That's the million dollar question of the night. I was hoping we would have an answer and we dont just more questions now! ugh. Ohio called dr m said i want her to see dr x before we go in surgery. ME: WHY? what is the reasoning? Dr M: Just to see if we meet eye to eye on this then plan your surgery. Me: Oh hell no! So dr m says they will call me back later. Btw they were supposed to call me back when we left ohio to let me know all the details of appointments. No they have to be terds. Literally talk to their staff and you will spewing venom. So the nurse that was supposed to come out or whatever. Never called or anything. So I was the lone stranger. Then I called arkansas childrens hospital. I said i am calling from ok for dr b's office and trying to find out if you do this procedure. One min.. cheif of surgery. Yes mam we do. ME when can you get her? Next week. ugh.. Please let this come through. She needs it bad!
I Call the neuro doc and she is just as frazzled bc the sect in ohio was terribly rude to her. Does not surprise me! But alas lets remember why we are doing this. For ms K! So tomorrow ms L from dr b office is calling ohio to bug them! She said I will have an answer for you TOMORROW! She said i dont have pt's till noon so they will hear from me every 30 mins! She is serious too! So say some prayers that we can get her what she needs.
Btw we took older girls with papa and watched shrek 4. they loved it! I got me a new car bc mine was totaled. Then btw my roof has a leak thanks to the freaking hail. We are hoping to do a car wash in august for ms k..and hopefully get our t-shirt sales going this coming month.
Tuesday, June 1, 2010
Sunday, May 30, 2010
A plan for a few things.
So as i am trying to gather my mind to put it to rest i was like oh go blog! So I have to tell you about alexus at the dealership today. She is potty training and no potty was available as they are closed on sundays.. She went pee by a tree. She said mom I peed like a dog does. Omg rofl. It was hilarious!
So my update is that I have passed most of my finals. I find out on wednesday for sure. I start back on the 14th of June. I am excited to keep going. Due to the lovely hail storm my van got totaled so that is why i am looking for a car. I think I found one.
Friday k went to the doc. I wanted to yell, scream, and cry. And you know what?! I did all 3 and the doc just said mom you do it! So kenadie's disease is irreversable. Her labs came back poopy again. Ohio said they wont do her test until we get all the money together. Which is poop! So we dont have time like that on our hands. So tuesday I will be using my unlimited cell phone minutes calling a bunch of hospitals. We also will have to know approximate dates. Her pedi will put her in the hospital to get our surgery asap! Our home health is going to send an office person to my house to help me call! Hopefully we will be in the hospital fast! If you can help with any donations for our flights or anything please let me know. We will be there about a week. So anything can help!
Also I need some advice. First I want to ask all my readers a question... What is family to you? What do expect from your family in a crisis of such?
Okay so my advice part.. I have a person in our lives who is in denial about kenadie. And everything seems to be about that person. Why dont I tell them xyz but when i do I cant handle xyz. What do you do about them?! I would love to go deep in this but i have more than enough to deal with but deal with more drama. I honestly dont know what to do. My dh says forget it and dont bother with it. My brain says fix it with my fists and/or mouth. But my heart says alot.. and it really hurts. When i grew up. I stayed the night with my aunts and uncles. I always seen my family. I would like to think we were somewhat close. Now.. ha! So i just want that for my children. I have some people like ab who stays in contact with us. I feel like if i need to i can call anytime. Then my supportive people. But really those who could just pitch in an hr once a month or something. We are not asking you for your life or something. God forbid anyone finds them in our situation. I pray it never happens. so advice on how to handle tis please.
so this week.. be on the look out where we will be going to for surgery. it will be release on the blog first! :)
So my update is that I have passed most of my finals. I find out on wednesday for sure. I start back on the 14th of June. I am excited to keep going. Due to the lovely hail storm my van got totaled so that is why i am looking for a car. I think I found one.
Friday k went to the doc. I wanted to yell, scream, and cry. And you know what?! I did all 3 and the doc just said mom you do it! So kenadie's disease is irreversable. Her labs came back poopy again. Ohio said they wont do her test until we get all the money together. Which is poop! So we dont have time like that on our hands. So tuesday I will be using my unlimited cell phone minutes calling a bunch of hospitals. We also will have to know approximate dates. Her pedi will put her in the hospital to get our surgery asap! Our home health is going to send an office person to my house to help me call! Hopefully we will be in the hospital fast! If you can help with any donations for our flights or anything please let me know. We will be there about a week. So anything can help!
