Wordless Wednesday-May 14, 2014

Wordless Wednesday 05/14/2014-CPaware

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...

Wordless Wednesday-May 7, 2014

:)

Support!

     I will tell anyone, Kerstin has so many moms and grandmas out there.  I often think about "Lily Owens" from "The Secret Life of Bees".  By the end of the book and movie, Lily has found so much support from her former housekeeper now friend and the Boatwright sisters, that she feels she is the luckiest girl in the world to have so many "moms".  Kerstin has her beat!!  It means so much to have so many caring women in our lives.   Yesterday, I even posted on Facebook, how it means so much to receive invaluable support, advice and prayers. Post here.  That means so much more when it comes from women, especially older women that truly understand what we younger women and moms are dealing with. 

     Kerstin has motherly/grand-motherly figures seems like wherever we go!  She has an aunt, Regina, that will tell anyone that, "Mattisa gave birth to Kerstin but, I'm her mom!"  She has been supportive in ways that could take a blog post or two to explain.  Kerstin loves her T-Gina!  I have another sister, Joan, she's Kerstin's and my go to for anything medical especially after hours.  We love her for that, even though Kerstin seems to be annoyed by her sometimes.   I know there's divine intervention when you least expect it.  My sisters were lead into areas of higher learning because of their interest but also because it would be needed in our family.  I am eternally grateful for them and their knowledge.  When I don't know what to say or do in some situations, they step right in and on time!

     When Kerstin has gone to school over the years, there are so many motherly figures.  Not all the women we've encountered have been kind but, this is NOT about them.  We have had some tell me on cold days, "Make sure you have Kerstin wrapped up."  Or, "Make sure Kerstin has on her hat and gloves..."  I've even been called some days with her at school moms telling me "Don't bring Kerstin to school, there seems to be a virus going around."
Taking her to therapy, her therapist know that she's going to have her nails polished and when she doesn't, I get "Why aren't her nails done?"  Leaving me to explain that I've usually taken the polish off late the night before and just hadn't re-polished yet.  

     Cannot forget about her "grandmas"  and "aunts", that are not even related...my moms friends, always asking how their baby is doing.  They always send encouraging words via my mom to me, "Tell Mattisa to hang in there and be strong."  Kerstin has love from every corner of this country it seems, from California, to Texas, to Michigan, to Virginia and beyond.  THANK YOU, from our corner in Alabama!

     All of your support does not go unnoticed!  It means more than I can began to explain!  

     So, to all you supportive women in our lives:

"I don't tell you often enough how much we appreciate the time and the care and the love you give us.  But today we want you to know how special you are and that we will always remember everything you've done for US!"

We appreciate YOU!!

THANK YOU,

Wordless Wednesday- April 30, 2014

A Disability does NOT equal clueless!

On Monday, April 21, Kerstin had a follow up appointment with her neurologist.  His office is at Children's Hospital.  I am the kind of mom that always talk to and explain to her what her appointments are all about and where we're going for the appointment. 

So, needless to say, Kerstin knew all weekend that she was going to Children's Hospital!  Monday morning comes and she had much attitude!  No good morning smile, she barely looked at me.  The whole time, I'm talking to her, telling her that we have to get ready to hit the road for her appointment.  She just looked at me!!!  PLEASE do NOT think that just because a person has a disability  they do not have feelings or understand what is going on around them!!!

I had to slow down and talk to my little lady about her visit to Children's... I promised her that it was only an appointment and that she WOULD be coming back home.  Her mood lightened almost immediately!

So, a few hours later when we arrived at the hospital parking garage...she became startled.  I guess the fact that we were actually there, again.  This was our first return since we left Thanksgiving Day 2013.  Kerstin knew exactly where she was, and her mood changed once again.  

APPOINTMENT:

Kerstin has been having seizures, more than her usual.  These "breakthrough seizures" were happening without fevers or sickness.  They are called so because they can happen at anytime, for any reason even when on an anti-epileptic drug.  Missy is getting bigger, she's in a growth sprut and the lower dose had become ineffective for her.  We have an increase in seizure.  


Also, Kerstin's mommy, is about to be in contact with some people about a "Seizure study". (More info later)

Leaving the hospital...Kerstin was a very happy little girl!!!  She got to go to Target and come back HOME!!!

Kerstin with some of her cousins!  Easter 2014

Her cousin's hat..she said Kerstin would look "cute" with it on!

The day was long but, FUN!  Easter 2014

ALWAYS remember!!!

More info: Kid's Health 

Ten Years with Seizures.

Usually most people equate April 15 with taxes!  I did but not any more since April 15, 2004!  That is the day Kerstin had her first visible seizure.  It was one that won't be forgotten!  

I guess you're wondering why I said "visible".  Her neurologist had discussed that because of her diagnosis of Cerebral Palsy, seizures could take any form.  The majority of her seizures have be febrile, she does have clusters, and absence, she has had her share of tonic-clonic.   This night, Kerstin's seizure came on strong and furious...it was a grand mal or tonic-clonic seizure! 

• A grand mal (or tonic-clonic) seizure is when abnormal electrical activity occurs over both sides of the brain. These seizures can cause whole-body movements and loss of consciousness. After a seizure, kids and teens may be confused, tired, or have a headache. These are managed with medications and, sometimes, a special diet or a device that stimulates a specific nerve. ~KidsHealth.org 

Seeing her laying there, it seemed like she was looking through me, like she was there but not totally.  Nothing I could do would stop it and at the time she was not on Diastat.  If you know me, you know what I did...called my sister!  After the seizure didn't stop after a few minutes, we took her to the ER.  She ended up being hospitalized for a few days.  

This lead us on yet another journey...more MRI's, and EEG's.
Kerstin would be placed on seizure medicines, and under frequent visits with her neurologist.  

I think it was the Fall of 2004 when her doctor wanted to do an in office sleep study on Kerstin to check her activity while she slept.  One attempt did NOT work because my daughter is such a sly little girl, she would not fall asleep, even after she was given the "sleep aid"...as soon as we pulled away from the office she was asleep. 

 So the next attempt was successful.  I got to sit in a huge rocker recliner and hold her while the test was administered.  We had fair warning that the appointment would last about 3 hours.  It really did.  Kerstin also had a seizure during the test, while I was holding her and I didn't even know it!!!  

At times it seems like she is doing really well, then they seem to come almost back to back.  There is always a time I can almost guarantee that she will have at least one seizure and it is around this time of year.  It is so eerie, but since 2004 she has had at least one seizure on or near April 15!

Case and point, she had one on April 14, 2014 at 3a.m. I made a Facebook post to talk about the eeriness of the April seizures.

We will be traveling those two hours one way on Monday to her neurology appointment...another update coming soon.

More to come...