Many of you know that we will be celebrating a Make a Wish trip in February to Walt Disney World. We are so grateful to have this opportunity. It'll be a week just to spoil the girls after what's been a really trying few years.
I've been eager to find ways to support MAW and had planned to participate in the Walk for Wishes fundraiser. When the time came, I decided not to join because of Selene's health and everything we have going on. But at the last moment decided that was silly and that it would be amazing for us to go be a part of this fundraiser. To see all the people who love children like mine, children they've never met but who they want to gift this amazing experience out of love.
So just a few members of our family will be a team and we are hoping to raise some money in the next two weeks. The walk is October 9. If you feel so inclined to donate to Make a Wish we'd appreciate you doing it through our team- Beanie's Babies.
And hopefully next year we will be doing it once again and asking all of our family and friends to join us in raising money and then celebrating and walking together at the Zoo!
I'm still learning how to use their tools and website. Clearly I can't figure out how to rotate the picture on our page (I think that's more of an issue with my Chromebook) so hopefully this link works for you!
Donate to MAW through Beanie's Babies
Walk for Wishes
Thank you so much!!
Monday, September 26, 2016
Hope!
I can't believe that I was sitting here crying three weeks ago because of all of the things that Selene couldn't do. Today, I'm stunned at everything she can. She's begging to go outside and ride her bike, she climbs up and down off of our high stools, hasn't asked for the high chair in two weeks, jumps, runs, smiles, laughs, it's incredible. My mom was here this past week and swears she saw improvements from her first day to the last.
Selene is always happy but I've seen legit joy in her in the past week or two and its given me great hope for the coming months. Therapy is going great, both OT and PT have discussed the possibility of being done at the end of November, though we'll have to discuss that plan with the oncology team. She still really needs to work on the strength in her hands and the ability to open her hand into a full extension on her own (we can massage and stretch her hand into full extension now which is huge!). We also need to work on the flexibility of her ankles but her hips and knees have really improved.
We have been decreasing the steroids and are eager for them to be done. They've been causing havoc with her veins. They stuck her three times for an IV and ultimately never got it. She ended up having to take her prophylactic antibiotic via nebulizer at her last appointment, she wasn't thrilled with it at first but I would think she'd rather that than being tethered to an IV. We'll see what happens at our next appointment in October!
Selene is always happy but I've seen legit joy in her in the past week or two and its given me great hope for the coming months. Therapy is going great, both OT and PT have discussed the possibility of being done at the end of November, though we'll have to discuss that plan with the oncology team. She still really needs to work on the strength in her hands and the ability to open her hand into a full extension on her own (we can massage and stretch her hand into full extension now which is huge!). We also need to work on the flexibility of her ankles but her hips and knees have really improved.
We have been decreasing the steroids and are eager for them to be done. They've been causing havoc with her veins. They stuck her three times for an IV and ultimately never got it. She ended up having to take her prophylactic antibiotic via nebulizer at her last appointment, she wasn't thrilled with it at first but I would think she'd rather that than being tethered to an IV. We'll see what happens at our next appointment in October!
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| Can't stop won't stop |
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| it is NOT time to leave |
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| Ballerinas |
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| I'm saving my pennies to send her to Italy to sketch, this girl is all art all the time. |
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| Sit ups! |
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| Really working on more time in her "gloves" |
Thursday, September 8, 2016
"Are we going to play today?"
Whew. What a few weeks we've had. We're into the swing of school for Ainsley, therapy (which she finally knows is all fun and asks if we're gonna play), and just yesterday started school for Selene. Add in a lovely annual trip to a cabin in North Central PA and we've had quite a busy month.
Selene has been really trying hard in therapy, I'm so proud! But last night I was cleaning out the (5,000+) photos on my phone and went into this guilt spiral when I saw photos from March/April where Selene was sitting on her legs, running, jumping and using her hands. I know this isn't my fault but I'm constantly filled with what ifs and "how did it take me 3 months to get her treated."
My aunt sent me an article called "The Cost of Loving." It was spot on. Loving our children takes everything we have and more. The financial aspect of caring for them can't hold a candle to the emotional toll it takes. But as a dear friend keeps reminding me, I can't feel guilt, concern for her is one thing, but no guilt.
She has lots of change happening but I'm hoping it's all for the best. She's so painfully shy and I'm eager for her to broaden her scope beyond me and the family. Her preschool teacher was one of the teachers in Ainsley's preschool room is incredible. My heart can feel at ease knowing she is taking care of Selene, who is already smitten. "Do you think Mrs. B will get me out of the car tomorrow? Do you think she'll sit with me? Do you think she'll show me what toys to play with?" So that is a huge relief, knowing that her room of loving teachers is looking after her.
She did cry a bit on Wednesday, but she ended the day in smiles and I'm hoping for a better start on Friday.
You know what sucks? When normal things are not normal for your kid. I know that sounds petty, and at therapy yesterday we saw a small child who really put our situation in perspective (CHOP has way of making you thankful for all you have), but it's still hard not to feel that way. Selene couldn't sit up at circle time, she kept laying down. For some children that could be seen as a behavioral issue. But Selene told me "It was so hard to sit up for so long." I didn't realize just how much time she spends on the couch at home. I told Miss Erin (PT) today so we started to work on "criss cross applesauce." She held it for a while at therapy and then tonight I tried to encourage it while she watched a show. She fought me...I just can't believe our reality is that our 3 year old can't sit with her legs crossed. I think that's all played a part in my guilt spiral.
