It does appear that he had Guillain-Barre Syndrom with the Miller Fisher variant....a very very rare and serious auto-immune disease that quickly paralyzes the body....so quickly in Robertson's case that in days you can take a normal child and then find them virtually unable to move. If it is allowed to continue, many will be on life support for some time due the disease progressing to their chest and lungs.
The progression for Robertson was...eyes (double vision/crossing due to paralyzed muscles), voice-high pitched and nasal sound, coordination (Robertson said he felt "tumbly"), then on to weakness of the legs, loss of reflexes, and eventually loss of core muscles....you see where this was heading? This is why I am soooo grateful for a rapid diagnosis and start on the medicine.
Here is my sweet baby...standing completely on his own!!!! This is something I had better not take for granted ever again!
He worked with the physical therapist today on re-learning how to climb stairs.
He also learned how to be safe when getting up and down....you can tell he was having fun!
Then it was time to rest for a bit.......
We later walked to the play room for their painting activity...
He painted an adorable apple tree......
But, he began to get silly and really wanted to paint a mustache on me! Since that didn't fly, he painted a picture of me....*WITH* a mustache, of course!
Then we headed back to his room for lunch...he isn't making a face because he doesn't like the food....
He still has to close one eye to be able to see. Although, he is growing weary of the "soft and moist" diet which means he gets ground up chicken and pureed vegetable soup. But, at his worst, he has had some swallowing issues, so it is important that he fully recovers before eating the harder foods like pizza or apples.
We have two more days of IVIG therapy in the hospital and then we are very hopeful to be heading home. We know that there is still some road left ahead of us but we truly are thankful for his amazing recovery!
Do I love and appreciate this baby and the time that we have together....
You bet I do!!!!! I am so thankful to God for him!!!
Here he is in absolute victory....a child who would likely have needed life support if we hadn't gotten a diagnosis that quickly.....is now standing strong:
THANK YOU TO ALL OF YOU WHO PRAYED....AND THANK YOU TO OUR LOVING HEAVENLY FATHER FOR ANSWERING THOSE PRAYERS!!!
So glad things are better and we have such miracles in our lives!! Prayers and modern medicine work really well together. We missed you guys in Primary today--thought of you a BUNCH!!! Amy
ReplyDeleteWow. Just wow! I've been following your drama for the last little while. answered prayers are such a wonderful blessing. Prayers of strength going out to Mama now. Hopefully you can get some much needed rest very soon.
ReplyDeleteAmazing! Thanks so much for sharing! In joyful gratitude, Eva
ReplyDeleteAmazing,i am so much happy for Him..Congratulations..
ReplyDeleteStay Blessed..