Enjoying a nice sticky treat for being a good girl in the echo lab!

Yikes!

Where has time gone??! I can't believe we're halfway through May already. The boys are anxiously looking forward to the end of school - and so am I! I love having all of my littles at home with me. We're hoping for a nice, relaxing summer vacation. :)

Rebekah is doing great! I am really so excited to say that she is doing fantastic! Yes, she still has high pulmonary pressures; yes, she is still on oxygen; yes, she still has feeding issues and takes four medications a day, but in spite of it all, she is thriving.

Unfortunately, our goal of weaning Rebekah's overnight feeds to an end did just that - came to an end. :( If you remember, Rebekah was at a high on her overnight feeds of 40 mL's/hour just before Christmas. By March we had weaned down to only 20 mL's/hour and things went downhill from there. It seems that Rebekah needs a certain amount of calories overnight to have the energy to eat during the day. Within a couple of days of getting down to 20 mL's, Rebekah had virtually stopped eating orally and she lost almost half a pound in two weeks. Her GI doctor recommended we increase back up to 25 mL's/hour, and Rebekah did seem to do better, but not great. When we saw Donna last week, she wanted us to bump all the way back up to 35 mL's/hour. So frustrating!! But, we want Rebekah to get all of the calories she needs, and I have to say that she is proving to us (mostly to me) that she is thriving on the additional overnight calories. She has been hungrier during the day, she is more active, has more energy and has even been skipping naps on a few days. This is in direct contrast to about six weeks ago when Rebekah slept sometimes 15-16 hours a day and would hardly eat anything orally during the day. I guess the g-tube and overnight feeds are going to be our friends for a long while to come.

Tomorrow we see Dr. Lucas (cardiology) for Rebekah's monthly check-up. I'm hoping the echo continues to show Rebekah's pulmonary pressures trending downward. I'm really excited about Dr. Lucas seeing Rebekah tomorrow. I think he's going to be pleased with how well she's doing.

I'm sure there is much more to tell you, but my brain is tired and ready for bed. :) I know I need to update on how Rebekah is doing in therapy and some developmental milestones (and a few concerns), but it will have to wait for another post. Hopefully soon. ;)

Oh, and for those of you in Greenville (or those who want to travel), there is going to be a Cruise-in Benefit at the 'Lil Rebel Restaurant in Greer on June 18th at 5:30 to help with costs related to Rebekah's medical care. I have heard that there will be door prizes, vendor booths, raffles and of course, the cars! If you were at Rebekah's birthday party last June, it is the same location. If you need directions, please click the link on the right sidebar to email me. We would love to see all of our friends there!!

Nancy

Catching Up

So I'm finally back with an update...and pictures! :) To say that the last few weeks have been busy would be an understatement, but it is a good kind of busy. Drew is busy finishing the last couple of weeks of school (for those of you who don't know, he is back in school working on a Computer Science degree), I am busy trying to keep up with everyone's crazy schedules, the older boys are busy in their school work, and the younger boys are just plain busy!! And of course, Rebekah has an agenda all her own. :)

No, I didn't just randomly stick in a picture of my cabinet door.

If you look closely, you will see very tiny fingers peeping out of the top.

Those very tiny fingers belong to......

.....this very special little girl!

We were pleased to learn at Rebekah's most recent trip to the pediatrician that she does not have an ear infection! If you read the last post, you will remember that we had some concerns about another ear infection, but not this time! There is still fluid in Rebekah's ears, so we do have some concerns that we will be addressing at Rebekah's audiology appointment in a couple of months, but for now she is infection-free!

Rebekah loves to feed her baby dolls a bottle. :)

Rebekah's most recent cardiology visit was also encouraging. Dr. Lucas was very pleased with Rebekah's echo. It seems that the pressures in her pulmonary arteries have gone down again (remember, they can only estimate using echo, but this is a good sign!). Rebekah's heart function continues to look good also. Yippee!! We had some concerns prior to the appointment about an increase in Rebekah's sleeping, but it appears to be unrelated to her heart. Since then, she has gone back to a normal-for-her sleep routine. Dr. Lucas is targeting late summer or very early fall for the date for Rebekah's next heart catheterization. This will be an important catheterization because it will give us the exact measurement of the pulmonary pressures. We need the pressures to continue to drop between now and then! If the pressures are not down significantly from the last heart cath, then Rebekah will likely need another open heart surgery to re-open a portion of her VSD that was closed in November. We are praying that the pressures are down enough to buy her a little more time before her next surgery!!

Just being cute!

Between now and the end of the summer, we will continue seeing Dr. Lucas (cardiology) once a month. The plan is for Rebekah to grow, grow, grow this summer and to stay healthy and out of the hospital! Rebekah will continue OT at least until June when her therapist goes on maternity leave. We will re-evaluate at that point and determine if Rebekah still needs services.

Showing off a new hat!

Rebekah is making great progress in PT, and we are so very thankful for that! She is an amazing little fighter and has come so far since November. If you remember, she was just starting to pull up on things and stand the week before her heart surgery in November. Now she is walking everywhere! Rebekah's PT is helping Rebekah with stairs and stepping up and down from different platforms. While this is a necessary skill for Rebekah to learn, it is also helping to improve Rebekah's balance and stability while she is walking. The next thing on the schedule is jumping...I know that will be fun! :)

We have noticed in the last few weeks that Rebekah has been walking on the insides of her feet much of the time. Because we are super paranoid about Rebekah's development, it caught our attention. I mentioned it to her PT last week, and it turns out that Rebekah (and all of our boys, as we discovered!) is flat-footed. Not only that but her feet are actually rolling inward as she walks. So, she has earned yet another doctor - an orthotist! Rebekah will be having casts made of both feet so that she can have plastic orthotics made for her shoes. This will help to keep her feet in the correct position when she walks. Hopefully this will help prevent any future leg/foot/hip problems as she grows.

Please continue to keep Rebekah and our family in your prayers. We are so thankful for each of you and your ministry of prayer for our family.

Nancy

We are alive!

Just wanted to let you all know that we are alive and (mostly) well. :) We haven't dropped off the face of the earth yet, and we are still (sort-of) sane. It has just been a really busy few weeks. I promise I will get a good long post done this week, complete with new pictures of our adorable little munchkin.

In the meantime, we are off to the pediatrician this afternoon to have Rebekah's ears checked. She is poking and pulling at them again. It may be nothing at all, but I'd rather have them looked at. Combined with a little bit of a drop in appetite, and a whole lot of sleeping, it's worth getting checked...

Nancy

Warm sunny sunday

Praise the Lord Rebekah has improved and was able to come home today. She still needs a few more days of rest, but seems to be on the mend.

We are enjoying the warm weather and a afternoon with all of us home and together again.

Thanks for Praying for our family and situation.

D