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Tuesday, July 2, 2019

We are still here!!!

Wow, it has been a while. Obviously life has really been busy with our family (including a new member), and I have had every intention to write, but it has gotten away from me. Having said that... here is the best I can do to try and catch up!

I am going to attempt to break down the last two years in two separate posts and then what has happened so far in 2019. I know there are things I am going to forget, and I will try to be better about updating on how things are going for Carter and what we are learning together with him about Spina Bifida.

Recently, Spina Bifida has blown up with social media; the news, Good Morning America, The New York Times, it is growing and people are learning more about it which is amazing! This also means that there are a lot of opinions being thrown back and forth and I get it, it's the internet and we have all learned that thoughts and feelings being thrown around happens.

However, this blog is for me to share our story, what we know, and what we are learning about Spina Bifida as Carter grows. We are sharing our story, his life, and what we learn along the way. There may be a time where he doesn't want me to keep writing or he wants some things private, and if or when that day comes I will stop or only share what he is okay with sharing. I try to think of that now and there are things that I do keep private because his story is out there a lot and can be found in other places, so if there are pieces that stay between our family, for Carter's sake, I'm fine with that.

As he gets older I am also learning that my updates may not just be Spina Bifida focused, but may talk about the IEP process for school, field trips, dealing with the wheelchair; other pieces that when Carter was younger, wasn't something I had to worry about or focus on. As I learn, I will share, and hopefully it will help someone else along the way.

Having said that, and letting people know we haven't forgotten about this blog or his updates, let's jump right in!

What our family looks like now! 

Sunday, January 1, 2017

A Few Months of Updates



Well needless to say I'm a bit late with an update on the life of Carter but life in our little world has been a bit chaotic since the last time I wrote an update. I found a new teaching job closer to home, Mike is now a partner in the chiropractic office he has been working in since graduating, and Carter is now a two year old full of life and is curious about everything he sees! I will try and breakdown updates as best as I can by months or events and not make this the longest post in history but there are no guarantees.

Summer was amazing. Carter and I had a wonderful time exploring, swimming, and soaking up the sun. When late summer arrived it was time to get back into work and for Carter to begin spending his time with a wonderful caregiver and her son. We lucked out with finding a great woman who is willing to watch Carter which is great for him because although day care was an option, it can get tricky if Carter ever needed to have a catheter or need other care in a center. It's something we are still learning ourselves but for now, we love the setup we have for him.

September & October

These months were pretty low key for Carter in the Spina Bifida category with no appointments, issues, or disruptions in our lives that deterred him from his growth. Carter continued to improve with his walking abilities, and walking independently, he grew with his vocabulary, and enjoyed visiting friends from out of town while tailgating for mom and dad's favorite team. Oh and did we mention, Carter turned two!!! He had an amazing 2nd birthday and was able to spend it with wonderful friends and family who came out to spend the day with him celebrating his life. We had a truck themed birthday and was once again, thankful to have the nonprofit, Icing Smiles provide us with a baker to make Carter's cakes; that's right, his baker made TWO cakes for his birthday and we are so thankful to Sabrina at Eclectic Cake Company in Brighton for providing us with these great looking and amazingly tasting cakes.


I think he had a good time... and got plenty of gifts


Birthday Cakes galore! 
Halloween with his cousin! 

November

November gets it's own month because Carter was busy in the Spina Bifida world. First, we found out that his physical medicine and rehabilitation doctor, Dr. Green, would be leaving Mott. She has been with us since Carter was 8 months old but luckily we were able to see her before she left and get some feedback on his care, where we would go from here, and who would begin to see him once she was gone. While at this appointment, we were told that Carter should get a new pair of orthotics and that the second pair would not go up as high but would be more for supporting his ankles as he walks. At times his ankles give out while walking and he tends to roll them a lot so having something to help support his walking has been beneficial. Dr. Green also and finally might I add, gave the approval for a wheelchair.


Carter's new orthotics. 

I know what some of you may be thinking "but he walks just fine, he doesn't need a chair" or "You said he was walking, why would he need a wheelchair?" All fair questions. Carter does walk very well and is very independent as a walker but he does not have the stamina that a lot of toddlers might have while walking. Imagine this, you're at the zoo and your child wants to get out of the wagon and walk to see the next animal so you let them out, hold their hand, and walk with them. For Carter, he would get out of the wagon, hold your hand, and it would take almost three times as long to walk to the same exhibit because he moves at a slower pace due to his ankle and the fact that he gets tired a lot faster than that of a "normal" toddler walking around. His doctors used to say, "Well he can be in a stroller when you go places that's not a big deal." Oh really? Have you tried to tell a two year old they cannot get out and walk around even though his cousins are? Yea, okay thanks for that. It's been tough sometimes to think about a wheelchair and we really don't believe that Carter will need it all the time or even for a long amount of time but for now, he will need it if he wants to walk for a period of time and gets tired or if we are at the zoo and he wants his own independence and I refuse to take away his independence.

While this is something that we are excited about his finally getting approval it does take some getting used to. I have been fortunate to connect to another mom who has a son with Spina Bifida and she write this amazing piece that has been helpful to not only us, but to friends and family to understand better. Please read below and the link to Heather's Facebook page about her son is below to click on too!

"Why getting my child a wheelchair isn't me “giving up on him.”


"In my son’s lifetime, we have only been told by 1 of his 15+ doctors that he would never be able to walk (just for the record, that same doctor gave us a slew of other incorrect, outdated information, and we haven't been back since that visit.) Noah's spinal defect starts at L2 and goes all the way down his spine, however he has full movement, full feeling, and has all of his reflexes. As nice as that is, the reality is movement, feeling, and reflexes are not the end-all and be-all of walking.

Muscle tone plays a huge part in mobility, and those with spina bifida are prone to low muscle tone in their legs. Noah has low muscle tone in his legs and even his core. He is a chunky little boy, just like his older brothers were (sorry for the crappy genetics, guys.) The difference between him and his brothers is that when they started crawling and walking, they stopped gaining weight and continued to get taller and leaner. Noah is also following this pattern (he is still the same weight that he was last year,) however because of his low muscle tone, it's taking him longer to build up the muscle and strength to walk. He is standing and cruising like an expert now! I, and his doctors, have no doubt that this boy will walk one day, whether that be with a walker, arm crutches, AFOs, SMOs, shoe inserts or independently. BUT the reality is that even when he learns to walk he will likely tire easily. Expecting him to walk an entire day at Disney is not practical or fair to him.

