Can I share this here....

KnCmamma · 08-02-2002, 08:51 PM

I thought maybe I could share this here with you all as you are so supportive and wonderful....

I have some updates on what my son Christian(2yrs old) has just finally accomplished in the last few days(Christian is developmentally delayed incase your wondering why he is just learning to do these things now, so you see why my being excited about it) and some new pictures of the kids too...

Christian can finally get onto his ride on car all by himself now and go zooming around the room.

Christian can also get up into a standing position from the floor without holding onto anything.

Also while standing sometimes Christian will take a step or two(but not go anywhere just stay in the same spot, if you KWIM)

Also he is now climbing the stairs without any help so we really have to watch that too.

Here's a few of the new pictures that were taken at our day trip last week to Storybook Gardens(there are still a bunch more, but these are the ones that have been scanned successfully so far) and also some others of Christian that were taken to be possibly used in a bruchure(yes my son's picture might be in a brochure for a Special Needs Therapy program).

http://pages.ivillage.com/kncmamma/storybook.html

Enjoy!

Jinkies · 08-02-2002, 09:19 PM

Congratulations on Christian's progress! I know from experience how exciting these kinds of milestones are. My son Adam who is 2 1/2 was born with cranium bifidum which is like spina bifida only the opening was on his head. He's developmentally delayed also but making really good progress.

Do you have Christian in an early intervention program? Adam had home visits for speech, occupational, and physical therapy. Now we go to the school for classes and get to see the therpists there.

There can be a lot of stress being a parent of a special needs child--I know I used food to cope a lot. Do you?

KnCmamma · 08-02-2002, 10:15 PM

Hi there Jinkies....

Yep Christian has been in a home visiting program for infants(which is early intervention). We are starting to move onto the next step though for therapistst and such.(as Christian isn't an infant anymore).

I have never heard of cranium bifidum, till now. Did your son Adam go through a lot of surgeries? Do you have any pictures of your kids(I saw in your profile you have 2 children).

I really don't know if I used food to cope through the stresses...I do know though that I have had food issues for a very long time(even before my son came along). My biggest problem of eating is when I am bored or just sitting there watching tv at times too.

I am going to be one crazy mamma when Christian is finally walking....I have been waiting so long for the day to come.

Question for you....do you ever get sick and tired of all the therapy appts and just wish you could take a break from them all?

PNG 2 · 08-02-2002, 10:21 PM

Very sweet pictures! And great accomplishments too, it's always exciting to reach a milestone, no matter the age, right? My oldest daughter doesn't have developmental problems, but she is learning disabled, somewhat, and she has an extreme case of ADHD, so I definately understand the need to gush and be a proud mommy! She doesn't live with me, so we have an agreement that besides our normal weekly talks, any big things that she does, or that she's going through, she calls me, and I pay for it, and I also make her awards and stuff for bringing her grades up and stuff.... this year she's finally getting the help she needs in school, they've been putting her off as a "difficult" child...now, we have her on medication, and she's getting extra attention for the learning disability.... a cognitive problem, she takes the info in, and processes it, but getting it from head to mouth, or paper eludes her...

I think it's great that you shared your kids with us... they look like such sweeties, and I think your little boy would be great for the brochure... he just looks like he's having the greatest time... I'd be sold

nasus40 · 08-02-2002, 10:32 PM

God gives these special children only to those that can handle them and deserves their love. God Bless you!!!

What beautiful children (nice site too)

Jennelle · 08-03-2002, 01:30 PM

KnC...I know you are so excited to see your "baby" doing all these new things! My niece, Amanda, is three years old and has Angelman's Syndrome. It comes in different forms, and all the forms are due to a glitch in chromosome 15. In Amanda's case, she has what's called "deletion positive" Angelman's, which means that she is actually missing part of chromosome 15.

Like Christian, Amanda isn't walking independently yet, but she can walk holding on to furniture. Also, she scoots like a mad woman! She's even got calluses on her knees from all the crawling! She's learning to drink with a sippy cup and just started working on feeding herself with a spoon. Her syndrome means she will never talk beyond more than 10 or 20 words, and she is also severly mentally ******ed. God gave her to my sister 'cause she had the strength.

I know you moms of special needs children don't see yourselves as heroes because they are, after all, your children. I do, though. I'm not so sure I could do it.

Congratulations on Christian's accomplisments!

