Dr. Fearon visit

Update on the visit with our Apert specialist and plastic surgeon, Dr. Fearon. He comes highly recommended and the other Apert families can’t say enough about how amazing he is with our littles! He is up in the top best surgeons for Aperts in the country and we’re so very blessed to be able to have him!

I will begin by saying, Dr. Fearon took my stress level from 100 to 25 immediately... haha! We’re so relieved with the biggest statement he gave us, and that is to “offer him the most normal life possible, treat him like you would any other baby!” I’m still major picky about babies and germs etc, but I’m super excited to start adjusting a few things and being a bit more normal!

We will be starting the first 3 surgeries in March 2020 if all goes as planned. A little different from what other moms have said to me and blogs I’ve read etc, Dr. Fearon is what I am referring to as a “minimal surgeon”, in comparison to what many Apert families have to go through, of which we are so thankful! He will be releasing all fingers and toes on one side, then the other set on the other side 3 months later, as long as the cranial surgery can wait until the end. We will be measuring and watching to be sure pressure doesn’t began to build until then.

Dawson has been struggling immensely with breathing, especially since he had Rhino virus diagnosis(acts the same as RSV), his retractions are quite deep a Lot of the time. He is still on much needed oxygen and then the monitors as well (we’re trying to get these off).

We will be doing a sleep study in the next week or so to see what all is going on and if we will possibly need a trach, which we’re praying is not needed, but it may be necessary for him to be able to breath more efficiently and not cause harm to his brain for lack of proper oxygen. Dr. Fearon also let us know that the use of an inhaler and nebulizer is common in Apert babies since they tend to have RAD (Reactive Airway Disease), which Dawson has. We’re so thankful that we have found something that has helped!

Daws is really growing and doing well! He’s 12lb5oz and is now in 3m clothes! He has found his tongue as well as started to coo at us; It is so stinking cute! He’s VERY spoiled and loves to be held a minimum of 15 hours per day LOL! As of this week, he learned he has little hands (we call them paws) .. and is starting to suck on them when he thinks he’s starving haha!😍He’s drinking about 4oz every 4 hours and sometimes thinks he needs more!😂

We are so blessed with a handful of nurses and he is getting the best care possible! A huge THANK YOU to our ladies that help keep him healthy and happy!

Life is crazy busy, but we will always do our best to update as soon as we can, when there is a change of any sort, as well as milestones etc!:) We as a family are learning our new “normal” and trying to find a bit of all in all the chaos, so please bear with us through the quiet times!:)

Thank you for following along and we appreciate all of the thoughts and prayers sent our way!

RSV

We got to come home last night!! After hours of different types of testing, scans, blood work and about 10 different doctors trying to figure out what was going on, it was decided that Dawson’s stomach isn’t processing food very well, which is causing him much discomfort.

We did a 2 hour gastric emptying test yesterday, and at the end of the test, he still had more than 50% of his 3oz of milk in his stomach; and the whole time we were watching the test, the reflux never stopped once... it was continuously trying to come up his esophagus, all the way to his mouth. So instead of aspiration when eating, it’s actually the reflux to the mouth after eating, that is causing his throwing up, the aspiration at times and what we think may be where his constant pain is coming from! Poor baby, I can’t imagine what he has been feeling! So, we started a medication that will hopefully help his stomach empty faster and will continue his reflux meds for now! He is already doing so much better!! So far, we have a much happier baby since starting the meds! Going on 15+ hours of no crying!

As for his RSV, he’s on the uphill climb and on albuteral breathing treatments, which are helping tremendously!

I’m going to take this moment to raise a little awareness... it is RSV season now!

>>>>>>It is so very important to practice good hygiene when around a baby! Wash your hands, and then use hand sanitizer! Also, if you have been showing signs of sickness, don’t come around a baby! They can’t fight sickness as good as we can! And even when you feel well, never touch a baby without permission, and always keep your lips away from them. Showing a little “love” to an infant, often results in actually causing the infant harm! It just isn’t worth it!<<<<<<<

We so appreciate all of you reaching out and helping us, we are so blessed and have felt each of your thoughts and prayers!!

#baby #apertsyndrome #apertbaby #RSV #rsvseason #apertawareness

Sleepless nights

We were so excited to see my OB this week, who also was able to deliver Dawson! You couldn’t ask for a better doctor who is truly concerned and cares for her patients! Her staff have really set the bar high in comparison to other offices as well, they are so kind and attentive! We will miss seeing them (in a way haha)!

Dawson has seen his pediatrician twice now, and weighs 8.5 lbs! He’s growing so fast! We have figured out, by our multiple doctor visits, that he sure loves to ride around in the car; guess it runs in the family, or so I hear, lol! We are currently working on our referrals to Dallas since OKC doesn’t offer the same quality of service when it comes to the Apert specialized field. We do already have an appointment there, but having to get everything in order. Pray that insurance doesn’t give us too much grief! The Dr. feels that his desats could be being caused by acid reflux, which also could be why he has been so very fussy! We are trying to find out the causes of his crying since coming home. He will be getting his next MRI soon and it will hopefully help to rule headaches out as well. Being a newborn, it may just be colic alone that’s keeping mom and dad up day and night lol.

We have spoken to many people over the past couple of weeks, trying to figure out what the near future looks like, it has been so very busy trying to figure out each step, but we’re slowly getting some answers concerning his immediate care. We have a Physical Therapist now scheduled to come out weekly, which will be so good for him. Also, it looks like we may be getting a nurse to help us here at the house, he requires a LOT of attention, especially compared to just a normal newborn, and if that gets approved, will help us tremendously! It’s difficult to care for him and the two other kiddos efficiently at this point.

This is all there is for an update as of right now. As busy as I am, I’m hoping to post an update at least once per week. So be on the watch out for that! Thank you to each of you that are still continuing to pray and reach out to us!