Thursday, May 26, 2011

Yeah! No School

First week of no school and Brayden has to be sick. He is feeling better now but still has coughing and congestion. We were at the lake Sat and Sun and he had a good time despite feeling so crummy. We are going to have some fun this summer and sleep late every day!

We have started back on Baclofen along with the Artane to help with his tone. I missed our appt with the rehab clinic and the next available one isn't until July 20th. We are going to see about getting botox again in his hamstrings to help with his tone. Waiting 2 months for an appointment aggravates me.

Our nursing hours are being whittled down to 16 hours a week thanks to GAPP who says he doesn't need nursing care. Yeah, you come take care of him for a day and you'll change your mind really quickly. Not even going to get started on that subject.

We hope to have all the sickness out of the way! We are ready to have some fun in the sun!****Happy Summer******

Thursday, May 12, 2011

F*** You GAPP

The whole medicaid system disgusts me, especially the Georgia Pediatric Nursing Program. GAPP is Georgia Medicaids medical service program for in home nursing care. Since Brayden is no longer on oxygen he does not qualify for home nursing care. Really??? A quadraplegic with a feeding tube, who has cortical blindness, can not talk, and the cognitive development of a 3 month old does not qualify for home nursing care!!! Oh the things I wish upon those people!

Tuesday, April 12, 2011

If I could turn back time

3 years ago today our lives were changed forever as we began our journey of healing. Who would have imagined that something like this would happen. It was such a perfect day. I would give anything to be able to turn back time to have my perfectly normal little boy back.

Today is a sad day as we mourn the loss of the little boy you used to be. Today is also a happy day as we are so thankful to still have you with us in our lives. We begged, pleaded and prayed for you to stay with us and you did. You are my little fighter who never gives up.

You came back to us just as as a shell of the little boy we once had. You looked the same but everything was gone. Nothing would ever be the same. It has been a tough journey so far but we are making progress. We have slowly been getting pieces of you back and we will never give up until you are whole again!

We are so glad to have your infectious smile and laughter back. You infect everyone you meet with your happiness. You were meant to do great things in this world for you have cheated death more than once in your lifetime already. We Love you ♥

Well it has been a while again since I last posted. I thought I would give an update. Brayden has been doing very well. I think we have finally gotten his medicines adjusted right and he has been great. No more incidents of biting his finger! He has been enjoying the warmer weather and getting to go outside...minus the mosquito bites from the trip to the park.

On a good note, we did get a new van. It is not brand new but, it has a wheelchair lift! No more lifting that heavy wheelchair and getting him in and out of it into the car seat. So much easier and no more back breaking lifting that heavy wheelchair.

Spring break was good with a little bit of allergies flaring up. Brayden continues doing regular therapies at school and at Advance For Kids. We are trying to possibly get a gait trainer for him, just hope it doesn't take a year like the stander did. His sleep study that was done showed no desats in his oxygen level while sleeping. So no more oxygen needed now!!!! We have come a long way from that trach baby! Keepin on, Keepin on with the progress!!!

"May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us." ..."
— Mother Teresa

Tuesday, February 1, 2011

Has it really been that long?

I haven't posted in a while so I thought I would give everyone an update. Brayden is doing well since having his tonsils and adenoids removed. He no longer has the rattly, wheezing that always made him sound like he was sick. He no longer requires to wear oxygen at night, his oxygen levels have been great. He has only been sick a few times this winter vs. being sick from fall to spring. His swallowing has also greatly improved. He is doing much better health wise and has even gained some weight.

We have been doing some changes with his medicines, he is no longer taking baclofen and is taking a new medicine called Artane. Not really sure if it is going to work though. He is moving around a lot more taking the new medicine and being more verbal but, he is also very stiff. We will see what they say when we follow up at the Rehab Clinic.

He enjoys school and continues to be his usual always happy, smiling, laughing self. He had a great birthday and Christmas and rang in the New Year with all smiles. We are just continuing with his regular therapies at this time and hope for some new improvements this year. We have discovered that he can activate a switch with his head to make choices of things. We hope to work on that more this year.

We are going to have a swallow study done tomorrow just to make sure everything is going where it should since having his tonsils removed. He seems to be swallowing fine but we just want to be sure. He has progressed some and is eating stage 3 baby foods now. I think this has been hindered some by the medication changes because he now has his tonic bite reflex back. (Tonic bite reflex is jaw closure accomplished by forceful, sustained upward movement of the mandible. It occurs following stimulation of the teeth or gums. It is accompanied by increased abnormal tone in the jaw muscles. It is difficult to release. Damage to the teeth or to the object placed in the mouth may occur. The tonic bite increases if the item is pulled on.) He will clamp down on anything put in his mouth even his fingers.

We hope to see some new improvements this year and I will try to update more often.
Here are some pics!

RIP Peanut, Feb 2008 - Jan 2011. You will be missed!

The new babies