Someone is having a birthday!

Believe it or not, Rebekah's first birthday is right around the corner!

In lieu of gifts, we are asking that donations be made to either of the following two organizations. The first is the PCICU at MUSC, where Rebekah spent time following her birth and surgeries. Rebekah will spend more time there through the years as she has further surgeries. The PCICU is an incredible place full of dedicated doctors and nurses. We love the PCICU!

The second organization is Annabelle Baskets. Baby Annabelle was born with Hypoplastic Left Heart Syndrome and lived just two short months before returning home to Heaven. Her sweet mom, Rebecca, wanted a way to carry on Annabelle's legacy and give hope to other parents of heart babies. The baskets contain a receiving blanket, an embroidered burp cloth, a small stuffed animal, a bow for girls or a hat for boys, and a pair of warm, fuzzy socks. Rebekah was a recipient of an Annabelle Basket, and it meant so much to us!

We would sincerely love to see each of you at Rebekah's birthday party. Please be sure to RSVP by June 12 as we need to provide the restaurant with a total number of attendees.

Nancy

This and That

Hello to all! We are alive and well, contrary to what you may think! :) It is safe to assume that no news is good news and we are just keeping busy around here.

In the last couple of weeks, Rebekah has started both physical therapy and speech therapy. In speech/oral motor skills, Rebekah has mild to moderate delays. The therapist is working with Rebekah to drink from a cup (sippy cup and straw), eat a wider variety of foods with different thicknesses and textures, and add more words to her vocabulary. Right now, Rebekah says "mama" and "dada" and the therapist would like to see her add 3 to 5 new words in the next few months. We are working on it! :)

The Gecko stander with all the bells and whistles!

In physical therapy, Rebekah has significant delays in her motor skills development. The physical therapist, DeeAnn, completed the Peabody Gross Motor Skills Test, and Rebekah scored at a 7 month level for reflexes, a 5 month level in the stationary position and a 6 month level for locomotion. Rebekah will be 11 months old this week, so obviously, we have some work to do! The first thing that was done was to order Rebekah a stander. The specific one is the Gecko Upright Stander. This will allow Rebekah to practice standing on her own. Right now she is not bearing any weight on her feet for more than a few seconds at a time. We will be working up to standing 3 times a day for 45 minutes each time. The stander will have a tray for toys or finger foods. It has supports for Rebekah's waist, hips and knees to keep her in the correct position for standing. It also has wheels on the bottom so it will be easy to maneuver Rebekah around the house. The biggest reason for the stander and the urgency for using it is because Rebekah's hips may not form properly if she does not begin to bear weight on her legs. The stander should arrive sometime close to her birthday.

I'm being a cutie!

Rebekah also had a hearing evaluation in the last couple of weeks. Rebekah was such a good girl and sat very still while the audiologist completed her tests. Unfortunately, Rebekah did not pass the hearing evaluation, so we will need to repeat it in another few weeks. Preliminary results show that Rebekah has middle ear dysfunction and/or hearing loss greater than slight for each ear at normal frequencies. The audiologist said that it was possible that Rebekah had some fluid in her ears, but our pediatrician did not think that was the case. Rebekah must fail three consecutive hearing evaluations at six weeks apart in order to be diagnosed with hearing loss. Rebekah does seem to hear well most of the time, so we have not been overly concerned about her hearing. We will see what the next evaluations bring before becoming too concerned with the results at this point.

Working on eating finger foods!

Rebekah is doing well at trying new foods. We are concentrating more on thickening the foods Rebekah already eats, rather than introduce new foods with a puree consistency. Rebekah's favorite combination right now is mashed avocado mixed with mashed banana. Rebekah has also begun to drink a little bit of milk from a sippy cup, which is a huge step for her! We have struggled with getting Rebekah to drink liquids of any kind. She drinks watered-down grape juice the best, but will tolerate water. She does not like formula in any way - cup or bottle, warm or cold, so we are trying to move away from that during the daytime. Rebekah still gets her formula overnight through her g-tube and probably will for quite a while until we can work her up to enough calories by mouth.

