Thursday, August 29, 2013

Some Exciting News

Battley Cate and I just got home from the doc office.  I think it is finally safe to say that she is over whatever illness she had.  Thank you for your prayers for her!  She is cutting a new tooth which I'm sure doesn't feel good, but overall she is feeling much better!

I haven't given a good therapy update in a bit.  We are working on reaching, some signs, recognizing certain objects, identifying them when asked, and overall muscle tone and control.  The pic I will post below was taken yesterday at Physical Therapy.  Notice where the therapist's hands are...one on the floor and one poking her in the neck to keep it tilted upright.  Battley is doing SO well with learning to sit up...don't get me wrong...we have a ways to go, but I could not be more proud of how hard she works to do these things!  Sitting up is something that I never dreamed would be in her future!  I really just hoped for her to be able to hold her own head up.  I do hope now that she can learn to sit on her own and someday become mobile in whatever way works for her!  She really does amaze me!




On to some other exciting news:

We have a local school for children ages birth-6 years who have special learning needs.  I, on the advice of B's therapists, put her on the waiting list about 6 months ago.  She was #37...which I was told could be a 3 year wait.

We received a note in the mail last week that she is now #19!  Truthfully I do not think I am ready for her to go to school (it's just a morning program), but that doesn't mean anything really because I'm not in the driver's seat here!  My prayer is for us to make the decision if the time comes that is in B's best interest.  Did I mention they are working to add another class?  This would probably mean she moves up on the list faster.

Why do I share all this "not really news yet" news?  So you can pray with us that IF this is the right thing for B that it fall into place at the right time.  Thank you!

C

Thursday, August 22, 2013

Confirmed Good News!!

Battley's echo is looking good!  This means there is no infection in the heart and her pulmonary hypertension is still keeping her out of heart failure!  Woo-hoo!

The blood culture is also negative...yay!

Her white blood cell count numbers taken Monday are still elevated but down from what they were.  We will recheck them next week unless she spikes a fever before then.

This illness looks like one of those that will go down in the books as an unknown...oh well!

Thank you all for your prayers for her!  She still doesn't feel 100%, but seems to be feeling a little better each day.

C

Tuesday, August 20, 2013

Good News

I don't have official good news from the doctor just yet, but it seems like B is feeling better!  She hasn't had a fever in over 24 hours!

We had a little change of plans yesterday.  Our pediatrician was out so we went straight to the Children's Hospital where our Palliative Care doc sees patients.  His amazing nurse was able to draw blood on the first stick!  So that is off for a blood count check and a blood culture.  Hopefully we should know some results later today.  Then we hung around for a while until we could get in for an echo.  Our doc didn't read it right away so we will hear official results later today.  The lady who did the ultrasound didn't see any infection and the doc who gave it a glance (not our regular doc) didn't see any obvious signs! 

So now I have to brag on my gal...we have read and been told that she may not know the world is going on around her...well that is so NOT the case obviously!  She is always showing me just how smart she is and yesterday was a good one!  B has literally been stuck for a shot, finger prick, or to draw blood over 10 times in a little over a week.  As soon as I laid her on the table in the exam room she knew what was coming and started screaming!  What kind of sicko is delighted to hear her baby screaming...ME!  Also remember she couldn't scream when she was born...didn't have the strength for it...so we still get a kick out of it for that reason too.  She knew exactly what was coming.  She did it again in the echo room until I told her we weren't going to stick her.  Ugh...love her!

I will try to post an update as soon as I hear something.

C

Sunday, August 18, 2013

progress

B has been a good while this weekend with no fever.  It's back tonight though...boo!  It's only gotten up to 100, but please keep praying for her!

We are off bright and early in the morning...yes, this will be week 3 of doc appts almost every day!  The tentative plan is to do another blood culture and have an echo done.  We will go to the doc office first, then possibly to the ER for blood to be drawn (maybe this can be done in the office, but poor B is all bruised from all the sticks in the past 2 weeks so they may not even try there), then to another clinic for the echo.  Hopefully after all that we will stay out of the doc office until Thursday when we have a regular appt with another doc!

