Friday, January 27, 2012

Fun in the not so sunny weather

We arrived in FL safely, not without a few hitches though. Kendall got some shut eye on the trip from the airport to the hotel around 9:30. It was just enough to keep her up until after midnight once she woke up to check into our hotel. I've known Braden now for about 5 1/2 years and last night I learned a new fact about him. He dreams of ninjas in his sleep. I just so happened to be his victim ALL night last night. So between Kendall's few wakings and Braden's ninja kicks and punches, Matt and I got little sleep. Luckily, it is hard to stay grouchy when you wake up to the sound of the surf.
This is the reason Kendall is in the bed with Matt.

We did get to enjoy a few minutes of sun out at the beach. Braden was so happy at the beach. It makes me realize how much stress he must be carrying around at home when I see him this happy. He ran and ran on the beach today.

Here is a nice family photo we had taken today.

I'll update more later!
Love, Steph

Tuesday, January 24, 2012

All Is Quiet...until midnight!

All is pretty quiet on the home front this week. There is really not much to report on. This is a strange change of events for us, especially after the few first rough weeks of January. Her cdiff has started clearing up, although she is still on the high dose of vancomycin. Her blisters on her mouth and hands from "Hand, Foot, and Mouth" have mostly healed. She is still waking up quite a bit at night. We are working on tweaking her medications again to try to find the right bedtime cocktail for her.
This week we are preparing for Kendall's second time in the air. The first vacation we took her on, we spent so much time preparing her suitcase of medical supplies. I made sure to call the airport to see how they would handle all of the medicines and heparin flushes that we would have. In order to pack for a week for her, it took an entire suitcase for her enteral feeding supplies, central line supplies, and medicines. It just so happened that Braden had a suitcase about the same size full of his favorite toys and blankets. Somehow we switched the suitcases at checkin and Kendall's ended up getting checked. Unfortunately, we didn't get that memo until we had already made a fuss at security about how we had a "special needs" passenger. I made sure to tell them that we were traveling with many medications. I thought it was pretty cool they let us through without even searching the bag. Once we got to our vacation house and I unpacked the car, I realized the mistake and had to laugh at how stupid we must have seemed! Hopefully this time I can keep the supplies with us at all times. I'm also hoping that TSA doesn't make us jump through hoops to get through security.

On another note...Kendall has resumed her in home therapy. I made the decision to continue with "1st steps" in our home instead of taking her to outpatient therapy. I think it is going to be better for her for now. Once she is 3, she will no longer qualify for the in home therapy and we will resume outpatient. Today her developmental therapist visited with us and she brought with her a chart that told her appropriate things for an 18 month old to be doing. I am incredibly PROUD to say that my child is either right on schedule or ahead of schedule! How amazing is that. She has spent much of her 1st year in the hospital and is unable to move around her environment and yet is as sharp as a tac! She continues to amaze me on a daily basis. I look forward to shocking her OT with how much Kendall has progressed since she last saw her in November. We have been working daily on climbing the stairs. I hold her bottom half so that her left leg doesn't have to touch the ground and she uses her arms (with a little support from me) to climb up the steps. When we are done she just beams from ear to ear and signs to me that she wants to do "more". I love that she is impressing herself as much as her family:)

Please say a quick prayer for us that we have a successful vacation. It is going to be a very busy weekend. I work Wednesday night and we leave the next day. Most of our weekend will consist of cheering on the #4 car! If you have time to catch the race, look for the Racing4Research car. I will make sure I post many pics and video of our weekend. Please also pray that Kendall will wear the headphones I bought for her. This is what happens when I put them on her.
Her new favorite thing to do while I run down the road to meet Braden at the bus stop is to watch Sesame Street while sitting in her favorite chair with her favorite blanket. Here she is all snuggled up in her cosy chair.

Have a great week everyone!! Thanks for all of the wonderful comments on caring bridge!

Tuesday, January 17, 2012

Welcome to our new BLOG!

I have finally decided to start a new website outside of caring bridge. I have been so frustrated with the lack of ability to post video and add more than the allowed pictures on caring bridge. I hope that all of our loyal prayer warriors will jump on board with Kendall's new blog site and enjoy more pictures and videos. I will continue to post updates on caring bridge as well.

On with Kendall news...for the first time since December 24th, Kendall slept 7 hours straight last night. I think we gave her every medicine we had available to us to help that out but it finally did happen! It was definitely enjoyed but by no means expected every night. I hate to jinx it by celebrating too much. I think Kendall needed that sleep just as much as the rest of us. Her eyes have looked so tired over the last few weeks.

Right now we are just laying low and trying to get better. She had a nasty case of hand, foot, and mouth. She still has the remnants of blisters on her upper lip, as well as all over her little hands. I remember Braden having this at about the same age but it was much milder! Leave it to Kendall to get a bad case of it. Her ear infection seems to be better as well. We finished up her antibiotics yesterday. Now we just have to get this cdiff to leave us along and all will be well leading into her next scans in February.

I hope you all enjoy the picture. It is from a few weeks ago.