Development

Yesterday at the Special Babies Clinic Alexandria's development was tested (it took about an hour and a half) and today at P.T. Alexandria's physical development was tested even further.

As far as physical development - it appears as though Alex's fine motor skills are fine and her gross motor skills are not so great. It's interesting because as the P.T. put it "Alex is very scattered" with what she does well and what she can not do yet. She can do some things that are hard to do and some easy things she can not do. The P.T. said that there is a pattern in all the scatteredness. The pattern is core strength. Alex either can not do or can not do well things that require the strength of her stomach muscles. The P.T. said that considering that Alex had 2 abdominal surgeries since August and also has not had much time to work those muscles due to all the surgeries, medical appointments, test, etc. her needing to work on her gross motor skills in that way is not surprising. Alex has had the opportunity and time to develop her fine motor skills while she had so many restrictions placed on her but not her gross motor skills...and anyone who has had abdominal surgery will have muscle weakness there they will then need to work on. For now I am to just let Alex be a kid and when we are home let her explore, play and such. Pretty much what I have been doing...Wish we were home more but all these appointments, even though necessary, keep us out of the house a lot and consequently they keep Alex from being able to roam around the house and play as much as she should and me from being able to work on all these things with her the way I would like. The P.T. said that as she begins to work with Alex on her core strength she will give me specific exercises to do with Alex at home.

Other development issues - Alex seems to be fine with her spoken speech (not great but fine) but not with her receptive speech such as understanding verbal language the way she should by now or following simple orders like "go get the ball." The lady who tested Alex's development at the Special Babies Clinic said that she was watching me with Alex during the test and that I am doing everything right in the way I speak to Alex and interact with Alex (very encouraging for Mom - phew!) and told me to keep on doing what I am doing because it is very good and I really can not do more that what I am doing already. She also suggested speech therapy in order to catch Alex up a bit. We are already on the waiting list for for Speech Therapy at CHOP (thanks to our Pediatrician). Today I found out that the earliest appointment available as of now for Speech Therapy is not till June...Even though this seems far way I am fine with it. Alex has weekly feeding therapy appointments that require exercises at home three times a day. She also now has weekly P.T. appointments that will require exercises at home as well. I can only do so much...And Alex can only do so much at a time also. My hope is that we will get in with Speech Therapy once the P.T. appointments are done and over with or at least under control a bit more.

I am exhausted...And I miss spending time with my baby girl. Alex is getting really demanding of my attention because she has not had much with me for a month now...She is also getting really annoyed with all the doctors and tests...I am looking forward to being home tomorrow, relaxing and playing with my baby! I miss her...That may sound funny since I am with her all the time but her sitting in the back seat of my car, being seen by a doctor and runny around don't count...I try to make it all fun and I interact with Alex a lot while we are in the car or in a doctor's office or running around but it's not the same as just playing with my baby and enjoying her. Plus, I need some down time and I need to let my mind and body rest a bit. It's been a very long month.

Amy and Isaiah are supposed to come over tomorrow. I am really looking forward to chilling out with a good friend...and Isaiah is Alex's favorite little man! I hope the weather won't stop our date that has been rescheduled 3 times already...but if it does I think I'm going to opt to stay in my pajamas all day! I have to pick up Alex's prescriptions tomorrow but the pharmacy is right around the corner and I can go through the drive thru. Hopefully they won't see my pj's through my coat...Lol! If I can't leave the house because of the storm I won't be very upset.

Steve has an early morning flight tomorrow to come back home. It may get canceled due to the weather conditions...We will see I guess...We have tickets to go to the Circus on Saturday...Hopefully the weather won't prevent us from going.

I was able to catch up with some things at home after our P.T. appointment and grocery shopping. I am now doing Alex's laundry and just relaxing. Its hard to stay awake thought...So I'm going to go to bed. Didn't realize it 12:30 am already! Not enough hours in a day...Good night everyone and thank you again for praying!

Oh, BTW - I ran into some Moms this month who without knowing that I have a special needs baby also were telling me how they feel and all the struggles they have. It was every refreshing...I felt like I was listing to myself. It was neat not to have to explain my feelings or thoughts or exhaustion and the reasons behind it and know that the person I am looking at knows exactly what I am feeling...because they are feeling it too...for the same reason. A silent affirmation...A a look that says "You are not alone." I guess that's why CHOP offers support groups for Mom's...but who has time to go????

I will let you know how the new feeding exercises are going. I got new "reward" toys on Tuesday and today I got some Pink Lady organic apples that I peeled, cored and steamed and made into apple sauce. Tomorrow we begin and on Tuesday is our follow-up.