A little piece of heaven

Ask…and you shall receive. After my post last week where I mentioned my desire to integrate everything we’ve done for Nathan into a routine…things changed. It looks like it’s all coming together!

Here’s how it’s all coming together:

1. ABM. Nathan started an ABM intensive today. Victoria came to the house and worked with Nathan for 45 minutes. Our plan is to do ABM every day for the next month or two.

2. ABR. We’ve been communicating with Leonid Bylum, the inventor of ABR, and he’s given us a series of exercises to strengthen Nathan’s neck. I will write a whole post on this soon, but for today, I’ll only mention this as it pertains to Nathan’s schedule. The wonderful Mary is coming to the house every day for 2 hours to do ABR on Nathan. She does the neck exercise for 1.5 hours, and then takes him out for a tricycle ride for the last 30 minutes.

3. Communications. Starting in a week or two, Nathan will have his old speech therapist, the amazing Mrs. Nikki, coming to the house to work with him once a week. She will work with him on the Dynavox and on other communication methods. Every day, we will work on the homework that she gives us so we can start really emphasizing communication with Nathan.

4. OT. The fabulous Mrs. Ronna will come to the house twice a month to work with Nathan on OT / Speech. She will support Mrs. Nikki on building a communication plan for Nathan, and helping us to implement it. Once a week, Nathan’s incredible early intervention OT will come to work with Nathan on traditional OT stuff

5. Education. I am talking to a lawyer so we can get help working with Nathan’s school. More on this later. My goal is to maximize the time Nathan spends at school so it’s not wasted time, and so that the time he is at school he is learning useful skills that build on what we’re doing at home.

6. We found Nanny McPhee. She heard my plea and came to us. Marta is a Colombian lady who we met through another parent of a child with CP in our area. She was looking for a child to love and work with and we were looking for someone willing to “go the distance” with Nathan. She will be helping me to implement all those other things that I was worried he wasn’t getting to do.

Here’s what Nathan’s schedule looks like, as of this week:

8 – 12:30 School
12:30 lunch
1 ABM
1:45 Nap
2:30 Stander / Dynavox

3 Playing on his back / Cold Laser Therapy
3:30 Hart Walker
4 Snack
4:15 ABR
5:45 Pool
6:15 Dinner
6:40 Tricycle

7 Out with dad
8 Bedtime

This will of course change a little, especially as we have to accommodate his Speech therapy appointments, but in general this will be what the schedule looks like. Our plan is to phase out his nap completely since Nathan is almost 4 now and we think he’ll be okay without napping.

So between Mary and Marta we have 2 wonderful Nanny McPhee’s that will help us integrate all of Nathan’s therapies in a consistent manner. I believe that if we can stick to a consistent schedule, Nathan will start showing progress in all of these areas!

As you can tell by my use of adjectives in this post, I am thrilled with the “team” that we have gathered around Nathan and I feel strongly that this team will really help Nathan stay healthy and make progress.

I leave you with a cute video 🙂

PS. Sorry I’ve been out of touch with everyone! I’ve been in hibernation! I didn’t get to enjoy the newborn period with Nathan so I am doing my best to really enjoy every minute of this time with Belle. I keep my phone off most of the day and stay away from the computer. Plus every time I sit down at the PC, Belle squeaks. She likes to be held 🙂 Please forgive my silence!

Today is Belle’s due date. If everything had gone according to plan, she would’ve been born today. I can’t believe she’s already 16 days old!

Many people have asked me why I had her early. Some people (whose name I won’t name but you know who you are 😉 believe I pulled her out early so she could be an Aries. Even I wouldn’t be quite so crazy!

It all started with my prenatal checkup on Thursday, April 15th. The doctor told me I was GBS positive – I had strep bacteria in my birth canal. I ran home and did the research and learned that there was a chance that, if my water broke, she could become infected and this bacteria can lead to meningitis and brain damage.

Having already gone through meningitis with one child, and knowing all of the things that CAN go wrong, I started feeling insecure with keeping Belle inside my body. Belle and I have already gone through enough:

First, I was told that Belle never developed, that she was a blighted ovum and I’d had a miscarriage: A Rough Patch. It turns out the doctor was on crack and it was way too early to hear the heartbeat.

Then I went to Chile and got ecoli infection and ended up hospitalized for 4 days. Of course I was terrified that she had acquired some form of damage from this experience.

Then I had terrible contractions when I missed my flight from Chile to Colombia in December. Another terrible trauma.