ANNE D · 08-03-2002, 03:21 PM

Hi Jen:
Thats just great!! I know how much these milestones can
mean. One of my twins was born with autisim. He is
non verbal and severely disabled. When he makes his "giant
steps" we all rejoice!! Best wishes to you and Christian he
is an angel.

Anne.

KnCmamma · 08-03-2002, 11:15 PM

Thanx everyone...I really means a lot to me....

And Jennelle....I bet given if you were put into the situation you would be like myself and your sister. I've had so many people tell me that I am such an angel and such, but I feel like I am just doing my part as a parent.

However now when people tell me I have a very special child...I tell them no, I have 2 very special children.

Thanx,

Jinkies · 08-04-2002, 04:24 PM

Hi, KnCMamma!

Yes, Adam did have surgery when he was one day old to close the opening on his head. He has a big scar on the back of his head and it's flat rather than rounded like most people's heads. Our neurologist told us that his delays would most likely be gross motor but he's had fine motor and speech delays as well. He also has a cyst on his tailbone called a syrinx that will probably need surgery if it keeps growing but the neurosurgeon doesn't want to do anything right now. Adam will get another MRI in December.

The home visits we've had were really helpful but always a little stressful with making sure the house was clean, I had showered, etc. Or worse, sometimes I would forget all about the appointment and we'd all be in our pajamas, the house would be a wreck and then there'd be a knock on the door!

Right now we've decided to keep taking Adam to class and have the speech, occupational, and physical therapist just check on him there. He's making progress, slowly but surely.

We'd like to have another baby but it's scary to worry about another birth defect. I definitely won't get pregnant at this weight. Do you want to have more kids? It's a huge motivator for me to lose weight but I'm in a slump right now. I know how important a healthy body is yet I'm not doing what I need to. I just need to get back with drinking my water, walking, and watching what I eat.

snowball1 · 08-04-2002, 04:43 PM

Jen, CONGRATS on Christian's accomplishments!!! That is wonderful!!!

I'm not a mommy yet, but I can only imagine how unbelievably proud you are of your two little angels! The pictures of them are just great

nikolas · 08-05-2002, 12:18 AM

What adorable pictures of your children. Glad to hear your son is reaching some exciting milestones.

The love of my life, my godchild, was born with Down's Syndrome. My life and those of many others have been blessed by this wonderful child.

Thank you for sharing your pictures.

jiffypop · 08-05-2002, 08:55 AM

once again, you ladies have impressed me with your courage, and your incredibly adorable kids, no matter what their abilities are.

i have five nieces and nephews.. two have speech and learning disabilities, one has aspbergers, and the other has apraxia [at least, that's what i think my sister said]. and for those who are counting, yes, that means that of the five, there's only one without disabilities. and she weighed less than four pounds when she was born [at term]. they're all doing great. and i wouldn't trade a single one of them...

how can i when the two youngest ones come up to me and tell me that my tummy is shrinking, and that he can finally get his arms around me????

KnCmamma · 08-05-2002, 10:36 AM

Jinkies....

My husband and I have planned not to have anymore children. However we planned this even before having our son. We have felt that the 2 children we have make a perfect family for us. And for the last year I have really felt complete. 1 really great thing about having a child who is developmentally delayed is that I have really gotten my baby fix out of him(I know that kinda sounds stupid but it's so true).

However if we were to have another I would be totally paranoid that the same thing would happen. If I were to ever get pregnant again(as it could happen) I would definitely get all the testing done so that I could know before hand(as we had absolutely no idea Christian was the way he was till after he was born).

Also I have just recently found out that my one nephew(who is 2mos old today, he is my brother's second son) has a heart murmur(they just found it), and also might have seizure problems...and is develpmentally delayed and they aren't ruling out Down Syndrome. This is all a big blow to the family as we all can't beleive it's all happening again. Only time will tell though.

Thanx all for your wonderful comments about my son. He sure is a joy to have.

Jen · 08-06-2002, 06:10 PM

Great pics, your kids are really cute. How wonderful that your boy is doing so well, certainly something to celebrate.

I too think you are an amazing person and parent.

jacksonmom · 08-06-2002, 08:58 PM

KnCmamma- what a cutie your kids are! Every milestone is a HUGE celebration!

Jinkies- about not having your house clean when therapist arrived don't worry about it. I know he now goes to school but if they should start at home during summer etc. don't sweat it. I'm a occupational therpist who does home health. Believe when I come to do therapy I could careless how the house looks but more interestd in how the patient is progressing. Glad to see your child is doing good to. Have a great week!