Out Of Touch

It has been awhile.  Life has been predictably busy.  Let's see...where to begin...

After my last post, Tyler was in the hospital.  Again.  It was only for four days, thank goodness, but it was a long four days since I was pretty much confined to the room just like he was.  Poor kid.  I have new respect for how he must feel when he is confined.  After four days and finally getting his antibiotic levels back on track, we came home.  We were thrilled!  He has been doing really well since although he is still on the IV antibiotics.  He continues to fight the MRSA around his g-tube.  Because of that, he is having surgery tomorrow to replace the long tube with a mic-e button.  We're hoping this will make a big difference for him.  He also has a scheduled lumbar puncture with spinal chemo therapy medications.  It's great that we can do it all at once so he doesn't have to go under anesthesia more often than necessary.

Brent's mom went home on September 3rd and I have missed her every single day.  We tried to convince her to stay and live with us but she really did have other things to go home to so we tried not to be too pushy.  LOL  She is incredible and we are so thankful for the time she was able to spend with us.  

My mom got here on the 10th.  It has been great to have her here and the kids are starting to settle into a routine again.  She is planning to stay for about a month.  By then I should be back on my feet.

Speaking of my feet....they are healing.  It is a slow, often painful process, but happening none the less.  I went to the doctor and she gave me permission to take off my left boot, as tolerated.  I pushed it pretty hard last weekend and then regretted it.  I ended up having to wear the boot all of this past week.  I have been keeping it off again this weekend and it is getting stronger.  I'll probably need to wear it again for a few days but it is nice to take a break, (no pun intended!)  The right foot is healing.  They took x-rays again and the surgery seems to be doing what it should.  I have several weeks left in that boot, with no pressure on my foot.  But, I am getting more and more mobile all the time.  I am getting quite creative when it comes to getting around. 

Brent is feeling better but again, it is a slow, sometimes painful, process.  He is getting stronger but still gets tired really easily.  We realized, too late, that he was allergic to the antibiotic they put him on to fight the MRSA.  Poor guy.  We thought all the awful symptoms were side effects from the infection.  Only after the antibiotic was finished did we realize that he was actually having an allergic reaction to it.  Luckily it did seem to kill the infection in the process.  Still.  I feel terrible for pushing him to finish all the pills!

Emma is doing well.  Feisty as ever.  She can be the sweetest girl in the world and then turn into a little stinker in a split second.  I suppose that's part of being a three year old.  She is starting pre-school at the end of the month and she is thrilled!  We ordered a super cute backpack and a few school clothes and she has been in girl heaven!  I am really excited for her to go.

Nathaniel is amazing.  I simply can't say enough to express just how incredible that little boy is.  He is the easiest baby ever.  He just hangs out, happy to get his bottle, happy when he gets his diaper changed, thrilled when we sit and love and play.  He doesn't cry much.  He doesn't get too upset.  He has grown so much!  He is rolling all over the place, trying to crawl some and working on sitting up.  He smiles non-stop, makes all sorts of fun noises and eats his toes as often as possible.  Quite frankly, he is the perfect baby.  :)  He turned one on September 1st.  (I still have to get that post put together!)  I can't believe he is one already.  Of course, he wasn't due until December so he is still small for his age but catching up all the time.  We just can't imagine our family without him in it!

I suppose that's enough from me for now.  I will try and do better at keeping up here.  Thanks, as always, for your continued love, support, prayers, emails, phone calls, cards, etc.  We simply could not make it through all of this without each of you!!  We love you!

Stir Crazy

That's how I feel. Cabin fever, I suppose. I am tired of being stuck inside. Summer in Western New York is very short. I am now destined to miss the rest of it due to my stupid broken ankle. Blah! No amusement parks or camping or day trips to the lake for me. Double Blah!

Alright, thanks for letting me vent. Actually, I really do have much to be thankful for. Brent is home. Although he is still not up to par, he is home and recovering. I am so happy about that!

Brent's Mom is here visiting and helping. To be honest, I don't know how we would make it without her. She is incredible and I am so thankful to have her here. The kids have all bonded with her but especially Nate. He gets super excited when she comes near him and I think that he is going to be really sad when she goes home. That goes for all of us, though.

Tyler is in the midst of "roid rage" and it is the worst we've seen. He is miserable. Poor little guy didn't sleep at all last night which meant Brent was also awake since I am of little use. Luckily he went to sleep pretty early tonight and we're hoping he gets some good rest. He is still doing his IV antibiotics and we pray that the infection gets better.

Emmalee has really enjoyed having her Grama Gardner here. They have been playing outside and reading lots of stories. Emma has also shown a real love for laundry! She was quite disappointed today when Grama told her they weren't doing laundry since it was Sunday.

