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!
