Hope...is a good thing

Sunday morning (10:30am), January 5th Catherine will share Battley's testimony of hope at our church FBCJ Madison Campus.  Please come or tell someone you know if they might want to hear a condensed story of Battley's life and our hope for her.

Because I'm a whimp when it comes to speaking, Catherine is stepping up Sunday.  I've recently started thinking about hope and what I might say from a man's perspective if speaking (on-stage).

Prison movies are "movies for guys who like movies".  Escape From Alcatraz, Cool Hand Luke and Shawshank Redemption are some of my favorites.  Most men have probably seen Shawshank Redemption as it airs on TNT at least once every two months.  BTW it was nominated for seven academy awards.

When Catherine and I discovered our unborn daughter had this chromsonal abnormaity, incompatible with life, we needed hope.  However sometimes the statistics and even doctors offered little hope.  It's like we were surrounded by stone walls and Red was telling us, "Hope is a dangerous thing. It will drive you insane".

Well we had hope and found more hope.  Much of what Battley has endured is miraculous and is a direct answer to prayer.

Fast foward to the day we discovered Battley was not in heart failure.  Can you remember Red reading Andy's letter where he says "Remember, Red, hope is a good thing, maybe the best of things.  And no good thing ever dies"?

Well, when Andy finally greets Red on the beach in Mexico...this is how I feel everyday when I come home from work and scoop up Battley into my arms.

update

We are still here!  It's pretty hard to find time to blog these days.  Mr JM is keeping me on my toes!  I just wanted to share a few exciting things that have been going on.

Battley is doing very well with her therapy.  She is actively playing with toys now.  This is something that is huge for her.  She wasn't interested in even looking at toys when we started therapy in Feb.

She is also doing lots vocally now.  For example: if I say "I love you" she will make a 3 syllable sound back to me.  Last week she actually said "I LOVE YOU" to me and to my mom.  I didn't get it on video, but I'm working on it.  She has also done a few other signs...we work on these daily.

The BIG news here is that Battley was accepted to the Little Light House.  This is the school we had her on a waiting list for.  We went for an evaluation last week and are praying about it.  Please help us pray for wisdom to know if this is the right time for her.  We have a week to decide.  She would start Jan 7th if she goes!

C

Oh and we didn't do a Christmas card this year so that is why I posted a pic of all 3 kiddos.  It was just too much this year.

Merry Christmas 2013

JM

Look who has his picture added to the blog now!

C

Time Flies!

JM is already 1 month old!  I have no idea how that happened!  It's busy here so I probably only have a minute or two while both are napping!

These 2 are totally in love!  This pic was from last night.  

JM: 11lb-4oz

B: 14lb-4oz

B and I do her exercises/therapy during the day when daddy and bro are away.  Since it's just me, it's hard to hold her up and take a pic.  One day we got H to take a pic while she was sitting up all by herself for a few seconds.  This gal totally amazes me.

And just to get in one of H, here are H and B when they got home from church...I have strong feelings about taking B to church, but that post will have to wait for another day.

C

JM Terhune

As promised...photos of new baby boy...

Battley loves him. 

His first soccer game:

C

Introducing...

J M Terhune
Born Nov 4, 2013
7:56am
7lb-14oz
20" long
Such a good baby...everyone doing well!

Pc not working now.  Will add pics when it's fixed.

Random

There is no point to my post today.  I just happen to have a few minutes while B is napping.

She is still cutting a few teeth.  I think for that reason she has not wanted to nap all week.  I was getting a little worried that she would never nap again...crazy me!  She would fall asleep when I was feeding her, I'd put her in her crib, and in 15 minutes she would be awake...smiling and rolling around.  Then if I left her she would start fussing.  She knows I will go get her...stinker!  BUT today she is really napping.  I'm thinking her nap time will be handy when her baby brother is here.  

We don't have a strict routine, but she usually sleeps until 8:30 or 9am except days when we have somewhere to go and I have to wake her up.  She really only wakes up that early because I give her Prilosec while she is sleeping and she will wake up about 30 mins later.  Then she will fall asleep when I feed her her lunch, sleep for 2 hours, and then go to bed about 12 hours after she woke up.  About once a week I try to let her sleep in without disturbing her...she will sleep sometimes until 11am, but then you can bet she won't be ready for bed until 11pm or later!  I just know she needs uninterrupted sleep every so often...don't we all!

