It got pretty hectic towards the evening because we were trying to surprise Halea with a new phone and so I was trying to sneak around and get that working(which we never did get it working!)We had cake for Halea's birthday and opened presents.
We were finally close to going to be and getting settled around midnight and the power went out! Seriously? I just wanted to go to sleep. As soon as the power went out the oxygen concentrator machine started beeping. Are you kidding me? All of her accessories have battery backup except the oxygen. Tell me how that makes sense!? We remained calm, found a flash light and hooked her up to the portable oxygen tank. It was just a funny way to end another hectic day. Sigh....The electricity popped back on about 1:30am and we got her all settled on the oxygen machine again. Things we take for granted, like breathing and stuff. Not Tatum!
Tatum woke up at 4am, which is sometimes normal for her. We just sort of hung out together until around 6:30 Lance came out so I could start pulling everything together because it was picture day! I know you might be thinking (like Hayden was thinking) Didn't you just have pictures? Yes we did, but we might just have them every month! Do I have to keep explaining what is going on here? Anyway, I just wanted to go to the place that had taken such cute pictures of her in the past. I just needed some cute studio pictures. I am afraid that she is not going to be able to smile much longer. She was so smiley yesterday, today not as much. And, Hilary, sweet Hilary was in a three year old funk! She was ridiculous. She did not want to do anything that those poor ladies wanted her to. So we have Tatum who can't hold her head or smile and Hilary who is throwing stink eye at the two ladies every time they talk to her and the rest of the family who doesn't want to be there. It was pretty awesome! Tatum's seizures were still a little bit in her face so it was hard for her to smile. Darn it. These guys are pretty good though so hopefully they got some good ones. I will post them on Tuesday.
The rest of the day was a little crazy. As soon as we got home from the pictures I ran up the canyon with a few ladies for a girls camp meeting. Lance took Heidi and Halea to the daddy daughter bowling function. When I got home the kids told me that my friend from work had come and stocked our fridge and pantry with all of our favorites from Costco, and brought two DVD's for the little girls. One was YoGabbaGabba! Tate's favorite. My house was a little pitty when she came, hope she doesn't judge to harshly. So at least dinner was done for the day, yay!! Another tender mercy sent our way. When I got home from my meeting Tatum was sleeping with her little YoGabba Gabba stuffed animal that I found:
I have been a little sad the past few days because I was flipping through pictures on my camera the other day and I came across several pictures of Tatum before she got sick and some just a few weeks after she got sick and the difference of what she is now is startling. The brightness in her eyes is just different. It hurts my heart to see how progressive this hideous disease is. Alper's disease just stinks. I still know that there are lots of things out there that are way worse than what we are going through, but my heart is still sad. Even with the knowledge I have I am still human. I love this little baby and I was so set on her being my little buddy. I keep thinking what will I do when Hilary goes to school in 3 years? Oh I am sure I will find something to do with myself, I just wanted to be Tatum's mom.
Grateful for a good husband who is letting me do family pictures every month and not questioning me every time I bring home a new pair of jammies or stuffed animal etc. for little Tater bug.
Grateful for our Savior who suffered all things so that He would know how to bless us in times of need, and He has.
Grateful the daily reminders of His love for me.
Especially grateful for Tatum's smile and the early morning time that we get to spend together. I love serving her and taking care of her, what an honor.
Wooo, sorry so long today.