Friday, June 27, 2014

In the recovery phase

So, last month was a doozy! As June comes to an end we are thankful to say so far so good! After four surgeries and multiple admissions in May we are happy to say June has been way less eventful. We have however had many follow-ups and changes with Blake since all these shunt malfunctions. Blake had an MRI done which when compared to the MRI we had back November look almost similar with only slight differences noticed in ventricle size. (After all Blake's been through we expected their to be more than just a slight enlargement) our neurosurgeon seems very happy with the progress he has made.

Blake also had his eyes examined- The appointment actually went great because Blake fell asleep during the dilation of his pupils part and decided he was going to sleep through the WHOLE thing! They wanted to get his eyes examined shortly after his hospitalization because of his past laser surgery on both eyes and the pressure that can be put on the vessels during a shunt malfunction. The Optamologist dilated his eyes and then checked his vessels, prescription, and his retinas to make sure no damage was done....and Blake passed with flying colors. His eye doctor says he has a slight astigmatism but nothing that requires glasses.

Blake was also seen for multiple ultrasounds regarding the large pocket of CSF fluid in his belly. The size has decreased from 13x9cm to 7x5 which is a good thing. However, that does mean because his stomach is not absorbing the fluid quickly Blake's shunt will probably never be able to be placed back into his abdominal cavity. Because of this he will just unfortunately, have to have several lengthening surgeries done to his shunt until he stops growing. Which is slightly upsetting- no momma or daddy wants to sit through more surgeries than they have to!

As far as developmentally a few changes have happened. We were told Blake would most likely regress quite a bit and have to relearn how to do the activities he was doing prior to all the surgeries. Our son had different plans though. He has been doing wonderful! Our developmental pediatrician has now upped his Valium to help with his muscle tone in his left side but is very impressed with his progress. They are a little concerned with his weight loss and would like us to "fatten" all his foods and drinks up to help him have a steady weight gain over the next few months. (Prior to the first surgery when we got to Riley Blake weighed 24 pounds by the time we left June 2nd he was down to 19lbs 7oz---this week we weighed 21 lbs even) it's a start!

Blake is soaring trough therapy these days- he is walking (yes you read right) walking well with his gait trainer- he is now pulling up to stand on all our furniture and in his crib! We have never been so proud and excited for this new chapter in his toddlerhood! (Is that a word? Toddlerhood? Eh- if it's not you get my point!) I look forward to the day Blake can get around and run with all his other friends- it's something I dream often of!

All in all Blake is just as always a miracle! He is such a trooper and makes Zach and I so proud on a daily basis! Where he gets his strength and perseverance I have no clue but he is amazing as always!!

Oh and of course I forgot to mention in earlier post- cousin IT has retired and Blake is now a stylin' little boy rocking his new hair due!

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