Can I just tell you, I hate seizures? They really have to stop sometime soon. They were really bad today. Kendall has been sleeping better, but when she wakes up or is eating, she almost always has more. I can't handle it. They make me absolutely crazy. Seriously, it either makes or breaks my day. When they are mild, she does great. She eats, laughs, holds her head up, plays, looks around. When they are bad, it takes it all out of her. I mean completely wipes her out. We increase her Vigabatrin tomorrow for the last time. This is it. Please keep her in your prayers this week.
Our nutritionist was here today. Not surprising, Kendall has lost weight. We figured she would with the surgery. Fortunately she had gained weight a few weeks ago. She also grew a half an inch! Oh, and her head circumference grew too. We're now at 16.5 inches! Still making a curve...just waaaayyyy below normal... ( I don't know why, but I obsess over her head size, every time we get a new measurement I run home to plot it!)
Justin and I met with the attorney today to set up the Special Needs Trust and change our will. It is really difficult to think about how your kids will survive without you. Especially Kendall. We put a lot of thought into plans for her. But both of us feel like we can breathe a sigh of relief that we've taken care of it. It was definitely money well spent.
Justin's traveling this week again, so Kamden will be the man of the house. Good thing he knows Karate. (he asked me to write that)
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7 comments:
Wonderful picture!!
Praying and crossing fingers, toes, eyes, legs and anything else I can think of for your beautiful girl!!!! Man, that stinks that Justin is traveling again (where is he off to this time??), I hate when Kirby leaves but good thing you do have Kamden! You'll be in good hands!! Hugs, kisses and love to you all. I sure did miss seeing you guys this weekend!!!
Question? Does Kendall get one feed of pediasure a day? You know it does have alot of sugar in it. It was pointed out to me by Finnian's OT. We gave him the pediasure in smaller amounts through out the day so he didn't get sugar overload. It made a difference on him but it might be different with Kendall. Just a thought
She should take 16 oz a day, but so far we've only been successful getting 12oz/day. Our PT told us about the sugar too...hopefully the Pediasure is just a temporary thing. She's also still breastfeeding at night. Thanks for the suggestion. We'll try to spread it out.
Jocalyn is the 16 ounces total? Jude took 15 yesterday before he went to bed. We woke him up at 1am when the storms hit to give him another 6 and he took them. He isn't eating anything else with it though. No baby food at all. UGH! I am calling the dr today. I hope Kendalls' seizures get better. Jude's spasms have really increased.
Maybe it is the weather. I've noticed right before a big storm Kendall has increased seizures.
Doing 16 oz. total in a day (two full bottles of Pediasure) is what we would need to do to meet Kendall's nutritional needs since her eating solid food has been touch and go.
Kendall has never EVER taken more than 6 oz. of anything at one time...
Hey girl. Allison sent me your blog! We are praying for you!
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