Saturday, March 8, 2014

Catching Up

Sorry I kind of left you all hanging since my last post.  In the weeks since we pulled Leo from the public school's developmental preschool and moving the girls back to their elementary home school (a hop, jump and a skip from our house), our schedule has been a flurry of doctor's appointments, IEP meetings at school (annual meeting reviewing and tweaking the supports in place for our kids), a couple of fun "field trips" for Leo and a little spring cleaning on top of our otherwise crazy days.

First off, we have a few more answers regarding our newest diagnosis of Ehler's Danlos (Reagan and Leo so far).  It was confirmed via his echocardiogram that Reagan has a mild dilation of his aorta, but the ordering doctor is checking with Cardiology as to whether we need to treat it medically yet.  We don't know the full impact of that yet, but Dr. Escobar explained there is a medication used to help this condition where to my understanding an aortic aneurism can form due to the connective tissue problem.  I'm still learning about Ehler's Danlos and don't have a ton of details as of yet.  As I mentioned on my last post, I'm avoiding Dr. Google.  There's just too much information that may or may not apply to our situation and I don't need the added stress of being misinformed.

Since Leo has the same "mistake" in his genetic makeup, he will also need an echocardiogram. We are waiting to hear from the company who did the original genetic testing last year on 5 of us on whether or not they will check Matt's, Kaelan's and my blood work looking for the "mistake" in our genes as well.  They initially refused, but with Reagan testing positive to the aortic dilation, I'm hoping they have a heart (pun intended) and check for us.  That leaves Riley and Lily, who will need to have blood work done to rule out whether or not they have Ehler's Danlos too.  I'm especially hoping Lily doesn't have it with her already complicated heart history and I'm hoping the echocardiogram she had back in November included measurements of her aortic valve so we don't have to do another one of those if she does end up having ED.

Yesterday, I was told Lily's severe allergic reaction to the antibiotic Omnicef is called Stephen-Johnson syndrome.  Thank God we had her diagnosed in the early stages because complications from it can lead to death.  Matt told me the basketball player Manute Bol died from kidney failure brought on by Stephen-Johnson syndrome in 2010.  Lily is recovering fairly well, but you can still see the remnants of the rash on her legs and arms.  I was told the affects of the rash (including pain) can last for weeks.  I'm still pretty paranoid it's going to come back, but the dermatologist she's been seeing is very happy with her recovery so far.  

Due to all that Lily's been through since January, I've let a few of her bad habits crop up like eating and drinking upstairs in her room, playing a ton on the iPad and watching hours upon hours of her favorite DVD's. She's missed a ton of school as well.  I'm trying to decide when the tough love is going to come back, but it's been hard to be tough after watching her suffer so much.  I think slowly reintroducing the rules will be best and getting her back on her regular schedule too.  Methinks there will be much protesting though.

Another topic I've been neglecting is Dasha's Baha hearing aid.  She has been wearing it since the end December and we've been very happy with how it works.  Her hearing is finally within the normal range and we've already seen an improvement with her articulation and response time.  She will have to relearn sounds now that she can hear them properly and her speech therapists (and us) are working diligently for that to happen.  Mostly our only issues have been from the actual abutment implant itself.  Where the screw is implanted in her skull, we've had some mild healing concerns since it was surgically implanted last August.  We've been trying a couple of protocols to help the skin around the abutment including 2 different steroid creams and they've helped, but I just wish it was perfectly healed.  I'm not all that convinced Dasha isn't messing with it at night in bed.  :/

Izzy is doing well on her new medicine regime and we can already see more focus and detail in many areas at home and hope it is occurring at school.  She created this Lego house all on her own and was quite proud of the finished product as were we.  This is something she's never attempted before now.

Finally, Leo is reciting the alphabet, colors, days of the week and counting to 10 with great gusto.  Apraxia is making it very difficult to understand much of the rest of his speech.  He is replacing certain sounds with other sounds (i.e. M for W), dropping sounds and still inhaling even other sounds so he is increasingly becoming frustrated and repeats himself a lot in the hope we will comprehend him (or he just loves the sound of his new speaking voice ;P ).  His speech is definitely a work in progress, but progress is what we are definitely seeing.

Next week's schedule of Leo's Exceptional Excursions (what we are now calling his field trips) will be The Children's Museum of Indianapolis and a park (weather permitting).  :)


1 comment :

Susan said...

Hello! Love your family:) Just an FYI...they could do a magnet for your daughter's BAHA. That way there is nothing sticking out of her head for her to touch. I know it means another surgery, but it may help if her current incision area is not healing.

Susan from Boston
Teacher of the Deaf/Hard-of-Hearing