On the mend

Thank you all for praying for Miss Bekah! She is doing somewhat better after a few doses of antibiotics. As it turns out, Rebekah probably had an ear infection. I say probably because her doctor wasn't 100% sure that her ears were infected, but they did not look normal, either. Based on the appearance of her ears combined with her other symptoms, we are treating Rebekah for an ear infection. The big news, however, is that her lungs are clear. That was very exciting to hear!

Rebekah's weight check this week was okay. Just okay. She did not gain even a fraction of an ounce, but on the other hand, she did not lose any weight, either. So we went back to the drawing board! As some of you may know, our fourth son, Caleb, had multiple food allergies that he eventually outgrew around the age of 15 months. One of those allergies was a dairy protein allergy. It seems likely that Rebekah shares this allergy with her brother. So, I am back on a dairy-free diet to see if it makes any difference in Rebekah. With Caleb, we knew right away that he had eaten something (or I had eaten something while he was nursing) that he was allergic to because he would throw up shortly after eating it. Because of the Nissen procedure, Rebekah does not throw up (although she does gag), so we are learning that if she is exposed to an allergen, it all comes out in her diaper. We are also including a higher calorie formula in her diet to increase the calories that she receives from breast milk. Our next weight check is next Wednesday, so please pray that we see some progress then!

We were also able to visit the lab and try to have Rebekah's blood drawn again. This time, our favorite technician, Nancy, was working and she was able to get all of the blood needed for all five tests on the first try. Praise the Lord! She was very upset that Rebekah had to go through two days of attempts to get blood. I told Nancy that she wasn't allowed any more sick days! Seriously, we will not even schedule a blood draw if she is not there. It is worth a little scheduling inconvenience to get it done the first time.

The troops are all up, so I have to run. Thank you all again for your prayers for our family and for Rebekah!

Nancy

Prayers Needed!

Rebekah woke in the middle of the night very congested and not breathing well. She had a temperature around 100 at 3:00, so we gave her some Tylenol. She did nurse a little and then fell asleep again and slept through what was left of the night. I will be making a call to her doctor this morning to see if we need an appointment today. Since Friday night Rebekah has been tugging at and messing with her left ear, so it is quite possible that she has an ear infection. Right now I am most concerned about her breathing/congestion. Because Rebekah's right lung is not functioning, it is imperative that we keep it free from infections. Please pray that we will get this little cold cleared up quickly!

Also, we have another weight check this morning. Rebekah has really been eating well in the last 5-6 days, so I am hoping to see at least a little progress! Pray for wisdom for us all as we discuss Rebekah's feeding plan for the next week.

And last, we were never able to get Rebekah's lab work done last week. She ended up with nine attempts total (4 in the arms, 1 in the wrist, 2 in the hands, 1 in the foot and 1 in the scalp) and the technicians were only able to get 1/2cc of blood. It was enough to run one test (a CBC), but Dr. Johnson ordered five different tests. The CBC looked good, so we were pleased about that! Today we have to attempt drawing blood again to complete the rest of the lab work. There is a technician named Nancy that was successful in drawing Rebekah's blood a couple of months ago, and she was out sick last week. We are praying that she will be back today and that she will be successful!

Thank you for praying for our sweet girl!

Nancy

Immunology

Rebekah and I met with her Infectious Disease doctor this morning, and we had a really good appointment with him. Dr. Johnson was pleased that Rebekah has not been sick so far, and we are too! Rebekah's tonsils look good and are a good size for her. Apparently, it is not uncommon for kids with DiGeorge to have tonsils that are too large and need to be removed. Rebekah's ears also look good with no signs of any infections, either now or in the past.

We won't have any information about Rebekah's immune system until we have the results of her labwork. And, unfortunately, the lab technicians were not able to draw blood today because they couldn't get a vein that would cooperate. After several tries, the technicians decided to give Rebekah a break and try again tomorrow. When we finally do get the labwork done, it will be a couple of weeks before we get the results back. Assuming there are no major issues with the labwork, we will not have to return to see Dr. Johnson for two months. If there are some problems that require immediate attention, his office will reschedule us an earlier appointment.

Tomorrow we have another weight check and another attempt at labwork. Hopefully tomorrow's attempt goes better than today did!

Nancy

Happy Five Months!

Rebekah is officially five months old today! Time seems to be flying by - it really doesn't feel like we headed to Charleston to begin this adventure five months ago.

As you know if you have been following the blog, Rebekah is still struggling to gain weight. This has been her biggest challenge so far. We have been seeing Rebekah's dietitian weekly for weight checks and adjustments to Rebekah's feeding plan. The frustrating thing is that we haven't seemed to be able to find the "magic" combination of feeding times and amounts to allow Rebekah to gain weight. In the last few days, Rebekah seems to be showing an intolerance to the formula that we are using to fortify her milk, so we are back to the drawing board to figure that out.

Developmentally, Rebekah is really making some good progress! Of course she is still not where the boys were at five months old, but we are really pleased to see how far she has come in the last month or so. Rebekah is holding her head up on her own almost all of the time now. She does tire easily, so we don't push her for long periods of time, but she is getting stronger all the time. We are currently working on teaching Rebekah to roll over. She is getting to be a pro if we help her by rolling her onto her side first. Then she can get right to her tummy or her back on her own. Rebekah is also working hard at playing with her toys - grasping toys in both hands, bringing toys to her mouth, and turning her head both directions to follow a toy or some other object. Our therapists have been great in helping us learn how to work with Rebekah on her developmental skills.

Mommy loves Rebekah's dimples!

Other than therapy this week, Rebekah has her weight check and an appointment with the infectious disease doctor. I'm not sure exactly what they will be looking for or testing, but they will be checking her immune system. I think it will involve labwork, so please pray that it will go smoothly!

We will update later in the week after Rebekah's doctor's appointments and let everyone know how things are going.

Nancy

Charleston

What a day! It was a long day, but Rebekah has her Mic-key button now. It was not without a little trouble, though. Her old tube seemed to be perfectly happy right where it was and had no desire to come out, so it was a little painful for Rebekah. The new button is in now, and it will be much nicer for Rebekah. After a couple of doses of Tylenol and some sleep on the way home, Rebekah seems to be feeling a little better.

Rebekah has occupational therapy in the morning, so we're off for hopefully a good night's sleep!

Nancy