Posts Tagged ‘gross motor

16
Dec
14

Treading Water, but Ok.

We’re all ok.

We went on vacation to Florida in October. I didn’t post about it. Drake had a horrendous bout of croup while we were in Florida. I almost took him to the emergency room, but his pediatrician on long distance listened to him over the phone and advised hot steam in a bathroom instead. Not breathing well is never a state you want for your kid. He was well the first night and we went to Mickey’s Not-so-Scary Halloween Party. That was a blast. The rest of the week. Not so much.

He has been on antibiotics every 3 to 5 weeks since April. Within 2-3 days of the start of the sniffles, it goes straight to both his ears. Our follow up from the last Sunday urgent care visit is tomorrow. I’m going to push for him to visit his ENT. His mouth cyst could use a check anyway.

We are nearing the end of our EI, First Steps journey. Our final IFSP meeting was last week. The week prior he had his evaluation with his future elementary school if he qualifies for preschool at 3. His PT is pretty sure he will. She, and our coordinator are going to come to the January meeting about his assessment results.

I am torn, and so is daddy. Obviously, we want him to have the services he needs, but we really like his private preschool. Flip side, we could really use the economic break of a half day of free school. Ugh choices. And if we don’t start him on IEP’s now, if he needs help later what will the battle be like to get it?

He’s just not there yet gross motor wise. We’re operating in the 20-24 month range, which is great for where he started from, but I KNOW he needs the PT services to continue. I joined a Hypotonia parent group on Facebook.

We are worried he may have had a seizure after spending the night with his Gammy. She said he spaced out for a long time and touching him and speaking to him she couldn’t get him to answer. When he came out of it, he just said Hi Gammy like nothing was wrong and she took him to school. Pediatrician is having us keep a journal and taking a wait and see approach. He’s never done anything similar to me.

I have been asked to teach an associate’s level class next semester now that I have completed enough graduate hours. I am really excited and I hope it is a good experience for myself and my students. It will be a small business finance class.

And then…Christmas. And then…3. What the heck? Where did my tiny baby go?

02
Apr
14

Night-Night Shoes and new Daytime support

Our orthopedic follow up on D’s Ponseti treatment was awesome. His nurse and doctor couldn’t believe that he was the same 4 pounder they met in April 2012. 6 rounds of casting, 3 months of 24/7 brace wear, and 2 years of “night night shoes” and we are halfway done. His flexibility and bone structure looked good, and I got a mommy gold star for being a good patient and practicing good brace protocols.

From the crying 1 year old who took games, songs and both parents to get his shoes on properly, we now have an amazing two year old who gets his brace and brings it to me when he wants to go to bed early. He insists on attempting to do the buckles himself, and gives himself “mustaches” with the center bar. Daddy’s amazing game that got us through the 12-20 month old period.

I am excited about finding out the next step in his daytime orthotics from his physical therapist at PT on Friday. I think we’re going to be going with sure steps, and hopefully it will give him the support and stability he needs to continue making gross motor progress.

I feel a little guilty that he will have a new set of orthotics to deal with. My husband and I spent a long time debating it, but if we can help him avoid the pain that ruining his ankle ligaments would cause as well as be able to run with his school friends it will all be worth it.

25
Jun
13

Arrrrrrrggggghhhhh

Today was Early Intervention evaluation day. I did like our evaluator, but I have to say I’m starting to think my state’s rules on qualifying really suck.

Based on our post-eval discussion, I think D is going to end up one of those kids stuck in the in-between. I honestly feel like finding an isolated spot and just screaming at the top of my lungs for an hour. There is nothing more frustrating and scary than knowing your child needs help and being scared you won’t be able to provide it.

She agreed to some of the same issues I believe we need to be concerned with and even brought to light something I hadn’t yet caught on to.

Of course his NICU follow-up report came in the mail TODAY. Two hours after it could have been useful.

So GRR universe. My body may have failed my son, but I’ll be damned if my mind will. He WILL get the help he needs if I have to work three jobs to get it for him.

I haven’t felt this angry and frustrated since the day I got the Synagis appeal denial letter last fall.

We should hear by the end of the week if he qualifies. Because he is performing at the low end of his adjusted age. He may not qualify for EI until after 24 months. I do not want to wait until he’s 2 to address gross motor and speech delays.

Tomorrow, I will start investigating private options, how our insurance would handle it, and obtaining the referrals needed.




Drake’s 3rd Birthday

February 20th, 2015

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