Monday, August 11, 2014
Thank y'all for all the prayers and checking in with us to see how we are doing this week! It is so encouraging to know that we are not alone...especially as this journey has turned into a long one with no real end in sight. Thank you for persevering with us.
It's been pretty rough lately. Last week, Milla's seizures became worse and worse despite an increase in her Zonegran (the newest med). By Thursday, she was seizing constantly, it seemed. She's had no convulsive seizures, thankfully, but was most likely reaching the 250-300 range in a 12 hour period while awake. She was just so out-of-it and just a mess. And to top it off, she had a couple of big spills that happened just while walking through the house. Her poor mouth is still very swollen from a fall she had a week ago and 1 fall caused the roof of her mouth to open back up again...pretty painful (and quite bloody). And yesterday, she tripped over Frazer's feet and tagged her cheek on our (very hard, very wooden) coffee table - she doesn't tend to attempt to catch herself with her hands and goes down so fast. She's sporting a nice shiner today. Many people have asked about using a helmet, but all but a couple of her falls in the last 8 months have involved areas that would not have been protected by a helmet. She's just so unstable even when she isn't seizing and her gait has gotten pretty bad in the last few weeks as well. Needless to say, I went searching for a 'soft' coffee table today. :)
So as of today, we are increasing her Zonegran again and increasing her Onfi as well. I'm pretty apprehensive about how she will be the next couple of days in regards to the side effects. I'm expecting her to be pretty lethargic...and pretty unhappy. And we are still waiting for the genetic test results. Waiting...as some of you may recall, not-so-much my strong suit. We have an appointment with her doctor next Monday and we are excited to get to sit down with him again pretty quickly (relatively-speaking) after the last appointment. Our list of questions is getting long! Please specifically pray that the genetic test results will come back this week so we will have some clarification for our appointment next week. How wonderful would that be?!
Please continue to pray for our hearts as I know you have been. Seeing Milla decline as she has this past week has been so very hard. Sometimes we feel pretty helpless in how to care for her.
Some good news is that her therapy went very well last week - without me! She participated fully and although there was some discouraging news, I was thankful that she enjoyed it and that they didn't have to come get me to help out with her. She started occupational therapy and I really liked her therapist (as did Milla!). This first session was an evaluation and I will receive the full report this week but one thing the therapist noted was that Milla had some muscle weakness particularly in her core. I was truly shocked! Milla has always been a very active child - always wanting to run and jump and roll and climb, etc. The unknown is if the muscle weakness is a condition that could be a clue to an underlying problem or maybe it's 'simply' a result of being in this uncontrolled state of seizures - and exhausted - and medicated - for so many months (which can be remedied once the seizures are controlled). I can't believe we have been at this for almost 8 months now. I'm tired just thinking about how tired her body must feel at this point.
In other news, the new house is well under way - our painters are working at breakneck speed! The kitchen is fully demo-ed and framed up. All the plans are in place and most of the big decisions are made. Whew. THANK YOU to those that have helped us get to this point. We could not have done it without you!! It has relieved so much stress partly because we've had to make such quick decisions but bottom-line having your professional and very, very gracious help is just amazing.
And the sign is up! Our midtown house is officially on the market! Please tell everyone you know - and everyone you don't know too. :) We start showings Saturday and the open house is Sunday from 2-4. (I think I told everyone the wrong dates with my last update - so sorry about that!)
Also, thank you for your prayers for Ann Carlyle. She officially started kindergarten today and while drop-off was a bit shaky, there were no tears and she made a new friend that was having a pretty tough time this morning. I think it was good for her to need to help this little girl and she wasn't thinking of herself and her own fear so much. She is definitely her father's child - makes friends in a nanosecond everywhere she goes - loves others so well. She's so brave - I'm pretty sure I was the painfully shy 5yr old on the first day of kindergarten with the quivering lip, tear-filled eyes, looking so scared and sad. Ann Carlyle goes up to kids all the time and asks, "will you be my friend?" I love that she has such a heart for others and the confidence to go out and bring them in. When I picked her up, she leapt into the car and exclaimed, "Mommy, I had such a great day at kindergarten!" So thankful for today. So thankful for all of you praying for Ann Carlyle. Please continue to pray as she has wet her bed 7 of the last 9 nights and complains all that time that her tummy hurts. I'm hoping that getting this week of school under her belt will relieve much of the stress she has been feeling and that school will also provide a kind of reprieve from the stress at home.
Some words from a great hymn based off of Matthew 11:28-30..."Come to Me all who are weary and heavy laden and I will give you rest."
Come ye sinners, poor and needy, weak and wounded, sick and sore.
Jesus ready, stands to save you, full of pity, love and power...
Come ye weary, heavy laden, lost and ruined by the fall.
If you tarry till you're better, you will never come at all.
Thank you again for all your love and support!! Much love from the Gieselmanns!
PS - Our address is 1781 N Parkway if anyone is interested in taking a look online. :)