Tacen 28 Months

I had started to write a few things down for a 28th month post for my sweet Tacen.  Over the last month or so I have compiled some of my favorite things that I always want to remember (mostly during the middle of the night as I nurse Dax).   I sure miss this little guy and all the joy he brought into our lives! I feel so blessed to have been his mother for the short time he was here with us. I learned so much from him in such a short time. I will always love and miss him.  I can't wait for the day I can hold him again in my arms (I may never let go!).  Here are a few things about my sweet boy!

• His speech was really picking up. Some of my favorites: p -pancake, adoo -open(open the door), howlp- help, I need howlp pease, Au- for on and off, fro - frog, ele- elephant, aaa- ant, train says choo choo!, car says beep beep!, cow, p is also pig, Wa-water, ju-juice, konkey-monkey, tig or ger for tigger, kankey - blankey, down, I poop... I poop I poop I poop (fast), shoe, hat, ouside - outside, down, amean - amen, Cookoo- cookie, cacker -cracker, Dason- Daxon, two, Tacen, 
• Animals and sounds: lion rrrrrar!, puppy woof, kitty meow, sheep baaa, cow mooo, duck kack, horse neigh (high pitched), chicken cuck, cuck, Monkey - he would make sounds just like curious George, 
• He loved pancakes and would ask for a p almost daily. He loved almost all breakfast foods. Especially anything with nutella! 
• He was really big into asking, "Daddy?" Every time we went anywhere in the car he assumed we were going to see Daddy.
• He loved Cheerios always! Tried and true!
• Loved Trix cereal and would ask for ball, ball? to eat quite frequently!
• Always LOVED rice! We called him out little sumo wrestler.
• LOVED Curious George! 
• Called TV - T and would always ask T? 
• Loved Daxon and was so gentle with him. Especially loved to gently rub Daxon's head.They were just starting to get interactive with each other where they would smile and laugh at each other! He knew right off that Daxon belonged with us. We soon couldn't go anywhere with him saying, "Dason?" He also would run back to his crib and stand there when Dax would cry until I would get him out and help him!
• He never said a lot, but he always made you know just what he wanted!
• He had the best snuggles imaginable! He usually woke up from his naps kinda grumpy, but he'd need his kankey and he'd rest his head on my shoulder and just snuggle! I really miss this!
• The kid loved water anywhere there was water outside he'd find it. It didn't matter how small! 
• He loved hot wheels cars that is one thing that he always had with him or close by. He always had to take one to bed and most often if possible he'd shoot one under the door. His little face would light up completely whenever he got a new one! And immediately he'd ask,  "Out? Out?"
• He LOVES his Daddy! Every day when Cade got home as the garage door would start to go up, I would say, "Who's home?" he would then respond, "Daddy!" and go running to the door to greet him!
• Every night the last couple months he'd lay on the floor in front of his door and fall asleep. Then later on we'd go in and put him on his bed. 
• Most often first thing in the morning he'd lay in front if his door and knock saying "Daddy! Daddy!" that's the easiest way to get Cade out of bed! 
• Whenever I would lay him down for nap or bed he would lay on his tummy, have tig under one arm and I'd always give him a kiss on the cheek and tell him I loved him. He usually close his eyes.
• He had recently started giving me kisses...on the lips. He wouldn't kiss Cade though, just me! I loved it! He usually say, mwahh! 
• His adorable friend Madison had just taught him how to swing on his belly and he LOVED it! He would still say, "Swing, swing." when he'd swing like he'd been doing for a while.
• If he was done at dinner he'd say, "All done!" he'd been good at that for a while, but if you weren't quick enough he'd start saying, "Down! Down!" he also thought down was also used when he wanted to get up somewhere. 
• He hated when he'd get one of my hairs on him and he'd say, hair and have to get it off!
• He loved pushing the paint roller up and down the driveway. He also loved pushing the umbrella stroller. It had a dual purpose though because if he got too tired he'd climb in and expect you to push him after that. 
• He loved his wagon he got for his birthday. He had fun riding in it and also pulling it up and down the sidewalk. He'd usually pull it part way and then expect me to take over. 
• He loved when Cade would push him around in the laundry bin. We'd count 3,2,1...and he scream go! Then we'd push him around. He could play that game forever! Too bad Cade and I would get worn out!
• He also loved being pushed around his his black police car. He'd do the same thing counting 3,2,1 or ready set and he'd yell, "GO!" 
• Recently he started liking to tip over his little black car! He'd climb all over and play. He was even getting good at setting it back up! Silly boy!
• He always loved climbing up on the ottoman and then diving off into our arms. Didn't matter if you were ready for him or not!
• He also loved if we'd take the lid off the bigger ottoman and he'd climb inside.
• He loved when we'd build a tower with his stacking blocks and then he'd have to get his red tonka. Had to be the red tonka and knock it over. He'd yell, "GO!" for that too!
• He could spend hours in the water. He'd play in the tub every morning while I got ready. He'd liked having the black dish bins or blue bucket in with him most recently. 
• He loved taking the blue bucket to the hose spicket out front and have us turn it on so he could fill it up! Then of course he had a ball playing in the water!
• He was always good at giving his stuffed animals hugs. He'd put them up next to his face and squish them between his face and shoulder. Often we'd have to give hugs to his stuffed animals too. He recently started to like the panda finger puppet in the quiet book I made him and he'd give that little thing hugs too!
• He LOVED the iPad and iPod! He could spend hours playing games or watching Disney or PBS kids apps. He taught Cade some tricks he didn't even know how to do. He even said iPad very well and would ask for it all the time. If it was gone with Cade to school he'd then ask for the iPod. When we spell things to disguise it we had to spell p-a-d because if we used the i he'd catch on.
• He was very particular about his blankey. It always had to be dots up. There couldn't even be a little bit of the monkey side showing. He definitely loved his kankey! 
• He loved his baba! We tried SEVERAL times to get him to drink milk from a cup and he refused. Our last attempt in Aug 2012 we bought some new sippy cups special. He went 5 days without a sips of milk. After we gave up I got out the new cup and showed him me putting juice in, he drank it right off! Stubborn boy knew what he was doing! 
• Loved his bath time! Water boy! After every bath he loved to go streaking through the house. He'd always run out of the bathroom, stop and check himself out in the mirror and then keep going. I would always yell,"ahhh streaker." he thought he was so funny he'd run and just laugh and laugh!
• Loved playing in the laundry bin.
• Loved playing in the drying. Even learned how to open and close it by himself. He found the light inside fascinating. He loved playing in the dryer of all things. It never bothered him when he'd close the door and be I. There in the dark. If he wanted to get in and there were close inside he'd throw them out. Same went for the laundry basket. He especially loved when his Daddy would push him around. 
• He loved the sun roof. He'd say, "pu, pu!"(for push) and that meant I should push the button and open it. He'd also do the same thing for the garage door so he could go outside.
• I have a wheels on the bus iPod game and it has a car racing part. I told him, "tap, tap, tap." After that every time he'd play he'd say tap, tap, tap as he played. It was so cute!
• I loved doing his hair spikey. Half the time right after I'd do it he'd reach up and flatten it out.
• He was getting so good at standing by the car and waiting while I got Dax out. Then he'd usually hold my hand and we'd walk in the store.
• He always loved playing in the cars in the garage and would usually put our sunglasses on at some point.
• One time I hid some new hot wheels cars in the nightstand and he found them. He HAD to have one so we have him one and hid the others. The next day he came back and looked in the nightstand expecting to find a new one. He got so upset that there weren't any there. Because there should be an unlimited supply if new hot wheels in the nightstand.
• He loved the movies: Cars 1&2, Kung Fu Panda 1&2, Tangled, Princess & The Frog, Bolt, 
• I made Tacen a bean box last winter and he loved playing with, but it would almost always result in beans all over the bathroom floor. 
• He loved the rocking chair Pa and G'ma Sue have him for just first birthday. He'd often say, "rock, rock," while rocking in it. He always was a date devil and would stand up in it though!
• He loved saying "a-mean(amen)" at the end of prayers. He got to the pint if a prayer was too long (15 secs or longer I swear) he'd say a-mean until you finished. 
• He always held out the m in mmmmmore! I tried so hard to get him to say more and when he finally did he loved asking for more of everything! 
• My mom reminded me the other day he started saying, mon, mon go! It took me a while to figure it out, but it was for come on, lets go. I soon realized I said that quite often to him and he picked it up.
• I also loved daddy started out as a-die-y. It also took me a while to figure that one out. He loves his daddy!

I know there are many more things about this sweet boy.  I may have another post in the future with more things I'd like to remember, but there's a good list for now! Love this boy!

Tacen's Celebration of Life (Funeral)

Tacen's viewing was Friday Nov. 2 and his funeral was Saturday Nov. 3. We had so many people show love and support by coming as well as with all the beautiful flower arrangements sent to us.  We loved how the casket and casket spray turned out! They were very fitting for T - cars and beautiful bright flowers!

