Wednesday, January 28, 2009

Special Post Today

Being a mom (or a parent) is a very special, life-changing thing. Being a mom of multiples has its own special corner of the world. As most of you know, I belong to a fantastic support group online of Mother's of Multiples. I'm so sad to tell you all that one of our members (Brook) has received devestating news. Her identical twin baby girls have been diagnosed with  Werdnig-Hoffman Disease. Here is the wikipedia article: 

http://en.wikipedia.org/wiki/Werdnig-Hoffman_disease.  

It is a rare genetic disease that is untreatable. They have the most severe form.  Their lungs are going to slowly give out b/c the muscles will not be able to help them breath anymore.

The diagnosis of Brook's girls has hit me very hard. Brook and I have discussed feeding tubes in the past because she feared one of her daughters may need one, not knowing about this disease yet. She has supported me through all we've been through with Jax, and for this news to come is devestating to our board of moms. This group of women span the country, and yet are the closest thing most of have for quick advice, long conversations, virtual hugs, virtual shoulders to cry on and most importantly advocates that celebrate eachother's victories. I've cried at my computer to these women and this particular woman more times than I care to admit. 

We have pulled together to try and help Brook and her family. We have decided to create a baked-goods calendar where we will each take a turn each week to send some baked-love, raise money for professional portraits for memories, and most importantly, raise as much money as possible to give the family. They have medical treatments that need to be paid for and we would like Brook to be able to take a leave of absence from work to spend this time with the girls. 

I have set up a donation fund in honor of Brook's family. I have included a stamp with a link on the side of this blog if anyone is interested in helping out. I know economic times are hard for everyone right now, so even the smallest amount would be very appreciated, and touch this family. If you're not able to donate monetarily, please say prayers for this family. Let's all squeeze our babies a little tighter tonight...

...and be thankful for moments like these.

Cereal


We started with a smile

Here it comes!
Mmm...not so bad...
Ok...I'm DONE!!
Can I have my bottle now?

Tuesday, January 27, 2009

6 Month Check Up

The boy's check up went well. They of course hated the shots, but the doctor seems pleased with their development. Jaxon was a trooper with the oral immunization (Rotovirus). It took about 5 tries to get it down, but we ended up getting it after he tried several times to throw it up. We think that was the first thing he's swallowed in months! Poor baby had a tough time, but forged thru. We'll be watching his head shape, and continue doing his stretches and therapy in hopes he won't need a helmet for his mishaped head. The pediatrician has good hopes he'll be okay, but she wants reports to stay on top of it. Thank goodness Aunt Sue Lettenberger is visiting to help with this appointment...it's sort of chaos at these appointments! Both boys had a lot of smiles and giggles for the doctor and she mentioned how neat it was to watch their personalities develop.

These are their stats:

Head - Brady is 50% for 6 months and Jax is 25% for 6 months

Weight - They are both about 10% for 4 months (**Update** Big B weighed 12lbs, 14.5oz, and Jax weighed 12lbs, 10.5oz - pretty much the same!!)

Length - They are both about 10% for 4 months 

The doctor said their length/weight are perfectly proportionate, and it's normal for certain limbs to measure bigger than others, like lets say a head for an example!
Their growth curves are great. They are about 4 ounces different in weight. The doctor's scale doesn't match all the other scales, so I'll post their weights tomorrow after RSV shots and weights. They are actually only about 3/4" different in length which really surprised me.

We get to start Brady on cereal now, so we'll see how that goes. If all goes well with cereal over the next few weeks, the doctor said to introduce one food a week, and to start with vegetables before fruit, and go by colors. We can also introduce a sippy cup soon...woah! We'll be starting tonight with a spoon and cereal, wish us luck!

Saturday, January 24, 2009

Katie Beckett Program

We received an approval letter today from the Katie Beckett Program for Jaxon. This program offers Medicaid coverage for infants and children who are deemed disabled and are turned down thru the state for Medicaid coverage due to a few different reasons. This program uses the child's assessts rather than the families' assessts. The state's regulation of assessts for a family is pretty strict, so this program's approval is a small weight off our shoulders for health care costs this year for one child at least. With all the deductibles and co-insurances starting over, and not to mention our new sky-high premium costs that we must pay 100% of for the kids and myself, this definitely helps us. 
I hate the fact that Jaxon qualifies for this program, but soon enough we pray he doesn't qualify resulting in less medical costs anyway at that point!

