Special Needs Check-in 8/11

[Brie]

How is everyone doing this week?  Any challenges or concerns related to the new school year?   Any successes recently?

laurenh @barefootbarista KaraOrNot @domerjen liveintheville VillainV GotWine NandaB jessnpaul chickenlittle puplove214 longtimenopost @kar MamaMaui24 auntie swank origami @awinter abs hopecounts rikki

[Deleted]

Huge success- K is walking regularly now. It's become her main source of movement. E is also walking independently. She still crawls often but I'd say another week or so and she will also be walking the vast majority of the time.

I'm very nervous about J starting preschool. Both because he is shy but also because I'm concerned about him keeping up with his peers physically.I think about it constantly.

I found a gym type place that has drop in hours from 3 to 5 MTW. It has laege climbing blocks and stuff for toddlers. I'm hoping to take the kids there at least once a week in the fall/winter to help them get some more gross motor play. This will be especially important once the cold sets in and daily trips to the park are no longer an option. I also enrolled them all in semi private swim lessons for more physical activity. I'm hoping these things help.

[Brie]

We are doing okay here. Theme of the week seems to be fighting with insurance--they're not covering P's reflux meds, God knows why, so we have to appeal that decision. We're also trying to get preapproved for genetic testing, which, LOL.

His PT started him with CIMT (constraint induced movement therapy) last week so we are basically wrapping up his left hand in a foam bandage to encourage him to reach and grasp with his right some. The articles about it are really positive, and I'm hopeful it will help. But, it's also super obvious and invites a lot of questions. I don't mind questions, in theory, but it's still kind of hard to come up with a concise answer and some people need lessons on being polite.

We see his rehab doctor next week, who is basically his primary CP doctor, and I'm anxious about that. Blerg.

On the positive side, he rolls like crazy and is sitting independently!

[Brie]

Aug 11, 2015 8:45:25 GMT -5 @awinter said:

Huge success- K is walking regularly now. It's become her main source of movement. E is also walking independently. She still crawls often but I'd say another week or so and she will also be walking the vast majority of the time.

I'm very nervous about J starting preschool. Both because he is shy but also because I'm concerned about him keeping up with his peers physically.I think about it constantly.

I found a gym type place that has drop in hours from 3 to 5 MTW. It has laege climbing blocks and stuff for toddlers. I'm hoping to take the kids there at least once a week in the fall/winter to help them get some more gross motor play. This will be especially important once the cold sets in and daily trips to the park are no longer an option. I also enrolled them all in semi private swim lessons for more physical activity. I'm hoping these things help.

Yay K&E!

I hope J surprises you.  Hugs.

We started P in swim lessons last Saturday and it was incredible.  He really comes alive in the water, it helps to normalize his tone, I think.  Good luck!

[Deleted]

Brie the PT has always recommended swimming so I'm hopeful it will be good. We have had J in swimming once a week for the last year and definitely helped him.

[longtimenopost]

Great news @awinter!

As much as I hate the TX heat, all the swimming has been great for DD. She has a puddle jumper she's finally getting used to and while her left leg is still very stiff in the water, I'm hoping by the end of summer she'll learn to kick both legs. I think she really enjoys the freedom.

She is starting preschool in 4 weeks, yikes! We are buying a wagon to donate so they can take her around and my mom is sewing patches of thick fabric on the bottom of her pants so she can scoot around outside with the other kids. Meet the teacher night is at the end of the month so we'll find out the other things she needs, but I am staring to get nervous about her ability to make friends. She is so social, but she is very different.

[swank]

We are doing okay. I also had the run around with insurance this week, @brie. I have been trying to get the RSV shot that DS got in November refiled with our correct insurance. It seems the saga will never end but they aren't getting $3k from me ,that's for sure.

DD is on a chemo hold because her numbers are really low. We are supposed to have swim lessons tonight. She will be crushed if we cancel but I am nervous about germs. Sigh. And pre-K starts in two weeks so I think this will be a regular roller coaster.

[rikki]

Hi friends. Xavier had an appointment with his pediatrician and his cardiologist last week. They decided at this point that they will keep him on his same dosage of meds (the one they switched him to, not the original) and monitor him for now. No real change and no decision on if they will do a surgery at a later date or not. He goes back mid-September.