ANYWAY. We've started coming down on the steroids and already see a huge change in her appetite. We're down to 6ml a day from 10, and I *think* tomorrow is 5, but I'll have to double check. I'm so ready to get my normal appetite Selene back :-) (So is the grocery bill.)
More Mom guilt is coming from extra-curriculars. All my friends are posting pictures of their kids going to dance/gymnastics/soccer. Dan keeps asking me when I'm going to sign Ainsley up. I just don't know where I could possibly add in one more thing. CCD starts next week and Dan will be taking Ainsley. We talked about doing dance right before it but honestly, I've been so overwhelmed that I haven't made any calls or set anything up. Yay, more guilt. But I just can't take on any more. During Ainsley's first year of school I was so excited to be homeroom Mom, now they ask for volunteers and I hide my face. Ugh! One day we'll be normal, right?
So that's life right now. Oh, I need to throw a shout-out to my amazing brother. Matthias has been my life line right now. I don't know many 20something year old men who would wake up early after a late night out to come take care of a crazy baby and put her down flawlessly for a nap or give up time with friends to get a 6 year old off the bus. But I just can't be more thankful for him and all of our family. Now if I could get another brother up here to spackle a wall for me I'd be realllllly happy ;-)
We're still taking all prayers, thoughts and fingers crossed for Selene. We're amazed and humble by all the people who send their well wishes. Thank you to all of you!
Selene has been really trying hard in therapy, I'm so proud! But last night I was cleaning out the (5,000+) photos on my phone and went into this guilt spiral when I saw photos from March/April where Selene was sitting on her legs, running, jumping and using her hands. I know this isn't my fault but I'm constantly filled with what ifs and "how did it take me 3 months to get her treated."
My aunt sent me an article called "The Cost of Loving." It was spot on. Loving our children takes everything we have and more. The financial aspect of caring for them can't hold a candle to the emotional toll it takes. But as a dear friend keeps reminding me, I can't feel guilt, concern for her is one thing, but no guilt.
She has lots of change happening but I'm hoping it's all for the best. She's so painfully shy and I'm eager for her to broaden her scope beyond me and the family. Her preschool teacher was one of the teachers in Ainsley's preschool room is incredible. My heart can feel at ease knowing she is taking care of Selene, who is already smitten. "Do you think Mrs. B will get me out of the car tomorrow? Do you think she'll sit with me? Do you think she'll show me what toys to play with?" So that is a huge relief, knowing that her room of loving teachers is looking after her.
She did cry a bit on Wednesday, but she ended the day in smiles and I'm hoping for a better start on Friday.
You know what sucks? When normal things are not normal for your kid. I know that sounds petty, and at therapy yesterday we saw a small child who really put our situation in perspective (CHOP has way of making you thankful for all you have), but it's still hard not to feel that way. Selene couldn't sit up at circle time, she kept laying down. For some children that could be seen as a behavioral issue. But Selene told me "It was so hard to sit up for so long." I didn't realize just how much time she spends on the couch at home. I told Miss Erin (PT) today so we started to work on "criss cross applesauce." She held it for a while at therapy and then tonight I tried to encourage it while she watched a show. She fought me...I just can't believe our reality is that our 3 year old can't sit with her legs crossed. I think that's all played a part in my guilt spiral.
ANYWAY. We've started coming down on the steroids and already see a huge change in her appetite. We're down to 6ml a day from 10, and I *think* tomorrow is 5, but I'll have to double check. I'm so ready to get my normal appetite Selene back :-) (So is the grocery bill.)
More Mom guilt is coming from extra-curriculars. All my friends are posting pictures of their kids going to dance/gymnastics/soccer. Dan keeps asking me when I'm going to sign Ainsley up. I just don't know where I could possibly add in one more thing. CCD starts next week and Dan will be taking Ainsley. We talked about doing dance right before it but honestly, I've been so overwhelmed that I haven't made any calls or set anything up. Yay, more guilt. But I just can't take on any more. During Ainsley's first year of school I was so excited to be homeroom Mom, now they ask for volunteers and I hide my face. Ugh! One day we'll be normal, right?
So that's life right now. Oh, I need to throw a shout-out to my amazing brother. Matthias has been my life line right now. I don't know many 20something year old men who would wake up early after a late night out to come take care of a crazy baby and put her down flawlessly for a nap or give up time with friends to get a 6 year old off the bus. But I just can't be more thankful for him and all of our family. Now if I could get another brother up here to spackle a wall for me I'd be realllllly happy ;-)
We're still taking all prayers, thoughts and fingers crossed for Selene. We're amazed and humble by all the people who send their well wishes. Thank you to all of you!
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| Adapting |
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| OT |
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| First day for Ainsley! |
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| I happened to bring pizza to clinic, she happened to ask for pizza....I have no words for steroid Selene. |
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| PT- There is now an "ostabacle" course in our basement |
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| Frank giving Selene a push |
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| Happy Selene makes my heart swell |
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| My favorite getaway of the year! |
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| First day for Selene! |
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| army crawling like a champ |
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| You've had too many blood draws when bunny gets a tourniquet |
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| This is a huge deal.... |
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| She was scared of the swing, but we eventually convinced her it would be a giggle fest...it was. |
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