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

Playing

Rebekah has been doing so much better at sitting up in the last few days. I have been able to leave her for short (a minute or two) periods of time while she is sitting and playing.

Looking cute!

I'm hoping that I wasn't premature in last night's post when I said everyone was doing well. For some reason, Rebekah needed oxygen overnight last night. She did well on her own today and so far has been doing well tonight. Hopefully it was just an isolated event and is not a sign of anything else to come!

Playing with my shapes

And now, just for Beth, Rebekah demonstrates banging two toys together! This has been a running joke for several weeks now. One of Rebekah's goals is to bang two toys together, and she has done it for quite a while. It seems, though, that she has an aversion to doing it when Beth is here for OT. I finally caught it on video today! :)

We're hoping for a nice quiet week from here on out. Please pray that Rebekah's g-tube change goes smoothly and without complications tomorrow. It should be just a quick, in-office procedure, and that is what we are praying for. Hope you all have a great night!

Nancy

A Great Week!

This is another post to let you know that there isn't much to update on! Rebekah had a really good week, and we are so thankful that the rest of the family also seems to be over all of the sickness we have had lately.

Rebekah had her nine-month well visit on Thursday, and it was a relatively quick one! There were no major problems or issues to discuss, which is just fine with me. The only thing we really had to talk about was scheduling both a hearing and vision evaluation sometime in the next couple of months. DiGeorge Syndrome can cause problems with both vision and hearing, so we are making sure that if there are any problems we can correct them quickly.

This week should also be a fairly quiet week. On Tuesday, Rebekah will see the pediatric surgeon here in Greenville to have her g-tube changed to a little larger one. It should be a five-minute procedure done in the office. The reason for the change is that Rebekah has grown some from when she had the last g-tube inserted in January, and this one is just snug enough that it is rubbing and causing some irritation around the g-tube. It should be a little more comfortable for Rebekah once we get it changed.

On Wednesday, Rebekah will meet with a new speech therapist for an evaluation. If you remember, Rebekah was receiving speech therapy at home in the fall, but we discontinued the therapy because the therapist we had was not trained to work with infants. I felt like the therapy sessions were wasting our time and the therapist's time as well. Our Early Interventionist has not been able to find any speech therapist trained to work with Rebekah who will come to the house, so we will go to them! During Wednesday's evaluation the therapist will mainly be watching Rebekah's mouth and tongue as she eats and drinks. That is a good indicator of how her oral motor skills are developing in relation to her age and other developmental skills. We already know from Rebekah's OT (Hi, Beth!) that Rebekah is not moving her tongue from side to side like she needs to be in order to move food around in her mouth to chew it. Right now, anything that goes into Rebekah's mouth gets pushed straight to the back of her mouth, and she either swallows it (pureed foods) or chokes on it (anything solid). We'll see what the speech therapists have to say on Wednesday!

That about wraps up this update. Hope you all have a great week!

Nancy