Updates

Well, HELLO readers, family and friends!  Happy New Year!!

It's already January 7th!!  You know, I am starting to find that what THEY say is true ... the older one gets, the faster time goes by!  I didn't get Christmas cards sent out and I've been working on a letter to send out with New Years cards, though that doesn't seem to be happening either so I am making the effort to do this post!  I just hate that time does not wait for all the things I have wanted to say but haven't had the time to get out.  But I guess that means that I should be very thankful ... and I am to be sure ... because I have so much to and so many that are keeping me quite occupied.

This year will likely be 'no exception' as we have already begun new tasks and the onset of planning for new adventures.  As you may recall, we have been looking for the next steps to take with regards to Rees and his medical situation.  Because his nasal defect and cleft were greatly as a result of (or at least aggravated by) the hamartoma/hamartomatous tissue (both in his bone and surrounding tissue), his surgeries have been problematic and inhibited by complications and getting him a nose is not as simple as finding someone really good at nasal reconstruction.  To correct it will likely be at least three surgeries and the problem with doing this type of constructive surgery is that there are too many unknowns right now.  

Rees has lots of growing to do and he could very likely end up with a nose that is too small or too large for his face.  And then, if we find that the tumor continues to grow, then all that work to construct him a nose will very likely have been for nothing because it could essentially damage or destroy the construction.  Our former surgeon is the surgeon who performed all of his surgeries and knows the complexity of his case better than anyone.  We were very confident of his abilities and the plan that he had outlined for Rees.  Rees’ numerous complications prevented the surgeon from achieving all of the steps he outlined but we have found a doctor (craniofacial / plastic surgeon) who is comfortable with continuing the plan that was started for Rees, which is to essentially play out over the next ten years.  We will be travelling to Oklahoma next month to meet this surgeon and to discuss Rees' case.  This is a BIG step for us with the doctor being so far away but we believe that we should go to meet him, ... and take it a step at a time.  We have sought God's guidance and provision and He has certainly opened the doors to this opportunity ... 

Simultaneously, our latest endeavor has recently begun and it is a real humdinger!  Truly, I continue to be stretched by my little handful of blessings.  Seriously, though ... our Brynn has struggled academically ... always really ... and it just gets to be more of a challenge with each passing year, which carries over to problems with daily functioning as well.  We have really reached our wits end with how to help her and after hearing the promotions for Learning Rx on the radio numerous times, we finally decided to give them a call.

LearningRx trains the cognitive skills the brain uses to think, learn, and read.  I really hesitate to share this because ... well, for as many positive comments and reviews I can receive, I can equally obtain or find the same with negativity.  It is crazy expensive and sort of feels like gambling, (who wants to do that when referring to his or her child), ... but we'd rather lose the money than the child.  It also requires a rigorous routine of "brain training" five times per week.  She receives one-on-one training at the center, which is 80+ miles round trip, as well as at home ... by me ...  Ahem ... !!!  That means I have to train as well so that I can be an effective trainer at home.  That also means that Baba has to step-it-up more too, especially since we're still working on getting Jonah and Rees up to speed on so many things.  Committing to the Learning Rx program is gonna be a DOOZY of an experience but in the end, we are hoping there will be plenty of "positive" to be thankful for, even if Brynn continues to struggle in school.  Time will tell ... PRAY for US!!!

We seem to have taken some steps backward with Jonah and his speech.  It was definitely a detriment when we found that our insurance wouldn’t authorize any more speech visits last August due to the annual cap they have.  Thankfully, Jonah receives speech therapy in school several times a week but we are also seeing a change in his jaw structure, which we believe is attributing to some of the loss of speech ability.  He has grown A LOT, especially in the last year.  That IS really good … however, his face is growing but his lower jaw is not.  The orthodontist now says, “well, that was to be expected.”  But we need to start documenting, I believe, to show that it is affecting his ability to speak.  We continue to work with him at home to encourage him to speak slowly and think about the sounds of the words as he is speaking them.  