Even more than tiring easily, so much can happen to our children that can affect their mobility, whether this be temporary or long term.

You developed a pressure sore from your bracing rubbing against your skin?

No bracing until it's fully healed.

You just had spinal surgery?

No walking for 4-6 weeks. The list of examples can go on and on…


So why get a wheelchair for a two year old? Plenty of two year olds are still held everywhere they go!

Remember that muscle tone issue we talked about? Yeah, so that doesn't just affect his bearing weight, it also means that he can't help evenly distribute his weight when held. It's like carting a 30lb sack of potatoes everywhere. Noah has a brother that is almost 13 months older than him. Mason weighs 35lbs, and I can pick that kid up all day long without any pain. Picking up Noah for extended periods of time is hell on my back, and if I hold him too much I spend days in pain trying to recover.

Okay, well, why a wheelchair?

When is the best time to teach children a second language? As babies! Bring them up exposing them to that language and it becomes second nature. They will only remember a life speaking both languages and they won't struggle and fight to only use what they are comfortable with. I want Noah (and his siblings) to grow up knowing that the wheelchair is a valid mobility option. I want Noah to never remember a time that maneuvering a wheelchair wasn't a skill he had. Should something happen and he temporarily needs to use it full time, I want him to already be comfortable with it and not struggle with his mobility while attempting to figure out this “new language.”

While we are at home, we emphasize hard physical work to meet whatever his newest goal in PT is. If he wants to watch TV, he stands up while doing it. If he wants to play with the water table in the backyard, he will stand to do so. If he wants that piece of fruit, he is going to crawl or cruise using furniture to reach it. While at home we give him every opportunity to push himself. If we were to put him in the stroller or shopping cart while out, he would just be sitting there doing nothing. By allowing him to use a wheelchair while we are out he is able to work on core body strength, arm strength, coordination, cognitive development, social development, etc. He is learning a new language and having a blast doing it!

How can I be sad that my son is using a wheelchair when I can clearly see how happy he is and how much progress he has made since learning to use it?

The wheelchair is not me giving up on my son, it's me giving my son another tool in his belt to take on the world with."


Mr. Noah William- Facebook Page

Now, after having Heather explain that to you, we are currently waiting for Carter to get fitted for a chair and in the meantime we are starting our own research on what chair would be best for him. We got the call for his appointment in November and it isn't until January 30th. Following that appointment, it could take another 6-8 months to actually get the chair so it's quite the process but one worth waiting for.

On top of one of Carter's providers moving (which we have a new PM&R doctor but have yet to meet him) Carter has his annual MRI done of his brain. This gives us the chance to see how he is doing with his shunt and if there have been any changes. The last time Carter had an MRI he was a little more than a year old and it was a quick scan (about 3 minutes). This MRI would take much longer so he had to be semi-sedated which just means he was given some medicine to make him loopy or "baby drunk" so that he wouldn't move around as much or at all while he was getting the scan.

He did a great job with his MRI and then we met with neurosurgery. It was a great appointment! We were told that Carter's brain and the excess fluid he has looks great. There is a slight change on his left side with fluid but nothing that the doctor was concerned about and they told us that barring any shunt issues Carter doesn't have to be seen by neurosurgery or need another MRI for the next two years!!! Mike and I (and I'm sure Carter) was ecstatic about this news and although the shunt issue is very much alive (see December), this was a very big deal.

Shortly after his appointment with neurosurgery, Carter was seen by urology for his annual check in. This included getting his CMG which is a test where Carter has a catheter inserted and we check his bladder pressure so that he isn't exerting too much pressure and it affects his kidneys. Carter has done very well with this appointment in the past and it's usually the appointment we are the most nervous about. Thankfully, Carter was a rockstar yet again.

Through his CMG Carter's results showed that although he did exert pressure to empty himself, it was not at a level that is a cause for concern. His doctor had explained that his level was around 20 at the most and the cause for concern is at 40, so he is all clear. Due to the fact that Carter has never had a UTI or bladder issues he is cleared to not need a catheter for another year, so long as no UTI or bladder issues arise.

Now, we are still unsure what this means for potty training because we aren't sure if Carter's body will be able to "hold it" in order to use the bathroom. We are currently in the process of getting him on a bathroom plan in order to empty his bowels but even that takes some research and learning but it's something we want to start because the earlier Carter understands this schedule the easier it will be for him as he gets older and we start thinking about school.

Overall, November was successful in Carter's life with Spina Bifida; no neurosurgery MRI's for 2 years and no CMG or catheter's for a whole year, it was a good month of good news :).

December
December started off wonderfully with some great news from the Public Relations team at Mott Carter is officially in the lobby of Mott now! His picture was selected to be the first photo as part of a new display in the hospital. This display is to thank those who donate to Mott over the years and Carter's picture is huge! We are so excited that he gets to be part of this hospital in many ways and that we get to show off that cute face even more :). Here is a picture of Carter's poster as well as the entire display to see! 



The newest display in the lobby of Mott :)

December was quite a month, one we thought would be nice and relaxed but, that hardly seems to be the case.

Towards the beginning of the month Carter had his first temperature, which in all honesty, for making it two years and not having any fevers we were very impressed with. Now you might be thinking, so what it's just a temperature which for a "typical toddler" you would be correct. However, a fever is a sign that his shunt could be malfunctioning or getting infected. This only meant one thing... time to go to Mott again! Mike and I packed up the explorer and made our way to the ER at C.S. Mott Children's Hospital. Once getting there Carter was well taken care of and the series of tests began.

