We went to Eli's Neurology appointment today and had a good chat with the Dr. I think we will be switching over to her from her previous Dr. I like her better. We discussed all that has been happening with the boy and showed them the video and they came to the conclusion that he is having seizures.
We are now on the course to figure out what is causing them and getting treatment. We will be starting him on medication this week, and then we will have them do another MRI to make sure his brain developed properly. (Our insurance is going to love us.) We had multiple blood draws today, it made him sad. They ended up putting the needle in his hand since his veins kept rolling in his chubby arms. We will also have to take him to an ophthalmologist to get his eyes dilated to see if they can find any cause there. I am going to try to squeeze him in with Ruby on the 30th for her appointment. It was quite a long day at the hospital we were there for 4 hours.
I am feeling relieved that we are on the right path to getting things under control. So grateful for excellent medical professionals that are so attentive to his needs and our family. Kami was a saint and had our girls for over 5 hours today. She took such good care of them and even fed them dinner even though she wasn't planing on it. She is truly salt of the earth. Our family is so amazing, I can't say enough good about them.
We were able to cancel Eli's Gastro appointment, as that isn't the problem of causing his seizures and I had Jed call to cancel and they were going to charge us a fee for canceling without giving them 24 hour notice. Jed was firm with them and talked them out of charging us, I knew Jed was the man for the job. I would have been a push over.
Things are coming together. We have experienced so much kindness, I am overwhelmed by the love that has been expressed on our behalf.
He has been rolling over for a little over a week, and loves to laugh when tickled. He is still as content as ever and brings us so much happiness. We are so blessed he is ours. And I always have to laugh when the girls say "Can I hold The Bub?"
Had a good visit with Dr. R, as Eli has been having more episodes (not really sure what else to call them) I have noticed other things he has been doing which leads me to belive it isn't reflux related.
-We haven't seen any pattern, even when we keep him upright all day, it doesn't matter his position they still occur.
Dr. R agreed that it does sound like seizures, which can be caused by multiple things. He was able to get us an appointment with the Neurologist for this afternoon. He also recommended recording an episode as it can help with diagnosing him or being able to see exactly what he is doing. Gratefully we were able to record it on Friday while Jed's mom held him. It was so hard to just stand there and do nothing but I know it will help them get a better idea. It also made me realized that they are lasting longer than I thought.
He hasn't had an episode since Friday, I am happy about that but in the back of my mind I remember that he went 4 days with nothing and after that they started up again but with the convulsing.
Jed and I had the opportunity to attend the Temple on Saturday. It was so needed. The peace was so sweet and I felt assurance about the unsure things happening in our lives right now. I will try to update tonight and I will have a happy post up shortly. Even when it feels like so many things are going wrong, life has a way of bringing reminders of how sweet life truly is and that it is the small things that truly bring us joy.
Yesterday evening we took the kiddos on a walk and when we got home we were playing on the floor with Eli and all of a sudden he started having an episode but he was shaking and his limbs were jerking. Jed immediately took him from me and gave him a blessing, and instantaneously the convulsions stopped. It was so scary. I was bawling.
It has been so strange, after starting the meds he didn't have any problem for 4 days and then on Monday he had two and then they have been increasing more so yesterday and today, but when he started convulsing it put me over the top. I called his Ped this morning to see if they had the results from the EEG, they didn't so they said they would call me back.
The EEG came back normal so he doesn't have epilepsy. That is such great news! Dr. R thinks that it is connected to reflux. If you don't get enough oxygen your body can shake. He is trying to get us a more advanced appointment with a gastrointerologist as it usually is about a 2 month out wait. He recommended after eating keeping him upright for an hour so it has a chance to digest. I am so relived that it isn't seizures.
Yesterday was quite a day. Our house hasn't gotten the loving care it needs since we were so busy working on getting everything together for my mom's party so we spent most of the morning putting things back in order and then Ruby spent the afternoon playing with friends. I was down stairs when I heard someone come in the door, I called for Ruby and instead the response was "No, it's me." I hurried upstairs to see why Jed was home so early. Turns out that his companies owners have decided to turn the company over to a property management company. Jed's original boss passed away about a year ago and that has complicated things, but this is the last thing we expected.
I have felt numb at times but I feel like there is a new opportunity on the horizon and I know that something will work out. I am feeling very much at peace, and am so thankful for the wonderful support system we have. Life throws curve balls, but this is one I feel will work out to be a blessing.
The day that we scheduled Eli's EEG, I got a call from Dr. R with the recommendation that we put him on an acid reflux med to see if it would help reduced the amount of episodes he was having. I questioned him about it because Eli had been on Prevacid before and he was still having episodes and then once he was off the med they gradually went away. He said it was at least worth a try and that if it was working we would see a difference in 1 to 2 days. So we had the med called in, and gratefully it was only 1o dollars as compared to his 174 dollar Prevacid.
