Just sharing...Someday At Christmas!

My little princess loves this time of the year!  I still can NOT believe that my daughter turned 10 this past Saturday!  Mommy is still in shock and awe!  She has been enjoying herself with all the Christmas cheer; the cartoons, the movies, the decoration and most definitely the music...one of her fave albums is The Jackson 5 Christmas, especially "Someday at Christmas"!


To you from Kerstin!  Merry Christmas!!!

Happy Thanksgiving!

Let's give THANKS, not just because the calendar says so...give thanks every day!!!

Wordless Wednesday =)

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...

The week did not end on a good note...

So, we've decided to keep therapy days on Friday's, that will give the princess a chance to rest and regroup.  Not going back to school the next morning sleepy and groggy from the exhaustion of school and therapy the day before.

This past Friday, she also had a weight check before therapy...get there and she has LOST about 10 ounces :(  So not what I wanted to or needed to hear!!  I was distraught and thinking what can I do ( suggestion are greatly appreciated ) to get my daughter to gain weight and maintain it!  I was told by one of therapists that added coconut oil to her foods ( pediasure ) would help to add extra calories.  I've got to get a food processor and make her purees myself!  I just feel so helpless and not sure where to start and what to do...giving up is NOT an option though!!

We're going to make it happen and get through this too.

More to come...

Another school year underway!!!

YES, it's that time of they year...school has started and my sweet pea is getting on up there in age!! Stull unbelievable to me that she will be in double digits in December...*tear*!  I have a beautiful little lady in the making!

Her first week has already been busy...school and therapy! Here's a first day of class photo!!!

And a therapy photo...petting "Brodie" after they worked so hard.

( Brodie is an Easter Seals therapy dog ). You can also join a great cause and help raise money for this type of service and so many others to help benefit children and adults with disabilities.  Join a walk/team or just make a donation: Princess Kerstin's Team.


More to come...

Pulling mommy's leg!!!

Tomorrow should be another interesting day of therapy!  Last week my little princess had therapy, but my sister went along with us to do some back to school shopping!  What would you know...the princess got to therapy and decided she was NOT having it and 'pretended' to be so sleepy and totally not in the mood for her session! Therapist came back out with her and told me that she seemed so groggy and not up to therapy that particular day...she was looking the part!!!

About an hour later, after lunch, we arrived at Target...ALL SMILES!!!  She was literally in her "happy place"!!  We were in there longer than usual because of back to school shopping for her and not once did she have to be re-positioned in her chair or anything...cool, calm, and collected!  :-)

Gotta love MY PRINCESS!!!

More to come...

Tears!!!

Wednesday, July 27, 2011, was a stressful morning for me...it took everything in me to hold it together until I was able to get to another rooom away from my daughter.  Her heel on her left foot still has this little spot from the rubbing against her night time splints.  Back in June and her right ankle was extremely red without having the splints on the night before.  It was so red and actullay peeling...BROKE MY HEART to see this...I couldn't get away from my princess fast enough to get to another to cry!!!  I eventually got it together to give her a nice warm foot rub and massage with Shea butter.

I know with the redness that isn't fully clearing, it is almost a give that she will be undergoing that surgery this fall/winter.  We are not giving up on anything, we are still moving forward...taking each day one step at a time.


More to come...

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Wordless Wednesday

I never seem to remember! Oh well, MY Princess!

More to come...

Weight is coming back up!!

So happy, that on yesterday my precious little one had gained a pound of her weight back!  Still not what I expected, but it is a step in the right direction.  She also had occupational therapy yesterday and did really well!  So happy for her, for us!!  We are going to relax again today and enjoy the blessing of a air conditioned home!!

More to come...

Quality time!!

That's right!  We got it in today!  We went to see Cars 2, first viewing was sold out and I thought we were getting there on time!  We were able to get tickets for the second show!  If you're thinking of going, go!!  Very fun movie....we love  Cars and was not let down with this one!!