What was unusual about Carter's fever was that he had no other symptoms of being sick other than a temperature; he wasn't throwing up, had no diarrhea, nothing, just a fever and being very lethargic. After a couple of hours at Mott the doctors determined that Carter was getting the same thing that everyone else's kids seemed to have picked up in December which was great news for us! Again, it's either that Carter could be sick like everyone else, or he needs brain surgery, so being like "any other toddler" was good news for us. We packed our things back up, headed home, and although Carter did get sick, like all other children, it subsided and he got better by the end of the week.

We thought that would be our only scare for a while but again, silly parents, we had one more that happened just a couple days ago. Carter had just been moved from a crib to a toddler bed on Christmas Day and all was going well. On the 30th, he woke up in the middle of the night crying so I made my way upstairs to get him back to sleep. Little did I know, in about 10 short minutes puke would be all over Carter, his bed, and me. That's right, our little munchkin decided to let it all go and throw up everything he had in his stomach.

After getting both him and me cleaned up and changing our clothes I took him downstairs and soothed him until he fell asleep. I chalked up getting sick to what he ate for dinner that night. After a lot of hours of tossing and turning, Carter woke up and asked for some water. I took this as a good sign that he was asking for something and got him his sippy cup of water. Bad move. About 3 minutes after finishing his water, Carter crawled over to me, and once again, threw up on himself, the couch, and me. Luckily, it was all water and no food was left but still, not fun at 5:00 in the morning.

It was at this time that I thought something could be up. Carter didn't have a fever, wasn't tired or lethargic, just throwing up. This is another sign that his shunt could be malfunctioning so I changed our clothes, packed him into the car, and again, made our way to Mott.

This trip to Mott took much longer than the first, probably because as tests were happening Carter was only showing one symptom, throwing up. The doctors decided that he needed to have an X-Ray of his head and back as well as an MRI scan to be sure that his shunt wasn't malfunctioning. After a few hours of testing and waiting to hear the results, we were fortunate to hear, yet again, that the shunt (we named Desmond) was still doing his job and had not malfunctioned. We were told that it's possible Carter had at GI virus and had just gotten sick. However, I was told that I did the right thing by bringing him in and that it was a good thing to have brought him in to have those tests in order to check and make sure he was okay. I was thankful to hear this because it's tough sometimes to know whether or not you're doing the right thing or overreacting. I'm glad I took him in but having that reassurance was comforting.

After 7 hours of being in the ER it was time to go home. Carter and I enjoyed the rest of the day and weekend spending our time on the couch drinking Pedialyte, resting, and watching lots of Mickey Mouse Clubhouse. 

December was an eventful end to our 2016 year but overall Carter's year when it comes to Spina Bifida was a good one. For now we are enjoying our New Year and waiting for the wheelchair appointment towards the end of January, which will most likely be the next update. Happy New Year everyone! 

Carter LOVES Santa Clause.





Tuesday, July 19, 2016

Carter's first EEG

It’s been quite a summer for Carter, one of the benefits of being a teacher is the fact that I get to spend my summers with him and boy, have we been using our time together with a lot of activities!

Now that Carter is older he would need to have a schedule jam-packed with things to do or else our summer would be pretty boring sitting around in the house, and I planned away. Tuesday-Friday we have something planned in the morning; between gymnastics, outings around town, early on group play time, or bouncing at sky zone, Carter is always on the move… I mean would we have it any other way?

So far this summer Carter has painted t-shirts for the 4th of July, picked strawberries, hung out with his buddies at the balloon fest, enjoyed time swimming, been to birthday parties, and of course, has taken a trip to Mott because what would be summer without going to our second home? ;)

 
At our last trip to SB Clinic we had mentioned that there are times during the day that Carter kinda goes crossed eyed and stares blankly. He has one eye that goes in while the other stays straight and he gets this glazed look. One thing that we noticed is that even when this happens Carter continues to do whatever he was doing before (eating, playing, etc.) and when we call his name, snap, or clap he “snaps out of it” and then moves on.
We addressed our concern about this because honestly, we didn’t know what was happening and if this is a normal kid issue with their eye muscles and still gaining strength or if it’s a SB thing. Carter’s Neuro doctor told us that it could be minor but (naturally), it could also mean that Carter is having seizures when this is happening. He informed us that we would need to see Neurology and make sure that we can cancel out the scare that was “seizure” and see what’s going on.
That appointment was in May and we didn’t get a phone call until the end of June to see Neurology “as soon as possible”.  We were there within two days and met with the neurology team. I explained to them Carter’s ENTIRE LIFE STORY before getting to the problem at hand; this spacing out that has been happening. I was more than happy to share his story (obviously, I’m blogging) but was more nervous about this whole seizure issue and wanted to figure out what was going on.
After talking to all of the doctors about the “spacing out” I heard some good news. Just like our neurosurgeon had stated in May, they don’t believe it to be seizures, mainly because Carter continues doing things when his eyes space out (ex. He keeps eating) but they want Carter to have an EEG (electroencephalogram) to rule out seizures for sure. Another thing they discussed was that Carter’s eye muscles might be weak which is causing this to happen, so they recommend that he also goes to the Kellogg Eye Center to see what might be happening. We were told that after his EEG (whenever scheduled) we would only get a call or need to be seen if something was abnormal with his test. I thanked them for all of their help and information and we were out the door, waiting on the call for when he would have the EEG.
Testing day didn’t come as fast as I had thought it would. In fact, the Kellogg Eye Center wasn’t even available until the end of August and that was at their Ypsilanti location; the farthest away from us. Ann Arbor was booked until October and Brighton until November, and because I want to know what’s happening we went for the end of August. However, we are also looking into getting him into another eye doctor that can see him quicker so I can have a little piece of mind and if there is a problem, figure out a solution sooner rather than later.
EEG day was schedule for July 18th. This is Carter’s first EEG and for those who may not know exactly what it is, an EEG is “a test used to detect abnormalities related to electrical activity of the brain. This procedure tracks and records brain wave patterns. Small metal discs with thin wires (electrodes) are placed on the scalp, and then send signals to a computer to record the results.” We made our way to Mott, all the way up to the 12th floor, checked in, and waited.


