Rumor

Rumor has it that Miss Rebekah will be going home tomorrow....just in time for Christmas! She has been showing steady improvement, and the doctors feel that she is well enough to go.

We will be feeding Rebekah through her g-tube during the night when we are home. It is an attempt to decrease the work her heart is currently doing while eating. So at least half of her daily intake will occur overnight. That will take a little getting used to for all of us as Rebekah had previously been sleeping through the night. Actually, she will probably still sleep through the night. I will be the one setting an alarm to add more formula to the pump. It will be good for Rebekah, though, to have the extra calories without working for them.

Rebekah also received her first Synagis shot last night. She will receive this series of shots monthly for the next several months. Synagis is used as a protection against the RSV virus, which could be fatal for Rebekah. RSV is a normal cold for most adults and children over the age of 2, but for premature babies, or those with other heart and lung problems, RSV would cause a severe risk from complications and even death.

After being discharged from the hospital, Rebekah will have several appointments in the next couple of weeks. She will be seeing her cardiologist for a follow-up visit to make sure her heart and lungs are still working well. We will be having an appointment with her gastroenterologist and possibly another night in the hospital for some additional tests if they feel that is necessary. Rebekah has been struggling with GI issues (diarrhea and lack of weight gain) off and on for the last couple of months, and we all feel that it is time to do some further testing to see what might be going on. We will be back to our dietitian for a weight check again, and we will be seeing the pediatric surgeon's office here to have a new type of g-tube placed. We have had several problems with the Mic-key button that Rebekah has and she is currently using her third one in about seven weeks. Mic-key buttons should last between three and four months, but Rebekah's are only lasting about two weeks before they develop a leak and deflate. I had a consult with a resident from the pediatric surgeon's office on Monday, and they recommended a different type of g-tube that does not have a balloon on the end. For some reason, they have exactly the same type of problem that Rebekah has had with most of the babies that have the Mic-key button.

Also in January, we have follow-up appointments with Rebekah's pediatrician, endocrinologist, infectious disease doctor and geneticist. Sometime in the next few months, Rebekah will be referred to an opthamologist and an ENT or audiologist to have her vision and hearing checked. I think January will be a busy month!

Please continue to pray that Rebekah rebounds from this illness and that she and her brothers (and parents!) will be able to stay well this winter. The three older boys all came down with strep throat while we were in the hospital, so thankfully Rebekah was not around them. They have been on antibiotics and are hopefully on the mend now.

We are looking forward to spending Rebekah's first Christmas at home!!

Nancy

Dedication Day!

Rebekah has had a busy week and a half! Although she still has a little bit of a runny nose, her cold seems to be pretty much gone. Now if we could get her brothers' colds cleared up, we may be back to normal! :)

Rebekah dressed up for her dedication.

Last week Sunday was Rebekah's dedication at church. She was a very good girl and slept through most of it. Pastor Chuck did a great job, as always, and Rebekah was very still and quiet as he prayed for her.

Listening to Pastor Chuck talk about Rebekah's special verses.

Rebekah also met with her geneticist, Dr. Rogers, last week. Most of what he said we had been told before, but he did explain one thing that we hadn't been told before. Rebekah has a short palate which could mean some speech problems in a few years when she starts talking. The good news is that any problems should be correctable either with speech therapy or surgery or both.

So cute!!

Rebekah has qualified for several therapies which she receives at home. We are working hard to catch her developmental milestones up to where they should be for an almost four month old. She is now grasping on to toys or other small objects, holding her head up a little better and trying to roll over. We work hard at playing with Rebekah and so do her brothers! :)

Nancy