When we chose to adopt a child with Down Syndrome we were prepared, as much as we could be, for any and all medical issues that came with her. We were open to any other medical or behavioral issues as long as the main diagnosis was Down Syndrome. When we brought Sofie home we were armed with a priority list of what we needed to tackle and check out to give her the best start possible.
With Down Syndrome there are some fairly common medical concerns that may need to be checked on. These include checking or screening the thyroid, hearing, eye sight, possible GI disorders, neck-spine stability, heart defects or disease, dental, airways, nutrition, orthopedic disorders, OT needs, Speech therapy needs and Physiotherapy needs. There are a few other more common “ailments” but they are not generally screened for, like seizures or autism. You have it with symptoms or you don’t.
Within the first few days we had Sofie in Canada, we took her too see a highly recommended pediatrician. He was wonderful. At that point, we didn’t have a Care Card for her but we needed to make sure she was not in any immediate need of medical intervention. Our main concern was her undernourishment and nutritional needs at that point, as well as to getting her under a doctor’s care. The doctor was wonderful and checked her out thoroughly. He did not see any immediate concerns other than getting her to put on some weight. We were instructed to give her any thing and everything she would eat and once her Care Card came through we would pursue the rest of it.
Once her card came, the medical appointments started. There was a month there where we had two or three appointments for her each week. It was crazy! She did wonderfully though and we all survived and kept it straight some how. I had to develop a system within a binder to keep it all straight and to bring with me to each doctor appointment, since they frequently ask about the other’s reports.
I think we have finally seen all the right doctors in order to address any unknown medical concerns, to get any baseline data needed and to confirm that the information we got from Bulgaria was correct or not. I’m am very proud, relieved and blessed to announce that Sofie is one healthy monkey!
Here is a break down:
Thyroid – I need to get her results on paper but no news is good news! She has a healthy normal thyroid!
Gastro-intestinal issues – Blood tests were done to confirm she doesn’t have celiac and she has no symptoms, such as reflux, to suggest any other GI issues. No known obstructions or abnormalities either. She does have constipation frequently but that is most likely due to her diet and the fact that she doesn’t drink enough. Since addressing her liquid intake it has been getting better.
Dental – We had a relatively short visit with the dentist to try and get her used to it and address any immediate concerns. From the short peak she did take in to Sofie’s mouth, there doesn’t appear to be any major problems. She didn’t see any cavities. There is some crowding, due to Sofie’s small jaw, but nothing of concern at this point. We hope to get a full cleaning in her in May without sedation. Not sure how that’s going to work.
Air way – I pushed to see an ENT in order to address her possible sleep apnea. Sleep apnea is almost impossible to diagnose at this age and also difficult to treat. There is no major concern here but we are going to see a specialist to discuss possibly taking out her tonsils and adenoids, which may help. I doubt they are going to recommend it though.
Hearing – We had two hearing appointments because the first one was inconclusive. The second appointment suggested some slight hearing loss but not enough to give a hearing aid for. I was unconvinced at these findings because of how inconclusive they were the first time. We will monitor it in the coming months and years.
Eyes – Sofie has some far farsightedness but again, not enough to warrant glasses at this time. The doctor even thought she might grow out of it. Her right eye turns in because of it, which we had originally thought was due to strabismus. But, no strabismus here! Her right eye also leaks a little. This has lessened since we’ve had here though and the doctor thinks she might also grow out of this as her passage ways grow bigger. If it still leaks in a year or two we might do a duct probe to open it.
Neck stability – We did the x-ray to check and it is totally normal. It isn’t conclusive but unless we start seeing symptoms of issues we should be in the clear.
Heart – We were told from the orphanage that Sofie had a foramen ovale that didn’t close a birth as it should have, but did close before her first birthday. We were told she was left with an abnormal murmur. After a successful visit to Children’s Hospital, we got the awesome news that Sofie’s heart is totally normal! Not even a murmur. No follow up is needed until she is 60! Woohoo!
Orthopedics – Her physio has suggested that Sofie get orthotics because of her flat feet and turning in heel. Her pediatrician doesn’t love orthotics and prefers Pedro shoes. Since we have orthotics covered we are going to got with those. We are going to wait until the summer, just before school, when she is going to be wearing her shoes the most and get the most use out of them before she grows out of them. We’ll look in to the Pedro shoes but the only place you can get them is Ontario.
Nutrition – Although Sofie is getting really good nutrition now and we get extra in her with a daily pediasure, we don’t know what all the effects of 3.5 years of malnourishment will have. She is gaining weight, not fast enough and she isn’t growing as fast as we’d like either. She is on a very high calorie diet but still has days where she doesn’t want to eat much. Her drinking has gotten much better but still needs to be more consistent. The doctor isn’t concerned about her lack of growing “yet”. He thinks there is just a lag and nutritional catch up is needed in her bones. I hope that’s it because I don’t know what the next step would be. We are closely monitoring it with a dietitian too.
Therapy – We hooked up with the local Child Development Center in order to start Sofie with the therapy’s that she needs. She is in a 6 week OT group to help her and us with her fine and gross motor skills. It also tackles some speech therapy. Speech is my priority right now. We also see a physio every other month or so to track her progress and give me more tips. We are meeting her in the pool this week. While I don’t feel like Sofie is getting enough intervention through the CDC we can’t afford to go privately at this point and don’t have any huge concerns to warrant it either.
Any concerns that we have for Sofie are all very minor. Just in need of some orthotics, some fattening up, and maybe some glasses one day! I’m pretty sure we couldn’t have been more blessed in the health department with Sofie.
Actually, I feel a little guilty too. I know of so many families with children who have major health concerns and require a lot of interventions, both with and without DS. We were open to and expecting health issues. We were prepared for monthly trips to Children’s hospital and daily therapy. We expected heart monitoring, surgery and corrective splints. Why did we, who were more prepared and aware of what could come than most birth parents, get so blessed with a perfectly healthy child when so many other parents struggle? I know it is kind of weird that I feel this way, but it is there. I’m just so amazed how perfect Sofie is and I’m thankful for how truly blessed we are.
Becoming Human 