Well family and friends….
We made it through our first major family road trip/vacation this last week.
It was SO good seeing Kevin’s side of the family! Only his parents and one of his sisters have met Annalise before so his other 3 sisters got to meet her for the first time! 🙂 (We missed the other siblings though and we hope that y’all get to meet her someday soon!) It was such a special time and we are so grateful that we had the opportunity to do it!
Annalise did extremely well for being in a car for about 18 hours one way. (Don’t worry- we split the drive up in 2 days both times. ;)) She slept the majority of the way. The times she was awake though, she was thoroughly enthralled with her new friend, the zebra. She played with that thing every waking second. Once she even fell asleep with her arm through the rings that are attached to one of the legs of the zebra (super cute :P).
On the way down to Florida, when we stopped for the night halfway, we noticed that her head was a little swollen and squishy. When you have a shunt and your head gets swollen or sunken in, that’s a very common sign of the shunt not working properly anymore. Needless to say, we called her nurse. Luckily everything turned out to be okay. Her skull bones actually moved and changed shape, which was causing the extra “squishiness”. It was just a positional change thankfully and now that her new skull formation has set, the swelling has gone away!
Other than that, we had no other problems or worries! As much as we loved being on vacation for a week and with family, it was still really hard being so far away from home and the normalcy of it all. (Funny how I call life with doctor visits/appointments on a weekly basis normal. Oh the life of a special needs mother. :)) We did miss the comfort of our home and all of her doctors being so close.
There was one night when Kev and I got to go out for dinner, just the two of us. We have never left Annalise alone with anybody since she was born. One of us has always been in the same house/building/etc. with her at all times. It was nice to have that alone time with the hubby, but let’s be honest. My mind was definitely not at The Bonefish Grill. We BOTH even found ourselves turning around in the car to look back in the car bed on the drive there and back. Luckily, Little Miss had a good time with her NaiNai and aunts! 😉
Most of the week, we just relaxed and spent time with family. We did take Little Miss swimming for the first time with her big rubber ducky. We took her to the beach for the first time (Treasure Island). (I have never been to Florida or a beach either so that was fun to experience it with my little mini me!) We celebrated her First 4th of July. We watched home videos of daddy and his family. It was just a great time.
Once we got back Monday afternoon, we were right back into the daily grind. Well, except for Monday night. Annalise (and Kevin for that matter) got to experience their first tornado warning/sirens! Thankfully, there wasn’t much except rain and wind in the part of town where we live. Annalise slept through the whole thing. 😉
Tuesday we met up with her physical therapist. She has been coming once a month so far and she was so impressed with how much moving Annalise does. Annalise is a wiggle worm. No, that’s an understatement. The ONLY time she is still, EVER, is when she is sleeping. She is constantly just moving when she is awake. You can barely even hold her anymore because she just moves and wiggles and just always wants to go, go, go. (It makes for a fun tummy time though!)
Wednesday her regular nurse came to check up on her. She was impressed with how big little miss has gotten. Even though she only weighed 12 lbs., 1 oz., she was still happy with how good she looked. All her vitals were good and healthy as well!
Thursday, we had an evaluation for little miss through CCVI (Children’s Center for the Visually Impaired). (“CCVI offers a comprehensive program, including individualized therapy, consulting services, and supportive family education. Services are provided beginning in infancy through our home-based Infant Program, and continue on with our Preschool & Kindergarten classes, preparing children for entry into the public or private school systems. CCVI staff includes professionals in occupational, speech-language, and physical therapies, as well as in the specialized instruction areas of braille, music therapy, and orientation and mobility. “ -https://www.ccvi.org/therapeutic-services-0)
It was through their evaluation that we learned that her eyes are doing two different things. So they are not processing the same thing at the same time. It takes her longer to visually process things. For example, when she feels a toy… she has to feel it several times before she looks over at it. If she hears something, eventually she will look at it… just not right away. They said that they see her trying to look at things; it just takes her longer to focus. She also doesn’t stay focused on things for long before looking away. Because of these things, she was accepted into the program; so we will be having a teacher/specialist from there coming at least once a month (more if we want) from now on. They will also help teach us what we can do with her on a daily basis to strengthen her processing. They already informed us of several tips and tricks and what toys to play with for now until the next visit so we are excited to get that going!
Next week we are visiting her neurologist for the first time. 😛 I’m actually not quite sure why we are going (LOL). We had it scheduled back around 3 months ago when her tremors were high. Now she hardly ever has them but better be safe than sorry, right?
That about sums up what has been going on in the life of Annalise Hope the past week or so! Now, I suppose, it’s that time that everybody is waiting for. The pictures! 🙂 (I actually REALLY regret not taking very many pictures at the beach. -Sorry Jawanda- you aren’t going to see toes in the water.- We were just living in that moment, taking it all in, and completely forgot to take all the cool, touristy pictures. -Sorry Annalise- you aren’t going to be able to see yourself in the ocean as proof 😦 .-)
Anyways…. A couple days ago, I posted on our Facebook page this:
“I’ll be the first to admit on here. It’s not always easy being a special needs parent. Usually we only talk about all the good things and the milestones our girl is reaching… But truth is. Some days are just plain hard. Some days it feels like we are taking 2 steps back instead of going forward.
Yesterday I was working with Annalise during her physical therapy time and later on that day. She tries SO, SO hard to lift herself and move around but she just can’t (yet). Sometimes it is SO hard watching her struggle when I know other kiddos her age are holding their head up, sitting up, starting to crawl, getting ready to be put on baby food, etc. It hurts. It’s heartbreaking to see her wanting to do it so bad but just can’t.
How can something be so heartbreaking but so overwhelmingly good at the same time???
Truth is. I am SO incredibly proud of how hard she does try. She “isn’t supposed to be able to move/crawl” with her conditions. (I just know that she will be able to do whatever her tiny little brain wants her to do with the help of our Father.) Now… whether that stuff happens soon… or a year down the road, I know that God is good. He did not have to entrust me with this much time with our sweet girl anyways.
So even though my emotions get the best of me at times… I could not be any more excited to see such a small but fierce girl trying so hard to accomplish such an “easy” task for other babies.
I am so overwhelmed by the goodness of God. I am so relieved that I can cast my cares and burdens on Him and He has it all under control. (https://m.youtube.com/watch?v=bKuAMmTqUbs) He IS the anchor of my hope.”
I am CONSTANTLY reminded of this song lately (the youtube link right above this).
“When fear feels bigger than my faith, and struggles steals my breath away…. When my backs pressed up against the wall, with the weight of my worries stacked up tall. You’re strong enough to hold it all…. This war’s not what I would have chosen but you see the future no one knows yet. And you’re still good when I can’t see the working of your hands. You’re holding it all…. I’m finding there’s freedom, when I lay it all on your shoulders.”
How refreshing. How awesome is our God? How undeniably good is He? I am SO grateful for such a loving God. I am so grateful that He gave us our Annalise Hope. He is good- EVEN when we can’t see it or don’t believe it.
I just remembered… I have never posted a pic of her MRI from BEFORE her surgery! So here is one:
Her facial features are on bottom left… side of profile. The bright white is bone. The light white is her brain and brain tissue. The black, taking up most of the head, was all the fluid. So you can see she has very minimal amount of brain/tissue. (Before surgery, when the nurses and doctor were looking where to exactly put the shunt, the nurses were completely amazed at how she was still even alive with that small amount of brain! :)) I would be VERY curious to do another MRI now that the surgery is done and see if it has “changed” since then!
HAVE A GREAT WEEKEND Y’ALL!!!! 🙂