A tiny glimpse...

First, you can tell it's been awhile since I blogged... I had no clue that Blogger made a bajillion changes to it's format... oh well, bare with me if I screw anything up.

So I owe a few dozen updates to those who actually still come here to read... but today I am exhausted. I did want to share this with you. I contacted the Beads of Courage program to see if the boys were eligible. CHNOLA only offers BOC to oncology patients but we are eligible for the Beads From A Distance program. I am really excited because I feel as though this will give the boys something more tangible to express all that they've been through... and it's quite a bit for their 2 and 3.5 years of existence. I had a tally form with various categories and sub-categories to complete. They will each receive a certain bead for each thing they've been through... here is what I was able to tally for each of them:

Pierce

• 1 inpatient admit
• 8 nights in the hospital
• 1 NG tube
• 21 x-rays
• 4 times of being NPO
• 2 IV antibiotics
• 1 time on isolation
• 8 IVs
• 24 pokes for bloodwork
• 2 echocardiograms
• 2 EKGs
• 5 swallow studies
• 2 upper GI series
• 4 ER visits
• 1 ambulance ride
• 1 muscle biopsy
• 2 brain MRIs
• 1 ABR
• 2 brain CTs
• 1 upper EGD
• 1 lower EGD
• 1 sleep study
• 1 EEG
• 1 upper airway fluoroscopy
• 2 cardiology visits
• 10 GI visits
• 4 opthamology visits
• 9 genetics visits
• 7 ENT visits
• 4 neurology visits
• 6 orthopedic visits
• 5 immunology visits
• 4 pulmonology visits
• 2 IVIG infusions (well 1 is this coming Wednesday)
• 1 surgery
• 1 trip to AL for ortho consult
• 17 trips to Baton Rouge (1 hour away from NOLA)
• approximately 94 therapy sessions (speech and physical)

Brice

•  5 IVIG infusions (1 this coming Wednesday)
• 12 IVs
• 13 ENT visits
• 6 immunology visits
• 10 GI visits
• 3 pediatric surgeon visits
• 1 pulmonology visit
• 1 genetics visit
• 7 x-rays
• 3 hearing tests
• 15 pokes for bloodwork
• 3 surgeries
• 7 ER trips
• 2 inpatient admits
• 5 nights in the hospital
• 2 upper EGD
• 2 lower EGD
• 1 bronchoscopy
• 1 laryngoscopy
• 1 nasal endoscopy
• 1 NG tube
• 1 brain MRI
• 1 ophthalmology visit
• 2 urology visits
• 3 ultrasounds (1 abdominal, 2 renal)
• 2 foley catheters
• 2 upper GI series
• 1 swallow study
• 1 nuclear gastric study
• 21 trips to BR
• approximately 88 Speech Therapy sessions

After seeing all of this, it made me realize why the last 3.5 years have flown by... the sad thing is that this doesn't even encompass what seems like the hundreds of times we've been in the pediatrician's office for sick visits, well visits and childhood immunizations.

That's it for today --- if you have the ability, I really encourage (and would more than appreciate) you to make a donation the Beads of Courage program. You can do so here!

A post coming tomorrow about our scary day with Pierce yesterday... off to go release some stress while working out :)

finding words

It amazes me to have a child that has almost 40 words at {almost} 16 months old. Pierce is spontaneously acquiring more and more words! He says Bice (Brice), no (and he knows how to shake his head no), up, down, mommy, daddy, potty, poo-poo, Daisy, Duke, stop (top), Neo, kitty, duck, quack, moo, dog, uh-oh, night-night, go, out, bye, hop, PaPa, Elmo, woof-woof, ahh-ahh (monkey sound), boat, choo-choo, cat, bubbles, roar, yum-yum, ball, two, cat, blue, hello and hi. Pierce is able to communicate with us, with his brother, with his world. We don't have meltdowns, tantrums, confused looks because his parents have no idea what he is trying to communicate... once upon a time, with Brice, that's exactly what we had...

I remember it all clearly... I googled Early Intervention in hopes of finding out whether or not my babe was truly delayed with his speech. I was tired of people telling me "he's fine, don't worry," "boys talk later than girls," and "give him until he is 2 years old." My heart was telling me differently. I knew that he wasn't fine. And my brain fought my heart... hard. How could my baby not have words? We never used baby talk. We read books, we used descriptive adjectives, etc... why wasn't he talking? His peers were - some in two to three word sentences. I've prided myself on my intelligence. I maintained a 3.914 GPA while in college. I married a smart man. It hurt my brain in ways that I cannot even begin to describe. I felt like I failed him.

We had our initial meeting with Early Steps. He was approved to have an evaluation. Can he do this, that and the other... no, no and maybe. I remember feeling even worse after our evaluation. My irrational brain was in full overdrive... How have I failed my baby like this... when in reality, if I were to have listened to my rational brain, I would have known that they were attempting to establish a base and a ceiling. But I couldn't think straight... I really felt as though I failed him.

Brice had his third ear infection and we were referred to our ENT. Brice had a hearing test and he failed. After our ENT appointment I felt as though we had an answer for my baby not having any words. That certainly didn't make it sting any less when Early Steps called and confirmed that Brice was significantly delayed in communication and cognition. We had an answer and a plan of action. Brice received a PE tube in his left ear and had his maxillary and sub-lingual frenulums cut on April 13... one year ago today... my baby's body was given the physical opportunity to find his words. I can't thank Dr. Peltier enough.

In the early days of speech therapy, we were learning to use sign language to communicate. He learned signs rather quickly and we were grateful for having an opportunity to communicate his basic needs (milk, more, eat, etc). And then by his second birthday, he had a handful or words... not many, but enough to make me beam with pride. And slowly but surely, he really started to find his words. As days turned into months, he was able to piece two and three words together for sentences. He began to spontaneously acquire words. And then it hit us one day... Brice NEVER stopped talking! Some days, I find myself lost in thought while listening to Brice talk. I sit there and smile and think about how far he has come in one short year.

Brice had his one year reevaluation with Early Steps a little over a month ago... he no longer qualifies! She was beyond impressed with "his intelligence." I knew he wouldn't re-qualify and I was so happy because I know where he was one year ago... wordless. He still has a small articulation problem. We have three sessions left with our speech therapist. She believes that he will work through those in our last few sessions and will no longer need her help (note: we had considered continuing in private therapy with her). Our speech therapist is truly an amazing woman. She helped my baby find his words (in addition to helping my other baby as well) and for that, thank you doesn't seem to be enough.

My children have taught me so much and not just through this, but through every hurdle we've overcome with them. They've taught me that nothing is insurmountable. They've taught me how to hope when I thought hope was gone. They've taught me how to be more compassionate and less concerned about what others think. And most importantly, they've taught me how to love deeper than I ever thought was possible. And for that, I thank them.