Ella and Wayne kite flying on Easter
A candid shot of my loves and I .... they are getting so big!
William waving Hello
Our very tolerant dog Porter :-) Ella enjoys trying to dress him in pink!
I am writing from Lake placid near a cozy fire next to a sound asleep and snoring William. My mom and I decided to get away for the week that the twins had off of school. Even though its very cold in the Adirondack mountains it feels wonderful to be away from the stresses of home and everyday life. Last week William and I met with Dr. Mink (his neurologist) to discuss the past few challenging months. Will has been so much more alert and happy yet still struggles more than usual with his eating skills and body temperature regulation. He is still dipping down to 92 and rarely reaching above 95 degrees F. During our appointment we discussed shunt placement (to relieve fluid pressure in this brain ventricles), g-tube placement, among other concerns. Dr. Mink does not feel that William would benefit from a shunt at this time since he does not know how quickly the fluid in his brain has been collecting. Placing a shunt would also be extremely risky for Will given how much fluid fills his ventricles and how little grey matter is present. The risk of a life threatening hemorrhage during the operation would be high. We are going to monitor pressure more closely now and re-check all his hormone levels on a regular basis to make sure his hypothalamus is not losing function. He also does not feel that a shunt would help Will maintain body temperature. Although there is concern that with consistently low temps William is going to have a much harder time fighting off cold/infections in the future. I asked Dr. M what I should do and was not given much of a informative direction or advice. Of course I am afraid... especially after seeing William struggle with this last illness. Meanwhile I am keeping him cozy and using a log to chart his temp 3 to 4 times daily.... just to be sure that he is warming up at some points during the day. For this Adirondack trip I packed his heating pad, thermal sleeping bag, smart wool socks and other super cozy gear.
Next week we finally have an appointment with GI to discuss a tube placement into his stomach for some of his feeds (not all). I know many children online that have thrived with g-tubes.... yet I am really struggling with this decision. It seems so unnatural for my son to be fed through a hole in his stomach yet he is still struggling to get enough liquids by mouth. Equally concerning are the results from the swallow study showing that he is aspirating often. Aspirating is not only uncomfortable but increases risk of recurrent respiratory infections and lung damage over time. I am just hoping to be strong for this appointment and to know what the best decision for my son is. The tube placement will require a surgery and a few nights hospital stay... but may be the best choice for a healthy future. Especially during the winters when he is already struggling with respiratory infections.
That being said I am now willing my mind to be at rest this week and take a break from the decision making process! Both Ella and William are having a wonderful time in the Adirondacks so far. It always amazes me how simple trips can be magical adventures for young kids. I am grateful that William can enjoy this time with his sister....so many memories in the making :-)
P.S ... I am not sure how I failed to mention this but we seem to have gained amazing seizure control since starting Clobazam (generic is Onfi). This medication has been used for years in Europe and Canada with success but just recently approved by the FDA in the U.S. Since starting this medication in late January we went from having multiple seizures a day to only 4 (!) in the past three months. During this time we have been able to wean him off one of his other seizure meds that caused drowsiness.