Ryan is doing really well. The H word has come up every week for the last three weeks – he is on the cusp of being ready, he just needs to get over a few hurdles. The biggest is his diuretic dose. Today was the last day he received an IV dose; tomorrow all four doses will be by mouth. Yeah! If he tolerates the change, he could be home by the end of the week.
That being said, I am still waiting until they put him in my car before jumping up and down for joy.
Meanwhile, he is making leaps and bounds in other areas. He is roughly 19 pounds 6 ounces and today I noticed a fifth tooth… coming in at almost the same pace as the tooth I noticed last week, both on top. His little gums are inflamed on the bottom too, but I’m waiting to see if that is just a fluke. It seems like now that his surgeries are over, his teeth are popping out at an alarming rate.
He is finally figuring out his hands are for more than sucking and gawking at. They were tied down for so long (to inhibit him from pulling at his breathing tube) I think he just stopped trying to reach for things much like a dog who is zapped over and over by an electric fence finally stops trying to leave the yard regardless of if the fence is actually on. He reaches for his toys and is grabbing at his lead lines, his blankets, and his heart. I asked the nurses to keep clothes on him so he doesn’t scratch himself up so much. It seems like I am cutting his nails every week and still can’t keep up (the nurses are not allowed to cut fingernails since most kids in the cardiac units are on heparin, a blood thinner, so parents must remember to bring in nail clippers each time).
He’s been kicking and flailing his legs for quite some time. I think he started using them in lieu of his hands when he was in arm restraints. He kicks his leg when he sees people come in the room and kicks in response to being cooed at. However, today I saw him lifting his leg and staring at his foot. He did it over and over… He was lying on his back and lifting his leg 90 degrees into the air and just staring at his white sock-covered foot. I think he realized he has control over it. We played a game where I put my hand over his leg and told him to kick my hand. He did it several times. Yeah!
I tried to get a picture of him staring at his foot but was unsuccessful. This brings up another cognitive leap for my boy. He sees my camera and stops performing, sometimes mid-movement or smile. It’s like he knows I’m trying to capture him on film and is trying to be a booger. It took me forever to get him to smile at the camera today but as soon as I put it away he was all smiles.
The speech therapist came by right before I left and I was able to watch as she worked with Ryan to practice swallowing. He has no problem accepting food into his mouth – it’s getting him to swallow it that is the problem. He is so used to not being able to swallow because of a tube down his throat and having all secretions suctioned out instead. What ends up happening is he lets the food sit in his mouth near his front gum line instead of pushing it to the back. Eventually, we either have to remove it or it comes out like drool. Today, he did a great job of swallowing it – although delayed – instead of letting it sit. He worked to push it to the back of his mouth consistently over the course of the session and opened his mouth appropriately when the sponge was headed his way. He even bit down on it showing he knows what to do with his teeth as well.
Last but not least, he mimicked Dr. K today. Ryan has been waving a little (the nurses say so at least, I wasn’t so sure they were right) and I have seen him scrunch his fingers mimicking one of his favorite techs. However today I am sure he was mimicking on purpose. Dr. K is on service this week and was in Ryan’s room giving me an update (oh how I love Dr. K!!). He raised his hand as most people do when talking and Ryan raised his hand. Dr. K held up four fingers because he was talking about Ryan’s four lasix (diuretic) doses. Ryan turned his hand so his four fingers were in a predominant position. It was very cute. He loves Dr. K too and totally recognizes the guy who has saved his life on more than one occasion.
Hopefully the next time we talk about Ryan it will be in terms of him coming home. Until then…
(c) 2016 Leighann Marquiss
Comments (23)
Oh, Leighann! That’s so exciting! The pictures of Ryan has me smiling, he looks so precious that I just want to hug him! :o) I loved all the pictures but esp loved the one where you talked about being forever to get him to smile and when the camera is away he’s all smiles! 🙂 It’s exciting to see him go through the milestones of discovering how his hands/feet work and I’m glad he was able to swallow today, I’m sure it takes time and is hard but one day at a time & God is in control. Thanks for the update and continuing to pray for him and your family! 🙂 <3
oh, i can’t get enough of the pictures. i love seeing ryan!! and congrats on all his improvements and accomplishments. i have this strange feeling that once he starts swallowing, he is really going to like it =-)much love!!
