Sunday, July 28, 2013

How do you prepare?

How do you prepare?  I've been asking myself that since last Tuesday!  How do I prepare, not only myself, but my daughter?  How do I prepare her for a third surgery in less than a year? NO child should have to endure this!  How do we get ready for the all the doctor's visits that are to come? The pre-op appointments with her orthopedic specialist and the new pulmonary doctor? How do we prepare for surgery day; the onslaught of doctors, nurses, anesthesiologists, specialists, etc... that will enter the room to introduce themselves before surgery?

How do I prepare for "several hours" of surgery?!?  Just the thought of that is so nerve-wrecking, to know that my sweet daughter will have to not only endure another surgery, but it will take several hours to complete.  I don't know how to prepare my child for, according to her doctor, at least another week in Children's Hospital?

This is a tough challenge we have ahead of us, one we can not avoid.  I'm so on edge and hurt by this because every surgery she's gone through so far, has been ones I thought could be avoided. They have been procedures that I thought I was doing everything for her to not have to go through them.  The February orthopedic surgery, I thought wouldn't happen because she was sleeping in her night time splints/AFO's, not every night, but even when she didn't sleep in them, she wore them the next day.  The March g-tube procedure, thought could be avoided by feeding her every three to four hours, buying lots of yogurts, apple sauces, mashed potatoes loaded with butter, my mom's homemade dressing, etc... This upcoming surgery...I  did what I was told, I put the scoliosis jacket on  Kerstin at night, and even after she didn't want to fall asleep in it, her doctor told me to make sure she wore in while she was relaxing on the sofa.  I did all of that! I still put the jacket on her, even after I thought she was pulling my leg and just didn't want it on.  Yet, her curve still increased!  She wasn't pulling my leg, we were told that the jacket had started to bother her.

How do you prepare?  How do I prepare?  The only thing I know to do is to stay prayerful, and know that she will be fine!  I'm trusting our Savior for that!

Psalms 55:22-Cast thy burden upon the Lord, and He shall sustain thee: He shall never suffer the righteous to be moved. 

Friday, July 26, 2013

Surgery day is coming...

We're getting so much support from family, friends and even strangers.  It's time now to mentally prepare myself for another surgery, and my daughter being in the hospital for at least a week later this fall.

It is going to be rough, this will lead to more appointments, follow up appointments and lots of trips to Birmingham...which is a 124 mile trip, one way.  I'm not looking forward to it, and it is going to be especially hard, since I no longer have a job, as of this past May.

I'm keeping my faith, I know the Lord will bless us, and put things in place so that we will not have to worry about the financial strain another surgery can bring.  All of this is for Kerstin, and her health! If you can, please make a donation to help us along the way.  It is greatly appreciated!

GoFundMe donations can be made here.

Dwolla Donations

Thank you,

Wednesday, July 24, 2013

Here we go again!

On Tuesday, Kerstin had her post-surgery, cast removal appointment with her orthopedic specialist.  We were excited, because her feet are looking good, healing fine, we just have to get her some school shoes that she can wear over the AFO's now.  Everything was going well, they didn't have that many patients, so the wait was minimal.  Although, I must say,  kept having a funny feeling about the appointment, before we left home, I kept thinking that I just did not want to take her. Even after arriving at the office, I was hoping maybe the doctor had to cancel for the day, I know they would have called beforehand.

We check-in, I was asked about the paperwork they mailed weeks before, to bring to the appointment...wouldn't you know, I completed the forms and forgot to take them with us.  Luckily, it wasn't a big deal, I redid the forms there.  Kerstin is called back, we talk with the nurse, Mandy,  about the spasms she's been having lately, I told her that I was also concerned with her leaning a lot when she's either in her wheelchair, Tumble Form seat or just seating on the sofa.  She was sent to ex-ray to get imaging done.  During the ex-ray I just had an overwhelming feeling that I wouldn't like the news we would get, yet, I was still hopeful.

We're back in the check up room, having playful convo, while I administer her walks her doctor, file in hand. He spoke, took his seat in front of Kerstin, she never forgets a face, so she gave him that big smile, he rubbed her arm and spoke directly to her.  Exams starts, he stated she looks good in her AFO's and to keep her in them as much and as often as possible, he flexed her legs and said they looked good as well.  He even noted that her dislocated right hip has flexibility and show no arthritis.  All good news!  Then he looks at me and says, "Mom, we looked at her ex-ray and her curve has increased...she is now at a 50 degree curve..."  I think I stopped breathing!!! That's up from 40 degrees just in December.   He continued, " It's time now to talk with family, because we can't let her continue at this rate, without correcting the curve, when children get this much of an increase we have to do surgery so that it does not increase.  We don't want her at a point where she won't be able to even sit up in her wheelchair."  As always, I sitting there looking at this beautiful child that will have to undergo, yet another surgery, trying my best to hold back the tears that are burning in my eyes. " We also need to correct her at 50 degrees verses waiting to 75-80 degrees, and that surgery would be more intense and invasive, because she would have to be cut in the back as well as the front."  I'm trying to make sense of it all, even a day later...

We were also informed that, we are going to nee family friends donate blood for her surgery, they would give me all the directions for that prior to surgery. I asked how long would she be hospitalized for this surgery.  He said " Let's say surgery is Monday, she will be there at least until Friday or Saturday."  Another week at Children's of Alabama is in my near future, sigh!   He asked if Kerstin had a pulmonary doctor, no she doesn't.  He stated that was good, especially since she now has her feeding tube.  As he was talking, I'm thinking and trying to remember what is pulmonary? He told me that a pulmonologist is needed on the team because of the tube, to make sure breathing is fine, there will be heavy sedation for the procedure...he also said that the long stay is because they will have her on iv fluids, but they wouldn't want he too sedated to take her boluses, because of swelling/stomach expansion. Things went blank for me, I heard him, but it seemed like I didn't.   He continues on with reasons why it needs to be done in the next few months, pulmonary doctors don't like to have children having surgery when it's cold and flu season, the weather is too cold, because of the risk of them being in the hospital with sick children and them getting sick. I asked him if she could be fitted for another scoliosis jacket, and would it help?  He looked at me so somber and sad, he let out a sigh, and so it would not help at this stage. Devastated, because I was putting her jacket on her.  Like I said before, I thought she had started pulling my leg and not wanting it on at all.  He told me at another appointment that it was too painful for her.

 Doctor stepped out to get me the ex-ray image and said that his Nurse Mandy was going to talk with me about the pulmonologist and other things. She starts by saying that the new doctor will need to be seen a month before surgery.  I asked when does he want to do surgery, she said late September, October or early November.  I remember telling her, she will have just started back in school.  She said she understood, and we could do late October/ early November.  She said because if we do September we need to schedule the pulmonary doctor now.  So now, it up to me to talk things over, get family and friends to donate blood and let them know, late October or early November.

I'm not looking forward to the day!  Seeing this face, knowing she's about to go through something again, that no child should have to deal with, breaks my heart.

I looked at her and snapped this pic after her appointment.  I thought, "You have this beautiful smile on your face, after that appointment..." We ran a few errands and on our way home, I could not stop my tears, they were rolling down my face.  I saw her from the corner of my eye, looking at me...had to try and pull it together, no luck.  She eventually stopped and started back watch her movie.

I have faith and I know that this surgery will be a successful one as well!  I just can't help or control the feelings that this year of 2013, has not been kind.  If I could go back a couple of years...


"A Patient's Guide to Scoliosis" 

"Scoliosis and Rett Syndrome" 



"Surgical Treatment for Scoliosis"

More to come...

Saturday, July 20, 2013

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...