45 weeks

I will be a little early this week instead of a little late!  We will celebrate 45 weeks with Battley tomorrow!

There are LOTS of exciting things going on around here!  I'm a list maker so we will just do a list:

* We ALL made it to church last week!  It went really well!  Next goal: Bible Study and church...stay tuned.  Not only did we do that, we went to eat lunch together IN A RESTAURANT after church!  It wasn't a first, but it is a big deal since we have only done it once or twice.  

B in her big girl bow all ready to go...pics taken 5 minutes before she spit up and 5 minutes before we were supposed to leave...haha! 

* Our doc appt on Monday: wonderful!  

We are going to see a plastic surgeon about correcting her cleft palette.  As I am writing this I just got an appt text...it's at the end of Feb!

We are weaning off another medicine!  She's been off half of her phenobarbital since Monday and is doing fine so far...BUT not only is she not showing signs of a seizure, she is so super alert and happy!  Please pray that we are able to ditch this one all together and don't have to worry about seizures!  

She did a barium swallow test.  I didn't really know what to expect.  We went to the xray room and they sat her in the cutest chair...

Then they FED her off a SPOON!  What!  A SPOON!  It was so cool to watch:

She swallowed a small amount and spit the rest out.  This was good, but the best part is that she didn't choke or aspirate!  So...we have some work to do on the therapy side and will do this test again in the future!  Yay!

I commented on what a great seat this was for her.  Guess what...they ordered us one!  I am super excited to get it...it's apparently called a feeder chair.  I have more research to do.

* We still have our GI appt on Friday.  I am VERY ready for it.  Some days when B is having issues going to the bathroom and spitting up I just feel so helpless and sometimes I cry.  It's hard to watch her be in pain when I can't help.  PLEASE pray we get some answers Friday.  Thank YOU!

* We have been doing our home therapy twice a day while we wait to be actually accepted into the place we are going to do therapy every week.  We will of course continue to do this after we start but we are getting excited!  It shouldn't be long.  Battley likes the exercises she does.  She even held some toys this morning and put one in her mouth.  This is actually something on the list they ask about her doing.  Last week I had to say she hadn't done it!  Yayyyy!  I almost hit my head running for my camera to get this pic.

* I am always asked "what can I do" and I never know what to say...I thought of something!  The only thing that is really hard for me to do with Battley is shop anywhere that you would use a cart.  I prefer to leave her in her stroller (germ free bubble area) especially since it is flu season.  When I have H it's easy, but we don't do any big store trips together now that he is on crutches.  SO...I need shopping help!  I don't "shop" anymore...what I mean is browse any stores.  I go...I see what I need...I get it...DONE!  So all I need help doing is locating these items so I can go get them!

rings like the ones in the pic above with some thickness to them (better for grabbing)

a rattle that is super light weight

That's it for now, but I'll post more if I need something else!  Thank YOU!

* House update: we have painted, re-caulked, cleaned grout, organized, cleaned, packed up, put away, thrown away, and "staged" the house!  Here's Amy helping me clean the grout!  She's the best!  We actually used her steam cleaner, but this was a Pinterest test...it worked.  Only in our house would you use an old syringe to do house work!  haha!

So, we were all geared up to SELL and we decided to run the numbers one more time...long story short: you will NOT see a for sale sign in our yard!  We are staying!  Re-financing!  We close this week. 

* In addition to our therapy and of course all the other stuff, we have 2 goals every day:

1.  go on a walk

2.  get B to nap in her crib...she has always been a cat napper...you know 15 min naps here and there.  Well...no more!  We are doing well so far.  It's not at the same time each day, but we have been doing well with this.

About the stroller...we have a jogging stroller that has to be returned.  I kept noticing the front wheel wobbling and asked Adam to fix it.  He had me drive past the house 15 times so he could see it.  I really think he just wanted the neighbors to have a good laugh.  Of course it would never do it when he was watching.  Last weekend I sent him this:

So...we haven't accomplished #1 for a few days now.  It will be swapped this weekend!

* I have a new friend with a daughter that attends a day school (for kiddos age birth through 6 years that have special learning needs).  I don't have much info just yet, but we are going for a tour to see if Battley would benefit from going there in the future.  The waiting list is long (they told me 3 years this morning), but as you know when God wants something to happen He makes it happen.  This is going on my prayer list NOW. 

I'll leave you with a pic of B working on her head control...sheesh, she is cute!

C

44 weeks

What a day!  We started the day bright and early with a therapy evaluation.  I can't tell you how excited I am to start working with someone who knows what they are doing!  B and I do her "stretches" every day, but these ladies (a physical therapist, occupational therapist, and a speech therapist) worked Battley HARD!  She was SO tired when we left.

I sent this video to a friend with the title "Battley chewing bubble gum" a few days ago...I think it got passed around and some of you thought she was actually chewing gum!  She's not.  It does show her chewing action which is SUPER awesome because it means she wants to be chewing food.  Hopefully we will get to work on that in the near future.

We have a doc appt on Monday morning.  I have a long list of topics to talk about with our doc.  Right before our doc appt, B is having a swallow test.  This should be exciting to see if she can SAFELY have any food in her mouth now.  We expect that we will have her palette corrected in the future...which is a topic on the list.

Then next Friday we have our GI appt!!!  Woo-hoo...C doing some more cartwheels!  I am hopeful that we will get some answers and a date for a gtube.