 A short while later we headed back to the room and Carter had to be hooked up; not as fun as it looks people, and I know from the pictures, it looks so fun ;). The technician was really great and she showed us and Carter what she had to do on his hand before getting started with his head; it’s pretty intense. Carter had to have 25 marks on his head, followed by a glue type of substance on all of those marks, then hooking the wires at each of those sections, taping the wires down, and wrapping his head in a mesh in order to make sure he doesn’t grab the wires and rip them off of his head. It took about 30-40 minutes to get this all set up, and then the actual testing began.


Once Carter was all set the test included two different parts: Part I was a strobe light that went off every ten seconds while the wires tested how his brain reacted. The strobe light got faster with every 10 second span. It was like this… dark for 10 seconds, strobe lights for 10 seconds, and repeat with the lights getting even more like a club on a Saturday night. We were told that kids either love the lights or hate them, and luckily for us, and Carter being the dancer her is ;), he LOVED the lights.



After the strobe light test we had to try and get Carter to continue to lay still and possibly fall asleep to see what happens while he is sleeping (Part II). Needless to say, that didn’t happen. Mike and I tried a lot of different things to get him to relax and go to sleep but at 10:45 in the morning (only about 2 hours after waking up) but it didn’t really work out in our favor. However, we were told that what they had was okay and if they needed anything else they would give us a call. Once the testing was over, it was time to take it all off! Carter was a trooper, he allowed us to take off the helmet, wipe down his hair with a special liquid so it wouldn’t pull out his hair, take of all the wires, clean all of his marks, and essentially get a shampoo while at the hospital. We were told that they will take a look at the results and if something should appear abnormal we would get a call.

Naturally, Carter’s eyes didn’t do the “space out” while we was getting testing but we figured if something was abnormal it will show regardless of what his eyes do while we were there. Of course he “spaced out” like 4 times while we went to eat afterwards but hey, you can’t control Carter and this was a perfect example J.

For now, (story of our lives) we wait to see if we are contacted at all about the test results. If we don’t hear anything then we are to assume it’s not seizures and he needs to see an eye doctor. In the meantime, Carter and I will continue to enjoy our summer time together and the many adventures we can have!









Tuesday, May 31, 2016

19 Months and a Visit to Mott

Well, we officially made it a whole four months before having to make our way back to Mott for appointments and clinic. I am so thankful that everything has been going well with Carter’s shunt, Des, and that we haven’t needed a reason to make our way to the hospital. Carter has continued his physical therapy both with Mott as well as the Early On Program and has surprised everyone at therapy with what he can accomplish, but it was the doctors turn to see how things have been going since our last clinic in November. These are always long, busy days so I was very thankful to have Mike with us this time around.

May 19th was our clinic day and it was more of a check in with Carter’s progress because there wasn’t a need for tests to be taken due to the short amount of time he had had with majority of his tests (CMG in January, X-Ray’s in March, and MRI in November). We made our way to the 3rd floor, checked in, and waited for our name to be called. Fortunately, this time around, we decided to bring one of Carter’s toys with us where he can walk around the halls, and it paid off. Carter was totally in his element and loved walking up and down the halls and trying to get into other patients rooms too ;) which just meant that we met that many more Spina Bifida families and kids and Carter made some new friends!
At clinic we typically see Neurosurgery, Physical Medicine, Physical Therapy, Occupational Therapy, Urology, and now we also see a couple of people who deal with his medical equipment. We were in our room by 8:45 and out by 11:00 so it was a very successful day time wise but a lot of new information when it comes to Carter and his care.
First up was Neurosurgery and overall it was a great check in. Carter showed off his skills on pulling to stand, squatting, and then grabbing his walking elephant and walking right out of the room while we were talking to the doctor (he clearly was not interested in our conversation). He was very impressed with what Carter was doing and then asked us how he was doing developmentally and what we were noticing with his shunt. Developmentally we explained that Carter is actually above his age in almost all categories except for gross motor skills (naturally) and he was very happy to hear that.
 Carter's elephant chair and push toy we brought with us... Here he is pushing is cousin Eli!
 
We talked about his level of function versus his level of sensitivity and how we as parents should be trying to figure out the different between the two. We are aware that Carter’s level of function is pretty high as he can walk around without braces (needing something to old onto), but that his level of feeling might not be as strong. With Carter exploring more and becoming more mobile he also tends to get some cuts on his feet, and we mentioned that he doesn’t seem to feel these or respond to getting the cut or respond to us trying to clean and check it. We were told that we might not know about his feeling until he is able to tell us what he can feel and what he cannot. For now, we just keep trying different things like tickling his feet, rubbing the tops and bottoms of his feet and toes, and hope that he responds to our touch but for the most part, he only notices because he can see us do this. As he gets older we will obviously know more.

From there we asked the doctor about something that Carter has done since he was about 7-8 months old. About two-three times a day Carter tends to “space out” and it looks as though he is in a daze. One eye sometimes looks crooked while the other looks straight ahead. He never freezes when he does this (for example if he is eating he will keep eating but look “out of it”) and it was something that we wanted to ask about. We were told that it’s possible those little space out looks could be seizures. Now, as soon as I heard that I was terrified. How could I not know that those could be seizures and affecting him?
Luckily, the doctor made me feel a lot better when he explained that a lot of babies do that as they are learning how to wok different parts of the body, and the fact that Carter continues what he is doing when he spaces out (like the eating example) are all good signs. However, he did tell us that he wants Carter to be seen by Neurology just to rule anything out or to at least figure out what is going on. We have yet to hear from Neurology but were told that it was not an emergency situation and so long that his shunt is doing its job and he isn’t having a malfunction or infection all is well. The next time Carter would need to be seen by Nuero. Is in November when he needs his annual MRI.
After Neurosurgery we met with the team of Physical Medicine, Physical Therapy, Occupational Therapy, and our Medical Equipment peeps; it was a full house. Again, Carter wowed them with walking around with his toy. Dr. Green (physical medicine) had asked us if we could put Carter’s braces on him so she could see him walk around with the braces on. Remember, that at our last appointment with her she had said that he had Tibia Torsion so she wanted to see if his braces and twister cables (not really cables, more like Velcro that wraps from his waist and around his legs to his feet) were helping at all. After getting them on his feet (it’s like wrestling a Marlin) he walked around and immediately Dr. Green noticed that not only was it not helping his right foot and the torsion he had, but that the braces were affecting his left foot in a negative way too. She didn’t like that the braces seemed to slow him down and that she thinks he does better without them than with them. However, she did explain that because his right foot is not going to fix itself like she was hoping, another surgery is in Carter’s future.
Standing all by himself, checking out the construction outside :)