When I finally got home to LA and went to see the high risk doctor, I was told she had a defect in her heart and that this was a possible indicator for Down Syndrome. Having gone through what I’ve been through with Nathan, I know I would warmly welcome a baby with any condition, so I didn’t suffer from this news. However, it was a source of worry and tough to think about.

So having gone through all of these issues with Belle’s pregnancy, when I heard I was GBS positive, a part of me felt afraid to continue to keep her in my body. I spent that whole night awake, praying, wondering what the right course of action was. I felt ready for her to come. I felt terrible fear that something would go wrong with the delivery. All of a sudden I didn’t have confidence in my body’s ability to protect her – my body felt like her greatest threat. Every ounce of intuition told me that it was time for her to come.

My night of prayer confirmed that it was the right choice. I was ready to go on Friday, but decided to wait until Saturday to give myself time to feel secure in my decision. Friday I prayed and prayed, and still felt ready.

Saturday we woke up early and made our way to the hospital at 7 am. I hadn’t talked to the doctor so he had no idea what I was planning. I simply showed up at the hospital and told them I was ready to have my daughter. The nurses almost laughed and me and told me it was almost certain the doctor would send me home. At that point I offered it up to God – if it was the right time for Belle, I knew he would make it happen. And if it wasn’t, I would be okay going home and waiting.

At 9 am the nurses called the doctor. At 9:30 they came to tell me the doctor had agreed to do the C-section that day, and that he would do it sometime after 10 am. At that point it was just me at the hospital, Owen and Nathan were having breakfast and my family hadn’t arrived.

Owen and Nathan showed up at 10:30 am. At 10:45 the nurses popped in and said, “are you ready to have your baby??!!”. I couldn’t believe it was happening so fast!!! I thought I would have hours and hours of waiting!

I called my mom and she hadn’t even left her house at that point. Which meant I would have to go in for surgery alone so Owen could stay with Nathan. At that point I started shaking. What have I done, I’m not ready for this, what have I done, oh my god oh my god oh my god. But there was no turning back.

At 11am on the DOT the doctor showed up at the surgery room. I was already prepped for surgery. At 11:15 the started the anesthesia. And at 11:20 one of the nurses saw me there, shaking and crying, and decided to go outside and watch Nathan so Owen could come inside the operating room. Owen came in and I grabbed on to his hands for dear life, and oh, the comfort I felt from his presence! The moment he walked in I knew everything would be okay. Within 5 minutes I heard Owen say, they’re reaching in! And 3 minutes after that I heard a very angry howl. Wahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh! At 11:28 am Isabelle was born with a roar.

The anesthesiologist, who knew about the risk of Down Syndrome, immediately came to me and said, I see no markers for DS, your baby looks perfectly healthy. They took her away to examine her, and all the while I was laying there, gutted, asking them to bring my baby. They took several minutes before they finally brought her to me and I absolutely melted the moment I saw her and touched her little face. Love at first sight X 3.

My mother arrived at that moment so she took care of Nathan while Owen cut the baby’s cord and while they put me back together. And the rest is history. I went to the recovery room and they wanted to keep her in the nursing station for a few hours. I demanded they bring her to me instantly and we’ve been inseparable since 😉

After an eventful pregnancy, I finally got to meet and glorify in my little princess’ presence. Was it right for me to pull her out early? It was right for me. I don’t regret it. And I am thrilled to have had 2 weeks with her already.

Belle is thriving. She is eating well. She is growing. She could smile from the first day she was born. She has already chuckled several times – I have witnesses. She smiles if you oogle at her and no, it’s not gas – she smiles appropriately. When she’s hungry, she just gives us ONE very high pitched shrill scream. She’s only cried a few times since her birth – she’s a very content baby. She eats well, sleeps well, and is a total cuddle bag – she loves sleeping in mommy and daddy’s arms. She’s already a daddy’s girl – the moment she hears his voice she starts looking for him and will wake right up so they can hang out. Owen holds her in his arms and walks around and shows her everything. She loves her time with him. Even though she’s so young, I already know so much about Belle – she is sassy, sweet, peaceful, and very happy!

The beautiful photos of Belle were taken by Nathalie Seguin. As you can see, she’s an absolutely FABULOUS photographer. If anyone lives in the LA area and is looking for a great photographer – look no further!

I absolutely LOVE this post from Red Haired Mama (thanks Katy for the link!!)

The difference between you and me

I can’t agree more with what she says!

OK back to newborn land, bye for now!