I wanted to put this information out there for anyone else who could possibly use it. I had to of course fill out a lot of paperwork, provide a birth certificate, hospital records and a representative comes to the house for an in-person interview of the parent and child. The child needs to have significant medical needs that are tended to thru a trained parent in the home. The child's only other option would be a medical facility of which then SSI would pick up coverage then. We obviously have never wanted Jaxon institutionalized and taken care of in a nursing facility, so we live with the oxygen tanks, hoses, cannulas, feeding tubes, pumps, reflux wedges, syringes etc...etc.. with a smile (most of the time) :) We try to count our blessings since we're told this is all a temporary situation. We're not sure anymore what temporary means, but we do hold onto it. We ARE one of the lucky ones in that regard.
This information was passed to me from a very dear friend (we love you Auntie Sidney) so I hope this information can help one of you moms out there...

Thursday, January 22, 2009

Swinger

Jaxon did better overnight. Not great, but better. We brought the swing upstairs and he seemed to be more comfortable. We'll try it again tonight to see how he does. I have to add one more picture of cuteness...


Promised Pictures


Jax in all his cuteness

I thought this was cute
They're very serious babies :)
Uncle Craig with Brady
Classic Brady squishing Jax (inside look at what happened in utero)
My little prince Jax
Play date with Miss Tracy
"Did you see mom's hair today?!"
A rare sweet glance from Jax to Brady
Wonder what they're talking about?
The aftermath of Brady's first roll over from his belly!
Give me a kiss Jax!
Nana Jayne with a lap full of babies
Jaxon working on his exercise ball
Jax and daddy watching the big game
Hey Jax...your ear is sticking out!
Cousins John and Amy came to love the boys up
HI BRADY!
Too sweet
Jax about to get bundled up to go to the hospital
Jax beating up Brady

Brady doing the same back


Tuesday, January 20, 2009

G.I. Follow up

We had Jaxon's G.I. appointment today. We will be adding some more calories to his feed to see if he tolerates it over the next 2-3 days. If he does tolerate it, then we'll increase his amount of food per hour and start giving him breaks off the pump. This is so he still gets the amount he needs. He will be getting his prevacid in the morning and in the evening, and in order to administer it, he needs to have his pump off for an hour before, and a half hour after. So he will need to be off his pump for 3 hrs just for his Prevacid need. We would also have him off the pump during baths, and at moments for venting purposes. If we can increase the amount of time he's off the pump, the doctor wants us to turn it off during the bad overnight hours (usually after 2am). The only solution to cut down on the heaves at that time is to give his tummy a rest, or to let him sleep on his tummy. 

The doc agreed to try and get insurance to cover this after this next month. He feels that Jaxon's SIDS threat is still too great. Apparently infants have a much less greater risk of SIDS after 5 months of development...and the boys only have just over 4 real months of development. So I'm hoping that getting the pump off for a few hours during the night will help....but we just don't have the best confidence in it. We know that Jax needs to grow out of this, and being on his tummy would help the most. We of course understand it's not safe enough yet for him. We also know that since his torticollis is so bad, he'd only be able to lay his head to the left if on his tummy, which would be awful for our progress on his neck.
The G.I. team wants Jax to see a physical therapist along with the occupational therapist, but our OT is working on his torticollis....but I'll see what she says during his OT appointment tomorrow.
The doctor also agreed that the "attacks" have been/are Sandifers Syndrome, which does make torticollis worse. This is definitely "just going away" though...so that is nice!
We have another follow-up appointment set for Feb.24. We'll be contacted soon to schedule surgery to remove the tube and replace with a MIC-key button. He is eligible after Feb.14, so sometime after that. They want to ensure he has a good "tract" grown for a successful surgery. Apparently this "button" will make things much easier when Jax is not connected to the pump...there won't be a cord hanging out anymore....we can't wait. We're not thrilled that Jax will need surgery to do this, but it's necessary since there's no predicted end to the feeding tube.

On a good note - Jax weighed in at 12lbs, 8oz. They said he exceeded their goal for him by 190%. He is only 22.7" long, that's why he looks so much chubbier than Brady...he's a shorty! They said his growth was really stunted, but it is possible to catch up to Brady (which they of course feel is his true potential height)...we'll see! He is officially in the 5% for his adjusted age. Mind you, he wasn't even on the adjusted chart 3 months ago...they said they rarely see more than a 2% change over 3 month periods...so the g-tube has really saved his life. The G.I. charts are different than our pediatrician's charts, so we'll see what she says Monday for their 6-month appointment.