When I went to make a bowl of cereal this morning I noticed that the milk Adam bought last night doesn't expire until Nov 9th.  There is no way that a gallon of milk will make it more than 3 days in this house with a teenager, BUT looking at that date really hit me...we will be home with a baby before that milk expires!  WHOA!

Here is B with a kiss:

What else is going on...I'm working on my "mom skills"!  I can cook, but there are some things I have no idea how to do and haven't ever had the time to learn before.  So far I've learned how to make gravy and homemade rolls.  I'm not sure what is next, but someday I'd love to love gardening...this won't be anytime soon though!  Now I just need to figure out what is next on the list.  Any ideas?  (none from you Adam...I'm sure he would insert a laundry comment)

C

Pics

Battley's new tooth made it before her brother!  She now has her two front teeth, one halfway in on the top, one on the bottom, and two on the way right beside that one.  She's been chewing on her fingers non-stop!  I give her Orajel to help since she doesn't like to put anything besides her hands in her mouth.

This is B in a Bumbo.  She is just now big enough to sit in there.  We usually put her in her swing beside the dinner table when we eat, but she can't see very well.  She's the only one allowed to put her feet on the table!  Ha!

One of our last doctor's appts was to the surgeon who did Battley's g-tube and Nissen.  The reason for going is to have them change out the actual plastic g-tube.  We have been going every 3 months.  I talked to the surgeon about scaling back how often we come to once a year since I am perfectly comfortable doing this myself.  I have actually changed 2 myself already...nothing to it.  We carry a spare g-tube everywhere we go just in case of an emergency.  If you have one and can't put it back in yourself, guess where you get to go?  The ER...NO THANKS!  So...hooray for crossing one more doc appt off our list!

C

3 weeks to go

Mr Baby Terhune will be here in just a few weeks!  His room is almost finished...almost, Adam...you still have some cords to move!

I am still feeling good except for some ferocious heartburn at night.  If the old wives tale is actually true that heartburn = lots of hair for the baby, then this kid will need a haircut right away!  Both of my other children did too!

Miss B has had a little cough lately.  We are just watching closely to make sure it doesn't turn into something yucky.  Other than that, she is doing very well!  I took her to the dentist last week and she has quite a few teeth coming in soon.  I've been asking her if she thinks her other front tooth or her baby brother will be here first.

Oh...the stroller!  I actually found a stroller while checking Craigslist last week that will work and is half the cost of the other stroller!!  Hooray!  We will buy it new since the one on Craigslist was missing some parts, but yay for finding a less expensive alternative!!

C

Lately

B is sleeping soundly while I blog.  Poor gal had a few immunizations this morning.  She is getting all caught up though...yay!

We have a week full of appointments this week...most of them early in the morning.  We are trying to get all caught up with everything before baby comes so that we can hunker down at home for a few weeks after he gets here.

I was sick all weekend and quarantined myself in our bedroom so I didn't spread nasty germs to Battley.  I actually missed her even though we were in the same house!  Ha!

Hmmm...what else is going on:

H is finishing up one sport in the next few weeks and then we are on to the next one.  I'm so proud of him...he beat his best race time from pre-injury this past weekend.  He wouldn't be happy I posted this pic, but he doesn't read this...hehe!

For some reason we forgot to check the mail on Saturday so Sunday afternoon I had a surprise in the mailbox!  I entered a contest on a friend's blog and won...my winnings were in the mail.

Now this is what I was supposed to win:

 

She sent some extras and some FUN bows for Miss B too!  What a way to perk up a sick weekend!  She started making and selling hairties and bows...oh, and on the side she is an architect!  So is her twin sister!  They are too cute!  She has been praying for Battley since we found out she has T18.  I never knew how inspirational she was until I started reading her blog...and yes, I read the whole thing in one day!  So I asked her permission to share her blog.  www.silentstubborns.wordpress.com

I hope you find it as inspirational as I do!

