A New Twist On An Old Story

The girls with their "Pops"

There's nothing like sisterly love!!

The 2 Princesses

A treat from the Easter Bunny

The Original Princess

Happy Easter! I hope you had a great one and took some time to reflect on the fact that Jesus is risen and is truly the reason we celebrate Easter. The bunnies and chocolate are only a bonus! I just wanted to take a brief moment to fill you in a Bible story...from Carly's point of view:
Carly came home from school and was telling me how she had learned that day about how Jesus made a lame man walk and a blind man see. She explained in very intricate detail of how they cut a hole in the roof of the place where Jesus was staying and lowered the lame man down and Jesus prayed with him and healed him. I then asked her how he was able to make the blind man see and she quickly answered, "I think Jesus got him some glasses or something."

Where Do We Go From Here?

The DAFO (not the greatest pictures, I know)

Here is the evaluation:

Patient Name	Anna Watson
DX	764.0 IUGR, 343.9 Cerebral Palsy NOS, 348.0 Cerebral cyst, 160.10 Auditory tubes

Subjective	Anna Watson, DOB 12/03/2007, was evaluated on 04/01/2009 for occupational therapy services. Anna’s prior medical history, as reported by mom, includes intrauterine growth restriction, cerebral palsy/static encephalopathy, bilateral Eustachian tubes in Nov of 2008, speech delay and history of chronic ear infections, immature mylenation and small cyst after cerebral MRI. Mom reports that Anna does not appear to feel pain, has irregular sleep patterns, appear clumsy and uncoordinated and is on a modified diet. Anna has had Early Intervention therapy, however, parents feel that more can be done for Anna.
Objective	The following assessments were completed with Anna: The Peabody Developmental Motor Scales 2nd edition Anna’s age is 15 months. Her record of scores is: Reflexes Raw Score 11 Age Equivalence 7 months Stationary Raw Score 37 Age Equivalence 14 months Percentile 50 Locomotion Raw Score 78 Age Equivalence 15 months Percentile 50 Object Manipulation Raw Score 5 Age Equivalence 13 months Percentile 25 Grasping Raw Score 40 Age Equivalence 14 months Percentile 37 Visual- Motor Integration Raw Score 64 Age Equivalence 12 months Percentile 16 Gross Motor Quotient 96 Percentile 39 Fine Motor Quotient 88 Percentile 21 Total Motor Quotient 92 Percentile 30 The Infant and Toddler Sensory Profile was completed by Mom. Anna scores Definite Difference More that Others for Low Registration Quadrant and Probable Difference More that Others for Sensation Avoiding and Low Threshold. Anna scores Definite Difference More than Others for Sensory Processing Section of Vestibular Processing and Probable Difference More than Others for Auditory Processing.
Assessment	Anna is a pleasant 15 month old girl. She was a bit apprehensive but warmed up quickly and was very clear in what she was willing to participate in. She does not speak audibly. She grunted, pointed and garbled to let her needs and wants know. She demonstrated residual reflexes which are typically integrated by 6 months of age, specifically asymmetrical tonic neck reflex and she did not display protective extension backwards or sidewards. When tracking an item, Anna follows with her entire head and does not track sole with her eyes. Because of her decrease functional vision and lack of protective reactions, she is at a safety risk for bumping and falling. Anna presents with decreased visual motor integration skills (VMI) and auditory and vestibular processing issues. Her balance deficit was very apparent after completing a forward swing motion in that she walked 3 steps and fell down and required min assist to stand. Anna does not demonstrate a significant delay in any one area however when the VMI, auditory and vestibular differences are looked at as a group in functional skills the slight gap difference will only become wider if not addressed.
Plan	Anna would benefit from occupational therapy to address her balance, visual motor integration and her hypertonia so that Anna can complete age appropriate functional tasks. It is recommended that Anna participate in our intensive treatment of 12 consecutive days in our clinic followed by an 18 day home program. At the completion of the home program she will return for a follow up, it will be determined at that time further course of treatment.

Kenneth and I are trying to decide whether to do the intensive program or not. I have many reasons for and against it. We see Neuro on May 5 and I am hoping his input will help us decide one way or the other. She didn't do too badly but it is sad to not see her above the 50th percentile in anything. She is so bright and I fear that may someday be overshadowed by her body's inability to do some things. If I ever hear anyone refer to her as retarded I will lose my mind. She is smart and funny and I do not want her physical limitations to become what people see in her. I love her because she is Anna. I am having a rough time with all of this again. I am torn about what to do. I am so afraid I will miss something.

