Monthly Archives: August 2014

3 months post op and doing so well!

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!

IMG_3253.JPG 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!
http://www.gofundme.com/a32o1c

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Wellness checks

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Yesterday we had both the girls wellness check ups with their pediatrician. Austyn Jaynes 3 year, and Colbey Raye’s 16 month (with all the seizures and Seattle visits back around Colbey Raye’s 12 month mark we missed her wellness check so we made up for it now!). The appointments were supposed to be at 10:20 and 10:40, but the office was running a little behind so our visit did not begin until closer to 10:40. Back to back wellness checks, easy breezy right? 2 hours later we headed home!! I guess there was a lot more to discus than just the “typical” growth of your average child. Let us start with the easy one!

Austyn Jayne turned 3 in July, her wellness check was a hoot!! First off she is in the 94% for weight and 68% in height. She weighs 38lb and measures 38in, both the doctor and nurse commented asking her if she was a square and both times Austyn Jayne stood straight up, arms out wide and replied with a big satisfied “YUP!” Next we check her eyes, I could hardly stop laughing, she kept trying to peek in order to see with both eyes, and was purposefully saying every shape was a triangle because we told her there were no triangles on the board! Finally she mellowed out and has good average vision for her age. Next was the hearing screen. And I laughed out loud again! She held the muff to her ear and was asked to say “beep” whenever she heard a noise. Austyn Jayne decided a huge smile and nod at each noise was more effective. Again we coaxed her into cooperating and she began to say beep, still with a giddy smile on her face! All in all she is healthy, happy and 3! Dr Huang has deemed her sassy, chatty, curious, and to smart for her own good with excellent speech for a three year old. Well, when all you do is talk your speech should be darn good in my opinion 😋. “3 going on 30” Austyn Jayne has a clean bill of health!

Next up, miss Colbey Raye. Colbey Raye weighs in at 21lb 8oz (48%) and is 31.5 inches tall (68%). As the nurse measured her head (measuring only in the 26%) she says “boy you have lots of brain in there!” I couldn’t help but laugh and say “well, sorta, not as much as you think! She is a smart one though!” And the nurse was a little confused. She’s not our usual nurse, and was filling in so she didn’t know Colbey Rayes history. As for the rest of the visit with her doctor, it wasn’t as laughable. I always have a lot to say about Colbey Raye, after all this blog is pretty much all about her! But after yesterday’s visit I’m feeling a little lost in my thoughts. As the doctor and I talked about physical, cognitive and communication abilities I stressed my frustration with the lack of communication and lack of understanding that Colbey Raye seems to have. Doctor Huang looked at Colbey Raye, looked at me, and asked “Brittney, what are your expectations?” What are my expectations? Ummm… Is what I said. I laughed a little in order not to cry. What are my expectations? Was this directed in a way as to say, give her time you are expecting to much? Or to say push her harder? Or to just simple ask what my expectations are so that she could give me resources to reach them. I wasn’t sure what to say. So I said, well they are high! What mother wouldn’t want to have high expectations for their sweet little baby? I push her hard and work harder with her to achieve those expectations, but truly I do not expect as much as I am pushing for. After saying this I could tell that Colbey’s doctor wanted me to see that my expectations are high, and that I’m doing all I can to help get Colbey where she needs to go. But also reminded me that she is behind and has good reason to be. So we talked more, brain stormed a little and both feel that Colbey Raye would benefit highly with more intense therapies. She is going to get in contact with Colbey Raye’s therapists, and then is going to contact our insurance to see if she can make and headway in getting Colbey Raye more visits. I love our pediatrician. She’s understanding, helpful and she pushes extra hard to help Colbey Raye, keeping tabs and searching for resources. As for Colbey Raye’s bill of health, she is healthy, happy, growing and learning. She’s assessed at a 10 month olds level and her smile and new fake bashful look could brighten any gloomy day!

I still keep going back to the question, “what are your expectations?” And I still feel a little lost. What do I expect from myself? What do I expect from Colbey Raye? What do I expect from Austyn Jayne or Josh? I expect us all to love Colbey Raye, and treat her equally! I expect us to teach her, lead her, carry her and push her! I expect us to let her get frustrated, and cry when things are hard, and I expect us to cry along with her some of the time! I expect us to help her, but not to enable her, to push her to get what she wants, and not just to always hand it to her. And I expect Colbey Raye to be the little girl she was born to be! The happy, inspirational, stubborn, determined little girl she has always been a always will be! I expect her to be the loving, crooked smile giving, social butterfly she has been from day one! And I expect her to grow, walk, talk, read, write, etc… All accompanied but stumbles, falls, setbacks and learning how to get back up again! Time is our friend, and with a lot of work, effort, patience and love she will exceed all expectations!