And this girl ... 

 

... well, as you can see, she is growing up WAY TOO FAST!!  She is practically driving us everywhere in preparation to take her driver's license test.  It's super CRAZY that we are making graduation and college plans ... it's just a little more than two years away!

UNREAL!! But what a blessing it has been to watch her grow.

Happy New Year from all of us!!  

We wish you a year of beautiful experiences full of love, and faith, and hope!

  

Hello friends!  Hope your Thanksgiving was full of family, fun, and festivities.  We have had a very nice couple of days off work and school and have very much enjoyed the family-time. 

As you may recall, Rees was recently diagnosed with von Willebrands disease, a blood disorder that affects the clotting of his blood.  Fortunately, the disorder does not seem to negatively affect his normal day-to-day activities.  Though, he does now have recommended restrictions as to the activities he should and should not participate in.  He shouldn't pursue a career in football, wrestling, soccer, ... high contact sports and similar activities.  Because of his craniofacial issues, we had planned to steer him away from those activities anyway.  The only reason we realized there was likely a problem with his blood is because of the number and extensiveness of the surgeries that Rees has had.  So, in one sense, we are fortunate that Rees has this type of blood disorder, if he has to have one, I suppose.  The plan is that when Rees has a surgery that he would receive an injection of a medicine that induces the release of von Willebrand factor (of which Rees is deficient) from its storage sites in endothelial cells.  I don't completely understand it but basically with the medicine in his system, Rees should clot faster, preventing him to have excessive blood loss as has happened so many times before.  

If you remember, Rees had to go to the hospital for a trial injection of the medicine to determine if it will actually work for him.  This medicine is commonly given via a nasal spray, however, due to Rees' facial anatomy, we opted for confidence and had the medicine injected intravenously.  

So, here's the deal ... without medication, Rees' von Willebrand factor is at 30%.  At the first blood draw, his factor was at 68%.  That IS a significant increase, however, it really should be near 100% for craniofacial surgeries.  After an hour, his level dropped to 54%, which shows that Rees' body cleared some of the medication.  The way I understand it, these results are not optimal; Rees did not respond to the medication as well as was hoped.  This will mean that other measures need to be considered for Rees' future surgeries.  At this point, we don't know what those measures might be.

The other thing that recently happened is that we were referred by a very reliable and knowledgeable source to have a consultation with a plastic surgeon in Chicago, one who is very well-known and highly regarded for complex nasal reconstructions.  The appointment was very last-minute but since the kids were off school for the Thanksgiving break, we decided to try to make a day of it, instead of leaving them home.  

We had a great visit in busy-bustling-blustery Chicago!!  

I don't know what this giant-silver-jelly-bean-looking thing is ... BUT ISN'T IT something?  It's near Millennium Park and is quite the attraction. 

This is the view from underneath it, looking up.  Wow!!

There is definitely SO MUCH to see and do in Chicago.  Of course, we've been there before, but on this day, everything we saw was NEW to us.  That was a treat!

There's an outdoor German Christmas market called Christkindlemarket down in 'I-forget' which square but it is really quite something.  There is German food and fare and you can find LOADS of Christmas treasures all authentically German-made and German-inspired.  Beware, though, many items are quite pricey in response to the very intricate and detailed craftsmanship.  

After walking around for a while, we found this UH-MAZING tea shop!

Argo Tea ... what a great place.  It's so great because it is exclusively a tea shop ... not a drop of coffee ... HALLELUIA!!!

It was perfect after being outside in the cold ...

Would you believe ... this place is ONLY in the Chicago-area?  There are about ten locations but ONLY in the Chicago-area.  Ahhh ... well ... more reason to travel south of our border.

And this little dude ... 

The afternoon brought us to the reason we went to Chicago  ...  the consultation with the Plastic Surgeon.  Rees was very brave and very matter-of-fact ... 

