6/25/09 update with pics

Lily is doing wonderfully. We had another visit to her neurologist on the 15th. She informed me that Lily's sleep issues (as well as apnea episodes) could be a result of low Ferritin levels that showed up on her bloodwork. Her recommendation is to bring up Lily's Iron levels. It's possible that Lily may sleep better once her numbers get better, so we've put her on an iron supplement, but it could take awhile for us to see any improvement. She recommended that we put Lily on a "sleeping pill" (Trazodone). This medication is typically used as an antidepressant, antianxiety medication, but is sometimes used to treat insomnia. From what I understand it is not approved for use in children or adolesceonts. It can also take some time to build up in your system before it starts working (about a week).

I was a little concerned in giving this medication to Lily. Part of me says, trust the doctor, but the other part of me says, trusting doctors is what gave Lily autism, so I'm leaning more on trusting God to give me all the "mommy instincts" that I need....so Lily's been on the medication for a week and is doing fantastically on it. She's still not sleeping regularly, however, this medication has turned Lily around in SO MANY WAYS. It's been a great gift. Her speech is remarkable and she is just SO HAPPY. From the very first dose she was a different child. She actually walks around saying 'Happy, Happy!" as if she has never known what it felt like before.
She is so much calmer and is able to relax and enjoy small things. Her attention is better and she seems to look at things differently, as if she is seeing the whole picture now instead of just pieces of it. I am so enjoying her joyous mood! She's not like that all the time (who is) but she definately is feeling better than before and it is making her progress so quickly. I'm not sure if the neurologist secretly thought this medication might help in other ways or not, but it has been wonderful. Lily has not climbed on anything except the climber that we bought for her...this in itself is a HUGE thing!

We went to speech therapy today and her therapist IMMEDIATELY said "this is NOT the same girl, what did you do?!!" I told her and she said that she was very interested in calling the neurologist because she just could not believe how different she is. Her eye contact and facial expressions are much more animated and she really has a greater desire to interact with others. She's able to speak so much better that the speech therapist said that when she gets tested again she may not qualify as delayed enough to receive services (if we lived in hillsborough county, pinellas apparently has higher standards thankfully).

Lily has really been able to get her feelings and wants acrossed for the most part. Last weekend before I left for work I told Lily that I needed to go to work and she slumped her shoulders down and made a sad face. Then she held onto me for dear life and said in a sad voice,"cry". She was such a big girl, no tantrums or actual crying, just an understanding that I had to go, but her wanting to let me know she didn't want me to.

The other night Lily was saying "House" very adamently. I asked her what she wanted and she said 'bye, bye", brought me to our foyer, pointed to my shoes and said 'shoes on". I told her she needed shoes as well, so she put her shoes on, picked up her diaper bag, said "bag", handed it to me, said "car keys" and "bye, bye" again as she opened the door. Unfortunately, it was 11:30 at night. I'm not sure she was expecting it to be dark out because as soon as she opened the door, she just stood there, lol. We went for a walk around the building and she pointed to the pond and said "water" and pointed up and said "sky". I'm still not sure just who's "house" she wanted to go to, lol.

Tonight a friend of mine babysat Lily and I was able to drop her off and Lily just gave me a wave and said "bye, bye! Love you!" It was the most wonderful feeling! Before we even went I asked her if she had wanted to go to her friends house and she remembered who it was and got very excited and jumped up and down and quickly got ready to go (that's another amazing thing). She usually will mimick my animation and get excited to go places but only because she's excited for "something" that she thinks will be fun, never anything specific. On the way to the car she said "Megan's House!!" and was giddy over it.

Lily still has a ways to go, but I could never have imagined how fast she would progress. Every night we pray for her to continue to astound us, and she does! Everyday is a gift and there seem to be more and more 'highlights" to my days. It's bittersweet though when I think of other families who aren't as fortunate to see such fast progress. It's really heart wrenching to me that there are other children struggling much more than Lily is. I only wish that weren't so. I fail to understand why that happens and what can be done about it. I know how truely blessed we are and I don't take anything for granted. We all celebrate small victories.

6/13/09

Well it has been quite some time since the last post. We've been very busy with lots of different day to day things. Since the last post we've had a visit with Lily's DAN Dr. which was promising. Her urine and stool tests came back better than before, but still a lot of yeast. We changed antifungal medications (for the third time). Since stopping the last antifungal Lily has really improved in several ways. She is much less hyper, has a greater attention span, etc. That antifungal really did a lot to her system. I hate trial and error, but there really is no other way.

Lily has not had any seizures that I have noticed, though shortly after the last post she did wake up gasping for air twice during one of her naps. This could be sleep apnea or seizure related. I happenrd to be looking at her when she did this, both times crying afterwards but able to get right back to sleep. I don't know how often she does this, but she does often wake up crying in the night (and always has).

We've cut down on her therapies, because at this point I believe that her sleep is her best medicine for improvement. For whatever reason her body doesn't seem to let her sleep more than 3-6 hour stretches, which she gets usually in 2-3 stretches in a 24 hour period. I hate waking her everyday to go to therapies. I think we will ultimately be doing just tuesdays and thursdays. Lily now says "mine" and seems to understand the consept. Lily has been talking up a storm and is putting 2 and sometimes 3 words together on her own. She still struggles with the apraxia but is able tell you things she wants and can be understood by mommy and daddy best, but her clarity is getting better everyday. Lily is routinely telling me "no' and protesting lots of things as two year olds often do. She is tantruming more for stupid things likes diaper changes, getting dressed and she HATES to take a bath and cries quite a bit in protest.

Lily is doing great in the pool and that seems to be a good, fun way for her to strengthen her core. We spend time in the pool most everyday. Lily's imaginative play has also increased and it is so fun to watch her. Her therapists continue to be very impressed with her progress.

I'll update more soon and put some pix up within the next few days.