Jason and I will have to keep forging thru these awful nights until something gives. Does anyone know the number to the sleep-fairy? Apparently she lost Jaxon's number!

Sunday, January 18, 2009

Rollin' Rollin' Rollin'

I'm sorry I haven't posted for a few days. It's hard when I can't download pictures.
Brady rolled over from his belly to his back twice on Thursday night! He's not going anywhere real quick from his back, but at least we have a start. We've been working with Jax on his big ball for belly time, and he's starting to get more comfortable with it. It will be a bit yet before he can do any rolling. But he is getting stronger every day.
Nights have been very good with Brady again, but pretty bad with Jax lately.  We take turns at night with Jax and we counted over 15 times last night. We're getting pretty exhausted. Jax also had a slight attack last night while playing in the exersaucer. He shook a little bit followed up with formula coming out his nose. Nothing as  bad as he used to have, but we were not happy to see it back a little bit. It's been 3.5 weeks since any "attacks" have happened, so we were hoping they were gone forever.
Jax has a follow-up appointment with the G.I. specialist on Tuesday, so I'm sure we'll have some updates about everything. Their big 6 month check up is coming up on the 26th.

I will have tons of pictures from the past week to share with everyone once I get my camera cord back!!

Tuesday, January 13, 2009

Weigh-In

Jaxon's weight today was good. A full 12lbs. Brady wasn't weighed, but I'm guessing he's about 12.5 - 13lbs. They'll both be weighed for RSV shots and their 6month check up in the next 2 weeks, so we'll know their difference then. Brady's head is so much bigger and he's longer, so it's hard to tell.
They're finally in size 2 diapers :) And wearing 6 month jammies. Since Jax can only wear button jammies everyday so his g-tube can stick out, I've been keeping Brady in jammies too to make it fair for all the pictures we take. The boys only leave the house for medical appointments anyway. I'm excited for spring/summer to get them out and about and wearing "clothes".
I'm interested to see if they're on the "actual age" charts yet. We'll find out at their check up. Even in the 1% would make me happy to be on that chart rather than the "adjusted chart" which would be about 4 months old for them.

I can't post pictures since our camera cord is a friends camera case (and she's in Mexico). So it will be a while before I can post any - SORRY!!

Friday, January 9, 2009

Sandifer Syndrome

A light bulb has turned on over my head today. I was helping out a fellow twin-mom online about some reflux information, and I suddenly realized that of all the posts about reflux I've been involved with, have ever described the "attacks" that the boys have had. They have had (its gotten much better in the past month) actual spasms with formula coming out their nose/mouth and unable to breath or have any control over their arms or legs. They are literally choking at the moment. These attacks/spasms have always been the scariest part of their reflux. I realized today that no one has described their child's reflux this way...so I posed the question out on my mom-boards online.
No one knew what I was talking about except one mom...and now I have a name. Sandifer Syndrome. It occurs in a very low number of children with extreme GERD...we seem to like to beat the odds don't we?
So you can bet I'm calling the pediatric G.I. specialist tomorrow so we can discuss this. The syndrome also talks about torticollis and low muscle tone...both of which affect Jax extremely. Knowledge is power...I feel like we have an answer or a name rather to this bizarre behavior the boys have exhibited in the past and still randomly occurs. I want to talk to the docs about it since this behavior has been misdiagnosed in many children as seizures and neurological disorders...so I'd like to be on the safe side and discuss this.
OH...I should state that this "syndrome" is a result of GERD (among other things) and its treated through the GERD (which we do) and should resolve on its own (which it is)...so not to scare anyone. I just always felt that these "attacks" weren't so average for most babies with GERD.

Some information on the syndrome:
http://www.infantrefluxdisease.com/sandifers-syndrome.php

Any moms out there with advice or experience of this syndrome?

Tuesday, January 6, 2009

Random pictures


Two funny things about this photo:
1. Jax is totally cool with Brady eating his hand
2. Jason looks like he has no pants on (I assure you he does)

Jax loves the bumbo seat. It really helps him with head control.

Thursday, January 1, 2009

Happy New Year!

Here's hoping to a happy and healthy 2009.

The boys this morning wearing their NC hats Uncle Dennis gave them.

Brady loving the exersaucer that Anesah and Aidan used to love.
Jax can do it too!