Monthly Archives: September 2014

Amazed

Today marks 4 months since Colbey Raye’s functional left hemispherectomy! How to sum up my feelings in one word? Amazed. Just four months ago Colbey Raye was having daily seizures, she did not understand much of anything we said to her, she was nonverbal, sleepy, and her communication abilities were pretty much non existent. Today, 4 months later my little sweet innocent seizure baby is almost 4 months seizure free! She communicates by signing and with a few words and verbal cues! She understands what I am telling her (simple commands), she plays peek-a-boo, and today she was holding my cell phone by her face and said “ha”. She no longer needs a set scheduled, napping multiple times a day, and can be happy and content with just 2 naps most days. Her stamina has doubled and she can now last through an entire PT session without shutting down after 15-20 minutes! She is still sleepier and runs out of steam faster than most her age due to medications, but she is no longer worn out all the time due to seizures. Amazed! Amazed that my sweet 17month old has progressed so well cognitively with just half of her brain. Amazed by the determination and courage my baby girl has shown through all of this. Just purely amazed.

Every day I am thankful for seizure freedom. I pray that her seizure days are over forever, and we are so blessed by every day that is free of seizures. But, there is always a but right? I still jump and the sight of something “off” and Josh does too. Last night Colbey Raye sneezed and I was just trying to get her to look in my direction so I could see if her nose was snot covered and just with the tone of my voice Josh jumped and looked at Colbey Raye. Fear? Yes, it’s there, it’s real and it is a constant battle. My tone, Josh’s tone, a moment of zoning by Colbey Raye can send us into a small state of worry. Colbey has had a bad cold the last few days, 4 months ago she most likely would have been hospitalized due to severe seizures caused by the cold. I am amazed still that she’s made it through the worst of the cold and no seizures! But Still, whenever Colbey Raye is sick my worry is heightened. In the middle of the night last night Colbey Raye woke up, she was kicking her legs and her right arm was even stretching out, I panicked a little and stared at the monitor for a few minutes, she was pushing on her head, she started turning a little, grabbing her feet and searching for her bink, she let out a big yawn, finally found her binky and went back to sleep. Maybe a head ache? And a stretch, is all it was, but I hardly slept again the rest of the night. Why? Because even though it was not a seizure, the fear still sits deep down, and when that fear is resurfaced you relive all those sleepless nights, all those real seizures, all those moments turning to look over your shoulder every 30 seconds to make sure the baby is okay. I am amazed that the memories are now what haunt me, and not the frequent visits from seizures. I’m amazed but the strength and support that surrounds our growing family, and am amazed by the miracles God has worked in all our lives. Miracles do happen, and I’ve witnessed more in the last 16 months than ever before!

MRI, neurosurgery follow up, ultrasound and neurology

Yesterday was a busy day! First appointment began at 8am, and the last was scheduled for 10am, and we made it on time to all 4! Fewwww… We went down, up, down and back up and Colbey Raye was such a trooper. And what a blessing to have my sister McKinsey tag along to help entertain Colbey Raye while I got to talk to surgeons, and Colbey Raye’s new neurologist.

First, the MRI and neurosurgery. The two went hand in hand, it was a heist MRI and only took about 5 minutes. When they called Colbey back I went as far as the door, with baby number 3 on its way I wasn’t able to go in with her. As the nurse took Colbey Raye from me she smiled and waved bye to me, what a sweetie! I know she would miss me but goodness she is one social butterfly and goes to any one without a fuss, she would let someone just take her home with them. After the MRI we headed up to neurosurgery to see the results and talk about Colbey Raye’s recovery and progress. I had a few questions but before I could get to my list we looked over the MRI, and the results were not quite what I was expecting. Here we have the MRI results taken about a week post op:

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And here is the MRI picture taken yesterday:

