Endocrinologist Visit #1

Asher had his first, of what will probably be many, visits to the endocrinologist.   The visit was informative- many of the more severe outcomes/issues associated with Asher's genetic disorder, were ruled out.  More bloodwork and a urine test were ordered- these results will help us better pinpoint what key issues we really need to tackle and what therapies/hormones he will need.  It is exciting to know we are one step closer to knowing more about what is going on inside Asher and how to best help him!

2 Super Heros walking in...

Busy with chalk- they love how these doctors offices are geared to kids!

Cutest little patient!

Looking at pictures- he did great!

Asher did great during all his bloodwork- and now we wait for answers...

Eye and Surgery Update

Asher met with the ophthalmologist for his re-check.  The measurements were consistent and surgery was scheduled!  

It was amazing.  3 doctors all rearranged their schedules so that Asher would only need to be put under once.  These 3 doctors will tag-team and together, complete all 3 surgeries that he needs!  How amazing is that?  We are humbled by their compassion and desire to do what is best for Asher!

March 6th will be a big day- adenoids shaved, frenulum clipped,  private parts fixed, and eye muscles tweaked.  Whew!  Thank goodness the other 3 kids will be in school so the day can be dedicated to helping Asher heal.  According to the Dr's and the literature we have been given, he should be feeling like his old self in a few days!  

We are excited to be so loved and taken care of by these doctors.  Together we will help Asher begin to be the best that he can be!

Examining the eye chart

Annalise has been a good helper- and excited that these appointments are NOT for her!

Family Bonding

We are slowly starting to fall into our groove as a family of 6.  Here are some pictures that show how the 4 kids are really starting to connect and blend.

Asher and Adeline doing homework together

Popcorn and Movie Time- watching Little Mermaid

Yummy breakfast on a Snow Day

Hungry boys!

Sledding with friends!

King of the Broom

Puzzle Time!

Tower Building- with a zebra on top

Annalise and her pal, Avery

Siblings and Jack enjoy a little break in sledding

Girls and their Valentines!

The boys LOVED their Valentine chocolate

Asher cheering Alden at his swim meet

Annalise cheering for Adeline

My 4 loves!

Annalise's Surgery #1

Annalise was a complete and totally trooper during her first surgery!  She marched off with Al the morning of her surgery and was sweet and pleasant the entire time!  The staff remarked to Al at how surprised they were at how sweet and compliant she was during the entire procedure.  She has her adenoids removed and a tube put in her right ear.  The adenoid removal is to hopefully help with her sleep apnea and the tube was to hopefully help her poor ear recover from the untreated ear infections. The Doctor is hopeful that the tube will help but realistically is doubtful.  When we go back in 2 weeks, her hearing will be retested and a CT scan will be taken to see if the cysts in her inner ear have subsided.  If things have not changed in her ear, we will be referred to a specialist who focuses on ear drum reconstruction.  Until then, here are some great pictures of our sweet girl!

Waiting- so beautiful!

All ready for surgery- notice the dot on her nose and there are drawings on her right ear, too

A little drugged...

With-it enough to hold her 2nd popsicle and her new little stuffed puppy!

Septo-optic Dysplasia

Wednesday, just 24 hours after his MRI, we were able to meet with a neurologist at our local Children's Hospital- how amazingly fast is that?  We were able to get what we are hopeful, is an accurate diagnosis for Asher.  He has septo-optic dysplasia.  Sounds scary, and it most certainly could be, but in his case, it appears to be best-case-scenario.  Both he and Annalise have been cleared of FASD (fetal alcohol syndrome disorder)- which we are surprised and thrilled by.  We are guessing the fact that their birth mother had been in jail right up to her getting pregnant may be the reason.  Regardless, we are beyond thrilled to be able to cross that "issue" off our list.

What is septo-optic dysplasia?  In a nutshell it's a genetic disorder that affects 3 areas: 1)optic nerves (vision), 2)abnormal development of the brain (academic and physical delays) and 3)pituitary issues (being short).  In only about 30% of the cases do people have "issues" all 3 areas- Asher is part of this select group.  One of the symptoms of this disorder is constant thirst- which he has! We are thankful for an explanation other than diabetes.  He will be developmentally delayed/challenged and need lots of help academically.  He may need growth hormone therapy to grow.  His vision will typically be poor.

What can we do about it? Right now, nothing.  We meet with an endocrinologist the beginning of March and he will help us determine what kinds of hormone therapies Asher will need.  Physical and occupational therapies are going to start in the next few weeks- the paperwork to get him evaluated has already been submitted.  Next week he sees the ophthalmologist for his re-check, and this diagnosis will be a big part of our discussion.  Thankfully it seems that his eye condition does not typically degenerate, so there is hope that we may be able to improve his vision with surgery or glasses.

When the neurologist observed Asher, she was astonished at how high functioning he is- how he can run and jump, wants to look at pictures on our phones, how quickly he is learning English, and that he is on the cusp of being potty trained.  He seems to be on the less-affected side of this disorder.

It may seem scary- but we are thankful for answers.  

We are thankful that this is a diagnosis that gives Asher hope of a future- with help, but a future none the less!  

We are thankful that God thinks we are smart enough to learn all about this disorder!

It certainly seems that our family is a good fit for him! 

Once again, God's plan is clearly amazing!

After having his blood pressure taken- notice the cowboy boots he's rocking?

The Children's Hospital has the best waiting rooms!

Charming the receptionists.... 

All done- running around while we waited for our van

They both did super!