Dr. Green explained that this surgery isn’t something that would happen until he was at least two years old as both herself and orthopedic surgery would want to wait between the ages of 2-3. She told us that this is a painful surgery as doctors would have to break his bone, set it in the correct position, and then cast it. From there Carter could not bear any weight on his leg (because it’s not happening right now we didn’t go into detail about how long that would be), before getting into a boot, starting physical therapy, being fit for new braces, and then starting to use the new braces to help with his leg strength and possible walking independently. She told us that as he gets close to the age of two she would contact orthopedics and get us scheduled for an appointment to get the ball rolling. It was hard to hear that Carter would need another surgery, but ultimately we were happy to hear that once he has the surgery his chances of walking independently and having the strength to hold himself up would greatly increase.
After hearing this and going home Mike and I thought that it would be best for Carter if he had the surgery in the beginning of winter because he wouldn’t be missing out on being outside when it’s nice, I would have both Thanksgiving and Winter Break to be home with him, and overall we just thought that winter would be better off for all of us and hopefully give him the chance to heal, start physical therapy, and be ready for summer when it came. We still won’t know when exactly this will happen but understand that we will meet with ortho. In the fall.
Carter's first Tiger's Game, we can't have him miss out next season!

Physical Therapy and Occupation Therapy were very happy with his progress and we were told that for now, until his surgery and recovery he only needs to have PT once a month. He is crawling, climbing, standing, and walking with support and we are working with him at home so meeting once a week isn’t necessary. After surgery, a new schedule will be created for him as well as him getting his second set of braces.

While everyone was there we got the chance to talk to our medical equipment gurus and they had explained that because Carter is doing so well with mobility we can take his gate trainer apart and turn it into a mini walker that he can just push while he walks around, just like he does with his toys in the house. It was so nice to hear that we wouldn’t have to sit him in it because Carter had started to take that seat for granted and just sit and push his legs to slide around the room and not actually walk to get there (lazy baby haha). They broke it down for us right then and there and told us that if we ever needed to add anything back onto it we could because, thankfully, all of the pieces come on and off easily. They also told us that once Carter has the surgery and if he is walking well we could get an actual walker ordered which is much lighter and can fold, which his current gate trainer cannot and is SUPER heavy.
After all of the talk of mobility had ended and we had all of our questions answered they told us that we would be seen again in the fall and that we would be informed about our meeting with ortho. Until then, Carter was a happy, moving kid, and they were thrilled to see how well he does without any support!
Our last stop of the day was with Urology, the always terrifying check-in. However, this time around there wasn’t too much to worry about because he had done so well with his tests in January. We talked mainly about his bowel control, trying to figure out what dosage of Mira lax is best, finding that happy medium with the meds, and when to start a bathroom schedule. For those who don’t know, a lot of parents of kids with SB when they talk to each other, all conversations lead to poop, it’s just the way it is. There are so many kids who do things so differently and so parents talk to try and figure out what other people are doing, what they kids are going through, and new strategies to try for their own kids to help with this area.
I’m not going to lie, it’s a really hard thing to figure out and we are just in the beginning of it all; Carter will have a lifetime of trying to figure out what the right amount of meds are needed and what type of bathroom schedule to have, and these bathroom schedules are no joke. Kids start with a very strict schedule on when they go to the bathroom to help relieve their bladder or bowels without it becoming more of a health issue. Some kids need an enema once a day to help empty themselves because they can’t do it on their own, and that’s something that Carter might need. This can be done in the morning or before bed and creating a schedule and routine for these kids is extremely beneficial to keeping their systems as regular as possible while also staying healthy.
For now, Carter gets Mira Lax every night before bed, and before his baths he gets an enema so that way he can empty everything out and doesn’t have an issue of pooping in the tub (which does happen every. Single. Time if he doesn’t get the enema). Recently, we have been giving Carter the enema in the bathroom and he sits on his new toilet (kid’s seat) and will go there while we cheer for him and also tell him its okay if he cries because it hurts him, and believe you me, it does hurt him to go. As he gets older we will have to establish our own bathroom routine and decide what the best course of action will be but for right now, I just enjoy getting the chance to talk to other moms who have gone through, or are also starting to learn what this process is like for our kids. Not everyone wants to talk about poop for hours so it’s nice to have a support system and moms who are willing to talk poop because it’s a big part of what SB is an how it affects our kids.
Urology told us that Carter doesn’t need to be seen until November for another checkup and that his next tests wouldn’t be until that time or even in December but that with everything going so well in January he was good to go.
On our way out, I realized that so long as Carter continues to do well (praying always), we won’t have to go back to Mott for another appointment for another 6 months! It was such a relief that everyone was happy where he was at and that we could take a break for a little while. In November it seems like we will have some pretty big fish to fry with MRI’s, CMG’s, and meeting about another surgery but for now, Carter, Mike, and I are going to enjoy this sense of summer freedom and pray that we won’t be back at Mott until that checkup, which is good because Carter has a big summer ahead of him with bounce (tony tot gymnastic class and trampolines) class, swimming, physical therapy, and outings each week.

Summer… here we come!



Wednesday, March 9, 2016

CMG Day & Hip X-Rays

Towards the end of January, Carter had an incredibly important appointment; urology, the one appointment that I have come to dread. This is the appointment where Carter gets an ultrasound of his kidney's to be sure that they are looking good and healthy, are the right size, and are not getting infections, which can cause serious issues. From the kidney ultrasound we head to the 4th floor to see Carter's doctor in Urology and Carter gets a CMG.