A Kick In The Gut

I don't know if I am coming out of some denial that I thought I was over or if this is just another round of reality slapping me in the face but either way I feel like I have been kicked in the gut. As I had previously posted Anna's Early Intervention occupational therapist has been so pleased with Anna's progress. They are going to reevaluate her next month and they felt like she would not even need their services anymore except for possibly speech. Kenneth and I were overjoyed. We felt like we had somehow escaped most of the ill effects of CP and that it looked like our child was going to be free of the signs of CP by the age of 2. We knew the condition would never go away but we thought her case was so light that it would be undetected by most. However, over the past few months I had been noticing that Anna's left foot was turning in- not like a pigeon toe but more like a club foot. The turning if her foot was also causing her leg to sort of bow. Not like a bow legged person- this was all just from the knee down. I had just watched it and thought I was probably just the mother watching too closely and I let it go. I said something to my MIL about it and she actually said she had noticed it to but was not sure how to approach me about it. I decided that it probably should be evaluated so after some searching I found a pediatric OT in Denton at a place called Hope Pediatric Therapy. I made a consultation appointment and took Anna on Wednesday. It was such a neat place and I felt very comfortable there. Anna cried and held on to me when we got there and then at the end she cried because she had so much fun she didn't want to leave. The OT's name is Ana and she was so very kind and caring. She grew up with a sister who had CP so she really understands what we are going through on a lot of levels. Her opinion of Anna's needs was so different than that of the state paid therapist. She feels like Anna really needs intensive therapy for all that is going on with her. She said that if we don't begin to work on things now they may effect the way she learns to read, write ,and eventually even drive. She said Anna has something called an Asymmetrical Tonic Neck Reflex among other reflexes that should be gone by now but are not. She noted problems with Anna's high tone (stiffness) throughout her body. She said we need to take her to an orthopedist about her feet and legs. She was appalled that EI was going to discharge us in light of all she saw that needs work. She is happy to help Anna or to make suggestions if we chose to go somewhere else. We will go back to her on Thursday for Anna's formal evaluation and set up her therapy then. I am upset on so many levels. First off that I ignored my instincts- I should know better by now. Second, that it feels a bit like we are back at square one. Third, that I feel somewhat betrayed by EI who was supposed to help us and keep us going in the right direction. Don't get me wrong, they have helped a lot and I am still grateful for that but I feel like they have really led us astray. What if I was just one of those people who blindly trusted and didn't question- how high of a price would Anna have to pay later in life for that? I should have known better than to trust a state run agency in the first place. And last, I am sad that the "dream" Kenneth and I shared of this "healing" of Anna's CP has been shattered. I want to scream and cry all over again but I know it will not help. My distrust of the medical community continues to grow and I am becoming at times ashamed to be a part of it. Anna's DAFO arrived today. She has the Jumpstart Kangaroo in pink. She wore it for about 1/2 an hour today and did good with it. She did seem to walk better and fall down less. I only ordered the left one to start with but after seeing the improvement I need to order the right one also. I will try to get some pictures tomorrow of her with it on so you can see. Well, I am all typed out and I need to go to bed because she is still getting up 2-3 times a night and tonight is my night to get up with her. Goodnight all...

The Devil Inside

For some this may all be TMI so if you are one of those who think girlee stuff is TMI then stop reading here...