At first, my princess thought we were leaving without seeing a movie, she was looking sad, I explained to her that we had to come back because the first movie was crowded and sold out!  That movie theater was a welcomed sight when we got back.  I thoroughly enjoyed my day out with my daughter.  No one else, just the two of us!!

More to come...

Tough cookie!

I think my little princess is about as tough as they come!! Really!!!! We are still working at the scoliosis jacket...talk about a process!  She is still resisting.  I am determined and prayerful that she will wear it on a daily basis, does not matter if it's day or night, one hour or 8.  Even if I have to put it on her for an hour, which is all she put up with last night, and take it off for a few hours then back on again.  Whatever it takes to avoid any kind of spinal surgery...we're gonna do it!! Persistence is KEY!!

Mommy is excited about taking her to see Cars 2 this weekend!! That should be a cool treat for us both, and an escape from the everyday things!

More to come...

Scoliosis jacket/ night time splints update

Progress has been made, finally got the little darling to sleep ONE full night in her jacket!!! YAY!  I really think it was by accident on HER part.  She was sleepy and it was going past her bedtime when I put it on her Tuesday night ( 6.7.11 ), I was so elated that we got a full night.  She had other things in mind, because since that night she has NOT made a full night again, luckily we had and ortho appointment this past Friday, and he said that the jacket is doing its job, when she's in it, her 19 degree curve was down to under 5 degrees, shown during her x-ray!!  Happy about that!  I asked if it was okay to have her wear it during the day while she's home lounging, to get her acclimated to it...YES!  So, we shall see!

On another note, the night time splints, which we've had no problems with getting her to sleep in, rubbed her foot Tuesday night causing a red spot on her heel that still hasn't cleared, but the ones on her ankles have.  Dr. said to not put them back on until that spot is gone.  He stated that she moved around a lot that night causing the friction,and with her skin being so soft that caused the bruising. So, as you can see, its constantly something, but as always, we're pressing through it!!!

More to come...

Weight loss!

On last week, my princess had to go in for her bi-monthly weight check.  The first since her cluster seizures and cold!  Unbelievably, my sweet girl had lost a total of 5 lbs.  I was devastated so that I had to just sit in the parking lot once we were loaded  just to gather my thoughts and compose myself.  To hear this just took something out of me.  We've been working so hard to get her weight up, now she was down  2 lbs more than when we first started with the high cal PediaSure/ 4 per day ( sometimes she"ll manage 3 ) and trying to  get her weight up so that she doesn't have to have a tube placed.

God is AWESOME and there is power in His name and we are going to get that weight back up.  We are now back to monthly weight checks.  So by the end of June she will have gained at least 2 lbs, believing it!

We're striving!!

More to come...

Busy schedule

Since the last post, my little one has been free from noticed seizure activity.  I say noticed because a previous EEG showed that she has "quick fires" while asleep.  Even though she has not had pronounced activity, we have been very busy with making sure her scoliosis jacket is a good fit for her, and that the night time splints meet the specifications of or orthopedic specialist.  Not, the case, the jacket is back with the orthotics office to get some adjustments made and doctor does NOT want her sleeping in the splints just yet, just place them on her for two hours at a time and take them on to make sure there are no pressure spots or anything to cause irritation to her ankles.

My sweet daughter was only able to go to school two days this week, because she has been under the weather with a little cold, she's finally coming around...its been a battle.
Not only has the cold been bothersome to her, the Zonegran has had her in a major fog, since the dosage had to be increased.  Now, per the instructions of her neurologist, she will be weaned off of it over the next three weeks and re-introduced to the Topamax.  Just another complicated schedule this mom has to keep  up with!! OH JOY!!  It will be done, because it has to, and with God as the center of our lives, this and everything else that comes our way will work out just fine.

More to come...

Easter Sunday

We had a very unexpected turn in our Easter weekend plans.  On Saturday we had a nice day out, my princess, her best friend/cousin and I went to the movies to see Rio.  Awesome movie by the way.  Afterwards we did a little shopping to finish up with the holiday weekend meal. Came home still having a decent Saturday, until late that night!!

