Well, we made it through the first week of feeding therapy at Mary Free Bed. Only 11 weeks to go! I am excited about the progress Caedyn will make over these next three months. We have a wonderful therapist, Linda. She is patient, kind and demands results. Everything a therapist should be!!! We meet bi-weekly on Monday mornings and Wednesday afternoons. MFB is not flexible at all with my scheduling requests, this will have to do for now. Hopefully, a Friday time slot will open up to occasionally allow Jeff to observe and participate in her therapy hour.
We began Monday with some food play and observations. Caedyn sits in a highchair and is given some yogurt, which thankfully, she enjoys. She is encouraged to play in it with her hands, toys and our newest therapy tool, a Nuk brush. This will help her to not be scared of food, which she so often is, and hopefully teach her to enjoy it like most toddlers her age. The textures of toys vary and Linda places each one in the yogurt and into her mouth. This in time will also strengthen the weak muscles she currently isn't using to chew. It also gives Linda feedback watching her swallow and move her tongue around. It is quite amazing what evaluations are being made throughout the hour. So many things we take for granted as part of our digestion, Caedyn has a hard time with. It has been determined all of this is in relation to her low muscle tone, which we are no stranger to hearing.
"Sure Linda, anything you say.."
Giving Linda the whine we know so well.
Today, Linda taught me a couple daily exercises that are quite hard for Caedyn and will take some time for this mommy to learn. Linda is encouraging yet firm in her teaching skills and assures me that I will probably do the techniques wrong for the first few weeks! However, with time and practice, I am sure both Caedyn and I will master them. With Jeff being out of town most of the week, the majority of this responsibility will fall on me and of course, all the grandmas who care for her each day. I am grateful that each one is so willing to be part of her learning experience.
Linda also suggested getting Caedyn involved in more physical therapy once a week at MFB. Currently, she only gets PT/OT every 3-4 weeks with Early On. Because she doesn't have the diagnosis of CP on paper till her full evaluation for the condition in February 2011, the state will not allow any more PT than monthly. It is quite unfortunate, but I am thankful to have health insurance that hopefully will pick up the cost until we can get the assistance we need.
Througout this process we also meet with a nurse once a month for height and weight measurement. Today Caedyn was 25# 3.7 oz and 32.25 inches long. That puts her at about the 75% percentile. I cannot tell you how happy this makes me! She has gained about a pound in the last month since her well child check, so I am confident she is getting the nutrition she needs from me as well as the little amount of food she eats regularly. The end goal is to wean her off the bottle/breast and onto a cup and getting her to eat any and everything in terms of table food.While this is bittersweet for me, I look forward to having the flexibility to come and go without hauling around my favorite black bag. I will however, have a hard time with letting go of the remarkable bound we share through nursing. :(
We have no change in diet as of yet (I am so thankful for this) except to make sure that all her food is pureed and in very small pieces. We eventually will end up thickening her liquids with something they call Honey Nectar but I don't forsee this being a real big deal. For now, I am so very thankful that she is able to swallow and eating at all!
I will try to keep up with blogging her therapy sessions as she progresses. For now, please continue to pray that we remain seizure free to avoid any set backs, that therapy will ease into our already hectic life routine and that Caedyn contines to blossom into the toddler I know she can become. Oh, pray for patience for me as well. While this too shall pass, it is hard to keep your cool when you never get a chance to just sit back and relax! As always, thank you for your continued prayers, support and kind words of encouragement. It means so much!
Giving Linda the whine we know so well.