Healing and moving on

The month of December was pretty much centered around healing and laying around. Logans surgery went well, there were no complications and his incisions have healed beautifully.  One issue he had was cramping in his legs which was so heartbreaking to watch especially when we could tell it was about to happen just from the look on his face. We are now facing another problem that Brandon and I have been keeping an eye on for a while now.  There has been swelling on the back incision from day one, the past couple weeks it has been worse and last week the swelling was not going down. Laying flat all weekend helped with the swelling however that is not a way to live. We are very lucky with Logans teachers and they are doing two sessions of flat time in class for him to relax. I just love his school, teachers and nurse!  




This is his back incision. Currently it is darker red and more swollen.

Logan and I saw his neurologist at Scottish Rite yesterday and he believes, as do we, that there is a leak inside along that incision. This has been a fear of mine before the surgery even took place as it is in the spinal column and we are unable to tell if it is Baclofen leaking or spinal fluid.  We have another appointment today with his surgeon at Cooks to verify this and see if he would like to proceed in the same direction which is waiting. If we go in and revise the incision there is possibility of infection and more complications. He did receive a binder to wear as often as possible yesterday to help with applying pressure.

On a positive note we have seen improvement with Logans tone going down and he is looser and diaper changes have been easier. He has also rolled from side to side a few times which is amazing for us to see again, we were very disappointed that Logan was not himself. I told Logan that if in one year he was not himself and able to move around I was going to take this pump out. It has been heart breaking to see his independence go completely away and only laying on his back and needing to rely on us 100% again.  He is finally happy again, still not the same Logan he was before surgery but getting there.  I'm not sure what will happen when we go for a refill or when the dosage is increased with his demeanor or his mobility, I know the increase will make him tired and looser until he becomes accustomed to that new level. This is a balancing act and a long journey we have ahead of us.

Lizy did have her stents removed two weeks ago and is feeling much better since. We are so proud of her and all that she has gone through.  She didn't have any happy juice before going back this last time, I think Brandon bribed her with ice cream which always works in this house.

Some photos for family. Love these kiddos and that handsome Brandon. 

Before the girls Christmas parties at school. They are getting too big.

Date night with daddy at Madisons favorite...Buffalo Wild Wings.

 Will try to update soon.

All our love ~ Amy-Jo

We just love the hospital

This is more of an update for family and friends and I will try to keep updating as needed.  

First off it was decided in September by Brandon and myself that we would take Lizy to a urologist.  She had already had two febrile UTIs in the past couple months with her fever up to 104.  The pain she would go through was unbearable to watch, I cannot imagine how she was actually feeling. These were not the first two, however every time a UTI would present itself it would be worse than the last. With my history of kidney and bladder issues at the same age we at least wanted her checked out.

After her tests were ran it was discovered she does in fact have bilateral renal reflux(VUR). With a few different options we chose the surgical route for Lizy. This past Monday she had bilateral ureteral reimplantation as well as a cystoscopy. Her urologist wasn't happy with the flow so he put a stent in each ureter which is now causing her so much pain. It has been so hard watching Lizy recover but I do believe we made the correct decision especially since the stents were needed. She has an incision similar to a cesarean and is having a hard time with that as well. It is difficult for an adult to lay around and recover let alone a 6 year old little girl.

The same day we were told Lizy was going to need surgery we were also told Logan could be scheduled for his baclofen pump placement. He had a surgery scheduled this past June however in May he had Pancreatitis and lost too much weight. I had been against this procedure since Logan was three years old and we were told it was a great option for him and his tone.

We have tried Botox which stopped working after three treatments. When it did work the high tone in Logans body, mainly his legs and hands, gave him the ability to move a bit more freely. The past year the tone in his legs has become increasingly high. If you are not around Logan often is difficult to change his diapers, his legs are always scissoring which is abnormal for him. Logan has hip dysplasia as well so before that is corrected, via yet another surgery, his tone needs to be under control. His left hip is completely out and his right hip is working its way there. He has grown so much the past year which is a contributing factor in all of these changes with tone and his hips. The good thing is his hips do not seem to bother him at all.

Logan is going in this Monday, December 14th for his Baclofen pump placement. His neurologist is at Scottish Rite and is amazing however we are closer to Cooks now in Fort Worth and will be using a neurologist there for the surgery.  When we met him he took me through some photos of the procedure step by step of a study he recently did to ease my mind. I have faith in him and have heard great things about this neurologist. The pump itself is 3.4 inches in diameter and there will also be a catheter inserted into the spinal fluid. I am absolutely positively terrified of this procedure. No matter how many people tell me it is going to be amazing for him and it will be safe I am scared, there are too many possible complications and side effects for my heart to be at ease.

We are so thankful for family flying down to help take care of the kids and family sending special packages to make the kids smile.

Thank you to our friends for meals and keeping our family fed, although I was very reluctant to accept I cannot tell you how helpful it has been to have a meal already prepared.

All prayers are appreciated for our babies.

Love ~ Amy-Jo

Sometimes there are not so great days

Our children make me so happy, Brandon too, however this is not what I am talking about. I went on our blog back to 2008 today and turned into a blubbering mess reading both happy and sad moments.

Every day six years ago I would look at our beautiful precious babies and think about Cody.  I was and still am so angry, mad and frustrated about losing him and still not knowing why.  I would often wonder what it would have been like if there was that other boppy on the floor or another swing or crib in the nursery.  No matter what I did or how hard I tried, I could not get past these thoughts.  I struggled so much and hate that I felt this way.  I felt that I was taking something away from our children who were there in front of me that my body fought so hard to keep on this earth with us.