She had fallen to sleep around 8 that evening and was back awake around 10, I thought it was kind of strange that she would wake back up after the day we had.  So, I was busy cooking and making preparations for Sunday, doing my hair, laundry and other "mommy" things!  I walked into the room to check on her around 11:30 pm and she was looking at me in such a spaced out way, and she had lots of drool coming from her mouth...I had the gut feeling that my princess was having a seizure, I tried to get her attention and she kind of turned her head and was just staring at the ceiling then her eye started to twitch.  I called one of my sisters to let her know that my princess was having a very involved seizure.  Before I knew it she had two aunts in the house with help, for moral support and thank God, one is a nurse.

The first seizure only lasted about 3 minutes, then my baby started seizing again.  Another short one, my nurse sister called the neurologist to let them know that she was involved and having "clustering seizures", I had never read up on that or heard of it until she mentioned it to the doctor.  For the first time since my baby had been diagnosed with epilepsy and being on a seizure medicine, Topamax and was weened off, then just this past March being place on another, Zonegran, had her Diastat had to be administered in our home.  That was done around 12:30 am.  I was so devastated and knew I could NOT let her see the hurt and frustration in my eyes. Its amazing how a child knows MOM so well that they can tell its something going on without her uttering a word. She fell asleep shortly afterwards, but still had some activity, even while the drug was been given.  This mom couldn't fall asleep until 3:30 am, for watching her princess!

Needless to say, she was home from school today, still kind of groggy and drowsy from the Diastat coupled with the Zonegran.  We got a call today from the nurse at her neurologists office to see how she was doing and to let us know that per doctor's orders the one per night capsule ( opened, taken with ice cream, smoothie, whatever works )  has been upped to two.  I told her that its already hard to get her to take one, now we have to war over two.

As always, we will press our way through this too!

More to come...

Just wanted to welcome you all to MY LIFE

Thank you so much for stopping by!  If you are new to MY LIFE, just leave me a comment and I'll be sure to follow your blog as well!  Enjoy the "Blog Hop"

More to come...

The stress of being mom and all...

Being a mom is hard work, no matter if you're married, single parenting, raising one or twenty kids.  Raising a child with a disability coupled with single parenting is tremendously hard.  It has to be done!!!  I  never knew how much stress can affect you until this month.  After hearing that my daughter has scoliosis and would need another surgery on her feet, all of that along with...yeah, her hip is still dislocated, I was totally drained.

I took my daughter to be fitted for the jacket and the boots that she will have to sleep in and that day I felt myself feeling week in my back and leg...being 'supermom' I let it slide.  We had a nice outing afterwards, went to see "Hop" and the pains grew and grew, going from my back hurting to feeling okay then my leg would feel like it was just cramping...when I tell you that today April 19, 2011 is the first day I've been feeling okay.  Still not 100% but I can bend without pain and sit and get up without pain.  On last Friday, I had taken my daughter to school, and I was eager to perform my duties as her paraprofessional but the pains were unbearable, and I decided that I had to get that much needed break.  That's what we did!! We came home and relaxed!  Long soaks in the bathtub and leg cramps pills along with Motrin did the trick.

Basically what I'm saying and telling myself is that I need to take care of self as well...take mental breaks ( those are few and far between ), I have to because my princess needs me!!

More to come...

Update

On April 1, took my princess to be fitted for the scoliosis jacket she will have to sleep in along with the night-time splints, her new 'required' night time gear! :-(  I am not sure how she's going to tolerate having to sleep in all these extras, especially with hot weather approaching.  We are going to make the most of it and do the very best that we can, as always!  Making strides with smiles on our faces!

Once the jacket is complete, her ortho specialist wants an x-ray of her in it...hopefully this can be done in a facility near us, so that we won't have to make the two hour one way drive to the hospital he practices out of.  

