Kristin's 9 month appointment

[lizkuebler]

How many times have you went to an appointment and received "bad news" ? I mean it is not too bad, but it never seems to be anything good. I just feel like I am not doing anything right with her. It is an awful feeling. I mean she is 9 months old and can't even sit up, she is not anywhere near holding a bottle. I feel like the therapy is doing nothing, I wonder what else can I do. Unfortunately my husband and I have to work full time , try and take care of two kids and now (for the last 9 months) find time to go to the dr. basically on a weekly basis. I feel like I can't do anything right. It is so frustrating. I am hoping that there are other mothers/fathers who can relate to this. Kristin is such a good girl. The ped wants her to go see the eye doctor because he thinks that she is cross-eyed, she has to go back to she the ped in two weeks because she has constant ear infections, and we want to see if the current medicine is going to clear up the one she has now. Then come Feb starts all her one year checks for everything. I really just needed to vent and see if you have ever felt as overwhelmed as I do.

Thanks for listening
Liz

[Evans Dad]

Liz

Sounds very familiar, don't get frustrated. Our son Evan just turned 3 this year, and just within the last week he started walking.

Like your little one, he didn't reach a lot of the milestones we thought he would in the first year. He had open heart surgery, and also eye surgery to fix "cross eyes".

Evan is our only child, but we both work full time as well and at times felt guilty. We have quickly learned that Evan does stuff when he is ready. Therapy does work they just like to show it when they want.

Our first year was pretty tough, but looking back we also learned a lot of stuff about Evan.

Hang in there

Clint

[kellyds]

Joshua is ten months and two days. He can't yet sit up, but I didn't expect him to be able to do that yet. I nurse, so he hasn't had any practice with a bottle, but I KNOW he couldn't hold one.

I just keep sitting him in my lap and "practicing" sitting with him. It's not a race. When he can do it, he'll do it. ;D

We live in a small town. We have to travel eighty miles with six kids to get to most of the appointments with specialists so, yes, it has been an adjustment. I stopped working eighteen months ago, so that helps. (I only worked two days a week, but I homeschool our kids, so I really needed the extra time.)

Don't ever feel like you aren't doing anything right. Just do your very best. A little hint: Doctors pick up on your lack of self-confidence and have you come back for brief, meaningless follow-ups more often, so they can keep an eye on you. If you are supremely confident and obnoxiously opinionated like myself, they have more of a tendency to say, "Just call if you need something."

[Cathy]

First of all Liz... A GREAT BIG HUG TO YOU!!

Yes, we all feel overwhelmed at some point. Okay, I should only speak for myself here, Yes I feel overwhelmed constantly. Katie just turned 5, we went through the therapies and ear infections and tubes, tonsils and adenoids out, open heart surgery, pneumonia, constant sinus infections. I totally understand where you are coming from.

Remember that all babies are individuals and that goes for babies with DS. THe will all do things when they are ready. Katie did not sit up alone until she was 10 months and did not walk until she 2. She is 5 and shows absolutely no interest in being potty trained.

She does a lot of things later than most kids, but when she does them, I am so proud of her. Her accomplishments seem to be so bittersweet. Just hang in there, trust your motherly instincts. Kristin is doing fine. You are doing great too!

And remember, we are here so you can vent away when ever you feel the need!

Hugs,

Cathy, Mom to the ever busy Princess Katie!

[nolansmom]

Some things I tried with Nolan for sitting....
The Bumbo baby seat. I think they are about $50 but you shouldnt' have to buy one because Early Intervention will pay for it. I didn't want to wait that long so we borrowed one from the therapist. The seat is a little too deep in the back so put a little towel there and also at first he fell over so I rolled a blanket and put it around him (under his arms). It really helped him get used to that position even if he wasn't doing any of the work himself. After I saw some progression I just sat him on a blanket and put a boppy around him so when he fell it would cushion the fall. Try to have her sitting any time you can. Does she use a high chair? Nolan also uses a seat which attaches to our table. He was sitting at 8 and 1/2 months but I worked very hard to get him there. I am a stay at home mom so I was able to push him. Don't beat yourself up over it, just do the best you can. As far as the bottle goes, Nolan won't hold his own yet...I think it's to heavy. When she is on her back or whatever positon she is in have her hold some heavier objects that are safe (balls, etc..) or even just have her hold the empty bottle so she gets used to the idea. Hope this helps.

[dannysmom]

I am right there with you. Sometimes the guilt is overwhelming!! I do stay at home...but that comes with guilt as well. I try to enjoy my son....and let him do things when HE wants. I know it's hard. The doctors appointments alone can drive someone crazy!! My son has been to the doctors more in his 6 months..than my 3 year old daughter has been in her whole life. And my son is hasn't even gotten a cold yet!!!! Just the cardio, eye doc, reg ped, immunizations....and the list goes on.

