Eddy was full-term, actually born on my due date. The birth was easy (And by "easy" I mean not easy at all, but as far as birthing goes, I'm told that pushing for twenty minutes for baby #1 is not a "difficult" labor.) We were out of the hospital a day and a half after giving birth, Eddy was a good eater (although not a good breast feeder), he smiled within the "normal" time frame, he rolled over when he was "supposed to." It wasn't until he was six months old that we started getting concerned because he wasn't close to sitting up on his own yet. Everyone told us the typical "every baby is different, don't worry, he'll get there" thing, which is probably what I would tell someone also...but then seven months came and Eddy still wasn't sitting up, eight months came, and he wasn't sitting up or babbling. Finally at nine months, Eddy was able to sit up independently, but by this time we were super worried. He also wasn't babbling or imitating and physically the only thing he could do was roll around and sit up if he was put in a sitting position. At his nine month check-up I voiced my concerns to his pediatrician, and he said he was also concerned and referred us to Early Intervention. Eddy was evaluated when he was almost ten months old, and it was determined that he qualified for physical, occupational, and speech therapy. Therapy started a couple weeks later (physical therapy twice a week and speech and occupational therapy once a week), and Eddy started slowly progressing. All of his therapists agreed Eddy was "bright" and quite unique, in that it didn't make any sense that he was delayed. He had a stay-at-home mom who worked with him constantly, both of his parents were at the top of their classes academically...Eddy "should be" really smart.
The general consensus was that, with a little therapy, Eddy would "catch up" in his own time frame. They also thought he might have some sensory issues because he wouldn't drink anything cold (including water, until he was about twelve months old!), he wouldn't sit in the grass without freaking out because he didn't like the way it felt, and he didn’t like touching any "slimy" foods like cooked apples or carrots. His demeanor, though, was great, as long as he didn't have to do anything he didn't want to do (which probably applies to 99% of babies, right?). We could take him out to a restaurant and he would sit quietly playing with his toys, smiling at everyone who talked to him. His personality is very sweet, chill, friendly, and social. So, even though he was "delayed" and we were worried, we were enjoying our boy and were optimistic that he would catch up with therapy.
But then, the day before his first birthday, he had a seizure. And the first thing I thought of after "Oh my gosh, he's having a seizure" was "There is something wrong...and it's much bigger than a delay." When we talked to the neurologist and said that Eddy was developmentally delayed, he became much more concerned about the seizure. If you have a delay AND a seizure disorder, there is a good chance that something major is causing it. The three "main areas" that would cause the problem are neurological (something is wrong with the brain), metabolic (I'm not going to pretend to understand metabolic disorders), and genetic (birth defects/something you're born with). After getting a normal MRI, we were able to cancel out any "neurological" underlying causes, for the most part. After getting the normal metabolic bloodwork results, we were able to scratch the "metabolic disorders" off the list (again, for the most part...there's always some strange, rare thing they could miss with the basic tests.) So then, we were left with a genetic cause. And I did tons of research and completely convinced myself that Eddy has a genetic disorder. I was a wreck and couldn't sleep or eat or do anything for a week straight because I was SURE that Eddy had a genetic disorder (The only positive thing that came from all of this is that I lost ten pounds and could finally fit back into all of my old clothes. Probably not the healthiest way to go about it, but I'll take it nonetheless. )
I called the pediatric neurology office (again) to see if they could refer us to genetics, and they did, but we weren't able to get an appointment until November. This was not going to be good enough for me. So, in our many hospital visits, I asked every single doctor I talked to (and there were several!) if they could help move up our genetics appointment. (One thing I've discovered throughout this experience is that there is ALWAYS an earlier appointment, if you're persistent enough.) Almost all of them said, “Sorry, can’t help you with that, not my department,” but one, nice young female resident said, “I’ll call genetics, give them your story, and see what I can do.” We were discharged from the hospital that day so I wasn’t sure if it would go anywhere, but I was just happy she tried.
The following week, when we were back in the hospital, I asked yet another doctor, this time the pediatric neurologist on call, Dr. Langan. Immediately he said, “Sure, we’ll call genetics and have them come see you here in the hospital on Monday for a consultation.” (I knew it was that easy if we found the right guy!) But we left the hospital Saturday due to my husband getting sick, and we were back to square one for the genetics appointment. Finally, last week, I tried calling the genetics office again, and I left a message (in which I may have started crying.) Well, an hour later I got a phone call back from the genetics secretary who said, “Can you come in tomorrow?” and of course I answered, “Yes!”
So the genetics appointment was last Thursday. During the appointment we finally got the results of Eddy’s Fragile X test (from about 4-5 weeks earlier) back, and luckily this was negative. They took more bloodwork from Eddy for a DNA microarray, which will basically determine if he has a genetic disorder or not. The genetics doctor, Dr. Robinson, was very helpful and kind, and he is going to personally call us next week to give us the results of the test. So right now we are anxiously and very nervously waiting for these results.
Something strangely positive has been happening since Eddy started getting seizures – his development has improved by leaps and bounds. In the past month, he has started army crawling like a champ and can now easily get anywhere. He is much better at transitioning from sitting to on his tummy, and has gotten himself to a sitting position independently on several occasions (and is sooo close on every other occasion). He is making much more sounds, and has said “mama” a few times! I swear he also said “up” but my husband doesn’t believe me on that one.
In the past week and a half alone (since we got home from the hospital and he started the Klonopin), Eddy’s development has made the biggest strides yet. Last week, I saw Eddy army crawling towards the couch like he was on a mission. I ran in the other room to grab my camera, and by the time I got back to the living room, Eddy was standing up at the couch by himself! He had never even expressed interest in pulling himself to stand, so I was crying (this time happy tears!) and throwing him up in the air. He probably thought his mommy went crazy.
Also, he has started to crawl on his hands and knees! He can only get a few “steps” as of now, but last week he wasn’t even trying to! Another great accomplishment is that yesterday he started clapping, something we have been trying to teach him for 6 months now! I don’t know if it’s the Klonopin, the Keppra, just the normal time-frame of his development, God answering our prayers, or all of the above, but we are definitely uplifted and encouraged. I really do believe that God is part of this experience, and I know that through Him all things are possible. God has given us the gift of an amazing little boy who has already taught us so much. No matter what the future holds with Eddy, we will continue to love, encourage, guide, and support him in everything he does.
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