More to come...soon :)

This is a tough one...

I've been taking my time to sit down and compose this blog.  I had to call my mom and one of my sisters has been constantly giving me supportive pep talks.  I didn't cry at my daughter's orthopedic appointment this past Tuesday, but wanted to after hearing the doctors report.  This appointment was made because I had expressed concern to her physical therapist about her foot and she along with another therapist had concerns about her back and that maybe she had scoliosis!

Arriving at the appointment, she had to have ex-rays done, I mean plenty of them in different positions; back, side, legs straight, feet pulled up... So when the doctor came in, I knew instantly he had something to tell us.  There is what he called a "19 degree curve in her spine and she will have to wear a scoliosis jacket at night for the next few years, its not a significant curve and we are catching it early, thanks to watching her and her therapies".

Her ankle: will have to have surgery by the time she's 10, unless her foot ( ankle ) starts to swell, the calluses turn red and are bruised/irritated.  He was saying all of this and I'm looking at my 'baby' on that examine table like "OMG, another surgery!"...thinking she'll be 10 in December...then he explains the "gluing of the ankle"..which brought the tears, but I held them back, so that I wouldn't cry in front of her.  The "gluing" is major 'bony' work, she will have a pin in ankle to hold her foot straight and another heel cord lengthening to help release and not cause her foot to turn.  She will also have to have a multi podus boot, to sleep in as well!  That's going to take some getting used to for the both of us.

That was my Tuesday in a very hard nutshell.  So, tomorrow, we will be on our way to be fitted for the jacket and the boot!  Afterwards, I have to let her have some fun, and I will too!  We are going to see the new Easter movie, Hop!

More to come...

Today has been one of those days...

It's Monday...a cool and dreary Monday!  We have a busy day tomorrow, a trip that 2 hours one way to see my princess' orthopedic specialist.  That's the main reason I decided today would be a day of us not leaving the house and just hanging out relaxing, watching TV.  Believe it or not the little one is into Twilight ( mommy too ), that's what she's watching now as I compose this blog. 

Will definitely post updates tomorrow on how things go at this appointment, because her physical therapist has some concerns about scoliosis and her left ankle bone is protruding and her foot seems to be turning outward more.  She's requesting that the doctor changes her to a multi podus boot ( i'm assuming it would be similar to this or this one ) because its softer and she doesn't think the harder plastic AFO's are working for her now.  

It always seems to be one thing or the next, but we are still striving...not giving up!

More to come...

My princess...

Love her dearly!!  We had a long day on Monday...what a way to start off our Spring Break!  God is in the small stuff...on yesterday, my princess had to go to Children's Hospital ( great place, excellent doctors ) for an appointment with the neurologist there!  I didn't post about this, but a couple of weeks back she had these little jerks and had her head turned in one direction...everything in me said it was a seizure again...didn't want it to be but that motherly instinct said it was.  Made and appointment to see them again and doctor ordered an EEG, our routine follow up turned into a three hour appointment.  Results will be back at the end of the week!  However, her doctor put her back on a seizure med a lower dose than the one she was previously on and reassured that he did not want her permanently on them and could be weened off just like before, just didn't want her having seizures that were not treated by some  a med!  He also ordered labs so he could check for things!

We are, as always, praying through this too!  She's fine, she's happy and mom is doing all that she can...couldn't do it without God and constant prayer!

We've got to make the most of this week away from school!

More to come...

Dreary day!

Its wet here today!! Its been raining since last night..appears its going to be raining for a while!  Its okay, we get to spend this day in the house cuddled up watching TV ( cartoons ).  Normally this would have been a school/therapy day, we actually had three appointments scheduled for today; a seating clinic ( making wheelchair adjustments ), Speech and OT....the rain and storms delayed all of those!

The little one is peacefully enjoying her relaxing day with mom...I'm enjoying the day in with her!