... he knows the drill and new-and-strange-doctor or not ... he was ready!!  PROUD MOMENT for sure!!

(I mean, ... look at those photos.)

Nothing has been decided but the visit went well and we learned even more about what Rees would require surgically.  I brought my trusty binder with me and was able to provide the doctor with loads of information, as well as surgery notes and his scans. 

The doctor left the room to go review the scans and came back a while later.  He was impressed with what our former surgeon was able to do inter-cranially.  And then he told us that Rees has no "lining".  There is medical terminology for the various layers of tissue, however, I don't quite understand them and he used the word "lining" to help us understand that is what he needs first.  Giving Rees a nose will not be a one-and-done surgical process.  It will likely be three surgeries.  The first surgery would be to create "lining" for him and this would likely be done by taking skin/tissue from his wrist area and grafting it to his nasal area.  The second surgery would be to provide nasal support via cartilage grafts and other supporting tissue.  The third surgery would be via a forehead flap that would create the outer layer of the nose.  The whole thing makes us nervous but he explained it in a way that indicated his expertise and confidence in the process.  He also mentioned the space between Rees' eyes and inquired as to whether or not we were going to have more surgery for that.  We said that we were looking into it but hadn't decided anything since the retirement of our former surgeon.  He said that he wanted us to have a craniofacial surgeon designated because he would not want to move forward with the nasal reconstruction until a plan is set with and he is cleared by a craniofacial surgeon.  

We told him that presented a problem for us as we have been undecided and troubled by finding a surgeon for Rees.  We asked if he knew any ... and he said FOR SURE he did.  I know, ... our question probably sounded odd.  So, there are a couple of surgeons in the Chicago-area (he said he knows others further away but that these are a good place to start).  He is going to contact and share with them the information about Rees.  He took several photos and will prepare a tentative plan and discuss with the other surgeons.  

So, I guess that's where we're at.  We are thankful for options ... even though we're not used to it.  We're thankful that Rees is in a good place and nothing is an emergency at this point.  We're thankful for the great day we had in Chicago and that our kids were troopers and had fun mostly with just walking around.  There is so much to be thankful for and we hope you all do too!  

Happy Thanksgiving from us to you!!    

The Adoptiversary!!

We've just celebrated the 2nd Adoptiversary of Jonah and Rees!

What a difference in SO MANY WAYS! 

Two years ... it's such a short amount of time and yet, it seems like's it been longer than that, especially since SO MUCH has happened since these dumplings joined our family.

Jonah and Rees have grown SO MUCH and have gone through SO MANY changes, physically, emotionally, and intellectually!  The transformation is nothing short of amazing!

It's been a wild, crazy ride, one that I have admittedly wanted off of a time a two ... But undoubtedly an adventure orchestrated by God and I thank HIM that He's kept me in my seat!

So, we watched a movie and they chose Penguins of Madagascar.  Not what I would have picked ... LOL! ... but I was just thankful for the comfy-family-bonding time *and to get off my feet*!  The best line of the movie, (that I'm going to try hard to remember so I could use it on one of my dumplings - I just know the opportunity will arise) ... "Whoa! Down-back the moxy, sas-mouth!"

Gah!!  I love it!!

Rees has just been diagnosed with Von Willebrand's disease, a blood disorder that affects how the blood clots.  This is likely the culprit for all the issues with excessive blood loss during his surgeries.  So, we were at the hospital the other day testing out a medicine that can be given prior to surgeries to help his blood adhesion and clotting factors.  We had to get stuck twice ... *OUCH* ... (and when I say "we", of course I mean HE). But, hey, it's hard on mama too.

All was well when he was brought food, toys, and the remote for the television!  The best thing to Rees about going to the hospital is getting to watch nearly unlimited Disney Jr. and Nickelodeon Jr. Stations and playing on the iPads.  

