So G has always been a small baby, weight and head have always been well below the 5th%. His small head size concerned me, but the Dr was ok with it since G was following his own growth curve. Well at 9 months his head size percentile started to drop, and the Dr mentioned that it was something to keep an eye on. We also got a referral to Early Intervention because G wasn't babbling.
We had the EI assessment about a month ago, he qualified for occupational therapy and developmental therapy. We were told he would be re-assessed for speech therapy at 18 months. We still haven't received a written assessment, and just this week we were contacted by a developmental therapist to set up appointments starting in a few weeks.
Yesterday G had his 12 month appointment. His head only grew 1 cm. The small size combined with his delays, has our pediatrician very concerned. He has ordered an MRI for G, the hospital will be calling us this week to schedule it.
I am so scared. The actual MRI scares me since he will have general anesthesia, but the potential diagnoses terrifies me. I could use some positive thoughts, or good stories, or a stiff drink, or something.
Ugh, I'm so sorry you're dealing with this. I know how scary it is as we are in a similar situation waiting for a diagnosis (medical rather than developmental, though). Violet has had an ultrasound, MRI and surgery - both the MRI and surgery under anasthesia. It is amazing how resilient babies are. Literally the day we got home from both of those procedures, she was up and playing and acting like it was no big thing! I really think it's harder on us than on them! The worst part is getting the IV in. eav2c an attest to that! But at our hospital they give the babies some versed to take the edge off, so they are kind of drunk before they get any needles. But, yeah, that part is still pretty hard.
I try to remind myself to be grateful for good health insurance and being attentive early on so any issues can get taken care of and monitored right away. I am also grateful for good hospitals and a strong family support system. Other than that, I just kind of live my life. Our babies are still our babies. And even with a diagnosis tomorrow, they will still be the exact same little person they were today.
I hope this helps a little bit... knowing that you're not alone.
Also, one more tid bit - I never bring up V's medical issue IRL. A couple of weeks ago I was at a playgroup and a mom brought up her son's medical needs. That prompted another mom to take about her son's surgeries and issues. So, I chimed in too! And all of a sudden I didn't feel so isolated. So many kids and babies are dealing with things and often times people just don't talk about it! That gave me a little bit of solace.
Post by angiekay84 on Apr 27, 2013 11:11:44 GMT -5
BIG HUGS. I bet waiting for all the answers is just as hard, but it really sounds like you guys are not only on the right track but have taken steps to help him already. Similarly to ruby412 we don't talk about Sophia's issues that often (even here) because sometimes it's just hard. Keep us updated and good luck to your family!
It will be okay. EI is great. Colin is in it though we are just starting to see his therapist. As for the MRI, Ruby is right. The MRI sucks a lot more for us than them. Colin was ready to play a few hours after. My only huge recommendation is that when they give the IV, I would ask for some sort of sedation prior so your LO doesn't have to be stuck a stupid amount of times. Hopefully they will get it in right away but at the time Colin was chubby and they stuck him at least two dozen times. We finally put our foot down and said NO MORE. Hopefully it won't be a big deal for you guys and that will go smoother but don't let them continue sticking to get an IV. They have options to make it easier.
Try and keep your head up. Whatever the outcome, there are tons of resources and EI will help! Of course we are all here for support too. Hang in there!
I'm so sorry you are dealing with this! I always think the worst when scans come up, it is honestly hard not too! You need to take this day by day and keep yourself busy till you have a concrete answer about this. Easier said than done I know! Don't search Dr. Google either!!! For instance I had myself with reoccuring cancer recently because of it. Luckily, after all the tests it turned out to be bad acid reflux but seriously this stuff is scary and even more scary if your child has to go through it! My son had a helmet for a misshapen head (plagio) and he also has a floating rib. Before we brought him to children's I was shitting my pants because he has what's called mild pectus carinatum with a floating rib. The doctor was very reassuring and at this point my son's ribs look pretty normal except for the "stuck together" rib. Also, my daughter had a hernia when she was just a few weeks and went through the surgery. Anything with kids is scary but just hold on for now and know that they are doing what they can to see what is wrong. Thinking of you!!
Emerson Kate, born 38w5d on 4/6/12 at 6:02 p.m., 5 lbs 13 oz and 18 3/4 inches. Lucas Matthew, born 39w5d on 4/11/14 at 8:20 a.m., 7 lbs 4 oz and 20 inches.
BIG HUGS. I bet waiting for all the answers is just as hard, but it really sounds like you guys are not only on the right track but have taken steps to help him already. Similarly to ruby412 we don't talk about Sophia's issues that often (even here) because sometimes it's just hard. Keep us updated and good luck to your family!
If you ever want to talk, feel free to PM me. It's nice to not feel alone with these things.