Taking a big breath....

I realized today that I have no idea where time has gone since we got home from China...what a crazy whirlwind it has been! Guess I should back up a little bit and try to recap things a little bit before they are totally out of my memory...

We survived our week-end with a platelet count of 7,000 and Hope was an absolute trooper for that Monday clinic visit. What a strange feeling that was for me to walk into that heme-onc clinic where I work as a parent...oh how very hard it is to be on the other side. But I got the privilege of seeing first hand how wonderful the staff are that I work with. I know how hard it must have been for my friends to be making my daughter cry and I know I had the "I'm scared to death stone face look/I'm so tough" going on....but inside, my heart was just breaking for Hope. Holly did an amazing job on her IV (of course) and Becky from Child Life was right there distracting Hope and wiping her tears the whole time. Hope was such a trooper though, just like all of the kids I care for. So adapting, so forgiving, so unbelievably strong. And what an honor it was so share some time with other parents that morning while we waited for Hope's platelet count to come back. There were lots of cheers when it was 32,000!!! No infusion needed at this time, just rechecking it 1 week was the plan. Ahhhh....thank goodness. Hope slept for about 2 1/2 hours when we got home, poor little thing was so exhausted.

On Tuesday evening, Chris had taken the kids outside to play on the swingset while I cleaned up the floors that had been accumulating lots of cheerios, crumbs, stickiness, etc. since we'd been home. He came in and said he thought Hope had been bitten by bugs and he had brought her in. She had huge areas that looked like welts on her leg and both arms and they were huge. Didn't really think much of it, just figured she was sensitive to bug bites. In the morning, she had large red areas with fluid filled vesicles in them - thankfully in this day and age of emails and digital pictures, I was able to get them to Hope's pediatrician and her hematologist - and it was determined that Hope had yet another reaction to a different vaccine she had received 10 days prior. She had an atypical varicella rash from the chicken pox vaccine....for real???? We had already read only 1 in 30,000 kids get ITP from the MMR vaccine - something else now? THankfully we started her on an antiviral medication Acyclovir right away to try and stop the spread of the lesions and help them crust over quicker. The poor girl was so very itchy and the areas were huge and looked so painful. But outside itching, she wasn't in any other distress...amazing. The only concern was this new rash affecting her platelet count, so we just kept a close eye on her.

Couldn't really go anywhere or do anything until her lesions crusted over, but it was great bonding time for us. The girl can play! She has such a great imagination at 18 months and it's so funny to see her interacting with different toys, her stuffed animals and catching on so fast!

By Friday, we were able to get out a bit and met Chris for lunch at the mall which was nice. On Saturday, we had a true test of her platelet count with a big fall but thankfully everything turned out OK. We've had some sibling rivalry coming out and Matthew had a few rough days not really wanting his sister to be around. Thankfully, things seem a lot better cause it was stressful for a bit there last week-end!!! They are some of the times it's so hard that we can't talk to him and know he understands 100%. He definitely hears us, but can't talk in return so we working hard making sure our time with him is spent equally with him as well so that things are not so hard for him. We have finally got him back to his potty trained little self during the days - and he now loves to help take care of Hope after her baths and knows the diapers are just for her :) He even leaned over tonight after she was all ready for bed and kissed her forehead - all on his own doing - priceless moments!!!

My Mom-Mom came Saturday with my brother Dave and what a wonderful time everyone had together. Hope and Matthew sure did have a blast, and we all were sad when they had to leave Sunday evening....or should I say TRIED to leave??? Poor Mom's car broke down on the turnpike, she was driving along and all of a sudden, it felt like the car switched gears and then she'd lose all internal power, no dashboard lights, air conditioning, turn signals, etc....so scary. The short story is that it went to a dealership (2 of them) where they couldn't find the problem so they said it was safe to pick up yesterday afternoon. Well she didn't get 2 miles when it happened again. Thankfully Chris's work was close by, so we swapped out cars with him. He ended up driving it (Powerless) on the turnpike to her dealership outside of West Chester. We followed him in and the kids were little angels...little Hope had been in the car for almost 8 hours by the time we got home last night and she was such a trooper!