The medicine was administered intravenously, and then at the one hour and two hour marks after the medication was in his system, blood was drawn so his factor levels could be evaluated.   Now we wait ... for about a week, until the results come back.  Hopefully, the results will show that he responded appropriately to the medicine.  If he does, this medication will be administered prior to surgeries to prevent all the bleeding issues.

Never a dull moment ... that's for sure!  But we are thankful for the answer to this problem and hopeful for the solution ... God is good and Rees is doing well with all of his healing and growing these last few months.  

Always something to be thankful for ...

It’s been about three months since I posted anything relating to medical issues with our kids.  Can it be?  Has it really been that long? Doesn’t seem possible, does it??

Well, we’re all hanging in there and nothing major has occurred.  Summer went by quickly and now we’re back in the swing of the school routine.  Jonah is back to getting speech therapy three times a week as well as assistance with certain tasks related to speech and language comprehension.  This is good and will hopefully continue to reinforce his need for ongoing articulation practice with his sounds.  Later next week, he will see the Speech Doctor, who will conduct a few tests and perform a nasal endoscopy to assess his velopharyngeal insufficiency.  BIG WORDS!  But it will basically help us determine if he needs further corrective surgery, as well as help create a platform for which to request from the insurance company that we not have an annual cap on therapy sessions.

As you may recall, in early July, I posted that we had a follow-up appointment with a surgeon we were considering taking over Rees’ care after the retirement of our previous surgeon.  The result of that appointment led us to consider what other options we might have or if there even were any.  In early August, we sent out a mass communication to various plastic surgeons and craniofacial clinics across the USA.  As I had said in a previous post, we did actually receive responses from various locations/doctors.  Additionally, we also found that we could request an online 2^nd opinion from an expert at a very highly esteemed Children’s Hospital.  This piqued our interest so we looked into it.  We also looked into the hospital, the doctors (experts), etc … we were very impressed and excited at the thought of obtaining an opinion from a location with such experience and prestigious accolades.  In order to request an “opinion”, we had to pay $650 up front!  YIKES!  We were hesitant at first but based on the information that we had and our desire for a particular doctor’s opinion, we went for it.  The process is initiated by a Third Party and we had to complete a questionnaire to initiate the process.  We provided very detailed information regarding Rees and all that he has been through, including more than a dozen photos to back up the information that we provided.  During the initial contact with the Third Party (that was actually a Staff Physician who contracts with said Third Party), we were SO IMPRESSED with the information they provided, the care and concern they showed for Rees and all that he had been through, the way that they went over EVERY DETAIL we shared with them and even asked questions to ensure they understood.  We thought, “WOW!  If the doctor who provides the ‘opinion’ is this attentive and detailed, we will be in excellent hands!”

Now, I’m sure I don’t have to tell you … if you are a consistent reader of these posts, you can easily determine that Rees has a VERY LARGE medical file.  The Third Party takes on the task of collecting ALL medical records, including diagnostic imaging, and then sorts through it to create a file that includes Clinic/Hospital notes, Procedure/Surgery notes, Imaging notes, Laboratory results, Pathology notes, and miscellaneous information.  They take it even a step further and bookmark pertinent documents and pieces of information that would be necessary for the “Expert” to generate his/her opinion.  THIS INFORMATION IS INVALUABLE AND WORTH EVERY ONE OF THOSE $650!!!  Thankfully!!

Unfortunately, the “expert opinion” was not of the same quality.  Truly, we were very disappointed to find that the doctor who we thought was going to be our next “GO-TO” … likely will NOT be.  Here’s why: 1) Rees’ given diagnosis that we have up to this point was not defined and explained as we were told it would be.  Rather, a generic, most likely scripted and very short two sentences was provided.  It was very impersonal as it did not seem to even relate to Rees’ condition.  2) Specific responses to our specific questions were evaded; we did not actually get any concrete answers.  3) This doctor seemed to suggest that Rees’ situation has not been the result of the diagnosis we were given, which is fine in itself, however, there was not substantial or corroborative information to support this statement.  4) The responses seemed to suggest that the doctor did NOT review ALL of the information that was presented.   There’s nothing I’d like more than to pick up the phone and call our former surgeon and say, “hey, what do you think of this?” … but that doesn’t seem very appropriate for me to do.  I mean, he DID retire after all … I probably should let him, right?