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Disappointing swallow study

One short 20 minute test can sure cast a shadow over this sunny day. A good nights rest in our own beds after the long weekend at the cabin Colbey Raye and I both woke up refreshed! And I was excited for this Seattle visit because I was feeing confident that Colbey Raye would pass her swallow study! I was working on a completely different blog post as I waited outside the X-Ray room for Colbey Raye. That post will be saved for another day…
Colbey Raye did not pass her swallow study 😢. I know of all things this makes me sad, but I was so hopeful that she would pass no problem! But she actually did worse this time around than she did right after surgery. She was only aspirating with fatigue during her first swallow study, but today she began silent aspirating right away with the thing liquids, and even aspirated with half thickened liquids. So, no progress here with her liquid swallowing, but all other solid type foods she’s free to have! I’m feeling bad, as I was so hopeful and sure she would pass that I’ve given her sips here and there of things I’m drinking, and she’s had ice cream and un thickened medicine once or twice. I will not be doing that again until we have a green light to do so!! We have ordered more thickener and will have to order even more in a month or so to get her through until her next swallow study (2-3months), and for some reason our insurance will not cover “dietary” needs. Lovely I know, as we are using it for a huge medical reason, not just by choice. But the insurance company doesn’t care the reason for why it’s needed.
On a better note Colbey Raye is doing really well, she’s over the sicknesses, and is back to her healthy self. I do feel as though she has hit a little bit of a wall in her developmental jumps. She had been progressing so well and moving forward, but since she has been sick she has taken a break from learning new things and has resorted to screaming at me for anything the wants! She has not been using her signs as much, and she has no desire to learn new ones, such as please and thank you. She has learned how to verbally say “sister” though!! And boy is Austyn Jayne happy about that 😊. Her lack in communication ability is getting a little bit stressful for me. I am having a hard time with the constant squawking and yelling at all of us to get our attention or let us know she wants something or is unhappy sitting alone. But I am at a loss for how to approach it, and how to explain to her that it’s not okay to scream at us all the time for what she wants. She does not get it! But we are working really hard with her on it!
Colbey Raye has began to use her right leg a little more here and there, and is getting really good at bearing weight on her right leg while we practice her standing! A couple of weeks ago I began to notice a huge lack in her leg movement, and once I mentioned it to her therapists, the very next week Colbey Raye began to show off and move it a lot more! She wants to crawl so bad, but that right arm just is not getting the memo. She may just skip crawling all together and eventually just walk! I would not be surprised one bit if that’s the route she takes. Her arm has been moving a lot more to help with balance, but her strength is really lacking and she is still unable to bear weight. We are working really hard with her to be comfortable on her hands and knees to try and strengthen her right arm, but after about 20 seconds of weight bearing she just can’t do it any more. And this is forced weight bearing, she cannot push herself up at all unless she has help and support to get her into that position.
She is still my little side kick! Attached to the hip, literally! And wants mamma to hold her all the time. Her little scrawny self is becoming harder and harder for me to tote around. I love my hip hugger and I do love having her in my arms, but as the new baby grows in my belly it becomes harder and harder to carry the growing baby that is outside my belly!
Strength, dedication, persistence, are all things I’m praying to have through this time as we work on meeting goals and surpassing them. Time is our friend, and I’m thankful we have time to spend working towards a stronger Colbey Raye together. Even though I feel like time runs away from me daily I know there is always tomorrow, and we will pick up where we left off to face another day head on. How ever far off the goals may seem, each day bring us closer to achieving them.

