Monday, August 29, 2011

So Much to Say!

Lily's birthday was really nice! They sang to her in her Sunday School class and we had a party at Peter Piper Pizza for a few of her friends and family. It might have been a little too over stimulating and she had 2 seizures. Poor kid. But she did enjoy her day.
So much to back up and update everyone one. When we took Lily to the new neuro he wrote her a rx for Depakote, it's a recycled med but from 2002, I didn't want to try a new med on vacation so we started 2 weeks ago and was going up slowly. Then the screaming started. Happy/mad screaming and lots and lots of crying. Not eating. I understand changes happen on meds so we were pushing through but by this Saturday she was just screaming and still seizing and Andrew and I made the decision to pull her off. If she is going to have seizures she isn't going to be taking a medication that makes her miserable on top. Maybe we should have stuck it through, but honestly my gut rules now and that's that. I'm honestly contemplating keto again, but I hate feeding Lily foods that aren't fun for her. When you have such few pleasures in life and you take it away, that just seems unfair. Seizures are unfair.
Last week we finally got into to see the Pulminologist which was a a whole lot to do about nothing. She reviewed her sleep study and said she had seizures, apnea due to neurological issues and apnea because of obstruction and now we need to see an ENT about getting her tonsils and adenoids out (I have such a hard time with that word, I want to call it android, random police gonna take me away). Anyway we have that appointment on Thursday. Pulminologist said if she can sleep better (which right now her sleeping is off the hook awful) by getting rid of the obstructions her seizure threshold may be higher and she may have less seizures. Now this isn't our first rodeo, I am not thinking for one second a cure will come as a result of loosing a few body parts, but it does make sense that is may help. The child is the worst sleeper ever so maybe, just maybe a full nights sleep would make a world of difference. And of course if this doesn't work then we move to C-Pap machine (ha). (HAHAHAHAHA) Right. The child with more sensory issues than teeth. HA.
I will update after that on Thursday.
I also wanted to update on Andi Jane also. We tried a medication for ADHD and it was awful. She was grumpy, falling asleep all the time, it was like she is PMSing all the time. I took her off the medication and called the Dr. and said I think we are going to try this thing naturally. And we have been and it is going pretty good. She has her moments yes, but she is in a class with a teacher that is really working with her and it is making an enormous difference, she is also working on control at home. She will always be a highly energetic child, she will probably always struggle with controlling herself, but at least she now understands and can work on it. I took her to a birthday party on Saturday and she said "Mom, Sarah asked me to stop hugging her so I did!" Yes small victory, but a child that has no respect for personal space, that was a huge accomplishment. I said "I'm glad you were able to tell Andi that you needed space, Sarah and Andi I am proud that you respect Sarah, good communication you two!" and they looked at me like I had a pot of flowers on my head.
We got back from our trip on a Friday and Andi was complaining about her tummy quite a bit off and on, but kids with tummy issues, you never know if it is nerves she missed a whole week of school and was coming back. Or we were on vacation eating different foods and on a different schedule. Saturday I was heading up north for a wedding shower and Andi wanted to come, but then she was doubled over and just feeling awful. I got her kids pepto but it would just come and go and she would be in some major pain. Finally by Sunday night she was miserable. Yes I waited til Sunday night. I said to her ok Andi if we go to Urgent Care they may draw your blood and it may hurt, she said I don't care I need a doctor and that was it, we went. Long story short X-Ray showed the poor child totally backed up, I mean almost to her stomach. It was so sad. Dr. said that really hurts. Poor kid. We had to clean her out. No need for details, but it was so sad to me. We spend so much time worrying about Lily and her poops, you just don't even think about your 6 year old. But it is fun being able to tell Andi she is full of poop and mean it.
Oliver is good. He is talking more, not too clearly, but he sure talks a lot. He says crunk using his dutch and german roots with the beginning sound, still wondering and waiting to see if he needs to get into speech therapy. He pooped and peed on the potty all day Wed and Thursday when I stayed home with him, he was pretty excited with himself. This was all on his own accord by the way. He also uses the doggy door and pee's outside. If that says anything.
So these are all the things I wanted to update you all on and just never find the time to do so. So much going on so little time.
You know 3 kids really changes things, I didn't think so in the beginning, I am noticing it much more now. I'm not complaining, just so so busy.

1 comment:

Anonymous said...

hey hope everything with lily goes ok kim

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