Not Enough Answer!!!

Looks like you've gotten some good responses. Keep in mind that there may not be a lot of people in a position to give you advice, which is why you didn't get the amount of responses you hoped for.

Good luck!

Here is the link to the Mayo Clinic.

http://www.mayoclinic.com/health/digeorge-syndrome/DS00998

Looks like you need to start an "accordion file" that is devoted to your child. You will take the file to each doctor you see.

You may also want to keep a daily schedule of your child's days. I would probably use a note pad or a "Calendar on a page" book.

Start with the morning waking up. How much and what your baby ate, diaper changes each time with time and wet or urine..naps, baths, bedtime. Maybe also add any movements that are new, how long she stays awake.. crying, laughing.. etc..

Then in another file, place all information and instructions you are given by her regular pediatrician, another file for each of the other doctors you see. This way you do not have to try to remember everything when filling out forms and answering questions.

The other thing is to ask friends and family for help. Make a list of what you all need help with. Do you need someone to come over and watch your baby while you take a shower. Do you need people to run to the store once a week?

You will need to stay as organized as possible.

You also should google the syndrome and see if there are any support groups, either close to you or online. Those are the parents that will be able to share helpful info about the syndrome.

I am sending you strength. I know you can find other parents who have children in the same situation. They will want to help you.

My sister had a condition called Rett Syndrome and my mom found a board online that was specifically for that condition. I didn't respond bc I don't know anything about the condition your lil sweetie has, so I can't be much help sorry! But Google the condition and see if you can find an online community for more support in that specific area. I am sure you can gets lots of other types of advice here. Wish you the best!

Hi ana-

BIG HUGS!!! For you...your baby...and your 'honey'...

I have no 'personal' experience with Di Georges...other than a few families I met when my little one had heart surgeries...

There is an organization called "CHIN" as I recollect...that networks folks with kids with all KINDS of heart issues...

The other organization I hooked up with (long ago...my dear one is now 14) is I think called...the national organization of rare disorders...

I found great hope...and information...years ago...thru nurses when shannon was in NICU...

I made a choice to travel with her to the hospital that was best equipped to handle her specific heart issues...In MY case...it was CHOP...(children's hospital of philidelphia). We lived in Northern va at the time.

I have one set of friends that I met with an infant with di georges that I remain in touch with...he has had some surgeries...and has some developmental delays...BUT...HE IS THE love of their lives!!

My little miracle has taught me...and her siblings...and 'perfect strangers' SO much!!!

I would not trade her challenges for anything...

HUGS again...and private me...if you want to talk...

Best Luck!
Michele/cat

first of all, all babies are special. :) some just need more attention than others like ours. The sadness is part of dealing with it. It is called shock. I first went into shock when I was told mine was hard of hearing. things have gotten somewhat better but not good. we have made progress but he is still along ways away from "normal" Little steps will mean so much more to you than if you had a "normal" kid. Most moms can't understand unless they have a child with something different.

Second of all get ready for the medical merry go round. It is an absolute night mare and I am still on it and my son is 3. so things don't really get easier you just learn to adapt. Fustrating is the understatement of the year. you need to get some rest in order to deal with a sick honey and a baby that needs extra attention. sleep when the baby sleeps and make phone calls when she is awake. at first you will wish you could change the condition.

Then you will start accepting it. It is avery hard thing to deal with when you are told something is different about your kid. you will blame yourself , you will get mad at moms who have what is considered to be "normal". You will occasionally catch yourself being jealous for a lack of better words before you learn to accept. You will have a different "normal" than most poeple.

Our as you say special kids will make you learn to appreciate life more and teach you to be more accepting of kids who have issues. You will realize in time she is the most special gift you could have been given. you will have an understanding most people can't comprehend. I have heard alot of moms say their kids who need more attention are the bigger gifts than the ones who don't need extra attention. I am finding this to be true. It will get more fustrating and also more worth the effort. They don't know they are different unless we tell them they are. You will find she will cling to like kids. and most kids will be more patient with them. so chin up the pity party is over ( I know easier said than done) and onward you march because your baby needs you too.

HI Ana,
Your best best would be to contact other parents of children with DiGeorge Syndrome. I googled DiGeorge Syndrome support group and several groups and organizations came up. One is www. vcfsef.org or the Velo-cardio Facial Syndrome Educational Foundation. VCFS is a 22q11.2 deletion and it lists DiGeorge Syndrome as one of its chromosome disorders. They can put you in touch with people in your area and they can probably make recommendations on doctors.
Find out what specialists your baby will need to see. Then look on the website for the insurance company (or call them) to see what doctors are on their approved lists with those specialties. Call your local children's hospital and find out who they have on staff for those specialties.
You are very overwhelmed right now and it is understandable. You have a new baby with some serious medical conditions and a husband who can't help much because he is sick. You are also exhausted. Do you have any friends, neighbors or relatives that you help you out for a while so you can get the sleep you need to be able to get your baby the care that she needs?
Please ask for help! Good luck to you!

NOT ENOUGH INFORMATION:

Who's taking care of your other child born in 2001? Is the picture your have posted of your 1st child and the father or your sick, new baby and the father? Are they different father's? What sickness is the "sick honey" suffering from?

Do you have family or close friends who are able to give you some down time?

Blessings......

Hi Ana,
I'm so sorry to hear about your baby. I wonder if Shriners could help? They helped a friend of mine with her daugher who also had a chromosomal disorder. They really really are a wonderful organization. I would contact them & give your situation to see how to submit an application for help. They cover costs too.
Good luck and God Bless!

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