Now, all that being said, it was not a total loss.  As I said, the administrative portion of this process was absolutely outstanding so, to make use of the work that was done, I printed out the documents that were compiled and sorted them into a binder in the same way that they were organized for the “Expert”.  I even printed screen-snips of several of the CT images. 

I’ve begun going through the documents, highlighting terms I’m not familiar with, underlining phrases, looking things up for clarification … it’s all very interesting to me and it’s also important to me that I have the best understanding possible for what Rees does or does not need, has or does not have.  I can’t help but shake my head as through all of the documentation I re-live Rees’ medical ordeal of the last year.

Another very interesting discovery related to this process is that in order to receive the “2^nd Opinion” from the “Expert”, we have to select a doctor who will also receive the report.  What we didn’t realize, however, is that in order for US to receive the report, the doctor whom we selected to also receive the report MUST sign a release for it first.  We were not aware of this little tidbit but wouldn’t have expected it to be a problem.  Since our former surgeon was no longer available, we listed the doctor who we saw for Rees’ last surgical follow-up.  However, this doctor REFUSED to provide his signature to receive the copy of the “2^nd Opinion”.  Well, … THAT WAS DISAPPOINTING!!!  We were still able to obtain the report after providing the information for our family doctor who was quite willing to sign for the report.  With this in mind, it was revealing for us to find within the medical documentation the notes that the REFUSING surgeon had dictated at the follow-up visit we had with him. 

ONE THING I HAVE LEARNED TO BE TRUE, based on the documented notes from the various doctors involved with Rees’ care, … they do not tell you EVERYTHING that ends up in their dictations.  

One of the main reasons we pursued looking for other doctors was because during that surgical follow-up appointment, while the surgeon was very friendly, knowledgeable, and experienced, we felt that he was not completely comfortable with the next steps for Rees.  We understood that his scope of care was limited.  Instead of having three different surgeons complete three different surgeries, we prefer to have one doctor capable of handling as much as possible.  Now, we have found from his notes that he is concerned about the viability of the procedure that he touted as the one he has performed numerous times and as being the best route for constructing a nose for Rees.

What we do agree with that was noted in the “expert opinion” and previously understood from our former surgeon and the follow-up surgeon, as well as a kind and informative email response from one of the craniofacial centers that responded to our inquiries is that … Rees needs to heal.  His body needs time to recover and replenish after all that he’s been through.  It will likely be a year from his surgery this past May before he has another surgery and, at that point, it might only be to remove the hardware holding his skull together. 

We are uncertain of the next steps and the words of our former surgeon echo in my mind, ...“he may never have a nose like you and I do.”  But I do know that what Rees needs, … the best that we can do for him … is to be patient, to be diligent in our advocacy for him, and to continue to be his loving, caring, compassionate, eyes-wide-open family.  Sometimes, that is super easy in theory … I’m his Mama and I love him and I don’t even see what makes others gasp.

But sometimes this is difficult to accept as other words and expressions continue to accumulate and linger in my mind …

… the little boy in the post office who says, “Mommy, look at that boy!  He has a funny nose!”

… the teenage boy who took out his phone, continuing to make obvious attempts at getting a photo during a school program.

… the children playing in the water nearby, their audible gasp and then look of shock, as they stare while whispering amongst themselves.

