After Maggie's little spasms not really getting any better, I had sent an email with a video off to our neurologist. He is concerned that these movements could be Infantile Spasms and wants to get them captured on EEG. The more and more I've read, the more I am convinced that they probably are. Which would be a whole new manifestation. Apparently they have their own chaotic appearance on EEG, so we should have it confirmed with the EEG. I've found myself quite anxious about these changes, as prognosis for intellectual development is not that great, particularly if the etiology (cause/origin) is unknown. I can't image the cause will completely become clear as we have not had much luck yet with the whys.
However, in my further research this afternoon, I have drawn many conclusions and my own theories. There are more rationales in my thoughts, but here goes with the basics...we know low pressures affect her, but I neglected to consider it until we were traveling to Killington Mountain. The night we arrived there is when I first noticed these mannerisms. From my research, Infantile Spasms (IS) can be caused, among other things, by hypoxic ischemic encephalopathy (a lack of oxygen to the brain). Which can be caused by a number of things as well(carbon monoxide poisoning, drug overdose, low blood pressure, a handful of other things, AND high altitude). So, it makes sense that prognosis could be bad if the brain doesn't get adequate oxygen. Which brings us full circle to the drastic pressure change from the C-section and the possibility of hyperbaric oxygen as a therapy. Granted, this doesn't provide complete cause. But it does all seem to fit in the same picture.
Questions still remain...why compromised overall? why trouble with oxygen and low pressure?
I HATE the thought of more medicine and a long hospital stay to try to get this all regulated. But they obviously need to be controlled. (most things say IS appears not a huge deal but has BIG consequences the longer it goes untreated). One thing I did find in my research is that her one effective med is one they consider for effectiveness with controlling these spasms. The effective dose is 8-32 mg/kg/day. If I did my math correctly, from her weight a month ago, she is currently at about 7.2 mg/kg/day.
Tomorrow morning is our EEG that will reveal a lot. I won't be surprised by much on it, as she doesn't seem to be sleeping the best either. However, we are in for a difficult 24 hours (that's before we even have any test results). Tonight we are to keep her up 2 hours late. Then we have to get her up 2 hours early. So, we may get to sleep from 10-5. But, no nursing after 6am. Then we get to drive to Knoxville and not let her fall asleep. Luckily Nana is going to drive us down. I get the adventure of tormenting her the whole way to keep her awake. EEG is at 10.
So...in my idealistic world, she will just be chill the next few hours and will be so busy laughing and chatting with me in the morning that she won't realize how hungry and overtired she is. Heck, over-tiredness makes Momma fairly wired. (and we all know that Cousin Quin can't stop laughing when he is overtired). Maybe, just maybe, she'll follow suit. Then, in my ideal little world, they will just want toup the Zonisamide some and prescribe the hyperbaric oxygen chamber. Easy, right?! Yeah, good luck with that, I know. But hey, why not pray BIG!! Please join me in big prayers to a big God!
In the realm of possibilities, I know God could work in that way, but that doesn't mean he will. As Shawn pointed out, we've been riding on the mountaintop of things going fairly well, but we could be headed back to the valley for a bit. I have actually had some anxiety this week about the whole ordeal. When Mags is out of sorts and there doesn't seem to be anything we can do, I often find myself praying, "Calm sweet Maggie's anxious little heart!" This week, the more fitting prayer is "Lord, calm Momma's anxious heart!"
About Us
- Shawn and Rachael
- Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.
2.27.2013
Big "Brother" Brian
Ironically 8 years ago I was awoken unexpectantly in the middle of the night while in Valpraisio, Chile. In the morning, we had learned there was a small earthquake about that time. The following day I came across a headline online that read, "Iowan Soldier Died". My heart sank when I saw the picture and read the name...Brian Gienau. His death was about that same time. My world had been shaken that early Sunday morning.