C

Oh...and for Tracy who posted a comment about the camera.  Adam says to tell you that we also have a video monitor that we got from Target for inside the house.  It is made by Summer.  You can see it on the pics I just posted of B's nursery.  The monitor allows you to move the camera back and forth so you could watch the baby and the pulse/ox.  Ours doesn't run over wi-fi.  It does interfere with it sometimes though.  H turns the camera off to listen to his ipod when he mows.  I can send you the model if you are interested.

The Nursery

The bunny that started it all...he's a little wrinkly right now:

 And the bunny that finished the whole room:

This lamp was made by a most special friend of Battley's.  The bunny's name is "Bumby"...he is the perfect finishing touch!  Everything in B's room...well mostly everything...has some special meaning or came from some special place.  It's perfect for her!

And I have to give Adam credit for the cornice.  He built it to hide the arched window...yay for handy guys!

C

Stroller & Stuff

So we are getting down to the end of this pregnancy...thank goodness!  Less than 6 weeks to go!  I have been doing some stroller research, which I will gladly admit sometimes included running down mommas and asking them how they liked their stroller.

We have 2 strollers now...both are just strollers anyone can buy commercially.  Since we now need a double stroller, which will be an investment, I wanted to make sure we get one that will last a good while.  My requirements are: it hold 2 infant carriers, it hold 2 children who sit up, it hold one sitting and one in a carrier, it has storage for all Battley's stuff, it is lightweight, I would prefer that if I am spending a lot on it that it also convert back to a single stroller for when it's just B and I, and most importantly it have a seat for Battley that can always face me.  The last requirement is HARD to find in a commercially available stroller...yes I could go find a medical stroller, but those suckers are heavy and probably 4 times the price!

So here it is:

 

It's called a Baby Jogger (brand) City Select (style) stroller.  It comes as a single and you add the parts to make a double.  Guess what?  It's NOT CHEAP!  But...it meets all my requirements and look at everything it can do:

 

So...here's where I need help: I'd like to find a used one that is in decent shape that I can buy.  If you don't mind, please keep your eyes open for me if you know of anyone/anywhere that may have one for sale.  THANK YOU!

Battley's room is finally finished!  I will try to post photos this week.

H started his first JOB this week!  I am so proud and just pray that we have instilled a good work ethic in him.  He is very excited to start making his own money...so am I!  My friend Amy and I had our first real job together (not counting baby sitting and working for family).  I will never forget when we realized that all people do not have a strong work ethic.  We would go home tired after working and ask each other why we were getting paid the same amount as folks who weren't pulling their weight...ha...good lesson to learn early on!

H is working but also doing something he loves...he's reffing soccer games.

My gal is fussy today...I'm hoping it's just a tooth!  Off to see what I can do...

C

Oh...I've posted twice today so read on...

One & a Half

On Sunday Battley turned 18 months!  Now when we are out and get the number one asked baby question: "How old is she?" I can just say One & a Half!

Not only was it her half bday, but it was our wedding anniversary too...6 years!  We actually got out just the 2 of us and went to eat!

So here are some statistics for Battley at One & a Half:

* weighs 13lb-6oz...you may notice that she has not gained lately...this is due to her being so sick and taking so long to get back on track...we are still working on getting her feedings down

* wears size 2 diapers, size 6 month clothing, and size 9 month jammies since she is so long

* has 2 teeth totally in (one on top and one on the bottom) and has a new tooth coming in very slowly on top

* loves reading, snuggling, bath time, playing, people, singing, and her daddy's beard

* not in love with riding in the car for too long or being ignored

* she is a night owl even though we have tried so hard for an earlier bed time...she would prefer to go to sleep at midnight and sleep until noon...we don't let her do this, but it's hard

* has 4 feedings per day of milk, one dose of Prilosec for reflux, one dose of coconut oil, one bite of baby food, and prune juice

* consistently uses the sign for milk when she is hungry

* has gone from ignoring toys to tracking them with her eyes and now reaching for them

* is working hard to sit up and can totally hold her own head up now

* loves her dog and her brother so much

* is Loved beyond words

She wore her birthday dress to church on Sunday.  If you have to look on the bright side of your child growing slowly, you can rejoice in the fact that clothing fits a long time!

C

Nanny 360

I have posted about this company before, but I am going to do it again because I LOVE their product and their customer service.

