The Sky's The Limit...

There are many things that make me as a mommie so happy. One of those things is seeing my children smile and this week I fould a place that makes both my children smile -- a new playground! Not only is this a playground but a playground for all abilities -- even wheelchairs!

Gavin has been getting so frusterated when we go to the park yelling out "play, play." Sadly there are rarely things he can actually play on. This park was so great for both the kids. Even though it is quite a drive, it is so worth it!

We are hear at the hospital today with Gavin while he is getting a transfusion. His counts continue to drop and we are looking into some options for him to help him keep his counts up. We shuold have a quiet weekend ahead...

Just like we like it.

Keeping Busy...

We have been one busy family -- and that's a very good thing.  This weekend I had a great photo session in the morning and later in the afternoon we took the kids on a hike on the horseshoe trail -- as far as Gavin's wheels could go until the terrain got a bit to rough! Then on Sunday  we were able to take part in the Sesame Place Challenge, sponsored by the Variety Club, giving families with children with special needs a free day at the park.  Despite the heat we had lots of fun!  Gavin didn't do so hot in the heat as he does not regulate his temp very well, but we managed to get a few smiles out of him.

 

Gavin has been having a tough past few days.  Today he has been running a fever, which we still are trying to determine if it is hyperthermia or true fever.  Also, despite getting blood last week his counts are again very low and we will be heading down to duPont on Thursday for a transfusion.  The other issue we are having is with little fingers that pick off his ostomy bag at night!  Other mom's with ostomy experience -- what the heck do we do?  We tried all the basic stuff and nothing has worked.  On top of daily blood and gastric juice baths we are also having major issues with tangling at night.  Although Gavin does not crawl or walk he does roll back and forth -- over and over again!  He gets himself so tangled we are afraid that one of his lines will snap.  To give you a better idea Gavin has the following lines attached to him at night:

Ostomy bag.

Ostomy drain tube.

Apena monitor complete with two cables.

TPN line.

Omegaven line.

G-tube hooked to suction tubing.

Urine Cath, which is kept in overnight.

That a total of eight lines that get into a complete rats nest.  

What do other parents do?  

Lots of Things...

Howdy everyone!  Do you know why there have been no posts?  We are livin' life!  Gavin is feeling good and we are living every moment to the fullest.  This weekend we were privileged to be nominated to join many other families with seriously ill children and hit the high seas.  We had a great day out on the water aboard the Spirit of Philadelphia.  The kids had a great time and Mommy and Daddy did as well.  The best part was that our good friends from DuPont were on the cruise as well!  Thanks to the Kelly Ann Dolan Memorial Fund for giving our family a great day of relaxation!

Madison has been busy with soccer class as well as her preschool gym time at the YMCA.  Gavin has also been hanging out with Mommy next to the elliptical machine entertaining all the ladies in the gym!  With the weather starting to warm up we are starting to make our way around all the local parks and playgrounds.

Today we spent the morning at DuPont.  First came urology were we talked about Gavin's lack of peeing. We are just going to continue with the cathing and next month we will be getting some urodynamic studies to look for contractions in Gavi's bladder as well as a renal ultrasound due to a suspicious right kidney, which looked a bit large on the last imaging.  We then headed to the wheelchair clinic where we found out that Gavin has just about grown out his wheelchair.  Most likely within the next year we will be moving Gavin up into a "big boy" chair with maybe the possibility of a power chair

**insert mommy's cringe!

Thanks for continuing to think and pray for our family.  God has truly done an awesome work in Gavin over the past few weeks!  Dare I mention that it has been almost two months without infection?  Simply amazing.

Almost Forget...

I can't believe I forgot to mention the biggest news of all -- the Owens' family is going to Disney World!  Make-a-Wish has made our dream come true.  We are set to leave on May 17th for a week of fun at all the parks and relaxation at the Make-a-Wish resort, Give Kids the World.

