My thoughts!

I guess I will "race-bait", if you want to call it that. Or, state the facts, voice my opinion, about what has been going on lately.
The election and re-election of President Obama, and as of late, the Zimmerman Trial has clearly shown that we do NOT live in a post-racial American society.  Yes, we are making strides to make sure EVERYONE is treated as equals and with respect, but we are not fully there.
As an African-American/Black woman I have never said that all white people were or are racist, that would not be fair.  I would love it if all black people were not considered lazy, ignorant, violent, criminal and angry--I am neither!
I would hope that the white people I consider friends and that have called me a friend wouldn't think I was a racist that I race-bait because I speak from experience about the inequalities we, as African-Americans face each and everyday.
Please don't think I'm stupid and angry because of my opinions on social, financial and political issues.  I am far from stupid!
I am one of 6 children, 5 living, raised by a single mom.  I can remember my mom talking to my brother before he would leave home just to hang out with friends and enjoy life, her telling him where to go, where not to go, how to act and what to do--just because he was young black male.
My mom, raised us to work for what we want, to be respectful and responsible, and to follow the rules/laws. We are all over 30 years old and none of us have been incarcerated.
So, am I angry? When I'm presumed ignorant, lazy, racist, stupid or criminal! Again, we are not post-racial and I'm not stupid! Just like so many, I just want a better life for my family!

More to come...

"It's something on Kerstin's stomach!"

As you all are well aware, Kerstin had her g-tube place back in March.  While she was in the hospital post surgery, I sent a text of her stomach before and after to our family ( it's also the one I included in a previous post ). So,  I have a very curious niece, that's 3 going on 33!  Her mom had told me a few times that  my niece would get her cell to look at Kerstin's picture every night and say that the doctor's had put "that" in Kerstin's stomach so that she could get her food.  Clearly, her mom really explained things to her, in an age appropriate way.  It became clear to me the other day that she either didn't believe her mom, or she needed further explanation, or that she finally got to see Kerstin's stomach in person, and thought she would get the full story from me, the mom.

Normally, when I give Kerstin her boluses, I do it discretely, since this is a personal and intimate process with me either having to lift her dress or her shirt to get to the 'button'.  Relaxing at home during summer break, enjoying a day at home with her cousins...Kerstin managed to pull her shirt up, exposing the port.
My niece being, curious little person, saw this and came to me and said, "it's something on Kerstin's stomach!"  I explained to her that it was Kerstin's "other belly button" and that is how she eats now. She wanted to know why because Kerstin has teeth too, like her.  Again, I explained, that she does, but she could no longer eat by mouth and that her food went directly to her stomach.  She smiled and sang my little feeding song that I sing to Kerstin at the start of her boluses: "It's going down, down, down, into your tummy, tummy, tummy!"

Yes!  Children are curious, they want to know what's going on in the world around them.  We have to be ready and willing to explain to them the things they are asking, age appropriate, of course. I believe that if we gently explain to our little ones that we all coexist here and that we all have different abilities, things would be better for all. Who knows?  Maybe then we won't have so many children staring at children and adults because they may be in a wheelchair, walk with a limp, wear glasses, talk a little differently, or have to eat from a feeding tube!

More to come...

The weight is...

UP!! Thankfully!!  My little angel was weighed again at her follow up g-tube appointment on June 3, 2013.  At that appointment she was up 9 lbs from March 30.

June 3:  We were at Children's of Alabama once again, meaning we've made the 123 mile one way trip for the 9th time since February 12.  This is the day mom gets more hands on training on her tube, the port, checking the water in the balloon, how to change it, what to do if it happens to come out...
I was a bit nervous about seeing her belly without the port, I'm not going to lie, it was a bit uncomfortable seeing her lying there with this little hole in her stomach.  ( No pictures, I couldn't this go round )  Now, every two weeks, I need to check the balloon to make sure it has 5 mL water in it. If it doesn't I need to add water to it.

Though, I'm very thankful for the weight gain, we've still been having issues with feedings and at times, her keeping so much of the formula in/down.  We are striving  and will press through those, along with the sleep deprivation I'm having because of my little one being awake most nights at 3 a.m. Just one more thing we will have to press through.

More to come...

Feeding Woes

Hard to believe it has been two months since I was told that Kerstin would have a feeding tube placed, to safely feed her and to aid in weight gain.  We have not had a weight check since it's been in place, but it is obvious she is finally gaining weight. Even after the ups and downs we've faced since she's been using the tube.

