Surgery, MRI, & Good News

 

 

 

We left for the hospital this morning just before 5am amidst snowy and very cold wind chill temperatures. Elias' pre-op report time was 6am After a long day at the hospital yesterday for IVIG we were still a little groggy and not really feeling the long day ahead. Fortunately for us the snow was light and the roads were fine. A good beginning to a good day. 

 

 

Today's O.R. time was the least complicated we believe Elias has ever had. Today he would be out under general anesthesia for dental screening cleaning and oral cancer screening, quite common among Fanconi Anemia patients. While under he would also have another MRI to screen for more seizure evidence. All in all minimally invasive, but with Elias anytime he goes under anesthesia it is a risk, for several reasons and keeps his doctors and us on edge. Elias did great and woke up quickly in recovery. Which was a good thing since we had another appointment following the surgery. Yes we pack it in don't we! The dentist was please with what he saw. Elias teeth are healthy and strong despite not being able to take any food or drink by mouth. There was no cavities or decaying either. Because of his NPO status he had quite a build up on his teeth, but that was all cleaned away and Elias' pearly whites are gleaming. We were happy to hear the things the dentist did not see, no cancerous looking spots. Head and Neck cancers which include the mouth are highly prevalent. They complimented us on how well his teeth have been cared for. In fact they noted that Elias presents older based in his teeth structure. Elias ahead of the curve on something? That was a rare gem to hear.

 

The was Neurologist happy with Elias' development and activity. We spent a good portion of the appointment discussing the things he is doing. MRI showed no evidence of seizures (again). The white spot they have been monitoring looks the same. They suspect that it may just be scarring but they are continuing to watch that it may not be a tumor. Not growing in size and possibly even appearing smaller has them leaning more towards the scarring. She did tell us about a gland that was in the wrong position, and while it has nothing to do with seizures, she would like to watch as he gets bigger, how it functions. So there always has to be something new added to the mix. We also discussed his increased care needs with the potential risk of seizure increasing while asleep. We discussed the situation about the lack of overnight nursing coverage. She agreed to write letters of support for any advocacy we embark. Just to catch everyone up on the nursing, we are down to 1 night per week and every other weekend, however the nurse has shown up just half the time so she isn't reliable. We got the info we needed from Neurology and the strong advocating will commence.

All in all very good news today. Elias is home and recovering well from the grogginess of anesthesia. Our wonderful daytime nurse, who we and Elias love to death offered to work tonight for us since she was "off" today with Elias in surgery so that we can get some much needed sleep. We told her she didn't have to do that, but she insisted. We are thankful for that and will gladly take her up on the rare opportunity to sleep. Especially after the last two long days at the hospital. Thank you all for your support, thoughts and prayers. They help make a rocky road less bumpy. We are thankful for the positive news and progress today brought as we continue to watch Elias thrive and exceed doctors expectations.

 

First Full Schedule Week of 2012

 It has been a typically busy week. One or two appointments each day that will continue through the week. Elias has IVIG as well as O.R. time with dental for cleaning and oral cancer screening. This is important and needs to be done early for Fanconi Anemia patients. While under general anesthesia he will also have another MRI and a discussion with his Neurologist about the readings. While everything should be routine, for Elias anytime he goes under anesthesia it is always a little nerve racking for us as well as his doctors. There is always high risk respiratory wise for him. Thoughts and prayers on Friday will be appreciated.

 

 We are anxious to see what Elias' IGG levels will be, which the results will not be available until The beginning of next week. We are hoping for a continued rise in the level versus the up, down trend that he has been showing. We have noticed some increased energy in him overall, day to day so we hope that is an indicator of positive results.

 

 

 

The photos on today's post are from this afternoon while Elias was being fed. They turned out great! He was watching 'Cloudy with a Chance of Meatballs.' It has become one of his favorites. Thanks to his great-grandparents  Nana & Papa for buying this for him. Elias has continued to be really into the chasing game. The communication intent, engagement an initiation of action is HUGE for him. It is a big step forward in his understanding how to effectively communicate. It has been very exciting.

 

As always we thank everyone for taking the time to read about our amazing little man. He continues to amazes us everyday, and we are trying to share those triumphs with you all as much as possible. We are always thankful for the prayers and support shown to him and our family. We wish everyone a healthy happy prosperous new year.

 

 

 

The Chase is On

The past few days Elias has become very into the game of chase. He is communicating this desire by taking our hand and leading us, much like he does when he is taking us to something he wants to request. After a few feet he lets go then pushes our legs while laughing. It is quite adorable. As we take off running he let's us have a head start before chasing us. Sometimes he will change direction and try to cut us off the other way. It is a game that has blossomed out of the blue, but has been very active each time he is out and about for playtimes. You can see the pure joy on his face and hear his enthusiasm. It has been a lot of fun for us all. Here is a brief clip of Elias chasing around the house.

A Truly Blessed Gift

Thanks to an anynomous donation, Elias is now the proud owner of the iPad that was suggested for the next step in his total communication approach. We have started the process of getting him accustom to the 'controls' of using the device. We are also working on fine motor skills he needs to effectively use the communication application. He has caught on quickly, as you will witness in the video below. He also seems to be enjoying it, again evident by the laughter and enthusiasm displayed. We are very grateful to this person for providing such an important and exciting opportunity for Elias! Thank you from the bottom of our hearts.

Here is a sample video of Elias learning to 'swipe' and select on the iPad using a children's book. As you will see he has mastered the skill and is having a grand time. Enjoy this first of what we hope to be many video demonstrations of Elias using the device. 

Watching the first snow

We had our first snow of winter to day. Elias was watching out the window in amazement at the flakes falling. He was so intent on studying it all while taking it in. He stood at the window for a good 25 minutes. It is so great to see him enjoying the simple pleasures of the world.

The world will be his canvas

Happy New Year

Happy New Year to Everyone! We are working on an end of year recap that we hope to post tomorrow or Monday. One of our hopes for 2012 is to blog more about Elias! It has certainly become more challenging to find the time, but we are going to make a better effort to keep everyone updated. Two updates in December is just not what we like to see. We hope everyone has a safe and happy 2012.