So I haven’t done a real post in awhile. Things have been quite crazy but normal around here. There really hasn’t been that much to write about. We are enjoying every lazy second of Christmas break. We get two weeks without school and a two week therapy break for Kaitlyn and me. I LOVE all four of our therapist but therapy gets to be a lot, day after day, week after week. I’ve had pull-my-hair-out moments with the older boys and wish school would start soon, but they are short lived. We’ve been having many family game nights, sledding excursions (only one resulted in an ER visit, Brady’s fine), and great visits with family and friends. It’s been wonderful.
FYI: Never let your children sled down a large hill with a tree at the bottom, regardless of how small and off to the side that one tree is, regardless of how popular that hill is in your community, your child can still crash right into that tree at a very high speed and give you the most terrifying, five minutes of your life and land them in the ER on Christmas Eve. Don’t reason with “What are the chances,” in your head, even though it is extremely unlikely to happen. It does happen! Brady is fine (lots of bruising, he thought the x-ray was really cool).
Back to the update on Kaitlyn:
At 16 months old she weighs in at 21 lbs, she is in size 3 diapers (the same size as her 5 months old brother, they been in the same size for 2 months now).
Definitely gross motor! She has been almost walking for a month now. She takes 6-8 steps at a time consistently. We go next week to get her fitted for Sure Steps, ankle/foot orthotics. We are crossing our fingers that our insurance company cooperates, apparently Sure Steps aren’t official AFO’s and this could cause a problem. She has great stability (for having that extra chromosome) but I’m convinced these will help her to the next step with her walking. That low tone seems to interfere often. Many of you might remember that we were given a treadmill to assist Kaitlyn to get her walking sooner. In complete honesty we have used it very little. Walking has been such a natural progression for Kaitlyn, she would much rather push around one of her many walkers. Now speech and communication we could use some more help…
Verbal, non-verbal, signing, you name it, she’s quiet and stubborn. It took her awhile but she is making sounds, ma, ba, da, and la. She signed open for about a week, and I think she signed all done once. Our biggest goal right now is to teach her the importance of communication, how it works, and why it’s worth doing. I am so excited for the day we can imitate sounds back and forth, there will be tears of joy! Recently it was decided that we will start using PECS with her. We will have pictures and she will overtime hopefully begin to look and eventually point to what she wants/feels etc. In the mean time we will continue to work on signing and sounds with her. I know she has so many thoughts in that pretty little head of hers, I dream of the day that we can communicate more with each other.
We’ve been watching the fluid in Kaitlyn’s ears for some time now. Since it hasn’t cleared we have been referred to a Pediatric ENT to get tubes put in. Hopefully this will remove the muffling she most likely hears and improve her speech!
My poor little munchkin, she struggles going potty. Once again her low muscle tone comes into play and makes her intestinal track sluggish. After trying the normal remedies, prunes, prune juice, adding fiber, and cutting out the iron in her multivitamin, we finally found a doctor willing to get down to business. Kaitlyn takes 3 teaspoons of Miralax a day to keep her stools soft and regular. She can finally have a BM without screaming and her buns are beginning to heal. The Miralax was added in 1 teaspoon increments every 3 days until we found a dose that worked. The doctor said she might always need Miralax. Poor baby!
Other than all of that things are fine. She continues to make progress in all areas. She receives OT and our primary focus is getting her to use her thumb. She has amazing raking skills and sees no need to use the pincer grasp. Little stinker! She is kicking butt in gross motor, we are taking our PT time and actually focusing more on fine motor (OT). She also has a Developmental teacher. She is learning great. I constantly have to remind myself that we have to teach Kaitlyn how to do everything. Things just don’t occur to her. But once we take the time to teach her she catches on in no time!!! Her accomplishments are no small feat! She is also receiving nutritional/feeding therapy. She eats great. With only ½ of one tooth we are constantly looking for new foods to feed her, she wants texture but can’t chew much. The ONLY food she has refused to date is fruit loops; it was suggested to give her fruit loops to help her with her thumb, but no such luck. She rakes it in and spits it out, LOL. She still won’t drink from a cup or straw. We’ve made small progress and continue to work with a wide variety of cups. Her feeding therapy sessions are mostly spent working on oral motor, strengthening her mouth muscles to help with feeding, speech, and tongue protrusion. Slow but sure she continues to make progress in all areas!
Kaitlyn is a soul we can all learn from. She brings so much too so many people. It is important that we take the time to understand all she brings to our lives. God has great plans for our special little girl.