We have been having insurance issues, too. It looks like we will owe close to $10,000 from his 2 NICU stays. I am mildly freaking out.

[hopecounts]

DD started full time school in the regular classroom yesterday.
First day seems to have gone well, she got a little upset when she realized she wouldn't be seeing her aide rom last year at all but settled in once she saw the teachers she knows in the classroom and the toys they had out for sensory playtime.

We'll see how today goes.

[Brie]

Does anyone have a care coordinator though their insurance? Our pediatrician suggested one last night when we took P in for an EI, but I called today and they were bitchy about it and told me to have our provider call back to request.

[abs]

Frustrating week. DD has started drooling more and her speech isn't as clear as it was last week. She always regresses a but before mastering a new sound though so we will see.

[longtimenopost]

Brie no, I haven't heard of them. Strength to all you in insurance battles! DD has medicaid secondary so for regular medical care we only pay premiums for her primary insurance, but her main therapy isn't covered by anything and it's approximately $10K a year. Thankfully my family helps with that.

[hopecounts]

@domerjen it's hard.
Would first:then work for letting you lead play/games?
first it's mommy's turn to choose what we do/be the leader Then: it's X's turn. Sometimes the concrete expectation with the carrot of getting to take over later can help.

How does he do with social stories? would that help ease his anxiety about school?
DD finds them very helpful for lowering her anxiety about new/different situations. I make them in word using pics I took or from google images and walk through what to expect so for school it would be
X will be going to Y school again.
X will have a new teacher (if you know in time put who that is and the classroom number/info)
Some things will be the same (coming in and putting up his backpack, saying hi to teacher and classmates, etc)
Some things will be new.
then walk him through those (what to expect in the lunchroom, ideas for recess X can ask to join a game or play by himself if he needs a break)
and so on.

[longtimenopost]

so many hugs @domerjen. Our situations are different, but I have found myself having anger and resentment towards DD and the guilt I feel afterward is awful. It doens't mean we love them any less, we are just human!

[GotWine]

We got the results back from the genetic testing he had done back in June. Everything came back normal. That means there is no underlying condition that caused his stroke. It's a relief.

We have been making a gazillion or so phone calls trying to get ds enrolled in Medicaid or some form of assistance. It looks like we will be meeting our OOP max this year at the tune of $13k! We have been trying to negotiate with the different hospitals and apply for their financial assistance programs. We were approved for 55% reduction for one of the hospitals which was great. Of course, nothing is ever easy and quick when dealing with these things.

He is making progress with all of his therapies and I'm trying to focus on all of his improvements. His eyes are turning in more now, and I'm hoping that after he sees the ophthalmologist in two weeks we will have something in place for his eyes, either glasses or a patch. Hopefully once his eyes are working together he will have more mobility.

[laurenh]

That is great news, @awinter! Hoping things go well for J.

Brie people can be so dumb. FX he sees improvement from it! And awesome update about the rolling/sitting - R hit unassisted sitting this week too!

[laurenh]

Brie we had a nurse coordinator assigned to us through insurance but TBH I didn't really see any assistance from it and they always called me at super annoying times. The one good thing that came from it was that she was actually the first person to bring up EI while we were still in the hospital.

[laurenh]

Hugs @domerjen - don't be mad at yourself, it is a lot to handle!

[laurenh]

Also sitting in a pile of bills and calls to insurance and providers, I wish there was an easier way to manage this since ya know, I work during the day to try and pay all these damn bills. Have better hours!

R is sitting unassisted for long periods of time, can't wait for PT tomorrow! She is still only sometimes rolling onto her side, but we'll get there eventually.

She had an SLP evaluation for some tongue control stuff we had seen but they aren't concerned at all and she has been taking purées much better this week. Last night she was actually opening up widely after swallowing each bite

We have a calm few weeks until an EEG at the end of the month to see if we can drop another dose of her seizure med. I'm hopeful but also it is such a source of anxiety for me to take her off them and not be able to watch her 24 hours a day.

