I am beyond exited that Thanksgiving is just around the corner. I can't wait to have a few extra days off to hang out with my husband and kiddos (especially after coming off of a 60+ hour work week last week), and to visit with my family. Excited for the food, too! And I just love Thanksgiving weekend, because that's usually when we get a Christmas tree and get all festive. I hope that everyone has a spectacularly fat and happy holiday.
Oh boy, do I have have so much to be thankful for. First off, my three Ramsey men (who are the light of my life) - thank you for being so fabulous. My husband is the Rhino glue in this family, thank you Barry for holding it all together, especially in these past few crazy weeks.. Thank you to my oldest son Weston, for being the caring, thoughtful, spunky wild child that you are. You make every day colorful and adventurous. And thank you to my little warrior peanut Curren for all the smiles and belly laughs that keep us all moving forward.
To my mother, who has been relentlessly supportive through the difficult times this past year has brought, thank you for your foundation. It may not have been actually possible to survive this year without your help. My children are so incredibly blessed to have such a loving grandma, who genuinely loves them for exactly who they are. You have made them so important in your life, and that is the greatest gift you could give them. Thank you for everything that you do for us. Thank you to my grandparents, Mary Jean and Rodney, who are the most amazing people on the planet. You have always put family first, and are such incredible role models. And thank you to our fabulous team of awesomeness (I mean therapists) who have pushed Curren so hard this past year and have become such an important part of our lives.
I am over the moon with the glorious week that Curren had last week. He was happy, healthy, and loving. But best of all, he had a huge milestone. He started actually pushing his legs in his little yellow pony walker. So much, in fact, that by the end of the weekend he was zooming around the living room from one end to the other. This is huge for this little guy, he is starting to figure out what his legs are capable of doing. It's been a beautiful weekend!
I also wanted to thank our photographer, Erika Iurovich, for the fabulous holiday pictures she captured of my little guys. These pictures just make me giddy, Love these two with all my heart, thank you so much Erika!
Everyone have a beautiful and blessed Thanksgiving!
A lot has happened in the past week or so. First, I can't even begin to explain the overwhelming support that my family has felt since we received the news of Curren's rare genetic syndrome a few weeks back. There are so many awesome people in this world, so thank you to all from the very bottom of my (exhausted) heart! There have been many ups and downs this week, and I want to share with everyone the good, the bad, and the ugly (but especially the good)....
The incredible news is that we have been able to make an appointment at Kennedy Krieger in the Neurogenetic Clinic to see two of the doctors that contributed to the recent medical publication on HIVEP2 mutations. There is a fabulous person that helped us get our foot in the door, and lots of recommendations from people to start there. We are beyond excited to talk to doctors that are familiar with researching HIVEP2 mutations. We are also trying to set up appointments at Johns Hopkins that would coincide with our visit to Baltimore. Fingers crossed....
On the topic of good news - here's a bunch more. Curren had his 6 month re-evaluation this week with Early Steps and he is going to be authorized for an additional session of speech therapy and occupational therapy a week. We are really looking forward to the extra help! Curren also had an appointment this past week to have new orthotic braces made, which is fabulous news because it means his feet are finally growing. We were also assigned a case manager through our insurance company this past week. She seems super fabulous, and I think she will be a great asset to us - as we very frequently have claims denied, and some of Curren's very best therapists and specialists are out of network and currently not covered by insurance. And we also had a initial appointment with the Scott Center for Autism this week. We're hoping that the behavioral therapy they offer will become available to Curren to help with some of his frustrations.
So, on to the not so good - we got a call from the preschool the other week that they were afraid Curren was having a seizure. He was playing in the gym and just fell over. His body went completely limp and he had a staring spell for a few minutes where he wasn't able to focus or look at anyone. On our pediatrician's recommendation, we took Curren to the local ER, where we had some really good, and some really not so good experiences. What we found out was that Curren's blood sugar was at 40 when we arrived. He also had very low CO2 levels, and was diagnosed with acidosis (his metabolic pH level was more acidic than it should have been). They had an awful time getting an IV in his body, and from this point began blood sugar monitoring every 1-2 hours (which was also awful, but necessary). Curren did magnificent in his CAT scan, he laid completely still as a statue, and the results of the scan were normal. The local hospital got in touch with our Neurologist at Nemours, and the verdict was that we needed to be there. Curren was transported by ambulance to Nemours, so that he could be in the best hands at the children's hospital.
It was great that we were in such good hands. What wasn't great was the fact that people kept coming in to our room every 30 minutes or so, usually to poke Curren. And when there weren't people in the room, his alarms were going off every couple minutes or so. I don't think either one of us got more than 15 consecutive minutes of sleep through the night. Curren began an EEG in the morning, to see if any more seizure activity could be recorded. His CO2 and blood sugar slowly stabilized throughout the day, and we saw no seizures. There was, however, a new area of his brain that showed seizure-like activity - this time it was his left temporal area (in addition to his left occipital area). At the end of the day, everyone decided that all the numbers were stable enough and we could go home. This was fabulous news, considering Curren was basically miserable in the hospital - between all the wires and the constant pokes, he was completely skeptical of everything and everyone in the hospital.
So on to more good news - we followed up with our pediatrician after the hospital stay and Curren's blood sugar was perfect. We don't really know if a seizure triggered low CO2/acidosis/low blood sugar, or if low blood sugar triggered a seizure. But either way, things have been much better since the hospital. We have been feeding this guys every 1-2 hours to be on the safe side, and things have been great.
Aside from the hospital encounter, it hasn't been the most wonderful of times. I am still trying to wrap my head around the genetic diagnosis we received a few weeks ago. I have been googling my brain out, and reading some scary things. I wish that life could go on hold for a few hours (or just maybe a couple minutes?) so I could get a chance to catch my breath and focus, but there is a 2 year old and a 6 year old, and a +full time job, and laundry, and a gluten-free/dairy-free diet prep for the week, and homework. I don't know what the future will hold. Will my littlest require 24-hour care for the remainder of his life? Based on the information I have today, it's probable. Do his genetic condition predispose him to some nasties? Seemingly so. But I have a fabulous smiling face, and that's truly all I need. I will go to the ends of the earth to find options to allow him to be his personal best. And that's the next chapter...
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I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.