Being so far away from home, mourning such a tremendous loss was one of the most difficult things I thought I would ever experience. As I sit with a sweet little girl in my arms, I know that God is able to use these most challenging times in our lives to shape us, mold us, and refine us into His likeness. Little did did I know how those dark moments of relying on God's Truth, redemptive power, and complete faithfulness would prepare for the current battles we are facing.
We have close friends losing their Dad to an awful disease and I am in touch with so many parents with specially abled kiddos in difficult situations. All I can say is "Thank you Jesus for eternity and the perfection that your followers will experience there!" For now, "It is well with my soul". We will choose to sing praises to your Name in the darkest of nights. And what I have found is that these dark times are actually when I can most clearly see the Lord's light and I can see myself in all my helplessness and brokenness and know that it's only through Christ's blood that any of us have any hope.
Brian (and his piss and vinegar self) taught me so much in his life...and even more in his death. At that time, with other major things going on in my life as well, I reflected on the life of Job a lot. Eight years later, knowing I am so far away from home eternally, I am again reminded of the endurance of Job and anxiously await my homecoming. Until that day, we will run this race with endurance!
Being so far away from home, mourning such a tremendous loss was one of the most difficult things I thought I would ever experience. As I sit with a sweet little girl in my arms, I know that God is able to use these most challenging times in our lives to shape us, mold us, and refine us into His likeness. Little did did I know how those dark moments of relying on God's Truth, redemptive power, and complete faithfulness would prepare for the current battles we are facing.
We have close friends losing their Dad to an awful disease and I am in touch with so many parents with specially abled kiddos in difficult situations. All I can say is "Thank you Jesus for eternity and the perfection that your followers will experience there!" For now, "It is well with my soul". We will choose to sing praises to your Name in the darkest of nights. And what I have found is that these dark times are actually when I can most clearly see the Lord's light and I can see myself in all my helplessness and brokenness and know that it's only through Christ's blood that any of us have any hope.
Brian (and his piss and vinegar self) taught me so much in his life...and even more in his death. At that time, with other major things going on in my life as well, I reflected on the life of Job a lot. Eight years later, knowing I am so far away from home eternally, I am again reminded of the endurance of Job and anxiously await my homecoming. Until that day, we will run this race with endurance!
2.23.2013
Another trip in the books!
Boy is this momma glad to be home. I'm worn out! In short, our adventure began 2 weeks ago. Grandpa and Nana Selmeski ventured with us to Connecticut for 3 days of therapy. Then we met up with the rest of the Selmeski clan (minus Daddy) in Vermont. Then returned to Connecticut for 2 more days of therapy. All of it was good, just the lump sum was exhausting.
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.
A lot of attention this trip was given to her cervical base and cranial structure as well as her sacrum. The communication between the sacrum and cranium create the need to jockey back and forth between the two, as well as other structures and soft tissue. Some interesting observations...she has a more defined neck now, whereas before she didn't really have much of a neck. The left side of her forehead has also become slightly more flattened, reducing some inflammation and pudginess. Once again, more inter-cranial work was done within her mouth. Blood flow was improved into and out of the cranium. Of course, attention was given to her sluggish digestive tract. (Today we are up to 6 days in a row with poopers!! Even twice a day thrown in a couple of times) I cannot stress how important that elimination piece is. She is a completely different girl when poopers are moving along well, versus backing up and causing more toxicity. Let's see...what else was addressed...Some work was done within her ears (cranial structure, pressure, balancing). Also, they began some work on her eyes, but that will be a very big project! As I've been informed, the eyes reflect a lot about the body and the optic nerves go all the way to the end of the sacrum.
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.
Maggie, Grandpa, and I mostly hung out in the condo. We did get bundled up the first day to go outside and play on the little sled that was there. She seemed to have a good time. That is until I actually laid her on the snow. I think the coldness went through the suit and started to get her cold.
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!
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.
 |
| Lunch break=naptime!! |
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!
2.05.2013
Genetics Results...
