Sick Baby:Part 3

After we got home from EIRMC from our 4 day stay things got a little better and then worse.

We ended up back into the hospital due to possible dehydration. His wet diaper count had dropped significantly and on Saturday he hadn't had a single wet diaper. He had stopped wanting to eat or drink, so whatever nutrition he was getting was because we were syringe feeding him. We were so tired of everything by this point. It was getting ridiculous! No one could tell us what was going on.

We stayed in the hospital the third time over night and were discharged with again no answers.

We got discharged on a Sunday and saw our pediatrician the following Tuesday June 25th. 

Up to this point Trenton had been very inconsolable, he would cry constantly and also would tighten his body and throw himself into an arch.

Trenton was still asleep when I left for work Tuesday morning, (which was not normal behavior for him the past several weeks). He ended up sleeping in until Mike went in to check on him at 8:30. He was awake but had contorted his body into a weird position, and his left eye was way off to the side while his right eye was straight. He wasn't crying, and almost looked drugged.

Mike took him into our appointment, they weighed him and found that he was down 4 pounds. His poor little body was only 16 pounds and he looked weak and frail. Our pediatrician was concerned about Trenton's eye as well as his weight. He recommended that we have some labs done, and that we head to SLC to PCMC to be treated.

Mike called me at work with the plan, and we were on the road with-in the hour.

We arrived at PCMC Tuesday at 4:00pm and were admitted right away.

 They ran some more labs and then we waited for awhile. About 12:00am they placed a feeding tube in his nose. The next morning we had several consultations with different specialists. It all kind of ran into a blur after this.

We sat around while they did lots of labs, we talked to lots of doctors, and ate lots of junk food.

Mike had to go back home on Thursday morning to work...someone had to pay the bill! But my mom stayed with me and we talked to MORE doctors, and sat around some more.

Trenton was a champ, and after getting some calories into his system started acting slightly better.

We received a few packages from family and friends while we were there, and are so thankful for thoughtful people in our lives!

We met with a GI specialist, a Geneticist, a Pediatrician, a Nutritionist, a Rehab medicine specialist, a Physical Therapist, an Occupational Therapist, a Speech Therapist, etc.  

We were able to get out of the room and take some much needed walks...

We had an EEG done, to check for possible seizures, after Trenton displayed some weird behavior. The results came back negative, but only really mean that while the test was being preformed there was no seizure activity.

We also had an MRI done of his brain to see what was going on. The results showed us a lot. It was found that Trenton's brain has what they call "Neurological Digression". Which means that since his first MRI back in December 2012 his brain has regressed even more. There were also more abnormalities found in his brain. We don't know much about this but we had some more in depth genetic testing done to look farther into a possible diagnosis, but there still is a 60% chance that we will never know exactly what, why, or how this all happened. And what the future looks like, but we will pray we are in that 40% chance of getting a diagnosis. 

Through the OT we got Trenton a sling for his hand, so that he would learn to keep his hands open instead of closed.

Going for walks in the wagon from Aunt Tami, Uncle Vaughn, and family!!!

By Sunday things started turning around and looking upwards and Trenton started to look more like himself. He started to throw out little giggles and sly smiles and out hearts were on cloud nine!

We were scheduled to discharged that following Tuesday July 2nd, but before we could I had to learn how to place a feeding tube in Trenton's nose since it would be a permanent thing from now on. It was scary, but not has hard as I thought it would be.

And finally the moment came, we got to go home!!! After a week of living in a hospital, even a fantastic one like PCMC, I was SO ready to be home!

Once we got home life started getting back to a more normal way. Trenton has done very well since being home. He's on some medication to help relax his muscles, and it seems to be doing such a great job. He is more loose and able to finally start to hold on to things and bring them to his mouth!

The feeding tube is a permanent thing for now, he still doesn't have much desire to eat with his mouth, even though he is totally able to. They guess that he probably will never make it back up to even 30% by mouth, but we will work with him daily and see where we get. We are hoping to get on the schedule to have a G-tube placed. A G-tube is more discreet and is just right in his belly, and not through his nose.

We couldn't have asked for better doctors while we were at PCMC, and consider ourselves extremely lucky and blessed! We truly believe that things happened for a reason, and happened in the order they were meant to. We continue to work and pray daily for answers and results, but only time will tell.

We are beyond grateful for my mom to drop her life for a week to come be with Trenton and I. We also are so thankful to our Heavenly Father for the love he has given us, and for trusting us with such a special spirit! We have a long road ahead of us, but we are ready to get things going!