While we wait for him to heal, we have other considerations that we are pursuing.  Both he and Jonah will have a consultation with Urology next week.  Neither of them have been circumcised and due to all the surgeries that they started so quickly after arriving in the USA and their surgeon refusing to allow circumcision simultaneous to another procedure, it just wasn’t something that had priority.  However, even though this is really 'late in the game' we do feel that with all that they have going on, this is a “difference” we do not want them to have to deal with.  A couple weeks after that, Rees will have another consultation, ... with Hematology.   Due to excessive blood loss during surgical procedures and the blood reactions he has encountered on several occasions, it was noted by our former surgeon that he should be evaluated.  We think that is probably a good idea and enough time has (potentially) lapsed since his last surgery to allow us to begin looking into this.

Beyond that, in January, we will also have a “Full Craniofacial Team” consultation with a different health system.  The team there received the letter we sent out this summer and they are very eager to meet Jonah and Rees.  We are interested in hearing what they have to say (but in no way committing to receive care there until we have evaluated all our options) and how they will do their assessment, which will be done in a 4-hour appointment.  Eek!!   One of the things that intrigued us right off the bat is that their “Full Craniofacial Team” consists of two Plastic Surgeons, a Neurosurgeon, ENT, Speech and Audiology.  In discussing and scheduling this appointment, reference was made like this: “oh, I’m sure you’re used to this with all your kids where you were previously cared for …”  Uhm, … no, no we’re not.  I can tell you that in the ten years that we had care for all our dumplings, we NEVER saw our plastic surgeon with our neurosurgeon AT THE SAME TIME!  Speech was a referral and done at a completely different location.  And we never saw ENT or Audiology … EVER.  So, will this be overkill??  It will definitely be different … but not necessarily wrong … and maybe different will be good!  I guess we’ll find out.     

In the meantime, we are enjoying Fall and all that it brings.  We love pumpkins and mums and the changing leaves.  Happy Fall Y'all!!!

School has been under way for nearly a month now and we're now in a pretty good routine.  THANKFULLY!!!

Rees' teacher this year happens to be the same teacher that Jonah had last year.  She is AWESOME at taking pictures of the students several times a week.  And she always makes sure she gets ALL the students.  This is really not necessary and I realize that it takes an extra effort of the part of a teacher who does this ... BUT ... it IS REALLY NICE!!!

It's just great to be able to get a glimpse of our child's school day and the work he's doing.

With Project Lead The Way, they do a lot of hands-on activities.  This really seems to get the kids engaged and amplifies their interest and learning capabilities.

Each year, the elementary school holds a Walk-A-Thon.

All the classes participate!

This is Rees' 1st Grade Class.

The kids get a strand of special beads ... one for each lap they complete.

This is Jonah's 2nd Grade Class.  His teacher this year does not take all the photos like the teacher from last year but another parent took these photos ... how nice!!

Back-To-School - 2017-2018 School Year

The first week back to school for the 2017-2018 school year is complete.  

WE MADE IT!!!

To be honest, the first week back to school is always a little tough.  No matter how much we prepare, there's still an adjustment to actually making the transition.  

BUT.WE.MADE.IT!!

All our dumplings, for the most part, had a great first week.  

Our Mollybug started 10th grade.  

I guess now that she is a sophmore in high school we're not really supposed to call her our Mollybug but ... oh well, ... it's my post ... I will if I want to!  LOL!!

Molly dove in to her first week with very full days right away ... school all day, volleyball practice/games until 8:00 - 8:30pm and then homework/studying with her bestie until 10:30 - 11:00pm.  Yikes!!  It's only the first week!!

Brynn started 6th Grade ... her first year as a Middle-School-er!!!

She actually had a really great week ... woke up excited each morning and came home in a good mood!!  This is a VERY welcome change!  I think it is going to make a tremendous difference for her and us this year with her being in her own school without an older or younger sibling being there too.  

Jonah and Rees had a pretty good week ... but I think they prefer summer vacation.  It's pretty sweet having all those days off of school but they're good boys ... they'll get back into the swing of things!

Rees is in 1st grade this year and Jonah is in 2nd grade.

It's really nice when teachers take photos during the school day ... we never had this when our big kids were in school!!

Well, here's to a great second week ... you all have a great week too, okay??