HOPE OF A STRUGGLING MOM

 

Struggle, struggle, more struggle.  One of the things we have to remember is there’s much going on the world right now and some of us have other children to care for, not just our child with special needs.  My son has been having his own set of medical issues and as a result, this has made things much more challenging.  Some days, it really feels like it’s too much! In regards to Anna alone, we have been seeing an airway orthodontic specialist in order to do palatal expansion.  This is because children with Down Syndrome have a midface hypoplasia (underdevelopment of the mid face) secondary to their genetic condition.  As a result, this can often times cause airway issues leading to obstructive sleep apnea or upper airway resistance syndrome which can lead to multiple medical problems in the future.  In addition, although not proven, I believe that by expanding all of it, that she might have a better chance of accommodating her tongue.  Hopefully, in the end, this will improve overall speech.  We are persisting through talk tools to help, but it has been a challenge since her articulation has dropped since placing the two expanders.  She also has been sliding her jaw back and forth which was very frustrating as we were trying to get her to keep her jaw in the middle with the Talk Tools.  I am actually grateful I’m doing Talk Tools with her currently because without out, how much worse would this be!  But the road of this palatal expansion, for a 5 year old to go down can be trying.  The many appointments to try to get the expander device fitting right and functioning well, has been another added stress.  She had the expander, but then in a few weeks, it became loose.  We tried fixing it multiple ways, but in the end, nothing worked, and we had to do another mold with another device.   Then, the lower device ended up eroding the inner part of her gums causing painful sores in her mouth.  The orthodontist was great and she did end up fixing it to fit better without hitting the sores and they healed very quickly.  I know some may wonder if it is worth it, but I truly think, that when I consider the number of medical problems that can occur with a lifetime of poor sleep, this temporary inconvenience is something I’m willing to risk.  So, I’m still pressing on to continue with this treatment, but I sure will be happy when I’m on the other end!   The other issue we have been facing is Anna’s history of imperforate anus.  As a result, she is still not potty trained.  We are still working to get a good bowel regimen for her in which she can go daily without having smears in between.  What a nightmare poop problems can be!  You really don’t realize how stressful and how obsessed we can get as parents over poop!  I know many of our children suffer from constipation so believe me, I get it!  But, there is hope, once again, I feel like the theme of my blogs, persistence, will hopefully, pay off in the end!  I will let keep you posted!

TalkTools Marketing Dept. 24 Sep 20

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