Saturday, November 19, 2016

Brace Yourself!

Sorry, I couldn't resist that one. Some of you may know that Salem has been in a brace since September.

Her doctor has wanted her to have a break from the cast for a while now, to allow her ribs and chest to grow uninhibitedly. In August, after her spine had measured at about 32 degrees at the previous appointment and 37 currently, we finally decided that she would have the cast removed and be fitted for a brace. She spent two weeks with nothing holding her little torso while we waited for the brace to be shipped. Initially, she had trouble walking straight without the cast and treated upper-body movements as if it was still there.

 Wearing her brace out right after having it fitted

At the beginning of September, Salem got her brace. It took her almost no time to get used to it, and only asked once or twice for us to take it off. She really adapted well. For two months, she has worn the brace for most of the day/night, getting a small break in the morning and one in the evening after dinner.


The decision we had made was for her to wear the brace for two months and then take the next step based on the results of a new X-ray. If the X-ray showed her curve had not changed much, we would have a new cast placed that visit. If the X-ray showed the curve had improved, we would keep the brace for a bit longer. So, she slept without the brace the night before the appointment earlier this month to give her spine time to relax. We drove to New Orleans way before the sun rose since it was possible casting would be done that day.

Her X-ray showed her spine at 26 degrees!!

The right X-ray was from September after having the cast removed
The left X-ray was from November after being in the brace

So we skipped the cast and we'll have another appointment in January to check it again. This was such great news, and we're optimistic that God is allowing her spine to be completely corrected by these treatments.

Thanks again for all the prayers and support!

Jenny

Enjoying a brace break

Friday, June 17, 2016

Cover Girl

During Salem's February casting, Dr. Accousti had mentioned the possibility of someone contacting me to do a story for the hospital newsletter. I was interviewed a few months later and told that Salem's story would be featured as part of a story about the advancements in scoliosis treatments. She also enjoyed a fantastic water-filled photo shoot! We have been so thankful for Children's Hospital in New Orleans, and of course, our doctor and his staff. Mehta Casting is not a new treatment method, although it is not well known since it seems people are not as familiar with Infantile Scoliosis. However, the waterproof material is new and has been used here first. We are hopeful that more surgeons will become interested in learning more about it so that other kids like Salem can eventually benefit from this material. You can look back through my older posts to read Salem's full story. Or visit here for more information and history on Infantile Scoliosis and Mehta Casting. Pictures of the article for the New Orleans Children's Hospital's Small World are below. Thanks for following our journey!











Here are a few other pictures from the photo shoot that were our favorites!








Thursday, March 3, 2016

A Look Back at this Past Year

A year ago, I brought up to the pediatrician that Salem's back looked funny when she sat.
A year ago, we waited over a weekend that felt like an eternity to find out what the X-ray showed.
A year ago, we found out Salem has Infantile Scoliosis. A diagnosis that I now know could cause deformity, organ damage and could ultimately lead to a shorter life-span - if left untreated.

We had a normal casting appointment at the hospital this past Monday. However, Dr. Accousti wanted to do an out of cast X-ray so we could see Salem's progress, something we've only done one other time 6 months ago. He had mentioned the last couple of visits about the possibility of a break, some time out of the cast, and we were waiting to see the progress of this X-ray before we made the decision. A break sounded like a good thing, but I was nervous. I didn't want her to have a break for a month or two only to have to put another cast back on and confuse her. A technician came to the room to cut the cast off and she stayed much calmer than I expected. She went for the X-ray, then we waited in the room...for a while. As she sat and watched TV, she wiggled and squirmed not knowing how to move. She acted unsure of herself. When I touched her back, feeling her spine, she jumped from the sensitivity I suppose. The only thing that has touched that skin for almost a year has been a cast.

The nurse came back in and said we would re-cast. We wanted to see the X-ray but I was a little releived that I wouldn't have to make that hard decision, or worse, disagree with the doctor's. Dr. Accousti waited for us downstairs and I was able to see the X-ray. (See all below.)


