But let's focus on all the good stuff first and the amazing progress Joshua has made in the last year because there is certainly plenty to be thankful for and super proud of! Since having his central line removed in March 2015 - in large part, I believe made possible by the clinical drug trial in Cincinnati - the major aspects of his Short Bowel Syndrome have radically improved. He has steadily increased his oral food intake, lessened his dependence on hypoallergenic formula, and continued to gain weight and maintain it in the 50th percentile which is almost unheard of in a young SBS patient. At GI check-ups which are now spaced out to 3 months instead of every 6 weeks, his team tells me to just keep doing whatever we are doing because it's working which is music to my ears! The nutritionist hasn't even come in the room to see us in over a year (largely because we have disagreed in the past about what is best for Joshua and apparently my way was the right way!). Joshua has continued to expand the types of food he will accept and is now down from 5 servings of high calorie formula a day to only two.
The three things we continue to deal with on a daily basis concerning his SBS diagnosis are frequent bowel movements, chronic abdominal pain, and food intolerances/allergies. We are making slow, but steady progress with all three for which I am extremely grateful. Joshua's bowel movements have decreased from 6-8 a day to only 2-3 a day which is an indication his intestines are absorbing more and this is the most important aspect of his progress with SBS. The chronic abdominal pain is a real downer and I absolutely hate that he goes through this every day, but there is not a whole lot that can be done about it unfortunately. We don't even know to what extent he has pain since he is nonverbal and can't describe it to us. I do know that his belly wakes him up frequently and I can hear and feel his belly churning as he whimpers, cries, and hugs me. It's terrible to watch him go through especially because I feel so helpless to do anything other than comfort him and tell him it will eventually go away. I was finally able to convince his doctor to start him on a centrally acting nerve pain medication at night - neurontin - about 7 weeks ago and that is helping quite a bit to allow him to sleep through the night. We go back to Egleston next week for a check up and will be discussing whether a different medication or a higher dosage is appropriate. The food intolerances are the one aspect that I am not sure he will ever fully move past, although he is able to tolerate small amounts of dairy at this point which is awesome because pizza is one of his favorite foods. Gluten and beef are the other foods we avoid. Gluten causes bloody diarrhea and beef - even just beef broth - causes profuse vomiting so those are both off the table for the foreseeable future. And that's okay, we can work around those limitations fairly easily since gluten-free foods have come a long way in recent times. Joshua's favorite foods are homemade pina colada popsicles, gluten-free pasta, coconut yogurt, gluten-free pizza, apples, and french fries with lots of ketchup.
One of Joshua's greatest accomplishments in the last year has been starting preschool and crushing it, I might add! I was SO nervous at the beginning of the school year, but Josh proved my fears were unfounded almost right away. By two weeks in, he was riding the bus and loving it. I cannot begin to describe what a relief it has been for me to send him to a place he enjoys going and I know he is getting the instruction, therapy, and social interaction he desperately needs. It has been life changing for the whole family and I cannot wait for school to start back in 10 short days! Much to my surprise, I have been thoroughly impressed with Clarke County's special needs preschool program and I feel very fortunate that we have this resource available to us. It seems to be the best program of its kind in all of the surrounding counties and I cannot help but marvel that it's not a coincidence that we are exactly where we need to be even though we contemplated moving many times over the years.
So now on to the developmental stuff that is trickier for me to talk about. Joshua has autism, of this I have no doubt. Where exactly he falls on the spectrum is hard to know. I certainly wouldn't label him as being severely autistic or low functioning, but beyond that it's difficult to describe and predict his future potential. These are entirely subjective labels anyway that mean different things to different people. While his medical issues are much more concrete, autism is anything but. The two main things that land him on the spectrum are his communication difficulties - he is completely nonverbal at this stage - and his sensory issues which are harder to pinpoint. Josh makes terrific eye contact, he is super affectionate (especially with me, I am the lucky recipient of many hugs and kisses every day), and his receptive language skills (what he is able to understand) are on par with his peers. His expressive language skills, however, are on about a one year old's level. Even though he is able to verbally form many vowel and consonant sounds, he is unable to put these sounds together to form words. His speech therapist describes his issues as "motor apraxia" which in layman's terms means part of his brain understands what is being asked of him, but the part of the brain that sends commands to his mouth (and other parts of the body) misfires so he isn't able to complete the requested task despite trying very hard to. I can't begin to imagine how insanely frustrating this is to an intelligent and wanting to please child. Picture going through your day having so much to say and express to others, but having a piece of duct tape across your mouth and your hands tied behind your back.
