Pediatric Neurology visit.

[scrub-jay]

((hugs)) I hope all goes well today.

[MrsK]

((hugs)) I hope all goes well today.

Me too.

[HouseofWool]

Good luck with everything.

How did the MRI go?

[moonlight]

Good luck with everything.

How did the MRI go?

Please don't call me crazy, but we didn't go through with the MRI. I had to make a really hard decision. It took weeks to decide. I cried about it, talked about it, I even had an argument with my MIL about it. Even tho she agreed with me, she still had to take the opportunity to treat me like an idiot. In the end all of the baby's labs came back normal. We met with the pediatric nero surgeon and asked their opinion on getting the MRI. They didn't think it was necessary. I agreed with them and ultimately decided not to do it.

Today we got the helmet. Tomorrow we start the official first day of wearing it. I'd have to say today was one of my more "challenging" mommy days in a long while.

It started with the worst nightmare EVER (someone/thing trying to hurt the baby) at 4am, followed by me waking up to (this is 9am) a screaming baby that had a baby blanket covering her face that she couldn't get off... her face was HOT and covered in sweat (yes, that scarred the *BLANK* out of me!), followed by constipated cranky baby all day, followed by me going to a useless doctor's visit (waited 1 hour to talk for 5 minutes), followed by me and the baby getting locked out of the house while I was trying to get to the pharmacy, followed by me running late to the screaming-baby-appointment/helmet fitting.

Good riddance Thursday. You sucked.

[DCJenn]

I don't know what happened to my post but essentially it was: helmets suck; they're hot and uncomfortable. BUT in a few days the kiddos get used to them and ultimately, they do good things. Keep us posted and have a glass of wine, after the day you had!

Jenn

Sounds like you had one heck of a Thursday! I hope Friday is a lot better and the helmet wearing is off to a good start.

[fluffhead]

We had to make a similiar difficult decision when DD1 was very little. One peds neuro recommended an MRI, and we made the appt, but then decided against it, due to the general anasthesia issues. In the end, the 2nd opinion we got recommended against the MRI, and we ended up doing the MRI when she was older and capable of being very still without the anasthesia.

It's all very very scary. I definitely empathise.

[HouseofWool]

It is very scary to have your child sedated for something like that. It made me a wreck. If your PN didn't say you needed it, I am sure you are fine. Hugs!

[moonlight]

It is very scary to have your child sedated for something like that. It made me a wreck. If your PN didn't say you needed it, I am sure you are fine. Hugs!

I finally got a proper medical history from my MIL after the neurology visit. Apparently my MIL never thought to tell me that DH also had poor muscle tone as a baby. Six months of PT and she NEVER said a word! It was only after the nerologist got all of us scarred did she think about it. Anyways... The finial diagnosis is some minor congenital low tone syndrome. The doctor thinks DH also had it, but it went undiagnosed. Basically she is meeting her physical milestones 1-2 months behind the "average" baby.

Today we had PT and the first official day of wearing the helmet off and on each hour. She cries for about 2 minutes after I put it on and then calms down and goes on with whatever we are doing. Children are amazingly adaptable, aren't they?

[SuzySunshine]

Glad she's adapting - yay!

and

Boo for MIL - what is with people?

[MrsK]

Amazing. As much as this stuff upsets us now, we cannot even imagine that someday we will be the MIL that forgets to mention it. Glad A is doing well. 1-2 months behind milestones doesn't sound like a big deal to me. There is such a large range that is considered "normal". Baby K has been about a month behind too and everyone is making me crazy about it. But, I figure he was born just one day past 37 weeks with a low weight and all the preemie hallmarks. If he was born one day earlier, they would all be age-adjusting for prematurity and he'd be right on track. As long as our babies are growing and healthy, hitting a milestone a few weeks late is not a big deal.

[HouseofWool]

Amazing. As much as this stuff upsets us now, we cannot even imagine that someday we will be the MIL that forgets to mention it. Glad A is doing well. 1-2 months behind milestones doesn't sound like a big deal to me. There is such a large range that is considered "normal". Baby K has been about a month behind too and everyone is making me crazy about it. But, I figure he was born just one day past 37 weeks with a low weight and all the preemie hallmarks. If he was born one day earlier, they would all be age-adjusting for prematurity and he'd be right on track. As long as our babies are growing and healthy, hitting a milestone a few weeks late is not a big deal.

This this this!

Caleb had IUGR because of my hypertension. At 38 wks he was only 5 lbs 15 oz and 19.5". TEENY! Even though he wasn't technically premature, he did hit some of his gross motor milestones a bit late. By 10 months he had caught up and surpassed the average. It was weird because he couldn't roll over until well past 7 months, but he could sit and pass a block from hand to hand before 6 months. At 10 months he was walking and by 11 months he was running everywhere!

[moonlight]

Thanks again MrsK and Kris for the support!!! Both of you are so right. It's very hard to keep everything in prospective. We are STILL in weekly PT and I caught up in the rigors of our daily PT homework. Is it bad to say I'm really sick of that place and the people there? I honestly want to quit and not go back. Part of me feels like none of this PT is really don't much good. She seems to hit milestones when she feels like regardless of how much or how little I'm working with her. The PT homework is so frustrating. Most day I sit on the floor with her and cry with her as we work through the positions.

And I’m really bummed you lost your post Jenn! I’d love any insight you can provide.

[MrsK]

Have you spoken to the PT about the homework? Maybe they are pushing too hard or maybe they can recommend something to lighten the load? We've had PT homework too and I have to admit we have not always been as compliant as we should be. If the baby is having a bad night, we may skip homework or stop after a couple minutes. Also, we intersperse a lot of songs and games with PT or we slip in a couple minutes of PT here and there during the day -- for instance, a little stretching on the changing table when we change his diaper. Our therapist has worked with us to find exercises that he likes. For instance, the floor exercises don't go very well but he loves the ball.

[DCJenn]

Sitting on the floor and crying out of sheer misery is no way to live. If you're miserable, she's going to be miserable. As Mrs. K suggests, think of ways to do the movements in smaller segments or when they would more likely occur naturally (as if that were really possible). and there's no reason why you can't do exercises outside on a blanket or someplace else far more interesting. A local park or the zoo could be doable- and a change of pace could be good for both of you.

My nephew is in speech therapy and I know there are days when my brother gets really frustrated but lo and behold, he's making progress. It's mostly at the microscopic level until BAM- he says something new. It's working, but you may not see it all at once.

Keep us posted!

Jenn