Tacen loved Finn! This was by far his favorite car. When he asked for a car often it was this one!  He would get new cars and they would be his favorite for a day or two and then he'd always go back to loving Fin.  You can tell by looking at it that it was very loved.

He also love the book "The Little Engine That Could." We read it several times a day!
In the weeks before Tacen passing I began to realize that Tacen was our little engine that could. He kept going even though it was so difficult for him.  He is such an example to me!

Our sweet friend Heidi sent this truck. Tacen loved this truck and would make his way to their back yard to play with it whenever we would stop by.

Thanks to G'ma Sue we had beautiful pictures to display printed up quickly.

 So many beautiful flowers were sent.

 The mortuary had a new hearse. When I saw it I said look at that Tacen would have thought that was a pretty cool car.  Then as we were right behind the hearse driving to the cemetery some cop cars flew past us to stop traffic and I said he would have wanted to be in those fast moving cop cars instead.

All the pallbearers

The closest thing we will have to a family picture for a  while.

Norman Family

Kowallis Family

Extended Kowallis Family

 The celebration of Tacen's life was really well done. It was one of the hardest days of my life, but I felt like we did a wonderful job honoring our sweet boy! He is such a special little boy and we will miss him desperately!  We are so unbelievably thankful for all the love and support we have been shown!

Here are a few pictures of Daxon after the funeral.

Aunt Alisa loving on Dax

Tacen's Obituary

Tacen Cade Kowallis came into this world July 2, 2010, weighing 8lbs 9oz and 20 1/2 inches long. He was a perfect healthy boy! Not long after his arrival fireworks went off just outside the hospital. This was the beginning of how much light he would bring into the world! He grew and developed well! He always wanted to be standing and then walking from an early age. He was a goer! Always busy! He loved to go outside and would ask several times a day come rain or shine! He has a special place in his heart for each of his grandparents who loved and spoiled him more than any child I've seen! His contagious smile and laughter made our lives and home joyous! He returned to our loving Heavenly Father on the evening of October 29, 2012 in Memphis, Tennessee at Lebonhuer Hospital. He died of respiratory failure due to swelling in his spinal column, but Dr.'s could never determine the cause of the swelling and all autopsy results came back inconclusive. His love and influence will be greatly missed by all whose lives he touched!
Survived by parents, Cade and Kelsie (Knight) Kowallis, brother, Daxon Knight Kowallis, grandparents, Scotts and Sue Kowallis, Mike and Ruth Knight, great grandparents, Calvin and Reda Kowallis, Ann Norman, Rhea Swain and Inazelle Knight.
Funeral services will be held Saturday November 3, 2012 at 11 am at the Roosevelt 2nd/11th LDS Ward building. Viewings will be held Friday evening from 6-8pm at the Hullinger Mortuary and Saturday at the church from 10-10:45am.
Burial in the Roosevelt Memorial Park.

Tacen's Funeral Info

Funeral services will be held Saturday Nov 3 at 11am at the 2nd/11th ward lds chapel. A viewing will be held Friday night from 6-8pm at the Hullinger Mortuary and from 10-10:45 Saturday. All in Roosevelt, UT. Thank you for all your love and support during this difficult time! We have felt the spirit of our Heavenly Father carrying us through this!
To see the obituary or find out more information see link below:
http://obituaries.expressionstributes.com/?of=8a04263734

Tacen

Our sweet Tacen returned back to a loving Heavenly Father last night Oct. 29th.  We are hoping to have services to celebrate Tacen's life in Roosevelt, UT. Viewing Friday night from 6-8pm and Saturday viewing 10 am and funeral at 11 am unless they can't get his body to Utah in time.  We would love for any and everyone to come and celebrate his life with us!

Recording a Feeling

I was sitting thinking of Tacen reading a sweet friends blog about her son who passed away while I was up feeding Iszella (8.18.14) and it reminded me of the night before Tacen passed away. I hadn't recorded these thoughts and felt prompted that I ought to. It was Sunday evening Oct 28, 2012 and Tacen had taken a turn for the worse as he often did at night. I had come back to the hospital at like 11pm. They had Tacen on the highest form of respiratory life support the oscillator and his lungs were beginning to fill with fluid. After that there was nothing they could do.

Cade and I asked for some time alone in the room with Tacen. We discussed how we knew that if it was Heavenly Father's will that we had full faith that Tacen would be healed, but we also knew it might not be Heavenly Fathers will for us or Tacen. We came to the decision together that we were tired of seeing Tacen's health declining and if it was His will to heal him we knew it would be so. If not we were prepared to let him continue his journey. 

