Wednesday, September 30, 2009

A Special Visit...

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Yesterday we had the amazing opportunity to meet the Cates family! We have been following this family's journey through NEC,Omegaven and finally multiviseral transplant over the past two years. Their beautiful little boy Carter is an amazing kid and it was so fun to get to hang out with them for the afternoon. They live in Dallas and due to Carter's immunosupression, took a road trip to Boston to meet with their doctors to follow up with transplant but to also look for direction in Carters new issues with Autoimmune Hemolytic Anemia.


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It was no nice to sit down and meet face to face with another family who knows first hand the stresses of raising a medically complex child. Drop by their site to find more out about their little man and a glimpse into their world!

Tuesday, September 29, 2009

Overdue Update...

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I'm so sorry about the lack of updates. The carnival of blood products went well on Thursday and Friday. Labs were drawn yesterday so we are waiting to see how he responded to the various infusions and where his counts are at. Gavin is still fighting multiple infections and we are waiting on this last culture to determine where we will go from here. The most probable plan is that Gavin will be admitted late this week to have the central line pulled and a femoral line placed. We will then wait and pray the infection does not travel to the fem line and attempt to get a few days of negative cultures. Once we have negative cultures we will get the new central line and go home. But again this plan is not for sure.

On Friday we picked up Gavin's new wheels. I have to admit that I was very anxious getting this new chair as it kinda just further confirmed that Gavin is not the same child that he was only four months ago. The fitting was very rough and I left duPont feeling very defeated and a little sad. On the way home I really needed to get coffee to stay awake on the long drive home. Me being the crazy mother that I am got Gavin and his new wheels out of the car and went into Wawa. Well -- my heart was completed filled with joy as I watched Gavin attempt to drive the chair through Wawa. His driving wasn't perfect -- but it was an attempt, a further sign that our little boy in still inside his tired sick body. Even if I have to drive his chair most of the day it is totally worth the few moments where he can have some independence.

Another exciting thing happened today but it deserves its own post so you'll have to come back and find out!

Wednesday, September 23, 2009

Lots of Things...

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What a past few days we have had. We started Gavin's Oxygen about two days ago and I really think we are seeing a difference. Last night I was awakened by the baby monitor -- I heard Gavin's little voice babbling on about his Thomas movie. I have never been so happy to wake up at 2am! This is the first time I have heard Gavin say a word in several weeks, needless to say it made me take a sigh of relief. I guess I'm cautiously optimistic that it's the O2 giving Gavin the support he needs. I think his coloring is better, not so grey and I got several comments from people today commenting, "wow, his eyes are open." I'm trying not to get my hopes up, as Gavin is far from being back to his old self, but it just feels so good to see a glimmer of hope in this situation.

Today I found out that Gavin's cultures from Monday are positive for two bugs. Also found out he is in need of blood, albumin, IVIG and we are going to start the GCSF injections. Tomorrow we will spend the day at the hospital getting blood and GCSF and Friday Gavin will get the IVIG and Albumin.

We also found out that Gavin's power chair is ready to be picked up -- this Friday! Our blood pressure also went through the roof as we realized that our van is not done! We ended up using a ramp van from the dealer who will be working on our car so we will head over to the wheelchair clinic after Gavin's infusions and try out his new wheels. We have tons of anxiety about Gavin's ability to use his new chair. Gavin is a different child since we first put him in that demo. We'll see how it works out.

That's about it. Thank you all for supporting our little family.

Sunday, September 20, 2009

Weekend Update...

Gavin continues to struggle through this infection. The fevers are still on and off and he had another -- even worse -- episode of dropping his O2 sats. We are waiting on oxygen to be delivered to the house and Gavin will start on O2 to help him not only maintain adequate O2 levels but also maybe, possibly give him a little more energy.

Madison had a very difficult time during Gavin's last scary low O2 episode. she ran out of the room sobbing and it broke my heart on so many levels. Pray she can cope in her own way and that Adam and I will understand what she needs and give her the best possible chance for stability.

I've had two photo sessions this weekend -- which has made me feel happy. It's been nice to escape the chaos. Tonight we have our evening nurse back and I think Adam and I are both doing a little dance for joy!

Friday, September 18, 2009

A Little Update...

It has been another difficult week here in the Owens' house -- not so much physically but just mentally. Adam and I are still struggling with watching Gavin's blank stare but I guess it's getting a little easier. Maybe.

