Thursday, May 6, 2010
Abe is 15 months, corrected age 12 months. Wow we really did not know if Abe would make it this far. New pictures will be updated when Glenn returns home next week. I will start head to toe like I tried to do as FNP student. Neurosurgery: VP shunt is fine no current need for new one to be surgically placed right now. He has a haste MRI scheduled for October or November then he will see neurosurgery NP to adjust the VP shunt. His hair is growing well and soon the shunt will not be as noticeable. Eyes: eye doctor at Children’s left a voice mail, they assessed that he sees 20/710 and has cortical vision loss (CVL). This is a result of damage the optic nerve and the brain’s ability to process what he sees; therefore glasses will not help the problem. I personally need to read up on it myself because I don’t remember learning about it in nursing school. He also has stage 2 ROP. He has an eye specialist from the school district coming 2x month to work on vision exercises. I have found it to be beneficial. This teacher, Pam, brought info on on-line free courses that Glenn and I can take to help with visional impairment. I will see if his respite providers can also take the classes free of charge. Also we can order books from the library for the blind. The home therapists never gave us any information about the library or the classes so I am so glad I said “YES” I want my kid to have a vision teacher and was not pressured to decline additional services. He has an eye appt. at Children’s at the end of this month. Ears: he passed the behavioral hearing test however struggled with low tones and favored looking to the right over the left. We are not sure if he has hearing loss for low tones since most babies don’t find low tones as interesting as high pitched tones. We also wonder if he liked the toy on the right over the one on the left. Nose: just growing bigger. Mouth: more teeth, more teeth and all that goes with that. I am concerned about one because it has a yellow appearance. I think he has 6-7 teeth. When Glenn left he had only 2. He passed the swallow study but was mad as mad can be during it. He caught on that barium is not a great thing to drink. Despite having an uncoordinated suck at times due to his fussiness he managed to protect his airway. They did see a delayed swallow but he was so mad during the whole exam. Chest: his lungs are good but he is still at high risk for infection due to developmental delay and lower muscle tone. Option care picked up the big oxygen tank out of own home. He has only required oxygen a few times while sick. We use the oxygen monitor occasionally at night only. He is so much more portable. He still has desaturations of oxygen during the night to 84 % which could be attributed to obstructive sleep apnea. Sleep study scheduled in November. Pulmonary feels this is why he wakes up frequently during the night. GI/Abdomen: He still suffers from GERD and we have found the compounded reflux medication we get at Children’s to work better than sol u tabs. He has an appointment with GI at Children’s to discuss the reflex per Pulmonary’s recommendation. GU: he will be having surgery to bring his testicles into his scrotum June 21st. They are not undescended testicles they are just too high canal. This will be an outpatient surgery unless complications arise or they decide to admit him. Motor: he has hyper muscle tone however I have also heard some professionals say low tone. He keeps his right hand very tight and fisted. He does keep it open occasionally and has a splint to assist with this. He is working with home OT and outpatient PT. He can sit briefly unassisted but he tends to be in the tripod position and is distracted by a toy. He has strong abdominal muscles and was able to bring himself to a sitting position while he was sideways on the boppy pillow on my lap. Development: eating more solids, he is working on different textures including apple puffs and baby teething cookies, but prefers apple sauce consistency. He drops his toys behind his back while looking at me while he laughs. He knows I hate his toys on the floor because I have to wash them. He has finally mastered breastfeeding so momma is not tied to a pump. Wow I have more time now. Amazing I could have switched to formula months ago but choose not to. Still have milk in the deep freezer too. I will probably become a lactation consultant in the future. He was 19 lbs, 2 feet 5 inches last week. Social: Glenn returns home next week briefly before deployment and new hardwood flooring will be installed. I am entering him into the Little Heroes Project. Just need to find a way to sum up his story to enter it. I participate in the Military Special Families Support Group monthly. Last month they had the Navy Secretary and a congressman come to hear family stories about the impact respite care has provided. Due to a time crunch I did not verbally participate but our story was included in a book with family photograph. Last I heard the book was delivered to President Obama. Not sure if he will actually read it but the goal is to get respite care for all military families with special needs children. Currently it is only available only in a few locations. Well Abe is waking up from a nap so guess it is time to go.
Posted by Karen Goddard