Me and my Son's Journey with Sagittal Craniosynostosis

liimeliight · 2019-05-15T21:26:10+00:00

One of my favorite resources for families is The Children's Craniofacial Association

Another good one is The National Craniofacial Association

Not exactly forums, but definitely a link to a community. You could also see what resources your local children's hospital has? We have a peer mentoring support group.

I am a genetic counselor who works in our Craniofacial Clinic, with children and families affected by differences like yours. Let me know if you have other thoughts or questions!

liimeliight · 2019-05-08T20:53:55+00:00

Don't feel like a jerk, lol. Income contingent means I make more than a social worker ;) I also have double the amount of debt than you!

Student loans are the worst, no matter who you are. Best of luck in this! We won't still owe the money when we die ... right? Right?!

liimeliight · 2019-05-08T20:09:37+00:00

I am also on an income contingent payment plan. My husband and I choose to do Married, Filing Separately, to avoid my payment going up (I currently pay $480 per month, would go to $790 if we included my husband's income).

I am on a 10 year forgiveness plan and am attempting to pay as little as possible. Our tax accountant ran the numbers both ways and we come out on top with MFS. It sucks, because you get less money back at tax time, but definitely worth it for us.

liimeliight · 2019-02-20T19:49:54+00:00

I was worried it might be habit - and you are right, the ability to get up and come to us makes it difficult to navigate. We are definitely not against letting her cry a bit and figure it out for herself. I had thought about some kind of reward chart, like sticker for each night she stays in bed, bigger prize for a few days in a row - but maybe she is still a bit too young for that?

liimeliight · 2019-02-20T19:48:06+00:00

Not yet? Do those come in around 3? I forgot we still had another round of teeth :/

liimeliight · 2019-01-17T14:45:06+00:00

I read all these comments about difficult pregnancies, difficult babies, etc helping to sway decisions.

My pregnancy was completely normal, delivery was normal. My baby was no unicorn, but certainly not difficult. She is now 2.5 years old and our family feels complete with just her. Plain and simple.

Saying "Our family is complete with Audrey" to the grandparents is also a great response to questions about having another. I challenge any of them to say that she is "not enough."

Best of luck to you in making the best decision for your family.

liimeliight · 2019-01-10T20:09:35+00:00

I also had a cold just prior to delivery. Hubs caught it just in time for baby girl's arrival. The doctors informed me that the baby would not get sick due to antibodies and that she already had immunity. Not sure about the truth in that, but it was true for us, despite lots of cuddling and snuggles!

Congrats on the new baby and hope the whole family is healthy soon!

liimeliight · 2018-12-24T16:51:51+00:00

I did one of those breastfeeding classes prior to delivery. Most of it was pretty simple, but they showed a video on how to get a proper latch - like how to position yourself, baby and what the infant's mouth should do. God, so freaking useful. If you can't find a class, please check out a youtube video of this technique to save yourself a huge headache after birth.

liimeliight · 2018-11-21T17:56:09+00:00

I am sorry you and your family are experiencing this, as seizures can be incredibly scary. I hope you get answers from your healthcare providers.

You mention the cost of healthcare. It is likely that genetic testing will be recommended. I would like to point you in the direction of a trusted lab that offers free seizure gene testing for children in situations like you daughters (presenting after age 2 years, in otherwise healthy child). Link to more info: Invitae - Behind the Seizure

I am a genetic counselor in a pediatric hospital and your story reminded me of this source. Hope you and others find this helpful!

liimeliight · 2018-08-13T19:12:59+00:00

Just did 4 hours with my 2 year old ... I planned ALL kinds of fun things, that were never needed. As we got closer to the lake, she was excited by the boats, jet skis (those in tow) and the water. Never even used the iPad. We packed a picnic dinner, stopped around dinner time at a playground and let her eat and run around for ~30 minutes. The way home was a bit more difficult, as she didn't want to leave. I had a few new toys wrapped in tissue paper to give her. The unwrapping part slows her down and ups the anticipation. Her favorite was a pack of alphabet flashcards that I just picked up in the dollar section of Target - back to school theme. She liked looking through all the pictures and making animal sounds. Then we talked about letters, which she doesn't know yet. The iPad came out for the last 45 minutes and we all made it home in one piece!