So much eye candy in that post!!! I love it. He is so handsome. Don’t think you have had a post with soooo much good news in it. So excited about all the milestones. Can’t wait to hear that he is home. Love you and praying for you daily.
What a sweet little prince. Love reading about his milestones and that blessed word ‘home’.
In prayers for you.
What a great update!! I love the pictures, I love how much Ryan is improving (What a sweetie!) and am praying he is able to go home soon!
MH
Awesome!! I agree with above comments – love the pics!! Mia, my 2 1/2 yr old, loves seeing pics of Ryan too 🙂
I loved your blog today. It’s so thrilling to think I may actually be able to hold my grandson soon…mom
I loved seeing the pictures and hearing all the news about Ryan. Still praying for him and all of you….I’m sure you can’t wait for him to actually be home. Thanks for the update!
Love and Prayers,
Tyra
Loved all the new pictures!! Hope he does come home soon. I loved the message from your Mom….how wonderful that your whole family will be able to hold Ryan soon. I remember how nice it was when my oldest daughter got to hold my youngest daughter after she spent 2 months in the NICU. My favorite picture of all time was taken then!!
I meant to comment on an earlier blog post about you meeting a blog friend. Through this long and difficult journey you are having with Ryan, it sounds like you have met alot of fabulous people along the way. Maybe one tiny good thing that has come out of this very difficult situation!
~Wendy
Ryan looks so good in these pictures! He is definately his mommy and grandma:) I really don’t see Henry at all, maybe it will come later:) It was so good to catch up with you, loved the girls, so cute. Praying for you daily. Love you, Amanda L.
Won’t be long now and you’ll all be together, at home, as a family! Then you’ll have time to make up for everything he’s missed out on.
Blessings…
This is exciting news. Ryan looks wonderful. God is good.
Oh, I’m so happy!! I hope and pray that he gets to come home!! He is getting so big and he is so cute!! Always in my prayers! ♥ Lori
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WOW!! Such wonderful news! I’m so excited for you and baby Ryan that he will be able to live at home soon.
We’re cont to pray for him and the family.
Paula
Yay!!!! Such a wonderful post full of good things. I am so excited that Ryan is doing so good and may be going home soon.
I love this little guy. My husband and I pray for him all of the time. I think he has a place in each of our hearts. And all of us bloggers look forward to the day when he gets to go home with you and Henry and the girls.
He is so precious. He certainly is getting a lot of teeth all at once it seems. I love seeing him smile. It is good to see him sitting up in a highchair too.
Thanks for sharing all of the good news today Leighann.
Continued Blessings!
Linda @ Truthful Tidbits
Thank you for sharing this wonderful update. Mr. Ryan will catch up very soon. He has such a beautiful smile. Wow lots of teeth all at once. Sailor has yet to get even a hint of a tooth, thats ok for now, but if she wants to eat ribs with daddy she needs to start popping come chompers.
Praying daily for Ryan and the whole family.
He is just beautiful.
the last two photos are my all-time favorites of Ryan. He gets stinkin’ cuter every time I stop by.
So glad things seem to be headed in the right direction. I’ll keep my fingers crossed and the prayers headed up.
Blessings,
Karin
That is awesome at his progress!! Praying that you will get to jump for joy as he is getting loaded into your car. :)His smile is sooooo precious!
T.H.R.I.V.I.N.G! Leighann, he is truly thriving, his little brain seems to be growing and developing in leaps and bounds along with his growth patterns, and he is THRIVING!
I love my fix of eye candy. Does Ryan have special eye lash growth in those IV’s? Seriously, that little man has GORGEOUS lashes! And his smile brings me back…along with your fabulous writing style.
*fka anonymous
Great pictures! Everything sounds great! Leading in the right direction! I’ll continue to keep you all in my prayers.
Hi! Just found your blog today. And just fell in love with your little Ryan what an angel. I am sending my prayers that you will be able to have him home soon.