Saturday, August 29, 2015

Patience in the Journey . . . . .Moving Forward

Anna was more than ready to go back to school on the first day (this past Monday).  She seems to have adjusted well to interacting with her friends and other people with her mouth banded shut. She began taking Methotrexate again last Sunday, and she had her first post-surgery Remicade infusion this past Friday.  One little hitch in the journey has been her labwork, showing some slight abnormalities.  Although it's not at a point where it's a major concern, we have been brainstorming this morning on how to add more iron to Anna's food intake.  Her doctor's suggestion has been to use iron-fortified baby cereal, and we may, indeed try that.  For today, she started adding spinach into some of the foods she purees together.  Anna's thought is, "Let's wait until Tuesday" before we go out and purchase more iron-rich foods.  (We do have some of those "green" juices at home, which she began drinking today.)  Tuesday is the day we head back to the Lancaster Cleft Palate Clinic, where we will get an idea of when the bands can come off.

In the meantime, Anna has been longing for some foods.  She asked for goulash the other night.  She pureed (and then strained) her share, but when I put the dish on the table for the rest of us, she sighed and said, "Oh, that looks SO good."  She's been enjoying milkshakes and ice cream and frozen yogurt, but tonight she was hungry for brownies. We got creative---knowing we had to cook the batter a little bit, because of the eggs.  So she baked the brownies for 10 minutes, then put some of it in the juicer and added milk and an Atkins liquid protein drink until it was liquefied enough to drink.  She was more than satisfied with the end result!

She began making a list on her little white board of foods that she really misses eating: chocolate chip cookies, muffins, bread, pasta, salad, brownies, pop tarts, real mashed potatoes (instead of liquefying them with more milk), a Subway meatball sub, and licking peanut butter and ice cream off the spoon!  She can't lick envelopes, either, since her tongue is trapped behind her teeth---she got her brother to help lick the envelopes of the thank you notes she was writing.

This, too, shall pass.  It's only for a little while.  We continue to be surrounded and uplifted by the prayers of so many.  Each day brings progress.  The Lord continues to go before us, guiding us, directing us, and helping us to stay positive and not wallow, and to inspire us (especially Anna) with creativity despite her current limitations.

Tuesday, August 18, 2015

The Value of the Bands (Post-Surgery Update)

Another title could have been a quote from Anna today:  "It all works out in the end.  It always does."  This after a follow-up visit to the Lancaster Cleft Palate Clinic this morning.  We ended up being there a lot longer than we thought we would be.  Last week Anna was discouraged about her teeth being banded shut, making eating a real challenge.  She was wishing she could have the bands off.  Today, she discovered the value of the bands that hold everything in place for now.

Somehow, someway, Anna's teeth had shifted.  Could have been during those first twelve hours or so after surgery, which weren't pretty or fun.  (If you are anticipating jaw surgery, you can message me or something if you really want more details.  I won't go into it here.)  That night, Anna said she felt like the bands had stretched and things had shifted.  The nurse attending to Anna did call the residents down, and they assured Anna that the bands were meant to have some "give" to them.  (She had a lot of surgical tape on at the time--I'm not really sure how well any of us really saw Anna's teeth with the restrictions of the tape.) Bottom line is that for the past week, Anna's teeth have been bound in such a way that the lower teeth were not centered, and they were protruding slightly in front of the upper teeth.  I wasn't sure that was right, but figured that the orthodontist would never let Anna's teeth like that and would fix the issue before we are totally done.

Herein lies the true value (what a blessing!) of working with a team of doctors which includes an orthodontist, and they schedule appointments at the Clinic and have members of the team there.

