Changes...

So, last Thursday, my sweet pea had a 'feeding clinic' appointment again. I initially thought she was going in just to be fitted for a Tumble Form feeding chair...the appointment was just that, another feeding clinic. She was weighed, length taken and the talk of nutrition and feedings and watching her eat some of the things she likes to eat. But, it turned into one of the most devastating appointments I've have with my daughter in years!!

We had gone alone, just the two of us, and to hear the nutritionist and speech pathologist say that she is underweight, which was not a surprise to me, she's short for her age, no surprise here either...she hasn't gained or grown in four months...surprising! Hearing, "we may have to look into a feeding tube to help meet her nutritional needs, she can still be fed by mouth but her Pediasure will be tube fed"...devastating!!

I cried, and could barely compose myself for the rest of the appointment...I managed to find out other options. She will be placed on a higher calorie nutrition drink four times a day and will have to have monthly weigh ins.

I am praying to God for the strength to make it each day...for the knowledge and ability to do the best that I can for my daughter. I've been reading and researching other drinks, different purees and mechanical soft foods...she will be fed more throughout the day, she will gain weight, no feeding tube needed!!

more to come...

nOT FEELING IT KIND OF WEEKEND...

Sweet peas has been sneezing all weekend long. Along with the sneezes came a runny nose....we've been inside all weekend, Vick's rub, humidifier, Benadryl, Tylenol....whatever it takes to get her back to herself.

I've been dealing with some things personally and spiritually! I'm a work in progress spiritually! I'm growing and changing...being prayerful ( DAILY )!! I've being trying my hardest to stay on task with devotional readings everyday and I'm constantly saying little prayers throughout the day! i'm so very thankful to God for the many blessing endowed upon us! The fact that I am able to be at school with my daughter everyday as her paraprofessional/ aide, the fact that I have not worked in 5 years and we are still being blessed!! That's something to praise Him for!

I thought of that famous saying " when a person shows you who they really are, believe them." I'm seeing that in my life and I'm believing what people are showing me! Its funny how I've always heard people say that when you start to grow and the Lord is preparing you for bountiful blessing, that's the time when you'll see the so-called friends dissipate. They never were friends...they're showing you that in the midst of your growth!

Thank God for lessons in all forms!

more to come...

Another week done!

Week two of school is in the record books!! Sweet pea had a fairly decent week! We came home early on Wednesday because she had had two long days, Monday and Tuesday. She was tired and took a nap when we got home! Not like her at all.

I'v been facing yet another conflict with things at school for her. I can not seem like for the life of me get an understanding from her speech teacher on what day(s) she will be working with her. I'v told her more than once that for the past few months she's been having therapy at the hospital on Monday afternoons. She first told me that she would work with her on Monday/Wednesday mornings at 10 a.m., then it was Tuesday/Thursday at 10 a.m., then Thursday she decides she wants to see her at the time the resource teacher has her scheduled and that was so distracting and very confusing. She tells me today at the end of the school day that she's 'probably' gonna work with her on Monday and Wednesday at 1 p.m., but wasn't sure. I was like okay, I'm not asking anymore and her therapy appointments have been scheduled for September, on Monday afternoons.

I am so tired of the 'educated educators' being so asinine!!

More to come...

One proud mommy tonight...

Today was a busy Monday for us! First, school, only for part of the day because of therapy. Therapy was AWESOME today...my sweet pea was able to use her Dynavox ( communications device ) to talk to two little boys ( Matthew and Luke ). I was so excited as well as her speech therapist ( Brittney ) when she activated the device to tell them her name, how old she is, what she likes to watch on tv and her fave store!!

Its a tedious process to get her used to using it, we're trying different formats to get her to using it more and more! We're, or should I say, SHE'S getting there...a work in progress!! By God's wonderful grace she's going to be talking my ears off with it soon!!

More to come...

One week done...

Well, one week of the new school year is over! My sweet pea had a pretty good week! She is so excited about the new Smart Boards at her school! They have her full attention when in use, and that's a very good thing! She has to change classes this year, outside of going to P.E. and speech, she was in her class all day! This is new to her and to me...just another sign that she's growing up!

She had last week off from therapy to get acclimated to being back in school, but we're back at it Monday!

More to come...

It's the weekend...

Which can only mean one thing....'back-to-school' Monday! Summer is over! No more of me and the princess lounging until midday sometimes, not more morning therapy appointments, no more laaaatte night tv watching, except for me watching some of "Big Brother After Dark".

Sweet pea's room has been cleaned and organized, closet is cleared of clothes that she has outgrown, they are packed and ready to be passed down to her little cousin or donated to Goodwill. I also managed to get our computer room/office cleaned and mostly de-cluttered...with the exception of the closet/ storage in there.

We are ready for Fall...the leaves changing colors and the COOL weather. I'm ready to treat my sweet pea to a weekend getaway in the cool weather too! We are also ready to see out soldier! Praying for his safety and recovery daily!

School updates are a definite!!

More to come...

Only a week left....

