9/17/17: Whew! What a wonderful summer we had! Lots of updates so I will be ‘brief’ with this post as I plan to resume a regular posting schedule!
Mae was accepted to the Undiagnosed Disease Network program at UCLA in California. We will be meeting with Dr. Martin Martin, the world renowned congenital diarrhea specialist sometime this fall/winter. Currently, we are in the process of waiting for our (Ryan, myself, and Mae) full DNA to be sequenced (we submitted bloodwork in June). We are in contact with our study coordinator at UCLA and will know more about our visit to California once DNA sequencing is complete and they have planned our clinical visit, probably not until later in October. This is amazing news and definitely deserves prayers of thanksgiving. We are fortunate to have this resource and are thankful for the CHIRP team at U of M for putting us in contact with UCLA. All of Mae’s medical team is searching for answers/links/explanations! Please continue to pray for them as we try all venues to help her/further research for her condition(s).
Regarding her TPN: Mae is on an 8 hour cycle of TPN that makes up nearly 10% of her daily caloric intake! Again, GREAT news! She has an expanded (but still very limited) diet that includes: meats, sweet potatoes, green beans, bananas, carrots, mangos, blueberries, squash, oatmeal, and a few other items. We are beyond happy that she has options for food and that she is doing well with her specialized formula and diet. She is growing and we are getting close (2-4 months, hopefully) to coming off of the TPN. She needs to continue to grow and maintain her weight in order for this to become a reality.
Mae has remained healthy with the exception of a hospital admission at U of M over Labor Day weekend. She spiked a 103.0 degree fever which is MAJOR cause for concern because of her central line/port. Bacteria cultures came back negative and it was determined that she simply had a virus. (Any fever over 99.5 requires a hospital admission for 48 hours to determine if there is an infection in Mae’s blood/central line.) Thank goodness she did not have an infection! She is feeling better now and we’re trying to put back on the weight that she lost while we were admitted- The antibiotics that were given were really hard on her little body.
Mae will be reevaluated by our local school district in the coming weeks to determine if there are any cognitive/motor/social/verbal delays right now. We will work together with Early On to address any of the deficiencies. She will also be going to U of M this week for a hearing test and next week to meet with the CHIRP team.
On August 24th Mae celebrated 365 glorious days! She is officially one year old! She weighs nearly 21 lbs. and has 8 teeth! She is starting to walk short distances without any assistance! She continues to be enthralled with Will and Luke as much as they are with her. She gives kisses willingly and smiles all of the time. She knows what she wants and expects things when she wants them! She wiggles for diaper changes and has truly made all of ours lives better. She is a God given miracle and we could not be more in love with her.
The Lord has done great things for us, and we are filled with joy. Psalms 126:3
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