. Things are pretty boring and I couldn't be happier. I am meeting Joanne at Deiter's for lunch tomorrow for BBQ and beer, mmmmm, can't wait....

Monday, September 1, 2008

Freak Week

It never ceases to amaze me the kind of freaks that come out of the woodwork sometimes. This past week at work was full of freaks- not so much patients but family members. I can't even begin to describe these people but they are the ones you generally see on Jerry Springer- and they were all hanging out in the ICU at Presby Denton this week. Some of the patients were real winners too. I knew today would probably not be too great when one of my patients was dead by 7 AM. So I got another and one of them turned out to have lice but didn't really feel it was prudent to share that information with me. What the hell? How do you have lice and a.) not know it and/or b.) not tell the people taking care of you. And yes, these are the people working at your local fast food restaurants. Needless to say I all but screamed as I saw this louse crawl up the patient's arm and I immediately got clean scrubs from OR and came straight home from work to take a decontamination shower. As if this wasn't bad enough we had a guy in DTs who decided that after we got him off of the bedside commode he would fall face first into the bed with has butt shining up in the air for all to see and then he would pass gas and shart all over himself. Seriously- did I go to school for this? Then he proceeds to tell us, "Man, I don't know how much they pay you but it is not enough." I'm thinking if you are cognizant enough to worry about my pay shouldn't you be somewhat able to control your bowels or at least excuse yourself after you crap all over your nurses? Nope, he proceeds to gripe at us because we didn't get him back into bed the way he wanted. He is by far one of the finer male specimens in this society. If people want to kill themselves I can handle it but I am so sick of getting people through their withdrawal so they can go out and do it over again and again and again. For some dumb reason I picked up extra shifts this week. I suppose I am a glutton for punishment. Wanna join me?

Thursday, August 28, 2008

Survey Says...

So we finally got all of Anna's test results back. They have come in at different times but today I got the last of them so I wanted to post them all at once instead of one by one. The EEG was normal, no evidence of seizures. The MRI showed a cyst in her right temporal lobe. The cyst is most likely nothing to worry about. They will do another MRI in 6 months to follow up. Best case scenario (which we hope and know will be true) is that the cyst will either stay the same size or shrink and disappear. Worst case scenario, which I will not allow to happen (as if I have control) will be shunt placement if the cyst grows and causes an increase in intracranial pressure. Her genetic test results came back today. They are all - get this - NORMAL!! It has been a long time since anyone has referred to Anna as "normal." I am so excited because this means what we see is what we get. As good or bad as it is now is as bad as it will ever be. Anna has made such progress over the past few months and so I am now able to feel safe letting myself believe that my child will be o.k. She will never be a star athlete but who cares. I am thankful she is back to just being Anna instead of some mysterious diagnosis. It is so funny how I can be undone by the things I am most unsure of. I can deal with anything that comes my way but the fear of the unknown is so hard for me to deal with. I guess this may mean I need to work on one certain word a bit, that word is faith. I need to be better at believing that God hears my prayers and answers them even when I am uncertain of it. So I am happy and smiling and carefree for today, and hopefully for many days to come...

Monday, August 18, 2008

Just For Fun


This sign was at the beach and I found it quite funny.

Sunday, August 17, 2008

Bad Boys, Bad Boys, Whatcha Gonna Do...