Salem's first X-ray about a year ago, February 2015, with a 62 degree curve.


Salem's first out of cast X-ray, August 2015. She was already on the loopy meds so had to get it sitting down. Curve was around 50 degrees.


Salem's out of cast X-ray standing, February 2016, showing about a 32 degree curve.


To show correction to date, right is Aug 2015, left is Feb 2016. Both taken out of cast.

So Salem is in her sixth cast. We're very happy with the correction so far, from 62 to 32 degrees in almost a year, and are so thankful for casting as a treatment option. We appreciate the continued encouragement and prayers from our friends and family. To limit the amount of radiation, we'll likely wait around 6 more months to get another out of cast X-ray. But we are so hopeful that it will be even better! Below are a few more pictures.


The babies playing in the room

Salem's back in between casts on Monday


The babies playing 😍



Tuesday, November 10, 2015

When Loss Isn't Necessarily Loss

I've written this post too many times in my head. A few weeks ago, my mom pulled out old an envolope full of pictures, likely developed at K&B; I felt like it was time.

One picture had just my dad, well with two guinea pigs, and was aged maybe around his early 40s. I commented that he looked just like my brother there. A few of the other pictures had me, my brother and my dad in them. He is dad to us, PaPeet to our babies, Uncle Sid, Squid, Louis, and Doo Doo to loved ones. Although it sounds like I'm talking about loss, I'm not. I'm glad my dad is still here with us, in his late 60s...well partially.

In late July, grandbaby #3 arrived - Declan. Dad made the hour and a half drive as he had for the first two, Salem (ours) and Nathan (my brother's). He spent three days visiting us all. He called and texted multiple times after to tell us how much fun he had.

I texted him pictures of Declan on Sunday, August 16, just as I did quite frequently, and I spoke to him also. He didn't realize I was still on maternity leave and talked about visiting again while I was still home.

A few days later, he was in a Behavioral Center hallucinating.

It's hard to say exactly what has happened these past few months; it's been a blur, likely from either a lack of sleep due to having a newborn or the denial of the situation. My dad has since been in the hospital, two behavioral centers and now resides in a nursing home here in Baton Rouge. Doctors have tried to regulate his medication and couldn't really diagnose him with dementia but mentioned the possibility of Lewy Body Syndrome, which can't be diagnosed until autopsy.

During visits, he mumbles quietly about things that are not there. His head is down most of the time, falling in and out of sleep. He sometimes looks at us but doesn't see us. He does not recognize us or say our names. But he smiles at the babies.

Although I have been grieving, I should not be grieving as if I have no hope. My hope is in God - no matter the circumstance and no matter the outcome. I'm not sharing all this simply for you to feel sorry for me. Instead, I'm sharing so you can pray. Pray my dad comes back to us. Pray he knows our names when we visit. Pray he gets to enjoy his grandbabies grow.

And pray for our whole (large) family who can do nothing else but stand by his side and pray.

-Jenny 

Friday, September 25, 2015

The Fantastic Four (and other happenings)

I've been way overdue for an update, so here's what's been happening with the Creightons!

First, our family welcomed its FOURTH member! On July 27, at 6:08pm, weighing 6 pounds 15 ounces and measuring 21 inches, Declan Dominiq made his appearance! We were ecstatic to hold our first baby boy, with his large blue eyes, blonde hair and skinny legs. After a 26+ hour labor, he arrived via c-section, but that's a story for another day. Salem was indifferent about her new baby brother at first, as she was staying with my mom while we were in the hospital and had just visited a few times.

Life with two under two has been exciting and challenging all at the same time! Salem calls her brother "brother" and says "Declan" when we ask what is his name. Every now and then she gets really excited and goes over to hug and kiss him, but she's a little rough. She has been a good helper by putting the pacifier in his mouth and supervising diaper changes, really she just likes to tag along. She also just recently started lying down beside him on his play mat, although she almost rolls over him sometimes. She does not like when he cries. I've told her that he cries because his tummy hurts, since he has gas a lot. So when she hears him crying she says, "hurts...crying." Declan is so sweet though. His gas issue is getting better, and he is beginning to focus, smile and "talk" to us. He is starting to like baths more and I think that is helping him sleep better at night. Thank goodness because I have to start functioning like a normal person now that I'm back at work.