I got a phone call from Vanderbilt genetics a little while ago. I didn't even hear it ring, but seeing the 615 area code, and remembering it's been about 5 or 6 weeks since we sent out the genetics tests, I just knew it was the Menkes results. Without delay, I listened to the message, and... "Magdalyn does NOT have the genetic mutation for Menkes" HALLELUJAH!! This is the very progressive, death within the first couple of years, miserable disease. And, my daughter doesn't have it!! I was careful to listen to the entire message, and the doctor repeated a couple of times that the test was negative. I'm glad it didn't leave me in question. I called Shawn right away! Even though neither of us really thought this was a strong possibility, the weight that was lifted was amazing. It's not that I was worried about it, but knowing she wasn't given that death sentence was extremely freeing. I wanted to shout it from the roof top. MAGGIE DOES NOT HAVE MENKES! Even though we would like answers to know what's going on, I would take no answer any day over the alternative with this test.
p.s. She has been a cooky little smiley bug the past few days! And, she was really strong lifting her neck while on her tummy at PT today!
p.s. She has been a cooky little smiley bug the past few days! And, she was really strong lifting her neck while on her tummy at PT today!
2.02.2013
Please send us a picture!!
I had a great idea this week. (at least I think it's a great idea, and Shawn even agreed!) We have SO SO SO many people praying for sweet little Maggie. Shawn and I hear it all the time, but Maggie may never know quite the extent of the prayers for her. If you are praying for sweet Mags, please send us a 4x6 picture. Feel free to just address it and place a postcard stamp on the back to send it as a postcard. I'm wanting to make a little flip book for her so we can look through it and see all the wonderful people interceding for us! I think about what that could do for her faith during potential times of doubt when she gets older.
Thank you!!
Thank you!!
Moving forward...(kind of)
So, I'm feeling like we are on the cusp of really moving forward. We definitely have a few setbacks here and there...the past couple of days being a little off. But for the most part, I think we are back on track.
First of all, we've been trying to get serious about this whole idea of gaining weight. And, in 2 1/2 weeks since her Vandy appointments, at 13 lbs. 12 oz., just yesterday, she weighed in at...DRUM ROLL please....14 lbs. 11 oz. Yep, Little Miss gained just shy of 1 pound in 2 1/2 weeks!! Just looked it up and the average this age is one pound per month. I guess we are growing!! She's been introduced to avocados, carrots, pears, and prunes. Unfortunately, we've been having some trouble with a bottle lately. Of course, like other things, I have suspicions about this. After observing and thinking through things a bit today, I think it has to deal with inter-cranial pressure (perhaps drainage issues). She will take a bottle sometimes...completely just depends. So, nursing all the time it is. Momma tried to get a break for a night out with the ladies to celebrate birthdays and had to cut it a little short to get home to a protesting little girl and upset Daddy. Realizing that it could be a bigger issue than just separation from Momma provides a little more motivation for me to know that nursing is easiest for her. As for the prunes...yep, we have those for at least one meal every day. We continue to have some constipation issues. If you want to know one thing specific to pray for, pray for Maggie's poopies to keep moving. We pray for poo ALL the time!
We are completely off the Trileptal (yeah!) and just today began the Clonazepam wean. We are prepared that things could get worse before they get better as her body detoxes, but it'll all be fine. The medicine wean is a major area of being led by faith and not fear. Fear would cause us to keep her sedated on all the meds, no matter what, to be absolutely sure she doesn't have seizures. However, we trust God as He leads us. We know that the anti-convulsants are also negatively impacting things. So, finding the delicate balance is the tricky part. Maintaining seizure control while trying to free her systems up a bit. Luckily, Shawn and I continue to be on the same page, and therapy and neurology are all on board as well. So, here goes!
Though we got rid of one of the medicines, we added another therapy. Last week we began speech therapy. I know, why does she need speech now? At this age, they work with us on feeding, making sure she is forming mouth correctly and moving the food properly with her tongue. Thankfully, this week she was finally pleasant for her occupational therapy appointment and starting out at speech. Both of them are here in town and are considered our short day of therapy.
