August: An Overdue Update

I sit down at the desk in our room to type an update so often. Children occupied- most often sleeping- fingers tapping, and I can just never get the words out. It is still so incredibly difficult to put words to this journey. To explain how our life feels so normal and yet so abnormal all at the same time. Brock is honestly doing so well- undoubtedly better than we were told to expect. I still wonder what is/was realistic in doctors’ minds for his growth and development. But, I can read the statistics. 20% of babies with meningitis don’t make it, 50% of those that do survive go on to suffer significantly with vision, hearing, and have learning disabilities, 40% require a shunt. He is  so very happy and so easy going. We still see physical therapy, occupational therapy, and speech therapy often. We had let go of speech, and thoroughly enjoyed eating without someone watching every motion of his body, mouth, and tongue, but Brock has shown a need to pick back up therapists in that department. Brock has also been the lucky recipient of the stomach bug- twice…so that gives you an idea of what his immune system is still like. He also seems to have at least 1 cold a month, and we ended up in the ER with high fever and a double ear infection the only time we got enough guts to take a trip. He seems to catch everything and honestly, living in a bubble is not enticing to me, but blowing up at people who put their fingers in his mouth like a chew toy is. At his 6 month appointment, our pediatrician suggested seeing several additional specialists, but said nothing was pressing or would really alter his treatment, so I choose to steer clear of receiving any more potentially bad news. Fast forward almost three months, we are in the same position- so in the next three weeks we will be having another swallow study done, and will be going to a pediatric ophthalmologist and back to the audiologist. We will also see someone to make some foot splints (I don’t know what else to call them) that will make him stop curling his toes so that he will learn to stand up and balance. On top of all that, we go back to neurology, and then have another MRI sequence before seeing neurosurgery on September 12th. At his last head circumference check, Brock had jumped up onto another growth curve, so obviously we are more and more aware that the VP Shunt is quite possibly in Brock’s future. It’s funny (ok, not really) to hear them talk about a shunt like it’s the most minor procedure- it’s brain surgery, it’s another hospital stay, it’s anesthesia, and the word death is on the consent form. Obviously that risk is low- but so was him getting GBS meningitis at 11 days old.

We still spend a lot of our daily time trying to get normal things accomplished- the fact we did nothing but what absolutely had to get done for at least 6 months definitely doesn't help. We are in the process of trying desperately to simplify, spending less of our daily time on our things and more time with each other. Brad got back from the very last summer youth trip yesterday, so we are eager to spend time together as a family and conquer a much needed to do list.

Medication weaning has gone incredibly smoothly, and Brock will be completely off of phenobarbital August 27th.  He will have an EEG after being off for at least two weeks, and then I am hopeful we can try to wean the next (and last) medication. His neurology appointment is August 28th, so they will be the final say in that decision. Last week, Brock was able to start music therapy, and it was so incredible to see how much he is motivated by music. For instance, we work a lot on him holding toys for lengths of time, and banging things together. Most times, he is completely uninterested. At music therapy, however, he was perfectly content to sit up, and shake a maraca for well over his 20 second goal. It was fascinating to hear how music therapy can benefit him as he grows with coordination, speech, and many other things. Please be in prayer that insurance catches up to this- because it is not currently covered. We are in a 6 month trial with free services right now…so that’ll be a hurdle for next year.

Upcoming dates-

Friday, Brad and I celebrate our 6th wedding anniversary and would love to get away…but anything more than a couple of hours isn’t really a possibility. Our big goal is dinner and a movie- which will most likely look like dinner, back home, and then movie. That’s ok though.

Friday morning, Brock has his 9 month appointment, followed by a swallow study. As I mentioned, Brock has continued to show a lot of struggles in the area of eating. Breastfeeding is less of an issue now- but the introduction of solids has been way more stressful than exciting. Everything has to be completely pureed or it causes Brock to gag, until he vomits. Every. Single. Time. I cannot mash a banana with a fork and feed it to him. I cannot give him anything that isn’t more liquid than solid- like mashed potatoes. He gags, until he vomits. He cannot have puffs, or rice cakes, or yogurt melts, or teething biscuits…you get the point. Food has always been fun with Brynlee and Brielle, and it is so pull my hair out stressful to see Brock struggle so hard. To try again and again and make zero progress. Nothing makes it easy to watch your child struggle and suffer. That part of this journey does not get any easier. We also have a feeding evaluation with a team after his swallow study to try to piece together if this is related to the brain damage, or something more simple like a severe gag reflux. Our doctors seem to already be suggesting the former. They have talked to us about feeding therapy camps offered by My Children’s House in Dallas, so we are anxious to see what will be our next steps in trying to overcome some of these issues. Brock has also been referred to a pediatric ophthalmologist (eye doctor). He lacks “normal eye movement”, which could mean a million different things- but since about ½ of meningitis patients suffer from vision issues, it is certainly a concern from our point. That appointment is September 3rd. His MRI scan is scheduled for September 12th , and his visit with neurosurgery will closely follow that date. It is our hope that we will be able to obtain the images without requiring sedation, but the older Brock gets, the less likely that is. The MRI room is cold, and loud, and Brock is very sensitive to noise levels. While that is a great reminder that he is hearing things- it does not tell us what he hears. We get one attempt to try without sedation- one hour to get him asleep, bundled, and inside the machine. One hour to get about 7 minutes of Brock being absolutely still. Otherwise, we hold food and drink for 6 hours, come back, and have a small stay in recovery afterwards. I have met so many people who do this regularly- and I am amazed at how calm they are about it…I’m not there yet. I know none of these things define Brock or are terrible things, but they are stressful- and a shunt is for life. It would mean he would have to ask and read very carefully the insurance policies to every employer he ever has- that health coverage could very easily become a deal breaker. That he would need to go back every year to see a specialist. A yearly reminder of the worse experience of my life to date. I don’t want that. Add possible (50% probable) revisions…it’s something I am requesting prayers for…and while we are on the subject of prayer requests...

Please pray for the family of Rorie Joslin, who just lost their daughter to cancer just a few days after her 5th birthday. Her funeral is tomorrow.

Pray for Gabe Pratt (who was in our youth group in Baytown) who just got news that his cancer has returned. He will have multiple hospital stays in the upcoming months to endure extensive chemotherapy.

Pray for Jaydan Thompson, whose dad was a minister at Grapevine before Brad and I were ever here, who is currently battling cancer as well.

Continue to pray for Jonathan, (see blog post below if you don’t know who he is) who was sent home on hospice but is still doing well, and just celebrated another birthday!

Thank you all so very much for continuing to pray for Brock and check on his progress!

Much Love,

The Morrow Family