A quiet day of sorts. No doctor appointments, no test results.
Nicole did get a call from UNC Chapel Hill this morning. An appointment has been made with Dr. Maria Ferris on November 27th. She is a specialist doctor in the diagnostic complex care clinic at UNC Chapel Hill Children’s Hospital. Basically she will meet with Nicole and Brandon and go over Pyper’s records and make further referrals to other specialists if she feels there is a need. This will begin the road of 2nd opinions and possibly be the source of a Complex Care Team for Pyper, which is what Nicole and Brandon want.
I was able to get out to the lake for the first time today in almost 2 weeks. It was lovely to be outside in the fresh air. I needed to just be alone and clear my head. I was about 2/3rds of the way walking around the lake when I realized that I had not once thought about Pyper and the overwhelming diagnoses that find their way into my head almost continually now. It felt good. I don’t know if that is a selfish feeling on my part, but in being open and honest, it felt good. I realized that I had actually not been thinking about anything. It was like my mind had turned itself off for a brief period of time. Of course once I realized that I was “empty headed” it was like my mind turned back on. I started to think about all the people who are praying for Pyper and her family and how thankful I was for each one of them. At that moment I “heard” God tell me that Dean and I needed to be praying together for Pyper, not just as individuals during our own quiet time, but TOGETHER. So beginning tonight we will close out our day praying TOGETHER for our littlest one and her family. I love it when God speaks and I am actually quiet enough to hear Him.
Pyper has a busy day tomorrow. Tomorrow is another day full of doctor appointments and tests. I am claiming PRAISE over tomorrows visits and tests. Please join me in lifting up prayers specific for the events that will fill Nicole, Brandon, and Pyper’s day:
I am declaring SIGHT over Pyper. It is as simple as that. God gave her such big, beautiful eyes and He intends for those eyes to see His creation.
This is for her G Tube and “tacking” down the bowels so that they do not twist and cause issues.
12:30 EEG and Ultrasound
EEG is checking for or ruling out seizure activity, as this is a possible complication of the Septo-Optic Dysplasia. Now you know what this nana is claiming here…NO seizure activity will be seen on her EEG!
Ultrasound is assessing for Spina Bifida because of the dimple in her lower back. Oh Lord, there is nothing there to be found by an ultrasound except for a perfectly straight spine. This little girl will DANCE with her nana on her own two little legs!!
For a quiet sort of day my post got pretty long. Thanks for hanging in there to the end. I bet you thought it was going to be a quick read. 🙂
We covet your prayers for Pyper and her mommy and daddy. As you may think of them tonight as you go to bed and through out tomorrow please go before the throne of God and BOLDLY ask for miracles. Our God still performs miracles, and we are looking for and EXPECTING God’s miraculous touch to bring healing to Pyper’s body.
Today I am THANKFUL for Dr. Vereen (Pyper’s primary care doctor) who is fighting for Pyper so that she gets the best care that she can possibly get. She is “on it” !! A call from UNC Children’s Hospital so quickly and an appointment in less than a month !!
Today I am also THANKFUL for the sound of happiness in Nicole’s voice as she called to tell me about the phone call that she had just received from the doctor at UNC Children’s Hospital. I haven’t heard that in a while and it made this mommas heart smile.
PS by Dean:
Some people have asked how they can comment directly on this blog. In order to do so you must first be a registered user (click here to register), and you have to click on the individual post you want to comment on itself.
For instance, to comment directly on this post, you would need to click on the big date of Monday, October 30, 2017. Once you do that, a new page will open with just this post, and a box will appear at the bottom that says “Leave a Reply”. Please note, it will also say “You must be logged in to post a comment.” if you have not registered and logged in.
I know that may be a pain to some people, but without this added level, this blog could fill up with unwanted spam comments and advertisements.
Lastly, we have been announcing the new posts on FaceBook in case some people have not become aware of this journal, but we will not be doing that every time, so please register and share with others you think may be interested in following along. Thanks, Dean