I finally have a few minutes to post. I swear the days are getting shorter, I seem to have less and less time to do what I need and want to do. So Anna and I headed off to Cook's on Thursday morning. She slept the whole way there and so I thought it was going to be a good day. Um- not so much. We got there and got registered and to our room relatively easily. The staff was all quite friendly and the accommodations could not have been better. I have no complaints as far as that goes. My dear friend Amy came to visit and brought me lunch and it was so good to see her! Anyway, about 1:00 they came and got us and took us to get Anna wired up for her EEG. This was the most horrifying experience I have had with Anna yet to date and I hope to never repeat it. I had to literally hold her down for 45 minutes with her thrashing and kicking and screaming and crying while they mark her head and then apply glue and metal electrodes and finish it off by drying the glue with an air gun. It was horrible. Then they attach the 25 wires to a box which we had to carry everywhere with us. I use the term "everywhere" quite loosely because we could not leave our room. There was a ceiling mounted camera in the room which followed us around the room to record Anna's behavior so if she had abnormal activity in the brain waves they could see how she was acting at the time. Needless to say 24 hours of that was enough for us. We did not sleep much at all. I know some kids have to stay 2 or 3 days- I can't even imagine. I basically held her most of the time because she couldn't crawl around or anything. We watched more Baby Einstein than I ever care to watch again. That hell finally finished and then they had to rip the glued on electrodes off of her head. That was great fun also. It is days later and we are still picking glue out of what little hair she has. Then it was time for the MRI. They tried giving her sedation rectally but it was ineffective on her and so she ended up getting general anesthesia. I watch adults get intubated day after day at work but it is such a different ballgame when it is your own baby. So they intubated her, I gave her a kiss and told her I loved her and then I had to leave her. I went back to our room and waited. She finally came back about 2 1/2 hours later. They brought her up in a wagon and she looked so cute lying there in the wagon all cuddled up with a pillow- she was still quite sleepy. Then we met with the dietitian who changed our regimen up again in hopes for more weight gain as Anna is still classified as failure to thrive. We are back to 1/2 Alimentum & 1/2 Goodstart with the addition of Duocal which will boost the calories more than the Polycose did. It is also more concentrated so it is easier to mix. The dietitian was very nice. She is actually friends with my friend Kathleen so I feel I can really trust her. Oh, I forgot- on the first day when the nurse practitioner for the neurologist came to see Anna she said Anna has 2 horrible ear infections so it is back to another round of antibiotics. That should be great since we are already battling thrush. I swear it just never ends. Anyway, we finally got out of there about 5 PM on Friday and headed home right in time for 5 o' clock Ft Worth traffic. I was up most of the night Friday night with Anna and then worked all day yesterday. Kenneth let me sleep in today and it was so nice, and so needed. I feel human again. I am supposed to call on Thursday to get the results of the EEG & MRI and I hope the FISH labs are back by then also. Anna has been a trooper once again. She is crawling better and better each day. Carly has been great also. She cracked me up last weekend. We went to the grocery store and were leaving when I got pulled over for speeding (imagine that). I begin to pull of the road and Carly starts screaming at the top of her lungs. She screams over and over, "I don't want you to get a ticket. I don't want you to go to jail. I don't want you to get a ticket. I don't want you to go to jail..." I roll my window down as the officer approaches my car. Carly is still screaming and as she sees the officer she raises it a few decibels. He is looking at us like "What the hell?" I said, "Um, she doesn't really like police officers so much." I;m sure he is thinking at this point- what have you done that she is so afraid and that she thinks you will go to jail. I explained that she is afraid of her own shadow. I guess she has seen too many episodes of Cops or something. So she continues screaming and the officer looks at my license and insurance and asks me to please slow down and lets us go. I am sure he was like- I'm not going to give this lady a ticket, I'll have to listen to that kid scream even louder. Thanks officer!!! Well, although I did not teach Carly this behavior I'm thinking it might be reward worthy- maybe it will work the next time I get pulled over, too. (If there is a next time, wink, wink) Kenneth went back on duty Friday. The ortho said his finger is still broken but released him anyway. He said it could take a long time to heal. He was glad to go back and I am glad to have our crazy routine back. It was weird having him home all of the time. So here we are on Sunday and finally relaxing. I am off until Tuesday and plan on chillin' until then...

Saturday, August 9, 2008

To Florida and Back




We are back from our Florida trip. We went with my parents, my sister and her kids, and my aunt to Destin, Fl. It was fun but I am glad to be back home. There is just nothing that compares to my own bed. The kids were fairly well behaved and I think they had a great time also. Carly did not like the ocean. She was terrified although she did get in the water with her Nana one time. The kid is so anxious about everything. There were a bunch of jellyfish though so I guess maybe she was the smartest one of all of us. She did spend a great deal of time in the pool though and has learned to swim quite well with floaties which is a huge thing for her. Just a month or 2 ago she was terrified to go near a pool and now she is swimming and wanting to take swimming lessons. I am proud of her. Our trip had a rocky start when we got the airport early Monday morning and realized the diaper bag was at home on the kitchen counter. I had luckily packed duplicates of most things in the bag except for Anna's medicine. Fortunately my sister was able to get her some more medicine and so that worked itself out. We mostly just chilled out by the pool. Anna did a little swimming, too. She also prefers the pool over the ocean as she does not yet understand not to rub the sand and salt water in her eyes. She is crawling all over the place now and wants so badly to be one of the big kids. GahGoo (Carly's rabbit who is nearly as old as she is and is nasty looking and falling apart but who she loves more than life itself) fell 15 stories from our balcony to the balcony of a 3rd floor condo. Carly was out on the balcony with my mom when all of the sudden I heard this horrific scream followed by "GahGoo fell and I can't go on without him!!!" So we tracked him to the 3rd floor condo and luckily those nice folks were there and retrieved GahGoo from the balcony. GahGoo was luckily still alive and intact (as much as he ever is) and is banned from balconies from here on out. I was putting sunscreen on one day (lots of it) and Carly asked why she doesn't need as much sunscreen as I do. I told her that I burn but she just turns brown. She later tells my sister that she doesn't need much sunscreen because she doesn't turn red, she "just turns black." One night at dinner our waitress said she was going to the bar to get Kenneth's beer and she would be right back. Carly asked "Mommy, why is she going to the barn?" We had our usual eating issues with her but to my total amazement she ate calamari. For those of you who are not familiar with calamari- it is squid. Yep, my chicken nugget only eater ate squid and wanted more when it was all gone. I could not believe she stepped out of her box. We also went on a dolphin cruise and saw a few dolphins swimming alongside ships. They are such beautiful creatures and seem so carefree. Sometimes I think I wouldn't mind being a dolphin for a day or so. Anna was so happy to be home yesterday. She ate like champ and slept all night- neither of which did she do on the trip. She is teething and the poor girl looks like she will probably get at least 4 teeth all at the same time. Her EEG and MRI will be on Thursday and Friday- I hope it all goes well. Kenneth goes back to the ortho on Tuesday and hopefully he will be released then to go back to work. He is going nuts and so am I. Anyway, it is back to our normal routine or lack thereof, what fun...