Time Out For Women 2013

(warning: this gets personal and real, please be for warned and polite/careful with any comments you may choose to make at the end of this post, or to others)  

Today I had the privilege to attend Time Out for Women. Amazing!
I needed it more than I even knew I needed it. It was uplifting and well received by me.

Here is what I learned:
Life isn't easy, for anyone. Life can be hard, it can and will throw challenges at you both night and day. But it is through our faith and our reliance on our Savior Jesus Christ that we can make it through these challenges that we are faced with.

I wouldn't look back on my life and say it was hard. I wouldn't say I had a hard childhood or even a hard teenage life. I did the things that I was told to do by both my parents, other adult figures, and most importantly my Heavenly Father. I went through life with a smile on my face, and a skip in my step you could say.

Now, I am not saying my life didn't have it's troubles or disappointments by any means. I am saying that my troubles, were not trials for me.  They may have seemed like mountains to climb when I was younger, but looking back those "mountains" were merely hills.

These past 2.5 years in my life have been different for me. Both good and bad. I still don't have a "hard life", but I no longer have a skip to my step. My hills have become mountains. Becoming an adult and facing the world has changed me. I have been faced with trials that I never even new could be possible, let alone be happening in my life. Life has become challenging in ways for me.

I would never trade my trials or challenges for anyone else's, but that doesn't make them any less hard to trudge through. Today I realized though that I have let the light go out of my life, and out of my eyes and heart. Life has a funny way of doing this to us, each of us. Lifting us up, and then dropping us smack onto our faces. Our challenge in this life is how we recover from this drop. Will we simply lay there and never move again, eventually forming to the ground we fell on. Or will we lift ourselves up, brush ourselves off and start the climb once again?

Life has dropped me onto my face, and I have stayed right there. From time to time trying to "sit up", but always ending up laying back down, becoming one with my surroundings. I didn't realize until today just how true that statement was for me. I have been sitting down for far to long now, having a pity party for myself, and not realizing on what I am missing out on. I was missing the bigger picture. I haven't been living as though I matter, as though my family matters, as though we are something more than the challenges and trials we are faced with.

While I know and truly believe with every being of my soul that the gospel of Jesus Christ is true, I haven't been showing those around me that I believe the things which I claim to know and speak of weekly. My actions are speaking louder than my words. I had lost my vision.

Elder Scott has said:
"Heavenly Father did not send us to earth to fail, but rather to succeed GLORIOUSLY"!

This I believe. This I know. 

I know that God does not want me to fail. He wants to help lift me up off the ground that I have been laying on, and carry me to where I need and want to be. I have to much at stake in this life, and in the next to not get up and trudge on through new and ever lasting trials that I face.

Today while listening to the speakers and musical numbers I had an 'ah-ha' moment, I realized that my priorities are not in order(although I had felt they were). I realized that I had let fear and doubt take over me, and I had let Satan into my life ever so slightly for to long. The blackness and darkness he brings was taking over the light and joy in my life. The mundane tasks of the every day were no longer miraculous and exciting to me. To be frank, depression was becoming a real word in my vocabulary.

I hate that word, and everything that comes with it. I hate that I have let myself start to get here. But it happened, and I'm no longer letting it take control over me. It's my turn to fight and let my actions and words be one. I am ready to 'Tap into the vision of what God already has in store for me'. I'm ready to face the storm and still stand when it's all said and done. I'm ready to fight to be strong. My fears are still real, my trails will not go away-and my even get worse before they get better, but I'm ready.

I'm so grateful that I was able to attend Time Out for Women today, It was powerful and much needed. I am also thankful for my family for helping make that possible. It's amazing what the Lord will do for you when he knows you really need to hear something!

****Please do not worry about me. I am not depressed, but was merely starting to feel that way. I am fine, and will be great. I just needed to write this down so that if I ever forget what I learned today and feel myself heading back down this road I can refer back to this.****

Sleep Training.

Oh the dreaded sleep training. We put it off for far to long, and we knew it. We had created so many bad habits, that were starting to bite us in the bum. 

When Trenton was first born we constantly held him, because who doesn't love a newborn snuggle. 

We held him during nap time, and all night until we were ready to go to bed, then we would transfer him to his crib.

He would wake up almost every night about 2:30am to eat, I would feed him and then hold him for another hour until he was fast asleep. Then I would put him into his bed again. Needless to say, this got old. Finally it got to the point that he would wake up the minute we put him down, and we were sleeping with him on the couch-while holding him in our arms. 

Annoying!!

Well we knew something needed to change. We had "tried" sleep training before...kind of. But the poor baby would cry for hours on end, and this working momma couldn't take it any longer, so we stopped. My fault. 