We also had an ophthalmologist (eye doctor) appointment this week. He believes she probably isn't seeing the greatest. Her prescription has improved a little bit since our last appointment in September, though glasses would not be of benefit yet. Also, her eyes are slightly out of alignment. Originally, he noted her vision as "delayed visual maturation"-just slow to develop. He is now leaning more towards "cortical visual impairment", which is the communication between the eyes and and brain. He told me it is like a digital camera. You can take pictures all day long, but if there isn't a memory card, the images are gone. Basically we'll just wait and see. Another... "I'll see you in 6 months". I'm confident that as we continue with the therapy, we will continue to see improvements in this area. She'll occasionally have bouts of random laughter. Though I figure it is for some reason, I have never been able to figure out what in the world she is chuckling about. (It is really adorable and contagious). While we were waiting for her eyes to dilate, she was chuckling away 3 or 4 times. It got me thinking about what the dilation was doing. Upon a conversing with the PT assistant the next day, she told me that she knows from personal experience that her the tension on one of her eyes relaxed and her entire side of her face was actually able to relax when she had her eyes dilated once. So, what we know from therapy with the tension pulling back and down about was probably relaxed a little bit with the dilation, which probably felt really good. Interesting...
Some things I've been mulling around...
yeast overgrowth (candida)?? sodium retention?? heavy metal toxins?? leading to a mitochondrial disorder?? Now, it's just figuring out how to assess these things. Hopefully we will be doing a big blood work-up when we meet with the doctor out of New York while up in Connecticut.
Which, that brings me to what's coming up. Next Sunday, Nana and Grandpa Selmeski head up to Connecticut with us. We will have 3 days of therapy. Then we are meeting up with Uncle Brian and the cousins to go skiing in Vermont for the long weekend. I know Maggie's little life has had tons of experiences already, but, no...she will not be trying to ski. We'll be hanging out enjoying some down time and giving her body some time to assimilate all the therapy. Then, on our way back, we will have 2 more days of therapy. I'm sure we will be ready to see Daddy when we get back after the BIG trip.
As we close, I'd like to point out that we have been getting serious about our therapy homework (which is a part of her overall feeling better, I'm sure). Thankfully, we have had some great homework helpers to get all our connections made. Mostly it's the Friday morning coffee girls joining us throughout the week. We all really appreciate the help!! THANK YOU ladies and the kiddo helpers!!!
First of all, we've been trying to get serious about this whole idea of gaining weight. And, in 2 1/2 weeks since her Vandy appointments, at 13 lbs. 12 oz., just yesterday, she weighed in at...DRUM ROLL please....14 lbs. 11 oz. Yep, Little Miss gained just shy of 1 pound in 2 1/2 weeks!! Just looked it up and the average this age is one pound per month. I guess we are growing!! She's been introduced to avocados, carrots, pears, and prunes. Unfortunately, we've been having some trouble with a bottle lately. Of course, like other things, I have suspicions about this. After observing and thinking through things a bit today, I think it has to deal with inter-cranial pressure (perhaps drainage issues). She will take a bottle sometimes...completely just depends. So, nursing all the time it is. Momma tried to get a break for a night out with the ladies to celebrate birthdays and had to cut it a little short to get home to a protesting little girl and upset Daddy. Realizing that it could be a bigger issue than just separation from Momma provides a little more motivation for me to know that nursing is easiest for her. As for the prunes...yep, we have those for at least one meal every day. We continue to have some constipation issues. If you want to know one thing specific to pray for, pray for Maggie's poopies to keep moving. We pray for poo ALL the time!
We are completely off the Trileptal (yeah!) and just today began the Clonazepam wean. We are prepared that things could get worse before they get better as her body detoxes, but it'll all be fine. The medicine wean is a major area of being led by faith and not fear. Fear would cause us to keep her sedated on all the meds, no matter what, to be absolutely sure she doesn't have seizures. However, we trust God as He leads us. We know that the anti-convulsants are also negatively impacting things. So, finding the delicate balance is the tricky part. Maintaining seizure control while trying to free her systems up a bit. Luckily, Shawn and I continue to be on the same page, and therapy and neurology are all on board as well. So, here goes!
