Our Current Situation

Summertime is sometimes tricky. Weston is out of school. We usually have several different vacations...weekends at the lake, a trip to Orlando to visit family, a beach trip. Bedtimes are later than normal because the sun stays up a little longer. It's hard to get into a routine. Just when I feel like we're getting settled, we leave again for another trip. Don't get me wrong, it's fun, but it can also be a little bit more tiring and stressful (packing for 2 kids is NO JOKE....clothes, bottles, formula/rice cereal/Thick-It, toys, pack-n-plays, bibs...the list goes on...and on...).

But, one thing I can count on each week is that Colton will have 2 Physical Therapy sessions. He now goes twice a week for 60 minutes each session. I take him to those sessions and I watch. I watch and learn. I also help. If Colton is fussy, I sing him songs. I offer him toys. I pick him up and hug him if he needs a Mama fix. Some sessions, he does AWESOME! Other sessions, he cries a lot. The other day he was crying and I picked him up and said, "Colton, Mama is so sorry! Most babies don't have to work this hard. It's just not fair!" It made me tear up a little bit. I hate that he has to work hard just to do things that other babies do naturally. It stinks, but it is what it is. We have no choice in the matter, so onward we go! All I can do is to keep taking him, helping him, and encouraging him.

Babies with DS are usually very low tone and very flexible. I've seen pictures of babies/kids with DS that can contort their body in the strangest ways. The funny thing about Colton, though, is that he's not very flexible. His PT also told me that he has more tone than most. We're not sure why, but that's the way God made him. She said it's a good thing. His hips are really tight. So this week, she wants me to work hard to stretch them. He cries when we're doing it, but he needs to loosen up a little bit.





We are also working on sitting. We have to strengthen his core. I put him in his Bumbo seat a lot in order to help.



Colton has a hard time with his arms. It's really hard to strengthen his arms. It's not like he can just lift weights. We do a lot of weight bearing through his arms while he does tummy time.



It would be nice if he would do push-ups, but that's no easy task for a 5 month old. Colton can't control his arms like a 5 month old should. Our PT told us that we need to try to get him to reach out and grab toys off of a surface, while he's sitting up. Colton will look at a toy in front of him, start sticking out his tongue because he just wants to taste it, but he can't quite figure out how to make his arms get the toy. If I put the toy closer to his hand, he can grab it, but for some reason, reaching forward is hard for him. If he's lying on his back, he can reach up and grab a toy, but if he's trying to support his head and body and control his arms, it's really hard for him. We made him a little desk to practice while he's sitting.



We are also working on prop sitting, which requires him to use his arms to support his body. He will prop for a few seconds and arch back to get out of it. We think that when he bends over, he's putting pressure on his tummy, which doesn't feel good since he has a little Reflux. He spits up more when we're prop sitting. So...I think we might mention that to the Pediatrician at his next visit to see if we can't get him some medicine to help. He's not a fan of prop sitting now, so I tried it on the exercise ball last night and he liked it. Whatever it takes!



So...we're trying to learn to sit, grab toys, and strengthen our core and arms. He's doing really well. He's such a sweet and happy baby. I told his PT that he really only cries when he's tired, hungry, or working out with her! She laughed.



We love you baby Colton! We are proud of you! Keep working hard, buddy. We'll get there.