About a month after Delcan was born, we went for Salem's 3rd cast. This time, they wanted an "out of cast" X-ray so they did that before applying the new one. Dr. Accousti was please to tell us it looks like she's gotten a 10 degree correction from casting just since April, so from about 60 to 50 degrees. Unfortunately, I do not have that X-ray picture as we were in a hurry, but I did see it that day. He is optimistic we will see more correction in the coming months. Everything else about casting day was normal. She goes in with one cast and comes out with a new one. She doesn't really know it comes off. In a way, I am glad for that. The curves and dips of the material in each cast have differed slightly, based on how he's had to shape her spine to be straight each time. This cast seems to dip a little more into her tummy on both sides, but she hasn't had any problems so far. Her new "in cast" X-ray is below and looks great. I'm still so happy with the waterproof casting material. The team at Children's Hospital is still communicating with the manufacturer, who is located in Korea. Apparently, they currently do not see the demand for making specific "molds" for this purpose so we are still trying to convince them. The team is still using sleeves that are purposed for legs and lower torso/leg combinations with the leg parts cut off, but those will only fit kids until a certain age. Luckily, Salem is on the smaller side. I'm hoping that my pictures of her thriving in this casting material coupled with the correction may soon be used to make a case, so that this might become more popular and benefit more kids!

Thanks for keeping up with us! Salem gets her next cast on October 26. Here are some pictures from the last two months.

Jenny


 
THE fantastic four :)



 


 


All X-rays, just to compare:
X-ray at diagnosis

In cast #1

In cast #2

In cast #3

Going home from the hospital

A look at the cast on

Monday, July 13, 2015

39+ Weeks

I'm 39 weeks and 2 days...and I feel great! So why does everyone assume I am miserable?

My due date of July 18 is quickly approaching. As hard as it is to realize, a due date is an estimation. It is not some magical day where my baby will make his planned appearance into the world. Although that would be nice to plan. So why is everyone stuck on that day?

There are a lot of people in my workplace, especially women. A baby bump is like a magnet for smiles, questions and comments. Some of which are pleasant. Some are not as much. There have been so many blogs and lists about what not to say to a pregnant lady, you would think people would read them.

I've been asked if it's twins, given looks of shock when I share my due date, told I won't make it the whole way, asked if I will be induced soon, etc. And of course I've heard the common, "you look like you're about to pop" and "oh you'll be sooo hot this summer." I thought I had heard it all, until this morning. Two ladies were commenting on my large pregnant belly and asked my due date. When I said "Saturday," one of the women replied, "and you're still driving?" That one caught me off guard! I immediately responded with a yes and that I feel great. What else am I supposed to do? I've decided that will be my newest response to people. I'm pregnant, not disabled.

Now, I recognize that I have been blessed to have pretty good pregnancies so far and that some have it far worse. A few sweet friends are among that group and I would imagine comments like these could potentially cause a girl to feel even worse.

Sure, I'm hot this summer just like everyone else. But I'm glad that I work inside and that I don't have far to walk to my building. Sure, my feet are a little swollen but I can still wear my sandals which is more than I can say for my first pregnancy. Sure, I'm having some trouble sleeping but wouldn't you with a huge baby attached to your front? Sure, I'm tired sometimes. But I have a busy life like anyone else and that's why God made coffee.

Most people approach me as if I'm miserable. For the most part, I feel great! I'm pregnant and this is temporary, so I'm still enjoying it as much as I can. So don't feel sorry for me because I don't. Smiles are nice though.

Special thanks to everyone who has told me that I look great, along with various other compliments :)

Jenny

Here's my last belly bump picture, 9 weeks ago, because you know the poor second baby gets far fewer than the first did!

