the much awaited, much anticipated, oh-so-wonderful update

The more I put this off…the more I put this off. The longer I take, the more there is that happens which means the more there is to write AND therefore, the more I put it off. You get the idea. Hence, it is time to suck it up, take the time and write “the much awaited, much anticipated, oh-so-wonderful update.”

Hope in a hat

Now, if I can just figure out where to begin.

The last time I updated was in December, and I can’t believe how much has happened and how much Hope has progressed in such a short time. The easiest way to update is to give a rundown of all that she is doing and what has changed.

Can you believe this is the same baby??

Can you believe this is the same baby??

The biggest news came AFTER I first started trying to write this post. I spoke with her neurosurgeon on the phone about the results of an MRI he had done in January. He said that not only is her shunt working fine, but that the scan of her neck showed that she does NOT have the Chiari II malformation! (Read previous post regarding that diagnosis here). If you remember, she almost had a scary decompression surgery back in July to correct it….something she doesn’t have! God is so good!

Hope just had her 9 month check-up (a little late) and weighed in at 16 lbs 2 oz! Her height was 25.5 inches. She is now in the 3rd percentile for both, unless they adjust her age for prematurity. In which case, she is in the 10th percentile for weight! She is getting quite chunky. Adorably chunky! She has now moved totally to a crib because she’s gotten far to big and long for a bassinet – not to mention how much she moves.

We saw the pulmonologist for the first time, and Hope is now taking an inhaled steroid twice a day to improve and heal the lung damage done by repeated aspiration and multiple bouts with pneumonia and bronchitis. Incidentally, she hasn’t had a recurrence of either since starting the steroids. We are also currently weaning her off of oxygen during the day.

The pulmonologist referred us to a cardiologist – the only specialist we hadn’t seen – just to be sure there were not problems there. They did an EKG and an ultrasound, and she got a clean report from them. It’s wonderful to have one specialist we don’t have to revisit.

Hope is doing wonderful in all her therapies. She is reaching, shaking rattles, manipulating toys, and banging blocks. Keep in mind that it takes her more effort and concentration than the average child, but she is doing it. She can now shake her head yes and no – which she find quite amusing to tease us with. Her physical therapist is working on things like kneeling and getting her on all fours. She loves to play, especially with faces and hair.

Working on kneeling

Working on kneeling

Touching my toes!

Touching my toes!

This all fours thing is tough

This all fours thing is tough

The only negative thing about therapy is that her speech therapist had to cease many oral exercises after the last swallow study. She cannot currently do anything that might stimulate her to produce more saliva to aspirate. However, Hope has begun to vocalize sporadically. She squeaks every once in a while to get attention. This is a big deal as it requires her to push air past her airway to make a vocal sound, so she’s learning.

All in all, Hope is doing amazing! If anyone had told me 8 months ago, we’d be where we are now, I don’t know if I would have believed it. She is a constant joy to everyone – so full of smiles and laughs. You can’t help but love her.

While I’m at it. The rest of the family is doing great. The hubs got promoted in November (can’t remember if I shared that) which has been quite tiring, but a financial blessing.

My oldest will be 4 at the end of this month. FOUR! Where did the time go? 3 going on 14 and smart as a whip – with a mouth to go with it! I’m about to start teaching her to read. She’s more than ready. This kid is going to be a world-changer. She could probably school some adults on the Bible. Smart, sassy and sensitive. That’s my Grace.

DSC08803

Proud big sister

It has also become more and more evident in the last months that my middle child (oh, poor middle child) is a true strong-willed child. Time to read up on some Dr. Dobson again. I don’t know what to do with her. She’s 2, but has no idea she’s not 4 or 5 – as commented on by a random mom at Monkey Joe’s. No ma’am. She has no idea she’s not 5. She’s fearless…which is why it makes it so darn hard to put the fear of God in her. Lol. Oh well, I know one day I’ll be glad she’s so strong-willed. Just when it’s against others and not me. I’ll tell you one thing about her though, she’s a hoot. I said it when she was a baby and couldn’t stop smiling, and I was right. She is going to be She is the clown. Joy is such a joy. Strong-willed, but a joy.

No clue she isn't grown

No clue she isn’t grown

We recently took Joy’s paci away. Don’t judge me. She only still had it when sleeping, and I’ve been a little slack on starting and stopping things with her during this season of our lives. I’ll admit that sometimes I do whatever makes my life easiest, so long as it’s not truly detrimental in the long run. I’ve only just started trying to potty train her, but even that I can’t seem to do full-on. After spending 2 years trying to get it to work with Grace, I just don’t have the drive to try so hard this time, and really, who can blame me for not having the time or sanity to let her run around half-naked and sit in the bathroom with her every 30 minutes? She’ll get it. After everything I tried with her sister, it just had to click for her. I’m hoping it will click for Joy.

As for myself, I have committed to be a contributing writer for a well-established homeschool blog that is becoming a group blog. I’m really excited about this opportunity to work with a great group of writers, learn more about blogging, possibly learning how to improve my own blog, and maybe even supplement our income a bit. I will definitely direct you over there once the revamped blog is launched. It should be in the beginning of April. I have already written my first draft for my first post, and you can be sure I’ll be linking up my posts here. Look for more info to follow.

Before I wrap it up, I have to say, it’s been quite a lovely weekend. My husband was off of work per doctor’s orders because he has the flu and bronchitis. However, he didn’t feel as awful as it sounds. It was, however, his first days off in 3 weeks. These last 2 days have felt more “normal” than any day in quite a long time. We had no nursing help and no therapies (since it’s the weekend). It was just us. Just the 5 of us. We watched movies, at pizza, popcorn and chicken wings, laid around in our jammies, read books. Even with me doing everything AND taking care of Hope’s needs, it felt the closest to “normal” life as I can remember in a very long time. It was nice.

Whew. Update done. That wasn’t as hard as I thought. I mean, it’s 12:30 am, but it wasn’t so hard. Why did I put it off for so long? Sorry if it seems somewhat haphazard and disjointed. It’s late, I’m tired, and people are asking for an update.

Wonder how long it will take to write the next one?

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2 comments on “the much awaited, much anticipated, oh-so-wonderful update

  1. Jenni Shaver says:

    I think you are awesome! I am amazed by your story.

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