Thursday, March 31st 2011……

So we are back home after round 5 of 3f8 and we couldn’t be happier! Treatments last week went as expected of course with lots of pain for Bailey but thankfully no serious complications. She has the hardest time during treatment with her neck and her left ankle. The 3f8 antibody somewhat attaches to the nerves and of course it seems to play on her weakest link so to speak. Thankfully between the high doses of pain medicine and hot/cold packs she tolerates it and the pain goes away by Saturday, although it makes for a pretty tough week for her.

We are now home for 7 weeks until we must head back for the next round. I am very pleased to say that Bailey’s hair is growing so fast. It is thick and has lots of waves, which she is not to happy about. The hard part is trying to convince her that we must start brushing our hair again because walking around looking like a chia pet is not working LOL! Another milestone we have made was that Bailey was finally able to take a bath!!! After a whole year of sponge bathing, Monday marked our first day of bathing in a tub again. Of course this was very scary for her and she was very reluctant to accept this new change. After many shed tears and lots of explaining we finally got her in the tub. Now you must keep in mind that her nerves and her skin for that matter are not used to being submerged into water let alone warm water, so that makes the experience even more difficult because she has to get used to this again. Once we got her into the tub there was more tears until we got her posse of Barbie’s to join the party! I even offered to get in the tub with her if that helped (difficult times call for extreme measures sometimes LOL), needless to say she ever so abruptly told me that I was entirely too big and would take up too much room…and then the laughter came! Of course laughter, even at my expense, was the best outcome I could have hoped for and I didn’t mind one bit. So an hour later she finally decided that she was ready to get out of the tub but only after making me promise we could have a bath again the next night LOL! Oh the little things ….I am very proud to report that we have been having a bath every night since then, with our Barbie’s of course,  and it’s actually one of the first things she asked me to do when I walk in the door from work which makes it very easy on mommy!

Also I am very happy to say that Bailey will be starting another type of physical therapy now. As of next Thursday she will have water therapy incorporated in her physical therapy routine once every other week. I am very excited and anxious to see what type of progress she will make. She is also very excited to be able to get into a pool again so I think she will do well. She has been using her walker alot more at home and the new braces for her ankles/legs have helped tremendously! I am praying by summer she will be walking everywhere and we can retire her wheelchair!

So as you can see we will have a busy 7 weeks at home but we are home nonetheless which makes us very happy! We are still continually blessed everyday and are very thankful for every milestone reached. She is my constant reminder that nothing is impossible!

Friday, March 18th….2011

Well we had a great visit with our Tulane friends on Wednesday for Bailey’s surgery. We went to Tulane to replace Bailey’s Quentin cathedar with a smaller mediport. Thankfully with this port I will be able to bathe her in a bathtub again!!! You cannot imagine how happy I am that she will be able to bathe but also swim! With the old port she couldn’t get wet so we had to do sponge baths and of course no swimming (although last summer I broke the rules and got a blowup canoe to put in Mimi’s swimming pool so my little girl could enjoy the water). Needless to say those are things of the past and we have reached another milestone in her journey! Another routine of how life used to be now our reality again.

We have thoroughly enjoyed these past six weeks at home considering this was the longest stay at home that we have had in a year! How time flies when life is busy. I still cannot believe that it has been a year sometimes. With that being said we took every moment and enjoyed it to the fullest. We went for a boat ride on Mr. Cody’s boat, ate crawfish several times (Bay’s favorite), moved Bailey into her new room, had a hotel stay in Baton Rouge just to get away, went to school and of course spent precious time with our family and friends. We were very busy!

Tonight we are heading to New Orleans because our flight leaves at 6am for New York. Thankfully this stay will only be for one week while she gets her 3f8 treatment. She has also finished round 4 of Accutane and I must say that I am counting down the days until we reach cycle 6 of that medicine. Although I know it is helping and doing what it should, I do not like to see how it affects my little girl. The mood swings are something else. She crys at the drop of a hat and I won’t even mention what it does to her skin! So as we go on our next trip, please keep her in your prayers. The treatment weeks are so hard on her and the pain is undescribable, but of course she never complains. She makes it so easy, sometimes I forget she is only 8!

I will keep you all updated with her treatment! Enjoy some of the pictures we took on our six weeks at home!!! Never a dull moment with that little girl!

Dr.Seuss Day at School!

Pretending they were at the beach!

My Cupcake!

Learning to drive the boat!

Perfect Day with my two favorite people!

Driving mommie around!

Riding four wheelers and golf carts!