For the first time in a while, Annabelle had a great weekend. Last Friday she wasn't feeling too well. She spent most the evening laying on either myself or AK. We visited some family at their pool and she wasn't interested in any of the excitement, she just wanted to lay back and watch others run around. I was ok with that though, last week was tough on all of us so I enjoyed the extra cuddles with my curly haired rockstar. We got home a little later than our usual bedtime and both kids were asleep about the time their heads hit the pillow.
Saturday we had to wake the girls up (it should be a sin to wake sleeping babies on a Saturday), but it was race day and we needed to be in Monroe Park at 8:15am! I am proud to be part of the Bone Marrow Donor Registry, and they were hosting a 5K for the 'Be The Match' foundation to raise awareness for donors. Before the 5K they were also having a Tot-Trot & I signed Mady up to run. She did a great job and got a medal for her run. Afterwards it was time for AK and I to do the 5K, in the 100% humidity and 90 degree sunshine.. down towards the train station and back uphill to Monroe Park. The walk itself isn't a comparison to the fight and struggle those waiting on a donor list are living, I was proud to push thru the sweat on their behalf and hope the money raised can help find more donors, saving lives and curing diseases.
After the race, we all came home to shower / change and head out the door. It was a busy day Saturday but Annabelle had a great time. She laughed and smiled all day while shopping in Williamsburg and then dinner at Grammy's house. The humidity died down and everyone was able to enjoy the sun and warm weather. It was a great afternoon. Annabelle made many laps running inside and outside, laughing the whole way with her chunky little legs moving as fast as they could. She ate wonderfully all weekend.
Sunday we visited some friends at a pool and this time, Annabelle was interested! She went swimming with daddy and kicked her little heart out. She smiled and laughed the whole time. She enjoyed being held in the water, she enjoyed splashing, she enjoyed kicking, squaking, and even dunking her face. Afterwards, she gave me a run for our money in the baby swing they had. Annabelle spent 1/2 her time in the swing and 1/2 her time in the pool, I would call it a great day.
Mady spent 99% of her time in the pool. Last year she was making great strides swimming by herself, and this year she seems to have picked up right where she left off. It was a relief, I worried she would regress but to my surprise - she's just like her father = a fish. Here is a video from last year.
This weekend was wonderful. I felt like a breath of fresh air has come over my family. I can't place my finger on what it is, but it's welcomed. We've needed this sunshine and extra smiles in our home, and I hope we can keep them. Annabelle's smile is contagious, her curls are just to die for, the laugh brightens a room and her sister's admiration for seeing her happy is something you could never even believe. I have two of the most amazing girls on this planet and I am so proud that they call me mom.
Medical side of what's happening:
- I got a call from the allergist and the soonest she can see us is in September. Which was confirmed with our GI and is an ok time frame because we truly shouldn't be introducing foods until that time anwyay. The allergist was reviewing our previous allergy records over the phone with me and asked what type of protection we are using outside of the home. I was clueless. She then informed me that we need to be protecting Annabelle from airborne allergens outside, especially during this high allergy season, because these things are likely what is not allowing her EoE to completely heal and go into remission. How do we do this you ask? I have a box of baby face masks that she is supossed to be wearing outside. How that's going you ask? About as fantastic as you can imagine. They're sitting on the cabinet beside all the other meds, I'm certain their best use will be providing Mady with a true Doctor McStuffin's uniform to operate on her teddy bears in the playroom. I will keep trying though, but I am not going to make the child miserable, she's mad at the world enough. And in her defense, it's 90 degrees outside! We're just planning on spending plenty inside time and maybe a little less time at Bush Gardens this year.
- I am still pushing hard for some of the remaining medications that she needs to get approved from our physician and insurance. I broke down and picked up two of them because they were just necessary. Another med, I cannot even get my hands on until the physican finishes his work. I called the Compounding Pharmacy yesterday and they resubmitted the paperwork, then they called the doctors office to ensure they received it and left a message, two hours later I called to get an update but haven't heard back. I hate to be that annoying parent - but enough is enough!
- Social Services and Medicaid is a royal pain in my butt. That's a DAILY ongoing conversation that will probably never end. Vital though, so it's still worth each battle. I just wish they employed half way knowledgable people to do these jobs. It's like a circus.
- Speech Therapy had to be rescheduled from last Friday to this Friday. This will be the first week I cannot be part of the therapy so I will be curious as to how Annabelle does and if she's showing much progress. It's incredible to see the therapist working with her. There are so many things that she addresses that I just wouldn't have a CLUE to look for. Annabelle does extremely well working with her and I am already seeing improvement, it's absolutely amazing to watch.
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