Though we got rid of one of the medicines, we added another therapy. Last week we began speech therapy. I know, why does she need speech now? At this age, they work with us on feeding, making sure she is forming mouth correctly and moving the food properly with her tongue. Thankfully, this week she was finally pleasant for her occupational therapy appointment and starting out at speech. Both of them are here in town and are considered our short day of therapy.
We also had an ophthalmologist (eye doctor) appointment this week. He believes she probably isn't seeing the greatest. Her prescription has improved a little bit since our last appointment in September, though glasses would not be of benefit yet. Also, her eyes are slightly out of alignment. Originally, he noted her vision as "delayed visual maturation"-just slow to develop. He is now leaning more towards "cortical visual impairment", which is the communication between the eyes and and brain. He told me it is like a digital camera. You can take pictures all day long, but if there isn't a memory card, the images are gone. Basically we'll just wait and see. Another... "I'll see you in 6 months". I'm confident that as we continue with the therapy, we will continue to see improvements in this area. She'll occasionally have bouts of random laughter. Though I figure it is for some reason, I have never been able to figure out what in the world she is chuckling about. (It is really adorable and contagious). While we were waiting for her eyes to dilate, she was chuckling away 3 or 4 times. It got me thinking about what the dilation was doing. Upon a conversing with the PT assistant the next day, she told me that she knows from personal experience that her the tension on one of her eyes relaxed and her entire side of her face was actually able to relax when she had her eyes dilated once. So, what we know from therapy with the tension pulling back and down about was probably relaxed a little bit with the dilation, which probably felt really good. Interesting...
Some things I've been mulling around...
yeast overgrowth (candida)?? sodium retention?? heavy metal toxins?? leading to a mitochondrial disorder?? Now, it's just figuring out how to assess these things. Hopefully we will be doing a big blood work-up when we meet with the doctor out of New York while up in Connecticut.
Which, that brings me to what's coming up. Next Sunday, Nana and Grandpa Selmeski head up to Connecticut with us. We will have 3 days of therapy. Then we are meeting up with Uncle Brian and the cousins to go skiing in Vermont for the long weekend. I know Maggie's little life has had tons of experiences already, but, no...she will not be trying to ski. We'll be hanging out enjoying some down time and giving her body some time to assimilate all the therapy. Then, on our way back, we will have 2 more days of therapy. I'm sure we will be ready to see Daddy when we get back after the BIG trip.
As we close, I'd like to point out that we have been getting serious about our therapy homework (which is a part of her overall feeling better, I'm sure). Thankfully, we have had some great homework helpers to get all our connections made. Mostly it's the Friday morning coffee girls joining us throughout the week. We all really appreciate the help!! THANK YOU ladies and the kiddo helpers!!!
"Christmas" letter...
Yep, world's latest Christmas letters got sent out this week. Should have or be landing in most homes. I wasn't exactly thorough with getting them out, so here's our "Christmas" letter and picture! If you would have expected one, and we missed you, I apologize for the oversight. My process wasn't the greatest this year!
I have to admit, though we held little stock in the hype, I was quite disappointed to wake up on the 22nd, confirming the world had not ended. (in part because looking at the date reminded me I would be 30 in a month) The other part was being hopeful for our eternity and perfection in heaven. All in all, I guess it means we need to get Christmas cards done. Possibly, just maybe, we are also dragging our feet because we just don’t know how to summarize our year.
Each one of us is called to the same mission of giving the Lord glory and sharing His story. Though it is the same mission for all of us, it looks drastically different for each individual. Neither of us could’ve expected how this past year would unfold or where we fit in the story.
The anticipation and excitement of the birth of Little Miss kept us in wonder for the first 5 months of the year. Magdalyn Joy’s birth on May 15 seems like an eternity ago. She has definitely fulfilled her name by bringing so much JOY into our lives. Needless to say, much agony, heartache, and uncertainty has also taken up residency in our home.
