Good evening, friends! Hopping on to share a few quick updates on the heels of Jonah’s 9-month birthday.
Praise God and many thanks for your prayers! Jonah’s latest lab work showed a decrease in his liver enzymes, which meant there was no need for a biopsy over the weekend. Jonah was able to enjoy turning 9-months old from the comfort of home.
As mentioned last week, Jonah does need an IVIG infusion to increase his body’s IgG level so that he may better fight infections. Thankfully, the University of Maryland Children’s Hospital in Baltimore had a bed available Monday evening for Jonah to receive treatment and discharge mid-day Tuesday before Pasta with a Purpose. While inpatient (and visiting his favorite, long-lost nurse friends), he will have another blood draw to check on his Tacro level and Hepatic Function (liver numbers). So far so good, right?
Alas, our little firecracker is throwing us for a new ride. This morning, Jonah had his 9-month check-up at his pediatrician’s office. Another long-lost visit with a familiar face. Jonah’s head circumference is of concern – it hasn’t grown in three months. Now, Mom and Dad had noticed his circumference stats were in the lowest percentile; however, other doctors had not flagged it as a concern and we think he looks proportional.
Depending on availability, Jonah may have a few scans to take a look at his head while inpatient at UMD. If they cannot accommodate on such short notice, we will be working with our pediatrician on the next steps to have Jonah checked out as an outpatient ASAP. We are trying not to worry or think of worst-case scenarios, but it is a bit disheartening to know that our baby already has another mountain ahead.
Nonetheless, we are thanking God for the progress Jonah has made so far and rejoicing in answered prayer – that his new liver was protected through the weekend.
We hope to see many of you at Pasta with a Purpose to celebrate his 2-month liverversary, Liver Awareness Month, and the joy of community. As always, we’ll have more to come!
“Shout for joy to the Lord, all the earth. Worship the Lord with gladness; come before him with joyful songs. Know that the Lord is God. It is he who made us, and we are his; we are his people, the sheep of his pasture. Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generations.” Psalm 100
