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:
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.
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!