I’m happy to say that we are finally home. Avery and I got home from Fargo yesterday
around 8:30pm. We had to make a pit-stop
to buy some new clothes to accommodate her fancy new tube and run to Wal-Mart
to get some food for Thanksgiving dinner.
Yesterday before we were discharged we finally did get an x-ray
and the results did show a fracture. The
radiologists report reads:
“ No definitive fracture is identified. On one of the images over the distal lateral
aspect of the radius, there is slight cortical bump which could represent a
mild buckle fracture, although this is subtle unless there is a clinical symptomatology
in this area to support this. Do not see
any other significant findings identified at this time.”
After discussing this with my OI group (several of which are very
well versed in OI due to them having it, their children having it and being
Doctors!) we’ve realized that the fracture likely occurred during the blood
draw or the IV placement (which was done under anesthesia). Avery was consolable after the blood draw,
although she was in pain, however after surgery she was completely inconsolable.
I’ve also learned an important OI lesson. Avery’s fractures are not my fault. They are not the Doctor’s fault. They are not the phlebotomists fault. They are not anyone’s fault. The fractures occur because Avery is
brittle. It’s just a part of her natural
life now. And as hard as it is to not
blame myself, I know I will, but I want to make sure that Avery lives a life
where every fracture doesn’t become a blaming game and making others feel
guilty about her condition.
On our way home from the hospital I called Avery’s case manager to
let her know about Avery’s fractured wrist.
I was praying that this would help solidify her clinical OI diagnosis,
and perhaps allow our family to be a family without the intrusive
investigation. However, after discussing
with her how the fracture occurred and where it was, it seemed to make no impact. I tried to discuss getting Avery set up to go
to Omaha to get PAM treatments (a medication that helps alleviate bone pain and
strength the bone in children with OI) however, she was very hesitant to accept
that because Avery ‘doesn’t have an OI diagnosis’. Apparently everything is hinging on the blood
work coming back. Despite the multiple
fractures, even the one that occurred in the hospital during a routine
procedure, it seems to make no further impression that her OI diagnosis is REAL. I feel so overwhelmed with all of this.
While at Wal-Mart I felt so miserably uncomfortable. Avery needed to be fed while we were there,
and she was fussy about being in her car seat, so I had to carry her. We got so many stares and gawks from kids AND
adults. I felt like crying. I know that so many families with children
that have this same problem – but it’s never been MY family. I’ve always taught our girls to not point or
stare, and to ask me if they want to know what something is – but some of these
adults were just plain obvious. It wasn’t
a glance and look away – it was a flat out, open mouthed, stare.
Avery is home now. Her
g-tube is working well, although she does have some drainage (yellow pus?)
coming from it. She is still running a
fever, which I discussed with the RN before discharge and was told that this
was normal. Without any Tylenol it has
been about 101. With Tylenol it comes
down to about 99-100.
I was really hoping that this nightmare would be over soon, but it
doesn’t seem to be ending anytime soon. We have an appointment with the
geneticist on December 4th, which CPS is attending (I wish we had
privacy!). In the meantime our family is
trying to adjust to a new life. A life
with a fragile, fragile baby.
I think it's funny that you have self diagnosed your child with a disease that no one else seems to think she has!
ReplyDeleteYou have lost custody of your child and seem to be taking it ever so lightly.
I would get off the computer and for once, take care of your baby!
Who are you to judge? No one...if you feel that you are in the the right then show your self. Stop hissing behind these hatefull comments and step up. Or are you just that miserable in tour own life that you have to try to desttoy this famliy. Or may be its because you are afraid to be proven wrong. You have so little faith in humanity that you automatically assume the worst. Either way Cheryl knows that she has the thoughts prayers of manu we belive the truth will prevail.
DeleteCBass
Oh anonymous, there you are again!
ReplyDeleteIf you knew anything about me you would know that the last thing I am doing is taking the loss of custody "ever so lightly". If you have a suggestion as to how I *should* be reacting, please, let me know.
If you review the times that I update my blog they are usually mid-afternoon or late at night...which, coincidentally, happens to fall within the routine that A follows for nap time.
And for someone who doesn't know me to say "take care of your baby" just further shows how ignorant you are. I obviously created this blog in an effort to 'take care of my baby'. I spent EVERY day and EVERY night at the hospital with her, taking care of her. I spent weeks on bed rest, gave myself shots and actively seeked her pediatricians help - all in an effort to "take care of my baby".