Our sweet Bishop, Vince Longshore was there (I know he and his sweet wife must have been as exhausted as we were because not a single day went by that they didn't come and sit with us). After Cade and I had come to that decision we asked everyone to come back into the room. Bishop in his wisdom asked if we had told Tacen it was ok for him to go. He said these spirits can hold on. I knew then we needed to tell Tacen how proud we were of him and that we knew he had fought hard. I had sat at his bed side many times asking him to fight to stay with us and I knew he'd done just that! But I also knew we needed to tell Tacen that if it was his time to go we would be ok. That we understood it was Heavenly Father's will and we would be accepting of that.

I tried to sleep at the hospital that night. It was choppy sleep as I worried any second might be his last. My sweet friend Brenda had stayed the night with Daxon who spent a large portion screaming. I know she was also running on fumes! 

The next day there was an obvious difference in Tacen. His eyes would occasionally roll open and you could tell they didn't have their sparkle. It was as if we could tell his spirit was gone for most of the day. 

We knew that evening it was time to say good bye! I'll never forget holding my sweet boy and singing I Am A Child of God one last time to him here on the earth! We felt his sweet spirit enter his body one last time right before he passed. We knew he was with us and telling us goodbye! We were able to hold him near as he took his last breaths! 

Not a day passes I don't think of our sweet boy! Not a day passes that I'm not a better person because I was able to be his mother and have him in my life! I love you Tacen! I miss you! 

