Goodbye 2011

Time to finish the rest of 2011.

November…

Playing in the leaves.

Our church had another healing service in mid November.  There was a mysterious couple there that prayed for us.  I could feel the power of God going into me when the woman touched my shoulders.  When she prayed for Will, she just thanked the Lord and commanded Will to “be still.”  I had not seen them before this service and have not seen them since.  Could they have been angels?  No healing news to report yet, but we will not give up.

We had a quiet Thanksgiving (just had my mom over), but we made enough food for an army.  James also got all the Christmas decorations out, so that was our main project of the weekend.  Yes, this was a record for us.

Here is Will checking out the Christmas tree.

December…

We had a nice Christmas.  Almost all of James’ side of the family came for the weekend.  Will was not very cooperative at getting his picture taken though.

Unless it was with his new truck.

Or with Kiki and Grandad.  This was the only picture where we caught him smiling!

We also had a quiet New Years Eve.  We didn’t have a nurse that night, so it was early to bed, since Will gets up so early.  Lately he has been waking up at 5am!

I’ll end with another smiling face.  This picture was taken a week or so ago when Will and Daddy went to the park.  He is getting to be such a big boy (Will, that is.  Ha!).

I’m encouraged as we begin 2012.  I distinctly hear the Lord say, “New year, new Will.”  It will be interesting to find out what that means!

We’re back!

The last 3 months have been a whirlwind.  Will completed his sleep study on September 20 and he actually SLEPT!  Praise God!  The presence of the Lord was so with us from start to finish.  We were so sure that this was it, that he had passed.  The nurse didn’t have to come in even once and Will did not require any supplemental oxygen.  He even took some breaths through his nose while he slept (rather than mouth breathing).

Here is a picture of him during the study:

Some highlights:

Gen 2:7… the Lord God formed the man of dust from the ground and breathed into his nostrils the breath of life…

Eph 3:20 Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.

On the way to the sleep study, James was “bargaining” with Will about sleeping at least 6 hours.  Well, Will exceeded expectations and slept over 8 hr.!

Now on to the final report… this was a bit of a roller coaster ride!  We had a routine appointment with his doctor just 2 days after the sleep study.  The doctor wasn’t prepared to give a report and he was actually quite flippant about the study results.  So we prayed for the Lord’s report.  Finally, on October 7, we got it!  The doctor said he was “on the fence” about proceeding with the trach removal process now or waiting until the spring.  Although markedly improved, Will had some mild obstructive sleep apnea during the study.  He said he preferred to wait until spring, but we agreed that we would discuss further with Will’s other doctor.  Will was scheduled to see her on October 10 (another routine appointment).  Although complimentary about the study, she was not “on the fence.”  She said, “See you in March.”

Needless to say, I had a day of mourning on October 10.  James had more of a peace about waiting, but I had to do one final appeal to the first doctor.  We finally spoke on October 17, where wisdom prevailed, and March was the final answer.

October and November were filled with visitors and visiting.  A trip to Michigan to see family and a trip to Wisconsin to see friends… a friend came to help a week in October, another came to help a week in November… a reunion with 4 best friends in early November at my house… whew!  All good, but no time to post! 🙂

Will continues to show us how smart he is.  He amazes us and his therapists with his memory and his awareness.  We are thankful for his progress and are depending on the Lord’s grace each day until he is healed completely.

With reckless abandon

Will’s favorite new pastime…big wheeling.  He has no fear and barrels down the driveway throwing caution to the wind.  Here are some highlights.

August

The last month and a half we have been working on capping Will’s trach during the day.  His doctor asked that he complete 4 weeks of this prior to scheduling his next sleep study.  It has been quite a battle, but we made it.  We had to take 2 breaks during this process due to colds.  It was also very labor intensive for all of us, due to increased suctioning and breathing effort.  Will also lost some of his confidence walking on his own during this process.  Here is a picture of him standing on his own in one of his new birthday outfits.  I miss this!

I’m happy to report that he made a lot of progress wearing his cap though.  His suctioning needs decreased by half.  Praise God for this and for His prayer warriors who carried us.  Now the question is:  is he ready?  His sleep study is scheduled for September 20, so we will know soon enough.

Other good news is that Will started school on August 15.  He goes 3 mornings a week:  Monday, Tuesday and Thursday.  Here is a picture of him on his first day.

I hope he doesn’t make this face at his teacher!

He seems to like school so far.  He goes running into the building every morning, and doesn’t turn back!  He has his own personal nurse to take care of his trach, and be my personal spy to report how his day went.  We are thankful and excited for this opportunity for Will.

Lastly, Will is starting to enjoy playing with a couple toys at a time.  Here are two of his favorites.  They are part of his learning to listen sounds in auditory verbal therapy.  “Bu Bu Bu Bus” and “Ah… Ah… Ah… Airplane.”

Please lift us up in prayer always, but especially these next couple weeks.  No fear!  No sickness!  Open airway!  Minimized secretions!  Strong, complete swallow!  Good sleep during the night!  No trach in 2 weeks!  Amen!

Happy Birthday, Will!

Will turned 3 on July 30.  Here is a picture of him with his cake.

Will loves vehicles that move fast!

Family shot.

We had to help him blow out his candles.

He wasn’t really into opening gifts again this year, but it looks like the balloon got his attention.

Here is a picture of Will with his cousin, Jack.  It is the sweetest picture because they are holding hands!

Lastly, Kiki and Grandad with their 3 grandsons.

We had a great day.

July recap

Our month started with another family vacation. We drove up to Michigan to see family, and stopped in Cincinnati on the way to see friends.

Here we are in Cincinnati.  Will enjoyed having his friend Luke push him around in the wagon.

