Life Continues

Rebekah continues to enjoy life. She plays with her sister, watches Dora, loves being read to, pretends with her makeup and doctor kits, dresses up, loves being tickled and hugged and kissed, enjoys school and being looked up to by her sister. She enjoys giving her sister hugs and kisses and tickles and helping her sister eat (whether that means giving Sarah some of her own food or telling Mommy that Sarah needs more or getting Sarah’s cup from the fridge and giving it to her).

If one of them needs a diaper change, they both have to come and they will walk hand in hand down the hall to the bedrooms. They will get a diaper out for each other and they’ve started wanting a wipe to wipe their hands when getting a diaper change. If one has a wipe, the other needs one. It can be really neat to see them getting along so well.

At other times, they fight and want the toy that the other one has and hit and push and generally be mean to the other. I guess that comes with the territory.

We are making some progress, but in other ways we seem to be taking steps backward. Rebekah’s medications are down to Claritin daily, Septra (an antibiotic that she gets because her immune system still isn’t where it needs to be) twice a day 3 days a week, and Tylenol when she needs it. We’ve dropped the Prilosec, Morphine and Zofran.

She can go days without throwing up and then all of a sudden she might get sick to her stomach. Lately, she hasn’t gotten much of her nutrition in during the day with the bolus feeds as we have been on the go so much. Yesterday, when she got a bolus feed, she threw up. Today, she didn’t want any bolus feeds, so we used the pump and she did ok with it. It feels like a huge step backward. Today we did get more nutrition in during the day than we have in a while (even if it was using the pump). When will it end?

She continues to eat some bites - some days more than others. We encourage her to eat, but don’t push.

We have approval from health insurance for Physical Therapy and Occupational Therapy sessions, so we’ll start those next week with OT and then PT the following week and then continue to alternate weeks. She has a long way to go with OT, PT and Speech.

I have held off on potty training the girls, since we will be away for a few days coming up. Tonight, however, during the girls’ bath, Rebekah was insistent that she needed out of the tub and onto the potty. I quickly put her seat onto the potty, her stool in front of the potty and her out of the tub and sitting down on the potty. She hadn’t been there long when I started hearing tinkles and she started saying all done and flushed and wanted up. Maybe I should be trying to train her now anyway…

I have been feeling under the weather – achy, nauseous, crabby. I’m hoping it will go away soon. Somehow, a Mommy’s job doesn’t stop when she doesn’t feel well.

Daddy has been dealing with computer issues, so it has not been a real fun week.

Please keep Oliver in your prayers. Also, Madeleine and her family could use some prayers, too.