Even though B doesn't feel 100%, she was still smiling and laughing today!  She's such a trooper!

C

Friday, August 16, 2013

Friday Update

We just got home and settled from our 3rd shot of Rocephin.  Here is what we do know:
* her blood count was up to 33000 again so there is some type of illness
* blood culture is negative so far for bacteria growth
* she still feels poorly
* fevers are trending downward overall...this is good news and hopefully will continue

So...
* we are going to go the weekend with no antibiotics and recheck her blood again Monday
* we are going to get a heart echo on Monday to make sure there is no infection in the heart.  If this is the cause of the fever, we will for sure have to treat very aggressively in the hospital with antibiotics.

I am just praying that this is going to be one of those unknown illnesses because she gets better this weekend and we don't have to keep digging.

All of this medicine has upset her tummy pretty badly so we have some probiotics going to get her gut back on track now.

Thank you all for your calls, texts, emails, and prayers!  I had a little meltdown yesterday when I heard something that scared me (with a few preggo hormones thrown in), but our awesome doc called and calmed me down.  Please keep the prayers going up for my gal!

Y'all are sweet for asking about the baby...Mr Baby Terhune will be here around the first of November.  I will have a c-section since I had one with B.  He is doing great...just moving and kicking all the time.

C

Wednesday, August 14, 2013

The Scoop from Today

Back to the doc again today.  They are doing a blood count and a blood culture, which meant they had to stick her and draw blood.  It didn't go well...they had to stick her 3 times before it worked.  Thankfully this kept us from going to the ER to have it done (which was about to happen until stick #3).  We are looking at 2 options now:

1: She has a blood infection...possibly the bacteria from her UTI got into the blood stream.  This would mean 10 days of Rocephin shots.  She had shot #1 today.  These are super painful.  This doctor's office is not open on the weekends, so to avoid a hospital stay (which was offered) I agreed to take her to the ER over the weekend to continue to get her shots.  OF COURSE I would rather do that than stay in the hospital.

Her UTI is gone, so the blood infection is the only thing the docs can think of as a possibility now.

2: If it is not a blood infection then this means a for sure hospital stay to figure out what is going on.  I LOVE our children's hospital.  We are so blessed to live so close.  I do not have one single complaint about it...even the parking is okay!  BUT...it is SO hard to take care of my gal the way I like to in a hospital.  She prefers to be held way more than is possible when she is hooked to all those machines.  So I am for sure praying that we don't go this route!!

Thank you all so much for your continued prayers!  My specific prayers are for complete healing and no more fever now that we are getting this round of shots...also no hospital stay.

C

Ongoing Fever

Battley woke up running 102 fever again this morning.  We're starting to get very concerned because we don't know why (still a fever).  After tackling the UTI and determining that her lungs are clear of pneumonia, this will be one week of straight fever.  Catherine and Battley are headed back to the doctor this morning. Please pray for Battley to feel better and for Catherine to figure out what's making Battley feel so yucky.

Thursday, August 8, 2013

Feeling Yucky

Miss B is not feeling too well right now.  She has a UTI.  She has had 2 shots of Rochephin and we may go back for a third tomorrow morning.  Yesterday after her first shot she started running a fever of 103.4...very scary for Momma.  Motrin and Tylenol haven't helped much so we are playing the waiting game.  She is doing better today, so hopefully by tomorrow she will be feeling even better.

H started HIGH SCHOOL yesterday...I am NOT really okay with this.  I wish I could shrink him back down to 2 or 3 and start all over!  I have a few weeks to get okay with this though before he turns the BIG 1-5 and gets his Driver's Permit!!!  

Hmmm...that's it around here.  It's too hot to do anything or go anywhere...haha!  

C