Gavin is still running fevers on and off. We are now 48 hours on antibiotics so I am praying that things start to improve. He will certainly need blood early next week as we can all see the color draining from his little body. I was able to talk with the doc via email yesterday and sadly I didn't really get any information other than what we all know -- Gavin isn't doing well. Our doctor reminded us that Gavin has proved him wrong on more than one occasion and we are all praying he will do it again. Gavin had a scary episode of dropping his oxygen saturation yesterday, which had me very worried and about to run to the nearest ER but thankfully he was able to pull out of it. Lately when Gavin sleeps it seems like he is so fatigued that his body literally shuts down, including his breathing. He takes such shallow breaths that I think yesterday it caught up with him and he woke up grunting for air and hyperventilating. It took about an hour but then returned to 98% or above.

Yesterday Madison started cheerleading and just loved it. She did a really good job and even though I wasn't in the class watching I would sneak a peak through the window and she was having a blast! I love seeing her happy, especially when I know things are a little tense here at home.

Thank you all for your prayers. Keep them coming.

Wednesday, September 16, 2009

Positive Cultures...

So the cycle begins again. After being off antibiotics for three days Gavin's blood cultures are once again positive. Yesterday we also sent out urine as it appears he may have an infection there as well. Tonight we will start back on two IV antibiotics and try to treat him at home.

Home is the best place to heal.

Tuesday, September 15, 2009

Big Girl Bike...

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Maybe we should switch that title around -- Big Bike, Little Girl. This weekend we got Madison her very first bike. Becasue she is so tall for her age we ended up buying her a 20 inch, as the smaller ones were just to small for those long legs! She is doing really well and is having a blast. It is so crazy to see my little baby girl riding a bike and looking not so much like my baby girl.

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Sniff. Sniff.


She is so stinkin' beautiful.

Monday, September 14, 2009

Spring Valley YMCA...

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After my last post I thought I've give you a glimpse of how truly amazing the Spring Valley YMCA is for our little family. Adam and I have always loved belonging to the YMCA but this past year we not only love to spend time there but are really greatful for the staff and programs they offer. The YMCA is completely wheelchair accessible. This means that I am able to bring Gavin upstairs onto the nice 1/13th mile indoor track and walk with him while over looking the huge indoor pool as well as the two courts, where Madison is often taking a class. There also is a smaller fitness center upstairs with cardio equipment as well as weights that allows me to work out with Gavin by my side.

They have a beautiful outdoor pool where we spent most of the summer, which is also accessible for Gavin. I was told last year that they were willing to do what ever I wanted to get Gavin in the water, which we did! Outside the pool is another playground that is completely wheelchair accessible. They even recently put in a new piece of equipment with Gavin in mind, as we can wheel him right on -- the Sway Fun Glider!


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Then there is the special needs class, which is also open to the community free of charge. This is an unstructured class where children with special needs can take advantage of their top of the line equipment, including a ball pit, large and small trampoline, mood bounce, adaptive bikes, sensory tools, swings and much more! This is where we found out about Gavin's new bike, from the Ambucs, who also donated two beautiful new bikes to the class.

These are things that make this mommie very happy. Even though there are many places which Gavin is very limited it makes me smile that we have this place to go to where the limits are lifted off. No organization is perfect, but the YMCA is close.

Thank You Spring Valley YMCA and a huge Thank You to the Ambucs for giving our little guy a bike!


Friday, September 11, 2009

Drained...

This week was one difficult seven days. I'm not sure what made it different from every other week but tonight I'm feeling very drained. There were so many events this week which I was brutally reminded that my little boy is sick -- not that I don't know that already, but sometimes our life that I call our normal is flashed back in my face with a huge abnormal sign. Sometimes it just hurts.

This week Gavin was supposed to start a new class at the YMCA. In the back of my mind I pretty much realized that this was not going to work out so well. My fingers were crossed that Gavin would actually be awake long enough to find some enjoyment out the play time. We arrived at the class called "play ball" -- Gavin was wide awake. To my surprise even though the class is entitled "play ball," there is actually no ball playing involved. The entire class is a play time on the gymnastic equipment -- which my little boy cannot do. He can play ball -- and that's what I assumed he would do.

I left the class defeated. Gavin really could have cared less, in fact I think he fell asleep soon after. Me however -- I was almost brought to tears. I think it was the fact that I could not make this happen for Gavin. Adam and I put so much energy into making Gavin's world accessible for him. When I came to the realization that this was not a class my child could participate in because of his disability -- it hurt. I hurt for him.

That same day we spent an hour or so at the indoor pool. Madison was swimming in the deep end and I was sitting on the edge and Gavin was sleeping parked behind us. The aquatics director can over and nicely told me that Gavin's wheelchair is blocking the lifeguards view and that next time I would need to take Madison over to the shallow end to swim, so Gavin would be out of the way. Again I was almost brought to tears -- over the simplest thing. Because in a perfect world I would be playing in the pool with both my children. Sometimes it just hurts.