I had read many many hours of internet junk about the Mirena before I had in put in. I read tons of postings from women who swore it had ruined their lives and I thought wah, wah, wah- whatever!! I am generally a skeptic and firm believer that if you read about all of the side effects of medications you will inevitably get them. It is not that I do not advocate for people being informed about their medications but unless the side effect is something that is potentially life threatening I think sometimes it is best not to know about them. Then if you start to notice something weird when starting a new med you can check it out. This may seem backwards but I have met scores of people who are intolerant to side effects and seem to have every side effect listed. I really believe if they would not have know the side effects they might not have experienced them- it is a self fulfilling prophecy of sorts. That said... I went against my own advice and read about the Mirena. I read of many women who loathed it but I also read of many women who loved it. I had mine placed in January of last year. I did not even get it so much for the birth control but more for control of my ungodly heavy periods. I stayed anemic due to the heavy bleeding and could no longer tolerate it. The placement was easy and did not hurt much at all. I had a little cramping. Then the bleeding started and lasted for about 4-5 weeks. It was not heavy but it also never stopped. I then realized why it worked as birth control, always bleeding=no sex=no pregnancy. The bleeding finally slowed down and I was pleased. No more heavy periods and no more cramps. my mother and grandmother both had emergency hysterectomies for heavy bleeding and I really was excited to maybe stop the pattern. I continued to spot frequently for the first 6-7 months but it was nothing compared to what my periods had been so I did not mind. When I learned I have antiphospholipid syndrome I was again glad I had chosen the Mirena because this appears to be the only form of birth control that is safe given my tendency to clot. When Kenneth and I decided we might be ready to TTC again the Mirena was removed (and that is a whole other post). The removal was not painful and I again had a few cramps and that was it. I woke up the next day and I suddenly realized that all of those women who swore the Mirena had ruined their life had been correct. I had not noticed while the Mirena was in what it was doing to me but when it was out it all became painfully clear. I now have a sense of calm inside that I had not felt in so long. I am no longer yelling at my kids and losing patience with them at the drop of a hat and for no good reason. My acne is clearing up. I am smiling. I am not tired all of the time. My bones and joints are not aching. I thought all of these things were because of the stress of the past year and because of growing older, and I am sure that did play a little role, but overall I feel 10 years younger with that thing out. Don't get me wrong, I am not looking forward tot he heavy periods again but I am so glad to have my life back. Whether I get pregnant or whether I don't, I will never have another Mirena inserted. I have decided that mother nature did not intend for us to jack with our hormones in that way.

Random Ramblings

I should really consider going to bed soon but this peace and quiet is too good to pass up. Much has happened since my last post (not in order of importance might I add):

• Our beloved Max (the border collie) has disappeared with his girlfriend and so there is not even a dog howling. Ah, sweet peace! I love Max but he howls way to freakin much! His current love is a pit bull (sorry pit bull lovers but I am not a fan) so I guess the neighbors will soon have some ugly puppies! I am glad he took off with his girl though because for awhile she was hanging out here and I couldn't let my kids out to play. We have no fences and so dogs just wander out here, which is fine, except in the case of this particular dog who seems nice but freaks me out anyway. I have got to get Max fixed! Rocko is fixed and has stayed here but he is making me so sad- he looks so lonely without Max! Border Bulls or Pit Collies...
  
• Anna ran low grade temps for a week which I chose to ignore and call teething and then she started having temps of 103 for 3-4 days last weekend. I took her to the doctor Monday where I was told she likely had strep. She got antibiotics and then a day later broke out into a rash which I was told is likely from the amoxicillin in combination with mono. Strep, mono, strep and mono? All I know is that whatever the hell it is has her so cranky and not sleeping (I mean really not sleeping. I beg for the nights of only getting up twice now). WTH- how did the 15 month old get mono? She has been quarantined- I decided to at least be responsible about that part...
• Both of the girls got their ears pieced. I will post pictures later. They both look cute. I did not really want Anna's done but Kenneth did and I have to let him wear the pants around here every now and then. I usually make him check his balls at the door...
  
• Anna's left foot continues to get worse and now her leg is starting to bow a little. Her first DAFO (brace) is on order and should be here this week. I hope she tolerates it ok. At least it is pink...
• I have a zit the size of Texas on my jawline. I am really wondering how many times I can go through puberty. Seriously...
• The Mirena is out (I choose not to expand on this subject at this time)...
• I need a treatment program because I am hooked on Laffy Taffy- all except banana...

Goodnight!

