The last few months have flown by for us! Many "Lily anniversaries" have come and gone since the last time we posted. The anniversary of our 1st hospital stay came on Valentine's Day. The anniversary of our 2nd hospital stay and her g-tube procedure came in March. Lastly, the anniversary of Lily's diagnosis came on April 7. It is hard to believe it has been a entire year since we found out that Lily had 1p36. It has been a very fast and event filled year.
In the year since Lily's diagnosis we have seen amazing progress in Lily's abilities. Lily's most recent accomplishment is her vision. In December 2007 Lily stopped looking at us. She had trouble focusing on things other than flashing light toys. It was devastating to us as parents. We wanted our baby girl to see us, smile at us, respond to us. In February of this year we were blessed with an amazing therapist who specializes in Vision Therapy. This therapy has changed our little girl. She is now looking at her brother and sisters. She smiles at us often. She follows toys more readily. She is focusing on the sign language we are trying to teach her so that we can communicate. She still has a long way to go as these moments of vision are brief...but they are there and we are thrilled!
Lily's gross motor skills have definitely taken a backseat to all of her eating, speech and vision accomplishments. In March/April Lily decided that she no longer wanted to stand. She no longer was interested in climbing up the step from the family room to the kitchen. She started throwing her head back violently each time we would put her in a position she did not like. She threw a HUGE temper tantrum at the place that fitted her for a gait trainer. (a special durable walker).
It only took me a month to figure out the problem...Lily's shoes were too small. Yes- it seems like a simple solution - but Lily's feet are really little. She had been wearing a size 4. When you press down on the shoe it seemed like they still fit. But with her orthodics...it must have been too tight. We got some new shoes a couple of weeks ago. She only increased to 4 1/2...but that was enough! She is much happier and our PT is relieved! We hope to have Lily using her gait trainer by this summer!
We are back to teething again - 2 year molars. These teeth seem to grow in the middle of the night...like 4am. Tylenol is once again our close friend. I make sure to give Lily her favorite blanket as often as possible - so that she can chew on it instead of her hands.
Also- this spring Lily went on several new adventures. I have been keeping her close to home this winter trying to avoid the nasty germs. But on Spring Break I took a leap of faith and took her out! We experienced all sorts of new things. We took Lily and her siblings to the Indianapolis Children's Museum, Monkey Joes (bounce house place) and Great Wolf Lodge in Ohio. Lily had a blast and handled all of the noise and over-stimulation very well.
Next Thursday our baby Lily turns TWO! What a wild ride these last two years have been! God has taken care of us thus far...so we are going to continue to put our faith in HIM and see what the next adventure will be!
***Jason and I continue to work on this year's 1p36 Deletion Conference. We are currently raising as many funds as possible for the conference. For more information about the conference or to register please visit http://1p36conference.blogspot.com.
***Lastly, I would like to ask for prayers for all those 1p36 families who have lost their children this past year. These are amazing families dealing with great pain and sadness.
1 month ago