Way back when Miss B was a few weeks old we ran across this site online: www.nanny360.com

We ordered a camera for the car so that I can drive and see her since she sits in the back seat in a rear facing car seat.  Remember how we tried every mirror made and none of them worked well enough?  This was during the time Adam needed to go back to work so I wasn't going to have a back seat baby watcher any more.  For most kiddos you just toss a mirror up there and go, but NOT for Miss Priss...remember how she used to spit up before her surgery (always the fear of aspiration that could lead to pneumonia) and how she used to stop breathing?  NOT things you want to find out about when you arrive at your destination!  Basically I was going to have to stay at home with her all the time if I didn't find a way to keep an eye on her in the car.

This product has literally been a lifesaver for us.  We wouldn't be able to go to doc appts, therapy, anywhere!  And let's not even get in to the emotional side of what this product has done for me...I am not sure I would survive staying home all the time...I like all you people too much! 

So why do I post again???  Mr Baby Terhune will soon be riding beside his big sister!  This company has amazed us with their awesome customer service!  We are now the proud owners of a 2 camera system so I can see them both!  Woo-hoo!

And just a few of my favorite parts of the camera for us:
if it's raining I can turn the volume up and pay closer attention to the road because I can hear her breathing
it's COLOR during the day...great for making sure your baby isn't turning colors (this isn't a joke...it's a real thing that used to be a major issue for us)
it works in the dark when even a back seat baby watcher can't see!

This camera works inside your home or in your car...HIGHLY RECOMMENDED by the Terhunes!

C

No News

It's that time again...I'm getting calls and texts saying I haven't blogged in too long.  I have NO NEWS...none!

Let me invent some:

* coconut oil is going GREAT

* therapy is good

* Battley is feeling great

* 7 weeks until baby

That's all I've got!

C

Clips

A few short videos of B and updates on Coconut Oil...

having a bite of applesauce in Speech Therapy

and doing some more reaching on her own

 

We have been doing the coconut oil for a week and a half now.  I can already tell a HUGE difference in the amount of time Battley will spend focused on one thing now.  Friday I will increase the dose to 1/2tsp per day.

C

Coconut Oil

After doing some research and consulting with all our docs, we have decided to try giving B a dose of Coconut Oil each day.  Some of our T18 friends have tried this and have had great results with more advanced talking/babbling than they have had before.  There doesn't seem to be any actual research supporting this, but there is a lot of chit chat about using coconut oil with people who have Alzheimer's.  Here is a link to Rebekah's page that talks all about their experience with it: Rebekah

We gave B her first dose on Friday.  It's just an experiment...we shall see!

Here is a quick video of B I took today at the DMV.  She is working so hard on her reaching!  A few weeks ago she wouldn't lift an arm to do this!

What were we doing at the DMV??  H got his driver's permit!!

And a little pic of B checking out her bro...the love!

We have an appt early tomorrow morning for a swallow study.  They will feed B some special food that will show on an x-ray and watch to see what she does with it.  Our hope is that she swallows it and it goes down the right way with no choking or gagging.  If this happens we will work on some more bites of food in speech therapy.  I wish I could go in with her, but since I'm a preggo I can't.

C

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

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

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

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 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

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.

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

Milk Milk

B and I have been busy, busy, busy!  We had a total of 4 doc appts last week.  One of those appts was for shots only.  She had 3 at a time this time.  By Saturday morning she was running 102 fever!  Luckily we have just found a pediatrician with an after hours clinic!  So off to doc appt #5 we went on Sat morning.  You never know what kind of doc you will get when you are just seeing the person on call...by this I mean there are docs out there that give us the brush off because she has t18...they don't care to see us...not sure why, but it is what it is.  I prayed the whole way there that this doc would be accepting.  He could not have been nicer!!  Seemed B had a reaction to the combo of shots and all was better by Sunday afternoon!

Today my gal is napping peacefully while I type.  She had a great first feeding!  This infant formula is working so much better!  I spent most of the morning on the phone between our insurance company and the compounding pharmacy...some days I really feel dragged down by this and just want to cry, but today worked out in the end!

We are switching back to a compounded version of Prilosec instead of the kind you mix with water at home.  It's just one of those Momma gut feelings that I know will work better for her.

