Alex and Maddy

Alex and Maddy

Sunday, June 25, 2017

Follow-up on Maddy

We were all happy to be home together on Wednesday! Maddy was still not moving, but seemed more comfortable in her own space.

Thursday was a crazy day with multiple follow-up appointments. Maddy and I started with Dr. Benzick, our pediatrician. Dr. B was happy that her right lung sounded better, but concerned about her left lung as it still doesn't sound great. He wants us to watch her closely and continue our antibiotics. He will follow-up with us next week to reassess. If her lung still doesn't sound great, we will repeat a chest x-ray and decide on treatment from there. Dr. B also wanted to be sure that our immunologist was aware of the bilateral pneumonia.

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.

As for Alex...from a hematology standpoint he has been great. It is hard to even remember the days when he required constant transfusions to keep his blood counts up. I did show Dr. Beam the picture of the mass that was found during his colonoscopy and we discussed the best way to image it further. he did agree wit all the other doctors that it looks benign, but will have to be surgically removed.

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

Happy together!

It's not easy when your dog is double your size!

It's Hard work being a Service Dog!
Maddy was a little more mobile Friday, but still extremely shaky. Saturday she seemed more stable as she is regaining strength. Unfortunately, we have run into another potential problem. Maddy has a lump next to her tube that is about the size of a marble and very tender to touch. She is not running a fever (although she is getting advil for pain). We will need to see Dr. Benzick in the next day or so to figure out what it is and if it needs treatment. 

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.

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