Tuesday, June 14, 2011

Summer has begun

Wow! It's been quite a while since I've blogged. I think I don't do it more often because a) I've been incredibly busy lately and b) it's so emotional for me to sit down and think about my thoughts on things.  Well, the school year is finally over, but my summer will be anything but boring. I have multiple trainings coming up, the Chromosome 18 Conference (whoo-hoo), one daughter getting her tonsils taken out, the other daughter FINALLY having her cleft repaired, and continued therapies and doctor's appointments. On that note, a Kennedy update:
Kennedy has been doing great and making great gains! She is not crawling or walking yet, but she continues to do this butt scooting thing that we all think is just adorable! She definitely gets to where she wants to go.  With increased independence has also come an increase in her attitude and diva-ness! That child has learned to throw a fit, let me tell you!  She actually lies down in the floor kicking and screaming. This fit might be because she wants a drink from of bottled water (she's become quite obsessed with these) or just because she wants to get down in the floor.  She used to be our easy-going child, but alas, this is no more. It really is quite neat to see her finally react to things in such a typical way. She is growing up so fast!  She continues her speech, OT, and PT.
 Medically, Kennedy has been fairly healthy, save for a cold that turned into some kind of rash on her face. Actually, she still has spots on her face from that rash (the dermatologist didn't even know what it was).  She is still scheduled for a cleft repair and her 3rd set of tubes on June 28th.  We are so excited to finally be having this surgery.  We kept being told month after month from the time of Kennedy's birth that she could not have this surgery until she was drinking from a sippy cup.  This made absolutely no since to us because we really didn't understand the connection. We especially didn't understand because due to her cleft palate and low muscle tone, she never developed a suck.  She did not drink out of a regular bottle, she cannot drink out of a straw, and thus, cannot drink out of a sippy cup.  The only thing that saved us with the bottle was the Medela Special Needs Feeder, formerly called the Haberman nipple.  That nipple was a true life saver!  It was the only way Kennedy could drink out of a bottle because it didn't require a suction, just a sort of chew on the nipple.  So, we finally asked for a 2nd opinion about the surgery and her new craniofacial doctor scheduled the surgery right away. Yay! BTW, she does do her version of drinking out of a sippy cup now.  She just munches on the spout like she did her bottle.  This is great for us because that means no more expensive nipples, but not so great in that we have to replace sippy cups at least once or twice a week. :( Oh well!
Emotionally, this special needs thing has been quite a journey for me and my family. I don't know if I've mentioned it before, but I started going to a support group called Mended Hearts. It's been a great experience for me.  I've always thought about starting one in this area, but I'm so glad I've found one.  It is for parents of special needs children of all types. That first meeting really helped me to put things into perspective with Kennedy.  It helped me think about that no matter what I'm going through with Kennedy, it could always be worse. And I can't forget that. And at times this self-awareness has seemed like such a burden and a drain of mental energy.  Always having to be aware can become exhausting.  But, lately I have even been grateful for my self-awareness.  The problem comes in having to take care not to be contemptuous toward others who seem not to be so aware.  But, I have found that even in the difficult times, I am growing in ways I never could have imagined.  I really thought that this journey would make my heart bitter and cynical, but it has just increased in its tenderness and love for mankind.  I am so grateful for that. Grateful to be found worthy.