Thirteen months? Really? Where did the time go?
Our beautiful boy is now sitting up on his own with no help from his mama’s leg. We still use the boppy as a spotter since when Ryan decides he is done sitting he simply throws his body backwards. Egads! Not good for the noggin.
He went from sitting by himself for a few seconds last week, to sitting for a few minutes. It’s the cutest sight to walk down the steps and see the back of his little head while he sits and plays with his toys.
His heart continues to hold steady. He is scheduled to go back in for a heart catheterization on April 16 to make sure his Glenn circuitry is working properly and to see if there is some PA shrinkage causing him to still need the oxygen. I have the go ahead to play around with his oxygen rate starting mid-week after we are sure he is stable following a med change last Friday, but I already know he needs some oxygen. I am hoping he will tolerate moving down to one liter per minute over the next four weeks and let the medical team follow him under that rate once he is in-house. It’s incredibly difficult to know what’s going on for real inside that little body of his without an A-line.
Ryan is working to come down on his diuretics which would in turn allow him to come off his sodium chloride (an electrolyte replacement). That would be awesome! He gained a med for reflux so he is up to 9 meds, but they are so much more manageable than the 13 he came home home on.
Isn’t this the cutest little hand you’ve ever seen? I love when kids have the fat roll at the wrist that looks like they are wearing a rubberband. And how about that chuncky thigh? I’m so lucky to have this boy in my house every day!
Ryan is saying two words now and working on tons of other sounds. He says ‘hi’ and ‘no’. He apparently told the speech therapist ‘no’ on Friday when she tried to feed him. He is cutting four molars and he did not want anything in his mouth. We are taking a break this week to see if they’ll come through the gums a little more before pushing him to continue. He also puts his little arms in the air when I ask him if he wants ‘up’. I’m counting that as a third word. And I know he understands the word ‘down’ because we play a push-up game on his tummy wedge where I say up, up, up and and he pushes up on his arms. Then I say down, down, down and he puts his head down to rest on his little hands. He didn’t go down the first few times we played so I would push his head and arms gently down. Now he does it on command. This is progress, people.
As far as doctor visits, last week we saw the neurosurgeon for a follow up and Ryan’s ventricles haven’t grown any. This is good news as it supports the original diagnosis of hydrocephalus ex vacuo. We see the neurosurgeon again in three months for a clinical eval and will only schedule a CT scan he sees any symptoms of change.
We visited the GI doctor on Thursday. Ryan has some major reflux and we’re also wondering if his GI tract is normal. We spoke about possibly getting some tests run when Ryan is in for his cath.
The cardiologist saw Ryan on Thursday as well and said he is looking great. We don’t have to come see her until our scheduled admission which is only four weeks away.
We still have a long way to go, but Ryan is learning new things every day and I can see his body gaining strength the more he is up off his back. The girls have so much fun running circles around him and patting him on his head. I get a kick out of seeing Henry giving Ryan a ball to hold or hearing him chatting with his son. It’s hard not to relish in these moments when we went without them for so long.
(c) 2016 Leighann Marquiss
Comments (11)
The pictures are so sweet…glad he is doing so well! He is absolutely adorable! Keep up the awesome work!
What an adorable little Chunky Monkey! He looks so happy and so good! He is obviously thriving at home! Love & Hugs!
all good news
It’s so good to hear he’s well and getting so big! Have a great week…he’s just so cute:)
Ryan’s adorableness is off the charts!
I wonder why those chunky thighs look so adorably sweet on babies but not on grownups? I wish they looked better on me!!
Way to go Ryan! How neat to see answered prayers as he grows more every day! Praise God!
he is such a trooper. I was thinking about you and realizing that it has been a year since both our boys were in the hospital. Wow… what a year.
I love his chubby wrists too… I wish I could be there to kiss him!
Great pictures, wonderful he is making progress! Such a cutie. Will continue to pray for him.
Melissa H.
Wonderful that Ryan is becoming stronger each day. He is just so cute, I just want hug him and pinch those chubby cheeks. He probably would not like that but he is irresistable.
Adorable, the rolls are the best! I would squeeze them all day.
I love, love that he said NO! That is funny!
It is wonderful that he is making progress, little by little!
Hi there. Found your blog through Karsie Gene’s blog. We were in the hospital the same time Karsie Gene was. Our son has HLHS. He has had his Norwood Surgery and he will soon go through the Glenn (May 21st). I love your blog….what an inspiration! Thanks for sharing your story with the world!