Manwaring Established 2003

Miracles really do happen!
I have been hesitant to write this down as it brings it all back to life and in a way I just want to forget that it happened and get on with life, but our blog is our family journal of what is going on with our lives, and this definitely has been a big part of our lives this summer. We really have been blessed and spiritually strengthened this summer and that is the part I don't want to forget.

Sharing time in primary this month is "Jesus Christ is a Son of God, and He is a God of Miracles" I have really enjoyed re-reading the stories of Jesus, the miracles he performed and the people he healed while he lived on the earth. We really have so much to be grateful for and feel that we have had our own miracles this summer.

Thursday June 24, 2010

Benjamin was on day 4 of Cedar Badge. That night I noticed Spencer’s eye lid twitching for a few seconds like some strange muscle spasm. Didn't think too much about it, but then later in the night his eye lid was twitching in sync with his arm and leg all on one side of his body for about 20-30 seconds. I started to panic and freak myself out… what is wrong with my baby? am I just tired and imagining this? Since Benjamin was gone was I just worrying over nothing?! I started to look up youtube videos of children with seizures. I noticed that most of the video the children had a glazed look and couldn't focus on anything. The few times that I had seen Spencer do it I could still get him to follow my finger while it was happening. After it happening 3 times in an hour I decided to call the Dr at 1 in the morning for another opinion. I called and a half awake Dr. answered saying that if I was really worried I should take him to the ER, but otherwise wait until morning and take him to the office. I had videoed his twitching in case he stopped so I could show the Dr if we ended up going to the Dr's office. I said a prayer trying to figure out if I should wake family to come watch Eli so I could take him to the ER or if I should try and relax and go to sleep and pipe it up to being alone and making a situation worse than it really was. A calming peace came over me and I was able to put Spencer in his bassenet and go to sleep.

Friday, June 25, 2010

I watched Spencer closely all morning, but he seemed perfectly normal. His eye lid twitched once before lunch time, but not his arms or legs. I still didn't know if I really had seen his arm and leg twitch because when it happened during the night it had been so brief. That day was supposed to be a fun girls day celebrating my sisters Birthday, so I dropped Eli off to Grandma Anna and headed to shopping and lunch with the girls. Spencer's eye twitched again, but briefly so I dismissed it as unusual, but not a big deal. Then after lunch he started twitching more frequently and his arm and leg along with it. It would happen on the right side, stop, and then switch to the left and so on. My mom, sisters, and I decided that I should at least take him to the Doctor since it was a Friday afternoon and I didn't want to worry about it during the weekend. I was supposed to go to Treasure Mountain the next morning for the closing ceremony at Cedar Badge and pick Benjamin up.

I made an appointment with the Dr and in the hour waiting for the appointment Spencer started having the twitching more frequently(1 every 10-15 minutes) and wouldn't eat. As soon as we got into our room at the Dr's office he started twitching with arm and leg for the Dr to see (didn't have to show him a memory card almost full of videos of him) we were told to go the hospital for blood work and then go from there. I went to my mom's house to drop her off and feed Spencer then was going to head to Anna's to pick Eli up when I got a call from the Doctor telling me that the blood work had come back and his sodium level were really low. He needed to be admitted to the hospital immediately and the Dr would meet me there. There is nothing worse than being told that you need to get your baby to the hospital. Your world stops and you don't care who is around or what else is going on...you just kind of end up doing what you have to do without thinking. My Dad was able to give me a blessing then my mom and I headed to the hospital not knowing what was really going to happen. As soon as we got there they told us they needed to give Spencer an IV to get sodium drip going. They had a hard time getting the IV in and ended up trying 6 plus times (that is what I counted before I had to leave the room) and 3 people later to get one in his arm. I was a mess. 7 week old babies are not supposed to be getting IV's and getting poked at!!! Gregg, Jarom, and Elena showed up during all the poking and really found me at my worst!!! Thankfully there are no mirrors at the hospital! I know I was a mess when we went to the cafeteria and the nice subway worker gave me free cookies!!! :)

After the IV was in Gregg and Jarom gave Spencer a blessing and to be perfectly honest I don't remember a word that was said except that I felt peace that everything was going to be alright. My mom later reminded me that he said "your body will be made whole."