It's not me "self diagnosing" when she was diagnosed by a geneticist, who, by the way, I didn't ASK to see. She was diagnosed by a geneticist who has had 40 years to work with genetic diseases.
And, furthermore, if you are so brave as to come here and accuse me of NOT taking care of my baby, feel free to leave your name. I'd love to have a conversation with you to address why you feel like I haven't taken care of her. It'd be interesting to see a complete outsider's perspective.
With love,
Cheryl
I don't know Cheryl personally, but live on base and have heard about the awful situation through friends. It is tragic.
ReplyDeleteSo first off, I'd like to say to Cheryl, I am deeply sorry for you and your family. However, you all will be in my prayers as you have been on my mind much since I found your story. I am certain you will get answers and that all will be resolved... it will just take some time. I still can't imagine the pain, frustration and exhaustion you must be dealing with. I'm sure you have lots of loved ones surrounding and helping you, but if you need another, feel free to contact me.
About "Anonymous". There will always be cowards who will do what they can to make others as miserable as they are. I understand anonymous has their opinions, but they are not helpful at all, rather they cause further pain and frustration to the people involved in the situation. Unfortunately, Cheryl, that comes with the territory of being online these days and being open to the public, but there is far more good that comes out of it, as you are growing in your community of support.
Take heart and may God keep you strong, baby A and family!
Caitlin M.
Wow anonymous. You have some nerve. If you were any real person, you'd have the balls to share your name. Since you think you're right, please share with us, any if any medical experience you actually have to sit there and continue to harass innocent people. You do realize that's what you're doing, right?
ReplyDeleteCheryl. You're strong. I have had the stares for my son as well as he wore a helmet. Actually had an ignorant person consistently ask me over and over again in petsmart if he wore the helmet BC he was retarded. I simply had to explain it was because of his torticollis and after repeated ignorant questions I proceeded to question her development and question if she was "retarded" yes.. my son may possibly have mental retardation or autism, as that's what we see our geneticist for, but he in no way wears a helmet due do his lack of mental development. Bless you and your precious lil angel. God works in miraculous ways and for lil miss/Mr anonymous .... karma is a bitch. Continue to run your mouth. Shell strike you down. Much love!
Dear Anonymous Jack Wagon!
ReplyDeleteI think it's funny that you have self un diagnosed a child with a disease, that everyon does seem to believe she has. Including her specialist (someone who has went to school and a degree and years of experience) You have none of this to back you up.
You have obviously not actually followed the blog to know that nor apparently know these people, because otherwise you would know they do have custody of their child all three in fact! the only thing they do not have over one child currently is leagal gaurdianship ,which I will add is only temporarily (because you dont know what you are talking about).You seem to be taking this all ever so wrongly.
I would get off the computer and for once look at your life and judge it instead and for once know your facts , Dont be a coward and actually confront the family (if this is how you truly feel) and clean up your own life. Because trust me I know this family and they are not taking this EVER SO LIGTHLY nor does all their supporters.
Cheryl, keep staying strong and keep us updated here! What "anonymous" may not have the mental capability to understand is writing is a way of coping with stress. Being able to express how you feel, good or bad, and share details of your life will allow you a release of emotion you may not get anywhere else. Writing helps the heart heal. It does not mean you are neglecting your children. I can't wait for the day you post the results that Avery has OI. Not that I wish that on anyone, but just so all of this is medically explained. I guarantee "anonymous" won't have anything to say after that. If he/she is too much of a coward to hide behind the computer and not share their name, then to hell with his/her opinions! From one July momma to another.... much love!
ReplyDeletePlease know my thoughts and prayers are with you and your family. Our daughter (now 27) had 7 fractures from the age of 1 to 9. I always suspected something to be wrong. I even asked 2 Orthopedic specialists IF by chance she could have OI. They wrote me off, and said NO, children have 30-40- breaks a year with that! Two times in our lives with her as a child we were questioned about abuse. It was heart wrenching and I will never forget them.
ReplyDeleteFast forward to 2009, our daughter gives birth to a beautiful baby boy, he cried a lot the first months of his life, we wrote it off to a colicky baby.
