You see, it can be difficult with Kinsley to find things to do. She has a limited number of activities that she enjoys and her attention span is not long and if I let myself, I start to feel sorry about all the things we can't enjoy together - movie dates, dress-up time, baking cookies together, craft projects, singing together, playing games, etc. These are the sorts of things I imagined I would enjoy with my child before we knew about her diagnosis. And unfortunately, those are just not things Kinsley can do or wants to do.
However, when I feel down, it helps to make a list of the things she CAN do and enjoys doing and make sure we spend time doing some of them each day. Every smile or laugh that comes from her over these activities makes all the sadness disappear and my every second with her so worth it. So here are some things we plan to do every day this summer (and of course we already do these now, but we can do them MORE this summer.):
- Swinging - we have a toddler swing hanging out back and I think this is Kinsley's favorite place in the world. The second she sits down in that swing her smile appears and the first push always comes with a squeal of delight. I seriously think she could swing for hours and enjoy every second of it. It's the best thing ever. She loves it. And I love how much she loves it.
- Singing - I mentioned this above and while we can't sing together, I can still sing to her, which she loves. When I sit her in my lap and start into her favorite songs, she just smiles and makes her happy sounds until each song is finished. If clapping is involved, she claps along too. This too she could enjoy forever. It only ends because my repertoire of songs runs out. (If you're wondering she enjoys songs like, "If You're Happy and You Know It", "The Wheels on the Bus", "Roley Poley Roley", "Where is Thumbkin?" "Our God is So Big", etc., etc. etc.)
- Bouncing on her trampoline - she received a mini-trampoline as a birthday gift and the girl loves it. If I help her bounce her body, she'll smile and ask for more until I run out of strength to continue.
- Dancing - I hold her in a dancing position and spin us around singing "Dancing, dancing, dancing, dancing," and she always wants more. Unfortunately for her I get motion sickness way to easily (yes, just spinning in a circle makes me sick) and this can only last a few rounds. But each happy smile is worth it.
- Blast Offs - This is more of a daddy game because he's much stronger than me. I can only do it with her in a pool. But this girl is an adrenaline junky and loves to be thrown in the air.
- Play ball - While Kinsley's ball skills are mostly poor, she does understand and is able to push a ball back and forth. She loves the cheers she gets with each pass and claps and smiles the whole time. It's much fun!
- Read together - Kinsley's favorite books right now are the ones with the sound buttons. Each time she pushes one of the buttons and hears the sounds, a smile crosses her face or her happy hum comes out. Needless to say, we have many of these books and we read them each day. But also, she's recently begun enjoying hear us read Cat the Cat books by Mo Willems (isn't he the best, btw?!). They are repetitive books for toddlers and she finds them so funny! It's so fun to watch her face as she listens. We only have two Cat the Cat books right now, but more will be purchased!
Kinsley will also be doing a summer program through her preschool for five weeks, three hours each week. It'll be in her same classroom and she will work to maintain her level of comfort, language skills and adaptation to school that she's gained this past few months. This is to avoid losing anything over the summer and avoid a rough transition back into school come August.
As for prayer requests in regards to Kinsley, I have some specific ones. First, please continue to pray for her to gain more balance. She's still not walking independently more than five or six steps consistently because her balance is so poor. She has the strength and desire to walk, she just has very little balance and control. So, please pray for that! She's become very good with her walker and is also constantly improving at walking with one hand held. I can take her into church, therapy or a store holding one hand with only a few balance checks and rarely a fall. I know that doesn't sound amazing, but a few months ago we could only walk a couple of feet that way. Now she can go hundreds.
Secondly, pray for her language development. She still only uses three signs and babbles, but without any words for meaning. I'm ok with whatever she is able to develop, but I know God is all powerful and can help her to gain more than we imagine. So please pray about this for us. She is currently working on using PECS (Picture Exchange Card System) during speech therapy and she's become quite good at it. It took awhile to get there, but she now can differentiate between two pictures and choose which item she wants and hand the card over to her therapist or me to receive the item. It's very exciting to watch because it shows us the understanding she has and we're very thankful for it. Currently she only uses it during therapy, when I do "home therapy" with her and at school, especially during snack time where she uses the cards to request food and drink. My hope and plan for the summer is to begin to adapt our home and environment where the PECS can be used more functionally throughout the day in order to encourage more language development from Kinsley. This is a big endevour though and I'm a bit overwhelmed by what all needs to be done (items she likes need to be re-organized, picture cards laminated with velcro will need to be placed at her level throughout the house, etc.) and I'm nervous that she's going to hate it (since it means her toys will only be available when she requests them now instead of just out where she can get to them like they have been.) But I will be good for her and hopefully all of this is leading us towards an adaptive device for her to communicate with eventually. Anyway, many prayers are needed!
My last prayer request is related to the gene therapies that some day may be available to help treat CMD. CureCMD, a research organization who are working on a cure for MEB and related diseases some day, recently announced a research grant that has been funded to them and they will be working on developing a gene therapy in mice with the affected FKRP gene. This is not the gene the Kinsley has affected (hers is POMGNT1), but it is a gene that causes a dystroglycanopathy (what hers causes too) and is very closely related. This is not a clinical trial or anything, but it's a great step towards that and what we've been praying for. Honestly, all the gene stuff and research about gene therapy can be somewhat confusing, but the big thing is they've started researching gene therapy in dystroglycanopathies. That's huge for Kinsley and kids like her. It may not mean anything would be available in her lifetime, but it COULD. So, keep those researchers in your prayers, please!
Thank you so much for loving our sweet girl and caring enough to keep updated on her and most especially, thank you so much to all those who are praying for her. On a regular basis I have people (all different people) tell me they are praying for her and our family. This is huge for her and for us. We so appreciate the support and love, but most importantly know that God is in control and it's through his blessing and help that our sweet girl has come as far as she has. All praise goes to Him!