Monday, July 27, 2015
Sunday, July 12, 2015
Back to Therapy, Back to WPB
Good news is her bone is all healed. Bad news is that her hip does not have the range of motion that it needs to have, and upon hearing that it made sense to me because she does have trouble walking still. Being the first time I've been through this, I didn't know what to expect and just thought she was still recovering from 2 surgeries, one of them major!! So Dr. Paley says to me, do you work? How soon can you get back down here to do 2 weeks of aggressive physical therapy? (His therapists are unique in their practice because the doctor's practice in general is very unique) so I quickly run my wedding schedule in my head and say after July 11. He says that's fine and that this should do the trick and he wants to "make a physical therapist out of mom"-which means we have a lot of work to do outside of the actual therapy sessions too.
I felt deflated after that appointment because I was expecting we would hear a positive update but instead it's back to the drawing board to sort out our 4th trip to Florida since November and how to juggle work, finances and family (little kids under 5) once again.
We realized even though an extremely tough decision, it was for the best that Sadie and I go down by ourselves and Sienna stays here, with family (Aunt Kelly and Aunt Jenny!) and daycare helping Jimmy! It would be very difficult to bring her to all the therapy sessions, fly with the two of them by myself, etc. so we are leaving right after we celebrate Sienna's 2nd birthday. I'm so sad to be apart from her and Jimmy for 2 weeks but I am hopeful that we can focus on getting Sadie's hip where it needs to be so she can:
1- walk with the greatest amount of ease possible while wearing her regular orthotic prosthetic
2- "graduate" to the next step in our process which is her 1st round of limb lengthening in the spring of 2016
Please keep us in your thoughts and prayers as we embark on this new round of therapy and still do our best to remain happy, composed, focused, and filled with love and enjoyment! ❤️. I don't know what to expect but we do have some fun plans to hang with friends who live in WPB as well as some other Paley patients. And of course swimming every day since that is very good therapy for her hip I'm told!
Here are a few recent pics and as usual, some quotes I've found that inspire and help tremendously.
Tuesday, March 24, 2015
Tiara is off! And other thoughts...
On March 5, we traveled down to West Palm Beach once again and Sadie had outpatient surgery to have her "tiara" (the external fixator on her hip) taken off on March 9. Dr. Paley said she has great movement in her hip and we are now back to physical therapy sessions 3 times a week with our buddy Nate at AGM Physical Therapy.
Once again there were "signs" pointing to positivity and I believe that are telling us we are doing the right thing. There was another little girl at the surgery center the morning we went, also to have her fixator taken off, and do you want to guess what her name was?? Sienna!! Her parents are wonderful and amazing people who we will keep in touch with now. They are both attorneys just like jimmy! She is exactly 4 months older than Sadie and completed her lengthening. Our anesthesiologist was wearing a Pittsburgh Steelers lanyard around his neck with his ID badge in it (in Florida, remember?). When we got to baggage claim in the CLE airport, "Home" by Philip Phillips was playing. If you scroll through my past posts, you'll see back in 2012 I said this was Sadie's song and we still say that!
I felt so much more confident walking Sadie into the operating room this time since I know the doctor is FABULOUS and all of his PAs are too. They are an amazing team performing life changing surgeries and life plans for children and adults every day. They all work so hard and put so much of their personal dedication into it. They give you hugs when you see them. Going to the Paley clinic feels like we are at the "mother ship". All kinds of kids wearing fixators, wheelchairs, going through these same medical situations.
We had to be at the Surgery Center at 5:30am, this was the first day after daylight savings time sprung ahead too, so you can imagine what time we had to wake up, basically the middle of the night. It was a crazy day - imagine your daughter being madder than the meanest monster on TV when she wakes up from anesthesia, complaining about the bandages so much that the nurses change them, but then call when we're finally on our way back to the hotel to tell us the Paley team said she can't wear the new bandages they put on and I had to change them when we got back to the hotel. Sadie was screaming so loud I am surprised no one came to our hotel room! Geez.
We did have a sweet moment the day after her surgery. Sadie and I went downstairs to the Embassy Suites "Manager's Reception" they have every night because she heard me talking about it and wanted to put on a dress and go down to the "party". :) So we went down and they gave her ice cream for free beacuse I was carrying her (she can't walk again yet) and I got a glass of red wine and got her cranberry juice. Then we sat by this pretty fountain and made wishes and threw coins in it. It was fun, and when I started wishing she would heal quickly she stopped me and said no mama -- wish for something that you want (all her wishes were books and costumes) so I switched mine to material things too, like a new bathing suit and a big real vacation to Disneyworld.
Every day is a struggle, to remain positive, to be a good role model for Sadie, to remind her of positive vision for the future, and to try to keep doing fun things although it is pretty difficult getting both of them out of the house and in any public place. And I'm still working too, and of course we have our sweet 20 month old Sienna with us every step of the way. But we will not give up.
I felt so much more confident walking Sadie into the operating room this time since I know the doctor is FABULOUS and all of his PAs are too. They are an amazing team performing life changing surgeries and life plans for children and adults every day. They all work so hard and put so much of their personal dedication into it. They give you hugs when you see them. Going to the Paley clinic feels like we are at the "mother ship". All kinds of kids wearing fixators, wheelchairs, going through these same medical situations.
We had to be at the Surgery Center at 5:30am, this was the first day after daylight savings time sprung ahead too, so you can imagine what time we had to wake up, basically the middle of the night. It was a crazy day - imagine your daughter being madder than the meanest monster on TV when she wakes up from anesthesia, complaining about the bandages so much that the nurses change them, but then call when we're finally on our way back to the hotel to tell us the Paley team said she can't wear the new bandages they put on and I had to change them when we got back to the hotel. Sadie was screaming so loud I am surprised no one came to our hotel room! Geez.
