Supplemental newborn screen

Are you or is someone you love expecting?  Ensure your baby has the best chance at a healthy start to life through Supplemental Newborn Screening.  Order your kit today no matter what state you live in!  For $50-$100, depending on what you would like tested for, its worth it.  If only we knew about this simple test.
http://www.huntershope.org/site/PageServer?pagename=unbs_supplemental

For all parents, especially parents to be

All of our babies were screened at birth for diseases by a simple heel prick. Each state has their own unique list of diseases they screen for. But did you know that there are NO STATES that include all possible potentially fatal, but treatable, diseases? Only a few states screen for Krabbe, is your state one of them?
Find out what your state screens for by clicking the following link:
http://www.babysfirsttest.org/newborn-screening/states

First seizure :(

I have some sad news. Although William is doing okay now, he had his very first seizure this morning. It is considered to be a partial or focal seizure. This is brand new territory for us as this was his very first so I have a lot of learning to do. What I do know, after speaking with his nurse, is that there isn't any interventions for a partial seizure, as they remain alert (part of Krabbe Disease progression we cannot control). What it looked like to us was his eyes were rolling up and down, not quickly, kind of like when you're watching someone watch the credits of a movie. It lasted about 30 seconds and both Robert Branch and I were there to talk to him. We believe the trigger was me opening his bedroom door (the sound startled him), as he cried out and then the seizure began. William didn't look scared or anxious, but did look tired afterwards (although he gave Mama a smile when I asked him if he was okay). He's the sweetest little boy I have ever met and I will never understand why this is happening to him. Yes, he was transplanted but also at a point that his body will continue to fail, rate unknown although much slower than had he not been transplanted.

As this is an isolated incident, no action will be taken (as we were directed). He is already on seizure prevention medication, and that obviously will be titrated as needed, secondary affect will be lethargy. If another happens before our trip to Pittsburgh in January or so (we've almost hit our goal to get there, thank you for those that have donated!) We will see his neurologist in Salt Lake City for an EEG.
I am terrified. Please think of our little one and hope this was something that is not going to become the "normal" for him. He's been doing so well.

Please join Williams facebook page

https://m.facebook.com/sweetwilliamswarriors/

1st head start visit

William and I met with his Early Head Start teacher today.  I had met her previously, but that was the first time William and Vanita OBrien met.  I think he is going to love her.  Carolyn Branch was holding him, and when Vanita was talking to him he kept looking back at Carolyn because he wasn't too sure yet (as he does with new faces).  But after a few minutes, he was making eye contact with her and sucking and moving his lips, all things he does when he feels safe and comfortable (or getting what he wants.)  Miss Vanita also brought him new toys to play with and they are just perfect for him.  She has a huge heart and I look forward to collaborating ideas with her.

I was apprehensive about him being ready to start "school", but I couldn't put together a more perfect combination: home visits, a great, wonderful, caring teacher, lots of new resources, and a stimulating environment for our little William.

Besides starting swim lessons, we will now be taking advantage of our local library and their toddler story time.  William loves books and being read to.  Anything with bright colors, music and anything tactile he can feel with his hands he loves.

We also have speech tonight.  We are working on prerequisite communication skills to eventually try out some communication devices.  He's almost 18 months old and is communicating quite well, I think!  He sure tries!

We are also getting some visitors tonight! Uncle William Branch, Aunt Angela Rankin Branch and family will be here soon.  William loves his little girl cousins and I love seeing how well they play together.

As for me, I feel like a got hit in the nose with a softball (because I know how that feels), just being a few days post septoplasty.  No bruising, but lots of puffiness.  I look AMAZING! 😤 So glad I can lay down a little bit with Grandma Carolyn taking care of William.

Much love from Utah.  Thank you for pulling for our little guy.  He needs a lot of support, and prayers, and love!

William got accepted into Early Head Start!

William got accepted into the Early Head Start Program! Head Start is an amazing program that will help support his mental, social, and emotional development until he turns 3, and then he may transfer to Head Start or another pre-K program.  It also is a way for Robert and I to meet some other families in our community.  We are very fortunate as most of the time this program is for lower-income families, but sometimes they make exceptions.

We are very excited for this opportunity!

With the Early Head Start program, an early childhood educator will come into the home with supplies and ideas.  We are not sure of frequency, but I believe it will be at least weekly.  I've already met the teacher and she is great!  I believe it starts next week!  There will also be group meetings with parents and their children monthly if not twice monthly, and again, I'm excited to meet other families.

As always, we are setting the bar high for William.  Although he has severe physical limitations, he is proving every day that he is eager to learn and communicate!

Head Start is separate than the early intervention program he is currently enrolled in.  Within the early intervention program, he gets at home physical, occupational, speech therapy and also baby massage. 💙

16 months old!

Couple of big things going on for our little guy:
1) I applied William for early head start today.  We are over the income bracket, but there are about 10% of kiddos that get accepted anyway.  The program is birth through age 3, early childhood teachers make home visits for about 1.5 hours weekly.  Fingers crossed he gets accepted.  Raising the bar for our little man.
2)  Williams speech teacher/communication specialist makes her monthly visit this afternoon to our home.  We are working on pre-req skills to master before looking into an appropriate communication device.
3) Our rec center has heated pools so starting tomorrow William will start swimming with mommy.  I hope he likes the water as much as Robert and I do.  It should feel very good for him, I hope.

Other than that, William is doing extremely well and surpassing where I thought he would be at this point.  He is getting irritated and bored and keeps us in our toes keeping him entertained.  He is smiling, has several facial expressions, and for some reason or another fusses more when I'm around!  Grandma Carolyn is doing so well with him, and I'm able to get so much done outside the home.  Then when I come home, he fusses! What's up with that? 😄  Now that he's over the ear infection and teething (for now), he's back to his routine and sleeping all night. 😴

Thank you for all of your prayers!  Keep them coming!  He's growing so fast!