I Get it!

     This past Saturday, I was fortunate and blessed to be able to work at the local special needs expo.  I was able to leave Kerstin in the comforts of home with her aunt Regina watching her for the day.  So, not only was I working, I was able to get a little respite, much needed.  As always, when Kerstin is with her aunts, I check in to see how things are going with my little boss.

     Regina kept me abreast on what was going on throughout the day.  When the day was done, I called to chat with them and see if anything was needed.  During our conversation, Regina told me that being there all day with Kerstin showed her how busy a single day can be. This was not the first time she's spent the day with Kerstin somehow, she really felt the love of being Kerstin's full time caregiver.  She said it felt almost nonstop at times, by the time she prepped food, got the Kangaroo bag filled and pump ready then the medicines, it was time do something else.  Keep in mind, Kerstin's medicines are staggered throughout the day with her having to take some every four hours.  She said keeping Kerstin on schedule while doing laundry and other things, it felt like she would sit for a few minutes and have to go do something else.  

     "I get it, Mattisa!", to hear those words seemed exhilarating, because, someone took the load off me for a while and knew I needed it off!  I cannot explain to you how overwhelming it was to hear those words.  As parents of a child with extra care and needs, we often hear how special we are, how special our children are, and how it must be so hard.  Or, can you recall the looks of pity, "Aww, bless her/your heart!"? It is welcome relief when it is gotten.  It is understood.  

     We are in no way looking for pity, Kerstin is as bossy as they come! In fact, she was paid for having to be cared for and not the other way around.  How bossy is that?  I had never heard of the "babysitter" having to pay to provide a service! Kerstin, setting another trend.  

     Let a family member or friend know that you really get it.  "How can I help?" May not be answered because I rarely answer when it is asked of me, just know that understanding the flow of a single day and jumping in without disrupting that goes an extremely long way!  I'm thankful for the supportive circle around us, when things seem heavy, they load is quickly lightened. 


More to come...

Weight, what?!?

     The latter part of 2017 proved to be very busy for us.  In October, Kerstin had her g-tube changed to a gj-tube.  That was followed by a very unexpected stay in Children's Hospital.  However, since October and the continuous feedings she has been on a constant climb in pounds.  For the longest after getting the feeding tube Kerstin's weight had been fluctuating between 75 and 80 pounds.  She was healthy and her nutritionist was pleased with her progress.   

     Things were going well until they were not so good.  Kerstin started to have these smacking instances along with vomiting which would lead to gastro issues and her aspirating leading to aspiration pneumonia.  All of that lead to a few illnesses and hospital stays last year.  For the most part, and thankfully so, Kerstin has been pretty healthy with no major issues, just allergies lately.  

     The past few months, at various follow up appointments, whenever she has been weighed, Kerstin is no longer in a fluctuating phase on this feeding tube journey, she has been on a steady incline.  well over 90+ pounds.  Normally this may not be thought of as an issue but when you are immobile and assistance is needed for everything, that kind of sudden weight gain can be a bit much.  So, simple changes have been to her continuous volumes made with the hopes of keeping Kerstin in her range of 80-85 pounds. 

     We will see where these changes take us...

More water intake!  Drink up.

More to come...


It's happening so quickly!

Pump No More!

     After about two weeks of not continuous, overnight feedings, we talked to Kerstin's clinical nutritionist at Children's Hospital.  Since, she has been doing fine with only taking gravity boluses throughout the day, it is officially okay to discontinue her continuous feedings!  I am so happy and very thankful!  She is continuing to make strides and is doing well!  No more beeps in the middle of the night because she may be laying on the lines.  Don't have to worry about her accidently pulling the ports open and not being fed.  No more phantom beeps in the middle of the day...hopefully!  

     Yay for Miss Kerstin!  Another step on our journey of Growing With Kerstin! 

My sweet, silly girl!

More to come...

Georgia on her mind!

     Well, the weekend of July 11-13 has come and gone!  The weeks and days coming up to the trip, I became worried on how we would travel with Kerstin's wheelchair, luggage and that included a Kangaroo pump and the pole which it hangs.  Little did I know, the medical supply company would screw up her pump bag order, leaving us without bags for 4 nights the week prior to our trip.  

     I had to consult with my nurse sister, on how to rework Kerstin's feeding schedule so that she wouldn't miss the amount the she would have gotten overnight.  Turned out to be easier than I anticipated.  Not having to travel with the pump and pole, along with Pediasure, syringes, bags, and extension sets that we already had to carry.  The boluses turned out to be pretty easy, the adjustments were too.  

Kangaroo Pump/Pole

     Now, on to the fun stuff!  Kerstin has been a fan of the Georgia Aquarium since the very first time she went in 2007.  She was in love with all the aquatic life and her mom was in love with the delight in her eyes!  I'm sure every parent wants to witness their child(ren) doing or seeing something that they love.  

     So many animals to see, so many people!  It is my hope that one day soon, people will realize that people with disabilities are ever present and they enjoy doing things just like everyone else.  I say that because we constantly came across people that were seemingly unaware or just didn't care that there was a child using a wheelchair, trying to enjoy the aquarium just like they were.   

     First stop, the Dolphin Tale show, we couldn't take pictures or videos!  The show was beautiful!!  Kerstin didn't take her eyes away from the pool area where the dolphins and trainers performed.  On to the next attractions.  Tank after tank, we saw beautiful fish, otters, whales and sharks.   She was worn out but, she had a great time!  Here are a few pictures we'd like to share. 

Georgia Aquarium, Kerstin is on her way!

On our way in, an employee on break took our picture!

Whale Shark

She loves the Belugas! 

C O U S I N S

She got to see divers in action. 

Got to see an interesting parade through the lobby. 

Until next time...

More to come...

Kerstin: Unplugged

     So, something new on our g-tube journey!  Over the weekend, I woke up to a big shock.  Lately, I've been trying to wake up with bolus syringe and water in hand to be at her side before the pump beeps at 5:30 a.m.  Well, Saturday morning I pull her covers back and Pediasure is everywhere!!!! The medicine port on her extension set is open.  I have no idea how much she had eaten over night.  I am frantic!  I went ahead with her water flush and disconnected the extension that was covered in super sticky Pediasure.

     Apparently, Kerstin managed to open the port on her MIC-Key set.  The only thing I can think of is the fact that she has been moving around in her sleep a lot lately.  I am very thankful for that!  Also apparent, I need to make sure that there is a pillow over the line that come from the bag to the extension. 

     I told my sisters that I knew that the med port was closed because I always hold it down when I'm connect her pump line.  I am so happy that it was the entire button she managed to pull open or out.  I think it's safe to say, we've had an interesting weekend...we are on a journey.  I'm growing with Kerstin!

This show the extension set.  Med port is what she opened!!

MIC-Key or g-tube

     

More to come...

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...