I Have No Opinion

If you'll recall from a much earlier post I spoke of a Dr. Douche Bag (DB). Well, it seems Dr. DB has relatives, other doctors who for whatever reason are just complete and total incompetent asses. Please understand I have a great respect for the profession. My sister is a physician, and a fine one at that. Most doctors I come into contact with at work are fine doctors whom I would not hesitate to use for myself or my family, some are mediocre, and a few are just down right bad. There are two kinds of bad doctors- ones who are just dumb but they know it, and ones who are dumb and don't know it and are therefore dangerous. The first kind is not dangerous because he/she knows they are dumb and will consult smart doctors to take care of the things they do not understand. If they are a little smart but mostly dumb they will step back and not micromanage and let the smart guys run the show. The latter of the two kinds of dumb doctors is oh so dangerous. There is one in particular at the hospital where I work. I cannot mention his name for fear of retribution, but he is a royal jackass of the worst kind. Since the name Dr. DB has already been taken he receives the prestigious distinction of being Dr. Jackass (JA). It should suffice to say he is the only doctor I know who is routinely getting fired by families for his inability to care for people and inability to explain why he can't. So here is where I get to the meat of the issue: I am not allowed to have opinion of him if I want to have a job. WTH? If I tell a family that he is not a good doctor, if I admit his mistakes, if I verbalize any opinion of him, even when asked by a patient's family, I will lose my job. Why is it that I am legally required to turn in a nurse who makes medical mistakes but when we report a physicians medical mistakes to our administration we are told to basically turn our heads? Could it be that doctor is profitable for the hospital? It is really starting to make me question the job I do and the place I work. If I were the patient or if it were my family and I did not know better and somehow ended up with that doctor I would have the expectation that the hospital would not staff itself with doctors it knows are not competent to do the job. I am confronted frequently, more than I'd like to admit, by families wanting to know if it were my mother or my father would I switch doctors because they just don;t think he is doing a good job. I am not allowed to answer. I have bills to pay and kids to raise and I need a job but I also have a conscience and a soul that believes I am lying and doing something terribly wrong by not blowing the whistle and telling these people the truth. I believe that a lie of omission is just as bad as an outright lie. My prayer is that these people can see it in my eyes and that my eyes say what my mouth is not allowed to...

An Excerpt

I ran across this article at telegraph.co.uk about about Francesca Martinez, a comedian, and was really impressed with her point of view:

Last December, I guested on the topical news Radio 4 show Broadcasting House. One of the stories up for debate was David Cameron's Christmas card, which featured a photo of his family, including his young son Ivan, who had cerebral palsy. There was talk of the Tory leader using Ivan as a political tool to make him seem more caring and sympathetic.

I felt compelled to point out that Ivan was his son and therefore should be in a family photo. I imagined that had Mr Cameron left Ivan out of this family scene, he would have been chastised for keeping him invisible. He couldn't win. I thought the only fair question was whether any of his children should have appeared and if it was right of him to place them in the media spotlight. As usual, someone's disability had made them an issue first and a human being second.

That's the huge secret about disability – anyone with experience of it knows that a disabled person is just a person they love. A disability is like hair colour, eye colour, height or weight, just another arbitrary feature that those around you cease to focus on and which, ultimately, becomes normality.

I was born with mild cerebral palsy: according to my mother, if I was like a newborn foal. I like to think that this charming comparison is because of their wobbly legs and slim frame. I like to call myself… wobbly. I admit that the doctor did not use that word as he informed my parents of my condition when I was a somewhat floppy two-year-old in my mother's arms, but I can't stand those depressing terms that someone deemed appropriate to burden a human being with for the rest of their lives.

No wonder people are still so nervous about disability, and I can only conclude that names for them are hand-picked from a tombola of words most likely to induce fear and panic. Just stick your hand in and pull one out. Syndrome. Disorder. Cerebral. Palsy. Disease. Spina. Bifida. The rest is easy. Take two words, mix them together, apply to one human being and, hey presto, you've got a ready-made freak. Labels are powerful tools that shape attitudes and tell us much about how the things they are describing are viewed. I have spent my life trying to extricate myself from the label that was plastered all over me at birth.

My parents were young when I wobbled into their world, and full of love for their first child. After hospital negligence during my birth, I did not breathe for seven minutes, resulting in starvation of oxygen to the brain. After I was resuscitated, my mum said that the only sign that "something was up" was the repeated reflex tests that were done on me before I left.

When, aged two, I was finally diagnosed, my parents did not seem fazed by the revelation. Sometimes I've asked them if they were shocked or upset at my diagnosis, but all they say is: "You were Francesca and completely normal to us." This attitude shaped my childhood and allowed me to be happy and confident, totally unaware of difference.

At school, I was popular and naughty, a real tomboy who had her first boyfriend aged five. My brother came along and, to him, I really am normal, and when his friends asked him why his big sister "talked funny", he'd reply with a puzzled: "What do you mean?"

I love this!!!