Joshua ~ Update ~ Sept. '99~ 6 months post~op
Joshua continues to do exceptionally well. He has
had a few of the
night sweats lately but nothing to be concerned with. I am watching very
carefully. He still remains pain free, except for one morning he woke up
crying because his neck hurt. It could be that his aunt bought him a new
body pillow (naturally it is purple...and plaid) but it is also very soft and
he usually sleeps on a firm pillow. I gave him half a valium and massaged
the muscles until he was comfortable. The next night I took the soft
pillow
out of his bed and he used the regular firm ones and did not wake up with the
muscle spasms and pain... the valium for the muscle spasms was dc'd at
approximately 6~7 weeks post~op and he has had no more until the pillow
problem and it was only that one dose.
His oxygen stats have continued to stay high, he does
not apnea nor
destat at night anymore...Hs lungs are still very clear and we have gone from
breathing treatments every four hours to not one in the last three months.
He also goes without oxygen for short periods of time, like to take his bath
or goo in another room to see something. Before putting him back on the
oxygen I always check his o2 level and it is usually in the mid 90's w/o any
oxygen assistance. About 5 months post-op he did get the flu and ran high
fevers, but a round of oral bactrim did the trick (when it used to take IV
antibiotics to get rid of any infection). It seems his immune system is
finally working well. He had routine IV antibiotics post-op until we left
the hospital and now this round for the flu. No other illness requiring
medications. He had a phenobarbitol level drawn. Therapeutic level
is
between 15~18. Joshua's level was at 13, enough below normal that the Drs.
are considering dcing the phenobarbitol. Apparently he is staying seizure
free on his own... Thank God!!!! I would just like to run it by Dr. Walsh
(The Neurosurgeon) before we go ahead and do it.
School has started for the new year and Joshua is
excelling
unbelievably. He is like a sponge soaking up all the knowledge. His
fine
motor skills, attention span, cognitive abilities, endurance, and frustration
levels are all still improving daily. His visual tracking is improving
also.
He is still homebound because of the fragile conditions of his lungs and I do
not want to expose him to anything that could be potentially harmful.
His use of his Dynamyte (talking device) is getting
very good. Although
he still prefers to just mouth the words. I can read lips but not everyone
can, so we are pushing the use of American Sigh Language and the Dynamyte.
He is also getting a rolling stander. This resembles a wheelchair with no
seat. He will be standing in it, like braces but they are attached to
wheels
so that he will be able to roll around, like a wheelchair. This will give
him more mobility and also put some weight bearing on his legs which he needs
to do. It has been two and a half years since he has stood up at all.
Appointments are being set up to go back to the
pulmonologist to finish
weaning Joshua completely off the oxygen. It may take a little more time
but
we have plenty of that. Also want to set up another MRI to make sure the
syrinx has collapsed.
It has been a wonderful six months for Joshua. He
has been his
healthiest is 7 years. And he loves it. I thank God for
answering our
prayers and giving Joshua some quality of life (not being sick at all) to
enjoy, with what he has left to enjoy it with. He is so happy and always
smiling. You know....Life is good, God is Great.
Keep on PRAYING HARD ~ Life is Short!!!