Friday, December 26, 2008
Tuesday, December 9, 2008
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
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
Tuesday, November 25, 2008
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
Tuesday, November 18, 2008
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!!!
Thursday, November 13, 2008
Monday, November 10, 2008
Thursday, November 6, 2008
Thank you so much for hearing my cries and answering my prayers.
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
Sunday, November 2, 2008
Monday, October 27, 2008
Friday, October 24, 2008
Wednesday, October 22, 2008
Sunday, October 19, 2008
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
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 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
Sunday, September 28, 2008
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
Wednesday, September 17, 2008
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
highly reccomend too many people. He truly believes Anna's
thrive is all related tot he milk/soy protein
protein in the Alimentum is still
broken down enough
switched her to
explained that the protein
regular formula are
basketball and in Alimentum are
like a softball
and in Elecare are
thinks with the Elecare
are only 2 problems
with the Elecare.
First, she doesn't care
too much for
but she is
in Vanilla so if she won't
switch. The second problem is that
generally takes about 2 cans/week.
for those of you not familiar with
order it from a pharmacy
only comes in a case of 6 cans
everytime we order. If I see improvements
insurance to pay for it eventhough it is
exclusion on our
Thursday, September 11, 2008
Wednesday, September 10, 2008
Monday, September 8, 2008
Thursday, September 4, 2008
Monday, September 1, 2008
Thursday, August 28, 2008
Monday, August 18, 2008
Sunday, August 17, 2008
Saturday, August 9, 2008
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...