At 6 weeks Maggie began having full tonic-clonic (grand mal) seizures. We’ve had 3 LONG stays at the hospital (emotionally longer than the physical stay--compared to other families that are there for months.) Throughout this year’s journey, I have gained my own medical degree and we have learned SO much about God’s amazing creation, our bodies. It is absolutely fascinating how everything works together, or, in Maggie’s case, has some trouble.
As of now, we have absolutely NO answers. She is on 4 anti-convulsants, has had multiple tests (MRI, CT scan, bloodwork), only to determine there is a lot that‘s not quite right. The therapy we have found (Integrative Manual Therapy) has proven to be a tremendous blessing in helping to restore her systems to work more optimally together and has allowed her to make strides developmentally. We have all dramatically changed our eating habits and try to limit as many toxins as we can in order to lighten the load on her system. We continue to seek answers with genetic tests, continued therapy, and other possible treatments.
Our paths have crossed medical professionals, other “special” parents, and complete strangers that we have been able to encourage and others that have encouraged us. There is no way we would ever be able to survive this major trial without His renewed strength and the amazing body of Christ, all our friends and family.
Even though we know nothing and often wonder if any given situation is going to be her tipping point, our trust and faith rely in the ONE who is in control. We rest in the fact that neither death nor life can separate us from His love. Maggie’s compromised health is a key component in how our family shares His story.
Feel free to follow our continued journey and check out other info at www.theselmeskis.blogspot.com & www.miracle4maggie.com.
Love-Shawn, Rachael, & the Magster
I have to admit, though we held little stock in the hype, I was quite disappointed to wake up on the 22nd, confirming the world had not ended. (in part because looking at the date reminded me I would be 30 in a month) The other part was being hopeful for our eternity and perfection in heaven. All in all, I guess it means we need to get Christmas cards done. Possibly, just maybe, we are also dragging our feet because we just don’t know how to summarize our year.
Each one of us is called to the same mission of giving the Lord glory and sharing His story. Though it is the same mission for all of us, it looks drastically different for each individual. Neither of us could’ve expected how this past year would unfold or where we fit in the story.
The anticipation and excitement of the birth of Little Miss kept us in wonder for the first 5 months of the year. Magdalyn Joy’s birth on May 15 seems like an eternity ago. She has definitely fulfilled her name by bringing so much JOY into our lives. Needless to say, much agony, heartache, and uncertainty has also taken up residency in our home.
At 6 weeks Maggie began having full tonic-clonic (grand mal) seizures. We’ve had 3 LONG stays at the hospital (emotionally longer than the physical stay--compared to other families that are there for months.) Throughout this year’s journey, I have gained my own medical degree and we have learned SO much about God’s amazing creation, our bodies. It is absolutely fascinating how everything works together, or, in Maggie’s case, has some trouble.
As of now, we have absolutely NO answers. She is on 4 anti-convulsants, has had multiple tests (MRI, CT scan, bloodwork), only to determine there is a lot that‘s not quite right. The therapy we have found (Integrative Manual Therapy) has proven to be a tremendous blessing in helping to restore her systems to work more optimally together and has allowed her to make strides developmentally. We have all dramatically changed our eating habits and try to limit as many toxins as we can in order to lighten the load on her system. We continue to seek answers with genetic tests, continued therapy, and other possible treatments.
Our paths have crossed medical professionals, other “special” parents, and complete strangers that we have been able to encourage and others that have encouraged us. There is no way we would ever be able to survive this major trial without His renewed strength and the amazing body of Christ, all our friends and family.
Even though we know nothing and often wonder if any given situation is going to be her tipping point, our trust and faith rely in the ONE who is in control. We rest in the fact that neither death nor life can separate us from His love. Maggie’s compromised health is a key component in how our family shares His story.
Feel free to follow our continued journey and check out other info at www.theselmeskis.blogspot.com & www.miracle4maggie.com.
Love-Shawn, Rachael, & the Magster
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