It is so difficult watching Gavin slip away. We don't know what his future holds. We could have many years ahead but we could also only have a few more days. It sucks to live that way. It's draining to try to fit a life time of experiences into a few short years. It is so draining sitting for six or so hours watching blood drip into your child's body, knowing that we will just have to do it again next week. It sucks.

I know the drained feeling will subside, but I often wonder how Adam and I can possible do this for much longer. We will. We want to. We will do anything for our family. I'm not looking for advice or pity just an open ear.

Mito Sucks.

Wednesday, September 9, 2009

T-Shirts...

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Last week we received our Mito awareness shirts in the mail and yesterday we went out and wore them with pride and took a few photos. Adam and I really have been wanting to get a family shot, but our little chicks had other things in mind. After our failed attempt at a family photo I got a few shots of the kids modeling the tees.


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Please continue to pray for Gavin -- he is still just not doing well. He had a horrible night. Despite Valium and some benadrly he still was very restless all night. He will be going back down to the hospital tomorrow for more blood and maybe possibly start the GCSF injections. I'm also hoping to start the patch today.

Don't forget to order your shirts -- it's for a good cause.

Come on.

We know you want to.


** You can click on the "shop for a cure" logo on the side bar of this page to be taken directly to our online shop!

Tuesday, September 8, 2009

Back Home...

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We are home from the beach! We had a really nice time but we were all very ready to come home. Gavin didn't do so well this weekend in fact Him and I never actually made it onto the beach, except for the one two second failed attempt. Gavin and I just walked the boardwalk going in and out of the air conditioned stores, trying to keep his temp down. Gavin continued with his crazy irritable behavior. He did a little better this weekend but today he has been back to his manic irritable mood. We are going to start him back up on the Clonodine patch, which he was on early this year to aid in his withdraw from Morphine. Hopefully it will again have that same calming effect.


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Madison is getting back into her school routine and Adam and I are getting back into our routines as well. I guess we all are saying good-bye to summer and gladly welcoming a calm fall.

Friday, September 4, 2009

In The News...

Jack Black


Click here to view the full article.

Hematology, IVIG and The Beach...

Gavin's Hematology appointment this morning went very well. It is always to encouraging to meet a new Doctor who is willing to continue our current "theory of care," and fully respect why out current team of doctors choose this plan for Gavin. Gavin is is desperate need of the GCSF injections or Neupogen to boost his white count. His counts are very low and put him at severe risk for infection in addition to his already baseline high risk for infection due to his leaking stub of a bowel. Normally she said that she would really like to get a bone marrow biopsy to make sure the benefits out weigh the risks, but with Gavin's situation she would be willing to begin the Neupogen just based on the numbers. That's great news. We do not know how Gavin will respond to the treatment but we hope it will help. He continues to be severely neturopenic and that's a very scary place to be.

So here we are now sitting through yet another infusion. If there is one things that I dislike the most out of this situation is sitting for countless hours while Gavin's gets tanks with all these blood products. It just makes for a very long day. Despite the transfusion on Wednesday Gavin's hemoglobin is still only 8, which will drop much lower in the next few days -- ensuring us more time here sitting. His white count dropped again to 1, further showing the need for the GCSF.

In other news, Gavin spiked a fever this morning to 102. We are drawing cultures and saying a prayer that we can make it through the weekend at the beach. Did I mention we were going to the beach? Call us crazy, but it's our last chance at a vacation until next year.


So -- lets pray we have a great weekend!

Thursday, September 3, 2009

First Day of School...

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We did it -- we all did it! We all made it through Madison's very first day of school. Adam and I were both able to send Madison off to school this morning. We have a lot to learn about the timing of getting ready and to school, so we had to roam the block for a little while (30mins) until it was ok to start lining up to go into school.

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Madison was a super star. She was so ready and didn't look back once. Adam and I are so stinkin' proud of our little girl. I mean really -- she is a really cool kid and everyday she amazes us with her sweet spirit!


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Wednesday, September 2, 2009

Update...

So Gavin's blood counts were all pretty darn low. His hemoglobin was 5.2 which could certainly be attributing to his irritability. I'm not so cure he really is any better after getting the blood, but we'll see how he is in the morning. He is also in need of IVIG, which we are going to try to squeeze in before we leave for the beach and enjoy our last taste of summer.

Gavin has an appointment with Hematology on Friday morning where we should be starting the GCSF injections to help boost with white count. His immune system is just not looking good these days and with his already high risk of infection it can be very scary. We'll just have to see how he responds to the GCSF.

Thanks as always for keeping us in your prayers!

Blood...

We will be heading down to duPont today for a blood transfusion for Gavin. Lets pray this is what he needs to help him feel better.