9/15 4 Months old, monthly update!

Hello everyone!

We have been enjoying our little guy and being a family! Thought I could get on here today to go over some of the fun things we have been doing in the past month and also give you an update on the medical side of things for our little warrior.

We have a big cranial facial appointment today with his doctors and a couple of the surgeons to go over a surgery schedule for our little guy. This morning he weighed in at 15 lbs. 12oz. Measuring in at 25 inches! He is part of the 2 foot club now!

Walker has done a bunch of first this month! He went to fair, saw his first car races, helped his father stain the deck, meet more people, go to the Everett marina and look at boats, celebrate friends and family birthday parties, go to and finally go on his first camping trip! He also watched his first Seahawks game!

Walkers daily routine now is waking up his parents around 5 am wanting to snuggle with them, we bring him into our bed and snuggle with him till about 9 am. With me I get to snuggle with him for about an hour before work and there is no better way to start your day. He then hangs out with mom some days include a appointment to travel too, some days are his therapist coming to the house, some are his great aunt susan spending the day with him so mom can have a day to take care of the house. He gets to eat from a bottle during the day when he is ready to eat, does tummy time, play his piano, look at his picture books and moving crab. When I get home from work he is happy to see me, we turn on the tv and will watch mariners games the night they are playing. He then gets a bath around the 6th inning of the game has his last bottle of the day and falls asleep around 8:30-9. During the night we use his g tube to feed him and with this lets him sleep throughout the night.

Couple weeks ago Walker had a sleep study done and was confirmed that walkers sleep is fragmented. Meaning he isn’t sleeping well and has sleep apnea, we are still waiting to talk to ENT to see what they would like to do to help him sleep at night. Whether it’s taking his tonsils out, opening his nasal passages bigger or both we have to wait to the end of the month to see what they want to do.

The cranial facial team has done an amazing job of coordinating with the doctors and surgeons to get us with everyone they want us to see in one day.

Today with the doctors we are meeting with his feed specialist, feed pump specialist, hand surgeon, cranial surgeon, cranial facial doctor. It’s a busy day meeting with all them but it’s nice that they all can meet with us in one day rather than us having to come down multiple times.

Feed specialist first!

Use the #1 nipple, continue with what we are doing, no need to do bottles at night if he isn’t fully awake. Wait for his cues during the day for bottle. Try mam #0 if wanting to try different bottles, stay away from avent, if switch bottle stay with it for a few days unless he is not happy at all go back to dr brown.

cranial surgeon: he likes to see that his skull isn’t growing up and doesn’t think that Walker will need many surgeries for his skull. He was stating that he is going to need one, maybe two but if his skull stays how it is right now will need only one surgery. He did state that he wanted to see Walker back in about 3 months for a ct scan and his last consultation before scheduling the surgery. I have spoken to many of you about a surgery that we have seen with another baby that has the same genetic mutation as Walker and that surgery is now not a necessary one, if things stay the way they are going. He did say that he would want to do the surgery before he is 18 months old. Might do it between hand surgeries.

hand surgeon: This was the first time he met Walker but has heard a lot about him. He stated that walkers hands are not as bad as other apert babies, he has a couple concerns but thinks he can have full range of motion in both hands after two surgeries. The thing that Brandi and I didn’t really think about is he is going to need skin graft on his hands and they will need to take it from somewhere else on his body. This is scary, we looked at each other and cried, to think about our little boy needing skin taking off of him to be put somewhere else on his body is a tough thing to comprehend. The surgeon said he has done this multiple times and will do his best to make the littlest incision possible. He wants to do the first surgery when Walker is 8 month old and the second one at 12 months old. First surgery would be separating his index and pinky finger second one separating ring and middle finger with making some corrections with his thumbs as well.

hand first, then cranial (if needed), then hand, then cranial. Mix ENT surgery as well.

nutritionist: bump up to 115 ml 7 times a day. Cues during the day and 3.5-4 hours at night. Rate to 230. Get 750 ml minimum in him for hydration. Continue with gas drops, famodine, send progress report in two weeks.

Cranial doc-

try a windy for his gas, drawn some labs to see if we need to drop iron, they are going to have a full team meeting to discuss what order we will do everything and find out the schedule for the surgeries will call with updates in the next month.

We then did some blood work and his iron looks normal so we are getting rid of that med! All of the other things they tested for today are all normal which is great!

It has been a busy month! We are growing as a family! He is a very popular guy and busy as well! We are still trying to schedule times for him to meet everyone we are doing it slow and steady, with his surgery schedule now getting closer we are gonna pull back on the meetings as his surgeries are all dependent on if he is healthy or not. If he is sick than the surgery will have to get rescheduled. So bare with us! Thank you for reading all of this I know it’s long post but had a lot to catch up on!

-Walker, Brandi, Tyler