For a CMG, Carter has to have a catheter put into his body and then fluid (like saline solution) is input into his bladder to see if he is able to release all of the fluid out on his own as well as checking the pressure he exurts on his bladder. If Carter cannot release all of the fluid out it can cause an issue which would mean he would need a catheter and if he uses too much pressure while pushing, his bladder could explode which is a major issue and can cause weeks in the hospital.

The last time Carter had this test done he HATED it. I don't mean he was a little squirmy but got used to it, I mean he was moving everywhere he could, the catheter was falling out and had to constantly be put back in, he was hungry, tried, and overall hating life at the time, and I couldn't blame him for that. I wouldn't want people doing that to my body either! For his first test we were told that his bladder pressure levels were pretty high and that it might be a cause for concern. I was told that if at his next appointment the numbers didn't go down, it would be more than likely we would have to start cathing him and to be perfectly honest, I'm terrified of that so this appointment, I was petrified.

However, this time around, Carter was AMAZING! Now by this time in the day, he was pretty tired and luckily I had his sippy cup and some vanilla wafers for him to enjoy (what a miracle those little cookies can be). As he lay there he didn't even flinch when the nurse put the catheter in and then started to set everything up. He continued to lay still while he inserted the fluid and was completely still for almost 10 minutes while completing this testing which I was really hoping would be a good thing. In my mind I figured, the first time he was squirmy, so maybe that's why the numbers were so high and if he's calm today it's possible the numbers could go down... right?

The nurse pulled out the catheter, and told us that he could relax until his urologist came in to talk to us about his results of both tests. We spent another 10 minutes or so listening to music and reading books until we were greeted by the doctor. We said our hellos and got right down to business, this was it; was it time to cath?

Waiting for our results! 

His kidney's looked great! They were a good size and although one kidney is a little larger than the other they are working well, fluid is going in and out of them well, and she was happy with his kidney function, one sigh of relief. Then it was time to talk about the CMG, here is goes...

His test was PHENOMINAL!!! His doctor was so impressed that his numbers had gone down so much. She said that she had no idea how they went down as much as they did (his first round numbers were about 30 and his highest number this time around, was 12), but that she was so happy to see that he isn't using too much pressure to pee on his own. This was such a relief to hear because it means that Carter, for now, can continue to be Cath free! I may be overusing my exclamation points right now but I do not care, this was a big deal for our family and for Carter and I was thrilled that it had gone so well. In fact, it was better than that because we were told that, baring any UTI's (which he has never had) he doesn't need to be seen by urology for a year!!! That's right, Carter is Cath free for one more year and (we continue to pray) that at his next test in about 10 more months he will do amazing once more, but until then, we will celebrate this huge victory for Carter and let him continue to pee in his diaper like any other 16 month old child would do.

Just last week Carter had another big appointment; Physical Medicine & Rehabilitation. Mike was lucky enough to go to this appointment and to talk to Carter's doctor about his leg mobility and function and to see where we need to go next when it comes to moving and possibly walking. Carter does have his own gate trainer that we can strap him into and he walks around and he loves it. I think getting the chance to walk around and to not have to hold onto things gives him a sense of freedom around the house.

Carter & his cousin, Eli playing at the gym :)

At his appointment we had to discuss the fact that Carter's braces aren't really working for him. His right ankle twists in so much that when he stands you would think his foot is broken, even with the braces. It's not actually clubbed but instead he has what is called, Tibia Torsion. The twisting is coming from his knee which causes his foot to twist inward. The braces do not help keep his foot straight and when he crawls in them or tries to stand, his right heel doesn't stay down into the brace and eventually they slide right off. Basically, it doesn't help stabilize his legs to help him stand up without holding onto anything which is what we are trying to work on.

He currently pulls to stand up without his braces, can walk along the furniture and tables without his braces, and is getting a little daring by trying to let go of the couch while he stands; which he holds himself up for about 2-3 seconds before falling on his butt.

Just brushing his teeth against the couch

At the appointment we were told that with Tibia Torsion it either fixes itself or surgery would be needed. However, with Carter being at such a young age the doctors would like to wait and see if this will fix itself because the surgery is long, painful, and Carter would be in a cast for quite some time, which we don't want to have happen so for now, we wait. In fact, we were told that if he didn't have this issue he would probably be walking right now, which is great that we hear how much the doctors believe he will walk independently but also is a bit of a bummer because we wish, for him, he could be doing that now.

At this appointment we were also told that because Carter hadn't had an X-ray of his hips done since birth, he would need another X-ray to make sure his hips are not popping in and out of the sockets. Mike had to take him to get it done and I was told that Carter was not a fan of this at all (again, can you blame him?). We got a phone call the next day and were told that his hips look beautiful and that everything looks great, no issues when it comes to the hips.

In the meantime we are going to have to come up with a plan with Carter's PT to work on a way to get that knee and foot to straighten out and to help teach Carter how to "fix his foot" when he is sitting, standing, or walking in his gate trainer. Luckily, he has learned how to "fix your feet" when he is sitting and he pulls his legs out from under him to sit with his legs in front when we ask him to. The rest, we hope, will come in time.

 
Relaxing in his chair

Saturday, January 9, 2016

Surgeries, Splints, Braces, and Birthdays

Okay I have to admit, I have been AWFUL when it comes to my updates with Carter and how this SB learning process has been for us! I apologize for those who get their news here. I think once school started I got into the teacher/mom mode and have been trying to figure out how to balance it all and the blog fell at the wayside :(, it will not continue because there is too much to talk about and updates to be written.

This blog is going to be VERY long but it will be broken up into four pieces so you can jump around to what you would like to read. So much has been happening in the life of Carter.

Surgery

On August 25th, 2015 Carter had this third surgery for a hernia. I still cannot believe that before turning 1 he has already had 3 surgeries although I’m not one to complain because I know of families whose children have had to endure much more.

Carter was a trooper; we arrived early in the morning and got all checked in. He couldn’t eat before his surgery and handled it much better than I ever thought he would being 10 months old. He was put into his little gown and we played with him while they took his weight, measured him, and checked out to make sure his temperature was good.

Once that was complete he played some more while we waited, and waited, and waited, and then he started to get hungry. It was pretty brutal for a while and it turns out that one of the previous surgeries took longer than expected so Carter’s was pushed back. The nurses were amazing though and entertained him when he started to get upset.
   
