Fri 20 Apr 2007
Blackout
Posted by Jane under Updates
[12] Comments
So sorry about the communication delay. It’s been a very difficult week, schedule-wise and emotionally. Here’s the status right now:
Ramona is okay. Her potassium levels are still high, but no longer in the critical range. We will go in next week for a follow-up with the kidney diseases people and have another blood draw at that time. They weren’t sure what might be causing this problem so we’ll wait until Tuesday to hopefully find out.
Ramona’s cold is getting better. This is letting her keep more of her food down. We have also slightly increased her intake. We’ll weigh her again tomorrow or Sunday to get an idea of her progress.
Ramona was referred to a cranio-facial specialist to assess the assymetry that continues to be of concern. Some of the “flat spot” is positional, but there are some weird things going on with her skull and we’re trying to determine if they’ll correct themselves. If not, we’ll talk about any treatment that might be available. We’re hoping that none of her sutures have prematurely fused, as this would require surgery to correct.
Any palate issues have been tabled for now as treatments would not be available until she is older.
That’s it for now. All these doctors appointments have gotten me really exhausted and frazzled. So it’s great for us that Ramona’s primary nurses, Desty and Nicole, are coming tonite to watch both the babies. Andy and I plan to have some dinner, maybe a movie and just generally chill out.
Thanks for your prayers, I’ll update soon about her weight check.
Love, Jane.
How wonderful that you are going to have a break. While there is no confirmed “bad” news here I can see that these added medical concerns and appointments put more pressure on you which you don’t need.
I guess we’ll all be hoping for more weight gain this weekend as well as these kidney and skull issues resolving uneventfully.
thanks for the update jane. i’m wishing that this weekend’s sunshine and the real beginning of spring brings some deserved rest and renewal of body and spirit…………sarah p
Wow. I hope you both get a refreshing break tonight. Praying for your strength and the ability to take each day as it comes. Wish we could bear some of the burden for you… :/
I’m wiped out just reading your post. I don’t know how you guys are doing it. Yet, you clearly are. I’m so proud of YOU both, in the way that friends watch and are amazed as someone they know blooms out into who they fully are. Hang in there. You’re beautiful.
Hang in there is right. love to you all.
Still praying for Ramona. Have fun on your date tonight. Try as hard as it might be to NOT think about the children and just enjoy eachother for one evening. Enjoy the beautiful weather this weekend.
Andy and Jane
I work for Focus on the Family. While I was in the Atlanta area on business, I met with your mom and she shared Ramona’s story and picture with me. I’ve read through much of your website and my hear goes out to you and your family for all you are going through. I want you to know that we have put Ramona on our prayer list at Focus on the Family. Our prayers go out to you and your family as well. May God bless you with His comfort, rest and strength, and healing for Ramona.
Praying for you daily.
Much love,
Jackie (and Mike)
I am SO GLAD you guys get a break tonight. I hope you are having a relaxing time at this very moment!
Thanks for the updates. Indeed you’ve had a tough week. Jane, you always amaze me when we chat that you ask “how are things?” I don’t know if I would have the presence of mind to ask someone that given your current situation. And, like an idiot, I often share with you my latest dilemma (i.e. I wish there was some grass in our backyard).
Please know we continue to pray for all of you. I often check the site in the evening. After the kids are in bed, many times it’s the first question Mike asks me; “what’s new with Ramona?”
Michael & Jane are on the mend. Jane is especially looking forward to seeing her handsome curly haired neighbor next week. I think it’s her first crush. Well, second if you count her Dad. Let me know what day works best.
I hope you and Andy are able to enjoy your time together this evening.
love & prayers,
Molly
London Calling.
Hi Andy, Jane, Simon and Ramona. I’m safely back from London tonight – exhausted and very happy to be home. It was a long week…
I thought of you guys a lot this week – what I admire and value about each of you. It might be the jet-lag talking, or the pickled fish plate they tried to make me eat for lunch yeaterday, or maybe even that last Guiness I had at The Churchill Arms last night, but here’s what I thought of today about each of you during my 15 hours of travel to get home:
– Andy, I am proud of you for who you are, how you live and experience life, and very proud to be your brother. You are a strong, strong person blessed with great mix of no-bullsh_t and tenderness. I miss you and think of you often. I admire your talent and capability.
– Jane, I love you and your willingness to be open and honest. Thank you for including me and my family through it all. I value you and your absolute commitment to doing everything you can for your family – Andy, Simon and Ramona. I love your humor and ability to share your vulnerability.
– Simon, you are such a positive influence on those around you. You have such a sweet and happy personality and you bring a smile to my face each time your Mom or Dad share a story or send a picture!
– Ramona, you are a blessing from God and I am so thankful for the opportunity to know you. You are beautiful. You are strong. Your character has touched us all and has reminded me how much I value being a Dad to your cousins Connor, Sam and Jack.
Hope you guys have a great weekend!
– John
Thanks for that, John. I hope you have a great weekend, too. I imagine you might take the boat out.