Hudsyn's Stem Cell Therapy: 1-Month Update
It's been one month since we visited Panama where Hudsyn received her first stem cell therapy injections. We wanted to give everyone an update on how she's doing and what life has been like since our trip. Improvements We've Seen 1. The spasticity in her legs is much less than before as confirmed by her physical therapists. This means her arms and legs aren't as stiff and "locked" as they used to be. No longer do you have to push hard to get her knees to bend. She also seems to be bending one arm a lot more than she used to when reaching for something. Granted, the high tone isn't completely gone, but we've seen a big improvement which has helped her in PT work and gross motor skill development. Her trunk and upper back strength have improved...as seen in this PT session...
2. She's responding and "looking" more intently. Although her CVI (Cortical Vision Impairment) is still very present, we're excited to report that she is now looking toward sounds and peripherally choosing objects when presented with two options. Her recent visit to the Opthamologist confirmed she is near sighted and has astigmatism in both eyes (just like her Mommy)...but is still going to make it difficult for her to see properly.
She sees much better peripherally than anything, which is tough to explain to people that want her to look at them directly. She's not blind, she just sees better out of the sides of her eyes than out of the front. Her optical nerve is still pale, but it hasn't shown a decrease in viability, so this is good. She's stable.
3. Her new therapy team at Rehabilitation Institute of Kansas City (RIKC) has been very excited about her progress this month. During the first week (which they call "evaluation week"), she was enrolled in intense 1-hour physical therapy which included two therapists (a PT & and OT), putting her mainly through rollover bootcamp. She didn't do much that first week, but by week 3, she was showing signs of being motivated to roll over for her favorite toy. Mike (her PT) no longer had to do all the work...it became more like 50/50.
Recently, I got to attend one of her sessions where Erin (OT) and Mike were working with her on various things. I got video of the rolling, which as I mentioned was slowly improving from the first video Dan showed me. This time, though, she was expressing her frustration toward the end when Erin kept moving the toy (her motivator to get to the end of the mat) further away. You can see evidence of that here...
4. We've added speech therapy to her schedule. After the PT/OT session each day at RIKC, she then sees April in speech therapy who works mainly with Hudsyn's iPad and a Bic Mac (response button) to encourage Hudsyn to communicate with us. At first, it was basic things like singing a song and asking Hudsyn to repeat the main "phrase" by pressing the Big Mac. Shown here...
It then progressed to offering her choices...does she want the Kangaroo toy or the talking Elmo? (She always went for the Kangaroo even after switching buttons). This past week was even more exciting. Hudsyn was given a variety of objects. April (her speech therapist) and Dan showed her a ball, let her touch it, feel it, repeated the word "ball" several times and then put an image of the ball on her iPad. They did this exercise until they had five objects with matching images. The iPad app allowed her to see two objects at a time. April would give the voice command for "ball" when she was looking at an Elmo Train and the Ball image on the iPad. Hudsyn would be encouraged to touch the ball image. This lasted for about an hour and our end result was that she was accurate nearly 90% of the time!!! This was huge and our biggest leap forward yet.
These exercises shows us that she IS cognitive and there is a little person in there wanting to communicate...we just need to be patient and figure out how we can meet her where she is so we can help her learn more.
April is very encouraged by this progress in such a short period of time that she and her other therapists are advocating for Hudsyn to come to RIKC regularly for as long as we can without incurring out of pocket costs. They are helping us to appeal to our insurance company (BCBS-KC) to get coverage of more than the measly 40 total therapy visits a year they provide.
Her vocalizations (like in the video below) have also increased. Before stem cells, we saw this maybe once a day or even a few times a week. Now we see this kind of interaction a few times a day...
5. Her sleep patterns overall have definitely improved. She went from sleeping 2-3 hours at a time before wakings to now averaging 5-7 hours at a time. Her napping has also increased. All of this has been a big blessing for both Dan and I in caring for her. Although we still see the occasional rough night, many of these nights are due to being overly tired or a rough teething period. But we focus on the positive...and we'll take all the extra sleeping we can get!
6. Vomiting used to occur multiple times per day. This is what got us the G-tube in the first place because her gag reflex was so prevalent. Since getting the G-tube, we have been hesitant to put anything in her mouth because it would cause her to vomit the food we had worked so hard to get into her via her food pump. Although we did add Prilosec before our trip to Panama, we have seen a huge decline in vomiting that I can't attribute just to the Prilosec. I truly believe she had some issues with her Pyloric valve not functioning properly (a typical neurological issue with CP kids according to our pediatrician) that have since been fixed by the stem cell therapy.