Tacen's Story

I need to get this written out here goes...
Thursday Oct. 18 we flew out from Utah to meet up with Cade in Fort Worth. I'm usually so sad to leave Utah, but this time I was so excited to get back to Cade.  We got there and Tacen was super excited to see his Daddy. He just hugged onto him and rested his head on his shoulder.  That evening we were in Olive Garden getting dinner and he threw up.  We thought it was really strange.  We figured it must be his milk mixing with Cade's lemonade it was drinking so quickly.  We ordered food to go and went back to the hotel.  He then proceeded to eat 1/4-1/2 of the bowl of chicken gnocchi soup I had ordered.  We figured he was fine. We got up Friday morning (10/19) and he ate some pancakes and was doing fine.  We took him swimming and also to the stockyard.
Afterwards, we left to head home. There was a Costa Vida not far from us so we decided to eat there. We stopped at a Wendy's to get Tacen some chicken nuggets.  They had a meal for $1 more with apple juice and apple slices. He picked the apple slice over the nugget and was eating it away, when he proceeded to vomit again.  We were really concerned at this point.  We were trying to watch what we were giving him to eat.  He seemed to be keeping things down so when we stopped off for dinner we got him some Mac and Cheese from KFC and stopped at a Quiznos for us. While inside he vomited yet again. The previous two times he'd been watching the iPad. So we began wondering if he was getting car sick.
The rest of the drive home we monitored what we ate and didn't let him watch any more iPad. We arrived home at midnight. Saturday (10/20 - Cade's 26th Birthday) Tacen slept til 7am. Cade got up with him and gave him his Baba and then made him some eire kuchen. It was some he'd made before he left, so I tried it first before feeding it to Tacen. He at 2 and drank some juice and was doing great. He grazed and had his baba throughout the day.  That evening he had spiral mac and cheese and ate great!  At this point he had regressed and was no longer walking. He was getting his last two top 2nd molars and we were anticipating a regression. We had planned to call Dr. Fulton Monday morning.  He was so exhausted. He took 2 - 2-3 hr naps and then slept a solid 12 hrs that night.
We had decided to just take Tacen to sacrament and then leave since he was in no condition (not walking) to go to nursery.  Sunday morning (10/21) we got Daxon down for a nap and Cade and T were watching TV, so I went back to shower. While I was in the shower, Cade brought Tacen back and he had thrown up again.  This time he hadn't been in the car for over 24 hrs. So we worried we were missing something.
Cade called our pediatrician office and got the weekend clinic. They suggested after hearing some of his history that we call the neurologist. We got the on call neurologist who suggested we got to the ER.
We debated, but decided we should take him in. We waited a little in the waiting room and were back in a room within 30-45 minutes. Then we proceeded to wait for 3 hrs with only seeing a couple nurses for a few minutes and a 3rd year resident. We were tired and frustrated and decided we'd just go home and call Dr. Fulton first thing Monday morning. Unfortunately he threw up on the way home, but again we wondered if it was related to the car.
First thing Monday morning at 8am (10/22) I called Dr. Fulton's office and spoke with Nurse Lana. She took all the info and promised they'd call. I took the boys out running and tried to have a somewhat normal morning. Tacen took a 1 1/2 nap and was just tired. He just wanted to sit on the couch and watch T (TV).  He also really wanted me close by and if I left the room to help Dax he'd get off the couch and then just lay in front of it and cry.
Dr. Fulton called back around 1:30pm. He was concerned and decided our best move would be to have Tacen admitted into the hospital. This way we could have all the imaging and testing down without waiting like an outpatient was taking. Dr. Fulton explained that when Tacen was home and doing well he didn't mind waiting, but if he wasn't doing well he wanted to get to the bottom of this sooner than later. We needed to go into his office and then they'd direct admit us from there.
Cade had a test and once it was over he came right home, we loaded up and left. Poor Tace threw up on the way there. When we got there they got us right in and Dr. Fulton met with us almost immediately. He was concerned and ready to move forward. We are so thankful for his concern and insight. While waiting to be admitted, Tacen asked for Cheerios and Balls(Trix).  He seemed to be alright so we let him eat them.(This would be one of the last things he ate in days).
They took us up and admitted us. Tacen was doing ok at this point. He wasn't walking or interested in crawling, but was still moving his entire upper body and doing well as far as that is concerned. He was still talking and very aware of things. Our sweet friends Jordan and Jen and their darling girls came and brought pizza, chips, cookies and drinks. We really appreciated them.  Daxon and I stayed a while and then left so I could get him to bed. Cade spent the night there. They wanted an IV in him to get fluids since he'd been vomiting so much.  They had a hard time getting it and ended up using an ultrasound.  They wouldn't give us a definite time on the MRI scans set for Tuesday morning(10/23). Through all this Sue decided to come back. She got a ticket out of Salt Lake for Tuesday morning and planned to arrive at 1:45pm in Memphis.
