A New Journey

I am sorry it has taken me so long to get the courage to write this. My journey in life as a mother had taken me down a path I, at times don’t want to except.

In May we had to make a life changing decision. We had to decide to put Jacob in a facility where he gets 24 hour care. I went through a morning faze, because we were living four and a half hours away. Then we moved close to him and even though I try to see him often I still feel guilty he isn’t living with us. This is very hard getting use to. “I honestly don’t think I will ever get use to someone else waking him up or getting him ready for bed” I know lots of people might think, “aren’t you glad to have a break?” I just really don’t know what to do with myself. It’s like you are living in a dream, and you have no control over it.

There are good days where he still at times will smile or laugh. But, it’s just not the same. I want my baby back, who couldn’t hold up his head and nursed all the time. When he laughed out load and uses his Tobii. I know I have made bad mistakes but, I hope I gave him some good.

I need to close on a happy note, I hate not having a happy ending. Even though he lives four miles up the road and I feel like dying every time I leave him, I know he needs me and that when Rose and I sing to him he must feel some love. And I know without a doubt that his Heavenly Father will take him by the hand, very soon and walk him down a new journey one that will never end with nothing but joy and endless food which he will then will cook as the worlds best chef.

Special Mothers

Us Mothers have our own needs. After all :” A Happy Wife is A Happy Life!”

So we special needs mothers need all the help we can get emotionally and physically. 

So no Pitty party is needed. We need to at times vent and cry till we can find our courage again. We are strong but we are imperfect so we do look to God in prayer for the strength that is beyond what is normal.

And good health is very important. “You have to care for yourself in order to care for them!” So I will discuss next what I do everyday to try to keep healthy.

Everyone is different, so even though you find healthy tips, please know you can’t always trust what you read. Plus, if I take something and it has no side effects for me it doesn’t mean it won’t for you. What I can say is that if it was made by God and not man made it usually doesn’t have side effects and it’s usually much better for you. The only down side is it might take longer to get the same results. 

My newest daily regiment  (at least I try to take it every day) is my vinegar drink. It helps with constipation, digestion, and high blood pressure to name a few things it is good for.

2 Tablespoons of organic vinegar  (which should have the word “Mother” on the lable).   4 cups of hot water, 2 Tablespoons of raw honey (local raw honey is best, much less if it’s organic) half of a lemon squeezed and a Tablespoon of cinnamon. 

I also drink Smooth Move which is a tea by  Traditional Medicinals. Warning your gut will cramp and you’ll feel sick getting rid of toxins, but your body will thank you later. I deal with IBS (irritable bowel syndrome) and so I drink peppermint tea which is also by Traditional Medicinals. I also drink Red Raspberry tea by Traditional Medicinals for when I am PMSING. But the best thing I take for my very uncomfortable periods is Female Balance which is a combination of herbs by Nature Sunshine. My mother is a member so I don’t pay the full price (which isn’t that much, and it is so worth the money). 

For my days that I deal with depression, I take Sunny Days an herbal combination I bought not cheaply from Earth Fair. It has Omega 3s and other herbs that help balance your emotions. 

And I drink lots of water. Water is extremely important: it helps with constipation, it helps with inflammation of the muscles which I strain a lot. And with lemon juice it helps with energizing you. And always drink before, during and after a walk, run or work out! 

That brings me to my 2 favorite diets that I have tried and lost lots of weight with. The first is more structured and is harder to find now days : The 6 week diet by Micheal Thermon. The second is the one I need to go back on. The 21 day fix by Beach and Body Works. I got the extreme edition and belive me the work outs are hard and burn. What I liked is the meals were pretty simple and since I am Gluten Free, I was happy that a lot of the recipes were something I could eat. If your going to buy the kit, buy it on Amazon because Beach Body is horrible with their customer service and they tried to rip me off (long story). Plus you have to buy weights and a weight band because it is not included in kit. 

Now a little about Shakeology. The chocolate is a bit Chucky but the taste is tolerable. It made me feel great and I had tones of energy. However 30 bags for $130 which is not a whole months supply is pretty pricey. That being said, there are shake powder alternatives by the tons. I found one that is all plant based and organic and that tastes great and is actually better for you at Costco. You probably can find it on line in a smaller container but I try to buy in bulk what I use a lot of to save money in the long run.  

At Costco it’s about $40 so do you want to pay $130 or just $40 and have enough for at least a month?

What about you, what do you do to keep healthy? I would love to hear from you and see what your doing to keep healthy. 

Today, May 8th I wake up after yesterday’s great successful party for my son. After Thursday I will tell you more about why we had the party. But for now, I am tired. My brain keeps thinking why aren’t you sleeping? Because the dishes need cleaning, and there is plenty more packing to be done. Do you ever wonder why you are brave

Special Children

Here I will discuss everything  from having the right case manager to the right equipment and the health of special needs children.

