Little G did awesome today! We arrived at the hospital and despite not eating for almost 12 hours, he wasn’t furious…what a trooper.
Putting in his tubes took about 5 minutes – his ENT let us know he had quite a bit of fluid in both ears, so this should alleviate his ongoing ear infections. Hopefully!
The downside was his hearing test, or ABR (auditory brain stem response). His last ABR reflected hearing loss in his right ear, and perfect hearing in his left. 6 months later, and this one reflected hearing loss in his LEFT eat and perfect hearing in his RIGHT! WHAT?? Not what we were expecting – the hope was that the right would come back as fine, and we can attribute the prior issues to fluid and be done with it. Now, things are a bit more complicated because they had just drained his ears, and still there seems to be hearing loss.
We know there are no issues with his Nerve of Hearing which is a great thing, so that leaves us with issues with the bones in his middle ear or fluid. I am no doctor, but seems to me if there were problems with the bones, they wouldn’t have disappeared – bones don’t miraculously change! (as far as I know!)
Now they want us to do another ABR (which means sedating again). At this point, I am in no hurry – we feel like he can hear, and the audiologist confirmed again she does not have concerns about his speech and language development, which is the main concern for solving this at such a young age.
We will see the ENT in a few weeks and get his thoughts…again. Just wish it was a bit more simple than the ongoing inconclusive results!
Early Childhood Intervention – ECI is a statewide program for children, birth to three, with disabilities and developmental delays. While in the NICU, ECI came up fairly often, as well as First Steps, a high risk follow up clinic. It was all a bit confusing, but we wound up with private therapies with First Steps (occupational and physical). At our most recent visit to First Steps, at 6 months, they recommended getting G involved with ECI – they want to get his “case” established with them so we he transfers to the school system, which disabled kids often do at 3, he already has a case manager and the transition is easier.
This past week ECI came out to see our little guy… they agreed he should stay with his current therapies, and they will see him for speech therapy to help G with his eating. While he can get some food down, he gags at times and surely can’t eat like most kiddos his age. His new therapist will start in a few weeks and will come every other week – BUSY little G!
As some of you may know, hospitals won’t release newborns until they have had a newborn hearing screen. The day we were being released they wheeled in the little cart to perform G’s test so we could go home. Recalling the experience with baby #1, when it took more than 5 minutes we were worried something was wrong. An hour later, the technican confirmed G failed his hearing test in one ear, but couldn’t say much more as to why. At that point, when you have also just learned your son is missing a part of his brain and may not walk or talk, it was the least of our concerns and we just wanted to get home!
Once home, we were scheduled for an Auditory Brainstem Response (ABR) in which they expect a baby to fall asleep while they stick electrodes on their head and pull earphones in an out. Yeah, that was NOT a fun experience. AND you can’t move because any movement throws off the results.
SO, FOUR hours (I kid you not!) I sat in a hard wooden chair holding that baby hoping for good results. Four hours later and we were told one ear is good, the other is not so good, but not terrible – he can probably hear, just not at a “normal” volume. They directed us to go see an ENT and come back some other time.A few weeks later, visiting the ENT, and he wants us to do another ABR – as you might imagine this threw me into panic as I was still recovering from the 4 hour extravaganza at the hospital! Long story short, we attempt another ABR (which didn’t work – you can’t get a baby to fall asleep when they are being poked and prodded!), a multitude of other hearing tests over a course of weeks, and nobody can tell us anything.
At this point they want to sedate him for another ABR (poke and prod all you want with drugs!) – Daddy P and I were hesitant to sedate him as he was so teeny tiny, and of all his medical issues, just didn’t think this was the most important. If we were going to do it, let’s do it with his MRI so he only needs to be sedated once. BOY it is a PAIN to schedule multiple procedures and it was literally scheduled 3 months out.
Then the little bugger goes and gets 3 double ear infections in 4 weeks. This means tubes for those little ears. Now trying to schedule the ENT to physicially be there AND radiology, it was starting back at square one and would have been months out again.
With all this drama (and hours of phone calls), we have dropped the MRI and he will get his tubes and ABR next week. We are anxious for this ABR in hopes it proves he just had fluid in his ears during every other test. If that is NOT the case, they have narrowed it down to be an issue with his inner ear bones. They will want to do a CT scan (which we aren’t thrilled about) and probably get him hearing aides fairly soon.
Having said all of that, mama’s intuition says that boy can hear! He smiles at us, turns his head when he hears his sister, and startles at loud noises. Will let you know how things turn out next week!
We had our 6th Month check up with our Neurologist at Dell Children’s this morning. Overall, it was a pretty uneventful appointment. There is little new information about our guy that we could discuss with Dr. Kane. It was fairly apparent pretty quickly that we really needed to have a recent MRI done before being able to discuss anything in detail with him. A few things that came up in the meeting and were answers to questions that we had:
G’s global development delay is not a result of his Agenesis of the Corpus Callosum. I had read online that most ACC kids grow up very much similarly to typical kids their age and only begin to show symptoms of the condition once they mature. So the fact that G is at the level of a 3 month-old right now is more related to his chromosomal abnormality than his ACC. Doctor Kane told us that often ACC is a symptom of the fact that something isn’t right with the development of the child in the womb and that seems to be the case with G. His ACC is a result most likely of his chromosome abnormality.
What the neuros are watching for and wanting to see on the MRI is whether there are gray matter cells in the white matter. I have a hard time explaining what this is, but the general idea is that the brain should continue to mature as G ages up to 2 years old. And if there is evidence of gray matter in his white matter, that means that his brain is maturing poorly.
We’re not in a huge hurry to do the MRI soon and there is no medical necessity for it. There’s really no treatment for his condition…no cure, so there is no hurry to “figure it out” so we can treat it. The main thing that the neuros are watching for are seizures.
Overall, the plan is to continue with the physical and occupational therapies as we are now and continue to pray that he keeps developing and improving. He gets more smiley and rolly (if that is a word) each day, and we love it.
G had his 6 month check up and we found out he was above the 25th percentile in weight! No failure to thrive around here! We also saw the ENT and, no thanks to 3 ear infections in 4 weeks (!!), we confirmed he will need tubes – those will be put in on March 26, and he will also have another auditory brainstem response (ABR) performed at the same time to further investigate his supposed hearing loss.
Last week G had his 6 month evaluation at First Steps, the developmental specialists. Here was the breakdown, with a score of 8-12 being average:
So, we knew he was behind, but its always a bit discouraging to hear just how far behind with his motor skills. He is functioning more like a 2-3 month old right now. The good news is that he has cognitive response – so, his brain is functioning in a capacity which they feel he will be able to learn the motor skills.
G will continue his home therapy of PT and OT twice a week, and they are going to refer him to ECI for speech therapy. The speech therapy is to help him learn to eat – they are concerned that because he doesn’t have good neck control, he could choke fairly easily. They want to get him as a “case” within ECI which is a government program, because that way he is in their system when it’s time to transition to school.
However, after speaking with this dietician and OT, we can start giving him foods on his NUK, a little textured tooth-brush looking thing, to get him used to texture. He got to have some bananas today, and loved it!!
AND, he rolled from his back to his front today!! What a miracle!! He had a big smile on his face too, he knew he did something good! We saw that he was trying so hard, and mom, dad, and Little C all got in the corner calling his name until he rolled over! It was a very special moment for us all!