So I am sure you noticed I just disappeared for a while. Don’t worry I didn’t fall off the face of the earth! It started with my kids and I all catching really bad colds that seemed to never go away and then just out of nowhere everything became so overwhelming for me! I had total writers block…and to be honest I just have felt depressed and like not wanting to talk to anyone or really talk about everything that’s going on. It wasn’t because I don’t appreciate the support or anything it was just a personal conflict with myself. I had a rough few weeks. I have just had to take the time to just breathe! It has been such a roller coaster with Jaxson and I had gotten so busy taking care of everyone else that I had been neglecting myself and not taking my thyroid medications which results in some crazy mood swings for me…..sorry hunny!! But I am back to taking my meds and have been praying and have just came to the conclusion that Jaxson may have Infantile Spasms but infantile does NOT have Jaxson or this family! I will not let this condition hold us back! We are going to keep praying…keep fighting….and start doing everything we can to raise awareness and let God guide us and watch as his plan unfolds!
I am so glad to be getting over this funk! It just hit me like a ton of bricks! I am still having trouble reading other IS blogs, forums, and information pages. I am finding that if I research too much I start worrying about the could be’s in the future instead of living in the moment with my son and rejoicing every little thing he does! Speaking of while I was gone he rolled over for the first time! I couldn’t of felt more proud and it gave me just the jolt I needed to realize my baby is strong and he is gonna keep fighting! I don’t know why I dwell on his future and worry that if he does end up with brain damage or not being as developed as he should be that people will judge him or treat him different ..I guess it’s the momma bear in me… I just want to protect my baby and I want the best for him! But I know deep inside that the people who matter will love him for who he is and the people that have a problem with it don’t matter! I know God gave this little boy to us for a reason and that he is gonna touch lives and he is going to do great things! All of my babies are a blessing and I don’t know what or who I would be without them..they truly are what keeps me going and the reason I wake up every morning!
Just to update Khy is almost done with her early preschool and I am excited and sad at the same time because she loves it but I am excited for the summer and the activities that we can do! She has come so far with her socialization …the reason we sent her…she doesn’t seem shy at all now! She is such a smarty pants..I love it! I hope she keeps her passion for learning and runs with it! Adelynn has just all the sudden started acting so grown! She is speaking allot more..saying lots of words and even speaking in sentences! She is showing a more of an interest in her brother which is awesome and adores Khylee..they are quite the friends bffs one minute and fighting the next! We have been dealing with food allergies with Addy but they don’t want to test her until she is 2 …so far she is highly allergic to Apples and Pears and has had random breakouts to tomato, blueberries, and things I don’t even know what caused it! She has grown quite independent and is always into things….like the dog food this evening!!! Jaxson has been happy most days but we are still working on his schedule. He hasn’t been a very good sleeper at all! He too seems to have food allergies..pears and carrots! We have had a neurologist appointment recently and learned we will be having to do another hospital stay for an MRI and another 24hour EEG. We are praying we get some answers!! We also had our first appointment with Minot Infant development (Early Intervention) and got all the paper work done…Jax automatically qualifies because of his disorder. We are supposed to get a call back next week for his first appointment where they will assess him and come up with a plan. I am so excited…I really think it will be beneficial to him and us as well!
I have been trying to focus my attention on things to better myself and my family. I am trying to find ways to move forward and keep going! I have started making tons of homemade snacks for my kids….crackers, fruit snacks, fruit and nut bars, healthy cookies…all sorts of things which are not only healthier but make me feel better since we have kiddos with allergies. I can control what goes in them and it will make it easier to pin point what caused the reaction if they have one! I have got to redo my living room and have gotten lots of new kitchen gadgets like my dehydrator …LOVE IT! I even get a spa day this weekend and can NOT wait! I am so excited! I really need this and am so happy my hubby got this for my v-day present! But my most favorite new happening is Jax’s Pin Project! March 26 is Purple Day for Epilepsy Awareness. You are supposed to wear purple to show your support! Anyways in honor of that I have come up with a plan that is for Jaxson but is something I have to admit I desperately need! Ya see I could of just came up with a fundraiser and donated the proceeds to the Epilepsy foundation but luckily for Jaxson he gets not only an awareness day but an awareness week! Infantile Spasms week is sometime in the Oct./Nov. time frame (I will keep you updated as I find out more) so I thought I would wait to fundraise until then because I.S. gets so much less spot light I really want the donations to go to Infantile Spasms Research and families trying to pay these crazy medical bills! Anyways back to my plan! I was thinking of how hard it is to be away from all of our family especially with another hospital stay coming up and how alone we feel at times. So I came up with the idea to make a button/pin and order them and mail them out to anyone who would agree to wear it (and purple!) especially on March 26th and take a picture of themselves wearing it and post it on facebook (make sure to tag me!). My goal is to raise awareness but also to create the biggest support and prayer network possible for Jaxson and our family! I want people to look at the pin and be intrigued to find out about our story…about Epilepsy and Infantile Spams… I hope they will pray for my son and that it will give them a new appreciation for their healthy children/life…that someone who is going through the same thing can benefit in some way… and that they can have the chance to see that our God is an awesome God and that he is creating beautiful blessings to share with the world every day and that miracles do exist! ! I am going to print out all of the pictures and create a collage for him! I am going to hang it so that when we need support or feel alone we can see it and if Jaxson beats this he can look back at how many lives he has touched and how many people supported him but if he is still fighting I know it will bring peace and comfort and strength to him to know that so many people from all walks of life love, support, pray, and care about him! I am hoping that this will turn out amazing and that with all of your love and support and thoughts and prayers we can kick Infantile Spasms BUTT!!
I really love you guys…thank you so much for your understanding! I am going to stick around this time because I really do enjoy sharing our lives with you!
<3 Kessiah
"For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well. "
Psalm 139:14