Friday, June 26, 2015

Cast 2.0!

Two months flew by and Salem got her second cast Wednesday. As a reminder, her doctor is trying out a new waterproof material that you can read more about here on my post about her first cast.

With my due date quickly approaching for baby #2 and a lot of my leave already exhausted, I had decided a while back that I would not attend this casting. The plan was for Brandon and his mom to take Salem. They wouldn't have to stay the night this time so it was expected to be a quick trip, as we are only about 2 hours from Children's Hospital in New Orleans.

I was thankful that his mom was going for added support, and my 12-year-old niece ended up going as well. However, I was still sad about not going. I had her diaper bag packed with anything I thought she would need or be comforted by. I woke up the night before at a quarter to midnight, the latest she could have food, to give her a fruit pouch. By the time 3:00am rolled around, I was up again with everyone as they prepared to leave, as arrival time at the hospital was 5:30am.

Of course I knew Salem would be just fine with Brandon there and that he would also address everything we had planned to ask this time around. But I still gave him a list of questions - partially because I am a little bit of a control freak and partially because of my crazy pregnancy emotions. I wanted to know if the manufacturer of the material showed any interest in making bigger sizes, if he would taper the top more, if they needed to flare the bottom after the procedure, if I could get the X-ray, etc. I just wanted to make sure.

Turns out, they have used this new waterproof material on a few other kids after Salem's first cast, and she was only the second with it at that time. This is good news for them of course but also good news for us because the team has since found a few better ways to work with the material. Her procedure was a little quicker than last time, and her second cast came with upgrades! Practice makes perfect right?

Here are some details on the new specs:
(see pics of the first cast at the very bottom)

I had forgotten that Dr. Accousti had said last time that he actually doubled the material and wanted to try just one layer this time (it's like a sleeve). So as a result, it's a little slimmer. Also, this allowed him to taper the top more, making her look less bulky, but I can still stick my fingertips inside. She's a little lighter, and I think she can tell too, judging from how fast she flies around the hallway corner with her push toy now.

The waterproof liner now folds over the top and the bottom. Last time, the bottom was wrapped in hy-tape, we applied moleskin over that right by her belly and it had to be flared out a bit. That area did get irritated a little, and we had changed the moleskin a few times over the two months. However, her chest and under her arms where the liner touched her skin were never irritated. So I think this will be better. Speaking of her skin, the doctor told my husband that her skin underneath the cast was in great condition. Also, the bottom looks like it doesn't push inward like the last one, so there was no need to flare it away from her tummy. All good news!

Other than that, there's still a little hollowed out space for her tummy. They want us to come back in two months, which is good because I don't think she'll make it to three. They were able to manipulate her spine to under 10 degrees, see all the X-rays below. I didn't get an exact number but it looks great!

Lastly, I asked how communication with the cast material manufacturer was going. If you remember, they were only making these to fit arms and legs at the time, and we wanted to put this new opportunity on their radar in hopes they would begin to make larger sizes. The doctor said they are still talking with them but that they are currently making hip casts that extend from the legs up into the torso. So he plans on cutting the extra material used for the legs and just using the torso material in castings like Salem's for now. I feel like it's moving in the right direction, but I will also be following up again soon with this.

Thanks again everyone for your prayers and encouragement! Salem is still as happy as can be, her spine is growing straighter in there and we couldn't be happier. Hope to update again soon, enjoy the pics below!

p.s.- kudos to Brandon for being an awesome hubby and daddy :)

Jenny

 
Her first X-ray before casts
 
 
X-ray in first cast
 
 
X-ray in second cast
(They look pretty similar to me)

 
At the hospital with daddy
 

Sitting at a restaurant that night. I can tell it's less bulky up top.

 
Playing the next day

 


The top has some padding with that liner, it looks closer to her chin than it really is.
 

 
Filling the first bath with her new cast

 
They sent the first cast home! You can see that the liner covers the entire inside, that there's a small space for the tummy and some of the differences between the two casts.