Updates and Becoming “That Blog”

Things have begun to settle into a routine around here. I don’t know if it’s just that we are getting used to the lack of sleep or if it’s just getting easier but either way we are becoming a family of four.
Ruby is extremely gassy and fussy. To say that we are stressed and tired is an understatement.
The pedi officially said today that she has colic and reflux. So that’s been fun. But at least we know why the last three weeks have been so rough. We put her on a strict 3 hour feeding schedule, removed the breastmilk, started soy formula, gripe water, probiotics and added Prevacid. At least she’s not projectile vomiting? Lol
She’s miserable and tired. We are too and we want to help her. And sleep.
The doctor also called us about her newborn screen. She screened slightly elevated for CAH- congenital adrenal hyperplasia. We went back for more bloodwork and to follow up on these results. The doctor looked her over today- she has zero outward symptoms and there are many false positives for this test. She’s confident that it’s nothing but if it is, it’s treatable.
So we had two attempts at a blood draw today which was worse than her nighttime waking and crying. :/ but they got what they needed. So now we wait. And hope that some of the things we have done will help her be more comfortable.

I haven’t updated much on Eli lately. Ruby has stolen the spot light! So what’s new with our sweet man?
He’s eating amazingly. We cut out a lot of his liquids and eating is much less stressful. Apple cider vinegar and Prevacid have eliminated his spitting up! It’s gone! He’s also beginning to get his pincher gasp down which means he’s trying to pick up and eat smaller table foods. Our newest treat: cheese-itz. Our OT has been working with picking up smaller objects and drawing. I would say our fine motor is coming along wonderfully but slow. Which is why it’s so awesome that he’s picking up such small stuff now!
Just today, he pulled the rubber stopper off the door jam. He’s done it a million times and always drops it afterward. But today he put it in his mouth. Lol of course he wasn’t unattended but this was huge! He’s never been able to get something that small to his mouth before. It was celebrated 🙂
Gross motor is coming along awesomely. Our PT keeps trying to fix Eli’s crawl (he’s got swagger, kid crawls with his right leg up and out- the 3 point crawl) but he just won’t fix it. He’s pulling to stand on everything and is getting more brave every day. He has started to take supported steps on his own which is exciting!
His spirit and determination are amazing. Our PT means business so for now we just keep working on it.
Speech has been one of our more successful areas lately. She does so much singing and signing with him. At first I thought it was a bit redundant-
she’s doing what we already do at home. But she’s not really. Her positive and uplifting attitude are unmatched. She turns every moment into a learning opportunity and it shows in Eli. He’s signing so much more now, his comprehension is through the roof, and he’s been picking up things so quickly- his newest word is “bubbles”. I wanted to cry it was so amazing to hear.
She’s amazing and supportive from every angle, just like Eli’s whole therapy team. I feel blessed to have them…which is why I’m so sad that our program is being pulled and transferred to a new program. :/ I’m anxious about who we will get and how good they will be but we just have to trust this new plan. The old program was disorganized and unpredictable. Hopefully our new therapists will be part of our team and family like what we have now.

Anyway, Eli seems so big to me now. He’s growing and learning so much- despite all the new changes around the house.
He was my tiny baby man just three weeks ago, but now I hold him in my arms and he’s so big! He’s not a baby at all. He’s growing and it scares me. I rocked him to sleep last night- the heaviness of his body against mine was heaven. His sweet breath, his long blonde lashes, his messy hair…all so perfect. I wish I could freeze time.

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Ok, updates are done and I got some blogging to do!! 🙂
I feel like we are at a crossroads.
I remember when I was searching for blogs about families who have children with DS. Most of these families already had more than one child so their blog wasn’t strictly about DS. On one hand if was nice because the ease of how their child fit into this world was a comfort to me. How “normal” they seemed. But it was also a turn off because I wanted to learn as much as I could about how to make Eli successful. I didn’t want to read about how wonderful their lives were now. I wanted the rough and real of what our new life would be like from the beginning. A how-to guide on therapy and bringing up a baby with DS.
Looking back, some of it was rough and some was easier than I thought.
Like, I was afraid of how much time therapy would take up in our lives…but it’s just a part of it now. Or how much harder Eli would have to work to reach milestones…but when he reaches them we are that much more proud. Or I was upset about being labeled “special needs”…but now it just is what it is. Eli is more than a label and our family is so normal it’s kinda creepy.

In those early dark moments I would reach out to other moms who would tell me how amazing Eli already was, how much I would love him, how DS would become our new normal…I swore they were lying just to make me feel better!! That he’s my son so I have to feel that way. But it’s not true at all. All children have something. Kids are hard (thanks for proving that point Ruby…we hear you loud and clear…). But my children are worth it.

Now that Ruby is here, maybe this will become one of those blogs that were hard for me to swallow before. DS is just one part of it now.
However it turns out, I want people to see Eli and love him as much as we all do. I want someone to find this blog and find hope and peace about the fate of their child and family. I want others to see just how average we are. Breed love, acceptance and hope.

Ok. I think I’ve rambled enough. I still feel jumbled and all over the place, but I needed to write it. I plan to add some videos and pictures soon but right now- sleep. 🙂 because this mama needs it! Thanks for reading!!

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4 Replies to “Updates and Becoming “That Blog””

  1. Sounds like Ms Ruby is having a hard time. I don’t know if this will help, but both of my kids were the same way. They both ended up having milk and soy protein intolerance. They were grunty and fussy (understatement!) and didn’t sleep well at all. Our GI dr explained that a high percentage of kids who can’t tolerate dairy protein also have trouble with soy, which is usually our first resort! I was breastfeeding them so I took those things out of my diet, but the dr also recommended formula that had those proteins broken down to make them easier to digest.With my daughter I tried to supplement with Alimentum, but she didn’t tolerate it very well. My son seems to have tolerated Elecare much better. As it turns out, he doesn’t do well with gluten either. I don’t know if Ruby has the same trouble they did, but her symptoms sound similar. Once we changed they’re diets we saw changes within about a week, but it took 2-3 weeks to see full results. Then around 5-6 months I was able to start reintroducing those foods and my daughter had no trouble with that (we’re not there yet with my son… so close!) I hope that helps! Both babies became whole new, much happier people once we made those diet changes!
    Side note: If you try the EleCare formula, you may have to ask your pharmacy to special order it. Where we live it’s not just sitting on the store shelves.

    1. Thank you so much. This was actually a similar issue with my son so I remember about the milk and soy both causing issues. We were going to look into the second formula you mentioned but our pedi wanted us to wait a week and see how these changes helped first before doing any more changes. *sigh* so we will see. It’s been pretty awful around here. :/

      1. Hang in there! I know how miserable it can be. But once you find the right food it will all be worth it! I’m sure a week never sounded so long! But I’m sure you’ll find something that works for her and then you’ll be hard-pressed to remember her early unhappy days. At least I hope that’s your experience. It’s been ours with both kids!

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