Hanging out in pre-op
Finally, we got the okay that he was up so they gave him some medicine to help start to make him a little sleepy. He HATED the medicine and after we tried getting him to take it all, he threw it all back up. Fortunately (and I’m still not sure how) some of it still got into his system and within 5 minutes he was a loopy little baby. It may not sound the greatest but imagine a drunk person trying to walk a straight line and that was Carter trying to crawl around the bed he was in, poor guy.

Eventually he just laid down and Mike and I said our goodbye and he was wheeled into the O.R. this time around wasn’t as bad as his shunt surgery because let’s face it his first surgery post birth was brain surgery, a little nerve-wracking to say the least. We were given our beeper and login so we could get messages as to how he was doing in surgery and how much longer he had to go.
Our pager to receive information during surgery

Surgery took about three hours when it was all said and done; prep, surgery itself, and post OP. Our beeper went off and we were able to talk to the surgeon about how it all went. His surgeon is a wonderful man and was very kind when he spoke to us. He also used layman’s terms which made it a lot easier to understand what had happened and what he did while in surgery.

Carter had a hernia in his lower left abdomen and we aren’t exactly sure how it happened but luckily it wasn’t anything that was too serious or crucial to his health. However, it needed to be repaired and the doctor was glad we had it done when we did. Carter also had another issue going on during surgery but due to him getting older one day and not wanting everything posted on the internet I’m going to leave that part out ;), he is already going to be embarrassed by me, no need to make it worse. When the doctor was talking he had told us that surgery took longer than expected because there was a minor issue. Apparently when the doctor was opening Carter up and started to work on the hernia his shunt tubing fell down into the hole of the hernia (eeekkkkkkk!!!!). I couldn’t believe that happened, and he said that he was happy it happened while in surgery than out while Carter was playing because that could have become a serious issue with his shunt and getting an infection. Moral of the story, if you’re going to have something go wrong with your child’s shunt it’s better that it happens while in a surgery.

After speaking to the doctor we waited for Carter to wake up from his surgery and start to feel better before heading to post-op. That took longer than we thought but we knew that figuring out Carter’s pain medicine can be tricky so we waited it out. Eventually we were taken back and he seemed to be okay. He was fussy (I mean its surgery, who wouldn’t be?) and wanted to snuggle so obviously I did. We were there for about an hour before we were told that he was getting the okay to come home. He would need to be watched closely for 48 hours to be sure there wasn’t any sort of infection of any kind and that he would be sore and groggy but would start to feel better. We got his dressed, check out, and headed home; Third surgery, another success.
Just waiting to go home

Splints

Shortly after his surgery Carter had to get a splint for his right leg/ankle/foot. His right side turns in quite a bit and both his physical therapist (PT) and physical medicine doctor (PM&R) had said that perhaps wearing a splint at night might help correct his foot and how much it turns in. Honestly if you saw him standing you would wonder if his foot was broken with how much it faces in towards his body. I don’t know how he does it, but it never seems to bother him and even when we try and move his foot so it’s facing the right direction, he moved it back. I digress.

Once day after school Carter and I headed to where he sees his PT to meet his Occupational Therapist (OT) and get fit for his splint. It was a quick process and he did a really good job at sitting still for about 15 minutes while she got him fit for his splint and tested it all out. I was really impressed that he was so great just sitting there because he didn’t have any toys around him or food… and we all know how much he loves his food ;).

His OT made the splints right in front of us. It was a really cool process where she actually melts the material into hot water and can move and shape it so it will fit his leg/foot. She worked on that for a while, had him try it on, and we were good to go! I was told that he should only wear it at night because it’s not to help him when he is moving or crawling around, but just for helping with that turned in foot so if he wore it sleeping that would benefit him the best.

Before he wore it to bed we did have to test them out to make sure it wouldn’t cause too much discomfort so he had to wear it for about 20 minutes, take it off and check for red marks. If the red marks stayed for longer than 10 minutes then something wasn’t fitting well and we had to get it fixed. I had him wear them from the office back home and then checked for marks. Luckily he only had some marks from it rubbing a little on his leg but they went away and I had the green light to put it on him before bed.

Bonus, I don’t think Carter even recognized that he had a splint on. He just kept on living life as if nothing was on his leg and it did seem to bother him while he rolled all over his crib while we slept. After about 3 weeks of wearing the splint to bed we started to notice, as did his PT, that his foot started to turn out more than it had before. It wasn’t a huge change but a big enough change that made a difference to help him with his standing.

Working on our standing!

As he’s gotten older it is really easy for him to take the splint off because it’s only being held to his leg with Velcro and he just pulls off the tabs and then pulls it off. We are trying to figure out what else we can do to keep it on and have only come to the conclusion that we can try and put it on him after he falls asleep and if he takes it off in the morning that’s okay because he can’t wear it awake anyway! As he gets older we will have to get new splints because he is growing and will outgrow it but for now, it seems to be doing some good.

Braces

Shortly after having the splits made our PM&R told us that it was time to talk about getting braces made. These would ultimately help Carter with his standing and walking to make sure that the braces help hold Carter’s body weight up and help support him when he is learning how to stand, walk, and take steps.

We were first told that it wouldn’t be until he was 18 months to have that talk, but after an appointment with PM&R she was so impressed with the fact that he could pull himself up and stand holding onto something that we needed to move forward with getting him fit with braces to help support him in moving forward with moving forward :). We made the appointment with orthotics and prosthetics and a week later, Carter was being fit for his braces. The woman we worked with was great with Carter. She measured his legs and feet and made a wrapping of his legs and feet to get a mold of what they need to make. Carter did a nice job with this and didn’t fuss or move around too much which was good because if he moved around too much then we would need to try again.
The mold for his braces

Braces are tricky because even though they are made for right now they are supposed to last about a year to a year and a half before he will need to be fit with a new pair. While we were there I got the chance to pick out his colors for his braces. There are two different colors you have to pick; the brace itself and the color Velcro that would wrap it around his legs to keep them on him. I looked at the different colors and patterns and eventually came to the natural decision I figured I would; maize and blue.  We picked yellow for the brace and then blue for the Velcro pieces (check them out below!), and I’m so happy with what we picked because they are sharp looking on Carter. Another piece we had to talk about what whether or not to put non-slip pieces at the bottom of the brace. This would be for the point where Carter is standing or walking and making sure that he doesn’t slip and has a good grip on floors, especially hard wood. Without hesitating I said yes to non-slip braces because the last thing I need with a kid who has a hard time holding their own body weight up are braces they slip and fall with.

