Thursday, October 22, 2009

Not much to report

Emily is doing better the last couple of days. She has been acting more like herself. Smiling and laughing a little bit more. She has been more vocal too. She still seems a bit more irritable than usual. She will cry and we have no idea why, but the crying fits are not lasting an hour or longer, so that is good. It could just be teething or plain old two year old crankiness.

The thing that scared me the most about Emily's seizures is that they looked like infantile spasms. That terrified me! Now every movement, every cry, every odd thing she does makes me wonder. Is she having a seizure? If so, what are these seizures doing to her brain? This afternoon, she woke up from her nap crying. I ran in there expecting to see a seizure, but I think she was just hot. When I took off the blankets and talked to her a little, she calmed pretty easily. She did seem to have a little bit of seizure activity this afternoon when her OT arrived (before her therapy even started). Just a few little odd movements that just lasted a few seconds. She had a pretty mellow therapy session today - some stretches, massage and playing with textures a little bit.

She will not be going to OT tomorrow. Before they will allow her to return to therapy, we need an OK from the doctor. We may just wait until we see the neurologist - we haven't really decided yet. Her PT through First Steps will call her pediatrician for an OK to continue with her therapy. And we will go to her horse therapy appointment next week, but she will not ride a horse, she will just have a regular PT appointment. They will not feel comfortable putting her on a horse again until we talk to the neurologist. I tend to agree.

We called our pediatrician to get a referral to Cincinnati Children's. They sent some info yesterday and I was able to call today for an appointment. The earliest available is Dec 10. I was hoping for something sooner, but I took what I could get. Our theory at this point is we will go to our neurology group on Nov 6 and if we don't feel like we are getting the answers we need, then we will head to Cincinnati in Dec. If we feel like we are getting somewhere with our group, then we can always cancel the appointment in Cincinnati.

At this point, I am completely drained. I have been thinking and thinking this through until my brain cannot think anymore. I have been doing some research, but have tried to keep that to a minimum - have you read some of the crazy stuff they put on the internet? The bottom line is that I don't have the answers. We need to see the neurologist. Emily needs to get an EEG so we can see what is going on in her brain. Until those things happen, we are just going to have to wait. Waiting can be really hard sometimes...


Kerrie said...

I think that's a great plan to keep both appointments for now and see what happens. We had to wait 3months for our first appointment in Cincy, then we were in the hospital and had to wait another 2!!

I can't help but giggle when I think of Emily getting an EEG - ONLY because she has sooooo much hair - they are going to have a good time getting the wires on!!

Praying for good results for everything!!

Stephanie's Mommy Brain said...

Praying you have peace about your decisions and wisdom for the doctors.

bluee19 said...

Hey Dawn,
I have been thinking about you guys this whole week and hope that Emily's seizures will go away. I hate to depend on these types of medicines to stop these seizures. Samie take Keppra/Topamax and I can't wait until the day she is off them.
Its know how frustrating it can be, been there and done that. Re: EEG, the only drawback is having to keep the child up for long period of time so when you have the appointment, the child will be asleep. I know that you are on pins and needles. Its horrible for any child to have seizures. I hate seeing them and keep praying WHY!!! I will only know the why when we meet face to face with Jesus.

God Bless and thanks for keeping us posted. I love reading your detailed blogs.

In Christ,
Nicole from Rosemead, CA

Big brother, Little sister. said...

Dawn thinking of you and EMily, I agree with keeping options open and seeing the 2 appointments through. I hope EMily settles soon and is back to he beautiful self :)

Katy said...

This may or may not make you feel better, but it is extremely rare for a child of Emily's age to get infantile spasms. If you are concerned that it may be IS, however, I would call the neuro's office and let them know that. That may affect their medication decision and they may try to squeeze you in sooner. You definitely need an EEG ASAP.

IS also has some rather classic "tells." Please feel free to e-mail me if you want to discuss any of this further.

Good luck--the seizure thing sucks and I'm sorry, but that's the best way I can put it.

Amy said...

Praying for all of you!

Isn't it amazing that the access to so much information via the internet can really be nerve wracking! So much to sort through and figure out! Sometimes I have to make myself not read!!

I heard a rumor that you might be coming this way? Not sure if that is true or if plans are changing (totally understandable)!!

ajourneyinmommying said...

I was just thinking about you guys today and wondering how you are so I popped in to check. Wow! I'm praying for you guys as you process the options. I have to push away from the computer research sometimes, too. I have also been known to call a neurologists office and ask if there is ANY POSSIBLE way to get in earlier. I don't know if it was the desperation or the tears...or maybe just an opening that came along at the right time, but we have been worked in more than once when we had a big concern about something. Hugs to you all!! I love the picture of Emily at the hospital in her hospital gown! And her smile when you said her name in the birthday song. :) Love, Christie