Saturday, March 19, 2011

MRI, metabolic testing and immunology...oh my.

I'm back! whew...what a long month of no computer. I felt lost without it. So much to catch up on. It feels so good to be able to write on my blog again! So without further adieu....

Kenny was seen by his neurologist a few weeks back who wanted him to get some metabolic testing done along with an MRI to give us some answers to some issues with him, so this past Monday we were at the hospital getting his physical for his sedated MRI this coming Monday. I cant say that I'm not nervous, anytime he has to be put under anesthesia I get worried. Part of me wants nothing to appear, but the other part wants the answers as to why he's not talking or eat a lot by mouth, why his gait is so wide when he runs, why the muscles in his legs/arms are tight, and why he is so developmentally delayed. I know that he's a micro preemie...and I know that being born at 23 weeks doesn't come without some disabilities...and I also know that it could be a lot worse. I am grateful for how awesome he is doing, but as a mom, I need to make sure we know exactly what is going on with him so we can work with what we are dealing with.
We are also hoping for some answers from Metabolic testing that the neurologist ordered. He wants to see what is going on with every part of his body, so Kenny had to give 5 big viles of blood....and let me tell little guy is a toughie! He sat on my lap, I held his arm...and when they put the needle in...he never cried! He made an owie face, but not one tear, scream or sound came from him. that brings us to this past Thursday when I went to Kenny's immunologist follow up appointment (from a year ago). Apparently the doctor found something in the blood work that would explain why Kenny gets so sick, so often and really wanted to talk to us about his findings. Many thoughts raced though my brain...from... "omgosh...many, many blood and platelet transfusions while in the NICU...could that of caused something serious?" to "hopefully its just an allergy from something". So what did the doctor have to say? Well...apparently some of the vaccines that Kenny has been receiving since the beginning are just not working. Either the levels of them in the system is way below what they should be or they are just not present in his system at all. He has an immune deficiency. He explained to me that we can go somewhere and be exposed to something and be able to fight it off with just a cold....when Kenny's body comes in contact with some bad germs/viruses, he has nothing to fight it. I was taken back by this, but honestly...I knew that something wasn't right. Call it mothers intuition, but he gets very sick all the time...something that after having 8 kids, I can really pick up on. lol. I honestly dont know much more than this...I dont know what to expect. If its life threatening. If it is just a simple problem that can be fixed with meds...I honestly wont know much until the next doctor appointment.

Where do we go from here? Well, Monday is his MRI...they will also be taking a urine sample (for the metabolic testing), so they will take some more blood then and do a final test that the immunologist needs. He told me that he didn't want to throw too much info on me at one time, so we then will go back in 2 weeks to go over everything and what his plan of attack will be.

It has been a crazy couple of weeks...a lot to take in and process. All I really know is that Kenny is a miracle and everyone that crosses his path smiles back at him. He is a blessing to us and we are so thankful that he's in our matter what the outcome!


J9 said...

Keep us posted! Xoxo

Unknown said...

Hello, my name is Jesse Boudreau and I am part of the media team for Tami Gaines. Tami is an authority in the "preemie baby" genre and has recently published her book "Preemie Parents: 26 Ways to Grow with Your Premature Baby."

Tami recently had the pleasure of viewing your website and is planning to be a regular visitor to your blog. Fantastic work! We would like the opportunity to partner up with you and add even more value for your readers. Here are some of my thoughts:

* I am interested in finding out more information about how she can get a link to her non-profit organization, Preemie Parents Foundation, and possibly her website, Preemie Parents, included in the sidebar of your blog.

* She has some Youtube Videos posted dedicated to Preemie Parents and I was hoping you would consider posting it onto your blog and making some comments about it. We all know how visitors LOVE video :)

* We have launched our Affiliate Program and feel that your website visitors can really benefit from the items that we are offering, especially her book "Preemie Parents: 26 Ways to Grow with Your Premature Baby." I invite you to check it out.

I would also like to cordially invite you to share your blogging skills and be a guest blogger on the Preemie Parents website as joining us in our Forum so that you can continue to share your ideas with our readers.

Here is her short Bio:

Tami C. Gaines, the mother of four children (including preemie twins), has achieved national recognition as an advocate and spokesperson for preemie parents. In addition, she has an accomplished background as a marketing and business strategist, motivational speaker, and trainer. In the business world, her impressive client list has included such companies as The Marriott Corporation, Goldman Sachs, Bank of America, Consumer Reports, Unilever, and The Commonwealth of Virginia. Drawing on her holistic perspective on business and personal growth, she has helped thousands of people come closer to achieving their personal and professional goals. With an M.B.A. from Columbia University and twenty-five years as an entrepreneur and executive, Tami could not have foreseen the events that would take her from the board room to the hospital room. In "Preemie Parents: 26 Ways to Grow With Your Premature Baby," she helps parents learn to cope — as she has — by opening their hearts to learning life’s lessons. She resides in Montclair, New Jersey.

Thank you for your time and I look forward to hearing from you.

Best regards,
Jesse Boudreau
Media Rep - Tami Gaines - Main Website - Forum