Summery of all Jack’s appointments; I am feeling much more joy as we checked off crucial appointments and received such positive news. 

Let’s see, his yearly follow up with his neurosurgeon was first. She is just blown away and so encouraged by all his progress. She has said multiple times that his surgery was the most challenging on so many levels and he truly stole a piece of her heart. We had a great conversation with her and got to ask a lot more questions about the actual surgery. It is amazing how fresh each step was for her to recall, I was just amazed with precision and detail as she answered our questions. As I said in the last post we had this appointment at a completely different facility as the actual surgery. the feelings and emotions I felt leaving were simply indescribable. We also left without a huge piece of critical information unknown. We were unable to coordinate Jack to have a MRI before this appointment. Yearly MRIs over the next 5-10 years are going to be mandatory as he could develop hydrocephalus (or fluid build up) in his left hemisphere. 

The next few days following that appointment were filled with me trying to coordinate three different orders by three different facilities! Jack needed his MRI which would be under sedation, Botox injections in his leg and wrist and labs drawn for sleep medicine, absolute bonus if all done under sedation at the same time. Jack is regaining more and more feeling on his right side which so so good but makes his Botox injections excruciating. So thankfully we were able to get all of these things done in one appointment, in town! As I said above our weeks have been patterned with sickness and no sooner that I got this huge appointment on the calendar, Jack had high fevers and then developed croup. I was so anxious that we were going to have to reschedule/coordinate everything but he thankful he cleared up and was off antibiotics in the knick of time! 

Results trickled in from all that was done that day. His physician who did the Botox was very encouraged on how his body has responded over time and feels that we may not need to do it anymore! Jack was given Botox to relax his muscles by putting a “block” in specific places to help his muscles to not contract giving him a chance to correct his walking pattern. This past Thursday I got the chance to talk with his neurosurgeon about his MRI results and she was pleased to deliver that there are no signs of hydrocephalus! The fluid is filling the left cavity nicely and so far, evenly. Thanks to my chart I was able to see the results before the appointment deciphered them as best I could. I was caught off guard by an interesting pocket of fluid going over the midline of the cavity but she explained that yes, that is indeed there but giving the history and anatomy of his left hemisphere (what she removed) it was so enlarged that it was naturally spilling into the right hemisphere. So, to anyone reading the MRI without complete knowledge of Jack’s history this would be abnormal and slightly alarming after this procedure. But thankfully again, this was “normal” for him! 

What’s next?! 

This summer Jack will be attending a 1/2 day program 3 days a week that will provide speech therapy and occupational therapy. He will return to MFB for our patient physical therapy as well. In the fall Jack will be attending a full time mainstream young 5s program! He will still be provided OT and PT during his school day and will have 1:1 assistants throughout the day. In May, we also had Jack IEP and I am very encouraged about his physical and social emotional development but it is clear that academics are going to be a challenge for him. I am blown away by all the resources that are readily available to him but it doesn’t take away the strain on my mama heart. Prayers are appreciated over the summer as we prep Jack for school in the fall. It is going to be a lot of very hard work for him to stay focused and on task to keep up with his peers. We know God has great plans for Jack but it still hard to bring  light to the shadows of guiding someone with special needs in the demands and expectations of society. 

Matt & Mer