Whoa, We're Halfway There!

September 17, 2016

Whoa, We're Halfway There!

This week brought Abby's six month birthday! Time flies and we are realizing every day just how blessed we are. Abby's health continues to be in good shape and we love her more every day.

Last Friday we made a trip to the Spina Bifida Clinic at Primary's. Before heading over to clinic, we took Abby in for another renal ultrasound to check up on her kidneys. She was pretty calm for this and we were happy to have recognized the ultrasound technician. He did an ultrasound for us while we were still in the hospital and we had commented that Abby had old man, grandpa hair (bald on top, hair around the bottom edge). Coincidentally, the technician had a similar hairdo... Anyway, it was fun to see him again.

Looking at dad during the ultrasound.

She was pretty content just to lay down and watch our technician.

Once at the clinic, Abby weighed in at 17.4 lbs. The nurse was happy with how she was doing, and gave us some tips if she became constipated. Because of the nerves damaged because of spina bifida, there can be a lot of bowel and urological issues that accompany the condition. When these kids become constipated, it can be a bigger struggle and pain for them. So anyway, we got some potential helps for that. She has been fine up until that point, so we weren't terribly concerned.

Dr. Kestle, our neurosurgeon came and examined Abby next. When she had her shunt MRI a few months ago, the radiologist noticed that the left side of her brain wasn't draining as effectively as it could be. We were told to not worry too much about it (HA HA), and that we would hear more at clinic. Because her behavior hadn't changed at all (she still eats like a champ, sleeps normally, and isn't more irritable than any other baby), we really weren't too concerned. Dr. Kestle felt her soft spot and was really pleased with how she looked. He has zero concerns and now we don't either. Yay! A huge blessing as we know that these shunts can be fairly temperamental and have a pretty high rate of failure. When she's about one year old we'll do another full MRI to look at her spine and we'll check her shunt again at that point.

This is how she sat for a while. It was a long morning.

Next came urology. It was a different specialist than the one that saw Abby last time. He told us that based on her last bladder test (done right before our last clinic appointment), he recommended that Abby be put on Ditropan and we start cathing her multiple times each day. Um, okay? So I brought up the fact that during our last visit they looked at the same test and said we need not worry about beginning any of that. He then left to check with their attending urologist and the clinic director. After discussing her case with them, he came back with the positive news again that we don't need to start those measures with her yet. He was using different requirements than they were, so she's still in the clear. Glad I checked. Also her ultrasound from that morning was great. Rhett and I didn't even react to the initial news because we knew there was a pretty good chance that it would change - typical.

Abby is at a moderate risk as far as all of that goes. She has a high pressure level and can only hold a fairly low volume in her bladder. With those two factors, she may be prone to kidney reflux if the urine was to flow back up into her kidneys, creating infections and other issues. We'll keep getting ultrasounds every 3 months and that will alert the doctors to any negative changes that happen in time for us to prevent any serious issues.

A neurologist and physical therapist finished our visit there. By this point Abby was asleep on my lap and they mostly just asked about her behavior and what we saw of her developmentally. I kind of took the PT's recommendations with a grain of salt because I feel more comfortable with our PT that comes in through early intervention. She has a better grasp of where Abby really is and what she's able to work on in a more real-time scenario. Anyway, I didn't feel his visit was needed. Rude, I know.

Just like that, four hours had gone by and we headed back over to the cafe in the inpatient building to relive some memories. Let's just say that I had dreamed of a sandwich (an actual dream) that I used to order during our stay and I really needed to satisfy that craving. Yes, the "Mind Your Mama" sandwich in the cafe is delicious and I fully recommend it. Hopefully that stops the dreams.

So good. So good.

On Thursday we went to Shriner's for another follow-up on Abby's treatment there. An x-ray of her hips showed that everything is still in place there and her bone is solidifying on track. Woo hoo! Her heel bone in her left foot still hasn't moved down all the way. The doctor said that until she's a year old and starts really putting weight on it by standing, we won't try to do anything else, as it wouldn't be very effective. Sometimes putting weight on it is all it need to finish moving down. Hopefully that's the case so they don't have to lengthen her tendon again or do another procedure. We then got her left foot fitted for an AFO. This is a brace that will go up to her calf, on just her left foot. Once that comes in in a couple of weeks we can just put the connected brace on during the night. You know what that means? She can wear shoes! Well, at least one on her right foot. I'll take it!

Yesterday brought a visit to her pediatrician. She weighed 8 lbs 2 oz, putting her in the 86th percentile, height was 27 inches in the 92nd percentile, and her head circumference was in the 94th percentile. So, pretty good. She enjoys eatin g. She's also got Rhett's height apparently. She's ahead of schedule with sitting up - that's her favorite position and doesn't want to lay down and be treated like a baby... She has good reflexes in her legs - yay! Her pediatrician was very excited about her strength overall. And, I was too. She wasn't thrilled about getting shots, but I don't blame her about that.

Then came last night. Solids for the first time. Man, it was entertaining! We just did some rice cereal and at first she was less than thrilled about it. Between the shuddering and gagging and making faces and screaming, we got the hint that she didn't really enjoy it. Well, that's just too bad. We fed her a bit of her bottle to help ease the hunger and then we jumped back into the cereal. It took her a while to get used to it, but she ended up finishing it and was happy by the end! That's good, because her mother always liked good food. She'll fit in nicely.