MFB Therapy

I was very unsure of what today's therapy would bring since Jordan has gotten such a low amount of fluids for the past several days (less than 10oz per day). Surprisingly she actually gained a little weight - she was up to 14lb 8 oz. There was quite a bit of concern with the possibility of dehydration and lack of nutrition.

Ellen tried a new (but actually old) sippy cup with honey thick Pediasure. Jordan sounded very wet and gurgley. She thickened it to a pudding consistency and she did okay with it when given just a sip at a time.

We then worked on a bottle. Ellen used a Dr. Brown's bottle with a Y-cut nipple and pudding thick Pediasure. Again, we only let Jordan take one sip at a time. She actually did quite well with it and didn't sound too wet. After she started refusing the bottle we tried spoon feeding her and she took a few spoonfuls before she didn't want anymore. Over a period of about 30 minutes she took almost 3 oz!

The nutritionist and dietitian agreed that Jordan needs to stick to a diet of Pediasure thickened to the appropriate consistency with pudding, yogurt, and cereal. I will drop her fruit and veggie purees for now so that we ensure she is getting the most possible nutrition, calories, and liquids in as little amount of food as possible.

They feel that Jordan has started on a downward spiral - she is getting less nutrition and her energy level is weakening and so she has less energy to put towards eating, thus giving her less nutrition. Her therapy has now been increased to 2x/wk and they will monitor her closely. They want to get her in to see the specialist before July 3, but she is out of town for 2 weeks. If necessary, they may have her see a different specialist in the same program at DeVos Children's Hospital.

As I was leaving today I asked Ellen about the feeding tube and she said she was pretty confident Jordan would need one to get her the nutrition she needs. Currently her therapy consists of finding the safest way to get her as much nutrition as possible and they can't even work with her on building the skills she needs to learn.

The past few days have been quite stressful and somewhat overwhelming for me. I am constantly concerned about what Jordan is consuming and how much and often she has wet diapers. I know that Jordan is being monitored weekly but a day seems like forever when she's not drinking and not peeing! Please pray that Jordan receives the nutrition she needs to stay healthy and for my stress level through all of this. I don't feel like I can keep up with all of the day-to-day work of being a wife and mom to 3 kids. Also pray for Mak and Conner in all of this - I don't want them to feel unimportant because of all we are doing for and with Jordan.

Thank you all for supporting us through this journey!