The first day that he took it was Wednesday morning and he still had episodes but they were fewer and further between. Since that day he hasn't had one! It is so confusing to me, because most babies I know with reflux are really fussy and don't want to eat much if they don't have meds to help the acid. Eli is so content, so my thoughts are Prevacid just didn't sit well with him, and if it is indeed reflux that is was causing him not to move and hardly breath and make a weird swallowing sound, that must be how he coped with it when the acid would burn him, like he was trying to swallow it back down.
He seems better to me and it has been so nice not having him turn a dusky color due to lack of oxygen, or being exhausted after the fact. These are just my observations since we don't have any actual results back, but I forgot to post about his meds. It has been an interesting turn of events and I would be more than happy to have this be the problem than the seizures that we were previously thinking it was.
Let me say trying to take a 4 month old boy that loves his sleep off that schedule makes for a horrible morning. I got up and fed him at 4 a.m. and then Jed went in to get him at 4:3o since we had to wake him up two hours earlier than normal. I got up with him at 6 so Jed could get some sleep, and then that is when the struggle began. He wanted to go to sleep so badly and so I spent that hour and a half dancing him around, talking to him, putting brightly colored toys in his face, and worst of all throwing him up in the air to wake him up. I can't think of anything he hates more. I wanted to cry.
He just wanted to eat and sleep but I knew if I fed him he would conk out so we held out for as long as possible. By 8 he seemed to be doing ok, and then as we went out the door he got into his car seat and was falling asleep, so we had to do the meanest thing ever. We had to take his clothes off and turn the A/C on. We felt so bad, submitting him to mild torture, but we knew that this small moment of discomfort would be better for him in the long run. What a relief it was to get to the hospital and be able to put his clothes on and get him ready for his test.
We were taken to a room where he got to have his head exfoliated and then have 23 electrodes with conductivity paste on them attached to different points all over his head. Then they wrapped his head in gauze to keep them in place. He didn't love it but was so happy when we finally to got to the point that we could feed him and swaddle him for the test. We sat in the dark with him for 25 minutes while they ran the test and then they came in and put a strobe light right over his face for 3 minutes to see the response to the light. After that we were done and we will have the results in a week.
I learned something from this experience. Sometimes when I go through a trial I think to myself, why do I have to go through this, it's painful and I am exhausted. Just like with Eli, I was right there with him wanting to do nothing more than end his discomfort and hold him close, knowing all the while that if I took that route he wouldn't get the help that he needed, and all of the sleep that he had already missed out on would be wasted. I think Heavenly Father is just like that. He is right there beside us wanting our discomfort to end but knowing that the outcome of our sorrows are far more valuable than if we had never gone through them. He love us enough to allow that. It was so hard to let Eli cry when he was so sad, but I did it because I knew it was the best thing for him. It was a very eye opening experience for me, it helped me realize how very much we are loved.
Lots of things happening around here. I should have posted weeks ago about this, but haven't. Eli's hands are improving and he no longer has to wear his thumb splints or hard casts at night. His PT Chris has been amazing, in helping us reach this point, and I am happy she is staying on with us throughout the year so that she can log his progress and make sure that we are seeing continuous improvement.
On the 24th of July, Erin, Meg and I were involved in potty talk. That weekend I decided we were done with diapers and that it was time for us to take the leap. Monday was horrible as expected, but after that, it got better and better each day and she stayed dry all day on Friday. She has been doing so well ever since. It was a breeze training her compared to Miss Ruby. And as a plus she has been staying dry at night. We are definitely happy.
One evening, Jed put Emma to bed only to hear her "screaming bloody murder" 10 minutes later. He went up to check on her, it turns out that she had taken her pajamas off and replaced them with her 0-9 month robe she wore as a baby and needed help tying it. She slept in it the whole night. The two things I find somewhat funny is that she stayed in it all night and plodded around in it all morning, not caring that it barely covered her keester.
Eli has started having episodes where he checks out for about 15-25 seconds. His eyes stay pretty much in the same place and he doesn't move and makes a very small swallowing sound and taking very small breaths which causes him to turn a dusky color. And then all of a sudden he takes a huge breath and seems to be fine. Except when he has multiple in a close proximity. We made attempts to call his neurologist, so we called Dr. R and he wanted us to bring him in. I didn't have a car yesterday morning so I called my sister on a whim positive that she had already left to go up to Sandy. (She told me the day before they were leaving at 7 a.m. ) How grateful I was that at 8:29 they hadn't left yet. They came and picked the kids and I up.
We saw Dr. R. He said he looks good other than this problem he is having. He thinks that he is having seizures. We have an EEG set up for him on Thursday so that they can monitor his brain waves and see what is happening. The challenge of this will be that we have to put him to bed one hour later and wake him up two hours earlier, so we will be getting him up at 4:40 in the morning and keeping him awake until 9:30. It will be quite a feat with the fact that he likes to sleep, his episodes make him tired and we have a 40 minute car ride. They said if he falls asleep they can't do the test so we will do everything we can to keep him awake.
I am hanging in there, and the real challenge for me is seeing my sweet little guy having to deal with this. He is so patient through it all. I know that Heavenly Father is aware of my son, and that whatever the purpose of this current trial, we can and have felt His love for us and are assured that we are never left alone.