Thursday, July 17, 2014

the breeze is blowin!

We are not in the midst of a storm...but i would say there is a good strong tropical breeze in our home lately.  Strong enough to make your hair a mess... give you wind burn and make walking into the current a struggle.... but not an actual storm in the grand scheme of things.

Our updates are many right now.

Simon's hitch in his giddy up has gotten ... well... hitchier.  That is my PT technical word that i created today. His leg length difference has continued to increase, so we are going to find out why.  Heading to ortho tomorrow for xrays and consultation.  I took the liberty to schedule him an orthotics appnt right afterward because i'm assuming he's going to need an "outside of the shoe" lift. His leg length difference is too much to use an "in the shoe" lift.  I'm looking forward to getting this taken care of for him...and also wondering what the cause of it might be.

Both the boys have been accepted to the Cincinnati bowel and bladder management clinic.  We will likely be heading there in the fall for about a week.  We will consult with the top urologists and GI docs in the country, and very likely will be discussing surgical options for shea at least.  More info to come... in a vague kind of way.  ( not really dinner time reading on that one!)

I asked for and was granted an endocrinology referral for shea.  Shea's growth plates are closing at an age appropriate rate, but his size and physical growth rate is way behind and way slow.  ( we use arm span measures on him, bc we know his legs will always be on the short side )  If these trends continue, and his growth plates close in the teen years, with his physical growth and size way behind... he will be very small for an adult...which can come with issues.  As it is, we are already seeing that one kidney hasn't grown in the last year.  It looks as though we will need to start growth hormone injections in the near future.  ( a daily treatment, and shea HATES needles... we have not mentioned this to him yet )  The tricky part is that he doesn't fall neatly in the main categories that insurance deems appropriate for approving funding.  I'm told that these treatments cost big bucks, so we will be spending time finding out how to convince insurance to approve this for him.

Danielle heads to camp on Sunday.  It's always a great time for her.  I'm so excited that she has this chance to have girlfriends!  My prayer for danielle this year is that she can find a good friend her age to be buddies's been a struggle for us sometimes.  Danielle and mommy are also scheduled to go to Vermont the last weekend of July.  It's the triennial 9p- / alfi's syndrome reunion.  We've never been to one and i'm really looking forward to it.  I have had so much support and friendship through the down syndrome network, GRSBA, Mops group etc for the other kiddos.  Danielle's diagnosis is so rare that there are only 2 other cases in the whole state... so we don't exactly get together for coffee!  She will also get a chance to contribute to research about her rare syndrome, as a genetics team will be there for the weekend with all of the families, and will interview parents and examine the kids in order to gather more information about her diagnosis.  It will be great for danielle and I.  I do wonder how a hotel full of "Danielles" is going to fly... but hey i'm up for an adventure.  Another prayer request would be that none of my current health issues would prevent me from taking her on this trip, I am a bit nervous about this.  Maybe I can teach her to drive between now and then... hmmm  Also on the danielle front, her stomach is much better. With the new gastroparesis meds, she is not 100%, but better for certain.  We ahve also greatly reduced her ADHD and mood stability meds and she is handling it well, even at school.  I'm very happy about that.

Dan has had a very very full few months of ministry at Manchester.  Many significant and unexpected events have unfolded in a short amount of time.  It's been a learning curve for hubby, and the family.  I'm so proud of him, and the people he's touched through this.  He is a bit stretched lately...and could use a good chunk of sleep filled nights and refreshment... xoxo

As for emily, everything is fairly normal with our gal.  She is going through some terrible 2's / almost 3 spurts for sure.  Overall though she is a happy, healthy, entertaining bundle of energy.  She loves her mom and dad terribly and I surely don't tire of that :)

As for me... it's been a tricky few months, and especially a tricky july in regards to my cardiac issues.  I'm hoping that this newest treatment strategy will help.  Hope is a good thing for sure!!.... although i sure am tired of being tired.  My 90 year old patients are at times kicking my butt at work....i try not to let on though :) Prayers for healing and successful treatment would be greatly appreciated.  To sum it up in one sentence: my blood pressure is consistently too low, and my hearts base rate is constantly fluctuating with irregular rhythms and pvc's thrown in as well.  AKA... my body always feels whooped with small amounts of physical exertion.

I could go on with the various updates, but those are the more significant tid bits.  We would love your prayers, and in the scheme of things know that it will all settle down a bit "someday".  At least that is what we tell ourselves right?!

Summer has brought fun, and friends, and we are so happy to be outside.  I love letting the kids play in the rain, and romp out back....  we are as always counting our blessings... while holding onto our hats.  Til next time...