I think most people don't have such broken kids so company's can take their sweet time passing out insurance information. Yea... uhm... that doesn't really work for us. We will need to get her daily shot medicine sent to us very very soon and, at $$2700 for a 2 month supply, it's not really a bill I wanted to be stuck with. It kept me up all night one night! We still don't have all of the information yet but fortunately if I need a prescription filled in a pinch we do have that stuff, no health info yet.
Okay, okay... on with the Dylan news. So Paula said that the doctor that reviewed the EEG made even a stronger case for Infantile Spasms and Hypsarythmia. Did I take this to mean it's worse? No... I just think he wrote it up differently and in a way that better justifies treatment with ACTH. Paula seemed pleased since the use of the ACTH was kind of questionable and this confirms that they are trying the right type of treatment. Dylan's Neuro wasn't in but Paula said she would talk to him and recommended another week of the full treatment. So... after 2 half-dose shots and starting the weaning process we are back up to a full dose. I ran all over the valley today to get more meds for her.
Speaking of running all over... it just made me so grateful that I have the opportunity to stay home with my kids. I get to thinking about having a little Dylan and having to go to work everyday. I know we would figure it out, but between appointments, meetings, therapists etc... I just can't imagine. We are so blessed. I am so lucky.
Speaking of Therapists appointments, Dylan saw a Vision Therapist on Wednesday for an evaluation. She came over to see if Dylan's vision is affecting her play and she did some preliminary tests. Dylan would follow something all over but when it's dropped she didn't look down like "Where'd it go?" It's hard because Dylan's definitely not at her peak performance but the Therapist did say she would like to see her every other week. So, okay, bring it on! Early Childhood Intervention is a government program but you pay on a tiered scale, and we pay a monthly fee so I will take all of the services they have to offer. Especially if they have someone available to help which is the greatest problem. When Dylan's better and back to herself we will also see about getting a Speech Therapist to see her as well. Then maybv we will just see the Physical Therapist every other week. Either way, I am not going to be the one to lessen the appointments, they will have to ask me to. I am selfish like that.
We didn't do much this week, still staying in for the most part although I have ventured out to Target and such. I don't think that type of getting out the house is as bad as some since she stays in the car seat... it's not like people are holding her and she's touching things like if we went to someone's house so I went for it.
Duncan's been a little crazy the last couple of days but only when Matthew's home. He's just extra needy and whiney. Even Ami said he didn't make a peep until we walked in the door and then he turned it up a notch or twenty. Course, we did get him up early so he was tired that day. He just wants Matthew all the time, just a sign that Matthew was gone a wee bit too long I think. I hope after this long weekend Duncan will relax a little. He fabulous when we are here by ourselves, I swear!
Duncan had his first Fruit by the Foot the other day...
You wondering what's over there? The TV.
He loved it, and I thought it was kind of fun to watch him eat it since he's never had anything like it before.
You can see that it's after the attempt at lunch right? There are peach remnants on his tray. I tried.
He had his 'crackers' in the back drink holders and his drink next to him on the seat. Dinner and a show.
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