Also I need some advice. First I want to ask all my readers a question... What is family to you? What do expect from your family in a crisis of such?
Okay so my advice part.. I have a person in our lives who is in denial about kenadie. And everything seems to be about that person. Why dont I tell them xyz but when i do I cant handle xyz. What do you do about them?! I would love to go deep in this but i have more than enough to deal with but deal with more drama. I honestly dont know what to do. My dh says forget it and dont bother with it. My brain says fix it with my fists and/or mouth. But my heart says alot.. and it really hurts. When i grew up. I stayed the night with my aunts and uncles. I always seen my family. I would like to think we were somewhat close. Now.. ha! So i just want that for my children. I have some people like ab who stays in contact with us. I feel like if i need to i can call anytime. Then my supportive people. But really those who could just pitch in an hr once a month or something. We are not asking you for your life or something. God forbid anyone finds them in our situation. I pray it never happens. so advice on how to handle tis please.
so this week.. be on the look out where we will be going to for surgery. it will be release on the blog first! :)
Friday, May 28, 2010
Link for the first fundraiser!
MS. ERIKA HAS SAID SHE WILL DONATE ALL PROCEEDS FROM SALES TO MS KENADIE!
LINK:CraftyRika.blogspot.com
come on and lets help the diva!
LINK:CraftyRika.blogspot.com
come on and lets help the diva!
Tuesday, May 25, 2010
I can't sleep!
so lovely lady decided to throw some irregular beats tonight. Her nurse is finally here but i still can't sleep. So i thought i would share this link about mitocondrial disorder which is what they are suspecting she has. Blood work is lining up with it. http://my.clevelandclinic.org/disorders/mitochondrial_disease/hic_mitochondrial_disease.aspx
Okay so we talked to cardiology this morning 2x's. First time i was told maybe your tired and over thinking it and she wont die so she is good. The second time it was a total different story. He called and got her 30 day monitor from her okc tracing and it show quite a few bradys and tachys. So now we need to catch a good episode again bc the one transmission i sent did not go through. Then we will talk about it in clinic in july. They could possibly admit tomorrow depending what her pedi says.
i just dont know what to think. I broke down after talking to her cardi after the 2nd time. I dont know what to do or think or say. My heart feels broke for her. I am so scared something will happen to her. I am trying my best to make sure she stays healthy.
Okay so we talked to cardiology this morning 2x's. First time i was told maybe your tired and over thinking it and she wont die so she is good. The second time it was a total different story. He called and got her 30 day monitor from her okc tracing and it show quite a few bradys and tachys. So now we need to catch a good episode again bc the one transmission i sent did not go through. Then we will talk about it in clinic in july. They could possibly admit tomorrow depending what her pedi says.
i just dont know what to think. I broke down after talking to her cardi after the 2nd time. I dont know what to do or think or say. My heart feels broke for her. I am so scared something will happen to her. I am trying my best to make sure she stays healthy.
Monday, May 24, 2010
Craziness going on with the Diva!
Lord only knows what to say about the diva. I am full of emotions as i sit here in her room and her hr is 70. Okay so I will start whre I left off. Kenadie had arrived in dallas on Tuesday. Had a blast playing with the kiddos down there. Then check in at 6am. Let me tell you I hate seeing 5am esp when i have to explain dysautonomia to 10 different residents that think my child must be a circus. How much should I start changing for admission?! So then we met with the anastetic doc came in and said btw kenadie has a minor heart block. umm SAY WHAT?! We were not called by our cardiologist. So we just said okay and kept going on. She was cleared for the procedure though. So she has it done then they spring it on me that she has to be npo the rest of the day along with strict beddrest and no they are not giving a sedative! WTH are we in cruelty punishment now?!This is total bull shit! She is an active 19mo and she loves to play. But she was a great trooper and as long as momma laid in bed so did she. She had one heart spell fornanna with a nurse who did not understand the disease so that is always a journey. Nanna did great. So we come home and I take k to the doc on friday for a regular check up after we get back. He has to see her make sure she is in tact i guess. Thank god we like him! He is the one that explained the 1st degree heart block to me. Then I got some labs in the MAIL! Yes you read that right.. The mail! Her protien, liver, and pancreas are off. So I took them up today and he just happen to hear me talking and came out to talk to us. He said I think it is mitocondrial disease. Not the most common type either. Well knock me while i am down. He stated he wants us in cleveland right now. Hello I dont have a dime yet for this trip. But we will do whatever. I will put my house up to ensure my daughter gets a good quality of life. So they will call us this week to tell us what to do next. Friday night kenadie had a 6 minute non responsive to stimuli spell for her nurse. Then I am in her room right now bc she gave her nurse a few of them tonight. I am so stressed. I have 6 more finals to do and this. I dont know how to do it all. I am scared I am going to lose my daughter. I really need our family of friends and peoples right now. Until we get some clarity. She is an amazing little girl. She is strong. I know we can get through all of this!
