The Results Are In

I know a lot of you have been anxiously waiting for Tennyson's lumbar puncture results right along with us for the past two weeks. I know you have been praying for her and I want to thank you for any time you spent praying to God on Tennyson's behalf.

Tonight we received the news we have all been praying for! Tennyson will be treated for cerebral folate deficiency! I can't even describe the happiness our entire family is feeling right now.

I'm writing through tears right now - happy tears - but I can't seem to control this renewed sense of hope and confirmation that God is faithful and has an incredible plan for this little girl.

This is how I found out tonight:

I called earlier this morning to check if the results came in yet. Nobody answered so I left a message. When 4:30 p.m. rolled around, I figured I wouldn't hear from anyone and decided to just check back tomorrow. I needed to go to the grocery store, so I left the sweet girl with the husband and headed to Walmart to shop in peace. I was on the phone when they called and I had to hang up quick with Tennyson's Nana so I could get the call. Eeeek! They were calling!

I answered the call and it was our neurology nurse practitioner (we like her) and she let me know she literally received the test results about 5 minutes before she called me.

Eeeek! She had the results!!!! She said they wanted to treat Tennyson for cerebral folate deficiency! I think I squeaked out, "that's so cool!", and already started crying.

She said that the normal range for folic acid was between 40 and 150. Low numbers are more deficient; higher numbers are less deficient. Tennyson's results came back with her level at 46. She is considered borderline deficient, but the doctor whom reviewed her results recommended treatment. She also mentioned the doctor was a top specialist on CFD and I couldn't have asked for a better doctor to be reviewing Tennyson's results. She said they were hopeful for Tennyson to make progress once we began treatment. We start treatment tomorrow! She already faxed in the prescription to our pharmacy.

I'm sure I looked a little mentally unstable as I was tearfully grocery shopping this evening. I was overcome with emotion. I don't think I realized how badly I wanted this for Tennyson. It's an incredible feeling to feel hope again. I mean, I've always had hope for Tennyson's progress, but this just feels differentt. I think it's because the doctors sound so hopeful. They are usually more reserved. I might get to hear my daughter say, "I love you", or have her reach out to give me a hug, or watch her learn to walk. Those were things I never realized I wanted so badly.

My mind just raced with all the things that she could potentially do. At one moment, I realized I was just standing in the produce section staring at the floor with tears on my cheeks. I was probably starting to scare people. My husband called and I told him the good news. When I got home and walked through the door, we all hugged each other as I held Tennyson.

Tomorrow is the first day of the rest of our lives. I have a feeling we are all about to witness a miracle and I'm so excited all of you will be right here to witness it with us!

e-mail me at tennsense@gmail.com with questions or feedback!

Amy

My First Blog Post!

I had this image in my head of my perfect blog and what I wanted it to look like and well...it's not quite there, but I'm working on it. I couldn't wait any longer though, I wanted to actually write something!

So welcome to my blog! I've been contemplating blogging for some time. The main focus of the blog, (if you couldn't tell from the name) is Tennyson. My main purpose is to educate people about her, about her diagnoses, about our journey from where we began, where we have been, and where we are now with her. I'll throw in a little about me (my sewing and craft projects and cooking creations), but you probably won't hear much about the man in our lives - he prefers to stay out of cyberspace.

I have been following a few blogs for some time now. Each one has an adorable child, either with cerebral palsy (CP), or some other developmental delay. Early on, those were my only connection to other people with non-typical kids. They validated my emotions and feelings and made me feel like a not so crazy lady. I hope you will bookmark us and check up on us :)

I don't post a whole lot about Tennyson on Facebook, other than celebrating her awesome accomplishments with people who love her. Mainly because people who don't know a lot about her tend to initially feel bad or feel sorry for her; and that is not what I want. She's certainly not lacking in the love department and honestly, she is one of the happiest children I know. No reason to feel bad for anyone in this house. We are blessed, no doubt about it.

So we are going to cover it all and I'll try and keep it real and honest for you. I'll post about my pregnancy, her birthday and NICU stay, the first year, feeding problems, GERD, getting the diagnosis of CP, microcephaly, doctors appointments, therapy sessions, weight checks, developmental delays, having a feeding tube, seizures and epilepsy, chromosome abnormalities and being truly "one of a kind", our amazing family, our amazing friends, how seriously adorable Tennyson is...etc. (you get the idea). I will share her millimeter-stones, and I'm sure you will quickly realize we celebrate just about everything around here - right on down to going to the bathroom.

We'll see how this goes. I don't have a plan to post daily or anything like some of the more seasoned bloggers I follow, but when inspiration strikes, I'll share it with you.

Amy