Saturday, August 2, 2008

Party Girl

Not much has happened here since the last post. I welcome the boring times, I seldom have those in my life. I have been working quite a bit and Kenneth is still off with his injury. His next appointment is on the 12th and hopefully he will be back on shift on the 15th. He is going crazy being off for so long and is in turn making me crazy. He paces around the house a lot- as if there isn't already enough constant motion in this place. I feel sorry for him though, he feels fine but just can't do anything. Oh well, this to shall pass. We leave soon for a week in Florida and I can't wait. Carly has already packed her bags. Keep in mind we are going for about a week and she packed one backpack with 1 pair of pants, 1 shirt, 1 jacket, and her ballet clothes. She is funny- I told her I would help her pack tomorrow but she sincerely believes she has packed enough for the trip. I guess she forgot we are going to the beach and she might need a bathing suit and a few other things. I applaud her efforts to try and do things herself though. She has finally conquered her fear of the swimming pool. She has been so afraid of drowning all summer that she has not been able to enjoy swimming. We put Anna in the pool and Carly then decided she did not want to be shown up by an 8 month old so she quickly got in. Then we had to drag her out because it was so much fun for her. Anna is doing well also. She is starting to crawl. She looks drunk but we are happy that she is trying, regardless of how she looks. She is so proud of herself and mostly crawls to get to the cat. Yes, I gave in. I let one cat back in the house. I just keep telling myself it is good therapy for Anna because I had sworn I would never have another cat in the house. Never say never- you'll eat your words and they taste like crap!! Anna's video EEG, MRI, and nutrition consult will be on August 14-15th. we have to stay overnight at Cook's. Anna & I will likely go crazy from being cooped up together for 24 hours in one room. It must be done though so we will survive it. Anna has decided it is fun to get up and play all night and not allow anyone to sleep. This coupled with her 2 15 minute naps a day = complete exhaustion for Kenneth and I. I must go to bed before the party starts again, I wouldn't want to sleep through it...

Monday, July 28, 2008

New Neuro

I took Anna to see Dr. Klein this morning because she has thrush and I assume this in combination with teething is why she has been rejecting the bottle and anything the least bit acidic over the past few days. Her sleep habits have also been quite screwed up and we are all so exhausted. Then it was off to see Dr. Hernandez, our new neurologist. He was nice and seemed very knowledgeable. I still miss Dr. Miller and he will never be able to be replaced but he is not coming back so I must move on. Dr. H reviewed Anna's records, tested her reflexes, played with her, and talked to us quite a bit. He looked at Anna's MRI and stated he though there was definitely something abnormal with the white matter in her brain. He says he does not like the term "cerebral palsy" and prefers to call it "static encephalopathy." Basically- that is brain damage that is not changing and of unknown cause. He also seems to think there is more going on though. On a happy note, he was able to get the results of the chromosome testing back and it was normal. I was happy but then he told us that test doesn't really tell much and they had to actually do the FISH test for micro deletions to be able to tell anything. He said that test might be back by the time we see genetics. He also ordered some other tests of which I have no idea how to pronounce or what their significance is. The plan now is to have Anna spend a day at Cook's in Ft Worth and have an all day EEG to look for seizures- she seems to be having some where she just stares off into space and becomes unresponsive- not the convulsion kind, they call them absence seizures. Anyway, she will have the EEG and a repeat MRI and we will meet with a nutritionist all during that day at Cook's. Dr. H was quite concerned with Anna's size and her nutrition or lack thereof. I was so glad to finally see somebody sharing my concern. I told him she is chunky now compared to before- he seemed shocked that we had not seen a nutritionist before now. So basically we are no further than we were except one test is ok but then we know that test basically doesn't mean a whole lot. I was telling Kenneth that I just want to say "screw it" sometimes and quit all of this doctor visit after doctor visit crap but then I know we have to keep searching because if we give up we may end up not finding something that is fixable and then Anna will have to suffer the consequences. Unfortunately, I am waiting for a Dr. to tell us Anna is fine and there is nothing wrong and all of this was just nonsense. That will never happen. I know it is cliche but this really feels like a bad nightmare I cannot wake up from. I want to get away from it all but I can't. No matter where I am or where I go or if it is morning or if it is night, this is always with me and causing pain in my heart because my baby is sick and I can't fix her. I'll try to update more tomorrow but I am so tired my eyes are crossing and Anna is actually asleep and Carly says she's tired- I must take advantage of this...