At Trenton's 9 month appointment, Dr. Anderson asked how T's sleeping habits were. We explained our current situation, and he HIGHLY encouraged sleep training. So we went home and that night started on our journey. Because of T's current physical situation, Dr. A recommended starting with night time, and once he had that down adding in nap time.

It's now been 9 days, and I can happily report (knock on wood BIG time) that everything is going pretty well. He is getting better and better, and his crying is less and less. He has slept straight through the night 7/9 nights since the sleep training has begun....I can count on 1 hand how many times he had done this before we began!

We are now starting the talk about nap time....eek seriously DREADING this one!

Wish us luck!

MRI Results.

A few people have asked if we have heard any news on Trenton's MRI results. Truth be told, we knew the results the night of the MRI. However we have been taking some time to comprehend and take in all that we were told. But we realize that we can no longer hold people off.

poor hungry boy. 11-15-12

 After the MRI had taken place, and we were discharged from the hospital Mike and I both had to unfortunately head back to work, and Trenton headed to grandma Jex's house for the afternoon. After I got off work I received a phone call from our pediatrician's office, our nurse was on the phone and asked if Mike and I could come to the office that night. Mike was closing at work so that left me to go to the appointment. 

waiting..... 11-15-12

 My mom went with me to the appointment, thankfully. Dr. A then informed us that the MRI had shown some abnormalities. After that all that I really got was a bunch of big words. Basically what is happening is that the part of your brain that controls your motor functions is either over or under active, i'm not sure. This is why Trenton can not control all of his movements. We were referred down to Primary Children's to see a pediatric neurologist. We hope to understand this all a little more, and to have some questions answered. 

  

mommy and baby. 11-15-12

We will know when our appointment in SLC is later this week. 

So yes, lots to take in. Everything is fine though, nothing has changed really. We knew there was something wrong, and now there are just some big words tagged along. Trenton is still a happy and healthy little boy and continues to amaze us each day.

We will keep you all updated with anything new that arises.

until then....... 

Swallow study and ITD eval

11-9-12

Trenton had his swallow study yesterday morning, the results all came back just fine. 

He is eating normal. Good news!

Then yesterday afternoon we had the Infant Toddler Development (ITD) evaluation done.

Mary, the evaluation lady came over to our house to check out Trenton. He was such a flirt with her, he was all giggly and smiley for her. He scored really well on his hearing, vision, social, and verbal skills. But he came in extremely low, like if you could get a negative score he would have, on his motor skills. He lacks in his gross motor as well as his fine motor. 

Mary said they would see what the MRI had to say and then they would make a plan to the future. 

From what she could say though it looks like Trenton will be in some sort of therapy for a long while. We will know more though after the MRI comes back. 

 

MRI is Thursday so we will update after that. 

until then....

6 Months

crib evaluation

 6 months! WOW! That is half a year old, as in we are heading up hill fast to hitting the year mark! 

This month has taken us for a spin....lots has changed, good and bad.

I have been waiting until we saw the dr. to get all of Trenton's stats. He is in the 14% for his weight, the 46% for his height, and 41% for his head. So he is long and skinny. He had all of his 6 months shots, including the flu shot...which he rocked! He was such a champ after the shots, I was so proud of him!

Lately Mike and I, along with some family members have noticed that T has and has not been doing some things that "normally" they should. He also has been extremely wiggly, and never can hold still, even in his sleep. There have been a few other things we have noticed: not wanting to sit up, roll over, hold his head up, have anything touch his tongue, always taps his foot, and keeps a closed fist 90% of the time. We have started to grow slightly concerned, so when it came time for T's 6 month check up we expressed our concerns to our amazing pediatrician.

During his exam it was decided that T is very healthy, however there are some things that the Dr. also was concerned about. We talked about how each child grows at there own rate, however he explained that some of the things that T is not doing is a concern. He explained that he should have been doing some of these things by 4 months. So it was determined that Trenton would need to see a Infant developmental specialist, he will also need a swallow study and an MRI done to evaluate if there is something possibly wrong, or if he just is a slower grower.

We talked a lot about the outcome of these test, one of the diagnoses is CP, or cerebral palsy. Dr. A was quick the explain that he was not saying that this is what T has, but just that it is a possibility.
Obviously if that is the case we are looking at a very light case of it. We have the develop eval and the swallow study this next Friday, and the MRI the 14th. We feel confident and know that what ever the results may be we will be blessed and the Lord will see us through.

We know that our baby is going to be fine. Other than the things just talked about, everything is A-OK! We love this little boy with all of our might, and know that things will work out for the best!

until next time.....