Hello..It's been awhile since we've posted...I think it's just cause we have a sort of boring life...I think about updating and realize I have nothing interesting to write about..Things here have been good..Becky is set for surgery on the 19th of August..she has had ear infections one after another since December...so off for tubes we will go.. I hope we are making the right choice. Her hearing is not what it should be and her speech is not progressing...It's all scary to me....After casey you would think that nothing would scare us...but it does.. we pray as parents we are making the right choice..part of me says if we leave it alone, she'll outgrow it. The doctors say "NO". Anyway she is walking all around the house. It's so cute and in another month she'll be one year old. Where does the time go? she is truly our angel with such an important purpose in our lives that she can't even begin to imagine. she is our distraction from EB. She and casey have the greatest relationship. A few weeks ago she did hit Casey in the eye with a toy when she sat up suddenly as he was kissing her goodnight. That lead to our first corneal abrasion. Casey will tell you " beckaboo took my eye out!" Luckily with some antibiotic and lubricating drops it was healed in two days leaving it alone. We were very lucky with that one that it healed so fast. That was painful for him...In June we got to go to EB clinic in cincinnati. We hadn't been there since he was one so it was nice to catch up with everyone there. All went good...His echocardiogram and EKG was normal. Normal Dexascan (bone density).. His vitamin D on blood work came back on the low end so we are supplementing with some extra vitamin D to prevent the borderline osteopenia he has. With exercise, good nutrition and some extra vitamin D it will stop the progression...We have increased his g-tube feeds from 4 ounces to 8 ounces a feed by going up 10 mls a day. It worked like a charm...turns out we shrunk his stomach giving him such small feed while he was sick most of the winter.. we also had alot of vomiting and poor weight gain with the pediasure so we switched him to a blended food diet. the vomiting has stopped, his energy level has tripled and his wounds are healing so much faster. This is the single best thing we have ever done for him. He's gained four pounds...Yes, it's a HUGE pain to mix and figure out the nutritional requirements but it is soooo worth it. His bronchoscope of his lower airway in the office was clear...the upper airway will be done in the OR in the fall...He has some heat rashy patches on his back and neck for which we are using a new cream...we thought it was a fungal infection but cultures came back negative....other than that, his PT and OT evals were good..he has no issues with his hands or hand function...we added a new pain med to his regimen for that extreme pain he gets with some injuries. We got to meet lots of EB families while we were there and it was such good therapy to talk with moms who could understand what I go through..The kids we met were incredible...I admire every one of them...they are all my heros.
Please send some extra prayers to Daylon and Bella going through transplants right now in hopes of a cure.. they are both going through rough times and could use some extra prayer.
Casey will go back to preschool in september five half days ...and his nurse will travel with him to and from and remain with him in class. He loves school and can't wait for september. We went to meet his new teacher yesterday and I think he's going to have a great year. what a great and supportive school.....John is still working at the hospital but looking to get out ...he wants a slower paced job closer to home...I still work one day a week at the doctor's office ..It's boring work but I get out of the house and the extra money is soooooo needed...My older son continues to play the trombone..It's his happiness in life. Nine has proven to be a rough age.. I find him trying to express his independance lately and fit in with his peers a bit more....He is still such a good boy who got awards in band and a perfect report card..he makes me so proud.
Well that's it for now...I am going to try to post some pictures..I don't know how yet...but I'm trying to figure it out....