Nathaniel is doing great. That boy just stays calm even during the craziest circumstances. He is such a love! He is truly a calming influence in our home. He has changed so much, even in just the past couple of weeks. He is very vocal now and loves to chatter, scream, squeal, etc. I think he likes hearing his own voice. Speaking of hearing...it is becoming more and more obvious that he does hear. He is very responsive now, turns when we call his name, looks when he hears a noise, etc. He is also beginning to imitate sounds. I think that perhaps he just needed time to catch up and for everything to start working together. We will still take him to the neurologist at the end of October but I am getting less and less concerned. I honestly believe that he will be just fine. I think it will just take him longer to develop than other kids. Considering he was nearly four months early, that is totally understandable. Either way, Nate is one amazing, adorable, sweet little boy!

As for me...I go to the doctor on Thursday and I hope and pray she takes this cast off and fits me with something more manageable. The cast I am in now is really starting to bug me. It is a temp cast anyway but I am hoping the next step isn't something even more confining. Most people don't know this about me but I have very claustrophobic feet. I know that sounds odd but these past two weeks of having to have them bound up has really started to get on my nerves. Sleeping is almost unbearable. (I don't even like to sleep with socks on!) Luckily I can take the boot off my left foot and give it a breather once in awhile. It is going to be a long twelve weeks....only ten to go!

All in all, things are getting better. Maybe the voodoo dolls have been put away for awhile. Thank you all for your continued love, support and prayers. We truly appreciate each of you!

From Bad to Worse to HOLY COW, Are You Kidding Me?!?

I am beginning to believe that someone in this world has voodoo dolls of our family and is trying to find new ways to torture us.

Brent is in the hospital. He was admitted early this morning. He has an infection in his arms that they are fairly certain is MRSA. He started getting redness and pain in his arms earlier in the week. However, he sort of pushed it off, thinking it was nothing, and trying to focus on me and the kids and everything else instead. On Thursday night I finally convinced him to go to urgent care. They took one look at his arms and sent him to the ER. They wanted to admit him right away but he refused because of the need to take Tyler to clinic on Friday and my obvious inability to drive. They pumped him full of IV antibiotics and let him come home.

By last night, the redness was beginning to streak up his arms and he had a fever. Obviously this caused some alarm and he went back to the ER. This time there were no excuses, they admitted him right away.

Right now they are trying to determine if he has MRSA. They are pretty certain he does but they are waiting for the final culture results. They are strongly considering removing a section of the muscle in his left arm because that is where the infection is concentrated. If the damage is too great, they will have to remove the muscle. They are hoping that the IV antibiotics will reduce the swelling and get rid of the infection. They just aren't sure yet.

I am beside myself with worry. I can't drive, I can't go to the hospital, I can't be with him and that is killing me. I hate that he is there alone. I hate that he is there at all. This whole situation is like a bad dream that I pray we will wake up from.

As if that isn't enough, Tyler was put back on his IV antibiotics on Friday. They actually wanted to admit him from clinic but they decided to go ahead and try the home treatment again. He still has a nasty infection around his G-Tube. So far he has no fever so we pray the antibiotics will do the trick.

All I know is that we could not make it through all of this without the help we have received from our friends, church family and health care professionals. We have had meals brought in, help with childcare, help with housework, etc. Our friend Tasha is staying with the kids and I and we are truly thankful for her. Also, Brent's Mom is coming in from AZ late tomorrow night. Having her here is going to be such a blessing.

I am a strong person and I know that. Brent and I are strong together, we have an incredible marriage, and we will get through this. I just wish I could understand why on earth these major challenges continue to present themselves, one right after another. We keep saying, "it could always be worse." I think it's time to quit saying that because it keeps getting worse.

Please continue to pray for our family. Your prayers are carrying us and they are being felt!!! Thank you....I will update again soon.

Hooray For Home!!

I am home! They released me last night and I got home about 6:00. I am so glad to be home. The kids were happy to see me and it was wonderful to sleep in my own bed. There's just no rest in the hospital!

I had surgery on my right foot on Monday. It is very sore and I won't be able put any pressure on it at all for twelve long weeks. That should make life very interesting. The left foot is in a big brace, kind of like a boot. I can put pressure on it, thank goodness. It is still sore but I think it is healing pretty well. The swelling seems to be down some and it doesn't throb nearly as much as the right foot. Luckily, after more x-rays, they found that there were no broken bones in the left foot. But, the sprain was really bad and there was some ligament damage. Nothing like the right foot but still enough to cause a good injury. I will probably have to wear the boot on it for a couple of weeks and then it should be healed up enough to go without.

My right foot is in a plaster cast of sorts and I can still feel how swollen the ankle is. The doctor said it will swell for quite awhile. After a few weeks they should be able to switch it to a fiberglass cast which will make things like bathing a lot easier. I still won't be able to put any pressure on it but at least it will be easier to manage.

