So it really has been a long time since our last update. Landen is doing well he has gained over 7lbs now and getting bigger and stronger all the time. We have been feeling the spring and are spending some time outside getting the yard and garden ready. Spring is around the corner and we LOVE IT! Both the boys love to be outside. Dad is came home the day before Thanksgiving and is doing great! He is back to work full time and made such an amazing
recovery. Other then that our only news is Landen will be going into surgery tomorrow to have granulation tissue removed for his g-tube, a tube taken out of his right ear and his tonsils out. The granulation tissue is extra scar tissue that has formed around his G-tube. Its irritating to Landen and it tends to bleed a lot. we had this removed back in October and had it all under control but when he pulled his tube out in January and we had to have the hole stretched and a new tube placed (something you who just follow the blog may have missed because I've not been keeping up) it irritated the tissue and the granulation tissue started to grow again.
We were already scheduled
to have the granulation tissue removed from his G-tube and since I hate to have Landen sedated for just one thing I contacted his ENT. His ENT has wanted to do and
exam and remove a tube under sedation for awhile now but I asked him to wait until we were going in for something else. We went to our pre-op with the
ENT when he told us that he is really concerned that its time we finally
take his tonsils out. We would have done it a year ago but we were
concerned with how we would keep him hydrated and fed
for the week recovery. We didn't want to spend a week in the hospital if he decided it was too painful to eat or drink. Before with Landen even if it was a minor illness the first thing he would do is stop eating. Since he has the G-tube now the ENT really
thinks they should come out his tonsils are almost touching they are so
big. We have everything ready to go and we expect to be in the hospital for at
least 24 hours probably more. Sometimes Landen does quick recovery sometimes he just
needs more time. We will be at Logan Regional for surgery. I've opted not to go to Primary Children's because I love our ENT and this will be Landen's third surgey there and 3rd hospital stay we know they do a good job. We have a wonderful ENT who always tells us he looks at
Landen as a unique case and follows his lead rather then expecting him
to act and recover like any of his other patients. Prayers and thoughts
are appreciated a little worried about controlling Landen's pain levels I have been told this could be a painful recovery even though its a minor
surgery. I don't know I never had mine removed.
Shortly after his second birthday our Little Landen was diagnosed with a Proxisomal Biogenesis Disorder (or PBD) a rare yet fatal genetic disorder. It hasn't been easy for us to share and this site has been created to help us keep everyone updated with doctors news, information and what is going on in our journey. We know we have tons of family and friends support and love. We hope and pray that we are blessed with many more years to watch our sweet baby grow!
My Little Landen
This blog has been created to help others keep up to date and follow our journey. I will post as often as I feel there is new news in his condition or our family be it good or bad.
Monday, March 10, 2014
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