We were able to get a lot accomplished at therapy. However, it still seems like a long journey ahead. Just the week before we left, finally the cervical base showed up as a priority when Piotr was assessing her. At our first visit way back in September, that is what I expected to get worked on. With IMT, they "listen" (feel) to the body to know what the priority is. Maggie first needed the rest of her body functioning well to be able to help support all the cranial work that needs to be done. The blessing is that her body is ready to support that. But, it is a very delicate balance as they navigate back and forth between various systems.
While we were away, I forgot to bring any story books to read to her at bedtime. So, I just opened up to the book of Matthew in the Bible and started reading it aloud to her. Interesting enough, while snuggling one night on the bed after therapy, we came across this verse...
22 “The eye is the lamp of the body. If your eyes are healthy,[c] your whole body will be full of light. 23 But if your eyes are unhealthy,[d] your whole body will be full of darkness. If then the light within you is darkness, how great is that darkness!
Hmm...Truth in the physical realm too. I am amazed at how many verses just come alive and take on new meaning as I learn more and more about the body. The cool part is that God knew that the written Word He was inspiring was literal as well as figurative Truth! How cool is that?!?!
Just before that verse was a couple about storing up treasures, so we made a point to read that to Grandpa. If you all have seen the Selmeski Compound, you know what I mean.
Oh yeah....we also are sending off a NutrEval test. Dr. Jo, out of New York, came up and drew her blood. And, I had to collect a urine sample. Let me take a side bar and tell you about this adventure of collecting urine. We were told to pick up infant urine collection bags at any pharmacy. After driving around town checking multiple pharmacies and even a medical supply store, we had zero luck locating these bags. With that handy-dandy internet thing, I was able to search and at least get an idea of what this was and how it worked. Basically, it's a bag with a sticky area around an opening that you stick on and leave inside her diaper. So, I figured we could come up with something. With a few ziploc baggies, Nana's scissors, and Grandpa's medical tape, I began my experimenting. Not only was it a urine sample, but it had to be the morning urine on the same day as the blood draw. Talk about pressure. I spent half the day on Tuesday trying to perfect the apparatus and drinking lots of water so she in turn would be hydrated. Then, I had to get up in the middle of the night (urine only 6 hours before morning urine could be included) to get the final one all in place, hoping and praying I had it figured out. Not convinced, I gave it my best shot. I did not sleep much at all that night as I kept checking to see if she wet at all and if enough collected. About 5 am I had an idea of setting her over a bowl since I was holding her somewhat upright anyways. So...the dilemma...I was not convinced that either method would be successful, but I knew if I took the baggie off, I wasn't reconstructing it, so we stuck with the baggie. An hour or so later, I felt warmth...yeah, she had peed, and I thought I was getting it, but, lo and behold, the design had failed me. We had a breach in the system and I ended up with half her urine all over the bed. So, quickly on to plan B. By this time, Grandpa had gotten up and was headed down to breakfast. He brought us a little plastic bowl back. So, there we sat...Naked baby sitting with little butt in the bowl nursing. It was quite the picture. (I did take one, but not worth putting on the internet) She nursed and nursed and nursed. Finally (shouldn't have been a finally), we prayed for her to tinkle tinkle tinkle. And...just a few moments later, I hear it hitting the bowl. In an attempt to collect it all and not dump it, I started to jostle her a little bit, and she stopped mid stream. Grr... We needed to fill 3 viles full, and the tablespoon we had was not going to cut it. So, she nursed and sat on her bowl. And, we prayed again. This time, that she would tinkle tinkle tinkle AND Momma would be able to catch it. I made sure she was positioned in a way I wouldn't have to interrupt her, and... she went peepee! And, I collected it. So, diaper on and I had to meticulously transfer it to the viles, and then we would be good to go. With, my vile holder (aka Nana), we filled all three viles perfectly, with just the right amount and no extra. Praise God! I know, really??, did I just go on about peepee for that long. I did! And let me tell you why...because it was just another example of God's faithfulness. He is our portion and and supply. He meets all of our needs, even with exactly the right amount of peepee! And as for the blood draw, aside from the initial stick, she actually slept through all 5 viles getting filled!
So...what exactly is this test?? As described..."NutrEval provides a framework of core nutrients in 5 key areas: Antioxidants, B Vitamins, Digestive Support, Fatty Acids, and Minerals." It will also check for heavy metal toxicity. We hope this may shed some light on what is going on as far as metabolizing, nutritional, etc. For now, we will just wait!
Our time in Vermont was a lot of fun. Nana and Grandpa take the grandkids skiing each year. Usually they go up to Canada, but with a shortened schedule, they decided on Vermont, Killington mountain to be exact. Now, bad momma neglected to take into account Maggie's issues with pressure and elevation. As we were driving there, I began to consider this as she was fussing. I realized that she easily could be miserable all weekend and we may need to come up with a plan B. Thank goodness after we got there and she get a good nap, she was feeling a little better. Unfortunately, over the weekend she did develop a seizure-like mannerism. Upon waking, while coming into an alert state, she has a pushing of her arms forward and slight rolling of the eyes. It gradually dissipates over the first 5-10 minutes after waking and then disappears. We are currently in the middle of the Clonazepam wean, so we backed off weaning any further and we are just holding our own, trying to find a new normal. Her disposition doesn't change and it doesn't seem to adversely affect her much, so we just wait it out a little bit. We knew going into the wean that she could have some withdrawal issues, so it's not terribly disconcerting at this point. But, worth monitoring for sure.
|The cousins were excited to go skiing. Maggie, not so sure|
|Enjoying some prunes with Uncle B!|
|Love these smiles!|
Lucky for Momma, Amelia and Quin demanded that I go do a couple of runs too. Since Amelia and I are about the same size (height and boot size that is), Amelia hung with Mags, while Quin was my tour guide on the slope for a bit. I was just starting to get a little more brave when I figured I better get back. I was glad they strongly encouraged Aunt Rachael to get out there for a bit! Maggie enjoyed all the time she got to spend hanging out with her cousins and Uncle Scott and Uncle Brian. The only bummer was that Daddy didn't get to join us too! :(
Which...to add insult to injury, Maggie and I got home last night from our 2 week endeavor, but Daddy had to leave yesterday morning to head to a production gig over in Arkansas. So, it'll still be a few more days before we get to see Daddy. I wonder if they'll even recognize each other. We can't wait to see him. It seems like it's been forever!