Meagan has had zero head growth since January... this is a double edged sword. We want her head to stay on the smaller side, obviously, to give her a better chance at "catching up" and gaining the strength to hold it up.... at the same time, we do want to see normal growth rate in her head size even though it's already large for her age because that means everything is moving as it should...and that her bones haven't fused yet.
Nonetheless, we kept working with Ms Susan...and kept working at home, everyday. Everyday I'd press on Meagan's shoulders and somehow work my body around hers to help her hold her head and try to make it a little stronger...a little more steady. Once Meagan got her glasses 4 weeks ago, I did notice the first obvious "progression" in her head control. Ms Susan, her PT, told us it may have alot to do with Meagan's feeling of balance - with the glasses, she is seeing a LOT more than she was...so she may feel a better sense of where she is in herself and her balance when we try to position her certain ways.
The last few weeks, Meagan has been kind of "blah" in PT...for lack of a better word. She always did well and seemed to be a little stronger each time, but the last few times I almost felt as if she had stalled or even regressed. And then my dear friend, Jenn, called me with terrible news - her mom had suddenly passed away after battling lung cancer. I immediately knew we would go to Virginia to be there for her, so we packed up the kids and made the 11 hour trip up.
While there, we were also able to see my parents, Brian's parents, and I was able to attend my Godson's Baptism...while at the same time getting some quality time with Jenn and helping her in whatever ways we could. I really liked spending time with my parents and in laws. And also enjoyed the time with my brother and his family because we don't get to see them that much. Our girls loved being around Uncle Nick (my brother) and Aunt Christine (his wife), and their son, my nephew, Timmy. I was really glad Meagan got a lot of time with Christine because she is extra special since she is her Godmommy. The last time she held Meagan was in the NICU so Christine was so excited to see how much she'd grown and changed. They got a lot of quality time together and exchanged a lot of smiles. But, because of the busy trip, hours in the carseat, and the long drive home, I didn't get to work with Meagan as often as I normally do at home.
We arrived home the middle of last week, and I was getting us back into our schedule and about to work with Meagan at our usual times.... but I noticed some of our kids seemed really tired and acted like they weren't feeling well. . Two 11 hour drives, hanging out with 16 cousins, and everything in between, I honestly wasn't surprised. Who knows where they pick up the germs they do... kids are kids and it just happens. When two of the girls started to have high fevers, I took them in to the doctor... turns out it was Strep, so we got them on meds. Of course, being the mom, normally we get lucky and have that "mommy immunity"...but this time I wasn't so lucky. I started to feel horrible on Friday morning and by lunchtime was absolutely miserable. Brian came home early and I got to rest.
Everyone was starting to feel better as we started the weekend. Tonight, after the kids went to bed, I was playing with Meagan. I thought it was a good time to start working with Meagan again and get back into our routine. I figured I would just do her exercise where I hold her sitting up, prop her head in a straight position and work on strength. It's one of the exercises she tolerates most, so I figured it was a good place to start. I positioned my hands and legs around her and got her into a sitting position, and then propped her head in an upright position. I moved my hands from her neck on to her shoulders... and Meagan gave me her surprise of the week - her head didn't flop!
I tried to then pick her up into a sitting position to see if she'd lift her head.... but her head just flopped....so I repeated what I did before. I held her in a seated position, then propped her head straight up and slowly slid my hands off her neck onto her shoulders......and she did it again -- she held her head in place! For about 5-10 seconds!! I grabbed my video camera and took a video of Meagan "holding her head up" for the first time! ***You'll have to excuse the shakiness of the video - I was trying to hold Meagan's body up, correct her head when it flopped, and take a video all at the same time... so parts of it are pretty bad camera work!*** I'm so proud of her though!! She held her head each time about 5 - 10 seconds before it would slowly fall. This is a big step for her!
I know Meagan has a lot of people praying for her - and for this we are eternally grateful. But I do have to end this post by acknowledging my friend's mom specifically with her passing this last week. Her name was Susan. Susan was a prayer warrior on many levels...and I know she prayed a lot for Meagan. She helped me so much last Fall in other ways too.... by giving great advice on how to handle the NICU from her own first hand experience, sending me random texts asking how things were going, sending small gifts for Meagan, and by praying for Meagan daily. She also raised her daughter, Jenn, to be an amazing person who has come to be one of my best friends....Godmother to one of my girls... like a sister to me. I would be lost without Jenn, but she is only who she is because Susan was her mother. I have no doubt that Susan will still be sending prayers Meagan's way ....... but now directly from heaven. So thank you Susan, for all your support last year. For your daughter who constantly supports me. And for being such a special prayer warrior for Meagan.
I know on nights like tonight, I am seeing prayer at work. No matter what doctors tell me Meagan won't accomplish...they just can never outdo the power of prayer. Put simply, prayer brings us closer to God....and with God, Meagan will accomplish....and continue to give me little surprises like she did tonight.