Do you feel like your re-inventing the wheel? If so, your not alone. That’s exactly what my mother and I felt in the beginning. As a first time parent you have to make decisions like: Do I nurse or bottle feed? And then what brand of diapers should I use? However when your a parent of a special needs child, the questions are over whelming. What you need is a case manager (in SC a case manager at the Disabilities Board) they should be able to answer such questions like: Are there any diapers that will fit my child? Will medicaid pay for the supplies or is there a another organization that will help me? My child needs therapy, where can I apply and how many hours a week can we receive? Can you help my child get SSI or speak to the SSI case worker to make sure he or she is receiving enough? To what age will my child qualify for schooling?

A Case manager as you can see is a very important part of the team. I would like to quote my son’s doctor because he just recently used an expression that has so much merit “It takes a nation to care for his many needs!” In other words you can’t be expected to do all this on your own.

The age and diagnosis of your child will determine what programs he or she will qualify for. The biggest factor is where you live. I had no idea that in some states your child will receive more assistance than other state, but it’s true. We live in Charleston SC which is a beautiful state with mild weather, and beautiful historical places and beaches. We have a large amount of special needs families in the area and there are people out there that are passionate about making a difference, but since my son is such a special case, there really isn’t enough help here for him. “This doesn’t mean you won’t fare well here, it all depends on how unique your child’s case is!” I will say that MUSC is an amazing hospital with many fine doctors. Jacob is just a very unique case and is always keeping everyone on their toes.

One question I had when Jacob was younger is: “What is the difference between PT, OT and SP? Physical therapy is helping a child with movement of their legs, arms and head. Occupational therapy is more to do with the arms, hands, and a little bit of what the PT does. As an example they help the SP with eating, by assisting with providing skills in getting their arms and hands to their mouth. SP or Speech Therapist is not just helping a child to communicate, they help with eating, and with understanding commands. You should be able to get them all at some point to work together.

Now, I would like to discuss the difference between the therapies a child receives at school verses at a clinic or  your home. When children are young they can qualify for therapies in the home. Some therapists are private providers, which means they don’t work for a company.But lots of them still except medicaid to reimburse them for their time. You can take your child to a clinic or hospital where they can receive therapy. The least form of therapy and the least of time they will receive such services are in school ( at least that has been my experience here in this state. Because they don’t get paid enough). When your child is older and is maybe bed bound there is such a service that is called ” home bound services” which are through the school that your child should be going to if they could. This service requires a script from your child’s provider(doctor) who can witness to the fact that your child can’t attend school out of your home.

While Jacob was in school his doctor asked that he stand in a stander so that he could strengthen his hips. What we have learned from the doctor: A child starts crawling to start forming the Acetabulum or hip socket(the curved bone that holds the femur in place) and as the child stands it forms even more, so that the femur ball rolls in place while you walk. Here is an image to help you understand.

a-childs-hip

A stander is a devise that started out as a wooden long board with a foot plate that straps a child down so that they can stand up. Now days they come in many sizes and they all work in different ways, but the main function is to help children with standing up.stander

My son had to use what are called AFO’s on this feet because his feet curve and so trying to put shoes on him, much less trying to get him to stand would have been almost impossible if he had not used these special foot braces. braces

My son qualified for a special wavier that helps pay for some things that medicaid would not pay for. One of these is his special bed. This bed has given him a safe way to sleep, and has saved my back from probably breaking. It’s called a “Sleep Safe Bed.”  I wish that the creators of cribs would consider the way these beds keep from entrapment. safe-bedhttp://www.sleepsafebed.com

Jacob has had many wheel chairs through the years, but we were very blessed to have found two special people who are very passionate about making people comfortable in their chairs. If you live in Charleston Sc theses are the people to trust in making your chair: National Seating And Mobility (Jeff Brown and Jill Monger). They can even help people learn independence by teaching them to drive their wheelchairs.

Do you ever find your self having to make a life changing decision for your child and wish you could find a bias opinion so you can know if it is right for your child? I had to make such a decision and finding a reliable review wasn’t easy. My son has had a hard time gaining weight, because he has so much dystonia and because he is so spastic. I had to decide if a feeding tube would be the right answer. I finally gave in because I didn’t want him to keep loosing weight. There are many types of feeding tubes: Mikey, Button,and a  J-Peg. My son I believe has a J-Peg. I am glad I made the decision because he has gained weight, but it wasn’t easy to get use to. At first it made my stomach up set to see the sight bleed or such(pretty graphic..Lol). You must keep it clean so it doesn’t get infected and you need to make sure to flush the tube so the food won’t get stuck in the tube. If that happens with a J-Peg it will need to be surgically replaced, unlike the button which is maybe to easy to take out and change. I won’t include a picture because some constitutions aren’t strong 🙂

I believe that’s all for now, but if you want to share or ask about any of the devices or services I spoke of please feel free to contact me!