Tuesday, January 28, 2014

Prayers Needed

Battley still has something going on that we cannot figure out.  She seems to be okay during the day except for teething.  At night she is waking up sometimes multiple times each night screaming with gas.  Please pray with me that we find the cause of this so she can get the rest she needs at night and won't be in pain.

She also has another front tooth coming in...boo!  Most babies get a tooth in a few days.  Battley takes weeks and it is miserable for her.  I really am praying that she gets a break from teething.  She has basically been teething for a solid year!

Adam and I need some rest...really.  Every night we get our kids in bed and then starts the mad dash to get in bed and fall asleep before one wakes up.  JM will go for a good stretch before he wakes up, but about the time we get B settled is when he wakes.  We are literally getting them in bed and ignoring dirty dishes, laundry, everything except sleep...just so we get a little.

I took B to a new ENT yesterday.  He spent a lot of time with us and we made a plan.  Step one of the plan is to have a sleep study done.  Battley has...very obviously has...sleep apnea.  This is totally different than the apnea she had when she was a baby.  She has always had sleep apnea.  We knew it was something we should address some day but we had to find the right doc first.  If you want to google it, look up obstructive sleep apnea.  Many adults have this.  So...it will be about 6 weeks before we have the sleep study done.  Add this to the prayer list.  We may have some tough decisions to make in the future...or they could be easy ones.

Lastly...she isn't sick but has some major sinus junk going on.  I'm using the nebulizer on her multiple times each day and trying to keep her home if possible.  

Thank you for your prayers!
C

Tuesday, January 14, 2014

Update

Battley did not start school.  Thank you for your prayers.  It became very obvious to me around 2am one morning that it was not the right time.  She started having bubbles in her stomach again.  We went through this once last Spring and seemed to find the answer by switching her back to her infant formula.  She is still on that formula now so we had to come up with another solution this time.  I am hopeful that we have found the answer...Miralax!

Since B had a Nissen (surgery she had along with placement of her gtube) she is physically unable to burp or spit up...that is the point of this procedure.  So if she has a gas bubble that bothers her, we have to hook her gtube up to an empty syringe and let the bubbles out.  She was having horrible gas pains that made her scream.  When we would hook the syringe up to let the bubbles out, we would basically have to unfeed her to get them all out and then turn around and feed her again.  It was taking hours!  I couldn't imagine sending her to school and asking someone to sit and feed, unfeed, and then feed her again.  Plus, who wants to go be social when your belly hurts?

We have been about a week with only a few small issues.  We are still working out just the right combo of formula and coconut oil to have her feeling 100% again.  

On top of this, she has been teething...2 molars are on their way in and they are not being nice to her.  I've had to use Tylenol, Motrin, and Orajel.  She won't put anything in her mouth besides her finger so teething toys are out. 

We are working hard on her torticolis (tilting of her head).  I will admit that some days I feel overwhelmed by my lack of time to dedicate to working on her strength.  So while I am not blogging I am busy stretching that neck.

I also went to check out a new chair/stroller for her.  I don't see myself using it as a stroller while I have 2 babes to stroll but more as a chair for now.  It will be customized to fit her.  We should get in in a month or two.  I'm so excited about it because it will hold her upright and give me 2 hands to work on other things.  Normally to sit her up I am using both hands, arms, and some other part of my body...not easy to do other stuff like this.  The only seats we have for her now are for babies and keep her back very rounded.  So that we don't cause problems with her back, she spends a lot of time laying flat when I can't hold her...who wants to do that all day?  

I did share a little of Battley's story at church last week and how God has provided Hope at just the right times.  They did video it so I will try to post it once I have a copy.  I really appreciate all of you who prayed for me and those who came.  I would say I loved looking out and seeing all the T18 shirts, but I could not see a thing from the stage!  

Other than not getting enough rest, things are going well around here.  My main focus now is to help Battley with her neck so that she can sit by herself for longer periods of time...she can hold herself up sitting for a few seconds alone now!  Besides that I am going to have to move JM to his own crib...boo hoo.  He is outgrowing the bassinet very quickly.  So far he isn't in love with his crib.  I have been reading online accounts of how moms did this while we are having feeding sessions in the night.  If you have a bright idea, send it my way!

C