There is only one week left before our summer break is officially over! *sighs* It has been lots of fun in spite of the heat! We've managed to stay busy with therapy and other appointments. On Tuesday, the 27th, sweet pea had an appointment with her orthopedic specialist for routine follow up on her hip dislocation. Thank God, still no arthritis or scoliosis!! She will not have to see him until next summer unless her therapist thinks or sees a reason or need to see him sooner.

I'm kinda excited, somewhat though, to be getting back to school with her. She will be in 3rd grade! Where did the time go? She does NOT know that man that is considered her 'dad' she wouldn't know him if he walked in the door right this moment. He has not seen her in 6 years...sad excuse for a man and 'father'! That is not stopping us from enjoying life and our time together! She is a blessing and has changed mommy's life for the better!! Nothing and no one can make it better! Our BOND is unbreakable!!!

more to come...

coming to a close! :-(

Well...its officially coming to a close....summer break! Only a few days before the start of another school year. I still can NOT believe that my princess is going to the third grade!! I'm so proud of her, and love her dearly! I told my mom that one she's done with the elementary school setting, I'm thinking of homeschooling her. The fact that the middle school she would be attending is NOT really all that accessible and its a battle that I just don't want to deal with anytime soon. I'm so THANKFUL to God for the opportunity that I have been blessed with; going to school with her everyday she's able to attend, as her paraprofessional/ aid! Truly a blessing!

I'm looking forward to this upcoming year, a new special ed. coordinator is in place; I've submitted a letter asking that Danita and her staff not be paid for services to my daughter, because of their lack of professionalism. I can not wait to meet the new coordinator, sorry Ms. Long didn't get the position though.

We have another orthopedic visit coming up next week, anxious to see what he has to say about her legs and the possibility of another surgery. All of this is turned over to GOD and I'm praying for the strength of not worrying over any of it!

...more to come...

Georgia summer trip

Kerstin got the chance to go to GA to visit the World of Coca Cola for the first time and the Georgia Aquarium for the third time. She had fun and even tried to keep her good spirit after getting some kind of virus. I'm not sure if she came in contact with it from someone at Coke or if it was from her sampling the many different coke products from around the world. I had to run out to CVS to get her some Immodium and Pedialyte. I think my sweetpea was a little home sick too.

We ( Regina, Audrey, Kerstin and myself ) had a great time!! So happy to wake up at home this morning though!

Summer, summer, summertime....

Wow, it has been a really long time. The last time I wrote, my sweet pea had gotten sick and was not doing good at all. I'm thankful to say that she is doing much better and that LIFE took over and we just simply got busy with all that came to us.

Miss Kerstin is out of school for the summer, but she is in an extended school year program, that is approaching the last day. I'm studying up on what it takes to really become a 'blogger' so that I can officially go public with a blog on the day to day life of parenting a child with a disAbility.

Even though school is out and the summer program is only half days for a few weeks, we've still been very busy. Therapy weekly, OT/ PT now speech is added, we have clinics; seating and feeding, ortho appointments, one coming up real soon. We all of that...I still want my little lady to have some fun, get some exposure other than doctors and specialists.

We are gonna have some fun and I intend to 'blog' about it!!

More to come...

Just loving life....

My sweetpea has been under the weather for the past couple of days....praying for a speedy and full recovery! God is always in charge and is working everything out!!

More to come...

Still thankful

Today is my mom's birthday, my little Miss 'sweetpea' made her a birthday card! We are so very thankful to have her in our lives...she has a truly blessed family. Five living children, one deceased, six grandchildren so far and so far one great-grand! That is a BLESSING!

I've been talking with my soldier back and forth a lot lately; got some pictures from him yesterday! I'm thankful for him too, and pray fro his continued safety!

More to come...

Provisions and God Providing

There is so much to be thankful to God for. I tell, blessings are blessings no matter when or how you receive them. Unexpected blessings live up to the title of BLESSING. I am so thankful God, for the blessings you have provided this weekend...and this very moment! THANK YOU!!

I will continue to praise you and give you thanks for all that you have done and for what you continuously do.

Just had to tell of the unexpected blessing received last night....thank you Lord!!!!!

More to come...

So thankful...

My sweet pea had her orthopedic appointment on yesterday...thankfully the Dr. said that surgery could be put on hold because she isn't showing signs of arthritis or scoliosis!! That was very good news on yesterday and I am so thankful to God for that news. I could not stop smiling after hearing him say that.

I am a work in progress and I thank God for all that he has done for us, and all He is doing!! I had gotten to a point where I was worrying and wondering how we were going to make it had he decided to go on with the surgery. When 'sweet pea' isn't in school we have no additional income. Being out of work or having a slow doesn't slow the bills at all.

I am so thankful for supportive family and a few friends that really show their concern and consideration towards me and my daughter. I am especially thankful ( at this moment ) for Damon T. Warren, for being considerate and always asking about her, sometimes before he asks how I'm doing, and for him wanting to know how things are going with and for her, means a lot, especially when he 'dad' doesn't show that kind of concern!

Prayer: Lord, I want to thank You for each and every second of our lives, I know that trials come to make us stronger, but they don't last always. You have a way of making things that seem so big to us, and pressing, turn out to be a small matter. Thank You for grace, protection and love. Amen!

