Come meet a lovely family that is kicking off their web-based business. They offer products to promote awareness about Down syndrome such as car decals, clothing and jewelry. Come support them and show the world you love a person that has Down syndrome as well!

http://www.downsyndromefootprint.org/

Meet Kathy- Our awesome OT

We just finished up with PT and OT for the day. And Kathy our dear OT will probably be sorry she mentioned to me that another family’s blog had her photo up- Sorry Kathy :).  But here’s the thing- the services we have been receiving from Pediatrics Unlimited are top-knotch. Our experience getting the Quail the services she needs to be all she can be has been a good example of the need for strong advocacy and the importance of trusting your instinct. Breastfeeding is important to me and more importantly it is an extremely important exercise to help the Quail strengthen her oral-motor muscles in order to assist in good speech clarity and as well as assist in minimizing future feeding issues. I’m aware of this from my own research. When we left the hospital after her birth the lactation consultant told me be sure to get our pediatrician to refer us to either a speech/language therapist or an occupational therapist because with her hypotonia or muscle weakness she was having great difficulty breastfeeding. I knew it wasn’t going to be easy. I had come home with a nursing plan after the birth of Zuzu and had spent more time in consult with the LC then with the pediatrician those first few months. Fortunately for all of us Zuzu became a comfort nurser which enabled her to continue to nurse during my pregnancy with the Quail when all the milk dried up. This in turn has been the greatest gift she could give her little sister. Because she has ensures me a grand milk supply I am able at 7 months post-partum to continue to pump daily and provide breast milk for the Quail while she continues to learn to nurse. This milk will help her through this vicious cold and flu season we are about to enter as well as giving her the opportunity to boost her IQ. We are all so grateful for this symbiotic relationship amongst us that Mother Nature has bestowed.

But I digress, after the Quail’s birth I started in on calling the LC that had been so helpful with Zuzu. She didn’t have much to offer- and let me tell you generally speaking the LC’s at this hospital are top-notch. But as I’m finding out- most people really don’t know much about working on feeding issues. They continued to say we should find a SLP or OT. After we got our Babynet (county early-intervention provider) services set up we got a referral made ton an SLP. Her goal was to get the Quail eating without taxing her and to ensure adequate nutrition and growth- especially considering her ventricular septal defect and the fact that the cardiologist informed us that the deciding factor between open heart surgery or not will be her growth- if she can maintain between the 30-70% on the Down syndrome Growth Charts then surgery would not be necessary. We spent the next 3 months going regularly to speech therapy and having the Quail hooked up to a monitor to check her oxygen saturation while she drank her bottle. I asked repeatedly what else we could do to work on breastfeeding. At the last appointment I finally asked directly for the SLP to give us a list of exercises to develop the breastfeeding skills she needed. She told me that there were no exercises that would teach that. We decided to hold off on therapy at that point since there wasn’t any progress being made we could witness. I started asking around to other families in the area trying to find another family that had experienced difficulties breastfeeding in the beginning but had gone on to have a successful nursing experience and find out what they had done. Another family in the area passed on Kathy Maxwell and Pediatrics Unlimited’s phone number and said to specifically ask for her. It took me a few weeks to work up the nerve, you know; you really do believe what people tell you when they have initials behind their name. When I finally called and explained our situation and asked if that was her opinion as well- that there are no exercises to teach a baby to breastfeed who isn’t doing it naturally; she said no- that is what she makes her living doing and while it would be difficult to start a 5 month old baby out, if we work hard and do the weekly exercises we could give it a try and she was willing. We went in the next week and have been going weekly ever since. If you go back and read The Quail updates here you will learn about the progress we have made. It is definitely two steps forward and one step back, it isn’t easy- but The Quail is making so much progress and the closeness of our relationship (when she isn’t screaming at me to stop trying to make her breastfeed) is lovely. Of course the lemons to lemonade version of her screaming and fighting me on breastfeeding is two-fold- we’ve had the opportunity to witness the blossoming of an incredible will in her and hey- it strengthen’s her neck and arm muscles as she continually pushes off 🙂

So the lesson in all of this is this- trust your instinct- if you think your child is capable of something then don’t let someone tell you different- find that partner that can help you and your child out. Not every therapist will be a match with every child- and many have very different styles and training. And if you live in the Upstate of South Carolina and are in need of someone with excellent skills with teaching a baby to eat- call Kathy.

The Quail got her cereal “training” today and she is so very excited- and with Kathy’s expertise we are confident she will grow into the little foodie lifestyle that the rest of her family embraces.

PS- And Kathy if you are reading this- we really do appreciate you- you inspire us and hearten us. Thank you so very much-