Changes...again!

     It is rare that Kerstin has a visit to Children's of Alabama without something changing.  Change is good, right?  I skeptically say "Yes", when things seem to be going in a good direction.  So, we were back, for another follow up, our second trip in less than a month.  Cannot forget that she has another...in less than a month.  

     This was a follow up with her pediatric surgeon...g-tube follow up.  Beautiful day, beautiful weather (a bit warm, already).  I must say, that I am very thankful for safe travels to and from.  I told my sister on the way up yesterday, that it seems almost scary that I can drive those 124 miles one way and it seems like nothing now that it's been done so many times. The things we do for our little ones.  

     Happy to report that Kerstin is continuing to gain weight.  In fact, she has gained so much that we had to see the nutritionist again to make more changes to her feeding plan and schedule. 
Her current weight is 72.38 lbs!!! March 28, 2013 before her g-tube surgery, she was only 34 lbs!  I have previously vowed to myself, that Kerstin was NOT getting a feeding tube!  I had heard so many stories from other parents along the way, stories I won't even share.

     At her appointment yesterday, I realized that this surgery has saved my daughter's life.  I can't remember the speech therapists name that assisted with her swallow study March 25, 2013, but I'm thankful she called me and calmly talked me into coming back inside the hospital to have her admitted! 

     I was so scared and couldn't see for the tears that filled my eyes but, I'm glad we turned around!  I know her doctor, we see him every six months.  Dr. Martin was so patient and so calm with this antsy, nervous and confused mom, that he asked if I had questions and actually stood there while I rambled through questions.  I was assured that we would not leave the hospital before I had information and training.  That training came in the form of pop-ups on the room TV and one on one with his nurse. 

     Kerstin has gained so that her feeding tube was getting too small so she had to have a larger one.  She went from 14 Fr/1.2 cm to a 14 Fr/1.5 cm tube.  No, I have not changed a tube yet, it still seems a bit odd and uncomfortable to me to see that little "unnatural" hole in her little belly!  But again, I'm thankful that I have sister that is happy to put her nursing skills to work and change them for me.  

     Now, to the feedings, her overnight feeds have gone down from 300 mL over 10 hours to 192 mL over 8 hours.  Her water intake is gone up from 60 mL per bolus to 120 mL.  Her nutritionist suggested the new schedule/ rate change since she has gained weight, and needs to maintain where she is for a while.  She mentioned that it is somewhat unnatural to eat while you're asleep and that is when your weight is gained.  I think she will eventually work up to not needing the pump at all overnight.  Fingers crossed!  So, for now, she will have a very wacky schedule for a while.  One that I will have to get very used to.  As with everything we're gone through and had to endure, we always conform.  

Received some great products in the #UnivoxBox

One of those products used to write a note to my HERO!  #PenItFFwd

*Products received for free from Influenster, so that I could try and review them.*

More to come...

Weight...among other things!

Happy New Year!! This is the time of the year when we start seeing all the commercials promoting diet plans, exercise equipment,  quick weight loss pills, shakes, sprinkles, etc...  We've all seen them, and most of us adults are tempted to try them because we need to or just from the mere popularity of them.  Some of our children could even benefit from a form of weight loss that is healthy and for life not fad.

My little one is the complete opposite, and on a mostly liquid, soft or puree diet; we've been on a battle with weight for some time now! God knows I'm doing my best and will continue to do so.  It just seems so frustrating when it seems as if my best isn't close to being enough.  In my eyes and mind!  In all of this, I can say that she has gained 1 pound from her December check to the January weight check.  I am so thankful to God for that, it just doesn't seem like it's enough for me though.

 It seems that way because we've had to deal with the development of a pressure area on her rear.  Due in part to the weight loss and a bony prominence! You don't know the tears I've shed in light of this. We've had to go get the cushion in her wheelchair "feathered" and cut to have a softer spot.  Her position is changed every so often, she's kept dry...things I was doing and it still happened.  OT doesn't want her seated on a "doughnut cushion" because of the risk of pulling and causing even more irritation.

Through all of this, we're still prayerful and very trusting that tings will continue to work in our favor.  Kerstin WILL continue to gain weight, the pressure area will clear!  I am so proud of my daughter and love her dearly!  She is making great strides at work on her Dynavox...had to treat her to something from her fave store, Target!

Another day...another weight check...

Wow, it's really been a month?!?! Sorry, it's been so long!  I have bee working and praying, seeking ways to get my daughter's weight back up.  I am convinced now that it has to be the medicine she is on for seizures.

She had yet another weight check today and is down a few more ounces from September 9 =(   This is heartbreaking, especially when the nutritionist keeps bringing up "feeding tube"..surprisingly I had the strength to tell her out right today, " No feeding tube"!!!

I'm on a mission now, (1) to get my daughter on another seizure, one that will not cause weight loss and loss of appetite (2) find all sorts of pureed meals and recipes that are high in calories  and (3) GET MY DAUGHTER'S WEIGHT BACK UP!!!

More to come...