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All the medical updates!

Posted Apr 18 2012 8:36am
The last few weeks have been MEDICAL weeks!  We go through seasons at our house where we will have an appointment here-- one there-- then, we have 19 in two weeks! :).  Thankfully since many of them are the same specialists for different children, we can combine appointments and get things accomplished much quicker and easier than we might if we were headed to many DIFFERENT specialists all the time :)

Yesterday I took Wesley to the GI doctor and he's still sitting right around the same weight.  He gained a little, lost a little.  He isn't interested in the Pediasure, so we switch flavors for a time, then he gets tired of those, so we mix and match, and he gets tired of that, so we do blended, and he gets tired of that, and...  It's been a constant struggle to find something that he'll take!  He doesn't LIKE that he has to drink so much.  He wants to EAT.  But he gets about 6-8 bites of food in and he's tired of chewing and swallowing, and he's DONE.  So... drink he must to get calories, which means he HAS TO drink before he gets to have food... it's just a battle.  One we're done fighting.  Wesley is being scheduled for a g-tube placement in the next few weeks.  The goal is for him to be HAPPY and FULL both at the same time... which quite frankly just doesn't happen very often right now.  We can do overnight feeds and daytime feeds between meals.  Then, when we all sit down at the table, he can have whatever he wants of what we're having and not HAVE to have something else first.  I hope and pray this will be a step in the right direction for him.  As he grows, his condition doesn't "get easier" like many kids with Down syndrome that learn to eat later on, etc.  His is a muscular issue with chewing and swallowing, and one that is sortof something we've known was coming for the last year but hoped he might just all of a sudden turn around and just improve based on his other major accomplishments and overcoming so much in other areas.  For now, we schedule surgery.

Brianna saw the opthalmologist on Friday due to squinting to see the TV with her glasses on, and she was taking them off regularly when playing quietly with small toys.  Her glasses script has been LESSENED which is great :)!  We also took the other 5 kids with us (I had a sitter come too... and Lynae was along for the ride) and the 6 that wear glasses all were fitted for new FLEXIBLE frames!  YAY!  We are so blessed that these frames were approved to be covered for the kids with no out of pocket expense (we offered to pay in to each pair since they don't generally approve these but the perosn working with us to get glasses felt strongly that the kids would benefit from them since their glasses do tend to be broken pretty often).  They will all have the SAME glasses frames, in 3 different colors and 3 different sizes, and varying temple lengths in addition to that, but... they will all have a good pair of glasses! :)

Staying on the eye topic, Micah, Emma, and Wesley all saw opthalmology a couple of weeks ago and all received new scripts as well (Aleksa and James are on every 2 years to see opthalmology). Wesley's script increased, Emma's changed slightly, and Micah's is lessening a little as well.  Emma had a correction for astigmatism added to her script.  Those three changes have already been made in the glasses we buy as an 'extra' pair from WalMart (free replacements for a year!!) and they are all wearing them well.  Thankful we'll have the flex frames as their main pair pretty soon, though!

Brianna, James, and Emma went to cardiology last Thursday.  Brianna sounds good, and they didn't do an echo this time.  She still has a mild leak in her valve from the last 'stitch' in her open heart surgery, but she will be seen again in 6 months and likely moved back to annual appointments at that time.  Emma has a moderate leak that may require an additional surgery in the future, but it's not being contemplated right now.  She'll continue on every 6 months for a while. They did an echo and it's "ok" for now.  James had an echo to check on everything for him and he... IS RELEASED! :)  James had an ASD and PDA that spontaneously closed before we even got him, and he had a history of spontaneous pulmonary hypertension, so we continued to monitor him for two years with our cardiologist to make sure we weren't overlooking anything from his past when he changed providers.  Thankfully, his PH levels look great on echo and he has no other symptoms to indicate otherwise (he still sees pulminology though!), his heart is all healed up and looks great, and this was the LAST echo that he should need! :)  I love that kind of news!  Hoping and praying that Lynae will be released at her next appointment, and Micah as well!  Then we'll be down to cardio care only for our two with major repairs.  What a blessed day that will be!

Last Wednesday Brianna and James went to endocrinology due to unusual thyroid levels for Brianna and hypothyroid for James.  Both of their bloodwork (including their annual screenings due to their diagnosis of ds) came back NORMAL!  That means James stays on his low-dose med and Brianna can continue to be unmedicated!

On Tuesday last week Brianna, James, and Micah went to the dentist, and I shared a bit about that experience earlier on. :)  None of them have cavities, and all will go back in 6 months for a cleaning. Yay!

Monday (yes, that's EVERY day last week!) I had an OB follow-up and things are going well.  My level 2 ultrasound and meeting with the perinatologist is this Friday.  Maybe we'll get a peek at the baby's gender then? :)

The previous week on Thursday Aleksa saw the ENT.  We will be switching ENTs.  She failed both hearing tests (OAE and Tymp) in both ears then passed just the OAE in one ear on a second attempt.  Both her tubes are out (one had been for several weeks and the other was already out at 2 weeks after) and she got them just about 8 weeks ago. The ENT's solution was "wait and see" if her hearing improves, or put more tubes in. My solution is to get my 9 1/2 yr old to hear, now, without tubes since that was unsuccessful (and actually caused 2 ear infections, which she'd had none of prior, just uninfected fluid).  There are devices to bypass the outer and middle ear which seem much more appropriate than "wait and see" when dealing with a child that has likely never heard 'normally' in her life and is having a very difficult time trying to figure out life without adequate hearing in a totally different type of situation (family vs. mental institution).  She's been home for 16 months now, and this ENT has put off doing anything but "wait and see" and the one set of tubes (after a year).  Time for change...

And finally... that Monday Aleksa and Emma went to the dentist for their first visits.  Aleksa wasn't happy about it but survived.  Emma did great, surprisingly!  Still needed some attention, but didn't fuss or wiggle too much.  Both have some cavities (no surprise) and we are waiting for them to have sedated procedures scheduled.  Both of them also have teeth that haven't fallen out despite their adult tooth coming in behind them (this is pretty common for kids with Ds) so those baby teeth will be pulled as well.

And then our week will come to a close on Friday with our 3 weeks of doctor appointments with a total of 23 doctor's appointments!  Tomorrow are Kristopher and Emma's well visits, and Friday my Level 2 ultrasound. Then 3 weeks with absolutely NO scheduled appointments (of course we're waiting on 3 sedated procedures to be scheduled...).  It comes in waves!
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