Neurologist Today

Ok...so I just had my first minor breakdown on the phone with Tiffanie...T-thanks for listening and thanks for the pep talk! I'm not really sure what brought me to it...just overwhelmed...dr's appointments, prescriptions, therapy, home health, Elise and Lydia's therapy homework that I am supposed to do at home while also providing quality time with Audrey, clothes, dishes, toys, bills, clothes, and did I mention clothes?? Trying to keep in all in my brain is hard enough....not to mention carrying it out. I have several lists and my trusty calendar that I try to keep up with to keep me in line...it's a challenge. And doing most of this with a husband who's a coach...which translates to 'without a husband'...he is such a big help when he's here...the problem is that he's rarely here. I am so thankful for all of the help that I do get! Grandparents, aunts, and friends have offered so much time and I am so grateful for that!! It is just so hard to receive help...silly, I know. Aunt Becky and Aunt Leigh have offered to help with Audrey and Elise's taxi-ing to and from school...which is an enormous help! Now I'm worried about the girls, especially Elise, adjusting to that new routine. She has been so attached to momma lately. I know that I have to take the help and let it go...prayer in place of worry.

I think another thing that has gotten me a little shaken up is that Dr Hollman wants to keep Lydia on the ACTH shots now for the duration...I had really had my hopes up that she would stop it, but after talking to her, I feel like it is the right thing to do. It is just so overwhelming too. Dr. Hollman was pleased with Lydia's cooing and smiling that she saw today...she was also doing some cackling, as Dr Hollman called it. She feels like (and I do too) that the medicine must have something to do with it, especially since she hasn't had any more spasms since she started taking it. She said that it sometimes takes babies up to 2 weeks on the med to rid the spasms. She is also still puzzled by the fact that the EEG was normal again, but it does not mean that she is not having infantile spasms...there have been other babies with spasms and a normal EEG..just not many. I also brought a video tape of a portion of one of them, and she said that it was positively an infantile spasm. We will continue the shots once a day until Feb 1. We will then begin to wean her by giving it every other day and decreasing the dose every few times. She will complete the process on Feb 28 (I think....I have it written down.) We talked about the fact that her face will get really big (swollen). I looked at some pictures online of another baby that took it last night...that makes me sad too. It just looks so uncomfortable. Martin says he is not concerned with that at all...she needs it, and he's ok with it. I know she needs it too, and I know she'll be fine even when her face gets so big, but I hope it doesn't make me cry out of sympathy every time I look at her.

Dr Hollman thought that Lydia's head control was better too...still concerned that she is not picking her head up yet while on her belly. She wants us to keep working on that. She is also still concerned about the up-going big toes. She said it means that messages from the brain are not reaching the spinal cord properly (that's my layman's terms)...there was a name for it, but I can't remember that right now. A new concern: she found that her ankles are starting to stiffen. There was resistance when she tried to move them, and she didn't notice that at our last visit. She said that that could possibly be a sign of cerebral palsy later down the road. She still had no diagnosis for us, which she says is a good thing. Dr Hollman says that she likes to tell her parents it is better not to know, because if you know a name for it---it is always bad. She said that there are no diagnoses in neurology that are ok. She was encouraged by the cooing and smiling. She says that shows improvement, and improvement is better than a diagnosis. She said that Dr Wood had called her to talk about my questions about possible thyroid causes for Lydia's troubles. She said that she is not considering that at all...she said that hypothyroidism does not cause these kinds of problems this early. She said that it is important that she take the thyroid medication because it will prevent other problems that could be caused by it, but she's not worried about that as a cause right now. Lydia's head growth did not fall off of the chart yet...Dr Hollman was pleased with that. There may have been a little drop from last time, but still in normal range...that is promising news. She was concerned, though, like all other drs, that her fontanel was very small. She said that the sutures were not closed (which is what dr Lutfallah wanted us to be sure of), but that the reason the fontanel has not gotten larger is because the brain has not forced it to. She explained, as Dr Superneau had, that the head and soft spot on the head grow because the brain grows...not the other way around. Fwehh...all very overwhelming...Thank you for your continued prayers...please pray for me to give my worries to God.