I am serious about being able to make the best of what we have and build on it!  I want to build on this blog and let it serve as an inspirational point for someone that has to go through trials, large and small, parenting is not easy and having to parent a child with special needs can be overwhelming.  I always tell myself to make time for ME, haven't done it much but that's a must!!

More to come...

Great news day!

In previous post I was talking about my mom starting dialysis soon...today would have been the day she had her Peritoneal dialysis catheter placement. A mouthful! We had her at the hospital bright and early for the procedure, but after she was in the back and had more labs/blood-work, etc... done, her doctors were able to determine that her kidney functions had stabilized and were doing good.  NO need for the procedure now!  God is AWESOME, no one can tell this family otherwise!  Prayer works!!!

My mom was trying not to worry and stay in good spirits about everything and we were determined to help her, even though I personally was a little worried, but never deterred from PRAYING for my mom's strength!  We will continue to be a praying family, God is too good for us not to praise Him for his boundless graces!

More to come...

My Life: Today was a good day at therapy...

My Life: Today was a good day at therapy...: "My little princess had the opportunity to pet and get acquainted with therapy dogs today! She was so relaxed and alert during her session t..."

Today was a good day at therapy...

My little princess had the opportunity to pet and get acquainted with therapy dogs today! She was so relaxed and alert during her session today. She had great head control and was actually looking from side to side at the dogs, she opened her hands on Que and the tone she usually has in her arms was not present today! I think she was telling mom "Its time to get me a therapy/service dog".

I have to do some research on them, and see what kind of dog would be a better companion for her! Mommy's gonna work on that too!!

More to come...

Princess update:

We had a late start to our day because she was up at 2 a.m. And did not go back soundly until after 5. Last night before going to bed myself, I was watching her sleep and for about a minute or so she kept jerking her head slightly and making a little sound! I knew just from experience she was having a mild seizure. And, once she woke up, I kept noticing her drool was way thicker than usual and she seems a little tired. As of now...she's happy and alert! So glad she has NOT been having seizures on a regular, none lasting anytime, but her doctor's have said she has mild activity in her sleep, this is the first I've been able to notice while asleep. She has a neurological appointment coming up soon!

We are still pressing forward, with grace!!

More to come...

Just realized...its only been 7 weeks since my last perm and 1 since I decided that was it! On my transitional journey! I'm proud of me and excited about it!

Inspiration during my transition!

I just received this very inspirational email from "Transitioning from relaxed to natural", I know it maybe customary, but its inspiring me!! My beautiful natural daughter is my big inspiration for beautiful natural/healthy hair, but this gave a little more encouragement.

"When transitioning from relaxed to natural hair, you might get stuck, you might start to feel frustrated, you might want to quit and go back to straighteners.

When it gets challenging it is important to have reminders of why you are doing this to keep you motivated and focused.

Write down your wish or desire and put it up in your bathroom. “I want my beautiful, healthy, natural hair.” Think about or write down why you want to give up on relaxers.

For me it was that the chemicals were killing my scalp and I got one bad burn that was the last straw. I simply didn’t want to do it anymore, but when the transitioning gets a little tough, I think about my goals and it helps me to keep going. If you start thinking you might want to relax your hair again, watch the movie Good Hair. In particular the scene where he shows what happens to a piece of meat when the straightener is applied to it. Yuck!

Just a little food for thought for the day.

Happy Transitioning!

-Olivia

http://transitioningfromrelaxedtonaturalhair.com/

We'd love to hear from you. Please visit the site and share stories of your progress."

I am already enjoying the journey and I'm soaking up the information I'm finding online and getting! Glad to be a natural healthy hair journey with my daughter and my sister!

More to come...

I'm on my journey...

Okay, Saturday was my first wash...steps on this transition to my natural hair! I'm so excited about the process and the change! I'm still researching and reading product reviews, watching Youtube videos and reading blogs on the transition to natural. This is gonna be joyous! I'm transitioning and my little princess is my inspiration on so many levels!

More to come...

Doing it!

