Gideon Update 4/29

I don’t have much to update but people have been asking and I had some cute pictures to share so, why not? I do have a prayer request for Gideon. He has his swallow study at Seattle Childrens this coming Friday morning, please pray that his suck/swallow/breathe pattern is good and strong and everything goes where it’s supposed to. The doctors aren’t sure if he has pretty bad reflux or if he is aspirating fluid into his lungs so I’m praying it’s not aspiration and that is just reflux that can be treated. His rattling sounds have decreased significantly over the past 2 months which is good. He is exclusively breastfed and we hope to keep it that way so we need the swallow study to go well this week!

Speaking of appointments this week, I could use some prayer for that. I looked at the calendar the other night and broke into tears. There is a lot on it. We have weekly therapy for Gideon which is in home so that’s awesome but also stressful trying to manage basically 3 toddlers while focusing on the infant with brothers around to work with the therapist. I’m so thankful she comes to the house but even still, it’s a bit stressful because the other 3 are only 6, 4 & 3, not exactly self sufficient and don’t really have the attention span where I could even stick them in front of the tv for an hour so I can focus on working with their brother. We have the swallow study, fitting for a special garment the therapist is ordering for him (a SPIO suit: stabilizing pressure input orthosis) that will hopefully help with his core strength and head control, I have my own doctor appointment to establish care with a new doctor and I’ve begged them to do a physical at the same time so I don’t have to go back for another appointment though I know they don’t usually do a physical at an establish care visit – (pray for that too please!) , he sees the cardiologist and the pediatrician, he is seeing urology as well as ENT & again with another 3 hour (or was it 4?) Audiology appointment… it’s just a lot. Other than medical appointments, all we do is go to church on Sunday and Co-Op on Wednesday and the kids often visit my parents as well so when I looked at the month, I just cried. I used to be so organized, planned, ahead of the game, I could look at the calendar and know exactly what I needed and have it prepped and ready in advance for everyday a month out. Now I look at the calendar, crumble into the fetal position and cry unable to even make it to bed the night I look at it, much less consider what I need to have prepped for the next morning. Ha. It’s really not that bad, it just looks scary and overwhelming and I need to work out child care days and figure out which appointments Bo will be at me with or who will be with the big kids where at or if we all go, etc. Anyways, I’m being dramatic so I could use some prayer for that please to ease my mind.

This is a new favorite picture of mine. Uneven cut fingernails with dirt under them wrapped around my finger. Love.

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17

He has recently been able to get his left hand to his mouth which is exciting for a variety of reasons. Hopefully soon, he will get his right hand to his mouth as well but that doesn’t even seem to be on the radar just yet for him. He gnaws voraciously on whatever he can shove in his mouth, knuckles, his thumb, this afternoon it was his first 2 fingers which was just adorable because this is how we used to see Elijah as a baby all the time, with his first 2 fingers in his mouth. So cute!

He still makes the BEST frown face ever. That little lip……Oh my.

His therapist brought us the water tummy time mat I wanted to buy for us to use here. He seems interested in it but not enough to not scream and cry while he manages to hold his head up for 5-10 seconds to look before slamming face first right onto the mat  to just sob. Ha. Maybe we’ll make it to 15-30 seconds this week?? We could use prayer for that as well!!

He does pretty good looking up when he is more upright and likes to listen to me talk right into his face. I was pretty reclined on the couch holding him like this (I’m so lucky that snuggling him this way is actually one of our therapy exercises for him!) and he held his head up well for a bit, that was exciting.

He likes to wake brothers from their naps when it’s time for them to get up and party again. Neither of them actually got out of bed the other day when he came in to wake them though! Lol.

Love one another with brotherly affection. Romans 12:10a

Another day, ,another horrific tummy time experience. This was in his first 3 seconds before the screaming & crying started. Come on little man, you can do it!!!!!

95% of the time when it’s time to get up and eat, this is how I find him. OUT COLD. I had even taken him out of his bed here already and he was still asleep. Little nugget, I should probably check to see our babywise book to see if it’s time to adjust his sleep schedule since  he almost never wakes up on his own when it’s time to eat. He certainly is ready to nap after being awake for 1.5 hours though.

Oh the irony. I’m the anti screen time, anti tv, anti video game, anti ipad mom who does my best to minimize electronics for the kids (except for the shape up exercise game on crummy weather days) and the therapist found the ONE thing that seems to really motivate Gideon to look up and hold his head up. He is enjoying learning the praise baby songs but prefers the actual cartoon characters better from baby einstein. I need to find and save a couple of videos that we can use during therapy that keep his attention and we will see how long we can get him to hold his head up. The therapist and I laughed pretty hard when she told me to get my Iphone out and find a cartoon for him and as soon as I did, he popped his head right up to watch it and tracked it very well. She knows I’m anti electronics so it’s funny that it’s what we will use to help Gideon out right now.

Another one of those times when he should be eating. Lol.

He certainly loves bath time. No matter how upset he is, if I put him in the bath, he instantly calms down and is very mellow.

Here’s that cute little beanie baby I took his picture next to a couple of months ago. He is quite a bit bigger than he was last time I took this picture! He weighed in at 8 lb 8 oz at the cardiologist last time we were there. He is still fitting into some of his newborn clothes but I did notice some fluff growing on his legs. He had bony little chicken legs when he was born so to see some fat around the knees was pretty exciting. And seeing the difference in this picture versus the last time I took it was pretty crazy too.

Here was the original one of him next to the bear from 2 months ago. Not a great comparison because of different angles but  you can at least see how much smaller the bear appears next to him in the one above versus the one below. 

Time to get him up for his last feeding for the night. THANK YOU for continuing to pray for us! I’m so thankful we have such an amazing prayer group holding us up in prayer and petitioning for our specific requests. You all are such a blessing to us, a prayer may not seem like you’re helping out a lot but  it’s the biggest help for us! God is bigger than my calendar, than any diagnosis, than any hurdle we will face so we continue to seek Him first and not lose our focus to the best of our ability and trust in His promises because He is good. All the time.

P.S. I’m not going to edit the post, I’m just going to laugh at the the very first sentence that reads “I don’t have much to update” as I just clicked the ‘preview’ button then had to SCROLL forever to get to the bottom of the post. I really don’t have a lot of new information to share but I do love a good run on sentence and verbal vomit. It makes me feel better to write and get stuff out, hopefully those of you who read this far really wanted to and are entertained by my antics. At least I make myself laugh :)