MRIs

We knew that the twins had questionable "things" going on with their brains- and the only way to know if these diagnosis' were correct was to have MRIs done.  The twins did great- the hardest thing was not eating or drinking in the morning!  My mom and her husband came in town to help us- and they took Adeline and Alden out to breakfast at Dunkin Donuts.  Annalise had to be there at 8am and Asher at 9am.  Thankfully Al and I were able to tag-team and were able to even see each other for a few min between.

Playing with my glasses in Registration

Deck of cards- best.toy.ever!

All Done

Waking up- happy to drink juice!

Daddy had to hold her head as she was a bit like a Bobble Head...

Asher being changed to the bed for the MRI

All ready to go! 

More "with it" able to get her thumb in!

So sleepy...

Loving his juice!

He didn't want to sleep when he got home- some lunch and 101 Dalmatians- then a good nap

After a 2hr nap, she woke-up happy!

We got the results a few hours later- amazing!  Annalise is totally normal- not even FASD!  Asher's is a bit more confusing, so we have been sent to a neurologist.  Stay tuned!

Medical Update

We have been super busy visiting all kinds of doctors- and the twins have been beyond amazing!  The final doctors from Round #1 were our pediatrician and cardiologist.  Each children did well- breathing as they were told, giggled as they were poked and prodded, and very  few tears were shed as 7 vials of blood were taken!  MRIs were scheduled for the next week.  Hopefully soon we will have most of the puzzle pieces to put together 1)what issues they reallllly have and 2)what the path is that we need to take to help them be the best that they can possibly be!  It really is amazing that so much of what they "need" is simple and yet will dramatically impact their quality of life!

We are so blessed by these 2 spunky kiddos who continue to just fit in with our family!

Eyes, Ears, Nose and Mouth- Head and Shoulders, Knees and Toes!

The Marathon of Drs Visits is what we are affectionally calling this week.  We knew going into this adoption, that the twins would have plenty of medical "issues" both revealed in their medical paperwork, as well as those that we would discover as various specialists looked them over.

That is proven to be exactly true this week- and we aren't even done with the medical appointments/procedures!  What's really sad is that most of these could of/should of, been taken care of years ago.  IF they had, the twins would be experiencing a vastly different toddler-hood.  But, that is why God brought them to us- so we could be a part of this medical journey.  That we could be the catalyst to help them heal, see, hear, the way normal kids do!  What a privilege!  What a joy!  {on a side, note, if you want to contribute to their medical co-pays, feel free to send money!}

Here is what you really want- pictures!!  Annalises' glasses came in super fast- we ordered them Monday and they arrived Thursday!!  When we put them on her, she "Ohhhed" and "Ahhhhed"- her eyes shining.  Potentially, for the first time in her life, she was NOT experiencing double-vision!  The Dr warned that it may take her time to get used to wearing them... Nope. Not Annalise!  Once we put them on, she has basically not wanted to take them off!  She is SO happy with them on!  I hope it's that she can finally see- but it could very well be that she has a new accessory that she loves!

Beautiful girl and her glasses- and a smoothie that she LOVED!

Sorry, there are no pictures of this- but they did go to our local elementary school and had speech evaluations!  Annalise rocked it- the therapist was floored at how much she understood!  She did also showcase her speech- and lack of key sounds.  Asher failed with flying colors- as we knew he would. We just aren't sure if his delay is purely intellectual or a result of being allowed to basically do whatever he wanted (i.e. not pushed or exposed to anything really academic) for the last 4.5 years.  We will continue to have them both tested so we have a better understanding of where their strengths and weaknesses lie.  It is a long process- and we won't have any definitive answers for 3-4months.

Next up- ears!  In Lithuania, the international doctor told us that she couldn't see in Annalise's ear and that she needed to see an ENT.  When Annalise was seen by our pediatrician, she even said her ear was so bad that she needed the ENT.  So, off to the ENT we went!

We love this ENT.  This is the ENT that took out Addie's tonsils and has helped us repair Alden's nose after a different ENT wrecked it.  This ENT takes off every July and does medical mission work.  I love them.

We started off with just a hearing test- but both twins each had 1 ear so clogged with wax that they needed to have it removed before the hearing test.  To make a long story short, we ended up seeing the Nurse Practioner, the doctor and a team of other nurses.  Annalises' ear is far worse- it took the entire team to clear her ear of wax it was that compacted.  She cried, but was a real trouper!  In the end, the doctor determined that she has a retracted ear drum- probably from recurrent, untreated ear infections.  She is going to have surgery on Valentine's Day to put a tube in that ear- and hope that her ear drums pops back.  If it doesn't, she will have to have her ear drum reconstructed.  She will also have her adenoids removed- she has sleep apnea.  Poor, sweet girl!

Asher's ENT appointment was far less dramatic.  His ear was easily cleaned out and he passed his hearing test with flying colors!  He does have crazy-huge tonsils, which will be coming out, just not right away- probably this summer (yay....).  He will have surgery to fix his tongue and remove his adenoids- to help with his monster snoring.  He was such a trouper, too!

It is amazing how they both seem to understand just about everything that is spoken to them in English!  God has certainly gifted them with quick minds!!

Last appointment of this post- the dentist!!  They both were a little leary- which was totally understandable given their ENT visit the day before (the visit was 2.5 hrs long!).  It was sweet that they both wanted to hold either my hand or their Daddy's hand.  They may not have been happy, but they obeyed and in the end, were smiling and cavity free (which shocked us!!).

We are so blessed to have these 2 in our lives!  We are excited to see what God has inshore for them!