These are pics we took while still at OLOL, but too cute with the whole family in our LSU gear.
We are enjoying our care package from our friends at Sunday School… treats, books, magazines, spa care, personal care items, phone card, etc. Some of you have sent us cards from the website, and cards in the mail – both of which have helped keep our spirits high.
Braden’s seizures are getting fewer again, but occasionally we see some of what we saw with the infantile spasms, so we are a little concerned, but continue to pray that God will lead our specialists to the right actions for Braden’s case.
We heard back from our EKG, and while there are a few slight abnormalities, they said there is nothing for us to worry about long-term, and that the renal team will come up with a plan of action to address the high blood pressure, which was one of the expected abnormalities they saw… a particular valve was thickened due to the high blood pressure. He has a slight backflow in one area, but nothing significant enough to be considered a heart murmer. So Braden passes one more test!!! We won’t confer with the renal specialist until Monday for our plan of care.
When you have a special needs baby, you celebrate even the smallest of milestones, because you know just how hard your child had to work to get there, to be ‘normal’, to try to keep up with what his peers will do naturally. We are excited to report that Braden is playing with his hands a lot, he is experimenting with different ways to use his voice, and figured out how to stretch not just his legs, but his arms too when he is waking up. After two and a half weeks in the hospital, there has not been much time for our own therapy regimen, so we suspect we will have some ‘rebuilding’ to do once we are finally home again.
Brad’s folks are working with our friend Susanna to have our home tested, to make sure it is a safe place for Braden to play, live, and breathe. We may have to have some mold abatement done, in order to provide a healthy environment for Braden, as the previous owners were not prudent in using moisture-resistant materials in Braden’s bathroom, and the drywall behind the tile remains moist – a potential breeding ground for dangerous mold to grow.
For those who live in Wichita, SAVE THE DATE for SEPTEMBER 17th, as Brad’s folks are planning a fund-raiser dinner at our home church – I will post the details when we have them. I do know that this will be a FUND-MATCHING event, so any donation given, will be matched to the dollar by the church, to pay for Braden’s medical bills and needs. My family has also opened a checking account in Braden’s name that will allow for people to make donations too as well – we will post details on that when we have them as well. They will be putting information into local newspapers. We know that there are a few other things out there in the works, and we are so grateful to have such wonderful family and friends to help us meet our needs.
We would like to thank everyone who has sent us well-wishes, e-mails, cards, phone calls, prayers, and more… know that Brad and I realize how truly blessed we are to be surrounded by such a wonderful ‘community’ of family, friends, and acquaintances. Your words and acts of kindness are so appreciated, and we know that God is showing us his love through all of you. We also recognize that we could not get through this ordeal without putting HIM first, and trusting in HIS plan. We know that he is with us, as we read in Zechariah “…They will pass through the sea of trouble…this will strengthen them in the Lord, and in his name they will walk”, declares the Lord. We shall hold onto this passage, and know that God is with us on our journey to find answers and care for Braden. Thanks for continuing to lift us up in His name.
Kodi, Brad, Braden