Our older daughter was babysitting him overnight and accidently fell through the baby gate while holding him. She felt she protected him but his cries were not normal. They took him to the ER..they did a cat scan..bump on head sent home. Cries continued, went back REPEATED SCAN which they should NEVER do so soon together!! Found a small fracture and brain bleed, transferred him to Children's hospital. Child services were all over them, understandably considering a baby 4 months old with a skull fracture. Child services ordered full body x-rays, next thing they know they are being told he has MULTIPLE fractures! I heard the word MUTIPLE so much I finally stopped the lady and said, PLEASE EXPLAIN MULTIPLE!!! She began saying ...arm..arm..leg..leg..etc..I died inside. Thankfully, and I do NOT say that mildly, The doctors began looking again at his fractures and saying they do not look normal. They instantly knew, Thank God, that they were dealing with something different, a bone disease. They ordered genetic testing and also a full body x-ray of my daughter! Their hospital stay turned from questioning, to a team of 14 doctors and so much comfort and help and care. 6 weeks later (and for me as a mother 27 years and two abuse questionings later) we finally got our results and speculations answered. My daughter has Type 1 OI. and our grandson has Type 1 OI. I cried so many different tears that day.
Our grandson had 11 fractures from her trying to have a natural birth, God took hold and thankfully she had a C-section , birth could have killed him and her. Our grandson has had 5 more breaks since then. He is now a little over 2 years old. The light of our lives. He still struggles with gross motor skills delay, he isn't walking yet, but soon, we pray, he will be.
Please know that no matter what in today's fallen world we will have people who judge.
And one day they will be held accountable for their words and their actions.
We just have to pray for people like that. So much hatred in their hearts, it is very sad. They are trying to make your life as miserable as their existence is. Sad isn't it?
Don't concern yourself with people like that. In fact, it probably makes you even more determined to fight for your daughter after reading hatred like that!
Your priority is your child and your family. Continual prayers for you! May you rely on God's strength to see you through.
I don't know you, Cheryl, or your family. I am from an entirely different state. What I want you to know is to stay strong and hold tight to your beliefs. You know in your heart what is right and what is wrong with your own child.
ReplyDeleteI have experienced this and the idiotic comments and stares as well. My son was born with a hole in is diaphragm. To keep this short, he had only 10% of his left lung and 60% of his right lung. On the outside he was beautiful and over 9 pounds! On the inside, very little worked. I had to endure neighbors, friends and even some family, comment that we were making it worse than it was and he looked "fine!" Well, after 4 months in NICU and 13 surgeries, he came home with a G-Tube, J-tube, Broviac Line, 3 monitors and 9 medications. People would stare because we had a double stroller to haul equipment in the front and protect him in the back. He's almost 17 now. The only time people stare are when they see him without his shirt on. He has embraced the fact that his life is a miracle and he tries to give back at every opportunity.
We are praying for your precious child. My husband, as a physician has already agreed with the diagnosis, just from your description. He said it was pounded into their heads in medical school to watch for OI. Your baby is "classic OI" in his opinion.
People will be judgmental, negative, and disruptive to your life. Try to remember that God is able to pour out more wrath on them than you need to even think about. Leave it to Him. Walk away with your head held high and just ignore them. They aren't worth the heartache.
From the very beginning all signs point to abuse. You now need to prove your innocence, and wait for an actual diagnosis. Til then you should get off your computer and take care of your child. If a diagnosis comes back and proves OI, then you can say "told you so". This blog is out there for the world to see, and you are asking to be judged. There shouldn't be a space for comments if you don't want to hear from others. So from an outsiders point of view you need to let the pieces fall where they may, and stop putting your private life out there for the WORLD WIDE WEB to see. May God be the real judge for this incident and strike you down if harm was brought to her by you. If not may God watch over your little girl and protect her from further pain.
ReplyDeletekeep the bullshit out, and raise your daughter!!!
Sincerely, S ( not any other anonymous on here)
Dear "anonymous"----Who the heck do you think you are?! Also, please remind us what area of medicine you degree is in as I seem to have forgotten. I DO have a medical degree and work with children/babies. I have reviewed all of Avery's history and current s/s. It's in my opinion, as well as the opinion of many people I work with (who have also reviewed the info unbiased) that she DOES have OI. If you'd pull your head out of your ass long enough to pay attention, you'd see that Cheryl stated the geneticist said that based on clinical findings Avery has OI...we just need a definitive blood test. How DARE you judge Cheryl and her situation. Do you seriously have nothing better to do than to attack a mom who is trying to raise awareness about a disorder so that another family doesn't have to deal with this as well. I serisouly wish this website could trace your posts so Cheryl could find out who you really are since you're too cowardly to post your real name. And another thing...don't you DARE bring God into this. NOTHING you've said to Cheryl is christian-like in any way. As a christian...I'm ashamed that you would act in such a way and then you try brim Him into this. You must not have too much of a problem with Cheryl and her situation as you seem to keep reading her posts and attacking her in comments on them.
