In the process of finding out what was wrong with Haley I was frustrated with the communication channel to obtain test results. Looking back that poor communication was a blessing. Supposing results were reported to me immediately and the next test performed we would have found out about Haley’s brain tumor a week earlier (or so). I would have taken her by myself to the MRI with the baby because I would have been on my own. That would have been horrible only because I now know she does not respond well to sedation medication. I would have found out the test results and called Jeremy on the phone as I did, but this time he would not have been able to go with me to talk with the Neurosurgeon. I could have done that myself, but he would have had a very hard time hearing the news and not being able to be with us. Bad communication is a blessing to him.
For a while Haley has been saying “my knees are falling down.” We thought it was cute and funny. All our girls experienced growing pains and fell down about this age. We were in a store a couple days ago and she was walking fine then her knees suddenly gave out. Luckily she was by a display and could grab on without falling to the ground which is common. Does this have anything to do with the tumor? I’m not sure. What I do know is she falls down a lot more then ever these last few weeks and more every day.
We were at a new playground on Friday. She loves playgrounds and loves swings. Knowing she is sick makes me watch her every move and makes me want to protect her even more. As I was watching her, expecting her to be a monkey, she was falling, she was not as agile, she was not a monkey anymore. This was so sad to watch.
Haley has been my very verbal child. She said, “Mommy no nap” at 18 months. Not only does she know a lot of words, but she was very understandable. Lately it has been harder to understand her words. Things she used to say well like, “Uncle Joe.” She now cannot say on the first try. It comes out as “Uncy Joe” or “Monkey Joe” After correcting her she can say it correctly. She does not enunciate her words as she did. Sadly, she looks frustrated at times when she is trying to communicate. She asks for help with words like, “who are you?” I’m mom. “Oh yeah.” She points a lot more then before without using words.
We can only imagine her head hurts her all the time. We feel bad we didn’t know, but how could we? We couldn’t. Perhaps her constant crying and sometimes feisty attitude is because she is in constant pain. We have been giving her OTC pain medicine and she is much more pleasant. We wonder if after the surgery she will be more pleasant with less pressure on her brain. Only time will tell.
We are very thankful for those who have expressed concern to us or through others to us for our little Haley. My girls are in awe of all those who are thinking about their sister. We are grateful for all the offers of help we have received. We are continually thankful for the plans that are working out for this next week for our entire family.