They are so accommodating to all of our special needs and are bending over backwards to make this happen for us.  In fact, if Gavin were to get sick the night before we leave -- no biggie, we just go as soon as he is discharged from the hospital.  Our team at duPont is gong to do everything in their power to make this happen for us -- thanks guys, we love you all so much!

Someone also commented on how Gavin was sitting up in the photos.  Yes! -- Gavin is regaining a lot of strength.  He can sit unsupported for periods of time and although he still has moments of "hello are you in there?" the good moments are by far out numbering them.

Yes -- he is amazing,an answers to so many prayers!

Easter Fun...

Do you all even realize how wonderful it was to be home as a family this Easter?  It was great!  We had a day filled with lots of memories and we got to finally start some of our own Easter traditions in our own home.  

Gavin is doing pretty well.  He will be getting blood tomorrow as his counts took a drop.  Other than that he is really doing well. He is gaining most of his strength back and although he still is easily fatigued he seems to be getting back to baseline.  

If you would like to see more photos of the kids in their darlin' Easter outfits come visit my photo blog.

Home...

Gavin was able to come home last night and though he had a rough night of fever's around 102 and retching he seems to be doing much better this morning.  The only issue right now is his blood sugars are back up in the 400 to 500 range, which I'm thinking is due to the stress of the surgery.

Will we be able to spend our first Easter at home as a family?  We just might.

***sigh

That's a beautiful thing.

In The OR...

Gavin just went back to the OR to have a new central line placed. I think we are going home tonight but I'm still not sure. Gavin is still spiking high fevers so I'm surprised they actually placed the line today and I will be ever more surprised -- happy -- but surprised if we get to go home. They will be placing a larger line to help prevent accidental breaks - -thank goodness.

I'll try to update tomorrow to hopefully let you all know he is home!

A Little Crazy...

Crazy -- that's a good word to describe things around here right now.  On Monday Gavin's central line snapped leaving him with no IV access and plummeting sugars.  I had to rush him to our local hospital for an Iv to be placed so that we could manage his blood sugars.  Once the IV was placed we were transported via ambulance to duPont.  

Once at duPont they were only able to kinda fix the line.  It will infuse at a very slow rate without leaking but any kind of flush or high rate infusion and it leaks right out.  I insisted that we leave the ER to come home, so Tuesday morning Gavin and I got home around 2:30am.

Around 8:00am yesterday morning our doc calls with the plan for bringing us back in to try to once again look at the line and see if it can be repaired.  So we packed up again and spent the day down at the hospital again yesterday.  In typical Gavin style, on the way to the hospital yesterday he spiked a fever over 103 - lovely.  The surgeons decided that the line cannot be saved but were unwilling to place a new line until we have 48 hours negative blood cultures.  I again insisted that we take him home with the understanding that if he or his line become more unstable we need to bring him down right away.

We tentatively have an OR slot for tomorrow pending the cultures.  If they do come back positive we will need to be admitted and have a fem line placed until we can clear the infection.

Oh the drama.

A Wish...

After my long sad story about how we just can not be admitted -- Dr. R let us go. Actually - his labs were looking a little better so he felt we might be able to correct his electrolytes at home.  We'll see.  There is still a chance that we may need to come back.  One day at a time.  Gavin is still a mess.  I was hoping that the blood would perk him up, but it didn't.  I'm trying not to get so stressed out over it and just take one day at a time and try to find the progress, even the smallest glimpse, and thank God for it.   I actually felt better after spending some time with his doc and basically just spilling it all out.  I got the chance to review with him all the things that are going on and somehow -- I'm not sure how -- but somehow that made me feel a little more organized in my own mind.

Our evening ended on a very positive note -- Gavin is being granted a wish from the Make a Wish foundation! This is a great organization that helps fulfill wishes for terminally/chronically ill children and their families. Our wish ladies came out last night to interview our family, find out what our wish is and meet Gavin and try to determine what would make him happy.   We had lots of fun and the night ended with a feeling of joy -- that something positive will be happening for our children!  That makes me smile!

We are praying for a quiet week.  I will post is something is new to report.