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There is quite a bit of a difference in the amount of fluid filling the missing areas of Colbey Raye’s left hemisphere. Fluid is supposed to fill the void but it is not supposed to increase over time. After seeing this I skipped the first few questions on my list and went strait to my concerns about Colbey Raye possible experiencing more intense head aches. I explained what has been going on and why I am sure she is having more headaches, Colbey will grab the left side of her forehead and push hard on it, sometime hitting her head with her hand or pulling her hair. She leans her head into her hand and rubs her left eye and forehead as if she is uncomfortable, but she never cries about it or seems to be upset when doing this. After hearing this and seeing the MRI results the attending neurosurgeon (we were not able to see Dr. Ojeman as he is on sabbatical) wants another MRI in a few months unless other symptoms such as excessive sleepiness or vomiting occurs, then Colbey Raye will receive another MRI ASAP to rule out intracranial pressure caused by the gradual increase of fluid in her brain. Huge prayers this does not happen and that her fluid build up stays the same as is and does not increase anymore, we want to avoid the need of a shunt so badly. Other than this discovery all is healing amazingly well and the surgeons are happy with her progress. Discussing the usual, tumbles, falls, head bumps and more, no contact sports and extra cation when doing a number of childhood activities all while giving Colbey Raye the freedom to learn and grow amidst all of these obstacles. She is a tough one and loves to make people laugh! As a result of this she still finds pleasure in throwing her head back. She did it once last night, hitting her head on the hard wood floor and it hurt her head pretty bad, she cried and grabbed her head while coughing and gagging from the pain. How to teach her this is not okay, I have no idea 😕, I would have though pain like that would stop it, but again tonight right as in sat her down she went to do it, luckily I caught her this time and no pain was involved. How to explain that to a 16month old is hard to figure out.

Next we met with Colbey Raye’s “new” neurologist. He is new in the aspect of clinic visits, but he has been the one following Colbey Raye extremely closely ever since March when we decided to put her through the second surgery. He knows her well, visited her almost daily while recovering from surgery in May and he has made such a difference so far in helping us push for the goals we wanted to reach and he especially had a huge impact in helping get Colbey Raye approved for her hemispherectomy. It was nice to see him again, and he is also happy with where Colbey Raye is at. He is actually thrilled with where Colbey Raye is, 3 months seizure free! Who wouldn’t be happy with news like that?! I was hoping to maybe start the process of weaning off one of Colbey Raye’s anti seizure medications but Colbey Raye has had a few episodes where she is extremely shaky and a little out of it, she’s only had 4 episodes like this, all are upon waking from naps and last about 20 minutes. Nothing to concerning at the moment, cannot say really what they are from, or if there is any link to seizure activity but to be on the safe side Dr. Owens would like to wait until she has made is 6 month seizure free before adjusting any medications. We are so happy with our 3 months of seizure freedom so far, and so impressed with Colbey’s progress there is not huge rush to wean the medications. But we do want to wean her, side affects from long term medications can be harmful, we will be patient though. Dr. Owens let me know that he expects Colbey Raye to have to be on one, maybe two anti epileptics for the remainder of her life but that we will give her the chance she deserves to be medication free! It will be a process weaning her, but one we are excited to start on!

Finally the ultrasound. I have not gotten the final results, but from what the tech explained yesterday there is not huge reason to be concerned right now. The blood flow in Colbey Raye’s right legs arterial vain is less than in her left. Because there was a difference in the blood flow the tech went all the way from Colbey Raye’s toes up to her heart to check for any signs of clotting or further problems. None were seen, by her, and I have yet to get a call from the person who read it later and wrote up the official report. No news is good news right? If we haven’t heard anything by Thursday I will give the doctors a call to check on the results. But for now, socks, rubs, and warmth will be our attempt at keeping Colbey Raye’s right foot from turning so purple, especially with the change in weather. Colbey Raye did great for all her appointments. She danced to the Doppler reading on the ultrasound and tried helping the tech out with the monitor. She was talking and playing for the first half and the fell asleep and stayed asleep for the second half. It was a long morning for her, but she held strong! You can just see the exhaustion in her face in this picture.

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She tried so hard to stay awake for the whole thing, I love her social, need to be the center of attention little personality 😍.

This has turned into a longer post than intended, and my chance to hop in bed early has far passed! So I will end on this little note, we all have a purpose, we all have a road to walk and a cross to bear. No ones road is easier than the next, the grass is greatest in your own back yard if you take the time to nurture it! “Bear patiently the cross” you were given and live it to the fullest! Some days are dark but when you push though the sun shines so brightly the warmth is amazing! We are feeling the warmth around here, we are feeling blessed to be on the other side of surgery, blessed to have made it 3 months with out a seizure, and blessed daily by the happiest, sweetest, most inspiring little angel imaginable!

