Friday, May 6, 2016

Finn + Bump Update

It's been a long time since I've updated on Finn so I think we're due. He just turned 4 and I honestly can't believe I have a 4 year old. These last 4 years have gone by quickly yet I look back at his first year of life and it feels like a lifetime ago. I've been dwelling on that first year a lot lately, maybe because we're about to welcome a new baby into the world or maybe because of his birthday, who knows. That first year was hard, really hard. Doctor and specialist visits a few times a week, endless crying (on both our ends), and constant fear and questioning. It seems like once we hit that year mark things started to smooth out and we caught our breath, thank goodness. The crying spells stopped, after countless amounts of tests we didn't find anything out so the testing stopped, and we stopped doubting and living in fear. We decided to let Finn be Finn and just love the heck out of him, and that made all the difference in the world.

At the beginning of this year it seems like the fear started to settle in again. We have been worrying a lot about his weight after a few doctors mentioned he's extremely underweight and there has been a lot of talk of a feeding tube (G tube). The tube would be surgically placed in his belly and he would get liquid supplements a few times a day along with eating orally. We have been going back and forth wondering if this is the right thing for Finn and us. Many parents say it's really not a big deal and it's actually a huge lifesaver but for whatever reason we just haven't felt good about it for Finn and for us. We got so scared we upped his daily calorie intake, pumping him full of high caloric foods. Finn got so sick. He stopped eating and refused anything we gave him. He seemed miserable all the time and started having meltdowns (flashbacks to his first year of life, eek!) He had always been such an incredible eater up until now so this really scared us. Hence, more fear.

After weeks and weeks of this battle I'd had enough. One night at 2 am as I was putting Finn down to bed (ya, still a wacky sleep schedule at this point) I broke down. I had a long, tearful chat with Finn and with God about how we were done. We were done living in fear, it's just not us and it's not what God wants for us. I felt like I wasn't me, I was never fearful when it came to Finn and his "condition", I've always been so accepting of everything. I wanted to feel like myself again and I wanted my good eater, happy boy Finn back. The next morning I felt so much better. I fed him a normal breakfast, free of 500 calories of dairy and peanut butter, and within the next few days things started to get back to normal. I felt like a could breathe again and I got my happy boy back. Sigh of relief.

Finn's weight is still something we are aware of we are just focusing on it in a different way. After visiting multiple nutritionists and dieticians we came to the conclusion with their help that Finn is very much ok. A feeding tube is not necessary at this point and we just need to be thoughtful of the things we put into his body to help him get all the nutrition he needs. Another sigh of relief.

This whole ordeal taught me a lot. First and foremost I need to trust my instincts. Noah and I know what's best for Finn because we are with him everyday. God has instilled in us a special radar so we know what Finn needs and doesn't need (most of the time). And because he's non-verbal this really comes in handy and we NEED TO USE IT. Doctors are wonderful and we have some pretty incredible ones in our corner that we're so grateful for, but we have to use our discernment along with their advice.

Once that was all over we decided to tackle the sleep issue. He hasn't slept well in over three years so I bought a book titled "Sleep and Your Special Needs Child." One thing they stress a lot in the book is routine. So we started enforcing a strict bedtime routine for Finn and let me tell you, he's been sleeping like a dream, knock on wood, please please please don't jinx it. This has been going on for over 2 weeks now so we're crossing our fingers it sticks.  It's been an answer to our prayers, especially with a new baby coming in 2 months. We need our sleeeeeep!

So other than all that Finn has been doing great. We've kicked therapy into overdrive and started taking him to Shriner's Hospital and we have an incredible therapist there who has been teaching us so many wonderful things to help Finn with his strength. He's standing so great, with our help of course and he's loving all his equipment. We also have been taking him to a holistic doctor and they have given us some natural supplements to clean out his gut and keep his brain healthy. He has been a new kid! He's so aware of his surroundings, looking around and taking everything in. He's babbling nonstop and saying new words and sounds like dada. He smiles at us now and is just overall a happy guy. Not everyday is perfect but he has so many more good days than bad at this point.

Also school is going so great. I was so so so scared and almost didn't put him in preschool. But now I'm thinking it's the best thing ever. He goes twice a week for a couple of hours, he gets all his therapies there and they keep him super active. It's a mixed class with special needs kids and regular kids and it brings tears to my eyes when I see the other kids interact with Finn. They just love him and accept him for exactly who he is. And his teachers and therapists are so wonderful with him. It's been such an amazing experience.

We haven't done much more testing at this point. We thought about doing some genetic testing last year but decided to hold off since insurance wouldn't cover it. Finn's auntie Ruth raised some money for him last year when she ran the Boston Marathon and we were thinking of using that money to do the testing but decided against it since we could use it for much more important things like equipment, a wheelchair and specialists that aren't covered under insurance. Also a huge thank you to everyone who donated last year, we are truly grateful.

This is already a very long post but I figure it doesn't happen often and I should get it all down now. If you're still reading you're seriously a trooper, hats off to you!

So, baby number two. Yes it finally happened and unplanned too by the way. But now that it's happened I'm really happy about it, it's just time you know? I've been so much more in tune with this baby and pregnancy for some reason. Maybe because he's the second so I kind of know what I'm getting myself into and I can relax a little more. But I've just really felt a connection with him and I've been thinking a lot about how I want to bring him into the world. I'm really excited to give birth to him and see him for the first time.

I hate to say this but I feel like we were somewhat robbed of the new baby experience with Finn. We had a lot of issues from the get go and I really struggled with baby blues and coming off of the epidural and pain meds. We're shooting for no meds or interventions this time around (for my sanity) and hopefully it pans out. We loved Finn obviously but he was our first child and he had special needs unbeknownst to us at the time. It was just a real struggle and took a while to bond with him. Now we can't get enough of him and feel like we might eat him at times, he's just so darn sweet and amazing.

The thought of having another child with special needs like Finn has come up. Because Finn doesn't have a diagnosis we don't really know if his condition is genetic. But if it is we have a 1 in 4 chance of having another like him. To be honest we don't dwell on it a lot. Whatever happens will happen and I really feel at peace with it. From the beginning of my pregnancy I was never really worried about it so that must be a good sign right?

It's probably about time I wrap this up, hopefully I'm better at updating especially once the baby comes. Mostly for my sake, to have these experiences and thoughts in a place where I can go back to read and dwell on them. My pregnancy hormones have made me very contemplative and deep. It's funny actually, and so unlike me. But we'll roll with it.


  1. Hey, beautiful post! I can tell you are a wonderful, caring mother. Finn is adorable btw! And Congrats on baby #2! Way to go on trusting your motherly instincts and faith. You guys are the experts when it comes to your son, and you'll know what's best. I have a 6 year old that has a chromosomal deletion- he is non verbal, still doesn't walk quite yet, has a feeding tube and takes nothing by mouth, and goes to a special needs kindergarten. I have 2 other children, so I totally get the not having the 'normal' baby experience the first time around, etc. I also blog about our experiences. If you're ever interested, I also have a bunch of resources. Good luck and take care!! Heather Thorup

  2. Happy belated birthday to Finn! I started reading your blog before Finn was even born and I can't believe he is already four! He's grown up so much. :) And congrats on baby #2!

  3. Congrats! I love seeing how great Finn is doing! I love that you are having s second babe! I just saw that he was born early and he looks amazing!!

  4. enjoyed reading this post, Im glad Finn is doing good, he is so cute. You are an amazing mom, keep doing what your doing, Finn and your new baby boy are so lucky to have you as theirs