Rebekah playing with Noah's ark animals and Aaron.

Last weekend, we made a quick trip up to North Carolina to see family. It was a very busy, but fun weekend, and we enjoyed getting to see everyone. We were also able to take Rebekah to church at Beacon Baptist, where many people love and pray for Rebekah regularly. It was wonderful to see so many friends and introduce Rebekah to them all.

With the warm temperatures outside, we have been spending more and more time outside playing. Rebekah has also been enjoying the time outside and loves watching her brothers play. On Saturday, we spent several hours outside playing soccer and baseball while Rebekah played in her exersaucer. She enjoyed our afternoon treat of Fudgesicles as well!

Rebekah ate more of Mommy's fudgesicle than Mommy did!

In other areas, Rebekah is doing great! Her oxygen saturations are remaining stable, and we are very thankful for that. Rebekah has also seemed to have a little more energy to play lately. She loves to play with her brothers, and Aaron especially seems to enjoy playing with her. Rebekah also loves music and will clap or bounce when she hears it.

Watch me playing!

Rebekah is also becoming more interactive. She regularly claps her hands when she feels that she has done something exciting. She also waves on occasion and is beginning to play peek-a-boo. Oh, and just this week, I found another tooth! Rebekah now has two teeth on the bottom, although she does not like to show them off. :)

Watch me play peek-a-boo!

This week is going to be busy! In addition to our regular therapies, Rebekah has an "official" weight check, a pulmonology appointment, pictures, and a haircut if I can get an appointment for her. I have no plans to cut it short, but it's time to have her hair shaped and evened out a bit. We will be sure to get some pictures of that! The boys have only this week and three half days next week before school is out for the summer, and we can't wait! I will be so happy to have all my kids at home for the summer!

Nancy

Catching Up

Well, it has been a while! I'm not quite sure where the time has gone, but all of a sudden, it's two weeks later and I'm just now finding time to update. We have had a lot going on in the last couple of weeks, so I'll try to fill you all in.

First of all, in very exciting news, Rebekah's cardiologists, surgeons, and all other parties involved have decided that Rebekah's heart surgery will be postponed indefinitely! Because the collateral arteries have not shown any growth, and barring a miracle, the doctors are not expecting them to grow, the doctors want to wait as long as possible before repairing her heart. Once they repair Rebekah's heart, she will be committed to a single-lung physiology for the rest of her life. Therefore, surgery will not be done until it is absolutely necessary. Rebekah's cardiologist here believes that it will be next summer before we begin talking about heart surgery. Of course, if Rebekah begins to grow faster than expected, or her band becomes too tight, the surgery will be sooner, but that is their best projection at this point. We are so excited about that! We will be able to enjoy the summer and possibly next school year in a somewhat "normal" fashion. Rebekah will be older, bigger (hopefully!) and farther in her development by the time she has surgery, so it should be easier on her. And, if the Lord sees fit to allow her collateral arteries to grow in the meantime, we will be even more blessed!

One of Rebekah's first studio portraits. She did a great job!

Rebekah also had a vision exam in the last week. The opthamologist was very thorough, and I felt very comfortable with his exam. He ruled out a few potential problems, thankfully. One thing he did mention is that he feels Rebekah has ptosis (pronounced toe-sis), which is a drooping, or lowering, of the eyelid in her right eye. For right now, it does not seem to affect Rebekah's vision, but we will be having follow-up appointments every six months for re-evaluation. If the ptosis worsens, there are exercises, therapies, patches, glasses and/or surgery to correct the problem.

Aaron and Rebekah - he loves his baby sister!

On the eating and feeding front, slow and steady wins the race (we hope!). Rebekah seems to enjoy eating baby food and is broadening her choices. Rebekah is now eating carrots, sweet potatoes, green peas, green beans, squash and avocados. She also enjoys bananas, pears, applesauce, cherries and some assorted meat and veggie meals. So far, she is eating Stage 2 pureed foods, or foods that I puree or mash thoroughly. In therapy, we are working toward drinking from a sippy cup and a straw, and adding more texture to Rebekah's pureed food. We are also working toward teaching Rebekah to chew, or mash, small foods like cheerios and Gerber puffs. We are just in the beginning stages of these goals, but we are getting lots of practice!