Dax woke me up at 5:45am he went back to sleep, so I got up and got ready and go things ready to go. I was waiting to hear on a time before I woke Dax up. Cade called at 7 to say they were getting ready to take him and had just now informed him. I hurriedly got Dax up and fed and took off. We hit rush hour and didn't make it before they took him back. We arrived in time to wait for him to come back.
Once back out they said he head would be weak and to support it. He still wasn't moving his legs at this point.  Within an hour they had the results and said it was an Artery Ventricular Malformation(I think).  They said there were large arteries feeding directly into veins and this was causing a build up of fluid. After his MRI he kept asking for his blankey. I climbed up in bed with him and sat behind him and just held him. He drank some juice and water and then threw it all up. We were waiting to hear from the neurological interventional specialist when Cade's mom was landing. So I loaded up Dax and we went to get her from the airport. We were so thankful for her willingness to pick up and come and to be there with us. While we were gone Tacen asked for a cookie and cracker. Cade let him eat 1 saltine cracker and 1/2 a cookie.
By the time we got back they wanted to take him to the cath lab to put in a catheter in his leg and take some pictures of his spine to see if they could find the spot which was causing the problem.  We thought it would be later that afternoon and before we knew it they were ready to take him. It was emergent enough that they weren't even concerned that his stomach wasn't empty enough. We were ill prepared to head down, but just went.  They took him in at 3:30pm.  They told me they'd call at 4pm with an update and then every 1/2 hr after that. When we got out of the cath lab Cheryl Longshore and Beth Jones were there waiting for us. They waited in the waiting almost the entire time he was back there. We also had Craig Moss & Michael and Krystal Cole come by.  Later Craig and Katie Moss came back as well as Sam and Michael Richardson bringing us dinner. They were all such great support and distraction. It felt great to laugh and feel light hearted after such a whirl wind of a day.
After working until 8:30-9pm they came out and had been unsuccessful in their intervention.  They had attempted to block the artery they thought was the culprit with some permanent adhesive and it didn't work. They wanted to look over the images and decided where to move forward from there. They took him up to the PICU (pediatric intensive care unit) for monitoring all night.  When I went back to see him he was asking for, "Wa(water)."  I told him how much I loved him and then headed out with Daxon to get him some sleep.
Throughout the night he asked for Wa, his baba and blankey a few times.
(10/24)Daxon and I went home that night and besides getting up at 4am to feed Dax, I slept until Cade texted me at 7am.  It got up and got ready and Dax got up at 7:40am. He ate, got dressed and we headed out.  They were still discussing options and decided when we got there they'd take him in for another more specified MRI and a CT of his upper head since his upper body movements were much less than they had been.  They were trying to figure out exactly which vein was the problem area.
From the imaging they could see that there have likely been a serious of mini strokes in his spine due to the build up of fluid.  They were concerned that if they didn't do anything that eventually he'd stroke out. If they did the surgery they could clip the vein and it could feed into the spine and cause and stroke and paralize him. We didn't really feel like we had many options.
I took Daxon home that night.  At 12:30am(10/25) Sue called to tell me he had kidney stones, they'd given him Ibuprofen and water.  After I got off the phone it didn't all fit together, so I called Cade and he had kidney stones not Tacen. Mike Jones and Bishop Longshore were going to come give him a blessing. At 1:15am Cade texted me and they were worried about Tacen's breathing. I called and we decided I should come. I called Brenda Griffin and she agreed to come to be in the house with Daxon. I pumped threw some things in a bag and left.  I tried to called Cade to find out what was going on and he didn't answer. I called Sue and he couldn't really tell me much. I could tell it was bad, but didn't know how bad. I prayed hard that he would make it for me to get there!
When I got there his breathing was shallow and they put a breathing mask over him. His oxygen came back up and he seemed ok although his breathing still seemed strained. Bishop and Mike gave blessings to Cade, Tacen, me and Sue. Beth Jones was also there and she told me she felt impressed to tell me that I could do this that I was strong enough to handle this.  Then they left and we tried to get some sleep.  At 7am they had to intibate him because he was struggling too much to breath on his own. This was good though because it would/will take the pressure off of his body.
Dr Klimo (one of the best neurosurgeon's in the country who also happens to be LDS) came in and said they'd be taking him for surgery between 12&1pm.  Then an hour later he and Dr. Elijovich came in to say they'd just gotten off the phone with a Dr. from John Hopkins who has seen 1 case similar to his. The images look very similar, although the symptoms vary greatly. They said that the surgery wouldn't do anything and there was nothing they personally could do. I asked if there was a chance we could lose him. They said there was.