It took three years for me to stop being as angry and upset as I was the day we lost him. I truly never mourned losing Cody when he passed. I tried to stay as positive as possible and in good spirits to save our three other precious little ones.  Once they were here, I honestly did not have the time to mourn him as we were so busy trying to survive the first year and enjoy every moment, it has continued this way ever since. There have been triggers that would set me off all the time in the first few years and now the same things that used to send me into a crying fit make me smile and look up and think of our son. It seemed that every show we watched, every place we went, and everything I read on the internet had someone named Cody.  I am not sure if this was God trying to get me to mourn or letting me know he was always with me. I don’t know that I want to mourn him especially since I still think of him every day and say good night to him every night.

Today, as much as I think of Cody, I am able to enjoy our lives so much more and talk about him when asked.  I am still a mother to quadruplets, however when people ask in passing we say triplets.  If Elizabeth or Madison are with me they do sometimes say no we are quadruplets and then I will explain that our son is with God. Don’t get me wrong, I still have what I tell Brandon are bad moments or bad days and I am so thankful he is understanding and lets me have my time.

In a way I feel so lucky, yes this may sound weird, however I am lucky that I get to look at Logan and know what Cody would look like and will for the rest of his life. I am lucky that Elizabeth is so spiritual and has talked about Cody since she has been able to talk. She told me she had another brother before we ever talked about him with her.  The girls almost daily ask to hug and kiss Cody, this may seem weird and odd to some, however it works for us and the kids were and are connected to him.  Logan, I think, understands everything, he is a smart little cookie and we have had many conversations and he listens to Lizy talk about their other brother often.

My heart will never be healed from losing our son, but he is such a big part of our lives in a small way. Our children have helped their mother heal and grieve. They may never know how much their love and compassion for their brother they knew in the womb has meant to me and gotten me through so many difficult times.  I would be lost without Logan, Elizabeth, Madison and Brandon.  I need and want to say a huge THANK YOU from the bottom of my heart and the depth of my soul for healing me and loving me when I have been down and you may never have known why.  I hope and pray one day you read this and know what your love and kindness can do for others.

My love always ~ Your Mother and Wife

Pumpkin Patch Craziness 2014

I thought it had been way too long since the last update, even if this is just for our family it is time to start posting again.  So much has changed since I have been in the blogging world.  We have moved, bought two new vehicles, the kids are 5 and in Kindergarten, and Logan has an electronic wheelchair.  Like I said it has been way too long and I am trying to focus on making a point of updating more often to keep this for the kids to have.

This past weekend we took the kids to a pumpkin patch which was overwhelming for both Brandon and I due to the amount of people. Still not sure how we survived without medicating ourselves or losing a child. 

You’d think I would have all the photo taking opportunities down like a science by now however I forgot to get a family photo and a photo of all three kids together. It was nice to be able to go with family and have other kids with the girls.

Lizy was not in the best mood in jail, go figure. Madi Belle on the other hand was having a blast.

Bouncing fun, the girls could live in these bouncy things.  I always have to close my eyes and pray they don’t get germs from them as this is still so BIG for me.

We had to have a photo with Harry Potter

Family! Daylen and Darren were thankfully there and the girls were so happy to see them.  Thanks Brian and Danielle for meeting us there.

Through the hay maze girlies…

They survived yet our girls hair had a few issues with the hay and the humidity.

This was the attitude we had from Logan pretty much the entire time except…

Riding the train, the only happy time Logan had.  Look at that gorgeous face!

Poor Daylen got stuck with both girls in that thing, she sure is a trooper.

Annnddd they are done.

Logan guarding the largest pumpkins we could find.  Poor dude didn’t make it to T-ball he was so tired.

 

Hope y’all enjoyed the little update.  I am hoping to be back on very soon.  Happy Halloween.

Hugs and Love ~ Amy-Jo and family

Field Day for Logan

The end of another school year has come and I did not write a single post throughout the year.  I have been horrible at keeping up and trying to stay updated with all that has been going on with the kids. 

Field day was fun, Elizabeth and Madison went with me to Logans school which made them oh so happy.  Everyday the girls are not in school they ask to go get Logan and go to class with him.  I absolutely LOVE their want for learning it makes me feel that I am doing something right.

When we finally arrived (late) they were eating donut holes which is a favorite in our home so of course we just had to partake. The first stop for field day was the carnival area.

A big thank you to one of the teachers for these photos.

The rest are from my phone, what would we do without the camera on our phone?!  I would be lost anymore since I cannot find my charger to my small digital camera and do not feel like carrying my large Nikon around everywhere, yep getting lazy.

Lizy on her favorite thing at carnivals, anything that bounces.

Madi Belle has a new love  of small thrills, some things Lizy does Madi will now do.

I have also decided I could use a bounce house at home to burn off some energy.  I did not let Logan in nor did I get in with him at the school, this is one I was not prepared for.

 

On to the next phase were the races, I do not have any photos of Logan as I was pushing or carrying him here.  The girls did get to join in the fun and I was able to sneak in a few photos.

Nap time anyone…

This was a Tuesday, two days prior to Logans last day of school. Shortly after he arrived home he had speech therapy when Hannah, Logans attendant, noticed Madison was not looking so well.  This started a terrible string of illness in our home.

Madison all of a sudden had a fever of 103.7, crazy!!!!  She slept the next couple days and was able to return to school that Friday.

Unfortunately Friday I received a call from the girls preschool that Elizabeth had complained of a headache and had a fever of 103.4. It was a long week and an even longer weekend with Logan getting a low grade fever and unhappy kiddos.

We are extremely thankful everyone is feeling better now and that it was just a virus doing circles in the house.  Logan could not afford to get sick, I will let you know about that in the next post.

Hope you enjoyed the photos and the little update.

Hugs and Love ~ Amy-Jo