Friday, December 30, 2011
Over the last few days we have learned the reality how different it is caring for a child with Levi's needs. He's now looking so "normal" it's easy to forget how different he is on the inside.
For starters we learned just how hard it is to break the routines of life and travel. Trying to stay on top of his meds while on the road and out of our normal routine was a challenge that took me by surprise. We didn't realize the toll that traveling can take on a family and didn't allow rest time when we got home from our Christmas excursion to Clovis and of course Levi got sick. So now I am learning that the flu, which would just be an inconvenience in a normal body is a major deal in Levi's.
He came down with what seemed to be the stomach bug on Wed evening, which Dan was fortunate enough to contract as well. Our first challenge was to figure out to to keep vital meds down his little body when it was rejecting everything else. We navigated that pretty well, or so we thought until the little guy just wasn't perking up the next day like we would have hoped. Since he does have a more complicated medical picture we couldn't take any chances and so I took him to the ER last night thinking that they would be able to make sure he was adequately hydrated and maybe to a blood test to make sure things were all in line. I should have figured out by now that things NEVER go as easy as you have it planned out in your mind when it comes to these types of things. So my quick trip to the ER turned into a night admitted to the hospital which has now turned into two nights at the hospital. His sodium/potassium levels have been all over the place over the last 24 hours, so we now hope to have those headed in the right direction at this point. Last night he got good rest with Dan at his side and we hope to be released today.
It's striking how different it is dealing with a hospitalization now verses a few months ago. This time around we have all sorts of familiar faces to run into and an unwelcome familiarity with doing life at the hospital that it almost makes it easy, annoying but easy.
I would like to mention a friends child, an 18 month old boy named Simon, who was admitted the same night as Levi, but only with a much more serious situation. He fell and hit his head while getting out of the bathtub and he developed bleeding between his brain and skull. His parents Rena and Jesse Fray had to lifeflight him to Children's for emergency surgery, by 2 of the same neurosurgeons that operated on Levi. He is in recovery, with very little known in the future. There is a lot of hope, as he's showing many good signs of brain function, but it's a long road to stability. Please keep them in prayer, as the journey they have just begun is near and dear to my heart. Here is a picture of the little guy.
Thanks so much for still tracking with us.
Kara and Fam
Tuesday, December 20, 2011
Our little Levi loves, and I mean loves Santa. Santa visited us early at a gathering and brought all the children a gift. After Levi opened his up, who did he run to to show his new prize? his dad? his mom? his brother? Nope. Santa, his new best friend. He's been lucky enough to visit with Santa twice this year and each time he ends his visit with a hug.
Along with Santa, I am glad to say that Levi has embraced the reason for the season, every time he sees anything candle related, he exclaims, "Happy Birthday, Jesus!" It usually comes out more like, "Birthday Jesus!" But none the less, he's excited about it.
Today, was the day I had been dreading . . .Levi finally figured out that he can take his patch off all by himself. And he took full advantage of it. Eventually, the little guy realized that he was fighting a losing battle and that he might as well deal with keeping it on.
I gotta admit the patching has been the hardest part of the last few weeks. He transforms or I should say regresses when he has the patch on and I don't blame him, he can barely see. It's hard because he is SO needy and whiny during this time. I have to remind myself that 2.5 year olds are hard and whiny in nature and that we'd be dealing with this anyway, but it's hard to know how to guide Levi into appropriate behavior when I know that he is deep down frustrated. It's also hard to get the hours in, last night we attempted to bring him to a Christmas gathering while wearing the patch and needless to say, it didn't work so well. If he's hard to deal with in his familiar surroundings while patching, imagine how that goes when he's not familiar with his environment.
I have been trying to embrace stay-at-home momhood and get them out to do "fun" stuff in between the other stuff that fill our week. This week, we dropped in at Legoland to take advantage of the snow and season's festivities. We had a great time, until I lost Kade. Yes, I full on lost him! Fortunately, Levi was a trooper during the 20 + minutes that me and the staff spent finding him. What a way to end my "let's be a fun mom" adventure. This photo was taken just before the incident.
I came to a moment a few weeks back on a day that my spirits were down, that I didn't feel like dealing with the cards that we were dealt and I thought I'd just surrender and accept that this part of my life wasn't going to be good and that was okay and I'd just be depressed. Ah, lame alert. I am so thankful for the message that I heard at our church a few days later about Supernatural Joy that reminded me that I had it all wrong. Instead of being subject to the ups and downs of our circumstances, we are to have joy in all circumstances. Fortunately, we are told exactly how we are able to do this because as I very clearly realized, we aren't able to do this on our own strength. Now the challenge moving forward is to keep those pesky temptations for a pity party under control by living out the lessons that I keep learning. Over and over and over. (If you are interested in the audio from the message, I attached it below.)
So, as I reflect on my past few weeks, here are my thoughts on my New Year's Resolutions:
1) Make sure I embrace my opportunity to be at home with the boys and make sure I cultivate opportunities for them to learn, grow and have FUN!
2) Daily focus on the lessons that I have learned and relearned this past year and focus on the scripture that supports them.
3) Don't lose anybody.
I hope you have the Merriest Christmas, and remember the true things of value in your lives.