Next stop was Battle Creek to see Will’s grandparents.  Here’s a picture of Will and I with my Dad and Rosalie.

It was a hot day, but we managed to play at the park for a little while.

Will is the master of facial expressions.  He likes to make this funny face sometimes.

And wearing Daddy’s hat brought a big smile.

We also stopped in Grand Rapids to see our cousins, uncle and aunt.  Unfortunately, we forgot to take pictures!  The trip went remarkably well for all those hours in the car, but we will need a while to recover before the next one!  Hopefully we can get some visitors down here this winter.

We ended the month celebrating Will’s 3rd birthday with family and a couple close friends (who are like family).  Stay tuned for a birthday post.

Lastly, Will has been doing well in his therapies.  Well, maybe too well…

I was in deep discussion with one of his therapists while Will was riding his toy truck.  Here’s a visual to know what I’m talking about (and one of my favorite birthday pics, by the way, since it’s such a classic Will shot):

All of a sudden, we realized that it was very quiet.  For the last few weeks, Will has been getting off this truck by himself and walking to various locations in the house (mostly to the door to indicate he wants to go play outside).  So, I scoured the first floor for him… but no Will.  That’s when the panic feeling came.  About the same time we heard banging upstairs (of cupboards to be specific).  Yes, you probably have figured it out… Will went upstairs on his own.  Something like this…

The terrifying part is that he pulled up at the top of the stairs because I found him in the master bathroom standing, banging cupboards!  We all were excited and freaked out at the same time.  All I can say is thank you God for keeping him safe.

Our first family vacation

We were able to get away for a long weekend, and spend June 2nd & 3rd just outside of Panama City Beach, FL.  Thanks to the generosity of the Lees! (our brother-in-law’s parents).  This was Will’s first experience with sand and the ocean.  He did amazingly well!  Here are some of my favorite pictures.

Someone just plopped me down into this sand.

This beach chair is better I think…

I think I can handle this… with Daddy’s help.

Presenting… the beach.  This pole is nice to hang onto.

Braving the deep water…

Our only family shot:

We were even able to stop and see James’ Gran.  She is strong to hold such a big boy!

Lastly, Will’s tonsillectomy is done!  The doctors thought the tonsils were truly obstructive, so we may see good results in 6 weeks when Will tries another sleep study.  Also, thank you to Kiki and Grandad for their help that week.

Hope

This week we had Will’s post-op appointment with his ENT.  She is recommending that Will get his tonsils out because it is possible that they are causing obstruction while sleeping with his trach capped.  She mentioned that his tonsils may even be causing the laryngeal irritation that was observed April 1.  Six weeks after the tonsillectomy, Will gets a chance to do another sleep study!  His tonsillectomy is scheduled for June 8, so there is hope that he’ll get his trach out yet this summer!

Will LOVES his bath, and now he has his own big boy tub.  Daddy thought it was funny to give him a mohawk.

Daddy also got him to play in the grass recently.  This is huge for Will, since he doesn’t typically like strange textures.

We’ve been trying to work on our house during the weekends.  A couple weeks ago, Will made his first trip to Home Depot.  We did not purposely dress him to match; this was just a coincidence!

More good news:  Will had a breakthrough at OT last week.  He was able to put rings on a stand and also put shapes into a clear bowl all by himself.  And he repeated each of these activities several times in a row.

Revelation and continued prayer

A lot has happened since our last two posts.

The healing service at our church was amazing.  Will’s nurse came to the service to support Will, and the Lord healed HER back instantly!  The Lord also called out healing of RETINAS.  Very specific, and ONLY for Will.  We are so thankful as we wait for His word to be completed.  I keep getting Isaiah 55:10-11 regarding this word:  “For as the rain and the snow come down from heaven and do not return there but water the earth, making it bring forth and sprout, giving seed to the sower and bread to the eater, so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it.”  I have to admit I’ve been a bit discouraged because Will’s retinas were not healed instantly.  I wasn’t sure what to say or think.  Of course we ask God why?  Well, today He answered me.  He said, “Do you know me?”  His character is impeccable.  He is righteous and just in all His ways.  He is good all the time!  A more appropriate question for me to ask Him is: “What battles are we to win here?”  I am so thankful He answered today.  I have peace!

Next, we moved into our new home on March 19.  We love it!  Special thanks to our family and friends who helped pack, move, and unpack!

Will has had fun exploring the new house.  He has adjusted well, especially since his bed and toys came with him.  Here he is playing with our desk chair, which is one of his favorite pastimes.  It’s really fun to spin it!

Lastly, Will had a day surgery last Friday, where his two doctors (ENT and pulmonologist) looked at his airway together to try to determine why he failed both of his sleep studies last summer/fall.  The study showed chronic irritation/swelling around his larynx (the apparatus that enables us to speak and swallow).  His epiglottis also appeared to be lower tone than the doctor would expect under anesthesia.  It doesn’t seem that this is ALWAYS the case though, since last July he did not have this irritation (the low tone may or may not have been there though).  Please pray for wisdom regarding the next steps that the Lord would have us do.  Unless the Lord intervenes, it doesn’t look like Will is getting his trach out this summer.  The next routine repeat of this study is not until October, then it’s cold & flu season again, and the saga continues…

As you can see, Will has recovered quickly from surgery.  Here he is lounging in his walker with his helicopter:

Look at me now

A few weeks ago we ordered Will some glasses.  The doctor thinks it might help with his long distance sight.  We picked them up yesterday and as expected he is not excited about wearing them.  Still after a couple of minutes of holding his hands down, he finally walked around for awhile with out ripping them off.  They are transition lenses which should help with light sensitivity when outside.