Today was a good day(10/26/12)! Tacen stayed stable throughout the night. His oxygen leveled out and stayed high and his BP came back up where they like it.  When I got there this morning the only problem was a elevated temperature.  They worked on regulating that. They took him off the versed to see if they could get him to wake up. They took him off at 6am and figured it could take until as long as 2pm before it would be all out of his system.  He remained stable throughout the morning.  They slowly weaned him off of 3 different meds and also lessened the oxygen and nitric.  They had him down to 48% oxygen and 1 bp(something) of nitric. I guess they never have to leave it just one, but Tacen is stubborn.  His saturation was staying at 99-100 this way! Yay!  Early afternoon his cracked his eyes and grimaced. We were SO excited to see some reaction and movement.
They sucked his mouth and nose and he had great facial movements and grimaces later in the evening. It was obvious he didn't like it! Cade read him a couple stories and could tell that he was moving his eyes and following the book! Cheryl promised him candy and he cracked his eyes for that.
Once I got home this evening Cade called to tell me he opened his eyes all the way! Yay! It's been such a good progressive day! This is just the day we needed after such a rough day yesterday! We are hoping and praying for another good and progressive day tomorrow!
Sunday evening(10/28/12) his lungs were beginning to fill up with fluid. They put him on an oscillator(the last respiratory treatment they could try).  Sunday night was the night we realized he wasn't going to be with us here on earth any longer. He stayed mostly stable through the night and the next day. We had our time with him to snuggle and say our goodbyes. Due to all he swelling around his spinal cord his body couldn't work the way it should and he was having respiratory failure. By Monday evening(10/29/12) we knew we needed to let him go that Heavenly Father needed him and his plan was not for a miracle to happen.  We were able to hold our sweet little boy one last time as they with drew life support and he left his frail body and returned to our Heavenly Father!  We will miss him every day of our lives, but we know he is in the Celestial Kingdom. We know that Heavenly Father has something bigger in store for him.  We know that if we live worthily we can be with him again and raise him during the millennium! We will always miss our sweet little boy!

