Michael -
- Mike had an MRI last Friday and we are waiting on the results which will tell us whether or not he will need surgery for his ankle (which he severely hurt by falling out of the attic on Dec. 22nd).
- He has still been in pain, especially upon waking and at the end of the day, but he is a champ and is pushing through. The ankle is still quite swollen and doesn't yet look like it's old self.
- Mike turns the BIG 4-0 on January 21st and I cannot wait to celebrate this man who loves and serves his family in so many beautiful ways! Seriously, he comes home late from work and gets right to parenting, taking over for me, helping with dinner (or making it for us), etc. He doesn't stop until around 1130, when we finally get kids asleep in their OWN beds (he stays in the boys room until they fall asleep). How many daddies do these things? God is good to give me THE BEST husband for me!
Conner -
- Conner has begun the braces process and had spacers put in last week
- He is super nervous for those bad-boys and his heavy tears remind me that he is still a soft-hearted little boy and not a teenager (or pre-teen, tween or whatever they are calling themselves these days).
- Conner now regularly helps me by feeding Lucy and he can do it all by himself, even checking residuals and cleaning up afterwards. He is a GOOD boy, you guys. I don't ever want him to feel forgotten in the midst of our chaos.
- He didn't get that computer for Christmas but is working hard for it for his birthday in Oct (if you see him, he may ask to do some odd jobs for funds;)).
Lucy -
- Lucy currently has severe infections in both of her sweet, little ears. It all started about a month ago and I'm afraid that the infection just never truly went away. I feel like I've failed Lucy as her momma and waited too long to have her ears checked by the doctor.
- She is now on some good pain meds and is receiving rocephin shots (we had our first round last night, our second round tonight and will end with the last two shots tomorrow evening).
- Even with the pain meds, Lucy was literally up ALL night screaming out in pain. It breaks our hearts and I can only hope that she understands when we tell her that we are helping her and that it will get better soon. Holy Spirit, will you show those things to Lucy's heart so that she knows she will feel better soon and that she will know her mommy and daddy are working hard to help her?
- Lucy is screaming as I write this (11:23pm), so please pray for relief of pain in the name of Jesus. Pray for immediate healing. Pray for peace to surround her body. Pray for stinging and aching to go away. Pray for angels to visibly surround her in her room tonight so that she will feel extra comforted and cared for. Pray for our night nurses too, as they care for Lucy while she is so agitated.
Henry -
- Because of God's goodness, we were able to see a PANDAS specialist this past Monday! It was WONDERFUL to be validated and to hear that all of Henry's symptoms and behaviors ARE INDEED PANDAS symptoms! There aren't any specialists here in OK and many of the doctors don't yet believe in the disorder at all, so it was a huge deal to know that, "without a doubt", Henry's testing, bloodwork and behavior all clearly pointed to the dreaded PANDAS.
- For the very first time, we had a doctor explain PANDAS to us! It was incredibly helpful, seeing that we've been getting most of our information from the real experts - other PANDAS parents, as well as from other places online.
- We set up a plan and have started all-natural supplements. We will also be tapering down Henry's strong meds because, as we have read, they can cause more HARM than good in children with PANDAS. Henry has done well in the actual taking of the new pills, which is a good thing. He understands the new plan, and he now understands PANDAS better.
- Unfortunately, Henry had a very hard time at school today and had to come home. The teachers and staff did the best that they could and my Dad even went up at one point to calm him down and get him back into the classroom. Henry is currently struggling from EXTREME separation anxiety (with me) and from OCD (specifically with him thinking he has a temp or feeling the need to check his temperature). These things are causing him to be a prisoner.
wasn't throwing a tantrum. He told me about Henry's "crocodile tears" and how "he couldn't
catch his breath because he was crying so hard for you, mommy!". Conner didn't want his
brother to get in trouble for this particular outburst. He said that some of his friends heard it
and were making fun of Henry and Conner quickly put an end to that, telling them that, "He
can't help it! It's his disease". It warmed my heart that God is allowing Conner to better
understand what Henry is dealing with. It made me so happy to hear that he had taken up
for his little brother!
Mike and I are still researching, still pushing, still asking questions - I want to know how to
help Henry at school. I want to see him succeed. He is so intelligent, of that we all are sure
of. I just want him to feel safe and secure wherever he is and right now, he doesn't feel those things. He cannot control his thoughts and he cannot control his body either
(he is also having verbal tics). Would you pray that God would give us wisdom as we try to parent and lead all three of our earthly children well?
- We are still learning SO much about PANDAS/PANS and want to share that information with you, just as we have shared with you information on NKH for so many years (leave it to us to teach you the rare stuff - ha!). There are many resources out there, but one of our favorites is the Pandas Network: http://pandasnetwork.org/
- For a simple list of PANDAS symptoms, check out this link: http://pandasnetwork.org/understandingpandaspans/about-pandaspans/symptoms/
- There is also a special site for doctors and medical personnel: https://www.pandasppn.org/
- Lastly, I share with you a link to a movie trailer concerning PANDAS. The movie itself will be released later this month, from what I understand. We invite you to watch, even for a few moments, to really see and to better understand this disease and all that it involves, particularly in the patients and their families: http://www.mykidisnotcrazy.com/
Oh, Jesus! Rescue Our Son! Deliver him from PANDAS! Heal Henry in the name of Jesus, for YOUR glory alone! Show us how to love him well, how to parent him well, Lord. Thank you for entrusting this Precious Treasure to us. We trust you to provide, Father. We trust you with Lucy and her infections and ask that you would touch her, relieving her pain, even as I type. Touch Conner's heart tonight as well, letting him feel the warmth of the love his mommy and daddy have for him, letting him know what a gift he is - showing him that he indeed is an important part of our family, God. You are GOOD, even when we don't see it even when we don't feel it. Thank you for answering our prayers and getting us into a specialist, Lord. Your timing is perfect and we choose to trust you on this journey.
In Your Holy Name I pray all of these things.
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