can i please vent...feeling very something

[NandaB]

Hi all. Sorry I haven't been around much. Wesley got rsv and bronchiolitis and was hospitalized twice. For 8 days then 12 last month (we were home for 5days in between). It was pretty awful.

Now we are dealing with him not gaining weight. I am nursing and supplementing with extra cal formula, but it doesn't seem to be helping. I'm stressing out. And we are going for weekly weight checks at the pedi.

We also started with regional center. So we had a pt assessment and an ifsp meeting (where no goals were created and we didn't have the pt assessment report yet). He was approved for pt, ot and early intervention. So now I get to figure out when the hell were going to do that stuff. Plus we have to see the cardiologist next month. And the Ent recommended a hearing aid. So we have to go back to the audiologist over an hour away for that. Its just so much.

The pt assessment was ok. I mean, I have 2 other kids, so I know he is floppier and less active/strong/interactive. And the pt said he was somewhere between a newborn and a 2 month old in regards to his strength and general tone /abilities. But iys just finally hitting me. Especially compared to my friends son I see every week because our toddlers are in class together. I guess because he doesn't have a really stereotypical Down syndrome look I was fooling myself. Or in denial.

I guess I'm just having a hard time knowing how I'm going to juggle this all and still have some sense of normalcy for my big kids.

[NandaB]

Sorry for the word vomit. I had a glass or 2 of wine.

[olivegoose]

I don't have any good advice but lots of hugs and wine.

Does EI provide in home services there?

[spooko]

I'm really sorry you're in such a rough patch. I hope you all are doing better soon.

[KC thepouchh8r]

I'm sorry.

Although we are on different paths I can relate with dealing with all the specialists appointments and therapies and having another kid to manage. We did therapies in home. Ds got to hang out on the iPad during. I would also leave dd for five minutes and just give him some attention/show some interest in whatever game he was playing so he didn't feel forgotten.

In terms of appointments he always stayed with my mom or dh if she couldn't do it. They always tried to do a little something special for him even if it was just making an ice cream cone.

The most helpful thing which you probably know already 1 on 1 dates with each kids. Ds is a talker so I always involve going to a restaurant before we do a fun activity so we can talk. I ask him how he's doing/feeling. I ask what I can do to help if he's struggling.

I recently went to a parenting conference for raising special needs kids and got a good piece of advice for helping. It says spend five minutes of uninterrupted one on one time daily with each kid. Seems easy and something everyone does...but the goal is that you only sit and observe. Narrate what they're doing like you would if there were a blind person in the room. Offer praise like great job building that tower. Resist helping (unless the child asks) or correcting.

[mrsbuttinski]

I'm sorry.

In many places EI services are delivered at home which should cut down travel at least.

[bzeetyd]

I'm sorry it's stressful and difficult. We are on a different path but had to figure out fitting in services and trying to get it to all coordinate. It's a lot to imagine managing when it first comes down. We're still working on it but it does get better. You'll get into a groove and figure things out that work best for him and your family. I'm glad your little guy is feeling better lately. Makes such a difference and is additionally stressful. It's great to vent. So many of us have been there in one way or another.

[cam]

Hugs! Sorry he has been a rough go with the illnesses. I hope he is able to stay well for as good long of a stretch as possible. It is a lot to juggle everything. I am juggling two households instead of additional kids, so it is very different but still adds a lot to my plate, so I can relate in that manner. I think just continuously staying in communication with your other kids and doing special time with them when you can will help them (and you) feel some normalcy. A lot of the specialists and such will eventually become more of periodic check-ins and fine tuning than the planning, getting things figured out, and all of that, at least to some extent.

[mack]

I have no advice but it's so overwhelming. Lots of hugs to you!

[toastie]

This is why we moved in with my parents when our second son was also diagnosed. It was next to impossible at the time with 2 kids in EI and all our services were delivered in a center, nothing at home.

Hugs. You will manage. It will be exhausting, frustrating, and at times very difficult, but watching W progress will make things all worth it. Will you be seen on a regular schedule? You could consider putting the biggers in a MDO or preschool while W has therapy.

iPads, coloring books, ands special toys that only come out at Drs appointments also will help occupy them.

[NandaB]

Thanks everyone. I'm feeling a little better today.

I am super lucky to have my parents close by, so my mom usually watches the big kids for me during appts. Unfortunately we aren't able to do pt and ot in home now, but we let them know that is our preference when the schedule opens up. The good thing is that the clinic is right across the street from my oldest sons preschool, so we will be scheduling that for right after we drop him off. The early intervention is going to come to our house, but at 5 pm, so that will have to be crock pot night I guess.

I will feel a lot better when he is gaining weight, but I got this. Thanks for the kind words everyone.

[blushballoons]

I don't have any advice but I am sorry you're feeling overwhelmed. I hope you get a schedule and everyone adjusts quickly and W starts putting on weight for you.