Since having the tube placed and we started her daily boluses of 1 full can of Pediasure 1.5 cal with Fiber four times daily with a 40 mL flush of water.  We still had the constant chewing, smacking her lips and dry heaving which sometimes lead to her actually vomiting.  Kerstin started to vomit so much, I took her to her pediatrician's office to make sure she didn't have a virus or cold. That weekend she was put on Pedialyte for the entire weekend.  We were in constant contact with her doctors and nutritionist at Children's about these issues either via calls or emails and even videos.  These concerns prompted her neurologist to order that she have an hour long EEG done to see if she was having seizures.  This meant another trip of 124 miles one way to get the test done.  This trip has been made 7 times in the past 2 1/2 months, with orthopedic appointments and surgery, casts changing, then cast removal, to neuro appointments and eventually another hospital stay and another surgery.

Got the EEG and  the tech told me that she did the chewing/smacking routine during the test.  A few days later, results showed that she was NOT having seizures during the study.  Thankful for that, but what is going on, causing her to do this?  Nutritionist decided and consulted with her doctor and nurse about a formula change.  Her Pedisure was changed to Pediasure Peptide 1.5 cal, same feeding schedule.  Still not working  sadly. Now, nutritionist suggests that her feeding changes altogether! Really?  How so?

Kerstin will need to have smaller boluses through the day, 10:30 am: 120 mL of Pediasure Peptide along with 40 mL water; the same at 1:30 pm, 4:30 pm and 7:30 pm; she will also get an overnight feed using a Kangaroo Joey feeding pump, to run 10 hours overnight, that would start at 9 pm in order for her to be off the pump around 7 am to get ready for school.  The first night of use, my princess looked frightened at the sight of the pole and pump.  We had to explain to her that she would not be stuck, and that it was not an IV.  Told her that she would have her Pediasure going "down down into her tummy tummy.." ( our little sing song, while she's receiving her boluses ).

 The new schedule did not work very long,  the second night/morning, Kerstin started to vomit while the feed was still going.  I'm so thankful that we have been blessed to have great people in our lives and a sister who is also a nurse.  She told me to check with them again because with her having a bolus at 7:30 pm and going on her pump at 9 was possibly too much on/in her stomach.  The 7:30 bolus was dropped and things have been going more smoothly.  Granted, she is still doing the chewing/smacking, not as often.  It is my prayer that these instances will cease altogether.

We finally got a schedule to wean completely off of the Topamax.  I guess her neurologist wanted to see the results of the EEG before deciding to stop that seizure medicine.

We are on a journey!  We are fighters and don't give up easily.  The Lord is blessing us, Thankful for it.

More to come...

Wordless Wednesday

Casts off..

I wasn't sure if I really wanted to post these.  Miss Kerstin's casts are off...they came off on April 9.  Her doctor came into the room after they were taken off to exam her, he was pleased and stated, " Well, she looks good, no need for more casts, she's healing nicely, looks really good!"  I'm looking at her scars and thinking, "Really??!?"  I actually said that to him.  I'm happy he thought so, but me, being mom, found my daughter's feet really hard to look at.

I must say now, two weeks later, she looks good and is healing nicely.

Unexpected happenings...

Unexpected indeed!  I had every intention of posting an update on last week of Kerstin's casts being changed and her neuro appointment.  My, how things change.  Last Monday, we went to Children's of Alabama for two appointments and ended up being admitted and she underwent another surgery....all in the span of a week.

So, casts were changed on March 18, appointment went well, ortho doctor was please with her surgical sites, even though they were not a pretty site for mom to look at. Her casts can come off on April 9 and doctor cleared her to return to school after spring break ( April 1 ).


The following Monday, we are back at Children's for an appointment with Kerstin's neurologist and to have a swallow study done. This began the day that I won't forget for a very long time. Things went well with her neurologist, he changed some seizure medicines, so we were to start the process of weaning off one and increasing the dosage on the new one.  The day was a beautiful day, sunny, yet very windy.  We had plans to go to the appointments and get to the nearest Target and walk around, as her treat for being in the house so much, not being able to go to school and mingle with her peers.

 It didn't work out that way.  We left neurologist's office, went up stairs for the swallow study...Barium mixed goodness =((   My sweet girl did not pass the study!! I was so hurt, so upset, I didn't even know who to be upset with and why!  The team attending her study wanted my contact numbers to call me once doctors were able to look at her study.  I had no idea that by the time we left the waiting room and were walking across the crosswalk to go home, my cell would ring!! Urgent call!  The speech therapist stated that the study had been reviewed and that they needed to admit Kerstin to ensure that she was able to get the proper nutrition.  She wanted to know had I left the hospital because the doctors didn't think it would be safe to continue feeding her the way she had been being fed.  I lied!! The tears were burning in my eyes as I looked at my daughter, smiling and looking at the trees ( from the crosswalk windows), I told the nurse that we had left the hospital.  She was so patient and caring, she told me that she knew we lived a few hours from the hospital and she didn't want us to get home and have to return to the hospital.  I told her we would come back inside.

Here comes the whirlwind!  Once back "inside", as we're walking to the admitting office, I could barely see and I was so overcome with so many emotions...I could no longer control the crying!!! The tears and the sobs escaped, I knew I didn't want my sweet girl to see me like this, so I stayed out of her eyesight. The nurses, bless them, they couldn't hold back the tears either!  Not sure if someone told the 'clowns' to come visit her room, but they came in soon after she was admitted!