Rebekah enjoys playing with her toys.

We are excited to announce that Miss Rebekah now has her first tooth! After much chewing, gnawing and drooling (and a bit of fussiness), Rebekah's bottom left tooth finally poked through on Monday. It seems that the bottom right tooth will be joining it soon, but hasn't arrived yet.

The boys pause in their fun to pose with Rebekah. They were (gently) pushing her around the living room in our little blue cooler.

In matters of therapy, we are hopefully going to be starting both speech and physical therapy this week or next week at the latest. We will be returning to The Care Center where Caleb received Occupation Therapy for his sensory and eating difficulties last year. We loved the staff there and feel that they truly care for each patient. We have had a difficult time finding the level of care anywhere else that compares to what we experienced at The Care Center. The drawback is that it is almost an hour drive one way, but we feel that the drive is well worth it for the care. We will be working toward getting both therapies scheduled back-to-back so that we only make the trip once a week. I'm very excited about getting these therapies started!

I love my toys!

I think that about wraps up the latest news from here. We are looking forward to the end of school and all the fun that summer will bring!

Our beautiful little girl.

Nancy

A Quick Note

Just wanted to let everyone know that Rebekah is doing well! The doctor was able to change her g-tube yesterday morning without any problems. Now that the new tube is in, Rebekah no longer seems to be in any pain when we use it.

We have had a fun, if busy, Saturday. I will try to post a longer update tomorrow, including the promised therapy updates and pictures!

Have a blessed Sunday!

Nancy

Ups and Downs

It seems like with Rebekah whenever we have an up, we also have a down. That's how this week has been!

On Tuesday, Rebekah met with her surgeon about changing her g-tube. He felt that she had not grown enough to warrant a change. Unless there is a defect with a tube, Rebekah's Medicaid will only allow 4 replacements in a calendar year, so replacing a g-tube prematurely could cause problems with getting new ones. So, we are (were) going to wait until Rebekah grows a few more pounds before changing her tube.

The down is that last night while connecting Rebekah's tube for her night time feeds, Drew noticed some redness around the tube site again. He was looking more closely at it, thinking that maybe her tract infection had returned (and maybe it has, we don't really know yet) when Rebekah kicked the connection tubing and pulled her g-tube part of the way out of her stomach. After working with the tube a bit, we were finally able to get the tube completely back into her stomach, but it was apparent that she was in a good deal of pain. We immediately called the surgeon's office and, thankfully, were able to speak with a surgeon who has seen Rebekah in the office before. He walked us through testing the balloon and we realized that the balloon is leaking. Whether it had a leak before and we just realized it when Rebekah kicked it out, or whether the force of her kick was enough pressure to cause the leak, we will never know. Either way, we were not able to use her g-tube for her feeds overnight, and she did great! She slept all the way through the night, which was a huge treat for me!! It has been months since I have not had to get up and refill the bag for her overnight feeds.

This morning we will be seeing the surgeon as soon as their office opens. The will be replacing Rebekah's tube, most likely with the size that she currently has. Putting in a tube that is too big can cause leaking and rubbing that can lead to a lot of irritation and skin breakdown. With Rebekah's skin already being so sensitive, that would not be a good thing!

There were some ups and downs in the world of therapy this week, too, but I don't have enough time to get started on that post right now. The bottom line is that we will be getting the therapy Rebekah needs, even when it means driving almost an hour one way to get it. I will definitely put all the details in another post as soon as I can.

Please pray for Rebekah this morning that she will not be in any pain when the surgeons change her g-tube. Also pray that there are no additional problems with the tract (infection or damage from the tube when she kicked it). And keep praying that her collateral arteries will grow! :)

Nancy