Join Angela, Axel, Abel and Asher as they welcome their new sibling home.

Wednesday, November 24, 2010

Pushing the Envelope

I know a lot of you who are reading have adopted a child with DS. Of those who have, some of you were like us and already had a biological child with DS.

Did you ever have the thoughts of "are we pushing the envelope?" when it comes to DS? We are SO excited to be bringing Axel home, but we can't help but wonder what secrets his body holds.

Angela has had MANY health issues, and numerous major surgeries. (I stopped counting at 23) Most of her stuff was GI related, but she has a couple odd little things that are supposedly unrelated to DS, but of course having the extra chromosome means a slightly increased risk for just about everything under the sun! LOL One of Angela's medical issues, Cricopharyngeal Achalasia, requires us to go to Boston Childrens for treatment. (Ummm...we live in Minnesota!) That is where the only doctor in the nation is who is skilled enough to treat a child with DS with the disorder. Her next step is a major thoracic surgery which we're not ready to pursue at this time.

There are four major conditions that are related to DS that we have manage to avoid. Really, to be honest, sometimes I begin to feel like we are a moving target, zigzagging back and forth to avoid being hit by the next arrow!

Angela was born with a large ASD. We spent 3 years preparing for open heart surgery (In 2000 it became a closed procedure performed in the heart catheterization lab!) We found out that it had closed on it's own just weeks before said surgery.

I, personally, always feared Celiac disease, since I'm a horrid cook and spend a lot of time generally avoiding the kitchen. Fortunately it was another bullet we have (so far) avoided. Angela does carry the gene for it, which means she can develop it at any time, so will continue to be tested for the rest of her life.

Atlantoaxial Instability (AAI), and Atlantooccipital Instability (AOI), while said to be very rare, has been found in several kids who I personally know and have met. (versus those who I only "know" online!) The above link goes to my friend Renee's blog. Her daughter Kennedy had the most severe form of AOI. Angela has had several full-spine MRIs over the course of her life, and her neck has always been fine.

And then there is the one all parents fear, but those of us who have kids with DS, that fear becomes a reality far too often. Kids with DS are more prone to Leukemias (both AML and ALL) than children with only 46 chromosomes. I have watched the children of many friends fight cancer, and too many friends loose their children. While it is rare for a child with DS to be diagnosed for the first time after the age of 4, it does happen. We become hyper-vigilant for the symptoms, and try not to freak out when our children complain of joint pain, or have strange bruises (even when we WATCHED them step off a step wrong three days before. Eh hem!!!! )

So what mysteries DOES Axel's body hold? Is he saving anything special for us? Other than an echo at birth, I don't think he's had any of the usual screenings done on kids with DS. When he comes home I'm thinking of making the rounds to just about every medical specialist there is. Angela has had 16 types of specialists over the years. I waiver between Axel seeing all of them, just to make sure something isn't missed, and just doing a "wait and see" kind of approach. There are positives and negatives to either approach, including financially, logistically, and the "don't invite trouble" type.

I DO know who we're seeing first! These are in no particular order, but are at the very top of the list. Who we see first will depend upon how quickly I can get him in to each one.

1) Orthopedic medine: Axel needs to be checked for AAI/AOI
2) ENT/Audiology: He needs to have his hearing thoroughly tested, and I want him to have a general check up with Angela's ENT.
3) GI (gastroenterology) This one may move down the list a bit based on what I see once he's in my care. He needs to be screened for Celiac Disease, and H-pylori is also common among children adopted from Eastern European countries.
4) Ophthalmology: Axel needs a thorough eye examination by a pediatric eye specialist.

I'm also considering a visit to the International Adoption Clinic with the University of Minnesota. Their tests and assessments are very thorough, and they're used to seeing kids adopted from Eastern European countries. I hear both good and bad opinions about similar clinics around the country. If you've been to the one at the U of M, please comment, I'd love to hear your opinion!

Three more days, and I'm on that plane and all my questions will be answered!!!!!!


  1. Leah- sorry I don't have some wonderful advise to give.Just want to say that I can cook and learn to prepare gluten free products for my husband and 2 sons...her in South Africa with limited resources- I'm sure you will be able to exceed that by far. At times I wish that I could offer to accompany you- you know- like you did with Shelley- I thought I'll offer to cook-he-he

  2. Leah,
    We took Kristina to the U of M adoption clinic. There was a LOT of good information given to us but we have chosen to get services closer to home. And we use Children's for her CF...Jovan was never seen there..

  3. Yes, the adoption clinic is NOT for long-term care. It is for initial assessment when the kids get in country, and after they've been home a short time to do a one-time developmental assessment. Some International Adoption Clinics do the assessments in the child's native language, so you can get an accurate picture of where your child is developmentally, rather than always wondering if a child didn't understand something due to the language barrier. This is why, with older kids, they do them shortly after getting home BEFORE they loose their native language comprehension skills.

  4. Leah,

    We went to the IAC at the U of M and have nothing but good things to say about them. They also offer hearing and vision - Milo got very thorough screenings while there - and the staff was great - extremely patient with my fussy baby.

    If you want to use the U, make your appointment now because it can take a little while to get in. Also, let them know what country you are bringing Axel home from because they do have doctors that are a little better with kids from different parts of the world. The doctor we saw was actually the doctor who travels to Ethiopia and checks up on the kids in the care center as well as training the nursing staff there. It was very reassuring.


  5. @ Abby: Thanks for the information! I did email them on Tuesday for an appointment, with our anticipated return date, and included what country we're adopting from. Thanks again for the info!

  6. You know how kids cover their eyes and say "I can't hear, you I can't hear you". Well, I'm covering my eyes and saying "I didn't read this, I didn't read this!". I am going into parenting my first child with DS with eyes SHUT so I don't run away in fear with all those stats! I have put myself on a "need to know basis" in, once he is home and there's no turning back, I need to know, but not until then!! :)

    Saying some prayers the next few days fly by for you, the trip is smooth, the before you know it, he will be standing right in front of you!!! Blessings, Jennifer