We were admitted, get this, her room this time, was two doors down from her room after her ortho surgery. Now, in come different doctors, specialists, anesthesiology  nutritionist, nurses...I had to get out pen and paper to write down names and titles.  The TV in the room has notes popping up to watch this video on seizures, watch this video on gastrostomy tube care... I must say they make sure you are knowledgeable about why exactly your child is in the hospital.

An IV is started to get fluids into Kerstin.  Later in the day, a doctor comes in to explain the first step they're going to take.  Placing my princess on an NG tube, then she would have and upper GI study done to see how things flow and to determine g-tube placement.

Day 2:  NG tube is placed!  Her nurse, Justin, was so thoughtful and caring!  He came in earlier to tell me that they were going to place the tube, and that he thought it may be a little easy on mommy if I left the room for the procedure!  My sister, whose a nurse as well, had warned me the night before, she said " I know how you are, and it can be a bit hard to watch it done."  Justin told me to go downstairs and get breakfast and the he and another nurse, Amanda, would keep an eye on her until I got back to her room.  They did, and when I reutrned my daughter has a feeding tube in her little nose. Hard for this mom to look at!

Day 3:  Upper GI study.  Determined that the NG tube was placed properly, Barium laced Pedisure was flowing in the right direction.  She was rolled from side to side, on her back, on her side and back again.
Room filled once again with doctors, nurses, neurologist, surgical team, anesthesiology   Yes, g-tube will be placed!

Day 4:  Surgery day!  One month to the date of her ortho surgery, my daughter is about to go for yet another surgery. So, we go down for the procedure...meet yet another team of really nice doctors and nurses, all confirming that "we're going to take care of Kerstin this morning,,,"  While enjoying a nice cup of coffee, I get a call to come to the desk, I quickly pour out the coffee, rush to the desk...Doctor is there, he says "surgery went well, she's in recovery, do you have any questions for me?"  I did. I didn't know what to ask first, can she get in the tub, once her casts are off?  Will she be in a lot of pain? Is this permanent? I have no idea how to feed my child through a g-tube!!! Dr. Martin, another reassuring person at the hospital, calmly answered my questions and told me that we were not leaving the hospital until I had training on how to, what not to, what to do if/when...

Day 5:  Only clear liquids via her g-tube, Pedialyte and water, starting with smaller bolus feeds and increasing at each feed.  Her midnight feed  was not pleasant, she was so uncomfortable and grouchy.  The numbness was wearing off and her belly was full to the rim with clear liquids. It took a while to get her settled, and later in the night/morning more of the strange lip smacking from Missy.  Took a video to show her doctors.  Later determined that she was in fact having a mild seizure. Neurologist informed me that when children start growing and meds are changed, if the new one is doing it's job you will see mild seizures in your child. He also said that if the child does not go into full convulsions, then the new meds are working properly. Catch 22? Not sure!  He told me that as a parent you don't want your child to have seizures at all, TRUE, but you also don't want them so medicated that they are non-responsive and out of it most of the time, TRUE.

Day 6:  Bolus feeds of Pediasure...mommy gets g-tube training!  Kerstin is able to get bolus feeds of Pediasure and they will be introduced slowly, increasing at each feed.  So far, so good.  Thank God!  It is also day 6, when mommy has to get away to the meditation room in the hospital.  I'm Thankful to God, that surgery went well, I'm also thankful to Him that we're going to make it through this too!  So, we get a visit from her surgeon's nurse, she is here to train me on some basics, and what to look for, what to do if it pops out, how to take the extension tube off, how to lock it, etc...  Putting the extension tube on, made me feel so uncomfortable, she reassured me that if I gently hold the "button" and feel the little click, it will not hurt Kerstin. Okay!  More training to come for mommy...I have to know how to replace the tube; Pray I can handle it.

Day 7: Easter Sunday! How did she do overnight? Fine! We are able to go home!  Kerstin was so happy to see the trees and traffic, I thought she wanted to watch her TV as she normally does when we're riding...she was looking out the window with a beautiful smile on her face.  No more hospital walls!! We are heading home!! The view was nice from the 10th floor of the Benjamin Russell Hospital For Children, but it was time to go!

We did go on strolls just to get out of the room, nothing like being outside of the building altogether!

After 7 days 6 nights in the hospital, we're back home, trying to get used to new routines!  I know with all my heart we will make it!  Things will get easier each day!  This is all going to be for the best for Kerstin.  She will thrive, she will grow stronger, she will be just fine!  I thank God, for all of the doctors, nurses, and everyone we came in contact with.  They were really nice and caring, so understanding and patient. It made our stay more tolerable.  I've even nominated some for the hospital's Daisy Award, hope they're considered!