Btw our little buddy might get to go home this week. Maryn. She needs to get in playing shape! ;)
Also i would like you to keep ridge in your prayers. He is a handsome baby that we met in the hospital some time back. His momma is an awesome one and deals with his stuff great. I should take lessons! ;) He has a RARE bleeding disorder in his intestines. Gets lots of blood. Please pray for no bleeding so they can be at home and for God to heal his bleeds!
Btw our little buddy might get to go home this week. Maryn. She needs to get in playing shape! ;)
Also i would like you to keep ridge in your prayers. He is a handsome baby that we met in the hospital some time back. His momma is an awesome one and deals with his stuff great. I should take lessons! ;) He has a RARE bleeding disorder in his intestines. Gets lots of blood. Please pray for no bleeding so they can be at home and for God to heal his bleeds!
Monday, May 17, 2010
About to head south again! Hoping to head north too!
Yep just what the title read. However the North part is.. We are hoping Kenadie's friend Maryn can get well enough we can come visit her! She lives in Nebraska! Please pray for her! We want to come up! :)
Okay.. on to business. So first off.. the older siblings. Genesis is having some jealousy issues. She rarely has shown any but now she is and BAD! She is making up for the few years she did not! lol. So daddy and I took her to get her hair done, shopping, and let her pick her resteraunt. We are going to try and do their day once a month with just mommy and daddy time. She said i had so much fun. Just depends on how the funds are looking. :) We are also going to have her councelor start helping in that area too.
Ms alexus is on her second set of castings. Btw for those that wonder what they are for. It is to slowly stretch the muscle. Her heel cords (muscle in the heel) are so tight she has no range of motion and they are stiff.. Think a really stiff neck! OUCH! So we are hoping this solves part of the problem. She will wear splints for a couple years after this. We are hoping to avoid the knife. She also has an mri and cat scan coming of the brain, neck, and spine to try and determine her muscle issues out. We pray with an answer that we can handle! Her sensory issues are touchy. One day we have a good one the next well you just pray the next day is better. Again our councelor is working with her therapist to see if we can get this to help her more. We have seen a slight improvement. As for the asthma holy crapshoots! It is killin us! She is having her breathing tx about every 4hrs or so. Pulmicort and xopenex. They are adding an allergy med this week to see if it will help!
Now for Kenadie.... where to start on my lovely. Since my last brief post the lady bug has gotten gastroenteritis yet again. Still has some left over because her body prossess things very slowly! Everytime she eats she poops much like a newborn. We also have some malabsorption going on so that is not making things pretty either. Although let me tell you the best butt paste stuff.. It is called the poop goo. Its a combo of meds mixed and its AWESOME! Thanks to dr b for that one! Speaking of our pediatrician that we have now is amazing! We absolutely love him. Now he is very forward and tells you how the cow NEEDS to eat the cabbage but he is awesome to his pt's. He called the other night just to tell me he was thinking of kenadie and needed an update on her gastro stuff. Just the compassion is awesome. He reminds me everytime we see him that she is "NORMAL" in his office! It feels so nice not to feel like a burden when i call with questions! He takes them seriously too! So yeah. He was trying to get our muscle biopsy done while we were in the big d. I had my hopes up wich was my first huge mistake. He called today and left a message that ohio said she HAS to see their genetic endocrine doc then have the biopsy done there bc they have a special protocol they have to go by. Only center in the u.s. that is doing this. Well STINKY POO! If i may be honest i was upset! I figured she was going to be out might as well get it all done so i dont have to watch her suffer again and again. The test we are about to endure is cruel to me. She has to lay down for 8hrs straight! yes straight! umm i think they lost their minds! No sedatives bc it can affect the test. But we are asking about other options. We have done this one before and it wasn't pretty!
Btw i have finals next week.. An extra prayer would be nice for me. I have got to pass my anp class. The rest i am doing okay in.
