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Showing posts from April, 2013

Victory Dance

I hate potty training.  Hate. It. With. A. Passion.  I tried with James but finally just sent him to my Mom's for a week so she would do it for me.  With Jude I have literally put in zero effort to potty training. Ok...well one time last week I sincerely asked him if he would mind letting me know when he has to go tee tee so that I could get his tee tee in the cup for his labs.  He didn't comply and that has been the extent of my potty training Jude.  James, however, has been trying diligently to potty train him.  And today, after playing in the sprinklers they came into put on dry clothes.  Jude came in with big boy undies on.  I told him if he was going to wear undies he had to go tee tee in the potty.  Done and done.  3 or 4 tee tees in the potty!  There was much celebrating...and I discovered that Jude has a most awesome victory dance!     He even got James swept up in the excitement. Katy Jane's physical therapy went fine today. Sort of pointless actually.

Around Here

I am still trying to get the labs on Jude.  We usually have to take several stabs at it before we are able to get it but hopefully we will get it done this week. Katy Jane is still struggling.  She has started a new addition to her "spasms".  I don't know how to explain it very well but she circles her arms and legs.  I have sent a video of it to her specialist in Dallas to see if he has any thoughts or suggestions.  Yesterday she seemed to be wincing as if in pain.  Today we are having her evaluated for physical therapy and Wednesday she will be evaluated for speech and OT.  I am heavy-hearted and tired of not knowing what is going on or what I can do to help her. She had her first taste of ice cream the other day and loved it.  Sweet girl. James loves getting to help us in any way he can.  He literally runs to help us and is joyful when he thinks of things he can do to help.  He has such a sweet and compassionate heart.  He loves to work hard.  He planted our

The Healing Touch

James has been very concerned about his baby sister's sweet little head.  He checks it daily to see how she is healing.  He also prays for her often.  From reading the Psalm 91 book , we have taught them to say "pain go away, in Jesus' name" anytime they have a boo boo.   He was also a turtle for the better part of the morning. A helpful turtle though. Katy Jane also had her nails painted for the first time today.  So pretty. James is a great baseball player!  Today Jude got in on the fun. Not sure baseball is going to be Jude's sport.  We'll see.  But I do know that they have the best Daddy in the world.

Words

Everyone around here is recovering.  Katy's sweet little head is SO much better.  I got her all dolled up for church but she wouldn't even let me think about putting a bow in her hair.  She cried when I even combed it.  Hopefully she will forget the trauma over time.  However, Jude was only 6 months old when he had his first trauma with a therapy dog in the hospital and he still has issues with animals.      Last night after church we went to dinner and ice cream with Dr. Honey and her girls.  The ice cream place we went to is right next to a tanning salon.  James was curious about what it was and the conversation went like this: James: What's that place? Me: A tanning bed place. James: A what? Me: A tanning bed place. James: What's that? Me: A place people go to get tan. James: What? Me: A place people go to get tan. James: What's tan? Me: Like Dr. Honey. (Indian) People go there to try to look like Dr. Honey. James: What? Me: Like Dr. Honey.  Dr

EEG, EKG, OMG

I just thought I was going to get some rest now that we are back home.  But James had other plans.  He woke up early Thursday morning around 1:30 am and came in to our room burning up with temperature and complaining of a headache.  He had a 102.4 temperature.  I took him into see Dr. Honey Thursday afternoon and we got him on a prescription, but while we were there she noticed that he has a bit of a concave chest and did an EKG on him.  We pretended he was a robot and he took it all in stride. Yesterday afternoon he started complaining of not only a headache but also a tummy ache.  He rallied one more time before bedtime and was able to eek out a little more playing then crashed and went to bed.  This morning he woke up bright and sunshiny happy to report he feels great! Back to Katy Jane.  I spoke to Dr. Brown's nurse yesterday to ask my questions.  His official diagnosis is that he thinks it is the Sandifer's Syndrome, not neurological.  He is going to send it to an

Another Quick Update

I will give more details after Katy Jane and I get rested up but wanted to tell you quickly that we were released from the hospital this afternoon.  Dr. Brown (the pediatric neurologist) saw the spasms on the EEG and they are not seizures.  He is not sure that they are not neurological though.  He threw out a lot of big words and conditions that I need clarification on and am waiting to talk to Dr. Honey about.  So after 3 days in the hospital we left with more questions than answers. We are happy to be home with all of our boys and looking forward to a good night's rest.  Thank you for your prayers for our sweet girl.

Quick Update

Katy Jane and I saw Dr. Brown early this morning and then were admitted to the hospital and she was hooked up to the EEG.  He did have a couple of encouraging things to say like he thinks she looks healthy and....well...come to think of it, that is the only encouraging thing he said but I will take it!  Katy Jane screamed like crazy the whole time the EEG guy was attaching the probes to her sweet head.  She was so upset, screaming, crying and thrashing around that she started sweating and the probes started sliding off.  Ugh.  So he had to use some sort of stinky glue that is going to be NO fun to get out of her sweet hair. I think we may have gotten a spasm or two on the EEG but I am not 100% sure and I do not want to leave this hospital until I am.  I am praying that we definitely get one so that Dr. Brown is able to say without a doubt weather this is neurological or not. Meanwhile...I am missing my boys like crazy.  I hate being away from them.  Brad went over to Nana's

KJ

Katy Jane will be admitted to the hospital for 3 days on Monday for a video EEG.  We are praying this will give us the much needed clarity as to what is going on with our sweet girl.  We had a great deal of difficulty getting the new medication but were finally able to get it Thursday after our nurse spent several days on the phone trying to get it.  I am so grateful for Raine and Dr. Honey and how they advocate on our behalf.  We are tremendously blessed.  So far the new medicine seems to be helping but I am being cautious with my hope because we have been down this road several times before thinking something was working for her and it was short-lived.  Lately it just seems like the light is gone from her eyes and I feel like she looks sickly.  She's not as cheerful and bright-eyed as she once was and it is killing me.  It breaks my heart.  I'm assuming it's due to pain but I just want some answers.  She is eating less and is not as interested in her baby food as she once