We had to kill a little time in between appointments so we stopped to visit our beloved, physical therapist. Suzan was so happy to get a few snuggles and Maddy was all smiles to see "her Soozan".
We also followed up with Dr. Beam our hematologist. Overall, he is happy with how both kids are doing. Maddy's blood counts were the highest we have ever seen (not surprising with everything going on), but a good sign that her bone marrow responded which we haven't always seen in the past. He also wanted Dr. P (immunology) to be aware, especially since we are considering preschool in the fall. He is concerned about her overall immune system. Maddy attempted to take a few steps while we were at Dr. Beam's and she was so weak and unsteady, she had us all nervous.
Friday was a special day. Zoey came home! Zoey was supposed to be with her trainer for several weeks in April. We were supposed to pick her up the week that Alex got sick. By the time we got home and could coordinate a pickup there was only 2 weeks before our Disney trip so we decided to grab her after the trip. We have had two other pickups scheduled, but both times Maddy wound up in the hospital. Friday we were finally able to coordinate to bring our girl home. When we arrived at Hilton's she was so excited to see Alex. She has stayed by his side for most of the time since we've had her. We are so grateful to Hilton and the butler Family Foundation for working with Zoey and taking such good care of her over the past few months.
|Zoey trying to sit on Alex|
|She just couldn't get close enough to him|
|It's not easy when your dog is double your size!|
|It's Hard work being a Service Dog!|
I am going to do something I never do....I am not someone who is very into politics. I don't like the conflict and the deceit. However, we are at a very scary time. The uncertainty in healthcare should be frightening for everyone, but for a family like ours it is horrible. The concern is twofold. One, removing the protection for pre-existing conditions could leave both of my children with no insurance. Or premiums that are cost prohibitive to obtain. Reinstating lifetime caps on benefits could also be detrimental. Alex's care is astronomical in cost. His care has been well over the $1 million dollar mark. Secondly, Alex has medicaid as a secondary insurance. He has this based on a waiver aimed at keeping medically fragile kids out of nursing homes. Despite his having secondary insurance, our out of pocket costs are extremely high. On our taxes last year our out of pocket medical costs accounted for almost 40% of our income. We struggle to make ends meet now. Without the blanket that Medicaid provides we would not be able to pay the bills necessary to have a home and food to eat. This SHOULD NOT happen. Please take a moment to call your representatives and ask them to oppose the current proposed bill especially removing the pre-existing condition protection and the cuts to medicaid.
We need some specific prayers and thoughts this week.
1. Maddy to continue to recover and regain her strength with no further setbacks.
2. Continue to pray for Alex. His feelings are much like mine. He is shaken emotionally with all we have struggled with. He told me after he almost died in 2010, things got a little better each year. Now he feels like we are right back where we were. I have tried to reassure him, but it is a scary place for all of us.
3. Prayers for Bruce regarding a presentation he is making Tuesday.
4. Prayers for me as I am emotionally and physically drained.
Thank you for your continued support and love.