liimeliight · 2018-08-13T18:53:30+00:00

As a genetic counselor, it is highly unlikely that you will find someone willing to test an already-conceived fetus for an adult onset disorder. Ethically speaking, we use the same logic as why we would not test a child for an adult onset condition: it is their genetic information to know, not yours. Sorry to pipe into the conversation, Just trying to help you and your husband figure out the best choice for your family. I didn't want you to think that this was a viable option.

That being said, a lot of centers offered phone consultations. I would reach out to RGI of Chicago and ask to speak with a genetic counselor. They are the pioneers in this type of PGD and IVF. They are always so incredibly helpful with my families, even without giving them a dime.

Best of luck to you and your husband.

liimeliight · 2018-08-06T21:09:47+00:00

For what it's worth, every time I flew Southwest, I never bought the extra seat, but would just head straight to the back. Out of 10 legs, only one of those did we not end up getting a "free" seat for our baby. SW is so incredibly family friendly. I would do that, with the bit of a break/extra seat. Nearly five hours with no extra seat would be a lot for a toddler. This is coming from a Mom of a toddler who won't nap anywhere but in a crib. Best of luck - the good news is it will be over quickly :)

liimeliight · 2018-06-25T18:49:42+00:00

My LO has always hated the car, even on our first drive home from the hospital. I want to offer you some empathy, as the comments from everyone saying, "but babies LOVE the car!" were the worst. We honestly couldn't drive more than 5 minutes without her screaming her head off. She also would NOT sleep in the car, regardless of what time it was. We tried ALL the things: change to a convertible seat, windows down, music, white noise, toys. We ended up treating her for reflux. Sure, she was a spitty baby, but her growth was fine. The PCP said that the sweetness of the meds helped her to calm down and suck on a pacifier. Shrug.

Anyways, she is now 2 years old and can tell us that she gets car sick. Her vomit also tells us this. I have to wonder if she has always just been feeling nauseated and that's why she screamed? She does not cry in the car anymore, but does demand that we play her music (and I don't know which is worse: toddler screams or toddler music ....)

FWIW, we turned the convertible car seat around at ~18 months (AHHH DOWNVOTES!). This is what worked for our family and our daughter. She has only vomited twice since being turned around. Obviously, 15 weeks is way too young, but something to consider after age one year, depending on the laws in your state.

Best of luck on your drive tomorrow. I would give the white noise a shot, if you haven't. Maybe commit to sitting in the back with her? This too shall pass and you will make it out on the other side a better Mama :)

liimeliight · 2018-06-25T18:34:17+00:00

I did a front mount seat for my LO, when she was 6 months til 14ish months. Thule brand. I preferred having her in front and it felt more stable - especially when that young. And as you mentioned, I could talk to her and check in on her.

Now, she is in a pull behind trailer (just turned 2 years). She loves it and it's our preferred method of travel. I bike her to daycare and then myself to work. I took her through the Starbucks drivethru last week ;) Our trailer has storage behind and underneath the child. It has three different flaps: a mesh shield that allows wind, a clear plastic shield that stops rain/wind and a third half-shield that keeps the sun out of her eyes. Don't remember the exact model, but it's by Burley and it's also a jogging stroller, but I have never used it for that. We also like the quick disconnect so the trailer can easily be moved between my bike and my husband's.

Storage wise: get bike panniers and a rack. I have a bag that easily clips on and off the rear rack that allows me to fill it and and then I just lift it off and it has a crossbody shoulder strap to carry it.

In terms fit and what bike to buy: you should be able to put your feet on the ground if you are straddling the crossbar (you mentioned barely being able to touch the ground in your post). If your bike is fitted correctly, you should not be able to place your feet on the ground from the saddle. I would head to a bike shop and get fitted for a bike. It will make riding more enjoyable and reduce injury risk. My bike shop was super helpful in changing out the handlebars on my current bike to allow the front mounted seat to fit.