7. Because of #6, we also weren't able to do bolus feedings...until now. Bolus feedings are where we could put a large amount of KetoCal (formula) or water into her belly all at once. Her feeding pump speed couldn't be set much higher than 170 or she would vomit halfway through the feeding. One evening, I accidentally put her rate at 210 and her amount at 150 for her night feed. These two numbers should've been reversed. After about 45 minutes, her feeding pump was beeping at me, saying it was done. I had a prego brain moment and then realized what I'd done. She hadn't vomited...hadn't even gagged during the feed. But more importantly, she'd just proven to me even with my mistake that she could take a large feed and FAST! This was a big leap from where we were a month ago.
Some Backsliding We have seen some negatives in the recent month. Her seizures are off the charts again. We had two days where she was close to 30 seizures in a day...we get concerned at 15-18 and look for things like teething or illness to trigger spikes like this. However, this increase is mainly due to the fact that she was thrown out of ketosis while we were in Panama because I packed the wrong diaper cream. (Yes, it's that easy for her to go off the diet and have breakthrough seizures.)
We've been working hard and paying very close attention to anything that comes into contact with her skin since then. I've been careful not to apply lotion or creams to my face/body before I pick her up or kiss her. Things that are as simple as this can cause more seizures. We've been monitoring her ketones each day as well. We started off with little success, but I can happily say that by week 4 of this attention to detail, we're finally back in moderate ketosis and we're seeing a significant decline again. We'd like her to be a bit further in, but we'll take what we can get.
Another interesting thing we've seen that's been a downside is her crying or what I call "level 5 screamers." Especially at night, just before bed or when trying to go to sleep, she seems to be expressing her opinion of NOT wanting to wind down and is very inconsolable. I hear this is typical toddler behavior, but we've never known typical so have had no idea this could occur until now. Once I found out this was more "normal," and probably attributed to the fact that she's becoming more cognitive, I felt relief. Man oh man does she have lungs, though! I feel bad for her new (soon-to-be roommate) baby brother who will have to endure the nightly scream fest.
On occasion Dan has even "chewed her out" for her behavior...basically telling her "Daddy is very disappointed in your crying and screaming and that you are going to be a big sister so you need to shape up and show your brother how to act when he gets here...and this is certainly not the way to do it."
He said at that point, she stopped crying and really "looked" at him...then gave him a big fat lip, whimpered and got all sad...as if thinking he didn't love her anymore. Welllll, daddy gave in and of course gave her a big hug saying he loved her more than anything but that she needed to adjust her attitude. Not long after this emotional outburst, she fell asleep and didn't wake until morning. As you can imagine, Dan was excited but also very touched by her response.
The Best Things in Life Are Free As we saw in Panama, we are continuing to enjoy Hudsyn's increased responsive smiling and reaching. Several times a day, Hudsyn will now respond to voice by cooing, gurgling and babbling. This is also usually accompanied by her desire to sit up, reach or touch something.
A few weeks ago, her Godmommy, Tina took a trip to Washington state for work. We thought it would be nice for her to hear a familiar voice from home by sending her this...
Other New Adventures My second pregnancy is going well, thankfully. Dan and I have decided on a name (finally) but we are waiting to announce this to the world upon his arrival day. The C-Section is scheduled for 12-12-12...at Noon. Crazy, eh? If you all remember, Hudsyn was due 10-10-10...so apparently we have a thing for numerology in our family.
This last trimester has come on strong with a whole new wave of fatigue here and there. Although, overall I'm feeling great. I'm exercising 3-4 times a week and trying to eat right. However, I'm never one to turn down ice cream or chocolate when the opportunity arises.
I had a great 34th Birthday last month. I didn't want a huge celebration, so it was just my family, Dan and a few friends who went to Cinzetti's for dinner in Overland Park. If you're going to cheat with food, this is THE place to do it. Their dessert bar is awesome and what's not to like about an all you can eat Italian place when you're pregnant?!
Dan got me a beautiful jewelry box, which has now found a home in my bedroom...and that morning, I awoke to a fresh bouquet of fall flowers...so pretty:)
I had a few other "mini" celebrations that month. Some girls from work took our first "girls night out" and attended the Sporting KC soccer game at Livestrong. This was my first time sitting in the cauldron and I can happily say it might be my last. Although it reminded me of the excitement and fervor of being back in college and cheering in the student section (loud, noisy and constant activity from the makeshift band), it was a bit "too" exciting as we sat directly behind the goal posts and thus were having to make sure to duck every time a kicked ball came racing toward our heads. Don't get me wrong, it was a VERY fun night and the Sporting KC ended up in a tied game with Houston, which was better than a loss to the rival. Dan and I are becoming quite the soccer fans, but I still don't get this part of the sport...there can be a TIE?! It's definitely something I'm having to get used to after so many years competing on team sports where this doesn't happen.
I went to work that same week and was given a gluten-free chocolate party. I am proud to report I tried everything from a homemade chocolate torte to Trader Joe's chocolate dipped potato chips.
Yes, yes, it was a fantastic birthday and I can honestly say, life is pretty good at the moment. I have nothing but gratitude and love surrounding me these days...and all of you have continued to be a big part of that for us. Thank you again for your continued reading and support.