Must say those extra days having "Mom-Mom" and Uncle Dave here were so nice. The kids loved having her here as well, and I don't think we have any stickers left from the sticker play that took place. Lots of giggles and ornery stuff going on - but so many smiles! It was also nice to have Mom here for Hope's appt. on Monday for bloodwork and to see the orthopedic doctor about Hope's foot. Always nice to have someone with you, and there's no one like your Mom!

We had good news about her labs, platelet count is up even more to 51,000! I didn't care how high it was - just happy it was going up!!! We know it may still be a roller coaster - that that's OK! Her weight was also back up to her baseline weight which was awesome!!!

We weren't sure what to expect from the ortho doctor, but as it turns out Hope's foot is "moderate" according to her doctor. Because her club foot never was attempted to be repaired or casted in China(she had some sort of massage done and had a brace), we kind of have to start where a newborn would start with casting. She will get a new cast once a week for about 6 weeks and then she will need a surgery to lengthen her heel cord and will be in a cast then for 3 weeks. She will then be fit for the special shoes with the bar keeping her feet pointed out that she will have to wear until she's 4 - but only at bedtime. The doctor also thinks Hope will need a tendon transfer surgery when she's about 4. So, Dr. F asked if she wanted me to put Hope's first cast on Monday and I said not yet please. Can I just have a few days with no pokes, a decent platelet count, and a chance for her to go in the pool and run around before we start? At first I felt guilty but I am so glad I said no. I needed this little break and I must admit I'm a little nervous about what will happen with the casting. Hope is SO active and I am sure she will figure out ways to get around but it does make me sad knowing we are going to put her through this even though the outcome is really worth it. It's just amazing how kids adapt and overcome - I can't imagine walking on the side of my foot like she does or getting up so easily by pushing up on her good foot...but this is how she learned to walk, run, and she does it so well! She also loves loves loves her baths and with the cast from her toes to her thigh - we can't get it wet so we will have to get creative with baths and just life in general for the next few months:) Thankfully there was a really cool staff member who will be will us every step of the way for the castings if we need anything or have questions. We start this process on Tuesday, August 9th at 745am and will go from there!

Today was a rainy, dreary kind of day. Had to pay bills and that always makes me dreary these days :) Hope and I did some grocery shopping then it was off to get Matthew for his speech. Miss Sue has 2 little ones now for speech sessions - Hope loves to follow along and she does most of what Sue asks Matthew to do. At first, we weren't sure how he was going to be with her in his session - but today went well. He did awesome on his listening and we just continually push ahead for a speech....we aren't there, and the best way to describe it apraxia like a stroke patient has when it's in there, but can't come out. So, we just continue to work hard!

We all got home and had a nice dinner together, it's nice to have 2 little ones trying to sign and now say some simple grace at the table!!!I'm glad I got a good dinner done - that's been a little tricky since we've been home figuring out timing for meals in between appointments, etc. so I won't lie and say pizza and Friendly's have been our friends on a few occastions this past week and a half and we are using up what Mom left in our freezer which has been helpful. I did get a nice casserole made, mashed potatoes, fresh corn, and fresh bread made tonight....was very yummy for this dreary rainy day!

We then threw on some jackets on the baby and stood in the rain watching Matthew and playing the Cozy Coupe where he was pushing Hope along in her little bus....he thought he was hysterical pushing her along. It wasn't too long that we were too cold and it started raining a little harder so we headed back in. Love that they dont fight going in after activities. Probably cause they know some sort of reward and reeinforcements were being set up for trying to add them in :)


Tomorrow is Thursday already...early morning for Matthew to the IU, then Hope and I have to take the car to get the oil checked and state inspection. Then we get to meet a dear friend and her 2 precious daughters for lunch tomorrow before their appointment at 230pm.

The days are flying by - I sure wish they would slow down a whole bunch! Too many things to do, see, and make sure that things aren't stopped!!!!One of these days, I will master meals, cleaning, laundry, etc....with an 18 month old next to me :)

Pictures tell a thousand works, so even if you are totally bored with the post, hope you can enjoy some pictures of my precious babies`