MRI Results

Our Dr.called us back yesterday afternoon. Cade was of course at school so that left me taking the call and trying to get all the information.  He started out by saying that there was no tumor or sign of stroke. At that point I was unaware we were worried about that, but at the same time relieved that it wasn't that.  It's not the tethered spinal cord or pedicles (pinched nerve).  What the MRI showed was a string of cells showing up with an abnormal intensity from the anterior of the spine down to the lumbar (from top to bottom) on both the left and right sides.  It was showing a brighter signal where it should have been grey on the MRI.  After speaking with 2 radiologists and 3-5 other Dr.'s (one being a 70 year old Dr., who maybe affiliated with UT Medical) and none of them know what it is exactly.  Moving from here we need to get 2 additional MRI's. One of his spine again this time with contrast and then also one of his brain to see if the string of cells continues into his brain.  The spine MRI will take 1 hr 45 min - 2 1/2 hrs and the brain MRI will take 1 hr so depending how the anesthesiologist feels about Tacen being put under for that long will determine if we have to go in for two separate visits or just one.  We are really impressed with Dr. Fulton. He's been great so far! He told us if Tacen has a relapse he wants to see him. He also asked how long this had been happening and we said about 1 year. He said that because it's been happening so long, that helps rule out a lot of the "bad" things because he would have gotten sick and stayed sick.
Then last night Cade was working on some flash cards and I was getting Daxon ready for bed when my phone rang. When I looked at my phone I thought the number looked similar to the one Dr. Fulton called from earlier that day. It was 7:30pm so I thought it can't be him. I answered it and sure enough it was him.  He wants to know if Tacen had his polio vaccination.  I haven't been able to get that information from our old Dr. yet, but I will soon. He said that his symptoms mirror some of those of polio, but that it doesn't last.  It was nice that he called because Cade was able to talk to him and get the answers to questions he was having answered. Since Cade knows the medical lingo better and knows what to ask better.
There is also a possibility it may be a genetic thing. However, we really won't know much more until the MRI's. They are meeting with other Dr's at Le Bonheur on Thursday to discuss Tacen's case and see if anyone else has seen this. 
So at this point that's what we know. Not a lot unfortunately.  We are extremely thankful that our Dr. is working so hard to help our little Tacen. He told Cade that our son is going to be on his mind until they figure it out.  We are also trying to keep a positive attitude until given a reason to think otherwise.  We'e bummed out that this won't be a quick fix, but we are hoping that we'll get to the bottom of it eventually.

MRI

Miraculously they were able to get an MRI scheduled. I got a phone call Thursday morning saying they needed some more information regarding Tacen's Sept. 5th appointment. I said can you please tell when what appointment you're talking about.  They told me that it was his MRI. I didn't complain because that was 3-4 weeks sooner than expected.  After I gave the gentlemen my information I asked him if he could tell me the time. He then transferred me over to radiology and they told me it was at 7:15 am. I asked if we needed to arrive early and they said no just be there at 7:15am.  We were stoked and planned accordingly. 
Saturday we got a letter in the mail from the neurology department saying our appointment was at 6:30am and if we were more than 15 minutes late that would result in rescheduling.  So we replanned and planned to be there at 6:30
Now to today.  Cade and I got up at 5am got things ready, I got Daxon up to eat and then after we had everything loaded and ready to go we got Tacen up and put him in the car knowing he wouldn't be able to eat or drink anything.  We left our house at 5:45am.  We arrived at Radiology at 6:25am.  We got all checked in and they took us back.  We were in our room when a nurse came and said that we were a little early and they hadn't forgotten about us, but they'd have to take the child on the schedule before us back.  Long story short with this part we weren't supposed to be there until 7:15am, our scan wasn't scheduled until 8:15 and they didn't even get it started until 9am.  Poor Tacen.
So we hung out in our room for quite some time, trying to keep Tacen distracted.  They needed to do an IV before taking him back to be put under and do the MRI.  They came in and after trying 6 times, they couldn't get it. Poor Tacen was a total trooper. He held quite still, but cried a lot.  We felt terrible for him.  As usual he hated having the band aide on most of all.  After 6 failed attempts 2 in each hand and 2 in his left arm, they decided it would be better to give him a little gas, then put the IV.  We agreed, Cade went back with him and that went quickly.  Then we waited for an hour.  They told us they'd call when he was out. They called and said he was out and already awake. We felt bad, because we wanted to be there when he woke up.  I guess normally they take a while to come out of anesthesia, but he woke right up as they were taking his vitals.  He was roaring to go. They still had a blood pressure cuff on his leg and the IV in his foot and he wanted those gone.  Then they put a bandage on his foot and he wanted that off.  He walked (quite wobbly) out to the stroller and was ready to go.
He did so well today. He didn't have any problems besides being a little tipsy. He was a live wire all day. He was running around, climbing, getting into things, normal Tacen.  They said it would take up to 24 hrs for the scans to be read. Unfortunately, our Dr. is out of the office until next week, so we are figuring the earliest we'll hear will be Monday.  More to come...

