One of the things are are noticing is how much running around wears the girls out, its something we have always known but something that is more obvious when you have multiple play date days in one week. That is good data. Our PT/speech team is working with us to document that as well. We are also going to do another eval for Jilli for OT. Her body only handles weekly therapy in 2 areas at a time and speech is still really a need because there is some really perplexing things going on there (the gaining and loss of skills has been really obvious lately and the pendulum is swinging a lot right now especially in speech... there is no logical reason for her to loose skills that she had). But there are some OT things we need to work on some more so we are going to do an eval to get an idea on some things and then they are going to give me some things to work on at home with her.
We are also going to start school this month because September is going to be busy medically so I want to get a head start and I am seeing some summer slide happening and we don't have room for summer slide in some areas. In other areas she is making gains in some things that she just hasn't had time to work on before and that is really encouraging.
My body has been reminding me some more of its "stuff"... every time I work on deep cleaning I am breaking out in hives which is making work take longer... my back is also a hot mess tonight but those are also the things that come along side connective tissue issues... plus its summer so I have had more dairy and corn then my body is happy with... that is on me.
I did get a call yesterday that we are now meeting with that new team this month. Honestly my first thought when I found out was that they were desterbeing our peace... how 9 of me... but in my head we had August off of most medical stuff and throwing a big meeting in took me wrapping my head around. Its funny because I think any time before this year I would have felt so happy and thankful to be getting this appointment but after this year I feel cautiously optimistic about it... honestly at this point in the year I am jaded in a way the last 6 years had not jaded me. That I will need to work on. I need to give this team the best shot. I need to walk in with an open mind. This part of the journey feels different to walk through... but we will walk.
Last week we also helped pack up our friends and send them off back south. We helped them move in 2 years ago but seeing them go was harder! We know they will be back every few months but goodbyes are always hard even if its just for a while.
Here are some pictures of our fun lately!
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| I ended up having a latex reaction on my birthday so we ended up spending some time at my parents that was not planned so Jilli and my mom made me a gingerbread Starbucks |
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| Jilli playing with my grandma's light brite |
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| Lydia and bumpa playing guitar |
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| Lydia after 20 min in the pool... its SO hard on her body but she loves it so much. She slept for over 3 hours after swimming |
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| I treasure this pic Linda took of the girls and I at the pool... I don't have tons of pics of the girls and I and this one just feels special |
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| Play hard... be exhausted... but sleeping at night still isn't her thing! |
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| Jilli has been LOVING this coloring book |
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| We went to DQ to thank them for Blizzard day for the hospital |
The really sarcastic part of me wants to send these all to our one team member who thinks we don't do anything but never asks us....
If you missed my last post you can click here to read it. Facebook was being weird with the link
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