Today we give thanks for all of our blessings. This year we have experienced such heartache and grief yet we have been so blessed at the same time. We are grateful that Lily is alive, that we are together again at home, that we are healthy, that we have a roof over our heads and […]
We came home 4 weeks today. It has been a big adjustment for all of us but we are very happy to be together again at home. We have been feeling our way through the “system” of insurance, nursing care, home health supplies, etc. Lily has been busy Monday through Fridays with her therapies; most […]
Lily got in the spirit of Halloween (her favorite holiday besides Christmas) by dressing up as Princess Leia and hitting the neighborhood. Heather and Charlotte decked out her wheelchair with tinsel and glow sticks. It was a busy night with lots of trick or treaters and she seemed to enjoy being out with the masses. […]
Lily has been home a week and boy does it feel good. We are so thrilled to be together again under one roof, especially little sister Charlotte. Although it can be a bit overwhelming for Lily seems to be happier home–her blood pressure is overall lower than it was at the hospital. In the past […]
Lily had a CT scan and it shows no appendicitis. Everything is okay and we are cleared to go home today. So happy to finally go home and be together as a family under the same roof. It has been nearly 16 weeks since Lily has been home. We feel ready to go home and […]
Our discharge that was planned for today is delayed. The past couple days Lily has been very uncomfortable, not sleeping and crying in pain at times. And this pain has brought her spasticity back. 🙁 Now we are trying to figure out what’s wrong. On her last 2 X-rays there has been a “foreign object”/a […]
Lily is doing very well thanks to her new Baclofen pump. She seems very comfortable with very minimal spasticity. We are happy we made the tough to decision to have it implanted. We are still anticipating heading home by Tuesday. But as always we are just going with the flow because things can change at […]
Lily remains in the PICU today. She is recovering and doing well. She is being kept comfortable with moriphine but hopefully that wont even be necessary by tomorrow. And now that she has the Baclofen pump her doctor has already eliminated her other spasticity medication and is weaning another one. And boy what a difference […]
Thank you all for your prayers and well wishes for Lily and her Baclofen pump surgery this morning. Everything went as expected with no hiccups. She is still asleep from the surgery and is resting peacefully in Millers pediatric ICU. We will keep you posted on her recovery. God Bless, Leslie
Well, one of the days we have been waiting for finally yesterday. We finally received confirmation from Lily’s genetic testing whether or not her cardiologist’s suspicion’s were right; if she has CPVT (Catecholaminergic polymorphic ventricular tachycardia). Her results were POSITIVE. I’m relieved that we now know for sure but terrified if her little sister Charlotte […]