And on a somewhat random note, I just want to share about one of my loves in life:

When I was in college, H and I would listen to a radio show in the mornings called Kidd Kraddick in the Morning.  I love these people and they feel like a real part of our lives because we have listened for so long.  It is broadcasted from Dallas...no where near us, but wherever we have lived we have always found a way to listen.

One of the things I always knew about Kidd but didn't really understand how special it was until recently is that he has a charity called Kidd's Kids.  Once a year he takes a group of kiddos who have terminal or chronic medical conditions and their families to Disney.  Sounds simple enough but I never before Battley was born really thought about what this probably means to these families.  These are people who have maybe had one parent give up their career, probably don't have extra money because of their medical bills, it may be just downright hard to haul all the medical equipment they have, or they get left out because they are different...I could go on about possible reasons these families have for not being able to do a vacation.  Kidd's Kids actually finds a way to get these kiddos on a plane and makes sure they can really enjoy a week of no doc appts and just loving Mickey.

So, Kidd passed away at one of his charity events over the weekend.  We are feeling pretty sad about it around here.  I suppose I am sharing because I feel strongly that this is a great mission and I hope that the rest of his team can keep it going.  Check it out here: Kidd's Kids

C

Solution???

We switched back to B's infant milk on Tuesday.  Thursday was our GI doc appt.  Things seemed to be going much better by the time we made it to the doc!  Sooooo...we think we have found the culprit!!!  The pediatric formula B was using has a vanilla flavoring added to it.  This increases the OSMOLALITY of the milk.  It's a new word for me.  I had to Google it when we got home.  Basically we think that if we use an unflavored milk it should solve the problem!  I am so excited and thankful for this discovery.  We are already able to give her her milk at a more normal rate and she seems happier and more comfortable!!  Thank you all for your prayers!

I also discovered another new word this morning.  Photophobia.  It is something another t18 friend has been diagnosed with.  B is SUPER sensitive to heat and light.  When she is in light that is too bright she closes her eyes and often sneezes.  We cover her eyes even on the way to the car in the driveway.  She also has a blanket we use as an extra sunscreen in the car.  It looks like B probably has this photophobia which can cause pain when her eyes are exposed to too much light.  Yay for figuring things out!  It can be hard to guess what is going on with your child when they can't talk to you with words...thankfully B is super in tune with her Momma and is so good at getting her point across!!  I will be extra careful now with those sweet eyes!

Happy Friday!

C

Phone pics

I really have no news to report...B's stomach issues are about the same.  We saw her palliative care doc today and got a few new ideas.  I am just waiting on the GI doc to call me back before we move forward.  I don't think I've done us any favors by trying to be positive with the GI doc previously, so today I tried very hard to be a Negative Nancy to get the point across that it's not a good situation and we need a solution. 

Every few weeks Adam will show me something on his phone and I will discover that he is hoarding pics on his phone that I've never seen.  Here are the latest findings:

Pic of me and my #1 girl on the porch at the Fryemont...vacation!!

Mac:

And Zeke got to take a little trip without Mac this weekend!  He loved it!  H sent me this pic from the trip home:

 C

Tot Collar

The progress has been slow, but it has been PROGRESS!  Miss B's stomach is getting better each day!  We are all exhausted from this crazy, wacky schedule.  Hopefully we will be back to a regular schedule next week!

The Tot Collar came in.  I have a pic to post from her PT session this week.  She did NOT like putting it on but doesn't seem to mind it once it's on.  Her neck did exactly what it was supposed to do the second it was on!  She needs to wear it as long as she can tolerate it and I have my eyes on her every day.  I have very high hopes for this.

We are getting ready for school in a few weeks...ahhhhhhh!!!!!  I am SO not ready for this!  My baby is going to High School!!!!  And will be getting his driver's permit next month...ahhhhh!!! 

Here is a little pic of Battley snuggling with her daddy one night:

C

Keep the Prayers Coming

Thank you so much for all your prayers.  I think things are looking a little better after this weekend!  Praise the Lord!  She is still having some issues with gagging, but the bubble problem seems to be much better.  It's been a rough schedule and we have stuck tightly to it...maybe this is just us getting ramped up for being up all night with a new baby??