[puplove214]

Hugs to everyone having a challenging week.  To those of you struggling with insurance issues, have you looked into Katie Beckett waiver?  It essentially allows your child to be eligible for medicaid based on their income/assets - it doesn't take yours into acocunt.  We got the run around in the beginning but finally got approved.  We still have our work insurance as our primary, but having medicaid as secondary means we shouldn't be responsible for balances.  It won't help with past bills, but will give us some breathing room in the future.  Brie we were assigned a healthcare coordinator through medicaid and she's been a big help so far.  She told us about programs and groups that we wouldn't have known about otherwise.  

DS is officially in the toddler room now and he's been doing pretty well.  He even slept on the cot - herd mentality is real haha.  The teacher that I didn't love quit while we were on vacation.  They have a new teacher starting in 2 weeks, I'm hoping she will be a better fit. 

My anxiety has been through the roof lately.  August 24th is our appt to get test results and I feel like I won't be able to breathe until then.  Wine helps.

[KaraOrNot]

Aug 11, 2015 12:24:08 GMT -5 laurenh said:

Brie we had a nurse coordinator assigned to us through insurance but TBH I didn't really see any assistance from it and they always called me at super annoying times. The one good thing that came from it was that she was actually the first person to bring up EI while we were still in the hospital.

I felt the same with ours. I am still actually not sure exactly what they do and after not getting a clear answer, I told them we weren't interested.

Ollie is doing good! The endocrinologist thinks that his high TSH may have just been a fluke, so no meds for now and just a recheck with his pedi in 6 months.

I am still fighting with birth to three to get regular services. PT finally came last week, but she is retiring. We do have our annual review in the next month, to review his goals and I think that will be a good time to add additional services to his plan. PS how is my baby almost old enough to need an annual review? Crazy!

[VillainV]

Colin's been doing pretty well. He had his evaluation with Speech Therapy today, and it turned out about like we thought -- his understanding of language is about average, but his expressive language is in the 5th percentile. He doesn't have any words at 16+ months, but he seems to understand a lot. Unfortunately there's a several MONTH long waiting list for services. His Physical Therapy referral was delayed for some reason, but I have a feeling there's going to be a long waiting list for that too. The good news is that he will qualify for both services until he's 3.

Our first monitoring appointment with Oncology is tomorrow morning. Hopefully we'll find out what his monitoring schedule looks like (every month? every few months? for a few years? several years?). We also hope to find out if his version of Wilms' tumor is genetic, which would be nice to know since we're on the cusp on TTC #2, and a genetic link might change our plans. I highly doubt our insurance will pay for genetic counseling, and we can't afford it OOP, so this could be a game-changer for us.

[origami]

This is not SN related but it's all I can think about. We just flew home (overseas) on a 13hr flight and then found out Delta failed to put 1 of my booster seats on the plane. Supposedly because the plane was at its weight limit. So you pick a fucking booster seat that weighs 5# to take off??? I flew with ELEVEN suitcases and they kept a car seat behind. I'm so beyond furious right now. And to top that off, I noticed when we got to the airport that 1 of the (radian) booster's top part won't click higher. It's stuck in the lowest position. And now I'm in fucking South Korea so I'm sure it'll be fun times getting that dealt with.

Clearly I haven't slept or ate all day because im just ready to kill someone.

To make this partially SN related - I forgot to pack the kids ST/OT exercise homework stuff. It was a really good binder full of games the kids actually want to do

[mainelyfoolish]

I don't know if I belong here or not, but I'll post anyway. After last week's picky eater thread, I found a book called Helping Your Child with Extreme Picky Eating. The kids described in the book sound exactly like DD. According to the authors, the therapy we were trying for DD with a LCSW (who admittedly had no experience with picky eating, but we were referred to her by another therapist who thought she could treat DD anyway) was all wrong. Not only not helpful, but harmful (not in general, but for the case of extreme picky eating). I feel horrible. We keep trying to help, and it looks like the best help is no help; removing all pressure whatsoever from food. We "broke up" from our therapist and are now back to doing things on our own with the book's plan. It could be months or years before we see DD make any progress, but it's been like that for the last six years, so I guess that's nothing new.

[osulori]

mainelyfoolish, what did the therapy have you guys doing?

[mainelyfoolish]

Aug 12, 2015 7:29:32 GMT -5 osulori said:

mainelyfoolish, what did the therapy have you guys doing?

Behavioral therapy with a marble jar for rewards for trying new foods. Also, not serving any of DD's preferred foods at dinner to basically force her to try a new food or go hungry. 

