Hi Everyone,

These past few weeks have been busy with the holiday season coming and going.  Maddie was even able to partake in opening one of her presents Christmas morning!

Over the past few weeks, Maddie‘s head/neck control and core strength have noticeably improved so now a lot of her therapy sessions are focused on sitting and bearing weight through her arms!  See below for some pictures.

As mentioned previously, her left hand fine motor skills are stronger than her right hand, but her right hand is starting to show some improvement.  Here she is showing off by playing with the bow in her hair.

Maddie continues to gain weight and eat well off of the g-tube.  We saw the GI doctor 2 weeks ago and if everything continues as is, the plan is still to remove the g-tube in March!  I’m now making her food from fresh meat and veggies so she’s not eating baby food anymore.  She continues to enjoy her fruits and is now also eating soft fresh fruits like pears, apples and bananas.  The most recent challenge/change we’re working on is drinking her milk from a straw.  She was very interested the first week and would giggle and laugh every time she sucked up some milk.  However, now it seems to be ‘old news’ and she’s more indifferent.  We will continue to try offering it to her everyday and hope she realizes that she’ll be able to drink more effectively from a straw than from her bottle!

Maddie’s teeth are also coming in full blast.  Just two months ago, she only had 2 teeth, but now she has 8 (4 on top and 4 on the bottom)!  See below for a “toothy” smile.  The iron from her liquid multivitamin was staining some of her teeth so we had to take her to the dentist to get a cleaning earlier this week.  She did not enjoy it and screamed/cried the entire time, but thankfully, the dentist was quick with the procedures.  Her teeth are now beautiful and white again!  Although never fun to see your child cry, the silver lining is that Maddie was at least able to show her displeasure at the situation, again showing an increase in her level of overall awareness.

Maddie’s eye evaluation mentioned in last month’s post turned out to be more of an introductory meeting to explain Maddie’s history and getting her into the system so they can order materials.  She’ll receive a more formal evaluation (where they’ll plot her on a chart and track her progress from there) sometime in the next few weeks.  We’ll keep you posted on that.  Maddie continues to show consistency with her reaction to light when the change is obvious (dark room to lights on or vice versa).  Additionally, when alert and not tired, her eye movements seem to be less erratic and trying to focus on things.

Although Maddie’s clusters of muscle twitches continue to occur, we’re thankful they haven’t worsened (still a few every day, some mild, some stronger).  We will continue to monitor and see how they progress.

Thank you all for your continued prayers and thoughts.  The holidays were an exciting blur of family and friends and meals and presents.  We’ve been able to thank some of you personally and wish to be able to thank everyone more.  We believe it is only with your support and intercessions that we have made so much progress thus far.

Again, we’re going to end with some happy pictures of little Maddie.