If you're wondering how we did this:

5:30am - dose of Prilosec

6:00am - dose of Karafate

7:00am - milk and water with gas drops and dose of Flagyl

11:00am - dose of Karafate

12:00pm - milk and prune juice with gas drops and dose of Flagyl

4:00pm - dose of Prilosec

4:30pm - dose of Karafate

5:30pm -  milk and water with gas drops and dose of Flagyl

9:30pm - dose of Karafate

10:30pm - milk and water with gas drops

 

We brought out the feeding pump for this last feeding because she was asleep and we thought it would be easier on her tummy for the milk to be slower.

 

That's it...there is no other news here except for sticking to this schedule!

 

C

Prayers needed

Battley is still having stomach issues.  I spoke with the doctor this afternoon and we have another plan (plan #45 it feels like...ha!) to start tomorrow.  Please pray that it works or we find a way to resolve this for her.  I appreciate your prayers so much!

For Net...baby and I are both doing well.  I have been so busy lately that I honestly forget that I am pregnant sometimes...that is until I try to get up off the floor!  xoxo

C

Sunday update

It is that time again...time for me to post because you are all checking in on us to make sure we are here.  B and I have been SUPER busy with bubbles...I wish I could say that this was something fun, but it is not.

After a GI appt we decided to change her reflux medicine from Prilosec to Zantac.  The goal was to step down from the Prilosec, use Zantac for 6 weeks, stop the Zantac, change milk in a few weeks (back to the Boost), and then add a vitamin.  The plan was in action for 2 days before we realized that it was not going to work...AT ALL!  We changed back to Prilosec quickly.  Poor B has bubbles in her stomach with almost every feeding that take a long time (sometimes over an hour) to get out.  They hurt her poor stomach.  I have tried everything I can think of to make it better.  We will call the doctor again Monday morning to see if she can think of another route.  

Once the bubbles are out of her tummy she feels great.  During those times we have been busy with doctor appointments (B, H, and I), hauling H to his practices, pool time, and a few very small house projects.

I just ordered this for B:

www.totcollar.com

It's not super attractive, but she does have torticollis and this should help.  She will only wear it at home for a few hours each day.  It's not bad at this point so this device should correct it quickly.

She also has a new positioning device.  They have this same piece of equipment at therapy.  There are tons of different ways to use it...we have had fun figuring out all the ways that work for us.  It's called a Tadpole and made by TumbleForm.  Here is a pic of some of the pieces: tadpole  We have a few more.  Battley's awesome Physical Therapist helped us order one...this is one of those things that, at least for me, isn't common knowledge...I would have never known we could get our own or where to get it.

B is also working on having her immunizations!  This is something we never thought was important before, but certainly a must do now.  She has had 3 so far and all have gone well!  Yay!

Oh...the new rug!  You won't believe this!  First let me show you a snippet of our rug in the living room:

It's not like I go around taking pics of stuff in our house so that pic will have to do.  I love this rug...it's a grasscloth with a wide cotton binding.  It is AWFUL on your feet!  We always wear socks or hop quickly to the sofa...haha!  It basically makes our living room unusable for playing on the floor.  

The company I used to work for GAVE us a piece of carpet...well, I should say they gave Battley a piece of carpet for her living room!  Can you believe that?  After all they have done for our family, they did that too!!!  They also put a pad on it and bound it for us!  So...I'll have to work on a pic of it all together, but here it is when we rolled it out...I was so excited to walk on it with bare feet that we didn't straighten it out:

It's wonderful!  Battley loves it too!

My goal for the next few weeks is to take care of the next issue in the living room: the front doors.  We need shutters or blinds for them so that we can use this room more...remember my gal doesn't like bright lights.  Hopefully this will be easy!

Just a few random pics:

And finally a few blogs I'd like to send you to:

* This is a friend who could really use some prayers this month...she has 2 babies in Heaven both born in July.  Her baby boy had T18.  She doesn't update her blog often, but please pray for this beautiful woman as she faces her hardest month.

http://kinseygracethompson.blogspot.com/

* A former customer of mine is having a sweet baby boy very soon.  He will need heart surgery shortly after his birth.  His parents are living away from home during this...which is something I can't even begin to imagine.

http://babynolanwilliams.blogspot.com/

C