Word to the Wise
1 month ago
We had a great first Christmas with the kids! More on that to come later. In the meantime...
Simply put, our kids are the most amazing thing ever to hit planet earth...short of Jesus, of course.
Things are gooood. It has officially been 6 months since we first laid eyes our Ellie and Elijah. Crazy. SO much has happened since then...it's really been a whirlwind. We have fought through multiple stomach parasites, ringworm, severe ear infections, MAJOR tantrums, and most recently, tuberculosis. We take bi-weekly trips to Charleston for Dr's appointments (we even got to stay at MUSC for 3 nights, quarantined in a nice corner room overlooking the bridge!). We have a nurse from the health department coming twice a week to give Ellie her meds, and we have 3 appointments a week for Elijah's therapy (speech, physical, occupational), as well as once a week with an early interventionist. And before the years end, we'll slip in a sleep study for Elijah, possibly a surgery to remove his tonsils and adenoids, and a surgery for Ellie's herniated bellybutton.
But seriously, we're doing GREAT. Despite our crazy schedule, we actually feel like things are calming down a bit. Weird, I know. Ellie is learning to keep her fingers out of her mouth (thanks to the great motivator: candy corn!). Elijah has grown almost 3 inches since getting home. 3 inches! And Ellie's grow a couple inches herself. Most notably, the tantrums are MUCH less frequent and severe. Ellie is learning to control her emotions and calm down. We've even begun the process to put her in school in January. Yeesh.
As for Erin and I, we're actually getting dates in now! We make parenting mistakes on a daily basis, but we're learning. And we're making sure Erin is getting the MUCH-needed time she needs to herself, to just have some QUIET and get refocussed. Add to all this the change in weather (starting tomorrow), football season, cute little halloween outfits (ballerina and football player), and family scheduled to come, and things are looking mighty fine for the Smith family.
Of course, I write this on a really good family day. Tomorrow, I supposed we could change our tune. But there is much joy and laughter in the Smith house these days. We are forever grateful for all those who have shared our journey with us. It's been an intensely difficult / amazing first 6 months. Thank you for walking with us and especially for your prayers and support. It seriously means more than we could ever express.
Our first moments of meeting "Rossette" and "Shyaka"
We are finally HOME!!! Can't tell you how good it is to NOT be stuck in a hospital room.
Ellie started her 4 TB meds before we left the hospital last night. All but one stayed down so we are hoping she does better with them today with a little more food in her stomach.
She is a happy girl this morning...just talking and walking around the house playing with toys. She is like a different kid knowing she can just go where she wants and play with whatever she wants to. She was especially thankful that she didn't have to get the tube put down her nose this morning and that her IV is finally out of her arm. Her stomach is a little upset from the medication and her neck is sore from the needle biopsy but none of that seems to be bothering her too much since she feels so free!
Elijah has had a rough time not being home too. He never slept well in the hotel room and definitely couldn't wait to get home. It is 8:20am and he is still sleeping...think that's a record for him.
Not excited that Ellie has to take 4 medications for 6 months but after all of the things we saw at the children's hospital we are so thankful that she has something treatable. There have been times this week where we have felt exhausted and overwhelmed but it helps to know that she is now on the way to getting better. We had amazing doctors and nurses which made this whole experience as comfortable as possible. We are still all pretty worn out so we are hoping for a few days of rest and refreshing. Thank you all for your encouragement and prayers...they have helped us through a very difficult time. Please keep praying for Ellie since the road to recovery will be long, filled with lots of meds and doctors visits.
Here are a few pictures I took with my camera on my phone (thus the poor quality). One is of Elijah praying with the Beaumont girls who were kind enough to make the trip up to Charleston to visit Ellie. Yes, he's a silly one. One is of Erin trying to feed the kids in the hospital room...not the easiest thing in the world to do. And the other two are of Ellie and Erin doing the tube through the nose and down the throat procedure on her dolls that Ellie had to have every morning.
Oh, and there's a video of Ellie and Erin dancing to the TV. =O)
First, a correction. I accidentally said Ellie would be getting a biopsy on her thyroid...not true. It's actually a lymph node they'll be doing that on. Silly me.
The biopsy is at 2:45 this afternoon. Then they'll try out her first dose of meds and wait to see how she reacts before releasing her. Hopefully, we'll be sleeping in our own beds tonight...after driving home through the outer bands of hurricane Irene!
We'll let you know how it all goes!
Just a quick update to let you know that nothing really happened today. Ellie was rudely woken once again with a tube going down her throat to get some juices from her stomach. Other than that, we continued to hang out in a hospital room all day long.
Unfortunately, even though she's not contagious, the hospital has policies. When the word "tuberculosis" is used, it means masks, gowns and gloves for everyone who enters the room (except for us). It also means that Ellie is quarantined. That's right. Poor little 4-year old bundle of energy that isn't allowed to leave the room for days on end.
Tomorrow, they'll take a biopsy of a thyroid in her neck sometime around mid afternoon. She won't be allowed to eat until after she wakes up...so that will be interesting.
Very, very grateful for visits from the Beaumont girls yesterday and from Kent Knapp today. Really helps with the monotony of the day.
Praying tomorrow goes well and we can come home!
Still hanging out at the hospital here in Charleston. Wahoo!
So here's the latest. Ellie definitely has active tuberculosis. Now, we're trying to figure out where all it has spread for sure. So, we'll be having a biopsy hopefully sometime today. It's possibly in her neck, armpits and groin area.
The best news of it all is that it is NOT in her lungs. For all of you who are worried about whether or not you need to be tested...please rest easy! She is NOT contagious! It is also not in her spinal column, so the doctors are confident she doesn't have spinal meningitis.
The doctors are trying to determine if she is resistant to some of the drugs she needs to get rid of this. It's possible she'll be on four different medications for at least 6 months.
That's the latest from Charleston. We'll try to keep you posted! Thank you SO much for your prayers!
Erin, Elijah, Jeremiah and Ellie Smith (Bluffton, SC)
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