What 22q means to me and my family.

November is 22q awareness month.


Our family had the privilege of adopting a wonderful little guy who has 22q deletion

What is 22q?

22q is a lot of different things to a lot of people. To learn more about what it is as a whole, I suggest you visit 22q.org as they have a MUCH more in-depth look at what it is. I will only be talking about what 22q means to me and my family.

My little guy was diagnosed with 22q11.2 Chromosome Deletion. Which basically means he is missing a portion of his 22q chromosome. The 11.2 part to be exact. There are SO many ways this affects children and adults, nearly 180 different ways. (A lot of the children with 22q have similar facial features. I didn’t see it until I googled “Children with 22q.”)

How does this affect us?

We have dealt with, and are currently dealing with, some kidney issues; the major issue being that he only has one. We visit our Nephrologist several times a year to do some major blood tests to make sure the one remaining kidney he has is functioning as it should be. Unfortunately, he has some acidic blood which we take a prescription for. Fortunately, at this point that is the only thing wrong there. I say “at this point” because children with 22q change and grow, and when they change and grow, well, things change. As a result, we have routine blood tests every two months or so to make sure nothing has changed.

Next, we are working with our Endocrinologist and monitoring his growth hormone and thyroid levels. Just these past few months we’ve had some change requiring him to take thyroid medication. This brings us back to the routine blood tests. Had we not gotten his blood tests done we wouldn’t have known he had some thyroid issues.

22q babyWe also visit with our Gastroenterologist and make sure the “plumbing” is working as it should. It doesn’t. I’m not going into great detail on this one. Lets just say that we have some problems with constipation and we have been treating it and as long as we remember to get him his medication on time, we have no problems. Fortunately, we don’t have to do lab work for this doctor.

We visit with a Ear, Nose, and Mouth doctor for several reasons. Children with 22q have seem to have issues in this area all around the board. We haven’t had to deal with a lot of these…yet. What kind of issue? Things like needing tubes in his ears, enlarged adenoids, cleft pallet, the list goes on. We also see this doctor for some cranial issues he has unrelated to the 22q.

We did have to see a cardiologist due to him having three holes in his heart. They all closed up with out surgery and we only have to see him once every two years or so. YAY!

Our Urologist said that since we see a Nephrologist, we don’t need to see him anymore. Another YAY! He was first in-listed into our army of Doctors because of testicular issues, unrelated to 22q. He is the one who got us in touch with our Nephrologist. I feel like he deserves a little shout out. He was extremely helpful, and got us going in the right direction.

That’s it for our specialists doctors, I think. Not only do we have those issues above that we are monitoring and keeping a close eye on, we also have a team of therapists that are working with us to get Ollie where he needs to be developmentally. We have Physical therapy and Speech therapy every week as well as having people coming into our home to help us with physical therapy and his overall development. We have come really far in a year and we are catching up. There are children who have 22q who have speech issues and developmental delays but I cant tell you with 100% certainty whether these developmental delays are from 22q or from things that had happened to him earlier in life.

How Does 22q affect my family?

It really has become “normal” to us, at the beginning when we were driving to appointments everywhere, it took its toll on me as the majority of our appointments are a 2 hour drive one way, and it was just mentally exhausting. I did leave my part time job in order to be home more, we lost that extra income. We do have a lot of appointments still, but we were able to get many of these in our home town which helped tremendously. Our oldest has adapted really well and actually get disappointed when he doesn’t get to see some of Ollie’s specialists, he has a few that he likes.

Another way we are affected is just not knowing. We DON’T know what Ollie will be like one year from now nonetheless 10 years from now.

family picture with our 22q baby

Our “first” family photo

 What will happen in the future?

Well… where to begin, there is such a huge list of things that could happen or could not. 22q is sorta like playing the lottery, you may or may not win. At this point we are just taking it one day at a time, and when we get to the future, I’ll let you know.




An unexpected, but welcome, adoption.

My husband and I had no plans in the works to become parents through adoption. It just sort of happened. We were trying, albeit not very hard, to have a second child and it just wasn’t happening. We didn’t plan for the first, so why plan for the second. Our thoughts were, if it’s meant to be, it will happen. Well it happened, just not the way we expected.
We had gotten word that a relative had their child placed into DHS custody. They wanted him to be placed with family and were calling around to different members of the family trying to find someone to take him in. My husband and I spent MANY nights up late discussing the situation and wondering if this was the best thing for our family. I was already staying at home with our oldest son and there wasn’t anything stopping us from saying no. We came to the decision that we were in the position to take him in.
At this point he was placed with a wonderful foster family. We called the social worker and put our names in the bucket for a placement choice. During this time we learned that he had several developmental issues and some physical deformities as well. We’re starting to second guess ourselves now, and are wondering if we made the right choice, are we getting into something we will regret. After several discussions with the social worker we decided that keeping him with the foster family was the best choice for him at this point. We lived an hour and a half from him and his parents, and with one of his physical deformities it wasn’t the best choice to have him in the car for several hours a week driving to and from visits with the biological parents. We agreed to still be an option if things were to change. We figured that him joining our family just wasn’t meant to be and went on with our lives.
A couple months later the social worker calls me and says that the foster family has decided that he would be better off placed with family, and like that we were in the running again. We then started the process of having a home study done to become relative placements. That required us filling out paperwork about us and our household, asking for references from friends and family and having someone come into our home twice to ask questions and make sure that we had a safe living environment. Then we just waited. Waited for the home study to be turned in, waited for it to be approved, waited for the social worker to call, and waited for him to join our home. During all the waiting, I started going through things I had stored away from our first child sorting out clothes and making sure we had what we needed.
While waiting we had the opportunity to meet the little guy. The foster family welcomed us into their home. It was like love at first sight. We had heard so much about him, but had only seen pictures up to this point. He was the smallest little guy ever. I had expected a normal sized baby for his age and was very surprised to see how tiny he really was. He stole our hearts. Finally a month later we got the phone call that he could be placed in our home whenever. He joined us on my birthday. It was once of the best birthday presents ever.
The first few months were overwhelming. Not only did someone new join our family, but that person also came with doctor appointments, parental visits and worker visits. We were prepared to have jealousy issues with our oldest, but we had the opposite. He would cry every time the baby went to see his biological family. He would become very possessive of anyone who held him, saying things like “Don’t take him away, he’s mine” Or “He lives with us, you can’t take him.” We were worried about what would happen when the baby went back home to his biological family because he had a huge attachment.
We started PS-MAPP classes to become foster parents. After taking a class one night a week for 10 weeks (technically ours was 11 weeks due to a cancellation), filling out what felt like thousands of papers and more home visits, we were finally approved to be foster parents. By the time the approval for foster parents came through he had been in our home for 180 days which meant that he could now be adopted by us. We then started the paperwork to adopt.
It felt like a long process, it was almost 9 months he had been with us, just under 12 months he had been in the system. I know that there are others out there that go through a lot more time and money to be able to adopt a child. Here we are, not looking for adoption, and it falls into our lap. There is a time and plan for everything. My husband and I agreed that if we had another child when we wanted one, there was no way we would’ve been able to take in our new little guy. To all of you parents out there or those who are trying so hard and just keep hitting road blocks. It will happen when it is meant to. Sometimes we try to control so many aspects of our life that we need to take a step back and let things happen the way God planned.