Okay.. on to business. So first off.. the older siblings. Genesis is having some jealousy issues. She rarely has shown any but now she is and BAD! She is making up for the few years she did not! lol. So daddy and I took her to get her hair done, shopping, and let her pick her resteraunt. We are going to try and do their day once a month with just mommy and daddy time. She said i had so much fun. Just depends on how the funds are looking. :) We are also going to have her councelor start helping in that area too.
Ms alexus is on her second set of castings. Btw for those that wonder what they are for. It is to slowly stretch the muscle. Her heel cords (muscle in the heel) are so tight she has no range of motion and they are stiff.. Think a really stiff neck! OUCH! So we are hoping this solves part of the problem. She will wear splints for a couple years after this. We are hoping to avoid the knife. She also has an mri and cat scan coming of the brain, neck, and spine to try and determine her muscle issues out. We pray with an answer that we can handle! Her sensory issues are touchy. One day we have a good one the next well you just pray the next day is better. Again our councelor is working with her therapist to see if we can get this to help her more. We have seen a slight improvement. As for the asthma holy crapshoots! It is killin us! She is having her breathing tx about every 4hrs or so. Pulmicort and xopenex. They are adding an allergy med this week to see if it will help!
Now for Kenadie.... where to start on my lovely. Since my last brief post the lady bug has gotten gastroenteritis yet again. Still has some left over because her body prossess things very slowly! Everytime she eats she poops much like a newborn. We also have some malabsorption going on so that is not making things pretty either. Although let me tell you the best butt paste stuff.. It is called the poop goo. Its a combo of meds mixed and its AWESOME! Thanks to dr b for that one! Speaking of our pediatrician that we have now is amazing! We absolutely love him. Now he is very forward and tells you how the cow NEEDS to eat the cabbage but he is awesome to his pt's. He called the other night just to tell me he was thinking of kenadie and needed an update on her gastro stuff. Just the compassion is awesome. He reminds me everytime we see him that she is "NORMAL" in his office! It feels so nice not to feel like a burden when i call with questions! He takes them seriously too! So yeah. He was trying to get our muscle biopsy done while we were in the big d. I had my hopes up wich was my first huge mistake. He called today and left a message that ohio said she HAS to see their genetic endocrine doc then have the biopsy done there bc they have a special protocol they have to go by. Only center in the u.s. that is doing this. Well STINKY POO! If i may be honest i was upset! I figured she was going to be out might as well get it all done so i dont have to watch her suffer again and again. The test we are about to endure is cruel to me. She has to lay down for 8hrs straight! yes straight! umm i think they lost their minds! No sedatives bc it can affect the test. But we are asking about other options. We have done this one before and it wasn't pretty!
Btw i have finals next week.. An extra prayer would be nice for me. I have got to pass my anp class. The rest i am doing okay in.
Sunday, May 9, 2010
An update from cleveland and more!
Before we start this post off.. please get your fundraising minds out..this mom needs your help! Okay to start with this. Kenadie's private insurance coverage was lost due her pediatrician not being able to see her. We finally found one we love and weren't using her private coverage only when we were traveling and so we had to make the choice. Dropping it. Now here comes the fundraising part. To see the docs we have to pay 200.00 out of pocket each time plus airfare! Mind you Kenadie's dysautonomia is rare so we can only see 1 group of md's in cleveland ohio. They dont take oklahoma medicaid either. So i dont know what we are going to do.
So speaking of cleveland. We seen the doctor on thursday. He was baffled as to what is going on. We are progressing in some areas with our dysautonomia symptoms (which you dont want to be). So he is really pushing for a muscle biopsy. He wants a live biopsy which is rarely done i guess. So he wants her to see this special gene doc then have the biopsy done while she is there in cleveland hopefully. Then wants to start her on a vitamin and amnio acid treatment to see if we can help the symptoms stay where they are and not progress. I have to say I am a bit scared when it comes to this.
So speaking of cleveland. We seen the doctor on thursday. He was baffled as to what is going on. We are progressing in some areas with our dysautonomia symptoms (which you dont want to be). So he is really pushing for a muscle biopsy. He wants a live biopsy which is rarely done i guess. So he wants her to see this special gene doc then have the biopsy done while she is there in cleveland hopefully. Then wants to start her on a vitamin and amnio acid treatment to see if we can help the symptoms stay where they are and not progress. I have to say I am a bit scared when it comes to this.
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