Mason was born May 10, 2016 and we were in the NICU for 15 days until May 25th. Seth graduated from the Maneuver Captain's Career Course (the 6-month reason we were at Fort Benning) on June 15th, but the Army let us hang around Fort Benning until the end of July to make sure Mason was all settled before our move. We needed that time.
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| At Seth's graduation |
He started serial casting to correct his clubbed feet on May 31st. This means that each week, we made the two hour trek to Atlanta to get new casts on his legs/feet. The orthopedic surgeon, Dr. Olszewski, would place casts on his feet and hold them in a more correct position (a little more each week) until they were stretched to normal. This went on until July 12th when she performed a procedure where she made incisions in his Achilles' tendons and stretched them the rest of the way. A final cast in the OR after the procedure and a week and a half later, his feet were free and into braces! That is the gear we are still currently wearing--a Ponseti bar with attached AFO boots. These can come on and off but stay mostly on. Eventually, we will move to more ambulatory boots during the day with the bar and shoes at nighttime and naps.
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| His first casts |
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| The bar & shoes |
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| His first bath that finally happened at 2.5 months old once his casts were gone! |
We also had several trips to see Dr. Brahma, his neurosurgeon in Atlanta, during that time. On what was supposed to be our last trip, July 19th, they discovered that Mason's VP shunt had malfunctioned and that he needed to have a revision. It took place the next day, on July 20th. Thankfully, the only sign he presented with for this malfunction was an increased FOC (head circumference). We had actually noticed it, but had been reassured that without symptoms of increased pressure in the brain it didn't warrant emergency surgery. We were glad that they were able to get us in for the revision the next day. The portion of his shunt that rests in his ventricular space in his brain had blocked by the chloroid plexus, which is just the part of the brain that produces CSF. The neurosurgeon said that it was a little like something getting sucked into the drain of a swimming pool. He replaced that part of the shunt and, thankfully, that was all that was needed to correct the problem. Mason did come off of this procedure more rough than he had any other procedure to date. He vomited twice in the first 24-hours and had a difficult time waking up fully. After the first 72 hours, he was back to himself. However, he did look like an alien for a month or so while his skull bones readjusted to his brain after having filled up with all that extra fluid.
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| Alien head post-VP shunt revision |
We moved to Texas the next week. That part was extra stressful because we always choose to move ourselves instead of having the army pay to move us. You pocket the majority of the money that they would have instead given to the movers if you do it that way and we choose that money over our sanity. Seth wasn't due to report to Fort Hood until the second week of August, so we got to spend a lot of time visiting with family and celebrated Aden's second birthday before we moved down to Fort Hood. Our house on base wasn't ready for a bit, so we lived in our travel trailer on Belton Lake for three weeks and living in a travel trailer with a two-year-old, a 3-month-old, two golden retrievers, and my husband is not something I would ever want to attempt again. Thankfully, our house was ready much sooner than we anticipated!
We did have a scare at the beginning of September. I was convinced that Mason's shunt had blocked again. He was acting slightly more fussy and his fontanel felt full. His shunt checked out ok, but apparently he had a virus that caused his platelets to be low and allowed for his VP shunt to cause a little bit of bleeding on both sides of his brain. His body reabsorbed the blood after his platelets went back to normal and everything was fine. However, because we presented with an infant with a chronic health condition with bleeding on his brain, and Seth is in the Army, we flagged as high risk for abuse and had to handle a case opening, and subsequently being closed after a home visit with CPS. I was very angry at myself during that time. I was the one who felt like something was wrong and because of my alert we were being investigated by CPS. The physicians cleared us of any worry about abuse while we were in the hospital, but because CPS had been notified, they had to follow-up on the investigation. At one point Seth had a CPS caseworker (from the wrong county who mistakenly got our file) say to him "Look, I'm not trying to storm in and take your kids, JUST YET." We had already been told by physicians that there was no reason to suspect that we abused our kids and yet someone whose job is to protect kids who are being abused/neglected had the poor professional skills to threaten that taking our kids away was a possibility. Thankfully, the case worker who was supposed to have our file got it and closed our case very quickly. This experience was more than humbling. In my ignorance, I didn't realize that CPS cases can be opened so easily and get closed routinely for situations just like ours. I know that God's plan is perfect and that our experience will prove helpful at some point, whether it be to help show grace or reassurance to parents in a similar position or just to humble us even further away from our thoughts about "those people" (in this case "those people" are people investigated by CPS but it means different things at any given time). To-date, I am still looking for my chance to help someone because of this experience and still struggle with lots of negative feelings about it.
Other than that, our lives have slipped into a routine. We are so very grateful for that. Mason had his circumcision on November 22nd and that was the last procedure that we knew was coming. His being circumcised will help decrease his risk of UTIs, which is awesome because he has already had one. We catheterize him five times a day now and he takes oxybutynin three times a day to help with bladder elasticity. That is a real bummer because he has to take it on an empty stomach. Trying to convince a baby that he doesn't need breastmilk when he is hungry is pretty difficult when his caregiver is the source of that milk. We see the physical therapist once a week and he has already made some great improvements since seeing her. We shouldn't see the neurosurgeon until March for a repeat MRI (six-months from his last visit). Our next orthopedist appointment is also in March and we are hoping to get to move to some shoes that will help facilitate more mobility during the day at that time. We will see the urologist for some urodynamic studies in April and we hope to see that this oxybutynin is helping to reduce the pressure in his bladder, thus reducing the risk of damaging his kidneys. In the meantime, we hope to get established on the neuromuscular team in Temple so that one day we will be able to go for one long day and hit a lot of his specialists.
Mason loves to roll around as a means of transportation. He still is a bit wobbly with sitting, but is definitely getting more stable. He is starting to move his knees up like he might try to army crawl soon, but we also know that it might be a while before he has the strength to do it. Because of the lack of innervation to his lower legs, a lot of the accessory muscles in his calves and down don't work as well as they should. This hopefully means that he will just need a little bit of help with walking with some ankle support, but all of that will reveal itself in the future.
At this time, we just ask that you continue prayers for strength for Mason and peace for us. It is very easy to let the devil poke at our dreams of having a "perfect" child. Especially when we will most likely never know if his Spina Bifida was caused by a folic acid deficiency in me early in his pregnancy, by a gene mutation, our genetics, or a mixture of them all. We are currently participating in a study with University of California San Diego to explore the involvement of DNA in Spina Bifida. It is a little reassuring to know that through the research of our DNA, they might one day know more about Spina Bifida. I know that God wants to use Mason specifically to help further his Kingdom and I hope that one day that knowledge overcomes my fears and worries for my son.
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