Yesterday, Feb. 14, 2011....I finally decided to take the steps to GOING NATURAL!! My permed hair is down below my shoulders...I realized that I can't make sure my daughter stays natural and mommy is NOT! I know this is going to be a journey! I ready, willing and excited about the ride!

Now to break the news to my hairstylist of over 7 years! Oh well!! I'm doing what's good for me and my daughter! Gonna save big on the haircare now!!

More to come...

Test..trying out the mobile blog! :)

The last day of January 2011

Wow...the past week was very strenuous, busy and a fast paced! We had to make arrangements for Grandma's funeral and prepare for out of town relatives to come in! Sad occasion, but had the opportunity to connect with relatives we've only heard about: only seen once or twice and some we've NEVER met! 

 It was so good to get that connection and we have got to stay in contact! Our family is large and still growing. Mom and her children, grands and great grand are the only ones in AL, the rest are pretty much in MI, some in GA, OK, CO, etc.. My grandma gave birth to 8 children, 6 living...she was the matriarch of approximately 31 grandchildren, 57 great grandchildren and 17 great-great grandchildren. Estella Rush-King was 95 years old would have turned 96 in March!

We are a blessed family!

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Organize in style from Home Made simple! Go here to get yours!

More to come...

" be happy no matter the adversity"

"Be happy no matter the adversity!" So glad we're a family that prays together and can truly find happiness no matter the adversity!

More to come...

Struggles and strife seem to hang around for a while...

Last Tuesday night...wee hours of Wednesday morning, we received word that my grandma ( mom's mom ) had passed away at the age of 96. Shocking and saddening. We didn't want to tell our mom until all of her children could be there with her to break the news to her, following her own lengthy illness! She was hurt and shocked!! :( We are a praying family and will remain one!!

Grandma lived in MI and her body is being flown to AL for burial...we are anticipating my mom's sisters and brothers and nieces and nephews from different parts of the country this week and next.

More to come...

Late New Year start

Happy New Year!!

There has been tons of things going on since the last post! TONS! First, my sweet pea is on a steady incline of weight gain, with only one setback in October when she was really sick with a cold and lost a few ounces, not much. But, since then she has been constantly gaining, we're only a few ounces shy of the nutritionist 40 lb goal. Yes, that is still small for a now 9 year old, but its up from where she was and this gain keeps her from having a feeding tube...we'll take it!! She's gonna continue to gain and mommy will lose!

Back in December, the love of my life turned 9!! I'm still in shock at how much she has grown, the progress we have made, the goals she's met as far as PT goes. Thank God for BLESSINGS and miracles. She is still having weekly PT/OT/Speech sessions at the hospital! We are on another path of praying its not what they're thinking...dealing with scoliosis when she's sitting...over the ball ( therapy ball ) her back is straight but her PT noticed some subtle "curving". This too shall pass and its nothing God can't handle!

Also, in December, the Sunday after my daughter's birthday, my mom was admitted to the hospital with severe back and leg pains, she couldn't even walk. She was in for three days and had to have a biopsy done because and MRI showed some spots on her back bone. My mom also suffers from Kidney disease/Renal failure, and these spots could be a cancer caused by the kidney problems know as Myeloma. After that biopsy was done we had to wait another week for the results... talk about fasting and praying! Her appointment...Dr. said the test showed no cancer but he wanted to make sure it was ruled out and was going to schedule her for a mammogram, pelvic exam and another biopsy! Appointments were scheduled...but mom got worse with pains and swelling. She was hospitalized again, this time for a week! She had the other biopsy done and we were told that the results comes back in three phases first phase negative of cancer. She had her follow up last week and still making strides and doing somewhat better. She does have to start dialysis, but will be able to do the in home treatments. This process will start within the next few weeks! We are praying to God for divine intervention, strength and knowledge to endure this too!

In spite of all of this we are looking forward to and expecting a GREAT year! With God as our guide we can't go wrong!

More to come...