The orthodontist's assistant was the first to really take a good look at Anna's teeth.  She didn't say much, but asked some questions, and went out to talk to the doctors.  After much consultation, she came back and told Anna that she had been told to take Anna's bands off.   She said that she had never removed anyone's bands this early, but the doctors were adamant that Anna could not continue to heal from surgery with her teeth in this position.  As she gently and carefully began removing the bands, Anna was in no way prepared for the waves of extreme pain that she experienced as her teeth were loosened from their restrictions.  The bands were left off while the doctors attended to her (so very compassionate---but we were scrambling for any kind of pain relief at that point.  I had not thought to bring any--wasn't expecting to need any!--, and the office only had liquid Tyenlol for infants---we resorted to using some of that) and then they rebanded her teeth in the correct position.  That brought relief.  We stayed a little, so that the doctors were certain that Anna was okay.  They will see her again in two weeks, and decide then how much longer she needs to keep the bands on.

So even though Anna is not fond of a liquid diet, those restrictions are preferable to the pain she experienced.  (I was thinking that this is a good metaphor for life---how many of us think we want to live without any restrictions at all, not realizing that some of those restrictions are for our good?  That the mess and the pain are extreme?)

I am amazed at the difference that today's adjustments made to Anna's face on the outside.  There is still more swelling to recede, but we can really see some of the differences that this surgery has made.  Thank you for your continued prayers.  Each day has some ups and downs.

Friday, August 14, 2015

The Road Back to "Normal"

The second half of Anna's surgery was rough, according to the surgeon.  The surgery itself lasted longer than he anticipated.  He came in to see Anna several times in her hospital room, and each time, he said, "That lower jaw was tough, Anna."  The first night in the hospital was not pretty or easy.  (The nurse called the Plastic Surgery residents down to Anna's room, because she wanted some advice and clarification on when we resort to cutting the bands off.  They prescribed anti-nausea meds into the IV, and that seemed to help.  The nurse had to call some of the other nurses to help with her other patients, because Anna needed her attention for awhile.)  But we've made it through.  Her surgeon also told her, "It only gets better from here."  And it has gotten better.  The swelling has been receding slowly.  Some bruising is beginning to appear, but we expected that. 

The independent Anna we know and love is beginning to emerge again.  We watched some YouTube videos this morning from a woman who had similar surgery in 2011 (look for Sasha Maggio on YouTube).  She has posted an entire series.  We didn't watch all of them yet.  Anna has also been researching recipes for liquid diets (Boost and Ensure are rather expensive, and those baby food pouches can be, as well!).  I am decent at researching the internet, but I think Anna is even better at it.  (that younger generation!).  She's already planning some of her meals for the next few days.  We're trying to get nutrients and calories into her. 

For the past few days, Anna has had a very short list of who is allowed to see her.  (If you are close to our family, call me or message me if you want to visit and want to see if you are on the short list!)  She's thinking that beginning tomorrow, she'll be ready to see more people, and is eagerly anticipating a visit from some beloved cousins.  School begins in ten days, and she already is making plans to start seeing some school people and her guidance counselor before the first day.

We  have been truly grateful for the wonderful support system we have.  With family, church family, and many, many friends who have shown us love and support and are praying for us continually.  We have seen the truth of James 5:16b (NLT), which says, "The earnest prayer of a righteous person has great power and produces wonderful results."  We have seen these wonderful results during Anna's hospital stay and her healing process.  God never promised us that this life would be easy.  He promised, however, that He will walk with us each step of the way.  We are learning endurance and keeping our eyes on the goal, instead of the difficulty of the challenges.

Sunday, August 09, 2015

Surgery Tomorrow

Penn State Hershey Medical Center Children's Hospital

Everything is in place (insurance, doctors, schedules, eyes are currently clear of inflammation, etc.)  We'll report to "Admissions" at the Hershey Medical Center early tomorrow morning for Anna's jaw reconstruction surgery.   Friends and family have been so thoughtful and kind and caring as we've prepared mentally, spiritually, and physically.  We're spending the evening chillin' out a little.  Thanks for your prayers for Anna and for us.  (I've been reminded as we've met with various doctors that she has some of nicest, kindest medical people caring for her.  For that I am so very thankful.)