Since Benjamin was camping with limited cell service (he would have to get in the canoe and go to the middle of the lake or climb a hill for reception) I couldn't just call him and let him know what was going on, instead I called Lesa since Chad was also up there and figured she might be able to find a number to reach him. I had last talked to Ben that morning and told him I would see him the next day at Treasure Mountain and then he had shut his phone off. Lesa spent over an hour making calls and leaving messages on cell phones, text messaging, calling the general store in hopes of finding the number to Treasure Mountain which is not listed anywhere! She called wives of husbands who were up there in case they talked to their husbands and we could get the message to him. Gregg and Jarom were just getting ready to leave the hospital and go to Treasure Mountain to pick him up when I got a call from my brother saying they just got the message and they would go find Ben and get him on his way. I later found out that they had gotten the message through a text message. The girl’s phone had only received that one text message that night and didn’t receive another one until driving home the next day when cell service was back. She then received other text messages that had been sent to her before and after the message for Ben. It really was a miracle! Ben left and drove straight to the hospital. My brother and the other staff were awesome and packed up his things and brought them home for us!

Spencer continued to have seizures here and there in the night, and then Saturday morning they became more frequent. He had them for 4 hours straight with 20-30 seconds in between. They would last anywhere from 20 sec to 3 minutes. He became very lethargic and wouldn't eat. They would not give him anything for the seizures unless they were over 5 minutes long without pausing so we had to just watch him get weaker and more tired having seizures that stop and go, stop and go. We sat there watching him and timing each one then writing them down. Around noon he had one that lasted 8 1/2 minutes which is when it was time for seizure medication. The phenobarbital makes a person very drowsy and Spencer was already exhausted from seizures all morning long. He didn't eat for 24 hours. Meanwhile his sodium level that was 126 when we went to the hospital had dropped to 124 even with a sodium IV. The normal level and goal was to get it to 136.

In the first couple of days he was given a spinal tap to check for meningitis-normal, sweat test for cystic fibrosis- normal, CT scan-normal, ultra sound on the kidneys-normal, EEG- showed seizure activity, Blood work every 4-6 hours checking medicine levels and sodium . Test on the kidneys and bowels to make sure that they were developed properly. They did find that he had a urinary tract infection and gave him antibiotics for that. They were able to do most of the tests quickly especially considering it was the weekend.

Over the next few days his sodium levels would raise and then drop with no consistency even though they were pumping sodium in through the IV. Day 3 of the antibiotics his sodium levels began to even out and rise. His seizures were far and few between with the medication. He was acting more alert and active. We stayed in the hospital for 7 days total. The first 5 were full of tests and blood work, the last two days his seizures were under control and we were waiting on his sodium to be normal before we could take him home, but we still don't have for sure answers as to why it happened. We do know that once they treated the UTI his sodium levels evened out so they were probably connected and could possibly have caused the seizures, but we don't have any definite answers. We took Spencer home with the phenobarbital (seizure medication) and we are going on 6 weeks being home from EIRMC. We have been gradually decreasing the phenobarbital and now are on day 4 of no medicine. He has had around 3 small seizures since being home, one happened just last Friday.

At one week from being home from EIRMC we took Spencer to Primary Children’s Medical Center in Salt Lake City to have an MRI done (he had to be put under for this and they don't do this with infants in Idaho) and consulted with a child neurologist. The MRI came back normal and the child neurologist agreed that it is possible that the seizures could have been caused from low sodium, but nothing is definite and we just have to keep watching him and hope that he grows out of whatever it is that causes him to have seizures here and there. We are glad that all the major tests came back normal so at least the serious diseases have been ruled out. He is much more active and alert with lower doses of the phenobarbital and for that we are thankful!

Eli was a good sport through it all and had a blast with Grandma's, cousins, and friends! It was a hard adjustment for him, but we are finally getting back to routine and "normal" life. It took about 4 weeks before we could drive past the hospital without him getting quiet and watching it closely to make sure we weren't going there. When I was up in the hospital with Spencer, Ben drove past the hospital and he would cry "mama, baby!!" He is too little to really understand other than it changed his world and he is happy to be back to normal.

We have felt so blessed and thankful to be able to be home with our two sweet boys and just be together as a family! This ordeal has brought us closer together and with trials you really realize what is important! We are so thankful for all the help from family and all those who watched Eli and let him stay in your home and for those who took care of us. We received so many calls of concern that we couldn't keep up with them all! We are thankful for good friends and family who helped us in so many ways! Now we hope to be able to enjoy the rest of our summer!