So, Samoo … Yeah, he turned 3 in February and oh my gosh golly gee whiz!? This kid skipped over the terrible twos and headed right for tornadic threes! My sweet, cuddly boy went from a snuggle bug to a PowerRanger/Superman/Dinobots combination. Wow!
This kid, who a year ago was diagnosed with mild cerebral palsy and was told he would need to be active forever to prevent him from becoming too limp in some areas and too rigid in others…This kid who had 3 different therapists coming to the house weekly and all of us kept saying, Something is wrong, we just can’t put our finger on it…
Yeah, he has overcome whatever was causing his obstacles and is a wild man now! He is all over the place, full of energy, and still absolutely as sweet as can be. God took away whatever it was we were dealing with and now he’s just perfect!
Pouty…Oh, my sweet and sassy Pouty… Let me start with giving you a brief synopsis of what happened and when. This is copied from our CaringBridge site that we really don’t use anymore.
Pouty was sick just before her 4m well check, but we decided for Daddy to take her anyway. She got her 4m shots and came home. By the time I got home from work that day, her fever was over 102 and she was covered head to toe in a rash. I took her to the ER where she was dx with roseola and ear infections. They told us to follow up the next day with our ped. We took her to our ped and she said she did not have ear infections, but did have roseola. Within about 48 hrs, she had a weird “staring spell”. I really thought it was some weird baby thing, reflux, ignoring the chaos that occurs in a house with 2 older siblings, etc. A couple days after that, her daycare called me and said she was a bit grey, unresponsive, and just … odd? She was breathing fine, her heartrate was fine/slightly elevated, but no matter how they tried to gain her attention, it did not happen. It had lasted about 6-8 minutes and then she fell into a much deeper sleep than normal for her at daycare. I rushed her to her ped’s office again and by the time we got there, she was perfectly happy, normal, etc. The ped referred us to a neurologist and that was the beginning of our journey with her…
So, fast foward … We went through a good bit of testing. It was finally determined she had an unknown seizure disorder, but during that testing we also found a syrinx in her spine. So, that was followed at Duke by an amazing neurosurgeon. It wasn’t, at that time, really causing many issues and nothing that we could not handle at home with motrin. She had several MRIs and then from there they were to become annual.
Well, the next annual MRI was due and we had moved to SC. When she saw that neurosurgeon, he asked a full history and then did an MRI. He was very concerned that she may have a tethered cord based on some symptoms that we are no longer really able to control. So, again, we started a battery of tests. In the meantime, during the appointment to discuss the MRI, she had her first real seizure, that was undoubtedly a seizures in over 2 years. Yes, while sitting in his office! So, he also referred us to neurology. He did that for two reasons – one, he wanted her to be seen for the seizure activity, but also he wanted a second opinion because by then he had pretty much ruled out the tethered spinal cord as the sole cause of her problems, but now his focus had switched to the other end of her cord … her cerebellum.
We were referred to urology for some studies, and of course we had an appointment set with neurology. Everything with urology checked out well which solidified his thoughts that her spinal cord was not tethered, but he said it is still a very, very small possibility.
The neurologist immediately set us up for an EEG that showed Pouty is having some seizure activity (this was a relief for me, until now the diagnosis had only been based on parent/caregiver observation because it had never shown up in other testing). She also wanted us to have a sleep study to see if there is any ‘general apnea’. This is not the same as the every day sleep apnea. This is, from my understanding, when the brain essentially forgets to breathe at night when the person is asleep. Regular sleep apnea is usually caused by some sort of obstruction.
One thing about the visit to the neurologist… She said, in a very loving and caring way, as we walked towards the front desk… Mama, I really think she needs to have the surgery with the neurosurgeon. I knew it was an extremely high chance, but to have the ‘2nd opinion’ say it …
So, tonight we are in the pediatric sleep study clinic and she is all wired up and ready to go … to sleep! haha Really, she was very good about it. With the sensory issues she often has, I was concerned she might have a hard time with the facial wires and tubing. While she isn’t fond of them, and was almost in tears over the oxygen cannula, she is leaving them alone and not letting it get to her.
From here, we will wait (approximately 2.5-3 weeks?!) to hear the results of this test. If there is any problem, we will see the sleep doctors and they will determine how to handle the apnea so that she can sleep safely. If there is no problem, the neurologist will call us back and let us know that. Once we have been cleared by these two doctors, we are headed back to neurosurgery.
The neurosurgeon, and confirmed by the neurologist, is concerned because the two tonsils on each side of the cerebellum are swollen. This puts extra pressure on her brain and then causes some other issues, some of which are painful. This is called a chiari malformation.
Now, all of that said … Pouty has not slowed down one single bit! Girlfriend is still going 100 miles a minute. She still twirls and spins through the house. She has started running and loves it! She likes going to soccer every Monday with Spike because she runs laps around the field. She has run … a lot! She has even decided she wants to be like these two little girls! (This is not up for discussion or debate…I do not foresee her running a marathon at 10 years old!)
She is still my perfect princess and I know God will take control of all that is going on with her and she will be just fine!
Yes, I do still have two other squirrels to update about, but they’ll be later this week. For now, I’m heading to bed with visions of sugarplums dancing in my …. oh wait, wrong time of year… I’m going to sleep with the peace and assurance that God is watching out for each of my beautiful, and sometimes rabid, squirrels.
Children are a gift from the LORD;
they are a reward from him.