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Declan

Introducing Declan. Declan is our previous Little Wonder, Joshua’s, little brother

 

Declan is our second child. Because his older brother Joshua has ML2 (Mucolipidosis 2) we knew there was a 25% chance for each of our children to have it. We love Joshua so much and although it is a horrible disease, we knew we would more than love another baby with or without ML2. When we were pregnant with Declan his pregnancy looked great and he showed no signs of ML2 in pregnancy. He was born without any complications at home. At first we didn’t think he had ML2 just based off of how much simpler his birth was and how well he nursed. But, there were also a lot of things that looked similar to Joshua and his early days. We wondered for the first four months as we waited for his tests to come back if he had so many similarities to Joshua just because they were brothers or because of the ML2. The end of July 2022, we found out that Declan also had ML2 and we would start the process again of getting him into every specialist to get baselines for monitoring.

We were of course heartbroken to learn that Declan also had ML2, but it was easier getting the news this time because we knew it was a very real possibility so there wasn’t the shock there that there was when we first learned about this disease. Declan was always a very chatty and wiggly guy. He developed at about the same pace as Joshua so that wasn’t new. He just did it with a lot more to say. Declan has done well overall with handling viruses so far. He is on CPAP due to his severe sleep apnea. He has always had a good appetite and loves food and putting everything in his mouth. Even though he ate really well his weight gain plateaued when he turned 1. So we started planning for a gtube for him the same summer we were getting Joshua’s. To reduce the number of anesthetics, because of the risks, we were going to have Declan's tonsils and adenoids removed at the same time ( this was the surgery that caused Joshua’s 7 week stay.

 

Because of how much has to go into surgeries for the boys booking them takes a lot of work to collaborate all members of the team. For this surgery for Declan we had to have a PICU bed ready, he would be intubated for 3 days post operation, we had to have the right anesthesiologist, the ENT doctor, the general surgeon, and he had to be completely healthy going in. This can take awhile to get all the schedules lined up. Because of this they didn't expect to get him in until November or December of 2023. By July Declan was starting to lose weight and with surgery still looking so far off we decided we were going to use the NG tube in the interim. Thankfully though we got a date for the end of August so he only had to have the NG for about a month before he got his gtube.

 

Declan’s surgery went very well and because he was still young there were no airway complications. He was intubated for 3 days, for me the kids being intubated is the hardest part. It is so hard to just watch your baby hooked up and sedated. He had a hard time staying sedated. Holding your baby that first time after they have been intubated is the best feeling. It feels like you have been sitting waiting in the fog, and finally there is a bit of sun shining. When we extubated he had some challenging withdrawals from the sedatives. So we went home with some meds to ease that transition. Declan has had complications that we are still trying to figure out since his gtube surgery. But he has also grown so much in the last few months. He has gained 6 pounds since we started with tube feeds, which is a huge amount of growth for kids with his condition. Declan is our super smart, inquisitive guy.

 

He loves solving little problems and figuring things out, like how to put a lid on and off a marker and eat it, how many toys can you fit down a heat register, those kinds of things. He is a HUGE daddy's boy and likes dad to carry him everywhere. He will be turning 2 here soon and is getting close to crawling, he has mastered rolling already. And now he gets to start the adventure of being a big brother, so far he is not so thrilled with the plan, but he will be more than happy when baby Kegan starts to play with him. We are thankful for the many blessings that God has given us in and through our children.



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