Good morning everyone and thank you for coming back by to check on us.
We hope that everyone had a safe and happy 4th of July.
We had a good Holiday and spent it with family and friends at our house cooking out and swimming. It was a great day and we got the chance to relax and be home bodies for once 😊
Now that the Holiday is over, our family is focusing on Ceci’s next Medical Journey.
She had her pre-op blood work done last week and this Tuesday we head to see her Pediatrician to go over the results and to also perform her pre-op physical.
We are hoping her blood work comes back within normal limits. Ceci has a history of Anemia but with iron therapy we have been able to get it back under control and she has not needed to take it for a few months. Fingers crossed for nothing but good news on her counts.
Lately we have been having some further battles with Ceci’s needs and needed medical supplies, medications and wheelchair needs. It gets so darn frustrating to tell the truth!
The biggest challenge right now is her power wheelchair 😦 Ceci’s chair slowly has been going out for the past 6 months and we have been making due to the best of our ability. But now her chair is barely holding on. We are consistently having to power down the chair and hit the circuit breaker and pray that whatever code is populating will go away and she is able to drive it again.
Also it will no longer lay down for Ceci to rest in and stretch her body out, it can not recline back, her foot rest plates rarely will move to the position she needs it in, the shortcuts to maneuver her chair have gone out, and it isn’t holding a chair.
Please do not get me wrong, this is the best wheelchair that Ceci has ever had 🙂 And it should last her a lifetime with regular maintenance and repair of parts. But what we are dealing with right now, is a $4,000 part that her Medicaid coverage will not cover.
It is the Elevator part for the chair. This part allows Ceci to stand in her chair, recline back into the laying position and all the other functions that allow Ceci to have more independence like being able to raise her chair up to get into the freezer, cabinets, and anything else that is higher- out of her reach.
We are working with the company to see if maybe we can order the other parts and see if getting them installed will help some of these issues. We are also trying to work with DSCC (Division of Specialized Care for Children) to see if maybe they can help us out with this $4,000 part that is vital. I hope it’s something we can get figured out. We didn’t realize how much of a difference it makes versus having a wheelchair that can not rasie up, recline back, allow her to lay completely flat and so forth.
We are looking for a back up wheelchair for Ceci to use when this one is not working. Her manual chair that we bought years ago for PT is sadly on its last legs and with Ceci’s scoli getting so bad she can not sit up in it.
We have seen many companies now advertising fold up, light weight power chairs that you can stash in the trunk of the car. I think it’s so neat! With Ceci’s power chair weighing over 300 lbs, there is no way to transport her unless someone has my handicap van. But with a light weight, fold up power wheelchair, she would have so much more freedom to go with family or friends, and she could still keep up. It’s cray that some of these are 50 lbs and under.
I have been searching the online sites for a used one that we could afford. It would be very nice to have a backup chair for her. Her wheelchair is her life so when we have situations that leave us with a chair that wont function at all, Ceci is not stuck without a way to get around.
We will continue to pray on this and hope that either DSCC or another organization can help pay for the part needed.
This week is going to be a crazy busy week for me.
This will be one of my last pay checks for awhile and I need to get all the kids school supplies, make sure we are stocked on Medical supplies for Ceci, stock up the Cabinets and deep freezer and clean the house from top to bottom in the next 2 weeks to prevent infections for sis when she comes home. I swear when it comes to big surgeries like this I feel like a nesting mom and that there is not enough time to get everything done.
I also have to register the kiddos for school and the boys for fall sports. Not too mention prepare for our little man’s Birthday in August. Yikes! Too much going on. Sorry mommy rant for second there 🙂
Ceci is looking forward to getting some pool time in today. We are suppose to have a beautiful 82 degree day here in Rock Island and we love spending time together in our pool as a family. Love these sun shinny days.
Well everyone I better log off for now.
I have a few more hours of work to complete before i head home today.
We hope this reaches everyone in the best of health and happiness.
Lots of love and hugs,
Alexis (mom), Cecilia Marie and our family ❤
~Spina Bifida Fighters and Survivor~
Prayers 🙏 for all of you. Ceci your smile lights up a room. God’s got all of you in your daily battles. Don’t know if anyone would remember me. I see Dr Lin. Anyway had my hip replacement a year ago last month. Doing awesome! Would recommend Dr Nunley in St. Louis MO to anyone who needs him. Great at speciality cases. God Bless and Keep all of you!
LikeLiked by 1 person
Thank you very much for your ongoing prayers for ceci and our family.
We do remember you 🙂 Dr Lin is such a wonderful doctor. So glad we’ve had him on ceci’s team for so long.
We’re so glad to hear your doing so well after your hip replacement 💜
when would yo be able to meet me at Walmart. I will take care of the school supplies for the three of them.
LikeLiked by 1 person
Hi Brad, how very kind of you and your family 🙂
For all three kids, school supplies can add up so quickly. I believe last year it was over $200 😬
Are you guys sure you’d like to be school supply angels to all three?
Very kind for you guys to reach out. Thank you