We did have a sweet moment the day after her surgery. Sadie and I went downstairs to the Embassy Suites "Manager's Reception" they have every night because she heard me talking about it and wanted to put on a dress and go down to the "party". :) So we went down and they gave her ice cream for free beacuse I was carrying her (she can't walk again yet) and I got a glass of red wine and got her cranberry juice. Then we sat by this pretty fountain and made wishes and threw coins in it. It was fun, and when I started wishing she would heal quickly she stopped me and said no mama -- wish for something that you want (all her wishes were books and costumes) so I switched mine to material things too, like a new bathing suit and a big real vacation to Disneyworld.
Every day is a struggle, to remain positive, to be a good role model for Sadie, to remind her of positive vision for the future, and to try to keep doing fun things although it is pretty difficult getting both of them out of the house and in any public place. And I'm still working too, and of course we have our sweet 20 month old Sienna with us every step of the way. But we will not give up.
The sweet side of our West Palm Beach doctor location is that it is only 2.5 hours from the happiest and most magical play on earth, Disneyworld!!! We are all Disney obsessed and were able to make a quick trip since we were over the weekend, to the Magic Kingdom!
Sadie is not walking yet and the therapy sessions have been challenging so far. She does not want to wear her brace, which we also had our awesome prosthetist Dean Frazier of Orthotic and Prosthetic Specialties update since we've been home from Florida to a 10cm difference/lift. She tells me that princesses do not wear braces and she doesn't want to walk. I think she just needs a little time and will walk when she's ready. I tried to stop pushing her too much. I think it was too much too fast for her first week of PT. I am so thankful we found Dr. Paley and he and his team offer the services they do. I will try to post more updates in the near future to keep everyone who checks the blog posted! Our next step is to do a check-up with Dr. Paley in June so he can see x-rays of how her hip has healed. This will make our tentative plans for limb lengthening in March - June 2016 definite if all goes as planned!
I am in the beginning stages of planning a few fundraisers to help fund our stay in West Palm Beach with some help from our friends. In the meantime, enjoy some pictures from our trip, the past few months and some quotes that help get us through our days. Thank you for your support!!!
"When life gets you down you know what you gotta do? Just keep swimming! Just keep swimming! Just keep swimming!" - Dory, Finding Nemo
"All our dreams can come true if we have the courage to pursue them." - Walt Disney
"All the adversity I've had in my life, all my troubles and obstacles, have strengthened me... You may not realize it when it happens, but a kick in the teeth may be the best thing in the world for you." - Walt Disney
Sadie is not walking yet and the therapy sessions have been challenging so far. She does not want to wear her brace, which we also had our awesome prosthetist Dean Frazier of Orthotic and Prosthetic Specialties update since we've been home from Florida to a 10cm difference/lift. She tells me that princesses do not wear braces and she doesn't want to walk. I think she just needs a little time and will walk when she's ready. I tried to stop pushing her too much. I think it was too much too fast for her first week of PT. I am so thankful we found Dr. Paley and he and his team offer the services they do. I will try to post more updates in the near future to keep everyone who checks the blog posted! Our next step is to do a check-up with Dr. Paley in June so he can see x-rays of how her hip has healed. This will make our tentative plans for limb lengthening in March - June 2016 definite if all goes as planned!
I am in the beginning stages of planning a few fundraisers to help fund our stay in West Palm Beach with some help from our friends. In the meantime, enjoy some pictures from our trip, the past few months and some quotes that help get us through our days. Thank you for your support!!!
"When life gets you down you know what you gotta do? Just keep swimming! Just keep swimming! Just keep swimming!" - Dory, Finding Nemo
"All our dreams can come true if we have the courage to pursue them." - Walt Disney
"All the adversity I've had in my life, all my troubles and obstacles, have strengthened me... You may not realize it when it happens, but a kick in the teeth may be the best thing in the world for you." - Walt Disney
Wednesday, February 11, 2015
Update on Sadie's Progress
It's been a chaotic few months but Sadie is doing so well! She has been walking on her own since right before Christmas so in January we were able to stop physical therapy (although we loved working with our buddy Nate at AGM Therapy at Heisley Racquet Club!).
She and Sienna actually went back to daycare a few weeks ago! It has been so nice for Sadie to be around her friends and get out of the house for activities again.
All our doctors say that Sadie's hip looks absolutely incredible. She will have an outpatient surgery soon for fixator removal, start some therapy again as well as wear a hip brace for a while.
From here, we hope for continued success in this adventure we've been on. As soon as we get back, I will begin fundraising plans for our next adventure: limb lengthening for 4 months in West Palm Beach. See the link to the right if you would like to read or contribute at this time.
Thank you to everyone for your support. We are all stronger because of this situation and blessed to have each other.
Here are some pictures from the past few months:
She and Sienna actually went back to daycare a few weeks ago! It has been so nice for Sadie to be around her friends and get out of the house for activities again.
All our doctors say that Sadie's hip looks absolutely incredible. She will have an outpatient surgery soon for fixator removal, start some therapy again as well as wear a hip brace for a while.
From here, we hope for continued success in this adventure we've been on. As soon as we get back, I will begin fundraising plans for our next adventure: limb lengthening for 4 months in West Palm Beach. See the link to the right if you would like to read or contribute at this time.
Thank you to everyone for your support. We are all stronger because of this situation and blessed to have each other.
Here are some pictures from the past few months:
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