Back in December I posted my goals for the next 6 months with my kids. And as crazy as time flies it’s already been 5 months! I head back to the states for a visit in a little under month so I’ve been evaluating where each of the kids are so I can figure out where to go next and try to get some things in place for while I’m gone. Sometimes it feels like my kids aren’t making any progress but looking back at where they were and where they are now I can see that they are all moving in the right direction! I decided to break them up into 2 blog posts so I can really record where they are and get a good snapshot of what they are doing. Mainly for my own records but I figured I would share for all their fans out there.
Penny (Old Goals)
- Basic Communication. Simple signs or choosing between 2 choices on switch.When I made this goal I did not know Penny was deaf! We’ve tried signs with little success and after talking with a speech therapist I’m going to switch over to picture communication as I think it will click better with her.
- Self feeding 25% of the time She’s self feeding about 20% of the time. Mainly snack foods. She can feed herself mixey food with maximum assistance.
- Addressing her lazy eye and swallowing issues Her glasses are helping with the lazy eye and most of her swallowing issues have self resolved. We have to give her very small sips of water but overall she’s fine.
- Working on army crawling. Purposeful movement to get an object she wants No army crawling yet but her rolling skills have improved. We are working on core strengthening in physical therapy and she’s holding 4 point longer than before
- Building play skills She will play purposefully with a rain stick and balloon. Most other toys she still rolls in her hands and stims with. She could still use some work in this area.
- Strengthening arms with weight bearing She’s getting much better strength in her limbs! Her weight bearing is definitely improved and I’m hoping with some more physical therapy we will see more improvements.
Moving Forward: One area Penny really needs some concentrated help in is communication. Signs have not clicked for her and do to her level of hearing loss any device that relies on hearing is out of the question. I’m hoping to spend some time creating some picture communication for her that I can introduce when I get back. I’ve seen some improvement in her strength and physical development recently with consistent physical therapy but now I think it’s time to really concentrate on communication. Also trying to get her as independent as possible with feeding.
Katherine (Old Goals)
- Attempting a better sleep and nap schedule We are still not there! Maybe with the cochlear implant but that might be wishful thinking
- Looking into cochlear implant Looked into, got her approved for a free one, raised the surgery fees, got the surgery, and it should be activated at the beginning of May!
- Getting an in depth assessment of her vision to see how she can best use what she has. Using a light box to work on the vision she has. We got an official diagnosis of cortical vision impairment (basically its her brain not her eyes that can’t see). We’ve been doing vision therapy with a light box and have seen some improvement with her ability to track.
- Sensory integration (spinning, bouncing, etc) and exposures to different textures We do this almost everyday! She’s still adverse to new textures but we’re slowly working on it.
- Drinking from sippy cup or open cup (no more bottle) When Sarah, the OT, was shadowing in my house we were working on straw drinking. The straw we were using has since disappeared but I’m hoping to get my hands on a new one while I’m in the States and work on this goal again!
- Using an object schedule Katherine has an object schedule but it’s been a challenge to get her caregivers to implement it daily. I’m still trying to decide how to proceed, especially once her cochlear implant get activated.
Moving Forward: Similar with Penny communication is going to be a huge area for us to work on in the upcoming months! I’m meeting with some auditory therapists while I’m in Texas with the hope of getting practical advice for doing therapy with Katherine to train her to hear. The first year of getting the implant is important so doing daily therapy will be a major goal these next couple of months.
Caden (Old Goals)
- Setting up room to do his dressing changes in that can be sterilized and kept clean. We never did get this done but we have been better about storing his supplies and keeping everything clean!
- Getting necessary documentation and funds to take him to EB clinic in Bangalore. There was not a clinic is March but the plan is to take him to the clinic in July. I did get the chance to skype with the doctor who runs the clinic and I’m hopeful for the practical advice and resources he has. I’m also talking to him about potentially placing a g-tube in him when we go to the clinic as his throat and mouth have been blistering bad recently and its affecting his weight gain.
- Working on crawling or movement to get toy out of his reach. He is finally scooting around to get what he wants. He’s gotten good at getting around and I’m thinking he will skip the crawling stage and go right into walking!
- Switching off rice and curd and onto food that has more nutrition. I’ve switched over to making more of his food so he gets more fruits, vegetables, and Pediasure.
- No more bottle! Drinking from sippy cup or open cup Caden is the master of the sippy cup! He loves to drink out of it and gets upset when I try to do it for him!
Moving Forward: Medically this has been a rough year for Caden. He’s been hit hard by infections and set backs. We really need to eradicate all the infections and get his nutrition better. I think getting a g-tube can help with getting him the nutrition he needs (he needs more than the average child because of his EB) and helping keep his body stronger against infections. Also he’s ready to start some preschool concepts soon as he’s a very bright little boy!
- Basic communication. Eye gaze for yes/no questions Still trying to figure out if Thomas is capable of this. I’m hoping to work more on communication.
- Better positioning in wheelchair and more time on tummy Before it got so hot Thomas spent most afternoons outside in his wheelchair! He seems to tolerate it pretty well
- Weight bearing to strengthen arms and stretch wrists. We worked on this for a little but but it made him so uncomfortable that I stopped for right now and just us the splints.
- Working on a resting hand splint to get hand in neutral position. He’s wearing his splints almost daily except for when I forget to put them on
- Gaining weight! He’s been steadily gaining weight and is relatively healthy at the moment
- Getting out into community more He has made it out almost once a month! India is not wheelchair accessible so it can be a bit of a feat but we’re working on it!
- Better pain management Physical therapy 2-3 times a week has helped with some of his pain. He still has some struggles
Moving Forward: Maintaining our recent progress and continuing to explore different means of communication. Trying to figure out how to fully tap into Thomas and getting him a more portable wheelchair for outings.
When I originally wrote goals back in December I had an inkling I would take another child at some point but I thought it would be an older child with physical challenges. Instead I ended up with my little peanut Abraham. We’ve mainly been trying to get him healthy and get a good understanding of all his medical needs. Thankfully they’ve determined that he won’t need heart surgery! Moving forward I want to get more weight on him and get him sitting up on his own.
So many great steps (both large and small) in the right direction these past 5 months! Around here we celebrate success in all its forms, whether its using a switch to ask for more time in the hammock or learning to crawl! These kids blow me away every single day with their perseverance and how they knock expectations right out the window.