Communication is key!

Yet again I’ve been trying to get a post up! Between the lack of time and energy and our busy end of summer schedule it’s been hard to sit long enough to concoct a post, let alone sit for a breather! But here it goes, if this goes up on the blog then amazingly enough I found just enough time between events to put it all together!

Last week on Tuesday the Colbey Raye and Team Coate fundraiser took place. It was a lot of fun for the whole family! We got to spend time visiting with family, introducing Colbey Raye to new faces, and Austyn Jayne had so much fun jumping in the bounce houses, having her face painted and eating lots of yummy spaghetti! The turn out was amazing as well! So many people came to enjoy and support these two kidos, it was moving, exciting and amazing to see so many happy to help. A huge thank you to all that volunteered, and to the Oaklands for coordinating, planning, and heading up the whole event!

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Colbey Raye is learning more and more every day! This past week+ she’s taken a leap in her communication abilities! She now knows a handful of signs, and is perfecting them daily. Her favorite is “milk” of course! She signs milk when she wants a bottle, or when she wants what someone around her is eating or drinking. She has also started saying “mmmm” (for more) when she wants more food, likes what she is eating, or what’s the food someone else is eating! She really likes herself some food 😋. Another sound that is associated with drinking is “ahhh,” usually only used when she wants what I am drinking! All of these are new and a huge help in understanding the needs of Colbey Raye! The squawking still takes place often, but now I can ask her what it is she wants and she can sign or make sounds to help us figure it out. Along with signing milk, Colbey Raye also signs please, thank you, more, all done, eat, and if tired she will nod her head rapidly when you ask her if she is ready for bed! She was confusing herself and would sign every single sign she knew when she wanted something, but now she has gotten them pretty much figured out and is yelling at us so much less. I think this has made all of us a little less frustrated and much happier. Austyn Jayne has been signing also, so we give praise to both girls often 😊.

Still enjoying being the center of attention Colbey Raye responds very well to laughter and applause! But she still could care less when scolded. Colbey Raye pulls her sisters hair, and does not care to stop! She throws her food onto the floor and the only thing that fazes her is when we take the rest of her food away! All normal, one year old things to do! But her newest trick has me worried. we are trying so hard to stop this but she has found a huge enjoyment in throwing her head back hoping someone is behind her to catch her. She will do the head throw over and over again when Austyn Jayne sits with her and Austyn Jayne usually catches her, but there have been a few times where no one has been behind her and she has hit her head pretty hard 😕, or conked heads with her sister. Resulting in tears, and then more head throwing! How do we stop this?! I know it is give her a head ache, she will hold her head a lot after the bonk, but still continues to do it. I would hate to have Austyn Jayne stop holding her, but that is usually the start of the head throws. The girls LOVE to sit together, they laugh and play and it’s adorable, but I’m worried about Colbey Raye hitting her head so much. Tough times…

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The butt scooting has begun! And Colbey Raye can get from room to room scooting around on her bottom. She pulls with her left hand, and pulls with her left foot while dragging her right arm and leg behind her. It’s cute to watch but sure looks like a lot of work! She is happy being able to move around a little more and I am happy for her, she’s a strong willed little girl, and I’m so proud of her determination. Her right leg has begun to show a little more strength, and she has been using it a little bit more. Her right arm is still kind of there, toting along at her side and resting on her leg as she plays. She has been holding it up more, and her wrist isn’t as floppy as before, the kinesio tape is helping her wrist a lot. Working, working, working hard to strengthen that right side!

Miss Raye has come such a long way, over 3 months post op and 3 months seizure free as of yesterday! September is here, new things happening and we (I) and so excited for fall! Austyn Jayne is starting preschool at home, Colbey Raye is starting a new therapy schedule, and we finally get to see the surgeon for a follow up next week! We will be discussing medication changes soon, finger crossed we can start going down on a dose or two but we will see! Excited for this time in our life, looking back I don’t know if I ever was able to truly imagine life without seizures. I’m still jumpy at the sight of something “off” and worry myself when Colbey Raye stirs at night or stairs off, but a difference going 3 months with out a seizure makes! I’m enjoying this time and trying so hard to soak it up, praying the seizures stay away forever and that Colbey Raye continues to make leaps and bounds in her development. We all grow everyday, and we are all enjoying this happy time!

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