DeleteERC
As you can see from MY last and only post myself. Where it says "not any other anonymous" that this is only MY second time writing. You would have noticed if your head wasn't up YOUR ass. :) I was trying to be polite and show the outsiders point of view and how it's seen. And while your head was still up your ass you must have missed where I said the "actual diagnosis" meaning the blood test. Wait for the pieces to fall into place when you get the answer of an OI diagnoses then raise awareness. You can't raise awareness of innocent people becoming victims until you prove you are innocent. Till then a low profile should be kept. That is all I was saying. GOD bless Baby A!, and fuck you ERC, learn to read.
DeleteGod Bless, S
Dear S,
DeleteI hate to bring you further into a web you might not want to go into but I, Kassandra Burr, am the sister of the accused and I can tell you from an insider prospective and one who has read and done research on this disease. An actual diagnosis for OI or Osteogenisis Imperfecta is as stated from their website..."Diagnosis for OI is primarily based on signs seen in a doctor’s examination. When there is uncertainty about the diagnosis, it is best to consult a physician who is familiar with OI. Genetic testing is available to confirm a diagnosis of OI through collagen or gene analysis—a skin sample or a blood sample are used to study the amount of Type I collagen or to do a DNA analysis." However, the website, if read all the way through, states that the BLOOD TEST isn't 100% accurate because it is new and there are so many different mutations that some have NEVER been diagnosed. So as far as your actual diagnosis comment is concerned it is invalid because she has already had an actual diagnosis and NO ONE in the medical community or CPS where we are located are educated enough on this disease to see it as what it is. While we do appreciate the outsiders view,the fact that you have brought 1. God into this equation and 2. your obvious lack of an educated opinion into the matter shows that you yourself are accusing before you have all the pieces yourself. How very CHRISTIAN of you!!! Before you judge, please have the facts and be educated in the issue. As for raising awareness you don't have to be innocent, not saying in anyway that my sister isn't, to bring light to a very bad situation. Being guilty until proven innocent happens all the time in child abuse as well as being quilty and still being seen as innocent.
As far as your GOD BLESS keep it to yourself because your CHRISTIAN attitude shines very clearly on this page. Also please don't use language that isn't CHRISTIANLY because it too shows your GODLY love of all. This profile isn't low profile because it is meant to educate and bring light to the fact that thousands of people are undiagnosed with OI and parents are wrongly accused all the time in this matter because our SYSTEM is failing.
ERC-I know for a fact that you can read and that you are a CHRISTIANLY person so please don't let S bother you. Lots of Love and Miss you!
EVERYONE ELSE-THANK YOU FOR YOUR SUPPORT
I think that we all need to stop giving these people the attention they so badly crave. we are fueling the fire by getting mad and having blog wars. this family has been through enough with past accusations that also proved false. a mother knows her own child. she knows when there is a problem. and this mother from day one has done everything in her power to protect her child. I believe in Cheryl. and those who know and love her and want to be a supportive shoulder should be more concerned with her and her situation instead of starting fights with "people" who want to leave hateful comments. my mom always says opinions are like ass holes, everyone's got one. hold your head up guy midkiff family, you are loved and supported!
ReplyDeleteMy thoughts are with you, your family, and your precious little fighter, Avery. My infant son passed away in February due to extreme brain damage suffered during his birth, because the medical staff taking care of us made numerous mistakes. My life will also never be the same. Watching your child suffer and being unable to help them is a kind of pain that no parent should have to endure. I wish peace and healing for all of you.
ReplyDeleteCheryl you and baby Avery are in my prayers! I'm sorry that anyone needs to add any stress to your situation. I know very well how talking about something can be very cathartic. I greatly appreciate the updates about your angel. It seems like so far you are making the best of a bad situation and it is obvious how strong you are!
ReplyDeleteHi Cheryl, FYI, you can activate comment moderation to keep Anonymous from checking in with the ugly commentary. Also, if you install Sitemeter (it's free!), you can check the IP addy, etc., and find out who is so intent on pouring metaphorical salt in an open wound. I am praying for you and your family. Stay strong.
ReplyDeletediaper off lets se it
ReplyDelete