More to come...

Kiddie Pool

http://www.adaptivemall.com/kerstins.html

Never ending...

Since January 10, 2010, my 'sweetpea' has been having spasms/leg cramps, almost daily it seems. Some days they have been pretty bad, especially at night. After her weekly therapy appointments she seems to rest easier, not the case this Wednesday night, she had spasms afterwards. Last night was one of those nights that she didn't go to sleep until late ( 1:30 a.m. ) then awaken by spasms ( light ) around 3 a.m. , then around 5 a.m. she was screaming with a very tight leg...needed a massage and comforting.

I titled this one never ending, because it seems as if these trying times are never ending. I am and will remain prayerful because I know that God is always in control and this is a test of my faith. Lord, I know this will not last always! Thank you!!

At her therapy appointment earlier this week, I was talking with her therapist and trying to see if I could coax her into saying that just maybe her ortho specialist would possibly wait until this fall to perform the hip surgery...she looked at me like that's doubtful. She said with the spasms she's been having lately and the 'popping' of her hip, she didn't know that he would wait that long, but let's see what he will say on next week!

Trials and trying times come to us all and we just have to have the faith that God is definitely in control and will be our guide if we are prayerful and fervent with our prayers and praises. I am a work in progress and I thank you Lord for everything, and everyday!!

More to come...

Happy

I want to come in here daily and write about all happy times. I will, right now, I'm at a very stressful point in my life. I am financially and emotionally desolate. I am still prayerful though. I know God cares and is watching over me! Thank you!!

More to come...

Trying times

The start of this new year, 2010, has been very trying for me. We are still pressing on! I've grown accustomed to appearing graceful and serene on the outside while on the inside there is constant struggle and dismay. Its what a dear friend of mine said is known as 'duck syndrome', on top of the water the duck is moving through the water so gracefully, but just underneath, there's a struggle going on. The duck is paddling like crazy to stay afloat and move through the water.

That's the way it is with me, I'm moving along but deep down I'm battling to stay afloat. Just the past two months there were things beyond my control that needed financial attention, now it seems like I've come to a stand still, there are still things that need financial attention right at this very moment, and payday is not here. There is a very strong indication that I will be out of work from an unknown amount of time because my daughter may be having surgery soon on her dislocated hip. I work with and for her, so when she's not in school, her mom does not get paid.

Like I've said previously, we've been here before, we will make, the faith in God has to remain inspite of all the circumstances. He will never leave us alone, He will not take us to an obstacle if we can't make it through it. God is always in control.

I have been offered assistance, but I think I let pride get in the way and didn't accept it. Now, I'm kicking myself because I didn't take it. I didn't because, at the time I thought it wasn't need and everything could wait until that 'payday', but that's not the case when you are getting calls.

I'm still holding on to that faith, because I know God is in charge.

A verse I'm glad I read today: Through the Lord’s mercies we are not consumed, because His compassions fail not. They are new every morning; great is Your faithfulness. ‘The Lord is my portion,’ says my soul, ‘therefore I hope in Him!’ ” (Lam. 3:22-24).

I'm holding on because God is working on me, I'm changing, and growing!!

More to come...

Life!

First Blog, not sure where to start, but it seems like so much is going on in my life, so that may be appropriate.

If I were able to go back in time to about 9 years ago, you would see a naive young women, not knowing or expecting to be a mom before the year was over. You would see a young mom whose life was about to be changed forever, for the better. June 17, 2002...was a day that will never be forgotten, it is the day I was told that my precious little 'sweet pea' could possibly have a mild case of Cerebral Palsy. I had NEVER heard of it, had no idea what it was, what it did, what caused it, could it be cured, what were treatments for it, nothing.

After many tests, blood work, EEG's, CAT scans, MRI's, the diagnosis of CP came!! I felt devastated, like all the air had been sucked out of me, like my world stopped. I had no idea that her coward of a 'father' would turn his back on our daughter shortly afterwards either. She has had to have a big surgery that left her in a spica cast for two months.

I have to give thanks to God daily for my mom, sisters, and brother and other family members, because of them I still have my sanity and my daughter and I are living life BLESSED. There have been times when it seemed like there was no way of getting through, getting by, but we have made it and continue to do so.

Back to the diagnosis; I cried many tears, but I couldn't stay in that place, it wouldn't have been good for her. I had to buckle down, I started studying and reading whatever I could set my eyes on pertaining to Cerebral Palsy.

Eight years and 1 month later, my daughter is in 2 grade with me by her side daily as her parapro, that wasn't an easy journey either, but we pressed our way through that too ( more on that later).

Now, this present moment, it seems as if my 'sweet pea' will have to have another surgery because of her dislocated hip, an effect of Cerebral Palsy. For the past few weeks, her hip has been popping and lately she has been having muscle spasms causing her to kick her legs and interrupting her sleep at night. We've been here before, this time the surgery will more than likely consist of 'bone work' (if ever needed), through my research and study, she will be in a cast for a longer period of time. We will press our way through this too. God is in control of it all!

More to come...