Today marks the 3rd month since Colbey Raye’s left functional Hemispherectomy. It is a little hard to believe it’s only been 3 months and it’s also hard to believe that it already has been 3 months! These three months have been such a huge blessing for Colbey Raye and for all of us here in the Smith house. Colbey Raye has made amazing cognitive progress and we have learned to relax a little, just a little, and not jump 10 feet at the sight of anything “odd” looking. I do not know if the worry will ever go away, or if my mind will ever fully relax when she is sick, or over tired, or over stimulated, I will probably always have a little question of fear in the back of my head and the what ifs will jump at me here and there. But for now she is still seizure free, learning daily and growing up into such a funny, charming (seriously scary charming), independent, loving girl!
Yesterday Josh and I celebrated our 4th wedding anniversary. We went to dinner, watched a movie and spent some much needed time together children free! Oh my gosh was it different 😋. Not only did the girls go to Gama and Papa’s for a little hang out time, they both, yes both stayed the night! Three months ago the thought of letting Colbey Raye sleep over any where but in a place I was just steps away would never have crossed my mind, and last night I let her stay, all night, away from me. Nervous, yes, worried, yes, but I felt comfortable and okay with it all, a feeling I have not felt in so long! Even leaving Colbey Raye for 2-3 hours has always scared me. I can count on one hand the amount of times I’ve left Colbey Raye with someone other than Josh or I and every time I would worry, sometime I’d worry so much it was hard to enjoy the time out. But last night was different, I was relaxed, my phone was in my purse the whole night and I never panicked! Time heals all wounds, and this is the beginning of a healing proses I don’t think I ever thought would come. I do have to say though, I missed my baby like crazy!!! But we enjoyed our time alone, and I’m so excited for my girls to come home to me this morning 😍.
As for Colbey Raye and her progress. We are working very hard on her right arm strength. Her OT and PT are both happy with the progress she has made the last 2-3 weeks but her OT and myself as well, are becoming a little frustrated (for lack of a better word) with the lack of awareness Colbey Raye has to her right arm. We know she has muscle strength, and pec strength but she is just not making the connections she needs to make to use those muscle strengths to her advantage. For example, if you push her over to her right side she will put her right arm out as if to catch herself (she’s still not strong enough to catch her self but she tries) but if you place her bottle in from of her (her favorite thing on earth!) and restrain her left hand she does not move her right arm at all. The ability is there and the reflex connection is there, but the connection between arm and brain on the desire to move is not. Time, time, time, I just need to remind myself it’s a time frame and Colbey Raye will get there! We are going to get her fitted for a weight bearing brace for her right hand, it is a process so we are hoping to start working on getting it made soon! She’s been wearing kinesio tape on her right arm and shoulder to help with awareness, it has helped a little! Her right leg is doing really well! She likes to be on her knees, upright, and she loves standing at a table, with help. She uses her right leg to assist in her turning and in her attempts to butt scoot across the floor. She will only butt scoot about 2-3 inches if she sees something she absolutely needs to have 😋. She’s been sitting herself back up, but only in her crib. My theory is, she is pulling on the rungs to get all the way up, but I’ve yet to witness the event so I cannot say for sure! Her core strength is great! Her balance is getting better, Austyn Jayne can be highly thanked for that! And her vissual compensation is amazing! You would never know she had a visual field cut.
After Colbey Raye’s first surgery in December 13′ we saw huge leaps in her physical development, but her cognitive had always been farther behind. After her Hemi in May, it’s been quite opposite. Her physical development has been hindered, but the jumps she has taken cognitively are amazing! To think, that just three months ago Colbey Raye’s cognitive was that of a 6 month old and after such a traumatic brain surgery she is already at a 10 month level and progressing daily! She never understood the difference between a happy tone, or sad tone, she thought every voice flection was exciting and happy and she would laugh when others cried, but now she can tell the different. She will sometime make a pouty face or even fake cry when someone else around her is crying. If I she is doing something she shouldn’t be, like pulling hair or eating rocks, she understands when I sternly say “no no” and will look down with a shameful, bashful face and then turn up to try and kiss the scolder! It’s heart throbbing actually and I can never be upset with her because it’s just to adorable to be upset with! She understands praise, and wants to be applauded for everything she does! Another adorable face accompanies applause 😊. In just the last week we have began watching baby signing time once a day, and she has already picked up on “milk,” “give me,” “eat,” and her “please” and “thank you” still gets mixed up but she is trying! She verbally says “dada” still, and still calls me “dada”, unless she’s extra frustrated and then a “mama” might come out now and again, but never on command! She now says “sister” and says it when asked to, this makes Austyn Jayne beam and every time Austyn Jayne exclaims “did she say sister?! All by herself?!” I say yes and Austyn Jayne runs up give Colbey Raye the biggest squeeze and says “oh good job Co Rayzee!!” Melts my heart every time! They are such good buddies. These two play together all the time, and Austyn Jayne always wants to drive Colbey Raye in her new gator or push her in the swing. Austyn Jayne wants to help Colbey Raye learn how to do things, and boy can Colbey get into a for fit throwing mood when Austyn Jayne is trying to help!
it’s sweet, but a little difficult for Colbey and myself to deal with some times.
Other upcoming events for Colbey Raye, she will be receiving and ultrasound on her right leg soon. Her right foot turns very dark purple, and is freezing to the touch. Neurosurgery says it should not be connected to her surgery, after talking to many other Hemi parents I believe it is, but we will still do the vascular work up to make sure there are no issues there. September 8th Colbey Raye will see neurosurgery for her follow up, receive an MRI, as well as see her neurologist. At this appointment we will discus medication changes and see when is the best time to start weaning meds, hopefully soon! Also coming up, August 26th at the Schilter Family Farm there will be a fundraiser held to help Colbey Raye and friend Cheistian Coate on their long road to recovery! It’s a family fun day with a spaghetti feed and raffles. Join us and being a friend! It will be fun for the whole family. https://www.facebook.com/events/297883133717465/
Thank you for all the continued help, support, prayers and love! We are blessed by it all so much!