I am glad you are on the site..and can get support...because we all need it sometimes!!


PS I am editing this to note that my typical daughter NEVER held her bottle. She was never interested in it. She went to a sippy cup and held that...but never the bottle. She is proof that any child ...ds or not...will do things on their own timetable!!

[Staci]

Ah, Liz! Big (((HUGS)))!!

I stay at home with mine, I can't imagine how much MORE overwhelmed I would feel if I worked! I am definitely overwhelmed, but it's getting better and easier as they get older. My son, Aidan (age 5, Down syndrome), didn't start sitting up until he was 13 months old! He started holding a bottle around 18 months...and started walking at 3 1/2. He had therapy since he was a month old, but Aidan is the type where he has to be EXTRA comfortable when doing and trying new things...even though he might have been ready to do some of this stuff before he actually did it...he was scared and leery and did it when HE was ready! That's just how Aidan is! Plus...he's been through a LOT medically! Three surgeries (2 intestinal, 1 open heart) and years of pain from one of his intestinal blockages being constantly missed. On top of that, and I have a 2 year old daughter who has a major heart defect! AUGH! Yes, life can be overwhelming and I also feel guilty that I'm not doing enough for my kiddos...I think that's just going to be part of being a mom! Always something to feel guilty about...and if there isn't, we'll make something up! Just the parent in us! Hugs to you and hang in there. As your daughter gets older, things will be better! If you ever need someone to talk to, we're always here!

Staci

[Chris]

The first year is tough with all the doctors appointments. Sarah didn't even prop sit until she was 11 months and was sitting fairly well by her first birthday. Just keep working with Kristin and enjoy her babyhood. Believe me, she will sit up in her own time. She just needs time to build her strength.

Now for the bottle holding.........that may not come for a very long time if she is anything like my child. Sarah didn't ever hold her own bottle if there was milk in it but could hold a bottle with water in it just fine.

Give Kristin a great big hug for me.

Chris

[Valerie]

Oh, Believe me, I understand! Seems like Nicholas' first year, all we did was go to the Dr. We were traveling 1 1/2 hrs away EVERY week to the cardiologist, and also going to his regular Dr all the time for checkups, shots, ear infections, etc. He's had 2 surgeries, 3 if you count removing one of his chest wires a couple monthes ago.

Where we felt like we were failing him was getting him to eat. I hated going to the cardiologist because he always said, "He needs to eat more. He needs to gain weight so we can do his surgery." We KNEW that! We were trying like crazy! We would spend an hour trying to get him to eat, and barely get one ounce in him. We felt like we were starving him! Talk about feeling like failures!

All I can tell you is it DOES get better! We are down to going to the cardiologist yearly, and regular doc only if he's sick.

As for reaching those milestones, they WILL do it, when THEY are ready, and not a minute before, no matter how much therapy they have or how much you work with them! They have their own little timetable to follow! Hang in there!

[Deannalee]

Hopefully this will make you feel better. Justin is a surviving identical twin born at 29 weeks weighing 1 lb 14 oz and 12 in long. We started with early intervention at about 5 months of age. They did not think this little peanut would ever hold his head up. At about 27 months....he finally sat up all by himself. Then about a month later he finally started to bunny hop. All of these kids will master milestones at their own pace battling their own medical obstacles. It is VERY distressing to hear negative news constantly. And for me.....always comparing where my son is compared to all the other kids here at UNO. Justin is very physically delayed compared to everyone else.

As a side note....I am a single Mom raising 4 surviving children.....all by myself. I have to do everything.....all his appts, therapies, meds, tube feeds, everything. I don't think busyness causes their delays so much. Give yourself credit for all you ARE doing. Don't beat yourself up over your childs own time frame for milestones. Easier said than done.....because I always question myself.....but this is coming from those who have listened to me vent!!!!!

Deanna

[CC]

Even thou my boy is 13 now I can so remember all the appointments, EI, Docs, Therapies, etc., along with working, some days were like BUT you get through and the next day things seem lots better. It does get easier it really really does BUT the truth be told even now 13 years later I have some days like that, less and less but I still do now and then. Vent away girl it has always helped me tons and then go take a nice looooooong bubble bath or something just for you ;D

Everyone here that said our kids will do at their own time OMG that is soooo true my son has taught me that over and over again and still till this day proves that to be true And honestly even thou I know that to be true I still sometimes have to remind myself, so yes girl MANY can relate, your NOT alone ~

MEGA HUGS going out to you

CC ~

[Chester]

The appointments can be overwhelming!

Life is different now that our little guy is three. Not nearly as many Dr. appointments, no more home EI, I've also cut out the private therapy for the winter. It is okay to say no, or schedule appointments to fit your schedule better.

Hang in There!
Dawn