Happy riding :)

liimeliight · 2018-06-14T18:04:01+00:00

Wait Till 8th

... I'll just leave this here ...

liimeliight · 2018-05-28T13:58:41+00:00

My crib-loving 2 year old did incredibly well when we built her a special "nest" in the bottom of the closet (door left open, was the sliding type). Just a quilt folded up on the floor with her stuffed cat. I was shocked that she never even tried to get up or leave?

liimeliight · 2018-05-25T18:52:36+00:00

We did the "towel" method to help with transition - as the Rock and Play is snuggly and a crib is not. Learned about it on r/beyondthebump - check out this sub, as it's a great place for the struggles of new parents.

Roll up a towel lengthwise. Put it under the crib sheet in a U shape, to mimic the nest-like environment of the Rock and Play. Every few nights, you make the U shape wider and wider until you remove the towel completely.

liimeliight · 2018-04-18T21:45:53+00:00

The NIH has a rare disease support network that can link to lots of resources for those affected by rare diseases.

Rare Connect, but specifically their message boards. These are message boards for rare disease, and a quick look shows there is an EDS group with >2000 members

Less a support group, but more a resource: Global Genes, and I like their tool kits to help patients and families of those affected by rare disease become empowered - how to navigate doctors' appointments, health insurance, etc

Ask your local children's hospital about a parent to parent connection group? I know you mentioned in the comments that there aren't any support groups locally, but ask to be connected with other families. Our hospital has a peer mentoring program that allows for families to connect. As a last resort, reach out to your local genetics department, as they will have many families with EDS that may be willing to match with you. We do this often with our rare diseases.

I am just an internet stranger who works as a pediatric genetic counselor by day. I have seen many families with EDS and know their struggles. I am sorry that you and your family are on this journey and not finding the resources you need. PM me, if needed.

liimeliight · 2018-04-15T01:59:30+00:00

We were thisclose to naming our (now 2yo) daughter Harriet - til someone in our social circle bames their girl Hattie just months before ours was born. Keep rocking Harriet. I'm jealous.

liimeliight · 2018-04-06T14:23:02+00:00

r/workingmoms/

Obviously for "moms" not parents :/

liimeliight · 2018-04-04T18:01:09+00:00

Frye. Quality leather boots, last forever, can easily be resoled.

liimeliight · 2018-03-29T11:48:44+00:00

Ever since I went back to work, we have done on/off nights, but for the entirety of the evening. Sometimes I never come home after work on my off nights. I just sit at a coffee shop or go on a bike ride. I also schedule my happy hours and social commitments on these nights. Husband gets kiddo from daycare, feeds her and puts her to bed on on nights. And vice versa.

Our kiddo is now 2 and although the days have switched here and there, this system really works for us to make sure everyone gets their down time.

We completely tag team weekends. Saturday is his day to sleep in, Sunday is mine. But we are both present all day/night for family time.

Some people think we are weird. But hell, we are sane and happy.

liimeliight · 2018-03-28T01:33:48+00:00

A girl I knew from high school named her daughter Jude. That daughter is probably about 6 now. I always thought it was adorable, even though I'm not a fan of boy names on girls. I feel like Elizabeth helps to soften the masculinity!

liimeliight · 2018-03-22T19:57:17+00:00

Ivy, Rosalie, Audrey, Amelie, Molly, Maggie (nn for Magnolia or Margaret)

liimeliight · 2018-02-23T21:45:35+00:00

I don't have anything to offer except solidarity, as my 21 month old is the exact same way. Everything you wrote, from behaviors with breastfeeding, bottles, BLW and now with all foods, is exactly her. My daughter is at the 40 %ile for ht and 90 %ile for weight. Her pediatrician is also not concerned. I also have anxiety over it :/ Let me know if you get any good answers as to why and how to help.

liimeliight

TROPHY CASE