After getting wrapped we were told it would take 2-3 weeks before they came in and then we would have to make another appointment to come in, have Carter test them out, and make sure that they felt right and didn’t need to have any changes made. While we waited Carter continued to make strides with his standing and actually bouncing while he stands without braces or any type of support. I was thrilled to know that he could do that and that his body had the strength to hold him up because as we all know, Carter loves his food and is bigger than most kids his age haha.

Eventually I got the phone call that the braces were ready and we made an appointment to check them out. Carter was amazing, again with having them put on for the first time and letting me learn how to put them on him too which by the way, is a lot harder than it looks. Even today it still takes me a while to make sure they are on correctly without his feet slipping out and even though I know he gets frustrated he sits there for me and lets me get them on him. We practiced this for about 15 minutes while the woman who was working with us made sure that they fit alright. They were a bit longer then they needed to be so she took them to the back and had them trimmed, an easy fix. We were told the same as the splints, wear them for about 30 minutes and after you take them off check to be sure he doesn’t have any major irritation. If he did we would have to have them altered or a new pair made. Once braces are made we have 90 days to have something changed or fixed if it’s needed but if it’s past the 90 day mark you have to have a new pair made; definitely not something to screw around with.
Ready for our maize and blue braces!
 
We left with the braces in tow and were told to have him wear them for about an hour a day so he can get used to how they feel and continue to check for any irritation. As we started to have him wear them throughout the weeks we learned more about them and Carter using them; More to come about his braces when I have an update about our Spina Bifida clinic.

Birthdays

Well I am obviously late with this post but it finally came, Carter’s first birthday and very first birthday party! I could not believe that the day was already here because I feel like it really snuck up on us. October 10th happened to be on a Saturday this year which was perfect because we were able to plan his very first party on his actual birthday. Having an October birthday we weren’t too sure how the weather would be (being in Michigan it can seriously be 75 degrees one day and 30 the next, it has happened.) so we had to plan for an outdoor and an indoor party. Luckily for us, October 10th was a beautiful day and we were able to hold it outside/in the garage for everyone to enjoy.

When we were planning the birthday party we weren’t sure what type of party to have. A first birthday is a big deal and when you’re a kid like Carter and you’ve already seen three surgeries, it better be good. On the flip side, we didn’t want to get too out of control because we know that Carter won’t remember this birthday and we want to save a lot of our energy for birthday’s he will remember and want a theme for. After talking about it Mike and I went with the one theme that seemed fitting for our little victor; a Michigan themed birthday party. It was incredibly simple to put together with the football season in full gear. We picked up Michigan items from the grocery store, made a birthday banner of Carter’s monthly pictures leading up to his birthday, and decided that we would have a burger bar for everyone who came along with a kids menu for the little ones who would be joining us at the party.

Another big part of a first birthday is the cake and I am no baker so I started to research a good place for a birthday cake and happened to run into an amazing opportunity. There is a non-profit foundation called Icing Smiles (icingsmiles.org) and they make cakes for children like Carter and for children with much more serious diagnosis. Once a year until the age of 18 kids can receive one cake a year so I thought, why not give it a try?! I filled out the paperwork and waited to hear back. Within a week I heard back and was asked to talk about what type of cake we would like. I said that we were having a Michigan themed birthday so yellow and blue and that we would be good with chocolate and vanilla. I assumed that it would be a sheet cake with the amount of guests that we had and that would be perfect because it was something I didn’t have to worry about. I was matched with a baker named Holly and she would deliver the cake the morning of the party.

We sent out the evites and made sure everything was in order for the party. Once Carter went to sleep, we got to work. We put together the tables and chairs, hung up the banner, and made sure all of the food was ready to go for the next day. I’m the type of person who would rather get everything done at night and not have to worry about it in the morning and it’s a good thing we did everything at night because trying to get ready for a one year old birthday party with a one year old is not as easy as one would think ;).

In the morning Mike and I both greeted Carter and attacked him in kisses for his birthday. We fed him breakfast and each took our turns getting ready for the party. We set up the food, opened the garage and started to make sure everything was in place before people arrived. It was a beautiful October day, about 67 degrees and not a cloud in the sky.

About an hour before the party started Holly arrived with Carter’s cake and WOW, it was better than anything I could have imagined. She did an amazing job with this birthday cake. Words can truly not talk it up so instead please enjoy the pictures of the cake that Carter had. I am so thankful to both Holly and Icing Smiles for helping us and creating a beautiful cake that we will remember (even if Carter doesn’t) forever.
What a cake!

The party was a hit and Carter had a great day. He played with friends and family, ate lots of food, and enjoyed his very first birthday cake. Although he didn’t get too messy (the cake was fondant so no opportunity to get frosting everywhere) but he LOVED the taste of the cake. Once he was cleaned up of cake and put into comfy clothes he was worn out and took an almost three hour nap; basically sleeping through the entire party but hey, that’s what first birthday parties are for, right?! We continued to spend time with friends and family and truly enjoyed a great day with so many people who were there to celebrate Carter’s first year of life. Plus, the Michigan theme birthday is now done… until (hopefully) Carter wants another Michigan themed party, but we will see ;).
  
 Tasting cake and loving on friends :)
                                                    Making friends at our birthday party!

After Carter was all tucked in and went to sleep for the night, I looked back on the last year and what an adventure it had been. We could not be any luckier to have Carter as our son and even though we weren’t expecting the story that we have, I wouldn’t change a thing. This is the life that our family is meant to have and Carter has changed our lives for the better. I can’t wait to see what the next year has in store for us.