We have tried multiple different techniques to help Joshua communicate his needs and desires. Sign language has not been very effective, I believe because of the same reason he has difficulty speaking words. His motor apraxia prevents the right synapses from firing and communicating to his hands the different signs he needs to form. The end result is he learns one sign and when we try to move on to the next sign he will eventually learn that second sign, but no longer use the first one he originally learned. So now he uses one universal sign - clasping his hands together in front of his chest - to communicate anything he wants. We also tried a picture exchange system through a program supported by Georgia State University last summer. He picked up on the concept pretty quickly, but it was hard to move past the initial 3 choice scenario to anything more substantial. He lost interest and just started bending up the picture cards and eventually pulled the velcro board clear off the wall. Our latest attempt - a speech generating device (SGD) - is looking much more promising so far. The SGD is a small tablet set up with special software made up of icons that have a picture and word. When Josh touches the icon, the word is spoken and the software navigates to a new page where another list of icons is displayed. Since he absolutely loves electronic devices and is a whiz on an iPad, the SGD fits his preferences very well. His new augmentative communication therapist was amazed at how quickly he picked up on the concept and very quickly started stringing 2-4 words together. I was not at all surprised, I knew he would catch onto it in no time. His favorite phrases to tell me on his "talker" are: Eat Popsicle, Eat Pizza, and Play iPad. We are extremely optimistic this new method will provide Joshua the ability to communicate all sorts of information both at home and at school.
With alleviating Josh's frustration of not being able to communicate, we are very hopeful this will help lessen the number and severity of his meltdowns. Although they really aren't very frequent compared to many kids with autism, the meltdowns he does have are traumatic for everyone involved. We are still learning the warning signs and triggers that precede a meltdown. Often times it involves sensory overload in a crowded place, but he has also had them at home sometimes without any signs that we can tell. We also deal with some aggressive behavior in the form of biting, hair pulling, and pinching, but this is not all that common comparatively speaking. Josh's occupational therapist has helped us identify a simple move that gives him the sensory stimulation he requires to avoid most of the aggressive behavior - we simply interlace our fingers with his using both hands and squeeze. It's amazing how effective this simple move is and Josh now offers up his hands to most of the people he encounters for a quick squeeze. It's his version of a friendly handshake, often given with a big smile.
Joshua's interests have continued to evolve and are now fairly limited to a short list. He hardly plays with toys and does not watch any cartoons. His loves include spinning, swinging, chewing on just about anything, swimming, flipping through certain books and magazines, and watching commercials with logos on YouTube. His favorite TV shows are Wheel of Fortune, Jeopardy, and the Braves. Mainly because they have "sponsored by" segments that display 3-4 logos in a row which really get him excited and squealing. Josh also likes watching replays of the Dawgs on the SEC network so he's learning early to share our love of college football - smart boy!
The most frequent question I get lately is whether Joshua is excited about being a big brother and if he understands that a new baby is on the way. Honestly I have no idea, but I don't think he really gets it. He knows my body has changed and I say "baby" every time he pats my belly, but it is such an abstract concept to try to explain to him and kids with autism are typically very literal in their interpretations of things. He hangs out in the baby's room some and checks out the crib and we look at pictures of babies in magazines. I don't think it will become a reality until he actually meets his sister. I would be lying if I said I'm not nervous about that introduction. Joshua is a mama's boy and I fully expect there to be jealousy and frustration when I am not able to pay as much attention to him as before. I'm sure it will work itself out eventually, but it could be a rocky start to siblinghood.
My precious miracle baby is turning 4, I can hardly believe it! He continues to amaze and inspire me every day. I know the future holds great things for him and I feel so privileged to be on this incredible journey with such a beautiful soul, my sweet Joshua.