Had to post a little video of H and how far he has come since his surgery...maybe I will post a post-surgery-all-drugged-up video first:

I have lots of these..this was HOURS after surgery on the way home!

And yesterday...he's been working SO hard:

And today is also someone VERY special's birthday....

HAPPY BIRTHDAY TO YOU

HAPPY BIRTHDAY TO YOU

HAPPY BIRTHDAY, DEAR MEANO

HAPPY BIRTHDAY TO YOU

...

AND MAAANNNNYYYY MOOOORRRREEEE!

C

43 weeks

43 weeks!  We got to sing Happy Birthday this morning a little late...it SNOWED here last night and we all slept a few minutes late!  

For my friends who don't live in Mississippi, it is a HUGE deal when it snows here.  Too bad for all the kiddos that wanted a whole day home from school...they just started late.  It's already up to 45 degrees.

What has been going on since I blogged last week?  Hmmm...

* Battley doesn't have hospice any longer, but in true awesome-Rosa fashion she has still been checking in on us!  

* B is being evaluated to start physical, occupational, and speech therapy over the next few weeks.  

* We have a few doctor's appointments in 2 weeks...including our GI appt!!!  Woo-Hoo!!!

A few pics and a video for you:

B working hard to hold her own head up...we work on this and other stuff every day:

Here she is the first time I have ever seen her try to reach for a toy...she is really starting to work on getting those arms to get them to do what she wants them to do.  She has mastered getting her thumb on both hands to go right into her mouth.  She has also mastered pulling her tube out in less than a second when I'm not looking...haha!  At the end of the video you can hear me telling her not to be sneaky.  That is what we call it when she pulls her tube out.

And as promised a pic of her bedroom in progress...we have a good way to go, but there is a crib!  Adam and I have been talking about letting her sleep in there soon since she is getting too big for the bassinet...she's 10lb 11.5oz now.  This morning I asked her if she wanted to sleep in there on Friday night (thinking if it didn't go well at least the person who was up could catch a nap on the weekend)...Adam chimed in and said she likes her bassinet too much...hahahaha!  Sweet daddy just wants her close by.  That is Adam's mobile from when he was a baby and Hayden's crib.  I'll do an official tour once it's finished.

C

42 weeks

42 weeks!  Oh my gosh...that's 10 away from 1 year old!  Whoa...that literally just occurred to me!

I have some new news...it's HUGE!  Really HUGE!  We have known about it for a week or two.  It's very bittersweet for us to share this.  Before I share what it is, let me go back and tell something else...

My friend that I met after we found out about B's diagnosis walked me through everything she and her family decided for their daughter.  We prayed about every decision and decided to bring Battley home with Hospice care like she and her family did.  If you are like me and don't really know what it is, it is a very interesting concept and approach to accepting the end of life and dealing with it in a peaceful way.  Check it out on Wikipedia: Hospice

So at 5 days old we were still in the hospital with B and preparing to come home.  Someone from our hospice company came to fill out paperwork.  Let me remind you that we were OVERWHELMED with everything going on and simply trying to take it all in and enjoy our time.  I was presented with papers to sign...still not fully aware of what all hospice was truly about.  Then it was time for THE PAPER (do you like how I do all caps to make it more dramatic?).  I was told to sign this piece of paper and not to date it.  I asked what it was...it was the piece of paper to discontinue services.  Without thinking I said something like, "Gosh...I pray I can sign this someday".  My comment was met with (I do NOT claim to remember exact words) "Oh honey...why would you want that?" (or something to that effect).  If you don't know me, let me just tell you what I was thinking...

CHALLENGE ACCEPTED!

I'm sure some readers are thinking "how rude!" but not me.  The person who said this didn't mean anything ugly I do not believe.  Let's put a pin in that for a sec...

 

We are being discharged from Hospice this week!

We are overjoyed that Battley is doing so well and we can finally see a future with her...it's truly awesome news!  But...you all know how much we love our Rosa!  We have 100% just enjoyed getting to know everyone who is with our hospice company.  They will all be missed dearly!  (Obviously the people we love so are the "Bitter" part about this great news being bittersweet)

Back to the comment for a second...isn't it just like us to accept what statistics say and loose hope?  To think we as humans have all the answers?  To not think, believe, and know that miracles happen every day?  It sure was a reminder to me that I am NOT in control!

So, on to a new chapter in our lives...

C

Battley LAUGHS

41 weeks

B is 41 weeks today!  We are enjoying our last week before H goes back to school and trying to get the house ready. 

During my research of gtubes I have scoured other T18 blogs that I can find.  Since I spend roughly 8 (at a minimum) hours a day feeding Battley, I thought I'd share some details of what and how she eats.  Maybe it will be helpful to someone out there some day...

Here is the formula B takes.  She's been on this since she was 6 weeks old.  It's higher in calories than breast milk or regular formula so that she doesn't have to have as much.  I think most regular formula is 20 calorie per serving.

We use the ready made instead of powder because her ng tube is a 5 french (very small) and we don't want powder to clog it.  I don't even know if they make this in a powder.

This is formula for 1 day.  Each of the large syringes holds 2 ounces.  Just for reference a regular size water bottle is 20 ounces and a coke can is 12oz.  B has a little more than 16oz in a day.  The medicine syringes on the side represent the doses of medicine she has in 1 day.  I left out 2 doses or Miralax, but you get the picture.

Her pump is a Medfusion 3500.  The syringes are Monoject.

We went for a stroll today.  Here is B all bundled up:

and here she is hanging out with me during lunch:

C