[osulori]

Aug 12, 2015 9:31:54 GMT -5 mainelyfoolish said:

Aug 12, 2015 7:29:32 GMT -5 osulori said:

mainelyfoolish, what did the therapy have you guys doing?

Behavioral therapy with a marble jar for rewards for trying new foods. Also, not serving any of DD's preferred foods at dinner to basically force her to try a new food or go hungry. 

The reward system makes sense to me, the other part notsomuch.  I'm sorry you guys have had such a setback and that someone was recommended to you that had no experience with picky eating, but it's great that the book has been helpful!  Do you have a children's hospital in your area?  If so they should have pediatric behavioral psychologists that deal with picky eating and other feeding issues that might be beneficial in the event you guys decide you want/need some extra help again. Or if there's anything I can try to help you troubleshoot, please feel free to PM me

[Brie]

Also, I'm on pins and needles right now. I e-mailed P's craniofacial team updated head photos yesterday, as they want to check in periodically and review/compare to see how his skull is progressing. They're going to let me know if they think it's good progress or bad progress hopefully soon.

[mainelyfoolish]

Aug 12, 2015 9:39:08 GMT -5 osulori said:

Aug 12, 2015 9:31:54 GMT -5 mainelyfoolish said:

Behavioral therapy with a marble jar for rewards for trying new foods. Also, not serving any of DD's preferred foods at dinner to basically force her to try a new food or go hungry. 

The reward system makes sense to me, the other part notsomuch.  I'm sorry you guys have had such a setback and that someone was recommended to you that had no experience with picky eating, but it's great that the book has been helpful!  Do you have a children's hospital in your area?  If so they should have pediatric behavioral psychologists that deal with picky eating and other feeding issues that might be beneficial in the event you guys decide you want/need some extra help again. Or if there's anything I can try to help you troubleshoot, please feel free to PM me

The book specifically mentions the reward system as being good for concrete tasks (potty training, making your bed) but not good for learning to like new foods, and from what I experienced with my DD, I tend to agree. She was trying hard to earn her marbles but it was causing her a lot of anxiety and she had started to say things like, "I hate myself" and "I wish I was a different kid."

We have a small children's hospital but they don't have feeding therapists that deal with what I think DD has (avoidant/restrictive food intake disorder). We actually did feeding therapy with an OT when DD was 2 and the therapist used a progression of touch it, kiss it, lick it, taste it and food chaining -- and DD didn't improve at all. The book I just read mentions this a being an ineffective method for kids with ARFID, too. 

Thanks for the offer of help. Right now, DH and I have decided to go the zero pressure method as recommended by the book, which doesn't require much in the way of therapy. DD is able to maintain a normal weight so we can let her go like this indefinitely without much in the way of health concern (she also gets Miralax and a multivitamin). 

[mrssandro]

So when did this group start? I have been out of the loop and focused on the new job.

DD was diagnosed with FTT at 6 months. She was little less than 10 pounds. She has severe silent reflux but they also where thinking that the really bad Jaundice caused her to have brain damage/cp. So they didn't believe me when I told them I thought she has silent reflux. Several tests later nothing was identified other than the reflux.

GI got her on reflux meds but daycare just did not work out for her. With a reflux baby they need to eat all the time. And apparently they reflused to feed her when she was crying if it was before 8. So this made her reflux worse and she would not take a bottle at daycare. My MIL decided on her own to quit working at the daycare (she was in the 2-3 year room) and take care of DD exclusively. Right before she (my MIL) had her last day of daycare DD caught a really bad stomach bug and ended up in the hospital overnight. She has lost about 2 pounds on a FTT baby...so it was dangerous. 

3 months later DD is 16 pounds (and gaining about a ounce a day) and seeing a GI regularly. She is also starting PT/OT therapy soon because her growth was slowed by the reflux. Recently the GI upped her meds to twice a day. The ENT doctor says that her stridor is bad because of the reflux. Having said all of that..she is on the upward mountain now and with her recent weight gain and her evaluation by PT they think she has every reason to believe she will be fine. No more discussions of brain damage. 

Basically I have been hiding from everyone to discuss the specifics on this because people tend to judge or make stupid comments about little babies.

xoxoxo ... miss you guys.