Ps as a side note. We were driving home after the MRI and we were trying to find some place we could get some apple juice for Tacen.  Cade was driving and I saw a pedestrian almost cross the road, I looked up and noticed the light was red and Cade kept driving. Normally I would have said something, but I didn't and Cade drove right through.  Then I looked over and there was a cop sitting right there. Only in Memphis, would you see a cop watch you run a red light and not get a ticket...Needless to say we were worn out at that point of the day.

Tuesday and Tace

Tuesday(8/28/12) was official doctor day.  Cade and I wanted to go to a dermatologist to get an overall check. With me being so fair skinned I try to stay on top of this. Since I had met my deductible having Daxon I figured why not. Cade had never been so we thought it might be wise for him to have an overall check as well.  We checked out great. I had a little wart burned off and that was it.
Then in the afternoon we had Tacen's appointment with the neurologist.  We'd been waiting since July 27th to get in.  Over a month!  We left early since we'd never been there and we knew we were supposed to arrive early.  It was a good thing because it took us a little while to locate parking and then go through the maze to get into the building. 
Here's what we found out!  Dr. Fulton checked Tacen over.  He checked his reflexes, and muscle tone all over his body.  Then he watched him walking and moving around.  We'd taken a new hot wheels car in the diaper bag for when we got out, but he found it and wanted to play with it. It ended up working out great because it distracted him and he played just like he normally would.  The Dr. said neurologically everything checked out great and that it thought his hindrance to walking could be 1 of 2 things. He either has a tethered spinal cord (which means in the womb his spinal cord never detached from his spine) or his pedicles of his lower lumbar are too close together (meaning his spine pedicles are causing a pinched nerve).  We won't know for sure until we get an MRI which unfortunately we won't be able to get for 4-5 weeks. There are only two machines in the Memphis area that service children.
If he has a tethered spinal cord it may be able to be surgically detached.  However, the cord looks very similar to the nerves for his legs and if cut wrong could cause paralysis.  There is not 100% chance this will be operable. If not than basically it would probably be something he'd have to learn to live with. If it is operable there is a specific spine dr we will see. Dr. Fulton said that he is the only guy he would let operate on him and that he was the guy we would see for this. That is comforting. All he does is work with the spine.   The better situation is the spinal pedicles. It sounds like the surgery is easier to do.  There is also a possibility that it is neither of these and then we're back to the drawing board.  Yet, we won't have any idea until the MRI which he will have to be sedated for.  So yet again we sit and wait.
We really want to get this figured out and taken care of for Tacen, but more than that we just want everything to be alright. Its hard to hear that your child has something that might need surgery. It scares me at the thought of losing him.  We are trusting in the drs though and asking lots of questions along the way!  We are also praying that all will go well. Stay tuned...

PS here's a few more things I wanted to remember about Tacen at his appointment. When Dr. Fulton checked his knee reflexes he picked up the hammer afterwards and tried to check them himself.  Dr Fulton was looking him over and asked him to sit in his lap, so he did.  He also kept dropping his car behind the dr. table and saying, "Uh, Oh!" a usual at dinner time.  The Dr. soon figured out this was a game.

Tacen's Walking

Tacen began walking when he was 10 months old. He did NOT want to crawl. He had the toddler toddle for quite a while. We kept thinking he'd grow out of it. A few times he even make progress towards running, but then he'd some to regress without any explanation.  Then we thought it was related to teething. He seemed to struggle and walk less when he was getting molars and eye teeth.  However, he had a really bad period of walking in March of this year and he wasn't teething. 
When we were in Utah in June we went to see Cade's cousin Bryan who is a podiatrist. He looked him over and noticed that his hamstrings were tight. He gave Cade some stretches to do and recommended that we see a Pediatric Orthopedic Doctor. Cade started doing the stretches and we saw some improvement. He was close to running yet again, but still isn't quite there.
We had Tacen's 2 year old appointment July 2 and we got a referral from our pediatrician for a Dr. Beaty at Campbell's Clinic. We called and made an appointment. The earliest they had was July 27th at 9am.  We took Tacen in. He did really well! He let them take his blood pressure while sitting on my lap, he let the doctor check him out and watch him walk and with my help of holding his toes he let them take a lower body x-ray!  Dr. Beaty came back to us to let us know that he checked out fine as far as his bones and alignment are concerned.  We are now in the process of meeting up a neurologist.  We will see where we go from there. Hopefully we can find some answers.
They gave Tacen a little gown to wear and he pretty much hated it. So we took it off, but I wanted to remember how cute he looked in it!