Obviously I can't drive so that is going to make life tricky. Brent is going to have to take the next several Fridays off of work in order to take Tyler to clinic. We also have to have someone here at the house whenever Brent isn't home because I can't take care of the kids by myself. The help we have received already has been tremendous and we are so appreciative! Thanks to everyone for constantly lifting our family up in prayer as well. We certainly couldn't make it through all of our trials without all of you!

Never A Dull Moment!

Well, apparently we love Hotel Strong, (aka Strong Hospital) so much that we simply can't stay away. Thankfully it isn't Tyler who is here this time. This time it is me.

Yesterday Brent was putting Emmalee in the car to make their traditional Saturday morning drive to McDonald's for pancakes. I was bringing Tyler out and somehow managed to trip and fall. I severly sprained my left ankle and broke my right foot and ankle. I will be off my feet for several weeks. I have to have surgery sometime tomorrow to put some screws in to repair torn ligaments in the right foot. Thankfully Tyler escaped with nothing more than a scrape on the back of his head, thank goodness!

Please say a little prayer that my surgery will go well and I will be able to go home soon. I miss Brent and the kids so much! I'll keep you all posted.

Tyler's Funny Hat!

These were actually taken awhile ago but I just came across them again today and had to post. Ty had such a great time with this thing!!

Tuesday Tyler Update

We are HOME!!! Oh happy day! Ty is doing well. His skin looks so much better and the infection is nearly gone. He does have to do IV antibiotics every eight hours for seven more days. The hard part will be waking up for the 2:30 a.m. dose. But, it is a small sacrifice if it means we can be home. He was so excited to get home and began tormenting Emma and Nate right away. :)
Thanks to everyone for your continued love and support!

Monday Tyler Update

We are still here. Looks like we'll be going home tomorrow. Ty has to go home with IV antibiotics and that takes awhile to get set up. At least we have a plan and we can start getting ready. Tyler is ready to GO, GO, GO! I can't blame him. I'll update tomorrow; hopefully from home!

Saturday Tyler Update

Tyler continues to do well although he is super bored. Poor kid...it's no fun being confined to the room. We found out today that the infection is in fact MRSA. Yuck! MRSA in combination with being neutropenic is not a good thing. But, at least he is there and getting the medications that he needs. Now that we know that it is MRSA, they can get the right treatment going. We're still hoping for discharge on Monday but we'll have to wait and see. This throws his chemo off for a while until we get things under control. He sure likes to keep us hopping!!

Enjoy your weekend....I'll update again soon.

Friday Tyler Update

Ty is doing well today. He is feisty and keeps yelling "COME IN" anytime someone knocks. Funny boy! We're confined to the room so he is bored and making mischeif.
Still aren't sure what the infection is. We won't be able to go home until Monday, at the earliest. So, we'll just hang out here this weekend and hope for Monday! Thanks to everyone for checking in and leaving comments. Keep the prayers coming!!

Thursday Tyler Update

Tyler is doing pretty well today. Actually, he is in really good spirits and being his wild self. :) He hasn't had a fever, thank goodness, and they are pumping him full of antibiotics. The culture results aren't back in yet as far as what type of infection he has in the skin. They are worried about MRSA since he has had that in the past. Hopefully we'll know more tomorrow. For now, we're just prayinig that we aren't there the entire weekend. Brent is staying with him tonight so I can hang out at home. I'll update again tomorrow when I know more.

And off to Strong we go......

All our attempts to stay away from Strong have failed. Tyler appears to have an infection in the skin around his G-Tube, likely some sort of staph. Still running a bit of a fever and they are worried that it could be turning into something nasty. So we'll likely be admitted. Boo! Please say a prayer that all will go well. Thanks!! I'll keep you all posted.

Emma-Isms

Here are the latest Emma-Isms.....

Emma was saying the blessing at lunch and this was her prayer..."Heavenly Father, please bless us to have a good lunch. Please help me to be a good girl so that I can get a motorcycle. And maybe Bo-Bo (Tyler) will be good and he can ride on it, but only if he is really good."

She also just asked me if I would help her sing the "Apple Pets." I couldn't figure out what she meant and she said, "you know, the ABC's." The alphabet!

The "F" Word

The "F" word in our house is fever. We are constantly on the watch for a fever with Tyler because it signals infection. If his fever hits 101, we are automatically eligible for a "vacation" at Hotel Strong, (aka Strong Memorial Hospital.)

Last night Tyler and I sat up most of the night together while I prayed his fever wouldn't hit the magic number. Thankfully he stayed around 99.8 throughout the night and he is down again this morning. Whew! All I can say is thank goodness for our forehead thermometer. That thing is a true lifesaver and well worth the money. 

Tyler is neutropenic right now, (very, very low white blood count,) so we're laying low and hanging out at home. Please say a little prayer that we can avoid a Strong "vacation." Seriously not our idea of a good time!

Happy Birthday, Sue!!

Hope your birthday was fabulous! We love you!!