In His Hands: Keeping Busy

June 19 - Beau is putting more and more pressure on his arms.

It is one focus of his physical therapy along with trunk control/balance in order to be able to sit up someday!

June 20 - We took Beau to the pool for the first time today! He did so well in the water which I expected since he does well in the bath. He got to lounge in his floaty and I caught him trying to lick the water a few times! Daddy and Auntie J came to the pool with us - though daddy stayed behind the camera.

June 21 - We had a First Day of Summer BBQ at our church this afternoon.

Then we had dinner at the Hershberger's house and the boys got to play!

Beau also celebrated a milestone today - he rolled over from his back to his belly two times! Though I didn't see it happen, I know it did because I left him on his back and returned minutes later to find him on his belly! He'd been rolling to both of his sides so I knew it was just a matter of time! Now I can anxiously watch to see it happen in front of my own eyes!!

June 22 - Andrew has been faithfully watching the World Cup and since the US played today,

Beau needed to sport a lil bit of pride!

June 23 - After two weeks of carrots we made the switch to apples! Beau seems to like them a little better and he is getting more used to the spoon. We have been playing with it as a toy on the carpet too and that has seemed to help him "warm" to it! We are in kind of a dilemma with feeding because he has a major aversion to the bottle/milk.... and it triggers retching and sometimes a vomiting episode that we'd rather avoid. After talking to the pediatric surgeon last week when we switched out his gtube, he said some kids will just skip the bottle stage and go to solid foods and sippy cups... hmmmmm... that might be an idea I like!

June 24 - Oh I can't get enough of these smiles! He is now smiling back to us smiling at him! It has taken a while where he would smile when we played with him. Now, I can just give him a big smile and he gives one in return! SO FUN! It's the little things right?

June 25

June 26 - We went to the urology doctor today. We had to get a consult for Beau's next surgery to correct his hypospadius and get him circumcised. I'm not going to go into major detail here (feel free to google it!) but because it is an elective surgery, the doctor wants him off oxygen before the procedure as he'll need to be under anesthesia and on a ventilator. We have tentatively planned the procedure for the end of September or early October. Right now Beau is at a 1/4L of o2. He is still dropping below 93% oxygen saturation maybe once a night (with a quick self recovery) so we're letting him hold steady there for a few more days. We figured it best to wean him slow and steady rather then fast and have to go back up on it. We know he is fine without it when he's awake but it's a pain taking the tubing on and off so we just keep it on all the time.

These photos are fuzzy but he kicks, flaps, and flails his arms and legs like crazy..... it's soooo funny!!

June 27 - We headed back to the doctor today for Beau's infant toddler development appointment. We met with a developmental pediatrician and the occupational therapist who Beau works with every time he is inpatient at the hospital. They tested his abilities in 4 different areas. He scored around the 4 month mark in the areas of communication, fine motor, and problem-solving and 3 months for his gross motor skills. It was awesome to get a baseline of where he is developmentally. Though we know he is very behind, it is nothing we didn't expect to hear.... we have to remember that he has spent over 5 months laying in a hospital bed and has low muscle tone (grossly hypotonic as the docs say) due to his Down syndrome. It is going to be a lifelong journey of meeting milestones at a different pace as typical children so we need to embrace his capabilities and celebrate his accomplishments as he meets them! I recently saw another mom's blog that posted her daughter's milestones and I might do the same so we're continually looking at the positive! I read a quote today that was perfect too: "Parents who have children with special needs are always thankful for progress not perfection." Since Beau turned 8 months he has just taken off with his skills; it bring us so much JOY and we're thankful for progress! GO BEAU!

June 28

June 29 - Happy babe after bathtime! This is one of his newest faces :)

June 30 - We did a trial run today with no o2 while he was awake and his stats stayed stable!! On the downside, he would fall asleep and within minutes his oxygen saturation would drop below the recommended 93%. So we would just slip the o2 back on his face for his nap. We keep the dots on his face though because it's a major pain taking them on and off everyday. So I guess this might give a little light into the theory of Beau having sleep apnea. I plan to consult with his pulmonologist to see what further investigation needs to be done! But I'll say it's simply wonderful having him cord-free during his awake hours, when he's not feeding of course!

Our PT recommended Beau get a SuperSeat because his thighs are getting a bit too chunky for his Bumbo! Well he doesn't quite love it yet but this photo was tooo funny not to share - he got stuck on the giraffe!!