A look into the past as well as the future

I have this new (new to me at least) app on my phone called TimeHop and it’s a fun app to have but the other day it popped up with a picture that took me back, back to the beginning and I couldn’t help but recap the events. So I myself took a moment to scroll back through the 4000+ photos on my phone to view these emotional events that had consumed my life this last year. I looked at all the pictures from hospital stays, I could tell you a million details about what went on during each specific stay, and I cannot let go of the feelings I felt during those days. Some just a day or two, others a week or more but each significant in our life and each have left a deep impression on my heart I will never forget. While looking at these pictures I came across one that stood out to me a lot, it was a picture taken at home so one I was not looking for intentionally. It may be hard to notice for many but for me it’s a stamped moment in my head I will never ever be able to forget. This picture captured a moment I was not trying to capture. If you follow me on FB or IG you know that Colbey Raye is usual full of smiles! And I remember this day way back, trying to catch one of her big grins and I caught something else. The face she was making was the face she always made at the start of a seizure, I snapped the picture and realized what was coming, so I switched over to video to catch the event on camera.

20140801-131757-47877275.jpg I have a bunch of videos of Colbey Raye seizing, and I’ve re watched some of them in the past, but after seeing that picture I did not want to view any videos of the sort. I can replay the events so vividly in my head, there is no need to view them on my phone. Today makes 2 whole months Colbey Raye has been seizure free! Everyday forward without a seizure is a record breaking day for Colbey Raye! She has had a cold (over 4th of July weekend) and she is just getting over a 103 fever this past week. Prior to her most recent surgery both of these events would have sent Colbey Raye into uncontrollable seizures, a hospital stay, and most likely more medication. As well as tests, meetings, different options to consider and the list could go on forever. I’ve been a little edgy this week, worried the seizures will return, watching Colbey Raye extra closely, staring at her through naps and jumping at the sight of anything “funny” looking. But I couldn’t be happier to anounce that there have been no seizures, no seizure like activity, and no real issues! This fever has set her back a little bit, missing PT and Speech this week as well as being to tired and emotional to really participate in OT, but she is still seizure free! She has been more off balance, falling over while sitting, something she has not done in a while, and she has been moving her right arm and leg much less the last few days. Also her facial weakness has been worse again since the fever, her cheek is puffy and droopy and her smile and eye are back to her very noticeable “pop eye” look. Hopefully she will recover quickly and be back to her determined self again soon, with a little extra rest and time. Her OT wasn’t surprised by any of this given that she had such a high fever for a few days, and is very certain Colbey Raye won’t take long to adjust back to making good progress soon! We will be working extra hard at home to give a lot of input to the right side, arm, leg, mouth, all of it trying to help stimulate the desire to move. Because of the fever we had to cancel all of Colbey Raye’s follow up appointments and now have had to reschedule. A bit of a pain, and now a few added extra trips to Seattle but worth every mile driven to ensure Colbey Raye’s recovering right on track! The lists of questions are piling up, so I hope our surgeon is prepared for the upcoming visit with us 😋. This next week we see the ophthalmologist and speech therapist for Colbey Raye’s swallow study. Please pray she passes, thickening her liquids is not hard, but our insurance will not cover the cost of the thickener so we are really hoping to not have to order more.
As for the rest of us here in the Smith house, Austyn Jayne is wanting to help Colbey Raye learn so badly! She is her little cheer leader and claps whenever Colbey Raye does something (old or new) and will sit and play with Colbey Raye’s arms trying to teach her to move them. Austyn Jayne has also informed me that she only wants Colbey Raye, she has no desire to have another sibling and thinks Colbey Raye should be my only baby! She adores Colbey Raye so much I think she feels how I felt when I found out Austyn Jayne wasn’t going to be my only baby any more! I remember being worried abut loving my second (Colbey Raye) as much as I loved Austyn Jayne, and boy can ones heart grow massively! I know Austyn Jayne will just love this new little bundle so much, as will the rest of us. With all that’s gone on the past few months I’ve hardly thought about the fact that another Smith is joining us soon, really soon!! Just 3 more months and I’ve hardly put any thought into it. Time for this momma to start getting attached to the idea of having more kids than arms, and two that will be needing to be carried every where! I’m worried Colbey Raye will have a hard time adjusting to a new baby around, she’s my hip hugger and constant companion every where I go! It will be an adjustment for us all, but I think it’s going to be the biggest adjustment for Colbey Raye, our baby is being bumped to the “middle child” slot, and she has no idea what is coming!! She will love being a big sister I just know it, and Austyn Jayne will too x2!!! Josh is the most excited for the baby, he talks about it all the time 😊, and says he can’t wait to have another tiny thing to snuggle up with. There will definitely not be a shortage of snuggles around here soon! Thank you all for the continued prayers, support and love. We are blessed abundantly in so many ways!
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