Not Feeling Well, but What A Difference

Watching my brother Elijah wrestle at his camp.

Sitting with Momma at the wrestling match.

 

 

Still working to keep my mouth closed.

Faith has not been feeling well all week long.  She has thrown up quite a bit this week from some virus that her sister Hope has also had.  Now she is fighting off a bunch of mucus again which will cause her to throw up when she can't cough it all the way out.  Even with this sickness, she is doing well.  We were just talking about how this sickness would have taken her downhill fast a few months ago.  In fact, we would be in the PICU right now, but she is doing so well fighting this stuff off on her own.  We are very happy to have the suction machine in the house because we are using it, but the oxygen tanks were just taken out the other day.  I love getting rid of medical equipment.  We were continuing to add and add and add equipment, but now we are getting rid of it....Hallelujah!

The Fireworks are flyingFaith

Faith loves fireworks and loud booms so off we go...

Faith watches the Rochester Hills, Michigan fireworks with her siblings.

Momma and Faith are waiting for the Grand Rapids, Michigan fireworks on July 4th.

Faith hanging out with the family at Oval Beach on Lake Michigan.

Faith tried to go into the cool waters of Lake Michigan...little too cool for her I guess.

We spent about 4 days on a little vacation to the west side (and coast) of Michigan.  Faith continues to do well with her new and improved jaw.  We still haven't start much food by mouth as we are still trying to figure out the gas and spit up problem.  It is so nice that she can enjoy more things now, and although we are careful with sickness exposure, we have not really had to be all that cautious since she is fighting off illnesses pretty well now.  You will notice her little sunglasses.  She enjoys those because her eyes are sensitive to sunlight.  If they are off, she will immediately cover both eyes with the back of her hands.  We weren't sure how she would like the beach, but she did pretty well.  We are still trying to determine Faith's wish and what we will do...so many things to consider so it is something she will enjoy.  We thought about a trip to Israel...Pool of Siloam here we come. :)

Busy time

It has been very busy especially since we have been able to work around the house and go to events with Faith doing so much better.  Let's see...We have been working on our front yard and making incredible progress, but also having some fun.  On June 21st, we saw the Emancipation Proclamation in person after Jesi waited 6 hours in line with 7 children (they did get to run around the Henry Ford Museum while she actually waited in line wit Faith).  Jesi and I got to see Ann Coulter speak last Thursday 6-7p (free event) then we hurried home to take all the kids to a magic show by 7:30pm (tickets from Rainbow Connection).  We went to a Steven Curtis Chapman concert with the kids on Sunday night (tickets from my job).  Then Jesi took the kids to a picnic for the Rainbow Connection on Tuesday morning/afternoon (free event put on by Sterling Heights fire fighters).  Crazy schedule, but lots of fun for all.

When I get some time this weekend, I will try to get the before and after photos up for Faith.

Day of Deliverance

Look...that bear was scared stiff by Faith's distractors.

Early this morning waiting for the OR time.

Mom can you hurry up and get these things off of me.

Oh the things that happen when mom and dad aren't around.

Stunned with amazement, Faith can't believe they are gone.

Left side which had to be redone a couple of times, but it's done.

A quick side profile so you can see the difference.

Today...our day of joyous celebration.  After more than 3 months (supposed to be 6 weeks), Faith's distractors were removed and she is happy as a lark (not really sure how happy larks are)...a happy little camper.  It took her a little while to get into the OR, but once there the procedure was very fast and easy with no issues.  When Jesi and I went to see her in recovery, she was awake and immediately smiled at us.  What an awesome feeling it must be for her...we quickly got to experience the ease of dressing her now...no more stretching clothing over her distractors.

Faith is now 25 lbs and 33 1/2" tall...and she would be taller with her back straightened out.  She is getting big.  Now begins the work of learning to eat by mouth again.  Oh, I should not forget.  We met a little girl beside us who had a jaw distraction a couple of years ago and you could barely tell except some small scars.  She didn't have all of the trouble, but it was nice to see how well she progressed.

A progression with pictures to recap will be coming so you can see how much different Faith looks.

There Outta Here...well not quite yet

Faith saw Dr. Green, our ENT, today.  He thought she looked better than when we quit distracting, and I would have to agree.  He said her bone had filled in nicely, and she is ready to have those crazy distracters removed (I added crazy).  Jesi forgot to take the pliers with her so he couldn't take them out in the office for us today.  Now we will have to wait for an OR to be scheduled for next Thursday. (joking about pliers)  They will gas her to knock her out so they can remove the Darth Vader distracters, but she will not need to be intubated.  What a change, well I wish I could say from a couple of weeks ago, but the change has taken 3 months now.  God is good, and His mercy endures forever.

We are happy to be off to Ohio for my niece's graduation party this weekend.  We haven't been to visit since Christmas and before that we think it was June of last year when we were down there.  It is amazing how one little girl can alter the course of the whole family.  With all of the stuff happening, we have either not been able to drive a short 2 1/2 hours to visit the family or simply not been comfortable enough with her state to make the trip even when we could have eeked out the time.

O-H...I-O...........I wanna go back, I gotta go back to O-HI-O.

Doctor Appointment Tomorrow

Well, tomorrow Faith will see the ENT to find out if the distracters can come off of her face.  I hope that we can schedule this quickly so it can be done very soon.  She seems so bothered overnight, and we hope their removal will help her sleep more easily...so we can sleep.

We will let ya know....

Heating Things Up for Memorial Day...

Does it get any cooler than this?  Thanks for the sunglasses Dianne.

Sorry to drool, but you try keeping your mouth closed with these things on your face.

Hanging with my friends at the Henry Ford village and museum.

Ok...so we have gone from a cold spring to hot summer...where did the 70s go?  We spent Memorial Day at the Henry Ford Village and Museum in Dearborn, MI with a temperature of 93 or so.  As you can see from the pictures, Faith is doing well, but still has the distracters on her jaw.  She did great today and enjoyed it along with the whole family.  It is so funny to watch people's eyes as we go around places because they look and look and look especially the children.  I could make it easy for people and tell them what it is, but it is too much fun to watch their reactions to her distracters so I usually stand silently and watch them as they watch her.