The calls for fairness abound since Ella's surgery.   She is realizing and expressing her frustration associated with the confining nature of not only her hip surgery, but with SMA in general.  Much too much for a five-and-a half year old to have to endure. Cries of "It's not fair" have resonated throughout the house.  And she's right...it isn't fair. Before the surgery, Ella had never really claimed that life was unfair.  She gracefully accepted her limitations and often astounded us at her resilience, adaptive nature, and positive outlook on life.  When things seemingly were out of her reach she suggested a way to accomplish her goal in a modified way.  She has taught us that if you simply step back, take a moment to see the situation for what it is, take what you already have, and modify it to allow her access--then she can participate.  One of our goals in this healing process is for her to fully return to that inspired and wise child. ...

And so it continues... Ella is home.  By 7:40 in the morning it's just the two of us, Daddy & Ella.  She's making great progress as her pain has subsided and her spirits have grown.  We've embarked on a joint effort to establish some kind of routine and so far it's working well. Navigating a "Hip Spica Cast" is not without its challenges.  Everything we do is done in slow motion.  The name of the game is "slow and gentle".  From combing her hair in the morning to re-positioning her at night...slow and gentle. One area that has been undoubtedly challenging is our nights.  We have had three nurses since November of 2015 and are in the process of getting a fourth one. Our first nurse simply stopped showing up after just two weeks (nice, huh?).  The second nurse was a temporary for the first until the agency could find us a permanent one.  Finally, the third nurse came in January (2016).   As many of you may know, right fro...

Ella is coming home today!!! When I arrived at the hospital this morning, Ella was in GREAT spirits...talking, smiling, laughing, singing - our typical Squishy! Yesterday afternoon Ella fell asleep around 2 pm and didn't wake up again until 8 am this morning! 18 HOURS!! I guess she needed it :) Ella is tolerating her regular formula at the normal rate, she has minimal pain and she is VERY excited to go home! Ava, Henry and Ella are SO excited to see each other...they have missed each other so much! I can't wait to see the reunion :) Michael is feeling well rested and has done such a great job of being here and caring for Ella 24/7! He's going to be home with her this next week while I return to work and then the following week is Spring Break for all of us. We're hoping Ella can start returning to school after that! We cannot even begin to thank all of you enough for your thoughts, kind words and prayers!!! We will continue to update the blog with Ella's...

Overall, Ella has had a really good day! She slept a lot better last night (including a 5 hour stretch!). This morning the pain team removed her epidural and her Foley catheter was taken out. Michael and I have successfully changed a wet diaper since then :) We stopped Ella's IV pain meds (Dilaudid) and switched to oral Oxycodone (in her g-tube) and she's been doing fine with the change! She's continuing to tolerate her bland formula as we increase the rate. She'll be at her normal rate tomorrow morning. At that point, we'll gradually add the remaining ingredients of her formula, making sure she's not experiencing any nausea or vomiting. If things to continue to progress in the positive direction like they have today, our plan is for Ella to come home on Sunday! We know that Ella is really starting to feel better because instead of crying in pain, she's crying over silly things...like when her hair gets stuck behind her neck, or when the Disney J...

Slowly but surely, Ella is making some progress. Last night, she was able to sleep for stretches of 1 to 2 hours at a time. However, she continued to be in a lot of pain this morning. Here is where we are with pain management: We met with Dr. Grayhack and he ordered yet another IV pain med, Toradol. We think it might be helping! We stopped the analgesic (nerve-block) in her epidural, but we are keeping the actual epidural in her back. Once we see that she is ok without the analgesic, we will remove the epidural and urine catheter (currently planning for this to happen tomorrow morning). Tomorrow afternoon, we will try switching from the IV Dilaudid to oral Oxycodone (in her g-tube), both strong narcotics. In order to go home, we need to see that she can be off all IV pain meds, including the new Toradol that we just added today (only available through an IV). She will go home with Oxycodone, Gabapentin (nerve pain med), Valium and Tylenol for pain. Ella's heart ra...

Ella has been having a rough time. She is extremely uncomfortable. She's hardly been able to sleep. When she does finally drift off, it's because she's worn herself out by crying so hard. Then she'll quickly jerk awake from the pain. And the cycle continues. Ella still has a nerve-block being continuously administered through a lumbar epidural. She is on a strong narcotic pain killer in her IV. She's on Tylenol. We added a nerve pain medication. We added Valium. Nothing is helping to ease her pain. We increased most of her pain meds. Still not much improvement. Ella's heart rate has been very high compared to her "normal." And it has been constant. It has been ranging from 145 to 165 (even while asleep), sometimes spiking to 175. Her normal heart rate is under 115 and between 80 and 90 when asleep. Her team explained that the cause for such high numbers is pain. Ella's IV is causing her quite a bit of discomfort as well. It has bee...

It's been a long day. My alarm went off at 3:45 am. But of course, Ella was a trooper and full of smiles as usual when we arrived at the hospital :) Once the doctors and nurses started coming in to talk to us, some anxiety kicked in, so the anesthesiologist gave Ella a little something to calm her nerves...it definitely did the trick! The surgery lasted about three hours and it went exceptionally well! Dr. Grayhack was able to put the stronger plate and screws in with a little bone from Ella's pelvis for extra stability. He said the screws were holding the plate VERY well :) She will NOT require an additional surgery!!! Ella had a rough time coming out of anesthesia and was in a lot of pain (mostly her knee). She does not like her cast, even though it is hot pink and her baby doll has a matching one! She keeps asking every nurse and doctor if they can take it off (even if just for a little bit). She will have the cast on for 6 weeks. Right now Ella has a lumbar ...